Ugh. That is the word of the day. It’s hot, we are having a heat wave this weekend. Highs in the 30C area, at night it’s about 15-20C. Wreaks havoc with my chronic illness. The kids had a rough week, the older is still having sleeping/eating/meltdown issues as well as teething (he lost his first tooth and the adult tooth replacing it is coming in fast), the younger is teething and growing so eating and waking a lot. My Mom brought me her old mobility scooter now that we’ve moved and have the space to store it, that’s been very helpful. It helped me get out to see her yesterday for her birthday. It’s now been a week since my surgery, healing is slow as I expected it to be (there’s a whole post in the works for that). I’m having issues getting up and down the stairs today. We got a good walk in though to loosen things up. There is a family gathering tonight that I completely forgot about that we aren’t going to. This has upset people greatly. I hate how taking care of myself leads to unhappiness and disappointment in others, let alone myself. I’m enjoying the time with my husband and kids today but I’m really unhappy about people being unhappy with me for taking care of myself. Well they aren’t unhappy with me personally, at least I hope not. Just sad about the situation. Thing is this same person gives me crap for not getting enough rest and self care and whatnot. Just feels like I can’t make anyone happy, least of all myself.
I’m seriously considering medication for depression again. Probably Wellbutrin since it will help with the smoking. I also need something for my Fibromyalgia, and need to discuss my worsening joint pain and such. My rheumatologist moved my May appointment to August. It will be almost a year between appointments. I am not pleased with my current quality of care. I can’t even find a family doctor close to my new home, I don’t think finding a new rheumatologist is going to be any easier. I need a vacation from life or something.
This is a documentation post. I need to remember to show these photos to the doctor. Or well not the photos but the corresponding spots on my head.
The spots that I thought were mild psoriasis may actually eczema on my scalp. I’m hoping to get a picture of the spot on my ankle and my forehead when they flare up again. The red patches don’t show up well at all but there are discoloured bits in the photo at least. The thinning a bit above each temple is getting worse. It’s starting to remind me of male pattern baldness. I’m shedding a lot of hair right now but I assume that is post pregnancy things.
The first few pictures have a bit of the scaling/flakes.
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.
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. 💜🙏🏻
I’m back from one of my usual breaks. No matter how hard I try I can’t seem to write EVERY day and stop for months at a time in a pretty regular cycle. My most recent discovery is that really warm weather makes me really sore, the high pressure doesn’t get along with my joints. Still not as bad as when the weather turns crappy like it has been the last few weeks. LOTS of rain, seems Mother Nature is making up for the dry summer. With the cooler temperatures the pain and stiffness, particularly in my hips, feet, shoulders and hands. Certain joints in my feet have been giving me grief. The Raynaud’s Phenomena in my feet has gotten steadily worse, my toes are pretty much icicles all the time now. Drives me bonkers, I hate it. The cooler weather has also woken up the pain in my upper back, so I’ve been feeling pretty sore and tired and frustrated. There’s been no change in medication or anything like that. My body has almost completely reverted to it’s super food sensitive state. In December I will be going back to see my Rheumatologist, so I’m looking forward to that. Psoriasis is getting more noticeable on my scalp and eyebrows, still very mild though all and all.
Things have been busy. The Little Man is walking and getting into everything. It’s also summer which means camping trips and such. I was feeling really good with all this heat. I did my best not to complain because it got REALLY hot REALLY fast. Something has gone funny under the surface though. It’s still warm but things feel broken again. I am seriously thinking about investing in a barometre so I get some warning at least. The burning pain of the infamous “T-Zone” has been mild. Hands/wrists, hips, ankles and feet have been bad. The second joint of my right big toe, the Medial Cuneiform, hurts A LOT and makes walking an interesting adventure…here’s a picture:
My shoulders have been pretty bad this week too. My right one is particularly pissed off, I did something to it picking up the boychild last night. I’ve been experimenting with only taking my afternoon dose of Lyrica if I feel crappy. Not sure of that’s affecting how sore I’ve been lately or not. Either way, it sucks. The Psoriasis on my head is getting pretty bad, I can actually see the red scaly spots now.