Responding to 911s in between Remicade infusions

By Bug453 Tuesday, August 25, 2009

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Hello, My name is Whitney, I am a paramedic living in Montana. I was diagnosed on June 18th 2008 (the three year anniversery of becoming an EMT, one year anniversery of becoming a paramedic) i was 21 years old. I chose to fight, and put on a strong mask never telling of my pain, or my treatment to co-workers or family. I found when telling them of the diagnosis, and prognosis i ended up counciling them more than they provided support for me. I was told that within six months i would have to quit field work, and probably would be looking at a wheelchair and complete dependence. I chose to fight, and fight hard.

Over a year later and many drugs later i have found the combination that seems to be working. However the emotional struggles tend to be just as strong. I am a quite person and try to keep my struggles to my own. My ambulance partner knows when i hurt, because i can't open the medication bottles, or even the doors into the stations, but he silently helps, offering more support than anyone could ever say. I am walking, I am running and swimming and hiking and traveling. I stretch through the pain, and have changed much of my lifestyle in order to maintain mobility and general health. Working with chronically and acutely sick people i take great measures to keep myself safe through wearing masks and all body substance isolation equipment i can.

I have met with others, i provide support for older friends struggling with similar pains, i try to always smile. But deep down i still feel the innate lonely that accompanies the disease. Giving up alcohol and careless- early twenties activities i have grown away from many friends, and have built a shield around myself for protection when attempting to date.

My job provides alot of acceptance, watching people fight and struggle for their lives every night (i work the night shifts) and find the acceptance that settles shortly before death i am reminded life is what we make it, and i am proud of my strong fighting attitude. I know having this disease is teaching me life lessons that many may never learn.

However the hardest part i have found is not the pain, is not the treatment, or mild deformities that sneak in, its not the knee drainings, or physical therapy, or vomitting, or doc appt. the hardest part is feeling different, forever and for always. With the new treatment i look like a normal 22 year old girl, i am in shape, i am thin, i have friends, i laugh and smile and travel, but deep down i feel different.

The disease has impacted me in many aspects, growing up even more so than my already mature lifestyle and career required, and choosing to take the opprotunities that present now, rather than later. In Jan of this year i traveled to Guatemala for a two week childrens medical outreach and plan to travel to Thailand this coming jan for three weeks for a similar outreach. I am truly lucky to have the health care insurance to seek treatment, and a job to remind me of how precious life is. For those things i am very humbled.

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Comments (5) | Add comment

Country Girl

8/25/09 1:39pm

Prayer!!!!

l3true2u

8/26/09 1:26am

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

Josephine

8/26/09 2:44pm

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

Bug453

8/26/09 8:47pm

thank you so much for your kind words....to clarify the doc that told me the 6 months prognosis is no longer working, he was an orthopod and has been let go- i should have added that to the orginal text for better clarification- for that i apologize.

Your words have been so kind and encouraging i can not thank you enough!

Kelly Young

8/27/09 10:55am

Wonderful post. Thanks Whitney.

Responding to 911s in between Remicade infusions

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