My family has been my rock through this entire journey. Offering to babysit when I'm having a rough day, offering to clean the house because let's face it a clean house makes anyone feel better, helping out financially when the bills are pilling up, or just having a get-together to make everyone feel better.
And of course, my bestie and froomie has always been there to insipire me that this journey is not over and that there will ALWAYS be a light at the end of the tunnel. A quick caption to this picture is that the bride Lindsie (froomie) had honored me with being a bridesmaid alongside my bestie (Kim). However, about 5 minutes after getting my hair done and looking at the beautiful outdoor venue, I had my first grand mal seizure. However, I hurried back in time just to see the bride and groom make it official and give my froomie a giant hug as soon as she walked back down the aisle. Love these girls so much!
Others may know me as an avid community member who learned my passion and voice for the importance of education regarding nutrition, reducing infant mortality, encouraging and educating kinship caregivers, strengthening families, heart health, breastfeeding, importance of nutrition for the body, early literacy skills and so very much more! I first learned my passion and voice while working for WIC in Vigo County and strengthened it while working for Purdue Extension in Clay and Owen Counties.
However, my health started to go downhill in September of 2016 and my doctor couldn't figure out why. Thus began my journey of being passed from doctor to doctor and specialist to specialist only to be continually called an "unique case". In December, I went to the Cleveland Clinic only to be told that I had fibromyalgia, something we had already known. Every doctor had either not listened to or ruled out the many, many emergeny room visits for extreme pain and problems lifting my arms, or even the fact of my Grand Mal Siezure in October. So then a new symptom crept up of sudden hearing loss and extreme pain in my right ear, soon followed by my left. After hearing test after test, it was ruled that there was no problems with my inner ears and it was all nuerological. Then came the neurogenic bladder. This has caused me to have my urethra catherized and dialeted twice and now it has been scheduled for every six weeks. I see a cardiologist, rhuematologist, neurologist, opthamaologist, 2 primary care physicians, psychiatrist, pain management specialist, 2 orontologists, and many more.
The diagnoses that I currently do have are: fibromyaglia, dysfunctional autonmic system (this is the system that regulates the things we don't think about in our body, like our heart rate, breathing, bladder control, blinking, sweating, etc), dysfunctional autonomic cardiadic diabetic neuropathy, sleep obstruction, elevated right ventricle pressure, IDDM, Graves Disease, Severe Depression/Anxiety, Severe Migranes, neurogenic bladder, hearing loss, macular degeneration in right eye (from medicine), Cataracts, and working dx of Systemic Lupus Erythematosis and Multiple Sclerosis.
Also came the stuttering and confusion of words. My kids made a game out of it by guessing what I really meant. As in when I said go put your shoes on the couch, they knew that's not what I meant so the first to figure out that I meant put your shoes on the stairs "won"! My kids both already have PTSD and high anxiety. Now that they see their mom who use to work in two counties and worked 45-60 hours a week doing program after program, now laying on the couch writhing in pain but trying to make everything "fine"...they know something is up. So now they are back in therapy every other week and we read a lot of books about "why mommy hurts".
Anyway, I digress. I have been through every test imaginable, from two tilt table tests, 4 week event monitor, sleep study, EKG, echocardiograham, lithmus paper in my eyelids, optical steroid injections and so many more than I can't think of at the moment. I take around 20 pills in the morning and about 15 pills at night. My head/eyes hurt so bad on most days that you will find me at some point with an ice pack on top of my head, behind my head, and on top of my eyes. On my good days, I use my glitter gold cane (have to keep it classy!), on my not so good days or days where walking is involved I use my walker/wheelchair, and on no good very terrible bad days, I will be on the couch sleeping for about 22 hours.
So, why have I started a go fund me? I was "separated" from my job at Purdue (even though found to have disablities) in April. At that time, my super amazing husband (I can't rave enough about this man and how much he has given up and done for our family) left his job to become my primary caretaker. That's right. As a person who thought I could and would not only change my community but change the world, I can now not walk to the bathroom, up the stairs, outside, or pretty much anywhere without assistance/supervision. I trip over things that aren't there. I shake when standing. I wobble (and not the good wobble I use to do with my WIC co-workers) when using my walker/wheelchair. So again, I digress. This fund is for two purposes:
1. Johns Hopkins: My PCP is trying to send me here to finally crack my "unique" case and have a team focus around my case rather than have me chasing them around the world. He is sending me with the working diagnosis of Systemic Lupus Erythematosis and Multiple Sclerosis. Only problem is, they most likely will not take my insurance so we are trying to raise funds this way.
2. Previous Bills: We still have over $6,000 in previous medical bills. My application for long-term disability through Cigna through Purdue was denied. It was denied because while I had all of these doctors, there hasn't been a clinical diagnosis! Ha! That's what I've been saying is the problem all along....perhaps they feel my pain? No...no they don't at all. Additionally, we have zero income coming in. Yes, we are on food stamps and Medicaid. We moved into my mothers house and our house is up for sale (626 North Meridian, Brazil, IN 47834 if anyone is interested in purchasing it). So, we are traveling back and forth to get the old house ready to sell while settling into my moms house.
Again, the only ones that have seen, feel and experience my pain are the ones mentioned in the beginning, because they have been alongside this journey and are just as frustrated and distressed as myself and my husband and children are.
So if you have any donations to give, even the smallest count, please think of the cause as I am grateful to each and everyone of you for your donation. And if you are unable to donate monetarily, then please, share this with your friends, because perhaps this story resongates with them.
And as always, much love, light, and prayers are always always appreciated!
Thank you for reading......Much Love,
- Krystal Whittington
- TOPS Friends
- Shannon Nevins
- Penny & Ben Karn
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