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.

Stinking germs!

We have success! Nearly a month ago, I began the scary task of tapering down my steroid levels. For those who are new to the scene, this was a daunting task for me, because the last time we attempted this, I suffered a relapse. The last EEG showed changes to the brain from the relapse and left me with some minor permanent side effects.

We began the stage down to 40mg and stayed there for two weeks. I experienced headaches and fatigue for the first 4 or 5 days. Then my blood sugars began to rise and became unstable. This was what happened right before the last relapse, so it made me very nervous. We continued to pray and continued to rest, hydrate, and give my body every chance to adjust. Sure enough, by the second week, my sugars stabilized and my energy began to come back.

The Monday after we attended the Cowboys game in Dallas, I started the next stage down to 30mg. I had never been below 40mg, so this was a huge milestone. I took off work for a week and rested. Fatigue and migraines were the biggest problem. All of my nerve endings seemed to be screaming at me. I was on sensory overload, but by the end of the first week, I was feeling better.

It has almost been two weeks at 30mg and it looks safe to claim that the new immune suppressant is doing its job! My endocrinologist is so impressed at the success that she even asked me to try to come off the daily insulin that I have been on due to the complications from the steroids. It has been 10 days off the time release insulin and I have only had to take two slide-scale shots! My endocrinologist had told me at the last visit that she did not expect that I would ever be able to come off insulin completely, but it now looks like I may be off of it by the end of the year! I have had to switch to a strict diet for a while, but hey...after being on steroids for the last five months...my booty could use the diet! haha Oh, one last praise...I took the bone replacement medicine last week and everything went smoothly. I had experienced dizziness and blood sugar problems after taking it last month, but this time was flawless!

Okay...here is what I need from my prayer warriors! Both of my children were diagnosed with the flu yesterday. While I have had the regular flu vaccine, they are thinking that this one is either the strain A or N1H1. A non-active vaccine for that one just came available, so I have not had a chance to get that one. Between the steroids and the Cell-cept, I do not have an immune system to fight something like this. The doctors recommended that I check into to a hotel until this blows over, but you tell two little children who feel miserable that they cannot be around their Mommy! I spent $250 on Tamiflu and stocked up on Lysol and chicken soup. Just another adventure at the Dean household!

Still kick'n

Thank you to all of my sweet friends and family who took the time to check in on me when things got a little quiet in the cyber world. There have been ups and downs over the last few weeks, but I am doing quite well...all things considering.

Three weeks ago, I had planned on reducing my work schedule to half days so that I could be rested for the stage down of my steroids. Well, I ended up getting sick, missing a full day, and then having to work longer hours to make up for it...so things didn't go like I had planned. I still staged down to 40 mg of steroids two and half weeks ago. The first couple of days left me very fatigued and all of my nerve endings were screaming at me, but then my body adjusted. I have amazing people around me at work who have had to pick up the slack when I have had to go home early or couldn't get out of bed. They truly are a blessing to me and my family.

This week started the stage down to 30 mg of steroids. This is a huge step for us! I have not been below 40mg without relapse. I have taken off work all week to rest and take it easy while my body adjusts. As with the stage down to 40, I became very sick to my stomach last night and I am fighting fatigue and headaches, but expect to adjust like before. Thank you for all of your prayers. I know that this would not be possible without the Lord's hands.

Speaking of blessings...my sweet friend Randy who knows it has been a dream of mine to attend a Dallas Cowboys game sent John and I to the Atlanta game on Sunday. We met up with friends while there. One of John's suppliers put us up in a hotel and treated the boys to golf on Saturday before taking us all to dinner Saturday night. It was a great weekend! And I must say...anyone who is not a Bradie James fan needs to see a doctor!

Are we really ready?

It is a cool and breezy Friday...compared to what to we are used to around the Hill Country! I just finished having blood work done to rule out lupus and some other pleasant disorders. Just before donating a pint, I was able to visit some amazing friends of mine who are new parents to a precious little miracle baby boy! I watched these two brilliant and well equipped people and still thought..."They have no idea how their lives are going to change!"

That is a resounding theme around me these days though. My life is going to change over the next month, and how it will unfold is a mystery to everyone. I have a bone scan on Monday to reveal the extent of damage that the steroids have caused. I will go next Friday to have more blood drawn to see if I am anemic from the Cell Cept and to find out if I have to add cholesterol meds due to the diabetes. All of this is routine now and I have confidence that we can handle the results from any of those tests. What does have me concerned is that we are preparing to remove the steroids.

The vanity in me is ready to be off the steroids and for my body to adjust to its previous form. While I may only weigh 120 pounds now, I have gained 20 pounds in just the last two months. When you have been little your whole life, you would be surprised how many people think you are unaware that you have gained weight...and point it out! That being said, the risks of coming off the steroids terrify me.

I will work half a day next Wednesday and Thursday, and then take my usual Friday off. I hope that this will give my body the chance to rest. On Monday, the 12th, I will back down to 40mg of prednisone. This is the level that I was at when I relapsed. I was not on the CellCept then, so hopefully this will be less eventful. Then on the 26th, I will try to back down to 30mg. This will be uncharted territory. If we are successful, we will continue to back down the steroids more. If we are not successful...well...I will relapse. With each relapse, I will suffer brain damage and I am at risk for...not good things.

While at Bible study last night, I was reminded of a very popular verse, but one that now has new meaning to me. It is Jeremiah 29:11

For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.

While I know that this verse does not guarantee an earthly future, I hang on the word "hope" and trust that the Lord wants to protect me from harm. Maybe these are thoughts planted by the enemy, but I have been thinking a lot lately about my babies. I have been playing the "what-if" game. What if this does not go well and I am gone, in a coma, or unable to be the parent that my kids need. Have I taught Bradie enough to ensure that she grows into the amazing woman, wife, and mother that she can be? Have I built Logan up to have the confidence to be the Godly man, husband, father, and leader that he is purposed to be? Have I left an example for them to follow that will inspire them?

The real answer is no. That is a job much bigger than me, and I know it is in the Lord's hands. I just pray for peace, and I ask that you pray with me. Pray for my coverage over my family. Pray for strength to follow the path we are given.

Clarity

Today is my day off and the sun is shining. Maybe that is the reason for some clarity. My kids are on a trip with their grandparents, so I awoke to a quiet house. This has given me time to sit and put some thoughts down.

Last Friday, I went for an EEG. That was the test to see how my brain is doing. The first one that was performed the day I was initially hospitalized showed a small bit of damage on the left side of the brain. The test from last Friday showed more damage to the brain on the left side from the last relapse. It is safe to assume that with every relapse, there will be more damage. This is a scary fact, but the one that we face. The obvious question is how to prevent a relapse.

The answer is that we really do not know. We know it is a relapsing and progressive disease, but we do not know much more. We are trying different things, but have no guarantees of what will happen. For those who know me best, you know that is the hardest part. People ask me all the time about how I am doing. This is the truth as I can best describe it:

I wake up each morning and get to raise two amazing children. I get to influence what they eat, wear, watch, and do while getting to protect and challenge. I get to run a house and decide what gets done, what we need, and even what is for dinner. I am blessed to be part of a Senior Center where I help make decisions about ways to grow and serve the members. But I can't make my hands quit shaking. I cannot prevent random muscle spasms. I can't promise I wont fall down walking across the room because my feet didn't get the message to move. I can't control my weight. I have little control over me!

I had an experience last Saturday that scared me and it has taken a week to digest. I started on my new medicine to combat the damage that has been done to my bones from the steroids. I didn't notice any changes in the way I felt, so I drove into town. While at the store by myself, I started to feel different. As I would look around, instead of a panoramic view at things, my brain was giving me choppy snap shots. This made me dizzy. My blood sugars were also dropping, which didn't make sense...as I had just eaten and taken my steroids. They should have been rising. I quickly headed to the check-out, grabbed a pastry and climbed in the car. I was able to eat, but the following minutes are foggy. My head cleared enough that I was able to drive home and climb into bed. I saw the doctor on Monday to discuss what was going on with the medicine. He said that I am probably getting a little anemic from the immune suppressants, but we are going to let my body try to rebound on its own over the next couple of weeks. The dizzy spells are from the bone replacement meds, but they are in my body for a month. We do not know if the symptoms will completely go away or if I will experience the same symptoms every month.

The bottom line is that I have tried to keep my schedule and activities the same because that is all I have control over in my life. Those are the things that make me feel normal. The truth is that we do not know if this medicine will work, but there are choices I can make to help it along. I need to look at the areas I can back out and the things I can let go of for now. This isn't easy for me, so I ask for your prayers, patience, and understanding.

News of all kinds!

Well my sweet friends and family...I have news to share with all of you about the whole Dean Family! I went to the doctor this morning to have another EEG done to see if there has been a progression and if there was damage after the relapse in August. But before we go into that...let's talk about some other rockstars:

Most of you know that my husband, John, fell off a roof a few years ago and shattered his ankle. Plates and screws, countless surgeries, and nearly a year on bedrest couldn't put Humpty back together again because the bone died. He was told that ankle replacements are only good for about 15 years, so he wouldn't be a candidate for another 25-30 years, and even then, he might not have enough viable bone. The ankle would continue to crumble, so they put him in a brace to slow the process. Last year, his doctor told him that there was significant disintegration and he would probably need metal rods added to the joint within the year.

We arrived at his annual follow-up appointment prepared to schedule a surgery that would return him to bedrest for 3-4 months. With my health situation, this was scary for the whole family. They x-rayed his ankle and entered the room surprised. His ankle had hardly changed over the last year. They sweetened the pot by telling us that a new ankle replacement has been invented that will last and they think he will be a candidate for it. If he can wait just 3 or 4 more years, he could get the replacement and not have to ever have the joint fused! The good news kept coming. John has been in pain every day since the accident. They looked at where the pain was coming from and told him it was from scar tissue. They gave him a shot of steroid and the pain is almost completely gone! He feels like a new man.

Bradie is loving the Fifth grade. She was assessed at an 11th grade reading level last week. What do you think the chance is that we will find a book at her level and it will be appropriate? I guess there are worse things to worry about. She received an award today at the pep rally for her assistance with the kindergartners. We are very proud of her!

Let's see...Logan...hmmm....well, he is totally pumped that he is about to lose another tooth! The third grade is rolling along and his teacher was a perfect match for him. He is making progress with his reading. Our goal is to be at grade level by the end of the year, but this will mean a lot of extra work. We are very proud of the extra effort he is giving.

Ok...I started on a slow progression of the immune suppressants Labor Day weekend. Last Friday, I reached the full level. By Sunday night, I was very sick to my stomach. I woke up Monday morning swollen like a tick and sick as a dog (hmmm...detecting a theme). I had a board meeting to attend with a full agenda of serious topics. As if that was not stressful enough, when I got out of the meeting, I learned that one of our exercise contractors had resigned. News had traveled and my office was full of people asking about what had happened. As a result of the stress, my sugars went through the roof, and then I realized I didn't have my insulin with me. I have an amazing group of people at my office who allowed me to go home a little early. My kids were great and allowed me to lay down and rest. The good news is that prior to the immune suppressants, a day like that would have triggered a relapse. While I had effects from the stress (swelling, headaches, increased tremors, loss of balance, muscle spasms), there were not any myoclonic jerks. This has given my neurologist hope that the drugs are helping.

I had my EEG this morning at 10am. They spent about 30 minutes attaching wires and Vaseline to my head! Then I got to relax in a lazy boy while they mapped the brain activity. When they finished, they removed the wires and rubbed the Vaseline with a wet rag. Oh joy! My thin and naturally curly hair that is straightened every morning stood straight up in the air! That was when they informed me that there was not a room available and I would have to wait in the lobby! Awesome! After an embarrassing 20 minutes with strangers, Dr. Yankov peeked around the corner and asked me to join him to look at the EEG. He turned to me as we entered the room, gave me a hug, and said, "Oh, you have gotten all big from the steroids." Ahhhh....I know we have a language barrier my Russian friend...but telling a woman she has gotten bigger is never a good idea in America!

He reviewed the EEG and confirmed what we suspected. There was increased damage from the relapse back in August. He noted though that it is in the same area as the other damage and not at a surprising degree. This probably explains why I have never been symptom free since the initial onset. It also means that the hand tremors and balance issues probably will not get any better. He did soften the blow with optimism about the immune suppressants. He said that he wished we had started them sooner.

The most important news that I have to share is how blessed I feel! For anyone who questions whether God exists, just needs to have walked in my shoes over the last few months. Every time that I thought life was getting too hard, and that I couldn't take another step, God would send one of you my way. It never failed that on a day I was feeling down, one of you would send a card, pick up the phone, or send a random text. Some of you have gone to the extreme with your support and it always leaves me speechless! Some of the strongest support has been from strangers. Please know that it means the world to me! I have received cards from Sunday school classes from all over the State. I read every hand written message and thank God for each of you!

But my mommy said I am special!

I was dreading the Labor Day weekend and questioning if throwing a big enough tantrum would prevent it from arriving. I knew that I had to start my immune suppressing drugs on Saturday. There are many people who take these drugs and adapt to the side effects successfully. However, we are adding immune suppression on top of high levels of steroids...which are immune suppressants! After fighting years of ulcers and gastric disease, taking drugs that are known for causing severe abdominal pain seemed daunting.

I took my first dose of medicine Saturday morning. My daughter woke up that morning with a swollen throat, fever, and body aches. By that afternoon, my son had a sinus headache and was vomiting. Shortly after getting both kids in bed that night, my daughter returned to the living room with a bloody nose. Awesome!

Sunday morning arrived and my children were feeling a little better. John was going to be gone, so my wonderful in-laws agreed to watch the kids that evening for me. I spent the evening with a friend and found myself overwhelmed. I realized that while my life had been shaken. Each minute seemed to drag while we wait to see if these drugs are going to work, make me sick, put me at risk...dominate my life. I know this must sound selfish, but my feelings were hurt that the world kept turning. I felt like the little girl watching her friends on the roller coaster because she was told she couldn't ride.

I spent several hours on Monday reviewing medical journals and articles that my cousin Laura was able to pull for me. I stumbled across some very interesting things. There have been very few patients that have displayed the number of symptoms I have, and few have had them at the level or extent that I have experienced. It was refreshing to learn that there have been a few patients that have been on the immune suppressant that I am on now. Unfortunately, I haven't found any cases where they were able to come off of the steroids completely. Each of those patients also seemed to be classified as having a progressive case. This means that their disease continued to progress rather than occasionally relapsing or permanent remission.

That initially left me depressed and negative, but then I remembered a word...Faith. Who says I will not be the first to come off of the steroids? Who says my disease has to progress? Why are we praying if the future is set in stone. God gave the Israelites manna as daily bread...meeting their needs one day at a time. He didn't promise that it would be easy or without trial. So I am trying to keep the faith.

I will be up to full level of medicine by Friday. My stomach has been a little upset and I run a low fever in the evenings when I am tired, but have been feeling better than I expected. I am exercising a little to fight the bone loss and will begin the calcium next week.