So the holidays are over and everyone is going back to school and work. I am going back to let’s fix Tracey. It literally is a full time job. I started the new year with a Lupus flare. In my previous post I said that I pitched up like a vagrant in a gown to New Year’s Eve celebrations. Normal Tracey would have dressed up, had make up and hair done an showed up with a smile. I just physically couldn’t. My fatigue was just getting worse to the point that it became debilitating and my lupus flare was out of control. I was in “vegetate” mode because that is all my body could muster.
Being that New Year’s Eve was with family, I thought screw it. They would understand my vagrant, bohemian, Lupus Chic. In general no one but my hubs gets to see this but I couldn’t hide it and I chose to not hide it. Why live a lie? Perhaps people seeing me like that made it hit home what a lupus flare actually looked like because it’s normally an invisible disease. Not so much as when you’re throes of a flare. I don’t even allow anyone to visit me in hospital! Being more vulnerable is something I need to work on. It’s so hard because I have serious issues around being seen as a victim. The flipside is that if I go see my specialists, my pain doesn’t seem that bad because I’m smiling and trying to look like I’ve got it together… but then I tell the specialist I’m in serious pain. Umm that does not compute… I’ve had more than one medical practioner who told me, how are you even smiling? You must be in excrutiating pain? Especially my physiotherapists. I’ve had one tell me that they’ve had rugby players with similar back problems who have literally cried and her I am smiling. Smiling like the weirdo I am. I need to do some reflection on this.
I was bad and skipped my neck epidural that was due in the beginning of December. Based on how I reacted the first time, I didn’t want to take the chance of being in severe pain during the holidays. Plus I was going to be out of town on holiday for about 3 weeks. I’ve had too many bad experiences with healthcare in Cape Town. So my rheumatologist has said to me “You know your disease. You know what works.” So when I have problems now I go to a GP and TELL them what to prescribe. So this new, unpredictable, neck epidural pain thing is just too much. Me take a chance? Hell no!
So now it’s time to go back to the pain management clinic and get the year started. Hello procedures. I am supposed to have the neck epidural every three months until it gives me enough relief to the point where we can taper off to every 6 months or so. The second part that needs to be dealt with is my SI joint. We were going to do a rhizotomy where they kill the nerves. I’m so frustrated with it I actually asked if they could fuse the joints. The pain is horrific and when it flares I’m always massaging that area. No doubt that when I do it in public (I have no shame when it comes to my pain) it looks like I’m rubbing my butt. My rheumatologist has some concerns about this because of my osteoarthritis. Bone breaking off and some other weird stuff. He has asked that we do a lower back epidural first.
I’ve had this before. Remember I was diagnosed with osteoarthritis 13 years ago and underwent alot of treatments. I had the epidural twice on my lower back for back and SI joint pain. It absolutely worked for a good 18 months or so. The procedure was awful though. I’ve heard other people’s stories and for some reason theirs was different. Mine was pure torture. I had to lay flat for 14 hours so that the spinal fluid didn’t “leak” because that would cause side effects like an extreme headache. So there I was having to lay still for 14 hours and I was numb from the chest down.
I will tell you this… I kept my urge to urinate at bay for 14 hours because I refused to use a bedpan! Now that’s some superhero powers right there! At least I could use my arms. At this time a neurologist came to see me. This was when I was first diagnosed with fibromyalgia (Didn’t want to accept it). Thank God he sedated me so heavily I slept for the 14 hours. He gave me meds to start treating the fibromyalgia and I had such a bad reaction! I stopped immediately! 13 years ago there wasn’t as much info about fibromyalgia and I resisted this diagnosis. You can find a lengthier description of my opinion at that time in one of my previous blogs.
When I had a mini stroke like event 2 years ago it left me with extreme pain in my left temple. It was debilitating and would not go away. Finally the neurologist I was seeing put me on anti-epileptics. At the beginning of the year I was on a high dose which we eventually tapered off to a smaller dose. For some strange reason this pain reared its ugly head in December, leaving me perplexed. So I upped the dose. Double like I had done at the beginning of last year.
This didn’t seem to help. I had kicked that neurologist off my team because he was over medicating me and some other issues (I have a blog coming up about the importance of a good medical team for chronic illnesses). I now need to see a new neurologist which I know is going to mean more poking and prodding. I once had a 45 minute MRI. I actually fell asleep through all the knocking and stuff because I’m so used to MRI’s. I know for sure we are going to play around with cocktails of meds again. I’m going to literally be starting from scratch with a new neurologist. Ugh.
I have had my first physio session last week. This week I see my rheumatologist. Emergency appointment they squeezed me in for. They know I will never call up for one if it wasn’t necessary. Hubby did suggest going via E.R so I could see the rheumatologist and get treated quicker. I balked at the idea. That would mean my first E.R visit already and being booked into hospital for treatment already… all in the first month of the year. No thanks. I do not want to start the year off this way. So I I’m sticking to seeing him tomorrow. It’s been tough hanging in there but I know tomorrow I will get help.
Here we go again… I need to touch base with all my specialists and medical team. Rheumatologist, nephrologist,(kidney specialist) psychiatrist, psychologist and a new neurologist. So every week it’s probably going to be a different specialist or new treatment and review and perhaps change in meds. I need to set up time with the pain management clinic but really… I already feel drained just thinking about the procedures. Oh God let’s not forget the money. The pain management Professor operates on a cash only basis so even for the in hospital procedures you have to pay cash!! The neck epidural was 6k cash after paying her 5k cash two weeks earlier for a consultation and steroid injections. I always say it’s too expensive to keep me alive!
The medical aid was kind enough (They benefit from it as well) to offer me the benefit of going onto a 12 week programme for my neck and spine at a spine clinic. So that will be happening soon. Not sure of all the details but I know things like biokinetics are involved. Dreading any exercise type things they want me to do. I always have the go to though… ” My rheumatologist says I’m only allowed to walk and swim in a heated pool”. It’s like a letter from your parents getting you out of P.E class! I will absolutely be blogging about this. Let’s see if its successful and if it is something I would recommend to others. Funny that, the medical aid must have seen all the neck, spine related claims and went whoa! She needs an intervention! You are all going to have to keep me going at the programme and not allow me to give up! You can be my accountability coaches!!
They are going to need a base line for the start of the year so I know I’m going to have to have full blood work done. Bloody hell. They have a hard time getting blood from me. Filling 6 vials is pure torture. Not sure why but this started last year. It trickles. Takes forever to fill.
Typing this post just gave me a very hard reality smack. I knew all these things had to happen but I hadn’t given it much thought while I was on vacation. Yes I felt sick. I was terribly fatigued and the lupus flare showed no signs of letting up. In fact it just got worse. Still I tried to carry on as per normal until I just couldn’t anymore. I am still dealing with feelings of guilt and frustration around the vacation. Not getting to do so much of what I wanted to do. To be more present and revel in all the festivities with my family.
One night I had invited everyone over to my Dad’s house for a get together. I find it easier to have get togethers rather than trying to visit everyone individually when I’m home in Cape Town. Well they came over and I? I slept. I slept throughout the gathering. I so much wanted to be part of everyone laughing and joking. They are such a riot. Love them madly but I just could not get up. I’m particularly dissapointed about that.
Oh Lord. What fresh hell awaits me. I’ve kind of taught myself some techniques to deal with the copious steroid injections and blood being drawn. Im damn scared of the epidurals. Especially my neck. The last time the pain was absolutely excruciating and if you read the post you’ll remember that I ended up in E.R the next day. It took them 5 hours to stabilise me and they had to give me a fentanyl patch. (Check out the story in the archives for more details around this). I didn’t even know we had Fentanyl in South Africa! I’ve only ever heard stories about the addiction crisis in the U.S
Honestly, I’m not physically or mentally prepared for this fight. I had a vacation where yes, it debilitated me at times and my fatigue was bad. Maybe because I’ve had this flare for so long and it’s getting worse and it’s making me think that bloody hell I can’t do all of this again. I’m hoping that once the flare is under control and I have my strength back I will be able to kick into warrior mode.
For now this Lupus warrior is tired. Certainly not up for any fights. I’m back to reality now where I cannot deny the symptoms. I feel sick. I feel tired. I have gone to ground. Just trying to get through the day. Blogging helps keep my mind off things and shift my focus. This is why you’re seeing more posts from me. Then there are times where I can’t bring myself to blog. Other than that all I can do is sleep as much as possible until I see my rheumatologist tomorrow.
I will do an update post after seeing my rheumatologist. Let’s hope and pray that this does not require IV treatment in hospital. I really don’t want to start my year off like this. I mean really. That’s some ridiculous crap on a whole other level. My rheumatologist is cautious though. He doesn’t want to put me in hospital unnecessarily because of super bugs. With me having a suppressed immune system I can go in for treatment, pick up a super bug and spend months in hospital or worse, I could die because my immune system isn’t able to fight back.
So let’s see what happens tomorrow. Please send positive vibes, prayers or whatever your thing is. I need it all! I need to feel better! I’ve been feeling so sick for so long that I am completely run down.
So all the anxiety and resistance has kicked in. Vacay is over. I now need to refocus and start working on my health. Im going to back to my full time job, keeping Tracey healthy. The daily battle. I’m dreading it.
But then… I saw something today that just really lifted my spirit. I want to say thank you to my supporters, to people who take the time to read this blog. A massive, special thank you to those of you who believe in me enough to share my blog. My blog has become my platform. There are lots of things coming this year and I can’t wait to share it with you. Soon! So thank you to all of you or I wouldn’t have gotten this …. I am so humbled by this. I really am. I’m also really excited because these stats equate to Lupus Awareness for me! Exactly what I’m trying to do! So please share if you think some post might resonate with someone. Even if it’s not lupus. Some posts are for people who are chronically ill. Again, I thank you!
ONE LOVE ✌