How To Go On When You Lose a Huge Part of Your Support System

On July 2, 2013, my sister, Diana, was admitted to the hospital and over 2 weeks later on July 18th her husband reluctantly took her off life support. They said she had contracted a virus but they could not find one in her system.  Her body just went into overdrive and started to attack all her organs until there was nothing they could do.  She had type 1 diabetes but was probably one of the healthiest people I have ever known.

In the middle of those long couple of weeks she bounced back right before I had to go on a business trip.  She was not talking at first though she should have been able to. She was in and out of awareness and was able to use hand gestures to communicate.  She was always an expressive person just like my grandmother was and also just like I am. 

When I was standing by her and telling her that I was going to Austin for a couple of days but I'd be back to see her, she grabbed my hand.  With her other hand she pointed at me and shook it back and forth as if telling me no.

I knew what she meant.  She never liked me traveling and she thought I worked too much.  This came from a woman who worked over 80 hours every week at the physical therapy business she co-owned. On top of that, she did countless charity runs, golf tournaments and bike rides.  She also found time to visit family and friends.  She definitely put Superwoman to shame with all she did.

I told her she was being ridiculous worrying about me as she laid there fighting for her life but that was my sister.  She always was the big sister and worried about me. At this point we all thought she would pull through so I went on that trip.

I did actually get to talk to her one more time face to face when I got back from Austin.  She was snarky with me (sarcasm is a huge part of how my family communicates) and was telling everyone she was going back to work in a few days.  We all just shook our heads knowing nothing we could say would stop her.

The day after, I got what we thought was poison ivy (it took 8 months later for me to find out it was a reaction in my mast-cells and not poison ivy) and I was not allowed to visit her in the ICU because of they were afraid she would catch it and she did not need another thing for her body to fight.  The next day, I texted her a picture of my bloated face and told her to cheer up because I looked much worse then she did at that point.  She texted back and said that I looked miserable and she didn't want to talk to me but I should go jump in the pool.  That was the last communication I had with her while she was alive.

The day after that text she got a liver biopsy and then slipped into a coma.  Two days later everyone met at the hospital.  There was a lot of people there at least 30 or so just waiting for news.  I was still not allowed to see her and I cried as I watched everyone else go in and get a chance to stand by her.

Later that evening as everyone but her husband and my other sister departed, they let me in to see her.  I knew in the back of my mind the reason I was allowed in.  I knew it was the end but did not want to admit it.  I still tried to cheer her on with my other sister, Elizabeth, and her husband, Bobby, looking at me like I was a crazy woman.  Not that those looks were something new.

After 1AM I drove the 25 miles home and first begged for help and then cursed out every person in my life that had passed on.  I wanted that miracle.  I never wanted something so bad in my life.

The next morning my sister called me and Bobby had made the decision.  Diana would not want to live her life as a vegetable and it was time to pull the plug but he was waiting for me and my parents to get there.

My heart broke that day in a way that will never be fix.

Diana was not only my sister, best friend, confidant and sometimes my co-conspirator but she had been the one person by my side the whole time I was trying to figure out what was wrong with me.  She was the first call I made after finding the information on Dercum's.  She was the first person in my life that actually read up on Dercum's and helped me figure out a plan of action.  She was the person I called after every frustrating doctors appointment and when some new weird symptom popped up. 

Though I know she is still here with me (I feel her almost everyday) I miss her tremendously.  I don't think I'll ever have the same connection to another living soul that I had with her.  Don't get me wrong, I still have some extremely supportive people in my life such as my parents, my aunt, my other sister and, the most important, my husband, Phil.

There are still at the very least three times a day that I want to pick up the phone and ask Diana advice, tell her what's going on or just bitch about everything and anything.  Now because she is not there for me to talk to almost everything I do, I think about what she would say or the advice she might give and that is how I go on without her.   

What Lumpy Louise Means to Me

If you are reading this and do not know who or what Lumpy Louise is, please see her site here:

Click picture to go to Lumpy Louise's website

Lumpy Louise was created by me just about a week ago but, honestly, she has been a part of me for a while now. I use her to tell the story of my life with Dercum's in a way that people seem to gravitate to.  Come on, who amongst us does not like a good chuckle now and then? Plus the fact that I am gearing that laughter at myself is priceless.  I've always made quite the clown and enjoy doing so.

Louise showing us her guns

However, she and I don't just share a disease, Louise just happens to be my middle name.  I didn't like that name very much growing up, it was such an old fashioned name. My sisters middle names both came from my mom, Anne (being my mom's first name)  and Marie (mom's middle name) but I did not know where Louise came from and it seemed like just another cruel joke played on me.  That joke was fueled one Thanksgiving when my aunt and uncle decided to tell me that I was named after Crazy Aunt Louise.  They made up some lovely stories about her, such as on Sundays she would put on 7 dresses and take one off every day of the week and then start all over again.  Well, that was just another Thanksgiving that I ended up in my room refusing to talk to anyone.

Then one day, while watching General Hospital sometime in the early 80's (think Luke and Laura time) a teenaged character named Lou came on. Not that she was a great role model or anything (I think she might have been a drug addict) but I thought Lou was the coolest name ever. I tried my darnedest to change my name to Louise at that point but sadly, as most of my endeavors in life, it never took.

So, Lumpy Louise serves two purposes for me. She keeps alive my hope of 30 years to have people refer to me as Lou and she lets me use my humor to tell people what it is like to live with a debilitating disease.

Louise and I very much hope that she does spread awareness and thank you very much for your continued support.

Why I Tried and Keep Doing Oil Pulling

If you have not seen or read about oil pulling yet, you must have not been anywhere near a computer in the last year.  It is everywhere nowadays even though it dates back to the ancient Ayurvedic peoples. I could get into the hows and whys but why waste my blog space when I can just direct you to another of the million sites that have that all written down for me?  (See the Food Matters link below.)

With Dercum's and the various other ailments I know about and possibly others I have no clue about yet, I have had a toothache for over 4 years in a place I could not have a toothache. How do I know this?  Well, because I have no tooth there anymore because it was removed the same 4 years ago. I also have from that spot going up through the temple of the left side of my face a tingling numbness and, at times, sharp pain. 

Just over a month ago I read about oil pulling and I figured it could not hurt to try.  In fact, I am pulling away as I am typing this. 

I pull almost every morning.  I figure since this disease has basically made me not to want to do any sort of beauty ritual in the morning adding in the 15-20 minutes I need to do this could definitely be fit in.  Plus I do it while watching the television or reading through Facebook posts so it doesn't seem like that long at all.

There are so many other claims that come with this magical ritual but I do not put heed to many of them.  I will agree that I am getting rid of a lot of unwanted bacteria by performing oil pulling and in doing so within days I reaped some benefits.

I will tell you, I do not have the phantom tooth pain and most of the numbness has gone away for me.  Also, a cavity that has been bugging me in another tooth has not given me much issue as of late either.  My dry lips and mouth have benefited too.  They stay nice and hydrated through the day.

So, is oil pulling the mystical cure some people are touting?  Maybe not but it is definitely worth a try if you have some random dental issues...and who among us doesn't?

http://www.foodmatters.tv/articles-1/oil-pulling-the-habit-that-can-transform-your-health

Getting Back To The Blog

So, I have not kept up with this blog.  I know.  I have been bad but work and personal crap got in the way.  Now I am writing a new chapter in my life and I want to get back to sharing my story about my fight with this awful disease.

It isn't a fair fight.  I feel I take a step forward and I get knocked down so fast it drains me of all the energy I have but I keep getting up and trying to take another step forward and that is what matters.

Work was killing me.  I am on leave and I am not sure if I'll make it back.  The stress was sending my Dercum's amongst other ailments in a tailspin.  This last year was bad all around.  That is a whole other post though. 

Today I start new.  I am up and though I know the fall may come I am not going to let it stop me.  Just watch me go!

Just Some of My Symptoms Amongst Other Stuff

So, not sure if I did this out of boredom or insanity but this is a list of just a few of the things associated with Dercum's. I was telling someone what I was doing and they asked me if many children get Dercum's.  I laughed realizing that my graphics seem they are geared towards kids but if I learned anything from social networking, the cuter the more people like it no matter what age. Enjoy!

 



My Top 5 Finds So Far

One of the reasons I resisted going organic for so long was I really did not think there was food out there that I could and/or would eat (I cannot eat many raw veggies as I do not digest them well) but there are plenty of great options and the food for the most part tastes better so I am not feeling like I am missing anything.

Here are just a few of the items I have found to get me over my cravings (in no particular order):

Trader Joe's Organic Popcorn with Olive Oil

You will not even miss the butter and it is 130 calories for 2 cups.  I have been having this for a snack at night at least 3 times a week.

Amy's Tamale Verde Cheese

I do like Mexican cuisine so it is not too hard for me selecting an Amy's frozen meal but this one is my favorite and though the rice side is spicy (for those of you who do not like spice) the Tamale is sweet and savory.

Cascadian Farms Chocolate Chip Granola Bars

These are chewy and very satisfying.  If I am on the go, I'll eat them as a snack or even as part of my breakfast with a fruit.  I have one of these on me at all times now and not just in the Chocolate Chip flavor.  I really like the peanut butter ones as well and have more to try.

Organic Shredded Coconut

When I want to sweeten something up like some trail mix I add a little coconut to it.  This can also be used to coat shrimp and chicken dishes and no bread crumbs are needed.  One of my favorite candy bars is an Almond Joy so I have taken the coconut and a few almonds and eat them with a small block of dark chocolate.  There are also many recipes I want to try and will report back if they are worth it or not.

 Trader Joe's Organic Silver Dollar Pancakes

OK, so I know I am bias putting another item from TJ's on my first list but man these are good.  I do a half of serving which is 6 pancakes with a small veggie omelet and that whole meal is under 300 calories, 

Please forward me any suggestions you have and I'll post them up.

Thanks!

Janet

GOING ORGANIC

So, I have finally got there.  I have gone Organic.  It wasn't easy to start.  I felt like a chicken with my head cut off trying to find only organic foods in the grocery stores but I am on track and though I have not lost a lot of weight in the last 2 weeks (only 1.5 lbs) I actually feel better.

Now I am not saying it is taking away any of my pain (if you have DD you probably know the cold weather brings it on big time) but I am more with it and have much more energy.  There will be slips especially when eating out and traveling but they are small and I try harder at those times to choice right.  I spent an hour searching over a menu for Potbelly's before heading to Chicago (actual final destination to my client's in Lisle, IL) and chose a grilled chicken sandwich on wheat flat bread as opposed to a salad which had much more calories.  I bulked it up with lots of veggies and though they are not organic I at least stuck to my guns.  That night I had salmon and broccoli at the White Chocolate Grill and only two bites of dessert. 

Since then I have not had any processed sugar in 2 weeks but have found alternatives to help that craving.  In fact I have found wonderful options for all my cravings.  Late July makes great organic mini cheese crackers and Trader Joe's has Organic Popcorn that was tossed with Olive Oil and Sea Salt.  I have got a few different dark chocolates that are organic and I eat fruit when I really need something sweet.

I am planning on using this blog for my Organic Diet tracker as well as posting info on Dercum's.  I will also help out more on Cure Dercum's now that my work life and free time are getting sorted out.

Here's hoping for a much better year in 2013.