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

My mother, step-father, Gabe and I met with my surgeon, Dr. Nigro,to discuss anything and everything about possible surgery. Dr. Nigro reviewed my anatomy and current heart health status with everyone and from there gave us 3 options. One, I can opt not to have surgery and regulate myself with medications which have already proved to be inadequate at controlling my rhythm issues. Two, I can opt to wait until my condition worsens to the point at which I can no longer wait and will die without immediate intervention. Lastly, I can have surgery now. Option one is out because medication has proven ineffective with me and has a good chance of destroying my liver and/or thyroid in the process. Option two is out because the longer I wait the worse my physical condition will become and the higher risk I will be as a surgical candidate. That only leaves option 3, operate now.

After reviewing all of this information Dr. Nigro invited us to ask any and all questions we may have. Here is the official list of Q&A between Dr. Nigro and I.

Q: What pre-op testing will be required of me before surgery? Is a heart cath going to be necessary?

A: Since having a cath only a year and a few months ago a cath is not required. I will be required to be subject to standard pre-op testing to include blood work. The team will conference one more time before surgery to ensure the game plan and if there is a piece of information they are missing they will contact me and let me know what they need me to do.

Q: What is the mortality rate for me specifically?

A: Mortality rate for this surgery is determined individually by how good your circulatory plumbing and ventricular function are at the time of surgery. My plumbing is excellent and so is my ventricular function as it is my atrium that is seriously in need of repair. My risk for death is 2-5% which may sound scary but at the time I had my first Fontan in 1986 the mortality rate for that procedure was 10-20%. The surgery is not risk free but is rather low risk. Complications can occur but things like thromboembolis and stroke during surgery are the exception rather than the rule. The most common complications and things that will be monitored closely are infection to the surgical site as well as fluid build up.

Q: How long does the actual surgical procedure take on average?

A: On average the surgery takes 4-6 hours with no complications. It can take longer but the aim is 4-6 hours.

Q: Will I have a permanent pacemaker put in place?

A: Dr. Nigro said they would be leaving pacing leads inside in case the need arose for me to have a permanent pacer. He explained that the pacer is computerized and smart enough to know when it does and does not need to be on. I told him that in that case I want the pacer put in during surgery. If I don’t need it great, it will just stay turned off but that I would rather have it there and not need it than to have to get cut open again to put it in place if I do need it. He agreed and will be putting a permanent pacer in.

Q: Will I have blood transfusions in recovery?

A: I will need several transfusions during surgery and probably one or two in ICU. There is risk of transfusion reaction but again, that is rare in this day in age.

Q: How long will I need to be on a respirator?

A: After surgery the ultimate goal would be to be off the respirator within the first few hours. Typically patients are off of the respirator within a few hours to 2 days of exiting the procedure.

Q: Will I have a feeding tube or colostomy bag?

A: No need for either of those but I will have to have a urinary catheter.

Q: Is there a possibility that my breasts won’t be the same as they are now? (I don’t want my girls lopsided or be a candidate for the nickname Biggie Smalls)

A: Dr. Nigro seemed shocked and laughed and said that my breasts will be just the same as before.

Q: Will the incision be sutured on the outside? Glued? How will that work?

A: Disolvable sutures will placed internally and there will be nothing on the outside holding the skin together.

Q: How long will I be in ICU/regular room (i.e. what is the average length of stay)?

A: Definitely two weeks minimum but four weeks is not unreasonable for an expectation either. My length of stay will depend on my progress. Dr. Nigro is concerned that I live in 2200 and 7700 feet elevation and has advised that I stay in Phoenix for at least 2 weeks after my release from the hospital. I have no idea what I will do for this as I am not sure if I can afford an extended stay hotel or to rent a house for a month. This is still up for debate and will be discussed with my cardiologist, Dr. Rhee, as well.

Q: What medications are patients that have this procedure typically expected to be on after release from the hospital?

A: Three medications will be prescribed with almost certainty and others may be added on depending on what my body does. Upon release I will be on Lasix, Enalipril, and Coumadin. Lasix is a water pill to make sure I keep fluid off of my heart and lungs. Enalipril is a blood pressure medication to make sure that my heart does not work to hard. Coumadin is a blood thinner that will be given for a short time to ensure I do not develop any clots.

Q: Will I have to have a home health care nurse after going home and for how long?

A: It is not unreasonable to have home health care for a short time after surgery. A nurse will come by to check my surgical site and take my vitals. This is to ensure there is no infection and that I do not develop any complications that I may be unaware of.

Q: When will I be able to resume normal activity and have sex again?

A: I will be able to resume activity in 2-6 weeks as well as resume my sex life (LOL). Dr. Nigro said he understood I was asking this because I didn’t want to have sex thinking I would break, which were my thoughts exactly. LOL!

Q: Will the surgery be held at St. Joseph’s or Phoenix Children’s Hospital?

A: Most adult patients have their procedures at St. Joseph’s. I told Dr. Nigro that I did not have a real preference but that I have been in Children’s hospitals my entire life. In certain cases Dr. Nigro will advocate for an adult to have their procedure at PCH versus St. Joseph’s and he believes my case is one of those cases. I am fairly certain I will be at PCH for this surgery which I am actually more comfortable with. The rooms look awesome and I hope to be able to visit the infant/children’s heart units and talk to CHD parents and kids while I am re-cooping.

That concludes the Q&A. The surgical coordinator called me yesterday and advised me that she is waiting on all of my records and dictation from Dr. Nigro to schedule the surgery. She asked when I was shooting for and I told her June. She said that would not be a problem as they do not currently have any surgeries scheduled yet for June so I get to choose to have it whenever I want. I also gave her the heads up that I wanted to have the surgery at PCH and that Dr. Nigro was in agreement. She again said no problem and that they would call me back to schedule as soon as all the records were in.

I am still nervous but feel better about the procedure over-all having met my surgeon. Dr. Nigro was straight forward and was able to answer all my questions without pause. He definitely knows his shit!

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!

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?

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!!

For me? Clowns. Most children love clowns. A clown’s job is to make children laugh but every time I saw a clown as a child I froze with fear, cried and even ran screaming. I wasn’t just scared of them, I was horrified.

When I was 4 years old my mother entered me into one of many beauty pageants (back before pageants could instill fear as they do these days). I was backstage practicing blowing kisses when my mother discovered the worst possible scenario. The pageant coordinators planned for a fully dressed/made-up clown to be on stage with the girls when we were all marched across stage one last time before judging. My mother told the coordinators “If you bring that clown out with my daughter on the stage, she will freak out. She is deathly afraid of clowns and if you are going to do that I can’t let her participate.” The coordinator in response said “Ok, we understand, no problem.” My mom made it back to where I was rehearsing thinking she had saved the day and averted a total crisis. So. Totally. Wrong.

The individual portion of the competition was complete and it was time for all the girls in the pageant to line up on stage side by side for the finale before judging. I was happy as could be smiling and waving and that’s when it happened. My worst nightmare had come true. Out of the corner of my left eye I caught sight of the clown behind me. Now, at 4 years old you are small and adults are like giants. So here I was with a giant killer clown behind me. I screamed a blood curtailing scream and took off faster than greased lightning. My adrenaline must have completely taken over because I missed the stairs to the stage and dove off of it instead. All I knew was that I wanted out of there as fast as possible even if I had to defy gravity to do it. I ended up hitting my head and having to be picked up and carried backstage to have my head tended to. My mom also ended up giving the coordinator a good piece of her mind with every expletive she could think of. I never participated in another pageant. The best part? A few of my family members video taped the entire incident. So if I ever wanna re-live the first time I decided to crowd surf all I need to do is call an aunt to borrow the home video.

I often wondered as a kid why I was so afraid of clowns. As I became an adult I heard first hand from my mom exactly how I had developed my fear of clowns. When I was in the hospital for one of my surgeries I had laid down and fallen asleep in the middle of the day. My mom saw this as her opportunity to grab herself lunch in the hospital cafeteria. She went to the nurses station to tell them that she would be back in around a half hour and that she was only going to get some lunch. When my mother came back from the cafeteria she heard me wailing and her first thought was maybe there was a blood test underway as was common (I was SUCH a screamer of needles!). When she rounded the corner I don’t think she believed it. Two teenagers dressed as clowns were going around the hospital cheering up the patients. They found my room and hovered over the hospital crib. I woke up staring at two clowns and my mom nowhere in sight. I proceeded to scream bloody murder. Maybe I thought they had either eaten or abducted my mom. To be honest I really don’t remember what I could have been thinking was going on. That is when my fear of clowns began. Suffice it to say, and I don’t know why to this day she did it either, my mom still thought it would be cute to hang a clown that sat on a swing from the ceiling in my room. That thing creeped me out every night.

I would like to thank my CHD and the hospital for instilling fear into me from the age of 2. To this day I am not fond of clowns. I have never and will never watch or read Stephen King’s IT. I will never have any clown figurines or dolls. If I ever have children, I will not expose them to clowns.

1. When my mother was pregnant with me the obstetrician told her she could be screened to see if I would have heart issues since my older sister passed away from an unknown heart condition. My mother was also advised that if the test showed any abnormality she could opt to terminate the pregnancy. Being the woman she is, my mom told the doctor there was no need to screen because she would deal with whatever was handed to her. If this screening becomes state mandated how many women will terminate their pregnancies?

2. Why is the STATE mandating a CHD screening? To my knowledge no other disability is mandated by the state for screening. Shouldn’t this be a choice of the potential parents?

3. This mandatory state screening will increase health care costs as the testing costs around $1,500. The tests also have not been proved to be accurate by the medical community. If the universal health care plan goes through and less skilled physicians are practicing the public will be paying for a test that should be optional to be preformed by someone who may or may not be able to help or have little effect on the child’s outcome.

*sign* I just don’t get it…

In the 1980′s when two infants were in the PICU (pediatric intensive care unit), they were placed two to a crib. The babies were laid foot to foot with their heads at opposite ends of the crib and coupled by their shared disabilities. At 5 months old I shared a crib with a boy who also had a congenital heart defect, although he did not share my diagnoses. We were the same age and affectionately nicknamed Pebbles and Bam Bam by our nurses. Unlike me, Bam Bam suffered from an anomaly called TGA (transposition of the great arteries). This defect is classified by the following traits:

Transposition of the great arteries is a congenital heart defect in which the two major vessels that carry blood away from the heart — the aorta and the pulmonary artery — are switched. In transposition of the great vessels, the blood goes to the lungs, picks up oxygen, and then goes right back to the lungs without ever going to the body. Blood from the body returns to the heart and goes back to the body without ever picking up oxygen in the lungs.

TGA and TA, my defect, are both classified as cyanotic heart defects. Cyanotic heart defects are defined as defects that cause decreased oxygen in the blood that is pumped from the heart to the rest of the body. This causes the skin to become blue and shortness of breath. Bam Bam was also a pioneer for his defect. TGA is the second most common of the cyanotic anomalies and occurs in 5 to 7% of all congenital cases. TGA is dominantly linked to males as 60 to 70% of all TGA patients are male.

Bam Bam and I were both recovering from open heart surgeries and our parents forged a hospital friendship on the common ground of their children. After my hospital stays Bam Bam and I continued to share a parallel life although we had no contact.

When I was 12 we moved to a small town an hour from where I was born. My mother took me to my new school to get me registered and ready to enter the 7th grade. Upon entering the administration office the office secretary recognized my last name and asked if my first name was Christina. I eyed her cautiously because I had no idea how someone I had never met knew my first name. When I replied and told her that was indeed my name she responded with “You won’t remember me but you shared a crib with my son when you were in the hospital for heart surgery. He goes to school here too.” I got immediately excited and realized the little boy the nurses deemed Bam Bam was real and we would both be going to the same school.

Bam Bam and I still keep in touch to this day as we have an extremely unique commonality and stories no one else could tell. Today Bam Bam works as a press coordinator for NASCAR. After comparing notes we realized that we both shared the same cardiologists in child hood as well as in our starting adulthood. To this day when I see Dr. Bullaboy he asks how Bam Bam is doing and vice versa and gives each advice to give to the other based on our visits with him.

You never know when you will make your first friend in life and what experiences you will share. I consider myself fortunate to have a friend who has been through everything I have and then some.

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.

“To the outside world we all grow old. But not to brothers and sisters. We know each other as we always were. We know each other’s hearts. We share private family jokes. We remember family feuds and secrets, family griefs and joys. We live outside the touch of time.”

This statement could not be any more accurate. As much as I think about how complex my life has been in the past 27 years, I also think being my brother didn’t  have an easy load to tow either. My brother is 6 years older than me and my sister was 3 years older. My brother was very protective over my sister when he was a child. At the age of 3 he would stand next to her playpen at the babysitters with a baseball bat for when anyone tried to get near her. Talk about personal bodyguard!

When my brother was 4, he saw my sister collapse and die of cardiomyopathy (where your heart is completely dead tissue) on her 2nd birthday. Yes, on her birthday while my mother was frosting her cake she collapsed. She died two days later after my parents were told she had no brain activity and decided to have the life support machines turned off. When 911 was called my brother was whisked away to my aunt and uncle’s house as soon as the ambulance arrived. When my brother was taken home he arrived back at home alone. It could not have been easy at the age of 4 to have a playmate one day and then suddenly be alone with the only explanation being that she was with Jesus considering 4 years old is hardly the age of reason.

Fast forward 2 years later and here I come into the world. Due to his previous experience with having a sister my brother immediately wanted to know if my mother had given birth to a baby brother or a baby sister. When he was told he had a new sister he told them to take me back because sisters die. I did not come home from the hospital right away so there was no way they could prove to him that I was alive. He asked my mother if I was going to die and unfortunately, because of my heart problem, my parents couldn’t tell him I wasn’t going to die due to the extreme uncertainty of what the future might hold. Her response to him was “We don’t know if she is going to die but if she does we are going to love her until Jesus takes her with him.” I imagine my brother probably was not comforted by her answer.

In the months following my birth my brother was convinced I was dead and my parents were not telling him. He still had not seen me and figured I was dead and they were lying. My mother finally decided enough was enough and she needed to prove to him that I was, in fact, alive. Back in those days, and it may still be the same, children under the age of 12 years old were not allowed into the ICU. This presented a problem. If my mom couldn’t take my brother up to see me how was she going to show him I wasn’t dead? My mother, being the smart woman that she is, fought for my brother and told my doctors that he needed to see me because he was convinced I was dead. My cardiologist, Dr. Johnson,  explained the issue to the nurses on the ICU floor. If you have ever been to a hospital you know the nurses control the floors, not the doctors. The nurses dug in their heels and told my doctor it wasn’t possible, rules were rules. Dr. Johnson (who I think loved me as one of his own children) told my mother “Well that’s fine, if I can’t bring him up to see her I will bring her down to see him”. My doctor told my mom to bring my brother to the hospital lobby and 15 minutes later he had smuggled me and all of my machines into the elevator and down to the lobby. My brother got to see me and his response?? “Ewww Gross!” (thanks!) I was told Dr. Johnson actually got a good earful over his stunt from the nurses on my floor but I doubt it phased him.

My brother kept his distance from me emotionally for several years until he was sure I was going to make it. And really, can you blame him? As we grew up and by the time I was a teenager my brother and I developed a better relationship. There are other factors that I think about and sometimes feel guilty for. Being that I’m not a healthy person my parents were always shuffling me from one doctor or the other. They also had to pay attention to things like making sure I took my medicine and didn’t overdo it with physical activity. I also think both my mother and father had some guilt that I was born this way and tried to make up the difference with me wherever they could. In turn, I think my brother kind of got the shaft. Was it intentional? No. Did they try the best they could to treat us equally? I really think they did. It just so happened that my medical problems required more attention than normal leaving somewhat of a skewed perception of equality.

Today my brother and I are close. We know we are the only two people who have been through the same experiences within our family and can only relate to each other from those experiences. We now live in different states 3,000 miles from each other. We talk on the phone every few weeks but mostly keep in touch through Facebook. Although we are not always in direct contact I have no qualms in saying that when push comes to shove I can always count on my brother to have my back and be there when I really need him. He turned out to be the best big brother a girl could ask for!!!