Foolishly Free Associations: Life Planning - School House Rock - Fine Print

Where is the line between worry and planning?
How do the tough decisions get made?
Life has been trimmed to a postage stamp,
There's not much left to subject to the blade.

These sentiments I wrote a few months ago
when pondering my future and function.
Since that time I've been frequently amazed
by the non-linear nature of my shifting malfunctions.

Having just re-read the verse above,
I free-associated over to some School House Rock.
Function, malfunction, Conjunction Junction.
And or but while if only although nor not.

I'm now inclined to wielding plenty of subordinate clauses,
operating under conditions of if, and, but not that.
But dang if these tightly crafted contingencies
provide no guarantee that I will not wonk or easily splat.

Deciding I should plan, again to the fine print I go
yet to interpretation issues do I frequently resign.
...in order to be eligible for these benefits,
meet said conditions and ensure planets are favorably aligned...

...this benefit is effective after five months, nine days, and two hours
but only if you're in possession of a red-headed stepchild...
[Whereas it will allow you to not sleep under a bridge,
it's likely enough for a fishing shanty - hey, let yourself go wild!]

...in the event that condition A overlaps with condition B,
condition B takes precedence as long as you own a pedal harp.
...this will also apply to non-harp owners who establish proficiency
at singing in harmony but most definitely not in C sharp.

...in the event that you are not musically trained or inclined, 
completion of the nine page appendix, 52-c.1, on musical collections will suffice.
...include collection descriptions and original purchase documentation of 
Elvis, Patty Larkin, Patsy Cline, Billie Holiday, or Ray Price

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Friends, Cookies, The Cat and Good News

Sometimes when one set of my neurowonk symptoms ease, another set becomes more prominent. The carefully crafted accommodations and ways of maneuvering through life don't work for the new set. That's where I'm at right now. I don't think it's the new normal. Just the now-normal -- things are squeezed a bit tighter for now.

I want to celebrate some of the support I'm learning to ask for, the terrific things folks have done or offered to do for me, and the good stuff in general. I've been a solo flyer in life so this is new to me.

• My pal Diane knew I was worse off this week than usual. So, she offered to do my grocery shopping for me on Saturday night after river kayaking (her energy is endless). I accepted. It was hard. But, it was a load off as that's one of the most rugged tasks of the week. She called me twice on her shopping trip -- so for the eggs, do you want white or brown, cage-free and/or organic, what size...LOL.
  
  
• The next day Diane dropped off some awesome gluten-free cookies for me...life is much better with homemade cookies...most excellent!

• I needed to go in to work for an early afternoon meeting on a project that I'll be part of this year. There were logistics issues with driving and the bus. So, I talked this through with a co-worker on the project -- she offered to give me a ride one or both ways. She used to race cars and motorcyles, so it would definitely be faster than the bus.

• Jake's been rather calm since the vet visit. I think he knows I'll be his forever person although he still frequently hollers and tackles my feet if I get close to the front door. In any case, when I work from home and am going between two laptops, he gets jealous. So, he intermittently parks himself on the keyboard to stop me.

• I think he updated my Facebook status to Will be offline for extended period of time. My priorities have been askew -- my cat needs more attention.
  
  And, yes, he's allowed on the dining room table. The plan had been for us to pretend that it's forbudt when my mom visits. So, I acted aghast and half-heartedly hollered at him. Jake looked disdainfully at me, while Mom rolled her eyes and didn't buy any of the act. We had a good laugh trying.

• I've thought of paying someone to do a deep clean on my place once a month. But it so goes against the grain to spend money on that when I'm trying to be frugal for my unknown future. A co-worker offered to come do some cleaning for me. She actually brought it up. Hmm, not sure about that. Dare I ask for bathroom cleaning or just keep it to floors?  :)
  

There aren't very many people in my life anymore. But those who've hung around are bomb.

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Good news this morning -- the biopsy indicated my last thyroid nodule is benign. I'm still sporting a sore yellowish-green neck. So, I'm glad I don't have to do that again. Woot!

But your cholesterol is great

I purposely haven't written about the various doctor appointments and such since going back to the diagnostic drawing board. I'm ready to again although it's so jumbled. Keeping this inside is turning into anger. Not the useful kind rather the type that seeps out when you don't intend for it to. The kind that I don't want to own or at least propagate.

I'm angry that I catch things and make the self-referrals. So far, I've been the referrer (is that a word?) on all the big discoveries on this journey. Where are the GPs who actually help patients with coordinating multiple complex conditions? Grr. As much as I believe in patient advocacy, I really think this journey would have been different and more efficient if I'd had someone at the helm, like a primary care doctor.

I see some of the mistakes I made in retrospect. Point being though -- I did the best I could without much guidance. And, in the face of docs being out-right dismissive or not really knowing what to do with a complex patient. A woman with fatigue prominent in her symptom complex and who is difficult to diagnose often gets sent to the dump station in regards to diagnoses. I never would have believed my journey if I hadn't lived it. I openly admit to being jealous of those who receive quick diagnoses.

The most recent new internal medicine GP was referred by other docs in the large clinic I go to. She's young and still proving herself. However, she's already missed blood work issues that one should be looking for post-thyroidectomy and is confounded at my non-MS CNS demyelinating wonk syndrome and issues piling up. She keeps telling me to be patient with her while she wraps her head around my case. Three months and counting. Recently she made an unbelievably lame referral that I won't even go into. Let's just say I was outraged. So, was everyone familiar with my case. I didn't pursue it.

So, I self-referred back to the Rheumatologist I saw last year. He's refreshing in that he knows I'm sick and zoomed in right away on several things including my heart. The ECG was somewhat abnormal. He caught something on my blood work from the GPs office - grr. He also pointed out that several other autoimmune conditions aside from MS cause lesions on the brain, especially non-specific ones like mine. Yes, I know. I've been trying to point that out to doctors for a bit. I think we'll be looking at the connective tissue diseases. I think Lupus was the suspect last year. It didn't get pursued due to med reactions and then the brain tumor distraction. But I'm jumping ahead. I'm scheduled to return for a 2 hour appointment.

I also broke one of my rules. I don't usually mention labels since docs will think you're self-diagnosing and get bunched up about that. However, I asked for a specific condition to be ruled out. It's actually a neuromuscular condition. He didn't flinch and agreed. He'll run the first-line test and I'll see a general Neuro in...March. Sigh.

Meanwhile, my shortness of breath and wonk get worse with exertion. And, exertion is now classified as being upright and talking for any length of time. I have strangers approaching me in public expressing concern. It's kind of them. It's all strange. A friend did my grocery shopping for me this week as that's my most difficult task. The new normal keeps shifting.

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On an amusing note...I thought the Rheumatologist knew about my brain surgery and had it in his notes. So, while I was recounting events I casually referred to my craniotomy. He instantly sported a smug amused smile. Like, oh these patients, and how they mix up medical terms. He responded, "A craniotomy, eh? How'd they do that?" I was a bit confused and responded with, "Well, they drilled my head open. And..."

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Purchased from Cartoons by T-McCracken

Needle Biopsy Tomfoolery

Aack, aack, aaarrgghhh, aaarrrgghhh, completely brutal. I'd be more explicit but my mother reads this blog. So, aacckk, aarrrgghh, super-über-aaarrrggghhh!

I just returned from my third needle biopsy on my thyroid and this was the most brutal. While certainly not looking forward to it, I had reassured myself prior that I was getting sturdier about these things. Spent the morning working at home not thinking about it much. A pal came by and gave me a ride. On the way he asked if I'd taken something to calm me as I didn't appear anxious. I replied that no I didn't think I needed anything this time besides I wonky walk if I take something. What was I thinking?!

I've admitted before that my continual exposure to various intrusions on my body - staples in the head, needles in the neck, needles in muscles or repeated shocking, lumbar puncture - has not made me hardier but rather wimpier. Somehow today I felt grounded and solid -- man, was I drinking the punch. Again, what was I thinking? I still take valium for my rides in the MRI tube.

We had a hard time positioning my head for the procedure. My brain surgery was on the back of my skull and a good portion of that area is still numb/hyper-sensitive. If I rest my head on it without enough padding, the sensation is, hmm, kind of feels like my head is collapsing on itself. Hard to explain. So, they tried to work with me on that yet get my neck really exposed. We thought we found a position that worked until I started seeing stars. Oops.

One of my past biopsies was unclear due to not having enough of whatever they get out of my calcified thyroid cysts. So, this doc was determined to have enough sample for the lab to make a clear diagnosis of not malignant. Have to admit that with all of my other medical adventures, this hasn't been on my mind. Anyway, he took twice as many samples and really went to town jabbing at all angles for a much longer time and harder than the last biopsy. No comparison. I couldn't help but groan and flip my feet wildly in windshield wiper fashion. The doc almost stopped at four samples but we all decided that we didn't want to reunite under these circumstances again. So, we continued.

The lab tech told me prior that this procedure was like getting blood drawn. Pleeeze. I asked her if she'd had this done. No. Well, I have - there's no comparison, at least the way it feels on my body. The doc noted he'd be using needles the size of acupuncture needles. Once again, pleeeze. I get acupuncture and this is not in the ballpark. I gave him a bad time about it afterwards. He laughed and said, "I only claimed the needles were the size of acupuncture needles. Didn't say it was like it. You need to listen to the details."

All I have to say is if I'm doing this mofo again, I'm getting whacked and wheeled in if necessary.

Psycho-boy Jake

I'd been putting off taking Jake in to get his shots. Handling a carry cage with a large writhing cat in it seemed daunting. But mostly I didn't want to do it as he'd been a practice cat at a vet school and earning his trust has been a long road. It went well -- the slow and gentle care he got actually made me a bit jealous.

I adopted Jake about eight months ago. When I had my big flare this last year, I knew from the past that I'd be sidelined for a long time -- hanging out by myself at home when not at work. I wanted some company. I looked online at cats for adoption for quite a while before finding him. I was looking for a cat not socialized to kids, dogs, and other cats. One that would thrive in my quiet place and being alone when I'm gone. One that was possibly a bit aloof.

The woman running the animal rescue place explained to me how traumatic it was being a practice cat at a vet school. Having been "handled" a lot by the medical system and being half a year out from staples in my head, I felt a kinship to him. She pulled him out of his cage and handed him to me. He was growling but reluctantly went along with it which was good -- he was heavy and I was weak. I knew he was the cat.

Friends with illnessses had suggested to me that I get an animal for companionship and comfort. They spoke of the how their pets "knew" when they weren't feeling well and would come to them. I'm not sure what I expected, however, the first time I cried in front of him he got up and disdainfully walked out of the room. I told him that there was a cage waiting for him at the shelter -- he didn't appear concerned.

A couple months after adopting him, I had a long day at the hospital. Unpleasant tests and pushing on through my fatigue zone took it's toll. My pal drove me home. I got on the floor to pet Jake, he walked away after a bit. I stayed laying on the floor for half an hour. Not upset just empty. No energy. No reason or inclination to struggle to get up. Eventually Jake came and curled up with his back against my stomach assuming a protective stance. It was the first time he really reached out to me. Not terribly affectionate, somewhat self-conscious, but oh so sweet. He's steadily become more affectionate interspersed with wild psycho episodes. What interesting company. Perfect.

A couple years ago my pal Ann called and was talking about the cats she'd adopted. She swore that she wasn't one of those "crazy cat ladies". I was unconvinced after 10 minutes when she was still talking about her cats. So, I'll come out and directly confess, "I am one of those crazy cat ladies."

You Tube video: Simon's Cat - Fly Guy

Relentless

That's the word that echoes through my mind lately...relentless. I want to be witty and share the philosophical or absurd. I want to have something to say that's not tired and grating like the needle being stuck on the vinyl. But I don't.

I have many things happening on the medical front -- some give me hope. But I don't want to hope too much or too soon. That too feels old, tired and stuck. New and shifting symptoms. Yet even the newness in the continually shifting new-normal feels old. Yeah, relentless. It could be worse.

Traveling, Canes and Deductibles

I traveled to snowy Colorado for the holidays to be with my family. It had been three years since I'd done that due to surgery and illness. And, while I often say that it's not big a deal to spend holidays alone, deep down I think it is.

The time with family was low-key but good. I was fortunate that I felt and functioned relatively better than usual. Although I did feel lost in that limbo place of not being well enough to do much but not needing to be completely inactive. And, I felt watched. Not in a bad way. I'm just accustomed to hiding in my condo with psychocat and no one really seeing me. Fortunately there wasn't anything too exciting to observe.

I was nervous about traveling. All the little things to coordinate and hoping to make it through each stage before wonking hard. And, not knowing what I really needed. In my little postage stamp life, I rarely deviate from my beaten path of close-to-home places of known factors. I understand my grandmother more each day.

My function often changes radically as the day progresses. It's confusing to others and sometimes myself. When I arrive at the airport early in the day sporting a cane, I feel like a bit of a poser as I'm walking and talking pretty. But at the end of the journey on the return, well, no posing then as I walked through the valley of molasses fearing all sorts of ambulation evil.

Likely I should start using the cane more. But I tend to not take it with me since I usually start the day out well and don't need it then. And, generally I try to be home for the staggering wonk phase. However, recently a stranger, a neighbor and a co-worker all approached me on different occasions with concern. I guess the cane would somewhat reassure them when I'm staggering around -- might help me out too.

Well, 2010 is off and running. Have already faxed medical records forms, made phones calls, set up an consult with the Rheumatologist from last year, scheduled a thyroid needle biopsy and a couple other things. It appears that I'll meet my annual deductible again before the end of January. Grr. Am grateful for the insurance.