Join Tamara as she searches for answers about her undiagnosed Illness. Please be respectful of her and her story.
Hi, thank you for taking the time to read this, I apologize in advance so Sorry this is the LONGEST read of all time. Kinda a run down- I was born in 85, diagnosed with Lyme in the late 90’s I’m 32 currently.
I have 4 kids- ~15 yr old daughter, I was 42 weeks pregnant with her when after really persuading the obgyn he finally induced…let me tell you I was READY her birthday is 9-15-02 so I went all summer super big and pregnant. – now here’s the kicker she was 6 lbs 14 oz or so and I was 42 weeks pregnant. No one ever said anything, never thought it was a big deal. I got my labor/delivery and her birth records recently.
Apparently my thyroid was off in early pregnancy but towards the end it was in limits, NEVER told me anything. Her placenta was off too I can’t quite remember right now but I have the paperwork. Never told me! But in researching after 40 weeks the placenta can start to have issues so who knows.
She’s fine now she’s taller than me, gorgeous, smart, sweet. She’s a perfectionist/stresser, she is having bilateral knee pain for about 2 years they think it may be a torn meniscus, she has to do 6 weeks of pt 3x a week before an MRI can be done. But that’s the only medical stuff that’s known about her.
~12 year old. She was also 6 lb something when she was born. She was born with a vascular birthmark. I asked a MILLION TIMES did I do something, was it the car wreck I was in when she was almost born (I had complications after, she rested low after and major sciatic pain till delivery), I asked if it was genetic etc. Everyone told me nope just how she was formed. She has had too many surgeries some a few hours some 10-12 hour long surgeries. The AVM/VM involves her left ear/head/neck/skull its not into her brain but not from lack of trying, we have surgeries to keep it at bay. She’s also taller than me,gorgeous, smart, sweet, spunky, wonderful, brace, my hero.
~5 year old he was 6 lb 14 oz or so too, my labor/delivery and his birth were HELL! I think we were both close to dying. He had numerous issues, he was hypoglycemic so they kept giving him sugar water bc he was lethargic and was not waking to eat. No problems during pregnancy, etc. At 5 months old or so we found out he had a brain cyst, has left sided weakness. Fast forward he has porencephaly, porencephalic cyst, periventricular white matter loss (it’s not progressed and he does NOT have hydrocephalus THANK GOD), might have cerebral palsy. He is having seizures, he had an EEG that came back abnormal. (He is going to see a pediatric neurologist in December hopefully then we can find an accurate diagnosis and treatment plan) he currently has done PT/OT for over a year. He is also gorgeous, smart, sweet, spunky…he’s a freckled faced red head- he’s like a sour patch kid, but everyday he tells me I’m beautiful and he loves me constantly.
~2 year old he was my BIG baby 8 lb something, came out with the cord around his neck and needed the bag and mask for around a minute, he wasn’t breathing or crying he was purple and bruised. I had no problems during pregnancy either. (I didn’t with any of their pregnancies at least none that I was told about). He is having seizures too, he had an EEG the tech said he is having seizures 2 minutes in and said I’m calling dr now, the report came back saying he was 4 and normal results (I’m taking him to the same pediatric neurologist on December 4th, to have both my boys evaluated). He’s also gorgeous, smart, sweet, spunky. Ok so all my littles came via induction/vaginal delivery. The first at 42 weeks, the others almost 40 weeks I was 39 weeks plus 5 day or more with them. My body didn’t seem to want to progress to exit the baby.
More my issues, I AM EXHAUSTED ALL THE TIME. Recently diagnosed as Chronic Fatigue Syndrome (CFS). I AM A STRESSER! I’m not even kidding it’s not mild I stress a lot. I finally asked my dr for a RX of xanax after a horrible couple of dr trips way out of state for my 12 year old, I tried to not and finally caved in 2016. I don’t take them daily, they set in my bathroom but the fact that I have them is a security blanket.
I have a horrible memory, like ppl talk about their childhood or my siblings talk about our childhood and I’m like “cool” because I have so much I don’t remember, I have been married 16 yrs and I have a hard time recalling his and my memories, I have 4 kids same thing. I have brain fog a lot… i can’t remember current things, I have a hard time focusing. Ive had troubles in the #2 area a lot throughout my life, I thought maybe I had IBS or something.(TMI so I’m sorry- but I’m going to get real…I had pellet like poop A LOT!)
I remember having “symptoms” of gallbladder issues since I was pregnant with my now 15 yr old, she was born in 2002…I was 16 when I was pregnant with her. I had my gallbladder removed in 2014, so I no longer have my gallbladder it was riddled with stones and much too large. (I do not miss it, I was in pain everyday, I thought it was gas, I took hot baths and showers like 3x daily, took the gas pill phazyme daily, etc and now no pain, no phayzyme and #2 was good till recently more in a minute).
I had shingles a few times after that ( same area my upper right back/shoulder/bra area). My dr says you can only have it 1 time so ignored the other times, I have nerve pain for maybe 2 years after in that area. I swear my thyroid is off but my dr only checks tsh it’s always near the edge but within limits so he says I’m fine, never ran a full panel. I gain weight super fast I recently was at 185 …I’m like 5’2-5’3 so that’s hefty for me, I finally got my dr to prescribe phentrymene (sp) bc I needed something to help. I’m at 150-155 lb now, wanting to get to 130ish. (Sorry, I’m kinda an open book so I’m giving too much info).
I get knots in my feet all the time, they hurt so bad, they can be rubbed out…is that plantar fasciitis? I have low temps period, like 97.5 is my norm so like 98.5 I’m feeling. I was in a car wreck at the beginning of the year and I’ve had neck, middle back, lumbar, right knee pain since, and since my #2 has been off again. It was just I was rear ended while I was sitting at a stop sign with my foot on the break pedal. I wasn’t ran over. Well I have grade 1 spondylolisthesis, spinal stenosis, etc etc etc.
My youngest is 2 1/2 and I breastfed for 4 months I’m still leaking milk colored fluid when my nipples are stimulated. The livedo riticularious rash, I have it faintly always but if I’m cold it’s BOLD. A doctor recently told me she thinks I have Raynauds. Hypermobility maybe Ehlers Danlos Symdrome (EDS). Vitamin D Deficiency, my blood work showed my vitamin D level was a 6 like a year and a half ago, recently rechecked it’s a 20. My dr wants me to get to 50-60. Iron Deficiency it’s always low, I have been anemic like my whole life.*Casein sensitivity- my blood worked showed my levels as 8.5 and the range was <2. (I’m sure there’s more symptoms too, eventually I’ll have a longer list).
I’m terrified that I could have after effects of Lyme disease or maybe still have it. BUT MOSTLY I’m terrified that I unknowingly passed it on to my 4 children. I often think that if I had not ever had Lyme disease my kids would all be healthy and not have issues. The guilt is unbearable.
I can’t wait till November 30th to at least ask some questions and get some answers from my son’s neurologist appt. I have more appts scheduled too so hopefully come 2018 I have some answers to this list of questions. I just started piecing this puzzle together after gathering past medical records and asking questions I’ve got us scheduled for specialists and appointments. Hoping to find answers so my kids and I have answers. Does any of the above sound similar to anyone else? If you’ve sit through my novel, Thanks, I hope one day we all find the answers to our medical mystery.
Tamara I wish you the best in your chronic illness journey. Hopeful you get to a diagnosis’s soon and that the doctors are able to help you along your journey. Never give up Advocating for yourself or your children.