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I complained about Zanaflex saying I can't stay awake and that I can't tolerate this stuff, but I was violently reminded why this medication is part of my regimen. There is no justifiable reason for one's body doing this stuff, for spasming so hard that panic sets in. Again, I looked around for someplace to run, for a way to get away from myself. I have to remember to breathe, to use my coping skills for pain management so as to help myself emotionally through the spasms and burning sensations.

Of course I have wild sock combos. I'm an artist. Yesterday it was my left side that bound hard, let go, bound up then let go. The thing is, at one point it the muscle on my left side spasmed and held. I tried not to panic. I went to the room and got in a position that helps ease muscle spasms in that area. I put my feet on the wall in a bent knee position to get a good, deep stretch. Also on the wall are trigger point pads for my feet. Since my feet are sensitive I have to put them under the hanging quilt so the points are dulled just a bit. The position helps. It took about 10 min in that position to feel a difference. By then medication time rolled around and I could take more Zanaflex....and sleep off the horror. I wasn't upset about sleeping, not this time.

Clyde stays with meCRSD is a violent, unrelenting, sadistic disease. I'm amazed at the different ways it can find to harm the human body and maim the mind. PTSD associated with medical trauma is no longer a new understanding for me.

 

It's a different kind of world when photos of your feet on a padded wall becomes a photo op for a blog entry. I wasn't in pain at the time of the photo.

She nixed the Gabapentin and Cyclobenzaprine which no longer work for me and exchanged them for Lyrica and Zanaflex. I'm already on Cymbalta with Abilify. This is a combination I've not had before, one I really need to give some relief. I'd take a level pain 7 with no questions asked. If they could just get me to a 7. I know there are a few moderate potential problems with this mix but being in pain makes me willing to take the risk. I'm monitored very carefully.

I said this wasn't the doctor for me but we'll see. The first two appointments with her weren't promising but it's gotten better. She was pleased to see that I've lost 23 lbs since August. She was pleased to know I got Clyde and that we're walking daily. Today has been harder than usual because my left knee is swollen, so our walks aren't as far away from the house. We walk the courtyard several times which is a good leg stretch for us both. ...continue reading "Medications. GP Impression. Decompression."

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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"

We talked about the grieving process. I haven't been emotional in front of people, which may make me seem cold to her passing. It's been more private and I'm certain it'll stay that way. I'm running, that's for sure. I need distractions; I have them.

One distraction is the mean streak of Betty. I could go on and on about Betty but why? Until I change it, there's no reason to go on and on. The woman is a constant problem.

I told Dr. D that I'm working on getting different transportation to the store on Tuesday's but that I have real problems in cars. The only place I'm terribly claustrophobic and scared is in a car. I need to know I can get out and I need to know the person behind the wheel won't attack me physically. I need to know they aren't going to start hitting me, slapping me, threatening to drive into on coming traffic, won't scream "I'm killing us all" followed by driving off the road to wreck the car. (Times like this make me think I hate my mother.) ...continue reading "TR: Jane. Pain. Alternative Medicine"

I'm holding back when it comes to posting art work other than sketchbook art. I don't know why but I feel so closed up right now and not willing to share the new stuff. I suppose I will again soon.

Janie TimeJane has good days and bad days, today is a good day. She has finished 2 of the three medications. Pets get old, get sick and they die, and that sucks. I have good days and bad days, today is a tired day.

I've got another month of dental work coming up that I'm not looking forward to. Also, there's a lump in my mouth that they need to look at closer. I wanted this dental stuff to be over with but it's not. I can tell there's damage to the nerves which has added more pain to my plate.  ...continue reading "Holding Back. More Dental Work. Blood Stream Infection."

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I feel a turning I can't stop
and the reemergence of pain I can't bear.

She looks through me, laying on the floor on a make shift pouch of blue,
her eyes are in my direction, but she looks through me.
I watch her belly rise and fall as if my own life depends on it,
because it does.
I stroke her head, travel across her frailty to absorb every ounce of pain through my fingertips
like any mother would,
just to see her baby get up again,
to see her pounce, sleep on my shoes, curl up in my favorite chair
or loudly sound the dinner bell.

I hold her close and share my warmth
as if to will her gums pink with life,
make her paws stretch open then close around my finger as before.
but she just looks through me,
spent, she looks through me.

Jane did something today she hasn't done in nearly two months. She climbed on me and licked my face until I woke. She wanted breakfast. I'm also happy to report that her gums are pink! They're pink!!!!! There's a turning in her health, one I had given up on at the writing of the above piece yesterday. I need so badly for her to recover. I said it means my life. Of course I will not die a physical death, but I don't want my connection with Jane to be severed by death. I don't want this to end. ...continue reading "When Pink is Beautiful. Long Term Health Care."

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"

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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"

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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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