What is the biggest problem you and y... - Partners for Behc...
What is the biggest problem you and your partner are facing as a result of Behcet's?
I rarely show this side of myself....
The constant economical strain.... I receive a nice amount of disability every month, but it still isn't even enough to cover my healthcare expenses. Then, add on top of that that I was the primary bread winner and made three times as much as my husband (on a bad year) with a career that had benefits and a near limitless earning potential and all of that is gone. He was self-employed doing something he was passionate about which is worth far more than money can ever buy, but when I got sick he had to switch jobs after twenty years in the same industry at forty. It has been a struggle to keep him employed due to depression. He has been gainfully employed two of the seven years of our marriage.
The other factor is that we lost a child and I came out of remission right as we were having our big church wedding. Two months after we got home from the honeymoon, he took me to the hospital and I was there two years. I can no longer have children and the terrible thing is that we need MONEY to adopt. If I was well and we were "irresponsible", public assistance programs of all kinds would step in, but we can't even get a foster child.
Our hearts ache for children. Something is missing. My husband has even told me that he would "work harder at getting a job, do whatever it takes, even if it means working two or three jobs" to support us if we had a kid. It makes me feel so inadequate - like I'm not enough. I know that babies never fix problems, but I would love to give my husband the chance to rise to the occasion. Unfortunately, it would be at an extremely high price if he failed.
The other thing is that I get the feeling now that even though he said he wanted me to be a stay at home mom and I told him that was the desire of my heart, that I would work around the children's schedules. I think he planned on being Mr. Mom or having his mother watch our child(ren).
No one ever asks us if we are going to have kids anymore. His family knows our desires, but they have given up on us and are begging my husband for toys he set away for his child over 30 years ago and they won't set aside the nursery they are breaking down because they believe they have had their last grandchild.
Oh, my major family challenge is that his delusional family thinks I married him for money. The first time they threw that in my face, I asked my FIL why my husband had to borrow 50K from my family and an additional 10K in the last six months if he was "made of money and the catch he claimed he was". He looked at my husband and said, "Are you going to let her talk to you like that?" When I was pregnant and sick with their grandbaby, he told my husband that, he "needed to take me to work and sit on me if that's what it took". I have gone over to their house, been so nice and lady-like, sat next to him at the table, and tried to engage my FIL in conversation and he continued to ignore me until my MIL put a stop to it for appearances.
I was a smart, beautiful, young woman with the world at my fingertips. I have had several long-term relationships and dated quite a bit and ALL of the parents adored me - some more than my suitors. I have even had parents call and conspire to get me with their sons because they think so highly of me after they have known me for YEARS and I have even been married twice (#1 common law because we lived together and he bailed due to BD and #2 was "in the closet" but worked for a ministry so unbeknownst to me I was part of his plan). Their parents even like me! I don't understand why, out of all of the parents that I have met, my husband's are the ones that hate me.
Hell, I started to miscarry at their house and they didn't even blink while Todd rushed me out the door and to the hospital. It was too late.... Unfortunately, five years later, the same thing happened to his sister in between two healthy pregnancies and the entire family spoke in a low register for about six weeks. WTF!?! Why does our child mean less than theirs? Because I am the mom? It hurts. It would be so easy to let go because I am one of the most forgiving people in the world, but they still bring it up and treat me badly. When his little sister gave her a positive pregnancy test for Mother's Day, she put it in a scrapbook. Guess what happened to ours? She threw ours away. My mom still displays hers as a memorial to her last granddaughter. I have miscarried eight times and we decided eight is enough... even if life was seemingly perfect and beautiful tomorrow... eight angels in Heaven is enough.