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.