Back for some old and new.

I have not written about my rheumatoid arthritis in a while because it has not improved. But I can say what it has made worse. My depression. As my physical health goes down hill my mental health follows. I’ve been called all kinds of names but in reality those same people couldn’t handle a week of my life physically, never mind the mental anguish that accompanies it. Being depressed is a lonely road. If people have not experienced it it’s very hard to understand the darkness. My old coping mechanism for depression was going outside. For a walk, fishing, birdwatching even to the store, just to distract myself a bit. It usually worked and kept the worst of it at bay. I’ve lost that remedy for the blues.

I have also learned these last seven years how important it is to have a purpose. I don’t mean a career by that. By a certain point the pain and disability makes a career difficult. A purpose is something different in my view. It’s more of a ‘I’m needed’ feeling. 

When you lose your physical abilities you really start to ponder your ‘purpose’. What do I do now? Where do I go from here? I’m at that place right now and it’s not easy. No part of RA, depression or any illness is easy, but no one mentions side effects like your mental health taking a dive.

My youngest moved out on her own this spring so I have that empty nester thing going on too.

If you are diagnosed with an illness do consider care for your mental health as well. It can be a tough road and just having someone to unload onto who is unbiased can help immensely. 

I’ll be adding more views on depression in the future. 

Enjoy the summer

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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2015

I haven’t been writing much obviously. But a few things this past holiday season made a-ha moment in my brain. If you ever have the chance (or misfortune in my case) to hear a random bunch of people talk about what they REALLY think about the sick and chronically ill. In this instance they didn’t know I have RA/fibro. You really get a disgusting eye opener. I had no idea that my life was such a crushing tax burden on the world. How the sick have ‘lots of resources’ and how the gov’t will pay for everything the sick need.

BULLSHIT.

It’s people like you who are the reason I try to desguise my limp and make no mention of being on disability. Let alone the shitload of poison meds I take to try to control it. The medications fuck up other parts of my body by the way. Not just my RA. There was no issue with the gov’t taxing my ass off when I was well. So go fornicate yourselves and leave the sick alone.

No one who’s chronically ill WANTS to be.

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.

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!