It has been far too long since I last shared my thoughts through this forum; forgive me. I confess it is sometimes hard to write when one is busy trying to process so much change. I have been on Flolan since the 9th of December and have been adjusting to constantly having my pump at my side. At first I was constantly walking off without it, but as this invariably resulted in a painful tug on my central line, I was quickly cured of that habit.
Kristi spoiled me on Christmas day with a wonderful gift: a box full of ribbons, all in the colours I usually wear. The hideous black strap of my pouch was immediately hacked off, and has since been replaced with an array of beautiful ribbons, which I sling over one shoulder to attach my drugs to.
It has not been too easy arriving at university with an oxygen machine, mobility scooter and a drug pump. All the normal first-year anxieties about acceptance, the workload and finding routes around campus felt a little bit worse when I considered all the equipment that I cart around with me. I was lucky enough to have Tayla, my fabulous cousin, staying with us for 2 months at the beginning of the year, and even luckier that she was keen to tag along to some of my orientation sessions.
With her at my side I was able to manage the physical snarls, and now I that I know my way around silly things such as lifting bags on my desk space or finding wheelchair-friendly routes don’t seem quite so daunting. In fact, the Humanities buildings which house my tuts and lectures seem to be wonderfully accessible and I have found I can manoeuvre around campus with relative ease. There is one elevator which is very creaky, claustrophobic and creepy… but, all things considered, I have been pleasantly surprised. Go University of Cape Town (UCT)!
I am currently doing Philosophy, Psychology and English. I want to major in Psych and Philosophy, and have been loving the courses so far! English has also been incredible. I think, however, that I might slow my degree down and drop a course just for now. I will pick all the work up later. I can definitely manage the workload if I push myself – as I did in matric – but the more I think about it, the more it seems ridiculous to maintain a schedule that will tire me out, when there is no pressure or urgency. I’d rather have less stress and be able to focus on the fun of university life.
It has reached that time when we should be seeing evidence of the Flolan working, and I am pleased to say there have been a few small signs of improvement. However, patience is required and we cannot say with certainty that the drug has changed things, especially seeing that I have had a nasty cold, which has stubbornly turned into a chest infection over the last two weeks. To monitor my symptoms is one thing, but to isolate the cause of each rise or dip is nigh impossible. Thus only time, and some more 6-minute walk tests – will tell.
It is hard to believe that it is March already. This year has had a bumpy, confusing start, yes, but overall it has been fun – a time of reconnecting with family and friends and finding new beginnings. There is much more to say about life on Campus, and I hope to share my stories soon.
All my love and gratitude J Jen xx
You are such an inspiration. You bring hope light and inspiration. We are blessed Jenna to know you and be able to access you in this way. Tsheps
Well done Jenna on your perseverance through all these difficulties which faced you at the start of your University career. You continue to inspire so many and we hope and trust that the Flolan will do its necessary strengthening for you. Wishing you a good year at UCT. Warm regards Jenny
Jenna,
You are simply amazing. I first heard about you via Shirley and Jax Dewar, and have been inspired by your courage and attitude ever since.
Thank you for what you are able to do for others, despite your own struggles.
We all wait for you to walk on stage for your graduation…..
Rich
Hey Jen Jen,
This is an awsome start to another chapter of your amazing journey that you are on. I pray you keep the faith in what your journey is all about and I know that God has big things ahead of you and your family,I see it unravelling. We are given what we can handle and obviouly our creator has enormus things in store for you because you are such an ambassador to so many and I think you’re one of his chosen angels!
Hello lovely Jenna- so wonderful to read an update from you – very glad to hear that UCT has seemed quite welcoming to you – and glad to hear that you are finding your way round and starting to have some fun on Campus. Takes me back it really does! Specially Student Union – wonder if thats still there- we spent a lot of time there ! I dont have the words to say accurately how reading your posts and following your story unfolding from afar makes me feel Jenna. In total awe doesnt cut it! You are one amazing young lady and you should be so very very proud of yourself. You have touched so many people with your honesty and bravery , and raised so much awareness of this awful condition. We send you love , strength and hope across the miles. I think of you and your mom and family every day x x x x
Hi Jenna – wonderful to hear about your start at UCT! Every morning you open your eyes, make the decision to conquer the day – you have come such an incredible way… just keep going step by step! Your strength is touching many lives, and your journey is reaching people you might never even meet. We are all praying for you.
Well done Jenna, for posting another lovely, natural, newsy update for the huge number of people out there who are genuinely and deeply concerned. With lots of love and our firm belief in an imminent, welcome and overdue improvement from your Flolan!
jenna, you are an amazing and inspiring beautiful young lady..your courage and commitment is extraordinary, I felicite you enormously. I do not know you, but I know Olivia Otten and through her I have seen some of your trial and tribulations. i live in France where my partner and I have a small family run hotel and restaurant…if you are ever able to travel with your family to France I would adore to meet you. Keep going onwards and upwards in your life and at UCT..but take baby steps, you need your strength and energy, and as you say there is not rush. I know you will succeed at university and continue to get huge enjoyment and love in your life. love and courage Lucie
Dear Jenna/Gabi,
I read your article in the Discovery magazine and wanted to thank you and your family for sharing your story. As I suffer from a rare condition called “Marfan’s Syndrome” I know all too well how hard it is to live with a debilitating condition. For years, there has been a struggle by various international organisations to build awareness for the condition and even now I still get strange looks from doctors and even specialists asking me “You have what?”.
Obtaining health support for rare conditions is even harder and I have to commend you and your mom for having stuck to your guns and gotten the medical and financial help that you so desperately need. Medical aids only have special rules for a very select few conditions that They deem worthy, making it hard to get cover for rare conditions. This is especially true for syndromes whose multiple individual symptoms defines it and as is the case in Marfan’s, is what makes it so dangerous. Even if they concider it, they still only rate it in terms of life-threat and not quality of life.
I know that a long and hard road still lies ahead with many obstacles, but I am rooting for you. With the support structure you have in your family, you will certainly reach the top in whichever goals you set for your self. Without the support, love and understanding of ones family, any one will falter, we just notice and appreciate it so much deeper due to our “unique” situations.
You have all the time in the world. Do not let your self get demoralised by the pace of the world, nor let the world dictate your pace. We run the race at our own pace.
Take care and stay strong.
P.S. I think it’s great you are studying psych, so many people with rare conditions desperately needs help with the mental strain that it puts one under as well as the lack of understanding that results in diagnosis of a generic nature.
Rona
Hi jenna
U are truly a strong, positive and an inspiration to me. Definitely blessed
With a loving and supportive family.Congradulations on your studies.
Am proud of u,your story really interest me as I to have been diagnosed
With a rare lung disease called Alveolar Pulmonary Protiensis,there is
No medication only treatment called a “Lung Lavage” and am current
On home oxygen,Big ups to us “survivors”,always remember God is with
U,stay blessed!!
Hi jen
You have given so many people hope. you have ran ur race with such faith and bravery. Keep up the fight u made it.
God bless