I'm new here!
Hi, my name is CarmeninChicagoland. I'm here because
Having my beautiful daughter Alice was the best thing to have happened to me. When she stares up at me with her deep blue eyes, untainted by the world, I melt like a marshmallow over a campfire. However, a hard realization struck me; #Depression does not discriminate. It does not care that I just had a wonderful baby. As ecstatic as I am to be a new mommy to my little girl, I still have feelings of deep depression to battle. For me, it’s not post partum depression. I have no desire to run away from home, no ill intentions or thoughts toward my baby, etc. And if you are experiencing those things or suspect you may be experiencing PPD, help is available! In my case, I am experiencing the same depression I have felt before, during, and now after pregnancy. I thought my depression was intensified during my pregnancy because of all the complications I suffered. I dealt with #HyperemesisGravidarum (excessive vomiting/extreme nausea) all the way up until the end. I was hospitalized on several occasions to be given IV fluids and medications to keep us both alive. What I didn’t expect was for my mental illness to come back full force after delivery. This was ignorant on my part but I wrongfully assumed baby bliss would send depression packing.
On the contrary, my illness is a vile and cruel manifestation within my brain. It tells me my husband and baby would be better off without me. Logic and illness are enemies because I know of course this isn’t true but the feelings are SO overwhelming and intense it’s difficult to believe logic. It feeds me lies day in and day out and requires constant management on my part. While I absolutely adore being mommy now, at times it is challenging to balance my #MentalHealth while taking care of my tiny person. It is not impossible though and if you’re struggling as I am, I want that part to stick. It. Is. NOT. Impossible!
Some things that have helped me are working with my therapist and devising a custom plan for me and my depression. depression affects us all differently so it’s not a one size fits all treatment style. I for instance struggle with thoughts of self harm so part of my plan is to utilize my “self soothing kit.” This is just a simple box I filled with comfort and distraction items such as a fuzzy blanket, tissues, a journal, coloring books, and more. When I feel the urge to self harm, I go to my self soothe kit in hope of retraining my brain to utilize healthier coping mechanisms. Also inside my self soothe kit is a list of things to do instead of self harm. An example would be to meditate or paint. Sometimes in crisis mode my mind is not focusing on these things and the printed reminder helps me recenter on more positive coping skills.
I often feel I won’t ever escape the grip of my illness. It feels like an ever present cloud looming over me, waiting to release another torrential downpour that will threaten to drown me. Yet somehow, I always persist and as a result, I see the sun again. My Alice is my sunshine and I am so grateful for her and my supportive husband, as well as anyone else who has supported me through all of this. Even those who are no longer present. depression isn’t easy for anyone. Not the sufferer nor the person trying to help. But there is always hope and I’m inexplicably grateful to anyone who has ever helped me find that hope when it felt lost.
I’ve known I was Hypermobile since I was about 10 years old, as my right knee bends in, and so does my left ankle, and apparently my GP when I was younger just said “Oh yes, she’s Hypermobile”. I noticed during sports that I had problems with my joints “giving way” and when I started ballet in my teens, the teacher used to shout at me to get me to stop “rolling your ankle in”! Of course, I had no control over it. I had a stress fracture of my foot once during class, but I didn’t do anything much to bring it on. Also my lower back used to regularly “go” during class, and then this affected my Sciatic Nerve, which is unbelievably painful, but I didn’t know why this was happening, as I’d never actually injured my back. I was always very fit when younger, my school friends used to catch the school bus, and I’d either jog or cycle on my racing bike to school. Also, I had been horse-riding since I was 11 years old, so my leg muscles were very strong; little did I know, doing all these sports was the best thing to help my Hypermobile joints, as keeping fit strengthens your core stability and it saved me from many more problems that I would have had if it hadn’t been for my love of keeping fit.
But even though I kept fit, I did notice that I used to get much more tired than my friends did, so I had to go to bed very early, I was often unwell, I used to get large bruises, even when I didn’t really do anything to cause them, I used to find it hard to hold a pen at school for more than a few minutes, I had problems finding shoes that didn’t give me huge blisters as my skin seemed so soft, I could never wear heals as my ankles just used to “go” so easily, so I just used to wear high-tops trainers all the time. I also used to love horse-riding, but the few times I didn’t wear riding gloves, the reins that took layers of skin off my fingers, which took weeks to heal. Another symptom I had were severe nosebleeds, but this was another symptom that no-one could explain. And I also used to get dreadful Hayfever, and I had multiple food sensitivity, and dreadful migraines, and I never knew why it was all so bad.
Then at 15 years old I started getting a severe upset stomach; everything I ate went straight through me and I went from a healthy 10 stone 10lb to under 7 stone; I looked like a walking skeleton and was told by a doctor “if you don’t start eating in 2 weeks you’ll be dead”: He accused me of being Anorexic to “get out of doing my GCSEs”, but this didn’t make sense to anyone because I was an A Grade Student wanting to be a Doctor since I was 11 years old. Thankfully my GP knew I wasn’t Anorexic, and he put me on an exclusion diet, which helped, and I put the weight back on and got better, but it took years, and I never got an explanation for why it had happened. I had to leave school early, I lost all my friends, and I have to give up my sports and horse-riding as I was too weak to continue with it all.
It took until I was about 18 to recover from this, and so then I went back to college to try and get my GCSEs. But, my health was still very up and down, and I only managed to take 2 more GCSEs as I missed so many lessons, and so I left college when I was 21, and started working part-time in a health food store. Even though I wasn’t well enough to study full-time for a medical degree, the health food store sold Homeopathy and Herbal remedies, so at least I felt like I was still able to offer help to customers who needed some medical advice, as the shop offered full training to be able to sell these products. A year after, when I was 22, I met my future husband. We had our first child, when I was 25, and although I still had “off days”, I just learned to live with feeling “not very well” most of the time. At age 28, I became pregnant with our 2nd child, but this time around I was very unwell during the pregnancy; I had terrible morning sickness, all day, every day, called #HyperemesisGravidarum and I lost over a stone in weight and so I was admitted to hospital for IV fluids and anti-sickness injections. I also had Symphysis Pubis Dysfunction; my pelvis opened up at only 4 months pregnant, something which should only happen during birth, and it left me in a wheelchair for a year as I was in so much pain if I tried to walk. I know now, that it was caused by Hypermobility. I didn’t get it during my son’s pregnancy as it is worse when you’re pregnant with girls due to the extra Oestrogen hormones, realising extra of the hormone Relaxin during pregnancy. I also had dreadful Carpel Tunnel syndrome, and could barely use my wrist during the pregnancy. The troubled pregnancy also brought on #ThyroidDisease, and I developed an Underactive Thyroid and I was told many of my symptoms were due to my thyroid condition, and also I didn’t react too well to the medication for it, which didn’t help matters, but even when I was put on a different medication that helped me, I still had many ongoing symptoms and all my symptoms, that I’d had since my teenage years, just got worse after this pregnancy.
I also had a lot of problems with my teeth for years, but even more so after I had my second child. My gums bleed every single time I cleaned my teeth, even when I used the softest toothbrush. I had to have 6 teeth capped as they used to break very easily. I became really nervous of dental visits, as anaesthetics didn’t work well at all, even when one dentist gave up to 6 injections; again, this was something else that I never understood. Also my jaw dislocated twice, and used to make a loud crack if I ate something extra chewy, I haven’t bitten into a apple since I was a child! And I also had to be very careful when I yawned to prevent it happening again.
Over the next few years I also had a few episodes where my speech was affected and I couldn’t think straight and my memory became very bad, at the hospital I was told it was probably a TIA (#TransientIschemicAttack) brought on my migraines, or stress, but I wasn’t stressed and I didn’t have a #Migraine at the time. I later found out these episodes were called “Brain Fog”, but I’d never heard of that at the time.
Then one morning out of the blue, I went completely deaf in one ear, and when I tried to get up out of bed, I couldn’t coordinate my legs, so I couldn’t walk. I thought I’d had a #Stroke, and an ambulance was called because I couldn’t move properly. In hospital it was told it was severe Vertigo, and I was given medication for it that worked, but I had symptoms for many months afterwards. Again, no-one could tell me why I had suddenly developed it or why it was so bad.
And then I became even worse at the beginning of 2012, and my IBS was so bad I lost 4 stone in weight (just as I did when I was 15). I had to be put on a liquid diet and have no solid food for 9 months to help. After many tests and a Bowel Cancer scare, and a #CrohnsDisease scare, I was told it was simply IBS, but that they’d never seen it so bad, but, again, the doctors couldn’t explain why my IBS had suddenly become so bad again. I asked if it could be linked to my hypermobility, as I had noticed that when my joints were extra painful, my bowel problems were worse too, but the consultant said “no, I’ve never heard of that”.
Then a few months later I was admitted to hospital and had a Lumbar Puncture for suspected #Meningitis, as I had such a severe #Headache. I often get very severe headache and migraines, and a pressure at the base of my skull, but this one was particularly bad. After the Lumbar Puncture I had a Tonic Clonic Seizure and had to be put on a Ventilator, and I spent 3 days in Intensive Care. Yet no cause was ever found for the seizure, and I didn’t have Meningitis, but I got no explanation as to why my pain was so bad at times or what the pressure at the base of my skull was caused by, so I was discharged from hospital yet again, not knowing why I and so many ongoing symptoms. In 2013, and desperate for answers, I paid to have a complete check-up at Harley Street, and they discovered that I had a Heart Murmur as my Mitral Valve didn’t close properly, it was overlapping when it was closing. Later, I also found out that this is quite common in Hypermobility, but again, no-one mentioned that at the time. So, I had many symptoms, that didn’t seem to “fit” with anything, and I was always left wondering what was going on, and I had just accepted that a lot of it was “just me”. Exercise, or any physical activity was now making me feel much worse, I was getting more and more fatigued and I was sleeping all the time, but yet still feeling exhausted.
In November 2014 I was told I had M.E. and I was so glad to get an explanation for my symptoms at last, because I just knew that all my symptoms couldn’t just be down to my thyroid disease, and I felt that the doctors were just blaming my thyroid disease as that was the main condition that I already had a definite diagnosis for. But after an appointment with the M.E. clinic, I was told I had Tachycardia when upright, and I did have chronic tiredness, but the specialist told me it wasn’t M.E. after all, and I felt like I was back at square one again.
At the start of 2015 I became worse than ever, I started collapsing when I stood up, and my joint pain was worse; my wrists were very painful, my hips “popped”, my back, knees, ankles were all so painful that is really affected my walking, and it all got now so bad, I had to buy a wheelchair just as I turned 41. After noticing that the reason I collapsed was because my heart was racing when I stood up, I bought a blood pressure and pulse monitor, and started recording my heart rate. Sure enough, my heart went from about 70 up to 150 just from standing up. I researched my symptoms and I found out about a condition called PoTS (Postural Tachycardia Syndrome) that fitted with some the symptoms I was suffering from. So then I put “PoTS and Hypermobility” into Google and it came up with the condition: “Hypermobility Type III #EhlersDanlosSyndrome“, and I said out loud at the computer screen THIS IS ME!! At last all my symptoms fitted! I researched EDS online and I also joined some groups on Facebook for information and support, and found that my story, and lack of diagnosis, was unfortunately not unusual. So, armed with my research and photos that I’d taken of the blood pressure monitor to show what my heart rate did when I stood up, I asked my GP to be referred to an EDS Rheumatology Specialist and I couldn’t wait to see a Doctor that knew about this condition at long last.
I saw the Rheumatology Consultant and he confirmed that I definitely have EDS Type 3, and he said it was an extreme case. At last, after 30 years of symptoms, on and off, I had my full diagnosis; the relief was like a weight off my shoulders, I actually physically felt lighter when I left the hospital. I had a load of blood tests, and I was x-rayed from top to toe, we were at the hospital nearly 3 hours. I was told my gastro problems were in fact caused by #Gastroparesis, which explains why I had so many problems tolerating solid food, so it wasn’t just IBS after all, and he sent me to a Gastroenterologist to confirm this diagnosis. I was also sent to a Cardiologist, to be put on some treatment for my PoTS. I was holding back tears during most of the appointment, and when I left him, I said; “Thank you doesn’t even begin to cover it”!
I just so wish I had been diagnosed when I was in my teens, then I could have got the help, treatment and understanding that I so desperately needed all these years, not just from the medical profession, but from doubting friends and family members too, as when you live with an invisible condition, doubt unfortunately follows you wherever you go, and this is one of the most heart-breaking things to go along with an #Undiagnosed condition. I would have loved to have followed my dream of becoming a doctor, as I still love science and medicine to this day, and I’ve never wanted to do anything else as a career, but my body sadly let’s me down. But, at least I know now what it is, and that all my symptoms were part of one condition. I was diagnosed in 2015, and 3 years later, I have had many hospital appointments and admissions, and I will continue to need hospital care, but at least now, we know what we’ve dealing with.
Sometimes in our lives, there are moments that shape and define us. Other times, it is a specific person who just changes our perspective on everything we ever thought we knew.
For many of us, this whole new world is opened before our eyes, when we become a Mother for the first time. I was no different…well to begin with anyway.
I was born to be a mother. It was all I ever dreamed to be. I babysat every little cherub I could.
I pursued a degree in Early Childhood Education and began teaching at a young age. I knew one day it would be my turn to have my own and while I waited for that time to come, I enjoyed everyone else’s kiddos!
I just assumed that I would be able to get pregnant with no issues and that was my first curve ball. Two years after fertility treatments, I was still childless and felt so worthless that I couldn’t bring a baby into the world. It was the only thing I wanted my whole life and I couldn’t make it happen. We were trying in between my husband’s deployments and at the 2 and half year point, finally-we were expecting!! I couldn’t stop crying when I found out and in that moment, my whole life shifted and became about her.
However, rather than being able to enjoy the experience I had so long waited for; I developed #HyperemesisGravidarum. I spent 2/3 of the pregnancy violently ill and lost 30 lbs. One complication after another kept arising, all while my active duty Army husband was away training. I had preterm labor issues and was placed on bed rest. I remember lying there and in all my suffering, just telling myself over and over how worth it this would be when it was over and that everything would be fine. It was a challenging time, but little did I know it was just the beginning of the challenges I would face!
One freezing January afternoon, my amazing daughter came into this world! I was just so ready to meet her and have the hard part be over and let things finally be normal and experience what I had built up motherhood to be my whole life.
I was handed this tiny little person and couldn’t stop crying at how small she was. They took her away to clean her up, but it quickly became apparent that something was wrong. The nurse wouldn’t stop suctioning her out and I wondered if she was choking. No one was telling me what was going on. I kept asking the midwife “Where’s my baby? What’s wrong with my baby?”
It was not supposed to take this long. I saw a doctor come in and immediately go over to my child. I was now panicked.
After what seemed like an eternity, the doctor came over to me and explained that she was born with a cleft palate and would need surgery. I had never heard of this, but when they brought her over; I saw a big hole in the roof of her mouth and going down towards the back of her throat. I saw no end to it. They started bringing me special needs bottles and pamphlets and telling me how to care for her, as I sat there in shock.
I remember the first night, laying there thinking of all the mother’s all over that hospital, nursing and cuddling with their babies. Meanwhile I was sitting there, suctioning her out as she choked on every 1/10th of an ounce I gave her and being terrified. I cried harder than I had in a long time those first weeks.
There was no time to think or breathe or process anything, because less than a week after she was born; we were sent to The Children’s Hospital in Denver for a full day of evaluations, by every specialist you can imagine. I walked in the lobby and thought, “This can’t be happening. Not to my child.” Granted I am sure that is how all parents feel, when their child develops a life altering illness or gets a scary diagnosis and I’m sure it didn’t help that I was less than a week postpartum with especially raging hormones! As I got into the elevator to a floor of the hospital that would become very familiar to me, I started sobbing and hyperventilating, as my husband tried to calm me down. The day was a blur. All I knew was she was 6 days old and I was trying to pick her plastic surgeon.
I tried to adjust to this massive, unexpected new life in the weeks that followed. I felt like I was at capacity of what I could handle, but there were still bigger hills to climb.
A fever when she was a baby led to a hospital stay, where it was discovered that she had severe #SleepApnea and would stop breathing up to 10 seconds at a time and she was permanently put on oxygen at that point. For many of those first months of her life, I never slept. They told me if she ever even dosed off without oxygen, she could end up with serious brain damage or die. I lived in fear of that happening and was always shaking her awake. I felt like I was being robbed of every experience I had dreamed of. Rather than staring at my little angel sleeping peacefully, a feeling of panic would rise as she would fall asleep and I would run to get her oxygen or try to wake her up.
Through all this, she also had severe feeding issues and had to be on a liquid diet, failure to thrive, pneumonia, #ChronicLungDisease, severe sleep issues, developmental delays, #HearingLoss, multiple ear tube surgery, severe reflux resulting in aspiration, just to name a few of her health challenges. You name it and it seemed to happen to us. It was some of the darkest times of my life, watching her struggle what seemed like every day.
I have always been a person of deep faith and this was the time in my life that I wrestled with it pretty intensely. There wasn’t a day that went by in her first year of life, that wasn’t filled with pain, sickness or terror. Yet there also wasn’t a day that I wasn’t reborn and refueled by this intense love and bond with her. There wasn’t a moment that I would stop fighting for her. I knew that if we could just get through this, she would grow to be one of the most extraordinary people the world had ever known.
When she was 10 months old, she finally got her cleft palate repair. Her Dad was in Afghanistan and I knew I had to be strong to do this without him. I remember going out into the waiting room after they took her back and trying to call my husband on a calling card and not getting through and just sitting alone with tears rolling down my face. It was the longest 4 hours of my life.
I finally got called into the recovery room. I heard mother’s everywhere crying and being escorted out, because they couldn’t bear to see their children be in such pain.
I knew I didn’t have anyone else to come in besides me, so I had to be tough. She needed me.
I walked in and saw her little face coated with blood and my heart shattered. Every time she’d whimper, they’d put more medication in her IV. I can only say that my faith gave me a peace I couldn’t understand. I gently picked her up and sat in a rocking chair with her and with all the chaos surrounding me, started softly singing “Jesus Loves Me” and I knew I wasn’t alone.
It was an uphill climb after that, but this was the finish line I told myself. If we could just recover from this, I could finally breathe and enjoy my life with her.
I wish I could tell you that she recovered just fine, but we continued to face so many obstacles and she was in a constant rotation of therapies to try to help her catch up on all her developmental delays, that we assumed were because of so much time being sick and in hospitals. There wasn’t any part of me that thought she wouldn’t get on track with her peers, once she got physically healthy.
However, as time passed, she didn’t “catch up.”
I read an article about early intervention and autism and immediately became concerned that my daughter had some of the warning signs. When I initially spoke to her developmental interventionist, she thought her positive qualities outweighed the warning signs, but it would be a wait and see game. But as months went on, we knew something was wrong. We could call her name 20 times and she wouldn’t turn at all. She wouldn’t talk. She wasn’t learning sign language, despite my constant efforts. She wouldn’t point and still wouldn’t eat solid food.
At this time, her therapist approached me and I said I would do an autism checklist online that day. Everything within me dreaded sitting down to that computer, but I knew I had to know if I was to help her.
As I checked off one thing after another, the tears started falling.
“No God, this can’t be real. Not this. It isn’t fair! Hasn’t she been through more than enough?” But it was real. On March 23rd 2012, I heard the words no parent wants to hear.
“Your daughter is autistic and has global developmental delay, an eating disorder and sleeping disturbance.”
How did I ever think motherhood would be easy, magical, and all around dreamy?
My mind started racing with questions. What would her future be like? Will she ever talk?
Will she ever call me Mama? Will her life always be this hard?
I let myself wallow in self-pity for about 24 hours and then I decided I would not give in.
I would fight for the best future she could possibly have. I would do everything I could to help her. I had to give all I was, to help her be all she could be.
That defining moment of my life was almost 6 years ago. Today, my daughter is a delightful, kind and hilarious 9 year old. She is quite literally the best person I know. She went from no speech, to talking my head off all day long. She has the most beautiful smile you’ve ever seen and every time I see it, I know I would choose her and do this all again.
Thanks to early intervention, amazing therapists and a spirit that refused to be broken; she is completely developmentally on track with her peers and amazed everyone who ever worked with her. She never gave up. She never took no for an answer. She never stopped believing that she could change the world and I truly believe that she will! She already changed my life and many others in her short, but amazing time here.
If you asked me now if motherhood is every thing I thought it would be, I would say. “Absolutely not!” It has been nothing I anticipated, nothing I was prepared for; but it has been the love I always dreamed of. I know nothing else, like this love I have for her. Being her mom, has taught me more about the world I want to create and the beauty and resilience in life; than every experience I have had till now, put together!