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.
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?
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.