photo by S. Holcombe.
I recently wrote a post that could easily have taken up 3 posts worth of writing. You know if I wrote that much in one sitting I have a lot on my mind. You also know if I’m making up words to say how I feel, I’m in a one heck of a state!
Some of the things I have written you will still see, I’m breaking it up into a couple of post, some of it you won’t….I have decided I just can’t talk about it here. Maybe some day, but not now. I want to, I think it will help some people, but it’s just something that I can’t talk about yet, at least not here. And that’s hard on me, for a number of reasons.
So…on to what I will talk about… (and it turns out this post is MUCH longer than anticipated….yep it’s one of those days. as you get to the end you will understand, but forgive any errors please, I couldn’t go through and edit this, I am in too much pain. But I wanted to get it posted. at least part of it needs a voice…..)
Saturday my father and sister came for a little visit. It was nice. Even though we only live one state away we don’t get to see each other much. They don’t get to come often, and I can’t travel very often. Unfortunately, since our trip to Tucson, 2 years ago, I haven’t been able to travel at all. I thought it was going to be better the last few months, but then I hurt my hip. Now I can’t ride in the car across town without being in severe pain. So who knows when I can go to South Carolina. Thankfully, my sister brought my dad to see me. We had a nice lunch and visit, then they were on their way. Before they came I decided to get a shot of Toradol, an anti-inflamatory to help me not be in intense pain while they were here. I wish I could have them more often, but you can’t take them on a regular basis. I was very pleased that I could visit with them without worrying too much about the pain. I was also happy I could hear them fairly well. I couldn’t hear my father at first, but after a little while I realized if I sat closer to him I could hear him better. What a relief. I felt bad that I could understand everyone else, but was having such difficulty understanding him. All in all, a good visit.
After they left I decided my hip was still feeling well enough we could go and meet the dear lady from the agency who had Kiki and make her adoption final. So off the Pet Supermarket we went. Luckily, they are very nice there and let me have a chair to sit in while we shopped a bit and adopted our newest family member. Since the vet thinks Kiki is between 1 1/2 and 2 1/2 we decided that her adoption date is her 2nd birthday! So September 27th is her birthday! She was lavished with gifts. She got a new sweater, because she has been cold on some of these early fall mornings when she goes out. It is red, and looks quite fetching on her sleek black and white body. She also got a new toy that she loves! She has abandoned all of her other toys for this toy, it is so funny! She also got a new tag, a little purple heart with her name and phone number on it….we need to get her microchip reprogrammed. She is officially ours now! I was so very happy when we were in the store and one of the people who work there told me that he had seen Kiki so often when she was there waiting to be adopted and she looks like a different dog. She is so happy and well mannered. He said it is amazing how much she has changed in just the short time we have had her. That couldn’t have made me happier. I knew then, that yes, Kiki really was meant to be our little girl.
Saturday night I was getting ready for bed. I was sitting on the side of the bed taking my night meds and suddenly I felt the Meniere’s signals. Okay, this has not been unusual lately. I’ve been very acute for the past month or more. Having mini attacks many times a day, so I wasn’t worried. I took a deep breath and calmly tried to focus. Then FLUSH..heat through my body. Ugh. OK. Calm. Focus. You got this. Whoosh. better lie down. Focus. feel the hand on the table it is steady. you are not moving. HEAT. HOT. I’M ON FIRE. Stuart walks in. “Attack?” “yep. ice.” Focus. breathe deep. calm. calm. Spinning faster. wow. deep breath. focus calm. you got this. it’s ok. spin. stop. spin. stop. breath…..Ice..Good! Still hot. chest hurts. can’t breath deep. calm. spinning fast still. calm. calm. it’s ok. it’s part of you. you can do it. “Stuart…shot please” focus calm. calm. so tired. (took meds earlier. Stuart got shot ready,(I’m lucky I have Phenergan shots available to me, it is an anti-nausea/vomiting drug) he was about to give it to me and dropped it. Couldn’t find it. suddenly spinning stopped. yes. OK. rest.
BAM. started going the other way! What the? OK…calm down. but this is weird. you can do it. focus. feel your hand. – what the heck is happening? this is not right. – it’s all OK. focus. calm calm. focus. it’s just different. – no, this is very different. now it’s jumping all around. what is going on? – calm down. calm down. calm calm. focus. it’s kind of freaking me out he can’t find that shot – focus on your focal point. it will be alright. – I need the damn shot! I’m getting scared. – shhhh. calm down. focus. focus. breathe. calm..calm. this is not real. the room is not moving. You are not moving. calm breathe. – Ah…shot. It will be better soon. – Calm…calm…shhh. AH! oh my gosh….”Stuart”. “I’m right here babe. I’m not leaving you.” “I can’t stay awake. I’m all dopey. If I fall asleep it gets worse! I’m so sick. I’m scared. It hurts. My stomach hurts.” “I’m right here, you are safe. I’ll try and keep you awake if you want”
This went on for a long while. I kept dozing off no matter what. It was horrible. I would wake up spinning even more! Then I got VERY sick. I was going to throw up. But nothing came up. I just gagged, and coughed, and mucus from my lungs came up. I couldn’t take a breath in! I had this huge gag that felt like vomit was coming up but it was like a HUGE burp came up then I couldn’t breathe. My lungs hurt. I was having an asthma attack and trying to throw up at the same time! I was so afraid I was going to have to go to the ER because I could not breathe. Stuart was holding me putting my inhaler in my mouth for me. I got enough in to breathe again. (afterward he told he kept watching to make sure I was getting in some air and not having any signs of needing oxygen….but he is also thinking we may need to see about getting oxygen for me at home.)
Finally, it calmed down enough that when I dozed I stayed asleep. And I slept! The pain from my hip did not wake me up at all that night. I was so exhausted.
The next day, was hangover hell.
I felt so bad. I was trying so hard not to feel like I handled thing badly. I really freaked out. I panicked bad. I couldn’t stay mindful. I couldn’t accept what was happening to me. I hated my body, I hated my life, I was afraid I was dying and hoping I’d just hurry up and die at the same time.
This is not what I have been working so hard on. This is not mindfulness. But it is. Mindfulness is a practice. You can’t beat yourself up if you don’t live up to your expectations all the time.
Mindfulness is not just about making it better. It is about feeling how you are, how things are now, and not being judgmental about it. It is about being gentle with yourself. On Saturday night, I could not accept my condition. I could not handle my situation without panicking. That was the way it was. I could feel every nerve in my body screaming that it wanted this to end. I couldn’t accept that this was just the was it was…I fought it. But I was there with it. I had a hard time looking back at it non-judgmentally. But now I can. I can look back and say, I had a damn hard night. I handled it the best I could. Things happened that have never happened before, and it really scared me. Who knows, I may have handled it better than I would have in the past, because of my mindfulness practice? I’m okay with how I handled it. At first I was sad about it. I felt like I failed myself. I didn’t. Mindfulness is hard. Living mindfully is not easy. But it does making living your life easier. Or at least it has mine.
So I’m off to being more accepting of how my life is, even when it’s that bad. It’s my life. It’s much easier on me when I accept that. If I try to fight it, it makes it worse. It really is better when I accept that I have my illnesses, and I have the symptoms, and all the things that they cause. I have found that I can deal with those symptoms better when I stop fighting them so hard. I feel better. I cope better. Heck, the symptoms have been easier.
I’m just saying how I feel about all of this, I’m feel I’m just testifying..haha. I’ll write a more coherent post about this sometime. With references. Or maybe I’ll find a guest writer. Who knows. For now, we’ll just see how it goes with me….hope that’s alright with all of you.
On Sunday, I decided I couldn’t stand the pain and the constant Meniere’s attacks any longer. They use steroids to break both cycles. However, too high of a dose of steroids can really mess you up with Meniere’s and make you have worse attacks. So I started on the dose that the urgent care doctor gave me and put a call in to my otologist at Duke on Monday. Unfortunately, it was phone tag for a few days, and then he wasn’t comfortable messing with this prescription. I do not think he understood the situation!! I am so beside myself right now! I mean right now, I just found out about this. I am looking at these pills trying my best to figure out the best way to ramp down off of them without it being too drastic. Going from 4 on one day to 2 on the next is not a good idea. So I take out the prescription bottle and count how many I have left. 10. Wait, I should have more than that to meet the original prescription. I count again. 10. STRESS! I filled this prescription weeks ago. Will the pharmacy really believe they shorted me?
Thankfully, yes they did. I got 6 more pills. I can do this. Breathe. Take the day as it comes, and accept it. That’s all I can do. So….I sit down and think. I will figure out how to ramp down the steroids that is between the prescription the urgent care doctor gave me and the prescription my ear doctor gave me before. I’m sure I’ll be fine. It’s not quite such a severe drop between going down. Should I be messing with my prescription? Heck I don’t know! But I feel better, with this regimen. I’m too afraid to ramp down so fast.
For those of you who have been reading for a while….remember the Walmart incident? That happened because a doctor put me on a high dose of steroids that ramped down too fast.
Now you once again have a VERY LONG POST.
and I’m too tired to read over it to fix any errors. I’m being a very bad blogger. I hope you will forgive me. I just fell again today….I’m not going to write about that now! I’ll tell all about my back/hip/leg pain after my doctor’s visit on the 6th! I’m sorry, but I’m not up to being an editor today. 🙂 My back/hip/leg thing…just isn’t going to get better if I keep falling is it? Of course, that’s why I’m falling!! I can handle it…..one moment at a time. I can handle anything for a moment, after all, isn’t that really all we know we have, this moment?
***rest in peace to my cousin Curtis Winslow. My childhood memories are full of you. 1958 – October 1, 2014