So I was thinking, Id like to figure out how to get a fibromyalgia awareness walk in my state. I looked the walks up this year and there are only in about 5 states that have them. Which is actually very sad. I wish they were in every state. Awareness people awareness…A
The closes awareness walk to me I believe is like two states away in Tennessee. If my memory is correct,,, buutt I have such a bad memory that I wouldn’t bet anything on it. Haha.
I sent an email to someone who I came across in a Fibro web page, but I haven’t heard anything back yet.
I’m really not sure how to go about it. I know it has to be signed up somewhere and probably approved as well. With lots of organizing and advertizing or something to get enough people here to actually do the walk.
I know I could post in different fibro sites and word of mouth and im sure there would have to be some kind of a site that everyone would have to go sigh up at.
Any advice is appreciated 🙂
So I finally heard from the Pain Management office today, to set up my first appointment. June 8th,,, Say what? It’s only April 27th today. That’s almost two months away. Are you kidding me? I didn’t say all that. Only said wow that’s far and she said I know, but that’s as soon as we can get you in. So yeah. After I hang up with her I was thinking about how there is no way I will last that long. The pain I’m dealing with non stop is going to drive me insane. They are going to give me a nice little white coat that let’s me hug myself 24/7. UGH… I’m so miserable. Why didn’t my GP just up the one med like last time because it had made such a dramatic improvement then so I bet it will again. I just need help. I can’t continue living like this. It’s inhumane.
Then I thought, I’m just going to call his office and tell them my issue’s, feelings and idea. So I did and it was so easy. Here I am prepared for a fight to help alleviate my pain but, nope.. They just sent a note to his desk and about an hour later I got a text from my pharmacy saying my Rx is ready. Holy cow. Grreeaat!!
I’ve now taken my new dos twice and It defiantly has helped so so much already. Why have I let my self suffer all this time when I had a feeling this would help. I should have called my doc so long ago. Now hopefully my leg’s don’t get any worse.
Still not real sure what to expect from Pain Management. My sister said she went years ago for her slip disk’s in her back and they basically put her through every test possible then said sorry, but we can’t fix it. Although here are some meds to help manage your pain. Now that being said, I’ve also read about so many different experiences with fibro and Pain Management. Like physical therapy, massage therapy, ( Which sounds great! Sign me uppp!!! ) and much more. So I’m hoping since it’s fibro and we already know there isn’t a cure that we skip all them test’s and just focus, in a pain-free way, how to help me live with my fibro and manage my pain. This fibro crap is just one long painful experience that will unfortunately last the rest of my life. UGH…
I had got a phone call from my doctor’s office on Friday to check on me and see if the last med modification had helped with my flare-up’s. Which it didn’t and I told her that the new cream I have does absolutely nothing. She of course has to put the info on doc’s desk for him to review and they will be calling me soon with new information from the doc. Friday night my daughter had a double-header which the weather was just freezing for. I felt like I was in an ice box the whole time. Which might have had something to do with my fibro. It can do that. Don’t get me wrong because everyone was really cold but I was a little ridicules. 3 blankets plus a sweat shirt and a jacket. Then Saturday was my daughters slumber party which was 5 of her friends from school and Sunday I took the group of girls to Magic Mountain, McDonald’s, Rue 21 and to the pet store to play with the animals. Monday morning I had to get up at 4am for work. I was just so exhausted to the core due to everything over the weekend. Thank God it was a slow day. My Doctor’s office calls me back while I’m at work and tell’s me that my doc had really hoped my Rheumatologist had helped more and that he really doesn’t know what else to do to help me. So he’s going to refer me to a pain management and will give me a call back once they do that. I was so confused because he had talked about other options with me in the past. Like simply upping the meds im on or even switching over to another group of meds and trying them. which is actually the group of meds that he thinks I’d need. but nope. Because I suddenly get that he don’t know how to help me and is sending me to pain management. Like wait, what?? I felt so helpless, unwanted, lonely, sad, scared…ect. I went home and just layed in bed. Skipped my daughters game and just cried. Cried because of my feelings and cried because all of this had caused me to have a bad painful flare-up. I cried and slept for hours. My family didn’t even have a clue. They just thought I was sleeping because I had got up at 4am that morning. They usually don’t have a clue of what i’m going through though. They only know what I tell them. Which I guess is how it is with an invisible illness. Not that they understand anything that I do tell them. Fibromyalgia is so hard to explain. Plus I always feel like I’m being a cry baby. I hate feeling that way. The next day I felt much better, but with leg cramps all day. My husband and I had the day off together which was great. He had woke me that morning with kisses all over my face. Best way to wake up and I defiantly needed that. I felt so loved. I love that man so much it’s crazy. Kids were at school. House to our selves. Nice quite and calm. He worked on our daughter’s remodeling of her room and I tried to just take it easy. Now here I sit Wednesday morning. my second day off. Everyone is gone. House to my self. So quite and peaceful as I sit here Writing.
Pregnancy,,,, That feeling of someone you love like no other growing inside of you. Nothing can compare, NOTHING!! Oh my, but again pregnancy… ugh side of it. Uncomfortable, sweaty, nauseous, constipation, vomiting, miserable, giving birth…ect, but then that beautifully perfect baby in your arms after. Do I really want to do all of that again or not??? IDK. ugh… I was so sure I was done and I have 2 wonderfully imperfect but perfect for me children. Actually teens… But why do I suddenly feel so confused? I was fine and then my husband got a vasectomy. I guess growing up I always assumed I’d have 3 children, although im not sure why I always assumed that. Plus I always wanted a boy first because I always wished I had an older brother. I have no clue why about that either. I’m the oldest of my 2 sisters and step sisters. All together there was 7 of us. Plus 5 God siblings who half grew up in our home as well. Also very close cousins around all the time. One of which is finally older than me and more like my big sister, whom is dear to my heart. My childhood was loud, full of children and great memory’s. Anyway, I did have a boy first. Naven, whom is almost 17. Then my daughter Rylie whom will be 13 on April 28th. After we had her life just did it’s thing and kept moving on. At some point I felt like yep I’m done. Then I got Custody of my nephew Kaegen for a few months after birth. Then my mother took over custody. His whole life my mother and I have been parenting him. So I always say I have 2 1/2 kids. He will be 2 in june. So I felt for sure I was done having babies’. Kaegen was the hardest and still is the hardest child I’ve ever taken care of. So please no more babies’… Right??? Oh man the images and thoughts that have run through my head since his vasectomy. What is wrong with me??? I almost told him I now want another baby. Ughhh. I think the possibility being gone scares me. I didn’t want anymore but having the option made me feel secure. So now what? Do I have another baby because I’m scared I might someday regret not having one? Will I always have this feeling? Or will this feeling pass? Ugh. Plus having fibro will make everything so hard and I already never know what my day to day life is. I just hate the feeling of all this confusion in my head…
I hate fibromyalgia, I hate fibromyalgia…… UGH. So I’m still in a fibro flare. My whole body hurts. Everything, everywhere… So I almost forgot why I started this blog, other than the fact that I love to write. It of course was because of my fibro. Which I’m not sure if you know that i hate. So fibromyalgia is really still new to me. I had never even heard of it untill I got it. I know my sister has had it for years and had told me probably a lot, I’m not sure, but i never even really heard her because I don’t remember her saying anything fibro. All i heard was something is wrong. I guess because I never heard of the word fibro so it just never stuck with me. Then back in 2012 I noticed something was different with me. Then I realized something had to be wrong. my wrist hurt when I write and craw or put pressure on them. I was also exhausted all the time. Everyone would always say that it’s just because I was getting old. Mind you I was only 33 years old. As time went on I felt worse, but just dealt with it the best I could. Then in the summer of 2015 My life changed a lot. We bought a new home which was amazing and I got custody of my sisters brand new baby boy Kaegen whom I call Boogie and or Jax. 🙂 I no longer have custody of him, but he is very much in my life.
Anyway after having him for almost 3 months I was in a lot of pain. The pain got worse daily. I was so afraid I might drop him because I had lost strength in my hands and dropped things often, I still do. I was in so much pain by august of 2015 that I would lay there and cry all the time because NOTHING would help take the pain away anymore. I went to doctor after doctor and had test after test. Finally I was diagnosed with fibromyalgia. What the heck is fibromyalgia?? So I researched it like crazy. After time I realized i needed to change some things in my life, the certain way I may do things and simply change the way i live my life.
I also like to talk about my fibro. I feel like I just want the people who love me to know what it is. To know whats wrong with me and I really thought they would want to know everything, but finally one day I had the realization that others really don’t want to learn about fibromyalgia. That all they want to know is my diagnoses and that I’m getting help. I mean they want me to be ok, but that’s about all they really care about. Although I had that realization it still hadn’t clicked that they also don’t really want to know about my current pains and issues. So, I would still talk about them. Like today. I’m in such a fibro flare. I’ve been having issues the last few days and every day I’ve gotten worse. My flare is worse today than yesterday and will be even worse tomorrow than today if I don’t get some rest. So I’m happy I’m off tomorrow.
It’s so hard to explain what I’m actually going through. Everything from head to my toes hurt. I feel ach’s, cramps here and there, numbness, tingling, brain fog, exhaustion, emotional, tired,… ect. Bla, bla, bla….Best way to explain is to say that I feel as though I have the flu, But we know I’m not that lucky. I wish that’s all that was wrong with me. Ugh. I’ve followed all my medication directions during flare up’s. (I have different flare up directions to follow from my doc.),but a big helper to calm my flare is to relax. Relax, relax, relax. Which I had to work the last couple of days and we had our Easter holiday. So family things going on. Which I love, but I have come to learn that relaxing does more for my fibro than I had ever imagined possible.
Anyway, I had then realized nobody really want’s to hear about my suffering either. Which does hurt my heart because I already feel so alone and scared because I actually am alone in this fibro world. I always wish I could like put a blanket over the people who love me that would let them know what I feel for a day or even half of a day, but something so that they really know. Like a Harry Potter fibro cloak. Especially because they don’t even ever seem to care that I’m in pain and or hurting. Nobody ever seems to acknowledge that I’m hurting and suffering which hurts me so much. Makes me so sad and lonely. Don’t get me wrong because sometimes I get some kind of act of care, but not often. and sometimes my daughter will out right get annoyed at me for asking for help and mad once I demand it. So I thought Maybe I should write my fibro experience in a blog. That hopefully I can also help someone and or teach along the way. So I try not to talk about my fibro issues so much anymore and just write about it. Well I guess I didn’t realize I still do. My daughter who is so rude told me that she’s sick of hearing about how my clothes don’t fit me and I can’t find nothing to wear. That I talk about it every single day over and over. (Which that’s due to my recent weight gain because I quit smoking last July.) Also that she’s sick of hearing about my fibro over and over every single day and that it’s all I talk about all day every day.Her little mean attack started because I had said I don’t feel good and she replied with ugh, I don’t care and then she went on to tell me what I wrote above. So of course I cried. That really did break my heart. She then has the nerve to ask me whats wrong. I thought Really??? although I didn’t answer her. I just came to my bed room. Then I remembered that’s why I started the blog. To help others and to not drive the people around me crazy. So here I am. I truly hope I help at least one person.