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.

Phantom Pain

I hate when I have phantom stoma pain! I just hate it. I've lived without an ostomy for over ten years now and I still getting the feeling that I still have an ostomy, stoma and all. Last night I spent half the night in a shallow sleep rubbing at my last stoma scar because it felt like I had raw skin around my "stoma". My sleep was shallow enough that although I didn't fully wake every time I touched my scar, I did stir enough awake to realize what was happening. And the most frustrating thing is even though I could tell what reality was, the phantom pain wouldn't stop so every so often it would hit me. I even was having dreams that I still had an ostomy. Had I been in a deeper sleep I would have truly believed I still had an ostomy, it was that vivid of a pain.

This isn't a one time occurrence unfortunately. Every few months my body reminds me what once was. As if I could forget anyway!  In high school during a rough health patch I dreamt I had an ostomy still and it was so vivid that I was an emotional wreck all day, I even awoke in a panic crying. I was terrified that my straight pull thru would be taken down and replaced with an ostomy once again. That all I had worked toward had been for nothing.

I've had other phantom pains before too. I'm reminded of the pain of a central line, I can't even tell you how many I've had it's been so many. The worst was during that stent in high school when I had a central line for six months due to having to be on TPN because I wasn't allowed to eat or drink for months on account of a hole in my intestine. I finally had the central line removed when it was literally hanging by only one stitch, the rest had pulled free and were no longer there. Oh that was a constant pain, not sharp but a background pain that you couldn't forget about as the central line was slightly pulled and released with movement. To this day I still have that pain if I touch or something irritates those scars or if I start to think about it too deeply.

The same happens with my arms and hands where I have blood drawn or IVs placed. Thought or touch rings those memories and they're reawakening with phantom pain of needles.

The pain we've experienced is imprinted upon our bodies and our memories without realizing it or our consent. We are not to forget the trials we've endured. Our bodies can take us back to that moment without notice in a heartbeat. Perhaps that's not completely bad though. We remember and so we can join with others and help others endure their trials as well.

Ending the Family Cycle

At last my GI doctor appointment, my doctor gave me a study to read about colon cancer in families, who is at elevated risk and it also included FAP. It was an interesting read and I urge you to also read it when you get a chance. Preferably after you've finished reading this post ;)

The study reminded me of my own desperate need to stop this familial cycle so that I may be the last one in my family with FAP. In a Medical Angels and Demons, I discussed my gynecologist who performed the Essure sterilization procedure for me so that I may not have to worry about passing on FAP. I respect that this choice is not for everyone. For me it was though. I've seen what FAP is capable of with my grandfather, mother and myself. Others in my family have also been affected by FAP and colon cancer. I've seen the horrors and I don't want to risk that for a child of my own. My mother was diagnosed with FAP and colorectal cancer before I was even 3 months old. At 3 months, I almost lost my mother because of the FAP and cancer. I don't know if my mother would have taken the chance of passing on FAP had she known that she also had FAP and how it would affect her and me. My grandfather had already battled colon cancer prior to this and he would again battle the cancer causing FAP as I neared adulthood. After my diagnosis and surgeries in grade school, I became enraged and depressed. I blamed my mother for all the medical misfortune I experienced. Afterall, she was the one to give me FAP so in my darkened mind, it was her fault. I blamed her and my doctors for years. I was consumed by hate and despair and wanted nothing but revenge. It took me several years to accept what happened to me and to realize that it wasn't my mother's fault. It was a very tough time for her, to watch her child suffer mentally and physically because of the FAP and what it's capabilities.
That 50% chance is too great for me. In my family, the FAP polyps have increased earlier in age with each generation. That isn't to say that it would for my own child, but it's not something I wish to discover. And in the study I referred to earlier, colon cancer is still an elevated risk for first degree relatives even when it was diagnosed over the age of 60! Colon cancer isn't slowing down and I've seen enough of it.

The risk of pregnancy and childbirth for myself is also far too great. In Medical Angels and Demons, I also discussed why pregnancy and childbirth is dangerous for me. Even as a child, I  knew that pregnancy wasn't right for me. Although I didn't fully understand pregnancy and childbirth at that age, I knew it wasn't the right choice for me and it seems as if everything that has happened to me in life has helped to ensure that it would be difficult to even attempt pregnancy. And I'm absolutely fine with that!

But just because I don't want to risk having my own child with FAP doesn't mean that I'm stopping there. Because I would really like to have my own child, just not with FAP. I've researched IVF studies and have come across successful cases of individuals using IVF to only utilize eggs without FAP. Unless something changes, I have a surrogate on the wings who has agreed to undergo IVF with the fertilized egg of myself and my husband so that we may have a chance of a child. Even then it may not work due to the inability to have a guaranteed full term pregnancy and childbirth, but this is a risk I'm willing to take. There isn't any other option in my mind in order to have a biological child without FAP. We've located a fertility clinic that we're hopeful about and after harvesting eggs, we're given 6 attempts at IVF. We'll have one shot at this, and if it still doesn't work then fate has spoken. My husband and I have discussed adoption as an alternative if the IVF is unsuccessful but at this point we don't feel like it's the best choice for us. That may change though and we're open to revisiting adoption.

Right now, IVF is our plan and as hopeful as we are about it's success we know that it may only be hopes. This has been the long time plan of mine and fortunately I married someone who is on board with it. As the time approaches for us to start the IVF process, the further I'm conflicted between hopefulness and fear. I don't want to plan too much or become too hopeful as the spiral downward if those hopes are dashed would be devastating. In an effort to protect myself, at least some, I focus on the improbability of IVF working for us and I try to not think of a future with a child so that if IVF is successful with a pregnancy, then I can enjoy planning for a child's life and future. There are so many things I'd love to experience with a child, so many things I'd like to do for a child. I'd love to plan vacations, educational activities, birthday parties for a child. But until then, if I let myself escape in a bubble of hope in these fantasies, I may just be own worse torturer. And so I wait, we wait, and hope.

Should it not work out as planned, we will accept the decisions we've made and with the help of counseling move forward. It is all too great of a risk for me to allow a child of mine to live with and endure a life of FAP. Again, let me reiterate that this decision is not for everyone and I whole heartedly respect anyone else's decisions regarding their family planning without judgment.

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.

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.