Jim has been dealing with chronic pain for over a year now (actually we both have) ; he’s also been experiencing what he calls an “iron bar” feeling. He says he feels like there are iron bars under his skin, weighing him down, from head to toe. After a battery of tests and meeting with neurologists over the span of six months, we finally have an answer. Underneath Jim’s skin, all over his body, he has developed painful scar tissue. Guess what caused it? A psychotropic drug called Geodon, which he was on for over ten years. It is usually prescribed for bipolar patients. The neurologist acknowledged that he is in tremendous pain but refused to give him anything for it, because he’ll “have to be on tons of painkillers when he’s older.” Ugh. Poor guy.
I am still dealing with my own chronic pain. I have been diagnosed with fibromyalga and Sjogren’s syndrome. Fibro is widespread muscle pain and Sjogren’s is an autoimmune disease which causes severe pain and inflammation in the joints. There is no cure, and not much treatment for either one.
We’ve been talking off and on about trying for a rainbow baby since Grace died. With all of our health problems, I find myself wondering if it would be irresponsible of us to have another baby. Could we honestly raise a child like this? Our pain will only get worse as time goes on. Some days we can’t even get out of bed.
I try to imagine life with Grace, had she lived. We would give anything to have her here with us! We miss her more and more every day. Especially during family gatherings. I really feel her absence when in the company of the children in our families. It is so painful.
It seems like many of my friends and family members are pregnant right now. Some of them are other baby loss moms like me; they are pregnant with rainbow babies. While I do feel happy for them, I can’t help but feel jealous. And maybe a little scared for them too. Especially the women who think that once they pass the first trimester, the baby is safe. Nothing can be further from the truth! Unfortunately, there is never a guarantee that a baby will survive. No matter how much you want them, no matter how much you love them, you can still lose them.
We no longer feel Grace’s presence in our home. I haven’t seen any butterflies at all this year. Maybe she has moved on.
We’re never gonna stop thinking of her, or missing her, or loving her. She will always be the missing piece of our family puzzle.