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I've been reading about staying positive which can be difficult for me. One of the things I've been trying to remember is that even with my health issues, I've not lost everything. I made a short list of things I've learned to do while in bed and while pacing at home. The reason I learned these things is that it's difficult to sit. It's painful so I end up  lying down or I keep moving while I'm up. Standing still doesn't go well for me but as long as I keep moving I'm okay. So, here is my photo for the 17th of this month and my list of things I can still do:

  1. Complain. I can do that in whatever position I find myself in. I complain in English and American Sign Language. I'm currently learning French, which isn't killing me this time around.
  2. Paint. I can paint and draw while lying down. I've covered my bed so as not to ruin my mattress. It was my greatest concern that I wouldn't be able to paint because of needing to lie down so much.
  3. I can sew while lying down. This was a welcome surprise. I have to be a little more prepared but it is still possible. I just finished and adopted out two dolls and I've started on a custom order doll today.
  4. I can study and take notes in bed or on the sofa as long as I have my tablet and supplies with me. I can read and pace at the same time which I do quite often.
  5. I can produce hand written letters of encouragement to others while in bed. It's important to always reach out.
  6. I can still receive visitors if I'm on the sofa.
  7. I stand while making tea but I have a no spill cup that allows me to drink tea in bed. Yup, gotta have that tea no matter what.
  8. I can enjoy the sunshine on my face from the comfort of my bed. I can see the sky and hear the birds and ducks.
  9. My smile isn't broken because I'm lying down. I still have a sense of humor.
  10. Possibilities. Options. Hope.

...continue reading "What I can still do"

2

I got a call from a medical supply company saying I don't have the right kind of pain for my insurance to cover TENS unit pads.

I laughed. She said, "I can hear the anger in your voice." I said, "As we speak, my shoulder muscle is so tight that my pain level is rising higher than I can stand." She said, "If it were up to me I'd sell you a TENS unit on your insurance, but it's not up to me. You don't have the right kind of pain" I said, "Please read to me the dx on my chart." She read off 5 major illnesses. I said, "Tell me please, what kind of pain am I missing?" She said, "Neck pain." I must have neck pain for 3 months before my insurance will pay for the pads that make my TENS units work. I mentioned the current problem, the DJD, the herniated disks I've been dealing with for two years now. Of course I have neck pain, but that's not listed as 'a major event'. A major even? ...continue reading "Not the right kind of pain"

2

Mary Jane rests with her hand on my artwork
Mary Jane rests with her hand on my artwork

It takes a bit to accept things and it takes a bit to be able to do what's best for Jane. When she was seen a month ago ?? concerning her condition, I knew she was in trouble but she seemed to get better. She gained a few ounces and things appeared to be looking up, but I understand the road ahead isn't one that can be taken with confidence, not here with me.

I know Jane is 16 years old with feline renal failure. I know there are still things that can be done, but those things cost. What I decided to do, and what I talked over with friends for the last two days, is to surrender Jane to a low kill shelter. I will bring in all her paper work and tell them all that's been done for her here. I will tell them that I'm surrendering her because I know more can be done but not on my income. I don't make enough for the ongoing cost. Even if I moved to a low income apartment, I couldn't afford the care Jane needs.  ...continue reading "Mary Jane in Renal Failure 2"

2

September 17th 2017 - why do I look so shocked? I still take photos on the 17th of each month then look at them all 12 at the end of the year...and in between. It helps me have a better understanding of what I really look like as opposed to what I think I look like.

I feel disgusting. I'm not looking for compliments, ok. I feel disgusting. I feel like a fat slob, ugly. Why? My weight it out of control. It's out of control for many reasons, primarily steroids and other medications.  ...continue reading "The 17th"

1

I'm tired. It's been a very long day.

My frog Pete died a few days ago. He was 12 years old. It breaks my heart that he's gone. The house doesn't feel right without hearing him call at night. I now have two Chubby Frogs and hope to get a Dumpy Frog (White's Tree Frog) somewhere down the road but right now I intend to focus on Mary Jane and getting her better. Her fever returned and has been pretty steady. She comes out of her corner a few times a day but always goes back. She keeps trying to find a corner further away, darker, smaller where she can be alone. I feel bad for her. She still fur and bones. She gained a few ounces but she's still skinny, she looks so bad.

I have lowered prices in my Etsy shop. There's no sale, no code to punch in, just lowered prices on most items. The price decrease is anywhere from $5 to $50. I've lowered prices on most of my items so I can get serious about saving money for Mary Jane's treatment in her senior years. She's never cost me much money so I didn't worry about not having savings specifically for her care, but recent events have shown that I need to have funds available for vet care and medicines. My shop prices reflect the need while giving me a half way decent profit.

The bookmarks I'm making for a good friend are coming alone nicely.  ...continue reading "Letting go. Etsy and Janie. Evil Cow Landlord."

I'm to the point where I feel like this is all surreal. I'm on the emotional brink, just exhausted. I'm maxed emotionally and physically. Jane goes back to the vet for a scheduled visit. I have to break it to the vet that I missed several critical days of  one of her medications because I administered it incorrectly.  I have one more dental visit on Tuesday then services Thursday. I've studied in between issues with Jane while camping out in the living room. I've done my daily cervical traction and other stretches but my right shoulder is giving me the blues. Honestly, I'd love to get outside for a walk, leave this apartment and clear my head in fresh air. There are some choice moss patches I need to visit. Need is a strong word but, when is getting more moss less than a need? Moss is wonderful. Terrariums are wonderful. Moss is a need.  ...continue reading "Emotional and Mental Crash. Exploding Wine."

They said if I wear this little patch it'll help; it does.
Hope - My Face My Art

My Face My Art - The invisible illness becomes visible.
It's as clear as the art on my face.

The three art pieces used in this addition of "My Face My Art" are: (drum roll please) ...continue reading "Hope and Art"

2

A phrase went through my head this morning that tells me that my instincts about the GP I saw yesterday are correct. I need to move on. She's not the one. I'm writing things down so I can remember the entire experience.

This morning I remembered that while talking about me taking pain meds from time to time, the new GP said to me, "But Dr. Old GP wants to move you away from any pain meds."

I'm not seeing Dr. Old GP so why are we talking about what he wants to do for my care? ...continue reading "My instincts are correct"

2

I saw the new and temporary general practitioner today. It was crazy right out of the gate. Within ten minutes of being in her presence, she suggested shock therapy. I nearly walked out. She went in to how it's not like what you see on TV and blah, blah, blah. I told her I'm not interested. She then wanted me to add Abilify to my psych meds. I don't know much about it. She said it's supposed to help make the Cymbalta work better.

I decided to call my old nurse practitioner who is retiring. She's the one who handled my psych meds. This is where trust comes in. I don't know the new GP. There is no consistency to fall back on, no working relationship, no track record to rely on so I don't know why she suggested this medication. The old nurse practitioner said that Abilify will add dopamine (the good chemical) to help with my mood so I can get out of this depression easier. Shoot. I can do that with chocolate and wine and earn the dang weight gain. Okay... I'll try the 2 mg per day.

I'm not happy about the weight gain issue especially since I just lost 10 lbs, I don't intend to be on Abilify forever. I will lose the weight and feel better in my head. I need that very badly.

Also without knowing my history, she told me to go purchase some Black Cohosh to help with Menopausal issues. I absolutely can not take that because I have had a stroke and I have a history of blood clots. Between shock therapy and just popping off with Black Cohosh, my confidence in her is minimal.

I'm horrified by the suggestion of shock therapy. When I told my old nurse practitioner said, She just threw that out there the very first time you saw her? I said, yeah, within ten min. She said. tell her you'll have it but she has to go first.

I've not seen the movie One Flew Over the Cuckoo's Nest, but I hear it gave people a bad view of the treatment, which is making a come back. In its defense, I've heard "Films such as One Flew Over The Cuckoo's Nest did for ECT what Jaws did for sharks". That isn't a valid argument because sharks kill people and so does shock therapy. No matter the stats, I don't do water so no horrible shark death for me. I don't do ECT which means no electrical mishaps. I don't care what you say, shocks and sharks are bad for your health.

The new GP wants to see me back in a month. In that session we will discuss pain and what I do to manage it. That session will make or break our future relationship. I need to know where her head is in all this.

Back to the old nurse practitioner. This woman told me that when I go to see a new psychiatrist I should not bring up that I'm in therapy. She said to give them as little information as possible. Don't tell them I have DID. Don't tell them I have PTSD. Don't tell them about my abuse history. Tell them my brother died and I need medication for depression. I feel this is bad advice. This is where knowledge come in. There are certain things doctor's need to know. Not every doctor needs to know absolutely everything but if you go in for psychiatric care it might be a good idea to give them some history, ya know? There is a trust level with the old practitioner. I trust that sometimes she's going to go off the deep end.

Withholding that kind of information with my medical history is a very bad idea and it goes against everything I stand for as a patient. I am honest with my doctors. I need them to trust me as much as I trust them. Not everything needs to be disclosed but I don't think believe completely withholding information is a good call either.

 

Jordan

10 pm
My right leg is still swollen but it doesn't hurt nearly as much as it did yesterday. I'm still wearing compression socks.

I fell asleep shortly after writing my last entry. I've been sleeping for a very, very long time, all day and night. I got up to use the restroom. I got up to feed the cat and take medication, other than that I've been sleeping. I couldn't keep my eyes open.

11:48 pm
I went for an orange and got distracted. I cleaned the kitchen and vacuumed the floors. I had an orange, water and some tea.

Yesterday evening was scary because I wasn't sure I'd wake up today. I jotted a quick note to my friend Snow and closed my eyes. The leg was really bad yesterday.

One of the best things for edema is activity. I need to increase blood flow. I also need to be conscious of what I eat. I don't take a lot of sodium but at this time it's best to be even more careful with it. My stretches will be important. My vascular issues are Lupus related which means the root of the problem is in my blood and immune system. If I am to have any impact on this I'll have to do it from the inside out. I have to get that turmeric, ginger and black pepper back in me on a regular basis. I have to get cinnamon and garlic back in me as well as organic honey. These are vital. Funny how I can now see how vital it is after having stopped regular intake for nearly two months. ...continue reading "Lupus and edema. Dignity in life. Finding light."

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