It has been a busy couple weeks! We went to Disney and had so much fun. I need a vacation from vacation. Lol I behaved pretty well healthwise. Vasculitis tried to show out though. I have so much to write about. Now that my little monsters started school this morning....I will have more time. I still need to fill you in on my potential donor Jay, my trip to MUSC last weekend, and the next steps for kidney transplant. I have a doctor appointment with my rhuemy tomorrow too! Blog post coming later in the week.

chronic illness post

Awesome read with those of us with a chronic illness. Just got back from vacation from Disney! Had a blast making memories with my family. As soon as I get back on my feet, I will post on here. http://blogs.webmd.com/chronic-conditions/2012/08/10-things-lupus-has-give-me.html

LOVE THIS!

True. Story.

Sjogren's Syndrome and Kidney Involvement

I have end stage renal failure ultimately caused by Sjogrens. Apparently it has been going on for quite a bit, but it was being sneaky. In fact, I am sure it was going on before I even knew I had an autoimmune disease. Darn sneaky systemic disease. Bad Sjogrens!!

I am not on dialysis as of now.....I was suppose to be nearly 2 years ago. I truly believe prayer has played a big part of that. My kidneys hang on to functioning at 15%-18%. I have renal tubular acidosis (RTA) which causes metabolic acidosis. The way I have explained it to my two little pumpkins is like this.... A filter for a pool is necessary to clean all the yucky stuff out of it yo make the water clear, clean, and refreshing. Occasionally chemicals are added to the pool when the water gets cloudy including good ole baking soda. Our kidneys are our filter to make our blood clear, clean, and refreshing just like the pool's filter. Also just like the pool's filter we need to add sodium bicarb (good ole baking soda) to our body to help the kidneys. It helps with the acid, ph balance, and electrolytes. Of course as kidney disease progresses other medicine may need to be added.

Now if you have renal disease these electrolytes are tested. Mine are tested 2 x a month because if your electrolytes are screwy......then you are screwy! :-) My last hospital visit in March was because of my potassium being at a critical low. My sodium bicarb was extremely low. Calcium was a little low. Phosp

hate was high and the only thing normal was my magnesium. I was more lethargic than normally. I felt like I was going to hit the floor and never wake up. It was honestly a horrible feeling. I remember working and calling my nephrologist telling him something wasn't right. (Listen to your body) I stayed and worked because that was what I did. (Push myself to absurd physical levels) The following morning I called again and told them something was definitely wrong. After STAT bloodwork, they told me to go the emergency room. Long story short....it took 9 bags of potassium in my IV to get my level normal. That is like enough for an elephant! Now....my levels are low, but not critical. We maintain them through 120 Mg. Of potassium citrate. Also enough for an elephant. The good news the past 2-3 years there is more information out there about Sjogrens and renal involvement. Also the other organs it can effect. As I said I am waiting for a kidney transplant. I cannot wait to share my news about my possible donor and the latest update on that news.

Sjogrens......good gravy, I am doomed!

I do believe some of us have thought this a time or two or three or....you get the picture. There is no cure. Yes, we have been brought up a few times on the television show House. When the doctors on that show have no clue, they start listing the autoimmune diseases. Ha! A whole show was based on Sjogrens Syndrome. Our little elite disease has even been on Mysterious Diagnosis. Are we doomed? No way. Nope. Nah. Never. Do we make adjustments to our lives? Sometimes a little, sometimes a lot. It is part of who we are, but it does not define who we are. I think back to some of the adjustments I had to make. Popping pills was a huge one. I still do not like to take them. Saving my energy when needed....although at times that doesn't work! Lol ahhhhhh the trips to visit the vampires. I think I get doubled whammy on that because of my kidney failure ultimately caused by Sjogrens. However, the good side to each of those adjustments are; The medicine controls some of my symptoms some of the time. Ahhhhhhhh.....naps give me time to myself. I am no longer hyperventilating before blood work. It is easy as can be. What were some adjustments to life when living with Sjogrens or any other disease you may have?

Vasculitis....My Nemesis!

Cutaneous leukocystoclastic angiitis......to be exact. I like to call it an easier name, hypersensitivity vasculitis. It is the most common form of vasculitis and affects the small vessels of the body. For example.... capillaries. It is the imflamation of blood vessels. Mine likes to come out on my legs and occasionally the trunk of my body. Admittingly, my vasculitis doesn't seem to look as horrible as some I have seen. I don't get open sores or ulcers, I get small pin-like purple dots called purpura. Thankfully, as fast as I break out within a few days it is gone. I have noticed a little discoloration of my skin on my calves, but I feel comfortable showing my legs and my faded 16 inch scar on my left calf. :-) my battle wound from nearly three years ago. (Definitely another post) Now, why is it my nemesis? This stupid, pain in the you know what, fickled piece of poo likes to just show up at the most inopportune times!!! If it's too hot outside and I am in it for just a bit...it comes out. If I am subjected to the cold.....it comes out. If I get emotionally stressed.....it comes out. If I get excited.....it comes out. If I am very active one day.....it comes out. I take a low dose of the devil called prednisone. I even take a small dose of cellcept. You would think between the 2 I should be in remission with this poo! Nope, I have a chronic case of this poo! It does keep the flares to a couple times a month, instead of a couple times a week though. :-) I could go into what it stops me from doing at times, how it feels, and all the negative poo about this poo called vasculitis, but I won't. I now beat this culprit by coping with it. Here is a link to good information on all the different types of vasculitis. A lot of good people too. vasculitis foundation

Hamster Wheel of Life.....

I have felt like a Hamster. Puffy cheeks and all, thanks to prednisone. I have jumped on that wheel quite a few times. Running from my health. Running from symptoms. Running as fast as I could. Guess what? This gal is tired and I realized I wasn't running anywhere. I was going nowhere. The good news is my faith is restored. My relationship with Jesus is strong. I may of been running nowhere, but I was not alone. So what have I been doing the past few years? I was working until this past March. This last hospital visit in March just confirmed what I already knew. I was tired. I mean truly exhausted. My health had been sliding downhill the past year. It wasn't a sudden change and all I knew while sitting in tears in that hospital bed....I needed to take care of me. I had to take care of myself before anyone else could. I was tired of smiling through the physical pain. I was tired of not being a Mommy to my two little boys. I was tired of not being a wife. My life consisted of working, coming home to bed, and on the weekends I had a couple hours of energy here and there. Now, I am able to rest when needed. I am able to be a mom and a wife again. I still have bad days, but they are much easier to deal with. I can take care of my self. I will save other blog posts about what specific health problems I have been dealing with.....don't want to tell ya all my happenings at once! Lol

So....Yes! I have jumped off that wheel of going nowhere. I am in the process of going from inactive to active on the kidney transplant list. It is taking FOREVER! lol but that is also another post. It feels good to be back.