Eventually there is an answer…

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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. :)

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’

Slumlords…

'Jerry rigged crap gate to keep our dogs in'

Warning, this is a big ole rant because it sucks being poor & chronically ill

May is finally here and (gimp fingers crossed) it shouldn’t snow anymore, at least until October anyway. Yesterday I found an article on people living in Alberta, Canada living on disability and how they get by, most don’t. Too many stories about people having to choose to eat or pay electric bill, quite a few go without eating and I am one of them. Disability was raised in 2011, but now it’s 2013 and the cost of living has skyrocketed since 2011. My rent was increased yesterday by a landlord who a) does not give a damn about the conditions of his property b) had no problem with known criminals living on his property and causing us the unfortunate next door peeps (we live in a duplex) extreme stress. I am VERY glad that the provincial sheriff stepped in and made him throw out the last bunch of crooks, because he would have let them live there until they were 3 months behind on rent. I’ve lived here since December of 2010 and up until this past February had to deal with psychotic drunks and drug dealing among other things on the other side of the wall from us. I stayed here through all that because moving was too much money and I cannot afford it, but now since our rent was increased I’m mad as hell, this is the thanks we get for scrounging to come up with rent every month. I can tell you Rick S, that there is a special place in hell for a slumlord like you, while you rotate on you thumb polishing your porshe suv deciding when you should go on vacation next, you make my family, my Mother especially, SICK. Here I am trying to make my house look nice and not slummy while asshole neighbours would fall over, drunk or high, on my flowerbeds and yard decor. We mow the grass, I’m not keen on 18″ high lawns, but you don’t care do you?? You are a true Piece of Shit Rick S, I’m not usually the sort for Schadenfreude but well, how much garbage is a person supposed to take? I’m glad you’ve lost MONTHS of rent due to your complete carelessness and all the court crap you have to pay for to get money out of the low life scum you had no problem with letting live here and causing problems 24/7. I have no pity or sympathy, you asked for it and Karma delivered and it will again. I’m on disability myself and see my standard of living dropping with each passing month, the utilities here are insanely high and eating healthy?? Not possible, and since I’m not a fan of crap/fast food I’d rather not eat and leave whats good for my daughter who still lives with me. I’ve had to ask her to chip in too even though I’d rather not, financial hell is what I’m in at the moment and I have no other choice than to downgrade pretty much anything I do, it’s easy to go up a standard of living but going down is a fresh new version of hell. I hate the tar sands and what it’s done to my city, I will more than likely be forced out of the city I’ve grown up in because of the damn oil fields and assholes looking to make a buck. Not all of us work in the oil industry and cannot afford the high cost of living like a rig pig can.

My featured image is our jerry rigged back gate, so we’re able to keep it closed and our dogs don’t get out!!

I am grateful my RA meds are covered, they’re my breakfast, lunch and dinner.

We were never warned about this…

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Was doing some thinking this weekend, and on Sunday I had a major meltdown because of overusing my noggin. I had been feeling depressed and stressed out from lack of sleep, pain & taking meds that nearly always make me feel nauseous. It all came to a head on the weekend, all of the loss I’d ever experienced came crashing in, it was too much. No one tells you when you’re young the amount of loss you will experience and that things will never stay the same and life is continually changing. No one prepares you for the challenges a chronic health issue that develops later on in life. Your friends and family step back, unsure of how to deal with your chronic illness and your near constant pain. Every once in a while, the disease, stress and nights of no sleep pile up and overwhelm you. I’m sure I’m not the only spoonie who experiences this :( In other words I had a good cry on Sunday, I needed it. I’ve also been dealing with depression because of my ‘bad genes’, I had my first child at 18 and my 2nd at 19. I was diagnosed with rheumatoid arthritis at 37 and of course I had no idea of this condition as a teenager. Lately my daughter has been complaining about her bad skin which I also had as a teenager but never thought my kids with experience such a bad case of it although it wasn’t as bad as I had experienced. Trust me that is something I would not have wanted passed down to my kids. The thought of them getting rheumatoid arthritis scares me to death, it is much much worse than acne. Even though right now a few zits feels like the end of the world, its nothing compared to RA and I pray to God that they never have to experience any autoimmune disease ever.

It’s strange to think that crying your eyes out could bring such release from stress. If you’re lucky enough to have somebody to talk to understand this disease, hold on to them. But if you need a good cry go ahead and do it, it purges the stress out of your body. Between the confusion, brain fog, pain and not knowing what’s going to hurt when you wake up each day, releasing that pain by crying is nothing to be ashamed about.

Here’s hoping that the warmer weather relieves some of your pain and brightens your day.

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

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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 :)