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When do you decide you've had enough


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Oh my goodness, I am right there with you Stephanie.  Are you pregnant now or did you just have a baby?  My heart goes out to you.  I feel like I am falling through the cracks and doctors aren't figuring out what's going on with me since the birth of my second, which was a year ago.

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We are with you on this.  You keep putting one foot in front of the other and only take the days as they come (sometimes I have to take moments).  If you take on the rest of the year at a glance, it's too overwhelming.  We have been happy to say that we have made it about a week and a half without an ER trip.  For that I am thankful.  May daughter has been suffering terribly this whole year.  She's only 20.  She's had health problems for most of her life, but the last year has been off-the-charts!  It is getting very wearing on her (and the rest of the family), even though she tries to stay positive.  I know how hard it is to have a baby or two and not be well.  Please hang in there and know that you are not alone.  Even though this is online, we are all real people with real struggles and we are here to help.  Wish we could all take turns babysitting so that you could take a nap, but know how hard that is amongst the neuropathy (daughter has that severely now, too).  Do you have some family or friends that are close that could make a meal for you or watch the baby while you slept?  Hang in there!

Sending gentle hugs and lots of spoons!

p.s. We are trying to get my daughter tested for Celiac Disease.  I only mention this as you have neuropathy and that is one of the symptoms.  It is a simple blood test that should have been done on my daughter years ago.  Why until now did they not think of this, I'll never know.  I wouldn't want anyone to go as long as she has and at least it not be brought to  attention.

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Stephanie, I read your post yesterday and I keep thinking about your subject line, "When do you decide you've had enough".

When I was in the middle of a terrible POTS flare up earlier this year I had some extremely dark moments. The days started blurring together - I was overwhelmed by the uncertainty, fear and pain.

Keep reminding yourself that you're strong and resilient - this nightmarish time will end. 

Sending you lots of positive vibes! You're not alone.

 

 

 

 

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This might not be helpful to you. If not, you can freely ignore it. And I'll give you the warning that it's part of Catholic theology and might not make sense to people in other belief systems.

I went through a very dark period during my third pregnancy. That's when my POTS started. I was so sick, even lying down, the dizziness and nausea were so bad. I had two kids to take care of but couldn't. I couldn't imagine getting to work. I couldn't even get myself to the hospital for fluids which probably would have helped. I was so dehydrated that they could not get blood out of my arm at an office visit. Sometimes I think it was a friend who helped me survive that time. She was also in a bad way but I paid her to shop for food and come over to cook a simple dinner for my family to make sure we would have food and eat, and that helped her feel a purpose, too. She would pet my head and back and pray for me as I would lie on the floor crying with sickness.

But during that time I decided if all I could do was suffer, I would offer that to God. And I would dedicate each day as a prayer for a certain person or group of people who I know needed help.

Again, not everyone would agree with me, but it got me through and gave me a purpose for living when things were very bad.

During another bad glare, two friends got me through. They would just call and check on me everyday or two. One had lost a child, then other was a cancer survivor. They know what it was like to feel physically and emotionally crushed and they were there for me. I will never forget it.

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Once in awhile you are allowed to have enough. But then you get back on that horse. I feel like the trying is sometimes so much harder than the illness. But we can't let the crappo doctors or the illness win. So back up on that horse we go....

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