Tuesday, December 30, 2008

Another Update on Sjogrens and Kidney Lab Work

First, I believe the cellcept is bringing my sjogren titers down. I will hear back from MUSC next week on my course of action. I think they will want to increase my dosage. My ANA titer went from 1:1280 to 1:320 ....Pretty good! My Rhuematoid factor was over 2200 and now it stands at 225.8. SSA is 709 SSB is 874. I am not sure what these were previously. Everything is still high, but better!

Now....my hemoglobin is down to 10.0 and my hemacrit is 29.8. LOW!! So my procrit injections are back to once a week. I am dragging my butt from lack of energy. This is why I hav not posted as much lately. I know I will feel better in 2 or so weeks. They are checking my iron levels in 4 weeks too...I may also have to supplement the procrit injections with iron.

Tuesday, December 23, 2008

Merry Christmas!

Just want to write a quick note. I had blood work drawn today and should know my numbers by next week. I have an appointment the 29th. I am laying low and trying to save up some energy for the holidays.(I am going on three weeks with this awful cold and cough) I'll post next week about what I find out at the appointment. Until then....

Have a Blessed Christmas!

Wednesday, December 17, 2008

Hair Today...Gone Tomorrow!

Kelly and Vicky at our Annual Teddy Bear Clinic

My friend Kelly on the left has decided to come up with her own fundraiser for me...

It is one that I honestly tried to talk her out of...

BUT she has decided since she can't give me a kidney because of medical reasons...

She will give me her hair!!

That is right. If she raises at least $2000 from our co-workers, she will shave her hair off!

Actually she will cut it first and donate her hair to Locks of Love and then shave the rest of it off for me.

What a giving, caring, selfless friend I have. I am proud to be her friend!

Monday, December 15, 2008

May I borrow your voice??

I have no voice...Laryngitis. Is that how you spell it? This cold has kicked my butt. I feel a little better today.

I received my "congratulations" letter from MUSC stating that I am on the transplant list. One more thing to check off my list. I think the cellcept is working. I get blood work on the 22nd to check my levels. I have still been tired, but I think it is because of the holidays. It is a different kind of tired when it is Sjogrens and I have noticed the past week that I am not aching. I have not had to take any pain pills since last Tuesday. This is why I think the cellcept is starting to work and bring my ANA titer down. My procrit Injection is tomorrow too, so that will boost me up for a few days!

Monday, December 8, 2008

My Head Feels Like It Has Helium In It!

I think I have a cold.... and it stinks....I went to be looked at because of the Cellcept I am on. I have to watch for fever, chest congestion, wheezing, or BIG sinus problems.

Sorry, I don't feel like blogging much today. I am tired.

I'll stop with the pity party now...

Good News...my sister's fundraiser at SAIC raised over $1400.00 for medical expenses not covered by insurance for me. I am VERY grateful for all the kind and generous people that helped put this together. It makes me cry...and the way my head feels right now....I don't want to do that!

Take Care!

Thursday, December 4, 2008

I am in tears of thankfulness...

I was going to wait to blog about this, but it can't wait. SAIC in Tennessee (where my sister Crystal works) is doing a silent bake auction for me today in their lobby of their building. First of all....35 people signed up for this to donate and/or volunteer their time to bake for this.

This fundraiser will go to medical expenses not covered by my insurances. Originally, I was more scared about the financials of my transplant vs. actually having a transplant. My family and friends have told me not to worry about the financials.....we will find a way.

I plan on doing a large post on this with more pictures. I have that lump in my throat you get when you see someone doing good for someone else. My eyes are fighting back the tears.

Thank you SAIC.

Sites that help me... & update

I thought I would mention a few of my favorite blogs or websites I like to frequent. All of them on my sidebar are great, but these are my favorites!

Julia at Reasonably Well has a great blog about living with Sjogrens Syndrome. She combines her knowledge with wit and humor. What I like particularly about her style is that what I "try" to write...she does it with ease.

Also Sjogrens World is a great tool for asking any question related to Sjogrens or other autoimmune diseases. It has helped me tremendously and there is always a friendly person there to pick you up when you need it.

Now for the renal problems I enjoy Pam's blog Waiting for Transplant . She had a kidney transplant earlier this year and has loads of good info that is compassionate.

I also like The Adventures of Stacy without an "E" , but I must warn you he is not all lollipops and puppy dog tails. He combines a witty sarcastic view of being on a kidney transplant list while going through dialysis. He writes what he feels...the good and the bad.

~~~Now as far as an update~~~

I received letters from my primary and secondary insurance that I am pre-approved for kidney transplant. They deem it medically necessary. It may not sound like a lot, but that is one less thing to worry about.

I am on week 2 of Cellcept. I haven't had any serious side effects with the low dosage I am on. The tricky part is to take it with an empty stomach. I do think at times my stomach turns for a couple minutes after taking it, but other than that I can't complain.

And can I say once again....THANK YOU GOD and the creators of procrit. I had my injection this past Tuesday and I do feel less fatigued. I take it every 2 weeks now....but I may go back to once a week after the next set of blood work. I think I need it once a week again.

Monday, December 1, 2008

I am T-I-R-E-D!

Yes, I am dragging butt right now. I am not sure if I should blame the Sjogrens or the End Stage Renal Disease. I do know that I can partially blame the holidays.

My Mom, Dad, and Sister did most of the cooking Thanksgiving. I did do a yummy pineapple casserole....and I helped with the clean up too.

I had to work a LONG day Friday at work. My mom and sister brought me lunch. :) I then met my hubs and boys over at my parents house to put up the Christmas Tree and eat left overs.

Saturday, I stayed in my PJ's most of the day. I decided to not meet my family for breakfast or shopping. I decided to listen to the Clemson game on the radio instead of watching it on TV. (GO TIGERS) I did get up and went to my parents house again and had yummy pizza! My sister and I played with this card maker thing for a couple of hours. We designed a "thank you" card for her co-workers at SAIC. They are doing a bake sell in my honor to help raise money for medical expenses not covered by insurance.

Sunday started off slow. I made about 120 lime green ribbons for organ donor awareness. Then hubs and I took the boys to see Disney on Ice. I was just as excited as them. We had a blast!

And now.....I am TIRED! I need to rest up for this coming week...

Thursday...taking the boys to see Santa
Friday...picking out our Christmas Tree
Saturday...Dropping the kids off at Poppy and Grandma's house to spend the night. Hubs and I have Christmas party to go to and Christmas shopping to start
Sunday...Picking up kids and decorating our Christmas Tree

And Hubs needs to put up our outdoor decorations this week too! :)

I am tired, but I refuse to let Sjogrens and ESRD take my fun out of the holidays!