Responding to 911s in between Remicade infusions

Prayer!!!!

I have not had the Ra as long as you being as that ive recently been diagnosed. Just wanted to let you know that i feel all the same feelings, i couldn't have worded it as well as you did. Thanks for this post! I hope some one can give you answers on that differnt feeling, cause i myself would like to know. Best of luck! and keep your head high!

A fellow Ra fighter

Kim

Hi Whitney,

Thank you for sharing your courageous story.  I have a lot of admiration and appreciation for the work done by paramedics.  Thank you for the work that you do that benefits so many people.

I have to wonder about the person who told you that you would be in a wheelchair within six months.  That's not a likely prognosis in the era of modern RA treatment.  And even if it was, who among us has a crystal ball that allows us to see into the future?  

About that feeling of loneliness and being different.  I'm in a little different place than you in terms of age and career.  I was diagnosed with RA in 2007 at the age of 51, and had already worked as an RN for over 25 years.  Still, the RA hit me hard, and I too had that feeling of being different, and lots of frustration over not being able to do things that others could do apparently without a thought.

But I can relate to you and your story and here is why.  When I was close to your age, I met and married a great guy and looked forward to raising a family with him.  I even selected nursing as a career because it fit in well with having children - lots of part time work was available.  So when we were all set - had a home, had enough money, etc... we got ready for that first child, only I didn't get pregnant.  And I didn't get pregnant.  And it seemed that all our friends were having their babies, and everyone was asking us when we were going to, and I'd say "we're trying!"

Long story short, after lots of expensive fertility treatment and endless cycles of hope and disappointment, it became apparent that we were not going to be able to have children.  And I GRIEVED!  I felt soooo different.  Young, apparently healthy, all ready for kids, and unable to do what everyone else around me did so easily and even when they didn't want to!   We were out of money and out of hope.

So I read, I looked for others who were in the same boat, and we would commiserate and cry, and then laugh and count our blessings for the things that we did have - mostly good health, jobs, husbands, homes, etc... And it went on, this cycle of grieving and celebrating, and gradually, the rawness of it eased.  I found other challenges and did things that I couldn't have done if I had had a family.  I went to graduate school, I became an avid and strong cyclist.  I'd say to myself, "I may not be able to have babies, but I can help save lives in the ICU and ride up mountains on my bike, and how many people can do that?"  It was a way of boosting up my self esteem and grieving my loss.  And over time it got easier, although I still sometimes feel wistful and wonder what our kids might have been like...  I'd learned to really enjoy other's children, who are now young adults.  So I guess I live a bit vicariously, although I know that I give and contribute to their lives as they give and contribute to mine.

RA has been a bit different.  I cannot compensate for the RA with phyical challenges in the same way because now it is my physical abilities that are the challenge.  Just walking, let alone riding my bike, is a momentous challenge on some days.  Other days it goes pretty well.  So for me the challenge of RA has been to learn to ride the wave.  I've also chosen an easier line of work, but I'm at a much different point in my career than you are, so that may not be applicable to you.

Even though I have RA and I never did have those longed for children, I don't feel that different than others these days.  I think that is because I have finally realized, that while the particulars may differ, we all face challenges that may not be apparent on the surface.  If you get to know people well enough, you'l find out that they are facing or have faced all sorts of difficult things - huge losses, huge challenges.  And those people who seem to have it all - if you get to know them, you'll find that they don't.  I think its called the human condition.

So my advice would be first of all to grieve what has happened, because it is a loss.  Get good at grief, because its not like you do it and then you're done.  But it does get easier.  Secondly, have compassion for yourself.  Pema Chodron writes beautifully about this. Find community, both on-line and locally.  It will help.  And lastly look for inspiration.  There are amazing people all around us.  Seek them out, ask them to share their stories.  One of my most inspiring people is Rachel Naomi Remen.  She is a medical doctor who has had a long and groundbreaking career despite developing severe and life-long automimmune disease as a young woman.

Blessings to you dear.  Keep us posted!   

Josephine

Wonderful post. Thanks Whitney.