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Lost and Looking for Support

I had a rough childhood. I married very young, just to escape my unhappy life. Things just got worse. My young husband died, leaving me with a 6-month-old son, forcing me back to the same situation I had left. I only mention this because now, those days don’t seem as bad as some of the days I have now due to chronic pain.

From nurse to patient

I was a nurse for 35 years. Early in my career, I was diagnosed with Ankylosing Spondylitis. I had low back pain and I was frequently having neck pain, which I chalked up to stress. One of the physicians I worked with took note of my symptoms and he examined my spine and ordered an X-ray started me on high doses of Ibuprofen.

While it helped a little, I continued to experience the same pain. I continued to work but when my shift was over, I would tell myself, If I can just get to my car. I would arrive home, sit there for a while and talk myself into walking in the house and collapse in my recliner. I would sleep a few hours the get up to cook and clean for my husband and 3 children.

The struggle of fatigue and comorbidities

As that cycle continued, I began to suffer profound fatigue. I felt as I was constantly living in a hazy world. I saw a new doctor and she diagnosed me with fibromyalgia. As the months turned into years, I developed uncontrollable hypertension. No matter what they did my blood pressure would result in hospitalizations. Finally, they decided to take a look at my kidneys. A phone call came from the doctor, telling me that I had a large mass on my left kidney and they believed it was malignant.

A few days later I was given a diagnosed with Renal Cell Carcinoma and the kidney was removed. Between the surgery and the back pain I couldn’t even turn my self over in bed without my husbands help for several weeks. My health has continues to decline. At some point the diagnosis of AS disappeared from my list of diagnoses.

Looking for support

I now have Stage 4 renal failure. I receive PT and OT and I receive pain management. I take hydrocortisone with acetaminophen. I no longer have a social life, I have lost interest in my hobbies. It is so hard for people to understand chronic pain. I feel so lost but keep hoping for some solutions in the future. Hoping this site can give me the support I am longing for.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • MikeW
    4 months ago

    Hi Dorabell. I have AS as well. Your post is the first one I read after doing a search for AS support groups. It inspired me to create an account here and see if I might find some others going through similar struggles, yours are more profound than my AS only but I do understand your pain and I know what it’s like to not be able to roll from your back to your side in bed due to the pain. I also have lost my career, out of work since the end of the summer in 2018. I’ve come up with a million ways to try and describe my pain but recently it’s been “burning” and “restless”. I can’t sit or stand in one place for any amount of time. Losing interest in just about everything is another similarity we have in common. I think the thing I hate the most is how everything about AS eventually started to affect my wife and daughter. This pain makes the simplest of things feel like climbing Mt. Everest 4-5 times a day. The short temper and frustration I constantly deal with makes me very unhappy and I have to try very very hard to control it and minimize the impact it has on my very patient and supportive family. They are the only thing I haven’t lost.
    On the bright side, thanks for inspiring me to try this group. It is one thing I have not tried before and I’m always looking for new ways to try and gain some ground in this battle.
    -Kind Regards

  • KjPelletier
    4 months ago

    I understand the loss of a social life. I always did a lot to serve my friends whenever they needed me.

    Don’t even have the energy to reach out anymore… so I am down to just a couple of close friends left… and even those I hardly see or hear from.

    I am thankful for my family.
    My husband is awesome.
    My sisters are too.
    I am so grateful for that.

  • Lawrence "Rick" Phillips moderator
    5 months ago

    I am happy you found us. Welcome to our little community. I hope you find the support you need. Enjoy our authors and the wonderful writing that is presented.

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