Monday, January 30, 2012
Tuesday, January 24, 2012
Just a name- The day I was diagnosed.
The muscle spasms have stopped completly only for my body to attack myself in different ways. I was getting rashes constantly that went as fast as they came and sores in my mouth. I finally got a rash that burnt so bad I decided I couldnt wait till March to talk to the rheumatologists about it.
The list of symptoms that were given to the nurse before the nurse practioner walked in was rashes on various parts of my body, mainly face, neck, legs, and ankles, mouth ulcers, fatigue and hair loss. The nurse practioner walked in and immediately said, "Do you have lupus?" I said, well I hope that you diagnose me and help me. She asked that just looking at the marker of lupus butterfly rash on my face. She then looked at the notes that I had given to the nurse, asked some more questions. One was, have you ever had any miscarriages. I didnt completely know the answer to that question so I explained. Before I had my 2 healthy babies I had 2 months in a row of positive pregnancy test even when I was bleeding. She explained that pregnancy test can be positive for up to a month after a miscarriage. I said that the second month it scared me so I went to the hospital and they said that my blood didnt show it and theres no way I was having a miscarriage. She said that my blood levels would already be to low for it to be in a blood test and that I had probably miscarried at least the first month. I had always just assumed the test were wrong and never really mentioned it to doctors when asked if I had any miscarriages. I guess now I know that me and Cody have lost at least one baby before Hailey. This information made a difference on the blood test that she was going to run on me. Im sure some of you that have had trouble carrying a baby and took blood thinners know what an antiphosphilid (sp?) spelling test is. She was testing my blood to see how thick it was. I said well wouldnt that be the opposite of the ITP? (auto immune low platelets) She said it can actually cause low blood platelets becuase the blood is so thick. The crazy thing is that I know my blood is thick from a blood test Dr. Weber ran like last month. We will see what that test says.
She then said the words I have been waiting to here. "We are going to help you." "So youre diagnosing and treating me with lupus?" "I sure am diagnosing you."
I will now be taking an antimalarial drug. Malaria from what I know is a disease that is found in other countries. I looked up why this helps lupus and found this information.....
----- Antimalarials block UV light from damaging skin; have an anti-inflammatory effect; lower cholesterol levels; inhibit clotting; block cytokines, which promote inflammation; & most importantly, alter the acid-base of the cells, which limits their ability to process antigens. (If antigens were processed, this would lead to the creation of unnecessary antibodies.) Antimalarials do not lower blood counts, or make patients more susceptible to infection.----
I was advised to stay out of the sun, becuase uv rays cuases flares in lupus, away from alcohol, and have low stress levels (yeah right).
I was given medicine for my fingers and feet turning white/blue when im cold, which is some syndrome name that goes with lupus but I cant spell it. I was given a cream for the rashes, becuase when it was suggested I take a few days of prednisone I said UH no.
She also explained that the rashes are from inflammation of my blood vessels and that I probably feel like I have a UTI when I dont from inflammation. The muscle relaxers did not work for me with the muscle spasms becuase lupus can attack your central nervous system and cause seizure activity, which would be nerves, not muscles.
For most people the news of having lupus would be devastating, but for someone that knows something is wrong and that I wasnt doing anything about it its relief. I've had it for a long time, so its nothing new for me, just a name.
The first picture is a picture of the butterfly rash. Its on my forehead, across my cheeks and my nose. It looks like a butterfly. The second picture is of a light rash on my hand, and the third of the rashes on my ankles.
The list of symptoms that were given to the nurse before the nurse practioner walked in was rashes on various parts of my body, mainly face, neck, legs, and ankles, mouth ulcers, fatigue and hair loss. The nurse practioner walked in and immediately said, "Do you have lupus?" I said, well I hope that you diagnose me and help me. She asked that just looking at the marker of lupus butterfly rash on my face. She then looked at the notes that I had given to the nurse, asked some more questions. One was, have you ever had any miscarriages. I didnt completely know the answer to that question so I explained. Before I had my 2 healthy babies I had 2 months in a row of positive pregnancy test even when I was bleeding. She explained that pregnancy test can be positive for up to a month after a miscarriage. I said that the second month it scared me so I went to the hospital and they said that my blood didnt show it and theres no way I was having a miscarriage. She said that my blood levels would already be to low for it to be in a blood test and that I had probably miscarried at least the first month. I had always just assumed the test were wrong and never really mentioned it to doctors when asked if I had any miscarriages. I guess now I know that me and Cody have lost at least one baby before Hailey. This information made a difference on the blood test that she was going to run on me. Im sure some of you that have had trouble carrying a baby and took blood thinners know what an antiphosphilid (sp?) spelling test is. She was testing my blood to see how thick it was. I said well wouldnt that be the opposite of the ITP? (auto immune low platelets) She said it can actually cause low blood platelets becuase the blood is so thick. The crazy thing is that I know my blood is thick from a blood test Dr. Weber ran like last month. We will see what that test says.
She then said the words I have been waiting to here. "We are going to help you." "So youre diagnosing and treating me with lupus?" "I sure am diagnosing you."
I will now be taking an antimalarial drug. Malaria from what I know is a disease that is found in other countries. I looked up why this helps lupus and found this information.....
----- Antimalarials block UV light from damaging skin; have an anti-inflammatory effect; lower cholesterol levels; inhibit clotting; block cytokines, which promote inflammation; & most importantly, alter the acid-base of the cells, which limits their ability to process antigens. (If antigens were processed, this would lead to the creation of unnecessary antibodies.) Antimalarials do not lower blood counts, or make patients more susceptible to infection.----
I was advised to stay out of the sun, becuase uv rays cuases flares in lupus, away from alcohol, and have low stress levels (yeah right).
I was given medicine for my fingers and feet turning white/blue when im cold, which is some syndrome name that goes with lupus but I cant spell it. I was given a cream for the rashes, becuase when it was suggested I take a few days of prednisone I said UH no.
She also explained that the rashes are from inflammation of my blood vessels and that I probably feel like I have a UTI when I dont from inflammation. The muscle relaxers did not work for me with the muscle spasms becuase lupus can attack your central nervous system and cause seizure activity, which would be nerves, not muscles.
For most people the news of having lupus would be devastating, but for someone that knows something is wrong and that I wasnt doing anything about it its relief. I've had it for a long time, so its nothing new for me, just a name.
The first picture is a picture of the butterfly rash. Its on my forehead, across my cheeks and my nose. It looks like a butterfly. The second picture is of a light rash on my hand, and the third of the rashes on my ankles.
Sunday, January 22, 2012
this and that
Oh I feel like shit.
I decided to be spunky last night and go out with Cody. I am paying for it with a headache and nausea. I dont know if its all a hang over or becuase I forgot my meds last night, neither one are something I want to try again. I dont know how I used to do this!
Lets see what all has happened since last time I posted. My dog wiped his ass on my new furniture? O yeah I got new furniture. And yes I was pissed. Dad said, well damn dont you ever give him any tiolet paper? lol My mom got me the quilt ive been wanting for my birthday too!
I finally found out an idea on how to put the pictures I want on canvas. They make this stuff at walmart to transfer pictures to im assuming whatever you want? A family member made a quilt with it. Ive decided that if mom wants to I want to make 2 family quilts one for me and one for her. I have no idea how to sew so actually it will be here making the quilts lol so I think all my ideas are stuffing my new living room full before we even get into it. Ive started buying a bunch of picture frames for the family tree and other things and I need to go through the old family pictures to decide which ones im going to go put on canvas, and which ones will go on the quilt. Im going to buy one of those stand things for the quilts that way I can kind of display it in the living room, I dont want to actually use it.
Ive been getting alot of rashes that come and go, I got one on my ankle that burned like a sob. I dont know if its from my auto immune issues or what, but its no fun. Im glad I have only had that one that hurt. Ive been getting alot of like little blister/ ulcer type things in my mouth, those im pretty sure are auto immune.
I decided to be spunky last night and go out with Cody. I am paying for it with a headache and nausea. I dont know if its all a hang over or becuase I forgot my meds last night, neither one are something I want to try again. I dont know how I used to do this!
Lets see what all has happened since last time I posted. My dog wiped his ass on my new furniture? O yeah I got new furniture. And yes I was pissed. Dad said, well damn dont you ever give him any tiolet paper? lol My mom got me the quilt ive been wanting for my birthday too!
I finally found out an idea on how to put the pictures I want on canvas. They make this stuff at walmart to transfer pictures to im assuming whatever you want? A family member made a quilt with it. Ive decided that if mom wants to I want to make 2 family quilts one for me and one for her. I have no idea how to sew so actually it will be here making the quilts lol so I think all my ideas are stuffing my new living room full before we even get into it. Ive started buying a bunch of picture frames for the family tree and other things and I need to go through the old family pictures to decide which ones im going to go put on canvas, and which ones will go on the quilt. Im going to buy one of those stand things for the quilts that way I can kind of display it in the living room, I dont want to actually use it.
Ive been getting alot of rashes that come and go, I got one on my ankle that burned like a sob. I dont know if its from my auto immune issues or what, but its no fun. Im glad I have only had that one that hurt. Ive been getting alot of like little blister/ ulcer type things in my mouth, those im pretty sure are auto immune.
Friday, January 20, 2012
Bitch, bitch, and bitch some more.
I checked my status on my disability today and they said they needed a verification of a name change. So I load up my kids, mom, and my marriage license and off to Pampa we go. While im in there waiting this old lady comes in and asks me to help her with the computer to print her a wait number. I help her and she comes and sits beside me. She starts telling me about why shes up there and the trouble she keeps having. She worked for the air force base and she gets 200 every month from the government I guess in retirement? Every few months she has to go up there and argue why she needs that 200 dollars. They also had cut her ssi down to 500 which wasnt enough to pay her bills. Im looking at this lady who is probably in her early 80's having to defend her 700 a month to the government every few months that made an honest living while she could. How sad is that that our government has came to helping illegals and crack whores and taking money from the people that really need it.
After they called my number I signed a release of medical records where they could get my records from my basketball team of doctors and he kind of explained what is probably going to happen. I have to wait 2 years either from the day that I become eligible or from when my disability was discovered and then I will be granted medicare IF im found disabled. In order to get help now I will have to qualify for SSI which is social secrurity income (I think) and the cut off is 2800 a month. Ok So. if they let me NOT count gross income and let me deduct my health insurance premuims then ive got that made. If they just let me use gross and let me use ALL of my medical cost not just my insurance premiums, ive got it made. If they dont let me do any of that, in short, im fucked.
My night tonight was spent trying to get a prescription that if I dont have i will have withdrawals from. I need to get my abilify refilled and since I havent met my deductible the cost would be 560 something. They said I could pay half now and work something out for the rest, I cant even afford to do that. I still have to feed my family and pay my sky high insurance ya know people? I know I bitch about this alot, but seriously. All these people that live with their boyfriends and wont get married becuase they will lose their food stamps and medicaid need to get a freaking clue about what NEEDING help really is and work their asses off like my husband to provide for their families. The taxes that my husband pays shouldnt have to go to everyone else when we honestly need the help. Our gross income a week is 1080 and we see under 800 of that. AND have yall been to UNITED lately? We cant afford the cost of food and gas right now, let alone the damn 500 dollar pills. Hopefully the discount card I have we can make work tomorrow and I can get them alot cheaper. I dont even want the money every month, I just need help with my medical cost. Not to mention Haileys glasses that we had to order and her reading glasses and contacts and her therapy that we cant afford. Money sure is a downer.
And im not saying that everyone on medicaid and food stamps needs to get off of it. I know one person that does live with her boyfriend that works his ass off and makes alright money. But I also know the child she has NEEDS the medicaid for his health care costs and she works her ass off in school trying to make something of herself. They are trying to make a life for theirselves, not just sitting around having kids on purpose and planning their lives off of medicaid and food stamps and pocketing the checks to live in a mansion.
After they called my number I signed a release of medical records where they could get my records from my basketball team of doctors and he kind of explained what is probably going to happen. I have to wait 2 years either from the day that I become eligible or from when my disability was discovered and then I will be granted medicare IF im found disabled. In order to get help now I will have to qualify for SSI which is social secrurity income (I think) and the cut off is 2800 a month. Ok So. if they let me NOT count gross income and let me deduct my health insurance premuims then ive got that made. If they just let me use gross and let me use ALL of my medical cost not just my insurance premiums, ive got it made. If they dont let me do any of that, in short, im fucked.
My night tonight was spent trying to get a prescription that if I dont have i will have withdrawals from. I need to get my abilify refilled and since I havent met my deductible the cost would be 560 something. They said I could pay half now and work something out for the rest, I cant even afford to do that. I still have to feed my family and pay my sky high insurance ya know people? I know I bitch about this alot, but seriously. All these people that live with their boyfriends and wont get married becuase they will lose their food stamps and medicaid need to get a freaking clue about what NEEDING help really is and work their asses off like my husband to provide for their families. The taxes that my husband pays shouldnt have to go to everyone else when we honestly need the help. Our gross income a week is 1080 and we see under 800 of that. AND have yall been to UNITED lately? We cant afford the cost of food and gas right now, let alone the damn 500 dollar pills. Hopefully the discount card I have we can make work tomorrow and I can get them alot cheaper. I dont even want the money every month, I just need help with my medical cost. Not to mention Haileys glasses that we had to order and her reading glasses and contacts and her therapy that we cant afford. Money sure is a downer.
And im not saying that everyone on medicaid and food stamps needs to get off of it. I know one person that does live with her boyfriend that works his ass off and makes alright money. But I also know the child she has NEEDS the medicaid for his health care costs and she works her ass off in school trying to make something of herself. They are trying to make a life for theirselves, not just sitting around having kids on purpose and planning their lives off of medicaid and food stamps and pocketing the checks to live in a mansion.
Thursday, January 19, 2012
Rumor mill
I was just reminded of what it was like to be a kid. I can not imagine having to go through this and having to go to high school. I didnt go out in public and hid from people when I did, and im 25 years old. Being sick can do all kinds of things to a person including depression. I hope all the kids going through a disease can remember that someday they will be out of high school and all the things people say wont matter. And that some day they will learn a lesson and think back and be sorry, even if they never say it. I thankfully never heard any rumors going around about me, although im sure there were some, now that im past it all I would be able to tell them is "Eat my shit!" =)
Tuesday, January 17, 2012
Denied
I received my letters from health and human services today, denied. OF COURSE. I called to see what all deductions they could use and just child care. I think its bullshit that Obama Care is wanting to penalize people for not having insurance but you cant deduct the cost off to get help when you need it. My insurance will not pay for any kind of speech therapy for Hailey unless its from an injury, and its not. So she wont be able to take that, just the occupational therapy which they will pay 80 %, AFTER I meet her 600 deductible. Between my meds, doctors appointments, her glasses, and therapy evaluation, if we werent about to get our taxes I dont know how we would eat. But all the government can look at is the amount of money we never see before taxes are taken out. Oh yeah and I was over becuase I have a half decent vehicle. What bullshit. If they would just crack down on the people that lay around planning their kids on medicaid and how much more they will get in food stamps while buying their mansions with their boyfriends checks that they literally pay no actual living expenses, maybe we could get the help we need.
Anyways, so after I figured out that I did put in the wrong application for disability, and getting alittle help from a nice lady on facebook, I think I finally got the right application in. It took me awhile to fill out all the medical information but hopefully it will be worth my efforts. I really need the help with my medical bills.
Anyways, so after I figured out that I did put in the wrong application for disability, and getting alittle help from a nice lady on facebook, I think I finally got the right application in. It took me awhile to fill out all the medical information but hopefully it will be worth my efforts. I really need the help with my medical bills.
wEiRd!
So last night I had the weirdest dream! Me and mom were driving somewhere in something like a tahoe and when we stopped I noticed we ran over something. I looked down there and it was a tiger but it was still alive! Cody went to get a gun to end its misery and next thing I know it was stuck to my side! I was FREAKING out and screaming for cody to hurry and shoot it and then when he went to I wouldnt let him. Mom started laughing and peeled it right off of me. It wasnt attacking me or anything it was just like it was velcroed to my side or something. It was one of those dreams that you wake up sitting up looking around like WTF. I got up at 5 in the morning to look up the meaning. The best I have found is that Tiger means something strong in my life. So im taking it literally meaning im scared to let go of something that was once strong in my life but is now weak and dying. And yes i know exactly what it is.
Monday, January 16, 2012
Small town dream*
I realized today that I am a small town kid with small town dreams. I just want to be happy and healthy and that will be successful to me! There are days like the other day when im not happy at all and then there are days like today that im content just being. January and February are usually good to me, and im going to make sure they are again =)
Saturday, January 14, 2012
fail me
I dont understand why life gave me such a shitty hand. My life is been one big struggle after another and I get tired of fighting for everything. I dont know why I even try to hope for anything or believe something becuase it will always fail me and let me down. Ive done the best I could with what I have... and it will never be enough.
Thursday, January 12, 2012
Gone With The Wind
To add on to the last post...
No matter what house I end up in, even if its this one, I have big plans for the pictures from the movie Gone With The Wind. That will always be my all time favorite book and movie.
No matter what house I end up in, even if its this one, I have big plans for the pictures from the movie Gone With The Wind. That will always be my all time favorite book and movie.
Where I need to be
OK so. We found out the reason that we have never heard anything back on the short sale house on Davenport. We had talked about offering them pay off instead of waiting for the short sale, but decided we would get a good deal to just wait on it. Some idiot in the middle of that assumed that we made another offer and cancelled our offer to Fannie Mae. I have really bad luck.
We also found out that it will probably be the end of next week before we know anything on the other loan. I guess the underwriter has to do almost the whole thing manually and she also does house inspections. So it takes her a whole day just to go through one application and thats when she can stay in the office and not do inspections. So its going to be awhile on that loan.
I decided to give it all to God. If it is in his plans for us to buy a house anytime soon or even one of these 2 houses something will work out without me worrying about it. He will either open doors or shut them according to what he wants for us.
Thank you Jeanna for the song. It told me where I need to be.
We also found out that it will probably be the end of next week before we know anything on the other loan. I guess the underwriter has to do almost the whole thing manually and she also does house inspections. So it takes her a whole day just to go through one application and thats when she can stay in the office and not do inspections. So its going to be awhile on that loan.
I decided to give it all to God. If it is in his plans for us to buy a house anytime soon or even one of these 2 houses something will work out without me worrying about it. He will either open doors or shut them according to what he wants for us.
Thank you Jeanna for the song. It told me where I need to be.
Wednesday, January 11, 2012
Waiting...
So we still dont know anything on our loan, I guess this is going to be a long frustrating process. I was really hoping it was going to go easy, and start this year off good. So much for that.
I am still having the muscle jerks. Yesterday I had one and it jerked me wrong and hurt my back. Ive been having headaches too. I called Dr Weber and Ramos and they called me back pretty quick. Ramos said take 3 muscle relaxers a day and if that didnt work they were going to refer me to a neurologists. Why arent they more worried with whats causing them? Dr Webers wanted me referred so they made me an appointment but the first open one in Amarillo is in May. I checked on my insurance and was making sure they appointment I have is in my network, and thought about going to Lubbock. I made a few calls and they can get me in this month. Dr Webers office still has to talk to him about referring me somewhere else. I dont know if im more scared that I am going to need the neurologists or if I need him its going to take so long to get in. If something is wrong that the neurologists finds and means anything to him, it will mean that my central nervous system is being affected by "whatever" autoimmune is wrong with me.
I decided today that I need a job to keep my mind of things, so tomorrow im going to go put a few applications in and try to see if I can actually get a sitter for me to work. I hope this year gets better, becuase if not this is going to suck.
I am still having the muscle jerks. Yesterday I had one and it jerked me wrong and hurt my back. Ive been having headaches too. I called Dr Weber and Ramos and they called me back pretty quick. Ramos said take 3 muscle relaxers a day and if that didnt work they were going to refer me to a neurologists. Why arent they more worried with whats causing them? Dr Webers wanted me referred so they made me an appointment but the first open one in Amarillo is in May. I checked on my insurance and was making sure they appointment I have is in my network, and thought about going to Lubbock. I made a few calls and they can get me in this month. Dr Webers office still has to talk to him about referring me somewhere else. I dont know if im more scared that I am going to need the neurologists or if I need him its going to take so long to get in. If something is wrong that the neurologists finds and means anything to him, it will mean that my central nervous system is being affected by "whatever" autoimmune is wrong with me.
I decided today that I need a job to keep my mind of things, so tomorrow im going to go put a few applications in and try to see if I can actually get a sitter for me to work. I hope this year gets better, becuase if not this is going to suck.
Sunday, January 8, 2012
Cancer and auto immune diseases
So I have been asked several times since my diagnosis about lupus and autoimmune diseases being cancer. No they are not cancer. The difference in lupus and other auto immune diseases and cancer is.. in cancer a "bad" cell multiplies so fast that your immune system can not take care of it on its own. In auto immune diseases we have "confused" cells that flag healthy cells to be killed becuase they are confused and cant tell they are healthy. Basically a type of allergic reaction to our own bodies instead of an environmental source. The treatments for cancer and autoimmune can sometimes be the same depending on how severe your auto immune disease is. The goal of chemo and things like that is to kill cells that are bad or confused but from what I know chemo actually kills all cells. The rituxan treatment that I took and was allergic to is actually a lymphoma treatment and targets killer B cell production I THINK. The treatment that I want to try instead of all these pills im on is basically like a light chemo but I dont know if I will be able to take it becuase it messes with your bone marrow. Not everyone with lupus has low platelets and blood like that, some will have other blood issues or no blood issues. That is why I have not been officially diagnosed with lupus is becuase it manifest its self so different and with so many different symptoms in everyone that it is very hard to diagnose. If anyone knows anymore to add or anything that im wrong about please feel free to correct me, I want to understand this as much as possible.
Saturday, January 7, 2012
Change
I hope God has it in his plans to make us home owners soon. I have new house and decorating fever so bad I had to rearrange my living room.
My list
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.
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.
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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