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Tuesday, December 30, 2014

With hope all things are possible, with faith everything is manageable, and with love everything will prosper.

Thursday, December 4, 2014

When you feel passion, embrace it.
When you feel madness embrace it.

Then you know the difference.

Friday, October 31, 2014

Taking A Break

I've had a rough week. I'm not even going to try to "sugar coat it" for you, it sucked. I have been trying to express my feelings in writing but every time I write it down it either sounds like a pity party or  like I have just regurgitated a fucking Hallmark card. The simple truth is I got another diagnosis, this time a ovarian cyst. Not a big deal I know but just another item on the ever growing list that has become my life. I'm being strong and all that positive shit, but let me tell you something it is fucking hard.

People always tell me that I'm strong and they could never do what I do. That kinda puts me on some kind of a pedestal that I feel I have to stay on so I don't let everyone down, and honestly I'm just fucking tired. I'm just ready for a break, just a reprive from my life for a moment. I don't have a endless supply of possitivity, I have to refill it with my own soul and spirit. I pray meditate and tend my soul to keep it full but even that is not enough at times.

Don't let your condition define you, well when you have CON DI TIONSSS its hard not too. Clearly I have some work to do. My entire job is taking care of myself, and sometimes I fall short. My life defines me and my issues define me just as your career as a artist,  teacher or countless other jobs would define you. My life is my career, my livelihood and my reality, and I make mistakes. There is no school for my career, no guide book no steps to follow and no degree. Its just perseverance and survival. So the question everyday that I ask myself  is "do you want to keep fighting for your life?" AND EVERYDAY I ANSWER YES. I will keep answering yes everyday till I don't want to fight any longer. Make no mistake I value every single moment and every second I have and I'm thankful for them all. But its hard and standing on that pedestal of strength, well sometimes I need to sit down, I'm not giving up I just taking a break  I'm not sitting on the ledge thinking everyday wheather or not  I should jump on the contrary  I'm sitting on ledge watching the sunrise and just taking a fucking break

Thursday, October 16, 2014

Driven by knowledge

nurtured by hope

fed by optimism

In Time

In times of sadness I find joy
In times of pain I find healing
In times of grief I find peace
In times of love I find passion
In times of fear I find strength
In times of war I find compassion
In times of hunger I find sustenance
...and in time I will find purpose, in time I'll find meaning, in time I'll find you

Monday, October 13, 2014

Ebola and Transplant

The outbreak of Ebola Virus Disease or (EVD) has raised many concerns in the medical community regarding transplant and the risk of contamination during transplantation. The thought of potential donor coming in contact with the transplant recipient is frightening. The Centers for Disease Control (CDC) recommendations have been issued to the Organ Procurement Network (OPN) and to the transplant centers as well as The United Network of Organ Sharing or (UNOS), and although the risk of contamination by an undiagnosed individual is low it has not been studied.  As a result the CDC has recommended that EVD screening be included in evaluation of potential donors. The OPO's should also consider travel as a factor in evaluation, partly due to the the 21 incubation period of EVD.  If you would like more inforrmation on this topic you can visit unos.org or cdc.gov

Sunday, October 12, 2014

Several diseases and conditions can lead to organ failure such as heart disease, Cirrhosis, COPD, Cystic Fibrosis, Diabetes, Heapatitis,  Lupus, and Hypertension to name just a few.  If you are living with these conditions and transplant has become an option maintaining your health with these types of conditions can be difficult.  Keeping yourself healthy as possible is must for transplant. Transplant facilities want you to be at your absolute best to ensure a successful outcome of your transplant. The healthier you are the better you will heal and the likelihood of rejection is lessened. 


Thursday, October 9, 2014

Keyhole Kidney Surgery

http://m.bbc.com/news/health-29556902
After my rant yesterday about the insurance issue, I had a thought that somehow people will do what is right. The fact is some people are just driven by  greed and doing "the right thing" just isn't part of their thinking. The lines of right and wrong are constantly blurred by corporations, banks, conglomerates, and government. The question of how to change the broken system is inherently flawed because the belief that doing the right thing isn't as profitable. Many people are well intentioned, myself included and at the end of the day I have what I need. But so many don't and that is not fair. People say that you should work for what you want and quit complaining, and life isn't fair... there again that too is also flawed. Some of us  are not highly educated which leaves us poorer than most. If we somehow manage to squeak by, and get an education and a job with insurance we are almost guaranteed to be in debt for most of  our thirties paying off student debt. If we do get insurance we are still living week to week and one major hospitalization away from financial and economic ruin. And we did the right thing.

So what do we do? We change the way business is done!! People first, and yes it is that simple. We punish those who are without or in need, we treat them  as a lesser people that are not worthy of existence. Why is it so hard to help those in need and do what is right?  We change it... it can be done!

Germany just recently announced that all universities will offer free tuition, Sweden gives maternity leave for a year and  free day care, Australia has a minimum wage of $16.00 per hour and avoided the recession that we sank into, Frances gives it's workers three weeks vacation per year and 30 hour work week, Other countries offer free insurance and invest more in education. Did the countries come unraveled from investing in their own people? No they didn't actually the opposite occurred and they thrived. Not all the the countries have it right but the line in the sand has been drawn and it  clear that we need to do better. We are keeping the division of the "have and have nots" flowing long enough. Doing right for one, does right for all. We will all benefit from doing what is right for humanity instead of doing what is  right for  profit margins. 

I vow to do better and to encourage others to follow, one act of kindness will destroy one act of greed.





























































































































































































Wednesday, October 8, 2014

Insurance

Insurance the word that sends me into a complete tizzy. I can not for the life of me understand how they come up with the rules and regulations they follow. The thought process of these entities defies every ounce of common sense. I have dealt with (and somehow managed to survive) through illness despite having to deal with Medicare Medicaid and private insurance, because lets face it they don't make it easy. The reason I say "survive" is because of their complete disregard of logic, for example: When I became diabetic I could only have one vial of insulin a month, even though I was a Type 1 Diabetic and that required two diffident types of insulin to maintain, and only 25 test strips. This sets you up to fail which means hospitalizations which cost money. Then  the coverage provider proceeds to complain that health cost are on the rise and cut us back even more on our benefits. Bankrupt Medicare and blame the patients. I'm sick and tired of the continued bullshit. Apparently each of us need to acquire our own personal lobbyist to go up on capitol hill and stand up for us or better yet we all go together and make the politicians answer for the fucking mess they have created.

All the scientific data reports and the like all say it is better to prevent disease than to treat it, yet at every turn we are held hostage by ignorance. Its not hard, if your doctor who is accredited by the state and federal government  that feels  I need a fucking prescription then that should be good enough for the insurance company to approve me for said drug . I can recall several of these episodes the list is infinite, and I'm sure it will continue to grow as long as our interest as patients is not addressed.

Example number one: Dad's scooter

Carrier: Medicare

Condition:  Two time lung cancer survivor, COPD, lung dissection, type 2 diabetic on continuous oxygen, Arthritis in his feet which keep him from walking with out aid.

Problem: Medicare finally approved a motorized scooter for my father, had scooter for 2 years. Batteries started not keeping a charge and tires needed replacement. Dad calls scooter company for maitainace and the company has closed. Dad calls Medicare and ask them who he may contact regarding his scooter to get repairs. Medicare does not have record of the scooter and dad has no paper work because the company failed to give him any are no out of business. 

Result: Medicare has refused to repair because of no record on file, however they will not let him get a new one because they know he already has one. Medicare has refused to honor a new prescription for a new scooter because he can't replace his scooter for five years. In the meantime while this is being sorted out my dad has no way to shop or get his medicine, because this is his only means of transportation.


Status: As of today this is still pending and my dad does not have a operational scooter.

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Example number two: My friend Mita


Carrier: Medicaid

Condition: Diabetic, Double transplant recipient, Neuropathy, disabled

Problem: Accidentally broke her vial of insulin, Tried repeated attempts to get another prescription filled and has been denied by Medicaid each time because it exceeds her allowable amount for the month. Her doctor has provided her with samples of insulin she has to go pick up. Which is problematic because of her disability

Status:  Doctor has resorted to change her type of insulin in hopes of circumventing the system, and get her a prescription of insulin. She currently waiting on prescriptions.

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Example number 3: Me

Carrier: Private Insurance Medicare Supplement

Condition: Former Diabetic and double transplant recipient

Problem: Cut off within a week of acquiring insurance because Medicare did not report my transplant. Reinstated insurance the following week. Tried to make me pay a penalty for getting insurance at time I was not eligible, which was not true. Threatened a second time to cut me off because of they stated I had no drug coverage for more than 63 days. Billed me a late fee for not paying in September even though  I could not pay till the policy was processed ( I acquired insurance on 9/1/2014. )

Solution: Countless phone calls between the agents and the carrier and a trip to the doctor to get a statement signed to reinstate my insurance.

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These are just a few examples of the complete chaos and stupidity that spews from these agencies that are supposed to care for us. Clearly Obama care has fell flat on its collective ass, and I know there are issues and I certainly do not pretend to know how to fix it, I do know however that they can not remain as they are. Times they are a changin'.... And the sooner the better!! Clearly it boils down to money......Perhaps that's why I can't grasp the way these angencies think, because I value people more than money. My only hope is that we can somehow get these insurance angencies to see us as people not a meal ticket.




Tuesday, September 23, 2014

Living the Life

Every now and again I grab a cup of coffee early in the morning, and I sit and watch as the the darkness is slowly replaced by soft sunlight, and have this moment of peace. It's amazing, but if  I had never became ill I would have never have done anything like this before. I never had the time. Sad that it took a life changing experience for me to appreciate the sunrise. God has a way of making us see things  that we tend to overlook. Perhaps that's why  he made me go through these hardships, so I would stop and look at what beauty was right there all along. Whatever the reason may be,  I'm glad I got to witness it.

I realize now that I was so busy with my life, that I really didn't have time to live it. That's where I screwed up. I was missing my own life. I suppose now in hind sight I needed to find balance, and because I never did my life suffered. I put myself last, and by doing that I failed to live up to what life had to offer. What I learned is that when I stopped living and just went through the motions of my everyday drudgery, that my EVERYTHING was affected. My health, my marriage, my job, my faith, my judgement and most of all my sense of self.

I wasn't wounded I was numb. I think that's why I became ill, my body tried to tell me when it was time to slow down. There were signs, but I chose to ignore them. I had to prove that I was stronger than anyone else and diabetes didn't hold me back. So I would do what everyone else was doing and act as though nothing was wrong. It was normal for me to keep going and to be as strong as I could be. Then it all came to a screeching halt. My declining health and facing the possibility of dying changed everything.

My days no longer run toghther in an unending meaningless line of nothingness, they are now filled with joy happiness understanding and at times hardships. I feel them and experience them wholeheartedly and enjoy every minute as a gift. The gift of life, the gift of a second chance not to take my life for granted.

And after everything I went through, I sit....I sit  and watch the sunrise and I'm thankful and blessed to do so.


Saturday, September 20, 2014

Keep Moving Forward

Every now and again we hit a bump in the road. Its not the bump that we hit as much as how we handle the bump. I'm learning to enjoy the ride and not let issues that are beyond my control creep into my mind, and set up camp there. Although it is hard to do I'm getting better with practice, and it really does make me feel better about myself and the power I have to let go. The only thing you can control is your attitude, and it will make or break you. I constantly say to stay positive and keep moving forward (its harder to hit a moving target)  its been my mantra for a while now and at times my sanity.

 Moving forward is a concept of change, whether we like it or not things change. Now you can lay down and play dead like a possum or you can be a warrior for yourself and keep a positive and strong attitude and KEEP MOVING FORWARD.

Its clearly all up to you, how you want to deal with your situation. As a spiritual person I believe the best tool to use is your mind. Your mind can harness power we have yet to even understand, you will learn by letting go of the negative how resilient your mind and spirit will be. You can do so much more when you believe in the power of your own self. Everything I have ever been through I had a positive mind set and inner strength to push me farther than even I thought I could go.

That's what I'm all about positive mind, positive spirit, and trusting your instincts. You must do whatever it takes to persevere your spirit and motivation. It doesn't matter how you arrive in your positive space as long as you get there. You will never move forward and heal with negative thoughts. If you pray then pray, if you meditate then meditate whatever you need to do to arrive at your space of positivity and peaceful thought without this inner strength of self you will lose a battle that may well be saving your life. Connect with who you are, and make friends with you, and love you and who you have become, and who you will be. Move forward survive persevere and remain steadfast. You will keep your spirit alive, and in turn your spirit will reward you with inner peace, and inner love that projects outward to the world. Move forward and you will survive and so will your spirit.


Friday, September 5, 2014

Cooking Together

Bill and I are like peas and carrots.
Sometimes we are tossed in a bubbling stew, and others times we end up in a cozy warm pot pie surrounded by crust, and sometimes we  just enhance the dish!!

Wednesday, August 20, 2014

My Reflection

In the mirror I now see
lines around my eyes from sun & sea.

Around my face there are tendrils of gray
Some are old, some from just today.

There is a scar on my chin, from an old tree
A cut on my elbow, from when I was three.

A scar on stomach shows a journey I made.
How my life was saved one hot August day.

A callous on my hand from a job long ago.
More from the garden and digging with a hoe.

Tiny ankles hold up a large frame
Strong at one time now weakened and strained.

Long flat feet bear the weight of it all.
Spindly toes barley strong enough, to prevent a fall.

But inside the mirror does not see
 how big my soul, and heart have came to be

I now love reflection, the mirror has shown
I stand in front of it proud and alone.

I hope you find the mirror to be as kind
because you cant erase the passage of time.

Tab

Friday, July 25, 2014

Keep Moving Forward

Albert Einstein said life is like riding a bicycle, in order to keep your balance, you must keep moving forward.  How true that is , not only for the cyclists but for anyone trying to navigate their life. Keeping balance is key, finding balance however, may be easier said than done. I have struggled to find balance and to do that I had to do some soul searching . I had to find inner peace with myself and with my surroundings to create a peaceful and cohesive balance. Doing so, required looking inward at myself and letting go negativity pessimism, and judgements. When I opened myself to optimisim I became more balanced and peaceful, even happier. I moved  ahead with a renewed sense of hope and optimism that gave me balance. Keep moving forward and you can keep your balance!

Thursday, July 24, 2014

Believe

I believe in feeding your soul.
I believe in humanity.
I believe in watching the sunrise.
I believe in optimism.
I beleive in Karma.
I believe in God.
I believe that there is inherently good qualities in everyone.
I believe in fairness.
I believe in true love
I believe in positivity.
I believe in stopping to smell the roses.
I believe in friendship.
I believe in family.
I believe in my husband.
I believe in helping others.
I believe in taking long walks in the country.
I believe in holding hands with my honey.
I believe in saying I love you everyday.
I believe in mercy
I believe in beauty in everything.
I believe in healing your own body from within.
I believe in me
What do you believe in?

Wednesday, July 23, 2014

Well I'm back. I enjoyed my summer this year being with my friends has been awesome. No grass was growing under my feet, I got to do and see so many new things. It was a wonderful and enlightening experience. My only regret was that my wonderful husband couldn't go with me, he truly needs a vacation. He is having knee surgery on Friday and he will have to take his vacation to recuperate. I have big plans for next year though, he will be so surprised.

I did a great deal of soul searching while I was away, peace and happiness for myself and my loved ones (especially Bill ) is the most important thing in my life.

I really want to finish my book, I think it will be a great undertaking , and help me to keep moving forward. It  seems overwhelming to sit down and write my feelings and experiences, but I look back at what I have accomplished and I am astounded at how I even made it. They say truth is stranger than fiction and that is true, because I couldn't make this shit up!!

Tuesday, July 15, 2014

Thursday, July 3, 2014

Friends that are Family

I have returned to spend some time in St. Louis and enjoy time again with my wonderful friends. It's so nice to be here and see everyone again. They always treat me like family! That has been part of my healing process having such a close friends. So many of my close  friends live far apart, despite that we always feel close and they are always in my heart!

Friday, June 27, 2014

Hospitals, Bills, Money..Oh My

Well OK, I'm going to tackle something I actually hate talking about....bills and money primarily medical bills. This makes me cringe just thinking about it and I get so worked up about the insurance coverage the misinformation red tape and ineptness and constant barrage of under explained and overpriced bills, its just..... aaggggggghhhhhhhhh!!!!!

Yesterday I wrote about stress and how to handle it. This is where those tools for handling my stress really come into play. I have always said that when I left my job at the candy store that I felt the stress began to ease up and that I could no longer be a benefit to the company or myself. I enjoyed the chance to rest initially and accepted my new role as a patient (although a bit reluctantly). Then the bills started rolling in from the first hospitalization and I freaked out. The bills and were coming in a rate of about two or three a day, and coupled with phone calls about payment. Not to mention I was pretty much stalked in the hospital by the lady from the billing department who finally found me in radiology where she followed me back to my room to discuss my bill and handed me a "cost of care estimate" and asked if I wanted make a payment at that time. Really??? I don't even have on underwear and you want me give you money? where's my wallet well I guess she thought I had shoved up my butt or something ( which is where I wanted her to put her "cost of care estimate", if you know what I mean!) I felt so violated.

The bills were confusing and had to be reviewed constantly , they would overcharge you, double charge you, payments would cross in the mail, or they would never get thereat all, offices had crazy hours and more often than not you could never get anyone on the phone, much less get them to call you back. Sometimes I never even got a bill it just went straight into collection. 

All I kept thinking was how can I can rest now I have to get busy with the bills, then I was realizing  how is this going to work. I have no job, my husband can barely support us on his salary alone, we don't qualify for any kind of assistance, I can't even get food stamps to help out. What the hell are we going to do??? I was totally stressed out, as was my husband, and it was only getting worse. I think the phone calls were the worse, the collection departments were relentless and some were just plain ass mean. They would threaten, call you names, and some would just be rude. I got tired of being the financial victim and decided to be a bit more proactive. I talked to hospitals negotiated a lower bills, talked the collection companies got on payment plans and eventually found a The Help Save One of Own Foundation through a longtime family friend who cleaned the foundation chairman's home. Things started to get better slowly, the foundation  helped with the insurance deductibles and other things as well. I could now focus on getting better.

It was a full time job manageing everything, and it still is. I have now become a secretary with bad typing skills and  poor eyesight, a twenty year old desktop, a new laptop that I can't figure out to use, and an old printer that is somehow always out of ink, but we make it work and get it done.

Thursday, June 26, 2014

I'm not unlucky I'm lucky.  Because everything that I have experienced has taken me to this place of peace and happiness. I have become so thankful  with my life, my destiny, and my journey.  I know whatever challenges I face I do so with the strength I have gained, the knowledge I have learned, and the faith I posses. With my family, friends, and God  by my side there is no challenge I face alone, nor any I cannot handle. - Tabatha

Stressing Out

How do you handle stress? Do you hide from it? Bury you head in the sand? Or do you face your stress head on? The answer to these questions believe it or not affects your health. So many diseases and conditions are caused by stress and several more diseases and conditions are effected by stress. It is crucial that you learn to handle your stress as best you possibly can. It may be as simple as doing some meditation and yoga to keep you calm, or it may require a stronger approach such as therapy and/or  medication. Whatever the case may be you will have to find the right tool, for you to maintain a healthy level of stress in your life. Its like buying a pair of shoes, you have to find the right fit to propel yourself  forward comfortably.

I used to be able to handle stress by counting to ten, or having a crying jag. Crying to me was like pressure release valve, once I spewed I was OK. But as my stresses changed so did my techniques for handling stress. I did exercises and walking for a while, then my role at my job changed. It  increased my stress enormously, and yet again I tried to handle my stress and didn't do very well at all, and it began to take its toll on me physically and mentally. Unfortunately this time I was smoking and having cocktails on the weekends and none of which were really helping only exacerbating the problem with my diabetes. I took a step back, and from some persuasion from my employer I quit smoking, changed my position at work and started to slow down. By the time I figured out that the money and stress I was getting was no longer worth what I was going through physically it was too late. Four months later I was diagnosed with kidney failure. A month after that I was told I needed a  kidney transplant and another month later I was told I needed the pancreas transplant as well.

So you see not managing my stress made me lose control of my life and let the stress affect me physically and mentally. After dealing with the stress and learning new techniques I'm handling my stresses and my stress much better and it has benefited me physically as well as mentally.I'm not saying that stress is the only reason that all this  happened it was just a big part of it and often times was overlooked by me and my physicians.

Get a handle on your stress, and don't let the everyday overwhelm you. My stress regime now includes a combination of things. I use medication, therapy, meditation and this blog to handle my stress and so far I'm doing OK!! Find the right fit to propel yourself forward and you will be surprised at what you can do when stress is not an issue.

Wednesday, June 25, 2014

Skeletons

Some of you are under the impression that that I'm profound in someway, I guess if that is your opinion its ok. but I don't think of myself that way. The truth of the matter is I'm screwed up, no really I am. I'm just trying to use what I have gleaned from my experiences and life's journeys to not be, so screwed up. I just want my life to mean something, and to know that every experience good or bad has taught me something. I believe I still am unsure of what my purpose is, but I hope at least I have become a better person from  my mistakes, and I have made some big ones let me tell ya.

Everyone has some skeletons in their closets, and I have been able to go through my closet and pull out some ugly things I have done. I have learned from these things and hopefully through God and faith and my strength I will not repeat the same mistakes again. you have to deal with these things to keep moving forward and to become the best you as possible. You have to forgive yourself of the mistakes you made and love yourself warts and all. You have to cast aside animosity, hate and anger. Forgive those who have hurt you and pray and ask for forgiveness for those you have hurt. This is hard and I still have people in my life who I have to resolve issues with to free myself, but I'm trying as best I can. I'm a work in progress and the point is I'm trying to be the best me as possible

Tuesday, June 24, 2014

http://www.kidney.org/professionals/DrMcGrath_Stop_Rejection.cfm?homeslider=StopRejection

Get ya Happy Back

When you wake up in the morning you have a choice to make. Either you make the day the best it possibly can be or you don't. I know it seems very simplistic, but I think a lot of the time we just over complicate things too much. So my thinking on this is simple, either you try to have a good day or you don't!

I had a counselor at the dialysis center who once told me, that you get up every morning and greet the day! Just say "hey world I'm here", and again it may seem simplistic but it is more powerful than you think. Don't think for minute I didn't have days where I stayed in my PJ''s all day drinking coffee and feeling sorry for myself, so when I asked my counselor for help he said "the day is going to be the best you allow it to be"!!

Now I'm well aware that this is not always possible, sometimes your day is just not going to be a good no matter what ya do, but be positive and know that the there is a new day on the horizon and your going to get through. The ultimate goal here is to just put your best foot forward. We all have problems from time to time, the point is to keep going and give it your best. Moving forward, that is what you have to do. Nothing has ever been accomplished by sitting on your ass, work... work your ass off to get your happy.

We have to work everyday, you work for a check, you work for a car ya work for ya clothes, your home your vacations, why can't you work to be happy? Nothing in life comes without work or strife, you have to put int the work to get the reward, work for your happy, greet the day with new hope and new courage and a positive attitude. Get up off your ass and work for yourself!

Monday, June 23, 2014

Understanding Pain

I had a pretty good weekend doing things around the house to make it spiffy. I love our home, it is old and quirky but it has a charm to it. It has a coziness to it that is soothing. Besides that I have to spend so much time in it, I have to make it as pleasant as possible. It has so much of us in it. My husband however sees the shadows of his past in these old walls and it is a constant reminder of his painful childhood. I try to explain to him that the pain is in his heart not the house, because we have filled the house with love and good memories, so whatever demons  had once permeated through the walls are gone.  But I can still see his pain.

It is hard to understand someones  pain. We always try, but you can't understand truly unless you have experienced it for yourself. We all have called a friend and asked how they are doing just out of habit or good manners, we assume it to be a rhetorical question and expect the usual response of " Fine, how are you?" almost as repetitive ritual. We usu sally don't expect when we hear, "No, I'm not fine?" We get so excited about wanting to tell someone about what is going on that they actually have a problem is somehow departed from the ritual and you expected to listen and help.

Well there ya go, we are so busy with ourselves that we are just waiting for our chance to speak and never truly listen to people especially when they need us most. Pain comes in all shapes and sizes, and doesn't discriminate. We have all undergone some type of pain whether it be emotional physical or pshycological. Pain can be a constant burden or a motivator. The issue to me is we dismiss each others pain. So many times I have heard people say things like " oh she doesn't even know what pain is" or ' it is a bit exaggerated and dramatic don't ya think?"  Let me just say this, perception is reality. If I perceive it as such, it is my reality, therefore it is true.I have undergone pain still got dressed make up on and went about my day, and no one was the wiser. Handling pain is hard and even the best of us have had a problem handling it, and there are those of us who can't and were overwhelmed by pain and needed a escape. My mother was one of the ones who was overwhelmed by her pain, and eventually found escape.

We don't wear flashing neon signs with our pain advertised on it. Just be kind to people and realize that we have learned to mask our pain and endure whatever we face with dignity and grace. Don't dismiss us as over dramatized needing attention whiny people. And remember when you ask us if we are fine, be prepared to get a earful, and kind enough to truly listen!


Saturday, June 21, 2014

Money, Money, and Money

Today I have been going over my credit reports. This is a constant reminder of the necessary evil of money. Despite my new attitude about happiness there in lies the reality of commerce and the need for the green. Now I have said several times in my blog that I don't require a great deal to be happy, however there is a constant need for money not for happiness but for survival.

We all like to have things, but that aside my need for money has at times been a life or death decsion I'm not trying to be dramatic just simply trying to explain my needs for money. It has been a savior to me at times and the lack of it has determined my health at times despite whatever knowledge I possessed. It all came down to having the funds to acquire what I needed to get the best care for me I possibly could.

 This is where I get pissed. You see my health deteriorated several times because of money or should I say the lack there of. I believe there should never be a barrier such as money to prevent someone from getting the best care possible, however this is not the case, nor am I the only one who has suffered from lack of funds determining a healthy outcome. We are a wealthy country and knowledgeable society, and the unfortunate truth is that your socioeconomic class determines your level of treatment and health.

This should not be the case, and the really sad part is we have the tools to help aid ourselves, but are denied them because of plethora of issues ranging from inadequate coverage to poor education, of the treatments designed to help you.

A good example of this is when I had acquired a insulin pump. I had to have months of training and education to learn how to use the pump and get the best results as possible. Well the insurance I had at the time did not pay for the education classes, although they were required by the insurance company they were not covered. So I had to pay $275.00 per visit to get the education I needed to operate the pump correctly. This is wasteful stupid and just dumb. They essentially set you up to fail.

Why is so hard to provide you with complete information. You only get the whole picture if you can pay for the extra crap they don't give you. Wasteful. Another example is when I was on financial assistance when I was younger Medicaid only paid for one bottle of insulin a month and only 30 needles. not enough for the leanest of treatments. again setting you up to fail, unless you can afford the extra. It goes on and on, and its just not me, I have seen it with my own eyes, cancer patients held up chemos for insurance debacles and ineptness. Aids patients denied medicine because they had the same pills last month and need new doses. As I said I'm just one of thousands perhaps millions that can't get proper treatment because of our economic statuses. This should not be the case. If the medicine is available it should be available to all its that simple. The government state legislators and insurance companies and hospitals need to get on he same page and remember that they are there to help us and heal us not continuously line their pockets and get rich from our demise. People need to care about each other and make it less about money and we would be a better place. It may sound simple and stupid to some of you, but I can only hope that people will eventually learn that money doesn't help you heaven, but helping others and doing right will get cha in the gate!!


Wednesday, June 11, 2014

Drink it Down

Today I'm getting ready to go out of town for the weekend. I'm visiting Spartenburg with my Aunt Diane to see Gloria. She is an amazing artist. She has been a big  inspiration to me and has encouraged me to be more creative and got me painting again. I always feel rejuvenated after a visit with her, she always gets my creative juices flowing. Diane is hilariously funny and we always have a good time together. Looking forward to the times spent with friends and family.

Everyone I have met  has impacted a part of my life. Some positively some negatively, but either way it surely has taught me lessons about who I want to be as a person. Pessimism is the contagious disease that inflicts its negativity on a positive mind. I believe you must surround yourself with what inspires to achieve you dream. You must feed the inner source of your power with positivity.

The world is a complex place and it can be brutal on you physically, mentally and emotionally, but it can't damage you as much as a pessimistic attitude can. You must see that cup is half full, and then drink from the cup, and know that you will fill the cup again. Optimism is best place to help you achieve your goal, because if you won't be the positivity in your life how can you expect the universe to do it. I'm not saying if you just believe everything you want to happen will, your going to have to get up off your ass and do the work. You just need to be optimistic that you can do anything you set your mind to.

I have set my mind on being the positive and optimistic, because I have done the damn work and I know I'm going to be just fine!!


Tuesday, June 10, 2014

New Diagnosis New Possibilties

I went to a new neurologist yesterday, and got a better understanding of what has been going on with me lately. As you know from my previous post I have been falling quite a bit and I have also blacked out a few times, it has been a little scary and not knowing what was wrong made it even worse. Now armed with some more info about my condition I can begin to heal more. As it turned out I have had a severe B12 deficiency for most of my diabetic life. It has not been diagnosed til now so subsequently I have sustained severe nerve damage from this. I also have autonomic neuropathy from the diabetes as well. These two combined have been responsible for my falls and bit of the dizziness (some of my dizziness is attributed to my orthostatic blood pressure.) treatment will entail B12 injections monthly for the rest of my life. Due to the nerve damage that I have sustained I will need to use a walker or a cane permanently and wear those lovely compression socks. Some nerves may start to repair but that can takes years and as severe as mine neuropathy is that looks less likely.

Now I was a bit taken aback by this information, it was a bittersweet moment. I wanted to know what was wrong, but I wasn't thrilled with aspect of getting a shot every month and needing help in walking. But I will take my lumps and keep moving forward and become a master of jumping hurdles.

My concern now is why this has never been detected before. All the fiery hoops I have jumped through to get transplanted and the plethora of doctors I have seen over the years and no one caught this? All I can say is wow!! I'm astounded and a bit angry about this, but at this point there isn't a too much I can do about it, except take my treatment and do the best I can..

I will continue to keep my positive attitude and hoping that these injections will help with my energy levels and the fatigue I have been battling for so long. The best is yet to come and I will look forward to each new day, because that is one more day I have lived to see.
https://www.youtube.com/watch?feature=player_detailpage&v=buRLc2eWGPQ

Monday, June 9, 2014

Understanding my Journey

I saw a quote yesterday by Mila Bron  that said "I am learning to trust the journey even though I do not  understand it." I cannot think of a more fitting quote than that. I want to understand what is intended for me.
 My journey has been interesting I must say, and a learning experience. Perhaps this what the my journey is supposed to do...teach me lessons.

I have questioned my purpose more than once, but like the quote said, I'M LEARNING. I'm learning to live not just exist.  I believe my journey is to teach me to appreciate humanity's gifts. The gift of life, the gift of just being in the moment and appreciating the extraordinary beauty that exist within us. I understand that there are evils we see everyday, crimes against humanity in ever increasing numbers. We cannot let that diminish the inner strength we all posses. Even during these difficult days. There within must exist hope, for we cannot live without hope...hope in humanity! We have become are own worst enemy.

How sad it is that so many people today do not respect the special gift that is them. Whatever your journey your are on, appreciate the lesson that is hidden inside and let the journey teach you how strong you truly are.

Thursday, June 5, 2014

Peace

Today I awoke to a peaceful house, just hearing my dogs gentle slow rhythmic breathing seemed to calm me, and give me a since of peace. I like that I can just be in silence sometimes, you get to hear and see things you normally would overlook. The birds are bit louder the sun a little brighter the grass a bit greener. You get to truly listen.

I often find my quiet time can help me think without distraction, and I do meditation to help me focus on my inner self. This helps me heal and cope with the daily issues that I deal with. Despite any illness or complications or joys my day entails, there lies my reality. I still have a life and household to run. Bills need to be paid, appointments made, grocery shopping, cleaning etc. So being relaxed helps me handle all my tasks for the day and not get overwhelmed.

Each day is new, full of promise with new and familiar experiences that enhance my life. I don't pop out of bed in this zen place, but I try very hard to be there as much as possible. Anger begets hate that leads to stress which leads to anxiety which leads absolutely nowhere. We are not guaranteed a certain amount of time, I have learned mine is precious and I'm certainly don't want to waste mine getting myself into a tizzy.

Take a moment everyday and sit with yourself and get to know who you are. Silence can be a friend to you don't be afraid to hear your true self. You will amaze yourself at how wonderful you are.

Wednesday, June 4, 2014

Happiness

I have always believed that if I wasn't sick I would be happy. If I was never a diabetic I would be happy, the truth is I gave my illness power over my happiness. I know now that was a huge mistake because ultimately diabetes controlled me not me controlling it. After my transplant I really started to understand what makes me happy and by happy what it means to truly live your life. My life was never what I would call easy but who really has a perfect life not many that is for sure. For those people that have perfect lives and are perfectly happy with their lives are rare and have figured out what truly makes them happy and motivates them. For me though, it took a while because I went through a series of blaming circumstances that I believed prevented my happiness such as diabetes, poverty, parents being divorced, in and out of hospitals etc.. Then I slowly came to realize that I could no longer let  my bad experiences determine my happiness!!

My transplant really helped me realize what was important in my life. I made a simple decision to be thankful humbled, and happy. I decided that my circumstances could no longer define me. I am not just a diabetic, I'm a person that happens to have had diabetes. what a refreshing way of thinking that was for me. to no longer let the labels we place on ourselves define us. How fortunate I am to know what truly makes me happy now. Being ALIVE MAKES ME HAPPY!! holding hands with my husband, watching the sunrise, feeling the sun on my face, or rain on my head! That makes me happy, not being controlled by limitations, but accepting the fact that my life is always changing and evolving and getting to experience these changes is a blessing not a curse. Happiness for me  is being alive, it's that simple!!

Tuesday, June 3, 2014

That little voice

I haven't blogged in a few days, nothing bad happened just had too much going on lately to even keep a straight thought. Bill had his procedure with his kidney stones, and it went very well.  He also got a diagnosis for his knee, he tore his right meniscus. The doctor said it would be a easy repair, but a long recovery. The remodel in our guest room turned out nicely, so all in all things are looking up for us.

Now with all the catching up and pleasantries addressed lets delve into my topic for today which is having the ability to help yourself and listen.

 I have come to realize that everything I have ever dealt with whether it be a medical issue or a  challenging problem at my job, home, or a relationship I had to be able to think clearly and ask questions to get to the root of the problem so I can tackle whatever the issue  is with  knowledge, conviction, and determination. Now I know thinking clearly isn't always a possibility but that's why we have to that little voice in our head, to kind put us on auto pilot when we need to take a step back. The problem with that is simple, we rarely listen, even when we know we should stop and collect ourselves we plow forward head on and  into a mess. then shake your fist towards heaven and say why me? Really?? We all have the ability to help ourselves. We need to listen to what our minds and bodies already know. We get clues all the time we just have to teach ourselves not ignore the obvious. I'm not saying if you listen to your conscious that everything will hunky dory, I'm just simply saying that making a bad decision once or twice is a lesson to be learned from, but doing the same thing over and over again with a bad result is a mistake. Trust yourself more and be kinder to yourself and most of all listen to that little voice it knows more than you think.


Thursday, May 22, 2014

Fixing my Soul

When I became ill and forced into some serious lifestyle changes I became angry and resentful. Not only had my lifestyle changed so did my attitudes. It was hard to face a life changing illness, and I had to find a way to cope to keep myself from drowning in self pity and why me's??My soul was damaged and I had to fix it!

I really didn't know where to begin to start my journey of healing my soul. The truth is I never really thought about it that much, I had my diabetes to deal with, my busy job, sick parents, and a marriage hanging on by a thread, fixing me was at the bottom of the list. Then when I found out I was sick... I mean really sick.It became more clear to me to fix my life I had to repair my soul.

When I left my job and had to sit and try to get well, I had a epiphany I guess you could say, about what I was going to do. I needed some introspection. The good, the bad, and the ugly rehashed to evaluate. Not a pretty proposition, but a necessary one. So I set out in my head to do my soul searching. I found out that this materialistic narcissistic world did not need another negative vibe in it, I chose at that very moment to be as positive as I could of course that started me another journey to discover what it really means to be positive. A topic that proliferates through my blogs and that I strongly believe in.

All that material crap that we worked for all those years, the truck, the house the clothes, the fancy dinners out I mean all that is nice but it doesn't feed your soul. I needed to find that voice deep inside me again and bring it to the surface, and listen to what it was telling me to do.Once I figured out that I was not happy with those things and figured out what was really important my soul began to heal.

I reconnected with long lost family members, and feelings and happiness and just sheer joy. This is the best medicine for your soul..... love! My love of friends and family, and the sense of peace that gives me is amazing, my darkest times have been made easier but just knowing how much love surrounds me. Being able to feel the sun on my face the grass under my toes and love in my heart will keep my soul and me happy, so feed your soul everyday for it has a voracious appetite and if negleted it will die

Tuesday, May 20, 2014

Success

I had my biopsy yesterday, and my surgeon said it looked non cancerous from what he could tell. This is not from the pathology though, we will have to wait on that to know for sure, but it looks negative so far.

On the up side Bill got his appointment to get his kidney stone eliminated hopefully he will get some relief. It is hard to watch him in so much pain. We are remaining positve even though it is hard at times for Bill.

They say ( not quite sure who they are yet) that opposites attract, well in this case that has become true. I'm the optimist the glass is half full. Bill on the other hand the glass is half empty, has a the abitlity to crack, and is the last glass in the entire world what are we going to do? This makes him the worst case senario pesimist, however he always has a plan to fix said glass.  I suppose this makes us a good team, at least it defines our rolls in our relationship a little.

Bill is the fixer the true man of the house ( at least I let him think so). If something is broken he is the man on the job evrything from the car breaking down to me breaking down and going to pieces. He always tries fix whatever he can. Sometimes it does cause a fightor two.I feel parented and times, and just like a child I rebel, then the fight insues over something usually very insugniffiacant. But I have come to realize it comes from a place of love and support. He has been through so much with me, the death of my mother, lung cancer with my dad, and now my ongoing illness. Always there, even if he doesn't want too he does it, the list is endless.

I'm not saying we don't have or moments, I come from a long line of door slammers, and have a mouth like a sailor at times( I'm sure  the profaninty is proliferating through the walls as I write) and Bill can do some pretty good screaming and cussing himself.  but all that aside we are good toghther and have carried ourselves through some really rouogh times. He is my rock, my best friend, and wonderful caring human being that has carried our family far.  Other people think that we may not be successful, we don't have the fancy car, the fancy house, or lots of money. Those are not important we both know what truly is.... FAMILY, FRIENDS, AND FAITH IN GOD, With our family and friends we will always know that someone is there to help, pray for you,and love no matter what mistakes you have made or what happens in the future. That is true success, being a good human being. Because in the end we are taking nothing with us to heaven but our souls!!!!

Sunday, May 18, 2014

Biospy

Well tomorrow is my breast biopsy and I can't help but be reminded of my mother. She battled breast cancer for about 8 years till she finally gave up the fight and succumbed to the cancer in 2009. She had lost her ability to fight, her spirit, and determination. Once that was all gone death came swiftly.

I used to be angry at her for wanting to give up and just surrender, but going through what I have experienced so far I have a better understanding of what she felt. It can be hard to hang on, although I certainly am  not ready to give up the fight, I have come too far to quit now.

This will be my fourth biopsy so you can understand my apprehension. Positive attitude and prayers have given me strength that I didn't even knew I possessed, so I head into surgery tomorrow with a renewed sense of optimism and  hope.

Despite the outcome I will deal with whatever the results may be, with continued positivity and strength that has been my mantra through every battle I have ever encountered. I will be the positivity in my own life and guide myself through any and all obstacles, because after all that is what I do...move forward and endure!!






Saturday, May 17, 2014

Fear


Yesterday  I wrote about a positive attitude. Today I wanted to discuss fear, the fear we face during adversity. When I first became ill at the young age of ten with type1 diabetes, I was terrified and frightened beyond belief. the fears I had were very intense, and it started gradually after I began to realize what was happening to me and what type1 diabetes actually was. After my shocking diagnosis I was bombarded with information, facts, techniques for administering insulin, statistics. This is where the fear started to play a huge roll in my life. I became paralyzed with it and it soon started to rule my life.

I became afraid to sleep at night because my blood sugar may get too low and I may die in my sleep. I became sleep deprived and started sleeping in class at school. I also became very afraid of taking insulin without my doctor telling my mother how much to administer. I didn't trust anyone at t6his point in my life. The fear of dying had become my driving force.

Mortality is a big topic for a ten year old to grasp, I mean who wants to deal with that? I had to though, and when I finally faced my fear of dying only then did I start to live!

This is where my faith in God came into play, I decided that if God wants me then he is gonna take me and there is nothing I can do about that. I prayed for strength and guidance, and it got me through. Then I started to deal with my fear and  as time went on I became less and less afraid of death. Because when it comes down to it....it is not a question of dying ( because we all will sooner or later) it is a question of living and how to live the best life possible.

I try to live each day without fear,although sometimes I still get afraid, but that is ok, because it doesn't rule my life anymore!! 




Friday, May 16, 2014

Thoughts for the day

Positivity, I say it to myself all the time. But what does it really mean to be positive?? Do we all just put on happy faces and persevere and face our daily challenges, or is there more to it? I think so.

My theory is that we all have challenges each and every day, but here's the thing... you have to believe in the positivity your portraying, you have to live it in your soul. The reason I say this, is because that I have said I was positive to too many people over the years that I am keeping a positive attitude, when in fact it wasn't true. I have gotten too overwhelmed and pretended to be positive, and I was quit good at it, but inside I'm crying my eyes out saying "why me"?!! You have to BE THE POSITIVITY IN YOUR LIFE. I know that now, and I channel it every day, but it took me some time to really learn to be positive, it didn't just happen.

I have also come to the realization that when we face our challenges there isn't always going to be a reason why, something happened. My challenges are just that, my challenges. It doesn't mean they are any more or any less important than anyone else, just different. People often say to me I could never do what you do, how can you always be so positive and have a good attitude? Truth is I don't know, I am for the finally positive and truly mean it. My soul is living in a positive place, and that is all the comfort I need....WELL FOR NOW ANYWAY!! Stay positive and keep going!!

Mita and I, we met at Peidmont Transplant Institiute


Wednesday, May 14, 2014

I haven't blogged in a while. I've had a plethora of things going on. My head is spinning just thinking about everything that has happened so far. First I was hospitalized for a possible stroke ( later indicated a TIA,  then  the Dr. said to be a stroke. then back to TIA again, then multiple strokes in years past) Confusing I know but true none the less.

Sent home with a walker from the hospital to steady my gait, still suffering from chronic dizziness with no clear cause. I'm currently waiting  now on a Neurology consult...again!!



The entire episode was very frighting and confusing, and now a new issue has emerged. I'm undergoing a breast biopsy yet again, this will be the fourth one I have had done. I'm praying for a negative result, but the possibility of a positive result always lingers in my mind. I'm sure it going to be negative...right?? It has to be because what kind of God would make me endure almost dying (too many times to count) only to kill me now with cancer. I mean my God is not sadist he wouldn't do that to me. He would have called me  home long before all this right? Well this is what I chose to believe it keeps me sane.

I just keep praying!



Friday, April 4, 2014

I loved my time away it was so relaxing, and I really enjoyed visiting with my friends and their awesome family!! We did a great deal of fun and exciting activities, I got experience so many things and enrich my life. I will never forget the kindness I was shown.

Then I returned home to discover my reality. I certainly did not  get the reception I hoped for. We have   gone through so much, with each other that it is not always a pleasant experience. I feel as though there is some resentment we both share for one another.  I am at a loss as what to do next.

I suppose the smart thing to do is plan a visit with my therapist as soon as possible. I do wish however, that he would go with me to a marriage counselor, but he feels it is not necessary. This is unfortunate, but it is his choice and I respect that.

Moving right along... I was so inspired by my visit to the museums in St. Louis. I saw such incredible works of art, everything from fifteenth century Spanish ceiling tiles to works by Winslow Homer and Renoir. It made me want to paint right then and there. Such beauty, and creativity.

I'm very thankful for all that I have and the friends that love and support me with every decision I make. I grateful to be alive and to have such wonderful people around me everyday. I'm glad to be alive, it may not be the life I had imagined, but it is my life and IT SURE AS HELL AIN'T BORING!!!
 


Thursday, March 27, 2014

Today has been great. Everything on this vacation has been amazing. Seeing so many things and enjoying three sights of St. Louis has been very therapeutic for me. I have been able to reconnect with my dear friends and their lovely family! Missing my family though!

Vacation

Friday, March 7, 2014

My Day

Had a tiresome couple of days. It really disturbs me at the insurance crap that I have to deal with all the time. No matter how informed you seem to think you are, you are not, because the insurance companies don't want you to be aware. They want you confused. The constant barrage of paper work and repetition information is exhausting. I have become so irritated by the constant miscommunication.

Medicare sent me a statement yesterday that said I have met my deductible for 2013. Well good to know, especially since it is now 2014. I mean why is this complicated and SLOW?? The doctors office billing department are well aware of this practice however it doesn't stop them from telling me my bills are past due. I mean it is  hard enough to deal with my plethora of illnesses, I really don't feel like having to deal with the same issues over and over again.

The doctors office then proceed to hassle you when you check out saying you have a balance Really?? This not only is irritating , but embarrassing. It is not like they pull you aside privately they say it in front of whomever is around at the time. I had such a horrible experience yesterday at the eye doctor, not the treatment , but just trying to check out. The eye doctor's billing department said I had a huge balance which I did not. When I got home I went online to check my  bank account and files and sure enough I had paid them. But all I got was attitude at the office because they had recorded nothing on my account. So of course I then call the billing department to get the bill corrected, and they were too busy, sent me to voice mail and of course no  one has called me back yet. FURSTRATED.

 I also saw my nephrologist yesterday, (who is great by the way). He asked how I had been since my last visit. I told him that I had been burnt  out by Dr appointments and had to take a break for a while and he understood. I also indicated to him that I have been seeing a therapist for my depression. He asked my why I had been feeling depressed, I had overcome so much and should be happy at how far I had come. Bill also agreed with his statement. I had to explain to them both that the pain I continually endure causes me to feel depressed, and the side effects from the drugs is quite dramatic as well.

I don't mean to seem like I'm whining or ungrateful at all, it's just hard to function some days, and some days are just harder than others. My body has undergone so many changes that have, in some instances been traumatic. I t is going to take some time to find my place again, and I hope that I do. I'm certainly not just sitting on my ass. I needed help and sought it out! Hoping and praying for peace and resolutions.            

Friday, February 28, 2014

I have about had it with this health care system. When will our government understand when they decide to make ignorant, and ill informed decisions that "we the people" have our health jeopardized? These haphazard decisions put our lives at risk. Everything from serious test being denied to life saving medications such as insulin persciptions needing repeated approvals. It is a constant exercises in futility. I for one have had enough.

 We have voted people into offices and positions of power that have promised to help, and lied to our collective faces. Why is it so hard for them to understand that their constant bickering and non bipartisanship is costing our lives literally. People are dying, because of this health care system failure. There are constant stories of people falling through the cracks and not getting the help that they so desperately need.

This idea of having people being forced to get insurance only served to make the poor and the ill even more so. This is just another way for insurance companies to continue lining their pockets at our expense. I am very supportive of wanting and needing change, but it doesn't take a a genius to see that this is not the working.

 I wish that for one moment that a congressman., our President, or any of our representatives could experience a life altering  decision of whether  to pay a for electricity, water or medicine.  I just don't get why it so hard for people to care about one another. Why do we not see the bigger picture, has greed and the need to constantly get more and more from others become what we strive for?

If we cared more about each other perhaps health care wouldn't such a issue. Common sense and knowing right from wrong shouldn't be so rare. We know the current status is not working. Let's change it. remove all the government red tape make things easier, quit overcomplicated everything. I f we go to the Dr. and says we need a test or a persciption lets just do it, do not make it necessary to get several approvals to say the same damn thing. If someone needs a kidney transplant don't pay for dialysis forever and not a transplant that is cheaper and healthier in the long run. If we know that it is broken why doesn't our government?

When Seth Rogan approached congress the other day and one by one  members began to leave, all but two. Why can't they hear us? Stay listen, learn. Isn't' that what we elected you to do??

Tuesday, February 18, 2014

I went to my first therapy session last Friday. My psychologist and I seemed to have a good rapport, which made me more at ease with the therapy session. She said I appeared to be suffering from clinical depression, and possibly some survivors guilt from the transplant. This is going to be another difficult journey for me to endure, but one I  must take. I have come to realize that I need help to move forward.

I feel disconnected from my life. It has changed so much in such a short time, that I no longer recognize myself, nor can I fix it. I have in previous situations always been able to pick myself up and ''shake it off "so to speak. I feel broken and fragile these days, and overwhelmed with emotions.
Please understand that I'm very grateful for the gift of a lifesaving transplant. I just wasn't mentally prepared for the changes that were in store for me.

I really thought after transplant I was going to be brand new and unstoppable. It has made me feel better physically, though I still can't do some of the things I miss doing. I don't know really how to put into words how all this has changed me. I just feel lost and confused scared and unsure of what I should do next.

 I really feel like a piece of snow in a snow globe that keeps getting shook up. Floating in a glass bubble never knowing where I'm  going to land.

I'm really hoping to get through this funk and find my purpose and most of all peace.

Friday, February 7, 2014

I haven't been blogging for a bit because of my eye issue. It is beginning to clear up a bit, so I'm able to type a little better. I have been having a some depression since the transplant although I probably had it all along. Whatever the reason I have decided after speaking to my doctor that this is bit more than just a medication issue. My mother suffered from bipolar disorder, and possibly schizophrenia, severe depression. I just don't want to go down the rabbit hole. Trying to stay sane and not get down all the time has been daunting to say the least. I'm staying positive and realizing it's OK to ask for help.  This is a turning point for the better. I wish my husband would also go. We have experienced so many issues over the years which have taken its toll on our marriage, he doesn't see problem. That in itself is a problem for me!! Hello I'm trying to work everything out.

Thursday, January 16, 2014

I received some terrific news today. I went to get my pathology report from the oral surgeon today, and he said there was no more cancer. All three sample were benign. I can't tell you what a relief it is not to have cancer. The first sample indicated dysplasia, which is pre cancerous, the second was a malmalenoma, and third sample turned out to be keratosis, which just some scar tissue. THANK GOD!! I'm over the moon with this good news.

I would like to thank all my family and friends that prayed and supported me through my little rough patch. I couldn't have done without everyone's support!

POSITIVE THOUGHTS YIELD POSITIVE RESULTS!!!!

Stay on a positive path, pray, and don't be afraid to take a helping hand. Positivity feeds the mind, body, and spirit. It is a essential part of the healing process, and I think one of the most important.

Wednesday, January 15, 2014

Morning all, hope everyone is doing fine.

Spoke to my Dad today, and he is  trying to get his daily meds through Medicare. To delve into this you need to be aware of a a few things. First, and most importantly he is a lung cancer survivor and a diabetic. Second: he is  currently taking medications to maintain his breathing and diabetes. These meds are a necessity and maintain his current health.

He is currently on Medicare for his coverage. They changed his carrier to another. No notice, no time to adjust, just bam done! How is this possible? Now the new carrier decided that one of his insulin meds is not covered, and none of his breathing meds either. He must now gets his doctors office to prove he actually needs this required medication. Really? The system is broken here. Your going to interrupt someones care because of ignorance about medications. These are not policy decisions here this is our lives. Quit playing Russian rolluet, with our lives and use some damn common sense.

This is not the first time I witnessed this. The Medicaid system did the same exact thing to my mother while she was battling breast cancer. They actually suspended her chemotherapy treatment because she needed to go to a general prationer to say she had actual cancer, even though she was seeing and being treated by a oncologist. It's absolute insanity. And it needs to change!!

Tuesday, January 14, 2014

Transformed by Transplant: Thanking God and my donor for my life!

Transformed by Transplant: Thanking God and my donor for my life!: Thanking God and my donor for my life!
Great morning so far, made a appointment for my eye issue yesterday. Hopefully there is not too much damage.Moving right along the topic on my mind today is advocacy. I can blame some of my health issues on the medical treatment I received or lack thereof, but not everything is their fault. What  took me while to realize is that  I  had more power than I realized. The power of being my own advocate in my health care.

I strongly attribute my success in gaining control of my health care from learning to ask questions, and not being afraid to be assertive. I think most times people fail to realize that the doctors work for you, not the other way around.

When I was first diagnosed in the eighties we didn't have the Internet to supply us with information like we do now, it took some effort. My Mom spent hours in the public library, reading and researching everything she could get her hands on. I went to classes and support groups, but they didn't usually offer much information. We kept up with research and breakthroughs as much as possible. We had to advocate our interest to my doctors, and stop them from rushing us through their cattle line of care. I cannot tell you how many times we avoided tragedy and malpractice by being our own advocates, from everything to wrong doses being administered, to to shoddy medical diagnostic equipment. It is our job as patients and care givers to ask questions, ask your nurse in the hospital what your are being given. What's the dose? Who ordered it and why? You can say no if you don't recognize it or don't understand why it is being given. Most hospitals and doctors offices will provide you with information on procedures and drugs, you just have to ask. You are your own best weapon in fighting for your health care.

Monday, January 13, 2014

Thanking God and my donor for my life!

Morning all! Having a bit of trouble with my eyes today. I suffer from Diabetic Peripheral Retinopathy and I had a blood vessel rupture again, in a my left eye this time  (it's usually the right eye that gives me the most trouble). Blogging today is a bit of a challenge, but I feel as though I need to do it. I have come to realize it has been very cathartic for me to keep doing this blog.

The transplant wasn't the only incident health wise, to happen to me. When I was 10 years old I was diagnosed with Juvenile Diabetes.Struggling with that for many years caused a plethora of issues resulting from uncontrolled diabetes. I have : PDR, Gastropharesis, Neuropathy, Kidney Failure (resulting in the transplant), and most recently mouth cancer from the immunosuppresant drugs.  Through it all I tried to keep positive and move forward with my life despite setbacks.

Growing up this way sure wasn't fun, but I have to say to the main reason that I ended up in a downward spiral was lack of good quality medical care growing up. Not having insurance because of a preexisting condition was brutal. Limited by Medicaid as to how much you could have in medicine was stupid and dangerous. Only 1 bottle of insulin a month ( I used 2), 1 bottle of blood sugar test strips, no urine test strips,.I couldn't get approved for referrals to Endocrinologists, long clinic visits with  no result, and inexperienced staff at hospitals and clinics that didn't know how to treat a diabetic child. I was lost in the government shuffle.

Fortunately I'm no longer a diabetic, however the damage is done. My hope is that the Medicaid and Medicare can catchup with the strides in treatment. When I was younger I really would have benefited from a insulin pump to manage my disease. Medicaid didn't pay for them. Diabetic treatment has grown leaps and bounds in just a few decades.Medicare and Medicaid need to catch the hell up.


Sunday, January 12, 2014

My journey has been difficult. Despite those difficulties, I have tried to maintain a positive attitude, although at times it was hard. I found comfort in prayer, friends, and my family. I am so very grateful for everything I have. The transplant has made my life so much better. I often think about the family that lost a loved one and allowed me to live. You feel as though you want to take on the world, give back as much as you can so the family that donated to you, are proud of what you did with your  precious gift. I was fortunate to have a medical team that really treated the person, not just a ordinary patient. They really tried to help you navigate while you were there. Then you're home and you are own your own, and freaked the hell out.

Getting to the transplant stage was fraught with so many obstacles. The red tape is astounding, I mean it just blows your mind at how disorganized the whole process was. It was demanding and frustrating. The insurance company and Medicare never would work together,even though they know the rules of the pre authorization game. They just don't want you to know.

My feeling about giving back is with knowledge. The knowledge of trying to navigate the medical nightmare that was created by insurance companies and medicare.  I was so confused and frustrated by that process that sometimes, all I could do was just put my head in my hands and cry. It was a fulltime job jumping through the medical hoops that have been created by policy and ignorance of the illnesses.

I had to be my own advocate. After leaving my job due to my illness unbeknownst to me, I had gained a new job, navigating the medical community. 
This is my first blog on this forum. I am excited to be able to discuss topics pertaining to the struggles we face daily following transplant. The gift of life  is the greatest gift you can ever receive, but with that comes a great sense of responsibility and sometime survivors guilt. Also the constant battle to maintain and pay for the costly life saving medications that post transplant require.

I hope to be able to help myself and others navigate through this difficult journey.