Monday, June 30, 2008

Second Round of Procrit!

I am actually looking forward to it. Last week I was loathing the idea and this week I can't wait to me stabbed by a needle in the belly! I guess I am ready for this burst of energy. It could take up to 4 injections. I hope not.

I am going to MUSC (Medical University of SC) in Charleston the end of the month. I have an appointment with a Rhuematologist and should get an appointment with a Nephrologist too. Tomorrow, I have an appointment with my hometown Nephrologist to discuss how far along my kidney disease is that is caused by Sjogrens. I know I am in stage 4, but does that mean I have a few months or years until dialysis. What are my chances to stop this CKD if my Sjogrens goes into remission?? Say a prayer that I still have hope. Thanks!

Friday, June 27, 2008

A conversation with my ALMOST 4 year old

I was driving my two little munchkins to daycare this morning before I headed to work....

ME: "OHHHH, mommy is too tired to get out of this car and get you guys into school".

Nolan: "Call Daddy. He can get a wheelbarrel and carry you to school".

ME: "hahaha, and how will he do that"?

Nolan: "HE could carry you and push you in the wheelbarrel. That would be great."

ME: "That would be great."

Kids are so funny. He thought it would be cool for me to be in wheelbarrel.

Thursday, June 26, 2008

An Amazing Little Four Letter Word....


It can really change the way you feel. I was depressed earlier this week and now I actually feel like I am becoming my old self again. The procrit injection was not bad at all. The nurse showed my hubs how to do it. We decided the belly was the best place for me. I didn't feel the needle hardly at all, but when she was 1/2 way through the injection I could feel the burning sensation. It felt like I had a fireant bite for about 10 minutes. I don't feel a burst of energy as of yet and I was told it could take up to 4 injections.

My GFR rate is 16. That is a bit scary, but I will do whatever I need to do to keep it from dropping to 15. (15 is when dialysis is a huge possiblity). My creatine is 3.35 My hemoglobin was 9.6. We have an appoinment on July 1st with my nephrologist and hubs officially gives me my first injection of procrit at the office. He had to look away for a few seconds yesterday...he hates needles. :)

I am looking forward to this burst of energy to come. It claims to improve your way of life.

Monday, June 23, 2008

Bitterness and Procrit Injections

Go to my new outlook on Procrit and what it has done for me. Click Here!

I hate the way I am feeling right now....I mean besides the obvious fatigue, gritty dry eyes in the morning, a mouth so dry that it is hard to swallow a biscuit, foggy brain syndrome, muscle tenderness, and the nausea that comes and goes. I feel bitter and angry about my Sjogrens. I want to know why it is also attacking my kidneys. I often ask the classic question...WHY ME?

I often feel guilty that I seem to be bathing in self-pity. Even though I have been diagnosed with SS for almost 4 years and misdiagnosed with Lupus...I think it is starting to sink in that I don't feel good. I work with cancer patients a good bit with my job and I see what they go through. The looks on their faces when they just had chemo can be heartbreaking. Some of them have the best attitudes and they are at peace with their illness. I want that. I want to be the one that everyone says that I have a great attitude towards my stage 4 kidney disease. I want to feel like I can beat this! I don't want to go into dialysis. Everyone constantly reminds me that dialysis isn't a death sentence. Why do I feel like it is? I am only 36 and I have 2 small toddlers that I want to be active with. I don't want them to think their mommy doesn't feel good!

I start Procrit injections tomorrow. I don't know if it will once a week or bi-weekly. My husband is going with me. He'll have to give me the shots. I can't do it! (I couldn't even prick my own finger to check my sugar when I had gestational diabetes). Thank goodness my doctors have got my insurance to pay for the injections. I have a high co-pay of $100.00 for eight injections. My insurance originally said it wasn't covered. I heard that each injection can cost $1400.00-$2000.00 a piece!!!

Saturday, June 21, 2008

Anyone else out there??

I believe this is when it all started....the problems with my kidneys. It was back in 2000. I was actually on vicodin and had a stent running from my kidney to my bladder during my wedding and honeymoon. I had kidney stones and was told my ureters were smaller than normal. I was discharged from the hospital just short of my upcoming wedding...which was less than 48 hours away.

We suffered a miscarrige in 2002 and went through infertility problems in 2003. Fast foward to me having my 1st son born in 2004 and my second son born in 2006. I was diagnosed with Sjogren's Syndrome right after my first son was born in the fall of 2004.

I am writing my thoughts, concerns, triumphs, and set-backs on this blog in hopes to see if anyone else is going through what I am going through. I plan on getting into detail about my diagnosis. Over 4 million people have this autoimmune why do people look at me like I have 4 heads when I tell them that I have this chronic illness?? I have the two most common complaints of this disease. Dry mouth and dry eyes...amongst many other problems. Unfortunately, I also have it affecting my kidneys and I am now in Stage IV Chronic Kidney Disease. Stage V is dialysis.

When I started this blog, I was the ONLY one that mentioned Sjogrens Syndrome in my profile in all of the blogspot world!! I stand here alone and hope someone else would like to join me in educating and winning our battle with this piece of shit disease called SJOGRENS!! Care to join me??