hankrules2011

A polymath rambling about virtually anything

Posts Tagged ‘pain’

Some Quotes of Mine

Posted by Scott Holstad on December 19, 2021

Excerpt from the Pittsburgh Quarterly (1993)

Excerpt from Street Poems (1991)

Excerpt from Shadows Before The Maiming (1999)

Excerpt from The Napalmed Soul (1999)

Excerpt from Shadows Before The Maiming (1999)

Excerpt from Cells (2004)

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An Asheville Vacation – Photos

Posted by Scott Holstad on September 3, 2019

Hi. We rarely get to take vacations and especially with my health disintegrating over the past year and a half especially, let alone the past four plus years, it’s just very hard for me to travel. I mean physically painful. But we had a chance to take a few days and go somewhere and we never get to take vacations and frankly, this may be the last one we get to take, and Gretchen really deserved one after a hellish year and a half for her, so we debated between St Simons Island, my former home, or Asheville, an eclectic little place with great B&Bs that we really love. Gretchen chose Asheville. I actually didn’t want to go very much because I knew it would be grueling, but again, Gretchen deserved it, so I thought any sacrifice would be well worth it. And it was grueling, incredibly so. It took me a week to recover upon our return.

Anyway, I don’t have the time, energy, stamina or ability to write a full, comprehensive blog post, but while I didn’t take a million pics, I did get some decent ones, so this blog will basically be a photo blog post. I may follow up with a second one in the near future with some additional photos. I hope you all are doing well out there. If you’ve contacted me and not gotten a response, it’s truly not personal. I just have a ton on my plate and small windows of opportunity most days to get anything done.

 

Scott & Gretchen’s Asheville 2019 Vacation — Photos

 

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Good “Pain” Article: “25 ‘Scary’ Side Effects of Chronic Pain We Don’t Talk About”

Posted by Scott Holstad on April 16, 2019

I subscribe to a health e-zine some of you may know: The Mighty. It tends to focus on areas such as cancer, mental illness, disability, chronic pain, chronic conditions, rare diseases and many more topics. I have several primary categories I read it for.

Today I found an article there that I really felt like I could seriously relate to. As many of you know, I’ve been having to deal with, among other things, an increasing number of diseases, disorders, and conditions that result in chronic pain for the past decade, foremost of which is Trigeminal Neuralgia Type 2 — but there are many others. And just like with other health categories, The Mighty often comes through with a really relevant article, and I thought this one on chronic pain was good today. Entitled “25 ‘Scary’ Side Effects of Chronic Pain We Don’t Talk About,” I can relate to many of these, and I could add many more of my own. I thought about just putting a link to the article here, but thought readers might not be inclined to click on it, so with apologies to The Mighty, in addition to the link, I’m going to re-post the entire (short) article here for you to read. I welcome comments. Thanks.

Paige Wyant authored this.

 

_________________________________________________________________________________________________________________________________________________________pain

As those who live with it know, chronic pain can result in so many more symptoms and side effects than “just” pain. Pain conditions can have an impact on just about every part of your life, thus provoking a wide range of emotions.

Living with a chronic, unpredictable condition that is tough to manage can naturally affect your mental and emotional health – and one of the most common side effects pain warriors experience is fear. Many may understandably feel scared and anxious about their health, and worry about what their future might look like.

To help others better understand why those with pain conditions might struggle with feelings of fear, we asked our Mighty community to share a “scary” side effect of chronic pain they experience, and how they cope with it. If the following sound familiar to you, know you’re not alone.

Here’s what our community shared with us:

  1. You get so used to being in pain you don’t always have a firm grasp on what’s serious pain anymore. I just got a stress fracture in a new surgical area but I never felt the pain was high enough to be concerned over. Thankfully I’ve learned over the years to err on the side of caution and check with my doctors more often than I’d personally prefer. But every time it turns out to be something serious, it drives home the fact that to me… that serious problem presented as only minor pain.” – Amber R.
  2. If I’m this sick and have this many complications at at 29 years old, what will 39…49… 59 look like for me? It’s scary.” – Stephanie B.
  3. The toll it can take on my overall mental health. In the middle of a flare, days can blend together and I start feeling pretty depressed. I have to be extra intentional about interacting with others and getting outside of my head.” – Laura F.chronic pain, 
  4. The fact that no one can see what I’m going through, and that it will never go away. Pain caused by central nervous system disorders can’t be seen, there’s no evidence, so the only person who knows what I’m going through is me. That isolation scares me.” – Amy C.
  5. Unknowingly lashing out at loved ones and friends when I’m in a pain flare. I don’t even know I’m doing it at the time, and when all is said and done I’ve usually hurt someone’s feelings. Relationships can suffer because of pain.” – Kathryn M.
  6. CollapsingI hate it. It just happens in a flash and I can’t always feel it coming first. My biggest fear happened recently – my pain surged, my legs collapsed, and I fell flat on my butt in a crowded room. I have never been so embarrassed.” – Katelyn I.
  7. There are times when I cannot get out of bed. I can barely move at all, including my jaw to be able to eat or take meds. To cope, I focus on what I need to do to improve my situation. I slowly do gentle stretching exercises starting with my fingers and working to other joints. When I’m able to move enough, I get a protein shake from the mini fridge next to my bed and drink it through a straw, which I keep on my nightstand. Usually by that time I am able to open my jaw enough to take medications. Then I take deep breaths and remind myself the symptoms are temporary while I wait for the meds to kick in.” – Jackie R.
  8. Trying to keep my job for the health benefits when I can barely function.” – Ceil B.
  9. The financial repercussions. Not being able to work full-time, plus medical expenses and raising three girls on my husband’s salary is scary. I don’t know how people do it. I’m not depressed – I’ve been there – I know what it is, but some days I feel like they’d all be better off without the burden of my health issues. It’s just exhausting, and frustrating, and infuriating… all the time.” – Jen M.S.
  10. Forgetting for that split second that you can no longer accomplish a certain natural action of your body, and making it hurt worse. The forgetting of some things is very scary, very. I think our minds need to over compensate in other areas, so we simply become forgetful. For me, very very scary, especially at first. And looking back and realizing things that occurred before I was diagnosed were signals. Scary stuff.” – Sky C.
  11. Wondering if this is the way it will be forever or if this is only the tip of the iceberg and it will get worse. Is my 10 today the same as my 10 next month?” – Sarah E.
  12. My memory loss. Ever since I was diagnosed with fibromyalgia, my memory has been getting progressively worse. I’ll forget what I’m doing as I’m doing them. I’ll forget what I’m saying mid sentence. It’s scary because I’m 18. It shouldn’t be this way. I cope by writing everything that is important down and making sure that I’ve got notes and lists of everything.” – Abi S.
  13. Not being able to be the mom I want to be. Feeling like I’m not enough for my kids physically, emotionally, or financially. I’m not just a single mom but a solo mom to my youngest since his ‘father’ isn’t involved at all. And I’m the primary parent to my oldest.” – Sarah N.M.
  14. The doctors’ inability to help me manage it. There are so many laws governing what pain medicines can be given and for how long that it’s almost impossible to get effective pain management. It seems like doctors are now trained to assume everyone (especially those with relatively invisible illnesses like EDS) is seeking pain meds for an addiction. This results in an environment that discourages those who have legitimate pain from asking for the help they need. I’m literally terrified to ask for pain medicine, and usually my husband has to speak up for me or encourage me to seek the help I need.” – LeAnn H.
  15. Suicidal thoughts. Before the pain I loved life and the future but now I’m scared of it all driving me into some pretty dark places. Spending time cuddling with the kids and cats helps temporarily.” – Shayla F.W.
  16. Symptoms that mimic stroke or heart attack. I have lost feeling on the entire left side of my body, lost my ability to speak, and also had severe chest pain due to the various chronic conditions I have. It is always difficult to decide if I need to go to the emergency room, or if my symptoms are ‘normal.’” – Lisabeth B.D.P.
  17. Fear of the unknown for me. My pain changes day to day with EDS and has gotten significantly worse while moving to more and more joints and organs of my body over the last few years alone. I fear not knowing how much pain there will be in 10 or 20 years, when at 30 I’m already not sure what tomorrow’s pain will look like. I have to remind myself every day that God is in control and I only need to take things one day at a time.” – Meg S.
  18. When I get a different answer every time I go to the doctors of what is exactly wrong.” – Samantha K.
  19. “The times when I’m incoherent and on the verge of losing consciousness due to how severe my illnesses are. I purposefully avoid medications that alter my mental state because they cause me such great anxiety, but, when I am in a long bout of severe pain, my mind and body can no longer handle it and so I succumb to being unconscious and it is terrifying. Waking up and not knowing where you are or what happened. How long you were out. I cope by staying away from social situations and staying home so if I do pass out I’m in a safe environment and less embarrassed.” – Caitlin M.
  20. Feeling like I’ll never reach my potential because the pain limits me more than I want to admit.” – Jacqueline B.
  21. Applying for SSD and getting denied, after giving 30 years in service to this country in the Corps and government agencies. Now a SSA bureaucrat tells me I’m not disabled enough. Financial ruin because I can barely get out of bed in the morning due to the pain. As a single parent, just trying to grocery shop is something I have to mentally gear up for for hours because I dread the pain. I feel deserted by friends, family and my government. Literally don’t know where to turn. That’s my scary…” – Jim R.
  22. Making plans and not knowing if you’ll be able to come through. The feeling of letting people down can be as just as bad as the pain itself, knowing others are counting on you… but you just push through and pray you don’t collapse for good.” – Erica F.
  23. I never know what I’m able to do. I can be OK one day trying to catch up on all that I’ve slacked on. Then be completely debilitated crying for two weeks.” – Nikki D.
  24. Watching the symptoms evolve in our daughter is by far the scariest and hardest thing about this condition for me. I know exactly what’s she’s in for and I can only pray that early diagnosis will give her an easier future.” – Crystal F.
  25. The worst part of my Ehlers-Danlos syndrome and all the other things that seem to come with it is guilt. Mostly, I feel guilty of the toll this has brought to my family. The guilt doesn’t seem to end there though. It trickles into every aspect of life itself. Guilt of the day going by with nothing productive done. Guilt that I’m not the mom and wife I used to be. Guilt that my family isn’t nourished with healthy meals because I haven’t been able to cook for so long. Guilt that my children are showing the exact same symptoms of this genetic illness. Guilt that my brother [died by] suicide over this same illness. Guilt that we didn’t have answers sooner. The list could go on and on. Chronic illness never ends, not even if we are tired and are begging for it to go away. The only way I know how to deal with it, is to take one day at a time. Every day I try and remain hopeful and remind myself that I’m not the only one fighting chronic illness and every day I just try and do what I can.” – Melissa D.

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A Review of A New Earth

Posted by Scott Holstad on September 1, 2016

A New Earth: Awakening to Your Life's PurposeA New Earth: Awakening to Your Life’s Purpose by Eckhart Tolle
My rating: 3 of 5 stars

Eckhart Tolle’s A New Earth is an interesting New Age spiritual enlightenment book marrying eastern and western religious traditions and beliefs and focusing on a couple of core areas: the ego and pain. Tolle spends the first half of the book discussing the ego as it relates to humanity, to identity, to its many different “faces,” and then ends this discussion with a section titled “Incontrovertible Proof of Immortality,” which I hope is in jest, because it’s anything but that to me. The book then transitions into discussing pain, as in emotions and the ego up front, followed by pain and the body and later, breaking free of the “pain-body.” Later chapters discuss finding out who you really are, falling below and rising above thought, inner body awareness, and the book culminates in an awakening of an inner purpose.

All in all, not too bad. But also, not much new here either. We’ve seen some of this stuff before. And really, not my usual cup of tea, I’m the first to admit. I’ve read western theology, philosophy from most eras (the existentialists remain my favorite), and some eastern spirituality, and I’ve gotten the least out of the latter thus far in my life. I’ve had the most trouble with the first, but I understand it the most because I was raised in that tradition. That doesn’t mean I easily accept it; I don’t. It just means I understand it. I also understand many philosophers throughout history, or should I say western philosophers, to be candid. I haven’t always understood the eastern mystics. Now, Tolle is not a mystic, nor would he claim to be. Indeed, as far as I’m concerned, he’s Michael Singer-lite. Singer’s book, The Untethered Soul, which was published in 2007 and which has profoundly influenced many people around the world, seems to me to be a similar work, with a similar message, but a deeper one, a little more thoughtful. In my review of that work of about a year ago, I wrote that

“Singer has some interesting concepts. He wants people to stop suffering, to be free, to find their consciousness, to become self aware, to attain true enlightenment. In that regard, it’s largely an Eastern religious book, although Singer tries to “Westernize” it by mentioning Jesus (and other spiritual leaders) throughout the book. He begins with the voice in your head that is always talking to you, your own, always second-guessing you, offering you advice, often wrong, etc. He writes that if the person behind this voice were on the sofa beside you, you would kick him out in a heartbeat, thinking him crazy. Not a bad point.”

So how is that similar? Simple. Tolle is constantly name-dropping spiritual leaders from different faiths, most especially Jesus. Tolle wants us to be free of our pain, to overcome our ego’s boundaries, meet the pain-body, and break free. Regarding the voice on the sofa, that’s merely the ego. Simple. Tolle is Singer-lite. But while Tolle’s book is an easy read, see what I wrote about Singer’s:

“The book, while small and apparently easy to understand for many, seems fairly heavy to me. Perhaps that’s because I’m stupid, although I’ve read an awful lot of philosophy over the years, but there’s an awful lot of advice here, some of it quite good when you can follow it. And if I were to follow it, I’d have to read this book some five or six times to just be able to even try to follow all of the advice he gives. I can’t do it with one reading. I tried out some of the things in the early chapters and it’s quite difficult.”

In fairness to Tolle, his book was published first, in 2005. So perhaps it’s fair to speculate that it was Singer who read Tolle and took his work, adapted it, and made it deeper, stronger, more informed. Who knows? But in any event, the two books are suspiciously alike, Singer’s deeper and more difficult to digest and understand. It seems to me that if you read one of them, you certainly don’t need to read both. There’s a great deal of redundancy. I would choose Singer. Is this a bad book? No. Is it groundbreaking? No. Is it the best of its type? Absolutely not. Is it worth reading? Perhaps. Maybe. If you enjoy such books, then I guess I would recommend it. It couldn’t hurt to read it and you might learn some interesting things that would benefit you. And by all means, I’m obviously no expert on the subject. If this is your field or your area of interest, research the book and read other reviews. You might find that you’ll really like the book, even though it didn’t do much for me. Three stars. Cautiously recommended.

View all my reviews

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Letter to People Who Think Chronic Pain Isn’t That Bad | The Mighty

Posted by Scott Holstad on April 20, 2016

A letter to people who don’t understand chronic pain and think it’s “not that bad.”

Source: Letter to People Who Think Chronic Pain Isn’t That Bad | The Mighty

 

This is a really good article. Not the best I’ve ever read, but really good. It does a good job at trying to explain the problem people with severe chronic pain have in trying to live with. My wife found it and shared it with me and I then shared it with a number of Trigeminal Neuralgia support boards I’m a member of online and the response was overwhelming. Many dozens of people “liked” this article, many dozens of people shared this article, and there were a number of comments too. Some of those commenting said they thought this article might help their friends or family understand where they were coming from. Maybe. Maybe not. Still, if you read this and understand anything from it, take anything away at all, it will be much appreciated. I have several major chronic pain-producing illnesses, disorders, and problems in general, surrounding my face, head, and back. The worst is Trigeminal Neuralgia. I have TN Type 2. Only about 5,000 people in America have it, so it’s very rare and as a result, is not well understood or easily treatable. That makes it difficult for me to adequately describe my situation to anyone, let alone my doctors. Sometimes the doctors I meet have never even heard of TN Type 2. That’s when it becomes discouraging. But whatever the case, I thought this article was at least a 7-8 out of 10 and worthy of sharing and posting myself. I hope you’ll read it and if so, I hope you’ll get something out of it. Cheers!

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CT Myleogram and Emergency Procedure

Posted by Scott Holstad on February 13, 2016

I’ve had a rough time of it lately, especially the past few days. A couple of weeks ago, I somehow injured my back. It locked up and I had incredible back pain to go along with my very severe head pain. I went to my orthopedist, had a lot of x-rays taken, was told I hadn’t fractured my back (good), but that my degenerative disk disease had gotten a lot worse. That my bottom disk had effectively disintegrated and it was largely just bone on bone now and that was why I was hearing all of the clicking and grating sounds when I moved, and why I felt my spine shifting when I moved. The disk above it wasn’t much better and together, they couldn’t have been “much worse.” My doctor decided to send me to have a procedure at a surgery center called a “CT Myleogram,” which I had never heard of before and which didn’t sound like a big deal. After all, I had had a number of CT scans, so no biggie, right?

Well, when I got home and did some research, I found out what these procedures were, to a certain degree, and they were a little more involved than that. They were basically like reverse spinal taps, where instead of inserting a needle into your spine and removing spinal fluid, they’re inserting a needle into your spine and injecting contrasting fluid into it so that they can take moving x-rays and CT scans so they can detect nerve damage and other types of damage regular x-rays can’t see. No anesthesia, of course. And I had just had a spinal tap last month. So, yay. This was last Monday. They called me Tuesday and scheduled me for Wednesday, a few days ago.

My wife took me in and dropped me off. She’s had to take me to so many procedures lately and has had to wait that it’s just gotten old and she’s worried about losing her job, so she just wants to drop me off and pick me up when she’s allowed and I was supposed to wait in Recovery for 2-4 hours after the procedure before she could pick me up. I had the procedure and it wasn’t that bad. It didn’t last as long as a normal spinal tap, although with the x-rays and CT scan, the entire process made it last much longer, of course. And I only had to wait after for a couple of hours or so. They warned me several times about something called a “spinal headache” and said it could be very severe. I basically laughed it off because with my Trigeminal Neuralgia, tension headaches, severe migraines, and cluster headaches, how could it possibly be that severe? Even if I got it, which I didn’t think I would. Because you basically got it from leaking spinal fluid from a puncture that wasn’t healing and it wouldn’t be healing because you stood too much and didn’t lie down enough and I planned to lie down. But I didn’t. I thought I did, but I didn’t. I sat at the dining room table to eat a late lunch when I got home. I sat at my computer to check email, etc, after that. I laid down for a bit, but then I stood for awhile to do dishes. I laid down some more. Oh, I felt pretty good, by the way. I felt fine. I sat again to have dinner. But by then, I was starting to get, yes, a headache. I assumed, however, it was my usual TN acting up and didn’t really think anything of it. I took my usual medications, but by late afternoon, I had an increasingly severe headache that was starting to get very, very bad. I went to bed with a bad headache and got virtually no sleep. By Thursday morning, it was brutal. I got no sleep, like I said. My right eye socket felt dead. The right side of my head was on fire. The back of my head felt like it had been hit by a machine gun. My forehead hurt, so did my cheek and jaw. My ear lobe felt numb, so did my teeth and tongue. My temple was killing me! I wanted to die. And my back was hurting from my procedure. This was probably the worst pain of my life. On a 1-10 scale, this was easily a 15. Throughout the day, I took 6 Tx, 8 Ex, 2 Nx, 14 Ax, a Px, and 2 Mx. I started feeling better during mid-afternoon but started getting worse again before dinner. My pain level got down to maybe a 10/10, but that didn’t last long. And this got worse! I didn’t know what to do! My pain level reached a 17 out 10, if that’s even possible! Ungodly! Worst ever. Finally around 9 pm Thursday, I called the surgery center and got patched through to a live doctor. She said I had two options. One, I could go to the ER, but Gretchen had taken a sleeping pill and was going to bed and I couldn’t drive. Two, I could stay up and take lots of anti-inflammatories and drink lots of caffeine and go back to the surgery center in the morning to get an emergency “blood patch” procedure, where they drain a lot of blood from your arm and then inject it through one of two needles inserted into your spine, like a reverse spinal tap, similar to what I had two days previously. That’s two reverse spinal taps in three days. That’s harsh. And that’s what I did. I stayed up all night drinking coffee and Coke Zero and taking what pain pills I could and when Gretchen got up, this doctor called me and told me they were expecting me at the surgery center, so Gretchen took me there. When I went into the operating room, they had five people in there: the doctor to handle the two needles, the technician to operate the x-ray machine, which I got to watch live, the person to handle my blood and its needle/IV, and two people to massage me, one my arms above my head, one my legs, I guess in an effort to comfort me because of my pain and discomfort level. It was almost funny, as I’ve never had that happen to me before, but it was oddly comforting. This procedure lasted about an hour and hurt like a fucking bitch! Holy shit, it hurt! The doctor dug those needles into my spine hard over and over again repeatedly, gouging the shit out of my spine. Finally it was over. I was proud of the fact that I didn’t even wince once. They asked me how I felt immediately after but I didn’t know. I said I needed some time to evaluate. After awhile I realized my head pain had largely disappeared, including my eye socket pain, and I told them that and they were pleased. I was a little shocked. I guess I did have a spinal headache but I never knew they could be so damn bad. It was just about the worst head pain I’ve ever felt. Now I’ve got a 0 out of 10 head pain since 11:30 am yesterday and that’s awesome. I wonder how long this will last? Unfortunately my back hurts pretty badly from all the trauma it’s had to endure over the past few days. Hurts a lot. Hopefully that will improve fairly quickly. I’m glad they insisted I come in Friday morning rather than going through the weekend. That would have been a disaster. Getting the disgusting, painful blood patch was one of the best things I ever did.

So, that’s where I’ve been the past few days. Sorry I’ve been out of touch. I’ve truly not been feeling well. I have four books stacked up to write reviews for, but I really haven’t felt like it. I don’t know when I’ll get to those. I hope everyone has a nice Valentine’s Day. Ours will be low key, unfortunately. Frankly, I’m just glad to be okay.

 

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