A Brand New Start : Part 2

After much begging and pleading with my doctor to help me with the enormous amount of pain and swelling in my legs, I went to see someone at the Lymphedema clinic at the hospital. It was a long time coming. I asked my primary care physician (PCP) to send me years ago, and she felt there was no need and dismissed it. All the while my legs kept getting bigger and I grew steadily more depressed. With having two herniated discs in my back, migraines almost daily (they have slowed somewhat with a couple changes in medications, but they are still very much part of my life)and the pain from the increasingly swollen legs, I was absolutely miserable. I am stubborn and try very hard NOT to take medication for pain. When I do take medication, I feel as though the pain has won, and I have lost the battle of that specific day. I fear becoming dependent on the medication, I want to be pain AND medication free. That doesn't seem like a lot to ask for, and yet it is a fight sometimes to get someone to listen to me. My family listens but cannot do much. Doctors well, they are great, but sometimes with them being so busy, they can lose their naturally empathetic nature and just see me as just another complainer.

Finally the straw that finally broke the camels back, is when the Active Living Clinic (for weight loss and better nutrition) refused to believe me that I have been following their plan, basically it was Canada's Food Guide. OK, so I slipped occasionally. Don't we all! But for the most part, I had no appetite anymore,and I really tried. I also complained to them about my 'growing' legs. Despite losing weight in my arms and upper torso, my legs were gaining and the scale just kept creeping up. I measured them and could feel the increasing pressure in the lower legs. The physio therapist stated I have lymphedema and need it treated and have my legs wrapped. This was the first I heard about this disorder, and from there that began my search for my health. The endocrinologist told me there was nothing further he could do with regards to my weight and that I would have to "fix my issues mentally, before I could proceed further". AHHHH Yes...the old "It's in your head, we don't know how to fix you, and you are so not worth my time" Been there many times before, and I heard it again. Here we go again! Me crying in another doctors office, begging for help, and they tell me I am a lost cause. I wanted to die. I am not suicidal, not at all. I just didn't want to live anymore, I would never terminate my life, but I did wish I were dead. The dietitian came in and stared me down and pretty much called me a liar without using those exact words. She said if I was doing everything right I would be losing weight. I must not be doing it right and she had no further advise for me either. Needless the say the three 'professionals' listed above were all from the 'Active Living Clinic' The only one of any use was the physio therapist who saw that my legs were NOT NORMAL.

Back to my primary care physician (PCP), The first time I requested to see someone about the lymphedema, she turned me down, after doing more and more research online, I concluded I did have lymphedema, as most every person's legs looked like mine and we all shared a similar issue with doctors and dietitians telling us to lose weight, and no success. I also read up on Lipedema to a smaller degree. I will elaborate more as my posts go on.

I went back to my PCP and this time, I did not ask for a referral, I TOLD her I wanted a referral. She agreed to an assessment in the lymphedema clinic. She told me to call and provided the number for the clinic. I called and asked if they received my referral, no they had not. I called my PCP's office and could not get through for days. Finally I asked my husband to go and see them and request a copy of the referral be resent. The secretary acted confused,and booked an appointment for me with my PCP. I went to the appointment and asked again about the referral, she stated she would send it along shortly. I left and about a week later called the lymphedema clinic about this referral, they still had not received it, this happened two more times, with the PCPs office and referral, to the call to Lymphedema clinic. Finally the lymphedema clinic advised that if my PCP could write up a quick note I would be able to walk the referral in and that may be faster. I did just that. I went to see my PCP which, by the way, was about 10 months since I requested the referral. I took the referral right up to the clinic and handed it to them personally. Within a week, I had my appointment for the assessment. I was diagnosed with Lipedema and secondary Lymphedema. I will do separate posts to differentiate between the two and to highlight some profound information, that was a positive turn around for me.

Therapy starts tomorrow. It includes Manual Lymph draining (massage technique) wrapping my legs to reduce them, and then eventually graduating to support stockings. This is a life long disorders, I will have to maintain the care of these legs to prevent them from swelling again.

I will be posting pictures of my legs now...and as treatment goes along, hopefully some impressive pictures of results. :o)