I am waiting for my body to work so I am doing some R&R (Readin' n Ritin')
So I go to some of the different forums that apply to me and help me not feel sorry for myself. The photo is from a Christmas Past. And I have an amazing sweater on for the occassion. I need a new Christmas sweater. Something about being on prednisone makes appliqued sweatshirts seem cute. It should be included on the side effect list.
(sometime after all the prednisone/cushingness set in swaddling my jawline and before the hair had to be cut......)
Okay, switching gears here....
I have touched on the topic of fecal transplant in a post before and I am sorry I have to touch on it again during my relay of different topics some people put out there on forums. I can't believe this one... it used up at least half my cortisol for the day as I shot up in bed in disbelief!
One woman, who said she was, "freed from her prison of digestive issues", caught my eye. Then she went on to say that it was through the fecal transplant. Uh. Not that again. " I thought but kept reading. (This scared me when done in a lab, with a Dr. down in Australia. And I vowed heck no!)
(More of Kurt's stars, Lion brand yarn that resembles a Birch tree to me. It hangs on the door but I threw it in here to get the pic taken. The blue bird was a gift from my sweet grandma when I came home from my mission. Mini mission. I love to see the sun hit the glass at different times of the day. Now I know why older people like sun catchers. And the sun, for that matter. It's warmer and helps arthritis! All of these you have seen are gifts! So shhh.... I don't think my family reads my blog. Well, the turquoise one is mine. And I have a couple of others. Too, too cute.)
(see... how adorable is this?? The matte colors are really growing on me. )
This woman went on to not say that she didn't get on a plane and fly to Australia, but did it herself! And her donor husband donored the transplant material and she broke out of prison!
READERS! I know you didn't want to hear that but Oh. my word. !!!!!!!!!!!!!!!!!!!!!!!!!!
whew. Okay, I think I can answer some questions now. I hate to see people ask for help and it was years ago. So I am going to through out things to see if they help anyone now.
One young girl, only 24, lives 600 miles from home and is newly diagnosed. She is looking for any advice. I can only feel so sad for her. I don't even know what to tell her.
(This is a blast from the past! Here with friends from HS. I was so sorry to miss the reunion this summer.... I am front to the left and then on the back row are my childhood friends. From 2 on up!
Maren Petersen, McCloud, Cindy Olsen Wheatley Becca Rogers Brown, and Chelsea McClelallan. The Torment dubbed us The Celestial Five. For those who have Cushings- my tears go clear to the middle of my calves. Inner thigh and calves. I never knew how painful it could be. It's hard to see my legs at the height of their abilities and to compare myself to what I can not do now. I am using trekking poles to walk. Or a cane. I just never knew..... My eyes really have been opened to what can happen to the body, what it can endure, and have a gratitude for my belief in a Savior that will one day heal all of these wounds and I will be in my prime. I hope I can be worthy of it. )
I think of myself working in SLC to be closer to the top doctors, living with family friends and still struggling so hard because I had no idea what was going on. It was horrible. Many times I had to take my break in an empty cubicle somewhere, lay my head on the gray desk, and just fall asleep. Freeze and fall asleep. I was always SO cold. My throat hurt with strep or thrush. I never knew to call the Dr. about thrush. I didn't know what the signs of dehydration were. I couldn't keep enough fluids going.....
(the first wreath- I believe. All I had was an Amazon box and a burning desire to buy soft yarn from a quaint shop downtown that will teach me to knit when I feel better. That was a few months ago and I wasn't well then either. Eager to do something productive despite setbacks- but not up to learning how to make a sweater yet.)
I also didn't google like today's sick kids can. So being informed is a huge thing. And that can help you out. Remicade saved the day for me after a 3 year flare. And a week in the hospital with a lung infection. But my advice:
Move home? Yes, move home. That is my answer. If you don't live or have a network of family and friends within a two foot radius, you are in trouble and need to get where you have that support net.
So you can get a bit better or be sick and still do this.... coach little league or something.
Before you get worse.
(ME! Coaching! Before I got worse... But I coached and these kids did great! I hope they will always remember it! I recalled my first year of machine pitch! whoa! SCARY! And I recall having a couple surgeries this summer... oh, so painful. And that's when I went for worse to worser. )
Back to answering forum quesitons....
Aww- there is an 80 year old lady, named Peggy who just got diagnosed. She was able to walk three times a week and was an instructor of water aerobics.
(this birch tree slice is really pretty, I think. I am liking the earthy tones this season combined with *******************my yarn obsession and of course the stars!!!! ********
Wow. I haven't been able to do what you are doing for some time now. To have made it to 80..... I can only say that you have done a lot, are in good shape and, therefore, able to tackle this flare of Crohns with a healthy body. You have that going for you. Continue to take care of your bones by taking calcium and remember to get enough protein.
You may have to take up some different hobbies. This may be hard if you have been used to an active life style. Do you like to play card games or read? The public library became my best friend when I developed these problems. Do you knit or crochet? I worked on a bunch of Cross Stitch projects that I thought would end up in my home but they ended up being given away as gifts. They were all stitched with a tremendous amount of arthritis. It kept me moving and setting goals.
Photo history: photo of a cute doily that Michele from online Etsy store called: FiberArtCrochet. I glued one of the slices of birch wood from Grandpa's back yard onto it and boom! I love them! Just have to turn them into ornaments to go next to the snowflakes.
(It's a good thing I am only in charge of the humble birch branches and this decorative pine. along with a garland over the stove downstairs! Or I would have had to start making things LAST January.)
She only made five white ones. They can be used as coasters too. Hmmm.... maybe I should have her make some more so I can have the coasters as well? She makes other things such as soap holders, body and dish rags- how divine does that sound? A nice bath with a crocheted wash rag?? She is a great salesperson; sends them promptly along with a nice note and how to take care of them, and has a great personality that shines through her impeccable service. She takes special orders as well.
BACk to Peggy's letter...
Now that it is harder to read, I like to listen to music. Sometimes I can read a bit. And, as you can see, I started a blog. I like to journal. It hurts to write now but I need to. I also have to get those Christmas cards going. Do you enjoy writing? If so you could join a writer's group. Too sick? Join one online.
(So the idea here was to spray paint the darker parts white and wrap them in soft white lights. For our Nordic style Christmas which can only take place on one side of the room! I came into the room after grandkids had been in there and lo and behold- A gift wrapped in gray and red was in the tree branches. I gotta kid proof the basement now. I dont' know if that is possible.
Peggy's letter cont'd.......
Technology is a huge blessing. Text messaging is hard to do when you are arthritic. Apple has ipads that you can text from and not have to deal with the tiny letters. Get your friends to learn how and then you can have someone to talk to when you are not doing well.
Letters are the best. Especially when you don't feel well. So sending them to friends- who I imagine you have some that are young and old by your activity level, would brighten their day.
If you happen to get on some medication that makes your throat sore- remember to take probiotics, tell your doctor, and get the magic mouth wash. I also would order some throat losenges from this place in Italy:
Amazon actually sends them. Yay! But this is where the magic starts. I wish you the best, Peggy. It's hard to see older folks go through difficult health problems. I would find the best doctors, put them on speed dial or next to each phone in the house, stay hydrated!! Pedialyte for children has less sugar and seems to help the best.
Do you like to do any research? Just now, Peggy, I was looking for clear or copper colored mesh to hold my faux fruit onto my garland and I ended up on a site for making your own produce mesh bags. It made me feel guilty. If you feel guilty easily, don't look into blogs about how much waste you produce. (get it? waste/ produce?)
(This one has one of Piggy and Dirt's stars incorporated into it. I had NO idea that thousands of people had the same ideas as me. I thought wrapping yarn around something like a wreath or cardboard was a prednisone thing. Pinterest showed me that I am not unique. With my yarn idea.)
Finally, if you have to go on certain meds do a lot of research and then write everyone who knows you so they will be prepared if you should start blogging or something.
(Me in years ago during the summertime. Not winter. And not with a Moon Face. I am missing one of my chins here.... Right now my comfy scarf is helping me to get cozy. )
Well, I am finally able to crawl on here and write something about something.
Hmm... I had something on the tip of my fingertips but can't recall it. Let's just say it is a good thing I started to get ready for Christmas, in August. It will take until Christmas for me to be ready for Christmas. It takes me forever to do things anymore. Getting ready. Slow. Making a decision. Slow.
Walking- slow. Unless I slip and then you see some action.
And the camera shots.... it's the usual sob story. I am not feeling awesome enough to pull it out. I know this sounds crazy. But the ocular pressure.... okay, okay. NO more excuses. Well, I will have to be the camera for you, Readers. For now. Just hold on. We are lucky to post tonight.
YAY! 11-23 is the day I took some pictures and uploaded rather than take pics from previous posts or from friends and their adventures!
(one of the wreaths I made in this prednisone hoopla sometime back... Yeh, yeh, Someday it will probably be on a shelf at the DI. But I can't tell you how grateful I am to be able to MAKE something- to create
Good thing I started getting ready for the holidays back in July because I knew these months would be hard. Well, they have all been hard. But tapering would be on the table. )
Oh, I grabbed my typewriter earlier to type out my Christmas message and the ribbon is dry. The ribbon needs to be replaced. Guess that's what happens when you own a really old typewriter.
I will have to find someone who can take care of that ribbon or leave the typewriter for looks.
I sorta liked that it could type out something a few years ago. Has it been THAT long since I wrote upon it?
I think I am hitting the pinnacle of this infection. HOwever, my ears are still hurting but it is only day two of the second anti-biotic. VERY CHILLY here in Idaho today. I ended up in flannel jammies, double by socks, and put on a favorite scarf. And waited. Until the chills stopped.
(yet another wreath! I had to do something with my hands- notice the birch wood slice? Thanks to padre I was able to try to draw on them with a wood burner. Don't recommend it to people with thin, prednisone skin. We need a new door- Or at least Padre should let us paint it! It would look so much better and be fun. But it would be a lot of work. And he's got lots to do as it is. )
I'd told a friend that I loved that point when the Theraflu actually has kicked in, the honey is drizzling down your sore throat and your head, despite wanting to pop, feels that comforted, respite place.
Sure you are wearing outdoor clothing; scarf, knit hat, and your Sorels; but all is well. Right?
Oh, and let's not forget those congested orafices called sinuses in your face. Those are pulsing but at least you aren't in the ER getting fluids, right? Which leaves you plenty of time to read reviews.
Such as some for socks. One lady, whose handle was "sock lover" owned a pair of Smart Wool socks for 7 years, Readers. The name of the sock: Margarita.
(Yes, I added an embellishment I had found that remided me of the clipboards J. and I use for homework. I figured my sister-in-law could take it off or maybe just attach some mistletoe?
Look at my felt rosettes! They required the hot glue gun. And I recall some major pain. Can you believe just wrapping yarn around a wreath would blow veins in my arm and wrist? )
Well, I googled them for her and they still make them.... just not on that site. If I can get 7 years out of a sock- heck, that's worth it to me! But I think after all my research, while bundled up in a lot of winter gear and sitting in my chair, Buck, I am going to buy the ' Darn Tough Vermont. See if it holds up to the reviews.
I have to stay warm.
I think that is why I subconciously have wanted to just work with yarn.
My feet need wicking and I need to wear dumb braces. Not on my teeth but my feet. The wind has pretty much melted the snow down, made it so J. couldn't vacuum my car out, and made it seem dreary. Only dreary cause I was so looking forward to him cleaning out the car!
With the snow that fell on us, it felt festive and fun. Sorta. As festive as one can get when you are unable to participate in festive activities. That is why I had the time to take in a review or two. I need to have J. read to me shortly. He's been great to have around lately. Well, he's been hiring out his services and that means he is wanting to earn money for something.
Well, I didn't duct tape my hands together, like I mentioned I would do in the previous post, so I was able to try and make a wreath involving a hot glue gun the other day. The day I promised to NOT do anything in order to save valuable energy. (no worries, it wasn't this one I made)
(Also see past post on my glue gun experiences while being on prednisone. I have paper thin skin due to prednisone- not a good combo. And I haven't had any desire to use a glue gun until my skin was really thin. So the worst time ever to choose this. )
However, having my hands free meant I could make it more easily to the bathroom the other morning after about three hours of waking up (after just barely falling asleep), taking my prednisone and needing to go but had to wait until my body could get there! Say that three times really fast!
(That is what a prednisone taper can do to you: Keep you unable to move until you "unthaw". And making run on sentences. )
Once I was moving I knew I had to keep moving. So what did I do?
( I wish I could show you! Can't because taking pictures right now is too much.)\
(11/24 post of Piggy and Dirt Polka Dot Star! Love! And, Yes, I hung all the things you see on my wall. Did I mention I want a drill for Christmas? A light one.)
Besides throw in some laundry, which wasn't smart cause it is heavy and hurts/blows veins but I was desperate; I crafted. Which is another prednisone side effect to those new Readers/Patients, etc.
I took the sliced Birch tree circles (from my Grandpa's tree and the neighbor's next door when they chopped theirs down) and made a small wreath out of it.
Cardboard and the glue gun. Yup, I pulled 'er out. Again. I had to see if it was true about this one wreath a blogger said would be taking a looong time to create a million rosettes and she promised it causing over 200k glue gun burns. Which was the part that sold me; the glue gun burns. Because only doing acts of stupidity can you really achieve the full gammit of Prednisone-ness Bliss. So I tried to make a rosette. I pulled a book from the shelf. Don't worry, it was an old one about Business Law; tore three pages from the index and drew a cyclone on it . Then I cut along the lines, started from the outside in and wrapped it tightly.
This was the part where the firing, scalding, lava hot glue gun came in handy. Guess what! She [the blogger]was right! I burned myself three times and it took about five minutes for me to get it how I wanted it. Which was perfect. So I had and am in the process of making a critical choice. Do I make a zillion of these or just 3? (to go on a gift for cuteness sake)
I guess I am going to have to expect to finish it by next year's Christmas if I go with the zillion and all the burns. Oh! And now my return button won't work on my computer!That's right, Readers! This laptop has done its best. And is now apparently done. I was even going to share with you what the Survival book said in the first part of his book... (Mike Hawkes) But now I'm too discouraged.
Ah! I fixed it! (this was a few minutes/afternoon later, Readers. That's why I went back and added some stuff up above and I have the return button working. But now I am too tired to write what he said. It is evening and I am sure i used up my allotted cortisol just talking to Padre about technology, Nick at Best Made Co. about how axes are made from Appalacian Wood and other cool things, and making sure to drink a ton of water. From a mug. That I spill no less than five times a week in my bed. Because I cradle it to me sometimes and keep trying to push fluids..... I know I should just get my camelbak out but that is annoying to clean when ya don't feel well. ugh.....
If you are tapering from prednisone after a "short burst" be ready for some pain. I know I have told you all this and those of you who are here to see the wreath I made are sick of hearing it.
Apparently ibuprofen helps. I can't take it cause of Crohns disease; makes ya go into a flare. Which, if you are a Crohns Diseased Reader you also share in this lament. And if you are dealing with asthma/asthma flare it sure would be nice to have the relief to those muscles involved.
It's a different day than above. It's early morning. One of those wake up and feel I made it and find out it is only 2:30, mornings. I have the racing heart. Not the one where you are nervous to run in your relay track event in junior high, but the one where you are just minding your own business and prednisone decides you need your heart to start racing like you were getting ready to get into the blocks for your track and field event.
It makes no sense. Whatsoever. And it hurts. Sure it is handy to have this response before running your race. It may actually help! But it doesn't help when you are given this random trial at least 50 times a day. It makes you have to settle it down. With meditation. Or possibly some yoga. Breathing slowly.
Readers, right now I feel like my legs have been beaten with a bat. I think I need to eat a banana. That bone pain is excruciating. And my feet. And it is sub zero outside. And inside my feet! Why? Prednisone.
Another horrible feeling is while one tries to ignore all this and go about all that, you have this feeling of being pushed forward. Going on fast forward in your brain because of the prednisone. But also this odd feeling of someone kind of pushing you in line and you can't move more than where you are so you are trying to stand your ground with someone trying to push you off balance.
As if you were top heavy and coming down a mountain way too quickly wearing a pack that is way too heavy and being chased by a Grizzly Bear. Along with this predicament prednisone places you in, there is this rushing feeling of what you would like to do. Or craft. Or just set some minor goals like attend Notre Dame. Or fill out scholarship apps when you are already done with college. For now.
(a cute idea from years ago. during the fall)
Once off of prednisone you will look at some of the goals and wonder what you were thinking. Heck, you can still be ON prednisone and trying to eat your dinner from a semi- sitting up and sideways position and wonder: "How did I think I was going to make Thanksgiving dinner when I can't even eat sideways?"
A lot of women may ask themselves that question whether on prednisone or not. In fact, I am sure many women are already developing shingles through out the United States as they try to get ready for Thanksgiving,.
So I am up dealing with things on fast forward. I have looked at several wreaths online and thought how neat it would be to make some along with finish a pillow case along with start a gift for J. out of all his old shirts that he loves and won't let me give to D.I. or those in need because they have sentimental value.
And I hurt in my chest. This asthma thing along with the racing heart is uncomfortable and I can't find a comfortable spot. So I have read some. Looked at the Verizon bill Padre left on my dresser. and tried to start some Christmas cards. I am at a loss of words. Which is why I found that one quote to include in all my cards some posts back because I knew I would be at a loss around this time of tapering prednisone.
The one way I feel on prednsione that I can't get across to you due to the ADD induced side effect, is that it makes me feel mentally s-l-o-w-ed down. Yes, I said I felt like I was on fast forward. But the weird thing is it makes you feel really slow too. Almost as if you have been struck dumb like in ancient scripture or something.
I will do something that someone will say: "Hey! why don't ya do it like such and such!?" And I will sit there like Forrest Gump and blink and wonder the same thing. ESPECIALLY when it is something so obvious and logical. I feel dumb in those moments. Really dumb. Not embarrassed. At least not all the time, but literally dumbfounded. My brain reaches into all its stored memory, grasping for either a word or a phrase or an ability and it. isn't. found.
Talking with people I will come to a word that I can see in my head, but can't say. This really frustrates Jaden. I have to point at it or describe it like a game of charades. Or use this, that, and thing a lot. Which frustrates me. And I am forgetful. I will flip a time of an appt. in my head. Or the spelling of a word. Over and over. Phone numbers or addresses I once knew; gone. Off by the last couple digits. This happened to me when i worked as a broker years ago.
I started to notice I would have a form of dyslexia but with numbers and flip them. Usually in the last four. Is that not weird?
The feeling that I hate the worst is knowing that I won't be able to do what I have been doing. Soon. I will go back from being able to walk, write, read, or whatever and be in my state of inflammation before I was put on the prednisone. I won't be able to accomplish the goals I wrote down for myself when things were chipper on prednisone. Or the ones I wrote before this disease took its hold.
Which brings me to the fact that Time is important. And I realize that I actually have all the time I need to get done what needs to get done. The universe just works that way. After a few years on this trial I have come to see that there is a greater picture than the one I have painted for you.
Yeh, I may have to give up some things that would have been nice to do or have, but eventually, in the end, I will be compensated for it. Already seen it happen in my life over things I thought for sure would not resolve themselves and then they did. Many years later on some of that. But they did.
I know that my legs have felt this horrible before. That I have been very weak and unable to walk but slowly over time I regained this ability. Usually it isn't on my time table but I did. Heck, I was able to shovel a side walk a few years ago! (wait- I was on prednisone when that happened so technically it was with the help of prednisone. But still!) I guess I didn't realize the prednisone would stop "working." That the adrenals could handle that sort of thing on and off for only so long.
Which is hard to think about right now. There are just some things I want to do..... like go sledding. Or skiing with J. Not just ride in a car up to the lodge and sit and knit (can't even do that right now)
But really SKI! Really get out there and sled down a hill and climb back up it.
(J. is way taller now and doesn't even need help hardly! How did this happen so fast?? Wow. )
So the irony of this evil drug is that despite feeling ancy and my heart racing and ready to go- I can't go. Anywhere. Except here. I can make things and create a feeling and atmosphere for the house and yard and for my son. I can help him with his homework and read. But I can't volunteer. Or sub teach. Or even finish some projects cause I got too many going and left them for Padre to inherit.
Wish he'd inherit this post cause I'm done. bluh. I've got that feeling like you have when you need to sweat out a fever. Maybe next time I will get around to writing from that survival book.
Well, the Survival book I bought J. and I to read has already helped us.
I mentioned in the last couple of posts something about what he said about attitude and not wasting your energy on negativity cause you are gonna need it.
(Picture courtesy of Dan Gregory- say this in your best Irish/Scottish accent then it's fun like the color and look of these buildings.... thanks Dan. When I am sick, art helps me work through it all.)
Now I will just quote it word for word cause his words are better than mine. As are Dan Gregory's pictures. Why? Well, for one he has already taken them and I can just copy past from his facebook page. And 2. They are amazing and I can't hike to those places unless a heli takes me.
(this is really cool, Dan, ......... good thing I can just put his photos in for now. whew. I am tired already cause typing hurts the chest cavity that holds together everything underneath that is not holding together. weird. I know.)
So three or four birds with one stone- you, Readers, get a visual. Dan's photos area amazing,
And that makes it so I can focus on
and not taking pictures for right now.
Why? It' s D day. Drop day. Yup. That asthma attack and flare I am having we are seeing if I can go from HIGH to the original at the beginning of this week. In two hours I could be unable to lift my head up.
So let's get copy pasting shall we?
(this reminds me of when I threw shot put. I was so embarrased to throw. My bones were giving me havoc back in Jr. High and so I had to stop running the 400. I could throw pretty far so I did that and actually went to state. I weighed 127. One other gal from school, who is not a vet and looks to be leading a very active life style, was strong too and she threw. Thank heavens. I didnt' get how some of the BIG girls could throw so dang far. It's all in the wrist. shh. don't tell.)
(Dan's shot put at the Highland Games is a rock it looks like. But he has the form. Good job, Dan. If I had never gotten sick, I wonder if I'd have done this..... hmm. dunno.)
Oh, and writing Hawke's (the Green Beret who wrote the survival book) words.
I would have J. do the typing but he is shoveling off the tramp. Actually sweeping it off, a shovel would ruin it. AndThat's right, we still have the tramp up cause I thought we had more
it snowed. !!!!!!!!
We got DUMPED on in IF this week. Which is fine except when you have a ton of errands across town and everyone forgot to slow down a bit on the first snow fall of the year and some either drive off the road or rear end you. Lots of that happening.
It just takes that first snow fall.......It doesn't look like it will melt any time soon- it's frigid here. Minus something. I put two extra blankets over me this morning cause I ate and that makes my body cold.
And Targhee opens in 5 days J. tells me.
I am getting shaky, Like I drank way too much coffee. Great. I don't even drink coffee.
(cool enamel ware from Bestmadeco.com)
We gotta hurry this post up.
Cause it isn't "mind over matter" in the case of prednisone. You just use up your daily allotment if you do too much. you should have minded matters.
So ya gotta really pace yourself.
Where is that survival book?
* Okay, I found it as I come back to add to the post at 9 pm. I have made it through the drop day. Tomorrow is when it will REALLY be bad. My feet are burning. I can feel the fasciitis pain in a big way. I am grabbing the ice packs. See bottom for page 31 of Hawkes book under the section called:
'Preparation at Fort Living Room.'
(gonna need some courage in the next little while. Photo courtesy BestMadeco.com)
Welp, J. took it to read somewhere and it is lost in the vortex which is our lives. I just got an email from CEO, Peter, at Best Made Co. (don't worry it is just the computer generated one)
But he said he'd send an email each week to help encourage us peeps to get outside and around a campfire; he'll keep his end of the bargain by making the best products and then he wants to know how we use them. Or use our time.
Time is an interesting thing.
I recall a time when I had never been on prednisone. Did you know the withdrawal effects are compared to heroin? I remember a time when I learned about drugs and not to do them. So I didn't. Readers, if you are anywhere within the sound of my raspy, Doc Holliday coughing, eroded gastro tract voice: DO NOT DO HEROIN.
If it is true that the withdrawal is like the withdrawal of that..... you will only find the most painful experience in your life. Prednisone saved mine. The price I get to pay is going through something I was taught to stay the heck away from. It seems cruel, eh? But not really. I owe my life to the small little tablets that some have called:
Satan's Tic Tacs.
I laughed so hard when I saw that poster on pinterest for auto-immune disorders. Then I gave it some time to sink in and that just seems dead serious.
Tic Tacs are so good. One isn't enough. But if they whatcha- mah- who's--- yikes. That would be- THAT IS
one nasty tasting Tic-Tac. No thanks. But wait! I HAVE to freshen my breath with these babies from now til a loooongg time! Why? Cause my adrenal glands have been on them too long.
(love this journal)
I know none of you young Readers will listen to me say:
Stay Away from Heroin! Or Stay Away from Drugs!
You'd say I was a hypocrite or something. Readers, I honestly know that prednisone withdrawal is so painful- it actually causes pain before you withdraw. Bone pain. It eats at the muscles. It does something to the hippocampus.....
It hurts. But it helped me stay alive...... how can I hate something that gave and gives me a life?
How can I hate being able to watch my son?
Neal A. Maxwell said our last relationship with adversity will be gratitude. Yes, one day I will be grateful for what I go through today. And tomorrow. And yesterday. And the last twenty years of known Crohns Disease.
*Thanks Best Made Co.
P.S. if you or someone you know or your dog has Crohns- it is different for everyone. And I have been on immuno-suppressing meds that are relatively new for twenty years and am suffering from the ramifications of that.
And the rams of disease prorgression, where it is at. I am on a new med now. It was made in Japan.
No one on the net is able to tell you or I yet what it does. Kinda like on the new Spiderman when the guy doesn't know how his body will take blood type of Peter's lineage.
Which makes me think of the Cushingoid Syndrome and how my body looks these days. I wish I had a swimming pool of my own so I could go swim. Not cause I am embarrassed of my striaed body. I am proud of those bruises and marks- those were hard earned, Readers!
okay, that was earlier this morning too. Before the shock my system took at only getting the dosage I was at 5 days ago. It is so hard to go from something to nothing. It is painful. I am trying to take it a moment at a time.
Fast prednisone bursts are great at first. I could finally breathe through the horrible lung problem. I was so grateful to have those breathing treatments. I think of all the things that I have suffered and then quickly recoved from was the gift of good Oxygen. It was almost wet to my palette..... I cried tears of gratitude. So glad I went into the ER for help cause I was struggling.
I am praying that I don't run into any problems in the the next 24 hours that send me back as far as the asthma goes.
I have the prednisone headache. I feel a lot of the places that I injured in the last few weeks.
I need to upload some funny pics of the skeleton that we took so I could recall where all I was hurt.
I feel confident in many of the nurses, doctors, P.A.s that work for my good.
(let's give a good shout out to all those back east on White Street who are making things us Idahoans love for the outdoors. When ya can get out and around a campfire. )
One nurse had a son going through being on prednisone and tapering and she just "got it."
I have been blessed to read a bit from other's experiences. No two are alike but we are all human and our suffering hurts no matter where it comes from.
Too tired to write what Hawkes said. I am just going to use that duct tape trick I was planning on using on J. to keep him from snooping out gifts and use it on myself. So I can't make any more wreaths, ornaments, or write. I just have to lay here and let my adrenal glands remember what to do.
Photo History: Well, I don't know. But I found This photo from: lifewithcushings.com- Danielle Resenski has endured so much and she has a lot of information that she has provided us folks on her site.
This photo is one of them. Poor dog!
She has even spoken at an Ivy League school to empower future doctors, endos, and future professionals about what to look for.
So, Dogs and horses get cushings and this picture is I wish I had this dog's courage to stand for the photo shoot.... I am really impressed with this blog and the great information that the blogger has provided.
Back to my blog......
This morning I awoke to a half viewed video on the effects of gastric acid on the vocal chords on my lap top along with a bunch of different files for different things I am studying. Vocal chords are fine by the way. Sinus infections, asthma, and acid from the gut all play a role in raspy voices. But my chords will be fine and I will be singing off tune again shortly.
However, my search falls into that category that I said I would tell you every so often of:
'What I googled,'
As one of the high lights I could do like Dave's "Top Ten" or Ellen's, uh, when she has people send in what the smart phone edits for them, what does she call it? -hey, that gives me an idea....
(P.S. I hate having to edit my text messages for my smart phone mistakes...)
(photo courtesy of Dan Gregory. A random pic of him on Aconcagua)
Anyway, I am writing to tell you that a sore throat and sinus infection can be an Entyvio side effect, can lead to sitting up while sleeping; needing a hose to clear a pathway for air and is really, really not fun.
So, "not fun", that the recommendation to "gurgle salt water" may have you simply reaching for the
that are meant for sore muscles in the bath; applying to bruises with Vicks to help circulation and pain, and to help with Sitz Baths and gurgling the diamond sized granules to pull the junk out of the throat.
Btw, do you even know what a sitz bath is? I didn't and totally nodded and lied when my GI asked if I did. (this was years ago but I'd had Crohns for some time..... I just figured you put some Epsom salt into an inch of water in the bath tub. Nope. Sadly that is too easy)
Sitz Bath Definiton:
these are something the GI tells you to do- or an OB after you have a child because some damage to both places took place, and you just nodded like you know what you are doing. Like you would know what to do when you left the hospital with a newborn. Even if you did graduate in Child Development. Why don't they send nurses home with you on your first one!? Just so you don't get so stressed out??
So ya lie that you know what a Sitz bath is, When you didn't. Here is what it meant and what I should have done.
You have to buy a 20-30 $ Plastic Basin, sandwich it inbetween the seats of the toilet, fill what looks like an IV bag but flimsier, with warm water and Epsom salts, hang the bag from a high place in your bathroom and connect it to the basin. This too looks like an IV pole.
Upon completing these steps you are to sit on your basin and water will overflow through a gap provided around its edge and overflow into the toilet much like the holes in a sink or tub. And this si is part of Sit "z" in "Sitz Bath."
Vintage Norway Poster that I would love and reminds me of their saunas... which are NOT sitz baths.
It isn't a true "bath". Which throws people. It will take TWO times of filling the Epsom Salts and the Warm water to add up to TWENTY MINUTES of sitting. If that is what your Dr. has ordered. Which makes you wish you could take a bath. And that is why they call it a Sitz Bath. Because you have to do this 3 to 4 times a day to help promote healing.
(Hey! A Norwegian submerssion in cold water may take the place of the Sitz Bath- and just HEAL you right there with cauterizing cold!
(taken from roomstravel.info of some Finlan Swimming...)
Another reason they call it a "bath" is because you will need a book to pass the time. And most people enjoy a nice paperback book to read while taking a bubble bath. Pick a book no one wants to read. But guess what! They should cause, No one Left Behind (get it? Behind? ) is an awesome book about preparedness in an emergency situation. It is about a hospital's handling of Hurricane Katrina.
(I know, I know you won't read it based on that. Nurses, janitor's, patitients, etc. all have quotes in it. I don't know if they have Ebola quotes in it but it is about Hurricane Katrina and one hospital's bad A approach to the whole thing. I love that I said that: Bad A. It's ranks up there to deserve me trying to swear on my blog.)
Where was I? Aw vocal chords. Guess what? They are affected by prednisone. Yeh! I know I totally left it out of last week's analogy up on Everest.
(This is what it would look like. But this is Dan Gregory, not me. And it's a real trip and not an analogy of Everest. Have you climbed Everest, Dan? hmmm. I should ask him in person. )
Your VOCAL CHORDS are affected by the stuff. Not just your hyped up Everest trip but prednisone.
When I went hoarse after what I thought was mere drainage and sinus congestion and debated just gurgling the Epsom Salt Crystals, I experienced the point in which those things, along with sub 2 degrees weather and asthma collide:
An "asthma attack" is not fun!
In fact, it isn't. It just makes climbing Everest pretty darn miserable because if you were on top of there when it happened- your rescue inhaler wouldn't work. Too cold. So remember Apoo, the fictional Nepalese guide you acquired through a fictional blog to help you summit Everest in your attempt to compare it to tapering prednisone? Well, he comes back to life in this post and says:
(photo courtesy of Dan Gregory on his Aconcagua hike. I had a friend go there when we were hanging out and I was sorta scared for him. But he lived. )
"I left your inhalers along with the extra oxygen by Green Boots! The place I lost your Padre's McManus book! " he says downtrodden. "And your Epi-pen won't help because it is frozen. But you just need more prednisone is all! It will help you with the delivery of your child, the speed at which you can get around the mountain, and set up your tent. At first!"
(Dan Gregory and his photos of great vistas have inspired me! Thanks, Dan)
And he will nudge your doctor acquired from Kathmandu who has amazingly figured out how to get a vein at this altitude and fill you full of IV prednisone. Or Solumedrol. What????? This truly does help with what Apoo says you gotta do. And apparently is part of the tapering prednisone package as you have been coughing with your infection and you are basically just wheezing through a straw because your lungs are diminished at the altitude you are at and should have taken into consideration before you climbed your analogy. And before you fell. And before you went to the hospital to do labs because that is where you sat parked and waiting to get out when you were hit by a truck.
Back up on the Everest tapering of Prednisone story from a previous post, you now have to endure a quick dose of prednisone which makes you have to go HIGHER up on prednisone. In order to get off of it. Which makes no sense. And you can't have a sitz bath at this altitude because the water is hard to melt over a small stove fast enough before you have to get up and move three feet and pitch your tent again.
(taken from sometimesinteresting.com)
And a frozen Sitz Bath just doesns't work.
So, Readers, I am out of ideas on what to make us do on our fake Everest trip in order to liken it to a mountain expedition and how hard it is to taper prednisone. I guess I could say you get bottle necked on the Hillary Step and end up making your own steps.
I could throw in an Avalanche?
But then I would have to read about it from some climber's or Apoo's fictional blog.
I could rack my brains for something funny. But that isn't happening after the Dr. ordered me to add not only more prednisone but an inhaler to boot. And rescue inhaler every four hours. This is starting to sound like J.'s sick days.
Speaking of J. -isn't it lovely that a plus sides to having off-spring is that you have an immediate servant?
Well, after teaching them to eat, walk, bath, dress, learn a couple languages, clean up puke from orifices like your ears and from your long hair you cut recently cause on prednisone.
Which you'd grown from being really long and pretty from the last time you were on prednisone. Of course You have to teach them to work and THEN you can tell them what to do when they say they want money.
And that is when you have an immediate serf.
Just pull out the "To Do List" you wrote before giving birth, heck, the one you wrote in Sr. Year Honors English Class! And have them start doing that! They need their youth for the goals you put in that letter!
And pay them.
I know! It makes them think they should graduate with a Master's just for money... Just don't tell the minimum wage right now and they will not know the difference until they apply for a job at 16, and then you an tell them they are earning less due to inflation and bad financial decisions made on everyone's part.
And, Readers, if you see your neighbor mowing their lawn after an Asthma Attack+ Prednisone Rescue, don't stop them just because it snowed a couple of inches the night before because Padre's mower is industrial strength and can run through anything. It may as well say it is fueled by Prednisone."
Your neighbor might not recognize you are trying to help, and don't realize yet that prednisone is a
big band aid
and they still have ALL their symptoms. They may possibly have amnesia, be mis-informed and told Prednisone works like Voo-Doo magic which they contracted when they flew to Dallas on a business trip and decided to go to the hospitals instead of the Alamo for a tour
So now, back home, they suddenly felt like mowing in the snow to pass the time before the holiday rush.
Yeh, before they coudln't walk and they missed it so much, they wanted to mow the lawn using their Trekking Poles and singing through their face mask used to block the hail storm beating them in the face and not necessarily prevent any allergens worsening their asthma. Did you know that asthma allergens are in the winter months too? I sorta thought it was Spring Vacation for Asthma... but I guess not! GREAT! Just a tid bit for all those in our family that have the bad gene. And for the nephews who are allergic to their animals. And the kid of mine allergic to his job as a mower.
Readers, this shot of him by this mower has more stories and never gets old to look at it. I need it framed. His cousins look on in wonder..) &
Because the Dr. ordered that the Serf-child can't mow due to his allergy to grass and his sickness, your neighbor may be desperate to get the grass winterized before the REAL Idaho winter sets in. None of this cold weather, "hey, it's a good day to wear one of those [cheery chemo mask]" moments.
This actually happened today folks! It is SO cold in Idaho, so it is perfectly acceptable to say to a masked person:
"Hey, good day to wear one of those!"
(this only blocks out dust and maybe some cold air. not the one I wore. But mine is cute.Upload later)
*I am Idahoan and don't mind comments and ya know that one made me pause, cause if you are needing to wear a mask to keep from getting sick; I don't know of many 'good days to wear it.'
Unless it is 2 below Zero.
Then, yeh, she had a point. My cute and cozy fun mask Care sent me a few years ago, was perfect. As I hadn't broke out my fleece scarf yet.
And the air is
Which is hard on asthma. Which I had an attack the other night and J. helped me realize it was an asthma attack. Thank you, Son. You are the best.
And thank you lung specialist who gave me breathing treatments.
Oh, my. Air is right up there next to money, ya know?
Ya just need it.
So it was a good idea that
and not get yelled at in some NY city fashion, or roaded with rage like a Utah driver for driving the speed limit in the construction zone. Yup, we Idahoans don't care if you comment on our mask wearing. I don't. Don't be afraid to look and say hi. Rather than that "look" then quick look away cause you don't want to stare- well, ya do, but not be rude. We all wonder what people's deal is. We care that's why. And we don't know what a person is doing and inquiring minds wanna know so that we can care..
So you will have to teach him how to do things that you want to learn to do, like sewing a quilt for instance. Or how to do origami. Or wrap Christmas gifts and draw cute things on the packages cause he will be bored and have energy on prednisone. You may consider taking him to Driver's Ed so that he can run errands for you while you are tapering off of prednisone, pioneering Entryvio, and prepping for a really expensive trip to Mt. Everest.