Just when you think you’ve got this…. you don’t

I was so pumped. So ready to tackle my diseases… until my pain management appointment rolled around. Until the planning for December holidays rolled around. It all snowballed on Sunday.

I am having a mini lupus flare. I’ve tried to deny it but I can’t anymore. My knees are hurting so bad. My achilles tendons are so sore. My ankles and wrists have now joined in. I started seeing a new physio and she said just my neck would need 2 to 3 more sessions. She is really good. A sports physio. My sacroiliac joints were hurting but now my whole sacrum is hurting. I’m using two microwave wheat bags. 1 for my neck and one for my sacrum. In 30 degree heat! Here is a pic of the sacrum area because I know alot of people are confused by this.

My sacroiliac joints and my sacrum are in extreme pain.

The worst part is because both my fibromyalgia and lupus are flaring, I am constantly exhausted. Both of these conditions cause extreme exhaustion. It’s not the kind of tired where you can have a nap and be okay.

I wake up exhausted. The worst part is that I cannot sleep. So tired you just want to cry because its been two weeks and there is no reprieve. I have to take valium when the muscle spasms are this bad. No. It doesn’t make me sleep, it just makes me even more tired. I don’t even attempt to sleep because the frustration will turn into tears and anger. I am trying my best not to get into a bad head space. I’m trying to focus on happy things, like seeing an old friend from Canada, my aunt visiting from Canada and a friend’s party. I’m trying. Really hard.

Dealing with the fibromyalgia

So I am supposed to have the neck epidural every 3 months. I’m due to have one at the end of November. My appointment with the pain management clinic was supposed to be today. Yesterday I had a bit of a panic attack. Physically I cannot handle having the neck epidural at the end of this month. My body is not strong enough yet. Remember my previous posts about the procedure?

It was awful. I battled for a while after the procedure and was put on a massive dose of pain patches. The pain was beyond extreme. I was going to call them to reschedule… then the universe came through for me! I got a message saying the Professor was ill and they needed to reschedule. I was so damn happy! This gives me time to formulate what I want from my appointment and how I am going to address the neck procedure because it’s not ideal to break the cycle. I need to have this procedure every 3 months until we start seeing progress, then we can start tapering off. For now I am on a high dose of oxycodone and a crap load of other meds to try and quell the pain. I can’t even do the exercises set out in my development plan. I will update you once I have gone to the clinic.


So the lupus flare I had was like no other. To be honest it scared the shit out of me. Nine days in hospital should give you an indication of how bad it is. I normally would go in for 3 days of intensive treatment and be okay. Not this time.

I started thinking about December holidays because I was looking at flights. Suddenly panic set in. I could feel my heart beating really fast and my chest tightening. My rheumatologist was going to be away for the full month. I was going to Cape Town. I’m sorry to say but every time I sought medical help for my condition in Cape Town I was met with such terrible incompetence. I would literally have to tell them what to treat me with.

I went to the ER once and they attempted to give me prefalgan (sic), basically panado! I had to give them instructions. They gave me a serious diagnosis without doing any tests… and the damn E.R doc was singing some R. Kelly song on repeat!! That scared the daylights out of me. I was like shit I am not letting an R. Kelly fan sedate me!

My rheumatologist said to me “you know your disease. You have 5 years experience. Tell them what they need to do. I will give you a script for the E.R to administer specific meds”. There was one week where I had a bad flare and had to go to medicross everyday to get an injection. What a holiday. 🙄

I’ve decided that I need to be prepared. That will sort of help with my trepidation I think. I have an appointment with him in two weeks. I’m going to write down my concerns. He likes that I now journal. (Thank you Taz for giving me the journal!)I will get him to give me solutions for all my fears. In the meantime Irfaan has done research and found autoimmune clinics in Cape Town to also set my mind at ease.

I was in the Girl Guides (Boy Scouts for girls) for a short while. I didn’t learn much but they had a motto “Be Prepared”. That is one thing that has stuck with me. Now you understand why my luggage is always overweight! I need to be prepared you guys! So don’t judge!😂😂😂 I think that for my December holidays I am going to run a competition for the person who most accurately guesses my luggage weight! There will be prizes up for grabs! No matter where you are in the world. I will get your prize to you!

I’ve become paranoid about my flares. Is this now the progression of my flares? Have I hit the stage in my lupus where I will be having such severe flares? I’m afraid to be away from my professors and hospitals. I’m afraid of future flares being so extreme that I will be having long hospital stays.

I came out all positive. Making changes in my life. Ready to kick this diseases ass. Now I find myself paralysed with fear. The “what ifs” are playing games with my mind. Have I crossed over to my lupus really wrecking my body??? It’s no secret that I don’t think I will make it to 50. Unless of course they come up with some new life saving meds or better yet… a cure! You may think it’s pessimistic but you don’t live my reality. I have really solid reasons for believing this. Even my rheumatologist, who tries to not scare me cannot discount this. I see so many women in their 30s and 40s dying from lupus it’s damn scary. I have a cousin who died in her 20s because of lupus related complications. Yes, there are some people over 50 with lupus but not much that I have seen. You also have to take into account:

  • The age they were diagnosed
  • The type of lupus they have (some, like discoid lupus are not terminal because it doesn’t attack your organs)
  • The severity of their lupus

This is my reality. Believe me I will fight. I won’t just give in to dying. I have alot to live for. There was one girl in one of the lupus group who fought bravely and got herself to a point where she had her lupus under control. She decided to finally have a child. She got pregnant and everything was fine. She gave birth and two weeks later died from complications because of lupus. This story will forever stay with me. This beautiful young woman who fought so bravely. Finally was able to have a child and lupus snuck in like a demon and took her life and left her 2 week old baby without a mother.

I hope this helps you understand my paranoia. I can tell you many more such stories and maybe I will do a post about it for you. Lupus… the sneaky demon. It’s like don’t get to happy about being okay because BAM it can come back and be very bloody ruthless. This is what I experienced. I ignored the signs for months because I thought I had my lupus under control. Next thing you know I’m damn sick and in hospital for 9 days. It’s like you can’t even enjoy having your lupus being under control. It’s a monkey on your back that might behave but also might attack you when you least expect it.

I’m sorry for such a long post. I guess I had more to get off my chest than I thought I had. Thank you to those who support me. Again, I cannot tell you what it means to me. Thank you Natalie for being so gracious and calling me about your party. I am really touched by you saying that either way you would have two seats there for me. It means more than you know!

My blog is growing. I am in awe. I have readers from all over the world! I am so humbled by this. Thank you for taking time out to read about my life. To all my readers I appreciate you. I said I have big plans for the blog. I’ve contacted a major make up brand. I will tell you more about it as it unfolds! I’m EXCITED about this and fingers crossed something comes out of this!

I want to do great things for people. To get sponsorships from companies to achieve some of my projects. I really need to grow this blog to show this is a serious blog wanting to take lupus and fibromyalgia awareness to a whole other level! I humbly implore you to share this blog with as many people as you can!

This is a call to action. I will share the stats with you. Let’s get as many readers on here as we can! Please! This is one way YOU can help ME!

Suggestion: on the sharing bit at the bottom of the post, if you click “more” it will allow you to share on WhatsApp. Please send to as many people on your WhatsApp contact list. You have no idea how much that will help this blog. So please, I know you have asked how you can help… this is one way you can.

To those of you already sharing my blog, you have no idea how much I appreciate you. Thank you from the bottom of my heart for believing in me and helping me progress! I love you!

One Love!