My vision has been deteriorating so I saw the Ophthalmologist yesterday. Optic Neuritis. Called my Neurologist who recommended a Solumedrol treatment. So, here goes the home health, insulin, eye patches and a basketball face all over again. Arrrgggghhhhhhhhhhhh!!!!!!!!!!!!!!!!!!!!!!!!!WTF?

Pardon my insinuated language but I am me and me is pissed. 3 Tysabri Infusions and a flare up is not what I expected. Between all the funky stuff my bladder has been up to, my spasming legs….I think my body is way out of line with it’s myelin attacking cells. I am upset but trying to keep my chin up. It is not the end of the world right?

I need time to reflect on some shortcomings I have not been so excited about. Need I say that I am a perfectionist by design, so the list is long and rediculoso by my own admission which says a lot. But I am finding myself yet again in a phase of transformation in my life. If there were an image that described it best, it would have to be the metamorphosis of a butterfly. When big changes loom overhead, overwhelming stress hangs in the balance. I have had a lot on my plate, figuratively speaking but I am still striving to be that better mom, wife, woman and dog owner. Life happens but mediocrity just isn’t my thing. Instead of keeping my shortcomings twirling through my white matter, I elect to reflect on a different topic each week and to hell with the rest. One thing at a time. Sometimes when you write things down, it changes your perspective for the better. Things tend to seem a lot worse when they are left to fester in your head. Photograph by Gregory Phillips.
WEEK #1 May 27, 2008
THIS WEEKS 1ST TUESDAY REFLECTION IS:
Procrastination |prəˌkrastəˈnā sh ən; prō-| noun
“Procrastination is the thief of time. Putting things off robs us of the opportunity to accomplish something.”
(From The New Dictionary of Cultural Literacy, Third Edition. 2002.)

What am I procrastinating about the most right now in my life?

* We started painting our kitchen a long time ago and it is still unfinished. I want to get it done because it’s ugly to look at right now..
* I want to find a new home for a pile of socks that has taken residence on my bedroom floor for the last 4 months that I’ve been stepping around.
* I need to make time to do my Yoga. I am rarely alone without the kids or the dog but I can make time if I want to do it for me.
* Dental check up.
* Gynecology check up.
* Oil change on one of our cars.
* Scanning & uploading my DL so I can sell my photography on IStock. Such a no brainer.

What can I do about it?

* Ask my mom and son to help me get it done next Sunday (hey mom!)
* Have a sock picking up & putting away party with all 3 kids tomorrow. Sugar free lollipops for all!
* After hunny gets home from work, the dog can stay outside and he said he will take all 3 kids to the Y to go swimming, which leaves me Yoga time. Fascinatingly easy.
* Call and make an appointment tomorrow morning.
* Call and make an appointment tomorrow morning.
* Take car in on Friday afternoon for an oil change.
* Scan in DL tonight, if too tired ask hunny for help. Go to IStocks website and sell away.

Wow. It seems so much easier when I put it like that. No tormenting involved. Whew. So, I leave you with an important question readers:

What are you procrastinating about the most right now in your life?

and

What can you do about it?

Thanks to Lisa over at Brass & Ivory for giving us all the heads up! Please copy & paste into a post on your own blog to spread the word if you can!

Rain Pryor is to sing Jazz Cabaret in Baltimore for MS Benefit.

Did you know that Rain Pryor, comedienne, actress, singer, author…
…now calls Baltimore home?
…is a mezzo-soprano who sings jazz?
…welcomed daughter Lotus Marie into the world on April 1, 2008?
…is committed to raising awareness, support, and funds for multiple sclerosis research?
…is performing a special one-night engagement at the Baltimore Hippodrome on June 6, 2008 at 8:00pm to benefit the Maryland Center for Multiple Sclerosis at the University of Maryland?

“Pryor Experience”
Jazz Cabaret with an eclectic collection of Jazz standards and straight ahead jazz, peppered with what Rain Pryor is known for, her own style of comedy and storytelling! As a bonus, Rain collaborates with local Blues Alley veteran, Keith Killgo, for this ‘not-to-be-missed’ Special Performance!
For tickets to Rain Pryor’s performance on June 6, 2008, at the Hippodrome, go to ticketmaster.com or call 1-800-551-SEAT.

RAIN PRYOR BRINGS MULTIPLE SCLEROSIS MISSION TO BALTIMORE
June 6th Hippodrome Show Will Benefit the Maryland Center for Multiple Sclerosis
Actress, comedienne, author and singer Rain Pryor is a dynamic and award-winning performer, known for roles on both stage and screen. She is also passionate about another role, as an educator and advocate for advances in fighting multiple sclerosis (MS), an illness that her father, comedian Richard Pryor, battled for nearly two decades. Now a Baltimore resident, Ms. Pryor will show her commitment to finding a cure for multiple sclerosis by presenting her one-woman show, “Pryor Experience,” at the Hippodrome theatre on June 6, 2008.
The jazz cabaret performance will benefit the Maryland Center for Multiple Sclerosis, a decades-long leader in patient care and innovative research, which is part of the University of Maryland Medical Center and the University of Maryland School of Medicine.
“Watching my father struggle with this debilitating disease had a profound effect on me,” explains Ms. Pryor. “I learned all I could about multiple sclerosis and made a commitment to do all I could to help MS patients and their families.”
She adds, “I am very excited to work with the Maryland Center for MS, having seen first hand the expertise and dedication of their team of doctors, nurses and researchers. They are committed to state-of-the-art, compassionate care for their patients and to innovative research to find better therapies to cure and prevent MS.”
“Rain Pryor is a passionate advocate for people with multiple sclerosis, and we are thrilled that she is bringing her talent, enthusiasm and energy to help our center,” says Walter Royal, III, M.D., director of the Maryland Center for Multiple Sclerosis and an associate professor of neurology at the University of Maryland School of Medicine.
“Ms. Pryor exhibits a real commitment to make a difference for people living with MS. During her visits with our patients, clinical staff and researchers, she has impressed us with her detailed knowledge of multiple sclerosis and her insightful questions about the disease and the progress of current research.”
Richard Pryor was diagnosed with MS in 1986 and died in December 2005. That same year, Ms. Pryor became a national ambassador for the National MS Society. In honor of her dad, she travels around the country speaking and performing to educate people about the disease, treatments and research.
Multiple sclerosis is a neurological disease that affects 400,000 Americans. It usually strikes young adults. Twice as many women as men have the disease. In MS, the person’s own immune cells attack the outer membrane covering, or myelin sheath, of nerves of the brain, spinal cord and optic nerves. This causes a wide range of symptoms including tingling, numbness, loss of strength, dizziness, fatigue and visual disturbances, such as double vision. The severity of MS varies greatly among individuals. While there is no cure, there are medications that can effectively suppress disease activity and can help patients manage symptoms.
The Maryland Center for Multiple Sclerosis offers patients the highest level of care through a multi-disciplinary team of specialists including physicians, nurses, therapists and social workers. Patients receive a comprehensive evaluation and have access to the latest treatment options, including opportunities to participate in clinical trials of new therapies. MS Center physicians include neurologists and neuro-ophthalmologists who specialize in treating MS patients. The MS center also offers physical, occupational and speech therapy, and assessment of swallowing problems through facilities at Kernan Hospital. Nurses also work with patients to educate them about multiple sclerosis and coordinate rehabilitative care and home health services.
The Maryland Center for MS also has a comprehensive, nationally recognized research program that tests new drugs and drug combinations and explores other areas of research, including Vitamin D and multiple sclerosis, the use of bone marrow-derived stem cells, novel rehabilitation approaches and the role of B cells and potassium channel function in MS.
In the 1990s, University of Maryland MS researchers were national leaders in testing two drugs, Betaseron and Copaxone, which are now widely prescribed in order to reduce the number of relapses and slow the progression of disability for people with MS. Currently, the center is involved in 16 clinical trials of medications for the treatment of multiple sclerosis.
Rain Pryor has been a performer her whole life and has had numerous parts in movies and television. In 2004, she created a one-woman show based on her life called “Fried Chicken and Latkes,” an award-winning production that explores issues of race and class from her perspective as a woman with an African American father and a Jewish mother.
Ms. Pryor also talks about her life in her book, “Jokes My Father Never Taught Me: Life, Love and Loss with Richard Pryor,” published in 2006. The book received nominations for an NAACP Image Award and the African American Literary Award.
For tickets to Rain Pryor’s performance on June 6, 2008, at the Hippodrome, go tohttp://www.ticketmaster.com/ or call 1-800-551-SEAT.

*please do not remark on my shitty spelling in this post. I am aware of it but do not feel like the point of this post is good grammar, punctuation or spelling. It is intended purely to inspire, humor, dismay and spark support for me because my life is tough right now. Please do ignore the syntax errors and accept my apoplogy (haha, apoplogy...I like that one.)

I have been on hiatus. The last time I used the word hiatus my son asked me, "Who ate us?". I have been pondering the brilliant idea of adding a section on this blog of mine called Literal Boy Corner. A page chock full of the musings of literal thinking Aspergerian adolescent children. Interesting tidbits that float past my ears, spewing through the mouth of babes...like the idea that if something is not evil, it's not wrong. Or that there really is a sweet tooth or a c-section incision is shaped like a letter c.

I am seriously thinking about it.

What has been going on with me? I have been in a sort of funk, not a fog but a mucky swamp of endless things to wade through. You know the saying people...when it rains it pours.

Last month things began to unravel for me on my birthday when I had my Bard Port A Cath implanted. It was more painful than I imagined, leaving me sore for about 2 weeks. The day after the port, my 2nd Tysabri infusion seemed to go well (minus a rash). However, the following 2 weeks my energy level which is already low became depleted and I felt more exhausted than I had in months. I have been trying to lay low in a futile attempt to recover my energy and stamina.

My 5 year old precious daughter Lilli cracked one of her molars on a Jolly Rancher Lolly Pop (NOTE TO PARENTS: do not allow your kids to eat these.) After taking her to the dentist, we were told the following:

1) the broken molar has to come out and they will put in a spacer.

2) she has developed small cavities between all of her molars in less than a year. They want to put stainless steel crowns on all 7 molars. That is not all, they want to put her under general anesthesia. She is not in pain, her cavities are NOT massive, they are just in a bad location to place a filling from what I am being told.

We did take her to a different dentist for a second opinion and even though we like him better, his treatment plan was pretty much the same, unfortunately.

Soooo....after days of research, discussion and prayers we have decided to get the broken molar pulled because it can cause an abcess if left in there. We have also decided to brush & floss her teeth after every meal & snack; deciding to wait until her cavities demand the aggressive treatment they recommend, which they do not right now, in our opinion. So, she will keep her natural teeth for the time being. We have just been in shock because we take very good care of her teeth, she has always had regular dental care and a healthy & low sugar (rare candy intake) diet. The dentist said her molars are very tight and that baby teeth are very soft but I still don't get it. I also do not understand why so many dental practices do not allow parents in the treatment area. This ordeal has been an eye opener to say the least.

My same sweet Lilli developed a small blueish/blackish mole on her left cheekbone this past week. It is a little bigger than the size of the head of a pin, maybe 2-3 mm. It's about 4 inches away from another mole on her jaw line. This past January & February I had 8 atypical moles biopsied. When abnormal cells were found, more biopsies were done to remove all the abnormal cells. I learned a lot about Melanoma, moles, skin care and when to get suspicious moles evaluated. I just never heard of a blue mole before! It isn't like I am a paranoid mom, always on the lookout for reasons to be worried. So you can imagine, I'm very shocked to be seeing this on her face right now. She has an appointment tomorrow with her Pediatrician to get it checked out. Better yet, since my 6 month follow up with my Dermatologist is actually aright after her appointment (and ironically in the SAME building) I am taking her in the exam room with me to ask my Dr to take a peek at it.

I have seen 3 different Dr's this past month as well. An Ortho, a Uro and an Ortho Spine Surgeon. I have had catheters placed where the sun doesn't shine, a shot under my knee cap, x rays and am having my 3rd Tysabri infusion done today. The jury is still out on my spine, with an MRI with contrast and a CT Scan with Reconstruction to be done this Wednesday. The Uro doc said my bladder is working independently of my brain and he put on a med for overactive bladder. He seems to be stumped about the occasional retention issue but dilated the opening to my bladder which hurt like hellllll-o and has not really helped. Neither has the medication.

As a matter of fact, right this minute, I am having my Tysabri Infusion at TN Oncology. I have had to pee 3 times in one hour and I have to pee again. MS sucks. I really do not want to have to ask the nurse to disconnect my IV again so I can go to the restroom. Plus I have the added bonus of being the only one out of 9 patients in the Infusion Center right now who has even used the bathroom in the past hour, let alone 3 times (soon to be 4).

Aaaahhhh...that wasn't so bad. I asked a different nurse. I cope whatever way I can ;0) AND I did not scan the room to see who was noticing I was using the bathroom.....again. I decided I do not care anymore. I can't help it if my nerves do not communicate. Psychotherapy will not help these kind of communication issues. Tysabri hardly helps. Come to think of it nothing hardly helps.

Which brings me to the clincher, quite literally. A muscle clincher...

This past Saturday morning started off nice although when I woke up my left leg felt a bit stiff. I made breakfast, did my daughters hair all purty, got her ready for ballet class and then after she and my husband left I laid down on the floor to play Solitaire on the computer. I was lying on my right side when I decided I was finished with my game. I tried to move my legs to get into a sitting position but my left leg decided it wanted to do something differently. It began to spasm; contorting my foot into painful & unnatural L shape. It stayed that way for what seemed like an eternity but was actually about 15 minutes. About 5 minutes into it, I realized I needed help. I asked my 11 year old Kaine to go get my 15 year old Khy for downstairs. When he came up into the living room, I was crying in agony on the floor. I had him get the medication that I was prescribed a few months ago but I had not taken yet (called Tyzanidine). I immediately took one and my dear son tried everything he could to help me until the spasm went away. A pillow, trying to stretch my foot & leg (would not budge). Finally, my foot, leg and hip relaxed, my pain subsided and I called my husband in tears. I felt very shaken up. I then called my Neurologist. I had the answering service page him. While I was speaking to the person with the answering service, another spasm happened. I could hardly speak or get the words out through my tears.

When my neurologist called back he told me he thought I should go to the ER. I asked him if the Tyzanidine helped, could I avoid a trip to the ER and see him on Monday? He said that would be alright if the spasms stopped. Well, need I say that I am stubborn? I do not like ER's? I have 3 kids? My husband had to work that day? Chronic illness is not managed well in a ER?

I had about 18 full blown spasms on Saturday. Some while I slept Saturday night, woke me up from a deep sleep & brought me to tears in the middle of the night. I only took one dose of the Tyzanidine after all because I became very dizzy and when I checked my blood pressure, it was down to the 70's/40's. At it's best that afternoon it was 82/56. I called the pharmacist and he said to stop taking it immediately. Because I knew Baclofen worked ok for me in the past and I had a full bottle, I started it right away. By Sunday morning my spasms were isolated to my calf muscle & were painful but tolerable. I realized I would be able to make it until Monday. Whew.

Would you guess that they were late starting my Tysabri, so now I cannot see my Neuro until after he gets back from lunch? At 1pm? And my hunny has to leave for work by 1:20pm? I sure hope all this works out. Last week, he was late to work 2 times due to my health or Dr's appointments. Guilt does not even describe how I feel when my helath impacts his job. Embarrassment maybe?

The good news is that tomorrow, at 8am my hunny is dropping off my car at the place to get the lift installed. Yes friends, family....cyber strangers.... voyeurs....efans....lurkers & supporters. I am getting my independence back...TOMORROW.

WOOOOOOHOOOOOOOOOO!!!!!!!!!!!!!!!!!!!

Nothing else I am going through really matters when my future is as bright as it is right now.

The following is dedicated to my hunny for being my wheels, my lift, my salvation in such ridiculously trying times. I love you baby.

"The eagle wants a canyon and a place where he can rest his wings awhile.
The drifter wants a freight train that will carry him another hundred miles.
The lion's only lookin' for somethin' he can sink his teeth into.
Oh and I.....I....want you.
Now..now..now, now.
The devil wants a fella with a weakness he can wrap his arms around.
Tha champion wants a challenger who just might have the strength to take him down.
The river wants an ocean to run towards and pour its heart into.
Oh and I...I...want you.
Oh and I...I...want you.
Oh everytime that I'm around you,
Oh I'm on fire when we touch.
Oh when I hold you boy you know I jus can't get close enough.
Yes, I want you.
I could cry and say I need you .
Tell that you I die when you're not here.
I could lie and say I love you
Pour a little poison in your ear.
But all I'm gonna give you is
Nothin' but the bare naked truth
Baby...I want you.
Baby...I want you."
I want You
-Faith Hill

Dear Mom,

You could have never explained to me what it was like to be a mother. I would have never been able to grasp it through the common words used to describe motherhood. There are no words to describe what it must have been like for you to decide to foster a child when you already had 3 of your own. No powerful words can sum up what emotion ran through your veins the night you became a single parent, deciding you would no longer be a punching bag for our drunk dad. No wise words can encompass how a mom is supposed to handle the issues of rape, drug use, gangs, sex, and molestation. There simply are no words. It is an endless dry river bed.

A mother does what she knows how to do...her best and no more. No words can match with sincere conviction the truth that motherhood does not involve hindsight, no 20/20. It is imperative to make the best choices & decisions at each moment, in each situation....for the effects & consequences are long lasting & far reaching. A mother's 20/20 hindsight is called an apology; a lesson learned. No verbiage could have described that to me in such detail that I would comprehend it's depth. You do your best & when it's not enough? You learn, you apologize with your heart on your sleeve...that's it. There is no magic cure to heal the pain caused when you fall short as a mother.

Giving birth to 3 children of my own, has given me an insight into the unique human experience of motherhood. Without words & through experience, I have come to understand you. I have come to forgive you for all that never actually needed forgiving. When I look back now...I see you as a woman having the human experience of motherhood...having the courage to go it alone vs staying with an abusive alcoholic; tirelessly working 2-3 jobs at a time to stay off welfare; unconditionally loving & caring for more children than you gave birth to (because that is who you are); nurturing love, creativity & inspiration in all little children; humbly seeking out a support network instead of falling apart and all the while facing chronic illness one day at a time.

I just want you to know that the past few years of my own motherhood journey, (illness, adolescence, puberty, teenage initiations & the next stop...kindergarten) have given me a deeper sense of connection to you, as a person but also as my mom. I do not look back at the past the same way anymore. My childhood has forever been transformed in a positive way by my new perspective of you.

Lately, I find myself laying down after a hard day, on my own with 3 kids vying for my time. Mikel is at work, dinner needs to be made, money is running low again, the puppy needs to go outside and I don't have the energy for any of it...that is when I think of you. I ask myself, "How did she do it?" You didn't have a Mikel, a nice house or full refrigerator....you were working 2 jobs, had no car, a slim bank account and had to come home on the public bus with 12 bags of groceries to feed 4 hungry teenagers going through each of their own crisis'. Now, I get it that you were tired, overwhelmed, probably lonely, under appreciated and in physical pain. I admit, that was not how I experienced it as a teenager. However, my memories have changed entirely as I recall my childhood as a mother.

I love you Mom. I thank you for bravely raising us without dad in Hollywood of all places; taking us on those long bus rides to the beach; griffith park; Bronson Caves; Thrifty's ice cream; the YMCA swimming pool; YMCA summer camp; Alateen; Magnet Schools; Chicken Enchilladas; Jean Pollacheck; teaching me about snails; Barnsdall; arts & crafts; road trips; getting lost; my first pair of Jordache Jeans from the Beverly Center; all the handmade special birthday cakes; mirror tiles in the living room; Paradise Cove; Do Re Mi; Sanrio; Santa Clause; the Easter Bunny; the Tooth Fairy; punching that guy who whistled at me on the corner or Van Ness & Melrose; being supportive when I became pregnant at age 17; loving your grandkids excessively; your generosity; teaching me how to knit & crochet; teaching me tolerance & unconditional love; showing me tolerance & unconditional love and most importantly...thank you for your best, it has not gone unnoticed.

I love you Mom... Happy Mothers Day (week)!

Love,

Ammey