WHY THE ACA IS A DIRE NECESSITY FOR ME

From My Own Little Corner   I was diagnosed with Lupus in 1993, and for the next 21 years, I had no insurance. I used Urgent Care Centers, Walgreen's clinics, and LOTS of prayer, along with diet and exercise to keep the flares under control. I also slept ALOT. Chronic fatigue is a constant companion to those with Lupus.

In 2013, the ACA marketplace opened, and I was up at 8 am, on my computer, attempting to sign up. It took until January of 2014 to get coverage, but finally, after 21 years of living under the constant fear of losing everything over a major flare or organ failure from the Lupus, I could breath again. I have insurance and it was a great policy at an affordable cost for me, due to the subsidies. Peace of mind is priceless.

In January 2015, I was diagnosed with Non-Hodgkin's Lymphoma. It was Stage 4 and in my bones, tissue, and skin. It was a blow, but I had my insurance and I could afford the treatments. I had so many tests, and then the chemo, plus having a drug injected directly into the spinal fluid to protect my brain and nervous system, should this cancer come back (50/50 that it'll return in some form within 4 years).  I am just about 26 months past my last chemo treatment for Non Hodgkins Lymphoma, which really knocked me down. It's been a rough 3 years, but one thing I didn't have to worry about was how we were going to pay for my treatments.

The cancer and/or it's treatments, sent my Lupus out of control, and it's still pretty much that way.  Some days I really struggle just to smile. I wake up and think "I can't do life today, there's just too much pain and too much fatigue." I've been doing this chronic illness thing for 24 years, and I'm tired of it. I'm tired of never knowing if I'm going to feel like doing any of the things I have planned for tomorrow. I go to bed every single night, after taking the medications that keep me from having full body contractions and leg cramps that are so severe my feet turn out and almost touch my ankles, and I pray for tomorrow to be good, to let me be productive, to let me help Dan do the things that need to be done, without paying for it by being flat out down for 3 days afterward. Family and friends would be shocked to know that there are times I don't shower for 3 or 4 days; it's just too much. I hurt and I am too tired to even raise my arms to wash my hair. I'm in the middle of one of those episodes right now. I finally showered yesterday evening. It feels so good to feel the heat from the shower head relax my muscles. Why don't I do that everyday? Well, I have Lupus which really affects my energy levels and is painful. The chronic fatigue had always been the worst symptom. I would have skin issues if I was out in the sun too much, sores on my scalp, arms, upper chest, face, and ears. Now, this nasty little companion has added pain; pain that simmers at about a level 4, but can ratchet up to a 9 or 10 in a matter of minutes. It's not a pain that I can describe. It's an all over ache that is similar to how your body feels when you have the flu, multiplied 3 or 4 times. I also have some other issues, thanks to Lupus. On top of the intestinal problems, the joints that swell and hurt, the Raynaud's Syndrome, and the headache that never really leaves, I have arthritis of the sclera (white part of the eye). This makes itself known through pain and vision issues, such a visual migraines. These cause me to see everything as though it's through a kaleidoscope. It's colorful and interesting, but driving while having one of these is pretty impossible. I also have bruising pretty much everywhere. It doesn't take much of a bump and I'll look like someone has beaten me up. It's a good thing there are clothes to cover things up. The newest addition is petechiae, which is where the small blood vessels under the skin rupture. 

Add to Lupus my latest friend, Fibromyalgia. Now it's a real party. For anyone who doesn't know what that is, it is another auto-immune disease, and this little gem makes just the clothes rubbing on your skin painful. Wearing a bra is torture, anything that doesn't hang loosely on my body, causes me to hurt. Getting a hug, running your hand up my back, patting me on the back, touching my knees together, hurts. I sleep with a full body pillow and no covers. The weight of the covers hurts. I can only sleep in one position, left side, with a body pillow from my ankles to my shoulders. Even then, the only way I rest (and I use that word loosely)  is to take muscle relaxants every single night, an hour before bedtime. Typically, I am in bed 13-14 hours a night. I go to bed exhausted and I wake up tired. Fibro can also cause the spleen to swell. This is my life and it's not going to change anytime soon.

I push through as much as I can. I paint a smile on my face, I joke, I laugh, and when I'm alone in the shower, with no one else around, I cry. I cry because I hurt. I cry because I can't even go outside in the sunlight or if the temperatures are over about 75 degrees.  I cry because my husband has to do most of the things I used to do. He never says a word, and he lets me pretend that I'm doing my fair share, but in truth, I'm not.  What used to take me an hour or so to do, these days may take a week. I worked on the garage this spring. It took me a month to do a days worth of work. It makes me happy to do things like that, but there is a price to pay. Sometimes it's one days rest, sometimes it's a week or two.

As you might imagine, all of these issues tend to produce stress. Stress is the worst thing in the world for auto-immune diseases. It can send you into a flare in a heartbeat. Flares can knock me out of commission for weeks. I take medication for the Lupus and Fibromyalgia. I pray every day that God helps me stay healthy. I've gotten very good at hiding how bad I feel, how tired I am, and how deep my depression can be.

Until now, one thing I didn't have to worry about was health insurance. That is about to change. I got an email from Anthem BC/BS stating that due to what is happening in Washington and the uncertainty of the insurance market, they are dropping most of the plans they were offering in Missouri. They were the only insurance company that offered coverage for the state, since Missouri congress, in it's infinite wisdom  (insert sarcasm font here) decided not to accept the Medicaid expansion. In other words, Missouri basically opted not to participate in the ACA Marketplace.

I know that there are things about the ACA that need to be fixed. It's not perfect, but for people like me, it is a Godsend. I am alive to see my granddaughter, to be a grammy, to spend time with my husband, my children, my sisters, my brother, my SIL, my BILs, my nieces, my nephews, my friends, because I had insurance coverage when I got cancer. I dread the thought of having to go through this again without insurance. We will have to file bankruptcy, sell our home, our car, and probably live with one of our sons and their wife. I can live with the issues from my illnesses, but without insurance, there will be no meds for my Lupus or my Fibromyalgia, and no treatment if my cancer returns. No one should have to live with that hanging over their head, every single minute, of every single day.

Please let your congress people know that healthcare isn't a privilege, it's a right, to just let their constituents have the insurance coverage and peace of mind that they have. It's the right thing to do!

May God bless you and keep you safe and healthy!

~Stef~