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There are two people in my medical team who feel I'd do better with a small dog as a service animal. For several months this has been on my mind. Weighing my options, assessing my needs and considering my financial situation, I've decided against getting a dog.

I'm a dog person. I love their noses and their wagging tails. I love their fierce loyalty and the look they give you with those big browns. They celebrate every time you come home. They're constantly happy and are all around good company. I'm first and foremost a dog person, but honestly, I'm not in the situation to get one.

What's the next best thing? A Maine Coon. In the state of Indiana, a service animal can be a cat or a dog. I've heard of doctors writing letters to a landlord expressing the therapeutic value of birds. My next cat will hold the same legally protected status as a service animal. No pet fees, no extra charge on rent.

I think a lot about the qualities of my Maine Coon mix and see the best of both worlds. Last night's hell solidified the decision not to get a dog but to get an MC that sleeps above my head and purrs in my ear as I try to survive the night. At one point she moved to my side and snuggled close. It did hurt, but so did everything else. It was soothing and helped me cope better with the knowledge I wasn't alone.

I am terrified of the pain my body goes through. It'll spasm hard for maybe 30 seconds then gradually let go. It sometimes partially spasms as it lets go then it'll totally release only to restart 5 or 6 minutes later. The muscles quiver and spam. I try to remember to breathe with my diaphragm. I was instructed to inhale and fill my stomach, hold just a few seconds then slowly exhale. I've been fortunate in having so much physical therapy bc I've taken bits and pieces to add to what is now a wealth of coping skills for physical pain. Despite being terrified, I have a sense of control by knowing and using coping skills specific to my needs.  ...continue reading "Dogs, cats, frogs. Working with what I’ve got."

I went to bed around 7am Tuesday morning and woke at 12 noon to meet with Betty. I took a quick lavender shower and was out the door. She was tired, I was tired but we got our stuff done and came home.

Within min of walking in the door my body started this horrible spasming. Every muscle, groin area included, tightened, let go, tightened and let go. I'd compare it to the strong contractions of child-birth only for hours upon hours and the contraction going from the shoulders to the toes. My toes spasmed a locked. I'd maneuver them straight but a few minutes later they'd do it again.

I realized I was in trouble bc it wasn't stopping. Charlie horse - like spasms in my thighs, squeezing in my calves, my fingers curled and locked and the muscles in my lower back rippled with spasms - simultaneously. I was writhing and needed a human voice so I called an elder from the Kingdom Hall who was very nice. I talked to him and his wife for less than 10 min bc I was so tired.

People don't always say the right thing. He told me that he knows my Lupus will get a lot worse. He said, its attacking your body. I said yes. We talked about how my current understanding is that the RSD is linked to my Lupus. Strangely enough, answering questions and talking for about 10 min helped. Despite the 'it's going to get worse' statement to which my mind replied, I won't live, it was a helpful phone call. I slept shortly after the phone call.

Around 11:30pm a call came in from Seattle from a girl I've known since 2000. She's come to visit me twice :-). I was drunk with exhaustion so I only managed a few minutes of chat. I love that girl.

The day was difficult but with the help of friends I got through it in one piece. I realized early on that I needed to hear a human voice to help me through this. Right now I'm spent and have a headache but I feel confident I can keep going.

My best furry friend, Mary Jane, snuggled close to my ear and purred.

I'm going to go back to sleep.

Faith

01/04/17 - 4:10amEST

Taste. My taste changes quite often. Right now I can't stand the taste of ice cream, at all. Before that it was peppermint. I suddenly couldn't stand the taste. It took about a month before I could eat it again. It's going on 2 months since my taste for ice cream has changed. It's crazy.

I wonder, too, is my current depression caused by RSD or is the depression bc of constant symptoms from RSD? I don't know, but I feel so low and like I just don't care anymore. I'm not suicidal. I don't mean that, but it's like I just don't feel connected to tasks. There's no flame, no drive. I'm just going through the motions.

...continue reading "Taste. Depression. Anger. Intensity."

I don't celebrate New Year's Eve or day, but many do and want to write about positive beginnings, letting go and making peace. That's fine. I take no issue with entries about goals and adjusting to change; but you mustn't expect that here.

2016 was horrific. I've not seen so much destruction of land, property and life shoved into one year and plastered on every media source possible. From across the globe to my front door there's been tragedy after tragedy. If earthquakes, mud slides, massive fires and flooding wasn't enough, there was a brutal election to sit through. As if bombs going off, children washing ashore and gigantic sink holes weren't disturbing enough, there was a mind bending act of terrorism in putting Donald Trump in office. What is wrong with you? Trump is an arrogant pig with a Twitter account, and zero tolerance for anyone but himself. He is an animal. He's the Adolf Hitler of the United States.

...continue reading "@TheReal 2016"

Jolie B Studios
Used with permission by Jolie Buchanan

I  and another person supporting the family with a recent tragedy have found ourselves overwhelmed with physical symptoms.  We are the only 2 with Lupus, the other 2 are relatively healthy. Just like them, we kept going and going. I could feel my body's need to stop but I didn't entirely listen.

Right now my vision is so poor that the screen is a blur of white and black. That happens when my stress level is up as well as my pain level. My left side spasms then lets go, violently. I can't say support was the problem bc I always do too much. Why?

I'm often on autopilot, driven but not connected, walking just 5 inches off the ground. I 'Energizer Bunny' things then look back and think, I should have spread that out. It's my norm to keep going as if there's a penalty of death if I stop short of perfection. No less than a year ago my body said that business as usual has to stop. How?

...continue reading "still floating"

Subject matter: death of a little boy.

The left shoulder going all the way to the toe on my left side spasmed for hours. The pain was so intense I honestly thought I wasn't going to make it through. Four friends assisted me through it. It's a strange feeling to think to yourself, I'm drying, but the pain was so intense I thought I wasn't going to make it.......then I did. I slept for a while then got up Sunday afternoon to paint away some anxiety.

I was punching the brush on the canvas. I realized just how hard I was hitting the canvas, then I just stopped and cried. I was crying out of sheer exhaustion.

I pushed the small canvas away and pulled out a clean one and began painting. I was thinking about this 11 year old boy whose body shut down. I was painting a sympathy card for his mother and father. I kept thinking, why him and not me? I thought, he was just 11 years old. His family loved him. He had family who wanted him and yet I am the one who survived the night. I thought to myself, what good am I to anyone? Then it hit me, I'm painting a sympathy card for a family who lost their son. I'm part of the group that's encouraging and supporting the family. I have a life time goal to be of encouragement to those who need it. I'm increasing my education to be able to offer hope, that's what I'm doing.... and it's what I want to do. I can encourage in English, French and American Sign Language. That's what I'm doing now that I've survived the night.  ...continue reading "A young child with Lupus died. Processing."

I'm restless...anxious. Sometimes when I get this way it feels like I need to put something inside me to calm down. I feel like I need to scribble on paper while pacing the floors with the a movie playing and the radio on at the same time. I need to rip my stomach out. I need to go to my bed and pull the covers over me but that's not going to work because I'll just lie there and my head will keep going and going. I can feel my hair on my neck, it feels like it weights a ton. I promised not to cut it. I'm restless. I think if I change something big then it'll fix whatever it is that's wrong with me, even though I don't really know what's wrong with me. I don't know why I'm so anxious. I have anxiety meds, they might as well be candy.

I've seen my frogs change their skin and I thought, man I'd like to do that. It's as if they peel off their skin from the bottom then lift it over their head as if to lift off a dress or a shirt. Off with the old, now the new is bright and pretty. They do it in one swish, expertly.  ...continue reading "Uncertainty brings anxiety"

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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