Tuesday, January 27, 2009

Deal Or No Deal...

I am in a crappy mood. I need to vent....

I can deal with the 9 tubes of blood taken every month. I can even deal with the actual discomfort I have been in. I can't deal with it affecting my mood.

I can deal with the double or should I say triple fatigue whammy of anemia, end stage renal disease, and sjogrens. I can deal with the weekly injections of procrit. I can't deal with me not even wanting to read a book to my two little boys.

I can deal with joint stiffness. I can deal with when I walk down a hallway.... everyone else walks twice as fast. I can't deal with me being snappy at my two little boys in the morning because mommy is just exhausted.

I can deal with working a 40 hour work week. I can deal with even working a little extra when needed. I just can't deal with it affecting my mood.

Normally, I think I handle the stress of it well. Yes, there are times I am so tired I spend a good deal just sleeping. I don't need comments like "Get out of the bed", "Do I need to take you to the hospital", or the best one....."Are you dying"?

So hear this people......I THINK I DO PRETTY DAMN GOOD CONSIDERING WHAT DECK OF CARDS I HOLD. YES, I may be in a slump but I am sure my bloodwork I got today will back that up. I am hoping that the numbers will continue to be improving. I know that my anemia is still out of wack and hopefully it will get fixed this month....until then I am going to take that extra breath in the morning and put on my patience hat for my two little beautiful boys.

Wednesday, January 21, 2009

I had a blast this past weekend...

Ok...a break from all the medical blogging! My hubs and I went to Atlanta this past weekend WITHOUT the kids. It was nice. I had won tickets to Celine Dion. I'll admit she is not someone I would ever buy tickets to see, but it was awesome and we loved it! We also saw the King Tut Exhibit. That was cool to see real artifacts from THE TUT himself!

We also ate at one of my favorite restaurants called Maggianos. I LOVE good Italian food. YUM!

Sometimes it is nice to take a break from everything...

Thursday, January 15, 2009


My eyes are not being nice. I finally got my drool back and now my eyes are dry. They hurt and look like I have one heck of a hangover.

Dry eyes are one of the most common symptoms of Sjogren's syndrome. With this symptom, eyes may be red and burn and itch. I feel like I have sand in my eyes. Also, vision may be blurry and bright lights are bothersome.

The Sjogren's foundation has a good write up on dry eyes. Check it out. It is worth the read!

Monday, January 12, 2009

How Vicky Got Her Drool Back...

I had forgotten what it felt like to wake with a damp pillow. I know...GROSS! But...hey...we all do it. (especially during a stuffy nose and cough that won't go away)

One of the most common signs of Sjogrens is a dry mouth. Here is an interesting link to dry mouth and Sjogrens. It also points out the following;

Dry mouth can be a sign of certain diseases or conditions, such as Sjogren's syndrome.

Dry mouth can cause difficulties in tasting, chewing, swallowing, and speaking.

Dry mouth can increase your chance of developing dental decay and other mouth infections.

Dry mouth can be caused by certain drugs or medical treatments.

I would say the second one has been the worse for me at this point. I have to make sure I have a gallon of water to get a biscuit down without choking. The best way I can describe it is when you take a big spoon of peanut butter and try to swallow it. It is hard and almost next to impossible....welcome to my world. Or at least what was my world for quite awhile. I am on cellcept right now and the drool has returned. Gladly I might add.

Cellcept is an autoimmune suppressant drug normally used after a transplant. It is being used for the treatment in autoimmune dieseases at times but as my friend Maria at My Life Works Today points out ...

"One thing I did find is that the FDA is resisting approving it due to the possibility of it triggering a virus (JC) in our bodies that resembles a disease something like MS (progressive multifocal leukoencephalopathy or PML). Here's the link: http://tinyurl.com/4dog5r The incidences of this have been small and I have had no indication of problems. There's a risk with everything and Cellcept has been a lifesaver".

Maria and myself are responding well to cellcept. It is keeping her kidneys and Lupus at bay. It is helping me prepare for transplant and it is how I got my drool back!

Tuesday, January 6, 2009

MUSC Update

MUSC confirmed that the Cellcept is working! I am to stay on it for 2 more months at the same dose of 500 mg. twice a day. They also said that they will be "working up" my live donor heroes. Hopefully, out of the 11 names I gave them, someone will be a match. I think my sister has a good chance. She had to lose a little weight before they considered her and now she almost there.

They want to get everything ready so that maybe....just maybe...I'll have a new kidney by summer! My creatine went from 3.1 to 3.5 this last month too. I was holding steady at 3.1 for over 6 months.

Sometimes I wonder if I am getting this transplant too soon. Last summer they gave me 2 years before I would be on dialysis. (although they said they were just guessing from how fast my numbers were going down) THe chances of a better outcome is not being on dialysis at all before transplant. Dialysis takes a lot out of people.

My main objective is too push dialysis out of the picture....I don't want anything to do with it. It scares the hell out of me. I know that the chances of it being in my future down the road will probably be inevitable. I hold on to that small thread of hope that when I get my new kidney it will work for at least 15-20 years. Maybe by then they can grow a kidney for me??? Medical technology is growing by leaps and bounds.

At least my organ that needs replacing can live off of a machine for a few years. I am in much better shape than others needing a heart, lung, or liver. I pray for these people.

Monday, January 5, 2009

What a way to bring in the New Year....

If you want a peek at what Hubs, my 2 boys, and I did New Year's Eve... sneak over to 2lilpumpkins .

I woke up to Braydon (my youngest) being sick New Year's Day. That child won't take anything for medicine. I had to force 1 tsp. of children's motrin down his mouth to bring his fever down...I was praying he wouldn't gag and throw it up on me. I decided I would cuddle him that day and stay in my PJ's too. We watched my Clemson Tigers lose to Nebraska in the Gator Bowl. *SIGH* At least my parents were in Jacksonville having fun...or so I thought.

I get a call at work on Friday from my mom saying that she and dad made it back, but she thought she got food poisoning and was going to bed. My hubs calls and says that my dad is taking my mom to the ER. At least Braydon was feeling better and wreaking havoc on my husband.

They admitted mom into the hospital with pneumonia and blood in her stools Friday night. Apparently she had a double whammy of Gastritis and pneumonia. She got to go home yesterday and is resting.

Oh...and my grandma has pneumonia too, but is home resting as well.

The funny thing is that I was the one that was checked twice a week for pneumonia while being sick the past month. I just have a nagging cough that has decided to take up a permanant residency with me.

Don't feel bad for me....I am sitting here with a bowl of chocolate ice cream dipping choclate cookies in it! LOL PLUS...I get another procrit injection tonight.

YES....I am taking a small "cheat" from the renal diet...I need it!