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!

Another miracle!

Just a quick update...

Saturday morning Aaron took his last pill and Saturday afternoon his new drugs showed up! They overnighted them for us. It honestly was a miracle or should I say a huge blessing from The Lord! I've honestly never witnessed so many personal miracle/blessings in my life in such a short time. The Lord is truly mindful of us. Aaron is back on track with medication and we have a year of cost free medication! I have to express my gratitude to The Lord for this blessing. Things are tight with medical bills and new baby etc.. Truly it is one blessing after another admist the craziness of this all.

Thanks to those others who have quietly offered help, support and prayers. It has all been such a help! How did we get so blessed with so many amazing people in our lives???

Loves to you all!
The Meachams

The $100 Pill

We found out this week our insurance doesn't cover Aaron's medication. AHHHHH! We were misinformed by the pharmacy in the beginning on how the first two months prescriptions were being filled. (We were on an introductory program that cost only $10 a month)

While at the Techfidera dinner Aaron spoke with a few others who had the same insurance as we do and discovered he was not being covered?!?!! We called the insurance the next day... sure enough, we weren't being covered. Aaron called the drug company and was informed that our next bill would cost $3700! Ouch! We were just sick. What do we do?

Luckily, we found out from the drug company there is a program that you can qualify for to receive a one years supply pretty much free. We were anxious to see if we could get in on this program. Aaron applied last week, but was told it would take 3-4 business days before we would know. We were hopeful we would qualify since we have 3 kids and our income isn't substantial by any means. But, we didn't hear anything this whole week and Aaron's meds are running low. (We were told if he went off them suddenly that he would most likely relapse!) So, yes, we've been a little anxious and stressed.

Today we received the wonderful news that Aaron does qualify for the program... What a blessing!!!! We are now just waiting to hear from the pharmacy when the meds will be sent and we are just hoping they get here before his supply is gone.

Our other hope is that the insurance company will pick up this medication soon. They only review new meds once a year in November. So pray that in November that insurance picks up this med. or in a year we will have to go a different route, which would be like taking a step back.

Here's to the $100 pill that is helping keep my hubby healthy!

Tecfidera Dinner

Aaron was able to attend a Dinner tonight that was put on by the drug company he gets his medication from. I was bummed I missed out, but glad he was able to go. They had dinner, presentation and then Q&A with his actual specialist he goes to. The presentation was put on by the drug company and was of course very cheesy and scripted. After though they talked a lot about MS and then had people write down questions for Dr. Foley our specialist to answer. Aaron learned a lot, and I am kicking myself I wasn't there to learn more too. We've had a few questions about the drug that were answered, so that was really good.

I think it was a hard night though for Aaron too. I feel bad I wasn't there to support him. I think seeing so many people there with MS and so many of them struggling with some major health issues was hard. He came home positive about the information learned, but a little down about the issues, people and things he saw. I think it was yet another wake up call to us both, that this isn't going away and the pretending that nothing is wrong will occasionally come back blarring in our faces. We've really tried to be our normal selves, which is good, but then you have moments like tonight that just make it hard.

We are grateful he is on this medication and hope/feel that it is the right one for now. We are learning we may have some complications with our insurance about it and are looking into all of that right now. It is so scary to think how much meds really do cost and how lucky we are to have health insurance that can cover most of it, at least we hope :)

We are trying to continue to stay positive and look at this as a day to day thing. We can't see the future and just have to trust that it will be good, that Aaron will be healthy and that we can live life to the fullest!

Sick

This past week Emmy came home with a little stomach bug that she caught. She was only sick for about 24 hours and then back to her normal self, luckily! Unluckily (if that is a word) Aaron caught the bug and his wasn't so easy. It has taken him almost 5 days to recover and get back to his regular self and eating. I've never seen the poor guy this sick. We wondered why it hit him so hard, and why he was the only one to pick the bug up. We started looking into his medication he takes for MS and saw that one of the things it does is decreases the white blood cells. Which means he is more prone to catching sickness and having a harder time getting rid of it. This week was a prime example of that I suppose. We kept thinking Elsy and I would get the bug, but we were fine and Emmy only felt really sick for a few hours. But poor Aaron, missed 3 days of work and didn't eat for 4 days. Yes, he looks like he's lost at least 10 lbs. which is a lot on his already slender body. (Don't worry, I'm making brownies for him tomorrow, which are illegal in his diet, but I know he can't say no too and will help plump him up a bit!)

Anyways, it is just amazing to me how each experience that we come to, is so different now as we face it with this disease. Things that once seemed so easy and not a big deal in life, now seem to impact us so much more. He was able to receive a blessing today from his father and is feeling much better.

I've decided the hardest part of this whole journey so far, is watching him struggle with this new disease and the impacts it is having on his life and not being able to do much about it. Aaron is trying so hard to stay positive and press forward. I know though that he hates the new limitations it is having on him and the way it has seemed to slow him down a bit in the fast paced life he lives. He will come out on top eventually, and I know we will get him to what we call a new normal. I think this week was just hard for us, a set back and another eye opener that we don't have control of everything. But, it is also a great reminder to us that we can and will move forward and really can live with these life changes. We know that everyone has their challenges. We never want to seem like we are complaining or thinking our lot in life is harder than someone else. We do feel that for us, this is a time of growth, stretching and faith. We do feel that the Lord is there watching over and helping us. We also are so grateful for the amazing friends and family we have who are supporting us so much. We definitely need to give a shout out to our parents. Both have been great, Aaron's parents have been our constant babysitters, supporters and his dad has been a huge help with blessings and guidance. My dad has been here 3 weeks in a row mowing and taking care of our yard, and both my parents have also been baby sitting and bending over backwards to help. How blessed we are.

Onto another week we go. Love the Meacham's

Appointment postponed

Sorry for the lack of writing the past few weeks. We are kind of in a limbo right now and don't have much to update on. Aaron went in to see the PA a few weeks ago. She pretty much advised us to wait to go see the Specialist until Aaron has been on the medication for at least 3 months. Then we can really discuss if the medication is doing what it needs to do, compare symptoms, and discuss everything after we've had some time to observe. I agree with waiting a few more weeks, even though I have a ton of questions still. They will be answered and we will get it all figured out eventually. We've been keeping a symptom journal and I make Aaron daily report to me how he has felt that day. We are slowly starting to see patterns of if he doesn't sleep well, if he gets stressed, if he takes his medicine at a later time or if the conditions Aaron is in are too out of the ordinary for him. We are hoping most of the symptoms are medicine related and not MS symptoms. It is hard to distinguish, but we feel tracking it and watching when and why they happen will help us collect the data we need when we go in to see the doctor in October. Aaron did get some more blood work done. Mainly to see if his body could tolerate and handle an even more effective and aggressive medicine. So that is something we are going to be looking into at the appointment too.

We will keep you posted after that appointment. Until then we are just trying to live life normally, help support Aaron through the tougher days and spend time as a family before we grow even bigger in a few months. We hope to have some answers before the other big changes come in our lives. If you know me, I like things in order and not so up in the air. It would be nice to not be living in such a limbo, but I think this disease will always be that way in some way and we will all just have to get used to that.

Aaron has taken the semester off from school. We hope that by December we will have a little better knowledge of how to handle his disease and how to keep him feeling well enough to focus on more things. Until then we felt it was a good idea for him to take that stress off and focus on getting better. It was a very hard decision, but we feel good about it.

Thanks for all the continued love and support throughout this whole thing! It is really becoming a day to day thing. We are just trying to enjoy the little things and time that life has to offer. We feel extremely blessed right now and feel that we are being watched over and protected.

MS = Meacham Strength

For Aaron's birthday my brother-in-law Dru had a brilliant idea of making MS=MeachamStrength bracelets for our family to wear. They are awesome...

It's hard to read the band in the picture, but we are loving them and all sporting them. 

If anything I think these bands bring us all closer together and remind us that this life is about family, supporting each other and being there for one another through it all. I hope we can be a great support to the ones we love just like they've been for us!

If you want a band, let us know! 

Together we can all be stronger and have the strength to get through this life!

Yucky HEAT!

We learned the hard way yesterday why every person we've met with MS says "avoid the heat." We went out for a fun summer family outing outdoors yesterday. It was a great time, but Aaron was super sluggish. By the time we got home a few hours later, I couldn't believe how flushed and exhausted her looked. We just had no idea what the heat could or would do to him. Unfortunately, it lead to Aaron feeling not so hot and falling asleep at 8. His eyes were hurting, his head was on fire and he just felt awful. It was a big reality check that life indeed is different in our little world. We keep trying to get back to normal and do the things we usually do and love, but today was another wake up call... life will never be the same. I know this seems so silly. But, it is hard. Aaron is just struggling with his health, energy and feeling up to par. I had no idea how hard it would be to see the one you love struggle. He hates that he feels this way, and so badly wants to get back to normal. We meet with the doctor one week from today. We hope to get some more clarity on the whole NMO situation and on Aaron's health. It's hard to know why he is feeling the way he is and what is causing it. Is it the drugs, the MS or the infusion effects? Hopefully we will know soon! :)

I guess we are still in the learning phases of the disease. Eventually I know we will figure this all out! Somedays it is still a shocker to the system. Thank goodness we aren't dealing with NMO. We are so grateful for that!

I guess we will be staying out of the heat and staying cool more often.

Great News... NO NMO!

Aaron just got a call this morning from our Doctors office with some good news... Aaron most likely does not have NMO after all. We don't know exactly what the mistake was, but they are saying his first blood test was + with NMO, but this next one wasn't. So they're still a little confused, and so are we, but it most likely isn't NMO since he really does not have any other symptoms or tests that show positive for it other than his first blood test. We are so relieved. NMO made MS seem like a breeze. So hopefully we are back in the breeze zone. We meet with the Specialist Aug. 19 to go over everything and talk about why Aaron is still struggling and feeling so yucky! At least the darkest cloud that has loomed is gone and we can breath a sigh of some relief. 

Unfortunately, Aaron had to spend his b-day weekend in the hospital getting infusions...

Not a very fun way to spend a birthday!

We are hoping this will help with his latest MS symptoms and that he can get back to normal. 

He's had a few side effects that have worried me, but it's so hard to know where it is all coming from... the new drug, the MS or the infusions side effects. Here's hoping he will find some answers in the next few weeks and we can finally be honest when we say we are doing good! 

After this past week though and the fear that came over us with the NMO lingering over our heads, we are feeling so blessed and so relieved. Thank you to those who have supported us through this all and have fasted and prayed. I truly feel like again we just witnessed another amazing miracle from the Lord. 

We will keep you posted after we meet with the doctor and learn a little more about what truly is going on!

Thanks again for everything!

Love The Meachams

Our special Birthday boy!

This year Aaron's birthday has a little bit of a different feel to it. It is hard to explain... He is turning 32, he is so young with so much life ahead, but with recent events from the past few months we realize what more we have to celebrate! Everyone of us has something big to celebrate each year we live another year of happiness, health, faith and with love.

I was running with my dad the other morning and I started to talk about Aaron. I started to tell my dad how lucky I feel to have had the past 5+ years with Aaron as my husband. It took me awhile to find him, and a little more to realize the amazing gem I found. Once I realized it, that poor had no chance! I truly won the Lottery of Life by getting the boy to marry me. As we continued to run, I had time to think about Aaron. I thought a lot about the past 6 years I've known him. Such a short time, yet I feel i've known him truly since forever. I really feel like I began to live when he entered my life. He has been one of the greatest blessings and joys in my life. He is my best friend, my soul mate, my partner in crime and my most trusted confidant here on this earth. I truly am so glad he is mine and I am his.

I known so cheesy and sappy, but so true. If you know Aaron, then you will know why he has made my life so wonderful.

I just really wanted to honor him today by sharing some of my thoughts about him. It is really for him to read, but I thought why not share it on our blogs for others to learn more about him if they choose.

People ask me all the time if he ever yells or gets really mad at me or others? No, he doesn't. He really truly doesn't. He definitely has his moments where he is upset, but he seems to cool off so quickly and let things go so easily, it is truly amazing to me. Especially because I can be so hot headed at times. Others ask me if he has things he does wrong? We all do, but really the only thing that stands out to me that he struggles big time with is his driving. He sometimes gets mad in the car and at other drivers, I really think it is funny and just laugh at him.

Aaron is really quite funny. You really have to know him well though to see this side of him come out. I only think there are a few people out there that really know the "true" Aaron. He comes off very shy and reserved. But, he can be really fun, funny and outgoing. Sometimes we just sit in bed and laugh so hard.

Aaron likes almost everyone he meets. He always thinks the best of them and gives them the benefit of a doubt.

Aaron is a man of great faith. He studies the gospel fervently and truly tries his hardest to serve to his best ability. He loves to serve and always puts the Lord first in his life.

Aaron works hard. He never stops. He never relaxes and doesn't allow himself to be idol. It's hard to ever get him to just sit down and relax. He is busy and loves it. He keeps us on our toes here and he always has an adventure planned.

Aaron is bright. He is a dictionary when it comes to words and their meanings. He is always thinking and sharing new ideas. He loves to be informed, and current on life and the world. He works hard to keep his mind active and bright. He studies hard and truly loves to learn.

Aaron is a good dad. He is so caring and loving. His girls adore him. He is learning how to discipline. He is too nice and is learning how to be a little more firm. He gets frustrated when he does discipline and hates to see the girls cry. He has the biggest heart for his girls and loves them so much. I love to watch him play and read with the girls. His greatest desire is to raise them to be strong, faithful and virtuous women.

Aaron is a fantastic husband. He will tell you differently if you ask, mainly because he has no idea how good to me he is. It's just how he is, it isn't something he has to work at or think about. He always is serving me in some way and thinking of how to ease my burden. I know he loves me and he truly is a sweetie.

Aaron is a worrier. I share this as a good quality. After most conversations or other experiences he worries about how it went. He wants so dearly to make sure he never offends or hurts someone else. I have to constantly remind him that what he does or says was good. He truly cares about others and wants them to feel appreciated and cared for when they are around him.

Aaron hates attention. This is why he will hate this post, why he hates his birthday, he hates having to ask others for help and never wants me to do anything to honor him. He likes to be on the sideline and help others shine.

 I'm so grateful for this amazing man in our lives! 

Happy Birthday Aaron!!!

We love you more than you will ever know.

MS-Meacham Strength!

MANY steps back...

This morning we recieved a very sobbering phone call. When Aaron was first diagnosed they mentioned that his blood work showed that he tested positive for antibody in his blood that is an indicator of an another disease that is similar to MS called Neuromyelitis Optica which  presents it self almost in the same way. The doctor was pretty positive Aaron did not have this, but felt like he better retest Aaron for it since it did come up positive in his blood work.

What is NMO, Nueromyelitis Optica vs. MS?

Neuromyelitis optica (NMO), also called Devic's disease, resembles multiple sclerosis in many ways. It was first identified in 1894 and characterized by its tendency to selectively and severely affect the optic nerve and spinal cord. But for about 100 years, NMO could not be distinguished from multiple sclerosis. Research conducted over the past 10 years — much of it at Mayo Clinic — shows that NMO and multiple sclerosis are distinct illnesses that take different courses and need different treatments. Because of this, researchers have found ways to differentiate between these diseases and more quickly diagnose NMO. Both diseases affect the central nervous system. In NMO and multiple sclerosis, the immune system reacts against the body in what are often termed episodes or attacks. These episodes cause inflammation and destruction of cells. In NMO, the primary targets are optic nerves and the spinal cord. The optic nerves and spinal cord are also commonly affected in multiple sclerosis. Those are the similarities. But there are also a number of differences. Patients with NMO often have severe, rapidly worsening symptoms. When the optic nerves are affected, blindness can occur. Likewise, when spinal cord cells are damaged in NMO, patients may experience paralysis, loss of bladder and bowel control and, occasionally, breathing difficulties that can prove to be fatal. Patients with NMO may also have episodes of vomiting lasting for up to a month — not a symptom of multiple sclerosis. In multiple sclerosis, initial episodes usually are mild and not life threatening. Over time, patients with multiple sclerosis may develop disabilities including paralysis (most typically in the legs), but permanent disability often tends to develop gradually and not as a result of sudden attacks as it does in NMO. We've learned that patients with NMO usually have normal MRI brain scans early in the course of the disease, while the brain scans of patients with multiple sclerosis may show abnormalities. About 80 percent of patients with NMO have distinct, long lesions in the spinal cord on MRI that aren't present in patients with multiple sclerosis. In the most significant discoveries so far, Mayo Clinic researchers have identified both a unique antibody associated with NMO and the target cell that the antibody destroys. Antibodies, activated by the body's immune system, are typically used to fight off infections. The antibody, called NMO-immunoglobulin G (NMO-IgG), is present in 70 percent of patients with NMO. Patients with multiple sclerosis do not have NMO-IgG. With these findings, researchers developed a blood test that greatly aids in accurate, rapid diagnosis of NMO, which is critical for improved outcomes.

We got the blood work and new MRI's done a few weeks ago, but hadn't heard mush since. The blood work takes awhile, but we kind of assumed he was fine since we hadn't heard anything yet. We also felt pretty positive all was well with Aaron and that life was finally getting back to a new normal for us. That is until Monday Aaron began to have some numbness and pain on his left side again. We assumed it was another MS flare up and reported it to the doctor's office. Tuesday they called back but we missed the call and didn't get back until they were closed. They called again while Aaron was in meetings on Wednesday night and this time left an urgent message that he needed to get back to them. This morning Sally our MS specialists PA called. She explained to Aaron that he indeed did test positive again for Neuromyelitis optica, and that his spinal cord had a lision you usually only see with NMO and that we needed to get into see the doctor ASAP. She mentioned that they are very confused about what is going on. Because as you can read above he has symptoms and problems with both diseases.

Perplexed and unsure we all are now. They hope to get Aaron into the doctors soon to get him some more infusions to take care of the numbness in his left side, but we are unsure how soon until we can get back in to see the specialist. The scary part is that this means the medication he is on is probably not working and that he is just sitting and waiting once again. We really don't know anything now and feel very lost.

We hope this helps people kind of know where we are at right now. It also shows what our hopes are in getting in to see the Doctor ASAP, getting the numbness away and hope we can nail down what is really going on. Again, the biggest way to help right now is to just keep Aaron in your prayers. We will try to keep everyone posted as we learn more.

Double dose

A few people have been asking how the second dose of the medication is going... It hasn't been too bad. Well at least from what Aaron says it hasn't, but I never truly know with him! He definitely has had some of the side effects, but he is able to go about his normal day fairly well. He continues to be exhausted and at times not feeling the greatest. We are taking things slowly and not doing as much as usual. We had a great little relaxing trip over the weekend, where Aaron could take naps, take it easy and focus on other things. It was a good time to do it since he was doubling his dose. Today he had some problems with his MS and we are hoping it goes away. He of course is upbeat and staying positive as always. Nothing seems to slow this kid down.

Just so you all know it is Aaron's birthday on Sunday! If you want leave him a birthday comment or email me. I know he could use a little pick me up right now! Stay tuned and we will keep you all posted on how things continue to go!

Love the Meacham fam

Just feeling Yucky!

I finally got Aaron to admit to me that he just doesn't feel great. He won't be happy that I am writing about it either, but I need to for some reason, it's how I am dealing with it all I suppose.  I think his body is adjusting to the changes the medication is causing and the other symptoms he has been feeling. It is so hard to watch him struggle. To the rest of the world you would never know. But, to me, I know him so well, see him after a long day at work, and I know. He is so strong. My dad and brother-in-law keep telling us that MS stands for Meacham Strong, Meacham Strength or Man of Steel, and truly that is what Aaron is. I just hate that he can't take it easy sometimes and slow down a little. I also know that Aaron is the happiest when he is busy. I hope we can find some middle ground here. We are so grateful he is on this medication though and that he is responding to it fairly well. He doubles the dose this week, so we are really hoping he responds well to that. I think the hardest part is having to sit there and totally feel helpless. There really isn't much I can do for him. I am cooking healthier for him and being a mom to him about his sleep, taking it easy and other things. But, that is really all I can do. If you've ever had your loved one deal with something really hard, and you just feel helpless in truly aiding and helping them, then you will understand.

Aaron is such a fighter and so faithful. I really stand in awe at him and his strength. He is much stronger and more faithful than I could ever imagine to be. I feel so blessed to have his faith and example in my life. We continue to see many little miracles though and feel so grateful for our knowledge in God's plan for us.

I do want to give a shout out to Aaron's friend Ben who came on Sat. and helped Aaron with some of his school work. It was truly another little tender mercy of the Lord and we thank Ben for his time and sacrifice to do that.

We have some appointments set up for this month to get some paper work done and then a follow-up visit in October with the specialist. Until then and as long as things are not too bad, this is pretty much all there is to tell. I may write to share a few feelings, little things we experience or learn, and how Aaron is feeling. But, forward we go.

Update

I have had a few people ask me for an update on what is going on. We've actually had another little miracle today! Aaron's medication showed up on our door step. It took less than a week! They were telling us it might be a month or more! Ours took less than a week. They called Monday to tell us that it was on its way and today it was there on or door step. I really can't explain what a special blessing that is! I am telling you all those prayers, fasting and more prayers have really paid off! Thank you, thank you to those who have cared and remembered our family!

We are anxious to get him started on the drugs tomorrow, but a little nervous... Aaron especially. We re-read all the side effects tonight and are hoping he doesn't experience many of them. We will just have to wait and see.

As far as Aaron's health goes. Physically he is doing pretty good, he has had a pop up here or there of his speech slurring. We are hoping that the drugs will kick in pretty quick here before he might have another flare. We are pretty confident he will be okay.

He had another MRI done on Saturday. It was long and rough. I think he is ready to be done with those for awhile. They are a little bit of drain emotionally for us both, and I think we are hoping the results will be good. He also finished up his blood work. I think he is happy to have all the poking done for now. We don't know the results of those tests, and probably won't for awhile. I have been asked several times what  they found, and unfortunately it may not be something we know fully all about until his next official doctors appt. We do know if something really bad were to come up, then they would call us in. We will try to keep you posted on anything we learn.

Here we go, we are trying to live our lives normal once again. Most days have been good and we even feel like we are normal again and this was all a bad dream. But, we do have those days where we wake up  and still question, wonder and fear. I'm not sure we've completely faced it all and feel like we are totally strong about it. That will come with time. We appreciate the love and support of those close to us. We have felt so much love. Thank you for your patience with us as we are trying to figure this all out. Some days I personally just don't want to talk about it, and others I do. We don't want to make people feel bad if we aren't up to talking about it, we just are trying to face it one day at a time. That is mainly why we have the blog. We hope it answers questions and allows you to understand where we are coming from.

Much love,
The Meacham's

Answers

Yesterday we finally were able to get a clear idea about Aaron's disease and start planning our next step. Though some of the things discussed at the Doctor weren't easy, we left feeling like we were on cloud 9...we finally have a direction and hope for Aaron's health.

The past two days have been a whirlwind, tiring and hard, but in hind sight, they have been really informative and good.

Yesterday, around 12:30 we headed into the Specialists office. After about a half hour of paper work and another 20 minutes of waiting we were lead back to a room. In there the nurse took Aaron's vitals and then we waited some more. It was amazing though how this time around we were so calm. It was so comforting to just know we were there and that we were finally going to talk to someone who really could help!

After a little while the PA came in. She was kind older women who knew her stuff. She started at the beginning. She had all our recent events from the ER to nuerologist written down already. I was amazed at how well the hospital/nuerologist had recorded our experience thus far. It saved the PA some time. Anyways, we went through every symptom and experience we could recall these past few years that might have been a sign, symptom or episode Aaron had. She recorded everything. She then examined him, and asked many more very thorough questions. I was amazed how long she spent talking, questioning, and examining. I believe it was over an hour. It was so comforting that she was looking at it from every aspect. We actually started to realize that there have been a lot more episodes or symptoms that Aaron had these past few years that most likely were flare ups from MS. The more we talked the more we learned and discovered. She was very good at explaining why she asked certain question and how those questions could link things to MS. I was very impressed. It was already a night and day experience from the nuerologist.

After a long chat, and she finished the exam she went to meet with the doctor. They discussed things for awhile I suppose. About 20 minutes later Dr. Foley came in. He was the jolliest and kindest man. He was very kind and very on top of it... we were impressed! He definitely knows his stuff. He began by asking a few background questions, but seemed to have a pretty good idea already from what his PA had told him about Aaron's case. He asked who had referred us to him and we told him Dr. Hasleton. He was like, "Yes, he called me that very day you were in the ER. I'm sorry I've been out of town and that we are just meeting!" We knew Dr. Hasleton had had our backs all this time!

Anyways, he started with bringing up the brain scans. He reviewed them once again. We were a little more prepared this time to see them and hear what he had to say. I don't really want to go into the details of it all. I will just say it was hard to see and hear. But, we aren't going to focus on that, because it is what it is... it is done and we are moving forward now. After that he mentioned the rare case that Aaron was. He had no hereditary link to MS, his symptoms are a lot less common than some MS patients, and he was testing positive in his blood work to another disease that shows itself much like MS. But... the brain scans pretty much identified that it was definitely MS. Even with the confidence that it was they will still  have Aaron get tested for the other stuff to double check.

He then started sharing his thoughts about Aaron's condition and where we go from there. The good news from what he shared is that Aaron has the type of MS called RRMS. Which means it can be pretty well controlled through drugs! Which also means that if we get him on the right drug, it will most likely either slow or stop the nerves from being damaged. It doesn't make MS go away, but it controls it and allows a person to live a pretty normal life. This was encouraging to hear. He continued to tell us that we need to get Aaron started soon. I guess MS is more common in women and less aggressive, but when men get it, it is a lot more rare and much more aggressive. With that said, the sooner we can get him medicated the better. He then started talking about the drug options. I liked his approach so much better than what the nuerologist had said. He said there are certain kinds of "old" drugs (like the ones the nuerologist wanted us to take) but the newer drugs were much more effective. He said that one of these was the drug he wanted Aaron to start using. It is pretty aggressive and should really help him. The good news is, if it doesn't do the trick, there is an even stronger medication available. The reason Aaron can't be on that yet, is the insurance companies want evidence that we tried other medications first and they weren't doing the trick. So silly, but unfortunately how it goes. But, we feel good about the medication Aaron will be taking. It is an oral medication which is huge. Most old MS medications are given through a syringe (shot). Unfortunately, wether they are old or new meds, they all have nasty side effects. The med that Aaron will be on, starts out okay for the first week, but on the second week the double the dose and then some not so fun stuff could and most likely will appear. If it gets too bad, they can go back, readjust the dosing and then go back and more slowly introduce him to the larger doses. But, we really need him, if we can to get on those high doses quickly! The other downside to the medication is the time it will take before we actually get it! It will most likely take a month or more. I guess it is very hard to get the insurance companies and drug companies to work together to approve the drug. There is a big process and it will take some time. Once it does get approved they only have special pharmacies that actually make the drug. This type of med. is made in a pharmacy that will actually get it, and then mail it out to our home. So we are in a waiting game again with the drug. Once that it finally does come, Aaron will take it for 3 months and then we will go back and reevaluate if it is working. I just keep thinking, can you imagine if we had to have waited clear until September for our first appointment??? then it wouldn't have been until oct/nov until we even started the drug and who knows it if will even work. We are so glad we got in yesterday for this very reason!

After Dr. Foley left, the PA went ahead and introduced the drug to us, told us all the details, symptoms and what to expect. She then set us up for Aaron's next MRI and blood work. Then we were done. We walked out, overwhelmed but elated that finally we have some direction.

What a blessing and miracle that we were able to get in and even more so, to get going on ordering the drug and moving forward. We are finally to the point where we can actually accept the fact that MS will be part of the rest of our lives. It is still hard, I find myself at times wondering and having some sadness. I have listened to a lot of talks the past few days about faith vs. fear.


Common questions we keep getting and their answers:

1. If we had discovered Aaron had MS earlier, would it have helped?
             Well, just like any disease, it is good to catch and start treating. But, we are not going to go there and wonder what if? We can't, and we can not dwell on it. Again, as I said before, it is what it is and we have to move forward.

2. What are Aaron's limitations going to be?
            We don't know that exactly. MS affects everyone very differently. We are going to to ease him back into the his life and goals. Then we will see where it takes us. Who knows maybe it will push Aaron to new limits? Check out this link if you get a second and you will see what I mean:

http://www.ksl.com/?sid=25951231&nid=1010&title=despite-multiple-sclerosis-man-trains-for-kona-ironman&fm=home_page&s_cid=queue-8

3. Do MS people die earlier than expected?
             Yes, I know people have been wondering this question and I did to in the beginning. Just like us all, we don't know when our time will be to go. But, with most people with MS they say their life span should generally be the same. It is crucial though that they take good care of themselves and monitor the disease closely.

4. Is Aaron having symptoms now?
             After receiving the steroid infusions for 3 days, Aaron's symptoms are about 90% gone. He still finds times he is having to focus on what he is saying and he has experienced some exhaustion. Other than that things are pretty normal. I am sure the shock of this all has caused some other things to be a little off, but hopefully between now and the time he starts his drug he will not have anymore flares. It so, he will go back for more steroid infusions.

5. What other things other than medication are you doing?
               We've heard it all by now. We've read it all and keep getting told by many what we should do. In the long run, we are going to follow the advice of Dr. Foley. Aaron is going to keep doing a mild exercise program and change his diet, which means mine too. We are going to start slowly introducing ourselves to a more Mediterranean diet. We feel like this will be a good starting place for our family and then we will see where we go from there.

http://www.mayoclinic.com/health/mediterranean-diet/CL00011


Well if you really read this whole thing, I am impressed. This was quite the novel. It feels good though to get my thoughts out and to not have to retell the details over and over. Not that we mind talking to people about this, it is just easier to talk to people about it after they know more themselves.

We found out today that Saturday Aaron will have his second MRI and blood work. We are really hoping and praying they don't find any scarring or lesions on his spinal cord. We will keep you posted once we know more.

loves! from the Meacham's

A Miracle!!!

Today was a roller coaster of emotions. So much has happened in such a short amount of time. But, amongst the craziness, we had a miracle. I truly believe this miracle came from the many prayers given, from those who have been fasting for us and the special help of an amazing doctor. Thank you! The Lord heard those voices that spoke in our behalf. We truly feel so blessed this evening.

This morning I woke up with a lot of Anxiety. Today was the day I was suppose to call the Specialist's office back to see if I could find a way to get Aaron in sooner than August. I was scared that we wouldn't get in, that would have already filled their August slots and that we'd be waiting months before we got the help we were seeking. I of course had a very busy morning with other responsibilities so I didn't get to the phone until noon. Luckily, my sweet friend took Emmy for me for the afternoon so I could call and get things sorted out. I called as soon as I got the chance. But, stupid me didn't think that calling a Doctors office at noon is not a good time. They of course were out of the office until 1:30 for lunch. The next hour and half were awful. I kept thinking of what I could say to convince them that we needed to get in ASAP. Finally, at 1:30 I was able to get a hold of the specialists secretary. They were very nice, but gave me no hope. They pretty much told me that there was no way we were getting in earlier. She did say that if I had my referring doctor call and set the appointment up then they would maybe be able to get me in. I told her that he had already done that. She checked for Aaron's name and said it hadn't been done. I asked her if I should just make an appointment for and she said it wouldn't be until September now! My heart sank. She said to have me call the referring Doctor's office again and see if he could try again. If not, then call back and she'd set up the September appointment. After the conversation was over, an overwhelming sadness it me like a ton of bricks. I got on the computer and emailed the ER doctor that had referred us to the Specialist in the beginning. I felt so bad bugging him yet again. BUT, he was really our only hope at this point. I then sat down and between tears and prayers told the Lord that I had done all I could do, and the rest was in his hands. I had to come to terms that maybe the Lord wanted us to do something else, go a different direction or to be patient and wait. I decided I would wait one day to hear back from either the ER doctor or the specialist and if I didn't I would go ahead and make Aaron's appointment in September and we'd keep seeing the Nuerologist until then.

The Miracle:
A few hours later I was driving down to Provo to meet Aaron for a baby doctor appointment. I got a phone call from Aaron. He said, "Thank you for whatever you have done!" I was like what? What happened? Aaron replied that the specialists office had called and informed him that Dr. Foley had rearranged his schedule to make a slot for Aaron to get in TOMORROW! I about died when I heard. I burst into to tears, with every type of emotion bursting through. It was a miracle! Truly a miracle!

Once Aaron and I were alone and could talk he looked at me and said, this whole experience, the fact I went to the Riverton ER, we had Dr. Hasleton there, who just happened to know the best MS doctor in the west, and became our advocate, pretty much getting us into one of the hardest doctors to get into... is a complete miracle... no really... a sign that the Lord's hand is in this all.

Today a friend sent us this quote which was truly so fitting for the day:

When through the deep waters I call thee to go,

The rivers of woe shall not thee overflow;
For I will be with thee, thy troubles to bless,
And sanctify to thee thy deepest distress

As our day went on, many other things came about that has made me reflect how true it is that the Lord is with us through it all.

We did have some other tough news about some dear friends of ours. I sit here tonight and think, we truly can't predict what the future will hold, what our lot in life will be or how we will face the trials ahead. But, we can rely on the fact that they Lord will not leave us alone and that with his strength we can overcome all things. We also saw today the ultrasound of our soon to be baby. It was also an assurance to us both that this little life is another miracle in our lives. That it will truly be another testimony to us that the Lord loves us and knows us each.

We will keep you updated about how things go tomorrow. Loves to you all who care so much!
The Meacham's

July 6, 2013

I've had a few people ask for an update on things... 

I wish I had more to tell, but Dr. Foley, the specialist we are waiting to see is out of town until July 9. So we are just waiting for him to get back and see what he says about seeing Aaron earlier than what they are telling us. We've been told a few times that it is important we get him in ASAP. We are still hoping, waiting and praying it will be soon. 

I have been doing a lot of reading on MS. We've heard a ton of stories now of people with MS. We are trying to feel hopeful and are really looking forward to a talk with a specialist, someone who really knows the disease, and knows what Aaron can be doing other than medications like, diet, exercise, rest, and stress management.

How is Aaron doing? He is doing much better. His speech is pretty much back to normal and his face isn't sagging anymore. He is still pretty exhausted. Most people look at him and tell me he looks tired. They are right, he is. But, he is trying very hard to stay positive, get back to his somewhat normal routine and try to stay focused on his family, calling, work and schooling. I know that he would love to be back to 100%, but we are coming to grips that this may not happen for a little while.

Thanks everyone for your love, support, text, phone calls, and prayers. We've truly learned why family and friends are so important while we are here on our earthly journey. We are becoming so much more aware of the struggles that others face and are in awe at the faith, fortitude and strength they have. It is such and example and help to us. We hope to become like many of you. We are now, more than ever so grateful for our belief and hope through the Atonement of Jesus Christ. We know that He lives, that He loves us and is our healer and strength. 

May God bless you all. 

Love, 

The Meacham's

Thinking

 I can’t sleep again, for some reason tonight, everything keeps going over and over in my mind. Today was a rough day for me. The girls were so tired and have been acting up, I wasn't feeling well either, and Aaron had a longer day. He said a comment tonight before bed that has been playing over and over in my mind. He said, "We've tried to be normal, and things have suddenly started to be a dream, but then the reminder comes that this is a forever thing, and isn't going away." It through me for a loop, and I realized the past few days I have really just tried to pretend this isn't real. I've stayed busy and haven't thought much about the whole picture of it. But, then at moments, some type of reminder of the whole horror story comes flooding back to memory. I know we will find a "new" normal as everyone tells us we will. But, this waiting game, and unknown is just so hard. 

Aaron attempted work today. He got up and headed out the door. He worked hard all morning. But, by the afternoon he was exhausted. His sweet boss, could tell, and ordered him home. I know how tired he was, because he actually did come home and then slept for an hour. If you know Aaron, that never happens! After he felt a little better, but was still ready for bed early. He is going to try again tomorrow. But, luckily will have the 4th off and then Friday he is going to take off. We've had to make some changes to our Holiday celebrations, which is fine. I just think Aaron feels so bad about it. But, we have to just realize that is going to be part of life too. There will be limitations to things, and that is okay. I just hate that Aaron feels bad about it. 

Anyways, this is really just therapeutic for me to write. I hope I am not too open or sharing things that are too personal, I just feel that this is good for us to share. Goodnight

1 week

July 1, 2013

Today marks one week since Aaron's diagnosis. It is amazing how much change can happen in that time in a person's life. Change physically, spiritually, and emotionally. We feel life has taken on a new meaning and perspective. Which I have to say is a good thing... in the way it has refocused us and helped to start looking at things in a better light. I've had 3 other times in life where I've had a true refocus and change in my life. The first was when I was called to be a missionary for The Church of Jesus Christ of Latter Day Saints. How could that not be a complete change and refocus? Suddenly your life is centered on serving, teaching and loving others. You are striving everyday to serve the Lord and you have to completely forget yourself. That was a great time in life. The second time of big change came when I met and married my sweetheart Aaron. I realized what an amazing person he was and I desired to be a good person like him and for him. The third time comes with a quick story. When I was about 5 months pregnant with our first child, Aaron and I landed ourselves in the instacare. We were moving some furniture onto a trailer, the trailer slipped and it cut Aaron's ankle really bad. While the Doctor was sewing us up, he was teasing Aaron how in a few months he'd be switching places with me. He'd be the one holding my hand, while I was experiencing the pain. He then said a statement that has stuck with Aaron and I ever sense. He said something like this, "Once you have that baby, your view of the world will change. You will look at everything so differently. You won't be able to watch T.V. or see a billboard sign the same. Suddenly, you will be a changed person, one who protects, guides and loves more than you'd ever imagined you would." He was right, that Doctor. Our world did change completely when our children were born. The music, movies, things we said and our actions. These little kiddos changed us, made us want to be the best we could be and to give them the best world possible. Well, Aaron and I have discussed how this week have been one of those poignant moments where the way we look at life, once again has changed completely. Suddenly the things that were a huge concern a few weeks ago have hardly any significance... suddenly relationships are so much more important, the gospel and our purpose here has even a deeper meaning and my focus of my daily life has changed. I'm not trying to say we are these amazing people and that we've got it all figured out, we've just learned so much and have such a different view on life. I find it to be another little tender mercy of our Heavenly Father. I look at it as a blessing admist the trial.

Today, I just want to focus on the positive for a minute. The good that has come of this.

1. Aaron has been super busy before all of this. Since he's been sick, he has been able to stay home for a whole week! Though we haven't been out playing, the time spent together has been so good for our little family. The girls cling to him non-stop and I've had the chance to really grow so much closer to him, which leads me to the second...

2. Aaron and I have grown closer by leaps and bounds. Our communication has opened up so much more, we've discussed topics we've never had the courage to discuss and we've shared fears, hopes and dreams that we've never dared to believe.

3. Our study of the gospel has changed. Suddenly, we have a new focus and reason to study. It has pushed at us to open our eyes to new things and thoughts.

4. We've realized that we have amazing friends and family. We both HATE asking others to do things for us, we don't like attention or to have to ask for help. Boy, did we learn that sometimes in life it is okay to have to lean on others. This week has showed me why serving others is vital. Everyone has those moments in life when they can't do it all on their own. Our goal is to be better about helping others and hopefully showing others the love we have felt this week.

5. We have a new reason to take life a little more serious when it comes to our health. It is a perfect time for us to find a new balance and why of life.

There are so many other good that we've picked up on. Though this is only the beginning of a long journey ahead, it is also a good time to realize that staying positive and focused on the good can help us find greater peace and hope in our lives.

Aaron Update:
Aaron is doing good today. His speech is almost back to normal!!! He went to church yesterday and was able to do his calling. I think it was great for him to get his mind off of things and just stay busy. He is going to go to work tomorrow. I am a little nervous about it, mainly because he has been so tired and also because stress seems to worsen his condition. But, I know it will be good for him to get out, get his mind off of things and to do what he loves to do. We are still waiting on what's next.

Thanks again for caring enough to read my long ramblings.
With love,
The Meacham's

Waiting Game

Okay, I did it, you will be proud if you know me well... I finally looked up MS and read all about it. I have been waking up early for some reason every morning and if I make any big moves it wakes Aaron up. So I've been trying to stay still in bed and just do things from there, so I don't wake him. He is really tired right now. I am pretty sure it is a mix of many things, but mainly just exhaustion from our long week. They do say exhaustion is a symptom of MS, and that he needs to take it easy. That may be a hard one for him to learn to do. Anyways, since I was stuck in bed, I finally looked up the MS society website and dove into the literature. Some of it was comforting, some of it was a little scary and most of it was informative. I really should have looked at it all before we saw the Neurologist. All of the tests he gave, blood work and even brain scan he showed makes so much more sense. I'll try to explain what I learned in a minute.

But, it gave me some direction of what we need to know next. There are 4 types of MS you can have. I think of them more as stages, because you can transition to a new stage if you aren't taking care of MS and it starts to progress more. I may be wrong, but that is what I understood. Here is a summary of the 4 stages:

• Relapsing-Remitting MS
  People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.
• Primary-Progressive MS
  This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. Approximately 10% of people are diagnosed with primary-progressive MS.
• Secondary-Progressive MS 
  Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition.
• Progressive-Relapsing MS
  In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.

As you see above our hope is that he has RRMS, Relapsing Remitting MS. Which means it is totally manageable and easy to live with. They say most of these MS patients live just as long as most others and are pretty healthy. They obviously need to take care of themselves with medication, good healthy diet and other things, but they live normally!!! The other ones, are  little different. I hope to never even have to bring them up. We are hoping and praying now that we find him to be RRMS.

My fears? Well, here it goes... As I studied it talked about how hard it is to diagnosis MS. They have to look at many things, brain scans, blood work, symptoms and how many re-occurances. What that means is some people have scars on their brain, especially older people. So just looking at Brain MRI's don't usually tell you that some one has MS. It can be other diseases or due to old age. But, when someone young like Aaron comes in and their scan shows the scars and shows that some are not recent and some are, it shows re-occurances, which means, it comes and goes and has happened times before. Which is a huge indicator of MS. Most times that is hard to see at first in newly diagnosed MS patients, because they usually catch it on the first occurance, thus they don't have evidence yet of re-occurances. So then they have to rely on ruling out all other diseases through blood work, more scans, symptom watch and other things. But, they all knew pretty fast on Aaron. That could definitely be a blessing in the fact that we can start treatments and not go through all the waiting. But, it also means it has been around for awhile and we could have been treating it sooner. They still took his blood this week to double check it isn't something else. But, the neurologist showed us the different ages of scars and proved he has had more than 1 episode. Anyways, it is making a lot more sense now. Why they do the tests they do, what he was talking about with the new and old scarring and why they are pretty sure he has MS.

What next? We are in a waiting game. As I said in the post before, they told me they could not see Aaron until mid August with the specialist. We could go back and see a Neurologist, but Aaron and I feel strongly to get the results and have the care he really needs we need to get in with this specialist. I emailed the ER doctor we had this week on Friday afternoon after I got the run around from the specialist offices secretary. It old him of fears and worries about waiting and asked his advice. He almost instantly emailed back. He told us to not worry. The specialist Dr. Foley is out of town, but he would be in contact as soon as he could and would email and then talk to him personally. That brought us a lot of relief. We are lucky to know a few other Doctors/Radiologists who also offered to help get us in faster. So we have a huge support system, but it is still a waiting game.

In the mean time, we are trying to just wait, live as normal as we can and keep Aaron healthy. I am making him sleep more, eat healthier and do less. That is very hard if you know Aaron. But, he isn't fighting me as much, since I think he realizes he needs it and it helps. His speech is getting much better, his face isn't sagging as much. I have noticed he is getting fatigued easier, and is fighting off some emotions that are hard to deal with. These are both huge symptoms and we are hoping he can swing back to him old self eventually.

What can you do? (I keep getting asked that.) Pray, pray for Aaron. Pray he can get stronger, happier and that we can get in to this Doctor ASAP. My cousin a Radiologist said we need to get in soon, so pray he does. Pray we can find a medication that will work well with him and his life. Most are injections and the symptoms are hard to deal with. So let's hope that we can get him something he can take orally, that won't make him sick! Pray that he has the RRMS and that it isn't the progressive kind. Other than that, we really are doing better. Things have sunk in, we are ready to face and fight these horrible disease!

Thanks to all who have cared and supported us. We feel so loved and blessed.

Day 4 and 5

Overwhelmed!

Today Thursday, (well really yesterday, since I am writing this a day late)... was one of the most overwhelming, emotional, and long days of my entire life! Today, Friday, has been better and we are feeling much more upbeat. I guess it is good I waited a day to write this post! Anyways, here is how our past two days have gone...

Thursday (Day 4)

The morning was busy getting the girls to swimming and trying to get a few other errands done. Once we got everything done, we took the girls over to stay with Papa Hammond. He was so sweet to take them for the entire day for us!!! Poor guy, I don't know if he knew what he was getting himself into. He was so sweet about it though and we really appreciated it.

Aaron and I then headed up to SLC to do a bunch of things. We started off at the Uof U. Aaron scheduled an appointment with his committee chair. When we got there, Aaron relayed the news to her and then we discussed some options. She was so upbeat and positive. She told us some good news about taking time off, changing graduation, and what direction he can go if he needs more time. (Which I don't think he will, but we wanted to know if there were those options) Then she told us about this cool program the UofU is part of with South Korea. They are going to be part of a University that brings professors over there and here, where they teach classes here or there and pretty much put the U as part of a Korean campus. She mentioned Aaron's Korean speaking skills and how that would be very valuable in the future for the PhD program he is in. I think it was comforting for him to see that despite him just telling her he was diagnosed with MS, it didn't even make her think twice that he couldn't be part of and maybe be employed with this new program. It is one step closer for him to see that disease will not define him and his capabilities to be successful!

After the meeting we met up shortly with an old friend. Then it was off to get a quick lunch. After lunch we headed to the Thesis office. All I can say is that I never want to have to write a dissertation. I couldn't believe the silly requirements and hoops you have to jump through! Luckily Aaron is a fantastic writer and hoop jumper... j/k!

After we then headed to DMBA our insurance place to seek some advice on our health insurance plan and how to make sure everything is covered. It was a good meeting and we feel extremely blessed that we have the insurance that we do, another little tender mercy in our lives.

Then it was off to the Neurologist. As we arrived to parking lot we stopped the car and said a little pray. Our hope was that we'd get some answers and feel like we'd know what the next step was. We were anxious and anticipating a great doctor full of kind words and wisdom to help us feel at peace. Little did we know what was to come. In came the doctor. I instantly sensed something strange. He sat down, pulled his hand out with out making eye contact and shook our hands. Then he pulled out a pen and asked what was going on. He took lots of notes, asked a few questions, rolled his eyes at me (I was asking a ton of questions, I know I was probably bugging him, but hey I am the freaked out prego wife) Anyways, he then said okay, and gave Aaron of little reflex tests. He didn't say anything the whole time, except the instructions of what he wanted Aaron to do. Then he jotted a few notes. After he Left to get some things. When he came back in we discussed his symptoms some more. Then he finally looked up at us and said let me show you Aaron's brain. 

He then pulled up the CT scan. There it was the scariest and most horrific images of my life. My sweetheart, my best friend, my world and his stupid MS scars... everywhere! My heart sank. He showed us which ones were recent within the past month, which ones were active and then which ones have been there for awhile. I can't say much more, I don't know much about the disease, but it was really hard to see. We noticed there may be some on his spinal cord too. We were told they need to do more scans on his spinal cord to know for sure. The Doctor so kindly informed me that really it didn't matter whether he did or didn't because he had MS and we don't need to know every place it is. I just shut my mouth after that. 

Next he pulled out a flip chart. Then he said this tells you all about MS I can go through it, but really you look like you are done. My thought was... "Really? You think we are done? Because honestly, we had just started and have no answers!" But, he made it pretty clear he wasn't there to read through a flip chart with us. So we said he was fine. I then finally said, "Ok, he has MS, now what?" That jump started him to his opinions about medication. He then said for us to look them over and when we came back he'd prescribe something. He went over them briefly. I looked at him and was, "What one would you use?" I am sure by now he was about ready to kill me, but these were things we needed to know. We were lost, there were 5 medication listed, all with horrible symptoms and most were a daily injections! He suggested a few, but asked us to look them over some more. After I pulled out my list of questions and just started to fire. I was done with caring what he thought, I was there to get answers. Unfortunately, most weren't answers how I wanted. He then looked at us and said. Why don't you come back in two weeks. We will get some blood work, take another MRI of Aaron's neck and then you think about meds. 

That was it. He was done and it was time for us to go. He got us a pamphlet and then gave us instructions to meet his nurse up front to fill out a form and then head down to level 2 for blood work. I think Aaron was so overwhelmed he missed the comment about blood work and lever 2. So he tried to tell back our instructions to the Doctor, asking if the nurse was taking us to get the lab stuff. The doctor looked at us and said very sarcastically "You can find your own way to level 2 on your own can't you?" I just looked at him and said, "Yes, sorry he was just confused what you had said, we can find level 2 on our own." We then left the room. 

As Aaron was trying to make his next appointment, I could just tell he was about ready to explode with emotions. This had not been what we wanted. As we headed down to the lab, Aaron realized that they were going to take his blood right then. I think he was so ready to leave the building, that he just began to cry... I only tell you this, to understand the anguish, confusion and heart ache we felt at that very moment. He quickly pulled himself together as I tried to find ways to make him laugh. Then they sucked him of his blood filling 6 tubes. Poor guy really just hates needles. Thank goodness the nurses were very kind. Finally, we could leave! We got in the car and both sank into our seats. We looked at each other and said "That was not what we had hoped." It was definitely time for a second opinion, we needed to get into the Specialist as soon as possible. We knew we would have to call first thing in the morning.

We had to leave immediately though because we had 1 more appointment with Aaron's colleague who had invited us over to speak to his wife who has MS. As soon as they opened the door, hugs were given, Peter (Aaron's co-worker) looked at me and said "How are you?" Most the time, which I am glad, it is asked how Aaron is, which is to be expected... but to have a spouse of someone with MS ask me another spouse who just learned their love of their life has MS, just made me burst. I cried and unfortunately cried some more. After, we ate and talked. Mainly, his wife talked. We listened and were in awe with her faith and her experience. It was wonderful, but overwhelming too. We both wanted so dearly to be like her, to be as faithful and optimistic, but we aren't, we are so far away from it. We had to keep reminding ourselves she was 17 years ahead of us in the disease. It actually made me think about my own experience...

Some of you may know when I was just 18 years old I was diagnosed with a disease called Nuero Cadio Syncope. It is somewhat related to the disease called Potts. Anyways, it was a very scary time in my life for my parents and I. The disease is pretty rare and not much research has been done on it. We went through a lot of tests, drugs, loops and circles. They told me all the limits I needed to put on my life, the diet, and the scary news of what my future might hold. A few examples were: I would never be able to bear children... and here I am on child #3, they said, I had to stop competing in my sports and do only mild exercise... I've now run 6 half marathons, 2 triatholons, 1 1/2 full marathons, 5 10K's and 10 or more 5k's at a very competitive speed. They said that I couldn't be in high altitudes or I'd get really sick... yet I was a ski instructor for 3 years and have hiked plenty of mtns. , andthey said  I would probably need a pace maker in my 30's... it's been almost 3 years into my 30's and my heart is beating just fine on its own! Anyways, I look back to the beginning of it all and remember the fear we had of the unknown. I now look at myself and I realize I rarely think about my disease, except at the moments each day where I experience some of the symptoms or when it flares up in me for a few weeks. Other than that, as mentioned above I have overcome most the things they said I never could do and am doing great. I know that my health problems don't compare to the disease that Aaron has. But, I can see how optimism, life, and things can get back to some type of normal, just as it had for this sweet women. A little hope sank in at that time for me. 

But, the days events had been so exhausting, I think that I couldn't think anymore. Home, that is all we wanted. We headed to my parents, to find some very happy girls. Thank goodness for our parents who have been here for us this week! How did we get so blessed, another tender mercy for sure! Then it was home and bed. I actually slept. I think every part of Aaron and I were exhausted. We are realizing quickly that this is completely out of our hands and that we are definitely going to have to rely on the Lord completely.

Today... Friday, June 28 (Day 5)

Peace after the storm. We both work up tired, but more rested than all week. We dressed and once again headed out the door. Back to my parents house we drove. While driving I called the specialist office Dr. Foley to set up an appointment. We were done with the doctor from the day before and were ready to see someone who only worked with MS patients. Of course, just as the ER doctor had predicted, they gave us the run around and said they could not get us in until AUGUST! I was like, no way! I told them about the ER doctor emailing the MS specialist and that he said they would say this and to not let this happen. I apologized for being pushy, but felt that we needed to get ins as soon as we could. She then was really nice and was like... "Ok, I will talk to the Dr. when he gets home from his trip and I will call you on July 9 and let you know what he says. That was all I could do. I hung up and once again my heart sank. We reached my parents house and as soon as we exited the car, my parents sweet neighbor Rachel came racing over. (She just so happens to be my OBGYN's wife) She hugged us and asked if we had learned anything. We told her not really and she asked what next. I then started to cry, because of my frustration with the Doctors office and the appointment. She was sweet, offered some words of advice. I think we both were just back down to the bottom again. Luckily, we were headed to the temple. Once there, obviously we won't share too much of our experiences, but... we both had some clarity, some eye openers and some tears. I learned a little about my role as his wife and he learned a little about his role as a Child of God. We sat a long time in the Celestial room. We cried, hugged and sat quietly. Once out I felt a little better and little more optimistic. Though no answers came, peace did. Though I don't know what is going to happen, peace still was there. The thoughts of an address Aaron shared with me the day before which were given by Elder Bednar in an address he made to students graduating from BYU Hawaii came to mind:

As we consider so many of the things that are occurring all around us today, we could perhaps find ample reasons to be afraid, to hesitate, and to wonder if things in our lives can indeed turn out the way we have long hoped they would turn out.

As you now prepare to go forth from BYU-Hawaii to work and to serve and to learn, some of you may question or lack confidence in your own ability to succeed temporally and spiritually.  Or perhaps you wonder if the Lord’s promises of support and —which you readily recognize and acknowledge in the lives of so many other people—will likewise be evident in your life.  You may be uncertain about pursuing an opportunity because you cannot foresee all of the details about how things will work out, and thus you are reticent to start and take the first steps on that path.  Or you may be so concerned about making a mistake that you fail to act in faith and press forward, and you thereby increase the likelihood of the very failure you fear.    

To not take counsel from our fears simply means that we do not permit fear and uncertainty to determine our course in life, to affect negatively our attitudes and behavior, to influence improperly our important decisions, or to divert or distract us from all in this world that is virtuous, lovely, or of good report.  To not take counsel from our fears means that faith in the Lord Jesus Christ overrules our fears and that we press forward with a steadfastness in Him.  To not take counsel from our fears means that we trust in God’s guidance, assurance, and timing in our lives.  I promise each of us can and will be blessed with direction, protection, and lasting joy as we learn to not take counsel from our fears.

As we exercise faith in Christ and trust in His promises, we can walk into the dark with the absolute assurance that our pathway will be illuminated—at least far enough to take the next step—and then the next step—and the next step.

I don't know what will happen, but I can trust with the Lord, we can keep walking forward and know that as we do move forward, strength, understanding and hope will come. We do have hard things ahead. I know that and recognize that, but we can do this and we will make it through somehow.

The rest of the day was a little crazy... phone calls one after another, visitors, more phone calls, screaming and tired little kids and many other things to get done and caught up. It was a rough week for us all. But we hope and pray that next week will bring more peace, clarity and hope.