What You Need To Know About Pre-Employment Drug Testing

I recently had to undergo drug testing at my place of employment and I didn’t pass. To tell the story correctly though, I need to take you back in time about 20 years.

I was married at the time, and my husband found a job he really wanted. He was offered the position contingent on his passing a drug screen. Long story short, he failed the drug screen. He blew his stack, threw his tantrum, SWORE he had been clean for the test, and claimed that there was NO way he could have failed the drug test. Unfortunately, I knew he would go off and see his cousin quite often during the week, and that they both “partied” REAL hard during his visits. So, when he swore he was clean for the test, I was busy rolling my eyes, thinking about his cousin and him, and basically blew him off. I was extremely sceptical, to put it bluntly.

Failing The Test

Now, fast forward almost 20 years, I’m in a similar situation. I failed a pre-employment drug screen. I have been diagnosed with Sjogren’s Syndrome, Antiphospholipid Antibodies (try saying THAT one 3 times fast!), Hypothyroidism, Vitamin D Deficiency, Fibromyalgia, and finally, Sleep Apnea. I was on Fluoxitine, Ranitidine, AND Loratidine, all of which could possibly test positive for Amphetimine. I was also on Tramadol, which could have tested positive for Opiates.

Of course, the first thing I say is that my doctor either knows about everything I take or has been the one who prescribed it to me. My boss, being a very understanding guy, tells me that if I can figure out what medicine it is, and if I can do without it a few days, he would get me another drug test, but I would have to pay for it.

I didn’t know any better, but I suspected it was my anti-depressant, so I went for 5 days without it. BAD move!! I redid the drug screen and failed once again. I was fired that day. I almost had a nervous breakdown to go along with it (no antidepressants and all). I went back to the testing laboratory. They got permission from my now-previous employer to give me copies of both test results, then the manager of the lab took pity on me and explained how drug testing works.

Lab Testing for Pre-Employment Drug Screening — Lab testing for Pre-Employment Drug Screening

The Drug Testing Process

• First, the sample is taken and tested.

• The results are then sent back to the prospective employer, and, if the employee fails the drug test, the lab asks the employer if they want to confirm the results.

• When the lab asks if the company wants to confirm, it does NOT mean do the same test a second time on the same urine. It means they want to put the sample through a Gas Chromatograph/ Mass Spectrometer, so that they can identify the exact chemical compound that is causing the enzymes to react, to see whether or not it is a compound that is legal or not.

• The company will encourage you to “clean up”, drink lots of fluids, and try to pass a NEW test, rather than confirm the results.

• What the company wants you to do is take a wild guess on what MAY be affecting your drug screen, and then get you off of it so you MIGHT pass the drug screen. The lab will be doing the exact same test on different urine, expecting different results.

• If you guess wrong, you will STILL test positive for whatever it was, you will STILL lose your job, and you will have ZERO recourse because you used your second shot on a re-test, rather than a confirmation.

I found this out several days later, after discovering this handy guide to drug testing. It told me everything I needed to know about what COULD have shown up on my drug test.

So, the moral of the story is, if you KNOW you aren’t doing anything illegal, go for the confirmation rather than the retest, EVERY TIME.

Pamela K. Oakes is 48 years old and has suffered from Fibromyalgia for about 5 years. She lives in Louisiana with her three dogs. She has a vested interest in helping people in similar situations to her own, and seeks to educate people about her illness and how best to deal with it.

October 17, 2018October 17, 2018

How Many Steps Does It Take a Chargie to Move House?

Moving into a care home can be a challenge.

I was safe, secure, and happy in my little ground flat; me and my little lady. Ok, life wasn’t the best or greatest but who can ever say theirs is?

Ok, rewind: the year 2018 had been declared the worst year ever and it was only March.

We won’t go into the bad bits that had already happened. “Why cry over spilt milk?” is very much a motto of mine and whenever I can I smile, laugh and carry on. Don’t get me wrong; I can scream at myself and this figure in the sky, whoever He be, asking, “Why, why me?” But then it’s carry on because screaming at the sky just doesn’t do anything.

To Move or Not to Move?

So in April 2018, I was a victim of anti-social behaviour. I knew then that I could never feel or be safe in my little flat again. I WhatsApp’d a group of ladies from my church who were supposed to look after me. All they said was, “It’s just kids messing around, go back to sleep.” But thankfully I have a group of the most wonderful friends, even though none of us have ever met, who came online and offered me hugs, prayers, and comfort, staying with me wanting to know what was happening and if I was ok. Who are these totally amazing friends who I swear I now couldn’t get by without? It’s you who are reading this: The Unchargeables.

So my mind told me if I moved, I was only moving once more, not twice. But here we hit the big issue that seemed immovable to everyone but me. My age. Never in my life has my age suddenly become such an issue.

Oops, no, rewind. When I was little, we as a family lived in the States. Because of when my birthday was, it meant I couldn’t start school for another whole year. All because I was born 7 days after the deadline. So my dad being my dad, who always believed he could overcome anything and beat the system, doctored a birth certificate so it looked like I’d been born 7 days earlier. Of course he was very proud of himself and told everyone we knew. It did briefly cross my mind that this was wrong, but I didn’t want him gloating again. Plus I think everyone knows my age anyway.

On to step 30…or is it 300?

So what to do? The anti-social behaviour was still ongoing. My next idea was to contact my MP and ask him to help me. With the help of a Sheltered housing officer, who was the kindest and most lovely lady, she determined to get me housed. There were several false starts, which I won’t go through or this really will be long and you’ll be entering me for my English A level exam!

I was eventually told that I had a flat at an extra care facility, or care home, where you have your own flat inside a building with one entrance, but you then have your own lockable front door and don’t need to let anyone in unless you want too. House carers provide care that your care assessment says you need. Plus a lunchtime meal; the lunchtime meal will be very important to me as on my care assessment it states I am at risk of malnutrition.

So there’s the end of the blog, you think! No, no, we haven’t reached step 300 yet! If only it had gone that smoothly it would have been so much better. But as the saying goes, “If it’s going to happen, it’ll happen to Judi!!” It used to only be my friends that said it but now after all the mess ups of actually getting me into my new flat, even my carers are saying it. Hmm…I somehow think I have a reputation following me.

When I arrived on my holiday, Marion said as I entered the reception area, “Oh no, here comes trouble!” But me, I’d much rather be recognized that way than to have people’s hearts sink when they see me or find my name on a list. I like the fact that people feel they can relax and have a laugh with me. I don’t like people even professionals being aloof from me.

The Next Hurdle to Get to the Care Home

So we over came the age issue, but the next hurdle was the funding issue. Most people in the UK who have care are funded by Social Services. However, I’m funded by the NHS because I have at least one primary health condition that causes me several different problems. One of them is severe distress and worsening mental health issues so that I can’t cope with the illness. But anyhow we won’t go down that track. Many of us, if not all of us, have that; I just saw in the newspaper that I would be funded that way and went for it.

But the issue was that they usually only fund in your own home or a care home where you only have a bedroom. I was trying to get the point over that I don’t need to be in a care home yet. Can you imagine me in a care home? I’d have them all up at midnight doing the conga round the care home, those who could walk pushing those who couldn’t. I just love that picture. Maybe I should have gone and given them a bit of life instead of just sat in the day room. But once they got past the “This is not my home and I have to leave it”, they put the funding through.

BUT………I couldn’t leave without one final hiccup. My wallpaper wasn’t at the post office to be picked up so my decorator could put it on my bedroom walls.

BUT………also leaving with one plus a lady has given me an electric bed for free and my removal man has agreed to go and pick it up before Saturday so I can have it.

So you see, in the end life is a case of throwing a dice; sometimes the numbers are good and sometimes they’re not, but in the end it all works out. Well, that’s what I feel.

About the Author:

Judi lives in Cambridge, UK. She was fit and healthy until late 2013. Her main diagnosis is Sjogren’s, but she has several serious illnesses on top of that. Her main philosophy in life is to keep smiling and keep going. Crying in a corner isn’t going to change the outcome.

August 23, 2018August 26, 2018

One Day: My Life with Gastroparesis

I have been awake all night. Not that that’s unusual. I have Sjogren’s Syndrome which, at this point in my life, causes me a lot of body pain. But last night I was struggling with a “side effect” of my Sjogren’s called Gastroparesis, a stomach condition characterized by pain and nausea. It kept me from getting comfortable enough to fall asleep no matter how I twisted and turned and puffed and propped my pillow. My stomach hurt. A lot. So much so, it felt like a Shuriken Star was lodged in it and any movement I made would push one of the points into the lining of my stomach, which was already swollen and irritated to begin with.

Gastroparesis Statistics

Gastroparesis literally means “Stomach Paralysis” according to the straight Latin definition, but most cases are only partial paralysis cases. This means that food moves through the stomach more slowly than it should. Also called slow motility, Gastroparesis affects approximately 1.5 million Americans with 100,000 suffering from a severe form and 30,000 failing to find relief from conventional medical therapies. Diabetics, for some reason, are more likely to develop this condition than the general population.

The most common symptoms are severe abdominal pain, chronic nausea and vomiting, bloating, early satiety, and a feeling of fullness. These symptoms occur due to the fact that food sits in the stomach instead of moving through it. Food can build up and the body feels the need to expel it, or the stomach pumps out extra acid to try to break it down. Or it can pass into the intestines in a lump which will cause a whole host of other end issues. For some, Gastroparesis becomes so bad that they have to have a feeding tube placed to get enough nutrition into their bodies.

My History

So this morning, after being up all night not digesting my dinner, my stomach was sending me mixed signals.

“I’m starving!…No, I’m going to burst!…No, I’m starving…”

I don’t know if this is normal for everyone with Gastroparesis, but it happens a lot during my Gastro flares. It seems like my body knows how long I haven’t eaten for and my hunger center will trigger even though my stomach isn’t done processing.

When I was tested to diagnose Gastroparesis – called a Radioisotope Gastric Emptying scan – I was told the radioactive eggs (yuck!) I had to eat should have moved from my stomach in the four hours I was there. They did not move at all. So I don’t think it’s a stretch that I could have most of my evening meal left in my stomach the next morning. Or that it has moved just enough for my body to tell me to eat again even though I am still in pain.

The Diet

So, what caused me to get to this point? Most likely I overate. (I did.)

The most common treatment for Gastroparesis is dietary monitoring. Basically, Gastro sufferers eat smaller, more frequent meals that contain foods that are termed “easily digestible”. For me, that means avoiding most fresh vegetables, fruits, and now, most meats. You see, chicken and pork can be tough and fibrous and very hard to digest. So can ground beef. For someone who does not care for the usual non-meat sources of protein and can’t eat nuts, this newest issue is problematic. But last night, I was craving a burger, and I ate one. You’d think I’d know better by now…

My Experience

Within an hour of eating, the pain started. And the queasiness. And the burping. I know gas isn’t listed as a common symptom, but I get it so bad that my husband calls me his ‘Little Sailor Girl’. And all I wanted to do was lay down, but getting comfortable was impossible. So was moving around. I could feel the food moving in my stomach whenever I changed positions. And whenever that happens, my body wants the food out. Sips of cold water help to ease the nausea, but on nights like this, I can’t take any medications, so painkillers or nausea pills are out. It’s a “ride it out” situation that will finish with one end or the other, not surprisingly, in the bathroom.

By now, you all know that this attack lasted through the night, meaning I rode out the pain and nausea. There will be continued pain as my misguided food choice finishes its journey. The pain is caused both by gas and extra acid, as well as the fact that food that sits in the stomach tends to ball up in a wad and progresses through the rest of the GI tract that way. But at least for now, the worst was over. The next steps would be addressing the fact that my stomach thought it was hungry.

My Remedies

At times like this, when my Gastroparesis is in a flare, I have a ‘go-to’ list of foods. The most common is Maple/Brown Sugar flavored Cream of Wheat. It’s mushy and bland with just enough sweetness to be appealing. And when I was pregnant, my OB told me sugar settles the stomach and to keep popsicles on hand for my ‘morning’ sickness. (I still do this; only now, I use them for Gastroparesis.) My other go-tos are cinnamon toast, Ritz crackers, chicken soup, jello, popsicles, rice pudding, and Gatorade. I will resort to these foods until my pain and queasiness dissipate. Then I will replenish my stock for next time. Because unfortunately, Gastroparesis flares can happen even when I make good food choices.

Gastroparesis: What We Know

There is no single cause of Gastroparesis, though it’s known that damage to the Vagus nerve is usually involved. This nerve controls the muscles of the stomach. What causes damage to that nerve however, can be one of a multitude of things, from surgery to diabetes (the most common cause) to medication. There are also cases that cannot be clearly diagnosed and are labeled ‘idiopathic,’ meaning of unknown origin. In my case, it’s the fact that I have Sjogren’s along with some of the medications I take that is causing my Gastroparesis. Connective tissue diseases are also listed as causes for Gastroparesis. The fact that I recently had abdominal surgery and then my condition worsened is not coincidental, either.

Gastroparesis: What I Know

As of this writing, I have been diagnosed with Gastroparesis for six years. I still do not have a complete handle on the dietary modifications I need to make. For the most part, that is my fault. I don’t have the willpower to give up chicken and burgers and crunchy stuff. But I know I have to. Not just due to the overwhelming evidence in the literature, but just due to my personal experiences when I indulge.

Life has become a true love/hate relationship with the food I eat. But that relationship is of my own making. At least I have the diagnosis and the knowledge I need to make my Gastroparesis more manageable. There may be no way to truly control it, at least for me, but there is a way to reduce the number and intensity of the flare-ups. And that, in my book, makes all the difference.

About the Author:

Sharilynn was born and raised in Rochester, NY. She was diagnosed with Sjogren’s Syndrome four months after her second son was born. Her boys are now in their 20s and she has since developed MCTD, Inflammatory Arthritis, and Fibromyalgia. Sharilynn raised her kids, worked a career, and continued to run a household with her husband all while being diagnosed with these autoimmune conditions. She currently writes about these experiences while being a volunteer kitten cuddler at a local rescue.

August 23, 2018August 27, 2018

Carole’s Chronicles: My Journey with Invisible Disabilities

It was a glorious day to have our lunch break outdoors. Imagine my surprise to feel stinging on my shoulder. Since I was wearing a wide-necked peasant blouse and we were sitting under an olive tree in the courtyard, I presumed a bee got me. But repeatedly? Thus began my forty year journey with invisible disabilities.

We—my husband Joe, our seven and ten-year-old sons, and myself—lived on the Seminary campus overlooking San Francisco Bay in beautiful Marin County, California. I had worked as an office worker so Joe could complete his B.A. after he finished 4 years in the Air Force. I then worked in Library Services at the Seminary while Joe worked on his three-year master’s degree to be a pastor and Army Reserve Chaplain.

First Injury

Over the next few days, the stinging turned into severe back pain. When I could get in to see the doctor, she put me on complete bed rest and heavy doses of Tylenol and aspirin. I had torn “every muscle on the right side of my back from my waist to upper back.” After several months of bed rest, the doctor allowed me to return to work for an hour a day, gradually increasing the time. She also prescribed extremely mild exercises. It took a year to return to 95% of pre-injury normal. During that year, Joe and our sons took care of me as well as doing all the housework. Joe also continued studying for his master’s.

The medical community could not understand the reason for the injury, although they knew my job caused it. “Just one of those things!”, they said. Then—oh, no—the exact same injury occurred again one year later. And even though I stopped the activity sooner and followed the same treatment, the outcome was significantly different. Maybe 50% recovery.

Joe graduated at the end of that year. We moved to northeast Washington where he began his career. Our sons graduated high school there and went on to college. They are now both professional men with families of their own. Sometimes, I wonder if the hardships of growing up with a mom with serious limitations actually strengthened them.

First Diagnosis

Several years after Joe’s graduation, I came across information about post-polio syndrome, also known as PPS (1). It sounded like a reasonable diagnosis as I had had polio (from which I “fully” recovered) at age two. Doctors disagreed on the diagnosis of PPS. One specialist even said I didn’t have it, as he didn’t believe there was any such thing! Anyway, the symptoms never completely fit although it did explain the fatigability. It never quite explained why my back spasmed so easily. As the weakness and fatigability increased, my life became more limited and my family had to take up the slack. Friends helped us at times.

Second Diagnosis

Seventeen more years passed before we found the next piece of the puzzle: cervical and writer’s dystonia (2). Over the years, my right hand developed odd movements and became more difficult to control. My neck and shoulders got tight, causing pain at times. The doctor began Botox injections in my neck and shoulders, which gave me great relief. Botox, which paralyzes muscles, is only temporary and must be repeated every three months. Yuck! We left the hand alone since it wasn’t that bad. The medication we tried didn’t work.

The Last Major Diagnosis

Another four years passed, and Sjogren’s (3) entered my life. It usually only causes dryness issues, but once it goes beyond those glands it can affect anything in the body. Of course, it triggered other neurological problems–what else! It also caused Raynaud’s (4) and gastroparesis (5).

Even More

Somewhere along the line, dysphagia (6) and breathing muscle problems evolved. Polio slightly weakened my breathing muscles, but my lungs remain unaffected. Either polio, dystonia, or Sjogren’s caused the dysphagia.

A few years ago, the neurologist added the diagnosis of generalized dystonia, which means the dystonia is genetic. That answered the question about all the unusual, but not serious, oddities I experienced as far back as young childhood. I consider myself very blessed because most children born with generalized dystonia have a very severe form.

No one thing by itself would be disabling, but everything together is quite difficult to live with. Individually. each condition could be worked around but the combination makes for unique problems, some of which remain undiagnosed.

Medical definitions

(1) “Post-polio syndrome is a new condition that affects the survivors of polio decades after the acute illness of poliomyelitis. The major symptoms are pain, fatigue and weakness. New weakness is considered the hallmark of post-polio syndrome. Less commonly, survivors may have new sleep/breathing/swallowing problems and some survivors may also experience muscle atrophy or muscle wasting. http://www.post-polio.org/edu/pps.html

(2) Dystonia is a disorder that causes muscles in the body to contract and spasm involuntarily. Individuals who are affected by dystonia cannot control or predict the movement of their bodies. Symptoms of dystonia do not appear the same in every patient. Dystonia may affect a specific part of the body or many parts simultaneously. https://www.dystonia-foundation.org/

(3) Sjogren’s syndrome is a systemic autoimmune disease which primarily presents with dryness of mouth, eyes, and skin. It can cause profound fatigue, and can affect any organ in the body: the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. It often occurs with rheumatoid arthritis, lupus, or scleroderma. Sjogren’s increases the risk of lymphoma. Symptoms can be mild or debilitating; they can remain steady, worsen, or occasionally get better. https://www.sjogrens.org/home/about-sjogrens

(4) Raynaud’s is a vascular disease causing cold toes and fingers due to spasms of blood vessels. It may also affect lips, nose, or ears, but this is rare.

(5) Gastroparesis involves weakness of the muscles of the stomach, or the nerves controlling those muscles. It causes mild to severe digestive problems. Another name for it is slow stomach.

(6) Dysphagia, difficulty or discomfort in swallowing, can be as mild as feeling a lump in throat or as serious as the inability to swallow. Aspirating food is possible. Neurological disorders, including stroke, are a common cause.

About the Author

Carole Griffitts has lived with invisible disabilities for forty years.

She and her husband/caregiver live in northeast Washington state. They love nature, and she uses her scooter to sometimes accompany him on his hikes. She uses her laptop, called Expanded World, to connect with others. Her website, for and about people living with invisible disabilities, is www.navigatingthestorms.com.

July 5, 2018June 21, 2019

Chronic Illness Means Taking One Day at a Time

Life Altered by Multiple Chronic Illness Diagnosis

Chronic illness has completely altered my life. I went from a two sport varsity athlete in high school to a person who functions at a pain level that would leave most people bedridden. Now life has been consumed by handfuls of pills twice a day, at least one doctor’s appointment a week, constant pain, exhaustion, and more difficulties. After struggling for over a year to get an accurate diagnosis I finally ended up with several: Rheumatoid Arthritis, Sjogrens Syndrome, Graves’ Disease, Fibromyalgia, and Irritable Bowel Syndrome.

Seeking Sobriety and Answers

I can’t tell you when the pain started. I spent years as a full time heroin addict, and while I was using I wasn’t in pain. But every attempt to get sober left me in agony even after withdrawing from the drugs; which only lead to relapse after relapse. Every attempt at sobriety would lead me to a different doctor for an answer, but every doctor assumed it was Post Acute Withdrawal Syndrome. I knew in my heart there was something seriously wrong, but I couldn’t find anyone who believed me. Eventually I managed to get sober and continued my fight for an answer to my pain. Every doctor I saw just assumed I was looking for drugs, even when I told them I didn’t want any narcotics. I went from doctor to doctor looking for someone who believed me and would help me finding an answer. I finally found one, over a year after I began my search. A few months later I got my answer. It came with a laundry list of health problems.

Chronic Illness Diagnosis Too Much to Bare

A few weeks after getting diagnosed with fibromyalgia and rheumatoid arthritis I landed in a mental hospital for a suicide attempt. I was so overwhelmed by the idea of dealing with pain everyday for the rest of my life that I assumed I couldn’t do it. I didn’t really want to die, I later realized, I was just afraid of a life of constant pain. Fear is a completely overwhelming emotion and I was terrified thinking of the kind of life I was being forced to live.

Struggling to Stay in School

Throughout all of this I struggled my way through college. I am currently studying the prerequisites to get into the nursing program. Just this past semester I developed a serious infection that was sensitive to only five antibiotics. As it turned out I was allergic to four of them. I spent weeks covered in a rash because of constant allergic reactions. I ended up with a PICC line to take the final antibiotic that would work, which was only available as an IV antibiotic. It took three weeks on that medication to heal. Thankfully it worked and I was finally free of the infection. But throughout all of that keeping up with classes wasn’t possible and one had to be dropped.

Immunosuppressant Therapy for Chronic Illness

Once I was free of the infection I could start my treatment for the Rheumatoid Arthritis- it was an immunosuppressant. This medication, which is also used in chemotherapy, makes me sick for at least one day, usually two. Once I realized this fact my mental health took another turn for the worse. This time going to the hospital was not an option. It was only a few weeks away from finals and past the date to withdraw from the class. The doctor upped the antidepressant which caused suicidal thoughts. I decided that if the next change my doctor made didn’t help I would take my parents wrath and go to the hospital for help. Thankfully the change the doctor made worked. I was no longer suicidal. The depression remained as a hard consequence of chronic pain.

Looking for Positive Side of Chronic Illness

Everyday is a struggle to keep looking for the positive when it all feels negative. Sometimes I think the light at the end of the tunnel is just a train that’s going to hit me at full speed. And sometimes that is what it feels like. But I searched for a group of people who understand the kind of struggles I have. Thankfully I found a few and began to make friends with others who have similar challenges. I began to talk to my family members who also struggle with chronic illnesses. I created a beautiful new relationship with my mother who struggles with almost the exact same situations as me. Anyone can find help through The Unchargeables Chronic Illness Support Group.

Chronic Illness Self Care

I realized that I can’t look at my whole life at once but instead I now try to take it a day at a time and go easy on myself. I can’t control what may or may not happen in the future, but I can control what I do today. And today I choose to allow my doctors to attempt to put my body back together while I focus on what I can do to better myself. I do what’s put in front of me: run the errands, study, go to appointments, and on and on. When things get overwhelming I do some self-care. It’s hard for me to do self-care because I tend to forget about it with everything else going on. I love taking baths and writing poetry and that’s what I try to do as often as possible. Life is still hard, but every day I do something, even if all I can do that day is get dressed. I’m grateful that today I have people in my life who understand my struggles and love me through them.

About the Author

Chris Thoman is 23 years old, a college student, and lives with several chronic illnesses. He loves meeting and talking to new people, especially those who struggle with similar things as him. You can follow Chris on Instagram at https://www.instagram.com/foreverandalwaysarebel/

September 28, 2017August 12, 2019

Five Things I Don’t Admit On My Bad Days

Have you ever had a day when you just stared off into space? Not staring and thinking deep thoughts about your future, but empty. Random thoughts floating around occasionally, but nothing coherent. And definitely nothing cheerful!

This is the place I am in right now. My brain has just shut down. The chronic illness has become too much to handle at this point and my brain went bye-bye.

So, I thought I’d let you into the taboo side of pain and chronic illness. The stuff we -or at least I- really don’t want to admit. The thoughts we have when our brain and body are at their lowest.

1) I am tired.

That’s why my brain shut down. Fighting pain is hard, and those of us in daily pain don’t ever get to rest. The constant struggle of trying to stay physically in control of our pain is draining. Add to that the daily demands of running a home, a career, or raising kids and you have the perfect storm for extreme fatigue. Add extreme frustration and we crack. And it doesn’t necessarily matter who gets in the way when it happens-sorry!

2) I am sad.

Because I am in pain and I cannot control it or my reactions today. But life goes on. So does family discord. My husband and I are no different. And to be honest, I don’t always have the fortitude to deal with it, whether it’s about a burnt dinner or the several hundred bucks he just lost at the casino. I’ll end up in a puddle of tears. Pain makes everything personal and much more intense. So the small stuff becomes huge and nastiness gets easier.

3) I am depressed.

It’s hard to stay positive and accepting of a disease that causes so much pain, weakness, degeneration, loss, forgetfulness, uncertainty… I could go on, but you get the point. Obviously, I have accepted my chronic illness, but these diseases are progressive and constantly change over time, so we have to constantly readjust our acceptance of what they have done to us. But the feelings that go along with this process have to be experienced as well.

4) I am confused.

And confusion is very frustrating. You see, my body remembers everything it used to be able to do. From dancing to hiking through the woods to carrying stuff up and down stairs. So sometimes, I still think I am capable and try to do things expecting that I will still be able to. And, at this point, I usually can’t, which has really just caused me more problems.

5) I want to give up.

I know the facts about my disease. I know what my back injuries mean. I know what the future probabilities are for my disease progression and pain management. And I worry about where I will end up when I can’t care for myself. I worry because I am alone a lot already. And I’m scared. I think about giving up a lot, too. I don’t talk about it, but I think about it. We all do. It’s a way to end the pain. It’s just not a good one.

In the end, when my brain gets like this, what I really need is some sort of regeneration. It’s too easy to continue that downward slide when we acknowledge our dark side. So here are some ideas for pick-me-ups after your day or so working through the harder emotions having chronic illness brings to us all.

Watch a mindless funny movie -my fave is Zoolander!

Find funny fail shows on TV-I so love dumb criminals!

Watch kittens on YouTube-you must admit cats getting scared of hair clips is hilarious!

Bundle up and rest with aroma lotions and tea!

And remember: these “lost brain” days don’t last forever, they’re not as common as they may seem, and they do not control you. After 20+ years of this, the silver lining seems to be the fact that by letting these days happen, you allow for a mental reset. The negativity gets acknowledged, then let go. And that’s exactly what needs to happen in the long run!

ABOUT THE AUTHOR:

Born and raised in Rochester NY, I was diagnosed with Sjogren’s 4 months after my second son was born. My kids are now 21 and 23 years old. I have since developed MCTD, Inflammitory Arthritis, and Fibromyalgia. My medications, in turn, have caused me to endure two back fractures. I raised my kids, worked a career for over 30 years, and been a wife to my husband of 27 years all while being diagnosed with an autoimmune disease for 22 of them. I can no longer work but I do volunteer at an animal rescue organization as a kitten cuddler and I write about my experiences with my diseases while wrangling our one rescue dog and three rescue cats.

March 17, 2016June 21, 2019

Sjögren’s Syndrome

Sjögren’s Syndrome, named after Dr Henrik Sjögren a Swedish ophthalmologist, is a chronic autoimmune condition which destroys the lacrimal and salivary glands, which produce tears and saliva.

The damage is done when the body’s own white blood cells attack the glands, and results in conditions known as ‘dry mouth’ and ‘dry eyes’ (xerostomia and keratoconjunctivitis respectively).

Although the condition can be classified as either primary or secondary (depending on the absence or presence of any other connective tissue disease) this has no bearing on the particular symptoms a patient will experience, nor on the severity of those symptoms.

Signs and Symptoms

The single most significant symptom of Sjögren’s Syndrome is generalised dryness – particularly of the eyes and mouth, although this may extent to the skin, nose and other organs of the body, including kidneys, lungs, liver, and even the nervous system.

It is possible for Sjögren’s Syndrome to develop over a number of years without being diagnosed, as these common symptoms are often attributed to a dry environment or reaction to food or medication – or simply as a side-effect of the aging process.

Some patients will develop only mild symptoms, whilst others may experience more serious manifestations of the disease. As with other autoimmune diseases, Sjogren’s Syndrome can go into remission spontaneously or may require treatment.

Causes of Sjögren’s Syndrome

Like many autoimmune conditions, the exact causes of Sjogren’s Syndrome are not yet fully understood. However, existing research suggests that it is brought on by a combination of genetic, environmental and other factors.

Genetic Factors

Families of those suffering from Sjögren’s Syndrome have been seen to present a higher than average occurrence of other autoimmune diseases which leads experts to believe that there is a genetic factor involved.

Hormonal Factors

Sjögren’s Syndrome is more commonly observed in female patients, suggesting that there is a hormonal element in its causation. Studies have suggested that estrogen-deficiency can be one contributing factor.

Other external factors, such as glandular viral infection, may also be linked with the onset of Sjogren’s Syndrome, although research is continuing in this area.

Diagnosis

Diagnosing Sjögren’s Syndrome can be complicated by a number of factors. In particular, as the condition generally presents in those aged over 40, the early symptoms of dry eyes and mouth are frequently dismissed as part of the aging process.

Because other symptoms can affect different areas of the body, many patients initially seek with their symptoms help from different specialties, making diagnosis difficult.

In addition, many of the symptoms are also associated with other autoimmune diseases, further complicating the diagnosis process.

There are a number of tests that can be administered to diagnose Sjögren’s Syndrome. The ‘rose bengal’ test measures the function of the lacrimal (tear) glands by placing a non-toxic dye on the eye. The Schirmer test uses a strip of filter paper placed under the lower eyelid to collect tears – its wetness is then measured to determine whether production of tears falls into the diagnosable range.

Similarly, the function of the saliva glands can be measured in a test which involves the patient being asked to spit as much as possible into a cup; the volume is then measured to determine whether the glands are functioning normally or not.

Treatments

Currently there is no cure, nor is there any specific treatment that will restore normal function of the saliva or tear glands.

Consequently most treatment associated with Sjörgen’s Syndrome is designed to alleviate the symptoms are reduce discomfort.

Treatments to increase or replace lost moisture, such as artificial tears, can be prescribed to reduce discomfort around the eyes. In more severe cases, goggles designed to increase ‘local humidity’ around the eyes can be worn.

Cyclosporine may be prescribed to reduce the inflammation which inhibits tear production, and other drugs may be used to stimulate salivary flow.

For musculoskeletal symptoms it is possible to prescribe non-steroidal anti-inflammatory drugs and for patients with severe symptoms or related complications corticosteroids and other immunosuppressive drugs are sometimes prescribed.

Immunosuppressants are also used to treat systemic symptoms associated with Sjögren’s Syndrome, such as chronic fatigue and joint pain.

Often overlooked by patients is the need for preventive dental care. The lack of saliva in the mouth can have severe consequences for both teeth and gums, and xerostomia creates a breeding ground for bacteria which can lead to painful cavities. Sadly, many patients leave this care too late and it is not uncommon for dentists to see patients with severe and untreatable cavities.

Prognosis

Although studies in this area are still rather limited, patients with Sjögren’s typically experience only a slightly below average life expectancy.

However, Sjogren’s Syndromeit is often associated with other diseases which may impact on mortality rates, in particular a higher instance of non-Hodgkin lymphoma.

Facts and Figures

● 3rd most common rheumatic autoimmune disorder
● 500,000 to 2 million patients in the USA
● May affect up to 3% of the population globally
● 90% of patients are female
● Average onset between 40-60 years of age
● Occurs in 30-40% of patients with rheumatoid arthritis and 10-20% of patients with systemic lupus erythematosus.

Conclusion

Whilst Sjögren’s Syndrome is categorised as an ‘incurable’ condition, its symptoms can largely be managed through a combination of medication and lifestyle changes. As with other conditions which can result in chronic fatigue, depression is a risk and patients should make friends and family aware of their condition in order to ensure a solid support network. Although the symptoms of Sjögrens can cause complications, barring more serious secondary illnesses patients can expect to live a normal lifespan.

March 9, 2016March 12, 2016

Spoonie Story: Sherry

My name is Sherry. This is the first time i have written down all of the events that led me to where I am now.

When I was around 13 I started having severe bladder and kidney infections. I went through testing and the drs never really had a solid answer why. When I was 17 I was hospitalized for 10 days for what the drs called a bad virus..i had a bladder, kidney, upper respiratory and blood infection. I was septic and resistent to antibiotics. This is when I felt my body change and go haywire. Let me add here that I was a very active teenager and even got into weight lifting in my late teens.

Then when I was 22 my mom died in a car accident and I unfortunately was following behind her in my car. It was horrible. While in therapy I learned how much anxiety I had.

I was in dental school studying to be a dental hygienist when I got pregnant with my first daughter. That’s when the hives started. Just one here and there nothing too serious. When my daughter was a couple months old we got custody of my 7 year old niece (my sister was a drug addict and passed away in 2009 from her disease). I stayed in school and had my second daughter. I was always tired and stressed but like all the stories I have read, passed it off as just being overwhelmed.

5 years after my mom died I lost my step father who raised me. I graduated from hygiene school and started to work full time, 16 hour days right away. I ended up having a severe gall bladder attack and then removal.

5 years after my step father died my father died. All my parents were under the age of 60 and i was 33 and parentless. I was getting sicker and sicker but blamed it on stress.

In 2007 and for close to a whole year I suffered with the worst hive episode!! I was covered and miserable. I went through all of the allergy testing because of course that’s what the drs said was wrong. The only thing that would calm them down was steroids.

Fast forward to 2010 and I was involved in a bad car accident and that sent me spiraling out of control. Severe pain, numbness, headaches, herniated disks etc. Finally in 2013 my spine dr sent me to a rheumatologist to get tested for fibromyalgia. I proceeded to tell him about my crazy medical past and he was intrigued. He sent me for the testing and long story short diagnosed me with fibro, SLE (lupus) and RA.

Last spring I got extremely sick again and was hospitalized for 12 days. That started with the flu but i also had an enlarged spleen and liver and was resistant to antibiotics. I also have an essential tremor that started while in the hospital. They also found bronchiactisis in both lungs. I was also diagnosed last fall with Sjrogens by my opthamalogist.

So here we are now. I have not practiced for a year. I am sick, nauseous, blurred vision, shakey, headaches, painful joints etc. My life has changed DRAMATICALLY over the last year. The emotional and financial toll has been so hard but I am so incredibly blessed with the most amazing husband, daughters, grandbabies and friends!!

I am thankful for this devastatingly beautiful life!! Thank you all for listening to my long story and for all of your support through these crazy years!!! ❤

February 29, 2016March 12, 2016

Spoonie Story: Angie

It started with a phone call. “Ma’am I’m sorry to tell you this but you might have rheumatoid arthritis, we need you to come in as soon as possible for further tests.” My heart sunk. What now? What will become of my future? Do I have a future? What about my son? Who will take care of him if I’m sick? I knew nothing about rheumatoid arthritis other than the joint deformities and pain.
Pain.

Now a days I’ve learned to cope with the pain. There’s pain and then there’s pain that reduces you to nothing but tears. In the beginning I thought the pain was bad but I had no idea what was to come.

My name is Angie or you might see a lot of my screen names ” bttrflyculture “. I am 22, I’ll be 23 in April and I’m married to my hubby and we have a beautiful 3 year old boy. I got diagnosed with Sjogrens Syndrome in January of 2015. I guess my body can’t make up its mind if I have lupus or RA or both because not all my symptoms line up.
I originally went in to see the doctor because I had bad skin irritation and thought my gall bladder was acting up.

When I was pregnant I had cholestasis and caused nasty itching. My husband and I were trying for another baby at this time so it made sense. Maybe I was pregnant? So I went in, got blood work done and was told it was probably dry skin and got sent home. A few days later I get a call and they said my makers were elevated and it’s possible I had rheumatoid arthritis. I thought “No this has to be a mistake. I’m only 21. There’s no way. I’m too young for this.” Then some time went by and all the pain began. I couldn’t open containers, jugs, doors, my hands were curled up and in pain. We started with just plaquenil and a saliva medication which for the life of me I can’t remember. (Thanks brain fog!)

Fast forward to March:
My husband and I never thought we conceived back in January. I had taken multiple pregnancy tests and they all came out negative. After I got my diagnosis, obviously we stopped trying and I got back on my birth control. I started feeling funny towards the end of February and started having a strong craving for sweets (banana pancakes to be specific) and blue Gatorade. I took a test and to my surprise it came out positive. My heart sunk. I was excited, nervous, scared. All of the above. On Friday I started getting some funny looking discharge but I didn’t think anything of it and went about life. Saturday, went to a family party and told everyone I was pregnant. Everyone was so happy and excited for us. Then life happened.

Sunday I went to the ER because of the discharge and they ultrasound tech said he didn’t see a heartbeat but I was 7 weeks and 3 days and that was normal. The doctor said the discharge was from an infection and gave me a gel to use and said to see my doctor asap. I called my OBGYN and they said they couldn’t see me til next week. Appointment day finally came and I went in and they told me If there was no heart beat then I had lost the baby already. I wanted an ultrasound just to make sure. I didn’t want to believe it. I didn’t even cry because I think my body was in such shock. I got all hooked up on the ultrasound machine and there she was. My baby was just there and not moving at all. Just still as could be. I saw she because I feel in my heart it was a girl. Even to this day my son talks about his sister and we’ve never talked with him about any of this.

On March 18th 2015 I had to take the pills to induce the miscarriage because my body wouldn’t register that I had a miscarriage. It was the most heart breaking night and painful night. I’ll never know why I lost the baby. I have a feeling it was either all the medication and medication changes or my body just attacked the baby. I think after that I just really wanted to give up on this body that had betrayed me so much already.

A year later and the oral medications still aren’t doing enough to help me so I have to give myself weekly injections of methotrexate and if that doesn’t help then infusions will come next. After that I don’t know what other options there are. I feel as though I’m running out of options.

As spoonies, we go through all these real life, raw moments and we keep going. We are strong warriors. If you have gone through this or worse then I salute you. You keep your head up and I hope my story will reach someone and help someone believe they aren’t alone. All I hope to accomplish with my writing is to help someone get through their rough time. This is all for you.