Life Update - PsA update and some whingeing.
Hey guys.
Todays post is going to be a bit less cheerful, because to be honest, I'm just not feeling it.
I've been asked alot lately if I have PsA. The simple answer is yes.
I've said many times that for me, my skin is a back seat issue, which I know is the case for many of us. My joints are my top concern, and the cause of most of my pain.
Before I started Humira, I was diagnosed with PsA - I was about 19 at official diagnosis, but had the symptoms from about 15/16. It started in my lower back and particularly in my Sacroiliac joint. I tried massage, and physio, I was given a support belt, and told to wear it as often as possible. It was one that was designed to pull my pelvis back in, as the joints were being pushed apart. Then my hip joints started to go. I was regularly only able to walk with crutches, after a while I was told that I had recurring bursitis, and best course of action was to do cortisone shots into the joints as needed.
Centerlink sent me for a JCA (Job Capasity assesment) who deemed me capable of working (which I wanted anyway - just in the right role) who took me to do a cold canvassing resume drop. I got a job that day. As a waitress. They okay'ed it. They were useless.
I was working full time hours on my feet, and was lucky to have a great boss who saw the hard work I did despite my health, and pushed me to work from the top and delegate what I could. He knew things were pretty bad if I called in sick which was rare, and it was usually either from, or on my way to the hospital for my shots. They got so frequent, the only doc that could give them gave me her direct number, told me to call her when I was on my way, then she would come and pluck me from emergency, find a bed, jab me, and then send me off again, to save me waiting around. I'd be back at work the next shift.
One night, after Jason played a game of basketball, I stood up after the game and stretched. I bent to one side, and semi-dislocated my hip, before swinging the other way, and popping it back in again. I was only 18. Just what every 18 year old wants.
After I began Humira, All my pain was gone within 24 hours! It was always in the back of my mind that things could still be getting worse, but I had no idea, and none of my doctors told me what to expect from it, how it would help me long term, just that it would help.
It was only while trying for our little one, that we saw it was still there, and the time was ticking away until the pain came back full force. While I was off it, I was having some trouble with my jaw, I put it down to wisdom teeth issues, I went back to Humira, the pain went away, I didn't think much of it, because the pain was gone.
Before starting Taltz, I had around a 9 month gap with no treatment. I chose to go that way because I had noticed that my PsA had spread considerably. I was concerned that the Humira wasn't so much helping, but hiding the worsening of my joints. This became more concerning when, after being off a short while, I discovered I had a great deal of issues with my teeth, that I was un-aware of until it was too late. Removals, Root-Canals and now surgery are required to attempt to fix these problems. I've had dental problems my entire life, in part my own stupid fault, and in part due to the meds I've been on over the years. They were so bad toward the end of my pregnancy, I was taking pain relief for them during labor, because they hurt worse than birthing a human.
My wrists have played up alot after my son was born, and the doc's thought it was Carpel Tunnel. Nope, after nerve conduction testing, its just Arthritis. My right shoulder is severely affected, and my left is going from having to pick up the slack from my right.
My wisdom teeth issue? I finally accepted that it was arthritis after I could no longer eat solid food for months because of the pain, inability to put bite pressure on anything more solid than custard and feeling of bones grinding - Turns out that my jaw was actually dislocating and I've knackered the cartilage in my jaw joints. That's also surgery. Helped me lose the stubborn baby weight though, so, small wins.. :p
I went to my GP because I was so exhausted, I couldn't stay awake for more than 2-3 hours at a time, was like a walking zombie when I was "awake", I was getting frequent headaches, plus the pain and discomfort of my skin and joints in full swing, and being starving all the time thanks to my jaw. He told me to go back on Humira and wait until I could get into the Rheum.
I was worried that once the pain was under control again, the rheum wouldn't take me seriously, but the pain got so bad, I had to make the call. So I did, and then I was told they would no longer approve me for Humira. Along came Taltz.
My hips had started to go again, Taltz has calmed that back into submission, but everything else still hurts, so I don't really understand why my hips are fine. I mean, everything else hurts less, definitely, but it still hurts.
The upside is because everything is still a bit sore, I'll be able to accurately describe what and where hurts. I'm rallying for a full body scan, so I can have some kind of baseline to measure from. Its probably the best i'll be from here on out. I got my letter to say my appt is in about 10 days, so, great timing.
Since starting Taltz, My tiredness has only gotten worse, as have my headaches. After my loading dose, I had a headache for all but 2 days out of two weeks, some days were migraines. Much the same from the second dose. I don't remember alot of it, so I am glad I blogged throughout, because I was so tired I feel like I'm foggy on what was real and what was a dream.
I've also suddenly become really oily - I've broken out in pimples on my face, neck, chest and upper back - the first places to clear. My hair has gone from being able to go a week between washes to lucky if I can make it to every second day.. So looks like fun colours are off the books for a while.
I'm feeling a bit defeated. I feel as though I should be happy because I am better than I was. My skin has cleared up a ton, but at the same time, my skin was not a huge concern for me. My joints still ache, and i'm so exhausted that I feel like I still cant do anything only now its because I don't have the energy.
Today is a day where I feel like I need support. People to lean on that understand, and that's you guys. I don't really have a support system other than Jason, and right now, he needs a break from being my strength, because I have exhausted him too. I know I'll be fine, I always bounce back, but tonight, I'm wallowing in my self pity and going to craft something and turn off my mind for a while.
Fingers crossed for painless restful sleep for all my readers tonight. Thank you for reading.
Millz
xx
Todays post is going to be a bit less cheerful, because to be honest, I'm just not feeling it.
I've been asked alot lately if I have PsA. The simple answer is yes.
I've said many times that for me, my skin is a back seat issue, which I know is the case for many of us. My joints are my top concern, and the cause of most of my pain.
Before I started Humira, I was diagnosed with PsA - I was about 19 at official diagnosis, but had the symptoms from about 15/16. It started in my lower back and particularly in my Sacroiliac joint. I tried massage, and physio, I was given a support belt, and told to wear it as often as possible. It was one that was designed to pull my pelvis back in, as the joints were being pushed apart. Then my hip joints started to go. I was regularly only able to walk with crutches, after a while I was told that I had recurring bursitis, and best course of action was to do cortisone shots into the joints as needed.
Centerlink sent me for a JCA (Job Capasity assesment) who deemed me capable of working (which I wanted anyway - just in the right role) who took me to do a cold canvassing resume drop. I got a job that day. As a waitress. They okay'ed it. They were useless.
I was working full time hours on my feet, and was lucky to have a great boss who saw the hard work I did despite my health, and pushed me to work from the top and delegate what I could. He knew things were pretty bad if I called in sick which was rare, and it was usually either from, or on my way to the hospital for my shots. They got so frequent, the only doc that could give them gave me her direct number, told me to call her when I was on my way, then she would come and pluck me from emergency, find a bed, jab me, and then send me off again, to save me waiting around. I'd be back at work the next shift.
One night, after Jason played a game of basketball, I stood up after the game and stretched. I bent to one side, and semi-dislocated my hip, before swinging the other way, and popping it back in again. I was only 18. Just what every 18 year old wants.
After I began Humira, All my pain was gone within 24 hours! It was always in the back of my mind that things could still be getting worse, but I had no idea, and none of my doctors told me what to expect from it, how it would help me long term, just that it would help.
It was only while trying for our little one, that we saw it was still there, and the time was ticking away until the pain came back full force. While I was off it, I was having some trouble with my jaw, I put it down to wisdom teeth issues, I went back to Humira, the pain went away, I didn't think much of it, because the pain was gone.
Before starting Taltz, I had around a 9 month gap with no treatment. I chose to go that way because I had noticed that my PsA had spread considerably. I was concerned that the Humira wasn't so much helping, but hiding the worsening of my joints. This became more concerning when, after being off a short while, I discovered I had a great deal of issues with my teeth, that I was un-aware of until it was too late. Removals, Root-Canals and now surgery are required to attempt to fix these problems. I've had dental problems my entire life, in part my own stupid fault, and in part due to the meds I've been on over the years. They were so bad toward the end of my pregnancy, I was taking pain relief for them during labor, because they hurt worse than birthing a human.
My wrists have played up alot after my son was born, and the doc's thought it was Carpel Tunnel. Nope, after nerve conduction testing, its just Arthritis. My right shoulder is severely affected, and my left is going from having to pick up the slack from my right.
My wisdom teeth issue? I finally accepted that it was arthritis after I could no longer eat solid food for months because of the pain, inability to put bite pressure on anything more solid than custard and feeling of bones grinding - Turns out that my jaw was actually dislocating and I've knackered the cartilage in my jaw joints. That's also surgery. Helped me lose the stubborn baby weight though, so, small wins.. :p
I went to my GP because I was so exhausted, I couldn't stay awake for more than 2-3 hours at a time, was like a walking zombie when I was "awake", I was getting frequent headaches, plus the pain and discomfort of my skin and joints in full swing, and being starving all the time thanks to my jaw. He told me to go back on Humira and wait until I could get into the Rheum.
I was worried that once the pain was under control again, the rheum wouldn't take me seriously, but the pain got so bad, I had to make the call. So I did, and then I was told they would no longer approve me for Humira. Along came Taltz.
My hips had started to go again, Taltz has calmed that back into submission, but everything else still hurts, so I don't really understand why my hips are fine. I mean, everything else hurts less, definitely, but it still hurts.
The upside is because everything is still a bit sore, I'll be able to accurately describe what and where hurts. I'm rallying for a full body scan, so I can have some kind of baseline to measure from. Its probably the best i'll be from here on out. I got my letter to say my appt is in about 10 days, so, great timing.
Since starting Taltz, My tiredness has only gotten worse, as have my headaches. After my loading dose, I had a headache for all but 2 days out of two weeks, some days were migraines. Much the same from the second dose. I don't remember alot of it, so I am glad I blogged throughout, because I was so tired I feel like I'm foggy on what was real and what was a dream.
I've also suddenly become really oily - I've broken out in pimples on my face, neck, chest and upper back - the first places to clear. My hair has gone from being able to go a week between washes to lucky if I can make it to every second day.. So looks like fun colours are off the books for a while.
I'm feeling a bit defeated. I feel as though I should be happy because I am better than I was. My skin has cleared up a ton, but at the same time, my skin was not a huge concern for me. My joints still ache, and i'm so exhausted that I feel like I still cant do anything only now its because I don't have the energy.
Today is a day where I feel like I need support. People to lean on that understand, and that's you guys. I don't really have a support system other than Jason, and right now, he needs a break from being my strength, because I have exhausted him too. I know I'll be fine, I always bounce back, but tonight, I'm wallowing in my self pity and going to craft something and turn off my mind for a while.
Fingers crossed for painless restful sleep for all my readers tonight. Thank you for reading.
Millz
xx
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