Thursday, March 22, 2012
Monday, March 19, 2012
thunderstorms and therapy
House hunting has come to a complete stop.We are just going to wait until we find one in the neighborhood we are already in, and if we cant find one better than the one we are in, were just going to buy it.
On a way good note, Haileys therapy seems to be making a difference finally, to bad she only has maybe 10 more visits that insurance will pay for.Ive noticed shes calm down a little and you can actually have a conversation on a 5 year old level with her. Before she was to bouncy and didnt concentrate long enough to have a full conversation as long as she should at her age. Shes getting better about keeping her glasses at her eye level instead of letting them slip to the end of her nose too.
To those that check this every so often I havent been writing becuase I have been so busy with the store we are about to open. Me, Tisha, and Christy bought a consignment childrens store and its going pretty good getting it together. We are going to have kids clothes newborn- 16, tutus, diaper cakes, bows, baby supplies, and maternity clothes. I think I named it all? All the little things we need to make sure its like we want it are starting to add up to quiet a bit of money but hopefully it does great and will be worth the time and money we have put into it! The store will be good for me since I will probably never be able to keep a normal job because of all my doctors appointments and things that come on suddenly. It will also help me be able to qualify for disability hopefully. Some of you that read this might remember that I did not qualify becuase I hadnt worked enough to put in enough taxes to qualify for it. Stupid reason not to qualify, but hey its the government.
It's hailing and raining like crazy and I can not sleep. So Iam up thinking about things that should never cross my mind, and writing isnt helping me. Imiss alot of things about the way things used to be.
On a way good note, Haileys therapy seems to be making a difference finally, to bad she only has maybe 10 more visits that insurance will pay for.Ive noticed shes calm down a little and you can actually have a conversation on a 5 year old level with her. Before she was to bouncy and didnt concentrate long enough to have a full conversation as long as she should at her age. Shes getting better about keeping her glasses at her eye level instead of letting them slip to the end of her nose too.
To those that check this every so often I havent been writing becuase I have been so busy with the store we are about to open. Me, Tisha, and Christy bought a consignment childrens store and its going pretty good getting it together. We are going to have kids clothes newborn- 16, tutus, diaper cakes, bows, baby supplies, and maternity clothes. I think I named it all? All the little things we need to make sure its like we want it are starting to add up to quiet a bit of money but hopefully it does great and will be worth the time and money we have put into it! The store will be good for me since I will probably never be able to keep a normal job because of all my doctors appointments and things that come on suddenly. It will also help me be able to qualify for disability hopefully. Some of you that read this might remember that I did not qualify becuase I hadnt worked enough to put in enough taxes to qualify for it. Stupid reason not to qualify, but hey its the government.
It's hailing and raining like crazy and I can not sleep. So Iam up thinking about things that should never cross my mind, and writing isnt helping me. Imiss alot of things about the way things used to be.
Wednesday, March 14, 2012
Monday, March 12, 2012
Check up
I had a check up today and everything is going so good I didnt even have to have blood work done! YAY
I guess that guy that hit me is trying to say that it was my fault to his insurance. So hopefully they get the police report and know its his fault and I dont have to deal with it any further.
I guess that guy that hit me is trying to say that it was my fault to his insurance. So hopefully they get the police report and know its his fault and I dont have to deal with it any further.
Monday, March 5, 2012
Bad day
I woke up late, had a wreck, and cleaned up throw up all before 10:30 this morning. Thank goodness the rest of my day was boring.
I was leaving the school from dropping hailey off and a truck pulled out from a parking spot and the front of my car and of course by the time I got stopped it dragged down the side of my car. The guy felt really bad I'm glad he wasn't a dumbass. We called the police and took pictures and since it is private property he didn't get a ticket. I already took it to several places and the front panel can't be fixed but the doors and back panel have to be replaced, ending up at about 5 grand. Thank goodness he had insurance.
I was leaving the school from dropping hailey off and a truck pulled out from a parking spot and the front of my car and of course by the time I got stopped it dragged down the side of my car. The guy felt really bad I'm glad he wasn't a dumbass. We called the police and took pictures and since it is private property he didn't get a ticket. I already took it to several places and the front panel can't be fixed but the doors and back panel have to be replaced, ending up at about 5 grand. Thank goodness he had insurance.
Sunday, March 4, 2012
Didnt get the house
We found out Friday that fannie mae their own appraisal done and want what it's worth, which wouldn't even be considered a short sale. Back to house hunting! I had a check up with dr weber on Wednesday and doing great... One step closer to getting off cymbalta!
Monday, February 27, 2012
Sunday, February 26, 2012
Heres to me!
I had such a great day. I went and done some stuff for a new and exciting experience for me and my friends. I almost remember what its like to be normal again. I havent been tired or nauseated all day! Heres to beating Lupus, ITP, Fibromyalgia, and everything else that comes my way!
Wednesday, February 22, 2012
Tisha & patience
For those of you wondering, no we still havent heard a yes or no on the house. I was told yesterday we have to send some more papers in about the taxes and stuff on the house becuase the ones we sent were to old. They were just from November, I dont think they change anything on the taxes until late in the year so I dont know what the difference is. Either way, if they are wanting completely updated papers maybe they are going to accept our offer! Our closing date will still be March 6 if it all possible. So basically if its yes im going to have alittle over a week to get an inspection done, and pack a house, but I will gladly do it! =)
Sunday, February 19, 2012
February
This month has been hard on me for memories. Ive always had blow out birthday parties, and great memories during this month. I guess its hitting me hard becuase instead of a blast im dealing with being sick and accepting that my life has changed and I cant go back.Well between that and Jason Aldeans song fly over states.
I wish I could go back and just relive moments, I wouldnt go back ive been to far now. But just those few moments....
Monday, February 13, 2012
What the pills do
Im up for the second night in a row becuase I ran out of xanax. I guess my body is addicted and so im guessing insomnia is a side effect of coming off of it.
The cymbalta and abilify can really fuck you up. Getting on them and coming off of them can mess with your mind. I had emotional issues when I went from the 30 to 60 of the cymbalta, and when I ran out of the abilify and didnt have the 600 to pay for it. I dropped back down to 30 of the cymbalta and back on the abilify and now im fine. I wish I didnt have to do any of this.
The cymbalta and abilify can really fuck you up. Getting on them and coming off of them can mess with your mind. I had emotional issues when I went from the 30 to 60 of the cymbalta, and when I ran out of the abilify and didnt have the 600 to pay for it. I dropped back down to 30 of the cymbalta and back on the abilify and now im fine. I wish I didnt have to do any of this.
Thursday, February 9, 2012
ouch
The weather changed again today and my body is killing me. Especially my hand and wrist.
We heard some stuff back on the house today. We have to sign a short sale ammendum and have the seller sign too. Everyone is just working on getting their paperwork together while we are waiting on Fannie Mae to make a decision, hopefully soon and hopefully yes. Our heater quit working again yesterday, instead of heating it, it was cooling it and by the time i noticed i was getting cold it was 69 in here. Im glad it didnt happen in the middle of the night like it usually does.
I took the kids to the doctor, both have to be on antibiotics just in case its not viral and she cant go back to school till Monday. Im ready for warm weather and no sickness. He did say he had his first 2 cases of flut this morning, and flu season is almost over! Hopefully it is going to be mild like it has been!
Wednesday, February 8, 2012
Meteorology!
I finally got my ears peirced! Yes im 26 and yes ive had other peircings. I dont know what struck me but I was in Wal mart and just said, think they can peirce my ears right now? The next day I went to Ink Art for more. Ive also decided im going to go a tat, but the details will be a secret until I get it!
Ive been feeling good except for my body hurting last night. I told Cody that the weather must be about to change becuase I was hurting and he said "yeah, its supposed to snow tonight." I should be a meterologists =) I found a rash on the back of my neck, which im guessing is causing some hair loss along with just lupus doing it. I would like to keep my hair. Damn body.
Ive been feeling good except for my body hurting last night. I told Cody that the weather must be about to change becuase I was hurting and he said "yeah, its supposed to snow tonight." I should be a meterologists =) I found a rash on the back of my neck, which im guessing is causing some hair loss along with just lupus doing it. I would like to keep my hair. Damn body.
Thursday, February 2, 2012
They call me red
So. Yah my hair is way red. Way way red. Think I'll stick to my other red from now on.
I finally got my meds how I want them I think. We lowered that stupid makes you depressed when you weren't cymbalta.and I'm back on abilify which helps my energy lots. I have another sore in my mouth but I guess it will take the lupus meds awhile to effect me. I'm tired of taking pills. I don't want to be stuck on these the rest of my life.
For the things I can't say and to the people i need to say it too...on my blog because it's public again.. I love y'all and didn't mean to hurt y'all. I guess dr weber was right when he says I was losing control of everything around and in me and that was my irrational way of gaining it back.
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.
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