Sunday, April 18, 2010

I Guess I Didn't Need That

Good thing I have MS to play Big Brother for me and get rid of the stuff that I don't need or want anymore, regardless of how I feel about those things. According to my MS, I have been hoarding things that need to go, like my right leg. And both of my knee caps. Also my MS decided I should never forget about the trigeminal nerve on the right side of my face. It hugs my chest exactly where a bra strap goes so I find wearing anything but a sports bra uncomfortable -- it decided that I need a uni-boob because the whole "lift and separate" thing is overrated. Thank goodness it pointed out that a stagger and limp are so much more attractive than a regular walk. Who wants to blend in when you can stagger and be an object of interest to the public?

But MS is also a giver. It helped me start an interesting cane collection and knew that I needed a medicine cabinet stuffed full of drugs. It helped me fill my refrigerator with shots that I have to worry about being broken because that is a lot of money there. But MS has made sure that I don't have any money to worry about, because it is an expensive disease.

MS worries about me getting enough sleep. It worries so much about that that I never have to worry about it because it is there to make sure I get my rest. It never wants me to overexert myself so it put a limit on how much I can do before I become too fatigued. MS doesn't want me to get a heat stroke so it made me turn into a puddle of warm jelly in the heat; a puddle that runs to a cooler place at the first sign of melting.

MS decided that short term memory is too much baggage and tossed it overboard along with my ability to recall words when tired. Luckily I am still able to gesture and do a sort of charade to show people what word I'm trying to recall.

Now MS has decided to make my right arm numb and tingly, to keep my right leg company, I suppose. It enjoys giving me those "electric shocks" up the right side of my body, up into my hair, making my scalp crawl in the grossest way. Until it decides to give me my right arm back -- if it ever does -- I'm just going to have to trust its judgement, regardless of all its bad choices in the past. But we all make mistakes.

Saturday, April 10, 2010

Ain't Gonna Explain Myself To Nobody!

At my exercise class the other day, we were talking about different things we do so the public won't "get the wrong idea." One lady was saying she had read that you should carry a cane so the neighbors don't think you're drunk, and keep a wheelchair in the garage so you can look at it and let it know that you are NEVER going to use it. I like the wheelchair part, but I don't feel like I should have to explain myself to anybody. I told her that I wanted to get one of those root beer bottles and put it in a paper bag to carry around with me and she laughed so hard and enjoyed it so much that she brought me a root beer bottle the next exercise class. And I have every intention of using it. I'm having daydreams of mowing the lawn with it in my hand... driving down the road with it, waving to police officers... going to the lady's house that gave it to me and slurring out, "you ready to go exercise, baby?"

When I was newly diagnosed, I carried a cane and wore my MS shirts all the time so people would know what was wrong with me. I felt like I had to explain myself to the public so they "wouldn't get the wrong idea." I agreed when people told me that I have MS, it doesn't have me. That things could be worse, which I totally agree with, but am tired of hearing. I bit my tongue when people referred to me as "sick" even though it will bring out the evil in me faster than anything else. I was patient explaining all things MS to anyone who would ask. Somewhere along the line I got over my need to explain and the shame in being what I am, and now there is hell to pay!

I enjoy saying, "MS has me" as an answer to what is wrong with me. I am thinking of getting a T shirt that says that for the upcoming MS walk. I correct anyone who has the nerve to refer to me as "sick." I let them know that I am not sick. I have a disease, but I am not sick in the sense that one thinks of sick. I will not carry a cane for any one's benefit. It makes people feel better about themselves if they get the wrong impression and, if nothing else, I am doing the public a service by making them feel better about themselves. I WILL NOT wear my MS shirts anymore because I don't want to give the answer away to those who are uncouth enough to stare at me and try to figure out what is wrong with me. Let them puzzle over it. It's not my problem whether they ever figure it out. Maybe they should approach me with that old stock question, "Whad ya do to yer leg?" Then I will explain that I have MS and watch as their eyes glaze over when they realize that it is a boring answer to the $64,000 question.

Somewhere along the line, you gotta stop worrying about what others' think of you and just worry about what you think of you. And I think I need to start carrying around my root beer bottle.

Wednesday, April 7, 2010

Good To Know

Now that I have Acorn with me, I have been trying to fill her in on all things MS. She hasn't lived with me since my diagnosis and hasn't spent large quantities of time with me since I became such a broken down old gimp. I've been giving her a crash course in all the things she will need to know if she lives with me -- good thing she is such a good listener to my good talker. Among the important tidbits that she needs to know are these gems:

*I'm tired. No, really, I am tired! As the day progresses, I get more tired and need to hold down the couch more and more. By afternoon I will have to balance my activities by rest, get something done, rest, try and do something else, rest, eat as much junk out of the kitchen until I need to rest, rest, I think there is still some peanut butter and cake mixes left... better get on those.

*I can walk short distances without too noticeable of a limp, but anything more than that and I will be dragging my right leg along. And that gets very tiring. I showed her how to do an arm for me the best way. My little sister has it just right; my mom grabs my arm (instead of letting me take hers) and walks so fast I get drug along behind her, great for energy conservation, bad for the knees of my jeans.

*I forget everything. I will forget what I was just talking about. I will forget what you were just talking about. I will ask the same questions over and over again and never remember what the answer was or that I have even asked that question already. I will forget what I was planning for dinner and what is in the pot that is burning on the stove. When I need to remember something, I tell whomever is with me so they won't forget and it will get done. I carry about 5 million little notebooks to write down things so I don't forget and it is VERY important that I carry them all in my purse, which resembles a suitcase more than a purse, and, yes, I must carry everything I own with me at all times. Why do you think I need to drag around my suitcase/purse? I couldn't possibly only take what I need, I must take everything.

*When I push myself too far, which I have gotten very good at listening to my body and slowing down when I feel my strength ebbing but it does still happen sometimes, I need to rest NOW! And it would be nice if you would drop grapes into my mouth while I repose like the goddess I am.

*I am showing her how to do my shots and explaining that even though she has to feel me up to make sure she is not injecting into an area that is still swollen from a previous shot, it does not mean that we have to take our relationship any further. I don't usually allow anyone to feel me up on the first date, but she and I have known each other for a few years, and even though I want to just be friends -- it's not her, it's me -- we can cuddle sometimes. She can do better than me and I only want her to be happy.

Of course I have been running her through all the ins and outs of what MS is and what it does and how it effects one, which is all that boring crap that, if you are like me, you are bored stiff with. She is a good student and interested in what it all is and is not, and she has the arm thing down just right so my jeans may last a little longer.

Saturday, April 3, 2010

"Finally An Adult!"

One of my old foster kids moved in with me. My little acorn is all grown up and ready to come back to the ol' oak tree. And this ol' oak tree was waiting with open branches for her to come back. She is 20 now. I got her at 12. 12! And she will be 21 in October. Ahh, how times flies when you're not having fun. She is my all time favorite foster kid. I always said that she and the oldest boy we had, with the 3 boys we got, should have been mine. These 2 kids and I bonded and I let the oldest boy go because he was only 3 and I didn't want to separate him from his brothers, even though it broke my heart to bits to let him go, I did it out of love.

When she got to go home she was 100% against it. She wouldn't pack anything more than an overnight bag to go home because she was "going to be right back." I packed up a bunch of her stuff, but she still left as much as she could at my house. After the courts said they could go home, I expected the girls -- there were 3 of them -- to ride with their parents, if for nothing else for their parents' feelings. Both the older girls rode home with me, only the youngest, 7 at the time, rode with her parents and I remember my shock at seeing her climb into the front seat with her parents and drive off with no one wearing a seat belt.

Taking my acorn to her parents' house, we held on to each other and cried and cried our goodbyes. I know it didn't make her parents happy to see how much she and I loved each other, but it was just a fact. The girls were with us for 15 months and when they were finally able to go home, their case worker gave us the option to keep them, but it was a package deal. We kept them all or none, and as the 7 year old was convinced that she "was gonna die!" if she didn't get to go home, we let them go. My acorn -- who I will now call Acorn -- went through a hell of a time with her parents. She suffered through serious depression, and dropped out of school. When they were with us, they were all straight A students. The 15 year old had dropped out of school before she came to us, but I don't play that game. She went back to school and had to do summer school before she went back to catch up, but she did catch up and, as I said, they were all straight A students.

The 7 year old, who is now 14 almost 15, says that if she could go back in time, she would tell the courts to not let them go home, because things were better with us. She says that even though she hated when she got in trouble and got grounded, she needs that. I say what I mean and mean what I say. If I told her to do something or she would get grounded, I meant it and I still love the memory of her telling me that someday she was going to come back and ground me and make me go to bed early. I can't wait for that day! Their parents try, but their mom is working full time and trying to keep it all together. They don't have the resources that my ex and I did. They don't have an extra car for the girls to use to get a job, or even get the practice to get their driver's licenses. I respect their mother for trying so hard, especially as it is exactly as my mom had to do to keep it all together for us. I respect their mother even more for telling Acorn that she shouldn't have made her come back to them, she should have let her stay with us. That to me is a true mother. She loves her daughter enough to want the best for her, even if it was letting her go.

Now Acorn is back with me and one of the first things she said was, "Now I am on my own. I finally get to be an adult!" I'm not so sure of how adult I am, but I am glad that she is ready to spread her wings and get to make her own decisions about her life. I always say that kids need a solid platform to jump off of to launch themselves into the world. It makes it so much easier to launch yourself if the platform is solid. Not that you can't launch yourself on an unstable platform, but I think you will be more successful with something solid behind you. I may not be an adult, but I am a solid platform that she can always count on.

This ol' oak tree is THRILLED to have her Acorn back, and looking forward to seeing her get her life going the way she wants it. I know there will be disappointments and things may not turn out the way she is planning, but that is just part of the game. And I am ready to rejoice or mourn with her every step of the way. Ahh, my little Acorn, how do I love thee? I will have to count the ways in a different blog. As usual, I have blathered on for too long.