I am emotional in most GP visits because the doctor has to touch me and it hurts. Also, sitting in the doctor's office feels like my denial blinds have been lifted. At least outside the office I have a measure of time where I'm not thinking of my body and what has been lost, but being in that office is different. I know why I'm there. I know that faking a smile isn't going to work. I feel vulnerable and I cry. I chatter on when I'm nervous but I can tell you what hurts, where and how it feels different from the normal pain.
I've been told recently that expressing clear needs to medical doctors can be problematic. I used the word recently because this isn't news to me. I've heard it a thousand times. I've also hear it said, 'You're more involved in your health care than we're used to seeing."
What's interesting is that I no longer have faith in you. How do I put faith in a community that has no faith in itself? Doctor's constantly put down their peers down. I've had GP's tell me to stay away from pain specialists. I've had orthopedic specialist talk bad about other orthopedic specialists and rheumatologists. Nurses in office will talk bad about the doctors and tell you what medical practices they think are quackery. If you can't even agree among yourselves how to treat the basic needs of a patient then how do you expect me to put my trust in you? You don't even respect each other.
I arrived at the dentist office and had two teeth ripped out of my face. Right now I have a headache behind my right eye and in my jaw, the same headache that brings me to tears and that isn't touched by 10-325 Vicodin.
I've put cold packs on and have laid in the dark. Mary Jane wants nothing to do with me a I turn this way then readjust that way. As a matter of fact, she's asleep in front of the mirror. Talk about vanity. She's sleeping next to an image of her furry self. I'd like to sleep.
Out of frustration for the pain I decided I needed to get out of the house. This is the type of pain I want to run from. It's gnawing, aching, pulsating. It dies down then increases to fill the entire right side of my face and on to the shoulder. I was put on much stronger antibiotics. The extractions hurt so badly!!! The dental situation wasn't done by my regular surgeon because this was an emergency appointment.
I'm out of it but only because I've had no sleep.
Oh, hey, I painted yesterday. I painted in watercolor. I did flowers of course.
I've fallen asleep standing up or sitting here in front of the computer.
The sleepiness feels more like exhaustion that finally takes over. There's a suction away from wake. I'm not sure if I'm explaining myself well. I'm tired, trying to keep my eyes open but there's this very uncomfortable feeling that sucks me away until I lean and jerk myself away trying to sit back up.
When I fell asleep sitting up I heard snapping sounds, like the sound of a snapping twig. I can hear the people in my head chattering. One female voice gets louder but it disappears as I snap awake. I have no idea what she's or they are saying. ...continue reading
Content: Emotionally worn out. Feeling subhuman. The need to be held. PTSD and homelessness,
I feel the need for a lot of validation and reassurance. Am I okay? Am I going to be okay? Is it stupid to feel xyz?
I was sketching last night and had a thought that I wished my mother could see some of my art. The thing is, she'd hate it and I know that. One part of me says its to tell her, "Look, I can do this." Another part is that I need her to dislike it. She would tell me the quality is good but the subject matter is depressing as always. In my head I'd remind her that she fuels most of the depressing subjects, thank you very much. That leads me to letters I wrote to her as a kid. I wonder if she still has them. I wrote only in German when writing to her, never, ever English or Spanish. She would tell me how negative the letters were. I'd tell her they aren't negative, they're pleadings from your daughter who wants you to understand that she's struggling. She never heard it that way. She just said I focus only on the negative.
I am who I am.
Dr. D and I discussed my need to feel human. There are times when pain makes me feel like an alien, a freak. When I can't be touched I begin to lose the sense of being real, of being human. I'm just existing in mind bending pain and not even the cat can touch me. It's been a very, very long time and I need someone to lay on me and let me hang on. I need to feel the pressure of another human being on me. I need to feel that connection, feel them breathe.....just hang on like it means my life.
In session Dr. D and I discussed the lack of security I feel in my apartment. I'm going to be here at least another year but I wonder if I'll feel comfortable again, settled and able to continue a pattern of growth? We talked about how triggering it has been to think I may have to store my stuff in one of those cold, cement, prison dungeons cells they call paid storage. There have been quite a few triggers associated with the manager's antics. ...continue reading
Saturday went well. The meal was nice but I skipped the wine and kept with tea. The movie was good and had no surprises or triggers since I knew what to expect. Tonight was baked tilapia, veggie wonton and steamed broccoli. It was good. Monday evening is tandoori chicken. It's chicken and spices in a baking dish inside my little oven. I love my convection oven. To finally get some good food in me is a positive step.
The landlord came the other day to inspect the apartment but she did not bring a lease. As a matter of fact she looked at me and said she'll get it together when she's good and ready. I don't trust that she's going to provide a lease. I have a feeling she'll present me with a court date. If she does I'll show up to that court date to contest the eviction.
I've heard nothing at all from the owner, not a thing.
My anxiety over the situation has dropped significantly. I can't worry about what might happen. I need to prepare, use my resources and force recognition of my rights, but I need not swim in what might happen. I do not have the energy to do so. ...continue reading
Content: Physical pain. Physical torture as a child. Mother and uncle standing in the doorway. Being watched as I shower. Reassuring myself that I'm safe. Robert's session.
When my pain level gets really high I get confused about why I'm in pain. When my eye lids hurt, when it hurts to talk, when I struggle to breathe I forget it Lupus or CRSD. I forget I have a medical condition and feel trapped in the past. Yesterday I lay in bed, just on the sheet, the fan was blowing over me. I had my face buried in the pillow when I became flushed with dread. I expected to look at the door and see my mother standing there. I fully expected her face to become clearer, for her to fill the doorway. I pulled the covers over me and felt more protected. I had to tell myself she can't ever again stand in my doorway. I slept with uneasiness and woke feeling bogged down.
Dr. D asked the question: Can your mother come to your house and get in?
Dr. D: Can she get in and stand in your doorway?
Dr. D. Can she ever hurt you again?
It's what she left me with that haunts me. I feel her hand from the grave touch my skin and make it crawl. I see her in my head but I try to talk to myself and remind myself that I truly am safe. As far as living family members, as long as I have a cat, no one is coming here.
This spring I was to decide if I could manage a dog which would help me sleep better but I am not able, sadly, I am not able. ...continue reading
I'm battling my mind and body.
I've had sporadic periods where pain has knocked me off my feet. Funny thing is, at the time I remember thinking to myself, I understand suicide. That thought would be strange if it wasn't for my brother's death being fresh on my mind. The lack of information concerning my sister weights heavily. It is also true that there are times I think I can't take another second of pain and that I'd rather be dead. Dr. D has noticed some PTSD issues associated with my chronic illness. I feel validated by that. This is traumatic. It's like my private civil war where I die every single time. There are times, like yesterday when I thought to myself, I understand suicide. ...continue reading
It's cold. I'm aching. This Lupus moment has been brought to you by Samsung Smartphone's, where overheating batteries double as cordless heating pads.
After reading in bed, I realized my phone was warm. I cupped it then held it to my face relishing the warmth, then I remembered that my smartphone is a Samsung and this bad boy will explode. Time to turn on the real heating pad, the one dressed in cotton cloth with yellow roses. The fabric may have yellow roses on it but it still smells of lavender. The rest of the room hints sandalwood and sage. I get my sandalwood incense from Ebay once a year for little of nothing. ...continue reading
5:08 pm EST
I'm lost in this, trying to get out of my skin. This hurts so bad and I'm scared. I hate this!!
I've been hitting 9's since Sunday. It's not immediate, it's a gradual rise as I move around, as the air hits me or I move my head and my hair moves across my back. My eyes close and it hurts, my fingers move across the keyboard and it hurts. I hurt, everywhere.
The last few days I've tried to distract myself online and around the house. I've even tried to ignore the pain but today is a day where I say enough, it's pain med time. I'm going to try to make myself comfortable and see if I can get some sleep. I'd rather not stay awake during this, not if I don't have to. But I don't want to go to sleep. I want my muscles to stop spasming so hard in my shoulders. I want to get things done, and I'm hungry.
It's a devilish night to feel the pain of being whipped forward and back. I knew I'd feel this later. We're having thunderstorms. Monday around 12:30 pm my cab was rear ended by a small sedan. The same day I took a short walk and in my therapists office when my pain rose high, I did some stretches to try to ease it a bit.
It's time for my Purple Pack and more sleep. Mary Jane has stolen my spot on the bed and is taking advantage of the heated blanket.