PSC, a rare autoimmune disease

After what was almost a half a year of tests, I found out I had Primary Sclerosing Cholangitis (PSC). What triggered such tests? Abnormal liver blood tests. I was told they were really high and that I couldn’t be on any meds for my Ankylosing Spondylitis while the cause of this was investigated. I was referred to a Gastroenterologist and he set up a plan with diagnostic tests that I needed to have done in order to figure out why my liver enzymes were so high. I had an ultrasound done. This was a standard test but my gastroenterologist needed more information so he scheduled a liver MRI. This test was a little unpleasant because I had to sign my life away in paperwork and the dye going into my body was an uncomfortable feeling. He wanted even more confirmation so I had a liver biopsy done. All of these tests while being a new mom were overwhelming because I was also off my AS meds. In the end, I was diagnosed with Primary Sclerosing Cholangitis and I had no idea what it was.

What is Primary Sclerosing Cholangitis?

PSC is a rare autoimmune disease that affects the liver bile ducts (small tubes through which bile flows from the liver to the gallbladder and intestines).

As you can see in the image above, the bile ducts gradually decrease in size due to inflammation and scarring. As a result, bile that is normally carried out of the liver accumulates within the liver, which then damages liver cells.

I get yearly ultrasounds to check for disease progression. So far my liver looks good and my disease is pretty stable. I also had a bone density scan done which showed osteopenia. If you have an autoimmune disease, ask your specialist about a bone density scan. My gastroenterologist was surprised I hadn’t had one done given that I have Ankylosing Spondylitis.

PSC is more common in males than females just like AS is noted to be and it’s diagnosed around the same age as well, between the ages of 30-50. I was diagnosed at 32.

In many cases, PSC occurs in association with inflammatory bowel disease but the exact cause of PSC is still unknown. Having both PSC and AS is called having a comorbidity. Comorbidity means more than one disease or condition is present and they are often chronic or long-term conditions.

According to the Canadian Liver Foundation, the symptoms of PSC are:

• itching

• fatigue

• jaundice (yellowing of the skin and eyes)

• episodes of fever, chills and abdominal pain which may indicate an infection within the bile duct.

Many of these symptoms may not occur until progression of the disease. I experience fatigue but it’s hard to identify if it’s from my AS or my PSC or maybe both.

In the advanced stages of PSC, cirrhosis may develop with signs of liver failure. Cirrhosis is a condition (not a disease) that results from permanent damage or scarring of the liver. This leads to a blockage of blood flow through the liver and prevents normal metabolic and regulatory processes. When the disease has progressed to liver failure, a liver transplant may be needed and this isn’t uncommon which is a very scary thought for me mainly because of the long wait lists that exist for those needing a liver transplant.

Another scary reality is that there are no treatments or cures for PSC. There’s nothing I can really do about its progression which is a very helpless feeling. Biologics have been lifesavers and extenders in the lives of those of us suffering from AS and I just wish there was something like that for PSC. There are preventative things that you can do to keep your liver healthy. I’m no dietician or physician but my liver is looking good for someone who has had the disease for 9 years so I must be doing something right. First thing I did was I stopped drinking alcohol. Now I do have a glass of wine on special occasions but that’s about it because we all know the damage that alcohol can do to your liver. Eating lean, cutting out red meat and limiting processed foods help keep my liver healthy. I’m a pescatarian so I don’t eat meat but I do eat fish. I really despise that term because it sounds like pesky which is the equivalent of annoying so I usually say “I don’t eat meat but I eat fish”. From my experience, a lot of people don’t know what a pescatarian is so it’s easier to jump right to the definition. We all know processed food is bad for us but most of us live really busy lives which is why processed food exists. So all I’m saying is to be more conscious of what you’re eating and limit the processed food as much as possible. I’ve also used milk thistle. There is no scientific data that proves that milk thistle helps the liver but there’s a lot of literature that talks about the possibilities. It’s something to look into with your doctor if you’re thinking about using it.

There’s also a lot of debate out there about the long wait times for liver transplants. Should someone like me who has a liver autoimmune disease have to wait in line behind someone who needs a liver transplant due to alcohol abuse? Alcoholism is a disease as well so it’s a complex question. I would love to hear what you think in the comments.

I can only hope that bringing awareness to Primary Sclerosing Cholangitis will bring about more research and better outcomes for those of us suffering from this rare autoimmune disease. Please share and help spread awareness about Primary Sclerosing Cholangitis.

Thank you for taking the time to read my post. I would appreciate a like and a follow 😊

“You have sepsis”: scariest words I’ve ever heard. If your immune system is compromised, it’s important to know about sepsis.

Before getting into my personal experience with sepsis, I bet some of you are wondering “What is sepsis?” According to the CDC, sepsis is the body’s extreme response to an infection. It is a life-threatening medical emergency and it happens when an infection you already have triggers a chain reaction throughout your body. Without timely treatment, sepsis can rapidly lead to tissue damage, organ failure, and death. I didn’t really know what sepsis was prior to my experience and since my compromised immune system puts me at risk, I feel like I should’ve been more aware which is why I want to share my story with you.

Here are the signs and symptoms of sepsis taken right from the CDC’s website.

High heart rate or low blood pressure
Confusion or disorientation
Extreme pain or discomfort
Fever, shivering, or feeling very cold
Shortness of breath
Clammy or sweaty skin

You can have one or more of these signs or symptoms. I had one symptom, extreme pain and discomfort, which is why I thought it could simply be my Ankylosing Spondylitis flaring. However, maybe I had other symptoms but since I was unaware of sepsis, I took them for granted.

I’ll never forget the day I heard the words “You have sepsis, we have to operate immediately”. I went to work that day and I didn’t really feel like myself. I had more pain than usual and the intensity and stiffness in my leg and hip was gradually increasing. I thought that maybe I was having a flare up of my Ankylosing Spondylitis it being Friday, last day of the work week, but it felt different because it was mainly isolated to my right leg and right hip and I normally feel pain in my spine and ribs when I have a flare. It was a very uncomfortable drive home. It’s about a 40 minute drive and I honestly couldn’t wait to get home. I started to realize something was terribly wrong.

When I got home, it was time to get ready and go to my son’s baseball tournament, but I couldn’t. I was sitting on the couch and I couldn’t lift my right leg. It was dead weight. I was terrified. I didn’t know what was happening to me. I went straight to the hospital and I was admitted. My blood work was off the charts but I had no fever which was puzzling so the doctors started running tests. They had no beds in the hospital (unfortunately this isn’t uncommon) so I waited in the hallway on a bed. I was in a lot of pain so they gave me morphine and an anti-inflammatory. I remember not being able to eat because surgery was still a possibility so all I had were ice chips to suck on and luckily hospitals have the best ice chips.

I was alone. I was in a hallway. I was potentially having emergency surgery any minute. I was scared. I waited all night while they ran one test after the other. I was on some serious pain meds so I was in and out of consciousness. I would get a test done and they would wheel me back to the hallway. The hallway was so busy and loud. I couldn’t relax at all. The first test they did was an x-ray. The x-ray showed arthritis in my right hip. This however did not explain my symptoms, but demonstrated that my Ankylosing Spondylitis was progressing. The doctor decided to do a CT scan of my right hip. The CT scan demonstrated fluid in my right hip which also isn’t completely uncommon for someone with Ankylosing Spondylitis. This still wasn’t enough to justify my symptoms. The doctor decided to do an aspiration of my hip under ultrasound. The orthopaedic surgeon was called in in the middle of the night. I finally got moved to another area where there were beds separated by curtains. It wasn’t a shared room because there were many beds. It was a large space and everyone seemed to be staying there temporarily. I figured out that it was a pre-op area. The orthopaedic surgeon came to see me and stated that the fluid was infected. I had SEPSIS! He told me that he would have to operate in 15 to 20 minutes. I was going to have emergency surgery for a septic hip. It was happening.

That’s me in the hallway and where I stayed my first night in hospital

I didn’t want my husband and son hanging out in the hallway of the hospital so they reluctantly left me alone. But when I heard that I was having surgery, I asked for a moment to speak to my husband and he came to the hospital right away. I didn’t have time to see him in person, that’s how fast it all went when I got the news. We said our “I love yous” on the phone and I was rolled into surgery. I was in tears. I remember them rolling down my face. All of these masked doctors and nurses staring down at me with sympathetic eyes. They were so good to me. They were doing their best to calm me down. I remember the anesthesiologist asking me what music I liked. I said “The Beatles”. It was the last band I remembered introducing to my son Liam and that gave me comfort. Suddenly and out of nowhere, the Beatles were playing and I could see the surgeon getting prepped. The song was “With A Little Help From My Friends” which was oddly appropriate. It was a surreal experience and suddenly I was out and then what felt like 5 minutes later I was awake. I was told everything went as expected and that the liquid that came out of my hip was definitely infected and looked like green slime. They also sent a specimen off to try and identify the bacteria so that they could prescribe the correct antibiotic.

I was wheeled into a room with 3 other people. We had curtains, of course. But they were strangers and they were all post surgery and in pain. The guy across from me was literally screaming for help. The lady next to me was whimpering in pain. It felt like the next level of Jumanji. My life got turned upside down in what felt like a blink of an eye. My husband brought me all of my comforts and ordered me TV and that was it. I could barely walk. I couldn’t sit down on a toilet. I couldn’t shower. I couldn’t do much of anything. Try to eat, sleep and take pain meds, repeat. I had a really hard time eating with all of the antibiotics and pain meds. I spent 5 days in the hospital as they pumped me with two strong antibiotics (Vancomycin and Ceftriaxone Sodium). By the end of my stay I could walk short distances with crutches. I could hand wash myself. I could go to the bathroom on a raised toilet. I was starting to see a light at the end of the tunnel.

They ordered me a raised toilet seat for home. A seat for the bathtub. Crutches. I was sent home with an IV in my arm because I was to receive 3 weeks of IV antibiotics daily from home through the LIN. A nurse would come by my house to set up my IV stand for my antibiotics. It’s like we were transferring the hospital to my home. A nurse would come daily to set up the antibiotic. I couldn’t get onto my own bed so my son slept with my husband while I set up my IV in his room and that’s where I slept. I couldn’t do anything with the IV in my arm. Life felt so hard. I couldn’t get it wet so I had to do a lot of hand washing. My husband had to help me wash my hair. I was in pain. It was a new low for me. The lowest I’ve ever been.

My raised toilet seat
My setup in my son’s room

What was worse was that the nurses struggled so much with my IV. They couldn’t find my vein and would have to call backup. One even bent the needle going into my vein which became so uncomfortable that another nurse came the next morning, removed it and showed me the bent needle. The nightmare just kept getting worse. The anxiety I felt around my IV antibiotics was extreme. It was a celebration when a nurse successfully hooked me up which was actually quite sad given how sick I was. They finally gave up and scheduled a PICC line appointment. A PICC line is a thin, soft, long catheter (tube) that is inserted into a vein in your arm, leg or neck. The tip of the catheter is positioned in a large vein that carries blood into the heart. It’s a device that is ready to receive an IV line which eliminates the need to constantly have to insert a new IV. I really wasn’t looking forward to this appointment but I had to be able to take my antibiotics.

This is how my IV stayed. The nurse would come and hook up the antibiotic to the open end.

The day before my appointment, I had developed a rash and hives all over my arms. The appointment was cancelled and the hives quickly spread all over my body. My Infectious Disease doctor decided to take me off of the IV antibiotics because I was having an allergic reaction to them. She then put me on Levofloxacin, an oral antibiotic, and my lip swelled up along with hives all over my legs. I ended up in Urgent Care. The doctor through consultation with an Infectious Disease doctor decided to take me off of the Levofloxacin and put me on another antibiotic called Doxycycline. A week into the Doxycycline, I experienced severe nausea, vomiting and chills. This was a gradual reaction that was building throughout the week. I was taken off of this antibiotic and I was only able to complete 3 weeks of antibiotics rather than the minimum 4 weeks that was in the plan. This was yet another worrisome part of my septic hip surgery. My inability to tolerate antibiotics due to allergic reactions created a serious risk for future infections and my ability to fight them. Another scary reality that I now have to live with.

Hives all over my body
Swollen lip

I still have a large visible scar on my right leg and I still can’t really look at it. I have suffered from mental health issues since my septic hip surgery. I have a lot of anxiety when I get my infusion because that’s where my doctors believe it all started. That’s why in my previous post “Going to an infusion:What to expect”, I talked about watching the nurse insert your IV. I tend to look away and I just can’t afford to anymore. The site has to be cleaned with alcohol and then the needle must be inserted after that. No fanning to dry the alcohol faster, no touching the arm to locate the vein again, no tapping the vein. It has to be alcohol then needle. Exact words of my Infectious Disease doctor and I plan to listen to that advice. I hope you do too.

I wanted to share this experience with you to bring awareness to sepsis, the signs and symptoms, and its devastating effects.

If you found this post useful, I would appreciate a like and a follow 😊.

“What do you do?” It’s not an easy question for many of us to answer

“What do you do?” is the classic question that people meeting for the first time make small talk with. When I was able to work, this seemed like a natural question to ask and I was happy to share and to hear what others had to say. Since having to stop working due to my Ankylosing Spondylitis and Primary Sclerosing Cholangitis, I have a hard time with that question and I really don’t know what to say when someone asks me “What do you do?” I can say that I’m a stay at home mom, but I’m not personally satisfied with that answer because it’s not true. I wouldn’t have ever chosen to not work so it doesn’t feel like I’m sharing who I truly am. Also, the few times I said I was a stay at home mom to keep the conversation moving along, the reaction I got from people was “Wow, must be nice”. It’s one of the most infuriating responses because being a stay at home mom isn’t easy in the first place and it’s that much harder when you have a chronic illness.

On the other hand, I can tell my truth and say that I’m disabled and not working. In a first encounter, people don’t always notice my disability. As those of you who suffer with Ankylosing Spondylitis or another chronic illness know, many of the symptoms aren’t visible and if I’m not doing a lot of walking, I can blend in with abled people no problem. That makes me stating that I’m disabled so much more confusing for people who are meeting me for the first time. I feel like I need to explain my story, but I have to do it quickly because after all this is just small talk, so it ends up being a mish mash of sharing too much mixed with being vague.

“What do you do?” I never thought such a seemingly innocent question would make me so uncomfortable. It’s actually a very personal question when you think about and I would argue beyond small talk. It’s something to consider when meeting someone for the first time. You never know what people are going through. They could’ve just been fired or laid off or just sick like me. I’m not saying that it’s not an important question. I’m just saying that it doesn’t have to be a question that we lead with during small talk because at the end of the day, it’s not small talk for everyone.

Please comment below. I would love to hear what you think.

I would also appreciate a like and follow 😊

Bringing the invisible disease out of the shadows

I was diagnosed with Ankylosing Spondylitis (AS) when I was 20 years old which means that I was diagnosed 21 years ago. I was young and many thought too young for arthritis. When I told people I had Ankylosing Spondylitis they would hear me say arthritis and think of their grandparents and not fully understand the severity of my disease and the risks that come with it. Ankylosing Spondylitis can often be an invisible disease in young people and if you’re fortunate, even when you’re older too. There are so many layers to Ankylosing Spondylitis. A pain layer. A mental health layer. A risk assessment layer. A self advocate layer. A symptom management layer. A medication layer. A side effect layer. Very few people get to see any of these layers while they all play an active role in my day to day life.

Exhaustion isn’t always visible because sometimes the mind is ready to go but the body wants no part of it. When I was in my twenties, I felt a lot of pressure to go out when I really didn’t want to because I was tired. People thought I was a home body but I was actually a sick body. Stiffness, rib pain, spine spasms are other examples of physical symptoms that can go unnoticed. Anxiety and depression aren’t always visible either. Talking about my disease often felt like a heavy topic because there is no cure and it isn’t straightforward. The anxiety I felt about being diagnosed with a serious disease that I had never heard of was overwhelming. My anxious mind infiltrated every aspect of my life. I questioned whether my life would have to change, how quickly would the disease progress, whether or not I would be the worst case scenario, etc. I also felt very sad that I had been given this fate at such a young age. I definitely played a role in trying to keep my Ankylosing Spondylitis invisible which only made me that much more exhausted. Sometimes it wasn’t even a matter of wanting to hide it. It just never felt like the right time to talk about it. I didn’t let any of my university professors know and many of my friends had no idea that I was struggling with a chronic illness. I regret that and if you’re young and have Ankylosing Spondylitis and are reading this, talk about it. Share your story. Your symptoms are legitimate even if they aren’t visible. Facing Ankylosing Spondylitis at a young age made me stronger because it helped me understand how quickly life can change and it really taught me to appreciate the little things.

Now that I’m in my 40s, I have no desire to keep my disease invisible and I see the value in raising awareness and sharing my story. I also don’t have the same spring in my step so my Ankylosing Spondylitis has become physically visible. Self-acceptance has brought my disease out from the shadows and I’ve learned to show myself love and compassion. Bringing awareness to Ankylosing Spondylitis is so important because the more people know about the disease, the more visible it becomes, and the more supports become available both within the community and within your own social circles.

Ankylosing Spondylitis also felt like an invisible disease because 20 years ago, people didn’t post on the internet and there was very little information out there about it. I didn’t realize all of the communities that have developed online on Instagram, Twitter and Facebook since my diagnosis and I think it’s amazing that there are so many community supports out there for those of us with Ankylosing Spondylitis or any autoimmune disease. Ankylosing Spondylitis awareness is well on its way but it hasn’t reached enough of the general public yet. Many people still aren’t really aware of Ankylosing Spondylitis but the fact that there are communities of people out there now who understand what I go through on a daily basis is huge progress because it’s a good feeling to know that I’m not alone.

There is still lots of work to be done on the awareness front. Many people don’t understand our day to day and the risks we face with our medications in order to simply function and have a better quality of life. I have been in the room when a biologic commercial has aired and people laughed and said “who in their right mind would take that?” I do, and it’s not funny. The side effects are scary but that’s how serious my disease can be. So instead of laughing and thinking “who in their right mind would take that?”, I’m hoping that eventually there will be a level of awareness about autoimmune diseases so that the snide remarks will be replaced with a sincere understanding of the risks that so many of us with autoimmune diseases have to face.

I apologize for the lack of Star Wars music. I’m just as sad as you are.

There are many people fighting their autoimmune disease battle in the shadows. I want you to know that there are a lot of supports out there through group meetings, online communities, arthritis organizations, webinars and blogs. This disease doesn’t have to remain invisible. I hope you will consider sharing your story because I personally would love to hear it. Through awareness there is hope and when there is hope there is purpose.

If you enjoyed this article or can relate to it, I would really appreciate a like and a follow 😊.

Side effects from medications can be as bad as the disease itself: Here are 10 solutions that work for me

Many of us who have autoimmune diseases have to take medications that cause a lot of side effects. You know those commercials that are on TV that talk about the drug for about 5 seconds and the rest of the commercial is spent listing the possible side effects? People wonder “Who in their right mind would even touch that drug?” 🙋🏼‍♀️ Me. It’s hard for others to understand why we would take a drug that sounds so detrimental to our health. I’ll tell you why….because the “possible” side effects are worth it to control the disease. The key word is “possible” and that’s enough to sway many of us to take the risk because we are suffering and desperately yearning for a better quality of life. We don’t have a guarantee at a long, healthy life. In fact, some of us have a decreased life expectancy because of our disease. If there is something that can help me walk around and function and slow my disease down, I will take it, because without it, for me at least, my disease is very painful and unmanageable.

There are so many different drugs used for autoimmune diseases. I’ve actually tried quite a few of them throughout my health journey because I couldn’t find one that would work for me, but that story is for another time. There are many commonalities amongst the different drugs and the side effects can be very similar across the board. For example you may experience headaches, nausea, fatigue, a decreased appetite, hair loss, weight gain, chills, weakness, hives and the list goes on. It can also cause your immune system to be compromised which makes you more vulnerable to infections and puts you more at risk for serious illnesses such as cancer.

I spoke about Psoriasiform dermatitis in a previous post of mine. Psoriasiform dermatitis is an example of how a biologic can cause side effects that are an entire medical issue on their own. It’s more like having another disease with a separate specialist (Dermatologist) rather than it simply being a side effect. Another example of side effects that are on the more serious side are infections. I have had several, most notably cellulitis and sepsis. Since my immune system is compromised, I’m much more fragile when I come into contact with a virus or bacteria. Cellulitis is a common, potentially serious bacterial skin infection. The affected skin appears swollen and red and is typically painful and warm to the touch.

Another serious infection is sepsis. Sepsis came out of nowhere and was the worst experience of my life. It is a potentially life-threatening condition that occurs when the body’s response to an infection damages its own tissues. Sepsis may progress to septic shock. Luckily, mine didn’t progress to septic shock but it was still a really scary experience that required emergency surgery and being admitted to hospital for several days. It took me months and months to recover. I’m still working on it.

With all of these side effects at play, there are many things that I do to make myself feel better.

1) Talk to your doctor and journal. It’s so important to talk to your doctor to make sure the side effects are expected. Sometimes there are other options and your doctor might weigh switching you to a different drug depending on the seriousness of the side effect. The reason I went through so many biologics is because I kept an open line of communication with my doctor. When I would start a new medication, I would journal my symptoms and how I was feeling day to day so that when I met with my rheumatologist again, I had lots of useful information for her to base her decision on. I started journaling because there were times I would go to my appointment and I wouldn’t provide the entire picture of how I was feeling day to day because I couldn’t remember it all. I would leave the appointment and all these thoughts would come flooding in and I would regret not telling her this or that. I also tend to minimize things so the journal really helped me tell the full story. Since it can be months in between appointments and you don’t usually have a lot of time with the doctor, I would go through my journal the day before and summarize it for her.

2) Rest. Don’t feel guilty or afraid to admit that you just can’t do something. You don’t need to be exhausted to rest. As unpredictable as autoimmune diseases can be, there is some predictability to them as well. I know that an infusion of Remicade makes me weak, tired, nauseated, it gives me headaches and pins and needles in my legs. I set things up ahead of time so that after my infusion I can rest and I take the following day off. Sometimes I would purposely schedule my infusion on a Friday so that it wouldn’t affect my work week and my day off would fall on the Saturday when I could count on some help. I also set my Methotrexate on a day that I can schedule rest around.

3) Ask for help. I’m a mom so I don’t get much rest, but I’ve learned to lean on my husband and teach my son independence. It’s all about planning time for yourself. My son has a routine when I’m post infusion and I always treat myself to a night off from cooking dinner and order in. I’ve talked about the guilt I feel when my disease impacts others so I try really hard to be as positive and present as I can be. This can really confuse friends or extended family because they see me having a positive attitude and participating in conversations but they don’t see me collapse on my bed as soon as the couple of hours we spent together are over and we go our separate ways. Many people might not know how you’re truly feeling unless you take the time to communicate it to them. Not just by saying “I’m tired” but explaining it so they understand the effects of the disease or the side effects of the medications you’re on. I’ve had to ask for help many times throughout my health journey. It’s ok to take the mask off and be vulnerable once in a while.

4) Avoid caffeine. Switch to an herbal tea if possible. Caffeine can really aggravate side effects and there are many great options now when it comes to herbal teas. Peppermint or Ginger tea is great for my nausea. Apple cinnamon tea is a really good option since cinnamon lowers inflammation and is loaded with antioxidants. I find a tea very comforting and soothing and the right one can really help with some of the side effects from medications.

5) Tricovel and Leucovorin. For hair loss I take Tricovel and Leucovorin. It works for me.

6) Cannabis. When nausea is really bad or if I have a loss of appetite, I use cannabis. Oils are recommended and they take about 15-45 minutes to have an effect.

7) Meditation. When I can’t get comfortable due to side effects, I meditate. Breathing in and out improves circulation, reduces stress by calming the mind and helps with nausea.

8) Epsom salt bath. Epsom salt promotes sleep and reduces stress. It helps with constipation, recovery and reduces pain and swelling. I get a much better sleep when I take an Epsom Salt bath.

9) Drink more water. Staying hydrated is so important when you’re not feeling well. Even if you can’t eat anything, it’s important to keep drinking water. If you don’t like drinking water, I totally understand. Soups are great as well, even broth on its own. I’m sort of tea, soup and smoothie obsessed (all liquids that can keep you hydrated). If you make soup, always try to double the recipe and freeze some so that you have some on hand for those days when you don’t have the energy to cook.

10) Aromatherapy: Scent-infused oils heated in a diffuser to make a room fragrant can create a very relaxing environment. You can also add oils to your bathwater for a similar effect. This technique may help ease nausea, pain, and stress. Scents that I find relaxing are lavender and peppermint but it’s definitely a personal preference.

Side effects are unfortunately something I have to live with because they outweigh how I feel without my medication. I would love to hear about strategies that you use to cope with your side effects in the comments below.

Please give me a like and a follow if you found this article useful 🙂

Thinking about ordering some CBD oil or other cannabis products online but aren’t sure how to do it…let me walk you through how easy it is

There are many different websites that sell cannabis online. It can be overwhelming with where to start. I will walk you through how easy it is for me to buy my prescription CBD oil online. I got my prescription from a doctor at a Pain Clinic because I really want to see if a dosing schedule and someone overseeing it all will work for me but you don’t need a prescription to buy cannabis here in Canada. Every province has their own way of selling it. In my province you can purchase cannabis at https://ocs.ca, but I will go over that later in the post.

To purchase my prescription CBD oil, I go to https://emblemcannabis.com. Your doctor will send the prescription right to them and someone from Emblem will contact you to ask you questions, go over the dosing schedule and even offer to help you order your first purchase with you over the phone. By the way, you can always call them and order over the phone if you’re not comfortable doing it online. Here are some step by step photos of how I order my CBD oil online.

You will receive your Client ID from Emblem once they receive your prescription.

To purchase from the Ontario website where you don’t need a prescription if you’re a resident, you have to go to https://ocs.ca as I mentioned above.

The website is set up in a similar way. If you want to buy cannabis to smoke, you would look under dried flower, click on filter and then it allows you to pick between the different kinds. To learn more about the differences, please read the post on my blog called “How cannabis has helped my Ankylosing Spondylitis and my Primary Sclerosing Cholangitis.

There’s also a “Learn how to choose cannabis” tab at the top of this page if you still aren’t sure what you should purchase.

The product with either website arrives in an unidentifiable package, hand delivered to your door. You will be asked to provide identification to the delivery person.

If you have any questions, please ask them in the comments below. If you enjoyed this article, I would really appreciate a like and a follow. 😊

Who’s in your corner? The importance of finding a committed healthcare team

If you aren’t making sure that you have the best healthcare team you can get, then I hope that after you’re done reading my article, you will start to reflect on your healthcare team in order to decide whether they are the right fit to look after the most precious thing you have, your health. I call it a healthcare team because they should all be working together to get you better. Many of us just stick with the doctor we were referred to or the physiotherapist that is just around the block, but when you have an autoimmune disease, it’s important that those that are taking care of you have your best interest at heart and know about your disease because without my health, there is no me.

If I can give any advice, it’s to make sure you have a good relationship with your rheumatologist/specialist. They are making decisions about your health and if you have Ankylosing Spondylitis, early intervention and proper disease management can be life changing. They are also the person that will have to go to bat for you if your disease ever becomes so unmanageable that you have to decrease your work hours, get work accommodations or if you can no longer work. Many of us don’t want to think about that but it happened to me at a young age and out of nowhere. So much of what happens with LTDI (Long Term Disability Insurance) or any disability claim through the government (ODSP, CPP) is based on your rheumatologist’s notes, letters they write for you and forms they fill out requested by your employer, the government, or your insurance provider. If you don’t have a good relationship, or if your doctor doesn’t have good communication skills, or if you don’t think your doctor will have your back, do some research and find a new one. You deserve the best care and every doctor isn’t as invested as you may need them to be. I will say, most of the doctors that I have encountered have been amazing. Talk to your doctor. Be human with them. They are human too and a human connection can be very powerful. Having someone who believed in me because they witnessed my entire decline themselves was empowering. My rheumatologist knew I was trying to live a “normal” life. I was young and didn’t want to accept what was happening to me. I would push myself to work more only to have to pull back again because of a flare or an infection. So after years of this back and forth battle, when I finally understood that my body just couldn’t handle more, she was there to tell the world for me.

Another really important member of my healthcare team is my physiotherapist. I’ve had several different physiotherapists and I just kept looking until I found the right fit for me. There were times when I stopped going to physio because I didn’t see the benefit. Now that I found the right one, she has become a valuable member of my team. She is there for pain management with acupuncture moving needles, the TENS machine or just to stretch out my body. Or, if I’m having a good day, she gets me working out. Having a physiotherapist that understands your disease is worth searching for. Don’t be afraid to ask them questions about what their plan would be for someone with your disease. You can interview them and assess whether they are the right fit for you.

Acupuncture with moving needles works to help temporarily manage my symptoms
The TENS machine is another great option for temporary relief of symptoms or when they’re more severe than normal.

A massage therapist is also key. When I’m stiff, it can be pretty bad. I tense my muscles and can sometimes just stay like that and not even realize it. When I get my massage, it’s always surprising how sore I actually am. I’ve also had several massage therapists and I finally found one who truly understands Ankylosing Spondylitis. He’s also an osteopath and is really passionate about localizing the pain and understanding why it’s there. Nothing is perfect and just as I prefer my dental hygienist not to talk to me while I have all kinds of dental tools in my mouth, I would also prefer that my massage therapist, where there’s literally a sheet between us, not speak either, but I seem to know about his entire life. Why are these people always the most chatty? 🙂

As a side note, your physiotherapist and your massage therapist write down notes about what you tell them. I didn’t know that until I requested my file. This is important only because I think many of us downplay how we are feeling when we get asked the general question “how are you?” My default answer to this question is “I’m ok”. It’s my go to. It’s my avoidance answer. Doesn’t everyone just say that? I say I’m ok but how I’m actually feeling is “I’m exhausted, I haven’t slept, I’m really stiff, I can’t walk today, I have neck pain, a stabbing pain in my spine and my ribs are on fire”. I often think it’s just a question that people ask to make small talk and my truthful answer to that question doesn’t really lead to small talk. Anyway, please learn from me and don’t ever say “I’m ok” to your medical health team unless you really are ok because it may come back to haunt you if you ever find yourself in the position that I did with an insurance company looking for any reason to prove that I’m not really as sick as I say I am. When speaking to your healthcare team, speak in specifics at all times.

Even though I see my rheumatologist way more than my family doctor, she still plays an important role on my healthcare team. My family doctor is there for me for all things other than my AS and PSC but she ends up having to treat many of the side effects from my meds. Since I’m immune compromised, I get sick often and she always makes time to see me. I copy her on all of my blood work (you can ask the lab to add a doctor to the results yourself) and I also make sure she’s copied on any imaging as well. The more in the loop your team is, the more they care about you and the easier it is for them to help you.

Family and friends are the final pieces of my healthcare team. They obviously don’t count as “medical” but they can have a huge impact on your health. I keep a small circle of friends because there’s not a lot of me to go around and I just don’t have the energy to invest into too many friendships. I also need friends that understand my unpredictability and that’s just not for everyone. I can’t handle negativity or stress from friendships since I have enough of that going on with my health, so I surround myself with people who uplift me, make me laugh or are just easy to be around. It’s important to reach out to friends and family and to let them in on your story. You would be surprised how many people don’t truly understand what you’re going through on a daily basis and there’s something cathartic about letting them in on your spoons.

Thanks for listening!

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The disabled mom

When I was in remission, I worked really hard at anything that I did. My husband met me that way. We actually went to Australia for our honeymoon and went scuba diving in the Great Barrier Reef. It was the experience of a lifetime. I had ankylosing spondylitis already at that time but my disease was well controlled with a drug called Celebrex combined with a yearly injection of Cortisone under ultrasound.

When we got back from the honeymoon, we seriously started thinking about kids. Because of my autoimmune disease, the thought of having kids wasn’t this pure natural joy and excitement. I had many questions that popped into my head because of my autoimmune disease. It’s hard not to feel like you’re always the one thinking of the what ifs but that’s what comes with having an autoimmune disease that is unpredictable. Thinking about having a baby should be full of happy thoughts and positivity but instead I got scared. Thoughts like, will I be able to carry the baby with no meds and Ankylosing Spondylitis? Will I be able to just go back on my meds? Will they still work? Will I remain in remission? Will I pass it on to my baby? It’s a dark cloud that can follow those with an autoimmune disease. We are unpredictable so anxiety can go hand in hand with the disease. A metaphor I like to use to explain how an autoimmune disease works is that when I’m in remission, I’m like a dormant volcano. It’s not erupting now but it’s supposed to erupt again and I couldn’t help but worry that a pregnancy would be just enough to do that.

I spoke to my rheumatologist about having a baby and I asked the very questions I was worried about. She offered me the best advice that she could based on her experiences, her research and her knowledge of Ankylosing Spondylitis. She really didn’t see any risk in me having a baby. There was no way for her to know what would happen to me. Honestly, she told me exactly what I wanted to hear. I wanted to have a baby and no matter what she would’ve told me, I probably would’ve gone ahead with a pregnancy. I truly do believe that many people who have Ankylosing Spondylitis and have their disease under control have very good pregnancies and no issues afterwards. My rheumatologist wouldn’t have ever recommended anything that could harm me. I just don’t want my experience to turn anyone off from getting pregnant if they have Ankylosing Spondylitis. Please let me know if I’m wrong in the comments below and you experienced what I did. I also want to repeat that I would do it all again just to have my son. A second pregnancy is out of the question for me because now I have a son who needs me and I can’t risk getting that sick again with him in the picture.

There’s a lot of guilt that I live with as a disabled mom. The guilt of my son being an only child weighs on me. The guilt of not being able to lift my son out of his crib weighs on me. The guilt of not being able to breastfeed for more than 3 months weighs on me. Those days when I had to cancel a play date because I didn’t feel well, weigh on me. The missed baseball games, hockey games, the inability to participate in an activity, those days after my infusion, it all weighs on me. I had to learn that perfection was an illusion and I made a commitment that I would never take an absence from something lightly and I would be there more than not. And I’m fortunate enough to not have to miss much. Being compassionate to myself was really key in finding peace with not being perfect. Being hard on myself by comparing myself to completely healthy moms and carrying all of that weight on my shoulders definitely had an impact on my Ankylosing Spondylitis. Stress is a killer and an AS inflamer.

After giving birth to my son, they didn’t know what was wrong with me. My blood work was alarming, I wasn’t myself and I was so stiff that I couldn’t lift my son out of his crib. Being a new mom and having to stress about simply lifting my baby from his nap made me feel helpless and hopeless. The amount of stress that this unknown played in my life was debilitating and had a drastic effect on my physical and mental health. I lost a scary amount of weight, which I would normally accept with open arms, but even I was alarmed. I now know that it was all due to stress. I didn’t realize the enormous impact that stress can have on our physical health. I really characterized stress as a mental health problem until it nearly killed me physically. I so desperately wanted to be the perfect mom. My friends all seemed to be doing it right and I just couldn’t keep up. I had so many medical appointments, biopsies, MRIs, ultrasounds, more blood work that it was hard to keep just that straight. They discovered that I had Primary Sclerosing Cholangitis (PSC). I finally knew what it was. The unknown became known, but wait, what is Primary Sclerosing Cholangitis? As I learned more about it l, I felt like I knew what I was dealing with and even though I wasn’t thrilled about the outcome, at least I could make a plan. I know too many people who avoid the doctor because they say they don’t want to know. You NEED to know. No there is no cure and there are no meds for Primary Sclerosing Cholangitis (for now), but I can do natural things to help myself like drink milk thistle, stop drinking wine (I didn’t drink any alcohol other than wine) etc. I can extend my liver’s life because I know. And I have done exactly that. I have had PSC for 10 years now and many need a transplant 10 years post diagnosis. My liver looks good. Knowledge is power.

I make all kinds of sacrifices to ensure I stay as healthy as possible and my son is my inspiration. So if you’re ever debating whether or not to have kids because of your Ankylosing Spondylitis, talk to your rheumatologist, and if they support it, do it. Don’t let the fear of what ifs dictate your life. Is it hard? 100% yes but it’s possible and the best part of my life. He motivates me to be better. He gets me back on track if I fall off just because he needs me. And if I hadn’t walked right through those fears, the world would be missing out on such an amazing human being.

I would love to hear about your experiences or any strategies you may use in the comments below.

Thanks for listening! Please like and follow. It would mean so much to me 😊