It is so hard to not cling to the past, especially since my life has changed so drastically in the past 5 years. I can no longer work. I have trouble getting around, even to just go to the store. I have trouble focusing. I have severe anxiety. I have trouble getting out of bed. I have days when I can barely take care of myself. I can't clean my own house. I am in pain every single moment of every single day. I am on so many meds to control my illnesses that I can barely put a thought together. I don't have hair. I communicate with most of my friends strictly online.
I compare myself to who I was 10 years ago and I just want to curl up and die. And yes, that is a completely accurate statement.
A few days ago I posted a picture on Facebook of one corner of my bedroom, which is the only space that is truly mine (actually it belongs to the cats, but they let me live there). I posted that I finally had one corner of my room "finished" the way I wanted. Yesterday I ripped it down. I pulled everything off of the shelves and started getting rid of things. These things were my past. They were no longer me. It hurt like hell to get rid of these things, but it had to happen.
The first things to go were my ritual tools and Tarot decks. Technically I am still an ordained Priestess in the Wiccan Tradition, but I no longer hold rituals for people. I no longer officiate weddings, bless babies, or send the soul on after death. I sobbed as a scoured my offering bowls and chalices with salt. Most of them were wood - I have always been an Earth Witch - and they are now in the garden, given back to the Earth. My wooden athame is also in the garden under a rose bush, planted as deeply as I could into the ground. Several crystals and other stones have also found new lives scattered among the rosemary, forget-me-nots, and lavender. The ceramic bowls have been cleansed and can now be used for ice cream or cereal.
I used my cauldron one last time to burn the sage and meadowsweet and the locks of hair I had used in ritual. The hair was doubly hard because I know I will never again have a braid that hangs to my waist. Once things had cooled, the ashes went under some plants that needed extra fertilizer and the cauldron was also scoured with salt. I plan to use it as a planter - it's days of holding burnt offerings is over. I had no means to burn the 3 Tarot decks, so they were cut to pieces. I never was truly comfortable with the traditional Tarot, but it was still hard letting go. My hand-sewn ritual robe was also cut to pieces and discarded, damp from my tears.
There is a lot missing now, from my life and from my shelves. I still have two divination decks, just not a Tarot deck. I kept many of the small stones to use in planters and candle bowls. And I am still going through things, deciding if each and every thing is vital to me as my life is now or if it is simply me clinging to the past.
I am feeling a bit adrift right now. I am still deeply spiritual, but the Wiccan path just wasn't quite fitting any more. Mainly this is because it has deep roots in northern Europe and it doesn't quite fit with the desert Southwest of the USA. For instance, it is hard to celebrate the darkness of Midwinter when it is sunny and 70 degrees outside. Native American Shamanism fits a bit better, but it really isn't me, either. As always, I will have to find my own path to follow, one that allows for some sort of meaning for my mental and physical illnesses.
I have put a couple of things back on the shelves and I have my "Fairy Lights" on. These are tiny lights on a copper strand that one of my sisters gave me a couple of years ago. They always add a sense of whimsy when I turn them on and they are helping that new unsteady ground firm up just a bit. Right now they are reflecting on my Maneki Neko and a ceramic bowl full of bits of lava rock - and that sums me up pretty well. I love the whimsy, the luck, the science, and the products of Earth at its newest.
Namaste, Good Wishes, Blessed Be.
Tuesday, June 20, 2017
Sunday, June 18, 2017
Friends Are The Best Therapy
OK, I actually think cats are the best therapy, but friends are a very close second. Nothing stops suicidal thoughts, depressive down-spirals, or anxiety fits like have a friend tell you they care and they have your back.
I managed to get myself out to a Gala event last month and it was great. But there were so many people and it was so busy, there wasn't a lot of chatting or catching up. Well, on Friday I managed to drag my sorry ass to another event. This one was informal and private - that means that Elise, the person who was holding the event, thought that I was enough of a friend that she issued the invite. That in and of itself made me feel wanted and loved. And when I posted my RSVP, a bunch of people replied that they were so glad I was going.
Well, the day arrived and I was feeling crappy. I was still trying to get the Prednisone out of my system and waiting to see if the Xolair injections were going to handle the hives. It was 103 outside, I was having major sweats, and I was nauseated. I had decided early in the afternoon that I wouldn't be able to go. I just didn't feel well enough. And then I lay down for a much-needed nap.
I woke up from my nap still feeling rather crappy, but I decided to hell with it, I was going. Even if I only stayed for 20 minutes, I was still going to show up. Well, I ended up staying for 2 hours. And I had friends coming out of the woodwork. There were so many people there whom I knew and they were all so glad to see me. I was hugged until my ribs were sore. They helped me with my plate of food and my drinks so I didn't have to juggle with my cane and they made sure I wasn't sitting by myself. I met a couple of people face-to-face whom I had only known on Facebook and we chatted and found so many things in common. Oh, it was so wonderful.
I made myself leave at 9 p.m. because I knew I had to get myself calmed down and take my meds and there were people who really wanted me to stay longer. It was so beautiful. I had to stop on the way home because I started crying I was so happy.
This will definitely be a turning point. I now know I can go out to an event and talk to people and be ME and they won't all run screaming. I CAN do this. And I want to do it again. And I am so blessed to have so many awesome people in my life who care what happens to me. We now have another huge roadblock set up in my brain for when I start feeling worthless or suicidal. Knowing that many people care helps me keep fighting.
I managed to get myself out to a Gala event last month and it was great. But there were so many people and it was so busy, there wasn't a lot of chatting or catching up. Well, on Friday I managed to drag my sorry ass to another event. This one was informal and private - that means that Elise, the person who was holding the event, thought that I was enough of a friend that she issued the invite. That in and of itself made me feel wanted and loved. And when I posted my RSVP, a bunch of people replied that they were so glad I was going.
Well, the day arrived and I was feeling crappy. I was still trying to get the Prednisone out of my system and waiting to see if the Xolair injections were going to handle the hives. It was 103 outside, I was having major sweats, and I was nauseated. I had decided early in the afternoon that I wouldn't be able to go. I just didn't feel well enough. And then I lay down for a much-needed nap.
I woke up from my nap still feeling rather crappy, but I decided to hell with it, I was going. Even if I only stayed for 20 minutes, I was still going to show up. Well, I ended up staying for 2 hours. And I had friends coming out of the woodwork. There were so many people there whom I knew and they were all so glad to see me. I was hugged until my ribs were sore. They helped me with my plate of food and my drinks so I didn't have to juggle with my cane and they made sure I wasn't sitting by myself. I met a couple of people face-to-face whom I had only known on Facebook and we chatted and found so many things in common. Oh, it was so wonderful.
I made myself leave at 9 p.m. because I knew I had to get myself calmed down and take my meds and there were people who really wanted me to stay longer. It was so beautiful. I had to stop on the way home because I started crying I was so happy.
This will definitely be a turning point. I now know I can go out to an event and talk to people and be ME and they won't all run screaming. I CAN do this. And I want to do it again. And I am so blessed to have so many awesome people in my life who care what happens to me. We now have another huge roadblock set up in my brain for when I start feeling worthless or suicidal. Knowing that many people care helps me keep fighting.
Wednesday, June 7, 2017
Finding The Patterns
If you have been following me or have known me for a while, you will know that one of my "things" is that I have to be in control. I learned through years of therapy that this is my response to the combination of my mind being so chaotic and my schizophrenia trying to find a patter to all of it. I keep thinking that if I could just get enough data, I can make it all fall into place and work like it's supposed to.
Of course, that never happens. I have literally sat on the floor sobbing that there isn't enough data, I don't have enough data points to make the pattern readable. And that is just the mental side of things. Then there are my autoimmune diseases and other physical ailments that complicate it and make it necessary to get even MORE data to make it all fall into place.
To some extent I have succeeded. By reading research papers and journals and talking to various doctors, I have learned that a lot of my ailments are connected. My mental illness and my chronic nerve and muscle pain (often called fibromyalgia) are connected because they are all disruptions in the proper function of my central nervous system. And they are now finding autoimmune connections to this type of dysfunction. I KNEW there was a link. What I could see of the pattern hinted at it. Now I just wish someone could find a way to fix it. That research, unfortunately, is decades away from having a practical application.
Today I found another connection. I had my follow-up appointment with the immunologist and all I had to report was that increasing the dosage on the Loratadine had done nothing to improve the chronic hives. I am still completely miserable and am having trouble sleeping because of the itching and pain. I have also been completely nauseated and have had trouble keeping my meds down after taking them in the evening. I happened to mention it, and the doctor confirmed what I suspected: When I have that type of autoimmune inflammation on my skin, it is also happening throughout the GI tract. So, when the hives flare up, I get nauseated and have GI trouble and YES they are connected.
With that in mind, he decided to forgo what was going to be step 2 to controlling the hives and we are going to step 3. If we can get Medicare's approval (and he said it usually isn't a problem) we are going with Xolair, a monthly injection designed specifically to control hives or asthma that don't respond to typical medication. I don't know how long it will take to get the approval, but I hope it is soon. I am going nucking futs with the hives and nausea.
In the meantime, I am feeling completely out of control. Yes, we have some answers and a plan, but I am still trying to find a pattern. Maybe the hives would go away if I stopped eating this or that. Did they get worse when I went to bed later than usual? Could it be the heat? Is that causing the flare-up? There has to be something I'm missing, something that I can control that will fix this. This isn't the case, of course. I am already on a very restricted diet (and wouldn't that be wonderful if this new medication fixed some of my GI issues and I could relax the regimen a bit?) and I know logically that what I am eating is not causing this. But that doesn't stop me from going over it again and again in my head to find some connection to eating peaches and feeling more tired.
Sometimes this need to find patterns is a good thing. But usually it is just a one-way trip to Anxiety Land.
Of course, that never happens. I have literally sat on the floor sobbing that there isn't enough data, I don't have enough data points to make the pattern readable. And that is just the mental side of things. Then there are my autoimmune diseases and other physical ailments that complicate it and make it necessary to get even MORE data to make it all fall into place.
To some extent I have succeeded. By reading research papers and journals and talking to various doctors, I have learned that a lot of my ailments are connected. My mental illness and my chronic nerve and muscle pain (often called fibromyalgia) are connected because they are all disruptions in the proper function of my central nervous system. And they are now finding autoimmune connections to this type of dysfunction. I KNEW there was a link. What I could see of the pattern hinted at it. Now I just wish someone could find a way to fix it. That research, unfortunately, is decades away from having a practical application.
Today I found another connection. I had my follow-up appointment with the immunologist and all I had to report was that increasing the dosage on the Loratadine had done nothing to improve the chronic hives. I am still completely miserable and am having trouble sleeping because of the itching and pain. I have also been completely nauseated and have had trouble keeping my meds down after taking them in the evening. I happened to mention it, and the doctor confirmed what I suspected: When I have that type of autoimmune inflammation on my skin, it is also happening throughout the GI tract. So, when the hives flare up, I get nauseated and have GI trouble and YES they are connected.
With that in mind, he decided to forgo what was going to be step 2 to controlling the hives and we are going to step 3. If we can get Medicare's approval (and he said it usually isn't a problem) we are going with Xolair, a monthly injection designed specifically to control hives or asthma that don't respond to typical medication. I don't know how long it will take to get the approval, but I hope it is soon. I am going nucking futs with the hives and nausea.
In the meantime, I am feeling completely out of control. Yes, we have some answers and a plan, but I am still trying to find a pattern. Maybe the hives would go away if I stopped eating this or that. Did they get worse when I went to bed later than usual? Could it be the heat? Is that causing the flare-up? There has to be something I'm missing, something that I can control that will fix this. This isn't the case, of course. I am already on a very restricted diet (and wouldn't that be wonderful if this new medication fixed some of my GI issues and I could relax the regimen a bit?) and I know logically that what I am eating is not causing this. But that doesn't stop me from going over it again and again in my head to find some connection to eating peaches and feeling more tired.
Sometimes this need to find patterns is a good thing. But usually it is just a one-way trip to Anxiety Land.
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