why?

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.

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?

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?

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?

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.

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.

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.

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?

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.