Tuesday, August 23, 2016

what's been going on lately.

Since I haven't posted in so long, I wanted to do a health update for those that are curious about where I stand with my health currently. It's been almost a year since I posted one of these and although not much has changed, a few things have.

- I started seeing a new Primary Care doctor. I typically only see specialists because my health conditions are all ones that are mainly managed by doctors that are in specialized practice (ie. urologists, rheumatologists, cardiologists, etc.). However, because my "fibro fog" (the nickname for the type of brain 'fog' or memory difficulties that are a symptom that some patients with fibromyalgia have) seems to be getting worse and I sometimes have difficulty remembering all of the important information about my medications, appointments, and diagnoses, it seemed like a good idea to find a Primary Care physician to oversee everything. I was lucky and found a wonderful nurse practitioner on my first try that I really love. Her name is Erica and she is very thorough - she actually reads my chart and notes to make sure all of my concerns are addressed, she remembers what was talked about at the previous appointment and actually cares about what happens to me. A doctor I don't dread going to, how novel!

- I got diagnosed with Irritable Bowel Syndrome. It was suspected for a long time that I had this, but with Erica's pushing, I finally started taking it seriously. I was having more frequent 'death pains' - that's what I call the pains I get in my intestine that feel like someone is literally stabbing me to death. They stop me dead in my tracks, no matter what I'm doing, and take my breath away. I can't move until they go away, and the pain is absolutely unbearable. They used to be accompanied fairly quickly by horrible diarrhea, but more and more they were occurring by themselves. When I mentioned it to Erica, she suggested that I see a gastroenterologist. Along with other symptoms, she diagnosed me with IBS.

She also suggested I go completely gluten-free for a month, so I did. The first two weeks, I was strictly gluten-free, including grass-fed beef, no chicken (they eat grain), no oats, gluten-free pasta, only gluten-free make-up, etc. I didn't notice much of a difference in my symptoms. The second two weeks I was less strictly gluten free, introducing chicken, oats (while technically the oats are gluten-free, they're not allowed to say so because the factories where they are produced also produce other gluten products so they don't meet gluten-free food requirements), and makeup. I also didn't notice much of a change then, either, so I don't have a gluten allergy. However...

- I found out I have a chocolate sensitivity. While detailing every single thing I ate or drank for the entire month of my gluten-free test diet, I noticed that two things always gave me bad diarrhea within about one hour: tacos and chocolate. I already knew about the tacos before I began my diet, and I will still continue to eat them, because... Tacos. Duh. But the chocolate was a big surprise to me! I haven't ever eaten a large quantity of chocolate, perhaps just a few times a week. But any time I ate just the smallest amount, it would react negatively with my body. It doesn't discriminate, either - chocolate milk, syrup, ice cream, solid chocolate in bar form, brownies - all kinds of chocolate will do it. I didn't think I would miss it too much and I didn't at first, but now... My life is sad without chocolate. Oh, well.

- I got diagnosed with Psoriasis. When I was about eight years old, I fell into a frozen creek up to my waist on accident, and developed a rash reaction on the inside of my elbows and my inner thighs. Every year after that, on the very coldest days of winter, the rash would come back on those same places and eventually also on my outer biceps as well. It was a scaly rash with raised bumps and would itch and burn. We chalked it up to a yearly stress reaction to the original trauma and didn't think anything of it. About 10 months ago, I started getting the same rash on my ankles. At first, I thought it was from bug bites (we lived in an old farmhouse at the time), but it kept spreading and itching more and more. Eventually the rash was in various places all over both legs, from my ankle all the way up to my buttocks, primarily surrounding my joints, was itchy, and burned very badly when I took a bath each night and my showers. These photos show what my legs looked like the night before I went to the dermatologist.

I went to the dermatologist earlier this year and a full body scan was done since I have had two precancerous moles in the past (none showed up this time). Then my rash spots were examined and biopsied. They weren't sure what exactly they were because they had never seen them before - the nurse practitioner and doctor both were baffled. Gotta love being the guinea pig case, as I have been so often in my short life! Anyway, after checking the biopsy and finding it negative for fungi or any other infectious diseases or things like that, they asked about my other diseases and symptoms. Based on those, the diagnosis they came up with was Psoriasis. They gave me a topical steroid cream to apply which I quickly used up (the bottle was very tiny!) and didn't see much of a result afterwards. After another visit and more examination of my legs by yet another doctor, a different cream was diagnosed in a larger quantity. That cream finally helped to treat the rash. It's not cured and never will be - I will have flare-ups and remission periods, mostly based on the health of the rest of my body and the weather (cold weather makes it worse). 

The steroid cream helped to make the rash almost disappear for the beginning of summer, which was nice because having legs that look like something out of Creatures of the Black Lagoon makes it very difficult to want to wear shorts, let alone a bathing suit. I have had to "touch up" throughout the summer, especially after swimming in the ocean - the saltwater burned my legs pretty badly, as did swimming in a local lake that has a lot of swimming and boating traffic. I haven't had any problems with the spring-fed lakes and streams we go to frequently, however.

- My Amitriptyline and Gabapentin doses increased. I now take 75 mg of Amitriptyline (up from 50mg) and 300mg of Gabapentin, one capsule in the morning and two at night (up from 100mg at night). The Amitriptyline increase was to help my migraines, which it does help. The Gabapentin is to help my Fibromyalgia, which it seems to have done, but is hard to tell because of the ups and downs in the pain cycle of Fibro. I am far away from the upper limits of the dose so I will probably increase it again at my next PC visit.

- I started the DepoProvera shot. After having my stroke and finding out about my blood disorder, I immediately stopped taking my birth control, since it can be very dangerous for people with clotting problems. I decided to not be on any pill form of birth control for a while, both to give my body a break from the hormones and a chance to see if, after being on them for so long, I would be able to get away with not having to take them. Sometimes, if people have been on them for a long period of time, they are able to stop taking them and still maintain the low bleeding, low pain effects afterwards.

The first month wasn't too bad, but the few months after that were horrendous. You know how something hurts so badly that you kind of block it out of your mind so that you don't have to remember how utterly awful it was? Apparently that is what I did, because I suffered through this ridiculous pain for three whole months before I started the Depo shot. The first period day of each month, I felt like someone had shoved their hand inside my uterus and was trying to pull it out of my body with no anesthesia, while punching me in the face the whole time. It was insanity. I have no idea why I let myself go through it for three months, but I did find out that my body still cannot handle having a period on its own, so I guess that is the only good thing that came out of it.

I just had my third DepoProvera shot, and it's great! The day I get my shot is a little rough because the injection site does get quite sore and it's painful to sleep on for that night, but if that's all it takes for the relief of three months then I'm okay with it. They give you a few week window to get your next shot in and I have noticed that if I push my shot later in the window rather than earlier, I do start feeling emotional and irritable, like I'm getting some PMS symptoms. So, I always make sure to schedule my next shot as soon as possible to avoid that.

- I tried going without my IC "cocktail" (Elmiron, Hydroxyzine, Trospium Chloride) for two months to see if it made any difference. This wasn't necessarily a doctor sanctioned idea, but more of a thing that happened because of my doctor. After running out of my medications, I called for refills and my urologist said they wouldn't send in new prescriptions to my pharmacy until I saw him again. Okay, I understand that. So, I tried to make an appointment with him.. and they didn't have any new appointments for two months. Even though I explained the situation and how much not having my medications would affect me, the fact that I've been seeing my same urologist and have had the same prescription doses for four years, it didn't matter and they wouldn't move my appointment. Then, the day I arrived for my appointment, I was filling out my intake forms only to find out that they had double-booked my time slot and the doctor wouldn't be able to see me that day - I would have to come back four days later, and no, they couldn't even give me a few pills to last until then, either. Needless to say, this whole debacle was extraordinarily frustrating!

Regardless of that, I ended up off of my IC "cocktail" for those two months, and while my Primary Care doctor could probably have written me prescriptions to hold me over, I thought it might be a good opportunity to see how the pills were truly affecting my body, something I frequently wonder about. Experts say that it takes six months for Elmiron to kick in and start working, and I honestly didn't notice much of a difference on that alone. I noticed a huge difference with the other two, however. Within about a week to a week and a half, I was having difficulty sleeping, feeling more depressed, having dull, constant pain in my pelvic area, having sharp, shooting pains in my bladder, pinching bladder pains, I was having a really hard time starting my stream when I went to pee, and speaking of peeing -- I was going about every 15-20 minutes all the time. I had to decrease my water intake to accommodate the frequent urination and stop drinking anything 4-5 hours before bed just to try and be able to lower my night time peeing to 2-4 times. It was really rough. I was so grateful to get my new prescriptions and start taking my medications again!

Those are my most recent health updates. I will continue to update anything important as needed and like usual, if you have any questions, feel free to ask!

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