Welcome to My Thoughts

Welcome to my thoughts, my dreams, my hopes for my future and the future of mankind. I find myself in a position of having my world turned upside down and have found a safe place for me to go and say what's on my mind & in my heart and I want to share that with all those I care about. So •*¨*•.¸¸ღ Ƹ̵̡Ӝ̵̨̄Ʒ Welcome Ƹ̵̡Ӝ̵̨̄Ʒ¸¸.•*¨*•., and I hope you find some answers and some enjoyment while you explore my blog and get to know me on a deeper & more personal manner.

Thursday, September 30, 2010

Living With an 'Invisible' Illness...

     I'm tired! 
     I'm sure many of you are saying "So what...everyone gets tired!" But what I'm tired of is having an illness that no one seems to really understand. Many people say it's all in my head or it's just an excuse to be lazy and not find a job after being laid off when the economy got so bad. Well let me enlighten you...there are to many of us with the same illness, or similar ones, many of whom have been diagnosed and many who just think they are tired. getting older, or really start to believe what people tell them about being crazy or lazy. That breaks my heart, but it really destroys my sense of self worth when it's someone who knows me, loves me, is related to me, or is a dear friend, and can't see past the obvious or has never cared enough to really know me. No I'm not pointing fingers at anyone because I figure if you are thinking this is about you then maybe you need to re-think where your heart and mind is at. 

    You see...this is actually about me and will hopefully help educate people who know someone or think they may be suffering from something they don't understand because for someone like me, who is older and overweight, with health issues to begin with, it's easy to doubt your own mind when it tells you something is not as it should be. Your so busy taking care of everyone and everything else in your life that it's easy to attribute things to the aging process and let it go on for years until the suffering and pain get so bad you start grasping at straws to find out what's really wrong. 

     In my case it started out as multiple headaches, practically every day,  that sometimes presented symptoms of migraines. Then came pain in my shoulders that grew increasing worse. Of course I thought the headaches were primarily tension from my shoulders and upper back pain. I started out with a PCP and she had x-rays done and didn't find anything. Progressively over time the pain got so bad I went to a pain management doctor....he was a winner! He barely touched me or had me do anything, just asked me a few questions and gave me a scrip for Percocet. A lot of help he was! I went to another doctor's office and was seen by the docotr's PA's and after several visits, questions, tests, etc, I was sent to a Rheumatologist. He did more tests and diagnosed osteoarthritis (that was an age thing. LOL) and Psoriatic Arthritis. I have had Psoriasis since I was a young girl and my parents had been told I might possibly suffer with Psoriatic Arthritis as I got older. This form of arthritis can be very crippling but at this time I have very minimal dis-figuration in my joints from it. I have Diabetic Neuropathy, which is what I blamed my lack of balance and coordination on. I had just about decided I was simply getting old and falling apart but then I started suffering bouts of nausea off and on. I would have to pull off the road sometimes on my way to work or sometimes when I was coming home in the evening. It would even happen while I was at home. Since I am post menopausal it sure wasn't morning sickness. LOL Then I started falling asleep while I was driving to or from work, started nodding off in the middle of something I was working on at work (good thing I had a desk job), fell asleep while I was on hold on the phone. It was crazy! I was already using a c-pap to help me breathe while sleeping because I have sleep apnea and it keeps air moving into my lungs so I don't wake up during the night gasping for air. Okay, so here I was being treated in some way for many things but the pain got so bad that even a touch on my arm could cause me to cringe away in pain. I'm not talking about a poke or a pinch but just a light touch. Now that was really to weird for someone who has always been told that she has a high pain tolerance level. I gave birth to both my children totally natural and have passed kidney stones as big as a pencil erasers and toughed it out. C'mon...something is really wrong here when I start whining about the smallest touch or pressure on my body. I was sent to a neurologist who did a nerve conduction test and even he told me most people find it painful but I hardly felt what I would think of as "pain", partially due to the neuropathy in my feet and Carpal Tunnel Syndrome in my wrists, but he even commented on my pain tolerance level being quite high. I was finally diagnosed with FMS last November and though I haven't received a diagnosis of CFS I am being treated with a sleep aid/pain/anti depressant medication to help me get more restful sleep. I don't just drop off any more but I do find I am extremely tired when I have been going through flare. The pain is just not conducive to restful sleep because nothing makes the pain go away. I take naps off and on daily to maintain some kind of energy level. It has taken many years to get this far and yes, it's gradually gotten more severe. I have tried all three medications that are currently being used to help reduce the pain & other symptoms associated with this illness and had bad reactions to Lyrica & Savella and the Cymbalta did nothing at all. 

     I thought I would try to keep a daily record of what is going on, the weather, what I eat, and anything I do each day to see if I can determine exactly what causes me to have worse days than others. Then I would know what to watch for to prevent flares. I thought if I could keep an exact record I might be able to help other sufferers prevent their own flares. I know that is probably just a dream on my part to allow people to live a more complete life because I somehow doubt my triggers are going to be exactly the same as someone else. Besides, sometimes my brain is so inefficient I wouldn't be able to stay focused on all the information I would need to jot down for it to make much difference. I thought about buying a small recorder and talking into it throughout my day but I figured people would think I was someone important or I was bonkers.

      I pray for good days! I pray for understanding and compassion from others! I pray for others who suffer along with me to have more good days than bad! I pray that mankind will learn to care for one another and not be so quick to make hateful assumptions.

     I thank God for the fellow sufferers of chronic illnesses I have become friends with so we can form a support system! I thank God it's me that has this and not someone who can't bear the pain! I thank God He has given me the strength to struggle through even though there are days when I fail miserably to accomplish much at all...except pray! 

     I apologize to everyone I care about for any inconvenience I might be because of this illness.  It's only those closest to me that suffer the most on my bad days with my inability to do all the things I used to do, my sometimes negative and angry attitude. I know it seems like I am mad at you but in reality I am mad at myself for my inability to do everything I want to do on any given day and pain just makes me growl and whine even more. Please forgive me! Please bear with me! 

♥Ƹ̵̡Ӝ̵̨̄Ʒ♥Ƹ̵̡Ӝ̵̨̄Ʒ♥Ƹ̵̡Ӝ̵̨̄Ʒ♥*´¨`*♥ ღ Love & Hugs & Prayers ღ ♥*´¨`*♥Ƹ̵̡Ӝ̵̨̄Ʒ♥Ƹ̵̡Ӝ̵̨̄Ʒ♥Ƹ̵̡Ӝ̵̨̄Ʒ♥