Sunday, July 21, 2013

Getting Diagnosed


In 2004 I was diagnosed with Lipedema (actually primary Lipedema and because I had gone so long not being diagnosed properly, I also had secondary Lymphedema).  I was 35 at the time, and a few months prior to my diagnosis I had given birth to our only child, Noelle, via Cesarean section.  Basically Lipedema deals with fat and Lymphedema deals with fluid.

A nurse in the hospital during my recovery was the first medical professional to inquire about my legs. They were large and swollen, more so than was typical with pregnancy, and the questions she asked of me, I would later ask of my primary care physician.

I was familiar with asking my Doctor questions regarding my inability to loose weight.  For most of my life, even in my early 20's (when at my lowest adult weight), I would loose weight from the upper part of my body, but not from my hips and legs.  I continually asked her about weight loss, because I was extremely active and my physical appearance didn't match my efforts, but what I should have paid attention to was how I felt.

My gym routine was mainly cardio; typically elliptical for 45 minutes to an hour, then the treadmill for another similar time frame (even the bike on occasion to switch it up).  I would adjust the incline, speed it up, even walk backwards.  In addition to cardio, I did some resistance training on the universal weight machines, and took some boxing classes - although only a few, as it was right about the time I found out I was pregnant.  Prior to that I was spending my mornings before work at the local pool doing laps - I had always been a water baby growing up.  The picture I attempt to paint, is that I was very active.

I wasn't overly focused on nutrition, but I also wasn't an over eater.  I love good food, but I don't love to cook.  I would diet, being careful of consumption, typically of carbs, and recall being on the carbohydrate addicts diet with my husband, prior to our wedding.  My husband dropped 40 pounds quickly, myself about half that, and I recall my wedding dress seamstress being frustrated as I was loosing inches in my mid section, which was already drastically smaller than my hips.  We ended up creating a two piece gown to save her sanity.

The one constant was not "seeing" any result (seeing being the operative word).  My Doctor would see me at the gym, as she was also a member, and could see the effort I was putting forth.  My husband would not see me eating excessive amounts, and once stated "unless you are in the closet eating late at night, I don't understand why you are not losing weight."  His words rang loudly and I began to question what could be wrong.  My Doctor would test me for whatever we could think of (thyroid, kidney function, etc.) to try to find a reason why I was not seeing any weight loss.  I stress weight loss, because at the time I felt fantastic, I could do any activity that I wanted, but I kept gaining weight and noticing my legs looking more and more swollen.  She even had me on a diuretic during the summer months to help with the swelling, or so I thought.

After the birth of my child I noticed my legs were not only swollen, but looked deformed; no leg shape - no calf, no ankle, etc. just big, shapeless legs - like a column.  I asked my doctor about this, and of course she tested me for clots, and heart issues - typical post pregnancy exams.  It scared the hell out of my husband and I and whenever the results came back normal she was thrilled and sent me on my way, but we were stumped, if not X, Y, or Z, then what was it?

One stressful, no answers day, I went home and googled "big legs" and when I hit the image button I found some photos of women with legs like mine.  I was so grateful to have found a couple websites that had a name for what I had.  Lipedema.

My husband printed out the materials and together we went to see my doctor.  We left being told I should see a specialist, and I went back to trusty old google and found a physical therapist with lymphedema experience in Albany and made an appointment.  Within a matter of minutes, I was officially diagnosed with primary Lipedema and secondary Lymphedema.  I was told there was no cure but there were some things they could do to help, and information I would need to try to keep the symptoms at bay.

The first step was seeing a Lymphedema Therapist with knowledge of MLD (manual lymph drainage) and compression therapy (bandaging and garments), and while they had some trained Therapists in their facility, it was a 45 minute drive each way, and this would be a daily appointment to start.  Luckily they knew of another Lymphadema Therapist located about half the distance, in Clifton Park, who I began seeing.

MLD does not hurt, it is gentle, and actually so gentle I was pissed leaving the first few appointments.  How could something so light do anything to improve my legs?  But surprise, it did.  The bandages on the other hand were mentally challenging.  I would be wrapped from toes to groin, a long process after MLD, that would inevitably fall down as I walked to my car.  Frustration was killer, but I survived, and they were able to get a lot of fluid out of my legs (they began bandaging just the lower leg, which held up much better).

When my measurements showed there was little to no more reduction occurring, I was told they could do nothing further for me (stating there is no treatment for Lipedema), the next step would be to wear compression garments to try to keep the fluid from coming back.

My luck would show up once again, when one day I found there was a local person who specialized in Lymphedema.  I was her first patient and I still see her every 6 months; more actually, as she became more than my Therapist, she became a great friend.

Diagnosis is just the start, and a lot of people struggle to get diagnosed, mainly because most doctors don't know about the disease.  I hope with this blog to show my process and progress with Lipedema, but know each case is unique and just because something I do works for me, doesn't mean it will work for someone else - I just hope it can shed some light for someone, like those websites and blogs I found early on did for me.  I was so grateful that I wanted to return the favor, if I could.

6 comments:

  1. I am so interested in this blog!!! I simply can't wait for the next installment. It's not only because we are friends but because I have been in a position of "NO ONE KNOWS WHAT I HAVE". Please know that I travel with you my fiend.

    Margaret Zukowski

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    1. Thanks Margaret, your support means so much to me!

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  2. Well written Patti. Keep on posting.

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  3. May I know the Doctors name in clifton park.Pls.

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    1. It was not a Doctor's office, it was a Physical Therapist who I saw initially in Albany (St. Peter's), then in Clifton Park (Seton Health) and now in Saratoga Springs (www.ktpt.com). PTs are typically the ones who do the diagnosing. Here is the contact info for Seton Health (648 Plank Road, Suite 101 in Clifton Park, NY 12065; Ph: (518) 268-4800). If you have any other questions, please don't hesitate to ask.

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