Spirit of a Storm

I started my Mother's Day today with one of my favorite early morning rituals. I made a pot of coffee and took my mug out to water the garden before anyone else woke up. This ritual began when I was hyped on steroids and only sleeping 2-3 hours a night. I left the house so that my stumbling and poor motor skills didn't wake everyone. Come on friends, you remember your younger days when a few late nights ended with you sneaking your drunk butt through the door and to your room. It never failed. You would bump something, but while trying to catch that, would knock over a vase with your butt. I'm not saying I did that! Well, that is how I became while sick.

I needed the quiet moment today. The last few have been rough for me. If you read my last blog, you know that I had a small relapse or flare in my condition, but felt well considering. I saw my doctor last week and she ordered several labs. We were both confident though as I seem to have made great progress. As the week progressed, I felt tired, but nothing that alarmed me. I crawled into bed a few nights with my head hurting, but still wasn't concerned.

I met a friend for coffee Friday morning and celebrated a sweet lady's birthday. By noon, I was getting my hair trimmed. Friends, you know that you have lost a lot of hair when your hair dresser quits charging you because the job is so small! I returned home and had to lay down for a nap. John called me on the house phone and said that my doctor had called him. See, he is listed as my emergency contact. "But today is her day off," I insisted. "Yes, but she gave me her cell phone number and needs you to call her right away," John informed me.

I called her, but she was on the other line. I waited for 20 grueling minutes wondering what she had to say. The phone finally rang and she apologized for having to call John. "Today is your day off Dr. Welch," I informed her as though she wasn't aware. " I know," she expressed sounding out of breath.

"I am on my way back to the hospital to see a patient. I received a frantic call from

my Assistant though because your lab results came in today. Kim, there is something

going on here and I am very concerned."

"That would explain why you are calling me on my day off then," I responded. "Exactly!" she answered. Lets break it down. My TSH (thyroid hormone) fluctuated violently from 1 to 4 and back again over the last year due to my Hashimoto's Thyroiditis. This is a very common disease so that did not surprise anyone. When I was started on the immune suppressants for the Encephalopathy, this volatility stopped. In fact, my TSH was at 0.8 which led us to stop my synthetic thyroid. I know...blah blah blah. Okay, my doctor informed me that my TSH had jumped to 8 in just two months. We do not have any idea why this would happen suddenly. To make things worse. My antibody level jumped over 500 points. This is a good sign that my immune suppressants have quit working. We do not know why. "Is this why I had my latest relapse?" I asked. "That is what I am thinking," she answered.

So where do we go from here? We don't know. We started the thyroid hormone back, but we have not adjusted the immune suppressants. If they do not start working again, than Chemotherapy will be my only option. Unfortunately, there is not a great deal of experience treating my illness, and very little experience using Chemotherapy. We do not have much evidence whether this would even work, but it is the only treatment left.

I have to admit, this was the first time that I have actually been scared. I sat in the floor and sobbed like a baby. I want answers. I want someone to tell me that they know what the heck they are doing. I want someone to tell me I will live to see my kids graduate! I want someone to tell me that I can make plans for 5, 10, 20 years down the road. I am tired of the physicians asking me, " well... what do you think?"

So, my Mother's Day was a mixed bag of emotions. Standing in the garden with my coffee cup in hand, I was listening to my ipod. A familiar song came on and one of the verses struck a cord...haha...(What do you expect? My mother was a choir director and church pianist!) Anyway, these lyrics say it best:

There's a hurricane that's raging through my blood

And I can't find a way to calm the seas

Maybe I'll find someday the waters aren't so rough

But right now they've got the best of me

You talking to me?

Try not to act too surprised when I reveal the current opinion of my doctors. It is the consensus of my many specialists that I might be hard headed. Seriously! It seems that I have been in an ever present state of denial since my initial onset. I am an optimist, and kept thinking that I belonged in tights with a cape. While the image in your head must be precious...it is apparently not accurate. I have been waiting for the grand return of my former self, but she will remain M.I.A. for a little while longer. I was under the impression that I needed to rebuild my stamina by pushing through the fatigue. But the fatigue was apparently by threshold.

I met with my doctor for the first time since my relapse two weeks ago. I have made a great recovery, but with every relapse comes high risk. Preventing another relapse is top priority. We have the choices of switching to chemotherapy, re-starting the steroids, or giving my current medicine the chance to work. We have opted for the third choice. In order for this to work, I am going to have to reduce the stress in my life. Stress and fatigue are the biggest triggers.

There are certain things in life that cannot be prevented. Death and illness of your loved ones is one of them. Being a mother is something that I wouldn't change if my life depended on it. That leaves work. My doctors feel that it will be best if I do not work and concentrate on resting my body and mind so that we can actually achieve full remission. I am waiting on some lab results to see if we need to increase the immune suppressants.

I will keep all of you up to date as things change. Have a very wonderful weekend. There is a big 5K in the Hill Country in the morning that all should attend!

...and we are back!

I know that it has been a long time since I have given an update. There are many reasons...some I even think are quite good! Anyway, there is a lot to say, so here we go:

Many of you know that over the Christmas break, my sweet little girl started having increased trouble with her vision. They put her through many tests. The ultimate decision is that she has severe migraines 24/7. She has had them so long, she only notices the strong ones. These are usually paired with a blood nose and charming disposition!

As most are aware, I started my steroid stage down last fall. Each stage down became more difficult, but by mid January, I was steroid free. I even managed to do this without becoming a vegetable or my brain turning to scrambled eggs! Haha...both food analogies. Gotta admit that is funny!

I was able to return to exercise with the goal of losing the 30lbs the steroids put on me. Good thing too with swimsuit season approaching! Now that is funny. Everyone knows I don't swim! But my butt does have to fit into a yellow ducky inter tube!

Unfortunately, last week was filled with stress and disappointment. I learned that a friend I went to school with who had a progressive neurological disease past away. My duties at work have been increasing for some time now. And then I finished the week off with a girls weekend. I apparently pushed past my threshold. My father suggested I found a bad worm in the tequila. heehee Anyway, this resulted in a relapse Sunday night.

This one is different. I have not had an episode without the steroids, but while on the immune suppressants. I started feeling dizzy and a little nauseous. My body started to hurt all over. The convulsions started that night, but would stop after about 10 or 15 mins of laying down. They would re-start every time I stood up again. My doctors and I agree that I can't go back on the steroids, so they ordered bedrest while we watch the symptoms. The convulsions tapered off after two days, but I am still having the muscle spasms and twitching. My blood pressure dropped for a while, and my blood sugars began to rise. Headaches and dizzy continue.

You will all be glad to know that we have not lost our sense of humor. John was fussing at the kids out of his frustration. When I called him on it, he turned around and shouted, "hey...you just shut-up and shake!" We both looked surprised and started laughing. He brought me dinner in bed the second night and asked me to take a bite. As I sat up, I began to convulse and shake. He smirked and said, "Is that a no, or a maybe? I can't tell!" We have decided that laughing is the only thing we can do right now. That and pray.

I am supposed to stay on bedrest until my doctor's appointment on the 28th. It is looking like they will not let me return to my regular lifestyle though. My rheumatologist said that if this drug didn't work, than we would try the full strength chemo. Just because I have relapsed, I am not ready to say the medicine is not working. I had been doing great. I think if I allow my body to rest, the medicine will continue to work. Pray with me that they see it the same way and that we don't experience any progression. We were told to expect permanent damage the possibility of stroke, coma, or death with each relapse. I am proud to say that I am not drooling, I'm conscious, and I still have a pulse! Thank you, thank you. I will be here all night...after all, I'm on bedrest. Where can I go!

Update from the Mayo Clinic

I started off this morning with a phone call from the Mayo Clinic. They were looking for an update on my condition, as I started yet another stage down on the steroids. Besides the cold I have been fighting, I ran down the list of my symptoms: headaches, tremors, lack of balance, and high blood sugars. Some of these are from the steroid withdrawals, and some are from the scrambled brains...just kidding Stephanie! My sister doesn't appreciate my sense of humor!

I am still having disconnect problems where my brain is not communicating well with my hands, feet, bladder, heart and now esophagus. The Mayo doctor explained it by saying that the episodes I had this past summer were similar to having strokes. While it wasn't full paralysis, the nerves had to find new pathways to communicate with the rest of my body. Since I am younger than most patients, my body compensated well. Unfortunately, it will take a long time for the nerves to remember their original pathways. Some pathways will never be restored, but we are optimistic. I am now at 10mg of steroid. I have only been on a full dose of the anti-rejection meds for two months. It may be another month before they have built up fully in my system. This has the Mayo Clinic impressed. They did not think that I would be able to reduce the steroids so quickly.

They provided me with a game plan for the next few months. It is important for me to get off the steroids as soon as possible since I have now developed a lump on my neck and my blood sugars are fighting the withdrawal. They are worried my body is becoming too dependant on the insulin. They told me what to do if I have another relapse, and have asked me to consider returning to Minnesota for additional testing, but there is not a rush.

Their final instructions were to have a great New Year and not to blow anything up, seeing how my crackhands and fireworks are not a good team! Haha...just kidding! I hope you all have a great holiday! Be safe!

Update from the Dean Household

The kids are out of school for the next two weeks! They are very excited. We have had a lot of excitement this year...so I am most excited about having next week off! I could use a little peace and quite.

I started the stage down to 15 mg of prednisone last week. We once thought this would be my maintenance dose, but I am a bit of an over achiever! I am not shaking, rattling, or rolling...therefore...the music plays on! I will start another stage down to 10 mg next Monday.

With each stage down, my body has resisted a little more. We may end up raising the immune suppressants, but for now, we will leave it alone. My energy takes a big hit, my blood sugars actually raise, I get migraines, my motor skills suffer and then I usually get very sick to my stomach. Let's just say, everything gets angry! It is worth it though to know that I am making progress. My dream is to be off the steroids completely and find out that the insulin can go away also.

As you may have read in my last blog, Bradie has been having trouble with her vision. She had an MRI, but it did not reveal anything. They scheduled her with a pediatric neurologist for Feb. 22nd. There is a shortage of pediatric specialists in our area, so it takes that long to get an appt. One of her teachers told me last week that she had noticed Bradie struggling and was wondering what was going on with her. It was nice to hear that the teacher was paying attention.

When we registered the kids for school, the counselor sent home a list of support groups that they would be offering. I accidentally signed my kids up for grief counseling. I planned to have them removed from the group, but the counselor said Bradie has been talking about my illness and really opening up to the group. There are kids who have parents fighting illness and some who have lost a parent. It is nice to know that Bradie is talking to them. She hasn't mentioned it to me at all.

The stress of the holidays, my illness, Bradie's problem, has finally caught up with John. He came down with a case of the shingles. Please keep him in your prayers. He has been a rockstar through all of this. He did actually take off a few extra days this season, which is the first time since we have been married. He took the kids to see Avatar and seems to have had a great time.

Ahhh...nuts!

I would love to start out today's post with a funny ode to paper hospital gowns or something completely obnoxious...but I can't. Give me a minute and I might catch my grove.

Well...no one should have to start their Mondays (especially after a holiday that encourages gorging) by getting on the scales! I did, and don't think I didn't let everyone know the level of stupidity with which I found that idea. Then they made me take a simple neurological test. Tests have never been my strength. To say the least, they were not impressed! Apparently, the physical and mental stress of the holidays were more than my little melon...I mean Big brain could handle. Have you ever seen a stroke or head trauma patient go through therapy? Touch your nose, touch my finger, touch your nose, and over here...hmmm...felt a bit like the hokie pokie. Good news is that I write with my right, and make a mean martini with my left! I have fluid built up in my joints, and they do not really know why, but I told them it is much better than before. I assumed it was normal so I never said anything. Oh well, their loss. I am convinced that it will improve on its own as I become more active. I finished the appointment by getting another vaccine and then giving blood...all before 9am.

I began another stage down on Monday. Whoo-hoo! Once again, they informed me that they are not experts on my condition (as one does not exist) so they will follow my lead. What?! Ok, lets keep going. I have never been patient and I am ready to be off these drugs. "Well, if we hit a snag, we can always go back up," says my genius doctor. Sure, as long as my brains don't scramble. Haahaa, silly doctors.

Alright, so do you remember that they told me to refrain from stress while my brain tries to heal? Yea, me too...but someone forgot to tell the rest of the universe. After a full holiday week, I was sitting on the couch with my sweet 10 year old daughter. I was watching her struggle to see. She kept rolling her eyes. While trying to read, she was moving the book around to see the words. I began to ask questions and she became highly emotional. She has been having severe mood swings, and I have put it off on the impending puberty. While I dreaded the thought, it now sounds like it would be a blessing. Bradie explained that she sees thousands of dots when she looks at things. It is like looking through a screen or at a tv that is not in tune. While she claims that it has been this way as long as she can remember, she has never struggled to see before. I took her to the eye doctor. They ran many different tests and said everything looks normal. He ruled out floaters, migraines, allergies, and every other eye condition he could imagine. Feeling strongly that this is neurological, he referred us to our family physician. We met with them this morning. After her examine, they too feel it is neurological. We have a MRI scheduled for tomorrow afternoon and then will be referred to a pediatric neurologist. "Well, one of our kids was bound to be messed up in the head," my sweet husband says. Yes, he actually thought he was being funny! Truly, we all are at the point of needing to find humor.

Please keep us in your prayers and I will keep you posted as we learn more. Thank you to everyone who has given us support. It is what helps us get through these nutty times.

P.S. Below is a picture of Bradie learning who to make my meatball recipe.

Birthdays are blessings

I remember my 30th birthday being emotional, but today was my 32nd and it holds its own weight. Please hear what I am saying though, they were very different! On my 30th, I had just had a hysterectomy and felt overwhelmed at what I wasn't anymore. I was focused on the things I had not become, the ways I had settled, my limitations. I do not feel that way this year.

I wont lie to you, as I sit here tonight, it would be very easy to focus on the fact that I am so tired I could cry. I could focus on the fact that my hands are trembling and my fingers do not want to cooperate. I could focus on the fact that the only time I have weighed this much was when I was pregnant. But I wont...for very long. Haha Really, I have been completely taken by surprise today by the blessings in my life.

Last week, I decided I was strong enough to return to the gym. Feeling frumpy and horribly insecure, it was a struggle for me. You see, these people in the gym knew me as a very athletic girl who looked pretty darn good in spandex...if I do say so myself! Haha! Anyway, I was working out in a room surrounded by mirrors, feeling a little sorry for myself when it became clear that God allows bad things to happen to good people sometimes...but he always turns it in to something positive. As I was working out, there was a woman running on a treadmill behind me. I could see her in the mirror...but then she disappeared. Even with my headphones on, I heard a thundering boom. The woman had gotten distracted, face planted on the treadmill, somersaulted, and then was thrown several feet across the room. Before you have guilt for laughing, she stood up and was fine. Her headphones where crooked and she was red with embarrassment, but completely okay. But I suddenly felt better about myself and was less insecure. See, God is even in the sweaty stinky places! haha

Yesterday, I began another stage down of my steroids. I am now only taking 25mg of prednisone. While that is still a large amount, I am below half of where I was just a couple months ago. It has now been three weeks since I have had to take my daily insulin, and I have only had to take 3 slide-scale shots. I was told not that long ago that this would not be possible. Out of the 13 medications I was taking each day, I am now only taking 8.

Today, I woke up to see several emails from my amazing friends who were wishing me a happy birthday. I received many more messages throughout the day, and everyone made me feel blessed. I got a call from my Daddy before I had to start my day. This is always a mixed bag for the both of us, because we said goodbye to my grandfather 12 years ago on my birthday. I arrived at the Senior Center to find that my sweet friend Barbara had decorated my office with balloons, sidewalk chalk and confetti! To top it all off, I learned that I have lost 5lbs in two weeks. Whoo-hoo! That is just icing on the imaginary birthday cake that I am not allowed to eat! Jk Then I got to end my day with a call from my mother. It is tradition for her to ask me, "Do you know what I was doing this time...years ago?" It is always the same painful story, the drama grows each year, but I wouldn't have it any other way!

I told many people today, birthdays are not entitlements. Just a couple of months ago, we did not know if I would see this birthday. With the possibility of stroke, coma, and death being risks of every stage down we make, we celebrate today a little more than we normally would. Life is not always easy, but everyday that we have is an opportunity to be blessed. I am blessed everyday in different ways, but I am not always good about acknowledging them. Every time my children climb into my lap and I get to listen to their funny little stories, is a chance for me to remember. Even going into the office when I am exhausted or not feeling well gives me the chance to remember the amazing place I work and the special people that I am blessed to meet and see each day. It really is a blessing to be allowed to be a small part of each of your lives.