I’m Just A Science Experiment

UPDATE: After seeing the neurologist today… I have to get an EMG test done. Poke me with needles and stimulate my nerves to find out what is wrong with my right side. He did note my right leg is definitely weaker than my left. He also upped my Elavil. So I see a: Reproductive Endocrinologist/OBGYN, Neurologist, Gastroenterologist, and Nurse Practitioner (My PCP). That’s ALOT of specialists/Drs. I feel broken and I’m just their guinea pig.

Unfortunately I can’t get in for the EMG until beginning of November, then have to schedule another appointment to get the results and I’m waiting for a call back to find out when my colonoscopy will be. I just really hope my hysterectomy doesn’t get pushed too far out because of all this. My RE was shooting for mid November but I don’t know. A little overwhelmed…

Now just trying to relax because I’m in a good amount of pain right now. Heating pad, Couch and Vicodin you will be my friends today!!!

xoxo

I am ready!

Next week I have 3 Drs appointments scheduled. Monday I see my reproductive endocrinologist to find out if he will give me a hysterectomy. I asked for one back in April and he agreed that if I really wanted it he would do it but wanted me to try Lupron first. So I did. But now I feel I am ready to make the decision. I’m ready to move on. I’m ready to feel better. Yes, I know that this may not completely cure my endometriosis and other problems may arise. I still feel that it is best for me. I’ve faced a lot in knowing I will never have biological babies. But there is a reason for everything. I am stronger because of it and I appreciate life in so many more ways now.

My 2nd appointment is on Tuesday with the neurologist. I think this will give me more insight on whether the nerve damage in my leg from the endo will be able to be controlled. I do think this will be my problem area even after a hysterectomy because my RE is unable to remove the endo in that area. It is on a main artery and could create much greater problems for me like internal bleeding, skin grafts, and worse. Only time will tell. I JUST WANT TO FEEL BETTER.

My 3rd is on Friday with my PCP to go over everything and maybe make some adjustments to my meds. She has given me tons of support and trying to steer me in the right direction address all of health issues correctly. It really feels good to have a Dr that truly cares and doesn’t just try to rush you out the door.

So big things are coming next week. TIME TO KICK ENDOS ASS!! I Am Never Giving Up! 😀

Imagine This

Here I am 21 years old. Dr says, “From your diagnosis you may never have kids without fertility treatments. We can try Intrauterine Insemination (IUI) or Invitro Fertilization (IVF) but it’s very expensive and there are certainly NO guarantees that it will work.” Just imagine this for a moment.

All of these thoughts in my head, how could this be, how could my dreams be crushed in an instant, why me?

We spent several thousand dollars and dug ourselves into debt. Why? Because we were chasing our dream. Did it work? No. Although we did not try IVF because that is 10s of thousands of dollars and on top of our current treatment debt we are in no way able to dig further. But the chances of it working? UP TO a 40% chance. MAYBE. If you’re lucky. On top of that, could my body handle it? Treatments make my endo worse so chances are, no I couldn’t handle it.

But just take a minute and put yourself into my shoes. How would you feel if this news came to you after 4 years of trying to conceive.

Yes, Miracles happen everyday; however I can’t live my life everyday expecting a miracle to happen. So here I am almost 22years old honestly thinking about a hysterectomy. I want to close this chapter. I don’t want to continue to live with a what if or maybe a miracle will happen. Because frankly that f*cks with my head and emotions beyond belief.

I was asked the other day point blank, “So right now in this moment do you have any chance of getting pregnant – is there anything that they can do or you can take that will work?” This really made me think and made things much clearer for myself. The answer is no. There are no true treatments for endo. Fertility treatments did not work. There is nothing that they can do. But at 21 I should not have to face this. I should not have to feel like I have failed as a woman. Or be deprived of what many women around me can do so easily.

This happened to me because I’m supposed to be able to handle this and maybe you, the person that is reading this or that girl who is 8 weeks pregnant with her 2nd child, couldn’t.

Don’t get me wrong I am extremely grateful for the life that I have been given. I have an amazing husband who busts his ass everyday to put food on the table and take care of me when I am hurting beyond words. My mom is one of my biggest supporters. I have been inspired by my Aunt who has been diagnosed with cancer, to keep on fighting. And my animals keep me smiling day in and day out.

But please don’t judge me, please try to understand. I have a disease that is incurable and most days my body hates me. I’m grieving the loss of having children. I have my ups and downs. Some days I want to talk about it, other days I don’t want anyone even mentioning it. Naturally, I’m filled with anger, guilt, jealousy, sadness, and loss. But I’m working on it. I’m working on being a better me. I don’t want anyone feeling sorry for me, I just want you to be aware.

Unless you are faced with this you may never truly understand but atleast you can try.

Just imagine this and walk in my shoes.

 

xoxo