https://www.livinginthelimbo.com/blog daily 0.75 2023-01-03 https://www.livinginthelimbo.com/blog/a-restful-winter-break monthly 0.5 2023-01-03 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672708031527-TM6ULISJ4WT1G2KIK066/IMG_2293.jpg My Blog - A Restful Winter Break - December 24th, 2022 A selfie of Emma in her kitchen heating up a heat pack in the microwave. She is leaning over because of her abdominal pain and giving a thumbs up to the camera. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672708029789-2HQ6ASJ6ZMSE5KYL3QAC/IMG_2309.jpg My Blog - A Restful Winter Break - December 25th, 2022 A photo of Emma’s TV and computer showing her family in Texas on a Zoom video. Her brother is seen holding up a Chicago Bulls t-shirt in the camera. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672708029066-902T2FJKLJZAV7W16QR3/69387907789__F7F6F59F-9564-4507-9E79-AA0336599AC1.jpg My Blog - A Restful Winter Break - December 27th, 2022 A photo of the stage at the beginning of The Nutcracker at the Boston Opera House. It shows the view of the stage from the mezzanine and a drop of a large house painted on a cloud. https://www.livinginthelimbo.com/blog/entering-the-holidays-with-a-splash monthly 0.5 2023-01-03 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672704475788-JEUT9SGQPLIZPFFE5YEH/IMG_1997.jpg My Blog - Entering the Holidays With A Splash! - November 26th, 2022 A photo of Emma’s bedroom carpet on the night of the flooding. It shows a wet carpet with paper towels on it from the door almost to the desk of the room on the opposite wall. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672704480247-46RJIB4EJLVOMF0ZCD6D/IMG_1999.jpg My Blog - Entering the Holidays With A Splash! - November 26th, 2022 A photo of Emma’s living room couch folded out into a futon bed. She has put some throw blankets on it and moved her IV pole next to the makeshift bed. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672704477977-3BIA140I7US33MDVENR8/IMG_2016.jpg My Blog - Entering the Holidays With A Splash! - November 27th, 2022 A photo of the carpet during the following day showing the warping and buckling of the carpets coming up alongside some of the paper towels turning yellow from the water. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672704478458-DVWAMDCJ1CMSF36N8ON0/IMG_2037.jpg My Blog - Entering the Holidays With A Splash! - November 27th, 2022 A photo of the hard wood floor and bedroom carpet the evening of November 27th showing the damage done to the hardwood. https://www.livinginthelimbo.com/blog/a-very-emma-thanksgiving monthly 0.5 2023-01-02 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672695816537-U8JQDL1R5AJX4T0JIZKS/Screenshot+2023-01-02+at+4.40.53+PM.png My Blog - A Very ‘Emma’ Thanksgiving - November 18th, 2022 A screenshot of the table of contents page for Emma’s Family Thanksgiving Guidebook. It states the break up of the book as “guidelines,” “Emma’s notices,” “week itinerary,” “city safety and practices,” and “local restaurants”. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672695817010-1CJS8JRZIYOS8U12YS45/Screenshot+2023-01-02+at+4.41.40+PM.png My Blog - A Very ‘Emma’ Thanksgiving - November 18th, 2022 A screenshot from one of the paperwork pieces Emma made for Thanksgiving. It’s a spreadsheet titled “Cooking Location Sheet”. Along the left side it states each of the food items divided by “side dish,” “entrees,” and “desserts”. For each food item, an ‘X’ is placed in the matching medium that is used to cook it. Options listed are: “stovetop, oven, both, microwave, and neither”. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672695816212-FCU6LY7VISG2T6W2GQUH/Screenshot+2023-01-02+at+4.42.12+PM.png My Blog - A Very ‘Emma’ Thanksgiving - November 20th, 2022 A screenshot of the ‘run sheet’ for the day of cooking. It has the exact directions for each person in a live running time. This way each person can follow the steps directly. At the top it has a small spreadsheet of the overall timeline for the cooking order. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672695815625-S4YEQASUTZZQI753NE8M/IMG_2446.PNG My Blog - A Very ‘Emma’ Thanksgiving - November 19th, 2022 A photo of Emma on her tip toes hugging her brother as he arrives from the airport in her apartment. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672695811949-81TVWPXBJWG7CVGFVHUN/IMG_9810.jpg My Blog - A Very ‘Emma’ Thanksgiving - November 24th, 2022 A photo of Emma’s very colorful and decorative Thanksgiving table. A gingham lavender tablecloth is seen with pastel pink napkins and white leaf-shaped plates. Across the center of the table is a eucalyptus garland with fall flowers and white mini pumpkins placed in and around it. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672695815398-6653BSBM4A7XLIEVZ21O/IMG_9811.jpg My Blog - A Very ‘Emma’ Thanksgiving - November 24th, 2022 A photo of the food serving area by Emma’s kitchen. It is heavily decorated and colorful. The area is lined with pastel pink napkins and colorful dishes are placed on top. Each food item has handmade name tags and fairy lights are dispersed in between the dishes. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672695808159-ZS2YFR01SP2JU3MRVS6O/IMG_1928.jpg My Blog - A Very ‘Emma’ Thanksgiving - November 24th, 2022 A family photo of Emma, her brother, and her parents smiling posed in front of the Christmas tree they just set up. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672695808613-7D6R5J2FF26EJQXSRVQY/IMG_1952.jpg My Blog - A Very ‘Emma’ Thanksgiving - November 24th, 2022 A wide-shot photo of Emma’s living room at night showing her dad, brother, and mom all in their inflatable beds positioned facing the TV to watch the baking show. https://www.livinginthelimbo.com/blog/thankful-for-iron monthly 0.5 2023-01-02 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672686800092-0CMU4JYX6BJ4C763KBKU/IMG_2442.jpg My Blog - Thankful For Iron - November 2nd, 2022 An artistic photo of the wall with a window inside the hematology appointment room. A yellow biohazard box is seen on the wall next to a child’s star drawing that says “Make Your Own Recovery The First Priority In Your Life - Robin Norwood”. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672686803599-5HXTWX2DAJLANPIH29KB/IMG_2443.jpg My Blog - Thankful For Iron - November 2nd, 2022 A screenshot of a portal message that Emma sent her doctor that uses her “work talking style”. It says, “Absolutely - thank you for your efforts [name] in expediting this process; I got a call from pulmonology yesterday and an appointment has been scheduled for February 17th. I will be sure to keep my phone on for the call from genetics. Thank you again for your timely help! Have a great day!” https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672686803677-LB8UI9DRUPHWJ96KJ7EH/IMG_1444.jpg My Blog - Thankful For Iron - November 3rd, 2022 A photo of the inside of Emma’s fridge with her new TPN formula. It shows an empty fridge with only her TPN bags on the top shelf. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672686800146-TA7RNXUERA5PYFEHWKLT/IMG_2444.JPG My Blog - Thankful For Iron - November 7th, 2022 A photo of both sides of Emma’s “emergency help card”. The front side shows her name, birthdate, primary hospital, emergency contact, and some notes for the EMTs. It also mentions to “not pause, clamp, disconnect, and/or separate the backpack/TPN from Emma for any reason without verbal consent.” The back of the card has 2 acronyms spelt out showing what to do if Emma is awake in an emergency where she can’t help herself and what to do in an emergency where Emma is unconscious. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1672686802541-4VYI2TORSQGS7NETFJKT/IMG_1641.jpg My Blog - Thankful For Iron - November 15th, 2022 A selfie of Emma’s arm with her IV in her arm right before starting her iron infusion. She has on a pastel pink turtleneck and a matching pastel pink fall themed tube clip. https://www.livinginthelimbo.com/blog/victory-on-the-same-page monthly 0.5 2023-01-02 https://www.livinginthelimbo.com/blog/dont-hold-your-breath monthly 0.5 2022-12-21 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1671657778651-4BP6B4GW2EFGRH971CRH/IMG_2269.jpg My Blog - Don’t Hold Your Breath! - October 12th, 2022 A screenshot of Emma’s autonomic neurologists’ note after the appointment. It states that Emma, “has elevations in 7 interleukins as well as TNF, suggesting a potential underlying inflammatory process.” https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1671657788734-S3OKQPJMT3AJFV2275LK/IMG_2270.PNG My Blog - Don’t Hold Your Breath! - October 13th, 2022 A photo of Emma lifting up her shirt to reveal her super swollen abdomen, due to the amount of mucus she was digesting because of her cold/flu. https://www.livinginthelimbo.com/blog/boo-vaccine-side-effects monthly 0.5 2022-12-21 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1671651630292-B2LGND9ZKX3VONERUFBU/IMG_1055.jpg My Blog - Boo! Vaccine Side Effects! - October 6th, 2022 A selfie showing Emma’s green blazer and a part of her TPN bag inside of her doctor’s office. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1671651632525-95JQAMCJ30IHK6FAAYGV/Image.jpeg My Blog - Boo! Vaccine Side Effects! - October 8th, 2022 A selfie showing Emma’s face looking annoyed, holding an ice back on her forehead and a lollipop in her mouth. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1671651643181-K995UIUB61IM1Q46Z5D0/IMG_1123.PNG My Blog - Boo! Vaccine Side Effects! - October 10th, 2022 A selfie of Emma’s neck showing a swollenness to it at the base and center of the neck. https://www.livinginthelimbo.com/blog/revisiting-the-foot-injury monthly 0.5 2022-12-21 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664570039953-D2WGAZ49IHXP03XD1G5E/20220914_233202914_iOS.jpg My Blog - Revisiting the Foot Injury - September 14th, 2022 A selfie of Emma crying in a white shirt and purple gingham pants after trying to deal with figuring out the new school routine. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664570041372-MJA4RU6Y0AJD4VYXTE8W/20220919_022300387_iOS.jpg My Blog - Revisiting the Foot Injury - September 18th, 2022 A photo of Emma’s sketchbook open on her dining table showing a half colored image of a woman with a central line wearing a blue satin cowl neck maxi dress. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664570042090-RHC1O4PQJRPAB0293YO7/20220919_190657861_iOS.jpg My Blog - Revisiting the Foot Injury - September 19th, 2022 A selfie of Emma at her dermatology appointment wearing a blue medical face mask, a navy blue long sleeve and a bright pink salmon colored blazer. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664570043562-EBSDOWQ2TRG53CIIVB37/20220920_191028684_iOS.jpg My Blog - Revisiting the Foot Injury - September 20th, 2022 A selfie of Emma in bed during her rest day watching tv on her laptop wearing her pajamas and with her water bottle next to her. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664570045068-0DIR3HVFL3X56T2QOAJ2/20220921_123405215_iOS.jpg My Blog - Revisiting the Foot Injury - September 21st, 2022 A selfie of Emma at her orthopedic surgeon’s appointment wearing a blue medical face mask, a mauve sweater and a black and white houndstooth blazer. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664570044680-7MYKGV8VUIAF91Z97SQH/20220927_023856000_iOS.jpg My Blog - Revisiting the Foot Injury - September 26th, 2022 A selfie of Emma at home after classes wearing loose pajamas with her hair up and her TPN backpack slung over one shoulder. She also has on a green floral tube clip from Threadsofkindness. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664570048271-OOV18EUF1BDT9UPCNF45/20220929_212253676_iOS.jpg My Blog - Revisiting the Foot Injury - September 29th, 2022 A photo of an autumn themed puzzle Emma is a little more than half-complete with. The photo is taken upside down but shows the puzzle which is of three brownstone buildings in autumn. https://www.livinginthelimbo.com/blog/summers-ending-junior-years-beginning monthly 0.5 2022-10-02 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664469028778-JVYW74CH8LJQBRHEV9VJ/20220826_132321270_iOS.jpg My Blog - Summer’s Ending, Junior Year’s Beginning - August 26th, 2022 Emma taking a selfie in a full length mirror wearing show blacks with a black face mask on. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664469028432-ZZHJOLVHUQGT51B4LHD9/20220830_135620860_iOS.jpg My Blog - Summer’s Ending, Junior Year’s Beginning - August 30th, 2022 A selfie of Emma’s face backstage at the event wearing a black face mask and a black headset. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664469032042-DM9OZROHY7BPEV6RWHN6/IMG_0271.JPG My Blog - Summer’s Ending, Junior Year’s Beginning - September 1st, 2022 A photo of Emma holding her shirt up revealing her abdomen extremely bloated. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664469031388-0SMRSNPL7UOO1LUL0RC3/20220904_145811807_iOS.jpg My Blog - Summer’s Ending, Junior Year’s Beginning - September 4th, 2022 A photo of Emma lying down on her couch with her legs elevated after being forced to stop sweeping due to pain and nausea. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664469032724-S3ZFBXDOLHZSZCCTXR08/IMG_0469.JPG My Blog - Summer’s Ending, Junior Year’s Beginning - September 7th, 2022 A selfie of Emma’s outfit on the first day of school. She’s wearing a black tank top and blue jeans with a tan blazer on top. She has on a black and white star tube clip from ThreadsofKindness and a black and white polka dot mask. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1664469030991-D6HD24VWEXODLSDNKFBE/20220908_182253935_iOS.jpg My Blog - Summer’s Ending, Junior Year’s Beginning - September 8th, 2022 A selfie of Emma looking exhausted laying in her bed the day after her first day of school. https://www.livinginthelimbo.com/blog/cheers-to-a-year-on-tpn monthly 0.5 2022-09-29 https://www.livinginthelimbo.com/blog/the-continuation-of-inflammation monthly 0.5 2022-08-16 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1660492282353-DIO3Z1IXD8FG0ET5EO7X/IMG_9168.jpg My Blog - The Continuation of Inflammation - August 2nd, 2022 A photo of the palms of Emma’s hands showing her left hand visibly more swollen and red than the right. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1660492203510-2DIULCBYVPRFPBMGF1T8/IMG_9478.jpg My Blog - The Continuation of Inflammation - August 9th, 2022 A photo of Emma lying in bed with an ice pack on her forehead trying to cool down from being outside. She is wearing a black tank top and her Hickman line is showing. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1660492344373-ABK9GDQZ3DHYZBJ3AWYC/IMG_9712.jpg My Blog - The Continuation of Inflammation - August 9th, 2022 A close up selfie of Emma in a medical gown and a mask with her right hand together as she makes an expression to try and keep her sanity amongst the frustration. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1660492372052-VYXO6A4A0P6LPOW6W7XA/IMG_9713.jpg My Blog - The Continuation of Inflammation - August 9th, 2022 A full length selfie of Emma in the radiology department changing room with a gown on and a mask with her hands by her head making an expression that is showing how ridiculous the situation is. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1660492307813-PKD40FRPO2CPTLWM1RDM/IMG_9573.jpg My Blog - The Continuation of Inflammation - August 12th, 2022 A photo of Emma’s left hand completely blue except for her pointer finger because of lack of circulation. https://www.livinginthelimbo.com/blog/thoughts-filled-with-cream-of-rice monthly 0.5 2022-08-16 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659200854923-G0O7ONDW7SU57G6FMKCQ/20220706_102519127_iOS.jpg My Blog - Thoughts Filled with Cream of Rice - July 6th, 2022 A selfie of Emma in bed after eating some cream of rice. She looks disheveled and tired. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659200855032-GYQDLNGGCLG5WZQ7MHSO/20220711_220705657_iOS.jpg My Blog - Thoughts Filled with Cream of Rice - July 11th, 2022 A selfie of Emma in bed after doing too much coursework in one day and not evening out her energy. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659200859173-2CO6IRMNLVQRH597KIAI/20220719_140513501_iOS.jpg My Blog - Thoughts Filled with Cream of Rice - July 19th, 2022 A selfie of Emma face-planting into her bed with her TPN backpack on with fatigue after her virtual course meeting. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659200862562-OABTNWSWKN9KQOJTD6NU/20220726_051336639_iOS.JPG My Blog - Thoughts Filled with Cream of Rice - July 26th, 2022 A selfie of Emma in bed with her trash can and TPN backpack on the bed with her. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659200869977-HI4LJ7LWTE6HHE1NH8XO/20220727_144421292_iOS.jpg My Blog - Thoughts Filled with Cream of Rice - July 27th, 2022 A selfie of Emma at her desk wearing a black tank top and light brown blazer smiling at the camera. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659200874959-DFI14AHYR02PNP3OGJ8P/IMG_8586.PNG My Blog - Thoughts Filled with Cream of Rice - July 27th, 2022 A selfie of Emma on the floor lying on her side with breathing difficulties wearing the same outfit as the previous image. https://www.livinginthelimbo.com/blog/faulty-grounds monthly 0.5 2022-07-30 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659196200381-09TAIRYA1L67O1JERYHO/20220629_180552409_iOS.jpg My Blog - Faulty Grounds - June 29th, 2022 A selfie of Emma crying after she came home from her GI appointment. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659196214616-63K3Y9EHZY45ONN6F66M/20220629_210003000_iOS.PNG My Blog - Faulty Grounds - June 29th, 2022 A selfie of Emma upset sitting criss cross on her bedroom floor hugging a stuffed sloth-a gift her brother had gifted her for times she needed a hug but was alone. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659196212961-23WKEG2CZ142MHZTM8I2/20220704_152803645_iOS.jpg My Blog - Faulty Grounds - July 3rd, 2022 A photo of a blue reusable cupcake liner with a small portion of cream of rice inside. Beside it is a plastic fork. https://www.livinginthelimbo.com/blog/spending-a-day-like-han-solo monthly 0.5 2022-07-30 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659142563845-RW4XYAUOH116A4JBY6RT/20220613_160211000_iOS.jpg My Blog - Spending A Day Like Han Solo - June 13th, 2022 A photo of Emma wearing a navy blue and white polka dot blouse and white jeans and a backpack standing with her arms open in front of her mirror wall feature smiling. There are 24 pastel blue picture frames all the way up the wall forming one large mirror. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659142506949-R3O198AJUZLODIS7U7HX/20220613_203821250_iOS.jpg My Blog - Spending A Day Like Han Solo - June 13th, 2022 A half colored in fashion drawing. It is the same pencil sketch Emma had done at the park a month ago but one of the models is colored in using colored pencil. Its a light lavender top and tan dress pants with brown loafers. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659142509150-S3NZBKV8L89UW7GCQ6LJ/20220614_121856009_iOS.jpg My Blog - Spending A Day Like Han Solo - June 14th, 2022 A selfie of Emma in the elevator wearing a mask and giving a thumbs up as she heads to her autonomic testing. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659142512716-J4JNL3F63S8IQ6ZLV976/20220622_210953563_iOS.jpg My Blog - Spending A Day Like Han Solo - June 22nd, 2022 A photo of one of Emma’s posters in a light wood colored frame. There are cardboard boxes and other hanging materials dispersed on the floor. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659142512877-RXALZVHP8JGAY4HYQWOQ/20220623_011104343_iOS.jpg My Blog - Spending A Day Like Han Solo - June 22nd, 2022 A pencil sketch of a living room that is incomplete. There are some 2D shapes of where furniture should be and then a detailed shading of 2 armchairs and a large couch with patterned cushions. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659142516552-WGP0FPXYDPSBBUFPD2C0/20220623_122809966_iOS.jpg My Blog - Spending A Day Like Han Solo - June 23rd, 2022 A photo showing the completed frames hung above the couch. A pastel pink couch with pink and blue cushions is seen on an abstract sage, black and white rug. Above the couch are 3 New Yorker covers in pastel pink and blue in light wood frames. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659142516779-DV3EFQ7NQK385RWYBLSC/20220625_225116295_iOS.jpg My Blog - Spending A Day Like Han Solo - June 25th, 2022 A progress photo of Emma’s living room with the rug pulled out of the way and her TV stand deconstructed. She has trash bags underneath metal parts of the stand that are being painted white. She has the wooden shelves in different spots being covered with a lighter wood peel and stick contact paper. https://www.livinginthelimbo.com/blog/when-it-rains-it-pours monthly 0.5 2022-07-30 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659136708540-0F1K03P3JVFI61A6QUH7/IMG_4909.JPG My Blog - When It Rains, It Pours - May 26th, 2022 Emma laying on her couch with her knees up and her arms holding her upper abdomen. Her face is looking in the direction of the camera and she looks uncomfortable. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659136697388-FQ9NRNBRDSJ1C5RZA1D5/20220526_222449478_iOS.jpg My Blog - When It Rains, It Pours - May 26th, 2022 Emma during the same day as the previous photo-just in the evening. It’s a selfie of her before she heads off to the theatre. She is wearing blue jeans with black doc Martens, a black pussycat bow blouse with white abstract lines on it. Over top she has a black fitted blazer. She’s wearing a black and white polka dot mask and a matching black and white tube clip. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659136716991-DNNFHKWARFVUAIDOYMP2/20220531_171041000_iOS.PNG My Blog - When It Rains, It Pours - May 31st, 2022 A photo of Emma on the floor during a break in her virtual class. She has her arms over her abdomen and her knees by her chest. Her face is not visible but from her posture we can tell she’s in pain. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659136705543-B1KUB30IJ8CJZPWNJUN5/20220531_222108000_iOS.PNG My Blog - When It Rains, It Pours - May 31st, 2022 A selfie of Emma in bed later in the evening from the previous picture. She barely has her eyes open and looks fatigued. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659136703105-PHQ1ZEC94PI04D2AFQ5Z/20220602_190325329_iOS.jpg My Blog - When It Rains, It Pours - June 2nd, 2022 A vulnerable selfie of Emma crying right after arriving home from her primary care appointment. She is wearing a navy blue top and a black and white houndstooth blazer. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659136708825-4E5B84MWXMHGL7ZLOQSQ/20220603_154353593_iOS.jpg My Blog - When It Rains, It Pours - June 3rd, 2022 Another selfie of Emma in bed still dealing with the flare. She is wearing a grey pajama t-shirt and her hair is disheveled. Her under-eyes look dark and she seems tired. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659136705722-YHCLRKELFQU9OLVK689F/20220604_201424266_iOS.JPG My Blog - When It Rains, It Pours - June 4th, 2022 A photo of Emma’s table covered with cut up trash bags and picture frames being painted on top. There is a white picture frame being painted a pastel blue color. https://www.livinginthelimbo.com/blog/april-showers-brings-may-flowers-amp-endoscopies monthly 0.5 2022-07-29 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659127540623-V3QDBK2WGO36SY1LCY4D/20220516_143657949_iOS.JPG My Blog - April Showers Brings May Flowers & Endoscopies - May 16th, 2022 A photo of Emma’s kitchen after her dad helped her put up the last of the contact paper. The kitchen is a pastel green/blue color with white granite countertop stick on paper that looks really realistic. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659127549854-T5ZZFH2LW96Z3J4LEIBJ/20220516_194705777_iOS.JPG My Blog - April Showers Brings May Flowers & Endoscopies - May 16th, 2022 A selfie of Emma in bed right after vomiting and entering her house after completing the endoscopy. She is wearing a lavender t-shirt and her eyes are barely open. She looks very tired. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659127568881-ZT61J0BVDZ43WNQJ79W4/20220517_204607985_iOS.JPG My Blog - April Showers Brings May Flowers & Endoscopies - May 17th, 2022 The day after the endoscopy and Emma has on the same lavender shirt but has a white zip-up hoodie on top. She’s lying in bed looking super fatigued with her eyes still barely open. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659127580750-CH711GKY45W18AZ44VHS/20220521_150726002_iOS.jpg My Blog - April Showers Brings May Flowers & Endoscopies - May 21st, 2022 A photo of Emma’s dad in business professional clothing wearing a mask and looking at a marble statue inside of the museum of fine arts. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659127591287-SZ7G5RN47POLI9YLAZKW/20220521_173726000_iOS.PNG My Blog - April Showers Brings May Flowers & Endoscopies - May 21st, 2022 A photo of Emma standing in front of a railing inside the atrium of the museum of fine arts. She is wearing a black tank top and blue jeans, black doc Martens, and a black and white houndstooth blazer with a black and white polka dot mask. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659127595717-93DRAEZLF7Z2BEBY63VB/20220522_135212036_iOS.jpg My Blog - April Showers Brings May Flowers & Endoscopies - May 22nd, 2022 A photo of Emma’s friend wearing overalls and a face mask leaning against Emma’s dad who has a mask and sunglasses on holding a sketchbook and sketching at the park. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659127627741-X64KXG9KEUVD9DTMCNRW/20220522_143604012_iOS.jpg My Blog - April Showers Brings May Flowers & Endoscopies - May 22nd, 2022 A photo of the fashion drawing Emma completed at the park. It shows a blonde teenager in 2009 style clothing and chewing gum. The sketch is done in colored pencil. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659127631702-N0PMPBTC8RQ8C5WUYLV3/20220522_151435722_iOS.jpg My Blog - April Showers Brings May Flowers & Endoscopies - May 22nd, 2022 A photo of the second drawing Emma started at the park which shows a pencil sketch of a woman from the late 90s with short hair wearing a sleeveless blouse, dress pants, and loafers. https://www.livinginthelimbo.com/blog/revisiting-the-hunger-cravings monthly 0.5 2022-07-26 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658790451671-D8GGKVI452998A98QQMK/20220428_230020171_iOS.JPG My Blog - Revisiting the Hunger Cravings - April 28th, 2022 A selfie of Emma with an orange flavored lollipop in her mouth holding up the orange wrapper to the the camera looking excited and happy. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658790547747-R07JF67IBLPNBQDACU7R/IMG_8311.PNG My Blog - Revisiting the Hunger Cravings - May 6th, 2022 A screen capture from a video of Emma excitedly jumping up and down holding a box of “To-Go” Jif peanut butter cups. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658790468292-3GZX6K89SC6RM6O11R0D/20220507_172446307_iOS.JPG My Blog - Revisiting the Hunger Cravings - May 7th, 2022 A selfie of Emma sitting at her dining table with her laptop working on her blog. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658790478769-N9W9YZ6NHDCYKMJSGDP8/20220508_020745150_iOS.JPG My Blog - Revisiting the Hunger Cravings - May 7th, 2022 A selfie of Emma smiling holding up a bag of Starburst gum. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658790509568-1HBUKO8B4E937KG2U6FQ/20220510_194119816_iOS.JPG My Blog - Revisiting the Hunger Cravings - May 10th, 2022 An image of a strawberry jello cup with about a spoon size taken out from the cup which had already been eaten. This was close to the portion size Emma would eat in a sitting causing her to get symptoms. https://www.livinginthelimbo.com/blog/heading-into-summer-amp-flare-cycles monthly 0.5 2022-07-25 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658781420548-Y6D319UPSXKEM5BJSQ8U/20220412_233959813_iOS.JPG My Blog - Heading Into Summer & Flare Cycles - April 12th, 2022 A progress photo of Emma’s living room now with 3 posters hanging without frames above her couch that are covers of the New Yorker magazine in pastel pink and blue. There are also 2 small coffee tables that are white with wooden legs. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658781420948-WXEYQM07YOP66FMFSGE3/20220416_214228781_iOS.JPG My Blog - Heading Into Summer & Flare Cycles - April 16th, 2022 An inside look of Emma’s fridge which shows it completely empty except for 4 white lipid TPN bags and 2 clear non-lipid TPN bags. On the door cubby there are 2 brown light-proof bags that hold her vitamins to inject into the TPN. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658781423927-1V74SWFF10QU15ZTR43F/20220420_023842376_iOS.JPG My Blog - Heading Into Summer & Flare Cycles - April 19th, 2022 A photo of a rendering that Emma drew for fun of a woman wearing a 1920’s style blue gown with satin and lace along with a large brown fur coat. The drawing is done with colored pencil. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658781424444-5Y8UPPN1COC6VQY2AXZL/20220423_150545060_iOS.JPG My Blog - Heading Into Summer & Flare Cycles - April 23rd, 2022 A photo of a purple floral arrangement Emma made in an abstract line art white vase against her abstract line art wallpaper. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658781986469-8SVLYK1KDYKP37Q9DLQD/20220423_161116532_iOS.JPG My Blog - Heading Into Summer & Flare Cycles - April 23rd, 2022 A photo of an incomplete fashion drawing of a 2009 street style teen’s clothing. The image is taken on a flamingo patterned picnic blanket at the park. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658781988840-YGX1924T6YDVH1PGF32P/IMG_8295.PNG My Blog - Heading Into Summer & Flare Cycles - April 26th, 2022 A screen capture from a video of Emma celebrating after arriving back home from her last final exam. She is seen celebrating in her kitchen after walking in the door with her coat still on. https://www.livinginthelimbo.com/blog/moving-apartments-turning-20-amp-making-decisions monthly 0.5 2022-07-25 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/ab7adb88-8b11-4c33-96ce-29adab694122/Screen+Shot+2022-07-24+at+8.39.51+PM.png My Blog - Moving Apartments, Turning 20, & Making Decisions - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/e9a0deb5-f657-4d79-aae6-5e27b9d65e51/Screen+Shot+2022-07-24+at+8.40.04+PM.png My Blog - Moving Apartments, Turning 20, & Making Decisions - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658709361336-WN8N5MEWBXNRFZRTY0JW/20220325_193604008_iOS.JPG My Blog - Moving Apartments, Turning 20, & Making Decisions - March 25th, 2022 A photo of Emma’s new apartment empty with a light pink couch with rose gold legs and an abstract green white and black rug that has a low pile but is super soft. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658709361715-QT7SAMKYY0J3ZJ5TUHA0/20220401_011808346_iOS.JPG My Blog - Moving Apartments, Turning 20, & Making Decisions - March 31st, 2022 A progress photo of Emma’s apartment showing the dining space next to the couch that has a abstract face line art peel and stick wallpaper up. There are two light blue dining chairs with a missing dining table in front of the accent wall. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658709362080-34S19O9T76A1AKXNQHPZ/20220403_015553727_iOS.JPG My Blog - Moving Apartments, Turning 20, & Making Decisions - April 2nd, 2022 A selfie of Emma on her couch watching TV. She is wearing her pajamas and has a white throw blanket on. She’s holding the remote and smiling. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658709363501-44HNFEE7XFVC1L5S3881/20220405_212107849_iOS.JPG My Blog - Moving Apartments, Turning 20, & Making Decisions - April 5th, 2022 A progress photo of Emma decorating her kitchen with light green peel and stick contact paper. She also is putting on peel and stick white granite paper on the countertops. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658709364027-F6OJMLH4N6HYGZ6BGJB3/20220412_192954208_iOS.JPG My Blog - Moving Apartments, Turning 20, & Making Decisions - April 12th, 2022 A photo of Emma’s stage management vision board that she made out of foam and printed out paper with stickers. On the board she has things like: The MET Gala, The Oscars, New York Fashion Week, The Boston Ballet, and some film companies. https://www.livinginthelimbo.com/blog/back-in-the-norm-amp-prepping-to-move monthly 0.5 2022-07-24 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658705078256-9S23U4HS5OROGAL5B46K/20220313_194212910_iOS.jpg My Blog - Back in the Norm & Prepping to Move! - March 13th, 2022 An image of the 2 Smarties bags Emma ordered from Amazon. The bags are red and say “Smarties Originals” and had around 25 packs per bag. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658705078962-DTLYSYMN98IC89D59MGK/20220318_171538205_iOS.jpg My Blog - Back in the Norm & Prepping to Move! - March 18th, 2022 A photo of a corner of Emma’s bedroom piled with boxes and suitcases with items in her room. A rug can be seen along with a bed spread and crutches. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658705077352-VBV2GXQ4SOUE0SY6MQGQ/20220321_135143000_iOS.jpg My Blog - Back in the Norm & Prepping to Move! - March 21st, 2022 A screenshot of the table of contents of Emma’s interior design planning document. It has a pretty font and the page is a pastel pink with dark brown text. Some of the page topics include: visions and goals, furniture budget list, and inspiration and visualization of rooms. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658705080665-D4TKXHVOQ3STCA853IDY/20220321_185457582_iOS.JPG My Blog - Back in the Norm & Prepping to Move! - March 21st, 2022 A selfie of Emma outside at the public gardens wearing a polka dot face mask and a beige winter coat. Behind her is a blue sky and a bare tree. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658705083454-5LB1W6W2S8PHZGDTFYG8/20220324_201531417_iOS.jpg My Blog - Back in the Norm & Prepping to Move! - March 24th, 2022 A final photo of all of the boxes and suitcases all piled up in the corner of Emma’s bedroom. Her walls can be seen completely bare and Emma’s legs are seen showing she’s laying on her bed. https://www.livinginthelimbo.com/blog/small-sips-still-equals-big-flares monthly 0.5 2022-07-24 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658697193383-6LZ9Q0GHHJPHY7VOZQJX/20220306_212332248_iOS.JPG My Blog - Small Sips Still Equals Big Flares - March 6th, 2022 A photo of Emma hunched over wearing a hoodie and carrying a trash can and her nausea medications. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658697220642-R41FGJ199ZA1PF8Y4O3V/20220307_043823477_iOS.JPG My Blog - Small Sips Still Equals Big Flares - March 6th, 2022 A selfie of Emma walking into her bathroom with a trash can and feeling super nauseous. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658697225424-VIKFDAUB4TNPTYICLUC6/20220307_045552000_iOS.PNG My Blog - Small Sips Still Equals Big Flares - March 6th, 2022 A very vulnerable image of Emma in a lot of pain and wincing while trying to roll over in bed. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658697849890-LUXSLH5UOI415YDS8HDA/letter+eng.png My Blog - Small Sips Still Equals Big Flares - March 6th, 2022 A photo of the email sent to Emma’s medical team where she advocates that she would like to discontinue trialing foods due to the mental and physical toll it takes on her body. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658697236968-1IPR0EL9B7QR65LE2C3X/20220307_221338409_iOS.JPG My Blog - Small Sips Still Equals Big Flares - March 7th, 2022 A photo of Emma lying in bed looking extremely fatigued after not being able to sleep. https://www.livinginthelimbo.com/blog/shows-blood-labs-what-else-is-new monthly 0.5 2022-07-25 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658693437630-SKJJWWW3R5F0ZYR8JYC0/20220224_030139871_iOS.JPG My Blog - Shows, Blood Labs, What Else Is New? - February 23rd, 2022 A photo Emma took on her phone during tech rehearsal. It shows a stage with “tech-apocalypse” looking scenic design. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658693437290-FDLMWLS7CJE24CHK2ZDJ/20220301_143344588_iOS.JPG My Blog - Shows, Blood Labs, What Else Is New? - March 1st, 2022 A selfie of Emma crying on the floor of her bathroom after coming back from her GI appointment. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658693441197-DXMEEUJ0UE7YKJERBL9H/20220304_041435081_iOS.JPG My Blog - Shows, Blood Labs, What Else Is New? - March 3rd, 2022 A photo of the 3D model Emma made for her scenic design class. It depicts a luxurious Art Deco living room with marble floors and detailed rugs and beads for handles on doors and drawers. https://www.livinginthelimbo.com/blog/egg-the-size-of-a-cheerio monthly 0.5 2022-07-24 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658689868576-4U5KF1SBSCEXZ8D9Y87C/20220213_194256827_iOS.JPG My Blog - Egg the Size of A Cheerio… - February 13th, 2022 An image of the bowl of egg that Emma ate 2 small pieces from. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658689868161-632LV6BXZX38E7SGOSSB/20220214_185654262_iOS.JPG My Blog - Egg the Size of A Cheerio… - February 14th, 2022 A selfie of Emma laying in bed 1 day into her flare. She looks tired and unhappy. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658689869543-MNBFCN5QU78SL5IWGV7L/IMG_8209.jpg My Blog - Egg the Size of A Cheerio… - February 14th, 2022 A screen capture from a video of Emma trying to get to her front door to unlock the master lock. She has her TPN bag on her rolling medical cart and is hunched over on the floor holding a trash can. https://www.livinginthelimbo.com/blog/hunger-cravings monthly 0.5 2022-08-06 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658452714716-1JCHU42G7DEDIC1AKSDA/20220207_213656113_iOS.JPG My Blog - Hunger Cravings - February 7th, 2022 A selfie of Emma lying in bed after being super fatigued from coming back from class. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658452716278-2VYOYSUGF22Q22ECNATI/20220208_183036729_iOS.JPG My Blog - Hunger Cravings - February 8th, 2022 A photo of a line of peanut butter on a spoon-the common new snack Emma had 2-4 spoons of daily. https://www.livinginthelimbo.com/blog/shower-shakes-amp-fatigue monthly 0.5 2022-07-21 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658444628109-CTTZKEXMSG3O39SOCQ3H/20220204_160856167_iOS.jpg My Blog - Shower Shakes & Fatigue - February 4th, 2022 An image of the floorpan Emma drew by hand with little scale models of furniture that are cut out with pieces of paper so they can be arranged on the paper. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658444631901-V1MGED1NPW7TX0DHGIU1/20220204_220444555_iOS.JPG My Blog - Shower Shakes & Fatigue - February 4th, 2022 Some colored thumbnail sketches Emma drew of other areas within the apartment. The colors are mostly pastel pink, blue, and green. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658444633737-YYAQQ44UETFCCQA3SYT7/20220206_190257476_iOS.JPG My Blog - Shower Shakes & Fatigue - February 6th, 2022 A pencil sketch of a bench area by a window that Emma drew to think of what to do with a window space. https://www.livinginthelimbo.com/blog/finding-the-limits monthly 0.5 2022-07-21 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658438903035-QQ4FMIN541E8TW8WU5YX/20220118_181927519_iOS.jpg My Blog - Finding the Limits - January 18th, 2022 Emma after her first day of in person classes. Her dad and roommate surprised her and everyone is wearing party hats and smiling. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658438918997-YDGQMARJTOA1QSI69HMO/20220121_180351857_iOS.JPG My Blog - Finding the Limits - January 21st, 2022 A photo of Emma’s forearm with a needle in it during her 2nd iron infusion. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658438930443-C8GR5ORMIPZSG3XNM7PX/20220121_194915761_iOS.jpg My Blog - Finding the Limits - January 21st, 2022 A photo of Emma’s new clear non-lipid TPN bags inside of her fridge. Her vitamin bags are also seen inside which are in light-proof brown bags. Her roommates food is seen on the other shelf. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658438941042-Q2CP5HF1QY8HMFD0WBKV/20220122_224624859_iOS.jpg My Blog - Finding the Limits - January 22nd, 2022 A photo of Emma’s non-lipid TPN bag after the vitamins have been injected into it making the bag a transparent yellow. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658438950708-QAIEEWXE4H5E0GLDRFX9/20220122_231039273_iOS.JPG My Blog - Finding the Limits - January 22nd, 2022 A photo of the tubing from the yellow non-lipid bag that is entirely clear. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658438962850-2X4XLKKOB4DRUWENVVGR/20220127_195332612_iOS.JPG My Blog - Finding the Limits - January 27th, 2022 A photo of Emma’s circulation issues in her hands. The photo shows her left hand with 4 of her fingernails a dark purple color. https://www.livinginthelimbo.com/blog/liver-disease-anemia-and-ready-for-school monthly 0.5 2022-08-06 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658422302108-FSI9DZVF3J48LTF8L99L/20220112_144917296_iOS.JPG My Blog - Liver Disease, Anemia, and Ready for School! - January 12th, 2022 A photo of Emma wearing her lumens outside of her blue winter sweater. She has the lumens covered with a white and pink floral catheter cover. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658422328759-MH8NKX3JSJ6OQKBFW9N3/20220113_192329738_iOS.JPG My Blog - Liver Disease, Anemia, and Ready for School! - January 13th, 2022 Emma takes a selfie during her iron infusion showing the tubing taped to the outside of her sweater. She is sitting in an infusion chair and has a IV pole next to her. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658422353042-P2CBSOC78SFLIR1AI8K9/IMG_7980.jpg My Blog - Liver Disease, Anemia, and Ready for School! - January 14th, 2022 Emma in bed with her blinds closed and the lights off holding a water bottle as she’s in the fetal position in her bed. She looks tired and is covered by many blankets. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658422359075-3PM6VE7N2UCJ33VV1AYI/20220115_203803054_iOS.JPG My Blog - Liver Disease, Anemia, and Ready for School! - January 15th, 2022 Emma on day 2 with no pain medication in bed but this time with the blinds letting some light in. She is still covered in blankets and looks unwell. https://www.livinginthelimbo.com/blog/new-year-new-tubing monthly 0.5 2022-07-17 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658018374078-AVQ90484WQHIRZ0K7CP8/20220101_001252501_iOS.JPG My Blog - New Year, New Tubing - December 31st, 2021 A photo of a large display of fireworks outside of Emma’s apartment window very close by. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658018373239-U71GHO17ASUHEIM42A7S/20220101_221456596_iOS.JPG My Blog - New Year, New Tubing - January 1st, 2022 A photo of Emma crying during the evening of the new year due to her severe abdominal pain. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658437452144-6BGSUB42O98KDCSTX30H/20211213_211203251_iOS.jpg My Blog - New Year, New Tubing - December 13th, 2021 A panorama image of the CADD Solis Tubing Emma refers to in the story that is significantly longer than the new MOOG tubing which only has enough extension for her to be able to stand up with the bag below her. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658018374613-ANKLNP17RA2POV1ZS61T/20220104_024822675_iOS.JPG My Blog - New Year, New Tubing - January 3rd, 2022 A photo of Emma’s new tubing that is super thin and and shorter coiled up with a Christmas themed tube clip. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658018377002-OIPUXBQ71PD9VD04Z500/20220105_230255206_iOS.JPG My Blog - New Year, New Tubing - January 5th, 2022 A picture of Emma’s new pump that is very old and clunky. https://www.livinginthelimbo.com/blog/beginning-the-new-norm monthly 0.5 2022-07-16 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658006905534-PLO4FOHLKHPOZMX0VCP3/20211226_235708110_iOS.JPG My Blog - Vaccines On Top of Illness - December 26th, 2021 A photo of the dinner table with lots of rubber shavings on it from Emma carving out stamps from a rubber block. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658006924264-S2RYPO24EXA7Q1AQ0EBT/IMG_7793.jpg My Blog - Vaccines On Top of Illness - December 28th, 2021 A photo of Emma right before she left to get her cervical spine MRI done. She has on a christmas tree themed catheter cover and a winter tree tube clip on. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658006936053-F4Z8K1LQJ1B3D9MLH835/20211230_020453000_iOS.PNG My Blog - Vaccines On Top of Illness - December 29th, 2021 A photo of a thermometer showing Emma’s fever beginning after receiving her 3rd COVID booster vaccine. The temperature reads “100.2 degrees Fahrenheit”. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658006964037-L3UTRFF04ER9SESUYMSX/20211230_233117577_iOS.JPG My Blog - Vaccines On Top of Illness - December 30th, 2021 Emma takes a selfie of her Hickman line showing a new coiling method that held up her tubing better with the tubes wrapped in a circle around the griplock. https://www.livinginthelimbo.com/blog/happy-holidays-tpn monthly 0.5 2022-08-06 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658002755311-NKWRPQ86KFTTQC725BML/20211204_234309835_iOS.JPG My Blog - Happy Holidays TPN! - December 4th, 2021 A photo of Emma’s roommates and dad putting up ornaments on the Christmas tree. All of therm are wearing Christmas themed plaid pajamas. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658002758200-M2UXJYJOD6YOMCH6SA28/20211204_234832635_iOS.jpg My Blog - Happy Holidays TPN! - December 4th, 2021 A “family” style photo of Emma’s best friends, her dad and her in front of the Christmas tree. Everyone is making a goofy faces and poses. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658002763292-R9VCC2AN271RM3RB80Y4/20211206_233639288_iOS.JPG My Blog - Happy Holidays TPN! - December 6th, 2021 A photo of a beautifully professional looking wrapped gift. The wrapping paper is brown with sparkly red trucks on it. It has a red bow on top. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658002779958-BWWASR73KX0TVGUCHGUM/20211212_233845855_iOS.jpg My Blog - Happy Holidays TPN! - December 12th, 2021 A photo of Emma and her friends at the Seaport market in winter coats smiling under their masks in front of a large outdoor Christmas tree. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658002807279-56Z7HI14G3KYNI1XYRLH/20211215_030751593_iOS.JPG My Blog - Happy Holidays TPN! - December 14th, 2021 A photo of one of Emma’s roommates helping put on a scarf they gifted to Emma’s dad on him. It is a Real Madrid winter scarf which is her dad’s favorite soccer team. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658002817320-3QTYEXRM8MFVR4SOPWA1/20211215_045202192_iOS.jpg My Blog - Happy Holidays TPN! - December 14th, 2021 A photo of Emma, her dad, and her roommates with matching shirts that say “How do you dare?” and all making funny “strong” poses. They are all smiling and laughing. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658002831168-XRMWSWZ872HWW79ICOD5/20211221_021401403_iOS.JPG My Blog - Happy Holidays TPN! - December 20th, 2021 A photo of Emma’s Hickman line showing the new griplock and the trial and error of trying to manage her long tubing cables. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1658002839028-1J8BZU578K00A5YX1H32/20211225_143539514_iOS.JPG My Blog - Happy Holidays TPN! - December 25th, 2021 A photo of Emma’s TV in her living room on a virtual call with her mom and brother in Texas so they could unwrap gifts “together”. https://www.livinginthelimbo.com/blog/central-line-surgery monthly 0.5 2022-07-10 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1657494361164-40TUE9YE8GZ0BXYCGYG2/20211130_173613573_iOS.JPG My Blog - Central Line Surgery! - November 30th, 2021 A close up image of Emma’s chest showing the central line and a lot of her skin with orange iodine on it. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1657494395525-1O8OAYR1OYHSSHAC4YI9/20211130_174036934_iOS.jpg My Blog - Central Line Surgery! - November 30th, 2021 A photo of Emma lying in her bed at home right after surgery. She looks very exhausted and out of it. She is holding in her left arm the stuffed dog that the nurses gifted her. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1657494618052-LYEA3H6RT154VQLGCTJ8/20211130_195007016_iOS.jpg My Blog - Central Line Surgery! - November 30th, 2021 A photo of Emma’s right wrist which shows blood and bruising from where the nurses tried to start and IV. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1657494433886-MDZKHDWYA9Y5UXAITNA2/20211130_195254613_iOS.JPG My Blog - Central Line Surgery! - November 30th, 2021 A close-up of the Hickman line and the pressure dressing on Emma’s neck which is folding her skin preventing her from holding her neck straight. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1657494452838-HGC7AXO890GWVFA8IQDJ/20211130_232229592_iOS.JPG My Blog - Central Line Surgery! - November 30th, 2021 An image of one of Emma’s bruised fingers from all of her glucose blood pokes. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1657494769020-E5ZBMBQQ9JKPIIQFID21/20211202_033903788_iOS.jpg My Blog - Central Line Surgery! - November 30th, 2021 An image of Emma’s left arm with a pressure dressing on top of where her PICC line used to be. https://www.livinginthelimbo.com/blog/happy-thanksgiving-leave-an-empty-plate monthly 0.5 2022-08-06 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656294784056-E0OUJDLY7HM4328U4Y52/IMG_6967+copy.PNG My Blog - Happy Thanksgiving! Leave An Empty Plate! - November 23rd, 2021 A photo of Emma hugging her brother in the airport for the first time in a year. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656294751248-D5XTAE6GC866K75HBS46/20211123_201247179_iOS.jpg My Blog - Happy Thanksgiving! Leave An Empty Plate! - November 23rd, 2021 Emma asleep on a couch with her TPN backpack on the floor beside her with her dog ‘Simba’ asleep next to her. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656294806264-G1GFO0GEJMKKPCV94OQR/20211126_205820139_iOS.jpg My Blog - Happy Thanksgiving! Leave An Empty Plate! - November 26th, 2021 A selfie of Emma’s family all wearing masks outside sitting at a table in an outdoor mall. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656294821710-FNBFFL9FW4PC4XQBCSYU/20211126_213755865_iOS.jpg My Blog - Happy Thanksgiving! Leave An Empty Plate! - November 26th, 2021 Emma, her mom, and her brother all standing next to each other in front of a large outdoor display Christmas tree. They can be seen laughing under their masks. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656294824537-N703M7NQ6L1R7WOB51CA/20211126_223527634_iOS.jpg My Blog - Happy Thanksgiving! Leave An Empty Plate! - November 26th, 2021 A photo of Emma and her brother standing next to each other in front of their Christmas tree. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656294830007-VOGFSAULYAZI8ASSPSSW/20211127_034453467_iOS.jpg My Blog - Happy Thanksgiving! Leave An Empty Plate! - November 26th, 2021 Emma’s family sitting at the dining table all concentrating on decorating the best gingerbread house. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656294834912-FREJ9998E0GR0MPZL7PB/20211127_043925327_iOS.JPG My Blog - Happy Thanksgiving! Leave An Empty Plate! - November 26th, 2021 A photo of the gingerbread village Emma created after everyone decorated their gingerbread houses. Powdered sugar was added for snow along with tiny fairy lights for visual affect. https://www.livinginthelimbo.com/blog/searching-for-the-other-problems monthly 0.5 2022-06-27 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656290938229-O3A0XPXTFVCQ6VTRJDDO/20211113_003018927_iOS.JPG My Blog - Searching For the ‘Other’ Problems - November 12th, 2021 A photo of one of the medical supply carry-on bags. On the bag is a red tag labeled “medical bag”. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656290960241-5B6SPLOG16BAAG1VFJM9/20211113_192127494_iOS.JPG My Blog - Searching For the ‘Other’ Problems - November 13th, 2021 Emma’s new bag pin that has a pastel rainbow background with the words, “please offer me a seat” on it. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656290971853-9YRAQND0S4SF95N5YYQN/20211115_151920851_iOS.jpg My Blog - Searching For the ‘Other’ Problems - November 15th, 2021 Emma smiling under a medical mask giving a thumbs up at her doctor’s appointment. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656290976812-63DWYBAS9JMP3AIJQWPD/20211120_221202515_iOS.JPG My Blog - Searching For the ‘Other’ Problems - November 20th, 2021 A photo of a carry-on suitcase open with bubble wrap lining the inside. This bag would later be packed with ice to hold bags of TPN. https://www.livinginthelimbo.com/blog/big-strides-able-to-walk monthly 0.5 2022-08-06 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656273664561-ZN8MHPIRWNM44GK0J213/20211030_171724092_iOS.jpg My Blog - Big Strides! Able to Walk! - October 30th, 2021 Emma hugging her best friend/roommate on their way to watch a theatre show from their school. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656273671039-KEOCCP959LI8BQHLL3SD/Screen+Shot+2022-06-26+at+4.00.08+PM.png My Blog - Big Strides! Able to Walk! - November 3rd, 2021 A letter written by Emma to her GI team trying to clarify communication issues. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656273680026-9AMG0F7GCXONN4BTQ047/20211106_152457153_iOS.jpg My Blog - Big Strides! Able to Walk! - Novembre 6th, 2021 Emma after a haircut in an elevator wearing a winter coat, scarf, and mask. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656273692545-RKIGQN6ITZW2WKRH7M5G/20211106_191703911_iOS.JPG My Blog - Big Strides! Able to Walk! - November 6th, 2021 A picture of a 'Friends’ Thanksgiving themed tube clip and matching catheter cover from Threads Of Kindness Co. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656273700606-21S1FRBCINKYE91Q0A3P/Screen+Shot+2022-06-26+at+4.00.27+PM.png My Blog - Big Strides! Able to Walk! - November 8th, 2021 A second follow-up letter from Emma to her GI team to again, try and clarify things. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656273708944-94R2FM2JHN346XKZDI9F/20211112_000913828_iOS.JPG My Blog - Big Strides! Able to Walk! - November 11th, 2021 Emma, her dad, and her friends in their living room getting ready to play card games. https://www.livinginthelimbo.com/blog/uh-oh-i-ate-mashed-potatoes monthly 0.5 2022-06-26 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656267895674-DV5ESU6FCPWVCB2OCNE0/20211021_190048830_iOS.JPG My Blog - Uh-Oh I Ate Mashed Potatoes! - October 21st, 2021 Emma crying covering her mouth from the pain of the mashed potato flare. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656267907962-N4W05VFX2NTCFIKKDOCP/20211021_194959673_iOS.JPG My Blog - Uh-Oh I Ate Mashed Potatoes! - October 21st, 2021 The bouquet of bright yellow, orange, and pink flowers sent from Emma’s dad’s coworkers. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656267919849-W72C86C29XCH06JK7ZT1/Screen+Shot+2022-06-26+at+2.22.46+PM.png My Blog - Uh-Oh I Ate Mashed Potatoes! - October 21st, 2021 A letter written by Emma that was sent to her medical team regarding her plan moving forward (the overview of the content is written in the article above). https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656267929692-HU6DX79SLQP76FNITR8L/20211023_185027850_iOS.jpg My Blog - Uh-Oh I Ate Mashed Potatoes! - October 23rd, 2021 Emma asleep in bed during the day after finally getting some peace in her sleep from her pain. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656267936540-H2AA04AYSB6Q5ZWNDO46/20211027_152505850_iOS.jpg My Blog - Uh-Oh I Ate Mashed Potatoes! - October 27th, 2021 Emma sitting in a chair resting on her way to physical therapy. She’s dressed in a winter coat and scarf. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1656267950031-TFYHHZCCBKYMLJSZHRDR/20211028_012956115_iOS.JPG My Blog - Uh-Oh I Ate Mashed Potatoes! - October 27th, 2021 A picture of Emma’s new TPN backpack from MightyWell. It shows lots of colorful medical pins and a stage management pin. There is a red iron-on patch that states, “parenteral feeding equipment do not separate”. https://www.livinginthelimbo.com/blog/which-came-first-the-chicken-or-the-egg monthly 0.5 2022-06-08 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654727538705-MASMH21TFFNI2E01DO9Q/20211019_124719893_iOS.JPG My Blog - Which Came First, The Chicken or The Egg? - October 19th, 2021 Emma takes a selfie in front of a mirror standing up on her own! She’s wearing black doc Martens, white sweatpants and a pastel light blue sweater. She has on a matching light blue butterfly tube clip. https://www.livinginthelimbo.com/blog/adjusting-on-the-tightrope monthly 0.5 2022-06-08 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654723135015-ZFV7UDT5ALMEU64BX1H8/20211016_214652318_iOS.jpg My Blog - Adjusting On the Tightrope - October 16th, 2021 An image of paper haunted house decorations for Halloween. Emma, her dad, and her roommate worked together to make these little houses from a craft kit and put tea lights inside to light them up. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654723120793-GPERGES1QF40FH7X8E1J/20211018_213546526_iOS.JPG My Blog - Adjusting On the Tightrope - October 18th, 2021 An image of Emma’s computer screen beginning a 3D draft of possible designs for the inside of her future first solo apartment. The image shows a cabinet shelving unit with some flowers on top and a dining chair beside it. https://www.livinginthelimbo.com/blog/new-doctors-more-tests-amp-still-no-answers monthly 0.5 2022-06-08 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654719305904-8N2OFSIZSEEZCY71V9DD/20211011_143410417_iOS.jpg My Blog - New Doctors, More Tests & Still No Answers - October 11th, 2021 Emma sitting in her wheelchair with white matching sweats and zip-up hoodie with a green t-shirt. She has her glasses and a face mask on and her hands are clasped together. Her eyes are watery from crying getting out of the Lyft. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654719307410-GJKI773OHNBK1O3OBLN7/20211015_200701275_iOS.jpg My Blog - New Doctors, More Tests & Still No Answers - October 15th, 2021 Emma’s Dad takes a photo of her sitting on a bench outside on the sidelines of the kickball field. Emma is wearing a mask and is making a funny gesture to her dad about the game. https://www.livinginthelimbo.com/blog/ges-you-are-my-nemesis monthly 0.5 2022-06-08 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654714074059-0DLBBH2H14711W586F25/20211008_133207333_iOS.JPG My Blog - G.E.S. You Are My Nemesis! - October 8th, 2021 Emma takes a selfie in the waiting room before the Gastric Emptying Study. She is wearing a lavender t-shirt with a white zip-up on top. She has on her glasses and a blue medical mask. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654714079004-2N90O41SVLY7JWFEQ94D/20211010_190924662_iOS.jpg My Blog - G.E.S. You Are My Nemesis! - October 11th, 2021 Emma lying in bed asleep after being in severe pain 3 days after her emptying study. Her roommate lays next to her asleep. https://www.livinginthelimbo.com/blog/tubie-clips-amp-wheelchair-gear-prepped-to-face-the-world monthly 0.5 2022-06-08 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654708450809-U7F0JMA1C4LLW4N2SOI1/20211003_180454451_iOS.jpg My Blog - Tubie Clips & Wheelchair Gear - Prepped to Face the World - October 3rd, 2021 A photo of Emma sitting in her wheelchair wearing her TPN bag on her shoulders and with a polka dot medical mask on her face. She is parked in front of some poinsettias in the public gardens. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654708502330-783XRQ5RGCBXKX3D96K6/20211005_214437036_iOS.JPG My Blog - Tubie Clips & Wheelchair Gear - Prepped to Face the World - October 5th, 2021 A photo of the Amazon wheelchair backpack hanging off the back of the wheelchairs handlebars. It’s all black with a small pin that says “stage manager” on it. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654708505116-QAGP5JZEIQ6LQ4CLBOD7/20211005_214105085_iOS.JPG My Blog - Tubie Clips & Wheelchair Gear - Prepped to Face the World - October 5th, 2021 A photo of the laminated packing list for going out that is attached to the wheelchair backpack. It states, “2 saline syringes, 2 heparin syringes, ondansetron, oxycodone, cyclobenzaprine, blood pressure cuff, pulse oximeter, water bottle.” https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654708521969-4VGALZJC3PRRNY39V7GA/20211007_221250924_iOS.JPG My Blog - Tubie Clips & Wheelchair Gear - Prepped to Face the World - October 7th, 2021 An image of Emma’s TPN tubes coiled up neatly with an Etsy light blue butterfly tubie clip buttoned around the tubes. The clip is attached to Emma’s pajama shirt. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654708533477-G15R1WLX1VNSZN27TF43/20211008_020757027_iOS.JPG My Blog - Tubie Clips & Wheelchair Gear - Prepped to Face the World - October 3rd, 2021 An image from the side of the thickness of Emma’s medical binder. The top of the binder has lots of colorful motivational stickers. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654708568922-5PYX6U7K9BBJ0FXBDHHB/20211006_021933910_iOS.JPG My Blog - Tubie Clips & Wheelchair Gear - Prepped to Face the World - October 5th, 2021 A photo of Emma’s PICC arm with the PICC sleeve pulled down revealing the very red and irritated with some blisters right against her dressing. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654708536286-QTE0YF8RLNWCG215JP6E/20211007_204614906_iOS.JPG My Blog - Tubie Clips & Wheelchair Gear - Prepped to Face the World - October 7th, 2021 An image showing a close up of the handmade armrest organizer that Emma made by sewing velcro to a pencil bag. https://www.livinginthelimbo.com/blog/wheelchairs-amp-physical-therapy monthly 0.5 2022-06-01 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654119052847-XYB4B2FB4F0LTKB8F7R3/20210911_224736172_iOS.jpg My Blog - Wheelchairs & Physical Therapy - September 11th, 2021 Emma is sitting up in her bed with her roommate beside her. Laying in front of both of them is her roommates labradoodle “Gypsy”. Emma and her roommate are petting the dog. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654119061176-F9HVGEMRUMP4TNF0RJXX/20210913_112045381_iOS.jpg My Blog - Wheelchairs & Physical Therapy - September 13th, 2021 Emma is wearing sweatpants and her pajama top sitting in her wheelchair with a mask on. She is headed to a doctor’s appointment. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654119067833-D6TKD68VVWRNX8YUJIHI/20210919_164602680_iOS.jpg My Blog - Wheelchairs & Physical Therapy - September 19th, 2021 Emma is at the public gardens in her wheelchair wearing a t-shirt and sweatpants with a mask on. Emma’s roommate is on a bench beside her smiling. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654119088283-JOVDC6RW7LJ4DM45N7AV/20210921_021705507_iOS.jpg My Blog - Wheelchairs & Physical Therapy - September 20th, 2021 A photo of Emma’s “daily activity chart” that she made over the course of many weeks in bed. It shows a large medication regiment along with velcro cards for her symptoms that day. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654119094789-8SCRQVENEF4JZK33Q88W/20210921_025303604_iOS.JPG My Blog - Wheelchairs & Physical Therapy - September 20th, 2021 A photo of a weekly pill organizer that has lots of pills and is broken up by morning, midday, evening, and night. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654119106219-H8ZPFYEN8MUV6PJF93QN/20210923_181839289_iOS.JPG My Blog - Wheelchairs & Physical Therapy - September 23rd, 2021 A selfie of Emma crying on an emotionally and mentally heavy day showing the ups and downs of chronic illness. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654119115390-SHW86PPEINI84IZ31AHW/20210926_213254162_iOS.JPG My Blog - Wheelchairs & Physical Therapy - September 26th, 2021 An image of a sticker by number book that has an abstract geometric image of colorful birds. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654119144109-PFO55SPV079TUW8B4PZI/20210930_205641400_iOS.jpg My Blog - Wheelchairs & Physical Therapy - September 30th, 2021 Emma laying in bed with her roommate beside her both asleep. https://www.livinginthelimbo.com/blog/the-line-infection-scare monthly 0.5 2022-06-08 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654067898273-SKSSC1YYGJWUWR8HAPOK/20210910_032709715_iOS.JPG My Blog - The Line Infection Scare - September 9th, 2021 Emma takes a fatigued selfie with a blood pressure cuff on in the ED in the semi-private room. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654067907061-39MRHZ4X1UB8YOCYQSBZ/20210910_041542398_iOS.JPG My Blog - The Line Infection Scare - September 10th, 2021 Emma takes a selfie in her inpatient room in the pediatric GI ward. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654067912946-0VRGHVT1ZMKJ0B14Q0NI/20210910_041622303_iOS.JPG My Blog - The Line Infection Scare - September 10th, 2021 Emma takes a photo of the super tiny and thin few cables for her heart monitor that the pediatric unit uses (as compared to the 5 large cables used for adults). https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1654067915711-R79LAN7AZJGAAAH4KECD/20210910_042358661_iOS.JPG My Blog - The Line Infection Scare - September 10th, 2021 Emma takes a photo of her view from her bed in the pediatric inpatient room. https://www.livinginthelimbo.com/blog/is-this-the-routine monthly 0.5 2022-05-30 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1653934462648-IJDW5HZNFERY2EP9JXOW/20210830_013622150_iOS.JPG My Blog - Is This the Routine? - August 29th, 2021 An image of MightWell’s lavender PICC sleeve unfolded so the lumens are hanging out. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1653934490206-RZ3UNFBZR3VQ1BV7K2MG/20210831_155937237_iOS.JPG My Blog - Is This the Routine? - August 31st, 2021 Emma throwing a surprise for her roommate on their first day of school. Emma and her roommate are seen with party hats on smiling at the camera. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1653934503293-DU42AIPL52STHRN300KM/20210906_143327960_iOS.jpg My Blog - Is This the Routine? - September 6th, 2021 A photo of Emma asleep in her bed in a funny position with her legs up and her arms over her head. https://www.livinginthelimbo.com/blog/thats-some-serious-cardio monthly 0.5 2022-05-30 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1653931769074-6G2IRZHD2FRZLACZ2MFP/20210826_164923076_iOS+2.jpg My Blog - That’s Some Serious Cardio! - August 26th, 2021 Emma in bed petting a friend’s dog. Emma sits in bed petting a shitzu while working on her laptop. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1653931516020-EOWXSATC6QL72CQ4LPYQ/20210827_160907241_iOS+2.JPG My Blog - That’s Some Serious Cardio! - August 27th, 2021 Emma made it to her couch and is sitting with a black plaid blanket on top of her. She has her TPN backpack beside her and is smiling at the camera. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1653931517519-3MIR3B1DINYB42JNNJW1/20210827_193507450_iOS+2.JPG My Blog - That’s Some Serious Cardio! - August 27th, 2021 A photo of the PICC line close up with 2 lumens hanging out and a red mark by the bio patch. https://www.livinginthelimbo.com/blog/ready-to-go-home monthly 0.5 2022-05-30 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1653928393958-8131DCX0WNS3QIXTNMD9/20210824_032620954_iOS.JPG My Blog - Ready to Go Home? - August 23rd, 2021 Emma laying in her bed with a neck pillow supporting her arm with the PICC line. Next to her bedside is an IV pole with her TPN bag. She also has a small bookshelf next to her bed with all of her medications and medical supplies. https://www.livinginthelimbo.com/blog/overextended-stay monthly 0.5 2022-05-25 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1653501946484-K9RP0VH1YG1XWSW0YT3H/20210820_165418003_iOS.JPG My Blog - Overextended Stay - August 20th, 2021 Emma smiling in her hospital bed after getting her more customized TPN. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1653501963178-327QH3E79PFIRXW4909F/20210820_190758730_iOS.JPG My Blog - Overextended Stay - August 20th, 2021 Emma laying in bed making a funny pose for her brother on FaceTime. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1653501969625-EPFL08YDRGDZVITSRKZ7/20210820_212319401_iOS.JPG My Blog - Overextended Stay - August 20th, 2021 Emma in bed smiling reading a card that her physical therapist gave. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1653501974203-CF7WX09383GLR2QZPY2H/20210822_140359142_iOS.JPG My Blog - Overextended Stay - August 22nd, 2021 Emma in bed showing her wet hair after her “shower cap shower”. https://www.livinginthelimbo.com/blog/lets-try-this-again-ir-replacements monthly 0.5 2022-05-19 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1652953159232-D66MOEA42HG6AOD30VYF/20210819_222810548_iOS.JPG My Blog - Let’s Try This Again! I.R. Replacements - August 19th, 2021 Emma in bed with colorful heart monitor tubes coming out of her bed gown. She also has multiple IV lines running into her PICC Line and IV. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1652953172662-85W12NJY9A4VVWBV3FKQ/20210819_222817890_iOS.JPG My Blog - Let’s Try This Again! I.R. Replacements - August 19th, 2021 A close up of the labels the nurses made to distinguish the different tubes. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1652953185353-G2RHIIW8RHYTV2MH95OK/20210819_222833602_iOS.jpg My Blog - Let’s Try This Again! I.R. Replacements - August 19th, 2021 An image of the different liquids Emma was on. There’s saline and a yellow bag which is her generic TPN. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1652953198072-AW8V2BKRX1UEJ9CEJ6KR/20210820_135843513_iOS.JPG My Blog - Let’s Try This Again! I.R. Replacements - August 19th, 2021 A close up of the PICC insertion site after the dressing nurses came to cut off the stitches and clean the area. https://www.livinginthelimbo.com/blog/picc-placed monthly 0.5 2022-05-18 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1652839956578-H9JK7SM0K15VTEEMVB9Z/20210818_211545588_iOS.JPG My Blog - PICC Placed…? - August 18th, 2021 Emma after having her PICC line placed and the line coiled. She is in bed with a towel over her head asleep. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1652839962187-CDTGJ234DOOELN9X1V89/20210819_093437100_iOS.JPG My Blog - PICC Placed…? - August 19th, 2021 Emma awake at 5:34 a.m. showing her 1st PICC line that doesn’t work and her IV site that was still giving fluids bruised. https://www.livinginthelimbo.com/blog/the-rollercoaster-of-being-hospitalized monthly 0.5 2022-05-11 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1652289915294-84C4HCR7D7GPMIA56IYT/20210817_180005297_iOS.jpeg My Blog - The Rollercoaster of Being Hospitalized - August 17th, 2021 Emma right after an esophagus flare with hives on her neck. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1652289987308-EQHVMUE61MQOVYCLH98H/20210818_025436612_iOS.JPG My Blog - The Rollercoaster of Being Hospitalized - August 17th, 2021 Emma in the ED after getting her sugar replenished. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1652290054296-0N7WF6LNVTMM3UP3IHI9/20210818_020749668_iOS.JPG My Blog - The Rollercoaster of Being Hospitalized - August 17th, 2021 Emma’s fingers with bandaids after getting them pricked for blood sugar testing. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1652290066228-OXN4CPOEHOULTBT3J1QN/20210818_123456506_iOS.JPG My Blog - The Rollercoaster of Being Hospitalized - August 18th, 2021 Emma in her GI inpatient room. https://www.livinginthelimbo.com/blog/the-new-symptoms-storm monthly 0.5 2022-05-05 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651738403948-EHEJRO7SZ6HQHV76XI9U/20210730_001940705_iOS.jpeg My Blog - The New Symptoms Storm… - July 29th, 2021 Emma during her first “breathing flare” sitting as still as possible on the floor with a pillow holding her head. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651738408840-1HEGS7Q8N3KTRF2WFJDV/20210730_110604245_iOS.JPG My Blog - The New Symptoms Storm… - July 30th, 2021 Emma showing an image of a stuffed animal frowning as she begins an abdominal flare. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651738414253-LAFT39B8LHL3G64GDFII/20210802_195438389_iOS.JPG My Blog - The New Symptoms Storm… - August 2nd, 2021 Emma in a hospital gown and pants as she heads in for her 2nd MRI for her foot. https://www.livinginthelimbo.com/blog/the-escalation-my-dad-enters-into-the-flare monthly 0.5 2022-05-05 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651732820105-GFBVYEDENWTBR9Q2FOX5/20210727_203905999_iOS.jpeg My Blog - The Escalation - My Dad Enters Into the Flare - July 27th, 2021 Emma’s dad arrives in Boston and sees Emma asleep in her bed. https://www.livinginthelimbo.com/blog/second-flare-feeling-prepared monthly 0.5 2022-05-05 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651729969820-QWD0W8EP7XORVQB2TLJ5/20210712_095121179_iOS.JPG My Blog - Second Flare, Feeling Prepared? - July 12th, 2021 Emma sleeping propped upright to reduce acid reflux. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651730155897-H4P7PKVGPUIG8K145ONO/20210718_051426235_iOS+2.jpg My Blog - Second Flare, Feeling Prepared? - July 18th, 2021 The concoction of medications on Emma’s nightstand along with a trash can and peanut butter. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651730177110-58TXJETKJXPR7NWEQUFO/20210724_074745827_iOS.JPG My Blog - Second Flare, Feeling Prepared? - July 24th, 2021 Emma up all night from one of her flares. https://www.livinginthelimbo.com/blog/dont-you-forget-about-me monthly 0.5 2022-05-05 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651714397592-SRSCIBHFCIFWH3Z888GA/20210624_152543708_iOS.JPG My Blog - Don’t You Forget About Me! - June 24th, 2021 Emma in the emergency room after calling 911 for abdominal pain. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651714408948-L4871XI6DLQY6YVNPI85/20210709_170052047_iOS.JPG My Blog - Don’t You Forget About Me! - July 9th, 2021 Emma in bed 16 days into the flare. https://www.livinginthelimbo.com/blog/black-amp-blue-in-crutches-too monthly 0.5 2022-05-05 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651709652387-SVOOVT9ZQJHCD01O4AQP/20210528_173447008_iOS.JPG My Blog - Black & Blue, In Crutches Too - May 28th, 2021 Emma giving a thumbs up to the camera the 2 days after going to the ED for her foot. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651709682113-6WVVXD8VHE0RT1WMQPUY/20210616_133415582_iOS.JPG My Blog - Black & Blue, In Crutches Too - June 16th, 2021 Emma smiling as she gets ready for her first day back at work. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651709685383-DMWQFJBVAVUGMYF36ADG/20210619_180953184_iOS.JPG My Blog - Black & Blue, In Crutches Too - June 19th, 2021 Emma elevating her feet on a chair during her lunch break at work. https://www.livinginthelimbo.com/blog/move-amp-youll-bruise-the-hotel-fire-crutches-story monthly 0.5 2022-05-04 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651690475951-BS0QK2I5H8J4UD4PFNWN/20210523_210848875_iOS.JPG My Blog - Move & You’ll Bruise - The Hotel, Fire, Crutches Story - May 23rd, 2021 Emma in an elevator carrying a duffle bag to a hotel. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651690489313-XHHDCRF9OW8EOAK5LRQK/20210524_143745125_iOS.JPG My Blog - Move & You’ll Bruise - The Hotel, Fire, Crutches Story - May 24th, 2021 Emma in her work clothes on her way to work. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651690505607-NIVIAMP9RQSLRX1KX92D/20210526_182529910_iOS.JPG My Blog - Move & You’ll Bruise - The Hotel, Fire, Crutches Story - May 26th, 2021 Emma in the 2nd hospital waiting room after injuring her toe. https://www.livinginthelimbo.com/blog/the-college-food-trials-amp-tribulations monthly 0.5 2022-06-02 https://www.livinginthelimbo.com/blog/are-these-boots-made-for-walking monthly 0.5 2022-05-25 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651526901098-190KVXU5JMGCOVN42TZ2/20200904_234227000_iOS.jpg My Blog - Are These Boots Made for Walking? - September 4th, 2020 Emma is sitting on some steps outside wearing her Doc Martens and CAM Boot. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651526976489-N9XW5RANBBJUA0YSF7J4/20200916_164751511_iOS.JPG My Blog - Are These Boots Made for Walking? - September 16th, 2020 An image showing Emma’s Doc Martens on first walk without her CAM boot on. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651526990756-W52QLGNLRS5A772E0666/20200918_145406307_iOS.JPG My Blog - Are These Boots Made for Walking? - September 18th, 2020 An image showing the different foot pads Emma tried to reduce her pain. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651527006174-0IDTHVGB31IJ0SOWJDDF/20210322_174108176_iOS.JPG My Blog - Are These Boots Made for Walking? - March 22nd, 2021 An image of the bottom of the Dananberg Orthotic. https://www.livinginthelimbo.com/blog/endoscopies-amp-knee-scooters-ready-for-college monthly 0.5 2022-05-03 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651521251387-K5L98T20YR4XZPTNCNPI/20200717_152644405_iOS.JPG My Blog - Endoscopies & Knee Scooters- Ready for College! - July 17th, 2020 Emma’s symptoms were flaring so she is asleep in bed while her brother balances things on her head. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651520553083-QC0BG912EC2V6ZIWWSMP/20200720_175101712_iOS.JPG My Blog - Endoscopies & Knee Scooters- Ready for College! - July 20th, 2020 A selfie of Emma in a hospital gown right before her endoscopy. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651520567691-2WQW2U8PME1Z0JL0MBLL/20200727_191415772_iOS.JPG My Blog - Endoscopies & Knee Scooters- Ready for College! - July 27th, 2020 Emma in her pajamas on her knee scooter giving a thumbs up https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651520776445-5341X5EO0HCOAC4FQLKL/20200821_145004165_iOS.jpg My Blog - Endoscopies & Knee Scooters- Ready for College! - August 21st, 2020 Emma in her CAM Boot and Doc Martens in an airport on her way to college. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651520615787-00H2BD41QQRYZ9CH439S/20200822_213934490_iOS.JPG My Blog - Endoscopies & Knee Scooters- Ready for College! - August 22nd, 2020 Emma moved into her dorm room sitting on her bed with her CAM Boot. https://www.livinginthelimbo.com/blog/orthotics-injections-mris-oh-my monthly 0.5 2022-05-25 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651515630323-6RX572QH5DBHQPAP5FD4/20200709_231006261_iOS.JPG My Blog - Orthotics, Injections, MRIs, Oh My! - July 9th, 2020 Emma is walking in her cap and gown to graduate. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651515651205-KSEVOE55A89Q10Y0UQLV/20200711_032546883_iOS.JPG My Blog - Orthotics, Injections, MRIs, Oh My! - July 10th, 2020 Emma icing and elevating her foot after hitting it on a coffee table. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651515740399-9DITA36N3P108ZJ5BMQ3/20200715_163126752_iOS.JPG My Blog - Orthotics, Injections, MRIs, Oh My! - July 15th, 2020 Emma gives a thumbs up immediately after getting her corticosteroid injection done. https://www.livinginthelimbo.com/blog/17-pills-a-day-wont-keep-the-doctor-away monthly 0.5 2022-05-25 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651511971304-ENXNOI7VA9186OK1QLHF/20200620_035252164_iOS.JPG My Blog - 17 Pills A Day Won’t Keep the Doctor Away! - June 19th, 2020 Emma is smiling with her mom and brother by her side taking a selfie. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651511987232-EOOO2JM068M3UDPQMF05/20200615_050323143_iOS.JPG My Blog - 17 Pills A Day Won’t Keep the Doctor Away! - June 15th, 2020 A photo of Emma’s dog Simba laying in a pink blanket on her bed. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651511999588-2GN03JPPFZMQ0KDBTYI3/20200701_225208484_iOS.JPG My Blog - 17 Pills A Day Won’t Keep the Doctor Away! - July 1st, 2020 Emma is sitting in a chair in her kitchen holding Simba and watching her mom chop tomatoes. https://www.livinginthelimbo.com/blog/the-h-pylori-story monthly 0.5 2022-05-02 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651508867470-10AZNI0VIOBL7PEXB9WG/I8LTC+ACI.jpeg My Blog - The H. Pylori Story? - June 11th, 2020 Emma is seen standing hunched over in a parking lot in her pajamas and hospital socks giving a thumbs up to the camera. https://www.livinginthelimbo.com/blog/the-hell-weeks-amp-the-return-of-the-uti monthly 0.5 2022-05-02 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651464477776-P30E5YMMQRGBFHVC6DMY/IMG_2978.jpeg My Blog - The Hell Weeks & The Return of the UTI - April 10th, 2020 Emma is in bed sick with her dog Simba laying next to her. Simba is wearing striped socks. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651464490272-VXE10IOBPACCY6MIPYKH/20200502_224256229_iOS.JPG My Blog - The Hell Weeks & The Return of the UTI - May 2nd, 2020 Emma is on her balcony holding her dog Simba. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651464505907-F5JRT3JOS9R3C0JEA4XC/20200531_115322218_iOS.JPG My Blog - The Hell Weeks & The Return of the UTI - May 31st, 2020 Emma was awake all night in pain. We can see an image of her face laying in bed looking very tired. https://www.livinginthelimbo.com/blog/the-double-kidney-infection monthly 0.5 2022-07-08 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651456872387-OLMV73ZANS8ITKM6E5HX/IMG_2981.jpeg My Blog - The Double Kidney Infection? - April 9th, 2020 Emma is asleep lying on the couch with one arm holding her flank. Her brother and dog are there for support. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1651456889456-8BJEYH65GR3YVG4ZFUCB/IMG_3098.jpeg My Blog - The Double Kidney Infection? - April 14th, 2020 Emma’s view from her hospital bed. Friends can be seen playing on the TV. https://www.livinginthelimbo.com/blog/the-curse-of-the-golden-heels monthly 0.5 2022-07-08 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/2fa16c20-8a0e-44b3-a75d-6c956763be35/20200325_022749135_iOS.jpg My Blog - The Curse of the Golden Heels Image of Emma's CAM Boot on her left foot in a mirror. https://www.livinginthelimbo.com/blog/the-very-beginning monthly 0.5 2022-07-06 https://www.livinginthelimbo.com/tips-tricks daily 0.75 2026-03-08 https://www.livinginthelimbo.com/tips-tricks/fashion-with-a-central-line monthly 0.5 2026-03-08 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/ef71d056-a4cc-4198-923b-358e620853a8/IMG_8718.jpg My Advice - Fashion With A Central Line - Make it stand out An image of Emma, a white woman with a dark bob sitting in a blue chair wearing a blue blouse and white jeans and gold lace up heels in front of an abstractly painted wall. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/23a2ec12-fa9d-4c75-966f-7ac44f860d0b/Screenshot+2026-03-06+at+5.47.32+PM.png My Advice - Fashion With A Central Line - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/620de1c4-3a0b-47d8-a6f1-49dbfcbbf28b/Screenshot+2026-03-06+at+5.48.09+PM.png My Advice - Fashion With A Central Line - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772837524931-RRYQ2YTOXS47LTAFSIB4/20211027_150710840_iOS.JPG My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772837538236-JZ2EN0X7H4YR09KMKST5/20220826_170833942_iOS.jpeg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772837846051-EFYWX6BLVHV56A5ZT3BA/IMG_4093.png My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772837865343-KE6IC65AEOG58QAHGP4F/20220919_173504256_iOS.jpeg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/750f1ce5-4e49-4412-b801-ddd8a75e846e/IMG_4108.jpg My Advice - Fashion With A Central Line - Make it stand out An image of 20+ colorful tubie clips organized by season/theme. There's christmas, halloween, fall, spring, summer, everyday, and black. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772986766113-Z5I2DX6OJNIN98JTLYU2/20221109_184205193_iOS.jpg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772986773646-CKOPJ79CCKTHII2MMM3H/20220922_185323277_iOS.jpg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772986780125-1E5KG3AK2BHORVLU1V75/20220822_144943021_iOS.jpg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772986876844-PXSBATU27UTEWKCF0XI3/20230415_145427889_iOS.jpg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772986938148-NPEBGRP560KVMUACLKKH/20230128_031845000_iOS.jpeg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772987196160-XY70YEK5RO4I60KND9YZ/20230418_151308000_iOS.png My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772987201524-GJY6OFYEWSF4JRP1S7A5/20231030_193142150_iOS.jpg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772987230625-M7E7OM02HXMAGMI2NR16/20221031_155425548_iOS.jpg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772987210315-C4T7JRL9WPEDGTN18V3H/20220915_154102180_iOS.jpg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772987263905-CUMPIX2AUVGO3EC8F98S/20221006_164041730_iOS.jpg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772987280464-L1CI58ZH3YW00OIYWQIH/20231005_153048592_iOS.jpg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772987299308-YFNN43FFGTN20M0HNO4T/20230419_190937961_iOS.jpg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772987321594-T0JVLU00IBUG5X1D7GPB/20230928_152359243_iOS.jpg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772987348460-P6BCCIMMIAEMRCUMJSMX/20230831_170743065_iOS.jpg My Advice - Fashion With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1772987390644-4L2CH9LZFMTQHC1J4U5E/20221118_045707000_iOS.png My Advice - Fashion With A Central Line https://www.livinginthelimbo.com/tips-tricks/how-to-gravity-iv-phenergan-infusion monthly 0.5 2025-07-12 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/a3dafca9-cf84-4fbc-8766-306c3f42108d/IMG_2298.jpg My Advice - How-To: Gravity IV Phenergan Infusion - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.livinginthelimbo.com/tips-tricks/how-to-labs-at-home monthly 0.5 2025-07-12 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/fcc7cfc3-2e83-4afa-8851-14be671cff45/IMG_2288.jpg My Advice - How-To: Labs at Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.livinginthelimbo.com/tips-tricks/how-to-gravity-iv-tylenol-infusion monthly 0.5 2025-07-12 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/6435f610-b731-420c-848c-5942329d2da5/IMG_2287.jpg My Advice - How-To: Gravity IV Tylenol Infusion - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.livinginthelimbo.com/tips-tricks/restaurant-cards-downloadable monthly 0.5 2025-07-11 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/5207b50a-84c4-40f0-9d66-286426001571/Screenshot+2025-07-11+at+5.27.27+PM.png My Advice - Restaurant Cards - Downloadable - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/fc8adfe1-6c06-4a18-a45d-e6f44c7e20b0/LitL+%7C+Dual+language+Restaurant+Cards My Advice - Restaurant Cards - Downloadable - Make it stand out Restaurant Cards - DOUBLE SIDED | ENGLISH & SPANISH (click photo to open pdf in new tab) https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/40b9d442-ac8e-4e18-858d-b4617c3ad13d/LitL+%7C+Restaurant+Card.ENGLISH.png My Advice - Restaurant Cards - Downloadable - Make it stand out Restaurant Card - SINGLE SIDED | ENGLISH ONLY (click photo to open pdf in new tab) https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/80155b83-e9c8-47ca-9460-6ad3f412aaed/LitL+%7C+Tarjetas+de+restaurante.ESPANOL.png My Advice - Restaurant Cards - Downloadable - Make it stand out Tarjetas de Restaurante - SINGLE SIDED | SPANISH ONLY (click photo to open pdf in new tab) https://www.livinginthelimbo.com/tips-tricks/sash-mat-downloadable monthly 0.5 2025-07-11 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/b7a70872-e2f7-4fcd-85dd-8d4f9ec5c92a/LitL+%7C+SASH+Mat.png My Advice - SASH Mat - Downloadable - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/b7a70872-e2f7-4fcd-85dd-8d4f9ec5c92a/LitL+%7C+SASH+Mat.png My Advice - SASH Mat - Downloadable - Make it stand out SASH Mat (click photo to open the pdf in new tab) https://www.livinginthelimbo.com/tips-tricks/managing-flares monthly 0.5 2022-12-21 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/e26eee2d-6559-4b21-8f81-5a4f5a4c090a/IMG_7985.jpeg My Advice - Managing Flares - Make it stand out A dark image of Emma laying in bed during a flare holding her water bottle and covered with blankets. Her blinds are all closed which is making the lighting dark. https://www.livinginthelimbo.com/tips-tricks/how-to-handle-food-replacements monthly 0.5 2022-08-17 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/2fb3cd29-5be4-4191-88c6-c0e5f65805f4/IMG_8935.jpg My Advice - How To Handle Food Replacements - Make it stand out Emma in a lavender tank top and lavender gingham pants with white sandals sitting on her kitchen counter holding open a "gluten free" recipe book. Her kitchen cabinets are a pastel green color and her TPN backpack is on the counter beside her. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/a8b87758-8ec7-4a08-b956-0113cfea7e24/Screen+Shot+2022-08-13+at+5.24.24+PM.png My Advice - How To Handle Food Replacements - The crackers are a bit smaller in size than your typical Ritz cracker and are crunchier in texture but otherwise a pretty close replacement. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/976af06f-b021-4b92-b334-5988f75638a3/Screen+Shot+2022-08-13+at+5.29.34+PM.png My Advice - How To Handle Food Replacements - They are quite small and the box doesn’t come with many so I’d recommend getting multiple boxes to last you through a week (could also be because I would eat 3-4 just for breakfast alone ;-) ). https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/31ab17f1-d309-463c-83b4-3f86edda2eb1/Screen+Shot+2022-08-13+at+5.33.09+PM.png My Advice - How To Handle Food Replacements - They also have different types of bread that they sell like whole grain, hamburger buns, and hot dog buns. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/925a69ec-3762-435d-9e38-a2b07427d4d6/Screen+Shot+2022-08-13+at+5.39.12+PM.png My Advice - How To Handle Food Replacements - This was my go-to meal for about a year and gave me minimal problems. Tastes great and textures are unrecognizable from regular mac & cheese. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1569e347-51ee-43b5-81e6-5d393571b293/Screen+Shot+2022-08-13+at+6.23.18+PM.png My Advice - How To Handle Food Replacements - I recommend for a lot of baked goods to add in Xanthan gum because it acts like the elasticity that wheat naturally has in it and helps with the textures of foods you’re baking. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1abd4bad-6463-4477-aca3-29b351906d9c/Screen+Shot+2022-08-13+at+6.25.02+PM.png My Advice - How To Handle Food Replacements - I used to make these in bulk and then have them multiple times throughout the day. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1f3aa18b-b782-4256-b077-ec36964da2d8/Screen+Shot+2022-08-13+at+6.28.44+PM.png My Advice - How To Handle Food Replacements - These actually taste better than Eggo waffles because they have a slight hint of fruit in the aftertaste since it’s made with some different fruit extracts. Its texture can be a bit crumbly but the flavor and closeness to regular waffles makes up for its crumbliness. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/736ad89b-1184-432e-8f51-0ef3e6b4a516/Screen+Shot+2022-08-13+at+6.33.53+PM.png My Advice - How To Handle Food Replacements - EVEN though I did react to them, I had to include them on the list for others because the taste is a dead ringer for a regular Oreo. They also now sell double stuffed gluten free Oreos. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1660434675527-IOLUPUJ9Q9CAQI23IS2C/Screen+Shot+2022-08-13+at+7.50.49+PM.png My Advice - How To Handle Food Replacements https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1660433942647-Q1K3X12RLEGSLCCXYTMY/20210117_211051303_iOS.JPG My Advice - How To Handle Food Replacements https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/39f50bb4-7133-459b-8c0e-96dcac8c0a6a/Screen+Shot+2022-08-13+at+6.49.29+PM.png My Advice - How To Handle Food Replacements - I am more of a soup person rather than a drink or smoothie person, so I’d much rather eat a protein soup than drink a protein drink. I found this delicious mushroom bone broth from Kettle & Fire that in small amounts my GERD seemed to be okay with. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/707daf90-2e3d-44bc-869f-b510e83def96/Screen+Shot+2022-08-13+at+6.54.27+PM.png My Advice - How To Handle Food Replacements - I liked the brand because the sizing of the packs was small so if I ate one in a day, I felt like I actually made progress and I liked that I could reseal the cap. Additionally with the opening being like a straw, it helped with my swallowing issues to not accidentally eat too much and choke. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1660434214851-F678XDDRHD4ESUX40MGN/Screen+Shot+2022-08-13+at+7.03.49+PM.png My Advice - How To Handle Food Replacements https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1660434216196-686UJ1TD146JL1WZ433V/Screen+Shot+2022-08-13+at+7.04.03+PM.png My Advice - How To Handle Food Replacements https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1660434217495-P46K5IHCJVGOSPRI17LO/Screen+Shot+2022-08-13+at+7.04.12+PM.png My Advice - How To Handle Food Replacements https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/d963e947-f1bc-475d-856e-79fcfef4e779/Screen+Shot+2022-08-13+at+7.06.37+PM.png My Advice - How To Handle Food Replacements - I initially was able to eat the noodles but once my swallowing issues started, I just drank the broth. I recommend this brand and flavor since it tastes really good, and the soup is gluten free in general. The ramen can be cooked on the stove top or microwavable which is great for flares. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/61a2539b-0fab-4a6d-9bdf-c6a9719063e2/GUEST_f7e69d98-d10c-4afd-8e7f-543aa456dc7e.jpeg My Advice - How To Handle Food Replacements - Over time I no longer was able to tolerate this ice cream, but it used to work! https://www.livinginthelimbo.com/tips-tricks/making-your-home-chronic-illness-friendly monthly 0.5 2022-08-16 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/02d2d3f3-adfa-4d53-9a1e-b116cee898d0/IMG_9598+copy.jpg My Advice - Making Your Home “Chronic Illness Friendly” - Make it stand out Image of Emma sitting on the side of her bed with a thin nightstand holding a tissue box and pill organizer. Beside her nightstand is an IV pole holding her TPN backpack. Underneath the nightstand is a small trashcan and SHARPS container. https://www.livinginthelimbo.com/tips-tricks/apartment-hunting-for-the-chronically-ill monthly 0.5 2022-08-06 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/d6e8c31e-b37a-4045-856a-2f848df220ea/IMG_9027+copy+2.jpg My Advice - Apartment Hunting For the Chronically Ill - Make it stand out Image of Emma wearing a pastel pink t-shirt with white jeans and black kitten heels. She has on a black and white houndstooth blazer and is holding her TPN backpack in her hand. She has short black hair and is holding up keys in her other hand. https://www.livinginthelimbo.com/tips-tricks/going-to-school-with-tpn monthly 0.5 2022-08-17 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/f19bccef-4ec4-4539-9942-026fe90fb231/IMG_8835.jpg My Advice - Going To School With TPN - Make it stand out Image of Emma in a lavender tank top and lavender and white gingham pants with white platform sandals wearing her TPN backpack. Her Hickman is visible on her right chest. She has short black hair and has on a white floral tube clip. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659799474623-PI89GTOB79BH76OS5450/IMG_9339.jpg My Advice - Going To School With TPN An image from behind of Emma’s TPN backpack under the front left leg of the chair. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659799476775-RY17Q6L0PHUEX0MF3455/IMG_9342.jpg My Advice - Going To School With TPN An image from the front of Emma sitting in a chair with her TPN backpack tucked underneath the chair leaning against the front left leg with the TPN tube side facing forward. https://www.livinginthelimbo.com/tips-tricks/managing-illness-whenever-you-leave-the-house monthly 0.5 2022-08-16 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/f24f8901-8920-4ca4-b437-5158b54e6529/IMG_7301.jpg My Advice - Managing Illness Whenever You Leave The House - Make it stand out Emma's TPN backpack's TPN section open showing the TPN, pump, and medication bag on one side and flushes and dressing supplies on the other side. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659799209790-WWXJNTJ24U4UBCNRJITM/IMG_9354.jpg My Advice - Managing Illness Whenever You Leave The House A picture of the items Emma mentioned above spread out on a table. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659799164802-PFSKFL1JPC8MQ8GM38UP/IMG_9356.jpg My Advice - Managing Illness Whenever You Leave The House An image of the supplies Emma mentioned above in picture form. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659798883519-TITMFUAYEN2P2Z59OMPI/IMG_9357.jpg My Advice - Managing Illness Whenever You Leave The House A custom-made iron on label from Etsy that states, “Parenteral Feeding Equipment Do Not Separate”. The background is red and the text is black. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659798885651-R04Z0HYZ0RE5659DJTDR/IMG_9358.jpg My Advice - Managing Illness Whenever You Leave The House A thin rectangular fabric that is red and in white letters states, “Medical bag”. It has a black clip to attach it to a bag. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659818853679-VZ6VQ9H79O6M66QJXQRO/IMG_9375.jpg My Advice - Managing Illness Whenever You Leave The House A recent favorite patterned tube clip from Threads of Kindness. It shows a pink clip with watermelons on it with a white button snap and white clip at the top. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659798746885-5JS21HHKFHAMGXGHQGC5/IMG_9366.jpg My Advice - Managing Illness Whenever You Leave The House A photo of Emma using a white and multicolored floral clip with her TPN tubing coiled up. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659798504177-KYBK1Z8BBKU9E691FYM3/IMG_9350.jpg My Advice - Managing Illness Whenever You Leave The House A pink small cloth zipped bag with a red heart and a white plus embroidered onto the top. A white button pin with a red medical symbol is pinned on top which states “medication inside”. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659798505151-IPIRJ3WNZCWXOFO1AFC7/IMG_9352.jpg My Advice - Managing Illness Whenever You Leave The House Unzipped version of the pink bag showing an elastic pouch on the left side, a middle zippered section that can flip to either side, and a deeper compartment that Emma has holding 3 prescription bottles and a glucose tablet travel tube. Her color coding chart is also visible. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659798416929-LKYG4M1OC9GP2HN0221L/IMG_9349.jpg My Advice - Managing Illness Whenever You Leave The House Simple Modern blue to black gradient metal 12 ounce water bottle with a straw. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659797922880-X9M92A6MFVRKMKZ254TF/IMG_9361.jpg My Advice - Managing Illness Whenever You Leave The House - "Fear" Pin A pastel rainbow lettered pin that says, “Feel the fear and do it anyway” in all caps. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659797927018-U0PN1035X9QE60YTTG9B/IMG_9360.jpg My Advice - Managing Illness Whenever You Leave The House - "Smilely" Keychain A rectangular keychain that has a white background with small grey polka dots spread out with 6 different colored smiley faces with the words “You’re doing better than you think” below each smiley. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659797932984-4JG4T3CJ54NML1HPPA7P/IMG_9362.jpg My Advice - Managing Illness Whenever You Leave The House - "Spoonie" Keychain A silver keychain that has a small metal spoon and a metal circle with the following phrase engraved; “Fate whispers to the warrior ‘you cannot withstand the storm’ and the warrior whispers back I am the storm”. https://www.livinginthelimbo.com/tips-tricks/how-to-shower-with-a-central-line monthly 0.5 2025-07-08 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/b391995a-73ac-4958-8ce5-9ff0d87aef9f/IMG_8971.jpg My Advice - How To Shower With A Central Line - Make it stand out A selfie of Emma in a bathrobe showing her central line with 2 lumens hanging out. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/98f1b4ec-3d68-4daf-a627-3e4171212d49/2.png My Advice - How To Shower With A Central Line - To open the cap, use the cap itself to push through the packaging and slide it out slightly so you are able to screw it in easier later. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/26f98c30-e0ac-401f-a029-f4bcc4b8886f/3.png My Advice - How To Shower With A Central Line - Take one shower seal and remove all of the seals off of it. Set the shower seal down nearby with the sticky side facing up. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1f83d8ac-c472-4d89-81e9-cd0e7ded01dd/4.png My Advice - How To Shower With A Central Line - Next, go ahead and pause the pump (I personally have to then turn my pump off or else it will alarm). Clamp both the TPN line and your lumen. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/3e79e641-fa3e-480e-be64-e2b1b1dc0285/5.png My Advice - How To Shower With A Central Line - You will then untwist/unscrew the TPN line from your TPN lumen however pay special attention to not touch the ends!! This could introduce bacteria into the line! https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/d088a5b9-2a60-436e-a540-96b716546d1a/6a.jpg My Advice - How To Shower With A Central Line - Transfer the lines into one hand while still making sure not to touch the ends!! https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/9795cea1-5c6a-444e-b6d2-7eda63bc0640/6b.png My Advice - How To Shower With A Central Line - Next, grab the wrapper portion of the blue cap and place it onto the end of the TPN line. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/8afea971-b992-4033-8da8-895fab3d03a2/6c.png My Advice - How To Shower With A Central Line - After the cap is on and you’ve tightened it slightly, you can remove the wrapper and continue tightening the cap. Once the blue cap is securely on the TPN line, go ahead and set that aside. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/0ebc87b6-569f-4d38-85f4-697291c8c54c/7a.png My Advice - How To Shower With A Central Line - Begin by opening the green cap while being sure to not touch the opening of the cap. In my image, you can see how I hold the back end of the cap to keep my fingers away from the part that will touch the lumen end. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/ed2bd670-7204-433d-8266-36d4c319082b/7b.png My Advice - How To Shower With A Central Line - After you have opened the cap, screw it onto the lumen. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/7e2146c5-9747-4be7-ab90-cc9d7780498f/7c.png My Advice - How To Shower With A Central Line - I then grab a small piece of toilet paper and wipe around the base of the green cap to remove excess alcohol that seeped out from the cap. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659404908535-44KVQ2Y2OPHOJ2BW2VU3/8a.png My Advice - How To Shower With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/1659404908460-S089U515CJZUWTUB9BKE/8b.png My Advice - How To Shower With A Central Line https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/532cf155-16b2-4a3c-9543-86cdc1d43684/9.png My Advice - How To Shower With A Central Line - You will next need to coil up your line, so it is small enough to fit under your piece of toilet paper. My line is really long so I have to coil it around alongside having it in a griplock. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/26ce7df5-5f08-4775-889a-37fd19fcb1fb/10.png My Advice - How To Shower With A Central Line - You are going to place the toilet paper on top of your coil and hold the toilet paper in place with one hand. Using your other hand, push in any straggling central line tubing and parts as best as you can so they are under the toilet paper. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/6564339f-1c01-4e6b-a9a5-4a5e26de2cdf/11a.png My Advice - How To Shower With A Central Line - Grab the shower seal that has the edge seals removed (the one we prepped at the beginning) and begin by attaching it to the top of your shoulder. As you do this, be sure your other hand is still holding the toilet paper/coil area in place. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/29172a05-d249-424f-95a5-71286a140ef8/11b.png My Advice - How To Shower With A Central Line - After the top of the shower edge is sealed to your shoulder, go ahead and move your “sealing” hand over the center of the square to hold in place the toilet paper while you slip your “trapped” hand out. *You will now need to keep the new hand holding the toilet paper in place. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/c9c46c55-e3da-4d7d-9ea9-3326116581fd/11c.png My Advice - How To Shower With A Central Line - Use the free hand to begin sealing the left edge closest to the center of your chest. I usually start at the neck and seal down and outwards. Try to have it as smooth as you can so there’s no bubbling or holes at the edges. This will prevent water from getting in. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/f292c082-f641-4d6a-9786-1cf9db70ff51/11d.png My Advice - How To Shower With A Central Line - After the top and left are secured, I then slide my hand along the bottom edge from left to right to seal it. *My torso is quite small, so this usually makes some of the seal edge end up being under my armpit however, it helps keep it secure. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/68e2e5fb-4d02-4d76-8dff-cfa46da1aa09/12a.png My Advice - How To Shower With A Central Line - I then have the sticky side facing down and bend up 1/3rd of the seal to be facing me (which reveals a sticky side). https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/7746d291-5d80-483c-a8ff-8e78118707ec/12b.png My Advice - How To Shower With A Central Line - I slightly curve it as if it were a necklace and apply it to my neck overlapping slightly with the previous seal. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/4aba3aac-5064-41fe-ae43-92b2b9601ecc/12c.png My Advice - How To Shower With A Central Line - Next, I begin by sealing the left edge. The right edge does not matter as much because it’ll be on top of the first seal but the left edge here is really important. *Try to get it as smooth as you can with no holes. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/eb2dd2b0-e308-4263-9b59-f5b08c0706e1/12d.png My Advice - How To Shower With A Central Line - After securing the left edge, go ahead and seal the bottom and right edge since they are not as important and don’t have to be perfectly smooth. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/af4dd18e-cfad-4f88-b7a9-98561a4e1ebd/Screen+Shot+2022-08-01+at+7.48.33+PM.png My Advice - How To Shower With A Central Line - You’re going to grab the seal and with the sticky side facing the floor, place it on top of your shoulder as if it were a shoulder pad or a towel you had hanging over your shoulder. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/6960afcd-0f96-4dac-91e7-5804a16039de/done.png My Advice - How To Shower With A Central Line - Your seal may look something like this (since central line placement and body types will differ) and you can go into your shower! https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/b50774f5-be95-4360-aea4-63a6be2e9015/1r.png My Advice - How To Shower With A Central Line - I begin by removing the furthest edge. To help with any skin irritation or pain (since this does feel like ripping off a band-aid) I try to hold the skin down at any sensitive spots as I peel. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/2c2cfadd-b13a-4d9e-8edb-748029f57532/2r.png My Advice - How To Shower With A Central Line - Remove the left edge of the 1st seal we placed down when we were prepping for the shower. This seal can is the furthest underneath. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/62915e98-5962-4066-818c-e6863990820b/3r.png My Advice - How To Shower With A Central Line - Peel off the bottom edge but make sure the toilet paper and lumens don’t fall out yet (you may need to use a hand to hold them up). https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/ea9c59c9-73fd-43ce-9b25-184520bacf11/4r.png My Advice - How To Shower With A Central Line - Go ahead and move back to the top area and peel off the rest of the neck area under just the shoulder part remains. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/2d67ab9d-714c-4c1e-9d0f-9db0c781f72b/5r.png My Advice - How To Shower With A Central Line - *In order to not make this hurt- hold down the skin as you peel!! Go ahead and peel the armpit/right edge by starting from the bottom and working your way up towards the shoulder. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/e14854c9-ac23-48d9-8a23-1f4a9c0f0a5a/6r.png My Advice - How To Shower With A Central Line - While using one hand to hold in place the toilet paper and shower seal, peel off the last remaining shoulder shower seal. If any dressing is stuck to the seal, hold down the dressing with your hand as you peel of the shower seal. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/5224a8eb-74c9-4976-9d7e-936640a51f1e/7r.png My Advice - How To Shower With A Central Line - Check that your toilet paper is dry to confirm that no water got in during the shower. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/3c08fa17-0f06-4a32-9f0c-5beaffa4e70c/8r.png My Advice - How To Shower With A Central Line - Then reconnect the TPN line to the TPN lumen making sure that you do not touch the ends of the lines with your fingers (or anything else for that matter!). Once they’re securely connected, you can resume your feeds. https://www.livinginthelimbo.com/tips-tricks/traveling-with-tpn monthly 0.5 2022-08-16 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/99639929-3c47-4880-8bd0-363e04b1f886/IMG_7295.jpg My Advice - Traveling With TPN - Make it stand out Image of Emma's TPN backpack with colorful pins on a white table with an abstract black and white line art wall in the background. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/06740299-9396-4ae8-be44-700e5e41e030/edited.jpg My Advice - Traveling With TPN - **I’ve included the supply document I made for my travels below (with medical identification redacted): Image Close-Up https://www.livinginthelimbo.com/research daily 0.75 2022-08-18 https://www.livinginthelimbo.com/research/how-do-central-venous-catheter-related-infections-occur-and-what-are-the-steps-to-handle-them monthly 0.5 2022-08-18 https://www.livinginthelimbo.com/research/how-does-hunger-work-with-those-whos-nutritional-needs-are-met-but-cant-eat-orally monthly 0.5 2022-08-18 https://www.livinginthelimbo.com/research/does-age-play-a-factor-in-parenteral-nutrition-induced-liver-disease-andor-cholestasis-even-among-reducing-lipid-emulsions monthly 0.5 2022-08-18 https://www.livinginthelimbo.com/research/what-quality-of-life-research-is-available-for-those-on-long-term-tpn monthly 0.5 2022-08-18 https://www.livinginthelimbo.com/research/test monthly 0.5 2022-08-18 https://www.livinginthelimbo.com/thoughts daily 0.75 2025-08-02 https://www.livinginthelimbo.com/thoughts/4-year-tpn-anniversary monthly 0.5 2025-08-19 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/d0820053-9d2e-4cdd-af95-446a0c9660a3/IMG_2234.jpg My Thoughts - 4 Year TPNiversary - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.livinginthelimbo.com/thoughts/3-year-tpniversary monthly 0.5 2024-08-19 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/857a7ded-ea18-4bff-8ec4-cc73893eabc0/cover+image.jpg My Thoughts - 3 Year TPNiversary! - Make it stand out A photo of Emma smiling while wearing a white tank top and purple gingham pants holding her medical backpack and white TPN tubing. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/bb049c91-8e2e-4119-8e92-f92e73fe3567/IMG_8970.jpg My Thoughts - 3 Year TPNiversary! - An image of a part of Emma’s monthly lab draw setup. https://www.livinginthelimbo.com/thoughts/2-year-tpn monthly 0.5 2023-08-19 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/8d7a3e25-94fc-4107-bd6b-7eca043eb885/IMG_5804.jpg My Thoughts - 2 Year TPNiversary! - Make it stand out A photo of woman with short dark brown hair in a white lace romper holding her TPN backpack in one hand and a gold party horn in the other. On the wall behind her is a hung up letter sign that states: “Happy Two Years!” with two gold tassels hanging on either side of the lettering. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/a5007a02-9e67-43c0-9e81-e87297883ec6/Restaurant+Card My Thoughts - 2 Year TPNiversary! - Make it stand out An image of a ‘restaurant card’ with a diagram photo showing a central line connected to TPN. The card states: “Please Notice: Due to a serious medical condition, I am unable to eat and/or drink. All of my nutrition is infused through an intravenous catheter. Please allow me to enjoy my time with my company. Thank you for your consideration.” https://www.livinginthelimbo.com/thoughts/my-thoughts-on-the-psychology-of-long-term-hunger monthly 0.5 2022-08-18 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/52a7f7f2-83ce-43ef-86bf-eaa349f3afaa/IMG_9080.jpg My Thoughts - My Thoughts On the Mechanics Behind Long Term Psychological Hunger - Make it stand out Emma is wearing a black and white blouse and a green blazer with white jeans and black heels. She is sitting at her dining table with her legs crossed and smiling. Her TPN bag is seen under the table beside her and she has on a green tubie clip. https://www.livinginthelimbo.com/thoughts/views-on-death-as-a-20-year-old-1 monthly 0.5 2025-07-30 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/5d82a086-c19e-4e43-961f-0d7149020778/image-asset.jpeg My Thoughts - My Views On Death As a 20-Year-Old - Make it stand out Emma wearing a blue and white patterned blouse with white jeans and gold lace up heels. She is sitting cross-legged on her couch with her head resting on her hand. She has a soft smile with eye contact to the camera. https://www.livinginthelimbo.com/thoughts/learning-to-rest-as-a-workaholic monthly 0.5 2022-08-16 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/325bb3e4-f3ac-4be2-a912-e426908007b1/IMG_8975.jpg My Thoughts - Learning To Rest - As A Workaholic - Make it stand out An image of Emma on her living room couch wearing a nice outfit with her laying back and her arms outstretched and her head looking up exhausted. https://www.livinginthelimbo.com/thoughts/tag/views+on+death monthly 0.5 https://www.livinginthelimbo.com/living-in-the-limbo daily 0.75 2025-08-07 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/5224c19e-9b00-4357-a37b-9bf63661dd28/IMG_8914.jpg Living in the Limbo - The website was titled ‘Living in the Limbo’ because it was a phrase that I often referred to when describing her journey through chronic illness or when answering “how are you doing?” Living in the Limbo describes the circumstance when you are undiagnosed or in between treatments and just living in the in-between. There’s a lot of unknowns that come within a limbo but there is a way to live inside of it and thrive! https://www.livinginthelimbo.com/about daily 0.75 2025-08-07 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/7e3c4813-85f0-46a6-afed-9eeabbf33fed/IMG_9627.jpg About Me https://www.livinginthelimbo.com/contact daily 0.75 2022-07-06 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/ed6e122e-2e31-4993-8922-4f90d2ca6851/IMG_4213.jpg Contact - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.livinginthelimbo.com/home daily 1.0 2025-08-19 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/ef71d056-a4cc-4198-923b-358e620853a8/IMG_8718.jpg Home - Living in the Limbo are personal health stories written by Emma Alvarez-Roth, a chronically ill artist and stage manager. https://www.livinginthelimbo.com/tpn daily 0.75 2025-08-07 https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/ba05a56d-89c8-4e28-81e9-ac54b387df48/IMG_7300.jpg TPN Emma's TPN Backpack from MightyWell covered in medical pins and an iron-on patch stating "Parenteral Feeding Equipment Do Not Separate". https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/ed47944c-6b90-41f2-92db-7ed1caf513bf/IMG_7301.jpg TPN Emma's TPN portion of her backpack unzipped showing the TPN bag, her medical pump, and medications and supplies. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/db32b722-5461-47f2-8f3f-afa839e4a797/IMG_4006.jpg TPN Emma is standing holding her MightyWell Infusion Backpack with her colorful bag pins and a medical bag tag showing. https://images.squarespace-cdn.com/content/v1/626d7b101839473e9026ef78/8080b13f-a133-4f74-85d6-fa113220beb8/IMG_7313.jpg TPN - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.livinginthelimbo.com/espaol-1 daily 0.75 2025-07-12 https://www.livinginthelimbo.com/thank-you-email-signups daily 0.75 2022-08-18