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?