Putting My Worst Face Foward...

I didn't always see myself as "pretty". In honestly any sense of the word.

I was your average American tomboy girl. I loved being barefoot, in jeans or shorts and a comfy shirt. I hated dresses and makeup. In fact, I rarely, if ever wear either of the latter to this day. And I'm about to turn thirty-five.

As a teen, I had your basic teen acne. Or so I'd thought. I had some pretty icky breakouts. Especially around the time of a hormonal flux at the nearing of my menstrual cycle.

After years of trying everything, by my 19th birthday, it all just went away. I went on with my life. Had gotten married, had a child, divorced. Remarried, had two more children. Also I'd lost a child in between the middle and youngest.

That's also when my breakouts came back. Right near the loss of that baby in 2003. And they came back with a vengeance.

After having my youngest child, who is now seven years old, and in the First Grade, things only had become worse. But I figured that over time, with my hormones getting back to a normal level, everything would just clear up again.

Oh how WRONG was I with that assumption. If anything, they had become worse.

By the time she was a year old, my face went to looking like this with Rosacea...

And yes, it steadily got worse than this. To the point that it hurt me emotionally, psychologically and even socially.

I hated leaving my home. I didn't like to be out in public. Not looking like that! People would stare. Little children would ask what happened to my face, as they pointed and had that look of disgust upon their faces.

There were times that I was even embarrassed to be around my family, wondering what they thought of how I looked. On occasion certain members of the family would "grill" me on what I ate, what I used to clean my face and whatnot.

I did NOTHING wrong. I ate NOTHING wrong. It was NOT my fault. But it certainly felt like I did SOMETHING wrong.

Eventually the Rosacea went in to an area of the body I had NEVER heard of it even being possible.

My eyes. But it primarily attacked my left eyeball. And I went to a Ophthalmologist who sadly MISTREATED me for the wrong infection. In the end, the Ocular Rosacea (Subtype 4) ate away most of the cornea (outer window of the pupil that is your eye's lens) in the left eye.

At times, my face looked like this man's...

And yes, my eye would like like the one in this picture...

In the end, after my cornea had perforated (had a hole in it), I looked like this..

Not even two weeks later, thanks to Ocular Rosacea eating away my cornea, I had no choice but to have an emergency-based Corneal Transplant (Keratoplasty) and required a full graft of another person's cornea after they had died and were an organ/tissue donor.

Here I am 2-weeks post-op...

And here I am 2 YEARS later...

As for the Rosacea, it is now under control!! I am on Doxycycline pills. And will most likely be on and off of them for the rest of my life.

Plus, soon, seeing as I can no longer have children, we are going to try a cream medication after removing me from the Doxycycline pills in a few months. And if need be, I may even end up being on both to ensure that when I have an "attack of the pimple kind", it will not be that bad, and will be staved off from being inside my eye.

Here I am today, pimple/Rosacea free (for the most part)...

I still have breakouts. Mainly around my cycle. But it's now just a bump here and a bump there. Yes, they CAN be painful, swelled and very red. But at least I'm NOWHERE near as horrible looking as back in the time of my youngest being a baby.

I'm more confident, knowledgeable about my conditions and am no longer afraid to walk out of my home, only to face ridicule from strangers young and old.

Cornea Transplant Update

Okay, first of all, thus far, it seems it is NOT rejecting. But it was getting infected, and in turn THAT could have started a graft rejection, if I waited another day or so.

But I did have the BEGINNINGS of an infection, thanks to a stitch that had popped loose from the graft. So, the doctor I had to see on Triage/emergency basis removed it just with the tweezers. I asked and SHE (who is a Retina Specialist, not cornea) said it was ONLY the popped stitch, and kept me on my OmniPred steroid drop every 4 hours, and added Vigamox antibiotic drops 4 times a day.

Well.....

I'd gone back yesterday (Monday) for a re-check with my regular doctor, the Cornea Specialist. And he found something that must have developed over the weekend, otherwise the other doctor, I'm certain would have seen it while looking at my eye on Friday.

It seems that I have developed an abscess where the stitch was loose and just "floating" there. So, now I am a self-proclaimed walking Drug Store. At least through tomorrow morning, when the decision will be made to either keep me on my drug plan, or take a knife (again) to my eyeball (same thing he said, as when he removes the stitches). Yes, he may have to lance the abscess, let it drain, and grab a culture to see exactly what kind of infection is growing.

Of course, I'm hoping and praying feverishly that the drugs all are WORKING.

What's my drug regimen, you ask? The kind where it has made it impossible to volunteer at the school at all this week.

Twice a day, Aleve (one in morning, one at nighttime, both with food).

Once a day, Doxycycline (at bedtime, no dairy/calcium at least 2 hours before taking)

EVERY (waking) hour, Vigamox drops (antibiotic to stave off rejection and bacteria).

Every 2 hours, OmniPred drops (steroid) to ward off swelling and inflammation and eye pressure problems.

Every 4 hours, Bacitracin Ointment in lower eye lid, also an anti-bacterial medication.

To say I feel like I'm on a never-ending merry-go-round is probably a horrible understatement at the moment. And I have to do this regimen AT LEAST through a part of tomorrow morning. Probably even longer if he has to cut in to the abscess.

But!!!... Yes, there is a "but". There is a so-called silver lining in all of this mess.

It seems (seeing as I haven't seen the doctor in over a year) that we BOTH got a surprise. Because the doctor on Friday claimed I still had five stitches to go, but I don't know if she was actually looking for anymore of them other than the infected one. My regular specialist (Cornea) said he saw NONE.

Either he already removed some (which he did, a total of eight altogether), the other doctor removed the one, or they even actually DISSOLVED somehow, though they aren't considered "dissoluble" by what I had always understood.

So, that is ONE less worry to have to go through anymore. And that is apparently why my vision was now pegged in that eye as being either 20/50 or 20/40 (depending on which test I took between two different eye chart tests that they give me).

We'd talked about it many times in the past (and yes, he reminded me yesterday lol) that as stiches came out, being that the graft was sewn in pretty tightly and "flattened" it, to where it 'touched' my pupil, that the cornea would round its self out, and that this is FINALLY happening..

Now it seems that it is NOT the stitches, but the cataract that I have had since about a month post-transplant, that is hindering my peripheral vision on the outer left side of the eye.

So, of course, that means I am STILL facing (at least) one last surgical procedure to remove the cataract-ridden lens, and have it replaced with an implant.

So, there's the current news from the last post, If It's Not One Thing, It's Another... (WARNING!!!! language laced!) .. At least this one isn't filled with words that would make a sailor blush and pass out. (=

If It's Not One Thing, It's Another... (WARNING!!!! language laced!)

Yeah, I feel like having a pity party. If you want to join in the "fun", be my guest. But if you feel like telling me I should be thankful and that I should feel blessed or lucky, then go the fuck on to some other page, because honestly, I'm in no mood to hear it.

For one thing, I DO count myself as being lucky AND blessed. I have been given a wonderful gift from someone I'll never have the pleasure of meeting and thanking. That hurts my heart a little, each and every single day.

And yes, I am EXTREMELY thankful to the person and their family for being HEROES and giving me something that was almost completely taken away from me for the rest of my life.

My sight. And even my entire eye.

But I also have a RIGHT to sometimes be angry. I have a right to vent. And if you don't like it, then please spare the both of us, and go on. Today is not a good day for you to try your positivity thing on me. Because right now, I don't see a "silver lining". Most of the time, I do. But today isn't your lucky day.

Nor is it mine.

You see, I very well may have scratched my cornea, thanks to (once again) my own stupidity. But it seems I was able to get it taken care of on my own.

I've been using my steroid drops religiously (for the most part) and my eye seemed to be doing A LOT better. But I did (accidentally, due to being extremely busy and thoughtless) forget to use my drops. At all. All day.

Now, my transplanted eye is giving me fits. It's not in pain. But it is red (mainly on outside side of the eye) and a bit itchy, and burning a little.

Yes, I've been careful to keep up with my drops. And it IS helping. But... I am getting a growth of concern.

So, it seems that once again, I will have to go in, when I honestly cannot afford to, and see if the R-word is back.

Rejection.

Yes, people, a CORNEA (tissue) transplant can and DOES reject, sometimes. If that is the case, then this will be my second bout with it in the last two years (transplant-iversary was 10/29/2011). I'm hoping against hope that in reality, it's my stupid ass allergies affecting it.

Along with my eye being a bit teary, red and itchy/burning, my nose is like a leaky faucet. And it's only happening on the left. Both the nostril and the eye on the left side of my face.

I'm just sick to death of this crap. Why? I knew that I had really no choice, but a transplant. Otherwise, it was lose the entire eyeball. And I knew I was "trading one set of problems for another". But DAMN IT!!! This has become utterly ridiculous.

It seems like EVERY fucking time shit's going good with me and my eye, something JUST HAS TO happen to cause another blow to my self-esteem and to my recovery process.

It's really getting old. And yes, sometimes, I do wish that they would have just taken the whole eye. It would have saved me a lot of trips to the doctor. It would have saved a lot of worry and fraying of my nerves. And it would have saved a lot of money that I really do NOT have for this on-going, life-long after-care.

Now, there is a (at this point, minutely) small chance, that I could be going in to rejection again. And IF I am, then we will once again try to (successfully, like last time) reverse it. BUT!.. There is always that chance, that fear, that it cannot be reversed. Which means another transplant. Another surgery I really cannot afford. Another person's death to save my sight.

How in the end, is ANY of this shit fair? If I'm rejecting and the cornea has to go, I know that I will feel like I let down my donor and their family. That they gave of themselves in vain. I failed, if indeed, I cannot save this cornea. And it will be MY fault. MY doing.

It scares me. Even when my eye IS doing really well. But it scares me even more so in times like this.

It's That Time Again...

Leaves are turning to vibrant and almost magical-like colors. Hues of orange, yellow and red are all popping up around on the hill and mountainsides of the Appalachians. I love Autumn here in Virginia.

It's also time to break out hand-me-down costumes, or purchase new ones for the kids that have outgrown them all. And not to mention, buying the goodies that you will be passing out to the little fairies, ghosts, superheros and goblins.

And for me personally, it will be my 2-year-anniversary post-transplant for my eye. It's strange to know that already two years has just flown right past me. I still wonder about my donor and their life. And I often think about the donor's family, that I will seemingly never have the pleasure of meeting. I even throw around the idea of maybe even writing them an update letter.

Also, it will mark 22 years since my mother passed away, on the same day that I celebrate my anniversary date. Wow!! 22 years. How is even possible? It certainly to me, does NOT feel like that much time has gone by. But it has.

As you can see, I haven't even posted on to ANY of my three blogs in well over a month. I pretty much have given up writing on them. For various reasons. And honestly, for the most part, I do NOT miss this. I felt freed up, truthfully. I don't feel mentally pressured to crank out posts. I have never been in to blogging as to be popular or get mega numbers in followers/readers. I did it/do it as a release for my mind and to just talk about things that interest me, and maybe bring awareness to topics (like Pregnancy & Infant Loss month, which coincides with Breast Cancer Awareness month...but is overshadowed by BCA).

So, consider this my update, but don't be too surprised if I don't jot in this area again for another good while. I really don't feel the "love" for blogging like I had once had. And I'm okay with that. If I lose followers/readers, I'm not going to cry over it, or lose any sleep. But it's nice to know that there are a FEW people that follow/read me that genuinely care about what I have to say on here. To them, I thank you from the bottom of my heart. And I thank you for still sticking with me, though you know it may be like forever before I write again.

Later taters!!

Donation... Give the gift of Smiles & of Yourself.

A while back, I had written a post about an experience that took myself and my husband by surprise. We knew that when the time was right, we were going to pass on the gift of giving to someone. We have since been on the lookout of who and how we were going to "Pay It Forward" to.

This is a concept I already had in mind for myself though, since I had turned the age of eighteen. Since then, I have been a Registered Donor to donate anything I can in the event of my death.

Who knew that at the age of thirty-two, just fourteen years after becoming a Donor, that I also would be seeing the whole topic of Organ/Tissue Donation from the other side of the fence. You can read my Corneal Transplant Recipient story HERE.

But also, I have been able to "pay it forward" monetarily. And thanks to the donations that were all pooled together, a record twenty-five children were able to purchase books at the Spring Book Fair at school.

Hayley had found a $100 bill in the school's soccer field a while back and brought it home. Sure I got on her for not turning it in right away. But then, I myself constantly forgot to take it with me to turn in as well.

So, seeing as so much time has passed, we (Scott and I collectively) decided to donate the $100 to the school's Library for the Book Fair's "Students in Need" box. After the totals were counted, there was close to $190.00 to split between the kids. Pre-K through Fist grade students were able to spend up to $5 and those in Second through Fifth grade were able to spend up to $10.

It felt wonderful to see the long list and know that so many children were being helped this year. I'm NOT happy that they had to be on it, because of such financial hardships in their families. But I AM happy that these kids were able to continue on the path to a wonderful love and enjoyment of reading.

Although, there is something else, along with the love of reading that is very close to my heart. That is Organ/Tissue Donation Awareness. Not just because I am a Registered Donor, as is my husband. But because we as a family have experienced firsthand the miracles of Tissue Donation. To be able to regain (most of) my sight back is an honest miracle. And as a mother, being down just ONE eye is hard to deal with. No matter how much you do to "adapt".

Did you know that you can be a LIVING Donor? Blood, a piece of your liver, a kidney, bone marrow, tendons and other tissues.

Then, you have Donors that donate skin, corneas, major organs such as your hearts and lungs. Plus cadaver (deceased) donors can give their tissues, bones, livers, kidneys, and intestines.

Right now, in the United States of America, the statistics for Recipients CURRENTLY awaiting their "gifts of LIFE" stands at (provided by Organ Procurement & Transplant Network)..

All Organs 110,484
Kidney 88,087
Liver 16,164
Pancreas 1,384
Heart 3,188
Lung 1,758
Intestine 265

As a Registered Donor, you can potentially save up to eight people's lives, and enrich and better about 50 lives.

Giving has always been a part of me and of who I am. I give what I can, where I can, when I can. So signing up to be an Organ/Eye/Tissue Donor was a no-brainer for me. If you are interested in becoming a Donor, please visit OrganDonor.Gov or United Network for Organ Sharing (UNOS) and find out more Organ Transplantation and becoming a HERO, and to find out how to register in your state or Provence.

Because to us, our Donors (living and deceased), and their families are indeed our HEROES!

Death Panels...Since when is one's life "not budgetable"?

Arizona has a Governor without a heart or a soul. Her state's budget cuts are not only "saving" money, but are also COSTING lives.

Now, two people are dead. Thanks to the budget cuts and the insurance's refusal (due to said cuts) to pay for much-needed transplants.

There's now a list of people in the state of Arizona whom will surely die, being that their assurance of insurance has been cut off because the insurer will not "be able" to pay for the transplants.

Including the one this past week who was needing a kidney transplant.

Yes, the insurance I am speaking of is Government-funded Medicaid. The state's funds for the insurance that helps those that are low-income, too disabled to work or meet other criteria for the (supplemental) insurance will be cut by $1.2 million.

Luckily though, the citizens of Arizona have Senate Minority Leader-Elect David Schapira (Democrat) in their corner. And he is asking to have *emergency* restoration of the Medicaid funds to be put in to place. But only for certain types of transplants.

Thus far, 98 patients are on that list.

Patient Mark Price died in November, as he was desperately awaiting a bone marrow transplant.

Read the full story at... CNN.com

As a transplant recipient myself, to see these kinds of cuts made at the expense of human life, is utterly deplorable. Shame on the state of Arizona, and it's idiot Governor, Janet Brewer.

Rest assured though, that in the event that herself or one of family members or close friends (who were on Medicaid, thanks to job loss or lower income status) suddenly required a transplant of some type, she would be fighting tooth and nail to get their insurance to pay for it.

But hey, it's no one special or important (to the dumb hag called 'Governor') so she feels that she can go to lay her head down at night without the guilt of knowing that she (literally) signed almost one hundred of her citizen's death warrants by her actions of slashing the access to their medical insurance, and to much-needed medical care to stay alive.

Sure, it was "just an eye" to most people. But saving my sight, as well as my entire eye was of utmost importance to me as a mother of three children who are all still under the age of twelve.

If my insurance wasn't there to help cover the cost of my (**$23,000.00**) surgery to have my cornea replaced with a cadaver's cornea, then I would not have my sight, let alone the eye its self. And being a mother, it would have hindered (somewhat) my being the mother I am to my children.

What kind of person wishes to slash funding as to let others be there with their children and grandchildren? A thoughtless Government Official such as Governor Janet Brewer, is who! And the scary part in all of this? If one state does something like this to "save the state money", then most often times, even more states follow and institute these cuts as well.

And that's a scary thought in its self! It will go from just under a hundred, to hundreds, then to thousands. Then, quite possibly the "movement" could cost MILLIONS of lives here in America.

Is this really what our country's Government was built to be all about? Money over it's people.

The more I look, the more I view it in this manner. And it frightens me more and more a bit each and every day, that our children and grandchildren's lives will be placed on the front lines as a means to save a few extra bucks for the Government Officials to pocket.

The money NEEDS to be put back in place. At least some it it, anyways. And for the most needful of transplants (heart, lung, kidney). And Arizona's guidelines on insuring transplants needs to be overhauled as well. No one's life is above another's. Or at least it shouldn't be.

I can understand (at this time) that they cannot cover ALL types of transplants. But give those with the biggest fights ahead, the biggest chance at living.

Is this really too much to ask, Gov. Janet Brewer?

One Year and Counting

Yesterday was filled with a lot of laughter, smiles and fun. But deep down, I knew exactly what the day was all about. Some of it, sad. While, for the most part, good.

I'd spent the entire school day in my youngest daughter's Kindergarten class. We carved real pumpkins in "teams". Then we did a ton of different crafts. Including my 'Jack-O-Lantern Jug' that they have an option to use as a candy collection jug for Trick-Or-Treating.

After trying to think of something to do to commemorate the special meaning of October 29th as being the Transplant Anniversary since having my new Cornea placed in, helping me to once more see, and even be able to keep the whole eye that at this time last year was ravaged with infection to the point is nearly impossible to save it, I think I found my way of honoring my Donor, their family and the significance of the day.

I had fun. I smiled. I played with the wonderful children I help every week in the classroom. I even danced with the kids at the Halloween Dance that was put on for them after school. I lived life as I always have. As a survivor of the hurdles I have had to face, and as the mother I was before my sight in the left eye was robbed, thanks to infection and an accident.

As I sit here and think back about the past week, I honestly cannot think of a better way to thank and honor such a gift, or the Donor that gave of themselves. To live my life. Be happy. To be the mother that I was meant to be to my children. To be the wife I have striven to be for my husband for the past eight years of our marriage. To be the friend that I have always been or have to tried to have been to others.

My donor gave me what was robbed of me in a matter of seconds. Even though apparently, the damage was already severely done over the prior months before. But it took just one accidental poke with my own knuckle to complete what the infection set out to do. To take away my sight completely from my left eye.

Almost a month later, my Donor gave me their cornea, thanks to their loving gift at the end of their life, and to sheer luck that one was readily available to fit my needs.

At first, it killed me inside to know that I had to have someone die to let me live my life as I have always known. I had "Survivor's Guilt". Especially when Thanksgiving and Christmas came around. I knew that as I sat down to dinner and opening gifts, another family was sitting around grieving and wishing that their loved one was still here to enjoy life and the holidays with.

Now that the year has come along, and I am pretty much back to normal like before all of this had happened, I no longer try to think about things in a "sad way". I know deep within my heart, my Donor is happy with my getting back on with life and enjoying being a wife and a mother.

They gave me my life back. And for that, I will FOREVER be grateful. To them, and to their family. And I have realized, at least for me personally, the best way to honor them, not just on October 29th, but EVERY single day of the year, is to just live my life to the fullest capacity, smile as much as I can, and know that THEY TO know just how thankful that I am of the gift that they bravely and heroically gave to me.

So Many Thoughts Come to Mind...Ponderings On a Rainy Day.

In one month and two days from today, it will be a milestone. And a lot of different meanings.

For one, my childhood friend, Lisa's birthday is on October 29th. We just recently reconnected, thanks to FaceBook, after almost 25 years of dropping off the earth to one another. Then, soon followed by her three sisters, Neva, Dana and Rena.

Then, add in the fact that it will be 21 years since my mother's passing. Over the years it has gotten much better to take in and deal with. I know she will always be with me in my heart and in my memories (what few I have left of her and our time together).

The biggest milestone to come on October 29th though is...

It will be my one-year anniversary since my Cornea Transplant. While I'm happy to have the sight that I DO have in it now, compared to before the surgery (and the fact that I have a cornea), it will also be a day of mourning.

Yes, we recipients DO mourn the passing of those which have given us our second chances. We never (in most cases) were able to meet them in life. And a rare few of us get to meet the families that are mourning the loss of their loved one that donated to us. But we are very thankful and grateful, none the less. And it hurts us to know that another family is out there, somewhere, hurting and are not able to have the time with their family any longer, as we recipients share in the joys, trials and tribulations of our families.

It's on days like this, where it's damp, chilly and rainy, that I sit and wonder. What if my mother were still alive? How would she have felt of my moving across to the other side of the states? How would she think of my husband? What nicknames would she have given her grandchildren?...Would I have still had that stupid trache until I turned 18?

I also wonder who my donor was. What is their gender? How old were they? What were their likes and dislikes? Was their family life filled with love and laughter?

So many thoughts to ponder as I sit here, sipping my coffee and listening to the stillness of the house, as the rain beats down and the cars are passing by on slick roads.

The Life And Limitations Of A Corneal Graft Recipient

Over on my profile page at Facebook, a friend of mine had some questions about my Corneal Transplant that I had done in October of last year. I'm almost eight months post-transplant. Barring a few complications, so far, I'm doing quite well.

My friend's father had passed away a while back, and she had his corneas donated. They went to two different individuals. Thanks to her gift of her father's corneas, two more people are able to see the world around them.

There is sadly not as much conversation, education and awareness, as well as support for Corneal Grafting Transplants. We seem to be on the back burner. Mainly because to many it's "just an eye" and it's "just tissue". But the reality is...it is SO MUCH more than that!

Corneas are literally the windows to the world around us. Without corneas, you would not be able to see. AT ALL! Nor can you protect your eyes from MOST infections. Especially those that are air-borne caused.

Like many other things. Your eyes (and your corneas) get taken for granted. That is, until you lose the cornea, your sight, and almost the entire eye(s).

Here are the questions that she asks, and my answers.

Can you drive after you've had a cornea transplant ? No, not at this time. Due to complications of tight stitching and an ever-more developing Cataract, I am Legally Blind and would not be able to see things clearly from the left side or from my peripheral vision, which is still limited as well.

What about contact sports, swimming, flying etc? I can now just go back in to the water, but must be careful doing so. Contact sports are still a no-no. Flying, I don't know of yet either. I'm hoping to be allowed to get on roller coasters this summer with my kids at King's Dominion. Should know today, being I have a two-month checkup this afternoon.

Can the pressure from those cause damage to the transplant ? Ocular pressure certainly can harm the transplant. This is why it is checked at every visit. And for the first six weeks post-transplant, I wasn't allowed to bend at the waist, pick up objects (even my child) if they were over a specified weight, and even sex was banned.

Also, for the first week, I was not allowed to take a regular shower or wash my hair. I wasn't allowed to use face wash for the first month. I didn't color my hair again until like four months after surgery.

Just the other weekend, I got in to the pool. Before then, that was a no-no due to the chemicals used.

We (Corneal Graft patients) are placed on the ocular version of Prednisone. The side effects remain within the eye region, instead of having overall systemic effects.

I'm pretty sure I have some nerve damage in the way of nerve sensitivity. Now extreme heat (over 350 from an oven) and extreme cold (like from a freezer) either gives me a sharp pain or a "searing" feeling. I noticed those the first time I got to cook again, and when I opened a freezer section door at the store. And it's been like that ever since.

If anyone has ANY question in regards to Corneal Transplantation, or Donation, please feel free to ask away. Also, if you have yet to become a registered Organ/Tissue/Eye/Bone Donor, please click HERE and become a HERO.

WIMTS (What I Meant To Say) with Angel.

HAHA!! Seems that today, where the blogging world is concerned, I am....




This is (to my knowledge)my first WHAT I MEANT TO SAY post. And if you were to ever ask Angel over at http://singedwingangel.blogspot.com/ she will tell you I'm not one to sugar coat things. On MANY different subjects. And believe me when I say, some are HEAVILY laden with expletives. So, if you don't want to know what is *truly* on my mind, then I suggest you back it up and go somewhere else. Cuz my mind (at times) can be pretty mean and bitchy.

So without further ado, here we go!

What I said...

Let's see how I can correct this problem with my son's payments. < To the lady at the SSI office concerning my son's SSI Disability payments.

WIMTS.....

WTF is this shit? If I had that much money coming in to my home, I wouldn't need your damn help! My hubby would have to make almost four more damn bucks an hour to make this pay. What kind of damn math do you people use?!


What I said....

It's okay. We will get this all fixed. I have enough meds to get B through. < What I told the "Office Manager" at the doc's office while doc was on leave, and trying to fix insurance problems.


WIMTS....

Look here asswipe! My kid NEEDS his medicines. How many times shall we jack aouund and how many times you plan to play this off? You best be glad I *have* back up bottles or my kid would be screwed. Even your damn NURSE who has NOTHING to do with this shit of dealing with insurance has done a BETTER job at *YOUR* job than you obviously are. She actually GOT SOMEWHERE!!


What I said...

Emails are sent to ALL members by the group's co-founders. And they are not sent very often. If you wish to not receive them, there is truly only one way to stop those...That is to leave the group.

If you are not happy here, then no one is forcing you to stay. Are you new to the group? Because this is the FIRST time I have ever seen you post anywhere on this forum. < EXACTLY word-for-word to some punk in a TRANSPLANT SUPPORT group on FB over his smart ass post.


WIMTS....

Look you little fucktard! You have NO IDEA what it is like for ANY of us, you little asshole punk. You are not a Recipient, nor are you a Donor or Donor Family. Who gives a flying monkey's ass if you are pissed over some emails that are sent GROUP-WIDE. Remove your sorry-ass self from the group and GROW THE FUCK UP!...FYI don't call on us in the event you need an organ or tissue transplant. With your smart ass attitude and "threats" I sure as hell don't want to give a single piece of myself to a piece of shit such as yourself.

Organ/Tissue Donation....Distorting the MYTHS. Stating the FACTS.

Organ Donation. It is one of the most selfless, heroic acts a person can do for their fellow man. It gives another person (or a number of people) a new lease on life. A second chance that would not have come otherwise.

Since it's founding and inception, Organ, Tissue, and Eye Donation have made great strides, and had come a long way where medical technology is concerned.

Too bad public education and awareness have neither made the same wonderful strides since that time. There are so many myths, half truths and all-out lies when it comes to the topic of Organ/Tissue/Eye Donation. Some are classics that you have heard so many times, it's like second nature and doesn't even phase you when you hear the words blurted out unexpectedly.

The number one myth/lie I tend to hear the most is... "If I have an accident or other tragic medical emergency, and I am a Registered Organ Donor, then the EMS and the Emergency Department/hospital will NOT do EVERYTHING in their power to save my life, so that they can get my organs".

How very, VERY untrue that this statement is. All medical professionals are to do EVERYTHING in their means and within their power to save lives. No matter if the patient is an organ donor, or not. 

Another is.. "They might take my 'parts' when I am still legally alive, but look like I am dead".

Yet, this is another false statement. The Transplant Coordination Team must do various, and rigorous tests, including several EEG's, eye dilation test, and nerve sensation testing. After all of those are completed (multiple times) and each time nothing changes with negative results for EVERY time, then the patient is declared BRAIN DEAD (which is a legal form of death), and also their only means of having a heartbeat and breathing lungs is via the ventilator.

There were comments on a Fan Page I belong in regards to the possibility of New York mandating an "Opt-Out" Organ Donation System, where you are of "presumed consent to donate", unless you sign a paper/check a box for your State-issued Driver's License or ID that you wish to NOT be an Organ Donor. Basically, it is donation in reverse. Instead of VOLUNTARILY giving your organs, you will be PRESUMED to be a donor, unless you say otherwise.

Some of the comments were either of a selfish nature, or of not enough self-education in to the ins and outs of donating.

There are some people that don't want to donate being that they would only want to have their "parts" go to 'good people', not "killers, rapists" and others deemed less fitting of society.

There was one comment where an ADULT female would only donate (including her heart) ONLY to children. Sadly to say though, an adult (for the most part) cannot donate their organs to a child. Especially the heart and the lungs.

The only adult organs that are able to be cross-matched with children (TO MY KNOWLEDGE) is heart valves, and the liver (that can be cut in to 7 or 8 pieces and will regenerate to full size in the host body), skin, and the corneas (window of the eye).

Otherwise, there is no feasible ability to transplant adult organs in to children. Not unless the recipient's chest wall, kidney areas are of a compatible size of their donors.

In all real honesty, the last two excuses/explanations I gave as to why people wish to NOT donate their organs after their death are the two most selfish. Yes, children (especially infants and other small children) are at the greatest need of transplants. And they have the highest rate of donor shortage. But I do NOT fault the parents of deceased children. It is hard enough to lose your child, only to have to make a DRASTIC decision like that, at such a critical, emotional and bereaved time such as that.

But unlike the latter, I don't see where, in my mind and personal opinion, that there is a valid excuse to NOT donate (other than for religious practice/belief reasons). Especially when you put a "price" on donating. Such as stipulating that you only want a "good person or people" to have your organs. Or that as an adult only wants to give to children, which will make what you CAN give, very little.

Speaking of "setting a price" on Organ Donation. That is another misconception I caught on that Fan Page board. Some one (who rides motorcycles) said that he wouldn't want to donate, being that the DONOR family gets dumped with the cost of procurement, transporting of the organs and tissues, and for the RECIPIENT's  surger(ies).

Again, a FALSE statement/myth/accusation. Nothing, and I mean *NOTHING* is charged to the Donor or their family for *any* part of the Transplant process. That all befalls to the RECIPIENT. Believe me, I know. Just for my cornea (not including harvesting, transportation, or transplantation) cost me $3,000.00. ME!....Not my donor or their family. It is against FEDERAL law to charge a single dime to the Donor or their loved ones being a donor or for the donation process.

So, I hope that for those of you that are still deciding to become an Organ/Tissue Donor, or for those of you that never really knew much about the process have read this and have taken something away (positive) about the TRUTH of being a Donor.

I truly believe that if more people were to self-educate (through reputable organizations, websites and through personal experiences of recipients) of exactly how Donation works, there would be MILLIONS more people willing to sign up to be a HERO.

My First Time.

Some say, when you have your first time, it can be really scary. You don't know what to expect, how to act or react. Or even what to feel at that very moment in time.

There are many firsts in our lives. First boyfriend or girlfriend. First dates and kisses. First time having sex. And then there is another first. One that thousands in the United States, and millions world wide get to have. Believe me, it is a first that no one wants to experience.

The loss of someone that for some people, they don't really even know on a "personal" level. But the shock, hurt, fear, and pain is still the same. Because in my exclusive club, when one hurts, we all hurt. When one rejoices, we all rejoice.

Sadly, there is no rejoicing for us in the Transplant Community in our Facebook tight-knit group, TEC. For one of our own is watching his wife dying before his very eyes. And there is NOTHING now that can be done for her.

She was in the process of testing to receive a Liver Transplant. She was even transferred to another hospital to start rehabilitation. But no sooner they got her there, she had to go back to her regular hospital and be placed in ICU. Sadly, she is now in Liver and Renal Failure. Her Kidneys have also basically shut down. Now, this vibrant, "young" woman is on full life support and around-the-clock dialysis.

Her family is coming in to say their good-bye's and at this point she is comfortable. By Monday, she will be taken off of life support and let nature take it's course, unless her heart stops before then.

This is a first for me. It is a stark, let alone grim reality of being in the Transplant World. None of us, be it Live Donors, Donor Families, or Recipients, I think honestly "get it" until something like this happens. We are in a "La La Land" of sorts. We all know that some get the call and are lucky. Some sadly don't. But until it REALLY "hits home" and happens to one of your own (so to speak), you can't honestly get a grasp on the severity of the realities of being in this (be it unwanted) exclusive club, where ALL ages are welcome, nor are they turned away. Transplantation has no age limits. Nor does Organ Failure.

Today, I await word on a friend's wife. He held out so much hope, gave her SO much love and devotion and was there for her from beginning to end, never wavering. He was giving positivity and hope to fellow new caregivers, even as he has had been getting his own heart shattering through seeing that there was nothing he could do but support and be there for the love of his life. And he is at this moment, by her side. Showing her his undying love, giving all the support he can as her soul-mate and just waiting for the end to sadly come.

We, his friends, have been loving them, supporting them and have hoped for the best. But sadly, the best came too late in the game. And for one woman, her journey through the Transplant Experience is almost over. Help was coming too late.

This "first" is something I will carry with me for years to come. And it's a "first" I knew would come along in my life. I just didn't think I would be blind sided with it this soon after becoming a Recipient myself. But I thank it for coming like it did. Why? Because now I can see the TRUE realities of the Transplant Community/World. It's not all a bed of sunshine, puppies and rainbows.

There is also darkness, heart break, sadness and death. In  this "club", lives are at stake. We have to depend on another person, be it that they are alive or have died, to keep US alive, seeing and going on with our own lives. And to be here for our loved ones. That's a hard pill to have to swallow.

Some one had to DIE to give me my sight back. Some people depended on someone's death to be their second chance for a new heart or a new set of lungs. It's not easy knowing this fact. In some ways, some of us (myself included) felt like we "took" or "stolen" from our donors, in a selfish manner. But that is NOT the case.

Our donors gave of themselves to help those that are in need of a second chance at living their lives and being with their loved ones. Without them, we either would not be able to see, walk or even be alive ourselves.

There is so much more of a Demand, than there is a Supply for people in need of a Transplant. Be it a heart, a kidney, lungs, cornea, skin, and many other organs, tissues and even blood. Please, if you have yet to do so, SIGN UP to be an Organ/Eye/Tissue Donor. Be a HERO and pay it forward. You never know when YOU may depend on someone else for a second chance for the Gift of Life.

April is for more than Easter. It's to Give Life, Give Hope....

Life. What a precious thing to have, isn't it? Most of us take it and all of it's gifts for granted. That is until something major happens and it makes you take a better look at that proverbial big picture.

That is how it is for over 100,000 people in the United States of America alone. Add in people all over the world, and you are looking at MILLIONS of men, women and children. Holding on to every single day as if it really is their last. Hoping for that one second chance.

Waiting for someone to give of themselves. Waiting....for a new organ, tissue, bone, or bone marrow.

Some will sadly die waiting for their turn. Some have been waiting only a few weeks. Some, a few months. And some have been forced to wait for YEARS to get "the call" to receive the Gift of Life.

During the entire month of April, those of us that have been touched by Organ/Tissue/Bone/Marrow Donation are celebrating Organ, Tissue Donation Awareness Month.

People that have been are a Recipient, a Living Donor, is a Donor Family, or a friend of someone who donated or received an organ/tissue/bone/marrow are banding together to spread the awareness of the need GLOBALLY, all around the world for people to SIGN UP 2 SAVE LIVES with their local Organ/Tissue Donation center.

Be it the Department of Motor Vehicles (DMV), on a website such as www.donatelife.net/CommitToDonation, or Google-ing for International Organ/Tissue Donation Registration websites.

When you sign up to be an Organ/Tissue Donor, you are saying that you are willing to freely give someone else, after your death, a second chance to live on.

For me, it was a Cornea for my eye. That is the "outside window" that protects your inner eye from injury and enviromental infections that could otherwise sneak in directly and attack the eye its self.

Without my Donor's gift of sight, I would be COMPLETELY blind in my left eye. As a Stay-At-Home-Mom that was NOT an option. I wanted to see with BOTH eyes, my three young children grow, be able to keep BOTH eyes on them, be able to SAFELY cross a busy street and have more of my independence back.

If you sign up to be a Donor, you are a HERO! To not only the Recipient. But, to their family and their loved ones. We ♥ our Donors and their families EVERY day. They are NEVER far from our thoughts, hearts, and appreciation.

Please, take a few minutes out of your time today to sign up to be an Organ/Tissue Donor. It's free, quick, and simple. Let someone have a full life and a second chance.

http://www.donatelife.net/    http://www.organdonor.gov/     http://www.unos.org/

    

Looking Up! (Update re: Cornea/Eye Appointment today)

Well, for the first time since my initial Corneal Transplant Surgery, something has finally gone RIGHT!

After looking at the eye and getting a good peek in to the back of it (for the first time), I got the all clear. My rejection REVERSED!!!!

For three tedious and daunting weeks, my Pred-Forte and I once again became closer friends than I care to admit to. Now I'm back down to four times a day on that, my Doxycycline (oral) medicine twice a day, and my lubricant drops as needed (usually no more than three times in a day).

What an improvement in just three weeks! And even better news?....

Even though he couldn't do it this time, being that I am just now getting out of rejection, I'm looking forward to finally getting SOME of the 15 stitches removed at next month's visit. He said that it's chancing it now to start removal. But when he does, it will be between 3 and 5 of them getting cut out.

If you are interested in this topic, please feel free to leave me QUESTIONS HERE in the comments area. I will try my best to answer them or at least find the info and their locations and work it all in to a separate post on the topic of Corneal Transplantation.

With my stitches loosening, it is now making the Cornea round like it should be, not flat like a table top. My peripheral vision is now back, thanks to the Cornea not being so tight against my pupil. The biggest nuisance now is the fact that my upper eyelid "sticks" to my eyeball. When it tries to "peel off", the air that got trapped releases and my eye "pops". It doesn't hurt. Just feels REALLY weird.

But at least now I can look UP! 

Come, join us at... The Transplant Experience Community (TEC) group on Facebook...

It's a safe haven. It is a place of support and understanding.

Thanks to Rex and Linda Maus, those of us that are facing a transplant, have had a transplant, were a Living Donor, or we are a family member of a Donor, have a place to run to. To call home.

That place is The Transplant Experience Community (TEC) group over on Facebook.

We have all various types of groups of transplant members there. Liver. Kidney. Bone. Heart. Lung. And even Cornea.

There are forum threads in the discussions area for each transplant group. There is a "Prayer Corner". We also provide a place to vent about the after affects of the surgeries.

As not only a member of this wonderful community....no, FAMILY, but as an Administrator in the group as well, I can personally say that I have never felt so close to "strangers" over a computer as I do with my fellow members in TEC.

We laugh together. We cry together. We share our hopes, our dreams, and our fears with one another. There is real love in the group. It illuminates all around within the group's walls.

If you or a loved one, be it a sister, brother, mother or father, a friend or co-worker is in need of a transplant, has had a transplant, or you wish to know more about Organ/Tissue Donation, please feel free to join us at The Transplant Experience Community. We are waiting for you with open and accepting arms.

The Transplant Experience TEC

It's Test Time For Me Today (Transplanted Problems)

Today is a test of faith, of self-perseverance, self-reflection and of courage. For me anyways.

In the last three weeks, I have been having to fight off rejection from my graft. The doctor had noticed a VERY early stage of it during the last appointment.

If the eye is still trying to give my Cornea the boot, then the BEST-case scenario is that I have to keep up the tedious task of dropping Pred-Forte in my eye several times (again) during the day. From the time I wake, until I go to bed.

WORST-case scenario? Honestly, I really don't think that I am even remotely to that point. But it would be to go and have another Transplant surgery done with a new donated Cornea.

With that all said, I am going to be bringing my "Transplant posts" back to my main blog (here at 'The (Not Always) Happy Homemaker Diary'). The blog for the Transplant Community isn't really getting any hits. So, I figured that this would be the best decision.

Sure, not everyone cares to know about the ins and outs of being a Donor, Donor Family, or a Recipient. But there are also many that do. So, being that my main blog (HERE!) gets the most "action", I will just keep those that are interested and/or following my progress (or lack thereof) updated on this page.

So, please know that I will update with the latest news as soon as I can. My appointment isn't until late this afternoon. Until then....

The Transplant Experience Community (TEC) group on Facebook...

It's a safe haven. It is a place of support and understanding.

Thanks to Rex and Linda Maus, those of us that are facing a transplant, have had a transplant, were a Living Donor, or we are a family member of a Donor, have a place to run to. To call home.

That place is The Transplant Experience Community (TEC) group over on Facebook.

We have all various types of groups of transplant members there. Liver. Kidney. Bone. Heart. Lung. And even Cornea.

There are forum threads in the discussions area for each transplant group. There is a "Prayer Corner". We also provide a place to vent about the after affects of the surgeries.

As not only a member of this wonderful community....no, FAMILY, but as an Administrator in the group as well, I can personally say that I have never felt so close to "strangers" over a computer as I do with my fellow members in TEC.

We laugh together. We cry together. We share our hopes, our dreams, and our fears with one another. There is real love in the group. It illuminates all around within the group's walls.

If you or a loved one, be it a sister, brother, mother or father, a friend or co-worker is in need of a transplant, has had a transplant, or you wish to know more about Organ/Tissue Donation, please feel free to join us at The Transplant Experience Community. We are waiting for you with open and accepting arms.

The Transplant Experience TEC