Sunday, June 30, 2013
Surreal
It's been so long ago, the medical tests and procedures, the surgeries and the struggle for life. It's been a lifetime ago but it doesn't always seem like my life. I have to remind myself that it was my life and not someone else's life. I feel like I'm looking through a looking glass, peering into someone else's memories and past. Not my own. And yet it is mine. Every horrible moment, every joyous cause. It's all mine.
I never thought the terror and the battles would fade so much. They don't occupy my mind all the time anymore. I remember everyday but it's just in passing. When my stomach rumbles, when I have to run to the bathroom, when I'm sore. But it's only brief reminders. Even when I have flare ups, it's just for a night and I can forget the next day. No more constant reminders and complete worry about what I'm eating or what I'm doing. I still feel concerned but it doesn't consume me anymore. How has this change happened?? I've become so far removed from it all. I have my regular check up every three months but I don't have anymore medical tests or procedures. Not even routine. I should have an annual scope but I haven't in 5 years. My doctor knows I'm not budging on this one, I'm not going through the torture of laxatives and enemas. Find another way, I'm not doing it. That's how. I haven't had to go through pain and torture in five years except for flare ups and 1 CT Scan with dye. I'm not being forced to relive the nightmares. I've been granted a pardon, even if only for a short while.
I have to make myself remember the details of those awful years of pain and struggle. It doesn't seem possible that it all happened to me. That it was me going through it all. I swear it happened to someone else, not me. Why are people worried about my health? I'm fine, that wasn't me. But it was. It was me. And they remember. They remember the countless hospital stays and trips. The never ending medical tests and procedures. The need for another surgery. The fear and worry in the doctor's face, the nurses, the surgeons, the team of specialists. The terror I expressed, my screams and cries. My pleas for it to end, to let me die. They remember.
Once I'm thrown back into the medical den it will come flooding back and I'll be consumed again. But for now, for now I've been given mercy.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
Saturday, June 22, 2013
To Keep My Mouth Shut
I don't think I'll ever learn when to keep my mouth shut. There are so many times I wish I had for my sake. We need to listen to our bodies, especially when our body is screaming at us! Our body knows what it needs, we just need to listen.
I try not to drink anything close to or after bed because it upsets my stomach and causes bloating, gas, and pain all night long. Instead of getting up about three times during the night like usual, when I drink before our after bed I end up being up and down close to eight times during the night! Last night was one of those nights and I knew better but that cold liquid kept calling me. I'm probably dehydrated at night because of the SBS, which is why it's so tempting to take a drink at night.
In the Evils of Food I discussed the challenges I have with food and activity. I also have a hard time listening when I need to not eat or stop eating. I had lunch today and shortly after my body rid me I shouldn't have eaten, I should have just waited. After almost six hours my stomach is finally reducing in level of pain and discomfort. There are many times that I ignore warning signs and keep eating because the food tastes so good or I think I'm still hungry and then I end up with a SBS flare up within about an hour later. For a long period I wasn't able to eat any ethnic foods, they were too rich for me and I experienced severe bloating and pain for the remainder of the day. For several years I was devout about avoiding ethnic foods in order to prevent such occurrences and over time my body began to recover from the surgery traumas and to adapt to more foods thereby allowing me to have more of a varied diet.
The way our bodies are today isn't how they will be forever. Our bodies change and adapt and even regress. The key is to adapt with our bodies and to listen to what our bodies need in order to enjoy life without unnecessary pain and discomfort.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
Sunday, June 9, 2013
Stress Effects
This last week has been very stressful work wise, 5 days felt like 2 weeks! And I could tell it was starting to wear on me physically. There's always those telltale signs warning you of impending danger if immediate action isn't taken. And I was starting become leery of those alarms.
The first couple nights of the week I was so exhausted that I slept through the whole night. This may be the norm for some, but it isn't for me. I'm usually up 2-3 times a night to use the restroom so if I'm sleeping through those bodily alarms, I know I'm needing the sleep. Well the last couple nights of the week I changed the routine and started having stress dreams, so I wasn't getting much sleep at all. When I wasn't in a deep sleep, I was dozing with stress dreams. This is also a dangerous pattern as there isn't any rest or recuperation obtainable in such a state.
My lip became tender and I just knew my body was about to explode with it's own rebellion against stress in the form of fever blisters. Throughout childhood and until the end of the collegiate career, I was a fever blister queen. Anytime my immune system became threatened, I had at least one giant, painful, eye sore of a fever blister. And most of the time I had 2-3 of them, even to the point that for a period I even developed impetigo - blisters on the skin that break open and become crusty. I've had fever blisters and impetigo so severe that the skin around my bottom lip is scarred. My GI doctor said that I'd likely outgrow these fever blisters and she was right, I have a fever blister maybe one or two times a year now. But even so, I remain leery of this ticking time bomb.
Because of the stress, I started to notice some depressive symptoms as well. I started to become withdrawn and saddened. I started to have meltdowns at work and home, moments where I couldn't hold back the tears. All I wanted to do was stay in bed and cry but I knew that I needed to force myself to talk to others or I'd easily get sucked into the deep spiral of depression. The emotional and physical sides of health are linked, they affect one another. So anytime one is in danger, so is the other. It's important to balance both for one's own well-being.
I also tend to stress eat, I want to eat anything or everything and this leads to overeating which upsets my digestive system. I felt miserable - bloating and SBS are not wonderful symptoms nor are they when combined.
These were the loudest alarms and I knew if I didn't get a handle on this stress, my body was going to rebel further. In the past, under extreme stress my intestine rebelled by constant SBS flare ups to the point that functioning was nearly impossible. I'm terrified of this happening again as I wouldn't be able to maintain employment in such a state.
I started to let others in, sometimes it's hard to accept help from others. I'm an independent worker and I usually figure there isn't much someone else can help me with - that it's not going to save time or effort. I leaned on friends and made a bit of time for a mental break - such as tagging along on a lunch run just for the change of scenery for 10 minutes. I used some free drink coupons and got a special treat to help me through the day. One evening I vegged out and just watched television with my husband and cooked a healthy meal. I quit beating myself up over things out of my control and started giving myself pep talks. So today, I feel better. I feel ready to be let back into the ring for another fight tomorrow. Here's to hoping this week is better too!
Labels:
Health,
Mental Health,
Symptoms
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
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