ALS you suck and other things I love and hate.: Shit Ass Disease 3...Things I Hate

Because ALS is underfunded, patients have had no option but to fade away and die. That is not OK.
Steve Gleason

I have covered falling, cane's , rollator's and wheelchairs, now it is time to go back to falling. This Shit Ass Disease just keeps getting better and better. Well I am writing this blog from the floor. It really is funny from the perspective of anti depressants! I was sitting on the edge of the bed and started slipping off, slipping and then "Oh shit I am going all the way". Yep sitting on the floor now and the only thing close that I could reach was my computer. My husband is playing tennis and I hate to disturb him (bastard) so I reached up on the bed and grabbed a pillow and now I am writing this blog. I must admit falling down 4 steps with a full glass of wine was much better than this. I coud stand back up refill my wine glass, and get in the pool. Oh the good old days, floating hearts.

So here I sit on the floor with my computer so now I am going to bitch about this little thing called Shit Ass Disease. Things seem to be happening at a faster pace then it has been. So I say fucking great! This all started when I was watching my two year old grand daughter while her little brother was in the hospital. She wanted to do ballet and dance on our toes. I would stand on my head and spit quarters if that is what this little angle face asked me to do. Unbeknownst to me I couldn't stand on my right tippy toe. Odd. Didn't think a lot of it but made an appointment with a Podiatrist thinking it was a achilles problem. He said it wasn't torn to just exercise. That didn't work and I thought he was a little flippant about it. A friend told me about a great Podiatrist she used so I went to her. She ordered 3 MRI's and couldn't find anything. She wanted me to see a neurologist so I did that. He did a EMG (let me tell you how fun it is to be stabbed 25 times and shocked). He couldn't find anything and suggested I see a Physiatrist, that is Physiatrist not Psychiatrist, although maybe I should have seen one of those as well. So I did. She ordered 3 test which I had in a hospital. When I saw her after the test she said she couldn't see anything wrong but wanted me to have a MRI on my back, which I did. My next appointment with her she looked me square in the eyes and said, "I don't have a clue, you need to see a Neurologist. Ugh fucking ugh!!

So a few weeks later I limped into a restaurant (by now it was a pretty bad limp) to have lunch with a friend. She was so sure that her voodoo doctor could diagnose and cure my problem. I thought what the hell. She picked up the phone and made me an appointment. So I went to see said voodoo doctor. He had me lay down on a table and placed a vile of voodoo serum on me then would tap on the vile, then repeat with another vile, on and on. Then he told me I had a "fungal disease" and I needed to take certain supplements ($500 worth) and make a few tiny changes in my diet. No cheese, mushrooms, bread or sugar and sugar substitute of any kind. He might as well told me to not eat for twelve weeks. So I bought the supplements, quit eating, and followed his instructions for twelve weeks. Every week I would go see him, vile's, tapping, running his hands about 12" up and down my body ummmmmmmmmm. Now we need to add another supplement, another $300 dollars. After the twelfth week, more vile's, more hands up and down my body ummmmmmmmmm, he actually looked at me and said, "I'm feeling anger that you are not getting better". I have never wanted to punch a son of a bitch in the face so bad in my life! I went home threw the thousands of dollars of supplements in the trash and ate as much cheese and mushrooms as I could stuff in my mouth.

The limp started getting so bad that I couldn't play tennis or walk my usual 3 to 6 miles or go to the gym. So I decided to go see my orthopedic doctor that I had gone to in the past. He found a torn muscle in my calf. Finally! So he send me to physical therapy for 6 weeks which was pretty painful but it helped the torn muscle, it just didn't help the limp or the standing on my toe issue, soooooooooooo he decided to do a EMG (number two) and couldn't find anything. He ended up referring me to a Neurologist that specialized in muscle diseases. So I went and saw him. He took blood, tested my resistance with muscles, looked me in the face and said, "You have a bad disease, I don't know what it is but you have a bad disease" Great, I have know been to 8 doctors and all I know is I have a bad disease. I cried all the way home, but he referred me to Dr. Martin another Neurologist in Dallas. #9 here I come.

He started out with another EMG (#3) and couldn't really find anything so he recommended I start infusions to see if that wouldn't help. Infusions are another barrel of laughs. You go into a room full of people, they hook you up to a iv and you sit there being pumped full of platelets for 5 hours all to the tune of $5000 per infusion. After each infusion he would do another EMG. In the mean time between infusion treatments he decided I needed a few more MRI's so I had a MRI on my brain, neck, back, spine and shoulder. If the Shit Ass Disease doesn't kill me the the MRI's will for sure. He also did a spinal tap (oh my God, painful as shit) and a muscle biopsy. Now a muscle biopsy is where they take a chunk of tissue out of your leg to test. Just shoot me in the head right now! So in total I had 9 MRI's and 7 EMG's, spinal tap, muscle biopsy, pt for torn muscle for 6 weeks, 3 test from Dr. I dont have a fucking clue and 5 infusions. Then on March 27, 2014 Dr. Martin informed me I had the Shit Ass Disease. You see there is no test for the Shit Ass Disease, it is a process of elimination. My daughter was in the room when he told me (read my post on Daughter for what torture that was). Well Channa went into panic mode and decided I needed a second opinion. So she called Dr. Appel's office in Houston and made an appointment, it took 3 months to get in.

So on I went to a 3 day evaluation. The first day Dr. Appel walked into my room looked at my leg and said, "Yes you have ALS". Perfect. I still went through the evaluation, EMG, blood work, Pomologist evaluation (which the bitch told me I couldn't touch my grand babies from my waist up because they can get me sick, well screw her guess I will have to die from a cold, sleep clinic, Psychiatric evaluation, Physical Therapist evaluation, Occupational Therapist evaluation, Speech Therapist evaluation (she was a real charmer) and after all that yep you have the Shit Ass Disease.

Well it's been 2 hours and Roger Federer has walked in. Now the fun part, getting me off the floor..... OK back on the bed, that was way fun! At least I got this fun blog written! Now for a little more reality...in 75 years there has been one pill made that will extend an ALS patient with a 10% of life.
That is 2 to 5 months. Whoopie shit! 75 years!! So if you can find it in your heart please join Channa's Walk to Defeat ALS team.

Dear Friends and Family,

I am participating in the Walk to Defeat ALS® to do my part in the fight against Lou Gehrig’s Disease. Why don't you join my team? The more Walkers we have, the merrier, and the better for the mission of The ALS Association. We need people like you on my team.

Your participation in the Walk will make a difference in the lives of those affected by ALS. Think about the ways that The ALS Association has impacted those around you. The money we raise will help The ALS Association support global research, assist people with ALS, fund multidisciplinary certified clinical care centers, and foster government partnerships. Each dollar we contribute will make a difference! The ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

We need your support, so please do anything you can! If you can't join my team, please consider making a donation to support my efforts.

Thank you so much and we look forward to seeing you at the Walk!

http://webtx.alsa.org/site/TR?team_id=338770&pg=team&fr_id=11041&s_tafId=266999