Sunday, July 15, 2012
Today is Sunday, again or is it already? This is just me checking in. It has been a very hard week. Not just the with the pain and the exhaustion, but life in general. Seems things are happening in most areas of my life and I am feeling overwhelmed. What do they call it..a sense of inpending doom? I'm telling myself that I have Faith. I will be positive, and I am ever so grateful for everything that I have, and will have. Now, just hold onto the seat of my pants, and get there. So, tonight, I am going to take my medication, turn on my heated mattress pad, take my Kindle and go to bed. Tomorrow will be another blessed day.
Sunday, July 8, 2012
Well, it's been awhile, as usual. A lot has happened. Nothing as usual there either. Humira is now at every 12 days, with I believe is going to be okay. This last week, I was in the store, the day before my shot was due, and I had to hold onto the cart because the pain was terrible. It seemed to come on so quickly, and spread with every step I was taking. My legs, my hips, into my groin area..no place was off limits this time. No just physical, if that makes sense, it invades my entire life.
People with chronic illness not only have to deal with their pain, their loss, their depression, but they also have to deal with everyone elses as well. Never does it leave the back of your mind what a failure you are, how you have let others down, and you are forever looking for those comments of proof that always come, or the rolling of the eyes, whatever it is that you need to validate what you "know'' others are feeling about you. People may say one thing, but sooner or later, something different will slip out of their mouths; maybe they won't realize it, or maybe they do because they are just as sick and tired of the disease as we are. "Do whatever it is YOU need to do to take care of yourself"...Really? What if that means staying in bed for a few day, and doing NOTHING!!!!
You do know when you are sleeping, soundly, every night, I am not. I am walking the floors to try to stop the pain. I am taking hot baths just to make the pain in my legs tolerable enough to let the blankets touch them. I am vomiting so hard, again, that if I hadn't peed first, there would be another mess to clean up. And, more nights than not, I am still awake when your alarm goes off, and even on your days off, and I sleep past 8:00 a.m., I've only had about 3 hours sleep - - for the 4 night in a week.
Here come the anger. We never asked to be sick. We never asked to be poked, pinched, put into skinny tubed with horribly loud noises for hours, and then told there was nothing wrong with us - - for years on end. To be in so much pain that we cannot walk, lost our dreams to be Nurses, Doctors, Lawyers, Fantastic Mothers, Fathers, Lovers and Best Friends. We have lost every friend that we've had, our entire social network, social life, because we are so unreliable. One day we are feeling great, and the next day we cannot function. We lost our Houses, Cars, and Businesses because we couldn't afford the Medical bills that mounted over these years until finally, finally someone stopped rolling their eyes and understood what was wrong with us, and helped us, but, by that time, this disease has progressed so much our bones have fused together and caused so much other damage in our bodies, all we can pray for is it slows it down and eases the pain. But, the saddest part is, there is so much unsaid damage to our Relationships now, that the majority of us don't make it. Not just because of "this'' disease, but because of any Chronic Disease, or a Death of a child, or severe trauma - - Marriage / Relationships are put to a test, a test that they usually don't win.
These little comments can either push us down even farther to keep us from fighting to get better, keep us from fighting to maintain, or stop us from fighting at all. We quit! OR, we can start fighting all over again, for ourselves. Not just from the disease prospective, but from the person inside of us that has been beaten down for so many years that has wanted to get out, but has just been too tired, in too much pain, and has had to pick their battles. Maybe one more little roll of the eyes, or comment about sleeping in too late could be the push that pushes us too far.
I, personally, have so much to be grateful for though out all of this journey. During it, there has been an Open Heart Surgery, 2 stents. Diabetes w/ Retinopathy w/ so many lazer surgeries, and 2 cataracts removed. Macular Degeneration with injection of Avastin directly into my eye to try to stop the scar tissue from building up. Because of all this, I can't see very well. I see double, with wavy lines caused by the scar tissue. I have Kidney's that have low operated levels because I choose to take way more Advil then I should have due to all the pain I was in. Now, I cannot take anything like Advil again. I have a frozen Left Shoulder, and a Right one that is starting to have the same problems. I was finally diagnosed with Ankylosing Spondylitis...fusing of the bones, so my hips / back are already fused, which I take injections of Humira for every 12 days for the rest of my life. It is "like" chemo, it causes my immune system to go to nothing, so I can't be around sick people, or I end up sick and in the hospital. I don't have anything to fight it off with.
I have Gastroparesis - - my Stomach doesn't digest food any more. I was to go to Barnes Hospital in St. Louis, but the Dr. left, and now it's in November. I vomit a lot. I am sick to my stomach a lot.
We got into an Motorcycle accident last November 2011, and I was stuck by an orange construction cone at 55 MPH, and the nerves in my knee were cut, and won't heal, so they are "sparking" all the time, with causes pain, all the time! I wear a pain numbing patch 12 hours on, and 12 hours off. Just a breeze going over the scar causes pain. There is other things, but these are the main ones that I live with....that WE deal with.
This has been a rough few months. I'm taking it one step at a time, but I do know, I am going to work on me, and what I need to do for me, and if that is to sleep until 10:00 a.m., then I will, and I won't feel guilty about it - - ever, ever again.
People with chronic illness not only have to deal with their pain, their loss, their depression, but they also have to deal with everyone elses as well. Never does it leave the back of your mind what a failure you are, how you have let others down, and you are forever looking for those comments of proof that always come, or the rolling of the eyes, whatever it is that you need to validate what you "know'' others are feeling about you. People may say one thing, but sooner or later, something different will slip out of their mouths; maybe they won't realize it, or maybe they do because they are just as sick and tired of the disease as we are. "Do whatever it is YOU need to do to take care of yourself"...Really? What if that means staying in bed for a few day, and doing NOTHING!!!!
You do know when you are sleeping, soundly, every night, I am not. I am walking the floors to try to stop the pain. I am taking hot baths just to make the pain in my legs tolerable enough to let the blankets touch them. I am vomiting so hard, again, that if I hadn't peed first, there would be another mess to clean up. And, more nights than not, I am still awake when your alarm goes off, and even on your days off, and I sleep past 8:00 a.m., I've only had about 3 hours sleep - - for the 4 night in a week.
Here come the anger. We never asked to be sick. We never asked to be poked, pinched, put into skinny tubed with horribly loud noises for hours, and then told there was nothing wrong with us - - for years on end. To be in so much pain that we cannot walk, lost our dreams to be Nurses, Doctors, Lawyers, Fantastic Mothers, Fathers, Lovers and Best Friends. We have lost every friend that we've had, our entire social network, social life, because we are so unreliable. One day we are feeling great, and the next day we cannot function. We lost our Houses, Cars, and Businesses because we couldn't afford the Medical bills that mounted over these years until finally, finally someone stopped rolling their eyes and understood what was wrong with us, and helped us, but, by that time, this disease has progressed so much our bones have fused together and caused so much other damage in our bodies, all we can pray for is it slows it down and eases the pain. But, the saddest part is, there is so much unsaid damage to our Relationships now, that the majority of us don't make it. Not just because of "this'' disease, but because of any Chronic Disease, or a Death of a child, or severe trauma - - Marriage / Relationships are put to a test, a test that they usually don't win.
These little comments can either push us down even farther to keep us from fighting to get better, keep us from fighting to maintain, or stop us from fighting at all. We quit! OR, we can start fighting all over again, for ourselves. Not just from the disease prospective, but from the person inside of us that has been beaten down for so many years that has wanted to get out, but has just been too tired, in too much pain, and has had to pick their battles. Maybe one more little roll of the eyes, or comment about sleeping in too late could be the push that pushes us too far.
I, personally, have so much to be grateful for though out all of this journey. During it, there has been an Open Heart Surgery, 2 stents. Diabetes w/ Retinopathy w/ so many lazer surgeries, and 2 cataracts removed. Macular Degeneration with injection of Avastin directly into my eye to try to stop the scar tissue from building up. Because of all this, I can't see very well. I see double, with wavy lines caused by the scar tissue. I have Kidney's that have low operated levels because I choose to take way more Advil then I should have due to all the pain I was in. Now, I cannot take anything like Advil again. I have a frozen Left Shoulder, and a Right one that is starting to have the same problems. I was finally diagnosed with Ankylosing Spondylitis...fusing of the bones, so my hips / back are already fused, which I take injections of Humira for every 12 days for the rest of my life. It is "like" chemo, it causes my immune system to go to nothing, so I can't be around sick people, or I end up sick and in the hospital. I don't have anything to fight it off with.
I have Gastroparesis - - my Stomach doesn't digest food any more. I was to go to Barnes Hospital in St. Louis, but the Dr. left, and now it's in November. I vomit a lot. I am sick to my stomach a lot.
We got into an Motorcycle accident last November 2011, and I was stuck by an orange construction cone at 55 MPH, and the nerves in my knee were cut, and won't heal, so they are "sparking" all the time, with causes pain, all the time! I wear a pain numbing patch 12 hours on, and 12 hours off. Just a breeze going over the scar causes pain. There is other things, but these are the main ones that I live with....that WE deal with.
This has been a rough few months. I'm taking it one step at a time, but I do know, I am going to work on me, and what I need to do for me, and if that is to sleep until 10:00 a.m., then I will, and I won't feel guilty about it - - ever, ever again.
Wednesday, May 16, 2012
Let It ALL Out.
Do you ever just feel like telling people exactly how you feel? Word for word? No sugar coating it, just laying it out, no feelings spared.
I don't know what is going on with me. I feel like shit. Look like shit. I am due for my next shot in the morning, and I have to say, I am looking forward to it. I am already exhausted, and so sore, that I can't imagine what it will do to me, but surely I can't feel worse that this. (oh, oh...testing Fate?)
I went to the Dr. this week, and she was trying to explain how to control my blood sugars, and I honestly couldn't understand her math, and where she was getting her numbers from. When I asked her, again, she friggin ROLLED HER EYES AT ME. Is this where our professionalism is going? They get pissed because we don't follow their rules...don't keep our blood sugars within normal range, and the biggest..."why don't you ask questions?" Hmmmm, why are you fucking rolling your eyes at me when I do?" OH, why didn't I say that when I was there? Yes, I am going to start saying what comes to my mind, the second it does from now on!! I walked out, not making a follow up appointment; I was too tired and upset.
Coming home, I got the mail. My OB-GYN had left the building!! At least she only moved to a new building at a closer one to where I go to anywhere. Not so bad. It's not like I go to her anyway. I dropped all my stuff and tried to understand what my Diabetic doctor was telling me, and the phone rang. My counselor of many years...QUIT! Well, actually, I quit. She went part time, evenings, so I would have to drive in the dark, on a different day, and I just said...good bye, but did tell her the next time she did this, it would be best not to do it over the phone, this is kind of traumatic ya know! She set up a "good-bye" appointment, but I am already feeling like I am going to cancel it. I hate good-byes.
So, the Humira. I really think it is working, but for only a week. My second week is horrible. I feel drained, pain - everywhere. Out of breath. Almost like I have the flu. I look forward to the next shot and want to do it early, but I know I can't. I see my Doctor at the end of this month, and I really think we should discuss increasing the dose, if that is possible...or doing it every week and see if I feel better that way. I haven't seen anyone else taking it once per week, so I am not sure what the side effects would be like.
Side effects...I have noticed my hair if falling out by hand fulls in the shower. I am not sure if this is from the Humira, or Summer. I am trying not to wash my hair so often, to see if that helps. My eyelashes seem thinner. Maybe this is my imagination? Could be, I was afraid this would happen, so I could just be looking for it too.
I am very glad at this point that I am on Humira. I haven't noticed anything horrible. A little sick to my stomach but I also have Gastroparesis, so it's hard to tell which is which. The fatigue is the worst of all I would say. The pain. The pain seems to calm down around the 4th day, or so. I take my injection on Thursday. Monday, I seem to feel better all over, even the fatigue isn't much to complain about. But, by the second week..on Monday...I am in so much pain again, and the fatigue is so overwhelming, I don't want to get out of bed. I don't want to take a shower. (gross, I know) I stand up and my heart rate is way over 115 BPM, but my B/P is low around 90/50 so I am dizzy and sick to my stomach most of the time..and counting the days to inject again.
So, right now, I am pleased with the beginning of this road back to recovery. Now, what do I do with it? It's been a long time since I have locked myself up in this house. I am not sure what to do with myself outside of it. I have a friend that works at the rehab dept. here in town that wants to open up a case on me, to see what could be done. She hasn't a clue what all is wrong with me. Maybe I should tell her. Maybe I should list all the things wrong...that could take awhile...I'll start that next time.
I don't know what is going on with me. I feel like shit. Look like shit. I am due for my next shot in the morning, and I have to say, I am looking forward to it. I am already exhausted, and so sore, that I can't imagine what it will do to me, but surely I can't feel worse that this. (oh, oh...testing Fate?)
I went to the Dr. this week, and she was trying to explain how to control my blood sugars, and I honestly couldn't understand her math, and where she was getting her numbers from. When I asked her, again, she friggin ROLLED HER EYES AT ME. Is this where our professionalism is going? They get pissed because we don't follow their rules...don't keep our blood sugars within normal range, and the biggest..."why don't you ask questions?" Hmmmm, why are you fucking rolling your eyes at me when I do?" OH, why didn't I say that when I was there? Yes, I am going to start saying what comes to my mind, the second it does from now on!! I walked out, not making a follow up appointment; I was too tired and upset.
Coming home, I got the mail. My OB-GYN had left the building!! At least she only moved to a new building at a closer one to where I go to anywhere. Not so bad. It's not like I go to her anyway. I dropped all my stuff and tried to understand what my Diabetic doctor was telling me, and the phone rang. My counselor of many years...QUIT! Well, actually, I quit. She went part time, evenings, so I would have to drive in the dark, on a different day, and I just said...good bye, but did tell her the next time she did this, it would be best not to do it over the phone, this is kind of traumatic ya know! She set up a "good-bye" appointment, but I am already feeling like I am going to cancel it. I hate good-byes.
So, the Humira. I really think it is working, but for only a week. My second week is horrible. I feel drained, pain - everywhere. Out of breath. Almost like I have the flu. I look forward to the next shot and want to do it early, but I know I can't. I see my Doctor at the end of this month, and I really think we should discuss increasing the dose, if that is possible...or doing it every week and see if I feel better that way. I haven't seen anyone else taking it once per week, so I am not sure what the side effects would be like.
Side effects...I have noticed my hair if falling out by hand fulls in the shower. I am not sure if this is from the Humira, or Summer. I am trying not to wash my hair so often, to see if that helps. My eyelashes seem thinner. Maybe this is my imagination? Could be, I was afraid this would happen, so I could just be looking for it too.
I am very glad at this point that I am on Humira. I haven't noticed anything horrible. A little sick to my stomach but I also have Gastroparesis, so it's hard to tell which is which. The fatigue is the worst of all I would say. The pain. The pain seems to calm down around the 4th day, or so. I take my injection on Thursday. Monday, I seem to feel better all over, even the fatigue isn't much to complain about. But, by the second week..on Monday...I am in so much pain again, and the fatigue is so overwhelming, I don't want to get out of bed. I don't want to take a shower. (gross, I know) I stand up and my heart rate is way over 115 BPM, but my B/P is low around 90/50 so I am dizzy and sick to my stomach most of the time..and counting the days to inject again.
So, right now, I am pleased with the beginning of this road back to recovery. Now, what do I do with it? It's been a long time since I have locked myself up in this house. I am not sure what to do with myself outside of it. I have a friend that works at the rehab dept. here in town that wants to open up a case on me, to see what could be done. She hasn't a clue what all is wrong with me. Maybe I should tell her. Maybe I should list all the things wrong...that could take awhile...I'll start that next time.
Wednesday, May 2, 2012
A Day in Bed
Today, is bed day. I spent yesterday cleaning my room, packing winter clothes, cleaning out all my drawers and my closet. My plan was that I knew I would be in so much pain, that I would take my Humira injection in the morning, I would just rest / sleep the day away. What I totally screwed up was....the days! Today is Weds., and I do my injection on Thursday. But, I took my injection today anyway. The pain was so bad, nothing was touching it. I didn't sleep much last night, so I took the injection at 5 a.m. this morning. It's been 4 hours, and I've eaten so much soup, I feel sick now, but that is okay.
I thought I would take today to catch up on what all is actually wrong with me. There is a list!
Starting with my heart. My Mom died when I was 12, and she was 35 of a heart attack. Nothing that was expected, but we found out later that it was hereditary. Her autopsy showed her entire circulatory system was just like an 80 yr. old women. At that time, her Doctor assured us that none of us would get this, this was something very rare. Her and Dad had 3 daughters. Chris, the oldest, Cathy the middle sister, and me. Cathy started having chest pain in her 20's, but no one believed her. One of the hospitals actually gave me maloxx and told me to take her home!! Later that evening, she returned to the ER and was in so much pain, but still the Lab Tests were showing nothing...every heart attack test was negative...but they knew something was wrong, so they did a Heart Cath on her and found that she had been having heart attacks, with a lot of damage, and she needed a Bi-pass. She was flown to Chicago to have it done. By time she got there, the Lab Tests started coming up POSITIVE. (almost too late) 10 years later, she passed away from a heart attack. This was in 1997, and she was 36.
About that time, I started having chest pain, and made my first trip to the ER with my oldest sister. They thought it was my gallbladder, or a spasm in my throat. My sister and I kept staring at each other..not knowing what to do, or saying....yet, knowing in our guts what was to come.
January of 2003 Charles and I were moving, and I noticed my heart was skipping, a lot, and I was exhausted. I was already off work because of what they called, "Fibromyalgia". I was scared to tell any one, it would make it real. By February, I had an appointment with my Doctor and told him I was short of breath, could feel my heart beat in my neck, and my chest hurt. He rushed me into another room, and at the same time of pulling off my shirt, and connecting me to a EKG, they were all assuring me that nothing was wrong. EKG - - Normal.
Next, I was to drive a few blocks to the Lab that he used. Labs - - Normal. I know this was supposed to make me feel better, but with my Mom and my Sister always being Normal, it didn't! He then decided I should see a Cardiologist for a stress test, and luck would have it, they had an opening in 2 days. Charles and I drove back over and guess what...I passed that as well. Well, I had ONE little spot that could be mistaken for women with large breasts. SO, he was going to let US decide what we wanted to do. Our choices were...1. We could wait until I had more symptoms. 2. Let him refer me to another cardiologist in Springfield or Mayo Clinic and they would do a Heart Cath. or 3. We could do another type of Stress Test. It was our decision! It took us about 5 minutes to decide....We were going to Springfield for a Heart Cath. We explained to him about my Mom and Sister and how Cathy passed the Stress Test as well, and I didn't want to take any chances, and as horrible as I felt, something was wrong.
We had to wait until the end of February 2003 for the Heart Cath. We met Dr. Karpen, who did not smile, or talk to us, other than to say he felt there was NO reason for us to be here because I passed all the tests, and the little "blip" on the stress test is probably there because I had big boobs! I looked at Charles, and said "Yeah Charles, my boobs were good for something huh? .... no smile, no remark..nothing from "Dr. Smiley" (what we called him for awhile)
I decided to stay awake for the Heart Cath because 1. I wanted to see what it was like, and 2. I wanted to know what was wrong with me before my family, and I would decide what they should know first.
During the cath, everyone talk to each other, but not to me, I just kept watching the monitors, until Dr. Karpen said, "SHIT". He moved from the table, and said, "yes, you have the same thing that your Mom and Sister Died from."...and started to walk from the room. I was crying and said, "am I going to die", he wouldn't answer me. I tried to get up from the table to go after him, but all the techs and nurses held me down, and I started fighting them....yelling after him..."AM I GOING TO DIE?" He said, "I don't know if I can help you, we'll talk."...and left....with me crying, and about 6 people holding me down. I still had the sheath inside my artery where they cath went into my heart, so I couldn't move. They kept telling me to hold my leg still or I would bleed...I kept crying, telling them, "it doesn't matter, didn't you hear him?"
He called into the room, telling the nurse to give me something to calm me down, and the next them I remember I was fighting sleep. I didn't want to go to sleep because I wanted to be there when he told Charles I was going Die.
My family came in, and they were all crying. They knew. He told us that I needed a Power of Attorney, and a Living Will, as I wouldn't make it through the year, and he didn't want me to leave, as I needed an Open Heart. It was all too much!! We left. I got all my paper work done. But I didn't want the surgery if I was going to die anyway.
April 2003, I couldn't breath. I couldn't walk to the bathroom without holding onto the walls. I knew I was dying. I called Dr. Karpen's office, and he was on vacation, so I talked to his nurse. She told me I needed to get there ASAP. I had my open heart April 3, 2003.
One year later, it started all over again, and thank God my doctors listen to me, and not the lab's, and another heart cath showed that out of the 4 bi passes, only 2 remained, and they got a stent in one of them. A year and a half later....another stent.
Then my last sister died of a heart attack! She was 47 yr. old, leaving her son and 2 grandchildren behind...and ME.
A lot of things happened in between, but this is the short version.
During all of this, I was fighting so many doctors about all the pain I had in my hips and back. Finally, one told me it was SI joints that were inflamed, and when he did the injections under a flourascope, he them told me I had Ankloysing Spondylitis. Sadly, it took about 5 more years to get it diagnosed and treated.
There has been depression, panic attacks where I didn't want to leave my house, Diabetes with up to 7 injections per day, and Gastroparesis..and all the other things that go with it. (leave that to another day)
So, now I am on Humira, thanking God. May 30, I'll see the Dr. to see about doing a shot per week, instead of every other week. I am going to go to Barnes Hospital in July for the Gastroparesis, and see about a pacemaker or Gastric sleeve. September, I'll go back to Dr. Karpen to see how my heart is doing, and if I need to do a heart Cath to check if this out of breathless-ness has anything to do with my heart, or now.
So, that kind of catches ya up on the "old" medical issues. I'll catch you up on some newer some the next time. Today, I've got to rest. I am exhausted. I'm ready to fall asleep trying. Please forgiven me for any typos.....Oh yeah...diabetic retinopaty is another, and my Doctor quite!
Hope you all are having a great day.....maybe more later, after my nap.... :)
I thought I would take today to catch up on what all is actually wrong with me. There is a list!
Starting with my heart. My Mom died when I was 12, and she was 35 of a heart attack. Nothing that was expected, but we found out later that it was hereditary. Her autopsy showed her entire circulatory system was just like an 80 yr. old women. At that time, her Doctor assured us that none of us would get this, this was something very rare. Her and Dad had 3 daughters. Chris, the oldest, Cathy the middle sister, and me. Cathy started having chest pain in her 20's, but no one believed her. One of the hospitals actually gave me maloxx and told me to take her home!! Later that evening, she returned to the ER and was in so much pain, but still the Lab Tests were showing nothing...every heart attack test was negative...but they knew something was wrong, so they did a Heart Cath on her and found that she had been having heart attacks, with a lot of damage, and she needed a Bi-pass. She was flown to Chicago to have it done. By time she got there, the Lab Tests started coming up POSITIVE. (almost too late) 10 years later, she passed away from a heart attack. This was in 1997, and she was 36.
About that time, I started having chest pain, and made my first trip to the ER with my oldest sister. They thought it was my gallbladder, or a spasm in my throat. My sister and I kept staring at each other..not knowing what to do, or saying....yet, knowing in our guts what was to come.
January of 2003 Charles and I were moving, and I noticed my heart was skipping, a lot, and I was exhausted. I was already off work because of what they called, "Fibromyalgia". I was scared to tell any one, it would make it real. By February, I had an appointment with my Doctor and told him I was short of breath, could feel my heart beat in my neck, and my chest hurt. He rushed me into another room, and at the same time of pulling off my shirt, and connecting me to a EKG, they were all assuring me that nothing was wrong. EKG - - Normal.
Next, I was to drive a few blocks to the Lab that he used. Labs - - Normal. I know this was supposed to make me feel better, but with my Mom and my Sister always being Normal, it didn't! He then decided I should see a Cardiologist for a stress test, and luck would have it, they had an opening in 2 days. Charles and I drove back over and guess what...I passed that as well. Well, I had ONE little spot that could be mistaken for women with large breasts. SO, he was going to let US decide what we wanted to do. Our choices were...1. We could wait until I had more symptoms. 2. Let him refer me to another cardiologist in Springfield or Mayo Clinic and they would do a Heart Cath. or 3. We could do another type of Stress Test. It was our decision! It took us about 5 minutes to decide....We were going to Springfield for a Heart Cath. We explained to him about my Mom and Sister and how Cathy passed the Stress Test as well, and I didn't want to take any chances, and as horrible as I felt, something was wrong.
We had to wait until the end of February 2003 for the Heart Cath. We met Dr. Karpen, who did not smile, or talk to us, other than to say he felt there was NO reason for us to be here because I passed all the tests, and the little "blip" on the stress test is probably there because I had big boobs! I looked at Charles, and said "Yeah Charles, my boobs were good for something huh? .... no smile, no remark..nothing from "Dr. Smiley" (what we called him for awhile)
I decided to stay awake for the Heart Cath because 1. I wanted to see what it was like, and 2. I wanted to know what was wrong with me before my family, and I would decide what they should know first.
During the cath, everyone talk to each other, but not to me, I just kept watching the monitors, until Dr. Karpen said, "SHIT". He moved from the table, and said, "yes, you have the same thing that your Mom and Sister Died from."...and started to walk from the room. I was crying and said, "am I going to die", he wouldn't answer me. I tried to get up from the table to go after him, but all the techs and nurses held me down, and I started fighting them....yelling after him..."AM I GOING TO DIE?" He said, "I don't know if I can help you, we'll talk."...and left....with me crying, and about 6 people holding me down. I still had the sheath inside my artery where they cath went into my heart, so I couldn't move. They kept telling me to hold my leg still or I would bleed...I kept crying, telling them, "it doesn't matter, didn't you hear him?"
He called into the room, telling the nurse to give me something to calm me down, and the next them I remember I was fighting sleep. I didn't want to go to sleep because I wanted to be there when he told Charles I was going Die.
My family came in, and they were all crying. They knew. He told us that I needed a Power of Attorney, and a Living Will, as I wouldn't make it through the year, and he didn't want me to leave, as I needed an Open Heart. It was all too much!! We left. I got all my paper work done. But I didn't want the surgery if I was going to die anyway.
April 2003, I couldn't breath. I couldn't walk to the bathroom without holding onto the walls. I knew I was dying. I called Dr. Karpen's office, and he was on vacation, so I talked to his nurse. She told me I needed to get there ASAP. I had my open heart April 3, 2003.
One year later, it started all over again, and thank God my doctors listen to me, and not the lab's, and another heart cath showed that out of the 4 bi passes, only 2 remained, and they got a stent in one of them. A year and a half later....another stent.
Then my last sister died of a heart attack! She was 47 yr. old, leaving her son and 2 grandchildren behind...and ME.
A lot of things happened in between, but this is the short version.
During all of this, I was fighting so many doctors about all the pain I had in my hips and back. Finally, one told me it was SI joints that were inflamed, and when he did the injections under a flourascope, he them told me I had Ankloysing Spondylitis. Sadly, it took about 5 more years to get it diagnosed and treated.
There has been depression, panic attacks where I didn't want to leave my house, Diabetes with up to 7 injections per day, and Gastroparesis..and all the other things that go with it. (leave that to another day)
So, now I am on Humira, thanking God. May 30, I'll see the Dr. to see about doing a shot per week, instead of every other week. I am going to go to Barnes Hospital in July for the Gastroparesis, and see about a pacemaker or Gastric sleeve. September, I'll go back to Dr. Karpen to see how my heart is doing, and if I need to do a heart Cath to check if this out of breathless-ness has anything to do with my heart, or now.
So, that kind of catches ya up on the "old" medical issues. I'll catch you up on some newer some the next time. Today, I've got to rest. I am exhausted. I'm ready to fall asleep trying. Please forgiven me for any typos.....Oh yeah...diabetic retinopaty is another, and my Doctor quite!
Hope you all are having a great day.....maybe more later, after my nap.... :)
Wednesday, April 25, 2012
Humira VS Heart? That is the question for today.
I am so exhausted. I can't breath. I have no desire to get up and do anything, not to shower, not to clean..not to eat....nothing.
I did the dishes. I ran the sweeper, and I couldn't breath through the entire process, just cry.
I hurt, yep, you guessed it, all over. But, my joints hurts terribly. My toes hurt, all the way up to my neck. My eyes are burning, I am seeing double..that is when I can keep my eyes open. It's a struggle. I am so tired. Tired of hurting. Tired in general....just Tired.
I just want to go to bed. The sun isn't out, otherwise I would say I want to go outside, get into my lawn chair, with a blanket, and sleep. Just to be left alone, for hours, maybe .. longer.
I can't stop crying. What is wrong with me????
Is the Humira not working? Is it the weather, this storm that we are supposed to be getting? Did my walk of 2 hours through Walmart put me back .. days, months?? Is it the junk food I have been snacking on? (hmmm, here comes the No Starch AS Diet I've been reading about??) Is walking Casper for 30 mins a day too much? (really??!!) WHAT?? What happened?
I've been sleeping better than I've slept my entire life, so that doesn't seem to be the problem. I haven't done anything around the house, like lifting things, more cleaning ..ha ha ha...so no problem there. (hint hint...clean that bedroom..my side)
Here goes the Guilt..more Guilt! I have 4 weeks to go on a camping trip. 4 weeks to feel better, get into better shape, be ready to ride 8 straight hours, put up the camp site, and feel like doing something. Of course, this is after NOT riding a motorcycle all winter, starting a new medication that is already making me sick after each shot, going down south where the temp is hotter and more humid....Nope, not setting myself up for failure here. Well, I didn't think so, until after I just read this on paper. See, that is why they always tell you to write things down...always looks a little different when you do. :) Makes you see things .. differently. That's okay, I'm still going. I have 4 weeks!
I want to STOP being sick. I want to STOP being in PAIN. I want people to stop looking at me differently. I want to be NORMAL, whatever that is any more.
I just said the other day, I want a job! Yep, a real job. Hmm, now looking at all the options, WHO would hire me???
I miss my old Clients. I miss the Men's Shelter. I miss Prairie Center. I miss my life.
Question 2: Is this my heart? Is this why I can't breath whenever I do something? I'm due back to my Cardiologist in September. I've been taking my blood pressure, and a few times at the Doctor and it does seem to be higher. The Doctor's office say it's because I am nervous, but I am not nervous here. They don't understand how important it is that my blood pressure stay very low, not even normal. My pulse stay low. When I go and it's 110, and I have been sitting in the waiting room for 30 mins....Houston, we have a problem. If I increase my pulse medication any more, I won't function. Charles might as well put me in a chair, and go have a life of his own.
Which goes on to more Guilt.....how much Guilt can one person have inside their body, before they just explode? What happened when they do explode?? Is there a Doctor for this too?
Is there a Doctor that can remove this Pity Pot I am siting on?
I am so exhausted. I can't breath. I have no desire to get up and do anything, not to shower, not to clean..not to eat....nothing.
I did the dishes. I ran the sweeper, and I couldn't breath through the entire process, just cry.
I hurt, yep, you guessed it, all over. But, my joints hurts terribly. My toes hurt, all the way up to my neck. My eyes are burning, I am seeing double..that is when I can keep my eyes open. It's a struggle. I am so tired. Tired of hurting. Tired in general....just Tired.
I just want to go to bed. The sun isn't out, otherwise I would say I want to go outside, get into my lawn chair, with a blanket, and sleep. Just to be left alone, for hours, maybe .. longer.
I can't stop crying. What is wrong with me????
Is the Humira not working? Is it the weather, this storm that we are supposed to be getting? Did my walk of 2 hours through Walmart put me back .. days, months?? Is it the junk food I have been snacking on? (hmmm, here comes the No Starch AS Diet I've been reading about??) Is walking Casper for 30 mins a day too much? (really??!!) WHAT?? What happened?
I've been sleeping better than I've slept my entire life, so that doesn't seem to be the problem. I haven't done anything around the house, like lifting things, more cleaning ..ha ha ha...so no problem there. (hint hint...clean that bedroom..my side)
Here goes the Guilt..more Guilt! I have 4 weeks to go on a camping trip. 4 weeks to feel better, get into better shape, be ready to ride 8 straight hours, put up the camp site, and feel like doing something. Of course, this is after NOT riding a motorcycle all winter, starting a new medication that is already making me sick after each shot, going down south where the temp is hotter and more humid....Nope, not setting myself up for failure here. Well, I didn't think so, until after I just read this on paper. See, that is why they always tell you to write things down...always looks a little different when you do. :) Makes you see things .. differently. That's okay, I'm still going. I have 4 weeks!
I want to STOP being sick. I want to STOP being in PAIN. I want people to stop looking at me differently. I want to be NORMAL, whatever that is any more.
I just said the other day, I want a job! Yep, a real job. Hmm, now looking at all the options, WHO would hire me???
I miss my old Clients. I miss the Men's Shelter. I miss Prairie Center. I miss my life.
Question 2: Is this my heart? Is this why I can't breath whenever I do something? I'm due back to my Cardiologist in September. I've been taking my blood pressure, and a few times at the Doctor and it does seem to be higher. The Doctor's office say it's because I am nervous, but I am not nervous here. They don't understand how important it is that my blood pressure stay very low, not even normal. My pulse stay low. When I go and it's 110, and I have been sitting in the waiting room for 30 mins....Houston, we have a problem. If I increase my pulse medication any more, I won't function. Charles might as well put me in a chair, and go have a life of his own.
Which goes on to more Guilt.....how much Guilt can one person have inside their body, before they just explode? What happened when they do explode?? Is there a Doctor for this too?
Is there a Doctor that can remove this Pity Pot I am siting on?
Friday, April 20, 2012
Friday, April 20, 2012.
Today, I am so overwhelmed, I don't know where to begin. I took my 4th Humira shot yesterday, and something happened within hours. My vision started to change, I was seeing double, and everything was bright..so bright to the point of being painful. My body was electrified...how is that for a word? I can't think of a word better to describe what I was feeling. Not static. But, as if I had put my finger, just the tip, being a little wet, into the electrical outlet for a second. I have felt like this for the last 24 hrs. Not as intense today, but it's there. Kind of in the background. My face almost feels numb, like a night of too much partying. Hmmm, could you explain that one to your doctor. Ha ha, of course, how else did he or she make it through med school and hours of residency? THEY know.
I had gone to the Orthopedic Doctor the day before, and they asked if I had been sick because of the temp I had. VERY low. He explained to me, since I was on Humira, I was to take my temp in the morning BEFORE my injection and if it was over normal, NOT to take the injection and call my Doctor. I did take my temp and it was 97.9, so I took the injection. Since then, I have taken it and it's been around 96.3, and 97. I am wondering if it is broken. I have been coughing, a lot, and a little out of breath. I am praying my thermometer isn't broken, and I am a little sick! Tomorrow, I plan on buying a new one to be sure! The side effects of Humira are...frightening if you are sick!
My pain level seems to be decreasing with each injection, which I am SO very grateful for, and then increasing when the next injection comes due. Monday on the second week, the pain comes back, increasing each day until my shot is due on Thursday. The pain in my SI joints are calming down, but the strange thing is I can feel more pain in my shoulders and other joints now, like my hands. It seems like I can't use them as well any more. I am wondering if it is because I am using them more now. I do know, for once in my life maybe, I am getting more sleep. Charles turned off the TV at around 11:30 p.m. last night because I couldn't stay awake, and I didn't get out of bed until 2:30 a.m. : ) I woke up a few times before then, but I actually stayed in bed!! From 2:30 a.m. on, I was awake on and off, but stayed there until we both got up at 8:00 a.m. That was a first! (hoping a first of many!) I am thinking that the pain is decreasing in my sleep as well, which is allowing me to sleep...my opinion!
My stress level is through the roof. Here comes the honest part. Family! I am still having problems with my daughter, which I am trying so very hard to distance myself when she is so negative. I am trying to tell her, that I will be a part of her life when she is positive, no other time. Is it selfish on my part to only want to be part of her life on MY terms now because of all the things she has done to me? Who makes the rules in these games? You read all the books, and they all have different answers / rules...depending on the author. Who made them experts? I'm exhausted trying to do the "right" thing and not piss off everyone, and in the mean time, I have exhausted myself..and hurt ME. Damned if you do...........Damned if your don't!
My son, we are trying to help him get his life together, which is fine since he is helping himself. I enjoy that. He just graduated a program at our local college and I am so proud of him. He's been so scared to "move" anywhere in life, and he just completed this program, and I can see the difference in him when I look at him. It's amazing how confident he is now...more so than any time in his life. Now to the next chapter. : )
My father! Here comes my big stressor in my life right now. What do you do with your Father? Him and my son had a big falling out, and honestly, I have nothing to do with it, but it brings up my entire childhood, and so I am right smack in the middle of it. My son made a deal with my Father, and it fell through. We are helping my son MORE now. We don't have the money to do it. I don't have the 'health' to do it. BUT, we both want to do it, and enjoy helping him and enjoy seeing him grow. The problem is, I hear and see the pain that my Father is causing my son, and it reminds me of everything I went through growing up..some that I thought I had forgotten..and now remember. I don't know what to do with it all. I don't know how to help my son with it, though he is far more outspoken that I ever was. I guess since he was never close with my Father it is easier for him to say how he feels. He was hurt, thinking that he would get another Father figure,and family, and was basically told to get out of his life. I've joked through the years that my Father doesn't LIKE me, and he got to witness that, up close, and sadly, and painfully, I got reminded of it again. It's been a rough week, with more, and new stress.
But, we have been able to help my son, which I am grateful for (Charles, thank you) and will be able to see him grow even more now. I have wanted a "family" so badly in my life...who says it had to include your Father? Maybe, it could be just Charles and I and the children that choose to come around??
So, when you have been sick for so long, and you have just watched the world go past you....how do you stop it, and jump back on? With so many different areas in your life that have "just been"..where to do pick an opening to jump into? Spouse, Children, Working, Home, Friends, Family, Health ...the world.....where do you start to learn again? I listen about Charles' clients that come out of prison, spending 10, 15 or 20 yrs behind those huge walls, never knowing what is going on in this world. I feel like that. The last 10 years, I have lived inside this house, only leaving to go see my Doctors or Meetings, or with Charles. The world has changed...this town has changed.
Where do I fit in? Where am I going to jump BACK in?
Today, I am so overwhelmed, I don't know where to begin. I took my 4th Humira shot yesterday, and something happened within hours. My vision started to change, I was seeing double, and everything was bright..so bright to the point of being painful. My body was electrified...how is that for a word? I can't think of a word better to describe what I was feeling. Not static. But, as if I had put my finger, just the tip, being a little wet, into the electrical outlet for a second. I have felt like this for the last 24 hrs. Not as intense today, but it's there. Kind of in the background. My face almost feels numb, like a night of too much partying. Hmmm, could you explain that one to your doctor. Ha ha, of course, how else did he or she make it through med school and hours of residency? THEY know.
I had gone to the Orthopedic Doctor the day before, and they asked if I had been sick because of the temp I had. VERY low. He explained to me, since I was on Humira, I was to take my temp in the morning BEFORE my injection and if it was over normal, NOT to take the injection and call my Doctor. I did take my temp and it was 97.9, so I took the injection. Since then, I have taken it and it's been around 96.3, and 97. I am wondering if it is broken. I have been coughing, a lot, and a little out of breath. I am praying my thermometer isn't broken, and I am a little sick! Tomorrow, I plan on buying a new one to be sure! The side effects of Humira are...frightening if you are sick!
My pain level seems to be decreasing with each injection, which I am SO very grateful for, and then increasing when the next injection comes due. Monday on the second week, the pain comes back, increasing each day until my shot is due on Thursday. The pain in my SI joints are calming down, but the strange thing is I can feel more pain in my shoulders and other joints now, like my hands. It seems like I can't use them as well any more. I am wondering if it is because I am using them more now. I do know, for once in my life maybe, I am getting more sleep. Charles turned off the TV at around 11:30 p.m. last night because I couldn't stay awake, and I didn't get out of bed until 2:30 a.m. : ) I woke up a few times before then, but I actually stayed in bed!! From 2:30 a.m. on, I was awake on and off, but stayed there until we both got up at 8:00 a.m. That was a first! (hoping a first of many!) I am thinking that the pain is decreasing in my sleep as well, which is allowing me to sleep...my opinion!
My stress level is through the roof. Here comes the honest part. Family! I am still having problems with my daughter, which I am trying so very hard to distance myself when she is so negative. I am trying to tell her, that I will be a part of her life when she is positive, no other time. Is it selfish on my part to only want to be part of her life on MY terms now because of all the things she has done to me? Who makes the rules in these games? You read all the books, and they all have different answers / rules...depending on the author. Who made them experts? I'm exhausted trying to do the "right" thing and not piss off everyone, and in the mean time, I have exhausted myself..and hurt ME. Damned if you do...........Damned if your don't!
My son, we are trying to help him get his life together, which is fine since he is helping himself. I enjoy that. He just graduated a program at our local college and I am so proud of him. He's been so scared to "move" anywhere in life, and he just completed this program, and I can see the difference in him when I look at him. It's amazing how confident he is now...more so than any time in his life. Now to the next chapter. : )
My father! Here comes my big stressor in my life right now. What do you do with your Father? Him and my son had a big falling out, and honestly, I have nothing to do with it, but it brings up my entire childhood, and so I am right smack in the middle of it. My son made a deal with my Father, and it fell through. We are helping my son MORE now. We don't have the money to do it. I don't have the 'health' to do it. BUT, we both want to do it, and enjoy helping him and enjoy seeing him grow. The problem is, I hear and see the pain that my Father is causing my son, and it reminds me of everything I went through growing up..some that I thought I had forgotten..and now remember. I don't know what to do with it all. I don't know how to help my son with it, though he is far more outspoken that I ever was. I guess since he was never close with my Father it is easier for him to say how he feels. He was hurt, thinking that he would get another Father figure,and family, and was basically told to get out of his life. I've joked through the years that my Father doesn't LIKE me, and he got to witness that, up close, and sadly, and painfully, I got reminded of it again. It's been a rough week, with more, and new stress.
But, we have been able to help my son, which I am grateful for (Charles, thank you) and will be able to see him grow even more now. I have wanted a "family" so badly in my life...who says it had to include your Father? Maybe, it could be just Charles and I and the children that choose to come around??
So, when you have been sick for so long, and you have just watched the world go past you....how do you stop it, and jump back on? With so many different areas in your life that have "just been"..where to do pick an opening to jump into? Spouse, Children, Working, Home, Friends, Family, Health ...the world.....where do you start to learn again? I listen about Charles' clients that come out of prison, spending 10, 15 or 20 yrs behind those huge walls, never knowing what is going on in this world. I feel like that. The last 10 years, I have lived inside this house, only leaving to go see my Doctors or Meetings, or with Charles. The world has changed...this town has changed.
Where do I fit in? Where am I going to jump BACK in?
Monday, April 9, 2012
Monday, 4/9/12...Wow, what a day it's been. You know how Doctors tell you to control your stress? Might as well be telling us to control the weather, right! I told myself, I would be honest on this blog, because when people start reading it, and responding, I want them to be able to come here and be honest as well. So, here goes. I have a daughter who has bi polar, and I spent a few hours today with her, and my lovely grandson. I helped her apply for Disability. Things went well, until what she needed from me was over, then all hell broke loose. Hmmm, funny how that seems to keep happening Anyway, I came home in tears, telling myself I was not going to put myself through this again. Actually, this is just an extension of Easter...Father issues...we all have them, right? But, this, right now, is about stress.
Humira reduces my immune system to zero, well almost, and stress, well, it will take it the rest of the way to zero, quickly! The Doctor informed us that if I get sick...1. I can't take my shots, and the pain will increase, and NO ONE wants that....2. If I get too sick, I will be admitted into the hospital, and Lord, I don't want any more trips into the hospital! Have you read the side effects of Humira? Bad, bad side effects!! So, keeping your stress level down is very important, and so far, I haven't done a very good job of it..yet.
My pain level has gone down some since my third injection. I do see a pattern during the week OF the injection, the pain is more tolerable, but the week AFTER the injection, the pain increases and I have to take more vicodin and other pain relief medications. I don't see my Doctor until the end of May, where we are going to talk about increasing my injections to weekly. Night time is horrible. I think it's because I am in one position for so long, and when I move, it feels like my hips are breaking. There is other pain as well. Hands, wrists, fingers, ankles, shoulders, ...oh hell, it's all over! ha ha!! Soon as you say, "all over'', you become the Fibro Queen though.
Maybe tomorrow, I'll have a "positive'' day, and I can catch you up on everything else of my medical history that might have something to do with AS and introduce you to my family. I haven't figured out how to put pictures on here yet, but I'll work on that as well. Since we joined the "new age" and got a phone with a camera, I'll have a lot of pictures to share.
There is so much to talk about....so the beginning sounds like the best place to start....
Humira reduces my immune system to zero, well almost, and stress, well, it will take it the rest of the way to zero, quickly! The Doctor informed us that if I get sick...1. I can't take my shots, and the pain will increase, and NO ONE wants that....2. If I get too sick, I will be admitted into the hospital, and Lord, I don't want any more trips into the hospital! Have you read the side effects of Humira? Bad, bad side effects!! So, keeping your stress level down is very important, and so far, I haven't done a very good job of it..yet.
My pain level has gone down some since my third injection. I do see a pattern during the week OF the injection, the pain is more tolerable, but the week AFTER the injection, the pain increases and I have to take more vicodin and other pain relief medications. I don't see my Doctor until the end of May, where we are going to talk about increasing my injections to weekly. Night time is horrible. I think it's because I am in one position for so long, and when I move, it feels like my hips are breaking. There is other pain as well. Hands, wrists, fingers, ankles, shoulders, ...oh hell, it's all over! ha ha!! Soon as you say, "all over'', you become the Fibro Queen though.
Maybe tomorrow, I'll have a "positive'' day, and I can catch you up on everything else of my medical history that might have something to do with AS and introduce you to my family. I haven't figured out how to put pictures on here yet, but I'll work on that as well. Since we joined the "new age" and got a phone with a camera, I'll have a lot of pictures to share.
There is so much to talk about....so the beginning sounds like the best place to start....
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