Why

Yesterday I wrote a post about some negative remarks I received on why I’m fundraising for myself. While the intent came from a cruel place, the question is a valid one which I have no problem answering. Though in moving forward, I suggest if anyone has any questions for me in regards to my disease, my fundraiser, my financial status, or anything else personal, that they ask in a nice manner. A conversation started on a negative note won’t be met with respect. My mom always said “If you don’t have anything nice to say, don’t say anything at all”. While I don’t necessarily agree with that entire statement, it is a good tip. Let’s stop the negativity and move forward positively.

*Why am I fundraising for myself?

As stated in the description of my fundraiser on GoFundMe.com I have been very ill. Over two years ago I was diagnosed with a very aggressive strain of Rheumatoid Disease. In came on with a vengeance, almost appearing out of nowhere overnight. In fact one morning I woke up to such an immense pain in my right arm that I was convinced I’d broken it in the night. Perhaps I fell out of bed and onto the cold tile floor, or slept walk into a concrete wall. I couldn’t explain what had happened, only that it felt like nothing is experienced before.

Over the last two years I’ve been in the ER five times for severe pain flares. I’ve been hospitalized once for a reoccurring heart problem linked to the disease,one that feels like I’m having a heart attack. I have had multiple tests including CATscans, MRI, DEXA scan, X-Rays, EKG, and I’ve given enough blood to fill a blood bank bus. And those are just the reoccurring tests.

I’ve tried over ten different medications for my Rheumatoid Disease, including injecting myself with a needle bi-weekly, and two different forms of chemotherapy. The side effects of the multiple drugs include but are not limited to nausea, vomiting, dizziness, memory loss, sleeplessness, exhaustion, weight gain, irritable moods, medication-induced narcolepsy, low blood pressure, high blood pressure, and many many more.

I had to stop working a year ago for a few reasons, the main one being I had too many sick days. At least twice a week I’d have to stay at home in bed, barely able to reach my bathroom because the pain was so intense. I was getting multiple urinary tract infections because I was in too much pain to get to the bathroom which was a long walk from my office, so I’d hold it longer than I should. And I’d fall asleep at my desk. Once or twice it was while I was ON A CALL. My employers were great guys, we had graduated high school together, so they were much more lenient with me than any b other place would have been. They understood when I finally realised I couldn’t work anymore.

But, see… The thing about not working is that you no longer have an income. I couldn’t pay my rent anymore, or buy groceries. I swallowed my pride and applied for State Food Stamps, which helps me now monthly. I asked also for financial disability through the state, to help me with the things food stamps won’t buy, like my phone bill, cat food/litter, toiletries etc. Well at least that’s what it’s supposed to be for. But it’s really hard to make $250 last an entire month. Especially when my phone bill is $95, and I am going into town 2-3 times a week so gas/parking fees are needed, and Hawaii is stealing from us with $6 shampoo at the drugstore. $250 is NOTHING. And that’s not counting the $4000 in hospital bills I have from last October when I was dehydrated while visiting Texas. That was an expensive reminder to always drink water.

So, you see…life is expensive, especially when your illness keeps you from working to pay for life’s necessities. So what do people do when they need help? That’s right, they ask for it. Hence, my fundraiser.

*Why ask friends and strangers to help? Why not just ask family?

I have. But in a world where a gallon of milk is $7.99 at the store, we are all just struggling to make ends meet aren’t we?

My mom retired from being a teacher in Arizona so she could move permanently back to Hawaii. The plan was for her and her partner to travel more, see the world, and enjoy retirement. But how could she do that with a sick daughter? Though my mom has been home in Hawaii for more than a year now, she has barely travelled outside of Hawaii. She retired from teaching to start her new job here, taking care of me. While we don’t live together, she is still my sole caretaker. She drives me to every single doctors appointment, sits with me during all my tests and treatments, watches me sleep as chemotherapy drips through my IV bag, cares for me when I’m in too much pain to move, picks up my prescriptions, and keeps a catalog of all my medical info including all my current doctors, scheduled visits, notes and referrals.

She retired from a PAID job in Arizona, to move back to Hawaii and look after me for free. And when she isn’t physically with me, helping me, she’s reading medical journals, researching treatments, doing everything she can to find a way, find a cure, find me some relief.

So, to answer the question about asking for help… I don’t need to. She’s done enough. And I’m not going to take the tiny amount that is her own retirement to help me. Mom can’t help me financially, but she helps me in so many other ways that it makes up for it. And the best part is… I never even had to ask. She did it because that’s what family does. They help with no strings attached.

Just like how my sister helps in her own way. She may not be able to help me financially, but she gives me the support I need to keep going. She stands by my side.

That’s all a girl can ask for.

And last but not least…

*What can you hope to achieve?

Are you serious? I can achieve raising money and awareness for my disease!

In a few months I’m about to become homeless. I’ve had a few great friends that were able to very generously help board me and my cats for the past year. All the while knowing I couldn’t pay rent or help with with house things financially in any way. Two couples opened their homes and lives to me so that I could live happily. And I did, for over a year. But all good things must come to an end and I don’t have any other housing options for the future.

I had thought some financial backing had come through for an apartment that was going to be rented for me. Unfortunately, the offer ended up not following through and I’m back to square one. No more friends houses with extra rooms, no family options to house a sick me, and the state unfortunately doesn’t have any programs that apply to me.

Homeless. That’s pretty scary. I never thought I’d be at this point in my life where I literally had nowhere to go.

So hopefully my fundraiser can help raise some money for me to find a permanent place of residence. Put a roof over my head, and a hot shower in the future days to come. Allow my therapy cats to have a place to call home that isn’t just a storage box stuffed 10×12 room that I can stay in “for a bit”.

And I’d prefer not to hear the never-ending statement:

“Oh you won’t be homeless, your family wouldn’t let that happen.”

Because at the end of the day YOU are just speculating. You don’t know what we do and don’t have. Or what I’ve already gone through to attempt to secure a home for myself. Not every family has a money tree growing in the backyard. We are doing what we can to help me survive, on top of having a horrifying disease that had no cure.

So what do I hope to achieve?

I hope to achieve life. It’s something I want more than anything. And I’ll get it, I just need a little help.

Please visit me at:

http://www.gofundme.com/sixthousandsteps

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About sixthousandsteps

In March of 2013, I was diagnosed with chronic Rheumatoid Arthritis and was told my disease was very aggressive. Every day since then has been an ongoing struggle and life lesson on how to stay positive and keep fighting. This blog is a glimpse of how it all came to be, and who knows what the future holds.

Posted on June 11, 2015, in The Journey and tagged , . Bookmark the permalink. Leave a comment.

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