Do you have a loved one who has a chronic illness such as endometriosis, alpha-1 antitrypsin deficiency, polycystic ovary syndrome, interstitial cystitis, or chronic pain?
Here are six things I recommend for people with chronic illness if you’re looking for gift ideas:
1. Heating pad: A heating pad is essential for someone who is suffering with any chronic illness that comes with chronic pain. Maybe they have a heating pad, but it’s not getting as hot as it once did. Maybe they would benefit more from having a heating pad you heat by microwave instead of plugging into the wall because the one they currently have, they have to remember to turn it off. Maybe they would benefit from having one with a timer so that it shuts off on its own. There are many different types of heating pads available on the market.
2. Heated or soft blanket: Heated blankets are like a heating pad for our entire body. Some people with chronic illness tend to run on the cold side and may love having a heated blanket to help them stay warm. There’s no such thing as too many blankets, especially if they are soft!
3. Coloring book, puzzles, books to read: These are activities we can do while lying in the bed. They don’t require physical exertion, which we tend to limit when we are in a lot of pain. These activities will help keep our mind occupied for a little while.
4. Bubble bath: Warm/hot baths can help us relax and what better way to do that than with some awesome bubble bath. Some fragrances can be soothing and promote relaxation. Our bodies are under a lot of stress and having some time to relax can be very beneficial to our overall well being. Please be careful of certain scents with loved ones who have respiratory illnesses or allergies.
5. Weekly medication dispenser (if they take several medications or supplements every day): It can be difficult for us to remember to take our medication every day. This is where a weekly medication dispenser comes in handy. We can put all of our daily medications in for the entire week and leave the dispenser somewhere that will remind us to take it every day.
6. Soft, loose fitting clothing (robe, socks, t-shirts, pajamas, etc.): There have been many days I haven’t put on jeans because they are tight and I didn’t want anything tight around my stomach due to the pain I was experiencing. Yoga pants, pajama pants, and t-shirts are what I live in most of the time.
I hope you find this gift guide helpful for your loved ones with chronic illness.
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Alpha-1 Antitrypsin Deficiency occurs when the liver doesn't release an adequate amount of the alpha-1 antitrypsin protein into the bloodstream. This can affect the lungs and liver of patients with this illness. Symptoms include shortness of breath, chronic respiratory infections, chronic cough with or without phlegm, as well as others. The treatment for alpha-1 is augmentation therapy, which is the alpha-1 antitrypsin protein given intravenously every week. Inhalers, nebulizers, and supplemental oxygen can help with shortness of breath. About 100,000 people have been diagnosed, but more people are believed to have alpha-1. The blood test is simple and free if you would like to be tested.
So why do I advocate for alpha-1 antitrypsin deficiency? When I was in high school about 10 years ago, my mom had lost a lot of lung function in a short amount of time. She had already been diagnosed with chronic obstructive pulmonary disease (COPD) and emphysema, but she was still declining more rapidly than expected. Her pulmonologist decided to test her for alpha-1 at the beginning of my senior year in high school and the test showed she has alpha-1 antitrypsin deficiency. She started on augmenation therapy and has been receiving it every week for the last ten years. She has also been prescribed supplemental oxygen along with her inhalers and nebulizers.
Since then, my dad, my sister, two of my uncles, cousin, and I have been tested. My mom and her youngest brother were diagnosed with alpha-1, my dad, my mom's oldest brother, and my cousin don't have either deficient gene. My sister and I are MZ carriers as we received an M from my dad and a Z from my mom.
In January 2018, my uncle (my mom's youngest brother) passed away with what we think were flu and alpha-1 antitrypsin deficiency complications. Three days after he passed away, my mom's heart rate was elevated and my dad called an ambulance for her. While at the emergency room, she was diagnosed with the flu and told to go home with Tamiflu. My family wasn't having it. We had just lost my uncle and were terrified we were going to lose my mom, too. My mom, my sister, and I were in the room with the doctor and asked him if he knew what alpha-1 antitrypsin deficiency is when he told us he was discharging her. He said "It's like diabetes" and shut the curtain really fast. I went outside and called my dad and my sister went to the nurse's desk immediately. My dad called my mom's doctor office and the answering service told him they had to go by what the emergency room doctor said. The nurse told my sister that they have had a lot of complaints about this doctor. We told the nurse why we felt like my mom needed to be admitted, but there was nothing she could do. We had no choice but to take my mom home. It was the weekend so we had to wait until Monday to be able to see my mom's pulmonologist.
This is not okay. The emergency room doctor could have called my mom's pulmonologist and explained what was going on and asked for his opinion. Instead, the emergency room doctor let ego get in the way and sent my mom home when she shouldn't have been. When we saw my mom's pulmonologist he said you lived through the flu and that he had several patients with respiratory complications pass away from the flu. He was not happy with our experience at the emergency room and filed a complaint about that doctor as he's on hospital board.
I advocate for alpha-1 antitrypsin deficiency for my mom and uncle. I advocate to spread more education, awareness, and support to those who are suffering with it. Our experience should never have happened. The medical community needs to be more educated about illnesses like alpha-1 antitrypsin deficiency.
You can find out more in my book Living with Alpha-1 Antitrypsin Deficiency: The Complete Guide to Risk Factors, Symptoms, and Treatment Options, which details my family's experience with the illness as well as medical information and has a Foreword from our pulmonologist, Dr. Nicholas Sanito.
Chronic illnesses like alpha-1 antitrypsin deficiency can take a lot of energy out of those who are suffering and it can be tough to find a balance and not overdo it. Alpha-1 antitrypsin deficiency occurs when the liver doesn't release enough alpha-1 antitrypsin into the blood, which is a protein that helps with lung function and can also impact the liver. It is a genetic condition meaning those who have alpha-1 antitrypsin deficiency and are carriers are born with these genes. There is no cure or anything that can be done to change these genes. If you have this illness, it's not your fault.
Patients who have alpha-1 antitrypsin deficiency may experience lower oxygen saturation levels and require supplemental oxygen along with augmentation therapy as well as inhalers for shortness of breath and other symptoms. This can interfere with all aspects of life from working, daily life, finances, mental health, and so much more. However, there are some lifestyle changes that those suffering with alpha-1 antitrypsin deficiency can make to try to help combat some of their symptoms.
These lifestyle changes include:
If you think you may have alpha-1, ask your doctor today how you can be tested. It's a simple blood test that is free and will allow you to know your alpha-1 antitrypsin protein level and your phenotype (ZZ, MZ, MM, etc.).
I hope you find this information helpful.
To learn more about alpha-1 antitrypsin deficiency, check out Samantha's book Living with Alpha-1 Antitrypsin Deficiency, which is published by Hatherleigh Press and distributed by Penguin Random House.
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Working with a chronic illness is difficult to say the least. Even though we are in pain, feel fatigued, juggling doctor appointments, etc. we still may have to work. We still have bills to pay and most likely have a pile of medical bills we have to pay. We want to work. We don't want handouts. Life doesn't stop when someone has a chronic illness. We may have to put our dreams and careers on hold because of our chronic illness. If this is you, know that you are more than your illness. You are more than your job. You are more than what you are physically able to do.
It's important that we find a job we can do physically so that we don't further exacerbate the symptoms we are experiencing. With endometriosis, if I worked for eight hours a day standing on my feet, my pelvic pain intensified and worsened. I was exhausted, fatigued, had nausea and headaches. This is why I haven't been able to work full time in the last five or more years as a pharmacist or pharmacy technician. I haven't had a job more than a couple of months since 2013 because of my health.
I am now working in a local restaurant office for about five hours a day Monday through Friday. I'm able to sit most of the day verses standing on my feet. I haven't been experiencing pelvic pain and I attribute that to not standing while I work. I thought after withdrawing from pharmacy school that I would never find something else that I would like, but I have. I'm a nerd and enjoy numbers, spreadsheets, and working on computers. I took Accounting classes in high school and college, but never really considered doing anything with it until this opportunity came up, which I'm thankful for.
It's important that we put our health first even while working. It should be okay to ask for accommodations. If you feel like you're having to jeopardize your health for you job, it's okay to speak up for yourself and even quit if that's what you need to do. It has been hard to recognize where my health is and to quit school and work when I needed to. It's hard speaking up for myself, but if I don't, people won't know what I'm going through or help if they can or are willing to.
If you're not able to work, that's okay, too. You are more important than a paycheck. It's okay to apply for disability and ask for help. Know that you are not alone.
Here are five tips that I think are important:
I hope you find this helpful.
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November is Alpha-1 Antitrypsin Deficiency Awareness Month and is being recognized by the Alpha-1 Foundation, in the state of South Carolina, as well as other states by their governors.
Why is Alpha-1 Antitrypsin Deficiency Awareness Month so Important?
Alpha-1 antitrypsin deficiency is an illness that at least 100,000 Americans have been diagnosed with it. There could be more people suffering with it that aren’t aware they are or what it is. It occurs when the liver doesn’t release enough alpha-1 antitrypsin protein, which helps the lungs function properly. With low levels of the protein, lung illnesses and liver disease are more likely to occur. Alpha-1 antitrypsin deficiency is a disability as it can affect oxygen saturation levels and the respiratory system.
Symptoms that can be present with alpha-1 antitrypsin include shortness of breath, chronic respiratory infections with or without mucous, low oxygen saturation levels, a large decrease in lung function in a small amount of time, as well as others.
Illnesses that can accompany alpha-1 or be diagnosed instead of alpha-1 include: chronic obstructive pulmonary disease, emphysema, asthma, as well as others. Those who smoke are more likely to show signs of alpha-1 than those who don’t smoke with the illness.
It is a genetic disease meaning that it runs in families. However, just because one sibling has it, doesn’t mean all siblings will have alpha-1.
Augmentation therapy given by infusion is the treatment for alpha-1; there is no cure. Inhalers, nebulizers, and supplemental oxygen can be prescribed to help combat symptoms like shortness of breath.
Here are five reasons Alpha-1 Antitrypsin Deficiency Month is so important:
1. Alpha-1 Antitrypsin Deficiency Awareness Month (November) can bring all of us together who suffer with alpha-1, which oftentimes leaves us isolated because it’s so rarely diagnosed and we don’t know anyone else with it.
2. We are louder in numbers. The more people we have talking about alpha-1, the better.
3. We can reach people who don’t know what alpha-1 antitrypsin deficiency is and make sure they receive the correct information, especially if they think they may have it.
4. We want the medical community to know we aren’t backing down!
5. We can let people know they aren’t alone in their symptoms.
Alpha-1 antitrypsin deficiency awareness is extremely important no matter what day or month of the year it is. When we ban together, we are more likely to be heard. I encourage you to talk to others and tell your story. Maybe it will lead to someone being diagnosed who otherwise wouldn’t have been and would have been suffering and not known why.
Relationships are difficult and adding a chronic illness into the mix makes them more difficult. Relationships are all different. We have relationships with our parents, siblings, family, spouse, boyfriend/girlfriend, friends, coworkers, and other people in our lives. It can be a task to balance all of these types of relationships along with making our health a priority.
Chronic illness makes dating hard. We have to figure out when it's okay for us to disclose our illness, symptoms, etc. that we are going through. We don't want to scare off the person we are dating, but we also don't want to leave them in the dark. Their support could be beneficial depending on how they handle finding out about our illness.
We need people in our lives that aren't going to judge us for our health issues; who are going to be okay when we have to cancel plans because we aren't feeling well; who aren't going to push us away because we have to put our health first; who aren't going to tell us that we are too much to deal with because of what we are going through with our physical, mental, and emotional health.
Here are some things that I've learned and feel called to share regarding relationships that I've had/have now in hopes that it will help you navigate your relationships:
I hope you find this information helpful.
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It can be difficult to manage our day with chronic illness. It's important that we find ways that work for us that allow us to function as best as we can while managing our symptoms and resting when we need to.
Some days we make plans and we may have to cancel them and that's okay. We have to be okay with that no matter what others may say or think of us. It's our lives and we have to do the best thing for us and our health. We have to constantly think about our health. Although it may not be fair, it's our reality.
Some days we may feel better than others and that's something we have to accept. Our symptoms may come out of nowhere or may linger around for weeks, months, or even years depending on the illness. We have to push ourselves as well as know when to pull back. It can be difficult to balance.
Here are some things that I do to try to manage my day with chronic illness as much as possible:
There are some responsibilities that we have to do like take care of family, work, doctor appointments, take medications, etc., but it's still possible to manage your day with a chronic illness. Please know that it's okay to say no to people and cancel plans when you need to.
I hope you find this information helpful.
Do you have things that help you manage your day with chronic illness? Let us know by leaving a comment below!
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Researching is extremely important when you have a chronic illness. Unfortunately, we can't only rely on what our doctors tell us about our illness, prescriptions we should take, treatment options we should try, etc.
It's important that we do our own research and be our own advocate. It's exhausting and oftentimes a full time job making sure we go to the doctors we need to go to, getting diagnosed, and finding a doctor who agrees with the treatment options we want to try.
It's crucial to do research outside of one website, book, etc. The more research you do, the better. The information from multiple sources should match up. If you talk to your doctor about the research you find and they don't seem knowledgeable or agree with what you have found, find another doctor.
Wikipedia and Google are not reliable sources. I have also found the Mayo Clinic to not have accurate information about some illnesses. One place to start your research is with nonprofits for your illness. For example, trusted nonprofits for endometriosis would be the Endometriosis Research Center, Endometriosis Network of Canada, the Endometriosis Foundation of Houston, EndoWhat?, and for alpha-1 antitrypsin deficiency, it would be the Alpha-1 Foundation.
Another research avenue is to go to a specialist's website; for example the Center for Endometriosis Care as they specialize in endometriosis or pulmonologists who specialize in alpha-1 antitrypsin deficiency. Gynecologists are not knowledgeable about endometriosis and shouldn't be trusted to give you reliable information. Many doctors are not knowledgeable about alpha-1 antitrypsin deficiency so it's important to get information from a specialist.
Reading about what others have been through with the disease you have can be helpful, too. Oftentimes, patients who are well seasoned with their illness can be more knowledgeable than some doctors. Support groups for your illness may have reliable information as well.
The more research you do the better. Don't agree with any treatment you aren't 100% on board with and don't agree with a treatment you haven't researched. It's your body and you have to live with your decision for the rest of your life, your doctor doesn't and drug companies don't.
Back in 2011 when I first tried Lupron, I didn't do my own research and wish I had. I now have osteoporosis and I'm sure it's from the injection even though no doctor will admit that. I'm 28 years old and have the bones of a 60+ year old. Had I done research, I wouldn't have agreed to have it injected into my body. I trusted what my doctor told me and only went by that. This is why I am so adamant about everyone researching their chronic illness, treatment options, talking with others who have tried different treatments, etc.
I hope you find this information helpful.
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Not having these body parts (uterus, ovaries, and cervix) doesn't make you less of a woman. Being unable to bear children doesn't make you less of a woman. I know how hard it is to feel and realize this because I went through all of these feelings when I had my hysterectomy. It seemed like everyone was pregnant or already had kids and I was in my own little world of never being able to have children. People would say that I could adopt. Although well meaning, I still needed to process all of my feelings to be able to deal with not being able to ever become pregnant. It was a loss and something I had to grieve and still grieve. We may overhear someone talking in a store about something to do with children that may make us upset. Know that it's okay to grieve this loss at any point in your life. Grieving is a necessary part of life and isn't a straight line and your feelings are valid. People don't know what to say when something like this happens and I had to keep that in mind, too. I didn't and still don't want people to tip toe around me having a hysterectomy. It was hard, really hard and when I look back to the year 2014 when I had my hysterectomy, it was the darkest part of my life as I went through all of my feelings. I'm thankful for my family and friends who helped me deal with these feelings.
Here are things that I have done/do to help me cope with my feelings:
Here is a journal entry from 2015:
"I had to make the decision to have a hysterectomy for my own health and safety, but that did not make it any easier to deal with. I knew my chances of having kids was slim before my surgery, but now I will never know if I could have had children since I never tried. I felt like I had to make a choice between having kids or going to pharmacy school and I chose pharmacy school, but still could not finish pharmacy school even though I could not have kids now."
Here is a journal entry from the end of 2015
"Having to choose to have a hysterectomy at the young age of 23 is depressing enough, but having to explain this every time I go to a new doctor is a horrible experience each time. I have had nurses tell me that I am too young to be going through this. I do not need this constant reminder that I will never be able to get pregnant and will be missing out on that experience."
I still have to remind nurses at my current doctor that I've had a hysterectomy when they ask when my last period was. Can't they read my chart and see I've had a hysterectomy without asking every time?
I always wanted to have children and it’s something that I still struggle with, but I keep in my mind that there’s another purpose for me and practice these coping mechanisms when I see that I need them.
Five years later, I'm in a better place than I was when I first had my hysterectomy. I know it's what my body needed (everyone is different). I go to baby showers. I'm there when children are born, and I babysit. I can still be happy for someone else and sad for me at the same time. Growing up, everyone always told me that I would make a great mom because of how I am with children. I have been around children all of my life because one of my grandmother's was a full time babysitter and I became an aunt at 8 years old. I get on the child's level and play with them. Even now people tell me that (they may not know that I can't have children) and I don't let it bother me because one day I may be able to adopt and be a mother.
Is there something you do to cope that I didn't mention? Leave a comment below and let us know.
I hope you find this information helpful. Know you are not alone. Sending you hugs and love.
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Confidence is believing in yourself whether it's your health, your job/career, your ability to provide for yourself and your family. It's appreciating yourself and knowing you are right where you are supposed to be. Confidence doesn't equal having a huge ego. Being confident is a positive emotion.
Confidence is something that I struggle to have every day because I don't feel confident with my health and honestly don't know if I ever will. Confidence is something I had while dancing and in course work through high school. Having to quit jobs because I couldn't juggle it all while in so much pain and having some new health issue start up every time I get a job makes it hard to feel confident in my health. Having to cancel plans over and over decreases my confidence a little each time. Will I ever be able to keep every single plan I make with family, friends, and in business and not have to cancel because of my health?
It's hard to have confidence. It's hard to let yourself feel confident when you feel like your body is constantly letting you down or you feel like you are letting others down. Know that the only person's feelings you are responsible for are your own. You can't control how others feel or respond when you cancel. You know you are canceling because you don't feel well even if they don't believe you and that has to be good enough.
We deserve to be confident just as much as a healthy person. We are all equal and have to view ourselves this way to have confidence in ourselves. We can't see someone as being better than us because that diminishes our confidence. We all have strengths and weakness, but they are different and that's what makes us unique. It's important that we surround ourselves with others that bring positivity into our lives and help boost our confidence.
Self-care plays into confidence, too. Music helps me get pumped about something I'm working on (I'm listening to 90's Pop on Pandora right now!). Reading and writing help me deal with how I'm feeling and in that I get to help others, which also helps with my confidence. Some people find that makeup makes them more confident. The way you dress can help boost our confidence levels, too. I find myself changing out of my T-shirts into a more dressy shirt even if I'm running errands to help me feel better about myself and my body. It's important that you find things that make you confident, too.
I do have confidence in sharing my story, helping others, and know I'm right where I'm supposed to be to help people who are going through a similar journey. Know that you are not alone.
How do you deal with confidence? What do you do for self-care? Leave a comment below!
I hope you find this blog helpful in some way.
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Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.