I am guilty of not journaling lately but my mind has felt like Dorothy in the Tornado scene of “The Wizard of OZ”- complete with flying cows and witches. Things have finally settled down. My Social Security and Long Term Disability were all approved on the same day last week and I have already received my first Social Security payment. God blessed us many times last week. We also had a very successful fundraiser on Sunday Feb. 4. It was like we were having our wedding reception again, the Irish music, the people getting on stage to sing, friends traveling from all over – except there was more people at this event than our wedding reception! The restaurant graciously provided free food and they would earn their money from the bar. We ran out of food because our friends didn’t expect that many people. My family was absent of course – my social worker wants me to start dealing with that! Childhood, college, as well as current friends came and of course all the in-laws (believe me – there are many!). Between all these good things happening and the 20mg of Celexa, I feel great mentally.
I had a nice chat last night in the PLWP chat room at Yahoo and one person commented on how she enjoys reading my journal. I always felt a little awkward as I am trained in science to tell the facts and not trained to be creative (probably would of got my butt kicked out of Pharmacy School for embellishing lab reports by the Dean – bad enough me and my Fraternity Brothers were caught drinking on the Pharmacy School roof that one time – being the president of our Fraternity I got enough butt kicking by the profs that week!). That was a little ego booster that I needed to hear – hey, I’m only human!
My father went in to the hospital Friday to have a simple hand operation and ended up staying for 2 nights. His blood pressure skyrocketed and he apparently had a seizure. Now I have to worry about him. He’s in the hands of my two sisters who, like my Mom, live and breathe what the doctors say. Both Siobhan and I thought he was slurring terribly and should have a neurological consult – what do we know – we’re only in the medical profession! This is not a case where I want to be able to tell my sister’s “I told you so” but the same thing happened when my mother was sick last spring. We would suggest something be done – they’d pooh-pooh it. Then the next day when the doctor suggested the same idea they thought the doctor sat at the right hand of God. Well I pray hard for my father, as I cannot be around as I used to.
“Finding a New General Practitioner” A very long story but a short one act play By Tim Foley
This has always been one of my least favorite medical things to do. I’d rather under go another lumbar puncture. My Neurologist has been hounding me since Day One to find a new general practitioner who will spend more than 5 minutes per visit with me. After going through all the doctors in our part of Fairfield County, we narrowed down a small few. Our main criteria were compassion and knowledge. Thank God between Dr. Anthony, my wife – the nurse, and yours truly – the pharmacist, we all had some dealing with each doctor suggested. Then he thought it wise to have a general practitioner who is a pulmonologist as well. Thus, we threw away our old list and had whopping three doctors to choose from. Not only did they have to be compassionate and knowledgeable but also have privileges at the same hospital as Dr. Anthony. One we eliminated because we all disliked him, another one I had fought with several times as a pharmacist. Seven years ago, this same doctor was called in for a consult after I had spent 7 days in the hospital to see why I could not breath. He found that my blood pressure medicine, Vasotec, was causing laryngeal swelling – a very unusual but not unheard of side effect. He had my vote because I know he treated his patients with dignity and he was very intelligent – just no the kind of man you would want as a friend. Dr. Anthony suggested Dr. A (the A stands for something – just guess). He said Dr. A was very intelligent and seemed like a nice man. He called Dr. A to fill him in on my situation and that I needed a GP/pulmonologist not only for now but for the future when tracheotomies and PEG tubes are called for.
Today Siobhan and I went to meet Dr. A. We already had a problem to discuss with him. I have been following my wife’s Weight Watchers regimen therefore loosing weight. I had gain 40 pounds on Requip which caused my weight controlled Diabetes to flair up. Now that I was loosing weight, my medicine should be decreased. Yesterday I became hypoglycemic for the first time in my life. Having both the PD symptoms and the hypoglycemia is quite a site to behold. Shaking and body trembling, weak in the knees, pail skin, cold sweat, clammy skin, and just about ready to pass out, I hollered for my personal nurse. Siobhan grabbed the Snicker’s bar out of Sara’s hand, broke me off a small piece, (heaven – after eating good stuff for the previous 4 weeks) and gave me a cup of Aidan’s juice. An hour later, I felt better but exhausted so I headed off to bed early.
After waiting two hours in the sweltering hot overcrowded waiting room while Dr A triple booked himself and spent twenty minutes with three drug reps. He came in, Doesn’t say Hi, nor make eye contact with the Foleys.
DR A: “I’ve heard a little about you and you missed your last appointment here.” [He walks straight to the table and starts scribbling notes]
SIOBHAN: [defensively] He couldn’t walk the day of his last appointment.”
[At this point Dr A grunts]
[Right then Tim knew he wasn’t anywhere near the doctor he looking for.]
DR A: “So I understand you have some neurological disorder but they don’t know what it is.”
TIM: “ I was diagnosed in February of last year with Parkinson’s Disease but due to a rapid decline and other symptoms occurring Dr. Anthony and Dr. Marek at Yale re-diagnosed me with Multi Symptom Atrophy.”
Dr A: “I have no idea what that is.”
[Scribbling more notes and writing up a lab order for a CBC, thyroid and urinalysis he concludes the meeting]
SIOBHAN: “I’ve heard you yell a lot at the nurses at St. Vincent’s. Do you think that’s necessary?”
DR A: “Sometimes I yell in the heat of things, not at any one particular nurse.”
SIOBHAN: “If I call you with a question that may seem stupid to you but important to me are you going to get angry? Because we’re looking for someone who’s in this to the very end. In the end it will just be me, a neurologist and a pulmonologist – Tim won’t have much say at that point.”
[Not a pleasant thought but the actors portraying patient and wife have really come to grips with the diagnosis]
DR A: “It depends upon my mood. If I’m in a bad mood I may get ticked off.”
[Imagine if you will – at this point the - music from “The Price is Right” when a player loses]
SIOBHAN: “That’s all I need to hear. You aren’t the man for us.”
DR A: “Your trying to tell me if you’re in a bad mood you wouldn’t take it out on me.”
SIOBHAN: “I can guarantee it!”
Dr A: “Well, that’s your decision”
[Leaving the room he shakes Tim’s hand and slaps him on the knee. Siobhan proceeds to rip up the lab work and Tim throws away the diagnosis sheet to hand to the front desk. Leaving, they discuss talking with the Doctor who resolved Tim’s respiratory problem seven years ago]
I decided today after debating whether to journal or not any more, I decided that I would take some time off away from my usual Internet activity. After 3 weeks of being somewhat stabilized by my Permax I am on the decline again. I have been under extreme stress for several months now and after one problem resolves itself two more show up in its place. This week started out with a summons from the court that Ford Motor was suing me. We turned in two cars. They have resold them according to their standards and I owe them $15,000 which includes their lawyer fees. Siobhan called several people at Ford including Mr. Jacques Nassar, the President of Ford for forgiveness of the loan. Unfortunately he has his crew around him that protect him and the woman Siobhan spoke to said we would have to take this up with Ford Motor Credit, which of course is owned by Ford so why couldn’t she help us. After many phone calls, Siobhan got nowhere so we had to retain a lawyer for $1000. Our lawyer called their lawyers and explained my situation with no sympathy given in return. So he is working on a deal with the monthly payments. We tried to do this prior but they would not listen to us. It cost me at least $1000 to do what I could have done. That’s just the first car. The second car had not been turned over to the lawyers yet but my IRS refund plus $100 per month over the next 21 months will be theirs for the second car. I was going to use the IRS money to take the kids to Disney this year before I progress any further. They do not know that I no longer have the money to take them.
My father has been admitted to the hospital twice this month and he just recently had stents put in to replace his renal arteries to his kidney. This led to a fight with my two sisters and we are no longer talking due to the fact they leave me out of everything. I am 200 miles away so I worried for 3 hours, called the hospital and found out his Surgery had been delayed by 3 hours. They could have called. Then they have my brother in law call me after the surgery instead of one of them calling. I give up. They seem to not care about me.
There have been many other things going on that I either care not to discuss or would prefer to keep in my own mind that have stressed me out lately. Insurance problems, money problems, the jerk who bought the land around us and more.
I am tired of being sick. MSA is like having PD except everything is in fast forward mode. An increasing thought in my mind is that not only will I not see my children get married but also I would be beating the odds by just hoping to see my daughter graduate from high school. When you are told you have 3 to 5 years to live you try and block those things out but they occasionally pop back in your head. I pray they find a cure for PD so one day they can’t start doing some research on MSA. I’ve gotten 3 or 4 decent days out of this month and am thankful for that. I will journal again when I am up to it. I am available through email but will be staying off all of the instant messengers as much as possible.
We ended the day with a zoning meeting concerning the property around us. The evil developer wants to change it from residential to Business/ Commercial zoning (at which point he would buy our house. Well his presentation to zoning was awful and he answered none of the neighbors’ concerns. I was one of two people to stand up in support of his proposal. We only made two enemies – one of the town’s state representatives who put on a grand show and said how nice and clean the area around our property was. And a man who said we weren’t concerned about our town. Siobhan confronted both after the meeting and the man apologized. The rep asked Siobhan if Siobhan knew who she was. Siobhan replied yes and asked her come springtime if she was going to help clean up all the garbage on the 7 acres that surround us. Her response was that she was a lawyer. Siobhan’s response was that she didn’t give a rat’s ass about that, that Siobhan was a nurse and I was a Pharmacist. The woman would no longer speak to Siobhan. Basically she was putting on a show for her constituents. I didn’t vote for her and I won’t in the next election either.
Homecare has been in and out all week, Physical Therapist, Occupational Therapist, Home Health Aid, and Social worker. My insurance has approved them for 1 visit each and the Fred the Home Health aid for 1 week. My doctor and Occupational Therapist are going to call and give them hell. Fred the Aid is great. He helps me get ready in the morning so my wife can concentrate on Aidan and run errands. He helps me get in and out of the shower, shaves me (usually I go days without shaving due to my tremors) and helps me get dressed. I felt embarrassed this morning asking him to open the toothpaste but he replied “That’s what I’m here for.” He picks up the laundry off the floor and even empties the bathroom wastebasket. Actually it’s nice to have him here for an hour just to talk to.