It was a week of firsts for me – and none of them were good.  Combine with unplanned trip to Mayo, a lupus flare, unmanageable pain and the only solution that appealed to me was to spend the week-end in a blanket and pillow fort – Sleeping, listening to audiobooks and drinking tea.  The pain was deep, the depression that followed was real. Add to that very little sleep and it became the vicious cycle we all have come to know living with chronic disease.  Added bonus – I woke up with a weird virus.

This all occurred while the weather was beautiful, my Grands were playing sports I wanted to watch- everyone was living life but me – or so it seemed.

Isn’t this how we feel when we get sick and down? The world is passing us by?

When we have chronic disease, depression is often part of the total package.  It causes not just physical problems, but also emotional damage.

 

I WANT TO BE ALONE!

Isolation is very often the normal way we cope.  Not leaving the house, removing ourselves from those who aren’t able to understand what it’s like for us – hiding out from life! It gets lonely.  Places like Facebook groups, IDF Forum, chat rooms and blogs are all good places to reach out- to vent- and to learn you’re not alone in this journey!

WHY DOESN’T MY DOCTOR UNDERSTAND?

I’ve been fortunate because I’ve assembled a team of caring docs.  It did not happen overnight though.  What if your doc doesn’t believe you when you call or visit?  It sure doesn’t help depression symptoms if you aren’t believed.  Remember that you’re the BOSS!  It might be time to fire your doc and find one who listens and cares about you. Yes, they really exist.  And when they’re good- they’re GREAT!  So make sure you have the right team to help you through this ride.

 

MONEY! BILLS!

There is never enough money and always too many bills. Insurance, doc visits, hospital stays, meds, out-of-pocket$$$ Another $800 prescription? How much is my monthly IgG? NO – you’re kidding me! Will I have to skip this one – or that one? STRESS leads to even more depression. How to dig out of this hole?  Don’t forget- Patient assistance programs exist for many meds.  ASK! Some have sliding scales, payment plans, or might even be willing to forgive medical debt!  Yes – that’s the truth.

Biotekrx can always help if you need it. Let me know, and I will have someone phone you.

GRIEF

The hardest part for me is the GRIEF!  ‘But I used to,’ is one of my most often used phrases.  There are so many things I used to do that I can’t physically do now. It’s mostly due to pain or damage to my joints. I often grieve for my old self.  I MISS ME. I find that writing helps – not just this blog – but even more personal journals where I can get to the ‘real meat’ of the pain and depression. ( I learned this trick from a very good friend and therapist) We really need to find a way to deal with accepting our reality. It’s very difficult to discuss with anyone who has not walked the walk.

Find a way out. It’s not healthy to stay in a bubble.  But it is often necessary for self care. Plan to take a step out when you’re ready.  We’re here to hold your hand.

How do YOU cope with pain, illness, depression?  Please share your coping mechanisms.  We could all use your help.

 

 

Later – I’m folding up my blankets now.

C

 

5 Comments

  • Tess Galati Posted September 19, 2017 6:45 am

    Beautiful writing! You capture what I’m experiencing right now. Again. thank you.

  • Ramona Martin Posted September 19, 2017 7:15 pm

    Another awesome expression of our lives; thanks Carol

  • Janet Posted September 20, 2017 12:48 pm

    Carol, I’m crying my eyes out reading this! I’m not the one with the PID, it’s my daughter and granddaughter. Nobody’s helping my daughter, she’s VERY ill!

    • mm
      Carol Miletti Posted September 20, 2017 10:09 pm

      Janet, does your daughter have a clinical immunologist?

  • Mary Posted September 20, 2017 1:48 pm

    Lots of truth in this blog. Thanks for writing it.

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