Huge thank you and an update

I have been bad about posting lately! So sorry! First I want to thank everyone for a successful MS walk. Hubby had a team of over 50 people supporting him. Last update from the MS Society was that they are still totaling everything but we are over $4,000 so far! Go Team Tinman! 

Symptoms and management: 

It sounds crazy but I find myself watching Hubby and waiting. I wait for another symptom, another sign something is coming through or even a sign that he's feeling better. I think it makes me feel like I am actually doing something instead of waiting for the next shoe to drop. Because of it I notice the little things which can be good or bad. As of right now, he's battling the exhaustion, lack of memory and word replacement. The memory thing is consistent actually. He just can't remember something's. What do I mean by word replacement? It's within his speech. He will be talking and instead of saying the word he means to, another word comes out. It is not all the time, and the word is generally in the same catagory. For example, we were talking about the house one day, and he was trying to say driveway but said garage. 99% of the time he is able to catch it and corrects it which is great but he gets pretty frustrated sometimes. The part that seems to bother him the most is the memory thing. He gets really frustrated when someone comments about him not being able to remember. There have been some people he will snap at and point out that last time he checked he has MS and can't do anything about it, but there have been a few that when they say something, I can see on his face that it's like a dagger to the heart but he lets it go. Those are the moments that really kill me. Watching the pain on his face and knowing how bad it hurts him makes me want to snap at people for him. I don't. I let it go and don't make a scene because I know there is a reason he didn't say anything. 

We head to the Neurologist on Mondsy June 2nd for another appointment. If you have been keeping up on the blog, you will remember that he had an MRI when he was going through the last attack. Since then, the neurologist has requested another MRI because when a new spot or spots come through, they can't see it on the MRI until it has scarred over. This means that they could only see the spots from the attack in August and because he was having another one, now they can't see what new spots that were created during the December/January attack without going through another round in the loud tin can they call an MRI machine. Well, insurance being insurance will not grant another MRI. They are stating that the one he just had was more than enough. I tried to fight it and so did the neurologist but they aren't budging for right now. Either way, we wait until they will approve one and in the mean time we talk about his symptoms and his treatment. The injections are still leaving the "marbles" under his skin but not as long as they were originally. By the time he gets around to the same spot a week later the previous spot is almost gone. Hubby still hates the injections and has taken a look at other options but we will talk to the neurologist. He said if he needs to stay with these and inject himself everyday to not progress that's what he will do. Not that he doesn't hate it every time but what else do you do?  

I will post again if anything changes but as of right now this is where we are at. I am hoping that the exhaustion lets up a bit so he can get back to running again but he has a really long stretch ahead of him over the next 2 weeks and I have a feeling it's not going to make things any better. Who would have ever thought that just before his 33rd birthday, the amazing man I call my husband would have been diagnosed with MS.........it's crazy how life works sometimes. 

Tiller with his Walk MS bandana!

Did I jinx it?

About a month ago I was so excited.....relieved that Hubby was finally feeling better. He made it a few weeks feeling great and the exhaustion has started again :( It doesn't seem to be quite as severe and as of right now is proving to be the major symptom. Is this another attack? Is this just his body being resistant because he's been working so much? I wish I knew

The one thing that's continuing to prove everyday as a sign of him having MS is his memory. I notice that he's adjusting to it with ways of coping and I encourage it. I have adjusted as well in ways to help him and I have learned quickly that where most wives think their husbands aren't listening, mine really does listen, he just doesn't remember. If it things he recognizes needing to remember, he has learned he needs to add it to a list in his phone right away. If it's something I have told him, I double and triple check to ensure he has it in his phone or he remembers. Because of the coping skills it's actually proving to pay off. He's making the adjustments he needs to without even necessarily realizing he's doing it. My biggest adjustment has been learning to quit saying "don't you remember?" If there is one thing that frustrates him it's that single question. 

I am trying to learn to take things in stride. I need to let some things roll and other things need to be watched closely. I am pretty sure I make Hubby crazy sometimes but he's learned that it's all in love and just me taking care of him. 

The neurologist requested another MRI. They explained it by letting us know that when he is in an attack, the "spots" haven't scarred yet and cannot be seen on an MRI. They did one during his last attack and now want another one to see what new spots are there and how many. Our lovely insurance company has denied it because they claim the one he just had should be enough to read. Now I get the pleasure of trying to be understanding of their stance and trying to overturn it. We will see how that goes........

I will keep everyone posted and I hope to see 90% of you for Walk MS on April 27th!

Finally!

I write today with great news :) Hubby is FINALLY feeling better! He's recovering nicely from his attack and I am really thankful he's back to being himself. I was talking to him last night and told him I could tell he was recovering. He assumed I was talking about his exhaustion and I explained that no I was referring to his personality! I don't think he realizes how short and crabby he gets during an attack. He's back to laughing, smiling and being goofy which I love. :) Hubby was so tired he couldn't find it in himself to even run after work. It was about 8 weeks of zero activity before he finally ran again last night. He has learned to listen to his body and only ran until he was tired. Didn't track his mileage or anything so that was good! It's a skill he has had to learn because he can't push the same way he used to!

On a separate note, Walk MS- Appleton is coming fast! Our team is continuing to grow and I can't wait for everyone to come show him the support. I must be crazy because when the MS Society called me and asked for help I some how got roped into the Marketing and PR Chair for the walk. Yes, I know I know. Where am I going to find time........I am working on it! I have a great support system myself! I have been leaning a lot on my mom to take the evening conference calls since I am on deck coaching. She has been the other half of my brain!  I have been doing my press releases and community calendar adds while drinking my coffee in the morning. Yard signs and posters are coming soon! Don't worry! We will show up where we can and put them in your yards :) 

While we prepare for the walk if you want a pledge form to help raise money for the cause or just want to join us but haven't registered, let me know! I will always find time for the ones I love. 

I would generally say Happy Friday but this time of year my weeks are all blended! Here's to working too much! 

Decisions and Updates

Last post I did, we were waiting for Hubby's primary neurologist to read the MRI. They called and let us know that Dr. Price read it and was not nearly as concerned as the one that originally read the scan. He said that all of the new spots, yes there are new spots are ones that he knew was coming. When he was originally diagnosed, the symptoms he was experiencing were new enough that they didn't scar over yet and were not on the original MRI. He knew that as Hubby recovered from the attack, it would scar over and those are the new ones we are seeing now. The scarring on the optic nerve is pretty severe they said but it was what lead to the diagnosis. 

Dr. Price let us know that he doesn't want to do the steroids. He wants to see how Hubby's body will react to the current attack and whether of not his body will recover on its own. Quite a swing from the first one that read it! He will go in for an actual appt and get checked out so we are waiting until next month but he does have to go in. They are considering another MRI in March to see if the new round is showing yet.

He has had his fair share of changes but nothing that is affecting his quality of life or his work. That we are really thankful for. 

People keep saying "you look good!" Like he should be looking like he's sick. I told him he should respond with "maybe but you should see my brain!" He laughed but said that wasn't nice. 

MS is a disease that no one can see. It will or will not progress and for quite a while people with MS start sharing their "words of wisdom." Everyone wants to know how he's doing and he gets it, BUT anything more than that, opinions, pushes, criticizing his decisions etc are unwelcomed. Sure everyone wants to help but nothing has been setting him off more lately that people asking stupid questions. If you are one of those people, please understand that he is his own person. He has to do what's best for him and work with his Neurologist to take care of himself.

We have faith......can you? 

MRI came through

After the waiting game, I got antsy and called the neurology office. Let me back track a second.......they called hubby to schedule the MRI and he couldn't remember what they said the next step was. It was like we were sitting ducks so I took the bull by the horns and called yesterday. Dr's nurse Deb has gotten to know me quite well (good or bad? Am I a helicopter wife?) and called me back. She let me know that there was a change on the MRI and they wanted to do the steroid infusion. It is the treatment for an attack and basically knocks all of the inflammation down. Hubby would have to go in 3 days in a row and be hooked up to an IV bag. Since she knows he travels for work she asked me when he would be home. I told her she had to call him to schedule because he's home right now but I know he's scheduled to leave Monday morning. She made it sound pretty urgent and it freaked me out a bit but being that I was at work I couldn't talk much. I got home and Hubby said she called him and explained everything so here is what we know for right now. 

It was not his primary neurologist that read his MRI. Hubby decided that he wants Dr. Price to read it before any decisions are made since he knows his case and knows him. I more than support this decision. He was told that there is a change in his scans and that they want to do the IV right away to knock the attack out and that the major change is on the optic nerve. He decided he is going to hold off on the IV until Dr. Price reads it. He originally told me he doesn't want to do the IV but I learned it's not for the right reasons. Major illnesses lead to a major financial commitment for the rest of your life and he told me he doesn't want to pay for it. I will be honest, when he said it I kind of snapped. I raised my voice in frustration and then apologized for yelling. I was so upset to hear him still worry about money. It's not about the money. If there is something that can help him and help his quality of life then I refuse to worry about the money. We will make it work we always do. He heard me out and told me he didn't know I felt so passionately about it and if Dr. Price reads the scans and wants him to still do the IV infusion then he will. Part of the hold up for him is he sees it as a bandaid. In his head, why go through it when he could have another attack in a few months anyway? I keep trying to point out that we don't know if this is from him having the flu in December or if this is the direction his MS will go. 

Ultimately this is part of life and we don't hold it against anyone. He could have gotten the flu from anyone and we will have to ask the doctor if this is the norm or if this is from him getting a virus. We may never know actually.

So, we now wait.....again. We wait for Doctor Price to read his scans and tell us what HE sees and thinks. We go from there. 

Hubby talked to his Mom yesterday after he found out that there are changes and she wants him to see a different doctor. See someone that wants radical and aggressive treatments. Hubby said no. He wants to have faith. He knows he will always have MS and the point of medicine and treatments are to give him a quality of life. We need to see if the Copaxone is working and this could be a bit of a set back because it doesn't give the full picture for right now. 

The unknown has become a part of life and we are working to move through day by day. Knowing that we have the marriage we do makes the world go round. Could we end up with some major life changes? Yes, but anyone can. We have talked about the fact that it's possible he will never have any physical disabilities and it's possible that he will. It's possible that there will be a day that he won't be able to work his physical job anymore and I will have to support us. This being in the back of my head as an option is a huge part of my driving force for my career right now. Getting out there now to prove myself and get my foot in the door now is going well with his support. To benefit us in the long run. I have also said a few times lately that if I need to give it up I will. I guess we will see what direction life takes us. No matter what, day by day is our plan. 

I will let everyone know what Doctor Price says but it will more than likely not be until early next week. 

Hang tight and I will post when I can. Happy Friday everyone :) 

No appt....straight to an MRI

I broke down and called the neurologist about Hubby's symptoms. At first they were concerned and wanted to see him....to the point that the nurse was going to double book the doctor to ensure he could get in. When Hubby called to schedule they told him that the doc read the symptoms and decided he needs an MRI right away to see what's going on. Ultimately it's a good thing because then the Doc can evaluate but it's nerve racking. We need to know so we are okay but the continued symptoms are making me wonder if we are going to be upgraded to something other than Relapsing Remitting MS. MRI is Tuesday morning and then we are unsure if they will schedule us to go in or if we are going to be called with results? I hate the unknown. I promise to post when we find out.

On a better note, are you registered for the MS walk in April? I started a team for him so Team Tinman will walk proudly right along with him :) let me know if you are interested! Don't forget!