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.