I am so chuffed that I got to do this! I have been a follower of Sheryl @Achronicvoice for a long time now and am really excited she agreed to let me interview her!
Something I haven’t done before!.
So here it is the full interview:
Interview with A Chronic Voice
Thanks so much for agreeing to do this!
Maybe we could start with a bit of a bio about you. So could you tell me about you and your conditions?
Hello, My pleasure, and sure!
It started when I had a mini-stroke at 14, caused by blood clots from the antiphospholipid syndrome. I developed multiple DVTs and a pulmonary embolism (clot in the lung) at 17 which was nearly fatal. It mutated into Lupus (SLE) when I was about 20, and then I developed Sjögren’s Syndrome, epilepsy, PSVT (a heart rhythm disorder), a mitral valve prolapse which I had to repair via heart surgery in the U.S., clinical depression and anxiety, and more things here and there that required surgery.
Oh my gosh that sounds awful!
Do you have to take many medications for those conditions? And how do your conditions affect your day to day life now?
Yep. My current cocktail comprises of:
1. Warfarin (blood thinner) for antiphospholipid syndrome
2. Prednisone (steroids) – Lupus, Sjögren’s
3. Cyclosporin – Lupus, Sjögren’s
4. Sodium Valproate (Epilim) – epilepsy, depression/anxiety
5. Hydroxychloroquine – Lupus
6. Vortioxetine – Depression/anxiety
7. Escitalopram – Mood stabilizer
8. Calcitriol – Osteoporosis
9. Calcium carbonate – Osteoporosis
10. Maltofer (liquid iron) – Lupus
11. Verapamil – (as and when needed for PSVT heart palpitations)
12. Omeprazole – Because I’m on certain meds
13. Assorted other pills such as painkillers as and when necessary
It affects every day to day aspect of my life – from cooking, exercise, working, social interactions and more. Basically, if you’re in chronic pain or are easily fatigued or brain fogged, you can see how that will affect every aspect of your life.
Wow, that’s a huge list of medications. Have you ever tried any natural remedies? Or homeopathic / diet changes? If so has it made a difference at all?
The problem with antiphospholipid syndrome is that it makes trying alternative treatments or diet changes tricky. I have to constantly worry about blood thinning and clotting, and many super foods mess this ratio up. Even eating one too many salads as compared to normal can be tricky. And stuff like massages – I still go for them because I love it, but I only good when my blood thickness is not too low or high, and I don’t do anything too strong.
I am trying out essential oils and a cheap TENS machine I bought. Not sure if the machine does much. The oils do help relax me a bit.
I also recently tried flotation therapy. Bit early to say if it does anything…but it definitely helps quite a bit with stress relief…which is a big trigger for flares.
I’ve also attempted Ayurveda. While I couldn’t follow the food and supplement regime, I did make some changes to foods I should avoid or eat more of. It also took into account of suitable exercises for your body type and an oil massage which should be removed from chickpea flour. Sounds weird maybe, but quite normal in Asia. I actually think this form of support helped, but you do need to put in a bit of effort. I haven’t gone back to check in a while, so I’m not sure how my pulse has changed (we have 2 types of pulses – one from birth and one imbalanced if any).
Oh, I also tried yoga. It helps some people a lot…they tell me a bit of movement every day helps control their flares. But for me, it was actually triggering them (even the yin classes!) so I stopped.
You will have to keep us updated on the flotation therapy! That sounds really intriguing! I’m a big believer in tens machines as well. I’m doing a review soon on some tens pens.
So as I’ve mentioned I’ve been a follower of a chronic voice for a while now. It was the blog that inspired me to start the thyroid damsel. What was your inspiration to start your blog?
I will…there’s a review on flotation on my blog, and part 2 when I’ve done it a few more times!
As for the TENS machine…can’t wait to hear what you have to say about it! I’m not sure it helps me or if I’m not using it right. I just used it actually…it’s 4:30 am here and having painsomnia 😉 didn’t help though 😉 And wow…I never knew that I’m happy that my blog inspired someone out there! 🙂
I mainly just wanted to get back to my first passion i.e. writing, and chronic illness is something close to my heart, literally 😉 I also wanted to raise more awareness…every little bit counts!
Yes, your blog was one of the first I saw. So, with all the health issues you have. Is there anything that your illness has really prevented you from doing? Or are there any positives that have come from your illness?
It’s prevented me from just about everything I had originally wanted to do as a young person. I would love to be a travel literature writer, the sort that lives in a far out place for a couple years, to immerse myself in their culture, and write about it. I think different cultures are very important to preserve and learn from, perhaps even more so than healthcare, but that’s a whole new topic! 😉 This is obviously impossible with chronic illnesses with the frequent doctor appointments, increased risks and costs.
Apart from that, I can’t really invest my energy into my career either. I have to take it easy and need more sick leave than the maximum allowed in a company. I have freelanced for the past 10 years or so, and it’s a good thing I enjoy that sort of lifestyle. But the field of work I’m in advertizing and web development) is highly stressful no matter where I work from, so I’m looking for alternatives as well.
The positive side to my illness, which I could never have imagined, is that I’m forced to examine myself as a person more closely and to try and understand my self-worth. I also saw a psychologist for a while due to everything that has happened, something I would probably never have done if I were well. My illness taught and is teaching me about acceptance and life in itself.
My last question would be then. What would your advice be to other sufferers with chronic illnesses? What would you like to have known when you were first diagnosed that you didn’t know, that you do now? Is there anything you would do differently?
I wish that I had taken my medicines more regularly. My parents are highly religious and believed that I could be healed if I had enough faith…so I constantly asked, does having enough faith meant I had to completely stop taking my medicines? Taking a little bit showed a lack of faith, right? My mom didn’t exactly encourage me to stop my medications, but she didn’t stop me from not doing so either. I was 14. Perhaps the pulmonary embolism and multiple DVTs I suffered at 17, which changed my entire life, could have been prevented. But who knows, right? At the end of the day, who knows what’s right and wrong, and who knows what will be. We all just want the best for ourselves and our loved ones.
One piece of advice I have is to always seek for a 2nd, 3rd, 4th, 100th opinion if that’s possible if you don’t agree with what your doctor has planned for you, or even because you don’t like him/her or feel uncomfortable. Chronic illnesses are for life, like it or not, and it’s best to find someone you can work with. A partner who will help you navigate life, and not dictate it. After numerous bad surgeries as well, it’s best to find surgeons who actually like their work, and who cares. These are all consequences you can avoid, by working with the right people.
As for what I would have liked to have known when I was first diagnosed…I’m not sure really. The knowledge I have now is all based on trial and error and we all experience symptoms differently. Read up as much as you can, but also be wary of your sources. Not everything that is written online is true and can be detrimental to your health. Listen to your inner voice, usually, he/she knows best.
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