Atypical mole is atypical

See more on Know Your Meme My dermatologist just called. The pathology report came back mildly atypical. Which, for me, is probably not surprising.
Anyway, I just have to be really good about regular skin exams and protecting myself from the sun.
Yay!!!

In slightly related news, while yelling, "kiss my ass, this is a holy site" does sound very much like something I would say (and, in fact, possibly have said) I have not joined the Romney campaign. And if I said it, I was probably at an archaeological site. And joking.
Actually, I tend to make jokes about "look, sir, droids!" while pointing at all the things on site tours. Or try to get Tom to play blaster fight "pew pew pew."
And then everyone looks at me like I'm crazy.
Sigh.

Distrustful Talpid

English: European mole Talpa europaea (Photo credit: Wikipedia)
Does not resemble my suspicious mole.

Finally got around to seeing a dermatologist today. I'm having major cystic acne issues, wanted my vitiligo checked out, and had some moles I also wanted checked out.

The doctor was concerned about one in particular. On my left hip/ass cheek. So, shot of lidocaine in the ass and they scraped that thing right off.
Pathology report should be back in a week. Aches a little but I'll live.

So, think of my ass for the next few days. As much as I would enjoy randomly telling people I have ass cancer, because I am really that immature, I don't actually want ass cancer of any variety.

Dermatologist was otherwise very nice, no high-pressure "buy our super fancy expensive skin care products!" or anything.

So, I have stuff that will hopefully help deal with the crazy acne (one of the few downsides of my Mirena). And I need to continue to coat myself in sunscreen, which I hate because it makes me feel all coated and sticky and weird. Buhhh.

Girly Fru-Fru Stuff

I got my package of wonderful soap and shampoo bar samples from Chagrin Valley Soap today. Opening our mail box sent the most wonderful minty-herbal scent wafting out. I had taken Oreo over to the big central mail box thing for the apartment complex and actually wound up using the lovely scents to keep him moving.
He's a sucker for pretty smells. Loves chamomile and baby's breath especially. No idea why.

Anyway, my acne has flared up something fierce lately and I've been getting sores on my scalp again. Not fun. I seem to be getting the acne to ease off a little, but cycling through my shampoo/conditioners and even trying some new ones hasn't helped the head much.

I had tried Chagrin Valley shampoo bars several years ago in Chicago. I had fallen in love with LUSH products, but not so much some of the ingredients or the price tag. I had chin-length hair then. Between the water and the hair, I just could not make a go of them, even waiting several weeks, vinegar rinses, etc., etc. So I used up the bars to wash the rest of me and that was that. Then I found one of those old samples stashed in one of my dresser drawers (they smell wonderful, so they serve double duty as potpourri when not in active use). Used it to wash hair and face and it turned out very nicely. Several days in and I don't have that weird grungy-greasy feeling, haven't needed to do a vinegar rinse yet, and scalp sores seem to be improving. I'm guessing the change in water and maybe in hair length helped.

Anyway, Chagrin Valley has lovely, lovely stuff and it is incredibly reasonably priced and there are samples for nearly everything. So I grabbed whatever looked fun. They also have doggie shampoo bars. Tom discovered they're easier to use on Oreo than liquid shampoo when we borrowed one at a friends place. And Oreo is also having some skin itchies, so I'm hoping this will help.

I also scored a solid lotion bar. They're made of waxes and oils that are solid at room temperature but melt when massaged on skin. My hands have become more prone to eczema over the past year, so this is part of my plan of gradually having hand lotion available all over the apartment and in my purse as that seems to be what keeps the itchy, nasty pustules away, but I am sometimes too lazy to hunt for lotion.

So this is the soap I've been making little soap holders for. My first one seems to be just the right size. The one I started last night is going to be too big and will probably need to be frogged. And no, they aren't paying me to gush about their soap on the internets. I will post further info as I try things out.

Also, I have started using Astrid as a to-do list reminder thing. I really like it so far. It's free, web based and has an Android app. Easy interface. You can add in a social component as well.

Bonus Oreo Cuteness

Two unrelated but awesome things

Image by Stephen Rees via Flickr
Edit: Formatting on the quotes got super weird. Trying to fix that:

The first is this amazing article by Toni Bernhard, author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (also amazing, by the way). Toni has a gift for explaining the common lived experience of people with chronic illness and their caretakers in a way that is clear, empathetic, and elegant without drifting too far into the "oh woe is me" or the "I will tough everything out and pretend everything is just fine." Definitely worth the read.
A few quotes in particular resonated with me:

Yes, it's okay to get sick or be in acute pain due to an injury or a surgical procedure, but then we're supposed to get better. Everyone expected that of me and I expected that of myself. For years, I felt embarrassed that I wasn't living up to the cultural norm

And:

Many of us believe that we've let our family and friends down.

And:

The dilemma of how to "present" to the world. Should we spruce ourselves up and risk people erroneously thinking we can participate fully in whatever they're doing?  

Also:

We're often misjudged by others if they see us looking nice or being active in any way. Healthy people tend to assume it's all or nothing: we're either sick or we're not; we're either in pain or we're not. And so, if they see us doing anything "normal," they assume we're 100% well. This has happened to me many times. Someone will see me at an espresso place with a friend and assume I've recovered, unaware that I came from the bed and will collapse on it after the visit. People aren't deliberately being insensitive. They just don't know.

And:

Caregivers face their own set of stressors. They must live with the frustration of not being able to make their loved ones better. They're suddenly thrown into the role of patient advocate in the medical system, a role for which they have no training or expertise. They often have to take over the running of the household. Caregivers see us at our worst, as we put on a good show for others (for me, this means running on adrenaline), only to collapse when we're in the privacy of our own homes or apartments.

On a lighter note, I enjoy watching jackasses get their comeuppance and boy has that happened with a vengeance with The Bloggess and a particularly clueless PR company (not the one that tried to recruit me to write for a "Mommy Blog" who had obviously not read much of anything here).
I sort of regret not being in Chicago anymore as I would have given serious consideration to dressing up like Beyonce the metal chicken and going to the PR company's offices downtown to tell them "Knock, knock, motherfuckers." Pretty sure that would have been the best bus ride EVAR.

30 Things About My Invisible Illness You May Not Know

Image via Wikipedia

1. The illness I live with is: Chronic Fatigue Syndrome, Migraine, Undifferentiated Connective Tissue Disease, Functional Movement Disorder, Hashimoto's Thyroidits, Reynaud's Disease, Scoliosis, Depression, possibly Fibromyalgia
2. I was diagnosed with it in the year: 2008-2010
3. But I had symptoms since: the mid 1990s
4. The biggest adjustment I’ve had to make is: Recognizing that pushing myself to work harder or do more is counterproductive.
5. Most people assume: If I just tried harder I could do more. That my fatigue is the same as having missed a few hours of sleep a night.
6. The hardest part about mornings are: Deciding what needs to be done and can be done for the day.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My cane, with my rubber gloves a close second.
9. The hardest part about nights are: Insomnia, pain so severe that I can't sleep
10. Each day I take __ pills & vitamins. (No comments, please) 14
11. Regarding alternative treatments I: Am cautiously aware of and willing to try some
12. If I had to choose between an invisible illness or visible I would choose: I honestly don't know.
13. Regarding working and career: I enjoy working and I sometimes regret that my chosen career as a field archaeologist in Egypt and Sudan are not really possible right now. I've come to realize though that my own physical and emotional well-being are more important.
14. People would be surprised to know: I still have times I think I'm just not trying hard enough or think I'm just lazy.
15. The hardest thing to accept about my new reality has been: I really can't just push past my limits even for something I really want to do and would enjoy.
16. Something I never thought I could do with my illness that I did was: Drive again. I've been cautiously driving short distances with my husband now that we're no longer in the crazy busy environment of Chicago.
17. The commercials about my illness: Annoy the crap out of me and suggest that medications will be a miraculous cure when it's more likely that they will be an incremental improvement.
18. Something I really miss doing since I was diagnosed is: Riding a bike.
19. It was really hard to have to give up: My career plans.
20. A new hobby I have taken up since my diagnosis is: Spinning with a drop spindle.
21. If I could have one day of feeling normal again I would: Dance
22. My illness has taught me: What is really important in life; that contentment is based on your own desires and needs and not on meeting the expectations of other people.
23. Want to know a secret? One thing people say that gets under my skin is: "oh, I'm tired/hurt too, it's just the weather or allergies."
24. But I love it when people: Try to keep in mind my limitations when planning things or ask for my input instead of assuming I can or can't do something.
25. My favorite motto, scripture, quote that gets me through tough times is: I just have to get through this minute, hour, day.
26. When someone is diagnosed I’d like to tell them: It will be hard. There will be people - friends, doctors, random strangers who disbelieve you or dismiss you. But what you feel is real, your need to be treated is real. You don't have to prove yourself to anyone.
27. Something that has surprised me about living with an illness is: How judgmental some people can be even when the illness has nothing to do with them.
28. The nicest thing someone did for me when I wasn’t feeling well was: Listen to me, believe me, help me.
29. I’m involved with Invisible Illness Week because: The way chronic illness, visible and invisible, is regarded in our society needs to change from an expectation that anything can be overcome if you just try hard enough or take the right medication, that accepting one's limitations is regarded by some people as defeat, that people with invisible illness are malingering or overly dramatic.
30. The fact that you read this list makes me feel: Hopeful.

Mummies: CT scans of Egyptian mummies show atherosclerosis - Los Angeles Times

Image via WikipediaMummies: CT scans of Egyptian mummies show atherosclerosis - Los Angeles Times

I have the pestilence (cold) from hell at the moment, but this article was really interesting and I wanted to share it.

If you hadn't already guessed, I tend not to have a lot of patience for people who overly romanticize "non-Western" cultures (and often the concept of non-Western extends into the past to mean anything prior to the Industrial Revolution).
Therefore, this article about artherosclerosis, which is typically characterized as a disease of modern life, being found in Egyptian mummies is particularly interesting. One does have to wonder how much the results were determined by the relatively higher social status of the people being mummified and their greater access to diets that may have been less healthy.

It's interesting, though, the number of people who seem to think that if we could just transport some of the basics of modern hygiene and medicine into the pre-Industrial past that it would be a veritable utopia.

Not sure if this is making much sense as I'm loopy from the cold and stuff to kill the symptoms.

Anyway, ancient heart disease. Interesting.

NAMI | NAMIWALKS

A friend of mine in Seattle is participating in her local NAMIWALKS 5k. Go sponsor, my minions (you're my minions, right?)! NAMI | NAMIWALKS

NAMI is awesome, they are the National Alliance for Mental Illness working on advocacy for the mentally ill and working to destigmatize mental illness to encourage more people who need help to be able to access it.

I walked for them last year in Chicago, and it was great.

Depression Strikes Again

Image via Wikipedia

It's the mummy of Ramses II.  Not really applicable, I just wanted to put  it in

I had another bad episode of depression crop up last weekend, which is why the blog has been so quiet for over a week. 
I'm feeling much better now emotionally, though the weather has been hard on me physically.  Almost every day has gotten me a weather warning for either arthritis or migraine.  Buhh.

We're still watching events in Egypt unfold and hoping for the best for Egyptians.

On a lighter note, I've been sleeping in more the past week (into the afternoon, frequently) and it seems as though every time I stagger out of bed, often the first thing I find out is that someone has been deposed or protests have cropped up somewhere new. 

Seesaw

Image via WikipediaI feel as though I've been on one lately. 
My depression has reared it's ugly and unwelcome head again, which has left me weepy and distraught alternating with okay and fairly cheery the past few days.  Bleh.
And the past month has been a weird span of increased fatigue and apathy and migraines interspersed with some okay and even good moments.  Bleh, again.  And all that has meant I've been less consistent with exercise, which has all of me creakier and more painful which doesn't help matters.

The freezing cold also doesn't help.  It's a major act of willpower to take my socks and slippers off to do yoga with the Wii Fit.  Brrrrrrrr.  Add in trying to do anything too motion-intensive or that involves inverting my head when I have a migraine and blech.  Although I guess my feet would be warmer if I barfed on them.

I'm also having a bit of trouble communicating with my therapist, which is something I hope to resolve at our next appointment, first via discussion or, if necessary, requesting to see someone else.  I'm nervous about asserting myself in this context, but resolved to do it anyway.  Failing to address the issue isn't going to do anyone any favors. 
Wish me luck. 

In better news, my new reading glasses seem to be helping immensely with some of my neck pain now that I'm no longer straining forward to read.  There's still some soreness, I think from my neck and shoulders readjusting to a better position, but it's not nearly as awful and I haven't had as much neck pain with my migraines. 

I also got a new chair today to use for crafting.  I'm hoping a comfortable, supportive chair will make it easier and therefore more likely for me to go play with polymer clay and my sewing machine. 

And I bought a book holder so it's easier for me to read when my arthritis flares up in my hands.

I am sincerely hoping a recent med change will kick in soon regarding the depression and the migraines.  I hate this crap, especially feeling worthless and awful and like some sissy drama queen and then feeling awful for feeling like that, and... 
I'm still not entirely convinced drilling a hole in my head wouldn't help.   Or a knitting needle up the nose?

Turns out I'm more twisted than anyone realized

Image via WikipediaI think I've mentioned before that I have scoliosis.  I've never really thought much of it - it was diagnosed at my college student health center when I was 18 or 19 and went in because I was having pretty horrific sciatica-type pain.  They told me it wasn't anything to really worry about and sent me on my way with some PT exercises that I did for a while and then promptly forgot about.
I've had trouble sitting up without a pillow or something for back support without pain in my lower back or burning pain in my side muscles for years and thought it was just because my muscles were weak.

It didn't really come up again until I had my first MRI and one of the douchetastic duo was all "whoa, you have scoliosis!"  and I sort of nodded and asked if it mattered.  Other than making my lumbar puncture a bit more challenging, it didn't seem to.

Back at the beginning of November, I met my new PCP (my previous PCP has switched clinic locations to somewhere harder for me to get to, so I wound up switching).  I had been having a fair bit of sciatica-like pain for months and my physical therapist suggested I ask about having some imaging done.  As it turns out, the many MRIs I've had all focused on my brain and spine as far as my thoracic vertebrae, but not really lower.  So I went and had an x-ray of my ass.

My PCP called and let me know that the radiology report noted the scoliosis and some narrowing in the spinal canal.  For the time being, keeping up with my PT and using NSAIDS and heat or cold are the best thing for it.  Fine with me.


I mentioned it to my neurologist when I saw her last week, just to be sure she took a peek.  She suspects the scoliosis is contributing to some of the pain/tension in my neck that goes along with my migraines.  Again, were mostly just keeping an eye on it - if I start having really severe pain or other issues suggesting more impingement of nerves or something we'll take another look.  Fine with me.

I saw my rheumatologist today and also mentioned the x-ray to him.  I love my rheumatologist - he's crotchety and snarky, but not with his patients, just in general.  He looks at it muttering about "let's see what the radiologist said, not that I care what they said, but let's see if they actually caught anything they should have..."
Turns out some of the facet joints in my lumbar vertebrae are rubbing against each other because of the scoliosis.  And my sacroilliac is tilted a bit weird so on one side it's not quite lined up properly with the sacrum and on the other side, it's rubbing up against the sacrum.  Fun.  So, that's something to keep an eye on, as there is some degeneration of the osteoarthritis kind from the bone rubbing on bone.

My scoliosis is a bit more pronounced than I had realized too as I'd never gotten a really good look at my x-rays.  There's not only a curve around L2/L3, but it twists a bit as well.  All that tugging and junk on my muscles is of course going to give me back pain and muscle spasms.
That, of course, led me to ask if the muscle spasms could partially explain my involuntary movements.  My rheumy thinks it's a possibility.  Shame no one thought to look into my reports of back pain and history of scoliosis 2 years ago. 

For the time being, I'm to keep up with my PT to keep my muscles strong, use moist heat on the back, and that's mostly it.  Which is fine.  I'm just glad there isn't any sign of inflammation or inflammatory arthritis through that area.

He also noticed that my hands and fingers are getting pretty puffy.  I've been having more hand pain lately.  So that's to be kept an eye on too.  We're checking my ANA and thyroid stuff again to be sure my thyroid levels are still behaving after that weird fluctuation in October.  And I go back in February to see how the arthritis-y stuff is doing in depths of winter.  I've had a sore throat non-stop since October and the itchy rash of doom on/above my elbows, so maybe the blood work will show why.


I've been having good fun playing with the interactive spinal anatomy things on the University of Toronto website and making Tom help me figure out what parts we talked about.  It is super geeky fun.  I do worry a bit that I'm preoccupied with medical stuff, but I tend to look stuff up and read more out of curiosity and a "whoa, why/how does that happen?" than because I think I'll find *the answer* to my health issues. 

I also had a psych follow-up today.  It went well, as usual.  We're upping my med doses hoping to prevent migraines and to hopefully prevent a repeat of my mini-breakdown with suicidal ideation a few weeks ago.  That would be nice.  I'm hoping it will help my memory too, which has gone to total crap lately.  I recently started the sequel to a book I read in October and have been pretty lost.  Derp.  They've also said they totally support my application for disability and will help however they can.  It's really, really great to get that support and not feel as though I'm lazy or a leech or something.

In other news, I got my rejection from Social Security before I even finished my initial application.  According to them, I don't have enough credits.  I've gotten in touch with a lawyer.  There is some inexplicable weirdness for 2 years where it appears my employer failed to deduct or pay Social Security.  The loss of those 2 years means I don't have enough credits for SSDI.  I started the correction process in early November, but it apparently hasn't gone through all the way.  Anyway, the lawyer is looking into it.  I'm really, really hoping  the stupid mistake doesn't cost me my SSDI benefits.  The lawyer thinks I have a pretty good case otherwise, between my list of diagnoses, my functional symptoms, etc.  And as he told me - even if someone wants to say your symptoms are "in your head" it doesn't make them less real or lessen their impact on your life and ability to maintain gainful employment.  And my little part-time job shouldn't create a problem as my earnings are well under the allowed amount per month. 
I'm really hoping the earnings record crap can be resolved easily.  All the paperwork and figuring things out and blah wears me out a lot.  A *whole* lot.

Limits and How They Suck

PoppySeed the Pomeranian, despite being a wonderful, cuddly, delightful little ball of fluff did not work out for his trial.
Unfortunately, I had over-estimated my ability to cope with a younger dog - he's about a year old, plus a jealous Oreo.
So, I'm upset in two ways - one because PoppySeed was a love and I really, really wish we could have kept him.  And two, because I've just had a fairly harsh reminder of where my limits are and that they are closer than I thought.
This follows on the heels of a mini-breakdown the last week of November when I had to call off from work and spend a few days in bed because I was physically and mentally exhausted to the point of collapse and slight mental health crisis. 
It used to be that I could work around my crashes.  I knew they were inevitable, but through the last years of college and through most of grad school I could push past the collapse point so long as I could crash at the end of a few days or a week.  I didn't even really realize then that that isn't exactly normal.
I no longer get to work around or stave off the crash or flare or whatever the hell you call it when it feels like I have the flu, can barely move (except for involuntary movements), need to sleep or stay lying down, and burst into tears with a side of ramped up anxiety and suicidal ideation.  It just hits.  If I'm lucky I notice the warning signs and am able to do self-care.  If not, I feel worse for longer.
I am at least grateful that I can take steps to mitigate the crash if I can just rest for a week (sometimes more).  And I'm even more grateful that most of the people around me have come to understand and accept that and don't seem to think it makes me lazy or worthless.

Anyway, I'll miss the adorable little fluffy monster, PoppySeed.  I know he'll find a happy forever-home.  For now, it will just be Oreo and me around the house during the day.

The Joys of Bureacracy and Confusion

So after agonizing over it and talking about it and thinking about it and, and, and...  I've finally started the application process for Social Security Disability (hereafter SSDI). 
Some of you may be wondering why the hell I've done this now as I got a job in August.  While the job is nice, it is also exhausting to me.  I cannot work it full time.  I can't even work two days in a row without serious repercussions like needing to spend most of the next day or two in bed.  And this is not a difficult job.  At all.  My mental health has taken a distinct turn for the worse (not to crisis levels yet, but treading uncomfortably close) and I think it not unreasonable to suppose that some of it is because I can't quite cope with the "stress" of working.  While I can, and possibly will, adjust meds to see if there's an improvement, I have noticed that the weeks when I'm not scheduled so frequently I seem  to be less inclined to anxiety/depression crap.

Thus, I've had another wake-up call in terms of my limits.  I am not, by the Social Security Administration's guidelines "gainfully employed."  I'm not sure how much longer I can remain even sub-gainfully employed.  I've already had to ask to be excused filling-in for certain shifts because they are seriously detrimental to my health.  Anyway, I hope to keep working at least a shift or two a week for as long as possible.  But I also recognize that I don't know how long that will be. And as I've said before, I have to plan based on how I feel *now* not how I *might* feel in the future.  The way I feel now is that working just 16 hours a week at a sedentary, uncomplicated, quiet job is nearly overwhelming.  Ideally, in the future, I might be able to take advantage of the Ticket to Work program or successfully work from home in some way, or be healthy enough to work a 40 hour week.  Or hit the lottery.  Or something.  But now, not so much.

The initial step in the process was calling up Social Security and trying to fix my income statements for a few years when, for some reason, they have me as having received no income.  While I was never making a hell of a lot of money (because I had been in school full-time between the ages of 5 and 27), I *was* making some.  And paying taxes on it.  Dammit.  Anyway, they were very nice and helpful and hopefully that's fixed.

SSDI is in part based on work credits.  For every x amount of $ you make you get a credit.  I cannot, despite valiant effort, figure out if I have enough credits.  Some calculators say yes, others say no, there are weird exceptions to the rules based on age.  Buhhh.  Also, I resent the term "work credits" - I was "working" my ass off, I just wasn't getting paid for a lot of it.

So, I started my application.  Teh confused.  I haz it.  I think that may be the first test of disability.  If you are capable of filling everything out on your own correctly you clearly are not disabled.  So, I've let it sit for the past few days and started looking for assistance. 

The first agency (Allsup) would not take my case because I'm working, even though it's usually under 20 hours per week and my monthly income is well under the SSA cut-off.  If I quit my job they would review my case.  So, hell with that.

An old friend who happens to be a lawyer saw me moaning about the above on Twitter or Facebook or somewhere and sent me some helpful links.  So, I've been researching law firms.  I already have one scheduled to call me (tomorrow, hopefully) to discuss details, etc.
Here's the things I plan to ask about.  If anyone has helpful suggestions, they'll be well appreciated.

• Fees - by law they're supposed to only be able to claim a certain % of the back-pay or a set $ amount and only if they win.  No win, no money.  I want to be sure they know this or else I will run away.
• What about the work credit situation?
• Should I continue the application I started on-line?  If so, precisely what information should I include and how?
• How much and what am I expected to do?
• What is their success rate?
• If they won't take my case can they refer me to someone who might be able to?
• If they won't take my case is it because they know it won't succeed or is it just because it will be too challenging?

Hashimoto keeps getting me down

Image via WikipediaI had a routine Rheumatology follow-up two weeks ago and they did their standard labs to see what's going on with me in terms of autoimmune suck.
Looks like the Plaquenil has done okay in bringing down some inflammatory markers, but apparently my thyroid is being a bitch again.  Or my immune system is being a bitch to my thyroid.  Yay, Hashimoto's thyroiditis
So, my TSH is high and my thyroid peroxidase is also high which means we probably need to up my dose of replacement thyroid hormone so my body will quit being all "ahhh! give me hormones!" and my immune system will quit being all "omnomnom tasty thyroid hormone."
I went in for more labs Friday and should get results this week along with some idea of how much we need to up my Synthroid.
I have to wonder how long this has been going on.  I have been more tired the past few weeks/month and this week has been awful - I had to call in to work last night because there was just no way I had the energy to go.  My job involves sitting there and occasionally interacting with people.  I was too freakin' tired to do that!
Well and I had a migraine.  But most of yesterday involved sleeping, waking up a bit and trying to read, falling back asleep, getting up for food or medicine and winding up winded just from the effort of moving.  Not cool.
Anyway, I'm wondering if stuff I attributed to allergies, migraines, and the weather were in part signs that I was getting hypothyroid again.  We'll see if daily sore throat, multiple migraines a week, random rashes, and extra exhaustion and brain fog go away with more Synthroid so maybe the next time this happens I'll be more likely to notice it.
I managed to get up the energy to shower today and I've been crocheting and watching movies.  I'm supposed to work tomorrow night and by Flying Spaghetti Monster I will make that freakin' shift!

Single Dad Laughing: The disease called "Perfection"

Single Dad Laughing: The disease called "Perfection": "- Sent using Google Toolbar"
Very much worth a read, as is the follow-up at the bottom.
Trying to be perfect, knowing I was perceived by some people as perfect, not wanting or being able to admit that I was not and didn't want to be perfect has been a major part of pressure and pain in my life. Learning to stop trying to be perfect or to expect other people to be perfect is the most useful thing I've ever done. It's a ongoing lesson and a hard one. But it's essential.

Time flies and junk

Image via WikipediaI just realized it's been a week since my last post.
As expected, the NAMI walk did wear me out quite a bit. I spent most of Monday curled up in bed with Oreo and a book and even had a midday nap.
Tuesday was physical therapy which was harder than usual for me (still tired). And the trigger point injections were wearing off by then. My therapist was trying to do some range of motion and traction stuff with my neck and I just could not relax. The constant tension is a big issue for me in terms of posture and pain and migraine.
I forgot to mention last week that I had a chance to try out a recumbent tricycle last Saturday.  It was absolutely amazing.  I had a regular bicycle several years ago with the idea of using it to commute to campus.  I didn't want to admit it at the time, but I was afraid every time I rode it.  I didn't feel balanced or secure and I really wasn't comfortable turning and moving to look behind me.  So I quit riding for some time.  I thought maybe it was more the bike than me, so in 2008 Tom got a beautiful vintage Schwinn from a friend and we put rearview mirrors and wire panniers on it.  I rode it twice, terrified both times that I was falling/going to fall.  By the end of the second ride I was also in pain and exhausted.  We eventually sold it.  I occasionally look back on it with wistful regret - I love the sensation of riding, I was really hoping to get into touring (Dervla Murphy is a hero of mine) and riding used to be fun.
When I started physical therapy again, my therapist started having me warm up using their recumbent exercise bike. And it dawned on me that a recumbent bike or even better a trike might be something I could try to start riding again.
There was a sports fair nearby last weekend and a local bike store that sells adaptive bicycles had several bikes out. I tried an upright trike and it was okay, but not wonderful. I did feel much, much safer and more confident though. Then I tried the recumbent. It was amazing! Pedaling felt super efficient and wonderful and stretchy. My arms and hands were in a neutral position so there was no pain or tingling or numbness. I felt absolutely secure and far more confident of my ability to steer and be aware of things around me because I wasn't devoting so much attention to not falling or being afraid of falling. It felt a little like being in a go-cart. The only major problem was how low to the ground it was - which made it a challenge for me to get in and out of and made it a bit less visible. Nevertheless, I really fell in love with it. And there are models that are elevated a bit more to roughly the same eye level as a passenger car.
Unfortunately, they're fairly expensive, especially on our budget. But we're hoping to save up and maybe find something used or eventually squirrel away enough money. We're also hoping to go out to the bike shop one day to see if we can arrange a longer trail-ride for me to get a better idea of how I like it for longer than the 1/4 block or so I could ride at the sports fair.
I'm also planning on getting a pedal exerciser to work with while I'm on the couch or floor to build up some stamina in my legs and get some good stretching in.
In other news, the ArtFire opt-in drive got enough subscribers, including me, which means I will have an ArtFire Pro account for $5.95/month. I opt-ed in as a sort of "if it works, then I'll really buckle down and open shop." And it did. So, come November I hope to have at least a little something up and running. October is going to be entirely too busy for me to do it then - we're going to see my parents and my grandmother.
And, in less happy news, my Nana has esophageal cancer. She fortunately is not in any pain, but she is still having trouble eating despite having a stent put in to help expand the esophagus. Given her age and relative health she and her doctors have decided to forgo treatment and let nature take its course. I support her fully in this decision, and totally understand her desire to be as comfortable as possible in the time remaining rather than go through chemo or radiation and the side-effects related to them. It does mean, though, that it is just a matter of time until we say goodbye. I am, though, very grateful to have a bit of warning and the chance to prepare and say goodbye. I've been trying to talk to her at least once a week and she sounds fairly good. And, like I said, Tom and I are going to visit her mid-way through our trip out to see my parents.

Just What Is Progress, Anyway?

Image by brianjmatis via FlickrI had a follow-up appointment with my neurologist this afternoon.  She is blown away by how much better my walking is now than in was a few months ago.  And it dawned on me - she's right.  And that's good.
Now let me try to explain why that's a bit of an epiphany for me.
For so long, I was trying so hard to convince doctors and myself and other people that something was wrong that hearing "that's better" or "well, that doesn't seem to be happening now" or "that's not too bad" was infuriating. Intended or not those reactions were often tinged with more than a hint of "and you're wasting my time" or "there's nothing wrong." And so I've been resistant to "you're looking better" because I had started just automatically assuming the stubborn mindset of "no, jackass, there is something wrong and just because I happen to be having a good day today does not mean that every day is like this one.
I've also started to realize that while some of my problems are interrelated or come as a set, others don't. I think it's taken me a little by surprise that my walking has improved because other things haven't. I don't have a lot more energy or strength or stamina. I still need my cane. But I can walk fairly well without the cane without weaving all over or tripping over my own feet or starting/stopping or having my lower back and pelvis moving all over the place.
And I do feel better between my daily Wii Fit and weekly PT. Not "cured" not "100%" but better. Baby steps. And so I still balance between frustration and acceptance on a daily basis. The fatigue and weakness and general ick are things that I'm increasingly thinking I'll just have to live with. I need to not lose sight of the progress I make on the things I can actually make progress on like walking and basic fitness and (hopefully) migraines.
Today's appointment also wound up with me getting novacaine injections into some trigger points in my neck and shoulders in the hope that will help my migraines.
According to my PT, because my shoulders are usually rounded and I carry my head too far forward, I'm overstraining the muscles in my neck and shoulders, which is not helping me in general, but can definitely be contributing to my migraines.  So, we're going to continue working on that.  Suggestions are welcome - I would be thrilled to get rid of the permanent aching knots in my neck and shoulders, especially the ones that make it feel like my shoulder is going to wind up in my ear during the worst of my migraines.
We're also upping the does of my preventative med to see if we can get it to work. I'll be very happy if I can quit with the 4 or 5 migraines a week. They're bad enough when they suck up two or three days a month but most of a week is just too much.

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with are: Chronic Fatigue Syndrome, Undifferentiated Connective Tissue Disease, Functional Movement Disorder, Sleep Apnea, Delayed Sleep Phase Disorder, Migraine, Mitral Valve Prolapse, Depression, Hashimoto's Thyroiditis
2. I was diagnosed with it in the year: Heh - a lot of the diagnoses came in 2008/9; some like the MVP well before that
3. But I had symptoms since:  my mid-to-late teens, so about 15 years
4. The biggest adjustment I’ve had to make is:  No longer being able to bounce back from illness or overwork or push past exhaustion or pain
5. Most people assume:  That I'm "just tired," or that I only became ill very recently and don't realize I was coping with symptoms increasing in number and frequency over a long period of time.
6. The hardest part about mornings are:  Getting going and trying to figure out how much energy I'll have for the day and how best to use it.
7. My favorite medical TV show is:  MASH
8. A gadget I couldn’t live without is:  My cane.  Seriously, my cane means freedom and independence for me even on the days when my depth perception is shot and I have vertigo or my legs don't seem to want to function properly.
9. The hardest part about nights are:  Getting to sleep, especially when I'm in too much pain to ignore it.
10. Each day I take __ pills daily (No comments, please) 9, assuming I don't take any "as needed" meds for pain or allergies, like Aleve, ibuprofen, Klonopin, Benadryl, etc.  It's usually more than 9.
11. Regarding alternative treatments I:  I do careful research and look for clinical studies and other information about certain treatments, in particular herbs and supplements, make sure there isn't a risk of interaction with any existing meds or illness, check with the appropriate doctor, and give it a try.  My basic philosophy is that if it isn't hurting you in some way or interfering with evidence-based medical treatment and it makes you feel better, that's all to the good.
12. If I had to choose between an invisible illness or visible I would choose: I don't think I can make that choice.
13. Regarding working and career:  I chose to give up my career as an Egyptologist because I simply couldn't manage finishing my PhD and then go on to try for a faculty position or do field work in my current condition and because I didn't think I could find an adequate balance of stress and health.  But I have found ways to keep busy.  I'm working part-time in a relatively low-stress position.  I'm also slowly working on developing a home-based craft business.  My entire perspective has shifted from living to work to working to live (cliched though that may sound).
14. People would be surprised to know:   I think it depends on the person and how they think they know me.  Some people would be surprised to know that I've accepted the reality of my illness and am, for the most part happy in spite of it all.  Other people would be surprised to know that there are days when I sob over not being able to lift a milk jug because it reminds me of all I can't or find hard to do.  Anyone who really knows me though, probably wouldn't be surprised at all to know that after the sobbing, I pull myself together and figure out a way to get the milk I wanted and then laugh at myself for getting all emo.
I doubt many people know or guessed that there were days when I felt so alone, so agonized, so guilty, so much a burden, and so hopeless that I wanted to die, because that would somehow be easier for me and everyone around me.
I don't know how many people know that when we were waiting for my Huntington's Disease test to come back (it was negative) my first thought was how horrible it would be for my husband to watch me decline and die and my second thought was wondering, if the test came back positive, what that would mean for my parents, half-brothers, and nephews and niece.
I don't know if anyone knows that there are days when I feel like a lazy, melodramatic, wimpy fraud.
15. The hardest thing to accept about my new reality has been:  I have limits and I cannot predict how I'll feel from day to day.  That some people just will not believe me or come even close to understanding what my life is like now.
16. Something I never thought I could do with my illness that I did was:  Go out by myself further than just to doctor's appointments
17. The commercials about my illness:  There are commercials?  I don't have regular TV anymore - have they finally opened Cripples R Us?
18. Something I really miss doing since I was diagnosed is:  Running, riding a bike, driving, digging
19. It was really hard to have to give up:  Driving, but I don't feel safe and I can't bring myself to put other people at risk if my attention wanders or I have a weird muscle spasm or my depth perception is totally off.
20. A new hobby I have taken up since my diagnosis is:  Crochet, Knitting, Sewing, Polymer Clay
21. If I could have one day of feeling normal again I would:  Dance
22. My illness has taught me:  Patience, the value of friendship, the value of family, ingenuity
23. Want to know a secret? One thing people say that gets under my skin is:  I can't limit this to just one.  "Oh, yeah, I'm tired too.  We're all tired."  And "You should get out more."  And "It's all in your head."  And "If you'd just try harder."  And "But you're so young."  And "But you don't look sick/in pain/tired."  And "Have they figured out what's wrong (and fixed it) yet?"
24. But I love it when people:  Ask if I need help, anticipate that I may not be able to handle certain things, genuinely try to understand what my life and illness are like now.
25. My favorite motto, scripture, quote that gets me through tough times is:  You're never given a burden heavier than you can carry, no matter how much it may seem otherwise.
26. When someone is diagnosed I’d like to tell them:  What you feel is real, your health is real, and your needs are real.  Don't let anyone tell you otherwise.  Learn to set limits and remember that because so many of your symptoms are invisible, you have to tell people how you feel.  They aren't mind-readers.  It will help you and the people around you adapt so much faster is they really know what's going on.  Telling people "I'm in pain" or "I don't think I can do that" is not the same as complaining.  It's being proactive.
Also, give serious consideration to exploring mental health counseling or therapy.  The right therapist and program can help immensely with coming to terms with your health, coping with feelings of grief and guilt, and learning how to relate to the people around you.  It doesn't mean you're "crazy" or that your illness is "all in your head" - it means that you're taking all the measures you can to keep yourself as healthy as possible and to learn as many coping skills as possible.
27. Something that has surprised me about living with an illness is:  How quickly I've learned to cope.
28. The nicest thing someone did for me when I wasn’t feeling well was:  Being there and supportive and undemanding
29. I’m involved with Invisible Illness Week because:  I think it's important to add my voice and my experience to increase awareness of "invisible" illnesses - their existence and the experience of living them.
30. The fact that you read this list makes me feel:  Grateful.

Reality, "Negativity," and Acceptance - A repost from 2009 in honor of Invisible Disability Awareness Week

This post originally appeared here in April of 2009.  Over a year later, I find I have a lot of the same feelings and experiences and wanted to share this for Invisible Illness Awareness Week



Being or becoming disabled requires a lot of adjustments. Some of these are obvious – changes in lifestyle, in jobs, in relationships, in daily activities. It requires a pretty major mental adjustment, too, one that often isn't obvious, or at least wasn't for me. My illness has been gradual in some ways – increasing fatigue and weakness over the span of years – and quite rapid in others – the onset of movement disorders, major increases in fatigue, etc. At first, I went into this with the idea that my doctors would figure out what the problem was, fix it, or at least figure out a way for me to compensate, and I would go on my merry way. Over the past year, it became pretty clear that that isn't going to happen. Realizing that not only is it extraordinarily unlikely that I'm going to wake up one day and be fine, but that my whole life now needed to change was, to put it mildly, intense. Accepting it was even harder.
Part of the issue is that I think we are taught to approach all sickness as something to be defeated or gotten over. This isn't necessarily a bad thing – there seems to evidence that mindset plays an enormous role in recovery from thing like cancer. A lot of us, and I definitely was (and to an extent, still am) one of these people, are also taught to “walk it off” or “push past it” and to hide or deny our symptoms. Again, this isn't necessarily a bad thing – fear of embarrassment, concern over keeping a job, avoiding making others uncomfortable, etc., are all good reasons to try to hide symptoms or deny that there is a problem. Unfortunately, it can also be very counterproductive.
I finally accepted that I am disabled, am likely to be so for the rest of my life, and that there is a chance my condition may decline a few months ago. I found it enormously liberating. Instead of feeling like my entire life was on hold until I was “well,” of being afraid to undertake new projects, of not knowing what I was going to do next, I could finally start looking ahead. I now plan based on how I feel now, not how I felt a year ago or 5 years ago, or how I wish I felt. That means that I have to set the bar quite a bit lower, but it also means that I have realistic goals and that I'm not constantly frustrated and depressed because I can't do x, y, or z. I've also come to see the silver-lining in getting sick – I've come to appreciate my family and friends, most especially my husband, even more, I'm under far less stress than I was as a graduate student, I'm less likely to feel guilty for spending time on things that I enjoy (I'm still working on this one), I'm more in touch with my creativity. In short, I'm much happier. I'd like to still be able to walk several miles without even breaking a sweat, or work full-out on a research paper for hours on end without getting utterly lost, but I realize that I can't and I've stopped feeling guilty and bad about it. Instead, I try for a few blocks a day and a few easy paragraphs on the blog. I won't go so far as to say the trade was worth it, but it could be much, much worse. The majority of my various doctors and specialists agree that my new mindset is much healthier and better for me and realistic. 
The downside to this can be in relationships with other people. Most of my family and friends also agree that accepting my disability and working forward from it as good things and they've been wonderful about helping me cope. Unfortunately, there are a few people who don't see it that way. Like I discussed a little bit above, I think many people view illness or disability as something to be overcome and/or denied. So, for these people, I think that my acceptance looks like defeat or negativity. Some people have been very direct about saying this and I prefer that, because it's easier to have a discussion and explain how I think acceptance is very different from negativity or defeat. With other people, it can be much harder as it tends to be clear only from their actions or implied in their words that they feel it's negativity. I suspect being unfamiliar with the details of my situation probably contributes as well – on a good day I look like a relatively attractive, healthy young woman who happens to have a cane. Pain doesn't advertise, I've learned to compensate for or hide my tremors unless I'm having a particularly bad day, and my balance problems are also fairly hard for others to notice.   My fairly direct manner may also contribute - if I'm having a bad day, I say so.  If my hands are shaking badly, I say so.  How is anyone going to know that I need help going down those stairs or opening that bottle if I don't say so?  And I tend to crack jokes about it too.  The "negativity reaction"  is something that still bothers me, however, even though I know I probably shouldn't let it.   I'm tempted at times to snap at people "I'm not freakin' negative, you jackass, I'm a realist, and that's different.  Stagger a mile in my shoes!"  Obviously that would be counterproductive.  Instead I fume a bit and then go find something distracting.
I'm sure I'm not the only one with this problem, but I wanted to put it out there for others to see, those with and without disabilities. Obviously, not everyone approaches their health in the same way and what has worked for me may not work for other people, but I think keeping these things in mind can be helpful in basic, everyday interactions for everyone. I hope anyone with any thoughts will feel free to post here if they'd like.

Buhhhhh

Image via WikipediaSo even after 6 weeks on nortriptyline my migraines don't seem to be improving.  I've had 4 this week and no less than 2 each week since I started the nortriptyline.  Some of them I've been able to cope with.  Others have been really awful.
This has led to me slacking off on doing Wii and my PT exercises at home.  Not good.  Working on that.

I did, however, discover that if I really feel like I shouldn't do the Wii (as opposed to just being a bit lazy) I probably shouldn't do the Wii.  I had a migraine Friday but though "oh, well, if I just do some of the standing yoga poses so I'm not moving too much or lowering my head (that makes stuff hurt worse) it'll be fine and maybe I won't feel so stiff and sore."  I did the Warrior pose, the Palm Tree, and the Chair.  Half-way through the Warrior pose I started to sweat and shake, with the Palm Tree is was practically vibrating and started getting nauseous, and the Chair I nearly fell over and actually soaked through my shirt with sweat in a few places.  This was a 6 minute long workout.  I usually do 15 minutes and don't break a sweat even if it's a bit warm.  So,  yeah.



My involuntary movements have made a come-back as well, usually on the same day as a migraine.  Fun times.  I've been really, really stiff lately too - mostly muscles rather than joints from right after I get out of bed.  Yoga with the Wii helps a bit, so does a warm shower, but if I stay in the same spot too long, my back stiffens up.
My shoulders and neck are permanently tense again which is part of the migraine feedback loop.  And my sciatica or whatever the hell it is that makes it feel like someone is pinching my ass from the inside or sending laser beams from my ass down to my heel is flaring  up.

Anyway, I have a neuro appointment this coming Friday.  We'll see what else we can do with the migraines, I plan to ask about a specialist.  I've done some reading about vertiginous migraine which is sort of interesting and might help explain some of my balance problems.  Or not.  Whatever. I just want to stop having the damn things so often.  I feel like crap when I have them and can't get much of anything done, then I have the hangover, which sometimes lasts a whole day or more and then it seems like by the time I've recovered from one, another one shows up.  If I get too active too soon it can trigger another one (like last week when I had to hobble-run for a bus that didn't follow the proper route, missed it, and then had to haul ass for 2 blocks to make it to an appointment without being late; within an hour I had an aura coming on and within an hour of the aura the pain hit.)

I've also started having the occasional one on my left side.  In the past they were always on the right and even now are usually on the right.  So, maybe a specialist, maybe we'll up the dose of nortriptyline or try something else.  I might also see if it's worthwhile to have another sleep study to see if my apnea has gotten worse and is maybe contributing. 


The image is of cortical spreading depression, which is one of the models for explaining visual aura in migraines.

National Alliance on Mental Illness Chicago Walk

Tom and I and some friends will be walking in the National Alliance on Mental Illness walk in Chicago on September 19. This is an important cause for me in particular for a lot of reasons.
One is that regular therapy over the past few years has probably been one of the most, if not the most useful treatment I've received in terms of learning to cope with becoming disabled, having chronic health conditions, dealing with the unknown and unexpected, etc., etc. I'm deeply appreciative of all the professionals who have helped me and continue to help me.

Another is that I am all too aware of the stigma associated with mental illness. I understand it to a certain degree but I don't like it. I like it even less now that if affects me personally. I want to walk to show solidarity with others who have or have had mental illnesses of any kind.

A third is that the state of mental health care, particularly access to mental health care is in many ways absolutely pitiful. Public funding has been cut in many circumstances. Some of the people who most desperately need help and support whether it be crisis intervention or long term care often have little or no access to the help they need. I have been remarkably lucky in that our health insurance covers mental health care at all and that our coverage recently removed the yearly cap on office visits. Others are not so lucky.


Here is the link to my personal walker page: http://www.nami.org/namiwalks10/GCH/shovelingferret
And here's the link for our team page: http://www.nami.org/namiwalks10/GCH/jamesgang

Any support, whether it be moral support, sponsorship in any amount, or joining our team if you're in the Chicago area will be immensely appreciated, not only by me but by all the other people your donation will help.

I'm hoping to figure out a way to stick a permanent link/gauge over on my sidebar as well...