After three years of fighting the Firestorm that has raged through her body as a result of Graves Disease – Hyperthyroidism, Jess, my amazing wonderful 19 year old daughter has finally started to feel better in the past two months.
Jess has more energy, and she feels stronger emotionally and spiritually than she has since she became ill in 2012… she is losing some of the 30 kg weight gain caused by the medication she has had to take… her skin has improved dramatically, her hair is silky and manageable and she is more energetic and happier than she’s been in a long time.
The constant 24 hour a day fatigue has lessened… and Jess has been able to complete her daily scripture reading… spend 6 to 7 hours a day studying for her exams in October, craft, learn to sew… and even shop, cook and socialise. *Smile*
Despite so many side effects of the medications that Jess has had to take… migraines, headaches, nausea, almost daily bouts of diarrhoea, fuzzy brain, inability to concentrate, memory loss, constant fatigue, insomnia, physical shakiness, inability to make decisions, emotional roller coaster lows, with very few highs or even mediums… we are grateful for the side effects that Jess hasn’t experienced like complete hair loss… nail loss and the permanent deadening of her nerve endings.
We have even been looking forward to Jess having driving lessons, as even though she passed her learners license 18 months ago, operating machinery is contra indicated… and Jess behind the wheel of our car has been one of the scariest experiences of my life. *Smile*
Even though I realise there were many reasons why Jess delayed having her last lot of blood tests… our broken budget and decimated finances… our car being in for repairs for a month, our long planned long week-end away to celebrate our 27th wedding anniversary in Johannesburg and the Drakensberg, which we had to cancel anyway, the drains getting blocked and overflowing from a full septic tank, (people don’t tell you about the drama involved with that when they are spouting the virtues of septic tanks… or of course the mess… and oh my gosh the smell… even growing up in the bush, we never had such drama, or such smell as we had with our recent septic tank experience… or such expense).
The vibrant happy Jess that has laughed and embraced life in recent weeks has been a joy that has filled my heart to overflowing… and a long awaited answer to so many prayers
So when Jess did finally have her blood tests a month ago, and her specialist increased her NeoMercozole from half to one per day, we rode the increase in side effects for the three weeks before her doctor’s appointment with hope in our hearts.
The we is not a typing error… as I believe Jess would agree I have shared the burden of her illness, even though from a different perspective… and at times it has been more difficult for me, as I have seen more clearly the effects of this disease… and the Firestorm that has raged in her body… just as a fire blazes through the bush without respite or hope of being able to extinguish it.
Even though it’s been a week… we are still trying to accept and cope with the results of Jesse’s last appointment with her specialist. All those good things that Jess has enjoyed the past few months… are not as a result of her thyroid calming down and returning to normal, or the dissipation of the Firestorm as we faithfully hoped… Which would mean that her thyroid and immune system were no longer at war… and who would have known that a strong immune system could cause so much havoc? *Sigh* Not me.
What it does mean is that her thyroid is in hyperdrive, her immune system is proving to be a worthy combatant… her hormones and adrenaline are on the increase, her heart rate is accelerated (and not just as a result of her first date *Smile*), so Jess has to go back onto beta blockers to protect it from the horpedoes and fiery arronalins like a force field keeping her heart safe.
And although that may sound lyrical and optimistic, my heart ache is real… and despite the shedding of too many tears, my eyes are still blurry and tearing as I write this.
I am grateful that Jess is alive, that she has an incredible albeit an aloof specialist who warms so animatedly towards her, and I am even grateful for the medication that causes her so many horrible side effects because it does help her to function while her body struggles to survive the Firestorm in the hopes that it will dissipate and not burnout which would then mean her thyroid would die…
After three years of being ill, despite her struggle with depression and having to choose to be happy and optimistic in every moment, rather than it being her natural disposition as it was before she became ill, I have seen Jesse’s faith deepen beyond measure and her courage strengthen her when that was all it seemed she had… I find myself without answers to the unfairness of life.
Just last night, Jess expressed anger as she has never done before… sharing how frustrating it is to see others her own age and in their twenties …smoking, drinking alcohol, consuming copious amounts of energy and caffeinated drinks and even indulging in so called “recreational drugs” without any apparent consequences… especially to their physical bodies.
Living life to the fullest with sometimes abandoned carefree enjoyment.
Ten days ago Jess drank a cup of Mountain Dew without realising that it contained caffeine, and she is still recovering for her mistake and lack of diligence.
Just one cup!
I understand Jesse’s anger, as I struggled with my own through months last year, the only result has been exhaustion and feeling almost constantly overwhelmed. Frustrated with our budget and finances that I can no longer juggle without dropping a few balls at a time… being in more debt now than we were when we had our own home with a bond, and a financed car. With nothing tangible to show except mounting debt and no assets.
Life is hard… and challenging… and difficult… and the past seven months have been the most difficult.
And also the most blessed.
When I made the suggestion last year to get a mornings only job to earn the extra income we needed, despite her strength and courage, the thought of being without me during the day caused Jess deep concern, and my husband strongly encouraged me to start working at home again.
Which I have… this website being just one of my ‘projects’ …*Smile*
(The others will hopefully ensure I can earn a monthly income).
My one challenge I have to embrace this new creative and writing space, more disconcerting than I would have expected considering the dichotomy I face.
I love sharing almost as much as I love writing… however in the past decade and a half, that sharing has been about my success, my triumph, what I love and what makes me happy.
Right now, to share honestly from my heart would mean to tell you about Jess, and Graves’ disease, and the Firestorm that rages in her body and the side effects that she struggles with, and her grouchiness as a result, and to admit that I know everything I have written isn’t medically correct in terminology even if it is all true… and to share with you that it is now the third year that Dave hasn’t had an increase at work, and that he lost his overtime pay… and that despite that we are grateful because he still has a job, because many of his colleagues no longer do because of the last round of retrenchments… and that we are grateful for the company vehicle and petrol that has been provided recently, because some days, (three weeks of some days) that’s the only reason Dave can go to work, because we are so financial broke… however, that we aren’t broken simply because of our faith and the blessings that have come… unexpectedly… miraculously.
I would have to write about how often I kneel in prayer, sobbing my heart out, because even the answers I thought I had no longer work… and that in quiet moments when I fear the most… especially my own lack of faith and hope like right now, I feel gently embraced and warmth enters my heart… and I feel loved perfectly, unconditionally.
I would have to share that I feel humble enough to know that I need help and support to make our business successful, and our new ventures succeed and flourish. (And that I’m ready to ask for that help.)
I would have to admit… that we aren’t always the happy loving family we want to be, and that I especially get frustrated and overwhelmed, and that my temper has first place on the family totem… and even though I have learnt a huge amount of control in the past few years, my patience is still limited, my emotional ups and downs still mercurial, and that even though I don’t often swear vocally, my mental capacity is still unbounded, and whilst a good portion of the world would not consider that a vice, I do, and I still struggle with it.
I would need to share that there are days like today when I don’t want to get out of bed, and I don’t want to do the million chores needing to be done, and I don’t like working and I don’t want to work… and that I would rather Dave earn all the income we need so I can write, and sew, and garden and dive into the dozens of creative projects that aren’t completed… and I could indulge my series obsession and watch 13 episodes in one day.
Then I get out of bed, and I shower, and I push my inner child tantrum aside, I turn on my aging, temperamental menopausal computer …and after patiently wooing and softly charming, I’m inspired with creativity and intelligence that I know I haven’t learnt myself. And I love my work and sometimes even I go wow in humble gratitude.
I would have to admit that I’m overwhelmed by life, overcome with doubt, that my house is in absolute chaos as I try and organise it for the third time this year, that the garden is a nightmare rather than my happy place at the moment, that six dogs are too many even if they aren’t all ours and we definitely can’t afford to feed them all.
That I say yes when I should say no, and that I say no when I should agree.
And that despite the chaos and confusion, debt and frustration, heartbreak and aching disappointment that fill my life right now… I am so grateful that I have a husband who loves and adores me and supports my crazy ideas …even the ones that fail, and never says I told you so …before or after… and doesn’t agree with me when I do, who I love more and more with each passing year.
I am grateful for our two sons, who seem to have a tandem juggling act of success and failure, mishaps and misadventure… and a peculiar determination not to grow up and be responsible… yet I have learnt some of my greatest wisdom from them… and they are the reasons I started writing late at night and early into the morning while waiting for them to come home. (And the reason I started publishing and sharing so publicly.)
I have also received the most profound spiritual guidance and inspiration in answer to my prayers about them.
Just recently I said a prayer asking for Jordy, our 23 year old son to find a decent, good paying job… it was similar to other prayers although much more heartfelt. That same day Dave phoned to tell Jordy he had a job. *Smile*
Yesterday, Jess and I fasted… Jess for help with her studies, and for help with the increase of her medication and improved health… and me for our finances and Jesse’s health.
I know that despite my struggles, I feel loved and blessed… and that a few weeks ago in a quiet peaceful moment, I was blessed to feel that “this is only for a season, Mands” and that as long as I believe there are blessings in every moment, they’ll manifest unexpectedly when I need it the most.
Be happy… be grateful… be inspired… be awesome… be love.