The Writer in the Rheum: Fighting to Retain My Identity with Chronic Disease

For some reason, I'm shy about discussing my treatment choices in public forums such as Facebook or my blog. I believe treatment choices are highly personal, and tend to be controversial. I have friends and family who believe only in natural/alternative treatments, I have friends and family who believe only in medical treatments, and I have friends and family who believe in a combination, or integrative, approach.

Thankfully, I also have some friends and family who believe that the person effected should be the person to make the decisions about their own care, regardless of what they personally would do.

I still don't feel comfortable writing about my choices in regard to my treatment plan, but maybe someday I will. What I would like to say, is that a couple months ago I switched things up significantly, and about nine days ago, I started feeling better.

I have said many times that no matter how much pain I'm dealing with, I want to choose not to suffer. I believed in that concept strongly, but have to admit that the last month or two has been rough. My quality of life was shot, my pain was raging out of control, and morning stiffness? Let's just say that on Thanksgiving, it took about the same length of time to "thaw out" my spine, as most people spend thawing out their frozen turkeys. I was in a place that felt unending. I felt almost physically sequestered from my own life and my family. I wasn't enjoying my life, and I was clinging to the concept of hope -- that maybe something could still turn my life around. But, to be honest, I wasn't sure it was out there.

My spinal pain was nearly unbearable. I woke every morning feeling as if someone had broken my back in the night. I could barely move, I couldn't bend, and the pain was reaching the upper limits of my experience.

I spent a great deal of time with a question rattling around through the haze in my brain:

Is there a writer in the rheum?

I am a writer. Other than being a mother, it's my highest calling, highest pleasure, and how I identify myself.

I was losing my ability to hang onto the dream of ever finishing my book, of ever writing articles again, of even getting back to this blog. I long to inspire others to face their lives with creativity, positivity, and an authentic lifestyle of thanksgiving.

But I was drowning. I have spent months fighting to stay afloat, fighting not to go under.

I felt I was in a cage of severe pain, and it was becoming harder and harder to function and interact.

I was afraid that I was losing my fight to maintain any quality of life, and that my dream of finishing my book, and starting new projects, would be unattainable. I was afraid that with a rheumatic disease raging out of control, my "writer" self would be lost.

I really don't know how much more I could have endured without some part of me slipping away forever; without losing my smile, my ability to be a friend or a good mother, or a writer.

I'm grateful beyond words (and as I've said here, words are kind of my thing) to say that I'm doing better. Just as I didn't know how to fight my way to the surface one more time, I'm doing better. I don't know if it's the change in treatment plan, or if I was in a brutal flare-up that is ending, but whatever the cause, I am unspeakably relieved.

A week ago we went to a Christmas concert. During intermission, I walked with my six year-old up and down three flights of stairs. I couldn't have done that before. I'm still excessively tired, I'm still running low-grade fevers frequently, and pain is still present, but the glass wall separating me from my life and my family has shattered down. I can touch them now, I can interact again, and my mind is starting to awaken.

I'm more committed than ever to write.

Because, you see, this is my story. It's mine and it's true. And maybe some part of my difficult reality will ease some hurting part in you.

Please don't give up on your dreams and fighting for your best life. I made a choice to fight, and I'm so grateful to be emerging from this dark place.


  1. I am beyond grateful to hear this Jenn. You are an amazing woman, mom, wife, friend, and writer. You are finally coming out of what I call the crisis years and awakening to yourself again. I'm sorry that it has been such a long struggle but that struggle will always serve you well into the future because you will fight with every fiber of your being to not let your life go back there and you have learned a deep empathy that can only come from a dark and painful place. All my love and hope for your continued improvement. xO

  2. Thank you so very much for sharing. I can identify with so much of what you are saying. I was diagnosed with Fibromyalgia years ago. The pain can go from intense to bearable...but it is pretty much constant. This world often feels like a lonely place when we are stuck in the pain cycle and often isolate because of it. I am a doer. I hate asking for help. The one thing that has kept me going is my faith in God. If I am having a very painful day I repeat "this too will pass". I encourage you to keep sharing your journey. God has given you the gift of writing to be an encouragement to others.
    God Bless you,

  3. Such a clever title! What a fine mind you have, to be able to harbor such a gem when awash in so much pain. I am so very sorry that it's been so bad. I'm so thankful the wall is down and you can feel human again. I hope and pray for continued improvement and a thriving life for you.

    I do understand a dream removed, the fear that it may now be unattainable, and that your writer self would be lost. So glad your dreams are coming true again. Thank you for writing! Love you!

  4. Thank you for sharing your story!! I hope that you continue to feel better! Having AS is something I think you have to have, to be able to understand the kinda of life stopping pain it can bring. I too feel like I have found the right treatment for my AS so that most days I feel great, (I found relief through a non-traditional "real" foods raw food diet, but regardless) there are still some days where the nasty AS dragon grabs a hold of my back or my sciatic nerve, or stabs a knife into my shoulder and I feel like a 99 year old lady on in inside, while still a 33 year old girl on the outside. I wish you all the best! It looks like you were blessed with a beautiful family to share this life with!!

  5. I've been reading some of your recent posts and catching up on all that you've been through recently. Jennifer. So sorry for the long rough patch, but so very grateful you are feeling better. Truly. I understand the reluctance to be public about your treatment plan choices. Whenever I write about my own rough places I brace myself for the inevitable, well-meaning, advice from those who have no clue. It makes it bearable to know that our Lord knows it all, and He puts people in our path who do understand, who can encourage us, and pray and love us through the hard places with authentic support and empathy. Sending you love and prayers.

  6. I am so grateful that you wrote this. I too am in that same boat is you. I can't even explain. I'm not a good writer. I'm not even a good speaker. Everything that comes out of my mouth is backwards. I am really grateful now that there's this speech to text on my phone app, otherwise you would never have heard from me. I understand your Thanksgiving, How your spine needed to thaw out as long as the turkey, that was really funny, that made me laugh because the same thing happened to me too, in fact we had to cancel Thanksgiving and do it on Friday.

    I am a soap maker. It's a silly story how I started. Really it's not silly, it's more like PROFOUND. Nine years ago I was in the hospital when I was pregnant with my last baby, well I was praying to God. I had preeclampsia & my blood pressure was out of control! I wasn't allowed to have visitors, telephones, curtains, TV and I was really scared that I was going to die. The baby was okay but, I prayed to God with all my might and asked him," if you let us out healthy & alive, I will do whatever you say."He told me to make soap! haha, I mean, I heard his voice out load. I thought seriously, I don't even know how to make soap. I didn't even know you could make soap So, after a month in the hospital, and them taking the baby 2 months early, I went home and I immediately learned how to make soap. I researched like crazy! I joined all the soap making groups. I read every book that I could find. I found out that all the harsh chemicals that I was using on my body could possibly be imparing my immune system. I had developed such a chemical sensitivity to everything that I was afraid to use anything. after cutting out so many harsh chemicals I noticed that I was starting to feel better. I wish I could say that I'm totally cured, I'm not, but I feel like I have a little more control over how I feel . I had become so inspired I felt like God gave me the Avenue to help others. I eventually turned soap making into a home school project. I was able to teach my children that God supplied everything we need from the salt of the earth. They learn how to compost, eat organically, We learning math, fractions, botony, chemistry, science, everything! Everything you need to run a business. To sustain. All for pennies. They started their soap making company at the ages of 14, 12 & 8. I have all girls! This opened up a whole creative outlet for me that I didn't even know I had. I make everything now. I sew, I make jewelry I garden. I Learned that I can do anything! and, we don't have any harsh chemicals in the house. *grin*

    I am so grateful to have been able to be forced STILL long enough to have the miracle of hearing God's voice.

    I make soap for even cancer patients. I canspread the news how harsh chemicals like sodium laurel sulphates can hurt some people.

    Sometimes something that would take me an hour to do may take a week or even a month but it's okay. I have a loving family who doesn't roll their eyes at me and they understand all the suffers that come with auto immune disorders besides the physical pain.

    What bothers me the most are the people who judge me and don't understand what people go through that have chronic physical disabilities, especially the ones that you can't see with your eyes.

    I pray for you and I am excited to have found your blog and, if I see that you haven't written anything lately, I understand why.

    Much love to you and your family

  7. So glad to hear you have been able to enjoy things with your family! Praying for even more relief in the months to come! Hope you have a wonderful Christmas!

  8. I'm so glad that you are emerging from the dark place. It is so good to see you blogging again, Jennifer. Your blog is definitely one of my favorites. Keep fighting, keep writing! Your life, lived with pain and suffering, is a beautiful sacrifice, a fragrant offering to the Lord. Thank you for sharing your life with us.

  9. you inspire me more than i can express! even though we have not actually met i feel blessed to know u!!


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