Christmas blessing

Over the last three weeks, I have met with all three of my specialists. It is almost overwhelming what we have learned. I have been blessed to have three of the top specialists in the state working as a team. They have put their pride aside and are truly working for the benefit of the patient. This reminds me of the Mayo clinic.

Two months ago, I was back in the hospital after four straight days of convulsions. Normally, rest and rehydration will do the trick, but not this time. In two short weeks, I went from an occasional tremor to full bodied convulsions. With HE, my immune system is attacking the neurons in the brain. This creates abnormal signals to be sent through the nerves which control every part of my body. This effects muscles and organs alike. This may sound dorky, but imagine a river or spring. The water begins to flow in one certain way, and it is difficult to stop. The longer the pattern exists, the more difficult to redirect. Prior to starting my Cell-Cept (immune-suppressant), inflammation would set in and then signals would have trouble being sent at all, similar to a stroke. I have been blessed that I have not had an episode such as that since August of '09. While in the hospital, my new neurologist explained that he had treated 22 cases while working at the Mayo clinic, and 20 cases were progressive. He explained that returning to steroid treatment would be too dangerous for me as I had such a bad experience. We agreed that since there is not a cure for this disease, that we would treat the symptoms and work towards living a normal life.

I began taking clonazepam. This is useful in treating some seizures. It is in the class of bezodiazpines, which slow the abnormal electrical activity in the brain. We began with a very mild dose and I showed an amazing improvement. After a month, my body had adjusted to the dose and I began to have some seizure activity again. We doubled the dose, but that slowed the activity to the point I was stoned or asleep most of the time. The last two weeks were a blur. We will take a half step back, allow my body to adjust, and then return to this dose after the holidays.

While I have not made it to full remission since the initial diagnoses (symptom free without medication), I am in partial remission. The only symptoms I currently have are from the medication. Here is the funny part, the side effects are dizziness, fatigue, unsteadiness, poor coordination, muscle and joint pain, and difficulty thinking and remembering...all of which are also symptoms of my illness. Ironic. But my doctor was so impressed with how well I am doing, he is encouraging me to restart exercising and does not want to see me until April. Out of my three specialists, I have never been allowed to go more than two months between appointments, so this is a small victory.

Here is where I need your prayers: We need for my health to maintain so that our medical bills decrease long enough for my husband to get his ankle replacement, and for me to be healthy enough to care for him. I also need prayers for my children. Both are struggling with my mortality, but little Logan is having a much harder time. He is receiving counseling at the school and his teachers are trying to help, but his grades are suffering due to his inability to concentrate. We have shielded them from so many of the details, but we couldn't hide the convulsions when they continued for so long. "When I am at school, all I think about is you being sick and wanting to be with you," he finally told be. He has tried to be strong for everyone and ended up letting himself fall to pieces...much like his mom.

I pray that all of you reading this will have an amazing Christmas and will be able to spend it with the ones you love. For those reading this blog who have been diagnosed or know someone who has, I would love to talk with you personally. You should be able to access my email from my profile if you register with blogger. If you have trouble, let me know.

P.S. Yes I realize that I used the wrong vein in my last post! haha Maybe it is because I just had labwork done, but my vanity has been kept in check by my mistake.

Honesty...

I am publishing some photos now only because I am finally on the other side. Most of you know that when I was initially diagnosed with HE, they used high dose steroids to stop the convulsions, then I remained on high dose steroids, prednisone to be exact, as a form of treatment. When most people are exposed to that high level for a prolonged period of time, the body begins to change. My face rounded out (moon face as it was referred), my pancreas shut down (creating diabetes), my body was confused and thought I was starving so it began to store every calorie consumed. It also increased my appetite (this made me gain 30 pounds in 4 months.) I am only 5 feet tall, so this made me square. It would have been more if I wasn't on a liquid diet for part of the time and exercising every chance I could. I even developed a lump on the back of my neck that was referred to as a Buffalo hump! Seriously! Of course there were other problems such as bleaching of the bones, bone and muscle aches, insomnia, not to mention that it made me certifiably crazy!!!!

After a trip to the Mayo and some experimentation by my doctors, I was able to come completely off the steroids. Eighteen months later, I am finally at the weight I should be. I have to admit that the weight was the worst part. Please do not think of me as vein, but I realized how much of my identity was wrapped up in the way that I looked. I grew up in a family where every member struggled with their weight and were constantly dieting. I was a competitive gymnast and struggled to consume enough calories. I had to eat like a hobbit while the rest of my family tried one diet after another. We celebrated and mourned with food.

As a teenager, when I felt my life was spinning out of control, I learned that food and my weight were the only things that I had control over. Years later, God showed his amazing sense of humor. As though becoming the largest pregnant human on the planet every time I conceived was not enough (Oh, yes...strangers would walk up and tell me that!), but when I was at my weakest and in my greatest time of need, I lost my one coping mechanism. People definitely treated me differently. Those that know me didn't understand if they should point it out or ignore the difference. It even felt as though strangers treated me differently. The change was so fast that I didn't recognize the girl in the mirror and I certainly didn't feel like myself. I felt that I had lost me. That left me with turning to the Lord. Sure, that should have been my first choice, but I am known for doing things the hard way. In fact, I became angry with God first and rebelled. Thankfully, he is a faithful and patient God.

I often get spiritual amnesia though and forget that I need God when my life is peaceful, so he keeps sending me reminders of that time. You see, my condition is progressive and we are constantly having to adjust my medication to deal with new or stronger symptoms. My energy level ebbs and flows. When people in my community see me out, it is because I am having a good day. I appear brighter and the weight is gone, so I am frequently asked if I am better now. "You look better," they remind me while answering their own question. I smile and tell them that I am doing well that day. But I can almost hear God chuckle as I walk away, because we both know that I would not be here or have good days if it were not for his presence.

(in order: October '09, Hurst Wedding '09 (Fall), Easter '10(Spring), Beyer Wedding '10 (Summer), September '10.

God hears our cries

Two days ago, I was sitting in a coffee shop with my pastor and a dear friend. We were taking time to pray and talk about the news that I had cancer and about the procedure I was to have done the following day. My friend Brooke asked me what the ideal outcome would be for me. The three of us had been speaking about the importance of praying specifically. I explained that I was prepared for any treatment, as long as I could come out better on the other side.

If you know my friend Brooke, you are not surprised that she was not happy with that answer. She wanted more. "I don't like that outcome because then we have to be satisfied with cancer," she said. So we prayed for complete healing.

This felt like an awkward request for the Lord because I had already been told that the results of my biopsies showed at least stage 1 cancer. I was going in the next morning for cryosurgery and to talk to with the doctor about our plans. You see, I have always been afraid to ask too much from God because I was afraid I would be let down. This self preservation method is something with which I have become quite good.

John and I arrived at the doctor nearly two hours early for our meeting before the procedure. We waited and they never called us back. The nurse said that he did not need to meet with us. When we got back into the exam room, the doctor pulled up my results and told me that there were fairly developed cells, but not yet carcinoma. The nurse had made a mistake. We still needed to be aggressive, though with my immune deficiency and medication. We are optimistic that we destroyed all of the cells. We will check in six months to see if they have grown back. If I can make it a year without the cells growing back, then we can relax a little.

Another bit of good news...in a weird Kim Dean kinda way. During the procedure, I had a vasovagal reaction. Basically, from the pain or trauma, my body quit sending enough blood to my brain. Laying down usually resolves this and did this time as well. But I have experienced this after every surgery. Doctors always excused the dangerously low blood pressure on pain medication or my anemia. But this occurred again when I was first admitted to the hospital with convulsions. The vasovagal response is a result of a glitch in my neurological system. This is basically the same reason for the convulsions and palpitations. It is a result in the nervous system being over reactive, and sometimes not reactive enough. We learn something new everyday!

Do you believe that I am able...

I am not sure how to start this one, and know that there are many people I should have told first, but as a journalist, writing has always brought me comfort. I received news this morning that has brought me to my knees. In my prayers today, I kept coming to a verse in Matthew 9:27. Jesus had been healing people and performing miracles all day, but a group of men approached and asked for healing. Jesus turned to them and asked, "Do you believe I am able to do this?" "Yes, Lord!" they replied.

Last Thursday, I had biopsies to learn if the immuno-suppressive therapy I have been taking has given me cancer. My doctor told me that he felt it was just "pre-cancer," but he began to weep. He and I have been through a lot over the years. He delivered both of my sister's babies, brought my angels into this world, and held my hand when we decided at 27 years old that I needed a hysterectomy. He is the only man who hasn't quaked with fear under the assault of my terrified mother's threats. On Thursday, he hugged me and kissed my cheek. He began to walk out the door, but turned around for another hug. "You have always been a little extra special for me," he said with a parental tone. I laughed it off and told him it is because I know his secrets. "You have the gift of blessings," he said. I told him that I agreed because I know how blessed I am and have been in my life. "No, you don't understand," he said. "You have the ability to make people feel blessed, even when you are the one in pain." We both shed a tear and he walked out the door.

That afternoon, I lay in bed, physically and emotionally drained. I received a series of phone calls from my daughter to inform me that her school bus had been in an accident with a plumbing truck and I needed to come get her. I am so blessed that all of the children were okay, that the driver of the truck is okay, and that we have such amazing leaders in her school. A counselor from the school who is a family friend was on the bus within minutes to talk to the children. Her smile gave me such peace.

It was a long and emotional week for me, because I knew in my soul how it would end. I got the news this morning that the biopsies came back as cancer. I will have surgery Tuesday to remove what they see and then test to see if it has spread.

We are keeping this news quiet from our children for now until we have a better understanding, so I ask that you be intentional if you share this news. My husband and I will both celebrate our birthdays in a couple of weeks, and I will continue to count my blessings.

I promised my little boy that I will keep fighting to be healthy, and that is a promise I will keep. I have faith that the Lord will deliver me from my pain in this world or the next. Matt. 9:29 "...According to your faith will it be done to you." And with one touch they were healed.

In need of guidance

Okay prayer warriors, I have a favor to ask of you. This time it is not for an urgent situation, rather a request for prayerful advice. I have another tough decision to make.

Let me catch you up on the latest situation. After a month of decline in my health status, my endocrinologist sent my convulsing booty back to the hospital. As usual, there were a laundry list of situations and conversations that I found completely hysterical, but probably would not be appropriate to share with all of my church friends. Come on, y'all know me...I can find humor in just about every situation...and often share my thoughts out loud...when they probably should be filtered. I blame it on the pills and the scrambled brains. Admit it, you wish you had an excuse!

My new Neurologist paid me a visit there, ran lots of tests, put me on new meds, and sent me home. I have to tell you, I feel better than I have in almost two years. From the time I met Dr. Restrepo, he has been a skeptic about my rare diagnoses and was strongly against the usual treatment for the Encephalopathy.

We had a follow up visit yesterday and he was amazed at how well I was doing. In fact, he took one look at me and in his saucy accent asked, "What happened to you? You look amazing!" That is when my husband answered him, "Good drugs!" The very serious doctor spun around and shook his hand at John. "No...no! I am Colombian! We say medication," he corrected. Oh yeah, Doc has a sense of humor! Game on! "That's right...all drugs are good to Colombians," I added. He couldn't help but appreciate my sense of humor. What can I say? I'm FUNNY!

After running the tests and reviewing my file, Dr. Restrepo has conceded to accept Hashimoto's Encephalopathy as my diagnosis. "I'm okay if you want to label it something else," I told him. Again he waived his hand and said, "There's nothing else." He studied about 22 cases of this while he trained at the Mayo Clinic and 20 of the cases were highly progressive. The treatment was always high dose steroids. He said there is not a safe therapeutic dose for me with my history. If it is going to be progressive no matter what, then why expose me to ulcers, infections, diabetes, osteoporosis, bone replacement therapy, and more. We can slow the progression with the immune suppressants and take anti convulsants, thyroid hormone, and B-12 to treat the symptoms. This is a small victory for me! Whoo-hoo!

We had originally planned on switching me to a milder medication at the follow up visit, but now have decided to leave me be. "You are doing too well and I do not want to mess this up by switching anything," I was told. I asked about biopsies that I was suppose to have last week after a test showed abnormal cells. Dr. Restrepo advised me to postpone the procedure since I am highly susceptible to infection and stress or trauma could aggravate my now stable condition. I was soooo okay with this, as the biopsies are done in the office without anesthesia.

Okay warriors, this is where I need some prayerful input...not just medical. When I called my OB's office today to tell her that I would not be rescheduling the biopsy, she put me on hold while she reviewed my test results. She returned to the phone and told me that she strongly advises that I have the biopsies done on an ASAP basis. The type cells found are very concerning, and since the results were misplaced for almost 5 months, she does not feel I should wait any longer. My OB is suppose to call me with his recommendation about the safest way to do this. I am not emotionally ready to have another surgery, put my family through the stress, or take on anymore financial burden. Please pray with me that my doctors and I will make the best decision, and I covet your advice. God bless sweet friends.

Back in the hospital

If you have been following the last couple of weeks, you know that I have had a decline in my health. The tremors and convulsions were coming more often, and my heart began to flutter strong enough that it took my breath away.

I met a new neurologist last week and he was skeptical of my diagnosis and truly against the common treatment for my illness. I was uncomfortable with the way that he just wanted to take a few weeks to review my charts and previous labs, while I felt a progression occurring. I scheduled a follow-up appointment with my endocrinologist to get her feedback on the matter.

Upon walking into her office, she immediately pointed out that there was a significant decline in my condition from our visit just two weeks prior. She was not comfortable allowing my condition to decrease any further, so she admitted me to Stone Oak Methodist. This has to be the quietest hospital I have ever been.

We performed an EEG, EKG, MRI and many labs. Many of the labs will not be back for a couple of weeks. The other tests showed only minor changes. Our new neurologist came in late Monday night and explained that he had been talking with my endocrinologist, rheumotologist, and other neurologist. While he is still not convinced it is Encephalopathy, he has not been able to find any other disease that matches my symptoms. He has decided to treat me for Encephalopathy, but not follow the typical treatment plan.

"Steroids have bleached your bones, began to destroy the bones in your hip, gave you diabetes, and will eventually re-open your stomach ulcers," said Restrepo in an encouraging manner. "I studied at the Mayo and 20 out of 22 cases I saw were progressive. There is not a therapeutic dose of steroids that would work. You will be on very high levels for the rest of your life. You will probably die from the side effects before the disease."

So we have come up with another plan. Instead of treating what we feel is causing the disease, we are going to use less toxic meds to treat the symptoms. This should stop the convulsions and possibly allow me to return to my usual lifestyle, while they continue to look for a cause and cure. I am not driving for a couple of weeks, but we will change meds in a couple of weeks and see if it is possible. That is when we will learn if the symptoms will return.

I also received a phone call from my OB last Friday to tell me that they found abnormal cells and want to do biopsies. However, at this point, we will wait for me to be more stable and my immune system to be stronger.

Hard day

I will make this as brief as possible. This week has been very hard due to an increase in my symptoms. The headaches and convulsions are pretty regular now. Met with a new Neurologist today. He reviewed my file and isn't comfortable with the Encephalopathy diagnoses. The convulsions got worse when I had to preform physical and memory tests at the same time. This is classic in epileptic convulsions, but he said they are too severe to have not shown up on my MRI or the two EEGs I had done last year. He is ordering an anti-convulsing medication, but this is expected to make some other symptoms worse. When I have two people talking or there is too much background noise, my brain will stop interpreting what is being said. The light is on...but no one is home. This will get worse. Dr. Restrepo is going to review all of my labs from the Endocrinologist and the Rheumatologist from the last year and then decide what he wants to do. I will go back on Oct. 11th

When the Mayo Clinic called me this afternoon to discuss the new symptoms, I was informed that the Doctor who has been following me is no longer there. The head of the Department called me and told me that since I was doing so well when I saw him, he now cannot say one way or the other about my diagnosis. He told me that I need to follow up with Restrepo and let him decide, or come off all of my medication and return to the Mayo Clinic while highly symptomatic. There is no way John and I could afford another trip to the Mayo, and coming off my medication is scary. If it is Encephalopathy, that could result in a coma, stroke, or death. If it is not encephalopathy, we do not know what could happen.