What people don’t know, could teach them a thing or two.

A guy (who is a regular at work) told me today “you’ve gotten ‘slower’ since you dyed your hair red.” At the time I wasn’t really thinking about it cause I was busy trying to get his transaction done. But now I’m sitting here thinking. What an ignorant ass comment to make. The truth is yea I am slowing down. NO it’s not because I ‘dyed my hair red’. It’s because every day my pain increases. Today especially, was a hard day for me. Constant cramping/stabbing pains. On top of it my stomach/bowels are acting up. I just love how people never once think about what they’re saying before they try to put you down for something that they have no idea about. 😦

On another note I’ve done some research and since I started the Lupron shot 6 months ago (I am done with it) my blood pressure has been high. But now that I am off of it my blood pressure is still not coming down. I’m considered Prehypertension, borderline High Blood Pressure. My pulse is higher than it used to be. I also ran a low grade fever the entire time I was on Lupron which was very odd for me since I’ve always ran rather low and lower than the norm. Thankfully my temp has come down recently but the blood pressure and pulse, no, it just keeps rising.

When I tell people I feel different, even if I can’t explain how/why I feel different, believe me I’m not the same at all. This is one of those instances where I can prove the difference as well as the 20+ lbs I have put on since April. I was 115 when I went on the shot..granted I had just been sick and lost a little weight. I am now up to 138-140lbs. I have NEVER weighed this much.. it might not be a lot to you but when I no longer fit into anything that I just recently bought because of weight gain, it upsets me. I just feel different. I don’t feel like me anymore.

xoxo

Stage 4 Endo. Time for Hysterectomy

Today changes everything. My Dr finally gave me a stage. Stage 4, most severe and very aggressive endometriosis. He is sending me for a colonoscopy (wasn’t expecting this at all!) because of my current and past issues of bleeding with constipation and diarrhea. He’s worried of the possibility that the endo has burrowed inside my “poop shoot” (as he calls it so I understand). During past surgeries, the exterior of my bowels looked fine but he explained that the inside could be a different story. Truthfully, I think it will all be okay.. maybe just hemorrhoids. My intuition is usually pretty good when it comes to my body/health…. so hoping that I’m in the clear.

Next month though, I am having a partial hysterectomy. I will have my uterus and my right ovary removed. Leaving the left ovary so that I don’t completely lose all hormones. I am going to try to prolong the removal of my left ovary for as long as possible. 9 out of 10 I will eventually need to have it removed though. He also plans to remove the endo that’s on my right bilateral ligament and nerves, if still there. I see the neurologist tomorrow and am curious to see where he thinks my nerve pain is derived from whether it be my back or pelvic region.

Most women and especially young women as myself, would be upset about a hysterectomy.. but I’m not. I feel like this gives me control of what is going on. Now I know that this isn’t a cure, I very well could continue to have pain and endo. BUT it will help. I don’t feel that I will be less of a woman without a period/uterus. I’ve been dealing with the loss of not being able to have children for many years now, a hysterectomy will only help me close that chapter and start new. I realize that there may be more emotions and feelings to come still before and after the surgery but it’s nothing I can’t handle. I’ve been fighting my own body for far too long! I can and WILL handle what ever life may throw at me, it’s what I do. 🙂

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! 😀

Lesson Learned

Well my “vacation” has come and went. Unfortunately it did not go quite at all as we had planned. In fact it was by far the worst vacation I have ever been on. My mom, husband, and I got a long great. On the other hand, I had to learn a hard lesson about my Aunt. While I was hoping to spend a lot of time and make good memories with her since she has Small Cell Lung Cancer, I was in for a rude awakening.

Turns out the only things ‘important’ to her were chain smoking and skyping her family back home. I was taken by complete surprise. She also treated me personally, like I was dirt on the ground. She continuously called me a bitch, claimed that I needed to take my ‘meds’, claimed that I was being mean to her, and that she should give me pills that would help my mood swings and bitchiness. All of this literally came out of nowhere. I calmly explained to her that yes my hormones are imbalanced due to the injection of Lupron which put me into a menopausal state. But even my husband and mom agreed that I was acting very normal and was not treating her bad at all. Actually I acted as if everything she said didn’t bother me and laughed it off to not create waves. She attacked me for having a disease that I cannot control and tried to down play the severity of my disease.. that I just like to complain about it. Someone that I thought cared about me as I did her really showed me who she really is.

Then at the end of the trip it all came to a head. My aunt stole my vicodin and of course she lied and denied it. But it all finally made sense. She was so irrational and mean towards me the whole trip because she was under the influence. Drugs make people do things that normally they would never do. I learned a hard lesson. Although she has cancer I can no longer feel bad for her. She’s chain smoking like you would not believe and she has LUNG CANCER! She’s using the cancer as a crutch to steal, lie, and get high. Meanwhile, everyone is feeling bad for her. I’m sorry but I can’t.

The great memories we wanted to make is now just a vacation I wish I could forget.

My Invisible Illness-You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Endometriosis/PCOS/Infertility
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: 2012
4. The biggest adjustment I’ve had to make is: Never having children & living with pain EVERYDAY of my life.
5. Most people assume: I exaggerate/fake it.
6. The hardest part about mornings are: Moving around/Showering/Getting dressed with severe pain.
7. My favorite medical TV show is: The Doctors
8. A gadget I couldn’t live without is: Phone
9. The hardest part about nights are: Trying to lay down in bed when my body hurts so badly from the current day.
10. Each day I take 3+ pills & vitamins.
11. Regarding alternative treatments I:  have tried Fertility treatments, Surgeries, Birth Control, Lupron, Herbal Meds and they did not work. I’m contemplating a hysterectomy that will definitely help.
12. If I had to choose between an invisible illness or visible I would choose: Not sure but I think people would better understand an illness that was more visible.
13. Regarding working and career: It’s nearly impossible. I hardly make it through the day, the days that I am able to actually work.
14. People would be surprised to know: that I have spent 6+ THOUSAND Dollars on trying to conceive a baby and IVF would cost me an additional $15,000 per try.
15. The hardest thing to accept about my new reality has been: I will never have children.
16. Something I never thought I could do with my illness that I did was: make it through the day.
17. The commercials about my illness: depict barbed wire wrapped around my abdomen. Pretty accurate.
18. Something I really miss doing since I was diagnosed is: having a sexual relationship with my husband.
19. It was really hard to have to give up: having a family. No one will ever understand that loss.
20. A new hobby I have taken up since my diagnosis is: Blogging.
21. If I could have one day of feeling normal again I would:  try to get pregnant.
22. My illness has taught me: to be thankful for everything that I do have in my life.
23. Want to know a secret? One thing people say that gets under my skin is: I know someone who got pregnant with what you have, it’s not impossible. You’re still young you have many years to get pregnant. (NO I don’t have many years and NO it’s NOT that easy for EVERYONE to get pregnant. My disease is very severe.)
24. But I love it when people: try to understand and don’t judge/attack me for the truth of my disease.
25. My favorite motto, scripture, quote that gets me through tough times is: Never Give Up. When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure.
26. When someone is diagnosed I’d like to tell them: It’s not going to be easy but don’t give up.
27. Something that has surprised me about living with an illness is: how quickly people/friends/family will judge you and how people think they get it when in fact they have no idea.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband listens to me, rubs me when I’m sore, helps pick up the house and takes care of the animals when I can’t.
29. I’m involved with Invisible Illness Week because: I want people to be more aware of Endometriosis and how life altering it really is.
30. The fact that you read this list makes me feel: good.

The next step

Today I made my neurologist appointment! Now that’s the next step. I’m not going til October because we are going on vacation next week and will be gone for a week and a half. BUT I already feel relieved that maybe there is something that they can do. I also plan on making an appointment with a new reproductive endocrinologist for next month. I’m faced with a lot of decisions.. and even MORE Drs but I have to believe something good will come from it.

I go back to my PCP this Thursday to find out if she would like to send me to a Pain Management Specialist. So far with the Vicodin and Elavil I’ve had a pretty good response but hormonally I have been all over the place. Mood Swings. Hot Flashes. Night Sweats. Abdominal & Back Pain. & more. Due to the Lupron I’ve only had one menstrual cycle in the past 5 months… but that’s the idea of Lupron – no estrogen, no menstrual cycle, no endo growth, no pain. If only it worked that way. I still have pain, intermittent menstrual cycles… and now I play the waiting game on when my cycle will start again… for all I know it could never be normal again. -Causing more problems.

Hmm.. Hysterectomy sounds even better. I already have the majority of menopausal side effects anyways… but atleast with the hysterectomy -No up and down hormones, chemically induced & I no longer would need to wonder, am I pregnant this month? “Stupid Bitch of course you’re NOT LOL!”

Decisions, Decisions. Ready to close this chapter. Everyday is a day closer. Is it too much to ask for my life back?

xoxo

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