Thursday, March 26, 2009

Contemplating egg donation.

I got the results of my MRI. As i suspected they were not good. The radiologist used the term progressing three times and considering it has only been 5 months since my last MRI it is a little scary and I am a little freaked out.

Started Baclofen to help with the back problems. So far no luck it works for about 20 minutes then wears off. Did I mention my body hates me??

I emailed the head of MS studies at Johns' Hopkins today, something I have been putting off for some reason and today I discovered that reason. I was waiting for more time to pass to see which direction the disease would take with the treatments we had tried. I sent him what seemed like my entire life story and begged him for help. I am waiting to hear back from him.

I am also waiting for my neurologist to come back from vacation. And I am waiting on the repair man to come fix my sink and my light in the kitchen. Seems my entire life has become one big game of waiting lately. I am not a patient person, waiting makes me over analyze any and everything.

Back to my title, while I was on the JH webpage I managed to find the page to sign up to be an egg donor. I am wondering if I can donate eggs for research, or if they would even want my eggs seeing as I have the whole MS monster attacking me right now. But, how great would it be if I could donate my eggs for something useful that could potentially save lives as opposed to sitting here mourning the fact that I am not going to have any more children? I made this decision a while ago, that if I am able to do it, i will. Even if it doesn't help me, if it can help someone else it seems worth it.

Wednesday, March 25, 2009

Baaa Baaaa balck sheep and Good bye NT I will miss you.

So I have pretty much been banned from NT. Which sucks and was the one place I actually found some sort of balance. Unfortunately there is a certain moderator who has it out for me, and no it's not all in my head.

I even posted a goodbye to everyone telling them they can find me on myspace or yahoo and that message was also yanked by said moderator. Apparently I am not allowed to say that the reason I am leaving is because I am tired of having my hand slapped every time I post something. It seems I am too offensive for the MS community.

So for those of you still allowed to post on NT, if you could please pass the word I am still around on yahoo. Legzzalot there too. Same name on myspace.

Saturday, March 21, 2009

Today's temporary moment of insanity brought to you by The T Cell Mafia

Spent two days getting new MRIs. Resulting in massive bruises and more blown veins. You know, it's kind of funny. When I was in High School I really got into body piercings. I had 3 holes in each ear, an eye brow ring, a nose ring, cartlidge pierced on one ear, a belly button ring and even the little skin between your thumb and forefinger. Of course I had the platinum blonde spikey hair and neon pink bangs with cotton candy pink highlights throughout to go with all my metal. When I turned 18, I got a tattoo. Yup, I thought I was a real badass!

Now I give myself daily injections and every time I so much as look at a nurse I blow a vein somewhere. Nowadays if I want to rebel and be hardcore I leave my house without my giant bag of prescriptions. Driving to the grocery store is now an adventure and the highlight of the week. I find myself agreeing with the republicans and wanted to hold teenage boys down and cut their hair, and buy them pants that fit!

Last night was a fun adventure. My back started killing me. And by killing me I mean I can feel my spinal cord rubbing against my spine. So I decided to bite the bullet and take the percocet. Which I hate doing, I have always hated drugs and up until being diagnosed we didn't so much as own a bottle of asprin. But last night I simply couldn't take anymore pain. Percocet is a brilliant idea in theory.... unless in a pain riddled half blind from the Optic Neuritis moment of insanity you take a water pill instead.

I realized this mistake about an hour later as i got up to pee for the 5th time. It is now 3:00 in the afternoon and I am still awake. I think the water pill finally wore off. I moved my laptop upstairs to my bed and have been trying desperately to fall asleep since 11:00 this morning.

2 percocets and 4 ibuprofins later... my stomach is doing somersaults and I am having more hot flashes than a 50 yr old woman.... And my back is still spasming. I get my MRI pics monday. Doctor has decided we are going to try the IVIG since the steroids only managed to make me sick and aggravate the symptoms I was having.

Oh yeah I am adding pics from the two IVs they did for the MRI. So you can imagine the thrill I am experiencing at the idea of anoter 5 days of IVs every month.

Wednesday, March 18, 2009

I'm alive! That is the good news....I think.

Hi everyone! I know I am MIA again. I promise I am not ignoring everyone. I did my 5 days of IVSM and I have been tying to recover ever since.

The good news is this round wasn't as bad as the last one. Doing it at home was a lot easier, but I did have some issues that will probably prevent me from doing it at home again. The bad news is, all of my symptoms are worse. I have been in my house for a week and today was the first time I was home without a babysitter.

This one unfortunately is going to be short I am trying to type with one eye closed and squinting out of the other. My right eye decided to go kuput since it's been over compensating for the left one since Dec. Balance is actually worse, but I was able to high five my best friend the other night in celebration of the fact I have not fallen down the stairs in over a week.

I even got to deal with my old company for two days while I was in the midst of steroid rages. I paid my Cobra payment and THEY didn't pay the insurance premiums. (I am not surprised) They have a habit of not paying their bills, I am so glad I don't work there anymore. Took me threatening a lawsuit and about 30 phone calls to get all of that settled.

Tomorrow I have the back to back MRI scheduled for the spine pictures and then I get to go back Friday for the brain. Now seeing as I cannot see clearly or feel the pedals to drive, I get to rely on my mother again, which makes me feel a little pathetic, but I am glad she is here.

Ok, I am going to go get some sleep...Well you know what I mean, I'm gonna go drug myself with enough muscle relaxers to tranquilze a horse and hope it stops the spasming long enough for me to get the 3 hours of sleep I need to prevent me from becoming dillusional.

Thursday, March 12, 2009

IVSM Survival Kit!

I am starting another 5 days of IVSM today. Which reminded me to go to the store before the nurse gets here and pick up all of the things I remember needing from the last time I did this. And then I thought I should share this for anyone who is about to go on IVSM. These are things my doctor didn't tell me I needed.

1. Gatorade! Lots and lots of gatorade!You will need all of the electrolytes you can get.

2. Hershey's chocolate bars!Big ones! Why? Because the IVSM causes your blood sugar to go haywire and they best solution is a little bit of chocolate to help regulate it.

3. Cranberry juice. The last time I was on IVSM I ended up on water pills because I was retaining fluid so bad. i gained 7 lbs in 3 days! You need to be able to pee to flush some of this out.

4. Mints. IVSM leaves a horrible taste in your mouth. The mints help you to make it thru the infusion without being nauseated.

5. True Lime water flavoring packets. These are very strong and normally don't taste very good. If you are not hydrated it increases your chances of blowing a vein. My last 5 day round resulted in 6 blown veins. I couldn't drink water because of the taste from the IVSM. The true lime is very strong and helped to override that taste so that I could drink water.

6. Excedrin. Migraines normally hit me when my blood sugar starts spiking and falling. Excedrin helps.

7. Make sure all of your prescriptions are refilled. You are not going to want to leave your house to go get medications if you run out.

8. Movies. I rented a bunch of movies this morning because I know I am going to be home alone and not feeling like moving.

9. Fruit, Veggie, and Cheese trays. I buy the little ones. It helps to be able to eat a little bit every few hours. These are very filling, they help settle your stomach and regulate your blood sugar. they are also a lot more nutritious than popcorn or candy while you are zoned out watching movies.

I am sure there are more things to add to the list, but these are the ones I remembered today. And if anyone else has any suggestions please feel free to comment. Input is always welcome.

Wednesday, March 11, 2009

Met my new neuro today.

And I get to look forward to 5 days if IVSM again! BLAH! And I am scheduled for next
Thursday for spinal MRI and I get to go back Friday for another brain MRI. She wants to see how many new lesions are there and/or if the existing ones are growing. She did use the p word today. Fortunately she's not ready to sign that death warrant just yet.

She did agree that my last doctor was a moron for giving my the medrol dose pack and hoping it fixed the Optic Neuritis, and for not doing anything else when two tries with it didn't work. Or, as she put it "like putting a band aid over a bullet wound" I am seeing 60/80 out of my left eye....with my contacts in! That's a little freaky. I can see perfectly out of my right eye.

The good news is, I should be able to do the IVSM at home this time instead of having to drive to the hospital every day, go thru registration, and go to another building for IV therapy where they still managed to blow up all my veins.

The new doc seems pretty cool, even if she is a lot younger than expected. I don't know why I have a prejudice against young doctors, I guess I see them as inexperienced. But on the plus side she is not too far out of med school so hopefully she is a little more up to date than Dr. Idunnohaveanotherpainpill.

Oh and the weird electric current going down my spine when i bend my head is not me going crazy it is apparently a rather ordinary symptom in most MS patients. See I'm not as crazy as I look.

We are taking bets on the MRI results. So far the pot is up to $50. I am betting there are 5 new lesions. Some bet more, some bet less (they obviously have no idea how this disease works) and one person is betting no change. Let's see who's right.

Tuesday, March 10, 2009

Let's talk about SEX and MS.

Why you dare ask would I approach this horrifying topic? Because it is 4:30 in the morning, I am wide awake and once again this disease has found a way to make me miserable.

Somewhere along the trip from Virginia to the far reaches of Kentucky my legs decided being numb wasn't enough and they needed some company. Now my butt, both hips, two fingers on my right hand and my nether regions have joined the numbness wagon.

You have to love the irony here. I sell sex toys for a living..... it's kind of like an impotent man selling's downright disturbing!

One lesson I learned over the years in past relationships was that as a woman we have the ability to do many things. We can create life, we can have multiple orgasms, we can bleed for 7 days and not die, and we can even fake orgasms. The latter is a very bad trait we inherit as women. I have learned the hard way why women should not do this. Think about it. Men are simple creatures. They need direction. If you are faking an orgasm when he is obviously not pleasing you he will interpret this as a job well done and he will continue the unhappy maneuvers.

My fiance and I are very open to one another, and very honest with each other. Therefore, I choose not to fake orgasms with him. If something he is doing is not working, I find it best to let him know so that we can do something else.

Now here is the problem. I have NO feeling in that area right now. This happened once before. We tried, it didn't work. We stopped. In fact, I think this was one of the few times he has seen me cry. Yes, I cried. It's a horrible feeling when you lose your feeling.

I know I am not the only one who has gone through this so I thought it was time to share this story. Ok, so being the moral young lady I am I will tell you the moral of this story: Faking orgasms is bad, numbness in your nether regions is worse.

Monday, March 2, 2009

Never thought I would be asking for the IV steroids again!!

You know back around Thanksgiving when I was at my mom's house trying to sweat through the withdrawals from the last round I remember making a solemn vow no matter how bad it gets I am never doing IVSM again! NEVER EVER EVER AGAIN!!

You can say my last round didn't go so well. At the end of day one I woke up at 3 AM feeling like superman my powers were restored! I could feel my feet, I could feel my nether regions, life was good.

Day two unfortunately was not so thrilling. I still had the horrible taste in my mouth that one gets with solumedrol. But I arrived optimistic. After the nurse blew another 2 veins trying to insert the IV we finally got it rolling. The motion sickness kicked in as we were leaving the hospital. Then the migraine hit when we got home and I found myself unwilling to budge from my somewhat comfortable position on the sofa.

Day three was what I considered the tie breaker. Round one was a victory round two I lost to a drug. Day three I had my butt handed to me on a silver platter with the word "LOSER" engraved in the middle. By this point I was sick as a dog and getting worse by the hour. I also managed to gain seven pounds in 3 days which I believe was all fluid and it was all collecting in my face.

Day four almost didn't happen. I refused to go get more. I stomped my feet and whined and screamed until my neuro finally agreed to see me before I went in for more. He takes on look at me, and prescribes sleeping pills and water pills to make me pee before sending me on my merry little way to go get another IV. Another blown vein...this makes 5 in 4 days. What can I say, my body doesn't like needles. I came home and took both the sleeping pills and the water pill. An hour later as i am in zombie mode on the couch I realize this was a bad idea. I am exhausted I want to sleep but now I have to pee every five minutes. I swear to you I would go to the bathroom and by the time I made it back into the living room, I had to go again. This was also the night I wanted to kill my fiance for bringing home the wrong kind of chicken. It was a huge fight. Looking back I may have over reacted just a tad.

Day five was the absolute worse. Day five was also moving day. You see five days after being diagnosed and the day before my birthday we found out we were moving. Seems the landlord was collecting money but not paying his mortgage and he was foreclosed on. Instead of telling us this was happening he continued to fill our heads with silly notions that we would be able to buy the house once our lease was up. And we had continued to make repair after repair. The call from the bank letting us know we had less than 3 weeks to move was a little disturbing. Now mind you my spinal cord is swollen and I am under strict orders not to lift anything over 20 lbs. The really fun part to this was that we could not get into the new place until the Monday after Thanksgiving, which meant putting everything in storage and heading to my mom's for five days. All of which my poor fiance did by himself while I laid there helpless and miserable. This also meant I had to drive my car 50 miles to get it to moms house. It was the longest trip I have ever been on. And at the time I was making that commute every day. My mom lived less than two miles from where I worked.

Two days later after all was said and done and I had a total of 6 blown veins and the meds finally started to work their way out of my body I was feeling a little better. My back started spasming that night and I thought it was because I was attempting to sleep in a water bed. But every time I would lay down my back would got berserk. I finally managed to fall asleep only to wake up soaking wet. At first I thought the bed had busted. Then I realized it was sweat. Enough to make my clothes completely soaked. I get up, jump in the shower and change my clothes and my bed stuff. In the five minutes it took to change the bedding out I was soaked again.And now I am shaking. So I call the neuro... who tells me it's withdrawals and I need to sweat it out. Three days later I was somewhat back to normal.

So now you understand how desperate I am to fix this crap. I am about to go in and ask to go through this again, because I cannot find any other options. Which means sending my daughter away again until it is all over. This is not a side of me that I want her to see. Plus this time I think I am going to let them leave the IV in, even though that didn't work the last time. We will see.

Oh by the way, yes I added music. I needed to find a way to entertain myself...and others. Of course you can always go over to the player and hit pause if you don't want to hear it. I know I know it's all girly. Just didn't think the Rob Zombie fit into the page theme.

Sunday, March 1, 2009

It's March!!

It's snowing!

Spring cleaning time will soon be approaching and along with the housework comes time for some soul cleansing. I thought I would take the opportunity to share a few insights about MS. Things that I have learned and things I should be grateful for.

I have learned that my body will do what it wants to no matter how much I fight it. I am grateful that I have a supportive family to help me.

I have learned that our next house will be one story. I am tired of falling down the stairs! I am grateful to still feel the pain of my a$$ hitting the stairs because it means I still have feeling there.

I have learned that worrying over what may happen next week only makes you sick this week. I am grateful that I worry, it means I still have something to lose.

I have learned that one side effect of this disease the doctors don't warn you about is what I call The Murphey's Law Effect- anything that can go wrong will go wrong and there is no foolproof plan. I am grateful that I was raised to be a smartass because I can find humor in the midst of the chaos.

I have learned that I should not tell my mother when things begin to fail on my body as she feels the need to call me every 30 minutes to ask how I am feeling. I am grateful my mother is still around to pester me every day all day.

I have learned what Optic Neuritis is. I really can't think of much to be grateful on with that one other than it is only in one eye for now.

I have learned that sex is impossible when your nether regions are numb. I am grateful the first round of steroids fixed that problem.

I have learned that electric shocks going down your spine when you bend your head doesn't hurt. I am grateful for the patches of numbness it makes the daily shots of copaxone a lot more tolerable.

I have learned not to take life too seriously, you will never make it out alive. I am grateful to still be here to watch my daughter grow.