My Journal
I have been wanting to post an entry about subcutaneous IV ports for some time, but just haven't gotten around to it until now. First of all, let me explain what a subcutaneous IV port is and for what purposes it is used. Subcutaenous means "under the skin", so a subcutaneous IV port is an intravenous access point located underneath the skin. IV ports are used in patients who require permanent access for IV medications. Cancer patients often have ports for use in chemotherapy treatments.
I have never had the best veins. Nurses have always told me that they tend to roll, which makes blood draws and IV placement difficult. When I started having symptoms in 2010, my out-of-control pain flares made frequent emergency room visits necessary. I always dreaded getting stuck for the IV, because more times than not, the nurses had to stick me multiple times in order to get a vein. As time went on, my veins only got worse. I told my doctor about the horrors I endured and she said that I may need to have a port installed. A solution that meant I would no longer have to suffer endless poking and prodding? Sign me up!
I went in for the outpatient procedure which took about 45 minutes. When I left the hospital, I had a little bump under my skin on the left side of my chest. The incision smarted for a few days, but it wasn't too bad. (Especially considering the kidney pain I have to deal with, a little incision was nothing - piece of cake!). The first few times my port was accessed, it did hurt, but it was much quicker and easier than the alternative. The more my port was used, the less it hurt. I was so relieved that I didn't have to worry about painful sticks and veins blowing, which consequently meant even more sticks. I am so very grateful for my little piece of hardware! It makes dealing with LPHS a little bit easier.
If you are dealing with a chronic illness that requires frequent IV access, talk with your doctor to see if you would be a good candidate for port placement. It has been an absolute blessing for me!
Take care!
Ali
There are many women, from different points in time and walks of life, that I admire. As an artist, I enjoy drawing portaits of these various women. My most recent piece has Marie Antoinette as its subject.
Most people know that Marie Antoinette was the Queen of France from 1774 until 1792. She was famous for her extravagant spending, wardrobe and hairstyles, which garnered her the nickname "Madame Deficit" from the struggling Parisian populace. The late 18th century was a difficult time for the people of France. Food shortages, specifically bread, plagued the majority of the citizens and incited resentment of the priveleged monarchy. In an effort to influence public opinion, rumors were spread that the Queen, in response to the plight of the starving citizens, said "let them eat cake". This greatly angered the people who believed either that the Queen was so out of touch to think that the poor would have access to a delicacy like cake, or that she was simply cruel and uncaring. The truth is that Marie Antoinette never uttered that phrase. Many untruths about the Queen were circulated during this time to fuel the fires of insurgency. King Louis XVI and Marie Antoinette were removed from power and imprisoned along with their children, Marie-Therese and Louis-Charles. The Parisian mobs, so consumed with hatred for the royals, sought to tear them apart. The Queen's suffering and anguish is best explained in her own words. "I was a queen, and you took away my crown; a wife, and you killed my husband; a mother, and you deprived me of my children. My blood alone remains: take it, but do not make me suffer long."
It is easy to view her as simply a shallow caricature, but if you take a closer look you will find a strong, courageous woman.
I documented the progress of the piece in photos, with the finished product at the end. I decided to turn those photos into a slideshow. I am hoping to offer for sale prints of my art here on the website in the future. When the time comes, I will make announcements on social media, so stay tuned! I hope you all enjoy it!
Take care!
Ali
When I was young, I never understood why Good Friday was called "Good" or why the crucifix was one of the most common and beloved images of Our Lord. I couldn't imagine why anyone would have good connotations with the suffering of Our Savior. Now that I'm older, and especially after becoming Catholic, I understand. While the agony Our Lord endured is horrible and not something we like to think about, the purpose of it and the result are beautiful. Jesus humbled Himself by coming to the earth in the form of a human baby and living amongst imperfect people in an imperfect world. At the age of 33 He suffered on the Cross and died so that, upon our deaths, we may hope to join Him in Heaven. Isn't it wonderful to know that someone loves us that much? Whenever we look upon the image of Christ on the Cross we see His suffering, but more importantly, we see why He suffered. By dying on Calvary, He won for us victory over sin and death. That, my friends, is very good indeed. Happy Easter to all!
Much love and God Bless,
Ali
The ASMR Phenomenon
I recently watched a segment on Good Morning America that I found very interesting. The subject of the piece was Autonomous Sensory Meridian Response, or ASMR, as it is more commonly referred. ASMR is defined by Wikipedia as "a perceptual phenomenon characterized as a distinct, pleasurable tingling sensation in the head, scalp, back, or peripheral regions of the body in response to visual, auditory, tactile, olfactory, or cognitive stimuli." There is not much that is known scientifically about this modality, but it has shown to be effective as a relaxation or meditative technique. Many insomniacs and anxiety sufferers have found relief thanks to this therapy.
In the GMA news segment, they featured a woman who has her own YouTube channel where she posts ASMR-specific videos. Maria is an ASMRtist, or one who employs techniques to elicit or evoke the ASMR response in others. These techniques include but are not limited to whispering, tapping, flipping pages and roleplay. The sound of brushing hair triggers the tickling, tingly feeling in some, while roleplay situations such as getting a haircut or makeup application work for others. Her channel, GentleWhispering, has many videos posted from which you can choose.
When people hear about the whispering and role-playing videos, some may believe that they are sexual in nature. In actuality, nothing could be further from the truth. Remember when you were young and your mother would read to you before bed? Think of how it relaxed you and always seemed to lull you to sleep. Well, this is just like that.
I am going to be experimenting with some alternative therapies to see if there is anything out there that can provide relief from the pain of my LPHS. As I try different things, I will write about my experiences here in the journal. I happened upon ASMR quite by accident, but I am very glad I did. It has helped me to relax and fall asleep, when before I struggled many nights with insomnia. Maria is one of the best ASMRtists out there and I would encourage you to check out her channel on YouTube. At first it may seem a bit odd, certainly different, but if you give it a chance it may just pay off. I know it has for me. You can click here, or you can go to the Helpful Links page on my site for the link.
I hope you all had a wonderful holiday and a safe New Year's. Here's to a happy and healthy 2015!
Much love,
Ali
When December 23rd arrives each year, it brings with it mixed emotions for my family and I. When I was just 8 years old, my house burned two days before Christmas. We lost everything except each other and our beloved Labrador Retriever. It was an extremely traumatic event that caused many nightmares and paranoias for years. It remains to this day one of the worst days of my life. However, there was a silver lining to be found amidst the rubble.
Very few things were salvagable from the total loss I used to call home. Suddenly, we were homeless and only two days before Christmas. I wondered if Santa would be able to find me. Would we have a Christmas at all? As it turns out, we did. That year we had so much to be thankful for and we were reminded of the true meaning of Christmas. My elementary school surprised my mom, who was active in the PTA, with gifts and household essentials. The church we attended collected items for us, friends from school sent me cards and brought me presents, and our family helped us as well. It was so touching how everyone rallied around us during our time of need.
Presents and gifts are nice, but we all need to be reminded of the reason we celebrate. There is perhaps no greater explanation of the meaning of Christmas than Linus' speech to Charlie Brown in A Charlie Brown Christmas.
" And there were in the same country shepherds abiding in the field, keeping watch over their flock by night. And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid. And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people. For unto you is born this day in the city of David a Saviour, which is Christ the Lord. And this [shall be] a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger. And suddenly there was with the angel a multitude of the heavenly host praising God, and saying, Glory to God in the highest, and on earth peace, good will toward men. That's what Christmas is all about, Charlie Brown."
May you all have a wonderful Christmas, Happy Hanukkah, Happy Kwanzaa and Happy Boxing Day. (If I have inadvertently left out a holiday, I apologize and wish you many blessings also!). Happy New Year to everyone, may we all have a happy, healthy and blessed 2015!
Much love and God Bless,
Ali
On this day in 1949, a pair of twins were born to Barbara and Hugh Gibb. They, along with their older brother, would go on to become music legends. Robin and Maurice Gibb, with brother Barry, formed the Bee Gees. Their beautiful three-part harmony and God-given talents in songwriting catapulted them to superstardom and cemented their place in music history. I could talk about all of their successes and honors, but I won't. Anyone can google them to read their discography and statistics. As good as they were as musicians, they were even better people.
I count myself extremely lucky to have had the opportunity to meet Robin, Maurice and Barry. They were so kind, taking time to sign autographs and take pictures as well as chat with my mom and I. For them, it was a little bit of time out of their day. However, for me it was an experience that I will carry with me and remember fondly for the rest of my life. My story is not unlike many fans who had the chance to meet them. They were truly genuine and gracious. Through the years, I would occasionally send a card or note to Robin. Without fail, I always received something back from him. One year, he sent me a Christmas card from he and his family. One of the envelopes he sent was clearly written in his own handwriting. Maurice passed away in 2003 and Robin passed away in 2012. Today, which would have been their 65th birthday, I give thanks for their lives and remember the wonderful people they were.
Today is the 51st anniversary of the assassination of President John F. Kennedy. It is a day that will live in infamy, seared into the minds of all who were old enough to remember. Just as the shocking and tragic events of September 11, 2001 are to members of my generation, every person knows exactly where they were and what they were doing when the horrific events took place.
I have always been fascinated by our charismatic 35th President and his beautiful family. They represented such hope and vibrancy in a time of great transition in our country. President Kennedy dared to dream of space exploration and did more than any president before him to ensure that this dream would become a reality. Our hopes of expeditions to Mars and commercial space flight are possible because of John F. Kennedy. This is why the NASA space center in Cape Canaveral, Florida bears his name.
President Kennedy's forward thinking and desire for change made him beloved by American citizens, but very unpopular in certain circles. Those who opposed civil rights, members of the mafia, as well as those who were pro-Castro and pro-Communism wanted Kennedy out of power.
On November 22, 1963, President Kennedy and his wife, Jacqueline Bouvier Kennedy, traveled to Dallas, Texas for events supporting his run for a second term in office. We all know what happened that fateful day in Dealey Plaza. There are, however, many theories as to exactly who was responsible for killing the president and why. It is likely that we will never know the whole truth. Every time I watch documentaries which feature footage from bystanders, such as Abraham Zapruder, I find myself hoping that the outcome will be different. Each time, I hope that the car makes its way through the plaza without incident. Of course, my mind knows better, but it is harder to convince my heart.
Let us then remember, not those who were responsible for the ugliness of that day, but the man who challenged us to "ask not what your country can do for you, but what you can do for your country."
Today my grandfather, Bill Bowen, would have been 94 years old. He died at the age of 46 from an inoperable brain tumor. My mom was only 15 at the time, so I never had the privilege of knowing him. However, my mom and my aunt have told me many stories, keeping his memory alive so that I can know him also.
One thing they have told me many times is that if he were alive, he would love me dearly. That is something that I have really held on to, as I was never close with my paternal grandparents. I talk to him a lot because I really feel that he is watching over me, my very own guardian angel.
My Papaw was not only a wonderful father, he was a brave man who served his country in the U.S. Coast Guard during WWII. He saw battle aboard the USS Glendale and also served on board a submarine at one point. He was also very creative and good with his hands, building furniture from wood and other items with metal.
I am very proud to be his granddaughter. Happy Birthday, Papaw.
9-30-55
My aunt and I have a tradition of either calling or emailing each other on September 30th each year. All we have to say is "9-30-55" and we know what that means. It is the anniversary of the day the world lost a legend, the undisputed King of Cool, James Dean. For an actor who only appeared in three movies, his incredible talent made him an icon who has stood the test of time. It is hard to fathom that he has been gone almost 60 years. He will remain forever young.
R.I.P., James Dean
I recently came across a quote from St. Therese of Lisieux that I wanted to share. It's ok if you're not Catholic. Whether you are religious or not, spiritual or not, the message of strength and courage is what spoke to me and is especially relevant to those of us who suffer with chronic illness.
"I realize as never before that the Lord is gentle and merciful; He did not send me this heavy cross until I could bear it. If He had sent it before, I am certain that it would have discouraged me . . . I desire nothing at all now except to love until I die of love. I am free, I am not afraid of anything, not even of what I used to dread most of all . . . a long illness which would make me a burden to the community. I am perfectly content to go on suffering in body and soul for years, if that would please God. I am not in the least afraid of living for a long time; I am ready to go on fighting."
— St. Therese of LisieuxI am in absolute shock over the death of Robin Williams. He was such an amazing person, a force of nature whose comedic genius left us in awe and whose heart endeared us to him. The world seems a little bit dimmer now that he is no longer with us. It is the worst kind of irony that someone who gave so much joy to so many was so sad on the inside.
Depression is something that so many deal with, yet is not discussed due to the stigma that surrounds it. Those with any form of mental malady are so often labeled as crazy. Those who are depressed are told to simply "get over it", as though they had a choice. I know the darkness of depression all too well. When I was in my late teens and early twenties, there were circumstances in my life that devastated me and left me emotionally wounded. I spiraled deeper and deeper, feeling that I was locked inside myself. It felt like I was in a cage, separated from those around me. My mother was so distraught and frustrated that at one point she considered having me hospitalized. I am so incredibly lucky to have such a loving and caring mother. She refused to give up on me and forced me to go to therapy. She would drag me literally kicking and screaming, telling me that it was okay for me to hate her now but I would thank her later. I absolutely do thank her. My therapist truly was a miracle worker for me. I would go into her office feeling despondent and I would leave with a weight lifted. I worked with her and, together with my family and friends, I climbed out of the deep dark hole. I have never been a person that considered suicide an option. Even when I was at my worst, I still wanted to live.
It is difficult for me to imagine feeling so hopeless that I would want to end my life. I have known people who have committed suicide. Their friends and loved ones have emotions that run the gamut from sadness at their loss to anger, feeling that their loved one voluntarily left them behind. It must be agonizing to come to a decision that involves ending your own life. I don't know what that feels like and I pray I never do. There are those who think that suicide is a selfish act. I think that every case is different, people have different reasons for commiting suicide. There are those who wish to spare their loved ones from a terminal disease, not wanting to be a burden. In cases such as Alzheimer's, many patients lose what made them an individual, a lifetime of memories and worst of all, not even recognizing those closest to them. There are those who wish to not only spare themselves, but spare their loved ones so that they may remember the person as they were in better times. There are a myriad of reasons that people may choose suicide. If you know someone who is depressed or dealing with a very difficult situation, try to get them to speak with a doctor or therapist.
After dealing with my situational depression (depression that is triggered by an event), I later dealt with depression that was due to a chemical imbalance in my brain. I was confused at first because there was no obvious cause of my sadness. I went to the doctor and was put on anti-depressants. After a week or two, I began feeling better. I remain on the medication and have not had any problems. It is important, especially for those of us who have ongoing illnesses, to be aware of our moods and any signs of depression. Remember that it is not a sign of weakness to ask for help, but rather a sign of strength.
Take care and God Bless,
Ali
My fingers are still recovering from all of the tweets I sent out on Friday for LPHS Awareness Day! I sent tweets to my followers and to every high profile person I could think of. I realize that most of these people will never see the message, but I will do everything I can to help spread awareness for this disease. I even wrote to my State Senator and The President. Like the saying goes "Shoot for the moon, even if you miss, you will land among the stars." At least no one can accuse me of not setting my sights high enough! There was one really cool thing that came of my efforts. I sent a tweet to Jenna Marbles, who is a comedienne made famous on YouTube. Her videos have a lot of foul humor and foul language (not for children), but if that does not bother you, she is really funny and worth checking out. She has been featured on Good Morning America, has won a YouTube award, has millions of fans and is now following ME on Twitter! What?! I was excited to say the least! The tweet blitz also garnered me some other new followers who have now been made aware of LPHS! In my eyes, it was a most successful day. There were many other LPHS patients from the Facebook support groups who participated in spreading the word on Friday. I was only one small part of the larger whole. The more people who are getting the word out about LPHS, the better it is for all of us. So, congrats and good work ladies and gents!
The icing on the cake Friday was a sweet note and magnet I received from some dear friends of mine. They regularly send me uplifting messages either by email or regular mail. I guess I'm old fashioned, but I love receiving items in the mail that aren't bills! The fact that someone takes that extra bit of time to put pen to paper just makes it more special. I took a picture of the magnet, which is now on my magnetic board above my desk, so I could share it with all of you and pass on the message.
I hope you are all doing well. Please feel free to drop me a line on my Contact page!
Take Care and God Bless!
Ali
I think it is fitting that my first journal entry be on August 1st, which is LPHS Awareness Day. I belong to several wonderful support groups on Facebook including "Living with LPHS" and "LPHS SOS". I have met many wonderful people from around the world who are going through the exact same struggles that I deal with on a daily basis. It is a comfort knowing that I am not alone. I think that being able to communicate with others who understand your situation, regardless of diagnosis or issue, is so very important. Whether we are sharing ideas that help us to better cope with our illness or just being a sympathetic ear when we need to vent after an especially rough day, it is cathartic in dealing with a disease that has yet to be cured.
Since 2011, when I was diagnosed with LPHS, I have been unable to work. However, it has given me more time to devote to my artwork. That is, when I am feeling well enough (which lately has not been that often). I have always enjoyed art whether it be drawing, painting, needlework or carving intricate pumpkins at Halloween. I want to eventually offer pieces for sale here on the website, so that is something to watch for in the (hopefully) near future.
That is all for now. I know that I will not be able to add new journal entries daily, but I will do them as often as I can. Thanks so much for checking out my journal, please feel free to share this site with your friends.
Take Care and God Bless!
Ali
