A kind and caring gesture

As many of you know I am an ebay seller. Because of that I am in the post office quite a bit. I've gotten to know several of the clerks quite well.

A couple of weeks ago I was having a rough day. Heading from work to the post office thinking about all that comes with Dercum's and in tears. My favorite clerk, Robb, waited on me. After he posted everything he asked "Is there any other service I can provide?" I blurted out "How are you with therapy?" He said many people don't speak to him after he gives advice. Well, how could I resist that? :woohoo: So I explained that I have a rare disease and am having a really hard time dealing with it. One of his pieces of advice was "Count your blessings." Some days that doesn't work but on that day it actually struck a note so I went home and made a list.

I saw Robb today for the first time since then. I told him thanks for the advice. I said I have good and bad days but what I say a lot is that I am so tired of being strong. He said "Well, I am here for you" and then he put out his hand. I put mine out and he held it for a moment. What a kind and caring thing to do! I so needed to have that one special person reach out today!

Just had to share so you know that there ARE some good people out there!

Here's my hand to all of you!

An awesome sis, an awesome store, a surprise discount & another silly GPS

Last week my sis Chris was visiting from North Carolina. She and her hubby, Dan, stopped to have dinner with Andrew, Cindy and I. Had some yummy stuff at Cracker Barrel then those 4 took off for a local brew pub. I had to go home and rest for my big day the next day.

I headed up to Winamac in the morning. (Thanks, Dan, for pointing out to Chris that morning to me means any time before 11:59. You know me so well!) The 3 of us plus stepmom, Carol, visited then headed up to Toto for lunch. Had that yummy fish! Dan gives kudos to the tenderloin. Richards Cafe in Toto - worth the trip! Chris and I then moved on to our traditional "Sister time". We headed up to Laporte to a cross stitch store I have been wanting to visit called House of Stitches. OH MY GOSH! What an awesome store! You could spend days in there looking at everything. Amazingly, I mainly focused on Halloween patterns and went through probably 100 or so. Chose one that is just adorable! Got my fabric and Chris helped me find my colors. She got an adorable skeleton fob kit. What an AWESOME store! I will be back for sure!

Chris is an antiquer. I used to be moreso but am trying to get away from collections as I prepare to retire. (So I claim.) We went to an antique mall in an old department store. It is full of nooks and crannies and fun to look at all the different things. Neither of us found anything so we decided to find a Goodwill. Closest one on the GPS was about 20 miles away so we headed there. I found kits (nyah, nyah, Ann!) and Chris found a neat jack o lantern and a cat candle holder. Got up to the register and found out they give a senior disocunt of 10% EVERY DAY! WOW!!!

Pam did not want us to get lost so had loaned me her GPS. Jimmy(ie?) Incredibly, Jimmy did NOT ONCE tell us to make a u-turn! I didn't think GPS's were capable of not saying that! She did have to recalculate quite a bit especially since she couldn't seem to tell which way my truck was facing and I'd start down the road the opposite direction. She got REALLY lost trying to find the cross stitch store! I am so glad I looked at the web site and read their tips for finding it!

Thanks, Chris, for listening to my sad story, for patting me on the back when I cried and for caring. I needed that! Love you, sis!

Little Miss Sad

I have that stuck in my head. Googling shows it's a song, a play, a doll... Too often lately, it's been me. I have this big problem of being disappointed when people I thought I could count on fail me. Two of those 3 docs (one was just a jerk) did it. Lately it's been the Miracles guys - Dan and Dave. I've told both about my having Dercum's. Dave said he'd catch me later or drop stuff off. I dropped stuff off after not seeing him for a while. No word since. I suspect his super niceness is just a facade!

Dan was another story. I emailed him twice - once telling him I have it and once saying "need help" and explaining that I can no longer do the exercises I have been doing because it makes Dercum's react. Could he please help me find ways to work out without impacting my joints? He said give him some days I could meet and he'd find time. I gave him days, he never answered. Well, he answered with a promotion for his next event. I dropped off materials last week. Still no answer about what I can do. Last time I went to work out I just felt sad. Really sad. Little Miss Sad!

What do you do when people fail you? I know I have high expectations but how do I misjudge character like that? I guess that's an issue for analysis...

Meanwhile, I am doing okay. The support group is wonderful as are my friends and family. My "little ms. kick butt" has returned so all will be well now. :-) It is fascinating almost daily to see what new things pop up (and out) on my body. I bruise easily now. Last week's show n tell was the 3" by 4" bruise I got by bumping a shopping cart!

Ann and I went to Indy Friday and found way too many goodies at the HPB sale! How we love those! Carol and I went and saw "Julie & Julia" today. (By the way - I have the frequent moviegoers card now and am saving up for free snack bar items. Yay!) A nice movie. Meryl Streep was EXCELLENT as Julia! I miss Julia's enthusiastic take on life! I had two redbox movies. One was strange but enthralling. The other was "Paul Blart Mall Cop". I wasn't sure if I would like that and it definitely had its stupid moments but what a great story! I always love when the underdog wins in the end!

Hey! There's a good motto for the Dercum's group - the underdog wins in the end! YEAH!

Hope you all are having a good long weekend.

Take care!

It's such a good feeling to be supported!

No, no, not THAT kind of support!

I've run a support group (TippecaKnees) for about 4 years. I've talked to many, many people over the years to reassure them and get them through the surgery or after. It is very rewarding to me each time I help someone. But I never felt I was doing anything special. Now I am on the other side. I am the one who needs the support now! I found a wonderful Dercum's support group on mdjunction. It's been less than a month but I already feel like I know many of them. The comfort and reassurance they give me is priceless. I try to be supportive and encouraging, too.

These support group members - especially Jennifer, Sylvia, Sigrid and Trudy have helped me keep going as I flounder around trying to adapt to new feelings both mental and physical. I am realizing what everyone told me - the reassurance of others and having people to talk to who know what I am feeling is worth more than I can say!

The circle has come around. Lumpettes, I salute you!

The group is also good for some funny stories which I will share another day.

Take care everyone!

P.S. If you have a medical condition and need some support, check out mdjunction. It seems to have a whole bunch of great people participating!

Thursday Funnies - Embarrassing Medical Moments

These are great - especially the last one! Enjoy!

EMBARRASSING MEDICAL EXAMS

1. A man comes into the ER and yells, "My wife's going to have her
baby in the cab!" I grabbed my stuff, rushed out to the cab, Lifted
the lady's dress, and began to take off her underwear. Suddenly I
noticed that there were several cabs ---and I was in the wrong one.
Submitted by Dr. Mark MacDonald, San Francisco


2. At the beginning of my shift I placed a stethoscope on an
elderly and slightly deaf female patient's anterior chest wall. "Big
breaths," I instructed.. "Yes, they used to be," replied the patient.
Submitted by Dr. Richard Byrnes,Seattle, WA


3. One day I had to be the bearer of bad news when I told a Wife
that her husband had died of a massive myocardial infarct. Not more
than five minutes later, I heard her reporting to the rest of the family
that he had died of a "massive internal fart."
Submitted by Dr. Susan Steinberg


4. During a patient's two week follow-up appointment with his
cardiologist, he informed me, his doctor, that he was having trouble
with one of his medications. "Which one?" I asked. "The patch, the
Nurse told me to put on a new one every six hours and now I'm running out of
places to put it!" I had him quickly undress and discovered what I
hoped I wouldn't see. Yes, the man had over fifty patches on his body! Now,
the instructions include removal of the old patch before applying a new one.
Submitted by Dr. Rebecca St. Clair, Norfolk, VA


5. While acquainting myself with a new elderly patient, I asked,
"How long have you been bedridden?" After a look of complete
confusion she answered.."Why, not for about twenty years - when my
husband was alive."
Submitted by Dr. Steven Swanson-Corvallis, OR


6. I was performing rounds at the hospital one morning and while
checking up on a woman I asked, "So how's your breakfast this
morning?" "It's very good, except for the Kentucky Jelly. I can't seem to get
used to the taste" the patient replied. I then asked to see the jelly and
the woman produced a foil packet labeled "KY Jelly."
Submitted by Dr. Leonard Kransdorf, Detroit, MI


7. A nurse was on duty in the Emergency Room when a young woman with
purple hair styled into a punk rocker Mohawk, sporting a variety of
tattoos, and wearing strange clothing, entered. It was quickly
determined that the patient had acute appendicitis, so she was scheduled for
immediate surgery. When she was completely disrobed on the operating
table, the staff noticed that her pubic hair had been dyed green, and
above it there was a tattoo that read, "Keep off the grass." Once
the surgery was completed, the surgeon wrote a short note on the
patient's dressing, which said, "Sorry, had to mow the lawn."
Submitted by RN no name

AND FINALLY!!!................


8. As a new, young MD doing his residency in OB, I was quite
embarrassed when performing female pelvic exams. To cover my
embarrassment I had unconsciously formed a habit of whistling
softly.The middle-aged lady upon whom I was performing this exam
suddenly burst out laughing and further embarrassing me. I looked up
from my work and sheepishly said, "I'm sorry. Was I tickling you?"
She replied, "No doctor, but the song you were whistling was,
"I wish I was an Oscar Meyer Wiener".

Dr. wouldn't submit his name

Where has all the John Deere stuff gone????

Today was a bight, sunny and warm (VERY!) day. Andrew and Cindy took me to lunch and we ate at surely one of the last remaining Ponderosa's! Which is a shame because their buffet is always tasty. AND they offer a SENIOR DISCOUNT if you're over 55. I turned 57 today. Wow, where have the last two years gone?

After lunch we stopped at the new Rural King. I was excited because they always have John Deere stuff like shirts and stuff for the home. We went in and were greeted by an (I think he was) automated man. He waved and everything! Too bad he was pretty much selling the store. Cool though. I headed toward the clothes and circled and circled again. NO JOHN DEERE! I said "This is Rural King and there's no John Deere and that's just... just...." My son filled in with "wrong!" No kidding! I scoured the store for John Deere items. All I came up with was JD tractors for kids and little JD toys. Not what I had in mind! I am brokenhearted now! :-(

Luckily Cracker Barrel still carries some stuff so I guess I'll have to make a run out there. And my sweet sis even gave me a CB gift card for my birthday so I can go hog wild! (Get it?)

Oh! Have to tell you about one of the cool gifts my son and daughter-in-law gave me. They found a tablet that says "Stop me before I volunteer again". OH MY GOSH! That is sooooo me! I don't know where they find these great items - they won't tell!

It's ebay time so I must jump over and get busy. Hope you all had a good day, too!

It's rare for me to feel this rare...

I like my steak rare. I like to admire rare artifacts. Rare books are a treasure! And you all know how much I LOVE the rare bargain find!!!

I've now moved into a new state of rare and I'm kind of struggling with it. Three weeks ago my doctor (the good one) confirmed my self-diagnosis of Dercum's Disease (also known as Adiposis Dolorosa). Dercum's is defined by the WHO as a rare disease. Wow! How cool is that? The cause is unknown, there is no cure and there is very little research being done. (Mostly anecdotal which is a single observation according to the doc...) It is a progressive disease characterized by painful lipomas (lumps of fatty tissue) in the body. It is thought to cause weight gain - sometimes quickly and for no reason - and it makes it difficult to lose weight. One of the most fascinating aspects of it - if I look at myself in the 3rd person - is the changes it causes to your body. My thighs have swelled up and gone back down leaving more lumps and folds (elephant legs I call em). My calves and arms now seem to have a layer of squishy, rubbery fat on top.

I've started calling myself a shapeshifter. I told a dear friend that at lunch and then looked for a definition to be sure I was correct. I found one that is so perfect, it's funny.
"There are many different styles of shapeshifting to be seen. One is the literal bodily alteration where the body physically changes. Depending on what the subject is changing into, the different parts of the body will shift, stretch, compress, and expand. This type of shapeshifting is often against the subject's will and can be a slow and painful process; articles of clothing are usually lost or destroyed, as in the case of the werewolf."

Huh, what???? The werewolf? Clothing being destroyed???? The rest of the description fits so perfectly with what is happening that I'm wondering if I need to start keeping an eye on my clothing and watching for extra hair growth! =:0

As I said I have been struggling big time with this. Mainly because I realized that the treatment I have received at the hands of 3 doctors who based their judgement on my appearance was even more unwarranted. It's going to take a while to work through this one. But noone else should have to go through that for this reason so I want to make you all aware of it. Education is really, really important in this. I am now a face of Dercum's so please help me spread the word.

Other than the shapeshifting story and being cool, there really hasn't been much fun with this. I do thank God for the support groups I have found online.

Sorry to be a downer this time.

Take care!