Pain Awareness Month-Bellas mild Cp story
It’s September, which means Pain Awareness Month is in full swing. Pain awareness is something my Bella knows all too well. Bella has a mild form of spastic cerebral palsy. Yesterday we had multiple doctors appointments and one of those appointments was physical therapy.
while you may want to get involved and help educate people about the issues facing the community of other pain sufferers it can be surprisingly difficult to find meaningful ways to help — especially ones that aren’t too expensive, time-consuming or require you to be an expert in policy and advocacy strategy which I am trained in but that is for a different post.
Aside from telling friends or writing a Facebook status, what else can you do to support Pain Awareness Month? Every person with chronic pain deserves to have their voice heard so this is my way of getting our pain story out and for other to hear Bella's voice.
I am speaking up for her on her behalf. I ask that if you want to help others first start by sharing this post let Bella 10-year-old voice get heard. Then like and comment to help get this post ranked higher on the google spear. Lets let Bella know we all got her back.
I had her back yesterday I was there taking her to her doctor's visits and helping her deal with the challenge of missing her friends and teachers at school. I am there helping her catch up on her missed class assignments which we didn't get in her backpack. I am there pushing and being her biggest cheerleader. I am always there. Adam her father is there too but I took her to this appointment today just her and I. We had much needed one on one mommy daughter time and we even made the day kind of fun she had smoothies and I had coffee at Bigby. If you want to help you can send us your Bigby coupons for buy one get one our email is on the contact page. You can also donate gift cards to us for snacks and lunches for our appointments as people have asked how can we help others in pain.
Helping with the cost of gas to and from appointments and helping with food and snacks helps or even providing food and snacks helps. I had that idea while we were at Bigby knowing that hey this stuff is going to add up for 12 appointment visits. We are open to accepting gift cards just send us details and such in the contact page.
I'm even considering having a donate button that says buy me coffee on my page. I would look at it as a way to keep this website running that's another way to help spread awareness is by having your own website. The cost of this website is not much in fact it cost about 3 trips to BigBy and I keep paying for the website and running it because I want our pain to do some good in the world.
The goals of physical therapy are to decrease Bellas leg pains from the spasms she often gets that keep her up at night. Originally attending physical therapy to get a full assessment of her tightness of her legs and the strength of her arms we discovered that Bella foot is not flat but has a high arch and rotates so we are getting her ankle braces soon.
The doctors visits it does requires prior authorization on her insurance. Bella has united community health plan Medicaid and children's special health insurance. This ordeal is going to make us see the pain specialist that diagnosed Bella with cerebral palsy which is in Ann Arbor. We are hoping we can get the doctor to just fax over an approved letter to the insurance. Decreasing pain is what we are working on in the first 8 weeks of treatment.
The medically needed doctor's visits will require Bella to miss 12 days of school. Just for physical therapy. We also are doing speech and psychology which is another 8 weeks of treatment meaning 12 sessions meaning 12 days missed from school.
If you can do the math we are at 24 days missed of school if I have to drag these appointments out one after the next and space them out on different days which I am lucky that I can get all of these appointments set so they are back to back.
Yesterday, for example, we had speech set at 10:00 am and then we had psychology at 2:00 pm and then we had physical therapy at 3:00 pm. From 11:00 am until 2:00 pm we hung around the hospital which is where her appointments were at a rehabilitation hospital in Grand Rapids Michigan. A 45-minute drive from my home which means we had to use Medicaid transportation services to get us to and from. Our drop off time was 9:30 so we left our house at 8:30 am. We left the hospital to come back home at 4:30 pm.
I spent 20 dollars on lunch 10 for her and 10 for me. Thankfully the food at the hospital did not cost that much and they have daily specials. The cost of these appointments are covered by the insurance but we had to play a word game to make sure they matched Bella's diagnosis one miss word and it would have been denied. I am willing to play the word game with insurance in order to help decrease the leg pains for my daughter.
During the appointments in physical therapy, the physical therapist asked Bella what her pain levels get to when she is in pain. Level 10 sometimes I think it is even higher than that. She wakes up crying in pain often inconsolable and I have to watch her while I run a hot bath, get the heating pad and rub the knots out from her legs and feet.
Other times her legs are just tired from all of the runnings she does. Bella takes backflen to help decrease some of the pain and to allow her mussels to relax and help her sleep she also is given ib profin. The side effects of the Backflen is she sleeps so deeply she pees the bed we are working on waking her up at 12 to go pee and that seems to help with some of the bed wetting.
There are so many pieces to the pain puzzle which involved therapy and meds and exercises that those things keep us busy after school. I only have 4 hours with her at night I need to have some of this dealt with at the school however it not educational this is all medically needed. We do our best and she is not always in pain but when she is she makes us aware.
I am writing this post for Pain Awareness Month to help Bella and others like her. I myself have pains of my own from having gasteroparies but I wanted to share about Bella in this post to help people see that Bella looks like the typical normie child but at night she in secret away from others view does struggle with pain. This post goes out to those of us who struggle with pain in secret let's reach out and share our stories to offer hope for others.
Thank you for reading. I want to know do you deal with pain? how do you deal with the pains you have or your child have? Write in the comments below and let me know your story of pain. Until next time friends I pray you are pain free. If you want to donate and buy me a coffee or Bella some smoothies I email me at firstname.lastname@example.org
click the link below to show your support for pain suffers on your Facebook profile
You can also help by following the pain assocation websites
Another way to help is to shop for your cause. Wear a T-shirt, bracelet or pin that raises awareness of chronic pain and the condition you live with. Etsy features designers like Spoonspirations that make chronic illness-themed items. Many nonprofits also sell apparel, like the National Fibromyalgia Association, Reflex Sympathetic Dystrophy Syndrome Association, Global Genes, and National Fibromyalgia and Chronic Pain Association. The profits from these items go back to the cause, so it’s a win-win.
In order to help people understand the chronic pain patient’s perspective, we need to amplify the voices of the warriors who speak up.
For example by sharing Bellas story and my story online you are sharing a different prespective and view
Like, comment and share your friends post like you would a celebrity post.