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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Hair I love you


   You have been with me all of my life, I don’t remember one day with out you. I have always thought of you as never ending, ever lasting…I have taken you for granted, and I am so sorry. I have slept on you, I have abused you. I have chemically changed your color, your texture, I have cut you, snagged you, pulled you, wrapped you too tight, many things have been done to you. I am not alone in my treatment of you, every woman and man has you as well, and they too have abused you at one time or another, so it’s not just me.
I have always assumed you would be here…when you disappear on a man (I know it bothers some and not others) for me though I think most men look good with or with out you. For me though a Women, your loss is so breaking my heart, it is destroying what little confidence I had.
We already had issues you had been uncooperative for some time, I couldn’t find my way to a satisfying relationship with you no matter what I tried. I loved parts of you and yet I despised other parts of you. I regret that now, and I miss you.
I truly never believed you would desert me like this, I just didn’t think it would happen to me! I was not all bad too you, I would do special things for you too. I would take great breaks in between chemical changes, I would treat you gently when I did chemically change you. I would use tools with you gently etc and still you have gone away. I have watched you leave me in little pieces, I have morned the loss long and slow, I am barely able to cover you now.
I don’t know what I will do next if you continue to go away. I miss you please come back to me soon. Over the years I have often dreamed of this happening and how mortified I would be, so needless to say I have been a bit of a wreck lately…leaving the house is getting harder and harder to do, as I am unable to hide or disguise the space you vacated. We tend to forget to really admire your beauty and our true feelings and love of you until you are gone, suddenly. Then it truly is revealed how loved and lovely you are! I miss you Hair, if you could find it in your Silken Tresses to forgive me, I promise to appreciate and enjoy you more, just come back to me.  It might not even be all my fault I was thinning for some time up front, then Methotrexate entered our lives and you went into shock losing a  quarter size patch in the back of my head that is now the size of a small pankcake 3″x 3″ maybe and you are off center, this is so not good for my OCD tendancies that don’t like off center things. Breath….Breath….Breath……………

                  Work In Progress, Mystical Luna Rose.