Updated: Sep 6, 2019
In the course of starting and maintaining this website, I've read and researched a lot. And one of the things that I kept seeing over and over again were posts on social media about what it's like to actually live with ADD/ADHD. What it was like to grow up having it, diagnosed or not. What it's like having it as an adult. The ways in which it affects someone's day-to-day life, work, relationships.
And I found myself more and more, seeing myself in those posts. I saw my childhood and education in them, my teen years, my jobs and relationships, my day-to-day life now.
I've spent the last 7 years pinning all of my brain troubles onto post-chemo issues. My terrible memory, my inability to focus, my issues keeping track of the day, the date, the time. But reading about the lives of people with ADD, I realized that my issues go back before I had chemo, before I had cancer. My brain has always been unreliable. My memory has always been a challenge, and my head has always felt too full, too busy, too crowded. Chemo just made all of that... worse.
When we first started PSS, it was... easy. Building this site became my hyperfocus, my special interest. I would spend 8-12 hours at a time at my computer, creating, building, designing, researching. But the longer we're here, the harder it's gotten for me to keep going. Not for lack of desire, because I LOVE this site and I LOVE what we're doing and it's crucial. No the problem comes each month when I sit down to do this homepage- and you've all seen it. Late releases, fewer and fewer new shops added at a time, even june, without a new homepage at all (though to be fair, part of that was a weather/power issue). But in the last few weeks especially I realized that it's not JUST that my brain is struggling, but that the struggle is causing me more and more actual distress.
And since there is no way I'm going to stop this project, my only other alternative was to seek some help with my broken brain. i made notes, texted them to myself and went to see my doctor. A conversation, a checklist, and about 20 minutes later- that's how I got my ADD diagnosis- and a plan to help me make my broken brain work better.
It's been about 2 weeks now, and I'm learning my way through my adderall. But the short story is- when my meds are active in my system- my brain is SO QUIET. Instead of a constant backdrop of to-do-lists and frustrations, and distractions, and worries, I can pick a task and actually sit down to accomplish it. If I take my doses as prescribed (1 in the am, and 1 at noon) I am guaranteed basically 3 or 4 hours of really good, focused, FUNCTIONAL brain time. I've done more in the last 2 weeks in small 4 hour chunks than I've accomplished in the last 5 months put together. And I do not miss the distress of knowing what needs to be done but not being able to DO it.
And I recognize that my process for getting diagnosed and helped is NOT the norm, especially for adults. I'm blessed with an absolutely incredible Primary Care Physician, and decent medicare advantage plan, and said doctor really understands how to work that plan to give me the best care at prices I can manage. But even with that privilege, I suppose I'm sharing all of this in the hope that I can reach even one other adult out there, who is ripping out their hair in frustration, who is distressed sitting at a desk 8 hours a day without actually accomplishing what they NEED to do, who forgets every loved ones birthday because ... what are calendars?? Who can't find an important document because they can NEVER find anything, who is chronically late to everything because time is too weird to keep track of... and convince you that it is worth the fight to seek out a diagnosis.
You are not too old. You are not beyond help. You deserve to have a brain that is, even for just a few hours a day- not loud and cluttered and broken. You deserve to have the kind of peace of mind that comes from functionally managed ADD. Don't lose hope. You are worth it.
In related news, (thanks to adderall) there are 3 NEW DESIGNS up in our own shop this week! And, since we have a major web hosting bill due on September 9th, now is a GREAT time to buy some snarky merch from us at the PrettySick Supply Shop
We've got a new set of designs in our "STILL" series, and brand new designs- all specifically for our invisibly disabled/invisible ill folks. (Another version of the When I Look it design is coming that will read STILL SICK instead of still disabled)
So please check out our shop and get yourself or someone you know something snarky and fun, or you can donate directly to help us with hosting fees etc. by donating to our paypal by clicking HERE
We need $204 by September 9th in order to keep this website up and running and free to our community. Right now we're at $30 and we'll update throughout the next few weeks as totals change.
UPDATE: Thanks to one large donation overnight, we are now fully funded for our webhosting for the next year! Thank you so much to everyone who shared and donated! We can't wait to keep maintaining and expanding this resource for another year!
THIS MONTH'S FEATURED SHOPS
CAMPAIGN(S) OF THE MONTH:
Normally, each month, we feature 1-3 fundraising campaigns. We like to share these links so that visitors who have the means know where need may be and can help folks in our community who are trying to get access to care or equipment they otherwise can't afford. Because there are so many folks needing help right now, we're going to start sharing a few campaigns a month- in hopes that we can help spread the love as widely as possible. If you are able, please consider donating to one of these fundraising campaign to help those who need it.
I'm Sick, I'm scared, and I Need help
I need serious help. My last attempt at a donation post didn’t go great, but I’m praying this one will do a little better.
I’m Donovan, I’m a 23 year old closeted trans-guy, and I have been thrown around the medical system for the last year with no answers and a lot of bills.
Starting last summer, I started throwing up. A lot. I lost almost 200 pounds in less than a year. It put me in the hospital 8 times. Three times in Dallas, Texas, and five times in various hospitals throughout Utah after having to move back in with my parents because I couldn’t take care of myself anymore. I don’t even know how many times I visited Emergency Rooms.
And after all of this, I have no diagnosis. No doctor knows what is going on. They would stabilize me and send me home. And I’d be back a month later. It took me realizing that every time I was in the hospital I was on my period to sort of start heading in the right direction. I went to an OBGYN and got on the Depo-shot to stop my menstrual cycle. And that actually stopped the vomiting.
For like, 5 months. And right when I started trying to move back into working full time, trying to get back on my feet, I started vomiting again at the end of July. More doctor visits. More bills. No answers. Period comes, goes, the nausea goes as well. I try to go back to work, and it happened AGAIN last week. Sending me to the Emergency Room with severe abdominal pain from the sheer violence of my vomiting. I ripped up the blood vessels in my intestines.
All of this chronic cyclic vomiting has destroyed my tonsils, and caused them to be chronically infected. So I need surgery on the 10th of September. And so, the wonderful full time job I worked so hard for is gone. I have no source of income. My Fiance and my best friend are left with all the bills. And after rent, we wont even have enough for groceries tomorrow.
My roommate @digitalplxguefox has a paypal set up for donations and also takes artwork Commissions. They’re willing to do some to help me. Please help me. I don’t know what to do anymore. Please. Even just 20 bucks so I can be able to buy Popsicle after my surgery on Tuesday would help.
*Please note, this link goes directly to the preferred paypal page to donate.*
Help Chris Fight Inoperable Brain Cyst
Originally this post was for funding top surgery, but now I’m more focused on funding the treatment for the 1.4cm pineal mass they found in my brain in early June.
I have seen a neurologist and a neurosurgeon, both who agree the cyst doesn’t seem to be causing my symptoms- but it absolutely is. Unfortunately with this type of cyst, doctors saying this is incredibly common.
There are only two doctors in the US that routinely remove pineal cysts- one in South Carolina, and one in Houston Texas. I don’t even want to consider brain surgery this soon, so we are exploring other explanations and solutions for my pain.
This cyst in my brain is causing nausea, vomiting, sleep disturbances, numbness and twitching on the right side of my body, short term memory issues, black spots in my vision, and flashes of light in my vision as well. The most concerning and painful symptom is the 6/10-8/10 pain headache that I have had for three months straight now.
I started having trouble sleeping over a year ago, and it is good that I have a reason why, but it is very scary to know that it might grow bigger or become/be cancerous
My Insurance covers most of my medical bills from the hospital, but there are many costs associated with my condition (prescription copays, OTC meds, assistive devices, braces for my legs, pain creams, etc) and since I can no longer work full time, to be able to go back to school in the fall like I want to to finish my degree (even if it’s just online classes at first) I just can’t afford to do that. I also probably can’t afford the Nerve Blocks that they suggested I get on my latest appt 8/2, which might not be covered under my insurance. They could be the solution to my daily headaches.
If these injections (directly into my occipital nerve) work, I would have to get them every 3 months. I’m not sure if that’s a forever thing. Apparently it’s something called occipital neuralgia.
They put me on steroids, they didn’t really explain why but they said I absolutely have to stop to aspirin. Apparently I had to take the steroids to come off the aspirin.
We are stuck in this weird grey area of having our basic needs covered, but with me not working full time anymore it’s harder to stretch funds to afford what some people would consider “luxuries”, (and what were cut from my budget as such) but are now having to be added back in as disability accommodations.
This is all very overwhelming, and while money does not buy happiness, it can buy things like:
- a meal ordered in so we don’t have to cook when I feel sick
-an Uber to a medical appointment so I can take a car instead of the train if the noise is too much
-a grocery delivery if I’m having extra trouble that week with fluorescent lights and can’t go to the store myself
-supplies for my baking website so I can grow my business
Thank you all so much!
Jillian's Living Will
Jillian recently found out the unthinkable - not only does she have cancer again, 2 years after she was declared cancer free- but it’s terminal. Jillian has gone through 6 months of chemo, a double mastectomy with major painful complications, and radiation that left her with horrible burns- just to end up with cancer again, and realize that she will likely succumb to cancer.
The bone and CT scans show cancer has infested her lungs, ribs, spine, chest, etc. Luckily one of the only unaffected places is Jillian's brain, allowing her to continue to share her wicked sense of humor and make decisions for her own treatment. Jillian already had to get a thoracentesis, where they insert a huge needle into area just below her lungs, that is not supposed to have any fluid, and pulled out 600ml of fluid with blood in it, bc it was affecting Jillian's breathing. Jillian is facing day to day challenges and can tell that her health is declining rapidly.
The doctor's haven’t given Jillian an exact time estimate but it’s so bad that they immediately referred Jillian to palliative care and mentioned hospice. Jillian does not have any financial support from her family and is needing to seek help from her close friends and the community to be able to cover her living expenses and medical bills.
Jillian would like to be able to cover the cost of any medical treatment to keep her comfortable and to be able to get back to San Diego where her best friend and biggest support system is while going through these final stages of her life. Some of the expenses Jillian has includes, co-payments, pain management, moving expenses, rent, and all cremation and or burial services. Jillian does not want to leave her twin sister or best friend with any expenses and hopes that she can take care of her needs with the support of this gofundme account.
Jillian was hopeful that she may be able to go on a Bucket List trip, however she feels her health is declining quickly and would really like to make her priority getting back to San Diego and being surrounded by her largest support system.
It is unfathomable the amount of pain and suffering that one person can take. I hope that we can come together as a community and provide Jillian with the support she needs. Jillian has had 34 years on this earth and I pray that her final months will be filled with peace, love and kindness.
In Jillian's own words "Thank you and blessings to everyone who had been kind to me in my life."
K'Xyas Medical Needs
Hi everyone! I was recently diagnosed with Hypermobile Ehlers-Danlos Syndrome. I also have some mental health diagnoses. Like everything else in life, some days are better than others. My doctors and therapist agree an emotional support dog would assist me greatly.
My goal with this campaign is to rescue a sweet pup to be my ESA and then work with a trainer to get my pup to pass the service dog certification. Please consider helping me reach a better life state for me and a sweet pup.
We found the perfect pup! Chloe, a 2 year old lab mix with huge ears and shorter legs. She is calm, sweet and adjusting great! Our next step is training! Please consider donating to help us get to service dog status!
If you can't contribute, please consider sharing any of our featured campaigns on your social media! Someone you know may be looking for a way to give back and could make a huge difference in someone's life! You can also look at previous blog entries to see if other featured campaigns are still in need of help!