So, I got a little testy in one of my Facebook support groups for systemic sclerosis this morning. A member of the group kind of disparaged me and another person for not being positive enough. It was “you need to refuse to let scleroderma define you” in response to the first person sadly saying that she missed her old life, and me giving her an online hug with the comment that if only a positive attitude was enough…
In my defense I had just experienced a Kaiser employee visibly reacting to my lack of wrinkles. As in, wow, that’s great! Like not having wrinkles makes this all worth it.
I lost another 4 pounds at my last check-in, which is concerning, but the nurse was thrilled for me. Me, I was a little teary at the continued loss.
Um, people… do you think that you might be a little shallow here?
I was out on the deck/catio with the cats drinking my morning latte when I hit this emotional wall, and after I had fired off the somewhat testy response, I spent some time in the garden. There were my roses, blooming like the utter champs that they are.
This rose is looking great this year. Never before has the plant been able to hold up the blooms without the weight pulling the stems over. The problem is our semi-arid climate with hard winters; the plant grows back from the roots every year and it doesn’t have time to put in enough supportive tissue to hold up the blooms. This year, with all the rain and cool weather that we have had, the plant was able to put in enough of this tissue to do the job. The tissue that I’m talking about, a type of ground tissue, is called sclerenchyma. If you’re ever snapped a celery stalk in half and pulled out the strings, you were pulling out sclerenchyma tissue. This tissue is made of dry, hardened cells in the stem of the rose and I suspect that the “scler” part of the word is of the same origin as scleroderma. Look at that. The hardened cells are doing something good for this rose!
In me, not so much. Things have been a little difficult as my poor heart and lungs are not benefiting from the hardening and thickening going on in the cells and tissues of those organs. All of my tendons are seriously pissed off at the moment. Edema has become a problem, and it is becoming increasing clear that I need to stay on oxygen 24/7.
That’s my arm with the imprint of a quilt in it, in case you didn’t immediately recognize it… Edema is kind of a tip off that my heart is struggling and that’s new. The weight loss is also related to my heart/lungs because if oxygen isn’t getting down to my cells like it should, they can’t use energy efficiently, and then, you know, weight loss occurs. The tendon issue is scleroderma actively attacking them and gradually hardening them to bone. Bad scleroderma, bad!!
So, what did I say in my testy response? Reality bites. Some of us have progressed to the point where we have to admit that no amount of positive thinking will allow us to attend that family function that we were invited to, or to visit the annual Wool Market in the mountains, or to even walk to the mailbox. To suggest that we could do things if we just had a more positive attitude is hurtful and not supportive. No matter how much you want to believe otherwise, scleroderma does define me and everyone else who is dealing with it. Courage requires us to face down the monster and to accept the reality of our disease. How we choose to function within that framework is up to us.
I may no longer be as mobile as I once was, and the life that I used to have is now mostly gone, but I choose to continue to bloom in place.
Like a rose.
Updates/Notes from the ScleroFront:
- Do you like to wear linen? Those fibers are from the water tubes (xylem) in the flax plant, and made of sclerenchyma.
- The bunny-murdering neighbor put her house up for sale!!
- My Alpine Bloom sweater is coming right along!
Yarn, Books & Roses 
I’m happy that you’re feeling feisty enough to be testy. That puerile Pollyanna had it coming, and I’m glad you gave it to her. Besides, who made her the boss of all of you in your group? Who gave her permission to take you to task for being honest, being real? Three cheers for you!
“puerile Pollyanna” is now my new favorite description for these people who irritate me with their head in the sand stance. I mean, if you are on the Titanic, it does no good to pretend that you didn’t hit an iceberg… I am hoping that the administrator doesn’t come after me in the group because we are suppossed to always be… you know… positive.
I love your comment about the Titanic. I wonder what the pp would say if you asked her if she thought the captain of the Titanic was able to be positive after it hit the iceberg.
Or if you could still dine that night in the First Class dining room if you had a positive attitude… The thing is, you have to understand and accept that your ship has hit an iceberg and is sinking to face down the monster and take action. So many other patients are afraid to take drugs because of the side effects. Um… the ship is sinking. Take your drugs, hunt for a lifeboat, organize your stuff, and live like there is no tomorrow. I try to be kind because I know that many other patients are hoping that they won’t get too sick and why should I rain on their parade, but don’t disparage me for dealing with reality.
My heart breaks for each person who thinks that they can cure themselves by eating right and using essential oils.
You are one of the Most Positive people I know and you’re one of my heroes! I always find encouragement from reading your Blogs. Love the new sweater! Happy for the bunnies!
Thank you, that means a lot to me. Yesterday was a bad day, but today I’m up and fighting back again…
Last first, Marilyn: that pink/grey combo is superb !! Quite magical (like your knitting) !!
Back to the core matter ..
Bea’s comments are spot-on – do Americans say that ? I agree with every syllabub. 😀
And anyway, you’re allowed to be testier than any of the rest of us: having to spend every day of your life being reminded of that bloody condition – sorry, those bloody conditions – is trying enough for any saint, let alone you, eh ? [grin]
I keep wondering if all your fellow-sufferers are able to take on anything like your knowledge of what happens to your body. I mean, you’re a degree-ed person and a teacher, and your brain operates at a level superior to most ordinaries .. I hope they can absorb at least something about what goes on .. and I know you do your best to help when it’s asked for.
Just do what you feel like doing whenever you’re riled, me old china plate: spit at ’em if you want to or ignore totally. Up to you.
XO
Both of those colors kind of have shades in them, so I think that the sweater will be interesting as I get farther along in the colorwork.
We do say spot on! I wonder where that saying comes from,,, another thing to google.
I do have to be careful to not get a little snappish when people complain about the little things that they are dealing with. Boohoo, you broke a tooth? Boohoo, you sprained your wrist? Boohoo, you need a joint replaced? Okay, the joint is more major, but you get the drift. YOU CAN RECOVER!! There, moving on. I do try to inject some common sense and calm into discussions in the online support group forums. There is a lot of fear about drug side effects. I tell people to weigh the risks of complications against the side effects, and then I remind them that it is really easy to stop a drug. Just don’t do it any more! The other one is about taking collagen supplements… since there is a lot of collagen deposition going on as scarring in our skin/organs, people are afraid to eat it. Old bio teacher me has posted that nope, not a problem, as what you eat gets ripped apart into little amino acids, and the scarring is directly from signals the disease is creating. It’s like hoping to build big muscles by eating steak; it doesn’t work that way. Now I see people posting the same steak explanation to other people and I think… my work here is done. 🙂
And that is gratifying ! 🙂
DAMMIT !!!! – I overlooked the truly delightful fact that the bunny-murderer’s house is on the market ! I am awful silly now that I’m an octogenarian !!! [grin]
That’s the best noos since .. since .. well, it’s really terrific noos !!
I agree with what MR said. I forgot to comment that hearing that the bunny killer’s house is up for sale made my day! It’s like the quiet conclusion to a Wallace and Gromit movie written by Stephen King.
Whoever you are, Bea, you have a wonderful way with mental images !! 😀
I bet you love her command of language, too! You editors are quick to recognize written awesomeness. 🙂
Ah surely do !!! [grin]
Thank you for the kind words.
Not kind – just factual ! 🙂
Are you perchance from Colorado too? – if so, it must be a wonderful State.
No, I’m not from Colorado, but yes, it is a wonderful state.
It is a wonderful state. I came here from California, which is also a wonderful state!!
So glad that it will soon be over. This is the same lady who had a pit bull that terrorized me for years.
I was so happy to see it!
If I believed in god, I’d say it was an answer to all your followers’ prayers, as well as yours.
But since I don’t, I reckon it’s simply Good Karma. 🙂
Sometimes the universe just sends us what we need.
I have a marvellous short video about that -it’s more about when the universe doesn’t, but still awfully funny. 😀
What links the wrinkles and weight comments is the lack of empathy stemming from their own feelings about such issues without understanding that yours could be different. Annoying all the same
Oh, no, it is much worse than that. It’s the pressure put on women to always look young and to be thin. From that perspective, it was a positive to lose weight (without trying) and to not have wrinkles, and they were happy for me. Without any other frame of reference, they didn’t get that the life-threatening illness isn’t worth it.
Whilst I agree with you, I still think my thought also applies
Many people aren’t very compassionate or understanding about chronic illnesses, no matter the kind of chronic illness. They don’t understand what comments mean to us in our circumstances and how they can hurt. They don’t live in the world you and I live in. I am glad you have some spunk in you! I end up on Reddit threads more, never on FB, to me there have been kinder people on some of the Reddit threads and we help each other out. But I have encountered some weird ones (other than my family lol)
There was one person who responded to someone with MS on a chronic illness thread, she said at least they’re making progress and advancing in research (that lady obviously did not have MS). The lady with MS was dealing with a lot, and I responded how does that comment help? When we’re in the day to day “suffering”, how does that help to hear that? Sure it’s really wonderful but we still have to deal with the crap. The woman with MS and I were able to understand each others feelings even though we have different diseases.
I mean shut up already people lollllll…..
They just don’t have a frame of reference to understand, and in their hearts, they believe that if we just ate better, got more exercise, or took supplements we would get well. It is really insidious, as the unspoken message is that we are somehow responsible for what has happened to us. It’s a coping mechanism as they don’t want to admit that something like this could happen to them too, no matter how healthy their lifestyle is.
The Facebooks support groups are in closed groups that are monitored by administrators. They are mostly really good, but every now and then something hurtful happens.
I also have heard that “there are drugs on the way” message, but I also believe that we need to be supportive of where people are right now. The other thing that makes me steam a little is the pressure to raise money for research into our diseases. Hello. Need a little support here… I’m too sick to go on that walk you are pressuring me about, and my family certainly isn’t interested, and I spend too much as it is for my health care, but sure, pressure me to attend/contribute this fundraiser…
Ughhh ! All of your points – correct. And society in general is about just pushing thru….yeah sure been there done that doesn’t work!
I have to say my family has been some of the worst, the comments! I never thought this would happen to me- and then that I would have to spend time educating people? A lot would just stop but I’m so incredibly stubborn.
Hang in there. I’ve pretty much given up myself; it is too hurtful and I don’t see that they will ever change.
Those roses and that pink yarn seem mighty similar. Bright, cheery, definitely in the pink.
Bio teacher, eh? So you know whereof you speak. People are nuts not to take every advantage of modern medical science when unexpected icebergs appear, if not before. My dad was a doctor and I was a medical journal editor, and I revere modern medicine.
And now I know why some roses hang their heads and others stand tall.
(I’m so glad your neighbor is moving! Good riddance!)
Before I was a bio teacher I worked in a biomedical research lab, and the new cellular based drugs that are being developed are just amazing. I have argued with my sister about getting a biologic medication for her arthritis, but nope, she is afraid of it. Crazy. Why would you turn down a targeted cruise missile when the alternative is carpet bombing? Sadly, carpet bombing is all that can be offered for scleroderma patients right now. When I heard the Covid vaccine was mRNA technology I was like… slick! When can I get that shot!!! So many patients are afraid of medicines because of side effects, but that is crazy in my opinion. If you’ve hit the iceberg, take action and grab every flotation device available to you!!
Absolutely! My breast cancer in 2015 was treated successfully with drugs that didn’t exist ten years before, and a bunch of new ones have been introduced since then. Fantastic!
Hugs to you. Modern medical science is really making a difference.
Hopefully the bunny killing neighbor will move somewhere that there is no wildlife to murder. But at least she’ll leave your bunnies alone!
The roses look lovely, as does the sweater. And I think your post was a lot more realistic than “keep a positive attitude” will ever be. Yes, we need to stay as positive as possible in order to find the motivation to get out of bed sometimes, but that doesn’t mean it’s going to cure everything.
Hopefully to some nice apartment where she can’t hurt the wildlife.
Positive attitude is really a tricky thing. I kind of view it as doing everything that you can for yourself, accepting what you can’t, and moving forward the best you can without worrying. I have to mentally kick myself into action to face down my fears, but that’s part of the process. “Positive attitude” is not about refusing to accept the reality of your situation, but to do everything that you can within it.
That’s a good point. Positive attitude does not equal blind cheerfulness.
Continue blooming, Marilyn🌹 🌻 🙂
You have the right to your own feelings and reactions to your situation, and no one should be trying to shame you out of that. And you are a magnificent rose!
Thank you. I think I was really reacting to this person kind of attacking another for not being able to get out of the house anymore because her oxygen needs are so severe. More than anything, people in situations like that want others to acknowledge that it is happening, instead of some sort of gaslighting.
So true!
I was just about to write about the horrors of people who write comments on things and then realised I was writing a comment about something hahaha. I have found I’ve had to stop reading comments on Facebook or Instagram posts…people are far too willing to give their opinion without having the full picture or understanding of the circumstances. I’ve actually removed Instagram from my ipad and phone so would have to reinstall it to read things now. By the way, I love the flower jumper.
I have very little activity on Facebook proper because it is mostly a snake pit. I am active in several of the closed Facebook groups that are support groups for various medical misadventures, and of course some knitting groups linked to MKALs. In those cases the interactions are through the comments linked to a question posted by one of the members.
Little brother diagnosed with scleraderma June 2005. He passed away March 2006. Insidious hideous.
I’m so sorry to hear of your loss. This is an awful disease, and how horrible that it progressed so quickly in your little brother. Hugs!
Thank you so much! I miss him terribly.
You were far less testy than I would have been in that situation! I aspire to be as gracious as you.
When medical people comment on weight loss, I say “oh it’s easy, I just have toast for breakfast and then don’t eat anything else the rest of the day’. Obviously not true but watching their face drop is priceless.
I just went in for more testing and have to admit, I’m getting less patient with insensitive health care workers.