Health Care Frustrations !!

My purpose in this blog is two fold: 1. To vent, and 2. To let fellow lupies know that they are not alone when it comes to health care frustrations. Let me start by saying that I generally like my team of doctors. I expect a lot from my doctors and if they don't live up to my expectations, I fire them. Since my lupus diagnosis I have had 2 lupus doctors, 3 obgyn doctors, and 4 primary care physicians. I know that makes me sound like one big B****, but insurance and health care is expensive. I want the best for my money. I have learned that I have to be my own advocate! So here comes my rant! I find that all too often I have to diagnose myself and then convey the diagnosis to multiple doctors to be certain that the treatment doesn't conflict with a treatment or medication from another doctor. I have been having bladder issues that I mentioned previously. I want to a urologist on Thursday. His office was just switching over to electronic records. I told him how happy I was that my doctors would finally be able to share my records with the click of a mouse. Much to my dismay, he informed me that it won't work that way... yet. He went on to inform me that there are numerous ( I think he said about 24) vendors who are selling programs that meet the qualifications of the federal mandate which calls for all medical offices to switch over to electronic records. These 24 different programs do not communicate / share with each other, thus making it impossible for doctor A to share with doctor B in this new electronic age. My doctor then went on to explain that in order for his small office - 2 doctors, 1 nurse, 4 office staff -to afford this electronic upgrade, they had to merge with a larger office to cover expenses. This may explain why my co-pay went up from $20 to $40. Backing up a bit - when I first was called back to the exam room, the nurse had a technology support specialist with her, training her how to use her new laptop. The first order of business was to renew prescriptions. The second order of business was to update medical history. The nurse said to me - I have you down as taking no medications, is that still correct ? In my head I'm thinking... ummmm no, do you not remember handing me the prescription? Okay, again I'm not upset with the person as much as the process. The computer training should have taken place out of the office, not with me. I was pretty sure that the nurse was seeing this program for the first time. The tech specialist was telling her, " now ask her.... " and so the nurse would repeat what the tech specialist had just said. I almost told her that she didn't need to repeat the question, but I wanted to seem as polite as I could so I just waited for the repeat and then answered. As if this wasn't enough, every question only had a place for her to mark "yes" or "no" and I the answer to each of my questions was "sometimes." For each question the tech specialist had to show her how to unlock the cells so that she would type my answer. When she left the room I felt like she maybe had learned how to sue the computer, but hadn't heard a word that I had said. Back to the doctor. - At the end of our conversation he felt more comfortable with me seeing another specialist and proudly announced that since their two electronic systems possibly didn't communicate that he had faxed his notes over to the other specialist's office. I thanked him and wished him well in implementing his new system as he wished me good health. I paid a $40 copay for... what...? ? ? Saw second specialist today. - No lap top toting nurses.. we are off to a good start! I explain to her why I am there and ask if she has the notes from yesterday's visit.. she hasn't. Long story short - she can't find them so she calls to have them faxed again. The never arrive! Fortunately I had written down everything that the first doctor had suggested to me and was able to convey the information. Yay Dr ME ! For the purpose of sharing with other lupies - What's going on now ? - Since I started going through drug induced menopause around age 29, I have no estrogen to speak of at the tender age of.. mumbles incoherently . Parts of my body think that I am elderly and are extremely irritated by my physical activity. The solution - estrogen cream! I hope that in three months time, I will be as good as new, and my doctors will know how to use their computers! End of rant! I feel better already! Oh.. did I mention the cost of the new med? ! ? Wow!

Recovery Week With Few Miles

In the last month I have done two things that I am very proud of: 1. I ran 20 miles. 2. I ran the Hawkeye 25k Race Course. I wasn't sore at all after the 20 miles, but was REALLY feeling the pain after the 25k. If you are doing the math real quick on your fingers, ( I teach 2nd graders so find finger counting perfectly acceptable) 20 miles is more than a 15K. The 15K was on trails and had some hills, thus the difference. I always joke by telling Tim, "Deb loves hills." Nothing could be further from the truth, but maybe some day I will convince myself! As a result of this pain, I had very low milage this week. I had 1.5 miles in swim, 0 on the bike - sorry Betty ( Betty White is the name of my bike - remember I teach 2nd graders - I am full of names and sayings) and 25.5 miles of running.

My totals are: swim 1.5, bike 27.3, and run 25.5. My goals before the start of next school year are: 25 miles of swimming, 125 miles of running, and 1,000 miles on Betty.

On the lupus front, I have an appointment with the urologist this week. I am having some issues that I believe are lupus related. I always wonder if I should just come out and tell the doctor what I think the problem is, or give them the info and wait for them to tell me. I had a primary care physician who loved it when I would come for a visit because we had a deal worked out that I wouldn't tell him what I thought, just symptoms and then we would compare our answers. We often had the same answers. I miss him, he took a job as a hospital administrator. I'm thinking that I will probably tell the doc what I think is going on, since I have read that it is common among women with lupus. Lucky me!

Actually, I am lucky to be alive to be experiencing this, so I won't complain!

My Spring / Summer Goal

I'm dusting off the blog and going to use it for some goal setting. I like to swim, run, and bike.. so here are some goals: Between now and the start of the 2012 - 13 school year I want to: Swim 25 miles, run 125 miles, and bike 1,000 miles! I have done two bike rides this week totaling 27.3 miles.

My Lupus is What?

Active. That was a difficult word to hear and even more difficult to accept since I have been fortunate enough to have little to no lupus activity for several years . I have been experiencing sjogren's syndrome symptoms and am taking prednisone again. Although I am taking a small dose I am having a difficult time with it this time. It makes me have terribly vivid dreams that keep me awake, oh did I mention awake... oh how it keeps me awake! I'm wondering how on earth I survived taking a much larger dose and for several years.

I refuse to let this slow me down, so I will continue with my spring half marathon training. This is the first time that I have started a training program while being on lupus medications that are not just for maintance. Today I finished my first week, with my long run being 3 miles. So far, so good.

I have received several email comments from people wondering if because they have been diagnosed with lupus, will they be forced to give up an active lefestyle. I always encourage others to keep moving, this time I'll be encouraging myself!

I am running, won't you come with me?

May is Lupus Awareness Month. I will once again asking for your support.
On May 8th I will be running another half marathon to raise money for the Lupus Foundation of America.

This year I will be giving back to my supporters. For every $5 that you donate, please enter a ticket with your name on it in my drawing bag. I will be giving away $10 gift cards to Borders, Cold Stone Creamery, and Barnes & Nobles, a $25 gift card to Borders, and a Subway Peeler Card. There will be a total of 5 winners.

I am doing the Sponsor My Miles again, so write your name next to a mile that you would like to sponsor. I am reserving miles 1 & 12 for $25 donations, because those will be the most difficult miles for me.

You can donate several ways:

online at www.firstgiving.com/lupus_runners. The name on this page will be Cruz Pitre. He is the head of our group, Lupus Runners. Please note my name in your donation line.

donate cash into my purple bag that is on my board in the teacher workroom

write a check and put it in my purple bag. make it payable to me,

Thank you so much for all of your support!

Look for something new next year..........

Lupus Foundation of America's Advocacy Day

http://lfa-inc.blogspot.com/2010/03/participate-in-lfas-advocacy-day-on.html.

On the Road to a Lupus Cure
Join the Lupus Foundation of America as we continue down the road to find a cure for lupus, a devastating autoimmune disease that affects between 1.5 - 2 million Americans, and 5 million people around the world.
Friday, March 12, 2010
Participate in the LFA’s Advocacy Day on Tuesday, March 16 – from the Comfort of Your Home

As you have no doubt heard, LFA’s 12th Annual Advocacy Day on Capitol Hill is Tuesday, March 16. Hundreds of lupus advocates from around the country will come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.

Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.

Here’s what you can do from home.

Send an email, call, or write your Congressman or Senator.
Raise awareness by sending an ecard.
Spread the word on Facebook and Twitter, or through your blog.
Everything you need to know about doing one – or more – of those 3 options above is now available on the LFA’s Advocacy Day landing page.

Remember, we really need you to make your voices heard on Tuesday the 16th.

Spring Half Marathon

Our Spring half marathon will be the Indy Mini on May 8th. I am currently organizing details on my fund raising plan for the Lupus Runners group. Tim and I have done this race before, but I don't mind a repeat because it was so much fun! This is one of the largest races that I have ever done. There will be 35,000 participants this year, and the race is already sold out!

A few highlights from the last Indy Mini: Tim nominated me to receive the " Celebrating Life Award." It is an award recognizing athletes participating in the race who live with a chronic illness. I was not the final winner, but did get an award that says, "Your courage and determination are an inspiration to us all. Congratulations and best of luck in tomorrow's race!" What a wonderful honor to have Tim do this for me. He wrote a wonderful narrative about my life with lupus.

Race morning was exciting. You line up at the start by your estimated finish times. At the time, I was still walking most of the race, so I started back at letter X. Tim is speedy, so he got to start at C or D. It took me 26 minutes from the start of the race to finally get to the start line. Thank goodness for timing chips!

The final big point that I recall is the lap on the track of the Indianapolis Motor Speedway. That was really cool! This year the theme of the race is celebrating the 100th anniversary of the Speedway, so I'm thinking this will be even better this year.