It is so unbelievably frustrating dealing with The Social Security System trying to get on disability. Even with a lawyer, its a constant fight. I am tired of going to doctors appointments every week and filling out paper after paper. My life is one BIG disability mess. I hope in the end it all pays off...
literally.
My symptoms haven't been super fun this month. I seem to accumulated a couple more which really puts a damper doing anything. Half of the time they get so bad I know that I should make an ER trip, but I always just pray and try to ride them out. But I get sick of trying to just survive everyday. This illness has taken over my entire life now and I really dont know if I will ever get back to a normal me.
Its hard to hear people complain about how the have the flu or how bad their day was because they were late to work or trivial things in that nature when I would give ANYTHING at this point to have those minor problems. It is so true in the saying that you really dont know what you have until you loose it. I wish I would have appreciated my health more when I had it. I feel like I am in a kind of mourning with loosing it, much like if you were to loose someone. Its a weird feeling.
Well enough of the pity party! Lets see... Sydney is now 18 months and full of energy! No joke, as soon as she wakes up its go, go, go. She is also very stubborn and does not take no for an answer. I just cant believe how much she is talking and acting so much more like "real" human, instead of a baby. It makes me sad because I know that sooner than later she wont be my baby anymore. As hard as it is being a mommy when you are sick, she is the best thing that has ever happened to me. I know if it was not for her, I would not be able to get out of bed everyday, but she pushes me.
As much as I miss her being a baby, I am DEFINITELY not ready for another one just yet! God bless all those with two kids, because i know its hard work. Maybe in a couple years Lol
Wednesday, September 28, 2011
Thursday, May 5, 2011
So frustrated right now!
This stupid illness is kicking my butt. Seriously I sleep around 18 hours per day. It just plain sucks right now. My meds are not working as quick/well as I wanted them to and im miserable! I am SO tired of doctors appointments.
Like at my cardiologist appointment last week: He is a great cardiologist but his PA is DUMB! She is 25 years old, just starting out and came and saw me before my doctor came in. I told her my symptoms (she had a blank look on her face the entire time.. no brain?) Then when I tell her I applied for disablility, she asks me, " Wow your so young! Why would you want to be on disability this young in life? Dont you want to live a normal life?"
I wanted to punch her. No, I LOVE feeling like this everyday! I just have 6 specialists so I can waste my time and take a bizillion meds everyday just for the fun of it!
Finally my real doctor came in and told me that I have bradycardia. I was actually pretty surprised because I am used to having tachycardia. He said my pulse in my sleep goes into the 20's sometimes and that is why I am so low on energy most days. So tomorrow I find out when I get my pacemaker! I am happy because its not another damn med to shove down my throat and it might actually make me feel somewhat better.
However, on the downside, my meds side effects just suck. Between the extreme fatigue, dizziness, vertigo, migraines, passing out, and adrenaline surges, I am surprised I am holding up right now.
My weight loss has been really bad too. I just dont feel hungry anymore. I have to force feed myself everyday, so I just drink boost now LOL. So much easier!
Yesterday was a sad day.. Breck moved to California. My stress levels are through the roof right now and between balancing baby and this illness, I might just loose it. To make matters worse I STILL cant drive. Its been almost a year now that I have been behind the wheel and I was really hoping to be able to drive before he left.
Not a happy post but at least my daughter is happy! She is a ball of energy. I swear if I could bottle up a tenth of it I would be in heaven. She runs everywhere and screams at the top of her lungs (no, not crying, just screaming).
Like at my cardiologist appointment last week: He is a great cardiologist but his PA is DUMB! She is 25 years old, just starting out and came and saw me before my doctor came in. I told her my symptoms (she had a blank look on her face the entire time.. no brain?) Then when I tell her I applied for disablility, she asks me, " Wow your so young! Why would you want to be on disability this young in life? Dont you want to live a normal life?"
I wanted to punch her. No, I LOVE feeling like this everyday! I just have 6 specialists so I can waste my time and take a bizillion meds everyday just for the fun of it!
Finally my real doctor came in and told me that I have bradycardia. I was actually pretty surprised because I am used to having tachycardia. He said my pulse in my sleep goes into the 20's sometimes and that is why I am so low on energy most days. So tomorrow I find out when I get my pacemaker! I am happy because its not another damn med to shove down my throat and it might actually make me feel somewhat better.
However, on the downside, my meds side effects just suck. Between the extreme fatigue, dizziness, vertigo, migraines, passing out, and adrenaline surges, I am surprised I am holding up right now.
My weight loss has been really bad too. I just dont feel hungry anymore. I have to force feed myself everyday, so I just drink boost now LOL. So much easier!
Yesterday was a sad day.. Breck moved to California. My stress levels are through the roof right now and between balancing baby and this illness, I might just loose it. To make matters worse I STILL cant drive. Its been almost a year now that I have been behind the wheel and I was really hoping to be able to drive before he left.
Not a happy post but at least my daughter is happy! She is a ball of energy. I swear if I could bottle up a tenth of it I would be in heaven. She runs everywhere and screams at the top of her lungs (no, not crying, just screaming).
Saturday, April 16, 2011
Its just so hard sometimes!
I KNEW being a parent would be hard work, but I never thought I would have a chronic illness on top of it.
I usually dont talk about it too much since I came down with everything at the age of 18, but lately since I relapsed, it is getting harder to hide.
To start off I have what is called dysautonomia. Many ask what the hell is that, but simply put my autonomic nervous system is very badly messed up. That is the system that controls your heart rate, blood pressure, temperature, digestion, and pretty much anything else that your body automatically does for you. My subgroup of that is called Postural Orthostatic Tachycardia Sydnrome and I also have orthostatic intolerance. WOW huge name that absolutely no one has a clue about.
Basically everytime I am not lying on a flat surface, my heart rate can go up to 200 beats per minute and my blood pressure can drop as low as 50/20. To say at the least, living life is very hard for me. Gravity just SUCKS.
I am on TONS of medications, but there is no cure. I have 6 specialists now who NEVER work together, so my life is one, big doctor's appointment.
Also to makes matters even better, I found out I probably have what is called Mast Cell Activation Disorder. Basically, my Mast Cells are messed up. (awesome) At this point, nothing really phases me. I was told I had Pulmonary hypertension (life span is as little as 3 years) but i just really didnt care.
I did pretty well before my pregnancy, but after I went into my huge relapse. I can no longer drive, go shopping, walk more than a couple feet, or basically anything anymore.
THIS is why I dont go out. I know a lot of my friends think I ditch them or dont care, but that is far from the truth. I would LOVE to go to a movie. or grab lunch, but right now its just not possible.
I hope in the near future with some new meds ( oh did i mention I also have ME/CFS, which is chronic fatigue sydnrome?.. awesome...) that I will one day be a functioning human being. But until that happens, I am stuck in front of the tv praying that I have the tiniest amount of energy to take care of Sydney.
I usually dont talk about it too much since I came down with everything at the age of 18, but lately since I relapsed, it is getting harder to hide.
To start off I have what is called dysautonomia. Many ask what the hell is that, but simply put my autonomic nervous system is very badly messed up. That is the system that controls your heart rate, blood pressure, temperature, digestion, and pretty much anything else that your body automatically does for you. My subgroup of that is called Postural Orthostatic Tachycardia Sydnrome and I also have orthostatic intolerance. WOW huge name that absolutely no one has a clue about.
Basically everytime I am not lying on a flat surface, my heart rate can go up to 200 beats per minute and my blood pressure can drop as low as 50/20. To say at the least, living life is very hard for me. Gravity just SUCKS.
I am on TONS of medications, but there is no cure. I have 6 specialists now who NEVER work together, so my life is one, big doctor's appointment.
Also to makes matters even better, I found out I probably have what is called Mast Cell Activation Disorder. Basically, my Mast Cells are messed up. (awesome) At this point, nothing really phases me. I was told I had Pulmonary hypertension (life span is as little as 3 years) but i just really didnt care.
I did pretty well before my pregnancy, but after I went into my huge relapse. I can no longer drive, go shopping, walk more than a couple feet, or basically anything anymore.
THIS is why I dont go out. I know a lot of my friends think I ditch them or dont care, but that is far from the truth. I would LOVE to go to a movie. or grab lunch, but right now its just not possible.
I hope in the near future with some new meds ( oh did i mention I also have ME/CFS, which is chronic fatigue sydnrome?.. awesome...) that I will one day be a functioning human being. But until that happens, I am stuck in front of the tv praying that I have the tiniest amount of energy to take care of Sydney.
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