Wednesday, August 18, 2010

One year anniversary of being sick.

August 14th marked the day my life was turned upside down by Lyme disease.  Little did I know that those strange symptoms would last this long.  Every day that I went to sleep at night I figured I would wake up feeling much better & whatever was ailing me would go away.  But it never did.  Lyme disease is a disease I don't wish on anyone.  People don't understand it, so they treat you like a hypochondriac.  I had to learn not to talk about it.  Because it was obvious that they didn't want to hear it.  This last year has been the worst year of my life.  My friends & family have never been able to understand what this is like for me.  And I know they have often thought all of this was in my head & probably still do.  Or I could just make it go away if I just thought positively.  If I didn't focus on the disease.  TRUST ME, all I would do is tell myself I was getting better, & I would thank God & the Universe for my healing.  Every day. I repeated it over & over.  Whenever I would see a sign of healing, I would take it & run with it. 

Lyme disease is a very lonely disease.  It's different than having cancer. Cancer has a proven treatment, thousands of doctors & a government that acknowledges it & treats it. So when you have cancer, it's OK to feel sick.  But not with lyme disease.  With lyme disease, you are just lazy & bringing all of this upon yourself.

 Please make sure everyone in your life wears their bug spray when they go to a park, playing on their front lawn, going camping, hanging by the lake or the river, hiking, gardening, etc.  I don't want this to ever happen to anyone else.  It's not just a physical illness, your family & friends will bail on you.  Plain & simple.  I don't know a single person with lyme that this hasn't happened to.  As you get better though, they will slowly come back around.  But you don't ever forget how they treated you when you needed them most.  Sorry, I'm still a little bent out of shape about this.  Not having anyone to talk to about what I was going through has been the hardest part.  Being locked up in your house every day, 24 hours a day for days, weeks, months at a time with the rarest of visitors or phone calls.  I am lucky to have my husband & the support of the people that I have met online.  Without my "virtual friends" this journey would have been a lot darker & who knows where I would be right now, if here at all.  (I love my dogs.  Two of them just came up to me & gave me a kiss).  They know I am hurting.

Friday will be 6 weeks that I started 2 grams of IV rocephin once per day. First few days I was sleepy, then I felt pretty darn good. Felt like exercising! Then I was fatigued for 9 days. Then I as fine, but then my lyme cycle hit. I think I am now on 6 weeks cycles. WAY more good days than bad now. Since I started Bicillin injections in November, it has been a slow but steady incline in my health. I am very lucky. Any herxing I had was at the very beginning of treatment and was very minimal.  It usually included extreme nausea & feeling like I had food poisoning.  My body & head hurt & it was pretty much agony.  1st herx lasted 5 miserable hours.  2nd time that happened it lasted for 2 hours.  And then my herxing was diminished to just mild nausea off & on.  It usually occurred the day after an injection of Bicillin, so I know that's what it was.

I went to the great doc (I love my doc) in Malibu last week & he said we'd be doing at least another 4 weeks of the Rocephin. He said that all my blood work is fine, so we will continue. I am happy because I know of people that have come a long way with Rocephin. I am especially looking forward to the brain fog lifting. I hope it goes away, or lessens soon. I have barely a short term memory & word recall is terrible. I always say "please hand me that thing" or "put it on the thing" or "I cleaned the thing today". Hubby gets frustrated with it, but he's much better than he used to be. Before we knew what was wrong with me, he used to get extremely frustrated with me & it would cause arguments because I couldn't remember what things were called, or I called certain things by a different name. I haven't been able to take my brain supplements for months as money has been tight, I haven't been taking many of supplements I was. So maybe once I start them that area will once again improve. I will be ordering them all again soon & see if that helps. I am also going to try cordyceps (it's a supplement) to see if that helps with anything as it's supposed to help with adrenal fatigue. I really should start up Lauricidin again to fight all of my viral infections, but it's hard to want to take when it makes me feel worse. And I have plans coming up. Including my 1 year wedding anniversary.

I want nto nnnmnnnmnbnggfgfgfgffffffffvvv

That was my crow helping me type this. I took a picture. I will try to figure out how to post it. I got a new phone & can't remember how I had it set up last time to be able to post pics to my blog.

Anyway, just hoping that a lot of my word recall comes back. My muscles have been improving though, so that's good!! I tried yoga the other day from Fitness TV and managed to get through 8 minutes. Wowee. I thought I'd be able to do the whole thing. Nope. But I can walk a couple miles & clean the crap out of my house, no problemo. So........
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