Tuesday, December 23, 2008

Good Lord what next??

*sighs*... so I went to the neurologist again today. As I already knew, my spinal tap was positive for Multiple Sclerosis. They are starting me on Copaxone, a nurse is coming to the house to teach me how to give myself the injections next week. I can deal with this...I was expecting this, and am actually relieved to finally be starting treatment.

But then she started asking me all these questions- questions that have nothing to do with MS. About any joint pain, rashes, family medical history, etc. I answered yes to the majority of them, getting more and more nervous about where this conversation was going with every passing second.

Finally, she goes "well.. I have to send you to a rheumatologist. You not only showed the protein for MS in your spinal fluid, you tested positive for Lupus as well".

Excuse me??? And yes, that was my response to her. Lupus? You have GOT to be kidding me. She went on to tell me how the original blood work in the hospital showed some ANA thing in my blood, which is positive for Lupus. (new news to me, hence why I changed neurologists) So as a precaution, she ordered my spinal fluid tested for it as well. Low and behold...it came back positive. She said sometimes one disease can mimic the other- and that is a possibility. But what concerns her is the fact both the blood work and spinal fluid came back positive, and the symptoms I have had over the last couple years that are more of Lupus than of MS. Because with the original MS diagnosis- I still had some odd symptoms that didn't fit. Her concern is now that I actually developed Lupus right around the time I had my son, and developed MS afterward.

So I came home, and of course researched Lupus like crazy. And... I just cringed the more I read. Way too many symptoms that aren't MS at all- but are definitely Lupus. My stomach turned as I read how MS is one of the diseases people with Lupus are prone to developing as well.

Here is Wiki's definition of Lupus:

Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that can be fatal; however, with recent medical advances, fatalities are becoming increasingly rare. As with other autoimmune diseases, the immune system attacks the body’s cells and tissue, resulting in inflammation and tissue damage. SLE can affect any part of the body, but most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system."

...and I found this:

"Can a lupus patient get another autoimmune disease?

Yes, & it is quite common. Antibodies can develop against a variety of organs, tissues or glands, resulting in many different diseases. Among the most frequently experienced autoimmune diseases for a lupus patient to have are Sjogren's Syndrome, multiple sclerosis, & Hashimoto's thyroiditis."

So...yeah. This is not looking promising at all. Even my dad, who is very honest and who's opinion I value greatly especially on medical issues, said he thinks from the tests and symptoms I likely have both Lupus and Multiple Sclerosis.

I can handle having MS, I really can. I've accepted this. But Lupus too? I have to wonder who's Wheaties I pissed in for God allow me to have both. I think what scares me most is said quite plainly in the first line of it's definition: "It can be fatal". So I think to myself, my God, if it can be fatal all on it's on, what if you have MS with it too????

I am....struggling. Really really struggling. I am more afraid now than ever.

I'll write more another time soon... when I have had some time to wrap my brain around this.


Thursday, December 18, 2008


Well... it's been another trying couple weeks.

I had my spinal tap done last Wednesday. Truth be told, the actual spinal tap wasn't bad at all, in fact the anesthetic hurt worse than the actual tap. Now... afterward? That... is a whole different story.

After a spinal tap, you have pretty much not get out of bed for 24 hours except to use the bathroom, drinks tons of liquids, and load up on caffeine. The reason being is takes time for your body to regenerate the missing spinal fluid, and the imbalance causes headaches whenever you doing anything but laying down. I did this- exactly as directed. The first night, my back went into spasms. It was pretty bad- at one point I literally got stuck, unable to lift my head or roll over, because it hurt too bad to breath let alone move. I ended up in tears, yelling for Wayne, who had to help me just roll into a tolerable position. After loading up on muscle relaxers and Lortabs, I was finally able to fall to sleep.

The next morning... I sat up...and WHAM. I am not kidding you, it was like someone smacked me in the back of the head with a 2x4. I've had migraines in the past, but this made the worst migraine I've ever had feel like a trip to the park. I was instantly nauseous, unable to tolerate any sounds or light at all. After staggering to the bathroom, Wayne helped me back in bed, then proceeded to put two blankets over the window to blacken the room and put a bucket next to the bed in case I hurled. When I laid down- the headache almost instantly went away. But the minute I raised my head even slightly- it was simply unbearable.

Well... after about 24 hours of this, my doctor told me to go back to the hospital. They wanted to do a "blood patch". The headache was the result of a tiny leak of spinal fluid from the tap, and they wanted to take my own blood and 'patch' the leak. So... back to the hospital we went. They then proceeded to take 40cc's of my blood (which, is quite a bit actually), and inject it into my spine. The good news? It literally cured the imbalance and headache instantly. The bad news? I now had not one, but two, black and purple bruises on my spine. If my poor back wasn't already totally jacked up from the tap- the patch definitely finished it.

I spent the next few days doped up on muscle relaxers, and my back slowly begin to relax and heal. Then yesterday, I had to go into my neurologist so she could test my muscle and nerve response. Ok fine, I'm thinking. Little electrode thingies, a little tingle, no biggie. And, for the nerve portion of the test, I was right. Imagine my surprise when she pulled out what can only be described as looking like a sharp metal shish-kabob skewer connected to a wire and announced "ok Melissa, now we need to check your muscles".

I just stared a moment, and finally responded "you're going to stick me with that, aren't you?" That is when she explained it needed to penetrate the skin deep enough to touch the muscle for accurate results. Ohhhh yay me- more poking and bleeding, and this time I get an electric shock with it too! *rolls her eyes sarcastically* And it wasn't just a few spots, either. I now have tiny bruised welts all over me from everywhere she stuck. One on each foot, one on each hand, three on each arm, four on each leg, two on the back of my neck, and four on my back. When she did my back, she commented "oh there's your lumbar puncture site- I can tell from the bruising". Mind you, I really really like my neurologist a lot. She's a very compassionate woman with a great bedside manner as well very very good at what she does. But at that moment...when she made the observation about my bruised back... I couldn't even verbally respond, I only sighed and nodded. Why? Because in my immense frustration and aggravation, I could literally feel my sarcastic smart-assed nature about to take over. What I wanted to say was "No shit, Sherlock. Maybe with these new bloody bruises you're adding back there, you can play a nice game of connect the dots!" Of course, I didn't say that, but man I wanted to.

So, here I am. My back is still achy but much better. The bruised welts are only an ugly green color today, an improvement from the lovely bluish-purple they were yesterday. And yes, I survived these latest rounds of tests. Forgive me for the pity party that is about to follow... but I swear to God, the next person who comes at me with a needle, I am going to jam into their freak'n eye. I just...blah. I'm so tired of people taking blood, injecting me, withdrawing from me, poking me... I feel like a human pin cushion. I am seriously starting to lose track of all the times I've been poked, made to bleed, scanned, probed, electrified, and examined. I am TIRED. I used to have a bit of a fear of needles, but now, I honestly don't even flinch. It's just like another part of my life. Everywhere I go someone is sticking one in me. I honestly can't remember the last time my arms weren't bruised from IV's and blood tests.

*Sighs*... there, I've had my little ranting pity party. I know I'll get over it, and I know this is all necessary, I'm just once again struggling a bit depressed. You can accept something like MS and all the tests that come with it- but that doesn't make it any easier to live with.

I go back to my neurologist again next week for the spinal tap results and the results from yesterday tests. I already told her that my opening pressure on the tap was 34- which concerned her. That's pretty high I guess, which means my brain has some swelling. So, with that in mind, I'm not real hopeful for the rest of the results. Regardless, I will write another post sometime on 12/23 to let y'all know what the actual results were.

Have a great day all...despite my little temper tantrum here :P

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 :

Tuesday, October 28, 2008

Yay I can see!! XD

I am typing this without one lens covered, and with both eyes open! YAY!!!!! *does a happy dance*

Yup my attack is subsiding slowly. Last night, I realized my eyes were trying to focus more than ever. So I reluctantly removed the tape from my lens. Now mind you, my eyes were still going from double to single, but I knew they were really trying to focus and work together. Today, I haven't had to tape my lens all day. I can even drive! Granted my vision isn't "normal" yet, for instance I can't read street signs at all, and have a very hard time with lights at night (traffic lights, tail lights, etc). I had to increase my font on my PC too- I simply can't read small print. BUT... at least I can see just one of the world again... even if it is still a little blurry. I just have to close my eyes and rest them every few hours because they start throbbing and aching from the strain of trying to relearn to focus.

And, I notice a definite improvement when walking, too. I don't feel nearly as unbalanced and unsteady. I am still struggling with going up or down steps and maneuvering tight areas, but at least I can walk across a room without feeling like I'm gonna fall on my bottom.

Heh... I can actually pass off as a "normal" person again at the very least. ;)

So I am keeping a log of my attacks, what they consist of, and how long they last. This one it's been two weeks today since my vision went double and I was vomiting in the ER from dizziness. If I had to guess, I think I'll have remitted completely within another week. That's not bad really, considering my last attack lasted a good 6 weeks. The one before that 8 weeks, and that one actually overlapped the second one.

Anyway, I'm keeping this blog short as I want to go watch a movie with Wayne and Morgan. But, I wanted to share my happy news with you all. :)

Be well All!! -Mis

Monday, October 27, 2008

The funny side of sadness

Ok, anyone who knows me at all, knows I have a warped, sarcastic sense of humor. And yes, despite my fits of anger and crying, I even have to laugh at this mess at times.

Every man out there knows the rule to the dreaded "do I look fat?" question from their wife or girlfriend. You answer fast "Noooo". You must sound convincing, if not she accuses you of lying and looking at some bimbo you passed in the grocery store two weeks ago. You must answer immediately, or you had to think about it and therefore still must be lying and now you're condescending too. It's a tricky one for guys. Well... did you know there's apparently an MS twist to this slippery slope?

Picture this: Your wife is walking through the house. You watch her stagger back and forth as she goes, hear her curse up a blue streak as she rams her hip into the kitchen counter for the 5th time that day alone. She then wobbles into the living room, and she looks like she's about to fall over backward so you tentatively reach out and gently steady her. At that point, she glares at you. "Do I look drunk to you?" GAAAHH!! I mean, c'mon, she looks like a frat boy three sheets to the wind who is about to go hurl in a corner. But, the good husband knows. He immediately sees the danger in this question and answers fast "Noooo". He sounds convincing, because he knows if he's not she going to accuse him of lying and looking at some bimbo he
passed in the grocery store two weeks ago. He answers immediately, or he would've been accused of thinking to hard and lying and now he's condescending too.

Scenario #2: Your wife is trying to see the TV. She has tape over one of the lenses of her glasses so she doesn't see double. Now, she is determined to make her eyes focus. So she's looking under the glasses, looking over them, taking them off and opening her eyes wide like a freak'n owl one moment then squinting the next. After a few minutes of this she gives up, puts her taped up glasses back on and looks at you through the untaped lens with a heavy sigh and says "I look l like a retard, don't I?" You answer fast as lightening with a gentle smile "No baby, you look beautiful".

These little situations are my marriage lately. God bless my amazing husband, Wayne. He handles all my moodiness, crankiness, fear, and defensiveness all in perfect stride. I mean, the man must be some kind of super hero, because he doesn't even flinch. I honestly don't how he does it, but whatever his secret is, he has the uncanny ability to always make me feel better. He makes me feel secure even when I am feeling more scared and vulnerable than I ever have in my entire life.

So yeah, I am seeing humor in this fiasco MS has caused in my life. But more importantly, I am seeing more than I ever that I truly have the most amazing, wonderful, loving husband on the planet. To Wayne- thank you, Baby. Thank you for loving me just as I am.

Friday, October 24, 2008

Stages of acceptance?

Who knew there would be stages of acceptance of having MS. Apparently, there is. Or at least there is for me. I spent the first two days just crying randomly. All you had to do was look cross eyed at me and I'd start bawling. Today... I am just pissed off. I am angry, hostile, cranky, and just not a fun person to be around at all.

My eyes do seem to be getting better- I can force things into focus for short periods of time. I spent about 20 minutes just staring at the top of the curtain in our bedroom. Why? Because I found if I looked upward and slightly to the left- I could actually see "normally". Of course the minute me or my eyes moved even the tiniest bit things went double again. Today, when I woke up, I noticed the double images are getting closer together. At times, there are even quick seconds of only seeing one. I am really praying I can see normally by Thanksgiving.

Yet... I am so angry. I feel like this is taking everything from me. I can't see, and as a result I walk around with tape over one of my glasses lens looking like a complete tard. I can't walk without staggering like a drunk person, making me look that much more idiotic to go along with the taped lens. Lord knows I can't drive, so I rely on Wayne to play chauffeur to me. So really, I've become a prisoner in my own home, out of embarrassment just as much as inability. I think to myself, this can't get worse. Yet...the reality is...it most certainly can. Much much worse.

I look back, and I also realize I've had this for at least 2 or 3 years. It just didn't fully reveal itself until now. All the weird health issues I've been dealing with suddenly make sense. It even turns out more than half the issues I've always blamed on my tummy problems were actually because of MS. That alone is depressing as hell, because it means even when I do finally get my stomach fixed, a great majority of my pain and discomfort will remain. So much for my high hopes of getting the surgery and living a 'normal' life, huh? *sighs*

Oh and I learned something else- there is a symptom they call the "MS hug". Whoever thought of that name either never felt it, or has the sickest sense of humor ever. If I ever find him or her, please remind me to b*tch slap the hell out of them. Anyway...this "MS hug" feels like someone is crushing your rib cage. It's often mistaken for panic attacks or heart attacks. I can't tell you how many times over the last year I've crawled into bed, close to tears, saying to Wayne "Urgh it hurts to breath... my hernia has never been this high. I don't understand it". Now I understand. It's not my hernia and it's not getting higher. It's the "MS hug".

Right now, I think the "MS hug" and the fatigue are going to be the biggest ongoing issues. I have been chronically exhausted for about 2 years now. Lately, it's so bad that I actually feel nauseous I'm so tired. It's kinda crazy, really. I can sleep for 12 hours a night, and still need a nap by dinner time. I am really praying once I get on the injection regimen that both will improve at least a little.

I am trying so hard not take my anger and hostility out on Wayne or the kids. I think that's why I sat down to blog this. I don't know why, but I've always found it therapeutic to put my thoughts and feelings into writing. It's almost like if I get out for the world to see, then somehow it's releasing it so it can't eat me up inside.

So...that's where I am today. Seriously ticked off. Consider yourself warned. *chuckles*

Until next time... be well. -Missy

Wednesday, October 22, 2008

How life changes in a blink of the eye...

You know, it's almost ironically funny. I made this blog...and did nothing with it. Yet I didn't just delete it either. I figured one day, I'd have a reason or purpose for it. Just one week after my first brief post... life gave me a reason for this blog. Be careful what you wish for. *chuckles*

Rather than spend endless hours on the phone or emails, I will be tracking my journey and health here. The reason? I just found today I have multiple sclerosis, or MS. To brush up on everyone's medical lingo, MS is an incurable disease that effects the brain and nervous system. Essentially, it means my immune system mistakes certain proteins found in the brain's myelin sheath as a virus and attacks them. The mylein sheath is a fatty layer covering and protecting the brain, and when this is damaged, it caused various neurological issues. The word sclerosis means "scars", which is referring to the legions on the brain where the mylein has been deteriorated.

For those that are going "what the hell? when did this happen?"....

This started about 2 1/2 months ago, August 2nd to be exact. I got up to go to the store and suddenly my left leg went numb and weak and I got super dizzy. This continued to happen, so I went to the doctor. He did a ton of blood tests, all came back fine. That did get better after about a month, but then my left hand felt weak. It was as though my small motor skills just went to hell. Dropping things, unable to type correctly, just simply as though what I was telling it do wasn't what it actually was doing. I went back to the doctor, this time he ordered a CT scan. Again, all came back fine.

That too did get better after about a month or so.... but then I started getting dizzy again. And it seemed like my eyes were doing weird things, they almost felt 'shaky' or 'wiggly'. I said to Wayne I thought the dizziness was my eyes, not even a week later, I woke up one morning with horrific double vision. For those of you that have never experienced this- you may as well be blind because EVERYTHING is double. I panicked, and told Wayne I needed to go to the emergency room. They ended up admitting me, and doing yet another round of blood work as well as another CT scan with contrast. They again turned up fine, but that is when people starting whispering those two letters "MS" around me. Upon my release, I went to a very good ophthalmologist who thoroughly checked out my eyes. He confirmed what my gut was already telling me- my eyes were fine. The problem was my brain.

I then went in for an MRI. That was this past Saturday. And today, I went into my doctor's office where it was confirmed I do in fact have multiple sclerosis. I currently have active lesions on two parts of my brain, hence the double vision and dizziness. It was one of those surreal moments. In my heart, I'd known for about a week I'd had this. But when I saw the expression change dramatically on my doctor's face as he read the MRI report, the reality hit me. I then listened to his office staff rush around to get me into a neurologist as soon as possible, heard them saying when they thought I was out of ear shot "she has MS, this can't wait", and saw the sad looks on all their faces as they tried to force a smile when they came into my room. It was at that point I just looked at my husband and started crying. Thinking you 'probably' have something like MS is a lot different than that confirmation that you DO have MS.

Now, my journey begins. I picked the word "journey" very intentionally. I refuse to let this beat me. I am willing to do whatever I must to make my body as healthy as I can to fight future attacks and recover from them. My life is about to change dramatically, in some ways, for the better. I guess I am trying to see the good in all this, and the good is at least I finally know what's wrong with me. I know who my opponent is- and I know what I must do to beat the crap out of it.

So...that is what this blog is becoming. My journey against MS. I'll blog about what happens both good and bad here. You'll hear how my health is doing, and I'm sure you'll hear more than a few rants and pity parties as I struggle to come to terms with all this. I figure this will be a good way, because not only can I keep everyone informed, but I can use my writing to deal with my own emotions as well.

Until next time... be safe, be healthy, and may God always watch over you. :) -Mis