Ok, so I crashed again.¬† Being fromNew York, I am not good about ‚Äúpacing‚ÄĚ myself and the doctors keep preaching it to me.¬† If I get a burst of energy, I rush around trying to get everything I want done and then fall into bed totally exhausted where I spend the next few days.¬† This time I was down for more than 3 days, and on the fourth day, I earned myself a visit to the local ER.¬† Unfortunately, with MSA, your body doesn‚Äôt react as others do and symptoms get out of hand in a hurry.
There is so much I have accomplished on my bucket list, but that just leads to more I need to do.¬† The main thing on my list was to make sure that Susan had a house with no mortgage.¬† To do that, we bought a foreclosure.¬† But as everyone knows, foreclosures come with their own set of problems.¬† The entire interior of the house needed to be refinished, and there was no bathroom, downstairs at all, just an empty room with pipes.¬†¬† Over the past 6 months, we have made the inside our home, with just a few decorating touch-ups still needing to be done.
The outside is another issue.¬† It had not been taken care of, so brush was growing up everywhere and with three large trees, there were lots of leaves to rake.¬† We have finally cut down the brush and almost gotten rid of all the leaves.¬† I am so thankful that this city has curbside leaf pick-up.¬† That was very helpful in getting rid of the leaves in the front and side yards.¬† Now we are tackling the back.¬† It is a small backyard since we are on a corner lot.¬† There were lots of bushes overgrowing the back fence that I trimmed and when it was done, we uncovered a working small manufactured pond.¬† Aha!¬† Finally, an explanation for that awful smell!¬† ¬†¬†There were lots of large rocks.¬† I have cleaned all that nasty water out and reset the rocks around the pond in to some semblance of order.
Then we found out that our local McDonald‚Äôs was being torn down and rebuilt.¬† Once while driving through the drive-thru for one of my daily cups of coffee, (McD‚Äôs has the best coffee in the area), Susan mentioned if they were going to tear down the building, she wanted the small tree she admired in the drive thru.¬† Well, anyone who knows me knows if Susan wants something, I‚Äôm going to do whatever I can to get it for her.¬† Angelina and I stopped in and spoke with management about the tree.¬† They were happy to let me have it and told me to stop by and get it on a particular day.¬† Well that day came and Angelina and I went to get the tree.¬† Now you have to picture this. We are going to go pick up this tree in a 2005 Mitsubishi Spyder Eclipse convertible!¬† This tree appeared very small as we drove by it day in and day out.¬† And I expected that they would have had the bulldozers to have yanked it out of the ground.¬† No.¬† They thought I was going to dig it out. And I did.¬† With a shovel.¬† Except for this one tough root that I had Angelina go home and get the saws-all for.¬† It was no longer a problem.
Then poor Angelina and I had to lift this tree, roots, dirt and all, into the back seat of the car.¬† Not fun.¬† This tree no longer seemed so small.¬† And the branches hung out all over the car.¬† A Kettering Police Officer drove by and just looked at us.¬† Apparently there is no law against driving with a tree in your car.¬† We got it home and unloaded in the garage.¬† It looked like a woman in a large hoop skirt had fallen with her skirt was over her head.¬† The branches took up the entire inside of a 2¬Ĺ car garage.¬† But, Susan has her tree.
It is activities such as this, things I know I shouldn‚Äôt do, that lead to my crashes.¬† This week was no different.¬† I kept going, going and going and on Tuesday I crashed.¬† Flat on my back, in bed, no strength to get up, and dizzy when I got up to stand up.¬† My blood pressure would fluctuate anywhere from 76/42 to 103/57.¬† I slept all day and all night for two days.¬† Susan and Angelina told me there were times I would have conversations with them, but I have no recollection of anything.
Friday morning I thought I felt better and got out of bed to start my day.¬† But I still didn‚Äôt feel right.¬† I could feel something was wrong.¬† Susan took my blood pressure and it was back within normal range for me.¬† She gave me a kiss, told me to rest, and went off to work.¬† Angelina would be home with me today.
Angelina noticed when she first saw me that I was swaying a little when I walked.¬† She also noticed when I spoke, my speech was slurred.¬† And when I tried to talk, my tongue would fall to the left.¬† She called her Mother and asked for advice.¬† Susan called the medics.
They arrived and took my vital signs and evaluated my condition.¬† I explained to them in my best, slurred speech, swollen tongue feeling that I could feel my pulse in my neck very strongly, enough it was very uncomfortable.¬† They decided the best course of treatment was to take me to the emergency room.
By the time I arrived, I was in and out of consciousness and had no muscle control of my arms or legs.¬† When the nurses asked me to grab the side rails of the bed, I couldn‚Äôt even do that simple task.¬† They immediately hooked me up to the monitors and drew blood.¬† Bottom line was due to the crash I was severely dehydrated and it was causing symptoms similar to a TIA, or rather, a series of TIAs.¬† After some fluids, I felt better, not quite up to full steam, but at least able to stand upright again.¬† Saturday I went to bed a 3:30 in the afternoon and didn‚Äôt get up until 6:30 a.m., thinking it was Saturday evening.¬† A whole week lost.
Unfortunately, I don‚Äôt think this is the type of memories that I am supposed to be making with my family.¬† I don‚Äôt mean to put them through this, but in my effort to get everything done, to make sure their life after me is easier, I loose sight of the big picture.
I did, however, take time to make memories with Angelina a couple of weeks ago.¬† Her friend, Missy is a student atKaplanCollegemajoring in photography.¬† Her final project was to do a photo shoot, and as a favor to Angelina, she chose us as subjects.
I have always been interested in music, although not very good at playing.¬† Angelina, on the other hand, has my Father‚Äôs talent and can play by ear just about any instrument she picks up.¬† We decided to take my guitar and her keyboard to the photo shoot as props.¬† We had a great time just goofing off and being ourselves, and I think it shows in the pictures.¬† Who would have thought that I would be that photogenic?¬† Maybe I missed my calling.¬† It is times like this that I want my daughter to cherish and hope everyone, not just those who are suffering with MSA are doing with their loved ones.
Now, for an update from the Dayton Barefoot Runner‚Äôs 5 Mile Race to Find a Cure for MSA, we were able to raise nearly $3,100.¬† After contacting both Dr. David Robertson ofVanderbiltUniversityand Dr. Charles Ide of theUniversityofWestern Michigan, we have decided to donate the proceeds to theUniversityofWestern Michigan.¬† Dr. Ide seems to have made some recent progress on MSA research and we have all agreed this would be the best use of the funds.
This is where we need your help!¬† We would like to take a check to them for $5,000.¬† We are a little short.¬† We are asking for donations to help us reach that goal.¬† Donations made to this charity are tax deductible and can really make a difference in the life of someone that is suffering from this disease.
I have appealed twice to the Ellen DeGeneres Show to do a segment on MSA, as well as the Oprah Show (while it was still in production) and to the Dr. Oz show, but with no response from any of them.¬† Fortunately they must not know of anyone with this disease, or I am sure they would want to help.¬† MSA needs a celebrity to help us bring awareness.¬† MS has Jerry‚Äôs Kids; Parkinson‚Äôs has Michael J. Fox.¬† Who will step up to speak for the 50,000 Americans that suffer daily from this disease?
Dr. Ide has agreed to see me and we will be going to his facility on May 10th.¬†¬† I will be available to donate whatever he needs for further research, blood, tissue, etc.¬† So if you would like to make a monetary donation, time is of the essence.¬† To be able to get your check deposited to the Foundation and a check cut made payable to UWM, we will need your donation by April 30, 2012.¬† Checks can be made payable to:
Greene Giving; Hope for MSA
25 Greene Street
Or if you would like a receipt for your donation, you can mail your check to:
Hope for MSA
Thank you in advance for your support.¬† Together we can make a difference.