Tuesday, March 10, 2015

Winning at Life Sometimes Looks Like Not Losing

I have been epically remiss in keeping this blog updated.  My life has hit several snags in the last year that made it difficult for me to keep the blog a priority but it has occurred to me that blogging may be the best way for me to work through things.  Let me share a story that has little to do with motorcycles on the surface but everything to do with my riding life.

Recently I did a review of the Sidi Doha boot and posted pictures of my foot in the boot.  I also shared pictures of my foot in this post. Did you look at those pictures and say  “Geez Sidecar Adventures you have a hideous amount of edema.  That can’t be normal and that can’t feel comfortable.”  I would have told you yes, I have edema because I’m fat.  My doctor has seen it and assures me it’s water from my weight.  It’s not painful, don’t worry about it.  Well, you would have right and I (and my doctor) would have been wrong.  The back story of this is a story for another post another day.  Through a series of fortunate events I became convinced finally that the edema in my legs was Not Normal and I should get that looked at.  I had tentatively come to the conclusion that I might have a condition called Lipedema.  I’ll let you Google that if you want but its a little known and difficult to treat condition that many doctors don’t believe in.  I found a clinic that I thought could treat it but I needed a referral from my Doctor to go.  So right after the first of the year I found myself in my Doctors office.  The visit did not go well.  She was dismissive sticking with her opinion that I needed to lose weight and the swelling was from being fat and putting stress on my blood vessels.  She had never heard of Lipedema and was very dismissive of my explanation.   I bullied her until I got the referral for the clinic.  Her last words to me were that even if they do all the bandaging to get my legs down, the swelling would just come back unless I lost weight.  Those will be that last words I hear from her because I’m not going back.  I got a call that day from the clinic and found myself sitting in the Specialist’s office the next week.

After speaking with me at length, the specialist touched my feet and legs gently and then softly pinched the skin above one of my toes.  “You have Lymphedema”.  He went on to talk about getting me into therapy with the physical therapist and to very gently, professionally and appropriately talk about the importance of losing weight in order to manage this condition.  I heard maybe one word in ten.  All I heard was Lymphedema.  That was not the diagnosis I was expecting.  Not what I was prepared for.  I knew what that was.  A good friend of mine has that and I’ve watched her manage the condition.  It’s a commitment.  It’s like suddenly becoming poly and your third partner’s name is Lymphedema.  I numbly made my physical therapy appointment then sat in my car and cried for about an hour.  I have no idea why I couldn’t stop except that I had been crying since the event that made me realize something was wrong.  I cried because the Specialist mentioned my weight (very appropriately and gently).  I cried because a diagnosis of Lipedema would have meant no effective treatment but it wasn’t my fault that I couldn’t lose weight.  Lymphedema was in many ways a more positive diagnosis.  It had a course of treatment that was effective but that meant that my inability to lose weight was again all my fault (it’s not but that’s where my head was).  I cried with relief because I was right and my Primary Doctor was wrong.  I cried because I knew it meant the end of the 20 year relationship I had with my Primary Doctor.  I cried because I was afraid of the unknown.  Afraid the therapy wouldn’t work.  Afraid it would and I would have to face the fact that I had let my legs degrade when I could have fixed this years ago.  I just cried.

I was in Complete Decongestive Therapy for about a month.  A month of having both legs bandaged to the knee and being in post-operative shoes because they were the only things that would fit my big bandaged feet.  A month off the bike because I lost all range of motion in my ankle and my feet wouldn’t fit in boots.  A month of missing a lot of work.  A month of learning and talking things over with Mr Man.  How would this impact our riding life?  My mileage?  My ability to off road?  Lots of questions and no answers.  I still have no answers except that we’ll find out when we get there.  I’ve been able to draw up a couple of game plans.  My life has changed in some ways and some ways not at all.  I no longer have to wear bandages every day but I’ve still got them in case of a flare up.  I wear compression garments to my knees every day now.  I have two pair, one off the rack and one custom made.  I have to wash them every night so I alternate.  I wear night garments when I sleep that look like oven mitts with stretchy covers.  They are comfortable but bulky.  Every night I use a compression pump on my legs.  During the week we do my lower legs only for 30 minutes each leg.  They must be done one at a time so that’s an hour.  On the weekends when we can we do one entire leg and my core in the morning and one entire leg and my core in the evening.  That is a little over an hour each leg.  I also perform Manual Lymphatic Drainage on myself every evening and in the morning when I remember.  I take every opportunity to sit down and get my feet up that I can.  I now have to make sure I keep my skin moisturized and healthy BUT I can’t put lotion on right before my stockings, my night garments, or the wraps for the pump.  So I have to work that in as well.  Lymphedema is my new life partner and we have a love hate relationship.  

So how will this impact my riding?  I only know a few things right now.  I know that I will continue to ride just as far and fast as I can.  I will keep going off road because to stop would be to admit defeat.  I do understand that because I have a whole bunch of new things I’m doing to manage the swelling in my legs, I’ll need to factor that time into my day on the road because managing my legs on the road will be paramount.  So I may not be able to ride as long in order to get in and care for my legs.  I’ll need to watch the heat and I’ll need to make sure I’m hydrated.  But I’m still going to ride.  In fact I took my first ride just a few weeks ago.  It was heaven.  Here’s what I found: 1.  Because the lymph is flowing better through my body, my stomach has lost all of its hardness and my jacket suddenly fits me again.  2.  My boots fit me better and help keep the swelling down.  So riding is a little easier.  I’ve lost about 4 or so inches off my lower legs so a lot of bulk is gone and that equals easier movement.  Also, I’ve lost 10 pounds of fluid in one month.  I feel so much better overall and that will help my riding.  The random shooting pains in my legs are less and the pain in my hips is gone, again, that will help my riding.

In the end, I think this is a tradeoff.  As my trainer has pointed out to me, the lymphedema is nothing new.  I’ve had it.  Now I’m learning how to manage it.  I may have to shave off some miles so I make sure I have time to care for my legs in the evening but the tradeoff of feeling better on the bike and in my gear is worth a lot more than the price of a few hours on the road.