Category Archives: Fibromyalgia
Some days I get this overwhelming feeling that I will not survive the day I am faced with. The feeling comes from struggling everyday with chronic illness, pain, loss, and insecurity in me.
Everyone around me, including my husband and children, never really get the internal person I am. The people that surround me see this strong, happy, enduring woman who lets her ambition drive her in everything she decides to take on. In reality though, there is this other woman who lives deep inside that rarely gets seen. This woman who lives deep inside is a scary one. I do not let her out very often for fear it will be used against me. Perhaps this is because my entire life things have been used as weapons against me. I have serious trust issues!
In all honesty I feel alone most days. It isn’t an alone that is repaired by having people around me either. It is hard to explain the loneliness I feel on a daily basis. To have success in conquering it I need to understand it and I do not. I find myself ignoring it most days by keeping busy. It is a temporary fix to a serious long term problem. Eventually I get to a point I can no longer ignore it and keep busy. It becomes so prevalent that is distracts me in many ways and it exhausts me. I eventually write as some way to alleviate it. Again I use a temporary fix to a long term problem. I know it is long term because I have dealt with this loneliness since I was a little girl. I have been a sick person my entire life and I believe this is where it originates. It escalated after I lost my dad at age eighteen. Every loss after that little by little it got bigger, and now with the loss of my lifelong friend, Andrew, it seems even larger than ever and makes me wonder what happens when it becomes so big I can no longer carry it around. It is a frightening to me because most of my life I have struggled with suicidal thoughts.
I have thought a lot about suicide lately. I haven’t thought about it as in I’m contemplating my final exit, but thinking about all those I have lost to suicide over the years. I also have been thinking on Robin Williams taking his life. I wonder if they felt the same way I feel with loneliness and eventually just decided to not fight anymore. What made them finally give up? Did they feel something else that I do not feel? Will I just end up like them one day? Will I be successful in this fight and be able to cope? When I think about Robin Williams, one of the most successful actors known, taking his life, I worry that if a man of that stature cannot handle things, what makes me think I will be any better. I am not financial set up like he was. I do not have a stage of the magnitude he had access too, to help him alleviate his worries. These are just some of the things I think on and not the darkest of them either.
Sometimes I find myself wanting to shut the entire world out. I find myself just wanting to be all alone so that I do not have to deal with anything outside my pain, illness and depression. My stuff is heavy enough without adding worldly things on top of it. It gets hard to work, parent, love, welcome, and interact.
Some are probably wondering if I have a relationship with God or a higher power. I do and maybe that is why I have made it as far as I have in my life conquering all the terrible events that have happened and demons that I carry. Maybe that relationship is the strength that keeps me going towards success against the suicidal thoughts and loneliness I feel. I would like to believe that I would never end my life on my own. I love life, I do. I love being a mother to my growing daughters. In the back of my mind I think about those who have actually taken their lives and think well they probably loved their kids too. They probably loved life too. What if I get where they were in their final moments? How do I prevent that? Can I prevent that?
I have questioned heaven since my dad passed in 1996. I wonder where it is he rests now. Is he just gone or is he really somewhere living a new life? Is it heaven? Has he any recollection of his life he left? Does he know I am here still? Does he see me? Does he live pain free and cured of all ailments? Can he hear me? Why can’t we communicate if these things existed? I would love it if it were all true, the story of heaven and angels silently flying around us, remembering who we were to them, but I have serious doubts that exists. I do not ask these questions just about my dad but everyone I have ever lost. I guess this is where faith comes into play. Faith is a very hard thing to understand. How do some people have such strong faith and others have little to none? Why do they differ so much? What is it about the person who has strong faith that lacks in the other? So many questions with no definite answer make spirituality and religion the most confusing thing I have ever seen.
Do I need to remind you I have serious trust issues? The circle of people who surrounds me closest knows the most about me, but still they do not have a complete picture of who Rachel really is. I am not sure they ever will. I have only had two people I can say knew me completely. Those two people are gone now. It isn’t that I don’t want my closest circle of friends to know all of me, I do! I just find myself struggling with allowing them to know my every thought because I have let people in who have burned me deeply. So that leaves me with thoughts I do not share with anyone at all. I hold them in and lock them away inside. So internally I struggle daily on my own with those secrets. Eventually I come here to my keys to release some of those secrets because most who read this blog do not know me from Jane next door. I am somewhat protected here. Even here I hold back because of the people who read this DO know who I am have used what I put here against me and it is very hurtful. I have no place to be completely open about WHOM I REALLY am inside.
The best example I can give you would be the loss of my friend Andrew. It never crossed my mind that I would go home to bury him. I always imagined he would out live me. I always thought he would just be there. I can’t share some of my feelings with anyone because some it would be hurtful maybe to others. Maybe it would be wrong to say it out loud or maybe it is wrong to feel it. Maybe I shouldn’t miss him as much as I do. Maybe if I say it out loud it will be a bullet used to shoot back at me. Just some things I see as complications that I am not ready to tackle so I hold it all close to myself. I also wonder what it all means. Why has losing him been such an impact on me internally? It makes me question so many things.
Another example is my struggle with sobriety. I cannot even release thoughts on that here out of fear it will be used against me.
Some are probably wondering why I do not just keep a private diary. The main reason is I want and need feedback about my thoughts. I need people to interact with me and tell me if I seem crazy or if I seem to normal. I also wonder if my thoughts are normal. Do others have these battles etc? It feels good knowing others struggle with the same sort of thoughts, and problems. It helps getting advice too on these subjects.
I think I worry too much. I worry about being sick. I worry about my health preventing me from being successful in college. Am I biting off more than I can chew? Will I have the support in my life to finish and not give up to quit once I start? I need peace. I want peace.
I am finding it harder to find peace. I use to be able to go out into nature and have peace. I do not seem to get that anymore. My constant worry and thoughts seem to always be there. They never seem to quiet. It has gotten so much worse since Drew has passed. I loved him and I have no one who would really understand what that means or why it is that way. I miss him every day and if I would say that out loud it would be used against me I know it. It might even get used against me being put here. I feel wrong for loving him and missing him and that is not fair to me. He is gone forever. There is no chance of me EVER hearing his voice, getting his advice, joking with him, or telling him how important of a friend he was to me. So this is just one thing I am alone with.
I do not write posts here very often. I am guarded with my thoughts because it can be used against me; it has been used against me. Yes, I have serious trust issues.
I want to talk about being sick and a recovering addict today.
Let’s talk about being sick first. I just recently had a rheumatoid doctor diagnose me with Anklyosing Spondylitis (A.S) and well though we have thought for a long time I’ve had this disease we waited as long as we could to medicate me with immune suppressants. I came to a point in the disease I had no other choice but to start on humira. It is an injection I take every two weeks. I give it to myself now.
I was waking up so stiff I needed help to get out of bed when I finally went to doctor for medication for the disease. It became horrible. I have been on humira since May of 2013. I have noticed considerable change in my body with the medicine. It has been such a change that I wish I had gone on the humira sooner then what I decided. I avoided the medicine out of fear that it suppresses the immune system. I am still concerned about it making me sick with cancer, or flu like stuff one day but the relief I have received thus far is worth the risk.
I have so many health issues. It wears me out. It is exhausting being so sick with so many problems. None of which have a cure either! It is a daily battle for me to get out of bed and carry on my day as normally as I can to fit in to society. Some days I just hold myself up at home because that is all I can do those days. I have a tarlov cyst that is a constant source of pain. I have a neuroma that is a constant source of nerve pain, burning sensations, and fatigue. I have fibromyalgia which has become a nightmare of burning muscles, weak muscles, over active sensory problems like over sensitive to light, sun, noise, smells, and motion. Now on top of those things I have A.S. Which is a progressive arthritis of the spine and joints. The A.S leaves me fatigued, pain in the back, knees, elbows, feet, hips, neck and lower back. It is so damn exhausting!
There have been many nights I have thought about ending it all. To be honest the only thing that keeps me around are my beautiful daughters. I love them so much. I love being their mom. They are why I live. I know it is sad to read that I am suicidal and probably makes you wonder how stable am I to even think these things…well it might not be normal to think about ending it for you…but I know living with chronic pain the way I do makes it very normal. I am not a risk to myself because I have found something to live for even in the darkest hour of my pain, illness and fatigue. My kids. I have not found a way to stop the ideas from creeping into my thoughts at times but I don’t act on them. I don’t think I ever would for a few reasons. The biggest being my wonderful daughters. The second is my faith in Christ. I know I suffer these ailments for a reason. I am not sure the reason yet in my life but when it is all said and done it will be clear why I had to live my life the way he chose. The final reason are the friends I have today. The support they have for me is like coming up for fresh air in the middle of an ocean.
I try very hard to stay positive. I wake up and tell myself something positive and remind myself through the day that I have so much to be thankful for so do not focus on the pain. Some days this is so hard to do…some days I am so tired from fighting against the pain that I have no energy left for anything and that to breathe takes everything left in me.
Living a life like mine isn’t easy. It doesn’t help when you don’t get support or understanding from those around you either. I know I have had friends think I didn’t care for them as much as I say because I don’t hang out with them often. I don’t call them a lot. I am not sure what to do about that. My energy reserve is very low and most of what I do have has to go to my two kids first. Usually I have none left to share with anyone. When I am working it is even worse. Hell my kids then get very little of my time. I work, cook dinner and go right to bed only to repeat this same routine five days a week. I get a summer vacation when school is out so that is a nice break for me. The summer break allows my kids to get more of my time and energy. Unfortunately my friends do not.
Is that fair? No I don’t think it is. I only know that I can’t change the way I feel. I take one day at a time. I hope I have friends now that understand this part of me and know I do love them regardless of the time we spend together. I have lost lots of friends over the years because I am sick. They got pissed off I couldn’t do what they wanted me to do and quit talking to me. The friends I have lost I know now were just users. They were only my friend because I could do something for them at the time. When it came down to the point in my life I couldn’t help them they weren’t interested. Sure, it hurts to lose friends in the moment, but as I have had time pass I have come to realize they were really never friends. They were what I call users. We all have these in our lives at some point. Some hang on to them longer then they should if you ask my opinion.
Anger is a huge issue I have. I fight the anger demon daily too. I get so pissed off at my circumstance. It eventually leads to loneliness. I feel angry that I’m sick and can’t do the great things I want to do then I end up feeling lonely because I realize in this battle I am truly alone. I am the one who has to walk with the pain, sleep with the pain, wake with the pain and no one knows this but me. It gets hard for those around me to understand because I don’t look sick. I look like a vibrant 35 year old woman but my looks deceive you.
The pain is a third wheel in all my relationships. It gets pretty damn exhausting carrying this wheel around everywhere I go. It interferes with friendships, my marriage, my relationship with my children, hell it even interferes with my own self on a daily basis. It is crazy I have to wake up every single day and have a plan on what I will spend my energy on. I have some energy for a shower, some energy for my kids, some energy for cooking dinner, doing laundry that day, and energy to give to my husband when he gets off work. Hell most of the time I have NONE when he gets home and it is very frustrating. It gets even more frustrating when he doesn’t seem to grasp understanding of what all is wrong with me.
I am also a recovering addict. The health shit I carry around interferes with my sobriety on a daily basis. I am an opium addict. I became an opium addict in 1995. I left home to clean myself up in 1999. I have had one relapse in sobriety and that was in 2006 after my first back surgery when a doctor put me on Oxycontin. I abused the pills for about a year and in 2007 I went cold turkey again and have battled everyday since to stay clean. The Oxycotin battle went well into 2011. My addiction did not start with pills though. My addiction started with smoking it in a pipe. I think about opium every single day at least once. I think about how numb it makes you and how you feel no pain on it. I think to myself often if I could just smoke a pipe of opium I’d have no pain at all and could be normal…being a chronic pain patient makes being a recovering addict even harder to do.
Right now I wish I was high. If I were high right now I wouldn’t feel the pain in my lower back, my hands wouldn’t be aching, and my neck and shoulders would be completely relaxed. These are just some things I think about on a daily basis. What stops me from acting on these thoughts? Well simple….my kids. Again they are the reason I try to be a role model. I want them to have the best life possible and grow into responsible, caring, normal adults and that requires me to stay clean.
I am very fortunate. I know many addicts don’t get away from the grasp of opiates. Hell most end up heroin addicts. I know this. I’ve lost friends to this trend of opiate abuse that lead them to heroin. If I had not left home when I did I probably would have been led to heroin too. I would have used it to medicate my pain away and would have ended up strung out on it and eventually killing myself. I know this without a doubt. I know once you do heroin it grips so tightly that it is a miracle to get away from it. I take one day at a time.
I avoid opiate users. I have had doctors note my medical file to avoid long term prescriptions and if ever prescribed it must be very small amount and there must be no other options. I am glad I was educated enough at the time I left my hometown that I knew to have a successful shot at staying clean you had to change your entire life scene. That is what I did and I think that is why I was successful in getting clean and staying clean for so long. I honestly think I would not have relapsed at all had I not been put on Oxycontin for pain. These things happened for a reason. I am not 100% sure the reason but I know Christ has one. Maybe it was to make me a better mother then what I would have been had I not done these drugs. Maybe it was to show others that it can be done. YOU CAN GET CLEAN and stay that way. Maybe I became an addict because I was suppose to leave my hometown so I could have a shot at a better life. I don’t know. All I know is I am thankful. Even when I wake angry about it, even when I feel so lonely in it all, even when I think that things would be better if I ended it, I end up where I belong. I end up being thankful and remembering why I carry on. I remember how I cleaned myself up and understand that in itself is a remarkable feat.
I know having chronic pain for the rest of my life is not going to be easy. It hasn’t been easy yet. I know living with my pain leaves me very vulnerable to relapsing again. These things I make sure I don’t forget. It keeps me vigilant against the monster lurking just around the corner in a pill bottle, a pipe, or powder. I take one day at a time and pray often. I love my friends that understand my problems and are there to support me when I need them. I love them for understanding that even if I can’t hang with them often I think of them often. They are the other reason I stay clean and carry on.
Everyone has their own story to tell. Everyone has their own struggle to fight. This is just a piece of mine. Thank you for reading. It felt good to let it out.
I finally had a neurostimulator surgically put into my back to stop the nerve pain down my legs. The pain was so bad I could barely walk anymore. I looked all over for someone to help me. It took the mayo clinic to put it frankly to me about my situation. They told me bluntly that there is no surgical fix to my problems and that I’m looking for something that isn’t going to be found. They said the best advice I could take is search out a pain clinic and see what can be done to manage my pain.
I did just that! MAPS were the place where I’d find my ability to walk again with no more nerve pain shooting down my legs! After trying injections with no long-term success in stopping the nerve pain my last two options were laid out on the table for me. The first choice was a morphine pump, which I was not going to take no matter what. The second choice was a neurostimulator that would surgically put into my back that would trick my brain in receiving tingling sensations before the pain single was sent. I had low hopes.
They set me up for a trial to see if it would be successful. I was set up for a week to see how it would work. It was FABOULOUS! I couldn’t wait to get it permanently put in! After trial was a success we set up the surgery date for it to be put in. It was done in February of this year. Since the implant I can walk now with no nerve pain. I can sit for longer periods of time without having to get up every ten minutes due to pain. I am still limited in many ways but at least the nerve pain is completely gone now.
The implant should last five to six years. A normal implant would last up to ten years, however, I have to have mine on 24 hours a day, 7 days a week so that takes battery life off of machine and how long it could last for me. I am very pleased with the results of this implant. Technology is amazing and by the grace of God I can walk again! The machine also helped me eliminate many meds I was taking. I went from 12 prescriptions to TWO!!
I would recommend this option to others who have neuropathy, sciatic nerve problems, or any other nerve pain.
An update for my readers
Sorry it’s been so long. I’ve been busy with my oldest going back to school. Third grade now! I’ve also had some pretty rough days with my fibromyalgia and the tumor in my back since I’m still not on any medications for the fibro. The tumor pain is from over doing myself out back with my fall planting. I guess I still haven’t figured out how to pace myself.
We spent a week away from home last week. We spent most of that time in WI with my in laws. My father n law gave us some bad news. He said the chemotherapy he was on isn’t working and the cancer has gotten bigger and spread to his spleen and prostate. His pain is MUCH worse. The morphine he’s on isn’t taking care of the pain right now so this I know is VERY bad. He started a new chemotherapy this week in hopes it will prolong his life some but sadly it is soooo hard for me to be optimistic with this situation. I guess I am like that because I’ve lost so many to cancer and have no happy survival stories. I just pray every night that he is given the time he needs and that he is not made to suffer too long. I believe in prayer so that keeps me stronger then I think I would be otherwise. Faith keeps me above water.
I cried when we left. I am so worried about him. I feel helpless too and a part of me says to myself none of it is my place. I’m not his kid. I’m just his daughter by law. He has however always treated me great from the very beginning. Ten years I’ve been with his son and he’s never treated me bad. It is just sad to see someone you love go through such a bullshit thing like cancer. The worst part of it is no matter what he does he’ll lose like so many others….
I had to take a trip to Chicago while we were visiting the in laws. I was made Godmother of my nephew JJ. My husband was made Godfather. We are not catholic so it was a bit nerve racking in the beginning but turned out good. I’m a believer so I guess that is the bottom line. I believe in Christ.
It was a very rough trip for me though. I didn’t sleep and my pain level was extremely high the entire time we were gone. It isn’t anyone’s fault for that. I can’t expect everyone to have an outrageously priced mattress for me to sleep in. It did take me a few days to get my wind back. When I did get my wind back I over did it out back with my fall planting! Another two days to get back on my feet. Except this time I could not walk for two days. I can walk some today so I am thankful it wasn’t a long stretch of being bed ridden.
I have a lot of writing to catch on with the novel I’ve been writing for what feels like ages now. It is a slow process this book and I don’t understand why. I was thinking of maybe taking a breath from it and come back to it later but then I was thinking if I do that I will lose connection with my characters there…there is also the possibility of gaining more insight for my characters. Maybe I have too much mental stress right now to even think about putting out chapters. I just don’t know.
Right now I’m going to go and drink a hot cup of coffee, relax, and enjoy my toddler. Until next time…BE SAFE! God bless.
I’m writing through a fog here. Hell I live in a fog what am I talking about. I’m lucky to remember my name some days! I was asked for my phone number yesterday or the day before that (hell I don’t know for sure when it was now that I think of it) but anyways, I completely drew a blank! I had NO FREAKIN’ CLUE! I had to say give me just a moment, and it took me what felt like a lifetime to remember what the hell it was to give it to the lady. After that I programmed the number into my own cell phone so that if that happened again all I had to do was open my phone and access the first name in my list. Isn’t that sad? I was so embarrassed! I cried after I got off the phone with the lady because I felt so stupid that I couldn’t recall my own damn number.
I had been having problems for a few days leading up to that event with my memory. It’s fibro fog I know but it can be pretty damn scary. Sometimes it makes you wonder if you are forgetting shit for good. I panicked a lot when it hits me suddenly. That just makes it worse. Lack of sleep is the cause. I am lacking some MAJOR sleep right now too!
I won’t even recall writing this in the morning I can promise you that. I wonder sometimes if this is some sign of early dementia! It really does freak me out at times the shit I can’t recall that I know I know. It is hard to explain to anyone who hasn’t actually been through it.
I’ve been very tired this past week. I had a cold for about four days and it really kicked my ass. I’m finally over it now but think it might rear its ugly head again since I’m not sleeping well.
I have not slept worth a damn in a few weeks so I guess it’s catching up to me again. It’s a cycle I’m getting use to. I will go to bed and wake up throughout the night a few times and at 4am I wake up and can’t get back to sleep so I lie there for an hour or so until finally I figure what is the fucking point and I climb out of bed aching to hell and back. I get up for a few hours suffering with pain, waiting for my pain reliever to ease my aches and I’ll fall asleep again for maybe an hour. After that I must be up for the day because my little one is up for the day then.
Now that my oldest is in school I probably won’t even go back to sleep when I get out of bed around 5am or 6am since she gets up at 7am anyway. I’ll just wait until after she goes off for the bus and hopefully catch my hour before my little one wakes for the day. I don’t use sleep aids this time of year because I want to be able to get up and function with my oldest daughter.
I went off the lyrica, and I quit taking cymbalta a few months ago. They were great for relieving some of the fibromyalgia ailments but with the tumor in my back I couldn’t take the side effects that came along with them. I HAD to quit taking them sadly. I gained over 40 pounds excess weight I just can’t carry simply from those medications. It is taking me a little longer then I thought to lose all that weight. I can’t do exercise due to the tumor in the back so I have to be more patient and work a little harder to lose it.
So far I’ve lost 15 pounds. I couldn’t believe I got up to 189 pounds on those medications! Most of my life I had never weighed more then 125 pounds until right before my back surgery in 2005 I was ordered by my doctor to gain enough weight to put me at my normal weight. I was 20 pounds under weight then. I did what they asked and got myself up to 140, which is what I am supposed to weigh with my height. After surgery I was diagnosed with FMS and put on some wicked medicine lyrica and cymbalta were two of them. They just packed on the pounds within ONE month I was blown up like a cow.
I have been setting small weight loss goals so that I’m less likely to be discouraged. I’ve seen a huge difference already and I really am excited about getting the other 30 pounds off. Not only will it benefit my heart, but also it will ease some of the back pain I have from carrying around all this extra weight. It will relieve some pressure on the tumor so that pain will lessen. Not to mention I will feel sexy again!! I’m already starting to feel sexy again…it has been a while.
I’m not sure what I am going to do about the winter months. They are a nightmare for me. They were even a nightmare for me when I was on lyrica and cymbalta so I can just imagine what it is going to be like now that I’m no longer taking them. I have to find a solution soon, winter is right around the corner for me here in MN and they show no mercy for anyone.
I wish I could just pack up and move south! Unfortunately that isn’t feasible so alternative roads must be traveled right now. I do plan to get the hell out of MN though. I can’t stay here with the winters. I’m hoping next spring my house will be updated enough and the housing market will have come back enough to at least allow me to put my house on the market. We’ll see what the future holds. Deep down I want to move to South Carolina. I’ve ALWAYS wanted to live there close to the beach but that is probably NOT going to happen. You have to go where you can make it financially so it might be southwest instead of southeast. I wouldn’t mind moving closer to Louisiana so that I’d have more of a chance of seeing my nieces there. I miss my old friend Kim too, their mother. I had some great times with her.
Right now though I have to come up with a plan to survive this MN winter.
I am going to try some supplements and see if they can help out some. Most medicine doctors want to put me on for fibromyalgia have major side effects that I can’t take, and the main one is weight gain.
I have to get ready for a road trip soon. I am going to be a God Mother to my nephew. I’m excited to see him and my niece. They are darling children! I haven’t seen my niece since she was just a baby and now she is two. I’ve not even held my nephew yet! The downside of living out of state from family is you miss the children growing up.
Since my pain level has been so high lately I’ve been trying to listen to Enya as much as possible to keep me as relaxed as I can. Been using heat when feasible and meditation. Most of the time though with that damn tumor it doesn’t work.
I’m so tired now I think I need to try to get to some sleep even though I know I won’t. I will still lie down to relax my muscles. Until next time…