I was walking through the Indy airport and saw her book. Very exciting.
It’s Saturday morning and I woke and with a sinus or what I think is a sinus headache. I had been hoping that is would just resolve itself, but this has not proven to be the case, so I have taken some action to get this thing under control.
I used a Neti pot to clear everything out, it’s the most awesome device for dealing with sinuses, I put some Vicks in my nose and took a couple of Advil and a cup of coffee. The coffee is for the soul, and it not part of the campaign against my sinuses. I like using military terms when talking about my overall health it makes it sound so much more, I don’t know… urgent.
I am continuing to battle with fatigue and am sleeping a lot and taking naps. I either have fatigue or I am transforming into a cat. I eat, sleep, look at stuff and walk around like I own the world and am master of my domain. The metamorphism has started. I hope I get a tail.
Susie and I volunteer at the Pit Bull rescue, and it was our first time doing it solo. We are a great team and rocked everything out like a BOSS, then it was off to see a friends Art show. Actually Donald (Scribe) and Alisa had two shows. Donald’s was upstairs and Alisa’a was downstairs.
Each show was wonderful, and Susie purchased a drawing of Donald’s. I think is maybe the best birthday present ever. I think might go back and get a piece of Alisa’s, there was something of hers that I just loved.
Phyiscal therapy is going well. I am squeezing and bending stuff to try and get my left hand stronger and I just need to be patience.
For everyone that has been wondering about the state of my bottom. It is doing well, I followed the advise of my Aunt and the probiotics she recommended had been doing their magic. So the itch that would never die has been replaced my the crackling headache from hell. Seems like a fair trade since on like to have diversity in my malady’s.
I am grateful for both, because that means I am alive and kicking. Death makes you grateful for everything.
Now I will return to the mundance, Susie and I ate dinner at Fric and Frac’s. They have a weekly Friday night special of KC steak. Yum and then off to Miami Ice for ice cream. Ice Cream is my weakness and somehow fills that small hole of longing inside of me.
We finally saw Mission Impossible and enjoyed a romp through the improbable and outlandish.
Today the agenda is open. Susie is sleeping and all the animals have been feed. Tranquillity covers us like a blanket. I have no new symptoms to report and the Vick’s is doing its job.
Last Monday I had a follow-up appointment with my neurologist Dr. McVey. She is the KU Medical doctor that I have been seeing. Susie and I reviewed with her what has been going on, and we looked over the test results from Mayo again.
The good news is that I have no new symptoms, accept the ones that can be explained by the surgery. My index finger and middle finger have lost some strength, which might just be normal, and I continue to have pins and needles in my left hand and arm. It might take as long as two years for this to heal up.
I am going to do some physiotherapy with the arm and this should bring back some strength. So here is the bottom line. If I have no new symptoms in the next five to six months I am out of the woods.
I gave Dr. McVey a big hug, and that’s unusual for me because I am not a big hugger. I figured she needed a hug because she told me I was dying and while I am dying it is at a much slower rate they she predicted.
A few take a ways I learnt from this experience.
1. People are much nicer to you when they think you are dying.
2. Diet and exercise doesn’t seem as important as having an ice cream.
3. Shit just doesn’t matter.
4. I better be present in this life because one day it going to end and I should enjoy the ride.
This week I finished Jenny Lawson’s book Furiously Happy and it’s a recommended read if you think you are bat-shit crazy. Normal people can read it too.
My Aunt asked me to give a general update on how I’m doing, and normally I try to write something informative and positive, but I’m kind of “SCREW THAT” I’m feeling shitty, my left hand seems to be getting weaker. I am tired most of the time and sometimes I am blind with tiredness. I become so exhausted that just want to lay and not get up.
Last night Susie asked me to get her some water and I said no, and then walked upstairs and fell asleep in my clothes. I woke up 12 hours later. I get irritable, not the normal kind of irritable but the type that I would describe as stabby, mean and nasty kind of irritable. The kind you have to apologize for the next day, it’s embarrassing.
Boomer (our dog) shit in the kitchen this morning. Actually a decoy shit because he had shit again on a brown rug that I didn’t see and stepped in. It was such a huge poo that it went over the edge of my Birkenstocks. He’s a good boy, but it was a hard way to wake up. Everything is cleaned up and I am airing out the house.
My throat is sore and my tongue still deviates to the left. My voice is hoarse and in the back of my mind I am terrified that my next symptom might be the loss of my voice.
There are days I wake where my whole body aches, and then there are days I wake feeling just fine. It’s not exercise related, it just appears to be random. I once was so fit, now there are days when walking up the stair just hurts.
My left arm twitches constantly, the nerve is always firing in my forearm. It has become so constant that I don’t notice it anymore. I have constant pins and needles in my left hand and my arm aches and hurts like hell if I bump my elbow, which I do constantly.
My lower intestines have revolted and it is as if someone has rubbed my anus with poison ivy. It might be related to my change in diet or something else like stress. Who knows what the cause is but what I do know is that I can’t walk around scratching my ass all the time.
So today I feel low in body, mind, and spirit and all I want to do is eat ice cream.
As I go through this process of waiting to see if another symptom might emerge to help with the diagnosis there are days I feel fine and I think it is all behind me and there are days like today where I feel there is a sickness lurking inside me like an inky shadow.
ALS Diary May 24, 2015
Today Susie and I are packing to go back up to Mayo for testing. I am scheduled to do another EMG test on Tuesday morning at 8:00 am. This is the third time that I have taken the test. I woke this morning and yesterday morning anxious and depressed knowing what the test entails. The test is long and painful, and it’s always uncertain what they might find. Last time they found a problem with the ulnar nerve, and hopefully the test results remain the same.
Susie and I will be meeting with the neuro surgeon and my neurologist to talk about the options with my arm. We are not sure what they might recommend, but we are both concerned that they are focusing only on this one area without taking into consideration the totality of the symptoms. This is a common trait with doctors, and we both want to make sure that we take time to consider all of my options and symptoms.
The other treatment that is available is called IVIG, the link is belong if you are interested in the medical details. (http://en.wikipedia.org/wiki/Intravenous_immunoglobulin)
Work has been extraordinarily stressful over the last week and it has exacerbated my symptoms, especially in the evening and during the night. I am very fatigued at the moment and during the weekend I have very little energy to do anything. Susie has been wonderful letting just veg on the couch.
Home is a sanctuary for me; I am reluctant to go out unless we have something planned. Home is where I can restore, relax and recover.
I wanted to tell you how grateful for everyone’s kind words and positive thoughts. I feel supported loved. I am grateful for my health. The trick for me is to stay in the present moment, and to take this process one day at a time.
May 2nd ALS update
This week I had an appointment with my new cardiologist. The reason for the change is that my last doctor was of the opinion I needed to take a statin and move on. One of the rare side effects of the medicine that I was taking is muscle atrophy, and since this is what I have going on in my left hand it made sense for me to stop taking this medication.
Dr. O’Keefe is a research cardiologist, I guess that means that he conducts studies and writes papers as well as his regular practice. Susie and I explain where I was health wise, and share with him that since I had gone off the heart medication my cholesterol has rocketed to 356 it was 149. He looked at my CT scan that looks at the calcium build up in the heart and my level is high, but did not seemed to give him much concern.
He was overall looking at the inflammation in my body and wanted to control that first before putting me back on medication. What he has suggested, was to go on the paleo diet. The rational is that we should eat more like what people ate 2.5 million years rather than how we have eaten for the last 10,000 years and more specifically how we are eating in the 21st century. Logically this makes a certain amount of sense, and I am open to try anything if it might help my condition.
So I started the diet about 4 days ago. I have lost 3 pounds which is weird and I feel really good. I think the twitching is reduced and my overall well being has improved dramatically. The diet is pretty simple and not to exciting, but how exciting was eating 2.5 million years ago?
Things I don’t eat are grains, flour, legumes or anything processed of packaged. What I do eat is nuts, fruit, vegetables, meat and fish. What is strange is if I follow the mantra “If man made it then don’t eat it.” the grocery store becomes very, very small.
Dr. O’Keefe has done a Ted talk that is worth checking out and the other Ted talk he recommended that I watch was by Dr. Wahl. She is a doctor that was diagnosed with MS and she gives a talk about her journey and how she finally decided to treat herself. They both can be found on Youtube and are worth the 18 minute time commitment.
So that’s the update. Not to much else to report. As I learn more I will let you know.
Its been a couple of days since I posted anything. Susie has been sick with what sounds like bronchitis, and has been feeling miserable, so we have just hung around the hotel room and tried to relaxed. Yesterday I had my final MRI, it lasted about 2 an a half hours. This means remaining immobile while they scanned my body, since I have spent years in front of a television not moving this was the easiest part of all my weeklong procedures.
I will share the wrestling match I had with my insurance company getting approval for the MRI, it’s not every interesting, but it is therapy for me. It started off with the best minds in neurology at the Mayo Clinic saying that I need an MRI. It then goes to my insurance company, they stated that I needed to get approval from them before they were going to pay, and actually they were not going to decide they prefer to farm this work out to a third party, and a nurse in a cubicle or a doctor in an adjoining cubicle look over they request and are the final authority if you will get this test or not. Oh and by the way, we are going to take our sweet time about it because even though this is a life threatening condition and has been tormenting you and your wife for months we don’t care. We are going to treat you with no more compassion than the DMV and read verbatim from the customer service manual that was written by an accountant. We are going to say things like, “We have 24 hours to review your case before we make a decision” or “There are lots of other people ahead of you.” or “You will need to get your Doctor to call us.” and my favorite robotic-mind fucking-souless-babble “Is there anything else I can help you with today.”
Yes there is, I pray that one day you are sitting on the phone with my condition, and someone like you is sitting on the other end of the phone reciting the same exact words you are saying to me. I think that is the only way you would have any understanding of how helpless, powerless and frustrating this medical system can make you feel at times.
The system is so broken I am calling it the Humpty Dumpty experience.
On the bright side the Mayo Clinic is awesome, the people are wonderful, kind and caring. It has been an outstanding experience and I cannot say enough good things about them. I am grateful to be living so close that Susie and I can drive and that we live so close to the KU Med.
Susie and I meet with the Neurologist this afternoon and he will be going over all the tests and sharing his findings and final thoughts. I will update you tomorrow once we get back into Kansas City.
Susie has put together a summary of today. It is very good news. See below
He’s gone through the ringer of tests here at Mayo and the doctor said that while it might be early ALS, there is a currently a greater chance that it is either his ulnar nerve getting pinched / having a cyst, etc or that it is multifocal motor neuropathy which I think also involves an infection and they use IVIG to help it. He goes in tomorrow for an MRI of his arm and on monday for an mri of his head/neck/etc. and then we meet with the doctor on Tuesday. Hopefully will have some more info then.