Tag Archive | clotting factors

Pillow Talk….If Only


Pillow Talk

This week was my 6 month anniversary since my pulmonary embolism. Yet, I didn’t even realize it until Thursday night….and THEN the party began!!! I saw some old friends I hadn’t seen in quite some time. With being one who talks and socializes a lot, I have only a very few close friends and family that REALLY know me or that I even let in emotionally. That being said, it was still a bit bewildering to me that no one had commented about it. It hadn’t even been remembered, not even my me  until two days after. Surprisingly, it was my Mom that reminded me of it. With my legs propped up as high possible, it was the pillow they were on that was the trigger.  It had been hers. It was with her through nearly all the times she suffered through her blood clots. This pillow is nearly as old as I am and it was one of the first things I acquired after she passed. It was only fitting that I should give it a home with me where it would be used in the fashion it was accustomed to. Now, if only this pillow could talk……..
 
That’s when it happened….the first guest to show up to my party was Mr. Self Pity himself….strutted on in like he owned the place!! ‘Well HELLO BABE….Missed me?’ Every bit of strength I had at that point eroded. I wept…just like the girl I am, I wept!! Thoughts of the last six months flooded my brain. Then the memories of previous experiences when the recovery was so much quicker, easier, and kinder. The set back from the week before with legs swollen the size of tree trunks and them only being about half that size now hadn’t helped matters any either. Mentally, I can leap off tall buildings, fly to the moon and back, but physically, I can barely walk across the room some days, my legs don’t hurt although carrying around the extra weight does tire me out quickly, and I can’t do everything I usually do during the summer. I’m just HERE!! And WHY?!?!?
 
The Agony of “De-Feet”
 
Next to show up was Self Loathing….oh, he’s a sly one…Looking down at my legs, I hated them for failing me. I hate how they look. I hate that I can’t motor them some days and others they are stinging, flaming, itching attachments that I are EXASPERATING!! Just when I think I’ve made it back to ‘normal’, my body reacts and just laughs like I’ve lost my mind..and when it happens, I nearly do. 
 
Then came ANGER!!! I’m angry that I’m not back to the ME I was before all this happened. I’m angry that I have to rely on others at times to do simple things that I should be able to do for myself. I’m angry at having to learn how to deal and cope with yet another facet of this STUPID disease. I’m angry that it’s taken from me. I’M ANGRY!!!!! I’m allowed to be and I have a right to be, but I also know that it’s ok, but to brush myself off and I’ll get back up only to gimp down this path of recovery until I reach the finish line.
 
This weekend though has brought me another perspective on this experience. I have SUPPORT!! Although it may not come in the packages you thought it would, it DOES eventually show up and I’m grateful for it. In the last two months alone, I have had the privilege of meeting some of the most amazing, wonderful, and MIRACULOUS women that it is MY honor to know. Some are bloggers, some are healthcare workers, some are students, but we are ALL survivors!!! If it hadn’t been for long texts, chats, comments, and photos that took place some very long nights, I don’t know that I would have been as open and sharing as I am now. Actually, that’s not true, I KNOW I wouldn’t be. It’s because of them that I took a thought of becoming more open with sharing and support that it grew from a thought, to a blog, and within the last three weeks, both Facebook and Twitter have been graced with my presence. 
 
 
This path I’m on isn’t as easy or rebounding as it’s been previously, but it has brought me friends that understand, commiserate, and get angry with me because they know. It’s brought caregivers a glimpse into our world of being caregivers to them by saying “I’m Fine”, ‘It’s Ok”, and more so that THEY don’t give up parts of themselves for us. Only to be the recipients of our gross temperaments once we do have that frustrated breakdown where everything and everyone is the enemy. It’s also brought me education in the form of our commonality and our differences when it comes to our clotting disorders. We are a very UNIQUE and SPECIFIC group of blood odd-balls all looking for the same thing….a cure….
 
To my friends and my followers…you amaze me every day and bring me such joy with your comments…It’s not MY strength that gets me through,  it’s the strength that YOU give to me.
 
Willoweagle 
 
Shadows of Life
 
 
 

 

Reflections ~ A Mother’s POV: Part IV


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Tuesday, June 7, 2011 ~ As my car was growing wings racing to get to Andrew, a major revelation came swimming slowly toward the front of my brain begging to be noticed despite the chaos. Antithrombin…..3!!

“Barry. You’ve got to tell them something veRy important.” My voice was much calmer though i had no idea where the control was coming from.
“Now this is a long name so if I need to I’ll spell it out for you but it’s imperative that you tell the doctor that there’s a family blood disorder. It’s a clotting disorder. It’s life threatening. Its called Antithrombin 3. You hear me? Anti….thrombin…..3!!”
“Got it”
“You sure? ”
“Positive!”
“Hang tight. .. I’m coming! ”

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Living Your Best Life While Taking Blood Thinners


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Blood thinners??? FOR LIFE??? I was only 19, had just given birth to my son, was experiencing my first DVT (arterial no less), and was trying to come to terms with the fact that I was going to be just like my Mom! She had suffered with numerous DVTs (at least one year) from the time I was 5 years old. I was aware of what was in store for me. There wasn’t a medical diagnosis for whatever this blood disorder was, I knew what the treatment was….RAT POISON…COUMADIN!!! I had seen what that entailed. Doctors office visits for regular INRs, changes in doseages consistently, and the bleed outs and bruising. I didn’t want anything to do with it! Then 20÷ years later, I threw yet another DVT while therapeutic. New doctor, new technology, new medication…Lovenox. I took this for a year religiously while suffering consistent sidhe effects of nausea and hair loss. Then another new medication….Arixtra. what a wonderful change. No more side effects! Instead, again while within treatment guidelines, I threw the worst and most clots ever. A pulmonary embolism saddle clot along with bilateral lower extremity DVTs. Currently I am on Xeralto, another new medication on the market, and although its only been a month, it seems to be doing its job…I hope. Here is a very good article from one of my favorite resource sites regarding living with blood thinners. What blood thinners are you on? Are you suffering from side effects? Do you get frustrated

http://www.stoptheclot.org/News/article346.htm#.USMG4JG3PJs

♥ Words To Run By ~ Meet Sara ♥


♥Meet Sara♥

Another survivor shares her story of inspiration, strength, and overcoming the challenges of living with a blood disorder.

How does she heep her wits about her? She RUNS!

I want to introduce you to Sara. A wife, a Marathon runner….A SURVIVOR!!

Sara’s Story ⇨ Survivors Share

I’m a runner, writer, dog-mom, and self-proclaimed hot sauce connoisseur.

I’m also a survivor raising awareness daily about the devestating effects of blood clots.

Words To Run By

My story is not that different than anyone else. I graduated from college, started my first real job as a child welfare caseworker – a field completely unrelated to my degree, of course. I got married on 07/07/07 and we adopted two dogs – Grace and Sadie. Back then, I would have told you I lived a great life, until I discovered – and not without a whole lot of things going really wrong first – that there is more to life and more to me. I wanted more, I needed more, but I had no idea where or with what to start.  Continue reading

The Clot Must Be Fought – Our Stories


The Clot Must Be Fought

So many lives….so many stories… Other survivors share:

Our Stories @ The Clot Must Be Fought

Affairs Of The Heart


Blood Is Thicker Than....

Blood Is Thicker Than….

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As we celebrate love’s ‘holiday’ tomorrow, remember that it’s all an affair of the heart and blood is thicker than water….

and for some, our own lifesourcefights our very existence it supports.

We are strong!We are SURVIVORS!!! ♥

 

Go Red For Women ♥ American Heart Association

Power To End Stroke

Stop The Clot

 

I’m A Survivor!!!!


My current battle with my genetic clotting disorder..I survived!!!

Christmas Day 2012:

Just barely three weeks ago…I cheated death by surviving the coroner’s ‘bread and butter’. I threw a saddle clot which stopped my heart for an unknown amount of time…but merely seconds on a clock. This disease/disorder/deficiency will eventually kill me unless human accident gets me first. I’m trying to find others to gather with me in searching for more answers to many unknown questions and alternative preventative treatments. If not a cure in my lifetime, than a cure for my son and his unborn children….Please help me in the fight against this silent killer

Post PE precautions where in order ESPECIALLY when the Orkin man showed up for his monthly visits at my work facility…

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This is my original story:

 I am 2nd generation ATIII Congenital having my first DVT/VTE at age 19 which wasn’t diagnosed immediately as I was pregnant at the time. It wasn’t until after the delivery of my son and only after the insistent urging of my mother, that the possibility of my having this at that age was grudgingly given in too and after a very painful venogram, was finally diagnosed and was not just venous, but arterial. Why was my mother so insistent about what it was? It was because she had lived with recurring DVT/VTE’s for over half her life with her first being diagnosed directly after having given birth to me. My mother was the first generation, having skipped a generation through my grandfather. My sister is also an active ATIII Congenital. As of two weeks ago, I thought the only worry or concern I would have would be that any future granddaughters of mine would someday become active through my son, as in the years that I have researched ATIII the most common and recurring thread is that, usually, men are carriers not actively diagnosed. That has all now changed as of June 6, 2011 when my 22 year-old son was rushed to the emergency room for the third time in just as many days. He, once again, had a CT scan done of his head which revealed something perplexing to the physicians. The doctors were stumped until I arrived at the hospital where he had been taken and told them about our family genetic disorder. The final diagnosis was cerebral sinus venous thrombosis and accompanying brain bleed concurrent with stroke and  seizures secondary to ATIII Congenital. He too has now been tested and diagnosed with ATIII Congenital.