#they made me get surgery and go through having to get another picc line after removing my port

[xviruserrorx]

Random fevers my belothed

[jamieroxxartist]

Dani Update: 9:05am EST 9.18.23

Sorry I haven't been posting the updates as not much has changed with her condition. For those who don't know about month and ½ (or so) ago my Wife Dani had a severe diverticulitis attack and wound up in the hospital for a week. She then came home and then was back into the hospital for another week after that. She has been home since. Throughout this whole time she has been on very aggressive IV Antibiotics to fight a very aggressive infection she has in her intestines and colon. These IV's I administer daily to her through her dual PICC line. She is sick. Real sick.

We are doing it though and she is scheduled for surgery first part of October to remove part of her digestive track. This is a real serious deal.

One of the many things that sucks about this whole thing is she has to be on an extremely bland liquid diet. If she goes off this we have learned, severe pain and throwing up follows. These Antibiotics and the infection that they are fighting are no joke. So far she has lost 55lbs!

And if I hear one more A-hole say or comment, 'Oh but you're losing weight' l'm going to lose it. Try it! 55lbs in a month and ½! Try that on for fun. She's losing weight because she's starving, Braintrust! Anyhow as you can probably tell I am wound a little tight myself. I don't have a very big reserve of patience for nonsense.

So anyhow Saturday night our very good friends Julie & Hannah came over to hang out and help and they are always awesome and it was nice to see them. I made a Pot Roast stew in the slow cooker all day. And the plan was for me and the girls to eat that for dinner and Dani was going to take some of beef broth (Strain it, everything has ot be strained for her) and put a little over some mashed potatoes. Mashed Potatoes seem to do ok for her, so long as they are not too dry. The poor girl was just desperate for a little flavor. A month and a ½ of Mashed Potatoes, Yogurt, broth etc.

So we had dinner and a real nice visit and everything was great.

It hit her the next day. The experiment failed. Terrible cramps and Pain and throwing up etc. She couldn't get out of bed for the day. Knocked her down hard! So yeah, yesterday was a real hard day.

She seems to be a little better today. Coming back from it. But she's of course scared to eat and just really sick of all this. It's rough, real rough.

She has doctors appointments tomorrow. So she would like to be mobile for that. So we're trying.

Anyhow Thanks again everybody for the well wishes and kind thoughts. This is were we are at today.

[cbsmithpks]

Every Parent’s Nightmare

We worry about our children from the day they are born or perhaps even from the day we find out that are we are pregnant. In September of this year, we had the scare of our lives as parents.  After living through this nightmare, I was told by many parents that I should blog about our experience to help raise awareness of the symptoms of joint sepsis in children.

On a typical Thursday evening we thought our 11 year old daughter had the stomach bug that was going around the middle school. She had a fever of 103.4 and was throwing up.  This lasted all of Thursday night and most of the day on Friday. But by Friday evening she felt somewhat better and the fever had dropped to 99.5.  We thought we were out of the woods, but she was up much of Friday night with a fever and throwing up. I even told another mother on Saturday morning that this was the worst virus I had ever seen and I hoped other kids didn’t come down with it. Later Saturday morning, when our daughter tried to get up, she couldn’t walk. She was in severe pain. Even the weight of her leg hanging when we carried her was unbearable. We knew something was wrong. Fortunately for us, our good friend, Maureen is a Pediatric PA. She took a look at her and told us to go to the ER that she thought she had a septic hip.  “A what!!” I exclaimed. How does a perfectly healthy child get sepsis?

We rushed to the ER and were there for over 4 hours.  They did some blood work, an x-ray and we were told she had Transient Synovitis, which is when a viral infection moves into a joint. We were told it isn’t serious and that it will go away on its own. We were sent home with a child still unable to walk and in excruciating pain.  That night things got even worse, she was up all night with a fever, throwing up and in unimaginable pain. In the morning, I called my friend, Maureen. She said she really felt like our daughter had sepsis and that the ER was incorrect. She reached out to our doctor (with whom she works.) He was not on call this particular weekend but lucky for us, he went ahead and met us at his office early on a Sunday morning. Within just a few  minutes, he said, “I am pretty confident that this is a septic hip.” We were admitted to the local hospital where blood test and an ultrasound confirmed the diagnosis.  

While my husband went home for the night to prepare for an oncoming hurricane (we live on a barrier island off the coast of NC,) my daughter and I were taken via a 3.5 hour ambulance ride to University of North Carolina (UNC) Children’s Hospital. We arrived in the middle of the night and within 5 hours of our arrival, I had already met with the Pediatric Team, the Infectious Disease Team, the Orthopedic Team, they had drawn their own labs, done an MRI and our daughter was in pre-op for a joint aspiration.  After that surgery her pain was a bit better due to some pressure being relieved.  That surgery along with the MRI and blood work confirmed the seriousness of her diagnosis and within 2 hours of waking up from the first surgery, she was back in surgery again.  This time they had to open up her hip and go in and clean the infection out of her hip.  A drain pump was inserted to remove the fluid. She was in excruciating pain after this surgery. To say that my heart was breaking for her is an understatement.  She was put on very strong antibiotics while we stressfully awaited the 48 hours for cultures to grow to see if the bacteria was treatable with antibiotics (i.e. that it wasn’t antibiotic resistant.)  She was given an echo-cardiogram to ensure that there had been no damage to the heart. “What!!! This was a possibility?” Another thing to worry about.   Fortunately the results were excellent!  We found out that the bacteria would respond to antibiotic treatment so next we moved into a “wait and see mode” as we waited for the antibiotics to do their thing.

To be considered free of bacteria, blood cultures have to be clean for at least 72 hours. Four days after surgery we had a big scare as the blood culture came back still positive for bacteria.  They were getting her ready for a 3rd surgery when the orthopedic team came in and said that they thought that maybe pulling the pump the prior day could have caused bacteria to backwash into her blood stream and the blood test picked up on that.  So the infectious disease team agreed to wait 24 hours for another blood sample. This was a huge relief as our daughter, who starting to get some relief, was terrified of having this clean-out surgery again as it caused her extreme pain the first time. Fortunately, the orthopedic team was correct and her blood was clean 24 hours later. So now we were 24 hours into our 72 hour wait before she could be considered for discharge. Once her blood was good, she went in for a minor surgery to have a PICC line installed to deliver IV antibiotics for several weeks before she could transition to oral antibiotics. She also started physical therapy to learn to walk with a walker.

She ended up in the hospital for 9 incredibly stressful days. It was difficult for my husband and I to see her in this kind of pain.  We were physically and mental exhausted. We tried to shield her from the seriousness of her condition and it was very difficult to stay positive and not breakdown. I know any parent who has experienced a seriously ill child can relate. It was without a doubt the worst 9 days of my life. I swear that still today when I think about it -  I have PTSD. It makes me almost nauseous.

While at UNC-Children’s Hospital we were educated on the ramifications of not getting timely treatment of sepsis in a joint.  Because the hip is still growing, it is of utmost importance to protect the cartilage. Patients who sustain damage to their cartilage are risking permanent hip joint damage. These patients may require hip replacement later in life if the damage to the cartilage is severe.  There can be complications such as osteomyelitis, bony erosions, damage to the heart and other organs and even death.

Until this, we had no idea that a perfectly healthy, very active, 11-year-old girl could get sepsis in her hip.  Nor did we know how serious and how painful it could be.  Once the antibiotic was working and she was out of immediate danger, we began asking questions about her long-term prognosis as she isn’t the sit around the house and watch TV or read kind of kid.  She is a middle school cheerleader, plans to tryout for the track team, she bikes, surfs, swims, kneeboards and tubes. She never sits still.  The thought of long-term damage, still weighs very heavily on me as I keep thinking --- “was there something else I could have done after the visit to ER with a misdiagnosis?”  In my gut I knew something was wrong.

The delay caused by the misdiagnosis made it day 5 since first symptoms. After 5 days is when one can get into trouble with complications. We won’t know if her growth plate was damaged until we return to UNC Children’s Hospital early next summer. Her orthopedic surgeon feels pretty confident that all will be ok. Once she was in hospital, with the help of the doctors, we had traced back her symptoms.  We learned that her hip hurt her on Wednesday during PE, but she thought she had pulled it in cheer practice and she wanted to cheer at the football game Wednesday night. I also recalled that on Friday, when we thought she had a stomach bug, she mentioned that her leg hurt.  She didn’t say hip.  I chalked it up to a sports injury.  Because for the life of me I couldn’t imagine that fever, throwing up and joint pain could mean a septic joint.  I had never heard of such thing. If it weren’t for our good friend, Maureen, being insistent on this being sepsis, I am not sure what we would have done. I shudder to think of the outcome. 

At this point, I am sure you are all asking “how does a perfectly healthy child end up with sepsis in her hip???” What we learned is that she likely had a cut somewhere on her body and the bacteria got into her blood stream when she came in contact with it. The bacteria was Staphylococcus aureus which is a very common bacteria found everywhere. Typically your body fights it off but for some reason, unknown to the doctors, several thousand perfectly healthy kids a year don’t fight it off and it takes up residence in synovial fluid in a joint area. So we will never know how or where she picked this up or why her body didn’t fight it off. 

While I hope you never have to experience anything like this in your lifetime, I do hope that by writing this article, others can learn more about sepsis in a joint and get quick treatment. While this is not very common (about 5 kids out of every 100,000 kids) it is scary when your kid is one of them. If your child has a fever and has severe joint pain --- shoulder, hip, knee, ankle, elbow or wrist -  it is a medical emergency.  Don’t make light of it. Insists on blood work, x-ray, ultra-sound and be sure to have them seen by a pediatrician, as this is more common in kids than adults. And from what we have learned septic joints are missed quite a bit by general ER docs that are not trained in pediatrics.

Finally, we would like to thank Maureen Young, our awesome Pediatric PA; Dr. Andy Kiluk, who is incredibly gifted at what he does, for rushing to office and giving up his Sunday to ensure that Peyton was diagnosed and transferred to UNC Children’s Hospital where she received exemplary care.  And a HUGE thank you to the following groups at UNC Children’s Hospital (they were wonderful) -  the Pediatric Team, the Orthopedic Team, the Infectious Disease Team, Radiologist, Cardiologist and Physical Therapy. So happy to have such a great resource in North Carolina!

Now..... go hug your kids because I learned that we are not promised a tomorrow. It can all be striped away in the blink of an eye. We were lucky, but it was way way way to close for comfort!!!

[help-yourself-blog1]

let us begin.

Hello, my name is Jessica Kasch and in 2014 I was diagnosed with brain cancer. To be more specific glioblastoma multiforme stage IV. I want to share my story with the world and let people know that there is always hope. I want to inspire people to want to fight the good fight even when the odds are against them. I also want to inform people of the importance of a healthy and well maintained diet and what I believe has helped keep my MRI's clear and my spirits high.

It all started when I was having the WORST migraines with the worst pressure in my head and was in almost constant throbbing pain every day. I couldn’t even bend over to grab my dogs leash without my head feeling like it was going to explode. Most times I stood up I would black out and have to wait a few seconds for my sight to come back. Sometimes even just moving my head to the side could cause a black out. I was miserable. I started to see dots in my vision and could hear whirlwind sounds in my head. A little bit later I started to be able to see my heart beat in my eyes and towards the end I could see a black dot in my vision that was actually my pupil from my eye balls. For a few days I would wake up with terrible migraines that were so bad that they would make me throw up in the mornings. And throwing up in the morning made me think I was pregnant.

My mom started to get a little worried and made me set up an appointment to see her eye doctor because we thought most of what was happening was because of bad vision. I almost cancelled my appointment the night before because we were having a bbq with friends the next day and I thought I could put it off. The next morning when I woke up I didn’t see the black dot anymore it was RED! And I could also see the little veins.

That was it. I HAD to go see someone. I went to Dr. Antoine of Antoine Eye Care after the routine testing was done Dr. Antoine looked at the pictures of my eyes and decided to dilate them. I left the room to look at glasses while I was waiting for my eyes to fully dilate. When he called me back in he sat me down and asked me to call someone to come pick me up. I asked “Why?” and that’s when he told me I needed to go to the Emergency Room right away. He continued to tell me I needed to get a CT scan because there was a massive amount of swelling in my brain behind my right eye.

I was picked up by my husband (boyfriend at the time), and met my family at Missouri Baptist Hospital where I got my CT scan. The nurse called us into the back where we waited for the results. The woman that came in asked me all kinds of silly questions like, “What year is it?"  and "Who is the president?" along with my name and birthday. She also made me do these little tests with my eyes and then had me push her away and pull her towards me with my arms and legs. I thought she was kidding because of how silly I felt so I was giggling. She then sat down on my bed and with a serious look on her face said “You have a mass on the right side of your brain.” I was still in the mindset that she wasn’t being serious so I chuckled. A few seconds went by giving me time to think about what she had just said, I looked to my husband and he was in shock with tears falling from his eyes. I turned to my mom and she looked terrified. I realized then that the nurse was most definitely not joking. From that moment on everything got real serious. I was rushed to Barnes Jewish Hospital where I had my very first MRI. After the MRI the doctors came in and officially diagnosed me with a “low grade” brain tumor. A week later my surgery was performed by Dr. Zipfel at Barnes to extract the tumor. The surgery was a total success and lasted 12 hours.

The surgery was a total success and lasted 12 hours.

Around 4/5 days after surgery; as I was gathering my thing to leave for home, the pathology on my tumor came back. My tumor was not “low grade”. In fact it was as “high grade” as I think you can get. Right then and there they diagnosed me with glioblastoma multiforme Stage IV. The deadliest form of brain cancer. They were able to get all of my tumor out during surgery but since the cancer is so fast acting they had me scheduled for 6 weeks of radiation on my brain with chemo, and then a year of just chemo.

When I got home from the hospital the recovery was pretty harsh. I wasn’t able to do basic things like walk up and down stairs alone. I couldn’t sit and stand alone. Couldn’t go to the bathroom alone. I couldn’t walk alone. I couldn’t remember how to deal cards or do math. I couldn’t sleep except for on my back. I was on steroids for swelling that made me eat everything in the kitchen and gain like 20 lbs. The steroids made me break out all over my body. Not only did I look like Quasimodo with my boulder-like swollen head but I had acne everywhere that looked like a rash that covered my body all the way up my neck and face. I was miserable. All i could think about to stay positive was that I was alive and had my family with me.

Within a few weeks I was up on my feet, slowly but surly bettering myself. I couldn’t believe how supportive people were. My mother insisted that we stay at her house so there was always someone to watch me. My friends would come over to see me and bring me little gifts. I still remember everyone who came and those that showed their support in other ways and for that I am forever grateful.

A few weeks after my initial surgery my head started to leak fluid at the incision. I didn’t have a fever and I didn’t feel sick but I had to go to the Hospital to be checked out. After a week in the hospital being looked at, I was sent back home. The next week my head started to leak again. I had to go back to the Hospital and was immediately rushed to the O. R. for surgery because there was an infection in my head. The infection was around the bone so my bone flap had to be removed. The doctors put me at ease letting me know that with the infection I would have a higher survival rate.

Because of the infection, I needed to have a PICC line put in my arm direct lining antibiotics straight into my heart. I had 6 weeks of this with Nurse Tyler waking up and giving me my medication every morning at 7 am and every night at 7 pm making it very hard to get a good nights sleep or be able to go out anywhere. Once a week an actual nurse would come to my house to clean the line.

After I finished my 6 weeks of antibiotics, I started my radiation therapy and chemo therapy. The thought of having my brain radiated was pretty scary but thanks to Tyler it was much easier to bare because he made me a mixed cd of favorite songs to listen to everyday.

 After every radiation day he would have a picture drawn for me saying things like “fuck cancer day 1-30″. I actually ended up looking forward to my treatments because it was my time to just relax and focus on the music and not what was happening in real life.

In the beginning I was told I wouldn’t lose my hair from the chemo and radiation which was comforting because I took so much pride in my colorful hair. Well that wasn’t the case and I ended up losing all my hair after all. Bummer. It started to slowly fall out so I just had my surgeon shave it all of before my second surgery because I didn’t want to risk another infection.

Instead of being upset about my missing skull piece and bald head I took pride in wearing colorful scarves and wigs.

After getting diagnosed with cancer the hospital tells you to just go back to your normal diet but my family and I knew better than that. We immediately started to research. A huge help was and still is my moms chiropractor Dr. Laurie Mestdagh of Mestdagh Chiropractic. He told me what to stop eating, what to start eating and what supplements for me to take during the chemo and radiation process. He is truly a wonderful person. Thanks to him, my family and friends, and Tyler I made it through radiation and the first part of chemo with no problems.

After a little bit of time passed I was sent to my now Wellness Doctor, Dr. Eric Nepute of Nepute Wellness. He heard about my story and wanted to take me on as a patient pro bono. He really loved my spirit and the good vibes I was able to put off through such a tough time.

I have MRI’s every 10 weeks for the rest of my life and so far so good on everything! I couldn’t be more proud. I want to say “Thanks!” to my father and Tyler for coming to every boring MRI day and my results days. You guys make everything easier.

After my diagnosis I put myself on a SUPER strict diet and I’ll be posting more about that in other entries.

I thank God every day and night for my doctors, my family, Tyler, my friends and anyone else who has helped me through the hardest time of my life.

[trangialy]

Dearest Taylor,

When you read this note, just so you know, your family loves so much, so so so much. And here is what your mom has to tell you,…

        My sweetheart, I was admitted to Presbyterian, Dallas at 2:00 am. I was 22weeks 6days. I stayed bed rest for 8days, and my contraction started on Jan12 at 11:30am. You was 24months. I went into labor early in the morning at 5:00am. Your dad and I were so nervous, he stayed with me the whole time, and we prayed. I was scheduled to do a C section, but then moved to 7:00am, then 10:00am. At 10:30 am, you was born.

Dearest Taylor, I love you

        Dr. Jake Walters helped deliver you, you weighed 1lbs4oz. I did not get to see you right away, other than seeing the NICU nurses pushed you away. I wanted desperately to hold you in my arms. This moment, my life has changed, forever. This long journey I have been carried you with me in my womb, every single injection I had to do myself, you have given strength, you have given me hope, you have given the courage. From this moment on, you are on your own, fighting. But dad and I will always be here, for you.

        Eight hours later, 7:00pm, NICU doctors came by and told me that you was not doing very, that your oxygen level was at 50, and they already tried to increase the ventilator to the maximum, that if you do not get enough oxygen for a long period of time, you can have brain damage. But the cruelest thing I ever heard is that, there is a possibility that you will not make it tonight. Many information, many news, many explanations, many sciences came at me, just nothing to my only one desire, I need to go see you, right now, even though this is could be my first and my last time seeing you.

        You looked purple and blue when I came to see you. You was so tiny, as if I could hold you in my palm, but even so, I would hold you tight and not ever let you go. Dad and I cried, deep down we were collapsed, but we thought of you, you gave us power to calm down, we started to ask questions and listen to the doctors. We would not ever give up on you, Taylor. Please fight together, with us, mom, dad and family.

They told us that they would try the very last hope, a medication that can either keep you alive or make your lung collapse. Even if the chance is very low, we will take it, because I believe in miracle, and I believe in you, Taylor.

And it happened. Miracle happened. God Is Good.

Dearest Taylor, I love you.

        Soon after, a nurse came to baptize you. We shared prayers among family, friends, and staffs. Tears kept falling on our cheeks. You did it, my sweetheart. You have reacted very well to the medicine, and the oxygen increased to above 80%. You was breathing again on your own. The doctor said that you are such a strong fighter, and that you got through even when the chance was a narrow escape.

        Every day is a new challenge for you, we found a bleeding in your left brain, which may lead to learning disabilities later on. But we cherished every little thing you have gained each day, and that is your first day feeding on my breast milk. I feel the joy running in my veins, happiness fills up my worried heart. I am sorry that I could not give you more, but just enough to coat your stomach layer.

        Jan15, there was a tornado nearby, and I rushed to the NICU, worried if power outage could affect the machine you are on. Hallelujah, I was assured that the hospital had backup generator.

        Jan16, I got to change your diaper for the first time, and the ultrasound result came out, but sadly the bleeding in your brain is still there. On a scale from 1-4, with 4 being the worst, you got 2. But everything would be okay. Your veins are so small that is hard to get the PICC line in your right leg today, even one of the veins popped. My heart breaks every time they stick a needle in your tiny body. Tears keep falling down my face. If only I can take your place, so you don’t have to suffer, God please save my child. Please bless her and get her through this.

        Every day is a nerve racking kind of day, when you don’t know what the doctor will say next about your child. All I could do is to pray for the best. And I was blessed today with good news that the bleeding in your brain did not spread. Now, we just need to focus on your breathing. You have been depending on the breathing machine that sometimes you forget to do it on your own.

        Jan 21, your oxygen keeps swinging up and down. They did a scan and saw a PDA [patent ductus arteriosus] in your lung. Mommy knows so many terms now, sweetheart. I researched and read a lot, so I can know exactly what you are going through, so at least Mommy can feel your pain. I love you.

        The doctor told me that if the PDA is not closed, it will pump blood or fluids back into the lungs and ends up making your oxygen swinging up and down. The solution is to use medicines and if it does not work then we must proceed to surgery. The only thing is that the medicine comes with several side effects that could damage your kidneys, guts and platelets if you do not react well to the medicines. So, let’s fight, sweetheart.

        Jan 23, today your lungs are not working so well, and the nurse have to increase your oxygen to 100%, and let the machine do all the breathing, which beats on your lungs like 600 times per a minute. Sometimes I felt grateful for the high fluency ventilator that save your life, but at the same time it hurts me to know that it harm your lungs but nothing I can do. But today is the first time you ever pooped ever since you was born. I am happy still to celebrate every little thing with you.

        They found acid in your blood and high level of potassium. It made you unable to pee. Look like there is an infection in your body that the doctor must consider. But good news is that your PDA hole is closed, and your oxygen drops to 40%.

        Jan 24, you have started out the day beautifully with an oxygen down to 28%, and they found the type of virus, called E Coli. They will continue to treat you with antibiotics for 21 days. They did the culture and the virus is not growing anymore. You have pooped and peed a lot more. Tomorrow they will start feeding you again. Things are looking brighter! We had hope that the doctors will soon switch you to the conventional ventilator.

        Jan 27, your PDA hole opened again. But my sweetheart, you are 2 weeks old today. It seems like I been in the hospital for 2 years. Every day is a struggle but I won’t trade you for the world. My life is all about you now and I want you to know that I love you more and more each day.

        Jan31, Doctors said that you will need PDA surgery, which is your chance to get off the ventilator. Till then, you still need dopamine to keep your blood pressure at normal. The doctor assured us that you will be okay from now until surgery.

        Feb2, you are getting steroids this morning for your blood pressure. They are checking for more infection, and doing a head ultrasound. Still waiting until your antibiotics is done before they can schedule surgery.

        Feb4 Today is the best day of my life, you have got off the big noisy vent, and use the conventional vent instead. It means you can be able to breathe on your own better

        Feb8 Rain is another part of how life goes, but after rain, there is always rainbow. We been through so much and finally today I get to hold my baby for the first time! This moment I will never forget. My baby, my angel, Mommy loves you so much. I watch you grow every day. And now you are almost one month old and weigh 1lb8 oz. Mommy is so proud of how much you fought to be here, and how strong you are. You give me the strength every day to face anything that life throws our way.

        Feb10 Be Han you are exactly one month old, my beautiful baby girl! You are still tiny but you are powerful and strong. I am proud to be your mom. Lord, I cannot thank you enough for blessing us with a beautiful daughter. Amen

        Feb12 You are slowly gaining weight, 1lb 9.4 oz. Doctor Nora told me that her goal is to put you on CPAP in a few days. That is fantastic. We are moving so fast I can’t believe so much has changed since your infection. We are blessed and thank God for all his doing.

        The nurse and I sat and tried to count all the things that had happen to you since you was born. It’s more than a person can ever have in their life time: 121 blood taken, 43 X-rays, 8 head ultrasounds ,7 Heart Echo & Surgeries, 5 Spinal tap (where they take a needle and stick in your spine to get the fluids from the brain). There’s so much more but I cannot count them all. But, you are such a good girl. Each time we come visit you move around a lot as if you know we are there. Auntie Debbie and Hanh came in to see you often. You have us, Taylor.

        Dad comes see you every day after he gets off work. He would drive all the way from Fort Worth to see you, then back to our home in Denton. Back to visit you, then work. He love to see you and read prayers to you day and nights. I love him so much and I want to tell him how thankful I am to have him, and that I thank God for giving you, giving us good doctors and nurses. I thank God for giving us hope and making our faith stronger. I would not change anything because I think God want to use you to bring us closer to him, or maybe just bring me closer to God. Your dad has always been a believer, but me, until now, I have believed in God more than ever before. I do not want to think negative that Why You? Why me? Why us? Perhaps, this is God’s plan for us. I believed God chose you, and us because God knows we are strong. And difficult things happen not to make us sad and weak, but to make us a fighter, a good one like you, my sweetheart. You are a miracle.

Dearest Taylor, I love you

~Music: “Faith Remembers” – Zachary Bruno

[twdeamspace]

Cancer sucks.

5 years ago (March 8) I was driving to work when I received a phone call I had been impatiently waiting for. A phone call from my doctor, confirming my worst fear, that I had cancer. That drive was only 23 miles, but might as well have been 1000. News like that does funny things to people. I think I laughed as much as I cried. I’m sure anyone who passed me on the freeway thought I was losing my mind. I probably was. At 26 years old, I couldn’t wrap my head around it. I was healthy. The radiologist had found a tumor a right above my heart at 10cm in size. He made sure I was aware that Hodgkin lymphoma (also called Hodgkin’s lymphoma and previously known as Hodgkin’s disease) is one of the most curable forms of cancer. Having that positive information made this giant pill easier to swallow. I was sick, but I wasn’t going to die. Telling my loved ones was incredibly hard. I’ve always said, it was easier being the sick one. Had it been someone close to me, I don’t think I would have been as strong. Once diagnosed, my team of doctors and nurses didn’t waste any time. First off was a series of tests to determine if the cancer had spread any where else in my body and to make sure I could handle the aggressive treatment. These tests included a Pulminary Function Test, CT scan, PET scan, MUGA and bone marrow sample retrieval (ouch). Once these were completed I was sent to the hospital to get my portacath. This simple surgery is where they insert a device right under the skin, which makes it easy for the chemo to be administered. My cousin Julie, lovingly helped me name that POS Portencia…which sounds like an evil step-sister from some Disney movie. Once the procedure was complete I was sent home. The following week my infusions would begin. The next day (Saturday) I was driving to my hair-dresser friend Tonya’s house. I had always wanted to try a pixie cut. With the high possibility of losing my hair, I thought, why not try it now?! I was almost to her house when I received a call from my surgeon. This is odd, I thought, when I answered the phone. He was calling me on a Saturday, from his cell phone, this isn’t good. He asked what I was doing and if I had eaten anything that morning. From there he proceeded to tell me that on reviewing the radioactive PET scan I had Friday afternoon, he saw some complications relating to the portacath. First of all, the tumor itself was very large and was encroaching on everything in my upper chest, pushing things around and out of position. The vein that the catheter was supposed to feed was being impeded by the tumor so there was no way it was going to work to carry the chemo where it needed to go. Further, the catheter had moved into the space where my right lung is and my right lung was deflating. The doctor said I needed to come in to the hospital right away. Within an hour of arriving at RVMC emergency, later that afternoon they were wheeling me down to the O.R. The doctor showed my Mom the PET scan so she could see what he was talking about. He showed her how they would try to move the catheter into a favorable position so it could serve its purpose, perhaps even trying to come from a different angle through a new incision on the other side of my chest. The surgery would take about an hour. An hour and twenty minutes later, he came out and said that the tumor size and position was just not going to allow for that catheter to work there. They had to remove it and they would plan on installing a picc-line into my upper arm where chemo could be administered. The thing that needed to happen ASAP was for us to start shrinking that tumor, and the quickest way to do that is to get the chemo going. Making matters worse, during the surgery I started bleeding into my chest cavity and once they got that under control they had to install a chest tube through my ribs and out to drain any additional blood and fluid. They kept me sedated during the night so I wouldn’t wake up and start pulling at any tubes. I spent Saturday night in CCU on a ventilator, and needed a couple of units of blood. I spent Sunday and all of the last night in considerable pain from the chest tube. I wasn’t able to sleep, and even morphine every two hours wasn’t enough to help me conquer the pain. Monday morning they removed the tube. Having the tube was bad, but trying to recover from that tube was even worse. I then had an electrocardiogram; and they installed a picc-line into my arm. While placing the picc into my arm, the nurse casually said, “I’m sorry this is happening to you. You know, you may not be able to have children after this.” What?! How could she mention such a serious matter so casually. Was this true?! I was 26, in a serious relationship, on the path to marriage, and may not be able to have kids? Would he want me any longer? Was I defective? All things I was thinking while I quietly sat there, needle in my arm, tears in my eyes. From there I was placed in a “regular” room, and released that next Wednesday. Aside from a few yucky side effects, my chemo was text book. It was double the doses each infusion because my oncologist wanted to be swift in eliminating the tumor. 12 rounds of chemo, and I would be healthy again. My first treatment, my mom sat by my side. My Nana showed up shortly after with a calendar. This calendar had pages and pages of the most beautiful places in the world. Beaches in the Maldives, deserts in the Middle East, and jungles in South America. One of the pages was of Machu Picchu. I turned to that page right away and told my Nana and Mom that this is one place I wanted to visit. My Nana quickly ripped the page right out of the calendar, folded it up neatly, and handed it to me. She told me, when I was completed with treatment, and in remission, I would have to go. I kept that picture with me everywhere I went that year, in my purse. With a firm goal in mind. Throughout my treatment I had my Mom, Nana, and husband (boyfriend at the time) to name a few, by my side. My Dad even helped me financially so I didn’t have to worry about getting my bills paid, because at the time I was in outside sales. The support from my tribe made me focused and kept me positive. Unfortunately, disease creates distance for some loved ones. Distance because sickness makes people uncomfortable. It’s not because they don’t love you, or don’t think about you, but because they don’t know HOW to be around you. Don’t know what to say. OR How to be there. I recently read about a woman who created empathy cards, she wished she had received during treatment. These are SO on point. One reads, “Please let me be the first to punch the next person who tells you everything happens for a reason. I’m sorry you’re going through this.” Another reads, “I promise to never refer to your illness as a Journey…unless someone takes you on a cruise.” One more, “When life gives you lemons, I won’t tell you a story about my cousin’s friend who died of lemons.” LOVE ALL OF THESE! She even collaborated with a compassion expert and wrote a book on how to become more emotionally intelligent and how to appropriately comfort and support someone who is ill. You can find it here. When someone you care about gets sick, don’t just offer to help. EVERYONE and THEIR NEIGHBOR does this. It’s empty. Actually say what you are going to do, and follow-through. My Nana would randomly come by with dinner. My mom, made it to EVERY SINGLE treatment. My husband, told me I was beautiful as I pulled out clumps of hair. These are the things that matter. These are the things they will remember. Fast forward… One year after I finished treatment, my love and I made it to Peru. We hiked up Machu Picchu then even higher to Huayna Picchu, he took a knee, and promised to love me the rest of my life. 4 years ago TODAY, I walked through the doors at Hematology Oncology cancer free. I can still smell the chemicals and taste the saline, feel the aches and the hot flashes. But it is over. I am forever indebted to my family and friends for holding me up, and to the nurses and doctors for helping me fight. To all the people I met along the way that didn’t make it, I think about you often. I promise, I will do my best not to squander this precious time I have been blessed with. You’re with me everyday. Since my last infusion I have become a wife and a mother, and couldn’t be happier with this life I have been given.

from WordPress http://joyandlulu.com/2017/08/22/a-day-to-remember/

[tashasmitofund-blog]

  Nasogastric feeding tube

Bolus formula feeding through NG tube

PEG tube

PEG tube

PEG tube

First day after surgery for my PEG tube

As feeding tube awareness week 2018 has come to a close, I have decided to show a few of my feeding tubes and now to explain a few things. This post will cover:

Why I have a feeding tube

Types of feeding tubes

What are feeding tubes used for?

  I have a feeding tube because of weakened swallowing muscles making it difficult for me to get full nutrition, swallow medication and even sometimes swallow fluids. I use my feeding tube for all of my medication, except for sublingual painkillers which dissolve faster underneath the tongue. I get additional liquid formula nutrition too when needed, otherwise because I don’t have gastric problems thankfully, a bit of good old soup goes through the tube just as well!

There are many different types of feeding tubes, surgical and nasal. I personally currently have a Nasogastric (NG) feeding tube that is threaded through my nose and down into my stomach, I have also had a Gastrostomy (PEG) tube in the past, however that had to come out due to infection. (I am scheduled for another one to be placed, but that’s a whole different story!) A Gastrostomy (G) tube is placed directly into the stomach through the abdominal wall. These tubes are used for many reasons from slow feeds due to gastric problems, feeding in the Intensive Care setting, swallowing problems, aspirating, administering medication and draining of the stomach. A Nasoduodenal tube (ND) is threaded through the nose, and just past the stomach into the very start of the small bowel. Again these tubes can be used for stomach problems and aspirating but also delayed gastric emptying of the stomach requiring nutrition to be absorbed straight into the small bowel, but doesn’t need to go further into the intestines. These tubes could also be used to administer medications for chronic constipation as it’s going directly into the small bowel. A Nasojejunal tube (NJ) Is threaded through the nose, past the stomach and into the intestines. These tubes are usually temporarily placed for those who need nutrition but can’t tolerate it into their stomach. This could be due to delayed gastric emptying, or other gastric syndromes such as psuedo obstructions of the intestines, or even delayed intestinal motility too, however, that may make NJ feedings harder to tolerate. A Jejunostomy (J) tube is a feeding tube placed directly into the intestines through the abnominal wall. There is also a GJ/PEGJ tube which is again placed directly into the intestines with an added ‘extension’ into the stomach too. This could be useful when using the jejunostomy part for nutrition and fluids into the intestines however using the G extension to drain excessive stomach bile and contents to relieve nausea and vomiting. This procedure is more common for those with delayed gastric emptying and conditions that may cause excessive nausea and vomiting. Sometimes people also have a seperate jejunostomy and a gastrostomy tube! Overall there are 3 nasal tubes, NG, ND and the NJ. Alongside technically 3 surgically placed feeding tubes including the PEG/J, G tube and J tube. Surgical tubes can be rather long and bulky coming out of the stomach too, which for some can be awkward to hide underneath clothes, can be painful when it catches on clothes and simply can just get in the way! So for some, a low profile feeding tube ‘button’ can be placed like this one below! This is available for all the surgical tubes G/PEG, J and GJ/PEGJ, however not every person can tolerate the smaller tubes unfortunately!

Feeding tubes may also be used for conditions such as irritable bowel diseases, causing the intestines to be too inflamed or diseased to function properly at that moment in time. To help with chronic constipation. To help people gain weight with eating disorders, people with dementia who have difficulties eating because unfortunately they have forgotten how to and vascular compression syndromes such as SMAS Superior mesentric artery syndrome. One very important thing to remember is that not all people with feeding tubes cannot eat at all! Some people eat orally in combination with their feeding tube, whether it be a specialised diet, a liquid diet, soft food only diet etc, some people can still eat!

Sometimes, unfortunately peoples gastrointestinal system fail completely. This is often due to a condition called gastroparesis – stomach paralysis. Basically the stomach is paralysed and unable to move stomach through to the small bowel and intestines for digestion and absorption of nutrients which takes place mainly in the bowel. leaving people malnourished, nauseous due to food and liquids sitting in the stomach for hours after consumption, often leading to chronic vomiting. The intestines can also fail, meaning the foods cannot pass through the intestines and tend to reverse back up into the stomach sometimes, called reverse motility. When intestinal failure occurs, the intestines cannot also absorb nutrients, nor digest food, leading to chronic constipation, malabsorption, malnutrition, nausea and vomiting. When enteral (tube) feeding has failed and people are still getting dehydrated and malnourished because they cannot tolerate their feeds and fluids, then a process called Total Parenteral Nutrition is started. This is the process of feeding through the veins and so a central line is placed into a main vein that goes to the heart – normally a PICC line or a Hickman line is used. Then a specific bag is made up depending on a patients bloodwork of what they need of vitamins, minerals, lipids and fats to make up the calories that they need, and then also IV fluids to keep them hydrated. This comes with many risks of infection of the central line and TPN especially can affect the liver and isn’t particularly a great long term solution, so where possible, a person is encouraged to try and keep the gastrointestinal system moving as much as possible and continue with a slow rate of feeds building up to what they can tolerate.

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Feeding tubes aren’t pleasant. They can cause both physical and emotional problems due to a drop in body confidence after a tube has been placed, even a surgical tube that is seemingly ‘hidden’, but we still know they are there which can lead to problems with confidence within relationships too. However lots of people have also learnt to love their extra additions of the tubes because they are quite simply keeping them alive! Here are what some people have had to say about life with their feeding tube, and even TPN!

‘It makes me feel self conscious and I somehow feel guilty although it’s not my fault that I can’t eat. On the other hand, I am proud of myself and grateful for a lifeline like an NG. It has kept me nourished for almost a year. Stopping eating and going 100% on tube feeds has improved my life quality a lot. For some time, my nausea and stomach pain was drastically reduced. Right now I only have an NG tube which hasn’t affected any relationships. Okay, so now about the TPN. TPN is scary, it messes up my life, and I have no wish bigger than being able to return to tube feeds.’ – meandmyspoons (instagram)

‘My feeding tube makes me feel proud, it reminds me of all the struggles and challenges I had to go through to get a safe and reliable form of nutrition, and that I overcame them! It has given me nutrition that I can count on, no more hypoglycemia episodes and less concern about getting the nutrients I need. I’m pretty open about my feeding tube (I wear lots of crop tops etc.) so the people I enter a relationship with are already aware that I have it. My tube kinda acts like a filter to get rid of the guys who aren’t worth my time. When I first got the tube I was hesitant about any intimacy, but once my weight got back up to my ‘normal’, I gained a lot of my confidence back. My rule with the tube when getting intimate is ‘don’t touch it!’ Because there’s nothing like intestinal bile to kill the mood…’ – isabelinvisibleillness (instagram)

‘My feeding tube saved my life. I was at a healthy weight but losing fast and though I didn’t want a tube, I knew I needed one.’ – marieke75rn (instagram)

‘At first I felt very self conscious about my body, but I’ve learned to embrace it and know I’m still pretty. I get all of my nutrition by the tube, I cant successfully eat by mouth anymore. It’s hard when people want to know what it looks like? Especially with relationships. The feeding tube keeps my life going and I’m thankful for it’ – latina_zebra (instagram)

Feeding tube awareness week As feeding tube awareness week 2018 has come to a close, I have decided to show a few of my feeding tubes and now to explain a few things.

[mcors]

WHAT IS SICKLE CELL?...IT'S COMPLICATED!

What is Sickle Cell? This is a question that I’m asked at least once a day. My first thought is REALLY? I mean this is a disease that has plagued millions of people for hundreds of years and no one really knows that it exists let alone what it actually is. After reminding myself of this minor tragedy in human history I often give this answer:

“Sickle Cell is a hereditary blood disorder in which my body produces abnormal red blood cells. When my body begins to over produce these abnormal red blood cells it can be very painful”. Usually, that over simplified answer is enough to satisfy the inquirer’s curiosity and health class is over for the day. Some days I’m content with having a 5 minute conversation about a disease that has had an epic affect on my life in all areas of my life. Other days I just open up and begin explaining the real day to day problems that I have to deal with and the frustration that comes along with it. When I’m done with whichever response I’ve chosen to give in that moment. The response is always some version of the following: “Well, you don’t look sick. In fact you look very healthy to me.” Or “What does the government do to help? Aren’t there programs that can help you? I see commercials for Cancer Centers every day. Don’t they have something like that for you? Sadly…The answer to that question is always “No”. But then again the way that the government sees my illness and how I see it are very different.

The CDC defines Sickle Cell as a group of inherited red blood cell disorders. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle through”. In small blood vessels, they get stuck and clog the blood flow. That causes a depletion of oxygen to that part of the body (keep in mind this is a body in which its system is already operating on less oxygen than a normal one) can cause pain and other serious problems such infection, acute chest syndrome and stroke.

Types of SCD

HbSS

People who have this form of SCD inherit two sickle cell genes (“S”), one from each parent. This is commonly called sickle cell anemia and is usually the most severe form of the disease.

HbSC

People who have this form of SCD inherit a sickle cell gene (“S”) from one parent and from the other parent a gene for abnormal hemoglobin called “C”. Hemoglobin is a protein that allows red blood cells to carry oxygen to all parts of the body. This is usually a milder form of SCD.

HbS Beta Thalassemia

People who have this form of SCD inherit one sickle cell gene (“S”) from one parent and one gene for Beta Thalassemia, another type of anemia, from the other parent. There are two types of Beta Thalassemia “0” and “+”:

Those with HbS Beta 0-Thalassemia usually have a severe form of SCD.

People with HbS Beta +-Thalassemia tend to have a milder form of SCD.

There also are a few rare types of SCD:

HbSD, HbSE, and HbSO

People who have these forms of SCD inherit one sickle cell gene (“S”) and one gene from an abnormal type of hemoglobin (“D”, “E”, or “O”). Hemoglobin is a protein that allows red blood cells to carry oxygen to all parts of the body. The severity of these rarer types of SCD varies.

I define it as Complicated

Sickle Cell Disease is recognized by the United States government as a legitimate genetic disease. Thereby, granting those who suffer from it protection under the Disabilities Act. Therefore, making it illegal for hospitals, workplace and schools to discriminate against us. In addition, we are also eligible for government assistance programs like SSI, SSD, and Medi-care etc. Now that being said just because I’m eligible for these services, it doesn’t mean that it was easy to get them.

In order to automatically be approved for services. Like many before me, I filled out the application for Social Security Disability (SSD). Completed forms with the mandatory signatures, medical records and valid dates. Thus, proving that I met more than one of the following criteria:

1. Produce medical records citing that you have a disease that is recognized by the government as a debilitating illness.

2. Be hospitalized.

3. Be under a specialists/physicians care.

4. Prove that you cannot work due to your health.

After turning over 880 pages of medical records, six letters from my Hematologists and various specialists care for me. Explaining in tedious detail, the discrepancies in my work and school records. I was DENIED! Confused yet? I was too. I gave them everything they said they needed and it still wasn’t enough. I had to prove that I’d suffered from SCD before I was 16 yrs. old. Still not following yet? Let’s try to simplify this, Shall we?

Keep in mind that any person applying for SSD is only required to meet one of the criteria to receive services. The U.S. government recognizes Sickle Cell as a hereditary debilitating disease that patients are BORN with. Thus, acknowledging us as Genetically Handicapped. I was told that since I didn’t apply for SSD when my father died (I was 9yrs. old) or when I turned 25yrs. old and needed my own insurance. I had to show proof that I had Sickle Cell and a lifetime of crisis’, infections, and hospitalizations rendered me disabled and indeed handicap prior to my 16th birthday. So, my family hired an attorney, and scoured the Earth for every medical record, nurse, surgeon and doctor I ever had and went to court.

While at my hearing the so-called court “expert” (cardiologists making a decision regarding an SCD patient) accused me of falsifying lab records. Stating that my hemoglobin of 1.0 was impossible, my records were incomplete because they didn’t have tests and labs for the times I wasn’t sick/hospitalized. Therefore, he had no baseline to compare to. Finally, my favorite” functioning on opiates is actually much easier than people think”. Thus, making Morphine an invalid reason for not working. I won my case but, not after enduring the Twilight Zone cross-examination, insults regarding my medications and having to defend my social life. I mean how could I possibly go to the movies, my little sister’s b-day party, art classes and even college courses, if I’m so sick that I can’t work and I need government assistance? As if, me living my life as normal as possible somehow negates the fact that I do live with chronic pain and it prevents me from working in a traditional job setting.

After the yearlong battle and driving everyone around me crazy, I won. Even though, my story has a happy ending… so far. There are so many SCD patients who don’t know that they could be eligible for programs outside of SSI. Not only that, they don’t know that there are attorneys who will fight on their behalf with no upfront cost. Despite, how much the government recognizes us, as a population in need of their assistance, or how easy it tries to make signing up for these services. We still have to go out of our way to prove why we need their help. Complicated.

Unfortunately, this practice of acknowledging this horrible illness exists and then downplaying, ignoring, or flat out refusing to treat it’s patients is a very common practice in treatment centers, ER’s and hospitals across the country even, the world. Once again, everyone knows that the disease exists. They recognize that it causes extreme pain, attacks come on suddenly and that it’s treated with hydration, IV pain medications and sometimes blood thinners. However, 9 times out of 10 when a Sickle Cell patient goes in for medical care, they are met with negativity, disbelief, and prejudice. Often times the nurses and doctors assigned to care for them were most likely warned and not educated about Sickle Cell while in nursing or med school.

To add insult to injury, when medical facilities/hospital/treatment centers orientate their new staff; Sickle Cell Disease is the primary example used as a training tool on what to expect from “drug seeking” patients. According to a May 2012 study of drug seeking behavior in the ER titled:

The Clinician Impression versus Prescription Drug Monitoring Program Criteria in the Assessment of Drug-Seeking Behavior in the Emergency Department. Predictors for drug-seeking behavior are as follows:

1. Patient requests opioid medications by name.

2. Multiple visits for same complaint.

3. Suspicious medical history.

4. Symptoms out of proportion to examination.

5. Hospital site.

Unfortunately the so-called “Predictors” describe a typical Sickle Cell patients visit to the ER during a Crisis. For example, since I was born with this disease I know that Morphine is the only thing that helps, so far. Like most sickle cell patients my crisis occurs in the same places with little variation. Due to the unpredictably of a Sickle Cell Crisis, I may make anywhere from 1-5 visits to the ER in any given week, month or year. Then, add to that the random infections, ulcers, surgeries, PICC lines and Portacaths. I’m going to go out on a limb and say, I’m sure my medical history is as strange, as it is long.

When I go to the ER I try my best to stay calm. That means no crying, screaming or yelling. I remain very calm and operate on the idea of “Let me help you help me”. Unfortunately, that means that I don’t fit into most people’s vision of pain and therefore, I get labeled as “Not being that sick and/or accused of lying about my pain”. By the time I explain myself, convince the powers that be that I really do need help and I get that help hours have passed. Clearly, going to the ER is a very complicated, tiring and stressful event. That is further complicated by people who allow their personal feelings to dictate the level care they give their patients.

Finally, not only is Sickle Cell a complicated topic when dealing with the government, and getting care in an E.R. but most of all in personal relationships. The Sickle Cell community is largely made up of only child, single parent households. One reason is once a child is born and it’s discovered that they have a hereditary disease. The parents usually make the decision not to have any more children. It may sound extreme but, if both parents have the trait then with every pregnancy they will have a 25% chance of having another baby with SCD. Unfortunately, “normal” marriages have a 50/50 survival rate. Add to that, a child that is incredibly sick, hospital stays/bills and the overall stress and strain that accompanies regular marriages. The Sickle Cell community has one of the highest divorce/single parent household rates in the country. Making the parent/child relationship the first, in a long line of complicated relationships to come. When a child is born with a genetic disease that’s passed on from the parent, there is a mutual guilt that both parties feel toward the other. The parent feels guilty because they gave their child a disease that causes them immense pain that they can’t fix. So, they sit by the bed and do their best to be strong and positive. When they actually are terrified, angry with themselves, and helpless to take their baby’s pain away.

On the other side of the coin lies the child. Who sees through their parent’s happy facade and knows that under their fake smiles lay tears and hopelessness. As the child grows up the guilt doesn’t fade away. If anything, it increases. Simply, because the child wants to go into the world to discover, learn, be adventurous, hopefully start a family of their own, basically…GROW UP. By doing what comes natural, they are seen as being irresponsible, selfish, stubborn, in denial and ungrateful. Why? Not because their parents don’t want them to grow up and be self- sufficient. They just want to control the way they go about doing it. For example, when I went to college I did what every normal college student does in their first year: drink, party, stay up/out all night, procrastinate, get side tracked and discover body art. Looking back what I did wasn’t so bad. In fact, it was quit tame compared to what most college freshmen do to claim their independence. Unfortunately, my mother didn’t see it that way. What I thought of as harmless fun and even a rite of passage if you will. My mom saw as putting my life endanger, stupid, disrespectful and ungrateful. Of course, I saw her as being controlling and crazy. That is until she explained herself many years later.

She told me that she never makes a decision without first asking the questions: “Is this best for Marissa? How will this affect her overall health? Of course, if the answer is negative to either question than she doesn’t do it. For example, when I got my tongue pierced she cut me off completely and basically disowned me. What I saw as harmless piece of jewelry, in a questionable place, as being another form of self- expression. She saw as a life threatening act, that basically threw her life’s work away, with a note reading F*CK YOU MOM. Sound a little dramatic? I thought so too but, not to her. From her point of view I might as well have played Russian roulette. When I pierced my tongue, I’d just been released from a 3 month stay at Cedars Sinai. Recovering from a failed blood transfusion that left me unable to receive any blood products outside of Platelets. Due to expected prolonged hospitalizations, I had a greater chance of organ failure, blood embolisms, and more susceptible to infections in and out of the hospital. Unlike traditional ear piercings, those in other body parts never fully heal thus, leaving small open wounds in the body. According to my mother “You might as well have had a blinking Vacancy sign tattooed on your forehead. To let passing germs and viruses know they’re welcome to set up shop in your body!” All of the years she spent making sure I had the best healthcare possible. Teaching me about my disease and its pathology. Most importantly, she trained me not only to communicate my needs to doctors and nurses alike but to protect myself above all else. By piercing my tongue I’d ignored her life’s work and worst I put myself in harm’s way. Now I not only consider how my actions may impact my health but, how it’ll affect her and anyone else that cares about/loves me.

As complicated as the Parent/Child relationship is…finding and maintaining healthy, positive and supportive friendships and relationships are even more so. First of all, like most people who aren’t patients or related to one, they don’t know what it is. So, the first thing a patient must do is not only educate them on the disease but, train them about their own personal care. Bottom line if one goes into crisis while out with their friends, those people have to know how to take care of them. From the first day I started school every teacher, classmate and their parents knew I had Sickle Cell. They knew my limits, what to look for if I was falling into a crisis, who to call and what to do until I was picked up or taken to the hospital.

When, I was in high school and my friends began to drive that training became more intense, extensive and much more serious. When I was 16yrs old my friend Nicole and I were shopping when I went into an intense crisis that came on quick and with a vengeance. Even though, my mother was only 20 minutes away at home, my hospital was across the street from the mall so; we went straight to the ER. Nicole called my mother and quickly turned to her training to help me. Like everyone else, she was instructed to:1- call Adrienne (or designated person if she was out of town) and my doctor.2- Take notes: Write down when the crisis started, where/how intense the pain was, what pain meds I took how many, what dose and time. Did the meds seem to be working or not. 3- Once in the ER: Share notes with the medical staff and tell them allergies, what medications I’m on and what I take in the hospital.4- take notes on the staff: Their names, what medications they order and when they’re given. Most importantly, what they say/do that’s even remotely unprofessional or discriminatory.

All of this sounds very intense and a lot to put on a teenager. However, had she not been able to handle it, she wouldn’t have been my friend. Let alone someone I could go out with by myself. Thank GOD she was capable! That trip to the ER was the first time I was treated as a lying, drug-seeking teenager. Despite the fact, that I had just been there3 months prior and was treated right away, no questions asked, and with respect. Somehow in three short months between my 15th and 16th birthday, I suddenly stopped being a child in pain and was mysteriously reborn as a lying addict. Neither of us could believe the way we were being treated. First, I was told my friend couldn’t be in the room with me because they needed to see if our stories “MATCHED”. We were being interrogated as if we were serial killers or worst (we ignored them). Then, I was told that I wouldn’t be treated until they were “SATISFIED” that I was actually in a painful crisis. That meant a series of unnecessary, invasive, derogatory tests and questions. For example, I was asked if I was sexually active. The answer was “NO” and I had never been. The doctor’s reply “Well we’ll order a pelvic, just to be sure”. As if that wasn’t humiliating enough, they started quizzing me on everything from what my disease is, what Morphine is and how does it work and why are IV’s necessary for my treatment? To whom I knew on staff in the Pediatric Unit. Reminding me that if I failed their test or refused to co-operate then, I’d be banned from the hospital forever! I was so hurt and shocked I started crying uncontrollably. That’s when Nicole kicked into high gear. She wouldn’t allow them to do the pelvic; she reminded them that I was a minor and that their behavior was beyond inappropriate. Then, she recorded everything that happened and started calling HR and reporting them (while they were still in the room, lol). When my mother arrived they tried to paint Nicole as threatening, out of control and dangerous. Of course they lied about the way they were treating me. Thanks to Nicole we had a detailed written record of what happened and a lot of people got into a lot of trouble. Some were suspended, while others were either transferred or fired. I was very lucky that day to have had her with me. She saved me from being traumatized by a pack of psycho doctors and nurses.

I wish I could say that all of my friends and family trusted that I was really sick. Let alone took me to the hospital, stayed and fought that hard for me. She was 1 of 4 friends in my life that really stepped up to the plate and took care of me. 1 of 3 that never resented me felt that I owed her or blamed me for getting sick. A majority of people I once called “friend”, would stay away from me when I was sick. Then, when I got out they would pretend like it didn’t happen and we would pick up right where we left off. The rest would scold me for drinking and going to parties. Basically, blaming me for not preventing my crisis. Eventually, those people would stop speaking to me in protest. Stating that I was too much trouble to deal with. I’ve been told that I make myself sick and then expect them to drop whatever they were doing to take care of me. Basically, I was a sympathy whore who used a so-called disease to get over on people and make them feel sorry for me. Of course they were right because if I cared about myself then, I would never travel, dance, drink, be up late or even walk in order to prevent being hospitalized. Now that I’m older I have a better understanding of a “Friend “and I choose them more carefully. It doesn’t take away the pain that comes along with being judged and ridiculed by people that don’t even know what Sickle Cell is or how it affects those of us who suffer from it.

If finding and keeping a friend seems like a challenge. Imagine being an adult and trying to have relationship, marriage or children. I’ve only had 2 major relationships in my life. 1 in college and 1 after.

My first date with both of them was in the hospital, lol. They both did their best to support me and care for me. Unfortunately, fear got the best of them and they just disappeared. No breakups. They were there one day and gone the next with no notice. Years after the fact I was told that one couldn’t deal with the idea of me going to the hospital, dying and leaving him with our 3 children and a mortgage? WTH?!?! We never even discussed kids let alone 3 of them. Nor did he ever express that concern to me so, we could have least tried to work through it. The other had a problem with me caring for him when he was hospitalized. He was a deputy and retired from the military he thought he was going to swoop in and save me. Once he realized I didn’t need saving and it become more apparent that he did, he was gone. For the most part it is very difficult to find a life companion when you’re sick. Most people don’t want the responsibility. Others don’t want to risk having children with the disease. Since I know my health is a huge burden. I often found myself going out of my way to be the perfect girlfriend. In hopes that it would off-set the inconveniences related to my health. Complicated, Complicated, COMPLICATED!!!

If you thought the parent/child relationship, friendships and intimate relationships were complicated it’s nothing compared to co-workers and bosses. A large part of Sickle Cell patients having to be on government assistance (outside of insurance) is that it’s very hard to get and keep gainful employment. Since most people are unaware of Sickle Cell they find it very difficult to understand how it affects the people who have it. Often times we are seen as being unreliable because you never know when a crisis will flare up. Or if you will be hospitalized or simply have to stay home for a few days. Due to the fact that we have chronic pain and take large amounts of pain medications. We are often labeled as drug addicts. Most people don’t understand how we’re able to function when we’re in crisis. Once again the idea that one should be in bed if they are suffering from pain that requires narcotics to control comes into play. After all how can someone have pain, pop pain medications and continue to work or do any physical activities be honest about their health? Due to this ignorance we are labeled as drug addicts and often fired. Therefore, many Sickle Cell patients are self- employed and fairly successful. The fact of the matter is most of us having a good work ethic and wants to work. Unfortunately, due to ignorance and lack of understanding often times we are seen as unemployable. COMPLICATED.

Finally the most complicated and most important relationship is the one I have with myself. After all I’m the constant in all of the relationships described above. My thoughts, feelings and actions dictate all of my relationships from beginning to end. How I view myself is the largest factor in all of my relationships. It not only dictates the type of people I attract and allow in my life. It is the driving force in how I treat them and how I allow myself to be treated and for how long. Having chronic illness I have no choice other than to be a leader. Especially, when it comes to dealing with my doctors, nurses in and out of the hospital. At a very young age my mother began to teach me to trust my instincts and standby my decisions. That meant that I not only had to believe in myself but, I had to without question or hesitation tell people what I needed and speak up when they did something wrong. At 2yrs. old my mother taught me to place my hand over possible I.V. site and say “NO!” to the nurse attempting to start the I.V. That was my first lesson in not only guiding my nurses but also in knowing me. As you can imagine having a 2yr. old telling an adult that’s been put in charge of caring for them say “NO” and prevent them from doing their job can be a little off putting. Naturally the nurses thought I was just afraid of being stuck like most people. When in actuality I wasn’t. However, I was aware that for whatever reason (be it I was having pain in that part of the body or I knew that the veins they were looking at didn’t work) I had to intervene in order to prevent a possible disaster and get the medication I needed. That was also the first step in a long line of incidents in which I had to not only believe that what I wanted was indeed what was best for me at the time and convince the doctors and nurses to follow my lead. In actuality I had to have the same confidence, determination and belief that what I wanted was best. Just like a doctor in there but without the schooling and white coat. Doctors are capable of carrying for patients because they know that they have about 5 minutes to establish a relationship with their patient. In which, the patient trusts the doctor enough to follow his lead. Doctors can give all of the orders they want but without the trust of the patient it’s of no use. In my situation I know I have to get the doctors to follow my lead without feeling like I’ve stepped on their toes. The way I do this is by being calm, respectful and educated about my disease and an expert on me. Just because I’m more than capable of caring for myself and teaching everyone in my life to the same. There are times when I just want to forget the 37 yrs. of experiences and training that has made me who I am. I find myself wanting to fade into the background and allow everyone else to make decisions on my behalf. I get tired of having to educate people who have been to medical school about my disease. It’s very frustrating to not only have be the patient, my own advocate (and other peoples too) but the educator, doctor and nurse. On top of all the other hats I wear daughter, sister, God mother, cousin, niece, friend and sometimes therapist. When I get overwhelmed and I want to stop all of it. So I can just walk the earth like Caine in the Kung Foo movies. Then, I remember that I was put on this earth for a reason (I’m still working out the details) and that roaming the planet trying to find myself is a luxury I don’t have. COMPLICATED

More than Sickle Cell