Mind Tricks

The mind is very powerful and there is a lot to the mind that we don't know and may never understand.

When going through any traumatic event and experience an individual tends to dissociate from the situation in order to escape and cope with the trauma. After repeated trauma, this becomes increasingly easier to do. It's a defense mechanism and even necessary to protect the psyche from further trauma. This not only distorts memories of that time but I think it affects future memory as well, not because of a physical reason or issue but out of learned tendency our minds memory ability is altered.

I'm very detail oriented and because of it I remember a lot of details and can do so for years, but not for all things. Sometimes when I look back on my life, the past feels very surreal and is merely a haze of memories that resemble looking through someone else's mind rather than my own. I have a handful of memories of life prior to my first surgery and that is all, I can only remember about 5 friends from my childhood and barely remember any events. I don't really remember events even with my family, I just know that they were there and I have a strong connection with them from times spent together, I just don't remember what those times were really. As my cognitive development progressed from child to young adult, my memory ability greatly improved but it tapers off again once a few years have passed after an event, especially the chronogical order of events. I don't think this is normal for everyone and I don't think it's a result of age. I noticed these difficulties even during my high school and college years.

 Not only does the mind allow for memories to become hazy and distorted as a matter of protection, it also allows for memories to become too realistic reminding us the past did occur. It doesn't take very much for me to recall past pains and physically feel future pain. The feeling of needles, tubes, knives, stitches, staples and all the things that accompany these instruments of healing and torture are quickly remembered and felt even years later. I physically feel the IV in my hands, the central line in my chest, the NG tube in my nose, my abdomen being pulled as muscles are used and the stitches and staples hold my body together against the force. Even now, thinking of the words to type is issuing a call to the past and those demons are clawing at the door to flood my body and mind with those memories and that pain. Before any medical procedure, test or even shot, I have to mentally prepare myself for it and the pain that is to be inflicted - that pain that is all too familiar, at times changing, but never forgotten.

The mind can trick us into false senses of security or can rip us from our safety and plunge us back into tortured memories of the past and the mind brings along our physical body for the ride. That seems to be part of the game though, it's a constant balancing act we must play to maintain sanity during an insane trauma.

Medication Mix Up

I've been getting brand name Lomotil for years now for my SBS. In high school, I had to take 8 tablets a day - the max amount as well as Sandostatin injections in attempts to control the SBS. After about a year or more, my SBS started to become better controlled. I started taking the generic form of Lomotil until the formula changed and I was forced to use the brand name and have been doing so for years now. Well...I got a new order for my Lomotil and forgot to mark not to substitute for generic, and so I ended up with bottles of the generic form. What a headache trying to get this corrected! My mail order pharmacy wouldn't exchange the medication, although they offered to dispose of the medication for me...because evidently I wouldn't know how to flush a toilet. But that's besides the point, the real problem was yet to come. The mail order pharmacist said she would change the order to brand name and send me brand name medication. She did not tell me, even when asked, that actually a new order would be required and would be faxed to my doctor's office to be completed.
Unbeknownst to me, an order request was sent to my doctor's office and because I didn't know this, I wasn't able to warn or notify my doctor's office and ensure it was written correctly. Because anyone with any experience in the medical field, as a patient or employee, knows that a nurse typically writes the orders and obtains the doctor's signature and most doctors trust their nurses and will sign almost anything placed in front of them. Well...my doctor's nurse isn't the best to trust for this evidently. Because I ended up with exactly a 23 day supply for brand name medication with 5 refills instead of a 90 day supply and without any extra medication. My doctor writes my medication order for the max, in case I need more than what I normally take, so I'm usually actually able to stretch a 3 month supply to last me 6 months, thereby saving me more money. Well, this 23 day supply bottle at  a time cost me twice the amount of the actual 6 month supply my doctor writes for me. See why I was livid!?

Some good did come of this outside of me being forced to spend way more money than I normally do. I tried taking the generic medication to see if it would work for me again. And to my surpise and an unknown reason, I've actually been able to not only take the generic medication, but have been able to decrease to only taking 1 or 2 pills a day! I can't believe it and it makes no sense because I require no less than 4 pills of the brand name in order to function, which is a stronger medication than the generic.
So I'm hoping that this trend will continue and I'll be able to return to the generic form and next time I need a new order, I'll be able to intercept the nurse and prevent her costing me an extreme amount of money.

The lesson? Always remain involved in your own healthcare, communicate at all times with not only your doctor but the doctor's office staff, it doesn't hurt to try changing up your medication sometimes, and sometimes no matter the situation, you're going to get screwed over a bit but that doesn't mean you can't or won't come out on top in the end.

Thanks of Health

I'm going to fall into line for the Thanksgiving holiday and review blessings received. I've discussed in several earlier posts about the journey I've overcome with my health and the ongoing issues that plague my days and the countless blessings I've received to endure. So I'm not going to go over those yet again.

What I am going to do though is encourage you to remember your own blessings, your own journey and struggles.
Every day is a new day and no matter what your previous days have been like, it doesn't mean that the future days will be same. That's true for good and bad days. We never know what will happen, we can only prepare ourselves for the best and the worst. Through our actions to do the best we can with any given situation and complete precautionary steps to prepare and prevent, we are most apt to deal with any event. We can't just sit back and expect something to happen or to change, we must make the change ourselves. It is not fair or right to expect anyone else to make the change for us. Like so many things, it starts from within ourselves and with us.
Whether you're struggling with finances, coping, or physical health - none of it will change on it's own. You must take a step to force the change process forward. Ask for assistance, information, support and rediscover your own strength and resourcefulness. Support networks are there for individuals to provide support and encouragement, not to take over one's life.

Now I realize this probably sounds like a subconscious rant or scolding, but that's not my intent. Looking back through my experiences, I'm very thankful for those that helped guide me on my journey, who encouraged me to take that next step and I'm grateful that these individuals didn't enable me to give up on directing my own life.
Every struggle is an opportunity for something to change, recognize this and make every attempt to discover what changes can be made to improve the situation and you will glad for it later on. Life is many times a trial and error experience, we must adapt and change in order to stay in the game. We've evolved this way and because of it, we can do just that.

When you meet your next struggle, take a deep breath and calm yourself so that you may re-examine it through a clearer view and mind. Remember your support network and your own inner strength, this combination is very powerful to enable the adaptation and growth for survival.
And that is something to be very grateful for in life.

Complicated Symptoms

I'm not sure if it's just my perception of my health or if it's actual reality but I view my health symptoms as a product of complications that originally started with FAP, not as symptoms of FAP. In the beginning, I explained what FAP is and my experience in general of FAP. Allow me to clarify how I classify the symptoms from FAP and complications. The cancerous polyps and the resulting surgeries were because of FAP, but the complications from surgeries were not because of FAP. I don't view my bowel issues as a problem because of my FAP but instead it's a result of complications from surgeries that I initially had because of FAP. If I had not had surgery complications, I very likely wouldn't have the SBS. So although it is a distant effect of FAP, it is not directly caused by FAP.

Because of this distinction I become ever so slightly vexed when I'm asked if such and such issue is because of my FAP. I suppose you could technically consider symptoms as such, but I don't and I'm not going to blame things on FAP disease that aren't directly caused by it. Doing so is like milking the disease and falsifying information. FAP sucks and is a horrible disease, but by itself it isn't necessarily such a god awful disease. Yea you're guaranteed to develop cancer at some point, but caught early enough is easily treated and likely will only require surgery as treatment option. I view desmoid tumors, although benign, as the 2nd worst symptom or effect of FAP because of the effects on other body parts and organs, especially if the tumors are inoperable.
I don't know why I'm touchy about this, but for whatever reason it irritates me and I prefer the distinction to be acknowledged. To me, it's a simple distinction that doesn't need to be muddied or misidentified. That doesn't help matters, it doesn't help the public understanding of FAP and it doesn't help the individual with FAP. FAP isn't a well known disease, it's a rare disease and the majority of people have never heard of it. Misguided information won't raise awareness, just myths.

Awareness is important for public knowledge, higher rates of screenings to detect cancer early, and increased funding for research of the genetics, treatments and cures. There isn't a whole lot known about FAP in comparison to non-rare diseases and there isn't very much research on FAP. If we want this to change, we're going to have to work together to increase educated awareness and provide valid reasoning for research.

Death Warp

In an earlier post I wrote about how chronic life threatening illness warps your mind and I started thinking about how else my mind has been warped over the years. It brought me back to an earlier realization that my warped mind has re-warped itself in the aspect of accepting death since I've married. Prior to marriage, I would have been fine dying any day, any time and wouldn't have thought much about it. I had decided if I were to develop cancer again that I wouldn't undergo any treatment again. This may sound as though I had given up on life or was extremely depressed. I had just accepted the inevitable that I cheated years before.

But something  happened, I found my soul mate and yet again some of my life views changed, contrary to what my life views had been for so many years. Life with my husband has provided new hope and new dreams for the future which in turn has led to altered life views. Although I am still adamant about being the first to die within my immediate family, I am not as ready to die as quickly as before. I believe if I were diagnosed with cancer again that I'd agree to undergo treatment, although I may not complete the treatment depending on the quality of life. I still don't believe I'd agree to aggressive treatment for any disease until the absolute end. At some point, I believe I'd defer to palliative care once the quality of life began to become unbearable. I acknowledge that of course, one can't truly know what one would decide to do until faced with such decisions. Especially as times have changed and new hope is given.
My views have changed even to the point that if I were to outlive my husband (absolutely fearful of this occurring) and we have children that I would try to continue life for our children, who hopefully would be adult children at that point if such a horrific tragedy should occur.
Even though I have new hope and dreams for our future, such life view alterations instills more fear as I may decide to fight off death longer than previously believed. The increased fear resides in the ever flowing fear of not being the first to die in my immediate family. I do not want to outlive my parents, and especially my husband. Life has been very hard for me and is quite terrifying to me. These 3 individuals are my rock, my salvation and the thought of losing even one of these most dear persons floods my heart and soul with horrified pain.
To further complicate such life decisions, I am now an adult with the decision making ability over my own life whereas as a child, when my health was at its worst, my parents made these decisions for me and I was not to question or object to their decisions or the treatments or procedures. I have more strength in my own decisions now and perhaps as a measure of rebellion or a statement of mere exhaustion, am defiant to recommended procedures or tests and if needed, may even be defiant to treatments.
Even with these life changes, I hope for the simple solutions so that I will never have to face such decisions and I will go peacefully in my sleep one night before the rest in my immediate family.
As always, we are left with only hopes in the end. Whatever our choices, some things in life are simply out of our control and we must take the best course we believe through life and hope for the best.