Most people who know me think I’m always full of energy and have a sunny disposition.  Those people don’t see me when I’m NOT that person. That’s when I go into hiding.

Following a challenging summer- we left to snowbird for the winter.   Right before we left, I spent several days at Mayo getting all my parts checked.  I ended up with my foot and ankle in a brace for 6 months.

Last year it was my knees and SI joint that needed rehabbing all winter.  The year before it was my hips.  It feels like I go up and down.

 

I’ve been in much pain while walking for several months – turns out my ankle is not connected to my tendon exactly right. Too much inflammation and fluid. Lots of damage from RA. I was depressed for the first 2 long days of driving to our destination which is a 1500 mile drive – taking 2 cars. By the 3rd day I was starting to see some light. I was feeling hopeful that my great team of physical therapists could get me going again.  I started PT last week – 3x a week ( I have Thanksgiving off)!  After only 3 visits, I’m doing so much better. I love going to PT because I am convinced this team will get me 100% back to normal. I’m excited to get walking for exercise again.  In the meantime I’m on a bike.  But these ups and downs are hard on a person – both physically and emotionally.

The one thing I KNOW FOR CERTAIN is that I’m NOT alone.  I know that YOU go through this same rollercoaster.  How do you handle it? How do your family and friends deal with it? How much guilt is attached to always having to say no- I can’t go?

I am going to discuss SELF CARE in my next 2 posts.  Hopefully the second one will include some of your feedback.

Stay Tuned

As of today – I’m feeling SUNNY again. Hope springs eternal.

 

Later

C

6 Comments

  • Lisa Starner Posted November 16, 2017 1:52 am

    Love reading your blogs Carol, while I don’t have PIDD, I do have Crohn’s Disease and can totally relate to what you are talking about. I thankfully have a very understanding and supportive husband who just holds me when I’m not feeling well , it brings me a sense of comfort and calmness. Having understanding and support makes all the difference sometimes because you can feel very lonely at times.

    • mm
      Carol Miletti Posted November 18, 2017 4:53 am

      Thanks Lisa. I have PIDD as well as multiple autoimmune diseases. I think they give me far more grief that PIDD does. I try to write for both Immune and autoimmune as chronic disease has the same challenges. It’s very isolating- feeling alone is normal. Seems like the whole world is having fun- while we look out the window.

  • Laurie Posted November 16, 2017 5:36 am

    I am with yjou little buddy. My ups n down are too frequent. The support I get from Dwight us, sign, there is always something. My daughter just shrugs her shoulders. My granddaughter takes it in strides. My siblings, of course get more exercise. I hate, because, I blame it on me. I feel my body is getting older than it should be at 60. I always look to you my friend. Carol you are the best. I love how you put it all out there. You are truly my hero, whether you are blue, sunny or whatever you are feeling.I thank you gor ever.

    • mm
      Carol Miletti Posted November 18, 2017 4:49 am

      Thanks Laurie,I don’t get the support I wish I had either. DH is great- rest of the family is just over it! I think they get tired of us being sick. If they knew how WE feel – maybe they would better understand. Feel free to share my blog with family members if you think it would help.
      Hugs Little Buddy

  • Mary Posted November 17, 2017 11:52 pm

    I’m glad you’re getting good care.
    The roller coaster is real. So is guilt about not being able to do more. My family understands and I try not to let it upset me anymore cause there’s no point in it.

    • mm
      Carol Miletti Posted November 18, 2017 4:58 am

      Mary – yes- the guilt is real. Saying no when you really want to go; missing special moments; making plans amd cancelling them! Hard for others to understand.so glad your family understands

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