Malabsorption

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

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

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....,

What are the symptoms and how should I approach to my doctor #Malabsorption syndrome #Digestiveproblems