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!