Countdown to MUSC...

I will be traveling tomorrow to MUSC with hopes of good news in the treatment of my CKD related to Sjogrens. My kidneys are operating at 16% right now. They may not have any news for me, but at least I will know where I definitely stand. I will keep you all posted when I return. It probably will not be until Monday, August 4th. My Birthday!

I had another round of procrit last night. Funny thing is....I think by Monday I feel my energy level go down a bit....it's probably in my head or maybe just Monday's in general! I do love the energy it provides for me. We may switch to Arnasep. I have heard that you only need to take that once a month. It is the newer of the 2 drugs. I also have a question about my pain relief drug called Ultram......I love the stuff, but when Hubs and I looked at it's warning online it claimed to not use if you have severe kidney impairment. SO....I haven't taken but 3 pills the past 5 weeks and that was when I felt so bad I could barely move.

Talk to you soon!

***Update***

Ohhhhh I hate dealing with insurance and billing/coding specialists!! I was called a couple of hours ago by a lady in the MUSC nephrology dept. and she said that I was NOT able to have my appointment because I wasn't referred by a primary physician???? I told her my nephrologist referred me. She got a little snappy. You currently don't have a primary physician? (NO LADY! I SEE SO MANY SPECIALISTS AND ALL OF THEM ARE INTERNAL MEDICINE DOCTORS.....I WORK FOR A HOSPITAL THAT GIVES FREE MEDICAL VISITS AND WRITES PRESCRIPTIONS FOR URGENT-LIKE CARE VISITS TO THEIR EMPLOYEES....WHO CAN AFFORD MORE DOCTOR BILLS???)She said that I needed to call my insurance company and get it pre-authorized. (meaning that my insurance will pay) I call my insurance company and they said under "special circumstances" a nephrologist can refer another nephrologist. I had to get my nephrologist to call and get it pre-authorized. I am waiting on a phone call. I think the girls at my regular nephrologist office can make all this happen. They are GREAT! They really help me out and was very understanding when I started my procrit injections. If they can't.....I think we'll just bite the bullet and pay for the visit out of pocket.

Everything is a go for tomorrow now. The girls at my office said that they called my insurance company and NO precert was needed. They called MUSC too. Everything is straightened out....I hope it stays that way tomorrow! :)

I could use Mary Poppins right about now

I wish she was real. I grew up thinking she was. Every time I cleaned my room as a youngster I thought and said out loud "I wish Mary Poppins was here." The funny thing is that I still say that as an adult and I really could use her most weekends. I need her magical ability to sing and clap to tidy things up. Instead of toy soldiers jumping into their toy box...I would have dishes dance their way to the dishwasher and pots would love to scrub themselves. The vacuum would run on it's own while whistling and ALL the laundry would bathe itself while cheerfully blowing bubbles to keep my little toddlers amused.....ahhhhh....that would be nice!

You see...I could have used her "spoonful of sugar" last night and not just on me! LOL My 2 year old got sick and I was up late last night. (he woke up this morning with a smile on his face....feeling much better) I guess mommy's "spoonful of love" worked just fine.

I must go now. I have a sink full of dishes and a couple pots to scrub. I have laundry that is never ending and as far as the vacuuming.....that may have to wait! It depends on how I am feeling. We all know that we need to pace ourselves and not over do it because we will dearly pay for it the next day or so. Ahhhhh....the joy of Sjogrens! Do you think Mary Poppins has a cure for this?

This post was inspired by Julia at Reasonably Well. A great blog on Sjogrens and everyday struggles that we all can relate too!

Professional Patient & My Brain Fog This Morning!

First, I would like to thank Val at Professional Patient for mentioning my blog to others. I am hoping I can give hope or at least let others know that they are NOT alone. The Professional Patient is a...

"Guide to managing illness and insurance in the USA. Tips for dealing with doctors, working with your insurance, saving money on meds, coping with chronic illness, etc. From a 30-something Marfan Syndrome and Sjogren's Syndrome patient."

It is a great resource and one that you want to put in your favorites!

And now to my Brain Fog issue.....

I was getting myself ready for work and my kids ready for daycare this morning. As usual time was getting away. Nothing out of the ordinary with 2 toddlers. ;) We ran out the door and started down the road. Half way to the daycare....I realized that my boys did not have breakfast this morning!!!!! OMG! How could I have forgot something like that??? Needless to say Chick-fil-a was a lifesaver this morning! *sigh* The boys love their fresh friut and small hashbrown rounds with milk. LOL

Fresh Clean Sheets & A New Quilt!

There is something about fresh clean sheets and a new quilt that makes me smile and feel good! I got this quilt a couple weeks ago while visiting my sister up in Tennessee. It was a present to myself. My mom and sister bought me 2 pillow shams and 2 throw pillows to complete my set as an early birthday present.

Do you ever think about the little things that make us happy in our everyday lives?

Driving through town and hitting all the lights on green....
The sound of your children laughing....
The smell of fresh flowers....
A nice thunderstorm on a lazy summer day....
A pina colada or strawberry daiquiri....
Hearing a song over the radio that brings back a good memory from long ago....
AND....
Fresh clean sheets and a new quilt!!!!

On another note...hubs did another injection of procrit yesterday...this makes my fifth. WHAT A DIFFERENCE! I can't say I am ready to do cartwheels, but I definitely can get up in the morning and feel as though I actually slept. I still love to get naps on the weekends and at times I need to go to bed early. Anyone who is afraid to get procrit injections due to chronic kidney disease because of Sjogrens....it is soooooooooooo worth it! The needles do not hurt at all...I PROMISE! The medicine does sting a bit....but let it sit out at room tempature for about 30-45 minutes. That really helps. MUSC is next week and I can't wait to share my experiences with all of you and see what they think needs to be done. Of course the major thing is the affect Sjogrens is having on my kidneys....but all those other lovely symptoms of Sjogrens will be addressed too.

Speaking of sharing experiences.... look at my other blog 2 Lil Pumpkins...you will see my 2 most favorite little men eating watermelon! It will make you smile!

WoooHOOOOO!

My hemoglobin is up to 10.5...Hemacrit is 31.1. I still have to take a weekly shot of Procrit....we will see after next month's bloodwork if I can go bi-weekly. :) I do have more energy....I am able to play with my kids more. :) I hope everyone has a great weekend.....and I'll post early next week!

Charleston South Carolina

I love Charleston. I haven't been there in almost 4 years even though I live less 4hours away. I can't wait til the end of the month when I go to MUSC and stay for an extra day to play. I have visions of taking a carriage ride at dusk through the cobblestone streets in the historic district. Also, eating at a fine trendy establishment with hubs and staying at a very quaint Bed & Breakfast that has a turn down service that places chocolates on my pillow. Oooohhhh. Unfortunately, it may be the Red Roof Inn across the river in Mount Pleasant. Even that is a whopping $95.00 a night plus a zillion in taxes. I am going to continue to search for that Bed & Breakfast....all the way up to the evening before to get a good deal. At this point even if we made reservations at the Best Western in historic Charleston it goes for $189.00 per night. Whew! I'm not cheap......just frugal! Before the kids, Hubs and I stayed at The Ansonborough Inn .Very nice....my kind of place...."pre-kids". Don't get me wrong....my two little munchkins are worth the sacrafice of staying in luxury. I love them with all my heart, it just would be nice to stay somewhere like this again with Hubs.

Update on Procrit.... Hubs did my injection for me. He did very well! I am really feeling the affect of the Procrit....never thought that I would love an injection in my belly. LOL Anyone who knows me and needles will get a kick outta this because of my phobia of them. Procrit = my life coming back!

Sjogren's and kidney involvement??

Yes, it is possible. Many people have no clue what Sjogrens is.... actually for some people it isn't that bad. They have the dry mouth and dry eye symptoms. They attribute it to "old age" and take drops. I know those symptoms can be annoying as heck and can even make you change the way you live.

I have to laugh when I see medical journals or articles stating that although there is no cure for SJS it is not life threatening. HAHAHA It can be when it attacks your organs dufus's! I know I am in the minority on this, but I have met 2 others on Sjogren's World that have kidney disease caused by SJS. Another is getting looked at and he is concerned about his numbers. The key word is "CAN" be life threatening. Even if it does end up as renal replacement therapy AKA kidney transplant or dialysis....the quality of life seems to go up for most. Granted if you are on dialysis 3 times a week for 4 hours at a time....you need to adjust your everyday schedule to accommodate.

I have been educating myself on what seems to be the path my body is choosing to go down. I wish it would listen to my heart and my head. "KIDNEYS....DON'T YOU DARE QUIT ON ME". My Nephrologists believe that renal replacement therapy is in my future. How soon? They can't put a timeline on it.



It could be this year or 10 years from now. I can't help but think of that carnival game with the "sitting ducks" lined up ready to be knocked down.....I plan on being that "sitting duck" that won't go down.....the duck that sits there with that silly smirk looking at Sjogrens.....go ahead and try to knock me down....if you succeed, I will pick myself up!!

Update on MUSC

Well, at the end of the month I will be going to MUSC (Medical University of SC). I am happy to have specialists on top of the field to take a look at me. I will see a nephrologist and rhuemetologist. Hubs and I will take advantage of being in Charleston, SC and spend an extra day to play around. I will take pictures and post!

The second shot of procrit did make me sick about 8 hours after the injection. It was fast and only one time. BUT...I have to say that I feel like I have a little more energy. I am still exhausted, but at least I don't feel like I want to cry just because I am so tired. :)

I get my third shot of procrit today after work. Hubs still doesn't feel 100% like he can do it. He is so strong and anyone that knows him laughs when I tell them how much he HATES needles. He gets light-headed....even has passed out with bloodwork. And I have a phobia of sticking myself! I wonder if such a phobia exists.....I have it!!!

I wanted to share the Spoon Story that I came across. It makes perfect sense to all of us with a "silent disease."

Happy Fourth of July!

*hugs* to all our military personnel and "Thank You" for what you do!