A low is creeping in…

There is another low coming for me. A tidal wave of negative. So here we are again at the keyboard to spit it on a crowd. Cut it open and let it bleed. I have a lot on my mind so lets go piece by piece in putting this part of the masterpiece together. This post needs to address the biggest force that brings my lows….pain.

The third wheel of all my relationships and the heaviest weight I am forced to carry every single day of my life. Let me go over briefly what pain I am referring too so new readers are not lost. I have a nerve tumor in my back, I have a tarlov cyst in my back, I have anklyosing spondilittis or A.S, I have fibromyalgia or FM, and recently I found out I have a heart problem.

Today I woke up to my left shoulder throbbing so bad I had to cry. I am forced to sleep on my sides because sleeping on my back paralyzes me from waist down due to the tumor next to my spine. I had to wrap up in heat, put on that wonderful smelling perfume called Bio-freeze, and medicate.

The shoulder has been a bigger problem for almost a week now. My shoulders always hurt but lately it has been especially bad. It very well could be from my A.S and if that is the case there is nothing I will be able to do about it. A.S is a progressive spine arthritis but also affects shoulders, rib cage, hips, knees, feet, it can cause lung and heart problems. Even though the shoulder has been a major source of pain for me the past week I have been able to push through it and go to work.

Ah, work…the one place I feel normal. The one place I have found that I can be myself completely and I’m accepted. Not only am I accepted but I am loved by many. I am very much in love with my job. I drive a school bus for those who didn’t know. My coworkers brighten my day. Even though they know about my medical problems they look at me with eyes of normalcy. They don’t look at me with pity. I know I am blessed that the job fell into my lap when it did. My students are absolutely fabulous! They brighten my day too. I can’t help but smile when I pick them up. They are very attached to me and the feeling is mutual. I think they are all going to grow up to be outstanding individuals. When I first took the job there were many times I was ready to throw in the towel. It is very hard during the winter months for me to physically do the job, but the kids I drive around have made me feel like such an important small part of their lives that they have actually helped lower my pain threshold.

I know that if this job had not come to me I would have killed myself. I was at the lowest point in my life when I was hired. I was pushing 200 pounds. I had been disabled and stuck at home since 2005. I lost all but two of my friends because I could no longer go out. I was being treated poorly by my husband. I had no support at all. I spent most nights crying myself to sleep. I spent most of my days orchestrating an easy way to leave my children, by me killing myself. I wrote letters saying good bye to those who truly meant the world to me. I wrote letters of apology to those who I have hurt throughout my life. It was a scary low. It was the first time in my life that I actually felt helplessness. I NEVER want to be back there again. When I say my job saved my life…I mean it literally.

I met my best friend at this job. I am so in love with her as a person that I couldn’t imagine my life without her in it now. She is my angel…and she is now my family. I love her very much.

Now getting up to start my day is truly a war for me. I have to fight through the stiffness to get out of bed. I have to fight through pain in my feet to walk into the bathroom. I have to cringe through the shoulder, back and hand pain to turn on the faucet to the shower. I have to cringe through the pain of stepping over into the tub to take my shower. I struggle reaching the body soaps, shampoo, and hope I can get them opened easily. Most mornings it isn’t so easy even with them strategically placed, which they are. A 30 minute super hot shower usually helps with the stiffness for about 20 minutes. By super hot, I mean hot enough to turn my flesh pink with a hint of red. I fight with pulling the shirt over my head, the jeans are causing excruciating pain as I bend to put my feet into them. The button and zipper are a nightmare for my hands.

So 20 minutes of relief has long passed and I have brushed my teeth but now have to combat the lower cabinet to bring out my make up case, hair dryer, and hope my hands will allow me to open my hair products and body sprays. I slowly walk to the kitchen to attempt to get my coffee mug ready. My daughter has already set up coffee pot because I have a hard time setting it up. The water is too heavy for my hands, the coffee is difficult to open, and my mug is set there with lid removed because well I can hardly remove it myself. Depressed yet? At this point in my morning I am not…yet….

I sit to do some heat therapy now in my recliner. The easiest chair for me to get out of. I wrap my back with heat, then wrap my neck and shoulder area. Ah another few moments of relief…..

I carry my coffee mug into the bathroom with both hands to prevent dropping it to continue getting ready. I take my medication with some coffee and have to fix my hair now. Raising my arms above my head feels like I am trying to lift 100 pound dumbbells over my head. The burning muscles begin from neck, down into my shoulders, radiating down my entire arm length in both. Depressed yet? …I am…at this point in my day I am starting to feel very low…

I got my hair done, ear rings in, make up is on finally, and now another battle to fight. My socks and shoes! I sit down because I can’t bend over to put them on like I could 15 years ago. What use to take less than 2 minutes…now takes 10 or so to complete. Another battle I’ve won…only to have a staircase to contend with.

My feet are killing me more with each step. Holding onto the rail going one step at a time with the crackling sound of my knees and pain from knee into my shin with each step slowing me down in this mission to get to work, I fight on. At the bottom of the steps I have a few more battles to get through…in the winter, even more with snow pants, and hat etc. The few I have now before winter gets here is my purse, coat, the door, and the car. The coat is the easiest battle. I have to cringe through more pain in the shoulders to get it on along with burning in my arms, and neck. OK battle won! Coat is on and now I just have to put my purse on one of my painful shoulders, grab my keys and turn that door knob to get into the garage to the car. The door knob is NOT going to win. I bite on my lip as my hand wraps the knob to turn it. My fingers are aching so bad I want to just let loose but I don’t. I HAVE to get to my car.

YES! I got the door open and was able to close it. Battle won! I start feeling accomplished at this point in my day…just briefly though…I walk around the car and realize this is the toughest thing I do at this point in my day….this battle reminds me everyday just how sick I am…getting into my car.

I fight to get the car door opened. SUCCESS! Now toss my purse hard enough to land in the passenger seat because bending over the driver seat to place it is not an option for me anymore and opening two car doors is not an option anymore either just for a purse. By this time I am breathing hard…feeling my heart starting to race and my entire body hurts. Now I have to get in…thankful I have a Jeep now so at least I don’t have to bend lower to get in though the Jeep is difficult too. Ah, bending to sit at the steering wheel I can feel the tarlov cyst pressing against the tumor…I can feel the tumor starting to pulsate from being pushed by the tarlov cyst….now I start to pray….dear God let my medication kick in and please be with me Lord in my pain…help me stay positive, happy, and not angry over these trials…please help me get to work safely so I can be a positive part of the kids day…help me be a positive force in my coworkers day…most of all Lord help me with my addiction, please help me stay sober today, and thank you for all you do for me…amen. ((I am a recovering opiate addict))

Yeah that is a normal morning for me….and I haven’t even covered the parts when I actually get to work. It is so exhausting. It is very hard not to roll over and just give up…it exhausts me so much…it has changed me forever…in some ways it has been wonderful change…but other ways it has been a scary secret of wanting to die, thoughts of ramming my car into buildings, thoughts of jumping off bridges, thoughts of stepping out in front of a driver….a loneliness that makes me want to just climb inside myself and disappear from the public and family…a scary shadow following me daily urging me to find some opium…or oxycotin…begging me to find it so I can feel good for just one day…a whisper in my ear telling me one day won’t hurt…two won’t hurt…come on….someone has to have them….just ask…a whisper reminding me just how good it felt when I was high on it…a craving in my gut for that euphoric feeling that opiates give you…

The low is creeping in…as it normally does…and it has me sitting at the keyboard once again…exposing my scars…my flaws for all to see…for all to use if they choose too…you are a witness to…me being painted blue…by this strange thing we call life….a masterpiece in the making.

Living with chronic pain & being a recovering addict = chronic battle

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.

 

Neurostimulator- health update

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.

Been gone so long. Update on me & my FNL w/Pancreatic cancer

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.

Writing through a fog…

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…

God Bless!
JO