The most frustrating part of this unrelenting illness is that you can't "see" it. To the naked eye yes I might look fine...what you don't know is that I'm seeing stars, my heart is pounding at 168 bpm, I have a migraine, I'm sinking my heels into the ground so that I don't fall over, I feel like I'm going to loose my lunch and if I could find the person who is making the room spin I'd give them a piece of my mind! If one more doctor looks at me and tells me it is all in my head I am going to SCREAM!!! (Brace yourself for a venting session)
The neurologist that originally diagnosed me with POTS, which was confirmed with a tilt table test, has now boarded the crazy train and is headed straight to Insaneville. I am so tired of having to defend myself. I am constantly having to be my own advocate. It is exhausting, frustrating and depressing. I just don't understand it. Why, why, why? Did God allow me to be inflicted with this terrible illness? That is not for me to know, I wish it was, but it is not. My only prayer is that I can find a doctor that knows what they are talking about and will LISTEN to me.
When this all began, the neurologist I am speaking of diagnosed me. It was a cardiologist that I was seeing when I was pregnant that confirmed it. The cardiologist preformed the tilt table test and had no previous understanding of POTS but agreed I had Dysautonomia. After I had my baby my symptoms went into remission the entire time I was nursing and then they came back.
When my symptoms came back I began seeing a new cardiologist who "specialized" in POTS. Who preformed an array of autonomic tests that all came back abnormal. This cardiologist went as far as to diagnose me with neuropathic POTS. He began treating me and nothing worked I got worse and worse until I got to the point where I couldn't walk. I was too weak and was fainting too much. I became wheelchair bound anytime I was outside my home. When the doctor had no where else to turn and could not explain my symptoms I went to Mayo.
After all of this, I get to Mayo and they throw out my diagnosis and tell me I have functional dysautonomia (I'm making it up) that I am simply deconditioned. When I went for my stress test my heart rate spiked followed by a plummet in blood pressure and a near passing out incident.
Now that I'm back and in the Texas weather, of course my symptoms are worsening yet again. My bladder is beginning to malfunction to the point of self cauterization amongst other things. After I returned, the cardiologist I was seeing that was the "specialist" jumped on board with the Mayo doctor and said he agreed. I don't have POTS and there is nothing else he could do for me. Since then I have had no one else to treat me. My Primary has been my saving grace prescribing me the fluids that are helping and trying to help me get my issues addressed. But she doesn't understand the illness enough to really help.
I went back to see my neurologist yesterday for the intense and frequent migraines that I have been enduring. Of course we had to catch up, the first thing he did was pull out his notes from Mayo and then proceeded to give me an hour dissertation on how crazy I am and that I am making this all up. He told me I should have never gone to Mayo (when he's the one that called and got me in.) I looked at him and said so you're telling me that a person can make their blood pool in their legs, make themselves not be able to urinate and so on. He looked me square in the face and said sure. People people can pretend to be in comas all the time. I'm not crazy!!! He's crazy!!!
How is it that I was diagnosed by three doctors that all gave me the same diagnosis and yet one doctor (who refused to even look at my past medical records) makes everyone jump ship??? Seriously? I'm no rocket scientist but lets just look at the facts here.
Where does it end? Who am I supposed to turn to for help? No one believes I'm sick. Meanwhile, I'm the one suffering. I went to Mayo for treatment not a diagnosis. Now I have nothing. In case some of you are wondering, the catalyst for all of this is is that the doctor from Mayo didn't bother to send my test results or notes until two months later...and here we are. Ugh!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Tuesday, December 28, 2010
Thursday, December 23, 2010
Invisible Enemy
I'm fighting an enemy
that I can not see.
It's weapons and tactics
have overtaken me.
But even in darkness,
I walk by light.
My Lord, My Savior, is by my side.
He lets me know that
although times are tough,
in his perfect way, his grace is enough.
I'm fighting an enemy
that I can not see.
This Dysautonomia will not beat me. -A. Holt
that I can not see.
It's weapons and tactics
have overtaken me.
But even in darkness,
I walk by light.
My Lord, My Savior, is by my side.
He lets me know that
although times are tough,
in his perfect way, his grace is enough.
I'm fighting an enemy
that I can not see.
This Dysautonomia will not beat me. -A. Holt
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!!!
Thursday, October 14, 2010
I'm in a Mayo State of Mind
Yes, I know I'm up again...but you would be too if you had the day I did. God had come through for me today in ways I never dreamed he would. All in one day, (4 days before I leave for Mayo) while Justin and I have been praying and stressing about how we are going to pay for this trip knowing that it is what has to be done...I get a phone call telling me that my entire stay at one of the nicest hotels that is connected to the hospital is going to be completely paid for...for ALL EIGHT NIGHTS! How awesome is God? Then, I guess he decided he wasn't done blessing me today so he was going to throw in a luggage carrier for our jeep delivered to our door...how did I sign up for this deal? I tell you God is great and the greatness of his love never ceases to amaze me. He puts some pretty amazing people in our lives for a reason. I'm learning what happens if you let them in...or if you don't one of the very generous people that is helping my family I don't even know! God's people are amazing. Although I am up, at 3:59 still with a migraine, I am choosing to praise him! Because he is worthy to be praised! I think I need to listen to some Billy Joel now...
Wednesday, October 13, 2010
Brake the cycle
I had to brake this cycle of not writing for a few days and pull myself out of the funk I've been allowing myself to live in. I have been very sick and it has just consumed me the last week or so. So much so, that I haven't done much more than gotten out of bed. I just can't take that. I'm breaking that cycle. This is for the birds. Sick or not I have got to press on. My POTS symptoms have continued to get worse over the last week and I have done everything within my power to just stay out of the hospital. I've been getting IV's at home and suffering through some of the most ridiculous pain in the world. Not to mention my ever famous migraines :) This particular one has had me on my butt for two days. Satan tried to talk me out of going to Bible study tonight since I didn't do the lesson...but I knew that was where I needed to be. I'm so glad I went. I had to leave early because that room wouldn't stop spinning (don't understand why they couldn't get that under control) and I felt myself crashing. But I made it almost the whole time! I was quite proud of myself. Now I'm up because, my head is still pounding if any of this doesn't make sense its because I'm seeing it all in double (sorry), and I can't take anymore pain medication until 2:30. Whoo Hoo! I hate being so dependent on these drugs but right now they keep me out of the hospital and I only have 6 days till MAYO!!! I can not wait.
I have two prayer requests tonight
1. Please pray for my friends the Kent Family who just lost their father. Please pray that their whole family may just be surrounded by the peace of Christ.
2. For my dear friend Lyla who just had to send her best four legged friend home to be with the Lord. It is always to hard to lose a best friend.
Love you all. Continue to support Hope for Blue!
I have two prayer requests tonight
1. Please pray for my friends the Kent Family who just lost their father. Please pray that their whole family may just be surrounded by the peace of Christ.
2. For my dear friend Lyla who just had to send her best four legged friend home to be with the Lord. It is always to hard to lose a best friend.
Love you all. Continue to support Hope for Blue!
Thursday, October 7, 2010
We have lift off!!!
It is officially launched. Hope for Blue Dysautonomia Foundation has a website! http://www.hopeforblue.com/ It is still a work in progress but YAY!!!
Wednesday, October 6, 2010
Big News (Part 2)
Big News!
Saturday, October 2, 2010
Hmmm....
Hmmm...What do I say when I don't know what to say. I have continued to be amazed by the greatness of my God and what he has done in my life recently. He has brought one of my best friends safely through surgery this week, placed new friends (that I think have hidden wings) in my life, blessed me with six year of marriage to the man of my dreams and the blessings just keep coming. However, in the midst of his greatness, I am still human. I still get scared, I still question and yes...although it gets me nowhere I worry.
This has been a rough week and the reason for no recent post. I apologize for that. I am now officially off any and all meds for my POTS. This is not a good thing. I am growing weaker by the day. The doctor has been steadily taking me off one medication after another for one side effect or another. The one medication that has seemed to make the biggest difference for me DDAVP, which raises my blood pressure and creates blood volume two of my biggest problems, has began causing major bladder problems for me. I believe I am now on day four or five of being off of it and let me tell I'm going no where fast but the floor! (I'm not joking, I really keep ending up on the floor) The doctor thinks that he has exhausted all of his options until further review from Mayo so...18 days and counting. (I guess I'm unfired now????)
I have some exciting news for those of you with Dysautonomia and those of you that support us. Look for it coming by the end of next week via my blog. Also, I have now created an e-mail address where anybody can feel free to contact me for support, questions or just and ear to listen. It is potsawareness@hotmail.com. Keep raising awareness! Keep standing up for those of us that sometimes can't!
This has been a rough week and the reason for no recent post. I apologize for that. I am now officially off any and all meds for my POTS. This is not a good thing. I am growing weaker by the day. The doctor has been steadily taking me off one medication after another for one side effect or another. The one medication that has seemed to make the biggest difference for me DDAVP, which raises my blood pressure and creates blood volume two of my biggest problems, has began causing major bladder problems for me. I believe I am now on day four or five of being off of it and let me tell I'm going no where fast but the floor! (I'm not joking, I really keep ending up on the floor) The doctor thinks that he has exhausted all of his options until further review from Mayo so...18 days and counting. (I guess I'm unfired now????)
I have some exciting news for those of you with Dysautonomia and those of you that support us. Look for it coming by the end of next week via my blog. Also, I have now created an e-mail address where anybody can feel free to contact me for support, questions or just and ear to listen. It is potsawareness@hotmail.com. Keep raising awareness! Keep standing up for those of us that sometimes can't!
Saturday, September 25, 2010
Dizzy shaded glasses?
Lots of people see the world through "rose colored glasses." Those of of us with Dysautonomia see it more through "dizzy shaded glasses?" I guess this is the best way that I can describe it. Here's another little window into my world. Mornings are usually the hardest on us. When I wake up in the morning, I never feel well rested. Those days of being like a child and feeling refreshed and ready to attack my day are long gone. I feel like I start at the bottom of a hole and have to figure out how I'm gonna get out today. Some days, I feel like God is my cheerleader sitting there cheering me on telling me you can do it! Others...I feel like why bother? The end result is always the same? Why keep trying? Because I have faith in my God that's why! He's gonna find a way to make this better. Maybe not even better in this lifetime but when I'm finally called home to be with him.
As I was saying though, I wake up and once I finally muster the energy to sit up (this may take several trys) my feet hit the ground. I dread this moment every morning. The pain that shoots from my feet up into my legs, the second I put any pressure on them, is unbearable. Through all of this I've been holding my bladder so long that I need to make an A line for the bathroom. The only problem is...I am now in pain since the nerves in my feet are going crazy and now all the blood from my head has proceeded to rush to my feet (doesn't this sound like fun?) so now I'm so dizzy I can barely see the bathroom that is only about five feet away. I stumble holding onto the bed and anything else as my vision goes in and out. I try to defeat my never ending enemy...gravity. If I make it to the bathroom without falling I have won the game! Whoo Hoo Play again tomorrow. It never ends! Kind of like that movie with Bill Murray, Ground Hog Day.
That's okay though. I'm gonna keep on keepin on as my good friend Lyla tells me.
I've had a lot of obstacles thrown my way over the last couple of weeks whether it be family or sickness or big plans that God has for me. I'm excited, but its been hard too. However, to be very cliche, when ever God closes one door he opens an other. God has began to place some amazing women in my life and I couldn't be more excited about it! I was even was talking to some random person on the phone today (can't tell you who because it will give you a hint as to upcoming posts) but turns out the guy knew what POTS was! I thought I was going to do a back flip! He was premed but that is besides the point...he knew...and that was enough for me. One more thing and then I will close for today. I also got an e-mail from someone from Australia who has POTS! POTS has gone worldwide people! We're gonna get the word out there and we're gonna stand up for those of us that sometimes can't! Love you all!
As I was saying though, I wake up and once I finally muster the energy to sit up (this may take several trys) my feet hit the ground. I dread this moment every morning. The pain that shoots from my feet up into my legs, the second I put any pressure on them, is unbearable. Through all of this I've been holding my bladder so long that I need to make an A line for the bathroom. The only problem is...I am now in pain since the nerves in my feet are going crazy and now all the blood from my head has proceeded to rush to my feet (doesn't this sound like fun?) so now I'm so dizzy I can barely see the bathroom that is only about five feet away. I stumble holding onto the bed and anything else as my vision goes in and out. I try to defeat my never ending enemy...gravity. If I make it to the bathroom without falling I have won the game! Whoo Hoo Play again tomorrow. It never ends! Kind of like that movie with Bill Murray, Ground Hog Day.
That's okay though. I'm gonna keep on keepin on as my good friend Lyla tells me.
I've had a lot of obstacles thrown my way over the last couple of weeks whether it be family or sickness or big plans that God has for me. I'm excited, but its been hard too. However, to be very cliche, when ever God closes one door he opens an other. God has began to place some amazing women in my life and I couldn't be more excited about it! I was even was talking to some random person on the phone today (can't tell you who because it will give you a hint as to upcoming posts) but turns out the guy knew what POTS was! I thought I was going to do a back flip! He was premed but that is besides the point...he knew...and that was enough for me. One more thing and then I will close for today. I also got an e-mail from someone from Australia who has POTS! POTS has gone worldwide people! We're gonna get the word out there and we're gonna stand up for those of us that sometimes can't! Love you all!
Tuesday, September 21, 2010
My God is soooooo good!
I serve an amazing God. You know, even during all of this craziness, that is my life. God blesses me everyday. For those of you that are close to me, you know that I have been hoping and praying for acceptance to the Mayo Clinic in Rochester, MN. This is where some of the best POTS doctors in the nation are. I've been on a waiting list and have been told I was accepted but that it could take several months to a year to be seen. I have had every doctor call, fax and do whatever it is that I can to expedite the process. I call about every other day and get the same answer..."I'm very sorry Mrs. Holt but we just can not give you an accurate time on your wait. The list is very long." After my hospital stay last week, and so many of your prayers yesterday when I made my call (like I always do) the lady on the other end put me on hold as usual, but this time came back and said...."Mrs. Holt we have you down for an appointment on October 20th!" I swear my heart stopped. I asked her to double check and she said yes it was right that I would be getting a packet in the mail. How amazing is God?????? I hung up the phone and started crying out of pure joy. God had heard me. He had answered my prayer. Not in my timing but in his perfect way. I can't believe I will be there in less than a month. I am so thankful!
Sunday, September 19, 2010
Reliving the nightmare
Do you ever have a bad dream and then wake up but you're too scared to go back to sleep because you're afraid you might have that dream again? I feel like this is my life sometimes. I try to stay positive and hold tight to my faith but I'm telling you I came home from the hospital in worse condition than when I went in. I'm weaker now than I have ever been. I am constantly falling and feeling completely and utterly confused! Sometimes, I feel like I have Alzheimer's at the age of 27. Something is just not right. The doctor's don't have a clue...of course. I'm maintaining my hope though.
Tonight, Justin was shaving his head (which I was in strong opposition to but that is a whole other story) and Collin and I we sitting in the bedroom watching him cut his hair and laughing at him while he was doing it. I was weak but Collin was sitting still so it was ok. Justin asked me if he could run through the shower so he could wash the hair off. I thought I could handle it. I really did. We have a baby gate at the entrance to our room so he couldn't escape but there were lots of little distractions for the little guy. Justin wasn't in the shower five minutes and when he got out he yelled "are you ok?" I was sobbing. Collin was running back and forth and was hiding along side of the bed where I was unable to bend down to see him. My heart was tachycardic my feet were blue from trying to stay upright for too long. I just broke down. "I can't take care of my son" I told Justin. This is a nightmare I relive everyday. All I ever wanted was to be a mom. The fact that I can't take care of my son makes me angry and sad all at the same time.
Why me God? Why did I have to be the one you chose to allow to have POTS? Was it a lesson? Is it to help someone else? Is it to help myself? I don't know? I may never know. I was reading in my Bible last night and as I was lying here crying in pain as I do a lot of nights I read Proverbs 19:21 Many are the plans in a human heart, but it is the Lord's purpose that prevails. Got it God I thought. I will not commence my pity party. I do have so much to be thankful for. I just need to be reminded of that sometimes.
Tonight, Justin was shaving his head (which I was in strong opposition to but that is a whole other story) and Collin and I we sitting in the bedroom watching him cut his hair and laughing at him while he was doing it. I was weak but Collin was sitting still so it was ok. Justin asked me if he could run through the shower so he could wash the hair off. I thought I could handle it. I really did. We have a baby gate at the entrance to our room so he couldn't escape but there were lots of little distractions for the little guy. Justin wasn't in the shower five minutes and when he got out he yelled "are you ok?" I was sobbing. Collin was running back and forth and was hiding along side of the bed where I was unable to bend down to see him. My heart was tachycardic my feet were blue from trying to stay upright for too long. I just broke down. "I can't take care of my son" I told Justin. This is a nightmare I relive everyday. All I ever wanted was to be a mom. The fact that I can't take care of my son makes me angry and sad all at the same time.
Why me God? Why did I have to be the one you chose to allow to have POTS? Was it a lesson? Is it to help someone else? Is it to help myself? I don't know? I may never know. I was reading in my Bible last night and as I was lying here crying in pain as I do a lot of nights I read Proverbs 19:21 Many are the plans in a human heart, but it is the Lord's purpose that prevails. Got it God I thought. I will not commence my pity party. I do have so much to be thankful for. I just need to be reminded of that sometimes.
Friday, September 17, 2010
I'm just saying...
So, after a week long stay in the hospital I have realized a few things. There is some validity to the call don't fall signs...I'm just saying. As for us postys girls, if you want me to call, don't take it out of my room. I now have the egg on my forehead to prove I should have called before I fell into the metal door frame of the bathroom in the middle of the night...I'm just saying. Did they really think in my (attention this is my graphic disclaimer) dizzy, vomiting, brain fog, low blood pressure, migraine, dehydrated and malnourished state that I was going to remember to do it on my own?
I'm not joking when I say two days ago I was in the worst pain I have EVER been in, in my entire life. The migraine went on for 6 days and I literally thought I was going to go insane. Having a baby was less painful than the the things my body was doing. I would never wish it on any one. I didn't get to see my baby for three days because two of the days I was incoherent and the third they kept telling me I was going home and then I wasn't it was a mess. By the time Friday rolled around, I was depressed because I missed my family so much.
Then this is my favorite, so, the doctor who has been treating me for my POTS the same doctor that keeps telling me its not that bad. If its not that bad them why is he firing me? He says he doesn't know what else to do with me...but he doesn't know who would either. Really? Do they give refunds on the degrees given from the school he's attended? I'm just saying. I have a bit of anger and I realize this but who wouldn't. I'm trying so hard not to give up on myself when everyone else is giving up on me. I'm not going down without a fight! Phil. 4:13 I can do all things through Christ who strengthens me. Even if I'm I'm the only one left standing (relatively speaking.)
I did get my POTS doctor, the one that does not know what to do with me, to get on the phone and with Mayo and get me on the Semi Urgent List...Praise God!!! We are now awaiting a phone call to tell us when the appointment will be so please, please, please join me and my family in prayer. We really believe that this could be the answer to a better life for me.
My POTS doctor swears that all the symptoms are not connected but everyone else on the face of the planet says that they are. I agree that maybe the brain cyst is unrelated but the vomiting and all of that is typical POTS symptoms and he is telling me he can not treat me for those things?????? I'm so confused!!! As I paused between puking spells to try and explain to him how I was feeling and sobbing all the way that was the first time I have ever seen my doctor really show any sign of emotion. Maybe he finally got it. I don't know.
Nevertheless, I am home now. I am completely drained, exhausted and thankful to be out of there all at the same time...I'm just saying.
I'm not joking when I say two days ago I was in the worst pain I have EVER been in, in my entire life. The migraine went on for 6 days and I literally thought I was going to go insane. Having a baby was less painful than the the things my body was doing. I would never wish it on any one. I didn't get to see my baby for three days because two of the days I was incoherent and the third they kept telling me I was going home and then I wasn't it was a mess. By the time Friday rolled around, I was depressed because I missed my family so much.
Then this is my favorite, so, the doctor who has been treating me for my POTS the same doctor that keeps telling me its not that bad. If its not that bad them why is he firing me? He says he doesn't know what else to do with me...but he doesn't know who would either. Really? Do they give refunds on the degrees given from the school he's attended? I'm just saying. I have a bit of anger and I realize this but who wouldn't. I'm trying so hard not to give up on myself when everyone else is giving up on me. I'm not going down without a fight! Phil. 4:13 I can do all things through Christ who strengthens me. Even if I'm I'm the only one left standing (relatively speaking.)
I did get my POTS doctor, the one that does not know what to do with me, to get on the phone and with Mayo and get me on the Semi Urgent List...Praise God!!! We are now awaiting a phone call to tell us when the appointment will be so please, please, please join me and my family in prayer. We really believe that this could be the answer to a better life for me.
My POTS doctor swears that all the symptoms are not connected but everyone else on the face of the planet says that they are. I agree that maybe the brain cyst is unrelated but the vomiting and all of that is typical POTS symptoms and he is telling me he can not treat me for those things?????? I'm so confused!!! As I paused between puking spells to try and explain to him how I was feeling and sobbing all the way that was the first time I have ever seen my doctor really show any sign of emotion. Maybe he finally got it. I don't know.
Nevertheless, I am home now. I am completely drained, exhausted and thankful to be out of there all at the same time...I'm just saying.
Wednesday, September 15, 2010
It would only be fitting
It would only be fitting that during National Dysautonomia Awareness Week (when I had all of these grand plans for raising awareness)that I would land myself right back in the hospital. I've been in here since Monday. Low blood pressure, tremors, dehydration, migranes you name it I've got it going on right now. Maybe that was God's plan though. I've taught several nurses about POTS and most of them are wearing blue ribbons. I appreciate all the prayers!!! I feel a bit better today. If I could see out of my left eye life would be nicer though. My migrane (day 4 I believe with this migrane). Who can keep count at this point though. My vision is so blurred by it. I miss my son so much! I think that's the hardest part. My doc has officially told me to see someone else which are alwYs encouraging words but at least he's calling Mayo today whoo hoo. Keep raising awarness everybody! I'm doing my best here but I need some help.
Thursday, September 9, 2010
Oh so childlike
It's funny. We tend to spend our entire youth talking about what we are going to do when we grow up. How we are going to claim our independence! Once we've finally obtain that "adulthood" status most of wonder what all the fuss was for. Sure, no one tells me when to go to bed or how late I can stay out and so on anymore but what are these things people keep sending me called bills??? We now have to fend for ourselves and there is no one there to "clean up our mess" when we make a mistake. No one that is except...God.
I have really been struggling with the loss of the independence I worked so very hard to obtain. For a person who was very independent, I went to very dependent very fast. Almost like a child again. I am unable to make decisions for myself anymore because my illness and those that care for me make them all for me. Often times I am told not to do things (out of love and protection) because it is not safe for me or I need to conserve my energy (or my spoons rather.) If you have not read the "Spoon Theory" I highly encourage you to. There is a link to it on my blog. I feel as though I have regressed in life back to a state of childlikeness. In many ways physically I have and that is a though pill to swallow. However, the mental is extremely disheartening.
I was in my senior year of college the semester prior to my student teaching when I had to quit school. I was on track to my dream of becoming an ESL Elementary teacher. Throughout my observation hours in classrooms I administered many reading assesments. Last night, I was taken back to these. It was a very eye-opening experience. Justin and I were laying in bed discussing some scripture. I was reading something to him aloud when he jokingly interrupted me. I joked back saying "you're going to interrupt the word of God." Then as we both have a habit of doing, I began to take the joke further reading Psalms VERY LOUD so he could hear me through the bathroom door. Ha! He came out laughing and I kept going until I got to the end of the page. I stopped and looked at Justing and said "was I the only one who heard something wrong with that?" "What do you mean?" he said. "The way I was reading, what is wrong with me?" He responded with "I thought you were reading that way on purpose." Tears filled my eyes as I replied "No." I sounded like an elementary student. I was unable to read with any sort of fluidity, speed or attention to puncuation. I had at times to stop and reread things and self-correct myself. It would take me a minute to read a word not because I didn't know it but because I couldn't remember how to say it. It was so sad.
While I was reading though Psalms, 143:1 really tugged at my heart. "Lord, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief." This IS the CRY of my heart! Relief from the silence. I have been crying and pouring out my heart to God and feel as though he still remains silent with me. I've really been trying to examine my relationship with him and why it is that this intimate relationship he speaks of wanting all throughout the Bible is not there for me right now. Why? A sweet friend of mine sent me a book called Disappointment with God. I've been reading it and it is truly amazing. As I was reading through it tonight, the author was discussing God's relationship with his chosen people and how he desired that relationship. He said "He wanted what any parent wants: a happy household of children who return their parent's love." This got me to thinking...that's what I want! I want God to return my love! (But of course I want him to return it in the way I want it.) God does love me. I know this. He is providing for me in countless ways...I just want to feel him. I want to feel his peace...RELIEF from all of this brokeness. I want to feel as though I am me and that he recognizes me for that and not just someone to take care of.
Earlier tonight, my father came to visit and I was in and out of conciousness. I was having bad spells one right after the other. I listened as my husband and my father talked about who was going to watch Collin and I while my parents were out of town and my husband was at work this week. I wanted to scream...I'm right here! I know that they meant well but, as I have now expressed to my husband, I want a say in who "babysits" me. Maybe I can't do much, but I am still and adult with real feelings and opinions. I think sometimes everyone gets so caught up in taking care of me that they forget to ask how I am...not how sick I am...but how I am. It's been awhile since someone has. It's always do you need water? Do you need your meds? Do you need me to adjust the thermostat? I wish I had the freedom to be me. To have a lunch date with a friend, or a date with my husband. I've decided that my insomnia is self induced. I think that I truly stay awake to have just a little taste of freedom. For those few hours there is no one making a fuss over me, I can sit in silence and read, or just watch something on tv that I want to. Although, I am here and attempting to engage during the day I feel obligations. I feel the obligation to interact with my son as much as possible so that he knows Mommy is ok. Then when he goes to sleep, I feel obligated to entertain my mom who is here to help me and has nothing to do when Collin is sleeping. Then when Justin gets home, I feel obligated to spend time with him because I missed him and I haven't seen him. I don't mean obligated in a negative context it is just simply that an obligation. I never get a break. If I sleep my sweet baby screams for me and my husband says he misses me so I feel guilty. I feel like I need a break from the "getting through the day." I really struggle with who I am anymore. I feel like a child trying to get to adulthood...again.
I have really been struggling with the loss of the independence I worked so very hard to obtain. For a person who was very independent, I went to very dependent very fast. Almost like a child again. I am unable to make decisions for myself anymore because my illness and those that care for me make them all for me. Often times I am told not to do things (out of love and protection) because it is not safe for me or I need to conserve my energy (or my spoons rather.) If you have not read the "Spoon Theory" I highly encourage you to. There is a link to it on my blog. I feel as though I have regressed in life back to a state of childlikeness. In many ways physically I have and that is a though pill to swallow. However, the mental is extremely disheartening.
I was in my senior year of college the semester prior to my student teaching when I had to quit school. I was on track to my dream of becoming an ESL Elementary teacher. Throughout my observation hours in classrooms I administered many reading assesments. Last night, I was taken back to these. It was a very eye-opening experience. Justin and I were laying in bed discussing some scripture. I was reading something to him aloud when he jokingly interrupted me. I joked back saying "you're going to interrupt the word of God." Then as we both have a habit of doing, I began to take the joke further reading Psalms VERY LOUD so he could hear me through the bathroom door. Ha! He came out laughing and I kept going until I got to the end of the page. I stopped and looked at Justing and said "was I the only one who heard something wrong with that?" "What do you mean?" he said. "The way I was reading, what is wrong with me?" He responded with "I thought you were reading that way on purpose." Tears filled my eyes as I replied "No." I sounded like an elementary student. I was unable to read with any sort of fluidity, speed or attention to puncuation. I had at times to stop and reread things and self-correct myself. It would take me a minute to read a word not because I didn't know it but because I couldn't remember how to say it. It was so sad.
While I was reading though Psalms, 143:1 really tugged at my heart. "Lord, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief." This IS the CRY of my heart! Relief from the silence. I have been crying and pouring out my heart to God and feel as though he still remains silent with me. I've really been trying to examine my relationship with him and why it is that this intimate relationship he speaks of wanting all throughout the Bible is not there for me right now. Why? A sweet friend of mine sent me a book called Disappointment with God. I've been reading it and it is truly amazing. As I was reading through it tonight, the author was discussing God's relationship with his chosen people and how he desired that relationship. He said "He wanted what any parent wants: a happy household of children who return their parent's love." This got me to thinking...that's what I want! I want God to return my love! (But of course I want him to return it in the way I want it.) God does love me. I know this. He is providing for me in countless ways...I just want to feel him. I want to feel his peace...RELIEF from all of this brokeness. I want to feel as though I am me and that he recognizes me for that and not just someone to take care of.
Earlier tonight, my father came to visit and I was in and out of conciousness. I was having bad spells one right after the other. I listened as my husband and my father talked about who was going to watch Collin and I while my parents were out of town and my husband was at work this week. I wanted to scream...I'm right here! I know that they meant well but, as I have now expressed to my husband, I want a say in who "babysits" me. Maybe I can't do much, but I am still and adult with real feelings and opinions. I think sometimes everyone gets so caught up in taking care of me that they forget to ask how I am...not how sick I am...but how I am. It's been awhile since someone has. It's always do you need water? Do you need your meds? Do you need me to adjust the thermostat? I wish I had the freedom to be me. To have a lunch date with a friend, or a date with my husband. I've decided that my insomnia is self induced. I think that I truly stay awake to have just a little taste of freedom. For those few hours there is no one making a fuss over me, I can sit in silence and read, or just watch something on tv that I want to. Although, I am here and attempting to engage during the day I feel obligations. I feel the obligation to interact with my son as much as possible so that he knows Mommy is ok. Then when he goes to sleep, I feel obligated to entertain my mom who is here to help me and has nothing to do when Collin is sleeping. Then when Justin gets home, I feel obligated to spend time with him because I missed him and I haven't seen him. I don't mean obligated in a negative context it is just simply that an obligation. I never get a break. If I sleep my sweet baby screams for me and my husband says he misses me so I feel guilty. I feel like I need a break from the "getting through the day." I really struggle with who I am anymore. I feel like a child trying to get to adulthood...again.
Tuesday, September 7, 2010
Monday, September 6, 2010
My bags are packed I'm on the guilt trip
Lately, I've been grieving. POTS has changed my life (I feel as though I have lost my identity, my freedom, my life at times), my family's life (my husband has pushed back his calling to go to seminary, lost his free time, has taken on two full time jobs, my baby has lost the active and fun mom he once had)and even my friend's lives (some of them have stood by me as if they were family and some have disappeared). Grief is a tricky thing to deal with.
Over the last couple of days, I have shut down. I've been extremely sick and I am ashamed to say at times have lashed out at my family in anger. Honestly, I'm not mad at them. They did nothing wrong. It's me. I'm frustrated (to put it lightly.) I've had a lot of guilt that I've been carrying around. I know, I know...that is not from God. My husband reminds me of this until he is blue in the face. He keeps telling me that yes it is normal but it's what you do with those feelings that matter. Do you dwell upon them? Or do you dismiss them? Is it really that black and white? For example, the other night I was watching the news and there was a story about a boy that had been bitten by a rattlesnake. They showed his wounds and I have to admit they looked pretty bad. The news reporter talked about how the boy spent five days in the hospital...but was expected to return to school on Monday. Oh! I felt my blood boil with rage...(I know that this is not a normal response to a story of this nature. As a Christian woman, I should be praising God for his recovery.) Instead I was angry! I heard the boy say how he was so thankful to make it though and how he learned so much from his time in the hospital. I'm sorry, all I was thinking was five days in the hospital and he's healed??? Where do I sign up for that gig? Let's go! Then the guilt set in. How dare I feel sorry for myself when there are people with terminal cancer who would trade places with me in an instant. I feel guilty.
Next to my bed I have a post it note with Matthew 16:23 written on it. It is the first thing I see in the morning when I wake up. "Get behind me Satan, you are a stubbling block to me. You do not have in mind the concerns of God, but merely human concerns." I recite this over and over in my head all throughout the day. I have prayed until I have just run out of words. I go to God and simply beg for help these days. "I don't know what to ask for anymore I tell him." I feel like he isn't there (of course I know he is) but I can't feel him, I can't hear him...I just uuuuugggggghhhhh.
Today at church I cried to the point I had to physically leave the sactuary. I left my precious little boy as I was wheeled away he was screaming and crying for me. He doesn't understand. He acts out and yells for me when he knows I am sick. He can tell a difference between my good days and my bad days. How does such a small child understand so much? The heart that I prayed for everynight while he was in my belly is truly inside that little guys chest. I feel guilty for his pain. I feel guilty that he begs to go outside and can't because I can't be left alone. I feel guilty for everything my husband does and everything my illness is holding him back from. I have the most amazing husband in the world. He'd give up everything for me without a second thought...so why do I feel so guilty? I didn't bring this illness on myself. I've never been one to ask for help. I've always prided myself in being an independent person. Now I am dependent in every sense of the word.
I love my Father in Heaven with all of my heart. His plan just doesn't make sense to me. Not that I think I am worthy of knowing his plan...but it is so hard to see him preform such miracles in people's lives and not know why he has not done the same for me. I wonder if I'm doing something wrong, if there is a lesson to be learned that I have just not grasped yet. If so, I really wish he would knock me on the head with it! I go back and forth with peace. There are periods of time where I feel as though I have come to terms with my illness and that I am ready to make changes, to make my life the best it can be... given the situation. For example, leaving our house, moving to an apartment that I can walk around a little bit better, filing for disability. I've tried to embrace it. Then there are the times where I get so tired of people telling me "you're going to get better...I just know it! God is going to heal you." Well, what if he doesn't why is that not ok with anyone? Personally, I want to move on. I want to know that I am going to be sick or I want to be healed. I'm tired of riding this emotional rollar coaster...where is the exit?
Over the last couple of days, I have shut down. I've been extremely sick and I am ashamed to say at times have lashed out at my family in anger. Honestly, I'm not mad at them. They did nothing wrong. It's me. I'm frustrated (to put it lightly.) I've had a lot of guilt that I've been carrying around. I know, I know...that is not from God. My husband reminds me of this until he is blue in the face. He keeps telling me that yes it is normal but it's what you do with those feelings that matter. Do you dwell upon them? Or do you dismiss them? Is it really that black and white? For example, the other night I was watching the news and there was a story about a boy that had been bitten by a rattlesnake. They showed his wounds and I have to admit they looked pretty bad. The news reporter talked about how the boy spent five days in the hospital...but was expected to return to school on Monday. Oh! I felt my blood boil with rage...(I know that this is not a normal response to a story of this nature. As a Christian woman, I should be praising God for his recovery.) Instead I was angry! I heard the boy say how he was so thankful to make it though and how he learned so much from his time in the hospital. I'm sorry, all I was thinking was five days in the hospital and he's healed??? Where do I sign up for that gig? Let's go! Then the guilt set in. How dare I feel sorry for myself when there are people with terminal cancer who would trade places with me in an instant. I feel guilty.
Next to my bed I have a post it note with Matthew 16:23 written on it. It is the first thing I see in the morning when I wake up. "Get behind me Satan, you are a stubbling block to me. You do not have in mind the concerns of God, but merely human concerns." I recite this over and over in my head all throughout the day. I have prayed until I have just run out of words. I go to God and simply beg for help these days. "I don't know what to ask for anymore I tell him." I feel like he isn't there (of course I know he is) but I can't feel him, I can't hear him...I just uuuuugggggghhhhh.
Today at church I cried to the point I had to physically leave the sactuary. I left my precious little boy as I was wheeled away he was screaming and crying for me. He doesn't understand. He acts out and yells for me when he knows I am sick. He can tell a difference between my good days and my bad days. How does such a small child understand so much? The heart that I prayed for everynight while he was in my belly is truly inside that little guys chest. I feel guilty for his pain. I feel guilty that he begs to go outside and can't because I can't be left alone. I feel guilty for everything my husband does and everything my illness is holding him back from. I have the most amazing husband in the world. He'd give up everything for me without a second thought...so why do I feel so guilty? I didn't bring this illness on myself. I've never been one to ask for help. I've always prided myself in being an independent person. Now I am dependent in every sense of the word.
I love my Father in Heaven with all of my heart. His plan just doesn't make sense to me. Not that I think I am worthy of knowing his plan...but it is so hard to see him preform such miracles in people's lives and not know why he has not done the same for me. I wonder if I'm doing something wrong, if there is a lesson to be learned that I have just not grasped yet. If so, I really wish he would knock me on the head with it! I go back and forth with peace. There are periods of time where I feel as though I have come to terms with my illness and that I am ready to make changes, to make my life the best it can be... given the situation. For example, leaving our house, moving to an apartment that I can walk around a little bit better, filing for disability. I've tried to embrace it. Then there are the times where I get so tired of people telling me "you're going to get better...I just know it! God is going to heal you." Well, what if he doesn't why is that not ok with anyone? Personally, I want to move on. I want to know that I am going to be sick or I want to be healed. I'm tired of riding this emotional rollar coaster...where is the exit?
Friday, September 3, 2010
Is anyone aware?
I would be willing to bet that if you asked 50 random people on the street what Dysautonomia is, or what POTS is for that matter, they wouldn't have a clue what you were talking about. What upsets me even more is that I could come up with a list of pretty close to 50 people that I have encountered just the DFW area that are affected with this invisible illness. So why is it that no one knows we are here? I'm not talking just talking about random people...I'm talking about doctors too! Throughout the course of my illness I have made several visits to the ER. Every time (with the exception on one) the doctor has had no idea what was wrong with me. It has become my job, someone who has never spent a day in medical school, to educate my doctors. I actually had one doctor that when I asked if he knew what POTS was responded with "No, but I can google just like anyone else." Really??? That's what you get paid the big bucks for? So, because no one knows I suffer and so do so many others. I have one doctor that treats me for my POTS here in Dallas. To my knowledge, there are two others that treat the illness in the area as well. One only treats from the pediatric side and I don't think I have found the other. I have met people in my doctor's office that travel from across the state to see my doctor simply because there is no one else! My primary care has no experience with the illness and neither do any of my other doctors for that matter. I had to beg a paramedic not to give me nitrates (because he thought I was having a heart attack...which I knew I was not) on my last ambulance ride. After he pulled out his nifty portable laptop and googled he said "wow, you're right that would have been really bad for you." What if I wasn't able to get the words out? I don't even want to think about what could've happened to me. Well...now my only doctor has pretty much wiped his hands of me. We have reached a "dead end" he told me. You really need to go to Mayo, I am not giving up on you but we are really at a stand still until you see them, he tells me. What he fails to mention is that the Mayo clinic has a several month waiting list. So what am I supposed to do in the meantime you ask? Apparently nothing. He doesn't know what to do. So, when I went into extreme chest pain Thursday morning, which was the same pain that put me in the hospital last week, I was curled up dry heaving into the "puke bucket" that is now a permant fixture beside my bed my POTS doctor told my husband to call my primary care doctor to treat my chest pain. My primary care doctor that doesn't know very much about POTS and like most doctors are scared to touch me because of all of the meds the POTS doctor has me on. But that was his solution...really??? It was obviously POTS related but he has given up on me I guess. By the way, we're still waiting on the call from the doctor my husband requested. What would happen if I had that attitude? If I just gave up when things got hard? I'm here to tell you God hasn't given up on me and I'm not giving up on myself! Somehow, someway I'm going to make a difference. I may only be one person...but I am one determined person.
Thursday, September 2, 2010
Window to my world
I awoke this morning in confusion to a trembling right arm. Within a few seconds, my iphone alarm was going off to inform me that it was time to take my meds. Due to the complete state of confusion I was in, this startled me sending me into tremors. What a way to wake up! There I was lying there...scared. I picked up my phone (which my sweet husband had laid beside me when he had slipped out to take care of the baby this morning...just like he always does.) Although I give him a hard time about keeping me in a "bubble" sometimes, he is always looking out for me. My body was shaking all over the place and I grabbed for my phone. The only downfall to the plan was that Justin had forgot to turn the ringer back on from last night. I laid there with the phone ringing and my body shaking. I mustarded up every last bit of enery I had to yell "Justin." He came running in and instantly said "oh no I forgot to turn my ringer on didn't I?" "I'm sorry baby," he said. He came over and sat by my side and began asking what he could do to help. We got the convulsions, tremors, seizures or whatever the doctor decides to call them today to stop through our well versed emergency routine. Which in the end, resulted in me passing out. When I came back around to be greeted by my husband's sweet face we took my blood pressure. 88/50...looks like its gonna be a rough day I thought. I looked at the clock and it was only 8:20.
Wednesday, September 1, 2010
Gotta start somewhere...
...I guess the beginning would be best. If you've read my "about me" section then you already know a little bit about me. You're probably wondering why I titled my blog My Invisible Thorn. Some of you may have already made the biblical reference. Wait...let me back up...let me preface this whole blog by saying I apologize in advance if at times nothing I say makes sense, there are spelling errors galore or grammatical errors that an elementary student would make. Brain fog is a side affect of my POTS. Yes, I am aware that there is a spell check on my computer, but that is assuming I remember to use it! Good...now that's out of the way. Paul talks in 2 Corinthians about his thorn. There are many speculations about exactly what his thorn was. However, most believe that this was a reference to a physical ailment he was plaqued with. POTS is my thorn, and it is invisible in so many ways. Unless you notice the severe bags under my eyes from my chronic insomnia or the wheelchair that I loath! You would probably mistake me for a normal person.
This all began when I became pregnant. (One of the biggest blessings in my life) In the early stages of my pregnancy I experienced some dizzy spells and massive fatigue. Normal pregnancy stuff I thought. At the time, I was very active, I was teaching dance. Very quickly I began cutting back on my hours and soon after had to quit altogether. During my second trimester I began passing out, having chest pain, shortness of breath and rapid heartrates. My blood pressure began dropping extremely low. No one could figure it out. I saw specialist after specialist and ultimately ended up on bed rest. It was not until much later in my pregnancy that I was diagnosed with POTS. It only got worse from there.
At 34 weeks gestation, I saw my cardiologist who took one look at my cold blue (literally) body and knew there was no way I could carry my baby any longer. I'll never forget that day April 21st 2009 it was a Tuesday. I left the doctors and soon recieved a phone call from my OB telling me to get to the hospital because we were going to have a baby on Thursday. They started me on steroid treatments to build up my sweet Collin's lungs. The doctor prepared me for the worst. She told me he would be about three pounds and that he would have to spend a good amount of time in the NICU. I was terrified! Justin and I (that's my husband) prayed that God would protect us both. I delivered my baby via c-section and by the grace of God he was 5 pounds 10oz. I actually got to take him out of the operating room with me! My OB was floored at how big he was. He was such a little fighter. That night he went into a bit of respiratory distress and was admitted to the NICU. He had no intentions of staying there though. He pulled his c-pack machine out the second day and was fine without it! Next he pulled out his IV. Each time he "self diagnosed" himself he was right. He was discharged from the NICU before I was discharged from the hospital! God is so amazing.
In the months after the birth I got better...well kind of. I was able to manage at least. I had good days and bad days but I was getting by. I had dizzy spells and days where there was no way I was getting out of bed...but I wasn't passing out. I dealt with my condition the best I could for about 14 months. Then this past June, it all fell apart. I began passing out again and was worse than I had ever been. I've been in and out of the hospital and am now on a ridiculous number of medicines to "help" (I use this term very loosely) regulate my autonomic nervous system. Even with all this I find it hard just to make it through the day sometimes. God has humbled me to a place I never knew I could be. I am now in a wheelchair, unable to take care of my son or myself on my own. God and my husband are the reasons I can make it through the day.
Never in a million years did I imagine myself in this place at only 27 years of age. Every day is a struggle for me and my family. Most days I hold tight to the promise that God has given me...that he will never leave me nor forsake me. But...just a moment of transparency here...there are those days when I am angry and don't understand why this is happening to me. But that is not for me know. (Easy said than done) I know that I am in God's hands and there is nowhere I would rather be!
This all began when I became pregnant. (One of the biggest blessings in my life) In the early stages of my pregnancy I experienced some dizzy spells and massive fatigue. Normal pregnancy stuff I thought. At the time, I was very active, I was teaching dance. Very quickly I began cutting back on my hours and soon after had to quit altogether. During my second trimester I began passing out, having chest pain, shortness of breath and rapid heartrates. My blood pressure began dropping extremely low. No one could figure it out. I saw specialist after specialist and ultimately ended up on bed rest. It was not until much later in my pregnancy that I was diagnosed with POTS. It only got worse from there.
At 34 weeks gestation, I saw my cardiologist who took one look at my cold blue (literally) body and knew there was no way I could carry my baby any longer. I'll never forget that day April 21st 2009 it was a Tuesday. I left the doctors and soon recieved a phone call from my OB telling me to get to the hospital because we were going to have a baby on Thursday. They started me on steroid treatments to build up my sweet Collin's lungs. The doctor prepared me for the worst. She told me he would be about three pounds and that he would have to spend a good amount of time in the NICU. I was terrified! Justin and I (that's my husband) prayed that God would protect us both. I delivered my baby via c-section and by the grace of God he was 5 pounds 10oz. I actually got to take him out of the operating room with me! My OB was floored at how big he was. He was such a little fighter. That night he went into a bit of respiratory distress and was admitted to the NICU. He had no intentions of staying there though. He pulled his c-pack machine out the second day and was fine without it! Next he pulled out his IV. Each time he "self diagnosed" himself he was right. He was discharged from the NICU before I was discharged from the hospital! God is so amazing.
In the months after the birth I got better...well kind of. I was able to manage at least. I had good days and bad days but I was getting by. I had dizzy spells and days where there was no way I was getting out of bed...but I wasn't passing out. I dealt with my condition the best I could for about 14 months. Then this past June, it all fell apart. I began passing out again and was worse than I had ever been. I've been in and out of the hospital and am now on a ridiculous number of medicines to "help" (I use this term very loosely) regulate my autonomic nervous system. Even with all this I find it hard just to make it through the day sometimes. God has humbled me to a place I never knew I could be. I am now in a wheelchair, unable to take care of my son or myself on my own. God and my husband are the reasons I can make it through the day.
Never in a million years did I imagine myself in this place at only 27 years of age. Every day is a struggle for me and my family. Most days I hold tight to the promise that God has given me...that he will never leave me nor forsake me. But...just a moment of transparency here...there are those days when I am angry and don't understand why this is happening to me. But that is not for me know. (Easy said than done) I know that I am in God's hands and there is nowhere I would rather be!
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