Living with cystic fibrosis my whole life hasn’t been an easy road traveled, that’s for sure. Today, I’m here to share a whole other set of issues I struggle with on a daily basis, as a woman living with CF. These are my honest and sincere feelings. This post was definitely challenging and even uncomfortable to write at certain points, but if I can help at least one woman, then its all worth it.
Career & Making a Living
I missed a lot of school, due to being sick for several years; I barely made it to my high school graduation. After such a stressful year, trying to pass several tests, the last thing on my mind was applying for college, which raised an important question; did I really want to go to college? What if I made it through college and couldn’t maintain a job afterwards. I never know when I’m going to have a bad day. My stomach issues could flare up; my blood sugar could be too high or low or I could be just plain tired, which seems to be happening a lot lately. I have a consultation scheduled next month with the sleep study clinic. Just another appointment added to my calendar full of them.
If I attended college, how on earth would I pay back my student loans? Did I want to risk being far into debt, with no way to pay it back? My short answer was, no. I decided college wasn’t the best choice for me. I qualify for disability checks, but it’s barely enough to pay less than half the rent, food and necessities. Not to mention, a cell phone bill that I can’t live without!
Office jobs are best for those living with CF. You get to sit in a nice air conditioned space, you can take your medications and do breathing treatments right at your desk.
I’m thankful for my creative talents that have allowed me make a few bucks over the past few years. I’ve sold several pieces of jewelry and during the holidays, sets of Christmas cards. I enjoy creating projects for others, but I’m always pondering, Is this good enough to sell?
Fertility & Pregnancy
Fertility issues are common in women with CF. Women with cystic fibrosis have thicker cervical mucus due to abnormal cystic fibrosis trans membrane conductance regulator (CFTR) function. Thicker mucus can make it harder for sperm to successfully penetrate the cervix and can increase the amount of time it takes to become pregnant. Another concern is poor nutrition leading to irregular ovulation. Despite thicker cervical mucus and possible ovulation issues, it is important to remember that women with CF are still fertile. Healthy women with CF often do not have compromised fertility and experience few physical barriers to becoming pregnant aside from having thicker cervical mucus. For this reason, regardless of how severe their CF may be, all women with CF who are not ready to have children should use contraception to prevent the possibility of unplanned pregnancies.
Since I am post transplant, I personally have an added hurdle when it comes to family planning. Due to anti-rejection medication causing birth defects and miscarriages, I had to sign a waiver stating I will be using birth control and will notify my doctor first, before becoming pregnant. I am limited as to which type of birth control I can take. The digestive system doesn’t work properly for those with CF, therefore, any type of oral birth control pill is not recommended. Some women, like me, have experienced bone loss from long-term use of Prednisone, which means the Depo-Provera shot is out of the question. My options are narrowed to an IUD, which can be painful during insertion and removal or Nexplanon. (Arm implant)
Pregnancy after transplant is do-able but is not recommend by most physicians. Studies have shown very few success rates for post transplant pregnancies. For me, it would be far more dangerous, especially with diabetes. This is a huge obstacle I’m currently experiencing myself, not having children. I am quite active on Facebook. I can see friends having babies, that got married after we did. I’m very happy for these friends. I enjoy seeing cute baby photos, but deep inside I feel jealousy and sadness. When I feel jealous I’m thinking, why do you get a baby and I don’t? When I’m sad I’m thinking, I will never see a baby of mine smile or laugh or walk or talk. I will never get to be the mother I always dreamed of. For any woman struggling to conceive, or who can’t have children for one reason or another; I can feel your pain and your sorrow. God has a bigger plan for you, than you had for yourself. There are brighter days ahead.
My other options are surrogacy or adoption. Both, come with high price tags. I’ve had other women tell me, you can always choose adoption. Let me tell you, while the wounds are still fresh, this is absolutely the wrong thing to say. I feel like it’s our duty as women to bear children, and when that gets taken away, you feel less than. In what other ways can I be useful? I have found it soothing to talk to other women with similar struggles as me. They are the only ones who truly understand how I feel.
There are some women with CF who simply choose not to be a mother, because of the time and attention it takes to be one. Dealing with a sickness and being a mother all at once is incredibly challenging and physically exhausting. Someone needs to be there to take care of your child, while you are sick or in the hospital, if your husband is unable to. Of course, there is absolutely nothing wrong with not having any children. You will have much more time for everything else. One less thing to stress about!
It’s no surprise that I have suffered from depression and anxiety after everything I’ve endured throughout my life. There are times when I’ve felt like I haven’t contributed anything to our society. Useless. Giving up seemed like a pretty good idea. What could I possibly have to offer? Who would want me? I have too much physical and emotional baggage. When you’re feeling like this, what you need is a strong support system. Weather it’s your spouse, parents, or healthcare professional. We all need assistance at one time or another. There is no shame in seeking the help you need. I’ve taken anti-anxiety medication in the past and I’ve refused to try any anti-depressants.
For me, the boost I needed was waiting inside of me. No amount of medication or therapy was going to get me to where I needed to go. Nothing good happens when you sit and wait for success to come to you. It requires hard work and dedication. I realized the two things holding me back from enjoying life was; fear of failing and telling myself, what if I get sick again? After being in a depression for several years, I knew had to change, or else it would only get worse. I began thinking positively instead of negatively. I surrounded myself with an encouraging group of women at church and I took the first step to set up a blog. I’m thriving. I almost forgot what it was like to be happy.
Relationships, Marriage & Sex
It can be awkward and sometimes uncomfortable discussing specific health issues with friends. Real friends will understand and not judge you for who you are. They will offer their words of wisdom, send you cards and gifts and come visit you at the hospital. Those are the ones that are worth it. All of my friends who do not live with CF have been supportive of my disease and understand I’m unable to hang out, because I’m not feeling my best or being restricted from doing certain things. There are situations where women and even men with CF, distance themselves purposely, because they might be afraid of losing that person. I am guilty of doing this myself.
Romantic relationships can be a lot more challenging than regular friendships. How do you know when it’s the right time to tell him you have CF? By the way, I also have diabetes, a feeding tube, scars, all over my body and I’m hard of hearing. The first thing I mention is, I’m hard of hearing, because that’s pretty obvious during the first meeting. I usually wait until the second or third date to tell him everything else. Some women might think this is too soon, but I personally do not want to invest months of time into someone that might kiss me goodbye after my bombshell conversation. I did have one guy who actually did not approve of it and couldn’t stand the thought of possibly losing me too early in life. It was too much for him to bear mentally. While I appreciate how much he cared for me, I’m glad our relationship didn’t go any further. I was already angry, at the little time I had wasted. When you meet someone, they must accept your entire package deal. It takes a very special kind of person to love someone with a terminal illness. That’s exactly what my husband is. Special. We’re in this together, in sickness and in health.
When I met my husband, I knew he was the one. One challenge in our relationship is the fact that he did not meet me until after my double lung transplant. The worst of my life had been over. (not that I wanted him to be there for it) He may not understand the way I act sometimes, due to past situations. I’ve had a few health scares since we’ve been together. Each time, I’ve tried to maintain conversations without scaring him. I try my best not to show I’m scared, because I want to protect him from feeling panicked and hurt. My husband thinks of me as a normal healthy person and forgets there is even anything wrong with me at all, which can be a good thing! I don’t want to be treated differently, because of my disease. He may wonder why I always want a reason to celebrate. I didn’t receive a second chance to live an ordinary life. I received a second chance to live an extraordinary life.
Sex is it’s own topic. Foreplay can be fun, when your breasts don’t have nerve damage. During my double lung transplant in 2007 my surgeon used what they call, a clamshell incision, which is right under the breasts. Nerves have been cut through and while the numbing can wear off soon after the surgery, for others, like me, the numbness has always been there. I could drop an ice cube down the front of my shirt and feel the cold, but not scream from the shock.
Our medications are a common cause of decreased libido. Fortunately, I haven’t experienced this. Surprisingly, my libido is much higher than a woman who doesn’t have CF. Other times; we are physically and mentally drained of energy, resulting in no desire to be sexually active. Another important factor is, Gynecological health. This is necessary in women with CF because of medications causing yeast infections.
Appearances & Self-Confidence
As a woman with CF, I have had to deal with being on a different level than my peers, at different points in my life. I was always behind in school and I didn’t make a lot of friends due to not attending classes. More recently, I’ve been feeling left out of the whole world of new moms. I can’t relate to these women at all. Unfortunately, at my age, women are beginning to have children and for me, that’s just another reminder of why cystic fibrosis is such a soul crushing disease.
Many men and women living with CF struggle to gain and maintain a healthy weight caused by malnutrition and poor appetite. Enzyme capsules are taken to help digest food and gain weight, however, sometimes that’s not enough. It’s just as hard for us to gain weight as it is for an obese person to loose weight. I had a MIC-KEY feeding tube placed in my stomach when I was eleven years old and I still use it today. I pour nutrient rich formula in a bag, with tubing, that runs through a machine every night and into my stomach while I’m sleeping for eight hours. How do I feel about a feeding tube sticking out of my stomach? Well, not attractive. That’s for sure. I’ve had it for so long, I often forget it’s there. You wouldn’t even know I had a feeding tube under my shirt, unless I told you. There are days when I wish I had a tube-free body like the women I see on Facebook, but don’t we all want something we can’t have? You learn to accept it.
Several women with CF have small body frames. I have been a skinny girl all my life. Do I like it? No. I’m a very short woman, only five feet tall. My skinny body, makes me look like I’m twelve years old. I’m well aware this will help out a lot when I get much older, but for now it puts me in situations I don’t want to be in. I often can’t reach for products on the top shelves at the grocery store and have to ask for assistance, which always makes me wonder, this person is probably curious as to why a twelve year old is shopping alone. I was once shopping at Michael’s when the cashier asked if my parents were members of the reward program or even worse, I was buying a bottle of wine and a young ignorant kid working the cashier took one look at my ID and says to me, ma’am, this doesn’t look like you, are you sick? I didn’t have the courage to say anything back. There are days when I hate being little and there are days when I embrace it. My husband thinks everyone is so nice to me everywhere I go, because I’m so little and cute. Maybe he’s right?
Are you self-conscious about a scar? What if you had more than one, or two, or three? I’ve got tons of them! I remember when my step-mom helped me cover up a scar, before I went to my high school homecoming dance. I was so sure the other kids would notice and mention it! It must have been my teenage mind at the time, because ever since then, I haven’t been bothered by my scars, or what I like to call, battle wounds. I’m proud of my scars. They remind me of how I made it through my biggest roadblocks and survived to tell my stories. I am brave, I am strong and I am beautiful.
Managing Daily Healthcare
My daily life is filled with all different types of medications that help with all different kinds of issues, such as, acid reflux, blood pressure, vitamins, and several anti-rejection meds. I take over fifteen pills a day and in between, I still have a life to live. I’m a homemaker. I clean, I dust, and I vacuum. I do loads of laundry and I wash the dishes. I go grocery shopping and cook dinner for my husband whenever he asks me to. Despite all of these chores, I deal with daily fatigue. I often have to take breaks and sit down in between chores. I get them done, but it might take me a little longer than I would it to. If I seem to be feeling like something could be wrong, I always use my electronic blood pressure machine and my battery operated pulse ox monitor to make sure everything is OK. During the summer months, I make sure to drink extra fluids, to keep from becoming dehydrated. Of course, there is always time to do what I love to do, arts and crafts. I stay completely focused on my craft’s and writing my next blog.
People with CF, and especially those with transplants, have compromised immune systems, which means, we need to be extra aware of our surroundings. If a friend or family member is sick, stay away from them, until their symptoms have cleared. My husband has actually been sick this week, with a cold. He’s been sleeping on the couch and we haven’t kissed at all. If I caught his cold, it could turn into an upper respiratory infection, which could turn into something much worse. It’s better to be safe than sorry! Hand washing is really important and I always carry hand sanitizer in my purse. I planned on visiting our local zoo today with my sister, but because of the heat index alert, it was unsafe for me to go, in such conditions. I was really looking forward to it, as I haven’t been to the zoo in over a year, and I wanted to see the new baby hippo! I also can’t enjoy a nice swim during a hot summer day because of the risky bacteria that could possibly be in our apartment complex pool. When it comes to being cautious, I use common sense. If it doesn’t seem like a good idea, then it probably isn’t.
After reading this, you might be thinking, how can you possibly be living a full and happy life? Remember, I’ve been living with this horrific disease since the day I was born. Twenty-six years is a long time to learn and adjust. What is normal to me, is not normal to you. God might have made me different, but He sure did make me special.
Blessings to all the CF women in my life!
This blog is not to be considered medical advice. Consult with a physician who specializes in the care of cystic fibrosis patients.
Read More about cystic fibrosis, diagnosis, genetics, treatments, and research.