Stress+MS= :(

We thought we were done with relapses for a bit, but we are learning that stress may truly be one of Aaron's triggers. Aaron has been studying nonstop for about 4 weeks now, trying to get his dissertation done before April. He has been going everyday from 5am-10pm. He gets up works all day then studies all night. He doesn't come home until 8 or 9 and never takes breaks. The only day he doesn't work the whole day is Sunday. Thank goodness for 9:00  church so he can take it easy Sunday afternoons. But, about 2 weeks ago I think the stress really started to get him. We had some horrible news about his big brother Nate. Nate was diagnosed with a brain tumor and is going to be undergoing brain surgery in a few weeks. This absolutely devastated Aaron. Especially because Nate had to have extra tests done because they wanted to rule out MS since Aaron has it. The test were brutal and took a tool on poor Nate. (Of course Nate and his wife are handling it so well and our examples to us of faith over fear!) Along with this, Aaron's just got so much on his is plate. We've had some other struggles too, that I'm sure help add stress to his life. I think with all of this his body is getting worn out, run down and allowing his defenses to go down. With that, he is starting to relapse again. About a week ago he started to feel dizzy. Almost to the point he always feels he is on a boat. Then he starts to get headaches and is exhausted and starting Saturday he began to go numb on his left side. We called the dr today and are waiting to hear what next. It's the worst time for this to happen. This could definitely push graduation back and keep him for his goal, which is going to stress him more. It's Days like these I just want to cry and curse MS! I wish I was the one who had it or that there was a way I could keep Aaron from struggling with this. But I can't! I wish I could help with his dissertation. I wish I could ease his burdens and take the stresses of life away. But I can't do that either. All I can do is trust that God truly has a plan for Aaron, for us and our family. I have to believe and trust as long as we are doing all we can The Lord will do his part. Just send some prayers Aaron's way and his brother Nate's way. We need all we can get right now!

Updates

It has been awhile since I last wrote. Somedays I feel silly that I keep this blog and other days I am grateful I have it for a few moments of venting or sharing so I can move on with my day and leave my emotions somewhere. I don't think many check it, but for the future I'd love to have this record of our journey and what we are experiencing.

Aaron is actually doing quite well health wise from at least what I can see. Aaron is trying hard to not focus on the effects of the medication and MS and stays pretty positive. I can tell though the days he is just wiped out and not going to make it past 9 that evening. It is amazing how tired he gets these days. Most nights now he is in bed by 9:30 and the second that head hits the pillow literally he is out. I have some lonely evenings, but I am learning to fill them with blogging, reading, and food network watching. :)  I think the hardest part is always going to be the unknown, the wondering, the what if and the fear. We try to move forward and forget that it is even there, but we always have our moments in the week that remind us life will be a little different from now on. I had one of those moments yesterday. I guess the reason I decided to write this blog post. I was at a shower for a dear friend. During the shower a few friends that no longer live near were there. One who knows our circumstances came over and was asking me about Aaron. I of course never really know what to say. Most the time I just say great and move the conversation forward. I was able to say that day that he was doing good and we ended it there. But, another friend who didn't know about Aaron overheard. Of course not realizing it, she asked me what had happened to Aaron. I then related the story to her. She was in shock, she had no idea. She was so sweet. We talked for a little bit about it. She talked about how she thought our lives were busy and crazy already, but that was like a thick icing on the cake. She asked some questions that I hadn't thought about and made my mind wander and think a lot since then. I've thought a lot about others I know right now facing really hard trials. It me feel sad and a little down. But then I though a lot about my Savior. How he not only atoned for our sins, but he can also understand and literally carry us in our sorrows. We can place our fears with him and truly know that all will work out. I know that it may not be the way I thought it should go, but he won't let us be entirely alone and hopeless. I guess my conclusion to this experience this week is: Move forward with Faith. Leave it in the Lord's hands and remember that this life is only a short time to what eternity will be.

We've recently been in contact with the ER doctor that treated Aaron his first episode and diagnosis. He is an amazing man and continues to remember us and stay in touch. Here is a little bit from his last email:

I am so glad that your family is doing well, especially your husband.  I've thought about him many times since then and wondered how life has played out for all of you.  I'm so glad that your children have their father and he's back in the normal swing of life, despite ongoing challenges and set backs.  As a bishop, I see firsthand how families confront their challenges in life, and I can tell that you are meeting this one head on.  There is a purpose and plan for all that we must endure.  I wish you well and hope for the best as your children continue to grow.

Our son is doing amazingly well, and he has learned a lot of valuable life lessons while in the jungles of Peru.  Bathing out of a bucket has a way of teaching proper perspective and helps align his will, along with the bugs, humidity, extreme poverty and various illnesses and ailments he's experienced.  It's music to a father's soul, but not always to a mother's.

Keep me updated on life's changes and milestones.  I adore your family and am impressed with your simple faith to endure and move forward.  You are truly inspiring.  I admire you as a mother and wife, and saw your strength in our first visit.  I admire Aaron and his willingness to accept that which comes his way and still carry on in his responsibilities as a husband, father and with church duties.  There is a law of compensation, which blesses all who faithfully endure.

I've been amazed at all the great people out there that we've met during this experience. Truly, there is a lot of good in this world. That is what we all need to focus on I suppose. There is so much darkness in the world, but there is so much more light.

This week my thoughts and prayers will be with others who we love that are struggling and facing their own fears. We can't deal with this alone and I hope those I love who struggle know they don't have to do their struggles alone either.

Good news

We heard good news this week... Aaron's medication will now be picked up by our insurance! We also can stay on the free program for the year. So we are very happy! Just wanted to share.

Another exacerbation...

Friday, November 15, 2013: Of course our baby is coming any day now and Aaron is starting to have symptoms of another MS attack. We are waiting until Monday to see if the symptoms subside, but if not we will treat it next week hopefully and get him back to normal before this little guy comes! What does this all mean? We don't know. He's not suppose to have one while on the meds, they are suppose to keep the MS in remission. Who knows! This dumb disease and all the unanswered questions. I feel bad now because I never did email the PA with my questions, I just talked to another person with MS. Which was helpful, but obviously we need to call in a get some answers.

Monday, November 25: Well we've had a whirlwind of a week!  I never finished my post above and we never really took care of Aaron because we had early entrance into this world by our new little guy Taycen Aaron Meacham. Taycen showed up early Sunday afternoon, November 17, 2013. Only two days after I started this post above.

On Saturday, we didn't do much since Aaron wasn't feeling super hot and I didn't feel to great either. Saturday night we didn't get any sleep since I was in labor and poor Aaron had to sit next to me and as I moaned all night long. This caused him to be exhausted on Sunday and by the time night came around he was pretty sick. Unfortunately, the hospital couch chair they provide for a husband to sleep on isn't the place you want to sleep when sick. Aaron toughed it out though so he could be there with me and slept there anyways.

Friday, November 29: Poor guy. Nothing like experincing the birth of your newest child and feeling sick. I sometimes wonder, is this how life will always be? Since then his symptoms have slowly begun to cease and he doesn't feel the numbness anymore. He has had several extreme flushing episodes. I am frustrated because the drugs side effects like flushing should have subsided by now. We've looked into going to the Mayo Clinic in Arizona to get some more answers, but of course our insurance plan we are on doesn't cover it and to move to the plan that does cover it would cost us an arm and a leg to be on. We aren't sure paying the full price for the visit ourselves would be worth it. I am starting to think we should look into just visiting another doctor to get a second opinion on things. Aaron has decided to look a little more into the Mayo Clinic deal and see if there aren't some other options we have as far as ways to pay for the visit, and extra testing they may require. Whatever we do, it will not happen until after the Holiday madness. I am anxious to see Aaron feeling well and back to his regular self.

The hardest part lately, sounds very selfish on my part, but the guilt I am feeling right now. Since Aaron needs his sleep, I am trying to deal with our newborn all on my own at nights. Of course Taycen is a horrible night sleeper and I am starting to be worn down. Aaron wants to help, but is struggling with the lack of sleep he is getting already. I hate that at times I am angry, not at Aaron, but just at the circumstance. I feel horrible the few times I have woken him up in the middle of the night for help, because I was in desperate need of an hour of sleep. I just hate feeling like I am causing him to lose sleep and not feel well, but I also feel like I can't do this all alone right now either. This is the battle I deal with every night. I jump now at every sound Taycen makes because I just don't want anything to wake Aaron if I can help it. It's really been an eye opener to what life with MS may offer at times. I know it sounds silly, but at 2:30 in the morning, it is hard.

The good note of this all is I realize how lucky we are to have Aaron in our lives. He is pretty healthy for the circumstances, he is working, he is doing school and he is pushing through everything with determination. It is amazing and he is my hero! My friend from High School lost her husband 2 weeks ago unexpectedly. It was devastating to hear, and I read a few posts and things from her, my heart broke. She is left on this earth, with 4 children to raise alone. I hear that, and how can I not be so grateful and feel so blessed to still have a healthy, loving and amazing husband here with me.

Though things are a little bit harder than they used to be, I have Aaron here and I am not alone. So I guess I can complain a bit since this is my blog to complain on, but truly I have to remember the how blessed we are. With the birth of Taycen, we both feel he is a little blessing sent here to keep Aaron healthy, active and strong, so that he is around to help raise our little man. Welcome little Taycen, what a blessing and what an time in life to push through the hard and count our blessings.

love The Meacham's

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!