Locked In My Head
My struggles with life, bipolar, and ankylosing spondylitisYou Only Live Once
I have had a few weeks to think things over. Things began rough but so far I am pushing forward! I am healthier and stronger than I’ve ever been! I have support and my own strength. I am satisfied in knowing I tried my hardest to work things out with my husband but he does not want to work this marriage out. I have had my closure. He is happy with his life the way it is and I want bigger and better things in this world. I am out looking for work every day and hopefully will find something soon. Christmas is coming but I have hardly noticed, yes it’s a little sad considering I have a daughter but I have to move through the holidays this way. The holidays were always big for me but this cannot be that way for me this year. He ruined Thanksgiving for me and maybe Christmas but I am moving forward. Our anniversary is this month but I am trying not to think about that. No need to worry about something that is going to be trivial at this point and from now on. I think it will hurt around this time of year for a little while but eventually all wounds will heal. They say time does heal and they are right in that. I miss him and I probably always will but someone out there will treat me better someday and won’t abandon me and will always keep their promises. I will find that person. Even if I have to wade through a ton of bad eggs, I will find that special person someday. I am worth it, and I know I am a good person worthy of good things in this life. I may have issues but I am a good person and I know I am doing everything I can to stay strong and healthy. I have had missteps over the years but a lot has changed, maybe it’s the turning point in my life, I don’t know, but I know I can succeed at anything I do and I will. Now is the time. You only get one chance in this life. You only live once. So I am going to live it the best way I can.
I wish it was Enough….(Love)
No the answers never are easy- nor is life or the truth of it all. I spent the week up until Thanksgiving day in the hospital after a dreadful night. A night I will never forget though I was out of my right mind at the time. It still leaves an imprint. I fought hard in the hospital to get stable this time and to maintain stability and I had no one come see me. I had to search for friends to reach out to, someone to lean on for support out in the world. My spouse was bitter and angry at me and still is or rather is finished. I was told over the phone to move out with my daughter the day before Thanksgiving. I finally was able to pour my heart out to him and explain that I have an illness we both have been misunderstanding for a long time, I had learned so much more about it in that last week than I had ever known. I had worked so hard to fix things with myself but it was not heard. My tears poured for no reason but only to release them from my own body- my own release but I found no release. My heart was torn and is torn into a million pieces. Any pain I had suffered was magnified by a thousand. I couldn’t breathe and I still have yet to catch my breath. I don’t feel the desire to eat or drink, shaking and fumbling around this world looking through everything instead of at things or at people. I don’t see the upcoming holidays, I ignore them. I only feel cold and I feel the dark storm cloud over my head- it follows me everywhere I go. I don’t sleep and when sleep finds me I dream of his face. There is no reprieve. Then I wake this morning to cold rain outside which aggravates my AS in my spine and not only do I have pain all day in my spine but my heart hurts. My lithium keeps me from being tortured to death but I feel at times that one wrong step and I just might slip and all because my life has been put out of balance. My best friend and the man I love is gone from my life forever. There is nothing I can do to get that back now. I have to somehow move on and put my feet forward. How do you do that after 12 years together? When you are no longer yourself but a half of someone else? How does the other person move on so easily? I WAS happy with him. Just because I have depression doesn’t mean I wasn’t happy in my relationship. I loved and I loved hard- evidently too much. Now I am all but broken but still loving. I guess it was all my fault. I wasn’t good enough. Maybe one day I will be enough for the right person but I can only be who I am. He knew who I was when he met me. I would have never let go. Never. I love him. I don’t know if that will ever go away. I wish it was enough. And since you never let me have real closure- I love you, I always have and I wish you would have hugged me goodbye when you left me at the hospital.
10 Days… The answers are Never Easy
10 days… I don’t think I have really moved from this spot, in 10 days. Well I did go to one appointment in those ten days- to see the pulmonologist and that went ok. Other than that I do nothing but sleep. Sleep to get away from pain, physical and mental. It’s amazing what you can sleep through when you are extremely depressed. I only venture to other rooms when needed and get up to help my daughter when she needs me which isn’t too often now that she is older. I figure if I sleep then I can avoid the world and avoid my physical pain but in the morning I am at my worst, the pain is so bad i cannot sleep through it. I sit and cry that is when I am not holding my breath from the pain. My husband wakes briefly at 3 or 4 AM when I wake in pain and asks me, “your back again?” and all I can say when I am able is yes under my breath and then I manage to go to the living room and hold back tears on most mornings. If I cannot hold back the tears I end up in a sob fest for hours thinking my life is not worth living anymore because if my doctor doesn’t care about my pain, why should anyone else? I have to wait hours to even use the bathroom because the pain is so bad. So by the time I do my bladder and kidneys are suffering, probably the reason I have kidney problems.
I cannot fathom even getting up to make myself something to eat anymore, breakfast or lunch but I am lucky and my husband will come home and cook. I feel entirely guilty leaving that to him every day but I feel immobilized like I cannot move anymore to do anything. I emailed my psychiatrist over last weekend and was completely honest with him, even scheduled myself to see him last Tuesday but canceled at the last minute Monday night because i just had so much anxiety and depression I couldn’t go. He called yesterday wondering about the email and where I was yesterday. I didn’t answer the call because I avoid the phone and everyone now. I did however reach out and called his office this morning and I am waiting on a return call today, now it’s up to me to answer that return call, it’s killing me right now. I am trying everything in my power to not avoid the phone and be brave. There is no telling what time he will return the call but he is the only one that can help me through this. No one else can. If he even can. I am sitting and waiting to die and that just isn’t going to work. No one gets it. I am fighting terrible spinal and neck stiffness today and the pain in my neck is so bad it still has not gone and I have been up for hours. I want to go back to sleep to ignore it but I am trying my hardest to stick it out. I feel so… despondent anymore. No one gets it, no one cares and everyone assumes the answers are so easy. When they aren’t.
Deafening Silence – Secrets Revealed
It’s now 5:20 AM and the less you know the better. Someone has come in the night and stuck an ice pick in my back. Or at least that’s how intense the pain feels this morning. I am surprised I was able to get out of bed. Let’s just say I protested to God when I sat up that I didn’t want to- out loud. I have it sitting here staring at me. Just toying with me this morning. I cannot stand the pain anymore and it screams in my face take these and it will be all better. No more pain, no more suffering- physically or mentally. I asked my husband what would he feel if I took my own life and he said he would be … well now I cannot remember…. but I think he said hurt. He said somewhat like he would feel like it was his fault I was so miserable enough to do such a thing but I told him it’s not his fault my brain is wired wrong and it’s not his fault I am in constant pain. He cannot possibly begin to fix those things nor are they ever from him. I am anxious and agitated this morning. Wrestling with many thoughts on top of my pain. I don’t think I would ever be forgiven but it’s not something I would choose lightly either. No one knows my real pain except me. So, it’s now 5:30 AM and the demons have caught up with me. These things sitting here toying with me, these things are agitating me and I just keep thinking- what if one thing in one more moment happened and I regretted forever afterward? There IS no going back. DO I just want help? I don’t think there is any help anymore though. I feel like I have exhausted everything and tried everything. A secret kept within me for awhile now is revealed. If I wasn’t such an indecisive person all the time I am sure this decision would have been made but IS it a light decision to be made I don’t know. It’s easy, yes or no, give in to the madness or somehow survive the madness and find a way out. God knows I have been searching for a way out. He knows more than anyone. So in this deafening silence of the morning, before the sun rises, do I move to strike or wait it out longer… that is the million dollar question. Am I strong enough to get through more of this? It’s now 6 AM and I have played around too long trying to decide the right things to say. I wish I could reach out and use that phone to talk to someone but I know therein lies judgement from whoever is on the other end. what a waste- everything is anymore.
Quit – Give up-God given Free Will
I cannot do this anymore. I am done. Maybe some of you get it, maybe some of you don’t I don’t know. This is not getting me anywhere. The crying, the blogging – nothing. It’s not helping you and it’s not helping me obviously. But it seems as if nothing is helping me, I hope something is helping you. ~ I don’t wish these choices and feelings on my worst enemy that I have. I don’t know what else to say. I think I have said it all. I am a failure, just not strong enough like the rest of you. We never know what our future’s hold and God seems to give us plenty of free will to do what we want with our lives. The choice now, is what to do with my free will. ♥
Ankylosing Spondylitis – My Story Of AS
Who would have thought at 31, almost 32, I would spend ½ my leisure time out of the house using a wheelchair? Is it half? My journey with AS began in April 2008 during one of Georgia’s colder winter storms when we did not have central heat in our home. See, we are one of those families that still live in the poorer communities in the “darker ages” and we depend on other sources of heat most winters so ice storms are exceptionally hard on us. My first symptom was excruciating pain in my heel with a bright red color. Then my knee and elbow joined in just for fun. I managed for almost a week or two like this and couldn’t deal with the pain anymore so I asked my husband to take me to the doctor.
The doctor examined me and asked many questions. She asked about my family history, my symptom duration and severity and even about my past health issues. I tried to think as hard as I could and filled her in with as many details as I was able. She decided it was some type of “arthralgia” and took some blood work as well. She focused mainly on RA or rheumatoid arthritis and took an RA factor due to my strong family history of RA and referred me out to a rheumatologist while waiting for my lab results to return.
The results came back and I was RF (rheumatoid factor) negative (I think my level was almost negligible at 4 or 5) But my CRP or inflammation levels were very high. I was to continue with my referral.
My first rheumatologist, who sadly I found out later happened to have a malignant brain tumor, ran a very large panel of blood work. He tested everything from vitamin D levels to RF factor of his own, to CRP levels, to blood counts, to I believe an ANA (antinuclear antibodies) and whatever else you could possibly run I imagined- although he never ran his own HLA gene testing- I am guessing it just never crossed his mind. He examined me physically though didn’t seem to want to physically touch my joints much or truly examine them. Just questioned me a lot and spent quite some time on my feet and hands. This frustrated me because I had joint pain in other places, especially my initial places- my heel, ankles, elbows and spine- the spinal pain did nothing but get more and more painful over the next two years I saw him. He hands me two pamphlets, one on RA and one on PsA (psoriatic arthritis) and explains you can have PSA without psoriasis present and leans heavily on this diagnosis until I finally decide to leave his practice believing I honestly do not have PSA. I did tons of research and spent hours online speaking to other patients and researching PSA over and over and it just wasn’t the right fit I felt. I honestly felt he had made a mistake. I felt I had wasted TWO years of my time, my health and my family’s time trying to accept something that wasn’t part of me. Something that never made sense at all in my case. Sure I had x-rays done but once a year and they hadn’t shown anything according to this rheumatologist and they were only ever done on my hands and feet in his office. An MRI was never recommended, no x-rays of my ankles or knees- nothing and nowhere else when I was in agony in other joints and sometimes couldn’t walk. I was beginning to deteriorate. This doctor began to tell me to use a cane and told me how to use one before I left his practice. Gave me a word of advice about using a shopping cart in place of a cane when I was shopping- it was welcomed advice yes, but I was afraid and he was not reassuring me. The only thing I truly liked about this doctor was if I ever wanted to know something, I could ask him and he would spend the extra time with me and educate me but I didn’t feel reassured with my diagnosis. He never explained why to me that he felt I had PSA.
I should note this rheumatologist was also my allergist/immunologist and was the first doctor to ever understand the importance and DRILL it into my own head the importance of avoiding foods and foods in relation to those I had a severe allergy to. He also could not believe I had no EpiPen and quickly prescribed and showed me how to use one. I hope I never have to use it but I can be grateful he did this for me. 90% of this he did and 10% a nurse did in this. He did not make a nurse come in and explain everything and show me everything and I think that’s why I always remember now why it’s so important. I love nurses, don’t get me wrong but for some reason I just needed that particular information to be slapped in the face with and I guess I needed a doctor to do it. He also explained everything about my asthma and always provided wonderful treatment for my asthma. My asthma was never out of control when I saw him. I wonder sometimes if he should have redirected his specialties 
So on to the present….
For the last year and a half, I have been seeing a female rheumatologist. She is wonderful, and has the best beside manner but her office is run, well like s*$&. The ladies who run the front desk and the nurses are some of the nicest people you could ever come in contact with but if you need something done- forget about getting it done in a timely manner. We are talking MONTHS if not longer and then it gets done. But I digress, every three to six months that I see her she runs a full panel of labs and I mean a FULL panel. She checks my kidney and liver functions while on treatment as well as my inflammation levels. Sounds like what they are supposed to do right? Yup. In all my treatments, my old rheumy had me switching DMARDs every so many months but left me on Enbrel for the two full years with no progress. She has left me on Methotrexate because it does help slightly, and changed me from the Enbrel initially to Remicade infusions which were awesome and had me pain free for many months to now Humira which is helping but not near as well. Humira weekly works almost as well as Remicade but I am having issue after issue with my insurance company. We won’t authorize this or that or we won’t pay this until you pay $1500 up front and the companies that assist won’t pay until you order and you can’t order until you pay. It’s all a catch-22. So this doctor changes me to Cimzia, a weekly injection but I have been waiting two months now for the prior authorization from her office to be returned to my insurance company. Lucky me, I had a Humira refill so I am using that bi-weekly to get me through until they do their job. Bitter? Yes, I am.
Off on a tangent again, sorry. So this new rheumy takes x-rays when things get real bad and every year. She herself has noted damage that she has discussed with me in my wrists, esp. the right, and my ankles. We have not discussed my other joint’s x-rays. She has noted osteoarthritis in my knees as well. I have Reynaud’s, debilitating migraines, mental illness, as I mentioned before- asthma, kidney issues, and hypertension and reflux disease with Barrett’s esophagus. I am being evaluated for Narcolepsy in a week as well with catalepsy. All these affect me in its way and affect my AS in its way. I asked the rheumy for an official diagnosis as she knew my old diagnosis. She maintained the last few times that I in fact do NOT have psoriatic arthritis, there was no evidence, and that if anything she would call me an AS patient. She felt I have ankylosing spondylitis however it is HLA negative and yet my ANA has always been positive. She hesitated at first when I asked her this last time. I think she thought I was asking her a trick question lol but I don’t think she understood what I had been through and how important the diagnosis was to me. I HAD to know. You see, I AM a face of ankylosing spondylitis and the more I can admit that, the more I can accept it and move on with my life because I can’t go some places now without my wheelchair or my cane and that’s not always easy.
My condition of my spinal pain has deteriorated that much. I don’t know the actual condition of my joints personally but she wrote the prescription for my wheelchair because she understands I cannot walk long distances anymore. I can’t walk hills or run. I can’t walk more than so many feet. I have pain, fatigue, my asthma puts me out of breath and I am down for half a week after real physical activity. My cane hardly helps anymore. If I drive anywhere alone, I have to lug that wheelchair out of the back of my truck. Do I have the money for a trailer on the back of my SUV? No- because we just don’t have that money and I can live with that for now. For now I have a standard wheelchair because I have no trailer for a power chair. I qualify for a power chair but do not have the money required for the things insurance doesn’t cover to use one. I am just grateful my arms still work well. I never in my life thought I would be where I am at today at such a young age with a teenage daughter, in a fresh marriage but even though some days are hard I can honestly say I love life. I have respect for life. I AM a face of AS just like many of you reading this. You are not alone and I realize now that I am not alone and that makes me feel that much stronger in my fight.
-Written originally for The Faces of Ankylosing Spondylitis.-
No one Understands my life- IN my life.
I sacrifice and sacrifice whenever I can but I feel like no one sees. I am tired of being the middle child, even as an adult. It makes me sick. I love my mother but every time I turn around she makes decisions for my brothers and if those don’t work out she does what she does best for herself. I am never considered. I never have been by her. I remember realizing this when I was 12 and it never stopped from then on. Why I never have learned? Because she is my mother and I love her and I always have hope that one day, just one day I will be understood. It was always OK to leave me behind unless I was needed to help with something. Was I ever allowed to keep the things I wanted? No. Were my siblings? Yes. Sure this sounds like a jealousy post and you would be right in that. You yourself wouldn’t understand unless you knew the hell we went through growing up at times. I am sick of my place in this world. I have to forcefully get what I want and or need and my husband has never understood this but it goes way back to my childhood obviously. I spoil my daughter constantly and I am almost positive it’s because of the way I had been treated.
I am tired. I am tired of being ill physically, chronically and emotionally. I feel like no one in this world understands me and the people I want most to lean on do not care. No one in my life understands my emotional or physical pain. No one wakes up with me when I moan and cry from muscle or bone pain at 2 AM. My husband cannot stand to hear me speak more than 10 minutes after he gets home from work. He just wants to avoid everything. I am hurt. I feel like I have no one in this world. I wish I could make others understand, I wish others would understand but I feel so alone and lost anymore. No one understands in my life. I feel like this isn’t even coming across correctly. Feeling very misunderstood in this world.
My Self Esteem and Chronic Illnesses
I know I may not be beautiful to everyone.
I know my back may be starting to look funny.
I know my mind may go some days and make me look awkward.
I know my outfits may make me look silly.
But I am me.
I know I am not the skinniest like the models you see on tv.
I know I am not near the average looking beauty.
I know some days I cry when I look in the mirror because I see what my disease [AS] is doing to my body.
I know some days I cry because of the things I have DONE to myself because of my other disease [bipolar].
But I am learning everyday to love me.
You know how I learn to love me?
By watching others love themselves. Others who are less fortunate love their loves anyway. They love life no matter what. Sure sometimes it really makes me so angry they can still be happy, but deep down inside it’s envy. Envy that they can still love life when I can’t at that moment. I can’t right then because my self esteem is so bad right at that moment I want nothing more than to curl up, and hide in the house- even away from my family. To hide my disease ridden body- from everyone. To hide what it has done to me both inside and out.
Yes, I am learning to love me but it is hard. I try to find joy in everything in life, and I can find joy in so many things, but in myself not so much. At least not the last few weeks. Depression has taken it’s toll as my disease has worsened lately, and all because I haven’t had treatment. I have embarrassing nodules on my toes- must wear sneakers- thank goodness it just hit fall last week, though it’s still hot here.. My back is looking and feeling worse. I am swelling everywhere and look quite heavy but no medicine to help. I am living off pain medicine but only when I desperately need it, because I would never, ever, take them all the time. I refuse. So it’s hard to have good self esteem when disease is ripping apart your body and you cannot get your treatment. This makes me think of all those out there unable to receive treatment ever. It makes me want to cry for them. I am sure though, most of them, find some joy in life and move on. This is what I am learning to do. Learning to love myself and find happiness in life.
Most days I hate what I see in the mirror. I will be honest. I hate being in photographs and now I don’t even like meeting others or going in public but I am wishing and praying for a little hope to come my way. Just to be bitten with a little positiveness and find myself beautiful again. There was a time I found myself beautiful. I want that time back, but we can’t have the past back. We can only move forward.
I think my first step will be acceptance. Then I can move on to feeling beautiful. But tonight at this moment- I will accept I am beautiful. Sure, I can do that if even for a few hours alone. I think it could be a start.
Hug Me, Reassure Me…★
There are lots of things I need in this life but I try not to dwell on them. I push them further and further to the back of my mind until they are only a memory because most times, it’s almost impossible to meet my needs let alone a want. My first and most important need I have right now I could say is reassurance.
Maybe it’s reassurance the sky is still blue, Maybe it’s reassurance the grass is still green or maybe it’s just reassurance I am still breathing and the Earth is still turning. My pain reassures me most days I am here but sometimes makes me quite oblivious to time and date especially when it lasts a very long time but I need positive reassurance. I need to know it will pass. I need to know I will be OK. I need to know I will wake the next day and if not, that my family will be OK. I need to know I can beat this AS and I can beat this bipolar. I can beat the demons in my mind, reassurance, that I can beat the gremlins destroying my insides, reassurance.
God help me. I need reassurance.
