Thursday, February 12, 2015

The Current Happenings of Me...

Today's entry is a bit of a tough one for me, but needs to be discussed so it can be more comfortable for the person(s) who may experience a similar situation at some point, that person could even be you. I certainly hope not, but you never know. 
I'll begin with what is my "Now".  
The current happenings of me are not pretty, it's actually really just awful.
It is seriously one of the darkest times in my life. We've all experienced a hard time, but this so much more.
I'm not seeking pity, just stating how things are, It is what it is, right!?!
There is a silver lining, I'll get to that soon.

I suffer from stage IV Endometriosis, which needless to say is nothing short of terrible to say the least.
If you are uncertain of what Endometriosis is or would like more information

So currently I am dealing with severe endometriosis, which causes a multitude of symptoms which include: fatigue, severe pain, lower back pain, bowel issues, and many more.

Not only am I dealing with Endo (Endometriosis), but I am dealing with so many other things and details.
In mid 2014 in early summer I found out that I have a huge cyst on my right ovary that will most likely need to be surgically removed. This causes me tremendous pain, and puts a huge strain on that organ. This isn't the awful pain like when you stump your toe, it's actually 100 times worse. Sounds unbelievable I know. This pain will take your breathe, take your balance, and make your body bend in ways that are not normal.  I have fallen to my knees, unable to move, vomited, and passed out due to this. Somewhere around this time is when I began needing heavy pain medicine just to function and be able to get up and do daily activities.
I knew at this time that I could no longer fight this horrid disease. It was taking it's toll on my body and is now claiming my organs.

I knew it would happen one day...
It is time to schedule a very serious surgery and reclaim my life. My body is losing the fight.
I have so many issues with this. I am unsure of why, but I will admit that I am having a very difficult time.
I know women have hysterectomies all the time. I'm sure some of it has to do with losing parts of my body.  It is just so unfair. I am not only having a hysterectomy because a hyst alone will not "cure" or help very much, because I have widespread endo. I have Endo on my ovaries, uterus, bladder, bowels, and in many other locations in my abdominal and pelvic area. All of these areas would need to be addressed to prevent growth of endo later down the road.  *Endometriosis lives off of estrogen, many believe by taking ovaries, they take estrogen away and endo will die.  This is not the case in severe cases.  Endometriosis creates it's own estrogen. It's not the amount the ovaries produced but estrogen is still present, therefore there is still growth and complications.  Estrogen is also found in many foods*  To properly be treated in my case, I need excision surgery to remove the Endometriosis so that my other organs can be freed of the disease.

I spoke with the surgeon.
That was very exciting, after all he will be one of my heroes. He is extremely skilled and only specializes with endometriosis. His name is Dr. Ken Sinervo. He practices at the Center for Endometriosis Care. There are only a handful or two of surgeons currently in the US that are skilled enough to perform this type of operation successfully. He explained to me from my medical records and symptoms what types of procedures we will begin with, and once inside he will address other areas as needed. Currently there are 5 known procedures ahead of me. He tells me that my surgery will last at least 6 hours, but be longer. This makes me extremely nervous. I also learned that I suffer most likely, with adenomyosis, this causes sever pain involving the uterus. FYI- My husband, Jacob will keep everyone informed until I am able to post.

Over the past few months I have had numerous ER and doctor visits due to unbearable pain.
After several visits, I find out that I now have another huge cyst on my left ovary.
This revelation was so disheartening, as I was in high hopes of being able to salvage my left ovary if possible to balance hormones.  This was it, I would have to lose it as well. 

My feelings are so unlike me. I'm not a resentful or angry person. I try to be upbeat and positive, but currently I am having such a terrible time. I have never felt so helpless in my life, so fragile and vulnerable.
I do not like it one little bit. My hormones are raging due to the strain that both ovaries are now experiencing. I'm in constant pain and on medications, this makes me irritable at times.  So put that with a hormonal imbalance and that is a dangerous concoction.  I am saddened that my body is so broken. I hate that despite the fact that I knew it would happen one day, it hasn't made it any easier. I am devastated. I'm not trying to be dramatic, but I feel so jaded. I don't want to lose organs. I feel that I have failed, I've lost the battle. I know that truly isn't the case, but I can't seem to help the emotions regarding it. This is hard. This is sad.

On to more feelings, lucky you ;)
I have had to set up a crowdfunding account. Regardless of how wonderful that opportunity is, it is still so humiliating to some degree to expose yourself, the parts of yourself that you aren't happy or proud of.   How awful it is to not be able to take care of yourself. I do not want anyone's pity, I only want understanding and awareness. I have insurance, but because I am going out of state and to a specialist, there is a lot of expense up front.  This isn't even counting the expense of travel and needing to be in Atlanta for several days. It's quite costly.  I will also get smacked with the remainder of bills after the insurance does their thing.
 Over the last year, my medical bills are nothing short of ridiculous, but that is nothing new with this dreadful disease. I've had issues with medical bills as longs as I can remember. 
This disease is expensive.

I am a nervous wreck and I am so scared. I am told by my doctor to avoid stress at all costs. I've been prescribed two types of anti depressants, one is supposed to help me rest. I know we can all use some help sometimes but I truly hate having to medicate myself with chemicals and drugs. It is helping some, I suppose but I would really hate to see me right now without them. Between nerves, hormones, and severe pain, I honestly feel like I just can't cope at times.  I am not this person.

It is critically important for people to recognize endometriosis as the serious disease that it is. Endometriosis will steal me of my organs, it has caused me to have multiple surgeries, and I'm awaiting a huge one. It has stolen birthday parties, holidays, and lots of special occasions that I should have been a part of. It has stolen memories and so many days of my life. It has taken jobs and opportunities. I plan my life around a calendar that I know without a doubt 7-10 days of each month will be a living hell inside of me.
Endometriosis will try to take my life. Slowly it will attach itself to my organs and insides, where it has made it's home. It will invade areas of my body and implant itself as if it has found a new land.  It will squeeze my organs, it will cut of blood flow. My body will scream for relief but that is so hard to find. Heating pads, medications, narcotics, and scalding hot baths/showers
help, but still the pain will remain.
 Any relief is temporary and short lived.

The current happenings of me are not pretty, it's actually really just awful.
You will read a post before long about one happy lady. 
 She will be free and She is Me.
I will have a life changing surgery, in just a short number of days (12 to be exact) It will be thanks to so many people who cared enough about me to help. I had to go out of my comfort zone, and when I did I found the most amazing people. They are the people who truly care about the being of my life, my existence. There are still wonderful people in the world who care. I was beyond touched by you all, a place in my heart is reserved for each of you. Complete strangers reached out to help me. My heart is so full of thanks and joy.
The thing that I most dreaded to have to do, to ask others to help me in ways that I couldn't help myself, turned into so much love. Humiliation was turned to an outpouring of love and support. I am honored to know you all. There are not enough words to express my gratitude.  Soon I will return to a time before pain, I'll feel 14, ;) I will again be able to exercise, I will be able to exert myself and not have to rest for days. Overdoing it won't be so easy! Get ready everyone, positive and upbeat Krystal is coming back!

Endometriosis awareness will forever be very important to me, This disease needs awareness so that young girls and women don't have to suffer unnecessarily as many others and myself have. If you or someone you know may be experiencing anything similar to Endo, you are concerned, or would just like more info, Please feel free to contact me. If you have endometriosis, I know of many support groups and other women who would love to be there to support you through your journey, me included. It isn't easy and you are not alone.

The Silver Lining...
The silver lining for me is you, the one's of you who have cared enough to follow my story and support me. You have no idea how amazing you are, I never imagined that I could experience this wonderful feeling of an outpouring of support and love.  I know that I am loved and I want you to know that I love you!
Thank you from the bottom of my heart! 

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