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!"