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Finding Up - The view from down hereThis evening I'll go to services at the Hall but at half point I'll be taken home by another Lupie. She's part of the group I work with. I would like to stay for the entire meeting but I know I'm not physically up to it.

When I go to the Kingdom Hall I sometimes sit in the auditorium with everyone else but there have been times when my pain level has risen to the point that I need to lie down, in which case I go to the library and roll out my exercise mat. This is the photo from the floor of the room.

No, you won't find me back there doing leg stretches. It's just more comfortable using the purple mat on top of the carpet.

I talk a lot about 'yoga' that I do but I should be very clear in that I don't practice yoga. I do stretches that assist in pain relief and build muscles in areas that have weakened due to chronic illness. In that spirit, I was taught several exercises tailored to my health situation. This is important because some of the exercises on line would work against me. Having guidance lets me avoid accidental harm.  ...continue reading "Finding Up. Amateur Herbalist."

1

This is a whirlwind journal entry, a roller coaster journal entry with a bit of resolution at the end of this entry. This first part starts out with me being angry enough to slip in speech just a little bit......

5:37 pm
I was ranting to a close friend about the medication I was to 'make last'. It is so offensive. It felt like him saying to me, 'I know this isn't anywhere close to enough. I know you're going to be in pain but here is a tiny, tiny bit of relief.' My pride kicked in. You can not do this to me. I am so angry. How dare you call me twice and rub salt in my wounds? So, while talking to Snow I said, "I know they didn't think I was going to be okay with it!!!!!! I said, you can't toss me scraps and think I'll be okay with it. They've got the wrong nigga for that!!!" .... oh crap........

I have spent the last 5 years doing my utmost to clean up my language. I always worried it would be the F-bomb I'd drop, not the N-word. Right now I'm pushed to the brink. How many times do you need to call me to tell me I can't come back and that you're not giving me refills? The 30 days are up. Why are you calling me?  ...continue reading "I’m not your dog"

2

It hasn't even been a year since I was diagnosed with CRSD.

CRSD extreme sweatingThis isn't normal sweating. It's not a hotflash, it's a 10 min or so flush of water in excess of what the body needs to cool itself. This episode lasted long enough that I decided to photograph it. Noteworthy is that I'm standing beside the air conditioner when this episode took place.

There's no certain time of day, no specific weather conditions I've tracked and no relation to hotflashes related to the change. Those hotflashes feel very different.

When it comes to extreme, excessive sweating and CRSD, I don't necessarily feel hot. What I feel is a sudden change, maybe a tad bit light headed and then the downpour. ...continue reading "CRSD and Extreme Sweating * Strong today. Strong tomorrow."

Content: Difficulty with doctor and medications. High risk of suicide for CRSD patients. Strong support system. Angry.

All my meds are up for renewal. The pharmacy has to call the GP to refill meds for the time that I'm still legally under his care. If they deny refills I will go to one of the emergency clinics associated with the hospital and request medication. I've spoken with my pharmacist today and explained the situation. I've been with that pharmacy for 10 years, they know me well and have been active in educating me about medication contradictions. The pharmacist was nice. She didn't laugh or ask "What did you do?" She didn't ask but the long and short of it is, "I got emotional concerning medication mistakes two times in a row. I was blunt and showed irritation."

You know what? When a doctor sends a reply back to the pharmacy that denies medication it quickly triggers me because it means I've been left in pain with nothing to help. It says walk in the middle of the street. It says, You're not going to be able to stand living in your skin. I panic. Anyone who has ever experienced CRSD pain knows that certain levels of pain make you lose your mind and you're willing to do ANYTHING to make it stop. To be denied medication feels like a death sentence for a crime I did not commit. I have no idea if he's going to refill. I'm just saying what it feels like to have my meds messed up or denied.  ...continue reading "Getting Med Refills from the Doctor that Fired Me"

Subject: Feels like I'm going fast. Betty Homemaker. General neglect expected. Abandonment expected, survival mode, old coping skills, general feeling of distress.

I kept my head down and sketched. Fitful is the best way to explain my speech patterns. I was going fast and it felt as if I couldn't really control my thoughts. I was a bit detached from myself. I kept thinking that Dr. D looks like his father more and more. My therapist's Italian shoes are awesome! He's dressing 'the part' now which is more than likely not something he has chosen. He's not the type to care about clothing. Thank goodness he has someone who does; I've seen him without female supervision and it's scary. As I spoke to him I thought of about Betty, Dr Yes and the office manager I also thought of Dr D's special needs. He used to come in looking like he slept in his car. It was bad. All academic, he's all academic. I can't imagine what his house looked like before he remarried. My goodness.

I like Dr. D very much. 🙂

Okay, so Dr. D asked if I thought I could get Dr. Yes (my general practitioner) to assist when needed. That got a strong reaction inside. We will get what we need. When explaining the strong response we also explained a deep lack of confidence in doctors.

...continue reading "Therapy Review: Conditioned Mistrust"

Wednesday was quiet and uneventful which is exactly how I like it here where the sun drips.

After a less than favorable awakening by Ms Kitty Extraordinaire, I played a few games of Swiped Gems Live and fell asleep. I got up a bit later and messed around with some Jade plants and a few other succulents. I messed around with the frogs, played with the cat then did some studying.

The Disconnect - AvailableThere were moments of high pain that I managed with heat and distraction but for the most part, Wednesday was quiet and lazy. I did run the vacuum in the entire apartment as well as dusting. It was well past 10 before I had the first meal of the day, egg rolls and tea.

I just realized now that it's almost 8 am. I'd ask where the day has gone but I know I slept most of it away, which is what I planned and needed. I could use 2 or 3 more days like this and I believe I'd feel my normal separation from sanity as opposed to total disconnect. lol

After the amount of deep sleep gotten these last few days, I honestly feel like I am somewhat refreshed. A bit of assurance concerning the medical doctor situation has something to do with it. I'll talk more about that later. For now, I'll just say today was a good day.

At some point I think I'll talk about this bedroom.

Jordan
8:22am EST January 2nd, 2017

I was somewhat angry and agitated about meeting with Dr Yes when it wasn't planned until the last minute. I feared abandonment with shaming. I also thought, I can go in there and talk to them calmly and see what can be done.

I got there. I put on my skirt and blouse, arranged my hair, got on the earrings, grabbed my shoulder bag and arrived on time. When I got there I was told it was a mistake, the automated machine called when it shouldn't have. They said, we do have your script though. I said, I really feel like I need to talk to Dr. Yes about the phone conversation. With four women in the room I said, do any of you know who I spoke to? Who was it that I spoke to extensively about the medication? All of them said it wasn't them. I said, I spoke to someone who was forceful and demeaning. One woman said, "You spoke to Robin." I said, okay. Still calm I explained that she questioned the script, told me I wasn't doing anything for myself and did I expect to take these pills for the rest of my life? I said to the woman at the desk. I'll have this illness for the rest of my life, but the point is, the way that woman spoke to me caused me to want to fire Dr. Yes because I thought that information was coming from him. She said, this isn't new, you need to speak to the office manager. I said, ok. The way I felt that day talking to her isn't the first time I hung up feeling horrible about myself.

Back in the manager's office I sent went through the entire store. The manager then said, "I've had enough of Robin, enough is enough." She explained that its not the first time and that the formal complaint will go in her personnel file.  ...continue reading "On Attitude and Using One’s Voice"

*** Disclaimer below

Escape My Skin.
7x10 art journal. Escape my skin, oil stick and ink
I often feel defeated. I run from head, I run from my skin, always in fight or flight.

Dove
Dove - pencil on paper, sketch 7x10

I will smile. I may crack a joke but behind these eyes is a woman who is so tired that she just wants to put the covers over her head and cease to exist. Please, I don't want to do this anymore, let me go. I don't want to laugh with you anymore and I don't want to rise to the occasion anymore.

You're just like her
Just Like Her - 7 x 10, art journal

February 14th is his birthday, him, that boy who dared to take his own life and tear out the hearts of others. January 28th, I'm a hypocrite. There is no plan, no action I'm going to take it's just that it's heavy on my heart and I'm tired.

*** This is not an entry saying I'm going to kill myself. I know this subject is uncomfortable and it's scary but I will not manipulate nor will I ever write an entry saying I'm going to kill myself. I want to be very clear that I'm talking about feelings, not actions or a plan. Like I did before, I will walk in the hospital if I feel I am not able to remain 'safe' with my support system. Like every other subject, I am expressing and processing in a raw, unedited way.  Journal entry titles will give a good idea of major topics discussed.

Today's agenda - Morning meds and more sleep.

Jordan

Tired Eyes. Cold Inside. Not everything has gone as planned. Things changed very quickly with accusations flying when I requested 30 pain pills to last 90 days.

Let me start from the beginning. I saw Dr. Yes Wednesday evening. He wanted me to see a pain specialist. I said okay. I called the people Friday morning to talk about an appointment. When she started talking about therapy and injections and another MRI with this and that test I stopped her. I explained that I've been through all that many times with no real results. I said what I really need is a doctor who understands that there are going to be flares I need help getting out of. I said, the steroids, though horrible, do help me but there are also times when my pain level is getting out of control and I need to take the edge off. I said, that's why I'm requesting a script of 30 Vicodin every 90 days. Talking to Dr. Yes's office Friday morning took a nasty turn from there.

...continue reading "Escape My Skin. Art. Suicide. Rage"

I went to the doc today. The new diagnosis means I'm listened to, strange feeling.

I'm going to say the same thing I've been saying and I mean it just s much as the first time I said it. I hurt. From head to toe, I hurt.

I do not want to roll over and get out my Purple Pack of supplies that'll help me make it through this. I feel too tired, but I'm going to do it. I'm going to let myself cry. I'm going to let myself melt into the mattress warmed by the best blanket on earth. What a God send, that electric blanket.

...continue reading "Falling with the temperature"

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