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


RIP Mandy 2002-2015

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The Watcher…

Ever feel like you’re watching everyone else live their lives? My life whether I like it or not revolves around how I’m feeling and what I can do on any given day. I have a few friends who are getting married, expecting children or planning on family shortly. I am on the cusp of middle age, don’t plan on getting married again, I’m no ring chaser, it’s not for me. It just seems like everyone is doing SOMETHING. I have to admit I envy the family my friends seem to have hit the jackpot on, lots of people seem close and connected, I never feel that way with my family. I would love to have the freedom to make plans perhaps have another child, travel and go out, but realistically it’s just not possible. I use to be the kind of person who made plans months in advance and a had at least 3 trips per year planned out ahead of time. Everyday was a new adventure without limits. It’s kinda cool that many people nowadays find love, family and companionship at an older age, a few years ago it was common to think that anyone over 40 was screwed and would never get married if they haven’t yet. One old stereotype I will not miss!

The 40 or f**k it list…

This year will be a big one for me, I turn 40 in the fall. I’ve decided to tie up any loose ends of my life before the big 4-0. A few of those things were, reaching out to old friends for the last time, most of them I’ve learned never were my friends really. I will not seek them out again after 40. Another one was hopefully, fingers crossed, was my families commitment to not treating me like shit anymore, eg; bringing up some humiliating experience when I was a kid, talking about me like I was stupid, treating me as if I wasn’t family or looking at me like something was wrong with me. Didn’t happen, so in future any mention of my youth by them will be met with the sheer force of my fluent mouth and a bitch slap with my verbage. Other things like getting out of debt are on my f**k it list too. But the family one was most important, I will not be treated like shit anymore by any of them, I wasn’t included in many family get togethers in my younger yrs and they’re ok with that. So I will be ok refusing to be hurt & stressed by the joke of it all. Also on the list is my ex-husband, this is the year I stop asking my kids if he’s made any sort of contact with them, his problem now. I will not mention or ask about him again, he shit in his own nest.

The f**k it list is all about laying the past to rest and moving forward onto new things, I dont have the health or time for any of it. It’s like a big ole sweep out of the brain. That part of my life is over and I need to start the next 40 with fresh eyes and an open heart. It just seemed important for me, I want to be free of any baggage & free to learn new things and ways of doing them.

This was the year I hoped for a breakthrough with my rheumy, not for a cure, just for acknowledgement of my pain & fatigue. My bloodwork is good with numbers in the normal range, (currently taking enbrel) but I am effin EXHAUSTED all the time. I was very disappointed when my rheumy blamed it on fibro and again refused my request for stronger pain meds. I am now discussing with me, myself and I if I should look into a new rheumy.

This year is going to be a doozey.

Sometimes you gotta…

I told my physical health to F**K OFF yesterday because I felt somewhat normal, my mental health needed me to move and I did, got some of the housework done. Because you spend a lot of time with your mental side when the physical pain stops the body. After a while your head can get kind of abusive towards yourself, you should be doing that! Why can’t you do this? It’s like a complete separation between what the disease does and what your mind thinks, is it because our eyes cant see it? or because we feel it and we’re ignored and discounted by most? I and surely most folks were taught to not be lazy and get things done, it’s not a bad thing really unless you end up with AI disease. Then your stuck on that mindset and your body is stopped in its tracks, the two don’t jive really. Anyways I was having a hard time with my thoughts lately and pain that won’t simmer down. Then yesterday I had one of those few days when you wake up and feel ‘different’ and that difference is you feel like a person again opposed to a tortured voodoo doll. I jumped on it, tidied the livingroom, rec room, loaded dishwasher and did and folded 4 huge loads of laundry! I knew I’d pay for it later but didn’t care, I feel good and happy with myself again. I know I shouldnt feel guilty about not being able to, but I’m too much like my Mom 🙂 Woke up with pain at a 3 that morning by evening it was a 5 and that’s a good day for a rheumy.