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

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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.

The week before…

This is the last week of my 30’s, I turn 40 next week. Its been a monumental spiritual growth year for me because of the big number I’m turning, I’ve changed what I will do in the future. Firstly, I’m leaving my past exactly where it is. No more reaching out to folks, I want very little of my time wasted on people who weren’t really friends/family with me to begin with. This was a problem I had, always being friendly accepting and chipper, no more. My ex husband is also banished to this mental behind the fence area, he hasn’t contacted his children in years and I’m done wasting any time thinking about him. Familiar BS, as in my family treating me like shit, no more. My intimate relationships are being held up to a higher standard too, I better see some good ole change or I’m out, tired of bullshit & promises broken. Sounds awful but I’ve actually freed myself from a lot of heartache doing this, this emotionally abused dirty doormat is done.

Rheumatology wise, I have gotten worse. Its been a gradual decline but I notice it. I am able to do less, have more pain and as a result more depression and anxiety because of the decline in my health. It wasnt an overnight omg things are worse kind of thing, just something I’ve noticed over the last year. I see other rheumies happily chatting about how many miles they ran today, all I can think about is how much my left hip hurts f I move any part of my body. If you are in the same situation as me you may have experienced blinding pain, where everything goes white and you yell because you can’t help it. That’s my hip, just one joint, brings me to tears. I really do wish I could move, movement is important to human beings and if you can’t get around something is lost, your psyche knows it.

My children are my joy, they do not understand how sick I am right now and that’s a good thing. They have time to figure out who/what they want to be. A quest in life that doesn’t need to be bogged down by worrying about Mom. They joy I have about watching and listening to them learn new things, new experiences, is priceless. Both are healthy, strong and focused. Most of all loving, what more could a parent want?

Hopes for a warm Autumn and less pain ~

Big kids.

Ahhh September, back to school days, I can go shopping during the day in peace now. Funny thing is both my kids (20&21)are taking college level courses, my son is starting his welding career (his 2nd ticket, hes already earned 1) and my daughter is moving onto her 2nd yr towards her red seal in culinary arts. I suspect when she has mastered that she will learn something else, the same goes for my son, once he gets too good at it, it begins to bore him. My daughter passed her road test the 2nd time around, she was so flustered at her first attempt, a murphys law scenario to be sure. She lost some confidence but got it back quickly and is now a licensed driver. I can’t express how happy and proud they make me, they’re my sunshine, completely. Now to get my sunny boy motovated to be licensed, he lives on his own & pays for his schooling. I have no complaints really. My girl is off for 3 weeks on Monday to Burnaby, B.C I’ll miss her.

I love you both, keep yourselves safe

Mom.

My wits run out.

What is a tack thats lost its point? A flat boring piece of metal.

That’s how I feel these days, a flat pointless tack. My brain fog has me so flustered, I feel like breaking things. I’m not sure if that’s normal but I don’t really give a shit. When the pain and stiffness started years ago I always had my fallback, my wit. It kept my sanity along with a bottomless pitcher of sarcasm. I didn’t know what was wrong with me, humour made it bearable. Recently I’ve been feeling too scatterbrained and doozey, more than ‘usual’. It’s a bit much really. I’m easily frustrated these days too, my stress has risen because of this ‘fog’. I’m po’ed about it, and I’m dreaded what is next, it’s taken enough. That greedy bastard.

August quickie…

It truly hurts to know or hear of anyone suffering. There are hundreds of processes in the human body that need to work ‘just right’ for humans to be mobile, think, rest, heal, you name it. If you really think about it, its miraculous so many people are upright and moving. Screw with any of these natural processes and it can throw you off course and into the abyss. I miss abilities healthy people take for granted, I am adhd and hyper (before I got RA). These feelings still exist but I have to ignore them, its torture. My inherent self wants to be moving, all the time. I miss the motion of life and feeling like I could do it all, but that’s not possible anymore. A big part of me wants to boot people who can move but just sit stagnant in the ass just for being lazy.

Appreciate what you can do, kick the arse of folks who can, but don’t do. I’d gladly take your mobility.

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 🙂