A.S. Face 0113: Tyler Hyder

113

The working life of a hospital nurse can be extremely busy, stressful and complex. Making life or death decisions goes part and parcel with a caring heart and gentle touch. I thrived on it. Caring for a patient was my calling. Along came AS and that chapter in my life closed forever.

I was 32, a mother of two daughters, ages 5 and 3 years. My husband, daughters and I had just moved from our lives on the farm to a city; I had a new job and we knew absolutely no one in town. Needless to say, there was no support system on which we could rely. My diagnosis came relatively quickly, but hearing the news shocked me into denial. The issues that led me to seek medical attention got worse instead of better. Every morning I awoke with low back pain. Getting out of bed was excruciating because my heels were so painful that standing on them made me want to cry. In fact, there were many mornings when I did just that.

Originally I thought the heel pain was from a stone bruise, as I was nearly always barefoot at home. I reasoned that the persistent low back pain was due to lifting heavy patients or bending over a patient’s bed to perform wound care or other nursing task. After a period of about six months with no improvements in either the back or heel pain I began to think there was something else wrong. In addition to the pain, I felt exhausted all the time, but easily dismissed that as a hectic work schedule and the challenges of having recently moved.

I remember the day I went to see the doctor. He was an internist; one of the physicians with whom I had become acquainted at the hospital. After asking numerous questions and completing an exam, he said he felt he knew what was going on with me, but wanted to get an x-ray of my sacroiliac joints and draw some blood for testing. Once the x-ray was completed, I was directed back into the exam room. Within moments the doctor arrived, a radiograph in hand. He said, “Mrs. Hyder, I am quite certain I know what is happening. I believe you have a condition known as ankylosing spondylitis.” That moment was the first time I had ever heard those two words. For the next few seconds my mind was flooded with questions. I felt scared and alone, relieved that I had a diagnosis, yet perplexed as to why this happened to me. I wouldn’t be able to answer that particular question for almost 15 years.

Throughout the next few months I was prescribed a variety of medications. Some didn’t work, others made me physically ill. Still I continued to work and live the life of any normal woman with a husband and children. Although the pain and exhaustion persisted, I began to deny the fact that I had AS. My husband was having difficulty finding a job in his field of expertise, and money was tight. I began to feel isolated and weary. My girls understood that something was wrong with Mommy, but because they were so young, they could not understand. I didn’t want them to feel as though they had a Mommy that couldn’t measure up, so I redoubled my efforts to make everything appear unchanged. I had always been energetic, with a positive, ebullient nature and to the world, that didn’t change. But inside, I was beginning to fall apart.

Seriously, I don’t know what I would have done without my husband. He was always by my side, ready to do anything he could to help make my life easier and more comfortable. It was he who first introduced the idea that we should consider moving closer to my family so I could have some help and support from them as I tried to get this strange and hurtful disease under control. Feeling as though I could take no more, we made arrangements to uproot our lives once again. We packed our belongings, and our little family journeyed to the Seattle area to be near my family.

The years since then have been filled with highs and lows. The disease continued to progress to the point where I could no longer ignore it and still go on living. It was then that I finally was able to accept AS as part of my life. Having done that, I set out to learn everything I could about the disease. I wanted to have the ability to control AS and not let AS control me. I found a rheumatologist, and we worked on a treatment program, constantly refining it until we found the best plan for me. I was then able to go back to work, but my days as a hospital nurse were over. I could no longer handle being on my feet for 9 or 10 hours a day. So I had to rethink my career, and come up with something I was able to do.

In 1995 I became involved with supporting others with AS. While I no longer felt alone, I knew there were other people who may be feeling that way. I became part of a small group of people involved with forming an online support group for people with AS. Family members were also encouraged to join our group, and since its inception to the present day it is one of the largest and longest running support groups on the Web.

Today, I am no longer able to work full time, but I still maintain my nursing license…just in case. My children are grown; I have three grandchildren. Now I write. And I am still living with AS – a face of Ankylosing Spondylitis — even after all these years.

Redmond, Washington United States of America


12 Responses to “A.S. Face 0113: Tyler Hyder”

  1. Dear Tyler,
    Thank you so much for being a part of my vision.
    SIncerely Cookie

  2. Thank you for sharing your story. I am 26 years old with three young children and a nursing student. Becoming an RN has been my ultimate goal since getting my CNA license and I am determined to graduate nursing school. I am going to attempt to work as an RN, but like you, I fear the pain of being on my feet for several hours a day. I don’t know if I can manage a nursing career, but I am determined to at least finish school to say I did. To be this close and give up now seems ridiculous. The AS has been a scary diagnosis to be labeled with, but I am learning to cope and I thank you and others for sharing your story. God Bless.

  3. Your story is very familiar – I am a mother and a retail store manager. Accepting my physical limitations has been difficult at best. Where is your support group? Thank you for sharing your story. This project reminds each of us that we are not alone.

    • Joanna, thank you. My support group is online. A small group of us started the group in 1995 and have been actively supporting other ASers since then. The group is called Spondyville (www.spondyville.com). I am also part of several other, newer groups: ASAP, GASP, Faces of AS, the SAA and others. Each group approaches support a little differently, some with humor, some with a great deal of empathy, others with information and education. No matter what, over the years the support groups have taught me that there are many more people “out there” who suffer from AS, and no one should have to walk this path feeling alone and scared.

  4. Hi Tyler, thanks for sharing your story! I am writing because I find myself in a similiar situation. I am a 35 y/o nurse dx with AS one year ago and I also have been an emergency room nurse for 5 years. My symptoms started as plantar fasciitis and knee pain 2 years ago with occasional back pain. My plantar fasciitis got so bad that I started to limp around (my physical therapist says I am 52% functional). Doctors thought it was just plantar fasciitis that was causing my knee and back pain, but after I failed three different physical therapist and two rounds of shots for my for plantar fasciitis they found the AS. I am fighting to stay on as an ER nurse, some days are pretty unbearable but I am caught between a rock and a hard spot. I have a 3 and 6 year old and my wife is a stay at home Mom, so I am the only breadwinner. I work for the uniformed services (sort of like the military) have great benefits and get paid very well. I could go to a medical review board and if they find me 10-20% disabled, they give me serverance and send me on my way (w/o health insurance), if I get 30% or more disability then I get that percentage of my base pay for the rest of my life plus health benefits( basically a medical retirement). The dilemma is whether to go to the board and risk getting severance (whch would be financially devestating for my family) or get up to 70% disability which would not be so bad. Most of the jobs in the service I work for are clincal nursing jobs, I have applied for desk jobs for the past year but no luck. My boss has been reasonable and somewhat accomodating. I roll around the ER on a stool because after awhile limping just hurts so bad,I get very fatiqued and achey. I am on some strong pain medication which works for the back, but not for the feet. (plus humira) I am starting to build a tolerance to the pain medication requiring larger does. I know I cannot go one forever like this, but if I get out of my current job, financially my family could suffer and health insurance will be extremely expensive. Anyways, just wondering if you had any words of wisdom being in somewhat of a similar situationi in the past.
    Thanks
    Jason

    Jason said this on December 19, 2011 at 5:18 am

    • Jason, I am so sorry I did not respond to your post in a timely manner! I confess that I have not been diligent in checking in here for responses. So, here I am, all embarrassed…and concerned that you may not have gotten answers to your questions.

      With regard to my nursing career, I worked as long as I felt I could physically handle patient care. Then I changed my career path by moving from hospital nursing into home health care. I did patient home visits for a number of years, then finally needed to stop that, so I moved into the office, working in the HIM department as an authorization nurse. After nearly nine years there, I accepted a job offer to be an Operations Manager for a different home health agency. I’ve also done a short stint as a Assisted Living Director in a retirement community.

      In November of 2011, I received notification of disability, after not working for two years. By that point, my AS had advanced to the point where I could no longer work.

      You are a lucky man to be in nursing, as there are many options that you can pursue if you find yourself in a situation where you can no longer handle the physical rigors of the ER. I realize it has been a number of months since you wrote your comments, but I hope you are still working because you have a treatment plan that is effective in controlling your symptoms. Please feel free to contact me via email: tchyder@comcast.net. I am also on FB

      Sending wishes for a low pain day tomorrow and a fabulous weekend!

      Ty 🙂

  5. Hi Jason,
    I feel for you, as being an ER nurse is physically, emotionally and intellectually challenging, which is all well and good for body without AS. I had to adjust my nursing roles over the years to accommodate my physical capabilities. I went from direct patient care, to patient pre-op teaching, then utilization review, then operations management. After the operations management position ended, I worked for a short time as an Assisted Living Supervisor to help get a new community up and running. Once that challenge was met, it had become obvious to me that I could no longer give my best to my nursing profession. Having been the breadwinner for our family as well, it was a heavy burden until my disability was approved in November of this year. My advice to you is ALWAYS wear shoes with excellent support; avoid going barefoot, even at home. To help ease symptoms of plantar fasciitis, there are three foot exercises that should be done twice a day to help strengthen the foot. The easiest one is to lie a hand towel on a bare floor and try to pick it up using only your toes. At first it might cause some cramping in your feet, so soaking your feet in a hot foot bath prior to the exercise may help relieve that cramping. Once your feet become stronger, the pain begins to subside. It does not happen overnight, though, and you must be faithful about doing the exercises and wearing the right shoes. I have found that Asics work the best for me. Also, if you are lucky enough to have someone available to give you foot massages, try to work out a deal where they will massage your feet in exchange for something you can provide for them. A good old fashioned barter is inexpensive, and the massages feel oh so good! 🙂 Feel free to email with with other questions if you have any. tchyder@comcast.net

  6. Hi Tyler,
    Our stories our very similar and I appreciate you putting it out there because it makes me feel like I’m not the only person going through this.
    I live in Redmond, WA (Education Hill) and I was wondering who your rheumatologist is? I am currently seeing Dr. Jimenez from the Seattle Arthritis Clinic but I have been unhappy with the care I have been receiving. My doctor at Redmond Primary has suggested I change but I have so much time invested in Jimenez since I moved here from MN that I’m afraid. Can you offer any suggestions?
    Thank you in advance,
    Jen H.

    • Jennifer, we are neighbors! I live in Redmond also, right across the street from the Trilogy Golf Course! I’m sorry to have been so slow in making a reply; in all honesty, I sometimes forget to check for new messages. At the present time I am seeing a great rheumatologist, who has been with me for more than 10 years. The only problem is that she practices in Covington. I am seriously considering a change, as I find the drive down there just too long. If I didn’t like her so well, I would have changed docs a long time ago. If you are willing to drive that far, her name is V. Joyce Gauthier, MD, PhD. You can contact me any time via Facebook. My FB name is Joy Everafter. I will look for you; if I can find you on Facebook, I will send a friend request. My direct email is tchyder@comcast.net. Stand tall and don’t let AS be your life. 🙂

  7. Tyler,

    Your story reminded me of myself. I am 22, just graduated with my BSN, working in ICU and my body can’t do it. What knowledge can you share with me as being an experienced nurse?

    Hilary

    • Hi Hilary! First let me apologize for not responding to your post earlier. I have been remiss in checking for posts here. Congratulations on graduating with your BSN! It is a great accomplishment, and I don’t think many people realize what a grueling program it can be. You say your body cannot handle the ICU work. My first question is, are you working full time? And then I’d ask which shift you are working? There are good and bad points to working every shift, but working evenings or nights can be less stressful (if that’s possible working in ICU) because there are generally fewer administrative “suits” around during the evening and nighttime hours. Have you felt comfortable in sharing your limitations with your co-workers, or do you feel better not telling anyone about your AS. If you think the rigors of ICU is too much for your body, maybe you can consider a different department. There certainly is less heavy lifting in pediatrics or NICU. No matter what unit you work on, you will always be on your feet a lot. Since you have your BSN, the nursing world and all its specialties is really open to you. Have you considerec community nursing at all, or research? If none of those appeal to you, hospice or palliative care may be a specialty your body could handle. Once you’ve had a full year of experience in acute care, home health nursing may appeal to you. I did nursing visits for a number of years until I moved into administration and worked as an home health agency operations manager. You have many options, and the fact that you have your BSN only make more doors open for you. If you get to the point where you cannot work on your feet at all, you may want to consider working in Quality Assurance and Peer Review. There are lots of options for you. In the meantime, while you are working in your current ICU position, be sure you wear the best possible shoes. I advise all ASers to go see a fit technician at a running store. I was able to work much longer by wearing really good shoes. The shoes not only fit well, they were tailored to the way I walk and the amount of walking I do every day. There are some advantages to discussing your AS diagnosis to your supervisor, or union rep if you are a nurse represented by a union. You have no obligation to tell anyone about your AS. If you do discuss it, it may be possible to provide an accomodated workspace that will allow you to do your job more comfortably. This is a lot of data, please feel free to talk to me any time about dealing with AS and being a kick-ass nurse at the same time. Hilary, if you are on Facebook, feel free to friend me, My FB name is Joy Everafter. Good luck to you; I am available to you at any time; just reach out. Tyler 🙂

  8. Mrs Hyder: Thanx for sharing your life experiences. I am living with AS for the last 10 years. One peculiarity that I have noticed is that there are periods of high and low. Right now i have excruciating shoulder and neck pains on the right side combined with inflamation of SI and these together severely restrict movement. Just two months back i had none of these! I suffer from Uveites plus onsetting Glaucoma. I take only mild nsaid and dmard. Although my doctor has advised TNF biological medication i have resisted starting it till now. I am 72. Wish you all the best!

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