How To Combat The "Why Me's"

If you have a chronic illness or suffer from chronic pain, you have no doubt asked yourself “why me?” at least once…or more likely, a hundred times. I know I have. This question usually comes when you are not feeling well, when things aren’t going as you planned, or when you are in pain. It is something that is hard to move past. It can be frustrating and all-consuming at times. It can be depressing and can provoke anxiety. Here are a few tips that I hope will help.

1. Learn to accept that you may never get an answer. For the majority of us, there is no answer to “why me?”. Unfortunately sometimes things just happen. Acceptance doesn’t necessarily mean “it’s okay”. I’m not asking you to say that it is okay that you have an illness or pain. When I talk about acceptance, I mean being able to make necessary adjustments in your life, learning your new normal, and learning that despite your chronic illness or pain you can still be happy. Learning to accept that you may never get an answer to why this happened to you will be a process. It is not something that will happen overnight. You may want to resist it and that’s alright. It is not fair that this happened to you but with some hard work, dedication and a little reorganization of priorities, it is possible to be happy and to accept not having an answer to “why me?”

2. Find meaning. Ask yourself what good could come out of your situation. I guarantee that if you are open to that question, if you take the time to think about it, and if you are honest with yourself, you will likely come up with at least one positive thing that has come out of all the bad. For me, the meaning in my situation is that I am able to counsel others with chronic illness and chronic pain. It is what I love to do and I have been able to take my own experiences and knowledge and help others. For you it doesn’t have to be something as big as a career decision. It may be something as simple as the fact that you now have more compassion for others, you don’t judge people as quickly as you used to, or that your illness or pain has taught you to appreciate the small things in life.

3. Find a passion for something. Try to focus your attention on something other than “why me?”. Find a hobby or a passion that will make you happy and take your mind off of “why me?”. It is okay if the question comes into your mind once in a while. When it is constant or interrupts your quality of life, your focus, or your happiness, that is a problem. Finding something that brings you joy will help you to cope.

4. Find support. You are not alone. As I stated above, the majority of us with a chronic illness or chronic pain have asked ourselves “why me?”. If you find that you are having difficulty with this question, find support, either with friends, family, a support group, or a therapist. Talking about what you are thinking and feeling can help greatly.

My Invisible Illness is Real

Most people who have an invisible illness (a chronic medical condition that shows no outward signs) have experienced these words at one point and time: "But you don't look sick." These words can be extremely frustrating. I often ask my clients, "What is the most difficult thing for you about having (Crohn's Disease, ulcerative colitis, IBS…)?" I can't tell you how many times I have heard the answers "It's hard to talk to people about what I'm going through because they tell me I don't look sick", or "My family doesn't always believe how bad I feel because I don't look sick", or "I've been told it's all in my head". I could go on. This is one of the difficulties those of us with chronic illnesses need to learn to overcome. The idea that people don't believe us because they cannot see our illness like they can see someone in a wheelchair or a like they can hear a chronic cough can feel isolating and depressing. Sometimes it can make us feel like maybe it really is in our heads. Maybe we aren't really as sick as we think. Instead of giving in to this, we need to fight back! Understand that these people aren't saying these things to be insensitive. They just don't get it. So educate them! Explaining to them what you are going through and why you don't look sick will not only educate them on something they are unfamiliar with, it can be empowering for you too. Also, trust yourself. You know how you feel. You know your illness. You know that it is not in your head. It is real.

The Importance of Choosing the Right Doctor

I have been thinking about this topic for quite some time. Not only have I recently had clients question their choice in doctors, I have been thinking about how lucky I am to have the team of doctors I do. I quite literally owe my life to my colorectal surgeon and his team as well as my gastroenterologist. I have complete trust in them and know they have my best interest at heart. That is very comforting.

When you are living with a chronic illness or chronic pain, choosing the right doctor can make all the difference in your treatment. So, with all of the doctors out there, how can you be sure you have chosen the right one for you? Here are some tips:

Do your homework: If you are searching for a doctor, make sure you do your research! Check out healthgrades.com, vitals.com, and other sites where patients can post reviews. Also, don't be afraid to make an appointment to interview potential new doctors. Ask the doctor any and all questions you need answers to in order to make a decision about who would be the best fit for you. If they value you as a potential new patient, they will take the five or ten minutes necessary to answer your questions.

Choose a doctor who specializes in your condition: If you have gastrointestinal issues, choose a gastroenterologist. If you have chronic pain, choose a doctor who specializes in pain management. You get the idea. I cannot express how important it is to have a doctor who specializes in the specific illness you are struggling with. General practitioners can be great for common colds, flu's and that sort of thing, but when you are dealing with something specific, such as Crohn's Disease, arthritis, chronic pain, etc. you need a doctor who knows everything possible about your condition.

Trust your instincts: If you have been seeing a doctor you are not happy or comfortable with, find another doctor! I know this sounds like common sense but I can't tell you how many clients I have seen who have stayed with a doctor they are unhappy with. To some degree I understand. Doctors are seen as authority figures so sometimes we question our own instincts when we feel uncomfortable with a doctor. We think it must be something within ourselves, not something with the doctor. Please know that if you feel that something isn't right or you are not getting the treatment you deserve or need, you are probably correct. Trust your instincts. Your health and happiness are on the line.

If you aren't sure, get a second opinion: If you have received a diagnosis you are unsure of or your doctor is recommending a procedure or surgery you are not sure you need, get a second opinion. The worst that is going to happen is that the second doctor will agree with your doctor. At least you will then have the peace of mind you need to move forward.

Ask your peers: If you are looking for a doctor, don't hesitate to ask people you know for a recommendation. You can also research Facebook groups or other online forums dedicated to people with your illness and ask individuals there for recommendations. Hearing the good, the bad, and the ugly from actual patients can be the best way to find a new doctor.

Raising Awareness About Lupus

Recently I was contacted by a representative of Healthline, a fantastic medical website which offers information and resources on just about any illness or medical issue you can think of. I highly recommend you check it out. The reason I was contacted was because their goal this year is to raise awareness about Lupus, a chronic autoimmune disease that can affect any part of a person's body. The representative who contacted me was hoping I would help them raise awareness. Of course, I jumped at the chance. First of all, it is my goal to raise as much awareness about chronic illness and chronic pain as possible. Second of all, I have been dealing with chronic illnesses since I was 18 months old and I know how empowering education and resources can be.

When I was 18 months old, I was diagnosed with Juvenile Rheumatoid Arthritis. It went into remission when I was six years old and came back when I was fifteen. At that time it was difficult to control my symptoms, so my rheumatologist wanted to test me for Lupus. I remember being so afraid of that word and what it meant. I didn't have a great understanding of what Lupus was. All I knew was what I had seen from a woman on T.V. who had Lupus. She said that she was extremely tired all of the time and that she was in a lot of pain. At the time, there was not a lot of information available about Lupus. I wish I had a resource like Healthline. It would have made that possible diagnosis a little less scary. If you or someone you know has Lupus, or you think you may have Lupus, please check out this link:

http://www.healthline.com/health/lupus/effects-on-body

It is a virtual guide of the symptoms of Lupus and how it affects the body. It's a great resource.

10 Ways to Manage Stress with a Chronic Illness

1. Relaxation techniques – Relaxation techniques are very helpful for relaxing your mind and body. The simplest relaxation technique is deep breathing. To do this, sit in a chair or on a couch with your feet planted on the floor. Close your eyes if you would like. Begin by taking a deep breath to the count of 3 or 4, inhaling through your nose. Pause for a second and then exhale through your mouth to the count of four. While you are breathing in and out, focus on your breath and on counting. Repeat this until you feel relaxed.

2. Evaluate your priorities – We tend to have a lot going on in our lives with work, school, relationships, kids, etc. A lot of the time, our health tends to take a backseat to these other priorities. When you have a chronic illness, it is really important to make your health a top priority. Sometimes it takes evaluating the priorities in your life and figuring out how you can rearrange things, where you can ask for help, and what you can hold off on in order to make sure you are taking care of your health.

3. Participate in at least two enjoyable activities per week – It’s really easy to start feeling depressed and anxious when you have a chronic illness. To help avoid this it is important to do things you enjoy. Make it a goal to do two things you enjoy per week. That can be anything, ranging from reading a good book to taking a walk on the beach.

4. Make lists – Make a list of the things you absolutely have to do on a certain day and a list of the things you would like to do but don’t necessarily have to do. Focus on doing the things you have to do. If there is time and you have the energy, then you can start on the list of things you would like to do.

5. Enjoy the days when you feel good – Whether there are many of these days or they are far and few between, enjoy the days when you feel good and be grateful for them. It’s really easy to focus on the negative things about having a chronic illness. Instead of doing that, focus on what you can do when you feel good.

6. Be proactive with your medical treatment – Make sure you stay on top of doctor appointments and medications. That way you won’t fall behind, which will only make you more stressed out. Plan appointments far ahead of time so that you make sure to get a day and time that is convenient for you. Order prescriptions early so you aren’t rushing to the pharmacy the day you run out of medication. Make sure to report new symptoms to your doctor as soon as possible so that something can be done about it. You see where I am going with this…

7. Find social support – Whether it be with family or friends, or a support group for people with chronic illness, having support is extremely important for managing stress.

8. Exercise – Do what you can when it comes to exercise. Swimming, yoga, or even taking a short walk can do a lot for stress management. If you are having a difficult time thinking of exercises you can do, talk to your doctor and brainstorm together.

9. Make time for yourself – With everything going on in our daily lives, it is important to schedule in some “me” time. Even if it’s only a short amount of time per day.

10. Try not to put so much focus on the things that are out of your control – We only have control over so much. We do not have control over the fact that we have a chronic illness. But we do have control over what we are going to do about it. We can choose to let it affect us negatively every day, or we can choose to learn to make alterations and accept it. We can choose whether or not we are going to be on top of our medical treatment so we can get our illness under control as much as possible. We can choose to focus on the negative things about our illness, or we can choose to try and find a positive. We can let our illness become who we are or we can choose to let it be something we have.

Accepting Your Chronic Illness

ac•cep•tance:

1. The act of enduring without protest or reaction.
2. The act of recognizing as true.

One of the hardest things to do when you have a chronic illness is to accept your situation. It is something that usually takes time and a lot of hard work to achieve. Why is it so hard to accept having a chronic illness? There are many reasons. Having a chronic illness may mean a complete change in lifestyle. It may mean taking several medications daily. It may mean the inability to do things you once enjoyed. Having a chronic illness may mean not knowing when you are going to feel good and when you are going to feel bad. There are a lot of unanswered questions that come along with having a chronic illness: “Why me?”, “What did I do to deserve this?”, “What is in store for my future?”.

When I talk about acceptance with my clients, I don’t mean that it is okay that you have a chronic illness. What I mean by “acceptance” is recognizing that your situation is long-lasting and making alterations in your life that will enable you to live the happiest, fullest life possible. You can’t avoid your illness but you can learn to live with it without struggling. It also means the ability not to let your illness define who you are. Your illness is something you have, it is not who you are.

So, how do you begin the process of accepting your chronic illness? Step one is acknowledging the fact that you may never get the answers to all of your questions. You may never find out why this happened to you or if there was something you could have done to prevent it. Sometimes it just is. Asking why can leave you feeling helpless. Step two is making alterations in your life. For example, if exercise is something you really enjoyed before you got diagnosed and you are now unable to exercise to the extent you could before, think of ways in which you are still able to exercise. Maybe yoga would be a better option, or if running is too strenuous now, take long walks instead. The third step of moving toward acceptance is to find meaning in your situation. You may never find the answer to why this happened to you. Instead of focusing on that aspect of your illness or on the negative parts of your illness, find a sense of meaning in your situation. Maybe that means leading a support group for others who have the same diagnosis as you do, or volunteering at a hospital, or maybe you have decided that you want to become a doctor because of your experiences. Whatever that meaning is for you, it is important to find something positive to focus on. Lastly, make it a goal to participate in at least one enjoyable activity per week. Having a chronic illness can be life changing. In order to avoid depression and in order to learn to live with your illness, it is important to continue to do activities you enjoy. Maintaining a sense of normalcy in as many areas as you can while making alterations in those areas that are necessary will help you to feel more in control of your life.

Remember, having a chronic illness does not have to be solely a negative experience. Along with the negative feelings and experiences derived from triumphant feelings and strength that come with overcoming obstacles. With each success comes the confidence that you're able to live a full, rewarding life and maybe even a more meaningful life than if you hadn't been diagnosed with your illness.

J-Pouch Surgery and Getting Pregnant

When I was told I would only have an 80-85% chance of conceiving on my own after the J-pouch surgeries, I was devastated. I cried for three days. My husband and I had only been married for six months and we both wanted children. I couldn’t believe this was happening to me and questioned what I had done to deserve this.

It took me the three days of crying to come to terms with the fact that I didn’t have any other choice. I was so sick that it was either I had these surgeries or I died. I had to realize that whatever was in store for me I could handle. Whether or not I could conceive on my own or through in vitro fertilization, I was going to have a child. The most important thing was to get healthy first.

I think that for most women facing this surgery, the idea that they may not be able to have children without help is one of the most difficult parts. Also, the decision of whether or not to try to get pregnant with the ostomy before the final take down surgery is a big one as well.

It is important to go into this situation as informed as you can. Know your options. Talk to other women who have tried getting pregnant after the surgeries and find out what their experience was. Talk to your partner about what you will do if you are not able to get pregnant on your own so you are prepared. As scary as the statistics are, it doesn’t mean it’s not possible. Our bodies are made to bounce back. It is important to remain positive and remain hopeful.

Just to prove that it is possible, here is a picture of my beautiful 16 week old baby boy.

Giving Thanks

Since it’s that time of year I thought I should write about thankfulness. When you have a chronic illness, sometimes it’s hard to see past the negatives and really take a look at what there is in your life to be thankful for. For me, when I was really sick with ulcerative colitis, it was hard for me to think of anything to be thankful for. I just couldn’t understand why this was happening to me and I began to look at life through a negative lens. I was so sick, I had to put my life on hold to have major surgeries, I had to wear an ostomy bag, I was in terrible pain, I had complications from the surgeries…nothing seemed to be going right. Now that I am healthy again, I look back on my whole experience and realize that I had, and still have, a whole lot to be thankful for. I have an amazing husband, family, and friends who were there for me throughout everything and I have fantastic doctors who gave me my life back.

Although my experience was a rough one, I remember during one of my many hospital visits I was staying on the cancer floor. Every day I could hear the patient across from me coughing and vomiting because of the chemotherapy. This went on pretty much nonstop. I remember thinking that as bad as my experience was it could be worse and that there were people who had it much harder than I did. It put things in perspective.

Having a chronic illness can be an eye-opening experience if you let it. It can make you more empathetic to others who have an illness. It can teach you to appreciate what you have, even the little things, like going outside for a walk, eating a good meal, or spending a night out with friends. It can help you to realize that you are strong and can deal with anything. It helps you to focus on the things in your life that really matter. So, I urge you to try and think about the things in your life that you are grateful for, despite your chronic illness and despite how hard it can be sometimes.

Tips for Caregivers

Being a caregiver to someone who has a chronic illness can be a difficult role. You want more than anything for your loved one to be healthy again but there is nothing you can do to make that happen. You may feel helpless and frustrated and unsure of what you can do to help your loved one. Here are a few “do’s” and “do not’s”:

1. DO listen – Sometimes your loved one just needs you to listen without offering advice or telling them what you think they should or should not be doing. Having a chronic illness can be frustrating and sometimes they will need to just vent. If there is something they are or are not doing that is concerning you, think about talking to their doctor about it to see what they think. If the doctor agrees with you, have the doctor talk to your loved one about it. As unfair as it may seem medical advice will mean more coming from their doctor than coming from you. They need you to act as their support system, not as their doctor.
2. DO NOT neglect your needs – Acting as a caregiver to someone who is chronically ill can be all consuming at times. Even if your loved one is feeling better at the moment, you may still be thinking about their illness. I can’t express how important it is for caregivers to take care of themselves. You cannot be helpful to your loved one if you are stressed out, tired, overwhelmed, or upset. Believe me, your loved one would rather you take a break in order to do what you need to do for yourself, whether it be going to the gym or spending an evening with friends, if it is going to help you to take better care of them.
3. DO ask what they need – Sometimes it’s hard to tell what other people need unless you ask. One day they may need something completely different than the next. It is best to talk with your loved one about what their needs are so you are not in the dark.
4. DO educate yourself about their illness – It is really important for you, as well as your loved one, to be educated about their illness. That way, if they are not feeling up to it you can be their advocate. Read books or articles about their illness, talk to others who suffer from the same illness or ask their doctor questions.
5. DO NOT constantly ask how they are doing – Every day is a reminder to your loved one that they are sick. People who have a chronic illness usually do whatever they can to make themselves feel more “normal”, whether it be doing as much as they can when they feel well or just trying not to think about it when they don’t feel so well. By constantly asking how they are doing, you are just giving them another reminder that they are sick. I know this can be difficult for a caregiver because all you want is to hear your loved one say they feel okay. One thing you can do is have a conversation with your loved one about how many times per day, per week, per month it is okay for you to ask them how they are doing. Everyone’s different. Some may not mind it so much. For me, I absolutely hated it when people were constantly asking me how I was doing.

Is there anything else you can think of that should be on the "do" and "do not" list?

Depression and Inflammatory Bowel Disease

Understandably, any chronic illness can trigger depression. Nobody wants to deal with the pain, the medications, the doctor visits and/or hospital stays, the everyday struggles, or the uncertainty of what comes next. Having a chronic illness can take a toll on a person both physically and mentally.

When it comes to Inflammatory Bowel Disease, there is an increased risk of anxiety disorders and depression in people who have IBD compared to those who don’t. Now this makes sense right? There is the anxiety of having to know where a bathroom is at all times or when the next flare is going to kick in. In terms of depression, there is so much to deal with when it comes to IBD in your personal and professional life that sometimes it just becomes too much. So what can you do if you have IBD and are feeling depressed?

1. Seek professional help – I know this is something that a lot of people don’t feel comfortable doing, but it really can help. Currently, I counsel people who have a range of digestive disorders and a lot of them tell me that just venting to someone who understands what they are going through helps them to feel better. Seeing a therapist doesn’t mean that you will automatically be put on more medication to treat your depression. Most of the time, talking about your depression with your therapist and jointly coming up with strategies to help you feel better is enough.
2. Join a support group, either in person or online – As I mentioned above, talking with others going through similar situations as you can be a life saver. It really helps to know you are not alone.
3. Get out of the house – Sitting at home thinking about your illness is not going to help you to feel better. Getting out of the house, even if only for a short period of time each day will help to distract you from your sadness. Take up a hobby, something that makes you happy, to keep you distracted.
4. Surround yourself with loved ones – Being alone when you are feeling depressed is only going to make things worse. Family and friends are there to support you. Talk to them about ways they can help, whether it be helping with small chores, making you laugh, or not talking about your illness at all!
5. Remember that you are not always going to feel this way – When you are living with any chronic illness, some days are going to be worse than others. But your symptoms will improve, given time and treatment. It’s important not to get stuck in a rut of negative thinking. Instead, when you are feeling down, think of some of the things you would like to do when you start feeling better. Having ideas of positive things you want to accomplish will give you something to look forward to.

Remember, as hard as it is, it’s important to stay positive when you are feeling down. A negative outlook is only going to exacerbate your symptoms and make it harder for you to get well.

Appreciating Life

Ask anyone who has suffered with a chronic illness and I bet they'll agree that living with a chronic illness changes one's perspective on life. When things are bad, they're bad and it feels like they're never going to get better. But when things are good, you see life through a different lense than most people.

Although I've lived with rheumatoid arthritis since I was a baby, this new perspective on life didn't really hit me until about a year and a half ago when I started the process of the j-pouch surgeries. I think I didn't feel this way with the arthritis because it's something I have always lived with - I don't know life without the arthritis. When I was diagnosed with ulcerative colitis my thinking was "well, just another thing to add to the list", meaning that my life changed a little bit but not significantly. However, when the last flare started and I began the process of the surgeries, my life was turned upside down. There have been so many ups and downs within the last year and a half that when I feel good I appreciate every second of it and want to take advantage of it as much as I can. I now appreciate the smallest things that most people don't even give a second thought - eating whatever foods I want, taking a shower, sleeping in my own bed, walking my dog, going to the gym. I find myself on a daily basis savoring that piece of chocolate just a little bit longer, or doing just a little bit more at the gym - because I can. And now I appreciate that I can.

8 Things to Avoid When You Have IBD

There are so many things to do and not to do when you have IBD (inflammatory bowel disease). In my experience, these are the top 8 things to avoid when you have IBD:

1. Stress - While there is no known cause of IBD stress can definitely be a trigger. Now you are probably thinking "How in the heck am I supposed to avoid stress? That's impossible!" While I know it's hard to avoid stress completely, reducing stress can be a great benefit to you. Everyone has different ways of reducing stress. For some, including myself, it's by exercise. Others reduce stress by reading or watching TV. Find something that works for you.

2. NSAIDS (Non-Steroidal Anti-Inflammatory Drugs) - This is a big one. Many gastro's advise their patients to avoid long-term NSAID use because they can cause serious adverse affects in people with IBD. They can cause ulcers in the stomach and first part of the small intestine, and they can worsen bleeding and inflammation. I have firsthand experienc with this, and let me tell you, it's not fun.

3. Certain Foods - Now this varies from person to person. While certain foods don't cause IBD they can trigger a flare or cause discomfort and worsen diarhea. It's important to find what foods work for you and what don't. While you are trying to figure this out, keep a food journal to help you out.

4. Dehydration - It is so important to be aware of dehydration when you have IBD. Because of all the lovely bathroom trips that come along with flares, it's essential to make sure you are getting enough liquid every day.

5. A sedentary lifestyle - This is going to vary from person to person, and it's also going to depend on whether you're having a flare or not. For me, before I had surgery, I was very active. I went to the gym 3-4 times a week and also did yoga. When I had a flare though, I couldn't do as much and cut back on most of my exercise until I felt better. Find what works for you. Some sort of exercise is important though, not only because it's good for your body, but because it's good for your mind too. When you exercise, your body releases endorphins which not only put you in a better mood, but help with stress as well.

6. Malnutrition - When you have IBD and are having a flare, it is really easy to become malnourished. You don't have an appetite. You are in pain. You are constantly running to the bathroom. Because it is so easy to become malnourished it is essential to get the nutrients you need in some way. It helps to eat small meals throughout the day. Find nutritional food you can tolerate. Drink protein drinks. Take supplements in pill form.

7. Isolation - Having a disease like Crohn's Disease or Ulcerative Colitis can be very isolating. People who haven't experienced these diseases just simply don't understand what it's like. Not only that, quite frankly, it can be embarrassing! However, isolating yourself will only make things worse. Find an IBD, J-pouch, or Chronic Illness support group. I go to one, and let me tell you, it is so helpful to talk to other people who understand what you are going through!

8. Smoking - Especially if you have Crohn's. People who smoke, or who have smoked in the past, have a higher risk of developing Crohn's than those who don't smoke. Crohn's disease patients have a higher risk of relapses and repeat surgeries. Interestingly enough, in patients with ulcerative colitis, nicotine has been shown to have a positive short-term effect on those having a flare. I AM NOT TELLING YOU TO SMOKE PEOPLE! I'm just saying, there is research going on now on the effectiveness of nicotine patches in controlling flares in patients with UC.

Well, that's all I've got for now...stay tuned for more.