I need to wake up from this nightmare

goofball · 11-24-2006, 10:25 PM

The pain started in the summer when my husband told me he was moving back to Seattle (from Honolulu) and told me he loved me but wasn't sure if he wanted me to follow him. We've had our ups and downs for years, even before we were married. Even though I was hurt, I knew that this was the only way to save our relationship. If we stayed together in Hawaii the hurt and pain of constant fighting would run our marriage into the ground. We went to intensive therapy and our therapist helped us work out "rules" to what she referred to as a healing separtion. We decided that he would leave at the end of September, and that we would see each other once a month, or at least every other month...and see where things go.

I was constantly sad, but I was also very hopeful. Then came August. I was sick as dog for days, coughing and having pain in my chest, and I couldn't figure out what was wrong with me. I went to the doctor on day 4 and she took an x-ray of my chest- my right lung had collapsed. I had minor surgery and was hospitalized for 5 days. None of the doctors could figure out what was wrong with me. They said it was called spontaneous pneumothorax.

Everything was going relatively okay until mid-september, when I suddenly felt the familiar chest pain again. DH and I went to the ER and they confirmed that my lung had collapsed again. This time I had major surgery to "glue" my lung to my chest wall so that it can't collapse again. They also did a battery of tests and found out that I have a extremely rare lung disease called Lymphangioleiomyomatosis (or LAM for short.) The disease is brutal. On top of having your lung collapse, your lungs fill with tumor-like growths which cause shortness of breath. Women with LAM usually die of LAM, either because of the disease itself or because their lung transplant was rejected by their bodies. And although there is research going on right now for a potential treatment, as of now there is no cure for LAM.

So now it's September, and on top of my husband leaving me at the end of the month, I was now coping with a possibly terminal illness.

After my diagnosis, we talked about delaying his departure, but decided to stick with the schedule. DH still feels guilt over leaving.

Fast forward to today...sometimes I think I'm having a breakdown. I'm OK sometimes, like right now as I type this, but I do have crying fits that can last for hours. If I'm not crying about my separation, I'm crying about my LAM. My work is suffering. And although I have family close by, I have few friends, and they are tired of hearing about my separation and feel akward talking about my disease. And I also strated binge eating trying to cure the pain. I was a machine. Finely tuned with the sole purpose of getting candy bars, french fries, slurpees, belgian waffles into my body. In the spring of this year I went from 170 to 135. I bounced back up to 160.

I'm trying to get my life back on track. I started going to the gym again. And I'm eating better. The hope is that if I look better on the outside, I'll feel better on the inside.

I saw DH in November and it made me so happy to see him. I feel like I'm addicted to him. He's my drug and I get high being around him. It seems the the distance is helping us heal. I'm going to Seattle again over the christmas and new years holidays. This trip is about the only thing that keeps me going.

I don't want my marriage to end and I don't want to die of LAM.

Thanks for letting me vent.

-Nikki

thindreams2reality · 11-24-2006, 11:09 PM

I'm sending lots of prayers and hugs your way.

Dawns40 · 11-25-2006, 07:00 AM

I'm so sorry you're hurting Nikki. Positive thoughts going out to you.

Lizzzee · 11-25-2006, 08:44 AM

Sorry your having such a terrible time Nikki. Hugs.

Edin · 11-25-2006, 09:22 AM

nikki, my heart goes out to you. pls know i will be praying. would you be better off going to live in seattle, even if it meant you having your own apt so you would be by your H for help and support? also, do you think this therapist is the best one for both of you? are there any local or on-line groups for LAM, or for those with serious health issues that could be a source of support and encouragement?

let us know how to help. we are here to listen, and here to encourage or just send you hugs and prayers. take good care, nikki. miracles happen. hugssssssss God bless

doodles · 11-25-2006, 02:32 PM

I'm so sorry.

angela233 · 11-25-2006, 04:22 PM

Nikki,

this does sound like a nightmare and I am impressed by how strong your words are!! You sound like an incredible woman to be facing so much. Have you heard about the "SECRET" on the playground? if not, go read the thread - it is an ebook that is being passed around. I don't know how to explain it - but it is one aspect of positive thinking. I think you are already doing so great with what you are dealing with, but it might help.

good luck and keep us updated.

angela

Edin · 11-26-2006, 07:51 PM

checking on you, nikki. sending hugs and prayers.

kayceez · 11-26-2006, 08:44 PM

Time & space is healing. If your husband needs space, give it to him. While he's working it out, you concentrate on yourself/

goofball · 11-26-2006, 10:36 PM

Thank you so much for your support and advice. I don't have many friends and this forum is such a great way to reach out to people.

Today my husband called me to tell me its snowing in seattle. I hope it snows when I go there for christmas. Snow on christmas, while being with the one i love most in the world, would be so nice.

Edin · 11-27-2006, 08:58 AM

well, we will just pray for snow!!! good to see you post, nikki !! have a blessed day! hugs

walkthebeach · 11-28-2006, 04:41 PM

Please come to the Secret thread on the playground. In the meantime, here is my affirmation for you: Every hand that touches Nikki is a healing hand; thank you Lord for Nikki's complete healing and good health; Nikki is safe and loved in this world; all is well.

Pamalee63 · 11-29-2006, 07:04 PM

I'll be keeping you in my thoughts as well.

SuzinBama · 12-08-2006, 02:02 PM

My prayers are with you, Nikki.

Edin · 12-16-2006, 08:51 PM

how are you, goofball?????? i think of you often!!!!! hugssssssssssss God bless

God makes a way, where there is "no way". i am believing HIM for deliverance for me in different areas....... but know you are so often in my thoughts and prayers.

Lynda99 · 12-17-2006, 06:54 PM

I'll give you more than a hug.

Last year, I went to Vanderbilt with someone getting a transplant. (Called your "support person") I stayed at a hotel with other transplant families. Lung, heart, liver, kidney, bone marrow. The transplant world is so advanced now, you wouldn't believe it. Treating for the horrible things that used to happen to people after transplants starts in the recovery room. It blew my mind. Everyone I met there with is still doing great, except for one guy who died before he got a heart.

Don't give up hope, at all.

angela233 · 12-17-2006, 07:31 PM

Nikki,

how are you?

angela

Edin · 12-23-2006, 09:24 PM

nikki, sending you hugs and prayers........thinking of you.

11-24-2006, 10:25 PM	#1
goofball Senior LCF Member Join Date: Apr 2006 Posts: 273 Gallery: goofball Stats: weight:165/153/135 size:10/8/6 WOE: atkins Start Date: 4/1/07	I need to wake up from this nightmare The pain started in the summer when my husband told me he was moving back to Seattle (from Honolulu) and told me he loved me but wasn't sure if he wanted me to follow him. We've had our ups and downs for years, even before we were married. Even though I was hurt, I knew that this was the only way to save our relationship. If we stayed together in Hawaii the hurt and pain of constant fighting would run our marriage into the ground. We went to intensive therapy and our therapist helped us work out "rules" to what she referred to as a healing separtion. We decided that he would leave at the end of September, and that we would see each other once a month, or at least every other month...and see where things go. I was constantly sad, but I was also very hopeful. Then came August. I was sick as dog for days, coughing and having pain in my chest, and I couldn't figure out what was wrong with me. I went to the doctor on day 4 and she took an x-ray of my chest- my right lung had collapsed. I had minor surgery and was hospitalized for 5 days. None of the doctors could figure out what was wrong with me. They said it was called spontaneous pneumothorax. Everything was going relatively okay until mid-september, when I suddenly felt the familiar chest pain again. DH and I went to the ER and they confirmed that my lung had collapsed again. This time I had major surgery to "glue" my lung to my chest wall so that it can't collapse again. They also did a battery of tests and found out that I have a extremely rare lung disease called Lymphangioleiomyomatosis (or LAM for short.) The disease is brutal. On top of having your lung collapse, your lungs fill with tumor-like growths which cause shortness of breath. Women with LAM usually die of LAM, either because of the disease itself or because their lung transplant was rejected by their bodies. And although there is research going on right now for a potential treatment, as of now there is no cure for LAM. So now it's September, and on top of my husband leaving me at the end of the month, I was now coping with a possibly terminal illness. After my diagnosis, we talked about delaying his departure, but decided to stick with the schedule. DH still feels guilt over leaving. Fast forward to today...sometimes I think I'm having a breakdown. I'm OK sometimes, like right now as I type this, but I do have crying fits that can last for hours. If I'm not crying about my separation, I'm crying about my LAM. My work is suffering. And although I have family close by, I have few friends, and they are tired of hearing about my separation and feel akward talking about my disease. And I also strated binge eating trying to cure the pain. I was a machine. Finely tuned with the sole purpose of getting candy bars, french fries, slurpees, belgian waffles into my body. In the spring of this year I went from 170 to 135. I bounced back up to 160. I'm trying to get my life back on track. I started going to the gym again. And I'm eating better. The hope is that if I look better on the outside, I'll feel better on the inside. I saw DH in November and it made me so happy to see him. I feel like I'm addicted to him. He's my drug and I get high being around him. It seems the the distance is helping us heal. I'm going to Seattle again over the christmas and new years holidays. This trip is about the only thing that keeps me going. I don't want my marriage to end and I don't want to die of LAM. Thanks for letting me vent. -Nikki

11-25-2006, 09:22 AM	#5
Edin Big Yapper!!!! Join Date: Nov 2006 Location: So. Calif Posts: 7,667 Gallery: Edin WOE: South Beach Start Date: November 2006	nikki, my heart goes out to you. pls know i will be praying. would you be better off going to live in seattle, even if it meant you having your own apt so you would be by your H for help and support? also, do you think this therapist is the best one for both of you? are there any local or on-line groups for LAM, or for those with serious health issues that could be a source of support and encouragement? let us know how to help. we are here to listen, and here to encourage or just send you hugs and prayers. take good care, nikki. miracles happen. hugssssssss God bless __________________ - Stephanie "A Man Is Only As Tall As The Sum Of His Deeds" "Be careful the environment you choose for it will shape you; be careful the friends you choose for you will become like them." - W. Clement Stone

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11-24-2006, 11:09 PM	#2
thindreams2reality MAJOR LCF POSTER! Join Date: Apr 2003 Posts: 1,778 Gallery: thindreams2reality	I'm sending lots of prayers and hugs your way.

11-25-2006, 07:00 AM	#3
Dawns40 Senior LCF Member Join Date: Jun 2004 Location: Colorado Posts: 431 Gallery: Dawns40 Stats: Uncomfortable/Confident/Comfortable WOE: Just LC Start Date: April 2004	I'm so sorry you're hurting Nikki. Positive thoughts going out to you.

11-25-2006, 08:44 AM	#4
Lizzzee Senior LCF Member Join Date: Aug 2006 Posts: 416 Gallery: Lizzzee Stats: ---/128/128 WOE: LC/Paleo	Sorry your having such a terrible time Nikki. Hugs.

11-25-2006, 02:32 PM	#6
doodles Way too much time on my hands! Join Date: Jun 2002 Location: Colts Country! Posts: 14,045 Gallery: doodles WOE: I don't even know at this point. Start Date: hmmm, what time is it now?	I'm so sorry.

11-25-2006, 04:22 PM	#7
angela233 MAJOR LCF POSTER! Join Date: Feb 2004 Location: SF bay area Posts: 2,136 Gallery: angela233 Stats: 142 5' tall WOE: atkins	Nikki, this does sound like a nightmare and I am impressed by how strong your words are!! You sound like an incredible woman to be facing so much. Have you heard about the "SECRET" on the playground? if not, go read the thread - it is an ebook that is being passed around. I don't know how to explain it - but it is one aspect of positive thinking. I think you are already doing so great with what you are dealing with, but it might help. good luck and keep us updated. angela

11-26-2006, 07:51 PM	#8
Edin Big Yapper!!!! Join Date: Nov 2006 Location: So. Calif Posts: 7,667 Gallery: Edin WOE: South Beach Start Date: November 2006	checking on you, nikki. sending hugs and prayers.

11-26-2006, 08:44 PM	#9
kayceez Junior LCF Member Join Date: Nov 2006 Posts: 2 Gallery: kayceez	Time & space is healing. If your husband needs space, give it to him. While he's working it out, you concentrate on yourself/

11-26-2006, 10:36 PM	#10
goofball Senior LCF Member Join Date: Apr 2006 Posts: 273 Gallery: goofball Stats: weight:165/153/135 size:10/8/6 WOE: atkins Start Date: 4/1/07	Thank you so much for your support and advice. I don't have many friends and this forum is such a great way to reach out to people. Today my husband called me to tell me its snowing in seattle. I hope it snows when I go there for christmas. Snow on christmas, while being with the one i love most in the world, would be so nice.

11-27-2006, 08:58 AM	#11
Edin Big Yapper!!!! Join Date: Nov 2006 Location: So. Calif Posts: 7,667 Gallery: Edin WOE: South Beach Start Date: November 2006	well, we will just pray for snow!!! good to see you post, nikki !! have a blessed day! hugs

11-28-2006, 04:41 PM	#12
walkthebeach MAJOR LCF POSTER! Join Date: May 2005 Location: St. Louis, MO Posts: 2,032 Gallery: walkthebeach Stats: 155/145.5/135 WOE: Low-carb, lower fat Start Date: Oct. 2002	Please come to the Secret thread on the playground. In the meantime, here is my affirmation for you: Every hand that touches Nikki is a healing hand; thank you Lord for Nikki's complete healing and good health; Nikki is safe and loved in this world; all is well.

11-29-2006, 07:04 PM	#13
Pamalee63 Very Gabby LCF Member!!! Join Date: Dec 2004 Location: Lubbock, TX Posts: 4,735 Gallery: Pamalee63 Stats: 246.5/240.8/175 (highest 260 in 1999) WOE: Atkins Start Date: 11/15/2008	I'll be keeping you in my thoughts as well.

12-08-2006, 02:02 PM	#14
SuzinBama Senior LCF Member Join Date: Mar 2004 Posts: 62 Gallery: SuzinBama WOE: Atkins Start Date: February 2004	My prayers are with you, Nikki.

12-16-2006, 08:51 PM	#15
Edin Big Yapper!!!! Join Date: Nov 2006 Location: So. Calif Posts: 7,667 Gallery: Edin WOE: South Beach Start Date: November 2006	how are you, goofball?????? i think of you often!!!!! hugssssssssssss God bless God makes a way, where there is "no way". i am believing HIM for deliverance for me in different areas....... but know you are so often in my thoughts and prayers.

12-17-2006, 06:54 PM	#16
Lynda99 MAJOR LCF POSTER! Join Date: Sep 2001 Location: Texas Posts: 2,645 Gallery: Lynda99	I'll give you more than a hug. Last year, I went to Vanderbilt with someone getting a transplant. (Called your "support person") I stayed at a hotel with other transplant families. Lung, heart, liver, kidney, bone marrow. The transplant world is so advanced now, you wouldn't believe it. Treating for the horrible things that used to happen to people after transplants starts in the recovery room. It blew my mind. Everyone I met there with is still doing great, except for one guy who died before he got a heart. Don't give up hope, at all.

12-17-2006, 07:31 PM	#17
angela233 MAJOR LCF POSTER! Join Date: Feb 2004 Location: SF bay area Posts: 2,136 Gallery: angela233 Stats: 142 5' tall WOE: atkins	Nikki, how are you? angela

12-23-2006, 09:24 PM	#18
Edin Big Yapper!!!! Join Date: Nov 2006 Location: So. Calif Posts: 7,667 Gallery: Edin WOE: South Beach Start Date: November 2006	nikki, sending you hugs and prayers........thinking of you.