A lot of crap on my mind...

Okay....

I don't have a voice. It decided it didn't like me and it's apparently taking a vacation. It started last night with about 40 seconds left in the Super Bowl. My Steelers decided to give me a heart attack and apparently my voice was the casualty. We had several people over for the big game who were not big football fans but they were big time into the game because they had $$ in their work. We took a spin on the old football squares tradition - we bought little gifts (and not gag either) and gave them away at the times that $ would be won... One of our friends won 3 freakin' times.... Everybody else said we rigged it!!!

Today's been interesting without a voice - My boss kept commenting that my "sexy" voice was freaking her out and she did not like me not talking... And I always thought that my work would be appreciative of me not having a voice!!! I know some of them appreciated it!! AHAHAHAHAHAHAHAH

I got back in the pool over the weekend and IT FELT FUCKING GREAT!!!!!!!!!!!!!!!!!!!!!!! I was so excited. I only did a little bit - but it didn't hurt and I felt good afterwards. I can't wait to get back there, which is tomorrow morning!! YIPPPEEEE!! No legs spasms, no hurting back.... Nada.

I did, unfortunately last night, experience that horrible side effect from Copaxone that causes you to stop breathing and your body to go horribly wrong - I felt like my stomach was turning upside/down and inside out at the same time my lungs were filled with fluid and could not get anything in or out - I could not feel anything outside of my lungs burning... I passed out for the briefest moment .... My partner swears I did okay but I thought I was going to die... OMFG!!!!!!!!!! I don't know how she stayed so calm and cool... I know I heard her voice through all the haze and pain.... course, I was not happy when she would not let me lie down for the 20 minutes afterwards considering I could not catch my breath.... It still hurts to take a full, deep breath. I'm wondering if that's why I haven't gotten my voice back yet... I know I'm supposed to call the honchos with my meds but I can't very well talk to them without a voice, can I? I'll call them later...

Another thing in common with...

my father. And it's not necessarily in a good way. And, I'm not breaking a promise by talking about it here but I'm going against his wishes.... I'm not even supposed to tell my partner. Of course I did - I share everything in that relationship.

There must be something seriously wrong with my family's genetic immune tree. My grandfather's been dealing with non hodgkins lymphoma for the last 6 years and there's some suggestions that has some immune related issues. Now, and now, and NOW... my dad's been diagnosed with CLL.

Chronic lymphocytic leukemia

If you notice I'm not just bolding and underlining it for grins and giggles - it's linked to Health Talk's information about it. Cuz, when I hit up the site for MS and it was one of the few sites recommended by my docs about it.... I figured it was go to go to about CLL.

I felt like I was the parent on the receiving end of that bad joke of -

Mom/Dad I'm dying of an inoperable, malignant brain tumor. Insert hysterical crying.
Until son/daughter tells them that he was just kidding - He/She's only gay.

Cuz, my dad started out the conversation that he had something to tell me, and that it was he had cancer. I was driving at the time.... luckily when it took a few seconds for it to sink into my brain that I had taken my foot off the gas while driving and had slowed considerably. Luckily it was not too long after that he delivered the punch line and said that it was cancer but it was "inactive" or something to that effect. Then he told me it was CLL.

Apparently his heart doc thought something was up after my dad had a case of the flu this past summer that he could not get over. They almost admitted him into the hospital just to give him some high dose antibiotics IV. Luckily he eventually got over it with bed rest and lots of meds and a couple of rounds of oral steroids. Anyways, he started telling me a little bit about it and how he did not want anyone but his children and wife to know about it. How he did not want the stares/comments that people get when saying the C word - cancer. He said he was already sick of people asking how he felt and how he was doing... Which was funny - he actually laughed pretty heartily when he said it and told me he now knew how I felt when I got frustrated with people asking me that! I asked him what our family did in past lives to deserve such horrible immune system luck.... he actually laughed at that too, and my father is not a laughing type of guy...

He told me that he apparently has a very mild case and that the normal blood tests were not how he got diagnosed - his blood had to be sent to a geneticist to be diagnosed. Sorta correlates with my spinal tap being negative for the proteins we MSers usually have in a spinal fluid but the number of lesions and other blood work was confirmation of my MS.... So, isn't that just some great info??? Apparently what I read up on it - my father's going to live to be a very ripe old age... especially since both his parents are still alive and kicking in their late 80s and my nana, his mother, is still living alone and driving!!!!! She's a little batty now but still kicking!!!

Geez.... he's telling me now he now has an idea of what I feel like about my MS and I now know how he felt about being told about a chronic illness diagnosis..... I know we're supposed to naturally reverse roles sometimes in our relationship with our parents but I could have done without this. My dad's very upbeat and positive about it so I will be too!!!

Course, I'm not being entirely truthful with him about my back. I told him my appointment today was a routine post-surgery follow-up. The good news was the doc said he's not too concerned, especially when I kicked booty on my strength tests but he did order another MRI... next week I get to go back in the pill box... I don't care. I fall asleep in them now. And he did clear me and actually ordered me to get back in the pool and start getting some strength back.... Yeah!!!! The saga continues... : ]

I finally have a REALLY GOOD REASON...

to watch American Idol!!! AND, to become a fan of the Osmond family.

So, did you see it? Did you see the 2 minute segment that probably generated more buzz for the NMSS and MS in general for the past couple of years?? There was one of the Osmond boys trying out for American Idol tonight. He's Alan Osmond's son - David Osmond. Turns out, and I have not seen either names mentioned in the numerous "Celebrities with MS" articles that are out there... Course, I don't know how much the Osmonds rate as celebrities anymore...

Alan Osmond has MS and he says that his hand tremors was one of the things that he got run out of the business for. His son, David, also has MS and spent some time in a wheelchair a while back.... They didn't phrase it in MS words but I think I translated it to that wheelchair experience being his diagnosing experience...

Isn't that sooooooo cool?? And, David actually had a pretty voice. I so hope he is good and has a great Hollywood week and we get to talk each week about MS. I worry about him making it though. Clay Walker has talked openly about how he does have to restrict his tours because the heat of the concerts gives his body the MS willies. What if David gets a flare because of all the stress and literal heat from the stage???

Geesh, leave it to an MSer to worry about the lighting - screw the voice!! Hey, we could get him to wear different cooling vests each week!!! I hope he wears an orange bracelet for MS like David Cook wore his brother's cancer bracelet all last year. They mentioned it almost every week. What would we do with all that exposure????

First, we get a first lady in the big house who's father's struggles with MS were talked about quite openly during the campaign... Teri Garr always shows back up on Dave when we need a good MSer face showing!!! Now, we could break the 10 million mark barrier - with people who actually hear about MS!!!!! OMG!!!

Anyways, I'm such a mushy I started tearing up when the dad was talking about his son and his struggles and how he's such a fine young man! I wonder if all the MS researchers out there immediately tried to get in touch with them.... after all, it's 2 MEN that share a whole lotta genetic material and each has MS.... research wonderland, even if only for a case study!! I wonder if he's on any DMDs???? If so, I wonder if he'll talk about it...

I spent a wonderful day at work trading emails with my 8 year-old niece... she was with her mom at work and apparently was sending me and her dad emails constantly. She barely had the patience to wait for me to respond (which I did to all but 3 emails she sent!) and I'd get an "Email me! Love you" or "Hello?!?!?!?!! Love you". And then she'd get my email response to her question and ask another.... I had to laugh when I got the email "can I still email you? dad says I have to stop emailing him so he can get some work done" and yes, it was all spelled right and gramatically correct. Course, that made me have to respond in kind!!

At one point I did have to do something for a co-worker in the field hunting down a really bad bastard and so I sent my neice an email telling her I needed 30 minutes where I could not email but she could still email me if she wanted. She said ok and actually only sent about 3 emails to me in that time... and right at 29 minutes sent another email asking if I could email her again! I had to laugh and emailed her right back. She'd attach a picture and ask if it was a picture of me working... One pic showed a girl typing on a computer and another showed a woman making copies.. I was so amazed at this wonderfully smart little girl... SIGH - love her so much!!

Anyways, sorry for following the shiny thing but I thought about her tonight watching American Idol. I know she's watching it with her brothers and family. My brother and sister in law have told her about my MS but who knows if they fully understand. They know I've been sick and they actually stayed with us the weekend when I had my last IV steroid treatment. They asked a lot of pretty neat questions about it and wanted to watch me change my IV dressing and when the nurse changed my IV she actually watched.... I expect acceptance into med school in the future!!

But, I wonder if my neice or nephews will have any questions for me about MS the next time they see me? Or, will it have already passed their minds with all that they get bombarded with daily. I'm definately going to ask my sis in law if they asked any questions while watching it....

I'm still thinking about an American Idol winner - and MSer... what a wonderfully beautiful struggle to have, huh???

Can't think of a spiffy title....

So, I got one of my many doctor's appointments confused... DANGIT!! I got the right office - my opthamologist but had the wrong test. It was a good/bad thing. It was not time for my vision field test - that headache has been scheduled for July. It was, however, my complete eye exam and meant dilation. Ever had your eyes dilated? Maximum? Luckily this was only 50% and it still took until the morning for my pupils to be normal...

The pupils so dilated that you look like a really bad junkie. And, you have to wear your sunglasses indoors and take the arm of my other half to lead me back to the car. I was worried about running over little kids and old people.... But that much light coming through the eyes is not fun!!! My eye doc is so sweet... Considering I saw her every 2 weeks for the first 3 months of my diagnosing bout of optic neuritis and then have seen her every 6 months since then for tests. She said she could not even see the scar tissue on my nerve but last time she could see it. I'm still testing at 20/20 as well!!!! She always asks about how the MS is going and how my neuro is and what treatments I'm doing. She's not the designated eye specialist for those of us with MS but I don't want to change and unless I start having more than just the optic neuritis issues I'm not going to change. I know she's got tons of patients but she and I still joke about that first day we met. I just remember her taking me time to personally walk me back up to the neuro's office and giving me a true, full body hug and giving me her pager number if I had any issues.... They might be doc's in a box but they're damn good docs in those boxes!!

I still feel so lucky that I've got my vision back. I've read about so many stories where people don't get their vision back or don't get back enough to return to the work force. And, considering I had zero sight in that eye and severely reduced peripheral vision in my other one...

Anyways, another doc's visit down. I should have started counting.... I'd have to be in the triple digits by now!!! AHHAHAHAHAHAH Back to the back doc on Thursday and then Super Bowl party on Sunday!!! WOOO HOOO!!! GO STEELERS!!!!!

Yet another visit....

To the doctor delayed. Halfway to the neurosurgeon's office this morning around 9, his nurse called and said they needed to delay the appointment because my doc got called into an emergency surgery this morning. Doing what he does - that could not have been a good thing and I sent a little prayer up to whomever he had to open up. They said they could fit me in around 1230. Around 1130 the nurse called again saying that he was actually still in surgery and they were having to re-arrange the afternoon appointments now and could I re-schedule. Sure but I still need to get to see him next week....

Sooooo, not only do I have my horrible vision field text next Thursday afternoon ... If you haven't been through one or had the pleasure of experiencing a bout of optic neuritis... UGGGGHHHHH!!! I get to visit the neurosurgeon in the morning and the ophthalmologist in the afternoon. Let me tell you just now excited I am!!! Can't you picture me dancing for joy? My whole 80s sway back and forth - being that's about the most jiggy I can get with it right now!!

Do all chronic diagnosises require that many doctor's appointments? One of the only reasons I own a PDA capable phone (besides to get rid of carrying both a cell phone and PDA) is to keep track of all the dang appointments. My neuro (logist -not surgeon) likes to schedule appointments several months in advance, as well as the MRI's a couple of weeks before that... My partner's chron's doesn't require that much - she's got one of those meds that does require liver functioning testing (all of the current/former interferon users know about this and I used to be one!) every 3 months but doesn't really have to see her doc unless a flare gets out of control. A friend of mine with RA only calls her doc if she's got a flare she can't get under control. She went about 2 months ago and that was the first time she's seen him in about 3 years!

Are we as MSers wusses? I don't think so but I think we're viewed as "frail". That might not be a bad thing and I don't know a lot about some of our fellow immune-related illness sufferers like lupus and (I'm having a blonde moment right now and cannot for the life of me think of some others and don't feel like taking a ride on the Google train) others... but do they have to see their docs as much? I can't imagine having to do it without my insurance and I'm sure I would decide when/if my symptoms/issues were worth the $300 co-pay.

Now, my NP in my neuro's office pegged me pretty early on as being not totally trust-worthy in relaying any issues/symptoms I have. I got yelled at last August when I just happened to have that appointment when I lost use of my right leg.... That's when she reminded me she wanted me on the 3 month plan for a little longer. I haven't been back since then but that's because of Ike and a little back surgery. I do need to make that appointment with them - I really like'em and I have to get back to the office by July as that's when my Copaxone needs renewal!

Getting back to that "frail" idea though.... I think we get viewed that way by the people we disclose our dx to as well.... I didn't know crap about MS before my dx... even with a prior brush with it being mentioned after a lesion-viewed MRI 5 years prior to my Dx. Luckily I didn't even think about being a weaker person until I started reading about it. Hell, one of the first things out of my NP's mouth to me and my sister in law (who was at the appointment with me - being blind makes it hard to drive!) was that I was not their only cop they were treating with MS, and they even had a few fire fighters... Talk about playing with fire!!! Can you imagine?? My best friend's a fire-woman and I've put on her gear - in her air-conditioned condo and I was sweating buckets!!!!

Getting over that "when's the next freakin' time I'm going to lose function of a limb or eye" is my biggest weakness with MS. I'm battling real physical weakness as a result of my back surgery but that is something I know exactly how to overcome. I've developed some short-cuts in my routine that help me conserve my spoons! I know when I can and can't push myself. When I'm in "frail" mode is usually when I'm actually more likely to push myself to far - isn't that natural??!?! Screw it - I can do (fill in the blank)!

SIGH! Enough of that - Bones is about to start and I can't wait!!!!!!!!!!!!! : ]

A need for inspiration...

What's your Mt. Everest? Is it your wheelchair? Is it the numbness that keeps you from doing the normal activities? Is it the fatigue that bums you out because you just can't get up to even go to dinner... Sometimes our obstacles are only anthills while they do become Everests...

I actually had read about this woman named Wendy Booker in a magazine in my neuro's office early on. I had forgotten about her story... which I found again on Health Central's website! Here's a link to her website and story... Wendy Booker

Amazing!! Screw wanting to be like Mia - I want to be like Wendy!! I need to find a mountain to climb!!! Hey, our new president called on all of us to do what's right and challenge ourselves to be better persons. I think we are all better persons when we feel better about ourselves. Who the hell feels like caring about something/one else when we're in the blahs... It's not right but it is fact.

I can't wait to get the doc's visit out of the way on Thursday so that I can get my arse in the pool and make myself better....

Mondays....

are really great when you don't have to go to work! I'm sitting at home watching Ellen's continuing quest to get George Clooney on her show. I watched football all day yesterday - much to the honey's delight! LOL I was very happy that Arizona won and now we know who's going to the super bowl. YEAH! We're hosting the party this year, but there's only a few of us that actually care about the game... me included!

Nada much else going on.... Well, that's not true. I go back to the neurosurgeon on Thursday. Have some pain coming back in the back and buttocks that should not be there. I'm very pissy over it. I'm fine as long as I only have to walk on a forward only path, very slowly. But, ask me to pivot or switch directions quickly and it's not a pretty picture... Okay, I've got to go on a shiny side-note here... I've got Ross' voice in my head screaming "PIVOT, PIVOT, PIVOOOOOOOOOT" and then the genie in Aladdin saying "It's not a pretty picture"...

Okay, I'm back! I really hope I'm just being paranoid and this is normal. However, I don't think my back should be spasming like it is and those pain points are in the same spots prior to the surgery.... We'll see what the doc says. I'm wondering if he's going to order an MRI or CT or something to see if there's anything floating around back there still... I'm trying not to be tooo worst-case scenario in my thoughts but it is hard... and it does make it easier to laugh at one's self afterwards. What happens if there still is stuff that's floating around and they need to get it out?

I don't want to go through any type of surgery again... I don't want to go through that again!! I'm wondering if my best case scenario is just that I've got a pissy back and I'm going to have to learn to live with some pain... I'm sure that's it. I'll just get to the doc and have him tell me I'm being paranoid. : ]

I had a point when I started this entry and then I lost it very early... and then I don't have it back but thought of something else. I was watching the previews to some new tv shows and one of them is about a woman with multiple personalities. The director/producer of this show is Steven Spielberg. He mentioned something to the effect that everyone has multiple sides to themselves, it just isn't usually so distinct as to interrupt their daily lives.. meaning it's not a mental disorder as much as everyone's way to fit into different sides of their lives.

I think I have a very distinct work side of me, and I think most of the people that know me would agree. In some ways, it's very obvious. I hardly wear make-up. I should - lord knows the size of my pores I inherited from my father on top of the extremely fair skin don't make for a good combo. I just don't - especially at work. When I was on the streets in uniform I just couldn't bear crap running off my face. Now, even in plain-clothes, I just don't see the need to make myself different for work. Everyone asks me if I have court if I come to work with make-up on, because that's one of the few reasons I would.

Another reason I distinguish my work self from everyone/thing else is because of what I do. When I was on the streets, it was a little easier just to talk about calls and reports and the occasional exciting event. Now, doing what I do - well, I don't really want to bring that kind of kharma home. Do I need to vent sometimes, oh yeah - and that's where I'm lucky to have support for when I do need to bring it home.

I think the big difference between us having a "work" category for ourselves is the fact that our core remains the same. I'm still the hyper, blonde, German-Irish girl that tries to remain a Toys R Us kid at heart. I don't qualify as the girl next door but I lived across the tracks from that girl!! (Remember by trailer park references!!! LOL) And, now I've been working on incorporating my MS self into my work and home self. I'm struggling lately with integrating my MS self into work. I know my back is not technically an MS flare - it's acting like it. I'm struggling with it...

Everybody at works knows about MS... they have from the beginning. I think most of them have - I dunno, forgotten is the wrong word but it's not the 1st thing people think anymore when they see me. Which is good because that was an akward stage for a while right after I came back to work after my initial diagnosis. Now, with my back, I think it's come back a little into the fore-front. Even my co-workers possibly wonder if I'll be around to deal with stuff or help them out. It just set my mind to wonderfing about those kinds of things - about our different selves. Hell, I'm even a little bit of a different person online - I'm a lot more negative here - it's easier to vent about the crap that's bothering me here - y'all know more what I'm going through anyways and it lets me be my "normal" (heavy emphasis on the quotation marks!) self offline.