Nine months on and sharing this isn’t any easier for me. However this community has become so incredibly important to my wife over the past 2 years that I'd like to let you all in on a little bit of what's been going on.

in life •  5 months ago

It's been nine months since I posted about my wife's @girlbeforemirror's sickness.

Steemit was and still is an amazing support to her.


Last year @papa-pepper challenged the steemit community at large to a duel, helping to raise steem and SBD that went a long way towards pay off some of the medical bills that had been piling up. Similar to how he's stepped up again to raise money for @ARBITRARYKITTEN's "crypto-jeep" (to which @girlbeforemirror gladly donated) -

@papa-pepper is truely amazing!


(right: a screenshot from @papa-pepper's duel to help raise funds for @girlbeforemirror)


I would like to be bringing you an encouraging update, but the truth is @girlbeforemirror has not gotten better.

We don't know what to expect of the future, but we did have an expectation that with her diagnosis of Ehlers danlos syndrome, we would start to get some answers and direction from the medical community.

It has been a steep learning curve.
We have come to realise that there are considerable gaps, misconceptions and prejudice within the medical field.

So many of her illnesses stand alone as conditions that garner attention and appropriate treatment. Under the guise of a connective tissue disorder however, we have faced multiple specialities that all repeat the same phrase it's not my area.

My wife @girlbeforemirror luckily has many years of nursing behind her. This has been a blessing and a curse for us.
Knowing you are at risk and still being at the mercy of arrogant ignorance is not at all easy.

She has been to hospital, both booked and via emergency almost a dozen times since that revealing post.

Every time she vested faith. She put every last drop of hope into it.

She tells me she is running out of hope... we all are. But then she gets back up and talks about trying harder and searching further.

I'm writing this today because yesterday she was told she had to be urgently admitted to hospital.



She is scared.

She doesn't know what awaits.



To many interventions by ill-informed doctor's have caused harm.

She is going in to rectify these harmful treatments.

She has been getting sicker and sicker at home. We have little choice but to hope that this one knows what he is doing.





A screenshot from the gift package @girlbeforemirror sent to @papa-pepper and his @little-peppers


@girlbeforemirror mostly posts poetry and art on steemit.

She occasionally mentions her sickness but does not communicate the full extent of our situation.

A steemit post takes a huge amount of effort from her. It hurts and it tires her. But she continues because she feels she has very little else left.

@girlbeforemirror will be away from me and our kids for around a week.

This separation kills us. But we are cautiously hoping it will make a difference for the future.

Please continue to support and follow her.

I know it means the world to her.


Authors get paid when people like you upvote their post.
If you enjoyed what you read here, create your account today and start earning FREE STEEM!
Sort Order:  

I can't believe I am reading this..
It breaks my heart to hear what you guys have to go through, no worse feeling than an uncertain future, not knowing what to expect..
My thought are with you both and your family, I would love to be able to send a card or something? You could contact me on discord on the same nickname if that is possible..
Sending huge love and support from the other side of the world, stay strong, and never give up

🖤🖤🖤

Screenshot_20180410-172226.jpg

·

Hey catz,
You are a lovely friend.
It is 5am after my first night. I slept incredibly well (I assume that my roommate may not have, I am told I am not a quiet sleeper).
I am having a medication review that won't be fun but hopefully will improve things.
I am GirlBefore#7455 on discord.

·
·

I was a bit slow reacting, but we connected!
Whoohoo!

I can only imagine the sadness that comes with this post. But there will always be hope no matter how hard a situation gets. Praying for her recovery, and for your family. I really hope she gets better, and I hope you'll stay strong all throughout this.

hey I just found out that you are the husband @girlbeforemirror

I am very sad to read this, and I am so sorry about that. I just know what happened to you.

I really salute and really amaze to see the strength from within your wife.
I was still a few months in Steemit and have been following the @girlbeforemirror blog but I see her full of talents.
I was met by your wife in her poetry post.
she's really an amazing strong woman.
I hope the best future for your family.

Congratulations @azurejasper! You have received a personal award!

2 Years on Steemit
Click on the badge to view your Board of Honor.

Do not miss the last post from @steemitboard:
SteemitBoard World Cup Contest - Home stretch to the finals. Do not miss them!


Participate in the SteemitBoard World Cup Contest!
Collect World Cup badges and win free SBD
Support the Gold Sponsors of the contest: @good-karma and @lukestokes


Do you like SteemitBoard's project? Then Vote for its witness and get one more award!