No, I haven't disappeared...

Wow. It's been a REALLY long time since I have posted anything at all on my blog. I apologize for that, and I assure you that it wasn't due to a health crisis!

The pic was taken at the Taste of Minnesota last year during the Seether/Offspring/311 concert. Which was AMAZING!

The last year and a half has been a steady string of difficulties, both financial and otherwise. As most of you already know, Ted and I were married last year. That has been the highlight of it all. We have experienced a LOT of financial issues ranging from Ted's pay constantly getting screwed up by the ARNG and his coming off of active duty to no civilian job, to me losing my job in March. A week after I lost my job, I nearly lost my sweet Harley to a burst spleen that was the result of hemangiosarcoma--cancer. With help from my mom (thanks, mom!!!), we bought her some time with an emergency surgery to remove her spleen. Hemangiosarcoma is pretty much a terminal condition. We nearly lost our home and had our power shut off this month, but were able to secure financial assistance through the VA. They also provided us with some food from their food shelf. I finally had to take a break from school as my grades were dropping precipitously, so I have taken spring and summer off and plan to resume in the fall. I have not been able to secure employment yet. My neuropathy has been accelerating--I am now losing muscle in both hands and the pain was becoming so debilitating that I wasn't getting much sleep. My regular doc put me on gabapentin and an antidepressant, which seem to be helping for now. One bright spot has been that Ted went back to work with Braxton Hancock (the company that laid him off over two years ago) two weeks ago. I don't want to elaborate too much on those details just yet; what I DO want to do is share something with all of you--especially those who know me as kind of a cynical, sarcastic jerk. While that is definitely what makes up most of my personality, those close to me (especially Ted) get to see a different side of my psyche on occasion. Below are a few excerpts from something I wrote for Ted. Yes, there was a lot more, but that is between Ted and me ;-)

Music speaks to me. I don't know how else to describe it. It's like I can see the keys and chords. Every note is a vision into an interpretation of the melody and lyrics and every bar is a cohesive explanation of what brings the sounds together to create something representative of the full intention behind the music. That is the reason I have picked up many different musical instruments and always have an open mind to musical interpretation. Anyhoo, the whole point of this is that while ALL music speaks to me, especially that which I have written myself, there is a very small subset of songs from other musicians that dig me out of my own universe and speak even louder. I'm not a very emotional person and talking about matters of the heart like this is VERY foreign to me; I feel that the music that I love is able to stir me up and connect me with emotions I am typically detached from. The first time I heard this song, it reached right into me and reflected the love, frustration, and desperation I try to deal with every day. So, while these words and this melody are not of my creation, I think the music in all its entirety reflects how I feel far better than I am able to express on my own. The band is called The Script, and they hail from Ireland. I think they are very talented and very in touch with the music that is inside of them. It seems that every time I feel overwhelmed by our string of bad luck, this song pops onto the radio. I know it's a coincidence, but it's a helpful one for me and I just keep plugging away.

"For The First Time"

She's all laid up in bed with a broken heart,
While I'm drinking jack all alone in my local bar,
And we don't know how,
How we got in to this mad situation,
Only doing things out of frustration

Trying to make it work but man these times are hard,

She needs me now but I can't seem to find the time,
I've got a new job now on the unemployment line,
And we don't know how,
How we got into this mess
is it god's test,
Someone help us 'cause we're doing our best,

Trying to make it work but man these times are hard

But we're gonna start by
Drinking old cheap bottles of wine,
Sit talking up all night,
Saying things we haven't for a while
A while ya
We're smiling but we're close tears,
Even after all these years,
We just now got the feeling that we're meeting for the first time

[x3]
Oooooo

She's in line at the DOLE*
With her head held high (high)
While I just lost my job but
Didn't lose my pride

But we both know how,
How we're gonna make it work when it hurts,
When you pick yourself up,
You get kicked to the dirt,

Trying to make it work but,
Man these times are hard,

But we're gonna start by,
Drinking old cheap bottles of wine,
Sit talking up all night,

Doing things we haven't for a while,
A while ya,
We're smiling but we're close to tears,
Even after all these years,
We just now got the feeling that we're meeting for the first time.

Ooooo
[x3]

Yeah.....
Drinking old cheap bottles of wine,
Sit talking up all night,
Saying thing we haven't for a while,
We're smiling but we're close to tears,
Even after all these years,
We just now got the feeling that we're meeting, for the first time

ooooo...., yeahh for the first time
(ooooo....), oh for the first time,
Yeah for the first time,
(just now got the feeling that we're meeting...
For the first time)

[x4]
Oh these times are hard,
Yeah they're making us crazy
Don't give up on me baby

{* DOLE is the unemployment line in Ireland}

Today...some Stuff...

So...today. Had my neurology appointment this afternoon. Dr. Giuliani (department of Neurology, University of Minnesota) spent quite a bit of time with me, and he even brought in a colleague midway through the consult. They both feel that it is important for me to see either one of the two neurologist

s that specialize in peripheral neuropathy, and that another EMG is warranted due to the progression of my symptoms. For those of you who may not know, an EMG is an electromyogram. Basically they will be placing electrodes into my muscles and around my nerves to check on how well they are functioning. It works exactly like an electrical circuit--two electrodes (needles) are placed at different ends of the nerves, and they look at things such as conduction velocity (how fast the electrical impulse is carried through the nerve), loss of electrical signal (also known as efficiency, indicating an interruption in the nerve somewhere), and how well the nerves are able to be stimulated. The symptoms seem to point to multifocal motor neuropathy, but there are a few other disease processes that could be present. Starting with the EMG is good. I will also see Dr. Perry, who is one of two peripheral neuropathy specialists here at the U. The neurology clinic here is one of the best in the nation, and Dr. Perry and his colleague Dr. Walk are two of the best in the field. The literature I have read seems to indicate these two are the end-all and be-all of peripheral neuropathy. I have apparently seen them both previously (I do recall seeing Dr. Walk, and Dr. Perry conducting one of my EMGs). So, I am scheduled for the EMG with Dr. Perry on the 21st of December, and they are trying to get me booked with him in a consult shortly afterwards. Finally, some proactivity. Dr. Giuliani was great, but he is not a specialist in this kind of issue, which is why he is referring me. He was very helpful and very honest.

That's all I really have for now! I hope everyone is doing well and getting geared up for the holidays!!

New Pic, and some things to be thankful for...

I am taking a break from studying and thought I would snap a pic real quick so everyone can see my hair and thinner face! I am freshly showered and completely exhausted, and I think the picture shows that.

I'm very tired today, and not feeling like someone who has kicked cancer's ass. I feel like it's kicked ME, hard. I lost ten pounds in October--while I'm thrilled because I'm working as hard as I can to lose the evil nasty cancer pounds, it does worry me a little because that is about 2.5 pounds a week which is a bit drastic. But, I am eating healthy stuff (putting that expensive education to some sort of practical use!) and walking as much as possible (seeming as to how I can't run or lift weights these days), so I'm not too worried that I'm missing out on nutrition. The thing that bothers me the most is the ridiculous swelling in my legs, the pain in my joints, the FATIUGE, and my hands. While the pain meds are working, this neuropathy thing seems to be accelerating. It's been chilly lately (haha, but warm for MN!) and it seems like when the temp is below 60, my hands get cold fast. Like within minutes. Now what is occurring is when it's chilly (and I'm not talking freezing, just even on a day like today where the temp is in the 50s) my fingers will go numb and so will part of my left foot. Even in gloves and warm socks. This happened several times at work today. When I came home, before hopping in the shower, I ate a few cucumber slices from the fridge with some ranch dressing. My hands were warm when I started. Handling the cucumber slices made my fingers go numb, and turn blue. WTH?????? I hopped in the shower right away and rubbed my hands under the water but it didn't start to subside for about five or six minutes. Blue?? REALLY?!?! My nerves really must be wack!

This is really frustrating...to sit here and not know if I'm going to be able to function in six months. To worry that I am going to be told to wait again. To be frustrated yet again if I am told that yet another doctor, or team of doctors, has no idea what is wrong or how to fix it. Wednesday, I hope to see a medical professional who will listen and help me find some answers.

Well, I hope everyone is doing well this holiday season. I know that the holidays can be difficult for some who have endured financial hardship over the last few years. This economy has not been forgiving to those who were living paycheck-to-paycheck in the first place.

I would just like to take the time to remind everyone that many things of value have nothing to do with money. Next week, during Thanksgiving, take just a moment to think of those things. Sure, having stuff is nice. I can be as materialistic as the next person. How about having an education? Nobody can own your knowledge. How about the relationships of family? Kids look up to us, parents want better for us, siblings/aunts/uncles/cousins enjoy our company (even if they say they don't! lol). Some families have to do without their loved one. Do you love your pets, maybe? That unconditional love they give us--they don't care that we are young/old/fat/skinny/bald/hairy/uncool/popular/rich/poor. The sun rises and sets every day--that's a good thing. What about the beauty in nature? It's everywhere! And let's not forget about your health. I can attest to the fact that without your health, life can get very difficult. For those of you in good health--pay attention to it! Take care of it! Revel in it! Take advantage of it! It's a gift! Don't take your good health for granted, because when it's gone, you WILL miss it.

Sooooo...lovely rant that was. I am coming up on the one year anniversary of the day my life was changed forever. On the 2oth of November, I was clued in that something was wrong. On the 26th, my life, my perspective, my body, my world--all were altered for good.

If your life is good, and you love it, cherish that. If your life is not where you want it to be--CHANGE IT. Only you have the power to do that.

Hanging Out

Just sitting around on a Friday night...no plans, Ted is still in Wisconsin. I thought maybe I could give a teeny update...or something.

I received some new pain meds last week, and they seem to be helping a little more. Think Advil on steroids...

what I was given is called indomethacin and it's typically given to people who have moderate to severe gout or rheumatoid arthritis to control the pain of flare-ups. I'm not quite as stiff and sore in the mornings, my hands don't ache nearly as much, and my knees and ankles aren't quite as painful. I'm still swollen, mostly in my legs, and I still can't wear my rings. Two more weeks and I will get to chat with a new neurologist and see what he has to say.

Yesterday, my friend Britt had to say goodbye to her faithful companion Gabe. Gabe is a Thoroughbred gelding who had been suffering from an autoimmune disorder this past year or so. It had come to the point that the treatment for the disease was just as bad as the disease, and flare-ups were becoming difficult to control. Britt made a decision that was not easy--one that was the final act of selflessness. She put the welfare of her friend before her desire to have him with her. I can respect that decision, and sympathize 100%. Gabe was a strong, sweet, brave, honest, and handsome horse, and he will not soon be forgotten.

Rest in peace, Gabriel--run free and untouched by the plague of illness, released from the prison of a broken body, as beautiful as the sunrise and swift as the desert wind.

Hello all!!

Ho-ly COW!! It's been a ridiculously long time since I have been on here to update. That's a good thing, right? Yes!!

My last appointment with Dr. Datta (my onc) was at the end of September...nothing new to report! I don't see her again until December. The port is staying in for now--I will get to that in a second.

School is...okay. I took on a little too much at the beginning of the semester, but I have worked that out and am now working to get back on track. The good thing is that I am doing well in my classes. The semester is almost half over already...wow!! I've been really glad to get back into the swing of things and be busy.

Ted is still working at Camp Ripley. He is gone all week and is home on the weekends. His orders were extended to next October--yay--which means that he has a dependable job at least until next year!! Braxton-Hancock never called him back, and it sounds like they are still struggling. Ted will be going to Basic Non-Commisioned Officer Course next week--one step closer to becoming an officer in the National Guard. He's so smart, and everyone respects him, and he's getting the "in-charge" positions all the time. I'm very proud.

A spot of uncertain news concerning my health--this issue with my hands (weakness, muscle atrophy, numbness, loss of sensation, etc) and the residual swelling in my legs has come to the forefront of everything. I now have a considerable amount of joint pain and pain in my hands and forearms. My onc did a urinalysis a while back and there was apparently some protein in my urine, so she had me go see my regular physician, Dr. Tallman. Another urinalysis showed that my kidneys were fine and no protein. Any kind of kidney dysfunction would have explained the huge amount of water retention I seem to be experiencing. SOOO...Dr. Tallman thinks that the swelling in my legs and the issues with my hands may possibly be related by some sort of neuropathy (nerve disorder). A few years ago, I was pushing for some answers about whatever it is that is going on with my hands. I saw a few different doctors and was referred to the University neurology clinic. The doc I saw there was NOT proactive in the least--he did a blood test for a disorder called multifocal motor neuropathy--it's an autoimmune disorder where your immune system attacks the motor nerves in your extremities--and did not find the antibodies that would suggest this disorder. He told me that we would "wait six months and see what happens." Well, I was quite frustrated at that point and just figured that no one knew what was going on and that I would have to just push through it, and that it wouldn't get any worse. Well, it's getting much worse. I now have noticeable decrease in muscle mass in both hands and this relentless PAIN. I can barely wash my hair or dress myself, makeup has become an impossibility, brushing my teeth is very difficult, and I'm slow at work at drop things constantly. Dr. Tallman looked back through my chart and it appears that every doctor I saw felt very strongly about mulitfocal motor neuropathy. Had I known that, I would have been a little more proactive about getting a diagnosis two years ago. Now I'm in this situation where this is causing me considerable disabilty and I don't know what to do about it. Dr. Tallman referred me back to the University and urged me to be strongly vocal about finding a diagnosis. I have to know what's going on. I don't want to apply to vet school if two years into the program, I will be physically unable to do the work. If this is permanent and/or progressive, I have some decisions to make. I hate being in limbo like this. I see this neurologist on the 18th of November (soonest they could schedule me). I plan to be VERY vocal about what I want and why--if I can't get answers there, then I will find somewhere else. I'm tired of being in so much PAIN every day, I'm tired of feeling like I can't do anything, and I'm tired of being so exhausted all the time. I want some answers.

So, as far as the port goes, I have opted to leave it in for now. If this IS a multifocal motor neuropathy, the treatment for that is IV immunoglobulins and I figure it will be much easier to do that with a port. I'm tired of being poked. I just want to be fricken NORMAL for once--not have to worry about my health all the time. Sometimes I get absolutely frustrated and wonder why this has to happen to ME. I've worked hard to maintain my health through responsible diet and exercise, stress management, etc...and then there are people who abuse the snot out of their bodies and can run marathons and are perfectly healthy!! Those thoughts soon pass as I think of how much worse off I could be--I have SEEN how much worse I could be--and I become thankful for what I do have. I think of all the wonderful people who are no longer with us who obviously have had things worse than me. My heart aches for their families, and it is (unfortunately) those thoughts that put things into perspective for me.

So, in the coming months, we will see what happens. I am anticipating a muscle/nerve biopsy and tons more blood tests at the very least.

I hope everyone is doing well and getting geared up for the holiday season that is soon to be upon us!