Im pregnant and have an unknown autoimmune disorder. A rant!! - Immune Disorders Message Board

shenx08 · 05-22-2008, 12:34 PM

Im 21 and have suffered from I was a baby with joint pain with no physical indication of artheritis apart from a bit of swelling well a lot. I also suffer from flue like symptoms, fatigue and numerous other things. I have a medical history the length of your arm and I know that it runs in my family as my younger sister has less severe symtoms similar to mine and my auntie has a very similar condition to me and our symptoms are identical, she has been diagnosed with lupis and fibromyalga. I have not got a definate diagnosis as the lupis test was neg, but i have a near positive diagnosis of familial hibernian fever, if anyone has heard of it. It took years for doctors to take me seriously and my trust in the health profession has been severely damaged as due to there lack of education or not wanting to believe me i nearly died on two different occassions i also suffered with glandular fever for a few months before the doctors diagnosed what was wrong as they were putting it down to school itis.

However since i fell pregnant i have never felt healthier, it wasnt the best news at the start and didnt think much about the future but now im going on 24 weeks and am trying to not get stressed about anything however i dont want to express my concerns to my family and boyfriend. I dont know how i will cope after the baby is born, I dont have the full support of my boyfriend so I have decided to move closer to my family and he has decided not to come with me. I dont want to rely fully on my mother, i also know that she might get too over powering, i want my own independance but know that when i ahve the child i will be sicker than i ever have been before. I also know that my child is at a greater risk of being very ill. Im feeling very isolated (my own fault). If i tell my mum how im feeling she will worry about me and if i tell my boyfriend he wil only shrug me off as he has no idea as to how sick i can get.

I have let myself fall into depression in the past because i have got down about my illness and well basically felt sorry for myself, i have never met anyone else that i can talk to about this as they havnt been through a similar experience. I dont like people fussing over me but i need help a times and i dont like asking for it. I think im basically on here for a rant and maybe possibly to see if anyone else has been in this place before and maybe to tell me how thay got out off their rut. Im basically more scared than i ever have been and dont know were to turn to, I have so much bad thoughts running through my head that i am forgetting to look at the positives. I have always had a positive outlook on life well on the main i have and i always try to put on a brave face and a smile no matter how much pain i am in, i am afraid that my child will be as sick as i was as a baby and also worried that i physically wont be able to take care of him/her. I also know from experience that i am not going to have the support from the community docs and nurses.

So just a comment or even a counter-rant to snap me out of this

Bamboo · 06-01-2008, 02:41 PM

I'm sorry that no one who can help has posted yet, but please try to be patient since this is a bulletin board most of us visit when we can find time.

(I haven't been in your position. Unfortunately, my auto-immune disorder, which couldn't be pegged definitely but is similar to Lupus, prevented me from having children. I had four miscarriages but wasn't diagnosed for almost 14 years. I taught middle school and high school students for many years, so I have heard of young women in similar situations.)

I don't know what your town is like or what services are available. You are wise to be clear about your relationship with your mom. I'll propose to you that you could benefit from an older mom who can be your "coach". Better yet if your coach has an immune disorder or some other physical ailment and has been successful. A mom like that could be found through community agencies (United Way has contact with many agencies), religious organizations or houses of worship. You'll want to start looking now for such a coach. It'll mean you will need to think about your physical needs and your child's, but also think about your own approach to parenting. The library will have lots of books on this, but I bet you've been thinking about this yourself.

You'll need to listen carefully to your possible coach's approach too, to make sure you're on the same page.

I hope this will give you an idea for a positive path to take, whether it's based on my suggestions or on your own. Please let us know how you and your baby are doing!

Ann

P.S.- I just read your profile and see that you're in Ireland. Most of what I wrote would work for you, but "United Way" is an organization that is made up of organizations which provide services such as blood banks, help for people with disabilities, etc. I don't know the equivalent where you live, but that needed clarifying.