Readers,
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!
AAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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!!!! ********
Dear Peggy,
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.
Best,
Amanda
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