Thursday, December 23, 2010
My new port...
Monday, November 22, 2010
Coming out of the dark
It has been awhile since I have posted as many of you have probably noticed. You know we all have our storms and difficult seasons and this one has been especially hard on me. After returning from Mayo, I felt empowered! Only to return to the monotony that has been my life for the past months. I have struggled with my purpose. Each day I sit and watch others live out their lives only to have mine stand still. I am confined to this house and my dependency on others has been overwhelmingly depressing.
I know that I have a purpose, my father in heaven has given it to me in black in white. However, sometimes (just being completely transparent) I feel as though I don't. I am not the wife, mother or person I want to be. I know, I know every one's situation is different and you shouldn't compare yourself to anyone else. Everything happens for a reason. I do believe this. I do believe that God has a purpose for each and every one of us. But I think that anyone would be lying if they said that they have never doubted it.
Lately, I have felt alone and consumed by darkness. I feel as if no one knows what I am going through and I try to explain it and all I get is "you know that's not true." It's true to me. Dysautonomia is the devil in sheep's clothing. It has stolen so much of my life, happiness and identity. I know that this is probably not a very positive read but I think it is therapeutic for me to get it out.
These last few weeks I have fought with doctors to get the care I deserve when they don't want to listen. My body has been attacked by sickness that has worsened my Dysautonomia and I have had my life dangled before me then taken away again. A little over a week ago, I thought I was on the road to a better life. I was able to take care of my son one entire day while my husband was at work and I was able for the first time in MONTHS to get out with my girlfriend and go to lunch and a movie without my wheelchair! It was liberating! I saw freedom and I was energized. I began doing the exercises that the doctor wanted me to do, I was pushing myself to build strength only to have it quickly taken away again. Since then, I've been back where I started. I haven't left the house and I reluctantly sat in that chair I loath to be wheeled from the car last night.
I know that I serve an awesome God. I know that with him all things are possible but the truth is lately I feel more like a burden than a person. I take so much more from my family than I give and although they reassure me I am not...it doesn't make the feeling go away. People are quick to say give it to God, cast those thoughts from your mind you know they are not true...but they don't live the life I do. It is a lot easier said than done. I try! I read my Bible, I talk to God but the mind can be an evil thing. If I don't think it I dream it and when I try to talk to people they just want to fix me. I can't even explain it to my best friend, my soul mate...my husband there aren't words. I feel like a broken record telling him how I feel over and over and the darkness just takes over me.
It's silly you see, today I had a moment of purpose. The first one I've had in awhile. I know that Collin is my son and that no one can ever take that away from me but I am not the mom that I think he deserves. I want to give him more than I can. He's been sick too. I've always been the one to take care of him when he is sick and I haven't been able to the way I normally would. But today, I had a feeling something told me even though he was on antibiotics that he needed to go to the doctor. He hasn't been eating and he's just not himself. I was too sick to make the car ride to the doctor so my husband took him alone. It broke my heart to not go but I tried not to show it. After the appointment, my husband called me and said "You're the Mama." Turns out his ear infection was raging in his left ear so much so that, his tubes we had put in, where blocked. He had to be put on a stronger antibiotic and needed antibiotic ear drops as well. For a moment, I felt proud of my self that no one else picked up on it but I knew there was something wrong with my baby.
My husband often catches me pulling away from him and Collin and gets upset with me. He encourages me to give my all whenever I can and I understand that. But what he and everyone else for that matter doesn't understand is that when I am unable to do things or participate in family things it is easier for me to become numb to the situation and close down. Otherwise, I will break down and I don't want people to know how weak I am. To many of you this may make no sense at all. But to me...this is my life.
I know that I have a purpose, my father in heaven has given it to me in black in white. However, sometimes (just being completely transparent) I feel as though I don't. I am not the wife, mother or person I want to be. I know, I know every one's situation is different and you shouldn't compare yourself to anyone else. Everything happens for a reason. I do believe this. I do believe that God has a purpose for each and every one of us. But I think that anyone would be lying if they said that they have never doubted it.
Lately, I have felt alone and consumed by darkness. I feel as if no one knows what I am going through and I try to explain it and all I get is "you know that's not true." It's true to me. Dysautonomia is the devil in sheep's clothing. It has stolen so much of my life, happiness and identity. I know that this is probably not a very positive read but I think it is therapeutic for me to get it out.
These last few weeks I have fought with doctors to get the care I deserve when they don't want to listen. My body has been attacked by sickness that has worsened my Dysautonomia and I have had my life dangled before me then taken away again. A little over a week ago, I thought I was on the road to a better life. I was able to take care of my son one entire day while my husband was at work and I was able for the first time in MONTHS to get out with my girlfriend and go to lunch and a movie without my wheelchair! It was liberating! I saw freedom and I was energized. I began doing the exercises that the doctor wanted me to do, I was pushing myself to build strength only to have it quickly taken away again. Since then, I've been back where I started. I haven't left the house and I reluctantly sat in that chair I loath to be wheeled from the car last night.
I know that I serve an awesome God. I know that with him all things are possible but the truth is lately I feel more like a burden than a person. I take so much more from my family than I give and although they reassure me I am not...it doesn't make the feeling go away. People are quick to say give it to God, cast those thoughts from your mind you know they are not true...but they don't live the life I do. It is a lot easier said than done. I try! I read my Bible, I talk to God but the mind can be an evil thing. If I don't think it I dream it and when I try to talk to people they just want to fix me. I can't even explain it to my best friend, my soul mate...my husband there aren't words. I feel like a broken record telling him how I feel over and over and the darkness just takes over me.
It's silly you see, today I had a moment of purpose. The first one I've had in awhile. I know that Collin is my son and that no one can ever take that away from me but I am not the mom that I think he deserves. I want to give him more than I can. He's been sick too. I've always been the one to take care of him when he is sick and I haven't been able to the way I normally would. But today, I had a feeling something told me even though he was on antibiotics that he needed to go to the doctor. He hasn't been eating and he's just not himself. I was too sick to make the car ride to the doctor so my husband took him alone. It broke my heart to not go but I tried not to show it. After the appointment, my husband called me and said "You're the Mama." Turns out his ear infection was raging in his left ear so much so that, his tubes we had put in, where blocked. He had to be put on a stronger antibiotic and needed antibiotic ear drops as well. For a moment, I felt proud of my self that no one else picked up on it but I knew there was something wrong with my baby.
My husband often catches me pulling away from him and Collin and gets upset with me. He encourages me to give my all whenever I can and I understand that. But what he and everyone else for that matter doesn't understand is that when I am unable to do things or participate in family things it is easier for me to become numb to the situation and close down. Otherwise, I will break down and I don't want people to know how weak I am. To many of you this may make no sense at all. But to me...this is my life.
Friday, November 12, 2010
Tuesday, November 2, 2010
New Hope for Blue Site!
Hey everybody! Check out the brand new Hope for Blue Dysautonomia Foundation site. http://www.hopeforblue.org/ or just click on the link in the bottom right hand corner of the screen. Look for support meetings and awareness events coming soon!
Sunday, October 31, 2010
Updates...
Whoo! We're back...still not fully recovered...but we're back safe and sound. The Mayo Clinic was a challenging experience. There were moments I thought things would never end, moments I wanted to give up and (just being honest) moments I wanted to give some doctors a piece of my mind.
The testing was exhausting! However, I now know that EVERY part of my body has been completely checked out. The week got off to a rocky start but in the end the trip wrapped up pretty well. My doctor finally even smiled on the last day!!! (Trust me this was a huge deal)
After everything, my final diagnosis was chronic fatigue, some lower intestinal issues (made worse by my condition) and Dysautonomia. My doctor would not label me with "POTS" because, as us Potsies know, we have good days and bad days and some of my symptoms did not present themselves during my autonomic testing. My doctor said based on all of my other medical records...POTS...but from her testing (which is all she would look at) Dysautonomia. She said the label wasn't important but then when I said well if you don't call it POTS then I have several symptoms that are unexplained she said "well then call it POTS."
The bottom line is we have a tentative plan for now on how to deal with it. She said that it could take me 6 to 12 months to recover from this episode but she thinks that we can work through it and be better prepared for not if but when I have these episodes again. She things that I am in a cycle and that I most likely will get better again (like after my pregnancy) not completely asymptomatic but to a point where I can function better but that it will happen again. After all, its a chronic illness. We think it was the heat that triggered it this time and so that may mean that we start looking at relocating if I get better in the winter and become sick again this coming Spring. Anyway you look at it, it is going to require even more lifestyle changes.
The doctor thinks that a lot of the medicines I was on were causing my system more harm than good. We found one instance where two of my meds were crossing and no one had noticed. The put me on three new meds and pretty much took me off everything else. She wants me to use my IV fluids as a crutch to get back on my feet so that I can start a physical rehabilitation regiment. We are going to give it a couple of weeks of getting my GI tract "reset" in an effort to get me out of pain, but starting some meds. Then increasing my fluids to give me strength and to alleviate some of the symptoms so that I can hopefully keep fluids and food down on my own. If that doesn't get me up, we're looking at putting a port in since with a picc line I can't pick up Collin (nothing over 15 pounds) for prolonged fluids since my body seems to be rejecting medicine and fluids have proven to be the most beneficial thing to my particular condition. Its baby steps...but hopefully I can get some quality of life back. I want out of my WHEELCHAIR!!! It was hard to hear the doctors talk about how deconditioned I was. They acted like I wanted to be. I would get so angry! What 27 year old wants to be in a wheelchair??? I would much rather be chasing my son and dancing for that matter!
The bottom line is we got some answers to questions that other doctors had been avoiding or ignoring all together. I am very thankful for the opportunity to have gone...and hope I never have to do it again! She gave me the name of a doctor she knows here in Dallas and we are going to look into him per her recommendation. He used to work at the Mayo. I am so thankful to everyone who has supported, prayed and just loved on me in this difficult season. I thank God for everyone of you!
The testing was exhausting! However, I now know that EVERY part of my body has been completely checked out. The week got off to a rocky start but in the end the trip wrapped up pretty well. My doctor finally even smiled on the last day!!! (Trust me this was a huge deal)
After everything, my final diagnosis was chronic fatigue, some lower intestinal issues (made worse by my condition) and Dysautonomia. My doctor would not label me with "POTS" because, as us Potsies know, we have good days and bad days and some of my symptoms did not present themselves during my autonomic testing. My doctor said based on all of my other medical records...POTS...but from her testing (which is all she would look at) Dysautonomia. She said the label wasn't important but then when I said well if you don't call it POTS then I have several symptoms that are unexplained she said "well then call it POTS."
The bottom line is we have a tentative plan for now on how to deal with it. She said that it could take me 6 to 12 months to recover from this episode but she thinks that we can work through it and be better prepared for not if but when I have these episodes again. She things that I am in a cycle and that I most likely will get better again (like after my pregnancy) not completely asymptomatic but to a point where I can function better but that it will happen again. After all, its a chronic illness. We think it was the heat that triggered it this time and so that may mean that we start looking at relocating if I get better in the winter and become sick again this coming Spring. Anyway you look at it, it is going to require even more lifestyle changes.
The doctor thinks that a lot of the medicines I was on were causing my system more harm than good. We found one instance where two of my meds were crossing and no one had noticed. The put me on three new meds and pretty much took me off everything else. She wants me to use my IV fluids as a crutch to get back on my feet so that I can start a physical rehabilitation regiment. We are going to give it a couple of weeks of getting my GI tract "reset" in an effort to get me out of pain, but starting some meds. Then increasing my fluids to give me strength and to alleviate some of the symptoms so that I can hopefully keep fluids and food down on my own. If that doesn't get me up, we're looking at putting a port in since with a picc line I can't pick up Collin (nothing over 15 pounds) for prolonged fluids since my body seems to be rejecting medicine and fluids have proven to be the most beneficial thing to my particular condition. Its baby steps...but hopefully I can get some quality of life back. I want out of my WHEELCHAIR!!! It was hard to hear the doctors talk about how deconditioned I was. They acted like I wanted to be. I would get so angry! What 27 year old wants to be in a wheelchair??? I would much rather be chasing my son and dancing for that matter!
The bottom line is we got some answers to questions that other doctors had been avoiding or ignoring all together. I am very thankful for the opportunity to have gone...and hope I never have to do it again! She gave me the name of a doctor she knows here in Dallas and we are going to look into him per her recommendation. He used to work at the Mayo. I am so thankful to everyone who has supported, prayed and just loved on me in this difficult season. I thank God for everyone of you!
Friday, October 22, 2010
Mayo week...or two?
The phrase TGIF has a whole new meaning to me now. I have never been more excited for a Friday in my life. I can't wait for a weekend of REST. This has been a challenging week physically, mentally, and spiritually. I have been put through more than I ever thought I could stand. I know that God is never going to give me more than I can handle but...I feel like my cup's getting pretty full.
Since Wednesday, I've met my main doctor who in spite of her brilliance has no bedside manor to speak of but that's ok. (As my cousin said, "we want her for her brain not for her tact.") It was hard hearing things so bluntly off the bat and being vulnerable. From the moment I got here, she expressed her extreme frustration with my doctors in Dallas. She thinks they have done more harm than good. I believe her exact words were something along the lines of "they've made a big mess and now I have to clean it up before I can even figure out what's going on." She off the bat threw out my diagnosis which sent me into tears...here I was thinking that I've had a label just no solution...no she said...I don't trust anything they say. So all of the sudden I was back at square one again. Sick with no label, no solution and no light at the end of the tunnel. It was a bit discouraging.
I started tests that afternoon and since then it has been non stop. I've been poked and prodded until I thought I just couldn't take it anymore. I've tried to be strong for so long and now it just seems like I'm starting over. Which I guess I am. I am in good hands here though. These people are amazingly organized and when I show up for a test they already know everything about me. It is awesome. Not to mention God is working through all of these people here. The nursing staff remember your name and say hi and smile and try and comfort you they are so kind. They've made the process more bearable.
I've had what feels like all of my blood stolen :) Needles, needles and more needles! I've been turned purple through a sweat test that I wouldn't wish on anyone. They cover you in gold powder slip you in a tent under heating lamps (any of you that know me, know how well I do in the heat) then increase your body temperature until you're running a fever 100.4 degrees and see how you sweat. If you sweat your powder turns purple and you are instantly turned into Barney. I was in and out of consciousness the whole time and by the time they pulled me out after an HOUR!!! I was unresponsive...so next thing I know I'm shaking and some little Asian doctor is poking at my eyes and lifting and dropping my arms. I now know it was the head of Neurology and that I sure know how to fill a room with people quick. I seem to be making a habit of it here. Four showers later...I'm still pale purple.
I've had an EEG that was painful and left sores on my head. Wore my monitors and got no sleep last night because my blood pressure cuff was going off every 20 minutes. Over the last 24 hours I've watched my heart rate fluctuate from 49 to 141...I don't think that's normal. These are just some highlights from the week. For my grand finale though, I might as well go all out right? I had a cardiovascular stress test today that nearly killed me. I gave it my all like they asked and they got what they asked for. My heart rate spiked to 165 which is really high for me then my blood pressure bottomed out to 80/42. I filled the room that time too. Needless to say I'm so tired its not even funny.
Looks like we'll be staying here a few days longer for some more test and consults that the doctor wants me to have so it looks like one week is quickly turning into two. Please pray for wisdom for my doctors and strength for me. I have the weekend off from testing...but Monday morning I have some sort of Gastric Empty test that involves me going to the hospital and apparently radioactive eggs are on the menu for breakfast. How did they know that of all the things in the world eggs are one of the things that repulse me the most! I don't know how I'm gonna get those down...I don't think hot sauce is allowed.
Thank you all for you love and support! For now, I'm going to rest. God bless!
Since Wednesday, I've met my main doctor who in spite of her brilliance has no bedside manor to speak of but that's ok. (As my cousin said, "we want her for her brain not for her tact.") It was hard hearing things so bluntly off the bat and being vulnerable. From the moment I got here, she expressed her extreme frustration with my doctors in Dallas. She thinks they have done more harm than good. I believe her exact words were something along the lines of "they've made a big mess and now I have to clean it up before I can even figure out what's going on." She off the bat threw out my diagnosis which sent me into tears...here I was thinking that I've had a label just no solution...no she said...I don't trust anything they say. So all of the sudden I was back at square one again. Sick with no label, no solution and no light at the end of the tunnel. It was a bit discouraging.
I started tests that afternoon and since then it has been non stop. I've been poked and prodded until I thought I just couldn't take it anymore. I've tried to be strong for so long and now it just seems like I'm starting over. Which I guess I am. I am in good hands here though. These people are amazingly organized and when I show up for a test they already know everything about me. It is awesome. Not to mention God is working through all of these people here. The nursing staff remember your name and say hi and smile and try and comfort you they are so kind. They've made the process more bearable.
I've had what feels like all of my blood stolen :) Needles, needles and more needles! I've been turned purple through a sweat test that I wouldn't wish on anyone. They cover you in gold powder slip you in a tent under heating lamps (any of you that know me, know how well I do in the heat) then increase your body temperature until you're running a fever 100.4 degrees and see how you sweat. If you sweat your powder turns purple and you are instantly turned into Barney. I was in and out of consciousness the whole time and by the time they pulled me out after an HOUR!!! I was unresponsive...so next thing I know I'm shaking and some little Asian doctor is poking at my eyes and lifting and dropping my arms. I now know it was the head of Neurology and that I sure know how to fill a room with people quick. I seem to be making a habit of it here. Four showers later...I'm still pale purple.
I've had an EEG that was painful and left sores on my head. Wore my monitors and got no sleep last night because my blood pressure cuff was going off every 20 minutes. Over the last 24 hours I've watched my heart rate fluctuate from 49 to 141...I don't think that's normal. These are just some highlights from the week. For my grand finale though, I might as well go all out right? I had a cardiovascular stress test today that nearly killed me. I gave it my all like they asked and they got what they asked for. My heart rate spiked to 165 which is really high for me then my blood pressure bottomed out to 80/42. I filled the room that time too. Needless to say I'm so tired its not even funny.
Looks like we'll be staying here a few days longer for some more test and consults that the doctor wants me to have so it looks like one week is quickly turning into two. Please pray for wisdom for my doctors and strength for me. I have the weekend off from testing...but Monday morning I have some sort of Gastric Empty test that involves me going to the hospital and apparently radioactive eggs are on the menu for breakfast. How did they know that of all the things in the world eggs are one of the things that repulse me the most! I don't know how I'm gonna get those down...I don't think hot sauce is allowed.
Thank you all for you love and support! For now, I'm going to rest. God bless!
Sunday, October 17, 2010
Humbled by God's grace...broken hearted by my thorn
Is it possible to be so humbled by God's grace and yet so broken hearted by this invisible thorn? God has continued to bless me ten times over with love, through friends, family, my church and people I don't even know. Everyday it seems that God finds a new way to bless me that I never thought of. I find myself each day in tears humbled by God's grace. I continue to feel broken and he continues to bless me. I try and stay strong for those around me but inside I'm falling apart and I feel as if no one understands that sometimes...but I know my Savior does. I talk to him at night when I can't sleep I pour out my heart and attempt to leave it at his feet. I recite the scriptures I read each day and pray for him to take it away. Although I am human, he treats me as if I am not. He loves me as if I am already with him. That's a hard thing for me. My God is a God that is full of grace.
When I was pregnant I prayed every night for my son to have a heart that would always seek God. For God to grab hold to his little life and tug. Now that he's here I already see that God's great compassion rests in his being. These last couple of months have been hard on Collin. He has seen me go in and out of the hospital and is very protective over me. He wakes up now in the middle of the night screaming my name and most of the time I cry because I can't get to him.
Church has been a challenge he now has a "buddy" he has a hard time when it is time to leave me. Today for the first time, he cried when we made it to the parking lot. The car wasn't even stopped. We went to check him in and I moved my arm to scratch my leg he quickly grabbed my arm and pulled it back to his waist. It breaks my heart to see my baby feel so much pain. He doesn't understand. On Friday when the home health nurse came to give me my infusion Collin ran after her yelling "no, no, no, no, no" he was banging on the bed and reaching for me grabbing my nurses pant legs he thought she was going to take me away. How does a 17 month old put that together. I fell horrible. I feel like I have put my baby through too much way to fast. A 17 month old shouldn't be worried about if their mom is going to leave them. They should be worried about playing or things of that sort. Please pray for my little one. I don't want him to grow up to fast.
Tomorrow I leave for Mayo. I pray I will get answers. I hope that someone will be able to help me get upright and live a life that's just a little bit better. I will keep my blog posted on my health updates but if I am not well enough check the Hope for Dysautonomia Group Page and it will be updated with health updates on me as well.
Keep the faith and keep raising awareness!!!
When I was pregnant I prayed every night for my son to have a heart that would always seek God. For God to grab hold to his little life and tug. Now that he's here I already see that God's great compassion rests in his being. These last couple of months have been hard on Collin. He has seen me go in and out of the hospital and is very protective over me. He wakes up now in the middle of the night screaming my name and most of the time I cry because I can't get to him.
Church has been a challenge he now has a "buddy" he has a hard time when it is time to leave me. Today for the first time, he cried when we made it to the parking lot. The car wasn't even stopped. We went to check him in and I moved my arm to scratch my leg he quickly grabbed my arm and pulled it back to his waist. It breaks my heart to see my baby feel so much pain. He doesn't understand. On Friday when the home health nurse came to give me my infusion Collin ran after her yelling "no, no, no, no, no" he was banging on the bed and reaching for me grabbing my nurses pant legs he thought she was going to take me away. How does a 17 month old put that together. I fell horrible. I feel like I have put my baby through too much way to fast. A 17 month old shouldn't be worried about if their mom is going to leave them. They should be worried about playing or things of that sort. Please pray for my little one. I don't want him to grow up to fast.
Tomorrow I leave for Mayo. I pray I will get answers. I hope that someone will be able to help me get upright and live a life that's just a little bit better. I will keep my blog posted on my health updates but if I am not well enough check the Hope for Dysautonomia Group Page and it will be updated with health updates on me as well.
Keep the faith and keep raising awareness!!!
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