I haven’t posted for well over a month. So much has happened and I’ve wanted to write about it all, but when I sat down to type, my heart just said, “meh.” I’ll admit that I’ve been overwhelmed in nearly every aspect of my life lately.
Some good things have happened: I met Tracy (the woman who created the non-profit, Icing Smiles) when I attended the wonderful “Buttercream Ball” in Baltimore, MD. Tracy is so sweet and gracious and amazing and, well, beautiful! For someone to so selflessly give to others… all with the underlying hope of making a sick child smile – that’s a person who has won my heart. Receiving the Yoshi cake in NYC for Ben’s ninth birthday was definitely one of Ben’s most treasured memories. I know I’ll never forget it! It was an honor to talk about our experience and how happy it made all the other kids staying at the Ronald McDonald House. One beautiful cake spread so much joy! Plus, it was a great reason to get dressed up. I’d forgotten that I’m actually quite fun given the right setting. I danced, I enjoyed the open bar, I thought about eating some beautiful looking food but then opted for another trip to the open bar… it was amazing. I also met some awesome people. One new friend – let’s call him Jim, because, well, that’s his real name – has me convinced that he is my long-lost brother. We’re both kind-hearted smart-asses, which is one of the rarest combination in all the land. And we can both quote all the important lines from “Meatballs.” He is my most-treasured new friendship of the Millennium.
Other good stuff: Ben still shows as having no evidence of disease… it seems this low-dose chemo is working for him. This particular study was supposed to end in July or August, but we just learned that it might get extended for another year. This is GREAT because it seems to be working for Ben. Since he has chronic disease, he will most likely NEVER be able to be off therapy because Neuroblastoma has shown us that it WILL come back. We can’t have that. So, an extension is very welcome. As long as his heart can tolerate it, then it’s all good.
Then, here’s where the good gets mixed with the not-so-good. We are officially on Medicaid. It has given me some insight to what government run health care will look like for the masses. And I don’t think you’re gonna like it. Don’t get me wrong, I am grateful to have the coverage… I haven’t had insurance for a really long time and can not afford the “affordable health care” plan nonsense. Anyway, I called all the providers on the Medicaid list of approved doctors and guess what? NOBODY WAS ACCEPTING NEW MEDICAID PATIENTS! I finally found a PA at an Urgent Care who would take Medicaid patients on Mondays only (no joke.) Mondays are Ben’s long days at the hospital, so it was hard to schedule at first. But, I got in and had everything checked.
Here’s what we learned: My thyroid levels are way off. I have suspected arthritis in the hand I use to color. And, I have a freaking lump in my left breast. Thyroid levels will be corrected with new medication. The arthritis medication is not approved by the government, so my coloring days are currently limited. And, fortunately, I can get a mammogram for free because it’s diagnostic. Now, if I actually have cancer, I’m going to blog about all the nonsense I have to go through to get care because I’m sure the government will have to approve if I’m worth saving.
I have to state here that I used to be a social worker, so I really do care about my fellow human beings. I want everyone to be cared for. As for political leanings, I could not bring myself to vote for either mainstream presidential candidate last election because they are both eerily soulless. I don’t consider myself to be Democratic or Republican, but I am left-leaning in my beliefs. However, I’m offended by everyone being offended all the time. We’ve become too freaking sensitive. Me included.
So, when I picked up my thyroid medication yesterday, free-of-charge, I shouted out to everyone within earshot, “Thanks for paying for my medication, tax payers! I’m officially “in the system” and YOU have to carry MY load.” This was in Target, by-the-way. I refuse to lower myself to WalMart standards just because I’m officially poor. (Actually, I like WalMart, too.) You should know that I tried hard to set myself up for a successful life – one where I wouldn’t have to ask others to help me and my family. But, in a humbling turn of events, we have found ourselves in a horrible position. I have given up everything I thought I planned so carefully for in order to care for my children – one of them chronically ill. I’m embarrassed to have to ask for help. But we’re now at the point where the options are limited. I pray that I won’t have to use this for the long term.
But if I do, I’m buying shrimp with my food stamps. I’m entitled to some shrimp just like the rest of the welfare recipients.
Ah. This is the good life. Wanna trade?
That’s what I thought.
Bah. Come to England! All free at point of delivery here 😉 PVs for all testing. Moms aren’t supposed to get sick! But then kids aren’t supposed to get cancer 😦
I both love and hate this post. Love that you have such a positive outlook on life even though you are faced with so many obstacles, yet hate the fact that those obstacles are placed in front of you and your family to begin with. I know the Medicaid system is unreasonably difficult to navigate and quite frankly it shouldn’t be. As for this taxpayer, I’ll gladly help you buy that shrimp any time because you do deserve it and more
love love love love love and more love. and a hug. Get the Jumbo shrimp, girl. ❤ you are in my thoughts and prayers.
Lobster. Get lobster. Rock lobster.
It won’t feed you or your family, and it won’t pay for your meds, but, I still love you. I always will.
I also believe that God loves you too.
I’ve missed you! Ok, now Im liking this Jim guy, you need a great friend /bro. If he makes you laugh, I’m loving it. If I know one thing Sarah, your one tough cookie, and this too shall pass. We are all praying for healing for Ben and all of you. Sending you lots of hugs and prayers. Hang in there girl! The world needs you! /;-p
Love you, Sarah.
Just now catching up, Oh Sara you have to be one of the most wonderful people I know! And YOU are one who doesn’t or wouldn’t abuse the system…you deserve that shrimp!! ❤
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