Stress and rare disease – Part 1


Is this you some days?  Most days?

What are the reasons we get stressed?

We know it’s not good for our long term health, our ability to heal.

But those bills just keep piling up.  Can I go to work today – or call in sick AGAIN!

Is it time to think about disability?

We keep getting sick – or our PIDD child ( or children) get sick.  What do we do about their schooling?

Darn – my SIL keeps bringing over her unvaccinated kids- how do I handle that?

Those infusions- they really get in my way – and sometimes I’m too sick to care about anything.

Everywhere I turn – its stress, stress, stress.

My spouse could help more.  Oops – I don’t have a spouse – it’s so hard on my own.  Making ends meet.

Balancing the needs of my health.

MAIL AGAIN- more medical bills- what’s this about insurance not approving my treatment?

What do you mean my premium is going up?  I don’t have more money.

Where is the fairy Godmother  I asked for?

Oh no- now it’s a sick parent – how can I balance all of this?

Another diagnoses?  How can SOOOO many things be wrong with one person?

I just want to be normal- why can’t I make plans – and keep plans?

SLEEP -with this pain?

The world around me-I need to stop watching the news.

Its a vicious circle.How can I make it better?


Did I miss any?  I’m sure I did?

Let me know what your stressors are and my next blog- we’ll talk about tips that might help.

Waiting  to hear from you



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  • Michelle Posted August 16, 2017 10:40 am

    Your children’s IEPs, making sure they are getting the education they need when you constantly have to pull them from school to attend your appointments hours away because you can’t make the drive safely on your own. Dealing with insurance directed specialty pharmacies that don’t want to provide the care you need or your Dr had ordered. Adding more to your medical costs by going outside the pharmacy to do what your Dr wants you to do or get what you need to care for a PICC line the pharmacy won’t provide. Worrying if you are being a good mom in other ways besides being on call Dr, nurse, pharmacist, therapist, etc for medical issues 24/7.

    • mm
      Carol Miletti Posted August 16, 2017 1:59 pm

      Michelle, these are very stressful. Thanks for commenting. Do you mind if I use some of your comments in blog?

  • Ramona Martin Posted August 16, 2017 3:59 pm

    I think you nailed it Carol! I would add the stresses of being a single mom or an aging single adult and trying to juggle everything by yourself.

    • mm
      Carol Miletti Posted August 18, 2017 12:57 pm

      Oh, I surely agree with this Ramona. I can’t open a jar, most tubes, lift a teakettle without help or my brace. Heck -how about opening those blister packs everything comes in? Autoimmunity that often accompanies PI is a brutal combo. Add humor to get through

  • Stacey Stacy Posted August 17, 2017 3:53 am

    When your next door neighbor is a drug addict and loses all three of his child with whom you adore. So you step up and take them in your home to keep them from foster care. Worrying about food and whether or not I will have enough to feed them my own family.

    • mm
      Carol Miletti Posted August 18, 2017 12:53 pm

      It’s admirable Stacey. Don’t let this negativity impact your health

  • Stacey Stacy Posted August 17, 2017 4:06 am

    Living with a rare disease is tough and dealing with the fact that our insurance is going to cost us more than we can afford kind of makes you think. Is the government trying to kill us by not paying for our insurance. I already feel like a burden and now thanks to the potus, I am a burden to my country. Stress? Why yes we have everyday life and it’s happenings to add to it as well.

    • mm
      Carol Miletti Posted August 18, 2017 12:52 pm

      Stacey, I agree. The worries of insurance, combined with illness are enormous stressors

  • Debra Griffin Posted August 17, 2017 6:14 pm

    Great job Carol, I appreciate it so much I must share!! Thank you!!

    • mm
      Carol Miletti Posted August 18, 2017 12:51 pm

      Thanks Debra. I think I saw your share

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