Caroline Neumann Caroline's Champions

First post: Feb 25, 2016 Latest post: Mar 8, 2016
Hello, all visitors to my page;

My name is Caroline Neumann, I'm 21, live in South Florida and I have quite a few medical conditions that has had me create a Caring Bridge account so my friends and family can know about my day-to-day progress (or week-to-week, depending on how well I'm feeling or how important/unchanged things would be to create a journal entry) as well as impending doctors appointments, hospital visits and so on and so forth.

I have quite a few medical conditions plaguing me every single day of my life, starting from the age of 13 to now at age 21 - about 9, making it almost 10 years of suffering from these conditions. I'll list them so it's easy to know what problems exactly I have:

*Mitochondrial Disease (unspecified at the moment)
*Chronic Intestinal Pseudo-Obstruction (a.k.a, Total Gut Dysmotility)
*GERD (Gastroesophageal Reflux Disease)
*Liver Calcifications
*Gastritis & Esophagitis
*Gastric Ulcers
*Respiratory Muscle Weakness
*COPD (non-smoking)/Asthma-like Lung Dysfunction
*Interstitial Cystitis
*Immune Thrombocytopenic Purpura (ITP)
*Polycystic Ovarian Syndrome
*Neuropathy and Myopathy
*Myoclonic Epilepsy
*Ptosis (drooping eyelid)
*Hearing and Vision Loss
*Heat and Cold Intolerance
*Postural Orthostatic Tachycardia Syndrome (POTS)
*Sleep Apnea
*Generalized Weakness and Fatigue (all over the body)
* Herniated Discs In Lower Spine

I get oxygen through a nasal cannula, have a gastric feeding tube (G-tube) implanted in my stomach wall to give very limited oral medications (usually just one but sometimes have to do more than one) as most of my medication goes intravenously (IV) through a permanent IV surgically implanted in my chest, along with the majority of my nutrition (TPN - total parenteral nutrition); it's called a central venous catheter (or central line); the one I have is specifically a double-lumen Groshong central venous catheter. I used to have a G-J feeding tube (gastro-jejunal feeding tube - the jejunal tube meaning a tube extending to the jejunum, part of my small intestine), but after vomiting up the actual tube one day and almost choking to death on it, plus doctors refusing to do an invasive regular jejunal tube a.k.a J-tube surgery due to its many risks and complications related to my condition, we can only deal with the much less invasive G-tube and force to push even the smallest amounts of liquid through it, even though I throw up my medications quite often and it sits in my stomach for hours on end, it's the only thing we can do besides having my intravenous therapy.

Well, I think I've covered most if not all the conditions that has plagued my body but I persevere and stay with it as much as I can every day of my life. Due to the severe ailments my conditions have given me, I am on the oxygen, and attempt to use an old electric wheelchair of mine (attempt because it has a temperamental battery that sometimes works and sometimes doesn't work) for distance while I wait to be measured and my new wheelchair be sent so I can much more easily get around my house and anywhere I wish to enjoy spending my life in...such as the mall, maybe a park, church, or family event/birthday/other important family get-together...anywhere my heart desires. Until then, I do not go anywhere as I am practically bed-bound from the severe weakness and fatigue and other ailments I have like nausea/vomiting, severe dizziness, etc. I can still attempt to walk a few feet around my pretty small apartment but have to lie back or sit back down soon after to avoid severe leg and back pain, weakness, etc.

I hope you guys found my "little" explanation pretty explanatory and informative. :)

Besides all the medical stuff I just explained up yonder, I do try to keep a life separated from my incurable diseases. I happen to be happily married to my husband, Andrew, now for 2 and a half years (will be 3 years on October 5th, 2016!) and enjoy doing little things to keep me a little busy and distracted which include watching movies, using the computer to watch more movies, watch YouTube, play Sims 3 and Roller Coaster Tycoon 3 on my computer, and love video games as well as coloring, drawing, cross-stitching, and playing with my wonderful pets: my two rambunctious and playful ferrets, Sonny and Izzy, and my beautiful, soft black cat Delilah who always smells good for some reason. :) I also have a Betta fish named Rocket that we love just as much as our other animal babies. Anyhoo, I think that's it for now. :) Once again, I really do hope you found my explanation pretty explanatory and informative. :)

Lots of love to you all,
Caroline N.

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