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Having rough couple of weeks


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#1 debonair susie

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Posted 10 June 2008 - 04:12 AM

Hi, my cyber friends...

I apologize in advance, for the tone of this message.

I've been putting this off because I wanted to have a definitive answer before I posted. But, the piles getting higher and I can't share some of this on a local level...you'll understand, I'm sure.

As you may/may not know, my hubby was diagnosed withCOPD withasthma component and chronic bronchitis in 1999. For quite some time, he just couldn't seem to get a handle on this. However, in January of 2006, he got so sick that he had to be hospitalized for 3 days, wehre he was treated aggressively and felt better than he had since before he got sick.

Yet, since November, he's not done well... no matter what kind of treatment program he's been on, he just can't get back on track.
Moving back "home" has enabled him to re-establish withhis original pulmo, which is great in itself...he's a great dr and hubby really likes him. The last little while, he's been seeing him every two weeks...having seen him 3 times.
He and I have always gone to each other's app'ts, but I've been caring for my youngest grandson because his full-time sitter went to working at a greenhouse, two months ago.
When hubby had his last app't, he didn't want me to take Brayden out because it was rainy/cold. I really didn't want him going alone...we ALWAYS go together... Plus, that day, he was unusually uneasy and had a feeling of dread. But, he was insistent that I stay home with4 mo-old Brayden...so I did.

When he got home, he was especially quiet. I just watched him and waited for him to talk. He told me his PFT showed the FEV improved by 8%, but the numbers the pulmo was concerned about...went down more. He told me he and the dr had a good talk, but that the dr told him that he isn't where he hoped he would be; the dr told him he may set up a lung scan because he feels he may have lung cancer.

I've always wondered how others dealt withhearing something like that... now we know, first-hand. For the rest of the day, we didn't talk anymore about it... just enjoyed the baby, knowing we would be talking about it that night.
My hubby didn't seem surprized at what his dr said and seems resigned, if it turns out to be lung cancer. At this juncture, there are just too many things pointing that way: He also has prostate cancer (dx'd a few years ago). He chose watchful waiting because the doctors felt his COPD would be the more fatal of the two, plus surgery wasn't/isn't even an option, due to the afore-mentioned. Though the PSA isn't 100% reliable, the symptoms haven't been an issue for him;he has another PSA scheduled, along withdr app't at the VA today.
His pulmo dr also had him get a bone scan on the 6th..he was wanting to cancel it, but I didn't let him, especially in view of this recent information;w/prostate cancer, if it spreads, it can go into the bone.
On Thursday, he sees his pulmo... I will have Brayden, but I'm going withhim anyway.
Hubby doesn't want to say anything to his kids until we know for sure. In the meantime, I've no one to talk to. I did tell my son because I had been crying that night, when he called me... He could hear it. I also told my youngest brother's wife because she and I are really close and she knew hubby isn't doing well. I let them know we don't want others to know yet and they're respecting that.
Between you, me and the fencepost, though...I really think hubby's kids already suspect, because they know he hasn't been well. With their mom very sick as well, I don't know how I'm going to handle all of this, w/the kids and grands... should it turn out to be lung cancer. They will absolutely fall apart.

More sadness...my kids paternal grandpa passed away early Sunday a m. He and I had a good kinship...my birthday same day as his, sending each other birthday cards/holiday cards.
We even bet on (local) college games! The last time we bet, I lost, but he made me a plaque, routered the letters of my name into the wood and filled the routered out areas withdimes! We always enjoyed ribbing one another...I'm going to miss him and I'm going to miss that.
Hubby and I wanted desparately, to attend the funeral...but are unable to because we'll be at hubby's app't and I'll have my son's little Brayden....

I see now, how things happen for a reason.

Thank you for your time reading this...it was therapeutic for me to put this down in "black & white".

I'm sending out {{{{{{{Huge Cyber Hugs}}}}}}}} to all of you!
Love, Susie
Special Hugs,

Susie Kraft
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#2 Sweet

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Posted 10 June 2008 - 05:41 AM

Oh Susie,



I am a little overwhelmed just reading your post, so I can only imagine how you and your husband must be feeling. I am so sorry, this is so much to deal with all at once, and you are right it certainly is piling it up.



I'm glad that you were able to get it all off your chest and onto our shoulders. We will help carry this load for you. Sharing feelings has a way of helping us cope, writing things down in black and white as you said really helps. There are books written about "journaling" and how theraputic it can be. So my advice to you is to write to us each and everyday about this topic. Doesn't even need to be definitive test results etc, but just how things "feel" for the day.



We are here for you, and I am sending warm, positive, hopeful vibes your way.

Love you much!!!
Warm and gentle hugs,

Pamela
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#3 debonair susie

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Posted 10 June 2008 - 06:50 AM

Than you so much for your very special message, Pam...my eyes really welled up at your comforting words.

I like the idea of the journaling part and think that's a really good idea....thank you for that.

This a m, we both awoke really early, so we got up and have just been getting some bookwork done, etc. While at my pc, I looked over at him and asked what he was doing..."Filling out my Five wishes, but I'm stuck on this one". I went and sat down beside him and he said, "I've got you as my healthcare agent, but I don't know who else to put down. I'm not sure I want to put down any of the kids". We sat there and thought and I finally suggested his very special friend of 47 years...Gary. Hubby was very comfortable withthat suggestion and put it down.

We have had PoAs and DPoAs drawn up by our attorney... we did that when we had the papers drawn up for me to be her PoA and DPoA. However, it states if one chooses to use the Five Wishes, then it would replace the DPoA... I don't know how I feel about that.

Well, it's only a couple of hours before hubby's app't at the VA Clinic.

Again Sweet, your caring means a great deal to me especially during this difficult time.

Loving Hugs,
Susie
Special Hugs,

Susie Kraft
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#4 Peggy

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Posted 10 June 2008 - 07:15 AM

I am so sorry for what you are going through. I can't imagine how hard it must be. The best thing you can do is to be there for him and like you are doing, go to all of the appointments so you have 2 sets of ears. My heart goes out to you and I am here for you. Life throws us these curves and we wonder just how we are to handle them. All you can do is just try to get through one day at a time. You have the benefit of great doctors and more important you have each other.

Warm, big hug to you,

Peggy

#5 Sweet

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Posted 10 June 2008 - 07:35 AM

Hi Susie,



I hope your hubby doesn't need to use his DPA or his five wishes. Actually I've never heard of "five wishes" before. What is that about? Take one day at a time, or one minute at a time, whichever is necessary.



Journaling has helped me through some very difficult times in my life. My dad died when he was only 49, my mom died at age 59, my older brother died at age 47. Not to mention all of the emotional roller coasters your kids can put you through. I'm a survivor though, so I press forward.



I didn't used to deal with my feeling well. I "stuffed" everything and have been a "A" type personality. I often wonder if that is why my body rebelled, broke down and got sick.... whose to know. Anyway, my point is, I now know how important it is to "feel" what we are feeling, process it, and move on. Journaling helps with that for me.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 jefa

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Posted 10 June 2008 - 07:35 AM

Hi, Susie. This is really a load for you and your husband to handle. I don't have anything practical to add, but just wanted to give you a big hug, sweetie.
Warm wishes,
Jefa

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#7 Sheryl

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Posted 10 June 2008 - 02:27 PM

Susie, you are worried about what the kids will think and feel. Thats what mothers do best. Worry for everyone else. I am so sorry to hear that more things have been added to your plate. With taking care of your mom and yourself and hubby, I don't know how you are doing it. I guess you are also feeling bad that the two of you can't make it to your X father-inlaws funeral. So many things can happen to change our plans. It sounds like Eddy is planning for the worst. Hopefully, he won't hear the worst news. I sure hope the two of you have many happy years together. Please keep us posted on how he's doing. Let him know we are asking about his welfare also. Enjoy all the special moments you are getting with your grandson. Write when you can.
Strength and Warmth,
Sheryl

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#8 Clementine

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Posted 10 June 2008 - 03:43 PM

Susie

Hugs to you, Eddy and your family. You really have too much going on right now. My thoughts are with you and your family. I really loved what Sweet said about us helping you carry the load. Please unload on us, get it all out. I wish I could reach out and hug you and Eddy right now. I hope you all get through this in the most gentle way possible. I really hope you get some good news.
Love,
Jen

#9 barefut

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Posted 10 June 2008 - 04:03 PM

Susie,

My thoughts are with you and your family.

#10 Peggy

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Posted 11 June 2008 - 03:56 AM

I thought I would answer the "Five Wishes" question. This is a form that can replace what they call a Health Care Directive. It's just a different form out there that allows a person to put down on paper their health care decisons on what they want and don't want for treatment. Some people use this form and some people do what they call a Health Care Power of Attorney. By the way, each and every one of us should have one of these forms done and filled out especially with what we are going through. This allows the health decisions to be made by a family member and your own wishes are carried out. Once this has been completed, signed, and witnessed, then copies should be provided to your health care provider and to whomever you listed as your health care person to take care of your wishes.

Hope this helps.

Warm hugs,

Peggy