Yesterday was a tough day. While life as a whole is good, some days are just rough, you know? It was one of those.
First of all, I was not able to sleep the night before. I don't know why. Sometimes my fibro likes to kick things up a notch and throw some unexpected surprises at me, and this was one of those little gifts. I did manage to get a few hours of dozing in, all put together. Maybe two or possibly three? (When you consider that I was in bed for, like, 9 hours though...) It was nice to snuggle with C, though. He was sleeping rather restlessly, continually pulling me into his embrace while he slept. I liked it, except for the hot flashes I have been going through which cause me to sweat profusely, and the fact that C is a furnace, especially when he sleeps. I was roasting, but content.
I finally pried myself out of bed and got ready for my appointment with the pain management specialist. I didn't realize until later how much hope I had laid up for this appointment, but I was really anticipating something special. I arrived 15 minutes early, because I knew I'd have forms to fill out as a new patient. I filled out the forms, and waited... and waited... for 2 hours. Not impressed. However, I have to give them some grace, as one of their doctors was in the hospital seriously ill, so they were scrambling to cover their bases. Fortunately, they had comfortable couches.
I finally got into the room where the doctor would see me, and waited some more. He came in just after I finished stretching, since I had time to kill. About 5 or 6 minutes after he came in, he was gone and we were through. I was holding back tears, but they began to fall while I sat on the comfortable couch again, waiting for my prescription. A young man sitting near me saw me crying and asked, "Are you okay, m'am?" I nodded and smiled at him through my tears, though they continued to fall. He looked at me again and said, "You're too beautiful to be crying." I smiled again, and then he asked me, "Is it the pain?" I nodded and said, "Yeah, but... they said there's nothing they can do to help me." He looked crushed and sympathetic and expressed his condolences. We struck up a conversation, which helped me to get my mind off of my bitter disappointment and hopelessness, but when he was called back to the patient's room and I was called up to the desk for my prescription, the tears built up again, and I cried all the way to work.
I had hopes that a doctor who specializes in helping people to manage their pain could help me somehow, but he said that since it's fibromyalgia, there's nothing he can do. He instructed me to get 30 minutes of aerobic exercise a day, so that my natural endorphins could do the pain-fighting work for me. I mentioned that movement and exertion made my pain worse and made me sick, but he didn't pursue the lead. I was too crushed to really stand up for myself, but I did point out that, in lieu of standard aerobic exercise, I have sex a lot. The look on his face as he struggled to recover his composure was quite humorous to me. He didn't know how to respond to that at all.
When I was telling C about my encounter, he struck up a hypothetical conversation with the doctor in which he pointed out (in a rather upset tone) that he/I "can't do 30 minutes of aerobic exercise a day. I can't run. I can't even jog. I have to use a walking aide just to get around. Doing housework exhausts me and makes me sick sometimes. I would lay down, but even that hurts!" It was sweet to see him take up on my behalf. I almost wish that he were there with me so he could have stood up to that doctor. As it was, I was dazed and dizzy from lack of sleep, then crushed with the hopelessness of the statement that there was nothing they could do for me.
I told him my problems. I said, "I'm here because you guys know how to deal with pain. I'm in a lot of pain, and it's ruining my life. I'm pretty much bedridden all of the time. Help me."
"I can't help you."
I felt my world caving in. It was like I was looking down a dark tunnel at the rest of my life, and all I could see was crippling, gnawing pain. It felt like a death sentence, like my pain was only going to keep getting worse and worse and there's nothing anyone can do about it. That's why I cried. Because I don't want to live this way, but this man was pronouncing this unliftable curse upon me, throwing useless advice in my face and walking away. This man that was supposed to help me... refused. Said he couldn't.
At least he gave me pain killers.
As I cried in my car, though, I caught sight of the ring that I bought recently, my Warrior/Survivor ring.
First of all, I was not able to sleep the night before. I don't know why. Sometimes my fibro likes to kick things up a notch and throw some unexpected surprises at me, and this was one of those little gifts. I did manage to get a few hours of dozing in, all put together. Maybe two or possibly three? (When you consider that I was in bed for, like, 9 hours though...) It was nice to snuggle with C, though. He was sleeping rather restlessly, continually pulling me into his embrace while he slept. I liked it, except for the hot flashes I have been going through which cause me to sweat profusely, and the fact that C is a furnace, especially when he sleeps. I was roasting, but content.
I finally pried myself out of bed and got ready for my appointment with the pain management specialist. I didn't realize until later how much hope I had laid up for this appointment, but I was really anticipating something special. I arrived 15 minutes early, because I knew I'd have forms to fill out as a new patient. I filled out the forms, and waited... and waited... for 2 hours. Not impressed. However, I have to give them some grace, as one of their doctors was in the hospital seriously ill, so they were scrambling to cover their bases. Fortunately, they had comfortable couches.
I finally got into the room where the doctor would see me, and waited some more. He came in just after I finished stretching, since I had time to kill. About 5 or 6 minutes after he came in, he was gone and we were through. I was holding back tears, but they began to fall while I sat on the comfortable couch again, waiting for my prescription. A young man sitting near me saw me crying and asked, "Are you okay, m'am?" I nodded and smiled at him through my tears, though they continued to fall. He looked at me again and said, "You're too beautiful to be crying." I smiled again, and then he asked me, "Is it the pain?" I nodded and said, "Yeah, but... they said there's nothing they can do to help me." He looked crushed and sympathetic and expressed his condolences. We struck up a conversation, which helped me to get my mind off of my bitter disappointment and hopelessness, but when he was called back to the patient's room and I was called up to the desk for my prescription, the tears built up again, and I cried all the way to work.
I had hopes that a doctor who specializes in helping people to manage their pain could help me somehow, but he said that since it's fibromyalgia, there's nothing he can do. He instructed me to get 30 minutes of aerobic exercise a day, so that my natural endorphins could do the pain-fighting work for me. I mentioned that movement and exertion made my pain worse and made me sick, but he didn't pursue the lead. I was too crushed to really stand up for myself, but I did point out that, in lieu of standard aerobic exercise, I have sex a lot. The look on his face as he struggled to recover his composure was quite humorous to me. He didn't know how to respond to that at all.
When I was telling C about my encounter, he struck up a hypothetical conversation with the doctor in which he pointed out (in a rather upset tone) that he/I "can't do 30 minutes of aerobic exercise a day. I can't run. I can't even jog. I have to use a walking aide just to get around. Doing housework exhausts me and makes me sick sometimes. I would lay down, but even that hurts!" It was sweet to see him take up on my behalf. I almost wish that he were there with me so he could have stood up to that doctor. As it was, I was dazed and dizzy from lack of sleep, then crushed with the hopelessness of the statement that there was nothing they could do for me.
I told him my problems. I said, "I'm here because you guys know how to deal with pain. I'm in a lot of pain, and it's ruining my life. I'm pretty much bedridden all of the time. Help me."
"I can't help you."
I felt my world caving in. It was like I was looking down a dark tunnel at the rest of my life, and all I could see was crippling, gnawing pain. It felt like a death sentence, like my pain was only going to keep getting worse and worse and there's nothing anyone can do about it. That's why I cried. Because I don't want to live this way, but this man was pronouncing this unliftable curse upon me, throwing useless advice in my face and walking away. This man that was supposed to help me... refused. Said he couldn't.
At least he gave me pain killers.
As I cried in my car, though, I caught sight of the ring that I bought recently, my Warrior/Survivor ring.
On one side, it says "Warrior" in purple, and on the other it says "Survivor" in black.
I looked at the word "Warrior" that was facing me, and I felt my resolve harden. Warriors are named as such because they go through difficulties. There is no such thing as a warrior that has not gone through at least one battle. I am not a Warrior because my life is easy; I am a Warrior because I face and overcome difficulties. This is another battle for me to fight. I will do this. Not so much that "I can do this", but I will do this. I will continue to live my life, even if jerkface doctor man won't help me.
When I got to work, I shared my experience with E, and she held me while I keened my grief and disappointment. I love how she is totally empathetic, because she has RA and deals with large amounts of (literally) crippling pain on a daily basis. We fight the same fight. And we ran into the same jerkface doctor on our journey. He made her cry, too, when she saw him. He said something about the pain being her fault because she's obese and she needs to get up and lose some weight. I would say that something is lacking in this guy's bedside manner.
She encouraged me, though, and shored up the resolve that had already begun to grow in me on my drive there.
I am fighting... one day at a time. One situation at a time.
The rest of the day was... nice. I guess. I made it home and collapsed into bed for a couple hours worth of dozing. When C got home, we went for a long walk and talked about stuff. E had wanted to send us to Julian, my magical mountain retreat, during the time C had gotten off for J's wedding, and I was SO excited and looking forward to it! (Note to self: stop looking forward to things.) Well, we can't manage the gas money for that, either, even though it's only 2.5 hours there. Alas... So I came up with an ingenious idea, which is to go camping here locally for a day or two. We can go out to our special camping place where he proposed the first time (and where some other incidents of great importance happened) and have some time together in the wilderness. (Sorta.) And, fortuitously enough, there is supposed to be a fantastic meteor shower on the days that I had thought we might go out camping! So I'm not going to say that I'm looking forward to it, but it would be a nice thing to have happen.
When we got back from our walk, C prepared and assembled the ingredients for a yummy crockpot stew, which has been simmering all day today and filling our house with delicious smells. It's making me huuuuuungry! Today, I got my MRI and EEG scheduled for about 2 weeks from now, just a few days after my electrical nerve testing. M was willing to come sit with me when I asked him, but a phone call to the hospital confirmed my suspicions that he wouldn't be allowed to come into the MRI room with me, and since it could take an hour or more (unsure on the timing--some sources say 15 to 90 minutes, some say 1 to 2 hours) I would hate to have him just hanging around, waiting for me. That seems rude, especially since he'd have to get the day off of work to take me. I really wish C would/could go with me, but it's not going to happen. I have to be there by 6:30 a.m. for the EEG, and they want me sleep deprived for some reason. The MRI isn't scheduled until 9, and I have no idea when I'll be getting out. C will be needing that time to sleep, because he works that day, so I didn't expect him to be coming with me. In fact, he laughed when I mentioned the possibility, and told me "Yeah, right!" Just as I expected. lol.
I'm going to have to plan a few things in advance, such as making sure that I have food with me, and pain killers (if I'm allowed to take them-- laying still on hospital beds for that long will take its toll on me, not to mention the sleep deprivation!). I'll also need warm socks and a light sweater or blanket. Hospitals are always freezing. I don't think I'll need to be in a hospital gown, though, since everything has to do with my head and I won't be wearing any metal. I'm not even allowed to wear makeup! (Which is fine... I don't wear it anyway at all, hardly.) I suppose that's because some products have trace amounts of metal in them, which would disturb the magnets in the MRI.
I'm looking forward to potentially getting some answers, though my expectation is that the tests will all come back "normal" and no one will have any idea what's wrong with me. I suppose that's better than MS. I had to explain what that was to C last night, and he looked pretty grim about the possibility. Yeah... we're just gonna assume that I don't have it. That's the best route.
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