Saturday, August 28, 2010

Feeling put aside

Feeling icky is tricky with friends and family. Lately I feel really put aside. I am not sure if people are doing it on purpose or not but it's how I feel. I think sometimes people don't want to invite me to things or plan things with me because I am not feeling well. I suppose that's understandable but still really upsetting and hard not to get hurt by it. I still like to be invited and I still like to be involved in things. Just because I am sick doesn't mean you have to shut the door and not let me in. I don't feel sick everyday and have much more energy than I did even a month ago. I know I still can't do as much as the average person can--going to the State Fair would be way too much movement and people for me to handle, going to the bigger malls is the same thing and gets to me, etc. But what's wrong with just hanging out? Can't we just relax and catch up and just enjoy each others company? I am just feeling really down about how people treat me sometimes and needed to vent! Wish it wasn't like this!

Thursday, August 26, 2010

Appointment update

Saw my lyme doc today. She is happy with the progress I am making and is hopeful for my future. We added two more drugs to the mix and am starting to treat co-infections. I am having trouble lately with air hunger and breathing issues. No matter how many deep breaths I take I can't see to get enough air. I can also feel my heart skip a beat or feel it flutter, not something you want to feel! Both are common issues with lyme. Air hunger is a classic symptom of a co-infection so hope the new herbs helps to get rid of it!! Sauna treatments are up to me now, I know it works well--too well! I don't know if I can handle that much herxing again, scared to try!

HotPak Huggies

My daughter has a metabolic disorder called MCAD, she tends to have a hard time controlling her body temp and has one of these stuffed animals. She has the turtle since its larger and can cover the most area of the core body. It helps her cool down when she gets really hot and made me think...these would be good for people with Lyme Disease! I have a hard time controlling my body temp too and over heat easily, never used to be that way. Check out the link!!

http://www.hotpakhuggies.com/home.html

Friday, August 20, 2010

A challenge for you

I have a challenge for all that read my blog. I challenge you to get someone in the health care profession to watch the documentary Under Our Skin. It will only take a couple hours of their time and will provide a lot of education. We need to get the word out about this horrible disease!!! The health care field is not educated enough about this epidemic!! Watch this trailer....



Paying the price

I usually can make it about 2 weeks on my strict diet and then break down and eat something I am not supposed to. This month was the best sticking to it and feeling better about food. I caved and ate "normal food" on my 7 yr wedding anniversary and then again yesterday. The anniversary didnt effect me too much, yesterday did. I feel horrible right now. Bad brain fog, sooooo hungry, dizzy and light headed, feel like poo. Its my own fault, but it still sucks. I just want to feel normal from time to time and eat normal food. But its not worth feeling so nasty. Seriously, who's legs forget how to go up a flight of stairs! I kept tripping because my legs wouldnt listen to my brain signals. Foggy!!!!! Annoying!

Thursday, August 19, 2010

Tuesday, August 17, 2010

80-90%

I have made it 4 days feeling about 80-90%!!! I felt really awesome the first couple days and then the pain started to set in but I still felt really good and didnt let it get in the way of what I wanted to accomplish. Right now I feel pretty nasty, I started out great this morning, just tired but now its hit me. BUT I had FOUR days of feeling awesome!!!!! Cant beat that! I hope it gets better and better! 3 months of treatment down!!

PICC line dressing change

A lymie that I know showing her Picc line dressing change. I find the whole thing interesting since I havent had an IV or Picc line yet for my Lyme and thought I would share with who ever wanted to see what its all about



Friday, August 13, 2010

Energy!

Our bathroom has been half primed for probably 6 months or more. I just never had the energy to do it and I knew my joints would be so painful afterwards. Then once I started treating the Lyme there was no way I had the energy or felt good enough to even think about finishing! Yesterday I had enough energy to finish priming, get one coat done AND go to 3 stores that evening! Wow!!! Thats awesome, especially considering I was herxing earlier in the week. I am taking this as a good sign and that my body is starting to be more evened out. Of course I am super tired today and sore but I dont think I am much more sore than the average person! Wooohooo!

Tuesday, August 10, 2010

Herxing

I havent really had a bad herx in a while, well not a while really but the good days are more often. I was herxing pretty bad on...I think it was Sunday. The days kind of blur together. Was in a lot of pain, felt really sick and nauseous, headache, dizzy, and totally drained. I have been really good with my diet so I dont think it was related to the "bad foods", I think just die off. Which is good, just a pain to feel so nasty. I get scared I am going to pass out or have a seizure when its just my daughter and I at home and she would have to fend for herself. When I feel like that I put a open bag of crackers on the table for her just in case! Luckily I dont feel like this when I am working and have a house full of daycare kids. Yesterday I felt pretty darn good and now today I am feeling pretty crappy again. My herx days seem to be getting shorter which is nice but strange to me it would be an every other day type of deal. Last back herx was for an entire week. Fine by me to break it up a little, the good days mixed in makes it seems easier to get through. I am almost done with 3 months of treatment, wonder how many more months I have...

Friday, August 6, 2010

Brain Fog

Feeling like poo today and I have the worst brain fog. Anyone want to switch heads so I can actually think straight?!?! Here is an article on brain fog I found--


Lyme Disease Brain Fog
By Leslie Buterin, The Lyme Lady


Wednesday, August 4 2010

The first time I heard the term brain fog I was in my doctor’s office. The instant I heard that phrase I cried. I cried because finally, one medical professional, took my symptoms seriously and gave me the words to describe what I was living with day in and day out, a seemingly impenetrable brain fog.

For literally decades I had told physicians and psychiatrists alike that my head felt stuffed full of cotton, my brain felt numb like I was under ether. Those same professionals asked me to communicate more clearly. Unfortunately, those words were the best words available to me at the time and the doctors did not seem to have any other words to help me clarify further.

Strong communication skills were required for my profession. So, why was I beginning to stutter? What was I supposed to do on the days when I could not put two words together? Why did I have to search my mind so hard to find the correct word to use in a sentence?

When folks asked why I rubbed my forehead so much, I told them I was doing my darndest to clear the fog. Little did I know I was so close to a term that is significant and meaningful to Lyme literate physicians. That wonderfully descriptive term - brain fog.

As it turns out, the same process that causes brain fog is also the culprit for a long list of other Lyme-related symptoms in the brain, such as migraine headaches, itching head, sinus infections, ugly dreams, narcolepsy, insomnia, even pimples of all things.

If you are like me when I first learned these symptoms were all connected, I found that hard to believe. But I was curious as-all-get-out and wanted to know more. My doctor welcomed my questions and I was not the least bit shy about asking them.

How could all of these seemingly unrelated symptoms be attributed to one disease?

Lyme and Lyme-related co-infections thrive in brain tissue. As they live and multiply, they create infection(s) that in turn cause quite a disturbance in the brain.

Infection leads to swelling of tissue. Since the infection begins in the brain, the tissues in the head swell. Swelling in the head causes sinus problems, frightful dreams and painful headaches.

As the body tries incessantly to rid itself of infection, it uses every means available. This includes trying to push infection out through the skin. When the body can not eliminate the disease through bowel movements, the body eliminates through the skin frequently resulting in Lyme-related pimples on the face, back, chest, even arms.
Granted this is a simplistic explanation. Rest assured there is a quite a body of knowledge that explains how and why Lyme disease and related co-infections gunk up the brain. But for our purposes, we will keep it simple.

Simply said, the head is supposed to be disease-free and safe-place for the brain. As disease enters the head, the brain can no longer function the way it is designed to function. For example, the brain tries to send signals to cells, however infection makes it impossible for the electric impulse to travel safely to those cells, the cells do not receive the signals they were supposed to receive. A lot of thought is lost in the process.

If you are living through this process right now you will nod with understanding upon hearing the term brain fog. I am glad to report that with treatment the fog in my brain has cleared.

Forward this article to friends. They will thank you for it!

Monday, August 2, 2010

I am running out of food options

This whole food topic is annoying to me. I am already restricted and keep finding more foods that bother me, grrr! I am not supposed to eat any grains, dairy or sugar. Apples make me dizzy, I am allergic to carrots, celery and watermelon, sensitive to bananas, and now just discovered cherries make me dizzy and give me a headache! Come On!!! I am running of out things that I CAN eat! I suspected for a while that cherries made me dizzy but I couldnt tell if it was food related, meds related or herxing. It was pretty darn clear to me today, no more cherries!

Sunday, August 1, 2010

Update

It still amazes me how fast I can get worn down. I am feeling pretty good these days, dont get me wrong the pain is intense but I would almost rather have the pain than feel like I have the extreme case of the flu all the time. The other night I was just laying on the couch and pain was shooting from my hips down both legs and back up. It was painful! Thankfully the next day wasnt so bad. I took my daycare kids to Como Zoo and I was dead tired for two days after that! I am still glad to get out of the house and go somewhere fun with the kids but sure wish I could function like a normal person! It may be my own fault since I wasnt very good with my diet this last week. I am having a hard time sticking to it these days, it plain old sucks be SO limited on what I can eat. But I have to remind myself of the pain I will feel if I dont stick to it and how much harder my body has to fight off the bugs. I can totally tell right after I eat sugar how hard my body is working compared to before eating that junk! I have been dead tired all weekend and cant seem to get enough sleep. I am thankful my daughter still takes naps and I can sleep when she naps! That helps A LOT. Not sure how I would make it through the weekend with out those naps! I did some yard work with with the hubby tonight so a little worried what tomorrow will bring but right now I am feeling decent. Thankfully I have acupuncture for the next couple of weeks to help me out! And the chiropractor does wonders!!