huband let me know what it's like to be the LE spouse

Oh Cookie, it does impact us, and our loved ones.

My husband was away for his mother's headstone unveiling, and I did a lot of unpacking, but after moving a bookcase by myself ( what was I thinking???) I waited for him to move the window A/C.

I can only wonder what it feels like to be married to a woman has to wrap every night....

Just finished reading "The Emperor of All Maladies" and was struck by 1)how little oncologists knew/know about cancer and are just beginning to figure things out and 2) how the "sucess" model is someone who goes into a sustained remission and moves on. Well, LE doesn't let you move on.

My oncologist was quoted in it, and he doesn't like clinical work much, so I read his quote with great interest. The man who told another woman on these boards who asked how she'd know if the armidex was working "You'd get mets."

I totally digress.

Our new nornal is not normal, but then, whose really is? It does totally stink to be limited and to turn to our loved ones for help, and everyone burns out on caretaking at some point. And, home improvements are often testy times.

Huge hugs and sometimes it's good to let hiim express his frustration--but it sure must hurt, and you've always written about how wonderful he is.

LE rots, and it gets no respect. The Rodney Dangerfield of diseases. 

Kira

Steffief,

  LE gets the best of all of us. Can you get any more assistance from an LE therapist to treat your hand and arm? 

   Your mom loves you but unless you have LE and understand the daily toll it takes on you--typing one handed, wearing long sleeves in the heat, dealing with a hand that's not working well--it's hard to understand.

  I really hope you have a good LE therapist, or can get one, and they can get that hand under control. 

   http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

   You can still be grateful to be alive, yet hate having to deal with lymphedema. I'm always thinking about all the things that went wrong after my surgery and wondering if I could have escaped LE--it's hard to move on when you have to deal with it every day.

   Everyone on these boards understands how you feel.

    Ironically, moving in a pool can help lymphedema, but I can completely understand why you wouldn't want to be in a public pool right now.

   What can we do to help?

Kira

((((Cookie))))

Okay - I am probably going to get blasted for this BUT I'm going to say it anyway. 

I don't expect other people (even my mom to an extent) to understand what it's like to live with LE.  I do expect my husband to be understanding.  And I'm sorry, but it's not that d#mn big of a deal for him to have to take the trash out more, carry something for me, or even move a pot occasionally.  That's life, and that's what marriage is about.  I adore my DH and he is AWESOME with being supportive with the BC and now with LE, but I don't expect anything else.  I have done more than my share in the marriage dept. and we have been married for 20 years. 

Your husband needs to suck it up and put his big boy pants on.  So what that he has a wife with a bum arm?  I'm sure there are things about him that you make concessions/help out with.

I don't have a lot of patience with the 'this is hard on me' attitude (edited to say I mean my DH whining that LE is hard on him-and to his credit, he never has).  I try extra hard not to be a cry baby about le, but when I need help, I need help, dammit.  And that's just what marriage is about.  If my husband isn't on board with that he can hit the road.

Steffief, so sorry you are struggling...it's hard getting used to dressing with LE/no boobs I can tell you.  I am even going to the beach next week and will be wearing a swimsuit with no foobs - I'll be totally flat.  I will probably NOT wear my compression sleeve while I'm on the beach, but will definitely coat myself in sunscreen.  And I'm really looking forward to the trip, but have been a bit nervous about the swimsuit aspect.  Yes, I will look wierd, but big deal.  Have you seen some of the freakshows at the beach????  So I should fit right in. 

Hang in there - some days I do great with it and sometimes I don't...thank goodness for this site.

screw people who would judge you (or any of us) by how our arms or hands look.  They really don't care I'm convinced.

and if they do care they shouldn't.

and cookiegal.. you could always get a drag along suitcase ha ha..

Well, the spouse with active disability has changed in my house: my DH is down for the count with acute back pain.

I'm the able bodied spouse right now.

And what am I feeling: fear--because he hasn't been to work all week and he NEVER takes off work, and we don't have a firm diagnosis (I ratted him out to his doctor and he's seeing him right now), concern about a "new normal"--who is going to cut the grass, and I hate seeing him in pain.

Yes, I'm now the spouse who takes out the garbage, grocery shops, feeds the dog, had to help him get dressed the first day, doles out the pills.

I have to agree with Suzy: it's for better and worse, sickness and health, and we all do the best we can.

He's been hurting his back with moving heavy stuff, and the dog tunneled out of the fence, and he hefted rocks to block her in, and then I found him on the floor, unable to get up.

Kira 

Leah, I actually called his doctor and told him he had to take responsibility for the situation, and I was not going to be responsible for it--I had gotten him some muscle relaxants, and found the left over pain meds from my lumpectomy and gave him motrin and got him ice packs, and there was no plan.

So, I demanded that his doctor call him, and he did, and DH agreed to see him. He got a PT referral, and guess who arranged for him to see the PT tomorrow morning? (I have a group that knows me and I called them.)

Arghh, I hate to enable him, but I can't stand to be responsible for him either--this is the guy who never followed up with his doctor after a chest pain admission...And his doctor didn't make much of it today.

At least I got them in the same room. I call them double Dr. Denial  (DH is a dentist).

The plan is PT for now, and MRI if not better in 2 weeks. And continue the meds I started... 

Kira 

Leah, I can just feel the frustration in my post, it's just so hard. He's scared, I'm scared and we need a third party to help us--not that Dr. Denial was a huge help, but at least I feel like someone else is nominally in charge of the situation.

Did I mention he gets testy when he's in pain and upset?

I think they want it to magically go away, and going to the doctor interferes with that belief. Or something like that. 

And, just like us, feeling disabled is feeling diminshed and a bit betrayed by your body.

He just got back from his mother's unveiling: wonder if that set him up....

Kira

Interesting paragraph today from an article in the NLN e-newsletter about The Guilt of the Caregiver:

As you begin to read this article, you might find yourself wondering just what is this author talking about? The guilt? Well, I truly don't believe that I'm alone out there. I don't think that I'm the only one who feels the guilt that only a caregiver can feel.

I'm 28 years old, and I take care of my mother who is 58. She has stage three lymphedema. It's difficult for me to see her the way she is, especially since she was always a rock. She didn't gave in to being sick, always fought everything, and I never seen her cry. I'm angry now; I'm angry because this disease has taken my mother from me, and while she's still here physically, a good part of her has been taken away.

I feel guilty for being angry. I feel guilty for wishing that she was different. I'm jealous of my older sister, because my mother was able to play with her children, and now that I have my own one year old child, she cannot play with my son. She can hold him and verbally interact with him, but it's not the same. She can't run after him, or tickle him, or just be with him the way I know she wants to be with him.

I'm angry with myself for feeling this way, but I know that it's alright to feel this way. I know that I can feel angry and jealous, because I'm not jealous or angry with her, the person with lymphedema, but rather I'm angry with and jealous of the disease itself. Lymphedema is a selfish, cruel, ugly thing that threatens my mother everyday, daring her to take a faithful step outside. A bug bite, a scratch, a knick of anything can make her world a nightmare.

So yes, I do believe that guilt is the perfect title for this article.

By Crystal Bass
Type of Lymphedema: My mother suffers from Primary Lymphedema

Maybe that's helpful. I'm sure the feelings are more complex than that, but it's a good start on understanding.

Be well,
Binney
PS - For those unfamiliar with Primary LE, it's a congenital condition that can appear at birth or at any point in life, often in the teen years but also can show up in later adulthood. It can, and does, sometimes take years or even decades for Primary Lymphers to get a diagnosis and medical help -- and we thought WE had trouble getting a diagnosis!