You have no idea how much you can handle until it all falls on you in one moment, or repeats over several years. My name is Lisa, and before everything happened, I thought I was a happily married mom of three sons. One was a tween, and two were teens. Life wasn’t perfect. I never expected it to be. Life wasn’t what I wanted, but I figured we’d get there some year.
Ha, some year. That’s a joke we tell ourselves to handle the reality of right now. We’re not happy, but hey, some year it’ll happen. Everyone repeats the hype right? When my ship comes in. Hell, you’re lucky mine sunk. I’m working for the day I can enjoy my life, and I’m killing myself at a job that doesn’t want me, can’t stand me, would replace me in a minute, just so I can afford all these things I want after I retire from this job I hate.
Notice how every single little thing is something you could change with a choice? Each and every one of the reasons so many people are “in pain” are because they choose to be in it and stay there. Everyone thinks it can’t get worse. Everyone thinks they already know what rock bottom’s like. If only they knew it’s time to wake up.
It all started when I was 6 months pregnant with my son, who was stillborn on Feb. 29, 2004. That day was horrible. Due to my son passing in utero, I became deathly ill. I had 3 or 4 different types of infections. My fever was over 104. I was in so much pain (I thought that was a lot of pain at that moment, but I was wrong). I thought I was going to die. That night, after I came home with the understanding I couldn’t have my son’s body so I could bury him, I even begged for death. To just go in my sleep. I didn’t want to wake up. I was messed up, and for a while, I continued to be that way.
After several days, when I started feeling human again, I started to live life again. It was kind of on auto pilot, but I didn’t have a choice. I could only ignore everything else in my life for so long before it came beating down my door, demanding my attention. A friend saw what I was dealing with and told me to read a book about the loss of a loved one. I read it, and I still do to this day. My son’s death is not something I’ve ever gotten over. I think that plays a part in what I deal with on a daily basis today. It helped me learn to live again though.
Over a year later and after all kinds of doctors and tests and health issues and near death scares, I gave birth, but this time, it was a little girl. She was the tiniest thing I’d ever seen. Even my youngest son, who in fact is my smallest baby, looked bigger than her. She had peaches and cream skin, little rosebud lips, small hands, teeny little fingers, feet her father would stick in his mouth cause they were so so little, and toes that would curl up and stay that way until you tickled her. Getting pregnant again wasn’t something I was trying for; my now ex-husband came home one night, made himself happy, and fell asleep. I didn’t tell him I hadn’t taken precautions that day like I should have because he didn’t inform me he was going to visit that way. Can’t change it now.
All through my pregnancy with her, I was so sick. And for me personally, I couldn’t see another choice. I knew she was a girl right from the start. I knew she had to be here, and in my heart, I knew that I couldn’t stand to have a pregnancy end in any other way. With baby in my arms, off we went. She was sick too. My body was incompatible with her. My immune system didn’t attack her, but everything else didn’t like the fact I was hosting a nine-month-long Olympic event. All through the pregnancy, she was healthy, from everything we could tell. I couldn’t eat or keep anything down, but she was gaining weight, and my stomach kept getting bigger.
Almost immediately after she was born, she was so sick. We spent five harrowing days in the hospital. Her with an illness they couldn’t define, and me with pain I felt from the instant I got a screwbar from the epidural. The anesthesiologist put the needle in said, “Uh oh.” I asked him, “What do you mean, uh oh?” He said, “Don’t worry about it. I took care of it.” I should have known better than to trust him, but the damage was already done.
In the following days, my daughter developed jaundice so bad she came home on a bili blanket. She kept throwing up. The doctors at the maternity ward scratched their heads and their asses and couldn’t tell us anything. This throwing up settled into a set pattern of her being sick. She would puke for a few days, then be okay for a few weeks and start all over again. She was hospitalized through the ER. She was dehydrated. She was having seizures. I could only eat like 7 foods that didn’t seem to trigger these events of being sick. I nursed her. I stayed awake through the nights and days with her. I watched as every single time this damned monster came to claim her, she would loose up to 1/4 of her body weight. She was already so small that she was 5th% H+W ratio.
Before I knew it, two and a half years went by and an exploratory surgery which resulted in nothing. They couldn’t define what was wrong with my daughter. I started having to hear crap from her father and his family. What was I doing to her? Why was I making her sick? Why didn’t I just admit that I was doing it, so it would stop, and I could get the mental help I needed? Why did I need to get her sick to gain attention? I wasn’t doing anything to make her sick. I single-handedly was cleaning up everything she was sick in or on. I was single-handedly keeping track of everything I ate, every time we did something, and every time she got sick. Every single aspect of every single day so we could try and figure something out.
At a coffee shop we loved to frequent, we found some answers to questions that would lead us to a diagnosis. Unexpected for sure, but I’m so thankful, even to this day. Every time we went in, every person that was there that knew my daughter – who was queen of the hill, let me tell you. I was able to allow the kids to roam around a little and get something to eat and drink, while Her Highness was coddled by close friends, and I could sit back and just be. This one particular day, my daughter had just ended another one of her frequent bouts. The owner’s adult son stopped what he was working on and asked me to come with. Sure. We walked over to the counter where his mom was, and we talked about Laurell and her condition. Were there any new pieces medically? Were there any breakthroughs? Was there a chance of hope? Some other questions. Finally, after quizzing me for over a half hour, he and his mother got real quiet and looked at each other. I said, “What?” He explained to me, “Oh, it’s just that I had this condition as a kid called CVS.” They went into some details about how he went through so many things like what they saw Laurell dealing with. I was stunned. Could the beast finally have a name? I promised to get started on new rounds of testing. CVS can only be diagnosed by eliminating EVERYTHING else, and when that’s all that’s left, then that’s what you have. A few months later, I went back in with confirmation. They started helping me set up things that had helped him deal and avoid “triggers” – things that start the CVS cycle. They worked with me on how to keep her hydrated and calm during an episode – the period of time the child/adult is sick- and with them, her PCP, and GI specialist, we caught the beast by the tail.
It’s been 10 years since that time, and to this day, Laurell has gone from 5th % H+W ratio to over 100%. Shes taller than me, and she’s so beautiful and so strong. I don’t think I would have had the ability to deal with both of our issues that I’ve had to wrap my head around if it wasn’t for Lori and Jake. I still stress cry over what might have happened (I’m doing it now) if they hadn’t been able to stop the madness with her condition. She hasn’t grown out of it. And since she’s become a young lady, the beast has grown a new set of teeth, but we take it in stride and quickly figure out the trigger and avoid all other known triggers to keep the episodes down to as bare minimum as we can get – once a month, 2 to 5 days with all the showing signs of CVS, but little to no vomiting. It’s still a struggle. She still gets stressed because she wants to be normal and go out to eat with her friends or go to events that will trigger her. She can eat out at times. She can go to events. She can’t get everything, but those times that she can’t we do something special but quiet at home to show her I still love her and will always do my best to let her lean on me. I feel like I owe her more than that, even when that’s all I can do. It’s believed the cause of CVS is a mother who has some type of autoimmune disease.
On the other end of this is my own path. From the time of Laurell’s labor/delivery/birth, I was in ever-increasing pain from her babyhood to tween years. I mentioned before that almost immediately after her birth, the pain I felt where the epidural had been didn’t go away. It only got worse if I started to move around or if I had to bend down to get the baby stretch up or some other extended movement.
My now ex-husband wasn’t supportive. It was chalked up to “my need for attention” they felt I was attempting in their bogus claims of making my child ill. I had to work. Luckily, I found a job as a breastfeeding support counselor in my local commonwealth. I adored that job. The money didn’t go too far, but we were able to do some small extra things for the boys. We didn’t want them feeling like they were being left out with a new tiny sibling in the home. It went to day outings, going fishing with him. It went to all-nighters at the drive-in with me. It went to fast food outings with their girl, or to the mall (we binge shop at Build-a-Bear so bad). It went to special treats like a game or a movie. Things the boys could agree on or do individually if that was their alone day. Pick a parent, pick an event. Sometimes it was both of us and said son – Baby Laurell went along because she refused bottles – but we made the day’s focus about that young man. Sometimes it was the whole family, and said son would pick, and off we went to do whatever was chosen. Hey, it worked.
As time went on and stress over Laurell’s health and my three teen sons built, I was getting worse. The pain never ended. The fire I felt under my skin didn’t get any better. The pain in my back spread, and as it spread, I could swear I felt individual nerves lighting up like a match had been taken to them. I repeatedly went to the family PCP, and he kept swearing I needed to stay home and do my “wifely duty” – excuse you! Or he said I was depressed and looking for attention. This is where my ex-husband got these ideas that I was attention seeking, though I’m not sure where the hurting my child came in. I think that was his mother. I fought with this man for two and a half years. By that point, I was cheesed off something serious. I had been trying to get my insurance to allow a second opinion. I had been trying to get said PCP to allow testing and imaging to happen. I had been trying to get said husband to allow me to keep going to PT. None were allowed. They all swore that all I needed to do was buckle down and accept the fact that nothing was wrong with me.
One day, it got to the point I where couldn’t pick up my 2-year-old. Realize please that she was not the size of a 2-year-old. I have pictures of her at 18 months wearing clothes that were for 6-month-olds and newborn baby shoes that were a 0-1. I couldn’t bend over. I couldn’t stand up if she was in my arms. I couldn’t take it if one of my sons or my now ex-husband handed her to me. I couldn’t push her stroller or use the bathroom by myself. I was in so much pain I was in tears because that was all I could do. My eldest called up the PCP and cussed like a sailor – he was in trouble for his use of language choices, still being underage – and demanded I be seen as soon as we got there. As per men’s code, I was seen within 7 minutes of walking into the doctor’s office. Baby in hand, my son let the doctor know exactly what he thought of him and his ignoring my pain. Laurell started to cry, so he walked out to comfort her, leaving the doctor with the words, “You better listen to understand what she tells you. This has been happening, and all you do is put it off and tell her it’s all in her head,” hanging in the little exam room.
The doctor immediately started in on how I was attention seeking etc, etc, etc. I popped a cork, and it didn’t go well for him. Now please understand, I didn’t abuse him, I just abused his notion that I was making it up. At the top of my lungs, I demanded he go through my files and see how long it had been since I started coming to see him every two weeks with the only outcome being, “Go home, it’s all in your head.” I demanded he tell me how many times he gaslighted me because I was being “hysterical” from having a baby. I demanded he tell me how many times he told me to go home and make myself available to my husband and stop seeking attention from other men. Over or about 85 times combined. He had his nurse come in to confirm. I had been in like clockwork for over two and a half years.
Blood tests, imagings, and so many tests – so many things coming back negative or “looking” negative. Ah, that’s a key word I need you to remember. I got a diagnosis of fibromyalgia within a few months. There was more happening, but he felt it was beyond his ability. So I started at a pain clinic. More tests, more blood work, and procedures where a needle was placed into my back and directly into my spine. One by one, things started being added to the list of what I have that’s gone wrong in the now three years after her birth:
Severe multiple food allergies
Severe multiple medicinal allergies
Severe multiple environmental allergies (I was sent to an allergist who insisted I was in the top 10 of most severe allergies, amount wise.)
Carpal tunnel syndrome in my arms
Hip Bursitis both hips
Peraformis Syndrome both sides
3 herniated discs
High blood pressure
Arthritis of the spine
Degenerative Disc Disease
Chronic Fatigue Syndrome
Chronic Vertigo – at risk for falling needs a cane (I’m 36 at this point in my life.)
2 pinched nerves
At risk due to hyper sensitive very under-developed immune system (Not boy in a bubble, but low.We believe this is the cause of Laurell’s CVS. I’ve had this issue all my life.)
With the specialist/pain clinic and my PCP working their tails off, we still couldn’t find the reason – the ONE big reason. Everything together or by itself would cause issues, yes, but not the over-extended deep pain in my back that nothing we were doing affected or helped. The pain shots were supposed to help, but they either had no effect, or after the limited effect, I felt worse and in more pain. Eight or nine shots a round, and we did about 7 rounds over the years. We shouldn’t have done any; we didn’t know it wasn’t helping. We didn’t know that it was making my big issue worse. We were supposed to be helping me heal and get back to a life, get back to a job, get back to being a mom. None of that happened without ever-increasing pain.
Within a couple years of my start at the pain clinic, Laurell was a clockwork CVS-er. I knew what times to schedule everything around, and I kept living my life, trying to make everything make sense, make everything work, and make a life as this new limited being I was becoming. I didn’t have the chance to mourn the loss of my free self. I haven’t had the time actually until this year, 2017. Shortly before Laurell would have turned 6, I made a heart wrenching discovery that led to a bitter bout of mistrust and anger with my ex-husband. I found out that I was dealing with HPV. I was barely visited by him, I wasn’t cheating in any was shape, form, or manner. I wasn’t getting answers from him either. So I started to dig. Within weeks, I discovered he was spending thousands. At home, we were living like third world inhabitants, eating $12.50 every two weeks for 5 people. He was bringing home steak, filet mignon, shrimp, lobster, and other high-priced foods for himself while we were starving. The two older boys had come to the decision that life was better being old enough to move out and departed my home in a manner that left me bereft and heart broken. They figured less people at home meant more food for those that had to be there.
My ex was still blowing money like it was water and started getting cheesed off about little things. He started cussing me out and keeping me from friends and family. Started not allowing me to go to much-needed doctors visits for myself–HPV can turn to cancer if left untreated. Started limiting my ability to do a lot. Started trash-talking me. Started in on the one son left at home. Started bad-mouthing the two that weren’t at home anymore. Started acting jacked up and hyped like he was tweaked. Needless to say, I kept trying to keep things together, knowing that if he started to swing that was the point of no return. All other types of abuse had happened–yes, all to me and a few to our daughter, but never at the boys. At the end, I was searching for reasons. I found out his several hundred a month missing was going to drugs and drink. I still have no doubt it went to women as well, since I couldn’t have developed HPV by myself. I refused to cheat, even when it was bad. I didn’t know what to do, but I knew something was going to happen, and it had to fast.
I confronted him and gave him a 3 week time limit. I told him I figured out the drugs and the money, and he needed to get clean before I forced it. The time frame came and went. I called his boss. I called his parents. I called my parents. I called his friends. I called anyone I knew that would be there for him because I was scared. Not of him physically, but I was scared of what he would do to one of the kids in his altered mindset. I called our insurance, and I made him attend a clinic. Six weeks later, he started swinging.
For the next six months-ish, I spent time in abuse shelters. I tried, as all people do in that situation, to wrap my head around this on top of everything else. I have a daughter starting school and a son close to graduation. I’m homeless with two kids. I have no income because by this point I can’t hold a job. My list of conditions was still increasing. My pain was un-managed, thanks to my ex husband’s pilfering things I needed. Stressed out beyond belief, my pain clinic stopped my meds, due to the situation at home, and would not start them up again until I was safely away with concrete proof. Stress adds pain. Pain adds stress. Some situation I was in, huh? I didn’t know what way was up. My stepfather died as well. I found him that day.
A couple months after his funeral, I moved into his home and out of the shelter. I owe my mother quite a bit, but I don’t think Ill ever be able to repay her everything. The kids and I stayed there 3.5 years until after boy-child was old enough, moved out and in college. The little one, still so small and still so frail, was going up to 15-16 months without episodes of her CVS.
Heathwise, that time was a nightmare for me. I’ve had so many back surgeries I lost count. A piece of the L4-L5 broke off and laid on my spinal cluster for 6 weeks until surgery. I couldn’t sit, walk, or stand. I had a midget and a wild child wanting his freedom, and I had at best guess, 6 or so back surgeries after the removal. Due to that piece breaking off, I have severe nerve damage on my right side. I’m partially paralyzed there now too–arm, torso, and leg. I’ve also had gynecological surgeries. The last one was bad enough that the kitten box had to be removed. I had a bleeder in that surgery, and according to the doctor’s exact words, “half the blood in my body.” If he hadn’t been able to stop it when he did, and I lost one more drop, I would have been at risk and needed a transfusion.” That would be a neat trick. Too many allergies on my part to match up, I was told.
By this point, Laurell was 9-years-old. We could hold her beast at bay. She could attend school and play with her friends and go out and have normal fun. We had a list of things that were wrong with me that was as long as my arm, but that was what was causing the pain. At this point, we’ve added on about 5 new things. Could be more. I don’t remember. The pain was so bad, I slept maybe a couple hours a night, and that was broken up into 15 minutes here or there. Not enough to be any good. So many surgeries, procedures, added diagnoses. I’ve gone up to 5 herniated discs, and I was wearing a back brace several hours a day. I needed help in and out of the tub, but no one was there to help. I needed help just cleaning my home. Nothing was available to me.
I couldn’t get approved by disability. I fought them with everything I had and nope. I got an advocate on someone’s suggestion. Well, they said lawyer, but no one that I talked to seemed interested, saying it was a long shot at best, and they didn’t see me getting it because every known thing I had wasn’t enough to explain the pain I was in, so they couldn’t prove I was faking the pain just to be lazy. Oh yeah, this was the new label for me. I was a lazy, useless blank (Ill be nice here since the adjectives were plentiful but impolite). The divorce proceeded, and it was horrible. The ending was just as much a nightmare as the whole time he spent lost on altered status. The judge agreed with him because they didn’t have a name for my issue or what was causing my pain, and CVS is still so rarely heard of. Most people find it hard to believe a child could be that sick for up to months at a time and a woman could be in so much pain she never takes a breath that doesn’t set every nerve ending on fire and still act normal instead of acting out due to the pain.
How do you prove to a judge something exists that he cant see or measure, and SSA won’t bother with? Didn’t matter. I got to keep the girl. I was on fire from the pain, so them deciding to shoot fire arrows at me didn’t matter or make a difference. So long as I had her, and she didn’t have to live with a man who was still then (still now really) struggling with his own inner psyche. I decided Laurell and I had to get away for our own benefit. For her health for my health, for a chance to stop the nightmare we lived in because of someone else’s choices. A friend was suffering from stage one breast cancer. The chemo and trial medications were making her so sick, she had to have someone live with her and take care of her. Sure, why not. It was the chance I was looking for. I mean, if you ask, won’t you receive if you are truly in need?
So after those 3.5 years of living in a home that was our safety net, we packed up we bused out. We looked to the future and hoped for better answers and a safer life, 1,400 miles away from everything and almost everyone we knew. Scary when your child has a rare condition that can’t be controlled and stress/no sleep/crappy food are triggers. I was freaked out about that, -and my pain levels went through the roof. The only pain that came close to this was the 6 weeks that bone piece laid on the tail of my spine, messing me up more. I knew I would have months to a year before everything got figured out, and I was approved for medical in the new state, so I could start seeing a pain clinic again. I knew I would have to go without pain meds, and I would have to rely strictly on yoga nidra and self reiki to get through, so I didn’t loose it.
It took six months to get it all squared. I was taking care of a cancer patient that needed constant care, constant encouragement to eat, and the will to keep living. I was dealing with a child starting at a new school, well into the school year. I was dealing with no valid way to get myself into pain care and to curb the pain even a little, so I could think clearly. I was dealing with sleeping on the floor because I refused to have anyone else do it so I could have a bed. Laurell? No way, she’s a child. This move was my choice. My friend with breast cancer? She was at a high level of chemo pain and was talking about finding a way to not let it get to her. I was not putting her through anything else. The couch was old and broken, and I could barely sit on it comfortably. We did search, but it was difficult, due to money constraints. Just one more thing to add to the pain.
Several months in, my friend wanted to move into a bigger apartment. Laurell and I were sharing a room. Laurell wanted her own room. Her “auntie” (my friend), having no children of her own, decided that spoiling the midget was her right and mine to shut up about (insert dramatic eye roll). Sure, okay, let’s get a bigger place. More for me to clean up. Plus, tada, she’s no longer dealing with cancer and looking to go back to work right after the move. Okay then. We moved, and I got my own room and rented-to-own a bed. Love that bed. My daughter’s asleep on it right now (envision me hanging my head in frustration now).
Shortly before she went back to work, I started another round of back shots at the new pain clinic. This time, I was in so much pain, I couldn’t walk without help from a person on my left and a cane on my right. I couldn’t sit up on the way home. And I couldn’t clean the house, make food, go shopping, or care for the kid or the cat we recently adopted. Nothing. The pain doc sent me for an MRI. One and a half weeks later, I got a call from the pain clinic: “Get in here, I’ve made you an appointment. Get here now. I don’t care whats happening, come to the office.” I’m freaked out. I’m losing my mind. My friend was right next to me, and I had the speaker on, so she could hear it too. Before I was even off the phone, she had a sitter for the kiddo, and off we went.
Have you ever heard of Adhesive Arachnoiditis? Up to that point, I hadn’t either. The doc gave us a brief and mild explanation. He also told me when I finally DID go for the SSA hearing, there was no way or chance they could turn me down now. Okay sure. I’m relieved. I finally had a name for my own beast. I could go home and look it up, do the research, learn about it, find out what the cure is, and get back my life.
Adhesive Arachnoiditis is the scarring of the second of three sacs that surround the brain and the spinal cord itself. When damage from needles/back surgery/neck surgery/accidents/etc. cause scarring along this sac, it twists up. It takes the other two sacs with it sometimes. Those are the really bad cases because it can take up the root nerves–the nerves that communicate to your organs from the spine–and other nerves. It twists them up when it starts to twist around the spine. Either way, it starts to crush the spine, causing more pain that most cancer patients go through. It causes your nerve endings to be on fire. It causes deep-seated pain in your back or your neck. There is no cure. The bottom of my world fell out. I was tail spinning again, and I didn’t think I would ever be able to catch myself and stop. I’ve had this for over twelve years–ten at that point. There is so much damage, I should be bedridden, unable to walk or talk, at the very least. At the very worst, I should have met my maker and shook hands with loved ones that went on before me.
Most days, I can keep from spinning. Four months after that realization, I had my hearing for SSA. I was awarded my case some four more months after that. I moved Laurell and I into our own apartment on the other side of town. I still hear about my friend, but since she’s gotten better and back into the full swing of her life, she wants to live. She doesn’t want reminders of what was almost her fate. Honestly, that’s fine. I’m proud of the fact that, 6 months after I got here, without pain meds for myself, I was able to get her everywhere she needed to be, physically, emotionally, and mentally to the point she could start to live again. She couldn’t take this limbo. Many can’t. Those of us that have no choice treat it like a frenemy, I guess.
I got almost everything kiddo and I need here where we live. It’s quieter. It’s slower. It’s humdrum, and that’s okay. I can catch my breath, and I can live on my terms. Laurell went from barely above my waist in height to taller than me in these last 3 years we’ve been here. She’s grown so healthy and beautiful. The changes in her alone are amazing. We’ve made friends. We’ve built a life around, me, her, and one crazy cat. We love him, and he’s all ours.
This is our life. This is our story. This is how you learn to take life on your own terms. Sometimes it’s one breath at a time. Others, you blink, and it’s two months later. I’ve learned finally that happiness isn’t a when it’s a choice. I’ve learned that even in spite of all the pain and the stress and the unknown, I’m happy. I’m scared, I’m angry. I’m in disbelief, but that’s because since life slowed down, I can finally take the time to mourn the loss of the freedom I had so many years ago that I will never get back.
I’ve learned that you can’t fight your own body and disbelievers at the same time. I’ve learned I have to walk away from loved ones, family, and friends, who on so many levels refuse to believe that I’m not lying about myself or my daughter and the rare conditions we both developed basically at her birth. I’ve learned it makes me a totally different person, and that’s okay too. I stress less, I love more. I don’t argue, I walk away. I don’t just show up, I invest and I love.
I will never be able to change a mind that wants to stay closed. However, if your mind is open, and your heart just has to know, I can show you the path that we’ve had to go. I can show you a little girl who isn’t so little anymore. I can show you how she’s become the strongest person I’ve ever known. I can show you the devotion a mother has for her only daughter and how, because of this one little girl child, it changed my entire world. I’d even argue, with everything we have to deal with, it’s still for the better.
Lisa and Laurell
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.