Books I read in 2011

My favourite 5 books of the year are starred, however, none of them absolutely wowed me.

- Cutting for Stone was probably the best novel I read

- If you like fantasy, I really enjoyed the Game of Thrones series

- If you like youth fiction - Henery Neff's series is quite well done, especially if you get past the first book

If you just need a good laugh, Letters From a Nut by Ted Nancy had me howling.

What was your favourite book of the year?

*1. The Calligrapher's Daughter - Eugenia Kim

*2. The Story of Edgar Sawtelle - David Wroblewski

*3. Cutting for Stone - Abraham Verghese

4. Ape House - Sara Greun

5. The Raven's Gift - Don Rearden

6. A Long Way Gone: Memoirs of a boy soldier - Ishmael Baeh

7. City of Bones - Cassandra Clare

8. The Wise Man's Fear - Patrick Rothfus

9 The Little Giant of Aberdeen County - Tiffany Baker

10. The Art of Racing in the Rain - Garth Stein

11. Nostradamus - Douglas Coupland

12. Letters from a Nut - Ted Nancy

13. Half Broke Horses - Jeannette Wells

*14. The Help - Kathryn Stockett

15. The Hound of Rowan - Henery Neff

16 HP and the Order of the Phoenix

17. HP and the Half Blood Prince

18. HP and the Deathly Hallows

19. The Girl She Used to Be - David Cristofano

20. The Second Siege - Henery Neff

21. The Fiend and the Forge - Henery Neff

22. Hotel at the Corner of Bitter and Sweet - Jamie Ford

23. HP and the Chamber of secrets

24. Irma Voth - Miriam Toews

25. Pendragon - D. J. Machale

*26. Game of Thrones - George R. R. Martin

27. Thirteenth Child: Frontier Magic - Patricia Wrede

28. Clash of Kings - George R. R. Martin

29. Across the Great Divide - Patricia Wrede

30. Little Princes - Conor Grennan

31. A Storm of Swords - G. Martin

32. HP and the Prisoner of Azkaban

33. A Feast of Crows - G. Martin

34. HP and the Goblet of Fire - Rowling

35. The Elegance of the Hedgehog - Muriel Barbery

36. Magor Pettigrew's Last Stand - Helen Simonson

37. Julie and the Wolves - Jean Craighead George

Have a Happy, Peaceful Holiday!!

I just wanted to take a moment to wish all my friends and fellow bloggers who stop by here - Happy Holidays.

Whatever holidays you celebrate during this next week or two, I hope you have a happy time.

I appreciate those who stop by here to read, offer support, advice and/or friendship. So best of the season to all of you!

I am happy to say that I am nausea free after 5 days of barely eating and a case of stomach flu. My stomach is still not quite right (I will spare the details) and I'm incredibly weak and tired, but very thankful that I am not nauseous.

WHAM!!!!!

I took a risk and attended a reunion of friends three hours south of here in Minnesota over the weekend. It was so nice to see these folks again. The tough part was dealing with the M.E. fatigue/weakness/fluiness, but we had a house rented where I had a bed I could retreat to which helped.

Before I got M.E./CFS 9 years ago, me and some women friends planned a fund-raising expedition that would take us across much of sub-arctic Canada by ski and dog team. We planned the whole thing including raising many of the sled dogs from pups. Unfortunately part way through the planning years I came down with a severe mono infection and as you know, failed to recover....

However, I am still good friends with most the woman and it was so nice to see them again (as well as two children that have come along in the years since). The third and last day of the visit was a let down as 4 people came down with stomach flu. I thought I had escaped until yesterday morning. I won't go into the details.

36 hours later I'm still quite ill, although I am keeping down a little fluid now. On top of it, I believe I have my post visit crash setting in (it's really hard to tell stomach virus weakness and fatigue from the M.E. sort, however, as of this morning my breathing is painful and achy which is a classic M.E. crash).

My NP called this morning to let me know about my blood work from last week. My ANA and rheumatoid factor were normal, however, interestingly I do have a low B12 level, low Ferritin (down to 7 now but haemoglobin's OK), as well as a low WBC (I think she said 3.4) with mild neutropenia (maybe 1.2?). I have a choice of supplementing the B12 with pills or getting shots and I'm going to get the shots, despite the fact that it might mean an extra outing once a month. I've heard such good things about them.

So that's what's happening here. Despite the stomach virus and the crash, I'm still glad I saw my friends. I'm hoping that I pick up a little before Christmas, though. I'm also hoping that fighting the stomach virus doesn't send me back to pre-Dec. levels of M.E.

Appointment time

It's been three months since I've had any kind of Dr. appointment, despite the fact I've experienced my worst relapse since 2004 (which I've recently been pulling out of - yay).

I had an appointment with my NP (nurse practitioner) today. She's lovely and somewhat familiar with M.E. (she has a family member with it) although she's definitely not up on all the recent research or anything.

I vacillate between wanting to seek out medical help and new treatments and wanting to avoid doctors altogether as they've never been able to help in the past, even if they weren't dismissive. I love my specialist but have to travel far to see her and I've been too sick for travel lately.

They are trying to set up a tele health (like a televised health appointment) between my NP, my specialist, and me, but they've been trying to set it up for three months and still don't have one set, so I'm not holding my breath.

One thing I like about my NP is she treats me like an intelligent woman. Today, I actually had a hand in picking out some of my blood work. I've been curious lately about autoimmune stuff and asked to have my levels checked.

I've been dealing with a lot of OI symptoms - lots of dizzy spells and blackouts and blood pooling. We took my blood pressure sitting and then I told her we had to wait a few min. standing to see a drop. Then the machine wouldn't take a reading on standing. So we used the other machine, same deal (it was either too low to get a reading or due to my shaking hands). By the third time (she did the reading by hand - the old fashioned way), I was really quite dizzy (seeing spots). My BP only dropped about 25, however, she very obviously noticed the tremor/shakes as well as the purple hands.

After the third time I sat down and wasn't able to get up for a while because I still had spots from a partial black-out. It was embarrassing, however, in a way it was good because she finally saw the tremor I have explained and she clearly saw my purplish hands which she said is common in vascular conditions.

She's hoping to discuss these issues with my specialist or perhaps see if we can find me a specialist of some kind here in town.

She checked my throat and found swollen glands as per usual. I think they are just a permanent part of M.E. for me. Also she observed three blistery patches in my throat.

So I have some blood work to do and also an ultra sound for my thyroid. While my levels are always normal, in the past I've had cysts on my thyroid as well as goiter.

We also filled out the paperwork for my medical leave. I feel really good about it. I'm hoping to do some healing (and art) and just try to recover emotionally and physically from this relapse. I told her I would like to find some kind of treatment that will help me get well enough to go back. We're meeting again in January and can hopefully follow up with some kind of plan.

Wanting More - a poem

it's a puzzle
and there is a piece
that lays missing
a quiet shard
that never allows its full healing

you can pretend
so others won't see
becuz who would ever really understand.

what it's really like
to never feel well
to have to battle
and yet accept all at the same time

to wish and wish
only to be pressed down
to not having the strength
to wish at all

it's not cancer
it's not death
it's not visible

its stealth like quietness
steals your life
inch by inch
your only 'choice'
is surrender to it
to not go crazy

people who do know
- don't really know
it's almost like they've forgotten
how much a struggle this is
who would want to think about someone they love
in this much suffering

so you numb yourself
caffeinate your exhausted body so you can function
force yourself not think about the 'symptoms'
becuz there's no real name for it...

no cure...
only shrugs, and silence
making you be the one
to have to endure

but don't complain
who wants that
don't look outside
at everyone running around
effortlessly

don't look back
at all that you've lost
sure grieve
- privately
but you'll get better in time..
right...?

think positively
push yourself
collapse in the shadows

when all you want is to feel health
to walk and not be leadened down
to think and not muddle through fog to get the thoughts out
to dance, sweat, feel your heart pound.
to work, earn a paycheck, build a life
to sleep and awaken refreshed.

to feel normal
what is that like....
after 8 yrs i no longer remember.

so what do you do now?
you still have days
where getting out of bed is like climbing a mountain
and the good day is a whisper of who you once were

accept that.
except that....
I want more......


My friend and fellow M.E. sufferer, Shannon, wrote this poem and she was willing to have me share it here. I think it is a poingnent, insightful peice about the loss and longing that is part and parcel of having M.E.

Medical Leave

It's official. I'm taking a one or two term medical leave from the PhD.

So, I'm going to be off until either May or Sept., depending on health and other things.

I may still do a little plugging away - reading some papers I have downloaded, drafting a proposal - or I may do nothing.

I want to intentionally focus more on my health....as in healing (not fixating). For example, perhaps I will try to pursue some treatment for the POTS and maybe I'll try to find myself a Dr. or specialist here in town. At least I'll make an effort to get in contact with my specialist.

With the pressure off, I'm hoping I will continue to get a little stronger. Historically, we are coming up on my worst time of year health wise (Feb - April). However, since the fall was so surprisingly bad, perhaps I'll have a good winter for a change? One can hope right?

I feel like I've made the right decision.

The hard part will be financial, but I'm sure I'll manage.

Why? Tell me why?

For three days I've been feeling decent. Just like a mild flu...not much more.
To top it off, it makes no sense?

I had an event I've been wanting to attend for a month - a friend's dissertation defence and celebration. So I planned way ahead. I spent the 3 or 4 days beforehand mostly in bed. My one roommate switched a shift so she could attend the events as well, but also drive me.

The defence was a 1-1/2 to 2 hour event in the morning. Then I rested for the rest of the day and we went for 2 hours of the evening social/dinner.

Not that I was feeling fantastic, but I wasn't completely miserable either (for a change).

The next day I wasn't too badly, however, often my real crash comes 36-40 hours later. But 48 hours went by and still no crash??? What? I haven't "gotten away" with anything in 6 months.

And now it's 5 days later and still no crash? To top it off, I've been on (albeit) very short outings the last two days!!! I went and rented some movies yesterday all on my own! I feel a little ridiculous to celebrate such a simple task, however, it's been SO SO long since I could manage an outing without either help, tears, misery, an awful crash (or a combination of all four).

The things that are going on in my head at present besides "wow, I'm loving this!":

1. Enjoy it while it's here and don't think about it.
2. Enjoy it but still be careful because this is when you always over do it and end up back in a crash.
3. What did I do right, if anything?? There is no rhyme or reason for these good days.
4. I want to figure it out so I can keep the good days coming.
5. Should I go back on my plan to take a medical leave? Maybe I can handle doing some work on the PhD from home this winter afterall?

Here are some of the reasons I may be doing well:

months and months of rest - the accumulation is now paying off

it could be nothing of my doing at all - perhaps my body is just getting on top of the ??? illness for a few days

My roommate who's been off work with a heart condition since spring is away. Despite the fact I love him, maybe the hours alone just resting with no social or household stress has helped.

Maybe (ironically) I have an infection like a cold? Interestingly, if I catch something, the M.E. often improves during the first few days of the immune assault (prior to symptom onset).

Anyways, it's fun to share some good health news for a change :)