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 paint...lol. 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.

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.

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 LDSsingles.com. I was never a big fan of online dating, but after some persuasion from my parents (a huge surprise...lol), 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!

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 downs...lol! 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!

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.

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.

PICC Line

 So I went to Logan Regional to have my PICC Line put in. Before I write up about my experience I found some great information that explains what a PICC line is and what it does.

What is a PICC line? A PICC is a long, thin, flexible tube known as a catheter. It is inserted into one of the large veins of the arm near the bend of the elbow. It is then pushed into the vein until the tip sits in a large vein just above the heart. The tube is threaded through the vein until the end is near to your heart. The space in the middle of the tube is called the lumen. Sometimes the tube has two lumens. This allows different treatments to be given at the same time. At the end of the tube outside the body, each lumen has a special cap to which a drip line or syringe can be attached. There is also a clamp to keep the tube closed when it is not in use. The end of the tube comes out just below the bend of your elbow. What is it used for? The PICC line can be used to give you treatments such as chemotherapy and antibiotics. It can also be used to take samples of your blood for testing. You can go home with the PICC in and it can be left in for weeks or months. This makes it possible for you to have your treatment without having to have needles frequently inserted into your veins. This may be particularly helpful if your veins are hard to find or have been hardened by previous chemotherapy treatment. How is the catheter put in? Your PICC will be put in by a specially trained nurse or doctor, in an outpatient department or on the ward. It will be put in using a local anesthetic, so that you do not feel any pain. First, the skin in the area where the PICC will be inserted is numbed, using a special anesthetic cream. When the skin is completely numb a needle will be inserted and then removed as the PICC is threaded through it into the large vein which leads to your heart. This should not take long and is usually painless. The PICC will be held securely in place by a transparent dressing. You will then have a chest x-ray to check that the end of the tube is in the correct position.

So I hope that you find that information helpful. I couldn't have explained it better. So, about my experience today. Last winter I had a midline which is almost the exact same except the line is a lot shorter so I already kind of knew what to expect and I wasn't looking forward to it. While my midline was done in a hospital room by a nurse, my PICC line was done in an operating room with all sorts of imaging equipment and a surgeon. They first use an ultrasound machine to find possible veins. After that they took me into the OR and I had to lay on a really skinny bed. I have never been a fan of walking into an operating room and get to see all the equipment and tools (*shiver*). While they were getting me prepped for the surgery the worst thing happened, I had to go to the bathroom! Ah! All I could hope for was that they were going to be fast with the procedure. Oh by the way, I was going to be awake for the whole thing. Once things were ready I was given a few shots of Lidocaine in the area they would be working, which was the more painful part of the whole thing, and then the doctor started going after a really nice big vein. They had a hard time trying to tap into the vein because it had great survival reflexes: once pricked it would try to hide.

Finally they were able to get the needle in the vein and started threading the wire that would guide the sheath through the vein. They used a type of X-Ray machine to follow the wire. When they got up by my collar bone the vein constricted and they couldn’t go any farther. I felt like someone was trying to slice me open. It hurt so much! Unfortunately they had to pull the line out and decided to take a five minute break. I was able to go to the bathroom, and then round two began. I was given a nitroglycerin tablet to help dilate my veins. More shots of Lidocaine and they tried again. This time we had success and were able to get everything threaded and sewed I so it wouldn’t pull out. After 30 minutes in recovery I was sent home. What should have been a 30 minute procedure took almost 3 hours.

I have two tips so multiple medications can be administered at the same time. The doctor told me I have the super-duper Cadillac model of PICC lines which can handle CT scan dyes and have blood drawn out of it. Sweet! I'll get better pictures of it tomorrow. I had a wonderful team of doctors and nurses that did a great job and were so nice to me, but I am very grateful to have that procedure out of the way. Monday I will start my treatments.

Where did the time go?

Holy cow! Where have the past two months gone? I can't believe that it is June already. I am so grateful that it is finally summer! Now I can starting hitting this bug with full force and put all me energy into getting well. Let me give you a brief update of what has been going on.

Unfortunately I have been still suffering with a lot of pleurisy/pericardist and other pains. I had a new symptom show up around the beginning of May: massive headaches. Very intense, all over pain with sharp jabs just behind the ears. Sometimes the pain has gone into the ear lobes and feels like someone is trying to rip them off. Went into my family doctor and he diagnosed them as migraine headaches. He gave me a shot and some pills to try. Unfortunately the only thing the medication did was make me jittery. I was finally able to get an MRI and thankfully it came back normal.

Right after the MRI I flew out for my second visit with Jemsek. We went through all my lab results and discovered some interesting things. First of all I have a minor mutation that affects my body’s ability to clot blood, and my body also can't detox as well as other people. I talked to him about my headaches, and he prescribed me a medication called Diamox that is use to treat altitude sickness and brain inflammation. That was the craziest drug ever! Every time I would drink a soda it felt like I was licking a nine volt battery, and it caused awful sciatica. On top of some seizure medication that he prescribed me to help with my shaking and convulsions, I was completely out of it. I couldn't work, couldn't drive, it was all I could do to walk from my room to the bathroom. I decided that I would prefer dealing with the pain so I stopped it all. Thankfully the headaches and spasms have calmed down a bit.

I have to mention how wonderful my orchestra students have been through all of this. It has been hard to be away from them so much, but they have done well. They have been extremely supportive and have worked hard. We finished off the year with an awesome concert and I am so proud of all of them! I will miss them over the summer.

So what’s the next step? I will be getting my PICC line in on Thursday and will be starting my antibiotic treatments. I've had a Mid-line put in last year which is similar except the PICC line is longer. Not looking forward to the procedure but I hope they will have an easier time finding a vein this time.

TGIF!!!

I am so glad that the weekend is here! It seems like it has been a very long week. Had a lot to worry about besides my health. We have a concert for our youth symphony on Monday, and a presentation that I give to the district on Tuesday. Needless to say I am looking forward to next weekend...lol!


Been having a lot of problems with the lack of energy. Mostly because of my Thyroid levels. When I was diagnosed with Thyroid cancer Sept. 2008 the most frequent comments I got were, "That’s the best cancer to get," or "If I had to choose which kind of cancer I had to have I would choose that one." Granted it is easily treated but I believe that there are no good kinds of cancers. Even the easiest treated ones leaves scars behind on the survivor, but physically and emotionally. I under went two separate surgeries to remove the thyroid completely, and then went through Iodine Radiation. I had to take a little blue pill (which cost $11,000!!! So grateful for insurance), which made me radioactive. They even had a Geiger counter (measure that amount of radioactivity in the surround environment) and one of the assistance said I was hot. I know he was referring to the readings on the counter, but I couldn't resist. I thanked him for the "complement." You know what is so sad? It is really hard to find people in the medical world that has a sense of humor. No one laughed at that comment or when I said "I'm just radiant!" Sigh! Honestly, I think humor can be one of the best ways to cope with a sickness, but that could just be me and my insane ways of thinking. Anyways...that lovely little blue pill forced me into isolation for almost two weeks because of the radiation that I put off. Everything that I touched would become radioactive for a time. I was tempted to go to the Cancer center at the hospital and give out hugs to the patients. Free radiation treatment! (Another one of my jokes that the medical staff wouldn’t respond to.) The only human contact that I would get were the few brief moments when my mother would bring me my meals.

Still don’t believe me about how hazardous I was? Right after I took the little neon blue pill I had to sit in a lead lined room for about 30 minutes to make sure I wouldn’t throw it up. (Eww, I know, gross!) I was told that the first thing I need to do was suck on cough or lemon drops so it would sit in my saliva glands (guess radiation has a heyday with saliva glands). So I pulled a cough drop out of my pocket and was about to put the wrapper in the garbage can next to me. A nurse comes in and freaks out! She ordered me to put the wrapper in my pocket and take it home. Then she tells me about how a woman a year ago sneezed in a tissue after starting the treatment and threw the tissue in the garbage at the hospital. The tissue was in a contamination unit for SIX MONTHS before it could be discarded. And to think that my body was full of the stuff.

Once I wasn't a hazard to everyone else's health around me I started the long process of balancing out my Thyroid levels. One of the aftereffects of Thyroid cancer is relying on a pill to keep you alive. Back in the olden days people died from Thyroid problems. So, the doctor started me out on Synthroid, a synthetic form of the Thyroid hormone T4 which the body then uses to create T3. Talk about roller coaster, one month my levels were so low it was all I could do to drag myself out of bed, and then the next month they would raise it slightly and my levels would be too high. I would get the worse cases of insomnia and anxiety. The doctors just couldn't get it right.

While helping out with the victims of the mud slide here in Logan this summer I met another worker that had suffered my same fate. She told me about Armour which is a natural from of the Thyroid hormone that comes from Bovines. She had great success, so I looked into it. Honestly, I would rather go a natural way than pump my body full of synthetic stuff. My doctor put me on it and with in one month my levels balanced out. Yeah! I was feeling great, until school started, and then the exhaustion started setting in again. Stress can be a huge inhibitor of the body being able to absorb Thyroid hormone so I decided to up my dosages just a little, and it really helped. After my routine blood work and office visit to the doctor I told him about my higher dosage and he freaked! Told me it was too high, and that I as running the risk of osteoporosis. I lowered the dosage and I am exhausted again. Argh! The doctor is going to try a different approach. He is going to lower my Armour and then add Cytomel (just T3) and see if that will give me the boost that I need. I will be starting that Monday and I hope it works.

Pills...Pills...And more Pills!!!

So sorry for how long it has taken me to get back to this blog. It took me a couple of weeks to recover from surgery and then it took almost that long to get everything caught up in my life. Gallbladder surgery went pretty well. Took me a little longer than normal to recover from it but that’s not surprising. I am looking forward to getting back into the swing of things. I've been able to work for almost a week now, and I am so grateful to be able to see my kids and work again. There is nothing more I dislike than feeling useless.


So, as far as when I go back to Washington D.C., it's pretty up in the air. We would like to wait until I am done with school, but my chest pains are increasing in frequency and intensity. So, it might be a little sooner, just waiting to hear back from the Dr. Not sure how long the treatments will last, mostly likely a year, but I am ready to get it under way. At the moment Dr. Jemsek has me on a bunch of supplements to build up my body and get it ready for the onslaught that it will go through with the medication. I thought I would list what I have to take and what they help with:

Alpha Lipoic Acid: To prevent and treat neuropathy. Helps increase glutathione levels; glutathione is arguable the body's most important antioxidant. Functions as a cofactor in energy production. Used by diabetics to help control blood sugar and improve insulin resistance. May boost the immune system and antibody response. Improves the activity of vitamin C, vitamin E, and coenzyme Q10.

Coenzyme Q10 (CoQ10): Boost the immune system. May reduce the risk for developing certain types of cancers. Promotes a healthy heart and may help lower elevated blood pressure and protect against complications. General energy enhancer. Used to fight age-related memory loss. May inhibit artery-clogging plaque buildup and potentially fatal blood clots; Reduces the heart's workload and is useful for people who suffer from irregular heart beats (arrhythmias). May prevent migraine headaches.

Magnesium Malate: Helps maintain normal muscle and nerve function. Is easy on the bowel and can counter malabsorptive issues. Important for maintaining energy metabolism. Can help regulate blood sugar levels.

Multivitamin: Supports healthy immune function. Helps replenish the body's stores of vitamins when diminished due to chronic illness. Promotes adequate vitamin and mineral intake.

NAcetyl L-Cysteine (NAC): Potent antioxidant because it is converted in the body to glutathione. Used as an antidote for acetaminophen and carbon monoxide poising, as well as to detoxify the body of heavy metals such as mercury, lead, and cadmium. May improve symptoms of memory loss, amyotrophic lateral sclerosis (ALS), and Alzheimer's disease. Supports healthy cholesterol level, lipoprotein (a) levels, and homocysteine levels. Reduces inflammation. May improve symptoms of chronic fatigue syndrome. May prevent alcoholic liver damage. Promotes breakdown of mucous associated with pneumonia, bronchitis, emphysema, and cystic fibrosis.

Omega-3's (Fish Oil): Promotes normal blood pressure and health heart function through reduction of LDL cholesterol ("bad") and triglycerides. Reduces inflammation associated with autoimmune diseases. May prevent muscular soreness after exercise. May improve depression and symptoms of other mental health problems. Immune stimulating properties.

Probiotic: May ease irritable bowel syndrome and symptoms of abdominal bloating, cramping, and diarrhea. Control traveler's diarrhea and diarrhea resulting from antibiotic treatment. Immune-boosting effects of probiotics help to reduce intestinal inflammation.

Saccharomyces Boulardii: A "good yeast" that helps produce lactic acid and some Vitamin B's. It also helps combats the "bad yeasts" that build up in the gut.

For a person that despises taking multiple pills this seems like a ton, but I have surprised myself. I have been fairly consistent in taking the full dosages every day, and I can feel some improvement with memory and energy. Probably need to enjoy it while I can...lol! Who knows what will happen once I get high potency antibiotics pumping through my system.

So that sums it up for right now. I promise that I will be better at posting from now on, and I would like to thanks those that have commented. I will be better at replying. Thanks everyone for your love and support!

Short and Sweet

I just wanted to let you all know that my surgery yesterday went really well. The doctor said that I had a "grumpy" gallbladder...lol! Right at the moment my brain is still non functioning because of pain killers, but the doctor is wanting me to take the rest of the week off. Hopefully tomorrow or the next day I will be able to write in more detail. Thank you everyone for your thoughts and prayers. I am off to go eat some real food, yeah! (Just mash potatoes, but hey, way better than a whole day of chicken broth and Jello-O.)

Flowers that my Sweetie sent me after surgery.                      

How I had to sleep the first day.

The Tale of Two Doctors

Had two doctors appointments today. No surprise there. The first one was with a Gastrology Surgeon (I guess that’s what they are called) to see about having my gallbladder removed. Man, I wish he was a general practitioner cause he was awesome! So was the nurse that took all my vitals. The doctor came in asked a couple of questions, explained the procedure, and asked when I would like to have it scheduled. We talked with the nurse and got it scheduled for tomorrow at 11:30 a.m. As odd as this may sound I'm pretty excited...lol! I hoping to find some kind of relief after the surgery.


My second doctor visit didn't go as well. Went to see our "family" doctor to catch him up with what has been happening the last several weeks and our trip to D.C. We also were in need of a doctor locally who would work with Dr. Jemsek (in what capacity I'm not sure of). When we asked our doctor if he would do it he said no. He would still treat my pain symptoms with the pericarditist, but he didn't want to be connected with the Lymes. He even told us to make sure that we weren't being scammed. Can you believe it!?! I guess I would have figured that he would want to try every possible avenue to help me live a higher quality of life. Although part of me can't blame him. So many doctors around the nation put their licenses on the line when trying to treat chronic lymes patients. Thankfully Bills are being passed in several states that protect LLD's, and I hope someday Utah will do the same, because we have Lymes. Doctors and the Health Department will say that we don't, but we do. Dr. Jemsek figures I've had Lymes since high school if not earlier. And I know several people who have contracted Lymes right here in Utah. Alright, going to get off my soap box...lol! I'm just grateful that the Lord is opening doors for me so I can get the helped I need.

So its off to surgery tomorrow. Its a same day surgery so I will be home tomorrow night. I will try to write tomorrow but if I don't you know why.

No Matter What There is Hope

Happy Easter Everyone! Today has been a strong reminder that no matter what happens there is hope that my body will be made whole and free of pain. Whether it be through the miracles of modern medicine or the miracle of the Resurrection, one day I will be pain free. I am grateful for the knowledge that I have and the blessing that are given through faith in our Savior who provided the way for us for to have our bodies made perfect.
I am also reminded today, that while my pain and trials sometimes seem overwhelming, there are others who suffer more than I. Even those that have the same disease that I do have more extensive health problems. While I suffer a lot of pain and discomfort I am so grateful for the things that I am able to do. I can get out of bed (most days...lol), I can walk, take care of my needs, and most days able to work. There are many that can't even carry out these basic needs without the assistance from others. I feel extremely blessed for what I am able to do.
Easter has been a wonderful experience this year. Spent it with my parents and aunt Jill watching General Conference, being spiritually feed. Each of us had a small Easter basket, and my parents gave me a Christus Statue to put in my room. They felt that it would be a good reminder that my Savior is with me and has already endured the pain that I am going through now. I will treasure it forever.

Going Gluten-Free and General Conference

I slept last night! I've forgotten how it feels to have rest...lol. What is even better is that I didn't need the help of pain killers and muscle relaxants. I think the sleeping aids helped a lot. I woke up feeling a little spacey but it wasn't as bad as I thought it would be. I am hoping that this minimal dose will be sufficient. I am also proud to report that the pain in my chest has continued to decrease. This has been the longest pericardial attack so far, and I am grateful that it is subsiding.

We are starting our Gluten-free diet. I say we because my parents and my Aunt Jill will be joining me. I am so grateful for their support. When I was first told that I would have to go Gluten free I was bummed imagining all of my favorite foods being off limits. While doing some research I came across a book that said the people on a gluten free diet can eat almost anything they want. They just need to prepare it themselves and use "safe" (gluten free) ingredients. The biggest thing is avoiding pre-prepared foods. This seems a little more doable. I've never been a fan of pre-prepared foods like canned soups, boxed pastas, etc. I do have a weakness for fast food though and that will be a tough one to overcome. I am going to do it... I just hope Wendy's doesn't go out of business because of it...lol! If anyone has good gluten free recipes and are willing to share I would be eternally grateful. I am especially looking for recipes for bread dough.

Today was the first two sessions of General Conference. I am grateful for the reminder that through all of my trials and tribulations that there is One with all knowledge and power that is in charge. I know that at the end of this I will be able to look back and see God's hand in my life, and see the blessings that He has given me. He is aware of my struggles and pain, and He will continue to guide me on this journey. I am not alone!
 
I have added some links to this page that deal with Lyme and other relevant sites. I will continue to add more and if anyone has site recommendations please let me know.

Final Resort to Get Some Rest

Well the early to bed early to rise theory didn't worked. Unfortunately my tremors and pericardial pain decided to keep me company last night and hindered my ability to fall asleep. I "woke-up" completely drained and in a lot of pain. There is a silver lining in the fact that the pain has lessened quite a bit through out the day. I hope that this pattern will continue through the weekend so I will be up a raring to go teach on Monday (Thank you methylprednisolone). Tonight I will turn to my last resort: sleeping medication. Dr. Jemsek prescribed me two different types, one to help me fall asleep, and the other to help me stay asleep. I have been a little squeamish wanting to take these medications because past experiences with similar drugs have not been pleasant. One particular experience was for a medication study for a drug to help Fibromyalgia (yes, one of the many things that I have been diagnosed with along the way). The medication was a sleep aid, and the theory was that if patients with Fibromyalgia were to get better sleep they would be in less pain through out the day. A side note: A Gastrologist diagnosed me with Fibromyalgia and simply explained that I was just one of those people who couldn't handle the pains and aches of every day living. Doesn't that just make you feel all warm and fuzzy? I could share you my thoughts about that statement but that would take pages to do. Alright, back to the drug study story. The first night I took the drug I was out cold for an entire day! When I woke up I thought it was Wednesday, but no, it was Thursday. Freaked me out! I dumped the medication down the drain and dropped out of the study. Of course, I was never told the dosage I was given, but it scared me enough to shy away from such prescriptions. Now here I am, turning to one of the last things I would want to take, but I am desperate to have a few hours of decent sleep. I hope you all have a good night. Heck, I hope I have a good night...lol! Sleep well!

Trip to Washington D.C.

Let me write about my day first before I get into the details about my D.C. trip. I did manage to get up this morning and started getting ready to go to work. About half way through I was in so much pain and was so exhausted that I called in my sub. I have the most amazing substitute. It's my dad. I feel so blessed to have him available to take my orchestras for me. Next year he won't be available because he will have his own full-time teaching gig, so I guess I need to get feeling better before that...lol! Anyways, went back to bed and woke up feeling a lot better and was able to teach my last orchestra of the day. This process has been going on for several weeks now, and it is really frustrating. I hate feeling useless, and unable to fulfill my responsibilities. Plus I miss my kids so much. Tonight I am going to go to bed extra early (like around 7) and see if the additional hours of sleep will give me the energy I need to teach the whole day. Wish me luck!


So my trip to Washington D.C.:

Mom and I flew out on Friday and figured that we could turn it into a mini vacation by going to see some of the sights. That fight and the flight home were some of the hardest that I have ever experienced. I was so ill. Thank goodness for in-flight movies and tv. We did manage to see the the Rocks/Mineral display at the Natural History Museum and the Holocaust Memorial Museum. Unfortunately I was having a lot of Vertigo and dizzy spells that we couldn't spend as much time as we had wanted. Hopefully I will have more strength for the next trip so we can enjoy the sites. But that wasn't the reason for our visit. On Monday, March 29th, I went to meet with Dr. Jemsek. I was so anxious, worried that I would run into another dead end like I had in the past.

Let me say that appointment was a totally different experience for me. We went through my medical history in great detail, and not once did he make me feel like I was crazy with the questions that he asked when he wanted something clarified. He then did a physical exam and asked more questions. In the end he looked me in the eyes and said "Based on all the blood tests, medical history and exams you definitely have Lyme's and that you've had this for a very long time." I felt like a huge burden had been lifted off of me. I was so close to tears. Finally, someone who was willing to listen! We spent the final minutes of the appointment laying out a treatment plan. First of all he wants me to have my gallbladder out. After going through several results from past scans and tests of my gallbladder, he was shocked that it hadn't already been removed. So planning on doing that in the next couple of weeks...fun, fun, fun! He is also putting me on a Gluten-free diet to remove the inflammation in my body, and having me take several supplements to build up my immune system in preparation for the IV treatments that I will start in about nine weeks. He also order an extensive blood work up to see where all my levels were at. The tech had to draw out 22 vials worth of blood for 32 different tests. It is such a blessing to finally have some answers and a direction to pursue. I am very optimistic that I will now be able to overcome this obstacle.

Prologue

I'm not going to bore you with my medical history because it would take up several pages and I'm afraid that some of you might come to the same conclusions that many doctors have come to: That I'm crazy, I'm making it up for attention, or it's all in my head. Suffice it to say that my health started to deteriorate in high school, and over the past 15 year I have visited 26 different doctors (this does not include the many ER doctors I decided to pay a visit to), gone through innumerable test/scans, and found more questions than answers. In July of 2007 I had my first positive Lyme's test. Ironically, I was happy! Finally I had a diagnosis that made sense, and I felt like I finally found the path that would lead me to healing my body. Boy was I wrong! The more I researched Lyme's disease the more discouraged I became. Not only did I have a disease that was so complex that it could take years to treat but there were very few doctors that even acknowledged its existence as a chronic illness. I arrived at a point that I didn't even want to think about it anymore and tried to push it aside. I simply accepted my lot and figured I would have to live a life filled with pain. As a Valentine's present my parents were able get me an appointment with one of the top LLDs (Lyme Literate Doctor) in the nation Dr. Joseph Jemsek. I flew to Washington and met with Dr. Jemsek on March 29, 2010. For the first time in along time I met with a doctor that gave me hope. Hope for more energy, hope for a better memory, hope for better/more sleep, hope for a future with out pain. I will give more details in another blog about my visit. I have rallied the troops and I am ready to fight!