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!
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