I wrote a blog called My Lupus story, this is a true story of a very good friend that was originally written with mine but I felt her story needed a place of its own.
My husband used to have a friend that lived in New York, they kept in regular contact through the internet. He came online one night talking about his new girlfriend. Now he, my husband’s friend, was a complete prick, and shall only be referred to from now on as ‘The Prick’, and believe me, I’m being kind. But the pricks new girlfriend couldn’t have been more different. She was beautiful, vibrant, vivacious, funny, modest, considerate to a fault, and all with a smile that could light up the darkest of rooms. One evening The Prick told my husband about a rash she had on her face. She’d always had the rash but it seemed to become more prominent when she was hot, or worn out. As he described it my husband thought it sounded similar to my rashes. Over time he told my husband about other symptoms, ones that rang too familiar bell. So, instead of playing a game of ‘pass the question’, my husband gave him my email address to give to her. This was also useful as there were questions she wanted to ask without The Prick knowing.
The first email she sent to me was very long, but what struck me most was that it could have been written by me. There were just so many similarities, from past to present. After answering the multitude of questions, I ended my reply by telling her to go and see her doctor to get some tests done. They wanted to test her for all sorts of things, so she told them straight out, no messing around that she wanted to be tested for an auto-immune disease. I was so proud, it’s not easy to second guess your doctor, and, as a lot of auto-immune patients will know, it can be even harder to get a diagnosis, but eventually it was confirmed. She was given a diagnosis of SLE. They placed her on the meds she needed and we conversed regularly. It didn’t take long for me to realise, from our conversations, that the symptoms she was getting that had taken me years to begin to suffer with had started to affect her far quicker. Only weeks later, she had a collapsed lung, which took her a while to recover from, and left her with chest pains. They completely debilitated her to the point where she could just lay on the bed and cry. Praise be, though It was not long after that she broke up with The Prick, Call me bias, but I think it was the best decision she ever made. Mainly because he was a massive twat. She then made one of the hardest decisions any adult can make…she moved back in with her parents. Luckily for her, she got on really well with them. She was always talking about how much fun they are, how good they have always been to her, and how supportive they are. I know she was happy there.
We spoke about all sorts of things, not just health related. She told me that whenever she was ill her parents, and mother in particular, would immediately go into care mode. Once, while she was having a flare-up, she told me her mother had managed to change the sheets on her bed all while she was still asleep in them. I had images of her mother doing the old table and cups trick. Apparently she never slept naked around there again. On the health front, it wasn’t hard to see that things were getting more difficult for her. Along with the aches and pains, she started talking about how clumsy and confused she was getting. She was putting things in the wrong places, forgetting what she was doing, and having trouble concentrating. For instance putting the butter in the dishwasher.
Then one day she asked me about ankle swelling. One of the things I was told to look out for with my kidneys was swelling of the ankles. She said hers became so swollen in the evenings that she couldn’t even get her slippers on. I asked about other symptoms and she told me she had foamy pee that smelled really bad. My husband always tells me that mine smells of cheap processed chicken roll. She also mentioned seeing blood too. Obviously she went to her consultant and, after more testing, they discovered one of her kidneys had a problem. As with everything else concerning her health, things started to go downhill rapidly. After seeing a consultant, she was told she would possibly need the kidney removed. Then, she told them about her chest pains, they did a scan and realised that she had a partially collapsed artery and would have to put in a stent. She didn’t like the thought of that but when your lives at stake she would have been stupid not to listen.
Eventually she moved out of her parents and back into a house she shared with an old roommate. She liked living with her parents, but her mum’s a great cook, so on top of the steroid weight, she was also gaining real weight. My husband had always mentioned to me, that whenever I get a new symptom, or new meds, my first concern seems to be how it affects my appearance. Have I gained weight? Do I look tired? He tells me I have it wrong. So, whilst I wasn’t pleased for her that she had gained weight, I was pleased that I’m not the only person that does this.
The overriding complication for my friends health was that you can’t just take a kidney out, it’s not an easy procedure. Add to that her blood pressure was very high and it needed to be lower before they’d even consider it. But kidneys cause high blood pressure and vice verse. Then, whilst they were trying to control her blood pressure, her already bad luck turned for the worse. It was November 2012 and Hurricane Sandy hit New York. All I could do was watch the devastation on the news, while she lived it. Afterwards was the longest time we went without talking to each other, but I was relieved when she finally contacted me to let me know what had happened.
It turned out she was back living with her parents, as where she had moved into had been devastated. She’d lost a lot of things but she kept her humour, joking that “Everything was damaged, even the couch.” like couches have some special protection against hurricanes. As far as the aftermath of Sandy it was devastating, they were left without power, had no heat and worst of all she couldn’t use her nebulizer and had no meds for weeks.
Unfortunately, probably due to the circumstances, it wasn’t long before she was hospitalised, again. She had a friend that kept me updated with regular news about how she was, I remember he would constantly tell me she looked really ill, but she always had a smile on her face making sure everyone else was okay. I would also get the occasional email from her when she was able, letting me know how she was feeling, and general gossip. I tried to keep her spirits up by giving her things to think about for her next email. I don’t know how much I helped, but I hope I helped a little.
Again, the thing with Lupus is that things can spiral, and spiral they did. Alongside her kidney and lung problems, her blood pressure was out of control and she started running a fever. She was gravely ill and even though the hospital put her in isolation she developed an infection, nothing seemed to be working for her. She was getting weaker and weaker so they made the decision to put her in an induced coma.
The next day, she died, only 34 years old and the only child of two of the nicest people you could know. Her lungs failed and then followed every other organ in her body, there was nothing they could do for her. There’s no doubt in my mind that the hurricane played a large part in her death. It had only been just short of a year since she first wrote to me and she was already gone, it was devastating and all happened so quickly, it’s really very scary. Even in her grief her mum took the time, as hard as she found it, to explain what had happened. I wrote back to her the same day through my tears, I had not been that heartbroken ever. Even within their grief they had saved an empty chair for me at the funeral out of love and respect of their daughter. That’s how nice they are and I’m privileged to still be in touch with them regularly today. I hope the Information is correct as I was only getting e-mails from a third-party.
The hardest part for me was making and losing a very good friend because of Lupus. It was the disease that took her away, but at the same time, the same disease brought us together as friends. That is little consolation, but I still consider myself lucky to have known her. For my husband, the hardest part is seeing how her symptoms matched mine, and then overtook. But, he says, it seems that now my symptoms are catching up with hers and it scares him.
I wrote this blog post, not only because I miss my friend with all of my heart, but it shows how sporadic and out of control this disease is. The symptoms can vary so much and the response so varied it’s unbelievable. I kept all of our email correspondence, put them in order and loaded it onto my E-reader; it’s a very bitter-sweet book to read.
She was so special, unique, funny, ditsy the list could go on for so long that this one piece could never fully do her justice, but I wanted to try.
Thanks for reading.