July 2014

I have a lot on my mind lately. First I want to address comments made on the most recent post I did on depression. I have had chronic medication resistant depression since I was about 6. So that is around 35 years of me living/dealing with it as best I can. To make any suggestion that I have not tried everything possible to get relief is preposterous. Also to imply that a suggestion will change the way I think, to me anyway is amusing. The best part of me is that very thing, my willingness to be myself. Your suggestions will fall on deaf ears. I am and will always be, my own person.

In the rheum department, I am quite frazzled. I fight like hell to claim the physical part of my life back and it’s not getting any better. I was told if I kept at it I would see results. I do not improve. Just lose more little abilities as time goes by. I keep moving hoping for more gain, only to be gripped by cramps and pain. My right leg has an attitude of its own now. If by chance it slips off the bed I can no longer make it lift unless I use my arms to physically move it. Brain says rise and the command is outright ignored. What the heck is that about? I cannot lift my own freakin leg? Come on now.

I need help to go shopping. Lifting 2lbs of sugar is now (to me anyway) an Olympic event. Using a knife? Let’s just say I don’t cut my meat anymore. Getting up off a chair? Hardy har har. I love being outside, but now I am paranoid of the sun because of biologics. I don’t need cancer thrown into the mix as well. I avoid interacting as much as possible. It’s no longer in my power to listen to anyone talk about how sitting still all day would make them crazy. Or that a desk job would kill them. Gotta be productive after all. Meanwhile I am listening to how much my life is worth to other people. Even if they don’t realize it. I don’t go out shopping much. I find it makes my anxiety haywire. For fear of tripping over unsupervised children, sick people hacking all over, pushy rude adults, lunatic antivax’rs and drivers who are in a rush.

I don’t do much in my opinion. Things that I could do in under an hour now take much longer. Frustrating way to have to live. Listening to people who aren’t sick makes me feel as though I do even less. I don’t live. I exist. Rheumatoid Arthritis stole a big part of me. I don’t recognize what’s left.

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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. 🙂

a quickie…

I was thinking last night about the pit bull that attacked me 25 yrs ago, first thing that came to my head was. I’d rather go through that again than have Rheumatoid. I was shocked at my own internal honesty, the dog attack was more brutal on me mentally than the bite itself, it bit my thigh and held on, I screamed and punched it in the face. Lucky for me a boy on a bicycle, deliberately got the dogs attention away from me. He could ride his bike faster than the dog could run lol. I was however scarred mentally for many yrs, would avoid bully/ guarding breeds like the plague. 20 years later I was able to pet a pitty again :). Really sad that rheumatoid makes that experience look like a walk (crawl) in the park.

 

 

Bloggers note : I posted this blog with no intention of demonizing pit bulls or any other breed, I had a bad experience with 1 dog and completely blame the incompetent owner. 🙂

More bad than good, my ra experience so far…

      I think I’ve figured out why I never get relief from pain, I am in a constant flare state. Not good, but just another thing to contend with right? Lately Ive been seeing Ra friends having a tough time with all the bad this disease throws out, not feeling as if they can express it due to being negative. Negative expression is frowned upon by some and that makes it hard for others feeling not too peachy keen about all this shit were dealt, to hold it inside because you’re being a ‘downer’. I myself am in a not good place with all that right now, the pain and loss of mobility more often than not pisses me off. I hate what my body is doing to me & my mental health and worth. In other words dont let the happy ppl make you feel worse for not being happy living with a lifelong chronic disease! What you feel and your experience matter to all of us, having a bad time of it? Reach out as theres always others with similar feelings & most of all its OK to be real about RA, however you may feel.