Hey guys!
I rarely ask for anything on this site, but I’m compelled to do it today as I just found out a friend of mine has been suffering in silence and I feel like I have to use this platform to help. Even though she’d probably kill me right now knowing I’m about to share this with the world!
I don’t know how many of you remember Agatha K from FinCon and blogging circles, but I was just thinking about her the other day and decided to check out her site when I noticed everything had been deleted off it… I then moved to her social media channels and saw those had been erased too!
A bit freaked out I Googled her and sadly came across her current state of affairs – which is not good. Per this Go Fund Me page I learned she’s suffering pretty horribly from something called “Complex Regional Pain Syndrome” (CRPS), otherwise known as “The Suicide Disease” because apparently people find it too hard to live with (!!!).
Never heard of this in my life, but it sounds terrifying:
This condition gives me severe, burning full body nerve pain that comes on in response to an injury, but it doesn’t go away on its own…
The burning pain started in my arms after the injury and then spread to my legs and feet. I’ve tried countless medical treatments and undergone many tests. Unfortunately, the majority of them made my condition worse. Nothing has provided any lasting pain relief.
Worst of all, I received a steroid injection in my neck that landed me in the ER. What was supposed to help me actually spread the burning pain to my whole body. I felt like my entire body was on fire and even two bags of morphine at the ER did not take all of the pain away. After three trips to the ER in only two months and countless doctor visits, I had no answers for why I was in living hell.
It left me unable to walk or even sit. I became bed bound because even the slightest movement would flare my pain to a level 10 out of 10. From my bed, all I dreamed about was getting my life back. But I asked myself if my life in this condition was even worth living?
The saddest part is that she is one of the NICEST and HAPPIEST people on the planet! And I’ve never seen her down or upset about basically anything, so to see her in such pain like this is just devastating…
Doctors don’t even know exactly why this happens to people?!
Fortunately it looks like she’s finally found a place who knows how to treat it better and is slowly on her way to somewhat of a recovery (hopefully!), but in the wake of it all she’s racked up some medical bills along with her sister taking a leave of absence to help care for her full-time… (another beautiful person!)
This clip here on her progress made me smile and cry at the same time… But – baby steps!!
(Finally able to WEAR SHOES!! After months of not being able to!! SHOES!)
So incredibly freaky…
But can you see those rays of hope in her eyes?? A glimpse of what she’s normally like in life!! :)
At any rate I won’t try to depress you anymore here, but if you feel compelled to help her – whether in donating a few dollars or spreading the word of CRPS so others are more aware of it – I’d GREATLY appreciate it and here’s how you can do so:
- The Go Fund Me page to donate/learn more: Help Agatha Heal From CRPS
- What Mayo Clinic says about CRPS: Complex Regional Pain Syndrome (It seems most people get it in a limb or two – not their *entire body*!)
And then if you prefer to give a TAX DEDUCTIBLE donation instead, you can do that by donating through the Burning Limb Foundation where all funds go towards her care. Use this link here, choose “Specific Recipient” and then “Honor” at the bottom, and then type in her name: “Agatha Kulesza”
No worries at all if you don’t want to give or anything, but if you can THANK YOU SO MUCH!! I can’t even imagine what this would do to my life or any of my family members’, and I swear you’d be friends with Agatha if you ever met her in real life :) She used to carry around this ceramic wolf at FinCon dubbed “The Money Wolf” and it always cracked us all up just ‘cuz it was so freakin’ ridiculous…
But these are the people that bring color to our world!! So thank you for reading and getting to know her a little!!
And if you’re a religious person, I’m sure any extra prayers you can send over would help uplift her spirits too :)
Thank you, everyone.
Back to our regular financial prattling on Monday 👍
[Paula Pant, Stephanie Halligan, Eric Rosenberg, Agatha K, The Money Wolf, J. Money + others,
FinCon, 2012]
PS: A fun talk she did once on socializing with people outside of the blogger world: Agatha Kulesza – Get a Freaking Life via Ignite (in which you have 5 minutes to tell a story using 20 slides that auto-advance every 15 seconds)
***UPDATE*** Guys!! You’ve given over $600 $1,800 $3,100 so far – thank you so much! Cannot WAIT for her to log in and see the explosion of love going on! Thank you for going above and beyond for her!
***UPDATE II*** From Agatha! “Thank you to all of you and J for your donations and support. In late January, I felt so exhausted by therapy that I did not know how I would continue. Then all of a sudden I see a flood of donations and support in my fundraisers. It gave me such an incredible boost. I cannot thank you all enough! This week in therapy was more physically demanding than any other and my nervous system is able to handle it, which is wonderful news. I am doing everything I can in therapy to get to a full recovery <3”
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I think it’s great that you use your platform to help people. It’s no different than what you are already doing. Part of finances is giving generously, and I think it’s the reason for wanting to build wealth. Keeping it all to oneself has to be a crappy life.
I pray for her wellbeing.
Thank you!!!
It’s not naturally in me to promote things or ask for money, but just couldn’t stand back and do nothing on this one… Such a beautiful person that just needs a boost again to be back to her normal self!
(and 100% agreed on using our $$$ for good over time vs always just on ourselves… There’s so many people in this world that are way less fortunate than we are!)
Thanks for posting this. Your blog continues to teach, share and inform the FI community on many facets of the endeavors we endure. Our health is really our most valuable asset. When it’s threatened or taken away, we’d do anything get to get it back.
I’m sorry to read about Agatha’s story, I cannot comprehend the conditions that she is facing from a caregiver’s perspective.
The only thing that I have learned in dealing with long term chronic medical issues in my own family is to educate yourself to learn what questions to ask doctors, You can then question them on their treatment plans. Doctors are trained to treat, not cure using drugs they are familiar with or have experience with. Believe it or not, they don’t know what they don’t know and won’t tell you.
Press the doctors and challenge them for answers. They’ll eventually cough up specialists and referrals and give you another option or direction. There’s a specialist out there that has experience and direction for treatment.
One final thing that got us moving in a new direction that might help Agatha. DNA testing and a food allergy blood test. The amount of data is incredible and it’s helping to uncover a couple of ” smoking guns” to investigate. It’s another health tool at our disposal to get some answers and another method to create a more targeted treatment plan with different set of specialist.
Oh wow – very interesting, thank you! I’ve heard the DNA stuff on those wild reality medical shows, but didn’t even put two and two together with this one… Hopefully this has been brought up with her new team or someone here reads this as I have no way of reaching her at the current moment :( You’re so right that we don’t think about health until it’s taken away – what is wrong with us?!
Hey J$,
Do you know if donating through the Burning Limb Foundation goes directly to Agatha? I’m not fussed with the tax donation part of it so much as making sure she gets it. Go Fund Me is a great tool but they take a cut of the money raised. Just wanted to make sure she gets it or curious if you had a Paypal for her perhaps?
Thank you Lauren!!
The only info I have to go on is from the Go Fund Me page as unfortunately I don’t even have a way to reach Agatha because all my contact info was from all her defunct social platforms, but I did see that the money through Burning Limb *should* go right to her so long as you follow those few steps listed above… Especially plugging in her name there at the end – Agatha Kulesza
Thank you so so much for taking the time to ask and possibly give!
Hi Lauren! I’m just seeing this entire article that J posted and I am blown away. YES all the funds you give to Burning Limb go directly to my care. I partnered with them to give people the incentive of a tax deductible donation. Just make sure you choose Specific Recipient, Honor (at the bottom) and then type my name in the field. Here is the giving link https://burninglimb.com/giving/
Thank you to all of you and J for your donations and support. In late January, I felt so exhausted by therapy that I did not know how I would continue. Then all of a sudden I see a flood of donations and support in my fundraisers. It gave me such an incredible boost. I cannot thank you all enough! This week in therapy was more physically demanding than any other and my nervous system is able to handle it, which is wonderful news. I am doing everything I can in therapy to get to a full recovery <3
Thanks for this highlight, J! I always want to check on old-time bloggers when I don’t hear from them in a while because I worry they’re not doing well and need help. It’s probably paranoia but then you find someone in a situation like this! I’m glad you checked on her.
I know, me too :( Thank GOODNESS this page was set up or else I’d have no idea and she’d really be suffering in silence!! It’s so scary when people just disappear online and you have no way of reaching them!
Donating and will be spreading the word on social media to do the same. FI community needs to stick together! I can’t imagine how horrible that condition must feel. Especially going in for treatment to have it only get worse. I hope she can find some relief.
Thank you BC – really really means a lot.
I can’t wait for her to log in later and see these coming through :) Already up to $1,850 today – amazing!!!
Nice of you to spread the word about this. I had never heard about this. Sounds horrible. Hope she finds relief soon
same – first time I’d ever heard of such a thing too :(
so scary how one minute you’re basically fine and then the next extreme pain and you don’t even know what exactly causes it OR how to fix it!!
Donated, thanks for bringing this to our attention. Such a horrible disease! Be well Agatha
Thank you Claire!!
J, is she aware you are doing this. She’s gonna notice a big bump on her GoFundMe page. Just curious if there’s some way she knows there’s a lot of people from the blogging community giving her a hand. Would be great to feel that support and know where it’s coming from!
I haven’t been able to reach her so it’ll def. be a surprise! Can’t wait for her to see it :)
Saw some people mentioning the blog in the comment section so she’ll figure out fast what happened, lol…
We just crossed $2,000 – so incredible.
Very cool of you to check in on her and even better that you’re spreading the word on about this. Hopefully she finds relief soon and with additional support and awareness from you.
I hope so too!
And that someone checks on me if I ever disappear here! :)
I empathise with Agatha. CRPS is a horrible illness.(I call it CRaP Syndrome) It arrives out of the blue, usually after a relatively minor injury or an operation. The pain is excruciating, and in my case after more than 13 years, I still suffer from it, although fortunately, my pain has mellowed somewhat over the years, but it is still there. There is no cure that I know of. It changes your life, and not for the better. As someone who cycled to work, ran 10k races & swam loads, I count myself lucky that I can walk as far as I want and bend my knee (thank you physio), however I can no longer run and my swimming is pretty restricted.
I don’t speak about it normally, my immediate family know about it, but few others, however I felt that I should add weight to J Money’s post. .
I am so sorry to hear that, Erith – would have never guessed as you’re always so positive online! You’re great at channeling your energy! Thank you for sharing as I’m sure it helps others out there also going through something similar.
I had this! It is unbelievable. I got it after a tendon in my foot tore and I had a reaction to the adhesive they used to close the wound. I was in a wheelchair, and they thought I would never walk again. It was an absolute miracle that I was able to find someone in time who actually knew how to treat it, because many doctors are very ignorant of it. My doctor argued that I didn’t have it because only “weak” people got it, and I have too strong of a personality. What ….???? Anyway, I really feel for her because it is a pain that is hard to describe. I know people who have gone to Germany and had themselves put in a coma to try to cure it. It’s no joke. Thank you for sharing this, and I wish her the very best.
ACK!! This is such a crazy thing to experience!! Had no idea it affected so many people, this is horrible… Really really glad you found someone (you could trust!) who could help treat you for it.. The worst is not knowing what the hell is happening and people not believing you :(
It’s anonymous on the page, but in your honor I just threw some in the pot. Thanks for giving us the opportunity to give a little back!
Really appreciate that Adam, thank you so much!
Thanks for sharing this with us. I will pray for her recovery as well. One of my new year resolutions was to increase my budget in giving back to the community every year going forward.I am glad that you are using this platform to help your friend.
Thank you Sagari :) An excellent resolution to take on for sure. I hope you pull it off!