Greetings! This morning a sweet friend sent me a link to a floss tube video that is absolutely wonderful. Thought I would pass it along for you to see her fabulous sampler collection, glimpses of her decorating and tons of redware. I enjoyed it!! In case you can't open the video from here, this is the link...
I can barely speak because my mouth is practically glued shut and no products are working. Food turns into a cotton ball when eating and I have to take water with each bite creating a horrible texture with no taste. My eyes are shut because they burn so bad, no products working there either. Doc said all they can do is recommend products to try to control the symptoms and they aren't working. Also told me that this severe of a case will not go into remission and I need to be monitored for lymphatic cancers and scleroderma. Seeing an eye specialist in two weeks (Restasis is not for this syndrome) and they called yesterday with two other products to try, every 15 minutes. I am so surprised that such an extreme situation arose so quickly in a healthy person.
I'll tell you what is bothering me even more next time. Or not.
We get our car insurance, house insurance, property taxes, and income taxes at the same time (and Carole's tooth extraction, and the bridge work she now wants). Our tax preparer stated that people are ticked off because they expected big returns. She had to show them the difference in what they paid in previously. The rates are lower and no one thought about the fact they are getting more in the paychecks. She said even showing them how much less their total liability was, they are still mad. Bottom line, the less taken out of your pay, the less your refund will be!
I'll tell you what is bothering me even more next time. Or not.
We get our car insurance, house insurance, property taxes, and income taxes at the same time (and Carole's tooth extraction, and the bridge work she now wants). Our tax preparer stated that people are ticked off because they expected big returns. She had to show them the difference in what they paid in previously. The rates are lower and no one thought about the fact they are getting more in the paychecks. She said even showing them how much less their total liability was, they are still mad. Bottom line, the less taken out of your pay, the less your refund will be!
Have a good day!
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18 comments:
Have you watched the Saltbox Stitcher? OH MY!!!! The Samplers!
Oh Marley, I am so sorry about your health issues. It has to be scary that this has moved so fast. Does it help at all to just suck on a hard candy, for the mouth dryness? I had a friend who had throat cancer and that is what worked for her. You have probably already tried that suggestion. Healing thoughts coming your way.
Oh, heavens yes to Valerie and her Stitching in the Barn and her interview with Kay Schaeff. I've probably watched/listened to it over 20 times already...when I'm stitching I just listen. LOL She has all sorts of Scarlet Letter and Essamplaire samplers hanging that I have either done or have kitted, so I enjoyed it immensely.
Robin
Sorry to hear you are having such problems. Have the doctors checked you for Sjogrens? Website: https://www.sjogrens.org/home/about-sjogrens/symptoms. Hope you fell better soon!
Thanks for sharing this wonderful link. I watched it on my big t.v. and it was like being in that gorgeous house! Don't give up on the Sjogrens. I think the biggest and most beneficial change you can make is to go gluten free. When my hair started falling out I really got serious about my diet. Hope you can get to feeling better...remission is possible, believe me. Doctors...they don't know everything. If they can't give you a pill or an operation they give up....especially on autoimmune diseases. Keep doing your research and watching your diet...food is medicine. Did I ever tell you how I fought with doctors when Annie was sick with what I knew was Graves Disease? They all told me kids with D.S. don't get Graves, they get Hashimoto's. I knew from her symptoms she had Graves. They tested her and retested her because...she had Graves!!! and they did not believe it after only one test. I was so angry. I swore never again will I rely on what a doctor says. Not the only time I've had to fight m.d.'s for my kid!!!
Robyn
Feeling so bad for you, can`t imagine how miserable you feel. Praying you find relief soon!
Marly, I am so sorry you are having such troubles!! I had never heard of that condition. You have my prayers!
Well rats....that sounds completely awful. I am on such a smorgasbord of meds that dry mouth is something I have come accustomed to living with...but mine is tolerable for the most part...can’t even imagine what you must be going through. I am so sorry. Thanks for the Flosstbe recommendation...Next tine I have an entire day to waste (because I KNOW one will lead to another and then to another....), I will be sure to check it out. Yeah...January, February and March pretty much suck, eh? :-(. Robin
Marly. I 'm so sorry to hear your condition has gotten worse . AS stated above Dr. are human and don't know it all . I hope you get relief soon. I just found this floss tuber and am looking forward to her going back to her friends home . Her barn is nice too
My prayers for relief.
Linda m
Marly, it sounds like sjögren!
Wish you all the best, hope you feel better very soon.
Thoughts and prayers for and of you, Marly. So very sorry you're going through ALL that you are going through. You surely don't deserve it.
Hoping that something will work to help you feel better. There has to be something that can relieve the pain and misery.
Looking forward to watching the video. Thanks for sharing.
Hugs and prayers,
Charlotte in Va.
Sorry to hear that you are going through so much misery. Hope things turn around and life gets back to "normal" for you. What ever normal is.
I'm sorry your eyes and mouth have gotten so bad, either one alone would be no picnic. And more things to watch out for?! I hope they don't crop up. You've got enough on your plate.
Regarding tax refunds - my Dad was never in favor of getting huge refunds and always pointed out that you're giving the government interest free loan. OTOH, it seems only way some have the ability to save up for a large purchase. Some will spend every dime (not always by choice!) in their paycheck, and others do manage to save but get hit by unexpected and unavoidable expenses.
Oh, I'm so sorry to read things are getting so bad, Marly. I can't imagine! I was battling a simple cold/flu this week and that was enough for me--can't imagine dealing with something so exhausting and chronic. If you need to come south to the "big city" and I can be at all helpful--please let me know! ♥
So sorry to hear all the problems you are having. Hopefully you can find something that works.
One of these days I will have to check out floss tube.
People just don't understand nor do they want to. It's the gimme, gimme, gimme attitude that will bring down this great Land of ours.
Do hope the specialist will find something that will solve your health problems very soon. So sorry for you to be so in a bad health condition.
You are in my prayers -get well soon!
A big hug
Greetings Truus from Holland
Sorry you're suffering so much from the Sjogrens. :( It sounds awful....
You are in my prayers, so sorry to hear all you are dealing with. I too have discovered the Stitching in the Barn, that particular episode. It is wonderful and such an inspiration, although probably not talented enough to live up to said inspiration! Anyway, know you are in my thoughts and prayers and hope things improve soon, if only even a little.
The sampler eye candy video was delightful - thanks for sharing it!
But your health news ... I'm very sorry this is giving you so much trouble and making you miserable. Hope you (or even those docs) figure out something that helps!
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