Sunday, June 1, 2014

Don't let anything stand in your way of health and happiness

Recently I went through an aneurysm near my liver, I ended up in intensive care for 11 days and had to have 28 blood transfusions.  Since then I have been told that my blood pressure will not stabilize and that I may need to have surgery in order to correct this issue.

However, the odds of surviving such a procedure with all of the other surgeries I have had over the past 12 years isn't promising.  After speaking with several people that are very close to me and praying deeply on this subject I believe it is in my best interest to follow through with the second opinion.  But, in the long run I must think of myself and what this surgery might mean.  See, I am determined that I can beat this without surgery.  I have started taking iron supplements which stimulates blood production and calcium to strengthen my bone marrow.  i know that in the long run if I continue with these supplements I may be able to boost my hemacrit to a level that is safe.

I have been been doing this for about a month and the blood results that my primary care doctor got from the lab are promising.  It seems that my blood level has increased almost by an entire point and which means that it is working.  Like I said earlier this is all about the quality of life that I am expecting to have once I am on the mend.  With open heart surgery there would have to be certain limitations placed on my body that I am not sure I am ready to agree too at this point.  Since the specialist haven't receive the lab results from my primary care doctor as of yet they can't possibly make an informed decision.  Luckily I was called by the doctors office yesterday afternoon, because my doctor is going to be out of the country the rest of the month.

I haven't even had a chance to share these test results with my best friend and partner yet because we talked right before Dr, Chris called me.  No matter what happens to me at this point I have to say that I am content in the knowledge that those who love me are behind me and support me in this decision.  I know it may be hard for some of you to understand, but I am not willing at this point to limit myself any further then I have with the past surgeries.  i am finally on the mend  both mentally and physically and for that I am greatful.

I remember my grandmother once telling me that we can dictate how we feel with our attitude and outlook.  I hold myself with confidence and knowledge and I know that I can beat this.  I know my better than any doctor and I know when things are changing within it.  I am sure that it is the same with any person that has a terminal illness.  We become intimately familiar with every nuance of our body and when change or illness occurs we are aware of it almost immediately.

I honestly don't know what the future holds in store for me. I don't know if things between me and my partner are going to ever get back to where they were.  But I do have hope and faith that no matter what happens at this point he will always and forever be a part of my life.  I have told him many times in the past that I have never felt the way I feel for him with anyone else.  Yes I have loved others but i have never wrapped myself and totally lost myself in another person like I did him.  Sometimes, I know he felt under appreciated but trust me when I tell you that I wouldn't be here today without him and his strength.  I don't think he knows how strong he really is, but it is his faith in me and quiet hope that has kept my spirits up throughout this past year of hospitalizations and doctors visits.

I hope that he reads this and knows how much I appreciate him.  He always took very good care of me and made sure that I was eating and doing the right things.  I wouldn't have been able to recover as fully as I have, if it wasn't for him.

What I have learned through all of this is that you cannot let anyone or anything interfere with you health and happiness.  Because no one but you and the person you are with knows exactly what goes on between the both of you.  There are two sides to a relationship, there is the public side that everyone on the outside sees and then there is the private side.  This is the side that only the two of you see and because of that no one can really know the importance of the other person in your life.  So take advice and criticsm of your relationship with a grain of salt, remember that they only see the one side.

Your happiness is the key to your health, as well as your mental attitude.  Please keep that in mind as you go forward in life.

As always my hopes and dreams are with you,

Uncle B

Wednesday, November 20, 2013

To live quietly and walk with confidence will take you further in life

When I talk about living quietly I mean letting your actions be your voice, lead by example.  I know we have talked about lies, truth, integrity.  But what about your actions, how are they interpreted by those who observe them?  Honestly the old adage actions speaks louder than words is so accurate it isn't funny.  Every day I strive to live by my word and let my actions show my affection and love.  Many people aren't used to that so they don't know how to take me.  Yet, it is the way I think is effective in demonstrating that you practice what you preach.

When you are confident about yourself there is an air around you that others notice and are drawn too.  Almost like there is an energy field around you and your quiet confidence and sureness lends authority to your manner.  You demonstrate through actions that you know what you are doing and that you are firm.  Living this way will impress everyone around you.  They are going to want to be like you and envy you.  But it isn't all about that.  What it is about is that those who see you know immediately that they can trust you, that you aren't going to let them down.  You have a certain gleam in your eyes, you are not over ambitious or one that is going to pull the wool over their eyes.  You are truly a man of integrity and someone that others can look up to and emulate.

Think about it, I am sure you have seen a very confident person, a person who has everything going for them. They are positive, outgoing and receptive to new ideas and things.  They are people persons, those who go out of their way to show that they care about themselves and others.  These are the people that are soon moved into leadership positions and can command the attention of a room just by walking into it. The don't demonstrate fear, they show understanding and compassion as well as learning.  Usually they are accomplished and intelligent and wear their confidence like a second skin.

If you can be more like them I am sure you can see how this will open doors for you.  If you are grouchy, crotchety or any other nasty euphemism I can think of do you think you will get very far in your career or with the goals in your life?  If you are sitting there waiting for things to happen for you, do they?  The answer to both of those is NO.  You have to grab life by the horns and take a step forward.  You have to know what you want and not let anything stop you in getting it.  This will build your confidence and if you soften this with letting your actions show how you are feeling you will find that  you have become and unstoppable force.

But if you sit there waiting for your ship to come in or for the right opportunity to come knocking at your door, you are going to wake up one day and find that life has passed  you by and you have missed all the opportunities that you we waiting for.  You have to go out there and live. You cannot sit idly by and hope and pray that things will come your way.  Remember that sometimes a door is closed so that we can open it and step through.  You might be surprised at what you find on the other side of it.

See I keep trying to tell people it isn't where you end up that matters it is the road that you took to get there that builds you up and makes you the person you are. Remember what I said last year about us being the sum of all our interactions, decisions, choice and the consequences of them.  Well, that is the road I am talking about here. See it is all of those things that have brought you to your stopping point that have tempered you and molded you and made you ready for where you are at.

So please go out there show others how much you care for them through  your actions.  Have that air of confidence around you always and see what doors it will open for you.

Take some time and think about it, I am sure you will come to find that I am right.  Just like when you are in and interview if you are successful in selling yourself to the employer you have got the job.  If you aren't successful guess what they move on and select another candidate.  It is all about your confidence level.

Trust me it works.

As always my hopes and dreams are with you,

Uncle B

Monday, November 18, 2013

On my mind

You walked out the door once again with no words on your lips.  You lied to my face and disappeared without a trace.  I have called and text but to no avail. Where did you go and why did you run?  I have helped and worked, cheered and supported.  Did what no one else was willing to do, yet how do you repay?  With disappearing without a trace.

I worked and did all that I can to get you free from your past and still you turn around and go back again.  You said to trust you and yet again you have let me down.  Actions speak louder than words you say, and here you go disappearing without a trace.

You say you love me and have asked me not to leave, but don't you see I am not the one who leaves.  I am the rock, the fixture that is always here when you disappear without a trace.

I have begged and pleaded for you to stay, but once again you just walk away.

You have broken my heart and my spirit and I don't want to live this way.

I love you still but I can be no more, you are the one that shut that door.

Can't you see that you have lost me, the one you said was the best thing you had

Why have you hurt me so bad?

Sometimes love is just not enough

So here I am calling your bluff.

I don't want to walk away

But with you I cannot stay

You made it this way!


Not being able to sleep a lot on my mind

Sorry I haven't written much this week. I am still overwhelmed by what has been happening in my life.  At least part of it has been sort of resolved, my bf is back home finally.  He was gone for a minute and it was a lot to deal with especially with what has been happening with my mother.  Apparently around September 6 my mother was admitted to the hospital. She was having severe pain in her back and down her legs.  As of the 7th she couldn't walk at all, something was pushing on her spinal cord and her legs wouldn't respond.

She is a strong woman but this has really gotten too her, she stayed in the hospital for a week and was transferred to a nursing home and has been there till Friday when they transported her to another hospital an hour away from where she lives.  They have found a tumor on her spine and an abnormal growth. Right now I am not sure what any of this means.  But she is telling me that she may never be able to have surgery or be strong enough with her many other problems to survive the chemotherapy and other treatments they are wanting to give her.

While my bf was gone I spent a lot of money trying to keep in contact with him that I am not sure I have funds to drop everything I am doing and go up there, however, I feel just plain awful about that.  I feel she needs me and I should be there, but there is so much on my plate right now. I am trying to start my own treatments and get the liver biopsy done, as well as handle other personal matters, that keep me running across the state and the country.

One of my best friends called me yesterday and wants me to come and help him move, this is right before I am supposed to go out of town with Kerry.  I have tried to talk to my dad about what is going on and how I am feeling overwhelmed and like I am drowning with everything that is happening.  He just told me that I can't save the whole world and I have to do what I have to do to survive and everyone else must fend for themselves.

For those of you that know me this is a hard pill for me to swallow, however, yesterday has been very strenuous for me, because once again I felt abandoned and left alone.  I have no one to lean on or confide in.  I don't understand why I have to be the strong one that everyone depends upon.  When will I have someone that I can lean on and depend on?  I thought that I had that but every time something comes up in my life that is hard or devastating I seem to be sitting in the room all alone.  What a feeling!!

So here I sit at 3:23 in the morning writing in my blog because I have no one to talk to about the things going on in my life.  It seems like I have nothing and no one and I have to stand alone and face all of it by myself.  Again what a feeling!  It shouldn't be this way, I am in a relationship, why isn't he here for me to talk to and cry on his shoulder?  Good question! And one that I don't have the answer too.

I have been sitting around all day with all sorts of thoughts going through my head, not knowing what is actually going on anywhere.  The only one filling me in on my mother is her best friend and she is trying to spare my feelings knowing that I cannot be up there with my mother at this time. I have tried to be a good son.

I am so sad and frustrated this morning, I don't know which way to turn!

Please pray for me.  There is so much other stuff that is going on in my life that I can't put it in here right now because I don't want to upset anyone else...

Thursday, November 7, 2013

Yet another Update!

Today was the last full day of testing, and I got another clean bill of health.  It looks like we are definitely on for the research project that the VA is doing.  I am going to be 1 of 200 individuals trying these new experimental drugs to treat my two remaining illnesses.  It seems that if the treatments are successful, there may be no trace of either disease left in my body when we are finished.

Today was the eye exam and apparently I too have 20/15 vision which is better than normal.  There seems to be no ocular or macular degeneration in my eyes at all and all she could find was that I needed reading glasses.  The final phase of this poking and prodding will be in the next week or so where once again I have to brave the I-4 corridor and head back to Orlando and have a liver biopsy done.  Once complete I should be totally enrolled in the research program and can begin the treatments and getting paid for doing the study.

I am looking forward to this, they tell me that there are less side effects with these 2 new drugs and that I should be finished with the treatment in as early as 26 weeks. Though I will be followed by the principal investigator and the team for up too 2 full years.  Now, if they had done this the first time I got sick with cancer, I might not have suffered from the radiation damage that the initial rounds of chemo and radiation did to my body.

Most of the problems I am having now in my 40's are a direct result of the treatments that were used in the 90's and the lack of follow up by the doctor's and surgeons.  Here we are 20 years down the road and oops we forgot to tell you that radiation might have damaged your liver, spleen, pancrease, stomach, small and large intestines.  I hope you can forgive us this little error.  The answer is NO I can't forgive that little error because it has had a great big, no huge input into my life, one that I personally would have chosen to live with out.

No one said having a colostomy was going to be a walk in the park.  Hell, if they could have warned me that having a colostomy could have been an option back then, I am sure I would have told them no thank you and continued suffering the way that I was.  However, I wasn't given the option, I went in for a routine exploratory surgery and woke up with part of my intestines sticking out the wall of my abdomen and it has been that way ever since.  Life hasn't been easy and I have just now started to come to grips with all that has happened to my body over the years, but I can honestly say that I am still alive and that I am pretty damn healthy finally after all of these operations, and treatments that I have come through over the years.

The worst part of all of it was when they told me that I would have to keep the ostomy for the rest of my life, that was something that I wasn't prepared to hear and I am still not sure that I am 100 percent comfortable with the idea that I will have to endure this till my dying days.  At least I finally found someone that doesn't seem to mind it all that much and it makes dealing with it that much easier.

Anyhow I thought you guys might be interested in what is going on in my life today.  I am getting rested to head out to Atlanta this evening I have to go up there for court. I am hoping that the answer is going to be positive in my direction.

As always my hopes and dreams are with you,

Uncle B


Tuesday, November 5, 2013

Positive Affirmations

I know that last summer we talked a great deal about positive thinking, positive energy, and positive living.  We also talked about words and how they have power, they can either build or destroy depending on their usage.  But, as I have found out over this year, these same words of power can have meaning all to themselves and can benefit you in your daily life.  I call these affirmations, these are sayings that you tell yourself over and over again.  You can post them on your mirror, or somewhere where you will see them often, and everytime you do say them aloud.  These are positive tips that will help you, they will also help you maintain and keep your positive mental attitude for the day.

Remember that the more positive you put out in the world the more positive you get back.  Just like everything else in life if you live what you say you are going to go far.  Trust me when I tell you this.  Many self-help teachers and authors will tell you that if you want to be successful you must live and breathe the part, the same is true with keeping a positive mental outlook.  If you want to be positive you must live and be positive, there is no other way.

I have read books that tell you if you want to be a vice president of a company you must dress and act the part.  This is important, the image that you create for yourself is in effect a construct of creative visualization.  If you can imagine yourself in the part, you can manifest it in your life.  The same thing is true by you using affirmations.  If you tell yourself every morning that you are perfect and love yourself, eventually you will.  I have told my friend who has major self-esteem problems that maybe he should get a tatoo around his collarbone that says LOVE THYSELF, but backwards so that each time he looks at himself in the mirror or takes a picture of himself he sees it.  The more you see it and repeat it, the more energy you put into it and before you know it you are manifesting it in your life.

As I have told you before, one way that I prepare myself for the day is I get up every morning and I count my blessings one by one, and then I give thanks that I am able to live another day.  My same friend that I mentioned above does something very similar except he says a prayer.  Basically he thanks God for granting him another day and he says it seven times.  I am not sure what the significance of 7 is to him, but I know that it brings him that much closer to God each and every time he says it.

Affirmations are simple little phrases or sayings that you can post on your walls at work, mirror, monitor or other places that your eyes look every day.  They can be little things like "Smile You are Loved" or "Love thyself" or "Be Happy" or even "Today is a brand new beginning with no mistakes".  Remember the more you say them, the more you begin to believe them and that gives them power.

No one should be able to make your feelings about yourself change. Others shouldn't be able to make you feel any certain way.  Have confidence and self assurance that you know what you are doing and trust me it will show in everything you do.  People respect and appreciate those that are confident and strong.  When you make a decision stick with it.  These are things that will help you grow and mature.

When someone else changes your mood or makes you feel inferior or self conscious you have given them way too much power over you and I beg you to take it back from them.  Because they aren't doing you any good and adding much more stress to your day and your life.  March to your own drum and keep your own goals and desires in the forefront of your mind.  It is the only way to actually live.

As always my hopes and dreams are with you,

Uncle B

Monday, November 4, 2013

The weather is Dreary but disposition is Cheery!

I woke up this morning with the usual suspects..aches, pains and that persistent cough.  But the other thing I woke up to was the phone ringing and a pleasant and happy sounding voice on the other end of the line.  Often it is the opposite when the phone rings in this house.  You have know idea who is going to be at the other end of the phone, and in my case it is usually bill collectors calling about this hospital bill or lab test that I haven't been able to pay for.  See no matter what I do it seems impossible for me to cover all the expenses that this illness has brought to me.  I do have medicare, and I now have insurance from the company I work for but it still doesn't cover everything.

Even with the President's attempts to help people like me with the new healthcare legislation the slope is still very slippery, and now the choices that we have aren't all that clear to us.  Plus, none seem to cover everything and I am still stuck in a situation where I have to pay large sums of money to receive the care that I need just to survive.  Not to mention the cost of the prescription drugs that I have to take for my HIV, which are not covered in the formulary for medicare's 100 percent coverage.  I still have to pay over a $1000.00 per perscription per month for my drugs, though my antibiotics and most other medicines are covered at 100%.

Now, for those of you not in Florida this morning's weather is quite cloudy with heavy wind gusts and it is cooler than I am used too.  It has been like this since Friday and I am hoping that the cloud cover will dissapate soon.  However, as I said in the title it maybe dreary or gloomy outside but my inside is full of happiness and cheer. Despite the fact that I have been sick with bronchitis I woke up this morning with a song in my heart and a hope for a great and blessing filled week.  Like I wrote last night I have been going through the motions of living for the past year.  I mean I have been going to treatments, working, hanging out with my partner and basically doing the day to day minimum to life, but I haven't been out there in the fore front of activity.  I haven't been to a Positive Champions Speakers Bureau meeting in a year, or PCHAP or any of the other organizations that I was a member and active participant of.  You may ask me why is that, and I would have to tell you because I haven't felt good, that I haven't had the time or energy and honestly my health hasn't been up too it.  Every one of those things is the truth and even individually on their own would keep a normal person from participating.  But as you know I am far from normal and I am usually pretty active.  However, I just couldn't get into the groove of things this past year and I let so much slide.

Yet, for whatever reason this morning has been different and I feel a renewed energy and a sense of purpose that I haven't felt in quite awhile and despite my cold and bronchitis I feel that I need to be up and doing something.  I have made coffee already and several phone calls and the day has barely begun. I think that my long road of holding has finally come to an end.

This has happened to me one other time in my life when I went from being in an extensive pattern of holding to bursting forth from it with a renewed vigor and I can tell you it was the Summer of 2008 after my last ileostomy.  It was June, I remember precisely because it was before Atlanta changed the dates on their Gay Pride celebrations.  I had gone through 2 years of intense holding because of repeated surgeries on my colon and abdomin.  Finally I woke up one June morning and decided to put on shorts and go out into the world and see if anyone noticed that I was wearing a colostomy bag.  Guess what they didn't and my sense of self and self esteem were tremendously bolstered by that fact. Then I learned techniques that have kept it hidden from everyone until I have been ready to reveal it and that too helped my confidence level. See it took me taking that step out there and going on blind faith to get out of that pattern and break the mold that was holding me in fear and self-loathing and let me tell you that having bags to use the rest room is quite a morale deterrent and something that I had to live through and get over.  Going out into public and having people seem me as totally normal and not noticing that the bags were there was a big boost to my ego, self confidence and so forth.  That day changed the way I viewed myself and the way I let other perceive me as well.  Today I woke up with that same renewed feeling of self confidence and hope for a brighter tomorrow.

Remember it is not the outside package that means anything at all it is what you have on the inside that matters.  Hold yourself with self confidence and poise and you will attract others like yourself too you and things will start to look up.

As always my hopes and dreams are with you,

Uncle B