Sage and Sass

Sage and sassy wanderings of a curious mind.

Welcome Back…or it really is good to be alive. November 10, 2011


Well, it has been awhile. I missed you dear blog o’mine. For anyone who has loyally followed my blog, I apologize for the lapse. Been a rough road the last few months. It began with a move across town. This was a good move, into our own place. As you know if you have followed along, I am a type I diabetic. 25+ yrs now. What you may not know is this. Diabetes sucks. Well ok, so you may know that but did you know it can go all wonky even if you are under perfect control, eat right, exercise and test your glucose faithfully? I have struggled with this the entire time I have been diabetic. It is exhausting, truly. Full time job. And here is the kicker, you can still become life threateningly ill, even when you do it all right. That is why it is so hard to stay on top of it, you feel like you get nowhere. Like it is “all for nawt” as me English Usband says. So I have, as you can imagine being the sassy girl I am, not always taken good care of it.
That has not been the case in the last year or so. Been on the wagon so to speak. Doing it all, pricking my finger 5 times a day. Eating my fruits and veggies, counting my carbs. Programming all the info into my insulin pump like a good little girl. And what happens? I wake up one morning with DKA. Are you freaking kidding me???
For those of you who are unfamiliar with DKA, click on the red DKA above and it will take you to the link. This is what happened. Apparently I had an infection of some sort, possibly sinus. Ironically, the one other time I had DKA, when I was 6 months pregnant with my first child, I also had a sinus infection.  Things that make you go hmm.  I went to bed with a slightly elevated glucose of 161. I dosed accordingly on my pump and went to bed. Sometime during the night my cannula, the filament that stays inside your body to deliver the insulin, became kinked. Therefore, no insulin was being administered to my body. This is not good.
When I woke up it was to vomiting bile, urgent urination and loose stools. All at the same time. I was a little loopy and had trouble figuring out what was going on. I thought originally that maybe I had food poisoning as I am prone to that, especially living in Az. Then, the 3 lovely symptoms continued every 20 minutes so I really had no time to clear my head and focus. Not that I really could by that time. I was pretty gone, logically speaking, shortly after waking. I am really not sure how I made it to the bathroom for each bout of puking. But I did my bumbling best. I checked glucose several times. Changed the cannula and even tried an injection, all while clutching the trash can tightly. Glucose would not come down. It was too late. So by the time my girls got home from school I was just laying down, getting up, puking, laying back down. Just sort of on auto pilot. I remember thinking, “don’t puke on the floor, it will suck to have to clean that up”. Weird where you’re brain goes in a crisis.  And also weird how many colors bile comes in.  Who knew?
So, then the girls came home and my brain shifted to, “I am ok, can’t freak out the girls”. Well luckily I have trained them well in all matters diabetic. I managed to fool them for awhile, not that I wanted to fool them mind you, I just was incapable of thinking clearly. Survival instincts really boil down to a basic level when your body is in DKA. Another problem is that I maintain a “normal” appearance even when I am deathly ill or in this case functioning with a glucose level in the high 400’s. Everyone said I was speaking clearly and acting fine. I have no recollection of this. Fortunately, the girl’s figured it out and called my dad and husband. By the time they arrived I was just coherent enough to know I could not go in a car to the ER and paramedics were called. It was a good call and may have made a huge difference in the outcome. So I spent 3 days and 2 nights at the lovely (it really is) University Hospital while they brought me back down safely. I did have a relapse of the puking a few days after being released but it was just some fall out and edema left over that was taken care of by a day of IV fluids. The entire experience was excruciatingly painful. There are a entire days I do not remember and some I wish I could forget.
Here is what I do remember. A panic like no panic I have ever felt before. It sounds so cheesy to say but I really did almost die. My husband got rather testy with me when I tried to laugh that off. And here’s the truth, I felt it. I knew I was on the edge of not being around anymore and it scared the hell out of me. I am not a fearful person. So this came as quite a shock. The thing is, I was not afraid of dying. I will gladly walk on over when it is my time. I was afraid of what would happen if I were to die right then.
I know this is not so strange a concept but it really put me in a loop I am having trouble getting out of. I clearly remember a burning desire to beg my husband and father to make sure the girls stayed put and continued on their awesome lives without me. Luckily I never said those things out loud to them, I do not like to upset people by freaking out. But it was such a strong need.
It lit a fire under me arse to get things in order for sure but it also shook some things loose in me. The problem is I am not sure what they are, where they come from or how to deal with them. I don’t seem to be able to leave the house without an enormous amount of anxiety and tears. I am not, or I should say I never was, much of a crier. Suck it up and breathe is my personal motto. Thing is, I can’t. I am also extremely proactive, I am the fix it person. I can’t. I have tried. Why is this happening? I don’t know. Mulled it over, talked about it, prayed, meditated, screamed, taken it apart with the husband and looked under the hood. Nothing. A big fat nothing.  I have decided to take action in the form of counseling. Waiting for the referral as we speak.
So what’s the point of all this? I just want you to see the importance of being prepared. Don’t put off those seriously important things like living wills, directives, saying I love you, hugs even at awkward times. The importance of truly living.  Go on that trip you’ve always wanted to go on. Take that class. Play with your children, goof off with your friends, steal away with your honey. Do it, do it all. Do it now. You never know…you just never know.
BTW, I am so appreciative of my life and all that is in it. There are no words expressive enough. Thank you God for the extra time. I promise to use it wisely.

Slainte’
~Sam

Advertisements
 

To weed or not to weed…or you’re thinking of doing what??? June 30, 2011


  I suffer from chronic pain.  It sucks.  It really sucks.  I have known many others that suffered but until it happens to you personally, you really have absolutely no comprehension whatsoever what it is like.  I admit it, I am guilty, in the past, of thinking, “OMG when do you not feel bad?”, upon slipping up and asking one of them how they are doing.  That doesn’t make me a bad person, it is is just so hard to understand what chronic really means.  When you are relatively healthy your experience with pain or sickness is fleeting.  You get an injury or the flu and you bide your time or take drugs that knock out the pain and before you know it you are up and running again.  That is your reality so you tend to think it is everyone else’s also. 

  And how bout those drugs?  Ah the wonderful world of prescription painkillers.  I hear people talk about them in various degrees of awe.  There’s the typical younger response of,  “Dude, I twisted my ankle but I got some killer painkillers.”  Then there’s the middle aged, “the doc gave me some pretty heavy duty pain killers but I will only take them if I have to.”  My personal mind boggling favorite, “I’ve been on them for years, couldn’t get thru the day without them, they are prescription so they are safe.”  Really???  Ummm, newsflash, no they aren’t.  Not knocking them, just saying…wise up.  If you can take them and they help you, awesome for you but do not presume that because a doctor writes you a prescription they are without consequence.

   I, personally, cannot take pain killers.  I have allergic reactions to 90% of everything docs prescribe for me.  Not exaggerating.  New docs will say, “oh no problem, everyone can take this one and we’ll start you on a low dose.  You won’t even know you are taking them.”  And then I spend 3 weeks having side effects that make me sicker than the original condition.  And the docs are always so shocked by this.  “But, EVERYONE can take this!”  Apparently not.   I absolutely love my current doc, BTW.

insulin pump

What neuropathy does

What is my condition?  I have type I or juvenile diabetes.  I am on an insulin pump.  Been on insulin over half my life and now suffer from peripheral, autonomic and poly neuropathy.  The pain can be annoying or excruciating with varying degrees in between.  But there is never a day without pain.  I have suffered several setbacks along my diabetes path, some pretty scary and painful but I always beat them.  I won, I came out on top and I never let it get me down for long.  Until about 3 yrs ago when my body just started going all willy nilly on me.  Without going into a bunch of detail you don’t want to hear I will hit the highlights.  It began with nausea that led to about 6 months of not being able to keep food down or blood sugars stable.  Around this time I also started having what they call “no symptom hypoglycemia”, pretty technical term there isn’t it?  I have always been very fortunate in that I always had strong symptoms when I was dropping too low.  I would even wake up if I dropped in the middle of the night.  Not so anymore.  Scary?  You betcha.  All of this led to having my gall bladder removed.  Which may not have been necessary.  Too late now. 

Having my gallbladder out did stop the nausea for a while.  But then about two years ago a whole new round of symptoms started kicking my butt.  Excruciating bouts of pain that would start with my whole body burning, then sensitivity to touch or clothing and then stabbing pain and then back to the sensitivity and burning and then back to normal.  These flare ups as I call them would last anywhere from 3 to 6 days and then I would have about 10 days before the next one hit.  Working was out of the question, I never knew when they would hit or how long they would last.  God bless my dear Usband!  Long story short, I now take Cymbalta to control the flare ups, which it does to a certain point.  While I no longer have the flare ups that completely grounded me, what I have instead is a constant version of it that never lets up.  Don’t get me wrong it is preferrable to the flare ups.  Oh and did I mention I have to take another med to protect my kidneys from the Cymbalta? 

  So this constant or chronic pain is what brings me to the title of this blog.  I can’t deal with this pain anymore.  I need some relief.  I need to be my old self or at least an older version of it.  I am not a cranky, miserable person.  I am a happy, spunky, pro-active, git her done person.  I am a hugger dammit!  Now I am limited to touching only when it will not cause me to shriek in pain.  And I am tired of it.  I am doing all I can do to correct, control and live with this and it is not enough.  I need relief.  I have tried everything recommended for the pain and nothing has helped.  And then I remembered…

  Once, in my early twenty’s I was having a pretty painful bout of pancreatitis.  It was bad.  The very dear friend whose couch I was crashing on at the time of this bout got sick of watching my suffering and all but forced me to smoke some weed.  I had no insurance at the time and no money, so I was screwed.  She convinced me to do it, didn’t take much convincing to be honest and much to my surprise and relief, the pain let up enough to let me sleep and go back to work the next day.  It was a miracle.  All was right in my world again.

  Now personally, I have always thought it was insane that pot is illegal when alcohol which is much more destructive, is not.  But that’s just me.  I am not getting into the debate over legalizing marijuana here.  I will state my opinion, it is natural, it is beneficial, I think it should be legal.  Read the history, it might surprise you.  However, I come from a very conservative, religious background.  And I believe in following the law.  When in Rome and all that.  So when the memory of the relief I got all those years ago popped back into my head recently, most likely due to the fact that Az is now a medical marijuana state, you can imagine I was torn. 

  To weed or not to weed?  That was the question.  The answer?  Weed, definitely.  It didn’t really take much thought.  It is legal in Az. now and my condition makes me a candidate.  Yea, yea there’s the whole federal issue still but, I want my life back.  So I talked it over with my Usband and our girl’s.  They were very supportive and on board with anything that would give me some relief.  Then I turned my attention to my folks.  I brought it up first just as a discussion, you know, “how bout that medical marijuana issue.”  Surprisingly my mom and dad didn’t have much of an opinion on it.  So I let them know I was considering it.  My mom laughed it off and said whatever works, I know you need something.  Dad was overly concerned with the controversy and possibility of being arrested federally.  I told him I was willing to risk it.  He didn’t like that. 

  Anyway I took the plunge, I got my medical records and went to a recommending doc.  I got my recommendation and now I am waiting for my card.  Now, since Arizona has the dispensaries on hold, I must decide whether to grow my own or use a “caregiver”.  I would like to grow my own just to ensure the organic part of it and all that but, I do not have a green thumb.  I kill weeds on accident, no pun intended.  Hmmmm, what to do, what to do…I am sure there will be more on this subject.  In the meantime, what is your opinion and or experience on this subject??? 

Inquiring minds want to know!

Slainte’   ~Sam        BTW, I really do recommend educating yourself.  No matter what your views.  Do not let a doctor or any health care person make decisions for you.  Know what you are taking, know the alternatives and be a responsible health care patient.  It’s important!

 

There is nothing wrong with your daughter, may I suggest a parenting class? June 25, 2011


In regards to the title of this blog, yes, I actually heard these words…more than once. These were not words I was expecting to hear, ever, in my lifetime. Not that I am opposed to parenting classes. I am a big believer in bettering yourself in all areas of life in whatever way you can find to do it. I also was not particularly offended…at first. The person delivering this advice was the third psychiatrist we were referred to by my 5 yr old daughter’s pediatrician. Yes, I really said 5 yr old.


I should go back a bit. My first pregnancy was incredibly difficult. I am a type I diabetic who decided to have children against my OB-GYN‘s advice. Being pregnant was a full-time job. Morning sickness was an under statement, I could not keep food down. Had to go on medication just to eat. I often wonder if this could be the source of my girl’s problems. But that is a subject for another day. My little bundle of joy arrived after 24 hours of labor, 3 of it with her head out. It was not a good scenario and we both came close to not surviving it. Another possible cause? “Was the child a result of a difficult pregnancy or childbirth” is one of the first question asked on a child’s psychiatric evaluation. Did you know that? I didn’t.

Anyway, we did survive, she was gorgeous and angelic. She slept through the night at 2 weeks old and I could not be happier. For exactly 4 months. At the end of that 4 months, it was like someone switched babies in the night. My quiet, delightful baby suddenly turned into a screaming, fit throwing, stubborn little being that I did not recognize. I know what you’re thinking, “welcome to parenthood, get over it.” But this was truly different. Still, I thought maybe I was over reacting so I consulted our pediatrician, a woman I will hold in high esteem for the rest of my life. She was sympathetic and really listened without belittling me. Not wanting to be quick to arrive at the wrong conclusion, she stayed in close contact with me and we began a diary of sorts to document changes and growth. This is, btw, an awesome tool for all new parents regardless of your child’s health.

Life continued in this way for quite sometime. I noted all the difficult things such as her refusal to sleep in a crib or playpen or anything even remotely confining except the snuggly that kept her plastered to me. I also noted  the amazing things such as pulling herself up to a standing position at 4 months old and walking at 9 months. My OB-Gyn’s response to this? “What do you expect when you give birth to a toddler?” She was 9 pounds, 8 ounces a month early and wore 9 month old clothes home from the hospital. This was another note of interest to the psychiatric world as well as the fact that she used her left hand and only her left hand from day one.  She was brilliant. She didn’t speak in baby talk. Didn’t speak at all until she could speak in sentences as a matter of fact, preferred pens to crayons and held a fork, not a spoon, in her hand and ate with it like an adult from the minute she could hold one. She was scary smart and we just thought that was so awesome. Turns out, it comes with it’s own set of problems.

The first time the pediatrician spoke the words, “I believe there is a problem with Tylie”, she was about 18 months old.   This proclamation came after a phone call made in desperation to the doc after hours. She had advised she thought Ty had behavioral problems and we should try to squelch them now rather than later. This was done with exercises like putting her in the crib and letting her cry it out until she learned and accepted that was where sleep was happening. My child was not having it, none of it. Now I am not a wimpy parent. I believe it is my job, not a friendship and I take it seriously. This does not mean I do not adore, spoil and cherish my kids (yes I had another one much to the chagrin of my OB-GYN. He swears all his grey hair is my fault). It means I am capable of any and all discipline required to give my child the best possible life they can have.

Here comes the kicker, I did what the doc said. I put her in the crib. I loved her up, kissed her goodnight and told her to lay down and sleep. She looked at me as if I had lost my mind, shook her head “no’ and giggled. I am not kidding. I walked out of the room. It took her approximately 10 seconds to decide her course of action. She then threw her sippy cup out the door and began screaming. I was prepared for this. This was the routine. I was determined, encouraged by the doc that I could do this, that she would get tired and fall asleep. Really? She didn’t. Two hours later, remember, I was desperate by this time to stop the fits, she was still going strong. I was not. I was a tear soaked (mine not hers, she didn’t have many at all) nervous mess. I called the doc, held the phone out and said between hiccups,” ?!?”  She listened to the screaming for what seemed an eternity.  The first thing she said was “put the phone down and go get her so you can both calm down, I’ll wait on the line.” Then she delivered the words that would forever change our lives. The ones no parent ever wants to hear, my child had a problem and it wasn’t gonna be simple to fix.

My heart did all kinds of flips. The round of emotions was so vast. Fear, anxiety, relief. I didn’t know how to react. However, I am nothing if not proactive. I am a fixer. I high tailed it straight on to the path of knowledge. Thus began our journey that led to the words in the title. The first time I heard these words, I knew there was some sort of mistake.  They were missing something.  This had nothing to do with my parenting, did it?  I was so tired, and weary I did everything they asked, short of the actual class, because by this time, Ty was 4 and instead of lessening, her fits had gotten worse.  She ate only organic healthy food, she was on a regular schedule, she had equal amounts of discipline and freedom.  But no amount of discipline, giving in or loving could stop this child once she was upset about something.  It was exhausting trying to be the “perfect” parent.  Which is why, by the time she was 5, the 3rd psychiatrist to tell me that I was the problem got an earful of colorful words describing what he could do with his parenting class and his degree.  It was not one of my finer moments.

Even my parents thought I was losing it.  You see, Tyler was the most amazing, charming, and beautiful child I have ever laid eyes on.  I am not the only one who thought so either.  Did you see the photos above???  She charmed everyone.  The bottom line, lest this turn into a book instead of a blog is this…there was a problem with my daughter.  She is bi-polar.  That is not what she was diagnosed with back then.  We had to go through many trials and labels before getting down to the nitty gritty.  Actually she just had to be older.  Instead of having one label she had to carry 3 around.  OCD, ODD and Anxiety.  Back in the early 2000’s doctors were unwilling to diagnose young children with anything remotely like bi-polar.  I had seen my bi-polar niece go through enough bad times to know that if something like that was the problem with my child, then by God I was gonna get a handle on it sooner than later.

                 

I am pleased to say that my stubborn nature as well as Tyler’s, paid off.  As a result of plodding on until we found the right combination of counselor and psychiatrist and many heart breaking situations and yes, even medications, we conquered the problems.  Are they gone completely?  No.  Will she have to battle the condition the rest of her life?  Yes.  But here’s the deal, she does battle it, every day, she does it.  We help her, but she is ultimately the one responsible now that she is older, for keeping it under control and managing it.  And she does a fantastic job.  I am so in awe of her every day.  People who meet her today cannot tell at all that she deals with a life altering condition every day.  She is amazing.

Oh and the psychiatric world is now considering the possibility that treating younger children showing symptoms early may even be a good thing.  Huh, really?  I like to think we had a part in that.  I also like to think I am partly responsible for the way Ty handles herself.  She is ultimately the one who deserves the praise though, she inspires me daily.  So what’s the moral of this story?  Never give up on something you know with every fiber of your being…no matter who is telling you that you are wrong.  Sometimes we parents, or patients depending on the situation, DO know a thing or two.  Maybe even three.  Oh, did you know that bi-polar is hereditary?  Me neither…

I love you bug!  Keep up the good work!  I am so proud of you!  And to all of you reading this…didn’t I tell ya she was gorgeous?

Slainte’  ~Sam