Psoriasis, a pain in my @ss.

At any given time, I’m walking around with scales, like a snake in shed.

One of my least favorite topics of conversation is back in the Hollywood headlines this week after a fellow sufferer has defiantly stood against the frustration that is Psoriasis. Kim Kardashian has made it public fodder that she is a Psoriasis sufferer and has backed this up with photographic evidence of the unsightly red patches that dot her legs and torso. Now I may not be the biggest Kim K fan and I’m certain they’re not rushing to develop a Psoriasis Kimoji, but I have to commend her for making public a condition that 3% of the global population suffer with quietly at any given time. Kim has said that she has learned to live with Psoriasis and no longer bothers with unsuccessful attempts to hide the blotchy redness on her body, a fight that I know all too well. Sadly, unlike Kim, I haven’t learned to ‘live with’ this disorder. I’m not certain that you ever truly do.

 

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Psoriasis does not discriminate. You are never too rich or too poor for the plaques to take over your life in the most physical and mental ways possible. In the U.K., 2% of the population has to manage varying degrees of Psoriasis severity on a daily basis – I am one of those 2%. I am a Psoriasis sufferer and yes, I suffer.

 

I was about 11 years old when a mistaken case of ringworm was finally diagnosed to be Psoriasis. Psoriasis is NOT just a skin condition; the effects are not purely aesthetic. The disorder is not curable. The presentation can be horrific. No matter the severity, this chronic disease affects its sufferer’s daily whether it is in the physical or in the lesser-noticed mental capacity. While everyone was dashing out into the South African summer sun in the sexiest bikini, I was donning the full-length costume and cover up. Hiding my skin, hiding my body. Hiding the lesions that were once mistaken for leprosy in medieval Europe and required clapper ringing on arrival.

 

Psoriasis is an autoimmune disease, often thought to be genetic, which is triggered by external, environmental and internal factors. It presents itself as red, flaky, crusty patches on the surface of the skin as a result of increased production of skin cells. In a healthy, non-Psoriasis suffering person, skin cells are made and replaced every 3-4 weeks. In someone with Psoriasis like myself, this process is sped up to 3-7 days. The new and dead skin cells are piling up faster than the body can naturally shed them. At any given time, I’m walking around with scales, like a snake in shed. Stress, diet, weather and more stress are all causes for my Psoriasis flare-ups. I know the triggers; unfortunately the result may only arrive a few months later.

 

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Alas, not much can be done for the complete removal of Psoriasis. As mentioned, Psoriasis cannot be cured, though the symptoms can be managed. Other than being unsightly, Psoriasis can also be quite itchy and it is important not to scratch the plaques to the point of a bleed. What is important is to ensure that treatment is followed to make life as easy as possible for yourself; to manage this condition so that Psoriasis does not dictate your life – easier said than done, I know. Psoriasis can be treated with a range of topical ointments, light therapies and herbal remedies but no matter the product, it never entirely goes away. Just look at the money Kim K has? Even she can’t solve the problem.

 

The most difficult thing about having Psoriasis is dealing with other people’s perception of the disease. It is important to note that Psoriasis is NOT contagious; you will not get it from sitting next to me. If you do, it’s large in part to your genetics and less to do with my skin on yours.

 

I spend a lot of time trying to explain to others that I don’t have eczema however similar the presentation. I also have to explain that I don’t have dandruff, despite the large white flakes falling from my head. (Flashback to the drawing scene in ‘The Breakfast Club’, I’m not making it snow!). I don’t wear shorts as my black sofa’s are white and flaked after sitting on them when I do, I can’t shave my legs as regularly as I would like as a blade on a large Psoriasis plaque is asking for trouble, I can’t raise my arms above my head as my armpits look inflamed and no matter what foundation I use, my skin always looks too dry and flaky as I attempt to cover the big red patches on my forehead. Getting tattoos can also be a little bit tricky sometimes as after a new tattoo, my skin is likely to break out with new Psoriasis plaques (thank you Koebner phenomenon).

 

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Living with Psoriasis is a daily struggle for the self-esteem; it is no wonder that depression and mental illness are closely linked to this disease. I look at my body and I am disgusted as the flaky white patches worsen with the dry, cold winter approaching. To me, my Psoriasis is severe and debilitating and sometimes can be the reason that I don’t want to leave the house. I only have to Google about other sufferers to see that my situation is not nearly as bad as it could be. There are people who have far worse cases than I do… that should make me feel better. It doesn’t. It isn’t fair. Why do any of us have it at all?

 

I was hoping to be a little more positive in this post but as I wrote, I felt myself getting more and more frustrated with my situation (combined with the other medical issues I currently have going on). I looked in the mirror and another red mark has risen on my cheek, I looked at my torso in the hopes of taking a picture but was horrified at how much worse it’s actually gotten. After all of this, I am just angry and fed up. It just isn’t fair.

 

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World Psoriasis Day is coming up on the 29th of October and now more than ever I’m hopeful that a cure will be found, that something will be done to get rid of this awful disease. Psoriasis may not be one of the most talked about diseases but it’s definitely one that needs more of a conversation. Let’s talk about it, let’s support each other and let’s recognize that this is a chronic illness that needs to be acknowledged as a disease we shouldn’t have to just ‘deal with’. Kim K or not 😉

 

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You can get more involved with Psoriasis in the UK by donating to the Psoriasis Association and reading more about the treatments and advancements in Psoriasis research.

Dear Diary – Human pincushion again (11/10/17)

I would choose a lifetime of pain and suffering in the company of my children and family, over death or stroke any day.

I thought I had reached the epitome of metal sometime before 7am this morning, I’d gone from dying my hair to dying my blood! Alas, the blood dying was merely for the purposes of an abdominal CT scan and by 4pm in the afternoon I was shedding bucketloads of tears, being forced to make a rushed choice between pain and … well, pain.

Today has not been my finest day, in fact, I don’t recall a time in my life when I have ever felt as tested as I was today. You’d think that a bold statement considering the situations I’ve been dealt over only 32 years on this planet but I stand by it. In fact, I am now certain that the biggest test in life is one that will challenge every fibre of your being, one that forces you to choose between health or death. Dramatic perhaps? Not entirely, this was my afternoon.

It was 2am this morning that I woke with the most unimaginable leg and groin pain. Having been diagnosed with a DVT (Deep Vein Thrombosis) a little over a week ago, I was concerned that I had further complications which, when left unchecked, can lead to certain damages to the body. I woke up my husband and asked him to take me to A&E, we were not past this hurdle yet.

On arrival, I felt like I was reliving the story I’ve told for days on end since waking with a swollen leg last week. I was quickly taken through where the most amazing night doctor made the call to push a CT scan through on my abdomen, she feared a possible bleed surrounding the area or even a septic clot. After the scan I was moved from the emergency department into the AMU (Acute Medical Unit) and this is where I waited to hear my results.

Dr Tim saw me fairly early this morning, approximately 9ish. He was pleased to tell me that there was in fact no bleed or sepsis on my clot so that was good. Unfortunately, there was something far more sinister revealing itself on the scan…

The CT scan revealed that I had indeed presented with an Iliofemoral DVT (a clot that extended from my femoral vein into my iliac) but also, I had Inferior Vena Cava (IVC) clotting as well. The scan showed that there were already existing Pulmonary Emboli (PE) on my lungs and not much left by way of blood flow in this doomed vascular system of mine.

It was a blow to the gut, despite all of the acronyms I knew full well that this was just not good. I was working with a blood clot here that reached from just above my knee to just below my kidneys, threatening the very integrity of surrounding capillaries, I didn’t know how to fix this. I just didn’t know the way forward.
Turns out, Dr Tim wasn’t too sure either. He went off to seek counsel of his colleague and I sat waiting impatiently, doing my best not to fall asleep.

A few hours later, post lunch and some sleep deprived snoozing, Dr Tim came back. He reconfirmed everything seen on the scan and discussed a procedure with me to attack the clot from the inside, directed thrombolysis. It sounded like a good idea at first, the thought of going in by way of a catheter and releasing medication to thwart this foreign body in my veins. The process would reduce the risk of post thrombotic syndrome, annihilate the clot and allow my inferior vena cava some rejuvenation for the rest of my days. Of course, some risks were involved but I was advised they were minimal and the choice would be mine to make. Dr Tim sent Dr Matthew over (consulting radiology specialist) to discuss this process with me and my mind instantly changed.

Dr Matthew outlined the choices available to me and the risks involved. The reality is that the condition I have, IVC thrombosis, was one that was not often seen for this treatment. My clot also ran from below the groin (above the knee) instead of excluding the thigh completely, thus giving us less of a chance for efficacy of this procedure.

And what were the risks? Well, despite being small, the risks included death (PE), stroke (bleeding on the brain), internal bleeding and kidney failure.

“So, Mrs du Toit, I’ll give you 10-15 minutes to think about it, however time is of the essence as we have almost reached our 2 week window period for a higher success”. End scene.

In the 3 seconds it took for the doctor to turnaround and leave, I was sobbing into a box of tissues knowingly provided by the attending nurse only moments before. I was being asked to choose a possible lifetime of debilitating pain and swelling versus a near fatal procedure with a low chance of success but if successful, life could return to normal.

You may think it’s an easy choice but I can assure you, it wasn’t. All I could think was that I hadn’t even seen the girls today and the doctors are wanting to do this procedure within the hour. What happens if the worst scenario is realised? What happens if I die or stroke on the table (a story that the doctor did actually give me as a risk comparison) knowing I never had the chance to say goodbye to my children?

For 20 minutes I sobbed and mulled over all the risks and benefits in mental lists in my head. Not only was I being asked to make the decision (as best educated as I could be with the 3000 questions I had asked), I was being asked to make it now. As you all know, don’t tell Shevy what to do or when to do it.

Dr Matthew came back and I told him I would not be going ahead with this surgery. Simple as that. As difficult as this decision was, it was also easy.

I would choose a lifetime of pain and suffering in the company of my children and family, over death or stroke any day. 

As quickly as the offer presented itself, so was it removed. The doctors agreed that there was no wrong decision and either way, the treatment would do all it could do, only I’ve opted for a slower (more painful) route. Home I was sent, armed with Heparin injections, morphine for pain and a lifetime prescription for anti coagulant medication. This is my new life. So mote it be.

I spent most of the day questioning the cruel joke the universe is having at my expense, feeling sorry for myself and wounded. That faded quickly when I walked in the door of my home and normality resumed, the perils of the day quickly under rug swept in favour of what was for lunch, who was played with at school, astounding achievements and goodnight hugs.

I know I made the right choice, I chose life. Albeit a tricky, painful, unsteady one with many speed hurdles yet to come… but if I can do something in life that doesn’t deprive my children of time with their mother, I’m winning.

Human pincushion

No, this is not a blog on piercing and body modification (I can assure you, that’s the blog I’d rather be writing). Instead, it’s the tale of how I’ve become a pincushion in 2017.

I can confidently and proudly say, I’ve never broken a bone in my body. Not one. A few years ago, before hospitals and surgeries took over, that was my claim to fame! I’d had operations before but nothing I felt was anything more than routine, I’m learning in the UK that C-Sections aren’t actually routine so that statement is null and void anyway. I had my children, via the sunroof, that was the sum total of my time spent in hospital.

In 2013 (I think), after spending many days in the dentists chair, I had oral surgery to remove most of my teeth and pack bone into my gum. That was (what I thought at the time), a pretty big op. I was operated on in a day clinic, out same day and the recovery was fairly speedy. Much to everyone’s irritation, my verbal diarrhoea was back with a vengeance and paired beautifully with my shiny new teeth.

I have always thought that I have a high pain threshold, this is evident in the long hours endured in the tattoo chair and voluntary piercings despite my fear of needles. Nothing could have prepared me for the medical nightmares I’ve had to endure since I’ve been in the UK – Thank goodness for NHS!

In 2016 I was diagnosed with endometriosis and polycystic ovarian syndrome. After a year long fight for funding, monthly injections and multiple doctor and specialist appointments, I finally had a hysterectomy and bilateral oophorectomy in March this year. Despite having two past Caesarean sections, nothing could prepare me for the recovery time after the hysterectomy. I was (am) older, this took longer, other aches and pains arose and for 8 weeks I was held up in bed trying to remember why I made the decision to have this drastic surgery in the first place.

Post hysterectomy and a few months down the line, my body started to positively respond to the HRT’s that I take daily to prevent an early, medically induced menopause. I was feeling good, my body was returning back to normal (barring a few extra kg’s) and life was looking up, I thought that at the age of 32, my serious medical concerns were behind me.

Apparently, 2017 had other plans.

In September I flew out for a brief stay in Johannesburg to join my sister as her matron of honour for her wedding. It was a beautiful wedding, a gorgeous day and it looked to be an even wilder reception. For everyone else. If you’re Shevy, you stand up (pre dancing) and make your way to the dance floor and your knee decides it has other ideas. I took a step and my knee couldn’t bear any weight, it buckled beneath me. Before dinner was even over, so were my MoH duties and the next 48 hours would be brutal.

At breakfast I nurtured my knee ‘egg’ with an ice compress and hobbled around before getting my bum on a plane to get home. On arrival back in the UK, I called my GP immediately and saw him the same day where it was ascertained that I had torn an MCL ligament in my right knee… nothing too bad, some rest, some Naproxen and a knee brace would have me right as rain in 6-8 weeks.

Think again.

Apparently a combination of a short, long haul trip only a month ago combined with a knee injury and prolonged use of the same HRT that has been making life bearable have me at the doctor yet again yesterday with a suspected DVT. I woke up on Sunday, my entire leg was blue and swollen and my groin was unimaginably painful. I gave in and yesterday went to the GP where she immediately sent me off to A&E (Accident and Emergency, not Anything and Everything as the posters mention) and I spent 7 hours being pricked, poked, prodded and pushed while they tried to figure out what was wrong with me. After a few more Dr’s, a whole load of blood tests and a special appearance by an orthopaedic surgeon, I was asked to come back today for the final scans and testing.

I’ve just gotten home from being at Royal Berkshire all day and between the DVT clinic and the ultrasound room, it’s been confirmed that I have a DVT in my femoral vein (possibly up to my iliac) with possible clots in my lungs. It sounds worse than what my body was trying to do, haemorrhage a foreign body that decided to take residence in my pelvis and block blood flow in my leg. After a morning spent with one of the most honest and supportive nurses, I left feeling positive about this situation and ready to take these anti-coagulation tablets to stop the clotting and let my body break it down so I can get back to regular programming.

What I can’t seem to shake is the feeling that the universe is trying to tell me something and it’s taken to shouting and screaming now so I’ll listen. 

As you can see, I’ve had my fair share of medical experiences (car accident excluded) and this journey is far from over but for the first time, I was afraid. A DVT (Deep Vein Thrombosis) is not something to be overlooked or untreated as 1 in 10 will develop into a pulmonary embolism (PE) if ignored. Venous thromboembolism (VTE) is a disease that includes DVT and PE (both of these are forms of VTE) and is responsible for a death every 6 seconds globally. The threat of this is real, left untreated this could have been a lot worse than it currently is.

When so many medical occurrences present themselves in a short space of time, it’s easy to feel like a hypochondriac. I push through the pain and sometimes don’t say a word because I fear people with think I’m over exaggerating or attention seeking. The sad reality is that this ‘tough’ exterior was almost the reason I didn’t go to the doctor yesterday and could have ultimately been the cause of a much more serious situation. It isn’t fun to be pummelled by one health issue after the next and I’m at a point where long term decisions are in planning, where lifestyle choices and career changes are in the very near future and where my health will no longer take a back seat to career or materialism. This was my wake up call, universe I am listening.

It is my birthday month and I couldn’t have asked for a better present. The gift of realisation… so while I won’t be getting any tattoos or piercings for the next 3 months, I remain a human pincushion on loan to the NHS temporarily.

XXX
*** Sidenote***

I have officially been told to stop my HRT therapy, hello Menopause

#winning
XXX