Well hey y’all! How’s life treating you or better yet how are you treating your life? Why do I ask such a question? It’s because @FinWhaleFan sent me a great list on resourcing activities in my State! That led me down the road to self esteem because when we get diagnosed with something that can be life threatening, it can take a hit, a very hard hit indeed! Although I no longer read self help books and trust me I have read a lot, my favorite remains the one someone suggested decades ago that’s entitled “Taming Your Gremlin” by Rick Carlson. If you can, pick yourself up a copy or see if you can borrow one from a library. If you like it, you might want to buy it. Of course I have digressed, did you expect anything less? ROFLOL. If you’re new, I am brain damaged both language centers took a direct hit not to mention my corpus callosum etc. and part of that comes out in my writing so my paragraph structure may not flow correctly and of course I don’t see it and I don’t have BH read over what I write every time. BH could probably have been an English teacher that we would have loved and hated at the same time. BH’s sales staff often told me about it back in the day.
Anyhow, back to self esteem! As mentioned this road is all @FinWhaleFan’s doing…and all because we PM each other. BH took a hit when we got the news that I’m back on the W/W list. BH incurred PTSD because of me hanging out in NCISU and was told every day for the 21 days I vasospasmed that I may not make it to the next day, the docs didn’t know. BH tells me that my favorite RNs were more positive but still honest, as was one of the Critical Care MD’s and a med student (both favorites as well) This is what was sent to me Virtual Events | Your Gateway to Virtual Events & Resources — Social Bridging NC which led down the rabbit hole of self esteem.
I found these Knowing you have a brain aneurysm may raise anxiety risk, other mental health conditions | American Heart Association and 5 Ways to Boost Your Self-Esteem When You’re Struggling With a Chronic Illness - Essence of Healing Counseling there’s also a plethora of articles on the BAF site. This is good https://www.hbasupport.org/post/top-tips-for-anxiety-around-living-with-a-long-term-health-condition. I may end up with this https://www.thebeefoundation.org/choosing-joy-thank-you-susan-hall/ it will link you to Susan Hall’s website which will link you to YouTube if you choose. It’s been out a couple of years so it may be available at your local library or perhaps you can borrow it through the library.
Because BH is the head cook and bottle washer in my life (not allowed to cook unsupervised) aka my Caregiver (Carer if you’re in the UK) I found this https://niekrofoundation.org/patient-caregiver-support/caregivers/looking-after-yourself/ and although this comes from aging, the caregiver issues are the same Taking Care of Yourself: Tips for Caregivers | National Institute on Aging. I especially like this one Care for the Caregiver: Learning Self-Love - AgingCare.com that has a lot of great suggestions for us all. I particularly centered on this quote “Aim to be defined by the positive forces in your life rather than be held back by the negative ones.”
When we discover we have a cerebral aneurysm whether by an incidental find or a rupture it can bring a plethora of issues up that have nothing to do with our diagnosis. We can be victims of trauma, abuse, neglect etc and if we haven’t dealt with those, then our aneurysm can be the straw that broke the camel’s back. If you are experiencing all of this, please tell your PCP who may be able to refer you to a good therapist, Psychiatrist, etc. Don’t bottle it all in, let others know the stress you’re experiencing. No one is in life alone if we but give healthy communication a chance. Take the risk!
Just in case you didn’t notice, there’s a recurrent theme of practicing mindfulness and I really like this magazine Mindfulness | Greater Good it’s all science based!
Now on to our welcomes!
@aromero132 is down in Texas and was treated endovascularly (apparently that’s not a word and I’m making it one). Amanda shares she was fine and suddenly she describes “it as some one shot her in her head.” She lets us know that she was not actually shot but it sure is a dang great description of a thunder clap headache! She remembers flying into the ED and the MD with his back turned to her said hello, she responded. The MD stopped everything and said “Oh, you are awake, usually people in your position are dead or unconscious”. Amanda also shares she has 3 girls and 4 grandkids.
@Sue is up in Ontario Canada. Her neurosurgeon has recommended a craniotomy after her aneurysm was discovered with a MRI for something else. She is working through whether or not to seek the recommended surgery. Suzanne also shares she is recently widowed and learning how to live life with her new reality.
@Wake is up in Illinois and has had 2 clips and coiling stent. Friend says he is not sleeping and going crazy after 7 surgeries. He shares he likes heavy metal and it drives his wife nuts.
@Lindi is also down in Texas and was coiled. The aneurysm was found 05/25, her endovascular procedure was on 06/25. So far she has had only sinus and ear issues, along with the inability to hold her head down while trying to read or look at her phone. Her neck will start to hurt but since she loves to read, her daughter bought her a stand off Amazon that she can use while sitting so she doesn’t have to look down. Other than that, Lindy reports she’s doing fine.
Thank you all for joining! We are very excited for you to become a part of us. We are a support group as you know and we do offer support best we can, there is also the need for you to support others as that’s how the group works. Easy smeasy! Please start a new topic under either the General or Support tab by clicking on the +Add New Topic box. Fill in everything, then click on the Create topic box. Don’t worry if you’ve accidentally put it in the wrong place, I will move it or one of the folks who help me moderate. If you have any difficulties navigating the site please reach out to me @Moltroub or those kind folks who make up @ModSupport Remember we cover many different time zones so you may need to be patient. I’m usually on in the mornings and ModSupport has to cover all of the Ben’s Friends Rare Disease Groups not to mention we all have rare diseases.
For everyone who has helped out others this week, you are nothing less than amazing! Thanks so much for your time and support! My goodness you’ve done us proud, Big Hugs! For those who read but didn’t offer any, please give a couple minutes paying it forward so to speak.
For our members up in Canada with the fires exceeding 300,000 hectares (741,000 acres) our thoughts and/or prayers are with you as well as those States who are having air quality issues due to smoke. Please stay safe, don’t ignore evacuation issues, it creates havoc for those who are fighting the fires to have to put their energy and resources into getting you safe (my great nephew taught me that when he was helping to fight fires in California)
Since I linked so many sites, I’ll not remind you to practice whatever relaxation breathing you do, stay hydrated, eat well and rest. I’ll just end it with this song https://youtu.be/0C58ttB2-Qg?is=kglnhM9NEJCu0w0j
Stay safe all y’all ( translates to everyone) be kind to yourself and others. See you in the topics!
), but the one takeaway I thought was great is to “make the decision right,” and not worry about “making the right decision.”