Listening

This week has been all about listening.  Listening to my body, listening to the voices in my head, NOT listening to the gummy bears that are in the snack station in my basement that for the 1st two weeks were LITERALLY calling my name!

Something has changed this week.  I'm not hungry! My FB support group said this would happen but after a lifetime of consuming more food than one individual should consume and thinking that was normal - I didn't really buy it. Even others who I have talked to about doing this with me have said being hungry is one of their biggest concerns.  However, as I'm learning, my FBSG (easier than writing Facebook Support Group all the time) was right - again!  I love that!  Listening to my body tell me I'm not hungry and after only 5 chicken wings, I was FULL had me in actual disbelief.  5 chicken wings? That's ridiculous!  That's what those silly, super skinny women say [don't judge me], "Oh my God [I'm my best Valley Girl voice], I am SOOOO full! I had FIVE chicken wings!"[I know - why does someone who is skinny have to have a Valley Girl voice and in my head, be blonde and from California?  I'm bitter - I know].  My usual reaction would have been something along the lines of rolling my eyes and saying, "Yeah, SAME! I had 3 kernels of popcorn and I don't know if I'll be able to eat for the rest of the week!".  [Something that rhymes with the word itch would have probably followed under my breath, but I won't actually say it]. Now....in a way less snarky tone, I would genuinely say..."Hey, me too!".  It's CRAZY! Portion sizes always seemed absurd to me.  Girl scout cookie boxes are single serving size, right? *grin*

Who eats like that? Oh yeah, I do now! It's pretty cool but trying to convince my head that it's real is a whole other story.  I WAS full after the 5 chicken wings but they were SOOO yummy (just plain fried chicken wings with salt and pepper) that I pushed another 2 in.  Mistake, I know.  I need to LISTEN to my body and believe what it is saying to me and ignore the voice in my head that has been programmed for years to use food for what I want, not what I need. It keeps telling me, "It's not possible you are really full!  Keep going!" Food has always been comforting, it's social, it's experiences and status and accomplishment.  Something I always thought was part of my need to control was actually controlling me.

So head, listen up.  This is your body speaking.  We really need to work together if this thing is going to work out for us both.  You've been on cruise control for a long time now but we really need you to stand up and take charge because we can't win this without you. We, your collective body parts, will continue to give you positive feedback but you need to keep working and keep driving this bus.  We're counting on you and we believe in you.  You've got this!

Yes, I've got this. I'm listening.

And So It Begins

March 2, 2018

So today it begins.  12 days ago, I restarted my life and I thought the best way to get it to stay restarted is to "talk" it out.  I'm a writer at heart and rather than blab to a friend or family member (which I still do) who will eventually have their own stuff to do, I'm going to talk to myself and document my journey - the good, the bad and the oh so ugly.  If you read this and it inspires you in some way... well, that's a bonus for us both!  Buckle in - as this is the first post and there is a lot I need to catch up on (well, I already know all of this but if you have stopped by to read this blog, you need to be caught up!) and it's a bit lengthy!  I don't intend on making all my posts this long :) (see disclaimer: "intend").

Let me start at the beginning - well, sort of the beginning....whatever, let me just start.  I have a disease called Lipo-Lymphedema Stage 4 (check out www.lipedemaproject.org for more information on this if you really want details).  I was diagnosed with Lymphedema years ago after I fell at a business conference and my ankle developed some abnormal swelling that never went away (I just assumed the injury never healed properly).  That swelling travelled up my right leg, to my abdomen and then down my left leg.  My abdomen is severely distorted with the right side significantly larger than the left.  All of this AND I weigh over 450 lbs.  I can't even bring myself to write the actual number because.... well, I just can't.  Writing that was bad enough but I'm committed to documenting this journey, my life, honestly.  I know it, my doctors know it, and God knows it.  That's more people than I'm already comfortable with having this information.  A year ago I saw a Lymphedema specialist and she told me Lipedema was my primary disease with Lymphedema being secondary and that most likely, I have had Lipedema my whole life and <wait for it> it is currently ..... INCURABLE.  Fantastic! Saying I was overwhelmed was an understatement.  I left her office with a plan to change my diet and then investigate next steps with her when I returned in 6 weeks.  Needless to say, I didn't go back. I just wasn't ready to mentally make the commitment to change my life. I believe I am now ready.

Fast forward to about a month ago.  I was in a pretty severe spiral.  My mobility was getting worse and worse, I never felt good, things just "hurt”, and I was tired all the time.  I was working myself into a nice state of depression, and I was really starting to convince myself that my family and I would be better off if I wasn't around.  I knew I would never really do anything because I just couldn't do that to my family - I couldn't put them through ANOTHER funeral.  My kids only have 1 parent as it is (their Dad isn't dead, just 100% absent) and my mother has already buried 2 children (no one should EVER have to do this - more on this at another time).  I just couldn't do that to them - not to mention - religiously this didn't fly.  How could I give up on God's plan for me? Wasn't all of this just a test to see how I would handle my life and what would I do with the millions of blessings I already had.  So yes, very depressed but only suicidal in my head.  I just wanted things to be DIFFERENT! 

So, one day, when I'd called out of work sick because I was just achy all over and just really tired, my niece and her girls stopped by.  I was in bed and they all came to see me and say hello.  The girls kissed me and chatted for a bit and the little one snuggled with me because, as she said, "Snuggling is her talent" (geez they are cute!)! My niece wanted to know what was wrong with me and when I started to tell her, she got frustrated.  "You know how you get mad at us when we don't go to the doctor or take care of ourselves? Yeah, same for you! Make an appointment with my doctor [autoimmune] and go figure out what's wrong!".  Just this little push was enough.  I scheduled appointments with the Endocrinologist she sees, my PCP, and the Lymphedema doctor I had seen last year.  I started with Dr.LeBlanc, the Lymphedema doctor, because I knew the Lipedema was the root of most of my problems.

Once she got done giving me some grief for never returning after my appointment a year ago, she asked what was going on and what was I honestly willing to commit to.  Oh, and by the way, she was moving to Baltimore so after this visit, I was left to the devices of the doctors she was going to recommend which wouldn't necessarily have much Lipedema knowledge because it is still massively misunderstood in the medical community and grossly understudied (it is currently estimated that 11% of women in the US suffer from this disease)!  This is starting to change, but not very quickly.  We chatted and she brought up living a Ketogenic lifestyle with me.  We had discussed this last year and I had started to do it for a few months with some real success, then life and my head got in the way and I got derailed.  I was ready to try again and she gave me information via a number of websites (www.ketovangelist.com and www.lipedemaproject.org) and suggested I join a number of support groups via FB.  She also said I should talk to Katrina Harris about coaching because she has/is lived/living with and through Lipedema and lives a Ketogenic Lifestyle ("Keto").  She told me to make an appointment with a plastic surgeon to discuss a Panniculectomy (https://www.plasticsurgery.org/reconstructive-procedures/panniculectomy), to visit physical therapy, to speak to a nutritionist and to keep my Endo and PCP appointments.  Have I mentioned I NEVER go to the doctor and pretty much avoid it at all cost??  Now, I had an entire folder of follow up appointments and more information than I thought I could absorb.  But, I read all of it and made every appointment.

I went home and immediately looked into the FB support groups.  I ordered Keto books from Amazon and went through the suggested websites.  I made the additional doctors’ appointments like it was my job.  That was on 2/12. On 2/13, I saw my PCP and could not believe how much weight I had gained since my last visit not to mention I had gained 5 lbs. since the DAY BEFORE!  When I had tried Keto a year ago, I had lost nearly 30 lbs. in a pretty short span of time.  Well, I had gained that back PLUS! I was horrified. My PCP, Dr.Richardson, is amazing though.  She's been our family doctor for over 10 years. She knows me, the kids, my Mom - all of us - and is very respectful of our lifestyle and how I like to manage our health from as natural a standpoint as possible.  She knows I'm not big into medications and am not playing around when it comes to my children. I told her about my appointment with Dr.LeBlanc and she remembered me talking about this before.  She admitted she couldn't really recommend anyone to me or help me herself because she didn't know much about Lipedema but that she would support me anyway she could and that she thought I should give Keto a try.  We agreed that I would take a bunch of blood tests, get a mammogram (unrelated but overdue!) and then come back in 6 weeks to see how I was doing.  She talked to me for over an hour.  I love Dr.Richardson <3

The following Monday I met with Nutritionist Nicole #1.  I know that sounds strange, but you will understand in a minute.  She was good but admittedly, didn't know much about Keto and had never worked with a Lipedema patient.  However, she said she would introduce me to Nutritionist Nicole #2 (I never meet anyone named Nicole, and now, there were 2 who worked in the same place! Crazy!) who was already working with some Lipedema patients who found success with Keto.  I was thrilled!  The 3 of us (yes, three Nicoles on 1 conference call! So funny!) had a call a few days later and I could not have been happier to connect with Nicole #2.  She was great.  Our personalities clicked, and she knew a lot about what I was going through.  She was encouraging, gave me some great ideas and we are scheduled to talk again in about a week.  

The next add on to this team I'm building is Jane the PT (physical therapist).  PTJane was FANTASTIC.  She has been working with Lymphedema patients for 35 years and has struggled with her weight her whole life (she is a Weight Watchers member for 50 years!). I almost cancelled the appointment because I knew I wasn't ready to deal with compression wraps or garments or exercise but I just kept hearing Dr.LeBlanc say, "Keep the appointments" and I went.  I am sooooo glad I did!  She was extremely knowledgeable about Lipedema and Lymphedema and I know as I go through this journey, she is going to be a great support for me.  She agreed with me that it wasn't time to start any type of PT but we decided to meet again in a month to see how I was progressing with Keto and then reassess.  She took pictures of my lower body and I asked her to send them to me.  Looking at those pictures was REALLY difficult for me.  The only mirror I look in EVER is a bathroom mirror and it's only from the waist up.  Of course, I have some idea of what I look like but those pictures.... wow. I'm working very hard not to dwell on them and just keep telling myself that in a year, I'm not going to look like that so why focus on them. Still....even now, they haunt me a bit.

So as of today, this is where I'm at.  I have the plastic surgeon visit on Wednesday, I need to get my blood work done and that God forsaken mammogram and the Endo appointment is in April (yes - APRIL! She was THAT booked up!).  Keto is consuming my thoughts because I really want to do this RIGHT.  I'm so thankful I've joined the FB support groups.  They are amazing.  Everything I'm going through or have a question about, someone else is either asking and getting great responses or people have lots of helpful suggestions.  I'm trying not to make myself nuts, but I am tracking everything I eat and counting my carbs, protein, and fats (for the most part).  My hunger has decreased tremendously, my portions to satiety are much smaller, I'm sleeping better and honestly, I feel like my mobility has improved!  Someone even told me I was "looking good" in that way that you know they mean, "you lost weight!" but are too polite to say.  It made my day even though I'm thinking it might just be because I was wearing my hair up that day! LOL!  Who knows... either way, it was encouraging.

I'm sorry for this crazy long post.  Like I said, if you really want to follow the story, you needed to be caught up for the rest to make sense.  I plan to post once a week so check back on Saturdays for updates.

And so it begins.....