My steroid shot didn’t like me this time.


Seen the Rhumatologist Friday and he gave me steroid shot in my left shoulder. It has been hurting for some time now, while losing range of mostion due to pain and stiffness.

Left shoulder felt very good right after the shot, the next day was ok, sunday  lil sore, monday becoming a lil more stiff and really sore now. Here we are on Tuesday with pain all day, movement is dimineshed , lifting it away from my body is becoming an issue. It is making me worried, if this contiues at this pain level till tomorrow I will be calling my GP to take a look.

Next Day: GP Bursitis/impingement. Ordered X-ray, Physical Therapy, Ice, and rest for the arm. I knew it was  along the lines of Bursitis, as I have had that in my Right shoulder more than once. I just don’t understand why the Steroid shot would bring this on? I have had the shots before in shoulders and this has never happened, was not even aware it could happen. I asked the doctor why whould the Steroid shot do this, she shrug and said sometimes they just don’t work. Well ok Thanks Doc, doesn’t really tell me why the steroid shot gave me Bursitis. Will send my Rhumatologist an email to see what he says.

So here I sit with a shoulder that hurts like hell, doesn’t help I had to drive to doctors, to hospital for x-ray, and all over town for my brother. So arm sadly did not get the rest it needed today, ugh….But it will tomorrow.  Will post again on this if anything new arises or happens. I hope this little entry finds everyone doing ok. Work in Progress Mystical Luna Rose.

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.

Anniversary…Where did 4 years go? Looks under the carpet…Nope not there ;~)


So WordPress sends me a ‘Happy Anniversary’ message, it’s 2 days old as of this writing, but it says I have been a member for 4 years. What a long time, in which I have done a lot more reading than writing. Well if I’m honest I have done a lot of reading and I have enjoyed it all. I have written a lot of comments most of which I erase, I have written some blog entries and posted them, but most I write and then erase.  Why you ask? I don’t know, I do a lot of second guessing…These days I have a lot of issues finishing things, my follow thru is broken….<<< LOL at that one, but it truly is, as funny as it sounds.

I use to write in journals, poems, songs, my thoughts, I thought I would do it forever. I don’t do it much any more. I have been thinking lately I should pick it back up. That is why I started this blog actually.  I have been in a bad spot of late a lot of stress from the past, and the present keeps heaping it on as well. This crap with my health isn’t helping any either. I am trying to get to know this new body, and what it’s new normal is but it isn’t making that very easy. So I really think I should try to write more if for nothing else than vent on a regular basis and following thru!

I am glad to report my ongoing migraine is under control, that is good news. I am no longer taking methotrexate due to some serious hair loss, started out as a quarter size loss back at the end of November, it is now the size of a small pancake. I can no longer style my hair down with out the bald spot in the back of my head showing! (cry’s, this is a huge fear of mine and always has been, that and my teeth falling out I have had dreams about both and now this!) So I am now trying Enbrel via the epi-pen like shot thingy (yes I used thingy as a word.) I have to give them to myself, ugh!!! I do fine so long as I just do it and don’t think about it for too long, I so far have not noticed a big difference as of yet.

As for the bald spot I wear the hair up, I am trying hats out…Hats not my thing at all, so I have a wig coming…oh wish me luck with that one. I am a OCD perfectionist at times.  I am also having issues leaving the house at times, this has happened to me off an on for years, but it has been at its worst for the past year in a half but really bad for the past few months. Not sure why…I’m working on it I leave for what I must, I am late for way to many things due to this anxiety, and I am really late too things I am going to by choice if I don’t miss them all together! Work in Progress.

Depression has been getting worse ever since they started talking Fibromyalgia, inflammatory Arthritis, that may or maybe not Seronegative rheumatoid Arthritis which is what they are leaning towards, and there is or has been a lot of family stress within my household family as well as my immediate family outside my home. Some recent stuff happened as well that are adding to this that I am not ready to talk about here just yet.

I don’t see Rheumatologist again until March at that time he will refer me to a dermatologist for the lack of hair growth returning since my stopping methotrexate. Not sure if he will change the Enbrel dose to a higher one since I am seeing no changes as of yet or change it completely since I am still having hair loss or what. Last week though I actually thought there for a little while a couple of days after the shot that my hands seemed less swollen and a little easier to use I felt hopeful even.  Then this week I most definitely don’t feel they are less swollen now 4 days after the shot.

So waiting for the wig to arrive I am anxious to see if it makes me feel better or at least happy for a little while.  I am hoping it makes me want to dress up and get out of the house a bit more. I am going to ask my counselor about what it takes to volunteer at the local women’s shelter. I have always wanted to help out at one. I think I would be really good at it and I would love to make a difference in their lives.  It’s something I have always been very passionate about, I lived thru it with my mom she was with an abusive man for many years. If I could just help one get out and on her own safely I think I would find that very gratifying.

I only wish I could be sure it wouldn’t be a trigger for anxiety or worse…I can’t live in fear of these things for ever though, at some point I have just got to do and work thru it right….deep sigh. I can do this, I use to do this…and I will again.  I hope my long choppy, all over the place note, finds you all doing well gentle hugs, Peace, Love, and Light to all.   Work In Progres Mystical Luna Rose

Beauty: Peeling Back the Layers


Very inspiring, great writing, supportive, just beautiful, I am sure I will find myself going back here time and time again!

Finding Out Fibro

I’m still getting used to the idea that I can’t be fixed, because I’m not broken in the first place. Everything good about me is still here. I am not worth any less than before I became ill.

Harder to get used to is the idea that I didn’t do everything wrong; that this is exactly where I need to be right now.

Hardest of all the lessons I am learning is that I too deserve to be happy and loved. I even deserve to love myself, for that matter.

Crazy how notions that seem so simple and straightforward, things I tell people all the time and think I understand, will refuse to fully sink in for myself until the right moment.

It took me until this year to realize that my vision of my own relative unattractiveness was based on something false all along, which is the idea that women (or anyone…

View original post 1,663 more words

Another Day A.K.A. An Update To An Update


I am still not feeling well. I went to see a neurologist for my headaches he just spoke to me for a bit and upped the meds my primary doctor had already prescribed to me, The head ache is no longer constant but sporadic now, the meds are doing something. Except that now I am having a really weird tension head ache. My usual tension head ache involves just the muscles in the back of my neck and the lower portion of the back of my head. Well now it involves all the above plus the whole skull and the muscles just behind my ears as well. It’s also reaching my left temple and forehead as well as the left eye sometimes.

All of my muscles today are exhausted…Had a birthday party for my niece yesterday, and a Christmas parade that I attended. I can and do assume this has something to do with it. Today is a very blah day. I didn’t want to get up, but I had to watch the ‘Seahwaks game against the Philadelphia Eagles’ Go Hawks we Won, that made part of my day Happy! Every muscle is so tired I am having shooting pains in my arms, wrist, shoulders, knees, all of my muscles scream at any and all movement…they don’t want to do anything. My lower back muscles spasm if I try to bend over and pick up laundry, my hands and wrist are tingling and aching at typing, everything inside my body yells pissed off and inflamed today.

Again last night for like the 5th or 6th time I woke from a dead sleep puking, rolled out of bed to land with my head in my bed side garbage can ugh!!!! Don’t know why or what causes this. It started shortly after I started the Methotrexate  for what the Rheumatologist will only call ‘inflammatory Arthritis’ since January of 2014. I seen him again on November 27th, he said all of my inflammatory numbers were down (this shocked the hell out of me, as I do not feel they are down, I still don’t feel they are down, I still hurt from head to toe, he says it will be hard to feel there is a difference as I have the Fibromyalgia as well…..pfffffttttttt GREAT!!!) He says I look great….I say Thanks…(I don’t know if he truly see’s me or even remembers what I looked like 3 months ago, but ok he thinks I look better!! WTF!!) From the moment he walked in the door before he even said the above he states we don’t have time the apointment is already almost over. So anyway he continues to tell me I looked good, how do I feel, I state I don’t feel well at all, still hurt all over, having bad headaches, blurry vision at night, not sure maybe just cause I am tires, eye doc says my eyes are dry, I already use natural tears all the time…he says we will be upping your Methotrexate…I say oh yeah and I am going bald, I have a big bald spot in the back of my head the size of a silver dollar and its as smooth as a baby’s bottom. It just showed up out of no where  one day I happened to notice it and I cried, what the hell dc why am I losing my hair?? He then says ok let me see, he looks then says ok, no more Methotrexate, we are now waiting for the approval of Enbrel from my insurance and then I will be injecting myself for ‘inflammatory Arthritis’ that my Rhumatologist has named once in an email once that may or may not be ‘Sero- Negative Rheumatoid Arthritis’ but has yet to speak to me directly about this. Utterly confused and scared.

Scared in my own skin and wondering how long this kind of pain can go on inside my body like this!

I was  able to call my primary doctor and get some muscle relaxers and try to relax these muscles that are so tight in my neck and head (if muscles in one’s head can even be tight….I swear to you my skull is tight or my brain is swollen something is weird) in hopes i can loosen this tension headache a  bit, suprising getting them was easier than it has ever been and on a friday no less. Or she (the doc) finally took sympathy on me for once! I heard tell it was her half day in the office, I bet she didn’t want my scrip to be the friday hang up to getting out of the office and just said oh all right let the poor girl have her meds, with out the normal run around we put her through, snicker, snicker…..I send out a hearty Thank You to the med ferry’s that this helps and quick.

I must say this week feeling is for the birds, the plain dead tired, head heavy, can’t function feeling is truly the pits. Some good news though (Great way to end this painfully long-winded post ;~) ) My sleep study is tomorrow. Lets hope this goes well. I am more than a bit nervous about being in a strange place. Knowing I have to sleep there, knowing I am going to be watched as I sleep ugh. I am going to miss not having my dog with me in bed, and I am going to worry about my LuLu at home with out me. She my Lulu will have my son and his dog to keep her company but still we are pretty close.  So that is where I will close this post for now, my fingers are threatning to go completely numb if I don’t stop. Too all you chronic pain suffer’s out there ‘Gentle Hugs’ Peace, Love, Light, and Brightest Blessings, to You all MysticalLunaRose!

Update


Just a quick update I am on my way to the sleep clinic for a consoltation to see if they are going to give me a sleep study or not, wish me luck I hope they give me one. As I understand it, a good night sleep for a Fibromyalgia patient is very much needed to help us to feel better, I can hope and it doesnt hurt to try.

I also wanted to make a quick update on my last post I am still hurting like hell and I am still very much frustrated and at my wits end with my level of pain. I want to remind every one of the name of my Blog ‘Mystical Luna Rose’s Rants and Rave’s’ Its not nor will it ever be ‘Mystical Luna Rose’s end of life Rants and Rav’s’ I feel a need to say this as I read a blog that made mention of reading alot of blogs of late that sounded like peeps were giving up, and how sad as all we were dealing with was pain and there are people out there dieing from their illnesses and to them I truly am sorry and my thoughts go out to them and their family’s during their struggle and fight. I am not nor would I ever choose to check out on this world or my family! I have a brother that did so, and I know how selfish that choice is. I am having a very hard time rite now with an awful flair that seems to not want to go away or be tamed by meds, or doctor assistance and that is frustrating as hell but not a life ending circumstance. But it was and is a topic and circumstance worth Raving about or at least it was for me, getting it out was a great release for me and I am greatful for that and I am greatful for any and all of you who read it and get something from it even if it is just the small comfort that you are not alone in your fear, concern, frustration, anger, pain, and your fight to find relief in any small measure while living with the  constant misunderstood painful condition that is Fibromyalgia! Peace, Love, Light, and Brightest Blessings, from a Peaceful Seeking Soul, Gentle Hugs, Mystical LunaRose.

Flare From Hell


I feel like this ‘Flare From Hell’ is a year or more old! I kid you not. I have had my neck go out 3 times this year alone, my shoulders have been in excruciating pain. My hands hurt, they are swollen every morning, my thumbs are starting to hurt and ache alot of late, the whole hand goes numb, wrists hurt, growing a bump or nodule on left wrist below thumb seems to come and go. Both hands when I use them for an extented period of time driving, writing, doing dishes, folding clothes, well anything they feel tight in the palm and achy like a chally horse (question that spelling my brain is not fully in residence!) cramping!

My feet are doing the chally horse thing now too, I recently whent to see the foot doc he gave me some inserts for my shoues for the first week they were great I was so happy, now not so much they are making the cramping and aching so much worse. I just want to cry when I am walking or standing on them for any length of time and I have to do both, ugh WTF now!

Migraine for over a month and a half now they have started me on so new meds to try and keep them at bay takes a bit to get on board so I am hoping something soon! So now I am dealing with my lower back my neck is out really in a lot of pain and today is a sunday thinking about calling on call docotr. I can’t sleep well, turn my head, look down, etd just awful pain clear up into the back of my head all the way down my back and into my cheast and over into my left shoulder, lower back is getting some of it too oh hell it is every where today. I could just pull my fucking hair out, I don’t know how they exspect me to just deal with this. Primary doctor says I am at the top of all my meds ‘Cymbalts and Lyrica’ and she just doesn’t know what else to do for me….WTF….I feel all alone and scared as hell. I don’t know what I am supposed to do.

I see the Rumatolagist just after Thanksgiving I may have more answers at that time about the inflamatory arthritis and or seronegative rhumatoid arthritis confirmation? And how I am doing on the Methotrexate cause frankly I don’t feel it is doing shit thus far! Making me sick, giving me hellashiouse med hangovers adding to my dizzy spells. He has had me doing blood work once a month for the past 3 months to monitor things since I started on the methotrexate medication (he is 2 1/2 hours away frome me so I have been doing them localy and they have been faxed to him)  since I do them here I have been picking up copy’s but no once not my primary doctor here nore my Rhum’y doc up in Seattle has been saying anything about the results, I can see what is high and low but that doesn’t tell me much. I can see my WBC is high, my markers for Inflamation are still high and a few other things are out of wac as well. Still I can’t put any of that together  to help myself! No one is calling so I can hope fully take that to mean I am not dieing rite?

I am drowny in a sea of pain witn the lifte guards (the Doctors) standing on their pretty yaughts looking at their x-rays, blood slides, MRI’s, biopsy’s, physical therapy’s, fibromyagia handout’s, scratching their heads holding my life ring wondering if they should toss it too me or not because they have no clue if they can help me when they get me on board, because all their little slides, and big machines say I should be just fine and they don’t know what else to do for me, yet I am NOT FINE!! I AM DROWNING IN A SEA OF UNBEARABLE PAIN!!!!

They tell me that pain meds don’t work for what I am going through this is based on all the other patients with Fibromyalgia, Inflamatory Arthritis, Anxiety, Depression, IBS, Tendonitis, Calcified Tendon of the shoulder, and who knows what else. This kind of pisses me off! I don’t want them if they don’t work and I would be the first to tell them they don’t work if they don’t. I don’t want any of these meds, they all make me feel dizzy, sick to my stomach. I don’t want to be an addict. I would like to be able to go to the grocery store with out Anxiety, I would like to be able to lesson the pain in my head when I am having a migraine, I would like to be able to ignore or block the pain I am having in my back so I could stand at the stove long enough to cook dinner, or do the laundry or vaccume the floor with out lower back spasms and pain taking over my lower back and legs. I would like to be able to stand in a grocery line with out my feet hurting so bad that I wish I cold hang from something so I wasn’t standing on my poor feet any more…or block the shocking and stinging pains in my arms and legs. Maybe take away or block the constant deep aching hurting pain in my lower back and hips. I could go on and on like this. I think I should be able to see for myself that it does nothing for me. They can monitor me etc, I shouldn’t have to suffer because of people before me that have abused the system and the meds used to help those in pain period! I should be given my chance under what ever guidlines they set because I have no doubts I could pass them, if they work Great, if they don’t Damn it! And I will be the first to let them know and return what ever is left of the worthless pain pills that didn’t work and we can try another and another until I finaly come to this conclusion they want me to swallow just on their word that it doesn’t work and that I couldn’t possiably handle even if it did work because I would become an addict.

I don’t know any more I am mad, sad, disgusted, scared, tired, confused, hurt, lonely, guilty, depressed, moody, emotional, full of soooooo muchhhhhh painnnnn.

I am not sure how much more of this I can take. I have not slept well in days, I go in for a sleep study consoltation this will be my second, for what ever reason the first one didn’t think I needed one even though I had 3 doctors my primary, my Rhumatologist, and Psychologisty refering me I suppose I didn’t look sleep deprived enoungh I am not good about talking about myself and how I feel in person It makes me embarassed I look normal how can one person feel this bad, have this many things hurt its just fucking crazy rite!!! It truly is it blows my own mind, any way I guess I should have wrote it all out for him I think I do that better than I do talking about it all in person I don’t know.

Well I think this entry has turned into a novel so I will go and try to get some rest and hope that helps this

‘Flare From Hell’ cool its heels a bit. Peace out and Gentle Hugs to all my fellow Chronic Pain Friend’s

Note: Plese excuse any typo’s or misspellings as I frankly didn’t give a shit at the time, lack of sleep, too much pain, and scrammbled eggs for pain<<< was meant to be’ *brains ‘ are to blame.

Brandy