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. 

Minor reactions

Hubby's body is starting to recognize the fact that he is doing injections every day. His legs are the worst which I guess isn't surprising because he has NO fat on his legs. He is ending up with large hematomas at the injection sites in his legs :( 

He told Shared Solutions because he was worried he was hitting the muscle but they reassured him he would feel differently if he had. Evidently it is just his body not liking the injections right now. 

Don't worry though! He is not having any problems with his heart racing or any other physical reactions. It is nothing more than a sensitive bump at the injection site. 

He is also still dealing with the blurry vision when he runs. It breaks my heart because a run should be mind clearing and instead he has to focus on where he's stepping. I worry about him but with my schedule this fall we aren't matching up so he's running when I am coaching. It shouldn't worry as much as it does but I can't help it I guess. Hubby did roll his ankle once a few weeks ago but I was with him. 

I am curious to see what he does to adapt when the snow starts. We have our Y membership so we will see if he switches to the gym. The issue is that I don't think he will be able to run on a treadmill until his eye clears up. We were reassured that it is suppose to fully heal but can take upto 6 months for a full recovery of vision. 6 months! It seems like such a long time! From what I understand, when a MS patient gets optic neuritis as an "attack" it is the easiest way to diagnose MS so we got lucky that way but is the longest to heal. :/ 

Oh, before I forget, I am beyond thankful for insurance. We were concerned about what the bills would look like and so far we have had 2 come through. They are still bills but we are surviving them so far. Thank you to everyone for keeping us in your prayers! Your love and support means the world to us. 

Doing well!

My apologies for not posting an update about Hubby's meds! The appt was actually moved to Saturday morning but she came prepared with saline prepped needles so he could practice. All of his syringes come pre filled which makes it easy!  There are 7 places on the body that can be injected and Hubby has to keep track so the same place does not get medicine each week. I was truly wondering how the needle concept was going to go but he's being a trooper. No one WANTS to give themselves shots everyday but I am proud of how well he is doing. 

Shared Solutions is the company for Copaxone and they are the ones that are taking such good care of Hubby. He is getting phone calls, tons of information and they are the ones that pay to send the nurse to come teach you everything. My favorite part would be the auto inject. We learned they no one else has it and I really think that it's a big reason that he's doing well with the shots. What is it? 

The auto inject is a pen of sorts. Hubby unscrews the two pieces, cocks the bottom, loads the syringe in, screws it back together, sets the dial to show the depth of the area depending on where he is injecting, sets AJ on the area with just enough to compress it and pushes the button. He describes it as feeling like a bee sting but not until after the medicine is in. With the AJ he doesn't have to pinch skin, doesn't have to watch the needle and doesn't need to pay attention to needle or angle of entry. It's pretty much a godsend. 

The one slight hitch we ran into is that they syringes are recommended refrigerated. They don't have to be, but its the best way to regulate the temp of the medicine. With him traveling for work, we had to go get a hard cooler to try to make this work for him. So many coolers are soft sided! I get that it's a lunchbox concept but they have so much going on in the work vans that we weren't about to take the chance since the syringes are glass. One throw of a piece of equipment and that glass would be toast. We also have to watch the temperature. They have to be cold but can't freeze so he packed an ice pack but put a towel on top before the syringes went in. For now its an extra hassle when he's packing to go out of town but I am confident it will just become part of his routine. 

We were warned that its pretty common to have a reaction on occasion. The two major ones are a hive at the injection site or that his heart would start to race after the injection. The hive isn't too big of a deal, but if his heart starts to race he has to sit down for 20 minutes and let his heart rate come back down. Because if this potential, he's taking his shots in the evening when he has time to relax if needed but I am happy to report that he has not had any problems as of yet. 

Thank you to everyone for your continued support. We are very lucky that it was such a fast diagnosis but we are working towards a normal life. We have had weeks and weeks of questions and curiosities. We have tried our best to keep everyone in the loop and know everyone just wants to check on his progress. Please know that he's doing great and most people will never even know he has MS. That is very much his goal. He may be a bit moody, and he fights the daily exhaustion but he is still the same feisty stubborn hard working. Man that we all know and love :) 

Tomorrow is a big day!

After weeks of phone calls and red tape I was finally able to pick up Hubby's injections today!!!!!!! Too bad he's out of town for work! Figures, right? 

Tomorrow at 3:30 pm the nurse is coming to the house to teach him how to use them and he will finally be on his path to maintaining this awful disease. 

Shared Solutions set him up with a peer to peer call the other night and I think it really helped him. Mr. I hate talking on the phone actually talked to his peer for over an hour and learned the little things that only an MS patient could tell him. That I was really thankful for. No matter how much research you do, and no matter how much you talk about it, I think he was able to gain some great tips! 

Yeah! 

This truly feels like a light at the end of a long tunnel. He may not enjoy the needles everyday but now he can take care of everything without any road blocks :) 

Learning his limits

Last night was the first time we were able to have a full conversation about hubby having MS. I was amazed at how good it felt to just sit and openly talk about it! It is finally feeling like there isn't a ghost in the room. 

Part of our discussion consisted of him learning his limits. I am married to a hard working, never slow down, always fixing, putzing and tweaking kind of guy. Because of this he is having to learn that by the afternoon he is exhausted. Exhaustion is causing 15-20 minute naps when he gets home from work and is just enough to keep him going. When he doesn't allow his eyes to shut and rejuvenate his body for a bit he is quite the force to be reckoned with so I am welcoming the naps! 

Another limitation he is having to come to terms with is his love for hot showers. Since the weather has been cooler, his eye has not been as bad so he decided to take a hot shower. His eye ended up completely blurry and took a bit to recover. Hubby admitted last night that hot showers are a thing of the past because that was not fun at all. 

I guess we will plug along and continue the learning process! 

Yesterday we had a packet come in the mail from Shared Solutions. It was all sorts of information telling us about Copaxone and a newsletter with advice from others. It was a minor victory when he picked it up and read it himself. I am usually the one that reads all of the paperwork so this was a big deal! 

I really love this company. They are very proactive and are involved with his treatment plan. Hubby said he really likes how involved they are and take such good care of him. Granted, we are still waiting for the injections to finally arrive, but I have no hesitations about giving Shared Solutions the control. (Yes, giving up control is a big deal for me) 

There is no longer an MS ghost in the house. As we wait for medication and progress, I am thankful that with the small pieces of mail and phone calls from Shared Solutions, it still feels like we are getting somewhere. 

The fatigue!

One of the biggest symptoms of MS is fatigue and I can vouch for it. My poor hubby has been absolutely exhausted. We are still waiting on the injections and I can only hope they will help him. It's Labor Day weekend and he has had to work so its compounding the exhaustion. Naps are becoming a regular thing in his day and he doesn't hold still very well. Because of it he's getting really frustrated. I don't blame him!

His optic neuritis was really bad yesterday as well so I am hoping that with the cooler weather he is able to get some relief.

On top of everything, Tin Man still has to run and afterwards he's absolutely wiped. I guess he is going to have to learn his limits but for now I just wait and hope the Copaxone comes sooner than later. 

Happy Labor Day! 

Watched his heart break a little

We have learned that there are things called "triggers" when it comes to MS. It's the same as it is with migraines or anything else that has cause and effect. 

According to everything I am reading, the list isn't too bad or hard to remember but here are the big ones. 

Red Meat- not awful since we don't have it in the house because I can't eat it either but now he will have to be careful of when he eats it and how much in attempts to not cause a relapse. 

Eggs- this one doesn't really make sense to me and when I told hubby he made a face that made me laugh. Didn't really make sense to him either but who knows. 

Cheese- this one busted his bubble a bit- he's decided moderation is key lol

Refined sugars- aka white foods. The good thing is that he doesn't eat white bread, but he loves pasta and MIL's chocolate chip cookies! This one got a "well, I will have to just eat some every once in a while!" Pretty sure it's the cookies that broke this one in his mind lol

Caffeine- luckily he had already backed off on his caffeine intake and doesn't really drink soda but informed me that nothing was going to take his morning coffee away 

Alcohol- this broke his heart! Hubby LOVES his beer! Not on a "slam bud light out of a can to get drunk" love but a "lets try this one and see what we think" kind of love. We asked the Doc to see what he can and cannot do and he was told moderation. 1-2 beers can be okay but anymore then that and he's risking his muscle function and increasing his fatigue levels more than the average person that drinks. This more than explains why the first thing he loses when he starts enjoying an evening is his balance! 

I have no doubt that he will push his luck on occasion and will have to recover but in my mind its his choice. If he knows the consequences and still chooses to do what he wants, then I will be right behind him for the next week reminding him why he's so tired, right? Isn't that my job? :) 

Meds process

Update on where we are at......shared solutions called and got Hubby's info so they can start the process. PROCESS is the key word!

The meds manufacturer will contact him to set up the delivery of his injections. Nurse said this can take anywhere from 2-3 weeks to receive and when he gets them he has to call her back. She comes to the house then and teaches him to use them. I have a feeling that will be quite the turn of events in our house. Either way it will be good to get him started on his meds. I still have so many questions.......like, once he sets this all up, will we be able to pick them up at the pharmacy then? It sounds like the pre filled syringes need to be kept in the fridge- I am assuming that for travel and when he's out of town that this means we need to get him a cooler of some sort? Either way, we are headed in the right direction. 

His next MRI will be 6 months from the day he starts the injections to see if he has any new spots that appear. This will determine what version of MS he actually has. Right now they are saying that since this was his first "attack" that they are assuming Relapsing/Recurring which is good. Anything else will be continued damage no matter what scale the damage is actually on. 

I got a chance to talk to someone at work that was diagnosed with MS 12 years ago. It was nice to sit down and talk to her, ask questions and not be freaked out by all the crap on the Internet. When I told hubby who it was that I talked to, he was shocked because he had met her before and commented that you would never tell. I think that was pretty great because he said "see! That's what I want! No one to ever be able to even tell that I have MS!" She has a walk team that her daughter started and invited us to walk with them. Someone else does the yearly bike ride and asked us to ride with them. Not thinking that this girl on a bike is that great of a decision but we will see! Hubby told me he doesn't know if he's ready to meet others that have MS and I am okay with it. He needs time and if  he decides he wants to or is ready then I will be too. 

So many people have said they are praying for us. If you are reading this it means I more than likely sent you the link and your support means the world. Thank you to everyone that is keeping track of us and know that we love each and every one of you no matter how far away you are! 

Tin Man

Not long ago.....less than a year I suppose Hubby started working out. Let me back up- he travels a lot for work and awhile ago one of the stays was about 6 months long and the hotel gave them a gym membership as part of the stay. He had  never worked out before but decided it was time to stay busy. Thankfully he has stayed active and took up running. It was when he was running that he first noticed his eye so I guess I can be thankful that him being active led to the diagnosis. At our first neurology appt he was told that the best thing for him was to stay active. Next thing I know, he's telling me he has to run and stay loose like the tin man with his oil. (Interesting analogy, isnt it?) It's almost to the point of obsession! Well, I guess I can get off my butt and run with him to make sure he's okay since he can't see out of his left eye when he runs. MS and all he is still running circles around me! It almost makes me laugh but for his sanity and mine I guess we are going to run! Stay active! CHECK! 

Doc....again

Yesterday we finally had a chance to ask questions and discuss medications. Hubby is struggling to still think this is anything but a bad dream and I am in "Fix It" mode. Maybe some day we will process this? I have no idea what to expect. 

I said something to the neurologist about a pharmacy to pick up meds and he almost laughed at me. Come to find out that there is a PROCESS. Of course there is! Why wouldn't there be! Everything has been....whew! 

Process to start medications......the Doc has to fax in paperwork to a company called Shared Solutions. They work with our insurance company to get us the best price possible and then send a nurse to our house to teach him how to inject himself everyday. My hubby sure wasn't thrilled with an injection but made the decision because our insurance only covers 1 of the oral options and it sounds like a lot of heart risks. He just wanted to daily shot to become a part of his day and I don't blame him. There is a new oral medication that is a major buzz in the MS support groups and social scene! It is suppose to be the new wonder drug that is keeping the relapses down to a minimum which it exciting. Hopefully some day insurance will decide that needle injections are old school and meds would be better taken if it was a management pill? I could never work for an insurance company......just sayin'

Hubby has to have an MRI again in 6 months to see if be is progressing or if there are more spots.

I am waiting for the day this all gets easier....I know I keep saying it but it will happen right? He will start meds and his symptoms will level out? Dear God please?! These mood swings are worst then a pregnant woman.......

So short and so quick to snap! I love my husband with everything in me but being someone that is not one to take crabbiness or being yelled at very well I am going to have raw spots on my tongue from having to bite it. This is something I am truly crossing my fingers about. 

Once the 90 degree days relax and the nurse comes to show him the injection process, then do we catch a break? Well, I would bet that will be about the time the bills start coming in so the answer is NO. 

The Internet can make it worse

The Internet is not always a great thing. I spent the weekend doing all of the research I could to find out what I thought I needed to know about MS. BAD idea! All I ended up doing was freaking myself out and thinking everyone was crazy. How can it even be possible? How can my husband be lumped in with all of these reports of pain and trouble? Is this really what he's in for, or will he be one of the ones that will be okay? I guess we will find out.......

There are so many pieces of this that are unknown.......how do we possibly get answers for everything? I feel like I need to do something, but what? Great big question isn't it?

Nothing prepares you.......

Nothing prepares you is right! Nothing prepares you to start weeks of doctors and appointments and then WHAM!!!!!!! Your husband has Multiple Sclerosis.  Yup, you heard me.  My 32 year old husband was just diagnosed with MS.  It is interesting that since he is the one with the symptoms, that I am noticing as I go through the stages of coping myself.  Quick synopsis as to where we are at with things because I feel like the story of everything could be recorded to make it easier.
A few weeks ago my hubby tells me that his eye was funny when he was running so I told him to get his eyes checked.  (Thursday) Appt #1 was the Optometrist who was great but said she didnt have the equipment to fully test him but that she thought it was Optic Neuritis. She gets him into a specialist the next day since he has to work out of town the next week.  (Friday) Appt #2 was the Ophthalmologist who proceeded to talk in circles, tell my hubby he was just fine and didn't have the optic neuritis but when questioned told me that the next step would be an MRI but he didnt think it would really go anywhere.......total arse of a man in my opinion.
(Monday) My hubby travels for work and left for Iowa but was still having a hard time with his eye.  In the mean time, I am working to get the MRI approved by the insurance while trying to work myself. 
(Wednesday) Not only am I still fighting insurance but now the eye has paired up with a numbness in his upper lip and hes worrying me.  Enough was enough so I called his GP desperate for someone to tell me what he needed.  They didnt make it any easier on my blood pressure when the answer I got was that he needed the ER asap and he was still in freaking IOWA! His foreman got him in the work truck and I got in my truck and met them half way since he wanted to come home and be with me for everything.  In the truck on the way back he called insurance to find out about the MRI approval and they tell him it is still pending because the doc that ordered it (my favorite one) didnt give them enough information.....AWESOME.  We went straight to the emergency room anyway because we werent taking any chances. Its amazing how fast they move when you say you are there because of blurry vision, eye pressure and numbness in the lip on the same side! Blood tests, EKG and a MRI later lead to some serious exhaustion.  At about 1 am the doc came in to say everything was clear and a non emergency but there was something that showed on the MRI so the next step was to meet with a Neurologist.  

(Friday) We meet the neurologist at 3pm which is pretty impressive for a Friday afternoon because I dont know if I would work late appointments on Fridays but I was really thankful that he was there.  He turned out to be great and my hubby and I both really like him.  Doc did all of his tests and said that he did have Optic Neuritis (at this point the arse of a doc from the week before was on my "list") and showed us what he was looking at on the MRI.  We knew that he had "white matter" but that was as far as we had gotten. He was great in showing us the spots that he was focusing on and then when my hubby asked what it was he explained that he had to confirm but he is 80% sure it is MS.  My heart sank and I saw hubby's eyes glaze over.  Doc told us he would need a spinal tap to confirm everything and then results would take about 2-3 days. 

(Tuesday) Spinal tap day went quite a bit faster than I thought even though we were spending yet another day at St Elizabeths Hospital and everyone we met was just great. 

Spinal Tap went great but let me tell you how interesting it was trying to keep him still! He made it through the first movie and then decided he was going to clean the bathtub.....yep! I won that fight but my god he makes me crazy! (in a good way :)

(Friday) We still hadnt heard so I called the office and spoke with the nurse.  She told me that the Doc wasnt there but another one was and had read the results but since she was the nurse she couldnt read them.  I asked straight forward that if the other doc was there and had read them, then everything is back and ready?  The nurse answered that yes it was and that the other doc concurred with the Doc we saw Friday. 

So, this is the preview and the basis of everything else i will talk about.  The only other part is the name of my blog.  I have decided that MS is female.  Not in literal terms I promise but in emotion.  In the way its fighting.  In the way its effecting my hubby without him realizing whats happening until its too much. To be honest, its nice to just be able to say MS must be female so I can say "what a B---H!"