3 month follow up appointment...

It has been 3 months now since Aaron's official diagnosis. What a crazy time it has been! Yesterday we had a followup appointment with the MS specialist. We were anxious to get there and have a list of many questions answered. While there he recorded Aaron's symptoms, reactions to the medication and discussed a few other things that we've experienced. I luckily had written and tracked everything that has happened these 3 months down, so it was quick and easy to answer all his questions. We asked a few of our questions as he asked similar ones. But, he was quick and seemed to be in a hurry. So we were kind of waiting for him to finish, so then we could start firing. Before we knew it, we were being escorted out of the room, left with a list of questions unanswered and frustration building. I had promised I would be aggressive and not leave until all my questions were answered, but I guess neither of us are aggressive enough. It was hard to have a doctor so in a hurry, especially when things are still up in there and we still feel very lost. I'm learning so much about Doctors and the medical world. If you want answers to your questions, you have to demand it and work for it. Our doctor is super nice, but obviously has much on his plate, many cases and is very busy. Our problem, is that this disease is new to us, and we are still in the dark on many things. Combining the two isn't very good. We've decided to call the PA later this week and ask if we can get a few answers to our questions. Hopefully, we will receive a little more clarity.

So I'm trying to walk away from the visit looking at the positives:

1. We now know that most likely the medication is working for Aaron, despite the side effects, which should have subsided by now, but of course haven't. We won't know completely for sure if the medication is totally working until in 8 months when he has his next MRI. We can guess that it is doing it's job because he hasn't had a flare up for two months. (He did have a flare up the first month he was on the meds but that Dr. mentioned it might have been to early for the medication to have any effect yet.)

2.  The Doctor is pretty confident that the medication should be picked up by our insurance company. We hope his confidence proves to hold true, but we won't know until Dec.

3. We also found out that Aaron's body is healthy enough and capable of being put on an even more aggressive and intensive form of medication if this medication does not work. That is a comforting and good to know for the future.

4. Aaron had blood work done yesterday that will help us see how Aaron's body is handling the medication he is on. It will show if his kidney's are okay and if it is not have a negative effect on everything.

5. The doctor did inform us that Aaron can have a flu shot, but suggests that if he can avoid it to do so. He confirmed our fears about Aaron's immune system, obviously with the medications and what they do, they make Aaron much more susceptible to sickness.

What we are still unsure of:

1. Why is Aaron still experience so many side effects and MS symptoms? Is that normal or should be watching him?

2. He has a persistant "eye" headache that seems to be a strange symptom that continues to appear. We'd love to understand more about this and if it has links to the NMO or MS.

3. If the insurance company doesn't pick up the medication. Should we continue with the drug for this next year or do we just move on and try something new?

4. Different effects of the drug he is on and how to ease the symptoms.

There are so many more things on my mind... I think I learned yesterday that we will always be somewhat in the dark and always have questions. It is a unpredictable disease and you never know the direction it will take. It is hard to go to the office of the MS specialist. a majority of the people there have walkers, canes or other noticeable disabilities. I have to remain positive and think that everyone's case is different, and since we are in a day where the drugs are more advance, maybe Aaron will never get to that point. Thus, we are happy that admist the uncertainty and many questions... things are good. Aaron is working, serving, playing and being the man I love. We need to stay focused on that and try to just enjoy the good days.

I need to tell Aaron that I love him and no matter what wouldn't change the way our lives have gone. He is worth it all. I have the sweetest, kindest and most loving husband. No matter what, he will always be my best decision ever made. Love you!

We also want to thank Joyce who watched the girls for us while we went to our Dr. visit. The girls loved it and were well taken care of. Thank you again for your service!

Much love
The Meacham's

MS Truck

All ready for the MS truck...

Do you ever have those times in life where you realize that there were things, events or people all around you that you never noticed before, that is until an event linked you to those things? That didn't make sense, here is an example: when we were looking for a car, we researched and looked everywhere for specific cars. We finally narrowed it down to a few specific types of cars we liked. While deciding I couldn't help notice how often I started to see those specific cars around, they were everywhere! Why hadn't I noticed them before? They were always there, but now I finally had a link to them that made them noticeable to me. Anyways, that probably still doesn't make sense, but I've realized this is kind of how it is like with most diseases. We don't really notice, know or learn a lot about most of the diseases out there until we are faced with watching a loved one or our own self dealing with it. Before Aaron's diagnosis, I had no idea what MS was. In fact we had learned a friend of Aaron's husband had been diagnosed with it and we just both felt like that poor guy, dealing with that disease whatever it is. Not that we meant any disrespect, but we just never had experienced it before. Well, obviously now we know more than we wished we had to. I notice MS things everywhere now. It is a part of life and we will always be linked to it. I realized the other day that for years I had been receiving a flier from the MS association advertising their truck. It comes to people's homes, picks up unwanted items and then takes them and uses the funds it receives from them to help with MS research. For years I've chucked that flier even before I read it, it was junk mail! But, of course, this time around, I read it and saved it. It is linked to me and I noticed it. I made an appointment for the truck to come to our house. Then I took all the stuff I was going to sell at a garage sale and packed it up and put it on my door step. I felt I had to do this. It was weird. I had to show my support and prove that Aaron's health and future wellness was more important to me than the $200 I was going to make trying to sell everything. I know that my few donated items don't do much, but it was more a symbolic representation to me that I was accepting the fact that Aaron does have MS. He will always have MS and I will have to be his biggest support system through it all. I know, I am strange, but it was a feel of peace as I did. Anyways, if you have a lot of stuff and don't want to drag it to DI (which is another great cause that Aaron's work endorses) call the MS truck, or another truck with a disease... support those who have to live life a little bit differently because they have some type of something holding them back from the life you live. Notice things if you can and find ways to support them. I am grateful that I learned this lesson about being a little more aware of the surroundings, people and circumstances around me. Thanks MS truck for this experience. See you again soon! Jamie

No flu shot = sick people stay away!!!

Aaron was informed today to definitely not get a flu shot... It could cause him to have another flare?!!?! I'm realizing that our winters at the Meacham home will need too be different for now on, especially this winter with a new baby! After Aaron's last stomach flu we know that it is hard for him to fight off infection so we have to be so careful that we keep him from getting sick. With a new baby  too, we have got to keep everyone as healthy as we can and keep our house quarantined! So with that said, we will have to find a way to not be offend others when we tell them tht we can't come to an event, house or place where there are sick people or if we don't let people come over to our house when they've been exposed or sick! I know that we can't prevent everything, but we are going to have to try. I guess I'll also need to go out and buy some hand sanitizer and Lysol wipes! Funny how I sit here writing this while I'm deling with my first cold of the season! I never understood those overprotective germ phone people, that is until now! Here we go!