Wednesday, 22 July 2009 12:41 PM
I phoned Dignitas earlier today.
That name should be changed, they are definitely not treating me with dignity. The lady who answered was a different lady to the nice lady who I spoke to about the previous two emails. This lady was very abrupt.
The lady last time followed up by phoning the physician to ask what was happening with my case. This prompted him and my case was referred to another doctor. The lady last time said by “take some time” (which they used in a letter to me) she meant weeks not months.
But this lady showed zero compassion and said they were very busy when I told her that I have not received answers to my last two pleas for more information and emphasising my suffering.
She said more time could even mean months, despite me telling her I am suffering a great deal. She did not even say she would follow up like the other lady had at an earlier stage of my case.
Dignitas is going to destroy my mom and me in this process. They aren’t this compassionate group that I once thought they were; all they are for me now is a means to an end.
They cannot just accept my money and ignore me as a member.
I have had to fight my entire life. Why am I now having to fight more? It is ridiculous. It should be known later how Dignitas treated me and how I had to fight even for this.
Sunday, 26 July 2009 3:52 PM
On what I wrote earlier. I do not feel sorry for myself in any way. I do feel cheated though. I have tried to be strong and adapt with each medical/mental/NF1 direct and indirect effect and still nothing could stop the beast from raping me further of my health, joys in my life, coping mechanisms and realistic dreams.
I do have times of anger but that is normal.
I am tired though, mostly tired and with all the fighting that I have done, which has only brought on the repeated attacks, the least I deserve is to be at sleep, because that cannot be violently raped by the beast.
My arm is becoming more and more of a problem. The tumour is growing and causing more pain. I have always tried to ignore it, with all my other problems. Now I am letting go and don’t have to pretend any more. I hope that people will realise the depth of my fighting.
They think I have this condition and ops, then I come out and they think: “He’s fine.”
The fight is constant. They will never know how hard I have to fight.
It occurred to me today that the only years of my life that were somewhat unaffected by NF were not good either. They were a few years of social rejection, bullying and loneliness.
Tuesday, 28 July 2009 4:43 PM
Living on liquids and laxatives to avoid another obstruction in my stuffed-up colon. I am so used to it that I don’t even think about the fact that I am not eating solids. Whether you eat normal food or just drink liquids like I do, having nutrition and sustenance is a privilege, a blessing in a starving world. I am deeply thankful for this blessing.
Lately, I’ve been thinking about all the normal things I used to eat when I was a child, without thought or guilt. Things my mom used to make for me with such love when she got home from a very stressful job. Things that were dished up for me when my mom and dad used to have people over for supper that I would enjoy.
I remember the tradition that I started when I was still at school, of Friday being family braai night for the three of us. I remember making my beer or garlic bread as my contribution. Bread is a very difficult thing to digest. I recall my sweet tooth and eating jelly babies by the packetful when I was young.
I remember being health focused and only eating very healthy foods. Oats, chicken, fish, roast veggies; no refined sugar, saturated or trans fats, caffeine, alcohol, red meat, artificial sweeteners, colorants. How I used to study the ingredients list on labels.
Then the colon problems started and went on over five years with hospitalisation over a number of days for monitoring with the obstruction eventually passing, followed by the dietician’s advice and anxiety over pips, peels, seeds.
And the many, many other foods which should be avoided. Then the blockages, despite following the planned food. People don’t even think about what it does in your body, never mind the health implications which some are aware of when they choose to eat something. But what trauma food can cause in your body. If anybody ever looked after their body it was me.
Now this. I just want peace. I have a Plan B that may have to be used. It will require me to be alone.
So, it is seemingly likely I will be in the position of being alone, but it will not dictate how I will spend the day with my mom.
Day by day, hour by hour, minute by minute, second by second, the nightmare will eventually end.
Sunday, 26 July 2009 11:15 AM
I took my dog for a walk this morning. I saw young families (younger than I), young couples, some with kids screeching with joy.
A triathlon event was on the go. People were running past me in their triathlon kit. Further down my walking route, a surfing contest was in progress. People there seemed so carefree, some even eating nice things to “refuel” (eating normally, people don’t even think about it).
To me solids equal the most traumatic pain and surgery. I live on liquids; I don’t care about food any more. People just chew and swallow, they
