Update

Good news and Bad news. I guess thats how life goes, right?

Let's start with the Good news. Aaron had his MRI two weeks ago and the results showed no active lesions or new lesions on his brain! So maybe, just maybe the medicine is finally kicking in and doing its job!

Now, the bad news. Aaron received a call from the Doctor's office 3 weeks ago with the news that his JCV levels are getting to high. I guess you can't have your blood levels any higher than 1.5 and he went from a .80 to a 1.4 in a short amount of time. He is suppose to go in Friday and have his blood work done again to see, if this increase has continued. If it has. Then sadly, they will pull him from the drug that he is on now. The other bad news is, there really isn't much else out there that will help Aaron's MS. The stuff he is on, is strongest and best. So we can only hope that his blood levels have dropped and that he can continue on this drug until other options are available. We hear roomer that a new Drug should be out by the Fall of 2016. So either way, fingers crossed he can start trying that drug then, if we can make insurance and others things work out. 

It just doesn't end. Sometimes I think it will, but lately I feel like it just doesn't end. I hate people asking me "how is Aaron" I never know how to answer. Most the time, I say good. Because he is good, he is a positive, hard working and pretty happy person. But, he has a horrible sickness, that affects him daily. He's had some really good positive days lately, but he has really rough days too. I hate bogging people down with bad news too. So do I just fib? I mean come on, most people really don't want to hear it anyway, right? It's a hard spot sometimes to be. 

On a more happier note though. I have a fun announcement. My brother Jon and I training and  raising money for National MS Society by running the Boston 2016 Marathon! How cool is that? Doing the thing I love most, to help fight the disease that plagues the man I love most. I have a Donation page with our story and why I'm running the race. Check it out:

http://main.nationalmssociety.org/site/TR/Special/MAMGeneralEvents?px=14731319&pg=personal&fr_id=27191

I truly hope that someday, in the very near future we will discover cure. For now, I'm just praying the find more effective and safer medications for MS people to be on. 

Below is a picture of my friends and I running a few Saturdays back. My one friend Cheryl ran a 50K which is 31 miles to raise money for a friend of hers who has MS and is going to try a new stem cell treatment that is still under trial. They think it could actually be a cure to MS. I had to run with her for some of it to support her because of what she was running it for. I only hope that maybe, just maybe this run did raise money toward finding a cure. I hope to do the same with my race in April.

So here's to racing for a cure for MS!

It all starts with a decision to begin. Here was our beginning 

of the run, our starting line...

Becky, Cheryl, Me, and Deb

Its been awhile.

It's been awhile. I haven't update for many reasons, but mainly because life is crazy at our house. With the birth of our baby in Late March, we now have 4 kids under 5, plus I teach preschool and try to keep up with life. 

So here's the latest. We've had a few people ask lately, so I figured I'd write it down for those who may still check this blog.

Aaron's a champ! You'd never know he was sick if you didn't already know. He works hard, and is trying really hard to keep his head in the game. But, unfortunately he doesn't feel like we wish he could. My last blog post in May I talked about the new drug he was starting. He was doing pretty good this summer and we felt a glimmer of hope for a bit that maybe this was the answer to this 2 year journey of finding a medication to slow the progress of his MS. But, we've had some bumps again and wonder if this medication will do what it needs. I can't remember all thats gone on. But really we've had a few times where he felt like he was back to first times he was diagnosed. Numbness, fogginess in his mind, exhaustion and just plain not feeling good. A few weeks ago he went in for a dose of steroids to help the numbness subside. It seemed to do the trick for that. As far as everything else. Its about the same. 

Sleep has become vital, and he is finally allowing himself to sleep in a little longer in the mornings. Our biggest problem is if he gets woken up during the night, then he can't go back to sleep! Which then affects him the next day and starts a domino effect for days after. Sadly, we've again, got 4 kids under 5. It is a rare occasion to not have at least 1 wake us up in the night, if not more. I try to get to the kids before he wakes up, but some nights, I'm so exhausted, I don't hear them first and Aaron gets woken up. I then feel horrible, because then he doesn't get back to sleep. WE are trying some sleep meds, but if he takes them too late in the early morning, he has a hard time getting up. So our hands are tied at this time. I'm tempted to make him sleep in the basement, but he's not quite to the point he will do it yet. Ugh! Tricky stuff. Hopefully soon, the baby will at least sleep through the night and we will have more nights than not, where no one wakes up. 

Diet. WE are struggling with this and direction to go. We know food has a huge impact on him. But, its so hard to know the direction. I'm struggling with prepping, cooking and buying the things that will keep him healthy. I'm feeling so overwhelmed with everything else in my life, that I'm lacking in the supportive cooking wife section. If anyone has suggestions... I'd love to hear them! He needs to do something. We pretty much know what to do, but its the money, time, and energy to get there that makes it hard. 

There are a few other things he is facing right now, that are definitely too private to discuss on the blog. But, every prayer is welcome. 

For the most part. He is a hard working, happy and optimistic person. I feel that we will figure this all out and will find MS to be more of a nuisance than something to fear. I hope at least. For now, we keep testing what works and doesn't and hopefully gain some ground in the future. 

Thanks for reading. 

It begins again...

Monday was the day we went back to the Doctors to meet with him and begin Aaron's new drug. I picked him up about 10 minutes before the appointment and we headed over. Once in the office Aaron had to fill out a sheet that I guess you fill out every time you come to receive the drug. It has questions about your health, how you've felt and any new noticeable symptoms. After waiting for a bit, a nurse came to take Aaron to get his vitals and show him a few things. I was still feeding Easton, so I just stayed in the lobby. When Aaron came out, he looked pretty melancholy. The nurse showed us back to the doctors room. Once there, we had a minute to chat alone. Aaron was pretty emotional and seemed just overwhelmed with everything. I felt awful and wished I knew how to comfort him at that moment. The doctor finally came in and began to look over all his results. Before they administer the drug the first time, they check the risk factors that are involved with the chances of the JCV virus actually causing PML. The doctor started with the blood work. I'm not sure what it was measuring, I think with how active or something with the JCV virus in the blood. People whose blood reads 1.5 or higher, can not receive the drug. Aaron is borderline with a 1.3. So he can still have the drug, but is on the border, of course. We discussed a few things with the doctor and learned some new things. 

1. The other 4 risk factors are as follows: -

-The patients weight needs to be higher than 150. Aaron weighs 155. Time to fatten that boy up! 

-If you are on the drug for longer than 2 years.

-If you have had drugs before that suppressed the immune system, like chemo.

-If you test positive for the JCV virus. Which Aaron does.

3/5 of the risk factors, not what we wanted to hear. I think this is really what hit Aaron so hard.

2. We also learned that this drug is the last resort drug for MS at this time. They usually make patients take several other drugs before they prescribe this drug. Its very aggressive and works good. But with the risks involved, I think they try to see if other drugs are just as effective first. Since Aaron's MS continued to progress with his last drug and that drug being the other most aggressive drug out at this time, they know that putting him on any other drug would be fruitless. So, he was prescribed this drug. There really is no other option. Either he takes the drug or allows his MS to take its course. So we realized that really this is the direction we need to go. The hopes are that the middle or end of next year we will have a new option that is coming out. It is a new aggressive MS drug that we can switch to. Hopefully with less risk factors than the drug Aaron just started to take. 

3. We learned that Aaron has an active lesion at this time. The doctors hope is that this new medicine will get that to calm down and stop any more attacks on his brain. 

4. This drug weakens the immune system. Aaron will be very susceptible to sickness. We must not let him get sick the week before or of when he is to receive his next round of the drug. If he is sick they will not give him the drug until he is better. Because the drug weakens the immune system the virus or whatever is causing him to be sick can get worse. I guess there is a total 6 week window to administer the drug again for it to continue to be effective. After 4 weeks after the drug is given it is still strong in the body, after 5 weeks its still there slightly, but by 6 weeks its gone. So they need to get the drug to the individual before week 6. Anyways, he needs to stay healthy and avoid sick people. Looking at our house, you can only imagine how that will be very hard to avoid. Oh well. Lots of had washing, and hand sanitizer for us. Guess what Aaron's getting for father's day. 

That's all I can remember right now. But we learned a lot and have learned that what we need to do to get this boy healthy once again. 

After meeting with the doctor we headed back to the infusion room. There were 3 rooms. A quiet room, a dark room and the bright room. Luckily, the bright room with lots of windows is where they put us. We sat down and the cute nurses there came and greeted us. They were in love with little Easton. Everyone who saw him were dying. I think it made Aaron proud. We were then asked to see pics of all our kids. One nurse couldn't stop peeking in on Easton. It was cute. They finally got the drug going and we started to chat with the other lady in the room who was there. She was older and told us she had had MS for over 30 years! She looked great. She has had her ups and downs, but said this drug has really helped her. In fact, it helped her get out of the wheelchair. Anyways we talked with her for almost the entire 2 hours. She held Easton while I got Aaron lunch and she really helped Aaron's spirits to improve. Another lady came in at the end. She was upbeat and positive to. They both really shed some good light on this journey we are on. No, it won't be easy, but staying positive and making yourself focus on the good helps. 

So Aaron did really well. He had no allergic reactions and has been doing good this week so far. He goes back in a month. I'll go with him again and just make sure all goes well. 

We will keep you posted on how things go. We are hoping and praying that all will go well from here on out. Here's to a new beginning that will end much better this time! 

"Disastrous"

When you here those words from your doctor, you think... hmmmm this is not good.

We went in for our MRI follow up appointment this week. We've been anxious since the Doctors office called us back after the MRI suggestion Aaron get more solemedrol treatments in and have a visit with the doctor soon.

Back to square 1is a good way to sum up all that we discovered. The MRI showed a very large lesion on the brain and then another at different spot. The many exaberations that Aaron's has had since January are the evidence of whats been going on in his head. Not good. Proving the disease has found a way past the medication and is not working. In the words of his Doctor "Disastrous!" The obviously it didn't do as we had hoped and had quite the opposite effect.

So what does this all mean? A new start and search for help for Aaron.

The Doctor suggested, well pretty much said our next step is a drug called Tysabri. Very effective and has been around for about 10 years. It is a once a month infusion and doesn't have too many side effects. The problem, as we are finding all drugs have, is that it is connected to a rare brain infection that can kill you. Ya, I shifted in my seat when I heard that one. It's rare, but not rare enough that  they watch you like a hawk to make sure you show no signs of this brain virus. Not what I wanted to hear. So what is this virus?

There is a virus called the JCV virus, named after a man who died from it. Nice. Anyways, we are all exposed to it and probably half the population has it. It is food bourne. It sits and hangs out in our kidneys. It does us no harm, until we have a weakened immune system. So people who have chemo, and other disease where the medication weakens that immune system increase their chances for problems. The JCV virus can end up in an Tysabri patients brain and start doing its damage when the immune system is weak. Tysabri is a drug that weakens the immune system, it does it so well that it allows for the MS to not hurt the brain, but increases the chance of the JCV virus to do its damage. The JCV virus does have to mutate and travel to the brain first, for it to cause brain damage. But if it does, and once this virus is in the brain it then causes the brain infection PML. This is not good. It has no cure and about 25% of those who have it die. Those who don't are disabled and very sick. There is not cure to PML.

So with this new knowledge I started to ask a few questions. What types of people have generally got PML. The doctor said it was found most often in the european nations. Why? Because people there were skinny. We both looked at Aaron. My thought... I need to fatten that boy up. We went ahead and looked at his blood tests and guess what!? Aaron does have the virus, like half the population, but he does have it hanging out somewhere in him. Ready to mutate and travel to his brain. I know I'm being silly, but you sit and listen to a doctor say that a drug he is putting your sweetheart on is suppose to help one thing, but has a risk of killing him! You'd be a little nervous too.

Anyways, he should be fine and we are going to go ahead and start the drug here in the next few weeks once we get approved by insurance and hopefully get on some financial help plans to pay for it. The drug itself $5500 a month! Of course we won't pay that, but it still would be killer if we didn't get financial help. SO fingers crossed!!!

I did ask the Doctor why the first drug Tecfidera didn't work. I asked him if Aaron maybe has a more aggressive MS. His response was of course not what we wanted to hear. It looks as though at this point it is a lot more aggressive than we thought. Which is more typical in a male with MS. More women have MS, but men who have it, see a more aggressive side to it, since they don't have the hormones like women. But, we can treat it he thinks with these typical medications. If not, then we will jump on something more intense. We pray we never get there. It didn't sound pleasant.

It was hard to sit there holding our 2 week old baby and listening to the doctor say, we obvisouly need to get you better. You've go this young family and a whole future ahead. Why was that hard to hear? Because for a year and half I thought we were already getting him better. Here we sit and he just told us that the medication he was just on was DISASTROUS and not doing what we had hoped.

So onto a new chapter. There is great hope that this drug will do what we need. The first 6 months are vital in watching how Aaron responds to the drug and treatment style. We have to watch for allergic reactions, PML signs and side effects. I will go to his first treatment, so that I can get educated on what to look for and how to keep him safe.

We just hope and pray this is what we are looking for. That Aaron will be healthy finally and we can move away from the fear of MS taking over our lives. As his doctor said we want to make MS not a disease that will disable, but just a pain in the butt every once in awhile. SO here's to a pain in the butt.

MS Awareness Week

This is National MS awareness week. Not that most people even are aware of that or know what MS is. But for those of us effected by it, I suppose it has a lot of meaning in it. I decided I would take this week to become better acquainted with Aaron's disease. Its been on my mind a lot lately, mainly due to his poor health and the new challenges ahead. But also, because I'm frustrated that Im not doing more to help Aaron's health to be better.

It can be overwhelming at times, to feel a responsibility to help your husband have good healthy habits and cook good foods for him. I feel we are generally very healthy people and have always been. But, we've really cut down and a lot out these past few years. Still I feel the pressure that it isn't enough. I've had two very close friends tell me different paths we should take as far as food goes. One pretty much told me a cure would come if we stopped having a certain type of food in his diet, another said that if we cut everything out, with exception to those things that naturally come from the earth that we would see him obliviate all bad symptoms. Though I do not disagree that what we eat truly impacts our quality of life, I'm frustrated that we continued to get bombarded by people telling us what to do, because they've witnessed a situation where their food choice changed the health of someone.

In one instance a friend said because of their family members diet change, they were "cured" of an undiagnosed MS. They had some symptoms, but it was obvious to me that it wasn't MS, but in her mind that was the answer. It kind of came off as, Hey! if Aaron would only get healthy and eat right, everything would be ok. You guys wouldn't have this disease anymore. Its pretty much your fault where he is and if you don't change, then its your fault where he is headed. I'm not sure if thats ever how anyone would ever put it or say it, but it feels this way. Of course, if I knew there was a simple answer like eliminating a certain food that would cure him, we'd do it. But it doesn't, they've proved it in studies and most MS people we talk to are all over the range of diets and lifestyle, yet they all continue on the road with the disease. Yes, again, it can eliminate nasty symptoms and help Aaron healthy to fit the disease more aggressively. But, its not the cure.

So here's Aaron anyways, who is super healthy. Very healthy. In fact I used to tease him that he needed to enjoy life a little more and eat a less healthy things. But, I've started the research. So I can truly understand and feel that what I feed and give my husband isn't truly killing him. He has started to decrease and eliminate most dairy and gluten products from his diet. It hasn't been long enough for us to see any change. As I have read, and the more I read, really what we need to decrease and change is more of the salt intake and processed/fast foods. We really don't eat fake, processed dinners or foods. In fact I live by the rule of shopping the premeter of the store. I do buy crackers, cereal, bread and fruit snacks for the kids, but Aaron rarely eats anything like that, unless its organic type of snack with a few ingredients. We eat out rarely and when we do, we share a meal and keep away from fast food places like Mcdonalds.  We will continue to experiment and find what helps him feel best. Everything that I read takes me back to what his MS doctor said about whole foods, plus high fibrous whole grains, oils, nuts and high in fatty omegas. We are not fish people, but we can give him that through vitamins and other foods. I just need to continue to research and learn more.

Ahhh, my venting session is done. I really want what's best for Aaron and I will truly change or do whatever we need to do. I just wish people around us would stop judging, critizing or telling us what we should do. I wish there was a book that told us exactly what to do. There isn't. MS effects every person differently, everyone is treated differently and each person responds different. So forward we go. I do want to put it out there we don't not want to hear from people what has helped them, we just don't want to be told that if we'd only change this or that he'd be cured. Be sensitive is all. In the end Aaron's a good guy who really takes everything that is said to him lightly. I'm the one who thinks about it too much. AS you can tell.

Anyways, Aaron had a big dose of steroids yesterday. The nurse at the clinic didn't like to hear he had two new lesions. Not a good sign at all. I guess we will know more in April. AS for this week, we are going to continue to learn and read more about it. I want a healthy and happy husband in the future, so I feel what I do and learn now could really help that to happen.

Much Love. Thanks for reading my ventings. Jamie

Next Step

Well we finally got a call back from the Doctor's office. They've bumped Aaron's appointment from the end of May to the beginning of April. Which means we hopefully will get some answers a little bit sooner than we were thinking, which is great news! They also told Aaron to go in and get one more dose of steroids to keep him going until then. We are hoping this will help. Once we know more  we will update the blog. Until then. Prayers we can receive some guidance on the next step, that we can come to understand this illness better and really find a direction in how to make Aaron feel better. We've started eating a lot healthier once again and trying to get Aaron more sleep. It seems to help a little and we hope we can continue.

Thanks for reading and for your concern! It truly means a lot to us. I do want to let you all know that overall, life is good!!! I seem to come off negative in my posts, mainly because its the only time I really talk about all of this or share what's going on with others. But, we are HAPPY. We feel blessed Aaron is as healthy as he is, that he can work and doesn't have any symptoms at the time the prevent him from a regular everyday life.

Results

We got Aaron's MRI results back this week. We were excited at first, because they gave us his spine results first and everything looked awesome. Then we realized we didn't have the brain results and had to wait a few more days. Feeling positive after reading the spine results, we were a little disappointed with the brain. We of course don't know much of the medical jargin, so we don't completely understand everything that was reported.  We will have to wait until we officially meet with his doctor, but we do know that when it says two new areas that have been effected its not good news. We don't know exactly how bad or what damage happened, but we do know that some has happened. So our long streak of healthy hasn't quite continued, and its back to the doctor to figure out what the next step is.

Aaron's felt fairly well up until January. But it seems, since the new year, we've had problem after problem. From headaches, to lack of sleep, to weird rash break outs, to awful red flare ups and lots of numbness. Nothing that limits him luckily from work or most things he is required in his life, but it sure doesn't make easy. He just doesn't feel good most the time, and that is just plain frustrating and hard. Think about the times you have a headache or feel sick. Now think how relieving it is when thats over and you no longer have it and can continue on with life feeling good. Now picture if it never went away and you always live with some kind of pain or problem! That's Aaron. Yet, he really is optimistic and continues on with his life as if nothing is wrong. It just gets a little harder when its more intense like it has been.

We look forward to a visit with the Dr. and hope that we can figure out how to get him back to that healthier stage. Until then, we've decided to make a few changes to diet and lifestyle to hopefully get him feeling a little better. WE notice that certain foods tend to make him feel not 100% which is probably true for every person. But, they tend to have a greater effect on him. We hope this will help with some of the day to day problems he faces.

We will keep you posted on thing when we know more.

MRI

Well, things didn't quite go as we thought with Aaron's last dose of sole medrol. We had hoped it would stop his symptoms and he'd be feeling better by now. But, unfortunately it hasn't. The numbness and pain are still there and have travelled further down into his foot. He is says it isn't too painful, just irritating and frustrating. Aaron called the Dr. office Wednesday to see what this means. They weren't for certain, but are guessing he is having an actual relapse of MS. The only way to know for certain is to have his MRI a little early. If it is an actual relapse, then this might mean a No go on the medication and a start all over of something new. Bummer. Not the news we want to hear. It's frustrating because he had 9 months of really good health. To see that decline and the reality that this disease will truly never go away is hard. But, we can't get down yet. We really just need to see the MRI results and then go from there. Once those are in, I'll hopefully be able to tell you more. WE are glad he's getting the MRI earlier due to insurance and upcoming events in life. I hope it gives us the answers we need too.

Update...

Our hope was that Aaron would continue his long stretch of no relapses in the year of 2015, but sadly at the beginning of Jan. the 9 month stretch ended. Boo!

Aaron began to experience, numbness, and some pain on his left side again, along with sleepless nights and a lot of discomfort. I always feel bad when he gets like this. It must be a real pain and confidence crusher. Of course Aaron pushes through it, doesn't tell anyone and deals with it quietly. He's learned though not to toy with it and as soon as the pain comes, to do something about it. I'm glad he is getting better about doing this. Thus, he went in for infusion treatments the next week and feels like they helped a ton.

I'm grateful there is a fast fix to helping these symptoms. I wish I understood more, if it is helping the problem. At least, he can go back to his same old self after these infusions. We are always grateful that the MS is not manifesting itself in another area. I guess that means bigger troubles if it is. So our hopes are, if the symptoms are back, that at least they stay on the left side.

We did feel it was a tender mercy the flare up came on when it did, since the next week we left for our family vacation. The infusion is like a shield for about 6 weeks. So he had the extra help while we were gone for his immune system and treatment of symptoms. Which was comforting to me, especially since we went to Disneyland where there was just a measles out break. Plus he had to do a lot of physical walking, driving and some sleepless nights.

Aaron's a trooper. We are learning of so many that deal with autoimmune diseases. They are horrible and can be such a set back in life. Yet, so many are persevering through pain and trials and just living life to the best they can despite their physical difficulties. I hate that out of all the autoimmune diseases Aaron has to have the one that attacks the brain! But, I am proud of Aaron and his way of facing this trial in his life. Though it is truly a daily struggle for him, he is pushing forward with such optimism and desire to not let it stop him. There are days when it does, that's got to be frustrating. But he pushes on and is stalwart. I truly look to him as an example. We all face trial, but not letting it stop us is truly an accomplishment.

Hang in there babe! Love ya! Keep up the perseverance and know we are rooting for you!

Catch up!

Wow, I didn't realize how long its been since I last wrote on this blog. I'm sure no one reads it anymore, but its good for me and our memory books.

Aaron's physically felt fairly well since my last post of him graduating and having that stress out of his life. He actually just got his paper completely turned in, accepted and published! We are now finally waiting for the "real" degree to come in the mail.

MS we are learning is a disease of ups and down that can effect you daily. People ask us how he is doing. Which is a hard one to answer. Because, yes, he is doing better than the past. He hasn't been in for steroids in a few months and the meds seem to working for the most part. But, he physically has daily problems,  these come and range in differing symptoms and degrees of pain. He is learning what things effect what and what he can do to minimize things. The hard part is when something new comes up and we aren't sure what is causing it and how to minimize it.  When you look at Aaron you would never know he is sick. He is such an upbeat, positive, loving and kind person. His set backs he deals with quietly and I'm honestly the only person who picks up on these things and I'm sure I even miss some of them at times. Like today, he looked pale, I could tell he was struggling with his speech and feeling tired. He showed me he has been biting his lip consecutively, and has a huge sore on the inside of his mouth. Yet, he pushes through it, tries to fast, does a full day at church and meetings, and worries about others the whole time. I forced him to eat lunch and lay down for a little bit today, but of course that lasted for a few minutes before he had to jump on the busy bandwagon again with life.

I pray that he never has the intense limitations that MS can bring like, a cane, wheelchair or other extremely physical debilitating effects. We feel blessed that we've escaped those thus far. So we will continue to be grateful for that.

We saw his specialist this past week. There's not much to share. We are learning that the MRI is really the only way other than symptoms to track and know how he is doing. We are planning on getting one late March, early April. From there we will decide on the direction we should take him as far as medication and treatments go.

We received good news that most likely the medicine that Aaron's on now, will not effect out new baby that will be born in March. We've been really nervous about it, because there are some drugs out there that can cause big problems in the development of babies. We were never planning on having us get pregnant while on medication, but life has a way of surprising you. We feel at peace about the whole thing now though and are grateful that all looks well with the development of the baby so far.

That's pretty much the summary of everything right now. Hope this helps those who are wondering. We are happy to have a active, happy dad in our lives, despite the hardships. We are grateful he has done so well these past 6 months and hoping it continues.

He did it!

Amongst the craziness of this past year, Aaron was able to graduate today with Honors! He truly is one amazing man. It just proves that despite the trials or hardships we face, with the Lords help we can overcome and accomplish hard things. Though our hardships don't end with a degree or a completion of a phase of life, overcoming them does give us greater strength, fortitude and courage to face the next challenge head on.

Congratulations Dr. Meacham! Thanks for your example to us all!

Update on Aaron's MS

It's been a rough few days in the MS world. It's a funny thing, just as you start to think you've got this disease figured out and that Aaron's feeling better, we take a new turn. I'm starting to realize that its an unpredictable disease and effects everyone very differently. Aaron is a champ tho and is so positive and upbeat. He's facing things head on and trying to just move forward with his life. With that said, it's a draining disease and I can tell it gets him down and mainly just frustrates him. It tends to hold him back at times and I can't imagine how hard that would be.

 Aaron got another MRI and blood work done 2 weeks ago. What an intense, horrible and expensive little pain that is and we have to do yearly or maybe even more. Luckily Aaron's not clasterphobic and handles the machine just fine. If it were me, there would be BIG problems.

We waited a few days and then we were able to get the results of the MRI on a disk. When we pulled everything up, not much made sense to us, other than the fact it mentioned "New Lesion" and "Active Lesions". Yep, my heart sank and I had a moment of anger. My thoughts were "Um, I thought we were on the right track, but I had a feeling it wasn't working... yet, why not!?? Ugh! Always questions, never answers!" I then had to sit back and think, we don't know exactly what this all means, so calm down and be patient. I had my mom who is a nurse look over them. She came to the same conclusion as we did. I was not anticipating the appointment we had in a few days.

A day after we got the results the Doctors office called. It was Sally, one of the PA's we had worked with. She told Aaron that the results showed that he was having an active lesion as we speak and needed to get in to receive more soul medrol. We weren't sure what to do. We were meeting with the specialist on Monday, should we wait until we get further info. or should we just take care of it. I was bugged because it had only been about 8 weeks since his last dose. Shouldn't that have done the trick?  But we both decided it'd be best to go and get it done. Aaron is leaving on a business trip for a few weeks the next week and so we figured we'd better get him better. So Friday and Saturday afternoon's were spent pumping Aaron full of steroids. Hopefully it does the trick!

The rest of the weekend we spent praying and hoping something good would come of this appointment on Monday. On Monday we headed into the Specialists office. Once there, there were two other couples hanging out and chatting. We joined is once there and started a "group therapy" session. No, really it kind of was like that. Everyone was sharing "their" story. It was interesting to hear and see how MS really effects everyone so differently, attacks in such strange ways and is never the same story with anyone. It was nice to talk to others, but hard at the same time. Normal looking people, who you'd look at and think they were perfectly healthy, but inside their own immune system is attacking them. One gal spoke of her frustration about just that. That everyone saw a normal girl, yet, they had no idea the pain and suffering she was experiencing inside. They didn't understand why she was sooooo tired and couldn't accomplish all that others do. She said it's hard as a mom, to have people not understand where she is coming from and why she is the way she is. You can't tell just looking at her. That hit me hard. This must be how Aaron feels. Not only that, but the pressure he must feel with these symptoms and trying to work in a demanding job, keep up in school/church and be this energetic fun father and husband. My heart broke for him. I was a wake up call once again for me. Of how for a minute I could see into Aaron's head and how he must be feeling.

Anyways, after a long wait, we headed back in. The Doctor came in. You knew he was behind. We were his 3:00 appointment and the people there we had been chatting with were his 2 and 2:30 appointments. He was kind, but quick. He confirmed the new lesion, and that things maybe weren't going as smooth as we had hoped. He told us that unfortunately we may have to change medications. We need to watch it a little longer, to know for sure. He said if the flare ups continue, we'd definitely change. If the MS manifest itself in a new form, we will for sure new to change and need a new MRI. If he starts to stabilize and have no problems. Then we can keep at what we are doing. And of course... Time will only tell.

Haven't we already given it enough time? Its been almost a year! More Damage! But, this how this disease works and how the whole medication situation will always be.

We were told some encouraging news that new meds are coming out in 2015. The scary part is will insurances pick them up, will they be something Aaron can tolerate and help him. Who knows. Once again, time will only tell.

We left realizing that this is completely out of our control. We honestly just have to trust completely in the Lord on this one. There isn't much we can do. We can try to take care of Aaron, be healthy, fast, pray and exercise faith, but the rest is up to Him.  

I keep going back to Elder Uctdorf's talk from General Conference this year.

"Everyone’s situation is different, and the details of each life are unique. Nevertheless, I have learned that there is something that would take away the bitterness that may come into our lives. There is one thing we can do to make life sweeter, more joyful, even glorious.

We can be grateful! 

But some might say, “What do I have to be grateful for when my world is falling apart?”

Could I suggest that we see gratitude as a disposition, a way of life that stands independent of our current situation? In other words, I’m suggesting that instead of being thankful for things, we focus on being thankful in our circumstances—whatever they may be."

Grateful in our circumstances. So for me, I'm grateful I have Aaron in my life. No matter what happens, how much life changes or where his health takes us... I'm so glad I have him in my life. I wouldn't change a thing. 7 years ago when I met him, I knew there was something different about him. I knew that the world he started to share with me, was better than I had ever hoped for. I'm grateful that this is the struggle he has. That this is what we are facing. There are other things I'm grateful we don't have to face together. I'm grateful that he has changed me for the better and continues to challenge and help me. I love Aaron. This whole MS thing has opened my eyes to an even better understanding of Love, devotion and hope. I'm grateful for the lessons it is teaching us about the Atonement, our Savior, hope and the idea that this earth life is a trial and test of Faith. He gave us all we have, we owe it all to Him. Circumstances such as these truly have helped us become more grounded and our perspectives are continually changing, and I'm grateful for that.

MS=Meacham Strength

Because of Him...

Because of Him

I know that no matter what our family will be together again!

I know that Aaron and All will be healthy, whole and complete again someday!

That our family is eternal and that we Can live together again.

That I can lay my fears aside and Trust in the Lord's plan for my family and I.

That there isn't an end, a finale or just an earth life.

That death, disease, heartache, pain, suffering, and loneliness can and has been overcome!

Because of Him, I can be and live with hope and peace.

I'm so grateful for my Savior, my Redeemer, my brother and my friend.

Happy Easter from the Meacham's!

A day MS meant something else!

MS= Meacham Strength

A week ago MS meant something very different to us than the typical Mulitple Sclerosis... it meant Meacham Strength.

On April 8, 2014 Aaron stood in front of a room of people and defended his doctoral dissertation. Not only did he pass, but he presented with confidence, humility, ease and eloquence. I might add he looked very handsome too. Anyways, since his diagnosis with MS we wondered if this day would come. Aaron took all of Fall semester off. We focused on him feeling better and getting his life back to a somewhat normal routine. After Christmas Aaron approached me and told me he was going to finish, and he was going to do it by Spring. I was like, OK! So instead of spending New Year's Eve together, Aaron started his semester long goal of working hard on his dissertation. It has been a long few months for us both. Aaron at the height of it got pretty sick and frustrated. I think he almost gave up a few times. But with blessings, prayers, fasting and perseverance on Aaron's side, he plowed through it and finished his presentation hours before his Tuesday night defense.

As I sat and watched Aaron that night I had a wave of emotions.
It started off with my stomach dropping into a pit of nothingness, I was probably as or if not more nervous for him that he was. Once he started, he was so cool, collected and eloquent, I started to feel elated and proud. I also had moments where I felt stupid... I would think, "Wow, Aaron's really, really smart. I feel kind of dumb right now, those last 3 words I don't even know what they mean!" But, honestly I was really just so humbled, happy and so impressed by this man standing in front of me. If you all only knew. If you really knew what I have watched him go through for the past 7 years of studying and even more so the past 9 months since his diagnosis. At that moment Aaron was my hero in so many ways.

After he finished presenting, the questions came. At this point I was nervous again. I wanted Aaron to be all knowing and answer every question exactly the way he was suppose to. But, to my delight, he didn't answer every question with arrogance and exactness, he did it the "Aaron" way, he did it with humility. If he didn't know the answer, he'd admit to it, if he did know the answer, he'd answer it with a quiet, yet strong understanding of what he was saying. I sat back in awe, he really is one of those people who aren't there to be the show off, but to present and share in the knowledge he gained.

Once the questioning was done. I sat back in relief. Aaron entered the committee question answer session and I headed home. I waited anxiously for the phone to read with good news.

On my drive home I thought a lot. I thought a lot about what he overcame that day. Not just the typical fears and hardships a normal person faces with a defense, but also the walls and mtns. he had to climb with MS while doing it.  I remembered 9 months back when you could barely make out what Aaron was saying. His speech was so slurred and his frustration so apparent. We worried the stress of this presentation would cause some of that to come back. But it didn't. I worried he'd lose his train of thought or forget while up there due to the effects of his MS, but he didn't. I worried he'd have a red flushing attack, but he didn't. I then had a huge wave of gratitude, love and peace feel my heart. The Lord had truly blessed, supported and strengthened Aaron that night and these past few months. I also thought of the strength and support of our friends and family.

Suddenly the phone rang and the best feeling of all came. RELIEF! Aaron passed his doctoral dissertation! He was done with his presentation part! Though he still has some writing to do, the hardest and scariest part was over. When I finally saw Aaron a few hours later, my heart skipped a beat. I realized how much I loved that boy and how proud I was to be his wife. He has worked endless hours and sacrificed so much for this point of our lives. He overcame so much to get here. We had so many sleepless and hard nights. Though life will continues, hardships will come, at least this phase of life is finally over.

The day of the defense my family showed Aaron their support by all sending Aaron texts or emails of their support with the blue MS=Meacham Strength bands. Our little family jumped in on the action:

Only Jon...

Here is our humble hero! Love you Aaron!
CONGRATULATIONS!!!

Aaron's good friend and committee member wrote this comment and shared a picture of Aaron on Facebook for all to see. I thought it was so kind I had to share:

My friend, Aaron Meacham, successfully defended his dissertation this evening. Very inspiring guy who has overcome great obstacles to accomplish this all the while staying brilliantly humble and genuine! #truehero #congrats — with Aaron Meacham.

A disguised Tender Mercy?

Finally...Answers!

On Thursday Aaron finally called in to his MS doctor's office and they got him an appointment for Friday at 11:30. I was relieved that he got in and was going to get some help so quickly. Aaron told me he figured it would be a quick visit and nothing more, thus encouraging me not to come with him. I know he really didn't want to have to make my mom watch our kids and he of course didn't want to stress me out by trying to get there in time. But my mom of course offered to take the kids and when she said are you going to the appointment I felt really strongly that I did need to go! I felt a little silly at first that I was going, just because I wondered if it really would be this short appointment where they would say yep, you are sick and you need to get and infusion and then that would be it. I also didn't want to be the annoying wife who is way over protective and buggy every time Aaron went in for a visit. But, I continued to feel really strongly that I needed to go.

Friday morning came and I had a few hiccups in the course of getting the kids to my moms and getting to SLC on time. I almost gave up twice and thought maybe it'd be easier to stay home. (I've been doing that a lot lately, staying home instead of trying to deal with the hassel of dragging the 3 kids somewhere) This time I told myself "No, you are going to go and you are going to make it work. Aaron needs you to be there whether he wants it or not. It's not about you, it's not about the struggle you will experience to get there, it's about you being there for Aaron. So I worked through the kinks and actually made it there in time. of course to get there on time I couldn't feed the baby before getting into the Dr. office. Of course once there our little guy was starving. Now I am not a huge fan of nursing in public. But, what could I do? and of course our little guy was not happy about being covered and how I was holding him. It was a battle. I almost burst into tears right there in the waiting room. Why had I come. Aaron was stressed and I could tell a little embarrassed that here we are in the quiet office with other sick people and we brought a screaming baby! But I again had the feeling that who cares! You need to be there. If these people are bugged by you nursing or the baby crying then so be it. This isn't about you Jamie. Stop making it about you and your comfort. Of course mid feeding the nurse came and escorted us back to a room. Which meant our little guy getting made again. Once in the privacy of our own room I felt a little better. Tman fell asleep and I was able to thankfully focus on the appointment. It ended up being a huge help in the end that I was able to nurse him to sleep. Anyways, in came a cute, young PA named Courtney. I knew I liked her already for 3 reasons: 1. she was about my age and dressed in fun colors 2. When I apologized for nursing in front of her she told me that she thought it was great I was and that I better not worry about others because who cares I've got to get my baby feed (I love advocates for nursing) 3. I could tell she knew her stuff.

The appointment began and Courtney got right to point of the visit. She asked symptoms, checked for new ones and got a brief history. Then the answer to my prayers began, she asked us "Do you have any questions?" Little did she know she opened the flood gate. Little did she know that the 500 questions were dying to get answers too were going to coming pouring out in the next hour. I wonder if she would have asked that question if she knew the 5 minute appointment would change to an almost 90 minute one. Oh well, because it was just what we needed, what I needed and I know what Aaron needed. I don't remember the exact order or the exact answers/questions given. But here is a summary of what I learned and the questions I finally received an answer too:

1. While on the medication will he still have MS attacks or is it not working?
The medication does not cure him of MS. It slows down the process and can put people into a remission. But he can have flare ups and continued symptoms while on the medication, especially when he is in situations or places that cause him to trigger the MS: heat, stress, exhaustion or an infection/sickness of some sort. Is the medication working or not working? We can't really know for sure until we get another MRI and compare it with the previous years MRI. Which means MRI's yearly unless he continues to have a lot of problems then he will have more MRI's. Thus, mostly likely the reason he was having problems at this time was because he is extremely stressed right now and exhausted. This causing him to have a flare up mostly likely in an area he has already had problems with, thus the same symptoms that he had before. They'd be more worried if it were new symptoms that he'd never had before. But, that doesn't mean it isn't new damage or problems. Again, we won't know until the MRI. At least we can probably guess it is just a flare up of old problems due to triggers.

2. I asked about every symptom he has had and where it is coming from...

Eye Headaches: Normal MS symptom. Real issue is if the eye headache continued for a long period of time not going away, or if his vision became blurry. Then it would be a big problem and need to report it. As far as a eye headache here or there, its normal. Could be MS related or just eye strain. We just need to watch it and stay on top of it.

Dizziness: Normal as long as its not effecting daily life. If it does start to effect daily life, then we need to once again report it and come in.

Exhaustion: Something he will always deal with and be susceptible to no matter what stage in life. Sleep is vital to everyone, but especially to someone with MS.

Numbness: That is a definite MS flare up or attack and needs to be reported if it comes, stays or gets worse.

Slurred speech: Another definite MS flare up or attack. Can also be brought on by stressful situations. If it continues though and doesn't go away, then once again needs to be reported and taken care of.

Flushing: Not a symptom of MS but a side effect of medication.

Foggy/loss of concentration: A definite MS symptom and struggle that most MS patients struggle with throughout life not matter if in remission or not. If it gets severe it needs to be reported, but will be a lifelong struggle like the exhaustion.


3. He is still having flushing attacks, is that normal? What can we do about them?
It is normal that he is still having flushing. It's not good if they become so severe they are keeping him from functioning. But if they come on due to a stressful situation or randomly some time after taking a pill, then its normal. There are a few things he can so to ease those flushing situations which is eat foods high in fat or with pectin in it. That supposedly helps the flushing to subside or be less. So Aaron is going to try to eat some different things in the morning for breakfast to see if that helps.

4. What is happening to his brain when he has these flare ups?
So there are attacks and then there are flare ups. Flare ups are caused by outside factors that cause swelling in the brain around the damaged areas. Thus, causing the previous symptoms to come raging back. Attacks are when you immune system are once again attacking your brain, but in a new area. The hope of the medication is to keep the attacking from continuing.

5. Is solu medrol necessary? Can he wait out the flare ups?
Solu medrol goes in an helps decrease the swelling, fight off the immune system and boast the individual. From what I've heard I think that really since a flare up is not an attack on something new, you could wait the symptoms and flare up out, but the the infusion of the solu medrol helps you feel better faster and gives you a boost and protects you up to 6 weeks. Since Aaron is going to be stressed and dealing with a lot the next 6 weeks, we decided that he should definitely get the infusions and not try to wait this flare up out. The danger in waiting it out from what I gather is that we don't know for sure if it is a flare up or an attack. So its best to always at least report the symptoms and discuss with them what they think. Courtney was very encouraging that Aaron get the infusions.

6. Vitamin C... Aaron has been religiously taking vitamin C since he was diagnosed. But, Courtney was the first to open our eyes that really that wasn't the best thing to be doing. I guess when you think about the drug Aaron takes it is used to suppress the immune system to keep it from attacking the brain. Vitamin C is to help boost the immune system. Thus, they are fighting each other. Does that mess the medicine up, who knows exactly. But, he should stay off of it unless he is sick. Then he needs the immune system back up so he can fight the infection before he gets sick and then causes problems to arise because he is sick which isn't good for an MS patient. I don't totally get it, but needless to say, we now know and Aaron is not longer taking his large does of Vitamin C!

7.  Diet... what is really necessary and what is not?
My big question was the diet research. We've been bombareded with people who swear that this one diet solved their problems, while another says, no stop eating this and starting eating that will help. I've been stressing big time of what to feed Aaron and what to limit in his diet. It really has started to cause me anxiety. Courtney bluntly told me how it is. Anyone will feel better when they start eating healthy, anyone! Anyone will feel better when they stop eating processed crap, even the regular normal person. So to say that it cures MS or puts it into remission is a false statement. Now, eating healthy can help any person feel better and especially one who has a autoimmune disorder, but there is balance in all things. She said most people who have an autoimmune disease usually has a gut disorder or something else tied into it. Thus, when they stopped eating gluten or other things, they started to feel much better. But, it didn't cure them or solve the autoimmune disorder, it just helped with the symptoms that the gut problems were causing. So, Courtney advised. Eat a well balanced diet and keeping away from foods that make you feel yucky! She said, if you notice a food makes you sick, then don't eat it. The healthier you eat, the better you will feel. She mentioned that it takes time and it also is a process. To slowly delete foods from the diet one at a time.

8. Can people really get rid of MS doing natural things without the drugs?
Another thing we get told by everyone is how certain natural things work for them or how they aren't doing anything for their MS, that medicine isn't necessary. Ok, again Courtney put it out there in blunt terms. I'm not going to get into the details, but there is not cure yet for MS. There are ideas out there, there are good oils and natural things to help ease symptoms, but there is no cure. The medicine a long with a healthy lifestyle is your best bet in staying healthy.

9. Stress: If we could only delete it from Aaron's life, I think we'd see a lot less symptoms. It's not going to happen, especially with my little Aaron. He's a stress case! So he's got to start finding coping mechanisms that help him relieve or reduce stress. She gave a us a few ideas and a prescription that could help if he is up for it. We will see how that goes.

10. Normal life: Aaron asked about his life, his future. Courtney gave it to us straight this whole time and she didn't hold back on this one either, which is good.

1. Yes, Aaron will be around for a long time. It is not a death sentence and he can live a normal life.
2. He has to take care of himself. He has to report and get the help he needs, and if he does, they can maintain and help him stay healthy. People don't die from MS they die from not taking care of the symptoms and things that MS can create.
3. He is a man, men with MS unfortunately have it worse then women. They do not have the same protection from hormones that women do. Men have to watch themselves and stay on top of things more.
4. Things can and may happen, but the likely hood is decreasing by a lot with the new advances in medication and treatment.

Overall, Courtney bluntly told us how it is. She couldn't stop stressing the fact to Aaron that it was okay to feel overwhelmed and still scared and stressed about the disease. Though everyone else has gone back to normal life, ours will never be the same. It will take a long time to find that new balance and we will always have times when we are scared or fearful. It's only been 9 months, we just had a new baby, Aaron is working full time and doing a dissertation. (He also has a lot of other things in life like a calling in the church and a busy young family) He is going to be stressed and overwhelmed. It will be harder than your average Joe. It was so good for Aaron to hear someone else say it, to say you are doing a lot, I'd be stressed too, you are amazing for hanging in there and plowing forward.

So the appointment ended. Aaron got some helps with sleep, stress and then a time for infusions. We walked out in amazement. I was actually so grateful he had this flare up, because finally, finally someone talked to us and let us go at it with all our questions. I felt like I was on cloud 9 after that appointment. It was truly a disguised tender mercy! I'm so grateful I went. I'm so grateful I was there to be the annoying overpowering wife. I talked more than Aaron. I was glad Aaron got it told to him bluntly and that he heard that he is doing a lot and that he's not a wimp or failure. I'm so glad my mom suggested I go and thank you to her and my dad for watching the kids so I could. I'm also so glad our little baby slept the whole appointment, even though I had to nurse in public. It was all a huge blessing and answer to our prayers. Did it solve his MS... sadly no. But, we know more now and with this new knowledge can better take care of him. I'm going to promise right here and now that my sweetheart will be well taken care of and that with me by his side we are going to keep him healthy and around for a long time!

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