The week before…

This is the last week of my 30’s, I turn 40 next week. Its been a monumental spiritual growth year for me because of the big number I’m turning, I’ve changed what I will do in the future. Firstly, I’m leaving my past exactly where it is. No more reaching out to folks, I want very little of my time wasted on people who weren’t really friends/family with me to begin with. This was a problem I had, always being friendly accepting and chipper, no more. My ex husband is also banished to this mental behind the fence area, he hasn’t contacted his children in years and I’m done wasting any time thinking about him. Familiar BS, as in my family treating me like shit, no more. My intimate relationships are being held up to a higher standard too, I better see some good ole change or I’m out, tired of bullshit & promises broken. Sounds awful but I’ve actually freed myself from a lot of heartache doing this, this emotionally abused dirty doormat is done.

Rheumatology wise, I have gotten worse. Its been a gradual decline but I notice it. I am able to do less, have more pain and as a result more depression and anxiety because of the decline in my health. It wasnt an overnight omg things are worse kind of thing, just something I’ve noticed over the last year. I see other rheumies happily chatting about how many miles they ran today, all I can think about is how much my left hip hurts f I move any part of my body. If you are in the same situation as me you may have experienced blinding pain, where everything goes white and you yell because you can’t help it. That’s my hip, just one joint, brings me to tears. I really do wish I could move, movement is important to human beings and if you can’t get around something is lost, your psyche knows it.

My children are my joy, they do not understand how sick I am right now and that’s a good thing. They have time to figure out who/what they want to be. A quest in life that doesn’t need to be bogged down by worrying about Mom. They joy I have about watching and listening to them learn new things, new experiences, is priceless. Both are healthy, strong and focused. Most of all loving, what more could a parent want?

Hopes for a warm Autumn and less pain ~

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August quickie…

It truly hurts to know or hear of anyone suffering. There are hundreds of processes in the human body that need to work ‘just right’ for humans to be mobile, think, rest, heal, you name it. If you really think about it, its miraculous so many people are upright and moving. Screw with any of these natural processes and it can throw you off course and into the abyss. I miss abilities healthy people take for granted, I am adhd and hyper (before I got RA). These feelings still exist but I have to ignore them, its torture. My inherent self wants to be moving, all the time. I miss the motion of life and feeling like I could do it all, but that’s not possible anymore. A big part of me wants to boot people who can move but just sit stagnant in the ass just for being lazy.

Appreciate what you can do, kick the arse of folks who can, but don’t do. I’d gladly take your mobility.

Another brick in the wall?

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I forgot to mention, I’ve been slacking off of my meds lately and as a result friday I felt as though I was thrown into a brick wall. I also noticed something else the last 10 days or so, my appetite came back. I was actively seeking out food, BAD food, and put on a few lbs as a result. I’ll give it to ya auto-immune disease, one of the rarities where having an appetite is a bad sign of sorts. No appetite to me = meds are working, appetite = bad things going on because you’re not sick from the meds working? That make sense at all? I hope so. Wish I could fight this disease head on, because I’d beat it to death several times over just to be sure.

~Namaste

Baselines

Today I was told by a medical professional (not my rheumy, go figure) about baseline pain and truthfully I was not happy about it. MD explained it as such, that what I’m feeling right now and possibly forever, is my baseline mark for pain. Meaning pain, pain and more pain. If I didn’t take tramadol or naproxen I’d be extremely miserable with pain, that I may flare and feel even WORSE. Sometimes those 2 are not enough and I still experience break through pain and currently the RA forecast is tendonitis with a good chance of random joint pain. The appointment left me feeling discouraged and beaten, I don’t want to be in pain for the rest of my life, however long that may be. MD  mentioned a pain clinic and I cringed, I am very unwilling to give up my mmj, to be substituted by narcotics. That may not sound good but sometimes the mmj bridges me over a really bad time and I can escape the current reality of RA leaving its scar on me. I’ll go to the clinic and talk to them there just to see if they can offer me anything, but I think it’s ridiculous that I have to make a special appointment JUST for the pain.

I spend too much time wishing I was somewhere else other than my body.

May days

Well its been one heck of a week. My Enbrel was picked up (not by me), but the box wasn’t examined and when I went to grab one to warm up on friday, well, I was not a happy camper. My pharmacy gave me the ‘sureclick’ pens instead of the syringes. Now when I first started enbrel I thought sure! Those will be convenient. Then I actually used them… extremely painful and nerve jarring explains it pretty well. I asked my pharmacy to NEVER order those for me again. They caused extreme panic and anxiety and were very hard to take, the ‘bang’ they make is only the beginning. The auto injector takes maybe 10 seconds to inject what feels like ACID into your skin, it’s very hard to ‘warm them up’ and you cannot pinch the skin to gather up some cushy fat to lessen the pain. With the syringes I can warm them up easily in my hand and I can take as much time needed to push it in, usually at least 30 seconds so I can handle the burn better. Most of all they DO NOT bruise me for a month, I experience bad tissue damage & bruising if my body is abused in any way. I’ve noticed this inability to heal for some time now and watch any bruising I get cautiously, I’m terrified of a bruise necrocising. That brings on other problems I’d like to bloody well avoid. I cannot return or exchange the box of pens so Im in for a month of panic attacks or being bedridden because the fear of the pain/damage overwhelms me. I gave this pharmacy enough chances, they’ve lost my rx’s before and the only decent pharmacist left. Time to refill the xanex and change pharmacies.

It’s about time I no longer need to babysit the ‘professionals’

Oh my aching _____

My knees are giving me grief lately, walking is tough as bending them feels weird. It feels like a tensor bandage is wrapped around my knee (left) and I can’t fully bend or extend it. Right knee is joining in on the party too, ugh. I will say that Rheumatoid is about as predictable as Alberta weather, which is not very. Not being able to walk properly is pissing me off big time and I’ve found that car trips over an hour leave nothing left for the rest of the day. When you can do very little to begin with, anything else just makes it 10x harder to deal with. This year I’ll be looking into a scooter or chair of some kind, to see what features and how much it will cost so I can save up. The frustration of all this makes me angry alot of the time, when RA isin’t chewing on my body I’m usually a happy camper, full of shit and a jokester. Now I just do the best I can and smile even though I’m feeling like crap.

The week ahead

The last few days have been busy, I’ve had access to a car and have been shopping and doing errands. Well of course now Im paying for it. My left knee feels like it exploded, swollen, sore… ugh. Both ankles are angry too. This week will be a recoop for sure, staying off my feet as much as possible. Dr appt on Tuesday but thats it for my week. Back soon!

Darby, my bearded dragon!

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My new pet will keep me entertained đŸ™‚