I have a few things I would like to cover in this blog...and, thrilled that I have had some "happenings" in my life :)
The surprising news is that I did make it down to the support group at UM yesterday (Wednesday). I was very nervous because I have a definite time limit on my vertical (sitting/standing) body. It cannot be put to the test.
On the way, I stopped by a drive-thru and picked up a large unsweetened ice tea. The caffeine gives me a major boost. My doctors recommend that I not do this, since it gives me a false sense of mobility and security and adversely affects my autonomic issue. For the immediate future, I saw a possible lift in stamina. It ultimately will catch up with me and, yes, I will pay. Not to mention, it will speed up my bp, which aggravates the aneurysm situation. The million dollar question was "how much mileage could I get out of the caffeine?". I needed approximately four hours for this ordeal, and the best I have ever managed has been two. If I could pull this off, it would be a miracle Going out of the gate, I knew I was asking for it. I have always flown by the seat of my pants!
I've mentioned the adrenaline factor before. This push can buy me extra time. However I have to be considerably psyched about something for it to kick in. It isn't the type of thing that I can control to "kick" in, as needed.
I was very excited to meet others in my condition. Also, Dr. Nancy Klimas, research doctor extraordinaire, was going to be there. I have never met Dr. Klimas, but have enormous respect for her.
I had the van with my power/reclining w/c in the car with me.
In the end, I knew that I should have brought my massive power, reclining w/c - the FOUR WHEELER, with me. I knew it, had it with me in the van, but was hoping the adrenaline and ice tea would do the trick. Unfortunately, neither of those things help with the autonomic dysfunction. I know better - no excuses!
I was hoping against hope that I wouldn't need it, so I went in like a "normal person"...I think the others at the table wore T-shirts that said "I'm with stupid', - with arrows pointing toward me! You will see why in a minute.
Before the doctor walked in the room, I saw her speaking with someone at the doorway. My heart was racing! I recognized her from the countless videos I had seen of her, most recently on Katie Couric's Evening News. When she introduced herself to me, I told her that I felt like I was meeting Bruce Springsteen....she laughed and told me that I would be sorely disappointed - which I definitely was NOT! I have to admit, if the "boss" was really there, I probably would have said "Dr. Nancy Who"???... there goes my ADD again - sorry...
The meeting is just barely what I would consider a support group. The group does have time to talk half an hour prior to Dr. Springsteen's arrival and half an hour after. By the time Dr. Klimas left, unfortunately, I HAD to get out of there. The main agenda of the meeting is to discuss the latest research, different conferences that Dr. Klimas has been to (and they are never ending), advocacy groups, etc. She/they were talking way over my brain cell deprived head.
I met a very sweet woman, Susanah, sitting next to me. She was a doll and tried to help keep me up to speed. From time to time, Dr Klimas would engage in a conversation with someone in her immediate area (opposite side of the conference table). So, ME BEING ME, I took this as my cue to turn to poor Susanah to continue wherever I last left off. Suddenly, I could sense the silence in the room....OOPS - sorry....that is until the next time or two! Reminded me so much of first (and every) grade at Sacred Heart - at least Dr. Klimas didn't hold scissors at my mouth to cut my tongue out!!!! What is that Peter Pan song...? "I will never grow up....." At 54, I guess I never will!
Horribly, mid way though the meeting my worse fear came true. I took a major nosedive. It was terrible. I was eyeballing the room to see if there were any sofas. None to be found, only conference chairs. I got to the point where I HAD to be horizontal.
Amazingly, at the moment I was going through this, Dr. Klimas was speaking about this very issue. I interrupted and said that I was going through it as she spoke. Luckily, the conference chairs reclined completely flat and the sweet woman next to me, pulled up a chair for my legs. I had to lie like that with my eyes shut. My vocal cords were going along with all that is involved with my blood pooling in my legs and away from my brain and upper body. Luckily, I was at one end of this very large conference table and Dr. Klimas was at the opposite. Because of this, all eyes were on her - thank God!
Dr. Klimas will be at the May meeting, which is great since I am still starstruck...she is an angel! Dr's Klimas and Rey cannot make every meeting, so sometimes it is left up to the group. As far as May's meeting, I would love to go. Now that I went to my first one, I am not going to have the adrenaline rush..what was unknown, is now known. I'll have to see what is happening with me when the time comes.
My doctor, Dr. Klimas' associate, Dr. Rey, told me that some are not well enough to attend. I feel that I am on the borderline...(ugh, now I cannot get Madonna's "Borderline" out of my empty head!!...ADD hiccup again) I really do not want to be one that is left to read newsletters. I desperately need to speak to others that are going through exactly what I am, face to face. Time will tell.
I have to say that today was a very special, special day!!! Of all the weeks I have posted that I am going to try and get over to see my grandchildren , an event that never seems to materialize, today I did it!!!!! It was like another one of those Rocky moments at the top of the Art Museum steps - YAY! ...yeah, I've got the power!!
Brayden, Gabriella and Maks "Doober" are the sweetest, happiest babies and almost a big four year old, I have ever seen. There are no words!! So many super tight, easy- squeezy hugs and kisses! I love, love, love it when they jump on the chair, snuggle and hang all over me! What is going to happen when they are old enough to ask "Mimi" for expensive things? I think this brings us back to the post where I mentioned having my jaw wired shut...or at least Jimmy having it shut for me. Geez I guess I'll also need a neck brace so I will not be able to nod my head YES, YES, YES!! I can't imagine ever saying no to them. KISS... THOSE .... CHUBBY.... ...CHEEKS!!!!!! This is SO cornball and major cheeeeeese, but they are the "Wind Beneath My Wings"....and they "Raise Me Up"...I know...hard to read :) See, I told you my brain isn't working tonight, I know there are better songs than those! In my defense, grandchildren make you cheesy...Chucky Cheesy!
I want to mention two very talented friends of mine.
First, is Ron Meliment, from Cinnaminson. Ron's name on his new novel is R. Lee Salkind-Meliment. He has written a beautiful book about the life of Pearl S. Buck, from the time she was a child through the end of her amazing life. Ron asked me to read it a year or two ago. As most of you know I have ADD. I love to read, but it HAS to be a page turner, and that it is. It was one of those books that you sloooow down toward the end of the book, so it lasts longer. I hope you take the time to check it out. It is available on Kindle and I am hoping, eventually in hard copy. You can download Kindle to your PC at no charge, and you can preview the first few chapters. For those that know me well, you know that I would not post about "Pearl" unless I truly believe in it. I honestly loved reading "Pearl" and hope you do to ~ not to mention it would be a great book for the beach this summer! Below is the link.
http://www.pearlthenovel.com/
My next very special Seattle friend is Vicki. She is incredibly talented and creative. Vicki has a blog - "Simple Hue". She focuses (no pun intended) on her amazing photography, highlighting others photographs and all things creative including interior design. Vickie's blog is beautiful and you could spend a long time exploring all it has to offer. In the next two or three weeks, she will begin her very first four week e-course. Vicki will offer three classes per week, with homework. It caters to your particular interests and talents, whether you paint, sketch, photograph, or whatever your creative outlet might be. If you think you have none, you might be surprised what you discover about yourself through the course.. To learn more about Vicki's course, google "Simply Hue", it should be the first option to click on. Once on Vicki's blog, the course is called "Raining Umbrellas" Hoping the link below will work, but not sure. Also, you can always contact me for more information.
my new creativity e-course
I want to add that this course will be so much fun for everyone and anyone. I am especially sensitive to those that are very ill, and housebound. This course would be something so much fun and distracting from the normal humdrum. Not to mention, you go at your own pace...a plus for busy moms and those that are ill. I will be taking part in the course and look forward not only to the fun, but every minute of time that I will not be fixated on my troubles or watching crummy TV. Those that are of good health, will love this course just as much :) Vicki herself, is suffering with MS. This is just as wonderful for her to fill her life with something so meaningful, and it is something that she was born to do. Thanks Vicki...we can't wait!...When you view Vicki's blog, you will see what I am talking about!
Sorry this blog went on forever. I have more to say, but will hold off for a few days. XO to everyone :)
Congratulations and best of luck to Ron & Vicki!
Sorry this blog went on forever. I have more to say, but will hold off for a few days. XO to everyone :)
You are a sweetheart, Cathy. :) Thanks so much for writing about my e-course! Can't wait to have you be a part of it!
ReplyDeleteI'm glad you were able to hear this doctor speak. So sorry you had to be horizontal for part of it. :( Why do we try to fool ourselves into thinking that things will be different this time...I should be fine with some caffeine, etc. I do that all the time and always pay for it. Glad we're in this together, sweet friend. Big hugs!