Wow Readers, it’s been a good three months since my last post. Thank You for having hung in with me. I just had a chance to re-check my statistics from the time frame I was absent and was pleasantly surprised (ok and a little shocked) to have found many of you still reading the blog. Reader Love <3 , as I send out huge Hugs to all of you.
The above lyrics do NOT; I repeat do NOT have to do with a guy. At least not in my reasoning for posting them in today’s blog. I’m sure when Toby wrote them it’s entirely possible they were in fact written about a romance…*shrugs*
Two years ago I stopped sleeping. Nobody knew why or what had led to it. Determined to get back on track I did what anybody in my situation would have done, I went to my doctor and asked for help. I was given Ambien for sleep, and told to go see a sleep specialist. The closest I found was on the opposite side of the island from me, a good hour train ride or a $22 dollar each way cab ride. Have I mentioned I’m far from rich? Those cab rides bleed me dry, and running on several days of no sleep taking the train was not always the safest option. A sleep study was recommended. That first one was a trip. You take one sleep deprived woman, stick her in a strange room with no windows, and then attach machines and goop all over body–then tell her to “go to sleep”. Here’s the reality of that for anyone who’s never done a sleep study. Your mind’s going, “Ok, what if I have to pee?” “God, I really hope I don’t unhook one of these machines.” or my favorite one…” What if I don’t sleep? What if they get nothing?”
I survived that first study, and the results came back as Apnea. I once again went back to that same far out of the way sleep doctor, and was fitted for sleep retainer. It looks like a double retainer -bottom and top, clicks in the back and juts out your jaw, forcing in air. In the meantime, I’m still not sleeping. With that particular sleep doctor we went the homeopathic route- Valerian, which upset my IBS stomach terribly and did nothing for the Insomnia. Sleepytime Tea, Melatonin…nothing working and my frustration growing with every strike out we had.
Insurance did not help, and office staff seemed to not understand my struggles. At one visit, where I was once again on several days of no sleep, and so broke I had no alternative, but, to take the train, I was turned away for not having a referral…which I wasn’t informed about. After calling my primary and finding myself in a surprise screaming match with the Office Manager, my pressure skyrocketed. Knowing I was not feeling well, I went back into the Sleep Specialists Office, and asked to see the doctor for five minutes. That Office Manager turned me away; she wouldn’t even allow him to check my vitals. I ended up having to figure out where the bus was and taking myself to the ER, where everything ended up being up, and I was stuck on an IV for an hour.
That was the last time I went back to that sleep doctor and that primary care. In between I had a second sleep study with the mouth piece. It showed the Apnea corrected. Great, but, why the hell wasn’t I sleeping? At some point, I lost the mouth piece which never did anything. The nights of Insomnia continued and so did my tears.
I’m a fighter; I’ve always been one, as life didn’t always give me a choice. Now, wasn’t the time to stop fighting, but, that in no way, shape, or form meant that it was an easy battle. Actually, if battles were meant to be easy, we wouldn’t learn nearly as much as we do from them. When I have my bad days over lack of sleep and recent life events, and there have been many, the tears come down in waterfalls and the questioning over “Why?” come down in buckets.
I worked with a Psychiatrist for a few years trying to find something to put me to sleep, but, only one thing ever worked – Ambien. Every time we’d try something else, and it’d fail, I’d hold out hope that maybe something else would work, and then that would fail. Finally, he just said, “I’m sorry; I don’t what else to try. There’s nothing left, we’ve tried everything.”
Ambien and I do have a painful story together, one day when I’ve figured it out myself; I’ll tell it to you.
Around the time of Hurricane Sandy, I started with another Sleep Doctor. There is no way to describe him and his staff except dangerously awful. I had one appointment with him where I wasn’t listened to, he forgot about me for a month- his words and I was told after he prescribed one medication that was basically Benadryl – that there were no other alternatives. I was also told I had a fat neck.
I cried hard over that, which in turn caused more sleepless nights as I wondered if I’d ever sleep again. In the back of my head was the constant voice, “This is crazy. I refuse to accept that I will never sleep again…”
I took a deep breath and started looking off island for a sleep doctor. If I had trouble getting to the opposite side of the island on several days no sleep, how the hell was I going to do the city? Maybe there was something I was missing. Maybe the city would be better. Hope…must hope.
As I perused the pages of Healthgrades at a Sleep Doctor, I noticed his second address. Seaview. Several days of no sleep makes your thoughts a little jumbled, so at first I thought he worked at my Grandmother’s Nursing Home. Finally, I just said, “Screw it, just call.” I nervously called the 212 number, and I guess the desperation in my voice came through to the Office Manager, who gave me an appointment that afternoon at the Staten Island location.
He listened, and he didn’t want to shove pills down my throat. After two visits where I explained again, not sleeping. HE LISTENED!!! I had another sleep study done, and the results were what I’d been telling people all along. Less than 3 hours of sleep. I was both relieved, and devastated. Relieved, because finally there was scientific proof of what I’d been saying for years…”I’m not sleeping.” Devastated, because there it was in Black & White, and with the Sleep Study being at less than 4 hours it was inconclusive. Immediately, he wanted me to go to sleep. I was scheduled for another study and told to take something before I came. I had another study with 1 Ambien and a Bi-pap, that showed 4.9 hours of sleep and not straight. 2. something here…., wake up, 2.something there.
When I got the results I cried. Especially when the next words out of his mouth were, “I’m sorry. I don’t know why this is happening, and I know this is not what we wanted.” The good thing to come out of those results was REM sleep, which I hadn’t gotten in a long time.
I’m a getting a CPAP on the 13th, which I’m hoping will lead to more REM sleep.
I’m tired of people telling me they’re sorry. I’m tired of people thinking they have the slightest clue of what I go through. I’m tired of people thinking I’m strong all the time–no, I’m not. I’m human. I’m tired of people not being there. I’m tired of people doubting me. I’m tired of assumptions and bullshit. And most of all, I’m tired of being tired.