Slack ass that I am

So I do this thing where I like to hide and shrink away from the general public. I have been doing that for way longer than I thought apparently. Time to maybe stop that. So a brief, sure whatever, round up of the past little while: I'm still on Tysabri. I got a new port last Thanksgiving because the old one was a shit head. that ruined our travel plans but hey whatever. the little girl has an abundance of dirty kids in her class so I've been avoiding school for the past few weeks. I'm not feeling the need to get the flu. now I have a physical therapist, soon another one according to the urologist so that will be TWO physical therapists, a urologist and a few endocrinologists oh and was there a nutritionist last time? on my care team. yeah pathetic. whatever. the urologist said that with the new pt stuff they could likely train me to flex and release specific muscles using different nerves that actually work to fix the pee issues. that would be awesome. hopefully there are some that want to listen that still work otherwise I'm not sure what they'll do. I'm filing for disability. the paperwork is massive so I hired a lawyer. The last time I started this stuff I got some paper back where I needed to return it in however many days and I was in the hospital so those days passed and got missed. oops have to start over. this time I will just let someone else deal with that. there's no way I can keep up with all of that AND everything else that I regularly forget. Um that's all I feel like posting. I'll be back.

Oh and another thing...

Zoe has suspended our little group of ladies. We meet one more time then no more unless we NEED each other. I think she's doing it because 1 we're wayyyy familiar and 2 two of us never go to see her because we go to the group. We all agreed but I secretly think it's a crappy idea. Guess I'll have to make an appt and let her know.

and did I say this before? The thing about how now I wake up several times a night because my arms are totally asleep? I try to turn over or use them and it wakes me up because they're just there. Not responding. I also am sleeping with my legs flexed. My fricking knees hurt like a beesnitch because of it and I keep getting muscle cramps in my legs. Stupid.

Before I forget...

for like the past 2 weeks I've been having issues controlling my hands. I cut myself when shaving...can't even hold the razor level and it takes 27 years to brush properly because I can't keep a toothbrush level. I also keep dropping stuff. Pretty sure I should call the neuro and report that. I'll get on it. Eventually. Hell at least I'm making note of it.

Things to do...

there's a thing in my brain that I am learning from this book called "It's not all in your head". I keep forgetting that I have permanent damage in my frontal lobe that makes it difficult for me to control my emotions. When I have an issue in my head working something out if I don't ask for help it only gets worse. There are a lot of issues in my head lately. People I've deleted that I had to because they weren't good for me or right for me. People who I need to stop listening to or taking to heart their words. Not everyone should have their opinions heard and it's up to the individual to decide who they should ignore.

I will find my way. Everyone does eventually if they try hard enough for long enough. Everyone does.

Delete.

it's 2012

and I'm starting the year with a clean bill of health...all things considered.

Tysabri is still my friend. I have lost 6 pounds since last month when I was weighed before my infusion. I'm about to have my whole house back. And I am going to craft more.

Welcome 2012. I think we can be friends.

It's been awhile....

and a lot has changed I think. I have a new neuro a new DO a new everything except the same Zoe. I get my Tysabri in a leather chair where there is no TV thru my port still. The port bugs me of course. Itches and is evil making itself known all the time. I'm about to go see the endocrinologist, this week in fact. Hopefully this one will be able or hell WILLING to help me.

I am NEGATIVE for the JC Antibody I am building a big ass dollhouse that keeps expanding. I'm feeling better than I have in a long time.

I plan on continuing this way. I like it better than feeling like shit.

Wow. Soon I'll have had my 8th Tysabri infusion...

I think it's eighth. I have an MRI soon as well to let me know how it's working. If it is I'm getting a port placed. No more evil bruises from getting stuck wrong.

In the past eight months a lot has happened. A lot of negative things. Some positive things. A lot of time has been spent in the hospital as an inpatient in one ward or the other. In fact this weekend I'm going in again. Only for a sleep study but still I won't be in my bed at home.

Zoe's group with us MS/Lymes ladies as been a godsend. I seriously hate the touchy feely talky thing but it really helps to sometimes bitch or joke or just talk about stuff with people who get it. I don't have to explain anything b/c they ALL understand where I'm coming from. I do need to keep seeing her individually though. My brain and my emotions are taking me to some stupid places sometimes and I need her help working thru them. There's no shame. I have depression...and a lot of other shit. Who wouldn't seriously. If you don't have you have a chronic condition I'm calling BS on you.

Did you hear that? DEPRESSION. Louder? ok DDDDDDDDDDDEEEEPPPPPRRRRRESSSSSSSSSIIIIIIIIIIOOOOOOOOOOONNNNNNNNNNN and I've even played ping pong with strangers to keep myself alive and get help b/c I would have rather been dead at one time then burden the rest of the world with my bullshit. I'm mostly dealing with that. Mostly. For the immediate future. And really that's all I can handle for now.

So really, if you feel like shit in your head like I do sometimes but it goes further and makes you physically feel shitty or you'd like to like sleep forever and not wake up or blow your brains out or walk into oncoming traffic tell someone to take you to play ping pong. It just might be the best thing you ever did. Just saying.

I need to continue with this huh? Slack ass that I am. I will. Never fear.