What about your spouse?

Dercum's Disease
#21

My husband is great! I’m sure he gets frustrated a lot but he doesn’t show it. He knows I want to remain at the highest level of functioning I can so he helps me with EVERYTHING! On the days I work (I work 12 hour shifts as a nurse) he brings me something to eat so I can take my pain meds then he pours a hot bath so my muscles can get relaxed and I can get limbered up since I wake up stiff every morning. He drives me to work and drops me off at the door.

Even though I am on my feet all day the ability to get going in the mornings is tough. By the time I get to work my pain meds are kicking in but I have to keep taking them throughout the day just to function. By the end of my shift I hurt so bad I can barely stand it. After putting in a long hard day of physical labor himself, my husband picks me up and makes sure there is something for dinner that is healthy for me to eat. Then I relax in the recliner which has the heat and messager pad that my husband bought me at Christmas. On my days off I try to do all I can but he even helps with dishes, laundry and grocery shopping when he has to. I think he does so much because he watched his dad and sister die from cancer, his mom survive lymphoma and my dad suffer through chemo, radiation and a nearly fatal heart attack.

He knows my symptoms are real(he can feel the lipomas when he rubs my legs and back) and he knows I am grateful for all he does. He is also very understanding when I am too sore for physical contact but eager for the times I am not. We try to make the most of my good days and try not to get aggravated at each other on the bad ones.

#22

That is wonderful! I am so glad you have so much support from him. He sounds like a dream come true. It must be really difficult to work 12 hour shifts. Is there anyway you could work less hours?

Joan

#23

Benita, I don’t think anyone meant to “jump” anyone for using steroids! I think they (and I) were just concerned that some were unwittingly making their condition worse. I know there are times when there is just no choice. I have asthma, so when I get sick it goes to my lungs, and I usually have to accept the use of steroids to be able to breathe. At the same time, they make me feel better all over for a short while. It’s tempting to use them all the time, but I know they make me worse in the long run. You’ve got to do what you’ve got to do, though. I totally understand that because I know you are in extreme pain most of the time, and if that’s the only way to get some relief, then you really have no choice.

Pamela

#24

I think my DD was hastened by having steroids but that doesn’t mean I would not take them if I were in your situation. Before my trigeminal neuralgia was diagnosed I actually thought I might go into the garage and drill my head with the electric drill. I banged my head against the wall and stumbled mindlessly about. I finally got my doctor’s attention when I told him about the drill. I am so sorry for the incredible amount of pain you have had to live with.

It is so nice you are able to have the time with your grandchildren. I see many of us in here have grandchildren and enjoy them so much even if it is hard to care for them,

Joan

#25

Pamela:

I wasn’t referring to you. I know it wasn’t you on the other group because I know who it was and they read me the riot act on 2 occasions and they were more than a bit ugly about it. They basically called me a liar about the severity of my condition and told me that if my condition was really as bad as I said it was and if I really wanted to get proper treatment I wouldn’t use steroids for any reason and I would do exactly what they told me to do. They were not public in what they said, they emailed me privately. I know that I don’t like being called a liar, especially when they don’t know me but also they don’t live in my body. I had enough drs doubting me, I sure didn’t need to be dictated to and attacked by someone who didn’t even have the guts to say it on the public postings. So I haven’t been back to that group in almost 3 years.

I’m not faulting anyone on any treatment they get to be able to function and I know everyone in this and my other group feels the same way. I also know that no one I’ve seen communicate on this or my other group would ever attack anyone else on a personal level. I understand the need to warn others about the possible side effects of steroid treatment but a personal attack without provocation certainly isn’t the way people should conduct themselves in a support forum.

Benita

#26

Joan,

Thanks. Pain makes crazy things come into our heads doesn’t it? They say don’t corner a wounded animal and we are wounded animals, aren’t we? I’ve never gotten to the point of a plan or specific thoughts like that but I’ve wanted to just make it go away somehow.

We are lucky to be here and able to be involved in our grandkids’ lives, even if it might be limited.

I’ll tell you a funny that one of the girls did yesterday. I took their shirts off before they ate lunch yesterday so they wouldn’t mess up their shirts because the meal was messy. We were all eating and Lily looked at me and said, “Bebe, take shirt off.” I asked her if she meant for me to take my shirt off and she said yes. I laughed and told her, “Oh, no, I can’t because big girls didn’t go around without their shirts on.” She cocked her head at me because for weeks we’ve been talking to them about “big girls” going to the potty and said, “Lily’s big girl.” I agreed with her and tried again with 2 different explanations which were both met with, “No, Bebe, take shirt off.” by both girls. So finally I said, “No, I can’t cause if Bebe takes her shirt off her boobies will fly everywhere.” Whereupon Lily looked me in the eye and looked at Abby and both of them started dying laughing and Lily said, “I know.”

What am I going to do with them when they get older? I think I’m going to be in trouble. My mind doesn’t work as fast as theirs does plus they tag team me.

–
Benita

#27

You are welcome and stay tuned for more adventures in the life of Lily and Abby cause I know lots more are coming in the years to come. They are only 2 so they’ve just begun!

–
Benita

#30

Wow! They are smart and funny! When my grandson was two almost three I pointed to my belly and said that it looked like I had a baby in there. He told me I had three babies and pointed to my boobs and my belly. Then he asked if he could see them. I told him no, that they were private. He said, “please just once and I’ll never ask again.” He continued with, “why not?” Well he never got to see them and he is 13 now and noticing all the girls. I hope he doesn’t try that line on them.

#31

He is - you know he is. Little womanizer at 3! Although by this time he probably has come up with some better lines to use on the girls.

–
Benita

#32

Very funny stories. Makes me remember one with my sister, Hazel, and her granddaughter, Rachel.

Rachel was a very pious child - always loved the Lord, prayed for the sick, and wanted to know how God thought about everything. We’re not sure how she came up with this bit of “theology” but it sure was cute! One day, Hazel heard Rachel telling her cousin, Jennie, that when you tell a lie, your chest gets bigger. Then she said, looking at her very large-breasted grandmother, “Gram musta told a lotta lies!”

:wink:

me

#33

She must have been thinking of Pinnochio. Lol

#34

You guys crack me up. I see where your grandchildren get their senses of humor. Children are the saving grace for me also. It is so great that we can laugh together and cry together. We don’t like to talk to our “in person” friends about how severe our pain is or isn’t. It is easier to talk to our group as there is a greater chance that someone will understand what we are saying. NOT…“my pain is worse than your pain” but “I understand your pain and would I could wish it away”. Darn…I have to stick around as life is not all bad. If it were than I could be out of here. As it is, due to all the great stuff that comes with the bad, I am here for the duration. Now, if I could just borrow a screwdriver and ram it into the nasty aliens on my sciatic nerve!! In other words I have a terrible pain in my a–.

#35

Lisa, your husband sounds great! You are very lucky to have him. What really stuck me about your post is that you are still capable of being on your feet for 12 hours!! I can’t do more than 10 minutes.
Even back in the eighties, an hour and a half was pretty much my limit. You must be one tough lady! I can’t imagine how badly you hurt after a shift like that. Do you get chances to sit down at all during the day?
I am still working, 2 jobs as a matter of fact, but I can’t do the work I use to. I had to find jobs that allowed me to sit most of the time. I probably should have filed for SSD a long time ago, but I am a widow and there is no one to help me stay afloat while waiting for benefits.

Pamela

#36

Sylvia:

I think we’ve all got a pain in the a_ _! You are absolutely correct. No matter how bad it gets I would rather suffer thru this and watch my grandkids grow up than be painfree but unable to participate in my grandkid’s lives.

–
Benita

#37

Oh Benita, I had no idea! So sorry that happened to you. I am glad you didn’t feel attacked by me. I would never do that to anyone and can’t understand why anyone would. What a shame.

Pamela