I am a 38 year old woman, I have 3 children of my own, 4 Step Children, and 4 gradchildren. I am happily married to my husband David for 14 years.  We are both on our 3rd marriage, and I have to say that their right, 3rd time is a charm.  I could not ask for a better partner.  He is supportive, loving and he has not turned his back on my illness yet....

My children are with my first husband, Davids children are with his first wife and another woman he met after his first divorce.  Most of them live on their own now except his 16  and  22 year old daughters our 3 year old granddaughter.  My son is 21 just moved out  with his fiance and thier 3 month old daughter.  My 19 year old daughter lives with her fiance and their 2 month old daughter.  My husbands other daughter, 23 lives in PA with her husband and 2 year old son. I also have an 18 year old daughter that lives with her friends and my husbands 24 year old son lives on his own.

My husband and I spent our first 14 years working together in the Telecomunications industry as contractors, we also had our own automotive shop for a few years.  We traveled, had a home, lived the great life.  I was always on the go, drive to DC one week then PA the next, while he was flying to CA or out of the country.  Work was great and we made awesome money. We would go out in our boat all summer long tubing, skiing, going to Block Island for lunch.  We did gardened, planting flowers and fruits, and vegtables, I loved cooking, home improvemets, working on cars, shopping was my passio.  Our average hours of sleep per night were anywhere from 4 to 7.  But we were so  happy, healthy, and loved the life we were had, and we love our family.  It just seemed like nothing could go wrong, and this is how it would be till the day we died.  I was going to modeling shcool for fun with a friend, I was working out at the gym everyday.  I graduated college as an Executive Medical Assistant.  It was just non-stop, go, go, go.

We had friends, we went dancing every weekend.  I loved the outdoors, laying in the sun, walking on the beach. I loved taking long drives, listening to all types of music.  Really, it just seemed liked the perfect american dream, nice home, great kids, and tons of love. We don't have a lot of family, most of them have passed on.  Neither of us have living parents, so we stay close with our kids as much as we can.  They are all grown now but one, she just turned 16.  There is so much to say about what I was like before I became ill  9 years ago, but it makes me to depressed to talk about it cause I'll never have that part of me back.  I do love life, but it's hard to love life as much as I used to because my quality of life has diminished so much that it makes it hard for me to enjoy anything. 

I loved to dress up and always looked good, i never left the house without having my hair done, makeup on and my clothes were always dressy.  I almost never wore seakers, I loved my heals...

Sometime around the year 2000 things started to change, I started having little issues that at first would seem like I was just tired and worn out.  I could no longer wake up in the morning.  I went from jumping out of bed at the first sound of the alarm, to my husband having to shake me drastically to wake me.  I would drink my coffee while falling back to sleep uncontrollably, it was a feeling like being drugged and it would take about and hour or two to wake up enough to shower.  A short time later I started waking up wet, at first I thought I was peeing myself in my sleep, cause the wetness was only around the  areas of my buttocks and "front area", after about a week, I brought it to my husbands attention, I was scarred and embarressed but knew I needed to tell him, well, we investigated it and found that is was not pee "whew" but then what was it.  Over that year, it started to get worse,  now it was spreading, down my legs, up my chest, to my arms and head.  I was soaking though my pj's, the blankets and even my husbands clothes. It was getting crazy.  I started sleeping with a towel to wipe down, cause at that time I also started waking in the night, but not completely, again, it was like a drugged feeling, I couldn't control anything, but I could feel the wettness, so I would wipe with the towel and fall right back to sleep.  My husband started keeping an eye on my at night and he said that my body was getting so hot you could cook a meal on me.  We started taking my temperature, only if I woke up, but my temperature would be low, which is my normal, somewhere around 5-8 degrees below normal.

As time went on more things were happening, my eyes started buring due to light sensativity.  I would be driving and have to pull over cause I couldn't see, water would stream down and I would hold my hands on my eyes to block the light, sun glasses just did not help. I stopped driving so much, had shut lights off in the house, it was to much. Then  my whole body started to hurt all the time, but my back felt like someone was just beating on it non-stop. I was diagnosed with Fibromyalgia in 2000 and again in 2004 I went to doctors, who put me in land and aqua therapy, massage therpay,nothing was working, I was on pain meds, anti inflammatories, patches, tens machines, I had a rumotologiest, a primary care. A specialist in Fibromyalgia, a nutritionist, a pain clinic doctor, a phycologist, orthapedic surgeon, you name it.  Well, things kept getting worse, I could no longer work, I could barely walk and giving up seemed my only "hope" I applied to disability, but i knew there was something else wrong.  I did research, I spoke with doctors, and I came to the conclusion that I either did not have fibromyalgia, I had something else or I had firbromyalgia with something else.  I knew my body and mind, and based on what I was reading on fibromyalgia, there is no way that could take me down.  In 2005 I had surgery on my left shoulder and right knee, that helped me with my walking and stopped my shoulder from pulling out of its socket. (painful) But all the other problems still continued. I also stopped working and applied for disability under firbromyalgia.  In 2007, while at my disability hearing I learned what I had.  It was a few things.  The doctor of course mentioned the firbomyalgia, but then he informed that the 3 mri’s I had showed something.  Now keep in mind, I had 3 mri’s and was told they were all normal. I was loosing my life, my mind,everything I knew and then here it came.  The states doctor said, “your mri’s were not normal.  He threw out this huge word, I had no idea what he was talking about, but it took the judge 5 minutes to determine that I was disabled and needed to be on disability.  Of course, had I known what the real issues were, there would not have been a hearing, I would have been approved probably the first time around had I and my primary care known what was wrong.  I had a deformity in my spine a patrusion they called it.  I also had degenerative disc disease but those where nothing compare to what came out next. ARACHNOIDITIS. Of course, I had no idea what that meant or what it was.  I went home, I looked it up and I cried.  Now it is 2009 and I feel wrose than ever. 

Everyday, every minute is different.  I can’t live life, I sleep all the time.  I am currently on Fentanyl 50 mcg patch, along with medical marajuana. I have stopped seeing all doctors, and stopped all meds, other than the two listed and my primary care.  I am so unhappy, lost and confused.  I don’t know what to do.  I vomit every two days for the last year on the Fentanyl, I am in pain constatly, although not as bad now that I have the patch but still very painful.  I can’t walk through the store to shop, by the time I’m in agony.  It is just non stop pain, one problem aftere another.  What do I do, I can’t stay dopped up on meds for the next 20 years of my life.  I have grandchildren that I can’t play with or pick up.  I can’t take walks with my husband.  I sleep for hours and hours thoughout the day.  I hardly eat, and that’s because I will lose weight if I do and because I just don’t want to eat. I have no appetite..  Sound impossible, well it’s true.  I have always been very tiny, I eat anything and everything I want, but my weight keeps fluctuating between 85 and 95.  I was put on a 3000 calorie a day “diet” but lost weight.  I spend a ton of money on nutrional drinks, to take the place of food cause I just can’t eat sometimes. I have had bleeding problems that have no explanation.  I need help, I just can’t take it any more.  I need and want my life back, I’m only 38 and have been going through this for 9 years now.  I went to a nurologist but got no help.  She tried to say that I got the Arachnoiditis from the spinal shots, but the first MRI showed the arachnoiditis and I didn’t get my first spinal shot till after that. 

I need answers, I need help.  I don’t know where to turn, but there has got to be something or someone out there.  I’ve done research on line but it’s not helpful, it’s like slamming your head against a brick wall.  I read that there is a surgery but it only releaves the pain a little and only temporarily.  I was thinking that maybe if we fixed the deformity and the degenerative disc that it would help relieve some of the pain and I would not need to do the risky surgery for the Arachnoidits.  I don’t even know how bad it is, where it is, if it has spread, or what I have to look forward to.  I don’t know where to turn now, but I know I can’t spend 24 hours a day, 7 days a week, 365 days a year, in bed, in pain, for the rest of my life.