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.. ;)

Under our skin

Just watched under our skin again- and cried some more. I relate to Dana the most. I LOOK healthy (the wonders of mascara and blush, lol). But the pain- and the feeling of my own body fighting against me. It's getting better though :)
The part that struck me the most was at the end, when the park ranger (Jordan) discusses the "phase where you start to get your life back." He refers to it as magic. "I'm so glad to be here- I can't even say." WOW. I will get there-  I am getting there. YES!

a good day!

as time goes on, and i am recovering from my mycobutin mess, i am having more good days than bad. i get about 1 migraine a month instead of the 3-5 a week. my neck and should pain is almost gone completely. now it's more diffuse, herxing/detoxing pain. my hip still hurts a lot, but i can deal with it. some days i have ENERGY! these days mean everything to me. have you ever thought about how much energy is takes to fake energy? a LOT. and we fake things a lot- we fake happiness, not being in pain, not feeling crazy, not wanting to scream. we could all totally get undercover work after this. but now i'm having days where i just plain feel good and want to go out and do stuff. more and more now. and i really love my job- i feel i am right where i am supposed to be! i have the most amazing/supportive boyfriend- i think he knows more about lyme than me sometimes! he is determined to get me all better and his determination helps to get me all revved up and ready to fight some more. i had started to lose hope a few months ago- felt like everyone was sick of me, and the whole while not knowing that the mycobutin was doing bad things to my body. but that is the risk we have to take- some of our meds may make us feel awful, but the most important thing is that we LISTEN to our bodies. antibiotics and the hyperbaric chamber and my supplements have given me my life back. slowly but surely. and i'm determined to keep going and keep getting better! peace love hope and happiness! and HEALTH! :)

ABX! and the things that make me feel better

Main symptoms: Right neck and shoulder pain, ‘migraines’ from right back of neck to side of my nose (sinus area), hip pain (mainly right), constant fatigue/feeling like I’m living in a fog, some knee and left wrist pain

Antibiotics Round 1:

·      Doxycycline 200 mg 2x/day

·      Omnicef 2x/day

·      Azithromycin x1/day

·      3 weeks on, 1 week off for two months

Antibiotcs Round 2:

·      Doxycycline 200 mg 2x/day

·      Azithromycin x1/day

·      Mephron 2x/day (only took for about 2 weeks)

·      Flagyl Th, F 2x/day

·      Other abx MWF, 2 weeks on, 2 weeks off

Antibiotics round 3:

Mycobutin

Omnicef

Azithromycin

Flagyl

same protocal

-- the mycobutin made me literally feel like i was going to DIE> high fevers, the worst pain imaginable, literally feeling like every organ in my body was slowly giving up.. low WBCs and platelets, and then slowly started losing my vision. ER visit- they were actually nice to me and didn't try to talk me out of my Lyme dx! I couldn't believe it- got a bag of fluids and some zofran and toradal.  

after this i took about 3 weeks off of abx to try to calm my body down and get my blood counts back in order. I started working at an alternative dr's office two afternoons a week as well. there, most of my patients are lymie too! how wonderful it is to be able to talk to people face to face about this. 

now i am back doing the doxy, omnicef, zith, and flagyl and herxing! DIE LYMIE BASTARDS ;)

·       

**things that help me detox, relieve pain, make me feel better!! ::

Epson salt/dead sea salt/baking soda bath

Glacial Milk!

Ionic footbath

Infrared sauna

Reiki

Hyperbaric chamber

Nopalea juice

water with lemon 

Juicing!

Gluten and dairy free

NT energy factor

melatonin

December- the medication begins!

1^st week of abx: 12/6-12/12

Monday-Thursday evening felt okay (as long as I took meds on full stomach!)- Thursday evening developed neck pain and I felt like I was getting a migraine so I took an immitrex. Woke up around 3am Friday morning with severe nausea, took a Dramamine and went back to sleep. Mom had stomach flu so I thought maybe I had it? All day Friday achy (shoulders hips neck) and extremely tired. Developed severe migraine that night with continued nausea. Saturday/Sunday still nauseas. Sunday nausea started to subside and right hip pain became worse. I had tried a workout that involved my hips so I was worried I injured it or was it lymes/herx?

2^nd week of abx 12/13-12/19

M- still R hip pain and some neck pain

T- hip pain became progressively worse

W- hip pain- migraine

Th- hip pain a little better, but I slipped and fell on ice

F- bad migraine, felt like I’d be hit by a mac truck- exhausted, sore from fall, hip pain a little worse

Weekend- still some hip pain, still tired, some neck and shoulder pain ®

·      Periods of ears ringing and lightheadedness upon standing throughout week

·      Nausea seems to come about Thursday and starts to get better on Sunday

3^rd week of abx 12/20-12/25

On and off hip pain, ear ringing, head aches Tuesday (crushing headache) Friday (crushing head ache) and Saturday (crushing head ache that led to normal migraine) some neck pain, shoulder pain. Had a new wire on braces so thought that could be contributing to head aches? Sunday felt a lot better and a lot more energy.

One week off of abx- 6 really good days, one h/a

4^th week of abx 1/3-1/7

Increasing neck and shoulder pain, hip ok, not a lot of energy. Trouble sleeping because of right neck and shoulder pain. At the end of most days burning pain and tightness in both shoulders

¼ and 1/8 h/a

5^th week of abx 1/10-1/14

Severe right shoulder pain, lots of trouble sleeping. 1/11 went to PT and Finona said my shoulder was locked- had a massage and pt and ultrasound, felt a little better after. Lots of difficulty falling asleep due to burning pain. After PT felt a lot of relief. Saturday left wrist started hurting- did nothing to injure it. Other than that, not bad!

1/13 h/a




.... at this point i kind of gave up my little diary.. i was just so sick and hadn't seen real improvement- after i started laying in the mHBOT is when i really started to see my symptoms slowly decrease/go away...

12/20/10- ok it's lyme

So apparently along with lyme I have something yucky called ehrlichiosis. I guess that it makes sense but I still find myself questioning everything. I am taking 3 antibiotics Monday-Friday with the weekends off for three weeks, then a week off. The whole thing has me feeling yucky—tired, nauseas, bored. I want a job. I have moments of everything is going to be okay and moments of am I going to feel like this forever? I have always been the kind of person that is fearful of the unknown. Could I get cancer, could my parents get cancer, will my boyfriend be in a car wreck, will my little brother get hurt, etc etc etc. This is a whole knew unknown. Will the antibiotics work? Should I try something else? It’s aggravating. I do still have a lot of positive thoughts for the future. 

11/21/10- Lyme or not?

First of all, I am not depressed. I know how incredibly lucky I am. I have a very supportive family who I know loves me and would do anything for me. The same thing goes for my boyfriend and my good friends. Yet I have days, moments, etc where I feel like it’s just too hard to go on. I sound like a crazy person. Is it the lyme talking? Is it even lyme? I remember the first time my neck started hurting. It was the fall/winter time of my freshman year. I had gone to Pittsburgh for the day to do some class assignment with a couple of friends, and on the drive home the right side of my neck started hurting incredibly badly. It was around the time my school had a couple of meningitis cases, and I joked that I could possibly have caught it.

I remember being at work and the neck pain coming back. This time it would radiate to the sinus area of my right side. The pain would be severe, and I would attempt to ignore it, blaming it on sinus troubles.

These pains only continued to get worse. It’s funny how a lot of random symptoms can happen to someone, and you never get the bright idea to connect any of them. I lived my sophomore and junior year getting these pains every time it rained, or after I drank, or sometimes just because. My mom thought they sounded like migraines so off to the neurologist I went. He gave me some sort of dissolving migraine preventing tablet and lortab. The lortabs seemed to take the edge off, and the tablets seemed to calm them down. I just figured I was someone who occasionally got migraines, no biggie. I slept a crazy amount those two years. Some days I didn’t want to get out of bed. I had also been experiencing a bad break up so I chalked everything up to that. The neck pain continued, sometimes with a migraine, sometimes not. But it was getting worse. I can’t remember the exact order of everything, but I know I moved home and began nursing school. I continued to get these frequent migraines so my neurologist started me on daily pills to try to stop them. Beta-blockers made me depressed. Topamax make me forget everything and feel kind of crazy. There are other medications that I can’t even remember the names of. I decided physical therapy could be the next answer. I hated taking all of these pills and their yucky side effects! Physical therapy did help, but I was still getting these unbearable migraines. And I had other weird, random pains. My hips would ache. Something always seemed to hurt and I felt like I was in a fog at times. Did I need glasses? Was it the stress of nursing school? Was I just crazy?

Next was the herbalist. She gave me a lot of pills and told me to go to a ‘specific chiropractor.’ I had been to one before and always felt a lot worse after. This one was supposed to be different. He said he could help. He said he could fix me. After a few weeks of devoting my time to these herbs and getting my neck cracked, I was feeling worse. No more chiropractors. I do think the herbs helped my immune system. But nothing was taking the pain away.

Back to the neurologist and physical therapy. Then to an osteopath. He thought something was wrong with my joints or something in my neck and I needed something called prolotherapy. Basically, big scary needles into my neck to help scar tissue develop.  But I had started losing hope. He also felt I needed hormone therapy. I was 23- how could I possibly need hormones?? (looking back, Lyme does screw with  many of our hormones!)

Before I decided to get the big needles in my neck, my boyfriend took me to see his father, a TMJ specialist. Along with this neck pain, I had jaw and shoulder pain. My jaw always cracked, no big deal right? Well maybe this is why everything hurt! If the jaw is off, the neck gets thrown off, then the shoulder is messed up, then the hip. Is this my answer? After months of treatment and braces, I still hurt. I was getting worse. Wtf? Ok on to a new doctor. This doctor really listened to me as I described the neck and shoulder and jaw pain, the hip and random areas of my body aching. She wrote everything down. She said she had a similar story and it all came down to one thing- Lyme disease. I had over 12 little vials of blood drawn. The results came back- positive? She said they were positive, but also said a lot of other doctors would say they weren’t. Okay, how the heck am I supposed to take that?? Do I or don’t I? Then came my own personal research phase. I think I do have it! Or do I? It seems the second I become comfortable with this diagnosis, something comes into the mix and I question it. Why isn’t there more definitive research? There really seems to be a big gaping whole in the medical world regarding Lymes disease. The whole thing drives me crazy. Now I am on effexor and neurontin and attempting to ‘boost’ my immune system before I start hard-core antibiotics. I still get the migraines, but now I have a new kind of head ache. I literally feel like my head is being squeezed and my sinuses and shoulders and well, basically whole head just hurts! Makes me incredibly nauseous. All of it just makes me want to give up. And then I feel guilty for saying it because I know how much worse it can be. I could have cancer, or MS, or some other scary problem. Someone could have died.

If it is lyme, why the heck did someone not discover it sooner? If it isn’t lyme, then what the hell is wrong with me? It’s scary, frustrating, annoying. I hate feeling like so exhausted all of the time and not wanting to do anything. I know it’s frustrating for my friends and boyfriend as well. Heck, most of the time I wouldn’t want to hang out with me, so why would anyone else? I am a brand new nurse and I had to quit my job. Night shift was ruining me. I would come home hurting in every part of my body. I was almost getting used to the pain. How am I supposed to work now? Do I need a second opinion? I hate all of this. Yuck.