Connective Tissue Disease Things

After my last appointment with my rheumy I’ve learnt how to identify all three types of pain I have now. Arthritis, Fibromyalgia, Connective Tissue. Lately it’s been the ligaments, connective tissues, skin, and such that are painful. It’s particularly bad today. A 7-8 on the scale. I’ve managed to get myself and the kids dressed and fed, gone to the clinic and pharmacy. Rather proud of myself for that. Still have some grocery shopping to do and getting the boy child his haircut for impending kindergarten.

I’ve taken all the pain meds I can. I’m thinking I might need to take a dose of cyclobenzaprine. This would involve weaning immediately though and I’m undecided if I’m up for that. Fuck it hurts though.

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January 5th, 2017

Pain: 5-6

Energy: very low

Just a quick note. Things are stressful around here. Spouse was in an accident due to black ice a few days ago. Car is a write off. Money is tight. His anxiety and depression has sky rocketed which in turn triggers my anxiety. Little Man(my son) has been a wee bit more settled. Monkey(my new daughter) has been cluster feeding and cranky, wanting to be held most of the time. This does not help. Been eating better, sleeping better when possible. Bumped my Paxil.up from 40mg to 50mg. Been about four days, seems to be helping a wee bit. Will be back in my own room by the end of next week.

April 1st, 2016

I’ve been feeling awful, as my lack of posts usually indicates. I’m still feeling awful but answering a concerned email from a dear friend reminded me how therapeutic writing is. So I’m pretty much forcing myself to write this.

Spring is here, officially and otherwise, which means all sorts of pain for me. The fluctuating barometer and temperature means very stiff and painful joints. The pollen levels are also epic, ’tis the season of allergy meds and ventolin. I love this season but my body does not. Hands, forearms, elbows, shoulders, spine, hips, and right foot are all bad. Fibro is still flaring it’s ugly head. The stress is high.

Anxiety is running hot and hard, and in none of the good ways that can be thought up. Went from twenty to fourty mg’s of Paxil. Been smoking a lot of cigarettes which really does not help anything but old habits die hard when not well. Taking that one moment at a time right now. I’ve also been gorging on junkfood but not doing so well in the proper food department. Not drinking nearly enough water either. Note to self and all. I want to go mostly gluten free again and more vegetarian fare. Will be working on this.

I am bone tired. I want to go to the beach. I want to go camping.

Signing off for now.

1 February 2016

Fibro Pain: 8-9
Arthritis Pain: 5-6

Joints were only mildly cranky, mostly due to work. Fibro pain was bad today. A few light headed moments. Had a late walk and missed my bus, watched it drive by as I was painfully trying to book it up the stairs. I just about burst into tears. When I got up the last flight my wonderful hubby and the child were waiting for me to drive me home. SO happy to see them. My mid-spine is quite painful today. I’ve never been sure if that pain is FM or PA related. I discovered this evening that I have lost the ability to use a mortar and pestle. I know I can pick up an electric grinder for like $10 but it’s not about the ease of which I can replace using my hands; It’s about the fact it’s one more thing I’ve lost the ability to do with my hands. I am displeased but too tired and worn out to really get bent out of shape about it. I’m VERY slowly putting together a batch of banana-carrot-zucchini muffins, and by slowly I mean I started an hour ago. *silly face* They will be good when they are finally done. Hanging out with my son is great. I don’t get to see him nearly enough right now. Last week I did routine blood tests ordered by my rheumatologist. I think they are just to make sure all my organs are happy since I am generally on medication at all times. I’m supposed to get them done every six months but I haven’t gotten them done in about a year. My GP’s office called today to come in and talk about it, so I go do that tomorrow. I don’t think there is actually anything to worry about. My rheumatologist put me back on Plaquenil after I stopped it on the advice of my GP about 9 months ago. Said in my case it is more stressful on my body and worse for conception/pregnancy to be off than on. There have been rare cases of children born with some hearing loss. I’m back on it though and very happy about it. A few more weeks and I’ll start to feel some real difference in pain levels. New studies have also pointed to anti-inflammatories causing issues with egg implantation, rheumatoloist said it’s not anything to worry about with folks who get pregnant easily but since I do have issues with that we have taken off of any anti-inflammatory drugs.

I think that’s all the new info.

30 January 2016

I’m too tired to write out all the things I need to but wanted to check in. I’ve waited far too long to take my second dose of painkillers and my brain is mush. I know better than to push back drug times just because I’m feeling okay. Today was a rough day mentally. Physically I’m mostly exhausted. Except for the last hour where the pulse of pain throbbing along my nerves has steadily increased. I’ve realized I’m lumping all my pain together again so in the future I will be changing the format of my posts to clarify things a bit. The child needs to go to bed too, it’s actually past his bed time. I’m too sore and tired to move.

Fuck you Fibromyalgia. And fuck you shitty economy that forces me to work. And fuck you arthritis while I’m at it.

A lot of changes are coming. Hopefully it will all work out and I will feel a bit better and will have more time to write and such.

Much love. 💜🙏🏻

Life as of Now

My body is clear of ALL medications, minus acetemetophen and naproxen. I simultaneously feel amazing and on the verge of hospitalization; It’s been ten years since I hit an ER for any of my chronic conditions, I’d like to keep it that way. The nerve related pain in my neck/spine is literally vomit inducing. In the last 24 hours, the angry beast that is my digestive system, has once again reared it’s ugly head. Granted the last few days have been particularly stressful, the little one fell seriously ill. What that did though was give me something to focus on. While I’m sitting at 11-12/10 pain levels I am pleased. My writing brain is firing up again. My anxiety is there but manageable. I have lots of thinky thoughts to write down. Will write as I am able, thus neck thing is pretty all consuming. It’s the kind of pain that actually knocks me out. I had a good half hour of blackness this afternoon. It’s not unconsciousness but I think it’s pretty damn close. There will be trips to the chiropractor, I’m terrified. I can’t even explain how much it hurts to have my neck adjusted. I know it needs it though. I’ve heard the indicating “crunch” of the vertebrae in question a couple times in the last few months. I will be working on getting a new GP and getting the issue looked into. It’s the site of my first real major industry. I was in a rear end car accident around the age of 11-12. Some pretty serious whip lash. So yeah good times. 

Supplements 

I’ve been falling dreadfully behind on taking my supplements. After many months of not taking anything outside of prescribed medication, I had been trying to get back into the habit of it. It’s of particular importance now that I am off ALL medication outside of daily Tylenol 3’s and Cyclobenzaprine.

The List

  • Multivitamin; women’s maternity variety for the extra folic acid and because we are trying for another child.
  • Calcium
  • Fish Oil
  • Probiotic 
  • Antioxidant(it’s not a regular supplement, it came with some of the others)
  • Magnesium
  • Turmeric and Curcumin

The turmeric combo I just bought today, so it may be some time before I notice anything.