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.