Category: appetite

New Potential Diagnoses, New Medications, and More Tests

Posted on by Grayson

The last few weeks have been incredibly hectic. I will say, though, that’s hectic in a good way. After putting up with issues for a while, I’m finally getting them addressed.

photo inside a GI exam room with tan exam table and white pillow against a blue and tan wall

I feel like I’ve already perfected the art of spending time in exam rooms.

Neuro

My migraines have been getting worse again. Unfortunately, our insurance doesn’t want to cover much of my Maxalt. They only want to cover three fills in sixty days. That’s 27-36 pills. When I have to take two to kill a migraine, that’s not enough. It means that, instead of being able to take these pills and move on with my day, I’m still having to try to treat my migraines with other things.

It just doesn’t work.

My neurologist has upped my nortriptyline to three pills at bedtime instead of two. I’m really hoping that it helps. For now, it’s helping me sleep through the night more. I’ll take that!

MCAS

I finally got a response from my allergist/immunologist office. The pee tests I did for MCAS were mostly within normal limits, though one showed higher mast cell activity than the others. Since I’m still having what we think are MCAS symptoms, though, they prescribed me montelukast or Singulair. What it does is block leukotriene D4 from hitting leukotriene receptors. This is especially helpful in the lungs, but also helpful throughout the body.

After a few nights of this, I’m already seeing benefits. The biggest one is that my rashes are not showing up! My face, chest, and arms have been normal looking for a few days. I’m absolutely floored and thrilled.

It does make me wonder if my rashes lately have been more due to MCAS than SJIA. Notably, I haven’t had much of my odd undiagnosed symptoms the last few days, either.

K's hand with three green and white capsules (nortriptyline), one pink pill (etodolac), one white capsule with black writing (Lyrica), and one pink square pill (Montelukast)

Birth control

I opted to get an IUD in order to get off my birth control pill. The extra estrogen could be increasing the frequency of my migraines.

That got put in on Tuesday. The process was incredibly painful and I almost passed out and/or threw up. I’m still kind of processing it but, to be honest, it was traumatic. The strings have, at least, stopped poking my insides.

GI

I also had a GI consult on Thursday. It was a really thorough visit and the NP I saw was incredibly understanding. I was migraining while there and she was very patient with me having a hard time with some words.

After talking more about my history and some of the things going on, she is concerned that I may have a type of IBD instead of IBS. Things like waking up at night to poop and rarely being hungry or only eating three bites of something to feel full are apparently not normal for something like IBS. In order to rule IBD – or another digestive issue – out, there are a few tests we have to run. Next week, I get to collect my poop and bring it to them for testing.

At the end of the month, I’ll have an endoscopy and colonoscopy. It may be able to give us answers or, at the very least, it can rule out something more serious.

Unfortunately, we noticed that my heart rate has been faster for… a while now. Combine that with my lightheadedness and nausea, and the NP is concerned about my heart… which means yet another appointment I’ll have to make.

Funny enough, it’s that issue that I’m focused on… mostly because heart stuff could easily point more towards MCAS or something else. If I’m honest, that’s scary. I’ve spent several days recently contemplating mortality because that’s what I do best. It’s not been great for my mental health.

So many appointments

This has been a collection of a ton of appointments and calls. It means that I’ll have a ton of follow-ups coming up, too.

I’m tired. It’s exhausting to have to stay on top of busy providers, try to get test results, and wait for calls back. People don’t always understand how tiring it is. It’s definitely worse than having a full-time job. Hell, it is a full-time job.

Thankfully, today’s appointment is for our car. It’s nice to be on the caregiver side of things sometimes, even if it’s for an inanimate object.

Hopefully, getting my things addressed will lead to positive results. I just want to feel better physically, mentally, and emotionally.

Am I Gluten and Dairy Intolerant?

Posted on by Grayson

I think so.

Since my wisdom tooth surgery, I have been being nicer to my body and getting more protein. Part of that involved paying more attention to my metabolism – which right now is kind of crazy slow. Lame. But I digress. In paying more attention to that, I noticed that certain things make me feel horrible – not just sick to my stomach horrible, but I noticed that my RA starts to flare up more after certain foods. I thought maybe it was junk food. So then I cut back on that again and felt a little better. But the healthier I eat, the more I notice other issues.

When I eat things with a lot of wheat, or really any bread, my asthma picks up. And then about 20-45 minutes later, I feel crazy sick to my stomach. So I stopped eating bread. And then I noticed eating cereal did the same thing. I love cheese, and noticed the same thing while eating some.

And it occurred to me that what I’ve heard from people for years about dairy and wheat agitating RA could be right. So I stopped eating those things as much and have noticed that my arthritis is calming down.

Gluten intolerance symptoms are here. I’m amazed at how many I experience, and even more amazed that listed on there is juvenile idiopathic arthritis. It’s just crazy. Lactose intolerance symptoms are here. I’ve always had rumbly tummy noises (to quote Pooh Bear), but never really knew why. Now it makes sense.

Supposedly, along with gluten intolerance comes an intolerance to fructose and sorbitol. Sorbitol I don’t really encounter, because it is mostly in gums and diet foods and such that I can’t have because of my allergy to phenylalanine. But frutctose I encounter a lot… because my worst vice is soda. I’ve always used caffeine to help control my pain, and I know that I shouldn’t for many reasons, but I do. Oops. I also noticed recently that soda tends to increase the pain that I feel in my hands. So that’s fun. I’m down to one soda a day (mostly) but have also noticed that I’m drinking alcohol more… which supposedly also helps RA be less intense. And I’m not an alcoholic looking for an excuse – there are studies! I promise!

So in the past few weeks, the boyfriend and I have begun eating at home more, incorporating more healthy grains and vegetables into our diet. We still eat out one or two days a week, but we save it for the weekends (or special occasions) and it’s only one meal a day. We are spending more money at the grocery store, but less money elsewhere, and that is also helpful. It’s not always easy to find foods without dairy or gluten, but I’m finding out the best places to look, and that’s a start. Whole Foods has a lot, but so does Woodmans, a local grocery store.

It’s fun to eat healthier, and I feel so much better lately. The only thing that will make it better is my upcoming job change. Standing on my feet for 8+ hours, the stress, and all the things I end up doing extra are not worth the pain that I then experience… especially since it seems as though my current employers could really care less about the accommodations that I need… which is really sad, but oh well I guess. I could be mean, and take it further, but since I’m leaving I won’t. I’ll just get excited about this being my last real week, save two more shifts the weekend after next.

Back-ack-ack

Posted on by Grayson

My back started to hurt last week. I just thought it had to do with the fact that I checked out a crap load of books from the library. But over the weekend, while at work, my back began to hurt even more. It has gotten to the point in the last couple of days where I’m basically lying down in bed, trying to find a comfy position, and not doing really much of anything else for hours… like last night. It’s really starting to be unbearable, though I slept a little better last night… but that was probably because of my half glass of wine, haha.

I’ve also been REALLY hungry lately. We’re not talking about the run-of-the-mill I-haven’t-been-eating-enough thing. Oh no. I’m getting hungry sometime between 2-3 hours after I eat – even if I eat a ton.

I’m starting to wonder if these have anything to do with the tapering of the prednisone. Today was actually my last day taking it. I really felt so much better taking 5mg every morning. As soon as I dropped the dose, swelling came back… and that’s when my back started hurting. Hmm.

I’m not excited to see the full amount of swelling come back over the weekend. I just hope things stay mild, but I doubt I’ll be that lucky. Blech.

Oh, and I’ve been having weird dreams for a while now pretty much nightly where I wake up in the hospital – without knowing what happened, of course – and the people closest to me are all there and super worried. No one ever says what happened. All I can hear is the beeping of the medical equipment, and my vision of everyone is really soft. It’s almost like waking up to my alarm clock and that noise being so deafening that it drowns out all others… and being so tired still that everything is blurry. I just kind of fall back asleep and that’s the end of the dream.

Is this me dying? Or my subconscious trying to handle how worried everyone gets about me, and my illness? It’s just too cryptic to know.

Are You Hungry?

Posted on by Grayson
I’ve been going through one of those periods of time lately where I’m not really all that hungry. It’s really frustrating, especially being hypoglycemic. I have to eat every so often, or I get grumpy. I also tend to get worried about the struggle I have with the eating disorder that mostly developed in my first year of high school. It really makes me worry whether or not my lack of appetite is due to my RA, which has been known to happen.

Rash: after my post yesterday, I noticed that my knees had some pretty bad rash

Pain: jaw again, stupid wisdom teeth coming in
Inflammation: a little in my jaw
Meds: I took three ibuprofen last night before bed, but they’ve definitely worn off by now, haha
Stress level: right now it’s not bad-ish
Other notes: I’m getting super excited for my trip!!
Things to make you smile: Umm, you need to watch this show because it’s hilarious

Delicious

Posted on by Grayson

I wanted to expand more on the dietary stuff surrounding Still’s Disease.

The site that I put up a while ago talked about diets for those with chronic pain ailments, including arthritis. The ten things they list are:
  • Thou shalt have no foods but fresh
  • Thou shalt not become a caffeine addict
  • Thou shalt not treat all vegetables equally
  • Remember omega-3s, and consume them liberally
  • Honor thy yeast, and use it sparingly
  • Thou shalt not eat too much dairy
  • Thou shalt not commit carb overload
  • Thou shalt go easy on aspartame
  • Thou shalt not bear a diet with additives
  • Thou shalt not covet thy coworkers junk food
Obviously, this is not an easy diet to maintain, especially if you are a college student. Heck, I’d love to eat Taco Bell and drink Mountain Dew everyday for the rest of my life at this point. I had mentioned in an earlier post that the only “commandment” here that I really follow is the one regarding aspartame, which I’m allergic to. For more on the main ingredient I’m allergic to, go to my other blog.
Eating anti-oxidants are good for the body, so fruits like apples and strawberries as well as green tea are good things to keep around. Vitamin E, calcium, and proteins are also essential to get in your diet.

Appetite

Posted on by Grayson

So yesterday, I had an ensure for breakfast… a handful of chips for lunch… some popcorn at the movies… and an ensure at like eleven. I’m just not hungry for some reason. Obviously, it bothers me that I’m not eating. I usually do alright with trying to make myself eat a little bit. Right now though, I think this appetite thing is the worst it’s been in a long long time.

UGH.

The Hunger

Posted on by Grayson

My appetite, she has returned. It is a miracle!

Or it could be that the last thing I had to eat was a cinnamon roll and coffee at ten thirty or so last night.
In either case, it’s nice to be hungry again. My knees are a little tired from running around a lot yesterday in Appleton with my friend Kyle and all the working I’ve been doing lately, but I’m definitely having fun. Next weekend, we have Kelsey’s MRI and EEG appointment. I also have two concerts to go to and we move to the house up the hill from us. So busy! I’m sure that I will be hurtin pretty good after all is said and done.

But I’m Not Hungry!

Posted on by Grayson

My sister has not had another seizure. She has an appointment to do an MRI and an EEG on June 11th at Children’s Hospital. Hopefully, if there’s anything wrong to find, those in-depth tests pick it up. She’s been sleeping a lot lately, which she is worried about, but I am convinced it’s a good thing. My finger is no longer as numb as it was… or I’m getting used to this strange feeling. The infection seems to be gone, or mostly so, and I’m hopeful that I’ll be fine.

My left shoulder is feeling a little screwed up at the moment because I fell asleep in a chair this morning for a nice little cat nap (forget the fact that I had a nightmare). My knees have been doing a lot better lately, which is both nice and odd.
The biggest problem that I am having right now is the loss of appetite. When I was about seven, I began to throw away a lot of my food. I just simply wasn’t hungry. My mom maintains that she is to blame, because she had apparently said something about me being chubby, but I have no recollection of that comment at all. I just remember not being hungry. I lost a lot of weight and got down to under 50 pounds. Occasionally, I will experience this same problem. I know that I have to make myself eat at least three times a day, but there are days where it just isn’t high on my priority list. Usually, this only lasts for a few days, but it has been known to go on for weeks on occasion as well.
This past weekend, my boyfriend and I went up to Appleton for the D-3 World Series in College Baseball. I didn’t eat a lot, not because I didn’t want my boyfriend to spend a lot of money (which is also true), but because I simply wasn’t hungry. On Sunday, I ate almost a whole Subway sammich and a cookie. This started for me on Thursday night and I have yet to really come out of it. At least there are enough delicious foods in the fridge to hopefully keep me eating three times a day.