I've managed to keep my attitude in check for the most part lately. Just trying to get by. Trying not to get my hopes up. Every time I take a few steps forward I take a few back. I guess the thing that frustrates me more than anything is the fact that I can't work because doctor's can't agree about what's going on with me so I can't get disability. Not to mention that, the Social Security office doesn't take the time to find out what Dysautonomia is anyway. Oh well, guess I'll follow the breadcrumbs to the Social Security and have to fight with them.
Tuesday, April 12, 2011
Follow the breadcrumbs...
Do you remember the childhood story Hansel and Gretal? It has just dawned on me that this story is very applicable in my life. I feel like I'm constantly chasing little breadcrumbs. If I can just reach the next breadcrumb then I can make it through the day. This weekend was great! However, I used up all of my breadcrumbs and some. I thought I had it all planned out. I could afford to wear myself out since I was going to get my fluids Monday. The problem is that I depend on others to give me breadcrumbs and since I my nurse decided to cancel on Monday...guess who spent Monday and today in bed. It's okay...it was worth it I had a great time.
Monday, February 28, 2011
Yes...I am alive...
Yes, my dear followers, I am alive. So much has been going on in my life, that, to try and put it into words seemed impossible until now. Since my last blog I have learned new information about myself. I am now not only living with Dysautonomia, I am living with Fibromyalgia as well.
To be honest, at first the information upset me. I was mad and I thought it was simply something else to add to my already complicated life. My husband then made the point "Ya know it's really not anything new. You've been living with it all along. Now you just have a name for it." He was right. Did I mention how much I can't stand it when he's right? Here I was, just fine melting down, and he had to snap me out of it.
You know how it is, everyone that lives with Dysautonomia does. You go though the stages of grief...again, and again, and again. Some days I wake up and (pardon my language) want to scream "Screw you POTS! You're not gonna keep me down today." These days are usually followed by a recovery day or several for that matter. Other days I don't have the energy to fight and I want to give up. This was one of these days. I hadn't slept in two nights and I was in pain.
All this time I thought a lot of my symptoms were POTS and now I know that they are not. It's kinda crazy. I still don't know how to distinguish completely. So much pain... just throw it all under one heading "I hurts."
Since my last post, my husband has also started Seminary. I am very proud of him. However, this too has added an interesting dynamic to our lives. A disabled person, a grad student and a 22 month old toddler who doesn't sleep you do the math. My poor husband is always getting the short end of the stick and I have a lot of guilt because of this. I want to be able to take care of my son so my husband can study all day but I can't. Heck I want to be able to stay up all day but I can't. Instead my husband takes care of the both of us all day and then stays up until 12 doing homework. It breaks my heart when I hear him say he needs more time to study and I can't help him with that. Yet he always tells me "its not your fault you can't help it so there is no need for you to feel guilty." It is sweet of him to say but it doesn't help me.
I have improved. I haven't used my wheelchair in quite a while now and I get around with my cane for safety (sometimes for mine and sometimes for others :) I'm thankful for that. But I'm still fighting battles everyday. I hope everyone of you keeps fighting too. As my sweet husband reminded me again last night, we may never be better here on Earth. But we will be better in our eternal life. God Bless!
To be honest, at first the information upset me. I was mad and I thought it was simply something else to add to my already complicated life. My husband then made the point "Ya know it's really not anything new. You've been living with it all along. Now you just have a name for it." He was right. Did I mention how much I can't stand it when he's right? Here I was, just fine melting down, and he had to snap me out of it.
You know how it is, everyone that lives with Dysautonomia does. You go though the stages of grief...again, and again, and again. Some days I wake up and (pardon my language) want to scream "Screw you POTS! You're not gonna keep me down today." These days are usually followed by a recovery day or several for that matter. Other days I don't have the energy to fight and I want to give up. This was one of these days. I hadn't slept in two nights and I was in pain.
All this time I thought a lot of my symptoms were POTS and now I know that they are not. It's kinda crazy. I still don't know how to distinguish completely. So much pain... just throw it all under one heading "I hurts."
Since my last post, my husband has also started Seminary. I am very proud of him. However, this too has added an interesting dynamic to our lives. A disabled person, a grad student and a 22 month old toddler who doesn't sleep you do the math. My poor husband is always getting the short end of the stick and I have a lot of guilt because of this. I want to be able to take care of my son so my husband can study all day but I can't. Heck I want to be able to stay up all day but I can't. Instead my husband takes care of the both of us all day and then stays up until 12 doing homework. It breaks my heart when I hear him say he needs more time to study and I can't help him with that. Yet he always tells me "its not your fault you can't help it so there is no need for you to feel guilty." It is sweet of him to say but it doesn't help me.
I have improved. I haven't used my wheelchair in quite a while now and I get around with my cane for safety (sometimes for mine and sometimes for others :) I'm thankful for that. But I'm still fighting battles everyday. I hope everyone of you keeps fighting too. As my sweet husband reminded me again last night, we may never be better here on Earth. But we will be better in our eternal life. God Bless!
Tuesday, January 11, 2011
Even my issues have issues
You know, sometimes I think, even my issues have issues. Lately, my new array of symptoms have been more than overwhelming. For every one step I take forward I feel as though I take two steps back. The ongoing issue of not having a doctor is extremely frustrating and a huge source of anxiety to me. I want help so badly and yet I do not know where to find it. We (Justin and I) have been praying over the idea of moving north since I seem to do better in the cooler weather still the problem remains...who is going to treat me?
Moving would be a lot easier now considering as of next week Justin starts seminary full time online. So our family is completely mobile. We have nothing cementing us to Texas any longer. However, without me working, we are financing everything through student loans which is going to make life interesting.
I just long for a better life. As I say that, I feel convicted for even uttering those words. I have a roof over my head, a husband that loves me and a beautiful son. Some people don't even have that yet in my own selfish way I am angry that I am not healed and that I lay here in pain each and every day with these chronic migraines that we have yet to find a solution other than narcotics for. I seem to have a new issue every day and just when I think one is cleared up it seems as though it has created another for me to deal with.
Today I layed in bed in pain the sheets pulled over my head. I was talking myself out of going to Bible Study tonight. Then I quickly realized that was Satan trying to keep me from it. I pulled myself out of bed and got in the shower. I texted the two girls in my group that know about my situation because my bp has been extremely low the last few days. I wanted to make sure I was safe. As it turns out, they we both not going to be able to make it. I was so bummed. Once again, my illness had prevented me from doing something I wanted or rather needed to do. I knew I wouldn't be safe there alone. If something happened no one would understand or know what to do. Maybe I should just start wearing a sign. It is SO frustrating!
Moving would be a lot easier now considering as of next week Justin starts seminary full time online. So our family is completely mobile. We have nothing cementing us to Texas any longer. However, without me working, we are financing everything through student loans which is going to make life interesting.
I just long for a better life. As I say that, I feel convicted for even uttering those words. I have a roof over my head, a husband that loves me and a beautiful son. Some people don't even have that yet in my own selfish way I am angry that I am not healed and that I lay here in pain each and every day with these chronic migraines that we have yet to find a solution other than narcotics for. I seem to have a new issue every day and just when I think one is cleared up it seems as though it has created another for me to deal with.
Today I layed in bed in pain the sheets pulled over my head. I was talking myself out of going to Bible Study tonight. Then I quickly realized that was Satan trying to keep me from it. I pulled myself out of bed and got in the shower. I texted the two girls in my group that know about my situation because my bp has been extremely low the last few days. I wanted to make sure I was safe. As it turns out, they we both not going to be able to make it. I was so bummed. Once again, my illness had prevented me from doing something I wanted or rather needed to do. I knew I wouldn't be safe there alone. If something happened no one would understand or know what to do. Maybe I should just start wearing a sign. It is SO frustrating!
Tuesday, December 28, 2010
I'm not crazy...you're crazy!!!
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!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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
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