My blood and ANA are better than projected. There are no new blood clots and no infections so things are good. I'm pleased with today's appointment.
I went to see the Hematologist but canceled my therapy appointment bc I couldn't do two heavy assignments back to back. As a matter of fact, I had a more physically taxing appointment than expected bc I had a wheelchair malfunction and had to walk a good distance in a short period of time. I'm uncertain who put the Cancer Center (Oncology /Hematology Center) where it is but it was a terrible decision. It's far. Parking is terrible and if you have a wheelchair malfunction you're screwed! I was screwed but I still made it to see the doctor.
Because pain has been relentless, he asked if I want to go to the pain clinic. I said no. I said I'd continue doing what I'm doing on my own. No thanks to opioids. I'm not interested in addiction problems on top of all this. I fear ending up like others w Lupus, in rehab bc they got addicted. I can't risk it. For now, for me, the decision is to stick with homeopathy, all natural, non-addictive substances and teas.
The doctor calls me his miracle and smiles really big at me. I love it. He spent 3 months with me, every day checking in and doing what he could to save a case he called a 'hemaglobin nightmare.' lol 😊 At the time I told him that I'm the patient he trained for all his career and that I would need him to truly 'show up' and 'do this thing.' There was a lot of pressure but he and the rest of the team did show up for the job! I'm proud of them.
Today I'm tired and in pain yet I feel very alive. I finally got a meal down that I kept down. I had to sleep for several hours after the appointment but that's ok and nothing unusual. It exhausts me to leave the house. It happens but I'm in a pretty good place today despite the physical limitations.
After the amputation there has been significantly less CRSD pain. I will not attempt to explain it bc I don't know if it's a combination of the nerves and pain medication making a difference. I simply don't know why there's less CRSD after the amputation, but there is. I could be bc the nerves down there died. I just don't know, but I believe there is a significant difference nearly a year after the surgery.
The last few days there's been Lupus pain and pain associated with nerve damage. There's no burning pain like what happens when CRSD rears its ugly head. The Lupus pain aches deep though. It's relentless. The last three days have been pretty bad for me. I'm not just fatigued I'm weak, foggy in the brain and hurting from head to toe.
As if Lupus isn't enough, there's the anemia that I'm dealing with as well as lack of appetite for the last few days. I forced myself to eat two days ago but I've had nothing but Saltines since. I'm not hungry. I'm just tired, so tired at times that I have to sleep right then and there!
Soooo, those are my complaints for the day. Argh. It's a Lupus life!
Title: Sunflower Visions Art by: Faith Magdalene Austin Medium: Watercolor and colored pencil on watercolor paper Size: 9 x 10 inches, Finish: Signed, dated, unmounted Style: Surreal, Abstract,
Art details: Sunburst, faces, swirls, eyes and hands reaching out are just part of what you'll see in this colorful, jam packed art piece. Lively orange, vivid purple, lime and sage green glow beside sunflower yellow. This is a visual feast, a mindscape, a surreal watercolor art piece.
"Sunflower Visions" and other original art can be found in my Etsy shop at www.sundrip.etsy.com. You may also contact me for a PayPal invoice.
Title: Wild Things Art by: Faith Magdalene Austin Medium: Acrylic collage on heavy cardstock Size: 9x12 inches, Finish: Sealed, signed, dated, unmounted Style: Collage, Surreal, Abstract Figurative, raw
Art details: Cut outs of my own art have been arranged to create "Wild Things." Sunflowers, koi fish, African faces, Asian faces and more have been mixed together in a wild collage. This is a visual feast, a mindscape, surreal art piece.
"Wild Things" and other original art can be found in my Etsy shop at www.sundrip.etsy.com. You may also contact me for a PayPal invoice.
These pieces were worked on in the last two weeks. There's been a lot of art lately but hardly any of it has hit the internet. I'm falling behind on it, however, today there are a few to show.
They're all four different from one another. Creating them was quite emotional, especially the last piece when Robert spoke with Dr. D about some difficulties he was having.
The black and white mask is also by Robert. The other two are by Michelle. All are created in watercolor. The last one has crayon as well.
Today in therapy we talked about how difficult it can be to sit here with our CNA day after day and not have her know a thing about our DID. Today two of our snails died just before the CNA arrived which means we had to just swallow it down and not think about it. That's difficult for a kid who just lost her pet. It can be difficult for me, Jordan, to stay out for 6 hours, 6 days a week but so far it's happened. So far we've kept our secret.
The nurse came out today. I asked her to speak plainly. She said, "You're not going to get better." I burst into tears. It's not like I am unaware, it's just hard to hear. She added that I'll have good and bad days. I still cried. It makes me sad, this new life. I'm still mourning the old. Sometimes I'm ok with this new life but today I'm not.
In therapy we talked about the difficulty of accepting that this body sucks. We talked about what caused the falls as well as feeling pressured to walk. The pressure is mostly, mostly internal. I see people with amputations walking around or elderly people hobbling and feel shame that I'm in a chair. I "should" be up. Then I think, Faith, you can't compare yourself to anyone else! I know I have extensive nerve damage that can't be seen. Lord knows I can feel the pain, but it can't be seen. I just feel so bad about myself right now.
In session, Dr D looked at some of the art by Robert and said it's disturbing and creepy. Robert thanked him. Dr D suggested that he and Robert spend more time together in sessions bc he said he thinks Robert has a lot going on in his head that he needs to get out. The thing is, Robert remembers the sessions not long ago when cursed Dr D out for acting like an idiot about the CNAs. Robert does not trust the man right now. He's certainly not going to sit and confide in him. More time needs to pass between those terrible sessions.
CICOA is coming out Thursday for my review. Wow, what timing. My doctor is requesting that I have Saturday care too, which CICOA and the nursing company will get approved. This means I'll have 6 days a week that a CNA is here. I'll have a different Saturday aide than during the week. This means trying to find a second aide that fits here. A second aide the inside people have to hide from. Let's hope it's not too long b4 they find someone suitable. Maybe it'll only be a few weeks until I heal from the falls, then maybe I can go back to 5 days a week.
Today I'm tearful and sad. I'm also physically tired which makes a difference in my mood.
Dinner was beautiful. I had portobello and goat cheese fettuccine with fresh spinach and tomatoes. It was inspired by a frozen dinner. Tomorrow is homemade deep dish pizza. I still love to cook.
Content : Suicide discussion. Physical updates. Flashbacks of abuse. Abuse.
The nurse will be here tomorrow. I've fallen 3x in a week so things are a bit messy right now.
I've been told I pushed too hard, tried to do too much.
I'll see Dr D tomorrow as well. He is concerned about what he calls hallucinations and what I refer to as body memories. This is the second time he's asked if I'm suicidal and the second time I've told him no. The more suicides I hear about the further away from a possibility it is for me. George Foreman's daughter and 3 survivors of school shootings recently took their lives! It hurts and reminds me of my brother's suicide. How could I make the decision to kill myself, knowing what I now know? Years ago it was an option but not now. Not now.
During flashbacks I smell blood and urine. I can feel her hitting me. I can smell her parfume. My stomach cramps and I vomit.
I'm feeling a bit down right now. A little lonely, too.
I should mention, I like my new CNA a lot. She's on time, works and drinks tea with me in the morning. The funny thing is, there are a few teas that are just for me. I don't share them. I finally got tea in the mail from Uganda. It's awesome and just mine. I have Japanese Orchid tea that is exclusive as well. Most teas I'll readily share but some are saved just for me.
We talked about the dream I had where my mother beat my sister without mercy. It was brutal. She did so in a separate room from me, my cousin and 2 aunts. It was so bad and went on so long that I risked myself by knocking on the door to interrupt it. It worked and she stopped.
After the mother and sister emerged the cousin told my mother that I had made negative comments about her. I denied it. The mother took me in the room behind closed doors where she questioned me under threat. I swore I didn't say it. She believed me and let me go unharmed.
When we left the room the cousin admitted she lied. Everyone flipped out and yelled at her, why, why, why? She said that what my mother did to my sister was wrong but that my sister shouldn't have to do it alone. She said if I was beaten too then there would be an equalizing. My sister and I would be on even ground, sharing an experience. She said that it wouldn't be that one sibling witnessed the humiliation of another but that both would know and so one wouldn't be in a higher position than the other.
The dream was interesting to say the least because it touched on how it feels to watch a sibling abused and what it feels like to have your abuse witnessed. Someone saw the emotional and physical impact it had and that in itself is abuse and traumatic, to have someone see you like that. It also touched on the trauma of watching the horror show helplessly.
In the dream we were all at the mercy of the mother. The answer to making sure my sister and I were emotionally connected was for me to be beaten. Never did anyone step in and say, "You can't beat them this way" or "What you're doing is wrong and we aren't going to allow it." No, the answer was to beat me so that neither one of us was alone. One would be alone in that she watched the abuse. The other alone in that she experienced the abuse.
Dr. D and I discussed how my mother rarely went off the rails and just started beating us. She was more focused. She beat the palms of our hands, our feet with a dowel rod quite often. She beat our lips with a wide tooth comb. Rarely did she slap us in the face. When beating us with the dowel rod while laying down it was focused on our back area: legs, butt, back. There were times we got punched in the face but it was rare. My mother's rage was focused on areas of high pain, with an item she said she used because it hurt.
Robert spoke to Dr. D today. I can't say it was a good session at all. Robert is still very protective of us after the suicide issues with the CNA. Dr. D asked why we didn't report the CNA sooner than we did. He then said, "You usually protect yourselves so well." Robert reminded him that the CNA his the 'mother cord' with her suicide threats. We felt responsible! We felt guilty! We felt small and like we were in fight or flight. When it got bad it got bad quickly and we were in fight or flight. Why didn't I tell? Well dang it.....(sigh) what kind of question is that? Listen, I have mother issues and this girl played right into them. I'd even look her in the face each morning to see what kind of mood she was in to see what type of day we would have, just like my mother. If she cried then I cried with her. If she (the CNA and my mother) wanted to laugh then we laughed. I did exactly what I would have done had I been in the presence of my mother because I still have mother issues. She's the only person in the world who could make my knees shake. I told on the CNA when I could, period!!!!!!!!!!!
Dr. D and I talked about hallucinations recently. I've been smelling blood and urine even though its not there. There's been a bit of depersonalization as well.
You know what? I'm not strong enough. I'm just one person and I've been through a lot lately. I've had so little time to recharge from the hospitalization, the amputation and the new life I'm leading. There's been so little time to get firmly rooted, then for the whole suicide thing to pop up and her behavior to mimic that of my mother is just too much. So yeah, things are messed up right now. My head is messed up right now.