Samantha Bowick

@skbowick | contributor
Hi! I'm Samantha Bowick and I have a Master of Public Health. I'm the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options", "Living with Alpha-1 Antitrypsin Deficiency", “Living with Endometriosis Workbook and Daily Journal”, and “Living with Kidney Stones”. I founded "Chronic Illness Support, LLC". I want to use my experience with endometriosis and other chronic illnesses to help others. My website is https://www.samanthabowick.com
Samantha Bowick

Tips for Planning Ahead With a Chronic Illness

Planning while living with a chronic illness can be extremely exhausting. For me, it’s crucial to have a system in place that makes planning the day out as easy as possible. This is something I’ve had to do my entire adult life. Having a chronic illness makes it more difficult to travel, find places to eat if you have diet restrictions, as well as do day to day tasks like take a shower, cook and clean. I’m going to go through some things that I have found helpful while balancing life with a chronic illness: 1. I use a weekly planner to write down everything I need to do for the next week. This includes things like doctor’s appointments, grocery shopping, vacuuming and/or cleaning, laundry, class schedules (while I was attending college), etc. I try to limit activities that are more exhausting in a given day to two.  If I have a doctor’s appointment, I’m not going to plan to do much that day because I need to mentally prepare for my appointment and don’t know how long my appointment is going to last. 2. I limit my travels. Lately, when I’ve been traveling, it’s been for day trips to visit family, friends, and attend doctor appointments. I try not to do more than two day trips in a given week because of how I may feel after. I plan out as much as I can, like what I will be eating while I’m traveling. I take some type of granola bar with me to snack on just in case I need it. Depending on how far I’m driving, I try to have at least one rest stop that allows me to get out of my car, stretch, use the restroom, get gas, etc. It’s also important that I have nausea and pain medication on hand (if I have any) just in case these symptoms arise while I’m gone. I use my GPS to know how long my trip will be and where the halfway point will be so I can plan when I’m going to stop at a rest area. 3. I schedule rest days during the week. I try to give myself at least one rest day (lately more with the pain I’ve been experiencing) where I don’t have anything planned and can relax as much as possible. This may consist of working on my phone or computer, but I’ll be laying in my bed or sitting on the couch while doing so. 4. I make use of planning apps. Personally, I like to use the Calendar and Notes apps on my phone to help me keep track of what I need to do each week. It can be helpful to have the same information in multiple places, especially if you are experiencing symptoms that can be distracting like pain and fatigue. Living with a chronic illness is unpredictable, but trying to plan for the day or week ahead can still help with managing all the things we still have to keep up with, despite our pain and illness. What do you find is helpful for you in planning out your day while functioning with a chronic illness?

Community Voices

One thing I wish more people understood about my health condition/disability is...

<p>One thing I wish more people understood about my health condition/disability is...</p>
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Samantha Bowick

Knowing the Long-Term Side Effects of Your Medication

Some medications are necessary to keep people alive — such as radiation for cancer and augmentation therapy for alpha-1 antitrypsin deficiency — which can outweigh the side effects. However, with  other illnesses (such as endometriosis), those struggling are trying to decrease their pain and other symptoms as well as be able to bear children. I talk about hormone agonist medication frequently because of what I and so many others who are living with endometriosis have been through when we tried this as a treatment. This hormone agonist is an injection used to treat prostate cancer, but many doctors/gynecologists also use it to treat endometriosis. Because it is used for cancer treatment, this makes it a chemotherapy drug. Endometriosis is not cancer even though it can spread throughout any part of the body. So why are doctors trying to treat an illness that isn’t cancer with a chemotherapy drug? This is one question that has yet to be answered. Side effects that people who use hormone agonists can experience and doctors may not tell patients about include osteoporosis (thinning of the bones), suicidal ideations, brittle or breaking teeth, hot flashes/menopause/night sweats and headaches, among others. Oftentimes, these side effects are irreversible — meaning once you have them, they don’t improve. For example, once you break a tooth or have osteoporosis, you can try to prevent breaking other teeth by taking more vitamin d and calcium, but you can’t grow a tooth to replace it. Once you injure a bone, you can’t go back in time to not injure the bone. You can use crutches or a splint to try to heal the bone as much as possible, but it will never be the same. This is how side effects can be life-altering. Hormone agonists aren’t the only medication that cause harmful side effects, which may be worse than what the medication is trying to treat. Should money outweigh the side effects patients may experience from a medication? No. Is it true that doctors can’t predict which side effects each patient will have from the medication? Yes, but patients still have the right to know all of the information about the drug from their doctor upfront. Should doctors give patients all of the information about a medication before asking the patient if they want to use it as a form of treatment? Yes. Unfortunately, this isn’t how the health care system or the world works. We are responsible for looking up information about our illness, treatment options and any other important information that could affect our health care. We have to be our own advocate. Please research the treatment options being offered for your chronic illness as well as other options you may have before making a decision, because side effects may not go away and can be life-altering. It’s important to know the side effects that are possible and weigh your options with the illness you are trying to treat.

Samantha Bowick

What to Expect From Pelvic Floor Physical Therapy

Pelvic floor physical therapy is a treatment option available that may help with pain related to endometriosis , polycystic ovary syndrome (PCOS) , interstitial cystitis (IC) and other illnesses that can lead to pelvic floor dysfunction. It’s understandable that those who are strug gling with endometriosis can have pelvic floor dysfunction as it’s hard to relax when your abdomen and/or other areas are in constant pain. I was diagnosed with endometriosis in 2010 and never heard the words “pelvic floor physical therapy” until 2013, from a doctor at the Mayo Clinic. No gynecologist had even mentioned it to me before this time. When I first heard it, I had mixed feelings about it, but I was also desperate to be out of pain. I made an appointment with a pelvic floor physical therapist. The closest one to me is about a six-hour round trip. I first started going once a week because my physical therapist felt this was the best option for me until I could get rid of some of my spasming and pain. She did an initial assessment for my first appointment to see where I was, so we could compare it when I was discharged and hopefully see improvement. During each appointment, she did internal biofeedback and connective tissue manipulation. Internal biofeedback helps patients to learn how to relax their pelvic floor and strengthen it. Something a lot of people who have pelvic floor spasms struggle to do is relax because of disease or trauma. This is why every time I had a pap smear, I would be in excruciating pain because I was unable to relax before they started the exam. In my case, the biofeedback sensor was connected to my therapist’s computer and inserted vaginally. A graph displayed to show how relaxed my pelvic floor was, which was very little during my first appointment. She would do stretches and exercises with me to help me learn how to relax as well as send me home with some to do to help in-between sessions. Connective tissue manipulation involves stretching tissue to allow for more mobility and blood flow. She used this technique from my back and my stomach to my thighs. This would also help decrease my pelvic floor spasms because everything is connected. It can be difficult to do this on yourself because when you are rubbing your skin and feel pain, we tend to stop because we want the pain to stop. Pelvic floor physical therapists may recommend you purchase a dilator to help with stretching at home as mine did and it was helpful. “Heal Pelvic Pain: A Proven Stretching, Strengthening, and Nutrition Program for Relieving Pain, Incontinence, IBS , and Other Symptoms Without Surgery” by Amy Stein, M.P.T. is a great book that my pelvic floor physical therapist recommended I read. Personally, I think anyone who has surgery, pelvic disease or gives birth should be referred to a pelvic floor physical therapist because these can all be traumatic to the pelvic area. After about six months of going to pelvic floor physical therapy, I was discharged because my spasms had decreased significantly. However, some of my abdominal pain was still there because I had endometriosis on my o varies. This was before I had my hysterectomy. I’m so thankful for my pelvic floor physical therapist as she made me feel comfortable during each of my appointments and was able to help me decrease my pain. I still do some of the stretches at home, six years later. Talk to your doctor about referring you to a pelvic floor physical therapist if you think it would be helpful for you. If you do go to pelvic floor physical therapy, I want you to know what to expect, know there is nothing wrong with you and know you are not alone. I felt so alone because, at the time, I hadn’t even heard of it let alone know anyone who had gone or was going. Let me know if you have any questions! I hope you find this information helpful.

Samantha Bowick

What to Expect From Pelvic Floor Physical Therapy

Pelvic floor physical therapy is a treatment option available that may help with pain related to endometriosis , polycystic ovary syndrome (PCOS) , interstitial cystitis (IC) and other illnesses that can lead to pelvic floor dysfunction. It’s understandable that those who are strug gling with endometriosis can have pelvic floor dysfunction as it’s hard to relax when your abdomen and/or other areas are in constant pain. I was diagnosed with endometriosis in 2010 and never heard the words “pelvic floor physical therapy” until 2013, from a doctor at the Mayo Clinic. No gynecologist had even mentioned it to me before this time. When I first heard it, I had mixed feelings about it, but I was also desperate to be out of pain. I made an appointment with a pelvic floor physical therapist. The closest one to me is about a six-hour round trip. I first started going once a week because my physical therapist felt this was the best option for me until I could get rid of some of my spasming and pain. She did an initial assessment for my first appointment to see where I was, so we could compare it when I was discharged and hopefully see improvement. During each appointment, she did internal biofeedback and connective tissue manipulation. Internal biofeedback helps patients to learn how to relax their pelvic floor and strengthen it. Something a lot of people who have pelvic floor spasms struggle to do is relax because of disease or trauma. This is why every time I had a pap smear, I would be in excruciating pain because I was unable to relax before they started the exam. In my case, the biofeedback sensor was connected to my therapist’s computer and inserted vaginally. A graph displayed to show how relaxed my pelvic floor was, which was very little during my first appointment. She would do stretches and exercises with me to help me learn how to relax as well as send me home with some to do to help in-between sessions. Connective tissue manipulation involves stretching tissue to allow for more mobility and blood flow. She used this technique from my back and my stomach to my thighs. This would also help decrease my pelvic floor spasms because everything is connected. It can be difficult to do this on yourself because when you are rubbing your skin and feel pain, we tend to stop because we want the pain to stop. Pelvic floor physical therapists may recommend you purchase a dilator to help with stretching at home as mine did and it was helpful. “Heal Pelvic Pain: A Proven Stretching, Strengthening, and Nutrition Program for Relieving Pain, Incontinence, IBS , and Other Symptoms Without Surgery” by Amy Stein, M.P.T. is a great book that my pelvic floor physical therapist recommended I read. Personally, I think anyone who has surgery, pelvic disease or gives birth should be referred to a pelvic floor physical therapist because these can all be traumatic to the pelvic area. After about six months of going to pelvic floor physical therapy, I was discharged because my spasms had decreased significantly. However, some of my abdominal pain was still there because I had endometriosis on my o varies. This was before I had my hysterectomy. I’m so thankful for my pelvic floor physical therapist as she made me feel comfortable during each of my appointments and was able to help me decrease my pain. I still do some of the stretches at home, six years later. Talk to your doctor about referring you to a pelvic floor physical therapist if you think it would be helpful for you. If you do go to pelvic floor physical therapy, I want you to know what to expect, know there is nothing wrong with you and know you are not alone. I felt so alone because, at the time, I hadn’t even heard of it let alone know anyone who had gone or was going. Let me know if you have any questions! I hope you find this information helpful.

Samantha Bowick

Doc-Anxiety and Chronic Illness

Living with chronic illnesses is a challenge. We have to go to doctor appointments regularly to have our blood tested for different things. We have to have MRIs, CT scans, ultrasounds, colonoscopies, laparoscopic surgeries or other surgeries and procedures. Most likely, we have experienced at least one doctor who didn’t believe us, who wouldn’t listen to us and what treatment options we wanted to try, who let their ego get in the way of standard health care. Even though we may find a great doctor who listens to us and what we want to do, the bad apple can ruin doctors in general for us. When I first started going to the doctor before I was diagnosed with endometriosis, I trusted doctors. I believed what they were telling me and didn’t think to do my own research outside of what they were telling me. They took an oath to do no harm, right? Yes they did, but that’s not 100 percent foolproof. They are human and don’t always have our best interest at heart. They may be set in their own ways and don’t have great bedside manner for their patients. I have encountered several doctors like this, which in turn has lead me to be anxious any time I go to the doctor now. I ask myself questions, such as: Will this doctor believe me and listen to me? Will this doctor treat me like I don’t know what I’m talking about? Will this doctor do anything for my pain or just let me suffer because they don’t want to admit they don’t know the answer and refer me to a specialist? Will this test show something is going on or will it show everything is “normal” and my doctor will tell me there’s nothing they can do for me? Waiting in the waiting room to be called back to a patient room also causes anxiety. Waiting for test results causes anxiety. Will I have this illness? Will I be able to get treatment? Will I ever be pain free? Even now after 10 years of going back and forth to different doctors, going to the doctor increases my anxiety: let’s call it “doc-anxiety.” I get extremely nauseous and sweaty. My heart beats faster, sometimes my blood pressure is higher than it would be normally and I have a million things running through my brain. I dread going to the doctor even though I make lists of questions I want to ask about my illness, treatment options, my symptoms, etc. If I didn’t make these lists, my doc-anxiety would be more increased. I try my best to take slow, deep breaths and think about the beach (a place I love) while I’m waiting, but sometimes it isn’t enough. Depending on how my appointment went, my doc-anxiety may still be there for the rest of the day or longer. If you have doc-anxiety or any type of anxiety for that matter, know you are not alone. Know that having anxiety doesn’t make you weak. There are good doctors out there, and I have to keep that in mind anytime I go to the doctor. Sending you hugs. Follow this journey on Samantha Bowick’s blog.

Samantha Bowick

Doc-Anxiety and Chronic Illness

Living with chronic illnesses is a challenge. We have to go to doctor appointments regularly to have our blood tested for different things. We have to have MRIs, CT scans, ultrasounds, colonoscopies, laparoscopic surgeries or other surgeries and procedures. Most likely, we have experienced at least one doctor who didn’t believe us, who wouldn’t listen to us and what treatment options we wanted to try, who let their ego get in the way of standard health care. Even though we may find a great doctor who listens to us and what we want to do, the bad apple can ruin doctors in general for us. When I first started going to the doctor before I was diagnosed with endometriosis, I trusted doctors. I believed what they were telling me and didn’t think to do my own research outside of what they were telling me. They took an oath to do no harm, right? Yes they did, but that’s not 100 percent foolproof. They are human and don’t always have our best interest at heart. They may be set in their own ways and don’t have great bedside manner for their patients. I have encountered several doctors like this, which in turn has lead me to be anxious any time I go to the doctor now. I ask myself questions, such as: Will this doctor believe me and listen to me? Will this doctor treat me like I don’t know what I’m talking about? Will this doctor do anything for my pain or just let me suffer because they don’t want to admit they don’t know the answer and refer me to a specialist? Will this test show something is going on or will it show everything is “normal” and my doctor will tell me there’s nothing they can do for me? Waiting in the waiting room to be called back to a patient room also causes anxiety. Waiting for test results causes anxiety. Will I have this illness? Will I be able to get treatment? Will I ever be pain free? Even now after 10 years of going back and forth to different doctors, going to the doctor increases my anxiety: let’s call it “doc-anxiety.” I get extremely nauseous and sweaty. My heart beats faster, sometimes my blood pressure is higher than it would be normally and I have a million things running through my brain. I dread going to the doctor even though I make lists of questions I want to ask about my illness, treatment options, my symptoms, etc. If I didn’t make these lists, my doc-anxiety would be more increased. I try my best to take slow, deep breaths and think about the beach (a place I love) while I’m waiting, but sometimes it isn’t enough. Depending on how my appointment went, my doc-anxiety may still be there for the rest of the day or longer. If you have doc-anxiety or any type of anxiety for that matter, know you are not alone. Know that having anxiety doesn’t make you weak. There are good doctors out there, and I have to keep that in mind anytime I go to the doctor. Sending you hugs. Follow this journey on Samantha Bowick’s blog.

Community Voices

Have you ever heard of #SphincterOfOddiDysfunction? I hadn’t until about six months ago in March 2019 when my gastroenterologist first mentioned it to me.

I had just had lithotripsy to bust a kidney stone so I could pass it as I was unable to pass it on my own and was in a great deal of pain. I had lithotripsy in January, but was still in the same amount of pain that I was in before the procedure. This led me to go to the emergency room for the fourth time in four months. I was told that I had elevated liver enzymes, but they couldn’t tell me why, so I was referred to a gastroenterologist.

At my first appointment, my gastroenterologist told me I need to have a procedure called an endoscopic ultrasound. Even though I had my gallbladder removed three years ago, there was still a possibility that I had gallstones because surgeons only remove the gallbladder sac. They don’t remove the bile duct or the sphincter connected to the gallbladder. This was news to me! I thought once you had your gallbladder removed, that was it. No gallstones, no upper right quadrent pain related to the gallbladder, but man was I wrong. I scheduled the endoscopic ultrasound two weeks later.

During an endoscopic ultrasound, the doctor is able to take pictures of structures by inserting an endoscope (tube with camera) down the throat/esophagus to the stomach and surrounding structures. This allows the doctor to see if there are any gallstones, issues with pancreas, liver, or lymph nodes. My doctor told me after my procedure that he didn’t see any gallstones or issues with my pancreas, liver, or lymph nodes. Because of this, he was going to refer me to a more specialized gastroenterologist who is about two hours away from my home. He thought I had #SphincterOfOddiDysfunction, but didn’t feel comfortable performing the surgery because it’s not something he regularly does and it has more risks than other surgeries I’ve had.

Let me just stop right here and say I have NEVER had a doctor admit something like this to me. If doctors would admit things like this to patients, the health care system would improve.

So I went to the next specialist and had extensive bloodwork done for #Lupus, hepatitis, autoimmune disease, etc. and all of it came back normal. I am an #Alpha1AntitrypsinDeficiency carrier so they ran this test just to see what my levels were at. They were below normal (which I already knew), but they said they didn’t think it was related to what I’ve been experiencing.

When I have a flare, I have horrible upper right quadrent pain that feels exactly like my gallbladder pain did. I feel nauseous pretty much 24/7. Pretty much every time I eat, I have to run to the bathroom; it doesn’t matter what I eat. I have had high liver enzymes a few times with these flares, which is why my doctor thinks that I have #SphincterOfOddiDysfunction. I am currently taking hyoscyamine when I feel the pain increasing and that helps the pain not get unbearable. There is not a definite test for #SphincterOfOddiDysfunction, which is why my doctors wanted to rule out other things before performing surgery.

#SphincterOfOddiDysfunction occurs when the sphincter of Oddi (which is/was connected to the gallbladder) doesn’t open and close like it should to let bile pass through. The body still makes bile without a gallbladder, there’s just nowhere to store it. Because this sphincter doesn’t open and close like it should, bile isn’t able to pass through. The bile gets obstructed and is unable to flow through like it should. This causes pain and can impact the liver and pancreas. The surgery for #SphincterOfOddiDysfunction is called a sphincterotomy, which allows the surgeon to cut the sphincter open so that bile can pass through more easily. There are risks to this surgery like #pancreatitis. As of right now, there isn’t a known cause of #SphincterOfOddiDysfunction. I’ll be having this surgery at the end of September 2019.

I’ve found during my research that many doctors don’t recognize #SphincterOfOddiDysfunction as a real illness/ diagnosis. I’m one of the lucky ones who didn’t have to wait for a long period of time to be diagnosed while in debilitating pain and had doctors that listened to me. I want to bring awareness to it because there are people out there suffering who may not realize you can have the same pain after having your gallbladder removed or are trying to find a doctor that will listen to them. I think it’s considered rare because many medical professionals don’t know about it or understand it and people aren’t properly diagnosed with it.

#SphincterofOddiDysfunction #RareDisease

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Samantha Bowick

You Can't See My Chronic Pain or Illness in This Photo

Ever heard the saying, “A picture is worth a thousand words?” One picture can illicit so many different feelings for different people. People tend to judge other people by the pictures they post. Those of us living with chronic illnesses and in constant pain have been judged for having better days because people think we are supposed to be in our bed 24/7 instead of trying to enjoy life as much as we can. Looking at this picture, I’m sure you can see I’m really happy. I asked my sister to go with me to a park in our hometown to take pictures of me with my second book “Living with Alpha-1 Antitrypsin Deficiency ” at the end of August, right before it was published. I was, and still am, excited it’s been published. This book has a special place in my heart because it’s a book I was able to write with and for my mom and uncle, who both live with the genetic illness. Without reading any of my other social media posts and only looking at this picture, you probably wouldn’t know I have chronic pain every day. I was diagnosed with endometriosis in 2010 and have had six surgeries including a hysterectomy, gallbladder removal, appendix removal and tried numerous treatments to find some relief. I had excision surgery, which has provided me with the most relief as I don’t struggle with pain directly related to endometriosis . However, I also have been diagnosed with irritable bowel syndrome (IBS), polycystic ovary syndrome , osteoporosis and interstitial cystitis . At the beginning of the year, I had to have lithotripsy to bust a kidney stone and am now preparing for a surgery for sphincter of oddi dysfunction . The sphincter of oddi is connected to the gallbladder and allows bile to pass through to the intestines. When doctors remove gallbladders, they remove the sac; they don’t remove this sphincter. It is still possible to develop gallstones after having a gallbladder removed because bile is still produced and there is a small area where gallstones can form and get stuck. For whatever reason, my sphincter of oddi has decided to start spasming, and when it does, it’s very painful and causes bowel issues. It doesn’t matter what foods I eat; I experience this pain after eating most of the time. I have to be near a restroom after eating because I don’t know when I’m going to have bowel issues. When I have surgery, the sphincter of oddi will be cut so it can lie flat, bile will not get stuck and the sphincter should no longer spasm. Would you gather all of this information from one picture of me jumping up in the air and smiling? No. I was in pain in this picture, but if you weren’t around me before or after it was taken, you wouldn’t know I was in pain or how much pain. But despite the pain, it was worth it to me to jump in this picture and be excited and proud of myself for what I accomplished. It’s important we don’t judge people on the small glimpse we have into their lives from pictures. Maybe they are having a better day than they did yesterday. Maybe they are trying to ignore the pain to have the best day they possibly can. Maybe they just published a book and are so excited and want to celebrate even though they are experiencing high pain levels. Remember these things when you are scrolling through social media.

Community Voices

My mom has Alpha-1 antitrypsin deficiency and I’m a carrier. Alpha-1 antitrypsin deficiency occurs when the liver is unable to release an adequate amount of alpha-1 antitrypsin protein. It can cause shortness of breath, a large decrease in lung function in a short amount of time, chronic respiratory infections, as well as other symptoms. The only treatment specific to the alpha-1 antitrypsin protein is augmentation therapy. This will not increase the protein, but it will keep your levels around the same amount they are at when you start treatment.

When my mom was diagnosed in 2009, we didn’t know anything about this chronic illness. She was her pulmonologist’s first patient so he did research after she was diagnosed. Honestly, we didn’t know what to ask or how she would be affected.

Questions we could have asked would be: How would her quality of life be affected? Are there other treatments she could try? Are people with alpha-1 more likely to be hospitalized? Why isn’t this a test doctors perform on babies when they are born so they can start treatment and lifestyle changes as soon as possible?

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