Questions

I have been seeing my current rheumatologist for over a year now.  At first I wasn’t sure about him, his bedside manner is a little… cold at first.  Within the first few visits he started warming up and I noticed he was very attentive, unlike the quack I saw before him.  His office staff is amazing!

I have a follow up appointment with him next week. I am excited to report that I am starting to feel a smidge more human, but I am still hurting something fierce and this damn insomnia is driving me nuts! When I got in next week I want to talk to him about hitting the hot tub and the sauna. I am not sure if it is ok to be in either because of the prednisone screwing with the immune system.  I want to talk to him about trying to get back into weight lifting, I mean I understand that I need to listen to my body and I can’t try to pick up where I left off.  But do I wait until I am completely out of this flare up or can I slowly start to add it back in?  What about travel? How do I travel safely (not getting sick) while in a flare up? 

I have always been taught you are your best advocate.  This is an understatement when it comes to the doctor’s office.  Getting in with a rheumy is not an easy task, when you do get an appointment you need to figure out if you can trust this person and if it is someone you can talk to.  If your rheumy doesn’t listen to you how likely are you to listen to them?

  Stolen from RheyMed…

Alist of questions you should not forget to ask:

 

• What is my diagnosis? Are other diagnostic tests required?
• What will happen to my body as a result of this condition? Are there any other areas of my body that might be affected?
• Should I expect any complications? If so, what?
• How and when should I exercise?
• Do I need to consult a physiotherapist?
• What are my treatment options to relieve symptoms?
• What is the purpose of the treatment/medicine you suggest? (Pain killer / Anti-inflammatory)
• How and when will this treatment make me feel better?
• What are the potential side effects of treatments/medicines?
• What should I do if I experience side effects?
• How is my condition likely to change in the future?
• What activities should I modify or avoid?
• Which part of my body should I avoid straining?
• What lifestyle changes should I make?
• Are there any devices that can help me in doing my daily tasks?
• I have certain special concerns (e.g., fertility, pregnancy, offspring, alternative medicines, surgery, special diets, relatives with tragic outcomes with similar diseases or medications). How do these particular issues relate to my condition, and how do you feel about them?
• Is there a particular diet plan I should follow or avoid certain foods?
• Do I need to lose weight? If yes, how much?
• When should I come back for the next visit?
• May I call you or contact me via internet to give you a progress report?
• If this treatment/medicine routine does not work, what are the other options?

 

Kid

 

The long road back

8 August 2012 I woke up and felt like I had been hit by a mac truck.  I have been on the edge of a flare up for the better part of the year but finally it hit me full force.  I was hoping it would be over in less than a week but here we are more than a month later and I am still trying to recover.  I have improved, but I have a long way to go before I am anywhere near back to normal. 

On my race schedule I had a full iron distance triathlon (2.4 mile swim, 112 mile bike ride and 26.2 mile run all in less than 17 hours) coming up in October 2012.  Having a flare up right in the middle of training crushes that plan.  I have not been able to step foot into the gym in over a month.  Today I finally made! Knowing my come back will take time and patients I came up with a plan, I would pool walk! I went in with one mile in my mind, but my body did not agree.  I was so excited to complete a whole half mile!  This is the first time in years I have not been training for a race, I am just training to get my mobility back.  In a way it kills me knowing that it took me almost 20 minutes to walk a half mile and I couldn’t go any further, but on the other hand I was so excited that I was able to do a half mile.

I realize I have a long road ahead of me and I will have speed bumps along the way.  My goal right now is to build up to being able to attend a water aerobics class, it might take me a month to get there, but I will get there.

Having physical issues makes staying in shape very difficult.  Water walking/running is a good low impact exercise. 

 

Kid

 

Good-bye to an amazing individual

This week was a little hard on me.  An amazing individual (fellow luppie) whom I only met online passed away due to a heart attack.  This gal had a light about her that was very easy to see even over the internet.   Mo is a very spunky girlie-girl who loved high heels, glitter and Winnie the Pooh.  She had some of the cutest graphics that drew much needed attention to lupus. 

I was supposed to pick up something for her on my next vacation, sadly that won’t happen, but I came up with something I am going to do in honor of her while I am gone.  Also, the day after I found out about her death I had a nail appointment, in honor of all the luppies who got their wings to soon I had a butterfly put on one nail per hand.  My nail gal added glitter to the butterfly’s wings which made it that much more special.

Gentle hugs to all my fellow luppies and their loved ones!

 

Kid

“She is ill”

Over the weekend we were out grocery shopping with the minions.  I forgot what lead up to it but my sister made a comment about me being ill.  The more I thought about the more I realized it hurt my feelings.  I don’t know if it was because that is the first time I actually heard it out loud or what it was.  Whatever it was, it hurt my feelings!  When I told my sister that she hurt my feelings she apologized, she didn’t mean to.  I know I am having issues right now, I had a hard time going to the store today to pick up a few items that we missed this weekend.  But hey! I am doing better than I was a month ago!

Kid

 

When life gives you lemons...

For better or worse lupus is not a “popular” disease, to make matters worse it isn’t the same for two people.  I have been a runner and a triathlete for almost a decade, a few years ago my life went through a complete upheaval.  I was hurting for no obvious reason, I had no energy, I was having issues breathing, it was horrible.  I started to feel like I was a hypochondriac, I was at the doctor’s office almost once a week.  After a number of months my primary care doc put one and one together and did a full work up.  I didn’t think much of it.  I received a call requesting a follow up appointment sooner rather than later.  I sat down with my doc and she asked me if anyone in my family had an autoimmune disease.  A what??  She rephrased it and asked if anyone in my family had lupus.  No.  I really had no idea what lupus was, I had heard of it, but in passing.  My doc wanted my blood work redone in three months, just in case.  Three months later, the results came back the same.  I was referred to a rheumatologist who ran her own blood work and ended up diagnosing me with lupus.   By that point I had started doing my homework.  I had made dietary changes, I had made life style changes, I figured I had everything under control. 

I was supposed to compete in my biggest race this coming October, but lupus had different plans.  So my sister and I adjusted our plans… When life gives you lemons...make a margarita!

 

Kid