I Am Finally Writing Again

I apologize for being missing in action for the past few weeks. I was having enough trouble getting through the days that I could not think beyond that. Why? A new symptom, of course. More about that later.

There have been a few things I have read about this past months while being MIA. I read an article about CBD oil, Many of us are using this oil to treat various things with our FTD, primarily stress. While they acknowledged that it probably helps with stress, CBD oil can interfere with prescription medicines. The most serious reactions are those medications for the heart and blood pressure.

So, please, like any over-the-counter medications or supplements, make sure you inform your doctor you are using CBD oil. Ideally, please discuss it before you start using the oil, especially if you are on any medication for heart and/or blood pressure issues.

Also, a friend who also has FTD, found an article that was extremely interesting to me. I think it is one of the best stories and explanation about FTD that I have ever seen. So, I am sharing the link to it. Please take time to read it. I might be one you will want to share with others to help them understand just what we are dealing with.

https://l.facebook.com/l.php?u=https%3A%2F%2Ftheconversation.com%2Fexplainer-how-is-frontotemporal-dementia-different-and-what-are-the-warning-signs-95436%3Ffbclid%3DIwAR3edcGbGfz3fyGNMv3JvGiP5Ya_gyYqI9Jn90l9jQMbw2T9lwLWZDpH8xs&h=AT0eewj6fVacY6zZxEilg1G8-2OPO3LFsLTiO0R-IC1882OafUvs1ObCiWdPdcTPUSfvxC5gnQwYCI8A39pbjSSh_RRMfPslkk4rWhMlnCe6LtgzDFJg12Y

Another important bit of info: The AFTD 2019 Educational Conference will be coming up in May. It is being held in Los Angeles, California. Registration will begin on January 11, 2019 and more information can be found on the AFTD website:  www.theAFTD.org

I must share that I finally found the secret to making my holidays more survivable. My daughter was home for the entire Christmas week which helped immeasurably. We limited all visits to five people or less, including ourselves. I still, with her help, prepared our traditional Christmas morning brunch. All other meals were purchased and required very little effort to prepare. Not to give free advertising, but we went to Honey Baked Ham for ham and turkey, as well as all the sides needed to make wonderful dinners for Christmas Eve and Christmas Day. I also only baked only about twelve dozen cookies in the two weeks leading up to the holiday, giving up on the 100-200 dozen I usually would do. I will admit several people showed disappointment when they did not receive cookie trays, but having FTD, there have to be limits put on to what I try to do. To not be totally out of commission for a week or more after the holidays is the best gift of all. My solutions may not have worked for everyone else, but there are ways to cut back and enjoy the holidays.

Now, back to why you have not seen any blog entries from me for the past few weeks:

I have written many times about "FTD headaches" and how debilitating they can be. I thought there could be no headache more painful than those, until now. I have developed a new kind of headache in the back of my head. I was at an appointment with my retinal specialist and when he asked where the headaches were, I showed him an area on the back of my head. His response was "You just showed me the entire area of your Occipital Lobe."

I was desperate enough for relief that I visited my family doctor. Of course, an MRI was ordered which showed nothing, not even my FTD!  How frustrating is that? A SPECT scan in 2011 clearly showed FTD, and they still see nothing on an MRI? No wonder we are so often misdiagnosed. I cannot help but wonder if there is actually nothing that shows on the MRI or if the diagnostician does not know what to look for with FTD?

Trying to figure out what was going on, my doctor gave up and insisted that I consult with a neurologist. I do not like them, Sam I am. I would rather eat green eggs and ham! I have this fear that when I see the neurologist (one whom I have not seen before) next week, she will say "There is nothing wrong, it must just be depression."  This is what I heard from other neurologists in the same practice back when I first knew something is wrong.

My sister asked if I wanted her to accompany me to the appointment. At first, I said 'No." Then I quickly changed my mind. I knew I needed to take her with me because if the doctor even started to say there was nothing wrong, I would not be able to control my reactions and have no idea what I might say or do. So, please think positive thoughts for me this week... not just for an answer and some relief, but that I don't end up locked up for assaulting a doctor.

I will make no absolutely promises, but I will attempt to get back to writing on a more regular schedule. I hope at least some people missed me rather than saying "Geez, I'm glad she stopped writing."