What about your spouse?

Dercum's Disease
#1

My husband has gone fom deep concern in the beginning, to kind of being fed up, to hoping it would all just go away, to nagging me that if I’d just MOVE more I’d feel better, to now, where he’s most just scared. Every new development makes him crazy. “Did you call the doctor?” No, dear. What for?

He’s wonderfully supportive, waits on me hand and foot when I’m tired (almost every day!) and comes home most nights and cooks dinner if I haven’t already. He does all the laundry, and is generally a wonderful support.

Just curious about how your spouses are doing with all of this? (Or significant others, although I really dislike that term, so went for the more conservative “spouse.”)

me

#2

Sylvia:

That was so beautifully said that it made me cry as well as making me very envious of you two and your relationship. That’s what I’ve always wanted but could never find. How blessed you are to love each other that much!

Benita

#3

Hi Me,

My husband has run the gambit as well. He attends all my doctor visits with me and interjects answers to the doctors about me, etc. Yet at times at home he’s angry with me because I didn’t do something. I have a very hard time bending these days, so certain things I can no longer do, like lifting anything more than 20 lbs., bending, kneeling, mopping floors, lifting the laundry basket, etc. These things he helps with most of the time, but at other times he gets angry that I can’t do them and I’m asking him to help.

He made a comment the other day to his sister that came out as though I have been faking my symptoms. I was soooo shocked and hurt that he would even insinuate such a thing. I waited until we were back in the
truck and I burst into tears and then he was shocked. I repeated what he had said to his sister and what I’m sure she must have interpreted his meaning to be. He tried to deny it, but I told him if you think I’m
exaggerating my symptoms, then why do you help me at home, why don’t you not go with me to all my doctor appointments and clarify the disabling condition I’m in, why would you think I’m lying when you have personally seen as well as felt every tumor in my body? His response was he wasn’t thinking when he said what he said, and that he does believe my symptoms are real, but that it ticks him off sometimes that this has happened to me, and sometimes he wonders whether I really can’t do certain things or if I’m using the disease as an excuse! I just shook my head and cried. Needless to say we didn’t speak to each other the rest of the evening!

The next night when he came home from work he apologized, but now, I hate asking him to do anything for me, because I don’t want him to think I’m faking my pain. So, I’ve been trying to not ask him anymore, and
I’m trying to do things I wasn’t again, like mopping the floors (which I did and it put me out of commission the rest of that day and the next) and I had to sit with a heating pad on my backside (which meant we couldn’t do anything that weekend because I could barely walk). He wasn’t happy with me and said - why didn’t you wait for me to come home and I would have mopped that floor, and my response was - I don’t want you to ever think I’m being lazy or that I’m faking my pain. As you can see now, my pain is very real. He didn’t know what to say.

Long story, but I can understand what your feeling and your husband as well. I think it’s hard for others to comprehend just how much pain we are in. So anger and frustration are natural for them. Don’t be too
hard on him for it. It will take time for him to adjust to your new adjustments.

Take care and thanks for sharing your story.

Suzann A. Cheney

#4

Sorry, Suzann - I’m Cindy. :slight_smile:

And yes, I suppose the way our husbands feel is very normal and very understandable. I just want to kick his backside every now and again. :slight_smile:

A couple of weeks ago, he made a couple of cracks about me doing more, that I need to make myself MOVE, no matter how weak my legs are.

I’m a polymer clay artist, and to bake my stuff, it takes three trips to the oven - first to set it and warm it up, then to put the tile full of stuff in, and finally, to turn off the oven and remove the tile. I often have to rely on him to do one or more of those trips. But one day, I managed all three trips on my own. I was rather proud of myself.

When he came home from work, we were discussing dinner, and he went to turn the oven on for something and I said, “Hey, before you turn the oven on, I have a tray of stuff in there - make sure you take them out.”

He says, “SURE! You can get around to bake your clay but you can’t start dinner!”

DANG I was angry. I said, “I just can’t get it right with you!”

He really felt bad then, and then I felt bad for making him feel bad. :wink: We’ve been married for almost 33 years - we’re in this for the long haul, but I know he gets scared that I’m going to die next week or somehing.

Stupid disease anyway.

me< (aka Cindy)

#5

I am blessed with a really good husband who most of the time tries to be supportive and help me as much as he can. But he gets tired of me complaining about my pain or talking about something I have learned new about DD.

He doesn’t like that I take a lot of meds, but he doesn’t really go too far, I get depressed enough, if he gets mad, it makes me a nervous wreck because it upsets my youngest son so much. Then I start crying and I always cry when I am mad or hurt. Then I get mad because I am crying. So nobody wins.

I can tell he get aggrivated because there is nothing he can do to help me. And finances as we all know take a big hit when one isn’t working. He gets really anxious when we fall behind or cant repair somthing along those lines.

I really try not let that stuff upset me anymore. Worrying doesn’t solve anything and we are supposed to avoid stress! Right!!! But there are many times I would gladly kick his backside if I could kick that high!!!

#6

Hi Suzanne, Cindy and All,

I have been widowed since 1981 and have never remarried. I was quite pretty back then and had a long string of boyfriends, but my health was pretty bad even then, and I think it scared them all off.

I sometimes wish there was someone to help me with things and take some of the financial pressure off so I wouldn’t have to work so hard to survive, but I also know how hard it would be to maintain a good relationship under these circumstances.

Susanne, I know I would react exactly the way you have to having my credibility questioned by someone so close to me. I would try to do it myself too, no matter what the consequences, and pay the price. There is no bigger insult to me than to be called a hypochondriac or a slacker, whether or not those words are actually used or just inferred. Just try not to hurt yourself!

Pamela

#7

Hi Pamela,

I agree I can’t hurt myself to prove my point (I did try it and in the end it hurt both of us). It was just one of those things you do, to prove your point only it truly did hurt both of us. We’ve been married 21 years this August and he’s a wonderful supporter and an extremely hard worker. For him it’s hard because we have taken our home from a tar paper shack to one that we are both very proud of (it still needs more work but there is no money anymore).

I worked right along beside him, gutting, ripping, and rebuilding the entire home. This meant pulling out old sheetrock and insulation and wiring and plumbing throughout the entire home and rebuilding it all. I worked right along side of him thought every bit of it. I sheet rocked, mudded, sanded, painted, wall papered, helped with plumbing and wiring, etc. Now I’d be lucky to stand there and hand him the things he needs when we do tackle another project. I can still paint walls, but my arms get very tired and my back as well and I have to rest quite frequently.
I think for him it’s hard to understand where this vibrant energetic women went that he was married to. Hey I wonder too! I look at my body and want to cry. I’m so huge now and lumpy everywhere. I look like I’ve aged 20 years beyond what I should look and it doesn’t seem fair. Today, I’m having a really bad day at work and struggling to get through it. The temps have been below zero for the past 4 days and I can surely feel it. I get so wiped out when the weather changes this way. For the most part I’m still me inside, it’s just that my outside has changed so drastically and my physical abilities as well.

I know he didn’t mean what he said, but perhaps at that moment that’s how he felt and it came out verbally. I’m sure he’s been holding those comments back for a long time and they just escaped him. I know he didn’t mean it now, but I’m still hesitant to ask to much of him anymore. I’ll do what I can and that’s that. I’ve learned my lesson I think. I hope anyway! LOL

Well take care.

Suzann A. Cheney
Administrative Assistant
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-5625
Tel: (315) 268-6738
Fax: (315) 268-7994

#8

To everyone:

I think all men lack the nurturing gene - the one we didn’t know we had until we had children . . . that and, if they are like my husband, everything is ok until it impacts what he wants. Plus we have to remember that we are no longer the woman they married. We can’t be ourselves anymore, its too painful…

My husband does the laundry and grocery shopping but as far as cleaning the house, he’s not going to do it. I know the man too well.

#9

And who’s the lucky dog here??? I can only dream!

–
Benita

#10

An interesting topic…husbands…we have been married 41 years. John listens to me talk most of the time. He shows his love through all the little things he does for me everyday. When we first started dating, he took me to a doctor’s appointment. He massaged my feet, they were already hurting. I started having lumps in my rib cage the year after we were married. He knew from the start that I did not have good health.

The untreated rheumatic fever I had at age 6 had left me with many medical problems. I went from 105 pounds when we married to size 3x now, the 100 pounds some DD people have. John also has medical problems. He did not get glasses when he needed them and almost starved to death as an infant. He was a skeleton when he went to the orphanage where he grew up. We shared such horrible childhoods that we were lucky just to be alive. We both appreciated being loved and having a happy home so much that we are perfect for each other. We take care of each other. I did a lot the first 35 years we were married.

The disease slowly progressed with more nasty symptoms each year. I am very lucky to share life with John. He had taken over most of the house duties the last few years. He learned how to cook and do the dishes. I wrote down my recipes and he cooks them. He brings me coffee in the morning and sits in a chair by the bed and we talk every day. Children have always been the focus of our lives. We rejoice in our grandchildren. I always say I am having John cloned for other women. When I worked all of the hundreds of women in my building knew John.

They saw him bring me to work, help get my wheelchair out and help me through the doors. He always came to take me to lunch and picked me up at the door at night. He retired 2 years before me. I feel bad that I can’t cook much for him anymore. He gets out a lot to go to the store. He is at the library now getting another stack of books for me. We both wish we were healthy and able to do more physically, but I guess we have to accept our limitations and make the best of life.

We are happy if not healthy or wealthy. Right now we are having trouble affording all of our medicine. Obama says he will help us so he has our votes. I think mutual respect is the most important quality in a relationship, also mutual life goals and kindness. The only real problems are physical. As long as we are both alive we are very happy. John is my best friend. I value the support we give us each, as no one can really understand the extent of our pain if they do not have DD. Remember that I have had it for over 40 years so the “lumps” cover my body. I keep asking the group if they have this or that because it is so helpful to know others have the same medical issue’s , so many many different ones, that you feel like you are some kind of crazy person. Especially as so many of our doctors do not know about DD and don’t want to know!

It is really hard to believe that one disease can cause so many different symptoms but it helps to know that you are not alone. I wish our faces would turn blue so people could see we are truly very ill. I wish you all had the support of at least one person in your life. “All we need is love” to quote the Beetles!! : )

#11

Faron puts the teakettle on as soon as he gets up, and brings me tea in the morning. We talk all the while he’s getting ready for work. We’re in separate rooms now, separated by the bathroom, but we can speak in normal speaking voices and carry on a conversation, and that’s what we do.

He’s mostly wonderful. I guess that’s why, when he does say some stupid “man thing,” it hurts more.

I’m SO blessed in that I have two sisters living (of six of us) who shop for me and bring dinner once or twice a month, and nieces and nephews and a son who all do the same. They all stop and help with things like loading and unloading the dishwasher, knowing that it kills my lower back (I have lumps there - do you guys?) to do that.

Having said all of that, Faron is THE support. No one knows me like he does. No one’s seen what he’s seen or felt the tumors like he has, etc. And no one else’s life is so deeply affected as his is, too.

Gentle hugs to all of you!

me< (aka Cindy)

#12

I am lucky - i guess, in that my hubby and I had retired before Dercum’s came on me. Then I completely shattered my right knee, and they have tried to repair it through 3 surgeries without much success. That is why I am on disability now, I could not do work of any kind with my knee/foot.

Then along came Dercum’s. This summer, before I had a clue about Dercum’s, I said to my husband, why is it all of a sudden I can’t do even the simplest things without getting exhausted.

Answer-Dercums.

But I didnt know.

The tough thing for me right now is diet, or lack thereof of any kind of healthy diet, and my husbands inability to believe that this is permanent and progressive. He is always hoping I will “get better”.

See my rant about diet in a seperate post.

Right now I don’t have any lumps on my butt. Am I going to get them there too ? Do we all follow the same path?

Its a xanax day.

Carin//Calle/ in AZ

#13

Sylvia, your hubby sounds like a real gem. If they were all like him, I’d try to find one, lol.

Pamela

#14

My husband at times understands and leaves me alone but he doesnt sometimes as well…I always say maybe its him thats going thru menopause…He does understand however that I cant do what I used to do…And when I need to lay down he doesnt bother me and he keeps the grandkids from bothering me too…And the grandkids are understanding as well…Even Jacob who is two will come and pat my head and say he is taking me to the Dr…HAHA he has an ulterior motive …he wants me to be the one who gets the shots…Poor baby he has been ill as much as me…I guess Im a tad paranoid cuz I check him all the time for suspicious bumps…

#15

No Calle, we do not all follow the same path! Some of us are much worse off than others. Don’t assume what happens to one will happen to all. Just take each day as it comes and try not to worry about what hasn’t happened yet. Worry is bad for us!

Pamela

#16

Yes Cindy, I have huge tumors in my lower back. The first one I ever had (to my knowledge) is wrapped around my lumbar spine. I had no idea what it was for about 30 years. I thought I had a slipped or ruptured disk, but the doctors said no, so I just lived with it. I think its way to late to do anything about it now. I’m afraid I’d wind up paralyzed if I tried to have it removed.

Pamela

#17

I also have large lipomas on my lower spine…I am going next week for an xray so the Dr can just be sure but he says he already knows what it will show…This is just for his peace of mind…There are many lumps around my spine they have been there for a couple years…My husband is going so far as to even try some of the Vegan recipes I have found…Odd…he has always been a meat and potatoes man but tonite we are having baked fish and steamed veggies…Hope every one has a pain free weekend(at least we can pray for one…)

#18

Cindy & Pamela:

I understand what Pam was saying. Every doctor (around 11) that I was referred to and both PCPs all told me that due to the number of nerves running thru your spine it would be foolish to even contemplate having any tumor/nodule removed. One of the reasons was that the lipoma that was removed from my arm, tho encapsulated, had connective tissue running thru it. Should I have the ones next to my spine, on my tailbone and/or even deep in my buttocks removed, it would be almost a certainty that I would have, at the least, some degree of nerve damage and, at worst, they could have grown around ligaments, nerves, muscles and possibly even attached to disc material in between the vertebrae. So worst case was the possibility of disc damage or a degree of paralysis.

They just put their foot down and said that they would not have anything to do with it because it was too dangerous. I couldn’t even get them to refer me for another biopsy. I had a muscle biopsy at the same time that I had nodules biopsied and I have tons of DD growths around that site along with severe nerve damage. Plus a surgeon won’t see you unless your pcp or a specialist refers you for a consultation and I couldn’t even get them to refer me to talk to a surgeon.

–
Benita

#19

Exactly, Benita, I too have severe nerve damage in my leg from the full thickness (skin to muscle) biopsy I had. I also had so many complications from that surgery that I decided I wouldn’t have anymore except for life threatening situations.

Pamela

#20

I had a lap done 6/2005 because of severe pain in my abdomen and my GYN wanted to see if it was DD related or adhesions. It was adhesions but it put me into such a severe exacerbation that I was never able to go back to work.

My nodules started spreading like cancer and I didn’t even exit the flare until 18 mos later but I immediately entered another one that lasted a year. While I no longer have exacerbations that last that long I have string flares, as I call them - flare, out a few days or week, then back into flare and so on. The flares also seem to be getting worse as most of you can tell by how often I catch things over and over again. I have no immune system at all. I don’t know if it is only DD or if there is something else there that is being masked or that we are attributing it to DD when it is a combo of DD and something else.

Unfortunately, in the fall of 2006 I had skin cancer that I had to have removed and they had to take a large section of skin out. Of course it got infected afterwards and a host of aliens took up residence in the surrounding area and a few along the scar line. And that put me in an exacerbation that I was just coming out of in Nov when I started having so many problems with my teeth and the crud.

So down I went again and despite what has been said about corticosteroids and steroid use by us, my doctor said there was nothing else he could do to get me thru those times. So I’ve been getting injections and they’ve taken me from completely unbareable pain even with the Kadian and all my other meds, to being able to get my pain levels down to an 8 or 9 from what was probably something like 100 on a scale of 1-10. Other sites jumped on people for using steroids and that’s why I don’t go to any of those sites any longer. It’s like my doctor says - no one, at this point, knows what works for this condition and what doesn’t and until they find something that works for all people with this condition, he feels it is best to treat me symptomatically.

My blood pressure has gotten progressively higher with each flare and tho it goes down when I’m not so symptomatic, it has never gone back down to what it was before this condition started. When I’m in that much pain, I can’t think straight, I’m very irritable, in tears all the time and I beg for even a 1% relief of the pain. Unfortunately, if I’ve ever had any true thoughts of suicide, that’s when it has been and I’m not a coward nor weak but this condition can bring me to my knees. It’s like I always say, it can’t be graded on a scale and it makes me understand why animals who are hurting can chew off their own limbs. I get to the point that the pain is that severe, more severe than even going thru natural childbirth with labor pains in my back for 27 hours was and that was pretty much hell on earth. Let me reassure anyone worried about those fleeting thoughts - I would never do that to my family and friends. However, the thought of just 5 minutes without pain can lead you
to those thoughts.

When I am that weak I think of my granddaughters and my daughter and that gives me strength when the well is empty. That’s one reason I make sure that they spend the night at least one night a week because tho it may physically wear me out, emotionally and spiritually, they fill up that well again so I can draw on it during the days until they come back again. They make all the pain worth it, even if I have to endure it for 30 or even 50 more years. I want to be there for them. I want to see them grow up, graduations, weddings, births of their children, and all the little daily things too.

So my granddaughters are a gift and blessing to me more than normally so. They keep me living and involved with life.

Well, they are awake from their nap and hungry so I’ve got to get them up and fix their lunch. Then they are taking a bath or swimming as they say, in my large soaker tub once my daughter gets here.

–
Benita