Dear Mom

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

Uh oh.

It’s funny how the problem in this spine of mine seems to have the very same expression I had when I first saw it today on xray. You probably notice my scoliosis right away. Well…go down to my sacrum (tailbone).

Do you see the Uh Oh? 2 lines for eyes, 1 line for a nose and a round open mouth? The 3 lines happen to be parts of cages that should not be visible right now. The round thing? It’s a bolt.

After an Anterior Fusion with cages, the bone grafts within the cages are supposed to grow and fuse the 2 vertebrae together. It has been two years and nope, you can still see them which means I am headed back to surgery in the near future. I have not fused. I will not get into the details right now about why all this happened but lets just say it has a little to do with everything. I see the Ortho next Thursday.

I could use all the prayers I could get right now. Last time I had this surgery I was in the Hospital 4 weeks.

Arrrrgghhhhhh!

Vanilla Creme Brulee French Toast

So, what do you do with all of that leftover Challah?

Try out another one of my adapted recipes

(w/my recipe photo journal) that will make your mouth water!

WARNING!

This recipe is not for anyone who is afraid of taking pleasure

in a little high calorie food (in moderation people!).

 

Vanilla Creme Brulee French Toast

This is my adaptation of a recipe from Epicurious.com

INGREDIENTS

1 stick butter (1/2 cup)

1 cup packed brown sugar

2 tablespoons real maple syrup

1 loaf Challah bread

5 large eggs

3/4 cup whole cream

3/4 cup 2 % milk

2 teaspoons good vanilla

1/4 teaspoon salt

PREPARATION

Melt butter, brown sugar & maple syrup in a saucepan over medium heat. Stir constantly until sugar is dissolved and sauce is smooth. Pour brown sugar sauce into a 13×9 glass baking dish.

Slice Challah into 16 1 inch slices. Fit the slices into the baking dish in 2 layers. You may end up with an extra slice, just cube it up and fit it into the small spaces. It is perfect if the pieces fit together tight. Remember to improvise!

Whisk the cream, milk, eggs, vanilla & salt together. Pour over the bread slices, make sure the surface of each piece of challah gets wet. Now comes the fun part…

With clean hands, gently press the bread slices, like sponges, they will soak up the cream & egg mixture.

Now you can chill for up to a day or bake it right away.

Preheat oven to 350° F. If bread was in the fridge, let it come to room temperature.Bake for 30-35 minutes until golden brown and you see the sauce making little bubblies around the corners.

Serve right away, with a little cream & maybe even some fresh berries.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The waterworks saga cont’d…

My Urology appointment yesterday was brief and to the point. The first question the Dr asked me was how old was I and he commented how much ink there was on the paper; pointing out the obvious, that I have been through quite a bit for my age. Yes I have. Unfortunately. He asked me many questions about my bladder symptoms. After I answered all of his questions he explained that there is definitely something neuroligical going on. He went even further, explaining that with all of my spine problems, MS and Autonomic Dysfunction, Lupus, why wouldn’t my bladder be affected?

Ok. That makes sense. He said that he wants to run some tests to see what my urological functioning actually is. I will be going back on the 13th of May for Urodynamic Testing and also a Cystoscopy. He told me that the concern with my symptoms is whether my bladder is starting to shut down. That will mean that I will have to empty my own bladder via self-catheterization BUT with my mobility issues there is a lot to discuss basically (how can I actually do it?). The tests will give a better picture of what the underlying factors are in my bladder dysfunction. Ok. Deep breath. Pray.

My husband is noticeably upset about all of this, he does not want me to be going through this. Quite honestly I do not blame him. Who wants to think about seeing their wife like this? The Urologist also instructed me to see the Neurosurgeon or an Orthopaedic Dr asap to have an MRI on my spine. He very strongly urged me to get to one right away. Could he tell that I have been avoiding it? 

Having to see the Rheumatologist this Thursday, the Ortho Dr on May 8th, and this Urological testing done on May13th…my hunny & I are frustrated. We just do not have the time, gas money or energy to make all of these appointments. In the month of May, my daughter also has a dental appointment (expect a post on that issue), my middle child sees the Sleep Specialist on May 25th and my oldest has to go back to a Neurologist because his migraines are flaring up again. 

I need HELP! An extra driver, a maid, a secret bank account, an extra day in the month, hour in the day, a nap. Can you guess what I am going to do today to get through the stress? It does not involve liquor. I am going to bake bread, muffins and fresh applesauce with my little girl. It is my therapy and special time with my Lilli.

Life does go on from here…

Food For Thought

“Not all who wander are lost…”

J.R.R. Tolkein

I just wanna…

pee. I am so stressed out about this retention issue. I am afraid to wake up tomorrow in pain, unable to pee. I can’t sleep. I tried to ease my mind by looking up some info on my Neurogenic Bladder on the internet and it has only made matters worse. I know better. Now I have the images of past foley experiences running circles in my mind. Imagining self cathing is not helping my insomnia. How strange is it to be so exhausted but you can’t sleep?I have been so tired this week from the Tysabri, it has caused some not so good fluctuations in my blood pressure which already drops too low. I am dizzy and clammy and shaky and t-i-r-e-d. So I am whining here and I know it. I feel like a baby actually, maybe even a 3 year old kicking and screaming on the floor. I don’t want to be going through this crap. I am sick of Dr appointments, hospitals and meds. I want a break from this MS, Spine and Body of mine. I could take a break but where would that leave me. No, I know I have to deal with this bladder of mine, and if my spine is a culprit, it has to be dealt with. Ignoring it will not make it better.

Waa…waa.waaa.waa.waaaaaaaah! Here my crying yet? Oh what I would give for a blankie and a good snuggle right now. I am ok, I really am, I just feel a little beaten down physically which is draining my mental & emotional facilities too. I think I am going to try to do my Dahn Yoga DVD For MS tomorrow if I am up to it. Maybe a little of that and a cup of tea will do me a world of good.

This physical medicine doc I used to have, who never gave up on me, told me at my very first visit with him “If you were a horse they’d shoot you.”

Yup. That pretty much sums up how I feel right now.

Super Easy Rustic Bread!

What Ingredients will I need?

3 cups Bread or All Purpose Flour +more for dusting

1/4 tsp. active dry yeast (buy in bulk from Costco!)

1 1/4 tsp fine sea salt

1 1/2 cups water (Spring water is best)

2 tablespoons olive oil

1/4 cup white corn meal

Cast Iron Dutch Oven with Lid

What do I do now?

That’s easy! I start this recipe at about 12 noon to 3 pm so I can finish it off the next morning. It has to sit for 18 hours and do it’s thang!

In a medium/large sized glass/plastic bowl:

1. Add 3 cups flour
2. Add 1/4 teaspoon yeast
3. Add 1 1/4 teaspoon sea salt
4. Combine well with wooden or plastic spoon (or hands!)
5. Add 1 1/2 cups spring water
6. Stir just until moistened. The dough will be very sticky!
7. Loosely cover with plastic. I like to think green and re-use a plastic grocery or produce bag.
8. Set aside in a warm location like the top of the fridge or Microwave, or on the counter is fine too.
9. Set the timer for 18 hours.
10. Wait

18 hours later…

1. Sprinkle clean counter or cutting board with flour, about 1/4 cup.
2. Turn out sticky dough from bowl onto the flour.
3. Gently press/pat down dough, NO KNEADING!
4. Fold in 1/3’s like an envelope.
5. Fold in 1/3’s one more time, opposite direction.
6. Coat clean bowl with 2 tablespoons of olive oil.
7. Place dough in bowl. Sprinkle with white corn meal.
8. Turn dough over once to coat evenly. Sprinkle with white corn meal again.
9. Cover in plastic AGAIN.
10. Leave it alone for 2 hours

1 hour later…

1. Preheat Dutch Oven and Lid to 500°F for 60 minutes.

1 hour later…

1. Carefully turn dough from bowl into dutch oven. (If it sticks to the bowl, gently use fingers to loosen the edges of the dough from the bowl.)
2. Put that lid on, it’s important!
3. Bake at 500°F for 15 minutes.
4. Reduce temp. to 450°F and bake for another 10 minutes.
5. Remove the lid.
6. Reduce temp. once more to 400°F and bake for 10 minutes longer.

  

Remove from oven, cool on a wire rack. Slice, butter, jam and enjoy! It is great with sandwiches too!

 

 

 

 

Rash? Improvement? Worse AGAIN?!

Well, the 3rd day after the Port, the 2nd day after the Tysabri, I developed an unusual rash on my neck and chest. It is not likely due to the Port, so says the Radiologist. The Neurologists says that Tysabri rashes are usually all over the body. I will be calling the Tysabri Touch Program to ask them on Monday though.

One thing I am suspicious of is Latex. I always get redness and swelling just where band-aids touch my skin but this time I had gotten a blister where a dressing was. I have to wonder whether this could be a reaction to latex. I will certainly be discussing it with my Dr’s soon.

About 12 hours after my Tysabri was over, I noticed that this Icy Hot numbness in my right knee, calf, thigh and toes had almost disappeared. My bladder issues improved also. Until yesterday morning that is. So a total of 4 days with improvement. My neurologist was not sure at my last appt. whether the symptoms in my right leg are MS related due to the fact that I have a lumbar spinal problem and fusion there as well. So we were waiting to see the Ortho Doc to see what he thought. Since I had improvement for 4 days on the Tysabri, it makes me wonder whether these new symptoms are an MS relapse.

I woke up yesterday and guess what? I could not pee again. I know, TMI, but I can’t keep it in, literally. It was unbearably painful until I could get a stream going. I see the Urologist on Tuesday this coming week and I am hoping they can explain it all to me. The coincidence is that the Urinary Retention came back the same day the leg symptoms came back. Interesting. Is it my back or my MS; my back or my MS; my back or my MS?

It all gets a little irritating. I just want to pee and walk. That isn’t too much too ask is it ?

Me and my Son

This photo was taken by my 5 year old but I edited it in Photoshop to create an artsy piece. She did a god job getting us both in the frame.

Holla!

A photo journal of my rampant bread making adventures. Here you will see the process of making Challah. A delish sweet egg bread.

Photography ©Ammey Kohen