“Based on your medical history…” The nurse’s voice starts to fade out because I already know what’s coming next.
I have another virus. It just has to run its course. There is nothing they can do to help. ‘Hydration to the rescue again,’ I think to myself. Perhaps it’s better I don’t need antibiotics, those could lead to other issues. Rest, stay hydrated, repeat, and get on with your life.
Oh, the joys of living with an autoimmune disease, in my case, Ulcerative Colitis (UC). Autoimmune literally means my immune system is attacking myself, therefore my body is always fighting internally — my insides are to blame. The only way to ‘fix’ this, is to make my body believe there is nothing worth fighting for by taking immunosuppressant medicines. Oh, but there is a catch, my immune system will always be weakened and it will always take my body longer to get back to ‘normal’ than the average person.
What the Research Says
Ulcerative Colitis and Crohn’s Disease are known as Inflammatory Bowel Disease (IBD) and affect more than 5 million people worldwide. The cause is not something doctors can necessarily pinpoint, but IBD develops based on genetics, environmental triggers and stress level (immunity disturbance). “IBD is found mainly in developed countries, more commonly in urban areas, and more often in northern climates”, according to the Crohn’s and Colitis Foundation (CCFA).
Based on one major study about IBD, the CCFA stated that, “Asians and Hispanics are diagnosed with IBD at older ages than Caucasians and African Americans. A higher proportion of Caucasians had a family history of IBD than African Americans or Asians. Other research shows that people of various ethnic groups who have immigrated to the United States from countries with low incidences of ulcerative colitis have higher rates of developing the disease once living in this country. This suggests that race and ethnicity alone are probably not the sole determining factors, and that unexplained environmental influences are at work.”
[perfectpullquote align=”left” bordertop=”false” cite=”” link=”” color=”” class=”” size=””]I didn’t realize how widespread chronic illnesses were and I certainly had no knowledge that they can affect people of any race and any age. [/perfectpullquote]
Accepting and Coming to Terms
When I was first diagnosed, nearly 6 years ago, I had only heard of IBD because a few of my cousins and parents’ friends had it, all of whom were Ashkenazi Jews. I didn’t realize how widespread chronic illnesses were and I certainly had no knowledge that they can affect people of any race and any age. Somehow I had fallen into the same category as Multiple Sclerosis, Type 1 Diabetes, Lupus — which all terrified me — and suddenly I needed to comprehend what was happening to my body, and that it would be forever.
[bctt tweet=”Suddenly I needed to comprehend what was happening to my body, and that it would be forever.” username=”ParentVoiceMag”]
It is really difficult to accept that you have a chronic illness at any age. I was 30 when I was diagnosed and basically went through the five stages of grief: denial, anger, bargaining, depression and acceptance. I was mad that I was sick and in denial that it would be my forever-illness. I had never relied on medicine before and now I was being told that I’d potentially have to be on drugs my entire life. My family kept sending me information about different medicines and suggesting I get surgery, because that ‘cures’ it. For the record, there is no medical cure for IBD, just remission. My husband’s family, who is Chinese, kept suggesting special food I should eat, Chinese medicine, and told me I should get acupuncture to ‘cure’ my IBD.
[bctt tweet=”At our bridal shower, wedding, and on our honeymoon, I was very sick.” username=”ParentVoiceMag”]
In Sickness and in Health
My husband also went through the stages of grief and it took him even longer to accept that this was our new life together. It took me 14 months to get out of my flare-up. For me, it was 9 months of prednisone (steroids), which luckily are a temporary fix. At our bridal shower, wedding, and on our honeymoon, I was very sick. When we said our vows, in sickness and in health, we were already in the midst of ‘sickness’. If this diagnosis had happened when my daughter was already born, I think it would have been even more difficult. It would have been nearly impossible to live the mantra “Healthy Mom, Healthy Baby” and to put myself first.
[bctt tweet=”When we said our vows, in sickness and in health, we were already in the midst of ‘sickness’.” username=”ParentVoiceMag”]
I have been lucky to be in remission for my UC for nearly 4 years, and while this in itself is incredible (and trust me, being in a flare is absolute misery), it’s mostly due to the fact that I take about 10 daily pills, eat a restricted low-residue diet, and spend 4 hours every month on IV infusions at the hospital. My body has come to believe there is no need to attack itself by being manipulated by drugs. If I am getting a cold or another virus, the medicines ‘hide’ it until it’s so bad that I have no choice but to go to the doctor, again, and get blood work, again.
[bctt tweet=”I take about 10 daily pills, eat a restricted low-residue diet, and spend 4 hours every month on IV infusions at the hospital.” username=”ParentVoiceMag”]
Motherhood and Living with Ulcerative Colitis
For the most part, avoiding viruses has been smooth sailing…that is until my daughter started pre-school. Once the weather became colder, the germs arrived with a vengeance on her and inevitably on me. First, she had Hand, Foot and Mouth disease. As a mother, it is impossible to not take care of your child when they are in pain, and although I have weakened immune system, there I was with her. Screw my body, I need to be with my child. Well, I paid for it…the week after she got better, I was literally in bed sleeping 16 hours a day, fighting off some ‘virus’. Once I got healthy again, the next week she had a terrible cold and scratchy throat. And ‘voila’, here I am, heading back to the doctor again. While my daughter quickly (and literally!) bounces back to health, these viruses stay in me longer because my immune system can’t fight them off very fast.
[bctt tweet=”Screw my body, I need to be with my child. Well, I paid for it the week after she got better” username=”ParentVoiceMag”]
This season is going to be a tough one on my body, physically and probably mentally too. The Japanese proverb “Fall seven times, stand up eight” seems appropriate now; I’ve got to stay positive. Besides, the good thing is that these various illnesses will be building up my daughter’s immune system! Hopefully she will be stronger and more resilient for it, I know I sure am.
If you have a chronic illness, here are a few tips to yourself and your family healthy during ‘germ season’
- Wash hands
Hopefully this goes without saying, but especially before and after meals, when you change kids’ diapers, and when you drop/off pick up from school.
- Don’t share meals/drinks
It’s hard to not give your children your water bottle when they are screaming for it, or to not nibble off their plates when they don’t finish their dinner, but believe me, your body will thank you for it later!
- Get your flu shot
Most insurances cover the cost (in the U.S.) and it’s preventative! Make your whole family get the vaccination!
- See your doctor if you feel unwell and keep in touch with them
You have to take care of yourself and be your own advocate. Doctors don’t follow up with the patients so if you feel like you are getting sick, let them know right away.
- Try to manage your schedule and stress level
Being a parent is tough! But remember, getting rest (when you can!), staying hydrated and sticking to your normal schedule really will help your body stay healthier. With holiday travels and schedule changes coming soon, just remember to not pressure yourself or get overloaded! Let someone else host the holidays this year if you are feeling ill!
December 1-7 is Crohn’s and Colitis Awareness week in America.
For more information, please visit: http://www.crohnscolitisfoundation.org
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