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.