Riding the Medical Mystery Tour is SO MUCH less fun without the Beatles.
This is her story:
Oh how I loathe going to the doctor’s office. Unless I’m loaded up with snot, like I am today. When I’m loaded up with snot, I can get something to help the snot go away. When I tell the doctor that all the snot in my head is drowning my brain, he knows what to do to help.
Any other time I go to the doctor? Well… That’s an entirely different story all together.
Over the last six or seven years, I’ve lived with non-stop pain in the lower right quadrant of my abdomen. I’ve been poked, prodded and made to drink some of the nastiest shit in creation. I’ve had multiple exploratory surgeries and damned near every narcotic known to man. I’ve received FOUR different diagnoses for that could contribute to my chronic pain (PCOS, Endometriosis, Diverticulosis and Interstitial Cystitis), but I’ve never been given any kind of permanent clue as to what can be done to stop the pain. I’ve been told that I can’t have such and such treatment for one diagnosis cuzz I’m being treated for another diagnosis. SO.MANY.YEARS. of never-ending bullshit have pretty much jaded me against much of the medical community.
Imagine my dismay to realize that it was going to start all over again.
I’ve been constantly dizzy since mid-January. Interestingly enough, it started about a week after I turned 30. I’ve had the continuous feeling that I’m on a boat and not in the “I’m on a boat mother fucker! ON A BOAT!” kind of way. (Which sucks cuzz I used to like being on boats, mother fucker. ) Went to the doctor, who poked and prodded and couldn’t figure out a reason for the feeling, so he gave me some anti-dizzy shit and sent me on my way.
The day before Valentine’s Day, I decided to add passing out to the mix.
After many different tests, I’ve been diagnosed with Orthostatic Hypostension, which means that when I change positions (laying to sitting, sitting to standing), my blood pressure bottoms out and I wake up on the ground with no clue what happened. (Well, I don’t pass out every single time, but the potential is there.) As for the dizziness that never goes away? No clue.
I’ve had MRIs, CAT scans, heart tests… All to no avail. I get to trek on down to the University of Michigan at the end of October to see if maybe they can figure out what’s going on. So far, the only thing I’ve been able to find that fits all my symptoms has been MdDS, which apparently is very rare and can last anywhere from a few days to decades. Color me fucking excited. o_O (And just to clarify, I hadn’t been on any long trips in planes, cars or anything else, but I was INCREDIBLY stressed out due to finding out some things about my boyfriend/fiance that damned near destroyed me.)
Oh! But wait! It seems my body decided to throw another curve ball into the mix!
During all my testing to see why I’m always in pain, I was told that I’d never be able to have another child. My kidling is awesome, so while I hated hearing it, I figured that I’d at least been able to have one child, so I was lucky. Any time I was asked if I was gonna have another one, I’d always say I didn’t want anymore.
To me, it was easier to deal with the judgment of being one of those mothers than to have to deal with the looks of pity and the empty condolences from people who never had to deal with the reality of not being able to choose whether or not they could get pregnant. After six years of being told it would never happen and having all kinds of unprotected sexing with no babies, I had pretty much come to terms with it.
Except in June, I found out that I managed to get myself knocked up.
I had a miscarriage scare in my seventh week, but things seem to be moving along well now (17 weeks). The thing that sucks is that being pregnant seems to lower my blood pressure even more, which presents a challenge.
I no longer leave the house by myself. I haven’t been able to drive since February. I have to walk with a cane, so I don’t appear to be drunk from all the stumbling around I do when I walk. I have to rely on anyone who might be willing to help me get to my doctor’s appointments and hope against hope that the offer of help isn’t just an empty promise. I lost my job cuzz I can’t work without someone in the same building, just in case I happen to fall or pass out. I don’t see any of my friends for months at a time.
And though I’ll probably never say it out loud, I’m fucking depressed as hell over this entire fucking situation. (Except for the Squishy – that’s what I’m calling the baby – THAT has me over the moon.)
I feel as if I have no one I can talk to. Whenever I go to my friends or family, I can see them tune out. I’m sure they want to be there for me or whatever, but they aren’t dealing with this shit on a daily basis. They just don’t understand and I don’t expect them to.
So, I sit in my house day after day, wondering if I’m ever going to feel better. Wondering how the fuck I’m gonna manage to take care of a baby when I can hardly keep myself from walking into the wall. Wondering if I’m ever going to receive a diagnosis cuzz I really want to know what the fuck is going on.
I’m always wondering if there’s someone else out there who might be going through the same thing. Not necessarily the same symptoms, but just the whole not knowing thing. And then I wonder if I sound like a whiny bitch when I carry on about what I’m dealing with. I don’t address this on my blog, for the most part. While I have written about it a couple of times, I try not to focus on it cuzz I don’t want to appear as whiny or like I’m seeking sympathy or something. I hate to be pitied and I’m really trying to avoid seeing anyone feeling sorry for me, ya know?
Thanks for giving me a place to rant and rave. I don’t feel like I’m gonna told be told to suck it up or some such shit, though now that I’ve said that I am TOTALLY expecting to get some comments like that.
Is there anyone else who feels like they’re taking part in The Medical Mystery Tour?
We spent the weekend away in Seattle, our first real weekend away from Kellen. Although we missed him, it didn’t hurt to have a weekend away from the constant demanding needs of another human. The first night we were out to a nice dinner on the water, and another family came in with a whiny toddler, and I wanted to tell them that I had a No-toddler-within-50-feet-of-earshot rule while on vacation, but that didn’t seem fair! We have certainly caused our share of raucous at restaurants.
Our trip was mostly for my check-up with the Lyme doctor, and we decided to add on a couple days away. This was the view from our hotel room:
We watched cruise ships load and unload passengers as though it were a 24 hour cattle call. We made a mental note that if we ever went on a cruise, we’d arrive late and make sure we could afford to be a VIP.
On Friday, I had a PICC line put in. It’s a more permanent IV line that allows me to give myself daily meds that will hopefully penetrate the blood-brain barrier and kick these spirochetes to the ground. After I had it put in, I told Dan we needed to name it. When Dad was sick with cancer and we were being given a five year life expectancy (it’s been nine years thanks to a great clinical trial), we named his IV stand Freddie. Whenever it was time to walk around 4-south, one hand on the pole, the other closing his hospital gown, it gave us a momentary laugh to call for Freddie, the IV stand. I guess it personalizes medicine a little and makes it less scary or… medical.
Dan decided that we should name it Venus, the intravenous PICC line.
If you read my profile, you already know that I’m married 23 years with 2 teenagers; a daughter, almost 20 and son just turned 16. Four years ago I was diagnosed with breast cancer, went through a double masectomy, chemo, radiation and reconstruction. I was in remission up until 3 months ago when it was discovered that the breast cancer has returned, in the lining of my stomach, treatable, not curable (1% chance).
This is not to be mistaken for stomach cancer – confusing right?
Needless to say I went through the depression, anger and shock all over again. Only this time it was harder. The optimistic goal of beating it wasn’t as easy to grasp because it had already returned once.
My meds have been changed, my doctor’s visits are more frequent and the side effects more intense. Hotter flashes, sleepless nights and mood swings. I am not always the easy-going, jovial Queen that used to rule this Kingdom. No, I often become that dragon you referred to in the Bands write-up. But I allow myself to breath some fire, release some anger, then I straighten my tiara and return to my throne surrounded by my adoring and supportive family, my riches, my strength, my motivation.
I could fall in the moat tomorrow and get gobbled up by… well whatever lives in moats. I’m not going to let this Cancer defeat me and takeover my Kingdom…
I know I will have bad days but I also know that I will get through them with a little help from my army (my friends and family) …
Today was one of those bad days and then, suddenly, you appeared!
I loved you effortlessly. I was trusting, giving, and naive. I loved you before I knew your true nature. Your smile, your ease, your power put me at peace. We talked for hours about God and His goodness, Jesus and His love.
It was love at first sight. We talked and walked in the summer sun, we laughed and ran to avoid the Florida rainstorms. I thought in my heart that a man who feared God would be the man I would be with forever. Before I knew what I had done, my heart was yours. I would follow you to the ends of the earth.
Little did I know that to you I was a tool; you had always manipulated to get your way and were a seasoned abuser, skilled at stabbing and twisting at just the right moments. You said God told you to take my virginity away from me. Did He also tell you to shame me after my first time? You named me a whore, a temptress, a slut that lured you into hell, and then you pulled me close and kept me for yourself.
Did God tell you to scream at me in public any time you were trying to get your way? Did He tell you to publicly humiliate me, throw things at me, to make me bleed, to make me suffer?Did He tell you to use scripture to shame me, to make me feel less than human? Did He tell you to throw me against walls and scream at me? What did I do to you? All I gave was love …all you gave was abuse.
Before I knew it you had moved me in, you had planned my schedule. You controlled everything. I wasn’t allowed to talk to my parents, to leave you for any amount of time. I was either on the phone with you or next to you. You knew what you were doing. I was fulfilling some sort of sick fantasy of control, of dominance, and you weren’t going to let me go. You loved to see me shamed, you loved to break me down. You were convinced I was full of demons, convinced I was a slut who was dragging you down. I couldn’t stop myself from believing I was a slut.
One day, I stopped trying to make you happy. I became numb to it. I just phased out and let you do whatever you wanted. You raped me …like it was nothing. I was just lying in bed, and you forced your way on me, and did whatever you wanted to. When you got off I could see it on your face, the same look that I had had for almost a year: shame.
You only liked me when I was trying to please you, trying to love you. You liked the challenge of subduing, controlling, defeating, dominating. Now that I was numb and apathetic, the challenge was gone. You had broken my spirit. It was time for you to move on. You went to the church we attended every week, you told all our friends about what a slut I was and how you needed help escaping my clutches. People I trusted told you to break up with me. They encouraged you and tried to help you.
I was shunned. Outcast from everyone except one person, my best friend. She was the only one who had spoken up at all to me, voiced her concerns, the only one who cared.
Our relationship was still on and off. You said I was too much to resist. I had given everything to you, so I was still looking for a semblance of love and hope. I was convinced I needed to marry you.
You had taken everything from me, and I didn’t know who I was anymore. What did I even believe? What was there left to live for? Now that I was apathetic I could see everything for what it was. We had sex one last time before I went home to Texas. Afterwards, you put on your clothes, called me a whore, and told me to leave. I was empty. There was nothing left, and yet you took some more from me. You were never satisfied.
I tried to kill myself by just not getting out of bed anymore. My best friend and roommate kicked me out of bed after a few days and forced me to eat, to live. She loved me. A week later I contemplated drowning myself in the ocean. The Lord intervened on that night and it didn’t happen.
When I got home to my family and to support I was a shell of myself. I just slept during the day, but I couldn’t sleep at night. I started chain smoking. I had severe anxiety. I saw death coming for me in a shadowy figure everywhere I went. I had left real life and entered into an altered state of reality. I was consumed by fear. I often forgot what I was doing, where I was going. I had severe flashbacks and severe panic attacks.
You but you still weren’t done with me. You called me up accusing me of cheating on you. You texted me horrible things, verses in scripture condemned me to hell. You had to keep on hurting me. I had to change my number.
You wrote me a letter, and an email, both listing Bible verses about how I was a whore. I believed I was nothing because you told me so often. You used brainwashing techniques and extreme manipulation tactics to bond me to you. I was your slave for a year.
You are not a man of God. You are a psychopath, a devil, my deepest fears realized. You broke every belief I had, but in a way, I need to thank you. My relationship with God has become real. I no longer lean on religious stigma, and I no longer care for pleasing others. I only care for my God, His will, His love, His word. The God I know will never welcome abuse, will condemn a heart filled with hatred, and will cast away manipulators and evil doers.
The Lord my God heals the broken-hearted, lifts the meek in spirit, saves those who have been crushed, and redeems any who call upon Him. I may have been broken by your hands, by your words, by your deeds, but God has built me up stronger than I ever dreamed of being.
Although I struggle with forgiveness, my anger is well placed. I will always be changed by what you did to me and took from me, but I hope God changes you. If He can take emptiness and create fullness, He can change hatred into love. I will continue to heal, to be angry, to find a voice in me that needs to be heard.
Now that I have God by my side I am no longer afraid. I need to tell of the darkness turning into light. It was a miserable journey for me, but by the grace of God, I am so full I am overflowing. I am filled with love, strength, purity, and identity.
Genesis 50:20 WE ARE LIGHTS IN THE DARKNESS. WE SHINE BRIGHTER EVEN WHEN YOU TRY TO PUT US OUT. You will never take away my freedom to live abundantly.
I admitted my 10 year old son to a psychiatric hospital Wednesday night.
My son is mentally ill.
For years, I have apologized to people for who my son is. His behaviors or quirks were something that were spoken about quietly, like they were something to be embarrassed of – Like WE were embarrassed of him.
For years, I have defended myself, made excuses for a multitude of things – his medications, the therapies he receives, the fight for Special Education services, the way I choose to parent and discipline him.
Today, all of this stops. My son D is who he is. My job as his mom is to provide the best care for him that I can, to the best of my knowledge. I am not a sheep – being blindly led by psychiatrists and therapists. I do my research, and I am well educated about his associated Alphabet Soup diagnoses. He HAS to have medicine to function. I don’t let the staff at his school run over me at his Individualized Education Program (IEP) meetings. I am on staff at his school, plus I know the laws regarding special education.
D got the shitty end of the deal when it came to genetics. See, I understand the raging in his mind, and the lows where all you want to do is hide from the world in a closet. I have Bipolar Disorder, Type 1. So does his birth father. I am compliant on my medications. It took me 8 years to finally get it right. There were times I almost lost everything – my family, my job, my mind. I am grateful for those who stuck with me through the good times and the really dark, ugly times.
Everyone knows at least one person who suffers from mental illness. One in FOUR people in America suffer from some sort of mental illness. Yet, there still is a stigma.
Today, for my D and me – this WILL STOP. No longer will I apologize for his behavior to strangers in public because he is on overload or having a meltdown. I will no longer listen to people tell me that my child is on too much medicine. I will not let people tell me I baby him when I choose to talk him down from a rage rather than “spank that ass.” I will keep fighting for his equal treatment at school. He has a mental illness, but he is a bright, smart boy. I will love my child for who he is, not for what others think he should be. I will not listen to negative ex-husbands telling me that I am doing it wrong, when he is only with D four days a month and only is “Dad” when he wants to be.
Today the stigma will stop. Follow me on my and my family’s journey.
Not going to be happy and light, right? Well, you just never know.
This is my 5th Xmas without my love. He was a Xmas maniac, loved everything about it. Our house was lovingly dubbed (by me) the Xmas whorehouse, since it was so covered in lights and knick-knacks and crap, it was amazing we could even live in it; but we did, and loved it. Each year my husband lovingly put together a CD of Xmas music that we used as our card/gift. He collected Xmas music, you see, and, the more awful it was, the better…he LOVED bad Xmas music as much as he loved good. We had a lot of talented friends, so each year we’d also include one cut on the CD that someone we knew sang. The year Tom died I made one, final CD. It had a few really fun cuts on it, it had to, but it was mostly sad, aching, and a tribute to Tom. I included 3 songs that he sang on it, and every year, including this one, it catches me up short to hear his beautiful voice. I decorate the house and the tree (way less whorishly) and listen to the CD’s and have my self a merry little sobfest, replete with alcoholic beverage of my choice and a box of Kleenex.
It’s very hard on our son too. I think this year has been a little better because he is working at something he loves, and is working a LOT of hours. When he gets home though, he tends to close himself in his room and play piano, mostly sad, indie dirges he either writes himself or has learned to play. It’s good, it’s how he handles his feelings.
He’s the one who actually puts up the tree and lights it. That used to be Tom’s job, and then I’d decorate. But now it’s fallen to the wonder-boy, and he bitches and moans all the way through the process; his own little sobfest.
I miss him. I miss him so very much, more than I can express. He was my guy, and there is a vast, gaping hole where he was.
And so often I rail against the unfairness of it. It is so unfair that MY husband had to die! It is so shitty that MY kid has to live without a father, had to be a teen without a father. On and on and on…I could go on forever about the unfairness of it. About the goddamn WHY-ME-ness of it.
Lately, however, there has been this little, insistent-but-kind voice in my head asking me “why NOT you? What makes you so special that bad things aren’t supposed to happen in your life. Look around, look on this board you’re writing on, everyone on here has earned the right to SCREAM why me! Why are you not supposed to be going through this? Who of your friends would be a better choice?” maybe it’s just insistent and not so kind, that asshole voice!)
And, I’ve gotta say, I’m starting to listen, at least a little bit. I’m trying to measure my bitterness by tsp vs. tbsp. I’m looking around and seeing that others have it bad too, maybe worse.
I am sad still…grief doesn’t go away, it just is. Xmas is a hard time for me, and then in January it’s the dead date, so… I miss him. I’d kill to have our old life back. That’s all the truth, and has been for the (almost) 5 years he’s been dead.
But the house looks beautiful, and my siblings and their kids will come over on Xmas Eve, as usual. And I have a wonderful son and a great present for wonder boy this year that I’m so excited to give him. I had the best husband and the greatest love that I could ever wish for…why not me for all of that too?
Because that little voice is also there to remind me of the good things, if I listen.
And that’s my Christmas post, and with it comes hugs and love and peace for everyone here on Band Back Together (another one of the good things I have to remember).
