Tuesday, November 25, 2008

Being Thankful

With Thanksgiving being only two days away, I find myself looking at my life, and asking "What am I thankful for this year?" Surprisingly? Lots.

First and foremost, I am thankful for my family. Not only my husband Wayne and children Morgan and Joshua, but my Mom, Dad, my brother Andy, and my nephew Matty. Everyone has been so supportive of me during these last few years. Heck, my parents and brother have been my whole life. I look around me, and I know how truly blessed I am to be surrounded by such unconditional love and people pouring their strength into me- especially when I am at my weakest. I talk about my amazing husband and kids here in this blog a lot- you all know how awesome they are. But I don't mention my parents and brother enough.

My Mom... bless her heart. I put myself in her shoes, and I can imagine the pain and fear she must feel seeing her daughter fight a disease like MS. I know I'd have had nervous breakdown if I had to watch my own daughter go through this (God forbid). Like all good mothers, she makes me crazy hovering. LOL. I say to her at least once a week "Mom, I'm a 35 year old grown woman, I think I can handle it". She offers to drive me to appointments, take time off work to take care of my kids while I go for testing, take me shopping when I can't go by myself. Heck, she even does our laundry for us to save us the expense of going to a laundry mat. But I know all her hovering is because she loves me so much, and in her helplessness of having to watch her child struggle, she simply wants to do all she can. Thank you, Mom. I may not always show it, but I know you try so hard for me, and I love you very much.

My Dad... I have always been blessed to have an exceptionally close relationship with my father. Even from thousands of miles away, my dad is always there support me and listen. I can not tell you how many times I've called my dad either raging or in tears... and I always hang up the phone feeling better and calmer. My dad is, and always has been, my 'voice of reason' in life. He taught me what unconditional love was by his example from before I could walk or talk. My whole life, I knew in my dad's eyes I was 'perfect'. That's not to say he didn't know my faults and try to help me through them- but through my faults his unconditional love for me made me 'perfect' just as I am regardless. He's even helped us out financially more times than I can count. I'd be lost without him. Thank you Dad, for giving me such a precious gift of yourself in life. I love you.

My Brother, Andy... it's funny, growing up we hated each other. LOL. Oh Lord we'd fight nonstop and horribly. Then one day... we grew up. Now, I am so blessed to be able to look at my brother, and know not only is one of my very best friends, but would be even if he weren't my brother. I have so much respect for my brother, he's raised my nephew Matty alone since Matty was a year old. He has struggled and fought so hard to give his son a good life, made so many sacrifices, pushed himself to exhaustion in the name of love for his son. I tell ya what, if there were more fathers out there like Andy, this world would be an infinitely better place. And even through all his own life struggles, he is always there for me, even more worried for me than he is himself. Andy is truly the type that would give you the shirt off his own back in the middle of a blizzard. He is by far, one of the most unselfish, giving, loving people I've ever been blessed to know. How lucky am I, to be able to call such an outstanding man both my brother and best friend. Thanks Andy, for growing up to be someone that inspires me daily to better myself, and for always being there for me. I love you.

Multiple Sclerosis has changed my life forever, things will never be the same. But even through all the fear, anger, and sorrow I struggle with as I cope with this disease, I still have the ability to look around me and see how truly blessed I am.

Happy Thanksgiving, Everyone! May God bless you all with as much love in your life as I have.

Wednesday, November 19, 2008

Finally... a doctor with a brain as well as a heart

I am very pleased to say, I have finally found a neurologist that appears to have a heart to match her brain. I went to see her this morning, and the entire experience was a stark contrast to my visit to the first neurologist a few weeks ago. I wasn't left waiting for hours, I wasn't shuffled around, and *gasps!* she even listened to me when I spoke. (yes, don't faint from shock, she listened!)

She went over my medical history not only since August when this really started, but the last couple of years. She said she's certain I've had this at least 6-8 months, if not over a year. She also said even though the MRI didn't include my neck, she's be willing to bet money I have a lesion on my spine at the base of my skull as well as the two on my brain. It was almost a little saddening, as during her exam she found symptoms I didn't even know I had. For instance, I apparently have blind spots in my peripheral vision. It's also a good thing I don't drink, as I would never pass a field sobriety test by a cop.

I do have to have a spinal tap on December 10th. I was really hoping to avoid that. *sighs* The doctor said while she's certain I do in fact have MS, she wants to be clinically certain as well before putting my body through the rough MS medications. She also said this would help me get disability, as they won't be able to deny it on the basis of tests left undone. Heh, I told her about the last doctor wanting to test me for Lyme's disease, and she said nothing but shot me the ultimate 'are-you-kidding-me?' type of look. I just chuckled and go "yeah I know, I so seem the outdoorsy let's go hang out with deer type, huh?" She also thought the tests he wanted to do on my eyes and muscle strength were pointless as well. As she put it "We know you have MS. We know you have optic neurosis and muscle weakness. The extent of both is irrelevant at this point, and putting you through more tests just delays the treatment you need"

That... was what really won me over with her. No needless tests just to milk more money.

The final thing that won me? In all of this mess, she is the first doctor to sit down and actually explain what Multiple Sclerosis is to me. Yeah I already knew, but it was still so nice that she took the time to explain. She added that she's glad to see I'm going into a remission right now, because that helps her to rule out Primary Progressive and be confident I am, in fact, Relapse/Remitting. She said at our next visit after the spinal tap results, we'll discuss the medications and what I can expect from them.

Overall, I'm feeling very optimistic. I already have a great primary care doctor, and now I have a good neurologist as well. To me, that alone is half the battle. Finding good care that goes beyond my physical symptoms to the woman actually experiencing them.

Be well all!
*hugs*- Mis

Saturday, November 8, 2008

...some relief

Finally, this latest flare-up seems to be subsiding. The fatigue is still bad as ever, but physically I actually feel better than I have in almost four months. Even the 'unbalanced' feeling isn't as severe. I do have some minor vision issues, but nothing that is really bothersome.

I am, however, still having some cognitive issues, though thank God even that seems to be subsiding a bit. I don't feel as easily overwhelmed and confused. My short term memory still really sucks, but I've been like that for over four months now so that's nothing new. I still can't multi task for crap, and when I try to I get very agitated and frustrated. But I still feel a bit... I guess "clearer" mentally than I have in a few weeks.

I had a very depressing conversation with a friend who's had MS for about 16 years. I'm still not sure what I think of it. One thing he said specifically hit me really hard. We were talking about MS vs. other diseases like cancer, aids, etc. Things people associate with a death sentence, whereas people can live many many years with MS, and even a normal lifespan. But then he something. "The difference between MS and what people consider terminal diseases, is they die at a pace it's obvious to everyone that they are in fact dying. With MS, we are dying, we just take a really long time to do it."

I thought about that. I've continued to think about it a lot. Am I, in fact, dying? Just really slowly? I guess I never considered it until he said it. I know in advanced MS, the muscle weakness can go as far as effecting the heart, diaphragm, really any and every muscle in your body. I know it can be a debilitating disease, leaving people speech impaired with spastic atrophied limbs in wheelchairs. But I also know these occur only once when the disease progresses past the relapse/remitting stage. Thankfully, I am relapse/remitting. Hence what appears my current remission that is beginning.

So at what point does MS become fatal? It almost seems as though no one wants to call MS a fatal disease simply because people live many years, even decades, with it. But the reality is, my brain IS slowly but surely being destroyed with each new lesion that forms on it. I see the effects it has on my body already, and like it or not, the reality is someday be it two months or two decades from now, I won't go into remissions anymore. So is my friend right? Will my death certificate someday read "cause of death- complications from multiple sclerosis"?

Yeah I know, not a very chipper post. I'm not writing this to depress people. I guess I'm writing this in the hopes seeing it down in words will help me come to terms with it a little more. I have accepted the fact I have this disease, but I am still dealing with a lot of mixed emotions because of it. Thankfully, today I am at peace with it. So I guess I'll enjoy today while it's here.

OOhh oohh!! Totally unrelated to ANYTHING to do with health or my MS...but guess what came out in theaters yesterday? Madagascar II!!! YAY!!!! The first one is hands down my favorite Disney movie of all time. I swear I still laugh so hard I cry every time I see it. So tomorrow, Wayne and I are taking the kids to the theater to see it. Sadly, I am far more excited about this than either of the kids, even Joshua. *laughs* But hey, it'll be a fun afternoon spent as a family. Even if I do embarrass Morgan right out of the theater laughing and snorting loudly like an idiot. Hahaha! Hey I don't care if that makes me a dork- the movie is freak'n hysterical and I can't wait to see it!! :D

Ok nap time for me. Be well all. :)
*hugs*- Mis

Wednesday, November 5, 2008

Let the frustration begin...

Urgh... I don't even know where to start. The last week has been the definition of frustration. This could get long winded, just thought I'd warn you in advance.

First, while 'physically' I am doing tons better, cognitively (my mind) is not. I've had short term memory problems on and off for about 3 months now. Fine, I can deal with that. But now, I am beginning to feel like my brain is revolting against me. The first thing I noticed was I was having a hard time finding words. Even if I found what my brain thought was the right word- it would be close but not correct. For example, I kept referring to my daughter's birthmark as a tattoo. That would be funny- if I'd had realized it after the first time. But I was completely oblivious until my husband pointed it out. I went to lunch with Wayne, and ordered blue cheese for my gyro. Not... at all...what I wanted. What I wanted was feta. It's like my brain picks it word similar in meaning or idea- but it isn't the right word and I have no idea until someone points it out. Typing has proven a whole different set of issues. Even as I type this, I am backspacing and correcting like crazy. I keep wanting to use 'red' instead of 'read'. Or 'right' instead of 'write'. Or I misspell words. Like recently I was trying spell 'tile'. I retyped it four times as 'tial', and was truly baffled that spellcheck was saying it was incorrect.

Those... believe it or not... are the easier issues to deal with. What's proving to horrible is my brain's apparent inability to focus. I used to be the queen of multitasking. I could cook dinner, do dishes, talk on the phone, and yell at Josh to leave the cat alone all at once without so much as batting an eye. Now? I can do exactly one thing, and one thing only, or I get completely overwhelmed and confused. I found out the hard way this goes for 'sounds' or conversations as well. I was at my mom's house this past Saturday for Morgan's birthday. My mom, her husband, my grandma, Josh, Morgan, Wayne, and myself were all there. Mind you, anyone who knows me knows I have a massively huge family. So by comparison to the 30+ people gatherings held on my dad's side of the family- this was really small. Yet, just this small gathering sent me into almost a panic attack. Let me try to explain this.

Normally when people are in a room with a crowd and multiple conversations going on at once, you simply look at the person to whom you are speaking the rest becomes background noise. We do this without effort, or even realizing it. I, apparently, have lost that ability. I was in the kitchen and everyone was talking at once. I was looking at my grandma trying so hard to listen to what she was saying- and I couldn't. It was like every voice in the room was amplified in my head, and I couldn't focus on just one, so none of them made any sense. After about 20 minutes of this I got completely overwhelmed and ended up bolting to the patio desperate for quiet. Wayne of course followed me, and I just broke down crying. I seem to do that a lot lately. It was just so frustrating. I was on complete sensory overload, and there was nothing I could do to fix it or make it better. It was just...awful.

I've decided insanity would be a lot better than the issues I'm having cognitively right now. Why? Because a crazy person doesn't know they are crazy. They just live merrily in ignorant bliss. I feel like a crazy person- but I know my mind isn't right. So rather than living in ignorant bliss, I live in a hell of knowing how I was, how I am supposed to be, and how I am now no matter how hard I try to change it.

So... I went to my first of many neurologist appointments today. I told Wayne last night I did not have a good feeling about this one. I actually almost canceled the appointment and just waited til my next one on the 17th, but decided to go anyway. My appointment was at 9am, yet at 10:30 am I still had yet to see the doctor. He finally comes in, and though he wasn't cold or mean, he was rushed. I felt like he wasn't truly listening to me at all. He then tells me he wants to do some tests on the electrical impulses to my limbs, my eye response speed, and a spinal tap. It was when he said spinal tap I went "whoooaaa I don't think so". He then tells me "while he's pretty sure I have multiple sclerosis, he needs to rule out brain cancer and Lyme disease". Lyme disease??? Are you kidding me??? I've never been bit by a tic in my life, hell I haven't even been in a place they are in probably 5 years. And brain cancer? For one, I highly doubt brain cancer would be remitting on it's own untreated as my symptoms do. Secondly, the MRI results very clearly stated "no tumors or growths". What did the MRI say? It mentioned lesions and demyliation (which means deterioration of the mylein sheath) many times. It even mentioned Multiple Sclerosis many times. The very last line of the MRI report was underlined in pen by the doctor that read it, and it said "Results are indicative of the demylitative disease, Multiple Sclerosis"

My primary care doctor say the report, took into account I have about every symptom of MS possible for diagnosis, and said I had Multiple Sclerosis. Now this guy is saying to me he "thinks" that's what it is but wants to rule out things I have NO symptoms of, or even MRI results to suppot. Keep in mind, as I was telling this neurologist about all my cognitive issues (in tears no less), he was very gently nodding and reassuring me they are all very much to be expected "with brain lesions indicating MS as you have". But then turns around and wants to do a spinal tap? I have done my homework. A spinal tap does not positively identify MS. In fact, nothing does or can, it's a matter of having enough symptoms and results that match the factors of it. All a spinal tap will tell you is if there is an excess of protein in the spinal fluid associated with MS. So isn't the fact I am like a text book of MS symptoms enough? Or the MRI doctor specifically saying the lesions are indicative of MS? It was for my primary doctor- why not him?

THEN... he makes the appointments for the electrical impulse and eye speed test. SIX WEEKS FROM NOW! AND tells me he'll see me TWO WEEKS AFTER THE SPINAL TAP!!! This guy wants me to wait a minimum of 8 freak'n more weeks??? Are you kidding me??? I can not go another 2 months untreated. I need to be on medication NOW. This just blows my mind. How can this man think this is even remotely acceptable? I am in hell, and he wants to put me back into limbo just so I can sit and get even worse in the meantime????

So yeah... I am so frustrated and angry right now I can't see straight. (no pun intended on the wonky eyesight, lol) Wayne is livid as well. We both agree to go to the next doctor on the 17th. If she also wants a spinal tap- fine I'll go through with it. But, it will be via her office, not this guy's office today. I just don't trust this guy, and with something as serious as Multiple Sclerosis, I can not be under the care of a man that doesn't listen and thinks making me wait extra months untreated is somehow ok.

That is where I am at... it's not a good place, but where I am regardless. *sighs*

I'll update more after I talk to my primary doctor about what happened today.

Take care all :