FAPulously Overwhelmed

I apologize for not posting for such a long time. Sometimes it's hard to do this, sometimes I feel so drained by the end of the day I don't want to do anything and other times I feel so good I want to go out and enjoy it for a change.

A few things have happened since my last post. As you may recall from Energy Rescue, I have difficulty with B12 like many FAPers. My B12 has jumped to 1095 after another month on B12 microlozenges, that's just 5 points below that to range! I definitely recommend anyone with low B12 to talk to their doctor about these microlozenges. My hemoglobin still remains below normal, even though a good B12 helps with absorption of iron. However, I have so many stools, and some body, that I don't think it can be helped. So I keep taking iron every time I eat. My last scope didn't show any ulcers or anything to explain how I'm continually losing blood. I believe my intestine becomes easily irritated if I'm unable to have a bowel movement or if I delay a movement for too long, in this case diarrhea and SBS are my friends!

I have even restarted taking the sulindac to reduce polyp growth.

In Ending the Family Cycle, I've mentioned my plans to have a surrogate and use only my eggs that don't have the FAP gene in order to have a child. Well as the time to try this continues to near, the more I've been overran with a desire for a child. Even to the point that I started double guessing my plan and considering risking having a child with FAP if the doctors refused to only use my non-FAP infested eggs. I don't condemn anyone's reproductive choices, there's nothing wrong to have a child with FAP. My personal decision had just always been then that if I can't have a surrogate and only use my non-FAP eggs, then I wouldn't have a child. I've based my personal decision on two things: I'd love to be the last person in my family with this disease and end it and secondly, I don't want to risk my child going through what I have gone through with so many complications from the surgeries even though the medical techniques and procedures are much better now.

In spite of this long standing decision, baby fever started to get me. But that fever may be over as another kind of feverish feeling has started.
The last couple of weeks I've experienced a sudden change in body temperature. Although my temperature has actually been low, I've been experiencing hot flashes. I've even enjoyed being outside in 32° weather with just regular clothing on, my only complaint was that my hands were cold. I'm going to contact my doctor, some have mentioned possible thyroid issues. Which got me thinking, there's a connection between FAP and thyroid. So I started reviewing articles about FAP again. I remembered risk of thyroid cancer but I didn't remember risk of liver, pancreatic adrenal, bile duct, and even a brain cancer!

What the hell!? As if claiming our whole GI tracts isn't enough, FAP has to try to lay claim to other parts of our bodies so we can possibly develop other cancers. Who the hell thought up this disease. There's plenty of other diseases I'd rather not have, namely any of the autoimmune diseases. Now I think FAP is another lottery jackpot of diseases, symptoms and complications just waiting to happen even more.

So needless to say, this helped my over zealous baby fever to return to a low simmer.
And after a few moments of self pity, I'm not worried that maybe I have thyroid cancer. I hope I don't, but I will get it checked out and I'll update with the results. Fingers crossed!

Mod Bod

We all look at things in different ways and respond differently. Our backgrounds, experiences, and personalities shape our views and contribute to how we respond. Sometimes I think I'm in the lone though in my views. Perhaps it's hindsight from past health battles and navigating all the newbie issues. Hindsight always seems so apparent after making it through to the other side and sometimes it's hard to remember what it was like to be new with FAP. Also, I tend to just do things on my own.

I'm reminded of all this when I'm asked how do you decide who and what to share with others about health details and ostomies. I've never quite understood this question, probably because I didn't really struggle with it. I didn't tell anyone details and I actually only told a handful of people that I had an ostomy. It never crossed my mind to share a lot with others, especially if they weren't in the same health circles as myself. The only people who know all my details are my parents and my husband. I always followed the rule of share what's comfortable, that not everyone needed to know and no one didn't need to know none either. It can't be black and white, it's going to vary based on who, what and why. I found it bizarre when told stories that a child's entire class or school were told the child had an ostomy. Never understood that, but my parents also didn't openly share my health details with others either. There's no wrong or right way about sharing health information. We all share in our own ways and based on our sharing philosophies, other's will seem different and even odd to some.

Another sharing I've never been comfortable with is the open visibility of an ostomy. I don't think anyone should be ashamed of having an ostomy, it's just something I was always very modest about. I didn't think others needed to see me walking around with my pouch hanging out, I don't see the need in it. I find the social awareness campaigns, such as Uncover Ostomy, to be  very well executed in it's portrayal and ability to raise awareness of ostomies and health issues. But we each choose to raise awareness and educate others in different ways and approaches. Each approach will be best received by different groups.

I remind myself of this when I see others completing every day public activities with their ostomies visible, I know the intent and I agree with the intent. I just chose a more timid route of education. It would be nice to be less inhibited but I tend to stick to the philosophy that my health issues aren't everyone's business and not everyone needs to know everything. And those who I do share everything with probably wouldn't mind if I didn't always share everything with them either. Haha.

To each his own.

PTSD Tailspin

I don't think one ever stops having PTSD, the symptoms can be managed and even lie dormant for years but they can always be triggered again to the surface.

I was reminded of this a couple weeks ago when I attended a conference at my hospital. I parked in the public parking rather than the parking building I usually park at when I'm getting lab drawn. This was a mistake.

I walked in through the main entrance toward the elevators to head for the concourse. As I walked further into the building, closer to the elevators an overwhelming sense of anxiety and a flood of memories washed over me. These were the same elevators that had taken me to the pediatric and once women's floor so many times for almost seven years. I walked the main and the outpatient entrances countless times, past the gift shop I loved to walk to when I felt better and past the chapel. It was all too familiar and it was all coming back. I just wanted to get to the concourse where I could relax, there was nothing frightening about the concourse. With ten floors, it takes the elevators a while. As I waited, the anxiety increased until my mind kept repeating "Run, Run, Run". My body said to listen, turn around and run out of the building immediately. My feet were ancy, torn between running and waiting. I had to get control of myself before I had a panic attack. I focused on my breathing until I could get to the concourse and I made it. I was nervous until I got to my seat and tried to ignore the memories awoken that morning. By the end of the day, it was too much. I had to walk through the main entrance again to get to my car. The strain of anxiety and flashbacks were showing on my face and others could tell something was wrong. Once I was back in my car I finally released the build up from the day and sobbed, called my husband and my parents for support.

For about a week I felt the lingering effects of that day and I wasn't expecting any of it. I couldn't sleep, I woke up worrying about when I'll have to change doctors and the never ending risk of hospitalizations and what would happen to me. I cried and felt unusual anger. I missed being able to go to my therapist, who recently retired. She was my therapist since high school and understood my health and mental health struggles and helped me manage my PTSD and depression. Although my health hadn't changed, I was faced with the past and what that could mean for my future and how life changes would affect future health complications and flare ups. And it was terrifying.

We can never escape the demons of our past, but how we decide to handle what we are faced with, recognizing what we're feeling and utilizing support we can make it through each hurdle and when we're pushed into the past and the possibilities of the future.

Energy Rescue

My new order of B12 came today! Insert happy dance here. I've been unable to get B12 for over a month now due to the shortage of injectable B12. However, I convinced my doctor to change me to oral B12. Before she advised that the oral form doesn't absorb as well as injections. My aunt, who is also a colon cancer survivor, was advised by her doctor of continued recent evidence showing oral form is as effective as the injection form.
This is great news and allowed for my own experiment. I will be able to be completely compliant with oral B12 as there's no fear or pain associated with a pill and taking pills doesn't bother me, I had to get used to pills when I was taking about thirty a day. No big deal. And what's even better is this B12 is a microlozenge and is cherry flavored. Jackpot!

I chose to get my B12 from Puritan Pride but any place would do. I like Puritan though because they have great discount deals for their supplements. I bought 5 bottles for the price of 2, a total of about $25 for them all! And the more you buy, the more you save!

I've been anxious for my new B12 to arrive, I was already low and the symptoms had been worsening. It may not seem like a big deal to have low vitamins but it can be dangerous. Please take care of yourself and listen to your doctor, even when it's hard.

Low B12 common symptoms include:

• Weakness and fatigue
• Light-headedness and dizziness
• Palpitations and rapid heartbeat
• Shortness of breath
• A sore tongue that has a red, beefy appearance
• Nausea or poor appetite
• Weight loss
• Diarrhea
• Yellowish tinge to the skin and eyes 

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

• Numbness and tingling in the hands and feet
• Difficulty walking
• Muscle weakness
• Irritability
• Memory loss
• Dementia
• Depression
• Psychosis
  
  
  
  
  

Accomplished

What does it take for you to feel accomplished? Does it change day to day and place to place?
At work I keep busy and as I mark off items from my to do list I feel accomplished. But at home, I feel accomplished if I do the dishes and vacuum the house. This weekend I felt really accomplished. I did five loads of laundry, did the dishes, cleaned up clutter, and did a few errands. Is that all my life has been reduced to? Accomplishment is house chores!? Is it from lack of motivation, lack of energy, exhaustion from looking after 105 people at work, or something else or even all the above?

I'm not completely sure. Usually when I have something I need to do I can muster the energy to complete the tasks, but really only if it's scheduled and I don't really have an alternative. So is it motivation?
But I'm falling asleep without intention long before bedtime and I do have anemia and low B12, which I'm out of due to a shortage that had delayed my refills. And I only nap when my B12 or anemia have become too much. It must play a part.
At the end of the day, I don't usually want to do anything, not even something fun. Occasionally when it's nice weather and I feel good I want to go out on the town. Sometimes I'm so mentally drained, I don't have the energy to discuss my day and especially not in detail. To relive events is exhausting. Talking is draining. That's why there are long intervals sometimes in between posts. It's exhausting!

I think it's a mix. When we have to, we often muster the energy we need to participate in an activity even when we really rather rest but when we are active our body energizes itself. This is a common and helpful reaction to activity. We tend to feel better and have more energy and better mental health if we are active, even just once a day.

We're going to have good and bad days. Depending on which day our activity falls on, it may be a big accomplishment and that's ok. Take it more easy on bad days and go crazy with activity and to do lists on good days.

Here's a good, low strenuous 10 Minute Exercise to get you started on your good days.