Checking In & Updates

HELP!

A very quick "hi" since I feel I'm neglecting quite a few friends out there.  Oh good grief, I've taken my night meds so I really shouldn't be writing.  I KNOW I'll regret it in the morning.  I'll be upset and think, "your brain told you not to go there! Why did you do it?"  Well, it seemed like a good thing at the time - that'll be my answer to myself and hopefully things won't be too bad.  (Right! Huh!)

Also, I'm beginning to realize my posts don't need to be earth-shattering info all the time (took me long enough!), that I don't need to cram every thought I've had into one long reading, and furthermore, that they do not all need to have a huge purpose with life lessons thrown in.  In other words, I guess I need to loosen up.  Just one problem: I'm not a person who can loosen up, ever, much as I've always tried!  Ask my family. Ask anyone who's ever worked on me from doctors to masseuses to phlebotomists to those who know me well. It just doesn't happen.

But to catch up those who aren't on Twitter, you've sort of missed a few "adventures" of this spoonie who is really getting ticked off with the complications from ME/CFIDS/CFS and fibromyalgia.  Last we "spoke" I'd finally had "the works" done (hair, lashes, brows). Unfortunately, I had to stop by one of our local hospitals for an X-ray after our big day out in order to see what's going on with the painful and limited motion in my left shoulder. Turns out that I'd somehow managed to mess up my rotator cuff.   (See this link for more on what great things happened that day!)

I'm hoping to bring us up to date because it's another thing I can laugh about...well, sorta.  But there are a whole bunch of things I'd like to talk about so let's pretend this is a "Friday Tidbits" with bullet points.  I'm going to tease you a bit.  These bullet points will serve as a reminder of what I want to talk about this week. Yes, folks, I'm going to try mighty hard to get back to posting on a more regular and frequent basis.  I must get away from the getting sick and hospitalized thing.  Uhhhhh..... My plan - the stories behind the following:

• Yes, ladies and gents, you may have realized why I'd gone MIA again.  It was yet another hospitalization!  
  As I laid in pain, nauseated, I have to admit that shallow me was ever so thrilled that I happened to take a bath and wash my hair before we made the ER run.  More on this later - both medical issues and "shallow" ones as well.  In fact, I did manage a very rudimentary mani while in the hospital.  More on this later. Standards must be kept!
• MY new theories about what's going on.  Well, perhaps not what is going on, but a possibility of why it's going on....
• And how could we have Thanksgiving without my addressing food?  There's a lot here.  Also, if I can get my act together I'd also like to occasionally give you a few recipes or food ideas which keep me going.  I don't know about you, but I can never decide what I want to eat, if I should eat and so forth. So, recipes and ideas, might be coming down the pike.
• I've a few more ideas for what to add to your prepared hospital (or travel) bag.  I realized I needed these additions the hard way.  
• What have I been reading?  Not much, mind you, but I'm enjoying what I've discovered.
• I can't believe I'm going to say this but...for the first time since I was a elementary school girl, I'm going to make a few real thought-out New Year resolutions. (I can't wait to see the backside of 2013!)  Instead of just grabbing the first couple of ideas that pop into my head at the last minute, I'm going to give this some real thought.  I think I have one badly needed resolution figured out which will help others.  We can even egg each other on support each other with this.
• Making a list of what makes me happy and puts me in a good mood - and why I need this list.  (It's a must!)
• Making a list of what makes me sad and really impatient and puts me in a most rotten mood. (It's also a must!)
• Why I need to work hard on making changes which will put me in a mood light enough to really have no problems saying things which I'm grateful for at next year's Thanksgiving table.  I know.  I hate to sound ungrateful but I'm putting this in at the moment because I know that there are too many of us out there who have problems coping with the holidays - and I wouldn't want anyone to think that they're alone in the not greatest of mood mode!  (Experience here!)

These are just a few of the topics I hope to discuss in the next few days/weeks.  Some have to do with the hospitalizations (the one this week and the one just prior) and the bit of brainwashing that goes on.  Or as I like to call it, "propaganda." 

I'm praying that my health allows me to follow through with that which I want to do. Following through and staying busy in general: now THAT always puts me in the best of moods! 

As always, I hope everyone's doing their very best - only better!  Ciao and paka.


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Shallow Me?

I'm not as bad as some members of my family!  My son getting a pedicure by way of fish in Southeast Asia, on holiday with his wife. 

We've been oh-so-serious here lately and I thought, it's definitely time to lighten things up a bit.  And so I have a have a confession to make.

I am a shallow person.  Yep, it's true.  I really and truly am.  I cannot handle having someone see me at my worst.  These things really bother me.

When I was in the hospital writhing in pain, as a doctor or nurse would examine me, all I could think about was how bad was my breath, when was the last time I'd had my hair cut, dyed, highlighted and low-lighted? How much were my age spots showing?  How bad did my armpits smell?  I think I realized I was totally nuts when one day my GI was upset about how distended my stomach was and I suddenly remembered that I had scars there from my gallbladder surgery last year, laparoscopically, and wondered if my surgeon (aka "Dr. Hunk") had had a chance to admire his work.  Call me silly, but I think he could care less about the scars.  But as the GI guy was worried about my distended stomach I was glad I'd lost my Cymbalta weight and that the belly wasn't as fat as it had been just a couple of months ago.

So it wasn't a huge surprise that when I got home I immediately went to work on hubs trying to get him to see why things couldn't go on like they had been: I was in dire need of getting fixed up.  I needed to get the eyelashes colored again, the brows dyed, the hair done, pronto.  Worse, I realized that I had many doctors appointments scheduled and doing all that work to look human as I'd get ready for an appointment was just too much.  I couldn't even begin to figure out where my eyebrows were in order to color them in, just an example.  My hair, so thin and getting thinner by the day, needed rollers to give it some umph if I were going out of the house and that's just too much work.

So, we finally made the big appointment.  I go to a large city for my works, a bit over an hour's drive and way too much construction and traffic to deal with.  I woke up ill that morning, running a bit of a fever but I realized that the appointments would only be postponed, not cancelled indefinitely.  And, I realized that the reason so many months had gone by since my last appointment was because I'm always getting sick or am sick or getting over being sick.  It was time to bite the bullet and just do it.   No matter what, I wouldn't find a good day and each day that passed I was looking worse.  

Nope.  Hubs wasn't going to talk me out of it.  I was strong and I could handle it.  Hubs gave in, realizing I was impossible.  He finally said the words I've waited to hear for over ten years, never thinking I'd hear them. It was, hubs said, time to find someone who could tattoo my eyebrows in.  I pushed the envelope and added, "and eyeliner too!"  He nodded.  So, now if only I can stay 'healthy" long enough, I need to find a good, reputable tattoo artist.  We are talking about the face, after all....and the eyes too.  That's prime real estate, let's remember.  We do not want the word "whoops!" coming out of anyone's month.

Now I need to explain something: just how much I loathe getting my hair done.  I would rather have a root canal.  I would rather have surgery.  A hysterectomy is preferable to getting my hair done - and I've had one of those so I know what I'm talking about!  Those of you fortunate enough to have hair will never understand this feeling.  My hair is definitely my Achilles'  heel.  There has always been so little of it.  Bad enough that my mom, my daughter and my BFF all have enough hair to fill up five women's heads each. Now with the hypothyroidism, I have less than even my usual.  I've seriously considered just going bald, getting it just shaved.

OK...you get the idea...I think.

So, after getting everything done we were on our way home.  For once I didn't try to con hubs into a bit of a shopping trip.  In fact, when we hit the elevator button, I was so "tired" that I just sat down on the floor.  I could care less how it looked. Manners?  Who cared?!

We got to the car and I couldn't believe it.  My left arm couldn't bend to buckle the two metals parts of the seat belts together and after hubs did it for me, the shoulder wouldn't stop hurting, and a lot. I finally told hubs that once we got to our town, we'd need to stop at the ER before going home.  By the time we reached the parking lot of the ER, I was holding back tears.  I'd taken pain meds and they weren't helping.

To make a long story short(er)... The kind doctor who had admitted me to the hospital last time I was there came in.  In all the madness when I wrote my last few posts, I forgot to mention that we did finally get a good doctor--- after I was horrified to see "Dr. Dear" of the infamous pancreatitis fiasco had come into the room. He had turned around and left and the charge nurse (who knew hubs) got a very good doctor to come in.  She was worried that we wouldn't like his ponytail.  

Was she insane?  Worse, did she think WE were insane and unreasonable?  Not that it mattered, but I loved the ponytail.  It showed that he didn't care what bureaucrats thought...  We hoped it meant that he only cared about medical care.  Not only that, but that probably meant that he remembered the Vietnam War.  

You must read my post (please!) where I explain why our new doctors are, frankly, so cr*ppy.  Oh come on.... I could care less about lawsuits anymore from anything I say, especially since I know that I speak the truth and I do not exaggerate.  My new mantra is, I want them - the robots and unenlightened - to fear ME.  No, I don't want to antagonize, but I've finally had it with the bullying and the incompetence.  I am ticked off, big time, and I'm not taking it anymore.  You  are nice to them and they walk over you, taking you for a weakling.  I'm not going there anymore.  And I have yet to write about the bully nurse, a huge story.  

So, Dr. NicePonytail immediately realized what I had suspected.  I didn't know what a "rotator cuff" was but those words just kept popping into my head during our drive home. It just sounded right and felt right.

Now I'd had pain in that shoulder for weeks but we all thought it was referred pain from the pancreatitis.  But that morning as I was getting ready for my "beauty day," I felt that arm pop. I said nothing.  It was minimal in the scheme of things.

But now it was screaming.  Furthermore, my BP had broken a record.  They got another machine, not believing the reading.  My usual 90/65-70 was a whopping 190/101.  Ah... how I love the BP.  It my "tell" to me of how I'm doing.

The good news is that I do not need surgery.  The bad news is that I need to keep my arm in a sling for a few days and then will need physical therapy.  The danger is a "frozen shoulder" if I don't do things right.

Now, how was my "vanity issue" in the ER?  You'd think good, given what I'd done all day. But, my lovelies, how you'd be so wrong!  I was explaining to anyone who'd listen just why my brows looked so...well, Groucho. Some of the dye was imbedded in the skin, a usual thing that goes away in a couple of days.  Of course I always need a few days to get used to the color and cut of my hair.  There was a bit of dark color under my eyes I couldn't disguise, from the lash coloring....

I can't win, can I?

But there is wonderful news.  The gift of laughter I've always taken for granted and was so afraid was gone permanently, as a result of the Cymbalta fiasco, has returned.  If the run to the ER with the arm didn't make me laugh at my luck nothing would bring it back.  So I am happy that this arm did this little trick.  I may feel differently if it doesn't heal right, but for now I'm thrilled I have something absurd to laugh at.

As to the shallowness of my being?  I'm not sure that is curable!  It was honestly inherited from my mom and if nothing else, I am my mother's daughter.

And on that note, I say my usual.  I hope everyone is feeling their very best, only better. Ciao and paka! 



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Pancreatitis or Red Herring?

Another fun day at our home!  It appears that I have one good diagnosis that may answer a lot of things going on... finally!  I've been admitted to the hospital and if things go well, we might even be able to put together a plan. 

Thank goodness that the ER doc who finally saw me felt that things were not what they seemed, that things were a bit off with the pancreatitis diagnosis. GOOD! FINALLY!  A THINKING doctor!

lt appears that I have volvulus of the sigmoid colon. The other things, including the pancreatitis, appear to have been red herrings.  I can't believe this and yet I'm not at all surprised. 

I hope you can "forgive" my quickly put-together info but I'm not at my best.  I'm worn out, depleted, with a head that's swimming.  But for four days, I've not eaten in close to 10 weeks now.  Furthermore, things may still change, things are still being investigated, but there is a bit of hope that this latest mess might finally be addressed. 

I've not done my research about this, so please just keep in mind that this is all "hot off the presses" and things may yet change.  And since I'm in a hospital bed, I'm using my iPad to write this up, so formatting, etc will be a problem.  Anyway....

This volvulus could have developed into a ischemia bowel, where the bowel dies and a colostomy is then done. I admit that I did a bit of crying when they put the tube into my nose down to the lowest part of the colon (way low) because it was and is just so gross, disgusting.  Word is that it'll have to stay in for 24 hrs, approximately. There's a lot of stuff coming up, the bile, gases, a quart-full now, and "they're" amazed at the amount. 

Who died of this, the twisted bowel?  One of the BeeGees, Maurice, if I'm not mistaken.  I remember because it was so terrifying to hear that this sort of thing can happened.

As mentioned above, the pancreatitis was a red herring, according to the doctor who I ended up with.  He just got a feeling that something else was going on.  I felt better from just hearing the expression "red herrings."  I don't know if anyone remembers that a year ago I wrote that I felt all the problems going on were red herrings, masking the real "new, major" problem, and that I was on "The Hunt for Red October."  No one knows what exactly is happening, however.  Hopefully, more answers if/when my gastroenterologist comes by, as well as "Dr.Hunk," the surgeon who did my gallbladder surgery last year.

When hubs walked into the house earlier today (that is, Friday, having not had sleep I feel as if we're still in Friday) and saw me, he immediately said, "ER, NOW!"  

I cried hard because it hurt to move at all and I had to walk downstairs, plus get into the car.  I was not about to call an ambulance as Friday night's entertainment for Dimmeydale, our neighborhood. On the way to the hospital I cried because I was so afraid of getting a tube stuck into my nose down to the nether regions I know nothing about nor care to learn about... I have enough to figure out with the darn CFIDS/ME/CFS and fibro.  I was also so afraid I'd get "Dr. Dear."  I did.  Of course.

Hubs sort of recognized him but wasn't sure if it was from one of my past visits or one who had treated our daughter.  It came out of my mouth, before I could stop my words, "oh no, Dr. Dear!"  

He recognized me, and, thankfully, turned around to leave.  At the door he said something I'd not heard or have forgotten, but ended it with, "DEAR," getting "back" at me.I very much wanted to ask him if he felt like a 3rd grade bully in a school's playground. (During my last fiasco of the run to ER I couldn't stand his condescending attitude and finally asked him to stop calling me "dear" at the end of each sentence, that my name was Mrs. BlahBlahBlah.) This was the genius who told me that my pancreatitis was just like a bit of a mild flu, sending me home with no medications, no eating instructions, not even giving VERY dehydrated me a saline bag....

Anyway, hubs had to phone the administer-on-call to complain that 2.5 hours had gone by and I hadn't been seen by a doctor.  No saline, no pain meds, no drinking liquids, no nausea med, NOTHING.  No one would give hubs the administrator's name or phone number but with a few phone calls he had the info. The guy was furious and wanted to know how hubs got his name and number - as if hubs was going to squeal on someone and get that person in trouble.  You could tell that that spouse of mine was very respectfully yet firmly, blowing the administer-on-call to smithereens, so much so that the guy hung up on him!  Hubs called him again and the guy wouldn't pick up the phone.  He wouldn't pick up when hubs called on my phone either. I will say no more....

For many reasons, the charge nurse knew of my hubs, for good reasons, nothing sinister.  She was quite helpful. My main nurse was helpful, as well as my "other" nurse. 

Funny: both of the CT Scan technicians remembered me from a few other visits. I was so sick then that my savant-like facial recognition abilities failed. I couldn't remember them at all, nor the ER visit, though I did find that I've posted about it!  But as one was rolling my bed back to my cubicle she said, "I hope they get to the bottom of all this, especially given how you were treated before."  Wow...!

The sigmoid colon hadn't twisted completely (thank God!), it was twisting and untwisting, back and forth. That, plus the gas building up, largely explained the pain, cramping, stabbing, etc.  

A CT scan w/ barium contrast was done, blood, urine.  The barium was delicious, of course. In the past few days I've had trouble swallowing one sip of water to take my meds.  So imagine how good the lemon flavored barium tasted. (I AM so pathetic, I know!) 

I'm in my hospital room now.  So far ok.  The nurse seems nice.  But boy, are we ever fodder for gossip!  I'm actually scared of seeing the GI despite the fact that we traveled in the same circle back when we actually got out and about back in the day.  He's also my daughter's local GI and he's been good to her.  I'm also worried that I've built up "Dr. Hunk" too much in my mind, afraid something bad will happen to their manners or any number of other things.

So, that's where things stand at the moment.  Again, my thanks go out to so many out there.  

And so too, as always, I hope everyone's feeling their very best, only better.  Caio and paka!

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"Don't Mess Around with the Pancreas"

I've heard from so many, asking me how and what I'm doing, so a quick report regarding my pancreatitis. ("Quick"? I said "quick"?  Huh! In our dreams, my lovelies!)

It's been nine weeks since I started fasting.  If I had any artistic talent at all, I'd make a chart of the events - I know a scorecard would be such a help!  And I do want to emphasize that there might be a tiny mistake here and there since I'm not doing my usual obsessive fact-checking.  Furthermore, my brain is having difficulty thinking (more so than the usual!) because of the pain, and because I'm HUNGRY!

I was diagnosed with pancreatitis almost three weeks ago now, though who knows how long I'd had it before diagnosis.  Within a 10-day period there were three runs to the ER. The last run showed pancreatitis on the CT Scan and blood work.  To illustrate the hostility, unprofessionalism, substandard care, being treated like a number rather than a person (although I think a number would have gotten better care) compounded by the curse that surrounds you if the words "Chronic Fatigue Syndrome" or "fibromyalgia" are seen in your chart, a recap.  Mind you, many of the "mistakes" were ones that any third year med student should know:

• I was never given a saline bag to hydrate me. (HUGE mistake!)
• An abysmally incomplete history was taken.
• Ignored were the signs of my fever of 103 degrees (high for a "normal" person, so imagine what it meant in my case because I normally run about 95 degrees) and a BP of 151/I-think 90 (whereas my "lying down" numbers are around 90/65-70).  My BP is all too often an indicator of my pain level.  Furthermore, I've run a BP over 125 only a handful of times, during hospitalizations.
• I was not given anything for pain. (A complicated story regarding this brews in the med literature so I've had to simplify this point.)
• No dietary advice was given.
• No other verbal instructions were given, only a dinky copy of what is pancreatitis. For more on this, please look at my previous post.
• I was told that my pancreatitis was like a "little flu."
• I was offered morphine but not allowed Demerol, despite 20+ years of hospital records showing that morphine does not touch my pain and only Demerol helps. (Another complicated issue that needs to be dealt with separately.)

So where am I now?  Thank heavens there is an Internet and thank goodness my rheumy has been available. I'm definitely doing worse, much worse.  This is what I've learned, in the most simplistic form:

• I discovered that my pancreatitis would NOT resolve itself in a few days. Anyone who has pancreatitis is in danger, but with MECFS, aka the DD, it's much more dangerous and complicated.  I'm learning this the hard way.
• I also discovered that I need to fast in order to rest my pancreas.  As I wrote in my last post, coincidentally I had started fasting on my own weeks before.  How much worse would it have been had I not started fasting?  I'm now on clear liquids only. We'll introduce juice after I am pain-free (or in much less pain).
• I am nauseated most of the time and need to take anti-nausea meds all too often.
• The pain is out the wazoo.  No more squeaky wheel gets the attention: everything is screaming out at me.  It encompasses various parts of my abdomen/torso, my back, my left arm/shoulder, the left chest area most of the time, my right side occasionally, the pelvic region, the back of my neck.  It often hurts to breathe.  It hurts to eat (I tried a few times last week, thinking I was doing better). It hurts to drink. 
• I continue to run fevers throughout the day.
• Except for those four days last week when I thought I could handle some food, I've been "fasting" for nine weeks now.

What is the pain like?  Well, it's a lot of different kinds of pain.  I'm beginning to think someone out there has a voodoo doll of me, having a heck of a lot of fun sticking it over and over again! ;)

It is severe cramping, as if someone is stabbing me with an ice pick over and over again. It's also as if someone is taking a chef's knife and twisting my guts.  It feels as if everything is inside out and I need to throw up my guts.  These are just a few examples of the various pains.  I feel a tiny bit better if I don't move at all.  I get a tiny bit better if I don't drink anything at all.  Finding a position to lie in is a challenge.

How bad is it getting?  Today I bent over and suddenly bile started flowing from my mouth. Talk about "freaking me out"!

I should most likely be in the hospital.  Thus far, however, via various means, I'm being treated at home because we cannot trust the hospitals any longer.  Most are aware of the expression/phenomenon known as "suicide by cop," thanks to TV shows such as "Blue Bloods."  I KNOW that were I admitted, it would be "suicide by hospital." 

There is a famous saying in medicine, taught to medical students and definitely first-year interns:  "Eat when you can, sleep when you can, but don't mess with the pancreas." (Usually another word, "sh*t," is used in place of "mess.")

Well, the ER staff must have remembered only a little bit regarding the pancreas.  And, unfortunately, they forgot the gist of the saying: that the pancreas needs help through use of resting the pancreas (diet and fasting); that the patient should be hydrated (saline bag); that the incredible pain needs to be dealt with (Demerol); that the patient needs help by way of medication (antibiotic).  None of these things were done for me.

Yes, I'm ticked off.  Really, not much makes me fear when I get "sicker."  Those who read my blog on a regular basis may remember that I never knew I suffered migraines since early childhood until I went blind in one eye (it lasted only a couple or so days) during my second pregnancy, a "migraine equivalent." (Hubs panicked: I thought it was funny!) I student-taught an entire quarter/semester with an infected appendix - this was going from the exploratory surgery table back to school in a week (and driving from New Jersey to Virginia, quite the distance!). I was so intent on getting my BA in a little more than three years (rather than the usual four) and nothing was going to stop me. (I thought it was gutsy, not stupid!)  Without fear I put off my much-needed gallbladder surgery for close to two years - because I didn't want to be incapacitated if my daughter needed me at the "major medical center."

But I'm scared now. 

And hungry!  There's gotta be an easier way to lose 32 pounds!

As always, I hope everyone's doing their very best - only better.  Ciao and paka.


(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)