Spring 2014

   I definately have trouble writing much. I don’t want to be too depressing or real but BS and pissing rainbows is not happening either. I started cymbalta last November and experienced some much needed relief from pain. This one side effect is being annoying for me though, weight gain. I had lost 60 lbs over the previous year and a half before taking cymbalta and far to quickly after starting I gained back 25 lbs. I don’t feel I eat more than I did but it came from somewhere. Have to cut back even more to lose it again. Ugh.

Bloodwork in March showed my inflamation levels have dropped to normal levels. Great news. 15 months of enbrel, 2 yrs of mtx/plaquinil/sulfa did something anyway. Still feel like I was hit by a dump truck most days, why is fatigue still such a huge problem for us with AI disease, why do treatments not relieve this? Things I’d like to know.

The RA still lurks. It’s working its way down my right leg, started at my hip months ago. There’s nothing I can do but lay here and notice it. That pisses me off.

I miss biking.

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No more blog in forseeable future.

I am finding it harder to write. I really expected to have improved since March of ’09 when I first started feeling symptoms, but I have not. I can do less and less as time goes on. My family and friends are non-existant and being stuck in this piece of shit useless body has stripped me of any hope & self worth I use to posess. I am not a writer by any means and have no usable skills with this bitch illness. All the things I use to enjoy and was good at were physical, now there is just nothing. I exist, that is all.

Take care and I hope your luck is better than mine.

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.

Happy 2014?

I made it through the holidays, barely. Here I was thinking I could do what I wanted but rheumatoid disease proved otherwise. Christmas shopping I managed 10 minutes, then I had to text my daughter to come help me. I was grateful she came with me, I couldn’t carry my bags and heading to the other end of the mall was a lot tougher than I imagined. Taking breaks and spacing out what I needed to do for the holidays didn’t help. December 21-30 was a bust, I was in pain and of course what I had for painkillers didn’t touch it at all. I felt so disapointed, in myself, for my kids, I tried my hardest to do it right, rheumy style and failed miserably. My son stayed over a few days and I had to take breaks during his visit to lay down for a bit, and went to bed early each night he was here. This was not what I was hoping for, to spend as much time awake/moving as I could to enjoy his visit. I ended up feeling like a failure. I am quite sure my kids didn’t feel that way towards me but I felt it and that’s bad enough. I finally felt okay after a few days of doing nothing on the 30th. Laundry got done that day.

Tendonitis has been bothering me these days, feet and hands mostly. I can feel the tightening of my tendons, muscles. It feels like pulling almost to the point of cramping. Rubbing them is all that helps. I freakin ache a bunch, it’s annoying more than anything. I move as much as I am able to without hurting myself. I would move more if I could.

The holidays are exhausting and then if your children have their own home they go back to, they leave. There’s such an emotional let down after all the celebrating, you ask yourself. Are you sadistic? Between doing all I could for a good holiday and the emotional punch in the gut after… I am nuts.

I hope your holidays were good but if you were let down by your own body, you’re not alone.

Happy December.

Today I heard great news from my Rheumatologist, he said I’m doing great and will be even better as times goes by. I really couldn’t ask for better news. Today was the first time I left his office with a big ole smile on my face, I am genuinely happy. My next appt is in Sept 2014, 9 months from now. I got my scripts renewed for a year and no longer depend on tramadol or naproxen to make it through the week. I weaned myself off of tramadol in October of this year, it was one med that wasn’t covered and if I didn’t need it no sense in paying money I don’t have for it. A great deal of credit goes to my psych Dr who in a moment of brillance prescribed me cymbalta, it has been a lifesaver. My pain was reduced greatly from cymbalta, so much so my need for painkillers was reduced greatly and no patient with rheum disease could say no to one or two less medications to have to choke down everyday. I still take naproxen sometimes, but only as needed and not automatically added to my pillbox for the week.

I have been incredibly lucky, I am well aware of it. Between symptoms, diagnosis and the first treatments I took, the road looked long and grey. Through it all I had presciption coverage and disability benefits to ease the burden of disease, I know not all are that fortunate. I am most grateful for the coverage of very expensive biologics. It would be impossible for me to dream of having a mobile life without them. I’m not back to the life before RA point yet and I am not sure if I will ever get back to how I felt before disease, better than I was is my big goal now. Going from 1-2 good days a week in January to 5-6 good days now is substansial. The feeling I have along with it is monumental. My spirit is not nearly so crushed, my fear of passing away soon has eased. I can think of the future again.

I wish you hope this holiday season. Hold onto hope with every bit of your being.

Blessings.

Your strength.

Good day eh. Living with chronic illness is tough but time and pain has taught me much about patience. Before being diagnosed with Rheumatoid Arthritis I always expected a quick fix to any ailment I had. After diagnosis I quickly found out that the medications for RA do not work fast at all and can take months to show any positive effects. I have over time learned that with supplements too and also what I eat. Before getting ill I loved my food, ate lots of carbs and other crap, didn’t care about my weight or if what I was eating was making me feel gross with GI issues. But since losing my appetite for the most part I make sure to (most of the time) to put good fuel in for my body to use. It has made a difference in how I feel overall and empowers me in a sense that I’m helping my body do the best it can. Chronic disease can make you feel weak and powerless, no known cause or cure, what ifs and should have dones. Dumping most of the junk and greasy food did nothing but help me out. The fact that RA is linked to heart disease makes it easier to choose healthy foods.

Depression is another ghost that haunts me ceaselessly, that is a ongoing battle here. I was depressed before RA, afterwards when the disease started taking its toll is when I really got lost in my own thoughts. Uncertainty along with pain, heavy duty meds and the rampant misconceptions about RA can put the toughest soul on edge. I sometimes wonder if people are judging me because of depression when there is nothing I can really do about it, I take what’s prescribed for my depression and have tried any new medications that became available. I have been asked if I was diagnosed properly,  I’m pretty sure what I’ve been dealing with since the age of seven is depression and unless you’re a Dr or other professional don’t bother wondering. This is the reason I keep to myself most of the time, I refuse to be patronized and am smarter than most realize.

If I’m not online that is a good thing, I would much rather be busy doing something other than on the net. I find it boring as hell now and mostly pop on to see my wonderful supportive friends and how they are doing. I love all of them ♥.

Cheers!