I'm here. Sorry, so many of you have left such lovely messages, and I haven't been able to get back online to fill you in. It was a rough weekend, for all kinds of reasons and I just couldn't seem to get myself to sit here and think about the blog or anything else.
For those of you on FB, you'll have some idea of how Friday went. For others..it didn't go remotely how we hoped it would go. I don't have SLE. In fact, my rheumatologist at this point is not convinced that there is any auto-immune disease at all.
I have Fibromyalgia, and it is in an intense flare up, no question. I have a sero-negative arthritis, also acting up. My diabetes has complicated things and is contributing to my pain (something I didn't know it could do).
She didn't begin to hide her horror, however, at the treatment plan I have been on from my GP(well, 3 from the same clinic, as my main one is not always available). She thinks that they have panicked the first time my eyesight went, gone with the thought of a Giant Cell Arteritis and put me on a (in her words, ridiculously high, even for GCA) dose of steroids and simply left me there.
We won't even discuss her face when I told her about the 5 day taper a couple of months back. (I'd be interested in the letter/phone call my main GP will get over that one. I'm genuinely not sure he'll agree to continue treating me, which makes me sad, as despite what I've no doubt are some mistakes, he is the loveliest, most caring man who I believe was trying to stop me killing myself).
Anyway. I was shattered, in all honesty. I know it makes me sound just horrible, being upset when told I don't have a potentially serious, complicated disease like SLE. But a)it made a lot of sense to me - everything I read about SLE, all of the "My Story" descriptions etc, it was like reading exactly about myself. And as I had been lead to believe as early as October last year that my Drs were convinced this was auto-immune, of all of the AI possiblilities, this seemed the best fit.
So, first, that rug was pulled out from under me, when I thought we may just get lucky enough to get an answer and a treatment plan. But to be told it was a)NOT IE and probably mostly Fibromyaliga and a mis-management of steroids, I burst into tears. I'm not proud of my reaction, or my feelings for the 12 hours following (in my defense, my period was 2 weeks late and arrived the next day. I get to blame hormones at least a little). I felt like I was being told I was making it all up, making a mountain out of a molehill.
So many in the medical community dismiss FM as a 'made up' disease, or just what you call it when nothing else tests positive. They can dismiss FM patients (especially those like me, with a history of depression, although it's one I didn't have before I got sick) as hysterical and hypochondriacs. I can't tell you the number of times I've seen a Doctor or nurse hear the words "Fibromyalgia" and see an overweight/obese diabetic and have them switch off, not hearing another word.
I felt like that was where I was again. The fat girl who didnt' take her diabetes seriously and had the whiner's 'disease'. And I felt (as a kind friend pointed out to me) that this diagnosis didn't validate the amount of pain I am in, how incredibly my life has altered in the last 12 months. It doesn't sound serious enough to explain how a 35 year old woman can't put a bra on, or roll over in bed in the morning or hang out washing or sit for more than 20 minutes without hurting for the next 2 days.
It sounded like I'd been making it all up, or at the very least exaggerating it. And I'm not. I haven't. I've come onto the blog, and I know I've talked a lot in the past 6-10 months about how sick I'm feeling. But I haven't embellished. I've held back some of the more personal, embarrassing parts of this.
So I thought (and I realise how ridiculous it is for this to be in my head at that time) that I was going to come home and tell my Dad, and Joel's family and you what the Dr had said and everyone was going to roll their eyes in disgust and write me off as a hypochondriac. Even my father, who adores me and is agonised over the decline in my health in the past year, thinks fibromyalgia is a psych disease. That it means I just have a low pain thresh-hold.
The eye thing is kind of another story, one which the Doctors are all far more interested in (my focus, while I am concerned, of couse, about my eyes, is the big picture. To me it's all related, the pain, the stiffness, the inability to fight infection, the headaches, the vision loss, the other things..all of it is part of one big problem to me. Right now, ALL any of them are interested in discussing, even my Rheumatologist, is my eyes) is my vision loss.
Scans have shown massive macula oedema - a huge build up of fluid. They have shown that I am creating blood clots behind my retina, clots that should not be there. And they don't know why. One doctor thinks it's just the diabetes, and wants to inject medication into my eyes to reduce the swelling. Another thinks it's something called antiphospholipid syndrome, which is potentially much more serious, and which I am being tested for today. One wants me treating the eyes with steroids, one wants me banned from ever using steroids again.
I think (it wasn't clear at that point), once my blood tests come back, my Rheumatologist (who I think has placed herself in charge of the idiot pack), my GP and one of my Opthamologists (I don't know which one she'll decide to talk to. She said she would be seeking out the most senior one they have) will this week talk about my eyes, and what the hell do do with them. As it stands, I am officially one bar(number?) up from legally blind. My left eye doesn't see anything on the chart (no biggie- it hasn't worked since I was a little girl) and my right eye (which two years ago had better than normal/perfect vision) sees at 6/30. So what you can see at 30 metres, I can't see until 6 etc. No corrective lenses make a difference, and so far no medication has either. There was a slight deterioration over the week in my test results (that surprised me. I thought they were getting better, but perhaps I was just adjusting?).
So that's where I am. Embarrassed. Let down. And kind of confused. As far as my Rhuematoligist is concerned the plan is this. Rule out vasculitis and APLS. Spend the next 3-4 or 5 months getting me off the steroids.
And then we start again, see where we're at. It sounds like a sucky-way-too-long plan to me. But it's the plan. As far as she is concerned, the steroids have done so much damage, and would at this point be masking so much, that she can't do a thing until they are out of my system. And as the doses I'm on are so high, she wants the taper to be very, very slow.
That's all I've got. I'm more clear headed than I was (thank you Jenn, Avey, Em, Bec, Marg, Karen and Anna who were there for me at my worst on Friday night). Especially you Jenn, for being kind, but firm. While you're not my doctor, I think you're an amazing one, and on Friday, you were an amazing friend.
And thank you to everyone who has left messages for me over the past few days. I have read them. But it seems this has all caught up dreadfully with my darling husband and he has reached his limit, emotionally. He has taken a leave of absense from work and over the weekend, I watched him start to shut down. Sam called him on the phone yesterday, while he was out grocery shopping and when I got to the phone, my sweet man was sobbing in a carpark, all by himself. My heart is broken for this amazing man. So you'll understand why right now, he is where I will be concentrating. Pulling myself together and finding ways to keep this family ticking over.
We have lost our transport for Alexander to and from school, and have literally no idea where to find any. It is looking more and more and more like Samuel is on the Spectrum. My sons saw my Dad's wife (who suffers from dementia) have a meltdown and attack him (they've never seen it before) and Alexander is struggling to wrap his head around what happened, and his feelings about it.
My boys are in crisis and it's time for me to step back up to the plate. I'll be around. I'll be blogging. But I have to be stronger and better for them.
Thank you all for asking though. I'll update when I have something to update - when the blood tests come in, or when I see my GP on (probably) Friday.