Tuesday, December 27, 2011
Just a little update. I have had a great three days! I felt sick on Christmas day and very dizzy from the incense in church but once I was out of there and got some air and food I felt much better! I was able to clean the entire house from ceiling to floor and still feel great!!! I have been super itchy which usually means I am pretty toxic so need to detox a bit more, but other than that it hasn't been effecting me much. I even got 11 hours of sleep one night!! I got my bicillin injection today so we will see if that effect me tomorrow but so far so good! SO nice to feel good!
Just a little update. I have had a great three days! I felt sick on Christmas day and very dizzy from the incense in church but once I was out of there and got some air and food I felt much better! I was able to clean the entire house from ceiling to floor and still feel great!!! I got my bicillin injection today so we will see if that effect me tomorrow but so far so good! SO nice to feel good!
Friday, December 23, 2011
My night sweats have been off and on but been bad over all again. This night was particularly bad and my hands looked as if I was swimming all night long. Night sweats are an odd thing! I went on a new drug to help but had to stop because it was too intense. Hopefully I can go back on again soon! Babesia is causing me a lot of laundry! :-)
Thursday, December 22, 2011
This is really, really hard to watch and children should not watch it but, it shows the real side of lyme and what it can do to a person when they dont get the help they need. Its a long road to recovery and this young couple shows how strong they have been. Its been a long road for me and I havent been as sick as she has. She is one strong chica!
Wednesday, December 21, 2011
Monday, December 19, 2011
Had my 7th injection today. The needle went right into a vein which can be really dangerous. If the nurse were to actually inject the bicillin into the vein, it could kill me. This is why when the needle is put into the skin they aspirate the syringe to see if blood comes into it. If so they know they have hit vein and need to stop. Thankfully she is very educated and a great nurse. So, she took it out right away and had me put pressure on it while she got the blood out of the syringe and put a new needle on. Second time we were clear and good to go. So today I got poked two times and have two battle wounds but glad it wasn't worse! Onto my 8th injection on Thursday!
Wednesday, December 14, 2011
I have heard it 100 times before. Lyme Disease is a rich man's disease, and it is true! I am so frustrated and angry with the politics of lyme. Why is it so hard for the medical field and insurance companies to except??
Well for one, it's a huge liability for doctors because there are so many treatments, long term treatments, various drugs, insurance companies coming at them left and right, uneducated cruel, hurtful people deliberately trying to shut them down , etc, etc.
Why won't insurance companies recognize it? Easy, because all of the other disease out there that could be lyme-MS, Chronic fatigue syndrome, psychological disorders, arthritis, heart problems, liver problems, chronic pain, Alzheimer...I could go on and on, the list is long-would then be the insurance company's problem and they would have to cover these expensive long term treatments that would cost millions of dollars to treat. Instead they basically say if you need more than 2 weeks of treatment then you really don't have lyme and they will not cover you.
It should not be like this! I should not have gotten to the point that I had to quit my job, we should not be loosing our house, I should not have to uproot my daughter from the only things she has known, we shouldn't have to move in with family at our age. I SHOULD NOT HAVE TO THINK ABOUT STOPPING TREATMENT!!!!! We are broke, and many people have helped us. We are to the point where I may have to cut down my treatments a lot or stop all together. We just can't pay for all of this anymore. I SHOULD NOT BE UP AT 1AM BECAUSE I CANT STOP THINKING ABOUT THIS. I WANT TO GET BETTER!!!! I want to run more than the 20 feet with my kid with out being so out of breath and feel sick. I want to have the option to have another child if I want, I want to be able to sleep all night and actually wake up refreshed, I want to be able to enjoy a party, holiday, get together with out panicking about the cost of whatever is going on. I am making great progress and my doc thinks I will see great results by this next summer. I AM SCARED. I don't want to down slide. I remember those days clearly and never want to have to call 911 again because I thought I was dying and have to take an ambulance ride to the ER. I don't want to go back. SO I SAY SCREW YOU TO THE POLITICS OF LYME DISEASE AND TO THE SELFISH UNEDUCATED JERKS THAT MAKE THIS SO HARD. YOU ARE TAKING INNOCENT LIVES AND IT IS NOT OK! WHO DO YOU SEE WHEN YOU LOOK IN THE MIRROR?
Tuesday, December 13, 2011
Icing before the injection
What it looks like. It's a thick paste
Walking the halls afterwards
I am finally filling you in on my bicillin injections! I think I am up to 5 injections now. I get them twice a week. The process started out drama filled.
My out of town doc wanted to me start the injections after I had been on my new oral drugs for a while, so I called my local clinic and scheduled the injections. Went in as scheduled and they refused to give them to me. Said out of town doc and local doc where not on the same page. Local doc was not aware we were actually going through with the injections and was not aware I was coming in that day. She was supposed to be informed by the receptionist and by the out of town clinic and was not. My chart also stated I was allergic to penicillin, which is in bicillin injections. So I contacted out of town clinic and local clinic to make sure we were all on the same page. Out of town clinic ok'd the injections but local clinic wasn't sure it was a safe idea per the allergy scare. I had taken amoxicillin a long time ago for acne and puked my guts out violently and quickly after taking the meds. Which is what cased the red flag. Like the nurse stated, it probably wasn't technically allergic reaction, but do we want to find out when you are on the table with bicillin being injected into your body which sticks around for a few days and then your throat closes up and we have to jab an epipen into your leg? Mmm, no thanks!
So onto the process to find out if I was allergic. I had to call my old peds clinic from 1oo years ago to see if they had any records from when I was little, of course not, they are destroyed after 10 years of becoming 18. Called the dermatology office and they couldn't verify if that was an allergic reaction or not but the nurse said she thinks it was. I reported back my findings to both of my clinics. Out of town clinic said the only way to be sure was to get a skin allergy test. So I called the allergy clinic to schedule a test. Of course I couldn't get in right away. In the mean time, my mom had taken off work to come with for my first injection in case I had a reaction. Well that went to crap and she wasted one sick day. Then the second time around was coming up and that's when I found out I couldn't get the allergy test right away. And, yet again, my mom had taken off work to come with me for the second try. I didn't want her to waste another day since she is a teacher and its a pain to miss days. I called my out of town doc and explained the situation. Doc there said he thought it would be fine and got in contact with local clinic. At this point three docs all had to be on board and the nurse that would be giving me the injections. They finally all ok'd it and I was good to go to get my first injection before the allergy testing. By this point I was scared to death I was going to have a reaction and they were going to have to jab an epipen into my leg and call an ambulance. They decided it was best to give me a half dose just in case. Thank god things went smoothly and it has been smooth sailing since. Phew, what a pain in the butt!!
So right now I have a nurse injecting one shot two times a week in each butt cheek! My daughter is oh so lucky and gets to come watch each week! Oh course at home see has to reenact it and I get more "shots" at home too! My little doctor! Last week was the first week it started to build up and I was getting nice "goose eggs" in the rear. They are solid and painful! I am thankful I get a week between each shot on each side or it would be really painful! Most of the time I don't even feel the needle go in or the bicillin until we are about to the half way point. Then it starts to burn a little or sting but if it's bad the nurse slows down which helps a lot. I am normally pretty numb and iced up which I think is a big help! Then we walk the halls for 10 minutes to help the meds move around and not gather in a lump and we are good to go.
As of now, per my doc, I will be getting bicillin injections twice a week for a minimum of four months. I have no idea how we will pull that off financially though. That will be in the next post!
Thursday, December 8, 2011
Dear Lyme, babesia, and bartollena- you will not win. My body is your holding house and you are unwelcome guest's. I will fight until YOUR death. You will not bring me down with you. I am a rockin, strong person and you can't break me!