Recovery Time

Last Friday marked the one year anniversary of when my sister, Diana, passed.  I write about her a lot in my posts.  She was a very huge part of my support system through my whole life and it was the hardest loss I ever had to endure.

Her best friend, Nancy, wanted to honor Diana by throwing a celebration of her life.  Besides the obvious emotional stress, as parties go this one was pretty easy on me.  Usually when there is a family party that involves my immediate family, I am highly involved in the planning and preparation but Nancy took care of most of that.  All I did was the invites and the menu with the caterer.

Lumpy Louise:  Brain Fog

For some reason though I am having a hard time getting over the 8 hours of eating, socializing, tiny bit of cleaning I did and standing around a bit too long now and again.  I even tried (in my sister's honor) to drink some beer.  I only got about 1.25 Amstels down and I gave up or should I say my stomach gave up on me. 

Now, two days later, I still do not feel like my normal, horrible Dercum's self.  It is sad that I'd prefer that over anything but that should help you understand just how bad I feel.

Yesterday, I had high pain levels which I expected but today I am very dizzy and feel completely out of it.  With that said I hope this post is making sense.  If not, please forgive me but I'm blaming it on the brain fog.

I have talked to others with Dercum's and various other autoimmunes and 2 to 3 days is about the norm to get over an indulgence such as a long afternoon and evening hanging out with friends and family. Especially throwing in the grief. 

What ever happened to the good old one day hangover?  I miss those days.

A Tribute to Diana: A True DD Warrior

This was a post I made today on Facebook in one of the Dercum's groups:

Not many of you would know her though a few of you would from chatting with me and a couple even luckier ones got to meet her in person. She was my sister but she was so much more than that but the one thing I want to let you all know is a year ago today we lost someone who was a huge support to our cause.



This is Diana at her clinic Paladin Physical Therapy in Cranston, RI

Diana was a PT but she could just as easily been anything she wanted to be including a doctor. She was one of the smartest people I knew. She was always fascinated by all that physiology and stuff. The stuff that used to make me sick to my stomach.

When I didn't think I was ever going to figure out my medical mystery, she took me by the hand and helped me find what I needed to. She was the first person I told about Dercum's when I finally made the connection.

After that she took it upon herself to read all she could on this disease and would actually go out looking for things that would help me. Once she called up an old college buddy that was working with ALS patients to get exercises that would be easy for me to do. This is a person she hadn't talked to in 20 years but she thought he could help. She was desperate to help me in any way she could (and not just me, any person who knew her she would have done the same for).

Diana Mullen-Rivers

She had donated time and money to any DD charity I threw at her. Being a PT and actually working hands on with people, in the 4 years that she knew about Dercum's she told any patient that she felt multiple lipomas on and described similar symptoms to look into DD. At times, she would give them my number or email.

She co-owned a business and taught classes at Boston University where she made sure that her fellow PTs and all her students knew the symptoms of DD. She felt she could make a difference for us that way.

So though her loss was much larger than all that for me, I wanted to let you know that a year ago today we lost a DD warrior but hopefully her acts have helped us all just a bit.

Kids, Don't Make Fun of the Crazy Lady. She Just Might Be You Someday.

It started at 8:05 in the morning with my mother waking Phil and me up because I forgot to set the alarm. Phil had a doctor's appointment scheduled for 8:15 right up the street. 

I jumped up and put my feet into my trusty flip flops that were right next to the bed where I left them the night before. Phil and I hurried next door.  We were borrowing our neighbor's car and luckily I got the keys from her the previous evening so we did not have to waste anymore time.

After I dropped him off only 2 minutes late, I turned the car around and drove home to get my contacts in, throw my hair up in my always fashionable pony tail, brush my teeth, put on a bra (yes, I left the house earlier without one) and grab my purse.  At this point, my mother was just leaving the house and she stopped to say something to me of which I cannot quite remember but she definitely saw me.

I raced back up the street to pick Phil up because his appointment was just a quick one. We drove over to the center of Westwood and I went into Walgreens where it took a bit because the guy behind the counter did not understand how to adjust the price of my Nuvigil. That meant I had to wait for the pharmacist to do so. My doctor had given me a prescription plan card from Teva Pharmaceuticals and though it baffles the mind of the average pharmacy tech, it is totally worth the wait because it brings the cost from my insurance's normal third tier price of $60 to just $10.  For $50 savings I probably could tolerate just about anything.

After Walgreens I stopped by High Street Market which is the next door down in the strip mall. Actually calling the shops in Westwood center a strip mall is over selling it quite a bit. If you blinked your eyes while driving down 109 you probably would miss the entire center of Westwood.  But anyhow, I went there to get a cranberry walnut muffin because I had not had breakfast yet and I was starving. 

When we got home, we pulled into the neighbor's driveway and I went in to her house to return the keys. She and I exchanged a couple of pleasantries which ended in something like, "Whenever Phil needs the car feel free to borrow it".

To which I asked, "Just Phil?  What about me?" 

Over the years I have found that Phil must be the more likeable one in our relationship. So her response was pretty predictable and, hopefully, half joking, "Well if you need it just make sure you have Phil with you."

The rest of my morning and into the beginning of the afternoon I watched Doctor Who reruns as I worked on my blog Lumpy Louise.  Then just after 1 PM I did some sick dance moves for Phil (sick is used there in its true meaning not what it means in slang today). I did this while I ate a slice of leftover pizza for lunch.

I know you are wondering why I would do such a thing.  Let me explain. Sometimes I am just happy and break out into dance.  I dance when I get new shoes (the shoes are on my feet of course) and sometimes when I am eating something that pleases me like pizza.  I dance when I am cooking because I love to cook.  I also dance when I wear a sweatshirt with the hood pulled up because Phil thinks I look like an Ewok and not to brag or nothing, but I am pretty good at doing the Ewok dance.  I just dance, OK.  It's what I do.

This time though I came to a disappointing conclusion.  I am never going to be able to pop and lock without looking ridiculous.  This rules out certain dances moves like the Robot and the Cabbage Patch, the very two my husband was requesting me to perform.  Though this was upsetting, I sucked it up and informed him that I just have to stick with the Twist and Watusi and other more free flowing moves.  He agreed.

I am not telling you all this to bore you with the mundane details of my life.  I am just trying to make a point that there were no fewer than a dozen people who saw me. To top that off  I was only about 4 feet from my loving husband when I felt the need to show off my mesmerizing albeit slightly pathetic ability to dance. Which is definitely close enough that he should have seen it. Then again maybe I am much better than I thought at dancing and he just watched in amazement without noticing anything off kilter.

That brings us to just about 6 hours after I was forcibly awoken by my mom. At this point I decided I should get some laundry done.  As I was picking some clothes off the floor that did not quite make it to the basket (this happens much more often than I'd like to admit probably because I never quite do enough laundry and the basket sits overflowing most of the time) I was shocked to find my flip flops were on the wrong feet.  I tried to think back hoping that at some point I had taken them off and didn't waste a quarter of my day looking ridiculous.

Well, my friends, I have to admit that there was no point in which my flip flops left my feet since I slipped them on at 8:05 AM.

So let me tell you what I learned from this experience: 

First, I am beginning to think that the people in my life and possible others in public now view me as a crazy lady and when they see me doing odd things they just say to themselves, "Oh, that's just Crazy Lady Janet".

Second, feet feel so much better when wearing flip flops properly.

And third, maybe I should try my pop and lock moves with my shoes on the right feet...yeah, no.  I still can't do it.

The Fallout

So yesterday I went to visit family.  Dad drove us down and I brought books and music with me knowing that the ride could be long both ways because of traffic.  I like that my dad drives.  If it was up to me to drive it always made it easier for me to come up with some excuse not to go. 

As it was I had to push down that great feeling of agoraphobia I get when tasked with going anywhere.  I am not sure if that is part of the disorder but it is definitely something that started over 15 years ago after getting Lyme's Disease.  I hate it because I always loved seeing my family and going out with friends. Now I have to admit sometimes when I tell people I don't feel good and I am not going, I do not know if it is just my mind making me feel worse or not.

My dad's cousin. Karen, had us down to Marshfield (which for those of you who are not familiar with Massachusetts is pretty close to the Cape).  Her cottage is a stone's throw from the beach but at this point with this disease it is safer for me to stay out of the sun and not do too much walking.  I ended up situating myself in the cottage for the whole day.  It was still a lot of fun though.

My extended family is huge on my father's side.  My grandmother (or Grammy as we all called her) was the oldest of 15 and only one of her siblings passed away young.  So we have lots of family here in Massachusetts and more up in Canada and a bunch that moved out west to California and Utah. 

Some of the cousins that we were visiting were from PEI, Canada.  The Canadians that were here, besides my Grand-Aunt Ann,  had never been down to Massachusetts and I had never met them before. We had fun telling stories and we all ate...a lot.  I didn't stuff myself all at once but I picked the entire time I was there so by the time we left I felt like a bloated tick.  When will I ever learn?

The car ride home was me laying down in the back seat on my husband's lap reading a YA novel by Holly Black while he listened to Cake on my Kindle (he cannot tolerate the classical music my mom constantly listens to and we have to leave on in her car because she still cannot figure out the radio after 10 months).  You wouldn't think sitting around talking and nibbling on everything I could get my hands on would be so draining but I am telling you with a condition like Dercum's it can be just that.

By the time we got home I was so tired I hardly even looked at the computer and went right downstairs to lie on my bed with my cat, Aiko, and watch some television.  If you need to know, I watched the newly released on Netflix episodes of Comedy Bang Bang! because I needed something humorous to ease my tired mind.  Plus Reggie is just awesome.

I did not get out of bed until about 10:30AM which is very late for me.  I am normally up and at'em by 9 at the very latest.  As I sit here writing this, I feel as though I could easily crawl back downstairs and fall back to sleep. 

But it was all worth it :)

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!