Every day, I put on nerve relief and muscle relief on and around the battery pack generator. It helps but yesterday, it shocked me! The tip of my first finger. I had to finish putting it on and it kept shocking me. I was shocked 4-5 times and one of them shocked BOTH the first finger and the second one. I was very surprised because it has never happened before. It shocked me just now when I was putting it on again. I have to use it because like I said it works. It’s Theraworx. You can buy it on Amazon. Yes, that is spelled right. I got the 5% lidocaine patches from my doctor. I wish they could prescribe 10% if there is one. It seems at first it works like the 4% but when I stopped using it and then needed it, it’s actually much stronger. But the whole point, the battery generator shocked me!
I wanted to show you my doggy best friend whose owners are my Aunt Mom and Uncle Dad. She knows my name. She stays by my side the entire time when I go over there and spend a few nights there. I like to get her squeaky toys because she pushes her nose on it to make it squeak and then she tears it apart. 😂😂 no worries, she doesn’t swallow them and we clean it up right away.
Neurosurgeon looked at my xray and said it was normal however, I don’t know why but he took another look at it and said the leads of the SCS have moved. The biggest thing is that it causes severe pain. Something is compressing my nerves or spine or something. I think the battery pack or generator is either the culprit of the compression or the leads are or both. They asked me if I wanted a revision or removal. After all the hell I have been through with the SCS, it’s definitely a removal. I’m so happy to get this thing out of me! Now, this isn’t exactly normal for SCS so don’t get discouraged. This is quite rare but all my life of medical problems, it’s always been rare. Anyway, I got to make an appointment to discuss this with Neurosurgeon and I’m assuming about the surgery to remove it and make sure I really want this. I’m going to ask him if the severe pain from the leads are the same symptoms as sciatica or the cause of degenerative changes. But he has said he’s just a surgeon which made me laugh when my mom told me. I wasn’t paying attention. I was very out of it that day. If he says anything about the SCS and pain, I’m going to quote him, “that doesn’t happen”. 🤣🤣 sorry, I can’t help it. I like f-ing with people.
I have found the best nerve relief and muscle relief products. Theraworx. It’s on Amazon (I’m obsessed) and it’s of huge help. It’s kind of a pain in the ass because you put it on, let it dry and repeat but it’s completely worth it. You can do it as many times as needed but give it time to work. It won’t take long. It dries fast and then you put it on again. It’s for everyone, not just for CRPSers and possible sciatica. I sent my mom the link to a sciatica brace because the one we ordered was a scam. I felt like that was cruel. Like, how could you but this brace is on Amazon (I told you I was obsessed) so it should be good. I’m still SMH, though. I’ll update when I see Neurosurgeon.
Oh! Rep still hasn’t said anything. I told him about the leads which he would respond but he didn’t. Either he’s really swamped or he’s giving me the silent treatment.
That’s that. I’m having to write all over again. I got a SCS ( spinal cord stimulator) which is a device with a rod in your spine and a generator in the back hip and it’s supposed to make the pain not go haywire. CRPS (complex regional pain syndrome) is the worst incurable pain (nerve) known to man and it’s called Suicide Disease. It’s incredibly painful. There’s no cure, research or treatment for CRPS. It’s definitely coming out.
it was great in the beginning! But all things must come to an end. The rep asked me if I believed that there was damage to the SCS. We were talking about that. He called the neurosurgeon because we couldn’t get an appointment and TA-DA, he got us in. After my parents bombarded the neurosurgeon with questions. I immediately started shutting down. I didn’t feel like it was my appointment anymore or if I was going to have any time to say something. Well, I wasn’t paying much attention but it seemed like my parents were done. I told him that I was feeling like the SCS was causing me more pain than usual with the rep standing off to the side nodding with support, Neurosurgeon said that doesn’t happen.Then that’s it. I don’t remember anything else. It’s possible I had an absence seizure since I do have epilepsy. I don’t remember leaving the room.
The thing that is bumming me the most is that Rep used to answer me right away.Lately, after that appointment, I hardly hear from him. He’s seen a little bit snappy in one of the messages. Maybe he’s just really swapped and kinda took it out on me for a minute. I’ll just not say anything and leave it in his hands.
Besides that, I have a caregiver who’s been nothing but of major help, my mother. Yes, I have felt like a burden but she says how can you be a burden when it’s not your fault. I try to remember that. She has her days where she’s exhausted from being a caregiver but she always gets back up and do the best damn job she can do. I love her and I don’t know what to do without her.
My health (both physical and mental) has been so insane these past 2-3 years. Autoimmune diseases, neurological issues, spine issues, endo, fibro, possibly lupus, spine surgery that didn't quite work not to mention panic disorder and bipolar 1. Everyday is a struggle, I'm really trying to do the best I can, one day at a time. But I feel like a failure, I'm trying to run an online business with very little help, and keep myself together. I need help for a lot of basic things like cleaning my house bc physically it's really hard. Now my mental health is acting up too and I'm coming down a manic and then mixed state. I feel like I'm deformed, like a failure, like I'm letting everyone down and I can't keep up, trapped, isolated. I'm overwhelmed and exhausted.
Hi, my name is Giftwhubbard. I'm here because I suffered a spinal cord injury and now live with a pretty high level of chronic pain, and am hoping to join some support groups so I can chat with others who can relate. Thanks.
Hi, my name is SusanJC8. I'm here because I received a spinal cord injury two years ago and the result is an ability to walk only very short distances due to pain. We are talking maybe 50 feet. I am having a hard time accepting this and hoped I could benefit from other people's experiences.
#ChronicIllness#AutismSpectrumDisorder#Stroke#Disorder#SpinalCordInjury#Undiagnosed#CognitiveDisorders Where to begin. I honestly feel like one of those people kicking a can down a lonely street. I saw the new primary & wouldn't you believe it he was "get him in get him out" mentality. He was pretty rude, didn't know what he was looking at,& told me it's transient. (yeah having steatorrhea with undue fatigue & urinary issues that lasted 18 months is a short term issue, you know what, there right I should just sit here & do nothing.) I've noticed a pattern male doctors have this pride of there's nothing wrong with you just sit there & though it out. Honestly that's what I want to do because no one else cares... Where as the females actually have a tendency to care. I don't know what it is I really don't. But with that aside, I'm done with doctors. There you happy now? I have a physical therapist who has here own attitude problem & is determined to not only get nosey with my doctors but diagnose an fnd issue. Well I have no choice but to agree with her. But, 18 months has done nothing to help the posture so there's that. Now, I'm doing a full vitamin panel against this doctors will (I'm just a burden.) I told him insurance would cover this test completely & that I had a chat with insurance & they said it's covered. Oh, I did complain about my problems porencephaly, laryngocele, spinal cervical degradation, mildly low Igm etc. She recommended a disability coordinator for this mess but now that I don't have a doctor anymore what can we do?
You know as a kid I always wanted to have friends so that I could learn to be normal...well I never got that opportunity, sad, but what can you do? I used to be envious of not getting a diagnosis so as to find my village. That has changed ever since the porencephaly diagnosis in December of last year. Now I don't care so much anymore. I'm uncertain if we will find an issue with my vitamins. I can't wait to come into physical therapy tomorrow & be told your doing this on purpose, knock it off! What a world we live in oh well. My life has gone up in flames because not only do I have to work on my own issues but I have to work on other peoples attitudes.
Several years ago, I was having coffee with a friend at a local coffee shop. As always, we started our conversation with some laughter before he began sharing about a resent encounter he had while going about his daily activities in the community. It seems he had struck up a dialogue with someone on the subject of disabilities and they thought to ask him, “Wouldn’t you want to be normal?”
That’s when my friend revealed something that I had never really contemplated before in the deeper sense. He told the person, “I am normal. This is the way I was born and have always been.”
Born with Cerebral Palsy, my friend had no other life experience other than the mobility differences he grew up with since his birth. As far as he was concerned, this was his normal and the way he was meant to be. For him, God had created him in this body and he wouldn’t want to be like any-body else.
I couldn’t argue with him. Who was I to say he was meant to be any different? At the same time, I was confronted with a paradox of my own embodiment. Unlike my friend, I was not born with the paralysis that I have in my body today. For the first 15 years of my life I had a body with relatively normal physical abilities until a car crash caused a spinal cord injury resulting in quadriplegia. And I don’t believe God intended my car crash to necessarily happen causing my injuries, either.
So was my friend then not considered disabled while I was?
Is my disability a blessing or a curse? I was up late with that question and couldn’t sleep after hearing Dr. Amy Kenny speak at the Creative Justice Conference. She brought up so many great truths and points regarding disabilities and life. But in my mind, they seemed overcasted by her continual focus of being created disabled while emphasizing the nuance of being disabled in her identity as apposed to having a disability as part of who she is. She would say, “I am disabled. I am not a person ‘with‘ a disability.”
I wasn’t created with my disability, though. At least not with the paralyzed body I have lived with since I was 15 years old. And I don’t believe God orchestrated my car accident that resulted in my spinal cord injury, either. The body God intended me to be created in was fully able in the physical sense of walking and functioning without the challenges of the paralysis I’ve had to endure for the last 3 decades and continue to experience today.
So with Amy Kenny’s emphasis on how being disabled is defined with the meaning of being blessed within her created identity, I struggled with the deeper question within myself, is my disability a blessing or curse?
The Jewish Rabbi in ‘Fiddler on the Roof‘ quite truthfully said that there is a blessing in everything. The nature of our humanity, no matter what struggles and sufferings we are enduring, is rooted in an identity that reflects God’s character and presence everywhere.
In the very beginnings of creation, the word God used for blessing was the Hebrew word “Baruch“. (Gen. 2:3) While it was especially spoken of over the Sabbath, the same blessing was given over all creation. Repeatedly, he would speak the words… “And it was good.”
Reflecting that same characteristic of God, Dr. Nathan Lopes Cardozo, a Jewish scholar, also shares, “How wise were the sages of Israel when they instituted the custom of making a blessing on almost anything, whether it is eating, drinking, observing natural phenomena, or smelling extravagant aromas. They depicted all these activities as nothing less than totally miraculous.”
Blessings are not the riches of good health, accumulated wealth, or recognized successes. It is not in finding your healing or getting rid of pain and anguish. It is in finding the miraculous in everything that is a part of life both in physicality and experience. Or more meaningfully, it is in recognizing God’s love and presence within every given moment in time — we do not possess blessings; we submit to our relationship with them in God’s revealing.
As my friend Dick pointed out in conversation this past week, the disabilities I experience do not limit the ways God reveals his blessings through the experiences I face — and for sure, it is my friends who truly reveal God’s presence and goodness around me, too.
I also love the way Maya Angelou describes it when she wrote:
I believed that there was a God because I was told it by my grandmother and later by other adults. But when I found that I knew not only that there was a God but that I was a child of God, when I understood that, when I comprehended that, more than that, when I internalized that, ingested that, I became courageous.
Ramsey, K.J.. The Lord Is My Courage (p. 5). Zondervan. Kindle Edition.
When we find the disabilities in our life, we experience the blessings from them shaping our identity not because of them, but because we begin to live with them courageously, mercifully, gracefully, and lovingly for God’s revealing presence being at work and present in our lives and in the lives of those around us. As the old saying goes, we are blessed to be a blessing.
My name is Erik and I grew up in Calgary and have been in a wheelchair since a motor vehicle accident in April 1994 resulting in a spinal cord injury at my C4/5 and T4 vertebra. My wife, Bonnie, is also in a wheelchair due to a spinal cord injury at her C1/2 vertebra in April of 1992.
2020 – 2023 has brought a number of changes to my health and life. It has resulted in a deeper connection to a desired conversation in what it means to live with a disability, find dignity in my identity, and see hope for the future.