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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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

 

A Little Anxiety Goes A Long Way

Guilt and failure. These are both two emotions that I struggle with on a daily basis. They often lead to major cases of anxiety, which are often self-induced. If I were to tell you today, I currently take 10 pills to manage my anxiety from my fear of failure and sometimes my guilt of living. Don’t get me wrong, I’m not going to harm myself or anything (and some of them double as migraine medication), but I go through periods of time where my anxiety gets so high from just living my daily life; things like spending $5 on a coffee, planning a vacation, or buying a new home, that I can hardly breathe. That I get chest pains. That I get nauseated. It’s awful.

For a while, I tried to hide these emotions and it was amazing how quickly they boiled over into my work, my marriage and my family. I didn’t know how to be myself anymore, or even remember who she was. I tried talk therapy and got nowhere, so needless to say…and say without shame, I’m totally medicated and I’m okay with that.

Since the time Steffan and I told our family and close friends about our inability to have our own children, it’s been an emotional roller coaster. The support we get and the guilt we feel is never-ending. We struggle all of the time with this delicate balancing act of how to save the mega bucks it takes for adoption, and still trying to have the semblance of a life that is one that looks like we’re actually living.

If we spent anything extra we both felt guilty. We lived in a modest ranch house that we had been in for almost five years, and were busting out of the seams, and knew we needed more room. As we started to do our research into the plethora of adoption outlets, we learned a lot about the cost; one thing we learned was that any money invested into home studies, etc. is lost if you move at any point during the process. So hypothetically, if we invested $10,000 and then decided it would behoove us to live in a bigger, “family” home, we could stand to lose all of that money and have to start over from square one. That led to a major life call, one that I was excited and nervous about at the same time…buying a bigger house.

Despite the fact that we knew it was the smart decision in the long run: get the family house and then the family, we were nervous about how that order of events would go over with people. In all actuality, we were nervous about how it would go over with us, I mean, we REALLY wanted the family, so how could we justify spending the money on the house before the child? I guess it shouldn’t matter; it’s our money, but it all goes back to what I said at the beginning: guilt and failure.

For a while, we thought every spare dime we had, needed to go to an adoption fund. We are at the point in our lives (early 30s) where if we want something, we can go out and buy it. We don’t Christmas presents or birthday presents anymore. We asked our families to just donate money to an adoption fund that we set up separately from our regular checking or savings. It pained us to think that our family or friends, thought the money they gave us was spent on something else. It wasn’t. I feel like the world is silently judging my choices and it eats away at me. I know it’s all in my head. I know we have the support of our friends and family, but each day we get older, and the thing we want most gets a little further out of reach.

Support is key in this type of event. There have been situations where unknowingly, or not meaningfully, people have insinuated we’re selfish for taking a trip or buying something expensive. What people don’t realize is we work with a financial planner constantly to see what our best options are to make sure we save money and live life.

I guess what it all comes down to is this: please be understanding that every couple who wants to adopt, does so with the passion of a thousand burning suns in their hearts, but we all get to a point where, if that’s all we focused on, we would fall apart in the most gut-wrenching sense of the word. We do all we can to keep our sanity while we endure failed fertility treatments, pregnant friends and family, and the ungodly cost of saving.

And there is always something new around the corner to keep you on your toes. For Steffan and I, the house we bought came smack dab with a beautiful swing set, complete with two slides, a climbing wall, sand box, and two swings. It stares at me while I do the dishes or play with my dogs. We’ve talked about selling it and getting rid of the constant reminder that who knows how far out of reach this dream of ours is, but then again, maybe having it will be a motivating factor to work harder than ever to get what we want.

~Trenae

The Diagnosis

After the initial shock of being told there are zero viable sperm multiple times now me being the way I’m wired start to do research on how and why. It’s nothing against doctors but I have always felt like you have to first be your own advocate. I mean lets face it the way health care is forcing them to treat now a days they don’t really have the time that is truly needed to uncover every issue with every patient. Our fertility doctor recommends me to see a reproductive urologist to see what the underlying issue is. It was at that moment it dawns on…I know what’s wrong. I have known for ten years now whats wrong. I was 17 years old and a junior in high school. I went to my parents and said I am having some discomfort down in the nether region. Because you know every teenage boy wants to go have that conversation “Hey Mom and Dad my junk hurts and I don’t know why”. My parents were equally as worried as I was. I remember my mom asking me what it felt like? Do I do self exams? When did this start? They set up the appointment for me at my then doctors office to try and get some answers. Remember I am 17 at this time when you aren’t fully comfortable with your body and don’t want people checking around. My doctor says to me okay Steffan “Drop them.” These words never bothered me before when I was having physicals but this time just felt different. He examines me and says “Hmmm everything feels okay, but I would like to send you for a sonogram just to be sure.” WHATTT?! It sounds okay but hey friend I’m sending you to have some tests done because it’s not really okay is what that truly means. I remember leaving his office that day convinced I was going to be diagnosed with testicular cancer because that’s just the level of crazy I bring folks (always worse case scenario). I called my girlfriend at the time and tell her the news and I remember going over to her house and sitting on the couch sobbing thinking this might be it for me. I was really dramatic in high school, and to some extent still have that with me today. I went in for the sonogram at the hospital early in the morning. My Mom drove me and said “I’ll be here the whole time waiting don’t worry it’ll be okay.” That put me at ease a little but I still had some serious anxiety. I hear them say “Steffan Webster” and my stomach instantly turns into a knot. The nurse tells me to remove all of my clothes and to place them in the locker with the provided key. I undress and put on this awful looking blue gown and sit in a private room with two other gentlemen in blue gowns. At this very moment I felt trapped like I was in jail because I remember the one guy saying to me “what are you in for? You’re really young to be here.” Finally before I can answer him I hear again “Steffan Webster.” I could have hugged that nurse because telling my parents was hard enough now I have to tell some stranger about the nether region, umm no thanks! I go in and they place me on a table and tell me to remove my boxers and the technician will be in shortly. She comes in and says this will only take a couple minutes and begins to put the warm jelly down there and moves the tool around in order to get multiple different angles. She tells me all done and that I can go get dressed and my doctor will be in contact shortly with the results. “Shortly” folks was three weeks. Three weeks that felt like an eternity to find out if I was going to be okay or not. The phone rings at my parents house and  I answer; It’s the doctors office calling to tell me my results are in and they would like me to come in the next day to discuss them. Well that’s it I’m dying I’m convinced at that point it’s the end. I go in the next day and My doctor comes back in the room “good news Steffan everything is fine, you just have epididymitis.” Lovely!! what is that? is it curable? I asked. He chuckled a little and said yes all it is is an inflammation of the coiled tube (epididymis) at the back of the testicle that stores and carries sperm. A little antibiotic will take care of it……or so he thought. Weeks go by and the pain doesn’t change and he tells me it’s normal to have discomfort it just takes time. Finally after about a year I just get used to the discomfort and don’t really notice it as much. Ten years pass, yea that’s right I lived with that discomfort for tens years because I knew my doctor would know whats best right?! Wrong big Wrong like life changing I’m sorry It’s to late now you cant have kids wrong. I make an appointment at the urologist and start again to do my research; if it’s not epididymitis what else could it be. I find a bunch of stuff about varicoceles and what it can do to fertility. I got to the Urologist that the fertility doctor recommends and I say to her “I think I have a varicocele on my  left testes.” I go back into one of her exam rooms and I hear her say the infamous words “Drop them” as soon as I pulled down my pants she sees the varicocele with her naked eye. She exams me and says yep there’s definitely a large one on the left but you also have one on the right. So no ladies and gentlemen I didn’t have epididymitis ten years ago it was the start of the varicocele. For those of you that don’t know what that is the simplest way I can explain it is that its a vein that stretches too much and sort of balloons allowing blood to pool in one spot. When it pools in the scrotum of a male it increases the temperature to a point that it kills off all sperm production. I remember feeling terrible at that moment as though the case was closed. The multiple semen analysis weren’t it for me because I still had hope that maybe one little guy would get through, but no I am now a diagnosed infertile male whose book has been closed on being a dad. My doctor wanted to talk about the options I have because surprisingly enough I still had them, but I was in no mood my world had just come crashing down on me. She rescheduled me for another appointment to figure out the next steps……..

-Steffan