new adventure

Two years ago this month, I was diagnosed with Hashimoto's Encephalopathy, however, May was the 3 year anniversary from when I first noticed that I was sick.  Those who were along for the ride two years ago know that I was admitted to the hospital with convulsions, trouble with my speech, memory problems and some mild paralysis.  The fact that I was already on thyroid medication probably is why I did not go into a coma like many advanced patients do.  We also began high dose steroids by IV within hours.  I was blessed to have received the care that I did when I did.  After a few months though, we knew that the steroids were making me very sick, but my every time we tried to come off of them, I would relapse and my condition would become worse.  I would develop more symptoms. 

After a trip to the Mayo clinic and another relapse, I began seeing a Rheumatologist/Immunologist who started me on Cell-Cept.  This drug that is used as anti-rejection medication has similar immune suppressing powers as chemotherapy.  I was placed on the highest dose possible and told that if I made it two years, than we might start discussing whether coming off this medication would be possible.  After another hospitalization and being told that my case is progressive, no one knew if we would see the two year mark, and if I did, whether we would be able to even consider removing the Cell-Cept.

If you read the last blog I posted, then you know that I will be looking at a pacemaker in the near future and another surgery around my birthday to remove abnormal cells caused by the Cell-Cept.  While my health situation is not getting better, I was able to return to work after being "retired" for a year.  I met with my Rheumatologist today and I was completely shocked by the visit.  We discussed all of the health problems that have shown up since I was there last.  We agreed to meet again in September.  He asked me, "Do you know what September will mean for you?"  I knew that September was the month I first saw him.  He said, "In September, you will have been on Cell-Cept for two years."  I had not realized that.  "Do you think the medicine is still helping you significantly?" he asked.  I fumbled for words.  "Well, I know it is the only way I was able to come off of the steroids," I answered.  "Yes, but do you think that it is continuing to help you?" he asked.  I have had relapses while on the medication without significant side effects, but we are pretty sure that it is not slowing the progression of my illness.  So...drum roll please...we are going to try and taper down the Cell-Cept to just a fourth of what I am taking now!  This will come with risks.  If I relapse on a lower dose, I will run the risk of speeding the progression or being left with lasting side effects, but if it goes well, then I should have much more energy, have lower risk of infection, lower risk for cancer, and over all feel better!

 I have been determined that if my illness defined me, it would be because of my strength and the new ability to appreciate what and who I have in my life.  The doctor told me how impressed he is with how I have handled all that has been thrown at me.  I assured him that I do not have a choice.  No one asked me if I wanted to be sick.  I also have two amazing children that need me to be strong.  "Oh Kim, that is not true," he said.  "I have patients with far less debilitating illnesses that crawl in a fetal position and feel sorry for themselves," he explained.  I told him that I have had my fair share of pity parties, but two years has made a great deal of difference.  He laughed.  As he walked out the door, he smiled and said, "I have had two shoulder surgeries this year and I am not where I want to be, but I look at you and strive to be as strong."  Luckily he had closed the door before I started to cry.  Wow...we have come a long way friends!
  

Take up your cross daily!

 Most of you know that when I was diagnosed with Hashimoto's Encephalopathy, two years ago, I thought the time of suffering without any answers had come to an end.  However, being diagnosed with a rare auto-immune neurological disease meant that there were a few opinions about my illness, but very little knowledge.  The Mayo Clinic was clear about the fact that there would not be a cure, but that there were a few treatments available, and my body would decide if any of them were going to be right.  Two years, 10 specialists, and 22 medications later, we know that my condition is progressive, and is effecting almost every organ in my body.  A month ago, my kidneys were added to the list.  I have outlived the studies done on progressive cases, so I am treading in uncharted waters...and by the way, I don't swim!  I do doggy paddle and float on a sun raft with grace.

My point is that in the beginning, I was brave.  Truth is that it was probably a combination of being stubborn and in denial.  If it were a burning building, I probably would not choose to run inside.  I did have peace though.  I had faith that I would be saved.  We tried many different medications and they would give hope and short term relief, but none of them were magical.  I began to accept that the doctors were not going to save me.  I remember attending a funeral for one of the most amazing women I have ever met.  She had battled cancer multiple times while raising her two children, teaching at a school, and playing the piano and organ at church on Sundays.  Cynthia's children sat on the front pew, while people stood...one by one, to share how she had touched their lives by sharing her heart or showing compassion.  I was a new mom then and instantly knew that when my time came, I wanted to have lived a life that would make people want to stand and tell my children how I had made a difference.  But in reality, nearly a year into my illness, an anger grew. 

I was angry that I might not see my children grow and get married.  I was angry that my life had already seen so much pain and grief, and I wasn't getting the break I thought I deserved.  I was angry that people in my life continued with theirs.  I was angry that some who stood by me in the beginning grew weary and disappeared.  I wasn't living the life of a woman giving a testimony of how great my God is.    We are never promised that following God will lead to an easy or fair life.  In fact, Jesus says in Luke 9:23  "If people want to follow me, they must give up the things they want.  They must be willing to give up their lives and pick up their cross daily."   Over the last two weeks, I have learned that my heart isn't working correctly and that I will need a pacemaker and medication.  Last Tuesday, I received news that my six month cancer screening showed regrowth.  But I am not going to live my life in fear.  We have decided to stick solely with medication for my heart for as long as I can.  And since the re-growth of cells is due to the medication I am taking, and will take for the rest of my life, we have decided to wait six months and re-evaluate my status, rather than having another surgery.  I also returned to work part time on Tuesday after being home for the last year per my doctor's instructions.  Life is not a piece of cake, but I will pick up my cross daily and take one step at a time, trying to be an example the best way I know how.

 I have made plenty of mistakes and made wrong choices, but ultimately learned that my illness gave me a gift.  Several in fact.  This may sound weird, but my illness has been much like many friends I have had in the past. Sure, it has caused me pain.  It seems to come and go from my life in ways and at times that are hard.   But it has also caused me to grow in my faith.  It has brought people into my life that give unending love and support.  It has introduced me to people across the world that are walking the same path.  It has given me the opportunity to grow my patience. It has forced me to realize that God is the only true constant in my life.  And it has given me the chance to teach my children how to face adversity knowing that the Lord is on our side.  If you can imagine this disease as a bazaar relationship with me for a minute, then you can see how my favorite song from the musical Wicked says it best:
                     I've heard it said, that people come into our lives for a reason
                     bringing something we must learn.
                     And we are led, to those who help us most to grow
                     if we let them, and we help them in return.
                     Well, I don't know if I believe that's true,
                     but I know I am who I am today because I knew you.

                    It well may be, that we will never meet again, in this life time
                    so let me say before we part
                    So much of me is made of what I learned from you
                    You'll be with me, like a hand print on my heart.
                    And now whatever way our stories end
                    I know you have re-written mine by being my friend.

                    Like a comet pulled from orbit as it passes the sun,
                    like a stream that meets a boulder halfway through the woods,
                    who can say if I've been changed for the better,
                    but because I knew you, I have been changed for good!                        

heart broken...

I expect a crazy week at our house, but after all...it is May!  Logan has 3 baseball games in 5 days and we are throwing karate into the mix.  John, my husband, will be in Houston all week for a certification program on solar energy, (yes, he is a nerd!)  And I have two important doctors' appointments to attend.

This morning, I met with my cardiologist who gave me some results from tests that I had run last week.  They showed that I have supraventricular arrhythmias occuring.  In very basic terminology, my heart has an electrical problem in the upper chambers of my heart.  Sometimes, it beats too fast.  Sometimes, it beats too slow, and the timing between beats is often irregular.  As I have Hashimoto's Encephalopathy, an auto-immune disease where antibodies made by my immune system are attacking neurons in the brain, creating erratic neurological impulses...it is fair to believe the two are related, but no one will commit to that just yet.  No matter what, we will treat it the same way regardless.  The blessing is that we are going to try to treat this.  I feared that they would say my disease created too many obstacles to treat aggressively.

It appears that we will treat this with a combination of a high-tech pacemaker and medications.  The fact that my heart changes speeds so often, they expect that the battery will need to be replaced every six years, rather than the 10 that many people are able to wait.  The fact that I am on immune suppressants has perks and complications.  This medication is used as an anti-rejection medication, but it increases my risk of infection.  They found mitral valve prolapse as well, but this only increases my chance for a bacterial infection in the heart.  They are not too concerned over this.  Initially, we will start medication and monitor its effects for two weeks.  If I have luck with it, we will wait as long as possible for the pacemaker.  If the medication slows the heart too much, then we will walk into the process of getting the pacemaker.  We are waiting on the results of one more test.  The computers  crashed while I was in the office.  Nice to know I am not the only one with technical issues!  If it shows that my heart is going into a block (getting confused and pausing for at least 3 seconds), then we will do the pacemaker immediately.  Driving will be a game time decision.  As my disease and status changes from minute to minute, the doctor wants me to be the one making the call.  He knows how life changing it would be for me to stop driving all together, so it will depend on how I am feeling and how I react to the medication. 

Lastly, if my prayer warriors would join me in praying about my appointment tomorrow.  As many of you know, the immune suppressant I take makes me 900x more likely to develop about 6 different kinds of cancers.  Those are not good statistics for long term use.  We found abnormal cells six months ago and had them removed.  I go in tomorrow for screening to see if they missed cells or if they have grown back.  It will take a couple of weeks for those results, but just going in for the screening has me a little worked up.

Thank you friends!  I also want to share that I have had other patients with HE read my blog, as well as physicians and they have contacted me.  God has created a network of patients for a really rare disease and I have been blessed to walk some of them through my journey.  I love it!     

Let's play a game...

As you may have read in the previous entry, I had a mix up with my medication a couple of weeks ago, which forced me off my Clonazepam for almost three days.  By the end of the three days, I had a migraine and began to have twitches.  These led to mild convulsions; not the strong ones that I have had in the past.  I restarted my medication, but I was not bouncing back. 

During my last hospital stay, I was in full convulsions and then proscribed the Clonazepam.  Worth noting, they did sedate me for the evening while they ran tests, so the rest probably helped.  But, I noticed an immediate improvement upon starting the Clonazepam.  My doctor was amazed at my quick progress.  This is why I had concerns about not improving significantly when I restarted the medication.  My fatigue was still high.  I was having twitching during the day, and the convulsions would restart in the evening when I was tired.  I could not shake the migraines. 

I visited the Neurologist last Thursday and he reminded me that my condition is progressive and that my body would build up a tolerance for the medications.  This is something that I am very aware of, but I had been feeling so well, I was living in full faith that I was better.  He also explained that part of my symptoms could have been withdrawls, but those should have resolved by the appointment.  We discussed my diagnosis of Diabetes Insipidus, which basically means that my brain was sending wrong messages to my kidneys and they were over producing.  He didn't seem too surprised or concerned.  I got the same response when we discussed my memory problems.  My illness is labeled in the dementia catagory...and my medications list that as a side effect...so again, he wasn't too surprised.  He did increase my dose of Clonazepam and added Gabapentin to assist with pain and help my mind slow enough that I could sleep better.

For the last week, I have been having increasing levels of joint and muscle pain.  Whenever I have a new or returning symptom though, we have to play a game.  We have to determine whether the symptom is from my illness or the medication.  In the end, the Specialists usually ask me, "Well, what do you think?" and I stare like a deer in the headlights.  Then we increase or add a drug.  This time...I think I will let you decide.

Game Objective: determine what is causing the continued headaches, memory trouble, dizziness, fatigue, and muscle/joint pain.

Details: Hashimoto's Encephalopathy is an auto-immune neurological disorder where the immune system attack the neurons in the brain, causing inflammation.  Symptoms include:Confusion, Disorientation, Psychosis, Coma, Tremors, Convulsions, Concentration Problems, Attention Span Problems, Difficulty Retaining Information, Short Term Memory Problems, Seizure Activity, Monoclonal Jerks - Involuntary Muscle Jerks, Dementia, Fatigue, Coordination Difficulties, Headaches, Episodes of Stroke, Episodes of Stroke-Like Deterioration, Right Sided Hemiparesis - Right Sided Partial Paralysis, Aphasia - Speech Difficulties, Articulation Difficulties, Word Finding Difficulties, Fine Motor Movement Problems - Coordination of arms, hands, fingers.

Side effects of Desmopressin:   
•headache •irritability •restlessness •extreme tiredness •confusion •slowed reflexes •muscle weakness, spasms, or cramps •hallucinations (seeing things or hearing voices that do not exist) •seizures •loss of consciousness for a period of time

The disclaimer on my Cell Cept says: If you experience any of the following symptoms, call your doctor immediately: weakness on one side of the body or in the legs; difficulty or inability to control your muscles; confusion or difficulty thinking clearly; unsteadiness; memory loss; difficulty speaking or understanding what others say; or a lack of interest or concern for usual activities or things you usually care about.


Side effects: •difficulty falling asleep or staying asleep •pain, especially in the back, muscles, or joints
•uncontrollable shaking of a part of the body •headache •fast heartbeat •dizziness •fainting •lack of energy


Clonazepam is used alone or in combination with other medications to control certain types of seizures.  It works by decreasing abnormal electrical activity in the brain.

Side Effects: •drowsiness •dizziness •unsteadiness •problems with coordination •difficulty thinking or remembering •muscle or joint pain •frequent urination •blurred vision

So, the winner of the game should head to medical school and become a Specialist so you can tell your patients more than, "Well, what do you think?"  hahaha  

I am not getting down, but sometimes I think the Lord is testing my patience.  That is clearly of "Fruit of the Spirit" he thinks I need to develop.

Behind Enemy Lines

It has been several weeks since I found time to update everyone on the latest health news here at the Dean house.  So much has been happening that it is hard to know where to begin.  That, and my memory is not so good these days!  Heehee

About a month ago, my son came home complaining that his neck was sore and he felt miserable.  Within a couple hours, he had a fever and a horrible headache.  He woke the next morning throwing up.  I was lucky enough to get an early appointment where he tested immediately for Strand B of the flu.  This was a fast hitting and vicious case.  Considering the fact I am on high dose immune suppression therapy, we had reason to be scared.  Many people with auto-immune diseases or suppressed immune systems die from illnesses, such as the flu or pneumonia, rather than their disease.  No matter how you feel about vaccinations, I was informed the next morning by my immunologist that the flu vaccine I received months prior probably saved my life.  I had just come off antibiotics for a sinus infection, and my body had not recovered yet. 

In my previous blog, I mentioned that it appeared my kidney function was off and that I was being put on a new medication.  I am blessed to say that the medicine is working.  It does mean that part of my brain is damaged, but I am focusing on the fact that there is a treatment and my body is responding.  I have also been successful at adding exercise back into my routine, so I have regained some strength and energy.  This is due to the clonazepam that I am taking as an anti-convulsant.  Prior to starting the Clonazepam, I would relapse after only a couple of workouts.  I have been exercising for four months and have been feeling better then I have in nearly two years.

Despite having those victories in hand, I have been struggling lately on another front.  Most of you know that I tackle my disease with prayer and a lot of sarcasm.  Well, increasingly, I am struggling with my memory.  This is partly from the progression of my illness, and partly from the medication that I take.  I forget to turn off the oven, leave water running, forget why I am at the store...etc.  My husband  and I joke about "Mama's brain being a little messed up," but the kids have now joined in on the comments.  For some reason, it stings a little a more.  Watch out parents...everything you say does get repeated.  Then I was sitting at the baseball field with other parents.  One started talking about her crazy mother-in-law and how she forgets to turn off the oven and the parent is afraid to leave her children with grandma.  Turns out, the grandmother was a client of mine when I worked as an outreach coordinator, and now we have the same problems.  I truly feel that the enemy is whispering in my ear because I have been so proud of the progress I have been making.  For those of you who are not Christian, I am sorry if this makes you uncomfortable, but I have witnessed miracles.  I cannot claim them without acknowledging that the enemy exists as well.

The most recent test has been over the last week.  I have been very busy and my body has been tired.  Then I picked up my anti-convulsant medication from the store yesterday.  I had missed a dose the night before because I didn't get to the pharmacy in time.  I ran errands yesterday morning  instead of picking up my prescription.  It was mid-day before I did, therefore, too close to my evening dose, so I missed another.  Last night, I finally got around to taking my medicine.  It was just in time, because I was starting to have symptoms.  The only problem was that the pharmacy gave me the wrong prescription.  Another missed dose.  I finally took it this morning, but I was already starting to convulse.  I had to spend the next three hours in bed while my body calmed down.  This was a reality check for me.  Just as I was claiming how well I had been doing and began to live a normal life, I was reminded that I am sick.  The medication only hides the symptoms, not the truth.  

I recently watched Secretariat with my kids.  The movie starts with a quote out of the book of Job.  After Job has been stripped of his family, wealth, livelihood, and health, he begins to throw a class act, well earned pity party.  God responds to him just as a good Rabbi would, providing answers in the form of a question.

     

                    Do you give the horse his strength or clothe his neck with a flowing mane?

                    Do you make him leap like a locust, striking terror with his proud snorting?

                    He paws fiercely, rejoicing in his strength, and charges into the fray.

                    He laughs at fear, afraid of nothing;

The only problem with this is that it is not in full context.  The Lord is referring to a horse heading into battle, one with his warrior.  I promise that I will continue this battle with the ultimate warrior guiding me, so that his mercy and love can be seen, and we can learn more about this disease for the future.

Gotta laugh!

While sitting at my favorite coffee shop last week, a beautiful woman from church walked up and gave me a compliment about my complexion.  With all the medication that I have been taking, my skin had been having an identity crisis.  It didn't know whether to wrinkle or break out like a teenager.  I was using my daughter's acne cleanser and wrinkle cream!  It is nice to be feeling like my old self and the compliment felt great.  Not only did it make my heart burst, it opened my eyes to yet another way I had made progress.  After being diagnosed with HE, it was hard for many people to quit being so serious.  I found that it made the pills (oh...and there have been many) easier to swallow when I took them with a dose of humor.

Those who remember the night I was first diagnosed might remember my mother, sister, and me laughing the whole night.  There were so many things we found ridiculous.  Well, lets start with the fact that I chose the day that I went into full body convulsions (which lasted a hilarious 12 hours) to wear a mini skirt and 3 inch heals.  Every time the nurse asked me to follow her, I wondered, "Could she do this?"  Heck, I have danced backwards in heals, but never while doing the hippy-hippy shake!  Another nurse asked if I was cold.  Then they told me to drive myself to the hospital!  Really?  And this was my brain doctor!

Then I had an MRI where I was asked to be still, asked to fill out a "check the box" form, and then expected to feed myself rice, peas, and chicken...which came with a knife!  We laughed as I had a food fight with myself and my mother requested a plastic knife.  My pastor walked in expecting to bring peace to the situation and the first thing he said when he saw me was, "Well, that doesn't look good."

Oh, and the Mayo Clinic trip.  While looking at the Air Mall magazine, I learned that they sell stainless steal wallets and portable microwaves...yet I had trouble getting a small jar of raspberry jelly on the plane.  My husband, who shattered his leg four years ago, was pushing me in a wheel chair while wearing his giant brace.  It was camouflage and looked like a prosthetic.  He was asked many times which war he lost his leg in...he eventually started making up stories.  Each one was better than the last, then they would wonder what kind of wife was making him push her all over the Mayo Clinic.  I must have been really bad off!   

 

As time went on, people close to me would have momentary amnesia.  My mother asked me once, "Who is cutting your hair these days?"  Hmmmm...I had a sister that owned a salon, my mother and grandmother went to cosmetology school, yet she thought I walked into a salon and said, "Please give me the hair cut that highlights how my hair is falling out and stringy...maybe a mullet?"  The truth was, my hair was falling out so fast that when I asked my hair dresser to trim it up, she didn't charge me!  Yep...she was done with about three snips!  All in good fun.

Then there were the times people felt the need to point out the fact that I had gained weight.  My steroids made me put on 30lbs in 4 months.  Being that I am only 5ft tall, I went up four sizes.  Several people thought I went through 3 different wardrobes and didn't realize.  Oh, one even said, "It's a shame when that happens to pretty girls!"  Yep, that was an attempt at compassion.

 There were times when it seemed impossible to get out of bed and I threw plenty of pity parties...no really, you can look back through the blogs!  What I have learned though, was that other than God, I played the biggest role in how my life was going to be.  I learned that watching the world go by while I laid in bed was too painful, so no matter how difficult, I try to get out of the house.  When given bad news, I choose to focus on what needs to be done to correct that, and I remember all of the ways I have overcome the past.  My favorite bit of advice was, "Even though you are in pain, you do not get to be one!"  Life gives us plenty of reasons to be sad or angry, so never miss out on a chance to laugh, even if it is at yourself! 

        

Little things...

If you have followed this blog for a little while, you are aware that I have found a new appreciation for the little things in life that we often take for granted.  This point came easily to me after being diagnosed with my illness, but it is something I pray everyone will take the time to notice.

Last Thursday night as I was tucking my 9 year old son into bed, he prayed for two things.  He wanted it to snow that night just like the rumors were forecasting, and he wanted a snow day declared so that the whole family could enjoy it.  "Even if they don't cancel school, can we all just stay here and play in it together?" he begged.  My 9 year old has become too aware of the fact that we may have limited time together, so he grasps at every opportunity for cuddle time or a family movie night.

As I crawled into bed, my prayers were that I would be able to watch my children enjoy something so simple, but new.  We awoke the next morning with the finest dusting of snow and ice and we were able to tell the kids that school was canceled.  The joy on their faces, the giggles in their voices, the squeals as they touched the snow for the first time took my breath away.  What a blessing and a gift for my family.

 I visited with my Endocrinologist Monday and we reviewed some labs that we have been monitoring.  My kidney function has been high for quite some time, and partnered with symptoms that have been occurring for nearly 2 years, we have realized some extent of the damage done to my brain.  Hashimoto's Encephalopathy attacks the neurons of the brain.  I experience inflammation in the brain.  The inflammation initially caused convulsions, migraines, and then stroke like symptoms.  With high dose steroids, most of the damage was reversed.  It appears that prolonged inflammation in part of my brain that controls my kidney function has caused permanent damage.

I am optimistic though.  If my new medication works, it will relieve many of my symptoms and allow me to sleep at night.  This will remove some stress off my body and possibly slow the progression of my disease.  This is my prayer.  Due to some potentially serious side effects, they will start me out slowly with the medicine and monitor my labs closely.  The first night was great, but the second was less impressive.  I am praying this is just because my body is trying to adjust and will settle down.

Thank you all for your support, prayers, and walking this journey with me.