Sunday, July 29, 2012

I Dare You To Move...

Just when you think you know how things are going to be in the world, the road starts getting steep and curvy. Reminds me of Clan in NM when I was in HS. Good times, but dangerous roads. Just glad we were there during the summer and not having to drive those at night.

There's nothing I can't overcome, but some things you want certain people along for the ride. One of those recently jumped out of the card and slammed the door shut. It was unexpected. I have an emptiness I'll never be able to fill where that person used to be. I was lead to believe things weren't shiny but then told they were. Feelings and thoughts were exchanged on both sides that weren't appreciate and here we are, no longer speaking. I'll admit; I still cry about it now and then. Wound is still fresh. Always sucks losing one of your oldest friends. It's like the loss when someone dies, but worse because you know they're still around, just that they want nothing to do with you. The friendship was never a lie. The worry and wanting to bring happiness was never a lie. I suppose speaking here it means nothing now, but that doesn't make it any less important to say. You're missed, C. And still loved. And still prayed for. I hope this new path you've chosen brings you that happiness you so incredibly deserve and you find someone to send you those purple roses for your birthday and valentines day that you won't get from those at home with you. You always really seemed to like them and they made you smile.

Health stuff was great until a few weeks ago when the friendship world exploded. One part's been a little wonky off/on since March, but the pain didn't kick in until the super stress did. The wonky stuff a Neurologist Dr N says is a weird form of seizures. I mind my own business, can be any time of day doing everything or nothing in any position of vertical or rest and I'll get what feels like a lightening zap (has moved around a little) to my brain for a split second then there's 45 seconds of the world spinning clockwise REALLY fast (can feel it even if eyes are closed), stomach feels like it wants to be on the outside but so far I've held it in, then over that 45 seconds the spinning slows down until it's back to even keel. Downside balance is frakked and I walk around like a drunk anywhere from 5-24 hours; depends on the episode. I think we're up to 5 or 6 now. They put me on this medication about 4 weeks ago now maybe called Keppra. Taking it twice a day and since taking it have had two episodes; maybe 3. Most recent was early last week. I don't know how long it takes for this stuff to fully kick in. Personal opinion of it right now is it's not doing a blasted thing for me. They did an MRI the first time it hit me to the point where my balance was frakked and I went to the ER and found nothing. After a couple more they did an electrodes thing over 20 minutes and shined strobe lights in my fact and surprise surprised, nothing. Brain scan isn't gonna show a damn thing unless it's happening so it was a huge waste of time. Yeah, I'm a bit cranky about it. It's because I'm scared. I will absolutely admit that. Things concerning pain and inflammation; used to it and know how to deal with it. Things involving my head???  Scared me absolutely to tears some nights. I hate that the doc isn't sure about what it is so is just taking his best guess and he wants me taking this stuff 6 months and then stop and see if they keep happening. He assures me it's not a side effect of any medication I'm currently taking or anything Dr P's put me on in the past since my UCTD kicked in. Considering how many of those medication can have possible crazy side effects the answer seems easy to me that it's one of those or a combination in the cocktail, but he says not. *sighs* Just hate not knowing when it's going to hit me again. It makes me afraid to drive and getting out and visiting folks and going on road trips is ridiculously important to me. I don't want that taken away.  So here's hoping this med "fixes" this and during the next 5 months it goes away just as quickly as it came on.

Dr P had me taking Cellcept for awhile which I've stopped; my own decision before I let him know about it at our last appt a couple weeks ago. Since my last infusion beginning of April, I've actually felt really great up until a few weeks ago.  Normally after about 8 or 9 weeks after the Rituxan I start to hurt again, but not this time. It seemed to have finally worked the way I always wanted it to and stopped the Cellcept just seemed right.  *shrugs*  I just went with what my body was telling me in a weird subliminal way and Dr P said he was cool with it; just don't stop taking anything else *smiles* Well, except the prednisone. I've been on 1mg for what seems forever now.  The last two times I've come completely off of it though the pericarditis has kicked in and that always sucks.  So we're back to "the fear". I want off this stuff completely, but I also don't want to feel like I'm having a heart attack in 3-4 weeks after I stop taking it. Time off is short on the work front, especially with two days of infusions left this year; maybe 3 if I do another right before Christmas then another on my birthday. Probably just going to put off the next first round until Jan and have it after New Years/birthday party time. Nice to have something to look forward to.  Of course comes the balancing factor of all the feeling great since last infusion. If you've kept up with this blog you'll remember I have cardinal rules. One of the few is "Thou shalt not stress". Well, losing one of my oldest friends in less than 72 hours completely shook that feeling great foundation. Hands and feet hurt again. I've refused to take more prednisone to help with it. More relying on excedrin (sp?) migraine to help with the headaches I've been having. Can't keep the stress out of my neck and shoulders. Had a GREAT massage recently to try and help, but it's going to take more than one and for me to let a few more things go stress wise before it'll really help the way I need it to.  Points for effort, though :-)  Next infusion is on the 6th then the second two weeks after that. Dr P and I had talked about switching to Benlista (sp?), but since the Rituxan was working so well seemed silly to change.  Now I'm not so sure, but I know it was the stress that sent me back into the pain bucket. Maybe after this next round I'll find my happy-ish mental space again away from hopefully a lot of unhappy mental stuffs and get back to physically feeling like a normal person again. Here's hoping *take a drink of ice water*

B has been doing great things with the TXSG. He's really enjoying it. I was sad it caused us to miss our 1 year dating anniversary but this is a military based organization; not like he can just decide not to go to Annual Training and I wouldn't ask him not to and even if I did, he was still going to go. Hoover thing is that AT's likely going to fall on our anniversary every year forever. Still not sure why they don't have AT in like Jan and then BOT in March/April when it's still cooler and this will get everyone trained up BEFORE the fire/hurricane season kicks in instead of in the middle/end of it when they guys can't officially do squat until they've passed all the training.  I'm a civvie so I have no say, but some of their choices don't make a lot of sense. I'm sure it does to them, though, so as a peon I just have to trust they're going to do what's best for those that join.  Here's hoping again *takes another drink* It's always good to have more folks in the world organized enough to help the other folks that need it.

Since mid-March I'd been trying to find someone/some place to teach me stage combat, specifically sword fighting. Through some networking I finally got the guts up to contact J who met with me and put me in touch with C. We've sadly only been able to get together once, but that once was still awesome. Praying he heals fast not because I want to be able to learn more from him (that's just an added bonus), but I know what it's like to be in bad pain and I wouldn't wish it on my worst enemy. Hopefully he finds a way/person/place to get healed up soon. Auditioning for SWFF in Aug just isn't going to happen; I don't know anything yet. But I'm at least going to contact B and see if there's anything more I can do at the Faire onsite proper beyond what I'm doing digitally. Love the people and the atmosphere and the incredibly awesome happy vibes from that place. It really does have an air of magic to it and happiness is healing.

Been exercising since April-ish. Did GREAT at first. Lulled. Did better. Lulled a LOT. Went back to the gym today. Going by myself I'm having a hard time staying motivated. I know I don't want to look like I do now. I know I feel better when I exercise regularly. I don't lose a damn bit of weight, but I've at least lost some inches. That's just about stopped though returning back to a pizza and grease diet, though at least I'm still keeping sodas to a minimum and drinking a heck of a lot more water than I used to.  I have such a long way to go. Trucking on is really my theme, it's prevailing that still seems to be just out of reach for a lot of things.  Trying hard to keep the faith.  I always have it in others, but a lot of days these past few weeks I've had a hard time keeping it in myself.  *smiles a little* B still has faith in me. I will continue to say just how bless I am to have him. And he's taken such great strides to better himself but getting his exercise on double time and really working hard to be the best he can be for his unit in the TXSG. Super incredibly proud of him.

Told him the other night I wanted to spend the rest of my life with him. He didn't run screaming. I'll take that as a good sign. Told him also that were things to ever work out in our favor in a positive way I'd at least like to consider extending the fam beyond cats and some day a dog or to. He seemed ok with that concept to. Shocked is not a strong enough word to describe how I felt with his reaction as it was totally not what I was expecting, but just... wow. I'm really happy. I enjoy our time together and miss him when we're apart. I love sharing everything I can with him. He looks after me when I don't do a good enough job and keeps me smiling and telling me I'm beautiful. A man who takes care of me. I just never really expected that having to normally be on the giving end most of the time in a lot of other relationships. We have a great balance. I try hard not to frak that up. I don't always do a good job, but he takes it all in stride and sticks with me through the good and the bad days. Blessed with some extra looking out really seems to be what's going on and dearest Lord, please let it keep going on. I don't want to think about a life without him.

Ooo... Going to meet with an acupuncturist this upcoming Fri for a free consultation. Supposed to meet for an hour with him to give him the 411 on my medical life and see if he thinks he art might be able to help. I hate the thought of someone poking needles in me and the concept that it could be done in such a way as to help me seems really bizarre, but a LOT of the people at the Rituxan infusions say that doing acupuncture has greatly helped with their pain issues and some even say it helped with their allergies. Crazy stuff, eh?  Well, I guess not too crazy since it's been around a looooong time. What I want to try to get out of this is getting off the drug cocktail. I want to stop the Rituxan infusions, stop the pills for keeping the inflammation under control, and get back to feeling good enough to play bass in rockband again without my hands hurting or exercise enough to get something out of it instead of constantly worrying about how much pain I'll be in after because it'll set off the inflammation. It's a stupid way to exist and that's about it is; existing. I want to do so much more than that. I have a lot of big plans and dreams I would like to start on sooner than later and maybe over time this will help me reach those without all the medication assistance. Points for effort anyways, right? *grins*

Three to four months of catching up makes for a war and peace kind of post. Sorry about that. As always, lots to get out and I don't let it out here often enough away from the world of fb and other social networking. I try really hard to keep those places light and happy as there's enough crummy stuff in the world as is and folks could always use some more cheering up. I even hear tell a dream I had might have inspired someone to get back into movie making again *smiles* Just the thought of helping inspire someone is awesome. I have no talents for anything in an artistic fashion, but I try very hard to make folks smile and inspire when/where I can and encourage others to find their talents and learn to hone them and use them for great things.  There's much awesome potential in the world and the more it gets unleashed the better things will get. I still have faith in that.

Think B said it was shower time now that he's used up all the hot water for a bath :-P Things have hoovered recently, but I have survived every day since and as they always have, they'll get better before they get worse again and then wash, rinse repeat. The saying is true, "What doesn't kill us makes us stronger."  Just like R has been saying, I'm gonna be She-Hulk before all's said and done at this rate and for coming out better in the end after all I've been through and will go through and will help others through, I'm OK with that as long as I don't have to be green *laughs*.

Goodnight world. Hope you have sweet dreams and life treat you most excellent.


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