T minus 4 days!!!!!

As I type this I am surrounded by suitcases because Nink and I will be departing on vacation in four days (nah, we are counting down or anything).  Being a Luppie I have some major concerns about the trip.  Most important thing is my lupus (still being in a flare up can be a minor concern),  it is imperative that in case of an emergency Nink can provide an accurate list of the pharmacy I take every single day.  I am allergic to certain meds and with everything I am taking if something were to happen to me I don’t want a strange doctor to find out the wrong way I can’t take this or that.  I have all my meds refilled, so that is a non-issue.  Nink and I have seven, yes, seven, bottles of sunscreen packed.  Dietary restrictions is another MAJOR issue for me.  But at this point in the game I am not worried about it.  The vacation we have planned has a reputation of being very flexible with dietary issues.   To be honest I have been pleasantly surprised how flexible most places are.  We have a local brewery that creates a special meal for me, I think the head chef has fun because I let them make whatever they want as long as it fits into my restrictions. 

Nink has been busting her butt to help me for years and this is the first true vacation she has gone on in about seven years.  This is something she is looking forward to and I am excited to be going with her, even if I am the primary pain in the butt. 

Not sure how often we will be posting while on vacation, but trust me, there will be a LONG post when we get back!

 

Kid

 

Emotional Luppie!

Ok, so today was one of those days when I feel bad for my sister.  I have been in one hell of a mood and all my sister can do is sit back and run for cover when I throw a fit!

I have been very emotional lately, part of it has to do with the pain, but that isn’t what is getting to me these days.  In 14 days I should have been toeing the line for my first iron distance triathlon (2.4 mile swim, 112 mile bike, 26.2 mile run).  My goal was to complete an iron distance before my 35^th birthday. I was all ready to do that, my training was going pretty well, then this damn disease hit.  Forget slowing me down, it flat out floored me.  Not only am I not can I not race, I can barely walk these days.  I am excited if I can do an hour in the pool, half walking/half swimming.  My sister and I took the money we had saved up for the road trip to the race and reinvested it into a dream vacation.  I am excited that this amazing trip is coming up, but the dark cloud of “failure” is hanging over my head.  I know in my brain I am not a failure, I am just dealing with a minor setback, but my heart isn’t feeling it that way. 

In preparation for our upcoming amazing trip, Kid’s Hair Salon opened up (with the color my sister and I like plus the length/thickness of our hair it would cost a fortune to have our hair done professionally).  Minions wanted their hair done too, sure not a problem.  I set up my room so I could be sitting while doing everyone’s hair.  Got my sister’s hair done (three tubes of color and 7.5 oz of developer – see big bucks!!!!)  and then she helped me with mine.  Today it was highlight day (I don’t like doing multiple steps in the same day).  I put the bleach in my sister’s hair, then minion #1’s head followed by minion #2.  I sat around and waited for my turn, well it seemed like my hair was not going to get done.  So I put on the highlighting cap and started pulling my hair through and finally minion #1 came in and started helping.  When it was time to mix the product he sat in the middle of my bed and RIPPED it opened and watched the bleach powder fly everywhere!  Mind you, he is not a kid, he is a teenager.  He had seen me mix two previous bowls of it.  Needless to say while it was being cleaned up (mostly by my sister) and threw a mini temper tantrum and declared that I refuse to do anyone’s hair unless mine got to be first and this was stupid and it was a waste and I didn’t want purple in my hair anyway and…  See it isn’t easy to live with an emotional lupie! 

On a positive note… I am a thief!  I know, that isn’t a positive note, I guess it would be better phrased that someone in my running community had a brilliant idea and I decided to copy it.  Fiona is a dragon who raises awareness for Leukemia and lymphoma.  She is a cute little dragon who really gets around.  My sister and I decided Luppie Adventures needed a mascot or two as well.  Ok, we have three.  Luppie is a cute little purple rhino who has a mani and pedi I would kill for!  And Lala (green dragon with purple wings) and Lulu (red dragon who roars) are dragons who like to run amuck with Luppie!  

 

Kid

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