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! 

Wondering...

I know that everyone wants to hear good news when they read this but if I weren't honest it would not be worth writing. 

What I mean by this statement, is we are thinking that Hubby is starting another attack. We are not sure but as the days go by the symptoms are starting to line up. He has been exhausted for about 2 weeks, his eye is messing up, the fantastic mood swings are back and his classic memory symptoms are presenting with disorientation/confusion. The MS Society released an article last week about mood swings and it was amazing to read. It sounds funny but it was a light shown on major part of his current symptoms. Don't get me wrong, as you all might know he is not known for being a patient person by any means, but now there is more to it. One minute he is the happy go lucky guy we all know and love, and the next something triggers him which launches him into a completely different mood. It is generally something that makes him mad that triggers the change but instead of just being angry, the reaction now is almost rage. He catches himself which is great and when he is crabby he is able to recognize it to talk himself down. Let me point out that the rage is NEVER directed at me or at the dog. I don't want anyone to think he flys off his rocker! It's nothing like that. Now the crabby part, unfortunately because I am his wife and the one that is with him, I am the one that gets to tell him to knock it off.

The article refers to the hippocampus which is a major part of the limbic system. It is responsible for emotions and memories, and if one is to get a new lesion on the hippocampus it can/will cause mood swings, memory issues and emotional regulation issues. Yahtzee...

The other part I am going to watch closely is the confusion. This one may be a reason to reach out to the neurologist actually. Hubby told me he was running errands and knew what store he had to go to but had to step by step process how to get there. He said he was a bizarre feeling of disorientation. He made it without issues and I am glad. I am hoping this is just a sign of the attack that's coming or he's in one now and we have no definition of how to tell the difference realistically. 

I can tell you that Hubby is not too happy about this idea. It's truly bothering him that he just had one 4 months ago. I know that they can be caused by trauma or going through something so I am wondering if him having that stomach bug caused him to launch into another one? I don't know....all I know is this makes me a bit uneasy. I told him last night that no matter what we will do it together. The concern at this point is if it was not caused by the stomach virus, that he will have 3 per year. That will more than likely cause for a medicine change which may not be the worst idea since the injections still hurt and are leaving marbles under his skin. He has not injected his legs since we met with his nurse and he still has perma- bruises on his thighs that we are still praying go away. 

I will keep everyone posted :) it is a way of communication, but this is also my way of getting some of it out of my brain. I have to remember that even though I am not directly affected, I am going through this too. 

Thank you all for continuing to think about him :) Happy Monday 

Start of 2014

Happy New Year! It has been a while since I posted and I apologize for it. Realistically life has just been plugging along which is a good thing. To be honest, Hubby has stated that he's not all that confident that too many people even read this anymore. Either way, it is still a great way to keep everyone updated that is interested.

At his last neurology appointment we were told that we needed to get flu shots so we did. The important piece of the flu shot is for the nasty, knock you out for a week, would rather choose death kind of flu and not the 24-48 hour stomach bug that seems to be around. This was a defining moment for us because we both got the bug. On Christmas Day we flew to Florida to have Christmas with his mom and family. As a side note, I was really nervous about the weather causing issues for him but being this time of year it proved to not be a problem. Anyway, when we arrived, we were all in a condo together and the family started to get sick. It was the flu bug and not the influenza but even still it was knocking everyone out one by one. Hubby and I did what we could to enjoy Daytona Beach, including the day that Hubby did the Nascar experience at the track. (The smile on his face was unforgettable when he got out of the car) We were there from Wednesday to Sunday and by Saturday night we were still holding strong. At midnight I lost the battle and hubby got sick about 4 am. Being that we were suppose to fly out, we got up and got ready but my mother in law decided that hubby was too sick and called the airline. Did you know they they won't let you fly sick but require you to go to urgent care to have doctors documentation? It's not surprising I guess but it was a bit of a pain when it happened. Ultimately we were thankful because by the time we got back to the condo hubby was drained and commented that he didn't think he would have made it through the day of flying. After a day of sleeping, we were able to fly out the next day. The fear was that since he has MS that he wouldn't be able to recover as well as the rest of us. It ended up that We were the least sick of everyone in the condo. It was miserable don't get me wrong but he proved that he takes care of himself and was able to recover. He made it through with no issues other than being drained energy wise longer than the rest of us. Whew! 

Knowing that it was time to write again, I asked him if there was anything he wanted me to say for him. A little side note if you will. He's not a man of many words, but this is from him. 

"Thank you to everyone for the support. I have come to terms much better over the last few months and while everyone moves forward, I am ultimately still the guy with MS. I run to ensure that I still have full use of all 4 limbs in 20 years. I take my injections everyday and no matter how much they suck, it's my reality. The only physical signs I really experience are my left eye, which is 90% healed and my lack of balance. My wife points out that I still run and she's right but if I am standing still and try to pick something up off the floor, or make a 180 degree turn in place, that's when I am reminded. Please don't feel sorry for me. I am a fighter but I still have my dark moments when I ask "why me?" I have a great support system and I move forward every day. You want honest though? It really sucks when people ask "Do you remember?" Or I hear "how can you not remember?" Yep, I don't remember. I laugh it off sometimes but other times I get mad and walk away. I don't expect people to understand but if you couldn't remember things you knew you should, wouldn't you be frustrated? Again, don't feel bad for me. Don't think I am dying, don't worry that I am going to be in a wheelchair, just don't. I don't want to be treated any different and I surely don't want anyone to feel sorry for me. If it it has to be me, it is up to me. Thank you to everyone that still reads this and thank you to everyone that has registered for the walk in April."

We were suppose to go to an MS benefit over the weekend but Mother Nature had other ideas. We are looking forward to trying to attend an event to support others but I can tell that Hubby is nervous about the idea of meeting people in wheelchairs or using walkers.  I am encouraging that he will see more people that are like him and not to worry. MS is different for everyone and I am sticking to the fact that we have to follow through everyday with just him. We will take each situation as it comes and what will be will be. We will do it together. 

Hubby admitted to me that there's a lot he doesn't tell me. He doesn't want to depress me. Hearing that he keeps things to himself hurt worse than talking through things or being part of his support system. It's a large part the process but as we move forward I truly hope he realizes that by talking about it and telling me what is going on, it will help him emotionally and honestly will help me too. Writing this blog is really the only time I express what I am thinking. Evidentially we are both going through the plug of life and trying to almost ignore the MS by establishing life all over again. Here's to a happy and healthy 2014! 

Team Tinman will walk on April 27th, 2014

Hello everyone! I have officially registered a team for the Walk MS event. We would love the support! Come join us and show hubby how many people are behind him. 

Visit www.nationalmssociety.org and scroll down to the Walk MS button. This will take you to a page that will allow you to select Appleton on the 27th and then you will select Join a Team. Type in Team Tinman and it will show you my name as the team captain for verification. Select it and you will have the option of a virtual walk if you cannot physically be here or you can register to walk with us as one group. Let me know if you have any questions!