I had a bit of a frustrating visit with my counselor yesterday (5/19). I ended up leaving there more depressed than when I went in which is definitely not a good thing. I’m hoping she can help me, I’ve seen so many counselors, trying to find the right fit. I really liked my last one but she couldn’t see me often enough. It’s important to find a counselor that you can connect with and feel comfortable with. I’m still not entirely sure about my current one. Plus she wants me to see a second counselor somewhere else because I require “more intensive care” with everything I have going on. She’s just worried about me because of my malnutrition and is encouraging me to eat and drink more. Yes, I’ve heard this for the thousandth time, thank you. If I could eat enough, I would. I like food. I miss food. I want junk. I want pizza and ice cream. If I could just go back to a normal eating pattern then I would do so. Currently I’m eating baby food apples, Jello, soup, cereal, and toast. That’s basically it. I’m barely drinking anything either. But my labs are fine, aside from showing dehydration so I’m okay (for now). So at least there’s that.
POTS update: I started Midodrine 2 days ago and I think it’s making me worse. I’ve been really tachy (tachycardia = fast heart rate) and it feels like my heart is going to beat out of my chest. My mouth is dry and has a weird taste, and I’m having killer headaches. I’m sick of medications that have such bad side effects that you don’t even notice if they’re helping what they’re trying to treat. I’m tempted to stop all of my medications but I know that wouldn’t be safe. I’m also feeling much weaker than usual, really wobbly, like a baby giraffe standing for the first time haha. If I’m out in public with my mom I’m usually holding on to her or we bring the wheelchair. Oh, the life of a POTSie.
Fibromyalgia update: I hate insurance. My new policy won’t cover one of the medications I was taking that really helped, EVEN THOUGH it’s under the same insurance company. WTF?! I need it because my pain is getting worse and worse. It’s called low dose Naltrexone for anyone who might be interested. They use it to treat a lot of different things, particularly fibromyalgia and MS. Now, Naltrexone at the FULL dose (much higher) is used to treat opiate addiction. At the low dose (only up to 4.5mg), it is helpful in treating various ailments. So if you happen to ask your doctor about Naltrexone, make sure you ask about “low dose” or they might look at you like you’re nuts. You may also want to print out information to take to your doctor, because a lot of doctors either don’t know about it or are hesitant to prescribe it. Here is a site with a lot of good information:
This scholarly journal article may also be helpful to show to your doctor:
So anyways, I’m still REALLY nervous about starting my iron infusions on Friday. I’ve heard horrible things about side effects, and that it can take a week or more to even feel the effects. I’ll have this infusion and then another one next Friday, and we’ll go from there. I’m very surprised my insurance is covering them because they’ve been fighting me on everything else lol
Next week I have a gastric emptying test to evaluate for gastroparesis. During this test, you eat some egg beaters with a radioactive tracer, and toast with jam, along with some water, all within 15 minutes. They then take X-rays every so often to see how fast or slow your stomach is emptying. Slow = gastroparesis. I had this test once before, back in the fall of 2014, and it didn’t go well. I got really sick so the results were invalid. I’m concerned I’ll have the same reaction as before and yet again have inconclusive results. It’s all just so frustrating! If anyone knows, it’s my fellow chronic illness sufferers. These doctors, and medical professionals in general… I could go on and on, but I won’t for the sake of my sanity and yours.
I hope everyone is doing well, or as well as possible. Keep fighting. You’re stronger than you think.
If you can, I would so appreciate you taking the time to read my story and donate if you can… I’m trying to raise enough to be able to get a service dog.