The symptoms are quite intense. Nightmares, anxiety and deep despair are a lessor evil than pain so I went against medical advice and didn't reduce the amount of Lyrica I'm taking.
My first thought is to type, "I know its risky, but you don't understand," however many do. Many get that its difficult to make a good decision when all the choices can harm you. If I don't take a mix of medication with severe side effects, then I run the risk of losing my mind due to pain. If I take the mix of medication with severe side effects I run the risk of hurting myself if the side effects don't taper off. That is if the problem is Lyrica. I'll get to that later.
This is a catch 22 with the medication and I made a temporary decision to continue this treatment course with daily, in person, observation by three close friends who are not medical professionals. One friend a day will be here for the next two weeks. I have therapy 2x a week for the next two weeks. I've also got regular activities and volunteer work to perform so I'm covered as far as being observed and supported.
While being supported, I may be tearful, anxious or suicidal. I know that word suicide is a scary one but let me state clearly that living at this level of physical pain is slow murder. So I'm going to take a calculated risk beside a strong support team. ...continue reading "Lyrica – Against Medical Advice"
There has been a lot of sleep today but since it was nearly 60 degrees I decided to take a walk with Clyde. We did 4.5 blocks one way and 4.5 blocks back which is only about a half block longer than usual. Perhaps we would have made it the full 5 blocks had we not been blocked by a flock of free roaming chickens. Seriously, this is Indiana but come on y'all, control your chickens! A flock. Okay, a gang of 'em, running loose. Don't let your chickens run around rough, stopping walkers trying to escape depression! There could have been happiness at the full 5 block goal but I'll never know cause of the hoodlum fowl.
After a successful escape from free roaming chickens, Clyde and I returned to the safety of our home and went straight to bed. I know I'm sleeping a lot but I can't keep my eyes open. And, I'm not trying to. I'm eating, sleeping, caring for myself, cleaning my apartment, sewing, creating and letting this depression play out. I'm just going with it. I'd be lying if I said I'm okay. I'm not okay. I'm exhausted, spent, needy and anxious.
It's been difficult physically and emotionally over this way. I'm struggling to keep sanity it feels like. I feel like I'm on the edge of it. Between my body and nightmares, I'm just exhausted.
I'm hungry. There's plenty of food to eat but nothing I really want. I just want to sleep off the yuck. What I want is pizza but I don't want to have to cook it myself. I'm being such a baby.
In therapy today, over the phone, we talked about Michelle who is 15 years old. She really enjoys walking the dog. I also found out she likes our scarves quite a bit, especially the orange ones. There are 5 orange scarves here, lol. They're added to our coat or jacket and don't make us look anything like the green lady from Brooklyn we saw online today. ...continue reading "Difficult days. Killers and mothers. A mess of topics."
I complained about Zanaflex saying I can't stay awake and that I can't tolerate this stuff, but I was violently reminded why this medication is part of my regimen. There is no justifiable reason for one's body doing this stuff, for spasming so hard that panic sets in. Again, I looked around for someplace to run, for a way to get away from myself. I have to remember to breathe, to use my coping skills for pain management so as to help myself emotionally through the spasms and burning sensations.
Yesterday it was my left side that bound hard, let go, bound up then let go. The thing is, at one point it the muscle on my left side spasmed and held. I tried not to panic. I went to the room and got in a position that helps ease muscle spasms in that area. I put my feet on the wall in a bent knee position to get a good, deep stretch. Also on the wall are trigger point pads for my feet. Since my feet are sensitive I have to put them under the hanging quilt so the points are dulled just a bit. The position helps. It took about 10 min in that position to feel a difference. By then medication time rolled around and I could take more Zanaflex....and sleep off the horror. I wasn't upset about sleeping, not this time.
CRSD is a violent, unrelenting, sadistic disease. I'm amazed at the different ways it can find to harm the human body and maim the mind. PTSD associated with medical trauma is no longer a new understanding for me.
It's a different kind of world when photos of your feet on a padded wall becomes a photo op for a blog entry. I wasn't in pain at the time of the photo.
She nixed the Gabapentin and Cyclobenzaprine which no longer work for me and exchanged them for Lyrica and Zanaflex. I'm already on Cymbalta with Abilify. This is a combination I've not had before, one I really need to give some relief. I'd take a level pain 7 with no questions asked. If they could just get me to a 7. I know there are a few moderate potential problems with this mix but being in pain makes me willing to take the risk. I'm monitored very carefully.
I said this wasn't the doctor for me but we'll see. The first two appointments with her weren't promising but it's gotten better. She was pleased to see that I've lost 23 lbs since August. She was pleased to know I got Clyde and that we're walking daily. Today has been harder than usual because my left knee is swollen, so our walks aren't as far away from the house. We walk the courtyard several times which is a good leg stretch for us both. ...continue reading "Medications. GP Impression. Decompression."
Why do women cry in the bathtub while drinking a glass of wine? Is that in our DNA?
I had a wonderful lavender bath. When I got out I put on my lavender oil and gave myself a foot massage with the oil. You couldn't tell me I wasn't sexy. I mean seriously, all that lavender, all that water, dreads drenched and hanging, yeah, there was a moment when I thought, you can't tell me I'm not sexy. Ha ha haaaa. lol. 🙂 It felt good to tell you the truth. Usually I feel like a beast but if you mix lavender oil and DIY lavender bath bombs together you get a supple woman with a case of confidence. Like wow!
I refused to cry in my beautiful bath water. I refused. I wanted to but instead I laid back, used my loofah, sipped wine and enjoyed the flicker of a pear and sage candle. I thought to myself, this is how you live....this...is....how...you....live! ...continue reading "No tears. The page has turned."
I've been reading about staying positive which can be difficult for me. One of the things I've been trying to remember is that even with my health issues, I've not lost everything. I made a short list of things I've learned to do while in bed and while pacing at home. The reason I learned these things is that it's difficult to sit. It's painful so I end up lying down or I keep moving while I'm up. Standing still doesn't go well for me but as long as I keep moving I'm okay. So, here is my photo for the 17th of this month and my list of things I can still do:
Complain. I can do that in whatever position I find myself in. I complain in English and American Sign Language. I'm currently learning French, which isn't killing me this time around.
Paint. I can paint and draw while lying down. I've covered my bed so as not to ruin my mattress. It was my greatest concern that I wouldn't be able to paint because of needing to lie down so much.
I can sew while lying down. This was a welcome surprise. I have to be a little more prepared but it is still possible. I just finished and adopted out two dolls and I've started on a custom order doll today.
I can study and take notes in bed or on the sofa as long as I have my tablet and supplies with me. I can read and pace at the same time which I do quite often.
I can produce hand written letters of encouragement to others while in bed. It's important to always reach out.
I can still receive visitors if I'm on the sofa.
I stand while making tea but I have a no spill cup that allows me to drink tea in bed. Yup, gotta have that tea no matter what.
I can enjoy the sunshine on my face from the comfort of my bed. I can see the sky and hear the birds and ducks.
My smile isn't broken because I'm lying down. I still have a sense of humor.
I got a call from a medical supply company saying I don't have the right kind of pain for my insurance to cover TENS unit pads.
I laughed. She said, "I can hear the anger in your voice." I said, "As we speak, my shoulder muscle is so tight that my pain level is rising higher than I can stand." She said, "If it were up to me I'd sell you a TENS unit on your insurance, but it's not up to me. You don't have the right kind of pain" I said, "Please read to me the dx on my chart." She read off 5 major illnesses. I said, "Tell me please, what kind of pain am I missing?" She said, "Neck pain." I must have neck pain for 3 months before my insurance will pay for the pads that make my TENS units work. I mentioned the current problem, the DJD, the herniated disks I've been dealing with for two years now. Of course I have neck pain, but that's not listed as 'a major event'. A major even? ...continue reading "Not the right kind of pain"
It takes a bit to accept things and it takes a bit to be able to do what's best for Jane. When she was seen a month ago ?? concerning her condition, I knew she was in trouble but she seemed to get better. She gained a few ounces and things appeared to be looking up, but I understand the road ahead isn't one that can be taken with confidence, not here with me.
I know Jane is 16 years old with feline renal failure. I know there are still things that can be done, but those things cost. What I decided to do, and what I talked over with friends for the last two days, is to surrender Jane to a low kill shelter. I will bring in all her paper work and tell them all that's been done for her here. I will tell them that I'm surrendering her because I know more can be done but not on my income. I don't make enough for the ongoing cost. Even if I moved to a low income apartment, I couldn't afford the care Jane needs. ...continue reading "Mary Jane in Renal Failure 2"