Pain, Pain Go Away

So it’s been about nine months since the chronic pain started. I saw at least a handful of doctors to help me figure out what was wrong; the first was a surgeon who increased the pain significantly. The second was a chronic pain specialist who, when I told him my symptoms and my quality of life, dismissed me without bothering to learn my story. Although he was kind enough to tell me my first surgery sterilized me. *sigh* Again, the pain never ended, it only got worse. It wasn’t until I went to a third doctor, another surgeon who has more accolades than I can count, decided a partial hysterectomy was in my best option. At 32, that word and the menopause to follow, were very scary things. At the time, however, I would do anything, and I mean ANYTHING to get rid of the pain, even if it meant officially, no children of my own. We scheduled the hysterectomy for December 27, 2016 (Merry Christmas!).

The day came, my husband and my mom were there with me at the hospital to support me and take care of my mental and physical well-being after the surgery. Everything during the surgery went as well as it could have gone. The surgeon needed to take much more than he planned, however. He originally planned to only take my uterus, but took that plus my right ovary, Fallopian tube, and cervix due to the endometriosis. Currently I am left with one ovary.

After the surgery, the pain seemed to continue, and not in a surgical manner. It was as if every time I moved, my insides burned and felt like they were being stabbed. Something didn’t feel right. I “recovered” and returned to work for a little less than two weeks before I couldn’t teach. I remember my last day: I ran our television studio from the floor in the fetal position and taught my first period journalism class from my desk with a heating pad on. My kids wouldn’t even let me stand; they are a wonderful, caring and a compassionate group of young scholars and I am blessed to have them. They watched me cry as I helped them with the paper and showed such strength for me.

During second period, a colleague of mine (one who taught my husband), saw me in excruciating pain and crying at my desk in our common planning area. Everyone suggested we go to our local hospital’s ER, but time and time again, I’ve been dismissed because they couldn’t see anything on their tests. To be frank, they considered me a drug seeker. My colleauge immediately called our administrators and my husband and I went directly to Mercy hospital in Baltimore instead.

At first they couldn’t figure out what was wrong and said they would send me home with pain pills. The entire visit took less than fifteen minutes. It might have been the pain talking but I finally got up the gumption to say, “If you don’t know what’s wrong with me, admit me. If you send me home with pain pills, you’ll see me again in a week.” My doctor said okay and I was admitted that day. Let me preface this by saying my surgeon is a wonderful man who is kind, caring and compassionate. He listened to my plea for help and ran tests while I was admitted. No one could see anything on either the CT scan or the sonogram and the answer again was pain pills and home. I refused his team’s suggestion and said I wasn’t leaving until he opened me up, looked around and everyone stopped relying on pictures to tell me “nothing was wrong”. Again, pain speaks volumes for me and my courage and my doctor agreed. He even did the surgery on a Sunday morning.

The surgery, again, (3 times in 9 months), was successful. I woke up to my husband telling me adhesions (scar tissue) had built up in my belly and was making my organs stick to my abdomen wall. Basically, every time I moved, I pulled organs that are not designed to move. After this surgery, of which I am still recovering, I am FINALLY chronic pain free! I feel like my old self, not like the shell of a person trying to survive.

If I could have you take away one thing from this post, only one, it would be to be your own advocate. You know your body better than anyone or any picture could ever show. Had I not been my own advocate and basically demanded surgery, I would not be on the road to full recovery!

I am grateful and blessed to have had a phenomenal surgeon, good friends and family check up on me and take care of me, even in the smallest of ways. They have sent cards and small gifts, food, flowers, and things to help me stay busy while I’m resting for one month. Needless to say, I’m getting very good at coloring and hand lettering calligraphy! Two of my cousins even sent me special gifts: one sent me a yellow bracelet, as yellow is the color of endometriosis awareness and the other sent me healing crystals which I keep by my bed to help comfort me.

My husband, during this final surgery, has been such a great support system. He has made sure I have everything I need, while sacrificing his own needs at times. I cannot tell you the love I have for this man!

I’ll also say that animals seem to have a keen sense of pain and healing. Our four dogs have been very attentive to me and don’t want to leave my side. They are loyal and they love unconditionally.

Together, now, it finally feels like we can move on with the adoption journey. We are both working side jobs to help raise the astronomical amount of money we need to have a child of our own. I teach to children in China online and he has a side business called WoodBuryDesigns.  He also does hand lettering and wood burning that started as a hobby and now we are using the money from both of our side jobs to make it possible for us to adopt our waiting Webster.

Now that the pain is gone from my insides, there is room for more love for a family and fun! Thank you to everyone for your support during this difficult time. I love and appreciate all of you and your gestures, big and small! They mean the world.

Next stop, adoption! 🙂 I can’t wait to meet our baby.

~Trenae

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Just call me Sisyphus…

It’s my third day that I’m laying in bed, tethered to a heating pad because I can barely stand up long enough to shower. I need help from my husband to get dressed and then back into bed. For three days in a row, I’ve needed the support of my colleagues to help me plan and execute lessons for my kids. I am in pain. Excruciating pain that no one can seem to figure out definitively. I feel such guilt that I have made my husband Atlas and now he is carrying the weight of my world on his shoulders. He leaves for work every day worried sick about me because I can’t stop crying. I don’t want this view of me to be the last one he sees of me before he heads out the door, but I don’t know how to stop myself.

Steffan and I voted on Tuesday and then made our way to Annapolis to see the specialist of whom my gynecologist recommended. We went under the impression of determining a long-term pain management plan, as that is part of his title, “pelvic pain specialist”, and with a list of questions about the looming hysterectomy in my future. I’m 32 and the idea of having organs removed from my body scared me greatly…especially because in my eyes, these are the ones that make me a woman and now the thought of us ever being able to have a child is gone, aside from adoption. I am happy with that plan for bringing a child into our family, I’m just wished we weren’t forced into that position. Rational or not, it’s not like they can be replaced, and the thought of needed hormone replacement therapy at my age is not ideal in my small world view. *Side note: this was only our third visit to this specialist, but in our eyes he showed his true colors more and more each time.

We asked our questions about everything with this surgery and everything leading up to it: how this would impact my hormones, my libido, my pain and how to manage it until I’m ready, and recovery time. He had no concrete answers to any questions. It was all circular in nature; for example: when I asked about recovery time: he said, “Well that all depends on you. I mean you could be dancing in two days or it could take 4-6 weeks.” We were both taken aback by that answer, as it’s quite a wide range…and I’m a teacher who needs to plan accordingly to use my sick days. He also said it depended on my job. I said, “Well I’m a teacher, so I’m on my feet all day and moving around to help kids, and up and down by desks to work with kids, and up and down stairs to go to the office, etc.” Basically, I never sit. He responded with, “Yeah, but it’s not like you’re a firefighter or anything.” I was speechless. I just stared and looked at my husband. At that point, he knew I was panicking inside. I didn’t know what to ask since he just demeaned my entire profession.

Steffan asked about long-term pain management and he said, “We’re not doing anything for that. Is that why you thought you were here?” I said “Yes! That’s the whole reason we made the appointment!” How am I supposed to live tethered to my bed for the next six months without pain management? His only suggestion was a drug called Lupron. In all my husband’s research, he has found out so much about this drug that is utterly terrible. The basic premise is to induce menopause until I actually experience it with the surgery. This drug was originally designed for men with prostate cancer and failed. My doctor loudly refuted my husband and said that’s never been the case, despite it being able to cause diabetes, convulsions, epilepsy, impotence and heart problems (directly from Lupron.com). For women, in the short-term, it can cause convulsions, headaches, bone-thinning, fluid retention, heart or kidney problems (again, from their site). Sounds like a great drug that I’m dying to take. I asked what other options he had for me, since at our first visit he said, “he lived out of the box”. He said that was it. I could opt for the 1 month injection or the 3 month one.

So let’s recap: drive 1.5 hours to be demeaned, yelled at, and left with no options for any immediate relief. I got in the car and just started crying.

When I got home, I wallowed for an entire night. We got home at 5 pm-ish and I went right to bed. I am feeling abandoned by the medical system.

I couldn’t stand the thought of going back to that doctor…I called an got a referral to a surgeon in Baltimore with whom I’ve had surgery before. I called the Annapolis office and had all of my records transferred. I am starting all over again and it feels utterly like Sisyphus pushing his boulder up the mountain one more time. How am I going to do this?

Yesterday, I finally managed to make it to my family doctor who was willing to get me medicine until I can get to Mercy and see the compassionate specialist I’ve seen before. Every time I left his office, he would hug me and tell me it will be okay. He said, in 2012, the last time I saw him, he had such respect for teachers…polar opposite of what I’ve been enduring.

I’ve had a lot of people tell me the pain is psychosomatic…it’s mainly in my head and my stress is making it worse. I know what my pain is. Because of this part of our journey, I’m losing hope in the medical system. For those of you Golden Girl fanatics like me…yes, I love them. There is one episode where Dorothy has to travel across the country and see a plethora of doctors because no one can figure out what’s wrong with her. She knows she’s sick, her mother and friends know she’s sick, but because the doctors can’t see it, it must not be there. I feel like Dorothy. Turns out she did have something wrong with her, but it took a little empathy and compassion and someone who is listening to hear, not to respond to figure it out. I’m still waiting for that person.

In the meantime, I’ll lay here with my heating pad, my mini-dachshund, Walter; my snoring Newfoundland, Frank and watch endless episodes of Parks and Rec. I am forever grateful to my loving husband who stands by my side and makes sure I am taken care of, even when I feel like I can’t do it anymore. I am grateful to my friends and colleagues who send thoughtful messages, help me with plans, and even take over my classes. You’ll never know how much it means to me. I am thankful to my in-laws and grandparents, who have checked up on me constantly. I am thankful to my mom, who even though she lives 10 hours away, offered to drive down today, spend basically one day with me and then drive home, because she too is a teacher and needs to be in school on Monday.

I will get better. Could someone tell me when? Please…

~Trenae

A Tale of Two Fears…Well Maybe a Few More…

It’s 12:30 AM and I’ve been up for about an hour now, tossing and turning. You see, officially today, since the clock has passed midnight, Steffan and I have our multitude of doctors appointments to figure out 1. my medical conditions as my pain has only gotten worse since an oblation surgery I had in August to which my surgeon has no reasoning for, and 2. our plan with possibly moving forward with the implantation of a gifted embryo if I’m healthy enough to carry it.

Since school started this year, I’ve been dealing with pain every day. I’m doing my best to manage it, but even two “post-op” surgical appointments and a trip to the ER haven’t given me any relief. I’ve stopped eating dinner, because I can’t keep it down, and I got to the point yesterday where I text my husband in the middle of the day (10:30 AM) because I didn’t even go to lunch because I sat down from the pain and couldn’t get up again; I was afraid I was going to have to leave school. At 11, I put my happy face back on for my kids, but inside, I was dying.

Currently I’m sitting in my living room, heating pad on, surrounded by my two “large and in charge” furry protectors…both of whom are sound asleep and snoring. Jerks. The mini-furry protector is sound asleep upstairs…probably asleep on my side of the bed…again, jerk.

All I can say is, God love my husband. While I was at school yesterday, about to fall down, he was feverishly doing research on the specialist I am to see tomorrow, the possibilities of my disease and what it may actually be instead. For years, I’ve been treated for endometriosis, a disease that typically affects the ovaries, causes pain and often infertility…all things I’ve gone through since before college (call my mom, she can tell you). I’ve had surgery for this three times since college and yet, no relief. I go through stages where I’m ready to just throw in the towel and give up. After my first surgery (right after college), I was engaged to a very different man, who told me “I just wasn’t a good breeder”. Needless to say that didn’t work out. And thank God, otherwise I would have never met the man who continuously fights for me day in and day out. Steffan is the one who has done the research on not endometriosis, but something called adenomyosis. It’s similar to endo, but much more difficult to find unless you are specialized in looking for it; it isn’t even listed on Women’sHealth.gov — go figure. But don’t worry, anorexia and acne are…because that’s what we suffer from. Right ladies? He looked at the symptoms and he looked at me and the two matched more fittingly.

I guess what I’m trying to say in my tired, yet insomniatic state, is that I’m so happy to have someone in my corner who will fight for me when I’m afraid and ready to give up. It’s hard to fight when your tired and in pain. It’s also hard to fight when everyone you’ve asked for help, can’t give you any answers. On one hand, I’m hoping tomorrow I get an answer because then I’ll finally be able to get the right treatment. On the other hand, I’m scared I’ll be let down again by yet another doctor who still doesn’t know what’s wrong or where this pain is coming from. I know they call it “practicing” medicine, but could I stop being the pin cushion for a little while? It’s sucks when you can’t sneeze, cough, twist, or do other daily activities, like, I don’t know, teach your students, without wanting to double over in pain. I’m 32 and I just want to be healthy.

And to put this blog to bed…hopefully metaphorically and literally, there’s the embryo in the mix. That appointment is tomorrow too, as if one doctor a day isn’t enough…the what if game is spinning through my head at a whirlwind pace. What if he says I can’t carry because of these conditions? What if I’ve missed my window to carry a child? I go back and forth with these questions; tell myself I’m okay if that’s the case, then fall apart because I can’t do what comes so easily to others.

Forgive me if this is a sappy post. I’m really nervous. We have to be in Annapolis in seven hours and I don’t know if I’ll be able to sleep a wink tonight. Guess it’s Netflix for me tonight…and time to turn the heating pad up to full blast. G’night y’all. Wish us luck.

~Trenae

 

The Double-Edged Sword

I do a lot of thinking at my school desk. For those of you who know me, or are teachers yourselves, when the school day ends, you kind of sit there blankly for a few minutes in a stare trying to reflect from the highs and lows of the day. Your desk is your Zen space; the place where everything wrong can be righted, only sometimes certain wrongs cannot be righted.

I am a high school English teacher. Approximately 100 students come through my classroom on a daily basis every year. It was about my fifth year of teaching when Steffan and I started this journey of doctors’ appointments, infertility tests, peeing in cups, internal sonograms (oh-so-horrible), and just bad news after bad news. (Mind you, most of these tests and such were an hour and a half away from our home.) It was at that time that I began to notice my students in a new light; pregnant ones or ones who talked about being fathers. Even as I write this, tears start to well up in my eyes. I love each and every one of my students…even the pain in the tookus ones, because they are all special and unique and make me laugh at some point in time. I feel, and felt, a sense of guilt because I was angry with them; they could do something at such a young age that I will never be able to experience.  As the year passed, I would watch their bellies get a little bigger, and a little bigger. Some would even take maternity leave from school, for which I would have to send work home. I would be lucky if I got any of it back. I would be even luckier if I got them back. I would always imagine what the feelings they were having were like: What did it feel like to carry? To have a small kick in my belly in the middle of introductory  prepositional phrases. Was it wonderful? Would I completely lose my train of thought and start teaching a2 + b2 = c2? I have no idea. All I know is, sometimes it took a lot of hard work to not stare, because I was jealous, jealous of the 15-16 year old and her accomplishments. But I was also terrified for her, justified or not, watching a child carrying a child is a scary sight. They have so many choices ahead of them and 90 percent of the time, I never know what they are planning to do: get rid of it, give it to family, adopt the child out, or keep it and try to make the best of the situation. In my mind I’m screaming: “GIVE THE BABY TO ME AND MY HUSBAND! WE’D BE GREAT PARENTS!” But of course to say that aloud lends to the impression that you’re nuts…and let’s face it, after a day with 100 kids, sometimes you are. So I kept my mouth shut unless they would come to me and then I would just listen, quietly, without judgment.

In my mind I fight this double-edged sword. I would always think about what my husband and I could give a child, and it’s not just about the material items in life; although when you compare the lives of two working 30-somethings against teen moms, the material items have a tendency to tip the scale in one direction. We are a couple who are filled with love, devotion toward one another, three fur-siblings, extended family and friends who want nothing more than to help us shower a baby with affection and love. The other side of that sword is not knowing if they can do exactly what I just said we could do. Perhaps they can and I have no idea. Perhaps they can do it better than me. I have no clue. As I’ve often heard students in the hall say, “you don’t know my life,” well in this case I definitely don’t.

Classes inevitably always ask my age, if I’m married, and of course, if I have kids. I tell them the truth; they deserve it. When they hear we can’t have kids and my husband and are going to adopt, it never ceases to amaze me their reactions: nothing but pure empathy. This year, one “boy” – it’s hard to use that term as he towered over me by like a foot and a half – asked if we had a preference on gender, race, etc. I told him no, as long as the baby had 10 fingers and 10 toes, we’d be happy; heck at this point nine fingers and nine toes would make us happy! Beggars can’t be choosy. I get the “awes” from them. They tell me what a great mom I would be and they tell me I can adopt them (some which I would), and for a moment I feel better.

When they’re gone for the day, my sadness returns sometimes. I sit down at my desk and look through my stack of grading, planning and unfinished “to-dos” and I think that while I might not have a baby yet… I definitely have kids and I still have a lot of work to do for them; even if it isn’t dinner or a bath.