Monday, December 9, 2013

It's a long and winding road



     It's been quite some time since I have written here and a long road back.  I have been essentially avoiding my blog all summer because it's been a very rough six months both physically and personally and I have been having tough time with gratitude through it all.  Every time I open a page I stare at it and stare at it until I finally give up and go back to something else.  I have discovered during all of this that in order to not be a "whiner" and to not feel like I am constantly complaining I have held everything in.  That has impeded my gratitude journey in a very, very big way and that is not good for me.  In the interest of full disclosure, because I hate cryptic posts and status updates that seem to just beg for attention, it's time to just put it out there.  That being said, once I do I will leave the personal "stuff" alone for a while and probably circle around to the medical side before too long.

     So let's get the personal issues out of the way first.  Back in the end of April, my husband of 27 years decided that he wanted to separate.  Much of it was about things that he was going through following the death of his father back in February and was (is?) not handling well but I contributed too because we had fallen into a rut and had become too complacent.  I am not sure where we stand at the moment which has been a very large part of me not discussing it unless necessary. I hate being in limbo and not having any answers.  I can only say that we are cordial and that we are working on getting on an even ground before we make any big decisions.  It's been very difficult because in addition to dealing with the dynamics between us I have been learning to live on my own for the first time in my life.  That has been an eye-opening experience to say the least and some days are easier than others, but I am doing it and making my way through.

     Now for the medical.  As I mentioned back in August, we discovered that I have 5 discs that are in rough shape.  I have been griping about lower back pain and neck pain for years and one little MRI gave us the answer.  Conservative treatment is NSAIDS, pain meds, muscle relaxers.  All of which I am already on for the RA and Fibro so I am taking a wait and see attitude toward the back issues.  If we go for aggressive treatment it would mean a combined total of about 24 weeks out of work with no guarantee that I could go back afterward.  And that's a risk that I am just not willing to take right now.  When they told me about my back and the treatment options I went into a funk and basically asked "What more can possibly happen?"  I also told my family "That's it!  ONE more thing wrong with me and I am taking to my bed and not coming out!"  I meant it at the time.  I was just feeling so very sorry for myself that I was ready for a giant pity party.

     Well- we got confirmation of that "one more thing" last month.  My Rheumy sent me for my routine chest x-ray in June and at my September appointment referred me to a Pulmonary specialist.  He did breathing tests (I am fine there) and sent me for a CT scan.  It seems the RA has decided to invade my lungs as well.  Because it's not really having an effect on my breathing at the moment, we are taking a "wait and see" approach here too.  I will go back in March for another CT scan to see if there is any change in my lungs, then back for another breathing test and visit with the pulmonologist to discuss any treatment plan.  The only way that this has manifested so far is that each time I have gotten sick in the last few months, what starts as a cold rapidly turns into bronchitis and stays forever.  I have discovered on my own (by accident) that a big contributor to the length of the illness is the Orencia.  I figured it out over Thanksgiving when I had been sick for 4 weeks already and went to my folks for a two week vacation.  In packing the car, I forgot to pack my cooler and left my Orencia sitting in the fridge.  After the first week off of it I started to get better and by the second week I was back to normal.  The previous illness (after my Back to School rush) had been less intense and had lasted almost 2 months so there's no telling how long this one would have lasted had I not gone off the immunosuppressant.

     We also discovered in all of this that because of my previous liver problems with Methorexate- I cannot take Tylenol products any longer.  My first bout of illness late this summer I had been taking Mucinex and during that time I went to the Rheumy for my routine visit. My blood work came back with elevated liver enzymes and so she had me repeat the blood work after being off of it and they went back to normal.     I will discuss this with my Rheumatologist in February along with all of the other issues to try to get a handle on the comprehensive overview.

     I am glad to say that the newest incurable diagnosis did not send me into the tailspin I expected and did not cause me to take to my bed.  Though I reiterate- one more thing could be the one.  As anyone who lives with a chronic illness knows, it's difficult to know that you have a disease with no cure.  As the illnesses add up it can be so very overwhelming.  I think that had I been symptomatic  when we found out it might have put me in a different head space but I just took a deep breath (figuratively) and pressed on.

    As crazy as it sounds, each of these things sounds bad enough on their own and cumulatively they have made for a really bad few months.  That said, I have found that if I compartmentalize each issue and deal with one at a time I am far better at handling it all.  I have learned that I can do that without too much trouble and that if I focus on one problem at a time not only can I deal with them but, if it starts to overwhelm me I can switch focus and move to the next issue.  As crazy as it sounds, I have learned be grateful that I have so many things going on because I can't allow myself to obsess over any one thing.  It keeps me balanced in a way.

     I have also discovered an overwhelming amount of support out there.  As word of our separation has come out to some and my medical issue have been discussed with others, people have reached out that I never would have expected and have been there.  That is something for which I am really grateful!

     In order to get back on track, I am currently reading two pretty terrific books.  The first is a non-fiction book by one of my favorite romance authors, Debbie Macomber.  It is called One Simple Act  and is a faith based book about committing one small act of generosity in order to make the world a better place.  The second is Simple Act of Gratitude by John Kralik who tells about using simple Thank You Notes to find his way out of the lowest point in his life and to a life of gratitude.  Each is calling to me in a different way and I am thoroughly enjoying both of them.  I think the will help both in the short and long term.

    Before I go, I wanted to bring your attention to the resources section for RA on the right hand side.  I have added a couple that you might want to check out.  Finally, I want to thank you for baring with me during my silent months.  I appreciate it greatly.  Have a wonderful Monday!


4 comments:

Wren said...

Oh, Julie. You've been faced with a "perfect storm" of troubles and maladies--no wonder you couldn't bring yourself to write about gratitude. I don't blame you. It's hard to be grateful under such circumstances. And if anyone deserves a great big pity party just now, it's you.

And yet, here you are. You're incredibly gracious and optimistic.Which means, of course, that you'll survive the storm.

I wonder--does your husband know about these additional diagnoses?

It's hard for strong people--and you ARE strong--to tell others about their troubles and ask for help. I'm glad that you're doing so, now. You're loved and cared about, and your friends want to help you through, if they can. So do I.

Email me anytime, Julie. I'd love to hear from you. Regardless, I'm sending a big, warm hug your way, along with a generous dose of comfort, warmth, care and patience. Please take good care of yourself, eat well, and make yourself your priority.

All with be well and all will be well, and all manner of things will be well...

mary said...

Thank you for this post. I often read your blog but have never posted. In addition to ra I have a number of other things going on. Some that will resolve in time and some that will be with me forever. Just today I was thinking "I just can't take anymore pain and be able to function". Reading your post came just at the right time. It reminded me to slow down and try and take things one at a time.
I wish you luck and better health. From your writting, I would guess you are a strong person and will weather these storms.

Julie Faulds said...

Wren, he is aware that something is going on but he's too far into his own head space to really "get" the implications. Thank you for the hugs. They are greatly appreciated.

Mary- Best of luck to you too. I believe that together- even if it's only virtually- we can face these things and still thrive.

Anonymous said...

Hi Julie,I really know how you feel right now. I have had ra for 11yrs now and these last four years it seems to keep piling on. Found out last fall I have cancer, which may be caused by one of my meds, of course it would be the one that keeps the flares at bay. But I still try to keep a positive outlook but sometimes I just would like a break. Keep your chin up and don't be afraid to ask for help there is alot of people who will listen and lend a shoulder.

Paul