I have been having a pain flare for 11 days now. 11 Days of excruciating pain. It literally robs you of days. Even weeks. It has literally robbed me of 11 days because I haven’t gotten nearly enough done that I wanted to during this time. My life has been on pause. Everything has to just wait. All the things I have been excited about, has to just wait. I cannot begin to explain the level of frustration and anger. For the past 11 days I haven’t been living, I’ve been existing. Like how is it even possible to be in this much pain?
I don’t know how to explain it. Perhaps the best way is to liken it to extreme toothache or a migraine.
So you have your condition. Migraine or toothache. Choose your own adventure. If you’ve ever experienced either of these pains you know you’re constantly thinking about that throbbing pain and can’t think of anything else. ( I remember my brother taking himself to E.R for toothache because obviously at night there are no dentists available, but the pain was so extreme he drove his own ass to emergency.)
We have all been there at sometime in our life. Whether physical or emotional. If you didn’t you’re damn lucky. Now, think of a time you were in pain. Think back to how you felt and what you did to try and stop the pain. Even if it was period cramps or stomach cramps.
Now think of having that pain all day. Every day. Without cease. Toothache that never stops. A migraine that never gives you time to get one breathe of air without pain. You just try and find ways to ease the pain. Desperately You go to your Specialists. They tell you to go E.R when it gets really bad because they don’t keep the necessary stuff in their rooms. They know how severe your pain is and they’re not equipped to deal with it in their consultation rooms.
You go to E.R and wait. Your frustrations build because your pain is extreme but they have to follow protocol. No matter what field you are in you know about “protocols / processes” that must be followed. Now imagine having an excruciating headache but they need to complete patient forms with you. Are you seriously asking me about my family God I hate it but I know I’m one step closer to relief.
They finally call your name and you have to lay on a bed until a doctor can see you. So you wait. Literally lay there in pain. Wanting to friggin die from the pain. Like just give me something and then we can talk??? I hate this but again it means one step closer to getting treated. This is how I talk myself through the process so I don’t lose my mind with all the having to wait.
The doctor comes and you explain everything and first and foremost they run bloods on me because I have lupus and it could be lupus or fibromyalgia related. That needs to be ruled out first. It’s been a very long time since I have been in a situation with such a bad pain flare that would just not go away. I guess my symptoms are as stubborn as I am. Luckily this was the same E.R doc that treated me when I went in last week Friday. So he knows it’s real and I’m not a junky. When I saw him I burst into tears because I didn’t have to try and convince a doctor about how bad my pain is.
I tell him “Smack me hard”. He promises he will. I wait for the meds because I know he wrote it out. Now I’ve been to E.R enough times to know they keep the vials of morphine there and don’t have to wait for the pharmacy. SO.. the nurses are chattering away. I’d expect more of a sense of urgency and not so much happy hour in the E.R section. I know he wrote out the script for them. I saw him. So I call the nurse over. Your girl does not play when it comes to this. You are not going to withold your medication one minute longer. I ask “so what has been prescribed”. He lists it and I say ” Can I have the morphine immediately please. I am in extreme pain I need sometime like right now”. It works. He goes over to the cupboard and gets the Morphine. See I told you. He then inserts the I.V line because he needs to be running another pain killer via I.V. Never was I so happy for the needle being stuck in my arm. THIS is what I had waited for all this time and paperwork for. This I.V was going to sort everything. I hoped.
They gave me morhphine and ran 3 other painkillers via I.V. It didn’t make much of a difference. The doctor and I spoke about it and decided the best next action was to get the neck epidurals done a.s.a.p because we were treating symptoms but we needed to get to the root causes. I was given a fentanyl patch again. The doctor wanted to give me another one because I was going to be travelling and he understood the pain I was in and that I might not get to see my specialists before I left.. HOWEVER, due to legislation because of drug addicts, I was not able to be treated properly! He was limited to giving me just one patch because apparently drug addicts would come in for a fix and get a few patches from one hospital and then go to the next hospital. I am so angry at this. Maybe, just maybe this time it would work though? Boy was I was wrong. The meds wore off 💣. The pain made a spectacular reappearance! The meds are back by the gobble full. I literally have a handful of meds that I shovel down my throat to try and it get from a 9 to an 8 or 7. Yep, just an 8 or 7. This counts as breakfast. My tummy is full after that. Last year I got rid of taking copious amounts of meds because I got my diseases to an okay state with the help of my specialists. I refuse to go back to a life of having to take insane amounts of meds just to function. Right now, without them, I can’t function.
No matter how hard I try I this flare will not give in. I’m stubborn so I guess I would be the one with damn stubborn on symptoms! Right now I’m stopping my mouth from a release of extreme expletives. This uninvited guest.( Don’t forget your toothpaste.) I wanted this blog to be my real life. To be authentic so people could understand what it’s really like so here goes…
It’s been 11 friggin days of excruciating pain. I can’t keep going to E.R because they will think I’m a bloody junky. My specialist are referring me to E.R because I will need the extreme stuff. I’m trying to so hard at home. Heated wheat bags, pressure point work, yoga, epsom salts soaks but this is beyond that.
The reality is that you are in extreme pain. It’s been going on for 11 days! 11! It never stops. Some days are manageable, some are hard and then I have flares that is the most painful thing. I can’t deal with it. This is just too much. Why is it not getting better? I can’t even cope anymore but guess what…? Life goes on! I’ve taken time out to deal with the pain but how much longer can I take time off of life? This is exactly why I am on disability.
So all I can do is go for the physio today and the hyperbaric chamber and flotation tomorrow therapy and hope for the best. I have to literally push through the pain to do daily tasks. Tasks you think nothing of doing is so strenuous for me. Think about it. 11 days later , you still have that toothache/migraine. It hasn’t gotten better, it has not gone away. How batshit crazy would you be round about now? Now think of having that toothache/migraine there FOREVER. Just sometimes it’s not too bad and you’ve learned to deal and fake it through that pain but other times they flare up like crazy where you are curled up in a ball, in tears, in pain. FOREVER??
That’s basically what I’m going through right now. I’m trying to push through and see if it will somehow push the pain to the background at least. Like a sad violin playing in the background but at the same time Jackie Chan literally kicking me in the back and neck and roundhousing me but still I need to get up every time, like this time, and push through this because I need to find a way to continue with life. Right now, that’s with copious amounts of medication.
We are trying to get an emergency appointment with my Rheumatologist because something has got to give. Believe it or not, one thing that it badly affects is your mind because all you can think of is the pain because it’s there, in your face, unrelenting. Like that toothache or migraine feeling where you can’t concentrate on anything else.
I keep telling myself “This too shall pass” as I say to many people but bloody hell I have to ask “WHEN?” Can a woman get a break here. What I would I give for a pain free day or even half a day right now. You have no idea. Anyone want a kidney???? So please forgive me if you see the rantings of a crazy person. That’s just me on a WHOLE LOT of medication. For now that’s the only way I can exist. I am certainly not living. I am merely existing in a medically and pain induced fog.
This is also a disclaimer! You cannot hold me to the things I say during this period!!! I am literally needing to take handfuls of medication all day long to try and at least dull the pain but this post is a testament to me pushing through the pain. This is a reminder I guess for the activism I want to do this year. I am turning my pain into my purpose!
I appreciate all of you who genuinely care and check up on me. Thank you for being there. Thank you for understanding my world and the restrictions I have without catching feelings. To my people who have zero expectations of me. Who don’t get upset if I don’t get to see them in Cape Town. Nothing is stopping you from saying “Hey, let me make it easy and come over to you. That way you don’t have to contend with another dress up and show up session because I know that is hard for and takes alot out of you” Instead of getting pissed off that I didn’t drag my sick ass to see YOU. I don’t need such negativity in my life and I’ve cut that out in my own way. You have no idea the difference you make in my life. I now have the courage to say #mefirst Thank you for being you in my life.
As usual keep sending all those prayers and positive energies. I believe they work. For those who comment on my posts, it means alot. It means you read my post and that’s an honour. To those who send me personal messages, I love you too. Some of the words you guys say to me I don’t even feel worthy of. Some people have sent me long messages and there are things in there that actually make me cry.
Will you all please help me with that? In that way I will be able to help the ladies at the government lupus clinics. Just getting them sunscreen is a literal life saver. Too much sun makes your lupus flare up. If your lupus flares up it attacks your organs and it can be fatal. So can you see how something as little as sunscreen can help these ladies? I’d love to give them little pick me up bags because I know the reality of the depression of this disease. I want to encourage these women and equip them with tools to live a better life and become Lupus Warriors too!
For those of you who do share I just wanted to share some stats with you… For the year to date we are sitting on 1656 views already and it’s only the 6th of the second month of the year! The international readers have now gone up to 31 countries! Now let me blow your mind ….. and this is all related to you in some way getting the blog around …
Never in my wildest dreams did I think it would take off like this. I am so humbled. So incredibly humbled. I am disabled but apparently I do have some abilities. I however, could not have done this without the help of all of you! Now because of this achievement I will let you in on a secret. I am currently working on a YouTube channel which I hope to launch in about a month! It won’t just be about lupus and fibromyalgia. See that Mukbang post I did? You will be seeing lots of crazy things like that. I will be do reaction videos and informative videos on how crazy the world is getting. I love it! It also works great because it won’t require any typing from me. I have to write in little sections to put out a blog. I cannot overuse my arm. So with my blog I can do it over days at my own time. It does however, limit the amount of things I want to talk about.
So a YouTube channel is the obvious choice. I will be able to speak on many topics. It will be a lighthearted, sometimes conversation starting, informative vlog. I hope you will all support me in that endeavour as well! My 15 year old brother is my biggest supporter when it comes to this. He even showed his mom a ring light and told his Mom that’s what they needed to buy me. He is on my case about it. He won’t let it go. It warms my heart so much that he is such a fan and also such a motivation for me. Shoutout to you Matt. I know you love it when I do this. Love you my brother.
THANK YOU ALL AGAIN!