Saturday, January 2, 2016

      I hope everyone had a great New Year.  I know I was very absent in 2015 and at some point this year I will go into the reasons why.  With lots of obstacles in 2015 both physical and emotional there will be a lot to discuss and I am at the point where I feel I can bring them to light.  I think one of my bigger obstacles has been with trust issues and although I have become accepting with the different venues of these trust issues, not all of them have been settled.  I'm to the point where I can discuss them without feeling I am offending anyone and being true to myself without stepping on any martyred toes.  

This being said....

Wishing you and your family a year filled with HEALTH, LOVE, PATIENCE & HOPE.


Tuesday, June 25, 2013

Still Hoping

Just had to share this beautiful poem by Nicole Lemelle.  She is a wonderful writer but I truly believe she out did herself with this poem.

I sleep 10 hours but still wake up tired.
I take my medicine but still I am sick.
I say my prayers but still they are not answered.
I cry every night but still feel the pain.
I donate money but still no cure.
I plan ahead but still afraid of my future.
I listened to you speak but still don’t understand.
I take notes but still can’t remember.
I hide symptoms but still people notice them.
I changed my diet but still progressed.
I go to the park but still can’t run.
I drank very little but still need a restroom.
I hold on tight but still drop things.
I talk slow but still slur words.
I always smile but still envy you.
I have MS but still … I have hope for a cure.

Please feel free to visit her website at  Still Hoping

Monday, January 14, 2013

When a meeting goes GREAT rejoice!

Well thank the Lord!  Tuesdays meeting with the Attorney's came out better than expected.  They are very interested in becoming involved to a point where we could keep the Center physically opened.  I of course was late about ten minutes seems to be the story of my life always late!  I truly believe it is part of the MS.  I don't want to sound as if I am creating excuses but it does seems to create a norm.  I truly do not know the essence of time sometimes.  I may say ok I have three hours before such and such appointment and with all due respect that should be more than enough time to get ready and put a file in a bag, get my meds or paperwork depending what it is I am doing and get there on time.

This is what my final checklist looks like before I go out the door:

1. Sweater just in case I get cold which is very awkward because I live in South Florida.

Yep!  I am such a sweater gal, I could do sweaters ALL year
 living in South Florida makes it a tad bit hard to pull off!  

2. Do I have a back up short sleeve top?  Just in case where I go it is unbearably HOT.  (This could be a HUGE event changer if I start feeling HOT and sweating because THAT'S it I will be down and in bed for a couple of days.  Most people don't know that.

I will usually do a cap sleeve.
 I normally do not do a tank because I don't like my arms.

3. Do I have my little Spaniard fan in my purse?  ~ May seem silly but I have three one that I purchased when in Barcelona that is only used on very special occasions 24 yrs ago when I was pregnant with Lou and had become a new mommie.  Love those months in Barcelona and going to the plaza daily; excellent weather by the way.

I have three of these the black one is when I was in Barcelona & is about 23 yrs. old.  I also have a white one that was gifted to me about six years ago from Isla CaƱarias, Spain & a beige one that I cannot recollect who gifted it to me but I have had it about 14 yrs.

I have five beautiful silk traditional Oriental fans however these are a little inconvenient because I cannot close them and stick it in my purse.  I usually use these for more informal travel in a big bag for the beach, outdoor market, etc.  Now are you following my dilemma's?

4. My medication in my neat little pill box?  That would be: muscle relaxant, my epilepsy medication that I actually don't use it for epilepsy but for Trigeminal Nueralgia facial pain, my pain medication and my "emergency" alert medication during the day which I use Adderal 10mg not to mention that in the morning I use a 30 mg ER Adderal because my insurance does not cover the other options mostly used by MS'ers like Provigil, etc.

Not very pretty so I opt for.......

Funny because this one is exactly like the one I carry in my purse
 it is an original Limonges  but mine is square and roughly the early 1900's.

5. My new friend, that I accidently bumped into and that I highly recommend is made by Poise.  I came to use this product because before I was diagnosed with MS I always thought I was becoming
 pre-menopausal and would make an appointment with my gynecologist she would run labs and say "no your not maybe it was a hot day."   One year I went to see her five time because of the same symptom, it felt like what everyone described as a hot flash.  I would start to sweat and sometimes even feel faint.  I almost wanted to cut my hair off from this devastating uncomfort that then would leave me in severe fatigue.  As I learned more about MS it occurred to me "hey if this helps with menopause why don't I check and see if it works for these heat strokes I'm getting from MS?"  Viola my love for Poise body cooling towelette and body gel roll on.  It is the BEST!!!  I recommend it to woman and men alike; honestly you will not know how you got through life without these.  They are a little expensive but so worth the cost.

OK...yes it is for menopause BUT it is EXCELLENT for those HEAT intensed  MS moments.  The wipes are so refreshing to put behind the neck and just wipe on arms and face.  Good~bye make up.  :-(

6. Keys?

7. Purse...did I get everything I needed?  Which purse am I taking and do I have to change contents between purses?

I cannot even begin to tell you how many purses I have collected through the years BUT it must be over one hundred and for a LONG TIME I would not change purses until about a year ago I said "what the heck, if I don't use it now the next Mrs. Garcia will use new tagged purses or my future daughter in laws will probably just toss them out!"  So I decided to make life more complicated and use coordinating purses when out and about. 

All of this, could cause anyone to be late, let alone me.  I am sure I am forgetting one of my steps which would lead me to drive back home prior to leaving the vicinity.  Well as I said before in the previous blog about my New Years resolution and taking strain out of my life; I was going to commit myself to me.  Well after this meeting I was already running with getting the Center up and going again and I would have some financial backing so why not?  I could do this my biggest strain is the finance and now it would be possible to continue having the Center opened without having to worry so much.  My head is spinning thinking would be still be hard?  Heck yea but I am sure I can do this.  I have been planning this for years.  So if I am not stressed about finance I could do this because my MS shouldn't flair.  Four hours later I am at home tired moreso than usual.  I slept Tuesday afternoon, all of Wednesday and did not get up until Thursday and that is because the Hubbie woke me up and made me get out of bed or else guess where I would be?

By  this time if my husband is going out with me he is just about  t'ed off!

Which leaves me to our follow up meeting for Friday, January 18th with these gentleman that are so nice and think that I have GREAT ideas BUT the person that was speaking to them was the pre Liset MS NOT the Liset with Secondary Progressive Multiple Sclerosis that still has a ton of things to work out before trying to save the world of MS or her Community.  Does some of this seem confusing?  Perhaps, my mind and body for some reason still seem very fatigued.
Till later my friends.

This was original written on Friday due to technical difficulties could not upload until today.  In essence I completely wiped out original template because it was not saved.  New project on my list!  As if it were not long enough already. 

Wednesday, January 9, 2013

Have you heard it's 2013

Well its 2:24 a.m. and I have been sitting here for at least over thirteen hours.  The last two hours going through other people blogs and reading very high spirited people writing about their lives; heck one woman I went back about two years.  I was sitting here thinking could someones life be so picturesque?  So perfect?  For me I have been more than half a day trying to first get out of bed today it was terrible after about six days with the normal MS symptoms that I think I have been able to somewhat become a costumed too.  Today my MS (which I have to name, I love Dear Faye's name for MS; "DRAGON") I wont come up with something so "custom" ~ nope MS brain fart I meant ... still thinking...those MS'ers out there know exactly what I am talking about...ok I meant to say "I won't come up with something so visual?  No that's not the word I wanted but t will come to me."  Anyhow I had made a mental list on how I wanted 2012 to go and start and today's episode of not being able to get out of bed till about twelvish kind of put things in perspective.  I have MS and there are days I will not be able to get out of bed.  My pain has been higher than usual but I have been able to pop medication and get going, this morning was no hope.  I did manage to pull myself out of bed and try to pt my thoughts together but that was easier said than done.  I came to the conclusion that perhaps it is a sort of panic attack because tomorrow I have a meeting with three Attorney's at the Community Center because they want me to work with them on some modifications.  I am down to just one more to settle and although the financial gain is very enticing I don't think that I could have that chaos in my life any more.  I spent most of 2012 battling the MS, battling keeping open the Community Center, battling to get Modifications aproved, battling my sons, battling my family and with all do respect I am tired of battling.  I want to be like one of those bloggers I see and read about, high spirits, walks in the woods, a cup of tea, work on my crafts, work on my jewelry and take things one day at a time.  What stops me?  Oh I swivel on my chair and look at the mess in what was my home office now becoming a scrap room/studio but in total chaos and my mind draws a blink again; "what stops me?"  

Needing to reconcile with the old me that I am not an irresponsible bum for not having structure.  I am my worst judge.  SO I believe that is what is going to be on my priority list this year: putting Liset first over anything else.  That is much easier said than done but it will be first on my list along with putting me first means my health issues.  I need to quit smoking.  By the end of this week I will contact the Florida Quit Smoking program.  I know that will be hard but with my past history of uterine and bladder cancer I truly do not need more health chaos in my life.  I am also going to follow up with all of the specialist that last year I neglected to see.  God this list could be never ending.  I will stop doing anymore work with Modifications and or taxes; nothing that brings me stress will be done any longer.  I will close out all business from last year   and try to open myself to a new less stressed life.  I have come to the conclusion that although I said this before I will no longer struggle to keep the center opened.  I will start next week to pick things up and close shop we will however keep things going online because I need I still feel it is my duty to somehow try to help people and myself.  This disease is a struggle for all of us and the road perhaps could be easier if we walk it together.  

That is all I have for today my friends and I will be writing more often because I am not going to judge what I write and it doesn't have to be perfect, it just has to be me.  Whatever 2013 has in store for me I am ready.

Monday, October 29, 2012

Seasons Change........

Seasons Change, people change, things change but thank the Almighty there are some things that you can count on that remain endless.  Time with its tick tick reminds us that there is always somewhere to be, perhaps an appointment to be made a call to receive a bill to pay for that tick tick runs into eventually the accumulation of minutes, hours and days.  Which brings us our Seasons; Winter, Spring Summer and Fall; birthdays to celebrate, gifts to buy, sales to rush to, holidays to bake for and excuses for the endless family gatherings. 

     “But what if it isn't so” you say?  “I don’t have a large family, no one comes to visit me, I hardly leave my bed and there is no need to see the Dr.’s but every few months unless something major happens because I’m NOT getting any better.  Home health comes to see me helps me with my hygiene etc.  The tick tick means NOTHING to me, SEASONS mean NOTHING to me nowhere to go nothing to do!”

    I started by saying : “The Seasons Change, people change, things change but thank the Almighty there are some things that you can count on that remain endless…….” 

      Well what if I also told you that both paragraphs are me on a good day and an MS bad day.  One of the beauties of My MS is having depression and panic attacks associated with my Secondary Progressive Multiple Sclerosis that usually I have very much in control however as with many diseases that more stress you are under the more complications you endure.

That where these four spectacular women come in;

     Faye, Terry, Yolanda and Rae wow could I have picked four more powerful women??? I wonder what drew me to all four of you? One thing is for certain we all share some of the same qualities; I don't mean to toot my own horn BUT you ladies have done something incredible to me even from a far. Funny thing is you truly don't even realize it. I have always said that being humble is one of the GREATEST virtues a person can have and I still believe that to be true today BUT a few months ago I would never had put myself in the same circle as all four of you lovely ladies. Do not get me wrong, I know my qualities, in my own way I know how to appreciate myself although others would say I do not HOWEVER I would NEVER say it out loud. The meaning to this post was NOT about me but about how rough this month has been on all of us in different ways and yet we still find the strength to love and support those around us as much we can. Even those that we have no kinship to;

     Yolanda lost her brother and in the mist of all her grieving and the loss of her childhood partner in crime. Emotionally supporting her children as they grieve their Uncle and now with the tough decisions of an ailing mother she is still posting about her healthy new habits; eating organically, taking the right vitamins and how they have altered her life, all in view to see who she can help. She is constantly seeing what she can donate to help causes and proactively seeing what pet she can save. All in the mist of being proactive in her political party affiliation and extending a helping hand where she can.

     Rae, while trying to run her not for profit MS Station a full time job in itself has also picked up a paying job to make ends meat just to be able to continue serving the MS Community with her not for profit all because she has a vision. While she struggles after many years of not working to be at par with others she realizes that her MS has affected her more than the physical part of herself but also her reaction to her thoughts and her motor skills. She knew it was going to be hard but she didn't know it was going to be this hard. But she still finds the time to not give up not only on her dream and vision to help other MS'ers but to connect with her friends and send a shout out of "hey I know I have been busy and not been here for you but if you need me I'm here."

     Faye, could ever a lovelier name be chosen for such an exact personality? I feel so blessed for accidently meeting lovely specimen of Gods creatures. I say that with a smile on my face because how could you describe Faye? Someone that so eloquently picks the perfect picture and writes the perfect metaphor with content all while struggling with her own "dragons" and you would never know it unless you look deep enough. I see so much in me, in her and when we spoke on the phone the very first time I felt like if it was someone I had known for years. I don't know why. It is bit as if I read her Bio or her life's work but it IS the openness without guard of the posts of the Wizards, Dragons and Tysabri that brings us closer and she does all of this to help others...unselfishly; her name is not tied to anything, no name recognition. This is truly done out of the kindness of her heart without an iota of benefit but to help a friend and to help fellow MS'ers. This is why Faye is part of my Board because not once did she ever ask to be, she just asked to help and there is no way to repay that....ever. Faye struggles with her daily life as all MS'ers do and at the end of the day she asks "now what can I DO?" This month has been the emotional ups and downs of the Tysabri adjusting to this new medication and now the added responsibility of Restore Hope and like a trooper she takes the blows and keeps on going forward.

     Our published Author Terry and the Nominee for "A Lovely Blog Award". I cannot think who is more deserving than Terry. From the first moment I read "Multiple Sclerosis, an "Enigma" (pronounced Enn-igg-mah)
" I fell in love with her. With her writing, with her person, with her struggle, with her life. Then I was given the opportunity to know Terry the person and saw what honest writing was; in her books and it drew me to her blog and her other websites and even reading her articles in published print newspapers from her area all of her writing depicts who this person is a genuine friend, to her family, to her community, to her students and most of all to her friends both old and new. Terry is now going through an added struggle as if MS was not enough but she has been diagnosed with skin cancer in its malignant form. She has had to have several surgeries to control the disease and will have several more to undergo but she does NOT stop. She continues researching, writing, posting, informing the public about her health about our health. All in the mission to help someone.

Gut wrenching month.

Did I say month? 

Meant year.

As all of you know I have had a very difficult year but let’s stick to the month of August that we are only at the 17th of August. In this month I have had my home sold and I am waiting for a Judge to give us his final Order on the Emergency Hearing regarding Vacating the Sale. I will post links for those of you that might have missed it. I have had my husband of ten ears tell me "its over" and I had the phone lines of the Community Center shut off for four days before I was able to reconnect it. My best friend from Kindergarten is mad at me because I have neglected her and more than likely I have but in all honesty I have not been able to function for myself let alone be responsible for anyone else's emotional stability right now. I am hoping with time she sees this but I cannot make someone change their opinion of me that is for them to chose not I.

To say the least it has been a hard 17 days, an emotional, gut wrenching 17 days. I was further insulted by two fellow MS'ers at an MS event that I did NOT have SPMS but had RRMS the stigma of a "hidden" disease but by two people that never knew me before MS nor knew me when I had RRMS to be able to make the comparison. I believe this was more offensive to me than the other things that happened that in anyone else's book would had trumped everything else but for some reason this truly hurt me because an MS'er should know better!!

   Our common Bond

     At the end of the day it is the strength and determination I see in these four woman that gives me strength to carry on day by day. That when I feel I have lost faith in humanity and society for a collapsed system or peoples selfishness these woman ground me and show me that there is still kindness, love and faith in this world. When one of us; because we are all human get caught up in life's selfishness I believe the other woman's writings or posts and simple good nature helps us see that perhaps we are looking at things from a different angle. I cannot be sure but that is what these woman do for me. The common thread we share is our MS, yes we have it in different stages, in different forms but nonetheless MS which we all know hits each person differently.

I do declare.......

I will retrieve from my humble cocoon and declare myself at par with these four marvelous, gifted, strong, loving, vivacious, servers of their communities leading ladies and say thank you ladies although you may not know it from the different points of this country you are giving me an energy to not only get me through my personal turmoil and find strength within myself but find strength to serve my community in Restore Hope in Our Community Trust. Thank you for giving me guidance, friendship and your relentless prayer avalanches. 

The Procrastination or perhaps,

 I just can't do it any longer?

    This was originally written on August 17th 2011 since then so much has happened.I have isolated myself from life just waiting for that verdict of Judge Lester Langer  In The Circuit Court of the Eleventh Judicial Circuit In and for Miami Dade County, Florida and our home he sure would have to side for us and approve our Motion to Vacate the Sale along with other Remedies however as I was preparing dinner on Saturday September 16th 2012,  I decided I needed more lemon for the Salmon I was cooking for my husband to woe him back into our home, it had been four night since he had left honestly it was taking a toll on me; the MS, our relationship, the house, the finances, the clients whose house I had saved their homes that could afford to pay and decide not to participate in the “Community Clinics” because they want the entire job done for them, those have to pay based on their salaries.  Well last month we closed on six of those files and not one paid us.  Meanwhile the Center trained and paid employees to work on those files and we do not get paid until we close on the file.  Sometimes working for months until an positive outcome is reached with the homeowner and bank.  Also although we train people that are unemployed and give them jobs and are a non for profit organization from the beginning we chose NOT to pursue any government grants,  For two reasons this needed to be done by the Community and we were not going to add more to our governments deficit.   So in essence at this point we were working off of  negative numbers; no payments from cases closed, no volunteers, no donations. On top of all of this our home being lost while you are seeing other peoples homes that you are saving it calls for a bunch of irony.   All of this puts strains on people not to mention couples and then add to that MS.

The MS World

    MS in itself is a terrible, terrible disease.  You have ups and downs; sometimes, depression, sometimes panic attacks, other times you just want to isolate yourself because you do not want to be judged because there are spiteful people in this cruel world.  Anyhow back to my story, I had decided that this marvelous dinner with the best China on the table, candlesticks, goblets for the red wine, silverware and a group text no visitors from 6:45 p.m. to 8 p.m. was going to bring my husband back home so as I was walking to the car I to run to the store and get some extra fresh lime and rosemary and I remembered and I realized I hadn’t picked up the correspondence on Friday.  Let me just add I was feeling good MS was vacant in my life on this particular afternoon although the morning was terrible.  I was in relatively good spirits considering everything going on; I was wearing a very cute skirt and an equally adorable top.  As I was walking back to the car from the mailbox I saw the letter to from the Judge and thought I will open it later nothing is going to change my mood.  Then I felt the envelope and thought how bad could it be?  It’s thin, doesn’t weigh more than two ounces, maybe one page and I thought well this is probably going to say for us to go back to court he wants to ask more questions.  He told us he needed at least a week to go through everything. 


 Our Hearing

 Our Hearing was held on July 26th 2012 three months ago.  It was a week before the primary elections and the Judge told us immediately at the end of the hearing that he needed at least a week to get back to us.  I was a little surprised after working with the community I had always seen Judge's make their decision right on the spot. My immediate thought to this change of events was he was waiting until after elections.  No one wants a Community center Activist picketing prior to elections at the courthouse with all of their happy homeowners.  If this is what he thought he was gravely mistaken because at the end of the day I still somewhat believe in our Judicial System even though I am aware of the corruption that plagues it and I am not for picketing or anything of the sort.  I had cited several points in the Motion and for each point three cases.  It was the week prior to the election and I figured that his schedule was also tied up that it would not be until after election that we would receive the Order form the Judge. 

  Thin Envelope has to be good news!!!

    So, here is this very thin letter and I decide to open prior to going to the grocery store.  It is a one page letter and towards the end it says after careful review we I have determined your motion for the Vacate of Certificate of Title is DENIED.  No further explanation.  So the sun felt as if it was all of a sudden burning my sun hat and my knees felt as if it was going to buckle and hit the concrete.  I had to get a grip of myself and turn off my car and grab my purse and get back into my home, call my husband to tell him that dinner was off and that I had received the letter from the Judge with his verdict.  I didn't cry I just said “I received the mail and the Judge sent the letter and we lost the house” his response was “what does this mean? I will be right there.”  I immediately after about a minute shock texted him and said don’t come this really isn't your problem, you left…this is my problem, please don’t come.  I DO NOT WANT TO SEE YOU!!!!!”  I looked at myself at my stupid skirt and the disgusting top and said what the hell was I thinking???  A few minutes later he was home and I handed him the letter and he said “how could this be?  With far less you have had cases thrown out for the clients at the Center.”  I didn’t look at him and just responded “I don’t know” as I fell to the ground and for the first time in all the months sense this started I cried but not any cry I howled.

Materialistic? I don't think so.  Emotionally attached? Yes

     I want to add that my crying was not for the loss of my home to this day almost three months later we are still here and I will get into that later.  I am still fighting the Judge’s decision.  My crying was for the emotional roller coaster of the ups and downs.  I have learned many years ago not to become emotionally attached to material things.  I love my home; everything about it but more so I love the memories associated with my Thomasville dining room table that has been with me for over 25 years sharing 25 Thanksgiving dinners with my family and 25 Christmas Eve diners with us and Easter etc, I love my China that has been handed down to me from my mom, my photo albums, etc, little things like that.  My thought was where do I put all my things?  How much time will I have to pack and find another place?  How can this happen if I was paying my home?  How could the bank break the contract the made with me and the Judge side with them?  We have retained an Attorney and are back in court but it does not look good.

In Retrospect.... 

    How do I get through this surrounding myself with strong woman, positive women, perhaps we do not have the same political affiliations, perhaps we have different religious backgrounds.  It doesn't matter, in the end we are all positive, strong, loyal, good hearted, independent, respectful individuals.  What more can I ask for?
As I said before Seasons change, people change, things change but by have a great network of strong woman and not isolating yourself in a cocoon can make a difference on how you hear your tick tick.


   As I said before Seasons change, people change, things change, but by having a great network of strong women and not isolating yourself in a cocoon, it can make a difference on how you hear your tick tick.

I am not giving up on myself, my disease, my marriage, my home, my life.  That strength to push forward I get from these strong woman I chose to encompass my life with.  By their talks, suggestions, debating, reading their writings but always knowing that I have a group of non judgmental woman that I can go to for real advise and at times just to vent and say, "I had a terrible  terrible day!"

IF you would like to join out talks about MS please join us on our facebook group where we have over 1,500 members our follow the widget to the right also don't forget to "like" us on our facebook page at the end of the day we have the day in day out normal dilemma's of the average person however too that you add the chaos that MS brings to our lives.  Perhaps talking with others we can Reclaim our Lives and Restore Hope as One help us in Restoring Hope with MS.  

I would like to thank from the bottom of my heart Mrs. Terry Crawford Palardy reknown Author and wife of Rick Palardy where she has a joint venture and quaint shop with a hometown feel more information please follow links bellow:

I would also like to thank Mrs. Yolanda L.C. MacKemzie without her endless debates, passionate humanism, I would not be kept on my toes daily.  Her and I have completely different views politically but at the end of the day we are friends and respect one another.  I do not know another woman with more compassion than her, those that know her are blessed.

I would like to thank Miss Rae Edwards, her late night phone conversations when I have desperately needed it have been a welcome relief.  Our power talks about our non profits and our goals and insights on how we want to change everything I would not change that for a million dollars.  Please follow the links below on more information on Rae's non profit. I am happy to be part of the Board of MSstation and very excited of what the future may hold for it and the benefits to all MS'ers 

Finally Fae Manos Quinn, I have to thank Terry for our friendship.  I met her through my blog and we hit it off immediately.  It was like a lost sister that I finally met after many years of searching for her.  We have differences in so many things but at the end of the day she loves me just the same.  When she doesn't hear from me for days she will track me down on whatever phone number she has for me just to know I am ok.   As Restore Hope's Education Coordinating Director her writing and posts can be seen on our group page for Restore Hope In Our Community @ and she could be reached directly at 

Thank you for being part of my odyssey please feel free to leave a post.  To contact me directly email me at  

Monday, July 16, 2012

Waiting to Exhale........

Waiting to Exhale…….

Oh how I wish this blog would be completely dedicated about the thrill of new love of that giddy feeling we get when you meet someone new and you wished you had the ability of fast forwarding the clock to see if this was “the one”.  I watched “Waiting to Exhale” with Whitney Houston (Savannah), Angela Bassett (Bernadette), Loretta Devine (Gloria) and Lela Rochon (as Robin) and the leading men that when there were gentlemen none pops up more clearly than Gregory Hines (as Marvin) and Dennis Haysberth (Kenneth) and you always have to have an opposite of the bad boy and the movie has plenty.  Yes I did have the luxury of distraction for about an two hours at one point dozing off perhaps because of the deep, subdued, relaxing voice of the DJ narrators voice played by Forrest Whitaker.  I could blame it on dear Forrest that I may have dosed of at one point or another.  However he managed to take my mind off of the realities of what is going on with my life right now and at one point I thought if I don’t stop this what will happen.  Where will I be watching my TV set in another two weeks??

Courtesy of 20th Century Fox

Where to start?

Perhaps I should rewind??  But how far do I take you??  Unfortunately our lives are so complex or for the very least my life is so complex.  I believe one of my biggest problems with writing in this blog is what subjects do I stick to?  Do I make it completely about MS?  Do I add my brief fight with uterine and bladder cancer?  Do I talk about all the services we currently have at the Community Center?  Do I talk about my family?  At any rate after much going back and forth in my mind just causing more fatigue to this already “cog fog” that SPMS gifts us, I am going to talk about what is happening right now in my life because I think that when everything is said and done this outcome will have a lot to do with what happens from here on forward with the Community Center, my life, my marriage, my children and those that depend on me either family, friends or clients.

 How we got here.........  Well part of it

In blogs previously posted and those that have known me for years knows how the Community Center unraveled and how it just took a life of its own.  The exact dates as I write can only be approximates because to be exact I would have to go through corporate files, etc.  I hope you will all bear with me.  Before Restore Hope In Our Community Trust came along we existed as Rocky Times Services, LLC.  This name was a name I picked because actually I didn’t have a name for the business which was not started as a business because in fact to be a business you have to have money either in or out.  The name slipped off my tongue talking to a bank of a friend of a friend that begged me to help them modify their loan.  I had been successful in three other modifications and this was a referral of a friend of a cousin of mine that lived out of state.  The bank was telling me they could not speak to me because I did not have a “Third Party Authorization” and they asked me what was the name of the company I was calling from and Rocky Times Services rolled off my tongue.  I could not think of a more appropriate name for everything that was happening.  The economy had just crashed; people were losing their homes, unemployment in S. Florida was at 16% and I had already been to court with one of my husband’s friends when I took a step back and saw what was happening; nobody knew what to do; from the Judges, to the Plaintiff’s Attorney’s to the Homeowners.  The court rooms were over flowing with people.  Some crying not knowing what to say for they didn’t even know English, let alone how to read or understand the type of loan they had signed to adhere to.  I took two steps back and I looked into each and everyone’s faces and I started to cry and I said this is our downfall.  This is the total collapse of life as we know it.  Our whole Judicial Civil System is being brought to a halt because of this catastrophe.


My Body Reacting......

My right leg went into a muscle spasms I don’t know if it was because of the tension that I was feeling or because I had been standing too long or my body just saying don’t push it because you will end up in the hospital again.  I had already been diagnosed with Multiple Sclerosis in the Relapsing Remitting form and I was also undergoing treatment for my uterine and bladder cancer and was receiving Chemo therapy via catheter folly, this is called intravascular treatment at Sylvester’s Cancer Center at UM with very minimum side effects.  this was to help the Hunters Ulcers that were left behind, that could not be removed surgically during my operation.  I had a partial hysterectomy and was left with ¼ of my bladder and the folly until my treatments finished or the Dr. felt I no longer needed them.   I will one day get into this in depth because I learned about the Cancer by a total fluke for something else.
Dr. Ivan Antonevech the s best pain management Dr.
Dr. Usha Verma the best Gynecologist ever!!!
The hospital that treated me post surgery


I had already been also successful in not modifying my loan but revamping a whole new loan a few months prior.  This was before the height of the foreclosures around April 2008 and before the Making Home Affordable Programs (MHA or HAMP) and the huge Stimulus Bill.  When the MHA came into effect it gave me something to read.  I was spending a lot of time in bed because of the Chemo and occasionally perhaps the MS I am not really sure at this point but I will tell you that I had a lot if reading material. And most importantly it helped me not concentrate on the fact that I had been accepted to FIU for Law and could not finish my first semester because of my health issues.   The Directives and shortly thereafter all the Supplemental Directives helped me through my physical health problems and my emotional problems of knowing I was becoming further away from the fact of becoming my dream an Attorney.   I was doing all of this from a phone line courtesy of less than 60.00 a year via Magic Jack and the papers spread out on my bed at times I would fall asleep being on hold with the banks for over 1 hour and 20 minutes.  The downfall of using Magic Jack that it would not be uncommon that after waiting on the phone for over an hour and being deep into a conversation with a Representative that actually had a brain to be totally disconnected because MJ was not very dependable.  Worse dread scenario; calling Bank of America was a nightmare more often than most I ended up teaching one of their representative the guidelines to the MHA or HAMP programs.  Before I knew it I had finished my Chemo treatments and closing more modifications.   Not once accepting not even a box of chocolates for my work just the satisfaction of knowing that I was giving back perhaps as a payment to the blessings of how I learned of my cancer and how nicely it was going away not one strand of heait lost from my normal wear and tear….I’m a known shedder.  ;-)

I will post this now and continue a little later or by tomorrow I promise, fatigue is setting in.
Now is where it starts getting a little tricky..........

Tuesday, June 12, 2012

I vowed I would never see him again and yet, I let him in once again......

I am staring my biggest demon in the face. He comes in acting as if he's my friend promising me if I stay up; so much more, of       "to do" list will be accomplished.  He neglects to tell me once I agree to his wishes that my cognitive memory will be null and that the following day it will be even worse.  Oh why did I invite him in tonight instead of the Sandman? For I should have known better his history with me has always been the same he never changes; his thievery of time, his lack of sympathy, yet I fall for his false pretense every time in hopes that this night will be different from the rest.

Every night, I give to him my heart and soul. I actually started off tonight thinking I would trick him on this particular night but his experience and savvy far conquer any worldly knowledge I may have over him.  My grandmother use to say "mas save el Diablo por viejo, que por diablo."  In not so perfect translation "Moreso, the Devil is wiser because of his age, than because he is the devil."

I introduce Mr. Insomnia.....

He has taken full advantage of my weakest moments, when my MS has been at it's peak and have no strength to fight him off.  How long has Mr. Insomnia been along battleling the Sandman?  Perhaps before the hands of time.  I will go in search of finding a way to un-wit Mr. Insomnia at his game for the secret to this ever important quest has to lie somewhere.  Finding the key at unlocking his enchantment he has over me must be pursued.  If any have challenged him and won please share your experience, for the next time he taps at my window bearing gifts, charm and promises.  I want to be ever faithful to the Sandman and send him off.  I want to be strong in my conviction when I send him off!!! 

In all honesty if you have the Sandman on speed dial send him over to my place, hell send him a tweet, let him know I need a double dose of Pixie Dust!!  I really need one solid full nights sleep.  Thanks peeps, all suggestions in breaking this morbid affair will be accepted with open arms.  ;~)

         I wrote this post last night and tried posted from my tablet at 3:43 a.m.

This morning at 8:30 a.m. although tired I rolled out of bed.  Muscles aching, head throbbing but I got up.  In my quest to tricking him I will try not to nap during the day.  If I were normal and MS didn't control my body perhaps this would work trying to starve it from sleep in the ever hope of pure exhaustion tonight collapsing in bed and shunning out Mr. Insomnia and welcoming the Sandman with his Pixie Dust.  However MS has a way of tricking my body when it wants the fatigue is so great that I could fall asleep for over 24 hrs. and when it wants to I could literally stay up for a few days without any sleep.  This usually occurs when I am on Avonex for some reason after the whole flu-like symptoms dissipate I am able to stay away for two days straight sometimes even three for some reason the Interferon does this to me.  However, I have not taken the Avonex injection in over three weeks now.  I stay off it for a few weeks then go back on when my body tells me it can no longer continue the ruse of "I'm fighting this tooth and nail without the injections" it's just the side effects to my system are so great when on the injections and then when I'm off of them the MS does creep in.  Balance off, neuralgia at its peek, optic neuritis setting in.  I will conquer this battle, when I say conquer I do not mean that I will "cure" my MS.  I mean I will be productive, give it my best at Restore Hope Community Center which is my baby.

So this is today's plan:  I will do my yoga (hopefully it will give me the energy I need to get through the day).  I took my Adderall (to help wake me up and for concentration) and held my Bacloflen for after yoga with my Trileptal.

Then I will shower and get dressed because I have an appointment with a client at the Center.  Yes shower for those of us that have MS know this is no easy task.  The changing of clothes alone can be a burden.  My biggest dilemma will be getting dressed and meeting my appointment which means shower, dress and getting into the heat and making the drive into the Center (which is only ten minutes away) but oh I have to leave the sanctuary of the air conditioned home.  Yes these are daily trials.  Not to mention I have to be in optimal cognitive condition to meet the client which is old business.  Then I have to stay for however long and meet the gentleman that is dropping off the equipment to set up merchandise for Pixies Closet.  Once I am in the Center there are always phone calls to take or make.

Then come home and find the energy to finish the accounting and taxes for a client and work on other files.  It is allot.  I know.  But when all is said and done I am hoping the Sandman will appear at my window tonight and brush away Mr. Insomnia and then I will beat him at his own game.  If you have any suggestions with your struggles of your midnight visitor let me know.  Do you shun him away or do you welcome him in?