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Tuesday, June 16, 2009

Scary Truth

I have a friend named Makayla who has gone through a lot with this Lyme Disease and Chronic co-infections, etc. She recently posted on a Lyme Disease Support group through Yahoo Groups about an incident that occurred. I wanted to post it here so that many more will see the seriousness behind this illness. It makes me question why no one can believe us when it comes to our serious condition! What if her mother hadn't shown up right then? Yes, read on!

Hi Everyone,
I wanted to send you all an email, sharing an experience I had last night. I have Lyme/co-infections, as well as MCS (Multiple Chemical Sensitivities) . There for I wear sunglasses (light sensitive), earplugs (noise sensitive) and a mask (chemical/fragrance sensitive).

So last night around 9:15 p.m. my mom and I were coming back from a doctors appointment trip, and the car needed gas. With my MCS I can't be in the car when my mom is fueling up without getting a huge reaction which affects my airways. So my mom dropped me off at a park, which was down the street from the gas can see the gas station and park from each other. She wanted me to take our pepper spray with me, since I am sick and for protection. So I had my sunglasses, earplugs and mask on. So I am waiting for my mom, and a police car drives up. 2 police men come out of the car, and ask me what I am doing. I told them that my mom was down the street getting gas and that I have MCS... I can't handle the fumes from the gas. One of the policemen says "Right" with the tone of "Yeah Right" didn't believe me. Then they pointed there flashlight at me and I flinched...light sensitivity. And then of course they have fragrance on them, so I was reacting and my lungs were burning and I was having a hard time breathing. So I told them, that I was about the step back, because I was reacting to their laundry soap. And the police man says again "Right" in the same tone as I stepped back, and they stepped forward. Then I showed them the pepper spray that I had in my hand, like you can see it if you want. And he asked why I had it, I told him 1) that my over-protective mom told me to carry it and 2) because I am sick, I have Lyme and well to protect myself if something happened. He then say "Right" again. Then he asked if I was from around the area, and I said "No, I am traveling home from a doctors appointment, and my mom and I are on our way home." So then one of the men asked if I had ID, and I don't drive so I don't have one. So he asked me for all my information, gave it to him. And I see my mom pull up, and I say there's my mom. She runs out of the car yelling "If you have Cologne on, you are causing her damage." And telling them all that I had before. That I have MCS and can't be in the car while she gets gas, so that is why I was at the park. And everything else that I told them. Then they allowed me to go and say "Have a Goodnight", and I got in the car, put my oxygen trying to help me breathe better. And took all the detox agents that I had.

Let me just say my legs were trembling, and I was scared. Getting approached by police is scary, especially when you aren't doing anything wrong.

Anyway the point of this story, is that every Lymie or person with MCS should have a note from their doctor in their wallet/purse/ pocket that says that they're sick, and if you wear protective gear..the reason why you wear it. Something to protect yourself. Maybe get a MediAlert. It might help if you come into a situation like I did or something similar.

Later, Makayla

Me: What? As tears roll down my face, how come they didn't respect her serious condition? She is no lire, no one to be taken as a joke! No one should be disrespected in this way, by anybody else.

Thursday, June 11, 2009

Bicillin Injections

Last time I posted I was on a cocktail of herbs. I was taking about 35 pills daily. We determined that i was not getting the right improvement from the 'just herb' regimen, and we have chosen to add something to that!

I am now doing Penicillin Injections, which are a painful way of doing things but for some people can be more effective. They are deep intramuscular shots, so they are not like the oral antibiotics and are believed to be more concentrated, and they enter the body differently. might as well try it, right? Well this I have found to be pesky. I don't feel any better, my butt or 'hip' is always sore on one side or the other, and it's a shot every other day during the week! [The actual shot (for those who wonder) has a 1 1/2 in. needle, 2 CC.s or 2 ml. of thick ABX fluid, and is 'deep' muscular, meaning it is a very large shot. To give a comparison, the painful Tetanus shot is 1/2 CC of that painful fluid, this is four times that of a painful thick fluid. it also has 1/2 in. longer needle..... You can tell it is painful and long.] I requested for us to try the intravenous antibiotics, meaning the PIC Line, or IV fluid that goes directly into either my vein, or my heart. However we must try every other approach first!

I will be going back to my LLMD on the 17, so we'll see what he says about our check-up from the injection therapy.


Heavy Pill Load

One thing that Lyme Disease pushes you to do is take many supplements and medications! This is something we all have to go through. It's stressful, and very pesky, but important to keep every system of the body working right, because there is also Lyme patients that don't do so well unless they get their pills! ;-)

I personally can relate to LOADS of pills, and the cumbersome task of swallowing every one of them, up to 5 times a day! Most of these include the supplements, vitamins, and herbs required to fight Lyme naturally. Others may be for assistance in the gastric system, organ function, or are just prescription medicine for different symptoms. I remember the day when I was told by my MD (this was when I was very young, before Lyme) that I would start swallowing pills from now on! It seemed like the end of the world!

I never could have prepared myself for the place I am at now with my professional pill taking skills! In the beginning it started under 10 pills a day, and when we reached 10 it was scary. As doses rose and kept the pill count climbing, it reached 11, then 15, 20, 25! We were shocked as we were told to take more and more types of pills, and the count varied, and rose again to 35 pills a day, and finally we decided to stop counting. As I now am at full doses of multiple herbs to fight the Lyme, and others to fight Co-infections, some to improve Liver function, and lower levels of acid in my stomach, and others for basic vitamins, it has become necessary to upgrade from the biggest pill box CVS was selling at the time, to a custom made box. A bead box that is MUCH bigger and labeled here at home, with much larger slots too! :-) The sad part about the upgrade, is that in the new box we have a tally of 61 pills every day! That averages out to about 15 pills per serving, and I have my 'pill meal' 4 times a day.

On a positive note, what a way to lose weight! Why don't we all just switch to pill diets! I am so full by the time I'm done this tedious task that I have learned to only eat about 2/3 of the proportion I could have ate. Then I still give myself 15-30 minutes for my food to settle since they make me so nauseous!

As you can tell I make fun of it, but when the moment comes to load my stomach with this number of pills I am not thrilled, in fact more annoyed than anything!

Sadly but surely, I can relate! So to those of you pill taking warriors, it's okay!

Monday, June 1, 2009

About Me, so neat!

This is a GREAT article explaining what I am doing and I encourage all who can to read it. It is so wonderful to hear things like that said about ME!!!

I am very excited about this, so please take the time to read through this young ladies blog!

Thanks so much!