Yes I'm a Mormon too!

I just had to share that. I'm not perfect but who is. It is because of my faith I am who I am today. I love life. I love to cook and craft especially more so, now that I can use my hands. I love people, and I love to be of service and share whenever possible. I love the principles of this church. I love Jesus Christ, my Savior. I love the Gospel and I love finding beauty in all that I see.

I have had many obstacles in my life. Tumbling all the time. Sister Turley, a member of our church once told me several years ago, that I was like a diamond in the rough. All that tumbling will make me shine like a diamond. I always liked that analogy. It made me feel good because I just knew with all the tumbling I was going to shine bright in the end. I just had to. I'm talking spiritual happiness.

I remember the first time I went to the temple. It was supposed to be one of the happiest days of my life. I was truly happy, but really sick. I had to take over 300 pills a month to function somewhat normally. So needless to say, now that i think of it, it was a blur. Sixty or more pounds heavier, my happiest day at the temple was spent going to the bathroom 5 times and trying hard not to dose off. I want a do over!

A do-over I cannot have, but once again when I am temple worthy I am looking forward to experience walking in that temple completely intact, without all those medications. I never been there unmedicated. Being able to hold my head up without straining. I want to experience this now, while I feel so alive and well. I can hardly wait. But patience is a virtue.

I haven't been able to attend my ward because I have other medical issues.  However, I feel like it is going to happen real soon.  Praise God.  I am quite happy now, but I do know I was at my happiest being with my fellow Christians. Just being a part of something truly wonderful. I am grateful because I know that I am on the road to recovery to a better me all the way around.

I'm just rambling on, my depression finally lifted after three months. By the way, tremors and depression go together like peanut butter and jelly. I have not been able to leave my apartment for the last three months alone.  Not even to check the mail.  I did go out and check the mail two days ago.  Yay!  I did say it was progress, not perfection right?

Anyway, I wanted to leave you with one of my favorite verses. Thanks for stopping by.  Feel free to visit any of my other posts here on this blog or any of my other blogs.  If you have any questions, ask away.  So till the next time, stay safe and, many blessings:)

Sincerely,

Mary Helen

MY RECOVERY WITH KOMBUCHA

Since my surgery almost three years ago, I
 have lost over 60 pounds and feel so alive
most of the time.  I still deal with major
depression that lasts for months at a time,
and for no reason.  But, it's progress
not perfection.  I am so grateful, I feel
beautiful and blessed to be free.  I had
no idea how sweet life really is to be
normal.

FYI, Here is an earlier post on one of my other blogs, Mary Helens Test Kitchen.  Just thought I would re-post here and share since it discusses my tremors and my recovery

Hi everyone yes Kombucha has arrived to Mary Helen's Test Kitchen, here in Hollywood.  My goal is to share this wonderful Probiotic elixer with my family, friends, and neighbors. All with the hopes of sparking an interest in probiotics as alternative to medicine.  I'm not saying stop taking your medicine by all means no. Just start by adding this to your diet little by little.  See what happens after you use it for a while.  Ask yourself.  Do you really feel better? Stronger? Pain free?   Although I have been brewing kombucha a few months, I consider myself knowledgeable enough to share with you my findings as I've done a lot of research and a lot of brews and experiments.  I always have a variety of kombucha's brewing at one time.  My SCOBY (Symbiotic Culture Of Bacteria and Yeast) are all happy campers and love their, ginger, hibiscus, dandilions, and apple juice, etc. Their is no end.

My SCOBY arrived in a quart size jar and was the same diameter of the jar, just as described.  Earlier I had purchased a six gallon plastic beverage container. which I washed and rinsed well, then a double rinse with vinegar. I also had my green tea brewed and sweetened.  My SCOBY was in it's new home. I put this in a warm spot undisturbed and in 5 days I had my first gallon of kombucha.  Now because of the diameter of my 6 gallon container the diameter is larger.  This means my SCOBY is larger too.  As it takes up the diameter  Note: The plastic containers must read #1 or #2.  This number can be found at the bottom of the plastic container inside a triangle.  Also note that the kombucha does not have time to leach anything from the plastic because it is removed within a few days and it is not yet as acetic.  However, kombucha does turns into vinegar quickly, so I would recommend once it has fermented, store it in glass containers with plastic lids just to be safe.  By the time it vinegars it is known as a powerhouse of nutrition.  The cultured probiotics  multiplies as each hour passes.  A glass first thing in the morning is an excellent way to really wake up and start your day.  It wakes up every nerve in your body for sure with its tangy, slight vinegar taste alone. I like to add a very strong dose of cayenne pepper and garlic to my breakfast Kombucha drink.  Not to mention the fact you are feeding your body's cells live food.  This is cellular nutrition and rejuventation!  I started  drinking one half cup 3 times a day.  After a few days,  I went to drinking one cup 3-4 times a day.  I also drink Water Kifer and Milk Kifer.  I have a variety of probiotics going through my body all day long.  How do I feel after almost one year of probiotics?

Well, first of all I used to take about 200 pills a month.  And I still felt sick.  I was always watching my fat, and was on some sort of diabetic diet. Yet  I looked and felt very sick and quite toxic.  I even had my own power=chair equipted with a oxygen tank holder.  Yeah they pimped my ride alright.  LOL.  I had given up on life, felt hopelessly despaired, and doomed to die.  I was diabetic, I had high blood pressure, and high cholesterol.  It created neuropathy, which meant my legs gave out a lot. This was only naming a few of the illnesses.  I got bigger and bigger.  It seemed like I was losing the battle quite rapidly.  I also forgot to mention that I was born with essential tremors, which mine were severe.  They progress with age, and at this time I was in constant seizure mode.  I could no longer feed myself with a fork, for fear of stabbing my face.  Yup, ouch.  Their were a lot of things I could no longer do, like cook or hold a knife or brush my teeth.  Everything was 100 times harder.  But I had no other choice but to continue one day at a time.   My own body had become a hazard to my health.

My life changed when I  pursued the God I knew.  I won a lottery to my beautiful apartment in Hollywood.  It was a chain of events for the positive. I had two brain surgeries by a wonderful neurosurgeon at Cedars Sinai .  His name is Dr. Adam Mamelak if anyone is interested.  Today among many other things  I am temporarily tremor free.  Today I am able to write..hahaha.  Look ma I'm writing, and I'm walking too.:))

I came here in a wheel chair almost 2 years ago. and today I am medication free!  All my blood tests came out very good.  My A1C sugar is less than 6.  No sign of diabetes, or anything else.  Besides my breathing.  I am walking all over town...sometimes running to catch a bus or to get to an event on time. My energy level has increased so much, I lost 40 lbs.  My brain feels so "let's go find out".  My body says, let's get busy.  There are not enough hours in the day to do all that I do.  So I do a lot in my 18 hour no more nap days.  So my answer is yes I do feel better drinking my homemade kombucha, and milk and water kifers.  A LOT BETTER!  Thank Godl

THANK GOD FOR BRAIN SURGERY

Me today 4//17/2013  Age 63.98  haha.
Yes I do have a sense of humor after all
these years.  Thank God!

Remember that video I said I would take of me and my tremors. Here it is. Imagine living like that 24/7 every day of your life. At least now I get a daily break right? Thank God! I'm such a happy camper. My doctor said this is a good idea to let others who deal with a variety of tremors, that there is hope. This surgery works for Parkinson's tremors as well.  My tremors are called Essential Tremors. I was born with them and they progress with age. Enough said. Here goes.

Aha!   Now you know why I am such a grateful happy camper!  I can use my hands and my body including my lungs is less stressed.   Isn't this absolutely amazingly wonderful?  I love all my doctors, God Bless them and keep them safe.  Today, I use my hands all the time.  Because now I can.  Well,  I could before, just not so gracefully.

If you know anyone who tremors, pass this along and feel free to share this or any of my other blogs or posts and see how I use my hands.  Ask your doctor to refer you to someone who knows about this procedure.  There is hope because there is help. Once again, thank you for allowing me to be of service.  Peace be with you and God Bless you all.

Sincerely,

Mary Helen

TREMORS = ISOLATION = DEPRESSION

Today I still can produce nice crafts even with minor tremors.  I'ts better
than just being a couch potato like I was before.

Okay so today I share another part of my life and what I deal with.  I am almost not yet 64.  Lol.  I am diagnosed with major depression, I tend to isolate...a lot.  And I was born with essential tremors that has definitely progressed with age.  What a vicious cycle that has been for me.  And  you wouldn't know because most of you have never walked in my shoes.

I never really knew I had tremors until I was in Junior High (Middle School).  I do remember my mom yelling at me often to quit shaking at a very young age of 5 on up.  But I never noticed them, felt them in my belly deep inside. I realized I had no control at age 13.  So, I began to isolate at an early age.

During recess I would run to the girls bathroom and hide.  At lunch time I would pack a lunch and eat walking towards an isolated area, then find the nearest bathroom until lunch was over.  How I longed to sit and eat with my friends in the cafeteria or with a group at a table.  I had spent my elementary years being bullied, and didn't want this to happen in my new school.  So I hid for fear of being made fun of.  Besides by that time I could not always hold food on my fork.  Nor could I make a drink straight to my lips without making a mess.  And to think I thought this was normal.  Lol, now I can laugh about it.  Thank God.


I thought this was normal because my mom shook a lot.  My younger brother also shook, but not as bad as I.  So in my life tremors, shaking and jerking was the norm. I would laugh sometimes, and said I was doing a new dance called the "Shake Rattle And Roll".  I didn't really see it as odd or a disability because we still had to function.  Tremor or not.  If we didn't do our chores, we would all get our butt's whipped.   Back in my day it was allowed.  Glad that is no longer the norm.  As I got older I had to work to pay rent and bills right.  Isn't that the norm?

Anyway, I  can  really see how the TREMORS = ISOLATION = DEPRESSION can link with one another.  I really don't feel depressed because I stay busy but I also have the Lord in my life.  I guess my body recognizes depression as a safe mode. I will say that since my DBS implant my tremors and depression are much better. I still deal with the isolation part.  It's still not good, but I am working on it.  I live in a high rise building and find it very difficult to get past my door.  The mail room is on this floor but on the other side of this building.  I've made it there 3 times this month.  I have to be really needy for something to get out my door. I am single and have dated only once in 20+ years.

So my tremors have caused me major depression and isolation.  I am not complaining at all.  I feel I am right where I am supposed to be.  I am on this journey of life for a reason.  Today, I feel the need to share what it's been like, and where I am now since my DBS implant.  I am not sure where I am going but I know it's going to only get better.  I really do love to get out, when I am with a family member or a friend.  I laugh and really enjoy my company to the fullest.  It's the getting out the door that's not easy for me.  Good thing I believe in miracles.  I am a miracle.  If you only knew:)  Till then,  Many blessings.

Sincerely,

Mary Helen

Finding Mr.Right

I am so excited to say, I found Mr.Right! Yes the right Doctor. I had my appointment with my new neurologist in Beverly Hills. I love it when you can find the a doctor who is in their profession for the right reason.  I've worked for many doctors, and have seen many doctors for years now.  It's sad to say that some are in the business for monetary reasons, and have not much interest in their patients well being.  But that's life I guess.  Good thing is, I get to choose my doctor.  Just because they are referred does not mean I have to keep going back.  Usually I just never go back.  Not this time.  Again I am grateful because my tremors were getting out of hand again.

Here is the same beer bottle in 3 stages of scribbling with my permanent markers because that's all I could do.

Today, my tremors worked for me.  Thank God.  Some days are worse than other days. I 

always tremor, no matter what. But, they have improved tremendously with my brain implant. 

On the days I tremor more, I don't mold, or play with fire so to speak. Or I don't paint,

 because of too many do overs. Today I thought I'd go with the grain, instead of against it. 

 My tremors that is.

Last Monday I was squeezed in to see Dr. Nicholas R Szumski (pronounced "some-ski) on an urgent basis because my tremors were getting out of control and was causing major muscle discomfort.  When I tremor, every muscle in my body become spasmodic and goes to the "rigid" mode.  Not fun.  My left hand was jerking uncontrollably, and my right hand was less severe with tremors and mild jerks.  Not to say that it was good, because by no means tremors alone  makes doing the simplest task almost impossible or difficult.  Thank God I had my brain surgery to have that Deep Brain Stimulation (DBS) implant two years ago.  Now I has to see a movement specialist to adjust my settings.

Dr Szumski is a Neurologist who is a movement specialist.  I was so glad to meet him, as I felt he was glad to meet me.  OK, So before I said I turn my DBS off and on every night to save my internal "brain pacemaker" battery.  Well, I am supposed to turn it off every night, but when I turn it on in the morning the jolt that shoots thought out my body is quite a charge and leaves me limp and unable to speak for a few minutes.  Sometimes, even hours.  So, I was leaving it on most of the time.  Oops, he was able to track my history. I didn't lie, I just didn't do what I was supposed to do. I didn't know that.  I also learned that folks with major tremors tend to lose their balance.  No wonder, sometimes I lose my balance, and sometimes look like I was drunk.

He had me do several tests with my DBS off.  They are quite simple for most of you I am sure. Like hold a cup of water, pour a cup of water into another cup.  Next test was to hold the cup of water to my face and drink.  I failed terribly at all of them because I was not able to do any of them with the DBS off.  Ugh.  I felt terrible again.  The full body tremors immediately began when he turned it off.  My head with the major yes yes nod giving me major whip lash.  My hands became useless once again, and my legs felt like putty.  By the time he finished adjusting it to a much better but not perfect, range.  My body felt like it had gone through a 20k marathon. I have been down most of the week since then.  But now I am turning it off regularly.  It is difficult for me to push the buttons, but I have a personal care assistant who helps me turn it on daily, and get over that jolt of electricity.

We also talked about occupational therapy to deal with the tremors because there is equipment, and utensils that do help but not much in my case.  Except for the adult sippy cup.  I still have my sippy cup which I put away and out of reach on top of the kitchen cabinet.  Hehe.  But, I will look into any help I can get.  Who knows, maybe I can learn something new.

We talked about looking into bio feedback because my body tends stay tight even when I am relaxed and feeling great.  Dr. Szumski said that since I was born with tremors I have probably taught my body at age 3 to tighten and hold my breath to deal with the tremors. That probably also explains why my face, and limbs get numb.  So now at almost 64 years I will try to unlearn some old behavior.  Like holding my breath to get that needed umph just to try and hold my body steady.  Hmm.  Interesting.

All in all it was a very good long over due visit.  I think we both learned something.  He learned something about me.  And I learned that he is a wonderful caring doctor.  I will make a follow up appointment in two weeks.  Again since he is booked forever, they will squeeze me in.  How fortunate I am.  I feel so blessed for all that I have.

I mentioned to him how I don't sleep but 5-6 hours each night.  I stay busy doing things with my hands like, cooking, crafting and writing.  I unlike most folks never had the opportunity to have a pair of hands that could do what I wanted them to do.  Needless to say, I never let that stop me.  Yes maybe I have to try and try and try until I get it done.  But today, I get to use this wonderful gift I was blessed with.  I am a grateful happy camper.

This was Dr  Szumski and my first session together, so we didn't expect it to be perfect like right after I had the surgery.  But it is much better  today than I was before I saw my doctor.  I am looking forward to meeting with Mr. Right again, my Dr. Szumski.  Well that's about it for now.  It's after 3 am.  Goodnight all.  Many Blessings.

Sincerely,

Mary Helen

Living with tremors today 2/11/13

Another day of tremors. They are getting worse daily. I can see it, more so , I can feel it.  Wow I haven't experienced this since I've had that DBS (Deep brain stimulation) implant 2 1/2 years ago.

I feel so medicated from yesterday's pill that I really don't want to take another sedative today.  But in order to do my basic functions, not cooking or crafting, I must. It not only sedates me but it affects my breathing too. That, I don't need.  It kills my energy.  My inners are trembling and makes me feel uncomfortable, even nauseous.

Tremors are quite straining as I use what muscle I have to try and steady my hands, head and legs. For some reason I have a bad habit of holding my breath while I attempt to do something (as if that is going to help). I find that I am always unintentionally holding my breath.  Even the simplest of tasks which are done by anyone, usually without thinking have to become a plan as to how can I do it safely if possible.

So today I made that phone call to schedule an appointment with the new Neurologist who is a movement specialist.  There are no immediate openings, but she will call me as soon as there is an opening and squeeze me in as urgent. Thank God.  I've sliced my hand twice recently in the kitchen doing simple things.  I pray that it is just a minor remote control adjustment.  Oh yes, I forgot to mention that with this implant, it comes with a remote control.  I turn it off every night right before bed to save on the internal battery.  Immediately upon awakening I turn it on so I can function.  When I do turn it on I have to remain sitting as a strong jolt of electricity surges through my body.  Sometimes it curls my tongue.  But after a few minutes I am ready for anything. Haha, I like to call anything I do, my adventures.  Anyway, that internal battery that is implanted in my chest is like a pacemaker.  Actually it is a pacemaker but for the brain.  This battery is good for 5 years.  It's only been 2 1/2 years.

Only problem is now that I can use my hands, I don't sleep much.  LOL, I am so grateful for having been given back these gifts that I use them every minute of the day.  I sleep no more than 5-6 hours daily ready for my next adventure with the use of my hands.  For example, like blogging.  I couldn't type before because I couldn't use my hands. Now, I cook, craft and blog.  Because today I can.  If you scroll up and look to the right you can see some of my work titled, Things I Can Do With Tremors. I am so grateful for all that I can do that I believe one way to give would be to share my knowledge.  At 63, we do have knowledge right?  Thank God.  I pray it's just a minor adjustment.  Anyway, Many Blessing to you.

Sincerely.

Mary Helen

Living with Tremors today

Today, sadly to say my tremors are really bad.  I have almost no control of my left had.  My right hand is trembling,  but my left hand jerks back and forth upon trying to do anything.  I've made so many messes today, I resorted to medication and not do anything.  Not even cook today.  Because,   it is days like this that any tool, whether it be a fork, or simple cup can be a dangerous tool to hold.

Note to self...
CALL MY NEUROSURGEON.  Must get that Neurologist's number who is a "movement specialist".

On the other hand I am grateful, that I can use my hands when I can.  Before, I couldn't.  I thank God.

Mary Helen

Born With Essential Tremors

Well where do I begin.  First of all this is a touchy subject for me as essential tremors is something I would rather hide, or better yet wish it would go away.  But, that's not happening, totally.  But, today I can use my hands and live pain free due to a brain implant to help control the "seizure like" activity my body went through several times a day the last year before my surgery.  And posting this for the world to see is somewhat scary.  Some folks can be really cruel.  But I have the need to share my experience, What it was like, what happened, and what it is like now.  So I will begin.  It's after midnight so I will keep this brief.

I am a 63 year young woman born with essential tremors.  I was about 5 years old is when I noticed I was shaking.  My mom would always yell at me to tell me to stop shaking.  By the time I was in 7th grade, I entered Jr. High (Middle School).  I would hide in the bathroom during nutrition and lunch to avoid anyone see me shake.  I avoided school so much my mom took me out to work at to work full time as soon as I turned 15.  Back in my day, that was legal.  Dinner dates were a nightmare, as I would order food and then leave it there because sometimes my hand would start jerking when I least expected it.  Tremors are one thing...Jerks are another.  So I would pretend I suddenly lost my appetite.

I lived all of my life with tremors and jerks, and a lot of medication.  I forgot to mention that essential tremors progress with age.  I worked for 30 years able to do what everyone else did, but with more difficulty.  However, because I had to work just like a normal person I struggled to do the best I could.  And I exceeded well in that area.  Thinking back,  I think I thought tremors were normal, because my mom really had bad tremors till she passed.  My younger brother Johnny also had tremors but not at severe as mine, till he passed.  Essential tremors can be hereditary, and obviously with my family, that is the case.  Sad to say, my 42 year old daughter, and 23 year old son also tremor.  My son tremors more than my daughter, and it bothers him so.  I know because I can see it.  I know somewhat how he feels, right?

As I got older, I started getting very sick with respiratory problems and lost my energy to maintain my body steady and function at the same time...It was hitting me hard.  One more thing I forgot to mention, is that there are many types of tremors.  

• Some folks tremor with a head bob.  Either the yes yes syndrome, head bobbing back and forth, or the no no syndrome, head bobbing side to side.   I had the yes yes syndrome.
• Some folks tremor only with their limbs.  Hands or legs.  I had both, or should I say all 4 limbs:)
• Some folks tremor with their torso.  That was literally nauseating.  Check...I had that too.
• Some folks tremor with positional tremors.  They might stop for a second, but will start right back up upon movement.  Would you believe, I had that too.  Ha!

As years went by my tremors worsened.  It made doing the simplest things difficult, like brushing your teeth.  Have your banged your mouth with your toothbrush like it was a drum.  That would happen daily.  It really hurts.  Try holding a cup 1/2 full with any liquid.  Not very good at that either.  If it didn't hit the floor, it landed on my face, or clothes, with some of it in my mouth.  Eating was extremely dangerous as I would stab myself with a fork, if I could make the fork to my mouth.  That happened always.  I've had a few stitches in my hand from simply opening a bag of spinach with a small paring knife.  I have no feeling in one of my fingers.  Oh well.  All these things are easy for you to do, but I must say made my life very stressful.  I made mess after mess.  I couldn't keep up with myself.  Best just to stay in bed, and get sicker.  I did that very well.

Anyway, by the time I was 61 I was almost in constant "seizure like" mode.  My body had become so rigid, from the tip of my head to the tip of my toes. Every muscle in my body would contract from being so tight.  It was painful.   I thought I was going to be that way for the rest of my life.  

While I was waiting for my new apartment to become available.  I again got a bout with Pneumonia and after another hospitalization, succumbed to recover in a rehabilitation nursing home for a few months.  A few years back I heard about a brain surgery patient who had a successful outcome with a new procedure.  I thought, "whoopee for her".  I didn't have a chance, because mine was not that severe...so I thought.  One of my new Neurologists, Dr. Ravinder Singh in Beverly Hills, referred me to a Neurosurgeon doctor also in Beverly Hills. Dr. Adam Mamelak.   I made my appointment and had no idea what I was in for.  

Before I got too sick to work, I worked for doctors setting up their billing systems, administrator, etc.  Being sick a lot I also had to deal with doctors.  So I am very picky and choose my doctors carefully.  If I feel they are not properly servicing me.  I will never go back and find another doctor.  However, the minute I met doctor Adam Mamelak, I knew he was the one who was going to work on me.  I just knew it.

When Dr. Mamelak saw my condition, he immediately told  me he had never seen anyone with severe essential tremors like myself.  And he has done many brain surgeries before too.  Bingo, I qualify for the surgery!  I will go into that another day as I will remind myself I have a busy schedule tomorrow.

I had the brain surgeries in July and August of 2010  Both of them.  Ugh, right hemisphere, and left hemisphere.  It was a nightmare of an experience as I had to be totally awake, and no tranquilizers either.  But bottom line, if I had to do it again.  I would do it in a heart beat.  It has changed my life completely.  Thank God. 

One more thing, I was diabetic, had high blood pressure, high cholesterol...and respiratory problems.  Today, I am also free of all of the above except some minor jerks and tremors.  I am able to use my hands.  See I can now type.  Lol.  Yes, I can cook, and craft.  I take advantage of all the hours of each day to take the opportunity to use this God Given gift.  Hands that can work like normal hands.  Legs that can also now work like normal legs, as they too would give out on me.  

Today, I can now use my hands, and am now able to finally focus on me, my life, and what I can do to be of service.  Being almost free of tremors, has allowed me to pick myself out of a wheelchair, to the point I am running after buses.  Lol.  I can cook now again, I preparing my food as if it were medicine.   My energy has increased and have lost about 60+ lbs. since then, and I'm better than ever.  Today I care,  Then I didn't because I didn't see a light at the end of the tunnel.  I had almost given up on life.  Thank God, Today my life is filled with life.

I feel so blessed to have all that I have.  To have the use of my body back, makes me feel like a whole person, who no longer wants to give up again.  Ever!  Have you ever seen anyone with Parkinsons who shakes a lot?  That was me.  So if that is you, or you know someone who tremors,  there is hope.  Really there is.  So with that, I bid you goodnight and God Bless.   If you have any questions, please ask away.  If you would like to see what I have been doing for the past year come visit my home page and see all my cooking recipes, arts and crafts, and just my plain writing. You can tell I stay busy.  Today, I am a grateful happy camper.

Till then, Many Blessings,

Sincerely,

Mary Helen.

P. S.  Maybe one day if I am brave enough, I will video me with my "brain" pacemaker off, then on.