Thoughts On Living With An Illness...Opening Up, Shutting Out, and Coping Methods

I have always thought of myself as a very open individual when it comes to my health condition. There are people that I will share my story with in all the detail they want, and then there are people I might not share as much. I have no problem talking about my health, and I do not have a problem with others talking about it to their family/friends, but for some reason there are people in my life that ask how I'm doing just to ask (not really caring about the answer), so they can then go and talk to others about it, and at that point I shut down and don't reveal anymore to them. As do I shut down the ones that ask me how I am and then turn around and say I'm faking it because "I don't look sick".

I tend to shut out the "worry warts" (only when it comes to my illness...not all together). This is different from those that are genuinely concerned. The "worry warts" literally freak out with nearly anything I do (whether it's school related, work, leisure time, or when considering having kids). They see my disease rather than seeing me. I consider myself to be a relatively independant person and when one starts to worry about me to the point that it interferes with my life and try to make decisions for me, it annoys me. I was diagnosed over 10 years ago...I know my body better than anyone else out there and it just rubs me the wrong way when when someone repeatedly tells me I shouldn't do something because it might be too dangerous for someone with my health condition. Sure, I might get run-down easily, but that does not mean I want to stop LIVING. I know my body well enough that if I really don't feel good on a given day, I might choose to stay home and rest. That doesn't mean that I don't ever want to do anything...I just don't want to do anything that day. :)

Then there are those that are genuinely concerned. They see me for me and they know how to separate me from my disease. They ask questions, but do not judge the way I live my life, infact, they help me embrace it. They care about my health, but they know that I'm determined to live. I love things that most adults (and even kids) love. I love water slides and fast roller coasters. I love the rickety carnival rides that appear once a year at State or County Fairs. I love going to sporting events and concerts. I love the idea of sky diving, riding in a hot air balloon, or taking a helicopter ride in the mountains someday. The ones that are genuinely concerned know that these are just some of the things I enjoy and they know that these are activities that many people enjoy (healthy or sick)!

The "worry warts" would not see it that way. They'd tell me I need to be more careful. Sure, that may be true to an extent. Perhaps I wouldn't be able to stay out as long as someone that is healthy. I have to know when to quit. But the "worry warts" want to be the ones to tell me to quit before I even start. It's almost like they want the control. It can be dificult to deal with at times.

I think my illness has shaped the person I've become, and I see it as a blessing rather than a "disease". Sure, I have bad days (who doesn't?), but when it comes to my condition, I embrace living with it. Do I hope for better treatment? You bet! Do I hope for a cure? Absolutely!! Living with an auto-immune disease and the experiences I had as a child, teenager and now as an adult gave me great insight as to what I wanted to do with my life. I wanted to work in healthcare and help infants, children and teens who are chronically/terminally ill. My original goal was Medical School. However, that was one thing that was not physically possible for me. So, I went into Dietetics/Nutrition. I want kids (and their parents) to know that they have someone who understands their situation and WANTS to help them. I empathize with their frustration, hurt, various coping methods as well as their hopes, faith in proper treatment and the list goes on. I want to be able to share that in my profession and I really feel that this is God's Will for me.

Well, this has gotten longer than I thought it would. Thanks for checking in! Can't believe this Sunday is already Palm Sunday and the beginning of Holy Week leading into Easter and the day after Easter is when I find out if I get that Dietetic Internship I so badly want.

God's Blessings to everyone! I'll write again soon!

Amanda

New Jobs and Crazy Colorado Weather!

Well, prayers have been answered and Aaron has a new job!! We are thrilled that he has this job. He is working for a company that develops online grade book systems for schools K-12. Right now he is starting out in customer service, but after his training is done and if he is able to catch on to the work, etc, then he will move to a different level. This is very exciting news as Aaron has been looking for a new job for quite sometime. He just needed something different. Eventually, after his 90 day "trial", he should become eligible for benefits which is great news all around!

Now, we are just waiting to hear if I get into my internship. I find out April 5th, so if you all could please keep me in your prayers for that, I would greatly appreciate it! This is something I have wanted for a very long time and am so close, yet so far away from getting it.

Colordao weather is keeping us entertained. Last week it was in the 70's all week until yesterday when the temperature dropped to 20 degrees, and we had a crazy snow storm (about 5 inches in our area) and over a foot of snow in the mountains. But thanks to unpredictable Colorado weather, today was about 50 degrees, and nearly all the snow is gone already on the front range/foothills. One of the many reasons we love Colorado!!

Hope everyone is doing well! It's hard to believe today is the 1st day of spring, and we are just a few weeks away from Easter! Wow, time flies!

Take care all!

Amanda

Vegas

Well, Vegas was a great time! We got there at 9AM on Monday March 1st and did not even have to wait to check-in to our room (which was so nice)!! Then, we got a FREE upgrade to a spa suite which was the best thing! It was great to be able to come back to the hotel from a fun-filled (all-be-it FULL) day of walking, shopping and ofcourse gambling and be able to kick back in the hot tub and watch TV. Plus, we kept the hot tub filled each night which added the bonus of increasing the level of humidity in the room (something that is good for my dry lungs). And I think it was because of the hot tub in our room that I did not get sick while in Vegas. Some pics of our room and the view we had!

A couple of views of the strip from our room and inside our room!

Aaron was the one who gambled (I'm terrible with gambling). He only plays Roulette and always has a set amount that he spends out-of-pocket in Vegas and if he wins, great and if not he stops (which is nice so he doesn't drain the bank)! :) He ended up coming out well ahead of what he laid on the roulette table and made enough in gambling earnings to pay for all of the meals we had, the show that we went to, and part of the hotel...so that was nice.

Inside Ceasar's Palace

M&M World!

One really exciting thing that happened while we were in Vegas was that we got to meet Dick Butkus (played for the Chicago Bears NFL team). Aaron is a Bears fanatic, so this was like heaven for him. He signed a picture that Aaron purchased and then just sat and chatted with both Aaron and me for about 20 mins. He was very down-to-earth and humble...just a really great time! Here is a pic of us meeting with Mr. Butkus!

We went and saw a Hypnotist (Anthony Cools) while we were out there. He was hilarious! The stuff that he had some of the people doing was just so funny I almost cried! It was hard to come back from Vegas, but it's back to routine and that's nice. Well, I best be going. Hope all is well with everyone! Take care and I'll try to write again soon.

Amanda

A long time comin'!!

Hello Everyone!

Yes, it has been a very long time since I have updated this blog. I guess I felt I didn't have much to write, but now that I sit and think about it, there actually has been a lot that has gone on.

I was laid off from my job in August, 2009 (which was for the best). I then found a job as Asst. Director of Nutrition at a local nursing home in October. I absolutely loved the job however, much to my surprise, I was laid off after the New Year (I now have the feeling they brought me on only to get through the holidays). As bummed as I was, I figure everything happens for a reason and I am at peace with this situation. I am blessed to be able to collect unemployment and still have health benefits. Things could always be much worse.

Now that I am unemployed, I have used nearly every waking moment applying for Dietetic Internships to become a Registered Dietitian. I submitted my application in February, but will not find anything out until April. The competition is fierce to say the least, so I will admit I am nervous. The program accepts 40 interns and last year they had around 280 applicants!! YIKES! So, the current prayer request is that I get into this internship.

We are also gearing up to host the 31st Annual Wells Fargo Cancer Tennis Tournament. As Directors of the tournament, we are staying ever busy in coordinating the tournament to make sure it is a huge success. Last year we raised around $18,000 and are hoping to come close to that again this year. The tournament is going to run from June 1st-6th...and time is flying by!

My mom was out here for a week in September to celebrate her 50th birthday and that was a fun treat. We went to a baseball game and then went to the Royal Gorge and rode the train and finished the day with sight seeing. It was a blast!

Royal Gorge Train Ride

Rockies Game

Aaron and I will be heading to Vegas for a few days on Monday. I can't wait. Aaron has been working so hard lately and really needs a break from it. So, it was kind of a last minute decision, but I can't wait!!

As we approach the middle of Lenten Season, I have been reminded that I have a Savior who loves unconditionally and died on a cross for all our sins. As Lent continues, let us all be reminded to be vigilant during this time, remembering that Christ paid the ultimate sacrifice all because of love.

Peace and blessings to you all!!

Amanda

Tournaments, Anniversaries, and School...Oh My!

I just realized that it has been about 2 months since I've written on here. Seems like a lot has happened (good things, ofcourse) and I find that I didn't have time to write on here!

I went back to work for 32 hours/week on May 13th. Work...well, it is what it is with that and I'm so glad that I'll be done in less than a year (when I start my Dietetic Internship). I'm still looking for another job, and I pray that I can find one here eventually. The stress from work does not help my health.

I am however enjoying my 32hour work weeks! Gives me extra time to study since these 6-week long classes are tough! And that's an understatement. I actually started and finished 2 classes since I last wrote! I took a Nutrition Assessment class and a Nutrition Counseling class. I enjoyed both classes and was thrilled with my grades! The classes went from May 18-June 29th. Now I am in Advanced Nutrition and Clinical/Nutrition Assessment (until August 5th) at which point I will be DONE! All that remains is my internship which starts next summer and then I will be a Registered Dietitian! :)

Our cancer tennis tournament (June 1st-7th) went great! Juggling that, work, and scool made life a complete whirlwind for about a week, but it was worth it. The cancer tennis tournament celebrated it's 30th Anniversary this year and Aaron and I took over as Directors this year. It was a lot of work and we ended up with about 160 entries and raised around $17,000...well worth it!

Aaron and I also celebrated our 1 year wedding anniversary on June 14th. With both of us in school right now, and work being so stressful, we decided to stay near home. We went to the zoo, toured Coors Brewery and caught a Rockies game! It was a fun filled Anniversary and I can't believe it's been a year already!

Me and Aaron in front of the flamingos!

The gorillas

Da Bears! ;)
Flamingos!
Lions!
Coor's Brewery!
Rockies game!

My health has not been all that bad considering all the events going on in life right now! God carries me through whatever is going on and for that we give Him praise! None of this would be possible without Him!

Aaron and I are getting ready for the 5k Race Against Cancer tomorrow. I enter all the registration forms and then on race day, we work at the finish line timing and scoring the event. Typicall there are about 1700 runners, so I've been terribly busy once again...but all the tennis tournaments and 5k races will be done after July 4th and I can focus 100% on school and work!

Thanks for stopping by my blog! Much love to you all!

Closing with scripture:
"Be assured and understand that the trial and proving of your faith bring out endurance and steadfastness and patience." James 1:3

Love,
Amanda

Answers...

Well, I got the rest of my blood work back today and the final results (from weeks of blood work and waiting) are:
Sjogren's Antibodies= Extremely Elevated
SED Rate (detects Inflammation)= Elevated
Potassium= Slightly low
Vitamin D= Low

On top of it, I had an Eye Dr appt yesterday. He did a routine exam (when Sjogren's is involved, I have to have a few extra "eye moisture level" tests done). When my Eye Doc went to do these tests, the results revealed that I have ZERO moisture/tear production. That explains a lot! It's part of the "flare-up". It was newer territory for me, because I have NEVER had an eye test result in NO tears until yesterday. Always on the "low" side, but never on the "zero" side. Even more funny...I told the eye doc that I didn't notice anything "new" with my eyes. So when he revealed the results that I had zero tear/moisture, I was surprised. We both agreed that I must just be used to it.

I'm starting to do better. So, lots of things going on to make me feel sick. Just taking my regular meds (I'm done with the steroids) and 2 new meds to help with nerve pain and fatigue...which helps Sjogren's and SED Rate levels. The potassium is just slightly low, so I'm going to treat with food (being a Nutritionist and all, I know what needs to be done to fix any Vitamin/Mineral Deficiencies)!! But the Vitamin D Deficiency is too low for me to treat with food, so I'm taking a Prescription Strength Vitamin D Supplement for 3 weeks. Many of you know how much I HATE supplements (other than a multi-vitamin) unless it is a 100% true medical deficiency. But with my situation, it's only a few weeks that I have to take the supplement, and it came from my Rheumatologist. Its not like the advice came from somebody trying to make a sale, and I trust my Rheumatologist completely.

Easy enough, right?! I think so. Just treating with the proper medication and praying that the Vitamin D Supplement will help and all of my other blood work will be "normal". I'll always test positive for the Sjogren's anti-bodies, but the SED Rate and any Vitamin/Mineral Deficiencies should go back to normal after the proper treatment.

It's just another wait-and-see right now, but I am confident that these things all combined together will provide the results I have been waiting to see for a long time (well, since February to be exact).

Thanks to everyone for your prayers! They mean so much to me! Take care and I'm sure I'll talk to you all soon!

Love,
Amanda

Update

Guess I didn't know what else to title this! Well, I had another Dr appt yesterday and he determined that I still don't look all that great (gee, thanks, huh)...but I knew what he meant! :) He added another medication to my stash, which has me up to 7 different medications/day (13 pills/day total). YIKES! That seems like a lot, but it must be done and we are still trying our very hardest to not open up the doors of chemo again. So, pills it is. The doc also ran some more tests yesterday:
Muscle Enzyme
Vitamin D
Vitamin E
and also testing my Potassium levels again

Right now, the plan is to just keep resting and trying to get my blood work to come down (the inflammation/enzyme) and up (the Vitamin/Mineral levels). It's getting a little frustrating to still be so sick, and yet I find peace. Peace like a river. It's hard to explain, and I think that's because the peace can only come from one source...God.

I will keep you updated as things change. Thanks to everyone for the emails/prayers/phone calls...I love them!

Oh, and on a truly positive note...I got into all of my Dietetics Classes! When I got my Nutrition Degree, there were 4 classes that I was missing to get my Registered Dietetician (therapy/counseling classes). I got into all of the classes through Univ of Northern Colorado. I start May 18th and will be done in August. Then, in January I will begin the Internship Application process and by June of next year I will be in my Dietetic Internship (which should last 6 months). I'm so very excited about this! :)

I would not be able to hang on and do all of this without the support of my wonderful hubby! He truly takes such wonderful care of me. He stays up and takes care of me in the late hours of night, among doing the other countless things to help out (dishes, laundry, yard work). He is truly a wonderful man!! Thank you, honey! I love you so much!!!

Ending with scripture...

Ps 4:8 "I will lie down and sleep in peace, for you alone, O LORD, make me dwell in safety."

Thankful for the peace,
Amanda