Merry Christmas to All and to ALL a... - Sticky Blood-Hugh...

Sticky Blood-Hughes Syndrome Support
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Merry Christmas to All and to ALL a GREAT Night

jetjetjet
jetjetjet

Merry Christmas to all my Fellow "Sludge Bloods thru out the world .

Hope you all have been behaving so Santa can stop at each and everyone of your houses .. HUGS to all and to ALL a GOOD Night . PS Don't forget to leave Milk and Cookies out for Casey and I , we get very hungry and Thirsty on our trips to your homes . Pulling that sleigh is very difficult for Casey being a Chihuahua-- BUT he had his Geritol and Iron pills before we left New Hampshire this evening . So keep an Eye To The Sky . We will be along .. But at our age's we are just a tad slower than in years past

Hugs

18 Replies
oldestnewest

Merry Christmas 2 u 2 xx

MaryF
MaryFAdministrator

Have a fab one yourself xx MaryF

And a merry Christmas and warm, safe and well fed travels to you and Casey!

Thank's and the same to you my friend Hugs from Casey and I

Happy Holidays!!! I woke up last night thinking, "Damn, I didn't eat the cookie that my 8 yr old left for Santa!" So, like any good parent trying to keep up the charade, I got out of bed, walked down the stairs, and dilligently ate the star shaped cookie left on a plate on the mantel. Hope all of you are spending time with your loved ones....

SO when Casey and I stopped the sleigh on the roof and went down the chimney of he house with the empty plate on the mantel ,this was your house --- we were talking about that on our way to the next house .How somebody got our cookie !!! BUT we figured somebody else needed it more than me -Casey was complaining about how my weight i gained this year !! sleigh was pulling harder G

Hi Jet,

I looked for you and Casey in the sky ( I live practically at the roof at 7th floor) but I had my last grandchild (6 weeks yesterday) in my arms as often that I could, so I probably missed you. Anyway it is a long sleigh-ride to Stockholm.

You told me the other day that you had cold and stormy wheather when driving up to the hospital. I wish you both a healty 2020!

A big HUG to you and Casey.

Wittycjt
Wittycjt
in reply to Lure2

7 weeks today- congrats Lure2

Lure2
Lure2
in reply to Wittycjt

How nice of you - appreciate it.

Thanks for all you kindness to us all here!

APsnotFab
APsnotFabAdministrator

Right back at you and Casey! Have safe travels......

I hope you had a wonderful holiday🎄

WELL ALL Casey and I are home sore paws - swollen feet - empty bag and all. Thank You all for tour Wishes .

I was doing laundry and had one of the worse flares i have had in quite awhile . Full body beet red and traveled very quickly down entire body .and lasted 3 to 4 hours till it finally went away . I stayed in laundry room where there was people that i knew just in case it went real wrong on me.Right eye swollen all around the eye itself and all the way up to eye brow .this has been coming on for about 5 r six days , WELL now it's here { hooray !! } It seems the left eye sty just went away HMMMM . This right eye doesn't seem to have a focal point or head like the left did ?? I wouldn't imagine they are connected ?? the flare and the eye unless some one can enlighten me on this. I do know the eye is driving CRAZY i keep wanting to wipe it and i know i shouldn't and i am starting hot compresses on it this morning ...That's the rant for today SO FAR Ha ha .

Are you correctly anticoagulated today after the long sleigh-ride do you think?

Since this happened so suddenly and dramatically and then passed after a few hours, consider it could have been angioedema. Extreme flushing, swelling, weakness, abdominal pain, etc. without actual hives is how it manifests. I had multiple episodes for 20+ years and it stopped with my diagnosis of APS and starting warfarin (INR 3-3.5) and hydroxychloroquine. Doctors always want to say it's caused by an allergy, but that may not be the case. APS and clotting can be a trigger.

Just a thought. Hope you're feeling better.

Acquired Angioedema Associated with Primary Antiphospholipid Syndrome ncbi.nlm.nih.gov/pubmed/298...

Wittycjt
Wittycjt
in reply to Mair

Interesting article. Best wishes Jet, Happy New Year!

Lure2
Lure2
in reply to Mair

Hi Mair,

I read what we spoke about 3 years ago. Are you still happy with your selftesting and do the nurses believe you now so you do not have to report on telephone every time with your INR-numbers ?

You and I are unique I think to be able to control our INR with testing and dosing ourselves. We are indeed lucky as this is the only way for APS-sufferers to be safe with Warfarin I think. I think you agree with me.

Mair
Mair
in reply to Lure2

You are so kind to ask. My doctor and I compromised on a plan that I will selftest as often as I feel necessary and not report to the clinic. In return I agreed to come to the lab every 6 weeks, or sooner if I am unable to manage my INR (I never have.) The anticoag nurse gives dose directions via the online chart and then I adjust frequently according to my selftest results, which keeps me in range nearly all the time.

This relieves the awkward position the doctor would be in if he had no documentation of INRs because of my selftesting, but continued to prescribe warfarin. And he's allowing lab less frequently than the standard "written in stone" 2-4 weeks. So it's a win-win for both. I feel fortunate to have found a doctor who will work with what's best for me.

Thanks to all for the well wishes for this holiday season --We Thank You All Again !! Hope you all had a great time with family and friends. Casey and I are still recuperating after our world wind travels - it was certainly nice seeing all your homes all decorated up so colorfully and nice . I couldn't find it in my heart to wake any of you so i just kept to my rounds .Casey did eat at some of your dogs food BUT not too much I couldn't have him bloated to much. Well tomorrow i leave home here at 5 AM to go to Dartmouth up in Lebanon NH . I will be seeing a Spine and Pain specialist There for evaluation an APRN . As far as i know i won't be doing any testing up there but just in case i will be leaving Casey here at home with my next door neighbor Judy - he is use to her and is OK staying with her . I can't take the chance that if they should want to do testing and it consists of X ray's i wouldn't be able to have him with me and with his eye sight going so bad he wouldn't stay still for anybody so the safe thing is to leave him home. I was told that any testing would be done down in Manchester - much closer to home and that is where the Doc i will be seeing will be .They wanted info on my Kissing Osteophyte's that i was getting MBB injections for { before they stopped all my treatments till this issue is resolved !! } So off to bed early - up at 4 AM and hope to be on the road to Lebanon by 5. That will put me there{if traffic is light } about 6:30 AM. - i can check in at that time with the nurses .This hospital is massive it is almost a mile long !! so if i get there early enough i can park close to building 4 to 5 minute walk instead of 10 minute walk or the bus . It is suppose to be cold tomorrow -we just had a snow storm BUT roads by now should be fine - just keep an eye out for BLACK ICE it is very hard to see at night I will let you know what becomes of it when i get back home late morning with any luck !! Hugs to all !! from Casey and I

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