A Bit of This and a Bit of That

Finally had my appointment with the respirologist.  It turns out I have something called NSIP (non-specific interstitial pneumonia). 

 Apparently this isn't as good news as I was expecting after talking to the surgeon.  NSIP is not treatable except when it gets really bad and a lung transplant is necessary.  To that end, the Dr. has asked that as I am still young (bless his heart!), I should start seriously thinking about losing about 50 to 75 lbs and get myself a bit fitter.  This tells me that he does indeed see a transplant in my future.  However, he never really answered my questions about the likely hood of needing this or 24 hour oxygen or any other long term effects of this disease.  Perhaps he is one of those who dread telling someone bad news?  He pointed out a couple (or more) times that everyone who has this has a different response. In his defense, I really didn't push for answers - I think I was too afraid of what he might tell me. He also said that at a later date he will likely start me on some medications that will help slow the progress of the disease (don't know why he didn't start me on them now though).

I did Google for more information, but decided that I'm not 100% sure that I really want more.  If I know, for example, that the normal life expectancy after diagnosis is about 5 to 7 years, would I act differently than if I didn't know?  

I suppose losing weight would be a good idea, even without the 'just in case' scenario of a transplant.  Thing about that is, I have crappy willpower to lose weight.  I've been at this same weight (give or take a pound or two here and there) for a very long time now.  I really don't foresee my diet changing any time soon and as for exercise I don't know how I'm supposed to exercise when any exertion puts me seriously out of breath.  I will definitely have to keep this in mind and talk to my GP when I see her next month.  The respirologist said he would be sending information to her - I just hope she gets it before my appointment.

Thinking of her reminds me I really must make a list of things to discuss.  I'm quite comfortable with her and believe she won't pull punches when we talk.

I took my house off the market about 2 or 3 weeks ago.  I fed myself some excuses for it such as, I've gotten tired of the damned sign in my front lawn and having to keep the house ready for showings and I'm tired of keeping the house show ready but in reality I think I've just given in and think I'm never going to be able to go home to Alberta.  

With the combination of gloomy days, cold weather, ongoing pain and now the results from the biopsy, I'm just too darned depressed to keep the house up.  Some days it is all I can do to get dressed and feed myself.  Thank heavens for crochet and a list of items needed by Christmas - these keep me from spending the entire days sleeping or staring at endless videos.  I am still looking forward to my trip to Mexico but really wish I could find someone to join me for part of it.  2 weeks of glorious, warm sunshine and the ocean air will be a very welcome break, especially as for the last few days I just can't seem to warm up.  I'm just worried that 2 weeks on my own would be too much but, hell!, I'm on my own for much longer than that here in my tiny corner of the world so it should be a breeze.

Thinking about the trip reminds me about hauling the oxygen machine with me wherever I go.  I guess I need to consider the fact that it isn't going away any time soon so I'd best find ways to manage carrying it as well as other things, such as my purse, dog leash, shopping bags, etc.  After experimenting with the various size tanks and the small machine, I've decided that the tiny tank is the lightest of all to carry but as you can imagine, has the shortest life at about 1 hour of continuous use.  The mid-size tank has a 2 hour life and weighs a bit more but is still manageable to carry.  The large tank is only good for in the house as too big and heavy for me to manipulate up and down stairs.  It has a much longer lifespan than the others at about 4 hours of continuous use and is usable with a very long tube so I can put it on and go throughout almost the entire house. I could be wrong about the number of hours of use with the large tank as I only use it when needed when I'm in the house so it lasts for a very long time. The portable oxygen concentrator machine offers about 7 hours of continuous use with the 2nd battery attached.  As I only used it when needed, the machine lasted for a full day of shopping.  This handy little machine is what I took with me to the US for my recent bus tour and will be taking to Mexico.  I love the adaptability of the machine but it is rather heavy (about 9 lbs.) and somewhat noisy.  This is the machine I need to get used to especially before my trip where I will be carrying it as well as my purse, cane, carry-on and suitcase into and out of the airports.

I just remembered I had promised to talk about my meeting with my littlest sister last August. My next youngest sister (the one who moved back to MJ from Ontario) was here to help me out after my surgery.  As sisters are wont to do, we got to chatting about family members. My youngest sibling hasn't spoken to me since 2000 for reasons unknown to me.  This, of course, came up in the discussion as I was hoping B could tell me her reasons.  Anyway, during this conversation it came up that D was trying to sell her house and B had a general idea of where it was.  I put 2 + 2 together and by looking on realty sites, found her house and directions to it.  B and I decided to pay her a surprise visit and showed up on her doorstep late one afternoon.  I was afraid she would slam the door in our faces but she did not.  However, she also did not invite us into her house so we had a brief chat with her on the inside of her open door and us on the outside.  She did accept my phone number and agreed to call me sometime (which, as expected, hasn't happened yet).  I am now toying with the idea of showing up on her doorstep again to invite her to my house for Christmas. As she is Wicca, I don't know if she even celebrates the season.  Family!! can't do a damn thing about them!!

This is getting to be a rather long post so will now sign off before you are all nodding your heads in slumber.
Til next time!

Just a quick word

Haven't posted for a bit so thought I'd touch base with anyone who reads this.

I got my results from my biopsy and it was good news.  I am apparently hypersensitive to something in my environment.  Still waiting to hear from my respirologist for more information and treatment options.

Still in quite a bit of pain from the surgery but it is finally starting to let up.  My frozen shoulder still bothers me but has greatly improved.  My hip has decided it wants some attention so has been giving me some bother.  Luckily, once I'm up and moving it seems to settle down.  Guess I'm just getting old!

On another front, I decided to take my house off the market for the winter as I really don't want to move during the winter and after over 2 years of keeping the house show ready, I'm taking a break and letting the slob in me take over for a while.

Met up with my baby sister around the end of Sept.  That is a topic for another blog post.

Nothing much else to say today.  Will check in later in the month.

yakatchalater!

Surgery update

I had the biopsy done almost 3 weeks ago now and am impatiently waiting for the results. Apparently they can take from 4 to 5 weeks!
St Paul's Hospital was a decent hospital although the nurses didn't respond to the call buttons as quickly as one would expect.  This may have been partly due to the fact that my room mate frequently used hers, often for no real reason.
I discovered that morphine is not my friend (although it did remove the pain effectively).  I got extremely dizzy and got a bit panic-y on it.  Once out of hospital, I figured I could manage with just Tylenol but after going through almost 50 tabs in a week, I figured I needed something a bit stronger. Saw a Dr. to have my stitch taken out and got a script for Temedol (sp?) with Tylenol.  Unfortunately, this hasn't really done the trick super effectively as I am still in a lot of pain.
The 2 small incisions have healed up nicely but the one the tube was in is being the slowest and most painful to heal.
My awesome little sister came to stay with me for over a week and was a great help.  I got spoiled with her cooking for me and she even did all my laundry!  The most amazing part was that she put up with my bitchiness when the pain was bad.  I've discovered that when I'm hurting, I'm not a very nice person to be around. Kudos also go to my brother who looked after her cats so she could come and to my brother-in-law who looked after my little dog for me.
While little sis was here, we paid a surprise visit to our littlest sister.  She hasn't talked to me since my mom died in 2000.  She didn't slam the door in our faces as I feared but then she didn't welcome us with open arms either.  She stayed in her doorway and we stayed outside.  At least she accepted my phone number - time will tell whether she will call or not.
As B had to go home to pay her rent and see her missed kitties, I decided to drive her to MJ.  This may not have been the wisest decision.  I was OK until about an hour from MJ when the pain kicked back in big time.  I was very glad to get to ME's house, let me tell you!  Then some darned white stuff started falling from the sky and made the highways somewhat dangerous to travel on.  It didn't take much arm twisting to make me stay an extra night in MJ.  The drive home was uneventful albeit somewhat painful and I am now home safe and sound with my puppy home with me again.  I imagine she is feeling a bit lonely after being with Bentley here for about 4 weeks then a couple weeks with all 5 of ME's dogs.  For myself, it is nice to be home and have my privacy and all, but I do miss having my sis here to chat with.
Now I just have to develop some patience so I can wait for the next week or so until I hear from my Dr.  I'm hoping that he will say it is something that can be fixed by meds and/or a diet and exercise regime.  Fingers and toes crossed.
Til next time, toodledoo!

Feeling much better after that rant on my last post.  There is something cathartic about yelling on 'paper'.

Still feeling my way around the O2 tanks but starting to get the hang of it.  Just wish I had smaller ones for running errands around town.  Will have to talk to my rep about this.  I know there are smaller tanks but I think my monthly allotment is by the number of tanks I get no matter what size they are.

I had placed my order for new tanks as I was supposed to and the delivery guy came around (on Wed instead of Tues like I'd been told - holiday weekends apparently make the deliveries a day late).  He said he usually only delivers replacement - fresh for empty tanks.  I did manage to get an extra small tank.  As this was all before I had truly woken up, about 2 min after he left, I realized the 2 tanks I had on the go were both empty.  So now I only have 3 small tanks and 1 big one.  Wonder how long they will last.

Had a wee scare last night when I coughed up some blood but it was a one time thing so I think my nose must have bled, dripped down my throat and this is what I ended up coughing up.  I've been getting nosebleeds from the O2 - this is apparently common as the oxygen dries out the nares.  Next time I'm out and about, I'll have to pop into the drug store and get something for this.

I hate when something/someone tells you that you mustn't do/use/eat/etc, a certain item but doesn't tell you why.  The information I find about oxygen is that I mustn't use petroleum products.  Why?  If I put some Vaseline in my nose and then use the O2, will my nose catch fire? or maybe melt away? I've tried googling this but haven't yet found an answer.

I had my pre-op appointment for my upcoming biopsy.  Chest X-ray, blood work, EEG, meet with a anesthesiologist, and answer a hundred questions. A long boring day.  I was in the hospital for about 4.5 hours.  11 more sleeps until I get to go for a mini-holiday courtesy of Sask Health.

The happy side of the day was meeting my cousin for coffee.  We yapped for about 3 hours!  I had full intentions of stopping at the grocery store for cat and dog food but when I got into the car and saw the time I had to high-tail it home for my crochet group.

Thinking of grocery stores and the like, I've been avoiding going out to run any errands - just don't want to go out and have to lug the darn tank!  Will definitely have to go tomorrow though as kitty has no soft food and the dogs don't have enough to get them through tomorrow.  Also, I need to get a few groceries or I'll be going hungry as well.  Another thing I've been avoiding is doing laundry.  I'm not 100% sure if it is because I get so out of breath when I use the stairs, or if I am just being lazy.  It is most likely a combination of both.

I must admit (but don't tell anyone) that I am a wee bit scared of the upcoming surgery.  Not as much about the procedure itself, but of what the results may tell me.  I've always said that if the bullet has my name on it, there is nothing I can do to avoid it.  I've been trying to accept that if the results aren't great, I can deal with it, while still holding onto hope that the Drs. will find that it is nothing major.

I'm not supposed to do any lifting, housework, etc. for 2 weeks after the surgery.  Don't know how I'm supposed to manage that as I live alone.  I'm toying with the idea of asking my little sister to come stay with me for a bit but I don't know that we could live together for any extended period of time without killing each other!  She has trouble with stairs as well, so this might not be a good fit for her either unless we drag the mattress upstairs for her to sleep on.  Something to think about anyway.

Just took a brief look back at what I've written, I'm all over the place - jumping from topic to topic.  I could edit it to make it read better but have decided not to.  This is what my thinking processes are like lately - all over the map!

Toodle-oo!

Warning! Foul Language

I'M PISSED OFF!! AND YES I'M AWARE MY CAP LOCK IS ON!  IT IS ON BECAUSE I'M YELLING!

I HATE NEEDING THE OXYGEN TANKS!  I HATE NOT BEING ABLE TO BREATH PROPERLY WITHOUT IT.  I can't even go to the fucking bathroom without getting out of breath let alone have a shower, make a meal, do housework and so on and so on.  It scares the shit out of me that I can't catch my breath sometimes.  

I HATE THE FRICKING COUGHING SPELLS AFTER EVEN A BIT OF EXERTION!  I hate that I cough hard enough to make myself pee and sometimes even hard enough that I almost puke.  I hate trying not to breathe deeply so I don't trigger another coughing spell when I know that damned tickle isn't going to go away until I do.

I HATE THAT MY FUCKING SHOULDER HURTS LIKE HELL IF I SO MUCH AS MOVE IT THE WRONG WAY FOR EVEN A SECOND!  I'm having to learn new ways to dress, cook, etc. but I still forget sometimes and I pay for my forgetfulness with pain that is often enough to make me want to curl up in a ball and cry, screech out every swear word I know or at the very least bring tears to my eyes.

I HATE THAT MY POOR INNOCENT KITTY IS INJURED.  And I hate myself because I just don't have the energy to look after her today.  I hate that I just don't have it in me to give all the critters the attention they deserve.

I HATE THAT THIS GOD DAMNED HOUSE ISN'T SELLING SO I'M STUCK IN THIS GOD FORSAKEN HOLE IN THE MIDDLE OF NOWHERE.  OK, I know there are good parts about this town but I'm in MAD mode right now!  I want to go home to where my friends and my kid is.  I have a friend going through some shit right now and I'm not there to help her out.

I HATE THAT I MADE SUCH A STUPID BUNCH OF FRIGGING DECISIONS AFTER HOWARD DIED.  I resent that no-one bitch-slapped me and told me to smarten up!  I think in hind-sight that I was hoping someone would.  I hate that I come across as so stubborn that my friends figured intervening wouldn't do any good.

I HATE THAT HOWARD UP AND DIED ON ME!  When I meet up with him in the afterlife, I'm going to hug the hell out of him and then I'm going to beat the snot out of him for leaving me!

I HATE THAT MY SISTER DIED!  She was just too young to go.  I am mad as hell at her too because she probably wouldn't have died if she had followed Dr. orders and treated herself better.  I'm mad that I didn't get off my ass and go to see her again while I still had the chance - 'I'll go see her later this summer' - yeah, that fucking played out well, didn't it!

I HATE THE DR. FOR NOT KNOWING WHAT IS CAUSING MY LUNG PROBLEM!  He's the fucking Dr. so he should know what it is and how to make it better!

I HATE DEATH PERIOD!  I miss my mommy so much every day,  I miss seeing my dad whenever I would drive into the Supermarket parking lot.  I think of him every time I hear a train whistle blow.  I miss my awesome brother-in-law who was taken by the hated fricking cancer. Hell, I even resent that death took my grandparents before I was born so I never got to know them.

I HATE WHEN PEOPLE SAY I'M A STRONG WOMAN!  I'm no stronger than anyone else.  I just don't show that I'm hurting because everyone has their own problems to deal with and don't need mine as well!  That is BULLSHIT!  I do want some people to know so they can hug me or hold my hand until I don't feel so damned alone/scared/hurt.  I do want someone to cry with me, thus letting me know it is OK to cry once in a while.  I want to know that someone out there really does give a damn about me!

SOMETIMES I EVEN HATE MYSELF!  I hate that I can't allow myself to cry,  I hate that I feel so much - sometimes I wish I could just be that gal that doesn't give a crap about others. 

I REALLY HATE THAT I'M SCARED THAT THESE DAMNED, FUCKING LUNGS WON'T GET BETTER!  I keep trying to focus on what the Dr. said about the progress of the scarring on my lungs - IPF goes from bottom up and mine is going from top down but aren't always successful. I don't have the foggiest frigging clue what that truly means but I'm terrified about it being IPF and a potential death sentence.  I really wish I hadn't googled lung scarring when I first learned that I may have some.

I so want to talk to someone about all this but I don't want to put my problems on anyone else's shoulders.  I guess I'll just continue to suck it up and hope that one day I don't explode!

I am afraid to use the O2 too often as have only a limited supply to use every month. I've only had the tanks since Monday and have already used up one and most of another.  

Rant over.  Writing this and my previous bout of yelling to no-one (but the dogs weren't sure if they should run or come to make me feel better) seems to have eased my mood a bit. Now I am exhausted so I think a nap may be in order.

Til we meet again.

The Demon Rears Its Ugly Head....Again!

Here is my past few months in a nutshell.  Once I get some health stuff settled, I may do another blog about some of these adventures.

February - I went on my 2nd solo trip. For those not in the know, my first solo trip was a few years ago.  I did a short road trip to North Dakota for a few days and found the trip kind of boring without someone to share it with.  After this, I had some hesitation about going to Mexico alone but I thoroughly enjoyed the trip - in fact, I didn't want to go home after my week was up!  I loved it so much that I bought a small 5 yr timeshare package.  I am now in the process of booking my next trip there.

May - My oldest sister passed away unexpectedly at the young age of 67.  Needless to say, this was a sad period for me.  Her memorial service was done in Edmonton on July 28.  It is sad that the only time I seem to get in touch with my cousins is at funerals.  I got to see my cousins Gary and Bruce for supper when we arrived before and then at Jaye's service the next day.  Colleen did a nice presentation of her mom's life at the service.

July - ME and I helped Bonna move to Moose Jaw.  There were a few bumps along the way, but ME managed to find her a small apartment and I helped arrange her moving van and flight for her and her kitties.  She is now waiting for her furniture to arrive.

Present - Kayla has a house guest.  ME's Jack Russell, Bentley (AKA Tripod) is visiting despite Majik's disapproval.  Tripod will likely stay until ME gets back from Denmark in a couple months. The adventures of this visit may be fodder for another blog post.

Now for the elephant in the room and the reason for the blog post - my health.

Since my last post there have been a few developments.  I finally got to see the Respirologist and, although he didn't know the cause of my lung scarring, he said it wasn't IPF (Idiopathic Pulmonary Fibrosis).   He said IPF scarring goes from the bottom of the lung to the top and mine is going in the opposite direction.This took a huge load off my mind. He had me go for some more tests - walk tests, bronchoscopy, echo cardiogram.  After these tests it was determined that I need O2 therapy when exerting myself (i.e. walking or doing mundane tasks like housework).  I am still waiting to hear from the O2 supplier. The bronchoscopy didn't answer the question of what my diagnosis is so I now have to go for a biopsy of my lungs.

That brought me to a visit this week to the surgeon who will be doing the biopsy.  I don't know what I was thinking, but I thought this would be a day surgery thing like the bronchoscopy was.  Nope! I will get to enjoy a mini vacation courtesy of the Sask healthcare system.  OK, I'm thinking - I can handle a short hospital stay no problem.  Then the surgeon awakens a monster that I had thought had been slain - he brought up the dreaded IPF as a possibility.

When I had been concerned (OK, maybe concerned isn't the right term - more like shitting bricks!) last autumn, it had only been because I had found some scary information on the internet.  Everyone knows you have to take Googled information with a grain (or a ton) of salt as any Tom, Dick or Jane can profess to knowing much more than they actually do.  But now the monster has been raised as an option by a face to face meeting with a qualified surgeon! As you can imagine, I am now right back into the emotional turmoil I was in last fall plus.

I decided to write about it here as a way to maybe release some the the turmoil presently running wild in my mind.  There is something about putting your concerns into words to help you focus.  Even though I am not yet finished writing this post, I already feel a bit calmer and will focus more on what the Respirologist said about the path that IPF takes and that this is not the case for me.  I will have to keep reminding myself of this whenever I start to get scared.

I will NOT allow this to keep me from doing the things I love to do. As I previously mentioned, I am in the process of arranging for a 2 week trip to Mexico to bask in the sun and enjoy the healing ocean breezes.  For some reason, I feel like I can breathe much easier when near the ocean.  I had to cancel my plans for a summer road trip this year due to waiting for appointments with Drs. and for tests, but am already thinking of where I can go next summer (Texas sounds appealing for some reason).  I will just have to find ways to accommodate O2 in my travels!

Thanks for listening to my spiel. I expect to have my surgery in about 4 weeks so will keep you posted.