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

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The Watcher…

Ever feel like you’re watching everyone else live their lives? My life whether I like it or not revolves around how I’m feeling and what I can do on any given day. I have a few friends who are getting married, expecting children or planning on family shortly. I am on the cusp of middle age, don’t plan on getting married again, I’m no ring chaser, it’s not for me. It just seems like everyone is doing SOMETHING. I have to admit I envy the family my friends seem to have hit the jackpot on, lots of people seem close and connected, I never feel that way with my family. I would love to have the freedom to make plans perhaps have another child, travel and go out, but realistically it’s just not possible. I use to be the kind of person who made plans months in advance and a had at least 3 trips per year planned out ahead of time. Everyday was a new adventure without limits. It’s kinda cool that many people nowadays find love, family and companionship at an older age, a few years ago it was common to think that anyone over 40 was screwed and would never get married if they haven’t yet. One old stereotype I will not miss!

The 40 or f**k it list…

This year will be a big one for me, I turn 40 in the fall. I’ve decided to tie up any loose ends of my life before the big 4-0. A few of those things were, reaching out to old friends for the last time, most of them I’ve learned never were my friends really. I will not seek them out again after 40. Another one was hopefully, fingers crossed, was my families commitment to not treating me like shit anymore, eg; bringing up some humiliating experience when I was a kid, talking about me like I was stupid, treating me as if I wasn’t family or looking at me like something was wrong with me. Didn’t happen, so in future any mention of my youth by them will be met with the sheer force of my fluent mouth and a bitch slap with my verbage. Other things like getting out of debt are on my f**k it list too. But the family one was most important, I will not be treated like shit anymore by any of them, I wasn’t included in many family get togethers in my younger yrs and they’re ok with that. So I will be ok refusing to be hurt & stressed by the joke of it all. Also on the list is my ex-husband, this is the year I stop asking my kids if he’s made any sort of contact with them, his problem now. I will not mention or ask about him again, he shit in his own nest.

The f**k it list is all about laying the past to rest and moving forward onto new things, I dont have the health or time for any of it. It’s like a big ole sweep out of the brain. That part of my life is over and I need to start the next 40 with fresh eyes and an open heart. It just seemed important for me, I want to be free of any baggage & free to learn new things and ways of doing them.

This was the year I hoped for a breakthrough with my rheumy, not for a cure, just for acknowledgement of my pain & fatigue. My bloodwork is good with numbers in the normal range, (currently taking enbrel) but I am effin EXHAUSTED all the time. I was very disappointed when my rheumy blamed it on fibro and again refused my request for stronger pain meds. I am now discussing with me, myself and I if I should look into a new rheumy.

This year is going to be a doozey.

Eventually there is an answer…

I’ve wanted to talk about how life can spin you around and leave you in wonder. I had both of my kids young, was a parent of 2 by the time I was 20. At the time back then I was young, frazzled and didn’t know my arse from my elbow. I was a stay at home Mom, my husband worked a lot. I can remember those days of raccoon eyes, getting up early making 3 meals a day, most days anyway. My son developed bad asthma @ 4 yrs old and required quite a few trips to the ER in the middle of the night when the nebulizer & inhaler didn’t cut the mustard. In those days while doing dishes, cooking or cleaning I would ask God, I know there’s a reason I’m going through this so young and I hope one day you’ll share with me why. It was a tough time, never enough money, 2 bickering siblings (trust me they love each other) and the work never ended. If I needed groceries I had to walk and take 2 little children with me, the toy wagon earned its keep for pulling tired kids home whilst I was carried groceries. I walked everywhere, taking the kids to the park and then school etc. I had energy to burn and thought it would be that way for me until old age, I still didn’t have my answer. Time keeps going on no matter how much you’d like to slow it down, after an affair and yrs of trying to get past it, it was divorce time. It was what I needed to do to have a chance at a happy life, I tried my damnedest but 6 yrs post affair I was still miserable. I thought of suicide nightly, when the person laying next to you in bed is colder than a stranger to you, things need to change. I was terrified, scared shitless you name it but I made a choice and that was to live even if that meant poverty. I was fully motivated to go back to school and get a decent job that would have made me happy, being a health care aide of all things. My ex husband helped out with finances in the beginning but eventually cut back what he contributed, on advice of the ‘other woman’ I’m sure. Yup, that’s right 6 yrs after the dumb move that tanked my marriage he went and found that gutter trash again, just to hurt me and ended up in a relationship with her. I feel no sympathy for either, she ruined her marriage and mine, sucks to be you doesn’t it? My kids FATHER and I use that term loosely, has not contacted either of them in 2 yrs, birthdays, Xmas, nothing. It makes me sick to even think of it and I feel guilty for ever letting him reproduce with me, just goes to show after 17 yrs together I didn’t know him at all. It’s a part of my life I don’t miss at all but I do feel for my kids who do not deserve to be treated that way. I have enough love for them both. There are no excuses, both have their own phones and their ph #’s have not changed, but he can’t dial I guess. Anyways enough with that it was 5 yrs ago when I asked for the separation and got on with my life. I entered a gov’t program to learn career and life skills for abused women, for me it was emotional abuse others in the class had experienced different kinds of abuse from men. I was excited and determined to enjoy the rest of my life. For those who are not familiar, our provincial gov’t will provide financial support as long as you are going to your courses. Well with any high concentration of people there’s going to be germ parties and I noticed some of the girls would come in sick, no biggie I thought, just be neurotic about washing my hands etc. Unfortunately strep doesn’t listen to clean hands and I ended up with a nasty infection and was only able to get 1 day off of class, any more days and I would be cut off financially. So back to school I went because well lets face it, I have 2 kids at home and being cut off financially is just not Ok in that situation. I took a 2 week course of antibiotics and thought the worst was over.  Wrongo! I ended up getting sick again as the other ladies in the course kept coming in sick too for the same reason, we all had kids and being cut off was NOT an option. This time the infection was on the right side of my face, that’s right the whole side of my face was a microbe party, the infection eventually ruptured through my ear canal from the pressure the infection caused. There was no where for it to escape. I tell you what though, if you go into a medical clinic and tell them blood is coming out of your ear, you will get seen very fast by a Dr. Another round of antibiotics for me, strong ones too, and yet I still had to go to school under the same threat, come or you’ll be cut off. I kept going to school with my head pounding from the pressure of the infection and ended up making quite the scene with my ‘worker’.  In a nutshell I called them a bunch of assholes for making me come in this ill and for making anyone who was sick come in. I was then labelled unpredictable and aggressive for telling them the truth and not putting up with their bullshit. I kept up as long as I could but was never the same after the 2nd infection. I didn’t understand why I didn’t ‘feel better’ like I did before. My energetic self had become extremely lethargic & fatigued. My boyfriend at the time made this comment during my 2nd infection while I lay in bed with my head screaming if I moved it, ‘are you just going to lay in bed all day?’ my response was… why yes I am, the relationship ended shortly thereafter, I have never met anyone as unsympathetic as him. I was burned out after it all and silly me thought if I rested I would eventually get well. Nope, and there in 2009 when my kids were 17 & 16 I began my quest to find out what was wrong with me and in 2011 I got my answer, to both questions, the one where I asked God why I was a young parent and also why I never felt the same again…. When I got sick both kids were old enough to do for themselves and basically only required occasional guidance. Now I know why I had them young, because parenthood would have probably been denied to me as I got too sick to do much of anything anymore after the disease process began, and I’m very grateful for them, they are my rocks, my sunshine and my joy.

Next week I’m participating in a round table about Rheumatoid Arthritis, where I can bare my soul. Hope to be back blogging here the week after. 🙂

Sometimes you gotta…

I told my physical health to F**K OFF yesterday because I felt somewhat normal, my mental health needed me to move and I did, got some of the housework done. Because you spend a lot of time with your mental side when the physical pain stops the body. After a while your head can get kind of abusive towards yourself, you should be doing that! Why can’t you do this? It’s like a complete separation between what the disease does and what your mind thinks, is it because our eyes cant see it? or because we feel it and we’re ignored and discounted by most? I and surely most folks were taught to not be lazy and get things done, it’s not a bad thing really unless you end up with AI disease. Then your stuck on that mindset and your body is stopped in its tracks, the two don’t jive really. Anyways I was having a hard time with my thoughts lately and pain that won’t simmer down. Then yesterday I had one of those few days when you wake up and feel ‘different’ and that difference is you feel like a person again opposed to a tortured voodoo doll. I jumped on it, tidied the livingroom, rec room, loaded dishwasher and did and folded 4 huge loads of laundry! I knew I’d pay for it later but didn’t care, I feel good and happy with myself again. I know I shouldnt feel guilty about not being able to, but I’m too much like my Mom 🙂 Woke up with pain at a 3 that morning by evening it was a 5 and that’s a good day for a rheumy.

Tendonitis

Havn’t written in a while, have been trying to get a hold of the pain & fatigue. lately I could sleep all day if I wanted to, even though I know it’s a bad idea and I make myself get up at some point. Its been like this for three days now, no idea why I could sleep the day away so easily. The non stop pain I do understand, I can see the changes in my hand, the shape of my knuckles & fingers that are askew, most of my other joints are affected as well. Having your bones eaten away from the inside would cause significant amounts of pain I would think. And I know. A few weeks ago I was in the er in extreme pain, to my relief it wasnt appendicitis and I didn’t need to be cut open immune suppressed and all. Did come to find out it was tendonitis, you know the injuries athletes get? You don’t need to be an athlete to get tendonitis, us rheumies get to partake in pain usually known to hardcore athletes. It’s not really fair Is It, consIderIng most of us can’t get around that well and If we do we end up paying for It later, I really wish I could move like that. I also got that well-known look from the er doctor when I asked for pain relief :(. I’ve come to find out that tendonitis is very painful and I only had it in the one tendon at the time in the hip area and I thought my hip had popped out! Since then I’ve had tendonitis in a few tendons in my legs and when I have it I can’t keep my leg straight, can’t bend them without pain and I end up having to move them even though it hurts because it hurts not moving them. I hope that makes sense. My biggest concern for the moment is pain relief, I will have to look for a more compassionate Dr to listen to me. Here in my province Alberta a new generic Oxycontin extended release tablets have been approved for coverage, the extended release form is to help prevent abuse of this drug, also making it more difficult to abuse. I have no intentions of abusing and extended release tablets are fine with me, this was also put in place to make it easier for people who need it for legitimate pain relief. Hoping my next visit is productive pain wise 🙂

Pred, pred go away…

Tapering off of prednisone right now, pred is one of those meds that helps you up one minute and backhands you the next. I can feel the pain coming back, sore tendons returning, BAH!! The first week or so starting at 20mg was wonderful I could rest, got things done. Now for the rage, tiredness & pain that comes from roid withdrawal. It was that bad, to be willing to take pred for any kind of relief. Now the price is being paid, we all need a cure, its insanity that we’re told to ‘deal with it’ or our pain is ignored. If it was a different disease the mere suggestion that we don’t need pain relief or treatment would be considered inhumane!! Thinking of all those with negligible pain treatment today.