I had it all wrong

Published March 28, 2018 by amusingamore

Since February, I’ve been dealing with status migraine. It’s a bitch. I’m not going to sugar coat this one – on top of fibromyalgia, this is one of the hardest illnesses to manage, mainly because like fibromyalgia I have zero control. Zero. It’s constant and painful and it can drive a saint mad.

My second of three recent visits to the ER for my migraines in the past weeks was a horrible ordeal…they put me on a gurney in the brightly lit hallway for hours without pain relief and I quietly sobbed and hid under the thin blanket they gave me and would pray I’d just pass out not to be in pain.

Between my sobs I’d hear an old woman in a room directly across from me. She’d say something inaudible from time to time, and no one was checking on her. I’d peek out from under my sheer blanket and look into her room out of curiosity and see her alone, lights on, stirring in her bed. I wondered where her family was, what was wrong and why no one was helping us.

My dear friend Ty was with me…he was fast asleep in a chair after many hours of being patient and kind. I was lucky to have him there. This poor woman had no one. I wanted to go in there and just hug her, but at the moment I had no energy and ever part of my body hurt.

Gurneys are not soft and I’d been on one for hours. I turned back around toward the wall gingerly, put the blanket back over my head and closed my eyes. I heard her from time to time over the clattering and conversations going on in the hallway. She stayed on my mind.

A few hours later I decided to sit up and move around thinking some movement would relieve my body pain. Ty was awake and I told him about the woman across from me in the room. I mentioned getting her a stuffed animal from the gift shop or something but as those words left my mouth I realized that wasn’t going to do it for me. I got off the gurney and walked into her room.

I introduced myself and said I just wanted to say hello and see how she was doing. She said her name was Marge and she saw how lovely my husband was with me and asked if I’d like to share. (Ty isn’t my husband but he was being a wonderful friend to me.) Marge had a sense of humor! I called out to Ty to come in because I felt he needed to hear that other people see how wonderful he is. He introduced himself and Marge asked him if he’d take care of her too! It was hilarious! Shortly after that, her speech started waning and she started not making much sense and started drifting off to sleep again. I was glad I went in there. We went back to the hallway.

Ty said he was surprised I did what I did. I said I was giving what I wasn’t getting (care wise, not from Ty). He paused and said that makes total sense and it was beautiful.

A few weeks later, I was back in the same hospital for my migraine and to have some work ups done for them.

I was graced with a private room on a Friday and Saturday night and was treated very well. There were only six rooms in the neurologist wing and only three beds were filled – me in one of them. Other than being well, I wanted for nothing, but began to feel very lonely and alone.

In my 3 1/2 day stay, my children reached out briefly (one called, one visited briefly) and no Ty this time. It felt like very different emotional support. No blame, just different.

On Sunday night, it was decided to close the wing and put me and the few other patients in ‘general population’ (lol). I was moved to one room at the end of a hallway by myself for a few hours, then to another room several rooms down, with a roommate. I was concerned about the noise and quality roommate, but I’d been so lucky I didn’t dare complain.

For the first hour or so, I didn’t know who was behind the curtain, closest to the window. A female of course…she was quiet and it sounded like she was sleeping. At one point I thought I heard faintly through the curtain to come on over and say hello, but then I heard sleeping noises again and I thought whomever it was had a great dream. A few hours later, a nurse’s aide came in to her side and said, “Marge! How are you feeling?”

That’s right. The very lady I was pulled to talk to and asked Ty to meet. Marge. She was right next to me.

I hadn’t caught more than two hours sleep in a row since that Friday, but that night , I listened over in Marge’s ‘room’ through the curtain and gave what I didn’t get…again.

When the nurse came in and asked how she was doing, I let her know how light or heavy she slept and for how long. When alarms went off and Marge couldn’t or didn’t know how to let the nurse know, I did. When an aide treated her so well with a bed bath with dignity and respect, I pulled her aside and personally thanked her and told her how much that means to people like me who will be old not too long from now.

That night I was NOT alone. That night I was a daughter. I was a daughter of a power higher than myself and Marge’s daughter, even if she or I didn’t know it. I was a daughter to life and a daughter of learning.

I was not alone. I had it all wrong.


Pain Begets Pain & an Internist is the Way to Go

Published July 28, 2017 by amusingamore


It’s been a diffiSpoonie Super Powercult couple of weeks for me. I’ve had a migraine that will not go away…it comes and goes at different intensities, but it’s never gone. It makes living with Fibromyalgia even harder – as we Spoonies know, pain brings even more pain.


I decided last year to change my general physician. My reasons weren’t because of poor service, etc. It was more like…there’s a lot more going on than the ‘reason’ you’re putting down in the system on why I’m here. You’re never seeing the whole picture. That’s why I chose to find an Internist.

An Internist is not an intern. An Internist actually goes to school longer to learn how to diagnose adults. Yes…their specialty is to dig deeper and not just treat the symptoms, but find the real cause and see the big picture.

I found a very smart, patient, empathetic, brilliant Internist. (Please feel free to email me at fabulouspoet@gmail.com for the name of this doctor. Note:  This doctor is in Connecticut.) My Internist is thinking holistically and at the same time, knows too much at once will overwhelm me. She explains why she thinks a certain medication or treatment may or may not help my situation. She tells me a couple of times when she has a feeling I did’t process what she said and she writes it down for me – – Fibro Fog Fantastic! Folks…she spends TIME with me. How many of you can say that your doctor dedicates as long as it takes to treat you when you visit?

migraine-memeTurning to my latest life altering ailment, my migraine. My Internist sent me to a headache center (I didn’t know these existed until now.) The APRN that’s treating me is called a ‘Headache Specialist’ – I have to admit the first time I heard this term, I thought it was cheesy and I was ready to turn and run thinking it was some kind of clinic they sent people to when they had no idea how to get rid of a persistent migraine. I was wrong.

My first visit lasted about an hour with the APRN (this is not counting the short wait time in the dimly lit waiting room (thank goodness for dim lighting!) She asked me a lot of questions and my speech was not the best, but she was very patient. After looking though the records sent her way and having me do a few neuro-physical things like holding my arms out and pushing and pulling against her, walking toe-to-toe, etc., she mentioned a fever with my migraine is unusual, unless there’s something autoimmune to go with it. She requested I get my ANA and double-strand DNA checked again (in process).

needleShe also suggested that I get injections in my scalp – to start. Okay….now I’m thinking WTF!!!!!!! I have an exacerbated reaction to injections (I literally feel like an injection is a steak knife and sometimes bleed afterward). I was very concerned. Was this woman crazy?!?!

After gathering myself together, I explained my reaction to injections. She listened patiently then mentioned a shot of Toradol in my gluteus maximus with the warning Toradol would not provide the same level of relief as the injections in my scalp. Toradol was used as an add-on to the scalp injections as support for pain. Somehow she talked me into scalp injections.

I’m not going to lie folks – it was painful! I felt every millimeter of the needle and when she started injecting the serum, there was a searing pain that sent me straight to yelling “Owwwwww” and crying. I felt embarrassed but was more pissed off that the injection hurt even more than I was imagining. She pulled the needle out, reached for some tissue, told me it was going to be okay. I eventually stopped sobbing. I looked over at her as I was wiping my eyes and asked, “Are you done?”

400-04232429She looked at me surprised, held the needle up and said, “I barely got in a third of the medicine.”  To lighten the moment, I mumbled, “This is definitely a four letter word day.” She giggled and asked if I wanted her to continue. I had to take ten seconds before I responded with something that would upset the both of us, and I agreed to continue. I was willing to endure this torture for the end game:  relief.

Repeat the insert of the needle, me screaming and crying and her pulling the needle out two more times on the left and two times on the right. It was quite the experience for both of us.

1492__208x140_lion-cub-lewa-wildlife-conservancyAfter about a day and a half, the shots in my scalp relieved my migraines by about 40%, about 40% of the time. It was still hanging around like a lion waiting to jump on its prey. Still living in dimly lit rooms, avoiding the sun like a vampire, and miserable with my fibromyalgia pain.

Second visit about 4 days later, she mentioned the scalp shots again. We looked eye-to-eye for a moment, like two gunfighters in a duel…looneytunesdueling

The air suddenly got very thick and my throat tightened. I tried to hide the tears on their way, but before one tear dropped, she said, “maybe next visit”. Let’s do the Toradol shot. I won…I think.

So, here we are, one day after the shot and my butt is sore but I do feel some tension relief. I can still feel that lion moving around…me and that lion are going to have to have a talk…seriously!






What the ‘F’?

Published July 6, 2017 by amusingamore

I know it’s been a while folks…my bad. I will catch everyone up at a later date….for now, this video does a good job of explaining what Fibromyalgia really is, its history, etc. It’s long. I’d say start 30 minutes in. (P.S. can you believe that my spell-check is telling me Fibromyalgia isn’t a word?!?!?!?!?!!!!)

All I need is mascara and coffee…

Published September 3, 2016 by amusingamore

It’s what’s on a bag I recently purchased, one of those bags that hang in front of the registers at T J Maxx. Love it. 

Today I am living by that saying, as I did yesterday and the day before. I have hives again. No where on my body where I can hide them ~ smack on my face. When I get hives, I feel especially run down. More than the average fibromyalgia day. 

Just tapering off of steroids after adding plaquenil to my morning and evening meds. A few weeks on prednisone and I blew up … Puffy face, etc. Now I have to contemplate if I take them again for the hives. That’s what the doc prescribes for me when I have hives. For the record, I like prednisone only because I can walk better and do a little more, but I do not like the weight gain one bit. 

Decisions, decisions. 

So, mascara and coffee here I come. Let’s do this.