Monday, December 1, 2014

Giving Tuesday

Well, with all the holiday shopping days, a few years back people said, "Hold on a minute. Shopping is not what the holidays are all about! Let's make a day for giving (minus the gift giving that happens all through the season but you know what I mean)".

OK, maybe those were not the exact words but with Tuesday, December 2nd being Giving Tuesday in 2014, why not make a final tax deductible donation towards Dercum's research and awareness? You can claim it on your 2014 taxes AND feel good about it to. Seems like a Win-Win to me :)

RIDRF PayPal


Rhode Island Dercum's Research Fund, Inc. was established over 8 years ago when a group of Barbara Lyons Croker's friends and family wanted to do more for her and the rare disease she has. In return, they have been helping the rest of us with Dercum's and continue to do so to this day. All proceeds go to Dr. Karen Herbst's research and they are looking at other ways to help the DD community.

If you prefer not to do Paypal you can mail a check to:

RIDRF c/o Jim Greene
1 Drysdale St. Unit 101
Warren, RI 02885

Thursday, November 20, 2014

Why I Wish I Had Cancer

            Yes, you read the title of this piece correctly. Yes, I did just watch A Fault in Our Stars and as others cried at the beautiful yet tragic love story that played out in front of their eyes, I was crying out of frustration. Yes, I know I am making what seems to be a ridiculous statement that could be viewed as pretty heinous and in no way do I mean disrespect to anyone who has fought a battle with any type of cancer nor do I really have a death wish. I still have wants and dreams that keep me going, things I look forward to seeing and many people I love dearly. I am not giving up. I am just sick of being sick.

Before you judge me, let me try to explain why I deign to make such a statement and then maybe you can forgive me, understand why I write this or at the very least throw a little bit of sympathy my way. I am a 44 year old woman who suffers from a rare, very progressive and very painful illness called Dercum’s disease. For those of you who know what that is you either have been listening to me and I do thank you with all my heart or you are one of the few that agonize along side of me and, therefore, you hold a special place in my heart.
Now for those of you who have no clue what Dercum’s is, I will try to explain it the best I can. Please do not hesitate to reach out to me if you have any other questions or think you may have Dercum’s disease. I am including my email information and some resources at the end of this piece. I promise I will do everything I can to steer you in the right direction and I honestly wish I could do a lot more.

 
Dercum’s disease (DD), known medically as adiposis dolorosa (which literally translates to painful fat) was first recognized by Dr. Francis Xavier Dercum in 1888. Though Dercum’s disease is its most recognizable name it is really a syndrome (a collection of symptoms that indicate a disease) and sadly, it being one of the rarer of the orphan diseases, there are not many medical professionals that even know it by any name let alone how to diagnose or treat it.
Dercum’s is known to effect the vascular and lymphatic systems. There are many symptoms that can present but the main indication of Dercum’s is painful growths in the subcutaneous fat. These fatty growths are called lipomas and can happen all though out the body and because they are so insidious having them surgically removed is not always recommended and possibly can make the lipomas or symptoms worse.  Once the fat tissue is formed into a lipoma, exercise or diet will not get rid of it. That fat is there to stay until it is surgically removed. The progressive onset of Dercum’s usually starts sometime in the mid-thirties but a lot of patients have claimed they noticed symptoms as far back as adolescence.
Besides lipomas, the symptoms people have can vary from patient to patient but most commonly include rapid weight gain or loss, chronic pain, chronic fatigue, anxiety, depression, muscle spasms, cognitive issues, headaches, swelling and sleeping disorders. To put some perspective on the disease, look at the symptoms of fibromyalgia, MS, Lupus and other autoimmune diseases and add painful fat on top of the mix and you basically got Dercum’s. Also because it is a syndrome, many other health issues can show up like diabetes, hypertension, thyroid disease, asthma or other chronic lung disease, IBS, migraines, endometriosis and kidney disease, just to name a few.
OK, so with that explained now I will get into the reasons why I would rather have cancer instead of Dercum’s:
Cancer Has Recognition Power
I was at the pharmacy getting my prescriptions and was asked, "Do you want to donate to Stand Up to Cancer?"

First thought, yes. Second thought, those bastards get all the money. Third thought, Janet you are going to Hell for thinking that. My response, “Yes, I will definitely give $3 to Stand Up to Cancer. What do I look like some sort of unfeeling monster?” Maybe I didn’t really say those words but that is what I said in my head as I hit the button on the credit card swiper for a donation of $3.
Then there was a great campaign over the last year for a disease that was not cancer related. The Ice Bucket Challenge was a wonderful feat of awareness and fundraising for ALS. I marvel at the simple brilliance of using social media in the way they did and I am so happy that it was so successful. Now let me tell you all a secret. All of us suffering from other really rare and lessor known diseases had a thought or two go through our heads through the entire summer of watching video after video of friends, family and famous people drench themselves in ice cold water, “Where is our awareness? Where are our funds for research coming from? What about us?”
When you have a rare disease there is no money coming in from the pharmaceuticals or grants from the governments for research. You don’t get rock bands throwing concerts for you or celebrities writing checks for thousands of dollars.  If you are lucky enough to have a doctor or team doing research all the funds are raised by the people with the disease and their friends and family. The same people are hit up time and time again to give money and sometimes it just seems like a losing battle.
So, yeah, give that $3 to help cancer but consider giving the same amount to some other lessor known fundraiser. It could be for a sole person doing a GoFundMe online trying to get to see the one doctor in the entire country doing research on the disease they suffer from or one of the many walks, golf tournaments, 5Ks, bike rides, dinners, pancake breakfasts, poker runs, craft shows, dances, etc. running weekly in your area. We do appreciate and rely on every dollar we can get.
That brings me to my second reason which is covered a little bit under this one but deserved its own section as well.
Rare Diseases are Not Sexy Enough for Research
You got that right. I said sexy and not that there is anything sexy about cancer but there are plenty of draws for pharmaceutical companies and the government to put money into research for diseases that touch people’s lives every day. If you do not know anyone personally with cancer there are plenty of celebrities who have fought or are fighting their battle now. There is always a new face for cancer that a disease like Dercum’s may never have.  
However, because I brought up sexy, the one thing DD and certain cancer patients can agree on, there is nothing sexy about painful lumps!
Doctors Hate Treating Us
It’s not that they hate us though at times we feel they must. What they hate is trying to treat someone they cannot actual treat. Their hands are tied. Most facilities they work out of or insurance companies will not allow them to do experimental treatments on patients and since Dercum’s is a rare disease almost everything suggested to treat it is considered experimental.
Before your panties get into a bunch, I am not saying that all treatments for cancer are easily obtained by the patients and families. However, because it is cancer there is a better chance that the insurance company can be overturned. At least the first part of the appeal process is done just in the fact that they know what cancer is.
There are a lot of similarities between Dercum’s and other diseases. One disease it has a lot in common with is lymphatic cancer, but without having the malignant cells most doctors cannot justify to an insurance company that we would benefit from radiation. In all reality, we don’t even know if we would benefit anyhow because there is just not enough of us to do trials on.
I’m Tired of Talking and Not Being Heard
OK, I’ll admit, I love to talk. I love to write. I love to explain. In fact I have been told that I am a chronic over-explainer but some days I am just too tired of explaining just what is going on with me. One day I may be up and fine and another day I am out for the count.
For some reason I feel that if someone tells you they have cancer there is just that understanding and no explanation is needed.  Since I love to explain so much, let me try to make this clear: If someone has a sickness that is going to be with them until the day they die, whether it is that sickness that is the cause of their death or something else, it remains a burden every day. Some days are better than others but it is still there insinuating itself in our bodies and waiting to strike again. Oh and usually it strikes with a vengeance if we mere sickly mortals think we have overcome it even for one single sunny afternoon.
We, my fellow sufferers and I, all know this and need you to understand that fact. We will crash but we refuse to be out for the count. Let us have our day in the sun and help us get through the next few as best you can. We are still people and do enjoy things once in a while.
              There is No End in Sight
              Now I will get a little morose. Sorry, it has to happen and in no way do I want a pity party. If I see a bunch of pitying comments I will feel I did not get my point across, so please try to refrain.
I am writing these things for you, the reader, so that you will understand. They may make you upset but this is reality. I cried as I wrote this. I cried as I read this out loud and I am crying as I am editing this. The point though is not to make you cry because crying clouds your eyes. The point is to make you see with your eyes open. So if I ask one thing, I ask you to reread the following if at first there are clouds in your eyes. Then keep rereading until you understand what I am saying. Thank you.
I suffer from a painful, progressive disorder that will not get better and I’ll have for the rest of my life. I have had to accept the fact that I will always have to account for this horrible thing in everything I do from now until I take my last breath which could be 40 years from now.
At 44, I am still relatively young but there are days I cannot get out of bed. I feel useless and unreliable. With the progression of this illness I have slowly lost so many things in my life I am in a constant cycle of grieving for something and yet I smile. I tell you I am fine. I put on a mask and I try to make you feel more comfortable around me. I hate scaring people with the truth. I hate thinking of the truth. I hate that my body is rebelling against me which is pretty ironic because I loved to rebel when I was younger.
I wish I had cancer because I don’t get the relief of coming to grips that I only have months to live because I have many, many years ahead of me of being in pain and it getting worse. I don’t get to ever say I beat this because there are no treatments or cures approved for me to take that will make that so. I don’t get the recognition and sympathy with just saying one word when people ask what is wrong. Instead I need to explain myself at every turn.
I don’t wish I had cancer because I want to die or in any way I think it is a cake walk compared to what I have. I just wish I had something that you all would understand and hopefully you are a step closer to doing so.
 – Janet L. Mullen
If you want to reach me, email me at jlouisemullen@gmail.com
Besides this blog, Living With Dercum's Disease, Janet also writes content for Cure Dercum's and co-administrates on-line support groups including Dercum's Research and SPASMS - Support for Pain, Agony, Sickness and Mental Suffering both which can be found on Facebook.
To donate money towards research for Dercum’s:
Rhode Island Dercum’s Research Fund, Inc. (US 501c3 charity)
RIDRF - Paypal Donation Page
All proceeds donated go to Dr. Karen Herbst's research for Dercum's and other adipose tissue disorders. Dr. Herbst a board certified Endocrinologist for more info on her and her research, please visit www.lipomadoc.org

Monday, July 21, 2014

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.

Friday, July 18, 2014

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.

Wednesday, July 16, 2014

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.

Monday, July 14, 2014

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 :)

Saturday, July 12, 2014

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.