Maggie Goodman

It started with my having to stay with my parents. I had deep vein thrombosis (DVT) in my right leg, and the hematologist wanted me on strict bed rest.  I was required to elevate my legs, and was also taking a blood thinner. If it weren’t for my 3-year-old niece, C, staying with my parents too, it would’ve been a very long weekend for me. Originally, my husband was standing up in his Navy best friend’s wedding. Since the wedding was in New York, we decided to turn it into a vacation and add on an extra few days to do some sightseeing. That ended up not being possible, my husband stated that he wasn’t going to stay in New York any longer. He was going to take the train back the following morning so he could arrive before noon to pick me up from my parents’ house and take me home. Once I settled in at my folks’ house, C and I started playing a few games and chatting with each other. Later on, I was able to go downstairs for dinner — provided I didn’t sit for more than an hour. Afterwards, everyone went into the living room to watch a movie. It was then that my niece asked me why I had large white socks on and used a cane. I told her that I have a really bad “boo-boo,” so my doctor wanted me to wear them and take medicine so I’d get better. My niece got very quiet and suddenly walked up to my leg and gave it a quick kiss. She asked if it was all better now. I explained to her that it will take time for my leg to heal, but her kiss made my heart feel better. After that, she asked my mom and sister every day if I was healed. They had to explain that I still needed to take my treatment and stay off of the leg. C was persistent because she really wanted my “boo-boo” to go away. At my last checkup, Dr. R. went over my recent Doppler results with me. She stated that my clot was finally gone, but I would have to be on the medicine for the rest of my life. I was so happy that I rushed home to call my sister. I asked to speak with C and told her the great news. I could hear my niece yell out to my sister, “See, Mommy, I told you — a kiss does make the “boo-boos” go away!”

A while back I found a treatment for my migraines that actually worked. Unfortunately, my insurance denied it stating it was “experimental.” I asked my doctor about it and he stated that it has been around for over 15 years, and he’s had excellent results with his patients. I tried to appeal, but they stood by their decision. Needless to say, I still struggle with debilitating migraine pain since I can’t take triptans or anything that contains it. Another instance of being denied coverage is when I had my “preventative care” flu shot. I went to the closest pharmacy to me to obtain it. The pharmacist told me that insurance denied payment, so I wound up paying out of pocket. I called customer service and was told that I had to go to their store for it to be covered. I explained that I live in the country and it’s over an hour to get to the closest one. She told me to “appeal” it by faxing over the receipt to the claims department. I typed up a letter and faxed it over, knowing that it would take a miracle for a reversed decision, seeing as they do not care where I live or how far I have to travel. My heart goes out to others in the same situation. It reminds me of a few articles I read the other day. There are many people on fixed incomes whose insurance has denied their lifesaving treatment. If they decide to pay for it on their own, they usually have to cut back on things like groceries, paying certain bills or even heat. The other alternative is they just don’t take it, and their health worsens. It’s not fair for these companies to force their customers into making tough choices. Some of them depend on these drugs to keep their cancer from spreading or IBD from flaring up. Also insurance companies may deny counseling for mental health patients even though it’s advertised by the company that they are supportive in helping those who have mental health issues. Why are they refusing to help? Is it false advertising? Why don’t these businesses realize that lives are at stake if they are denied the very thing that would assist sick people in feeling better? I only have one question for those “suits” who own and run these establishments. If your wife, child, mother or father became seriously ill and needed specialty medication prescribed by their doctor to keep their symptoms from worsening or trying to get in remission, would you treat them the same way as you’ve treated us?

In some families, there are parents and even siblings who continue to hurt family members mentally, emotionally, physically and verbally. These types of people never take responsibility for their actions, they gaslight others to make them question their sanity and even give the silent treatment as a means of emotional abuse as a way to hold power and control in the relationship. There is plenty of information out there that show these unhealthy bonds can create stress on the body making those they’re targeting vulnerable to chronic physical illnesses including gastrointestinal conditions and autoimmune diseases, just to name a few. I made the decision based upon my health issues (Crohn’s disease, stroke survivor, migraines) over eight years ago to go no contact with my family. I should’ve seen the signs they were toxic when I was in my teens but I wanted to be the “big sister” and form a lifelong relationship with my sister, plus seek approval from my parents by succeeding in my studies and career. Sadly, they never encouraged me even when I wasn’t well. After my ostomy surgery, my sister started to call me a drug addict because I was on Crohn’s medications and she wasn’t supportive while I was recovering. Then as I got older, it just seemed like whatever I said or did would set one of my family members off. I couldn’t even make my own decisions without being put down or criticized so I lived my life walking on eggshells until I got married.  Then I was able to be my own person and learn new endeavors with my husband’s encouragement, plus his family treated me with the love, dignity and respect I never received from my own. As time passed, my sister started causing more trouble for me and when I tried to defend myself, my parents accused me of being guilty because I was so defensive. These issues had me in tears half the time and there was no way I could please any of them. I thought things would’ve gotten better after I had my stroke but it was all an act for friends and relatives. Once I was fully recovered, they went back to their old ways and it got to the point where I couldn’t take it anymore. I finally had the courage to stand up for myself and went no contact because at my last neurologist’s appointment my blood pressure was extremely high and the RNNP could tell that I was emotionally distraught. I explained what I was dealing with and she advised me to avoid them because their toxic behavior affected my blood pressure and could have caused a second stroke. I took her advice and moved on. We shouldn’t let a sense of family keep us in a situation where it may cause undue stress to our bodies and overall well-being. If they refuse to acknowledge that their actions are hurtful, then it’s OK to walk away, never look back and focus our attention on ourselves.

Is anybody else tired of being forced into using mail order to obtain their prescriptions or going to a pharmacy that their insurance company tells them to? I recently found out that I may be forced into doing this if my husband’s company doesn’t allow its employees to “opt out” and continue to use the pharmacy of their choice in 2022. I’ve been using the same dispensary for many years and have been allowed to patronize it up until the end of 2021. My pharmacist is well-versed with my entire medical history and my husband’s. She also knows our drug allergies/interactions. Being forced to use mail order medicine is harmful. For example, there are certain medications that can’t withstand extreme temperatures, which can lessen their potency. Pills may be crushed during shipping, vials can break if not packaged carefully, another’s medication can be mistakenly sent to the wrong address, or it can be stolen from the mailbox. Also, some cancer patients are forced to wait for a month or so for their lifesaving treatment due to the mail order pharmacy choosing the cheapest and slowest method to ship. Can you say recipe for disaster? I had issues with mail order years ago. To make a long story short, customer service lied to me about never receiving the script for my Crohn’s medication. I called a second time. I was told that they shipped it out. When I called the third time, as I never received my order, they didn’t do anything for me. I went back to my old pharmacy and within 24 hours, I obtained my much needed treatment to keep my inflammatory bowel disease (IBD) remission. In order to decrease costs and gain more profit, some of the pharmacies have cut back on the number of pharmacists working for the company. They are forced to work faster filling more orders, which is unsustainable and can jeopardize the safety of patients. They are also forced to work 12-hour shifts, which is extremely busy. They don’t have time to eat lunch or use the facilities. They leave work wondering if any mistakes have been made. We need to address the CEOs of prescription insurance companies and ask them this very important question: “If you have a loved one who’s very ill, would you force their hand into using mail order like the rest of us?”

Have you ever had a best friend? You know that one person you talk to on the phone all the time and even if it’s been a few weeks you can pick up the conversation where you left off. Both of you text constantly, visit at your favorite coffee place and confide in each other. When you are sick, she calls to check in on you. If you get good news, she’s happy for you. This is my best friend. We met at an ostomy support meeting before she had surgery. She has ulcerative colitis (UC) (I like to pronounce it UCK) and was tired of being very sick every day. I introduced myself and we talked for a long time about stomas, product samples, life with the “bag” etc.  Once she fully recovered, she came back as a breath of fresh air in our organization. We’ve been close for almost 30 years. “L” has been my rock whenever I needed an ear to listen. A while back, I had serious problems with certain people in my life. She made me realize based upon her years of observations, that they were harming my health and well being. I needed to go no contact before I wound up back in the hospital with another stroke. I’m sure it was difficult for her to be upfront and honest with me, but I knew she was only looking out for my best interest. I wound up listening to her advice, and I’m better off for it. There was another time when I needed assistance in running the ostomy support group. I could no longer do it due to having a stroke. So I asked if she’d be interested and without missing a beat, she agreed. She did an amazing job for 10 years giving our chapter the PR we needed, took phone calls, talking to patients and their family members, and really went above and beyond in making new members feel like a part of  “the family.” Eventually, new and old members moved on with their lives. We decided to disband the group and looked forward to the next chapter of our “story” waiting for us. Looking back to my first surgery, I don’t regret having it. Something positive came out of it, and she’s a constant reminder of what true friendship really means. I’d like to tell her from the bottom of my heart, “thank you, thank God for you, you’re the wind beneath my wings.”—Bette Midler

Nurses are our first line of defense in the hospital. If someone has an allergic reaction to medication, has sudden pain, or has problems breathing, they are on the phone with their physician STAT.  Currently, they are forced to work with a high patient to low RN ratio as well as poor working conditions. When this happens, patients are the ones who suffer. For instance, they get infections, bedsores, are readmitted due to getting sicker, are not adequately educated on how to care for their injury/illness, and don’t get the emotional support they need either. In my case, I was fortunate enough to have excellent care from the nursing staff when I had my first ileostomy surgery due to Crohn’s. There was always time to have my questions answered, be reassured if I was upset, and they taught me how to care for my appliance. On the flip side, a few months ago I was hospitalized for cellulitis. The evening shift was cut down to three caregivers and one aide. I could overhear in the hallway how stressed and frustrated they were due to someone calling in and their aide was taken away to another floor. No extra assistance was given.  All I could do was pray that there wouldn’t be anything major occurring due to budget cuts that have been in place for a while. I’ve had many operations over the years due to Crohn’s disease causing a narrowing in my small intestines which resulted in an obstruction. The medical caregivers who oversaw me post-op always made sure I had pain medication, the call button next to me, plus they checked in regularly to see that I was resting comfortably. I read an online article today that stated a nursing union at a hospital in Upstate NY went on strike due to the need for improved working conditions. Their pleas for better patient care have been ignored for a long time by management. The CEO needs to realize that people who have serious illnesses are the ones affected by his decisions. Those who have IBD, diabetes, heart problems, cancer, etc. often choose a particular facility because they feel they’ll get the best possible care. If that gets disrupted, problems ensue ranging from mistakes, accidents, or even suing the hospital by a family due to negligence of a loved one. The RNs are fighting for proper patient management. Who’s fighting for them?

Recently, I got to thinking about people, like myself, who have a variety of unseen chronic health conditions.They can have “good” days and “bad” days with their invisible disabilities such as depression, diabetes, IBD, and cancer. It can cause a dilemma on certain days, forcing the person to cancel an outing with friends or call into work because of being sick. We may look like we’re healthy individuals in front of others. It’s not credible to them that we are fighting pain and exhaustion from our ailments every day. They often doubt the reality of what can’t be seen and assume it’s fake. If we look well enough, the severity of our symptoms comes into question, and people will say things such as: 1) “You aren’t working hard enough to get through your pain,” 2) “You’re making up your condition to get out of being responsible for your work,” or, 3) “You are to blame due to the bad choices you’ve made for yourself.” We face stigma due to not knowing what our days may entail, such as doctors’ appointments, dealing with side effects from the medications we take, and having frequent tests done to check the progression of the disease. I remember having several jobs when I was in my 20s, and I would get annual reviews that stated I was either meeting company expectations or doing excellent work. When I had surgery for my Crohn’s or being hospitalized due to a flare-up or an intestinal blockage, I’d come back to my job only to be told I hadn’t met those expectations. Another excuse was that they were doing layoffs and I was the first to go. Back then the Americans With Disabilities Act wasn’t in existence, so many businesses were able to get away with discriminating against those who had invisible conditions. Those of us with these types of disabilities share something in common. We are not defined by our diagnosis. Identity matters much more because of our uniqueness. We can take our situations and turn them into something meaningful. People need to become more aware that not all illnesses are the same. The more they educate themselves, they’ll realize that we deserve the same respect and treatment as anybody else.

As a Crohn’s patient, I’ve been dealing with extraintestinal manifestations(EIMs) for the past several years. Besides anemia, removal of a kidney stone and joint pain in my hands and feet, I’m dealing with painful lesions on my abdomen, back and face. I never really thought much of it at first. My primary care cultured one of the sores. It  tested positive for staph so I had to take antibiotics which got rid of them for a few months. They appeared again so another culture was done, and it tested positive for staph again. So a stronger dose of the antibiotic was prescribed. I hated looking at them. They itched, were sore and it seemed like every day new ones would crop up. I felt like a freak of nature, but luckily, they were covered up by my shirt so they wouldn’t show. I went to see a dermatologist to see if someone could help me get rid of these “eye sores.” A very knowledgable PA examined my skin and stated that it looked like pyoderma, she wanted Dr. M. to take a look at it and get his input. When I saw him, he was very thorough going over my medical history. He told me that he’s had success with narrowband UVB phototherapy and that I’m a strong candidate for the treatment. He went on to explain how the light therapy works. 1. The phototherapy is done twice a week, and I’m to step into the center of a containment enclosure containing fluorescent light bulbs. 2. Special googles are worn to protect my eyes, and I have to undress only those body parts that need the UVB lighting for a short time (seconds to minutes). 3. The only side effects I may encounter are A) my skin may freckle or turn slightly pink after each treatment B) if at any time I feel burning or discomfort, I’m to notify one of the staff immediately and C) results may vary in each patient and the lesions usually start to heal after five to 10 treatments. This past week, I noticed that there are newer lesions on my face and back. It saddened me knowing that having Crohn’s meant dealing with more issues than I wanted. I had tears in my eyes when I realized that there is a strong possibility it may never go away. I just wish I never had IBD and was “normal” for once. The only thing left is to keep the faith and not give up.

Dear Crohn’s disease, You have the worst reputation among 3 million Americans from all walks of life who are affected by your “rein of terror.” Many patients with inflammatory bowel disease (IBD) have to deal with nausea, fever, constipation, the big “D,” and abdominal pain. There is also inflammation involved within different parts of the GI tract as well as abscesses or fistulas, which can make a person extremely ill if it’s not taken care of. There are ways to pinpoint where you are hiding within the body. CT scans, MRIs, endoscopies, sigmoidoscopies and colonoscopies are some of the ways that you can be “tracked” down before decisions are made on how to best treat your manifestations. Most gastroenterologists will try a variety of medications to keep you from further harming our GI systems. This way you’ll never wreak havoc for a very long time. Anti-inflammatory drugs, immune suppressants, or newer advancements, known as biologics, are always considered the first line of defense.  Not everyone responds the same way to treatments since some can develop allergic reactions or are prone to getting an infection. In case you didn’t know, the CCFA (Crohn’s and Colitis Foundation of America) chapters have dedicated “warriors” whose goal is to raise awareness about inflammatory bowel disease and have fundraisers within the community so the money goes towards research to develop a permanent cure. So you see,  my fellow “crohnies” and I will not give in to you. “We are the champions, my friend, and we’ll keep on fighting…….. till the end.”