Sticky Blood-Hughes Syndrome Support
8,090 members8,327 posts

Need advice on hurt back some blood pooling and tremendous pain!!!

Hello Friends & Countrymen & Countrywomen too!!! Lol... CONGRATS TO UK ON GOLD MEDALS IN OLYMPICS! Congrats Kirsten for Sweden with Swimming Medals!!! Yay!!! Ok I'm FINALLY ok with INR 3.67 YAY! I had to convince my Hemotologist it was great and I felt better! He finally agreed after much coaxing! Unfortunately I had major work in house! Moved furniture, boxes, and the like! Next day cud hardly walk! Had huge Hemotoma on COXIS BONE AND HARD LUMPS! The problem with me is I DONT AND WONT ACCEPT THE FACT THAT IM AN AMPUTEE & only have one leg!!! I continue to fight against the odds and Be Superwoman!!! I tend to send mixed messages to people! Many friends still rely on me for everything cuz I'm NUTS! I must be able to RUN at all times because if I have to run after a child to save them I must be able to do that! Unfortunately I'll never change in my quest for helping the human race whether I'm one legged or not! This diesel tuk my leg, I refuse to let it take my life, but MY FRIEND, I'm always fighting and I'm tired of fighting!!! I'm a PEACEMAKER NOT A FIGHTER IN THAT SENSE!!! I send a msg to people that I'm fine don't need help because I must be DEBBIE! My sister bashed me cuz I NEVER ask for help and send message that I can do it all!!! I must stop!!! Help me friends and family! I'm in trouble Mentally and physically and need someone to come with me to fight for proper leg! Just barley a month ago I got new parts to my leg!!! Lol... Wow does that sound funny!!! Well I'm ( My Leg) is shrinking again and need new leg damn it! I'm going tomorrow for the fight of my life! My Prosthetic people are fantastic, the owner had full leg cancer at 24 and he leg removed! He's gone to Washington DC AND HAS SINGLEHANDEDLY had the law changed for the one leg per life rule! The ins companies still try to fight us, but only for a couple of weeks because I called them and threatened to sue them if I fall because they said no! The next day I was approved!!! Lol... See in always fighting! This redhead's got not only sticky sludgy blood, she's got fire in her blood too and don't cross me!!! Lol... I'm nuts!!! These people for a year and a half have promised me the world and they can't get my leg right! I'm difficult a they all tell me! Well I've AKED for a price of a STATE OF THE ART LEG, & They won't give it to me because they love me and say they cud never let me pay! I want to pay, I'll call Paul McCartney and ask him since his X-Wife had a leg for each outfit and cud still wear heels! SORRY I got off of real reason for this post! Just venting!!! Need u people for that! Thx for listening!!! Mi dilemma is I went to Hemotologist with my COXIS bone & Hemotoma! He said to put heat on it and stop my Warfarin for that night! Then I had already had an appointment with my "Shut Up,"Primary Doc and he said N HEATING &!to b honest, in past with all my clots, they always told me no heat! Then he really surprised me by saying he wants me on antibiotics because it's on bone and he's afraid with my condition, I cud get infection! This is my question, Have any of u ever heard of this? I know DAR has been thru hell with blood pooling and such( not trivializing it) & wonder if anyone HS been told to do this??? I AM NOT A PILL TAKER!!! They sent 3 doctors to convince me in the hospital that it's ok to take pain killers wen in pain! I was so hell bent on NOT taking oxycodone because don't want any addictions! In the nursing field I'm in, I've taken care of way too many addicts, whom are normal good people that doctors have made them addicts! Withdrawal is horrible! They convinced me that because I'm so aware of what cud happen that I'll never become an addict!!! I and Nanny 23 ( My Dear Sister)have supper high tolerance to pain, which I've been told by my docs that it's not good cuz we wait too long b4 going to hospital! I'm usually near death by time I get there, but that's cuz my docs think I'm nuts and tell me stay home till after the weekend cuz they can't be bothered to take control because they must go sailing that weekend! Why shud they interrupt their fun!!! Lol... I just got my antibiotics and Hemo told me don't b surprised if the Hemotoma gets bigger! Which it has! MRI on knee is sending me to Knee surgeon next week! I promised to update u in MRI! I read it and was able to interpret it myself! TG I have medical experience! My ortho refused to get on phone to tell me, he just did to send me report!!! Lol... He needed my $50 for his New Life Preserver to go sailing!!! Lol... Well my MRI says The Gangleon cyst on my Patella bone is filling my knee with fluid and attaching to the nerves and causing PAIN! Plus have Medial Miniscus tear, plus Have bone exposure on my Posterier Horn Lol... Hey I know I'm Taurus The Bull, but come on I have horns??? I guess if u mess with the Bull you get the Horns!! Lol... Ok so shud I take those antibiotics??? Hey Nanny 23 research time! My sister is medically BRILLIANT!!! A little Blonde ( no offense just like to tease her) at times, but AMAZINGLY, Thoroughly, BRILLIANT AT RESEARCH AND UNDERSTANDING EVERYTHING AND PUTTING IT IN LAYMENS TERMS! She not even in medical field, but her son's a doctor!!! Lol... Sorry fo long text, just need advice! Oh I also next week found a Rheumotologist that knows about APS! We shall c if he passes " The Debbie Test!" Hope and Pray Y'all are well and healthy and HAPPY TOO!!! Godspeed!!! Live to All!!!

2 Replies

You are a fantastic woman! I love to read what you wright. I can see on your good writing that you have an INR high enough. Bravo, convinceing your Hematologist to have a higher INR! About the other thing (advice) sorry, I know nothing.

Wish you Health! Godspeed !!



Awe thank you Kerstin! I love to write! Use to write short stories and comical stuff! I love to make people laugh at my own expense! Love to make fun of myself!!! Love ur brilliant writings too! Enjoy the Olympics! Are you watching the Olympics? Amazing swimmers! And Denmark came in 2nd place with bucks Marathon! There was an accident with the first 3 contenders & Denmark came in 2nd and was glad Belgium came in first place! In light of the terrorist attacks there they needed a Good Thing for the Country to celebrate!!! I was happy Denmark came in 2nd and the two worked together in the win!!! Neither country was suppose to win! So you see, u never know what's in front of you!!! Godspeed!!!


You may also like...