Advising no injections for now

Just a quick update so everyone can rest easy. Hubby called Shared Solutions to tell them about the anxiety attack style reactions and the bad reaction the other night. He told me she was concerned and said it was not normal to start reacting at this stage. No injections until after meeting with the neurologist. I am okay with that. It's only a few days and the idea that he would be out of town or I would be out of town when another reaction would happen is scary. Hubby told me last night that he was really glad he was home because if he had been out of town in a hotel whoever he would be rooming with would freak out. I whole heartedly agreed and said that I freaked out but anyone else would have more than likely called 911. He asked why I didn't ....... I just knew. I was waiting to see if I needed to do something more. Honestly, I was thinking about it. He needed a chance to fight through it but I remember thinking I may end up doing chest compressions on my husband. Let me tell you, that is never something that anyone should have to process. 

I am relieved that he gets an injection break. I think it's time to explore another option. He described his stomach as an injection mine field because he had to add extra stomach shots when he stopped injecting his legs. He still gets the marbles at the injection site so you can almost play connect the dots. Hubby said to me that it sounds vain but all be wants to do is take his shirt off and not look like an addict. I more than understood :( 

Not getting easier

My mind is a million miles an hour this morning. Hubby has been having what we think are reactions to his injections. One of the main ones that shared solutions kept asking about is almost an anxiety attack feeling. His first one was a few weeks ago when we were shopping. He flushes and feels light headed, he feels sick and his chest gets tight like he's having an anxiety attack. They always said if it happens he is suppose to sit down and breathe through it. Well, it's not so easy we are learning. They are only suppose to last up to 10 minutes and he has had a few that are almost 45 minutes. Combined with all of the other symptoms, I am not liking this. There is nothing I can do, all I can do is watch and be there. Last night was by far the worst experience so far. I say so far because I am learning that I don't know what to expect. I have to roll with things and I hate it. 

I am thankful he's home this week, because last night he gave himself an injection, and within a minute or two he sat back in the chair and started saying he couldn't breathe. He flushed and got hot, his chest got really tight and then the pain started. Before I knew it he was almost screaming and was in excruciating pain. His back was spasming. I tried to help him forward but he dropped to his knees and was gripping the chair it hurt so bad. It felt like forever but it went on for about 5 minutes before he was able to get a handle on it. Once the spasms stopped he was left feeling beyond exhausted, had a headache and felt pretty awful. The only positive was that it wiped him out so bad that he fell asleep right away and was actually able to sleep through the night which hasn't happened in a long time. 

So, where does this leave us? I have no idea. Is this a medicine reaction? I don't know. Does he need to get off the Copaxone injections? Potentially but then what? I hate this. I hate it I hate it I hate it! The unknown is what makes me crazy. I can't stand seeing him in pain. It completely breaks my heart because there is nothing I can do to take the pain away. 

Hubby is going to call shared solutions and see what they say. Maybe this is injection reaction and maybe this is just the MS not being managed as of yet. Like I said in the last post, we head to the neurologist on the 2nd and hopefully we can try for some more answers. Until then I hope and pray that the spasms don't continue. 

Do you ever feel like you are holding your breath? I sure do right now

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! 

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!