I got a call from my Cardiologist's nurse telling me to take off my 30 day heart monitor, and mail it back to them. It had only been 14 days, to the day. I ask her what they found out. She states, "I don't know, I was just to pass on the message to take it off and mail it back". Seriously? She has worked in Cardiology now for some time, does she not yet realize just how paranoid we get over every little change in our routines? Please!
"Could you please have him call me ASAP?"
"of course"
2 hours later, he calls, and bless his heart, talks to me for every second that I need him to, explaining every little detail that I need him to..over and over and over.
He confirms that I have Diabetic Neuropathy, he also tells me that I have "sinus tachycardia", which at that point I am thinking, "no big deal", because that just means having a fast heart beat, and we already knew that..right? Then he tells me he is sorry, that I have a "special" kind....yeah, of course I do, I always have a special kind. I have a special heart, remember. One that no one has seen before. Anyway...
I have Inappropriate Sinus Ttachycardia. (IST) Which means that when I get up to go to the bathroom, my heartbeat starts out at a normal beat, such as 68-72, then jumps to 160 before I even get to the bathroom. That explains why I am out of breath, tired, and feel like I am going to faint. My blood pressure remains at 90/50. Since I didn't do anything but sit around, go to bed, and go to the bathroom, we really have no idea what my heart rate will go up to during strenuous activity. During my bathroom trips, it was 160. (I have since counted to around 200, but losing count all the time because it's so fast, or irregular?)
I also have Dysautonomia, which I believe is about the same as the Diabetic Neuropathy. Anything that is Automatic in your body, breathing, heartbeat, digestion, body temp, circulation, etc...mine is a mess. It is no longer "auto- matic" I already take pills for my food to digest, wear a zipper hoodie all year round to take on and off quickly to regulate my body temperature, expect for the freezing hands and feet, there is nothing to be done there...sorry Charles!!, My puplis. My Eye Doctor couldn't figure out why it was so painful for me to go out into the sun..SOMETIMES. He kept testing me, and couldn't find anything wrong. Well...it seems that dilation of your pupils is another automatic thing, and sometimes one or both of mine will do it when they choose to. And when they choose not to, it's like when the Eye Doctor dilated your eyes in his office and you walk out in the sun without any sun glasses. OUCH! Breathing, there isn't anything I can do about that other than walk slowly. Being careful about doing activities after I eat. My heart rate is going to be regulated by changing my medication, again.
To give you an idea of the amount of medication I'll be taking just for my heart rate, my father just had his second open heart and he takes 10 mg of atenolol, I am now taking 100 mg of it to keep my pulse down. So far, it seems to be working better than what I was on. The main side effect I have noticed is that I am even more tired that I was before. Not pleasant. Not pleasant for others to have to deal with either.
As time goes on, there are other effect that aren't so pleasant that may pop up. My medication that I take to eat may not work any longer, so they are working on a stomach pacemaker to jolt the stomach to work. The intestines may stop working, or work TOO much, and the control of them and the bladder may be gone. Just think of everything that your body does that you don't tell it to....that is what will be effected.
How do you explain to people that a 48 yr. old women is exhausted, all the time. The savella I take is helping a great deal with the pain, so there goes that excuse to be in bed. I have no excuse but I am SO tired. By 4 p.m. I can barely keep my eyes open, by 4:30 p.m. I am asleep. By 10 p.m., I am awake and watching movies, or watching Charles sleep thinking how lucky I am that I have someone that is so supportive of me, and tries so very hard to understand what is going on. Thank God he goes into the Doctor's office with me, and asks questions so he can be just as informed as I am! How did I ever get so blessed??
I am praying that I will adjust to this medication, quickly, and will feel normal. Normal, now there is a word I don't usually use. I don't even know what it is, or what to use about myself to compare it to. It's been so many years now that "something" has been going on, I wouldn't know what normal is.
When I was pregnant with my daughter, a week before her birth I noticed my legs were huge! The next few days, I couldn't put on my shoes. The next few days, couldn't put them on even without the laces. I really didn't feel good, but I think it came up on me so slowly that I was tolerating it well enough, I didn't feel the need to go to the doctor. If I had woken up, and BAM, swollen everything and sick, it would have been a different story. The day I delivered her, I was at the hospital, walking into the ER and stopped to go into the restroom and looked into the mirror, and noticed my eyes were just slits, my face was so swollen. Why I hadn't noticed this before? Don't know. Guess maybe because I had a 5 1/2 yr old and a 10 month old..who knows, but it just hit me, I was very sick and better hurry!!
When they seen me, they all knew. My blood pressure was 220/190 and I was very sick. Padded the rails, turned off the lights for seizure precautions. Lucky for me, I have never had a labor longer than 4 hours, that being this one, and all went well. Both of us survived okay. A few weeks later, I realized how good I felt...Normal!! I also then realized just how SICK I felt as well. I had something to compare it to. It has been so long now that I don't have that feeling to compare it to now. THIS has become normal to me!
I am so sad that my sister Chris didn't have a Doctor that caught on to what she was going through. I now understand all her symptoms of not being able to breath, the horrible fatigue, her racing heartbeat, and the all over body pain. All the Doctors she went to see could not find anything wrong with her. Clear chest x ray, normal blood work..nothing. They would send her home making her feel like she was just lazy and paranoid that her cancer had come back. Nope. I don't think so. She had been diabetic about 10 years longer than I have, and on insulin alot longer as well.
Don't get me wrong. I am so happy that we finally have a name to part of what I have. There isn't a name to what is wrong with my heart. But I am sad that I couldn't get Chris to my Cardiologist sooner. We had talked on Weds night making our promise to go see my Cardiologist on the following Monday. She went into cardiac arrest the next night, and passed on that Monday. Did we wait too long? Could they have been able to do anything even if we had gone that night? I don't know...nobody does. I guess that is one answer I will never have.
Tuesday, May 11, 2010
Sunday, May 9, 2010
Happy Mother's Day
Today is Mother's day, and I hope that everyone takes advantage of taking their Mothers out, or getting her a card, or just calling her and telling her that you love her....but do something.
Today is a bitter sweet day for me. I Iost my mom when I was 12 years old, and I have missed her every single day since then. The sad part is, when you are 12 and your Mom leaves your life, you start to forget her as you get older. Oh, you see pictures of her, and you remember that is your mom, but you don't remember what she sounds like, what she smells like, her facial expressions that just a Mom makes...you know, "the look"...I have forgotten that now, and it makes me so sad.
I can never tell my Mom how sorry I am for the crazy things that a normal 12 year old does, and the things that a not so normal 12 year old does.
My Mom was sick, but I didn't realize just how sick she was, not that would forgive what I was doing. I had started smoking pot when I was 10 years old. I was writing my little school notes to my friends because I thought it was so cool that I was stoned after school, or that I was staying the night with my best friend and we were staying up late, getting stoned and watching Edgar Allen Poe movies on Friday night. My best friends Mom drank Vodka, so of course I was sneaking her vodka as well. This went on for a year before my Mom and Dad found one of my "Cool" notes, and decided to search my room.
I stood next to them, screaming how unfair it was, how they were invaiding my privacy, crying, putting on a great show...and the favorite.."it's only pot"! They found a dozen or so letters telling the stories of us camping in the backyard, sleep overs, etc....all about us getting high. My parents knew nothing about drugs, and knew even less about what to do with a 11 yr. old that used them. My poor Mother, sitting on the floor, letters covering her lap, crying, asking why her baby would use drugs. Why is it THAT memory one I can remember??
I did my plea that I would never do it again. They believed me. All was good for awhile. No, I didn't stop, I was just careful about putting things in writing....it never dawned on me my father would follow me, and watch me get high through the window of my best friends house. Horrified, humiliated, I took off running. Wow, you think your parent is old. This man could run, and run fast he did. I was barefoot, and we lived in the country, and I hit a stump in the dirt and broke my toes. I kept running but he caught me. He had me put on a nightgown, and he whipped me, and whipped me, until he couldn't whip me any longer. It's not the pain I remember...it's my Mom's crying in the next room and her begging my father to stop. That is what I remember. Did I stop smoking pot, and by now, doing other drugs and drinking more? Sad to admit, Nope!
My mother died a few months later. I was sitting on the bathroom sink blowdrying my hair, and in the mirror, I watched my father, both sets of grandparents walk in. Mom was supposed to come home. See, she went to the hospital about a week or so before. They couldn't tell she'd had a heart attack because like me, and my sisters, she didn't test positive for the blood work for having a heart attack...nothing came up positive, so they were taking to the floor where they put people who needed their gallbladders out...then something showed on ther EKG, and they realized something must be wrong, so they waited. She was 35! Then she died.
I could tell by looking at their faces she was gone. No one ever told me, they all just wanted to hug me, and then they all started crying, and crying, and talking like I wasn't there, about sending me to the Sisters and letting me go to school with the church.
I went to my sisters and held on to them, not wanting to be sent away to school. I told the middle one of us, that I never got to tell Mom I was sorry for what I had done, and maybe she had a heart attack because of me and what I had been doing. She kept telling me it wasn't me. My sisters promised me that they wouldn't leave me....they both have since gone.
So, the moral of this story is. Back then, no mother ever died of a heart attack at age 35. Life is so very short, and you never know when someone you love so dearly is going to be gone. Don't let some little fight that doesn't mean a thing come between you, because you could wake up the next morning, and not be able to say you are sorry! NEVER be able to say you are sorry. This is something that you carry with all your life, and wow, talk about the hardest thing to forgive yourself for.
Happy Mother's Day!! To the new Mothers, Old Mothers, GrandMothers...ALL Mothers. Celebrate them, Love them, Most of all, forgive them, because you will miss them when they are gone! So, when you go out to eat today, look across that table and count all your blessings that you CAN still look into her eyes and tell her....I LOVE YOU!
Today is a bitter sweet day for me. I Iost my mom when I was 12 years old, and I have missed her every single day since then. The sad part is, when you are 12 and your Mom leaves your life, you start to forget her as you get older. Oh, you see pictures of her, and you remember that is your mom, but you don't remember what she sounds like, what she smells like, her facial expressions that just a Mom makes...you know, "the look"...I have forgotten that now, and it makes me so sad.
I can never tell my Mom how sorry I am for the crazy things that a normal 12 year old does, and the things that a not so normal 12 year old does.
My Mom was sick, but I didn't realize just how sick she was, not that would forgive what I was doing. I had started smoking pot when I was 10 years old. I was writing my little school notes to my friends because I thought it was so cool that I was stoned after school, or that I was staying the night with my best friend and we were staying up late, getting stoned and watching Edgar Allen Poe movies on Friday night. My best friends Mom drank Vodka, so of course I was sneaking her vodka as well. This went on for a year before my Mom and Dad found one of my "Cool" notes, and decided to search my room.
I stood next to them, screaming how unfair it was, how they were invaiding my privacy, crying, putting on a great show...and the favorite.."it's only pot"! They found a dozen or so letters telling the stories of us camping in the backyard, sleep overs, etc....all about us getting high. My parents knew nothing about drugs, and knew even less about what to do with a 11 yr. old that used them. My poor Mother, sitting on the floor, letters covering her lap, crying, asking why her baby would use drugs. Why is it THAT memory one I can remember??
I did my plea that I would never do it again. They believed me. All was good for awhile. No, I didn't stop, I was just careful about putting things in writing....it never dawned on me my father would follow me, and watch me get high through the window of my best friends house. Horrified, humiliated, I took off running. Wow, you think your parent is old. This man could run, and run fast he did. I was barefoot, and we lived in the country, and I hit a stump in the dirt and broke my toes. I kept running but he caught me. He had me put on a nightgown, and he whipped me, and whipped me, until he couldn't whip me any longer. It's not the pain I remember...it's my Mom's crying in the next room and her begging my father to stop. That is what I remember. Did I stop smoking pot, and by now, doing other drugs and drinking more? Sad to admit, Nope!
My mother died a few months later. I was sitting on the bathroom sink blowdrying my hair, and in the mirror, I watched my father, both sets of grandparents walk in. Mom was supposed to come home. See, she went to the hospital about a week or so before. They couldn't tell she'd had a heart attack because like me, and my sisters, she didn't test positive for the blood work for having a heart attack...nothing came up positive, so they were taking to the floor where they put people who needed their gallbladders out...then something showed on ther EKG, and they realized something must be wrong, so they waited. She was 35! Then she died.
I could tell by looking at their faces she was gone. No one ever told me, they all just wanted to hug me, and then they all started crying, and crying, and talking like I wasn't there, about sending me to the Sisters and letting me go to school with the church.
I went to my sisters and held on to them, not wanting to be sent away to school. I told the middle one of us, that I never got to tell Mom I was sorry for what I had done, and maybe she had a heart attack because of me and what I had been doing. She kept telling me it wasn't me. My sisters promised me that they wouldn't leave me....they both have since gone.
So, the moral of this story is. Back then, no mother ever died of a heart attack at age 35. Life is so very short, and you never know when someone you love so dearly is going to be gone. Don't let some little fight that doesn't mean a thing come between you, because you could wake up the next morning, and not be able to say you are sorry! NEVER be able to say you are sorry. This is something that you carry with all your life, and wow, talk about the hardest thing to forgive yourself for.
Happy Mother's Day!! To the new Mothers, Old Mothers, GrandMothers...ALL Mothers. Celebrate them, Love them, Most of all, forgive them, because you will miss them when they are gone! So, when you go out to eat today, look across that table and count all your blessings that you CAN still look into her eyes and tell her....I LOVE YOU!
Subscribe to:
Posts (Atom)