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.

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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

 

 

Infertility with Endometriosis: Lupron & Daily Living

In 2012, my husband (H, then 21yrs old) and I (then 19yrs old) married only to find out our chances of ever starting a family were slim. I was diagnosed with Endometriosis and PCOS. I went through 2 surgeries, multiple Drs and fertility treatments such as IUI with Clomid and HCG shots. It didn’t work.

I was then recommended Lupron which, in my opinion, is an awful shot that you receive once a month for 6 months. It has very bad side effects, short and long term like menopausal conditions, osteoporosis, paralysis, and even death. There have been lawsuits against the medication because the pharmaceutical companies are not releasing all the possible serious side effects and Drs are being paid off to recommend Lupron. My Dr never once explained anything about it to me other than menopausal side effects. Also, Lupron does NOT eliminate endometriosis it just, more or less, stops it from progressing any further and without a menstrual cycle it’s not thriving.

So, you have to weigh the pros and cons. For me, my menstrual cycle started back up during treatment and the pain turned for the worse; Lupron was a disaster. I gained 20lbs, had horrible hot flashes, shortness of breath,  extremely bad nightmares, and the pain never stopped for me. After my 4th shot, I stopped it all together and I am now waiting to go see a NEW Dr for another opinion after we get back from vacation in September!

What I did decide to do though is see my Primary Care Physician (PCP). Yesterday, I met with my PCP and finally asked for what I have been holding out on for 3 years. Pain killers. I am now at my wits end and am hardly able to work, do house chores or anything that isn’t laying on the couch with a heating pad. I am now 21 and H is 23 and we want to be able to be active and do fun things especially since we cannot have kids, we want to ‘Live Life to the Fullest’.

I have now been prescribed Vicodin for pain and Elavil for sleep/depression/pain. PCP also is referring me to a neurologist because my endo is on the ligaments of my right leg causing nerve pain from mid back all the way down my right leg to my toes. I was also in a car accident in 2011 that has played a big roll in this specific pain area for me. For now, I just have to wait and see what happens while doing  the best I can.

xoxo