Posted 6/22/2009 3:57 PM (GMT -7)
My name is Michael, and I wanted to take a moment to introduce myself, and give just a bit of information about myself. I'm posting this in every category that I'm going to become a member of. Please moderators, if I've done something wrong, let me know. I know that not everyone will be viewing this category - and I want to introduce myself to the entire community. I have a long list of issues I've dealt with, and am currently dealing with. The opportunity to reach out to others, to be helped, and maybe to help - brings a smile to my face, of which doesn't happen often. Within this posting, I have briefly explained some of my issues. I appreciate all that read it, and get back to me. Although all these things we deal with are horrible, we've all been handed something different for a reason. I'm unaware of what that is - but as I walk down the road of life, I have every faith that one day I'll realize why I've gone through what I have.
I'm a 26 year old male, that lives in San Antonio, Texas.
I have a variety of health problems, including:
* Chronic Pain
* Nerve Damage
* GI Issues
* Migraine / Bleeding Problems
* Seizure Disorders
* Respiratory / Breathing Issues (Spontaneous Pneumothorax / COPD)
* Anxiety / Depression / Insomnia
* Heat Flashes
* Chronic Pain - The chronic pain issues that I face, tend to go hand and hand with the respiratory problems that I'm facing to this day. When I was in my very early 20's - right about 20, I began to suffer from a condition that led to Spontaneous Pneumothroax. Basically, I had small air pockets on my lungs called blebs, which made the lining of my lungs weak, and lead to them "popping" - and air escaping into my chest cavity. The one way to fix this, is to have a chest dart inserted between your breast bones, and have the air "sucked out" by a vacuum. After dealing with this over three times and not having any corrective surgery. I elected to have surgery. The first surgery, although be it painful, was quite successful - and I left the hospital. Within two weeks, the other lung then began to act up. I went through a total of two major lung surgeries, having 1/3 of each lung taken out - and the lung itself "stapled" to the inside of my rib cage. Once this happened, if the lung did pop, it wouldn't be as successful at collapsing 100% - and gave me a better chance of healing, and not having a life threatening emergency. Because so much of my lungs were taken out, I ended up developing COPD, and Asthma at my age. To help my breathing I take Asmanex 220mcg, Combivent, Proventil, and Singulair. I've been prescribed many other things for breathing, but with county insurance, I'm limited to what I can take - what's on the formulary. These breathing problems ended up developing Chronic pain. Along the ribs, where the surgery took place; but on the second surgery I suffered a bad epideral - leaving me with constant pain; that leaves me taking pills just to function. Without medication, I'm unable to move around - get out of bed - or even eat. Methadone at 10mg, three times a day - along with Baclofen, 20mg three times a day allows me to move around; but the pain is great, and ever present. I never thought life would be so hard, making you grit your teeth just to get through the day. Tears come to my eyes, and self pity rises, but one must rise above all that...be it difficult...and some days impossible. The medicaiton deadens the pain to a certain extent, some days making it tolerable, and other days not feeling like it's doing much good. I feel old beyond my years, 26 and trapped in a failing body; but I have life - unlike some. I try to see to the other side of the rainbow - but sometimes that rainbow seems so far in the distance, rain clouds and lightening blocking it from view. I have faith that one day we'll find a proper combination, or some massive medical breakthrough; when that day comes, maybe they'll make me good enough to dance in the street, instead of walk slowly while stumbling. My back seems to be my major problem. Although my neck does bother me, my back seems to take the cake - and outweigh everything else. Hurting to the touch - and constantly locked up. At times I feel like I have a metal bar, running the length of my back - the muscles so tight you could lay me down and use me as a bridge over a puddle.
* Nerve Damage - The nerve damage has not fully been diagnosed as to what has caused it, and what will cure it. I find a lot of doctors simply shrugging their shoulders at me. We've tried every medication in the book! It seems to be limited to my left side, leaving my leg crawling, burning, itching - and sensation not near what it should be. It seems to be the worst at night. At times, it will feel like there is a colony of fire ants crawling on my leg, and arm. Biting and stinging, like they're trying to take a piece of me away, eating me alive. The spasms, which I feel is related to the damage, can become ruthless. Twitching, my leg seems to have a mind of its own! I awake in the middle of the night, to what feels like a full blown "shock and awe" on my leg. Burning, itching, throbbing, twitching, and spasming; I'm forced to try to get up and walk around - work out the problem, all in vain. It stops, when it wants to stop - it starts, when it wants to start - never consulting me first. What is also odd, are the spots on my leg / arm that seem to bother the most, don't actually get "goose bumps" when the rest of my body does. I'll look down - and boom, the parts that bother me are smooth, while the rest of the leg / arm has goose bumps all over it. The spot where the bad epideral took place, is also so very sensitive to the touch - even my shirt rubbing upon my back at times will feel like someone sticking me with a poker, straight out of the flames of hell! Currently, I am awaiting a MAP of Lyrica to see if this will help. Gabapentin and Amitriptyline have not been effective in management.
( How this epideral became bad - During my second lung surgery, I elected to have an epideral because I was told it would deaden all pain, and I would be much more comfortable. I was informed - it would be a "fusion" epideral. Well, once I woke up back in my room after the surgery, I felt something wet all over my back. The epideral had come out of my spine, and was leaking the medication all over my back. The charge nurse assigned to me, but the epideral back in my back several times - a total of 5. Each time this took place the pain, stabbing, burning - became worse until I was screaming for my life. I couldn't stand the pain any longer, and the doctor was called. They were furious, took me off the epideral - and assigned a demerol PCA pump for 96 hours)
* GI Issues - Since I've been a child, I was always known as "the puker". I would vomit when the wind changed direction. Hospitalized quite a bit for vomitting for days, no one has been able to find the true cause for this problem. I've spent so much time in the hospital due to being dyhydrated to vomitting days on end. Some may say it's a nervous stomach, I know that the constant, and horrid pain has something that impacts this. I had an indiception (sp) not to long ago, a total of 2 times. I've heard some doctors tell me that this is odd for someone that has become an adult. This happens when your intestines telescope upon one another, and knot up...not comfortable. I had been to the emergency room for 3 months in a row, every 2 weeks - so one (of the many) hospitals in town - did another (one of hundreds) of scans - and decided to take out my gallbladder. Well, this was in vain! Not only did I get a bit of an infection, I stayed in the hospital for two weeks over such a minor surgery - more battle scars! Now, I live on Protonix 80mg, and Phenergan 25mg 4 times daily - to control the nausea so that I can hopefully stay home. It's amazing how so much can bottle up and cause GI problems. Pain, stress, anxiety - they all contribute to a vicious cycle that seems to never end. A nightmare that I've not been able to wake from; one day I'll find my beauty rest, and be well.
* Migraine / Bleeding problems - Now, I know this is an odd one to go in for a mix. I began to develop these horrible headaches, about two years ago. One day, I realized my vision was getting blurry, and I tasted a very strong "iron" taste in my mouth. I couldn't hear very well, and I felt - "loopy" - my room mate then informed me that I was bleeding. My eyes, my nose, and my ears - had blood slowly dripping out of them. I couldn't see, because my eyes actually had blood in them. It looked like something from the exorcist - yeah, call me the next Emily Rose. Doctors have run CT, MRI, and ENT has looked and probed all those parts...Imitrex 25mg, 1 tablet, followed by 1 tablet every 8 hours not to exceed 8 tablets in 24 hours; seems to help. It keeps the headaches at bay, and once these are at bay - the bleeding seems to not sneak up upon me as quickly, if at all. I suppose, other than totally freaking myself, and others out - it's not been a real big issue. The headaches, which I call migraines can snap me to the floor. Vomitting, every noise sounds like it's popping your ear drums, and of course light - all impact them, and make you want to rip your head off. The only good thing? ENT cleaned out my ears...buh bye waxy buildup! Propanolol 40mg twice daily is supposed to help with the headaches, as well as lower my blood pressure.
* Seizure Disorder - Now, this one is ever present, yet tends to hide. Years ago, I began to have, very odd feelings, loose track of time, and wake up hurting - feeling very odd. Long story short, I would go into a seizure - my body afterward feeling like it had been run over by a fleet of city buses! Due to these being uncontrolled by many medications - I was forced to wear a bicycle helmet, and sell my car for about two years. They come, and they go - at times I have a warning feeling - may it be bright light, however more than not - a very strange smell, and just a weird feeling. When these first began, I had so much going on - that I declined going into the Neurodiagnostic center at the hospital. So much had gone wrong, and continued to go wrong - I was scared, I didn't want to face another demon. Now, they're called psuedoseizures. In my head? I've read that's what it means...but I believe it also means, not diagnosed. A figment of my imagination, my nervous and emotional centers breaking down; needless to say - it doesn't matter. They're real...I spasm, I choke...I've hurt myself. Dilantin didn't help, Gabapentin didn't help - Depakote didn't help...so now, we just hope they don't happen. I average, maybe one a month now. Although not as severe as in the past, certainly not requiring a helmet - it's still a curse...and one I wish I could do without.
* Respiratory / Breathing - I went into this topic up on my chronic pain, as they seem to be going hand in hand - the breathing issues are what developed the chronic pain, or I should say - the bad epideral. The inhaled steroid, Asmanex, I haven't seen much of a difference with - and I still find myself reaching for my inhaler. The blebs were a congenital defect - bad genes, something my father passed down to me I've been told. The COPD and Ashtma are a direct result of the lung disease, and mainly the surgery. A huge intolerance to the cold - and very high humidity makes this unbearable at times. I'm unable to exercise, not only due to the pain, but due to not being able to get much air in! Although my breathing tests have come out well, when you're missing parts of your lung, it's very clear how your breathing would be impaired. The odd thing, is although my lungs have collapsed - up to 80% at times, my O2 Satruation never went below 95% - going to the ER with chest pain can be such a pain; not only am in the ER - but my O2 will be just fine. Many times, I'll feel unable to breathe, and request oxygen because it helps with the pain - but be denied such a thing b/c of the O2 readings. I explain what has happened, and my personal experience with my body - yet it makes no difference. Some doctors have the "GOD" syndrome, I suppose that's what happens to some when you feel like you can perform miracles. The Proventil seems to be ineffective for helping my breathing anymore, the Asmanex, I've only been on for one month, so I don't feel much of a difference on it. Combivent has always helped, and is my personal inhaler of choice - yet it's not covered by my insurance, and unubtainable at the current price. There are other medications that have been prescribed, but if it's not on the formulary - I simply can't come close to affording such a thing. Singulair has been started with me again, so we'll see how it helps breathing, and allergies.
* Anxiety / Depression / Insomnia / ADHD - Well, in a way I feel like these all go hand in hand. Anxiety is a horrible thing, but then again, so is anything that you are forced to deal with when your body doesn't seem to work quite right. I can be in a crowd, and get so anxious I want to bury my head in the sand. My chest gets tight, my pain gets worse, and its hard to breathe. What do I find myself doing during anxiety? A stupid thing considering my problems, I smoke - and I smoke to much. Smoking helps with the anxiety, but also the pain. I know I should learn some coping techniques, and hopefully soon I will. My stomach will knot up - and I will get sit to my stomach. I'll stutter when I try to speak - unable to find the words to come out of my mouth. Depression has set in since my lungs first began to go out. Being my age, and unable to do what my piers can do - is very disheartening to say the least. I feel like a failure, I feel like - I can't love anyone, the way they need to be loved, because I don't really seem to love myself any longer. I have an angel in my life, and I know this - but sometimes, I push them away. Not wanting to leave the house much anymore, and not wanting to talk to anyone; I know the depression is worsening, and I have to do something about it. I don't remember what true happiness feels like any longer. The depression impacts the anxiety - and also makes the pain worse. It can kill my appetite to where I will no longer eat much, or it can make me ravenous; like a monster wanting to eat everything in sight - sometimes I feel like a bear about to squat for the winter, need to build up that belly...after all this, I look in the mirror and I'm unhappy because I'm to fat, or to skinny. I don't remember the last time I had an inbetween. Anxiety / Depression, well they also lead to insomnia. I can go for weeks without getting a proper nights sleep, this impacts the anxiety, depression, and pain. The cycle never ends. When I can get sleep - I seem to dream, and the dreams I've been having aren't pleasant. My mind wonders, and never stays. I've been diagnosed with Ruminition of thought - whatever this may mean. When I was younger, I was told I had ADHD - it's impossible for me to concentrate on anything. I can sit down, and within 2 minutes of watching TV, I'm going to my PC, or messing with my smart phone. Always having to fiddle, be busy, do something. Finishing a task is nearly impossible, I don't remember the last time I finished something I started. I always remember growing up, being told to finish what I started; didn't happen then, hasn't happened now. Concentration doesn't exist with me - and I always thought it was something I would outgrow...maybe not.
* Heat Flashes / Sweating - Now, these are horrible. It can be 70, and due to the pain, nausea, and other problems, I feel like I'm about to burst into flames. Sweat pours from every pore of my body, and I can be soaked like I just walked out of the shower. We've looked at so many different causes, and everything has checked out fine. I suppose I'm a 26 year old male that's experiencing mentapause (grins) - I find myself changing shirts, a couple times a day - and constantly wiping off my forehead. Taking a shower, getting ready, and then feeling dirty because I've been sweating is awful! It also doesn't help that here in the south we have heat like it's coming out of a furnace! Although, when I've been up north in the Winter, the same thing happens - what's worse, being hot and wet, or cold and wet? They seem to be the same to me. Talk about an electric bill at that - when you have to have your house constantly cool to be comfortable, it's rough on the pocket book.
I've been able to work for quite sometime, about five years now; and finally I've hired a lawyer in town to fight for my social security. I never wanted to get on the program before, because - it felt like it hurt my pride. I always said, I'll get better, but this has been 5 / 6 years, and I'm not getting better. One thing leaves, another comes - and then what left, returns. I feel like a revolving door in a business building, in and out, in and out.
I had filed for social security on many occassions, however - was always denied. At my age, it's not an easy task.
Luckily, my best friend's uncle has let me live where I am now, and I have a place to stay. I'm one of the lucky few. I've been blessed to have at least one person that's cared for me, and I know that's a blessing - many have no one, at least I have one, and I couldn't ask for anything more.
It's been a pleasure meeting you all, and I look forward to speaking, and getting to know more of you very well.
I do have more issues, and I'm sorry this has been like a book. I've been told, I need to let go, I need to get things out. I'm trying, and I hope my first attempt hasn't failed, or upset anyone.