Well I completed my first week at my new job! I must say its a lot to learn (shipping/receiving). But I feel so good about it. From the minute I was referred for this job, to the interview, to now working there, I have had nothing but good vibes! I have finally found my purpose, my meaning. It is so great to be in an office and working with 10-20 people a day versus 1,000 (retail)! What’s also nice is I can relate a lot with the woman training me since she has gone through ivf and failed fertility treatments as well as marriage trouble. I feel for her greatly! But it is nice to be able to talk to someone and have them understand exactly what I’m going thru and vice versa. It is so hard for people to understand what you’re going thru and it feels like it’s just you in this big old world feeling this way… So when you start to meet people that are just like you, it’s a relief.
I feel like my life is damn near complete right now. Good job, great husband, and financially digging ourselves out. It’s good to feel good.
I drive around these old dusty roads
Pitch black with only the light of the moon
My mind is somewhere off in space
How did I even make it home tonight?
Every twist and every turn
Is burned into my memory
As the music plays
I relive the past.
I remember the first time, the first time
I drove down this old road
Now all I want
Is to just pick up and leave
Why can’t it be that easy?
A black night
A blue day
It’s all the same.
Listening to the music as it plays
Although it reflects
Many darker days,
I find truth in it
In so many ways.
“Through the eye
Of the storm
You are never alone
Even through, the shadows
You are never alone”
I’m so close
To the eye of my storm
Down these old back roads
Just to mourn.
As I seek change
I will always
Grow through the pain.
(Lyrics by Killswitch Engage)
Poem by yours truly.
I dream of getting the news of a newborn baby, of a beautiful babyshower, and shopping for little booties and onesies. One day my dream will come true. Maybe not tonight or 5 years from now. But it’s going to come true. I’m not sure how we will come up with the finances to bring a baby home but I really am determined. Now that I have come to the realization that I will never “give birth naturally” to a baby, I have more strength for the future. This has been so SO hard. I speak through my blog because YOU understand more than almost anyone physically around me. Everyone’s uplifting words, encouragement, and understanding is helping me more than I can express. This next journey in our lives will officially begin Nov 20th with my hysterectomy. It sounds so weird, but I’m looking forward to it. I need the closure. I’m a very realistic person and I CAN accept this because this is my destiny. It will mean the world to me to give a child a good, loving family that they may not of had otherwise. I am thankful for having a WONDERFUL, LOVING husband. We have stayed strong for each other through ALL of our ups and downs. One day our dream will come true. Our family will be complete.
Today I’m really struggling..
Have you ever felt like no one understands you? Or they really don’t care about you? That’s pretty much it for me. I’m not much for pretending to like people when I don’t or giving excuses all the time. And I really feel like it’s just me and absolutely no one gets me. Sometimes I want to just close up and not let anyone in. People ‘Act’ like they care but then ignore me when I decide to open up and talk about what is going on.
Truth is: I’m complicated. VERY complicated. I have experienced far more health issues, loss, and defeat than most 22 year olds ever will. I’m DIFFERENT. My mind doesn’t think about partying, I think about what am I going to do now? Where do I go from here? I don’t work at a job that I like. I’m having a hysterectomy and will never have biological children. I’m in debt due to my medical issues. I don’t like where I live. On top of it all no one understands me. Yes this is all the negative. But I feel defeated. After 5 years of trying for a baby.. and now I’m left worse than when I started. I looked up adoption and it’s going to be $20,000+ to adopt a baby. I don’t have that kind of money, I’ve never had that kind of money. Why does everything have to come with a price? Why can’t it come natural? I’ve worked so hard and nothing has gotten easier. I’m in so much pain today… I tell my friend and I get no reply. Maybe she’s tired of hearing me say it. I know I’m tired of feeling it. I need someone to decode my thoughts and tell me what I need to do.
I love being different and realize that most people couldn’t go through what I’m going through but I want to look forward to every day, not be counting down the minutes for it to end. I hurt more than ever… and it’s just me inside of this shell trying to escape.
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. 🙂
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! 😀
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.