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

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.

Just another day

Having issues with hands, wrist, fingers, couple toes, my fore arm clean up to my left shoulder and that wraps around to my shoulder blades and causes burning pain. Yesterday it was weird shooting pains in my knee it actually felt like some one hammered a nail into my knee and I was feeling throbbing shooting pain in the hole the nail left behind. Weird I know but that is the best way I can explain it. Here a couple of days ago my head ache finally let up. I had it for a week in a half or more. Felt like I had drank two bottles of wine all to myself the night before, and I had a wine oh’s hang over head ache, except I didn’t drink the damn wine. WTF?

Anyway I am just glad that it is gone. My feet have been hurting a lot again this description involves a hammer too, in the mornings for a couple of hours I get up and my feet feel like they have been smashed and broken. I am left feeling the pain and ache of every one of these fictitious breaks.  I had a weird pinch/crick in the neck a couple of days ago that is gone, but in its place my shoulder blade burns, the front of my chest directly across from shoulder blade hurts, and I have a tension head ache. Didn’t sleep well last night due to puking heartburn, literally choking on it thats always fun, and its happened a whopping three times this week. So have not been sleeping all the way thru the night for a couple of nights now. Very tired!

Wishes I could bend myself in a fashion that I could rub my own aching shoulder blades and shoulder. Who am I kidding this whole fucking breaking body needs some kind of rub! So damn tired of being tired, and so damn sick of being sick. Quite depressing when you start to wright about it. So maybe this is not a good subject for me to write about. I will think on that as I still don’t know where I would like this blog to go, or maybe it will become just a mishmash of my feelings, wants, needs, poems I like, quotes that inspire me. I am ok with it just being a mishmash of shit considering that is a mirror of my life rite now so why not type about it. Get it off my chest in hopes of seeing my way thru it all.

Well that is enough for now. My arm is not liking all this typing, my neck is yelling about looking at the computer screen.  More later B.

Just a little information about myself.

I am 40 years old I have two children, and one grandchild. They are my life and pride. My blog will be a place for me to vent about my life, and share some of the health struggles I am going thru my life in general. Not that I think I am all that and a bag of cookies (wink). If it helps some one great, if it is just an outlet for me that is great too. I don’t have a specific path I am going to take you on. In fact I may jump all over the place at times as that is the way my life has been for a lot of years now, all over the place. I may even disappear from time to time, I may even appear unable to put good thought or words down this happens in real life when I am talking to people as well.

For the past few years I have had a laundry list of symptoms and ailments. (actually a good portion of my life some of them I thought were just normal aging pains, or my extra pounds talking to me) I will list here as many as I can.

~Issues exercising (it hurts that is all there is too it. Yeah yeah no pain, no gain I have heard it. For me though it is always pain when I exercise even on a regularly scheduled exercise plan no amount of doing exercises gets me past the pain.) I don’t get use to it.

~ Migraines

~Neck pain lots of crick in the neck, unable to use and in lots of pain sometimes last a month or more. Lots of stiffness of neck, tension headaches involving neck and upper back.

~Back issues upper and lower, burning, ripping or feeling of tearing, muscle tightening and cramping burning!! Giving out.

~Arm pain, Shoulder pain, fingers, hands, wrist, elbows, sharp pains, burning, feel swollen, going numb. Not working!

~Chest pain (undiagnosed but pretty sure I have done pleurisy or at least that was my guess, not insured at time so didn’t seek medical care as I couldn’t afford to)

~Stomach issues- Heartburn, cramping, nauseous (get sick as little as I am able to hold off breathing helps) Pains sharp, or sometimes just feels like my stomach is very warm and yucky for hours. No apatite for long periods of time. Don’t wanna get sick, can’t put food on top of this internal fire.

~Sleep issues, not enough, too much, hurt shoulders, arms, hips, head etc keep me up toss and turn.


~Depression and PTSD

~Anxiety alone and social

~Gerd (the heartburn stuff above)

~Tendonitis, Bursitis, Inflammatory Arthritis which might be Seronegative Rheumatoid Arthritis, they have not decided yet! The itis’s and I are becoming close friends.

~Hips, legs, knees, ankles, tendons in back of foot hurt and don’t want to work at times. My feet hurt a lot mostly in mornings and at night, sometimes during the daytime or a longtime gets a visit from this pain as well. It comes when it wants and stays as long or as short as it chooses.

~Legs sharp shooting pains, dull pains, muscle and bone pain, going numb, giving out.

~Knees hurt, weak, unsteady at times.

~Muscles in calf hurt, tight, tingling burning pain.

This laundry list of crap can come and go or stay for long periods of time. I have had stuff quit working they are in so much pain they are useless. My back upper and lower, my arms both, my wrist, my hands, my neck, have all gone out on me so painful they were useless for month and a half this last time my right dominate arm wouldn’t work hurt too bad.

Having head aches and feeling nauseous is my new normal, off of med’s, and on them. Having body parts too painful to use is also my normal. I have been living perpetually scared of my body and what it may do to me next for years.

I am doing counseling, seeing doctors, Rheumatologist (who diagnosed me with Fibromyalgia back in January of 2014 and inflammatory arthritis. He said my GP needs to treat me for the Fibromyalgia but he will be seeing me for the arthritis, not sure how I feel about this. I thought Fibromyalgia was the rheumatologist’s specialty? Sleep study was denied, but they are reissuing the referral in hopes I get one this time. I have see a gastroenterologist , colonoscopy was good did the one clear down into my stomach as well and it was ok. Confirmed Gerd and IBS.

I should have also put face pain in the laundry list above. My face aches at times, sometimes feels like sinus’ and other times feels like my eye sockets hurt, or just the bones in my face in general.

Last winter was a serious pain in my physical body. This Summer was no better over hot and so uncomfortable. Is now back to fall and I can so feel the chill in all my bones my whole physical form is hurting and winter isn’t even close yet. Just a week ago we were doing 80 some degree weather before noon, and now it takes till 2 or 3 pm to start feeling some warmth and that is just for a couple of hours and it starts to drop again. I am not looking forward to winter at all.

I am on all kinds of med’s some are helping and some I feel are not or at least not yet. Some of them take six months or more to get on board and start doing something. So I get to feel like a test subject.

I feel I was treated as an addict because I don’t want to feel this pain any more it has been going on for years progressively becoming worse. I know pill addicts are an epidemic in my county and my state. Them I am not, nor do I want that life, I just want relief, or at least something that will cover my pain long enough to get more done around my house!