I'm lucky enough to have signed a book deal to help get my FTD story out. Am working with a ghostwriter whose meeting me every week and really has a unique way of having me disclose things I wouldn't or would barely write or discuss on film. It's also helpful to me because I rarely have human contact and just speaking to someone is helpful. He is recording all of our sessions and is making copies of my documents and will be contacting many of the people involved in my life. He has 5 other contracts and I'm lucky enough for him to do "I'm Aware, I'm Unaware" without getting paid up front. A NY Publisher will make sure he gets paid and my children will see future residuals.
Feel like I've leveled off lately. Never really sure with FTD where your at. Last night I had such a bad headache I wanted to put my head in the microwave, but couldn't figure out how to close the door with my head in it. Pain killers knocked me out and here I am, better and chirpy at Starbucks. First time I've been back at Starbucks since my last blog weeks ago. Headaches are one of the unrecognized symptoms of FTD by the medical community. Most FTD'ers get then. Everyone tries something different to treat them and I've never heard of anything that makes them go away. I do have faith that someday, someone will figure out how to close that microwave door.
I used to write how I felt I was taking an FTD hit and then I'd rewire. These days it's adjusting and accepting to the new low plateau. How long will I plateau and have I actually plateaued? I've no idea. FTD marches on. I know I do feel better than weeks or months ago, but I'm definitely in worse shape. But what is bad shape and will FTD progression accelerate or give me a break and plateau. Eight months ago I was thinking of ending my life in October. Why? My psyche was being broken down by both physical and unseen progression. In the physical department, I started having swallowing/choking and balance issues. This on top of an already exhausting list of FTD revolving door symptoms. That led to deep depression and the walls of Babylon came tumbling down. So yes, I was thinking my time has come. Many with FTD want to die with dignity before we become living vegetables.. Don't want to be a burden to our families, friends or whatever we have left after driving everyone crazy for years and years. I know I have an extensive FTD enhanced Fuck Howard Glick club. Don't want to be peg fed, fully continent and left to rot alone in some facility. So the plan was for October. That course led me to decisions made that I now regret and cannot turn back.
October isn't it and I want to keep living though all of the above holds true. When is the right time and when will it be to late before I'll forget or not care about my death by living. This is a living hell we who have FTD and are aware go through. I don't know when my time is, but it's not now or anytime soon. Not fun living your life this way, but I've a purpose. To make sure whoever is reading this understands the hell that someone with FTD, there family and there friends go through. I do need to find some happiness in my life. Happiness doesn't just come knocking at your door, you've got to fight for it. Have joined a gym and have been doing 6 miles a day. At least that's getting me out and putting me around people, though actual contact with other humans is minimal. Some kind person donated money so I've new sneakers, insoles and socks. Am happy to say my feet are healing. Have sent the person a letter of thanks and I'm thanking her again now. Am also lucky to have a couple others helping me including Joe Becker, the filmmaker. I'm forever appreciative for any and all help I get.
Here's my fridge. You can see I'm eating healthy with a diet of grapes and fruit. Bought the grapes on a raincheck at 75 cents a pound. The cashier said I had to many pounds so I told her i'd take out 1 grape at a time till I reached the allowed weight. I grab bags of fruit, who weighs. Also told her she'd be beautiful once her acne cleared and she got out of adolescence. That didn't go over to well.
As far as people in my life, will there just aren't. It's nice having web friends. but that's not distant and not real life. Being alone and a prisoner of your own mind with FTD just makes shifts to depression and mood faster with no one to lean on. My mind is like a ping pong ball with focus going back and forth all the time, yet sometimes it's a slow hit up in the air before landing and back to the other side or focus.
No question that we with FTD that are aware and aren't aware of our behaviors are as hopelessly lost as the caregivers and people that try to help us. Everyone involved in FTD world is lost. We with FTD say, do and write hurtful things. We tear everything apart. Many caregivers and family member see us as showing our true feelings while blurting out, saying or writing hurtful things. I've heard people say FTD is a the ultimate truth serum. Nothing is further from the truth. We go moment to moment and don't lie, just say what we're feeling at the moment and don't hold back and usually go way, way to far. Once we get on an FTD rant and roll, there's no stopping us. Then people think we're mean or can control what we say and we can't. Yet, others think there's absolutely nothing wrong with us. FTD is the ultimate cruel, bad joke. I'm a veteran of all these battles and have lost every time. Think that's the major difference between the suffering of caregivers and those with the disease. We never can rebound or have any life. Those with the disease will keep spiraling till we're dead. How do I get over the hurt I've inflicted on others? Apathy only goes so far. I'm lost in a disheveled mind and know it. I know I'm hopeless to do anything about it. I can no longer explain to anyone, nor do I wish to about my actions. I've come to terms and am at peace with the fact I cannot change how others perceive me and my behaviors. Tired of people making up what they think is logical answers to me and FTD. There is no logic when someone is losing there mind.
Well, did all testing for the swallowing issues, x-ray testing and found out I have reflux, got an expensive prescription a week ago which I'm confused about so still haven't taken it. Now I started speech therapy and she discovered my main swallowing issues are from FTD, not reflux. So now I need new testing, swallow test or Functional Esophagram test and a whole new schedule of therapy etc. The therapist did write out a list of rules or tips. She was very sweet. One of the tips are not to eat 2 hrs before sleep. Well, it'a after 10pm, I haven't eaten since yesterday so I'm about to go out for mexican takeout :-) Nothing in the fridge and slept all day, except for the 8am appt.
Feel like I'm back on the medical merry go round nightmare with constant docs, tests, therapists coming back into view. Of course unlike my takeout food, all this medical care doesn't come with a menu. It's the good old bill after bill till your broke and dead routine. I've seen the movie before. Lost all my savings, investments and gone bankrupt from 6+ years of misdiagnosis. Now I'm back into the dilemma of returning to the medical care system of the United States of FTD or fuck this disease. I'm moving, rent is higher and I'm on the edge financially and really don't know what to do. I've zero debt and been as responsible as I can be. I don't have anywhere to cut back from. Still check my back 10-15 times a day :-) FTD is incurable, untreatable and unstoppable and the medical community has absolutely no morals in taking every penny you have for seen and unseen things.
The medical community is in it's infancy with FTD. Of course they rarely like to admit it and drive most crazy with diagnosis's and re-diagnsoses. Rare to hear the simple words, "I don't know." Most have huge ego's that need to give and answer and we as the starving desperate one's will do anything for hope. I've had enough where I don't have a neurologist or psychiatrist and won't be seeking one. No FDA approved meds, so I won't take anything except for heart etc. Won't be a gunea pig. Don't have the time or money to waste. If you have a cure, I'm first on line. Otherwise don't call me, I'll call you.
I'm moving on Saturday. That should be fun. Haven't done a thing, but it looks like I'm going to have help. Whatever happens, happens.
I admit, being alone and facing this just keeps getting harder. Just will keep doing the best I can every day for as long as I can.