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Having a very bad time at the moment..


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#1 Kiwi

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Posted 05 March 2008 - 02:43 PM

I don't usually post much, although I do read other peoples but lately things seem like they just couldn't get any worse - I'm sorry for complaining but I really need help to get through the days at the moment.
My father had a heartattack recently and then two days after my nana did too. She has since died and she was my rock in my life, I was very close to her. We have just cremated her and have had to sort out all of her belongings etc which was very emotional.
I have also had a lot of trouble with not getting my periods for a couple of years now - which I thought was due to taking the Cialis so I stopped taking it. Now I have lots of ulcers back which are very painful, especially the ones on my knuckles of my curled over hands. I spoke to a fertility person on the phone who basically told me that she thinks I am in menopause (and the Cialis was like a red herron) and it's unlikely I will ever have children. I'm 35 and the thought of not being able to have kids is devastating. She thinks it was due to the Cyclophosphamide I had for six months at the start of 2006 (even though I had Lucrin injections to protect my ovaries). Nobody told me at the time that I coiuld freeze my eggs and now I've lost that chance.
I am to do a blood test to test my follicle stimulating hormones (?) to see if I'm menopausal and the result of that will probably determine where I'm at.
I feel so sad and am trying to be hopeful but it is all too much to cope with. Is there anyone out there who has had Cyclo and/or FSH testing with positive results. I know a lot of you have children and it is a personal subject but I wouild be grateful for any advice or stories that can give me a little bit of hope. I am usually pretty good with being positive but at the moment I just can't believe that my life has become so hard and now potentially I may not even experience motherhood. If this is the case then I really feel like I have missed out on an important part of my life.
Thank you for listening, trying to keep my head above water... Megan
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#2 peanut

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Posted 05 March 2008 - 04:11 PM

Hey Megan,
I am 28. I was put on chemo/cytoxan two weeks after being diagnosed. There was no time to freeze my eggs or embroys so hopefully Depot Lupron protects my ovaries. Depot Lupron protects by putting my ovaries to sleep like early menopause and it works 90% of the time. My gyno says the only way I'll know if it worked for sure is if we try to have kids. Even still there's a 10% chance it didn't work and we are in no place to try to have children now.

In addition, I'll be getting a stem cell transplant soon which involves high dose chemo - double what I've been getting and 5-7 times in a week instead of once a month. It definitely effects the ovaries. Early, experimental research shows Depot Lupron may also protect against the effects of high Chemo/cytoxan but again no promises.

In the midst of all this I met with an embryo freezing doctor who didn't seem at all interested in helping me and if he did the whole process costs 160K out of pocket, insurance never covers this kinda stuff. I learned that egg freezing is more complicated and used if you don't have a partner, etc... blah, blah, blah...

So girl know you're not alone. I won't know if I can have children till after my transplant and after I've had so much cytoxan that I should glow in the dark. But when I hear kids scream in the grocery store I think geee I love my cat.

big hugs,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 Susannah

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Posted 05 March 2008 - 04:13 PM

Hello Megan
Oh my dear, I wish I had the right wisdom and words to say that would take all your pain away. All I have is a billion heart felt hugs for you right now. Im crying as I read.
We're all here for you!
Susannah x
(37 year old fellow kiwi with diffuse sclero)

#4 beverly

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Posted 05 March 2008 - 04:23 PM

Dear Kiwi,

My heart aches for you right now, know that everything in life happens for a reason and sometimes we don't see what lies ahead for us in the future. I do hope that you will receive some good news soon. Keep your head up, go ahead and cry. Than refocus all that energy into things you have control over.

Take care
Beverly

#5 Shelley Ensz

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Posted 05 March 2008 - 05:01 PM

Dear Kiwi,

My heart goes out to you and I hope things settle down a bit for you.

One silly, but helpful, thing I've learned is to not make a list of bad things. Rather, sort them out and take only one at a time, trying to find ways to move them into the "good things" list. For example, it's bad that your grandparent has passed away, no doubt about it, but it is good that they are no longer suffering and that they've set a fabulous example for you in life. Thus, as soon as we are able to accept that idea, they transition into the Good Things list.

Then I try to sort things out according to exactly what I can do about them. Sometimes the only recourse I have is to accept that life is not perfect, stuff happens, and I need to devise a fresh attitude about it, looking at the bright side. And there is always a bright side, once I get over my insistence on seeing the down side.

Rather like Peanut not being quite so regretful when she sees the screaming kids in the grocery store...we usually regret idealized versions of things (like, that new enormous house would have been so fabulous, rather than, how on earth would I have vacuumed the whole thing and lived to tell about it?).

I met my third husband (of 27 fabulous years!), the same day that my second husband moved out. That never would have happened if I'd been busy fretting over what a horrible thing just happened, rather than thinking, whenever one door closes another one always opens. Who'd think that could happen with such impeccable timing? But in addition to being a wonderful miracle of timing, it also had to do, an awful lot I think, into simple immediately accepting the things I could not change and really letting go of all my negative feelings about it, to allow room for more positive experiences in my life.

Of course, I'm always learning this same lesson, over and over again. But I seem to identify it when I notice that I've starting making a mental list...this bad thing happened, that bad thing happened, another bad thing happened... Then it's time for me to scratch that list and see how I can transition them to a Good Thing list.

I don't know what your Good Things are going to be out of all this, but I do look forward to hearing them. Meanwhile, I'm sending all sorts of good thoughts your way.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 Cheri

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Posted 05 March 2008 - 06:24 PM

Hi Megan,

I'm sorry you are going through so much right now. Sometimes when everything seems so wrong, it seems things will never be right again. But, trust me, your world will be okay again. Sometimes you just have to take one day at a time and look for that light at the end of the tunnel. It's okay to complain and cry though, I think that's the only way you can heal so you can get beyond this. I know everything will work out for you in just the way it should, the way that is perfect for you.

Lots of big hugs,

Cheri

#7 WestCoast1

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Posted 05 March 2008 - 06:30 PM

Hi Megan,

Thank you for sharing your story. As I read it, I really hear your pain, and I am so sorry for what you are going through right now! I can also hear that strength in your voice that is keeping you going each day. I am glad that you are doing further tests so that you can find out for sure what the fertility outcome is. I am so sorry to hear of your close relatives passing. I have also lost family close to me and the pain is undescribable...however, over time I feel like this person is always close by.

Take special care of yourself, and try not to let stress get the best of you during these tough times.

GENTLE HUGS &
*WestCoast*

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#8 bookworm

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Posted 05 March 2008 - 09:48 PM

Hi Megan,
I am sorry to hear what pain you are in right now. Sometimes it seems life dumps so much on us that we just can't get through it. I have sure been there!
I don't have any advice, but I want you to know that I am thinking of you, as are a bunch of others on this board. Feel free to vent any time you feel like it! Sometimes it just really helps! That's what we're here for!
One other thing: I'd find out if the Cialis causes infertility and if not, I'd certainly get back on it and heal those ulcers. I'm on it too and I just left it off for about three days to see if it was what was suddenly causing me headaches. (It wasn't!) After those few days off of it, my Raynauds has really gotten worse and I went back on the Cialis today.
Take care of yourself.

Mary in Texas

#9 PrincessB

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Posted 06 March 2008 - 02:33 AM

Hi Megan,

I'm 32 and I had a stem cell transplant with high-dose cyclophosphomide last summer. Like Peanut, I also had Lupron to put my ovaries to sleep for a while. My specialist asked me if I wanted to consider freezing some eggs, but was also concerned that the hormones they would have to give me to stimulate my ovaries would speed up my already-accelerating scleroderma, so I decided not to go ahead with it. To be honest, he didn't seem overly concerned about the risk of infertility. Not in a he-didn't-care way, but that the risk was very small. Of course, I won't know until I try to have a baby, but then no woman knows whether she's fertile until she tries really. If I were you, I'd try and put off these feelings until you've had the test. I know that's hard, but we have enough things to worry about in the here and now without tormenting yourself about a maybe.

I'll keep my fingers crossed for you (well, I would if I could cross them, ha ha!), B
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#10 Michelle2

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Posted 06 March 2008 - 06:53 AM

I'm sorry that your going thru a difficult time right now. Try to focus on your inner strengths. I hope things work out for you.
Take care and stay warm,

Michelle

#11 Delker

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Posted 06 March 2008 - 08:15 AM

Megan--

I'm so sorry it's all piling up.

The only thing I can offer right now is something you probably aren't ready to hear yet.
There are lots of ways to have children--but it doesn't always look the way you want it to look or thought it would.

I became a mom at 48.5, single using donor egg and donor sperm. It's not how I thought my life would happen and every step of the way there was a mourning for what I was giving up, acceptance that I still wanted to be a mother this way, and joy that there was still a way to do it. Didn't want to do it single, didn't want a unkown sperm donor, wanted my own eggs. I did give birth (something I wanted to experience) to an amazing boy 4 years ago. But alas, I believe the pregnancy released the Scleroderma which until then had been farily subdued. So now I am trying to live with knowing that I'm not going to be the mom I thought---bike riding, hiking and running with my child---I can barely make it down the block without getting out of breath.

So--mourn the loss---but explore the options---adoption-domestic, international, surrogate moms, whatever it takes until you can no longer compromise----and have a baby and love it and be well.

Dre

#12 kellyA

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Posted 06 March 2008 - 11:51 AM

Hello Megan,

I can totally relate to you, I lost my mom in October and 1 week later I lost my grandmother, I've been on a emotional rollercoster since. Anyway, I just finished my 8th cytoxian treatment (my periods stopped shortly after my 2nd treatment) it threw me int menopause (im 42) ANYWAY the dr. said that I may get it back after im done my treatments. Make sure you see a good fertility specialist, and if you want kids there are plenty of ways to get pregnant with hormones.

#13 Kiwi

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Posted 13 March 2008 - 08:50 AM

Thank you all for your kind words.
I still haven't done the FSH test - I'm waiting till I get a period to do it as this is when it's most accurate. unfortunately I could be waiting a while.
I'm pretty sure I'm getting some major hot flushes as well so I'm not actually that hopeful....
Still trying to get over my Nana dying and am trying to get motivated but I just can't be bothered doing anything! I'm just not interested in finding work or hobbies.
It is such a horrible feeling to watch youir condition get worse. Legs are starting to harden. Thought after 3 years it might plateau...
I know there are options for having children (probably more in the US) but I am a single female on a Benefit - don't think I qualify!!!
Still struggling, Megan
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#14 Kiwi

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Posted 13 March 2008 - 02:14 PM

Kelly - good luck I have been exactly where you're at. They reassured me as well and who knows - miracles happen all the time right? It would be interesting to have this conversation in 5 years time!

Peanut - wow, you are a trooper!
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement