I was raised Mormon and now I drink coffee. Aaaaack! If you have never been Mormon I don't know if you can grasp the gravity of that statement. But, of course, I will tell you a story.
Mormons and coffee: My parents joined the Church of Jesus Christ of Latter Day Saints in 1973. I was 2. I was baptized when I was 8. Coffee is such a big deal in the Mormon church that you cannot be baptized if you drink it and you have to promise not to drink it. Ever. I'm not going to get into why because this is not a post about religion. It is a post about me. Drinking coffee.
So, last fall, 2016, I went to see my Gastroenterologist. I have been plagued with liver problems for years. Once I had my primary doctor sit me down, look me in the eye, and ask, "Are you sure you don't drink?" I said, "NO!" Really? I am Mormon and Diabetic. I religiously and physically cannot tolerate alcohol. But she was worried that I had Cirrhosis of the Liver. She was surprised. I had an ultrasound and confirmed it was still just Fatty Liver Disease but it was pretty bad. That was in 2014, I think. Anyway in 2016 my liver enzymes are high again. ALT and AST. That is a sign of Liver problems and for me most likely Fatty Liver Disease. It used to be that Cirrhosis was a disease of alcoholics but these days it is a disease of our diet. And I don't think it's even our fault. There is High Fructose Corn Syrup in everything! Alcohol and Sugar are basically the same thing in our Liver.
So, my current doctor, Dr. Frech, tells me he wants me to start drinking coffee. I'm like, what?! He says that there are studies that show it is good for the Liver. It needs to be black drip coffee. Not espresso or any of the fancy drinks. No milk or sugar. One cup is good, 3 cups is best, but there is no added benefit in the 4th cup. Wow! That was a lot to take in. Mentally. But I liked that it was not pharmaceutical. So, I said I would do it.
I started by calling all of my children and my mother and letting them know that I was going to start drinking coffee. I told them it was doctor's orders. Which is the truth. I decided my Bishop didn't need to know. This was between me and my doctor and God.
How do you start drinking coffee??? My parents don't drink coffee. No one in my house drinks coffee. I have never really drank coffee. And now I need to start drinking it every day. I started by putting a LOT of thought into this.
My Grandparents always drank coffee. In fact when they would come to my parents house to celebrate a birthday they would bring instant because they said you can't have cake without coffee. I can't drink instant. It has to be drip. My Aunt and Uncle drink coffee but I never paid much attention and they aren't in the same state. I felt like I needed someone to hold my hand. I had a good friend at work named Brodie. He drank coffee. He walked to Starbucks every day, twice a day, and got coffee. I decided to ask Brodie for help.
So, the next time I went to work I told Brodie my dilemma and asked if I could go to Starbucks with him. I noticed that drinking coffee could be a social thing at work. Like smoking. I used to smoke. That's a whole other story. Anyway, I got to socialize with people that I didn't normally talk to because I would run into them with Brodie on our way to Starbucks. Sometimes I felt like I was intruding but they treated me like that was silly. Everyone was so nice. That first day at Starbucks was so scary. I was out of my element. I was in someone else's terrain. This was unfamiliar. What do I do?! So, I told the barrista(that's a person that works in a coffee shop) my dilemma. Fortunately there wasn't a terribly long line at that moment. She told me there are 3 main kinds of coffee. Light roast, medium roast and dark roast. My first step would be choosing one. She would give me tastes for free. So, I made three trips to Starbucks that day to taste coffee. The first one was Light. I thought that would be milder and easier to drink. I was wrong! It was so bitter! And the barrista told me it actually had the highest caffeine content. Gross! The second one was medium. It was tolerable. kinda. The last one was the dark roast. It was too strong. Whew! That was enough for one day. I had consumed 3 ounces of coffee. Not even half a cup.
The next day I went into Starbucks and bought a pretty pink cup and asked the barrista to fill it with Pike Place. That's the medium roast. I was so proud of myself. I had made a decision. Oh my gosh! It was so gross and so hot. Brodie told me that I can have ice in it. The ice helped. So, then I started asking them to put ice in it. Then we discussed alternatives to milk. I started asking them to put ice and almond milk in it. Then one of the barristas pointed out that there were seasonings on the counter. I tried all of them one at a time. It turned out I really like Cinnamon in my coffee. So I started adding Cinnamon and Splenda. I finally found a coffee I could tolerate and I sounded like those fancy coffee drinkers. I would order pike with ice and almond milk. Then I would add Splenda and Cinnamon. It took like a month to get to that point.
I ordered a coffee maker. That was crazy. I didn't even know where to start. In retrospect I spent way too much. I love my Ninja blender and discovered that they make a coffee maker. I bought a Ninja coffee maker with a coffee bean grinder. Don't ask how much it cost. It was ridiculous. I only use purified water in my coffee maker. I found Pike Place coffee beans at my local supermarket. The filters were crazy confusing. I realized recently that I have been buying the wrong size all this time. I just bought the right size and it works so much better. I had actually started cutting the other ones down a while back. haha. Then, figuring out how much coffee to put in the filter was daunting. It was trial and error. I use 3 little scoops(the coffee maker came with a scooper) in the grinder for my morning coffee. Then I had to choose the appropriate setting. The setting I use makes 15 ounces. My coffee maker came with special cups. I added ice, coffee, almond milk, splenda and cinnamon. That was my coffee. I would do that on the weekends and go to Starbucks on my work days.
Life changed in January. I have worked a total of 28 days since January 17th. I'm on Long Term Disability now. Then they closed the Starbucks that we used to walk to at work. Those were major dilemmas for a new coffee drinker!
Because of my health issues I changed my diet in April to a Keto diet. That affected my coffee. There is something called Bullet Proof Coffee. There is definitely more than one way to make it but I didn't like any of them. The point is to add tons of fat to your coffee. Things like heavy cream, butter, MCT oil, coconut oil. I didn't have MCT oil but I had the rest so I added butter, heavy cream and coconut oil. Gross! I felt like someone said to themselves, "How can I make coffee nastier than it already is?" What I did do was trade my almond milk for heavy cream and my Splenda for liquid sucralose and my coffee had evolved. In fact I liked it better. Heavy cream is yummy.
I had another coffee upset later that month. I went to a Starbucks in Arizona. It was late April so it was already in the 90s. I asked the barrista to put ice in my coffee and she asked if I wanted an iced coffee. What? My coffee education continues? What is an iced coffee. She said it was coffee with ice in it. So I said yes. I would like an iced coffee with heavy cream. I loved that first one. I later learned it was so good because of something called Classic that they squirt in that is loaded with sugar. So, then I had to ask for an Iced Coffee, Heavy Cream, No Classic and then add my Splenda and Cinnamon. Whew!
So, that is what I have been enjoying for the last 5 months. Until now. I am dropping my Heavy Cream. 😿 The same doctor recommended the Low FODMAP diet for my Irritable Bowel Syndrome last year. I was not willing to got that far at the time. Things have gotten bad enough now that I am ready. No more cream.
So, now I drink 15 ounces of black coffee with ice, sucralose drops and Cinnamon every day. I actually enjoy it. It is no longer a chore. It was definitely better with the cream but health is my goal. It is not bullet proof but it is also not a sugary concoction so I think I am doing well.
Wednesday, October 18, 2017
Keto Day 1, Again
I started my day with a breakfast of cheesecake and lemon meringue pie filling. Why just the filling. I really really don't like meringue. So, that part is easy. The crust...when I have been on a diet for a while (I did keto successfully for over 5 months) you get used to not eating certain foods and I have to REALLY like them to cheat. I'm not supposed to eat grains and the crust on lemon meringue pie is not worth cheating for. I washed down my pie with coffee and diet coke.
Shortly after my super healthy breakfast I talked to my therapist. I am super lucky that I can do therapy over google hangout. It's the best. There are on occasion technical issues but it's worth it not to have to drive an hour to get to her. It's hard to find a good therapist. When I do, I hold on tight! Right now I talk to her twice a week. She would love for me to come into her office but I am just not up for that right now. She always gives me homework. Sometimes I do it. Yesterday she told me to only eat healthy food until I talk to her again in 2 days. Aaaaack! This time it was easier to do my homework because it was something I wanted to do anyway.
On September 20th my husband had minor brain surgery. That night I started cheating. On October 17th I decided, "Enough!" and got back on track.
Fortunately, this time I don't have to learn how to do it. I know that part. But to make it a little harder I am going to incorporate the Low FODMAP diet that my doctor has been trying to get me on for about a year. I grew up in Arizona and I married a Mexican. Now my doctor wants me to stop eating Avocados, Garlic and Onions?! I think that's what I'm made of! But my bloating from Irritable Bowel Syndrome has gotten so bad that I can't wear most of my pants anymore. My new style is leggings with a tunic top. And sometimes my leggings feel too tight around my belly. That is motivation to try Low FODMAP. I am seeing a dietician to help me with this. I was skeptical because most of the ones that I have seen in the past just tell me how to count carbs and push the standard american diet. This one took an hour to listen to my needs. She is going to help me! She wants me to send her a list of foods I don't like so she can help me with a menu. That has been overwhelming so I haven't done it yet. Maybe that should be today's goal.
What I ate yesterday after therapy:
lots of shrimp - www.grasslandbeef.com
almonds - kroger salted
pork rinds - kroger with Frank's Red Hot
meat stick - www.grasslandbeef.com
string cheese - Frigo Cheeseheads
sea weed - Kim's roasted seaweed snack sea salt (I get it on Amazon)
diet coke
starbucks pike place coffee with cinnamon and liquid sucralose
powerade zero
water
I know I need more veggies but I think I did pretty well for the same day as a sugar binge. I was super craving a snickers in the evening. I get cravings when I'm tired. I was very tired and there was a snickers in my hand that morning that I gave to my daughter along with a York peppermint patty and an unopened quart of eggnog so that I wouldn't eat them. I was really regretting that by bedtime. But I survived.
Some foods are harder to give up because of the emotions attached. Yesterday afternoon my 5 year old granddaughter, Amanda told me that she liked the drink I gave them. I had mixed feelings of jealousy that she drank my Eggnog and pride that she liked it. Not everyone likes Eggnog. Eggnog reminds me of my Grandpa. I am lucky. My Grandpa looked and acted like Santa. So, for me Santa is real and his name is Arthur. He made Eggnog. I never had any because it was for grown ups. But I have always loved Eggnog because of it. When a family member wouldn't like it I was sad because how could anyone not like something that reminds me of Grandpa? When I taste it's sweetness and feel it coat the inside of my mouth it is like being filled with love and warm memories. I am grateful that Amanda likes it. A big chain of generations of Eggnog drinkers.
Shortly after my super healthy breakfast I talked to my therapist. I am super lucky that I can do therapy over google hangout. It's the best. There are on occasion technical issues but it's worth it not to have to drive an hour to get to her. It's hard to find a good therapist. When I do, I hold on tight! Right now I talk to her twice a week. She would love for me to come into her office but I am just not up for that right now. She always gives me homework. Sometimes I do it. Yesterday she told me to only eat healthy food until I talk to her again in 2 days. Aaaaack! This time it was easier to do my homework because it was something I wanted to do anyway.
On September 20th my husband had minor brain surgery. That night I started cheating. On October 17th I decided, "Enough!" and got back on track.
Fortunately, this time I don't have to learn how to do it. I know that part. But to make it a little harder I am going to incorporate the Low FODMAP diet that my doctor has been trying to get me on for about a year. I grew up in Arizona and I married a Mexican. Now my doctor wants me to stop eating Avocados, Garlic and Onions?! I think that's what I'm made of! But my bloating from Irritable Bowel Syndrome has gotten so bad that I can't wear most of my pants anymore. My new style is leggings with a tunic top. And sometimes my leggings feel too tight around my belly. That is motivation to try Low FODMAP. I am seeing a dietician to help me with this. I was skeptical because most of the ones that I have seen in the past just tell me how to count carbs and push the standard american diet. This one took an hour to listen to my needs. She is going to help me! She wants me to send her a list of foods I don't like so she can help me with a menu. That has been overwhelming so I haven't done it yet. Maybe that should be today's goal.
What I ate yesterday after therapy:
lots of shrimp - www.grasslandbeef.com
almonds - kroger salted
pork rinds - kroger with Frank's Red Hot
meat stick - www.grasslandbeef.com
string cheese - Frigo Cheeseheads
sea weed - Kim's roasted seaweed snack sea salt (I get it on Amazon)
diet coke
starbucks pike place coffee with cinnamon and liquid sucralose
powerade zero
water
I know I need more veggies but I think I did pretty well for the same day as a sugar binge. I was super craving a snickers in the evening. I get cravings when I'm tired. I was very tired and there was a snickers in my hand that morning that I gave to my daughter along with a York peppermint patty and an unopened quart of eggnog so that I wouldn't eat them. I was really regretting that by bedtime. But I survived.
Some foods are harder to give up because of the emotions attached. Yesterday afternoon my 5 year old granddaughter, Amanda told me that she liked the drink I gave them. I had mixed feelings of jealousy that she drank my Eggnog and pride that she liked it. Not everyone likes Eggnog. Eggnog reminds me of my Grandpa. I am lucky. My Grandpa looked and acted like Santa. So, for me Santa is real and his name is Arthur. He made Eggnog. I never had any because it was for grown ups. But I have always loved Eggnog because of it. When a family member wouldn't like it I was sad because how could anyone not like something that reminds me of Grandpa? When I taste it's sweetness and feel it coat the inside of my mouth it is like being filled with love and warm memories. I am grateful that Amanda likes it. A big chain of generations of Eggnog drinkers.
Tuesday, October 17, 2017
Why I started watching YouTube (Dysautonomia) - October is Dysautonomia Awareness Month
Back in February I was diagnosed with Dysautonomia. I had never heard of it. The doctor had to repeat it 3 times and spell it for me. He ended up writing it down. He told me to go home and look it up on the internet. That led me to YouTube. Most of the people on YouTube with Dysautonomia have POTS, postural orthostatic tachycardia syndrome. That is not exactly what I have but it is close. Some say there is no difference but I feel like there is. I have Orthostatic Intolerance. My definition of that is when I stand up my body says, "you wanna sit down" and pushes me down no matter where I am. I don't actually pass out. I just really have to sit down and don't have much of a choice. My heart races and my blood pressure gets high. With POTS the blood pressure drops and they pass out. Some people pass out several times a day. If I have this right what happens is when a person stands the blood pools in their legs. The blood pressure rises to bring the blood up to the head. In POTS, since the blood pressure drops the blood stays in the legs and doesn't get to the head so they pass out. With me my blood pressure rises. That's probably why I don't pass out but I still have the blood pooling in my legs and have to sit down. The tachycardia must have something to do with it.
I have a good cardiologist and a good neurologist but I don't really have a Dysautonomia specialist. So I have actually learned more from YouTube about this condition than I have from my doctors.
I take Metoprolol to keep my heart rate down and Lisinopril to keep my blood pressure down. I use a rollator. That is a new word for me. I call it a walker. But it has wheels and a seat so it's a rollator. It's a nice one. Red. Carbon fiber. Light weight. In my dreams I don't use it but in real life it makes me much more functional. I have to make sure I have electrolytes so I salt everything. I drink Powerade Zero. It is sweetened with sucralose. That is one of the healthier artificial sweeteners. I get 1 liter of IV fluids twice a week. If I don't I end up in the emergency room with dehydration. I am not sure how that fits in. They recommend compression stockings to help push the blood up. The thing is, they are very expensive and insurance won't pay for them. They are also very difficult to put on. So, I haven't tried them yet. I did get an abdominal compress. That is supposed to help because blood pools in the abdomen too. When it arrived in the mail I put it on. It hurt. I wore it for a few minutes. I got light headed and felt very sick. I have not tried it again. I should probably point out that I do have many abdominal and digestive issues so maybe the abdominal compress will work for someone else but not for me. This condition also causes nausea. Fortunately mine is not as bad as what some people experience so I have gotten by with zofran and tums.
I am confident that my daughter Edna has POTS. She passed out a lot as a teenager and has a lot of the symptoms still. She is going to see one of the top Dysautonomia specialists in November. My older daughter, Kimberly passed out a lot as a teenager but she is more confusing. We are confident that she has hypoglycemia so if she has POTS or Orthostatic Intolerance it is harder to tell. It's not bothering her bad enough to look into it at this time.
I have a good cardiologist and a good neurologist but I don't really have a Dysautonomia specialist. So I have actually learned more from YouTube about this condition than I have from my doctors.
I take Metoprolol to keep my heart rate down and Lisinopril to keep my blood pressure down. I use a rollator. That is a new word for me. I call it a walker. But it has wheels and a seat so it's a rollator. It's a nice one. Red. Carbon fiber. Light weight. In my dreams I don't use it but in real life it makes me much more functional. I have to make sure I have electrolytes so I salt everything. I drink Powerade Zero. It is sweetened with sucralose. That is one of the healthier artificial sweeteners. I get 1 liter of IV fluids twice a week. If I don't I end up in the emergency room with dehydration. I am not sure how that fits in. They recommend compression stockings to help push the blood up. The thing is, they are very expensive and insurance won't pay for them. They are also very difficult to put on. So, I haven't tried them yet. I did get an abdominal compress. That is supposed to help because blood pools in the abdomen too. When it arrived in the mail I put it on. It hurt. I wore it for a few minutes. I got light headed and felt very sick. I have not tried it again. I should probably point out that I do have many abdominal and digestive issues so maybe the abdominal compress will work for someone else but not for me. This condition also causes nausea. Fortunately mine is not as bad as what some people experience so I have gotten by with zofran and tums.
I am confident that my daughter Edna has POTS. She passed out a lot as a teenager and has a lot of the symptoms still. She is going to see one of the top Dysautonomia specialists in November. My older daughter, Kimberly passed out a lot as a teenager but she is more confusing. We are confident that she has hypoglycemia so if she has POTS or Orthostatic Intolerance it is harder to tell. It's not bothering her bad enough to look into it at this time.
The Worst Day Ever
Last night was a bad night. One year ago last night my baby girl called and said, "Mom, I need you now." She was 4 hours away for most people, six hours away for me. We made it in record time. (for me) To celebrate the anniversary...celebrate is the wrong word...commemorate? Deal with? Is there a word for live through an anniversary? Anyway, I ate six donuts. Then I got so sick. I felt like crap and my husband said I was cranky. He doesn't usually say that. I'm an uncontrolled diabetic but I have eating disorders and I don't know how to deal with this so I turned to food. I waited a while and then checked my blood sugar. It was 334. So I took 14 units of insulin. I felt very bad for what I did to myself. I don't want to die but for me sugar is addiction. Just like alcohol or drugs for someone else. I waited a while and then I checked again. It was 261. It came down. That is still not good but it's better than it was. So, I ate the filling of half of a lemon meringue pie and half of a small cheesecake. Well, I didn't finish the half of the small cheesecake so I get some credit for that, right? I couldn't finish the hallmark movie. I was falling asleep. I texted Edna and she said she's doing good. If she is ok, how come I'm not?
There is this rule(in my head). That when your child needs something you find a way to provide it. That's why instead of going to bed a year ago I drove to be at my daughter's side. When we arrived she came out to greet us and told us that Marcus said, "Where is my mom?" In that moment I wanted to turn myself into her. But really, I wanted to make his mom appear out of thin air. Then we could both be there. She could take care of her child and I could take care of mine. But really we have shared our children since the day we met. Marcus is mine and Edna is hers. Today it is her with my child. It is me on the other side. But I am pretty sure Edna will be okay. I didn't save Marcus that day. He died. The doctors wanted an autopsy but the medical examiner said he didn't need one. So, he didn't get one. It was 2 weeks later that my body woke up and said, "No! We are doing the autopsy!" It was too late. He had been cremated. This must be my logical work brain kicking in but that it why we need wills, advanced directives, funeral plans, life insurance. Because on that day when the trauma has happened no one wants to make those decisions. I want my body donated to Sarcoidosis research.
We drove to every store in town looking for orchids. Edna wanted white orchids. We found one. Now I see orchids everywhere and inside I scream at the orchids, "Where were you when I needed you?!"
I don't do well with death. I haven't since I was a child. My grandma was my first. But this has been the worst. I am not all powerful. I couldn't save him and I feel responsible. I can't make my children happy all the time. I can't fix everything for them. These are hard lessons. Marcus, I love you and I wish you would come back. I just really wish that I could have woken up today and found out that this past year was just the worst nightmare ever.
Marcus was my 23 year old son in law. He died last year of Burkitt Lymphoma Leukemia. Diagnosed on a Friday and passed the following Monday.
There is this rule(in my head). That when your child needs something you find a way to provide it. That's why instead of going to bed a year ago I drove to be at my daughter's side. When we arrived she came out to greet us and told us that Marcus said, "Where is my mom?" In that moment I wanted to turn myself into her. But really, I wanted to make his mom appear out of thin air. Then we could both be there. She could take care of her child and I could take care of mine. But really we have shared our children since the day we met. Marcus is mine and Edna is hers. Today it is her with my child. It is me on the other side. But I am pretty sure Edna will be okay. I didn't save Marcus that day. He died. The doctors wanted an autopsy but the medical examiner said he didn't need one. So, he didn't get one. It was 2 weeks later that my body woke up and said, "No! We are doing the autopsy!" It was too late. He had been cremated. This must be my logical work brain kicking in but that it why we need wills, advanced directives, funeral plans, life insurance. Because on that day when the trauma has happened no one wants to make those decisions. I want my body donated to Sarcoidosis research.
We drove to every store in town looking for orchids. Edna wanted white orchids. We found one. Now I see orchids everywhere and inside I scream at the orchids, "Where were you when I needed you?!"
I don't do well with death. I haven't since I was a child. My grandma was my first. But this has been the worst. I am not all powerful. I couldn't save him and I feel responsible. I can't make my children happy all the time. I can't fix everything for them. These are hard lessons. Marcus, I love you and I wish you would come back. I just really wish that I could have woken up today and found out that this past year was just the worst nightmare ever.
Marcus was my 23 year old son in law. He died last year of Burkitt Lymphoma Leukemia. Diagnosed on a Friday and passed the following Monday.
Saturday, October 14, 2017
Needles Make Me Cry
When I was a child I was praised by my mother because I didn't cry when I had my shots. When I was 6 years old I had rheumatic fever. To discover that diagnosis they had to draw my blood. They had to stick me 7 times before they got the blood that they needed. I used to enjoy going to the dentist and I never had a problem with needles. That has changed.
Yesterday I went to get my IV fluids. I get a liter twice a week. If I don't I end up in the emergency room for dehydration. I don't know why. It may be related to Dysautonomia. We are trying to determine if I have Diabetes Insipidous. But in the meantime I need the infusions. Yesterday, I couldn't handle it. When she stuck the needle in my arm, I cried. It hurts. My skin is tough, my veins don't cooperate. The first attempt did not succeed. I know it wasn't the nurse because a couple weeks ago she got it on the first try! That is rare for me. Yesterday it took 2 attempts. With my tears pouring down my cheeks I thought of the needles in my life.
I have to poke my finger 3 times a day to check my blood sugar.
I have to give myself a shot in the butt at least 4 times a day for my insulin. If the pen is running out and doesn't have a whole dose I get an extra shot. I do it in my butt because I read that the injections attract fat and that is the only place on my body that I am willing to invite fat.
So, on a good day I get 7 needles.
2 times a week I get an IV for my fluids.
1 time a week I have to give myself a shot of Methotrexate. My chemotherapy for Sarcoidosis. That helped me see for myself that I have tough skin. The nurses told me to inject it deep in my thigh so it will go into the muscle. So, I sat on my bed. My husband sat beside me for moral support. I got the needle ready and put it in my leg. Maybe I should say I put it on my leg. I meant to inject it but my skin is so tough that it just made a dent. Is the needle dull? Is it because I'm so weak? I was frustrated. My husband helpfully suggested that I just jab it in. I felt that if I picked it up it wasn't touching my skin again. So, I gathered my strength and pushed harder. I kept increasing the pressure until it finally broke the skin. Then I slowly injected all of the poison into my body. I removed the needle and realized I had nowhere to put it. I need to buy a sharps container. But it was done. It didn't really hurt physically. You can't even see the injection site on my leg. But emotionally....I was in turmoil. And I guess I still am.
Then there are blood draws. I go to the doctor a LOT. And almost every time they order lab tests. For my rheumatologist I will have to get my blood drawn at least once a month to make sure the Methotrexate is not hurting my liver, kidneys or bone marrow. The last time I was there his phlebotomist took 3 tries to get the blood that was needed. I have a huge bruise.
Lastly, sometimes the doctors want to give me shots or poke my fingers.
I can't even count how many needles have entered my body this year. My skin and veins are screaming, "enough!". One nurse said it was like my vein has a seizure or a panic attack when she tries to thread the IV. Sometimes they pop.
I am going to make a special appointment to get a port. That is a special place in my chest where they can put the IV and draw blood so that they don't have to find a vein all the time. A nurse told me I can use an anesthetic cream half an hour before I see them so that the needle doesn't hurt when it pierces my skin. So far all of the doctors have said no but I'm going to keep asking until I find the one who understands.
Yesterday I went to get my IV fluids. I get a liter twice a week. If I don't I end up in the emergency room for dehydration. I don't know why. It may be related to Dysautonomia. We are trying to determine if I have Diabetes Insipidous. But in the meantime I need the infusions. Yesterday, I couldn't handle it. When she stuck the needle in my arm, I cried. It hurts. My skin is tough, my veins don't cooperate. The first attempt did not succeed. I know it wasn't the nurse because a couple weeks ago she got it on the first try! That is rare for me. Yesterday it took 2 attempts. With my tears pouring down my cheeks I thought of the needles in my life.
I have to poke my finger 3 times a day to check my blood sugar.
I have to give myself a shot in the butt at least 4 times a day for my insulin. If the pen is running out and doesn't have a whole dose I get an extra shot. I do it in my butt because I read that the injections attract fat and that is the only place on my body that I am willing to invite fat.
So, on a good day I get 7 needles.
2 times a week I get an IV for my fluids.
1 time a week I have to give myself a shot of Methotrexate. My chemotherapy for Sarcoidosis. That helped me see for myself that I have tough skin. The nurses told me to inject it deep in my thigh so it will go into the muscle. So, I sat on my bed. My husband sat beside me for moral support. I got the needle ready and put it in my leg. Maybe I should say I put it on my leg. I meant to inject it but my skin is so tough that it just made a dent. Is the needle dull? Is it because I'm so weak? I was frustrated. My husband helpfully suggested that I just jab it in. I felt that if I picked it up it wasn't touching my skin again. So, I gathered my strength and pushed harder. I kept increasing the pressure until it finally broke the skin. Then I slowly injected all of the poison into my body. I removed the needle and realized I had nowhere to put it. I need to buy a sharps container. But it was done. It didn't really hurt physically. You can't even see the injection site on my leg. But emotionally....I was in turmoil. And I guess I still am.
Then there are blood draws. I go to the doctor a LOT. And almost every time they order lab tests. For my rheumatologist I will have to get my blood drawn at least once a month to make sure the Methotrexate is not hurting my liver, kidneys or bone marrow. The last time I was there his phlebotomist took 3 tries to get the blood that was needed. I have a huge bruise.
Lastly, sometimes the doctors want to give me shots or poke my fingers.
I can't even count how many needles have entered my body this year. My skin and veins are screaming, "enough!". One nurse said it was like my vein has a seizure or a panic attack when she tries to thread the IV. Sometimes they pop.
I am going to make a special appointment to get a port. That is a special place in my chest where they can put the IV and draw blood so that they don't have to find a vein all the time. A nurse told me I can use an anesthetic cream half an hour before I see them so that the needle doesn't hurt when it pierces my skin. So far all of the doctors have said no but I'm going to keep asking until I find the one who understands.
Friday, October 13, 2017
Word Vomit, Chemo, Deathaversaries
There is so much to say!!! I should write more often. Then I wouldn't overwhelm the people around me. I really don't care if no one reads my blog but it were to help someone I would love that. Let's see if I can organize what is on my mind....
I have been waking up every day with severe anxiety. I have had a headache since I started chemo. Is chemo causing all of this or is it because October 17th is not far away. Tomorrow is the anniversary of the day we found out that Marcus had Burkitt's Lymphoma. But it was a Friday and today is Friday so it feels like today is that day.
Today I am trying to focus on something happier. I married the love of my life on March 13, 1992. I'll just copy my facebook post so I don't have to say it again....
Today is my 25 year 7 month anniversary of being married to Antar. And it's Friday, October 13th. Antar and I were married on Friday, March 13th. We have told each other happy anniversary on the 13th of every month since then. When it lands on a Friday it is even more special. I had wanted to have a big party this year but it seems like my days of big parties are over. But, you know, there is no one I have ever met that I would rather be sick with. That may sound weird but it is true and if you have ever been sick you know that is quite the compliment. I read comments from people that have the conditions that I have and a lot of them don't have the support that I have. Antar loves me. I mean truly loves me. He has proven it. Regardless of my religious belief. He has loved me as a devout mormon and as an atheist. He has loved me when I was thin and fit and he has loved me when I was 230 pounds. He supports me when I want to study finance and when I want to be a musician or dancer. When I told him last year that I was going to be a fitness model he said ok and listened as I bragged about my awesome trainer. He listens to me when I go on about how great my friends from work are and how much I miss them. He goes with me to the emergency room or to sit in the uncomfortable chairs while I get my IV fluids. He really is my best friend. No matter how this journey turns out I know I picked the best partner to go through it with. My new goal is to figure out Sick Dating. Is sick still a positive term or did that go out of style? I saw on a friends post that there are paved hiking trails in Utah. Maybe we'll try that. I just have to find them. So, if you have any low energy dating ideas that aren't too far from Eagle Mountain, Utah, let me know.
We watch a LOT of TV. We have DirecTV, Netflix, Hulu, Amazon Prime, and YouTube Red. We rent discs from Netflix and Redbox. So, movies don't really feel special anymore. Don't get me wrong. I still love them. This year I have developed such gratitude to all of the filmmakers, writers and actors that help all of us chronically ill people through all of this. I hate to imagine what it was like to be this sick before TV. The week after his brain surgery Antar couldn't handle watching TV and it was torture for me. When I am feeling bad I have a short attention span so I look for YouTube videos that are 10 minutes or less. I get my news from Stephen Colbert, Bill Maher and that guy that was married to Katy Perry. The Trews. What the heck is his name? Anyway, sorry curly haired british guy. I really like you but my mind is blank at the moment. It's funny. I didn't really care for him as an actor but I absolutely love him on YouTube. He speaks from my heart when he talks about the world and politics and how we need to feel empowered and love each other. And his fight with addiction. He's a good guy. So, don't ever take it personally when I can't for the life of me remember your name and I don't want to change tabs to google it.
The point is that watching TV or a movie is not special. That is for getting through day to day life. Hiking would be special. Going to the beach would be special.
Yesterday I was trying to accept that I may not be able to go back to school even if it's online. I don't know that I can keep up with the commitment. My brain doesn't work the way it used to. That is very sad for me.
I have been waking up every day with severe anxiety. I have had a headache since I started chemo. Is chemo causing all of this or is it because October 17th is not far away. Tomorrow is the anniversary of the day we found out that Marcus had Burkitt's Lymphoma. But it was a Friday and today is Friday so it feels like today is that day.
Today I am trying to focus on something happier. I married the love of my life on March 13, 1992. I'll just copy my facebook post so I don't have to say it again....
Today is my 25 year 7 month anniversary of being married to Antar. And it's Friday, October 13th. Antar and I were married on Friday, March 13th. We have told each other happy anniversary on the 13th of every month since then. When it lands on a Friday it is even more special. I had wanted to have a big party this year but it seems like my days of big parties are over. But, you know, there is no one I have ever met that I would rather be sick with. That may sound weird but it is true and if you have ever been sick you know that is quite the compliment. I read comments from people that have the conditions that I have and a lot of them don't have the support that I have. Antar loves me. I mean truly loves me. He has proven it. Regardless of my religious belief. He has loved me as a devout mormon and as an atheist. He has loved me when I was thin and fit and he has loved me when I was 230 pounds. He supports me when I want to study finance and when I want to be a musician or dancer. When I told him last year that I was going to be a fitness model he said ok and listened as I bragged about my awesome trainer. He listens to me when I go on about how great my friends from work are and how much I miss them. He goes with me to the emergency room or to sit in the uncomfortable chairs while I get my IV fluids. He really is my best friend. No matter how this journey turns out I know I picked the best partner to go through it with. My new goal is to figure out Sick Dating. Is sick still a positive term or did that go out of style? I saw on a friends post that there are paved hiking trails in Utah. Maybe we'll try that. I just have to find them. So, if you have any low energy dating ideas that aren't too far from Eagle Mountain, Utah, let me know.
We watch a LOT of TV. We have DirecTV, Netflix, Hulu, Amazon Prime, and YouTube Red. We rent discs from Netflix and Redbox. So, movies don't really feel special anymore. Don't get me wrong. I still love them. This year I have developed such gratitude to all of the filmmakers, writers and actors that help all of us chronically ill people through all of this. I hate to imagine what it was like to be this sick before TV. The week after his brain surgery Antar couldn't handle watching TV and it was torture for me. When I am feeling bad I have a short attention span so I look for YouTube videos that are 10 minutes or less. I get my news from Stephen Colbert, Bill Maher and that guy that was married to Katy Perry. The Trews. What the heck is his name? Anyway, sorry curly haired british guy. I really like you but my mind is blank at the moment. It's funny. I didn't really care for him as an actor but I absolutely love him on YouTube. He speaks from my heart when he talks about the world and politics and how we need to feel empowered and love each other. And his fight with addiction. He's a good guy. So, don't ever take it personally when I can't for the life of me remember your name and I don't want to change tabs to google it.
The point is that watching TV or a movie is not special. That is for getting through day to day life. Hiking would be special. Going to the beach would be special.
Yesterday I was trying to accept that I may not be able to go back to school even if it's online. I don't know that I can keep up with the commitment. My brain doesn't work the way it used to. That is very sad for me.
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