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Nervous 😟

Just venting my anxiety. I’ve been in the hospital for almost a week. I was forced to come in to the ER when I woke with a 102 fever and palpitations much more severe than my usual POTS flutters. I was diagnosed with #Sepsis and #SIRS - scary. It took a while for the cultures to come back, but they finally narrowed the infection down to my #Port . Tomorrow I have to go down and have the port removed and have a #PiccLine placed so I can continue getting my #TPN . I’m not usually a nervous person, but I am so anxious about the removal. Could be some #PTSD related to IR and my j-tube days or just fear of the unknown (pain, sedation, etc.). Local anesthesia is not always effective for me so that’s one thing on my mind, plus I don’t like not having all the details ahead of time. 😟
I’m sure I’ll be fine once it’s said and done but this on top of not feeling well has me 🤢
#Disability #Hospital #AutonomicDysfunction #Gastroparesis #TotalParenteralNutrition #Malabsorption #FanconiSyndrome #MetabolicCondition #MultipleSclerosis #Hypoglycemia #AutoimmuneImmunodeficiency #SmallFiberNeuropathy #OrthostaticHypotension #Anxiety #interventionalradiology #AutonomicNeuropathy #PowerPort #Portacath

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Wishing all a happy New Year

I love Christmas. Love it. The lights, the music, the spirit! I wish Christmas was every month. This year however, I unfortunately did not spend Christmas the way I liked. I spent Xmas in the PICU(Pediatric Intensive Care Unit) due to my heart & kidneys(primarily). Because I spend most of the year in the hospital, I miss many holidays and even my birthday (on multiple occasions). I try not to let my situation get me down though. Yes, my entire body may be failing on me because of years of severe AN. I may have to battle this demon in my head day in and out. With each feed. Every ml. But, I will not give up nor let it define me.

Just thought I would post a picture of my pole for anyone that needs a smile. It sure made me smile. If I need to be fed by a machine, atleast let it look nice, right?!

Happy 2021

#AnorexiaNervosa #Gastroparesis #gastricparalysis #Malabsorption #AtonicColon


Neutra-Phos or PHOS-NaK

Looking for anyone who has to take neutra-phos or PHOS-NaK supplements and has tricks to getting it down. It’s disgusting. It’s “fruit” flavored so I’ve tried mixing it in with everything I can think of from juices to yogurt and applesauce, even protein drinks. The flavor is so overpowering I can’t get it down without gagging. I’m supposed to be taking it 4 times per day. I’ve already tried pills (I didn’t absorb them) and I’m also on TPN with an extremely high amount of phosphorus (my body just wastes it) so it’s pretty much my only option. Any advice is welcome! SN: I’m allergic to citrus/pineapple, so OJ is out. #MultipleSclerosis #AutonomicDysfunction #Malabsorption #TPN #Portacath #AutonomicNeuropathy #AutoimmuneDisease #Gastroparesis #SmallFiberNeuropathy #PosturalOrthostaticTachycardiaSyndrome #FanconiSyndrome #OrthostaticHypotension #Hypoglycemia #hypophosphatemia


I saw my PCP today to follow up on the hyper mobility, joint and muscle pain, and weakness. I also brought up that I subluxed my back on Saturday and he didn’t say much about either thing.

Told me my echocardiogram was normal, which is a plus. Told me he will not start me on any more meds as I’m already on 14 but that includes vitamins too. Told me a brace is okay but good luck finding something for joints other than ankle and wrist that are readily available. He did put in a referral to the EDS specialist at the University of Iowa but who knows how long that will take to get set up.

I did mention how my PT didn’t seem to do much. Yeah the pain is diminished, but it was replaced with numbness. I also mentioned the comments PT has made about hyper mobility being normal which I agree with to an extent, but the amount I have isn’t normal. Again he didn’t say much about it.

I guess I’m at a loss for what to do. I know there’s nothing they can do for hyper mobility, but can’t they still do the MRI that I pushed through 6 weeks of PT for? Can’t that help me find a PT that works with hyper mobility and knows how to treat it?

Yes, I know I’m fat. Yes, I have mental health problems. If my weakness, pain, and hyper mobility were related to those things it would’ve been a problem 20 years ago, not just an annoyance and me being “clumsy” with bad posture. Also it would’ve improved when I lost 20lbs a couple months ago, but it didn’t it actually got WORSE!

Sorry about the rant/vent I just don’t know what to do. I’m missing work because of subluxations which I can’t afford. I have a support team, but they’re all paid to support me (therapist, dr, and home aides). I feel lost and alone and my mental health isn’t doing the best.

#EhlersDanlosSyndrome (?) #Hypermobility #Depression #Anxiety #quietborderline #BorderlinePersonalityDisorder #GastroesophagealRefluxDisease #HiatalHernia #dismotility #Gastroparesis #Endometriosis (?) #Anemia #Malabsorption #BingeEatingDisorder #Tachycardia #Hypertension #ChronicPain #weakness


Struggling tonight

Having one of “those” nights... My sister, niece and I are taking a little mini vacation tomorrow - Sunday (No worries, we aren’t going anywhere around crowds or to any “hotbed” states” but we still have our masks & loads of sanitizer packed) so I have had an abnormally extra busy past few days trying to prepare. My body is so sore and hates me right now. I was hoping for a good night’s rest, but due to being so uncomfortable I took a dose of pain meds which makes me insanely itchy despite pre-medicating with Benadryl, Zyrtec, Pepcid, Tylenol, & Phenergan. I was able to fall asleep for about 3 hours but woke myself up scratching, now I can’t sleep. I’m also anxious about the trip for several reasons but mainly right now because we typically fly when we travel because it’s faster and easier on me all around. However, this trip we are driving and it’s about a 5 hour trip without stopping. I am so scared it is going to put my body in turmoil to be in the van that long. We are planning to make frequent stops, I have extra pillows, blankets, hot/cold packs, compression socks, literally everything I can think of to keep comfortable but I can’t help but be nervous. It’s been years since I have traveled more than 1 to 2 hours anywhere. I just want to be able to enjoy myself once we get there.
#AutonomicNeuropathy #AutonomicDysfunction #Gastroparesis #MultipleSclerosis #TPN #Portacath #PowerPort #ivfluids #SmallFiberNeuropathy #AutoimmuneAutonomicNeuropathy #OrthostaticHypotension #PosturalOrthostaticTachycardiaSyndrome #Malabsorption


Grieving #ChronicIllness #TotalAbdominalColectomy #Malabsorption #Anxiety #Depression #FeelingAlone

Ive been shutting myself off. Ive been very ill for 4 years. No one understands because I don’t look sick, at least not to them. I’ve had some malabsorption issue and outside of lab work, fecal studies not one doctor has tested to find the root cause. Just eat more they say. Honestly I can eat all I want and it’s not going to help. Your blood work looks good, I hear, at 88 pounds 5’4. Recently I had to rehome my fur babies. It devastated me. It was a hard decision as I’m the only person they’ve ever known. I truly had to put all my emotions aside and think of them, as well as myself. Being large I couldn’t give them the life they needed and just caring for them became so much work, energy I didn’t have to give. I’ve now lost my daughter because she doesn’t understand. I’ve lost most of my friends as they don’t understand. Family members I always thought would be there I don’t even hear from. I’m lost, I’m sad, I’m angry.... I didn’t ask for this and yet I’ve lost so much. Not exactly how I envisioned my life to be. Grandchildren I never see, daughters I never see, sisters I never hear from and a husband who took early retirement who will not find and keep a job because he has money coming in. Where this becomes relevant is we’ve always had independent lives and I value my space. I know most wont understand any of this. I’m feeling so lost without my babies even though I know I did the right thing for them, I’ve lost a daughter over rehoming dogs due to my health, Ive lost so much time being ill, Ive lost friends, family and feeling terribly alone. I just wish I could find one doctor, just one who was proactive enough to do the right testing, to care enough to think “outside” the medical journal box!
I’m breaking inside and no one knows because no one cares enough to know. Who wants to hear someone’s brokenness? Yes I know that to well....,