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


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!