Okay. I want to post tonight, because I'm feeling a bit hopeful about things lately. I've had pretty much weekly doctor's appointments with various specialists, and some things are going well.
Neurological:
I have seen another new neurologist/migraine specialist. And I like this one a lot better. The biggest thing we changed at my first appointment is deciding to bypass the digestive system all together with my abortive treatment. So, I'm using an injectable triptan and a nasal triptan. So far, so great!!! It hasn't been long, but they seem to work so much better, faster, and more reliably, with less side effects. If you can treat the migraine soon enough, it shouldn't drag on for so many days. I love both of these medications so far.
Still, if I'm triggered by the weather or a perfume, abortives seem to be much less effective.
In addition, the new neurologist is getting prior authorization from Blue Cross for me to have Botox treatment, which she does herself. I'm definitely nervous about trying it, since both the positive and negative effects last about 3 months. So, if I have an adverse reaction, it will last for 3 months. But the prevention of migraines should be worth the risk, right? I'll have to work through some anxiety for this one.
Separate from the migraines, I have been having some trouble with swallowing recently. I've inhaled solids and liquids a few times.
Cardiological-POTS:
This has been pretty good lately, for me. As long as I maintain regular aerobic exercise, my symptoms are pretty easy to manage. I also have a ton more energy the day after exercise, which is a huge motivator. I have times with bad arrhythmias and low blood pressure. But usually, the first 6 hours of my day, my POTS is pretty bad, but the following 6 hours of my day, my POTS is pretty good. Not that I can stand in place very long. But I can manage.
Allergy/Immunology-Mast Cells:
I saw my immunologist again today, and finally got a prescription for Gastrocrom. I believe this doctor thinks I'm a bit stupid, and maybe anxious. But he's willing to prescribe a mast cell stabilizer without clear-cut proof of the diagnosis. So, I'm very grateful for him. I haven't actually received this medication yet, so I can't yet report on the effectiveness.
Digestive:
Digestion is going really pretty well. My diet has expanded a bit, and most days my symptoms are minimal. I get flare-ups of pain and symptoms for no apparent reason, but most days are pretty good.
In case anyone is interested in what's been working for me, I follow a low fodmap diet (recommended for IBS), as well as a low fiber diet (recommended for Gastroparesis). Gluten doesn't seem to be an issue for me, but I mostly avoid it anyway. I also have to follow a low histamine diet, but that is for mast cell/allergy issues.
Currently, I'm eating these foods most days:
Oat-based cereal
Almond Milk
Egg
Cantaloupe
Rice Cakes
Peanut Butter
Cucumber - This is new, and I'm currently able to tolerate it raw and with skin!
Cottage cheese - This is new, too. I do best with the Lactaid Cottage Cheese. A great new source of protein for me!
Quinoa cooked in chicken stock
Carrots
Green beans
Asparagus
Grapes - Also new!
Homemade muffins made with oat flour and blueberries
I'm really happy with this diet. The variety is really nice! I've also been able to get away with eating out several times now at certain restaurants. I just have to order really carefully!
Musculoskeletal-EDS:
I've had to start using my wheelchair more often again, due to the severity of my foot pain. The podiatrist doesn't think there's anything else to do for me. So, I'm just managing. Still so grateful I have these custom orthotics, because I'm absolutely worthless without them. They just don't help enough anymore. I just had to practice some acceptance on this one. I mean, who really needs to walk around Target? Using a wheelchair is an inconvenience, but not the end of the world.
I also developed really severe pain in my tailbone/sacrum area. Luckily, I ordered a coccyx cushion from Amazon, which has mostly relieved this pain pretty quickly.
My neck is still generally painful, along with the rest of my spine. The soft collar I usually wear is helpful though. I still have to use the hot rice bag on my neck daily, as well as trigger point massage daily. The muscles are tight as ever.
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We had a wonderful trip to Boston last month!! Of course, my activity was pretty limited. But we had a great time with Chris and Kathleen. :) They really helped me to feel at home. I only had one major migraine while there, due to lack of sleep the first night. I was able to eat out 3 times! It was a wonderful change of pace.
We also have some news. I'm having to work through a lot of anxiety for this one. But we may be adopting a dog soon! I obviously love dogs, and I would love to have a companion during my husband's long work days. Some days, I really question if I should consider taking on the responsibility for another life, when I can barely manage my own some of the time. That's why we're meeting a low-energy senior dog, who is also quite small, hypoallergenic, and said to be very quiet. I've been looking for this kind of dog for at least a year, and we're going to meet her tomorrow and see if she is a good fit! Obviously, I'll be posting about her next time if we do adopt her.
My piano lessons have been going really great. I love the 4 students I currently have, and I haven't had to cancel too often. Some days, it is a huge struggle to get myself and the apartment ready. And it's still really hard to decide if I'll be up to teaching when I'm having a bad migraine or a rough day. But I'm overall glad that I am teaching.
My stamina really has been better on my good days. I don't need as much recharge time between activities. But I can only maintain this if I make time to exercise. I need to ride the recumbent bike for at least 30 minutes, at least twice a week. I really start to drag if I don't make time for this. My heart symptoms get worse, my brainfog is terrible, and my energy level gets really low. It is great motivation to keep it up. I also have to work on my core strength for spinal stability. I've been doing quite well with exercise lately. I just can't let myself get too busy or make too many social commitments, or I pay for it.
I am endlessly grateful for my family's support, as always. I would not be in this position without them. A position where I can actually feel hopeful again.
