(this post should be three. but I am too tired to edit. so here it all is. A rough draft of 3 posts. pretend you are an English teacher and have to correct it. )
Prednisone Forecast First:
1. Forgot Email Password- Can't recall what it is to save my life. I feel for those with Alzheimer's because the frustration of having pred brain flip numbers or cause mild dyslexia is awful.
(as I have gone back to read some of my posts, I have seen where my brain has 'flipped' a word I KNEW how to spell. Or the slow action of pulling off the shift key when making an uppercase letter. The SECOND letter is also uppercase. Things like this is what plagues me on prednisone. I could spell check it or fix it but it helps me to see where I am at during my time on prednisone, etc.
2. Forgot Where I put Email Password (a feeling akin to misplacing your keys...) Anotheprednisone side effect; scatter brained and all over the board: ADD/ADHD
3. Wake up in middle of night- no matter what.
Usually the screaming foot fasciitis, nausea, or the Crohns in my esophagus is the uncomfortable culprit, with Prednisone and its side effects as a close side kick! (i.e. head ache, sore throat, sinus problems, eye pressure, so on and so forth.)
Last night. Or was it morning? ---
Mom, enters my bedroom at 5 -ish and finds me on my dishevled bed blogging, simultaneously wrapping a gift with butcher paper that I decorated in the night using Sharpies, and there is yarn mixed into all of this. I am atop my peach polyester bed spread.... Crazy how one day you have a normal quilt/blanket and the next thing you know you are sporting a polyester one likely seen in a Great, great Aunt's bedroom. Anwyay, back to mom coming down to Santa's big helper's room....
"What ya doin?" she asked leaning into the doorframe in her jammies.
"I am UP. buh~"
I moaned, tossed the rather cute wrapped gift, if I say so myself, onto the floor; laid back on my pillows and asked her:
"What you doing?"
Mom: "I'm up." I nodded.
Totally understand insomnia or med induced early morning waking.
Or early morning waking to race to the bathroom. (can anyone say "Prednisone just masks flares?"
Or just getting up early. Unless you need to get up early and stay up- then you can't get up. Or fall asleep a few minutes before the alarm and feel the weight of the world for awhile..
Did I mention on the blog that I found a Birch Tree Branch twig for my annual Christmas twig? - oh, wait, I had a branch once,
(aww... here is the original twig...)
that eventually I threw out after it dwindled in my room for a few months, which hardly makes it annual. hmm. Might have to make it tradition if health allows or prednisone propels!
*Another side note: As I brought some "larger" twigs, okay, so they are more like branches, inside the house in order to decorate downstairs for the holidays,
Padre gave me a questioning look and asked:
"Where are you taking those?" & "I don't think you'll be able to get those downstairs..." he was almost right.
- Getting them onto the landing and then down the stairs was pretty hard. It'll be cute once I get some twinkly lights on them! Okay, back to the post's original thoughts!
I wish I could say the title of this post had something to do with me being unstoppable at something or what I was doing qualified as work and sent regular checks to me due to the ferocity at which I can do a few things. Like with yarn. And I got paid millions of dollars to do just what I do as a stay-at-home, prefessional patient, prednisone taking pioneer of meds for the world....
Something about bringing home a paycheck makes ya feel good. I watch J. do just that- work and collect money for that work and it makes me jealous. There is no better feeling than rolling up your sleeves, setting your pace at something, and then reaping the rewards.
First off the top is Tithe- then savings. And then saving up for something special. Waiting and working so that you can walk into that store and buy that pair of roller skates. Which I wore minus a helmet or pillow to protect my poor backbone. As a kid, the Percival's driveway seemed so steep! But their concrete pad for the trailer was super smooth and my gummy wheeled skates rolled over the crack so seemlessly!
Let's get back to the yarn! Because, after being striped of my former title of being 'able' to do "hard work", things like yarn are one of my few options. Along with writing in my journal, letter writing, and eventually bringing you, Reader, into the loop.
However, even using yarn is a treacherous thing and causing some bruising. Repetitive work happens to also crunch weak veins. ???? Like writing or typing. Massively annoying. My P.T. once told me to
"Stop doing whatever it is that is causing your veins to bust."
Well, when he put it that way it meant that I had to stop myself from doing laundry, running errands, and walking/lifting/ doing physical therapy. Why? I was riddled with broken, what he called, "hemorraghed veins."
My whole body had these bruises. Due to an extra amount of prednisone, that covered or masked my real state, I was on the ball doing things.
He told me I could come back to therapy but wanted me to have a clear expectation of the situaiton; I was worse than when I'd walked in. Not by virtue of therapy, necessarily. I had fallen a couple times and had the concussions.
But the electrodes and sound waves done on my muscles would wipe me out for a few days afterward. Obviously, they stimulated the muscle and that stimulated my faulty immune system.
For the time being, his advice was to "sit in my adirondack chair next to my garden this last summer."
So I did. And that is why I only had two or three sunflowers crop up. And I struggled to get flowers in the ground and keep them watered. And I decided I better just be a rock gardener from now on.
Personal morale, and feeling of worth does tend to diminish if you are retired before retirement age. And the ramifications of that seem a little daunting.
Knitting hardly seems to amount of 'over doing it' but there ya go. I know I said this post was a Prednisone forecast and this whole yarn deal and adirondack chairs is part of it.
oh, by the way, as I edit this Thursday morning, I have a new taper in effect. 1 mg. drops every THREE WEEKS. Sounds like a much slower, much more realistic taper. Especially after finding out my adrenals are snoozin' like Snow White.
(for those who are new to this blog/post, or whatever; I don't knit. I just wrap it around wreaths and letters when I get up in the night or need to keep my hands busy during the day.)
Right now I am doing some adding and subtracting from this post because, like clock work, I am up at 3-ish. And it is so hard not to get discouraged.
My feet are really making me wonder.... I am icing them and then heating and stretching them. Then back to ice for pain relief. No smiley face here, yet.
So I come here, to my blog, working through the heartache of seemingly lost dreams! And the pain shooting from my feet, ankle, knee, calves. Maybe some Vicks being rubbed into bruises and aching muscles along with Epsom salts will cheer me up. I am wearing my boot to straighten out the muscles that get taut from injury and effects of prednisone on the ligaments, tendons, and so on.
So on the subject of fire, it [fire] actually has to do with a symptom (s)of the biggest, seemingly most important taper, off of prednisone, in my life. One that seems to hold be a crescendo in my life . Or at least be the reason why I am making homemade Christmas wrapping paper in the middle of the night;
Age might have to do with it.
A friend asked me or said: "Well, at least you have gone through it before." Well, sorta. Not at this age. Not with all the months/years being on it and not with an 11 year old. And on and on. And not after developiong Cushings Syndrome. Which is just a side effect of long term pred use. Not a tumor on the glands. But who cares? When it means the muscle melted and I went from wasting to a waist that caused me to split every which way. I look like Sally from The Nightmare Before Christmas with all her stitches.
Actually, fire is a good analogy of what I am able to do here, with you, Readers. Gather you around my conversation campfire. Who doesn't like to circle round crackling firewood out in God's beautiful countryside and listen to campfire songs and stories? Shrugging your hands into a hoodie sweatshirt pocket and perching your once bony bum on a log?
Remember camping as a kid? Or as an adult if you still can do that and don't mind making one and worrying if flickers of flame might land on your trailer. (padre) And maybe your bum is still bony and it is uncomfy to perch on the log but the comraderie is pleasant enough to not care about discomforts of logs or trying to squish into a place by sitting on the point of a pointy rock.
Sorry, Readers, I am gleening experiences I have had in the past around campfires. Especially of ones up in the Tetons.
We have a fire pit in the back yard and now the Campfire is really close. Like blogging, talking with you all as I report my Refiner's Fire makes for an easier and more accesible setting. Talking about it, and how I feel helps. And it
another fire analogy or symptom is how I actually FEEL inside:
Is it Crohns and the immune system attacking, prednisone, or prednisone withdrawal? Cause my feet hurt..... REALLY BAD. Symptom of Fasciitis?
Someone take a memo and ask my Foot Dr. or Foot Surgeon. I am too busy.
Remember on Elf when Will Ferrel decorates the toy store where he is hired? Getting a stress dose of prednisone in the ER is called prednisolone. And when you get that you feel like you were healed by some sort of Voo-doo magic. Cause one minute you can't talk or think and the next you are planning out Thanksgiving and Christmas from you hospital bed.
Except tonight, now that my body took what it needed from the stress dose, got some extra that kept it up for two days with little sleep and then tried to taper cause it is a toxic med, I don't really have the energy. Why? Maybe because......
Monday I got the flu shot and had to run an errand after not even being out of the house over the weekend. Let alone out of the vicinity of a chair or bed. But Dr. appts. have to be made. For me and J. Life goes on.... and requires you to show up.
Wed., after 3 hours of needed sleep, I wanted to talk to Padre about something so I got dressed. It wore me right out. I couldn't really talk about what I needed to talk about. I had to go back to bed.
It Confuddled Padre as to why I couldn't come run an errand with him but the night before at around 1 a. m. I was able to talk to him. While wrapping yarn around some cardboard in order to make a pom pom. It made him sad that I couldn't give him a nice foot rub while talking to him and mom. I showed him the bruises on my wrists and up my arm from just that day's efforts walking with a cane.
It still doesn't sink in for people how hard it is to say: "I can't."
Even emotional energy taps out the reserve of cortisol my body has alloted to it.
The day I tried to get up and talk with Padre, I had gotten a text from him about an obituary in the newspaper. I knew the person. I wanted to be there for my friend. It broke my heart to hear the news.
The funeral was in half an hour. I tried to get up and get ready for it. Pulled a nice shirt on (glad I'd done my make-up) but Once I started getting into church clothes I could feel my body say: "there is not much left here for the day and you have J. to take care of after school. He has a football game. " A crucial choice lay ahead of me: 'Go, and chance overburdening the amount of adrenaline for the day, or stay home and rest like my body needed. Desperately. I sat on the edge of my bed with skirt in hand and let the tears come.
First for my friend and her family. Then for the situation. I understood a little bit of the struggle the person might have had in her life as a mother. I understood her trying to be there for her kids when she had health hardships. We don't/didn't share the same life experiences, but by virtue of her life being shortened drastically, I knew that it had not been easy on her body.
* just talked to a friend. She is sick. I, of course, can't help her. I wish I could. She got the flu shot too and it has knocked her on her feet. She has some dinner arrangments she can't cancel. So she has to push through.
We kinda talked about being the 'Party Pooper.' Just today I had to have another one of "those talks" with J. even. I had set the expectation of what he wanted to do, had to do, and what may happen with my body. But that I would do my best.
I came up short. It frustrated him. It made me feel bad to let him down. Of course I wanted to be able to do such and such. But I could only meet him so far. Like with my friend, she felt pressure to still go ahead with the party.- she felt that it would be a HUGE waste of effort. Many women counting on her. The party at her place. She had prepared the food.
This may be sacriligious but can anyone picture in their mind Mary having the wedding dinner and running out of wine at a WEDDING FEAST! Talk about some serious panic, Readers! To have her Son step up and actually deliver help (his first miracle, I believe.) for something that could easily fall on the low end of the 1-10 scale of disappointing people, yet Christ still turned water into wine.
He delivered her mind from a lot of worry. That was nice of Him. And I am sure there are levels of analogy we could pull from it that warrant meditation beyond the small things and let downs we feel today.
But there is relief in saying: "No." There is some sort of strength you can glean by being firm in saying or not running faster than ya have strength. Cause eventually you have to pay the Piper.
And the sooner you can learn to love yourself for coming up short the sooner you can tap into the grace that is available to all who let the Lord carry some of this impossible and heart breaking burden.
What is yours? or ARE yours, Readers?
Do you have moments like this too? The desire to wave the magic wand and be something that would elevate your status in others eyes? Or at least not let them think you are that huge of a flake?
Do you wish you could have them understand? Can you let it go and not care what they think cause:
They are They?
Another quote given to me by a friend.
What does that even mean?
It took me only a second, but I figured it out. And it is profound.
It's helped me when I have had to say: "No. I can't"
"Wow, that aspect of my body is gone. Forever. At least here on earth. I can never change that aspect. I have close t
400 stretch marks that have torn my body apart.
The muscles finally gave way; I was ripped at the seams.
And Readers, that literally hurts.
My skin is so thin that rubbing lotion on it or scratching an itch too hard, can peel it.
It means that places like elbows or heels that rub up against things get rubbed raw really fast.
And those stretch marks hurt really bad. They call them purple Striae. And they can break open...
Our skin is the barrier from us and the world of germs, tears, etc.
Too bad my veins are attacked by my body in the same way. .
Those babies just can't sustain some things. Apparently, on of those things is knitting or repetitive stuff.
I know. It's "Freak of Nature" sitations I have mentioned. But they are real life consequences of a lifetime on prednisone, immuno supppresive meds, and a disease that doesn't have all the answers yet.
So on days like today, when I have to tell J. and other: "No." or explain why I flake out on them, I feel bad. I can't change this. I thought I could. If given the right tools, I thought I could pull this off.
The good news; I don't HAVE to. I can let go of trying to keep up with the pack.
I can set my pace and follow my gut so that I can be here for Jaden. Even if he doesn't see it that way right now. He wants me there on the sidelines.
Oh, did I mention that we lost in the playoffs? J. wasn't overly downtrodden. He played his best.
He had a good year. Wasn't his favorite year but he put his heart into it and plugged away at it. He did his part.
And I am proud of him. One thing that I guard pretty closely that ranks on the highest scale is our time reading together. Or watching a movie or comedy sketch on the computer. Those are tender mercies. And it is what I look forward to during the holidays. No homework. No sports. just hanging out with nothing to do but really learn. I get to teach and read to him. He reads to me. Or we watch movies.
Last year the best spot in the house was our bean bag. It was huge and fluffed and we cuddled on that and wathed those movies.
That's why I am getting things ready now.- preparing everything so that it can be a quiet magic in the house so when that window of time we can have together opens up, we have some magic going on!
In order for this to happen I had to be come back home to live.
Once someone replied to my circumstances living at home: "Isn't that social suicide?"
( I may have told this story before...)
I was taken aback. It was parental preservation- something that has ALWAYS come first on my priorities. To be here, for Jaden, no matter the cost. Sure, when you are single, working part time and living at home would appear to be depressing to a bystander. But when I was sick? Living at home has been the biggest blessing in my life.
I owe a lot to my family for the help they have given me. I am grateful that I have an intact family. It enabled me to come home and heal. To trial meds. To spend whatever amount of time I could with J.
Sure I wanted to date. But I had to wait. God's plan for me unfolded as I studied and figured things out. It took years for me to see this for what it was. Has there been heart ache? yeh.
Has there been doubt, sure. But whenever I truly looked at my situation and looked to my son I knew it was right that I didn't drag him into
So I didn't go to the funeral. I went back to bed. But I pulled up her obituary and watched her life Legacy. It was a great legacy. She did her best and it was enough.
Ached for them anyway.
After failing the doctor's orders to "try" a 5 mg taper every 4 days- and me going into it like some naive child or a pup excited to clamber into a truck and stick his head out the window or from the side of the back of it, with its tongue lolling out of its mouth.
- I am enduring a huge "mess."
And the end seems no where in sight.
Padre has said: "Well, it sounds like to me that you are going backwards, and not forward with this taper!"
ME: "That is how it works Dad! I went down too fast, my body reeled, then I had to make up for it by taking even MORE prednisone. In order to get off of it I have to taper and find out that my body can't/couldn't handle it and give my body what it needs in order to absorb that shock."
Padre: "How are you supposed to get off it? Seems to me you should have just stayed where you were."
Me: "good question. Except now that I went on Entyvio, I had to get off of the prednisone. Apparently it's the most toxic drug... blah, blah, hey will you cut more slices of the Birch branch so that I can make more Christmas ornaments?"
I have been on Prednisone, on and off, for a good twenty years and it still surprises me with its power and horrifies me with the gradual unveiling of permanent damage amassed over so many years. And it tears down my perceptions and even has opened my eyes to things I thought I sorta knew something about.
Were it not for family, good friends, and keeping my doctors on a tight leash, this very easily could be worse than it is.
As it is too late to turn back any clocks, I have to endure what it dishes out. And accept, if possible, the results. Many will read this or see me and may think:
"Wow, I'd never go on that. Or do that."
for instance- my body is starting to look really weird. The break down of muscle became too much and put on a lot of weight really fast and my body literally just split. I counted around 100 stretch marks on my right side one night. When I told my mom this fact J. overheard and said:
"So instead of counting sheep in your sleep, you count sheep, mom?" man, he is quick.
For instance, I would have not been caught dead swimming, in a swim suit, with the body shape before I understood.
The reason I accepted this fate about a year into a 60 mg taper and then an up dose to 60 mgs was that nothing else was working and I was wasting away. Yes, wasting away.
Three years ago my body seemed to know this when I struggled to sub teach and barely hold on physcially. My body was wasting away and something needed to stop it;
Actually, I think I was on prednisone and had been for some time, had tapered down from 60 or something and was at a min. dose.
I will never forget the days that led up to me feeling that I couldn't take another step further by myself.
I was sub teaching a kindergarten class at Westside Elementary. Standing outside as the duty around 7:30 a.m. I felt the cold whip through my light blue J. Crew wool trench coat. I wore a cute head band, warm mittens, and doubled up socks in some black dress shoes. I think I even had on a pair of pink long johns beneath my dress pants- which were still baggy. I was bone thin. The long johns didn't help as I was still freezing standing on the side walk. I smiled at kids as they came off the bus and dreaded the impending day being duty at each recess and after school.
I'd been fighting this weird nerve pain that seemed to make my skin "crawl." Well, that pain turned from crawl to a numbing feeling once inside the class. As I put the classwork up on the board I felt the pain crawl up my neck and wrap itself over my head. I walked slowly to the desk and sat down while the kids carried out their assignment.
Somehow I managed to be duty the rest of the day, end the shift, and drive home. Sending up a prayer to heaven that the van started.
Well, the funky nerve painwas shingles. It felt like fire. And it consummed me for more than the suggested shingle time frame of "a couple of weeks." It was 3 months of it. My parents looked on abd felt hopeless as to what to do while I tossed and turned on their living room couch with a "new" debility to add to the others.
Was it a random case? I looked at all the biologics and other big gun meds I had taken in the past- Remicade, Humira, Cimzia.... and there in small black print was the word for a roof top: shingles.
And that is the beginning of the beginning of my body going on auto-pilot with this disease, prednisone, and side effects of who knows what.
The last few days have been full of withdrawal and a feeling of fire again. Not shingles fire. But a burning just the same for some reason.
Why did I just talk about three years ago?
I guess I felt compelled to take you back in time because that is when my body put a bookmark in the book of my life. As if to say- I will get back to you after I get this mess figured out.
I was a single mom, still am, struggling to work while having Crohns disease. And failing miserably.
So often I would watch the gas tank get down below the quarter tank amount and I would scramble to find any resources of making money or doing things to help pay for the life J. and I wanted- one that invovled playing sports, going to camps, paying for jerseys.
J. and I recycled cans, I helped him mow lawns and when he was at his dad's, I did odd jobs to pay for the gas to pick him up every other weekend. It was a life my body couldn't sustain.
I will never forget taking care of one of the last yards with him. They had a dog. The yard was dry from not being watered so dust flew everywear and the bag had to be emptied every couple rows.
I was helping him to finish. It was late in the evening. Darnkness was all around us and I wondered to myself why on earth I was doing all that. For a mere 20 bucks? But I was teaching him the value of work, see? He loved playing sports and so we had to scrape and save every cent.
Luckily I had the op to help at the HS taking stats so that we could attend the bball games for free. Once a guy helped me do the stats for the younger HS team in the older gym. We knew each other through the coaches and me helping out. He was asking about religion and why I was still single.
I suppose the two go together. It didn't bother me that he asked. We'd been talking about life, me having Crohns, etc.
I guess, on the outside, I looked pretty, was nice, tried hard, etc. etc. My illness didn't seem to be interferring "too much with my life." What he didn't know was a slew of surgeries and being on prednisone was the only thing keeping me standing. I wasn't offended by the question. I looked at him and point blank said:
"You can't afford me- my nation can't even afford me."
I didn't mean him personally as he was in a relationship. But I was laying out one of the reasons my relationships hadn't worked out, had caused more than one guy consternation, and was perplexed that considering my health I couldn't even afford to work full time and find good insurance. The fight was more than I could bare. And I was living at home so it wasn't like J. and I were living in subsidized housing in a ghetto part of town.
I went back to marking the book when a kid made a rebound or shot a lay up.
"Really? Well, so and so has Crohns... but she is going to retire early."
That is one thing I have heard so many times in my life that it is hard to explain to someone that just because we had the same disease, meant squat.
It is like having breast cancer and someone saying: "Well, John had prostate cancer and got over it."
Totally different things. yeh, cancer is cancer by virtue of the name. His curiosity about why I was still "single" didn't offend me either. It did strike a chord though about friends who had inadvertently said something that hurt. I recalled being happy for a friend to have found someone who was divorced, but "could work." There was that word:
I had been doing it my whole life, tried doing it while sick and couldn't. Work being the operative word here, the word that made you worth dating, marrying; able.
I'd worked a paper route from the get go, paid for school clothes by Jr. High. Went to college. Got all the experience I needed to "work" and then ended up with a body that couldn't follow through.
Except, here I was, taking stats at a game after helping J. shovel dog doo-doo in order to maintain a some standard of workdom in the annals of life.
Back to my conversation amidst boys playing a ball game that one day they would realize was part of their life that at one time seemed like everything when, really, they would find out there are worse thing than running ladders, winning a game, and fouling out in the 3rd quarter.
And none of them would recall a woman, who took their stats for their coach to go over at half time in the locker room, and what it took for her to get there and why she did it at all.
Well, after not sleeping the other night, I got about 3 hours and then went until early Sunday morning. Being on a high dose of prednisone brings one awesome thing:
You can eat lettuce.
I love salads. So, around, oh, 5 ish I had a salad. Then within about an hour it hit: withdrawal from prednisone. My body just slowly gave out like a wind up toy slowly stops.
I have no idea why I am typing right now. My throat feels so heavy. My hands and feet are clumsy.
Like I have kitten paws. You can't do fine tuning work. Tying is out of the question.
Did I mention the burning. It is like your brain is scalding. A pulsing throb through out the whole body. A numbness. And yet you feel fire up your legs and arms. To the core of the body.
I put some make-up on and am trying to get cleaned up for some church.