I wanted to make sure I was offering different sites for others to do their research. I found many answsers while doing my own research in the past year or so. I found that the more I know the better I am equipped to make suggestions to the doctors who are treating me. I will say many doctors are reluctant to listen or take your suggestions because they don't like the fact that we know more than they. I am thankful that my rheumatologist and primary care physican encourage me to do as much research as possible. When I have questions both give me their full attention and if they don't know the answer they will do their research to get me the answer. I am truly blessed to have Dr. Nunez and Dr. Kulkarni. These two doctors are always making decisions about my care with my best interest at heart.
So here are the website that I have gotten a lot of information from.
1. www.hughes-syndrome.org/
2. www.apsfa.org/
3.miscarriage.about.com/od/.../p/antiphosphol.htm
4. http://www.antiphospholipid.net/
5. http://www.netdoctor.co.uk/diseases/facts/antiphospholipid.htm
6. http://www.hss.edu/Conditions/Antiphospholipid-Syndrome
7. http://www.rarediseasesnetwork.org
8. http://www.apsfa.org/links.htm
I will have more for you to research soon. I am trying to compile as much information as possible. In the mean time Please visit http://www.facebook.com/home.php#!/APSFA . You can also look online and find many support groups, check facebook as there are many groups you can find and meet people with APS.
Wednesday, June 29, 2011
Thursday, June 23, 2011
Sick and Tired of being Sick and Tired
Today was one of those days where I was trying so hard to fight off a pitty party but my emotions were uncontrollable at times throughout the day. I can't work which makes me feel worthless. I want to contribute, I want to be able to feel like I am accomplishing something each day. I can't even go to school because the symptoms got so bad over the last 2 terms that I couldn't finish the terms so I lost financial aid. I can't crochet or create the scrapbooks I want to make for the kids because I am shaking so bad lately. I feel like the only thing I can do is sit here and hope that at the next appointment the doctors will open their eyes see that I am truly in pain, suffering with this fatigue, and its not all in my head.
I try so hard not bitch, complain, groan, moan, cry, or feel sorry for myself. But putting on this brave face all the time just gets to be too much sometimes. I listen to doctors tell me well if you lose 50 or 60 pounds your headache will go away, then another doctor tell me this headache is a direct complication of the disease I have. Yet, another doctor will tell me she knows I have the disease but the medical records she has do not give solid proof that I have Antiphospholipid Syndrome. I hardly have any quality of life right now. Yet, because I have not had a DVT, stroke, heart attack, low-platelet count I am considered lucky because I only need what they call minimal treatment.
Well then I want to know why can't I concentrate, why don't have energy, why can't I move without pain in my joints and bones? Why can't I hold my children, play outside with them, why can't I hold a job? My symptoms may not be as severe as others and yes I am thankful that I have not had to deal with clots or anything life threatening, but man this is crazy.
My life revolves around how I feel for the day. Its not like I can wake up, get dressed, and take care of all the daily activities that need ot be taken care of. Its not like I can say ok kids today we are going to make breakfast together, then we will do a craft, and then we will go swimming or go to the park, and hows about BBQ tonight and a picnic on the living room floor. I am lucky if I can do one of those with the kids.
I always wanted so much more for my life. I watched my mom go through all this by herself and I am sure if someone knew what was really wrong and didn't just pass her off to meds she would have lived a much happier life and did so many of the things I know she wanted to accomplish in her life.
I don't want to lock myself away in a room because I am so tired of people saying you need to make changes in your life. You need to do this, you need to that, you need to change this about yourself and life will be much better. I am so sick of hearing its mind or matter or you just need a hobby.
I am so sick of doctors talking to me like I am dumbass who hasn't done my research, who doesn't live in this body on a daily basis, or some hypochondriac seeking attention or drugs.
I want to finish my degree, I want to do something in this life to make my family and friends proud of me. I want to fulfill the purpose God put me on this earth to fulfill. I want to make a difference, I want to travel, I want to see places, things, and meet people. I want to my life to mean something. I don't want to waste away or just merely BE.
But how do I do that when I can't seem to get the help that I need. Part of me wants to give up on going to NYC to see this doctor. Part wants to delete the group page and stop trying raise awareness. There are so many disease, causes, and situations that really need attention why would I expect people to raise awareness if the doctors won't even listen when the patients talk.
Life right now just seems to be at a stand still. I feel bad praying, asking for a healing, asking for all this to stop, or to provide a way to find a cure, raise awarness. I think who I am to ask. I hate asking people to help me financially, emotionally, and physically. I never asked for help. I always made a way to get things done. I was a survivor. I didn't take crap from anyone. I wanted something I went and got it. I busted my butt for everything and never once asked for a hand out. I hate asking now. I want to work, pay my own bills, save my own money, go out and enjoy family time either on things that don't cost or if we feel like it go do something that does cost money.
I want to be able to go into a store and not look like a hoodrat. I want to get dressed everyone morning and if for some reason I don't feel like getting dressed then I don't have to. I want to exercise everyday, each healthy, and stop smoking. I can't exercise because I can't freakin move. I can't eat healthy when finances are so tight and I am making sure the kids are eating before I eat. I smoke more in situations like this because I am so stressed and nervous. I listen to the doctors say lose weight, lose weight, ok you tell me how I am suppose to lose weight when I am on high doses of steriods 3 to 4 times a year. Not to mention when I am chemo and takng the steriods I don't eat because my stomach is so upset. I want to just let all this out to the doctors but I can just hear what they would think or even have the nerve to say outloud...."I think you need to look into getting on or changing antidepressants." Which makes me even more pissed off. So there it is, my frustration! I will sit here and suffer in silence and we can wait until unmistakable complications arise and then see what they do if they are able to catch it quick enough to save me.
I try so hard not bitch, complain, groan, moan, cry, or feel sorry for myself. But putting on this brave face all the time just gets to be too much sometimes. I listen to doctors tell me well if you lose 50 or 60 pounds your headache will go away, then another doctor tell me this headache is a direct complication of the disease I have. Yet, another doctor will tell me she knows I have the disease but the medical records she has do not give solid proof that I have Antiphospholipid Syndrome. I hardly have any quality of life right now. Yet, because I have not had a DVT, stroke, heart attack, low-platelet count I am considered lucky because I only need what they call minimal treatment.
Well then I want to know why can't I concentrate, why don't have energy, why can't I move without pain in my joints and bones? Why can't I hold my children, play outside with them, why can't I hold a job? My symptoms may not be as severe as others and yes I am thankful that I have not had to deal with clots or anything life threatening, but man this is crazy.
My life revolves around how I feel for the day. Its not like I can wake up, get dressed, and take care of all the daily activities that need ot be taken care of. Its not like I can say ok kids today we are going to make breakfast together, then we will do a craft, and then we will go swimming or go to the park, and hows about BBQ tonight and a picnic on the living room floor. I am lucky if I can do one of those with the kids.
I always wanted so much more for my life. I watched my mom go through all this by herself and I am sure if someone knew what was really wrong and didn't just pass her off to meds she would have lived a much happier life and did so many of the things I know she wanted to accomplish in her life.
I don't want to lock myself away in a room because I am so tired of people saying you need to make changes in your life. You need to do this, you need to that, you need to change this about yourself and life will be much better. I am so sick of hearing its mind or matter or you just need a hobby.
I am so sick of doctors talking to me like I am dumbass who hasn't done my research, who doesn't live in this body on a daily basis, or some hypochondriac seeking attention or drugs.
I want to finish my degree, I want to do something in this life to make my family and friends proud of me. I want to fulfill the purpose God put me on this earth to fulfill. I want to make a difference, I want to travel, I want to see places, things, and meet people. I want to my life to mean something. I don't want to waste away or just merely BE.
But how do I do that when I can't seem to get the help that I need. Part of me wants to give up on going to NYC to see this doctor. Part wants to delete the group page and stop trying raise awareness. There are so many disease, causes, and situations that really need attention why would I expect people to raise awareness if the doctors won't even listen when the patients talk.
Life right now just seems to be at a stand still. I feel bad praying, asking for a healing, asking for all this to stop, or to provide a way to find a cure, raise awarness. I think who I am to ask. I hate asking people to help me financially, emotionally, and physically. I never asked for help. I always made a way to get things done. I was a survivor. I didn't take crap from anyone. I wanted something I went and got it. I busted my butt for everything and never once asked for a hand out. I hate asking now. I want to work, pay my own bills, save my own money, go out and enjoy family time either on things that don't cost or if we feel like it go do something that does cost money.
I want to be able to go into a store and not look like a hoodrat. I want to get dressed everyone morning and if for some reason I don't feel like getting dressed then I don't have to. I want to exercise everyday, each healthy, and stop smoking. I can't exercise because I can't freakin move. I can't eat healthy when finances are so tight and I am making sure the kids are eating before I eat. I smoke more in situations like this because I am so stressed and nervous. I listen to the doctors say lose weight, lose weight, ok you tell me how I am suppose to lose weight when I am on high doses of steriods 3 to 4 times a year. Not to mention when I am chemo and takng the steriods I don't eat because my stomach is so upset. I want to just let all this out to the doctors but I can just hear what they would think or even have the nerve to say outloud...."I think you need to look into getting on or changing antidepressants." Which makes me even more pissed off. So there it is, my frustration! I will sit here and suffer in silence and we can wait until unmistakable complications arise and then see what they do if they are able to catch it quick enough to save me.
Tuesday, June 21, 2011
There is no quality of life right now
I sit here in the morning with pain throughout my body in my muscles, joints, bones. My head, eyes, ears, upper back, and neck hurting so bad that I just want to go to sleep to forget about it. But then this overwhelming guilt comes over because I have four children who don't understand what is going on and I know they will begin to resent the fact that I can't do anything with them. I want to sit and play boardgames with them but their excitement gets so loud it makes my head hurt worse. I want to go outside and play with them but I can't move fast enough for them and wind up so exhausted that I am spent for at least 2 days. I want to be with them make memories with them.
I want to work to contribute to my family. I want to make my family has a place to live, a phone for doctors to get a hold of me, food to keep up healthy, electricity to keep us cool and allow us to cook. I feel like everytime I get caught up or by some slim chance get a little ahead we are slapped, kicked, punched, and robbed leaving us with nothing having to ask for help.
I am so tired of asking for help. I am tired of having to give up positions I love because my body is attacking itself. I hate being around people because then everyone knows I am not working, not taking care of what needs to be done, I can't say we would love to go when we are invited because of lack of money, lack of energy, or lack of being able to make it through whatever we were invited to do.
I can't clean the house, I have to ask my husband, my niece, my kids, my friends, and my family to do so much for me. I see my Rheumy who also has APS and she seems to have everything together. She has the will to make it through. I want to make a difference like she does, I want to be a positive outlook for those that are suffering like me. But most of all I want to be the wife, mother, aunt, daughter, sister, friend, and prayer warrior I used to be. So how do I make these doctors understand? I wish I could record what a day in my life is like. I wish I could switch bodies with one of the these doctors that think they know so much and let them experience my life first hand.
I want to work to contribute to my family. I want to make my family has a place to live, a phone for doctors to get a hold of me, food to keep up healthy, electricity to keep us cool and allow us to cook. I feel like everytime I get caught up or by some slim chance get a little ahead we are slapped, kicked, punched, and robbed leaving us with nothing having to ask for help.
I am so tired of asking for help. I am tired of having to give up positions I love because my body is attacking itself. I hate being around people because then everyone knows I am not working, not taking care of what needs to be done, I can't say we would love to go when we are invited because of lack of money, lack of energy, or lack of being able to make it through whatever we were invited to do.
I can't clean the house, I have to ask my husband, my niece, my kids, my friends, and my family to do so much for me. I see my Rheumy who also has APS and she seems to have everything together. She has the will to make it through. I want to make a difference like she does, I want to be a positive outlook for those that are suffering like me. But most of all I want to be the wife, mother, aunt, daughter, sister, friend, and prayer warrior I used to be. So how do I make these doctors understand? I wish I could record what a day in my life is like. I wish I could switch bodies with one of the these doctors that think they know so much and let them experience my life first hand.
Monday, June 20, 2011
I am really start to hate doctors
Did you ever get the feeling that doctors would rather make you feel helpless and stupid then learn something new. I have been to the ER 5 times for the same reason........This is how it goes....Tell the nurse who thinks she knows everything what your symptoms are....She will then decide the severity of your condition.....Well if the nurse has absolutely NO IDEA what Antiphospholipid Syndrome is she willl put you are the lowest severity level....So you wait 9 to 15 hours to be seen in a freakin waiting room with a bunch of sick people that could be seen in an urgent care or a doctors office. Then when the pain and symptoms get to be too much and of course after shift change you go to the nurse on duty. You tell this the nurse praying they know something about Antiphospholipid Syndrome. In my case thank God some of the nurses remember me so they do know because I educated them myself. Even brought literature for them to read. Well this nurse will upgrade you so you can be seen faster. Doctors come in do all the checks, the vitals, look at everything, ask you all the questions. Then neurology comes in......This is where it gets interesting......Neurology will tell you this is rare and mostly happens in women that are overweight. But then always ignore the fact that I have research in hand that shows them Psuedotumor Celebri in a direct complication of Primary Antiphospholipid Syndrome. So they adjust medications yet again, do a spinal tab if they are in the mood for it, MRI, or CAT scan just to tell you that you don't MS, a clot in your brain, or whatever else they think up while they are sitting trying to come up with because they are ill prepared and uneducated about the disease.
I want to scream, I want to cry, I want to slap some doctors right back into Medical school. Or just slap a few times with all the research I have in hand. The difference between me and a doctor is I am more of an expert than the doctor is because I live in this body. I deal with the disease on a daily basis. I sit here and read article and website day after day. I feel like I am stuck in a prison cell just me. I can't explain to anyone what is happening because I feel like no one will listen.
I want to scream, I want to cry, I want to slap some doctors right back into Medical school. Or just slap a few times with all the research I have in hand. The difference between me and a doctor is I am more of an expert than the doctor is because I live in this body. I deal with the disease on a daily basis. I sit here and read article and website day after day. I feel like I am stuck in a prison cell just me. I can't explain to anyone what is happening because I feel like no one will listen.
Wednesday, June 15, 2011
Another episode Another day waiting in the ER
Well the headache came back about 4 days ago. I am now seeing trails out of my peripheal vision, flashing black and white spots, and really blurred vision. I am having trouble coming up with words again and keep stuttering. My right leg keep wiggin out by shaking and it is taking me a mintue to lift my leg to make it stop. My left arm is swelling from the elbow down. It hurts so bad that I wish I could just make it stop some how.
What really sucks is sitting in the waiting and hearing people complain that they have been 24, 36, or 48 hours waiting to be seen. Most of these people would have gotten much faster, friendlier care is there was an urgent care here. My problem is these nurses and doctors think, "Oh this patient only has a headache." Which winds up placing me very low on the list to be seen. This is not even mentioning that fact this hospital is a trauma center as well. So everytime a trauma comes in I get moved further down the list.
I have been doing research on my own to see what could possibly be causing all these symptoms and flare ups to happen in the short amount of time. Well my research paid off hopefully. After reading a few articles and forums I figured out that between March and April I was on 3 or 4 rounds of antibiotics for a kidney infection, a cyst that needed to lanced, and for what the doctors thought was a sinus infection. Well aparently when you have Antiphospholipid Syndrome and you take Amoxicillin it makes your body produce even more antiboides. So with even more antibodies in your system what is going to happen? Well lets you will most likely suffer through severe flare up where your normal symptoms of fatigue, joint, muscle, and bone pain, the rash on the skin and the face, the lack of healing, and the increase of clotting or bleeding. So I have suffered all of these in which I would consider to be the worst I've experienced. Add to all that the Pseudotumor Celebri (excess spinal fluid on the brain).
I love the way the neurologist has his mind made up that my headaches and pseudotumor celebri are caused by the fact that i am 65 over weight. He will not accept the fact that this is a known complication of Antiphospholipid Syndrome. I really just wish sometime that I could shake doctors until they understand what I am talking about. And I am already shady about these doctors and it grows stronger everytime I have to deal with an ignorant doctor who refuses to listen.
It is really gettting to me that the nurses don't much if not anything at all about the disease so they can't prioritize me in the correct manner. So I sit here on my laptop writing my blog with my ER bag next to me full of things to keep my busy while I wait. It is so sad that health care has to be this way. I think what makes this even more frustrating is the other hospital I would normally go to doesn't have a neurologist on staff for the ER department. And the other hospital that I would go to only if I was unconscious and couldn't protest because instead of treating of the patient they make assumptions and label you without listening. They are ignorant and pigheaded with no sense of compassion, bed side manner, willingness to have you explain what is going on in your own body.
I had to have my mom call the doctor and charge nurse to find out what is going on. The charge nurse in the ER told my mother that Pseudotumor Celebri (spinal fluid build up on the brain) is a serious problem and that he will get my chart and see what he can do to help get me seen faster. Well Lets see if that helps. It is really sad that a person has to be so aggressive with nurses and doctors to receive the care they need.
I was watching a show the other night about how much prescription drug abuse is on the rise. Well yea its on the rise. Everytime someone goes to an ER the first thing the doctor does is have an IV started on the patient so they can admister the narcotics and then the doctors will discharge a person with a prescription for more. Doctors have gone from being the person you go to for help with medical issues to either being your drug dealer or someone that doesn't listen, doesn't have bed side manner, and isn't updated on the latest research or new diseases that are being discovered so they become your very own Labeler! They can slap a label on your chart in the snap of a finger leaving you to deal with the reprocussion of the situation which then turns into an even bigger obstecle for you cross to be treated properly for your illness.
As you can see I am so very frustrated with our health care system.
What really sucks is sitting in the waiting and hearing people complain that they have been 24, 36, or 48 hours waiting to be seen. Most of these people would have gotten much faster, friendlier care is there was an urgent care here. My problem is these nurses and doctors think, "Oh this patient only has a headache." Which winds up placing me very low on the list to be seen. This is not even mentioning that fact this hospital is a trauma center as well. So everytime a trauma comes in I get moved further down the list.
I have been doing research on my own to see what could possibly be causing all these symptoms and flare ups to happen in the short amount of time. Well my research paid off hopefully. After reading a few articles and forums I figured out that between March and April I was on 3 or 4 rounds of antibiotics for a kidney infection, a cyst that needed to lanced, and for what the doctors thought was a sinus infection. Well aparently when you have Antiphospholipid Syndrome and you take Amoxicillin it makes your body produce even more antiboides. So with even more antibodies in your system what is going to happen? Well lets you will most likely suffer through severe flare up where your normal symptoms of fatigue, joint, muscle, and bone pain, the rash on the skin and the face, the lack of healing, and the increase of clotting or bleeding. So I have suffered all of these in which I would consider to be the worst I've experienced. Add to all that the Pseudotumor Celebri (excess spinal fluid on the brain).
I love the way the neurologist has his mind made up that my headaches and pseudotumor celebri are caused by the fact that i am 65 over weight. He will not accept the fact that this is a known complication of Antiphospholipid Syndrome. I really just wish sometime that I could shake doctors until they understand what I am talking about. And I am already shady about these doctors and it grows stronger everytime I have to deal with an ignorant doctor who refuses to listen.
It is really gettting to me that the nurses don't much if not anything at all about the disease so they can't prioritize me in the correct manner. So I sit here on my laptop writing my blog with my ER bag next to me full of things to keep my busy while I wait. It is so sad that health care has to be this way. I think what makes this even more frustrating is the other hospital I would normally go to doesn't have a neurologist on staff for the ER department. And the other hospital that I would go to only if I was unconscious and couldn't protest because instead of treating of the patient they make assumptions and label you without listening. They are ignorant and pigheaded with no sense of compassion, bed side manner, willingness to have you explain what is going on in your own body.
I had to have my mom call the doctor and charge nurse to find out what is going on. The charge nurse in the ER told my mother that Pseudotumor Celebri (spinal fluid build up on the brain) is a serious problem and that he will get my chart and see what he can do to help get me seen faster. Well Lets see if that helps. It is really sad that a person has to be so aggressive with nurses and doctors to receive the care they need.
I was watching a show the other night about how much prescription drug abuse is on the rise. Well yea its on the rise. Everytime someone goes to an ER the first thing the doctor does is have an IV started on the patient so they can admister the narcotics and then the doctors will discharge a person with a prescription for more. Doctors have gone from being the person you go to for help with medical issues to either being your drug dealer or someone that doesn't listen, doesn't have bed side manner, and isn't updated on the latest research or new diseases that are being discovered so they become your very own Labeler! They can slap a label on your chart in the snap of a finger leaving you to deal with the reprocussion of the situation which then turns into an even bigger obstecle for you cross to be treated properly for your illness.
As you can see I am so very frustrated with our health care system.
Tuesday, June 7, 2011
How blessed I truly am
Well shirts haven't been selling and I was beginning to think I wouldn't be able to get to New York to see Dr. Lockshin. Something kept telling me to just call around and see if I could find someone to donate shirts and printing so when we do sell shirts we would get most of the money. So I made three calls yesterday. The first company I talked the gentleman I talked to asked me to put together information about the disease, my personal story, and proposal of what exactly we were asking them to donate. The second call the woman was a sweetheart, very understanding and compassionate. She offered a great price for t-shirts and printing but couldn't afford to donate anything because of the economy. I completely understood what she was talking about. I can only imagine how it has affected her business. The call three, I asked to speak Sandy the owner and her pleasant voice came on the line. I explained to Sandy what was going on and told her what we are all trying to accomplish in such a short time. Well Sandy was so excited to help. She decided to donate over 300 t-shirts and all the printing. Then Sandy goes on to tell me that she hosts a christian radio show and she was having trouble finding someone to be a guest next Thursday. She then went on to invite me to be her guest for the time slot because she wants to help raise awareness and help me get the treatment I need. God is so good. T-shirts weren't selling because God had something better in the works. So not only will we have the t-shirts to sell, I will be able to raise awareness as well as have many more people praying not just for me, but for others that are suffering with no answers, no treatment, and no doctors. The Lord is allowing me the honor to spread the word and not just the word about the disease but most of all the Word of God. I know I would have crumbled already if the Lord wasn't my strength and refuge. I know only because of the Lord I am more than a conqueror. I also know that only through the Lord ALL things are possible. I know that I will be continue to be amazed at how the Lord works through all of this.
I am starting now to praise the Lord for who He is, what He can do, and how He can do it. I praise the Lord because I know this is my purpose in life and this purpose is a legacy I can leave my family and friends. I am truly too blessed to be stressed.
So if you would like to sport the shirt please chose from one of the options below.
First, I would like to say, I really truly from the bottom of my heart appreciate everyone’s encouragement, love, support, prayers, and thoughts. I know how tight money in this economy. I completely understand if you cannot purchase a shirt. . One thing I do ask is if you can help Raise awareness!!! Nothing in this world gets attention unless people come together and get the word out, fight for the right diagnosis, the right treatment, funding for research, and most all a cure.
Below you will find a few different options if you can buy a T-shirt.
• If you prefer to purchase via the internet: You can log on the www.livingtheminivandream.org where you can order and purchase your t-shirt directly from there.
• If you prefer to purchase by check or money order you can
Send an email via the Contact Us Tab; tell us what size, color, and how many you would like to purchase. Please make check or money order payable to Living The Minivan Dream, This will go to our Fundraising Headquarters Send your check or money order
Fundraiser for Jennifer
1034 Red Oaks Loop NE
Albuquerque, NM 87122
• You can also email me through FACEBOOK at jennsfundraiser@groups.facebook.com providing me with your order information and then sending your check or money order to one of the two addresses provided above.
Jennifer Gallegos
11704 Coronado Ave N.E.
Albuquerque, NM 87122
• If you live in Albuquerque contact me, Bernadette Providenti, or Jimmie Providenti so we can meet up somewhere or you can stop over, place your order, and pay for the shirt. Once the shirts are delivered I will have someone in the family deliver the shirt to you.
So thank you again from the bottom of my heart.
You can also find us on twitter: twitter.com/jennprov22, Facebook, blogger.com.
I am starting now to praise the Lord for who He is, what He can do, and how He can do it. I praise the Lord because I know this is my purpose in life and this purpose is a legacy I can leave my family and friends. I am truly too blessed to be stressed.
So if you would like to sport the shirt please chose from one of the options below.
First, I would like to say, I really truly from the bottom of my heart appreciate everyone’s encouragement, love, support, prayers, and thoughts. I know how tight money in this economy. I completely understand if you cannot purchase a shirt. . One thing I do ask is if you can help Raise awareness!!! Nothing in this world gets attention unless people come together and get the word out, fight for the right diagnosis, the right treatment, funding for research, and most all a cure.
Below you will find a few different options if you can buy a T-shirt.
• If you prefer to purchase via the internet: You can log on the www.livingtheminivandream.org where you can order and purchase your t-shirt directly from there.
• If you prefer to purchase by check or money order you can
Send an email via the Contact Us Tab; tell us what size, color, and how many you would like to purchase. Please make check or money order payable to Living The Minivan Dream, This will go to our Fundraising Headquarters Send your check or money order
Fundraiser for Jennifer
1034 Red Oaks Loop NE
Albuquerque, NM 87122
• You can also email me through FACEBOOK at jennsfundraiser@groups.facebook.com providing me with your order information and then sending your check or money order to one of the two addresses provided above.
Jennifer Gallegos
11704 Coronado Ave N.E.
Albuquerque, NM 87122
• If you live in Albuquerque contact me, Bernadette Providenti, or Jimmie Providenti so we can meet up somewhere or you can stop over, place your order, and pay for the shirt. Once the shirts are delivered I will have someone in the family deliver the shirt to you.
So thank you again from the bottom of my heart.
You can also find us on twitter: twitter.com/jennprov22, Facebook, blogger.com.
Monday, May 30, 2011
Mixed Feelings All At Once
Well the week started off ok. I woke up with very little pain and little more energy then usual. As each progressed the pain began to set in and the fatigue got worse. I tried my best to be there for the boys while they were celebrating the end of the school. I know Albuquerque like the back of my hand and can give someone directions from anywhere, yet thursday I was so lost I had to pull over and cry because I had no idea where I was or what direction I was suppose to go in. I am always the one that can stop regroup quickly and get things going. So I said a prayer, took a deep breathe and made it through. I figured out that if I keep myself busy I don't think of the pain too much, I don't dwell on the fatigue as much. If I keep moving I can make it most of the time.
It made my week when I was able to watch Gabe get his award and graduate from the DARE program. And it was great sitting with friends watching the baseball team swim and get their trophies. The little ones were just really enjoying themselves and it meant so much to watch them.
I really went through a down time this week though. I went through a few days of crying uncontrolably, anger, and a lot of fear. I am so scared we won't raise the money to go see the specialist in NYC. I want answers, I want to raise awareness. I see all over the internet people that are suffering the way I am. Their doctors can't seem to find the right medications to get the disease uncontrol. I don't want to be a stastic, someone who loses the battle, falls through the cracks.
I have hopes to see my kids make their dreams come true. I want to play with them, share my life with them, I want to watch them do things in their lives that they have their hearts set on. I want to hold them when they are sick, crying, having a hard day. I want to comfort and encourage them when life doesn't seem to go their way. I want to be there to talk to them when they need me. I want to be a shoulder they can cry, arms they can wrap themselves in when they need a hug. I want to run with them, exercise with them, go on a hike, a bike ride, or even play the WII. I want to be there. I want to be there as me the real me, the fun loving, caring, funny, fighter who doesn't let anything take her down for long. I want to jump on a tramploine with my kids, wrestle with my kids, play mud kickball, go swimming, ride on rides at an amusement park. The kids want to start saving money so we can take a vacation ever year to go to a different waterpark each year. These are things I would love to do.
I have so much in my life that I want to accomplish. I have dreams that I want to make come true. I want to finish my degree, start a career, and use my degree, career and the life I have been through to help others beat this disease and make their dreams come true. I want to bring to what seems like a hopeless situation and disease.
I want to jump on a motorcycle and take a ride with my girls. I want to jump into a Mustang and take a long ride to clear my head. I want to see places in this world. I want to experience things. I want to touch people's lives. I want to make a legacy.
I don't want my life to center to around pain, fatigue, the next flare up, or complication. I hate taking 18 to 25 pills a day. I know it sounds like im whining and saying I want, I want, I want. But seriously when take for granted what you have and now its gone you want it back. I know I can get my life. There hasn't been a death sentence passed down on me. But the suffering and torment is just as bad. you seem to exist. You don't live, you dream, you don't get to just go try things. Life just is. I want more.
It made my week when I was able to watch Gabe get his award and graduate from the DARE program. And it was great sitting with friends watching the baseball team swim and get their trophies. The little ones were just really enjoying themselves and it meant so much to watch them.
I really went through a down time this week though. I went through a few days of crying uncontrolably, anger, and a lot of fear. I am so scared we won't raise the money to go see the specialist in NYC. I want answers, I want to raise awareness. I see all over the internet people that are suffering the way I am. Their doctors can't seem to find the right medications to get the disease uncontrol. I don't want to be a stastic, someone who loses the battle, falls through the cracks.
I have hopes to see my kids make their dreams come true. I want to play with them, share my life with them, I want to watch them do things in their lives that they have their hearts set on. I want to hold them when they are sick, crying, having a hard day. I want to comfort and encourage them when life doesn't seem to go their way. I want to be there to talk to them when they need me. I want to be a shoulder they can cry, arms they can wrap themselves in when they need a hug. I want to run with them, exercise with them, go on a hike, a bike ride, or even play the WII. I want to be there. I want to be there as me the real me, the fun loving, caring, funny, fighter who doesn't let anything take her down for long. I want to jump on a tramploine with my kids, wrestle with my kids, play mud kickball, go swimming, ride on rides at an amusement park. The kids want to start saving money so we can take a vacation ever year to go to a different waterpark each year. These are things I would love to do.
I have so much in my life that I want to accomplish. I have dreams that I want to make come true. I want to finish my degree, start a career, and use my degree, career and the life I have been through to help others beat this disease and make their dreams come true. I want to bring to what seems like a hopeless situation and disease.
I want to jump on a motorcycle and take a ride with my girls. I want to jump into a Mustang and take a long ride to clear my head. I want to see places in this world. I want to experience things. I want to touch people's lives. I want to make a legacy.
I don't want my life to center to around pain, fatigue, the next flare up, or complication. I hate taking 18 to 25 pills a day. I know it sounds like im whining and saying I want, I want, I want. But seriously when take for granted what you have and now its gone you want it back. I know I can get my life. There hasn't been a death sentence passed down on me. But the suffering and torment is just as bad. you seem to exist. You don't live, you dream, you don't get to just go try things. Life just is. I want more.
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