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!