Hyperhidrosis and The Realities of Living with Excessive Sweating

Living with hyperhidrosis can be challenging. The contents of this article may seem like too much personal information about bodily functions for some people, however, I feel that hyperhidrosis is something that is not talked about a lot in the chronic illness community. We need to delve into the TMI (too much information) realm to discuss it.

I used to think that I was a gross freak of nature for sweating so much, but after connecting with other people who experience a similar thing I realized that it is more common than I thought.

What is hyperhidrosis?

Hyperhidrosis is abnormally excessive sweating that is not always related to heat or exercise. Someone with hyperhidrosis may sweat so much that it soaks their clothes and drips down their face and hands. People normally sweat when they exercise, are hot, are anxious or under stress. The sweat that accompanies hyperhidrosis far exceeds this normal level of sweating. Hyperhidrosis can also be made worse by factors such as heat, exercise, sweat, stress or anxiety.

Primary Focal (Essential) Hyperhidrosis

The most common form of hyperhidrosis is primary focal (essential) hyperhidrosis. This occurs when the nerves responsible for signalling your sweat glands malfunction and become overactive. This type of hyperhidrosis usually affects the palms of your hands, the soles of your feet, and in some cases your face. There is no determined cause for this type of hyperhidrosis, however, it may be hereditary as it runs in families.

Secondary Hyperhidrosis

Secondary hyperhidrosis occurs when it is a symptom of another medical issue. It is more likely to cause widespread excessive sweating than primary hyperhidrosis. Conditions that may result in excessive sweating can include:

Thyroid issues
Diabetes
Infections
Some types of cancer
Heart issues
Nervous system disorders

Some medications can also cause excessive sweating.

Experiencing Fibromyalgia with Hyperhidrosis

My secondary hyperhidrosis is caused by my severe fibromyalgia, which is a central nervous system disorder. While some of the medications can cause secondary hyperhidrosis, my experiences with excessive sweating began in childhood, long before I started taking these specific medications, but after I started suffering from chronic pain.

Of course, weight can impact how much you sweat, and I am overweight. However, as said above, I have been experiencing this excessive sweating since before I was even a teenager, and I weighed nothing close then to what I weigh now.

How Hyperhidrosis Impacts Social Situations

Work: If your job is in any way stressful and you deal with hyperhidrosis, you may find you sweat a lot at work. If you work around others, such as in a customer relations role or in the office, the excess sweating may make you anxious about how others may perceive you. This anxiety may impact your productivity if it becomes severe. Hyperhidrosis may also impact your opportunity of gaining new employment if it becomes problematic during job interviews. Since sweating is usually a sign of anxiety, even the calmest person with hyperhidrosis may look extremely anxious to the interviewer. This could have a severe impact as to whether you are chosen for the job. Shaking hands can also be a source of anxiety particularly if you have primary focal hyperhidrosis which causes sweaty palms.

Night clubs: As a young adult, every once in awhile I like to go to a night club and dance with my friends. Even though I find this extremely draining, I like to experience just a few hours of normality. Many nightclubs are crowded and warm. Hello Extreme Flare! It can be difficult to enjoy myself knowing that I have sweat visibly dripping down my face. This can also impact my chances of meeting new people and starting new relationships. , The excessive sweating may cause people to judge me before they get to know me. This is definitely a disadvantage for the single girl like me.

Any social occasion: Hyperhidrosis can impact any situation. Going to a café, a theme park, the beach, the movies and attending school are all different for a person that has to consider excessive sweat. Hyperhidrosis and extra sweating can become a source of anxiety at any time, but when it’s flaring especially when it’s flaring.

Tips and Tricks for Coping With Hyperhidrosis and Excessive Sweating

Now that I’ve listed the ways hyperhidrosis may negatively impact social situations, I will now tell you my tips and tricks for coping with hyperhidrosis and living with excessive sweating that I have developed throughout my own experience.

Waterproof Makeup

The facial sweating that is the result if hyperhidrosis can ruin any makeup you may be wearing. I personally love wearing makeup every once in a while for nights out or on a day I feel like dressing up. Unfortunately, if I’m not careful with what products I use my makeup can end up dripping down my face. Utilizing a good primer and a waterproof foundation and concealer are a good start. Make sure your mascara and eyeliner is waterproof if you enjoy using those products. You can even find inexpensive brands at your local retailer and online. Many brands meet these suggestions.

Dressing in Light Layers

Very many people live in a place where the weather can go from cold to hot within a few hours. Dressing in light layers is the way to go. If you also suffer from temperature control issues spring layering is good strategy for you, too. Utilize cardigans because not only are they light but they also don’t take up too much room in a bag while out and about. If it is chilly in the morning wear a t-shirt and a cardigan over top. It is easy to take take it off later on in the day.

Portable Fans

This may seem a bit extreme, but if you’re prone to over-heating on a regular basis like I am, a portable fan can be invaluable. I got one for $8 from The Warehouse, and I love it. It’s rechargeable by USB and has multiple levels of intensity. This would be perfect for days at university during summer, long days of traveling, or days when you’re spending a lot of time outside in the heat.

Apply Multiple Layers of Antiperspirant

With secondary hyperhidrosis the sweat under your arms can become excessive and can be very hard to manage. Recently I have started using multiple layers of antiperspirant using two different types and I find this helps well for summer. I use a cream antiperspirant under my arms first and then a spray antiperspirant on top. While this does not completely stop underarm hyperhidrosis it does make it more manageable. There are some more aggressive options you may discuss with your health provider in some places.

Body Wipes and Shower-less Body Wash

If you have hyperhidrosis and live with excessive sweating in addition to chronic illness then managing your hygiene can be very difficult. Bathing, for example, can be very difficult for those who experience symptoms such as chronic pain and fatigue. Some days many Chargie’s do not have the energy to shower. Other days I may end up perspiring a lot requiring multiple showers. In these cases it is convenient to use deodorant body wipes or shower-less body wash. Deodorant wipes are targeted especially at lessening odor. Shower-less body wash can be used without washing it off and do the same thing.

Many people like to use baby wipes in the place of deodorant body wipes. I find that baby wipes don’t work very well in comparison. Products specifically targeted at killing sweat caused germs and odor do a much better job, and I find that body wipes are more moist with product, therefore you end up using less wipes.

When you experience hyperhidrosis and living with excessive sweating it can feel very isolating. However, there are things you can do that make coping with it a bit easier. It was also helpful for me to learn that isn’t something that I go through alone. Surrounding yourself will people who understand your condition can also make a huge difference. Having a non-judgmental environment can become your social safe space. I know that when I start sweating excessively my close friends won’t judge me for it. Therefore I never become anxious about it around them.

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

April 22, 2019April 13, 2020

Pancreatic Cancer The Quick Killer

Subject of story in formal portrait taken outdoors with family

Pancreatic cancer is one of the fastest growing cancers in North America. According to the American Cancer Society, around 3 percent of all cancers in the United States are pancreatic cancers. In 2018, they expected around 55,440 people to receive a diagnosis of pancreatic cancer.

Fast Friends

Nobody thinks about Pancreatic Cancer when they meet someone new. The memory of the first time we met Sweet Lou is as clear as yesterday. There was no way to know then that he would be taken away so quickly. Like so many things in life what seemed like a negative situation turned into something positive. We met some of the best humans we have ever known when a landlord defrauded us. Lou was one of those people.

Determined this landlord situation was certainly a sign that the recent relocation to Colorado was doomed from the beginning caused much tension in my marriage. Desperation set in to move back to Georgia where the support of parents and siblings would be certain. Plus I was surprised my husband decided to share this personal information with people we had just met – that caught me off guard. But, when I stared into the friendly faces of our new neighbors that night I told the truth. Raising kids is hard without family around. Sweet Lou said, “We’ll be your family.”

As you may have guessed this story does not have an entirely happy ending. As I write this now Lou has been gone almost a year.

The Job of the Pancreas

The pancreas is a spongy, elongated pear-shaped gland organ. It is located in the abdomen and helps your body digest food and regulate insulin. The pancreas excretes digestive fluids into the intestines and works with the liver and gall bladder to help break down foods. The most important function is to regulate the insulin in your body. “Maintaining proper blood sugar levels is crucial to the functioning of key organs including the brain, liver, and kidneys (Columbia University, 2019). Most people probably do not think much about the pancreas unless they are a fan of Patrick Swayze or Alex Trebek.

Pancreatic Cancer Statistics

Pancreatic Cancer is the 3rd leading cause of cancer-related deaths in the United States
More people die from Pancreatic Cancer than from Breast Cancer
The average lifetime risk of Pancreatic Cancer in the US is 1 in 64
The five-year survival rate for all forms of Pancreatic Cancer is just 7%
The one-year survival rate for all forms of Pancreatic Cancer is 20%
Death rates for all cancers have declined except for Pancreatic Cancer which has remained the same in the last decade.
Every day in the United States 155 people will be diagnosed with Pancreatic Cancer. Statistics can make it easy to forget that each one of them represents a human being: a father, mother, son, sister, husband, or friend like Sweet Lou

Behind the Pancreatic Cancer Statistics

When it comes to cancers two questions are usually on everyone’s minds. What are the risk factors? And, how do I prevent it? There are certain risk factors for Pancreatic Cancer that you cannot control. Some are a possible genetic predisposition, exposure to certain chemicals at work, age, gender, race, diabetes and chronic pancreatitis. Some factors within our control are thought to contribute to an increased risk and include obesity and tobacco use. Others such as diet, a sedentary lifestyle, infection, or coffee and alcohol consumption are not as clearly connected.

Most advocacy groups will point out that a healthy lifestyle may reduce your risk of getting certain types of cancers. This point should not be mistaken to mean that any individual is responsible for their personal cancer diagnosis. At the end of the day we are all just trying to balance our lives between what is good and what is good for us. In Lou’s case he was not at a high risk and was in generally good health.

Warning Signs

One of the most difficult aspects of Pancreatic Cancer is that there are few early warning signs. This is complicated by the rapid rate with which the cancer spreads. The symptoms are vague: pain in the abdomen or back, weight loss, jaundice, loss of appetite, nausea, changes in stool, pancreatitis or recent-onset diabetes.

Sending your husband to the doctor every time he has a stomach ache (as I have done the past year) is not very practical. Here is where it is important to know your body. Pay attention to what is normal personally. If any of the known risk factors or family history is a possibility it is better to err on the side of caution. The Mayo Clinic recommends a person “see your doctor if you experience unexplained weight loss or if you have persistent fatigue, abdominal pain, jaundice or other signs and symptoms that bother you.”

Diagnosis and Treatment

Imaging in the form of CT, MRI or PET scans are the first steps a doctor will probably take after a physical exam. There are endoscopic procedures if a biopsy or closer look is necessary. A blood test called CA-19-9 is available but is known to be fairly unreliable. Most doctors will record levels before and after treatment, none-the-less. Again, it is important to remember the success in beating Pancreatic Cancer depends in large part on early detection. So, get to the doctor if you suspect a problem.

Once Pancreatic Cancer is diagnosed the doctor will attach a stage level between I and IV to assign a seriousness of the disease. The lower the stage the better. The most effective procedure is thought to be the specialized surgery called the Whipple procedure. Other surgeries including the removal of the entire pancreas are sometimes done. Chemotherapy and radiation are other traditional methods of treating all cancers including Pancreatic Cancer. There are many clinic trials ongoing right now that have shown to increase a patient’s lifespan.

Pancreatic Cancer Palliative Care

Palliative Care is the next step. This is the stage a patient and their family reside in between ‘there is nothing more we can do’ and hospice, or end of life care. Palliative care encompasses a wide range of modalities designed to help a patient and their loved ones cope and be as comfortable as possible. They may also help a patient consider whether actively pursuing trials is a good idea. Alternative therapies like acupuncture may help with pain. Therapies like art and music help manage emotions. And, spiritual counseling can help many manage the complex emotions that accompany a terminal diagnosis.

Pancreatic Cancer Unspoken Survivors

The survivors of pancreatic cancer are most often those left behind when a loved one passes. When I reached out to Lou’s Lady here is what she offered:

“I guess I would say do your research, get second opinions or third. Utilize clinical trials as they really do prolong life. But weigh the pros and cons when it gets towards the end as sometimes keeping someone alive longer isn’t more important than spending quality time. Go on vacation or do things that are important to you and your family. See people and make memories when you can. But don’t be afraid of offending people by setting boundaries of what the patient and caregiver can manage. Enjoy the time you are given and say everything you need to say. That goes both ways. The time you are given goes by quickly.”

Pancreatic Cancer Means Saying Goodbye

For my part, I have to add that one of my greatest regrets is not getting back to Colorado in time. Our family did eventually make our way back to Georgia. Our daughter is a Chargie with POTS and life seems complicated for us sometimes. A combination of our difficulty accepting the truth and the complications of leaving behind a chronically ill teenager for a trip out of state had us wait until it was literally too late. By the time we landed in Colorado, Lou was actively dying.

It had been suggested to us maybe we wait until the funeral. Two trips was not feasible for us. Given the chance again, I still would have chosen to try to make it in time to see him alive. Still, getting on that plane to come home without seeing him was one of the saddest days of my life. I will always regret that we never got to tell him how much his friendship meant to our family. Within a few days we got the message he was gone. Because of the amazing man he was his legacy still lives on in innumerable ways. He will always missed.

About the Author

Author T.J. Madden for The Unchargeables

TJ Madden has been a regular volunteer with The Unchargeables community wearing many different hats. She is a Caregiver for a Chargie with Dysautonomia. You can find her on Instagram sharing her life as a reader, writer, teacher, baker, chicken soup maker, and fighter for all things healthier, stronger, kinder and better than yesterday here.

November 14, 2018November 14, 2018

When Diabetes Drugs Go Wrong

Pamela Jessen writes about a severe side effect she suffered from a diabetes drug.

I have been living with Diabetes Type 2 for over 8 years now, after being diagnosed in 2010 by my family doctor, Karen Badenhorst, while living in Calgary, Alberta, Canada. I had been going for regular blood work because of chronic pain issues I have, including Fibromyalgia and osteoarthritis, and she was concerned about some of the numbers she was seeing.

Dr. Badenhorst decided to test my A1C numbers – the numbers that average out your blood sugars over a 3 month period of time. She did this for a full year for me and when we discussed this, I was appalled to discover that my number came to 7.8%. The normal range should be between 4.5-6%.

Some of the symptoms of having a high A1C include:

• Being very thirsty and tired
• Blurry vision
• Losing weight fast
• Urinating frequently

Very high blood sugar may make you feel:

• Nauseated or cause you to throw up
• Dizzy or faint
• Lose too much fluid from your body (sweating)

Dr. Badenhorst decided to put me on Metformin, a “firstline” drug for Diabetics who are going to be managing their illness with diet, exercise and now medication. I did that for about a year at a fairly low dose of 500 mg three times daily, and then we increased the dosage to 850 mg three times a day for the next couple of years with no problems. My blood sugars looked better, the A1C numbers came down to a respectable 6.3% and I was left feeling pretty confident we were on the right track.

The Story Begins

In September 2013, my husband and I decided to move to Victoria, BC from Calgary, AB. The winters in Calgary were starting to really affect my health and we knew that Victoria was a place we’d always wanted to live. We went without a job for Ray to come to – we just prayed and trusted that God would provide. We rented an apartment sight unseen in the Vic West area of the city, and rented out our townhouse in Calgary. And then, with a leap of faith…we headed West with our cat, to adventures unknown! Upon arriving in Victoria, our apartment turned out to be just fine and Ray was working within a month of our being there. We explored, went shopping, bought necessities, explored some more and got to know our home town.

I discovered a fabulous group for volunteering in the Fall of 2013, called Patient Voices Network. It’s a place where ordinary people can have a say in how Health Care can be changed in BC through volunteers acting as Patient Partners. When a Health Care partner needs the voice of a Patient Advocate for an engagement they are involved in, they can reach out to us to find the appropriate person(s). I’ve been active in numerous endeavours so far and was pleased that my health was staying fairly stable so I could enjoy it!

Unfortunately, in early 2014, my A1C numbers started to change to the higher range again, and my new doctor on the Island, Dr. Gary Leong, and I had a discussion about what the next steps were. He suggested that there were other drugs we could try and we decided on one called Januvia. It was newer on the market and so I started to take it with the hope my numbers would come down again to an acceptable level.

A Trip to the Emergency Room

One night, towards the very end of February, I wasn’t feeling well. I had started to develop some chest pain, much like the pain I’d felt before my gallbladder had been removed. It was a crushing sensation in my chest and going through to my back, only this time, I was feeling pain in my jaw as well. Normally, I’m pretty stoic about chest pain, because I’ve had experience with Costochondroitis, which is inflammation around the rib cage, so I tend to ignore chest pain as being anything too serious. This time though I was starting to get a bit worried. I was laying on the floor on my back with a Magic Bag on my sternum area, hoping the heat would relax any spasms, but relief was not to come. Meanwhile, my husband Ray was on the internet looking up heart attack signs in women. He comes back with a print out and says, “I’m taking you to the Emergency Room”.

I of course started protesting, but not all that effectively, because I was definitely getting scared. The pain was getting stronger, not subsiding, so in the end, I agreed to go. We got in the car (in hindsight, we should have called an ambulance), and off we went with him calm and strong, and me starting to panic. Of course, it was in the wee hours of the morning, but it was a weeknight so the ER was quite empty when we got there. The triage nurse called me forward right away and as soon as I mentioned the chest and jaw pain, they had me moved into a bed within 5 minutes of registering.

A Serious Problem

Before I even knew what was happening, they were wheeling in an EKG machine and putting little monitors all over me so they could get a reading of my heart. It turned out my heart was just fine, but my chest pain was through the roof now. The nurse Jeff came in; we talked and I told him what was going on. He gave me a dose of nitroglycerin under my tongue and I started laughing because I couldn’t lift my tongue up for him…I was so confused on what he wanted me to do. I finally got it right, but even after 3 doses of nitroglycerin, nothing happened and the pain still sat there, crushing me. My jaw was aching terribly, as well as the area underneath, and I felt like I wanted to throw up. I told Jeff this, but I also told him I am not physically able to vomit, because of a stomach surgery I’ve had in the past called a Nissen Fundoplication. This led to me needing an NG tube placed down my nose and into my stomach to empty my stomach contents. I’ve had them done before – they’re not pleasant but I know how to swallow to get them down, so Jeff prepared everything and then started the procedure. He brought me water to drink to help with swallowing and at one point, I had to get him to stop for a moment, but it was over in no time. I immediately started to feel better as my stomach emptied, but my chest was still aching and we were no closer to getting answers.

Jeff started an IV and the ER doctor ordered Fentanyl for me, as I’m allergic to Morphine. We talked about all my medical issues, what meds I took, and the fact I just started the Januvia, which was the only thing that was new. The ER doctor wanted a CT scan to make sure there was no Aortic Rupture happening, so that was quickly scheduled. Then the Gastroenterologist came to see me and said he wanted to see if my Fundoplication was causing the problem so he wanted to do an Endoscopy. This was big time serious stuff happening and I can’t believe that I was considering just laying on the floor at home with a Magic Bag, thinking it would just pass!

A Reaction to a Diabetes Medication

I ended up back in the ER room after having all these tests done (and with the NG tube finally removed) with less chest pain, but no answers as to what caused it. My Fundoplication looked good and there was no sign of an aortic rupture, so the only conclusion the doctors came to is that I suffered a severe allergic reaction to the Januvia, which lists chest pain as one of it’s serious side effects. I was admitted to the hospital for 2 more days altogether so my system had time to just rest on liquids and stomach relaxers as well as muscle relaxers. Gradually, FINALLY, the pain in the chest and jaw went away.

There was something else that came from this hospital visit too. Because of the CT scan that was done, the Hospitalist (the Doctor on call for the Hospital) discovered that I have another health condition that I didn’t even know about – something called D.I.S.H. which stands for Diffuse Idiopathic Skeletal Hyperostosis. It’s a type of bone spur that is growing on my Thoracic Spine, but instead of being a normal spur, this type looks like melted candle wax dripping down the spine instead. It explains the back pain and stiffness I’ve felt in my middle back for such a long time that I’ve just put down to arthritis. Now I know it’s a completely separate condition – and just another one that causes me pain. Oh joy!

I went home after 3 days in hospital and now have Januvia listed on my Medic Alert bracelet as an allergy. It amazes me how this simple Diabetes drug could have had such a devastating impact on my body, when the Metformin did nothing like that at all. It goes to show how different classes of medications can be so different when they’re all designed to do the same thing…lower blood sugar. After this incident, Dr. Leong and I decided we’d go right to insulin and so now, I inject 14 units of long acting insulin every night before bed. I’m not afraid of needles, so doing my injections isn’t a problem for me. I don’t enjoy it, but it’s necessary, so I just do it, the same way I test my blood. It’s part of what having Diabetes is all about.

A Pill Can Make You Ill

If you ever feel ill or “different” after starting a new medication, whether it’s for Diabetes or something else, please be aware that serious side effects can and do happen. Keep an open mind that this could be the case for you and talk to your doctor or go the ER closest to you if you have any concerns about what you’re experiencing. I’m not sure what might have happened if I’d just stayed home, but I am sure it wouldn’t have been pleasant. Trust your instincts – medications can cause serious harm even when taken correctly.

Remember – A pill CAN make you ill. Be smart and get medical attention when something doesn’t feel right. I’m glad I did.

About the Author:

Pamela Jessen lives in Langford, BC, just outside of Victoria. She is happily married to her amazing husband Ray and they are proud parents of two grown kids and three wonderful grandsons. Pamela is formerly employed as an Administrative Specialist and is a Certified Event Planner. With her career behind her and now being on Long Term Disability, Pamela is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness. Her blog is called There Is Always Hope. She is currently a Moderator for a blogging group on Facebook called Sharing Inspiring Promoting Bloggers.

January 5, 2017January 22, 2017

Fair- Where you get cotton candy!

One of the biggest challenges we face as “Unchargeables” is pain. Whether it’s from disease or injury- pain is an unfortunate part of our daily lives. We have our good days and we have our bad days but pain is still reality for us.

My pain comes from my Medullary Sponge Kidney, where I make daily kidney stones, have kidney/bladder spasms and frequent infections. I also have all over muscle pain due to the lack of cortisol from Addison’s disease. This pain is what I classify as senseless pain. There is no healing going on, no purpose in it. It is just pain. It has no function other than the result of something that is wrong.

Recently I have discovered there is another form of pain. This pain is not senseless. This pain is for a reason.

Since starting physical therapy, I feel like I have been hit by a bus. But for the first time in months, I’m moving my body and out of bed! My pain has increased, but I feel like this pain has a purpose. I hurt but I am getting stronger, building my muscle mass back and will be able to walk again! Every painful exercise, stretch and movement will be worth it in the end.

That being said, the senseless pain will still be there whether I can walk again or not. Some days will still be rough.

My mind continues the dance between hope and despair over this reality.

The only thing I can do is create purpose within the senseless pain.

Unfair is not a strong enough word to describe chronic illness. I can remember my students whining to me saying “But that’s not fair!” To which I would look at them and reply, “Fair is where you get cotton candy, that is the only place fair exists in life.”

Daily pain is not fair.

Chronic Illness is not fair.

Life, my friends is not fair.

Purpose is not found, it is created.

So I am choosing to create a purpose within the senseless pain.

Out of suffering comes compassion,

out of compassion comes love

and love can change the world!

I want to live in the focus of love and not my pain.

December 30, 2016December 30, 2016

Backwards Pants and Physical Therapy

Yes, you read that right…..

Backwards pants.

Since my most recent relapse, I have developed an unfortunate amount of muscle atrophy. With the increased steroid dose and post surgery recovery, I have lost the ability to walk longer than 10 feet.

At 24 years old, I feel this is unacceptable. So this week I have started physical therapy!

I was very anxious going into my evaluation. My biggest fear was I would have some overbearing physical therapist that would not understand the dangers of adrenal insufficiency and I would end up in the hospital from being pushed too hard. I feared my body would crumble after being bedridden for six months. I feared another adrenal crisis.

The reality of my evaluation could not have been further from my fears. The physical therapist took an extensive history from me and assured me that we would proceed at my pace. She instructed me to let her know if I felt too stressed or too much pain. Upon reviewing my medication list, she informed me she had been placed on steroids for a few months and understood the struggles. She sympathized with me and expressed that she couldn’t imagine the fate of being on steroids for life. Her compassion was comforting.

My assessment astounded me with how much atrophy I have truly developed. I discovered my left side only has 30% range of motion and my leg muscles are only functioning at 3%. So it looks like I started physical therapy just in time.

The exercises she did with me were slightly painful, but I felt a sense of accomplishment to be moving again. I saw the true reality of my physical condition. I am weak now but I will get stronger.

She sent me home with an exercise regiment and I will see her twice a week for the next two months. I am very sore, but I know that I am on the road to better function!

So where do the backward pants come in?

I got home, only to be told by my family that my black, stretchy yoga pants were on backwards and also inside out….drawstring and tag hanging out for all the world to see. I could not help but laugh. I am sure I made a great impression and appeared really intelligent with my backwards pants.

Lesson I learned today- I should not have been so anxious about physical therapy. I have the power to set limits and say no!

I also learned to check out what I am wearing BEFORE I leave the house.

Chronic illness warriors, we can’t be afraid to try new things for better health. If you know in your heart there is something you need to improve your life then GO FOR IT.

I was amazed at how one day of physical therapy gave me the hope that I will be able to walk again. There are tools and resources out there for people struggling with their health. I never thought I would have the need for physical therapy, but I am so glad it is an option.

If you feel out of control, let me just assure you that you have not exhausted every option. There is always hope, we just have to find it.

Here’s to better days of more function ahead!

September 14, 2016September 2, 2016

I had to go to to DETOX! Addiction vs. Dependency

By Nancy Thornton

Wow. Yeah. I had to go to DETOX.

How I ended up here is a long story with lots of twists and turns. I guess the root causes would have to be my autoimmune disease and chronic pain. Those two are always giving me new experiences, most of which I’d like to have postponed indefinitely. Trouble is, I don’t get to choose a lot of what happens inside my body, such as the cascade of drug reactions I had this year.

I ran out of my regular NSAID and decided to try Aleve. I got hives after 3 days. Shortly after that, Indomethacin, an NSAID I had taken for years began to make my heart race every time I took it. My rheumy switched me to Nabumatome.

The next week, I was exposed to both flu A and B at a kid’s birthday party. I came down with what was presumably A first since my daughter tested positive for that strain and it was very hard on both of us. In my case it turned into bronchitis, due to my immune- lowering drugs. I had one course of antibiotics that didn’t do the trick. A second, Cephaclor, made my face numb for a day but I ignored it. By the forth dose numbness was also in my left hand a half hour after taking it. Then by an hour after, numbness in both hands was creeping up my arms. I was glad I had read the info about the new drug so I was aware this was an emergency. (always, ALWAYS, read those leaflets!)

Mom drove me to the ER and I had the worst sense of impending doom I have ever experienced. I recited the 23rd Psalm internally just to keep myself from screaming and slapping people. I literally felt like I was going to die, even though rationally, I was in good hands. When medical personnel just would not hurry fast enough I wanted to rip their heads off. I’m not that lady that yells and swears at nurses, but I could have become her. (severe anxiety is a known adverse reaction to Cefaclor) My throat was closing after I arrived. It was anaphylaxis. That’s probably the most terrified I have ever been and the anxiety was worse than the physical symptoms, but anyway, the ER team saved me.

I took my next antibiotic and it was almost gone when I started getting hives from Nabumatome, along with wheezing. (I was on 30 mg of Prednisone had just stopped Benadryl) My rheumy said I now had a drug class allergy. I was never to take ANY NSAID again, not even aspirin or ibuprofen or any product containing them.

After those hives began to heal, I noticed more appearing again. It took me a few days to figure out it was Tramadol. I had been taking Tramadol for about 6 years combined with an NSAID for my autoimmune arthritis.

Chemical Dependency Vs Addiction

I knew from running out a few times that I had become chemically dependent upon this medication. The hot and cold sweats, anxiety, uncontrolled jerking, nausea and sleepless nights were maddening, not to mention the return of pain. If I had to take this medicine for pain every day, what did it matter if I was dependent? This is an issue with which many chronic pain people continue to wrestle.

Chemical dependence and addiction are not the same. For instance, we are ALL chemically dependent upon a substance called H₂O. So much so, that the average person will die after 3 days without it. Diabetics are dependent on insulin. Millions are dependent on antidepressants so they don’t commit suicide. People without spleens are dependent on antibiotics. There are hundreds of examples of people who do not bear the stigma of “addict” simply because their chemical substance is not a pain reliever. So what’s the difference?

Addiction usually involves craving more and more of something, inability to stop, negative social and financial consequences of using. These can happen without chemical dependence (i.e. gambling, sex addiction). Chemical or physiological dependency involves your body’s need for a substance, with negative physical and sometimes psychological symptoms as a result of withdrawing from that substance. There need not be cravings, abuse or any of the stuff addiction entails.

Getting Help

So I was dependent upon Tramadol, which was advertised to doctors a drug with low dependence and addiction risk. It turns out Tramadol is habit forming and has difficult, long lasting withdrawal symptoms. Having been on it for 6 years, a pharmacy friend had told me there was a risk of seizures. I knew I needed some help, so I called my rheumy, but got no support. My rheumy told me through his nurse I would be fine because they had taken many other people off of Tramadol without any issues. To me, the hives and the withdrawal symptoms were equally annoying. Both also could be equally dangerous. What was I to do?

I was sure I couldn’t handle this on my own. Having been sick(er) for over a month, I was SO TIRED. I cried a little, terrified at what it would mean to be in detox. What would my family and friends say? I didn’t want to be another person in chronic pain they could point to and think I was just a drug seeker. I decided to keep most of them out of the loop until it was over. I pulled up my big girl panties and took the phone a friend option. I called someone I knew that had experience with such things. She had me call a treatment center. (I sobbed between phone calls). They said I should call an advocate because unless I needed the full 90-day treatment program, they couldn’t help me. So I called the advocate, who said no one would take Medicaid, which was my only healthcare option. (more sobbing, this time on the phone). The advocate said I should call one more person who was leaving work in an hour. I called repeatedly, leaving messages. He finally called me back and gave me the name of 3 different places to try. I took a look at all 3 on the web and checked that they would take my “insurance”. Check. Looked at what others were saying: all had good reviews.

Then I called the one that seemed to have the highest amount of good press. They said I NEEDED help and that I could come in any time of the day or night and they would see what they could do for me.

It was 3 hours away. My mother lived only half that distance from them and I needed moral support. My son would stay with his father, and my grown mildly autistic daughter would stay with my parents. My son’s father would take care of our pets and get the mail. It was a big step. I won’t say this was easy. None of this was easy. It was the beginning of summer, so we were all off. Putting your life on hold, even for a week, even when you have HAAD to many times before in our chronic journey is never easy. Doing it by choice, even if it’s not really much of a choice is terrifying. When your life and body are out of control, you grasp at anything you can reach to try and control some aspect of it. I know. I know.

I had a 2-hour drive to my mother’s house. I had been off of Tramadol for 12 hours and was already twitchy, sweaty and nauseated. I decided to take more Tramadol and risk more hives rather than a seizure while driving (plus I hate puking with a passion). When we arrived at Mom’s, she was ready to drive for the last leg of our journey.

Arrival

The lobby was bright and calming, full of light and had a large fish tank, which helped me feel better. I summarized my reason for coming on a small slip of paper at the desk and the receptionist smiled kindly. Then I sat waiting with my backpack. I had stuffed 3 changes of clothes, all my meds, supplements, phone, netbook, chargers, pain relief rubs, patches, my plush, extra-large heating pad, my water bottle and miscellaneous items into it.

I saw a series of 4 different people, intake workers, and nurses who asked me more and more in depth questions. I had to give a medical history, mental health and abuse histories, plus reiterate why I was there. They had a bed for me, but because of all my health issues, had to admit me through the emergency department.

I took another Tramadol at the usual time, because my pain was exacerbated by stress. I regretted it as soon as it began to kick in at the ER. Hives intensified, and my face began to swell around my left eye with crushing cheekbone pain. The docs gave me some Benadryl and an ice pack, and increased my prednisone to 60 mg. I took a short ambulance ride back to the behavioral health building. My mother wasn’t with me for the next part.

I had to sign myself into treatment, which meant I could leave any time. The detox program is 3 to 5 days. I would not be able to legally own a firearm for the next 5 years. I don’t have one now and probably couldn’t pull a trigger with my arthritic hands anyway. I had to give them my backpack to be inspected for contraband. That would include all drugs, electronics, sharp items, weapons and strings. One of my shirts was rejected because it had a string. I also had to surrender my shoes or have the laces confiscated. I chose to wear socks. The contraband rules were there because of people in the same building and possibly on the unit who would harm themselves or others with those items, and because they want us to detox from electronics for a time as well. If I smoked or vaped, that was also contraband at this particular center, though not at every center. I had to submit to a body check. Nude. In front of two people. It was not fun, but it was over quickly. They have to be sure you aren’t sneaking anything in, for one thing. For another, they have to document all tattoos, bruises, cuts, scars and rashes. Of course I had hives from head to toe and about 50% of my body was already covered with psoriasis, so there were lots of questions.

Treatment

During treatment I Reacted to both of the detox drugs (Subutex and Soboxone they gave me, so I ended up with Benadryl injections and steroid cream for my hives. So I detoxed with minimal help. I had to stay a few days longer because of my allergies. Everybody was given a blood pressure lowering patch. We could get Tylenol, Ibuprofen, our regular prescribed meds, anti-nausea meds, or hot and cold packs if we asked for them. Vital signs are checked every 4 hours. There is a headcount every 15 minutes and daily room checks.

Time sort of stands still in there. They keep you busy. I can’t tell you much about the inside because of privacy laws. I can say that while there, we had group discussions on addiction and recovery a lot of the time. We also had art therapy and other things that were fun. The fed us well and the food was OK. The people were amiable, each with different issues than mine, but all there for chemical detox. We actually laughed and cried together, watched old movies and played games. It was like an extended family, with all ages and walks of life represented. It was a challenging and life-giving time and one of the best weeks of my life.

They treated my pain with gabapentin, and it made me feel dizzy/drunk for about 2 weeks. I couldn’t drive, so ended up staying with Mon and Dad after I was discharged. It gave me really intense stupidity brain fog for about 2 months. I was used to a sharp mind, and that was probably the hardest part. No way could I have handled that during the school year. Eventually the gabapentin really worked for me. I had to wait it out, and I am on 3200 mg daily which is a lot, but it works for my every day pain. I still have to add Tylenol arthritis on top of that a few times a week and it helps some as well. I’m at a pain level of 3 most days now, going up to 5 tops.

So it didn’t turn out too bad. I was right to take initiative and get myself healthier, and lucky to have had the ability to do so. I had some support, although most people I know didn’t have a clue about it at the time. In the end, my stay was funded by the hospital itself, because they did not actually take the kind of Medicaid that I have. If you ever think you might need this kind of help, don’t be afraid. Be proactive. It can be a great experience if you approach it with an open mind and heart.

Nancy Thornton, is a former homeschooling mom of 3, living with Psoriatic Arthritis Mutilans for the past 8 years. She decided to follow my dream of getting a science degree after her diagnosis. She has an AS in Biology and minor in Environmental Studies. Her goal is to be an Agricultural Extension Agent and community educator and she is embracing the journey. What gives her joy and courage: her family, nature, faith, music, fellow Spoonies and her cat George Purrington Silverstripes.

July 26, 2016July 26, 2016

What Our Spoonie Friends Mean to Us

We often make Spoonie friends in unusual places. We meet our special Spoonie friends in doctor’s waiting rooms, in line at the pharmacy, and in face-to-face or online support groups. Spoonies for Life asked our subscribers, “What do your Spoonie friends mean to you?”

Our Spoonie friends are very important in our lives. When we are going through tough times, our “normies” friends do not always understand our frustrations. One subscriber said, “…just when you think someone close understands, they say something to make you realize they don’t. Not really. So having Spoonie friends to write to, people who understand, is so important. If I need to vent…they are there.”

Such understanding is important for our mental health. Being a Spoonie can be a lonely situation. Having friends, even/especially the ones we have online can give us the support we need. “They mean the world to me. While I’ve only met one in person, they have been there for me through the good times and bad, offering comfort and advice for both Spoonie-related stuff and personal stuff. It’s nice to know I can go to my Facebook group after a rough day and talk about whatever is going on without judgement…it helps distract me from my own issues and helps me learn from others how to handle life’s crazy situations.”

Online support groups give us a place to be completely open. You are able to check in on your own time- whenever you feel like you are able, when you need some support, or just to get something off your chest that “normie” friends just don’t understand. Our subscribers have said, “They remind me that I am not alone. They allow me to vent without judging me or making me feel as if all I do is whine. I can be myself in [the] group and take off the fake face I wear most of the time.” “We’re a community. They understand what I am going through in a way that no one else does.”

Spoonie friends in “real life” are important to us in different ways. They know our limitations because they have their own. They are the ones who say, “Want to just come over and sit on the couches? We can just read our books, but still have company.” “Come over to hide from your family and get kitty therapy.” Or, “We just got some green tea ice cream and we’re putting it in the freezer just for you!” These are the friends who understand if you have to cancel last minute, or leave early. They understand your suffering and heartache, as well as how small triumphs are worth celebrating with you.

Spoonie friends come in all shapes and sizes, from many different backgrounds, and with many different conditions. They can share their own Spoonie stories and give us insights to new treatments, and walk you through difficult times. They keep us sane. “My Spoonie friends mean never being alone. Having someone who can totally understand all of your pain. I love my Spoonie friends so much!” “They help me put things in perspective and realize that being a Spoonie isn’t the worst thing ever, as there are so many amazing Spoonies out there living their lives to the fullest. It’s not all doom and gloom!”