4 years without you.

Grief is a strange beast. You can think you’re coping just fine until – BAM - grief just slams you in the face.

Today marks 4 years since cancer took my Aunt Donna from us, I’ll never forget that day as long as I live. I was 38 weeks pregnant with my boy, our hospital didn’t have any Obstetricians in the city that weekend, so I was under strict orders to minimize stress & do what I could to not go into labour. I remember the call to tell me that she went to the hospital, I remember wanting to go to be with her but everyone thought it was a bad idea because it would stress me out, I remember waiting for updates & then I remember my brother showing up at my door. The moment I opened the door & saw him standing there, I knew she was gone & nothing has been the same since.

I had Jamie 3 days later, so I couldn’t attend her funeral & 4 years later I still don’t feel like I’ve ever had any closure. There’s a pain deep in my soul that I ignore most of the time, I speak of her when others do, I laugh at stories of her life when I should, but sometimes when I’m alone & thinking about her, I just want to scream that it’s not fair that she was taken from us, it’s not fair that she had to suffer, it’s not fair that her children have to go on without her,  my father has to go on without his baby sister & my mother has to go on without her best friend. It’s not fair that she never got to meet my sweet boy, she was so excited for me my entire pregnancy & I was so sure she’d get to meet him, sadly I was wrong. My Dad told me that his grandmother told him that people need to leave this world in order to make room for others & I try to find comfort in thinking that Aunt Donna left so my boy would have a new place in this world.

I know most people think they have the best family members because they love those people, but Aunt Donna was different, she wasn’t just considered to be one of the best people I knew because she was my Aunt - I considered her one of the best people I knew because of how everyone else loved her too. I’ve never met anyone else like her in my life, she could make a complete stranger feel at ease & welcome in her presence. She was the most non-judgmental person who just saw people for their soul & not anything else. She loved my brother & I like we were her own, she made sure we always knew how much we were loved, that she would always be there for us, that she was a soft place to fall if we needed it.  

I keep hoping that the day will come when missing her isn’t so much a part of my life, when I can see something elephant related & not immediately think of her with sadness in my heart, although I fully believe I see signs from her in the form of random elephant references when I need her. I hope one day October 3^rd will just be a day where I remember her but that I don’t feel like I’m drowning in sadness.

I don’t know if I believe in Heaven, I don’t know if I’ll ever see her again or if our souls will be reunited, but I truly hope that someday I’ll have her take my face in both of her hands & give me the biggest kiss on the cheek again. I’d give almost anything to have that one more time & just to tell her how deeply I love her.  She was truly the best Aunt anyone could ask to have, there’s nothing more she could have done, she was pure love embodied in a 5 foot nothing frame, with a big laugh & bigger heart.

            I love & miss you so much.

 

Fat isn't a diagnosis

I've spent countless hours in the last few months scouring through websites, reading articles, chatting with women, and trying just to learn as much as I can about lipedema.

The one thing I found more than anything else is that so many women like myself are undiagnosed and can't get a diagnosis. This angers me. This makes me want to fix it. Just makes me want to shout from the rooftops that this disease is real and it's debilitating and we just want to be acknowledged.

I saw a doctor in September about my lipedema, or so I thought. This doctor took one look at me and immediately judged me based on the fact that I'm fat. He looked at my legs he told me that I have lymphedema with secondary lipedema - the problem is that is impossible. If he knew anything about lipedema he'd have known that plenty of patients develop lymphedema when they're in advanced stages of lipedema. Instead this vascular surgeon brought it upon himself to tell me that the pain in my legs wasn't from lipedema it must be something else and wanted to know if I had considered gastric bypass. If this man knew anything the gastric bypass and lipedema he would have known that often lipedema patients suffer depression after gastric bypass because they still can't lose the weight and their body looks more deformed now.

8 years ago when Katie was still just a baby I went through a period where I had severe knee pain, I saw an orthopedic surgeon who callously told me that if I didn't lose weight in the next 10 years I was going to need my knees replaced. He told me that my legs being the size they are is putting too much pressure on my knees so I really need to consider losing weight.

I'm tired of medical professionals seeing fat people just as fat instead of seeing us as people first. I'm tired of hearing stories of fat people embarrassed to go to the Doctor.  I'm tired of being diagnosed as fat, as if there could be nothing else wrong. As if being fat was a disease in itself & my insides aren't worth anything as long as my outside is fat.

I have a disease in my legs that I am going to have to tell Doctors about because they don't know what it is. 11% of women have this disease & Doctors don't know it exists. 11% of women suffer daily with burning, aching, weak, heavy & sometimes immobile legs. We have it in our arms, our abdomen, our hips, legs, buttocks. It hurts & it's exhausting.

The only way to really get rid of lipedema is Vaser or Wal liposuction, which isn't covered under any Medicare or health care plans. It's seen as a cosmetic procedure when it fact in many ways it's a life saving procedure. Women regain mobility, they no longer have pain, depression reduces, health improves as women become more mobile. None of those things sound cosmetic to me.

I've been trying to find a way to wrap my head around the exorbitant amount of money I'll need for surgery. When the day comes, and it will because I refuse to accept anything else, I'll need to travel. Most likely to Texas, since my top choice is in Germany & I'd need to stay in a hotel for 7-10 days following surgery, then fly home, Texas seems like a smarter choice. I just keep hoping that by the time I can afford surgery it'll be free & I can go on a fantastic trip instead.

I truly hope that lipedema become know for what it is. I want health care professionals to know how much this disease hurts those of us with it. I want the general public to know this is a disease and we aren't just obese. We have lipedema, aka painful fat disease, we didn't do this to ourselves & we are tired of being shamed.