Trying to process it all.....
“Strength does not come from physical capacity. It comes from an indomitable will.”
Went to go see the doctor... Everyone told me that doctors know best, and that I should wait for the appointment to come next week. But being that I have spent the last 16 years of my life dealing with doctors, surgeries, appointments and generally the chase to figure out what the fuck is wrong with my body, I have since learned when doctors feel as though they have reached an end point. So I went and saw my endometriosis doctor. Yep, a tiny tiny tiny spot, one which he didnt even remove was found. So basically, I don't have endometriosis. Awesome. More scars for something which I have no answer for. He showed me the pics tat he took while under the knife. My bladder shows all inflammed blood vessels. I even could see how many blood vessels where present. Than he showed me something which I am not sure how to deal with, and the only cure for it is a hysterectomy It's a distant cousin to endo and its called Adenomyosis, http://www.mayoclinic.com/health/Adenomyosis/DS00636. Yea pretty much my uterus looks like a giant red hot mess with giant lumps on it. Awesome. I am 31 years old, and now somehow I have reached the point that I may lose the chance of every having kids. Do I try? Do I try and struggle through the pain? WTF DO I DO?!?!?!? Oh, I forgot the second part. I could have a blood disorder where my blood doesn't clot, and than I get the joy of traveling 3 hours to a specialist to try and treat the disease. Awesome.
No one understands. No one understands the incredible amount of strength and courage that it takes to sit there for the umpteenth time being told well you dont have this.... or you might have this... blah... My sister was kind enough to come with me, she took notes. She asked why I didnt, i said at some point, you brain just starts processing things in a different way than someone being told for the first time that they are not healthy. Its a weird mind set. I have amazing supportive people in my life, and right now I just need to process this all. Sometimes I think it isn't fair, than I remember when I was 15 being told I has an inoperative tumor in my sinus cavity in my brain, and there was nothing they could do about it.... Some point, you start looking at life in a different way. Some point the possibility of death no longer scares you. The possiblity of living your life in pain is no longer a possibility, it is your life.
Some point you begin to shut down to people's problems in life and their trivial bullshit tat they deal with. Ooooooooo you have a headache... fucking deal with it. Oooooooooo you had to spend $20 for an office co-pay. STFU I just spent $15,000+ for surgery that ruled out something, and didnt cure anytime. oooooooo you hate your job. Fucking suck it up. Oooooooooo you dont wanna exercise today because you are tried. STFU. People take their health for granted every fucking single day of their life. Fact of the matter is you don't understand what living in chronic pain is till you live it.... I'll get over it, and this too I will battle through and make the best of it. I always do. The amount of will I have to never give up is amazing... Sometimes I don't even know where it comes from....
Labels: adenomyosis, diganose, endometriosis
posted by Warrior Girl @ 2:24 PM
2 Comments
2 Comments:
Katie,
Thanks for your comment on my blog tonight. I left a detailed reply to your blog comment there and some of that overlaps with this post but I wanted to take a moment to touch on some of the topics you've raised in this post.
As I indicated on the blog comment reply back to you on my blog, I don't understand why the endometriosis that was just found wasn't removed, regardless of how small it was.
As far as "not having endometriosis", it is a chronic illness and there is currently no cure available. So, anyone who has been diagnosed with it has endometriosis. Some patients are fortunate to obtain a "remission" and others are not.
You indicated that your "bladder shows all inflamed blood vessels". Was a cystoscopy with hydro-distension performed while you were under anesthesia to have the laparoscopy? How were these blood vessels visualized? Were they inside of the bladder? I'm confused about this part.
I looked at the Mayo Clinic link you posted re: adenomyosis. It is not the same Mayo Clinic link I posted in the blog comment reply to you. Please note that one difference between the 2 links is Mayo's explanation of how adenomyosis is definitively diagnosed.
If you are unclear about adenomyosis, I would ask your doctor questions about this subject. I'm also a big believer in second opinions. So, if you're not getting the answers/relief you need with one doctor, there are plenty more out there.
There is more information on the last part on my blog comment back to you.
As far as the blood clotting disorder, I would ask lots of questions when you see that specialist. I'm sorry you have to drive so far for it but it's good that you're already connected with a doctor who specializes in it.
Bravo (!) for taking your sister along to take notes. Very smart! I am a big proponent of taking someone along to take notes.
It is AWESOME that you have amazing, supportive people in your life. That is HUGE.
I have had various "scares" in my past (including having cancer removed in 1996 which was found by accident during my laparotomy). I think it does change how people look at life when such things happen (generally speaking).
It can be difficult to hear people complain about issues that pale in comparison to what chronic pain patients deal with daily.
It sounds like you have a well of inner strength that you are pulling from. This is a good thing.
Congratulations on quitting smoking! That's excellent. Congratulations too on taking the initiative to find books on cooking to help you eat well-balanced meals.
Try to take it easy on yourself in the aspect that it is generally not an overnight process to determine how NOT to let a chronic illness like endo become one's identity. It IS possible to make peace with the fact that endo is a part of a person but does NOT have to become that person's whole identity.
Most patients have some sort of "pity party" moments but it's important to be able to then move on and it sounds like you are already doing that.
Try to resist the temptation to take on too much because, sadly, this can result in becoming sicker. So, I always suggest to people that pacing oneself is very important.
Best of luck to you! ;)
Jeanne
I will start from the bottom up.. I JUST saw your response, which I thank you for dearly!
I couldn't agree more on taking on to much part.. I recently have been doing some evaluations in my life, and trying to weed out the bullshit from it... I think that it's important to take a step back and re-evaluate the situation when need be, and I think after years & years after much struggle with modern medicine, it's time to heal my soul...
I currently have an appointment with an Energy Medicine doctor (because i FIRMLY believe that my energy is out of wack), acupuncture and I am going to go back to my therpaist that helped me with panic attacks years ago. It's time to work on my soul. Also important, is education. I currently am reading "Close to the Bone" (AMAZING book I recommend all chronically ill people)and going to start on "One breathe at a time. Buddhism and the 12 steps"...
As far as the endo goes, I honestly couldnt tell you if he removed the spot or not.. It was very tiny, and very microscoptic, and to this day I am not sure what happened.. All sort of a blur. Currently this doctor is under reveiew with the medical board for suspension of his license. 1) writing prescriptions for family memebers he was having an affair with and 2) here-say about the affair with the patient. Either way, if he wrote prescriptions without an exam, that he is guiltly of unethical behavior which only plays into the fact I feel like a food & I got played for my $$$$.
Yes a cystoscopy was done. I figured that if I was under, go ahead and do it. Doc said he has never seen so many inflammed vessels. Couldnt even take more than 2 pics before the camera filled up with blood. yes I have IC. Congrats. Knew this..... Now how to get the pain to go away. I hoewever think this is part of my body being insanely out of wack at any given hour of the day..... Again, energy medicine.
The "Eden" as I call it, or Adeny____ whatever at this current time I am not going to focus on. I want to try and heal my soul and my pain.. the possiblity of yanking out my girlie parts, just isnt one right now.... Doc Energy Medicine told me that Chinese believe that our body harvests memories, in the forms of energy. She asked if I ever had tramuatic experience when I was younger. Said yes, when I was 15... Oddly enough when my pain/trama started... So we shall see. Again. Time to heal the soul.
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