Gastroparesis: Brittney's Story
It is really scary having a disease that even medical providers do not know exists.
A Day in the Life with GP
It is 1:30 in the morning. The monster that dwells within my stomach wakes me from another nightmare. As I sit up, the intense nausea practically brings me to my knees. I am dry heaving. Some people compare this to having the flu. In my experience, gastroparesis (GP) makes having the flu look like a walk in the park. What I am going through is worse than any hangover I have ever had or the time I got food poisoning. I take a Zofran for the nausea, and I relocate to the recliner so I can sit up.
The minutes seem like hours. Time passes by so slowly. It is now 4:30 a.m. I have been sitting in the chair unable to go back to sleep. I am having anxiety. The stress this sickness causes is indescribable. I am also very depressed. At times I have thought about suicide, but so far I have not acted on those thoughts. When I am in a flare (that is when my symptoms are worse than usual,) I become very scared and confused. My mother calls it crossing over to the dark side. My thinking is negative and irrational. I want to die. The psychological aspects of this disease are almost as bad as the physical, and they do feed off each other. Even though I see a therapist and take an antidepressant, my mind has turned into my own worst enemy thanks to GP. Whenever I can sleep, GP haunts me in my dreams. I never really can escape. It is relentless, and I suffer 24/7/365.
It’s around 5:30 a.m., and the worst part of the sickness is starting to pass. As my old Dell Desktop is booting up, I have to go to the bathroom. I praise God the laxatives have worked. When I first got sick I suffered from chronic diarrhea. It was so bad I spent a good portion of my time on the pot. I have had my share of accidents in the bed and in my pants. That has to be one of the most demeaning feelings I have ever experienced in my life. I don’t have to worry about that anymore, though, because with all the medications I take, I now suffer from the opposite problem. Sometimes I go for days without going. When I finally do have a bowel movement, it is extremely painful. I am usually impacted and the feces must be digitally removed, which makes me bleed from my rectum. That entire experience is physically and emotionally brutal. Who knew a simple bodily function could be such a traumatic ordeal?
It just took everything I had in me to feed my cats. I feel bad for my pets. I can hardly care for them anymore. My mother usually has to remind me to feed them. I never talk to them or play with them nowadays. I just don’t feel well enough to participate in those types of activities anymore. Those are the kind of things I used to love. GP has truly touched every area of my life.
I am weak and shaking. I can hardly think straight as I sit down at my computer. I am so cold. For some reason I am always so cold. I turn on the heating pad and pile the blankets up over me. I live in Arizona, where it is over seventy degrees outside right now, and I am still freezing! I can’t even begin to imagine living in a cold weather climate with a diagnosis of GP.
Shivering, I log onto Facebook. Last April I took a turn for the worse and ended up with a flare that lasted months. I was so sick I could not leave the house. All I could do was sit at the computer. I ended up meeting other people online just like me, who also suffer from GP. That is one of the only good things I have gotten from this horrid disease. I have made many great friends that mean the world to me, even though I have never met them personally. I also found many support groups where these same people shared their experience, strength, and hope with me. I have read GP only affects about 5 million people, and the medical community does not know much about it. In fact, the ER staff had to Google search “gastroparesis” upon my last admit. They had never heard of it. Neither had I before I got the diagnosis. It is really scary having a disease that even medical providers do not know exists. My regular GI doctor has only had three people in his entire career with GP. His other two patients are diabetic. I am the only person he has ever treated who is “idiopathic” (which means they do not know what caused the GP). So, the GP community on Facebook has taught me more about this disease than any doctor has – and more than what I have been able to read about on the Internet.
Facebook is also how I socialize. Since I am always sick, many of my “friends” no longer have anything to do with me. It is hard to make plans to go out when I never know how I am going to feel. Half the time I end up having to cancel. I have all but given up hope of ever finding a potential mate who will accept me being sick. I have no sex life at all. I am so very lonely.
However, I am fortunate to have my family by my side. I had to go home to live at my parents’ house about a year ago because my symptoms became so bad I could no longer work. I ended up losing my apartment and everything in it. I filed for disability and got denied. I have appealed that decision. Who knows how long it will take before I am approved? In the meantime, I am flat broke, and I am on public assistance. Twice in the last few months they have told me my medical insurance has been cut off. Both times were apparent mistakes, but do you know how upsetting that was? I have never been so afraid in my life. I really wish I could work and be self-supporting; relying on the government is really unreliable.
Okay, I have taken my morning meds, and I ate breakfast. My breakfast is the same every day: one Activia yogurt. Since I got diagnosed, I have been on the GP friendly diet. I can no longer eat the things I love. The diet is very restrictive. Following the diet has helped decrease the violent vomiting, but I have developed a fear of food. To be honest, I only have about 10 different “safe foods.” Since I am always sick, I don’t really consider them “safe foods.” At any rate, I am terrified of eating anything new or different outside of those 10 things. I have lost a little over 80 pounds since I have been diagnosed with GP. I do not go out to eat at restaurants anymore. When I first got sick, just looking at all the food on the menu and seeing what the other customers were eating was more than I could take. The smells of all of that food made me even more nauseated. I hate getting sick in public so I just don’t dine out. Even watching television is rough. All those commercials with all that yummy food I can’t have really messes with me sometimes.
Then there are the holidays! I usually become very depressed during what is supposed to be a happy time. In America, our holidays are all centered on food. Hell, I can’t even have cake on my birthday anymore. The last time I did that, I wound up in the emergency room. It is really tough, but at least I can still eat. Many people with GP rely on tube feeds and TPN for their nutrition. I struggle with maintaining my weight, malnutrition, and dehydration on a continual basis.
It is now about 9:00 in the morning. My 70 year old caregiver is awake. My mom has become my caregiver. It makes me feel so bad knowing that I should be the one taking care of her. I also wonder what will happen to me when something happens to her. Right now, I do not have the finances or physical and mental well-being to take care of myself. My future does not look too bright, does it? In the meantime, watching me get sicker and sicker is killing my family. My four year old grandson does not understand why I can’t play with him for more than a few minutes at a time. That kills me.
Now it is time to get dressed. I mostly wear baggy sweat pants as I can’t stand to have anything restrictive around my tummy. It takes all of my energy to stand in the shower. I did not shave my legs all winter long. I only wear makeup on special occasions, which is pretty much never anymore. I have not had my hair done in about two years. I was a real girly-girl before I got sick. I was never without hair and makeup. I always wore a dress and high heels. GP has robbed me of my femininity, my sexuality, and my self esteem.
From about 3:00 in the afternoon until I go to bed is usually the best time of day for me. On a good day, I will usually try to do something around the house. It has become increasingly challenging to clean and do my laundry. This is also the time of day when I try to arrange my doctor’s appointments. I am too sick to go in mornings. Can you imagine being too sick to go to the doctor? Can you imagine the doctor’s office being the only place you ever really go?
Now it is dinner time. Just recently, I had to go to liquids only for dinner. It is so hard to watch everyone else eat a burger and fries while I get broth or a nutritional shake. After dinner I try to walk around the block. Remember, I have little energy, but I do believe this little bit of activity helps with motility. I watch television for the remainder of my day.
It is now about 8:00 in the evening. I take my laxative and hope for gentle overnight relief. I fill up my pill cups for the next day. I take so many different medications now that I have to place them in cups, so I can keep track of whether I have taken them or not. I have forgotten to take them, or have taken too many on occasion, and this has led to problems.
There are very few medications available to treat GP. When I first got diagnosed, I was on Reglan. That medicine has a black box warning. I started having side effects that are now permanent. Now I take Domperidone. It also has serious potential side effects, and I have to get regular EKGs. Dom is not approved for use in the United States. I have to order it online from Canada. It takes about ten to thirty days to receive. One of my biggest fears is that I will not receive my medication on time. I get very sick within a day of not taking the medication. I also fear the day it stops working.
Currently, I am seeing a motility specialist at Mayo Clinic. There are not many treatment options available for me. I am going to start alternative therapies. I see a chiropractor next week and I hope to see an acupuncturist and Chinese herbal medicine doctor in the near future. I am also going to be checking into Botox injections and a Medtronic stimulator. As I mentioned, I have no money, and I do not think my insurance will cover those procedures, but I am still going to look into it. At this point, I am desperate to feel better, and I am willing to try just about anything.
I go to bed at around 9:00 p.m. This is when I pray. My faith in God is what gets me through the hell I endure every day. So, I hope and pray for a good night’s rest without nightmares. Then the monster that dwells within wakes me about one o’clock in the morning to rear its ugly head again…