This is my first blog, on my first website. A lot of fun firsts for me lately and I hope it lives up to the hype. If you read my “About Me” page you get the jist of it, of me.
What pushed me into starting this website? You find yourself asking.
Well, let me tell you. (Shortened version! LOL)
When I was pregnant with my daughter my body was not happy with all the extra hormones floating around and it made me pretty sick. Nauseous. Migraines. all, the, time. In short, I lost my job and thus, became a stay at home Mom because let’s face it. It’s pretty rare that any employer will hire an obviously pregnant Mom-to-be,,,, and, the cost of day-care for two kids, plus the cost of gas traveling to a job, etc…. It saved us money at the time, having me stay home with the kids. Thus began my stay at home mothers career. Plus, babysitting for some family.
When my youngest was around 8 years old I did start to look for a job “Back in the real world” but nothing panned out. I was getting pretty frustrated.
Then in November of 2020 I sustained a concussion that changed my life. (Granted it was my 5th or 6th concussion by then but I had no long lasting effects from the previous ones.) I was getting firewood to add to our outdoor wood burning furnace while my husband was hunting Whitetail deer. A block of firewood fell from the top of the pile, hitting me in the nose and breaking my nose. It didn’t even bleed but I heard a crack. (The MRI done later proved it had broken) Everything went downhill from there. Constant migraines, nausea, overly sensitive to lights and sounds. The Doctor told me to just stay in my bedroom, in the dark. NO screens, NO thinking what-so-ever! Staying in the dark, resting as much as possible for the next two weeks!
How’s that going to work!? I’m a MOM. I have kids. I have to get them up and dressed and off to school, and feed them, and all the other things a stay at home mom needs to be doing 24/7!?
So, I did what I could. I got up with my kids, got them off to school, did the bare minimum and got them off the school bus, fed snacks, got them started on their homework, did the bare minimum until my husband got home from work and he took over while I went to bed.
That was NOT enough. It has since become my #1 regret of all my after-concussion-care. I wish I would have reached out to someone for help so I could have followed those critical first directions to a T.
Who knows, maybe I’d be better off today if I could have been able to do just that.
Maybe I’d be no different. I’ll never know. So, I’m in the here and now. …. Starting, NOW.
After almost six years of battling Persistent Post Concussion Syndrome and ALL the super fun and fantastic symptoms that it delivers, I am STILL here. Yay!
After over four years of desperately searching out others like me, I FINALLY found my people! YES! Last month I was lucky enough to have been able to attend a Love Your Brain Foundation, TBI (Traumatic Brain Injury) Retreat. A week in the Rocky Mountains surrounded by a group of some of the kindest volunteers (Most of whom are TBI survivors themselves) and just,,,, finally meet other people like myself.
Not to mention that my husband was able to come along as my main caregiver and finally meet other caregivers, since he doesn’t know anyone else in his similar shoes also.
The week in whole was an eye-opening experience for us both.
I felt more relaxed than I’d felt in a long time. There was NO judging, no feeling of having to explain yourself or why you’re not feeling up to doing whatever is planned. Everyone got along great. There were lots of stories, crying, laughing. It was a beautiful form of release of all the pent up years of loneliness. At some points the feeling almost felt overwhelming, yet needed.
There were different groups meeting, that anyone could go join, to discuss different things.
One evening during our dinner they had the tables divided by groups. Paul went to the “Caregivers” table. While I went to the “Parents” table. I was with a group of Moms and of course, our kids were the topic of conversation. Which proved a good point. Having children and dealing with a TBI, raises some pretty great and empathetic kids. Which I feel is a good thing. My son, Garrett, is literally the sweetest young man. Now he’s 19 years old but 6 years ago when this all happened to me, and ever since, he’s been one of my biggest supporters. When I’m down with a bad migraine, he is usually the one running up and down the stairs bringing me fresh ice packs for my headache. He’s the one who takes care of my chickens and ducks if I can’t. He will literally run to the store and get ANYTHING I need. PRETTY sure if I, or my daughter Janina, asked he’d even go buy some tampons or anything.
Garrett is one of the best guys! He would make a perfect husband and father one day. Though,,,,, he’s a tad on the nerdy side (He knows that LOL) and working 3rd shift he’s either working or at home. VERY little chance of meeting a future spouse that way! He knows it. He does talk about wanting kids someday though. (YAY! LOL)
Anyway, back to it!! Us Moms were discussing this. Who knows how different our kids would be if they didn’t have to help take care of a parent with the issues we are plagued with? So, it is just one small positive thing to come from our suffering. It helped make our kids into the best possible version of themselves for the future. I’m thankful for that. (Though I’ll admit, some days finding ANYTHING to do with my PCS/TBI to be thankful for is a chore.)
Another day a group I decided to meet with was all about careers. I would still love to get back into “the real world” of working adults and contribute to society. (Too many people have lost this mindset and that’s sad.) A year ago I worked with a very kind woman from the state of WI to help find me a job I could hopefully excel at. She worked with me for three months and in the end, it was just depressing. I’m stuck.
What I learned in this group. Not much different. Several in the group commented their opinion that NO smart business owner/employer is going to hire a TBI survivor when that person can’t guarantee they can even make it to work on a set schedule.
Understand, we all agreed that we know they legally can’t ask if we have any disabilities, etc. Most of us agreed though, that morally, we can’t hide a fact like that and screw over a company that we want to keep on good terms. Just to have a job.
Some people were put on Disability, some, went on to create their OWN business of some type, Some on both. Which is awesome! They talked about finding what you are really good at and turning that into a form of income.
They asked me to give some input as to why I joined that group. (I was mostly quiet up until then, feeling REALLY out of place just being a stay at home mom)
So I talked. Embarrassed, as I almost always am in groups. UGH.
I told them my Doctor told me to go on disability but the state told me I can not. I was told I must have paid into SS for at least 5 years WITHIN the last 10 years. It doesn’t matter how many years I paid in BEFORE becoming a stay at home mom.
I also found out that I think I was the ONLY person there who never saw a Therapist to talk to about everything. I tried! I tried a lot! My Dr. put in a referral for me but I was told even WITH my shitty health insurance it would cost me $500 a session!! I canceled that appointment. Then another referral, but Bellin called me on that and told me they were too overbooked and they refused to even see me unless I first FAILED several psych medications first! THAT’S HORRIBLE! I don’t need to be medicated, I just need a professional to talk to! The group was shocked to hear this. They were excited to hear that I do like my herbs, making my lip balms, shampoo bars, lotions, homemade teas and tinctures, etc.
They were the one to make me think that maybe, just maybe, I might have a chance at creating something all my own. I will forever be thankful to them all for this.
Even though, as I’m still working on setting up my Etsy store and this website, I’m growling at them. LOL It is a VERY slow process for me.
I can’t look at a computer screen for more than an hour before I start a headache. (I’ve tried blue light glasses, but it doesn’t help enough.) So, I work on what I can then it sits until the next day.
By the end of the day my cognitive fatigue is much worse than any other day I’m NOT looking at a computer. So, I’m still trying to figure out how to make this easier for me.
I’m NOT giving up though! I keep playing the words in my head from all of my new friends. Encouraging me, keeping me going. I AM going to make this work.
Only, I’ll need all of YOUR help. Please.
I hope you like it, me, and keep following.
Have yourself a great day.
*Hugs* Sue
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