Chiari Online Support Group

Thank you, I'm NEW 😇

I’ve known I’ve had some illness, & my children also, there was no name for it then. Now it has a name, with a lot of faces. I am a mom of 7 boys. 1, just had his 3rd Sick baby on April 27, 2020. I’ve held him for 5 minutes since birth. He is diagnosed with PIERRE ROBIN’S SYNDROME, so I pray he lives a happy little life. I’ve had no one to talk to about this, it just sits in my mind daily. I want to be mad at my son, because he knows we have Arnold Chiari, and his first girl has high fevers, loss of hair, very anxious at 4 & 5 years till today. The 4 year old boy, almost 5, still wears a diaper, cannot speak very well at all. Now Sawyer, a baby with a cleft palate that affects his ears, etc. Has a feeding tube, his Specialists are in Seattle, as a mom I’m annoyed, I’m stressed, I was watching the kids while they were coming to Tacoma, & my son doesn’t want me stressed out, so he doesn’t tell me everything. Which makes my stress worse, than if I was told the Surgeries, etc. NEEDED. He thinks I will have another stroke. May 11, 2018 at 0600am, I fainted while driving to the corner store, from dehydration & my Recalled TAKATA AIRBAG EXPLODED & burst into a Flash Fire. That’s the day they found out why my whole life, I have had High fevers, allergic to sodium, among, many many things. 13 pages to be exact. I deal with G.I. Issues alot. I’ve thrown up so many times in my lif, I couldn’t even count, my dad once thought I was Anorexic & using drugs, because I can go days without eating, and not lose a pound. I know this is long, but I really needed an outlet for my suppression.
I have the Conquer Chiari book, which is okay, but the Neurosurgeon I went to refused to do a surgery, since it’s so dangerous, he was kind enough, to NOT make me a Guinea pig. I have about 100 essential oils that I try to use daily, but with this Scoliosis, some days I just can’t move. And explaining things to people or asking for Help, is a big problem for me. My mom died when I was 12, so I was raised by Green Berets. I was taught to do for myself, no one will help, and it’s emblazoned in my mind. I was once in Oxycontin 80sx4 a day, fentanyl patches, dilaudid, etc. That medicine has an Ingredient that I am Intolerant to, so I had to stop taking it. I recently restarted to grow CBD, & medical marijuana. I have 2+ years of healing, on top of COPD, etc. A lot of injuries, but this brain injury is healing, very very slow. I have an ADA, dog to help, as well as 4 Buff Orpington Chickens, 12 weeks old, & they ALL, really help me relax. So does quiet. I can’t stand a lot of noise, chaos, etc. I’m not as jumpy as I was. The 4th of July is really bad for me. I used to love it, now I loathe it. My husband has been a massive help. He had caregiver burn out last year, and almost ended his life. He was held for 2 weeks. He needs support also, but I think he gets his from Church & his friends. I don’t have friends, or family up here, other than the kids, which are Millenials, need I say more about that generation. I also am going through Menopause, which is personal, but it affects how I feel. I hope today, starts a new life for me, getting this off my chest & mind. Talking to people who know how I feel, and I may not look sick, but I am. Everyday is different, I never know how to plan tomorrow, because every tomorrow is different. I do all my shopping Online, I don’t like to be in a car, I find myself staring at the airbag. But now that traffic in Tacoma is better since the Covid19, it’s not as bad. The only place I go is to my doctor once a month, and home.
My husband got COVID19 IN March, he works at the Port of Tacoma, caught it from a China Ship. And now I’ve been dealing with Covid, on top of trying to heal. This has made me very clumsy, lights are so bright. Very tired alot. I had the Frostbite on my feet & a measles\pox rash since. I tried Calamine lotion & was throwing up the next day, due to the ingredients I am allergic \intolerant to. Thankfully it didn’t turn to Pneumonia. Our symptoms were totally different. Still cannot walk far without feeling faint. But it is a Disease. If anyone can give me any suggestions how to feel better, what to do, take, I am at that point of needing some guidance. Or I would not be here sharing my life with you. If you made it this far, thank you. I hope everyone has a blessed day. :innocent:

Welcome, JennyAnn!

You certainly have a lot of stuff going on in your life, don’t you? We’re glad that you managed to find us, even thought this isn’t the kind of club people love having to join!

So I’m sure I’m not the only one who’s wondering about the main plot of your Chiari story: how long did it take for them to figure out what the problem was, and how long ago was that? So the surgeon won’t do surgery. Would you consider it if it were offered?

You’ve obviously figured out how to post here, and thank you for the introduction! I’m sure you have questions. We’ve found that you get the most and best responses if your posts contain only one question, or a couple of related questions. Then just do more posts!

We’re glad you’re here, and I hope you will be too.

Seenie from ModSupport

1 Like