A Long One


Went to see the Rheumatologist Friday. We are keeping enbrel for 2 more months if still having high inflammation markers we move to remicade (question that spelling) infusions. He decided my hair loss (Now that there is another spot starting) is not because of Methotrexate but alopecia Areata (Question that spelling as well) Still working on inflammatory arthritis that could be seronegative arthritis, Fibromyalgia as you know, something about ankylosis spondilitis in my lower back is responsible for the lower back pain and when it feels like my spine is swollen. He is checking my thyroid (if I am any judge of the blood work and my research skills on-line I think this is fine per the results on my patient portal ;~) ) He also said something about maybe having Hashimoto’s something like that, I have yet to look that up yet. He gave me a steroid shot in my left shoulder, felt real good just after the shot, just like last time. Until Sunday it started feeling painful and getting stuck at that certain height again, along with pain in arm period from wrist to shoulder.

Same list of aches and pains as always. Same level of fatigue going up there all day friday wiped me out, slept all day saturday, and still felt the need to recover sunday but I had a candle party to attend even though I have no money. It was nice to speak to other lady’s. Or it would have been. Like always I was Late by almost 2 hours…yeah you heard me right 2 hours…no I didn’t over sleep, I didn’t have a med induced hangover, I didn’t have a great nights sleep, but I did get a couple of hours, I heard my alarm clock, I got up a 8 am. I had coffee and I went to reading blogs like no other. Oh I found depressed and I have been so depressed for a long time I don’t why I have not looked there sooner…any way I did and I read, commented, carried on conversations and spent most of my day enjoying that. Then I had a freak out mode of I don’t want to go, should I wear make up, I look awful, I don’t have clothes that fit, I look like a clown, I am too fat, I am too this and that…nervouse, I shouldn’t go, I have nothing to say..I have not seen so and so in I don’t know how long….what do I say….I feel bad I have no money to buy anything…why am I going?? Cause she asked me too….cause she invited me to stay afterwards and sit in her 4 man ready set hot tub..sounded good, I could use a good hot tub for this aching body of mine, and some adult conversation. So I went but it took me a long time to get out the door. I overly criticized everything for a long a$$ time…I was so pissed at myself…and so stuck in the mode of doubting everything I wanted to wear, every make up move I made, my hair, my shirt, my pants, my shoes, I had to ask my son, my room-mate, is this ok..too much make up, too dark, are these shoe dorky, how bout these pants…and this hair thing is it ok??? look like my hair color?? can you see my bald spot?? Am I over dressed for a candle part??? I’m a fu*@ing ding dong is what I am telling myself about now…I am driving myself nuts…now the host is calling me to see if I am going to make it…I reasure her I will  be thee, I am just a lid behind but on my way, so sorry for the delay. It’s all I could say. This is so exhausting…

So candle party was short and sweet as I was late..lucky me I didn’t have to entertain or talk to much about me and what I have been up to. My oh so exciting life of the chronic pain chronicles…There were several people there it was truly nice to see again, and got there with just the right amount of time for me. I didn’t step outside myself (if that makes sense to anyone) once to get by. I was a lil nervous with 2 of the lady’s no need and I know this…Its just hard with some.

Sighs…did you all see the title…its one of those moods…I was so pissed off saturday when I finally woke up. My back was so messed up from the 2 hour drive up and the almost 3 hour drive back due to rush hour traffic…I was like really you couldn’t have visited when I got to his office so he could have looked at you with the ultrasound he likes so much!! Grrrrr….It’s like everything went on break friday…but we are all in attendance today late night sunday early monday….just pissy I am.

I can’t help it I hurt all over the hot tub was great while I was in it. I feel like I hurt worse once I was out of it though what the he*$ is that all about? I enjoyed myself though and that is what matters.

I am trying to think of something great to tell you all…thinking…..My daughter is 7 months pregnant with my 2nd grandchild and I’m invited to her ultrasound tomorrow/today, I am very excited.

It looks and smells like spring around here, I live in the Pacific North West and I couldn’t be happier about this time of year. I wish I had more energy to go out and till a big garden and plant a bunch of flowers. Room mate and my 14-year-old son may end up having the same days of around spring break I am hoping I can get them to get it going for me. :~ ) wish me luck with that one.

Ok I have said enough for one night. Work in Progress Mystical Luna Rose

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7 thoughts on “A Long One

  1. I too have those freak-outs when I’m set to go out. I’m so desperate to get out of the house yet dread to be seen. I feel like I walk around with a neon sign round my neck flashing the word freak. I also dread conversation as all I know about at the moment is pain and who wanna hears about that? How can I engage in conversation when I bore myself? Great post and thanks for showing me that I’m not alone x

  2. My Mom had RA, my brother has ankylosing spondylitis, & I have MS. Your post sounds so familiar! I don’t know if you’ve heard of Dr. Terry Wahls, but her work w/ anti-inflammatory diet & lifestyle is life-changing. It can be overwhelming (a lot of info), but her latest book is good, & when you’re in pain & can’t take it anymore, an anti-inflammatory diet doesn’t seem so hard. 😉 (I’m trying… It’s a process! Lol.)

    XOXO
    Jess 💋

    • Thank You for the info, anything that might help is worth a look and possiable a try. In the face of chronic pain what do have to lose by trying a diet that could help. Thanks again for reading, commenting, and the great info. :~)

  3. I feel the same when I go out anywhere, always worrying about what I look like, what people will say, what will happen so much so that a lot of the time I end up talking myself out of going. Even if you were two hours late well done for getting out 🙂
    As for the pain never being there when you see someone about it, I’m sure pain does that on purpose to try and make you out to be putting it on. Stupid pain

    • Right…dammmn pain knows when to hide…for seek and find me…come on doc do you know what I am?? Over here…lol
      Yes I am glad I made it out, I almost desided not to go. There happened to be some one there I have not seen for a while and I really wanted to see them. Motivation was good, and I really was looking forward to the hot tub too. All in all it was a good day. I should be sleeping now, but alas sleep eludes me.

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