Because of my chronic monsters, the upcoming “Miracle Day”(aka wedding) will require some special technology. I’ve been prepping for about a year, and have done some research to quiet my critters. Would you like to see some of the gear I’ve found?
Even though I am still uncertain how my body will react at the wedding and how long all of my issues (see my about page for specifics) will allow me to stay at the ceremony, having this “armor” makes me feel more ready to attempt this ‘impossible’ feat. I know everything will be in the red zone, but my sister is counting on putting eyes on me when she is at the alter. She needs me there, so these little gadgets are going to add minutes to my miracle- and some extra minutes are all we need, baby! A good friend of mine thesickdiva blog said she’s praying my endorphin’s will kick in and I’ll be there for an hour instead. That would be amazing! Thank you, Jenny!
Ear plugs– I have so many different kinds. I usually use the soft foam kind for comfort. PS, these come in many sound-blocking capacities. But for this special occasion, I’ve purchased Decubulz which have the highest NRR available. I have yet to mold and fit them, which will take help, and boiling water, so we’ll see if they work as well as advertised. I’ll let you know how they work out.
Headgear– Bose wireless sound canceling headset has been on my wishlist for a long time. They have been such a blessing since the holidays! (Thank you Aunt Darlene.) I don’t know how I ever lived without them. Before, I was using gunrange type headgear, and they were not only very tight and painful, but they didn’t offer much sound protection. The Bose are the best sound protection available, and much more comfortable resting on my neuropathic head and face. I like that I can wear them as needed, and then I can flip the switch on the side for the sound blocking feature before my head explodes. It helps turn down the pain and some of the fight or flight sensory overload symptoms. I wish it blocked out all sound, but they are a big improvement over any other headset I’ve tried.
Theraspecs Sunglasses– I did a great deal of research on migraine reducing shades before deciding. Many of my friends have prescription eye wear for light sensitivity, but a physically wearing trip to a new doctor plus lights being shone in my eyes for new specs was off the table for myself, though if you are reading this with headache disorders triggered by light, prescription shades is one of the options. I was relieved to find there are many kinds of shades to choose from. My friends said to look into Serengeti shades, sporting eyewear, and rose tinted lenses. I did. I soon found this company, Theraspecs, which was started by a woman whose severe migraines are brought on by light. She and her husband make lenses with several kinds of filters, (including FL41) and will even custom make your shades if you send in your favorite frames (winning!). Since getting mine from Theraspecs, I notice a big difference in screen brightness from my laptop, Kindle and phone. I’ve yet to try them outdoors, but I’ll be giving them a spin in a couple of evenings! My Aunt also got a pair of theraspecs custom made, so we will give you an update on head pain reduction. We were both very impressed with the level of communication from the company, and customer service.
Bride’s Maid Dress– We were told to pick our own dresses (with criteria). I absolutely love the one I found. As you can imagine, I have not purchased any (non-pajama) clothing for a very long time. I’m so excited to wear it! I haven’t worn makeup in quite a while, either and found some fab red lipstick that I hope will accentuate my pale…ehem porcelain complexion. (The sale price is not what I paid.) ASOS is one of my favorite online clothing shops for gifts and “lounge wear.” Here are one of my accessories that I’m excited about wearing as well; it’s both functional and fabulous. If anything else, I will be put-together on the outside! (wink)
Reclining Wheelchair– Such exciting news!!! Even though last week was one of the worst in a long time (that’s saying something folks!), this wheelchair was such an amazing gift to my life! I’m so stoked about this! Thank you for celebrating its arrival with me, and allowing me to share it with you all!!! My reclining wheelchair was not only approved by insurance, it was already delivered! Isn’t she pretty? We usually have to rent one, and now, we have one for keepsies. As I’ve shared here before, my Postural Othostatic Tachycardia Syndrome (POTS) only allows me to sit or stand upright for a couple short minutes before going into Pre-syncope (starting to get sick and pass out). But if I’m in a reclining position, my POTS will stay in check. That is a huge relief! If I am forced to be upright for more than I can tolerate, my health can go into a setback for a while. I know this wheelchair will be an awesome step forward on my journey, and hope it leads to great progression for my life! (If your insurance has not approved your chair, try Invacare on Ebay for new, inexpensive, high quality chairs with free shipping.)
Nurse/ home health aid– I’ve had a home health aid come every week for the last several months (game-changer), and she will be assisting me at the wedding. Because of her help, no one in my family will be distracted by me, and they can focus on my sister and the wonderful event
! A great relief to both me and my sister. When I told my sister my aid would bring me to her wedding, I could tell it lifted a weight off of her shoulders. This newer aid has never taken me out of the house, so I admit that I am anxious about that. My ex-husband is really the only person who was fully aware of all of my transport issues and needs when we would attempt to go to doctor’s appointments. I’m putting a lot of trust in her professional ability and experience with other patients. She hasn’t failed me yet!
Blood pressure cuff– This is just my boring reliable old blood pressure cuff from Walgreens. We got it way back in 2011 when my one monster (RSD) invited a whole crew of critters to the party. I don’t sit around measuring my BP for kicks, but we’ll bring it along in the car just in case.
Though I wish I had a temperature controlled, sound-proof bubble I could participate in the wedding through, I can only prepare so much. We’ve been planning for over a year, I’ve been in physical therapy for months, and I have every item to make my body as cooperative as it will get. If I had not gone through all I did this past year, I don’t know if I would be ready for this day. That is a ray of sunshine coming through these clouds because I love my sister more than anything.
Just as my sister is planning all of the details to make the day as beautiful and memorable as possible, I’m planning for a smooth event as well. We can’t approach it with fear. No day is perfect, but how we enter into it mentally can change the memory completely. For me, the truth is that it will be painful and frightening. I will have to recover for a while afterward. If I can go to be present for their vows between 10-20 minutes, that would be so incredible! It will be a triumph and so precious to be there supporting my sister, her soon to be wife and our families.
I’m so honored and privileged to be her maid of honor. It has been a joy to contribute to her wedding in my own ways. I have some little surprises for her and her bride for the day of, which I’m getting excited for. It has been very difficult, sometimes heartbreaking (for both of us) not to be involved like I would be, like I SHOULD be. That river runs deep for us both, but more importantly, so does our relationship. For the ceremony, I don’t know if anything could stop me from being there in any way I could be. She is my heart. Of everything that has gone on in my own life in the last few years, wedding planning has been such a bright light I am so grateful to be included in. See you on the flip side! Thank you for rolling along with me.
Get ready to be inspired. (Grab a tissue). Had to re-blog this:
My darling friend (codename Salarcon) is consistently more joyful than many of us put together. She has her struggles, as do all of us, but she has an incredible peace in the midst of those struggles, as do few of us.
She is also a Poetry Slam Goddess and host of a new YouTube poetry program, and her recent poem (below) is about joy — whatever the circumstances.
Life is short, my friends. Whether you are concerned about your orientation or you child’s, or falsely afraid that God does not love you or approve of you, or afraid you somehow do not deserve to be at the table with everyone else, please. You don’t have to do that to yourself.
It’s time to love yourself… hard.
Enjoy Salarcon’s poem… ❤
“I’ve got sunshine on a cloudy day
Whether it’s cold outside I’ve got the month of…”
View original post 381 more words
“No Pain, No Gain” -Jane Fonda. My sister and I were Jane’s leg warmer partners in crime and side cramps. My sister’s journey with Dyslexia told a different story about pain and gaining.
As my mother would begin Jane Fonda’s warm up on the VHS, my sister and I would be changing into our bathing suits over tights, scrunching up Dad’s long socks (they came up taller and on us looked like those leg warmers worn on the video- we thought). We would get into mom’s blue eye shadow until it was more like forehead shadow. Our hair in HIGH side pony tails mimicking our favorite backup Fonda “fly girls,” we were finally ready to show these ladies how it’s done!
This was so common in our home that we wore out the Jane Fonda video tape. My mother always laughs at this memory of us, yet my sister and I take our Jane Fonda VERY seriously- so no laughing people! We were little girls then, but Fonda and her hotshot posse’ of long-legged sweat band sporting 80’s workout divas made tiny me and my little sissy feel extra fierce.
Years later in school, my sweet little sister would not be feeling so fierce any more when she was the target of bullies. They called her: illiterate, moron, idiot, retarded, and more names I know she has buried deep and hopes to forget. She has a learning disability called Dyslexia. She is severely Dyslexic and she didn’t really catch onto reading until around the sixth grade. She thought reading would be her ticket to being “normal” and making friends. The better she could learn to read, the fewer panic attacks she would have when teachers would make her read aloud in front of class “for her own good.” And fewer tears she would cry because of nasty name-calling jerk wads.
She went through a whole lot of emotional pain on the playground, pain when she got any tests back, and pain in her bedroom alone after school- yes, she had pain… But my sister would tell you her GAIN had nothing to do with her pain. Her gain came from her time in drama class. She gained motivation to stay in school through High School performing arts programs. She gained trust back with her peers when she sang in the chorus. She gained confidence in herself when she was the lead in the school play. She gained independence when she put herself through college by winning talent competitions in scholarship pageants. She has represented organizations like Reading for the Blind and Dyslexic along with advocating for school arts programs as both made such an impact for her. And yes, in case you are wondering, the shy little girl who couldn’t read did graduate college. Boom shaka lacka. Hip roll Fonda!
She continues making gains every time she reads a word and each day she goes to work. She makes gains by proving her former teachers wrong, those bullies, those mean snotty classmates, tutors, and everyone who must have been so dumbstruck by her sparkle that they all acted like fools around her, I suppose.
It wasn’t in all the hardship that my lil’ sis found her fabulosity, it was in the moments like dancing in front of the television to Jane Fonda’s Workout video. Fonda fly girls for life xx.
This entry was in response to a Daily Prompt from WordPress’ Blogging site:
Do you agree with Jane Fonda’s favorite exercise motto, “no pain, no gain?”
www.whotalking.com for photo