Know someone with a chronic illness? March 2, 2011

Through a strange sequence of events, I guess none more strange than my “usual” life though, I started thinking about the differences of perception with regard to different illness types.  There are the run-of-the mill illnesses:  colds, stomach bugs, things like that.  There are the “Oh Man!  This person is sick!” illnesses:  pneumonia, bronchitis – illnesses where casseroles are rushed to the rescue, kids are taken care of and a sense of “volunteerism” really kicks in.  There are terminal illnesses – ones too awful to talk about – where everyone feels this sense of urgency to visit the person, lest their passing go without one last talk, one last “I love you”, one last hug.  Then there are chronic illnesses:  the “oh yeah, that person is always sick, they have . . . ” illnesses.  They are the illnesses that are the easiest to ignore.  The person isn’t “out of the blue mildly sick”, they’re not in dire need of help, they aren’t going to keel over anytime soon that you know of, and for reasons beyond my comprehension, they are the people who tend to just “suck it up” and realize that this is how their life is and deal with it.

This may sound like a “pity party” and that may be what it is.  Then again, host a pity party and see how many people attend!  I would like for this to be more of a “wake-up call” to those who have friends and family who have chronic illnesses.  I would like for you to know – at least from THIS patient’s perspective – what people with chronic illnesses often need and want.  Surprisingly, it isn’t much.

I was in the Emergency Room the other night.  My husband helped me get into the traditional “hospital garb” because I was really struggling.  As I’m lying on the gurney in one of the two-three rooms they reserve for “critical” patients, I’m scared.  Really scared.  Having been sick for over 8 years now, I have become very stoic about it.  Joking puts everyone at ease, and it makes me convince myself that nothing is going to happen to me.  I also put on my “medical practitioner” cap, stating things in very objective manner.  It then makes me a “condition” rather than “a person who may have just had a stroke.”

Then the thing that sucks me right back into reality hits:  my son walks through the door and curtains, worried look on his face somewhat masked by a smile.  He says, “Hey Momma.  How are ya?”  BOOM.  I’m human again.  I am a human being with real feelings, with real fears, and with a heck of a lot of illnesses that are pretty threatening.  I remember that I really AM fighting for my life here, and I see his face – back and forth from his childhood to the man standing there – and I once again understand why I fight so damned hard.

As the night went on, I was given medication for the seizures that I had evidently been having continually.  Then, I was given medication for a headache – after I had asked for Advil – but it was something incredibly strong and it was through an IV port.  It knocked me for a loop.  A HUGE loop.  I couldn’t stay coherent enough, “awake” enough, to remember to breathe.  If this didn’t change, I was left with two medical interventions, neither of which sounded very pleasant.  Also, once ventilated, you’re stuck in that hospital for AT LEAST two additional days.

As I’m lying there, I feel a tapping on my right hand.  “Momma — MOMMA — wake up.  You need to breathe.”  I don’t know how long this went on, my husband on my left side, “Honey — come on, wake up — you have to breathe.  Come on, take a deep breath,” and my son on my right side.  As they held my hands, I realized that quite often more than anything the thing that people with chronic illnesses need most is human touch.

In October of 2008, when my son drove me to the Outer Banks to meet several friends, I ended up having some very severe seizures.  One night, in particular, I remember that I was lying in bed, and my best friend in the world was lying right beside me.  Brandon was lying beside her.  There were times that one or the other would reach out and just put a hand on me – reassurement that I was okay and that I was not alone.  There were times that something was said – maybe a joke – and a hug accompanied it.  More affirmation that I am a human being with an illness.  I exist.

What can you do that would help someone with a chronic illness the most?  Surprisingly, it’s not clean their house, make them food — any of the things that you would immediately think to do.  It is sit with them.  Not in a chair BY them, but WITH them.  Lie down with them.  Fully clothed or whatever.  It doesn’t matter whether your friend or family, male or female.  It is not a sexual experience.  It is a healing experience. 

Ask the person if they would like to be held.  Some do, some don’t.  Sometimes they just want to lie beside you with their head on your shoulder.  Sometimes they want your arms around them, holding them so that they know metaphorically that you will catch them if they fall.  Sometimes all it takes is placing your hand on their arm. 

Touch deprivation is a pretty devastating but often ignored aspect of chronic illness.  Someone who has been out in the world for the vast majority of their life is “sequestered”, living a life with no human exposure.  Touch has an amazing healing ability – far more than most would think.  Touch lets you know that you DO exist because you can FEEL it.

If you know someone who has a chronic illness, possibly the best advice you can receive regarding what they need comes from an old commercial:  “Reach out and touch someone.”

Feeling Alive . . . January 29, 2011

What does it take for you to feel alive?  Does it take adventure – cliff diving, bungee jumping, things that literally push you to the brink and provide a massive dose of adrenaline?  Does it take being out in a large crowd of people, dancing, laughing, living it up?  Have you ever really thought, “What makes you feel alive”?

I hadn’t.  After being quite sick for a while, you get used to the numbness that something like this brings.  You learn to hide your feelings from others, because no one wants to be around a whiner.  No one wants to hear you drone on about each individual thing.  I have an acquaintance who does that and it drives me CRAZY – and she isn’t sick!  More than anything, you learn to hide your feelings from yourself, lest they become dangerous.  After a period of time, you learn that recognizing your feelings means having to examine them, come to grips with them and think about what the effect on your life they are having.  Once those are out, it’s kind of like letting the Genie out of the lamp . . . they’re out there and they’re not going back.  Yikes.  Scary stuff.

In the past six weeks, I’ve had the opportunity (misfortune?) to examine what feeling alive means to me.   It’s remarkably different from what it was before I was sick.  I’m sure, if you’re reading this, you’re shocked!  (Sarcasm implied)  I used to feel alive when I was in my car, top down, sun beaming down on me, hair blowing in the wind driving on the highway (probably too fast) to somewhere.  Or white water rafting.  Or going to the gun range and nailing my targets.  Things that I did that made me feel alive.

Last night I started thinking about this and I realized that has changed, and I really don’t like it.  Somehow, I let myself be at the mercy of others to feel alive.  I understand how it happened, and it is perfectly rational that it would happen, but I don’t like it at all.  I have become so desensitized and so numb.  I don’t WANT to think about what feeling alive feels like, because it is addictive.  When you begin to view yourself as the burden that you are, the precious things that happen in your life that make you feel alive are the things you never want to end.  But they are moments, and moments by definition don’t particularly last very long.

The moments that do happen that make me feel alive I now replay in my head – over and over – savoring the memories.  Things that most people take so for granted.  An ongoing facebook discussion with my son about this band that we both think is just fantastic.  Even though I feel secure he will read this, I will disclose:  I read that on his page every day.  It’s goofy, I know.  But it gives me a sense of being so in touch with him, so alive.  I replay in my head the things my granddaughter has said to me, the ridiculous way we play when I get to see her, and that infectious laugh she has because when I am with her, I am alive.  And I replay conversations with my friends, things we have said, our sarcastic banter, secrets we have shared, events we have laughed about and cried about — the knowledge that in some way I am wanted, that I serve a role in their lives — however insignificant —  it makes me feel alive.

I never considered myself all that “important”.  I’m not Mother Theresa, I haven’t written the “next greatest novel”, I haven’t developed a cure for cancer.  But there was a time in my life during which I had some significance.  My existence made a difference, however small, at least.  I think that is an inherent need that almost everyone has.  They need to know that they are here for a reason.  When anything that resembles a reason gets pulled out from under you, it is an emptiness that only someone who has been there can know.

In the past six weeks or so, I’ve had the occasion to feel alive.  I’ve been given the gift of knowing that I was wanted, needed – by a different number of people in my life.  It has been such a “heady” experience.  They have been moments, but what incredible moments they have been.  It’s reliving those memories, repeatedly right now, that is keeping me feel alive.  The upside – and maybe the downside – of this is that I want more of these moments.   This feels good.

And all is good(?) January 17, 2011

We had my nephew’s birthday celebration last night at a restaurant that I was able to eat safely at.  Because I have had so many ‘comments’ made about me not being at celebrations, I always feel guilty when I say that I can’t go.  The reality is that in order to get to the restaurant by 6:30, I had to start getting ready at noon.  That is a lot of time and a lot of effort that no one realizes it takes me because no one really knows what my life is like.

That isn’t to say, though, that I didn’t REALLY want to be there, because I did.  My nephew is one of the very few who I think tries very hard to understand what I go through.  He immediately is there to help me if he thinks I’m going to fall or if I’m having trouble walking, when I sit down, he holds my chair for me, and he actually ASKS, “Aunt Lynne, how ARE you?”

Right now I’m really sick.  The medication that I’m on is wreaking havoc on my gut.  I was able to keep down some brown rice and that was about it.  I had already instructed my husband, though, that from here on in, there will not be an answer other than “I’m fine” or “I’m okay” (“she’s fine”, “she’s okay” if he answers) when someone asks how I am.  Period.  I’m finished with trying to impart some sense of what is happening to me to people who really, in the overall scheme of things, don’t care.  It’s the grown-up version of “don’t cause trouble”.

What these same people don’t know, either, is that I couldn’t walk to the bathroom today without help.  The joint destruction from the Rheumatoid Arthritis at this point sounds as bad as it feels.  With each loud crack, crunch or pop, my husband would ask me, “What just did that?” in order to know which joints were being affected the worst today.  Pain was the specialty on the menu today, along with swollen, red, angry joints.  Because my RA was brought on by Lyme disease – and I am still undergoing active treatment for that as well as the co-infections, I am – and will probably never be – a candidate for “traditional” RA medication.  I basically have learned to live with it, and to close off the portion of my brain that actually feels pain.  It seems to have worked to a larger degree.

I was the perfect “family member” last night.  No mention of me, no mention of my medicine, no mention of the vomiting and diarrhea that has plagued me for days.  Actually, no mention of pretty much anything about me.  Everyone liked it that way, too.  Everyone’s needs got met – as they each told things and shared things.  I guess the person whose needs didn’t get met were mine – and my husband’s.  When we got in the car, I asked my husband, “How did I do?”  He said, “Fantastic.”  We both gave the “knowing” look of “Do you believe that in order to fit into my own family I am going to have to live in their fantasy world where I’m “fine”.

Fine.  If you ask Steven Tyler what it means, he will tell you F*cked up, Insecure, Neurotic and Emotional.  Actually, that’s what my family thinks I am when I’m NOT fine!  So, for all intents and purposes, I’m fine.  It makes me furious, but more than that, it makes me so incredibly hurt.  And sad.  Because this week, I will spend the week again in bed, trying to recover from one evening out.  Trying to get my joints to calm down, trying to get my stomach somehow back on track, and all the while wondering if there is any additional mold in our apartment that needs removal – another subject on which I could write an entire PAGE of blogging.

I’m exhausted.  I can’t sleep right now, though, because I spent the entire DAY sleeping.  So I rest.  And think.  Therein lies the danger once again.  It’s a shame that once you’re diagnosed with an entire smorgasbord of long-term illnesses that they can’t give you Novocaine for your feelings.  If they did get hurt, you couldn’t tell.  Anti-depressants are very common-place in patients who have the kinds of things I have, and I am on them.  They make me not want to just take every pill that’s in the house and drift off to sleep, but they don’t stop my feelings from being so hurt.  It would be nice if they could do that, as well.  Unfortunately, I don’t think that there is anything that is either legal nor healthy for you that accomplishes that.  A lot of people try a lot of things in order to get there.  From what I understand, it doesn’t work for them, either.

So, I will continue on my path, “fine” as I am.  Wish me luck.  I have a feeling I’m going to need it.

Well, it happened . . . January 7, 2011

I think this is a good venue for my writing.  No one reads it and I can pretty much say exactly what I want.  I like that.  On the off-hand chance that someone does read it, so be it.  They’ll just be a little more informed about the events (or lack of them) in my life.

I had the opportunity to go to the grocery the other night.  I spent an entire three hours there.  I had to ride in that damned cart thing-y because the attorney never arranged for me to get new wheels for my chair and we sure as hell can’t afford $9,500 for wheels.  Seems as though I’m screwed for life if I actually want to go to the mall – or anywhere else for that matter – by myself.  Seems as though that is just the way my life is sometimes.

I finally got – for Christmas, no less – the straw that broke the camel’s back.  The one family member I respect the most told me that “I focus on my illness for attention, that attention is my addiction, and if someone didn’t know I was really sick, they would think I had Munchausen’s.”  MUNCHAUSEN’S?  Gulp.  I didn’t realize I was that much of a hypochondriac.  I didn’t realize that I make up things that are bad about my health so that people will listen to me.  I didn’t know that I could make my blood pressure go down to 80/40 in order to gain attention.  I must have some incredible control over this body of mine.

My “illness”?  Should I hand him a list of the four primary tick diseases, the autoimmune “watershed” of diseases I got, then the syndromes that developed from those, not to mention what happened because of the toxic mold that was in our house and what they have done to me?  Should I hand him a list of my medications – some every day, some just in case, and some I just can’t afford to purchase in order to get me better?  My illness.  Six years of being misdiagnosed, six years of developing every damned thing I can think of — and some I couldn’t imagine – all lumped into one category:  my illness.

This same person – this same loved one who I thought understood that it now hurts to be touched because my body is so NOT used to being touched, that I’m afraid to disclose to people everything that is happening to me medically, that I try to just LISTEN to people because that is what they really want – really pulled the rug out from under me this time.  This person knows – or at least I thought they knew – how incredibly empty my life is.  I don’t have the same things to talk about with them that I used to.  I don’t have the same things to talk about with anyone, because I don’t have any real experiences.

I go nowhere.  I lie in bed in a small bedroom all day, waiting for some type of human contact.  The only way I talk with a human being is if I initiate the phone call.  I spend my day talking to three dogs.  When my husband comes home at night, he has to take the dogs out for their walks, feed them and for the time being get their medicine.  Then he has to warm up something for him — sometimes me, if I’m hungry — for dinner.  Then he can sit down and talk with me for awhile about his day. 

His day.  You see, in my day, nothing happens.  I can tell him something funny the dogs did, something funny I read on-line or something I watched on television.  I can’t tell him about anything that happened while I was out, anyone I met, something that happened at MY work — because MY work slowed to a grinding permanent halt and now is only to get well.  After that, it will be to try to gain a little more function.  So I listen and I imagine that I was there when he tells me about his day.

I live vicariously.  I live through other peoples’ lives, because on a day to day basis I have no life of my own that is worth considering.  I have an occasional “burst” of human contact – and it is indescribably wonderful – but I have no consistent means of human contact other than my husband.  He understands this, thank goodness.  He also knows how incredibly hard it is for me after the life I used to lead — and still miss.

With regard to what I was told about myself, here’s the rub:  when I talk with people, yes I may mention something that is happening medically with me.  But in reality, there is NO ONE — and I literally mean NO ONE who knows exactly what is happening with regard to my medical condition.  They don’t know how I feel, what has happened in the last days, weeks or months, that I have yet another broken bone – nothing.  Even my husband. 

I have become a chameleon.  I am on facebook quite a bit.  I joke, I make comments, I empathize with people and they have NO IDEA what is on the other side of this keyboard.  I tell my nurse that I have fought too hard for too long to give up, when I continually debate whether my life is actually worth keeping the port in so that I can resume killing the things that are killing me.  I hide what is happening to me even to my nurse!  The reason I do this?  (This is almost the funny part)  I don’t want people to think I complain.  Ironic, isn’t it?

Then I start thinking, which is dangerous for me.  I then wonder, who would know when I’m gone?  How long would it take for someone to say, “I haven’t heard from Lynne lately, have you?”  Dave has strict instructions that I am to be cremated and NO ONE is to be told when I die.  There is to be no posting in the newspaper, no memorial — nothing.  If no one misses me when I’m alive, what the hell good is it going to do to have a memorial so they can look at a box of ashes and say they miss me?  They don’t.  If they did, they would have done something about it while I was alive.

In case you’re wondering, yes I am on antidepressants.   Yes, they are working.  No, this is not depression-writing.  This is my life.  One that is lived in a small room with the blinds closed and occasionally the television on.  One that watches on-line as the people she knows and loves go about their lives and have adventures that she can only crave.  One that only exists for the most part, that has an exciting “happening” once every few months, but one that can SURELY be replaced and almost never be missed.

My illness.  Now I know that no one understands.

. . . So tired of politics December 8, 2010

It makes me sick (no pun intended) that you can’t even have an ILLNESS without it being a political debate.  Articles abound regarding the treatment of Chronic Lyme.  Of course, few – if any – mention the co-infections you usually get with it, along with the autoimmune diseases you develop as a result of physicians with cranio-rectal inversion who would rather stay that way than actually attempt to LEARN something.  As most of us know — THEY ALREADY KNOW IT ALL . . . WHY LEARN ANY MORE?

I haven’t posted in months.  I have been just too sick to do that.  The house that we found and were so excited about — because the builder would finance?  Brand new and infested with mold.  Aspergillis, among a huge list of others.  The mold spore count was three times what would make a “normal, healthy” person symptomatic.  You see, not only does Lyme disease (borreliosis, borrelia) make you SICK, it also makes your body susceptible to anything out there that decides to invade it, as well.  When a builder – whose son proclaims “I AM A PROFESSIONAL” when he tells you that he knows all about mold (from an article that my husband and I gave him regarding mold remediation and when it is better to just say “uncle” and resort to demolition) and “THERE ISN’T ANY MOLD IN THIS HOUSE.”  Hey genius, ALL houses have mold . . . it’s just to what extent and to what ratio to the outside air that it contains.

My husband went to a new primary care physician yesterday.  Our PCP flew the coop from the practice and decided to become a staff MD for a nursing home.  My husband was actually ENCOURAGED because he started talking with this doctor about me.  This doc said that he had actually treated patients for Lyme disease despite their having a negative test because they were just SO SYMPTOMATIC.  My husband told him that a nurse practitioner who I have known for YEARS dumped me because the treatment I am receiving is “too unconventional, too controversial and she just can’t be involved in my healthcare.”  Thankfully, this doctor understands the concept of being a “back-up” physician.  He said, “Well, I’M not going to be the one prescribing the treatment — I’m just here in case she develops something else, right?”  My husband said something like, “exactly.”  The doctor just didn’t see the problem with that . . . THANK GOODNESS.

I know everyone has heard the saying, but it is true:  I am sick and tired of being sick and tired.  Not to mention the joint pain, the pain from the adhesions following the surgeries I have had to have recently (to have one port removed, a new one inserted on the other side, then a three-lumpectomy with biopsy surgical procedure on the right breast), and the fact that the new port is almost IMPOSSIBLE to access because the silicone access pad is the size of a pencil eraser.  Try having someone throw a dart at your chest — just up at the top — and have it stick in there.  That’s what it’s like when there’s a miss.  The needle is the diameter of a dart tip, and it is 1″ long.  Having that happen three times in an evening is NOT what I would call my idea of fun.  Maybe someone ought to take some of the people arguing against treatment for Chronic Lyme and plug them a time or two or three and see if they think we do this for the Hell of it.  No, actually, we do it to get fluids when we’re too sick and weak to ingest anything, parenteral nutrition, and medication.  Somehow, explaining this to a physician who doesn’t “get it” is next to impossible.

Legislators don’t want to tax the insurance system — so they have some pretty unreliable sources citing VERY unreliable statistics in order to pander to that system.  I would really like for a group of those physicians who are cow-towing to the legislators to go hiking in the White Mountains in New Hampshire — say, around the first or second week of October — and come home only to develop a bizarre “flu” . . . no tick seen, no “bulls-eye rash”, because IT WAS IN YOUR SCALP.  Then I want them to develop — over the course of years — the same things I have, one at a time, all the while having their colleagues sit them down and condescendingly tell them that “your mind can unwittingly cause your body to develop tremendous symptoms” . . .

I am college educated.  I took my Gross Anatomy, Physiology and Pathology classes at the Medical School with up-and-coming physicians.  I took more differential diagnosis classes than I can count – because our state is a “direct access” state, meaning that if someone wants Physical Therapy, they don’t need a prescription from their physician.  They can go straight to the Physical Therapist.  For that very reason, you DAMNED sure better have excellent differential diagnostic skills, and you had better have an excellent malpractice liability insurance policy.  Physical Therapists are potential “deep pockets” here.

Oddly, while we have to be responsible for all this, we can’t make a medical diagnosis.  We can only give a “Physical Therapy Diagnosis” that may — or may not — be accepted by a physician.  So when I found my sister’s brain tumor because of her symptoms, a fourteen year old’s blood clot in his leg after surgery (and immediately after his follow-up with his orthopedic surgeon), an older man who was having a heart attack — right in front of me — oh, and yeah, a patient WITH LYME DISEASE because I not only saw the bite, but the tick when she came back from hiking?  I could document “patient presents with . . . ” and write what I saw, tested, etc.  — then in my “assessment” portion I could write, “Question (whatever it was I thought they might have)”.  My plan?  Send them to the doctor.  Usually BACK to the doctor that sent them to me.  Maybe they would get diagnosed correctly — but because they were usually sent to me by that physician (because they didn’t know they didn’t need a prescription to see me) — they weren’t.  I got yelled at a lot by physicians when they found out they had screwed up.  They don’t like it when a lowly Physical Therapist does their job for them.  Makes them look bad.

Most of my physicians hated me while I was trying to figure out what was wrong with me.  I forced them to work.  Tsk tsk.  Heaven forbid they would actually have to RESEARCH something.  I even gave the physicians — handed it to them personally — printed research material.  Not the generic “I found this somewhere on the internet-” type of research, but MEDICAL RESEARCH – valid, replicable research – found in noted, respected medical journals.  It was generally placed on the counter and I’m sure in the trash after I left the room.

Having these diseases isn’t for the faint of heart.  It certainly isn’t for anyone who isn’t willing to fight with everything they have to keep living.  The reason?  If you DON’T fight that hard, you WON’T live.  That’s just kind of the harsh reality of the situation.  The list of symptoms I have – and the list of objective SIGNS (on MRI, etc.) I have is so extensive it would take pages to post.  On the days that I can get up and move – I do what I can.  On the days that my body literally won’t let me?  I lie in bed and hope that I don’t have to go to the bathroom too many times until my husband gets home from work.  On the days that I’m seizure prone?  In between seizures, I pray that I won’t die during one of them and my husband will come home to a wife who is no longer living.

Living.  Interesting word.  Maybe I should have said “existing”, because right now, that is only what I am doing.  Living happens when you get to enjoy it.  Existing happens when you are too exhausted, too symptomatic and too prone to seizures to actually enjoy your existence.  Two weeks.  Give the legislators two weeks living like this.  I’d give you dollars to doughnuts that they would change their minds about whether or not they “deserve” to be treated — given the treatment they need, covered by insurance — in order to continue living.

Recently the Chicago Tribune published a disappointing article titled “Chronic Lyme disease: A dubious diagnosis.” From the beginning of the article you can tell that the writer is biased. It is not a balanced piece of investigative reporting at all. Not only that, many facts are entirely wrong, or irrelevant. Here’s the article: http://www.chicagotribune.com/health/ct-met-chronic-lyme-disease-20101207,0,5671843.story?page=1&track=rss

Is this a rant? You betcha.  Am I furious?  Absolutely.  Will my opinion change those of the doctors and legislators trying to stop treatment of my diseases?  Probably not.  But then again, when the media equates treating Chronic Lyme with an obscure treatment using Deer Antlers for ALS, they just promote the cranio-rectal inversion that is so pervasive within our medical community.

Life Decisions — Good Ones August 12, 2010

When I knew that I was dying — really KNEW it — I had written letters that my husband agreed to send after my death to my friends, thanking them for all of the things they had meant to me during the course of my life. Some were to friends that were such an integral part of my being at the time – and knew, also, that barring something miraculous happening – my life on this earth was going to be rather short. Some were to friends that, while we had kept in touch, really did not know the extent to which I had become ill.

Then there was the third group of friends: The ones that I had, for various reasons, not been in contact with for a very long period of time. With some of these people, it was simply because time and situations had caused us to drift apart, slowly, just as the waves in the sea cause things to drift away. For others, it was because of a break-up, a fight, or a “discommunication” if you will.  I think perhaps the latter of those were the hardest to write. Lamentations are often very bittersweet, and I found that the sweetness that I felt in my heart for that person was probably overwhelmed by the bitterness they felt toward me. Please understand: this bitterness was (or would have been) justified. The feelings these people had toward me — if they had those particular type — were justified.

What do you write to these people, though, when you know you don’t have time to talk with each one, explain WHY you did WHAT you did and ask for their forgiveness?  In retrospect, the letters seem somewhat ridiculous.  It’s as if I was saying, “Hey — I’m dead.  Sorry I was such a jerk.  I hope you can forgive me, but if you want to spit on my grave, I wouldn’t blame you.”  I did the best I could with what I had at the time, and I wrote each note individually and from the heart, but it still somehow seems almost shallow.

I decided that since I actually WAS granted a chance to continue life on this earth, that I needed to make things right with the people who I had those types of relationship endings with.  We’re not talking about numbers in the hundreds, or even tens — just a few that I knew I just didn’t feel right about how they ended.  Let me tell you, for a non-confrontational wimp like me, the letters would have been easier!

Then again, when you DO get a “do-over”, you’d darned skippy better do it over the right way!  So, when looking for names, addresses — whatever I can find — when I DO find it, the conversation usually starts in the form of an email or a message.  The heading:  “An apology ____ years too late.”  Within the context of the message I let the person know the reason I did what I did, but also acknowledge that in no way was it an excuse for my behavior.  Then I ask if it would be okay if I contacted them to apologize “in person” sort of — over the phone, usually.

It has been quite a challenge.  I have found that it is not for the faint of heart.  What I have also found is that, when you pour out the contents of your heart with truth and sincerity, sincere forgiveness is usually granted.  I’m sure I will come across a hold-out.  I will not judge, and I will try not to judge myself too harshly.  Forgiveness can sometimes be a pretty difficult gift to give — particularly when the “asker” has waited a long time to ask.

I was fortunate again yet today.  Someone who was very dear to me — and an integral part of my youth — was told years ago by someone words that I had never uttered.  The words that were told to them were sharp, mean-spirited and did not hold one grain of truth within them.  Back then, I REALLY didn’t have the, ummm, “cojones” to go to this person, tell them what REALLY happened and what was REALLY said, so I let it go.  For more than 32 years.  How sad.

Once again, I was blessed with the gift of forgiveness.  I was glad to hear that this person has led a wonderful life, has enjoyed an incredibly fulfilling, long-standing marriage, has two children of which they are so proud – and still continues to be the same person I knew so fondly “way back when”.  While I have made some pretty ridiculous decisions in my life, and some down-right poor ones, too, I am really giddy-glad that I am making these life decisions.  I am also so grateful that my apologies have been accepted and that I have gotten to and may continue to get to incorporate these incredible people back into my life. 

LIFE IS GOOD!

Life is good . . . August 5, 2010

I had surgery yesterday.  It was to replace the port that was dislodging in the right side of my heart and implant a new one into the left side.  I have to admit, I was actually scared about this one.

My surgeon is this very soft-spoken, but very dry sense of humor- funny kind of guy.  While HIS records were correct – and the letter he wrote to my primary care physician was correct, the HOSPITAL’S records were not.  The hospital reversed which side was having what.  It took quite a while for the nurse to get the medical records people to change it to the correct procedures.

When the nurse and I told my surgeon about this – and I asked if I needed to write in sharpie marker “Remove this one” on the right and “Put new one here” on the left, he just got this grin on his face.  He said that as he was driving in to the hospital, he heard on the radio that there was an orthopedic surgeon that was going to perform surgery on a man’s ankle.  It was his RIGHT ankle that was to have the procedure.  The surgeon’s marking?  On the right ankle he wrote “correct”.  On the left ankle he wrote “malpractice”.  I laughed out loud!  My surgeon was giving us his usual very gentle smile and soft chortle that he does.  He said that some people were outraged by it.  Then he said, “Some people just don’t have a sense of humor, I guess.”

I thought it was so funny – and ironic – that a thoracic surgeon who performs some really SERIOUS surgical procedures – could give a little chortle about a surgeon who has enough of a sense of humor to write something like that on his patient.  I also found it really reassuring that the person who was going to be cutting into me — on both sides of my chest would come into my room and lighten it with a story like that.  He knew I was nervous – this was much different than the first time he “cut into” me – and he knew that I use humor as a means to deal with anxiety.

This was no “quick and easy” fix I was undergoing.   My surgeon had to insert a new port into the other side of my chest, cutting second vein that goes directly into my heart and suturing the catheters into those ends.  When he was sure that this was working correctly and that there were no difficulties with it, he then had to remove the port that began NOT to work on the other side of my chest.  After that, he had to re-attach the ends of the first vein going into my heart that had previously been cut to accommodate the catheters for THAT port.  I had spent a significant portion of the time between “this needs to be done now” until the surgery (only a few days) thinking about the potential for a significant number of things to go wrong.  The longer I thought about it, of course, the longer the list became!

And yet, in walks this thin, quiet man into my pre-op and post-op room, smiling as he asks me how I am – knowing I am nervous but already under the influence of some pretty soothing medication (!) and tells me something that funny.  I doubt this man told everyone that story.  He tends to “read” people really well.  He also knows what to say at the right time.

When the surgery was over, he came in and told my husband, my mother and me (I was goofy/groggy!) that it was successful, and told my husband and mother the limitations I would have over the  course of whatever time he told them.  I didn’t write it down, so I really don’t remember it (LOL – see previous post)!  Then he told me when to make an appointment for a follow-up – and again I don’t remember the time frame – patted me on the arm, told me to take care of myself and went on to scrub up to help yet another person.

I participated in a group session of success love now last night with my husband.  it is done through a conference call with individuals all over the country.  I wasn’t at the top of my game, to say the least.   The amount of healing love I felt during those two hours, and the amount of insight I got into the struggles the other group members are having – and the love that was pouring forth toward them as they shared as well was incredible.

Afterward, I thought how ironic my day had been:  I started it out incredibly frightened, then laughing and reassured, then relieved and ready to heal, and finally receiving and witnessing such amazing healing love being directed toward individuals during a “coming together” of such a loving group of people. 

Man —- life is GOOD.

Remembering everything . . . July 27, 2010

There was a time that I thought I at least had a handle on remembering things. I think I actually did! It seems now, though, that between this diagnosis, that diagnosis, this treatment, that test — along with what is going on with our house(s), I can barely remember my name! I know that I have some damage on an area of my brain that causes me to have some pretty significant times that I JUST can’t get the right word — or it’s there, but it just won’t come out of my mouth. That is so frustrating. There are also times that I will turn to my husband, take a breath to tell him what I am thinking, and *POOF* – away goes the thought. He says, “Do you want me to walk you through trying to figure it out?” Sometimes the answer is “Yes”, sometimes it is “I know the thought is gone . . . ”  There are also times that someone can tell me something and I will have no recollection at all that they said it.  It is as if those words were “sucked in” by some “universal word vacuum”.  To say the least, it is an odd feeling.

It happened in the doctor’s office today. I could tell him that I have scarring on the parietal lobe that has affected my word retrieval. THAT was easy. I just couldn’t tell him THE WORD I was trying to retrieve. GRRRRRRRRR! It was making me start to get really upset. He was really understanding, and told me to take my time. Eventually, I got the word out. It was important, because ultimately it was the definitive thing that let him know for sure that it is time to put a new port in my heart. I’m grateful he’s like that.

It’s not always the same with a lot of people. I think the ones that are the worst are the ones that say, “Oh, I know — I do the same thing.I know exactly how you feel.  ”  Maybe you forget. Maybe you really do. But sometimes, it really ISN’T the same thing. Sometimes, as I said, THE THOUGHT IS THERE.  Your brain just somehow won’t let it get from inside your head to your mouth and out into the air.  Sometimes I want to ask so badly, “So you know exactly what you want to say and yet your brain won’t let you say it?” or “You have people tell you things and then have absolutely no recollection whatsoever that those words were ever spoken?  REALLY?”  What type of damage did your brain sustain? Did you have a stroke, were you in a car accident, or do you have mycoplasm like me?

Have they actually HAD this experience?  Have they watched when people simply stared at them, waiting for them to come up with the word or words they are thinking?  Do they have to rely on their spouses to help them figure out what word they are trying to get out?  Do they understand how EMBARRASSING it is when something like that happens?  Typing is easy.  Backspace when you make the mistakes, wait until the cows come home until you remember.  No one knows because you are safely at home. 

Segue — need to get away from the kvetching! 

My husband and I were going to adopt a puppy to add to our family after our oldest “puppy” died at age 19 — 11 weeks ago. When my husband and I got there, we saw the brother of the female we had wanted to adopt. How could we leave him — all 1 lb. 13 oz. of him — alone without the only stable thing he had ever known? (If you can’t tell, these were rescue dogs).

Of course, we took both! As it ended up, though, both pups were incredibly sick. We almost lost the female within the first week. So, on top of all my medication, tests, infusions, doctor’s visits — and on and on — we added puppy medication, doctor’s visits . . .! I wouldn’t change it for the world. These little sweethearts are giving me the most incredible amount of life and love in return.  They are crazy, silly, character-filled little balls of fur that we call “the thundering herd” when they come in from outside.  Who knew that seven pounds TOTAL – between the two of them – could sound like 24 pups storming the house when they enter?!

Dave and I were married in 2003.  We have always called each other our “cohorts in crime”.  This has been especially important during my fight to beat these diseases.  When we saw our two pups together at the “foster family’s” house, Dave said, “Look at them.  Cohorts in crime.”  While we had initially a different name for the female – when we were only going to adopt her, we knew it simply wouldn’t do.  He looked at me and said, “Bonnie and Clyde.”  So from then on, those were their names.  I love it that he named them with such ease.  It was the most natural conclusion for him.  It was also such a moment for him, as well.   Seeing the smile — a genuinely happy hearted, full-out smile — made me remember one of many, many reasons why I love this man so much.

Do I remember things like I used to?  NO.  Do I forget at least four things every day?  YES.  Does it bother me?  YES!  Is there anything I can do about it?  Yes.  I can write lists like I do, I can keep a crazy-zany OCD looking planner like I do and I can do the best I can when I’m talking with someone.  I can also admit right up front when I’m talking with someone that I DO have this difficulty and that it MAY rear its ugly head.  I also admit to my family when they say, “Don’t you remember that I said . . . ”  that, YES, they probably said it, but NO, I don’t remember it.

My veterinarian knows that I have to write down everything instruction-wise with regard to Bonnie and Clyde so that I will remember.  He repeats it two or more times while I’m writing — slowly — so that perhaps I’ll be able to absorb it enough as well that I’ll remember it on my own.  He “gets that”.  It’s really reassuring when I’m in the office with him.  He knew me prior to my illnesses — and how I was — and so he doesn’t immediately assume that I’m some idiot who isn’t ever going to get what he’s saying.  He also lets me laugh about it with him.  He’s safe.

As I am writing this, I am watching two very content little pups sleeping next to me.  Their breathing is deep and relaxed, and they are happy.  It’s just another reminder of how good my life really is.  The real kicker?  It’s a reminder I don’t have to write down!

Trying to see the glass as “half full”! June 20, 2010

This sort of stinks!  I was having a rheumatoid flare a couple of weeks ago – after I had gone to see my doctor in New York.  I called him, and he gave me some medication to help me feel better but wouldn’t compromise my immune system.  Of course, feeling better, I became non-compliant with my restrictions!

Trying to move into this house has been a challenge.  There is so much to be done!  Unfortunately, I am a little too sick to do it.  I thought, though, I could paint the bedroom a wall or so at a time.  I lifted the 5 gallon bucket of paint we have – which is quite heavy compared to what it would have been years ago – and got the “sproing” that goes down your back, through both “buttocks”, down your legs and to the bottom of your feet.  It was a weird feeling.  The neuropathy I have prevents me from feeling much of anything, even when I cut myself.  Having a pain sensation in my lower legs and feet was kind of strange.

I waited for several days, hoping this would go away.  I finally broke down and went to the emergency room on Memorial Day.  The unit secretary answering calls there said that if my symptoms warranted, an MRI would be available.  Once I got there, however, I found out that there were no technicians working, and an MRI was NOT available.  The doctor shot me up with a LOT of pain medication, tried to give me steroids (they would make my Lyme, tick diseases and mycotoxicosis BLOW UP with growth), and sent me home with pain medication and VALIUM.  Um, HELLO?  I already had several herniated discs in my low back – my previous MRI’s showed that – and he’s giving me VALIUM????

This caused me to have incredibly elevated liver enzymes, and I had to go through a whole boatload of things to get those down.  In the meantime, nothing was really done to help my back.  I was taking care to make sure I did everything as carefully as I can.  Given that I have really poor balance – and some significant blindness in my left eye – it’s quite the challenge!  I was trying to transfer blankets from our washer to our dryer (both front loading) and ZING —the same pain I had previously dropped me to my knees again.

This time, it hasn’t gone away AT ALL.  It hasn’t even diminished.  I have an appointment with my neurosurgeon on Thursday to see exactly what needs to be done.  It is SO the pits!  In the meantime, I found out that I am strictly house-bound, because my white count is only 2.64  — for those of you who don’t know, it is REALLY low.  Granted, it’s because of all the antibiotics I have to take, but it also predisposes me to catching any and ALL viruses that are around me.  That means I can’t even see my granddaughter.  This so STINKS.

The UPSIDE to all of this is that it is Father’s Day, and my husband and I are going to celebrate it with our “child” (our dog, Lucky).  He is on his way home from PF Chang’s — they have a gluten-free menu — and we have some really good stuff coming our way!  We also bought extra so that we can have leftovers for lunch this week . . . what a great guy to whom I’m married!

I miss my Dad so much – today and every day, really – but somehow I believe that he got to heaven and said, “God, we have to do something.   The doctors in Louisville aren’t doing anything to find out what’s really wrong.  We have to get her to the right doctor.”  It was only seven months after he passed that I had the “aha” moment, contacted my friend, and began to get to the right doctor.  I think he’s looking out after me.  Thanks, Daddy — I miss you.

“Bouncing” back from a virus? June 14, 2010

It’s kind of funny — odd funny.  Before I had all these stupid diseases, if I caught a virus I would be sick for a day or so, then I was fine!  Now, if I catch a virus — which happens almost every time I go out because I have such a low white count — it takes days to recover.  This is definitely not what I am used to.  I bounce back now like a basketball that is underinflated!

I have given a lot of thought about my previous post.  I realized I left out a lot of disease processes that developed due to the Lyme and other tick diseases I incurred.  Given my education, knowledge and experience, I knew that any disease process has the possibility for some secondary diseases to develop.  I had no idea that you could get this many.  I really don’t like that my body seems to have “turned on itself”.  It’s kind of the opposite of AIDS.  With that virus, your body gets to the point that it can’t fight any diseases.  With what I have, my body finds all kinds of ways to fight what it perceives as a disease.  Unfortunately, it’s perception is a little skewed, and my body fights itself.  It’s not the best of situations for the home team.

The amazing thing is that I was so blessed that I found my physician when I did.  He finally disclosed that had I not gotten in to see him when I did, I would only have lived for approximately three more months.  Whoa.  I knew I was really sick, and I knew I was dying.  I just didn’t realize I was that close.  I am so grateful that I am going to live!

I think that is the blessing that comes from being that close to dying.  You don’t take a day for granted.  Even on the days that I am just too sick to get out of bed, I am still so grateful that I’m blessed to be alive.  The last statement in Tim McGraw’s song “Live Like You Were Dying” is really resonates with me:  “I hope some day you get the chance to live like you were dying.”  It is amazing the joy you find in such incredibly small things or happenings.  You find something like that almost every single day.

My granddaughter’s giggle makes me so happy that it almost brings me to tears each time I hear it.  When I answer the phone and hear my son’s voice say, “Hey Mom-ma — how are ya doin’?”  I experience such joy.  When I am really sick and we have gone to bed at night and I feel my husband’s hand reach out just to hold mine, I realize once again how amazingly blessed I am.

I remember that when I initially started becoming more and more ill, particularly when I had physicians who wrote me off as a mental case — and one who flat-out told me that I was going to die – period – I really didn’t feel like I was that blessed.  I don’t know if anyone who reads this believes in God.  I DO believe in a God, I just haven’t quite figured out the particulars still.   I know for sure, though, that I was prepared to handle this phase of my life because of God – in whatever form. 

I was blessed to be able to go to college at 31, then get into a Physical Therapy program where I had an INCREDIBLE neurology professor.  She arranged for me to shadow a movement disorders neurologist who told me on my first visit that he felt my condition was going to be a very odd combination of two, three or more diseases.  He also told me that he didn’t really know if he was prepared enough to diagnose all of them.  Now THERE is a humble physician!  I treated patients of a neurosurgeon here — during my last clinical affiliation — who was the physician who really is responsible for me continuing my search for answers. 

I made an appointment for an evaluation with him.  I knew I was not a surgical candidate.  I also  knew that this doctor “thinks outside the box” from working with him and seeing how incredibly intelligent and creative he is.  I knew that he would be someone who would help me find the answers I needed.

What did this man do that was so different from any of the other doctors I had seen?  He said — verbatim — “I don’t know what these long white spots are on your cortical brain.  They are not multiple sclerosis – they are not increasing in number.  They ARE increasing in size.  It is NOT normal and I DON’T like it.”  Then he said something I desperately needed to hear:  “This is not my area of expertise, but I can tell you this:  I want you to go to as many doctors as you have to until you find one who will diagnose you correctly and will give you the correct TREATMENT.  I don’t care how many of them roll their eyes at you, give you heavy sighs or accuse you of doctor-shopping.  You ARE doctor shopping.  You are shopping for someone who is going to save your life.”  Somehow given permission by this incredible physician to continue my search for the right answers and to ignore the incompetent doctors along the way gave me the courage and tenacity to just keep going . . .

Isn’t it amazing that sometimes all it takes is ONE PERSON to change your whole thinking, your whole outlook — and subsequently change your whole life?  I hope that as a practitioner I did that for at least one patient I had.  It is such a gift.

I had my life’s path so clearly planned out for myself.  I knew exactly what I was going to do and where my life was going to be headed.  Boy, was I wrong!  I read a sign that said, “If you want to see God laugh, tell Him your plans.”  I know there is a different path for me.  I was given a second chance to live!  I am so excited to watch as that path unfolds and is made more clear to me.

Life is good!