hankrules2011

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Posts Tagged ‘future’

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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A “Major” Status Update

Posted by Scott Holstad on April 18, 2019

I published this article on LinkedIn today. I thought I would share it here. If you wish to see it at the source, you can find it on my LinkedIn profile. However, I’m going to republish the piece in its entirety here, since not everyone has a LI account and some would not be able to read it.

 

A “Major” Status Update

 

Hello. I’ve decided it is long past time to write a personal status update with explanations about several issues regarding myself, our business, and my goings on here on LinkedIn. Sorry for taking so long. My last update was in September (https://www.linkedin.com/pulse/major-changes-scott-holstad/) and a lot has happened since then, and I frankly haven’t had the time to write another until now – and many of you have been inquiring into my status, so I feel I owe you a promised explanation.

As many of you know, I’ve had some severe health problems for awhile, which worsened considerably last year, resulting in three near-death experiences, ample time spent in and at various hospitals, countless tests, procedures, medications, etc. In November, several things occurred which resulted in a number of injuries, for which I’ve had to undergo more tests and past and future surgeries. What I didn’t realize was there apparently was more under the surface, which when added to some pre-existing conditions and issues, resulted in new and worsening symptoms that didn’t initially make much sense, but which accelerated at a shockingly fast pace, week by week. I won’t list most symptoms, but suffice it to say that among them were signs of increased cognitive impairment. That actually isn’t entirely new, but the rate of progression was astonishing, compared to previously, and new symptoms were disturbing and confusing.

Typically, I started researching like crazy, about anything remotely associated with these symptoms, and a pattern started to emerge, which when added to a series of events dating back to at least 2016, chronologically showed evidence of growing problems. Indeed, I was diagnosed with a particular condition as far back as 2017 and put on some strong medication. I was overseen by several specialists, but that was largely put on the backburner last year when I “died” in June, and then with the chaos that followed.

In any event, I began to figure things out in January, started making more notes, and came up with not one, but two related conditions, which when one considered the symptoms, the ways in which such conditions emerged, and events in my life that chronologically matched periods of memory impairments and numerous other issues, really made sense. I developed a detailed theory and discussed it with my wife, who was resistant. I wrote a lengthy logical document detailing what I just mentioned, gave it to her and she was finally convinced. I then met with doctors, discussed this/these with them, gave them the information, and they agreed with my self-assessment/diagnosis. So, I’ve been put on some new medication and I was given some information, advice, and an outlook which wasn’t very … optimistic. The potential exists that I am in an advanced stage of this/these conditions, generally related to cognitive impairment, potentially quite severe. I’m sure you can figure things out for yourselves. I have an appointment for far more extensive testing soon. We’ll know better then what we’re looking at. At this point, the doctors currently overseeing me have generally given me six months to two years to live, with a strong emphasis on the former. Basically, they said it would be surprising for me to see 2020. I haven’t told my elderly mother, nor has my wife told her family. We’re discussing this with no one. Only my doctors know anything, and I want to keep it that way. Of course, anything is possible and further testing may show these specialists are wrong, or at least their prognosis is off base. But I’m pretty convinced. I’ve been keenly aware of my progressively worsening state on a daily basis, and my wife admits that she too has observed me worsening regularly since December. I’m looking at an incurable, irreversible, terminal condition. I’ve never been afraid of death. I’ve come so close to death in so many ways over my lifetime that I simply have no fear. I DO fear a few ways to die. For instance, I never relished the notion of crashing to earth in a plane. And like my parents, none of us wanted to ever get something like Alzheimer’s (who does?). Whatever the case, one rarely gets to choose what method, what time, under what conditions. For most, it just happens when it happens. So my concerns now are to take care of details for my wife and her future, do whatever is necessary to slow down and stop working, to shut down the company (Yes, I intend to shut down WireMe Designs, LLC sometime this year.), and to try and make it day to day. For many months now, my life has radically changed. My usual habits and patterns have been altered. Now, I am constantly fatigued, but I often can’t sleep at all and will go 48 and 72+ hours without sleep before having a night where I sleep to 11:30 the nexmorning. I’m also a lot weaker, more prone to falls, and have been having more trouble walking. I’ve used a cane for some time, but doctors insisted in late 2018 that I start using a walker, which has really taught me humility. Severe stomach problems have also returned, notably severe nausea, incredibly extreme pain, and often an inability to eat at all; there are days I simply don’t eat. Furthermore, I have suffered from Trigeminal Neuralgia Type 2 for a decade, as well as many serious back conditions, resulting in dozens of surgeries. For years, I’ve lived daily with indescribable pain, and it impacted me terribly the first two years, but I came to adapt to a large degree, and my pain tolerance level is actually extremely high by most accounts. However, my pain is greater than ever and my entire body hurts nearly constantly, and now most of my days consist of attempting to do some necessary things, now very difficult, and then of simply existing, at various time, barely cognizant. I shut down my Facebook account and am no longer active on virtually any social media except LinkedIn, and my time here has decreased. And as many of you have found out, it’s nearly impossible for me to reply to the large number of messages and emails I regularly receive. I’m having to limit my interactions because my window of opportunity for daily productivity has been radically shortened. So forgive me if it seems like I’m ignoring you because it’s not that I don’t want to interact with you – I’m just very limited now. So, I’ll do what I can to keep sharing relevant articles, posting commentary, writing the occasional article, and I’ll keep making connections with people, but I can’t do what I’ve typically done in the past, and that’s give significant time, energy or effort to any project or favor requests that come my way. With many apologies. So, I wrote more than I intended, but I felt like after all this time, I owed an explanation, and I needed to explain my current and future status, as well as that of the company’s. I appreciate everyone in my network and those who follow me, and I appreciate any support thrown my way. You have my gratitude. I’ll probably be on here less than normal, but I’ll try to get on regularly for as long as possible. Cheers to you!

Scott Holstad

April 18, 2019

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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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Two Near-Death Experiences & Changes

Posted by Scott Holstad on September 18, 2018

Hello. I’ve been meaning to blog about some events that happened to me this summer, but I haven’t found the time, energy, stamina, etc. But I wrote a post and published it on LinkedIn this morning, and I’m going to provide the link for it here. It’s called “Major Changes.” It details how I suffered two near-death experiences in June and July, how recovery has been largely non-existant, how things keep happening to me, and how I’m unable to do any projects, gigs, favors, or even travel, for months. I’m hoping to be in a much better place by Christmas, but that remains to be seen. I may not make it to Christmas the way things have been going.

While I still have a decent number of blog subscribers here, since I essentially went an entire year without blogging (due to extremely poor health), I’m afraid I’ve lost most of my readers, so I really don’t know that too many people will read this or care, but for the few of you who will, thanks. And I’d like to blog more often — truly. It’s just really hard to find the time, energy, stamina, etc., when you feel the way I’ve been feeling for months. So, my apologies. I hope you are all doing well, and I’ll “see” you guys later. Cheers!

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