Wednesday, February 12, 2014

Endometriosis

When I think about how long I have endured the pain, emotional struggle, fear, and mental fatigue of chronic pain I can hardly believe I am still encountering narrow minded physicians. After 20+ years living with endometriosis, I can safely say I am an expert on MY experience. I know what works and what doesn't, I know what it feels like because it's always the same. I find it so disheartening that I am still defending this disease and my journey to trained professionals, some of which "specialize" in Endometriosis.

I consider myself a success story. I am blessed with 3 children, the pain while chronic and severe at times does not land me in the hospital on a morphine drip every time I have a period. I have gone long stints without any pain. I can push through the pain and am highly functional. But please don't mistake my ability to keep moving with not being in extreme pain at times. I learned that life keeps moving regardless of the pain and if I wanted to be a part of it, push it down and keep moving. I had the support of my parents who fought for answers and found me amazing doctors that have listened to my story without comparison or judgement; but with empathy and compassion. 

Why at 35 years old, within one of the best hospital systems in the country, can I not find a doctor that gets it? The response I would get 20 years ago before I found my team at MSU was that of disbelief in the "real" pain. I've been told countless times through the years (as I have moved often and had to go on the hunt again and again for decent doctors) that it was "all in my head", "just suck it up", and even  "it can't be that bad". Haven't we progressed with understanding of such a disease by now? Apparently not. 

This is probably going to be a bit too much information for some of you, but if it helps one woman out there or inspires one parent to listen a little closer to their daughter's complaints than it is worth sharing something so deeply personal.

 It started again a few months ago, the same thumb press to the lower spine, lasting a couple days; last month the pain lasting about a week. This month it's been 13 days and counting. It feels more like a wooden rod pressed firmly on my spine now, my ovaries feel as if someone is squeezing them right to the edge of popping, my hips feel as though someone is ripping them from the sockets, and the whole length of my back is stiff and tight and sore. The worst right now are my hips, this is how they felt when I was nine months pregnant, horrible. It's subsiding, finally, but if it follows the pattern in the near future I will be in pain every day whether I have a period or not. Never have I been told, until today, that I didn't "appear" to really be that affected by it and the fact that I have long periods of relief from such a debilitating disease that he's "not even sure I have endometriosis, and would like to see my records." This is the first thing said to me, in his office, prior to any exam. He then went on to compare me to countless patients that are in "real" pain, describing mine as "discomfort". He stated if this even was endo; that painful cases have to have surgery every 2 years and since I've gone far beyond that, well I was not on the same level as them. Never mind that over the last 7 years, I went through infertility treatments, 2 pregnancies and breastfeeding all of which can suppress the disease much like the birth control. This all was irrelevant to him. And he wonders why the tears began to fall. I have been dealing with this type of ignorant, judgmental patient care far too many times and I know I can't be alone. It is time to share my story. 

At 14 I started having pain in my lower back. It started out feeling like a thumb pressing into a spot right above my tailbone. It was uncomfortable and really never went away. Over time the thumb pressing escalated to the feeling of a knife stuck in my lower back. Intense sheering pain, every day. I remember being a sophomore in Senior Robinson's Spanish class and standing in the back of the room because it was too painful to sit. At first we didn't connect it to my period because I didn't have "typical" symptoms. Cramping was minimal and really my only symptom was severe chronic lower back pain.My parents fought for answers. I saw orthopedic surgeons, countless other specialists, MRI's, x-rays, at one point I remember missing an entire week of school because of 9 different doctor appointments. I was offered cortisone shots and told that I could have a stress fracture in my spine and might have to stop dancing, what?!!?! I was devasted at the thought. Finally, a radiologist noticed a large mass on my ovary and brought this to the attention of my OB-GYN. She recommended laporoscopic surgery immediately and I was told I could wake up with a tiny scar under my belly button or an 8" incision across my midsection. If it was cancer they would take it all out. I remember not even computing what that really meant at 15, and only caring that the pain stopped and I didn't have to stop dancing. I'm sure my parents were freaking out, but they remained steadfast and strong. My poor dad over the years has become desensitized to anything squeamish in relation to "period talk" and he is still one of the first people I turn to on the subject. Thankfully I awoke to 3 tiny incisions and my girl parts in tact. I had a collapsed cyst on one ovary and what that tech thought was a large mass was in actuality both ovaries overlapping. Woot! No cancer! What they did find was Endometriosis and a lot of it. On the back of my bladder, my ovaries covered in scar tissue and more. No wonder it felt like a knife was in my back, the spots were literally compressing my nerves at the base of my spine.  It was a relief to know that the pain was gone and that I could continue on pursuing my dream. I was told it could come back and that my chances of having children were slim to none. If I wanted to try, my best shot was before I was 30 and only by IVF.  I went on continuous birth control and suppressed my period, having it every 6-8 weeks. The surgery cleaned me up and I put this chapter of my life behind me. I had no real comprehension of the struggle that lay ahead of me. I dealt with the possibility of not having children as a child, pushed it down and kept moving forward. 

I woke up in my apartment in NYC at the age of 20, and tears immediately streamed down my face. My parents were at a sewing convention in Chicago and I had them paged (this was before everyone had cell phones -- wow that makes me sound old). The pain was back. I hadn't felt it in years, yet I knew in a second what it was. We found a doctor in NYC through my roommate and got an appointment. My "system" of delaying my period wasn't working any more and the pain was becoming chronic. I would curl in a ball when I wasn't dancing or in class, lay on my heating pad, and dose myself with Vicodin. Afterwards I would not touch the stuff again. I learned at an early age the seriousness of prescription drug abuse and I was determined to not let that happen to me. As this was not a solution, she wanted me to try this revolutionary medicine that was supposed to work without surgery. She prescribed Depot Lupron that had to be administered as a shot. What it did was put me, at 20 years old, through an intense and immediate state of menopause, hot flashes and all. My mom would send me "going through menopause together" cards to keep some humor to the situation, but it was a dark period in my life. I had extreme weight loss, which doesn't sound bad except I was already very thin from dancing 8-10 hours a day so I looked emaciated. I was depressed and the hot flashes would be so intense my dance director would comment as we were standing at the barre. She advised me not to share what was going on with my fellow dancers, as she didn't think they would understand what I was going through. Worst advise ever. Not only did I feel completely alone, crazy mood swings, far away from my family and support system; but my erratic behavior and extreme weight loss caused many to speculate and I had to fight rumors and whispers of drug use as the cause. The only good thing about the experience was that the pain was gone for 6 months. I even took a shot overseas while I was studying abroad and found a doctor to administer the final dose. A month to the day later I got my period and it was worse than before. It affected my ability to dance, and thus my ability to function in college. That was September 1999, and my parents called up my doctor at MSU and without hesitation set me up for another laparoscopy. I had a break in January and so I pushed through til then, not wanting to interrupt my semester.

Over the years, I began to feel I was damaged goods. That I may never find a partner to stand by my side and go through so much; with the possibility of being childless. I accepted that adoption may be my only chance at being a mother and often fantasized of adopting a child in my (late) 30's, dancing on Broadway, no man needed. I became reckless and put a wall up sky high. I didn't let anyone in, and when I started caring for someone a switch would go off and I would destroy whatever relationship I built.

Surgery Number 2 was a success and seeing as the protocol of continuous birth control worked before, we did the same. If I needed medication he trusted me and gave me what I needed, over the phone. Even being so far away from my doctor I knew I had his respect, kindness, and empathy. I was 27 when the pain became too much to function normally again. I had just started dating my now husband when I was scheduled for a 3rd surgery. He came with me even though we had only been dating a few months; he sat in with my parents after surgery to hear what they found. The doctor showed him pictures of my ovaries and the endo spots. I was knocked out at the time otherwise I would have spared him that. When that didn't scare him off, I knew he was a keeper. He took it in stride and stood by me through the recovery and every moment since.

Once we were serious about our future and starting a family I knew I needed to find a doctor in Chicago who could guide me into fertility treatments even though we were not ready yet. When I moved to Chicago from New York I went through several of the type I described above before I found my next great doctor. My first appointment with him lasted over 2 hours. He wanted to hear it all, from the beginning to fully understand my journey through this disease. Such a change from what I had become accustomed to and without another thought I knew he was our guy. I was getting close to my ticking time bomb of 30 given to me at 15 and I didn't realize until then how much I wanted a child of my own. My fertility trials will have to be another post but needless to say he was there for me much like my doctors in Michigan. It was such a relief to know that I had an ally once again.

At 29 we went through several bouts of fertility treatments before we rested on IVF. Much to our delight we were pregnant, with twins! I will never forget that moment of running into our garage and leaping into Christian's arms. One of the happiest moments of my life. Since then we were blessed with another beautiful girl and I have had minimal pain. I am so lucky. I know so many women that have not had the success of pain management that is crucial with this disease or been able to have children because of it. If it hadn't been for my parents tenacity to find answers, or the doctors I was lucky enough to find; who gave me care without judgement, treatment without condescension, and support with compassion; I know my story would be very different.

At 35, my pain is back. So in response I began looking for another doctor that could guide me in Cleveland and help me get to 40 without a total hysterectomy or at the very least help me transition into that realm if necessary, I did not find that in this guy. Many doctors don't want us, as endo patients require time and care, other doctors have blinders on. As frustrating as it is to come across people like this, I know that for as many of these types that exist, there are many that understand the struggle. I will keep searching for my next great physician.

My take away is this, not much has changed in the last 20 years. You know your child, if something's not right; fight until you get answers. Trust their feelings and please be their advocate. And for the women out there who have been told the things I have been and worse, I'm sorry. The emotional, mental, and physical demands of this disease are difficult enough without an arrogant, judgmental, condescending doctor perpetuating a close-minded belief. Keep searching for the diamond in the rough... they are out there and you need an ally.

Thursday, February 6, 2014

Thank You My Mama!

As a newer mom and with 3 kids under the age of 5, I am constantly bombarded with thoughts of my mother and things that often don't get clarity until you experience them yourselves. A list of a few thank you's to you, my mama.

1. Thank you for always believing in me. I see first hand how not having supportive parents can damage a person. I have always believed if I work hard, I can do or be anything I want. Even through my bitter phase and rediscovering my passions; the hope that when I did decide on the next career move I could do it was always there because of you. Now that I have a goal I don't hesitate to believe in our vision. That is because of you and dad. Realities are there and the risk may be great but that never stopped you from believing in me and it won't stop me from believing in my family, their talent, and dreams.

2. Thank you for the 3 day rule, no more than 3 days between phone calls. When I left at 18 to go live my dream in NYC you created this rule. How hard this must have been for you. When I inevitably got caught up in my life and forgot to call, it must have been torture to wait 3 days before calling and saying "Hey! Did you forget our rule?!?!!?" You must have not only missed me but I'm sure there was a level of I need to know you are ok in that big bad city. How you must have worried constantly for my safety. I am also thankful because it kept me grounded and connected to you and even with the distance we remained close. Our friendship built a foundation for the adult version of me to be even closer to you. And thank you for listening to the endless drama of a young person, with interest and clarity. I also always loved when the three of us would chat, like it was second nature to be on the phone with 2 other people, but it always flowed so easily. I miss those conversations but am thankful you are still on the other end listening.

3. I remember one time (I'm sure there were more but not many) that you let your frustration show. I was about 7 or 8 years old and we were up at Camp Grayling visiting dad and Ted at boot camp. On a potty break, I insisted on going in the tiny stall with you. You called me obnoxious, and I remember being taken aback by it. Mainly because you never said things like this to me and at the time I remember feeling ashamed that I did something wrong. In the next moment though we went about the trip and never spoke of it again. You also were the same mom before you said it as afterwards. What it taught me is that your love is unconditional. That you can be frustrated or annoyed and a minute later back to happy. Moods will change, but love never will. There must be some karma to it because I don't think I've used the restroom alone in 4 years, and it can be frustrating. I get it, I'm sorry :) I don't know how you kept your cool so much of the time, thank you.

4. If I've never said so before thank you for making me a priority in your life and showing me what kind of mother I want to be.

5. Thank you for committing to being  my chauffeur all those years and following my dance studio as it bounced around sometimes driving 45 minutes each way. You showed me that dedication is worth the sacrifices it takes to accomplish a dream.

6. Thank you for making me balance your check book. It used to be so upsetting to me because I knew full force what my dancing career was costing you. But it also made me grateful and realize what it took to pursue a passion. I know you didn't do it to make me feel bad, you did it to teach me about money, how to manage it and the value of a budget. I got it and still love doing the books.

7. Thank you for making me clothes and dresses and costumes. I always felt like a princess in your pieces and so incredibly lucky to have such a talented mother. Thank you for all the beautiful things you have made my children. I feel your love in the things you have made and I know that they do too.

8. Thank you for dancing in the Nutcracker with me. I loved being on stage with you and backstage and rehearsals. Some of my favorite childhood memories you were apart of. Plus a shout out to dad for never missing a performance. I think he set the record for number of volunteer ushering hours he put in :)

9. Thank you for being strong enough to let me get in that cab at 18 in NYC and drive away from you and dad for the first time. I looked back through the rear window and saw you in dad's arms. It must have been one of the hardest moments of your life and as excited as I was to start my adventure in the big apple, part of me never wanted to leave you side. I was strong enough to go because you were strong enough to let me.

10. Thank you crying every time you left New York or I left Michigan. It reminded me that I was out there for a purpose. You and dad were my backbone and my strength; to stay as grounded and as focused as I could be. I also learned that strength and tears are not so far apart. You can be strong and still show sadness. I also never doubted how much I was loved.

11. Thank you for carrying me for over 10 months and raising me. You still worry about us first, putting yourself last every time.

12. You cared about nutrition, and sugar intake, and healthy habits before they were trendy. I just wished I would have embraced it more when I was younger.

13. Thank you for never giving me the answers, but gently pointing out all the paths in front of me. Always allowing me to determine the correct road to take. You are my beacon of light and I am a stronger woman because you are my mother.

14. Thank you for not losing your mind hearing Mama!!! 15 times before I would find you in the house every time I needed something; big or small, or just needed to know where you were. As a mama myself now I see how incredibly irritating that is and I scream in my head (and sometimes not in my head) to make it stop.I am not as good as you, but I hope to be someday. 

15. Thank you for showing me what strength really is. You have fought this disease as a warrior and I will forever be in awe of you. 

16. You wake every day and struggle to accomplish daily tasks that so many take for granted. No matter what is taken from you, you face it head on and as scary as it is you are still protecting all of us before worrying about yourself.  You are a caregiver by nature and it is a beautiful part of you.Through it all, you have remained positive and determined to fight. It must be strange to be the one who needs the care, but it's ok. It's our turn. And it's ok to focus on you now, and do what's right for you. We will support and rally around you like you have done for each of us time and again. You are not alone.

17. You are never short of a smile, a wink, a kiss, a hug, and an I love you everyday. It truly is enough. I feel all of your love in those tiny expressions. 

18. I am so blessed to be your daughter and have such an amazing role model that I continue to learn from everyday. You are never far from my thoughts, I am constantly asking myself What Would My Mama Do? And I have a feeling I will be asking myself that for a long time to come. Somehow even in a thought you can ground me and guide me in the right direction. 

I love you My Mama. Thank you for all this and so much more I don't have words for.