Category Archives: health

For the love of…

brokenheartnow

I have been going to counseling now for about six months or so with my husband. The main reason for going was my marriage was over, or so I thought it was. Maybe it still is…this is what we are trying to figure out in therapy. We were in crisis mode when we decided to go. I had fallen out of love with my husband who I have been with for fourteen years.

It was not just one thing he had done to me that brought us to that point. It was years of neglect and many stupid things he has done, and things he said that built up and brought us to that crossroad. Through the years I tried to explain to him, I tried to show him, I tried to convince him, hell I even asked him to go to couple counseling with me. It took me to tell him I wanted a divorce to finally shock him into going to counseling. I was not impressed. I had been so detached and neglected I did not want to try counseling at this point. My thought was, “oh, NOW, you want to try counseling, what about last year when I asked?” When I mentioned therapy for us the previous year I told him I was feeling very insecure in our relationship and asked him to go. His reply to me at that time was, “You do need therapy, you are crazy not me.” So you can imagine how I felt with him, now ,after telling him I wanted a divorce, he was willing to try this counseling thing.

The first month I was not impressed. It took a long time to bring down the wall I had built. It took a long time to attempt to replace anger with something healthier. I still find myself detached from him quite a bit. Honestly I am not sure where our future is leading us…I agreed to do a year of therapy with the counselor because she said it would probably take that long to get us where we should be. So I plan on keeping my word because that is what I do. I am loyal.

I’m not fighting the therapy like I was in the beginning. I am letting it sink in and I am taking the advice on how to get back on track. I am doing this because I have seen my husband trying to make things better. He has realized many things through therapy…though I think he has a lot more to learn…I will try to be patient in this journey.

A huge part of me is scared that I will never feel attached to him like I was just a few years ago. I love him but I still have doubts about being “in love” with him. I have tried to find the main trigger that creates this detachment in me. I have figured out that it is the past crap he’s done, said and the years of neglect that remind me he is untrustworthy. I am not exactly sure how to get over that. I am not certain he is doing anything to remind me of that or if he is doing things that subconsciously remind me. That will be my next session with therapist.

I understand that love grows to different stages. I understand that the newly wed love stage will most likely not return for us but I know passion could if we could just stay attached. The problem with that is I can’t seem to stay attached to him and I am not 100% sure I truly want to. He is indeed untrustworthy to me. I mean he has said things to me that are awful. Was he lying when he said those things? He doesn’t believe those things now because why? Because I was actually leaving this time. See what I mean?

I am not claiming I’m perfect here. I know I’ve called him an asshole over the years. I have told him to fuck off more then I can count. I will tell you though I have NEVER said something so harsh and hurtful to him like he has done to me. This is where we still have serious problems…

I can’t forget the times he has told me I am crazy. I can not forget his reply when I wanted to go back to school was, “you can’t even clean my house the way I like what makes you think you can go back to school”, yeah, that was my breaking point. It was shortly after that I finally just said I wanted a divorce.

That was around March of 2012. It all came together right before I got hired at my current job.

I have noticed lately he is more likely to slump back into old habits. When he starts to do that I immediately detach. When I say detach, I don’t mean minor isolation, I mean detach as in putting myself on an island with no way onto that bad boy. It is very hard for me to reattach too. I understand I detach so much because it was many, many years of neglect, abusive spoken words, and snipping away at the trust. I am not sure we’ll figure this out but I am willing to finish out trying to do so.

I am not happy with him like I think I should be. I am not even sure I ever will be again…I do love him a great deal. He is a wonderful father. He isn’t a bad person. We have had many great memories. I wouldn’t wish anything bad on him either. But, I use to look forward to talking with him, going places with him, I use to respect his opinion…these days I still don’t give a shit either way…I try to give a shit but deep down I don’t most of the time…a huge part of me feels guilty for those feelings but I just don’t know what to do…will that change with continued therapy? I don’t know…stay tuned.

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

sickandtired

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.

addiction

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.

Dear whoever cares…

I have had a few rough days here. It took every ounce of energy just to breathe. The doctors tell me its fibromyalgia I just still refuse to believe I have that. It is bad enough dealing with the tumor in my back without having some other crap.

I’ve been having some strange dreams lately. I worry they are trying to warn me of some impending doom…they certainly feel that way when I awake from them. I feel such a dread over myself that I can’t help but use a few moments to clear them out of my mind. I hope it is only stress I’m taking to my dream world and not some serious warning I am failing to see. The dreams have been going on for a few months now and they seem to be getting more intense.

How fitting to be listening to Zombie by the Cranberries as I started to write this entry…

A few times in the past few months I have felt like a nervous break down was just one moment away. I’ve had a hard time with my father n law being sick with pancreatic cancer. He is at the nearing end and I’m not sure how to be the rock for my oldest daughter and husband when the final moment happens. I worry about him suffering with pain and I worry about what his wife will do when he’s gone too. What about Anna? I worry about these things constantly these days. It feels too close to a very difficult loss of my own over my dad who passed away with cancer in 1996.

I’ve had a downfall over changing my career. I found out that disability will cut me off if I try to attempt to go to school for photography. I am a writer, nothing special though so don’t get too excited. I’m not putting out stuff I use to dream about putting out. No New York best seller, and not even close to the Pulitzer Prize. I have big dreams, big goals and it seems I’m stuck being mediocre at best. I wanted to try to start something new like photography in hopes 2 find the thing I’m excellent at and something I can try to do with my disability. So I’m stuck writing mediocre novels, and poetry I’ll never make dimes writing.

It really upset me because I feel like I’m living this life of a stranger. This life I am stuck in isn’t mine. I am a volleyball player, hip-hop dancer, and a karaoke singer, full of life and energy to do shit with my family and on my own…however that is a dream life for me. I have been disabled since 2005 and I still can’t seem to be the new me. I walk with a cane most days and I still can’t get over the fact I do that…I just can’t accept the limits I have now…why do I have to be limited? Of all people…I’ve always been ambitious. I am a determined woman with goals set all the time. Any idea what it does to me when I’m hindered? I am very unhappy with now in my life.

Don’t get me wrong I love my family and that is not anything I’m depressed about. I just wish I could contribute more to my family…I would feel more accomplished in being able to do so.

If only they would have done the MRI in 2001! I didn’t have healthcare at that time so it was a test they avoided to do…they did X-rays which didn’t show the tumor on the nerve. So from 2001 until 2005 the tumor grew and became inoperable. Now I’m left with the life I am forced to live with no chance of EVER being any other way. When it gets to the point where they will have no other choice but to remove the tumor I will be left in a wheel chair and colostomy bag. I blame the government for this situation because if there were some sort of health coverage I would have had access too the MRI would have been done and removed before the nerve braided throughout the tumor. Bastards!

I was 22 then…

Sometimes I even push myself to try to be normal and then I hurt even more afterwards. I push myself to get out into the garden in spring and summer. I push myself to do what little housework I can do but pay for it later. I’m limited to how far I can even drive. Long trips in the car are very difficult for me due to the back pain. So forget about the road trips I use to take…vacation drives I use to dream about like seeing Yellowstone. That is over for me and boy it really depresses me to a level I’ve never known.

I try to write it out, and try to stay positive but in the midst of my life it’s hard because everyday I’m reminded how limited I am now. Every move I make I am reminded what has been taken away from me.

I pray that God gives me strength to change the things I can and accept the things I cannot. I need him because I’m close to something I don’t want to be close to right now in my life…

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.