This morning I was very off balance. My vision is blurry and my left foot and right hand are tingly. Most obvious though is my trouble walking, having to hold on to get anywhere. I anticipate this becoming one of those weeks where I make my way down the stairs on my butt. I am experiencing some noticeable pain in my spleen, so I will have to get my blood checked on Friday, sooner if it's too much for me. And unfortunately, my least favorite symptom has arisen again - the limbic seizures where I cry out of nowhere for no good reason.
On the positive side, my psoriasis is disappearing again and my ACA on my fingers is trying to as well. I am so tired. I need to take a break now. Time for dose #2
I am not sure, but I think my parents may need to assist in Mini's bedtime tonight. I'm going to stop writing now and reconvene with you in a few hours, as that is how I live my life - hour by hour.
OK,so an hour has gone by and sure enough, it's been eventful. My spleen is killing me and if this continues I will call Dr. J. I just took a Norco (Vicodin without the Tylenol) and Zofran for nausea. I am feeling really iffy right now. I feel like everything is going to explode. I am tired but I cannot sleep. I have the TV on, but I cannot concentrate. I am writing my blog but I am not entirely conscious of what i am writing.
This is a vast change from where I was three days ago, having been on nearly three weeks of holiday, feeling lucid and able to live some kind of life. I know we are doing the right thing and to keep my eye on the ball, but the ball is blurry. I'm going to leave you now again and see what happens later on today.
It's been a rough day, my dad came over around 2 o'clock just sit on the bed with me and do nothing. I was obviously watching West Wing and trying to get to the expert level on this damn game on my iPad and I just cannot seem to do it. It's making me crazy. We really didn't talk about much beyond the beginning when I told him that my spleen felt like it was taking up the other side of the bed. He laughed and said he had no idea where his spleen was in relation to his liver. I replied that I didn't either until it turned into a canoe in my side. That gave us a good laugh.
I forced down my 4pm meds, a combination of neuro meds and antibiotics; about 20 in all. I'm at the point where I dump them out and then just sort of stare at them for a few minutes and plan my attack. Which ones will I take first? I always take the powdery ones first, the tablets, because they taste so nasty when they disintegrate in your mouth and it's hard for me to swallow right now. Then I follow with the capsules and gel caps. This time I took them with warm water and 4 tsp of xylitol water, which we are using together with lactoferrin to rip through the biofilm and release more hell.
Tonight I just feel kind of like a zombie. Mini came home and snuggled with me for a minute and now my mom is bathing her while my dad feeds the dogs and then Mini. I think Dad may sleep over or at least wait until I fall asleep (yeah right, that went swimmingly last night - not) and then come first thing in the morning.
The worst part is the urgency. It come out of nowhere and you literally have to run to the bathroom but your legs don't work. It's a challenge and very sad part of it. Sometimes I feel like my very functions and rights as a human have been stripped from my life. It's just not a good place to be. This is hard to write about because it is so extremely personal on such a profound level, but it is reality. I want you to know. I want you to know what I and so many others go through.
So, I will lay this computer down again and write about the rest of the evening later on. A tough day for sure.
It's hard on Mini. She just wants me. A few days ago when we were laying in bed she said, "Mama, when you start your meds on Monday and feel sick, I will take care of you. I am special. I was made especially for you." And she does help me in so many ways. And here I am, a helpless mom, unable to help her with the most basic of things. My mom bathed her tonight, dad fed her and now he is reading a book to her. I will then climb into bed with her for two songs, as opposed to our usual four songs, hoping I will not have to run to the bathroom in the middle. This poor kid.
Dad was going to sleep over, but I just told him it's OK to leave. There is really nothing he can do tonight. I am not having seizures or losing function in my legs and falling, so he should go home and get a good night's sleep. I think I will call it a blog night for now. If something exciting happens, I will let soldier on with the blog tomorrow, but since it's the same protocol all week, I suspect that it will be mostly the same, with a side order of some seizures, weak legs, speech and memory issues. As I explained to Mini tonight, it's only temporary and I am hanging tough. Even through the tears, I keep it tough and do as I have been told. We are after these little bastards with a vengeance and I don't plan on letting up anytime soon.
It's been a rough day, my dad came over around 2 o'clock just sit on the bed with me and do nothing. I was obviously watching West Wing and trying to get to the expert level on this damn game on my iPad and I just cannot seem to do it. It's making me crazy. We really didn't talk about much beyond the beginning when I told him that my spleen felt like it was taking up the other side of the bed. He laughed and said he had no idea where his spleen was in relation to his liver. I replied that I didn't either until it turned into a canoe in my side. That gave us a good laugh.
I forced down my 4pm meds, a combination of neuro meds and antibiotics; about 20 in all. I'm at the point where I dump them out and then just sort of stare at them for a few minutes and plan my attack. Which ones will I take first? I always take the powdery ones first, the tablets, because they taste so nasty when they disintegrate in your mouth and it's hard for me to swallow right now. Then I follow with the capsules and gel caps. This time I took them with warm water and 4 tsp of xylitol water, which we are using together with lactoferrin to rip through the biofilm and release more hell.
Tonight I just feel kind of like a zombie. Mini came home and snuggled with me for a minute and now my mom is bathing her while my dad feeds the dogs and then Mini. I think Dad may sleep over or at least wait until I fall asleep (yeah right, that went swimmingly last night - not) and then come first thing in the morning.
The worst part is the urgency. It come out of nowhere and you literally have to run to the bathroom but your legs don't work. It's a challenge and very sad part of it. Sometimes I feel like my very functions and rights as a human have been stripped from my life. It's just not a good place to be. This is hard to write about because it is so extremely personal on such a profound level, but it is reality. I want you to know. I want you to know what I and so many others go through.
So, I will lay this computer down again and write about the rest of the evening later on. A tough day for sure.
It's hard on Mini. She just wants me. A few days ago when we were laying in bed she said, "Mama, when you start your meds on Monday and feel sick, I will take care of you. I am special. I was made especially for you." And she does help me in so many ways. And here I am, a helpless mom, unable to help her with the most basic of things. My mom bathed her tonight, dad fed her and now he is reading a book to her. I will then climb into bed with her for two songs, as opposed to our usual four songs, hoping I will not have to run to the bathroom in the middle. This poor kid.
Dad was going to sleep over, but I just told him it's OK to leave. There is really nothing he can do tonight. I am not having seizures or losing function in my legs and falling, so he should go home and get a good night's sleep. I think I will call it a blog night for now. If something exciting happens, I will let soldier on with the blog tomorrow, but since it's the same protocol all week, I suspect that it will be mostly the same, with a side order of some seizures, weak legs, speech and memory issues. As I explained to Mini tonight, it's only temporary and I am hanging tough. Even through the tears, I keep it tough and do as I have been told. We are after these little bastards with a vengeance and I don't plan on letting up anytime soon.
Oh Andrea....I am praying so hard for you. I so wish you did not have to endure this.
ReplyDeleteYou're doing great- eye on the fuzzy ball. Love you! <3
ReplyDeleteThinking about you and Mini! You've got this!!! Take it one hour at a time, one minute at a time if need be. Think blue skies, PC and butlers! You WILL NOT let those bastards win :)
ReplyDeleteDu är fantastisk!! Stor kram
ReplyDelete