11/10/11

11/10/11. Looks like a good date to me. That was the date I saw Dr Jemsek. The dr I am sure is going to change my life. He thinks I will be better in about a year. More importantly, I think I am going to be better in a year. Since Lyme and the co's can create so much inflammation within out bodies creating pain whenever and wherever the inflammation starts, and it destroys and confuses our nerves and nervous system, he started me on a two week 'pain' plan. One of the things I started on was Lyrica. Lyrica seems to be doing GREAT things for me. I am also on MANY supplements- I was on a good supplement regimen before, but he added several really important things. It didn't take long for my pain levels to drastically reduce- and for the past two days, I have been moving. This includes going up and down lots of stairs, carrying clothes, small boxes, etc! Luckily my dad, one of his friends, and my brother took the heavy things. I am still very happy with all I was able to do. Even though I am so sore today, it's more of a 'normal' sore than the pain that just comes whenever and wherever the spirochetes decide to attack. I'm supposed to start my plan of attack with my meds tommorrow (we are going for babesia first), but I'm going to start Tuesday. I am giving a presentation with my group tomorrow (Monday) and I do NOT want to be throwing up in my nice outfit. Not that I will definitely be nauseous or throw up, but some of the meds he's starting me on I haven't been on before and I do not want to have an unpleasant reaction about an hr from home. So Tuesday is the day. It's very good timing for all of this, my second to last semester of part time BSN work is wrapping up,  and Christmas break will be here before I know it. I will be able to start with all of my focus on this new treatment and only have to worry about getting my butt to work 2days/wk. I think I can handle that. I am very excited to begin although I am DREADING drinking mepron again. Blehhh. I'm going to pretend it's a thick shot of something yummy. Here goes nothing! :)

update: when you're going through hell, keep on going!

Sooo, I've been MIA for a bit. When I get very scared, I sometimes isolate. In this case particular-- I had no answers for what was going and and therefore felt kind of crazy and had no answers for others. This all started last Monday morning, about 6 am. I awoke with a weird feeling in my stomach and went to the bathroom. The next thing I knew I hit the floor with a severe, stabbing pain in my stomach. My legs, hand and face went completely numb and I almost passed out. I crawled to my phone and called my dad- "I'm scared. Come over." It felt like an hr, but he got there. I managed to make it to the car and headed to the ER. Half way there the pain seemed to let up. By this point, I had decided I must have had an ovarian cyst rupture. I decided to go home and make an appt to see my OB GYN and avoid the ER at all costs.

I saw my ob gyn and after a vaginal ultrasound (Ouch!!) they determined a cyst had ruptured bc of all the excess fluid and gave me pain medication. I was still doing so badly my doctor offered to have me admitted to the hospital for IV fluids and pain meds, but who wants to go to a hospital if they can avoid it? I went home. I took my meds as ordered, and Tuesday I started feeling better.

Wednesday morning, shit really hit the fan. I awoke with a fever of 102 and terrible chills and more stomach pain. Off the the ER. There they ran blood tests, another ultrasound, filled me up with morphine and determined nothing was wrong and sent me home. Even though the morphine had barely touched me (and I am usually very sensitive to things) I figured they must be right so I listened. They said I would be fine. Later that day, I started to become delirious and my dad begged me to go back to the ER. For those of you that know my dad, he is very laid back. I scared the crap out of him. So I tried a different ER this time. This time I got a CT scan. NORMAL. Wtf. Seriously? What is going on. They next day I talked to my OB GYN again and she thought I was having a missed appendicitis and wanted me to go back to the ER. After two visits in one day, in my mind there was NO way I was going back to the ER. I was popping my pain pills like candy and still in excruciating pain. I was ready to throw the towel in. I never got depressed- but I was so very sad and frustrated. What if this was a new Lyme symptom? Everything else I have gotten through, but I didn't think I could go on like that.

My parents were amazing and very supportive. I know they were very scared. Monday I had an appt with my FP Dr who is treating me for Lyme. She could tell something was very wrong with me. She talked to my ob gyn (they are in the same practice) and they both decided I needed to go back to the ER and try to get an exploratory laproscopy. So off to the ER I went. They wait was going to be at least 4 hours. I was trying not to take anymore pain medicine for a proper assessment and I thought I was going to die there. Both of my doctors thought it was appendicitis and one of my doctors had called ahead trying to get me in quickly. Unfortunately, Monday's are bad days in the ER. There were a number of traumas and other people very sick. Finally, after sitting for 3 and 1/2 hrs, I started bawling hysterically and almost passed out. This got me a bed in the HALLWAY. After being assessed by the doctors, I could tell none of them thought anything was really wrong with me. Luckily, my doctor called me when I was talking to a Dr in the ER and I don't know what she said, but she got me admitted. After 6 hrs of hell, I was taken to a room in the observation unit. Luckily, I had a very nice nurse. I had another CT that night. CT's are scary to me, and I just imagine all the radiation going into my poor body. My body was already polluted with so much pain medicine.

The next day, I was told I was basically impacted. The pain meds had pretty much stopped any flow in my body. The dr's figured that was it, so they ordered stuff to make me 'go.' Wait a second. I went through all of this bc I needed to (excuse my language) SHIT? I don't effing think so. Many of my labs were out of whack too, nothing scary though. I was so lost and confused.

Later that evening, I finally got my answer to EVERYTHING>> Epiploic Appendagitis. http://radiographics.rsna.org/content/25/6/1521.full

Very uncommon, so of course I'd get it. But I was SO happy! It fit my horrible symptoms perfectly. And better yet- it resolved itself. I could go home and NO surgery! Thank the dear Lord.

Today, I am feeling much better. Still sore and some minor stomach cramping, but I am walking upright again. I put on mascara. I'm not pale and sweaty. I'm not throwing everything up. I ate a little. What a difference! Even though this week was pure hell, it did make me realize something. I live with chronic pain and random weird symptoms bc of my Lyme disease. But I am functioning. I am still able to do a LOT and for that, I am so grateful. It was almost a little wake up call to yank me back into the moment and appreciate being able to eat, sleep, shower, drive, work (even the small amount I do) etc. It showed me how my parents will be there through anything. Although my mom did say next time she is in the hospital with me, there better be a baby at the end. HA. My friends that knew about this were amazing and supportive as well. My boyfriend came on the last day so he 'luckily' got to miss most of the madness. I am just so happy. I am going to get back on my healthy healing path now. And I hope I never have to look at a pain pill again, haha. <3 <3

positivity!

the POSITIVES of lyme disease (and lovely co-infections):
the strength i have found within me
the amazing people brought into my life- both lyme and non lyme
having my dream job where i actually have the TIME to make a difference and help people :)
knowing that i have stared down the fear of dying and by the grace of God, overcome it
the knowledge i now possess about my own body and disease processes
just being able to just laugh about it sometimes!
being able to cry about it- and always having so many people to listen! not only listen-- but UNDERSTAND
finding out who my true friends are and making many new ones :)
so, in a weird way, im grateful. 
For when I am weak, then i am Strong <3

a break

Yesterday I made a decision to take a break from Lyme. I know many of you are thinking, how in the world are you going to do that?? Well, for starters, next week I get my week off from antibiotics and I always feel a lot better off of them (no herxes!). I have plans to have fun and get out of the house. I am going to enjoy next week. I am also taking a break from facebook. I need a social hiatus. I need to actually see my friends, not just their updates. Who knows how long I'll be gone for- a week, a month, longer? I know it feels right to disconnect from the internet world for a while tho. I need to focus on my actual 'real life' relationships, and myself. I need to find more balance in my life. Health and happiness is the ultimate goal. Sometimes I feel very far away from it, and sometimes I feel very close. I'm going to focus on feeling close. I am going to meditate. I am going to plan fun things to do and do them. I am not going to use the word Lyme for a week. We'll see how this goes. I'm quite looking forward to it. 
:-)

good day :)

so far, today i am feeling pretty good! I get to lay in the hyperbaric chamber tomorrow and get PT as well. Tonight one of my doctors is giving a gluten free diet talk and I'm excited to get to go listen to it. I actually am getting paid to go listen! The doctor I work for and his wife (the one who runs the office) encourages learning everything I can. How awesome! Then I work Thursday, and have the entire next week off to hopefully catch up on some cleaning, and maybe go do something fun!! it is also much looked forward to week OFF of the abx. My body will be very happy as I feel some yeast creeping up on me. I am chugging Kefir and taking my probiotics but sometimes it can be difficult to keep in control :). Today, I am going to stay in and rest as I am still very tired. I feel my body doing some hard work- fighting off the bad guys. I had to literally FORCE myself to do some yoga yesterday. I was so tired after work, but it ALWAYS makes me feel better.
This is my favorite, quick, routine: http://www.youtube.com/watch?v=Qc4w9GN4xME
I love her Irish (i think?) accent and her calm voice.
Hope everyone else is hanging in there as we are all in this together!


also i made an appt to go see Dr Jemseck in Washington, DC- any opinions on him? I've heard mostly good, but yesterday heard some not so good. Any feedback would be awesome!!

emotional roller coaster

Today I am more focused on the emotional aspect of this disease. The emotional toll this takes on us is just as bad as the physical. For me at least, this has been an extreme emotional roller coaster- at times, I'd even say disaster. I went through so many years not having any clue what was wrong with me- then diagnosis- to relief of having diagnosis- to questions- to anger- to confusion- then a really wonderful, good day- and then back to square one. At one point, I had to force myself to STOP the googling about Lyme and it's treatments. I was overwhelming myself with all of the different perspectives and had no clue what to make of it all. I've learned after about 7 months of treatment, to really listen to my body. I have two amazing doctors who really care about me and my outcome and LISTEN. So many wonderful people have come into my life right at the 'right' time and I know I'm on my right path to physical wellness. But we have to make sure the emotional wellness is there too. Therapy has helped me some. My family is very supportive. My boyfriend has yet to tire of me. But really, I have to be in charge of my happiness. Meditation, bubble/epsom salt baths, and yoga seem to help in centering me and bringing me back to the present moment. I've found I get so lost in the "when I'm well again, I'll do it," I forget to actually live in each moment and appreciate it for what it is. Deep, huh. Hah. 
When I'm in pain, I'm the first to admit it- I can get MEAN. I do not like to be touched. I do not like to be asked if you can get me something. I zone out completely and just simply try to get through it. I imagine that can be really hard on those who love me. I just need space, and I always come out of it.


I'm going to finish this with a 'recipe' for a good, detoxing bath:


2 cups Epsom salt
1/4 cup of baking soda
1/2 cup hydrogen peroxide


I always add some essential oils- lavender and peppermint are my favorite. Enjoy! :)

BLAH!

today started off as a good day.. and now i feel awful. shaky, in a ton of pain, in a fog. i worked and enjoyed my day thoroughly- talked to my wonderful patients (some lymie too) and was really doing okay. im on my second week back on abx tho- i should have know this was coming. it hit me like a ton of bricks. luckily, my work day was soon over and i immediately got in the infrared sauna to detox the junk in my body. im home now, cuddling with my amazing doggie. i need to get in the shower to wash all of these toxins off, but i cant seem to make it up the stairs just yet. what a rollercoaster this is. i just have to remind myself in these moments that i am now having more good days than bad, im blessed to even know what is wrong with me, and "this too shall pass." it will. the doctor i work for today was commenting on the fact that he is reading and learning more and more about heavy metal toxicity in many of our lymie bodies. and for many, to heal from the lyme, you have to remove these toxins. i made an appt with him to get mine checked- if any are high, chelation therapy is the answer. i got my food allergy test back tho and i'm lucky there. no real problems! he still said to be gluten free as that part of the test is highly unreliable. gluten (and dairy) are both highly inflammatory foods and lyme, essentially, is a disease of inflammation.
"my strength is my perfect in my weakness." my strength must be getting pretty perfect here lately.. ;)