Lupus 101: Guest Post

Lupus 101
I’m so privileged to be able to write this for Counting My Spoons, finally I can feel happy about spreading awareness, or at least my journey with it. I’m Cass a fellow blogger and writer who lives with multiple beasts at my side; the biggest is the wolf or SLE (Systemic Lupus Erythmatosus). I am going to give you a brief lupus 101 in my own kind of way…..which I hope will be as positive as it is educational…..well that’s the hope anyway.

What is SLE?
SLE, and in fact any form of Lupus, is an auto immune disease that affects our connective tissues – how I hate medical phrasing – basically it affects ANY tissue within our bodies including organs and skin. So, my immune system has decided that instead of attacking any foreign enemies it would prefer to attack me. For me, the SLE involvement is predominantly within my skin and central nervous system – brain and nerves; however, Lupus can attack kidneys, liver, heart and lungs, which is why it can quickly turn serious. Imagine your immune system as bees in a honey pot; you have the workers, the thinkers, and the queens in charge. This is how our immune systems work and mine has cut out passing down the correct information to the worker bees meaning that they just head off blind to attack anything they come into contact with.

One thing I really want to make a clear is that Lupus is generally not life threatening and a diagnosis of lupus does not mean death will be the outcome. Actually, in my case, diagnosis lead to change for the better in my life. Lupus can be dangerous but the medicines you receive stop it from becoming anything more than a bully helping you to realize that it needs to be better researched and understood.

There are three main forms of Lupus. SLE (the type I have) attacks anything and everything inside our bodies, Discoid Lupus is a skin only form of the disease, and Lupus Nephritis attacks the kidneys predominantly. Lupus is often known as the great imitator as it mimics many other diseases including Rheumatoid Arthritis, making diagnosis tough, and on average in the UK it can take 7 years to be diagnosed. I am on a mission now to change this. The facts are that if it hadn’t taken 10 years to diagnose me correctly I wouldn’t have to take some of the medications I now do.

What are the symptoms of Lupus?
Oh! here is the fun bit! The main symptoms, as I can’t name them all here are there are so many, are swelling of the joints, malar rashes (butterfly type rashes on face and chest), fatigue, brain fog…oh so many funny stories to tell with that one, UV sensitivity, muscle pain/weakness, and fever. Now these are just the basics; there are many more, such as sticky blood and chest pain….but these are person specific. Like many chronic illnesses, Lupus can lay dormant at times and flare up at other times. So I can feel well enough to get out and about one day, but the next I can be flat-out in bed unable to move. My triggers are stress and infection/viruses but many are severely affected by sunlight, I can even get a flare up from a simple routine change…..not easy when I’m in my early 30’s and life changes so fast! During these times all my symptoms become dominant and the wolf decides to attack full force.
My symptoms tend to focus on joint pain, constant nerve inflammation, and fatigue; however, Lupus tends to bring friends to the party such as Fibromyalgia and CFS, so telling my symptoms apart can be difficult. As with any chronic illness, symptoms are person specific and my experiences could be completely different to yours. This can be lonely, but I think it just shows the need for more awareness and research so we can receive tailored treatments.

How is Lupus treated?
Treatment for Lupus can be gruelling or it can be very minimal, depending on how sick you are. I am currently receiving chemotherapy for my Lupus but when I was first diagnosed I was treated with steroids and pain killers. The reality is that treatment is through medical intervention, but there are also lifestyle changes you can make that help. For example, in addition to taking morphine for pain management –a nasty little drug–, I take action to help with pain management through hot baths and adding certain foods to my diet.

The general medications given to help Lupus warriors are:
• Anti Inflammatory medications
• Codeine-based medications for arthritis
• Anti-malarial drugs for immune suppression
• Chemotherapy for immune suppression
• Anti-rejection drugs for immune suppression
• Steroids for inflammation

These sound nasty I know, but actually once you find the right combination you will see a difference and, like I said, holistic options are an integral part of helping myself, especially so when taking very strong medications.

What is it like to live with Lupus?
For me it has been my life for so long that I no longer remember a time without it. My life is one that is full of life, considering I feel so exhausted every day. Yes, I have had to change; I used to be a swimmer, I used to be a gym bunny, I used to go out in the evenings and so on…but now I have found other things that I can do and love. I knit, which I have only recently taken back up. I love music and surround myself with it and I still manage to get out into the fresh air and go for walks. When I was diagnosed I realized I would have to change, but I have found the changes to be far more positive to my overall outlook on life, making me stronger and even happier.

If you are newly diagnosed don’t rush through everything. Take each day as it comes. Talk about it openly; my partner is great for letting me get all the pain out through words. Most importantly don’t isolate yourself! You can still live a life that you make your own…..it just may be a different painting than you thought it would be!