The Spoon Theory ; By Chritine Miserandino (Borrowing this to make a point of how I feel each day)

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

A tiny bit sad

We had someone come and look at our house that is for sale again yesterday morning. I didn't get the message until around 9:30 for a showing between the hours of 9:45 - 11:45.I rushed around putting things here and there preparing for the people to come look at the house. I didn't have time to reflect because I was in a rush. 

Joel came home first and he and I started to get everything down from the garage attack that he has stored up there. That was quite a chore. Neither one of us realized there was so much stuff up there. 

After we brought all the boxes down he set them aside and we started going through the stuff on the shelves that we are taking with us for our move. We parted with some things and I half hazardously went through our bedroom closet for some things and a closet in the hallway. We had a pretty good size amount of things for a yard sale today. Well, a garage sale if nothing else. I thought since Joel was leaving next Saturday to fly to CA to meet with the jobs that want to see him, I would get him to clean the garage up. It was a wreck and I'm so proud of him for doing a bit with it. 

I opened the tack that my Dad had given to me and I see memories of growing up. Shiloh's hackamore. Tons of reins that have silver on them. Then I see my Saddles. The top and bottom of the 3 are so precious to me. plan on working on getting them all spiffed up when I move to CA. My Grandad's saddle is over 100 years old. It needs only new sheep skin in it. My Dad's saddle that is at least 50 years old or more needs a little sheep skin and a small piece of leather that came off the horn to be sown back on.

Being around the saddles memories flooding me from the past about riding horses almost daily. Saddling up my own horse or going bareback depending on the weather and my mood. I think to myself, "Will I have another chance to use these saddles?" My energy level is so low. I feel rushed about everything like there is no time. 

(This section has been taken out due to offending people with my words)

Only the strong stay strong with the help of God. all things are possible through Christ who gives me strength. 

I will try to not write too many posts like this. My heart is heavy today and I haven't slept well. 

Finally Brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable.... if anything is excellent or praiseworthy- think about such things.

Phippians 4:8 New International Version

Early morning sadness today.

I love Northern Idaho so much. I love that this state is very pro God, Country and of coarse love and family. I have made some amazing changes and friends in Northern Idaho. Since coming here I've lost 300 pounds. Learned to really love myself. Made lifelong friends that include many I've never actually met in person but only on the internet. I've lost 2 of my fur babies to old age and cancer. I've lost both of my brothers. I've got a team of physicians that I love and trust. I have people actual people that I feel I can say anything to and they will still love me anyway.

I'm so sad that we are having to leave here. I wonder if it would be any easier if we wanted to leave here... of coarse it would. I know what we are getting back into in CA. I love CA too but it is so different than Northern Idaho. I am a bit worried that Joel will be angry after we get there. Angry that he had to leave here. Both of us love the snow. I know Joel loves me more than Idaho but I hate the notion that he is having to leave because of my health and the Docs basically not giving him a choice. I hope that he still gets to go hunting in CA. That he takes the time and continues to do the things he loves to do up here. I hope he and I can do some fishing. He is looking forward to playing cards with my parents and games with his sisters and brothers. That makes me smile. He misses his family too.

I've been admitted to the hospital 4 times since the beginning of 2013! Four times hooked up for a couple of days at least of straight nitro as they try to get the vasal spasaming to stop. I adore the staff at KMC but I really, really don't want to have to ever go back there. Knowing the nurses on the PCU floor by name and about their families is too much for me to know. I'm glad that they are so kind and gentle with me but I'm ready to try to be hospital/Nitro IV free! I hope our move to California will be where God wants us. It seems that SLO county is where the jobs are calling Joel. He has sent out about 15 resumes to all over CA but the calls only come for interviews from SLO County. That seemed like the one place Joel wasn't wanting to move to.

I think that I have been very worried (secretly) about moving and sad. I'm trying to be happy and look at all things on the bright side but, It is hard and I've been denying my sadness. I believe by not allowing myself to be sad or emotional I am making my body sick with fevers. They come on me almost every day and I feel worn down and icky. Not just heart stuff but other stuff going on. I am going to try to allow myself to cry if I feel it coming on. To not stop the flow of tears. It's okay that I will be sad to move from Idaho. This has been a wonderful home to us despite all the loss. We have gained way more than we have lost!

 (prayer) Thank you God for bringing us to Idaho for a Season and thank you for sending us back home for a season. We are grateful for the opportunities to serve you Father and for the opportunities to be with family again. We love you Lord and we trust you. Please help us to remember that when the sadness comes on...You are the author of our lives and we are merely the blessed ones You are directing. I pray that God will make a way before us. Clear the path Lord that You want us to be on. Help our necks not be stiff. Help our eyes to see and ears to hear. Help our hearts to love and be willing to go.

In Jesus Name,
Amen

Short Move to Missouri

I grew up as you know if you've read my other blogs on a ranch, very active. I used to eat a lot. I didn't know it then but it was my way of stuffing my feelings. The only thing is that back then I worked hard every day and so the extra calories may not have been so extra.  My Dad would call me "hollow Leg" sometimes. His little way of teasing me about my ability to eat and eat. As I got older and had more responsibility at home because of my Mom's constant absence, I started to eat less and less. At one point my Dad literally made me sit at the table and eat while he watched because he was afraid I was "catching anorexia" as he put it. (I love my Daddy and his funny expressions).

By the time I got into high school I still cooked dinner for my Dad and sister 4 nights a week. 2 nights a week were my baby sister's turn to cook and every single week on those 2 nights we had; hot dogs and french fries and then the other thing she cooked was this stuff my older sisters and brothers and my mom called "macaroni surprise". Basically it is macaroni, tomato sauce and grated cheese. I hated it and still do to this day. The last night of the week for dinner was my Dad's job and his dinner night if it was on the week of payday for him we would go out to eat at a seafood place in Atascadero that had all you can eat shrimp night every Wednesday. If the week wasn't a payday, Dad would make either breakfast for dinner or.... whatever was left over in the frig he would put into a skillet and mix it together with seasonings. It looked gross and I think it was left over cooking skills from his days in the Navy. He called it S.O.S. (Shit on a shingle) as he would put toast with it for us.

I was working at Kragen Auto Parts and actually climbing the ladder there. They had me working at 4 different stores in the same county and all of the supervisor's wanted me to come to their store full time as a 3rd. My baby sister had moved to Missouri to live with my Mom when my Dad remarried my Step mom in 1983. During the summer of 1984 they came to California for a visit. I missed my sister so much. I had been using any kind of numbing device I could get my hands on except food. One of my bosses told me he would pay me to have sex with him. My outlook on mankind was really bad. This was not only a married man but he had a little girl and a brand new baby boy.  He would grab his crotch area and tell me that just looking at me makes him hurt. It was some serious sexual harassment but I felt like it was my fault or I was doing something wrong. I felt like I was not needed anymore anyplace. My Dad had someone to take care of him now that cooked every meal and made every lunch. I was just not necessary.

While I was visiting my baby sister and Mom at my oldest sister's house, my mother saw that I was taking pills and she blackmailed me into going back to Missouri with her by telling me she would tell my Dad I'm using drugs if I don't come with her. I didn't want to break my Dad's heart and I knew that he was being taken care of now with my Step-Mom. So, I went. I knew that it was for me literally like getting into the car with the devil. Not to say my mother was the devil but she and I absolutely did not get along. Even for a minute. We argued about everything and when she said something crazy I would call her on it which would cause a problem.

The drive to Missouri was hell. I was persona non grata in this car. Baby sister didn't want her hair to blow or look bad so we couldn't have  the windows opened. My mother said it cost too  much to have the AC on so we drove in a hot car through the CA, AZ, NM deserts sweating like crazy. When we got to Texas I was so screwed up without my pills that I couldn't sleep. I was wide awake in Amarillo and my Mom and baby sister wanted to stop for the night there. I remember them sleeping in the motel room and I tried to sleep but I got up and like a typical stupid 17 year old I walked the streets around the motel room which was next door to a truck stop. I was so heartbroken and lonely. The rest of the trip got a bit better because the air cooled off a lot as we got closer to Oklahoma. I was really enjoying the scenery and the new places that I'd never seen. I was intrigued by the "Turn Pike" and how you absolutely can't get off of them. It was strange. I remember as we were driving through Oklahoma heading towards Tulsa there were things on the road all scrunched up. Dead animals of some sort. Finally after some heavy scrutinizing, I realized these were tiny little snapping turtles trying to get across the road. I remember asking my mom to stop so I could get one of these darling creatures and save it's life. But on we traveled. No stopping on the turn pikes.

We finally made it to my mother and sister's house in Missouri. It was a mansion. I mean the kind of mansion you would see in the old south like on a plantation. It had huge columns in the front that you couldn't even wrap your arms around. The steps were grand and everything in the front of the house was grand and instead of a living room like we have in CA or a family room they had a parlor. My mother was so desperate to get to know her brothers and sisters that she didn't grow up with in Missouri that she invited one of her brothers and his family to live with her and baby sister in this mansion. My mother and baby sister lived upstairs and the Uncle and his family lived downstairs.

Upstairs was 6 bedrooms, a kitchen, a bathroom and a "sitting room" The first week I had my own bedroom but I was so lonely that I moved my bed into my baby sister's room. Downstairs was 3 or 4 bedrooms, the Parlor, a dining room, a kitchen and a family room. Along the back of this house attached to the family room was a screened in porch the full length of the house.

Within hours of getting to Missouri my Uncle who was a deputy sheriff for that town, took me to a park and asked me to go to a group of young men that were standing in a circle and buy some drugs. I was shocked because I hadn't ever bought drugs. The pills I was taking were over the counter sleeping pills. I told him that I don't take drugs and he told me, "everyone knows that CA is the land of the fruits and the nuts and everyone there does drugs". Thus started a very bad vibe between my Uncle and me. He was obvious in his dislike for me as I am a traitor to his sister by staying with my Daddy. Anything that went wrong in the house he blamed me. I would tell him I didn't do ... but he wouldn't believe me. I decided since he thinks I'm such a pain in the butt, I will be one.

I started to do silly teenage things to get back at him. I taped maxi pads on the back of his police car spelling out "PIG", I would ring the doorbell in the front of the house and run to the back when I knew he was sleeping. I wasn't allowed to eat any of the food there without paying for it which meant I had to get a job. There was no minimum wage in Missouri at that time and I found a job as a busboy at a nice restaurant in town for the evenings. My mother refused to allow me to drive her car the 2 miles to work or pick me up and take me. It wasn't the fact that it was far but it was when I got off work at 2 a.m. after the bar/grill closed I had to walk home in the pitch black night right past some seedy railroad tracks. All time time when I talked to my Daddy in CA he told me he would gladly send me money to come home. I kept telling him nope, I have a job, I got myself into this place and I will get myself back home.

So, my $2.00 per hour job plus tips if the waitresses were nice, landed me about $125 a week. Now my mother wanted rent money from me. She said I can't eat the food anymore unless I paid for it. I whined and fought with her about how unfair that was because Baby sister didn't have to pay anything nor get a job neither did her brother and his family. She wouldn't budge so I started to eat one meal a day at the restaurant where I worked for free.  I refused to pay her rent until someone else in that house started to do that too. Our relationship went from bad to worse and I honestly spent barely any time with her while I was in Missouri. I mostly worked every shift that was available to me and tried to save enough money to buy a plane ticket home.

After living there for about two months time, I asked my baby sister what was inside of a building right next to the house. She told me it was where Buster was kept. I asked her what is Buster and she told me it was my Uncle's patrol dog that he used to walk the beat with. A Doberman Pincer. I went into the garage to see Buster as I love dogs and I was so horrified and shocked at what I found in that garage. Buster was rail thin. Bone thin. He was standing in about a half a foot of dog crap. He was chained to the wall and had zero water in a bone dry water bucket. Zero food. I asked Baby sister where his food is and she said he doesn't have any. We are not supposed to mess with Buster as he is Uncle's police dog. I was furious!!!!! I went into the house and grabbed my mom's car keys with her yelling at me for taking them. I told her I'm going to the store and she better not mess with me. I went to the store and bought a huge bag of dog food, soap because he had flees and ticks so bad and some dog treats. I drove back home and fed him way less than he should get because I didn't want him to get sick. I gave him water, again giving him way less than he wanted but knowing he would make himself sick with it. I unchained him from the wall and pet him and bathed him and let him out in the sunshine. I started the job of cleaning up the crap he was standing in and it took me most of my day off. I was so furious. I decided that this dog needed to escape this house so I called the police dept and asked if animal cruelty is against the law in Missouri. The lady at the other end said it was and she took a report and said she would sent an officer out to the address right away. Lucky me, my Uncle was on duty that day and he was the officer they sent out to the location. He was furious but so was I. I knew that this dog couldn't stand up for himself so I just got ready for battle.

My Uncle gets out of his police car and unbuckles his pistol slot (ya, you may need to shoot me cause I'm gonna tell on your ass went through my head). He walks up to me and says, "Is there a problem here?" (I think okay, he is going to pretend that he is clueless so I will play his game).

"Yes officer, I'd like to file a report of criminal animal abuse. I tell him that I have lived in this house for 2 months and have never seen anyone go into this building to feed or give this dog water or any attention and he was flee/tick ridden and starving and standing in his own crap chained to the wall!"

My Uncle looks at me as mean as he can and says, "you are nothing but a no good trouble making pain in the ass just like my sis says you are!"

I didn't flinch. I gave him the evil eye right back and said, "be that as it may, in the land of the fruits and the nuts we have enough sense to know that an animal is supposed to be cared for not thrown away and starved."

He pulled his wallet out of his pants and through a business card at me and got into his police car and left. I didn't move until he drove away. Buster my new best buddy was licking my hand as if to say... "my hero." I pet him and told him I'm  in for it now bud. lol. I reached down for the business card he threw at me and it had a phone number on it for kennels. I immediately went into the house and called the number. I explained to the man exactly what had happened and he told me he would come and take a look.

I waited outside with Buster playing with him and giving him water and petting him. A truck drove up with an older man in it and when he got out Buster went nuts with happiness. Buster obviously knew this man. The man came over to me and said to the dog, "my God Boy what has he done to you?" I told him the story again and he thanked me over and over for calling him. He said I saved Buster's life and I told him in a joking way, "my name is Annie Salgado and if you read about my death in the next few weeks you will know who to go after." I laughed at my little joke but I was a bit afraid of the anger my Uncle showed. The man took Buster home and I gave him the flea soap and dog food too.

I went into the house and showered and was a bit defeated. I had spent all of my hard earned saved money for my plane ticket home on the dog.  I called my Dad in CA to tell him about the dog and what had happened. Again he said he would gladly send me the money to come home. Again I declined telling him I got myself into this stupid mess and I will get myself out of it. I spoke to my Step-Mom who is really like a mom to me and she told me that my income tax check had come in. I asked her to please open it and see how much it was for. She told me it was for $350 and would I like her to mail it to me? Oh my gosh.... yes please. I knew that a plane ticket to LAX in CA was around $280 at that time. It seemed like forever but I kept working and a week or so later my money came. I was able to go into a travel agency and buy my ticket home to CA. After that I went right next door and bought the a really cute pair of grey cowboy boots. I was going to be going home in less than a week's time!

The day I left Missouri I woke up really early with excitement. I was almost floating with joy. My mother had agreed to drive me to the nearest airport which was in Tulsa Oklahoma. I was packed and ready to leave and I was sitting outside by the car waiting for my mom to come out. My Uncle walked outside when my Mom did and he said, "well kiddo, we're sure gonna miss you around here." I am not a B.S. type person so I looked right at him and said, "you know that is a lie. You know that you are as happy to get rid of me as I am to be leaving this hell hole." He said, "ya, you are right. We don't like you much." I just snorted a laugh at him and got into my mom's car.

The drive to Tulsa was way different then the one when we drove to Missouri 3 months earlier. For one thing, My baby sister wasn't in the car. She stayed home to go out with some of her friends. It was just me and my mom for 3 hours. 3 hours of almost absolute silence. She pulled into the Tulsa airport and popped the trunk of her car. I told her I love her and thanks for everything and I said I'd come around her side to give her a hug after I got my suitcase out. I went around the back of the car and got my suitcase out of the trunk and closed the lid. The second that the trunk closed, my mom drove off like a bat out of hell. I felt tears coming to my eyes but I swallowed them down like I always did. I grabbed my suitcase and walked into the Tulsa airport in my new cowboy boots for my first airplane ride ever to get back home.

When I landed at LAX in California things were different. I got off the plane and my Daddy was eagerly waiting for me along with  my brother in law Ken. They both hugged and hugged me and said they missed me. It really felt like I came home!

Summer stuff

Growing up on the ranch was such a delight. For all the hard work that had to be done there were things that were amazingly wonderful. No TV except NBC and we were not really into sitting and watching TV when there were so many wonderful things to do outside.

During the summer was some of the best times in my life. Number one reason is I love, love to swim. More than any other thing in the world well, I kind of love to fish too. Anyway, Summer was swimming time.

I still woke up at the same time as I did during the school year because the animals were not on a summer break eating schedule and my Dad had to be out the door to work before 6:30 a.m. for his 7 a.m. check in time at work. So, his lunch had to be made.

Being very athletic one of my favorite things to do was to go hiking. We had our boundaries that Dad had given to us. If my mom lived with us those boundaries got wayyyyy smaller. She was always afraid of the huge ranches beside us and that there was someone watching us.

Baby sister and I would pack a lunch of cold cuts and crackers and water. We would set off across the field. No need to take a road if you are traveling by foot. One of our favorite places to go was about 3 miles from our house. You had to get there by trespassing but to us no body lived on any of that land so the NO Trespassing signs just meant we can't camp out there or build a house. lol. So we would climb under barbed wire fence, over trees, across fields with tiny Indian paintbrushes, Johnny Jump ups, Shooting stars and every kind of wild flower that grew in the California sunshine.

We always carried a stick each. A long walking stick. That was our protection from the ever present rattle snake or any unfriendly dogs that might come across our path. We would walk and walk between hills and way back into the hillside up a little high was a building. This building looked like a bees nest in a way. It was made out of plywood and all over it there were beer bottles sticking out. They were purposely placed in the wood. As little girls we couldn't understand why anyone would do that but when we took our dad back there on a hike one Saturday afternoon and showed him he said it was to let light in. Baby sister and I would go inside it and pretend we were pioneers like Grizzly Adams.

We would sometimes go further up into the hills and we came across a huge oak tree. All around the tree there were things for comfort. Like a hammock. There was an old parachute that was hung up over parts of the oak tree seemingly for shade or maybe to help break the wind. There were crates that had locks on them and boxes. A firepit. all of these things helped baby sister and I make up our stories of the evil Cowboys that we were tracking. We always played that we were Indian (Native American) slaves that were searching for a family member that got captured. On one of our Saturday afternoon hikes with Dad we took him to the big area that looked like someone lived there. Our dad told us to never come there again without him. He said it was a hunting camp and that it could be very dangerous for us to be there during hunting season. He pointed out to us the empty beer cans all around that baby sister and I didn't notice before.

A bit above the hunting camp was a beautiful lake/pond. Just out in the middle of the top of the hills. I found this by myself and this is a place that I went to often when I was lonely. I would ride my horse up there all alone bareback and he was such a good horse. I could ground tie him (that means place his reins on the ground and he will stay). I would strip down and swim in the ice cold water and swim and sun and just have so much fun. That was when I was a lot older, like starting around 14 or so. That place still holds so much magic for me and I wish that I could go up there again just to see if I could capture some of the peace that I felt there.

One time Dad took Baby sister and I and two of our dogs on a hike. He was training one of his dogs. It was an Airedale and his name was Tiger. We were playing hide and seek with the dogs and our other dog named Fluffy would not leave our side. Tiger was curious to see what ever he could see. We were hiding behind a clump of huge sage brush and we could hear Tiger running around trying to find us. Suddenly out from the brush we were hiding behind ran a big old bob cat. Tiger saw it and started squealing like the puppy he was. He was running as fast as he could for home which was about 4-5 miles away. My dad called to him and you could almost see the look of relief on his face.

On these walks that we would take with Dad the treasures we found were amazing. the lessons about nature that we learned were priceless. We learned about Indian Soap, Saouco, Elm, so many things that you can use in nature to heal yourself.

I wish that everyone would be able to take some nature hikes with an experienced loved one like I was able to do. The memories made for me and my baby sister can never be replaced.

Smurf Veins

Since I had my heart attack and news that I was born with a deformity in my heart. I have done research on why that cardiologist gave me so little time to live. 

Here is what I've come up with, besides he is an idiot that thinks he knows everything.

I have tiny little veins and arteries in my heart originally he said they were totally ecluded. That was a reason for me to be on so many blood thinners before. If my arteries are ecluded and there is nothing that can be done, ie: stint, angioplasty etc. short of a heart transplant then my arteries needed to stay cleaned out. There is no known term for the deformity that I have so I have named them "Smurf Veins".  

So, fast forward to 2011 and I get a new cardiologist because my 2nd cardiologist retired. My new cardiologist is AMAZING! He reminds me of myself. Always on a mission and tons of energy even if sometimes my energy is on the inside. I have given him the same name that my sweet Fuzzyface, Joel has given me and that is Tigger as in Winnie the Poo's bud. So, Tigger did a 2nd heart cath. At the time of the heart cath my heart did beautiful tricks for him while he was watching. It did a thing called "Vasal spasaming" This is kind of like a cramp. The only problem is my Smurf veins don't have room to cramp up. When they cramp they close up. That is why I have Nitro with me always and have to take it almost always. A good thing came out of that 2nd heart cath in that Dr Tigger says my arteries are totally clear. Not ecluded! So that gives me time. Time to keep them clear.

This 2nd diagnosis was like the first in that I have "Smurf Veins", there is nothing short of medication and a heart transplant to help them. The good news is by exercising and  eating healthy, I can help my "Smurf Veins" to last longer. 

All of this is great news but the truth of the matter is that I spend so much time in the hospital that I have honestly lost track of the times. When I take my 3rd nitro I'm supposed to be calling 911 to come and get me. I have pushed the envelope a lot by taking 7 or 8 nitro just to get to stay out of the ER. I usually am put into the hospital for a night or two of a lovely nitro drip IV cocktail. 

I believe that my original cardiologist said I don't have much time to live because doing my own research on my issue I've come across medical things saying that if you have these vaso spasming and your arteries are ecluded your time left breathing is about 5 years max. The worse your eclusion the shorter your time. Seeing my arteries are so tiny he figured I'm a gonner soon. I used to be really mad at this Doctor but now I love him again and feel that he just made a mistake in his wording. I am sure that I'm wrong and I don't want to offend anyone but being Annie, my thought is that because he is not from this country he speaks with little emotion and severely. I took all that as him being an ass. 

So, "Smurf Veins" are not normally found until after the person is dead. I've read about athletes who drop dead on the court or recently a tiny little almost 5 year old girl was having fainting spells and they did studies on her and found that she has "Smurf Veins". They didn't give her much time to live so much so that the "Make a Wish Foundation" made her a playhouse castle and brought her Cinderella style to see if for the first time ever all decked out in a fancy dress and glass slippers. She wanted to be a princess before she dies. I think most of us girls want to be a princess before we die at some point. Whatever that may look like to you. 

Growing up I recall playing HARD. I mean like a boy hard. I was so competitive and would challenge anyone to a race especially in the pool. There were times when I was still and quiet (not many) but during those times I could feel my chest burn so much. It would hurt and squeeze the air out of me. I remember sitting on my Grandma's lap and crying and her rocking me and singing to me in Spanish and reading the Lord's prayer with me. I found out that my heart has tried to grow extra arteries and veins. On the outside of my heart there are little arteries and veins reaching towards the damaged part. Trying their hardest to give my body what it needed.

Our bodies are amazing and God had created such an amazing working machine. Sometimes we have to make hard decisions for that machine. For me it is usually do I go to the hospital or not. I know that sounds stupid but I hate the attention, the needles, the nitro and morphine that give me such bad headaches the next day. I hate being a bother to my family as the worry and pray and wonder if I'll make it this time. I hate to bother the nurses with requests for water or to get up to go to the bathroom because they won't allow me to go alone when the nitro is going due to blood pressure being too low. I hate the tests, X-rays, stress tests, cat scan machine. The nasty nuclear medication that goes into your veins so they can see what is going on in your heart that makes you feel like you peed your pants. In all those things I hate, I love that God shows me I'm not in control... HE IS! I love that I have time to listen to what is going on around me, to hear the needs of other patients and to pray for them. Pray for their healing and for their salvation if they don't know Jesus. I love that one way or another..... I get to go home. Either in my bed with the love of my life, Joel Walker or to my Savior for eternity. 

Life Changed in an instant.

It is truly the middle of the night and I can't sleep. I've taken two nitro under my tongue knowing the rules about the 3rd one and you are on your way to the hospital via ambulance. I know the routine.I'm also sure that I'm going to ignore it like most other times. 

My oldest sister thought it may be helpful to me if I  were to describe my heart condition and how it feels every day to live with it. So, I guess I will do that for her.

When I first found out about this heart abnormality I was shocked. I was in school to become a water aerobics instructor and lifeguard for the Kroc Center. My dream job, being around the water all day long and getting to motivate people to move their bodies.  The day after the tryouts for the lifeguard class I was getting ready to jump in the shower and started feeling odd. No other word for it just.... something wasn't right. I felt like I was having a hard time breathing like something heavy was on my chest. I proceeded to go to take a shower and decided against it because I honestly felt faint. I walked back into my bedroom not sure what I should do and the phone rang. I think this was God's divine intervention because it was a lady that I hadn't heard from in over 20 years. She was my old best friend's mom. She asked me how I'm doing and I told her that normally I am doing well but today for some reason I feel sick to my stomach and like I'm having a hard time breathing. She told me to hang up the phone that very minute and call 911. She used to be an EMT and knew something was wrong. I said would do it and I did. I hung up the phone and called 911. While I was on with the 911 operator, I started to have severe stabbing pain in my shoulder blades. Like someone was poking me with an ice pick. She told me that the EMT's are on their way and would I please put my dogs outside and unlock my front door. She said that she will stay on the phone with me while we are waiting but I wanted to call Joel. He has been my best friend and my husband for over 27 years not to mention my comfort and support. I called Joel and told him that the ambulance was coming and he was of coarse frightened but said he would see me at home or at the hospital. 


The EMT's came along with every fireman within 10 miles I'm sure and the big huge fire truck with the ladder. A couple of cops were there as well. They knocked on the open front door and I told them to come in. It was like a mob of people mostly men, coming into my house. They asked me specific questions about the pain and stuff and they hooked me up to an EKG. The took my blood pressure and said that the EKG didn't look that bad and my blood pressure was not that bad either 156 over 89. To me that was outrageous. I had recently lost 299 pounds and exercised about 4-6 hours per day. My blood pressure was never that high. They said they can take me to the hospital if I want or I can see if I can make an appointment with my primary care doctor. Something told me that I needed to go to the hospital. I suppose that the something that told me to go was the Lord. They hooked me up to monitors and oxygen and wheeled me outside. God Bless my elderly neighbors 2 sets of them were outside to see what the deal was. They asked me if I need anything and I asked to please tell Joel I love him and that they are taking me to Kootenai Medical Center in Coeur d 'Alene. 

The ambulance driver was a guy but the two working on me were women. They carefully undressed me and put stickers all over my chest and hooked those up to monitors. They started and IV in my arm and I noticed that I was having more trouble breathing. The heaviness that was on my chest was getting heavier making it harder to breath. I was also extremely nauseous. They made me chew up about 6 baby aspirins and sprayed some nitro spray under my tongue. They gave me an IV and put some zolfram in it for nausea. I passed out a bit on the way to the hospital because the next thing I remember is they were wheeling me into a room and there was my sweetheart, Joel. 

Once at the hospital they took lots of blood tests and the first set came back with a highly elevated troponin. That is something that is in your blood that lets the medical staff know that you are having a cardiac event. They said it looked like I had a mild heart attack and that I would be needing to have a procedure in the morning called a heart cath where they go in through your groin artery and up into your heart to take a look around. During this time I remember that my heart beat was really wild. Slow at first then fast, fast, fast then next beat it was down to like 40. It was alarming out and there were nurses coming and going from my room. Joel was by my side the whole time and I asked him if something happens to me can he give my baby sister my Bear named Bearfriend that I'd had since I was about 2 1/2 years old. He teared up and said to me, "is it okay if I keep Bearfriend." I didn't realize how hard this was on my man. Here he thought things were going well, I'd lost 299 pounds, exercised regularly, in school to make a career out of helping other people lose weight and bam. 

The next memory I have is of my niece, the one that my oldest sister gave me. She flew to be with us. It was such a comfort to her Uncle Joel and to me as well. She stayed in the hospital room as long as they would let her. Late that night my Dr. came into my hospital room and told me a little more about the procedure he would be doing on me the next day. I asked him if I should be scared. He said, "no, this is routine and I have no doubt in my mind that someone who eats well and exercises like you will have something major wrong with their heart". I felt relief and he told me he'd see me in the morning.

The next morning I was barely awake as they took me to the basement of the hospital where they keep the heart cath lab. It was freezing in there and within minutes I was asleep again and woke up to some light talking. I recognized one of the voices as my cardiologist even though they had their masks on their faces. I heard him call the other cardiologist over to take a look at what he was seeing. I was trying to look at the little TV screen but didn't understand anything that was going on and I fell back asleep very quickly but not before I heard my cardiologist ask the other cardiologist if he sees the same thing. The other cardiologist said yes that it was totally ecluded and there was nothing that can be done. 

I woke up in another room with my niece standing at the foot of the bed and Joel and the foot of the bed and my cardiologist on the right side of me standing beside a little monitor. He showed me films of what he had done and where he had looked around. All the while that he is showing me this he is telling me that I will not live a very long life. There is nothing that can be done to fix my issue and that I can no longer swim where there is no lifeguard, No more being a water aerobics instructor or a lifeguard, no more vacuuming, mopping, snow shoveling, raking, the list went on and on. I was trying to wrap my head around all of this and it felt like the rug was being ripped out from under me as I was standing on it. I was so sleepy from the Verced that they give you and they wanted to take me back up to my room but of coarse I had to pee really bad. It had been an hour since my Heart Cath so they thought it would be safe for me to go into the bathroom. I walked the short distance into the bathroom and peed then came back to bed with blood dripping down my thigh and leg. That meant the blood clot in the artery was not clotting. So.... a nurse with some major arm muscles pressed on that part of my leg for over 15 minutes. Then she would rest a bit and press again for another 10 minutes and so on until it stopped bleeding. They got me cleaned up and sent me upstairs to the Cardiac Pulmonary unit  or CPU. They put me into a hospital room and I was on some pain killers and they were giving me shots in my belly of some horridly awful medication that hurt like a yellow jacket sting. It is to thin your blood.  I was put on about 19 different medications all to do something for my failing heart. I was so dumbfounded by the cardiologist's words.... you won't live long and you'll never.... fill in the blank.  

When Joel and My niece got up to the room and the cardiologist was in there Joel asked the cardiologist, "Dr. ___ if she continues to eat healthy and exercise she can live a long time like this right? The response from our cardiologist was, "no, no, I'm sorry to say there is nothing that can be done and she won't be around much longer". With that, he left the room. A little old lady in the curtain next to me said, "kids, can you open the curtain just a bit for a minute?" Sure, Joel opened the curtain and this little old lady told us.... "now you remember who is in charge! It isn't that Dr. that just left your room with the bad news! It is God, the Creator of Heaven and Earth. He is the only one who sets the days of our lives and the hours we have to live them!"  We thanked her and prayed with her and she was a total blessing to us. 

My best friend Tari came to see me and in my I'm a stud sort of way I told her not to worry that it was just a little old heart attack. Little did I know that my life was going to change forever! 

Upon Discharge from the hospital the nurse's aid brought in some prescriptions with her that I would need to have filled immediately. One of them in particular she told us was very pricey. I asked her how pricey and she said about $175 per pill. I told her she can just put that prescription in the trash that I won't pay that much. That I can't pay that much. She left the room and came back with the correct amount. It wasn't $175 per pill. It was $175 per month. Better but not much considering the other 18 prescriptions that I had been put on at the same time. They would all add up and quickly. Upon my discharge, my new life had started like it or not. Things were going to be way different for me and my family from then on!   

I will write more on this at another time but I am very cold and need to stop writing for now. Remember what my little old lady neighbor in the hospital said, God has your day's numbered not any physician!