Enter at your own risk...

From the start of the blog last week, I decided that I would not get too heavy, regarding my health issues.  I knew you all had the gist and didn't feel the need to elaborate.

Today I am writing a totally selfish post and I apologize. I would talk to Jimmy, because I desperately need him to help me.  I am avoiding conversation, since I know I would burst in to tears and, not to mention, he could not do a single thing to help, nor do I have the strength for conversation.   This upsets him as much as it does me.  If I thought I could get help at the hospital, I would be at the ER right now.

As of a few hours ago, I hit one of my worst of the worst spells. These can last anywhere from hours to weeks.  It us unbearable.  My body feels like it is being eaten alive, from the inside out, head to toe.  It is a horrifying and scary feeling that I will never get used to.  I have so many other symptoms going on at the same time.  They are running rampant throughout my body right now, and it is a living hell.

In a previous post, I mentioned that I have at least five active viruses that became part of my DNA.  In more advanced cases, such as mine, the symptoms can be the same as an HIV patient, within two days of death.  That is exactly how I feel.  I only wish I could have the advantage of someone administering morphine to get me through this nightmare.

Again, I am sorry for spilling this ugly side of what I am going through. I never expected get in to the true miserable details.  I just needed to scream out to the world that this is more than I can handle.

I will hold off posting, until I can do so in a more uplifting way.  Hopefully, it will be sooner rather than later.

This is a tough one...

If my psychologist, Dr. Wonderful, were here right now, she would tell me to stop what I am doing and get back to bed.  Oh - I am so upset!!  I have been really sick since Wednesday afternoon and unable to post a new blog.  I am not any better, but wanted to come on for a few minutes to talk about a few things.  A mile down the letter, you'll find the reason I am really pushing myself to write today.  I am so upset because I finished writing and somehow, inexplicably, deleted it.  I was using spell check and when I clicked on a misspelled word, the page went blank.  Well, this could be your lucky day, because I will probably not be as long winded - ouch - it hurts when your nose grows...no lie!

I hope I can remember what I said - hold on a second......

Basically, I was explaining the effects of the blog on me physically.  I have been warned by my neurologists not to exert energy and to eliminate both good and bad stress.  Obviously, we can only control the stress factor to a certain extent - things happen.  The excitement of writing the blog, as well as the beautiful, encouraging e-mails and comments I have received, caused me to ride "the wave" for an entire week - shout out to Ron Jon!  Unfortunately this isn't a good thing.  I knew going in to this, that this would be a physical risk for me.

With my "condition", any good/bad stress causes my adrenaline to go through the roof.  The "rush" takes up any and all strength/energy that I have.  This causes total physical destruction from top to bottom.  I had no idea just how exciting writing the blog would be.  My brain was on the adrenaline high for the most part, but physically the change was minimal.

I saw Dr. Wonderful on Wednesday afternoon and I think I managed to hold on to the mental/physical upswing until I saw her.  I was super excited to tell her how the previous week unfolded.  I didn't begin the blog until the day after our last session.  All I can say to those that know me well, is that I felt like I was bringing home a report card with straight A's. ("high fiving" myself...aka, clapping)

Not surprisingly, we spent most of the hour discussing the blog, the good, the bad and the ugly (remember from my last blog, I'm a pretty young thang sittin' behind this keyboard!).  When she brought up pitfalls, I knew exactly where she was going.  It was something I was aware of, but not wanting to admit, at least not until I had no choice. I have to take it in stride and try not to get too excited about it.  Almost immediately after our session, I took a major nose dive and am now back to where I was prior blogging, which is my normal.  It is best for me, to keep myself steady and not take this too serious.  Dr. Wonderful and I discussed strategies to cope with this new "chapter" in my life.  I don't think I'll need to implement them, since my body is taking over and putting me back in my place, not to mention, there is a "gone fishin'" sign sticking out of my brain....hey, I thought fish was considered brain food...

Even though everyone knows that my life is an open book, I do not want to get in to my daily symptoms and struggles, it seems emotionally healthier for me to avoid that subject. However, I do want to explain my cognitive issues.  I think this will help you understand when I am too sick to post, answer the phone or return e-mails.  For a large part of my new life, my brain can't seem to handle the simplest things.  I have explained to my friends and family it is like I have no "mental strength".  Prior to getting sick, I would have never put those two words together or understood what it meant.  At times, it takes so much energy for me to answer a simple question, sometimes causing my speech to slur.  If I am having a conversation with Jimmy, and I feel the struggle to get the words out, then slur my speech, I stop in my tracks, (yeah, you heard it here...I stop talking baby..Sr. Ann Girard should see me now) and get back to bed.   I am going to have times where there will be days between blogs, but, as the "Talkinator"..."I'll be back"...

On to other things....I decided I don't like the name of my blog.  In fact, when I was setting it up, I'm not sure I realized that what I wrote was going to be the name of the blog.  With the constant ADD interruptions, I was thinking "Off Topic" :)....any suggestions???

Now for the reason I pushed myself to write today...TWICE...is that I wanted to remind you that tonight is the finale of Oprah's "Your OWN Show" at 9:00, obviously on the OWN network.   I am so excited...oh no, calm down sister...for my guy Zach!  I am so confident he is going to win. Whether he wins or not, I am going to have more to say on that subject in future posts.

As Phil and I would jokingly say (Phil, you better be reading!!!!!), I am "spent"....

Again, thank you so much for reading and your beautiful feedback.  Without it, I am sure I wouldn't have the courage to continue.....writing, that is....I don't want to see Kevorkian as a "follower"! 

XO

You guys you....

Again, I am so touched by your responses on here as well as private e-mails. The shock that I am feeling, is proof that I must not have thought anyone would actually read, or follow this.  I am in shock!  Although, I am not so shocked that I am speechless :)    I am flabbergasted - with the emphasis on flab...but that's another story and my A.D.D. jumping in!  As with all A.D.D. conversations, we will probably come full circle by the end of this post :)

My first blog was a six days ago and I have to tell you that I love it.  (*A.D.D. ALERT* Carole, remember Molly Shannon on SNL "I love it, I love it, I love it" well that's what and how I'm saying it, minus the bending my knee around the back of my neck part!!).  I know what you are all thinking...and you are probably right...the blog enables me to NEVER stop talking...

I am pretty sure that I previously posted an entry that, up until six days ago, I had nothing to do but watch mindless TV (except for the Bachelor and the "Real" housewives :)   ). I would spend every waking moment trying to think, think, think of a "purpose"...my purpose. It amazed me that there was none....how could anyone be that sick?  How could I be that sick???  How could something so unacceptable be a fact??I have been doing this for so long now, it has almost become a new symptom. Not singing the blues, it is what it is (Erica!).

Now that I am blogging, I spend my time thinking about what to write.  Still not sure what "purpose" it serves, but I know that it feels like an enormous, emotional weight has been lifted.  Needless to say, I would much prefer not to be blogging , but rather working, volunteering with hospice, babysitting (that's really #1!) power walking 100 mph, like before this nightmare hit, but it fills a huge, vacuous void in my gut....which brings me back to the flab situation....

I am mentally preparing myself for a major smack down (not sure what that is, but it sounds right!)  from my endocrinologist next Monday.  It was October, 2009 that I was diagnosed with diabetes.  With all my health issues, I am forever having blood work done.  Because of that,  my diagnosis came the minute it was official.  Luckily, my numbers were on the very low end of above normal.  Since then, I have not been taking my medication as directed.  Not because I don't want to - I just never, EVER remember.  I am supposed to take it twice a day, with meals.  Jimmy has actually put it on my dinner dish, only for me to mindlessly take it off, put the food on my dish, eat dinner and realize that I forgot to take it....who does that??? I am supposed to take it before meals.  I am hoping the doctor tells me that it is just as effective after.  For some reason, once I am full, I think "I could have had a V-8"...no, no, no, "I mean I should have had my Metformin"...however, it is that head smacking type of moment. (ADD ALERT - Oprah has her AHA moments - mine are all head smacking,) Along with not being vigilant with my Metformin, I have not been eating as a diabetic.  OY - I  just know the numbers will be higher (blood work & scale) than October of 2009.

Back to being flabulous....living  horizontal, has certainly contributed to my ridiculous weight gain, since this all began six years ago.  You don't have to be Einschteeeeen to know that exercise is only part of the equation.  Obviously, I do have control over what I put in my mouth.  My excuse, and I know it is lame, is that I am so, out of my mind, bored every day.  You all know me - I never sat still - this is pure torture...six long years of being cow tied.   Another complicating factor is that I absolutely love watching Top Chef (so excited that Anthony Bordain is a semi-permanent judge this season...cough, cough, A.D.D. ALERT, cough, cough...Ryan just met him, had his book signed and "Tony" wrote me a love letter on his photograph...actually it just said Cathy...then his signature, but I could read between the lines!), several shows on the Food Network and Cooking Channel.  I have always loved cooking and am so intrigued by the creativity and talent on some of these shows.  I think they have suckers like me in mind, when the meal is complete and the chef/cook is bringing the fork up to their mouths - the camera zooms in - lighting is perfection -  the chef/cook looks like they are about to faint just from the sight of it....I think it is at this point that I faint!   You have all heard the expression that some people eat to live (my own MOTHER, you would think she would show more compassion...Anita, and all of a sudden, Jimmy is a turncoat, 'sup?...) and others live to eat.  Why, why, why do I love it so much?????  Bottom line (took a long time to get here, huh?), is that I have to get serious about losing weight and eating diabetes friendly food.  Aside from the diabetes, there are so many motivating factors.  I have tried and failed so many times.  This time I am not saying that "this is it - new lifestyle - you couldn't force a hamburger down my throat:" ....sound familiar Erica????  Rather, I am just not going to get too wound up about it, but taking it a day at a time. Being so heavy and sick looking, I am definitely not flabulous....but you can't see me and I love that :)...hey, wait a minute - I look gorgeous, yeah, you should see me - a real looker :)

I  began blogging, expecting to concentrate on my serious health condition (more to add  - not A.D.D. - on that down the road).  It is funny that I am not letting that all out, like I thought I would.  My mother - yeah, the skinny one - always tells me to stop sounding so good, because no one will believe how sick I really am.   Of course, she is kidding and doesn't want me to sound like a well person calling in sick. Usually, I can fake it if it is for a very short period of time, if I can't then I do not put myself in the situation, phone calls, etc.   On here, no one can see me typing, or having to take a break here and there before I finally finish.  This little blog experiment is evolving in to something completely different than I would have ever expected...and I think it is more healthy!

Just want to ask you all to excuse my errors in grammer, spelling, etc.  When I'm done, I AM DONE!!  Keli, I can't help but picture you cringe...I mean Dr. Steuber :)

Initially,I asked you all not to share this with anyone other than your immediate families. Now that I feel more comfortable with this blog experience, I would be honored if you decide to pass it on.

One final word for my internet g/f Shari - thank you so much for inviting me to view your blog.  Otherwise, I would still be wondering why I have to continue living. I am now living while wondering about the topic of my next blog.  You are such a precious gift! 

LOVE YOU GUYS!!!

Tip-toeing back in...

I want to thank you guys, with all my heart, for your beautiful comments and e-mails.  Honestly, I was overwhelmed and, to be honest, feeling a little bit J.K. Rowlingish....not that it is going to my head. 

Obviously, this is still a work in progress and I have no idea where it will lead.  I am not sure I understand why, but it seems to help me deal with my emotional issues surrounding my illness.  Rather than lying in bed, searching for a purpose, I find myself lying in bed thinking about exactly what I would like to talk about in my next entry.  I am hoping this feeling isn't going to be short lived...time will tell.

I am sure you are all aware of Oprah's new network, OWN.  She currently has a show, searching for the next great show host.  They are down to the two finalists.  The contestants have different ideas for their programs, including cooking, self help, etc...same ol', same ol'.  One woman actually said that she wanted her show to be a like combination of Oprah & Ellen - keep dreaming!!  She was really grasping at straws when they asked her what her show would be about - that was a "laugh out loud" moment :)

Well, I am super excited because one of the two finalists is disabled.  His name is Zach, he has cerebral palsy and is confined to a wheel chair.  The format for his program would be all about traveling, specifically overcoming obstacles.   He said that he obviously wouldn't be portraying the perfect, flawless vacation, but he is showing that it need not be and can still be successful.    Of all the things that he could focus on in his show, I would have never guessed travel.  I think it is very ambitious, but definitely a show I would watch.  "Poppa, can you hear me...",  I mean Oprah, can you hear me???? PICK ZACK!

Aside from this being a great format for programming, Zach is a character and has a fun sense of humor.  Over the past several years, since I became so ill, I wished for one single show, 20/20, Primetime, etc., to devote an entire hour to the thousands of people that are just like me.  This thought would have never crossed my mind, had I still been well.  It's funny how things change when the flip-flop is on the other foot.

Anyway, I am so thrilled for Zach....even that he made it this far.  My hope is that he will win, and it will inspire other cable networks to consider similar shows. 

In the meantime, on the opposite end of the spectrum......I am watching my guilty pleasures - "The Bachelor" is on tonight, last night I saw the first episode of "The Real Housewives of Miami"..I know, eeewww, eeewww, eeewww.  This confirms that I am crazy, but can't tear myself away ~ this is like being in confession!  I am happy to say, that I haven't succumbed to "The Jersey Shore".. . yet!

As far as TV, I stumbled upon "Extraordinary Measures", with Harrison Ford, on cable this morning.  Such a great true story.  It just came out in 2010 and was surprised it was on TV so soon.  Everyone should see it, I promise you won't be sorry!

Later this morning I have to go for blood work - ugh!!!  Due to my autonomic nervous system dysfunction, it makes it especially difficult for the technicians to draw blood.  It is always a white knuckle time for me!  Sometimes, they just send me home, after several attempts.  They tell me to wait a week and come back again.  Other times, they have managed to get a vein, but the blood comes out drop by drop and they again say to come back.  I know the tricks and I have to drink as much water as possible before going.  Hopefully they get what they need in one shot. 

This blood work is for my endocrinologist appt. next Monday to discuss my diabetes and Hashimoto's.  I have to get back on my diabetes diet.  It is so important for so many reasons.  Any fellow dieters out there know how depressing it is to tackle a diet and fail.  The fact that I cannot/am not permitted to exercise makes the process so much slower.  I'd give anything to go for a power walk at the beach...there was nothing better!

It is almost 6:00 am and this is another one of those sleepless nights.  According to my UM doctor, sleepless nights, along with my severe sleep apnea, and often not reaching the REM state of sleep directly correlates with my ANS issues.

I hope I didn't bore you, since I am so exhausted.   If no one reads this, that is okay too.

Now I am starting to think I am less J.K. Rowling and more Andy Rooney.....off to check my eyebrows {:)

Next post, my brain will be sharper and I'll cover some more things I wanted to mention.  I only hope I don't start with "Did you ever wonder why....??"

Day Two - Woo Hoo!

Last night I didn't get to sleep until approximately 4:00 am and slept until 2:00.  I haven't been doing well, and knew that I needed today to do nothing at all and get as much rest as possible.  As you guys know, I never, EVER pick up the phone and call anyone.  Believe me, it isn't that I don't think of you all, all of the time.  Isolating myself from my family and friends is hard to describe - it is the most horrible, lonely feeling.  I have a new found respect and compassion for the poor old Maytag repairman!

When I am at my worst, I just don't have the mental strength to hold on to conversations.  Another pitfall of phone calls, when I am at my worst, is that I am extremely miserable and it really shines through - not a person anyone would want to be stuck with on the phone. I avoid talking to anyone, at all costs, when I feel that low and edgy.    When I do make the rare phone calls, I have to be feeling well and clear headed, before I dial, I take a deep breath....then I don't come up for air for hours...imagine that!  Sometimes it is a really big mistake and the price I pay is hard, other times, I can get through the call without being affected.  Times like that I feel like Rocky at the top of the Art Museum steps!  Also, during those great calls I feel like my old self and if feels so good ~ like a dream.

Today, wasn't the best of days, but I made an exception on my "making a call criteria".  I made the exception because Ceal had a recent death in her extended family and they have been heavy on my mind.  I called Ceal and we talked for FOUR hours!!!  It has been so ridiculously long since we spoke.  At the end of the call, Ceal said that we didn't scratch the surface....she was right.  Since we hung up, I have thought of so many more things I wanted to talk about...I know that doesn't sound like me does it?????  Obviously, I was diving by the end of the call and had to get off.  

Initially, I was very sick, but shockingly ended up making an easy dinner.  I think I was still flying high from the adrenaline rush of my "visit" with Ceal - so much fun!!!  I hope I remember to look back at this journal entry on the days that I have endless tears.  This will remind me that there are still snippets (a four hour snippet!!) of time that are priceless gifts.  It is easy to forget such times, when my body and brain are destroyed..   I am hoping to call my internet friend, Shari tomorrow. You all have heard me speak of her. It is amazing what great friends we have become, considering we met on the MS message boards five years ago. Fingers crossed, that Shari is really who she says she is!!!  If not, I have been wasting my cerebral, high brow conversations with an internet loon!

Lately, I have been having to eat dinner in bed, which is a pain.  I have said that I am the only person I know with spaghetti sauce stains on my sheets....anyone else????  I didn't think so :)  If I am able to make dinner, it has to be something super easy, with minimal standing time.  Once I get through that, it is too difficult to sit at the table to eat.  If I did, my blood pressure would go through the roof and my body would crumble.  I can easily tell if it is safe to eat at the table or not. It is hard eating in bed, since I really need to be as horizontal as possible.

Because of the really, really fun call with Ceal and making dinner, it was a two Vicodin night.  I am extremely conservative with Vicodin.  It is like holding your breath for as long as you can, before you gasp for breath.  By the time I decide that the pain medication is a must, I have been in pain for hours.  I don't "pop" them as often as I really need, for obvious reasons.

It is now 12:15 am and I am going to see if I have luck getting to sleep tonight....Ceal wore me out today!! Thanks Ceal XOXO

Out of my comfort zone...

Deep breath.... okay...here I am, about to a write to a public diary.  A big scary step, but one that I am hoping will be rewarding for myself, as well as my most loved family and friends.  It seems unnatural going public, since diaries and journals are so personal and private.   My hopes with this blog, are that it will help me to finally hit the elusive "acceptance" stage of my ongoing health issues,and put everything out there for all of you guys that have been waiting for months on end to catch up.

As you all know, I have ADD, so if I start to interject hearts, flowers and XOXOXO's mid-sentence, you will all understand.   Not to mention, I am sure you are expecting my short stories to be miles long.....no, really, I do that :)

At this point, I am not going to write about the "long and winding road" that has taken me to where I am today.  My inner-circle knows enough about all of that.  If at some point I go a little more public, specifically targeting (tarjaying) those that are chronically ill, I will post a brief (that was a lie) bio. 

My insane list of ailments include, diabetes type II, Fatty (what a name) Liver disease, Barretts Esophagus, Hashimoto's Disease, Bi-Cuspid Aortic Valve with Aortic Aneurysm, Postural Orthostatic Tachycardia Syndrome (an autonomic nervous system disorder) and I am sure that I am forgetting a thing or two...or three.

I am seeing a new neurologist and immunologist at UM.  The immunologist, Dr. Irma Rey, is extremely bright and works along with Dr. Nancy Klimas.   It appears that I have at least five active viruses that have become a permanent part of my DNA, living in my cells.   Dr. Rey has me on extensive supplements as well as a strong anti-viral medication.  Since I have been so sick, for such a long time, Dr. Rey isn't making any promises.  For the time being, I am going with the flow to see if there might be the slightest improvement.


Unfortunately, the autonomic nervous system issue I have is now a complicating factor with my aneurysm - not good.  When I am vertical too long, which could be minutes or an hour or two (in a chair), my blood pressure and heart rate will jump at least thirty points.  The elevated blood pressure causes stress on my valve and more importantly, the aneurysm.  My cardiologist, Dr. Fromkin, is keeping a close eye on this.  I think you all know the ins and outs of this mess, so I'll skip all the details.


Well, typical me ending up writing a bit of a bio in the end.


My wonderful internet girlfriend, Shari, began a blog several months ago.  There are so many days when I want to call and see how she is feeling, but I am just not up to it myself.  In checking on her blog, I was able to see exactly how she has been doing, her activity level, how her new medications are working, etc.  Not to mention, I found it uplifting.  Although she has her bad days, it was nice to read about days that she was productive.  Being chronically ill, I can tell you there is nothing more wonderful than having a productive day.  In my case, that can simply mean that I made an easy to fix dinner, or had a wonderful phone call with a great friend, without suffering when hanging up.  


I have been trying to find a reason for me to be alive.  Do not confuse this with suicidal thoughts, because that is not an option.  Nonetheless, I lie in bed for hours on end, day after day and just cannot find a purpose for me to be here.  Spending time with my amazing, supportive family and precious grandchildren has become almost unbearable physically.  I put on a brave front and manage to rally, to a certain extent, but the price is getting to be too much.  When I put on the brave front, it is not for the benefit of others, it is really more for me to squeeze every single second out of our time, before having to retreat in to the bedroom.


As I should have known, this first entry is much longer than I expected.  In the future, I plan on giving a glimpse in to my daily life, so it shouldn't (another lie) be so long again.  Physically, I will not be up to posting on a regular basis and will take it a day at a time. Here comes the ADD  XOXO <3 <3 <3...thank you for listening!