Adventures

Life has been an adventure lately.

HEALTH ADVENTURES:
Right when I got back home after visiting family over the holidays, the c. difficile came back.  I guess this happens in 20% of cases.  Since then, my NP and the pharmacy have been trying to get another round of vancomycin approved....and we wait.  Copious amounts of probiotic seem to have helped some.  Unfortunately a plethora of trips to the bathroom caused something called A. F.   I won't go into more detail than that, but if you know what it is, you know that it is excruciatingly painful.  One of the worst pains of my life.  So,  I've been doing a very very light diet in order to decrease my trips...it's been awful.  It's hard to sit, hard to stand, and sometimes even hard to lay down the pain is so bad.

What an adventure!!!! It seems to never end.  I really thought I'd solved the c. diff problem only to be hit with the reinfection and this subsequent added joy, the AF.  A double WHAMEE!

EDUCATIONAL ADVENTURE:
Despite the pain and ill intestinal tract, the M.E. hasn't been as bad as the fall was so far.  Yippee! So, my plan to go back and work on my PhD is in place.  Now before you worry about the amount of effort and possible subsequent crashes or relapses, put your mind at ease.  I'm working at home and in bed.  I am starting with a schedule of 1 hour a day and so far so good.  If I can maintain this for a while I will up it to 1.5, etc.  I'm holding my breath, but so far I'm actually enjoying being engaged in the academics.  I mean I managed to do a Masters degree while ill (with accommodation and extra time).  I try not to think ahead too far with this, but if I focus on one day at a time, it's amazing how stuff gets accomplished.  My favourtie quotation since I've been ill is "A journey of 1000 miles begins with a single step".

DRIVING ADVENTURE:
I also drove myself to the border (just over 1/2 hr away) to pick up a gift from a friend.  After sitting for 10 minutes the pain of the A.F. was bad.  It only got worse, but still, it felt so empowering to be out on the beautiful open highway with no traffic and amazing scenery.  I took the dog for company and stopped at a beach along the way to let her run.  I haven't driven that far in ages and I expect I'll crash, but I'm still feeling proud.

ADVENTURES AT HOME:
Things with the drama here continue.  Unfortunately it's not my place to write about the issues here, but they sure add to the adventures.  While I'm an outside party to the happenings, it sure is hard to watch the suffering of others.  Things are often awkward, frustrating, and sad around here these days.

SOCIAL ADVENTURES:
So my one and only new years resolution this year was to broaden my circle of friends here where I live.  I realized recently that I have a very very small support/social network and that I would just love to have a few more friends.  Over the time since I moved back here, it's been really really hard to meet people.  I've made 7 pretty decent friends overall (outside my roommates who are friends from way back) 6 of whom have since moved.  When you say no to invites 9 out of 10 times, it's hard to make friends.  When you live in your house-cave, your bedroom-cave and have limited energy even sometimes to talk on the phone, how does one make friends?  Top the fact that I am now at an age where most people already have their circle.  I don't have a workplace to meet people and my volunteering attempts all flopped because this illness can not be scheduled.  Plus, I don't have a partner or family which is what most people my age are doing right now (raising kids).

Despite these challenges, I'm going to try to find ways to reach out.  I might even try being a little more direct if I get a good feeling about someone with friend potential....e.g. "look, I'm chronically ill, but if you want to hang out sometime and ask me 10 times, chances are I may say yes once and we could have a blast".  One of my long distance friends and I joked that I should post an add "Very nice (chronically ill) person seeks friend.  Must not be put out when most outings are declined.  Friend type activities must be low energy but could include watching movies, drinking wine, talking about books, playing scrabble, eating good food.  Must enjoy cynical sense of humor".  Does that sound pathetic?

Wish me luck.

Some Perspective

Warning: I am discussing some stomach issues here which may be a little graphic, so only read if you want to know about my intestinal woes in depth.

It's a tricky thing sharing your life on a public forum.  For the most part, the people who read this blog are fellow sufferers.  However, I also have some friends who read it.  There are things I don't necessarily want to share or disclose partly because it doesn't seem appropriate for one or the other of these audiences.

I've also found that talking about the issues related to family often makes people really uncomfortable.  I wonder if it's because they just don't know what to say?  Or they believe I'm exaggerating somehow there are so many issues?  I think, too, with issues of mental illness which are rampant in my family, people are just afraid.  You know you can't "catch" mental illness by association.

Anyways, I had a decent trip south considering.  I think perspective-wise it was really good for me.  You see my parents are aging and with family mental health stuff to boot, my personal health issues barely make the radar.   Which in this case was good for me.  As I watched one sibling with schizophrenia struggle to deal with the stresses of Christmas it just hit me all the blessings I have despite being sick every day.  I mean it's no party, that's for sure.  However, I just saw how hard this family member was trying to manage and I felt such empathy on the one hand, and gratefulness on the other for my intact mind and lack of confusion about the world in general.

Then I visited one of my brothers and family for a few days.  Despite the fact that I only see my niece (8yrs) and nephew (7yrs) once, or at best, twice a year, I was a complete rock star.  How is it that my niece was so unbelievably excited to have me there?  I mean she'd even bought me presents at a craft sale with her allowance in anticipation?  The three of us laid in the guest bed and played hidden object games on my computer, did art and Lego, I read to them, and we did a little playing outside.  I crashed hard for a few days after, but I loved spending time there.

The travel as always was ridiculously hard, but at least the diarrhea was under control with the antibiotic.  And now that I'm home, I don't feel any worse M.E. wise which is great....although I am very weak and exhausted overall.

OK, so the bad news is that I finished the vancomycin on the 26th of Dec.  The day I flew home (Dec. 31st), infection hit again.  My gut was/is in terrible shape again and some of these recent days I've been in the bathroom at least 10 times a day!  I'm pretty sure it's a recurrence of the c. diff.  So I spent 3 hours at my clinic's walk-in, got another prescription which we later found out needs a new form for funding!  Suffice it to say, I'm so frustrated.  I thought for once I'd managed to find an answer to something (my chronic diarrhea was caused by c. diff) and remove that layer with the antibiotic.

So it's been touch and go.  I've managed to stay hydrated enough not to have to go to emergency.  I'm hoping I can manage the weekend and that next week we can get the drug and I can do another round.  At least today the diarrhea seems to have eased up a bit.  Cross your fingers for me.  One woman at the walk-in said that emergency was so busy (what with influenza going around) that there was standing room only and a 6-8 hr wait.  There is no way I could manage that with the Orthostatic Intollerance and the M.E.

Books I Read in 2012

Here's a list of the books I read this year.  I starred my favourites.  As you can see, I tried to read some of the old children's classics I never read as a kid.  For example: Jungle Book, Watership Down, Wind in the Willows.

I am HOME!!!  Which is (I think) good.  And I survived Christmas in the south. There were challenges based the the situations down there (more to follow in a later blog), but on the positive, it made me realize that things could be a lot worse (they are for certain family members).

So if you are a reader, maybe you can find a good pick for 2013 in this list.

And Happy New Year to my blogging friends.

2012

1. I am number four - Pittacus Lore

2. The Jungle Book – Rudyard Kipling

3. David Copperfield - Charles DIckens

4. The Power of Six - Pittacus Lore

5. Lizard Cage - Karen Connelly

*6. The Night Circus - Erin Morgenstern

7. Dance with Dragons - George R. R. Martin

8. Orx and Crake - Margaret Attwood

9. Heart of Lies - M. L. Malcolm

10. I Am Number Four: The Lost Files: Six's Legacy - Pittacus Lore

11. Horten's Miraculous Mechanisms: Magic, Mystery & a Very Strange Adventure - Lissa Evans

12. Inheritance -  Christopher Paolini

13. How to be Sick - Toni Bernard

14. The Tiger's Wife - Tea Obriht

15. Seven Splendid Suns - Khaled Hosseini

*16. Watership Down - Richard Adams

17. Augusta Locke - Willian Haywood Henderson

18. The Tiger - John Vaillant

19. Sharp North - Patrick Cave

*20. Sweetness in the Belly – Camilla Gibb

21. Churchill on Hudson Bay - Agnes and Bernice MacIver

22. The Chosen – Chaim Potok

23. 100 Years of Solitude - Gabriel Garcia Marquez

*24. The Diviners - Margaret Laurence

25. Harry Potter and the Goblet of Fire – J K Rowling

26. The White Bone – Barabara Gowdy

27. Okay for Now – Gary D. Schmidt

28. A Good House – Bonnie Burnard

29. The Flight of Gemma Hardy – Margot Livesey

30. The Casual Vacancy – J K Rowling

31. Magisterium – Jeff Hirsch

32. Cat’s Table ­– Michael Ondaatje

33. The Sisters Brothers – Patrick deWitt

*34. Divergent – Veronica Roth

35. Insurgent – Veronica Roth

36. The Tower, the Zoo, and the Tortoise – Julia Stuart

37. The Virgin Cure – Ami McKay

38. The Prisoner of Azkaban – JK Rowling

39. The Kindness of Strangers – Katrina Kittle

40. The Maelstrom – Henry Neff

41. Summer of the Wolves – Lisa Williams Kline

42. The Hobbit – J R Tolkien

43. The Wind in the Willows – Kenneth Grahame

44. Plainsong – Kent Haruf

small miracles

First, I would just like to say thank-you to all who wrote and/or called to support me last week.  I was in a very low place.  And when I'm that low I usually feel very very alone.  I don't have a huge support network, but after receiving all the support I did last week, I realize I do have people in my life who care.

We've been facing grey day after grey day here.  I don't mind winter when it's snowy.  But I do not like that brown mucky pre and post winter time.  Well it rained and we lost most of the snow.  What's left is slushy and brown.  I woke up this morning and thought it must be really early because it was so dark out, but it was just the grey socked-in sky.  Isn't Thunder Bay supposed to be one of the sunniest cities in eastern Canada?  I could use some sun beaming through the window.

While I can complain about this dull, gloomy weather, on the positive side, the antibiotic vancomycin that I had to wait weeks for started to do it's thing after about 24 hrs.  It was amazing.  While the intestinal issues aren't completely gone, I'm not spending near the time sitting on the throne and since I started the drug I have not been nauseous at all....even once.  And I've been hungry!....I can't remember the last time I felt hungry like this?  On the other hand, I'm still having some intestinal pain and the drug is causing some pretty significant fatigue.....or is that just the M.E.?

Anyways, I feel like this drug has been like a small miracle.  I'm so glad I got it and a little amazed at how quickly it worked.  I really wonder how long I've been dealing with this c. difficile? Months? Years?

My roommate came down with what we thought might be influenza, but after less than 48hrs he's back on his feet so it must have been some 24hr bug?  I'm hoping with my low immunity that I don't catch it.  Fingers crossed.

It did remind me, though, how tough us sickies are.  Seriously.  He was so miserable (and rightly so); but as he lay there moaning I thought "we do this every day, for years!".   I wondered what would happen if I moaned and groaned every single day?  I think the few people I know would run in the opposite direction as fast as they could.  (To be fair, I do a good bit of moaning here on this blog).  But it did give me a moment of self respect.

Anyways, I thought I'd share that small bit of good news.

Imploding

You know when you can't stand your own life for another second?

Things here are kind of messed up right now (not my issues, but they affect me). But the thing is, I can't get away.

I'm too sick to drive anywhere and I have no money (enough to pay bills and I've already wracked up credit for Christmas).  I considered a motel but I'm just too broke.

I just talked to my parents about my visit south (which will be a kind of get away) and they seem to be completely clued out to how sick I am and what a challenge this will be.

It's no wonder people face such depression around the holidays.

To top it off, I really have no one to talk to as all of my (a whole of 3) local friends are wrapped up in this mess.

Its the closest I've come to wanting to just die for a while.  I mean if I were healthy and had a support network of people in my life, it probably wouldn't seem near as big. And no, I'm not going to kill myself but after 10 years of laying around sick, suffering and useless to the world, I can't imagine being too upset if my upcoming MRCP shows cancer....

It's just too much right now.  I'm depressed.  I almost always get depressed this time of year due to the low light thing, but this just hit like a brick after doing pretty well for a while.  At least I went a few months not hating my life.

You know I realize life wasn't perfect before getting sick, and had I stayed healthy, I still  would have had challenges.  But it's just too much.  I miss having power over my own life.  I think this is the main thing that is bringing me so low at present.  Power to go for a run or exercise, socialize, make friends, work, make a lot of choices that just aren't even an option.  I'm just so sad and fed up.

I could really use a kind word at the moment from those who know what it's like to go through life dragging around an ill body.

I'm just ready to be done with my life....I see no light at the end of the tunnel.

As for the c. difficile, the form to get the drug covered is still out there somewhere in paperwork limbo.  I've improved a bit with whacks of probiotics enough that I'm eating OK for the most part so I'm not too worried to be honest.  And I feel as if I have no advocate anymore for my health.  I realize I was lucky to be a patient of the only full time specialist in the province....but now with her gone, I feel as if I'm facing this monster of an illness completely alone.

Positive for Infection

Five or six years ago I had a c. difficile infection.  I was having intestinal distress and pain (more than the usual that seems to come with this illness).  I went to a walk-in clinic and for a change, I had a nice thoughtful Dr.  He had me do some tests and they called me later to tell me I had c. difficile.

The antibiotic for that is usually Flagyl.  It's famous for making people nauseous. The Flagyl made me vomit so much that after 3 1/2 days I had to stop treatment.  I had a great Naturopath at the time who told me to take a potent fermented probiotic called BioK.  My repeat test a few weeks later was negative so I assumed it worked.

Well as those who read this know, I've had serious intestinal woes after 2 infections last winter.  The second infection (in Feb.) felt a lot like the c. difficile, but at that point I was negative.  My NP and specialist gave me more tests to do in the summer, but I didn't bother.  I was frustrated with lack of answers.

In  a moment of intestinal distress and weakness this week, I went ahead and did the tests that were sitting in the cupboard because I didn't see how this problem couldn't be an infection?

Well it turns out I was positive for c. difficile toxin again.  Unfortunately the social welfare disability I'm on won't cover the other drug (non-flagyl one).  So now I wait until Monday to see if there is a way around it, or some program that might cover it for me.

I picked up a pack of BioK in the mean time.

For those who haven't heard of it, c. difficile is famous for its hospital outbreaks.  In its most toxic form, it can kill people.  Milder infection just causes diarrhea and intestinal pain.  It usually hits after someone takes an antibiotic.  The antibiotic wipes out the good bacteria in the gut and the c. difficile then invades.  The toxin created can cause major bowel inflammation, even perforation.  In my case (I've only taken antibiotics once in over 20 years and that was for the c. diff) I figure it's just the fact that I'm immune compromised.

I was so frustrated today because I tried to go pick up the BioK myself (I often can't manage errands).  It's only 2 blocks away (I drove) and only one person was in front of me in line; but I came out dizzy, shaky, weak, and crying it was so awful.  I'm pretty sure it's the OI as I had a couple sessions of seeing stars this morning when standing up.

How can I be this sick?  It's so frustrating - my useless body.  I hate that I have already lost 10 years of my life to this sickness and it doesn't seem to be improving.  I'm so frustrated with living my whole life mostly laying down, trapped in this stupid house.  I want to do a simple errand.  It's ridiculous, I'm 41 not 101!

To top it off, there is some drama going on here and I can't even escape and clear my head because I'm trapped here by my body, in this house.  More than anything I could use a run like the old days, or even a drive.