Why I will never have a normal life

A simple mix up at the doctors office has affected my whole week. I was at the doctors office a few weeks ago and they forgot to refill my prescription. I realized it as I was leaving, so they told me just to have the pharmacy fax in the refill. The pharmacy did so, and the doctors office denied the refill. I have now spent the last 7 days without any of the medication that allows me to sleep. Ergo, I have spent the last seven days without sleep. Every day I call the doctors office, every day they fail to fill the prescription. I  spend my day calling and calling and trying to get heartless employees to help me.

Yes, my doctors office is staffed by incompetent morons, but the reality is that this situation is not unusual. It happens to everyone who needs a medication just to survive. Which is why despite the fact that I am somewhat physically functional, I will never live a normal life. I need medication in order to sleep and I will need it for the rest of my life. Which means that my life is always going to be in the hands of someone else. Whether it’s a doctor, an office staffer, a pharmacist, or an insurance company. They all have power over me. I can dream about living a normal life, getting a job, having a social life, sleeping when I’m tired, but I can never count on it because I never know when the medicine that keeps me functional is going to disappear.

I rarely cry about being sick. I rarely cry about anything, but this realization had me in tears. I hate the someone else has so much control over me. I hate that I can’t sleep unless the useless idiots from my doctors office decide to come through. I hate that there is no recourse for me. I hate that there isn’t another doctor with a competent staff for me to go to. I hate that I can’t ever be normal.

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13 thoughts on “Why I will never have a normal life

  1. You are not alone. It is so frustrating and also reduces me to tears too. I keep hoping medical staff will read patient's blogs and realize the power they have to really screw up their patient's lives.

  2. I had the same problem for the last week and a half trying to get my Lyrica refilled. I really agree with what you are saying. I wish I could send this blog to them but they would probably blow it off or get mad.

    1. Wow, I hope you were able to get it. I know Lyrica is one of those drugs you can't just go off of, I can't believe they would do that! I don't know how they justify ignoring people's medication needs, I just can't imagine treating people like that.

    2. Hi, They finally did renew my script. There was some kind of miscommunication between the Dr's office and the Pharmacy. When I get a survey from a health care facility I make sure to fill it out and be honest. I just got shot's in my back and things were great. I sent an e-mail to the Dept manager letting her know how happy I was with the job they did. She was so glad to get it.
      We really are in such tenuous situations, It's scary.

  3. Oh, Chronic Mom! I SO feel your frustration! I'm a fellow fibromyalgic and I TOO must have 2 meds in order to sleep. MUST HAVE THEM! Due to the fact that they're controlled substances, I cannot have more than 30 of each in my possession. I must carefully watch when my supply is getting low.

    The pharmacy faxes in the refill request in the morning. The nurse at the doctor's office deals with them at the end of the day. HOW many times has Nurse Ratchett (think "One Flew Over the Cuckoo's Nest") ignored my RX requests til the next day or the day after?

    If the pharmacy does not hear back from the dr office by closing the day they fax it, they'll put another fax through the next morning. When I complain about this unneccessary delay, the nurse will say, "we never rec'd the fax", then I call back the pharmacy and they check their records, yes, they've faxed it several times. I'm sick and tired of being dissed and lied to!!!!!

    I have BAD history with Nurse Ratchett! I've tried to write it here, but keep getting an error message that message can't be over 4,096 characters. Will try to continue below.

    1. Oh my goodness, I HATE dealing with controlled substances. They are always a nightmare and I can't help but think that the people they are trying to keep it away from probably have no problem buying it on the street. Where those of us who are sick and actually need them spend our lives being hassled!

      Nurse Ratchett is a perfect for the kind of people I have to deal with! I'm so sorry you have to deal with this kind of crap too. It's unbelievable what we have to go through just to get a little help.

  4. (continued from above)A year ago this summer I took in a form from the DMV, so I could apply for a handicapped parking plackard for my car. When I told her what it was, she snapped, "You're just WASTING your time. Doctor's not going to sign this."

    ME: "Why not?" NR: "Because you're NOT handicapped!" ME (tearing up with frustration — that's crying tears. I TEAR the place UP later, LOL): "Yes, I AM most certainly handicapped! I have severe fibromyalgia, and some days I can barely get out of bed, much less walk." NR: "I don't CARE! If you walked in here on your own two feet, without a wheelchair or a cane, you're NOT handicapped. It says here [on the form] you have to be unable to walk 200 feet without assistance" ME: "I LIMPED in here. I'm in horrible pain all the time—" NR: "I DON'T CARE! The state is cracking down on all these people who aren't handicapped trying to get these permits. We can't bend the rules for YOU or we'd be in trouble with the state!" She started to hand me back my form, but I said, "Well, throw it away, then! I guess I don't NEED it!" And I stormed out of the office…

    …And drove straight to the DVM. The lovely young woman there was aghast that the nurse wouldn't take my form. She said that it was the doctor's call, NOT the nurse's. She read over the rules to me. There was a list of factors to help them determine eligibility. It said "check any that apply." Just ONE of the factors was "can't walk 200 feet without assistance." Another was "Patient has neurological pain that makes walking difficult and painful." (DUH! If fibro isn't neurological pain, I don't know what is!!!!) Then the doctor had to write a comment why he thought patient needed a handicap permit.

    The girl at DVM said only one condition needed to be checked. She gave me another form and urged me to try again. Then another employee said, "wait a minute — those are the OLD forms. Take in one of these new ones." It looked exactly the same as the old one, but the "can't walk 200 feet without assistance" option had been removed. Later I looked it up on the DMV website and it said the rules had changed on January 1st of that very year. I printed out the evidence for next time I went to the doctor.

    1. That is so horrible! How exactly do they expect you to get to the DMV in the first place? If you are as disabled as they "require" you to be, then surely you wouldn't even be physically able to jump through all those hoops! It's ridiculous what they put you through.

  5. (cont from above) This second time, when I filled out the form, I included a very nice note to the doctor explaining why I needed a handicap permit. He has been my doctor for the past 15 years — he knows my special issues, even though he knows very little about fibro. I placed this material in a sealed manilla envelop with the Doctor's name on front and under in parentheses (Private Medical Information from: my name). I handed it to the receptionist and she put it in the doctor's mailbox, then went off to do something else. As I was waiting for the elevator, I looked back. I saw a nurse (not Ratchett) come out and take the envelope, look it over and start to open it. Then she thought better of it and took it back to the nurse's station.

    A couple months went by. I'd completely forgotten the incident until I had to see my doctor again for some blood tests. I asked him if he'd had the chance to review my DMV form for the handicapped permit. He couldn't remember ever seeing it, and he rolled his eyes and mumbled, as he left the room to go check, "Some of the staff around here…"

    He sent a nice nurse in to explain — explain what? That he never received it??? When I started telling her what was going on, Nurse Ratchett overheard and barged into the room, practically screaming, "I told you BEFORE! What don't you understand? YOU ARE NOT HANDICAPPED!" So I calmly (perhaps smugly) got my print-out of the new DMV rules and showed her that as of January 1st, her 200 feet rule wasn't even on the form! I tearfully begged her to understand what living with severe fibromyalgia was like." NR: "I don't CARE! The rules are the rules!" ME: "You don't know what it's like to go to the store and there are 8 or 10 handicapped parking spaces up front, not being used, empty — but I have to park way out in the parking lot and I can barely drag myself into the store." NR: "WELL! If you're so SICK, you should be home in bed, not out running around shopping!"

    I DO NOT shop for fun! I have no ENERGY to do anything FUN! I come to town once a week to get groceries. Period.

    All of this bickering back and forth took place in the area around the nurse's station, where staff and patients could overhear everything going on. It was the most humiliating thing I've ever been through, and it happened to me not once, but on 2 separate occasions. I screamed, "I HATE this place" as I stormed out of the office.

    As I passed the reception desk, crying my eyes out, a very nice woman I used to work with many years ago (when I COULD work) asked me what was the matter. She was just a receptionist, but when I explained my problem, she was flabbergasted. Told me to go to DVM and get yet another form, fill it out, and she would make sure the doctor received it, hand-delivered by herself!

    Three weeks later: SURPRISE! There was my permit, good until 2018, in the mail! And I can truthfully say, I've only used it a handful of times in the past year, when I was in agony and HAD to go to the store. If I'm merely in generalized pain (daily), I choose to walk (limp), both for the little exercise it gives me, but more importantly because there are older and/or sicker people than me who may need that space worse.

    So, I'm sure, though I can't prove it, that this nurse screws with my sleeping pill refills, often making me wait for several days before refilling it. Towards the end of the month, I live with constant anxiety that I'll run out. And they won't allow you to keep a few extra on hand to tide you over. Also now I have to take random drug tests, to make sure I'm USING my Rx, not selling it!

    Now, tell me: Who's the BAD GUY here?

    1. Wow, I'm so glad you were able to get it eventually. I know exactly what you mean about living with the anxiety of running out, it's a constant stress for me. The drug tests are another horrible thing we have to deal with, it makes me so angry.

  6. I'm so sorry you are going through this. The medical professional is a total mess. No one cares about anyone anymore, just about themselves. I have not seen a doctor in 8 years and have gone completely off any and all meds. I do it on my own bc I can't deal with the bull crap anymore. I hate having to be dependent on doctors. I'm in pain 24 hrs a day, 365 days a year, but I at least manage better now by myself than when I became sick 13 years ago. My doctor dumped me in the middle of my disability filing bc I got a second opinion when he couldn't figure out what was wrong with me. And the doctor who gave me the second opinion figured out what my diagnosis was, but retired the day he gave me the diagnosis. So I've pretty much been on my own for years. It's sad when we are suppose to live in the greatest country in the world and there is no one to make these doctors answer for the horrible things they do to people. I'm so sorry you are going through this and I will say a prayer that someone with some backbone and compassion helps you get what you need! Keep your chin up!

    1. You're right about the medical profession, no one cares anymore. I haven't found one caring medical professional in the 5 years that I have been sick. I can't believe your doctor dumped you, that is horrible! I actually went med free for the first three years I was sick, but I ended up almost bedridden because I was in so much pain I never slept. Now I have two prescriptions that I can't live without because they allow me to sleep and I'm much more functional. As long as I can get my prescriptions anyway. Thank you for your kind words!

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