Why I Fight for Medicare-For-All and Support Bernie Sanders

I am sick. Not just your average cold or flu sick. I have a rare, progressive disorder that, in large spurts, gets worse and worse. It has slowly stolen things from me. My physical life, my social life, many of my pastimes and my ability to work. This is the downward spiral I have lived in for over 9 years now but out of everything I have lost, no longer being financially stable was the most demeaning and, yet, the thing I could not solely blame on my illness.

When I was in my twenties, I didn't always carry insurance. Mostly because I could not afford it but also because I worked a lot of temp jobs. Then I got a career not of my choice but because of necessity. I opted to carry insurance because I could now afford it and was getting older.

I worked for a local company back then and it was just me I had to carry insurance for. The premiums were not too bad. I never paid more than $10 for my prescriptions and co-pays and all was right in my world. As a few years went by I moved with my client to a bigger sales and marketing company and had to start paying for a PPO because my company was based out of California. The higher payments and co-pays were still worth it since this is about the time my mysterious disease started hitting me.

After a couple more years, I had to put my husband on my insurance because he became disabled. Now my premiums for two people were taken from my check 24 times a year at a whopping $865 a pop. It cost me and my husband $40 to see a doctor and most our prescriptions, because now I was battling a rare disease, were in the third tier so I was out of pocket up to $500 a month for medicine. This is not including any procedure my husband or I had to get done. Those ran me a few hundred dollars each and happened at least three times a year. All told, I was paying over $25K a year for our premiums and out of pocket expenses. That was almost half of my $55K salary.

At this time we had been renting a house and were always on time with paying rent and utilities but as the medical bills piled up, I learned how to juggle and juggle I did. I found out that in Massachusetts they could not shut off your power from October 15th to April 15th and would go months without paying that bill. I could live without cable but needed internet in the house for when I worked at home. We got rid of the landline and used just a cell phone. We lived on a lot of foods that were cheap and not very healthy which wasn't good for my disorder since my lymphatic system no longer works.

My landlord was very sympathetic since he had two daughters my same age with health issues of their own and would let me slide on paying him when he could. I'd end up borrowing money from my parents just to cover things when I needed to but hardly ever could pay them back. I borrowed $30K against their home equity over a three year period and took loans against my 401K just to stay afloat. 

On top of battling my sickness and helping my husband deal with his, I now felt like I was a burden and it was a huge blow to my dignity every time I had to beg and borrow. I wouldn't go as far as saying I stole though that is what I felt like every time I needed to ask my parents for another few hundred dollars. I'd feel guilty anytime I splurged on a dinner out or a new article of clothing for work. All through this I continued to work no less than 50 hours a week and often times up to 100. The mental stress was making me sicker but I saw no way out.

Finally three years ago, I had to stop the madness. My husband and I moved into my parents' house. We are now the stereotypical kids living in their parents' basement but we were very lucky to have that option. I know many others struggling with medical issues and paying their bills who will go weeks without power or will eat next to nothing just because they cannot afford their medications and food together. They silently sit suffering because they don't have the money to see their PCP but are not sick enough to warrant going to the emergency room where the hospital has to treat them even if they cannot afford to pay the bill.

About two years ago, my symptoms got bad enough that I no longer could work. With that I lost my insurance but I was put on Mass Health (aka Romneycare, the basis of the ACA/Obamacare) and though I pay no premium or co-pays and my husband's, who has Silverscripts, prescriptions are $3.65 or less, I still cannot get most of my medications I need because they are not covered. One medication that worked really well for me costs $600 for 30 pills. Needless to say, I don't take that pill anymore and I deal with the symptom as best I can.

So what does telling my story say about our current healthcare system in the United States and why I believe in Medicare-For-All?

Well, first of all it angers me that there are companies out there making money off illness. I'm not talking about a little money. I am talking huge profits. For example, UnitedHealth Group made $10.3 billion in profits in 2014 and Pfizer, one of the Big Pharma companies, made $39.2 billion in gross profits in 2015.

Secondly, we are touted as being the greatest country ever and yet we find it acceptable to treat our most vulnerable like they are a blight. The elderly, disabled and poor do not deserve to be helped in some people's eyes. I love my country. I always have but this is disgraceful. 

With Medicare-For-All, the program that Bernie Sanders is promoting, the government would be the sole customer to Big Pharma and they would be able to fight for better prices. Also getting rid of private insurance companies would make it so the doctors and hospitals would only have to deal with one system. 

There are many other benefits including economic ones that I won't go into detail about here. If you want more information on it go to http://www.medicareforall.org/pages/Benefits

My driving goal in advocating this plan is that I do not want what happened to me to ever happen to another person or family. I will use all the energy and time I can muster and continue to fight for Medicare-For-All.

As for my support for Bernie, it is this program that brought me into the fold but the many other programs he is proposing that will be a godsend to many, many people who are vulnerable right now in this country's current economic environment, that makes me appreciate him a little more every day. He genuinely cannot stand seeing people suffer in anyway and wants to make this world a little better for everyone.

After all, LOVE TRUMPS HATE!

Preparing for Dercum's Awareness Day

April 4th will be the first annual Dercum's Awareness Day. We will be using social media and posting flyers locally in honor of this event. To help show your support please feel free to post one of the following graphics on social media or direct people here to make a donation to the Rhode Island Dercum's Research Fund, Inc.

Donate Using Paypal

 

All proceeds go towards Dr. Karen Herbst's research into Dercum's and other adipose tissue disorders. RIDRF is a 501c3 charity and all monies donated can be claimed on your taxes. For more info on Dr. Herbst and her work on ATD's, please visit www.lipomadoc.org

 

 

 

 

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 :)

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

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 through 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)

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

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!

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.

Sudden Swelling

I was feeling pretty good the last few days while following the diet. Yesterday was my neice's graduation party and I was freeling fine up until about 1.5 hours prior to the party. My calves and feet did a sudden swelling on me for no reason. Yes, the weather is warmer but it was cool and comfortable in the house. I didn't over do anything either.

I could barely stand on my puffed out feet. I got to the grocery store and went in just to get stuff for a caesar salad. I was so tired after that. My sister told me I should have stayed home but I toughed it out for a few hours.

Another thing I noticed was that I was in a bad brain fog as well. I could not remember people's names that i have known for over 20 years (my brother-in-law's family) and just in speaking a word would completely leave my brain.

Then, at about 2 o'clock in the morning I woke up and felt that i had a full out cold. Now not so much. I am achey and sore but the sinus issues are not there. No headache either.

With this happening for no reason, it is frustrating. This disease is just nuts. Not only day to day canit change but minute to minute. I was actually eating right with no dairy, processed, gluten and I was eating organic when possible. I was taking my medicine correctly and I wish I could pinpoint something I did wrong.

Well, I'll just have to keep going. There is nothing else for me to do.

Getting Back on Track: My 2011 Resolution

Last year I went through months of being really good on my diet and even did as much exercise that I felt I could (normally about 3-4 days a week for about 20-30 minutes at a time). Keeping in mind that after years of being undiagnosed, I was a newbie to this disease (was just diagnosed April 2010 and only knew about Dercum's for about a year before that). So, I was very dismayed that my weight was not changing except for the 10 pound fluctuation that happens with the swelling on a day to day basis.

With my fists clenched and me pumping both back and forth in the air at the whole miserable fate of this disease, I gave up. Why should I care if I eat right and exercise if my weight is going to remain at the same point? Why not gorge on ice cream sundae dinners and Dunkin' Donuts' coffee rolls? Extra cheese and sausage and/or pepperoni pizza five times a week with out a care in the world? Don't mind if I do. Don't feel like cooking dinner? Well, HELLO Micky D's!

And it wasn't only my diet that went to Hell. Even with the pool opened at my parent's house all last summer, I went in the pool twice. I had so many excuses as to why I should not exercise, I started to believe I really was not supposed to do exercise at all with Dercum's because it would just make it worse.

Well, I can tell you that convincing myself diet and exercise did not matter took a toll on me not just physically but emotionally as well. Having a chronic illness does not mean one should lay down and just give up. Life is what you make of it and I choose not to be a victim but a fighter.

Being good to your body does not mean you need to give everything up. The old adage "everything in moderation" is key to living a better life. One just needs to figure out just what their own moderation level is. For me, it is definitely a once a week rule. I will try for 2 weeks to be very good and detoxify my system and then I will allow myself a once a week cheat treat. If I don't mentally plan for this, I can easily fall back to my old ways.

I have been given the gifts of wisdom and the need to help others but now I am changing how I disperse these on others. Whether it is the people I train at work or the advice I am giving at Cure Dercum's and before that at MD Junction, I always tell people to do as I say not as I do. Well, for my late but very much needed resolution for 2011, I will lead by doing not just in words. I even started getting organized at work which is just a huge step. My desk is no longer considered in the top 3 messiest at work. I am not perfect but every positive step I take will not only help me but every other person in my life.

I hope this inspires others to do the same.

Day 3 of Diet

Yes, I decided to go back onto my diet. I following most of the RAD guidelines but mix it up with the Alkaline/Acid diet and TCM's cold/damp condition diet. I have to say, I am feeling better in just the short three days.

My favorite thing that I did to treat myself was taking a trip to a local grower, Ward's Berry Farm in Sharon, Massachusetts, and bought some freshly picked, very delicious strawberries. I also picked up some organic veggies that I grilled and added to some quinoa (a gluten-free grain). I love having the grill back up and running. I don't know why I waited so long to get propane. I usually grill all year round but last winter was a tough one for me.

Since starting the diet, I am not feeling hungry between meals and no heartburn at night.

So, what does all this mean? Basically, I am eating organic/natural when possible. For protein I am consuming cage-free, natural eggs, chicken and lots of fish. I am avoiding dairy and red meat though I'll be able to have some every once in a while. I am staying away from gluten products and anything processed. Nuts and a piece of 72% cacoa dark chocolate for dessert. YUM!

A Very Tiring Week

It was a tough week. Just tired and sore. My allergies are kicking in but made it to work everyday (thought about calling in a few times - OK at least a few times every morning). I just find if I let the fatigue and pain get to me, it will win. Got to keep going.

I hope to get housework and the Cure Dercums blog up and running. Already threw it out there on Facebook and got a few bites. Kind of exciting. I really think we can make the site something everybody can turn to. So, no rest for me. I'll hit the hay acter watching a bit of the game (Go B's) and then get my sorry butt out of bed in the morning. Got a lot to do!

UGH! Humidity

One of the hardest things I find trying to deal with this crazy disease is the weather. For the last three years from May to August, the skin on my stomach has a burning sensation constantly. The only thing that takes this feeling away is when the humidity breaks, but, of course, I live in New England so it is just a constant aggravation.

I explain the sensation as feeling like getting a really bad sunburn and it is starting to heal.

I cannot wait for the pool to open up. Not only will I be getting so badly needed exercise in, it will cool me off for at least part of the time.

So, what to do, what to do...