Where do I begin ? That has been my big question! Well, let me see -- I am going into my third year with Lyme now, or shall I say, third year of treatment. I had been suffering from all different kinds of Lyme things, but who knew? I probably have been walking around with Lyme disease for over 30 years now. It sort of explains so much in my life.
I had mono in 6th grade. I was sick all the time. I was also told I was allergic to antibiotics, but in fact, every time I took them I herxed! Again, who knew? First, about 18 years ago I lost my hearing in my right ear.They called it "Sudden Loss Of Hearing" back then, at UCLA, Stanford, and then UCONN. Well, now I know it was due to Lyme.
Over the last ten years my hip went out, then my knee, and then my wrists. I thought I was passing kidney stones and I also had ice pick pains in my breast. The last thing was elbow. I was bartending so I thought it was tennis elbow from bending and holding heavy things, but I braced it and worked on for months until it was so unbearable, that I finally went to a doctor.
Now people were saying that maybe it was Lyme because my knees always hurt after a long night standing! So I looked up a so called Lyme literate doctor. He tested me and treated me. My test had come back equivocal. After a week on doxy I came crawling back in the office and he said "yeah you definitely have Lyme and you are herxing!" Little did I know at the time that all my past symptoms were Lyme related! Everything!
You see, no doctor could ever tell me why my knee went into so much pain and then got better after 3 months. It felt like I was passing kidney stones but yet I never saw a stone! Now that I knew Lyme pain, it all came together -- such very familiar pain! Sharp ice pick pains. Now I know them ever so well.
Well, that's when I turned to my computer and found all my Lymie friends. Someone had told me that they'd heard Dr. Phillips speak and that he was great; so I was off to see him, and there I stayed! Thank God for the support groups too!. I really don't think I would be as sane as I am right now if it weren't for all my friends online to share a story or compare pains with. Just to know that you are not alone makes a huge difference in dealing with it all.
Because let me tell you ... no one believed me! I have 4 sisters that thought I should be working ... they still don't understand why I am not! They work with pain......but they still have no clue how bad I can get. I had a couple of life long girl friends that thought I was looking for attention ...by being sick (my comment to them was I get more attention when I go OUT!). I got no cards or flowers or even phone calls ... people just didn't want to hear about it! They didn't understand therefore they could not relate in anyway whatsoever.
That's when I was determined to get the word out. I wore lime green nail polish for two years.....I will, and have talked to anyone who will listen to me....I mean telephone operaters, catalogue people --anyone at all. I get on the phone woth them and you know what, they listen. I just want to them to watch their children and themselves, of course. I even go into "Over Forty" chat rooms, and when someone asks me about Lyme disease I sure let them know about it. I think it is our duty to educate others .....since our government is doing such a poor job at it!
I did orals and IV for 4 months! I'd have to say that those were the days of my worst herxing ever! I had 4 day cases of paralysis and my hands curled up for days on end and I couldn't pull myself out of bed; I literally had to throw myself on the floor and crawl. At one time I couldn't bend my knees to sit on the toilet; I finally realized why they made those high toilet seats for the handicapped. I needed help to do everything, and I wasn't ever like that at all, before Lyme.
But after the third month things turned around for me and I didn't want to go off the IV. Then I relapsed after my dad had a stroke. Then more orals, then bicillin shots, then double shots. I have to say that has worked the best for me! I spent over a year on the couch not being able to move for days on end, or lift my head from the pillow because of such neuro herxing.
There were months where I had all the shades in my house drawn. I had to wear my sunglasses in the house and on the 'puter. I have to say now that I feel so much better. But I still can not work. I never know what each day will bring -- will I have another headache today? Will my knee give me problems or my ankle or wrist? what will it be now? I also haven't driven in almost two years -- I got lost a couple times in my own home town. That was very scary when I'd get very disorientated. I also drove off the road twice so that was enough for me.
My eyes are still very light sensitive, so I won't be able to drive at night, but I do feel a lot better. I think I can drive short distances on a clear day now, so I am going to get my license back real soon. I just thank God that I have all my limbs, even though they are riddled with pain most of the time! I think you all can hear me loud and clear. I know how we all can relate so well. It is like we share eachother's lives in a way; a very sad way. Here's to better days ahead!
As far as people not believing me anymore, I just give them a LQQK and say I am faking! I like being stuck in a house ...GRRrrrrrrrrrr! I offer them my shoes for a week or so; please take a walk in my shoes before you judge me! Here is hoping there is a cure in the near future -- for us all! And a vaccine that works!!
One more thing I am thankful for -- that my husband and son have always stood by me. They both have seen me through the worst of times. My husband never doubted that I was sick -- never thought I just didn't want to work. He knew I enjoyed working. One day I practically crawled into my sons room asking him to lead me to the lazy boy chair; I was in such despair and so full of pain that he said, "Mom, if I could carry you I would."
He remembered when he broke his arm and I gave him a bell to ring when he needed me. So, he rigged up this bell with fishing line from the attic drop door over my door, to a plant hook over my bed, and hung this heart frame with a tassle for me to pull to ring the bell when I needed help. Both my husband and son have felt the burden of this disease -- I am sorry for that! I know that it is not easy to be a constant caregiver, so I don't plan on being this way forever........
Oh please let there be a CURE in the new millenium. My quote to all " I am not Lazy, I am not Crazy - I have Lyme disease!" Sincerely, with much love and peace in my heart.