Compassion society…

I was lucky that given the severity of my fibromyalgia, and having been diagnosed by one of the leading rheumatologists in BC, and having had the benefit of a very good family Dr. and specialists, that getting an official form from my family Dr. for the compassion society was a simple form fee away.

It’s strange though. I’ve never used marijuana recreationally. Not a once… it’s weird to be 39 years old and taking pot for the first time, granted I’m not smoking it, but eating it in baked goods and tinctures… but still kind of odd. I just don’t like to feel ‘altered’… I like a clear head.  It’s actually a lot like the synthetic pure cannabinoid prescription they put me on.  I haven’t been using very much of it, just a cautious add on to my other prescribed mediation, but I’ve been impressed with how little side effects and how mild a medication it is.  It doesn’t make me feel altered in any way really, except for relaxing my body and easing some of the pain.

I was chatting with a woman the other day with a similar case of fibromyalgia to mine (they can vary quite a bit in severity and symptoms). She spends most of her life in bed on a morphine drip. She’s never had the opportunity to access cannibinoids, synthetic or otherwise. I wonder if she’d get better relief with it. Opiods don’t really work for the fibro pain, they didn’t for me, and she says really they don’t for her, other than make her not care about it. It’s still there, she just copes better… spooky.

I don’t ever want to be there. The fibro does seem to be worsening slightly over time, but I keep finding things that help counter act that. I just hope I can keep on top of it, and it levels off, or tones down somewhere where I can have some stable pain management.  The massage is making a difference. Again because of a combination of expert diagnosis, the degree of severity, and a good medical plan. I have unlimited coverage for therapeutic massage. In June they’re going to add acupuncture into my program, and then chiropracty, which I’ve never done either of those before in my life.

The massage therapists keep mentioning not only the degree of muscle knotting and the tightness of my joints and connective tissue from the fibromyalgia, but also say part of the problem in some areas seems to be scar tissue formation in my body.  The rheumatologist and the neurologist seemed to agree that it was likely that my fibromyalgia was triggered from major surgery, which can sometimes happen in someone pre-disposed.  Since I started developing symptoms post major surgery, that I just never really recovered from.

The major surgery was a hysterectomy. Where they had to take my uterus and my cervix, but were able to save my ovaries.

It was a few years ago when they discovered rapidly growing fibroids in my uterus. I’m a very stoic person, with a high pain tolerance. So I assumed the uterine cramps that seemed to be getting more severe in my adulthood were normal. I was never one to take pain medication, or to see the dr. unless there was something serious. So I only discovered the fibroids when they became very palitable. I was over weight at the time, so it helped them remain undetected. Usually they are caught earlier because of the degree of pain they cause.  It wasn’t until one got too big for the blood supply and died in my uterus, which is extremely painful, that they caught the situation.

Usually fibroids are relatively small and manageable and you can treat them rather than do a hysterectomy. In my case. They posed some danger do to the size and growth. I had 3 the size of grapefruit, and 16 in total. It seems when it comes to illness, my body doesn’t like to do things small… LOL.

But now I’m wondering if the two massage therapists both noticed and mentioned the scar tissue if I it’s something I should be concerned about, probably not. I mean, I would expect there to be scar tissue.  It’s not the first major surgery I’ve had in my life, I’ve been under a number of times unfortunately, so there are probably pockets of scar tissue for an array of things in an array of areas.

When I’m having flare ups, like I am now. I get the whole fibro-five effect. Urinary cystitis is part of that… essentially it gives me the same symptoms of a UTI (urinary tract infection), without the UTI.  I do have an ongoing prescription for the urinary analgesic to numb the system, but the problem is if I get a real UTI, how will I be able to tell the diff? and since I get them every couple of years, it’s a concern. The next dr.’s visit I’m going to have to remember to ask for the urinary tract infection testing strips they use to see if I can use them at home.  I keep on forgetting to ask, and one of these days I’m going to think it’s just the fibro and I’ll have a raging UTI, and with all the meds I take I don’t want to do that to my poor abused kidneys! lol! It just keeps slipping my mind when I’m in with the Dr. I tend to remember when I’m sitting on the toilet thinking this is not so good…

It’s actually I’m discovering one of the biggest issues with fibromyalgia. Is that I assume everything and anything that I experience is fibro. Instead of thinking I have a cold, I have a bladder infection, I have the flu, etc. or anything and everything, instead I just chalk any and every kind of symptom to the fibro. It’s easy to let other things fly under the radar as just lumped as the fibromyalgia.  I just assume, and then don’t get anything checked out. I’ve had my Dr. remind me of it before… that I have to keep them updated as to changes and new symptoms, etc.  But, honestly, I see the dr. quite enough already, the last thing I need to do is catalog all the wonky things my body does to check it out. If I did that I’d be at the Dr.s every damn week!

The whole body slows down. My digestive system stops working too, IBS being another one of the fibro 5 add ons, lol. It’s predominantly the IBS that makes me nauseous I think, the combination of impaired digestion and a lot of pain. Thankfully ginger works fairly well for me for that most of the time, and helps with some of the inflammation too.

I just wish on days/weeks like this where I spend most of my time sitting in a recliner that I could do something more productive.  I’ve been carrying on with my year of giving and doing lots of online volunteerism, activism, and giving, but it doesn’t feel concrete online, it’s not something solid enough for me.  I grew up in a volunteering family. My parents in their 70’s still volunteer. Different areas and places over time, currently both for the hospital, and my mother also for hospice.

She was knitting and crocheting hats for chemo recipients and I thought about trying that, but I have a feeling with how sore my hands can get just with typing sometimes, that it would be slow going bits at a time.. and I’d have to learn first! lol. I wonder if there’s something else I can do sitting her that would feel more substantial to me.  Probably should stick to online stuff.

I may have to give up doing the BC BDSM site though, I’m not checking on event listings on Fet, so not really keeping it up. Maybe will see if I can get someone to help me with it, but I tend to like to do things myself, rather than delegate out.  It’s not much of a personal contribution if someone else is doing all the work for me.

Okay, enough rambling. Sore hands. Blogging though is good medicine.

XO