#147 Thank God my nurse works night shifts

Yesterday I wasn’t doing very well and I was in a terrible amount of pain. Normally I would be able to push the button on my IV pain meds and then I would feel a little bit better. When I push that  button it gives me a whole hours worth of pain meds all at once. I know that I have a nurse coming this morning to set up a new IV bag so I figured I would just wait for her to come and tell her that my pain button wasn’t working for the extra pain meds. I guess it was about 9pm last night when everything on my IV meds quit working at all. The only pain meds that I take are in that bag so I hadn’t been getting pain meds for hours before I knew what was happening and I had to call my nurse late last night to ask her to come to my house right away and fix it. She was yawning when I was telling her on the phone what was happening, but she came right over.

I told her that I was really sorry that I had called her at home after she had worked all day but she made me feel better about calling her. I like my nurse…she understands what the pain can do to people. She ended up having to take the needle out of my port and insert a new needle and luckily the new one flushed perfectly. I was in so much pain by the time that she had it working right again that I actually felt the pain meds go into my body, normally I wouldn’t feel the pain meds at all. I asked her why that would happen and she said that I was moving around too much. I hardly do anything at all and now just taking a bath is a big deal. I don’t know how I can do less that I already do.I think I’ll spend my time watching a movie this morning so I don’t try to clean anything because I know I’ll hurt myself if I do. I do have a box of M&Ms and a pot of fresh coffee to comfort me.

My best friend Daine was here for days doing dishes and cleaning my floors so I think that just watching her do all the work that she did was what hurt me. I did probably do one or two things without realizing I was doing anything at all because she was doing so much. I don’t know how she has put up with me for twenty seven years (I think), but she’s the only reason that my house looks as good as it does. Thank you Daine! I hope you’re coming back soon, but for visiting or watching a movie or something.

 

#146 Humility, my own lesson with it

My take on life is most likely not what everyone else sees. Things that used to be very important to me are way back in the background, and different things are up front now. First lets take my morning routine. I wake up a little later now than I used to because I get up every few hours throughout the night. After each four-hour ‘nap’ I try to do one or two things that I would have before waited for the afternoon to get working on. Then there’s sleep its self. I have to take pills for this that and the other(right now I have pneumonia again) that usually makes me a little sleepy so the four-hour sleep thing actually works out fine. I would have thought that only sleeping in four-hour intervals would make me tired all the time, but it gives me a little bit of time after each four hours to do a few things. This morning I woke up and had a cup of coffee and read a few pages of my book and decided that I might have enough energy left to knock out a quick post.

I know I’ll have to write it quickly because I’m already getting tired, hopefully the coffee will help with that so that I can stay up a while longer. I have my M&Ms too so one more cup of coffee and I’ll be fine . I have a friend who I haven’t seen in a few months that showed up a few days ago and wanted to know if it was all right if she came to stay with me for a while to help with all of the housework and to keep me company. It’s nice to have people come over to see what they can do to help us out. We need help all the time so we have friends coming and going throughout the days. Some just come to keep me company and those are the ones who can’t help with any other needs. I think that kind of help is so precious. I’m not one who normally likes to have a lot of people around the house because I’m embarrassed that my house isn’t always clean anymore. That doesn’t seem important these days. I told her that she’s welcome to come and help out for a while. She should be here sometime today.

Then we have the bills. I can’t ever find the words to convey how embarrassing it is to have to admit that we can’t make ends meet anymore. I’ve always hated having to admit that we need help but I’m putting my pride away and asking for help in different ways. First we just signed up for state services for food and health insurance for Rick, he needs to be able to keep taking care of his heart. He went for over a week without taking his heart pills and never told me because he knew we had no way to come up with enough money to pay for his meds. We now have decided that we can’t just go without some things.

I’m setting up a way for people to help us financially if they want to. I think Elaine is working on a way for people to help in different ways. Some want to mail a check and some want to pay bills directly, and some just want to send cash or a money order. Elaine will make sure that if you want to help financially then it will be excepted in whatever form you wish. I think that letting people send us money is right up there at the top of embarrassing/humiliating. I’ve come to accept that it’s alright for me to say when we need help, and boy do we need help! Like I’ve said before we have helped so many other families when we were able to over the years and I wish I knew how hard it was for the people we were helping. I always just figured that they were happy to have some financial relief and that was the end of it. Well, that is so not the end of it. I remember feeling so happy about giving people whatever they needed, but I think that now its my time to learn how other people feel about having to except charity. Thank God we’ve never had or used credit cards, I don’t like to make payments on things, so if we didn’t have the cash to purchase anything we just saved up for things.

I think that I missed this entire Christmas season because I did everything but hide in my bed to stay away from people. I wanted my family to have a good time, but I think that I could have helped to make it a better holiday, even without any money. I know that my mood swings are coming from all the meds and the pain I’m going through. I’m so used to having a lot of pain but this is way more than what I’ve ever had to deal with…and it’s only going to get worse. I did finally get my mother to agree to take me to make my final arrangements while I’m able to have a say in everything. Of course I have a long time to go yet but I didn’t want to wait until I can’t go with the family to choose what I want. Rick and mom need to make theirs as well. I don’t think that anyone should wait until their too sick to go and have a say in their own final wishes.

I might think about things differently now but it’s only because I don’t want all the difficult things left for other people to take care of. My muscles are all very stiff when I wake up…every time I wake up, but then it gets a little better as I get up and move around a little bit. I get very excited when I’m able to finish any chore on my own, and I make sure that everyone in the house at the time knows that I accomplished something on my own. Here is a recent pic that was taken just hours before my sister Elaine left to go back go back to NC.:

#145 I’m still here…I think?

I had the most pleasurable stay in my new Hospice inpatient unit lately and just arrived home Christmas day…I think. I don’t remember things very well anymore so if you need info on anything that is important, for God’s sake don’t ask me. I was having uncontrolled pain so the hospice team thought that I should be under their care at a facility that I know was supposed to be in kind-of-a hospital setting…but it was really more like a resort.

I was in such terrible pain when I arrived there, and it took an entire day to get the Medical Director in there to see me (he thought he should be the one seeing me because all of my prior medical issues with getting the right treatment) and then I waited hours for a nurse to come that was trained to hook up my port to give them IV access. It seemed then like it took forever, but considering what they were able to accomplish, it was a very short time after all.After all of that and a few more hours to have the meds delivered…they did it. They knocked down my pain level to a level that it hasn’t been in years. I’ve told you all about the tumor pressing on nerves (my own conclusion by the way) but when I told the Medical Director where all I was having pain he said that I was absolutely right.

It’s not often that any Dr would agree with me but this one did a through medical exam and after feeling the tumor he actually said “Oh my God! that’s way bigger than on the scan” Finally someone listened to me and understood that I knew what my future was looking like. It only took a few minutes for him to decide to give me the only medicine that has ever work on pain for me and he ordered that I have a Patient Controlled analgesic pump. He actually told me he was going to give me higher and higher doses of it until I felt better. I didn’t want to be in a haze and he didn’t want me sleeping all the time so we found the right amount that worked for me.
Now I’m home again. I did have to go in another time to increase the dose, but I think I’ve found the right amount of medicine to continue to let me function.

Now, when I say function, I don’t mean doing anything that takes much energy at all. I’ve had to have a hospital bed brought in because I can’t climb the stairs in my house without hurting myself.
I keep trying to do more around the house but I only end up hurting myself.My sister Elaine has come from NC to help out for a few weeks and my friend Diane has been here a lot decorating and cleaning.

This month I’m focusing on trying to raise money to pay some bills that I just can’t put off anymore. I did manage to get together enough money to pay all of the household bills…now I have to get my car paid for. I own my car free and clear…However it has a repair that has to be done before I can take it to get current registration. Rick called the insurance company to let them and the department of motor vehicle to let them know that the car isn’t being driven because of repair issues.

I’m trying to find a way to set up a legitimate bank account for people to donate into (so they know that this is all above table). I’ve done fund-raisers before but never for myself, so I’m at a loss as to how to start it. In the past I would always choose families for Christmas or friends of our kids’ families and have car washes. Now I know how it feels to have to ask for help, and it’s a horrible gut wrenching feeling that I don’t wish on anyone.
Hopefully it isn’t too late to talk to Santa?

#144 I’m about to lose my mind!

I’m still really sick from changing my pain meds and I’ve been trying to sleep as much as I could, but I keep waking up every two hours in pain. I know that I’ll be better soon but when you’re in this much pain it’s really difficult to be patient about it. Rick and Mom took care of Thanksgiving and I pretty much just tried to stay out-of-the-way. I guess it’s better than last year when they had to bring me dinner in the hospital. I’m trying to look on the bright side…but it isn’t very easy right now. I’m so sick and tired of being sick and tired. I feel like I can’t do a damn thing anymore without having to pay for it for days afterwords. I wanted so badly to have the house looking nice for my family to come here for Thanksgiving  dinner, and I didn’t do that much, at least not enough to put me in the shape I’ve been in since then. My whole body hurts, and I know that some of that is from switching my meds, but just for one day I would like to feel healthy.

 

I was looking forward to getting the last check from worker’s comp so we could pay for the bills far enough ahead for Rick to start getting a paycheck. Because Rick had been released to go back to work we expected a final check from worker’s comp, but it was nowhere near what we thought it would be. I honestly have no clue how we’re going to get through the next month. Rick is out right now trying to find a job that he can manage without hurting himself anymore than he already has, but we didn’t know that he was going to be cut off like he was. On the bright side, now we can settle the claim for the personal injury, and hopefully it will at least cover all the bills. I’m not even thinking about buying Christmas presents anymore. I’m more concerned with just getting by. I don’t even have the heart to put up the tree. I had planned to put it up days ago, but I could barely move so I figured I would just wait until I was feeling better. So much for feeling better.

 

I know Rick will get hired on quickly with all the experience he has under his belt. I just can’t believe that all this shit happens to us. I’m starting to feel like the universe has it out for me. With any luck at all we might get the settlement money from the accident before Christmas. But with our luck the attorney’s fees will be more than the settlement. Just another case of truth being stranger than fiction. Rick told me not to worry and that everything would work out fine, but at this point I’m having a really hard time not worrying. I probably shouldn’t have put all of this in my blog, but I’m stressing about it and this is how I process everything. I hope nobody reading this was looking for a happy post.

 

I just found out about the worker’s comp check (or lack there of) so maybe I’ll be in a better mood later, but right now I don’t think I could take anymore bad news. I’m all out of sunshine! I think that considering my situation I need and upside down pink tree…it seems so appropriate.

 

 

#143 Yep, I’m still here

Even though Rick has been in a tizzy about getting his pc to work again I really didn’t want to miss out on my morning posts, luckily my lovely daughter suggested that I use the laptop that we gave her last year for Christmas to be able to write my posts with. Jesse can be a huge pain in the ass sometimes, but she also is the single most kind and generous person I’ve ever known. When we bought her this laptop we also bought two others for Justin and Ashley. And because we aren’t rich, we went to a reconditioned laptop store and were able to get all three, with new cases for less that we would have paid for one brand new one. All three kids were happy though because we had been telling them that there might not be any presents under the tree at all because we were hurting so badly financially. Rick would sell a kidney to be able to give our kids what they want for Christmas, but as they get older the presents seem to get more expensive…go figure.

So this year Rick and my mother want to have the holiday family get-together at our house. I tried to get out of it because I would have to go over my house with a fine tooth comb just so that I’m not embarrassed to have family here. Don’t get me wrong, they would probably not give a shit what my house looked like…it’s all me. I did manage to get the entire downstairs cleaned to my satisfaction, and then I spent the whole day yesterday trying to nurse the pain I had caused myself by doing things like reaching up with a swiffer duster while standing on one leg with nothing to hold on to just to clean my ceiling fan. Every time I touched the damn thing it started spinning around. Jesse and her best friend were told that they had to clean Jesse’s bathroom and the downstairs bathroom before I would give them the car keys to take all their friends skating. I still have to do a little more on the bathroom that Jesse ‘cleaned’,but at least she tried. She hates to clean.

This morning when the pharmacy opens I have to go and pick up my new meds. I haven’t taken this particular kind in years, but I do remember that one of the reasons that I didn’t want to keep taking them before was because they gave me way too much energy. Rick would have to demand that I sit in the recliner and take a break after six straight hours of doing chores. Now with as much as I need more energy just to do simple things, I’m hoping that it will work better for me this time. I do remember that it worked great for pain though so I can’t wait to see what happens.

Rick also told me yesterday that he wants to put up our Christmas tree today. I guess he wanted to have the house decorated before the family comes over. Last year he didn’t help at all, Diane and I had to do it ourselves while Rick watched TV pr played his games. To be honest I really don’t remember because I had my hands full of lights that someone had just thrown into a box. I am curious to see what decorations we have left. Every year more seem to hit the void. My favorites are the ones that my kids made for me when they were just old enough to be able to write their own names on them. I think everyone I know has at least one tiny little popsicle stick snow sled with glitter on it, and a red ribbon to hold it to a tree branch.
So today while Rick starts digging out all the Christmas decorations, I’ll be sitting in the middle of them all trying to figure out which lights are still in good working condition.  I’ll gently pick out the broken balls ans play where’s waldo to find enough extension cords to be able to plug everything in. I really don’t enjoy the process…but I love having the tree all lit up in the evenings leading up to Christmas. I also have a green and white wreath that hangs on my front door, this is the closest one to mine that I could find a picture of…except that my front doors are white so it looks really pretty. Happy holidays everyone. cin

#141 Canceling Christmas? I hope not

 

I never have been one to make a big deal about Christmas…but Rick waits all year for it so I try to go along with whatever he wants to do. We did get some very exciting news yesterday that is going to make the holidays much happier for my family. We didn’t win the lottery or anything like that, but we did find out that our lives are about to start getting back to normal if all goes well from here on out. After Rick was hit by a car while unloading his truck at work we had to get a lot of lawyers involved. Three different firms have been helping with getting him the compensation that he deserves, as well as all the medical treatments that he’s had to have for the past few years. A few days ago we found out that worker’s comp wanted him to go back to work and they also agreed that he has a permanent partial disability that will limit what kind of work he’ll be able to do for the rest of his life. I know that I mentioned in an earlier post that Rick thought he might like to go back to working in management of a telemarketing company, and he also wants to work some place where he can put to good use all the experience that he has from being in a truck. Now he’s able to start actually going on interviews. Yesterday his own Dr agreed that Rick is able to start working again, as long as he starts off only working part-time with limitations. We were told that for the first six months he’ll have to also go to physical therapy and have massage therapy to help with the pain of getting used to a work setting. What was funny was that both when the nurse walked in, and then also when the Dr came in, they both came straight to me, took my hand, and asked how I was doing. Rick finally said something after the Dr did it too. Sorry babe, but I’m just more important. jk 😉

 

We really thought that this was going to be a very sad Christmas because we simply won’t have any way to go and get any gifts for our kids…let alone all the rest of the family and friends that we would normally get a gift for. It’s not that we ever were rich, far from it, but we always managed to find a way to give a little something to everyone. The year before last my mother and I spent two weeks straight baking every kind of cookie we could think of for the family, and everyone else we could think of also received a nice dish of assorted goodies. Chocolate dipped pretzels were the easiest to make so I loved doing those. Mom likes to make candy so we also had a few hundred home-made peanut butter cups…a lot of those ended up at my house because they’re Rick’s favorite. But, last year we didn’t have enough money to buy all the ingredients to make as much as the year before, not to mention that I spent most of November and December in the hospital having surgeries, so I couldn’t help mom bake. I was released from the hospital after my mastectomy late on Christmas day. I missed all the good stuff. Rick did bring me a tiny little Christmas tree in the hospital with a few of my gifts from the family to put under the tree, so I know that I wasn’t forgotten…but it’s never the same as being home with the family. The nurses wanted to know if he had a single brother.

 

I doubt that I’ll be able to do much, if any, shopping this year, but I do have the knowledge that everything can and will start getting back to normal. I don’t have a clue how long we’ll have to wait for the lawyers to finish with all the final details, it usually takes another six months to find out what the end result will be. But in the mean time, Rick can get back to having somewhat of a normal life again. I love having the house to myself when he’s working, and I know that working makes him feel so much better about himself. None of this was in any way his fault, and I feel bad for him that he’s had to go through any of it. So this year Christmas, although it won’t be back to normal just yet, will be a time when we can at least be happy about life again. All the endless medical crap with both of us has definitely taken a huge toll on all of us, but now we have something to look forward to again. It’s been a long time since I could think about anything in the future and he happy about it. This year we have a Grand Daughter coming, Rick will be working again, and hopefully in a few months we can start slowly paying back all the family that’s been helping us, and if we play our cards right we might even be able to find a few small gifts for under the Christmas tree. This is the one that Rick wants to put up this year. He thinks that he can cut a branch of of out front patio tree and put his favorite little blue ball on it too. For the past twenty five years Rick has managed to hide a blue ball somewhere on the tree, no matter what colors I use for the rest of the decorations. He says it’s ‘special” to him. I think it’s funny.

 

Justin and Ashley made it to NC, where Rick’s little sister lives, and they’ll be staying there with her for a little while so that they can find new jobs and save enough money to get their own place after the baby comes. I do wish they had moved back to Arizona, but I know that they will be in good hands with Rachael. She always has done her best to help out all of her nieces and nephews when she could. She takes after her father in that way and many others. He was a great man. Rick is hoping that we’ll be able to go and see our Grand Daughter when she’s born, but I don’t know if we’ll be able to just yet. Like I said, it could be a very long time before we see a penny from him being hurt. But at least we know that this whole bull shit legal thing will be over soon. I just hope that I’m feeling well enough to travel that far. I walked a long way yesterday on my crutches to Rick’s Dr and now I’m paying for it this morning….but it was a well wort it trip.

#140 I’m healed? Ah…NO!

So, yesterday afternoon I was out side on the patio talking to Rick about his appointment Thursday with the lawyers, and I asked him what the date was. I never do know what day of the week it is and most of the time I can’t remember what day of the month it is either. He told me the date and I suddenly remembered that I had something to do. I looked in my purse for any appointment cards and found on from my pain center with a time of 1:45 yesterday afternoon. I called my mom and asked her to take me, because my car needs to have repairs done, which I can’t afford right now, and she made sure that I was there on time. Thank God for mom. I waited longer than usual in the exam room for the PA to come in, but I didn’t mind because he always spends a lot of time talking to me so I just figured that he was talking to someone else(I could hear him in the next room) and he would be in as soon as he could. When he came in he sat next to me and said “How are you doing?” I said “shitty,how about you?” He said the same thing, “shitty”. He wanted to know why I wasn’t doing well and I told him about how I thought that I was starting to have problems in my arm. I did have a lot of lymph nodes taken out when I had my breast amputated (I think the word mastectomy doesn’t do it justice), twenty-eight the last time and eight the first time. Even one being taken out can cause you to have a lot of pain and swelling in your arm. I haven’t had any trouble with it in this past year so I’m not convinced that it isn’t the tumor in my arm pit pushing on things that are causing pain all the way into my hand.

 

I watched for any swelling or anything like this before, but I never saw anything.  And, I’ve usually been able to get relief from the pain pills after I healed from each surgery. I’m a little worried that this is only the beginning of the problems with my arm.  Anyway, the PA wanted to change my meds(which he does every so often) and scribbled for a while on some paper, trying to figure out the correct amount of the other pain meds to equal what I was already on. I would have needed a calculator for all those math problems. After a while he gave up and went to go to the back office to speak to my Dr and ask him what he thought should be written. When the PA came back he was laughing. I asked him what was going on and he,still laughing, said that some Dr had called my Dr and told him that I didn’t have breast cancer…that he thought that it was a misdiagnosis. I wish I was a fly on the wall for that conversation.

 

When I was first diagnosed and still had all the tumors in my body I had to be admitted to the hospital for pain. I insisted after almost a week that they call in my own pain Dr because he already knew me and I trusted him. They refused until I started screaming in pain, and I also sent my husband across the street to the Dr’s office to tell him personally that I needed him and why. My own Dr showed up in my hospital room at about eight pm when he was on his way home for the night. When he came in he sat down held my hand and put his head in my lap and cried. He told me that no matter what happens he’ll be there to see me through this. I believed him then and I still believe in him now. He chewed out the hospital staff and changed the meds I was on and I was able to go home two days later. If he hadn’t come in to help me I don’t know how long I would have been there. I don’t have a clue what Dr would have called him unless it was the Medical Director at the hospice that I was in a few months ago who wanted me to have more scans and tests to prove what my prognosis was after I had my surgery. They do have to make sure that you qualify to be in hospice so I know why they wanted more proof. But, if they would have told me at the time what they were looking for I could have had the reports from the Cardio Thoracic surgeon and the pathology reports sent to them. I didn’t know then that they didn’t have everything.

 

I haven’t seen an Oncologist for about eight months now because I didn’t have any reason to go to one. I wasn’t having chemo and I didn’t know that I would need to be continually getting tested for something that doesn’t go away on its own. I made all of my choices clear to all my Dr.s and I figured that they would all talk to each other when they needed information. Anyway, my own Dr knew better than to believe that it was all a mistake and thought that the one who had called him and told him that it was all a misunderstanding was an idiot. I’m very glad now that I insisted on having my own Dr come to the hospital because he saw for himself that there was no mistake and that I simply wasn’t going along with all the usual treatments for IDC. Some people (including Dr.s) think if I’m not doing chemo and radiation that I must not have cancer. It only it were. I did ask my PCP to get me a referral for another Oncologist so that there wouldn’t be anymore questions about my prognosis. Just incase I need proof from now on. So now I start the new meds next week, I know that I’ve taken them before but I don’t remember if I had any problems with taking them. Hopefully it’ll help me without giving me any more issues to deal with.

#139 I just found out

I’ve been waiting, and not patiently I might add, to find out what my grandchild is going to be, and I just got off the phone with my son and his fiance. It’s a little girl! YAY!! 🙂 I had a feeling that it was a girl, but I didn’t want to tell everyone that and then be wrong. I figured that I would just wait and see. I love the idea of having a baby girl in the family. I do think that boys are easier to take care of, but it’s more fun to shop for a little girl. I was also told that the baby is to have my middle name, which I think is wonderful. Rose was the middle name of not just me, but also my great-grandmother, my aunt, my cousin’s little girl and probably a few more people on my dad’s side of my family that I’m not remembering right now. I don’t know for sure how the first name will be spelled so I won’t try to spell it because I don’t want to get in trouble for doing that. I have a feeling that this baby will have two wonderful parents tripping over themselves to make her happy…always a good thing in my book. Congratulations Justin and Ashley. 🙂

Rick has started making sugar cookies for us. Not for the holidays, just to snack on. I can’t remember a time in his life when he made cookies. I’m always the one who does all the baking, and every once in a while he would help me out a little, but for him to suddenly start baking took me by surprise. For his first attempt he did very well. I think they were as good, if not better, than the ones my mother and I make every year around Christmas. It can be very tricky to have a sugar cookie come out well. They weren’t dry and were perfectly baked( I did help with baking them), and I have to admit that I did eat most of them when he wasn’t looking. He wants to make another batch today, he wanted to do it last night but I talked him into waiting until the kitchen was cleaned so that he didn’t end up with a huge mess right before bedtime. I guess I’ll have to get up soon and start getting the kitchen ready for him to play in. He does have a habit of leaving flour trails every time he does anything where flour is involved in one of his kitchen projects.

 

I do have a few chores that I plan on tackling, and I’ve had my coffee and M&Ms already. My mom bought me a sharing size bag of M&Ms, but I have no intention of sharing them. I’ll share anything else in the world…but I can’t give up my sugar. I swear sugar is an addiction, probably one of the best kind of addictions for someone to have. I still have to call Jesse’s Dr to find out why he didn’t call in her meds yesterday, her throat is still healing very slowly so she still has some infection in there that needs continued antibiotics. I really hope that having the surgery will keep her from ever having anymore infections. I think she’s had enough of them to last her a lifetime.

 
It’s very quiet in the house this morning, so I’m enjoying it very much. So far today I’ve only seen Rick and the animals, Jess and Abraham are still sleeping. He’s the little boy that she’s been co-raising ever since he was born. He has to be the biggest three-year old I’ve ever seen, and he calls me Grandma Cindy, which makes it easier for me to have a little kid around. I normally don’t like having kids in the house because they move too fast for me and make too much noise…not to mention the messes they can make before you have time to stop them. But Abraham has become a part of the family and now I’m more used to having him here since Jess came back home. I know Rick just loves him to death, especially because they think very much alike. Rick freely admits to thinking along the same lines as a three-year old. We only have him over once in a while but he sure does take over the house when he’s here. I don’t have any idea how it happened but this young man looks exactly like my daughter…even more than he looks like his parents.

 

I went a very long time without any little ones around me, but it’s looking like I need to get used to the idea that my kids have grown into being parents themselves. I hope that I’ve done a good enough job for them to be able to do a good job too. Hopefully I can help them to make better choices than I did. I didn’t have a clue how to raise a child back then, and I flat-out refused to take anyone’s advice on how to raise my kids. I so wish that I had taken some of that advise because it would have made my kids lives so much better. I don’t want to over-step my boundaries so I’ll have to be careful about making sure my advice is welcome before I go giving my opinion. Anyone who knows me at all will understand how that might be difficult for me to do. Wish me luck. 😉

#138 My Writing, and Erma Bombeck

I’ve been told by someone who reads every one of my posts that I’ve been running all of my sentences together, and she’s right… I have. But I didn’t realize that I was doing that until she said something, so I wanted to make sure that she knew that I appreciate the constructive criticism. I’ll try to explain why I do that, as well as trying to learn how to write better posts in the future.

 

When I was a freshmen in high school I remember going the first day to a new school, I was picked on so badly that in-between classes I finally just walked off campus and never did go back. I was taken to juvie where I lived for most of the next year because I kept running away every time they tried to send me home. I wasn’t abused in any way and I had a great family. The problem was all mine. I don’t really know why I kept getting in trouble, but I did. The next year I started getting sick and was taken from juvie to a county hospital where I was told that I had bone cancer in my right knee. They also said that I was going to die, and they had nothing to give me to make me any better. They called my parents and told them the same thing over the phone.

Luckily, my mother isn’t one to just sit by when things go wrong. She’s more like me when it comes to my kids needing my help. Maybe I should say I’m more like her. She took me to a children’s hospital and a year and a half, four chemo drugs and one leg amputation later I was doing much better. My mother did make the school send me a tutor a few days a week, but it was so easy for me to make her feel bad for trying to get me to do any work that I managed to wiggle out of any kind of education. All I had to do was tell her that my leg was hurting and she would get up and leave, but she did always leave me homework to do if I was felling up to it. I’m not proud of what I did. I know I should have listened to her, and if I could go back and do it over again I would do so many things differently. I screwed myself out of any real education…and I didn’t even realize that I was doing it.

 

What’s ironic is that even back then I wrote all the time. I wrote short stories and poems and loved reading them to my dad. I remember reading a story that Erma Bombeck had written, and I decided to write one of my own that was definitely in her writing style. I think I still do that sometimes without noticing that I’m doing it. I haven’t read anything of her’s in more than twenty-five years I think. My father was sure that the style matched Erma Bombeck, and that I must have copied it from something that she had written. I had to go get the story that I had read, and give it to him, explained what I did and that it was my work. I was only looking for a writing style that I could use. I had no interest in taking credit for someone else’s work. He finally agreed that I hadn’t done anything wrong, and told me to keep writing whatever made me happy. And I did.

 

During the time when I was just barely finished with chemo my parents started taking me on trips. The Make-A-Wish foundation let me take my whole family to Hawaii for ten days on two different islands, we went to Disney Land in California, and I was sent to camp with the other ‘cancer kids’ at some point in-between. I had gone to Camp Rainbow the previous year, so when it came time to go again I was asked to be a Jr councilor. I think I was about sixteen years old at that time. I wasn’t told that we would have a guest there doing research for a book until we were unpacking our things in our cabins. We were asked to be very open and honest with this person and if we were uncomfortable with any of the questions we were asked we didn’t have to answer them. Most of us spoke very openly and honestly. You’ll never believe who our guest was…or maybe you will.

 

 

 

I Want to Grow Hair, I Want to Grow Up, I Want to Go to Boise (Children Surviving Cancer): Written by, my now friend, Erma Bombeck. I remember seeing her sitting outside the dining hall looking lost. They had us do things at camp like line up by group and sit at assigned tables, and we had to sing about Johnny Appleseed before every meal. So, I can see how an adult who had never been there would be confused as to where to go for lunch. She did talk to us as a group that afternoon in the lunch room and explained that she wanted to write a book about us. About how we get through everything having to do with being a kid with cancer…she wanted to see how we were able to keep smiling. She met with some of us, me included, in private. She didn’t ask a bunch of ridiculous questions, she just wanted to talk. She wanted to know everything each one of us had to say. What she found out was that most of us were sarcastic and loved to screw with people. Things like pretending to get hurt or telling stupid jokes…nothing funny was out of the question to us, and she picked up on that pretty quickly. She couldn’t believe that almost all of us had a sense of humor about being sick. Even the ones who knew they would die from whatever kind of cancer they had. My name appears on the first few pages along with all the other kids who were there that year. If I remember correctly, she also wrote about when I was asked at lunch if I wanted a leg or a breast when we were being served chicken…I was laughing so hard I don’t think I ever answered that question. I had no clue then that someday I would want both.

 

So, I still love to write about things in my life, but I never did get any real education having to do with writing because of my own issues. I so wish that I had continued my education. I was very upset when I found out that Erma had died in the 90s… 1996 I think. She was a great lady, and a wonderful writer. I don’t claim to have her talent for writing, only that she helped me find a way to write that made sense to me. Now, if I can only figure out where all the punctuation goes, I’ll be happy.

#137 I did it all by myself

Well I did a few things all by myself. First I found a way to fix this picture of Cali so that you can see what I saw in my kitchen window. I forgot to mention that she has thrown dirt out of this planter all over my garden window and I have to climb up on my counter to reach in there to clean it, so right now there’s dirt all over the place. I’ll get to it eventually. And, I cleaned my kitchen yesterday without anyone helping me…but I did have to take a break in the middle, and third I straightened up my front living room, although I still need to dust and vacuum that room and the others. I think I managed to accomplish a lot on one day…for me anyway. I didn’t even drink any more coffee than usual, but I did take something for pain that I don’t usually take so it worked better than my usual pills. Most people have to take a nap after taking anything for pain but for me every kind of pain pill works like caffeen.  They make me have less pain while also making me want to clean everything that I can. It works for me. And no, I didn’t take anything that I’m not supposed to take. My doctor changes my pain pills every few months back and forth between two different kinds so that when one of them stops working I can switch to the other one for a few months. That way I don’t build up a tolerance to either one of them and they keep working for my pain. If more doctors would do that with more people then there wouldn’t be so many people who are on ridiculous doses of any one drug.  I used to call them medicine, but someone I respect told me a long time ago that they are drugs and shouldn’t be confused with other kinds of medicines. That way you don’t forget to be very careful with what amounts you allow yourself to take. I’m so jealous of people who can first of all get through most of their lives without taking anything for pain at all, and also for those people who when they do have to take anything the tiniest dose works for the pain and they take a little nap and are fine when they wake up. I’m lucky that I’m able to sleep at night at all, but I’ve discovered Tylenol pm without the Tylenol. It’s actually just Benadryl, and I take it every night and I usually sleep just fine. I try not to take anything at all for pain at night because then I would be up all night wanting to clean something. You might be getting the impression by now that I’m a clean freak…but no. It’s my best friend who is a clean freak and she lives right across the street from me, and I’m embarrassed to have her see my house if it doesn’t look nice. She sometimes pops up without me knowing that she’s coming so just incase she does I try my ass off to have everything looking at least half way clean. I love having her over so I don’t want her to be uncomfortable being here. She even does the dishes after we have dinner or a bar-b-que, and I must be picking up on her habits because I’ve found myself doing her dishes when we go over to her house too. It’s so cold this morning that I had to put a hoodie on over my clothes as soon as I woke up. I love it when it’s cold outside, especially after having such a hot summer this year. I’m considering putting my Christmas decorations up a week or so early this year. I was talking to Diane yesterday and she was about to start putting hers up as soon as we were off the phone, maybe after I finish cleaning I’ll try to find someplace to put it. Last year I had it in my dining room, but that’s where all my plants are because I have windows on both walls in that corner, and I don’t know if it would be wise to put the plants anywhere where they wouldn’t get as much sun. The cold from those windows might be getting too cold for them anyway, so I’ll have to try putting a few of them in different places and see how they do before I put the tree there. I’m surprised that they’re still alive because while I was in the hospital with Jess for a week and a half Rick forgot to water them, so I had a lot of dead leaves to pick off when I finally came home. The plants are doing better now that they aren’t all dried out. I can’t be angry with Rick though because he had his hands full with a lot of other things and I came home to find everything else well taken care of. He even finish all of the laundry and cleaned all the floors. After I drink my coffee this morning I think I’ll try to finish my chores so I can look around and be very proud of myself for doing so much work. This is one of those times when I wish we had a smaller house, but if we did then I wouldn’t be able to get around as well in my wheelchair. I also have to write out everything that happened to Jesse in the hospital because one nurse didn’t take care of her when I came home to get some sleep. I’m  going to run this by Rick’s lawyer to see if he thinks that we need him to handle it or if we can just deal with it ourselves. I know it isn’t a huge law suit but I do think that they owe Jess some compensation for what they did to her, and we need to make sure that the hospital takes some kind of action against that nurse for causing Jesse to have to have medical intervention because of that nurse’s incompetence. I do have some pain in my shoulder and arm this morning but I think that I won’t notice it as much if I keep busy. I should probably start with cleaning up all the dirt that Cali threw out of the coffee cup planter.