There’s No Place Like Home

I AM SO HAPPY TO BE HOME.

Today is the first day that I haven’t felt the trauma from my hospital stay. It sounds dumb and obvious, but I hated being in the hospital. I felt so abandoned and alone. It was the longest time that I’ve ever been in the hospital.

I feel like such a jerk complaining about it because I was only in the hospital for four days. Others aren’t so lucky.

Being dependent on someone else so that I could go to the bathroom was awful. Being trapped in that bed was soul-crushing. And going off of my anti-seizure meds messed up my brain immensely.

I have many complaints about my stay at Dartmouth-Hitchcock. What I expected and how I was treated. Simple things like getting my dietary restrictions correct weren’t fixed until the day I was discharged.

Being hospitalized two hours away from home was not a good idea. No one lived close enough to visit. It would have made so much more sense for me to go to an epilepsy center closer to home; a facility where I felt comfortable and a sense of familiarity.

But here’s the thing: At the beginning of this year, I was unemployed and on New Hampshire-funded Medicaid and COBRA. The COBRA cost over $700 a month. It would have been great to drop the COBRA and just use Medicaid. But NH Medicaid is only accepted in New Hampshire. And not by all medical providers in New Hampshire.

Problem #1: Up until last year, I lived my WHOLE LIFE IN MASSACHUSETTS. All of my medical providers were in Massachusetts. If I wanted to drop the COBRA, I had to change all of my medical providers from Massachusetts-based ones to New Hampshire doctors. Even though I live ten minutes from the Massachusetts border.

This past January, I started to try and find doctors in New Hampshire. This totally sucked. I had been with many of my Lahey medical providers for a decade. They diagnosed, treated, and cured the cancer I had! I felt confident in their care. But I was unemployed, waiting to see if I’d be granted Social Security Disability Insurance, and with a degenerative illness.

1. Primary Care
2. Otolaryngologist
3. Allergy/Immunologist
4. Gynecologist
5. Breast Cancer Surgeon
6. Podiatrist
7. Orthopaedist
8. Physical Therapist
9. Neurologist (migraine)
10. Neurologist (seizure)
11. Pain Care Specialist
12. Psychiatrist
13. Cardiologist
14. Dermatologist

That’s all I had to find. Just fourteen new medical providers. So I started switching. I found a primary care doctor who was recommended as someone who knew what Ehlers-Danlos syndrome (EDS) was. It’s so fucked up that I get excited when I learn that a doctor has heard of EDS. Not that they know how to treat it or anything. That they’ve heard of it and can spell it, well that’s a miracle!

The new primary care physician (PCP) could see me in April. Sooooo, that was great. I continued to cobble together some semblance of health care. All while being wicked stressed about money. Oh and you know, not feeling well. Having seizures, migraines, asthma flare-ups, things dislocating …

Before my April appointment with my new PCP arrives, I become one of the luckiest women in the world. I apply for a part-time job at the Lawrence Library in Pepperell, MA. I’m offered the gig! Yay! I’m a contributing member of society again! I am open about my disability and the staff is accepting and accommodating!

Problem #2: My part-time job puts me over the income limit for NH Medicaid, even though I only take home around $800 a month (MA taxes and union dues don’t matter to NH!). I don’t get any benefits from work. I lose the NH Medicaid. Thankfully, I haven’t dropped the $700+ a month COBRA yet, so I don’t have a lapse in coverage.

But I’ve been moving all my medical providers to NH because of the NH Medicaid. Now I don’t have that coverage anymore. Awesome. I’ve mucked up my health care regimens and it wasn’t even necessary.

And that’s how I ended up in a hospital where most of the employees were from Vermont and told me of how they were scared to drive in “THE CITY.”

I hate the health care situation in this country. I wish that people who are opposed to universal healthcare could live one week in the body of someone with a chronic illness. To experience the fear of not knowing how you’re going to pay for your medical bills. To have to beg for money from your family and friends. To live a half-life because you spend so much of your time at medical appointments/scheduling medical appointments/trying to find specialists/researching your health insurance coverage.

That said, I’m so happy to be home.

[I apologize if the writing is sloppy. I know the tenses are all over the place. Just like that album by the Bangles.]