My 7 Steps For Coping With a Chronic Condition

My 7 Steps For Coping With a Chronic Condition

Being diagnosed with a terminal or chronic illness can be disorienting and disappointing. But as you accept it with time, you will learn to cope with your illness by making changes in your lifestyle. Stress affects everybody, and suffering from long term health conditions may make you vulnerable to the struggles stress can bring. You may appear to be absolutely fine on the outside, but inside, you might be torn apart by the stresses of being constantly dependent on someone for doctor appointments or having to clean up, go outside, run errands, etc. To persevere the spirit to live must be there. No matter what you are suffering from, being aware of the conditions and taking precautions can ease the everyday struggle. The more positively you can handle the struggle, the easier it will be to take care of the challenges.

My 7 ways to cope with a chronic condition:

Acceptance:

Often a lot of turmoil lies in mind. Accepting being terminally ill or having to suffer from a lifelong condition such as diabetes or thyroid issues takes time for acceptance. Once you’ve accepted it, it puts your mind at ease and allows you to look for ways to combat the disease while living your life. Take your time but accept your current situation as that is only when the mind will start to look for a solution.

Look for support:

We all need people that support us when we go through a tough time, and when experiencing illness, having a strong support system is half of the journey. Having your friends and family with you during these times can boost up your confidence. Do not worry about the toxic relationships in your life and only focus on people who add positivity to your life. Value the people who love and care about you and make them a part of your inner circle. Social media is also a great place to get support from those experiencing similar conditions to you.

Look for support when coping with a chronic condition

Gain more information about your condition:

When you are suffering from a chronic condition, it is always safer to have a thorough understanding of the disease and its conditions. If you have doubts and questions, don’t hesitate to ask your doctor. You may also research online or look for support groups to gain more knowledge about the condition. Keep track of the symptoms your body exhibits and get to know your body better. Analyze methods that may help to manage symptoms related to your condition and share details with your healthcare provider.

Manage symptoms of depression:

People suffering from chronic illness go through a wide range of emotions. You may feel weary, drained out, and be in a dark place due to the condition and the symptoms you experience. A lot of people miss out on their regular doctor’s appointments and skip medications, which ends up in further aggravating the condition. It is important to be well informed about the symptoms of depression and how to tackle them. Speak to a therapist if necessary.

Take your medications on schedule:

It is often hard to remember to take medication, it’s even harder to remember if you have to take 10 of them. Set a reminder or an alarm on your phone to remind you to take your medicines on time. Remember the names of the medicines you are taking and get a deeper insight into the drugs you are recommended. Speak to your doctor to learn more about each drug and its side effects, why you’re taking them, if you may discontinue them in the future, etc.

Take your medications on schedule if you are coping with a chronic condition

Live in the present:

Suffering from a lifelong disease can make you worry and fear the future, but the best way to live one’s life is to focus on the present. Always follow the rule of ‘Be Here And Now.’ Focus on what you’re doing; if you are eating, be conscious of what you’re eating, what color food you are eating, etc. It keeps the mind focused on the present activity and prevents it from wandering off in unprecedented directions. 

Find something you love to do:

Practicing a hobby is therapy in itself. Whether it’s painting, gardening, or reading a book, find out what you like and do it. Hobbies can bring joy, a feeling of productivity, and a distraction from the suffering of real life.

Coping with a chronic illness can be difficult, but there are methods that can make this easier. Live in the moment and take baby steps every day. Changes don’t happen overnight, but as long as you make progress, you’re doing great.

About the Author:

Henna is a wellness lifestyle writer. She loves sharing her thoughts and personal experiences related to natural remedies, Ayurvedic, yoga and fitness through her writing. She currently writes for How To Cure. She can connect with others experiencing health concerns and help them through their recovery journeys through natural remedies.

Service Dogs (The Pros & Cons)

There are definite pros and cons to having a service dog.  First, I will point out a few differences between service dogs, emotional support animals, and therapy dogs.  Service dogs (SD) are a dog or miniature horse trained for specific tasks to help mitigate a disability that the person cannot do on their own. An emotional support animal (ESA) is a pet that provides emotional support that doesn’t need specialized training.  A therapy dog helps others by providing comfort, these ones you see go to nursing homes, hospitals, schools, etc…  Service dogs can go everywhere the general public is allowed to go, with a few exceptions (operating rooms, religious places that don’t allow animals, food preparation areas).  ESAs are only allowed in housing/apartments or on an airplane or a travel bus, with a letter from a doctor, counselor, or psychiatrist.  These are important differences because this will come up later in this blog and other ones that I write in the future. I will start with the pros of having a service dog, for me personally, then cover the cons obviously.

The Benefits Of Having A Service Dogs

I will be keeping this part mostly serious, with possibly a few sarcastic remarks that I will point out as sarcasm.  A benefit of a service dog/mini horse is that it will help provide a little bit more independence in your life, that is if you have a debilitating disability and the dog helps mitigate that disability (as per the ADA law and not your doctor).  The dog/mini horse is trained, either by the owner themselves, a dog trainer that is knowledgeable on service dogs, or a facility. 

A benefit of a service dog/mini horse is that it will help provide a little bit more independence in your life, that is if you have a debilitating disability and the dog helps mitigate that disability

They are trained to perform specific tasks to help their handler with things the handler cannot do.  A very common service dog/mini horse task is guiding the blind.  This is where the dog/mini horse will help the handler avoid obstacles and lead them up to a counter, etc… the animal does not know directions like google maps does, let me restate that, the dog/mini horse cannot just take their handler to Starbucks on a single command like “go to Starbucks”. The handler has to know the way, through memorization or google maps, to get there and the animal just keeps them from harm or gets them to crosswalks and helps them cross them safely.  This is a common misconception that I have heard plenty of times.  

Another main misconception that I hear is that there are only a couple types of service dogs/mini horses like guiding the blind and helping people in wheelchairs with retrieving items and opening doors.  There is in fact a wide range of different tasks that the service dog/mini horse can do.  There is mobility, balance, retrieval of items, PTSD (multitude of tasks that are performed for this one), guiding the blind, hearing alert for the deaf, performing everyday tasks (ie. Laundry, opening doors, getting items from the fridge, etc.), seizures, diabetes alert, heart alert, blood pressure, psychiatric, autism, allergy detection, medical alerting, etc. The list can go on because the tasks/jobs depend on the handler and their needs.

Pros of Service Dogs

They help the person be able to be independent with everyday tasks and help the handler to get out of the house for simple errands.  For this part, I’m going to list the pros for me with my service dog since this can be a specific thing.  I get to go out of the house with the help of my service dog because she helps me walk, no I’m not blind….  My first service dog was trained for mobility, balance, retrieval of items, alerting for vertigo, allergy detection, and protection (I’ll explain this in a moment).  My current service dog, 2.0 (sarcasm), is trained for mobility, balance, bracing, retrieval of items, alerting for vertigo and medical alerts, allergy detection, overheating, anxiety/panic attacks, and PTSD (this is where the “protection” came in with my first dog, but did not have the diagnosis until a few years later). 

y current service dog, 2.0 (sarcasm), is trained for mobility, balance, bracing, retrieval of items, alerting for vertigo and medical alerts, allergy detection, overheating, anxiety/panic attacks, and PTSD

This benefits me because I feel comfortable going out into public because I know I am safe and my dog will help me be completely independent.  I got to feel normal for a bit there and did not have to wonder if I had energy to get my wheelchair out of my car or not (I no longer use a wheelchair at this point in time).  I know other pros are that I am able to avoid allergens without feeling the need to avoid going out in public places with the fear of coming across it. I have had a significant drop in anxiety/panic attacks and debilitating vertigo attacks.  My SD helps with avoiding triggers for my PTSD and vertigo.  For me, the pros outweighed the cons with a service dog.

Cons of Service Dogs

This one is a bit easier to write for me only because I found out about the cons after I had gotten my SD and experienced them out firsthand.  I honestly think that if I had known the cons before I got my SD, I would have chosen to stay in the wheelchair and not relearned to walk.  The main one is that you will feel like a freak show/circus act and many people will treat you as such. 

The first thing that comes to mind with this is that people will take pictures of you and your SD without asking and even post it on social media.  The captions to this can be “look at the pretty puppy! I’m going to sneak a pet when they aren’t looking!” or “this is a fake one because the person isn’t blind!”.  You will get unsolicited advice on what breed you should be using, whether you truly need one or not, what you can use instead of the SD, or they will try to educate you on the laws….incorrectly…. I have had people be downright rude and mean towards me.  I have had death threats because I’m “torturing” my SD for “forcing” her to work. 

The first thing that comes to mind with this is that people will take pictures of you and your SD without asking and even post it on social media.  The captions to this can be “look at the pretty puppy! I’m going to sneak a pet when they aren’t looking!”

I have had people scream at me for lying and saying that I am disabled when I look “perfectly normal”.  People will think that they are entitled to pet your SD without asking and that they can do it because they said “hi” to the SD first.  People will assume that you are blind and try to sneak a pet when they think you can’t see and then get mad when you stop them because they were caught.  These are the people who then go straight into “so your faking being disabled! I’m going to report you!”  You will be told you are not allowed in restaurants or other establishments because they don’t’ allow pets, but if you try to educate them that the animal with you is indeed an SD they will not back down.  Some will even say that you need papers or a license for it.  In a couple of provinces in Canada, this is true, in the US it is not; as per ADA law, there is no registry or license.  

All in All

Even with all the cons, I chose to keep my Service Dog and even continue with SD 2.0, because I get my freedom (to an extent).  My SDs have saved my life a couple of times and I have been very grateful for them and all the hard work that they put into helping me.  They are both spoiled rotten and well taken care of. 

My first SD Kaiya (German shepherd, border collie, husky) is retired now and living the life!

My first SD Kaiya (German shepherd, border collie, husky) is retired now and living the life!  She gets to sleep on the couch when she wants, plays, eats and sleeps.  My SD 2.0 Naomi (gladiator dane) is enjoying working thoroughly and is excited when her pack/equipment comes out that means she is going to be working.  If she loses wanting to work before she gets too old I will retire her because as handlers, we want what is best for our Service Dsog and want them to be happy doing what they do. 

If you come across a team and want to say hi, please talk to the handler and not the SD.  If we choose to not say high back or seem like we are ignoring you, please do not be offended as some days we are out even though it could be our worst day yet with energy.  Some of us are willing to answer questions and hear about your pets (yes that happens more often than you think).

About The Author

Katie McCabe is a wife and mother of two beautiful girls. She has rheumatoid arthritis, fibromyalgia, and lupus, along with a few other disabilities. She works full time at a school district in the city where she lives and will be going back to school to get her Masters. She has a service dog that helps her with being independent and able to function day to day. Follow Katie on Instagram

Finding The Good In Life – Stacey’s Spoonie Story.

Hello, my name is Stacey Moisant and I am chronically ill. My story began about 35 years ago when I was diagnosed with Diabetes Type I. I was sent to a hospital locally and for 2 weeks. I was taught how to take insulin multiple times per day and how to eat by measuring out my food; back then it was a ½ cup of this, 4 ounces of this, a small handful of that. I have since learned how to carb count and have been on an insulin pump for almost 20 years.

Diagnosis After Diagnosis

Then around 13 years of age, I began falling and having issues with both of my knees swelling terribly and being very painful. After four surgeries I was diagnosed with a “rare” form of Rheumatoid arthritis. I call it “rare” because it doesn’t show up in any of my blood work it only shows up in the fluid surrounding my knees. After multiple physicians telling me nothing was wrong or I no longer had rheumatoid arthritis I finally found a doctor who ran a test called Vectra DS which shows how severe my condition was.  The results came back zero to 29 is low severity, 30-44 is moderate and 45 to 100 is high; mine came back as 52. My joints had already began to disfigure so my new physician started me on Humira. My hopes are that my joints stop moving and my pain decreases.

In the midst of trying to find a doctor to believe me about the rheumatoid arthritis, I started having severe abdominal swelling, I couldn’t eat without throwing up and in a great deal of pain. I was diagnosed with Gastroparesis. On top of being Diabetic, I had to learn what I could and couldn’t eat with this disorder. Pasta, pizza, potatoes, you know all the good stuff, was now off limits or at least limited … do I want to hurt, is that food worth the pain? Sometimes the answer is yes and sometimes it’s no.

I had to learn what I could and couldn’t eat with this disorder. Pasta, pizza, potatoes, you know all the good stuff, was now off limits or at least limited … do I want to hurt, is that food worth the pain? Sometimes the answer is yes and sometimes it’s no.

A few years went by with no new symptoms, no new diagnoses, just living day to day. I woke up and my husband and I decided to go to the grocery store and I had a twinge of pain in my right back but really didn’t think much about it until half way through our shopping trip I doubled over in pain. We rushed home, I just wanted to lie down for a little while and see if it would subside. By this time my pain tolerance was very high and what use to by a 10 was now about a 6, so I lay down and about ten minutes later I rushed to the bathroom thinking I had to urinate and nothing, just more pain. I got my husband and he rushed me to the hospital to find out I had papillary necrosis in my right kidney. After about 15 surgeries to fix this, I am happy to report I have no further issues with my kidneys. They are hanging in there for the long haul.

At this time, I am now around 37 years old and I believe that my gastroparesis is acting up and I go to see my doctor after being in the ER due to vomiting and nausea etc. He took a CT scan and decides he needs to do a procedure to go in and look at my stomach and pancreas, the procedure is called an ERCP (endoscopic retrograde cholangiopancreatography). After my first ERCP I was diagnosed with a Sphincter of Oddi dysfunction and had to have a stent placed to keep that area from swelling shut. Then, I had to have another and another and another. One of the side effects of this procedure is pancreatitis and after the second procedure I again doubled over with pain and was rushed to the ER to find out I indeed had pancreatitis. Now you talk about pain but until you have experienced pancreatitis you have no idea what pain is. I thought I was dying. Due to the pancreatitis I have had multiple ERCP’s, 3 GJ tube placements, multiple hospitalizations and countless doctor visits. My GI doctor and I feel like family. He is an amazing man who has kept me alive for 11 years now.

Keep Living, Keep Moving & Finding Joy

I worked in the medical field for years; working at our local children’s hospital helping children to realize that yes they are sick and uniquely different, nevertheless you keep moving, keep living, keep finding joy in life and “if there is a will there is a way”. I have since been deemed disabled but I still make it one of my missions that with all of the above diagnoses and along with multiple others like hidradenitis, cellulitis, Morton’s neuroma, dyshidrotic eczema, GERD, fibromyalgia, high cholesterol, thyroid disorder, obstructive and central sleep apnea, obsessive compulsive disorder, depression and anxiety to name a few I can still get out of bed and live a productive life taking care of myself and my family.

truly believes that because I am chronically ill doesn’t mean I can’t find good things in life

I am now 46 year old and truly believes that because I am chronically ill doesn’t mean I can’t find good things in life. I keep myself busy with crafts and pen addictions and taking care of my ailing parents. I try to do everything with a smile on my face and love in my heart. I have one child in which we adopted at the age of 3 now going on 20 years old. She is my greatest achievement in life. I never thought I would have children or be able to raise I child due to all of the pain that I go through on a daily basis but with God’s help and direction I keep moving forward.

Check out Stacey’s instagram to follow her chronic illness journey.

Comments That Are Hurtful to Recieve When You Live with Chronic Illness

I have lived with Chronic Pain and Chronic Fatigue for over 30 years now…I recently turned 57. My illnesses include Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a spinal condition called D.I.S.H., Gastroparesis, Atypical Trigeminal Neuralgia, Diabetes Type 2 and Bipolar Disorder. Most of my illnesses are invisible. To look at me, you would probably think I’m a healthy woman, but in reality, I’m suffering every day, all day. I use a cane for mobility and often a walker, and when the distance is too far, I use a wheelchair. Despite that, I have been on the receiving end of some hurtful comments and I’d like to address them here.

1. “You don’t look THAT disabled – are you sure you need that cane/walker/wheelchair?”

Yes, I’ve actually been asked that. Now, it’s important that you understand I’m a great advocate for myself, and I don’t put up with nonsense like that. My reply was “exactly HOW disabled do I need to be to use these mobility aids?”. They, of course, had no answer for that. Please don’t make comments about our abilities or lack of them. I do what I need to do to keep my body moving. I’m the best judge of my condition and what I’ll benefit from, not you. Unless you’re walking in my shoes, please don’t judge me.

2. “Oh, I’m tired too, I know exactly how you feel.”

Ah, Chronic Fatigue…how I hate you so. And unless you’ve been diagnosed with it, you have no idea what ‘tired’ really is. Chronic Fatigue leaves you so debilitated that you could sleep for 16 hours and still wake up exhausted. You have to rest after having a shower or bath because you’re shaking so badly from the exertion. Chronic Fatigue is like swimming in concrete, every movement takes enormous amounts of energy and the simplest tasks like brushing your hair or washing your hands take effort and concentration.

Being told "I'm tired too" when you experience chronic fatigue.

Don’t forget about things like working or raising kids when you have Chronic Fatigue…you feel like a lousy employee or an unfit parent when you suffer like this. Every task is a Herculean feat and there’s no way to win. Oh, and it’s every day and night too!

3. “Have you tried (fill in the blank)?”

I appreciate that people want to help, I really do. The thing is, I’m desperate to feel better, so I’ve tried everything that’s out there. Every drug, every therapy, every alternative option including CBD products, Essential Oils, Nutraceuticals… you name it, I’ve tried it.  

When you make these suggestions to me, you make me feel like I’m not doing enough; and it diminishes the hard work that I HAVE been doing to get well. Again, I know people are trying to help, but just stop it. You’re not helping at all. If you really want to make a difference, ask your loved one or friend with a chronic Illness if there is any research you can do for them in regards to new treatments. That way, you’re not taking control of the person’s health, but you’re still offering to be helpful. And if we say ‘no thank you’, take that at face value and don’t surprise us later with a list of “things” that might help.

4. “Well, you don’t look that sick.”

This goes hand in hand with number one. First of all, how sick do I have to look to satisfy you? Do I need to have dark circles under my eyes, and have greasy hair? Wear sloppy clothes because I’m too ill to care for myself? I may be chronically ill, but I still take pride in my appearance, especially if I’m going to be in public. Sure, it takes effort, but to me, it’s worth it. Some makeup, a nice outfit…it doesn’t take much, but I want to look as good as I can because my illnesses already robs me of so much in my life. Why should I let them take away from my personal appearance as well? And no offense, but I’m not living my life to meet your standards anyway…I’m living life to meet MY standards, which haven’t changed from before I became ill.

Not looking sick when I apply makeup, as someone with chronic illness.

5. “When are you going to get better? You’re always in poor health.”

Hmmm, let’s define the word “chronic” for you. It means ongoing, persistent, without end. As in, my Chronic Illness is never going to go away. I may have periods of remission where my body is cooperating and things are better than they have been, but that doesn’t mean the illness has gone away…it just means it’s in remission. At any point, things can change and I could find myself bed-bound. Again.

When you ask a person a question like this, it only serves to depress us. We’d love to get better and live a normal life again, but this is a life sentence that we’ve been handed; and there’s no parole. Please don’t say this to someone living with Chronic Illness…tell us instead that you hope things will improve for us or that you’re not giving up hope for better days ahead. That’s what we hope for too.

Maintain hope for those you know with chronic illness.

I know that people often don’t mean to be rude or ignorant, but sometimes the questions seem to be asked without people thinking first. Please remember that we have been living our lives like this for probably a long time, and we’ve heard it all before. Think before you speak and put yourself in our shoes before you ask a question. Would you want to answer it? If the answer is no, then don’t ask. Just tell us you’re thinking of us and sending good thoughts. We appreciate that the most.   

Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com  She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC.  She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie. 

There Is Always Hope – Pamela’s Spoonie Story

My pain story goes back many years. I remember suffering widespread body pain from my teen years and on – I’m 56 now. Mostly it was mild for many years, but enough that I knew it wasn’t normal. I ached all the time, but back then, I was living a pretty transient lifestyle and it just wasn’t at the forefront of my mind. I finally settled down, had kids, entered and left a couple of relationships, and then met my wonderful husband. 

Over the years I’ve had my share of surgeries, including appendix, uterus, then stomach surgery in 2004 for severe gastric reflux disease. In 2007, my body went into overtime with health problems, and I ended up having surgery to remove my left ovary, then my gallbladder and then my right ovary – all happening within a 6-month time frame. Talk about body trauma! 

Over the years I've had my share of surgeries, including appendix, uterus, then stomach surgery

My surgeon also discovered that I had scar tissue covering my bladder and bowels each time he operated and that I’d probably had endometriosis for years without knowing it. It certainly explains a lot of why I had so much pelvic pain over the years. 

The List Of Chronic Illnesses Goes On and On

So now, in addition to my Fibromyalgia and Myofascial pain, I live with:

  • Chronic Pain / Chronic Fatigue Syndrome
  • Osteoarthritis (in all my major joints)
  • Forestier’s Disease (aka D.I.S.H., a spinal condition affecting my thoracic spine)
  • Type 2 Diabetes (on insulin)
  • Trigeminal Neuralgia
  • Bipolar Disorder
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
  • Bone spurs on fingers on right hand, plus inflamed tendons in right palm
  • High Cholesterol
  • Raynaud’s Disease
  • Hypothyroidism
  • Brachydactyly Type E (a genetic bone condition I was born with)

 Pam In Pain

I’ve been lucky in that I’ve had good family doctors in both cities I’ve lived in (Calgary, AB and now Langford, BC). I was referred to and accepted into outpatient treatment at the Chronic Pain Centre while living in Calgary, and there, I worked with a team including doctors, physiotherapists, a psychologist, and others. We tried several types of injections for the Myofascial trigger points, including Botox, but nothing helped. My Fibromyalgia wasn’t really treated other than putting me on Lyrica first and then Cymbalta, and that’s all the treatment I’ve had for it. 

I have been on Disability since 2009 as I can’t sit, stand, lift or carry for more than a few minutes at a time…I’m constantly having to move or shift position to prevent my muscles from stiffening or going into spasm. The doctor who diagnosed my Fibro and Myofascial pain said it’s among the worst he’s ever seen. I’m never pain-free, I’m constantly exhausted because I can’t get into the deep restorative sleep….I’m loopy and dizzy from drugs and as much as I keep a positive attitude, I’m frustrated beyond belief that this is what my life has become. 

My body is hypersensitive to many things including the feeling of labels in clothing, loud noise, smells….you name it. I’ve also developed persistent excessive sweating – I can be in a freezing cold area and have goosebumps all over, but I’ll be sweating from my head, arms and chest. So embarrassing and uncomfortable!!

My body is hypersensitive to many things including the feeling of labels in clothing, loud noise, smells….you name it.

For a period of time, I attended group classes at the Victoria Pain Clinic for relaxation, diet, exercise, etc. and it did help to learn other ways to focus and cope. It also helped to be with people who “get it”. My husband is a saint, and treats me like a princess, but as wonderful as he is, he can’t feel what I feel. Sometimes, the best thing I can do is soak in a hot bathtub and try to focus on other things, but nothing ever makes the pain go away. I pray a lot – my faith in Christ is huge, and I allow myself to be taken care of so I can focus on healing. That was a hard step for me, but a necessary one. I’ve always been the doer, but now…I need to step back and take care of me.

In 2017, I had my right hip replaced because my osteoarthritis was so bad, and there was an impingement as well, which meant the head of the femur wasn’t sitting in the hip socket properly. The surgery took a couple of hours to do, and I was in the hospital for just 2 days before I went home. The nurses had me up and on my feet, the day after surgery and there was actually little pain. My recovery took approximately 6 months and while I’m still using a cane, it’s because I have knee problems on the same side, not because of the hip. My hip feels great and I’m so pleased with the surgery. My left hip will need to be replaced as well, but hopefully not for another year or so.

The Future Is Full Of Hope

This year, I will be facing brain surgery as a result of my Trigeminal Neuralgia. I’ve run out of treatment options as the drugs I take no longer are effective. I’ve even tried Botox for my TN, but without good results, so I’m looking at a surgery called Micro Vascular Decompression to relieve pressure on the Trigeminal Nerve and hopefully it will leave me pain free!

The Future Is Full Of Hope

So what have I learned through all of this?

  1. I am stronger than I thought I was, and I’m able to tolerate a lot more than I thought I could
  2. You need a team, or at least one good partner to help you when you live with health issues. For me, it’s my husband Ray. I couldn’t do this alone, but he makes everything better. He believes in me, he helps me physically with things I can’t do, and he never makes me feel like I’m “less than” for not being able to do things because of my physical pain or my fatigue. 
  3. Pacing – you need to be able to pace yourself throughout the day in order to live your best life with chronic pain and fatigue. That means letting some things slide in order to accomplish a few other things. For example, Monday may be a day for sweeping and that’s it – dishes have to wait. Or, you do the dishes, but vacuuming gets put off until tomorrow. You need to learn how much energy you have and the best way to use it. If you haven’t read the Spoon Theory, it’s a good example to explain all about energy and how much it takes for us to do everyday ordinary things. 
  4. You are enough, just the way you are. Period. 
  5. Accept that this is reality but never give up hope for things to improve. 

I struggle with a lot of health issues, but my motto is “there is always hope”. It’s the name of my blog as well, where I write about Chronic Pain and Invisible Illness. I keep a positive outlook on life and I know that despite the fact there’s a lot of negative things going on for me health-wise, it could be a whole lot worse as well. I feel blessed overall and I never take things for granted. 

About The Author

Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com  She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC.  She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie. 

Real Life Math Problems: Eating with Type 2 Diabetes

photo shows a table set for a meal for four people

(Note: this is not intended as medical advice nor should it be used as such. It is simply the author’s recounting of her experience with diabetes.)

I always roll my eyes a little bit when I see that meme cycle through Facebook about never using algebra in real life. As a Type 2 diabetic, my life sometimes seems like nothing but algebra–especially at mealtimes.

I am tired of being sick. In order of diagnosis date I have major depression, type 2 diabetes, generalized anxiety disorder, and degenerative disc disease. I also have Factor V Leiden clotting factor disorder which has put me on multiple blood thinners following four strokes. (Clotting, it seems, is my super power. This might be useful if I was continually under attack by evil mega leeches from outer space, but in our dreadfully normal timeline it just makes my brain self-destruct.)

I can handle all of these, but the diabetes is a royal pain. It affects almost everything my body does. Plus I have to stab myself with needles up to ten times a day. (When I was writing this I was using voice-to-text which transcribed that line as “I have to starve myself with noodles up to ten times a day” and, to be honest, I really want THAT version of diabetes.)

Diabetes

I’m going to assume that, if you’re reading this, you probably fit into one of two camps: you (or a loved one) have diabetes so you know exactly where I’m coming from, or you know very little about diabetes. Since my experience has been that, other than endocrinologists, the majority of doctors and nurses in the US fall into this latter camp I feel reasonably comfortable assuming that this also applies to the general population.

On paper, diabetes may not sound all that complicated. Check your blood sugar in the morning and again before every meal. Take your insulin in the morning, with meals, and at night. Take any other diabetes meds. Don’t eat sugar. Lather, rinse, repeat.

The reality however is quite different. For right now, I’m going to focus on the joy that is mealtime insulin dosing.

Figuring out insulin with meals

photo shows the quadratic formulaBack when I could still work, my coworkers could never understand why it took me several minutes to figure out what my insulin dosage should be and why I would sometimes end up hypoglycemic. The best explanation that I could come up with (since I worked with math and statistics people) was to tell them that calculating a meal time insulin dose when you have type two diabetes is like solving the quadratic formula when, instead of having values for A, B, and C you have ranges (say -25 to 25) for the first two and are complete missing the value for the third, but you still have to solve the equation within five points of the correct answer on the first try.

There are a few ways of doing your mealtime insulin dose. If you’re someone who eats a fairly consistent meal day after day, at least as far as the number of carbs is concerned, you and your doctor can figure out your insulin dose once and then you just repeat it, ad infinitum, assuming that you continue to eat that same number of carbs per meal.

Maintaining a consistent number of carbs for every meal is not something that works for me. Instead, I have to calculate each meal individually. My doctor and I determined how many carbs each unit of insulin will cover given my body’s functioning. For me, one unit per twelve carbs usually works. I then calculate the number of carbs in my meal and do the math.

Neither of these sound too difficult, right? Well, hang on Sloopy—we’re not done yet.

High Fructose Corn Syrup

As time goes on, and you learn more about how your particular body processes carbohydrates, you may learn that you have your own little quirks that may or may not be shared by other people. For instance, say a bottle of soda has 60g of carbs. For my ratio of one unit of insulin for every 12g of carbs, that should mean that five units of insulin are needed to cover a can of soda. However, soda or any other food that has high fructose corn syrup (HFCS) is processed (at least by my body) differently than regular sugar. Through trial and error I’ve learned that for foods containing HFCS I need to increase my insulin by 50% meaning, in this case, a bottle of soda takes seven units of insulin.   I use soda as an example because it’s obvious, but HFCS is in a plethora of food products, including salad dressings, condiments, cereals, granola bars, canned and frozen dinners, and breads. HFCS can make calculating the number of carbs in any item on a restaurant menu super fun, since you never know exactly what the restaurant has made on its own and what components are purchased.

This Is Real Life, Not a Fad Diet

And while we’re on the subject of sugar, let’s be realistic. Well meaning people seem to think that diabetics can never have sugar again-no desserts, etc., ever again. I once had a friend lecture me that “she couldn’t watch me killing myself” because I drank a glass of orange juice with breakfast. Listen, diabetes isn’t a fad diet. It’s not something that I’m doing for a couple of weeks and then I can go back to my real life. This is my real life. And in the rest of my entire real life, I’m going to have a slice of birthday cake from time to time. Maybe even a glass of orange juice. And if I do it in moderation, and adjust my meds and insulin as needed, that’s just fine. (And, yes, my doctor agrees.) 

Correction Dosing

The next part of mealtime insulin dosing is correction dosing. This means that, again with your doctor’s help, you will calculate a correction scale of the number of units of insulin per the number of points that your preprandial (pre-meal) blood sugar exceeds a set number. For example, if I check my blood sugar before lunch and it’s 143 mg/dL, I would add four units of insulin to whatever dose I’m giving myself at lunch. (I have my doctor’s approval to do a tight correction scale based one unit per ten points and an ideal glucose level of 100 mg/dL. Often that ideal level may be set closer to 130 mg/dL to reduce the risk of hypoglycemia. Your mileage may vary.)

Other Factors That Affect Your Blood Sugar

Got all that? Good – that was the easy part. Going back to my quadratic formula example, remember how I said I got ranges for two out of the three values and the third was missing? That third value is made up of a variety of factors, including but not limited to:

  • Sleep
  • Physical activity
  • Illness
  • Stress
  • Alcohol consumption
  • Other medications
  • Menstrual cycles

There’s really no way to account for these in determining meal time dosing, but they all potentially affect how well my body processes that insulin.

Also, since I’m a type two diabetic, my pancreas does still work, if only a little bit. This means that I do have some natural level of insulin, but since I have absolutely no way to determine how much, it gets tossed in here under the blind values.

Okay, I hope you all brought your number two pencils because it’s time for a quiz now. Lowest scorer buys dinner.

About the Author

photo of the authorJen is a writer and painter living in Indianapolis, IN. Until her stroke in January of 2017, she wrote grants and contracts for a government agency. She is currently working on a novel which combines her experience in stroke recovery with her history as a paranormal investigator/ghost hunter.

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

A bad reaction to a diabetes drug can be severe chest pain.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!

DiabetesI 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 writes about a reaction to a medication for type 2 diabetes.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.