Feeling The Crash Coming, But Not Wanting to Stop

Guest Blogging in bold black lettering on a spiral notebook paper, on a desktop with a cup of coffee, laptop computer, and other accessories.

By Allison Jonergin

It’s hard to say no when I’m feeling well, because I want to have fun, see my friends, and be out doing stuff.

There’s an invisible perimeter to my energy levels, unseen even to me. I can sense it nearing, but am often unable to accurately gauge how much activity I can undertake before the ground gives out beneath me. When I feel exhaustion creeping in, I often dread deciding whether or not to make plans. I hesitate, I calculate, I dread, and then I decide. I need to be sure there is enough time in my schedule for adequate rest following the activity. Likewise, I need to be sure there isn’t too much on my plate prior to the activity. But the amount of rest my body requires is variable, adding to the uncertainty.

I’ve been having a great streak lately. My pain and energy levels have been manageable, and I’m choosing to use extra time and energy with friends.

But I worry. I worry because I can feel my energy levels taking longer to replenish. I can feel my pain levels rising. Do I stop now? Do I slow down? Or do I keep going until the crash? Summer only lasts so long, and I want to take advantage of it to do the things I enjoy. My pain is inversely related to air temperatures, and as soon as autumn moves in, I feel less and less able to do things. It’s a recurring dilemma that doesn’t get any easier to resolve.

I began drafting this blog over a month ago, and my predicament has only grown more pressing. I’m falling asleep earlier and still sleeping through even my most obnoxious alarms in the morning. When I get up, my pain levels are beginning to feel as though I’ve missed a dose of my medication, and my brain feels even more fogged than usual. I can feel my body’s warning lights blaring red, but it feels so good to be caught up in this stamina, this marathon of working and hanging out with friends instead of collapsing into the couch. In this precious space, I actually feel the freedom to be normal.

For now, the fatigue, migraines and pain are manageable. Increasing, but not show-stopping. And I am oh, so thankful that these are the largest concerns I have regarding my health and wellness. I’m not scheduling surgeries, I’m not spending my days off getting tests done, and I’m not stressed out about needing to take extended periods of time off from work. If being overly tired, sore from body aches and bogged down with migraines are the worst complaints I have these days, things are pretty darn good. When the last of my energy is gone, my friends can wait. My to-do list can wait. For now, let the good times roll.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She suffers from multiple chronic illnesses including fibromyalgia, CFS/ME, endometriosis, irritable bowel syndrome and degenerative disc disease. She also has post-concussion syndrome, anxiety, depression and PTSD.

The North Country Center for Independence in Plattsburgh, NY is always looking for writing on disability-related topics by people with disabilities in the North Country. If you are interested in writing a guest post for the NCCI Blog, send an email inquiry or draft article to: apulrang@icloud.com.

Planning an Inclusive Valentine’s Day

Guest Blogging in bold black lettering on a spiral notebook paper, on a desktop with a cup of coffee, laptop computer, and other accessories.

By Allison Jonergin

Valentine’s Day is meant to be a special celebration of love between romantic partners. But suppose your romantic partner is disabled or chronically ill. How do you ensure the date is one they’ll be able to fully participate in and enjoy?

Let’s say you’re planning to cook a romantic meal. One idea is to ask your partner if there are any foods or beverages they cannot tolerate. Note: I don’t mean asking what their favorite foods are. But it’s best to rule out trigger foods before you hit the grocery store, especially if you’re planning to purchase any Valentine’s Day sweets.

Similarly, if you’re looking to share a restaurant meal, try asking if there are any restaurants that you should nix from your list before you make a selection. Personally, my needs are mostly dietary in nature. There is nothing I can eat at a Chinese restaurant, but I have plenty of choices at a seafood joint. Perhaps your date has other needs that require additional research and consideration. For instance, I’m able to walk from the car to the restaurant, and can sit at either a table or booth. But I get overstimulated in loud, bright environments, especially if I’m there for an extended period of time. A dimly lit, quiet venue would be my preference. Your partner’s needs may look different from mine. The restaurant you choose may need to be equipped with ample parking, accessible entrances, and tables and restrooms suited for wheelchair access. In that case, calling ahead to reserve a table might be your best bet.

My disability doesn’t qualify me to advise on every single disability out there and what accommodations may suit those who have them. I can only speak from the perspective I’ve formed based on my own.

It’s best if you speak candidly with your date about what they need to be able to enjoy the evening. Once you’ve learned their needs, do your research! If you care for someone and want to treat them to a romantic date, give yourself extra time to plan so when Valentine’s Day arrives, you’ll be able to focus on spending time together in a way you’ll both enjoy.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She suffers from multiple chronic illnesses including fibromyalgia, CFS/ME, endometriosis, irritable bowel syndrome and degenerative disc disease. She also has post-concussion syndrome, anxiety, depression and PTSD.

The North Country Center for Independence in Plattsburgh, NY is always looking for writing on disability-related topics by people with disabilities in the North Country. If you are interested in writing a guest post for the NCCI Blog, send an email inquiry or draft article to: apulrang@icloud.com.

Navigating Healthcare for the Disabled

Guest Blogging in bold black lettering on a spiral notebook paper, on a desktop with a cup of coffee, laptop computer, and other accessories.

Guest Blogging in bold black lettering on a spiral notebook paper, on a desktop with a cup of coffee, laptop computer, and other accessories.

By Allison Jonergin

Dealing with Medicare, Medicaid, and the Department of Social Services on top of doctors’ offices and pharmacies is a nightmare.

By now we all know that healthcare in America is screwed up. That goes for all Americans, but the disabled are at an even steeper disadvantage.

We’re forced to rely on Medicare and Medicaid, and as such, are at the mercy of the politicians who write laws dictating their terms. Being that Medicaid funding is a partisan issue, Medicaid programs vary widely from state to state.

If I need to see a specialist out-of-state, my NY Medicaid won’t apply, leaving me with significant out-of-pocket costs that Medicare doesn’t cover. I also have to have a separate Medicare Part D insurance plan to cover my prescription medications, meaning I have three separate health insurances to fight with.

I live with multiple chronic illnesses, and thus attend doctors’ appointments quite regularly. I spent two months delaying treatment this summer after being told any future visits taking place prior to the conclusion of my current benefit year wouldn’t be covered.

As that date wasn’t for another five months, I hurriedly contacted every one of my providers to cancel my appointments. Furthermore, I asked that they each file a request to increase my Medicaid Utilization Threshold, which outlines an arbitrary number of appointments Medicaid will pay for in a given year. I faced confusion from virtually all of my doctors’ offices, and was told by many it would take weeks for them to even receive the forms needed to file the request on my behalf. When nearly all of my doctors offices had successfully increased my limit, I was finally told by Medicaid that as long as my coverage is active, I cannot be turned away from an appointment. The doctor’s office, however, will need to battle it out for payment.

It’s no wonder so few providers accept Medicaid. They are paid so little for their services, and face the same hurdles we do when trying to secure payment. These reasons factor into why it’s difficult as a patient to find accessible care.

One mission President Biden has is to expand Medicaid, but it seems the only means by which he hopes to do so is by broadening the eligibility criteria. Unless his plan also includes changes to Medicaid’s administrative procedures that will streamline the billing process, I fear the existing issues will only be compounded as the number of covered individuals rises. Eligibility means nothing if you have to travel to find a provider.

My dentist’s office, for instance, is located 50 miles away, because that was the closest one I could find that accepted Medicaid. For some, that may lead to putting off or foregoing treatment altogether.

Additionally, the amount of time we must spend on the phone to ensure we receive the care we’re entitled to is maddening. It doesn’t help that we often have more doctors treating us than the average able-bodied person, multiplying the legwork it takes to coordinate our care.

In regard to President Biden’s agenda, expanding the eligibility criteria for Medicaid would benefit many Americans and their families. Therefore, it is even more vital we enact changes so that Medicaid functions better for everyone.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has multiple chronic illnesses including fibromyalgia, CFS/ME, endometriosis, irritable bowel syndrome and degenerative disc disease. She also has post-concussion syndrome, anxiety, depression and PTSD.

We are always looking for writing on disability-related topics by people with disabilities in the North Country. If you are interested in writing a guest post for the NCCI Blog, send an email inquiry or draft article to: apulrang@icloud.com.

What TPD Student Loan Forgiveness Means for Me

Guest Blogging in bold black lettering on a spiral notebook paper, on a desktop with a cup of coffee, laptop computer, and other accessories.

By Allison Jonergin

Student loan debt has been a looming cloud over the heads of many borrowers, regardless of how far in the past those loans might’ve been taken out.

There’s been much talk over the past few years about the need for federal action to mitigate this cumulative burden.

Disabled debtors joined this fight, advocating for the discharges already guaranteed to those with total and permanent disabilities to be more accessible. Finally, under the Biden-Harris administration, the federal government heard these calls to action. In August, new changes were announced to this particular student loan forgiveness program.

The Social Security Administration will now do the legwork in identifying which disabled individuals qualify for this discharge and will grant it automatically. Prior to this change, the responsibility fell on the disabled to apply and provide proof of eligibility.

Now not all disabled individuals have a total and permanent disability. Take me for instance. I was first determined to be disabled by the SSA in 2019. My next evaluation was set to take place this past summer, though with Covid I have yet to hear an update. If, after this second evaluation, the SSA again determines I’m disabled and is confident my disability will not improve, then I will be defined as totally and permanently disabled. After which, I will be eligible for a discharge of my student loan debt. 

I have long hoped to qualify and receive this benefit, as I am now unable to earn the wages needed to pay off my loans. For years, I’ve been stuck in repayment limbo, where I have had to continually provide proof of income in order to qualify for a temporary pause on the repayment of my loans. With the passing of the CARES Act last year, I — along with everyone else — was relieved of having to make student loan payments, thus eliminating the need to apply and provide eligibility for a repayment plan. That in and of itself has been a source of huge relief for me. It won’t last forever, though.

To know that my student loans will be forgiven automatically after my next SSA determination makes me feel as though disabled voices are finally being heard, and I am tremendously thankful. Thankful to the federal government for listening, but even more so to the persistence of those fighting for us, who most often are disabled as well.

When I feel overwhelmed and am struggling to see the light at the end of the tunnel, I am reminded of people just like me who are lighting the way. To them, I owe my gratitude as well as my admiration.

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The North Country Center for Independence in Plattsburgh, NY is always looking for writing on disability-related topics by people with disabilities in the North Country. If you are interested in writing a guest post for the NCCI Blog, send an email inquiry or draft article to: apulrang@icloud.com.

When Your Symptoms Blow Everyone Away

By Allison Jonergin

I’d prefer if I alone bore the burden of the symptoms of my illnesses. It would be less stressful, in a sense.

The truth is, others have to contend with the manifestation of some of my symptoms and their emotional byproducts, including moodiness, irritability, apathy, fatigue and careless, curt comments.

There is another symptom, however, that announces itself unavoidably, much to my dismay and that of everyone around me. I’m talking about flatulence, and the inescapable odor that fills the air surrounding my person without warning, entirely out of my control. Still, I fret about it. At the very least, I painstakingly attempt to schedule my meals and the consumption of certain culprits, trying to reduce the occurrence of such events when I know I’ll be at work. But ultimately, there is nothing I can do when it happens.

I was laid off a little over a month ago. Miraculously, I’ve been able to find employment that suits my abilities. Nevertheless, settling into a new job and a new routine has been an adjustment. I also have entirely new coworkers to build working relationships with, and my digestive issues pose a potential barrier to that, or so I fear.

I’ve had Irritable Bowel Syndrome for 10 years now, and while I’ve discovered several new intolerances in the past year, I’m able to exert some degree of control over my symptoms by adjusting my diet. 

Last fall, an additional adversary entered the ring. I began experiencing gallbladder attacks, as they’re called. The punishingly painful attacks can last a short while or carry on for several hours.

After repeated attacks, several tests and one emergency room visit, I was diagnosed with chronic gallbladder dysfunction. In essence, my gallbladder’s ability to function had deteriorated and would continue to do so, necessitating its removal before it became infected. That surgery would have to wait. More urgently needed was the operation to remove endometriosis before it could spread even further.

At last, my gallbladder was removed in May. I was laid off just as I recovered and haven’t had much time to learn how to navigate the symptoms that are now part of my life post-cholecystectomy, not least of these being the putrid passing of gas.

Breaking the ice with new colleagues can be challenging in and of itself, but breaking wind is certainly a unique way of ensuring they’ll remember you.

It’s awkward. It’s embarrassing. And worst of all, they have to sit in my stench the same as I do. So far my efforts seem to be paying off, as I’ve had fewer farting incidents at work than I was expecting, given how frequently they occur just about everywhere else. In addition to that worry is the fear I’ll feel the sudden urge to use the bathroom while at work, as it has already happened while out and about. Whether it be at the store, the bank, or friends’ houses, no place is safe from these symptoms. The strongest sensation I’ve felt at these places recently is dread, but the best antidote has been a forgiving family and friends who let me laugh about it, as they laugh right along with me.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She suffers from multiple chronic illnesses including fibromyalgia, CFS/ME, endometriosis, irritable bowel syndrome and degenerative disc disease. She also has post-concussion syndrome, anxiety, depression and PTSD.


The North Country Center for Independence in Plattsburgh, NY is always looking for writing on disability-related topics by people with disabilities in the North Country. If you are interested in writing a guest post for the NCCI Blog, send an email inquiry or draft article to: apulrang@icloud.com.

How The Structure of Tabletop Roleplaying Games Help Me Focus and Connect

Guest Blogging in bold black lettering on a spiral notebook paper, on a desktop with a cup of coffee, laptop computer, and other accessories.

By Gemma Tendrich

A joke I often make is that the best way to get me to do something is to make a game out of it. But that isn’t entirely a joke. As someone who struggles with my executive function, it is common for me to get easily overwhelmed with simple tasks or find the day passing me by without being able to focus on anything. It leads to a lot of frustration and worsening depression when tasks that I know should be easy seem impossible to start or finish. I also struggle with social anxiety, with things as simple as phone calls causing panic attacks. But my love of games, specifically tabletop roleplaying games, has helped me better manage these issues.

For those unfamiliar, tabletop RPGs usually involve a group of people taking on the role of heroic characters as they work together to defeat monsters and explore a shared fantasy world. One player is the Game Master, the person who organizes the game and creates the world for everyone else to explore. While dice rolling is involved, a lot of the game involves the players describing what they do and acting as their characters. Everyone works together to make it a fun game, but the Game Master has the most responsibility to make sure everything runs smoothly each week. And, as surprising as it sounds, I found myself taking on the role of Game Master not long after discovering these games. Usually, the idea of scheduling and preparing stuff for a deadline would make me anxious. Even more so, the idea of trying to gather a bunch of people together should have made my social anxiety go through the roof. And yet, because of this game, I found myself taking on the role of organizer and leader for a group of friends. Each week I would talk to everyone to find the best time to meet up. I would spend the week before each game preparing new challenges to throw at the players. I found myself reaching out to strangers to ask them to join our game and making new friends. All of these things would have seemed daunting if not impossible to me in the past but somehow I was able to.

I hadn’t even realized that I had been getting over my social anxiety and struggles with focus and planning until long after I started playing. But something about tabletop RPGs made something click in my head. My real-world responsibilities aren’t games, but realizing how easily I was able to plan and interact through games has given me tools to help me focus and connect. The accountability of having others looking to me to schedule and plan our games has helped me set up systems where I hold myself accountable for tasks through timers or the help of friends. Another big part of games is getting rewarded for completing tasks, so I’ve found myself setting up little rewards for myself to help trick my brain into treating my chores like games. And, as silly as it may sound, sitting around at a table pretending to be an elven wizard or an evil dragon has helped me come out of my shell socially. There is comfort in pretending to be a character for a bit and with time it has caused me to be more open out of the game and less anxious around strangers. After all, if I can do a silly goblin voice in front of people once a week for three hours, making a phone call doesn’t seem so bad anymore.

Gemma Tendrich is a SUNY Plattsburgh alumni who majored in English Literature and Creative Writing. Originally from New Jersey, she now resides in Plattsburgh, New York. She lives with depression, anxiety, and multiple learning disabilities and tries to incorporate aspects of these experiences into her writing.

The North Country Center for Independence in Plattsburgh, NY is always looking for writing by people with disabilities in the North Country, on disability-related topics. If you are interested in writing a guest post for the NCCI Blog, send an email inquiry or draft article to: apulrang@icloud.com.

Surviving on SSDI Benefits

By Allison Jonergin

This may be a taboo topic to talk about, but I feel it’s important.

Social Security Disability Insurance benefits alone are not always sufficient to provide for a decent life. Despite being permanently disabled, my benefits do not surpass the Federal Poverty Level (FPL), the guideline used in determining someone’s financial eligibility for certain federal assistance programs. The FPL for an individual in 2021 is $12,880.

Supplemental Security Income (SSI) is one such program. However, someone receiving more than $814 in unearned income per month is ineligible, which includes SSDI benefits. Free food and shelter are also counted as income, meaning people like me who live with family at no cost are even more likely to be deemed ineligible. SSI also caps your allowed savings at $2,000, severely restricting one’s sense of financial security, let alone growth.

Fortunately, there’s an alternative to storing funds in a bank account.

In December 2014, Congress passed the Stephen Beck, Jr., Achieving a Better Life Experience (ABLE) Act, allowing those with disabilities that began prior to the age of 26 to save for eligible disability expenses in a tax-free savings account.

In addition to being tax-free, these funds are exempt from determining whether the individual is financially eligible for federal assistance programs, up to $100,000.

I’m supremely thankful for this opportunity to save for the future without fear that these small contributions will disqualify me from receiving services I rely on every day, like Medicaid.

In the short term, however, weighing my prospects of ever living independently with a rent or mortgage I can afford is more problematic, even with a roommate. I’m lucky in that I’m able to work part-time, but my work history is spotty at best. I’ve never enjoyed the benefits that come with full-time employment, meaning sick days are unpaid, and so is time off taken to recover from surgeries. I’ve left every place of previous employment because my symptoms proved too great a barrier in completing my required duties. Moreover, they’ve made finding and securing a new job extremely challenging. The jobs I’ve been able to take, including my current job, are considered entry-level and pay as such.

It’s hardly practical to picture and prepare for a future wherein my ability to work won’t be interrupted by more surgeries, as I’ve had five surgeries in the last five years. I haven’t yet come up with a solution that would allow me the financial freedom and flexibility to independently afford monthly bills based on my monthly income should I ever venture off to live under my own roof.

I’ve learned of programs that greatly assist disabled individuals in receiving loans to purchase a home, but without an income that covers my personal and medical expenses as well as the mortgage, these programs too feel out of reach.

All of these factors combine to cause my anxiety to skyrocket and my self-confidence to plummet. I don’t know what the future holds, but I can be certain it holds uncertainty.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She suffers from multiple chronic illnesses including fibromyalgia, CFS/ME, endometriosis, irritable bowel syndrome and degenerative disc disease. She also has post-concussion syndrome, anxiety, depression and PTSD.

The North Country Center for Independence in Plattsburgh, NY is always looking for writing by people with disabilities in the North Country, on disability-related topics. If you are interested in writing a guest post for the NCCI Blog, send an email inquiry or draft article to: apulrang@icloud.com.

Enjoying America’s Favorite Pastime, Through Brain-Fogged Eyes

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By Allison Jonergin

It’s baseball season, and I’m once again reminded of how different enjoying this beloved pastime is now compared to the days before fibro fog and post-concussive syndrome fatigue.

What used to be a relaxing experience is more of a mental exercise now. My brain’s tendency to zone out becomes particularly intrusive, in that missing a play can lead to a less-than-comprehensive understanding of the overall game. This is especially true the more plays you miss out on.

I find myself rededicating my efforts to concentrate repeatedly, moment after moment. This, in itself, creates a continual distraction that impedes my ability to focus beyond the goings on of my mind. Moreover, my mind is fending off a constant influx of distracting thoughts. To combat this, I first work to create a meditative state in which to distance myself from them. This trance, if you will, must be continuously sustained, producing a kind of mental tension that exhausts my resources rather quickly. This tension also serves to heighten my baseline level of anxiety, as I’m working twice as hard to pay attention. I know that the longer I’m able to sustain this effort, the better my chances are of being able to follow the game and then, enjoy it.

Still, there’s no guarantee that a single distraction won’t break through my concentration and derail the whole process. If one does, or if my mind zones out too often, I adjust my expectations to reflect my abilities in that moment, hoping instead to enjoy each play I’m able to follow. I grant myself permission to relax, however that may look. Oftentimes I retreat to my phone, where I’ll never miss out on anything for having zoned out. I can pick right back up where I left off in the article I was reading, or the text message I was writing, or the alarm reminders I was setting. I can still enjoy the comfort of hearing the game play in the background, if I’m not so overstimulated that it feels better to mute it or turn it off entirely.

Sometimes, the frustration of failing to concentrate long enough to follow a pitch from the time it leaves the pitcher’s hand to the time the batter swings is simply too much to ignore. In that way, the emotional impact of my cognitive abilities, or inabilities, adds to the challenge of finding enjoyment.

But, the greater the challenge, the greater the reward. When I successfully zone back in just as soon as I’ve zoned out countless times throughout the game, and am able to truly say I’ve enjoyed it as much as I knew I could, it’s worth it. Exhausting, but so worth it.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has multiple chronic illnesses including fibromyalgia, CFS/ME, endometriosis, irritable bowel syndrome and degenerative disc disease. She also has post-concussion syndrome, anxiety, depression and PTSD.

The North Country Center for Independence in Plattsburgh, NY is always looking for writing by people with disabilities in the North Country, on disability-related topics. If you are interested in writing a guest post for the NCCI Blog, send an email inquiry or draft article to: apulrang@icloud.com.

Endometriosis, My Old Friend

Guest blogging banner showing a laptop computer, a spiral notebook, pens and pencils, a pair of glasses, and a cup of coffee on a wooden desk

By Allison Jonergin

We had a good run, my endometriosis and I. Following my total hysterectomy seven years ago, I’d enjoyed the complete elimination of most of my symptoms, and the drastic reduction of those that remained.

For years, I’d been liberated from relying on hormonal treatments and surgeries just to make my day-to-day life tolerable. I had accepted that a hysterectomy is not guaranteed to cure endometriosis, so in a way, it was only a matter of time until I found myself sitting across from a surgeon, preparing for another operation.

I’ll back up. Last fall, pelvic pain became prominently pronounced seemingly overnight, as did inflammation, stomach bloat, fatigue and nausea. I won’t even begin to discuss the unique pain that awaited me every time my bladder filled or worse, I tried to use the restroom.

Suffice it to say, biting down on the collar of my sweat-soaked shirt with clenched teeth as I clutched the wastebasket became a frequent phenomenon.

Those of you who have IBS are no stranger to episodes like these, but this pain was different. Different, yet all too familiar.

Outside of the bathroom, commonplace movements and maneuvers were now accompanied by shockingly sharp pangs that stopped me in my tracks and filled me with dread.

As the reality that my endometriosis had returned sunk in, I found myself rekindling my close friendships with my heating pad and ice packs. I regained intimacy with my couch as the increasing fear that all I had suffered before my hysterectomy had returned to stay consumed me. Simply sitting upright and standing in place were unbearable positions to occupy for more than a few minutes, and I desperately tested countless others in an attempt to find relief. Whenever possible, I curled up in a ball on the couch. There, it was possible to avoid aggravating my pain, but relieving it entirely was not.

In acting quickly, my surgeon was able to salvage my last remaining ovary in an effort I’d hail a miracle. She’d prepared me for the likely possibility that endometriosis would necessitate its removal and I’d awaken from the operation having entered into menopause. Instead, she started me on a hormone treatment to suppress ovulation in an effort to keep my endometriosis at bay. And while my endometriosis was classified as Stage III (out of IV), it wasn’t found anywhere other than my ovary. Adhesions, however, had fused my ovary, bladder and rectum to my pelvic floor. That’s great news and terrible news. It’s a relief she didn’t find endometriosis coating my pelvic floor, but it’s awful that scar tissue had inflicted so much damage and pain. While there are no cures for endometriosis, there are at least treatments available that can help mitigate its symptoms. The solution for scar tissue stemming from previous surgeries? Don’t have additional surgeries. So that’s fun. The only way to fix it is to operate. The only way to prevent it from happening again is to avoid operating.

Alas, my troubles may not be over, but for now they’re much more tolerable. And when you’re chronically ill, that’s really all you can ask for.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She suffers from multiple chronic illnesses including fibromyalgia, CFS/ME, endometriosis, irritable bowel syndrome and degenerative disc disease. She also has post-concussion syndrome, anxiety, depression and PTSD.

The North Country Center for Independence in Plattsburgh, NY is always looking for writing by people with disabilities in the North Country, on disability-related topics. If you are interested in writing a guest post for the NCCI Blog, send an email inquiry or draft article to: apulrang@icloud.com.

Living with Petroleum Allergies in a Chemical World – Rock Bottom

Guest Blogging, with picture of a 3-d white stick figure holding a giant pen

By Steven Neil

A week following the food tests, My allergist tested my reactions to common allergens such as grass, weed pollens, dust mites, dog and cat hair, etc. Not surprisingly, I had the following thirty allergies:

Molds:

1.    Alternaria alternata
2.    Aspergillus fumigatus
3.    Candida albicans
4.    Cephalosporium
5.    Helminthosporium solani
6.    Hormodendrum

Weeds:

1.    Lamb's Quarter
2.    Plantain
3.    Russian Thistle
4.    Sagebrush
5.    Ragweed

Inhalants:

1.    Cat Dander
2.    Cat Fur
3.    Dermatophagoide farina (Dust Mite)
4.    Dermatophagoide pteronyssinus (Dust Mite)
5.    Dog
6.    Feathers

Trees:

1.   Acadia
2.   Alder
3.   Ash
4.   Birch
5.   Cedar
6.   Cottonwood
7.    Elm
8.    Maple
9.    Oak
10.   Pine
11.    Russian Olive

Grass:

1.    Kentucky Blue
2.    Timothy

Wow, seventy-five allergies, not including the sun, heat, or stress. At long last, I could see what I was facing and begin to understand what I needed to do to get back to a semblance of a normal life.

It was at this time that L&I scheduled a physical for me to evaluate whether I qualified for disability due to my allergies. I do not know what it is like in other states, but Washington assigns you an employment specialist when you have been off work due to an industrial injury for the length of time I was. The specialist is not there to help you find a job, promote retraining, or look out for the injured party in any way. Instead, they are there to dig as deep as possible to find three companies that would hire a person with the medical issues that the injured party has. The counselor is not concerned whether the company would employ the wounded worker, just that they might consider hiring someone with those conditions. My counselor told me he had to contact a lot of companies to find three, but in the end, he did find them.

According to his research, I could get a job in an office as an office manager. I asked him how he came up with office manager since I had never been a manager, had not worked in an office for over a decade, am allergic to paper, cubicles, cleaners, and multiple other items I would encounter in an office setting. He answered that the employers he asked were just interested in my BA degree in Organizational Management. So, I guess all the times I had applied for office jobs in the past and was never even interviewed for the position was irrelevant; I just needed a degree to get a job according to L&I.

The actual physical was short, fifteen minutes at tops. The doctor asked a few basic questions, confirmed some dates and conditions, and silenced me when I tried to elaborate on any details. The doctor was unfriendly and unconcerned about me, and at the end of the exam, he got up and walked out. And that was that.

Two weeks later, I received L&I's decision concerning my condition. According to them, based on my dermatologist's prescription of CellCept and the career counselor's ability to find three companies willing to hire someone in my condition, my claim was terminated.  I was not disabled, did not require retraining, nor continued coverage for my medical bills or L&I payments. I received the notice of my L&I cancellation on the day I should have received my two-week paycheck. My cut-off date was two weeks before.

So, there I was, no more L&I pay, no more insurance coverage, no job, and with seventy-five allergies still afflicting me. This point indeed was the bottom of the barrel, meaning I had no place to go but up.