Basically for my own sake im putting my latest "list" that I took to the doctors visit.
Im getting sores on the back of my head.
Im getting sores in my mouth alot.
My mouth feels numb or tingley almost like its asleep.
My vision is being effected again and I have to wear my glasses becuase contacts are blurry.
Pressure in back of head like im steroids again.
Nausea
Im having muscle jerks that are spaced out.
I wake up every couple of hours, cant sleep a full night again.
My moods have been better so something worked.
My fibro seems to effect my heels and my back the most.
I forgot to talk to him about the skin irratation im getting.
For those of you wondering what the hell.. Yes this is normal day to day stuff for me.
Saturday, January 7, 2012
Friday, January 6, 2012
Inner peace
In whose hand is the soul of every living thing, and the breath of all mankind. Job 12:10
I have been so frustrated and anxious this week over the house and other things and have forgot to be thankful for the little things. I look at the support group that I am apart of for ITP and remember how lucky I am. I remember the days of not being able to even lift my head up off the couch becuase I was on so much prednisone the pressure made me feel like my eyes were going to pop out when I sat up. I can now walk out of this house and know I look like me and my face not almost doubled what it normally is. People dont realize how much a weird look can depress someone. I used to hide from people I knew in the stores becuase I was so uncomfortable with my face.Dont forget the steroid acne that spreads across your forehead and across your back. The day that I dropped from 80 mg to 60 I took 3 naps and almost literally couldnt move I hurt so bad from steroid withdrawls.
I remember calling a friend just to cry and saying, dont let him raise my kids by hisself, he will need help. I had felt sick before I had found out, but I honestly thought I was going to die after I was on the prednisone about a month. I dont know why I thought I was going to, but I did. I remember thinking how weird it was that I wasnt scared, but just worried about my kids being raised the way only I can do. The treatment for this disease is worse than having it, but not treating you might die.
The psychological effects are almost to much. I will never forget my first xanax that my family doctor finally put me on for anxiety when my blood pressure was getting high. It felt like heaven just to be able to slow down mentally. Before that my kids could walk by me to fast and I would start screaming. It was just like I was on a mental mary-go-round and any more movement or more than one person talking around me would push me over the edge. There were days I literally could not think straight. I called my mom one night and sat there and tried and tried to work my bills and after an hour I gave up and went to bed. I couldnt add them all up to see how much money I had left and I even had a calculater. The nights I couldnt sleep made my anxiety so much worse, and there was many of them. After getting on the prednisone I think my every night prayer was just for inner peace.
I dont know why prednisone is the first treatment for this disease or any disease really. Any one that has been on high doses will tell you it should be the last and only in a real emergency. I am so glad it didnt work for me and I never have to worry about taking it again. I would rather sit there for 5 hours hooked up to an iv looking at abunch of other people hooked up to an iv than take that pill everyday. I remember people being all worried when I finally had my gallbladder surgery, that was a peice of cake. I would choose that surgery 20 times over taking prednisone, actually probably more like 100 times.
Theres so many awful memories that I have wrote down just to remember the bad days, to be thankful for my good day today.
I have been so frustrated and anxious this week over the house and other things and have forgot to be thankful for the little things. I look at the support group that I am apart of for ITP and remember how lucky I am. I remember the days of not being able to even lift my head up off the couch becuase I was on so much prednisone the pressure made me feel like my eyes were going to pop out when I sat up. I can now walk out of this house and know I look like me and my face not almost doubled what it normally is. People dont realize how much a weird look can depress someone. I used to hide from people I knew in the stores becuase I was so uncomfortable with my face.Dont forget the steroid acne that spreads across your forehead and across your back. The day that I dropped from 80 mg to 60 I took 3 naps and almost literally couldnt move I hurt so bad from steroid withdrawls.
I remember calling a friend just to cry and saying, dont let him raise my kids by hisself, he will need help. I had felt sick before I had found out, but I honestly thought I was going to die after I was on the prednisone about a month. I dont know why I thought I was going to, but I did. I remember thinking how weird it was that I wasnt scared, but just worried about my kids being raised the way only I can do. The treatment for this disease is worse than having it, but not treating you might die.
The psychological effects are almost to much. I will never forget my first xanax that my family doctor finally put me on for anxiety when my blood pressure was getting high. It felt like heaven just to be able to slow down mentally. Before that my kids could walk by me to fast and I would start screaming. It was just like I was on a mental mary-go-round and any more movement or more than one person talking around me would push me over the edge. There were days I literally could not think straight. I called my mom one night and sat there and tried and tried to work my bills and after an hour I gave up and went to bed. I couldnt add them all up to see how much money I had left and I even had a calculater. The nights I couldnt sleep made my anxiety so much worse, and there was many of them. After getting on the prednisone I think my every night prayer was just for inner peace.
I dont know why prednisone is the first treatment for this disease or any disease really. Any one that has been on high doses will tell you it should be the last and only in a real emergency. I am so glad it didnt work for me and I never have to worry about taking it again. I would rather sit there for 5 hours hooked up to an iv looking at abunch of other people hooked up to an iv than take that pill everyday. I remember people being all worried when I finally had my gallbladder surgery, that was a peice of cake. I would choose that surgery 20 times over taking prednisone, actually probably more like 100 times.
Theres so many awful memories that I have wrote down just to remember the bad days, to be thankful for my good day today.
Thursday, January 5, 2012
Bifocals
Nothing in my life comes without a fight and it gets old. I wonder what I did so bad that karma hates me.
I'm turning in these papers and giving up on the house. We either get it or we don't there is nothing else I can work around. I really felt like I've waited all these years to buy a house for God to hand me this one. It was like a confirmation that I am on the path he chose for me. Talk about your heart breaking being told you probably won't get it because you make to much money to qualify for this type of loan. I just don't know what to think now.
Hailey went to the eye doctor today and my poor childs eyes have both got worse. She is now at a +5.25. He said I chose good contacts to put her in, but she has so much trouble seeing up close her eye is still turning in to see things close to her. We will have to get her reading glasses to do schoolwork with when she is wearing her contacts. Due to the same problem, she also needs bifocals which for some reason broke me today. I don't think she's going to like wearing them and I don't want her to have to. I also asked him about maybe some sensory issues and he said actually I was about to get to that she has a hard time concentrating. So I checked the therapists office and they still haven't checked on insurance. All I could say is I need to get this going she needs help. Every time I go in there they are so busy. I called the school to see if they had found out any information about helping her at school. They said it would be a watch and see basis and if the eye doctor could write a letter saying how she would learn best they could adapt her to what she needs. I hope we get this fixed soon. I don't want her to fall behind because of something we can do something about.
I haven't had anymore nausea just high stress levels and body aches with the weather change. I haven't seen bruises so my platelets must still be up. At least that's one thing off my mind right now.
"Your plate is so full you can't even pick it up."
I'm turning in these papers and giving up on the house. We either get it or we don't there is nothing else I can work around. I really felt like I've waited all these years to buy a house for God to hand me this one. It was like a confirmation that I am on the path he chose for me. Talk about your heart breaking being told you probably won't get it because you make to much money to qualify for this type of loan. I just don't know what to think now.
Hailey went to the eye doctor today and my poor childs eyes have both got worse. She is now at a +5.25. He said I chose good contacts to put her in, but she has so much trouble seeing up close her eye is still turning in to see things close to her. We will have to get her reading glasses to do schoolwork with when she is wearing her contacts. Due to the same problem, she also needs bifocals which for some reason broke me today. I don't think she's going to like wearing them and I don't want her to have to. I also asked him about maybe some sensory issues and he said actually I was about to get to that she has a hard time concentrating. So I checked the therapists office and they still haven't checked on insurance. All I could say is I need to get this going she needs help. Every time I go in there they are so busy. I called the school to see if they had found out any information about helping her at school. They said it would be a watch and see basis and if the eye doctor could write a letter saying how she would learn best they could adapt her to what she needs. I hope we get this fixed soon. I don't want her to fall behind because of something we can do something about.
I haven't had anymore nausea just high stress levels and body aches with the weather change. I haven't seen bruises so my platelets must still be up. At least that's one thing off my mind right now.
"Your plate is so full you can't even pick it up."
Wednesday, January 4, 2012
Rant.
This morning I woke up still exhaused so I knew it was going to be a bad day. I got the kids off to school, come home get ready and go to my doctors appt. The doctors appointment went ok. The muscle jerks im having we decided were from being on ablify and having more serotonin in my brain than im used to. He gave me a medicine to take for about a week to see if its going to help. I went in there asking to be taken off meds and we added to it. He said give it a couple of months and that he would take me off of the pills then if I still wanted to but that my blood looked great and that he thinks that I need everything that I am currently on. I want to just be put on an immune supressant. It would be cheaper and easier on me than taking 7 meds a day I would be cut down to 2. Guess we will see how all that goes.
I called to see where we were on our loan and received awful news. They have to count overtime on Codys income so we are now 14000 over our limit for this type of loan which is the only loan I can find that will work for us that does "modular" homes even though this has a permanent foundation and been stoned in. Its a pain in the ass. Now im having to find a daycare for over 300 a week to make the cut off and it has to coincide with the amount of time I will actually spend at the school. So online classes dont even count even thought you most of the time need child care to get most of it done. Or stay up till 3 every night doing homework and then get up at 7. Makes no sense. All I could do is cry. Ive worked so hard on buying a house and we always get told no over something stupid. You either have to be in poverty or rich to get anything around here.
Speaking of poverty. I think its ridiculous what some of these girls do around here and the government looks the other way or just to stupid to realize that they are screwing them over. Dont have 3 planned kids on our tax dollars and then NOT GET MARRIED on purpose just to not lose your fucking food stamps. Oh and then while your pocketing all of your basically common law "boyfriends" checks move into a freaking mansion. Its people like that that are the reason that they are taking benefits from people that really need them. Get off your ass and get a job and quit collecting tanf and food stamps for 5+ years popping out kids were paying for or step up and get married and take care of your shit like you are supposed to. Dont get me wrong, when people need help you just need help. I was 20 and Cody was 19 when Hailey was born of course she was on medicaid, and then Cody got laid off like a month before I had Landen so he actually ended up being on medicaid too. But before that we were married and I had worked out a payment plan with the hospital that we couldnt afford to pay but he made to much to get help on anything. I know someone that REALLY does need medical help and needs to be on medicaid and works her ass off to pay for her and her kids, but its so hard for an adult to get on it and she makes to much making barely abunch minimum wage. Some people should be ashamed of themselves.
........ to accept the things I can not change......
Tuesday, January 3, 2012
Overdrive
I have been a busy little bee in my head here lately! I have made 2 decisions in the last 2 days. First of all, I am going to finish my degree off with a bachelors in science- pyschology and a masters in science- genetic counseling. Most people have no clue what a genetic counselor is. They are people that can test your genetics for diseases and stuff like that on your babies and neonatals too. If you had health issues that are genetic they could run test and tell you how probable it is that they will return or that you will give it to your kids, but this isnt the part of the job I want. I want to work in an oncology center and/or rheumatology center with people that are trying to figure out their diagnosis (like me) and help people with cancers understand their diagnosis and test for others and give them the probablity of a relapse or anything else. From experience, I know that a rheumtologist center needs a genetic counselor becuase you know something autoimmune is wrong and your being diagnosed with more than one thing, there are so many questions that you have and tests you want to talk about and just all these things running through your mind, but by the time you get to the doctor you have forgot half of them or dont have time to talk about them. Or like my oncologists does to me, if I ask something he doesnt want to answer becuase of how I may feel about it he justs says, "Well, lets just see what the test results are and we will talk about it from there." I freak out less knowing exactly what may happen to me and exactly what they are looking for. I want someone that is there to be my advocate and friend through this process than can answer my questions. I looked up what classes I need to get started with all this I will be taking speech to finish off my associates, 2 different psychologys and general chem. I can take all these at Frank Phillips online but will probably have to start online classes at Wayland Baptists next semester for my bachelors.
I also decided that we will be tiling the floors in the new house before we ever move in. I am going to put a concrete board over the linolium er however ya spell it and tile over it instead of trying to scrap everything up from the floor thats already there. We would have to put the board down anyways might as well skip a part. Then im going to put hard wood floors through the living room and dining room, and tile the front bathroom which has carpet in it right now. Im not about to let Landen have the bathroom with carpet so make my house smell like pee. We know people that know how to do it so it will really just cost us the materials becuase people want an arm and a leg to tile a room. I got a quote just the little bitty bathroom and kitchen would be 1500-2000 and thats saying the kitchen was just 150 sq ft but I figured out its more like 225. The materials for the bathroom and kitchen will maybe cost us alittle over 500 im not paying 1500 in labor thats ridiculous. Im really excited to get to make this home mine and do it exactly the way I want it. Cody could care less what I do buts hes a little sore that im painting ALL the paneling which means the whole dang house! He likes the natural look of the wood or some crap. To me its to much wood and its outdated. I want normal walls. I will have to fill in the cracks of the paneling and then paint. I have ideas for every room but still dont know about the kids bathroom, I need to start looking around for ideas that would work for a kids/guest bath. And I hope we get to use the hot tub at least once this winter!!! Its gonna take some cleaning since it hasnt been used in like AT LEAST 6 years but we can do it and if my friends want to get in it ill have some help cleaning it lol. I also will have to put a border on the pond thats in the back yard. I have no idea why they took the border down but it needs one. I think I may take the deck all the way out to the pond and put flowers around the border of the pond. I havent decided fully what I will do with it yet. Any ideas?
Hopefully we know exactly what is going on with the loan tomorrow or the next day. If the credit score isnt in tomorrow I may choke someone.=)
Im so excited for this FANTASTIC year ahead of me! After 2011 I deserve a break.
I also decided that we will be tiling the floors in the new house before we ever move in. I am going to put a concrete board over the linolium er however ya spell it and tile over it instead of trying to scrap everything up from the floor thats already there. We would have to put the board down anyways might as well skip a part. Then im going to put hard wood floors through the living room and dining room, and tile the front bathroom which has carpet in it right now. Im not about to let Landen have the bathroom with carpet so make my house smell like pee. We know people that know how to do it so it will really just cost us the materials becuase people want an arm and a leg to tile a room. I got a quote just the little bitty bathroom and kitchen would be 1500-2000 and thats saying the kitchen was just 150 sq ft but I figured out its more like 225. The materials for the bathroom and kitchen will maybe cost us alittle over 500 im not paying 1500 in labor thats ridiculous. Im really excited to get to make this home mine and do it exactly the way I want it. Cody could care less what I do buts hes a little sore that im painting ALL the paneling which means the whole dang house! He likes the natural look of the wood or some crap. To me its to much wood and its outdated. I want normal walls. I will have to fill in the cracks of the paneling and then paint. I have ideas for every room but still dont know about the kids bathroom, I need to start looking around for ideas that would work for a kids/guest bath. And I hope we get to use the hot tub at least once this winter!!! Its gonna take some cleaning since it hasnt been used in like AT LEAST 6 years but we can do it and if my friends want to get in it ill have some help cleaning it lol. I also will have to put a border on the pond thats in the back yard. I have no idea why they took the border down but it needs one. I think I may take the deck all the way out to the pond and put flowers around the border of the pond. I havent decided fully what I will do with it yet. Any ideas?
Hopefully we know exactly what is going on with the loan tomorrow or the next day. If the credit score isnt in tomorrow I may choke someone.=)
Im so excited for this FANTASTIC year ahead of me! After 2011 I deserve a break.
Sunday, January 1, 2012
I choose
2011 is a year I choose not to remember by my marriage almost falling apart twice, but that I made my 4 year anniversary and our family is still in tact. I choose not to remember it by being diagnosed with an incurable disease, how scared I was or that I thought I really might die, but that I am dealing with this auto immune disease.
I choose to be greatful that this disease is mine and not my kids or anyone else I love. The good thing about having control issues is that I can be happy that this is my issue and I dont feel helpless that its not me. I would take the peoples I love pain away in a heart beat and maybe thats what God is doing, giving me their pain they may would have had and manifesting it in my disease and that is fine with me. But who knows?
I choose to remember that the information I now have through experience and everything I have taught myself can help others who have questions and may be going through similar experiences.
And very importantly, I choose to remember that I need to listen to my body and when I dont feel good something is really wrong. I choose to know that good days are few and far between and to make the most of them.
I choose to accept this for what it what it is, managable.
I choose to be greatful that this disease is mine and not my kids or anyone else I love. The good thing about having control issues is that I can be happy that this is my issue and I dont feel helpless that its not me. I would take the peoples I love pain away in a heart beat and maybe thats what God is doing, giving me their pain they may would have had and manifesting it in my disease and that is fine with me. But who knows?
I choose to remember that the information I now have through experience and everything I have taught myself can help others who have questions and may be going through similar experiences.
And very importantly, I choose to remember that I need to listen to my body and when I dont feel good something is really wrong. I choose to know that good days are few and far between and to make the most of them.
I choose to accept this for what it what it is, managable.
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