Tuesday, March 8, 2011
all is WELL... God is Good!
My mom and i took Ian back up to the children's hospital last week, and even though the growth is still spreading, The surgeon said that it's nothing to worry about, and unless we can feel something, or it's interupting his breathing, there is no need to make another trip back up there! Yea... That one is down, now he has to clear up this cold so he can get his dental surgery done. And sometime this summer, I have to get my nose fixed. But for now, even though we all have a stomach bug, we are praising the Lord that This issue has been resolved!!!!
Sunday, February 6, 2011
It's 2011
wow... I looked back and realized it's been awhile since I have blogged anything. A lot has happened in the months that have gone by. So where do we start?! Let's start with what is happening here and now.
Me: I spend my days either sleeping, or moving slowly, or going to or calling doctors. I am also trying my best to be a part of Ian's class; participating in functions, and working in the class whenever possible. As far my health, because I know you are all wanting to ask about that... I feel OK. I definitely have my good days and my not so good days. Here's the run down.... due to my Lupus, my Kidneys are currently functioning at around 25%, the other 75% is just dead tissue. I am not elible for a transplant, because the doc says the surgery would be too risky and useless because my body would just detroy a new kidney. While we are still talking kidneys, I should mention that I have a tumor on my adrenal gland which is twice as big as my adrenal and is attached to my kidney as well (a healthy part). they have done a biopsy (ouch) and they do ultrsounds to keep an eye on it. so far it hasn't grown too much, and not enough for them to worry. Lets move a little to the front and the right.... My liver. My doctor describes my liver as "toxic". It too is behaving badly. it is refusing to make the enzymes necessary to breakdown solid foods, so I take meds for that, and also get most of my meals via meal shakes that give me all the nutrients my body needs. My brain is still challenging me, although, with the heperin and other meds i am taking, it keeps my headaches under control and keeps the fluid in my brain at a decent level.... could be a little lower. I have had several seizures and the doc says probably a couple small strokes as well, but nothing I can't recover from. my glucose is out of whack, my bun is high and creatine is sticking at 2.1 Sometimes it takes longer to rebilitate than others, but I always bounce back eventually. Right now, I am trying to make a name for myself with sweet treats and cupcakes. Soon you may see our company doing weddings and parties. but for now it's all about raising money for Project Surf Camp and the Walk for Autism GO TEAM IAN!!!
there is more I could go on about, but let's move on..... let's talk about Ian.
Ian has had his own struggles. He is in the second grade, although his abilities are all over the board. He is a great reader and is dong great at math. He loves science and loves to see how things work and how to put things together and take them apart. He also has grown a lot of compassion. He loves animals, and babies. Two things that once used to scare him, he now shows much love for. when he's not in school, and not in therapy, he likes the water, and likes to hang out with friends. He has a new girlfriend or two or three every week. He does seem to get along better with the girls, he doesn't like to wrestle, play ball or rough house with the other boys. but all his classmates, teachers and therapists seem to love him and say he has a lot of love in his heart and isn't afraid to show it. He has been going to the children's hospital in Madera for a mass that is growing in his neck and chest. they believe it is harmless thymus tissue and are watching it. the surgery is riskier than laving it there as long as it doesn't interupt anything. He takes meds for his seizures and for his behaviour and meatonin to sleep.
Dale has had some changes. He is no longer a supervisor of the gabage company, but is a relief driver/ trainer. It's nice in some ways, his hours are pretty predictable, and he seems to be bringing home less stress, which is a plus for all of us.
We lost our house in Porterville; our investment property.... but with all the medical bills and the poor APR we got it was just a sinkhole, so had to say adios. it was a nice house too, just not a good investment for us. it sucks to walk away from something like that.
We trust in God, and know He has a plan for us. We will continue to trust in Him. And although I physically can not have any more babies, i am pleased to announce that i have another godchild, and i love him as if he was my own. I love all my babies.
well, I think I have bored you enough for now. if you have anymore questions, feel free to ask. Much Love, Hugs and Kisses Traci and Family.
feel free to help us out with either charity.
projectsurfcamp.com
http://www.asctowalk.com/iankimball
Me: I spend my days either sleeping, or moving slowly, or going to or calling doctors. I am also trying my best to be a part of Ian's class; participating in functions, and working in the class whenever possible. As far my health, because I know you are all wanting to ask about that... I feel OK. I definitely have my good days and my not so good days. Here's the run down.... due to my Lupus, my Kidneys are currently functioning at around 25%, the other 75% is just dead tissue. I am not elible for a transplant, because the doc says the surgery would be too risky and useless because my body would just detroy a new kidney. While we are still talking kidneys, I should mention that I have a tumor on my adrenal gland which is twice as big as my adrenal and is attached to my kidney as well (a healthy part). they have done a biopsy (ouch) and they do ultrsounds to keep an eye on it. so far it hasn't grown too much, and not enough for them to worry. Lets move a little to the front and the right.... My liver. My doctor describes my liver as "toxic". It too is behaving badly. it is refusing to make the enzymes necessary to breakdown solid foods, so I take meds for that, and also get most of my meals via meal shakes that give me all the nutrients my body needs. My brain is still challenging me, although, with the heperin and other meds i am taking, it keeps my headaches under control and keeps the fluid in my brain at a decent level.... could be a little lower. I have had several seizures and the doc says probably a couple small strokes as well, but nothing I can't recover from. my glucose is out of whack, my bun is high and creatine is sticking at 2.1 Sometimes it takes longer to rebilitate than others, but I always bounce back eventually. Right now, I am trying to make a name for myself with sweet treats and cupcakes. Soon you may see our company doing weddings and parties. but for now it's all about raising money for Project Surf Camp and the Walk for Autism GO TEAM IAN!!!
there is more I could go on about, but let's move on..... let's talk about Ian.
Ian has had his own struggles. He is in the second grade, although his abilities are all over the board. He is a great reader and is dong great at math. He loves science and loves to see how things work and how to put things together and take them apart. He also has grown a lot of compassion. He loves animals, and babies. Two things that once used to scare him, he now shows much love for. when he's not in school, and not in therapy, he likes the water, and likes to hang out with friends. He has a new girlfriend or two or three every week. He does seem to get along better with the girls, he doesn't like to wrestle, play ball or rough house with the other boys. but all his classmates, teachers and therapists seem to love him and say he has a lot of love in his heart and isn't afraid to show it. He has been going to the children's hospital in Madera for a mass that is growing in his neck and chest. they believe it is harmless thymus tissue and are watching it. the surgery is riskier than laving it there as long as it doesn't interupt anything. He takes meds for his seizures and for his behaviour and meatonin to sleep.
Dale has had some changes. He is no longer a supervisor of the gabage company, but is a relief driver/ trainer. It's nice in some ways, his hours are pretty predictable, and he seems to be bringing home less stress, which is a plus for all of us.
We lost our house in Porterville; our investment property.... but with all the medical bills and the poor APR we got it was just a sinkhole, so had to say adios. it was a nice house too, just not a good investment for us. it sucks to walk away from something like that.
We trust in God, and know He has a plan for us. We will continue to trust in Him. And although I physically can not have any more babies, i am pleased to announce that i have another godchild, and i love him as if he was my own. I love all my babies.
well, I think I have bored you enough for now. if you have anymore questions, feel free to ask. Much Love, Hugs and Kisses Traci and Family.
feel free to help us out with either charity.
projectsurfcamp.com
http://www.asctowalk.com/iankimball
Sunday, October 11, 2009
mid october
I can't believe it's almost the middle of the month, and things are moving so fast. All the details will come later, but I feel like I am stuck in a tornado and can't get out. My foot is not yet healed. I had to pass on physical therapy because of the cost. My medical bills have drained us both emotionally and physically, and we haven't even gotten the bills for my foot accident and brain surgery is in two weeks..... hope they take payments, because I would hate for them to reposess my brain, not that it would matter much. I think I am going to miss the Havest games with Ian this year which I am totally bummed about, but sacrifices have to come somewhere. I am sure he will have fun with Auntie or nana or Daddy, whomever has him. We are gonna have a swap meet and do a little declutter, although I don't thnk it will be done before surgery, but all the proceeds will go towards are medical bills.
I am on the craziest diet, apparently my body doesn't like food, or doesn't like digesting it. I am allergic or sensitive to... are you ready, I will just give you the catagories not the whole list...Gluten (wheat), Soy, Dairy, Shellfish, pork, and sugar ( I have a extreme amount of yeast in my system, hence the ugly toenails that never see the light of day.) and lettuce... yes, lettuce. So here I thought I was a healthy eater, but I was really not for my spcific needs. And I have chicken, turkey, eggs, yogurt, a couple fruits, a few veggies, but to keep my kidney disease in check, I need to keep my proteins down. OH, and I can't have tap water... but ours is so uber filtered and well water that it doen't have all the chemicals in it, so I think I am safe there.
So I am starting to get a little worried about surgery. the first one is a trial to see if I am even I candidate for a shunt, and then if that proves the theory correctly then I have major surgery to put in a shunt that will empty out into my belly (one more thing for me to figure out how to digest)
I have already been scoped down my esophagus and they said it looked healthy, but that I may have a prolasped valve causing me not to be able to keep anything down (this is nothing new, this has been going on since I was a teen). So I take a little pill to relax the mucsles, but now they think it's relaxing my colonic muscles as well.... I told the doc can we just work on one end at a time? I need a small hole patched in my nasal cavity from having my nose broken twice in the same spot, it chipped a piece of bone out and so now if I get a sinus infection I have a larger risk of another ear infection and the inner and outter ear are both scarred from multiple infections. I hope this simple procedure is covered my insurance! Maybe I will ask McSteamy to do it!
October 20th is our new meeting for Ian. They will be dicussing moving him in to the first grade class. I pray the Lord for guidance on this one, because as a mother I want to see him move up, but I have to trust in the school system to let me know if he is ready.
The year is almost up. A poor christmas for us this year, but as long as we are all safe,warm, and healthy, who could want anything more at this point!
a song that means something to me right now.
http://www.youtube.com/watch?v=NG2zyeVRcbs
I am on the craziest diet, apparently my body doesn't like food, or doesn't like digesting it. I am allergic or sensitive to... are you ready, I will just give you the catagories not the whole list...Gluten (wheat), Soy, Dairy, Shellfish, pork, and sugar ( I have a extreme amount of yeast in my system, hence the ugly toenails that never see the light of day.) and lettuce... yes, lettuce. So here I thought I was a healthy eater, but I was really not for my spcific needs. And I have chicken, turkey, eggs, yogurt, a couple fruits, a few veggies, but to keep my kidney disease in check, I need to keep my proteins down. OH, and I can't have tap water... but ours is so uber filtered and well water that it doen't have all the chemicals in it, so I think I am safe there.
So I am starting to get a little worried about surgery. the first one is a trial to see if I am even I candidate for a shunt, and then if that proves the theory correctly then I have major surgery to put in a shunt that will empty out into my belly (one more thing for me to figure out how to digest)
I have already been scoped down my esophagus and they said it looked healthy, but that I may have a prolasped valve causing me not to be able to keep anything down (this is nothing new, this has been going on since I was a teen). So I take a little pill to relax the mucsles, but now they think it's relaxing my colonic muscles as well.... I told the doc can we just work on one end at a time? I need a small hole patched in my nasal cavity from having my nose broken twice in the same spot, it chipped a piece of bone out and so now if I get a sinus infection I have a larger risk of another ear infection and the inner and outter ear are both scarred from multiple infections. I hope this simple procedure is covered my insurance! Maybe I will ask McSteamy to do it!
October 20th is our new meeting for Ian. They will be dicussing moving him in to the first grade class. I pray the Lord for guidance on this one, because as a mother I want to see him move up, but I have to trust in the school system to let me know if he is ready.
The year is almost up. A poor christmas for us this year, but as long as we are all safe,warm, and healthy, who could want anything more at this point!
a song that means something to me right now.
http://www.youtube.com/watch?v=NG2zyeVRcbs
Friday, October 2, 2009
well, Sept ALMOST escaped me
So.... I thought that we would make it through September without any incidents. But, nope.... Sept 29th I was walking up one of the stairs from our sunken livingroom into our dining room and was heading toward the kitchen, because I was baking goodies for the church open house. As I was goin up the step, I just stepped with my toes and the pad of my foot, and I heard a pop and down I went. Thank goodness it was on the carpet. But I layed there crying and screaming uncontrolably, and so Dale wasn't taking any chances and called the ambulance. Didi came down and took care of Ian, while I sat and sat and sat, waiting for xrays. When we got there, there was only one other kid ahead of us and he had all of his tests and was waiting to be discharged. When I finally got back to xray the radiologist admitted they forgot about me. I said that is the last time that will happen. I have such bad experiences with AG Hospital. Yet I have heard others say it has gotten so much better. So the diagnosis is that I tore the mucsle and the ligament holding my ankle bone together. On top of my piggies looking like wittle saugages, my ankle is all jacked up and looks like it's gonna take some time to heal. I am thinking God has a plan and it must be for me to lay back and take in his word a little. Bethany had an excellent idea and that was to watch the whole beth moore series while I laid up. I think I will save that for when my mom is here to help me out. She would really enjoy that too. So I will be laid up for the next 3-5 weeks depending on how my body depends to heal. We are going to Long Beach the 23rd and 24th for a friends wedding, can't forget my camera... those candid pics are the best! and then I am trying to get my first of two brain surgeries and I hope to be home by the 30th unless they plan on doing the shunt right after the first surgery. Only Dr. Bob Shafa can tell us that, and I pray that God is leading him in His direction
So please be patient with me, with my family. If you see new faces at our house, it's because Didi has hired someone to help us out. So Dale doesn't have such a chore to take on when he gets home. Ian is acting out a bit and is testing anyone he can. This was his first week he didn't get his donut.... so mommy didn't get holes either.... oh well, not supposed to have them. Oh, that brings up a whole other issue....
My new PCP did a food sensitivity/allergy test on me and my diest has been severely restricted for at least 6 months.
NO dairy (casein)
No Soy
No Wheat
No Sugars
No Shellfish (I don't like seafood)
No Caffeine (unless I am plagued by a headache)
No artificial sweetners/ msg/stevia
I think you get the point. So don't get offfended if I don't eat something you offer me, I am really trying to clean out my gut... although I do break the rules sometimes!
We are lookng forward to brain surgery this month. It's been over 3 months since all this started. I won't get my vision back, but hopefully I won't lose anymore. I may still get headaches, especially with weather change or climate change, but my everyday lifestyle should improve.... no it WILL improve! I have so much faith in God. Yes we will be broke for years to come, but God will prevail. God will provide. Any extra prayers are welcome. any extra goodies won't be turned away. Dale can't have nuts and Ian can't have Dairy. And don't wory about me.. I am just too hard to cook for. I will take your prayers and hold them close to my heart. What I really would like is for someone to come and paint my toenails... don't ask me why, but I always like to have pretty toes when I go into the hospital. Thank you everyone for eveything. God Bless you. and Much love to you all.
Saturday, September 19, 2009
Things are Progressing
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 $$ to pay for some outstanding medical bills. both from me and from Ian. Ian goes back to the children's hospital to review his growth on his neck. If it has grown, they will want to remove it. So it looks like October is going to be busy month this year. Next week, We have a ,Team meeting for Ian's adult school reguarding moving him up to gist grafe.
I am falling asleep as I type, so I will close this up for now.
Please keep the prayers, good thoughts and positive outlooks. I thank you fou from the bottom of my overworked but still spry heart. I love each and evey one of you.
Traci
Earlier in the week, I had been in the ER for yet another excruitiating headache. This headache had some neurological effects, but they had a trauma coming in, so I was given my usual cocktail of meds and sent home. I wasn't too concerned since i had an appointment with a neurosurgeon at UCLA in less than a week. So after talking to Doctor Bob Shafa at UCLA, he is ready to get me started on treatments. So he and my new PCP spoke and decided to do an MRV on the 25th and they are checking for a blood clot in my main vein in my brain. When that comes back negative, then I will be going to UCLA for a special test. They will drill a small hole in my head and put a probe in my head to directly measure the fluid in my grain. If the fluid is consistently over 20 than the doctor will proceed with a shunt. Doesn't all that sound fun? So we need to raise some $$ 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
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.
Sunday, August 23, 2009
September
It is nearing the end of August. Ian is back in school, repeating Kindergarten, but on the fast track to the first grade. He has made so many advances over the summer that the teachers are amazed by his progress. We are so happy and proud of him. He actually got up and taught his group the other day because the teacher made a mistake and he corrected her and so she asked if he would like to teach the class about shapes, Ian jumped on the opportunity to show off his wits. He is reading books like crazy and is loving math. He adds and subtracts in his head, this kid amazes me! He is eager to learn everything he can and in every language. Now, if we can just get his hand friends (stemming) under control and keep him awake long enough to do a full day of class. So far no seizures since his medicine increase, and he even has a fancy for a new girl in his class, Pamela.... kissed her on the second day of school! what a ladies man.
So back to September. September has never been a good month for us. We did get married in September, but from that point on it seemed that month was doomed. So much so that we don't celebrate our aniversary in September, we usually wait til may or June. Crazy I know. When we rededicate our vows, we are definitely not doing it in September. Dale and I were married September 12th 1998. The following year I was diagnosed with Lupus when I woke up one morning unable to move. The next year was the 9/11 attacks. The year after that my beloved grandfather passed away from Leukemia, and he was an amazing man. He had so many amazing stories and I still talk to him and ask him what to do with Ian. Him and Ian would be best of buds, both love fast cars and airplanes and the beach. At least I know My grandfather sits next to our Father and watches over us. And it's just one thing after another that happens in september. Maybe it's the enemy, maybe it's dumb luck, but I always get a little stressed when september rolls around. This year, September starts out with my father having surgery for cancer, my brother making some irrational decisions, my mom trying to pass a huge kidney stone, and lab work up the kazoo for me and a bone density test, and hopefully a trip to UCLA if they call back tomarrow. I missed the call on Friday and had to leave another message. So now it's a game of phone tag. I also go and see a new doctor with hopefully new perspective on September 2nd. So we are going to take one day at a time and thank the Lord for every new day He brings, and if we hit a few bumps along the way, we will put our faith in God and grit our teeth and bear it and pray a lot. But we also have some exciting things happening this next month. A friends pre-wedding party (hoping I still get to make the cake). And hopefully some positive changes. So hold on world, here comes September.
So back to September. September has never been a good month for us. We did get married in September, but from that point on it seemed that month was doomed. So much so that we don't celebrate our aniversary in September, we usually wait til may or June. Crazy I know. When we rededicate our vows, we are definitely not doing it in September. Dale and I were married September 12th 1998. The following year I was diagnosed with Lupus when I woke up one morning unable to move. The next year was the 9/11 attacks. The year after that my beloved grandfather passed away from Leukemia, and he was an amazing man. He had so many amazing stories and I still talk to him and ask him what to do with Ian. Him and Ian would be best of buds, both love fast cars and airplanes and the beach. At least I know My grandfather sits next to our Father and watches over us. And it's just one thing after another that happens in september. Maybe it's the enemy, maybe it's dumb luck, but I always get a little stressed when september rolls around. This year, September starts out with my father having surgery for cancer, my brother making some irrational decisions, my mom trying to pass a huge kidney stone, and lab work up the kazoo for me and a bone density test, and hopefully a trip to UCLA if they call back tomarrow. I missed the call on Friday and had to leave another message. So now it's a game of phone tag. I also go and see a new doctor with hopefully new perspective on September 2nd. So we are going to take one day at a time and thank the Lord for every new day He brings, and if we hit a few bumps along the way, we will put our faith in God and grit our teeth and bear it and pray a lot. But we also have some exciting things happening this next month. A friends pre-wedding party (hoping I still get to make the cake). And hopefully some positive changes. So hold on world, here comes September.
Subscribe to:
Posts (Atom)
Posts
