Feb 10, 2019

Just crap

That's about all that's happening.  After the sinus inflammation and headaches, something started happening and two doctors did not have an answer.  So after doing my own research and then questioning my doctor, yes indeed I diagnosed myself.  And there isn't a damn thing that can be done about it.  I developed Sjogren's syndrome.  My lips became so chapped and shriveled I could barely open my mouth.  Then they started sticking to my teeth, my tongue is so dry it is cracking which is painful, my eyes are so dry I cannot see clearly.  Now the joints, specifically knees, require a wrap or brace.  Does it get better?  She said not really.  Does it ever go away?  She said not really.  I don't have the other diseases that usually accompany this but she said the severe inflammation triggered the autoimmune response.  I'm using dry mouth treatments and loading my lips with grease, eye drops can only be taken a few times a day, and I'm hoping I will be in the very low percentage of people that recover.  Since it's only been about a month but no change, she said to expect more symptoms.  Not being able to see clearly even with magnifiers is extremely frustrating.  And other people have to deal with so so much more than this, I will shut my pie hole.  But then my lips will stick to my teeth.

I was working up the little ornament/knob hanger/tuck chart but I can't see well enough to stitch it.  So if I complete it and post it, I would appreciate seeing your finish if you decide to stitch it.  I think the giveaway will be the knob hanger or large journal.  I purchased large eco friendly notebooks with perforated lined pages a long while ago, decided to finally label them.  But I deleted all the labels from box making so only have one design left.  The three sizes are 6.5 x 9.5 spiral, 6 x 8.5 and 5 x 7 paper mache.  I had 30 of the smaller ones and took them back to Pat Catan's for their kid's craft classes as a donation since a return wasn't possible.  They never used them, but someone did.  They were $3 a piece!
The only way to not have the cover warp from the glued label, one must also be glued on the inside of the cover to keep it flat.
And look what I found while purging.  Where did I get this $2.25 punch needle kit?
I am having a procedure AGAIN on the varicose veins Monday morning called Varithena, easier than the EVLA.  40 compression stocking for 2 weeks and then the other leg, another 2 weeks.  Treadmill walking several times a day to prevent a clot and I don't know how that's going to work with the knees.  As long as I'm moving, slow and steady should be good enough. 
On top of my crabassiness, our local headline was about a 3 year old little girl that was continually beaten by her EIGHTEEN year old father.  His girlfriend witnessed the blows to the head and broken bones but never reported it.  WHY IS SHE NOT CHARGED ALSO?  Always someone that gets away with allowing the abuse.
Hope your weekend is going well folks. 


Sandra said...

What you have sounds dreadful, I do hope you make a recovery. Just had a quick Google and it suggests Methotrexate which suppresses the immune system, but I'm sure your GP will know that.

Take care,


Anonymous said...

Marly - holding you in thought and prayer.

blueladie said...

I am so sorry to hear this. Sending prayers, Cathryn ♥♥♥

C M Designs said...

I'm so very sorry that you're having so many troubles. I've been using Vicks on my dry lips and nose and other sore places. It has helped to heal the situation on me.
Sorry about the vein situation too. Please take care of yourself.
Child abusers and animal abusers should be punished to the endth degree.
Thoughts and prayers that you'll feel much better very soon.
Charlotte in Va.

Ann at Beadlework. said...

My cousin's wife has the same condition - she developed it after intense treatment for cancer. Over the years it's improved quite a bit and when we meet her she always has a small bottle of water in her hand so that must help to a degree.

Sherry said...

I have Sjogrens. I developed it when I was a little girl. There are many many symptoms. Dryness is a biggie. I use Biotene mouth rinse and that helps a lot. I use chapstick all day! Sjogrens can also cause psoriasis and Vasculitis. I hope you don't get these too. Just keep water, lotion, chapstick and Biotene around to use! Take care!

Margaret said...

You probably aren't a tennis fan. But Venus Williams has Sjogrens. She has dealt with it and come back. I hope that gives you more hope.

Heritage Hall said...

Crabassiness is a sign of pluckiness...but you need a vacation from those symptoms
and am praying you get one. Hope solutions are found for the Sjogrens. More research
is needed to find why so many are coming down with immune disorders...Enuff! That
tragedy of an 18 year old Father versus a 3 year old child is inconceivable, but all
too prevalent these days.. You are correct about the Mother, but she may also be an intimidated victim of his rage...Let us hope that the little one is given safe shelter and love. Hope you are feeling more comfortable soon, dear heart.

debbie haggard said...

Marly, sending you virtual hugs and many wishes for strength and grace as you battle these issues.

diamondc said...

Marly: I have never heard of this problem, I hope you are one of the people that recover, I shall pray for you.
I am so sick and tired of the laws that protect the guilty, she should have that poor child taken away and she should be sterilized so she can never have children again also she should be put on a no adoption list, I would love to see her in a very dark ally for just a few fleeting minutes, she would regret what she has done, yes this is a horrible threat but what the hell is the matter with the judicial system?? they are way too liberal in my eyes.
So sorry I got so mad, but hey I am who I am.


Mugwump Woolies said...

Marly...I recovered from Sjogren's after changing my diet. I have several auto-immune issues and SS was one that came and went, fortunately. I went through lots of eye drops and Biotene and lemon drops. One day I noticed my eyes were tearing in the morning and I could muster a bit of saliva. I still struggle with Hashimoto's (low thyroid) and adrenal fatigue. Eliminating inflammation causing foods from my diet has helped...no sugar, caffeine, gluten and processed food. I don't eat red meat, but do eat salmon every week. Do your research. Past generations did not have all these issues, especially thyroid...it all stems from our diets and stress levels. Hope you will soon be on the road to recovery. Be prepared...auto immune issues come in multiples.
Take care,

Marilee said...

Hi Marly
You might google "alternative treatments for Sjogrens syndrome. There are some suggestions and one thing I noticed on most of the sites was to avoid refined sugar and glutin. I've been diagnosed with both dry eyes and dry mouth, but mine doesn't seem to be officially Sjogrens. My opthalmologist told me to use Refresh Optive eyedrops up to four times a day and that really helps my vision. And my dentist said to use Biotin mouthwash. I also always keep a couple of Halls cough drops handy, although I try not to use them too often because of the sugar. They do come in a sugar-free form but I avoid artificial sweeteners because I think they are bad for us.
I can't find the article now, but I seem to recall that Sjogrens might be one of the problems caused by a leaky gut, which would go along with the avoiding of sugar and glutin … and probably wheat.
I'm hoping you find a solution to your problem. Your vision is so necessary for your work.

TheCrankyCrow said...

Oh Girlfriend....I am so very sorry to read this...I thought something may be amiss in your world given your lack of posts....I was even going to message you if I didn’t hear from you soon. ;-) You must be so miserable...I have occasional dry mouth issues because of some of the medications I take, but I really can’t imagine a dry tongue. OUCH.... I don’t know what’s going on, but I agree with Heritage Hall....something is awry with all these autoimmune disorders.... Another reason for my MIA-ness was, in fact, an autoimmune issue. I have always had back issues and had been diagnosed with spinal arthritis...but when the “episodes” increased in frequency and severity (as in I could not walk and would be laying on the floor in tears) I was finally referred to a rheumatologist.... I have been diagnosed with spondyloarthritis/Ankylosing Spondylitis and now Psoriatic Arthritis. Mine are a bit “atypical” as I don’t have some of the symptoms that come with some of the diagnoses (e.g., I don’t have psoriasis)....but I certainly have the inflammation and that has led to a gazillion other issues. My skin started scaling, the iron levels in my blood went (and continue to be) sky high (which, in turn, has the unpleasant side-effects of throwing off my liver functions, changing the color and texture of my hair), eye issues developed (uveitis) and I do painful injections every 3 weeks (that cost $4300 each time). Sorry to go on so...but just wanted to warn you that almost every issue you have physically is likely tied to the autoimmune disease. It just sucks....but you already knew that.... Big Hugs ~ Robin

Anonymous said...

Marly, I am so very sorry to hear that you are experiencing such awful health problems. Please know that you are in my thoughts and prayers for a speedy and smooth recovery. Take care talented lady. SAH

Peddlecar Quilts said...

Bless your heart, I am so sorry for what you are going through. Just because someone else may be worse off doesn't mean you aren't suffering too, and we need to get it out sometimes. And when you love to cross stitch, not having your eyes working well takes a huge chunk out of your happiness. So I totally understand. I am recovering from a major foot surgery right now, and I can't believe how much I took that foot for granted. Hobbling along even with a knee scooter is very difficult, the weight of the leg is heavy, and if you are not careful, which I wasn't last week, you can fall, which I did, necessitating going back to the Orthopedic surgeon for more exrays, et. It set me back several days and I notice that my stamina is very low, and the pain very high. At least I know it's temporary--I have 11 weeks to go, so I can't imagine your frustration of not being given more hope. You might even consider finding someone who specialized in your problem. Drs that couldn't even diagnose what was going aren't wouldn't give me a lot of confidence in their ability to help. Just sayin. I wish you all the best, and I'm grateful that about all I can do right now is cross stitch!!! Hugs

capecodgirl565 said...

So sorry to hear of your suffering. Yes, people deal with a great deal of misery but that doesn't lessen our own. Sending prayers that this will resolve itself and that you can find some relief in the meantime. I know what you mean when you talk of that poor innocent child. Here in Illinois several years ago, we had a "boyfriend" let a car which held a woman's three small children, roll down a boat ramp into a lake and let them all drown. Of course, the woman was present but claimed they couldn't rescue them although the antenna of the car was sticking out of the water, so not very deep water. He was sentenced to a fairly long prison term, but she pretty much evaded meaningful punishment. How does this happen?? You want to just slap them senseless along with the dolts who let them off! Hope things improve for you soon my friend.

Carol said...

Gosh, Marly, I don't know what to say except, I'm truly sorry to read of your diagnosis. I have heard of this before and know it is often a lifelong condition that varies in symptoms and seriousness. I do believe that diet is being studied more and more often in autoimmune diseases so I hope some major new solutions are on the horizon. Thinking of you and hoping for the best... ♥

deb said...

Oh dear ... Marly, you just don't seem to get a break. I'm very sorry about the Sjogren's - had never heard of this but hope you can find some relief. I know it's nowhere near what you're going through, but my husband suffers from dry eyes and has found Systane Complete (one of about a dozen different eye lubricating things they make) gives him the most relief. Hoping the others are right and that you can lessen the severity through diet changes.

Barb said...

Wow! this is not the best news! I am sending you some prayers and positive thoughts. That is one thing I have never heard of!

Vickie said...

I am sorry to hear of your news Marly. I sure sounds like you got some excellent advice here from caring friends.

JustGail said...

Sorry about the heath news, Marly. At least you know what's up, and can make a battle plan. And it looks like some of your readers have experience with it, maybe some of their tips will help. I hope things settle down a bit with other family members so you can concentrate on yourself for a bit.

As far as the child beater's girlfriend, maybe they're still working on what (or if) to charge her with? Especially if she's a victim of his abuse as well?

Do you still have the punch needle set? I'd be interested, if you're willing to deal with mailing it, that is. If not, no big deal.

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