The F word is officially going to be Fibromyalgia now. So from here on out if I reference it, I will say the F word. In regards to the actual F word- Fuck- I will be more than glad to spell that out :) Why? Because I like that word. There's a great documentary on that by the way- it discusses how the word came about, the original meaning, etc. Not what you'd think.
Anyways, back to why I haven't been on here forever. Yea, the longest I've been absent from here actually. Hoping to never do this again. It's not that I haven't wanted to write, I've just been that sick. Then there was the holidays. Who isn't busy around the holidays right? What's happened since then? Way too much as usual. I'm just going to skip around as things come to mind.
I've recently been diagnosed with the F word. It actually came as a surprise at my second pain clinic appointment. The previous week I had been at my rheumy's and had a change in symptoms over the past month (at that time). My rheumy had marked it in my chart that it's fibro, so the pain doctor was like oh, you have fibro too? I was like huh? Nothing like being thrown for a loop. Especially when you've had a long night (we were in the hospital the night before for Jason's grandfather) of barely any sleep. So I emailed my rheumy, she said it is a consideration based on some of my symptoms (this is the short version of her note) The pain clinic doctor then did the official diagnosis at my appointment that day. So here I am with another diagnosis. How do I feel about this? It is what it is. One day at a time.
I've also started seeing a psychologist to deal with loss of my old self. This is never an easy thing regardless of what disease you have. Even life changes not related to an illness. I've talked about this before, so I'm not going to touch too much on it. Hoping she can help me get past the difficulty of it. Is it even possible? Or is it going to be something I deal with the rest of my life or until I get better? I think I've taken this step quicker than most people have. It's a difficult thing to admit you need help with. The reality is with this disease, it is a HUGE change in your life. You may not realize it at first, but as you get sicker and sicker (as most of us do) there just comes a time when you realize it's not going away and this is your life. It's not that you should accept defeat, defeat is different than accepting your situation has changed. It's not a giving up because there is always hope, even if it's small. It's just accepting. I've started reading a book about another's struggle with getting sick, it's called: How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard. I'm only about two chapters in but so far it's kept my interest. Plus 5 stars on Amazon- how many books get that?
Pain clinic update? Sure why not. I'm settling in to this pain clinic. They aren't the warmest but hoping with time that will get better. I should say the doctor isn't the warmest but I try to think of all the shit she has to deal with from patients. It always amazes me the variety of people I see there- young, middle-aged, old, male, female, pregnant ladies, etc. It's always a reminder that you never know what someone else is going through, so don't judge. And most of these people do not look sick. I've started doing biofeedback therapy, which I can't recall if I've talked about before. It's basically meditating to help relax you and get rid of the pain. It's trying to get your autonomic nervous system to take over. It's a lot like doing deep breathing exercises in yoga but add guided imagery to it. I like it a lot but the problem I'm having is 1) being able to keep being that relaxed all day long just isn't happening. It's great when I do it but once I'm out of that trace like state, well it's just not the same. 2) if I'm sick or in excruciating pain that day I cannot get into it. Maybe practice will make perfect? Who knows. If any of you are interested trying some exercises, here is a link ( I am in no way endorsing Kaiser P. as I've heard they are not that great when it comes to health care from friends and doctors I have worked with):
https://healthy.kaiserpermanente.org/health/care/!ut/p/c4/FcpBCsMgEEDRs-QAwyAkOnYXor1Ca3eDGVIhahCbXr8Nf_f4-MJ_hc-0cU-18I5PDFFKl3bjz5oqnGmVio_rOxpvmTGUCpHjWy7j1lPcBYPz1iyT86Ct1qCUVzDb0QERTUYZM95pwSNn-s7D8AN76O4U/
At biofeedback, Cindy (the biofeedback lady) had mentioned acupuncture. I told her I tried it in the past but it never helped with pain/headaches but I did get very relaxed from it. She suggested I should give it a try again if nothing else it will help to relax. Maybe with another diagnosis they can target my symptoms better.
The eyes are up next. I've started seeing an ophthalmologist instead of a optometrist at the recommendation of a friend who had complications with her eyes from this disease. For those of you who do not know the difference, an ophthalmologist is an actual medical doctor. This is critical for those of us with BD. I am very happy I switched to seeing him. I learned that my tear film is not working correctly resulting in some of the symptoms I'm having. He explained it as normal people have what looks like a lake, where mine are like a shallow lake. He says this is very common in people with autoimmune disorders. I am trialing a preservative free eye drop called Oasis for a month. If this doesn't work for some reason, then I can either try Restasis or get an implanted plug to help the problem. I'm hoping this works as I'm not too keen on an implant or a new medication. Why? My body doesn't tolerate procedures or anything invading it and given my track record with medications, I don't want to add another allergy/intolerance to my insanely growing list. In fact at the eye doctor, the nurse said I have the most allergies she's ever seen and it just might be a record. I wanted to tell her about a patient I had once who had something like 33 allergies. If I ever get close to that, I just may call Guinness Book of World Records...
What about my new injectable med called Kineret? I did OK with it for a while. Then out of nowhere I developed some odd symptoms. By odd I mean any needle stick hurt like a motherf#@%$#, I couldn't even get to injecting b/c everything was amplified by 100%. No joke. At first I thought it was because I hit scar tissue, then thought perhaps a bad needle or the injection site itself, or the lot of medication, so I switched and changed things around to no prevail. I also had developed some redness in the areas. I then gave up for about a week and tried again. This time, no problem. I thought ok, maybe it was due to a flare up or the fibro (I'm learning about this still but my understanding is pain is very off with this disease). So I was able to make for a while, then boom, complications started again. This time I sent a message to my rheumy. She said that it sounds like a pathergy reaction due to BD. I've had bumps after needle draws before but nothing like this. So I'm hoping acupuncture will be OK since I am a lot sicker than I was when I was doing it before. She also said that if I haven't seen a change since starting the Kineret to stop. I see her in a couple of weeks, will then discuss what's next. I'm suppose to be getting Lyrica this week. It's been taking forever to get from the drug company. Don't get me wrong, I'm thankful I can get it for free from them, but months? Come on pick up the pace a little. Just a little. Please.
What else could I possibly blab about? Lots actually, but I will spare you the boring details...or will I? :) No worries, I'm almost done. Since this whole modern medicine isn't helping me like I need it to, I'm going the more traditional route. I'm planning on seeing an herbalist in the next month or two at the most-I will have to pay out of pocket. I figure what can it hurt? People have been using herbs for centuries to treat diseases. Something has to be working right with them.
Instead of writing a quote, there are a couple of things I've run across on the internet that I've taken a fancy to. Oh how true they...Remember February 28th is Rare Disease Day. Please spread the word.
