Sunday, November 20, 2016

Good News, Tempered with Much Frustration

First, the good news! The booklet that I shared in my blog entry last week has been very well received. I am also thrilled that so many people are sharing it to get it out there. It took a lot of time and effort, but like I say about everything I do to share the word about FTD, if it helps even one person, it was well worth the effort! Feel free to share it with anyone you would like.

Now, on to other things. I actually hope I am getting a little paranoid because if I am not, then that means they really don't like me. Of course, since FTD, a lot of people ignore me or semi-politely listen to me and then turn away. The other possibility is that they really do think I am stupid or maybe I truly am and don't realize it.

I am so very tired of saying things to people and them ignoring me or giving me a nod acknowledging that I said something and then turning away. I am sure my intelligence does not shine through the way it used to, but I truly believe that I still have things to contribute to conversations and just to the world itself.

This doesn't happen with just strangers or casual acquaintances, it is people with whom I used to work very closely. It is family members and even some of my online friends. I try to refrain from posting much of anything on Facebook except for jokes anymore because the reactions I get are either non-existent or imply that I am stupid and should know better. It even includes people who are in the same boat as I am, those suffering from an incurable disease. Also, attending monthly luncheon meetings with the women's group from my church can be downright painful.

There used to be a woman who attended the meetings who smelled bad with odor of an unclean body and unclean clothing. She struggled with a disability that made walking difficult. I would usually sit with her or if I was not sitting with her, would at least fix her a plate of food and bring it to her before I fixed my own. Now, I feel like that woman. I am pretty sure I don't smell bad, so I can only believe that they are afraid I am contagious or that I am a hypochondriac since they have all told me that there doesn't seem to be anything wrong with me.

My reaction to those who are with me in the real world when they don't comment or even acknowledge that I have said something leaves me with a sort of feeling of total disbelief. Things like, "Did I really only think I said something?" or "Did that come out differently than my brain meant to say it to the point that it makes no sense or was offensive?" or "Am I actually losing my intelligence?" or "Am I wasting their time?" I have no clue. How do you ask someone any of those questions without insulting them? Even though I am feeling insulted, I don't want them to feel that way as well so I do not question them as to why they do it.

The bottom line is that some days, I don't even want to talk to anyone. It just doesn't seem worth opening myself up to being insulted or ignored. I feel rotten enough from dealing with this disease, I don't have the energy to deal with those who disrespect me.

Another issue that I have had enough of, is peoples' tendency to offer cures to me. "If you drank more water..." or "Have you tried B-12 therapy?" or "You must try this oil..." There is no cure for this dreadful disease. Brain cells that have died do not regenerate themselves. Do these people really believe that anyone with FTD would not have researched any possible treatments or 'magic cures'?

I saw a column in the newspaper this week that hit the nail on the head of this subject. In a doctor's column, he basically said that most of these treatments are not harmful to our bodies but that they are toxic to our minds. It is hurtful to us that these "helpful" friends believe that their intelligence is much greater than ours that they are able to know more about curing our disease than we do after endless hours of researching the subject, not to mention all the legitimate researchers. It is amazing how many people out there who truly believe that there is a vast conspiracy out there, especially "big-pharma", who are intentionally keeping these miracle cures from us. The biggest problem with this theory is that the pharmacy companies cannot be plotting to keep us dependent on their prescription drugs because there are no prescription drugs to help FTD.

This past month, I have been lobbied to go to this "diet doctor" business for his new B-12 therapy. One of the reasons was that "It only costs $100 for 6 treatments." I already get B-12 injections every four weeks and told her that. Her immediate response was "You know why you only get them every four weeks don't you? That's all the insurance companies will pay for so you aren't getting enough." I told her the problem with this theory was that I used to get the injections every two weeks, covered by insurance but the doctor and I checked my B-12 levels a few times and together decided to cut down to every 4. She responded with a look of disbelief that I can be so stupid and a comment of "Well, if you don't want to try something that will help..."

A week or two before that wondrous cure, it was this new magic oil. I was gullible enough to try that one since it was touted to ease some of the symptoms more than curing the disease itself. $150. for 4 ounces. My daughter came home from school many years ago telling me that they had taken the word "gullible" our of the dictionary. I reacted in horror... that's a real word, it has real meaning, it is still used all the time, how could they take it out of the dictionary. She still insists that now when you look up that word, my picture graces the definition.

My expensive oil gave me headaches to match the size of the price. When the person who convinced me to try it asked about how much it was helping, I mentioned the horrid headaches, worse even than normal FTD headaches and was not noticing any improvement either, and was basically told it was impossible. Yep, I imagined those headaches I guess and ignored how much better it made me feel.

When offered these "helpful suggestions" from people, it also makes many of us feel that they believe we are stupid to not know about these homespun remedies. The really stupid ones though, are the ones who are pushing these worthless suggestions on us. So, please, please, please... Even if what I am saying makes no sense, please at least acknowledge that I am speaking. Plus, if you hear about some miracle cure, even if it is made from sea life, please feel free to keep it to yourself.

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