Sunday, August 14, 2011

I am Alive!

Wow, I never expected how much of my life would be taken up in batteling this disease. I just wanted to leave a short message, cause its past my bed time, to let you all know that things are going well. After a year of IV antibiotics and two picc lines, things are looking up. I have been on oral antibiotics for about three months now and I have to say that they are waaaaaay nicer on the body than the IV's. Right now I am dealing with minor health problems that are popping up here and there and I am doing my best to take care of them one by one. I hope now that I can spen a little more time sharing with you what the past year has been like and to continue to keep you updated on what is happening now. Let me close by expressing my gratitude to all my family, friends, and students that have supported me. Every thought, prayer, words of encouragement, etc.,  has given me so much strength and a desire to keep fighting. Its the small things that really matter, so thank you, and God bless you.

Sunday, August 8, 2010

Round Two

So, I am really sorry that I haven't posted for a while. These last couple of weeks has been really hard on me: emotionally, mentally, and most definitely physically.

After visiting a third time with Dr. Jemsek he decided to put me on two IV antibiotics, plus a liquid that has the look and consistency of bright yellow poster During my visit I found out that every round of treatment was going to take a greater toll on my body than the last. The nurse point blank told me that my final three weeks of treatment was going to be heck. This has been a very big worry on my mind because of my orchestra classes starting very soon. When I got home I met with one of my principals, and am now trying to working with the district in getting me an aid for at least the first trimester who would also be the substitute when I was too ill to work. I hope it is something that can be worked out, because it would relieve a lot of stress while I am going through the final rounds of treatment. We shall see.

Like I said about, the past three weeks have been pretty intense. In addition to the antibiotics, I am also trying Lyrica again which I am tolerating a lot better. The doctor is very concerned about the high amount of pain that I am still in because that can really hinder the body's ability to heal. I hope we can figure out a good balance of the medications so I can manage the pain better.

During these treatments the doctor is looking for what is called a Herxheimer reaction (Herx for short). Herx reaction occurs when large quantities of toxins are released into the body as bacteria die during antibiotic treatment. Most common symptoms are: headaches, muscle pain, chills, and fevers. During the last three weeks I have experienced all of these symptoms plus nausea, flushing, and major muscle spasms almost on a daily basis. My spasms have really increased in intensity, frequency, and duration during this round. I just have to keep reminding myself that these are just signs that the bacteria is dying and that it won't last forever. Thankfully things will improve drastically once I am strictly on oral antibiotics in about four months. I am so looking forward to that day.

Sunday, July 11, 2010

Trying to Count Sheep

It has probably been the roughest couple of weeks so far. Getting enough sleep has been my biggest challenge. I've had a tough time falling asleep, mostly because of pain, and then trying to stay asleep. I hope I can find something soon that will help me get through the pain so I can get the rest that I desperately need.

I had a pretty big setback this week. My chest pain returned with a vengeance, and I had to go to the ER to make sure nothing serious was happening. Thankfully everything checked out okay, but I'm still frustrated that the chest pain has come back. All I can do is keep on moving forward and not letting the bumps along the way get me down.

Tomorrow I fly out to D.C. for my third visit with Dr. Jemsek, and to start my second round of antibiotics. I am really hoping he can help me find something that can help me sleep, and manage the pain better. I’ll do a more detailed update when I get back.

Friday, July 2, 2010

Birthday and Anniversary

I would first like to say thanks for all the sweet birthday wishes. It was a very quiet day for me. Had to do IV treatments, but my family and I went to the Golden Corral for dinner. It was nice to get out for a little while.

Yesterday, July 1st, was David's and my anniversary. It has been a year since we first started talking. A lot of you have wondered how we met, and so I thought I would share our story. David Robertson and I met on I was never a big fan of online dating, but after some persuasion from my parents (a huge, I decided to give it a try. About a week after I signed up I received a message from David. It really stood out to me from other messages because it felt a lot more sincere, and he talked about things that were a lot more important to me than physical looks and flattery. I honestly didn't think that anything would come out of it besides finding a wonderful friend, but before I knew it this southern boy had stolen my heart (and it takes a lot more than a thick southern accent to sweep me off my feet). We can't really pinpoint at what point the friendship turned into something more. It just happened, so we decided to set the first day he contact me as our anniversary.

He proposed to me in December, and we were hoping to be married this summer. If it had worked out how we had hoped we would have probably been married this week, but the Lord has other plans for us for right now. We are trying to be patient and doing our best to follow God's will, but we look forward to being able to start our life together. It has been a wonderful year, but there have been some tough times too. We have completely opposite personalities which can bring a wonderful balance to a relationship, but can also cause some clashes. I can honestly say that our trials have helped us grow closer and stronger. I know that we still have a lot of bumps ahead, but I'm comforted to know that I have someone who is willing to stand by my side.

Now why would I post this on a page dedicated to my fight with Lyme? Because he has become my rock in this battle, and I rely on him more than he will ever know.  It has been really hard to not have him here while I go through treatments, and I know that he hates feeling so helpless, but he has been there for me in so many other ways.  He is my knight. His armour may be a little bent and worn, but that only means he has been through his own battles and isn't afraid to fight. He is a wonderful example to me, and has taught me a lot about myself. I am so grateful for the wonderful people that the Lord has placed in my life, like David, to help me during this trying time because I know that I could not do this alone.

Love you honey!

Tuesday, June 29, 2010

Second Week

My second week of treatments didn't go as smoothly as my first. Despite the high amounts of probiotics, the antibiotics have really done a number on my digestive tract causing nausea and other uncomfortable symptoms. Have started popping probiotics like they are candy…lol!

Towards the end of the week I was having some serious symptoms of dehydration, and with my weakened heart that can be very bad. After talking with the nurse at Dr. Jemsek's I found out that I was supposed to be on Lactated Ringers which is made up of all sorts of good stuff like potassium, calcium, and sodium. I should have been taking it on my off days (Tuesday, Thursday, Saturdays, and Sundays) to help with detox and keep me hydrated, but the infusion company never sent them. I got my first batch of bags on Saturday and started my first session with it. That IV bag took seven hours!! I am grateful for to have them, cause they are really going to help, but I'm not liking being attached to an IV pole for that long. Sigh!

Had an emotional and mental break down at the end of the week too. Just everything came crashing down, and I got so frustrated with it all. I started to cry and felt so hopeless. The worry of finances, having to rely on those around me a lot more than I would like, and how much control this treatment and disease has on my life right now. It just all caught up with me. Thankfully my sweetie, David, wouldn't let me hang out my own pity party too long. He reminded me that I was strong and that I will be able to get through it. Only two weeks in and I'm having break! I hope I don't have to many more, but if I do I have a wonderful support group that I can lean on when I am too weak.

I did have a bright spot in my tough week. On Monday I was able to spend some time with David’s parents. They are on some huge cross-country bus tour, and the group stopped in Bear Lake for lunch. I couldn't pass up the chance to meet up with them when they were so close. It was so good to see them again. An hour wasn't long enough, but it was better than nothing. Now I want to see my honey!

Tuesday, June 22, 2010

Week One

Well I have completed my first week of treatment and am now in my second round. I have been put on Merrem which I found, after some research, is a pretty hefty antibiotic that inhibits the bacteria's ability to grow a cell wall. Treatments have gone pretty well. I have had some pretty rough days but I also have had some good days. I can feel that my good days are better than before because my mind is clearer and I have more energy. I was even able to do some gardening which I have missed so much. I am happy to inform everyone that my chest (pleurisy and pericarditis) pains have subsided to almost nothing. I haven't experienced this since Dec. 2008 when I had 9 weeks of antibiotics. I've had some of my other symptoms, however, increase in intensity such as my joint pain, headaches, and convulsions.

I had my worst night last night with convulsions. Usually it only hits my right side, but last night it hit all the muscles in my back. I don't remember everything that happened, but my mom describes that at times I was almost bent in half backwards with spasms. I know there were times that I was having a hard time getting deep breaths, but we were able to get through it. I have restarted my seizure medication and I hope that will help with the spasms.

I'm trying to not get too discouraged with the setbacks. I have to remind myself that this road wasn't going to be easy and that it wasn't going to be short, but that it was going to be worth it because I will get my life back.

Sunday, June 13, 2010

Support Group

Yesterday I went to the Utah Lymes Disease support group at the Altaview Hospital. I have always been leery of support groups. A lot of times support groups can turn into a pity session. Don't get me wrong, I know that some people need that time to be able to vent about their frustrations, but that’s just not me. Thankfully this support group is the opposite, everything that I would hope a support group could be. We spent a lot of time introducing ourselves and our experience with Lymes, and then talked about the first annual awareness picnic. I am excited for that; it will be a lot of fun. I really enjoyed meeting all the wonderful people there. They were so kind, and had so many great ideas to help with the symptoms. I even got to meet the current reigning Mrs. Utah. She has Lymes, and has turned Lymes Awareness as her platform. What a great example and a great spokesperson for those that suffer with this debilitating disease. Overall I am really impressed with the group and look forward to becoming an active member of it.

One piece of disturbing news that I found out at the meeting: Congressman Jim Matheson is trying to push a bill that would eliminate long-term antibiotic treatment. Granted that the main reason is to help eliminate the growth of resistant bacteria, but if this bill is passed all people being treated for Lymes with antibiotics will be in trouble, along with any other disease that requires long term antibiotics. The bill either needs to be stopped or an amendment needs to be added to ensure that certain diseases can still be treated properly.

Had a scary moment last night when I was flushing my PICC line. Before pushing any saline through the line you are suppose to pull back the syringe till you see a little bit of blood in the line. When I tried to pull back I was met with a lot of resistance. I tried multiple times without any success, so I thought I would just push the saline through. Something told me to take a closer look at the extension on my line, and I discovered the entire tube was empty of saline. I almost pushed 14 inches of air into my heart! That would have been fatal. With the help of my mom we unhooked the extension and refilled it with saline and were able to get the line working again. I know that I have angels surrounding me, and I like to think that one of them is my Aunt Jeanne who passed away a couple of year ago. She lived with breast cancer for six years and endured many of the same things that I am enduring right now. She is one of my heros and I feel that I have drawn a lot closer to her through this ordeal.

Well tomorrow I start my treatments, and I am anxious to get started. I feel like another chapter of my life is closing and another one is beginning. I don't know what the near future will being, but I am ready to fight to get my life back.