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! 😀

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

 

 

Don’t Write Checks Your Ass Can’t Cash & don’t lie!

Recently, I had to make a hard decision that will most likely impact the rest of our lives, regarding a close relative who repetitively lied to us. You should never lie to someone that you love especially if it’s just to make yourself look good or the recipient of the lies feel good.

Two things that mean the world to me:

1. Our Wedding Day 2. Our struggle with infertility & the costly treatments.

Unfortunately, we are not the richest couple in the world and when it came to planning our wedding day we had a decision to make:

1. Elope in Las Vegas 2. Destination wedding (Cruise or Island Wedding) 3. Save money and plan a big fairytale wedding.

Truthfully, we were leaning more towards 1 or 2. But that would obviously mean that certain close relatives would not be there due to financial restraints but then again it’s about us and what we want. So what one relative did (I’ll refer to this person as B) in order to get us to do a local wedding was offer to pay half for our wedding and my mom agreed that she would pay half. We never asked for this money, Mom and B insisted this was their gift to us so we could have our big day.

So we set the date and originally planned for a $5,000 wedding. But B was continuously making excuses as to why they didn’t have the money, “Next payday, next payday” or “Income tax time I’ll give you the money.” The excuses continued through all of our planning and eventually our budget grew to $10,000. My mom told B to just pick up the $2,500 like the initial agreement and she would pick up the rest.

By our wedding day, my mom had paid for our entire wedding out of pocket and B got away with literally paying NOTHING, not even a wedding gift. I let this go for the sake of our wedding, but it hurt and was hard as hell to deal with!

Two years later, we were faced with trying to cough up the cash for IVF because the Dr told us after failed IUI’s and the severity of my endo, the only way we would get pregnant was In Vitro. There was no way we had that money or could finance that money, it was impossible. But one day B told me how they went to the bank and were going to take out a home equity loan to do some house repairs that needed to be done. So knowing how close I am to B I threw the idea out there that maybe B could help us out by taking extra money out and we would make the monthly payments so we could do IVF.

B thought the idea was great or so they made me think. B told me 3 different times that they were going to the bank to find out if they could take the loan out and each time made up an excuse as to why they couldn’t go. Knowing how important this was to me, due to my endo issue I didn’t have time to kill, I was growing very upset that I was getting lied to again and again.

Finally, another issue close to my heart with B arose that hurt me badly with B’s kids who mean the world to me. I treated them like they were my own and would take a bullet for them in an instant. For 3 years I have deliberately not been invited to their birthday parties, the one day all year that is JUST ABOUT THEM. I say that it’s deliberate because the last birthday it happened on I made a big deal about how much it hurt me and asked that it never happened again. But once again I wasn’t invited to another birthday and that was the straw that broke the camels back. I lost it. I called B out and basically told them how they managed to lie to me over and over again regarding the TWO MOST IMPORTANT THINGS IN MY LIFE, and I was done! The reply I got was that B couldn’t find a babysitter for the kids (knowing I would of watched them had they asked or B could take them along) I knew I was lied to again.

It has been almost 2 months since I have talked to B and all I can think of is if B really loved us B would of never lied to us or deliberately played with our emotions. This just shows what kind of people they are. Why is it so hard to just be honest with someone? Why do people feel the need (especially someone who is SO CLOSE to us) to do this? I never got an I’m sorry, I got, “You are right, I’m so imperfect I should not be here.” Why do they have to throw a pity party for themselves and suggest ending their own life? All B had to say from the beginning of both situations is I can’t do it. Not offer to do it, knowing you can’t. I learned a big lesson and now I know who I definitely cannot trust. Not every problem with B that made me come to this decision regarded money. Things built up over time and these 3 situations were deal breakers because they meant SO MUCH to me.

It’s just hard for me to understand why? Why hurt us in this way? All I wanted for my life was to get married and raise a family. Although I can have a fulfilling marriage, I cannot have children. For someone to knowingly play with my heart and not care that it’s all a lie, just kills me.

xoxo