Just Imagine!

Just Imagine living your life with the knowledge of your future.  What would you change? What would you keep the same ? Would you slow down a little? Would you eat differently if you knew for fact you would have a heart attack in the very near future? Would you put your seat belt on because you knew you would be in a accident on Wednesday?
  With my new health discoveries I would want to do things a little different.  .. I would ask doctor’s to look at me closer not just the number on my chart.  I would demand for them to do more tests. .. to listen to my words and hear how I’m feeling. How does a BMI determine how a doctor looks at you? If I don’t have high blood pressure, diabetes, high cholesterol… then wouldn’t that suggest that maybe they need to look a little closer?   I always knew something was wrong.  I always believed that I was trying the best I could to live healthier.  I could look at my body and tell something was wrong.  If we women are responsible for checking our breast for lumps,  keeping track of our cycles. .. then why not be just as much responsible for our bodies unusual design.  If we can have a mammogram… a pap smear, then why couldn’t we be more of a advocate for how our bodies store fat? If for a minute you can just imagine a doctor telling you that you have a disorder/a disease of your body that is not curable, that no matter how you eat, drink or even how much you exercise. … you will be FAT REGARDLESS…. Just imagine.  It’s no different than a cancer diagnosis. . Or life debilitating disease ,but for me this is not how society sees it. … this is not how insurance companies see it. .. they just see it as Fat is FAT!!!! IF you see a woman walk into a store with no hair on her head , society in general sees it as someone fighting a battle with cancer. Doctors see it as a this person fighting and hoping for a cure.

Now let me take you on a journey with me and just one of my days.  Just imagine waking up with pain so bad in your legs that you really don’t feel rested at all. Now imagine if you will that your body is aching and bruised and swollen. …. you just hurt because you are in toxin overload.  Now you have to get dressed but finding something to wear that covers you unsightly legs gets harder by the day. .. you manage to find dresses to wear because finding a pair of pants that cover your butt and legs, but still fit your waist is impossible. Now you’re dressed.  Let’s find shoes. … don’t think shoes are a problem. ..ha think again.  They are.  Your ankles are so swollen that you either wear crocs or flip flops because anything else just hurts too much. Now think about being hesitate about going out because you now have to face public scrutiny and judgement!  You see my disorder is not noticeable…I don’t have a bald head.  I don’t have scars. … I am not in a wheelchair.  I talk fine.  I get out of my car and walk in to my physical therapy. ..yes I said it. ….physical therapy.  Now I see everyone looking at me, see they are already quick to judge. But what can I say? I can’t tell them that I have Lipedema and Lymphedema.  I can’t say I didn’t choose to be this way. I just look down and wait to go to the back. 

Once in the back I get a massage to stimulate my lymphatic system.  It is often painful because my skin burns.  Then we celebrate if I have smaller measurements. … see no matter how small every little loss counts.  Then I get compression pumps on both my legs.  I lay down with these on my legs as they fill with air and again stimulate the lymphatic system to push the build up of fluids.  Mind you this is still not a cure, just a hope of keeping it a bay.

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Now you get to have you legs wrapped up. ..all the way to your knees. Because it helps.  No matter how painful it is, you do it because you want to feel better.  You want to walk. my biggest fear is being wheelchair bound. I refuse to get that far in this disease, so I do whatever I am asked. Every little thing, every vitamin, supplement… special stockings.. I walk with a cane to lesson the pain and to prevent more swelling.  To me this is a fight. It’s real and it affects me in many ways… I avoid going to stores because I know how people react to me.. and that is a very real hurt in itself. I want to educate them but aside from wearing a large sign on my back that says ” Please Don’t stare, I didn’t chose to be this way and I have a disorder that you can’t see”  ” Ask me about it and I will educate you”….  sometimes I get really angry. I mean I just want to walk up to people and say ” where is your compassion?”

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Now wear that until the next morning when you take them off only to take a shower then start all over again! Everyday you go for physical therapy as long as your insurance will continue to pay for it!
It doesn’t matter how much I cry. It doesn’t matter how angry I get. It doesn’t matter how hurt I feel . Because no matter how many people think that is not a big deal, no matter how many people see you as fat…. you still have to keep living because family and friends rely on you.  So I will cry. .. sometimes I will cry on my fiancee ‘ s shoulder ..and sometimes I will cry quietly by myself.

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But then I realize that even with this awful diagnosis,  even when I struggle with the pain , the cruelty of others I have a wonderful man who loves me. ..a great family and a wonderful network of friends. .. now just imagine if I didn’t have that.  No never mind.  Don’t.  Why would you?  I had this health issue for so many years that I am now at a stage 3. Yes there are stages, just like cancer. If I had been diagnosed sooner in my life… like around 20, I may have been able to live a lot healthier, pain free and would be a whole lot smaller than I am now, but no one noticed. The doctors never noticed.

Age 20

Age 20

I will smile. I will smile. I will SMILE!!! Why? Because like anything else I have been through, I chose not to let it define me.. it is not who I am, and I have always said that the person on the outside is most definitely not the person I am on the inside. I am still the go getter. I am still the one who wants speak for others like me, to speak to them all and say ” I am here with you.. I know how you feel, and together we can all make a difference”  I have survived so much already, I have been through so much this far  so maybe this is what I have been put on this earth for… to be the voice, or maybe just maybe this will reach that one person who also has this awful disorder and does not know it yet and they will learn from what I have wrote about and will get checked or see their doctor and have a chance to get it in check before stage 3.

Just imagine that for once you realize that this is not your fault. Go home hug your family a little tighter, be a little more thankful and live in the moment. That is what I am hoping to do….

As I continue to write this blog I will talk about things in the past, things I did that made this disease worse and more rapid… I will speak of what I am going through on a day to day basis… I will talk about now… the past and the future. This is my journey and I chose to share it with all of you.  If you learn anything from it then maybe I have helped in some way bring a little more awareness to all of you!

http://www.lipedema-simplified.org/

 

 

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4 thoughts on “Just Imagine!

  1. Love this , you are so awesome keep up the good writing . I can’t wait to read more . I know it has to be hard going through this but you are beautiful Inside and out hope all is well to you and johnny 5 and the kidos

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