Got the summer funk

It's hot! Dang hot! Make me sweat on the way home from work hot. I've been really worn down. Sleeping extra, trouble concentrating, can't seem to make my body move... I've been asking others on the support group and many of us have been feeling the same way. I'm blaming the heat!

Humidity seems to make us swell up even more. We retain fluid as it is so add humidity to that and what a mess!

I labeled my funk as a monkey funk since I swing back and forth. Another member called hers a BEAR funk. She climbs up, loses her grip and slides back down. What a GREAT description of what we all go through! Thanks, Ann!

If you want to chat with a great bunch of DD people, come visit us a www.mdjunction.com/dercums-disease

Hope you have less pain tomorrow!

Living with Dercum's Disease

What's it like living with Dercum's? It's a roller coaster ride of ups and downs. It's thinking you're feeling pretty good and ready to tackle anything; then standing up and discovering you barely have the energy to take out the trash. It's knowing that every time you see a new doctor you're going to have to explain about Dercum's and possibly be met with skepticism or worse. It's having a friend who tells you that when she's in pain she thinks of a younger person who just died and that lessens her pain. And she doesn't understand why that doesn't work for you. It's giving up the things you could always do like shop, work out, do housework, work full time, etc. because you no longer have the strength or the ability to focus or the activity will result in a painful flare. It's realizing you've gone from "I can do anything" to saying at least once a day "I can't do it."

On the other hand... it's discovering that you are now part of an amazing new family in Dercum's world. Through online support groups, facebook and email you begin to know each person and think of each as a family member and friend. It's the relief that comes with finally getting a diagnosis and then finding a doctor who will work with you to treat it. It's the excitement that comes with knowing that you are part of a group of people who WILL make a difference in how Dercum's is viewed and treated.

I hang on with the firm belief that I have this for a reason and I'm going to do my best to serve that purpose each day.

It's another Sunday evening

And I soooooo dread going back to work tomorrow! I am so ready to be retired!!! I think I need to both mentally and physically but don't know if I can afford to do that yet.

My head keeps dropping... Need to get to bed but I am behind on ebay and need to get some things listed. Hopefully my body can take it a while longer!

It's been HOT here! In the low 90s with a heat advisory. Ugh! Just makes me want to stay inside in the a/c. How about you?

Happy start to the week!

Hugs

So glad for doctor's orders!

Last time I saw my DD doc we talked about FMLA and my increased fatigue. One of the things he suggested - I mean ORDERED - was a nap after work. 20 minutes, set a timer. I needed one today. I don't usually fall asleep but it is sooooo nice to just lay there knowing I can't get up until the timer goes off "per doctor's orders".

Thanks, Doc! :)

I'm going to pay but oh, was it good!

My boss made some yummy salsa for each of us. Fresh from her garden ingredients. When askied to describe it she said "First you get the heat, then you get the sweet." Yesterday I bought some tortilla scoopers so I would be ready. Got into that jar and scooped every bit of it out. YUMMO! She was right about the sweet. She was also right about the heat. So far so good but my typical pattern is to wake up about 2 hours after I fall asleep feeling whatever I ate that day. Seems we DD people don't digest fresh fruits and vegetables well.

Since yesterday's broccoli salad caused my stomach to attack itself, I just can't even wait to see what the salsa does! Fire breathing dragons will take up residence in my innards!

Right now I'm thinking it was worth it. I'll see if my story if the same tomorrow....

Gotta love the TENS

If you've not head of it, the TENS unit is an electronic devise that eases pain. It's also used for healing but for me it's for pain.

I am a pretty stubborn person. (There are people laughing hard at that!) I don't like to take pain meds and I refuse to take anything with steroids in it because I have heard too many people report that they worsened their Dercum's. Last time I saw my doc I talked about having more pain and he - being oh so good at feeling the reaction with his fingers - noticed and commented on it. We sat down to talk about what to do next and he said "I get that you..." and changed what he was saying. I said "Wait! Go back. You get what?" He said he gets that I don't like meds so he prescribed a TENS unit.

It can be very helpful! The reason I'm writing now is because I have the pads on my shoulders which had been very painful this evening. Funny thing about the TENS - in some spots, the jolt of electricity is enough to make you jerk. So I'm typing away and everytime the cycle gets to the jolt, my shoulders jerk forward. Fun stuff!

Let me introduce myself....

Hi! I am a chick with Dercum's Disease. If you've found this, you most likely either have it or think you might.

Dercum's is a rare disease - number 3 on the NORD (National Organization of Rare Disease) list. As of last estimate we had about 500 people in the U.S. who have been identified as having it. We found them through support groups, facebook and our doctor. We suspect there are many more but that's all we can identify.

Being a curious person I just HAD to know.... Looked up the U.S. population and divided it by 500. Golly gee, I am one in about 61,000 some people! I can't tell you how many people have asked me to buy a lottery ticket! :-)

For some reason these odds go against my normal "never win anything" nature. Which of course leads to the big question WHY ME???????

Living with Dercum's is full of ups and downs. My hope is to post regularly and give you some insight into what a day is like with DD.

For today my thought is YAY! I made it through another work week! Only hade to take a few hours of FMLA. Not bad! Today I feel like I have a cold or allergies or something drippy. But.... pain is not too bad and I can actually be somewhat lazy today! A GOOD day in DD land!

Hope you are having a good day, too!