You're so bright, so beautiful,
I long for you to tell me everything is alright
But the battle isn't over yet
I look at you and see a stranger
I have known you for so long
No one knows you better
But who are you now?
You rebel against the norms
Fighting, challenging them,
For what?
To be someone whose eyes I can't meet?
I try to adapt, because I so desperately want you near
The changes that have come made you so different
I know you well enough to know that I don't know you anymore.
My hand caresses your skin, so pale, so thin, so cold
I don't know this touch
Your eyes are hard and empty.
You take me on this rollercoaster ride of emotions
and I fight to hold on
You know I never liked amusement parks
Every time I look at you, I wonder if it will be my last
I want it to be the last.
I want to go back to the way we were,
The relationship we had
When you were predictable
When we had an understanding
When we took care of each other
When I wasn't afraid of you.
I want to go back to the time when I loved my body... instead of being afraid of it.
The Healthy Rants of a sometimes healthy mature University student.
Friday 30 October 2015
Wednesday 28 October 2015
Losing
Gasping for air
Unable to breath
Nowhere to turn
Spinning
Dizzy
Falling
I catch myself
I brace myself
Waves washing over me
Shaking
Shattering
Crashing
Sitting on the floor in the bathroom
Unable to move
Tears streaming down my face
Weak
Broken
Defeated
I can't find my breath
I can't live like this
I can't be like this
Unable to breath
Nowhere to turn
Spinning
Dizzy
Falling
I catch myself
I brace myself
Waves washing over me
Shaking
Shattering
Crashing
Sitting on the floor in the bathroom
Unable to move
Tears streaming down my face
Weak
Broken
Defeated
I can't find my breath
I can't live like this
I can't be like this
Thursday 15 October 2015
One step forward, two steps back... aka clusterf*ck.
I'm not dead... so there's that. Yay looking on the positive side of things.
I woke up this morning with a very important realization... (thank you dream!)
I have been screwing up my medication for the past 2 weeks.
I was supposed to go from 50, to 40 to 30... and be on 30mg/day this week, for my prednisone.
I went from 50 to 20 to 15, because the pills I somehow got into my head (I don't know HOW, I've been taking them as to "top ups" since the beginning) were 10mgs are actually 5mgs. I KNOW prednisone doesn't exist in 10s. I've told people that. I know that I have a bottle full of 5s... I used them when I was on 120mg to make up the 20, 80 and 60 to make up the difference between the 50s and it... yet somehow when I dropped below 50, my brain decided that 4 of them equalled 40 and 3 of them equalled 30.
On the plus side of things (other than not being dead, because apparently dropping off so quickly when you've been on a high dose for so long can be super dangerous), my random high blood pressure, random weird blood sugars I've been having super high morning blood sugars that just randomly started at the end of last week, and I've had days where I've gone from 6.0 to 24.3 to 4.6... my body doesn't know what it's doing. I also have been exhausted all the time, even sleeping 12 or 14hrs isn't enough, and I have been extremely forgetful... more so than normal, and to the point it was causing me concern.
My doctor who is on maternity leave right now had me come into her office shortly after I called to say "what do I do??" (I emailed my nurse when I woke up and she suggested I call the doctor's office first to see if there was a way to get ahold of her). I got blood work done as well, and I think they may have blown my vein. It really hurts still and they didn't get blood out of it.
Essentially though, I wasted the last 2 weeks, because I go back on 40mg tomorrow, and then start the tapering schedule all over again (because clearly my body is not okay with the fast taper)
I also now have to be careful of my blood pressure because it might try to regulate itself, and I'm on medication to help lower your blood pressure... so I could get lows.
Ahh.
This is such an interesting journey.
On the fun side of things, I wrote a guest blog for a local tea company that has AMAZING teas. It was really fun. I like doing tea reviews :D
I woke up this morning with a very important realization... (thank you dream!)
I have been screwing up my medication for the past 2 weeks.
I was supposed to go from 50, to 40 to 30... and be on 30mg/day this week, for my prednisone.
I went from 50 to 20 to 15, because the pills I somehow got into my head (I don't know HOW, I've been taking them as to "top ups" since the beginning) were 10mgs are actually 5mgs. I KNOW prednisone doesn't exist in 10s. I've told people that. I know that I have a bottle full of 5s... I used them when I was on 120mg to make up the 20, 80 and 60 to make up the difference between the 50s and it... yet somehow when I dropped below 50, my brain decided that 4 of them equalled 40 and 3 of them equalled 30.
On the plus side of things (other than not being dead, because apparently dropping off so quickly when you've been on a high dose for so long can be super dangerous), my random high blood pressure, random weird blood sugars I've been having super high morning blood sugars that just randomly started at the end of last week, and I've had days where I've gone from 6.0 to 24.3 to 4.6... my body doesn't know what it's doing. I also have been exhausted all the time, even sleeping 12 or 14hrs isn't enough, and I have been extremely forgetful... more so than normal, and to the point it was causing me concern.
My doctor who is on maternity leave right now had me come into her office shortly after I called to say "what do I do??" (I emailed my nurse when I woke up and she suggested I call the doctor's office first to see if there was a way to get ahold of her). I got blood work done as well, and I think they may have blown my vein. It really hurts still and they didn't get blood out of it.
Essentially though, I wasted the last 2 weeks, because I go back on 40mg tomorrow, and then start the tapering schedule all over again (because clearly my body is not okay with the fast taper)
I also now have to be careful of my blood pressure because it might try to regulate itself, and I'm on medication to help lower your blood pressure... so I could get lows.
Ahh.
This is such an interesting journey.
On the fun side of things, I wrote a guest blog for a local tea company that has AMAZING teas. It was really fun. I like doing tea reviews :D
Sunday 11 October 2015
Mini breakdowns and new perspectives
Last night I had a mini breakdown.
I thought, and verbalized (sort of), while sobbing uncontrollably, that I don't know why I was allowed to survive DRESS Syndrome, only to be given all of the issues I'm going through now and that I was so tired of dealing with it.
After a few hours of on and off crying. I went to sleep.
This morning I woke up with a new perspective, perhaps because it's Thanksgiving (well technically tomorrow is, but a lot of people celebrate today).
One thing I've struggled with is adding another year to my program. I keep telling myself I'm okay with it, I keep telling other people I am okay with it. But I wasn't. I think maybe I am now.
I recognize that I could not have completed 6 courses this semester... or maybe I could have, but not with good marks. I don't have the energy, I have too many doctor's appointments, there's too much that's still wrong.
I also realized that if I HAD gone with the 6 courses, I would not have taken Disability Studies, which I absolutely love, and I think will benefit me both personally, and academically in the future. It's giving me a lot of new perspectives on a lot of things, especially disabilities. It's kind of funny (not in a ha-ha way), I haven't even really thought about the fact I have MS in the past couple of months. Even when my hands bother me I associate it with neuralgia, not with MS (although it's the MS that causes the neuralgia).
I also get to take other cool courses, there's a Distance Ed course at Laurentian that I want to take, that I can take next semester if I want, and get credit for. There's the possibility of a Gender & Sexuality course that I really want to take being offered next year.
If I'm going to be here for another year, I want to expand my knowledge and gain more perspective... I want to build the strongest base for going into my Masters possible, but I also want to learn for me... because I don't know what the future holds, so I want to be happy right now.
It's sometimes hard to be happy, especially when it seems like everything is out to make your life difficult, when there's rocky roads all over the place... It is reinforcing the fact that I actively do things in life that make me happy. I need to not do things in life that stress me out.
I'm thankful for the mini-breakdown. I'm thankful that it didn't overwhelm me or break me completely, and I'm thankful that I've gained a new perspective, and reinforced some previous thoughts.
I thought, and verbalized (sort of), while sobbing uncontrollably, that I don't know why I was allowed to survive DRESS Syndrome, only to be given all of the issues I'm going through now and that I was so tired of dealing with it.
After a few hours of on and off crying. I went to sleep.
This morning I woke up with a new perspective, perhaps because it's Thanksgiving (well technically tomorrow is, but a lot of people celebrate today).
One thing I've struggled with is adding another year to my program. I keep telling myself I'm okay with it, I keep telling other people I am okay with it. But I wasn't. I think maybe I am now.
I recognize that I could not have completed 6 courses this semester... or maybe I could have, but not with good marks. I don't have the energy, I have too many doctor's appointments, there's too much that's still wrong.
I also realized that if I HAD gone with the 6 courses, I would not have taken Disability Studies, which I absolutely love, and I think will benefit me both personally, and academically in the future. It's giving me a lot of new perspectives on a lot of things, especially disabilities. It's kind of funny (not in a ha-ha way), I haven't even really thought about the fact I have MS in the past couple of months. Even when my hands bother me I associate it with neuralgia, not with MS (although it's the MS that causes the neuralgia).
I also get to take other cool courses, there's a Distance Ed course at Laurentian that I want to take, that I can take next semester if I want, and get credit for. There's the possibility of a Gender & Sexuality course that I really want to take being offered next year.
If I'm going to be here for another year, I want to expand my knowledge and gain more perspective... I want to build the strongest base for going into my Masters possible, but I also want to learn for me... because I don't know what the future holds, so I want to be happy right now.
It's sometimes hard to be happy, especially when it seems like everything is out to make your life difficult, when there's rocky roads all over the place... It is reinforcing the fact that I actively do things in life that make me happy. I need to not do things in life that stress me out.
I'm thankful for the mini-breakdown. I'm thankful that it didn't overwhelm me or break me completely, and I'm thankful that I've gained a new perspective, and reinforced some previous thoughts.
Saturday 10 October 2015
More side effects, more drugs
8.
8 is the number of things I have to take to counteract the side effects of the prednisone.
-NPH and Novorapid to help with the steroid induced diabetes
-Tecta to help with the heartburn because the prednisone is eating my stomach
-Fosamax to help prevent osteoporosis because prednisone hates bones
-Calcium to help prevent osteoporosis
-Vitamin D (okay I'm supposed to take this anyway, but it gets mentioned because I was told to take it) to help with the Calcium absorption.
-Hydroxyzine to help me sleep because prednisone makes that difficult (I've been able to cut back on this one as I've been tapering.)
and now ramipril.
Since I dropped to 40mg/day I've been having weird dizzy spells. I know that decreasing prednisone can cause a drop in blood pressure (I was warned if I ever am sick and can't keep it down to go to the hospital immediately and get IV because it's dangerous to stop cold turkey because it can severely drop your BP). My blood sugars were fine, so I thought, maybe since I normally have normal-low blood pressure, it dropped. I had the nurse at my school check it.
170/98. That is the OPPOSITE of low. Especially since 3 weeks ago it was 110/70 (and has consistently been around that for the past two months... I think I had a 125 over something once...)
The nurse made me go to the emergency room. I was in and out in under 4 hour which was surprising, and nice, since I did not want to go. Urine test, ECG, bloodwork. The doctor said it's common for people on prednisone to get high blood pressure, and gave me a prescription for low dose ramipril.
It's kind of funny (not in a ha-ha way) that I wonder which is worse, (other than the potential for death part of DRESS Syndrome), DRESS or prednisone side effects. Diabetes, high BP and osteoporosis are pretty severe side effects. Although elevate liver enzymes are pretty severe too, and the rash was HORRIBLE. (Now I'm itchy from prednisone giving my extremely dry skin... so apparently I'm destined to spend half a year being itchy)
In Honour of it being Thanksgiving weekend, I am going to look at what I'm thankful for
-I am thankful to be alive.
-I am thankful to have people who love and support me
-I am thankful to live in a country with access to universal health care. Where I never have to question if I can afford to seek help. I think that the 20% mortality rate for DRESS is influenced by people who live in countries without access.
-I am thankful my Ontario provincial insurance covers me while I'm in PEI
-I am thankful I am well enough to continue my post secondary education, even if it's a lower load.
-I am thankful to live somewhere where I don't have to worry about air strikes or being bombed.
-I am thankful to not currently have food insecurity.
Happy Thanksgiving to all my fellow Canadians. Enjoy the harvest.
8 is the number of things I have to take to counteract the side effects of the prednisone.
-NPH and Novorapid to help with the steroid induced diabetes
-Tecta to help with the heartburn because the prednisone is eating my stomach
-Fosamax to help prevent osteoporosis because prednisone hates bones
-Calcium to help prevent osteoporosis
-Vitamin D (okay I'm supposed to take this anyway, but it gets mentioned because I was told to take it) to help with the Calcium absorption.
-Hydroxyzine to help me sleep because prednisone makes that difficult (I've been able to cut back on this one as I've been tapering.)
and now ramipril.
Since I dropped to 40mg/day I've been having weird dizzy spells. I know that decreasing prednisone can cause a drop in blood pressure (I was warned if I ever am sick and can't keep it down to go to the hospital immediately and get IV because it's dangerous to stop cold turkey because it can severely drop your BP). My blood sugars were fine, so I thought, maybe since I normally have normal-low blood pressure, it dropped. I had the nurse at my school check it.
170/98. That is the OPPOSITE of low. Especially since 3 weeks ago it was 110/70 (and has consistently been around that for the past two months... I think I had a 125 over something once...)
The nurse made me go to the emergency room. I was in and out in under 4 hour which was surprising, and nice, since I did not want to go. Urine test, ECG, bloodwork. The doctor said it's common for people on prednisone to get high blood pressure, and gave me a prescription for low dose ramipril.
It's kind of funny (not in a ha-ha way) that I wonder which is worse, (other than the potential for death part of DRESS Syndrome), DRESS or prednisone side effects. Diabetes, high BP and osteoporosis are pretty severe side effects. Although elevate liver enzymes are pretty severe too, and the rash was HORRIBLE. (Now I'm itchy from prednisone giving my extremely dry skin... so apparently I'm destined to spend half a year being itchy)
In Honour of it being Thanksgiving weekend, I am going to look at what I'm thankful for
-I am thankful to be alive.
-I am thankful to have people who love and support me
-I am thankful to live in a country with access to universal health care. Where I never have to question if I can afford to seek help. I think that the 20% mortality rate for DRESS is influenced by people who live in countries without access.
-I am thankful my Ontario provincial insurance covers me while I'm in PEI
-I am thankful I am well enough to continue my post secondary education, even if it's a lower load.
-I am thankful to live somewhere where I don't have to worry about air strikes or being bombed.
-I am thankful to not currently have food insecurity.
Happy Thanksgiving to all my fellow Canadians. Enjoy the harvest.
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