Well it's been a quick month. It seems to be flying by without any major snafu's. Dale and I celebrated our 11th year of marriage on the 12th with dinner at a golf golf and resturant called Mc.Phees. During Dinner there was benefit tournament going on. The benifit happened to be one that Dale and I had used with Ian. It's called Jack's Helping Hands and it is stocked with special needs toys and modules like a library system. They would work out of the gym that we would go to, and out of the Autism Spectrum Disorder building in San Luis. So We were more than happy to donate a little more. After Dinner, we went and saw "all about Steve" with Sandra Bullock" Cute movie, but at $10.50 a ticket, I would reccomend renting it. I fell in love with the T Shirt that she is wearing throughout the entire movie! Then we came home and we all went to sleep.
Earlier in the week, I had been in the ER for yet another excruitiating headache. This headache had some neurological effects, but they had a trauma coming in, so I was given my usual cocktail of meds and sent home. I wasn't too concerned since i had an appointment with a neurosurgeon at UCLA in less than a week. So after talking to Doctor Bob Shafa at UCLA, he is ready to get me started on treatments. So he and my new PCP spoke and decided to do an MRV on the 25th and they are checking for a blood clot in my main vein in my brain. When that comes back negative, then I will be going to UCLA for a special test. They will drill a small hole in my head and put a probe in my head to directly measure the fluid in my grain. If the fluid is consistently over 20 than the doctor will proceed with a shunt. Doesn't all that sound fun? So we need to raise some $$ to pay for some outstanding medical bills. both from me and from Ian. Ian goes back to the children's hospital to review his growth on his neck. If it has grown, they will want to remove it. So it looks like October is going to be busy month this year. Next week, We have a ,Team meeting for Ian's adult school reguarding moving him up to gist grafe.
I am falling asleep as I type, so I will close this up for now.
Please keep the prayers, good thoughts and positive outlooks. I thank you fou from the bottom of my overworked but still spry heart. I love each and evey one of you.
Traci
Saturday, September 19, 2009
Thursday, September 3, 2009
Septemeber 2009
So as you have read, or know of me, September has usually been a pretty crummy month, something awful always happens in September. This year is proving itself no different. We are only two days into the month, strike that three days, and I already want to hibernate til it's over. Because some things are so current and fresh, and still transpiring, I won't go into detail. But, my brother is struggling with finding the right path, and living on the straight and narrow and taking responsibilites for his actions. My mom is struggling in her marriage. Neither want to give, yet both want to see miracles happen. I stand on the sidelines and give her my listening ear and any words of Godly wisdom I may have. I can't make any decisions for her, but I will support her in whatever she decides to do. I got a call today from one of my close friends (she was supposed to take me to UCLA next week). It seems as though, the tables have turned and I will be taking her to the nuerologist (we have the same one), in SLO because she had a seizure yesterday and they took her license until further tests are done. Yeah... right before a 3 day weekend! My other best friend had a death on her husbands side of the family and I will attest to the fact that they have seen too much death in the last 24 months! No doubt about that!
Now for me. I know that God woke me up this morning at a quarter to two for a reason. what exactly that reason was I am unsure, but I took a few minutes to check on my boys and a few minutes to pray, and I swear God say blog. Seriously, Does God know the word "blog"? I guess he does since he created us and knows us all before we know ourselves. But you know, I really wish God would let me in on some of those secrets once in awhile.For example:
Monday, I got home from taking Jon back home and went to my chiropractic aptt. I had a bruised rib from an US of my kidneys the week before and I had popped a rib out, so I was sore. Dr. Pull was very gentle and actually worked more on my left side to see if he could help the headaches, the dizziness, the blurry vision, the buzzing in the ears, the soreness, and my overall well being (he puts a high standard on himself).
Not more than an hour after I got home, I was in bed and in pain. all the adrenaline from the following week was gone, I was able to take a breath (not a deep one not with a bruised rib). And I continued to feel crummy all night Monday and going into Tuesday. Tuesday I was able to get Ian to school and then I came home and fell back into bed. I slept another 3 hours before going to pick up the kid from school. Then when he came home, it was just me and him, no therapy that day and he really wanted to watch a movie, and I was not feeling up to par, so I said no problem. I did manage to do some laundry and vaccuum the capets, but that took everything out of me. That night we had a church finacial class to go to. At this point my fingers were swollen like little sausages, My left leg was cramping up and my right hand was not functional and my equilibrium was off, and I just didn't feel right. But this is how my Lupus can start, so I didn't think anything of it. I woke up Wednesday morning, feeling even worse, my speech was delayed, my left leg was like a wooden crooked stump, and my right hand still wasn't functional by any means, I couldn't grip anything, it was painful, and I just avoided using it at all costs. I also was experiencing some deep chest pain overnight and into wednesday, and lost the feeling in the figertips and toes. And my speech was still delayed. Some letters I stuttered, some words were lost, others were coming out wrong ( all things that happened when I had Inter cranial hypertension headache attacks. But my head wasn't full blown out of control painful. I would be lying if I said I didn't have a headache, but it was mangeable, no meds needed to control it.
So I decided not to go to the ER knowing that they were going to either dimisss it as I was off my rocker or run a bunch of tests that we don't have the money for, and probably wouldn't show anything anyway. I had an appointment scheduled to see my new doctor, and I went to that lenghthy appt. He thinks that because my blood has clotting issues (which I had known of, pretty common with Lupus), that my blood isn't going to my cappilaries, therefore I am getting the neropathy in my fingers and toes and my brain is malfunctioning, almost as it would as if I had a small stroke. So he ordered a bunch of tests to be done. I have to pee, poop,spit and bleed and then send it all off to the lab. I just about had a small stroke when I had to write a check for $1200 for my appointment! Holy crap! I sure hope this guy can figure me out and get me on the path to a healthy recovery.
So I don't want to alarm my mom and my friends. I don't want to be the "sick" one again. But this is kinda hard to hide. I have a leg that won't work and a hand that won't work, and my speech is rediculous, so I try to give short answers or use my computer or phone to "talk" to friends, kind of my cop out.
I don't want a pity party, and I don't want people to feel sorry for me, I don't even want help (unless I ask for it), call me stubborn that way, but I feel like I lose my independence, my dignity when I am constantly asking for help. At the same time, I do need prayer. I need guidance, and wisdom from the Lord. I need his strength and endurance. And I need not to forget my boys. My husband takes on the burden of taking care of not only himself , but me and Ian, after he has put in 9 or so hours at work. And For Ian for his strenth and wisdom. He has to see his mommy "sick" and I know what that is like, and it's no fun. And he is making leaps and bounds at school and they are already talking 1st grade... yea... so if I can keep him on the right path and keep his seizures under control, and keep him body calm, then my baby might be a first grader before the year is up! I pray that God shows me the right decsion in that as well. I don't want to overwork Ian, because he will stop trying if he's overwhelmed, but right now, he's bored and is basically a helper in his Kinder class.
God give me the grace and mercy you show to others and allow me to have compassion on those who need it and pray for the sick and unhealthy ones, not just in me or around me, but for all those who believe in you and believe that you are the ultimate healer and that you gave the blind the ability to see and the lame the ability to walk and talk. Lord you have shown me you can perform miracles. I have plenty of testimony to that. But I ask in the Name of Jesus that you put your hands on everyone I know that is struggling, either emotionally, finacially, or physically. In your Name Jeasus, I praise your name. Amen.
Now for me. I know that God woke me up this morning at a quarter to two for a reason. what exactly that reason was I am unsure, but I took a few minutes to check on my boys and a few minutes to pray, and I swear God say blog. Seriously, Does God know the word "blog"? I guess he does since he created us and knows us all before we know ourselves. But you know, I really wish God would let me in on some of those secrets once in awhile.For example:
Monday, I got home from taking Jon back home and went to my chiropractic aptt. I had a bruised rib from an US of my kidneys the week before and I had popped a rib out, so I was sore. Dr. Pull was very gentle and actually worked more on my left side to see if he could help the headaches, the dizziness, the blurry vision, the buzzing in the ears, the soreness, and my overall well being (he puts a high standard on himself).
Not more than an hour after I got home, I was in bed and in pain. all the adrenaline from the following week was gone, I was able to take a breath (not a deep one not with a bruised rib). And I continued to feel crummy all night Monday and going into Tuesday. Tuesday I was able to get Ian to school and then I came home and fell back into bed. I slept another 3 hours before going to pick up the kid from school. Then when he came home, it was just me and him, no therapy that day and he really wanted to watch a movie, and I was not feeling up to par, so I said no problem. I did manage to do some laundry and vaccuum the capets, but that took everything out of me. That night we had a church finacial class to go to. At this point my fingers were swollen like little sausages, My left leg was cramping up and my right hand was not functional and my equilibrium was off, and I just didn't feel right. But this is how my Lupus can start, so I didn't think anything of it. I woke up Wednesday morning, feeling even worse, my speech was delayed, my left leg was like a wooden crooked stump, and my right hand still wasn't functional by any means, I couldn't grip anything, it was painful, and I just avoided using it at all costs. I also was experiencing some deep chest pain overnight and into wednesday, and lost the feeling in the figertips and toes. And my speech was still delayed. Some letters I stuttered, some words were lost, others were coming out wrong ( all things that happened when I had Inter cranial hypertension headache attacks. But my head wasn't full blown out of control painful. I would be lying if I said I didn't have a headache, but it was mangeable, no meds needed to control it.
So I decided not to go to the ER knowing that they were going to either dimisss it as I was off my rocker or run a bunch of tests that we don't have the money for, and probably wouldn't show anything anyway. I had an appointment scheduled to see my new doctor, and I went to that lenghthy appt. He thinks that because my blood has clotting issues (which I had known of, pretty common with Lupus), that my blood isn't going to my cappilaries, therefore I am getting the neropathy in my fingers and toes and my brain is malfunctioning, almost as it would as if I had a small stroke. So he ordered a bunch of tests to be done. I have to pee, poop,spit and bleed and then send it all off to the lab. I just about had a small stroke when I had to write a check for $1200 for my appointment! Holy crap! I sure hope this guy can figure me out and get me on the path to a healthy recovery.
So I don't want to alarm my mom and my friends. I don't want to be the "sick" one again. But this is kinda hard to hide. I have a leg that won't work and a hand that won't work, and my speech is rediculous, so I try to give short answers or use my computer or phone to "talk" to friends, kind of my cop out.
I don't want a pity party, and I don't want people to feel sorry for me, I don't even want help (unless I ask for it), call me stubborn that way, but I feel like I lose my independence, my dignity when I am constantly asking for help. At the same time, I do need prayer. I need guidance, and wisdom from the Lord. I need his strength and endurance. And I need not to forget my boys. My husband takes on the burden of taking care of not only himself , but me and Ian, after he has put in 9 or so hours at work. And For Ian for his strenth and wisdom. He has to see his mommy "sick" and I know what that is like, and it's no fun. And he is making leaps and bounds at school and they are already talking 1st grade... yea... so if I can keep him on the right path and keep his seizures under control, and keep him body calm, then my baby might be a first grader before the year is up! I pray that God shows me the right decsion in that as well. I don't want to overwork Ian, because he will stop trying if he's overwhelmed, but right now, he's bored and is basically a helper in his Kinder class.
God give me the grace and mercy you show to others and allow me to have compassion on those who need it and pray for the sick and unhealthy ones, not just in me or around me, but for all those who believe in you and believe that you are the ultimate healer and that you gave the blind the ability to see and the lame the ability to walk and talk. Lord you have shown me you can perform miracles. I have plenty of testimony to that. But I ask in the Name of Jesus that you put your hands on everyone I know that is struggling, either emotionally, finacially, or physically. In your Name Jeasus, I praise your name. Amen.
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