I’m Makin’ A List .. Checkin It Twice..

People make lists for all types of reasons. Grocery list. To-Do list. List of Goals. When you have CHD you get to make lists that most people don’t. Lists of questions for your doctors and surgeons. Lists of physical activities you must be exempt from. Lists of medications you are currently taking. Lists of previous surgeries. Lists, lists, lists!

As and adult CHD patient this will be my first time making two lists I have never made before.

The first thing I need to make a list for is all of the things I need to pack/purchase/gather/activities to complete for surgery. Reality has set in as my surgery and pre-op dates have been finalized. May 8th is pre-op and May 9th is surgery. I have a little over a month to gather all of the things I will need while in the hospital as well as business I need to finish before I am out of commission for an unknown amount of time. So far here is what I have on that list:

• PJ bottoms (pack)
• Shirts that button down the front (pack/purchase)
• Tank tops without a shelf bra to use as under shirts (to keep the girls down and the high beams off) (pack)
• Panties (pack)
• Slippers and slip free socks (pack)
• Flip Flops (pack)
• Toothbrush and Toothpaste (pack)
• Glasses (pack)
• Contacts (pack)
• Makeup (pack)
• Hairbrush (pack)
• Waterless Shampoo (purchase)
• Regular Shampoo and Conditioner (pack)
• Ponytail Holders (purchase)
• Blankets and sheets (blanket for me and blanket and sheets for Gabe’s pull out couch bed in my room)(pack)
• Pillows (pack)
• Chap stick (purchase)
• Kindle w/ charger (pack)
• Cell phone w/ charger (pack)
• Mom’s Laptop (pack)
• Xbox 360 w/ games and controllers (purchase)
• Notebook, Markers, & Pen (pack)
• Aspirin (meds for when I am released)(pack)
• Gabe’s medications..Insulin, Needles, Glucometer, Neurontin (pack)
• Call the social worker at my hospital to call Harboring Hearts charity to try to find housing for me to stay in for 2-4 weeks after hospital release
• Help my mother find a good hotel deal for her and my step-dad for 2 weeks
• Possibly buy a car the week before surgery depending on if/when my SSI and SSDI back pay gets sent to me
• Get the dog to the vet for checkup
• Send in my completed forms to the courts to officially file for my bankruptcy
• Turn in paperwork to the department of education to begin the process of loan discharge due to disability

As you can see this list is long and it is probably still incomplete. You might be saying that wanting to purchase an Xbox 360 is silly and ambitious and shouldn’t be on this list. Maybe you’re right. However, I don’t want to be bored in the hospital and I love playing video games. I fought the government for 2 years trying to get disability that I should have been given to begin with. This is my present to Gabe and myself for not giving up and for doing without any support of my own for 2 years. I am not one to spend frivolously but I believe I deserve at least one thing that I actually want vs. only things that I need. I do NEED a car and I am planning to purchase one. I do not know if my back pay will come in time for me to purchase one before surgery and if it doesn’t then that will have to wait. The dog NEEDS a check-up as it is getting warm out and we need to get some flea and tick as well as heart worm prevention medication for him.

Surgery will be held at Phoenix Children’s Hospital and I will be staying in the CVICU the entire time. It is a very nice facility and family oriented. They tell me there are no “visiting hours” and families are encouraged to be present the entire time to boost recovery. They have a pull out couch bed in my room as well as a family center that houses full size washers and dryers, free flavored cappuccino machines, showers stocked with towels and toiletries, phone and business center, as well as a fully stocked kitchen in which families can make home cooked meals. If you would like to take a virtual tour to see my accommodations click HERE and then click on the 5th floor.

The other list I am compiling is a list of my wishes should something unexpected occur and result in my death. I don’t consider this morbid because in reality something could go wrong and if I am not able to tell someone what I want and I have no living will then my family will have to bear the burden of deciding what should and should not be done to and for me. I really don’t know exactly what is all going to be on this list but it is on my mind. I do know that I want to be buried and not cremated although I am undecided as to where I would want my finally resting place to be. I also know that I do not want to be kept alive should my brain be dead and my body become a vegetable. That is no way to live and someone else would surely benefit from receiving my healthy organs. Of course I do not expect any of these things will need to be enacted but I do need to prepare.

In other news… I have been contacted by Congressman Gosar’s PR department. I was informed that after my blog had been re-tweeted on their Twitter page they were contacted by two reporters who want to talk with me. One of the reporters is from the Arizona Republic and would like to do a piece on how I used social media to gain the attention of the Congressman and others to help with my SSDI case. The other reporter is from the University of Arizona school of journalism who would like to do an on camera interview with myself and the congressman. U of A want to do a piece on my entire experience with SSDI. I have been warned by several people that I should or shouldn’t talk about this or that because it can be used against me later. I am not sure what exactly they will ask but I am going to try to be as honest as possible without screwing myself.

I re-read my SSDI award letter last night and had a mini panic attack. The VERY last line of the letter at the VERY bottom of the page states “The claimant is expected to medically improve after treatment including heart surgery. This case will be reviewed in 12 months to re-evaluate the need for SSDI.” I’m sorry but first of all.. the recovery time for this surgery alone is 12 months AT LEAST. Second of all, did they not read the part where in my case it said this is a LIFE LONG condition and my prognosis will NOT improve? My heart isn’t going to magically regenerate the half of it that is missing/no longer works. The doctors say although my blood flow will be better that I will probably always be symptomatic. Then my mind wanders and thinks if my SSDI did ever get taken from me what would happen in the future when the doctors tell me I need a transplant? Will I have to re-apply and wait another 2 years and possibly die AGAIN? I understand that this is probably standard procedure but at the same time there are things that should just be automatic. People with missing pieces of organs, people with chronic illness, people with traumatic brain injury… all of these people should receive SSDI automatically and that should be the end of it. Let me tell you all something. Those people, like me, with a chronic medical illness ARE NOT PROUD TO HAVE TO BE USING THE SYSTEM. Do you know how painful it is to admit you cannot complete the most simple of tasks due to your condition or what harm the time you spent doing those things will cause you later? It’s embarrassing to say the least. I think being subjected to reviews every year or two from the government when you have a REAL disability is asinine.

I will end this blog on a positive note. As many of you might guess I am sinfully addicted to reality TV. I was watching a show on MTV called Battle of the EXes when one of the contestants started talking about a foundation she created. Diem Brown was diagnosed in her early 20′s with cancer. When she was ill she could barely afford her medical bills, let alone the cost of a real hair wig. Not being able to purchase one was devastating and as a result the idea for MedGift.com was born.

MedGift.com is a website in which patients in medical crisis can interact social networking style as well as create a registry much like anyone would for a bridal or baby registry. Patients can ask for make lists pertaining to their needs, wants and wishes, keep an online record of their physical medical record, as well as keep supporters updated on their progress. Any patient can create a profile on the site and use it’s social networking capabilities as well as the wish list. Patients can only edit the needs and wants lists if their hospital is a participating provider. Hospitals who are participants in this program give their patients the options of creating a registry for medical needs for anything from medical equipment to monetary donations towards a patients hospital bills. The site is very secure and has privacy settings so you can choose who sees what concerning your medical status. This site is phenomenal and should be in ever hospital in America! I cannot tell you how many CHD families would benefit from using a site like this to keep their families informed and gain support from family members who are unable to be present for major procedures. My hospital is not yet affiliated but I am using the site for it’s social networking capabilities and wishes list. If you visit the site and think it is as awesome as I think it is you can contact Relay Health with contact information for your hospital as a lead for them to follow so your hospital can become a MedGift affiliate. To contact Relay Health about your hospital you can send an email to RelayHealth@RelayHealth.com

 

 

 

 

 

 

EXTRA! EXTRA! READ ALL ABOUT IT!

It has been 6 months since my last entry. I have been a busy bee and have neglected my CHD blog but am back at it. I have spent the last 6 months going through several changes and this post is going to be chock full of updates.

1. Disability Application Status – After being denied by the SSA twice, I was on my third and final appeal as of September. I hired a lawyer and provided more than enough evidence to the SSA to be granted Disability. Here are the highlights as to why I do not feel my case should have ever gotten to a third appeal because of the evidence presented before the second denial:

• In December of 2010 my doctor reported after a cardiac catheterization that I had chronic Atrial Flutter and a severely enlarged right atrium. The doctors described it to be the size of a grapefruit.
• My doctor wrote the SSA a letter in July of 2011 stating that I was in NYHA Class III heart failure and needed surgical correction to live.
• My doctor filled out a cardiac questionnaire and stated that I was only able to work continuously for 1 hour before needing a rest period of 3 hours due to my current condition. He also stated that I would likely miss work at least 3 times per month as a result of impairment or treatment of my condition. The doctor stated this had been true as of January of 2011, if not earlier.
• My condition, Tricuspid Atresia, was added to the Compassionate Conditions list of SSDI in July of 2011. Although I feel this addition was to appease the ACHA, Adult Congenital Heart Association, and make them feel like they are making a difference. Turns out, the addition of TA to the Compassionate Conditions list does not automatically deem your disability as granted. All it does is move your case to the front of the line when you apply THE FIRST TIME. If they deny you, you are in the same boat with every other applicant.

I was told after I retained legal council that I would have to wait 12-14 months to be given a court date but that it would probably take 5 months or less. In December I received a letter stating that my case had been forwarded to a Virtual Screening Unit. The VSU is a group of medical and law experts hired by the SSA to approve cases they feel have enough evidence to be approved without going to trial. I thought “YES! it will definitely be approved.” WRONG! I received a call from my lawyers in late January advising me that the VSU stated the evidence was not enough to approve me and that I would indeed have to go to trial. I was in utter shock and disbelief.  I was at a loss as to what to do. In the mean time I had a doctor appointment with my cardio on Feb 13th. I had an echocardiogram and EKG to check on my condition. My doctor said that my condition was the same and that my atrium was a few centimeters larger than it was previously indicating that I am slowly getting worse. I nicknamed my doctor Smiley because no matter what he says he still smiles from ear to ear. Not this day. He asked if my disability had been approved so we could move forward with surgery. I told him no, I am still waiting for a hearing date and that the VSU had turned me down. His exact words were “I have already told them you are in heart failure. What else do they need to know? I just don’t know what more I can tell them for them to understand the urgency in this.” For the first time Dr. Smiley was showing signs of anger and frustration. Things I have been feeling for almost 2 years battling the government.

After talking with my father and telling him what all happened he said I should contact Sen. Kyl like I had done the previous year and my mother concurred. I did as they suggested and contacted the Senator. In response I received a letter stating “Due to my retirement next January I am unable to fulfill your request.”  I interpreted that as “Since I am not running for re-election and don’t need your votes, I really could care less.” I was distraught and lost. I felt like I could not get the attention of anyone. I set out to be heard, after all, the squeaky wheel gets the grease. My family was extremely helpful. My cousin Mary and I wrote every news outlet and talk show we could think to write to hoping SOMEONE, ANYONE would take interest. I decided to also write my local congressman, Rep Paul Gosar. My cousin, Karen, saw that I had written him a letter and decided to shout to him on Twitter. Low and behold she is a genius and it worked! He instructed her to tell me to call his office so they could work on it right away. I called the office and Rep Gosar’s office manager Jim said he would be handling my case and to send over an information release. I did so immediately and they inquired right away. Jim e-mailed me two days later stating that I was in queue to get a hearing date and unfortunately that process took 12-14 months. I pleaded with him through e-mail and told him my condition is urgent and that I did not have another year to wait for a hearing. I need surgery ASAP and have needed it for almost 2 years now. He inquired with the SSA again and assured me the case was being expedited. A few days later my step dad called and told my mom we received a strange letter in the mail. The SSA had sent me a letter with my name and address on the envelope but inside was a letter addressed to Sen John McCain regarding someone else’s disability case complete with her name, address and social security number. I panicked. Had they been trying to send me something and mixed up our letters? The next morning I called Jim and explained to him what had happened. He confirmed that they had indeed been trying to send me a copy of the letter he received that morning stating that I was in queue for a hearing and the case was being expedited. I explained that this angered me and made me feel very violated because my personal information, case details and social security number were in some strangers hands who could easily steal my identity.  He asked if I could e-mail a copy of the letter and envelope to him so he could approach the SSA with the situation. Later that afternoon my phone rang and my lawyer was on the other end “Christina, we have some really exciting news for you. You’re case has been fully approved by the SSA ODD!”. I didn’t speak. I was stunned. After a minute or two I asked her to repeat that because I was sure I heard her wrong. I wasn’t wrong, it was over, I finally had won. I danced around and high fived my boyfriend and called everyone in my family as well as posted on Facebook. I still believe the only reason my case was approved without going to trial was because the SSA screwed up and leaked my information and were afraid of a law suit, which I am still contemplating. Much later that afternoon I received an e-mail from Jim confirming that they had made a decision but he was unable to disclose it through e-mail until an official letter was sent by the SSA. The SSA office that switched the letters called me that day as well apologizing for what had happened and assured me that they contacted the woman they sent my information to instructing her to mark the letter return to sender when she received it. The SSA was supposed to call me when they received the letter back in there office and two weeks later I still have not heard from them. My hero’s in this situation are Rep Gosar and his team for taking an interest and helping me in the fastest manner I have witnessed in regard to the SSA. I will be forever grateful and will be voting for him in ANY election EVER! If you are in Arizona and in his district you should know he does his job well and actually gives a damn! It will still be a few months before I receive all of my back pay but I am set to receive my first SSDI payment next month. I also qualified for SSI for the 5 months that SSDI will not cover. This means that I also qualified to have Medicaid the entire time I was fighting disability and they will be paying ANY and ALL medical bills that I have incurred in that time. It’s been a long and tiring battle but it’s done and over and I am the victor. Persistence is key.

As a result of my battle with the SSA I have started a petition on Change.org in hopes that the SSA will make it so that adults with complex CHD will be automatically approved for SSDI to avoid getting worse during their battle and taking years to be approved for SSDI. You can sign it here: Approve Disability Claims For Adults W/ Complex Congenital Heart Defects

2. Heart Status – Things remain generally the same for me at the moment. Still in NYHA Class III heart failure, chronic atrial flutter and a severely enlarged right atrium. I will soon be facing OHS in a few months. I will be having three procedures in one, a Fontan Conversion to Extra Cardiac Conduit/Cox-Maze/Pacemaker placement. I am very nervous but trying to remain positive and talking with others that have already had this procedure and are doing well is helping. I have my surgical consult on Wed March 21st. I will meet my lead surgeon, Dr. John Nigro, who is also the director of congenital cardiac surgery at both Phoenix Children’s Hospital and St. Joseph’s Adult Congenital Center. Dr. Nigro will be telling me everything that will happen during the surgery and I will get to ask him my list of questions. I think this surgery has been more mentally terrifying for me than any other procedure that I have had to endure. When I was a child and had to have surgery I had no idea how serious it was and the impact that it would have. I just knew I was in the hospital and that I was only going to eat Goldfish and Cheeze Balls because hospital food was gross. If you are a parent of a CHD patient and wondering how the questions asked to a surgeon will change with adult hood… here is my list for Wed:

• What Pre-Op testing is required before surgery?
• What is the mortality rate of this surgery and has anyone here ever passed during complications from this surgery?
• What is my risk for stroke and thromboembolis?
• How many hours does the actual surgery take, one average?
• How many blood transfusions will I have to have?
• How long will I be sedated and on a respirator?
• Will I have to have a feeding tube?
• Will I have to have a colostomy bag?
• Will my incision be sutured or just glued?
• How long will I be in ICU and how long will I stay in a regular room?
• What medications are “standard” after this type of procedure and for how long?
• Will I have a home health nurse checking on me once I am released to go home?
• When can I return to normal activity and when should I start trying to exercise (walking, attempting stairs)?
• When can I have sex again? (don’t laugh, it’s a valid question and an important one to me! LOL)

I am still adding to this list and I will be writing a blog entry about everything the surgeon told me once I return home.

3. Mental Status – Some days I am fine and some days I am a basket case. I have a lot on my plate at the moment and at times it can be overwhelming. Like I have said before, open heart surgery is more mentally terrifying as an adult than it ever was as a child because I am old enough to realize exactly what is going to happen and all the things that could go wrong.

I am taking steps to help myself in this area. I recently started seeing a psychologist who also has an R.N. I want to be able to talk to someone outside of those that know me to get an objective opinion and gain some better coping skills. After my initial appointment the therapist told me I would need to go at least 2 times per month until surgery. After surgery and I become mobile I will still need at least a session per month to help with the recovery process. I am totally cool with all of this. My main therapy goal is to be confident and positive on the day of surgery instead of being a fearful ball of nerves crying and shaking.

I also set out to find support within the CHD community. I have found a great few friends that are just like me and are very inspirational people. To my ACHD friends Jennifer Watucki, Jessi Goffard,  Jenn Constantino and Ryan Wilcox – you guys rock and make me feel like this surgery will be a piece of cake and well worth the initial pain and hallucinations. LOL!

I am also currently in a Facebook group called Adult CHD Patients Answering Parent Questions. I think this is very therapeutic for me. I love helping other people and feel great knowing that someone else is finding comfort and positive reinforcement in me and my experiences with their own CHD struggle.

It’s not sunshine and roses but it’s as positive as I can make it at any given time.

4. Relationship Status – my boyfriend, Gabe, and I recently moved in together as of January. For those of you who do not know, Gabe is an uncontrolled Type 1 Diabetic (this is his actual diagnosis from his endocrinologist) that is on disability like me. Although he has Type 1 he was not diagnosed until he was 21. He has been in the hospital for DKA (diabetic ketoacedosis) more times than he can count. His last episode of illness was in October of 2011. He had a virus and was hospitalized for 3 days because of dehydration. That was the first time in a year he had to go to the hospital and has been doing well since.

He had his first Endocrinology appointment with his new Dr. the same day I had my last check-up, February 13th. Dr. Alamir is very thorough and knowledgable. Gabe liked him and so did I. Right now Gabe has been instructed to attend a nutrition class, a class on insulin pumps, and to have CGM (continuous glucose monitor). We are working these things in as we can. Our doctors are 3 hours away in Phoenix and until we get a car we have to schedule our appointments on the same day around my mom’s schedule.

He has been doing fairly well with his sugar levels since moving here. He still has high sugar here and there but we are forming better eating habits together. He still snacks all the time but is showing some improvement in his food choices choosing to eat healthier snacks instead of just junk (I am so guilty of eating junk too!). We are also learning to cook tasty meals that are low in carbs and that have no sugar. There is never a dull moment with us. Although we each have only one impairment we both live like we have two; me with diabetes and CHD and him with CHD and diabetes. You would think that having impairing health issues would be cause for a lot of frustration and arguments and at times we do snap on each other. However, for the most part we like that each of us has a medical impairment because it’s something we can relate to with each other immensely and really limits the amount of arguments due to crankiness from a medical issue because each of you actually KNOW what it’s like to be frustrated because you feel like shit due to something you have little control over.

It’s not perfect but it’s perfect for us.

That concludes the big update. I have a few other subjects I will be blogging about very soon and be on the lookout for the surgical consult blog if you want to stay up to date with my trip down the road that is OHS!

Hollywood Fairytale or Modern Day Horror?

In today’s pop culture cinematic adventures the good guys always win, the bad guys always lose and true love is always whimsical. We watch these films time and again to escape from reality. In the real world good guys always get trampled or screwed over, bad guys always get let off the hook and true love is a far cry from lavish vacations and dramatic adventures.

Everyone finds their escape from reality through different avenues. For me, it’s writing, reading, film, television and role-playing games that allow me to lose myself in any other reality than the one that is my existence. I read vampire novels and imagine I am immortal and have supernatural powers. I paint to depict emotions that cannot be expressed through words. I watch films and pretend I have no financial worries. I play a role playing game because the characters I create embody all the traits I would like to have. If you read this and think this doesn’t apply to you, think again. Everyone does something to escape, if only for a few moments a day even if it is just imagining you are somewhere else or are someone else.

Reality is more of a horror story than anything hollywood executives ever dreamed of filming. September 11, 2001 is proof of such a statement. Thousands of people dying for no reason is scarier than the creepy guy that lurks under the stairs. If you want to talk scary, how about the children who now have to grow up without parents because of September 11th? Or perhaps the threat that another terrorist attack will strike America in the near future because our government and the UN want to be fair and let everyone have nuclear bombs? That is scary.

Horrifying is the fact that you have to take a class and pass a test to drive but anyone can have children. Access to government programs restricted to those who can work the system or are just lazy is cruel.  Having half a heart and being deemed “in heart failure” and being denied help from your government is traumatizing. Socialistic medicine congressional bills that allow the old and sick to die rather than receive quality and unbiased healthcare could be right around the corner which is unimaginable. Maybe screen writers and authors should take a peek into modern-day society before they write their next suspense filled movie or book.

There are many people in America that desperately need help from disability, I am just one. Time and again I see other people who do not need disability being accepted for things that can be treated and allow them to resume being productive members of society. I cannot grow my heart muscle back and more of it needs to be taken out soon. People with ADD or ADHD can be medicated and alcoholics can go to rehab. Our government believes my physical issue is not in need of disability assistance and that these people are entitled to disability. These people also receive disability faster and the why part of this equation I still don’t understand. If you are down on your luck or have a disability and need government assistance then, by all means, please apply. If you are able-bodied and choose to exhaust your resources on extravagances such as tattoos, trips to the mall and/or vacations then save us all a headache and get another job instead of using tax dollars to help you use your money to enhance your life with trivial crap. If you are starving and go on food stamps then there is no need for you to be getting tattoos. If that is the case then you need to get off food stamps and buy your ass some groceries instead of paying for pretty body art that you will probably regret later anyways. There is no reason for such idiocies if you are a healthy individual who is capable of increasing your income by getting off your ass.

So here is the question to you, do you live in a Hollywood Fairytale or a Modern Day Horror?

The Big Ditch, Denials, and Drama

It’s been a while since I have sat down to write. A lot has been going on the past month and a half and I am just now getting the chance to put my collective thoughts down on internet paper. The past month and a half has been an emotional roller coaster to say the least. I’ve had some high high’s and some low low’s. Let’s review..

From July 15th through August 15th my boyfriend, who lives in Florida, got to come to Arizona and spend a month with me and my parents. I can honestly say it was the least stressful “meet the parents” scenario I have been through. For the first time in my life I am dating someone I know my parents would approve of. We all had a great time during his visit. Most of the time he was here we didn’t do a lot but hang out at my house but my parents did take us to the Grand Canyon. Neither of us had ever been to see the biggest ditch in the world so it was a new and breathtaking experience for us both. As I stood looking at the canyon I couldn’t help but think about just how small I really am. If you have never been to see the Grand Canyon, put it on your bucket list as a must see before you exit this plane of consciousness, it will definitely open your eyes. During his visit my parents also took us to a little mining town that had tons of antique shops. It was really cool to see all the treasures in the stores. Yes, some of it was just old junk but there was also some really old pieces that you could see the history in. Eventually, it was time for my boyfriend to leave and that always has me pretty bummed for at least two days after he leaves. I miss him when he isn’t around because we just get each other, it’s strange but awesome. Next it’s my turn to visit him. I am going to his house the end of October and staying until the beginning of January and from there I think he will be flying home with me. It’s a blessing and a curse to have nothing but time when you have to be stuck on disability.

I sent in my appeal to disability and my condition, Tricuspid Atresia, was placed on what is called a Comfort Allowance list. This list basically states that your condition warrants the SSA to expedite your case and that if you meet the criteria according to the SSA you qualify for disability. This list only has about 100 conditions and only two types of cancer. I thought this was fantastic because there is no way they can deny me being that my condition is now on this list. Wrong. I got denied by them again as of yesterday. I already have lawyers working on my case and you probably know them, Binder and Binder. My boyfriend used them for his disability case for his Diabetes and they won his case. I hope they can do the same thing for me. I have spent most of the morning filling out their paperwork. The good news is even though I have to fill out their paperwork, they are going to file this next appeal for me and get my court date. I was actually surprised at how angry and depressed I was when I got the news yesterday. I had prepared myself that they probably weren’t going to approve my claim this time and that I would have to get a lawyer.

Although I thought I prepared myself I was still so mad I wanted to punch someone, anyone, in the face. Instead I chose to sleep it off. Here are my emotional qualms with this “process”:

A. I need a surgery that I cannot have preformed until I get disability. I need the insurance. My doctors say I “should be OK” until then but they don’t know that for sure. At the first scan last year of my right atrium they told me it was slightly enlarged but that it wasn’t something to worry about. A month later I had a cat scan on my heart in which they came back and determined that the right atrium is actually the size of a grapefruit and that it is a problem. See why I don’t exactly trust their statements? The truth is they have no idea how long this is going hold up on it’s own and it could stop working anytime between now and then.

B. I have no money of my own. Everything, besides food which I receive food stamps for, I have or am able to do is dependant on other people. I have no pride and hardly a self esteem at all because I used to be an extremely independent person and now I can’t do anything without the help of others. I can’t even go to the store until my mom gets home from work because I don’t have the money to get a car or pay for insurance. I feel like I am a mooch and that it isn’t fair to the people that are constantly paying my way.

C. At some point I would like to live a life to some extent again. My boyfriend and I plan to move in together once my surgery is over. The timeline on that just got pushed way back. Someday I would like to have a baby because, let’s face it, I’m almost 28 and not getting any younger. I know you all reading this think I’m out of my mind because of my heart condition but the doctor actually said that after my surgery I would be physically alright to try to have a baby. He said most of the people with my condition he has seen in pregnancy thrive. The more fluid that is in my system is better for my blood flow and since you retain a lot of fluid during pregnancy that I would probably feel more like a normal healthy person than I do now. It will still be high risk and not without complication but it is possible.

In my adventures I have also been involved in some pretty ugly family drama involving my uncle and cousins. Me, being that I have a low bullshit tolerance since all that has happened to me the past year or so, decided enough was enough and that I had to speak my peace. I did and have no regrets about it. Through everything I have learned it’s important to stand up for what you believe in and the people that mean the most to you. It’s funny how the family members I thought were the most harsh to me growing up are the ones I appreciate most and that I go to bat for now. I have come to understand that back then I mistook brutal and blunt honesty for harshness for no reason. No one is perfect but my uncle has always been there for me even when I needed to hear what a bitch I was being or that I was totally wrong in my words and actions. Maybe it’s just part of growing up in a southern family that we feel it’s fine for us to tell each other when we are being idiots but not when others do it. I am all about if you don’t have anything nice to say don’t say anything at all, however, I only believe that applies when it is unprovoked. I don’t believe it is acceptable to go around spouting off at the mouth about whatever you want because you are hurting so you feel the need to make others feel like pond scum. Just know, if you intend to speak your mind be ready for others to retort. Yes, if you want to hurt people I love and care about and I see it, I’m going to say something. It doesn’t mean I love you any less, it means you are wrong in your choice to show blatant disrespect and you are going to be called on it. Age is not a factor in disrespect and is not something I will take into consideration when you are being a moron and need to be told so.

I will end this entry with a positive. I got a new book two days ago and only have a chapter or so left to read. My mom bought me “Bloodlines” which is the sequel to “Vampire Academy” by Richelle Mead. I have to say I love it, love it, love it! Books help me emerse myself into a different world and forget about mine for a while. This book is a must read for fans of Richelle Mead or supernatural fiction. Why are you still sitting there? Go to Wal Mart right now and start reading!!

Child Abuse and Neglect are NOT a Relative Term

In light of the verdict handed down by the jury of the Casey Anthony trial I have decided to tackle a topic that affects everyone. Child abuse. Casey Anthony did an excellent job of creating enough illusions with her lies to stall her child and any physical evidence from being found as well as uncovering the truth. I am again saddened by another function of our U.S. government, the non-judicial system. Casey Anthony was indicted on 7 charges. The verdict was not guilty on the counts of murder in the first degree, aggravated manslaughter and aggravated child abuse. Anthony was only found guilty on the 4 lesser charges of lying to the police. Murder in the first degree requires that the state prove the crime was premeditated. In my opinion, the mountain of circumstantial evidence the prosecution presented did not prove the crime was premeditated. However, I hoped she would be convicted of manslaughter and had NO doubt she would receive a guilty verdict of aggravated child abuse hands down. But no, the jury of 12 found her not guilty on all counts.

Child Abuse is defined as: the physical or emotional or sexual mistreatment or neglect of children.

In light of proving the child was left in the mother’s car while she partied was enough to convince me without hearing of chloroform being involved. The chloroform just adds to the horror of the situation. Let’s also not forget that she DID NOT report her CHILD missing for 31 days while she continued to party on an island. Isn’t that considered neglectful??

Unfortunately for Caylee and other children this is their daily life, having a parent/guardian who is abusive or neglectful.

The incidence of child abuse is high in America. The even scarier fact? The occurence of abuse is 4 to 10 times higher in children who suffer from a physical or mental disability. The numbers are rattling. Over 33% of ALL children with disabilities are abused or neglected by their parents and/or caregivers at some point in their childhood.

Children with disabilities are more vulnerable to abuse for many reasons:

• Their inability to see, hear, move, communicate, dress, toilet or bathe themselves independently makes them vulnerable to rough, careless or intrusive personal care, or neglect of their personal needs.
• These differences also make them vulnerable to unfair and disrespectful comparisons with siblings or other children of the same age. Needing help to do things others can do independently makes them vulnerable to low self-esteem – a major risk factor for abuse.
• Their differences may make it difficult for them to participate in family and community activities without assistance, leading to social isolation from their natural peer group and adults other than their primary caregiver(s). Isolation is another major risk factor for abuse.
• Their differences make it more likely that their personal care and even their residence will be provided by people who are not related to them, and/or who lack an affective relationship with them.Being cared for outside the home is another major risk factor for abuse.
• Children with intellectual or communication differences are vulnerable to being ignored, disbelieved or misunderstood if they attempt to report abuse.
• Parents/caregivers of a disabled child may feel very much on their own. They may be stressed by ongoing health care needs, difficulties in finding suitable child care, financial burdens and social isolation, along with related difficulties such as depression and marital discord. Although the role of stress in triggering or causing abuse of children with disabilities is still controversial, studies indicate that caregivers who perceive themselves as severely stressed are more likely to commit abuse.
• -   Children with disabilities are more likely to be viewed in terms of their disability. This places severe limits on a child’s sense of his or her own capabilities, interests and ability to dream and imagine future possibilities. Being depersonalized in this way makes a child vulnerable to some of the most severe forms of abuse, including homicide.9
• Children with disabilities are often taught to be compliant with adults, especially at the doctor’s or therapist’s office or clinic. Compliance for intrusive or painful procedures that a child would naturally resist may sometimes be obtained through force, coercion or bribery. As a result, it becomes very difficult for a child to distinguish between legitimate and abusive adult demands.
• Myths abound regarding the sexuality of people with disabilities. People with disabilities are presumed to not have sexual feelings and desires like everyone else or, conversely, to be “over-sexed.” Children with disabilities, particularly intellectual disabilities, are presumed to not understand anything at all about their bodies, or to be “precocious” about sex. These myths place children at significantly increased risk of sexual abuse.
• Children with disabilities may have reduced opportunity to set their own personal boundaries. For example, caregivers of either sex may have responsibility for undressing or bathing a child, regardless of the child’s chronological age or level of development.

Child abuse and/or neglect may come from more numerous sources than that of a healthy child. It is everyone’s responsibility to report abuse or neglect of any kind. There are many routes to help in the prevention of child abuse for those who have children with disabilities.

• Children with disabilities, like all children, need training in safety, self-protection, healthy sexuality and assertiveness. Children need to know that they have a right to protect themselves and a right to tell an adult if they are not being protected or if their needs are not being met. Children need to understand clearly that they deserve to be treated with respect in every situation – at home, at school, in hospitals or treatment centres, in their social environments, etc.
• Parents and others who contribute to a child’s care may need education and support, including special training relevant to a child’s particular physical, sensory or intellectual needs.
• Parents/caregivers may also need education regarding the potential risks and signs of abuse. Their child may be at an increased risk of abuse from caregivers and others in the community. Learning to listen to a child is always important, especially if a child has a communication or intellectual disability. Children may communicate about abuse in indirect ways – through regressive behaviours, resistance, or angry “acting out” behaviour. Punishment for these behaviours is inappropriate and counter-productive.
• Parents must also be very careful about choosing caregivers – and about observing their child’s response to these individuals. As well, parents can ask questions to assess the openness of professionals and care facilities to their ongoing involvement in their child’s care and development.
• Professionals need to “unlearn” old myths that may negatively affect their attitudes toward children with disabilities and/or their families. Children with disabilities must be seen as individuals first, not as “diagnoses.”
• Medical professionals need to take sufficient time and care to explain procedures and listen to objections, to ensure that the child’s cooperation reflects a genuine level of informed consent.
• -People working with children and families need to improve their ability to detect child abuse and neglect and to improve mechanisms for alerting authorities to intervene.
• Our broader society must take responsibility for providing adequate support to families so that they can meet the needs of children who have disabilities. Because a disability often entails extraordinary expenses from birth and throughout life, resources must be made available so that families can access the qualified and reliable services and equipment they need – services such as respite care; equipment and medications needed for health, mobility, seeing, hearing and learning; as well as sensitive and responsive social services.

Please, if you know of a child being abused, report it as soon as you are aware. Do not allow another person to get away with abuse and neglect as Casey Anthony has proved the longer you wait, the less physical evidence can be collected. Children often do not have a voice and need someone to advocate for them. In the case of disabled children, they are at an even greater disadvantage as they not only require all the attention as a heathy child but require special care as well.

Hopefully tomorrow will be a better day and a child murder case will not be the topic of the television. Hopefully tomorrow someone will be served REAL justice.