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! 

Meds Update

Hubby has been struggling a bit with his injections. I try to support him but I can't imagine how hard it is to not only inject himself everyday, but to know that each time it will feel like a bee sting :(

Knowing that he was going to be home, he called his Shared Solutions nurse. When he initially had his injections training, she was not able to line up schedules to be able to come to the house so she sent another nurse that works with her. It was not a bad thing but we never had the chance to meet Lyndsay until yesterday. We both took our lunch and met her at the house at noon to show her everything he's going through. To give you a non graphic visual, within 20 minutes after his injection he has a large bump at the injection site that has a large hot spot around it. These originally started in his legs (his legs are always the hardest because he has NO fat on his legs) but over the last month or so each of the sites have progressively started reacting. 

Hubby put shorts on to show her his legs as well as the other 6 sites and we learned a lot. Lyndsay said that the Copaxone medicine is mixed with a solution called Mannitol. From what I understand, Mannitol is an alcohol-sugar used in both Copaxone and Rebif (another MS injection) that is used to "open" the blood-brain barrier so that the real medicine can cross it. It is not the Copaxone itself that people have the struggle with, it's the Mannitol. She promised that the reactions will go away- said she would put money on it. Your body gets used to it but it can take 6 months to a year......um......really? Okay.... 

With the auto inject, the syringe gets loaded into it and there is a twist top that is the depth setting. She changed the settings and pulled back on the frequency of leg injections. She only wants him injecting his legs once or twice a month to allow them to heal and moved the sites further up his leg. She said to put his hand on his leg with his finger tips on his knee and only inject above his hand. Check! 

There are many ways that patients have adapted to the injections and she shared a few of those with us as well. He can use a heat pack, inject, and then an ice pack, he can use ice, inject and then ice again.....she told us there is no easy solution and to try everything. We will see how it all goes but it was nice to relax a bit about it. The part that was not relaxing to hubby was when she said he could try a manual injection. HA! Nope! I told him I would not have a problem with it if he wanted me to try it and he answered with "absolutely not! I have zero interest in trying a manual injection." We will try everything that she told us we can try and we will see how it goes. 

It is nice to know that everyone has the same reactions while your body gets used to it but I wonder how many people throw in the towel. Would you inject yourself willingly everyday if it hurts and basically leaves track marks? Hubby said his reactions and his bruises make him feel like an illegal drug user. 

Above everything, he doesn't feel sorry for himself. You can't look at him and tell he has MS and that's his goal. There are no physical limitations with movement - ie arms and legs and he is continuing to run and do push ups to ensure that he does everything he can to stay that way. 

Many are worried and some are thinking the worst but I am telling you that he is one of the strongest most stubborn men in the world and if you think that this is going to slow him down, you need to remember who it is we are talking about! :)

Love sent to everyone reading <3

My first MS event and the infamous newspaper article

Forewarning! This one will be a long one......

Yesterday I went to my first MS event at the Neuroscience Group in Neenah. It was a beautiful new building and I was nervous going in and not knowing what to expect. It was actually a "lecture" set up and the presenter was a female Neurologist that works out of that location. (Side note: hubby's neurologist rotates out of Neenah as well....one week in Appleton and one week in Neenah) 

The lecture was titled "The Big Picture" and she went through all of the basic information that is multiple sclerosis. As I have stated in past posts, it is being assumed until proven otherwise that Hubby has RRMS which is Relapsing-Remitting. This means that when he has an "attack" he is suppose to recover at a minimum of 80%. Since the optic neuritis is considered his first measurable attack, they won't be able to diagnose any differently until something would change. There are 3 other versions of MS that unfortunately could be a possibility. The othe 3 all involve a worsening progression so we aren't focusing on that part right now. 

I learned that the lesions created by MS can also present on the spinal cord and not just the brain. This I didn't know before and realistically it scares the crap out of me. It's logical once you think about it but I don't have any desire to think about it! 

I had one of my girlfriends with me for support but also to continue her own education on the disease. I will never forget her words.....when the presentation ended, she looked over with a straight face and said "you processed all of that information in a matter of a month?" My response was "no, 2 weeks actually." She couldn't believe how much there was to take in. 

The part that I think hit home the most was again the fact that men that are diagnosed are generally more severe. 1 in 3 people that are diagnosed are men. 1 in 3......my husband is in that percentile and I am not liking the numbers. :/ 

Once the presentation was done, the neurologist opened up the floor to questions. The first question that came through was regarding the article that ran in the Green Bay Press Gazette and the Appleton Post Crescent on Tuesday November 12th. To give you a background, the article was about an Appleton man that was diagnosed with MS in 2004 and it completely deflated him (his own words). He started a clinical trial of the drug Alemtuzumab in 2010 after continuing to worsen and the article goes on to say that it has been a miracle for him. He has officially gone from 18 lesions to 0 and feels like a whole new man. It's a very inspiring article and I think it is absolutely inspiring that he feels so great. My take when reading the article was that something seemed too good to be true. 

So back to the neurologist answering questions. The first question was about the article and whether or not she had read it, and if so, what her take was on it. The neurologist answered that she had read it, and while it was a greatly inspiring article, she was disheartened that the newspaper did not provide full information regarding the trial. I learned that it is helping some, but really hurting others. The side effects are so severe that people are wishing they never did it. The list was everything from kidney failure to lymphatic cancer. Cancer?! Really?! Here the article was light hearted and he couldn't praise the drug companies more because it has basically cured him but others are either dying or dead. WOW that's a drastic swing

It seems everyone has read this article. Hubby and I both received emails with the link and someone in my office even brought me the article knowing I don't get the paper during the week. From what I understand, the FDA was going to hear information and testimonies this week regarding the new "wonder drug" so we will see what happens. I personally know I am not going to suggest it but it's not my decision. I leave all treatment options up to my hubby and provide support. 

After the lecture, we had the option to talk to the neurologist personally. I was struggling at that point to be honest, but I had more questions. 

My first one was about the Copaxone injections and how long it  generally takes for patients to start feeling better. My balloon was further diflated when she told me that Copaxone is not designed to make someone feel better. It's sole purpose is to prevent as many further lesions as possible. Really? I am sorry, then why is he on this one?! Doesn't make him feel better? Awesome........

She then said that it generally takes about 6 months for the medicine to fully build in his system and start doing its job. So, she basically told me that he's not going to feel better because of the medicine and it's not expected to really fully work until March of 2014. Talk about take the wind out of your sails.....my heart broke 

I took a deep breath and then asked about the reactions he's having at the injection site and the symptoms that are presenting now. She said that if his body is not adapting to the daily injections that we need to call the nurse back in to show her what's happening. If it continues to get more severe, starts a black spot in the middle where the needle went in or the bump starts to depress in the middle, then we really need to worry........check

The symptoms.....balance, the continued eye, his hand eye coordination, etc can all be due to the optic neuritis or can be new symptoms. She couldn't give me a straight answer without reading his file and seeing his MRI results. I did however find out that the new studies are finding that instead of just the mylin sheath being damaged and causing the lesion it is now being found that it can also be damage to the nerve itself. They are discovering that if the attack is severe enough that it's basically like cutting a wire straight through and not just stripping it as once originally thought. This left me with more questions but I honestly couldn't take anymore. If my girlfriend had not been there with me I think I would have started to cry when I got into my truck. 

I hate feeling helpless! I hate continuing to have questions and having to learn that the answer seems to consistently be "time will tell" NO! My husband is 32, almost 33 years old and if you are telling me that I have to just sit back and accept the course we are on I am the type that will dig my heels in. Don't tell me that I have to accept the path because I will tell you that all paths can be rewritten if you try. So frustrating......

Of course when all this is happening he is out of town for work and it's leaving me to try and communicate all of this over the phone. Yuck

Oh! Before I forget! The MS Walk in Appleton has been set for April 27th 2014! Are you going to walk with us? I hope to have the team set shortly and will post the information as to how to register for Team Tinman :) 

Thank you! We love all of you with everything in us and your support is amazing! Thank you thank you thank you from the bottom of our hearts

Everything has its ups and downs...

Since his diagnosis in August, Hubby has been amazingly strong. Nothing has stopped him and since I know there are different ways of coping, I have been wondering when it would hit. 

Saturday was that day :( We were at a wedding and he was trying with everything to smile and have fun. I knew something was wrong but wanted to let him tell me what was up. He only had a few beers which was my first clue. Weekends are when he allows himself to have a beer or 2 but I am quickly learning it's more at home now. 

We had fun in the photo booth and then when a slow song came on, he asked me to dance. We stepped onto the dance floor and he said that he wanted to dance with his wife while he still could. My heart broke to hear him say that. I started crying and asked why he would say that. Come to find out he was struggling with the idea that he has MS all day and didn't say anything until that moment. The depression of the disease hit him hard and has him wondering where he will end up. 

It is all being caused by his awareness of his body. His hand eye coordination is not quite right, he said he is losing faith that his eye will ever get better and when we were dancing I noticed that his balance was off. He sways a bit but I was able to redirect. I can't tell him I understand, I can't tell him that it will all be okay and I can't fix it. All I can do is hold his hand, stand next to him and be there. It breaks my heart because I am a fixer. I want to make everything better! This I can't fix :( all we can do is adapt. 

Things happen that we don't have answers for. I have more and more desire to find a way to do something....someway. I think if I have the productivity it may help. It's crazy how much MS can be on my brain sometimes....wondering.....waiting

I guess we will find out more in March when he has his next MRI. 

Have a great day everyone! 

If it has to be me, it is up to me

This is hubby's new mantra! He read it in a newspaper article about a woman in the area that made herself a star in the community and recently lost her battle with cancer. 

Everyday he shows me that MS isn't going to stop him. It's unbelievable how positive he is and I love him for it that much more. He doesn't let it define him! He makes it a part of his day and it's amazing. Granted, he doesn't want to tell the world but he isn't going to keep it from anyone either. 

Hubby bought orange running shoes as his motivation. Told me that every stride in his orange shoes is his proof to himself that he has joined the movement (the MS walk theme is Join the Movement). 

On Sunday night we were watching TV before bed and a commercial came on that had a guy throwing something to another guy. He calmly says to me "I would have dropped that." I haven't noticed any hand eye coordination issues so I asked how long that had been going and he answered "a few months now" and shrugged it off. It was another realization that we don't know what the lines are since this is still so new. Where are the lines drawn? I am sure a lot of it is being more aware now, but truly defining things is interesting. How do we define the differences from him getting older, having MS or from his daily Copaxone injections? Will we ever truly know? I don't know......

Another example is the new concept of him talking in his sleep. I feel bad for his roommates when he is out of town for work! Sometimes he talks clearly but most of the time he just babbles. It's almost funny to type it out but I can't explain how much he makes me crazy sometimes! I am a lighter sleeper and to have him babbling next to me at night can mean no sleep for me. I hope my body learns to ignore it eventually.....similar to a husband that snores. If he were home more I bet it would be easier. Don't get me wrong though! Having him home next to me is more important to me! It's just one more adaptation in life we have to learn to move past. 

MS is not going to win in our house! This all goes back to my first post.......MS must be female........

Neurologist today

Hubby had his follow up appt today with the Neurologist. He asked questions about how his body is handling the injections, gave him a lecture about working too many hours and not letting his immune system catch up, and told us that he will have another MRI in March to see if he has any new active sites. 

There are some memory concerns right now that seem to be progressing.....more short term than long term but memory none the less. They said its possible his immune system is still misbehaving but we won't know until after the scan. The best we can do is compensate and keep up with the injections. I am crossing my fingers that it's not another active site but we will see what happens. 

So far he has had about 40 injections. No major side affects so that's great news! I asked today what the expectation is for how long it takes before the injections take full effect. His doc told me that all tests are showing the Copaxone against Rebif which is another injection option so it's not 100% conclusive. If there is one thing that makes me crazy, it's being told that it's not 100%. I feel like nothing about this frustrating process is! It is human nature to want cause and effect.....action and reaction.....not to be told "well, we will see" .....kills me. Fix it! Help me help him! Don't tell me we will see....I can't stand that part. 

Anyway, enough of my ranting :) 

On a better note, I am happy to report that yesterday was a great day for him. Hubby only had to work an 8 hour day and felt great! He actually had energy yesterday and was fully responsive at the end of the day! It was great to see him like that :) He hasn't had energy or felt that good for about 3 months now. Great, great, great day in our house. 

Called Shared Solutions today to check and see what we can do about the reactions he is getting in his legs. Out of the 7 sites it's really only the top of his legs that he has a problem. Almost immediately he gets red and a huge tennis ball size bump shows up. It's really tender but he pushes through it. They gave me a few ideas on how to help it not react so bad and said it is because he is so muscular in the leg. Well, I guess this is one downside to being a runner. We will try what they say and see if it helps.

Forgot to ask about recommendations regarding flu shots when we were there so I have a call in to the nurse. I think with how bad he's fighting right now, the flu would be 20x worse for him than it is for any of us. I am fairly confident that he has never had one before so it may be interesting to convince him.....we will see what the nurse says. 

Lastly, there are walks every year for MS as there are for just about anything else. I think he wants to do it in the spring so I asked this morning if he wants to do a team. I would be willing to be the Captain and set it up and he said he would like that. I will work to set this up and hopefully everyone that he knows and loves can come do the walk for Team Tinman :) I will keep everyone posted! Let me know if you are interested and I will keep you in the loop. 

Have a great day! 

Moving forward....

As life continues to move forward, I am reminded that Hubby is a trooper. Everyday he has to inject himself and never complains. The injections feel like a bee sting for about 10 minutes afterwards and I can't imagine it. Can you? Being stung by a bee everyday? It's crazy! He is still getting huge reactions on his legs and now his arms are starting. I am thankful though that this has been the only side affect. 

On the financial side, we are surviving it. Bills are coming in slow enough that we are thankfully able to send them right back out. This was one of the parts of the MS that was really bothering him and he is realizing that we are making it through. 

He has a follow up appt with the Neurologist on Tuesday but we aren't 100% sure what we are headed in for. We know there will be another MRI in a few months to see if the medicine is working (cross your fingers) and we will hopefully learn whether or not they are still maintaining the RRMS version. 

I will update again after his appt! He really truly amazes me everyday and I am thankful that we have such a strong marriage. We are doing it together and even though I can't take the injections for him, I stand with him to be everything I can as his support system.