so. it's official, I have lipedema..

About three weeks ago I finally got into a place that took some measurements and looked at me and pronounced, "I guess you could have it" *headdesk*   I was thoroughly confused and totally wishing for a more definitive "yes"  I was then set up for six appointments of MLD (manual lymph drainage massage) and sadly nothing more was really explained to me.  I was told I could buy the book (the one put out by dr. herbist) which has been out for a while but they haven't bothered to fully read. I was told I could buy leggings with 10%+ lycra for compression, and a dry brush.. if I wanted.. whatever..

talk about underwhelming.

If there was anywhere else to go, I would so be there.

MLD was underwhelming. It was nice, don't get me wrong, but it wasn't like I lost 50lbs and gained all kinds of energy.  after five sessions I lost a centimeter in most places they measure.  Considering this is the first loss I've had in over three years.. to me this is something.

I've been left alone for a week to see how I do on my own. I'm not amused. Not sure what I expect, but this lack of enthusiasm is underwhelming.

I did have one of my lower legs wrapped to see if they could drive out more fluid.. not really... and boy was it a pain.  Most of my issue is in my upper limbs, though, so it would be nice if there was something for that.

I bought some compression garments for my upper arms a few years ago when i was trying out laser fat loss (which was a big fat waste of time) so I've been wearing those.


Surprisingly, I haven't really told anyone. A few friends and my boss who needs to know why I'm not at work when I am having my MLD (because of course there is nowhere close to me and nowhere that does it 'after hours') and that's it.  Before the diagnosis I thought I would shout it from the rooftops, "look at me, there is a reason I'm like this, and it is NOT because I'm lazy and overeat!!"  But now that the diagnosis is here, I'm annoyed that I feel the need to justify why I'm overweight. If I am overweight because I eat too much or because I have a medical issue, it should not matter. I shouldn't be marginalized by society because I take up more room than most people.

I'm sure I'll get around to talking about it. this post is my first step in that journey.. but right now I'm choosing not to.. mostly because i do not want to sit around answering questions.. I don't have nearly enough people energy for that at the moment.. #introvertmuch?

I am so freakin tired

It's been almost two months since my last post and I've given up on the 'new' doctor and am trying to get into somewhere else.  A woman I work with loves her doctor so I gave her a call this morning only to find she isn't accepting patients.

I had an emotional breakdown on the phone.  I felt horrid for it, but the poor woman who had the misfortune to answer the phone was very kind.  I did my best to explain why I was sobbing on the phone with her, and she felt bad for me and sounded like she wanted to help me. If she is half as helpful as she sounded when I was sobbing on her virtual shoulder, then I will have hope..


but right now, I've got nothing.

After the call I just gave up and went back to bed and sobbed like a fool for ten minutes. I finally was able to pull myself together and get back to the process of going to work.. but all day I've been on the verge of tears and seriously I just want to scream.

I seriously don't care how things progress at this point, I just want some progress.  I want to talk to someone who knows something and who is willing to listen to me. I want to get beyond "I've never heard of that" SO FREAKIN LEARN!!!

the reason I'm calling a new dr is because I forced the issue with the old one, and finally they said they referred me to an endocrinologist.  I waited and waited for the referral to come through, and nothing.  I called back and found out that the endo didn't think they could help me, so instead of calling be to let me know and trying to find someone else to help me, they just let it drop.

I spoke to the practice manager who was 'very sorry' that this happened and was unhappy this was my experience, then didn't bother to follow through.  The third phone call I made I ended up in tears, and still no call, no help, nothing.  as soon as I find a new doctor I am so leaving them horrid reviews everywhere I can.

If I do have Lipedema, having a diagnosis isn't really going to change a lot for me.. there are things that can be done for it, wrapping of my limbs to help the lymph system, manual lymph drainage - aka massage - compression clothing.. some supplements to help with circulation.. and maybe eventually some liposuction. but having a reason why I am the way I am, and why things are so hard.. it would make all the difference in my head.. because right now - no matter how much I try to tell myself otherwise - my being overweight feels like it is all my fault.

I am just so tired

I am so very tired. I feel like I am being beaten down at every turn and I am so sick and tired of getting back up again only to know that I am going to be beaten down again.  I want to give up.  I just want to lay here for a bit, and not move.  put a blanket over me and call me done.

maybe throw a bit of chocolate under that blanket.  maybe a kitten..

So since first found out about lipedema and I decided I wanted a doctor to tell me more about it. To that end, I have..

Called my doctor to make an appointment to talk about it (and have my annual)

• doctor knew nothing about it when I walked in the door, was a bit dismissive of me until I told her it was originally diagnosed in the 40s and is recognized by the mayo clinic.  Even the student doctor knew nothing about it.  both promised to look into it and get back to me.

Called my doctor again and asked for a referral to someone who could talk to me about lipedema

• received a phone call back asking for more information - which pissed me off

Wrote my doctor a letter BEGGING for a referral

• never heard back - months later I learned my doctor closed shop and disappeared (along with my records)

found new doctor

• doctor didn't take my insurance yet, waited three months for her to be approved by insurance
• called back doctor every month to make sure they didn't forget to call me back
• month three - doctor moved out of town *headdesk*

Found new doctor

• this time I wanted to ensure I found a dr who at least KNEW of the condition. Against my own instincts, I made ten phone calls (I HATE talking on the phone) and went backwards, from someone who I know does lipedema treatment, looking for a doctor that might have referred to her, to which she couldn't help me, but referred me to a treatment center nearer to me, blah blah blah, 10 phone calls later I have a new doctor
• doctor can't see me for two months
• nurse practitioner can see me in a month - fine.. tell NP that I want to talk about Lipedema.

Have doctor appointment

• what's lipedema?
• oh, that?.. well the doctor that knows anything about that is off this week, but we'll have a conversation and we'll get back to you

two weeks later..

Excuse me while I sit and cry in the corner for a minute.. because this entire time society is telling me hourly that my fat is my fault.. that I suck, that I eat too much, that I eat too many sweets, that I'm too lazy, that I'm to blame..  (not to mention I've put on another 10lbs)

Okay, fine.  so now I have to make another fucking phone call  Why oh why is this so fucking difficult??

when you hear stories of people taking years to get a diagnosis.. This is why.