brain fog moment
October 8, 2009 Just thought I'd mention a moment I had just the other night. I was leaving an event that I had attended. As I got into my car, I was going to roll down my passenger window, but I couldn't locate the button, so, I thought I'd put my key in the ignition and start the car, but, I couldn't locate the ignition...which made me frustrated, so, I reached up to my rear view mirror to turn on the dome light, so I could see why I was having trouble! When I did, I looked at the mirrow, since I couldn't find the light switch, and Oh my goodness! I then realized I was not even in my own car! Wow! That is why I couldn't find my buttons and ignition! So, I grabbed up my purse and book bag, and got out of the car as quickly as I could. I then got into my own car (which was the same color) and then I drove away...but, then I really thought, I should go back and apologize to the car owner, and admit what I did, in case I left anything where I had thrown my purse, like, if anything fell out of it! I waited for the owner to come to his car, I admitted my mistake, and he laughed and thought it was fine. (Luckily, it was an event at our church...so the people were friendly!).Then, I drove on home, and felt sheepish about the incident. When I got home, however, I realized that my error was not over! I had left my walking stick or cane in his car! I then had to call the youth pastor and ask him for the phone number, and then call the gentleman and tell him I had left the cane in his car! He was quick to say he'd bring it back. I told him he could wait a day or two, for the next church thing, but, he knew I would need it, so, he said he'd bring it back to the church for me. I then had to call my husband and ask him to stop by and get the cane from the gentleman.Talk about embarrassing! wow! Now, that was last Monday night. Then, today, I had another incident. I went to a Costco to get some items that were needed. I know you have to keep your receipt out, so, I kept hold of it in my hands intending to show it to the clerk. When I was about to leave, my son asked for some food, so we went over to the food court area, and I bought the food. Then, as we prepared to walk out, I realized I had no idea where I had put the receipt! I searched for a good ten minutes, with frustration. Then, my son found it, and we were able to go. Not until after the clerks were telling me I could not leave. I understood, they needed proof that I had purchased the food items...but, it was so embarrassing! I think my brain fog is trying to take over my mind!
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It has been a long while since I journaled here. I just thought I\'d mention that yesterday I had my second infusion of Tysabri. The nurses are nice enough, and they do their job as well as they can, but, they did have a bit of trouble with my veins yesterday. I had drank plenty of water and juice the day of and the day before, so, my veins were plump enough, but, the vein in my inner elbow for some reason did not take well to the needle. When the nurse tried to \"flush\" it, it swelled up under the skin, so she removed the needle. Then she tried a different vein. She ended up picking the one in my left hand, on the back of it. That was a sore spot, and the vein tried to escape when she was poking the needle in...as if it were a worm squiggling away! Anyhow, she finally got it in, and then the infusion started. It took the hour for the Tysabri, then another hour for the remaining drip (saline drip, or something). The time amount of the entire thing was about 2 1/2 hours.
I mostly wrote a letter and read a book a little, and wrote in my journal.
I also talked to a lady who was having blood drawn in the infusion center. I do mean blood drawn...she gave at least a pint or more...maybe more like a quart! While I talked with her, I learned that she was 93 years old! Wow! She was born in 1917. Amazing! She looked quite good for the age she was!
Hard to believe she was giving up that much blood! Wouldn\'t think you could spare that much when you were that old, and she was small too!
Anyhow, my infusion went ok. After it was done, and I came home, I had the headache, and then I got a stomach ache. I have heard that is normal. Just kind of crampy. Today is the day after, and I am doing well enough. Just tired. Fatigued.
Well, still praising Jesus! He is my strength. That I KNOW!
oh...just to add to last post...the date of this journal entry is January 13, 2010 ...well, it actually the 14th now, but I haven\'t headed to bed yet, so, it still feels like it is the 13th!
Later!
Well, it is now February 20th, 2010.
My update is that I have had my third infusion of Tysabri this month. I have not noticed any positive changes. Just bruises from the infusions. But, I still am trusting that the medication is doing what it can to slow down the disease. So, I am remaining hopeful.
As for my current symptoms...well, I am still dealing with the entire right side being numb, and tingly whenever anyone touches my right side. Even if I set my elbow on my own right thigh, as if to like, lean on my leg with my head cupped in my hand, I make the tingling feeling go through my leg. Not comfortable. So, I try to avoid that!
I feel bad as my family feels they need to avoid touching me, due to the tingling. My kids still give hugs, but they try to be gentle, and my husband does the same. It is still just so wierd. It has been that way now for almost two years.
The left arm to fingers is also numb and tingly in the hand/fingers.
The L\'Hermittes is still bad. Still shoots like electrical shocks if I even so much as tilt my head downward to look at my shirt.
I am not having as bad of Optic neuritis now, as I was two months back. So, I guess that is a good thing. The eye doctor said he could see where I am dealing with the results of the \"dings\" on the nerve area. He is hoping the nerves are building back up some of the mylenation. I think that is what he was talking about.
Anyhow, So, that is about where things are at right now.
I am glad the nurse who did the last infusion was able to find the vein easier this time. The time before, they had to do the vein poke twice, as the first time didn\'t get in right...it swelled up when the nurse flushed the line! This time was better.
Well, that is about it I guess.
I know this is a weird statement, but, I miss friends from the old support group I was once in. I don\'t have a local support group where I live now. Besides on the network of MS Society, or Daily Strength site, I don\'t really have any friends that understand the whole MS world.
I do not wish MS on anyone, but, I do kind of wish I had a support group nearby, so I could have friends who relate to MS issues. I just miss that.
Well, I think I am depressing myself with these thoughts...so, I am gonna end for now! I need to go read my Bible, and talk to the One Who sticks closer than a brother...Jesus!
later.
Well, it is now February 20th, 2010.
My update is that I have had my third infusion of Tysabri this month. I have not noticed any positive changes. Just bruises from the infusions. But, I still am trusting that the medication is doing what it can to slow down the disease. So, I am remaining hopeful.
As for my current symptoms...well, I am still dealing with the entire right side being numb, and tingly whenever anyone touches my right side. Even if I set my elbow on my own right thigh, as if to like, lean on my leg with my head cupped in my hand, I make the tingling feeling go through my leg. Not comfortable. So, I try to avoid that!
I feel bad as my family feels they need to avoid touching me, due to the tingling. My kids still give hugs, but they try to be gentle, and my husband does the same. It is still just so wierd. It has been that way now for almost two years.
The left arm to fingers is also numb and tingly in the hand/fingers.
The L\'Hermittes is still bad. Still shoots like electrical shocks if I even so much as tilt my head downward to look at my shirt.
I am not having as bad of Optic neuritis now, as I was two months back. So, I guess that is a good thing. The eye doctor said he could see where I am dealing with the results of the \"dings\" on the nerve area. He is hoping the nerves are building back up some of the mylenation. I think that is what he was talking about.
Anyhow, So, that is about where things are at right now.
I am glad the nurse who did the last infusion was able to find the vein easier this time. The time before, they had to do the vein poke twice, as the first time didn\'t get in right...it swelled up when the nurse flushed the line! This time was better.
Well, that is about it I guess.
I know this is a weird statement, but, I miss friends from the old support group I was once in. I don\'t have a local support group where I live now. Besides on the network of MS Society, or Daily Strength site, I don\'t really have any friends that understand the whole MS world.
I do not wish MS on anyone, but, I do kind of wish I had a support group nearby, so I could have friends who relate to MS issues. I just miss that.
Well, I think I am depressing myself with these thoughts...so, I am gonna end for now! I need to go read my Bible, and talk to the One Who sticks closer than a brother...Jesus!
later.
May 20th, 2010
well, I have had a bit of a hard day today...mostly emotionally. I am just feeling rather lonely today. And tired.
Well, it has been a long time since I wrote anything here. So, I will just bring up to date what is going on with me at this point.
Still not on any major medication. Bummed about that. So, since my last MRI was back in June, I can only imagine that the MS is still causing me trouble in my brain and body. Last MRi showed 27 new active lesions. :( That means, that the last mri was nearly 6 months ago. So, I have to wonder what is really happening now?
I haven\'t been back to see my Neuro since last June, either. The medicare is still covering me, but Medicaid is not, so, I haven\'t got the $ to pay the dr., or to drive up to Kirkland now. Bummer.
:( So, I am just sitting in a low spot right now.
Still taking Baclofen, to help with the Spasticity, but, that is all I am on.
Still don\'t really have any close friends to share my miseries with. I have one MS friend, that lives near me, but, she is not someone I have confidence in talking to. Just not close to her.
I have two MS friends I chat with online. Thru the MS Society UK website, but, again...long distance friendships. Not quite the same, as having a close friend to share with. :(
I don\'t really have any close friends.
So, again. I am not living a very fulfilled life right now. :(
No med.\'s, no friends, no dr. coverage. Just not a very happy life right now.
I took 3 falls this week. One today, hurt hard as I landed on my right knee. While shopping at a book store. Landed hard on my knee. Ouch!
Two other falls, were not too bad, but, just proof that I am losing my balance more easily lately. Bummer.
Guess that is about it. December 15th, 2011.
December 15, 2011 Oh, I need to mention one good thing. That is that we have been chosen by Habitat for Humanity, to be Homeowner\'s. We have to work to get Sweat Equity Hours, but, we are working our way up on those! That means that soon, well, in a few months, we will get to have a house of our own! That is the good news! So, even tho I am bleak in my personal life, I do have some good to hold on to. Thank You Jesus!
Congrats on getting a new house! That\'s fantastic! I trust it will be one that will be easy to get around in should the day ever come that you might need a chair. Heaven forbid! Gentle hugs, Linda