Sunday, April 29, 2012

But, I Feel Fine!

This week started off with a surprise. I had done my yearly 24 hour urine collection for my kidney doctor and had to drop it off at the hospital early Monday morning. Let me pause for a moment to tell you how FUN it is to have to collect every little drop for 24 hours.... ugh! I know, I should just be thankful that I am alive for another 24 hours.. okay - back to the story. The blood draw was pretty routine and I headed off to work. The doctors office called me within a few hours to see if I was, "Feeling better?" This was a shock because I didn't know that I was feeling bad! The nurse informed me that my blood sugar level was 45! Story break for informational purposes - Normal level would be 65 - 99. Okay - after reading about symptoms and normal levels and talking to some health care professionals, I have my doubts that this was a true reading. I felt fine, actually good. Another odd tidbit, I had fasting blood work done 3 days previous and my level was 72! The story gets better. This is the same doctor that called me last year at work and told me that my potassium levels were extremely high, and that I needed to go to the ER IMMEDIATELY, as I was in danger of having a heart attack! That news was enough to make me have a heart attack! ( I followed doctors orders and upon recheck was fine! ) Back to the nurse - she told me that IF, "I was concerned about this, that I could call my PCP." WTH... IF I WAS CONCERNED? Then she proceeded to tell me that the next reason for her call was to cancel my appt. I'm guessing that she wasn't too concerned about my kidneys either, as she wanted to reschedule my appt. for July. I proceeded to visit with Dr. Google and found that hypoglycemia can be a side effect of my lupus medication, so I called my lupus doc and left a message. Her nurse called me back and told me, " She doesn't think your medication would do that." OMG IS THIS ALL A JOKE? Tim and I both had found this connection, but she didn't think so ? SSSSOOOO, I told her that I was seeing my PCP next week or did she think that I needed to see if I could get in sooner... she didn't answer! I still feel fine and have felt fine, so I guess I'll drop this in my PCP's lap when I see her later this week... WEIRD I SAY... WEIRD! Okay... time for the numbers... this week I ran 14.1 miles, biked 16.5 and swimming 1. This brings my totals to: Run 37.6, bike 69.1, and swim 3. My goals are: run 125 miles, bike 1,000 miles, and swim 25 miles. I did them all in order this week! Have a great week!

Sunday, April 22, 2012

Let's Do The Numbers

I have been thinking of another new goal that I want to achieve this summer. I want to do an ironman length triathlon... over the course of a week! ( I got you, you thought that I was going to say I wanted to do an ironman!) For those of you who don't know the length of an ironman is 2.4 mile swim, 112 mile bike, and a 26.2 mile run. I think I can do this! Okay.. right to the numbers for this week: bike - 25.3, run - 8, swim - 1/2. My totals are now: swim - 2, bike - 52.6, and run - 23.5. My goals are: swim - 25 miles, run - 125 miles, bike - 1000 miles. I know I didn't do those in order, I wanted to be sure that you had something to think about.

Friday, April 20, 2012

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!

Sunday, April 15, 2012

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!

Friday, April 6, 2012

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.