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!