I Come With a Disclaimer – Lupus Diaries

The title of this article is courtesy of friend who called after a long while and managed to bring me more than a week’s share of laughter, and along the way managed to get me to talk about my symptoms without feeling ashamed of them.

My toenails have been falling off. I’m going through Lupus chemotherapy so this is expected. No, it is not! I expected hair falling off, I expected fingernails getting darker. What I did not expect is my toenail just freaking falling off! 

My friend, who is something of a geeky nerd asked, ‘So how in the world do you explain this during sex?’

I’m not sure which is funnier, the unlikeliness of that scenario seeing uhm well, the blossoming cactus is growing in the desert, or that the issue of toenails would actually come up during intimacy. Unless, of course,  a foot fetish was involved.

In all seriousness, though, I expect that I will always have to explain one thing or the other related to the fact that I have Lupus – 4 other autoimmune disorders.

There’s no way my friend was going to let this go without pulling out the pun: ‘I come with a disclaimer.’

It is such a reality for many people living with autoimmune disorders. Chronic illness will often test your relationships – romantic, marriage, parent-child, work relationships, friendships. Which is why for the last few weeks we prepared to have the @SheBlossoms Twitter #AskAboutLupus chat topic titled Chronic Illness & Its Impact On Relationships.

#AskAboutLupus


What did the chat reveal?

You have to decide how much you will reveal to people you interact with, to people who you are subordinate to, to people you are intimate with, to people whose lives, finances and so on are impacted by your well-being.

There are emotional and ethical implications as well. Many people people living autoimmune disease often have to face mental health issues which can impact their partners – romantic or business. 

Certain chronic conditions can be passed on hereditarily. A person must decide if they will procreate or not. This can be a difficult decision if your partner wants children and you have made the decision not to have children.

In societies where extended family have a strong influence on a couple’s choices, family interference can cause strain if a person’s chronic illness means lower income, no children, etc etc.

My personal challenge has been feeling guilty for not being able to do ‘enough’. 

I am not quite sure what enough is. I keep feeling that I need to do more. For She Blossoms the little Organisation that just now bloomed. To do more chores in the house. To do more to earn more income to support myself and not have to ask for help. To do more. It’s quite possible that if I don’t watch myself, I’d run myself into the ground. Literally.

A few days ago, a friend of mine said something that hurt me deeply, but it made me reexamine myself. At a time when I was incredibly ill, barely able to hold my own, she had expected me to do something for her and felt that I had failed her. In truth, I had no idea what she needed for me, and even if I’d known, I probably wouldn’t have been able to do much to help her. But that’s far from the point.

The point is, I barely understand the chronic disorders I live with. I learn a new thing about Lupus every day. It is more than unfair of me to expect my friends to understand exactly how Lupus or any of the other autoimmune disorders I live with affects me. I can try to explain some things, and hope that they care enough to do some research, but that’s about all of it.

I’m ever more committed to spreading awareness about Lupus. Which is why for the past 7 week I’ve been hosting the #AskaboutLupus Chat on Twitter under the handle @Sheblossoms. In a few weeks, the chat will be handed over to the Twitter handle @AskaboutLupusKe

In the meantime, I am occupied with trying to complete my treatment so I can hopefully go into Lupus remission. I am currently undergoing Lupus chemotherapy as well taking medication to manage Sjorgrens, scleroderma, Raynauds Syndrome and Fibromyalgia.

Unfortunately, because I had to resume the use of immunosuppressants, I am once again suffering from Cushing’s syndrome and Left Ventricular valve dysfunction (cardiac). It will always be an issue I suppose because I am very prone to both syndromes. So once again I’m fighting to keep the cushingoid weigh off which isn’t easy when I’m dealing with chemo. Interestingly, the particular chemo I’m going through doesn’t usually cause weight loss. It cause hypoglycemia, and slows the metabolism. 

That’s that about my treatment. Here’s a little about my fundraiser.

The online fundraiser for my medical bills is still on, and at 24% of the goal. You can add to it via MPesa Paybill 891300 Account JMARURU. If you are abroad or for whatever reason wish to pay via Simbapay or Paypal, you can do so on the page here. Any amount of donation will be so very much appreciated.

A few weeks ago, I was so humbled and pleased to accept with gratitude, Peter Elungat’s donation of his beautiful painting called The Untold Story.

The Untold Story

The Untold Story


Last week, in answer to Peter Elungat’s call out to fellow artists to donate to my medical fundraiser, Ndeithi Kariuki donated his beautiful artwork titled Jazz 3.

Jazz 3

Jazz 3

 

To purchase either painting you can contact Elizabeth Maruru on 0722580936 or email julietmaruru@gmail.com.

After consultations, my family has decided that 10% of the proceeds from the sale of both paintings in addition to any funds remaining after my medical care will go towards Lupus Awareness & Patient Advocacy under She Blossoms.

We will of course wait to see how things turn out, but I am looking forward to fighting this cruel disease within my body, and as a lupus awareness advocate.

Love & Light to y’all!

Advertisements

2 thoughts on “I Come With a Disclaimer – Lupus Diaries

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s