May 11, 2021

Hello! A quick update:

Thanks to your generous donations, I was able to purchase the lift for my wheelchair! It uses the wheelchair’s own battery to lift it into and out of the car. I will get a video as soon as Alan has put it together and gotten it into the car.

Meanwhile, I finally had a chance to see a new geneticist. I am not leaving my current one; she just only handles connective tissue disorders. In 2019, she referred me to a neurogeneticst, but I could never afford the followup. I finally got full financial aid this year for an appointment through another provider. I was hoping to use a genetic testing service that has financial aid as well, but because I will require full genome testing (due to the number of issues in the family history/family tree and various other questions … she chose a different lab. This is looking to be probably around $2500-$3000 and we are looking for:

1. Hereditary Spastic Paraplegia — confirmed in my family history and I have symptoms, but then I also have syringomyelia so it’s hard to say
2. MSH6 or Lynch Syndrome, which is confirmed in my family history as well. This mutation causes a variety of cancers.
3. Mitochondrial disorder
4. I have a VUS for Classical EDS, though my diagnosis remains hEDS until we know more about my VUS. But we may find TNXB or something else — who knows? The geneticist told me the note on my mutation on CLINVAR suggests it’s likely pathogenic and in the future (who knows how long?) my diagnosis could possibly (or even likely???) change to Classical. I guess only time will tell. It wouldn’t change my care, so there is that.

We are still trying to repair the house after derecho and unfortunately, our deck needs to be replaced from the severe damage. This is extremely costly and it’s also the only place on the house where a ramp could be installed. This means we must get it repaired to get a ramp … so the fundraising goes on. Thanks so much to all of you for helping! I appreciate it more than I can say!

April 16, 2021

A HUGE thank you for all of the generous donations! I am not sure how to see each one or get contact information to send a proper thank you individually so I hope you see this! I also tweeted one out. I appreciate it beyond words.

I am now over 1/10th of the way to new hearing aids! Amazing! I will keep you posted on that goal. You are the best for sharing, RTing or just saying hello!

April 6, 2021

Hello everyone! Just a quick update and thank you to all who have chipped in! I paid for an appointment / pain assessment that led to a prescription for LDN, which I started several weeks back and am still titrating on. This medication is very interesting and works by causing your body to release more endorphins, which relieves pain and inflammation. It can also help with fatigue and brain fog. So far, it’s helping me — a subtle, but real boost! So thank you!

Donations will also be put in savings toward new hearing aids, which cost $10,000 (last time I had a program where I got 50% off so I am looking again for something like it for the replacements). I have about … 1/10th of that. It’s a great start–amazing!

We continue to work on derecho repairs. I got referred to a nonprofit that builds ramps. I will apply and hopefully they can accept us into the program. They do this work for only the cost of lumber! BUT this all depends on our deck getting repaired, too. So a lot hangs in the balance, as usual.

Thank you all much for your generosity and kindness!

February 26, 2021

Just wanted to update that we received some unexpected financial help that will get me some needed appointments. I mentioned the wheelchair earlier (hooray!) and I also received some funds that will make my ECHO & a few other big appointments possible.

We talked to a stair lift company about getting one installed in our home and there is a USED one! That will be much, much cheaper (we’re talking thousands cheaper) if still available when we are able to book it (if not, then we reassess or wait for another refurbished one). However, we will still need help as we have the staircase upstairs and downstairs. It adds up quickly.

The used model that would fit our upstairs staircase requires some alteration to a few of our steps, so that is something to consider, but the way the company explained it, it will be seamless. It’s apparently common with older stairs. With the pandemic, and with derecho repairs, we are not sure when this would happen, but I am hoping for later in the spring. *fingers crossed* *toes, too.*

Then we would be looking at repairing the deck (also damaged in the storm) so we can finally install a ramp there. We had someone out to examine the damage and we will see what insurance says. The ramp would still cost thousands and would not be part of any insurance coverage, but rebuilding the deck after derecho damage offers a chance to make it more compatible with one when the funds are raised.

Later goals (these will depend on the financial picture quite a lot) are to remodel the bathroom for accessibility. That will be a long way off due to funds.

Much of our money right now goes to repairs for the disaster (insurance covered a lot, but we have a lot out of pocket as well, which is delaying home mods) when we are able. The goal of this fundraiser is a high figure because home mods and the things I need for my syringomyelia cost a lot of money. We keep inching our way toward it, though, thanks to all of you!

We also have been making some changes that aren’t structural, but increase safety here.

I will keep updating as I receive estimates and repairs and home modifications are done.

December 17, 2020

Hello Everyone! I am going to be adding some specific needs to my Help Hope Live page. They added a feature for it. Here is the breakdown (and I will add soon officially also!)

1. Lift for fold & go wheelchair to get it into the car: $750
2. Cover for fold & go wheelchair when folded: $149.95
3. Neomano Neofect glove that restores grip using electrical signals: $2,000
4. Chair Lift: $1,000 – $3,000 depending on model/installation
5. 3x $75 copays for upcoming visits (plus since deductible won’t be met, I will need to cover the rest, not sure on exact amount yet)!)
6. Echocardiogram (not sure of amount yet)

December 16, 2020

I have a HUGE update! I have ordered the Fold & Go electric wheelchair! I will have photos soon. My doctor wrote me the script & letter of medical necessity, which I will post in the photo albums. It’s going to make such a huge difference in my life!

The next thing I am aiming for is this cyborg glove. My hands / grip are weak and dexterity can be an issue. This glove would allow me to grip pens and brushes better and do more with PT for my strength. I am trying for a combo of fundraising and grants. shop.neofect.com

We are working on clearing the studio space, which was filled to the brim when mom moved in after my father died. Once that is complete, we will be hopefully looking into contractors to get bids for the stair lift and we can update here with how much that will be.

Meanwhile, repairs on the house post disaster are coming along. Once those are complete, we can get on that ramp building, too!

December 8, 2020

Hello everyone! Karrie still needs a power wheelchair as a mobility scooter typically requires balance they don’t have. There is a great one made by Fold & Go that runs in the $3,000 range on sale. They also make a lift to get it into the car for $750. This is a great option because it’s far less expensive than a typical custom chair with power + folds so it doesn’t require an expensive wheelchair van. It also can handle an incline, uneven terrain, and even harsh weather! So if we can get this fundraiser to ~$4,000 asap, this will be a reality and Karrie will have more access & independence. Thank you for any amplification and contributions! This is the chair: www.foldandgowheelchairs.com

December 3, 2020

A huge thanks to everyone who chipped in so far! I am beyond grateful. Through Help Hope Live, I have managed to stay insured and get the medications I need, which are often quite expensive. Some of our goals are much bigger — especially home mods for safety. Last night, I almost fell down the staircase (my wrist is injured from catching myself on the opposite wall, but I am otherwise OK), and it’s even clearer how crucial it is that I get the stair lift for safety –and for access to space for my art. Thank you SO much again!

November 19, 2020

Hello everyone! I have been SO slow with updates, and I am very sorry for that! I haven’t been feeling well and have been dealing with the after effects of the derecho that hit Iowa as well. We at first thought our house was ok, but it turned out to have $40,000 or so in damage, so lots to do! Anyway, THANK YOU so much for the help. I really appreciate it! I don’t have much to update other than I am still insured thanks to YOU! And I have been able to pick up my meds.Thank you, thank you! It means the world!

July 30, 2020

Just a little update. I finally had some blood work done to figure out the cause of this crushing fatigue and increased pain. It’s different than the kinds of fatigue and pain I usually get. Earlier in the week (or was it last week already?), when I took a very short walk with Alan, I was unable to get home and he had to go get the car to pick me up. That is SO not like me!

I am being sent for another echo as well, which is long overdue as it is. Not much news. I just want to feel better and get back to making art.

July 25, 2020

Thank you so all so much! I wish I could click on individual messages or donations and send personalized thank-you’s! This platform doesn’t have that feature, so I hope you all see this!

Quick update that I am being sent to the infectious disease specialist as I cannot seem to get better. First, I need to go through internal medicine, so I made that appointment. It’s end of August and I need to hopefully move it to sooner. In the meantime, I am awaiting another test result. This means I may finally start getting some care to get better from this illness + infections on top of it that have not resulted with multiple rounds of antibiotics.It’s going to cost money, though!

In the meantime, I have obtained my uncle’s and father’s records to take to the neuro geneticist, but I was still waiting on the records from my father’s cousin. Those are coming soon. They will help the doctor because insurance is not going to cover genetic testing for the other condition in my family without some kind of documentation. This would be on top of the EDS.

Hope you are all doing well and staying safe. Wear your masks!

July 20, 2020

I have had a few interesting responses to my campaign along the lines of “well you can walk, you don’t need a wheelchair or mobility scooter.”

I’ll take this as a chance to educate you about the complexities of mobility!

Did you know many people who use a wheelchair or scooter actually can walk? Maybe just a little, or maybe only on some days, but they can!

I exist in a kind of between space … I can walk, but I actually can’t walk, at least not without significant aid. I have an ataxic gait and recurring falls and injuries (including dislocations due to the torque on my ankles and knees because I also have Ehlers Danlos Syndrome).

I have lost vibratory & other sensation in my legs and feet, which means I also don’t get sensory feedback through them while walking. Doesn’t sound like a big deal until you lose it! Imagine not feeling your steps. I wish there was some way to replicate that for you.

Even though I have lost protective sensation through my arms, and hands, I feel blunt touch but not pinpricks or burns. It’s due to where my spinal cord is getting damaged and is called “dissociated sensory loss.” Different parts of the spinal cord handle different sensations so I don’t feel much (or at all) cuts or burns, but I can feel a touch. I know, it’s weird, but it’s a core feature of syringomyelia. It’s why when I got tattoos (prior to diagnosis, so I had no idea why at the time), I didn’t feel much of anything.

Anyway, I wind up kinda tapping or even kinda pounding (not really pounding but not sure of the right word here) my cane a lot to get grounded, which is … not great for my wrist and fingers cause again: EDS. It’s also common with oscillopsia to do this as I need to get a feel for where things are/the ground/where I am stepping. I kind of feel my way. I mean, I can see, but I can’t see (another weird complexity!).

This presents its own problem when you consider that my thenars have wasted from syringomyelia, significantly weakening my grip. The cane can sometimes be very hard to use. I do have a rollator and it is better, but I still have times where I am going to need more — more and more it seems.

There are also ambulatory wheelchair users who can walk without gait disturbances or even without another aid. They have valid reasons for needing a wheelchair or scooter, too (pain, weakness, fatigue, etc.)! It might surprise you how many wheelchair & scooter users are ambulatory, actually.

Neither situation is worse or better — just different.

Also, I can’t drive and there is very limited transit here without great access. Paratransit exists, but it’s its own problem (often late or without slots, very expensive, you have to book well in advance). Sometimes, I’d like to hear last minute about something or just feel like going out and … go! Like everyone else. Or be able to go on my own, have some alone time, enjoy the journey. Or not pay outrageous prices every time.

I hope this helps to explain it! Thanks so much for reading!

June 23, 2020

Thank you so much for all of the kind messages! I wish I had a reply button to send a message to each of you, so I hope you can see this. Thank you SO very much.

Just a quick update: I have been sick since early March. Just resting at home & was instructed to quarantine. Otherwise, I am awaiting genetics, immunology, and neurology followup.

It’s still a priority to get home modifications complete, such as ramps and something to make stairs safer–whether it be a lift or stair steady.

I’ve had significant flareups of my chronic conditions, probably due to this illness. Trying to manage it all.

Thank you all SO much again!

April 20, 2020

Just a quick update that I was finally tested for COVID19. I have a followup on Tuesday (via telemedicine).

April 11, 2020

I am sorry for the delay in updates! I hope everyone is doing well and keeping safe! Generous donations helped pay for my most recent insurance premium, and I cannot thank you enough! They also helped pay for medications, which was so helpful in this time of COVID19 as I did manage to get a few months of some of them to avoid too many trips to the pharmacy.

I apologize for the delay in updates. I came down sick, possibly with COVID (tests in Iowa are very hard to get) or possibly with some other respiratory illness. Flu & strep were negative. It feels like pneumonias I’ve had before but also very different. The fatigue & lung pain have been crushing.

I am working toward paying May premium and hopefully getting an all-terrain rollator since the sidewalks where I live are not in good repair. All appointments are currently on hold, though I am also fundraising for a telehealth appointment for a genetic counselor and some further testing. Otherwise, just resting for now.

So sorry I can’t write messages to each individual. This platform shares your encouraging messages (thank you!), but there isn’t a place for me to click to reply. Please know how grateful I am for all your help. STAY SAFE & Stay Home if you can! Much love, Karrie

January 20, 2020

Just a quick update that I was able to pay my February 2020 insurance premium and I posted the receipt in a photo album. This was made possible by my fundraiser as a large premium increase is threatening to force me to cancel coverage. Every month is going to be tenuous like this, I fear, though hopefully I can keep it going each month while working toward home modifications, testing and mobility aids.

One huge problem right now: I am fighting with insurance over my epilepsy medication, which is due for refill. It will cost $1,122 until insurance processes an appeal. They covered it all through 2019 without much issue, but for some reason, they are not processing the appeal in 2020. It’s odd because the formulary for 2020 shows Tier 4 with no Pre-Auth, and yet, they are treating it as non-formulary. I can apply for assistance, but it takes time to process the paperwork. Stopping an epilepsy medication suddenly is dangerous. Seizures, death, etc., can result. And my medication, while amazing, is my last ditch. Others either didn’t work or caused severe psychiatric & physical side effects.

Hopefully I can get this resolved soon, but I am running out of medication, and last time it happened, I had seizures that caused a host of issues (losing a tooth, cracking others, injuries, including head injury).

THANK YOU SO MUCH for boosting, commenting, donating, and just generally being so supportive. I appreciate it more than I can say.

January 17, 2020

A huge thank you to everyone who has boosted, donated or said a kind word!

Help Hope Live has been incredibly supportive to work with & they handle all the funds so you know they go exactly where stated.

We are aiming to get some videos and photos posted soon to show the plans for the modifications. At the moment, we are in a snowstorm and hunkered down indoors.

Hope you all are safe and having a wonderful new year.

December 6, 2019

Last week, the landscaper came to slope the sides of the newly repaved driveway. Attached is a photo. This was several thousands cheaper than retaining walls + with the wet soil here, will not have the issue of bricks coming loose like they have done to all our neighbors. I will post the receipt in my albums (it was $2140), and we are focusing on raising funds to cover it, as it was an essential component of the repave.

We are also focusing on insurance costs for 2020. We have a large increase in our premium and it could lead to losing insurance. We are hoping to get at least some of that increase covered each month as well as medications, genetic testing, MRI angiography, and a GI visit.

Other important plans for 2020: Chair lifts, a ramp, and access mods to the bathroom and kitchen–if we raise funds, of course!

September 23, 2019

Thank you so much for the support, everyone! RT’s, kind words, support and donations are all amazing! We are on the October schedule for a concrete contractor for half the driveway (all we can do for now on current budget–rest will come later).

So now the challenge is getting as much money raised toward the sloping as possible. The sloping occurs along the sides of the driveway where the re-grade will leave a lot more land exposed. We had looked into retaining walls, but they cost twice as much and the neighbors have had issues with theirs due to the wet and mushy land in this area. Luckily, a landscaping contractor across the street from us says we can do the sloping instead so that is what we will do. It’s an essential component of the driveway regrade/repave, but done separately since it’s not concrete. It will be approx. $3,000 (vs. $6,000 for retaining walls, yikes) so aiming to get at least $2,000 more in donations this week if we can! Thanks so much!

In the meantime, my appeal for coverage of my $3,000 genetic test was denied so that will be a large bill or payment plan and we will focus on that next if need be. I am still fighting it with the state.

Thanks for your support! It makes a huge difference, and I appreciate all of you more than I can say.

August 15, 2019

Thank you so much for all of your support so far! Between generous donations, RTs, Facebook shares, or replies of support, it all makes a difference.

I apologize for taking so long to write a thank-you note and an update–I wasn’t sure how to do it & then we had an intense and busy couple of months with my father in hospice. He passed away August 1st.

As for the house and my health … We had a contractor come back out this week and discuss ideas to bring down their bid with some changes to their initial plan. This would be for about half the driveway, to address the most pressing safety concerns with the grade and the shattered concrete. (The rest needs work, too, and is a problem for wheeled mobility aids also, but we have to get these pressing concerns addressed now & can do the rest later). It looks like we can get on that schedule! So that will begin in October.

To make things with the house go even better, I would love to see the fundraiser get to at least $6,000 as soon as possible because in order for the driveway to be done, we must also re-slope the lawn surrounding it, which is another $2,000-$3,000. Yikes! But it’s way cheaper than retaining walls & the neighbors did it with good results.

$10,000 even better so we can get going on chair lifts as well.

Once the driveway is done, we can start working seriously on the ramp out the back–with donations, of course! It didn’t make sense until we had the driveway plan in place since I would roll out and … be stuck.

Irony–when the contractor was here, they witnessed a fall off the step. It was almost like an exclamation point on how urgent this really is.

As for health, due to the pressing needs with the house, I haven’t been able to afford my imaging or appointments, though I do have a referral for a specialist in genetic neurological conditions as it appears I may have a second genetic condition that runs through my family as well. (More on that when I know more.)

My mobility has decreased and I’ve had injuries and falls, as well as increased pain. A big contributor to injuries and pain is the grade of the driveway, so it will be a huge relief to get it addressed.

That’s it for now. We will get some videos up soon. We were so busy with my father in hospice for Alzheimer’s that we didn’t have a chance to film any.