Tuesday, July 22, 2014

How Does It Make You Feel?



     It's been a long time (over 3 months) since I posted.  Life is still in flux and in flux tends to make me crazy.  I am a bit of a creature of habit.  I am a planner and when I can't plan, I feel a bit out of sorts.  That is not to say that I can't be spontaneous, I just need to know that I have X block of time to hang with these people and I will be home at Y time.  For me the biggest thing that hinders that is Chronic Fatigue Syndrome.  It's incredibly disappointing and frustrating (for me and the people involved) when I make plans and so very look forward to them and at the last moment a wave pure exhaustion washes over me and it's all I can do to get home and crawl in my bed.

     Back in December on the post A Long and Winding Road I mentioned that they were checking me for lung issues.  Well, to follow up; I have had a second CT scan.  The pulmonologist said that the lining of my lungs has a "broken glass" look to it and said that that is caused by Non-specific Interstitial Pneumonia.  My Rheumy said that couple that with what looks like rheumatoid nodules in the lungs the overall diagnosis is Rheumatoid Lung Disease.    I don't physically feel bad.  Still, as before, I wouldn't even know I had this has we not had X-rays and the CT scans.  In fact, I haven't even been sick-sick since I quit smoking (knock wood) so if anything, I feel better than I did 6 months ago or so.  The treatment for this illness is exactly the same as my RA: Immunosuppressants and NSAIDS to try to prevent further damage.  My rheumy said that there is something else that we can try if this fails but as always it's a game of "hurry up and wait" for this offshoot of the RA.  

     When I shared this info on Friday my dad popped on Facebook Messenger (where my family talks ALL the time :-) ) and asked me about the diagnosis.  He then asked me "How do you feel about that?"  At the time my reply was simple:  "I feel like I am tired of hearing "there's nothing we can do except watch and see" I am also flat worn out from the cortisone injection and blood work. I swear she put knockout drops in there-lol"
It's true, I am tired of all of these "sub-diagnosis" surprises.I am tired of blood work every 4 months.  I am tired of my body rebelling against me.  I am tired of dieting and still gaining weight.  I am tired of being so tired I just can't exercise.  I can't imagine how tired of all of this that people who are less "stable" than I am are feeling.  .

     What struck me last night in thinking about all of this is that while I have a truly wonderful support system who look out for me and love me, I don't think anyone has ever asked me that question in that context before.  Oh, they often ask me how I am feeling physically and are truly interested in the answer, I don't think anyone has ever asked me how I feel about all of this stuff and the prognosis' that go along with each illness. Consequently I think I have focused on how I feel physically and really haven't take the time to explore how I feel about the internal rebellion.

     I don't mean I have never had a "why me" moment.  Trust me- I have.  Especially in the midst of a flare.  I have also processed the overall situation enough to know that I have to count my blessings or I will simply crawl in my bed and not come out.  On the other hand, I have never really stopped to explore how I really feel about all of this.  At this point, I just don't know.  I think it's going to take some time for me to get inside my own head and figure it out.  As I tend to compartmentalize, it's going to take some work.  The bad thing about that is that I am heading dead into my "Rush" period at work and from now till Labor Day I will be crazy busy.  The good thing is, I will have the "quiet time" at home should I have the mental energy to do the work since the husband is leaving on Sunday to go away for Truck Driving School.  He will be gone for several months as he does the classroom stuff for 3 weeks and then has to drive with a trainer for a couple thousand miles.  I am okay with this and actually happy for him as this is something he has wanted to do for at least 7 years.  That means it will be just the puppies and I at home for a few months.  Another change of schedule, another journey but time to stop and just sit in the quiet and think should I be so inclined.

     So I wonder- has anyone ever asked you how you feel about all of this?  If so, what did you say?  I do want to take a minute to thank my papa for asking me the question that is sending me off on this quest.  Thanks Daddy!

  In closing; I was looking for my Facebook QOTD and I found this that applies here too:

“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”


― Viktor E. FranklMan's Search for Meaning

I think I will keep Mr. Frankl's words in mind as I sift through the emotional and mental part of having multiple incurable medical issues.  

1 comment:

Wren said...

I love reading your posts, Jules. They're always thought-provoking and optimistic, and this one is, too.

First, though: I'm glad you posted! I've been thinking of you and wondering how you've been. It's good to know that you're okay.

I'm sorry to hear about the RLD, though. Seems like there's always something else popping up with RA--and it's never really anything good. I'm so GLAD you stopped smoking and proud of you for sticking with it--as an ex-smoker, I know how truly hard it is. Are you still using eCigs? If so, go you! ;o)

You know, I've never really thought about how I feel about having RA, either. I've alway just accepted it and moved on from there, since I couldn't un-have it and it's in my nature to make the best of things. But you've got me thinking, now. I feel a new RheumaBlog post simmering.

As always, Jules, here's wishing you the best. Try not to work TOO hard, and do take care of Jules before everyone else, OK? Sending a warm hug your way.