Monday, December 28, 2009

Answers...or Not...

This morning, I got the results of my latest skin biopsy - as I predicted, NEGATIVE. Now, this is a good thing...this was a definitive lupus test - and the Mayo Clinic said no, I do not have lupus. This is very good.

However, we are back to square 1 - itchy, nasty rash that keeps coming and going, swollen fingers and fatigue, and an elevated antibody count in my blood. So now, we just wait for three months, to give the medication (Plaquenil) an opportunity to work. While this is a very good drug, "fast" is not an appropriate adjective for this medication. I return to the rheumatologist on March 10 for further bloodwork to see if the Plaquenil is working. If it isn't....then I don't know what is next.

So for now, our goal is to manage the rash as it comes - my dermatologist has asked me to come back during the healing process of the rash, because that is the only stage she has not seen it in. She is quite fascinated by all of this - not surprising given her interest in research. So I laughed and said sure.

On a positive note, I seem to be regaining at least some level of energy - enough to go through the unfinished part of the basement and the garage and clean and sweep them out. I also painted over the burgundy wall in my living room yesterday - all of which are good signs. But I still tire easily and some mornings, feel the full effects of gravity in my warm bed...

So that is the plan of action here. Can't say I am surprised, but am somewhat relieved to know I do not have lupus. Merry Christmas to me. :) Hope everyone had a great holiday with family and wishing everyone a safe New Year.

Thursday, December 24, 2009

How can you not love this face???

Long Overdue Vegas Photos...

Yeah, so I have been not such a great blogger...these are pretty tame. The one with Scott and the girl in the bikini was the Margaritaville Volcano girl that slid down the slide into the big bucket of Margaritas - it was quite interesting. Enjoy!

Monday, December 21, 2009

Moving into this Millenium....

No, I did not get a DVR...plenty of people are still working on me for that, but it is not a DVR that is moving me into this Millenium, but a GPS!!!

I got a Garmin for my birthday - I borrowed my parents the first time I went to see Scott and it was a neat little toy to have, esp in the middle of Nowhere, Pa. I would be at the mercy of my map reading skills if I ever had to get off of I-80 in PA, so it is as much a safety thing as anything. My map reading skills are suspect on a good day! Now I just have to figure out how to use the darn thing...

I know I have been a bad blogger as of late...I hope to update soon with some pictures of Vegas and other random things. Still no word on the rash, hope to hear sometime this week.

I hope everyone is ready for the holidays!!!!

Saturday, December 12, 2009

Doctors, Doctors and More Doctors...

As most of my readers know, I have been dealing with some puzzling health issues as of late - primarily random rash that tends to show itself about every 2 weeks. I have also been extremely fatigued - beyond anything I have ever experienced.

One month ago, when I saw the rheumatologist for the first time, I had a very elevated antibody count in my blood, typically associated with auto immune disorders. My most recent blood work as of 2 weeks ago showed the antibody count to be the same it was a month ago - yet all additional screenings performed were negative at this time for the associated autoimmune issues. My counts remain 5x the normal level, concerning to all the medical professionals treating me.

Suffice to say, this is a bit frustrating - on a positive note, several serious things were ruled out for now, which is a good thing. However, we still don't know what it is. The rash is back again this week, and I am as uncomfortable as I have been in awhile. My rheumatologist is also a bit surprised with the results of the tests - while he is happy several things have been ruled out, he is still very concerned that I show high antibody counts in my blood.

The next step was taken on Friday morning, when I returned to my dermatologist for an additional skin biopsy. When the first biopsy was taken, we were not testing for autoimmune issues. This skin biopsy is a definitive lupus test - in talking with my dermatologist, basically someone will know when within 30 seconds of looking under a microscope whether I have lupus or not. I actually had 2 biopsies taken - one in an area affected by the rash, and one in an area not affected by the rash. Key to the diagnosis process is that the area is a non sun exposed area - sun exposure can impact the make up of your skin. The focus will be on the non affected area - if that sample is consistent with the patterns presented in a lupus diagnosis, that will be very, very telling. The samples will be evaluated by the Mayo Clinic, which is just absolutely amazing to me - apparently, they have an amazing set up for stuff like this and my slides will be evaluated under a $60k microscope. And I know this because my dermatologist is in a one year research fellowship with heavy lab focus. How lucky is that???

Although my blood work does not seem to indicate lupus, autoimmune issues often present in their own unique circumstances - my experiences are very typical of many patients with autoimmune issues. Moreover, I am very blessed to be working with doctors committed to my care - my dermatologist had a question about the sample she was taking and she walked right out of the office and called my rheumatologist while I was there (before she started poking me with needles and cutting me!). I have her cell phone number and can call her anytime. How lucky is that??

So I hope to know the results by the end of next week...if not, I will know the week after Christmas. In the meantime, they are treating me for general connective tissue disorder. Basically, my body is attacking the good guys - for some unknown reason. Your skin is what holds you together - connective tissue - and as far as my doctors can tell, something went haywire and what holds my body together is at war with my own immune system. For now, I have started taking a drug called Plaquenil, which is used to treat malaria, lupus and rheumatoid arthritis. I was very hesitant to start this because they do not know what they are trying to treat - I was also hesitant because this is something that is a long term thing, meaning it will be somewhere in the neighborhood of 3 months before I see any results. The reason I agreed to take it was because he said if it was autoimmune (and in his mind, I have some sort of autoimmune issue, he just doesn't know what yet!) that the medication will help with the fatigue. So I gave in gracefully...sort of. One of the very less frequent side effects of the drug is retinal issues (1 in 200k peeps affected) but I am very freaky about my eyes and I told him that - I have been close to someone who does not have their vision and I am in no way willing to risk my eyesight. Accordingly, at the recommendation of both the rheum and derm, I will now add an opthamologist to the long list of my doctors. My dermatologist is working on finding one in my insurance group. Did I tell you how much this woman rocks? She even waived my co-pay on Friday morning ($40 a pop every time I see someone and we are now approaching about 15 visits in all of this)...and her bedside manner is just awesome. Dr. Mary Jo Kerns....Dermatologists of Greater Columbus for those in Cbus if you ever need it.

At this point...I just wait. The biopsy spots are very sore...a little different from last time - the ones from last time had stitches, these dont, and these hurt more!!! Go figure. And usually I can ignore that rash, but it has come back in triple whammy format in three spots and I am far more uncomfortable than I have been in a long time. Past history shows the stuff clears up in about a week, so I am hoping history continues to repeat itself. :)

I will keep you posted as I know more.

Thursday, December 10, 2009

Highlight of the Week

So it has been an up and down week...just sort of there. And freezing...miserable cold.

I have to walk Chelsie for rehab, and there was no way I was going out tonight. It was 19 before the wind chill. No, no and NO way was I going out. So I asked Belinda if I could use her treadmill - Chelsie did ok on it...but it still made me nervous. She was a little panicky on it, and sudden movements are not good for her little knee, so please pray for warmer weather where I can actually walk her.

So off we troop to B's...where I was greeted with the most amazing little greeters...Bryce and Teagan!!! Bryce looked so grown up tonight, and Teagan loves her big brother and wants to do what he does. Tonight, I taught Bryce how to leave treats on Chelsie's paws and then tell her it was ok to eat them. He told her to "leave it" and then put them on her paws..he started out with one paw and then saw me put them on both paws and wanted to try it. So proud of him, he mastered the skill in his first night! I also put a treat in Teagan's hand, and showed her how to give it to Chelsie. The look on her little face was priceless when Chelsie took the treat out of her hand!

After treats, it was bath time, so we trooped up and supervised bath time. Chelsie has to be in the bathroom with the kids during bath time...and I mean right there - like her nose is almost over the tub. She sits like a nice puppy should during bath...and I sure somewhere in B's bathroom, Chelsie's fur is the gift that keeps on givng.

The highlight of the week was definitely my evening Bryce and little buggers!! (and I guess Mark and Belinda too!) They are growing up so fast....Every time I see Bryce, he looks taller and Teagan's vocabulary and communication is changing by leaps and bounds. We are working on her saying "Cole" and "Chelsie Belle".

My little buggers rock...they definitely made a cold, dreary night a happier night!

Tuesday, December 8, 2009

Being Militant Has Paid Off....

This afternoon, Chelsie saw Dr. Kennedy for her 6 week post surgery check up. This was the visit where they took xrays of her knee to see how the repair was healing. The plates and screws were incredibly clear on the Xray.

All news was good. Dr. Kennedy was very, very happy with how the knee had healed! Told us he could tell we had been working very hard, and assured me that the hardest part was over. She has just a little bit of arthritis on her leg, which is why sometimes she locks it up during her stretches. He was also happy to learn she was going through the rehab she was at my vet - he feels the underwater treadmill will help quite a bit.

So, what does this mean?

- We can now go up and down stairs in a controlled manner.

- She can go on her retractable leash and have more freedom to trot about on her walk. We have been "walking with a purpose" - which resulted in continued use of the leg over a given period of time. In short, when I put her gentle leader on to go for her walk, she walks like a missile for 15 minutes. I can now give her the freedom to roam a little on her walk. I will still make her walk like a missile on most of her walks though...

- Still no jumping on furniture or playing with other dogs.


I am feeling an overwhelming sense of relief tonight. I was pretty sure all was ok...but you just never know. I was laughing with Dr. Kennedy about that - not knowing how much is too much, how much is not enough...I told him I screwed up on night one by giving her too much water, he laughed and asked if she threw up. Yep, I said, EVERYWHERE!!! This has been such an upheaval to everyone's routine...esp Chelsie. I am so, so proud of her for getting with the new program so quickly and being such a good dog. She has accepted my new rules and seems no worse for the wear. I am incredibly thankful for my parents - her little spirit would not be what it is today without the care they gave her over the past 7 weeks. I have no doubt that her not having to be in a crate all day with an ecollar has had a significant impact on her recovery.

So now, we continue on with the new routine..more freedom in the house and on our walks, stairs, no other dogs or roughhousing. Our last appt with Dr. Kennedy is month from now, which will be 11 weeks post surgery. We will likely continue to do underwater therapy, and hopefully, at our next appointment, we can talk about an agility timetable. My guess is that we will be cleared to trial sometime in April or May.

Thanks again for all your support.

Sunday, December 6, 2009

Hey Baby, Let's Go to Vegas

No, I did NOT kiss the single life goodbye!!! (Faith Hill song) Scott and I thought about posting a picture to FB in front of some little random wedding chapel and posting "What happens in Vegas stays in Vegas" but we thought better of it! I had an amazing time. Quite honestly, I don't have the energy to upload photos at this point, and honestly, I didn't take very many...although I do have some appropriate silly ones...think me fighting a gorilla for entertainment value...

My Vegas posse consisted of the following:

- Brother Joe
- BF Scott
- Cousin Michelle
- Cousin Kathi
- Roger, cousin Kathi's hubby
- Adrienne & Leno - friends from California

Anyway, here is my top 10 of my Vegas trip.

10. I was reminded of how much I love dueling piano bars. Scott and my cousin Kathi thought it would be funny to get me up there and have them sing to me...and trust me, it was NOT happy birthday they were singing to me!

9. I was reminded of how much I despise cigarette smoke.

8. Hoover Dam is an amazing structure. Took a tour of it and actually went inside the dam - took a photo from one of the little vents actually in the cement of the dam. They have a model of how the dams were built to control the Colorado river...the dam system to keep it under control spans 8 states or something like that! Never seen so much cement in one place.

7. Sat at a blackjack table and won $260 my first time out. I made some friends with some guys from Ireland and they schooled me on how to play. Came away with $220 in the black. Not bad. Set limits, stuck to them.

6. Saw crack and muffin top like I have never seen it before...all on the same girl. I seriously considered walking up and telling her that those jeans might not be the best for her. I will spare you the was awful.

5. Sat in a sports bar all day Saturday and watched Alabama DISMANTLE Florida and Arizona hand USC its 5th loss. Michigan wasn't playing, so they couldn't lose. :) Adrienne sat with us for a little while before venturing out...and we told her we would be in the exact same spot when she got back - and we were true to our word!

4. Best quote of the trip was found in the elevator of a was above a picture of a said:

"Trust us, you had a good time last night"

3. Ate all varieties of steak...the Delmonico's version of fillet Mignon and Bill's Saloon's version at 3:45 AM. Both tasted equally as good in their own way and both were a heart attack waiting to happen.

2. I was reminded that I am indeed 35 and not a 22 year old that can party like a rockstar for more than one night. I think it was the Royal bomb shot that did me in...a shot of Crown Royal in a glass of peach schnapps and Red Bull. For those of you who know and love me dearly, you know my code name for Crown...yep, you got it....gasoline.

1. Number one goes to brother Joe, who had to make an emergency landing in KC, Mo on his way out because some lady got obnoxious and started threatening people. Apparently, she had never flown by herself, took something to help relax her and then started drinking on top of it. Joe said the pilot literally had the plane pointed down...that from announcement they were landing to landing was less than 20 minutes. Apparently, she also tried to resist arrest..which rsulted in the police tossing her down in the aisle way of the plane. Jesus lord, people, get a grip.

All in all, it was a fantastic trip. I spent it with people who are very dear to me, and we all just had a really great time. I lived it up...ate what I wanted, stayed out until all hours of the was an eye opening experience for Scott. He knows me as the reserved, routine oriented, anal retentive accountant that I am. He actually commented that he was glad I let loose a little bit...I laughed. Most of my friends that did not know me in college can't ever imagine me being wild and crazy, even on limited basis...but I am guessing there are a few of you out there that know better....

Thanks again to my posse for a wonderful weekend...I had such a great time. Thanks also to:

- Maggie (my mom) for watching our (Joe and I) puppies, Chel and El. They have to be closely supervised and cannot be left alone because Chelsie is still recovering. They got a good report from Grammie.

- Auntie (my mom's sister Eileen) - she watched Michelle and Kathi's kids, all 4 of them. Toddlers and teenagers, all in the same weekend (Amanda - 13, Jenn - 11, Tessa -5, Makenna - 3)

Tuesday is our 6 week xray day...please think good thoughts for my little bean's knee!!!!