return of the red, red rash.

Well, it happened again. That red, red RASH made its ugly appearance last night! I took pictures, but the photos just don't do it justice. Poor Mr. M looks awful in them too.



His face looks swollen. The white patches that you see on his chest are places where the rash hasn't affected his skin. Yes, he is usually that white!



Just keep this better image of him in your head, ok?



So, he had the burning, hypersensitive sensation, along with the droopy, "old man" face. Weird, right? Oh-and he saw his neurologist. Guess what she said..."I don't know what it is. You could stop taking one pill at a time to see if it was an allergic reaction." (Yeah, I don't think it is an allergic reaction!) "You could drive to the ER the next time it happens and see what they say." (Umm, first of all, we are NOT driving over 75 miles each way to the VA hospital. Second, if you don't know what it is, what makes you think they will? All they will do is run your typical ER tests and find nothing, and therefor do nothing. NOT worth it.)

Ugg. Can you tell the VA drives me crazy?! THAT is a whole other post entirely! So again I will say, if you have ANY idea as to what this may be, please share!

bitter.

Today I have felt so angry. Mr. M went to bed before 9:00 last night. We usually spend time together at night. It is our time to be alone, without the kids running around. We talk, watch TV or a movie, and just enjoy each others company. But on the days when he is extra tired, he goes to bed early. I should be grateful that he went to bed after 8pm. There have been many times where he has been so exhausted that he couldn't even make it to dinner. Still, I was being selfish and wanted more time with him last night. One of my biggest problems I have with his fatigue is that I feel lonely when he is asleep. I feel like the dreamworld gets to see him more than I do. Mr. M is fully aware of how I feel, and last night he promised me that he would wake up early this morning and help me with some errands.

But when morning came, he couldn't do it. Again, I was left alone. Again, I was promised that he would be there for me, and he wasn't. I took the girls to school, hoping that he would be able to get up when I got back. Instead, I said some hurtful things to him and went on my way. I felt like crying, but I had to be somewhere public, someplace where people knew me and would ask what was wrong. So I held it in and kept my sunglasses on, just in case. Sometimes I hate living like this. I wish my life was more "normal." I wish my husband was healthy.

Today I have been so bitter. I know I have so much to be thankful for. I am blessed to be a wife and mother. I am blessed to know that there is a God, who loves us, cares for us, and provides for us. And I have been blessed with wonderful friends. As the Thanksgiving holiday approaches, I am going to try and focus on the good. I know it helps to keep a positive attitude, but sometimes it is hard. I need to remind myself of the wonderful blessings that abound in my life.

the fatigue monster.

Fatigue. Exhaustion. The feeling of being so TIRED that you simply cannot get out of bed, no matter what you do, no matter how hard you push yourself. This is how Mr. M ALWAYS feels. And it drives me crazy.

When he was first diagnosed, Mr. M suddenly became tired. ALL THE TIME. We were still newlyweds, and this behavior hit me hard. He was too tired to do anything. I was bored out of my mind, waiting for him to wake up so that we could do something. Anything. Talk, go out, anything was better than waiting for him all day. One of the biggest things that bothered me about MS was the fatigue. It changes a person. My sweet, adoring husband was a different man. Different from the one I had married. I was so devastated with his diagnosis, it put me in a deep depression. But I allowed it to. I wasn't as strong then as I am now, or maybe I always was, but I had to go through that trial to realize my inner strength.

Today is one of those days. He can't get out of bed. But sometimes I wonder if he just doesn't try hard enough. I feel like I am always trying. Trying to understand his pain, his depression, his fatigue, his mental faculties that he has lost. When I see him, lying in bed, it makes me angry. I feel like everything is up to me. I have to take care of the house, the children, the bills, everything. And all he does is sleep. But I know that that is the nature of the beast. I miss the support groups that we used to have where we once lived. Here there is nothing.

He has tried all kinds of medications in hopes that he could fight the fatigue more easily. Provigil, Dex, Ephedra, B-12 vitamins, 5 hour energy shots, and caffeine. Nothing seems to really work. Provigil is supposed to be one of the best meds out there, but it stopped working for him. Even his new drug, the Dex, doesn't live up to our expectations. It's almost as if this monster is unstoppable. How do you fight it? I don't think you can. I urge him to take his medications everyday, in hopes that they will work, that he will muster up enough energy just so he can get out of bed. But they don't always help. This is why he can't work. This is why he needs social security. This is why I am going back to school, to support our family. This is one of those days...

"miracle" cures for MS.

Have you ever heard someone say "I took (latest product) for my (arthritis, snoring, MS, Parkinson's, etc) and now I am CURED!"? I have heard people say such things about bee-sting therapy, Tahitian Noni Juice, Xango Juice, Mona Vie, Pain Stop, Juice Plus, and various vitamins, herbs, and supplements.

Ever since Mr. M was diagnosed with MS, we have heard countless stories about countless products that are said to "cure" MS. And honestly, Mr. M has tried some of them, but both of us are skeptical enough, rational enough, and logical enough to know that MS can not be cured by anything. I do believe that it is possible that some of these products can help with certain symptoms or with your health in general, but I do not believe that they can "cure" anything. That being said, I still wonder about those people who claim that they have been helped/cured by such products. I don't think that they are ALL a bunch of liars who are in it for the money, and if that is true, then how does this all work? What are some of the products that you have tried? Did they work? Did they help you at all, or were they all a waste of money? Please share your experiences with me.

***DISCLAIMER: The products themselves have not necessarily made these claims, rather people who use and/or sell the products as part of a home-business are the ones who have made such claims. I am not endorsing the products, nor am I discounting them.***

red, red rash.

(For an interesting article on the diversity of snowflakes, go here: http://www.msnbc.msn.com/id/10839319/)

MS is a funny thing. It is known as a "snowflake" disease because no two patients are alike. Symptoms vary from numbness, to vertigo, to hypersensitivity. Some patients are in wheelchairs, while others are running marathons. Some have relapsing-remitting MS that lasts for years, while others quickly go from relapsing-remitting to primary progressive or secondary progressive MS. Because of the wide-variety of symptoms and effects that MS has, doctors can have a hard time deciphering what to do when something arises.

For example, Mr. M has been on the receiving end of a nasty red rash for about a year now. It comes and goes, especially at night, so we are never able to show it to anyone. We have taken pictures, but it is hard to diagnose from a camera. We have shown them to his primary care doctor, but she referred us to his neurologist. And since the VA is as it is, we will not be seeing her until later this month. So as you can imagine, we are anxious to find out what it is, if she even knows. I will definitely post more on that later if/when we know more about what's going on.

So, as I mentioned, the rash comes and goes, and ALWAYS happens at night. This in and of itself is extremely bizarre. We thought that he was having an allergic reaction to one of his medications at first, but his primary care doctor assured us that it was not. The rash also has a pattern. It starts at the top of his head and neck area, then progresses down his body, going all the way to his toes. And it burns. His skin turns bright red, and sometimes his face looks swollen or droopy. Sometimes the hypersensitivity is so great that he can't continue to lie in bed with the covers on. It is all so strange. If anyone has seen or heard of this before, I would love to hear about it. Hopefully Mr. M's neurologist will have some answers for us. If not, I guess we will just keep searching and he will just keep on enduring.

denied. twice.

Have any of you tried to get social security disability? We have. Twice. Both times my husband was denied. Both times, their reasoning was that his "condition" was thought to not last longer than 12 months. Huh?! They also suggested jobs that THEY thought he could do, like we hadn't thought of them before! Seriously. WHO makes these decisions??? I don't understand it. I see what my husband has to go through on a day-to-day basis. THEY get my husband evaluated by some random doctor who doesn't know anything about my husband's health history. For all we know, those doctors might not even be fluent in the symptoms and devastating affects of MS. But that is how it is done. If there is anybody out there who knows of an MS patient who has actually been approved for social security disability, I'd like to hear about it.

As for us, it's not like we are just trying to get "free" money. I know that there are people out there who do that, but we are not one of them. My husband worked for many years after his diagnosis, and believe me, he would much rather work than be a victim of this debilitating disease. We have had several conversations about this topic, and he feels more like a failure as a husband and father because he can't provide for his family. I am fine with going to work, but I have to finish school first so that I can get a good enough job that will support us.

It's just all so frustrating. If there is someone else out there who needs it more than us, then fine. I understand, and I want them to have it. But for now we are barely surviving on what little monthly income we do have. And a little extra would definitely help. However, I am truly grateful for what the Lord has blessed us with. I realize that we have more than some people do and I know things could always be worse (though sometimes that is hard to remember when you are debating which bill to pay!). If nothing else, we have each other. And that is what life is all about. Family. Love. Kindness. We believe that families are forever, and enduring to the end is what we are focusing on.