Burst!

The psychology of the mind is a fascinating thing. I just walked in my door after having a tooth fixed and paying $200 for it on my credit card. Two hundred dollars I don't have, that is.

As I came in I checked my mail and found a vintage pattern which I'd ordered off of Etsy. I opened it, cranked up the radio and danced and jumped all around the house. I had an actual, %100 real burst of energy! I did kind of a dancy jumping jack and spun my hoop around and basically jumped and jumped to the music.

Getting a burst of energy wouldn't be so remarkable if it wasn't the first one I've had in about 4 years. I'm excited! I'm excited about being excited and excited about having an outpouring of bouncy energy! How exciting.

Sigh. I'm so happy I could be dancing on rainbows and unicorns. I know that sounds crazy but I do. I made some tea, grabbed my sketchbook and began scribbling all of my crazy ideas.

I've been having such a hard time because of the sleep medication switching and all of August has been a bust (not a burst). What a waste of a perfectly good summer. It's all in the name of moving forward, though. I hope this new feeling is signifying a turning of a corner. If it is then I will call this forever more the Turning the Corner Day.

Of course it's a lot more reasonable to assume that I will continue to get better in an ebb and flow. I always think of healing, emotional or physical like the tides of the ocean. Even when the tide is coming in, the waves lap forward and back again. Relapsing is all part of getting better, it will pass.

Somehow in the last couple of days I've had a breakthrough of sorts. The last several weeks have been so sad for me as I wait to get functioning again. The first few weeks of the medication switching left me waking up in the morning and not being able to move all day. Not being able to do the housework, not being able to lift the hoop. I was winded from getting up off the couch or bed. Lethargy is so unnatural for me but has been my prison for over 3 years.

I have felt like my mental wheels are spinning but not gaining any traction. I have a mounting list of things I want to do, life is waiting for me to get up off my ass! I have artistic projects I want to get to, paintings that need to be done and ideas begging to be realized. All I could think of was that they will never get done. Ever.

Failure is my new reality.

I've been feeling depressed and had ugly new feelings of envy and severe loss. I've never felt envious of anyone before.

I think I've gotten through the things I have in my life because I always take a good hard look at negative feelings and try and find the source. Being overwhelmed, anger, fear, depression are all good feelings because they are big signs that are telling you something is wrong. Well, for me anyway. A friend of mine confirmed this belief when I mentioned the strangeness of feeling envious of others. She said, envy is like a map, which really lines up with the ideas in my own personal coping strategies.

I can usually sort my way out of the things that are causing me to feel whatever crappy emotion that's plaguing me. I posted on a forum about feeling like my life is weirdly empty, mostly so I could see it myself. I chatted with a couple of people and had an Oprah, Aha moment. It suddenly became clear what I need to do.

I need to be around others who are creating and instead of telling myself that I have too many ideas and I could never possibly do them, I just said yes. I want to sew some clothes but don't have a sewing machine, that's okay, I'll borrow one. I want to make some things out of wood, go for it. I want to jump off a cliff into the river, of course! I want to paint, yes, yes, yes yes yes.

I am being so much kinder to myself by saying yes. Next thing you know I am dancing around the house!

FLASHDANCE!

Normal is on the Horizon

Sleeping is so hard and gross. Every night it's a big chore to try and get to sleep and when I do it's like skipping a rock across the water. I'm only skimming sleep. While partially asleep I'm having complicated dreams about past emotional losses, torments and having adventures in detailed claymation scapes. I know. I'm odd.

Apparently this is all part of the process to get me sleeping again. My GP did tell me that I would start dreaming again but WHOA! Wild wild mental night escapades. Despite it being a form of torture and me involuntarily staying up until 1:00am and being in bed until noon, I am starting to feel better again. After 3 weeks of getting winded walking from room to room I have picked up the hoop again and even partially walked up the mountain.

When I did go up the mountain I was super slow and had my agile 14 year old saying, "C'mon mum, hurry up, c'mon, c'mon, c'mon". I would have strangled him if I had been able to catch him.

All in all things are getting better. It's just so aggravating that after getting a bone marrow transplant it can be like having a clunking car engine that needs a major tune up. Everything, EVERYTHING is off kilter and it makes living hard, but if a whole lot of things can get adjusted back into place (hormones, muscles, sleep, medicaions etc. etc.) then a "normal" life is on the horizon.

It feels fantastic to be able to say that.

Two Steps Forward, One Step Back

Ugh. So much has gone on recently. Lots of good news! I went to my usual oncology appointment last Tuesday and my Dr. decided that my body is finally settling to a good place. My blood work looks normal (add squeal of delight here) and that the GraftVsHost has calmed down to a safe point. Safe enough to start decreasing my cyclosporin (anti-rejection drugs) and drop most of the other meds. My body should finally be able to take care of itself!

It was a bit of a sudden occurrence being taken off of so much so quickly. A bit shocking, really. I had mentally come to a point where I was just accepting that who knows when I would ever be taken off all that crap. Life saving crap, that is. I also don't have to go back to see her for 5 months! As I walked out of that appointment, I felt I was walking out a free person. I still have to have my bloodwork taken every two weeks to monitor my progress but that's okay.

To me the mental picture of this moment looks like a runner carrying a torch through the finish line. What a looong haul this has been. I feel a longer term of hope is seeping through to my consciousness. I can have bigger hopes now and longer term goals. I'm pretty damned excited.

I'm also exhausted. I've been pushing for my doctors to get to the bottom of why I don't sleep so that I can. Nobody can function or heal when they are severely sleep deprived. I had extra bloodwork done and they determined that I am severely menopausal. Severely! Many apologies to my sons for my moments of severe menopausal snarling beotchyness.

My oncologist explained that few people sleep through the transplant process which lasts a couple of months. Mine then probably switched over to chemically induced menopause which for me includes not sleeping. I hear many women close to or into their 50's complaining about the same things. Not fair at 36! Whatever, life isn't fair.

So my GP has switched me over to amtitryptolyne (probably spelled that wrong) to help with my sleeping and to get rid of all my body pain. I was quietly suffering from several types of pain 24 hours a day. Muscle pain, carpel tunnel, nerve pain arthritis etc. Well, just like magic it's gone! I can't even believe all that pain is gone. I also can't believe that I considered that much pain to be the least of my problems, in fact I barely even mentioned it to my doctors. I just thought I had to suck it up. My GP felt I had the body pain because I didn't sleep, therefore my body could not heal. The pain then in turn kept me awake.

Life really can change on a dime. I had been really hoping that my next spin on the dime would land me in a better place. I think I'm heading there.

Because of my night time medication switch I've been deprived of over a week of sleep because the amtitryptolyne takes 4 to 6 weeks to be fully effective. I'm about at 3 weeks now and it has been helping but I'm so tired I can hardly move. I've even gained almost 10 pounds :( That may also have something to do with the strawberry cheesecake slices I've recently discovered.

I feel like hell and have bags under my eyes again but I know that things are going to get better from here. Much better!

Here is the list of medications that are changing and/or have been dropped.

zopiclone for sleep - changed to amtitryptolyne
cyclosporin anti rejection - dropping and will be off in 3 months
fluconozole anti fungal - dropped!
valtrex anti viral - dropped!
septra protects my lungs from pneumonia - dropped!
pariet for acid reflux caused by my other meds - being reduced

prometrium for menopause - will always have to take it
estrogen patch for menopause - will always have to take it

Several people I know have said that I look like me again. They also say my energy has changed for the better. Hope shows.