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

5 years & holiday reminder

I can’t believe it’s been five years since I first signed onto WordPress!

With the holidays coming up I wanted to offer support for anyone who deals with a chronic disease. December is brutal, too often when we are told to enjoy what we have. More often than not we’re reminded of what we don’t have. Our health is a biggie here, missing family and friends who are no longer living is another. Some families just don’t get along too. Add all of that on top of media/society pressure to have the perfect Christmas, to spend money you don’t have and there’s a recipe for a crushing disappointment.

I’m at a point in life where the people make the holiday for me. My kids especially. I refuse to be pressured and I let folks know if they’re headed that way. I use to bake tons and went all out with cheesy Christmas decorating. Now it’s a much simpler approach, the easier the better. For so many years I made the holiday, now I want to just enjoy the moment.

If you are chronically ill, sick and in pain, cut yourself some slack. It’s stressful for people who aren’t sick. Rest often, if help is offered take it. I cannot shop alone anymore, bags get heavy fast.

Think about the meaning more than the money.

Do something you enjoy if your heart is hurting.

Most of all be gentle on yourself.

Happy holidays

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RIP Mandy 2002-2015

Posted from WordPress for Android

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.

Posted from WordPress for Android

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.

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.

Truly the best medicine…

Yesterday was a voyage into hell, it felt like my legs had taken a shot-gun blast to them. I relented and took tramadol because the pain was difficult to hide, you know it’s bad when you cannot conceal it. The pain was relieved to a bearable level and managed to go out for a drive to a local park for some people watching. A little boy had his cat on a leash, have to say it was amusing because, well, it was a cat on a leash. 😀 Kitty did not cooperate and wanted to do his own thing (of course) its tail was flicking all over the place and the area is au naturel parkland with trees, birds, grass and plenty of room and that 6 ft leash did not cut it. The little boy was patient and tried to lead kitty back to their vehicle, it took awhile to get in that general direction. We were giggling and a couple of women walking up the path were too, what can I say, cat on a leash. 😀

It’s very important to get out and laugh, it felt damn good.

See you in September 🙂