Chronic life: June and July 2017 doctor visits

I actually had a bit of a break from appointments in June because a good friend visited but that’s not the point of this point. The point of the post is which medical professionals did I see.

June was definitely a quiet month. I’m still going to the chiropractor weekly. Both the adjustments and the acupuncture help. Actually saw the chiropractor five times in the month of June. Then I had physical therapy twice. I’m glad I can manage that twice a week now. I received my Xolair and that was a happy day. And then beyond that I just had a counseling session – which made me realize how damn busy I’ve been in the past 6 to 8 weeks – and I had my – what do they call it? – “women’s health exam” and had hormone levels checked too.

That’s only a total eleven appointments in the month of June! Ranging from 25 minutes to a little over an hour. Each appointment is 50-60 minutes in the car, round trip.

And now we’re in July.

This Friday I get my next Xolair shots and see the chiropractor. I’ve got 3 or 4 chiropractor appointments scheduled. I might cancel one depending on how I feel. I only have one physical therapy session scheduled so far. I might wait 3 weeks for the next one. I’ve got a physical scheduled with my new-ish internist and I’ll have to go on another day to get the labs done since I have to fast. Beyond that, there’s three different specialists and then a hand sonogram.

So let’s see, that’s a total of eleven appointments again. And that doesn’t count the dermatologist visit I probably need to schedule and another round of Xolair if I can really (fucking finally) get it scheduled for 3 weeks now.

All of this while somehow managing to game, go to the movies, and make it to knitting group. And four and a half days of migraines. Seriously, about 86 hours, when I look back at my migraines app. Just 4 different migraines though.

I wish I got paid for my job instead of having to pay other people. Or maybe an assistant to keep track of my schedule at the very least? I’m a professional dammit!

Today Recovery, Tomorrow Writing

Today I’m wearing a knit wool hat even though it’s 70 in here (and rising) and my head has menthol on it. The migraine is down but the nerves are still twingy AND I woke up an hour and half later than normal. I’m so stiff but I’m not sure I’ll be able to stretch today either.

Tomorrow Camp NaNoWriMo starts. I’m aiming to write some poetry. I’ve already done some minor brainstorming and set aside a notebook. I draft poetry better on paper. I’ve also got a book on types of poetry. I’m hoping to test my abilities and learn some things this month. I think I’ll plan on a novel for the next round of Camp NaNoWriMo, depending on what’s going on.

In preparation, I have printed out some signs to hang around the house. These kinds of images still amuse me.

Both found on the Internet – searched google for you should be writing Neil Gaiman pictures.

I’m hoping poetry written on paper, as compared to a novel in Scrivener, will make it easier to write even when I’m in doctor’s waiting rooms. I’ve got three doctor appointments and one lumbar puncture in the month of April. Here’s hoping the lumbar puncture does not cause me any headaches or leave me recovering flat on my back.

In other news, I’ve found decaf coffee I can drink with no unfortunate effects. I didn’t have coffee for last November’s NaNoWriMo.

 

you should be writing

GaimanNeil

Immunologist visit – case study part 1

Last week I went to a follow up appointment with my immunologist. An immunologist is a bit like an allergy/asthma doctor except they know more about the immune system. My immune system is a special snowflake. This was my first follow up since my doctor said he would do a case study on me – as compared to throwing his hands up in the air and running in fear. I showed him information on histamine intolerance and the low histamine diet.

I waited 30 minutes and the visit with the doctor himself was about an hour and a half long. He took notes on his laptop through most of it. (MacBook Air) We went over a lot of things, including my migraines, asthma, allergies, food sensitivities and how easy (not) it is to be on the low histamine diet.

My biggest complaint for him was probably that I have to adapt the diet to me, there is conflicting sources of information about the diet, and despite my best efforts I can still have pretty bad breakthrough symptoms. Ok, those might happen on days I have chocolate – but there are other days I have chocolate where there are no breakthrough symptoms!

I also seem to be having problems with environmental triggers being worse. I explained some fun that took two days to recover from after sitting for about 20 minutes on my SIL’s couch. Shortness of breath, thrashed sinuses, foggy brain, the works! I’ve also been having problems waking up coughing in the middle of the night, like clockwork. I’ve since figured out that was a combination of two things, which I also told my doctor about. First one: environmental. Because of the fibromyalgia and increased commute times – we’ve gotten lax with vacuuming. You cannot get lax with vacuuming when you have four cats. I vacuumed the bedroom the afternoon of the doctor appointment and no coughing that night. Second thing: likely culprit was PABA in the vitamin b complex I was taking. It’s possible to be allergic to PABA and my breathing difficulties and gastrointestinal issues (I’ll spare the Internet those.) were likely caused by PABA. Especially since the issues got better over the course of 1-5 days after I stopped the supplement.

After discussing with my doctor, I’m going to research¬†which¬†b vitamins are useful for fibromyalgia and just take those specific vitamins instead of taking the lazy complex approach. (I’m already on just riboflavin for my migraines.) My doctor also didn’t have recommendations for me – he suggested I go with what I know my body will accept. Research required.

I kind of wanted steroids to help me get over the (likely) PABA reaction but I also didn’t necessarily want to deal with the side effects. My doctor told me to call if my asthma problems continue – even after I’ve recovered from the PABA reaction. My breathing issues have gotten better since vacuuming the bedroom and just with more time passing but I’m still having weird issues! I’m giving it a little more time and probably still calling the doctor so we can look at my asthma medicine.

Thankfully my allergy medicine seems to be keeping up. My hives seem to be better. It’s been months (?) since I’ve had a breakout. I still need benadryl but it’s as needed – not regularly. Now I need to figure out the eye allergy problems I’ve been having – but I know know if that’s a question for the immunologist or the ophthalmologist.

Doctor told me to come back in six months because I have a lot going on with my migraines. (New patient neurologist visit isn’t for over two months.) I can still call with an update if necessary and I figure I’ll go back sooner if it seems necessary. I did also find out something important – asthma and fibromyalgia should not really effect each other. (Note to self: remember to ask rheumatologist too.)

We’re definitely now going down the path where I have a ton of food allergies/intolerances caused by, at least in part (?) the histamine intolerance. I have no idea if the gluten (and now corn) intolerances are related to the histamine intolerance. My immune system is a special snowflake who is also paranoid. It seems like most of the food allergies I showed positive before are probably false positives. Problem is I might have some false negatives too. I’m still avoiding a lot of foods and paying special attention to the ones that give me acute reactions where I cannot breathe.

I’m just glad I’ve had less problems with face flushing and hives. The face flushing makes me look and feel badly sunburned.

Next steps:

1. Get migraines under control.

2. Clean problem areas of the house more often.

3. Exercise more for the fibromyalgia / asthma.