Wednesday, February 29, 2012

Oh my nerves...

..in less than an hour, I have to leave for my interview with Debbie, the designer.  Right now, I am in the process of trying to make myself look remotely human and alive...I need Tom Cruise for this mission.  This is a job in itself...and, unfortunately will wear me down before I even leave the house.  Hmmm, I wonder if she would consider me creative if I show up wearing a mask???? Maybe she'll like me for thinking outside the box..or in my case, outside the face.


Anything can happen at this interview.  Debbie and I will both be charting new territory.  So, we'll see......


Back to the make-up...and I swear, there has to be a mask around here somewhere......


Frank Sinatra is singing "Lovely" on my playlist.  Wow, you should hear all the nice things he is telling me..."lovely, never ever change...keep that breathless charm...."  Darn, I wish he was interviewing me today.....







Sunday, February 26, 2012

Adrenaline...

...LOVE IT!!!  Adrenaline has gotten me through some really special times and I am so grateful when if officially kicks in...once it hits, I know I am good (enough) to go.  How long it will last, is anyone's guess.  I was so psyched for our thirtieth anniversary, that I was POSITIVE it would pull me through.  Shockingly, it didn't and I ended up having to lie on the booth at the amazing restaurant we went to. It was so upsetting that I couldn't last the length of the meal.  Other times, it can kick in and surprise me for the duration.  Tonight was one of those times.


Today, we went to my niece, Melissa's, 27th birthday party.  Melissa is so special to me, that I knew I had to be there, and that the adrenaline would have to kick in to get me through.  Melissa is adorable and I couldn't be happier that we were able to spend her special day with her.


It has been a hellish month, physically....which then rolls over in to emotionally. Very hard and discouraging.  For the past week or so, I knew Melissa's party was coming up and I was convinced that I would make it.  Today was the day and I could feel that I would be able to handle it. 


As it turned out, we were there for a really long time.  Much longer than I would have thought possible.  Granted, I was sitting the entire time, but usually that isn't enough to buy me a lot of time.  It was a beautiful Florida night and we were all outside.


I loved catching up with everyone.  Such a departure from my normal day to day/week to week. Too accustomed to the solitude. I feel the need to apologize to everyone I talked to, because looking back, I was doing all the yacking!  UGH...that's what happens after spending so much time alone.  


I spent a long time catching up with Gina, my former sister-in-law. It was so great spending time with her.  We managed to talk about everything, and it was years overdue.  My kids and grandchildren were there too, which is always sweet! All in all, we had a great time.  Jimmy had a greater time than the rest of us...but, he deserved it!!


I am about to DIE at this point, and am really surprised that I am even sitting here typing. 


Just wanted to let the world know that I went to a party and lived to tell about it!!  ....now, I'm going to moonwalk back to the bedroom :)

Monday, February 20, 2012

This will drive me crazy..

..if I don't make this correction.  At the end of my last post, I wrote "Yuck ~ feeling so sick, miserable and tired....hoping to go to sleep... Rumpelstiltskin style....minus the beard, plus Rapunzel hair... " ....well, to prove I am losing it, I should have said Rip Van Winkle. Since I have nothing else to think about, I had since been wondering if Rumpelstiltskin spun gold or slept. I asked my mother who the twenty year sleeper was...ugh, she said Rip Van Winkle!  How did I not know that one????  I can only imagine how much I had written over this past year that didn't make sense. I guess it is better that I don't know!  Anyway, if it were up to me, I would much rather be spinning gold than sleeping anyway... but, that's another show...


Also, for the ten that are on my auto-notification list, I apologize for the repeated notifications from my last post.  SO embarrassing, expecting you were all "moanin' and groanin'" each time you rec'ed another notification.  Again, I am such an "Aunt Mary", especially with my new phone.  I can now access my blog and post from my phone. When I was playing with it, I kept re-posting, over and over... so sorry!  Hoping I don't continue to make the same mistake, but I'm not making any promises!


I have to say that I do love my phone.  Since I have to spend so much time in bed, it is a Godsend.  My laptop is too hard to use in bed, since I have to be as flat on my back as possible.  With the phone, it is like having the computer right there.  It is so much fun!  I am addicted to Words With Friends....it REALLY helps pass the time.  I was telling me mum about it today, while she was here.  My mother would absolutely love to play this. I was hoping it was something she could do online, but it only works with certain phones and Facebook.  Unfortunately, she isn't equipped.  I'll have to get her on FB...or as my father calls it "Spacebook"...OY!  If he were to join, he would be a Space Cadette....Mr. Kevin Spacey...my mother would be Sissy Spacek...stop me....


I hate to say that I am still "moanin' and groanin"...still so sick...very hard on many levels.  Wish I could say that I am "a mooovin' and a grooovin'  ....one of these days that will be the title to a post.


Today, my mother told me she wants me to put her back on the blog auto-notification list. I'm on the fence.  If I do, I'll have to read over my posts since November and see what I should erase.  For now, I am holding off.  I'm sure I'll add her back in soon.


I felt bad when my mother came today. She comes, hoping to help me in some way, or even just talk, to...once again..."pass the time".  I was so sick when she got here and wishing she didn't go out of her way.  She really looked exhausted.  Luckily, her visit only lasted around half an hour.  And...I was happy that she came. It was a nice break to chit chat for a short time. 


I was wondering when I was going to blog again, since I really don't want consecutive "oh, I'm so sick" posts.  These days, I obsess about little things, stupid, stupid things.. .....ssoooooo, the Rumpelstiltskin blooper was driving me craaaaazy.  Not knowing when I would write again, I had to get on to spit that out!! Hmmm, who would have guessed that my gift of gab would have kicked in again....back to bed to spin me some gold..


  

Friday, February 17, 2012

Moanin' and Groanin'

Ugh...going on 5:00 am and no where near ready to sleep.  These nights never seem to end..too quiet, black and boring.  I've decided to come on an write a few lines, with nothing else to do.


It has been a really rough three or four weeks.  I managed to pull myself together for Phil and Laura's get together on Sunday.  Aside from that, it has been just horrible.  Being sick ~ always ~ is too much.  To think that I would have complained years ago, if I had a 24 hour bug.  Being sick for 24 hours would be amazing!!!  So great to know that there is a light at the end of the tunnel.  These days/years, my tunnel is one big circle, with no end.


I guess I am going through a downward emotional spell that comes along with the worsening symptoms. I have to say, that doesn't help matters. The endless weakness, horrible fatigue, all muscles feeling like they are decomposing from the inside out, nausea, the cognitive collapse is all still a never ending nightmare.  I don't expect the day to ever come where it stops being surreal.  There is so much more to it, but I'm sure you get the idea.  These days feel like they never end.  I just need to sleep to escape....make that, ESCAPE..


In a past post, I think I mentioned that I e-mailed some local designers looking for some type of behind the scenes work.  A tall order, for someone in my shape.  I may have said this before, but I shockingly received a response from one.  We spoke this past Monday and, as you can imagine, we talked for such a long time that I feel like I have known her.  She reminded me so much of my friend from home, Carole (QVC cakes).  I loved her!  (Holla Carole :)


We arranged to meet after next week.  During our call, I gave her an idea about my business and she told me some things about hers.  We are approximately the same age.  I told her "to be honest, I am shocked that you responded to my letter" (as I mentioned in the letter that I am chronically ill). She said that she was intrigued by my letter.  I was so touched because she said that, initially, she was not looking to hire anyone. She (Debbie) would like to meet with me to see if we can work something out.  It amazed me, because it appears that she is putting kindness before her (lack) of needs in her business.  For those of you that know Carole, you would understand what a great impression she made on me and why I can't help but get my hopes up.


When we do meet,  I am going to continue to be completely honest.  Debbie would need to know that I am rarely reliable, due to my health issues. Unfortunately, rarely reliable is honest. Without disclosing everything, we wouldn't possibly be able to move forward with an appropriate arrangement.  Again, I cannot imagine, for the life of me, how I could help her.  She did say that she already has a couple of ideas and is looking forward to talking to me about them.  I'm going to go wherever this takes me...maybe, I'll be in for a surprise!


I am concerned about my condition the day I go in to see her.  If my brain isn't functioning properly, it would be a total waste of time.  Just hoping, this spurs my adrenaline.  I would love to at least make it through our first meeting coherent!  Looking forward to blogging about that meeting.


Yuck ~ feeling so sick, miserable and tired....hoping to go to sleep... Rumpelstiltskin style....minus the beard, plus Rapunzel hair... 


Apologizing for the phone calls and e-mails I haven't been returning.. ..although I have been loving "Words With Friends" ...woo hoo kind of fun for me these days! 

Monday, February 13, 2012

Ouch, Ouch, Ouch...

...Busy, Busy, Busy...


Today was a hectic but really great day.  The past two or three weeks have been pure hell, but the worst seems to be over for now.  I'm back to my old "normal"...hey, I'll take it...


Earlier we all got together at Ryan and Liz's so everyone could catch up with Phil and Laura. With them living in Charleston, we only see them every few months.  When we do, it is so great!  I love seeing their faces right there in front of me.  Jimmy's brother Dan saw Phil and Laura for the first time in around 2 1/2 years, which was nice.  Dan brought his bff Bobby....who needs to change his last name to Steuber.  Bobby has been around long enough to earn his Steuber stipes!


As I expected, this long day wore me down...to the bone.  If it weren't for taking my pain medication earlier, I would not be sitting here writing.  The medication is not a 100% fix, so I won't be going on and on....you're welcome!


Tomorrow, Monday, I am to call the designer that responded to my letter.  Even being over the worst these past few weeks, I am still painfully aware that  I won't be able to work anything out with this designer.  Regardless, I'll  call and take it from there.  I know, I know, I can be naive, but the fact that she responded to my letter is a good sign.  Knowing that I am chronically ill and returning my letter spoke volumes....I think.


Thursday I have a long overdue appointment with my UM Neurologist.  We have to address the numerous very large cysts up and down my spinal cord.  He feels that I am losing spinal cord fluid.  Again, being naive, I had chosen to put my head in the sand regarding this blip.  I have so many other pressing health issues, that I just do not want to deal with this.  In talking with my immunologist, she said that it is too serious to ignore...UGH!!!!!  The next avenue would be meeting with a neurosurgeon.  It is a lousy surgery and I just want to look away.  My hope is that I can talk my neurologist in to talking me in to  letting it go..talking in circles..I know, naive.. 


The other day, I had a strange episode.  It was completely apart from my normal issues/symptoms.  Without boring you with the details, I am suspecting that one of the cysts may have ruptured, leaking a lot of fluid.  That day was horrible and scary, but by the following day, the symptoms cleared up.  So, I know I have to deal with this mess.  We'll see what this appointment brings.  


Aside from all of my issues, I have some new and worsening existing neurological symptoms.  My immunologist is still thinking that MS in in the mix.  At this point, it really doesn't matter.  With all that is going on with my compromised immune system and autonomic nervous system dysfunction, the neurological symptoms are way at the bottom of my list.


I really do have to get horizontal, but wanted to ask anyone that knows my parents not to disclose any of the information I write in my blog.  Several posts ago, I mentioned that I took them off of my auto notification list.  My mother gets upset and sad when she reads some of what I write.  She needn't be bothered with anything negative.  If you could, please remember not to mention my blog to her.  Not to mention, she is local and sees it all, up close and personal...that is more than enough information for her.


I do have to mention tonight's Grammys - YAY!!!  That show never disappoints.    Tonight was like my playlist....Adele, Coldplay, BRUCE, Beach Boys...their performances were all excellent!  As far as some of the others....feh (my yiddish word I learned from Dina :)


I'm inching away....so tired...good night moon...

Wednesday, February 8, 2012

Before too much time passes...

...I wanted to make an effort to get something written.  Lately, I have been very sick.  I'm not sure when it all tumbled downhill, but I would say maybe two weeks ago.  It is all just so miserable. A very bad spell, by my standards.


I owe phone calls to several friends/family, but now is not the time. I'm hoping that this will calm down soon, so I can get back in touch with everyone.  Everything is so incredibly difficult when I am in this state. Now, if I only had violin music on my playlist, I would elaborate about all of my symptoms....lucky you!!!


There are two things I wanted to write about.  One is something so funny that my mother said earlier.  She is hysterical...FYI, she was voted "Class Clown" her senior year at Little Flower High School - class of 1,500 girls...just so you know she is legit :)


Anyway, she is doing unbelievably well.  I am astonished at the progress she has made since coming off of the steroids.  Even though I knew going off would help, I never saw this degree of recovery coming.  My mother is pretty much 100% at this point.  Sooooo, making an itsy bitsy story a never ending tale, this is what she said.  I still have to laugh to myself when I think of it...she said " I can tell that I am better, since Dad isn't telling me he loves me every five minutes anymore".  My father was telling her how much loved her every time she looked in his direction, while she was at her worst.   He is obviously veeeeery comfortable with her dramatic recovery...that just cracked me up!  Maybe, you had to be there!!....anyhoooo


The other thing I want to touch on, is my quest for a custom made job...one that would fit me to perfection.  The night I last posted about this, I found some local designers online.  Being my impulsive self, I quickly wrote letters to the few I found, describing my background and that fact that I am now chronically ill.  I said that I would love to find a behind the scenes job with a local designer.  I barely proof read it, before I hit "send".  SHOCKINGLY, one actually responded!!!  Initially, I was super excited.  Then, the more I thought about it, I pretty much came to the conclusion that there is absolutely not a thing that I could commit to do.  From owning my own design business for so many years, I know the possible positions they could have...even the simplest assignments would be incredibly difficult for me to do, on command...when she would need things done and not on my time.  


Regardless....the designer is out of town this week and she wants me to call on Monday to set up a time to come in.  She asked, in her e-mail, if I was able to come in to the office.  When I read that, I thought that she understood that I am sick, yet still invited me in....to beg and plead. Maybe I am naive, but I think that is a good sign....I can envision my first paycheck being made out to Pollyanna... I think I'll frame it!


I will go in next week, sit down and be as honest as humanly possible with her.  She would need to know exactly how unreliable I am, but also what I can do for her, when I am physically able to be present.  Of course, looking back over the past few weeks is discouraging.  If I had any type of employment, I wouldn't have been able to work .. PERIOD.  UGH!!!  I want something to work out so incredibly much, but know ....well, I just know.


Something nice....Ry & Liz...your Sinatra wedding song is on again...makes me so happy :)


My daughter-in-law, Danielle texted me a picture of my angel faced grandson, Brayden today.  He is four years old and in preschool.  It was a picture of him standing in his classroom, in front of the blackboard where he had written "Brayden Steuber".  He looked SO proud....and wearing his Phillies shirt too!!  It was the absolute sweetest picture.  I told Jimmy that even if I didn't know this ABSOLUTELY BEAUTIFUL little boy, this picture would still have warmed my heart.  If I weren't such a Flintstone, I would have posted the picture on here for everyone to see...yes, he really is angel faced..and legit like his great grandmother :)   Also, his favorite song used to be Viva la Vida and it is on RIGHT NOW!!! Woo Hoo Brayden....WooOOOooooOOOOooooOOOO...good times :)...kisses kisses kisses kisses kisses!


Before I sign off, I have to say how excited the Florida Steuber's are that Phil and Laura will be coming home from Charleston this weekend. I CANNOT wait to see them...it has been too long!!!  A sight for sore eyes for sure..at the seashore...say that three times quick!  Hurry up guys, but drive safely!!