Endometriosis Awareness Month

Well, as most of you know (because I bugged everyone on Facebook) March is Endometriosis Awareness Month. As we are in the final day of the month, I thought I should post (not just because it's been awhile) my struggles with this disease, how much this disease has not only affected me since my teen years (before I was even diagnosed..Mom says she always knew) but affected the last three years of my life. It's affected my relationship with my husband, my friends, even my family. It's shook me to my core at times, it's had me hating life, it's had me so angry at God, and yet, in the past three or so months it's helped create a relationship with God that I wish everyone could experience. I'll end the blog with some recent updates with my health for those of who you don't know, and then I'll try to remember to blog more often, per mother's orders :)

It's been close to three years since I was diagnosed. Like I mentioned before, my mom says she always knew. It took a lot of visits to my Ob/Gyn in Hanford, a lot of ultrasounds, a LOT of months of him just telling me to wait it out and see if I would get pregnant (as this was something else we were pursuing and seeing him for) before he finally agreed to a diagnostic surgery due to the fact that I had a large mass on my left ovary. I was scared out of my mind to have surgery, but just knew I was going to get the answer I'd been looking for all these years. Obviously, yes, I was diagnosed. Thrown on hormones and told to come back every three months to see how I was improving. I wasn't. I was actually getting worse. But I had started back at work (after being out on disability for about 9 months due to Mono, problems that I can now say were due to the Endo, and some other health problems) and was hoping that maybe getting back into a routine, excersising daily, eating healthy might help my symptoms. It didn't. I was forced to resign from my position at the bank after having multiple fainting spells that were pretty bad. My Dr. wrote me off "indefinitely" until they could figure out exactly what it was. Well, pretty sure I knew what it was..but she was sending me to neurologists and things like that. Ultimately, the bank couldn't hold my position while I was going through all of these appointments, tests, trying different medications, ect. I understood of course, and knew there was no way I could even hold a job. Thankfully though, the disability through that company has really been on my side and I still recieve a monthly check. That has been such a blessing, even if it isn't what I was making, every bit helps.

So, I then started the quest to find a specialist. Not an Ob/Gyn. Their main focus is delivering babies, and I needed someone who was educated about this disease and was an actual surgeon. In March of last year, I was referred to one in Fresno by a woman at David's work who's daughter also has Endo. Just from going over pictures from my previous surgery, hearing all of my symptoms, and performing a "deep tissue" pelvic exam which left me basically lifting up off the bed, screaming and in tears, he knew my case was bad. I was scheduled for surgery that day, for about a month and a half later. On May 9th of last year, I underwent an almost five hour surgery of him cutting out this disease that he says I was "covered in" and was one of the most complex cases he's ever seen. I also once again had a very large mass on my left ovary. It took me a very long time to recover from that surgery. I got very minor positive results. Having sex was totally out of the option (My poor husband..and mom for having to read that part), but it was just way too painful. Might I add what a very patient and loving husband I have? That poor man ;) The left side was still in constant pain every day it seemed, my weight dropped significantly, I became more fatigued, and not because he didn't do his job. I was informed by him that it was Stage 4. The worst of all the stages. It would be a lifelong battle. Seven months past, periods continued to stay worse, left side pain got extremely worse, I basically was bedridden everyday it seemed. I decided to make a very hard choice, and have my left ovary removed.

When I came to him with this decision, he thought that he probably should have removed it in May, but in someone my age with no children, they do try to save them. But he agreed, it was probably beyond repair and not even functioning right anyway. So, on December 2nd..I said goodbye to that little bitch. Recovery was rough, but quick. I had I think one, maybe two periods that weren't bad, but as of now, I'm back to them being just as bad. It's something that I don't think will be fixed until I decide to remove all of those parts. Again, sorry mom, but I do once again have a sex life (Yay for David! Haha) as I don't have that constant side pain anymore, or any pelvic pain really until it is time for my period. I haven't actively tried to get pregnant, as far as timing it with ovulation and all of that just because I feel we went through such a rough patch with it before, that I don't want it to seem like a job. David doesn't deserve that, at least for awhile anyway :) I unfortunately do still suffer with the fatigue and dizzy spells, and have passed out a few times during my periods. I forgot to mention through all of this, the bladder issues I had been having since around the time I had that surgery in May of last year. Well, looking back, I've had them for awhile, it just got drastically worse. I've always, even since I was a kid, had issues with frequency and urgency. I also would get that terrible pain that only comes when you get the oh so fun UTI..but yet when I would go to the Dr. I would test negative for the bacteria in my urine.

In the past year, it's become very painful. My bladder aches after urinating, especially first pee of the day since it's been sitting for awhile. I wake up at least 4 times a night to pee, the "UTI feeling but not a real UTI" pain was a weekly thing. I started researching online. I found this disease called Intertisital Cystitis. I had every symptom listed. It is an auto-immune disease that attacks the lining of your bladder. It is very common in women with Endo. So, two weeks ago I saw a Urologist who was able to confirm that yes, I do have IC. It is yet another, uncurable, lifelong disease that as Wikipedia puts it "is a devastating and very painful disability". Oh yay. I had read months ago that "triggers" for IC are things like caffeine, citrus based drinks, drinks with citric acid, bananas, alcohol (Nooo!), tomato based products and a few others contribute to having "flare ups". So I started doing tests. I've always been a huge lover of anything lemon or lime. Lemonade, Strawberry Lemonade, those oh so delicious Limeades from Sonic (Oh Lord, how I will miss you)..I noticed that after consuming one of these drinks. I was peeing constantly, sometimes up to four times an hour, and the bladder pain and achy feeling would start as soon as it emptied. Same thing with caffeine. Alcohol..well. Beer has always done that to me. Tossing back a few beers with the hubby and some friends would always have me running to the bathroom all night, so I cut beer out awhile ago, before I even knew about IC. One of my favorite cocktails, a cheap one I could make at home, was Malibu Rum with Pineapple Juice. Thinking back to all the times I had them, it was the same thing, back and forth to the bathroom all night. So, I'm strictly a wine girl now. Whites only, as Reds seem to have a similar effect.

It will be hard. Well, it has been hard. I started cutting these things out months before I was even diagnosed just to see how it would effect my body. It's hard to go out for drinks with friends and not indulge in my good 'ol Malibu cocktail, or a Midori Sour which I also loved. It's hard giving up Coca-Cola, and coffee, iced tea has always been a fave of mine (which I always added Sweet 'n Lows too which is a huge no no with IC patients. None of those artifical sugars are allowed), even a cup of hot tea I can't have. Don't tell my Grandma Blair that, please. They still have tea times back in Norwalk (They're from Ireland..it's what they do) and turning down a cup of tea..will earn you a not so nice look from that lady.

So..what is my treatment plan for this lovely new disease I will now have to deal with forever? Well, it includes a six week bladder treatment. Once a week we'll have to make the drive to Fresno (I'm so fed up with those by now), and I will get to say hello to my friends the stirrups. She will be numbing the urethra, then inserting a catheter to numb the bladder and fill it with medication. Sounds fun right? I'm pretty nervous about it, but am desperate for relief at this point. I feel like the ladies on those bladder control commercials where they can't partake in any activities with their friends or family because of their bladder control. I don't let it stop me from doing that, but I'm surrounded with understanding people who know that if we're on a road trip or whatever and I say we need to stop so I can pee, they know it's serious business. In fact, I have such great friends, that when we took a Disneyland trip back in October, they didn't mind all of my million bathroom trips :)

So..where do I go from here? I'm not sure. But I know in these past three years of dealing with Dr's, who, some of them didn't want to listen, ER trips, procedures, surgeries, invasive exams, a bajillion blood tests, medications, nervous breakdowns and yes, even therapy..I've learned that I'm a fighter. I won't let these conditions bring me down. I won't let them break me. They make me fight harder, and appreciate life more. Not saying I was at a point where I could have died, but let's face it, my quality of life hasn't been the best in the past, I did want to give up (not in a suicidal way..just give up and not fight back). All I know is that not only has it taught me so much about who I am, who I want to be, who's there for me and who's not, but it's brought me closer to God than I have ever been in my life. I decided, there is nothing I can do about my conditions. Crying and getting depressed isn't going to change it. It's only going to bring me down to a bad place that I've been once before and refuse to get to again. I sat one night on my couch and felt this overwhelming sense of peace come over me. I started to pray for strength, for understanding, for healing, for all of my relationships. God was quick to deliver. This was back in December, and I can't describe how much it has changed my outlook on things already. I read my Bible everynight, I pray a few times a day, a lot of times David prays with me. I am at peace with this difficult body of mine. God made me this way, and yes, while I have cursed him in the past, I know He has his reasons. He will not give me more than I can handle. In the past, I couldn't handle it. But now, I can. I'm positive about things. I know He is there by my side through it all.

So, are you wondering, where does a Baby Van Ingen fit in with all of this new stuff going on, like with the bladder treatments, the ovary removal, ect. Well, this is another thing that God has helped me with in so many ways. I can honestly say, I no longer sit and wonder "Why me? Why can't you just give me a baby? This isn't fair! Blah Blah Blah". No. I really feel that God knows my heart, he knows that being a mother is the most important thing in the world to me, aside from my marriage. He has helped me realize that..it's time to move on to the next step. I am confidant, because of what I have felt from Him, that this is going to bring us our baby we have waited so long for. We have made the decision to move on to IVF. My amazing parents are generously helping us with this decision, and I can't say when exactly we will start the process, it is in the near future. We do have a consult on April 17th just to meet with the Dr, have him look over my case, get the estimates of the cost, learn about what all I will be going through, ect. We also want to make sure that I'm healthy before we start the process. I currently am still struggling with weight issues, so I would like to get up to at least 100-105 lbs. I also have a severe Vitamin D deficiancy that my Endocrinologist is dealing with, and then of course the bladder treatments. Ultimately, I am hoping we can start the process in late Summer. Which could end up with me being pregnant at Disneyland in September, but hey, Tower of Terror can wait :)

I have an Uncle in Arizona who is a very spritual man. His daughter, my cousin Sarah is the closest thing I have to a sister. She has been right there with me since I began this new relationship with God. She told me that her dad confided in her a few months ago that one morning while he was reading this Bible and then praying afterwards, he felt God put it on his heart to pray for myself, David and for our baby. He said it was like God spoke to him and told him that we need to stay strong and that our baby is coming. I thought that was so amazing. Being as, I never really see him (He is divorced from my dad's sister and has been since 1996, but I still refer to him as Uncle Steve because I grew up with him, and he still treats me like family when I do get the chance to see him) and don't have a close relationship, but yet, God still put this on his heart. When I heard this, it brought me to tears. The next day, I realized how much God has already changed the way I'm looking at things. If I would have heard this say, a year ago, my initial reaction would see this as a sign and I would basically put all my hopes into this and think "Well that means it's true, it's going to happen!". I didn't think that way at all. I thought it was amazing and so beautiful, and I appreciate it beyond words can say. But because I trust in God, that he is leading me down this path, that he knows what's best, he is leading me towards eventually becoming a mother, and if he feels the need to put it on other people's hearts to pray for us, well than that's just awesome. But I can think rationally about things like this now. Thank you Lord.

So, as Endometriosis Awareness Month comes to an end, for the first year in a long time..I am at peace with this disease. Like I said, I refuse to let it break me. I have many people to thank for standing by me, for being my biggest advocates, my shoulders to cry on, my safe place. God, first and foremost. David, for being the most kind, loving, compassionate man I could have ever hoped for. Thank you for understanding. Thank you for not letting me give up, for picking me up off my knees when I just couldn't do it myself, for taking such amazing care of me after every surgery, and still finding me what you say as "The most beautiful woman I've ever laid eyes on" even afer having to change my catheter bags. For never thinking I was crazy, and for being my biggest fan at all of the Dr's appointments and never letting them try to convince me "It's all in your head". To my parents for always being there to listen, for helping financially in times when we've needed it, physically in times we've needed it, and emotionally in times we've needed it. For not thinking I'm crazy after all these years, and for loving me during the times when you may have thought I was :) To my best friend Marcy for being the Christina to my Meredith (You Grey's Anatomy fans will get that one), for always checking up on me, and even coming and beating on my door if I haven't responded to an "Are you ok text". Her and her husband are truly blessings in our lives, as our my parents, and many other family members I haven't mentioned.

I will end this by thanking all of you who have helped me spread awareness this past month, even some who have donated to the Endometriosis Foundation of America. I will have to add a picture to this blog later of me in a customized shirt promoting awareness. It's pretty awesome. I'm also posting lyrics to a song that fits my life with every single word..

I've been a walking heartache
I've made a mess of me
The person that I've been lately
Ain't who I wanna be

But you stay here right beside me
And watch as the storm blows through
And I need you

Cause God gave me you for the ups and downs
God gave me you for the days of doubt
And for when I think I lost my way
There are no words here left to say, it's true
God gave me you
Gave me you

There's more here than what we're seeing
A divine conspiracy
That you, an angel lovely
Could somehow fall for me
You'll always be love's great martyr
And I'll be the flattered fool
And I need you
Yeah!

God gave me you for the ups and downs
God gave me you for the days of doubt
And for when I think I lost my way
There are no words here left to say, it's true
God gave me you

On my own I'm only
Half of what I could be
I can't do without you
We are stitched together
And what love has tethered
I pray we never undo

Cause God gave me you for the ups and downs
God gave me you for the days of doubt
God gave me you for the ups and downs
God gave me you for the days of doubt
And for when I think I lost my way
There are no words here left to say, it's true
God gave me you, gave me you.
He gave me you.