Magic Pills

I was approved to start a trial of Ampyra. The magic walking pill for people with MS. I am excited. I asked my IV nurse about it and she said, "Ampyra works about half the time. Either it really helps or does nothing." Oh. Historically, those are not good words for me to hear. But, still. Maybe I will be in the half where it works and I'll be running soon.

Of course, in the great American spirit, it probably costs more than most people make in a year. (combined income) So, if I cannot demonstrate improvement - not going to happen.

People that see me walk probably wonder what my deal is. I try very hard to make my gait as normal as possible when I am around people. If I don't have to walk very far, it is generally okay. Just, please. Do not take me on a long walk. You will be carrying me on the way back. Or, if you are not the carrying sort, leaving me behind on the trail. I don't need walking assistance. I am way too uncoordinated to use a cane. A walker? Eh, not there. (although the shopping cart is my secret walker in the grocery store) I walked down the street to look at the moon last night - it took 15 minutes. It should have taken 5. So, it is just incredibly frustrating to be so darned slow. Oh, and I have fallen 4 times already today. Not like flat on my face or anything life or limb threatening. Just, ouch.

The Magic Pills arrive on Monday. Maybe they work. Well, Hell. There's a 50/50 chance they will!

The One Where Boy#1 Wasn't Really Bloody and Howled Down the Street

"Ah, the suburbs. Fostering the illusion of success since 1950." ~Daffy Duck, The Looney Toons Show

Do I ever hate it when our crazy escapes the house without my knowledge. 

Boy#1 had an "episode" early in the afternoon. There have been some change in routine, and, shockingly! - he's not adjusting so well. He will adjust, it will just take time. I don't know if he's just sad or unsure of how to express how he feels. 

We have a group of kids that come over to play with Boy#1 and Boy#2. To be honest, they come over to play our electronics. Boy#1 does not like to play video games. It is his one of his many forms of rebellion against the norm. (yes, i know. not only is he naturally different (hahahahahahahaha), he finds extra ways to be different to express "fuck you society who thinks I'm not part of you anyway".)  The boy his age in this group of kids is pretty nice and tolerant of Boy#1's quirks - a total Eddie Haskell. I'm not stupid, but I also don't let them play unsupervised.

Then, there's Boy#1's friend from down the street. He's pretty quirky and shows up in costumes and likes to make movies is probably glad to have Boy#1 to just be himself around. But, he is not home very much. The other day, someone knocked on the door and by the time I opened it, nobody was there. Then, I heard a voice say, "Go ahead. Ask me who I am. I dare you!" So, I said, "Who are you?" This boy falls out of our bushes in full old fashioned gangster gear stammering he thought Boy#1 would open the door. I told him to hide and do it again.

Yesterday, Boy#1 left to go see him. I didn't realize he was gone until he came back in crying, but unable to speak. Finally, I got it out of him that he had knocked over our neighbor's bird bath. (I'm really good. Scary good at figuring out what the hell he's talking (groaning) about.) So, I read him the riot act about not leaving the house without my permission and especially when he's having trouble! It was not an effective speech because he left again while I was on the phone in my room with a drug company.

It took me about 4 minutes to realize he had left again.

So, I'm going down the street towards his friend's house and I see two women trying to corral Boy#1 and "help" him. He was running in a circle moaning hysterically and his pants were sort of falling off. One lady was on the phone. With 911. I mean, they had no idea what was wrong with him and he was howling and he kept trying to get away to go down the alley. They also said he had blood pouring from his mouth. Oh, jeez. It was chocolate.

The police came and the paramedics. They were so nice. Didn't make me feel stupid for having pajamas with cats all over them on and a son with chocolate streaming down his face (also lying on the grass howling). They just let us get up and walk home with dignity. 

Dignity means different things to different people. For serious.

The Silver Lining Outlook

So, yeah. MS sucks.

However, Boy#1 is doing so well. Stable as we could hope he could be. Ah. How nice. It does give me time to whine and mope about myself which is indulgent and sort of neat for about half of a day. Do not wallow!

"Find the good - and praise it." ~Alex Haley

Maudlin Me

 This is a picture of me reading that Boy#2 took with the Ipad. Maudlin Me.

Maudlin is a word that my friend uses. I firmly believe that lasting friendships can be founded on understanding maudlin. 

Maudlin: weakly and effusively sentimental

I feel things too much. 

I am having a pretty hard MS relapse. There is pain involved. I have discovered that I don't handle pain very well. And, it is nerve pain. Which advil does not take away. It is pretty easy to feel sorry for yourself when you hurt. I also forget how very much a couple of possible brain lesions can really mess with my mood. Where simply hearing a song takes the breath from my soul and the tears from my eyes. Which is a terrible thing because I am almost always driving and I can't really see out of of my left eye.

My legs do not work quite right and stuff. Which sucks. Mostly, I am fatigued beyond measure. A lady at the store today asked if I was okay. I look sick and tired. I said, "What? I have an autoimmune illness. It is invisible. I look okay, right? That is what people tell me to post to my FB wall if I care....". So, the fatigue is showing.

I was supposed to start Cellcept. I did not. I had the sinus infection that would not end (MRSA and ecoli) and two of my back teeth seem to have gotten bad while I was sick. Not that Cellcept would even work. Nobody knows. But, killing off my WBCs might rot out my entire face. 

It is not that I feel sorry for myself. It is mostly that I worry. That I do not like the feeling that I cannot keep up. That the years are blowing past me. Stealing my essence. Leaving parts of me behind.  

Just Sad

I am just sad. There is really no better way to describe myself.

I will not stay this way, of course.

Boy#1 is pretty sad. The week in the "altered state" did him no favors. I cannot help but find myself terrified that he will slip into these states when things are hard. What if I am not there? That is a really big waste of time, worrying about that. I know that. But, today - I am worried.

I don't want to think about the implications of brain atrophy. If it is contributing to the "episodes". What it will bring for the future. It is not as if I can regrow his brain, right? So. Get over it.

I'm going to try to take better care of myself. That way maybe I will not feel so railroaded by life. The only thing I can really control is my diet, so I will give that a whirl. Having MS is really sucky. I am so tired (yeah, we're all tired. i get that. everyone is tired.). I move in slow motion. Everything is so stinking hard. I can walk. It just shouldn't be so hard.

So, yes. I am just sad. Tomorrow, I won't be.

Snot, Pee, and Me

Today was my IVig day. I hate this day. And, it just keeps showing up. Every 28 days. Usually, I sleep. Today - it was not meant to be. The IV clinic is set up in one large room with individual chairs that recline and iv poles. The nurses station is kind of in the middle. I know the nurses very well because I have been going there so long, so it is very comfortable. The IV meds make me very dopey. I guess I started having some weird nightmare and the nurse woke me up. The people that were in there first getting meds (most infusions last 2 to 3 hours) were talking about their snot. Oh, gads. I automatically thought I was going to hurl. I guess I dozed off.

I woke up to the man next to me. I think he was let out of the hospital too soon and they put him as an outpatient for IVig. He has a very complicated, reversible, and horrid neurological problem. Anyhow, he was really loud. He was paralyzed. He shouted on his phone and at the nurses. Then, by golly, he asked if he could have a urinal. Which he missed. This is not the normal way things go at the IV clinic. I almost hurled.

He is all alone. His sister-in-law (don't know where the wife is) came with her sister and helped him into the wheelchair and stuff to go home. They talked to me and were very nice. She said my chicken salad looked great, but she can only afford to make it with turkey after Christmas. I almost hurled.

I finally got done and left, then had to pull over. I hurled.

I picked my kids up from the cousins/grandparents house. They were all very loud which is very bad for my migraine. I managed to get them into the car. Boy#3 fell on his bottom which hurt his recently operated on peepee. Boys# 1&2 got into a fist fight over the front seat. I started crying. I turned on the radio and Edie Brickell was playing.

And I quit I give up, nothing's good enough for anybody else,
It seems
And being alone is the best way to be
When I'm by myself, it's the best way to be
When I'm all alone, it's the best way to be
When I'm by myself, nobody else can say
Me, I'm a part of your circle of friends
And we notice you don't come around

So, I wiped my own snot and laughed and drove on home. Funny funny funny irony radio.

Then, they locked me out of the house before I could get inside. I peed myself. I laughed again.  Oh, HO. Don't go throwing stones when you live in a glass house, CrazyMommy. You could have used one of those urinals.

His and Her's Brain Atrophy

Boy#1 was very ill and actually was in an altered state. It was really awful and seemed completely out there to me, but - it actually is not a strange occurrence. I think he shut down physically and mentally when he got sick and that led to severe illness.

This is where it becomes tricky making this my story and not putting his whole story out there. 

However, the initial CT scan in the ER showed brain atrophy. The doctor tried to delicately find out if this had showed on previous scans without saying the word "atrophy", but she could not. So, she finally said that was what was abnormal. It has maybe nothing and possibly everything to do with why he went into this reduced level of consciousness. I felt defeated at that moment, but it was the first of many defeated feeling moments.

He was actually just so sick that he was in an altered state of consciousness. It is really scary to witness, but his behavior was not abnormal when compared to the symptoms of semi-comas. 

I have multiple sclerosis and most likely atrophy. I do not even think to ask about my scans. I do have some problems with mental functioning. Not every day, just some days. You can tell by my Scramble With Friends score. Either it is great! Or, just unbelievably dismal. (great is a subjective word, please remember)

The implications of brain atrophy on Boy#1's CT scans and MRIs do not make me feel very good. He has lost some function. Most likely, it will continue. Some people will say that the meds cause atrophy. I will not bother arguing that with anyone. Schizophrenia and meds are what cause the atrophy. And it is a chronic illness. Meaning - it isn't going anywhere.

How does this affect me? It adds to my worry. How will I care for him? How do you help someone reach adulthood and manage adulthood who does not have the best level of functioning? Mom guilt. Always always always guilt. Because, I think there is a linear connection between MS and Schizophrenia.  I can compensate and deal with my brain atrophy. Plus, I do not have psychosis interrupting my thoughts. I am not sure how to help him. I guess just maintain what we are doing and hope for the best.

Truthfully, it is really hard to not lie to myself. To always convince myself that I can handle it and make it all okay. To say, "He is doing great!!! Great in school! GREAT GREAT GREAT" out loud and halfway believe it in my heart. The things I thought were important (learning to read) are not really all that important. Which completely sucks. For me, that is. Boy#1 honestly does not care.

Once again, all I can do is try.

My Mother, My Grandmother

My Grandparents finally moved closer to us. Their house was beautiful and had beautiful surroundings, but it was time to be near. That is good. My grandmother is in the hospital with heart failure. Luckily, she just needs a pacemaker. 

My Granny has been my best friend forever and ever. I stayed with her when I was young, she loved me when I was annoying, my grandparents visited me weekly while I was in college, and my husband proposed to me at their house because he knew it was my favorite place.

The concept of losing her is not one I like to think about. Yet, it is there. My mother is taking care of her in the hospital. It is best.

When I was very young, my grandfather was shot at work when someone was fired. The man used illegal bullets that exploded inside of his body. He was left alive, but paralyzed. My parents took care of them then.

I realized last night, my life has been full of difficult things - and wonderful things, but my family has always taken care of each other. Not everyone is so lucky. But, I have had my Mother and my Grandmother to show me how to stay put together and wear my Big Girl Panties. I am lucky.