chronic illness

Choosing Hope vs Facing Reality

Choosing Hope Despite Chronic Illness
Friday I found myself in a difficult place after my appointment with pain specialist. Since my initial diagnosis, my focus has always been on choosing hope despite chronic illness in order to keep myself in a positive mindset but there are times where this is proving to be more difficult. At my previous visit, my doctor and I  made the decision to move to from taking a pain pill to using a patch hopes that it would relieve some of the common gastrointestinal side effects  and that the constant intake of medication would be more effective than the ups and downs that come as a result of traditional pain medications.

As hopeful as I was about the change, the reality was that it was just not working as it should. The dosage seemed to be too low as I was having to rely on my breakthrough-pain medication on a daily basis. Surviving the work day was a challenge and I often had to retreat to the bedroom to lie down shortly after getting home from work because my pain levels were out of control.

As a result, obviously, I asked my doctor if the dosage could be raised. He did not question my experiences but he did remind me of the delicate nature of narcotics (tolerance issues, etc) which, of course after nine years with chronic illness, I was fully aware. I definitely would not have asked if  I had not thought it was necessary. I do not want to be on narcotics any more than he wants to prescribe them. I hate the fact that I have to rely on medication to function on a daily basis.

Before leaving the room, he decided it necessary to discuss the degenerative nature of my chronic illness. It was his opinion at this stage in my treatment, we are simply trying to make things as tolerable as possible. To strive to be 100% pain-free would be unrealistic as it is pretty much fact that my body will continue to work against itself (by building scar tissue, the continuing auto-immune issues, etc) and unfortunately things will get worse and harder to manager therefore it is in my best interest to be very selective with increasing my dosages so that I will have more available when the time comes that the pain becomes even more debilitating.

I am not naive or in denial about my illness. I know there is no cure and that we are honestly out of treatment options so yes we are trying to get to the point to make things as tolerable as possible. Honestly, I just have issues stomaching the term “degenerative.” At 30 years old, I have a hard-time thinking that my body is already starting to wear out and that it is going nowhere but downhill from here.

I cried.

A lot.

Thank goodness I did not wear a lot of eye makeup that morning and that the parking lot was pretty much empty.

My emotions ran from sadness to anger to frustration. My first instinct was to fight. I”ll just get another opinion. Find more answers. Someone out there can help me and prove this guy wrong. There is hope for me.

Then I flashed back to last week’s visit with my endo doctor as we had the discussion of being out of treatment options with tears in both our eyes. This is the doctor that I trust more than anyone else and know that she knows my case inside and out. She has taken my file home on the weekends to study. She has brought up my case at conferences with speakers in efforts to come up with new ideas. When she says “I don’t know anything else to try,” I know she is saying it with complete honesty and know that we have tried absolutely everything that she knows to do and everything that she has been able to research, even the things considered experimental or off-label. It is not something she takes lightly.

Then as I sat in my car, I asked myself – when do you get to the point where you move from holding onto hope that there is something else out there to try versus accepting the reality in front of you? When do you move from saying, “I do not accept this conclusion and will get another opinion (and another…and another)” and say, “This is my new normal and I must learn to make the best of it.” How many doctors must tell you the same thing before you accept it?

Hope Despite Chronic Illness

This is the place where I am currently finding myself and it is a very hard and uncomfortable place to be. I ended up leaving work early to take some personal time on Friday in efforts to take some time to both clear my head and find some way to process it all. I spent the afternoon thinking, reading, and writing.

I have definitely not reached a conclusion at this point. The intense emotion has subsided and instead I find myself more introspective.  John happened to be off work on Friday so we spent time talking everything over. Since Abby was at school, we were able to talk uninterrupted and if you have a preschooler, you know how big of a deal that is.

At this point, I think we have found ourselves somewhere in the middle. I don’t think either of us can ever totally give up hope that something could be out there but at the same time we acknowledged and accepted that we need to accept some of the new challenges that we are facing as a family and do our best to make some adaptations that allow our family work better as a unit despite my chronic illness. One of the things I started researching is a wheelchair to keep on hand as a backup which will allow more mobility when I’m hurting or fatigued so I do not necessarily have to be home-bound and we can still get out and about and enjoy our family time on the weekends.

This post is most definitely to be continued as we continue to figure out this new shift in normal for my life and my family.

, ,

25 comments on “Choosing Hope vs Facing Reality

  1. Diane says:

    Jamie. This was an amazing post. I’m sorry you are going through so much. My story mirrors you. Having the same conversations with doctors and only being 30 years old. It’s hard to find hope when all you feel is despair. But please know that God is using you and your story to touch others. I really think you should consider writing a book. Your words flow so fluently and your emotion is felt thru your writing. I’m praying for you Jamie! May God richly bless you.

    Reply
    • Jamee says:

      Your comment totally made me tear up! It was another tough one to write because I almost feel like by choosing to accept reality I am at the same time giving up. I’m trying to tell myself that there is just as much strength in saying “Ok, this is how it is” and finding ways to continue to find joy and hope in spite of it than there is by continuing to push for more opinions. Thank you again for your kind words! I would love to write a book!

      Reply
      • joyce says:

        There is a slogan in 12 step programs thats goes ” awareness- acceptance-action.” It means that each of those stages has to be experienced before the next one can be truly effective. I live with severe chronic pain and illness, too, and I use the slogan to remind myself that acceptance does not mean giving up hope in finding things that will help, but means accepting that things are the way they are today. This has helped me to accept the need to get a disability parking placard for example, which my pride resisted for a long time. Especially because I have a hidden disability. But it has greatly helped in my ability to be mobile and out in the world!

        New treatment options are being developed all the time. But we do not have them today. That balance of living in the present moment but not giving up faith and hope– I need my spirituality to help me with that balance, for sure! Thanks for sharing your experience with this as well.
        keeping the faith while accepting what is,
        Joyce

        Reply
  2. joy says:

    I understand how you feel, at the age of 23 I had gone through every available treatmet and had a hyst by age 25. Now at 27 i am worse than ever. Its hard hearing that things will most likely not get better and they in all likelyhood will get worse, esp at a young age. I love your writing and like the other lady who commented belive that you should write a book. I have found such comfort and inspiration in your words and i will be praying that the Lord leads you through this time. And from what i have learned and something that is important not to forget, accepting your reality while beliving and holding onto faith and hope in God and His miracles and healing hands, is not giving up the fight. Fighting to me now is getting up each day and thanking the Lord even though we are in pain day in and out, and asking Him to use that pain and direct us in doing so. We can still fight and have hope while accepting our illness and its realities! I pray you find this balance! God bless!

    Reply
    • Jamee says:

      thank you so much for your words of comfort and encouragement! I am sorry to hear you too had a hysterectomy at such a young age and aren’t getting the relief hoped for from it. I thank God every day for the women that He has put in my path to help me through these trials that can provide so much support and love!

      Reply
  3. Angie says:

    It was almost eerie reading your post, because I just got off the phone with my neurosurgeon (second neurosurgeon) who is referring me to a pain management doc (this will be my third) for chronic back and neck pain that’s been going on since 2009 despite 4 surgeries and more therapies, treatments, and medications than I can count. He finally admitted that it’s unlikely my pain will improve and that he has nothing more to offer me. Having an honest answer was nice, since I feel like my life has been on pause while I’ve been “waiting to get better”, but, like you, I’m trying to find a way to balance not giving up hope with the reality of adjusting to the huge changes in my life. My prayers are with you!

    Reply
    • Jamee says:

      I so know what you mean by the pause button we seem to put on our lives while waiting (and hoping) for any type of answer, treatment, ANYTHING that will improve the quality of our lives! Thank you so much for sharing a part of your story and sharing your words of encouragement!

      Reply
  4. Joanna says:

    Jamee,
    I absolutely hate reading how hard this has been on you. I can somewhat relate to the horrors of facing a reality that a chronic illness and chronic pain will not ever go away. But nowhere near to your extent.
    You are such an amazing person and so strong to share your story. I am praying for your comfort and most importantly that you are able to find peace in a treatment procedure that is the most beneficial to you.
    You work so hard and you are such a wonderful and loving mama! You deserve to have some peace now from all of your struggles.
    I have found out that sometimes we have to readjust our view point so that we can accommodate our “new normal”. You have to do what’s best for you. I am thinking of you during this difficult time and sending all of the love and prayers I can.

    Reply
    • Jamee says:

      Thank you so much for your kind words of support and encouragement! Words cannot describe how much they mean to me and how touched I have been by everyone’s support this week!

      Reply
  5. cheryl says:

    the time a leading GYN said that i’d likely need to admit i’ll struggle w pain for life was hard. but i also did appreciate his honesty and i did work to process it into a new normal (although that problem was not at all in the ballpark of yours). i joke i finally cured my eno by getting a worse pain (for me)….not the way to go.

    it is SUCH a tough balance. it HURTS and you NEED, not just wantm relief. as you know, pain sucks at all areas of your life, taking your mind and soul strength along with your body. i keep dreaming of a pill that really works and that i wont outgro in 6 months.

    i hope you find the right spot for you. i also hope your amazing volunteer spirit helps feed you as you learn from those you help

    Reply
    • Jamee says:

      Wouldn’t it be nice to find a pill that not only works but works long-term? It is so frustrating to find a treatment that works well only to find out it fizzles in six months as your body becomes immune! Thank you for your continued support! It really does mean a lot!

      Reply
  6. Jamee – you are such a strong thoughtful person. I’m yelling at my computer “don’t give up hope!” because you just can’t. You’re doing all the right things by searching, but also by making changes to accomodate where you are right now. I’m sending lots of wishes to you.

    Reply
    • Jamee says:

      I don’t think I can ever totally give up hope. I’m too much of a fighter 🙂 I did bite the bullet and order a wheelchair this week for rough days (ebay FTW) but don’t you bet I’m going to find a way to snazz that thing up and find a way to rock it in the meantime 🙂

      Reply
  7. Stephanie says:

    Jamee – this was such an amazing and honest post. I can relate to so much. I just had a laparoscopy this June and was diagnosed with endometriosis after nearly a year of excrutitating pain. 4 months after the surgery, I still have my painful days. However, I refused to go on any treatment (birth control pills, Lupron, Mirena, etc.) I am completely against medicating my body with no guarantee of relief. I have focused and have spent so much of my time and energy on finding natural ways to deal with my many pains. Chinese medicine and Acupuncture have been an immense help for me, but with anything, it has taken a lot of time to see results. I hope that you find something that works for you and can experience as many pain-free days as you can. Your possitive energy and inspiring words are so motivating and touching.

    Reply
  8. Anna Popescu says:

    Jamee, I honestly don’t know what to say here but I do want you to know you’re in my prayers…

    Reply
  9. Annabelle says:

    I’m not sure I can say anything helpful, but I can only imagine how difficult it must be to be where you are right now. I hope you manage to find a path out of it soon.

    Reply
  10. This is a great post and really touched me. I am so sorry that you are going through this and that you are wondering where fight ends and acceptance begins. I am very glad that you have a doctor who you trust–thats so significant in this process. You are an incredibly strong person and I know you’ll get through this.

    Reply
    • Jamee says:

      thank you so much for your words of encouragement! It was a very tough post to write and then hit publish but I am glad that I did!

      Reply
  11. […] Health and they hosted a blog carnival and I wanted to link up with at least one blog post! My post Choosing Hope vs Facing Reality was definitely a very difficult post to write. My mouse hovered over the publish button before […]

    Reply
  12. Rachel Ann says:

    I’d be interested in hearing how your faith in the Lord has played into this. Especially, the acceptance of disability in the midst of all this “name it and claim it” Christianity. Ya know what they say….they question your faith in the healer.

    Reply
    • Jamee says:

      I have definitely had to wrestle quite a bit with my faith to get to the place where I am now. I was raised in a church where you don’t question God. Ever. So when I started getting sick and begin to face infertility, I found myself in a difficult place. I felt like if I questioned God and especially if I got angry with God, it meant that I didn’t have strong enough faith (or any faith at all). During the height of my struggle I was doing a chaplaincy internship at a busy hospital which thankfully gave me a great team of peers and supervisors to walk beside me and support me as I sought answers. I had to come to a place where I had to accept that I wouldn’t always understand and that I wouldn’t have all the answers. I learned that that is where true faith resides. There is a song by BarlowGirl called “I Believe In Love” that just spells it out better than I ever could. Personally, I don’t believe that God made me sick. I don’t believe that He looked down and said, “Jamee is going to suffer.” I believe that it is the exact opposite. I believe that He suffers alongside of me and cries with me. I think that sickness is just one of those things that exists in our broken world. I believe with all my heart that God is Healer and has the power to heal me. I really do. Now whether it happens today or never, I don’t have that answer and that’s tough. When it gets hard to trust because I don’t know the future, I can trust in God’s character and know that He is good and He is faithful and will never leave nor forsake me. That is what keeps me getting out of bed every morning and keeps me pressing on. If you ever need to chat, please don’t hesitate to contact me!

      Reply
  13. Louise Bibby says:

    Jamie, this post has truly inspired me, while at the same time I sit with a tear rolling down my face as I write this. Finding that balance between hope and acceptance is something I’ve dealt with for over 20 years, but I am not facing a degenerative disease – just a long-winded one!! (CFS/electrosensitivity). I wish somehow all healthy people could get to read this blog post, especially the ones who doubt the reality of their loved ones’ pain and illness. All I can say is THANK YOU for writing this. Thank you for your authenticity and honesty. Never give up hope. I was diagnosed with a genetic condition (pyroluria) last year after 20 years of searching for answers (by a kinesiologist/chiropractor NOT a doctor – eventually confirming it with a urine test). This condition MAY be causing all my symptoms and over time, with supplementation of the nutrients I can’t hold in my body, I MAY get well again – completely! I had pretty well given up hope of ever being totally healthy before this diagnosis – and I’m not saying things are rosy yet – but what I am saying is, we just never know what may be around the corner. Acceptance of WHAT IS today is essential for us to continue with life, but, and I think you have this attitude anyway, miracles DO happen and maybe, just maybe, you might be on the end of one down the track. I do very much hope so.

    All my love

    Louise Bibby

    Reply
  14. Oh how I can relate, Jamie! I think of this so often, it’s like a strobe light between hopeful and hopeless. I wrote a post that addresses this same topic at http://reneweddaily.com/fighting/

    I will be praying for you on your journey…… one that I’m sorry we have to share, but I am glad people like you are here with me. Heart Hugs, Shelly <3

    Reply
    • Jamee says:

      While it hurts to know that other people are other there struggling the way I do, it gives me strength to know that I am not alone in my struggles and that hope is universal and we can get through this together!

      Reply

Leave a Reply to Strong Melissa Cancel reply

%d bloggers like this: