Thursday, November 25, 2010

Happy Thanksgiving

Hi all.  I hope everyone has had a wonderful Thanksgiving with friends & family.  It's just me and the husband.  The kids went off to Glamis to go dirtbike riding with the rest of hubbies family.  I knew I wasn't going to be up for it health wise, so we declined.

I have been away from blogging because Rhett, my corw picked the keys off the laptop!!  My husband doesn't really let me use his computer much, so I decided to do a quick post while he is watching TV.

Not much has changed as far as lyme is concerned.  I am having good days.  I had 2 good day recently.  Sunday & Monday.  That was nice because we celebrated Thanksgiving Sunday with Adam's family & then Monday my bestie Angela & I went to Beverly Hills to my doc appt & ended up going to lunch at Urth Cafe.  It was SOOOOOO good.  Organic, local delicious food.  We ended up getting kinda trapped in the elevators & a little lost, & then locked in the stairwell when we decided it best not to get on the elevator again.  But boy that was a mistake, got down 4 floors & had to walk back up the 4 floors & banged on the door until someone let us in.  What if there was a fire???  Sheesh!

Anyway, I am DYING to see a natural doctor.  I need to add something to my protocol.  I need to treat my whole body, not just an infection.

I don't know if I mentioned that my insurance cut me off on November 4th.  I was prepared because I think my insurance company was getting suspicious that my doctor was treating lyme.  Well, I had InfuSource lined up for $30 per dose IV.  So that's $60 a day.  Then I get a letter saying that they knew I had lyme & that they were going to retroactively deny me.  183 doses & 20 nurses visits.  This was AFTER they had approved.  They decided to deny 2 months back.  They can do this?  The cash price the infusion company charges if insurance is not covering is $95 per dose.  You do the math....  $20k is no money I have.  We have already maxed out all of our credit cards treating my illness as my insurance had never pitched in 1 red cent until the IV.  I am thoroughly upset with Anthem Blue Cross of California.  I don't have the mental capacity to fight them, and they know it.  I wish I could cancel my policy that I pay nearly $250/mo for, but I need it just in case of an emergency with my PiCC line & if the lyme causes other problems to my organs, etc.  There are so many things I need to do, but I have sunken into depression because of all of our financial problems.  Financial problems breed other problems.  Many more problems.  I'm afraid that we will lose everything.  If you are disabled by lyme, the government turns it's back on you.  I was denied disability twice already.  The IDSA is bullsh*t.

Monday, November 8, 2010

Frustration and to be honest, a little fear...

I am getting really frustrated being stuck in bed the past 3 days.  It's bad enough when I am just stuck on the couch.  I don't get it because when I first started the IV rocephin, I was the best I had ever been.  I had a GREAT 2 months.  I had even started exercising again.  Then I crashed, hard.  Scary hard.  This was around the 12th of September when my lyme cycle hit.  When I started pulsing, I started to feel better again right away.  I even had a few good days in a row.  And my muscle weakness that had returned had disappeared again.  YAY!  I have done 3 pulses over the past 3 weeks.  I herxed on the 3rd day of the first pulse, then had those 3 good days.  Then on the second pulse, I herxed again on the 3rd day.  The day before the herx I had a good night & went to my nephews birthday party & felt pretty good (nights are always easier on me).  I also made it to my step son's baseball game (night).  But that's it.  Since then, I started my lyme cycle & just finished my third pulse.  I herxed again on the 3rd day HARD.  This was my biggest herx (other than the early treatment herxes) and I laid in bed miserable all day.  My husband was gone, I can't remember where he went.  But I laid in bed all day & went downstairs only when I was desperate enough for something to drink & eat.  I waited as long as I could hoping my husband would come home soon & either bring me something to drink or feed me.  Luckily there were leftovers downstairs that only took a minute to heat up in the kitchen.

Well, now I'm telling a story.  Oh well.  Anyway, I just want to be able to get out of the house and on days where I just have fatigue (I can get up & clean & cook dinner in spurts) I want that to go away.  The only time I have energy to do anything is at night when my family is ready for bed!

I am just wondering if I am ever going to get better.  If I stop the drugs, I'll just deteriorate again & get worse.  But my insurance is most likely going to cut me off soon.  I also need to get co-infections tested, but I have to pay for that out of pocket & we can't afford it.  I just know that if I don't treat the co-infections, the lyme can't go away.  The only testing I have had was through the standard labs & you cannot count on them.

I want to try something natural as well, but there are so many things out there and no studies to back what they claim to do.  I want to go see Dr. H up in the Bay Area, but he charges $650 per hour!  LLMD appointments are usually at least an hour.  I feel like the amount of money they charge is unreal.  Especially for people disabled by lyme.  Knowing that most of our care is paid out of pocket.  In the meantime, I will try to save some money to go see a chiropractor in Yorba Linda that does ART (muscle testing) to see which naturals & antibiotics my body needs.  She had lyme herself & treats a lot of Dr. H's patients down here.  I need to save up $275 cash in order to see her.  Oh bother.....  Lyme disease is a rich persons illness.  You only get better if you have money.

Thursday, November 4, 2010

I missed my doc appt today grrrr....

I was supposed to go out to Malibu today to see my doc & update him on how the pusling is going.  Well, I woke up (not easily), infused, ate breakfast, got out of bed, and my stomach was so upset & didn't know what was going to happen, so I called & cancelled.  It was difficult to wake up, I was still dreaming when the hubs came in to wake me up (my benedryl probably hadn't worn off completely yet).  Then I popped a valium & went back to bed only managed about another hour of sleep because my chihuahua wanted to go play with the crow (aka eat his food).  I am mad at myself now because it was supposed to be 80 degrees at the beach.  I LOVE the ocean, just couldn't get going.  Grrrrr.  I'm mad at myself.  My stomach is better, don't know what was going on.   I know I have been eating like crap, my diet is now worse than it was before I got sick!  I used to be much healthier.  So no more dessert.  That's a good start.  I finished off the brownies last night so there wouldn't be any left today ;-)

The pulsing is going well.  Last week I started my 2nd pulse.  I felt like crap again on the 3rd day, so I assume I was herxing again.  YAY.  I didn't feel nearly as bad as the first week.  That was a kick ass herx!  No seizures or anything, but some good pain, weakness, HEADACHE FROM HELL, stomach ache, etc.

Today is the start of my 3rd pulse.  I think pulsing is a great idea.  I am feeling better in general.  Not great, but better.  I need to get out & walk every day now that I am feeling better.  Should probably jump on my mini-tramp too, but I never know if I feel good enough to do it.  My muscle weakness is gone again.  I'm not sure if it's 100% gone, but the profound part is gone.  I'm still fatigued though because I lay around.  When my fatigue is gone, I am up, out & wanting to do things (usually at night).  THANK GOD & THE UNIVERSE! 

I want to see this chiropractor turned, I don't know, naturopath-type-doctor.  She is in Yorba Linda, but she is $275 for the initial consultation.  GRRRRRR...  money would be nice right about now.  If insurance cuts off my rocephin, I'm screwed.  Totally SCREWED.  I want to see her because with lyme, you need natural aspects, natural treatments & detoxifiers, etc.  She also does ART (muscle testing) to see which drugs would benefit you the best in treating your lyme. 

Wish this real estate market would pick up........  wish I could get a job........... wish disability didn't deny me TWICE!