MS Caregivers Unite

Miss me?

2011-04-28T10:59:00.000-07:00

Hello there MS caregivers of the world! It seems I've been gone so long that my blog background has been removed from the site where I got it! I'll get to fixing that eventually.

The last time I posted, I was pretty low. Down in the dumps. Blah. But no more. Things have been happening, as things tend to do. And I've managed to crawl out of my own depths of despair.

In fact, things are good.

Why? Well, there is no one reason, really. That's the thing with depression. Sometimes things are good; sometimes things are just bad. You can be positive, try to be in a good mood, and focus on the good things in life, but still be depressed.

But I do know one thing that has helped: Building myself up. Yes, it's hard. But do it anyway. Tell yourself you matter. You're worth it. You're a FIREWORK!

As caregivers, we tend to forget about ourselves. And I'm not just talking about caregivers of the sick. Caregivers of children do this too. Whether you are a mother, aunt, grandmother, etc, we as women tend to do everything for others and take care of ourselves last, if at all. This has to stop. We are no good to anyone if we aren't around! And after many years of neglecting myself, I am finally learning that this is true.

I challenge you to do something for you today. Give yourself a pep talk in the mirror. Go for a walk. Treat yourself to lunch at a nice restaurant i.e. NOT a drive through! And do it for you.

Take care,

Mrs. M

why?

2010-05-01T20:01:00.000-07:00

I've been pretty cranky today. Last night, my little girl had to go to the ER for what everyone thought was either appendicitis or a UTI. No one thought I should wait until Monday, so I went. It was 10:30 pm. Mr. M and my other little girl stayed home and went to bed. We got checked in and then waited for our turn. The wait wasn't too long, which I was pretty happy about, seeing as I had been awake since 5:00 am that morning, taking Mr. M to Miami. Let's just say I was pretty exhausted and did NOT want to spend the night in the ER.

Well, we ended up coming home at 2:30 am. I was wiped. She turned out to just have an ear infection, so I guess it was a "better safe than sorry" trip. I fell into bed and was pretty sure that Mr. M would take care of things in the morning for me, since I was SO tired. I was wrong.

Sure, he got up a couple times to help the girls with a couple things, but as soon as he was done, he plopped right back into bed. The kids kept coming into our room, crying, whining, and needing something, and I really hate to just lay there when I know Mr. M will tell them "just a minute" and never get up. So I got up. I took care of my little peeps, and then I got mad at Mr. M. He knew I was tired. He knew I had been out all night. Still, he was more tired, and he couldn't get up.

Sometimes I think that I should just take it, and not complain so much. I am the mom, after all. Isn't it my job to take care of the kids, the house, and everything else all by myself? We often fight about how other moms do it-why can't I? But they don't walk in my shoes. And for whatever reason, no matter how hard I try, I am just not that person.

Then I think, "Why am I still here?" "What am I getting out of this relationship?" I feel like all I do is drive Mr. M around. I take him to school, I take him to the doctor. Then I take myself to school, do my homework, clean the house, do the shopping, cook the food, and take care of the kids. I feel empty physically, emotionally, and spiritually. I feel like he does nothing to fill any of those voids. I always thought that relationships were supposed to be a two-way street, but I feel like ours is one-way.

I don't mean to come down on him. He does help me occasionally. So why do I need more? For whatever reason, the little things that he does do just isn't enough for me. Maybe I am the bad guy. Maybe I need to be more understanding. Maybe I am a sucky caregiver. I love him. I care about him. But sometimes it is so hard when I feel all alone in this. We are currently looking for a marriage counselor. I think it will do us some good.

it's not my fault.

2010-04-21T18:49:00.001-07:00

It's no secret around here that I have been seriously depressed. It's also no secret that I am trying like hell to stay positive and make the best of my life. Lately I've been realizing some things about myself. Things that I used to see, but somehow got clouded along the way. Like how smart I am. Yes, me. I'm actually pretty smart! I mean, I already have a BA degree, and now I'm working on getting a nursing degree. Smart, right?

It may seem stupid, but I really have had a hard time believing in myself. And I couldn't figure out why. My self-esteem used to be much, much higher. People used to accuse me of being conceited. I'd tell them I wasn't; that I just had a really good self-esteem. And I think that that is important.

So the other day I was looking at the VA website for people with MS, and came across a section just for caregivers. I read through it, and immediately felt a little better about myself. I realized that being a caregiver means that before you can care for someone else, you first have to take care of yourself. (Ok, I already knew that, but it's easy to forget.) And I have a confession to make--I have NOT been taking care of myself. FOR. A. LONG. TIME. I always put everyone else first. My kids, my husband, even the cat! I eat the kids' leftovers, buy myself clothes only when I absolutely HAVE to, and don't even put on makeup half the time. I leave the house with wet hair, never styled. I don't give myself any "me time."

Fellow caregivers, I have been in the WRONG.

As a caregiver, you simply have to take care of yourself first. If you don't, you will in no way be able to take care of your loved one. You need rest, exercise, alone time, and you need to reward yourself on occasion. I have let myself go. I am now overweight, with high triglycerides, and on the brink of having fatty liver disease. I am always sick with a cold or cough. I am always tired. For years I have been blaming myself, but now I see that while it was me that did this damage, it is not my fault. I was putting everyone else first. My self-less acts turned into my stresses, which have now turned into my own demons. Don't let this happen to you.

Now that I have told you the bad, I need to tell you the good. First of all, I have recognized my problems and have made a plan to do something about it. That in itself is an accomplishment. Second, I have started to implement that plan into my daily life. I am going to a Zumba class twice a week. I am eating smarter. I am (slowly) banning sugar from my diet. And I have a friend who is going to hook me up with a new meal program called "Medifast" as soon as I can afford it. I am ready to fight this battle and slay my demons. Are you with me?

have you ever seen anyone sleep THAT much?

2010-04-20T09:55:00.000-07:00

Last week, Mr. M had a plethora of appointments at the VA. We're talking three days in a row, people! It was c-razy. One of them was even at 7:30 in the morning, which meant that we had to leave home around 6:00 am. NOT our idea of fun.

But we did it. We went to the appointments, and even showed up on-time. However, by the third day, we were EXHAUSTED. I was tired from driving all over creation, and he was tired because, well, he's always tired. So we missed the appointment on the third day. I had a hard time getting up that morning, but I eventually did. Mr. M, however, did not get up. AT ALL. I tried to wake him, and he tried to mumble something about not getting up, so I let him sleep. I went about my day, and then picked up the kids from school. At that time, I then tried to wake him up again. I figured he'd had enough time to sleep. I was wrong. I got no response from him. I began to get a little annoyed, as I often do when I am left to watch my husband do nothing but sleep. But I realized that we had both had a rough couple of days, so this time I let it go. That night, Mr. M finally emerged from his slumber, just long enough to eat some dinner and use the bathroom. Then it was right back into bed! "HOW can you STILL be tired?!" I exclaimed. He just was. So I figured I'd spend the evening alone (after those kiddos went to bed, of course) and hopefully do something fun the next day, which was Saturday.

I woke up early with the kids. We ate breakfast and watched some Saturday morning cartoons. Around 11:00, I realized that we hadn't seen or heard anything from the daddy. I went to check on him. (Snore, Snore) He was still sleeping. I asked him if he was going to get up today. He said "maybe later." "Oh." I was sad. I had planned on cleaning and rearranging the house a week ago, and never got to it, and now that it was Saturday, I finally had my chance, so I took it. I cleaned and cleaned and cleaned. It's amazing how dirty/cluttered your house can get when you are NEVER home! I threw TONS of stuff away-kind of like Spring Cleaning. Then I started to tackle the furniture rearranging. I couldn't do it. I just wasn't strong enough. I needed Mr. M's help. I tried to get him up. He wouldn't move. I begged, I pleaded, but still nothing. So there I was, house mostly cleaned up, with the furniture spread out everywhere. I finally just gave up. And you know what? Mr. M did NOT emerge from his bear cave. Never have I seen him so tired. Never has he slept all weekend long. (Well, maybe he has, and I just don't remember it.) I blame the VA, as I like to do, (you know they are a blessing AND a curse). The ones who are supposed to be helping him are often his accomplices in pain. Oh well. What can you do?

I still don't see how anyone can be that tired. I don't think I ever will. I've spent nearly 10 years trying to understand MS. Maybe I never will. Maybe that makes me a bad caregiver. Sometimes I just get so wrapped up in the "It's Not Fair" campaign. I try not to. I know that only makes me depressed, and I truly do have so much to be grateful for. But sometimes I can't help it. I am, after all, only human.

what's new?

2010-04-13T09:15:00.000-07:00

I have been super busy lately, which unfortunately has led me to neglect my blog. But there are still things happening in our world of MS.

TYSABRI: Mr. M's infusions are going well. The last time we went, the whole process seemed faster than normal. Maybe it was because we got there a little earlier than normal?! Mr. M is supposed to take Benadryl before his infusions, just in case he has an allergic reaction to the medication, but he forgot this time. Fortunately, nothing happened. The grouchy, yet highly skilled doctor that has kicked me out of the treatment room in the past has also been really nice to me. I have been able to stay with Mr. M without any problems, and she is even joking with us! Maybe she was just having a bad day before.

SOCIAL SECURITY DISABILITY: We have finally mailed in the 5,000 page document required for us to retain our attorney. Now, we wait.

WHEELCHAIR: Right now Mr. M uses a manual wheelchair. Why? Because, while he was given an AMAZING power chair courtesy of the VA, we are unable to use it. Why? Because the dang thing is HUGE! We have a minivan, and while the VA has approved us for a conversion, the chair that they gave Mr. M is still too big and heavy for a minivan. In order for him to use it at all, we are going to have to purchase a full-sized van AND raise the roof and drop the floor!!! Can you imagine???!!! Well, with the economy being the way it is, and gas prices being the way they are, there is NO WAY we are going to be able to purchase said full-sized van. Our solution? Request that the VA give Mr. M another power chair. One that is smaller and that meets the needs that he has currently. His chair that we have now is a full rehab chair--one that he hopefully will not need for many more years. As for now, the mother-of-all-power chairs will continue doing what it has been doing for over a year-sit in my tiny apartment and act as a bookshelf/coat hanger/place where the cat likes to sleep. Oh, are you wondering why he can't just keep using a manual wheelchair? Because he has had shoulder surgery in the past, which has never properly healed. Because he also has bursitis in his shoulders and it is extremely painful for him to wheel himself around. Because he has MS and wheeling himself around gets pretty tiring. It's just not practical for him. I want him to have as much freedom as he possibly can, while he still can. And a smaller, yet capable power chair would give him that.

PAIN IN THE NECK: Literally, Mr. M has enormous amounts of pain in his neck. And back. And down his spine. For as long as we can remember, he was always told that his pain was due to depression, and that once we got his depression under control, we would be able to get his pain under control. Not so. His wonderfully brilliant neurologist that we see in Miami has been looking after him, because she is in charge of the Tysabri infusions. She is not considered to be his regular neurologist, and we are still putting up with the one we don't like in West Palm Beach, but she still has to see him every few months, aside from seeing him in the chemo unit. Her last appointment with Mr. M revealed what we had thought all along-that his MS was in fact causing him constant pain. There is even a name for it, but I can't tell you because we had the kids with us, so I was in the waiting room and Mr. M forgot the name. But that is not what matters. What matters is that his pain is REAL. He is not making it up, nor is it all due to his depression. Mr. M told me that the doctor knew exactly where to push on his spine to find the pain. And when she did, he said it felt like he was being stabbed with a knife. I can't even imagine being in constant pain, with no relief. He has never been given any narcotics or pain killers. He has just had to suffer. No wonder he sleeps all the time! hahaha But seriously, the doctor has finally given him something that is not a narcotic, but rather is supposed to get into his system and work with his body to kill the pain. It is called Gabapentin. However, this drug has a nasty side effect of...you guessed it...fatigue! Will we ever be rid of the fatigue?! It seems to rule our lives. But I suppose being fatigued with no pain is better than being fatigued and in pain. I'll let you know how it goes.

Well my faithful readers and strange friends speaking an unknown language, I bid you farewell. Until next time...

where have i been?

2010-02-20T04:24:00.000-08:00

Well, I've been depressed. The overwhelming feelings of moving 3 months ago, being sick, going to school, having no money, and being a caregiver were too much for me to bear. But I am feeling better and am now trying to get back on track. (At least emotionally, that is. I now have a nasty sinus infection after having a nasty stomach flu earlier this month. Does the sickness ever end?!)

In the meantime, we have successfully completed yet another round of good old Tysabri in Miami, hired lawyers and been officially accepted as clients for getting Social Security Disability, and found some new therapy (the psychology kind) options for Mr. M. Things are looking up.

I am managing straight A's in school, and have even unpacked more boxes and organized a little more. Yes, things ARE looking up.

P.S. I am now going to have to pre-approve all comments, as I have been getting weird Chinese? ones, which translate to things such as "toilet" or "bathroom" when I use an online translator. Weird, right?!

slump.

2010-01-26T10:03:00.000-08:00

Ever feel like you're in a slump? I do. I have so many reasons to be happy-I have a loving husband, beautiful children, a super-silly kitty, the list goes on and on. But I'm not happy.

UPDATE: I never finished this post, thus the lack of "content." But I think it is important to save for posterity. I need to be able to look back and see how far I've come. And I need to remember that it's okay to have slumps. Everyone has good days and bad days. So if you're reading this and you feel like you are in a slump, remember that "this too, shall pass."

miami.

2010-01-09T14:51:00.000-08:00

Yesterday we made the long journey to the Miami VA. Boy, was it long. We left home at 6am and didn't get back into town until 6pm. Mr. M was of course, unable to drive, so I had to do all the driving and was completely exhausted. The last time we went, I was allowed to sit with Mr. M, and relax and prepare for the drive home. This time however, they decided that I was not allowed to stay, so I was left to wander the hospital alone. I tried to study, but the cafeteria got too loud when lunchtime rolled around. There were waiting rooms, but the chairs were uncomfortable. So I eventually wandered. At least I got some exercise!

I did visit Mr. M every so often, to see if he needed me to bring him some food or a drink, and just to see how the infusion was going. I may have mentioned before that the second infusion is usually the scariest, because Mr. M can have an allergic reaction to the medication. But things went well. He did have high blood pressure, which concerned the doctor, but it did go down, and they eventually let me stay the last half hour of the infusion. That was a blessing, because I got to sit in a big, squishy recliner and took a nap! After that, I felt much better.

There were some other complications that bugged (the VA always has complications that bug), but other than that things went well. In fact, two good things came out of this visit.

1. We were able to get a Spinal Cord Injury patient parking sticker. Sure this seems trivial, but we were happier than ever to get it. Parking at the Miami VA is a complete nightmare, even if you are handicapped. But not every person who is handicapped has a spinal cord injury, which MS patients are considered to have, so we were eligible for a "special" handicapped parking spot. Hooray! This means no more driving around aimlessly, hoping that someone will leave so that we can get ANY kind of parking spot.

2. Mr. M's new neurologist, who resides at the Miami VA, and who I just LOVE, agreed to help us get Social Security Disability for Mr. M! What a blessing! His grumpy neurologist in Palm Beach, intelligent as she may be, does not have the bedside manner that this woman has. We tried to get a letter from her in the past, and she actually refused. But now we have someone on our side. This is the third attempt, after all. Now we just have to convince the lawyer to take our case. The one we originally found had to refer us to someone else, and they never called us back, so now we are stuck with a nation-wide firm, who hopefully has time for us.

Things are still hard, but every now and then things seem to look up. I know someone on the other side is watching out for us.

on the road again.

2010-01-07T17:31:00.000-08:00

Tomorrow we will be travelling to Miami so that Mr. M can get his second dose of Tysabri. Details of the trip to come...

does the journey seem long?

2010-01-03T17:57:00.000-08:00

I heard this hymn today and was uplifted.

"Does The Journey Seem Long?"

Does the journey seem long,
The path rugged and steep?
Are there briars and thorns on the way?
Do sharp stones cut your feet
As you struggle to rise
To the heights thru the heat of the day?

Let your heart be not faint
Now the journey’s begun;
There is One who still beckons to you.
So look upward in joy
And take hold of his hand;
He will lead you to heights that are new.

Thank you, Heavenly Father. It was just what I needed.

happy new year.

2009-12-31T19:41:00.000-08:00

Happy New Year, 2010.

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

the blame game.

2009-12-31T19:26:00.000-08:00

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.

2009-12-21T08:21:00.001-08:00

"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.

2009-12-20T13:56:00.000-08:00

**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.

2009-12-14T18:26:00.000-08:00

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.

2009-12-10T16:49:00.000-08:00

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.

2009-12-07T17:08:00.000-08:00

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.

2009-12-05T06:55:00.000-08:00

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.

2009-12-02T14:40:00.000-08:00

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.

2009-11-30T19:25:00.000-08:00

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.

2009-11-24T17:25:00.000-08:00

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.

2009-11-22T09:38:00.000-08:00

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.

2009-11-19T07:19:00.001-08:00

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.

2009-11-15T11:56:00.000-08:00

(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.

2009-11-13T17:53:00.000-08:00

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.

2009-09-29T19:45:00.000-07:00

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.