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.
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.
I have to admit, my mental health has suffered greatly since my diagnosis of Rheumatoid Arthritis. I had battled depression & anxiety before I was diagnosed and now, well, it’s a lot worse. I have terrible bouts of hopelessness and feeling useless to the world which is now my reality. My son moved out May of ’12, I still sometimes feel that loss, I know kids can’t live at home forever but I was hoping for a little longer. My kids are/were my world and them growing up is another challenge I face in this life. It’s not easy to be a parent, kids change your life the moment you have them and it’s a constant evolution as they grow. That being said I don’t handle change well and I consider that a huge flaw in myself, it needs constant work. It honestly feels like I need to become someone completely different, am now a chronically ill mum bordering on empty nester. My daughter still lives with me and I enjoy all the time I can have with her, I know it will be hard when she decides to leave the nest. I hope between now and then I have better coping skills. As you could see by my last couple posts I’m not faring well on the mental health front, I do try my damnedest to not sink so low, it’s my mid-life crisis I guess, enhanced by RA & me feeling pretty useless compared to what I use to do. I took great pride in fixing and doing things on my own, I was self sufficient and tenacious, I got shit done. I feel like a shadow of my former self, I still get stuff done but not as much as I use to. And that irritates the hell out of me. Between being sick, fatigued and brain fogged to the point I forget as quick as the thought entered my head. I end up getting up from my chair and as soon as I stand up I forget why I stood up to begin with. I have to think hard on what I was going to do, it usually comes, eventually.
Mental illness still has plenty of stigma, when I was a teenager terms like anxiety/panic and depression did not exist. There was just something wrong with you and parents, medical professionals, teachers made sure you knew that. It was brutal going to school with these problems haunting me and no one cared, just got labelled as ‘off’ or ‘screwed up’ or my personal favourite, weird. When I got older and had kids it really spiralled out of control, hormones only exasperate mental illness. I finally at 21 yo got to see a mental health professional who helped me understand it was a disease and not a personality flaw. Most people don’t share their mental health issues and I know why, your ‘friends’ will make comments behind your back about how you’re fucked up in the head, if you havent experienced it you just don’t understand. I pray to God to relieve me of this burden that makes me break down so often, it is a disease and so far the meds available have not helped me much or turned me completely psycho, aggressive and just someone who is dangerous to others. antidepressants are powerful medications that work differently on everyone who uses them, I’m just curious as to why none of them are my knight in shining armour.
I’ll keep trying new medications as they become available because I’m too stubborn to give up hope that one day my mind will be eased and I can enjoy life. And stop focusing too much on what I can no longer do.
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’