My Fibro story actually isn't a story,

it has been a very long hard journey that has taken over and ruled my life piece by piece, one day and one year at a time. Sometimes so slow I didn't even know it was taking over.  Other times so fast I thought I was on a jet and it would never land again.  A disease when put with one like Hidradenitis Suppurativa devastates the whole body, and at no time does the body have a chance to regenerate and heal.  It is always in a flare of one or the other and most of the time with both.

     My fibro I am not for sure exactly when it started, but could have even been around puberty, but somewhere between there and age 24 I knew that something really had a hold on me, and I didn't know what. Since no one knew what the HS was and what kind of symptoms you had with it, I just always thought I felt bad, wanted to sleep, hurt all over like I had the flu, one side of my body hurting one day and then the next day something else, or sometimes I could go for weeks and months at a time without anything was just part of whatever was playing havoc on my body with the knots and lumps I had.

     But sometimes my flu felt different, I knew it was different than the feeling I had when my knots were really savage, this flu was 10x worse.  With the knots I would have temperatures, but sometimes I would freeze to death, literally.  I would be sitting watching TV and then I would start shaking and freezing to death to the point of turning blue, my husband would pile blanket, quilt, one on top of the other over me, these freezing spells would last up to three hours at a time, I couldn't move, I couldn't get warm, I couldn't function. Then just as quick as they would come on they were gone.  I started itching, all over, not much at first, but as the years have progressed it is a wonder I have any skin left between both the HS and the Fibro.  Doctors said I had allergies which I did, so ok medicine for that.  Everything I told the doctors that was happening was either allergies, or there was never an answer.  Looking back I guess they thought I was crazy, a hypochondriac, but I knew I wasn't.  Something was going on but what?

     Thank goodness I met and married a wonderful man my husband Frankie, he has been my rock for almost 22 years now, and all I can say is the Lord put him in my life, because he knew I needed him. He stood by me and I don't know how with both of these diseases and one didn't even show.  Fibro leaves no marks on the outside of the body like HS.  It leaves its marks on the inside in more ways than one. We have two children a girl and a boy and there have been so many times that I wanted to do things with them that I couldn't.  Play with them, take them places, but I couldn't.  Fatigue would get in my way, or pain.  Try lifting your child with 4 or 5 HS lumps under each arm and fibro tearing at your arms at the same time, not an easy accomplishment to do.  Sometimes a hug was more than I could bear.  And for them to pat and love on me?  Torture, and they didn't understand why Mommy didn't want them to, and I couldn't break their hearts and tell them no, so pain was there to, even from the hug of my own child, or husband.

     I contemplated suicide many times, almost daily in fact, no one could see how bad I hurt, how tired I was, how alone I was, and no one knew how depressed I was.  The older I got the worse it was getting, but the doctors still said allergies, and one doctor said it was the lumps that I had.

     I work retail which means you don't get to sit down, and you walk all day, and you put up shipments, etc. etc. for those thinking it is easy, they should try it sometime. It's not.  It is however a job that I thoroughly enjoy, and I had been there about three years and the pain was getting worse, so much so that I was taking BC powders like candy and washing them down with tylenol.  I would get in the car to come home and cry all the way because I hurt so bad.  Getting out of the car when I got home was worse than working all day, and making it into the house was all I could and still can do.  One morning I got up and went to work we had important things that needed to be done that day I saw that I wasn't going to be able to do them.  I told my Manager your going to have to get someone in here because I can't do this, I'm sick and I have to go home.

     I went to a new Nurse Practitioner that I had taken my son to, told her what was going on, crying from hurting so bad, and after many many tests, blood tests, etc. the only thing left was fibro.  Then she did the tender point test, and I tell you what those points are not tender, they hurt like you know what.

     I have been on many types of medicines, painkillers, etc.  and I still am.  I know when I first started going to her she said this was not a progressive disease.  I beg to differ with her or anyone that says it is not.  I believe for some it may not be I do not know.  I can only speak for myself.  Mine has progressed over a long period of time and for the last three years there has been no let up, no remission, and only one, sometimes if I am lucky two good days a week.  A lot of weeks I don't get a good day. My sleep is nearly non-existant and I am afraid so will my job be.  Fibromyalgia has taken a lot and the sad part of it is, it still continues to do so.