End of summer 2015

It’s been a heck of a year so far. Recently I noticed that I can no longer stand on my right leg on its own. It gives out. I’m having to modify how I walk and move again, also stopping yet more activities. I’m not managing disease progression well, I get use to how things are then they change again. Pain levels are getting higher too. I’m not feelin this.

Went to a farmers market today and nearly tripped backwards over someones loose toddler. Yesterday it was a 3 seater stroller & loose baby. I’m becoming all too aware why you don’t see lots of disabled folks out and about. The world is a minefield of disasters that are nearly missed. Also, turning babies and toddlers loose in a crowded area is rude and thoughtless. Why should I have to watch out for unsupervised children? I told one woman off yesterday, you can’t watch your kids. Keep them home!

Between that and just rude people in general I stay home most times. I’m intolerant of the ignorance of others and tend to say something. Tired of the stupid looks and staring. I’m disabled, get over it.

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Looking back.

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I have wanted to write about or more fittingly ‘purge’ some feelings I dealt with last year waiting for enbrel to work. I’ll start off with some history first. I started the biologic medication enbrel January of 2013, as we’ve all been told and I expected, it can take 3 months to start to work. March came and left and I still felt no different, my rheumy and I gave it more time. Because lets face it, there’s not an endless bunch of biologics to try and each one should be given the chance to work. June came and went and still nothing. By the time summer came around I was in excruciating pain. I had a hell of a hard time dealing with it, my rheumy would only prescribe naproxen and that pain-killer did a whole lot of sweet tweet all and in my opinion was useless for my pain. Most times I felt like I was being ripped apart from the inside. It was HELL. Laying in bed twisting around in pain nearly losing my mind. Pain on that level I swear turns a human being into a primal monster who only wants it to stop. My fear and anxiety skyrocketed and my instinct to protect myself overwhelmed me. A wounded bear backed into a corner describes in a nutshell how I felt. At that time all I felt was pain, I was not myself at all and I was desperate for relief. Marijuana didn’t help as much as it usually did and I may as well have taken tic tacs instead of ibuprofen, naproxen or Tylenol. I at that moment considered something horrific and at that time it seemed completely rational. I was going to ask my man to see if he could find Heroin, anywhere. I was desperate, screaming and crying in my bed, just wanting the pain to stop. I had no other option in my mind, Dr’s ignored my pleas for pain relief. I was treated like a drug seeker in the ER. My RA was brushed off and I was left to deal with it on my own. You know you’ve hit a low point in your life when you even consider that poison as ‘relief’. I did not want to get high, I needed the pain to stop, now. It never went beyond that request thankfully, afterwards I was alarmed that my mind even went there, but the effects of pain cause irrational thoughts. This I learned only by experiencing it. I got through that moment by smoking a lot of marijuana that particular night, to the point where I passed out. Thankfully.

My enbrel finally started to work in September of last year. My other Dr started me on cymbalta to help with the pain in September also. I was taking tramadol for pain before cymbalta but it was not working as well by then. I still feel pain even with these meds ‘working’. RA really frustrates me because it is not predictable and you cannot plan around it. I never know what each day will bring.

Recently I viewed a story on CNN, where they reported that many heroin users started using that drug for pain relief. My heart sank because I knew why those poor folks had seeked it out. I do not judge them, I feel for them. That is no place a human ever wants to be. Your instincts for self-preservation take over, the pain is your master not you.

It is my deepest hope and wish that some pharmaceutical company creates a pain-killer that works without the addictive side effects of opiates. We all deserve pain relief without the cost to our souls.

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. 🙂

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’

Bothersome happenings

It took awhile but after some time and awareness of an issue starting. Choking, on anything and everything. I have to be cautious and be sure I’m either at a 90· angle or less, as in leaning over my plate, bowl or what have you. It happens alarmingly often and I’m scared to ask a Dr about it, I don’t want to know the answer really. The thought of adding ‘something else’ to my list of illnesses TERRIFIES me. So for the time being I’m keeping my chokehole closed. Plz no ‘go to the dr’ comments.

A handful of xanex couldn’t get me in there.