Wednesday, August 18, 2010

Almost 6 weeks into Rocephin

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.

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.

He was a baby then.....
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........

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........

Tuesday, August 3, 2010

Video of me having my PiCC dressing changed.

Doing my infusion, hubs didn't turn on the flash & we were in the middle of cooking dinner so my kitchen is a mess.
Flushing the line.  You can see the sock on my wrist that I cut for a PiCC cover.


This is  Dry Pro PiCC cover.  Doesn't work for me.  I was hoping I could go swimming, but nooooo.  Mine leaks.  So no showers.  I just sit in 2 inches of water & bathe.  And to wash my hair, I do it in the sink.
So I got my PiCC (as you know) and the first 2 days. No pain what so ever! Then I slept on it. OWIE!! So I had throbbing pain for day & then didn't sleep on it, & it lessened a bit. Then I slept on it again. UGH! This sleeping thing is hard to do since I am a side sleeper & my favorite side is the side my PiCC is on. Go figure. Also, we have this ugly itchy, scratchy, tight gauzy thing they give you to cover the line. It's too tight & I only have 8 inch biceps! How do normal people wear that? Sheesh. So from the Facebook friends that have come before me in the PiCC/lyme treatment, I got some good advice:  Get a sock & cut it.  So I did.  Much better.

I have been away from blogging for a while.  Every time I start to blog, I get interrupted.  But this is a good thing.  That means I am not laying in bed all that much anymore.  When I first started the IV Rocephin, I was sleepy for a few days.  Then I suddenly felt a little better.  Had some strange issue after day 4 where my neck & upper chest felt pressure, but it eventually went away.  And I even felt like I could exercise.  So I did.  I jumped on my rebounder (mini-tramp) 500 jumps.  I was told not to get into the cardio zone, so I stopped & started.  But the next day, I was done.  Haven't exercised since & I think I have only spent 1 or 2 days  in bed.  Today, I had to run up my stairs & I realized it wasn't horribly painful.  So I will definitely work out today. 

I am very pleased with my home health nurse.  He is awesome & so knowledgeable about the world.  So he is nice to be around.  I am pleased.  He used to come every day in the beginning.  Now he comes once a week to draw blood & change my PiCC line dressing.  That is something I need to learn how to do on my own though in case insurance cuts me off.

So far, nothing drastic has been noticed, but my symptoms have definitely been reduced.  I am just waiting for my cognitive stuff to clear up.  I would like to be able to recall the names of things again.  :)

I also want to go back to do the MedSonix treatment again.  As I think it truly was a tool in my recovery.  My joints have not bothered me at all since those 3 treatments.  And I think I have only had 2 headaches since.  And both were very minor.

I have had a yeast over growth due to the IV Rocephin & the Biaxin, so I am on 10 days of Duflican & doubling up on my probiotics (when I can remember).