happy new year.

Happy New Year, 2010.

May this year bring us one step closer to finding a cure for MS.

the blame game.

Man, have we been at each other's throats lately! The kids have been rotten, which never helps, and in the season where you just want to spend money, not having any makes it really hard. Mr. M's bi-polar mania is so out of control. He thinks he needs new clothes, Ithink he doesn't, since he never goes anywhere or does anything anyway. It's frustrating. Mr. M loves to shop, which is cool, but he doesn't know when to stop.

We got into it big-time last night. I was awful. He says I know exactly which buttons to push to make him feel horrible, and he's right. I felt awful, and I deserved to. I know it is not his fault, but I blame him for his problems. I blame him for "ruining my life." He blames me for not understanding. No one wins in this blame game.

It takes so much PATIENCE and UNDERSTANDING to care for someone with MS. Those are two virtues that I am not the best at, but I am working on it. I saw a quote on someone else's blog today that I want to share:

"Everywhere in nature we are taught the lessons of patience and waiting. We want things a long time before we get them, and the fact that we want them a long time makes them all the more precious when they come."
~Joseph F. Smith

One day things will be better.

keep moving forward.

"Meet the Robinsons" is one of my favorite movies. This morning, my girls wanted to watch it, so I sat down with them. We made french toast with pumpkin pie spice instead of cinnamon, and it turned out great! After we filled our bellies, we started the movie. I've seen it before, but this time a phrase stuck out-

"Let go of the past and keep moving forward."

KEEP MOVING FORWARD is the main theme in this film. And I believe in it. We, as caregivers, will have bad days. We will want to give up. We will want to give in. But we must KEEP MOVING FORWARD. So, for today, that is my motto. I am going to play with my children and be happy.

I am going to KEEP MOVING FORWARD.

enjoy yourself.

**NOTE: If you are also a reader of my personal blog, this post is the same as the one on there. I felt it pertained to both this time.**

A few days ago, we was eating at Szechuan Palace, one of our favorites. We were tired and the girls were grumpy, but it was so late that we just wanted to eat something decent and quick (not fast food) for dinner before we went to bed. We happened to be seated in a corner of the restaurant where we have never sat before. In this corner, there was a little sign that said "Enjoy yourself. It is later than you think." At first I thought it was talking about drinking and how the drinkers should hurry up before the bar closed, but as I continued to eat my yummy deliciousness, I kept thinking about that sign. My eyes kept returning to it, reading it over and over again. And I came to the conclusion that it was in fact NOT talking about alcohol. Instead, it was talking about life. MY LIFE.

I have been glum. Since before Thanksgiving, I have been fighting depression. Some days are good, others not so much. Lately it has been hard to fight it. I sit at home and watch Mr. M sleep, day in and day out. I feel hopeless and helpless. Our closet collapsed a few days ago, so there was a whole other mess of things to add to the already covered floor. Our new apartment is just too small for us. But there is nothing we can do. We have gotten rid of most everything that we could. When we finally called maintenance to fix our closet, I was left alone to move EVERYTHING out of the way so that the job could be done. It made me sad. It made me feel overwhelmed. I wanted to just throw it all away. I actually got down on the floor and cried. I begged Mr. M to get up. I felt like a two year old throwing a tantrum. It was ridiculous, I know. The cat came over to see if I was ok, then I got up and started to try and clear out the closet. Mr. M would not get out of bed, and I had to put everything somewhere, so I just piled it all on the bed on top of him. Then I started bagging things up. I was going to throw things away. But just at the last second, when I thought I couldn't take anymore, Mr. M got up and helped me. Maintenance soon came, and I took the girls and left the house. It felt good to get away with just them.

Back to the sign.

Seeing those words made me realize that I don't have forever to be happy. It is later than I think. Time on Earth is short. We know that. It should not be wasted feeling angry or sad. We should find "joy in the journey." This is hard to do. But at least I have recognized that I need to try and find some happiness, even if it is just a smidge, each day. Life is too short to be depressed all the time.

I don't know where that sign came from. Perhaps my great-grandfather put it there (he is known for his "trinkets") or maybe it is something that the restaurant owners found. Either way, I am grateful that it was there to lift me up. Thank you, little sign.

a touchy subject.

Although this is something that bothers me and I feel the need to talk about it, Mr. M does not want to hear one word. And I understand. It's just that it breaks my heart to see it happen, then comes anger, then sadness. And I don't know what to do. At this point, I'm pretty sure that nothing really can be done. Just understand that as MS affects certain parts of the brain, those corresponding parts of the body are also affected. For example, it can be the legs, the lungs, the heart, the arms, the ability to swallow, or the bowels.

As members of The Church of Jesus Christ of Latter-Day Saints, we believe that we will one day be resurrected and have perfected bodies. I have always known this principle, but it wasn't until this year that I truly realized what it meant for me and for my family. We believe that families are eternal. Mr. M and I were married and sealed for time and all eternity in an LDS Temple. Because of this, our children are automatically sealed to us as well. We can be together, as husband and wife, forever.

The knowledge that Mr. M will EVENTUALLY be whole brings me great peace and hope. Of course it is hard to remember at times, when things get really tough. That is why I am reminding myself RIGHT NOW that one day, when our lives on Earth are over, my husband will be healed. We will have our lives back. Things will be normal.

EVENTUALLY.

how to avoid caregiver burnout.

Being a caregiver can be really HARD. Some people might wonder, "How can caring for someone you love be hard?" It just is. As a caregiver, you get tired. You ask, "Why me?" You wonder if things will ever be "normal." Oftentimes, you forget about yourself, which, while selfless and Christlike, can also lead to the downfall of the caregiver. The disease goes much further than the patient. It affects the whole family, in many different ways.

At one time or another, I have had all of these thoughts, and more. I have let myself go. I don't believe in drinking, smoking, or drug use, so when things get hard for me, I turn to food. But really, food can be just as harmful as any of the above. Luckily, I have recognized that fault in myself and am now working to correct that situation, but I have gained a significant amount of weight in the meantime, which I am going to have to work off. That is going to be hard, too. It is unfortunate that I didn't find another way to release the stress that I was feeling. For that reason, I am writing this post. I am hoping that somebody out there will read this and know that they are not alone.

There are many resources available for caregivers of all kinds. Since I am a caregiver for an MS patient, I am going to focus on that.

1.) The National MS Society-www.nationalmssociety.org-1-800-FIGHTMS
The NMSS is an amazing resource. It is the first one that my husband and I joined when we found out that he had MS. They offer literature, support groups, family activities, and more. Before we moved to our current location, Mr. M and myself went to the monthly support group, where we made many friends and were able to talk freely about all things MS. We also attended many family activities, including a baseball game and a trip to a local farm. The NMSS also puts on the MS Walk, one of the biggest fundraisers for MS research. We have participated in the walk twice, and one year I won an award for being one of the top fundraisers!

2.) The Multiple Sclerosis Association of America-www.msassociation.org-1-800-532-7667
Like the NMMS, the MSAA is also a non-profit organization that is dedicated to "enrich the quality of life for EVERYONE affected by MS." They have a magazine called The Motivator, which always has tons of helpful articles for the patient and the caregiver. Their website is also a great place to visit. There you can find "lifelines" to help you, such as an 800-number that you can call for help or reassurance, a lending library, and a list of support groups.

3.) The Multiple Sclerosis Foundation-www.msfocus.com
This website offers a list of support groups and ideas on how to get help. They are also offering a CRUISE for people with MS and their families in the year 2010. The trip is a bit pricey, but if you can afford it, it looks like it would be a great way to relax amongst other people dealing with MS. During the cruise, educational lectures are offered for the patients and their families.

4.) Your local library
Your local library should have several resources, such as self-help literature or even groups that meet there weekly or monthly. If a certain book is not available at your specific library, you can ask to do an inter-library loan, which would allow your library to borrow the book from another library, and then lend it to you.

5.) Meet with your Bishop, Pastor, or Clergy
One of the best people you can talk to is someone who shares your faith. They can give you insight and uplifting messages that are sometimes all you need to feel better. Many are sworn to secrecy, so you shouldn't feel like they are going to share your problems with anyone. Even if you are not a church-goer, these people are usually willing to lend an ear if you need someone to talk to.

6.) Do something for yourself
Whether it be going out with friends, going shopping or going to the movies, or even just taking a drive, be sure that you do SOMETHING for yourself at least once a month. This will give you "away" time, a time where you can focus on you and not feel guilty about it. Exercise is also a great way to relieve stress, and you will feel better about yourself if you can commit to doing it.

Whatever it is you decide to do, be sure that you do it for you. Your loved one is of the utmost importance to you, and if you wear out, who will take your place? By taking care of yourself, you are taking care of your MS patient.



**DISCLAIMER: I am not a doctor. The above information is to be used at your own risk. The things that I have listed are partly my own opinions that I have formed from experience, and partly from the above mentioned websites.

update: the red, red rash.

I forgot to mention something about Mr. M's red, red rash. While we were at the Miami VA, I decided to ask the brilliant neurologist there what she thought about his rash. She had an idea. (Did I mention she is BRILLIANT?!) Her thoughts:

NIACIN.

Now how easy was that?! She was pretty sure that it WAS an allergic reaction, and the Niacin that Mr. M takes for his cholesterol was her first choice in culprits. Her second was Depakote, but she said the symptoms sounded exactly like a reaction to the Niacin. I am so GRATEFUL to have met this woman. She is just the woman I want for my husband's care.

tysabri.

Mr. M has decided to take Tysabri, a newer MS medication that was at first approved by the FDA, then pulled off the market, and is now back on the market. He was on it once before, but it became too expensive for him to continue the therapy. But since Mr. M is a veteran, he has the privilege of getting all of his health care done at the VA. This is both good and bad. Good, because his health care is free,and as many of you may know, MS is an EXPENSIVE disease. Bad, because we have to drive to the Miami VA once a month in order to get this medication. In the past, we have been charged $5000 a month for this treatment, but now that Mr. M is using the VA, we are able to get him the treatment he wants and needs.

Yesterday we made the long, long trek to Miami. It took us three hours and we saw a total of 5 car accidents, 2 of which were cars that had flipped. It was pretty scary. We had to be there by 9:30 am, so we left our house at 6:00, dropped off the kiddos, and went on our way. We arrived by 9:15, but parking was TERRIBLE, so it took almost 30 minutes to find a place to park. We eventually made it in, and started the process for his first treatment.

Tysabri is considered a biologic therapy, but must be administered in the chemotherapy department of a hospital, by a specially-trained nurse who has been "TOUCH" certified by Tysabri (the company). We spent an hour filling out paperwork and talking with the doctor, and then waited some more while the pharmacy mixed up the medication and brought it to us. (The medication does not last long once it has been mixed up, so the patient must be in the chair waiting for it before the pharmacy will mix it.) Then Mr. M was given his IV and the Tysabri drip began. The drip takes about one hour, but the patient must wait for another hour afterwards, just for observation. We finally arrived home by 5:00, and overall everything went pretty smooth.

As with any medication, there are some risks associated with Tysabri, which both Mr. M and I have fully considered. The biggest risk is an infection in the brain, called PML, that can develop while taking Tysabri. But his doctor is going to be monitoring him monthly and we are hopeful that he will not contract PML. His doctor is a genious. She is so smart, and deals only with MS and Tysabri, so she is pretty much an expert. She has a wonderful bedside manner and is so personable. We just love her. I only wish we had met her sooner.

**If you would like more information about the drug Tysabri, click here:

http://www.tysabri.com/tysbProject/tysb.portal/_baseurl/threeColLayout/SCSRepository/en_US/tysb/home/index.xml

insomnia.

Mr. M is such an insomniac! He hasn't been able to sleep for the past few nights, and last night he was up all night long. It's not the first time he has done that, and it probably won't be his last. Sure, his doctors give him sleeping pills for this exact reason, but he hates to take them.

First of all, he is already taking too many pills. Second, he always gets a "hangover" when he takes most any kind of sleeping pill. (He has tried many different kinds.) Of course he could always take an over-the-counter sleeping pill, and those have worked for him in the past, but they don't always work, and if he takes one of those then he can't take a prescription one. Othertimes he just doesn't want to take them. He hates taking so many pills. I think sometimes he is hopeful that he will eventually fall asleep on his own. Many times he does, after several hours of trying. Then of course, he is completely exhausted during the day. So he is fighting his MS fatigue along with his insomniac fatigue. Thus we have a vicious cycle. And you know how I hate to watch him sleep. It is all so very frustrating.

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.

welcome.

Hi! Thanks for checking out my blog. My name is Mrs. M. I am starting this blog for many reasons, but mostly because I want to connect with other caregivers out there. You see, I am an MS caregiver. My husband was diagnosed with MS in 2001 and I have been his caregiver ever since. Like many of you, we have our story about the diagnosis, the struggles that came with it, and now the daily grind of living life with MS. But I will save our story for another time. Right now I just want to get myself "out there." I hope that you will find my posts interesting, helpful, and enlightening, because let's face it-when you are dealing with MS, you need some enlightenment every now and then. It is HARD, not just for the person with MS, but also for their loyal caregiver. Oftentimes I survive on my faith alone to get me through. God has helped me through so much thus far and has never let me down. I am THANKFUL for that. Please join me on this journey, as I strive to look for the meaning in all of this, as I strive to make peace with this horrible disease. I think I can learn a lot from you and maybe you can in turn learn something from me.