Saturday, August 28, 2010

Sticking my head out!

I am well aware that I may both deserve, and receive, a slap across the face from several of you after you read my post today. They say that among friends you should never discuss religion and politics. Well so far I have exposed all of you to a lot of religious musings without having been smacked around, so it may be about time.

I am and have always been a proud Liberal, but what I am going to say now, may by some be perceived as if I have joined the "enemy's" camp and become a traitor to my own. I am guilty of neither offense.

I was watching the coverage of Glenn Beck's rally in DC this morning. Personally I think the guy is a blabbering idiot, that really just should be ignored, the more we pay attention to him, the more tickled he will be! But.... what struck me and actually also annoyed me, was all of the liberal people, who were upset that Beck will be hosting a rally at the steps of the Lincoln Memorial.

This is not an issue about whether or not Beck should be allowed to speak from the steps of the Lincoln Memorial. We live in a country with free speech, and therefore as liberals it is our duty to support his right to have his rally. We don't have to like it, but we have no right to fight it!

Two of multiple definitions of "liberal" on Dictionary.com are

1: Favoring or permitting freedom of action, esp. with respect to matters of personal belief or expression

2: Favorable to or in accord with concepts of maximum individual freedom possible, esp. as guaranteed by law and secured by governmental protection of civil liberties.


To me those two definitions represent the essence of what it means to be a liberal to me, just because someone does not have the same values or ideas as I do, does not make his or her ideas less valid!

Yeah, Beck probably could have picked a different time and place for his rally, but he didn't...just like the New York mosque. Did he do it to cause controversy and uproar by doing it in the same location and on the 47th anniversary of King's I have a Dream speech? I don't doubt it for a second, this was all a well thought out plan. Beck wanted to make us come out and show that we are really not as liberal as we would like people to think we are. And guess what? Some of us fell for it!

Let him rally away, we will always have King, he fought to make sure that we all have the right to free speech, even Glenn Beck. If supporting Mr Beck's rally at this inopportune time and place makes me less of a liberal, then so be it. In my mind it makes me more of one!

Enjoy your weekend! I look forward to taking on feminism :-)

P

Contact email keepinghopejourney@gmail.com

Wednesday, August 25, 2010

Jump

I have now decided that the effects I am feeling are not placebo effects, but little positive effects of the albuterol. Someone told me, why not believe that it is the albuterol? and that is true, why not?

I don't think I ever completely covered the subject of fear. We all live with fear every single day, fear that we get sick, fear that something will happen to a loved one, we fear this and that. It is a part of life. I too have fears. Do I have more fears than the average person? Maybe, maybe not. My fears are that the MD decides to take off tomorrow and I will have lost all mobility within the next couple of months. You guys don't have that fear, but we all have the fear that we could get hit by a semi truck going home form work tomorrow, if that happens my fear of the MD taking off will become secondary. There is fear (the very real fears of getting hit by a truck, or my MD taking off), but then there is also the fear that may or may not be real. The fear I am talking about is actually the "fear of fear itself" as FDR said.

No, I have not lost it. Living with MD or any other crippling disease, create certain fears. I refer to them as my self fulfilling prophesies. No matter where I go I am always afraid to fall. I usually don't fall, but when it does happen, I usually have a feeling of fear deep in the pit of my stomach a few seconds or even minutes before it happens. I have found myself walking on a slope thinking "oh oh, this looks like a dangerous slope I should be careful" and then, 30 seconds later I will be on the ground on my butt. The fear scares me!

Sometimes I also have irrational fears. For some odd reason I have decided that stepping off curbs to get to my car is VERY DANGEROUS, so now I make sure I touch someone's hand when doing so. I have never fallen off a curb, but my mind just decided to fear them.

Where I am going with this is, that I have physically been doing a little bit better because of the albuterol, and I think I am ready to face some of my scary fears, the ones I fear only because they are fears. I spoke to a therapist at the pool where I work out in the morning about how I should approach the curb and other steps in a safe manner, and her response was "JUMP". I asked her what to do if I fall, and she said "we will just have to pick you up and see who has the biggest bruises". Overall in life I may have her beat when it comes to bruises, but she has me beat in sound advise, I made it off the curb on my own the other day without incident. I overcame the fear of the fear of falling without getting bruised!

I think that as long as I am not stupid, I may be able to realistically work with some of these irrational fears and turn them into healthy caution.

Neat eh?

Peace Out

P
Contact email keepinghopejourney@gmail.com

Sunday, August 22, 2010

Heart in the fingertips?

"My dear Bagginses and Boffins, Tooks and Brandybucks, Grubbs, Chubbs, Hornblowers, Bolgers, Bracegirdles and Proudfoots (..... wrong speech but my hope was to get your attention by quoting Bilbo)

No all joking aside, it has now been a week and one day since I started the albuterol. Yesterday I upped the dose from 2mg once a day to 2mg twice a day, I still feel jittery, but it doesn't really bother me, I am not yet sure if it drives Tom insane, I assume he would let me know if it does. The other night while riding my bicycle before going to bed, I noticed that I had much better control over my legs and I was able to go faster than usual. I know, if anything, that this is a placebo effect, it cannot yet be a result of the albuterol, but it is progress and I hope it will keep coming. I know I will not be cured by doing this, but I have to keep trying, I have to know that I am doing everything I can to fight this disease.

I keep receiving a lot of positive feedback on my blog, especially my post on Dual Patriotism posted on July 4th, it apparently touched more people than I knew. The funny thing about that post is that it is the post I have spent the shortest amount of time writing. I was sitting on the couch drinking a cup of coffee (probably my third or fourth) while Tom was taking his shower and letting James out. I suppose that sometimes just letting your fingers do the walking, opens for direct access to your heart. I meant every word I wrote, but to me the dual patriotism post was nothing special, the only thing different was that I was not applying the usual filter, I let myself get caught off guard. I did not know that I had been caught off guard until I got the huge response to the post. I truly appreciate all the positive feedback I have received and I have never before felt so empowered, I touched a lot of people with very little effort.

I have since then put my filter back up. The fight I fight every day is not a fun fight, and I do not always have the positive attitude I attempt to share here, thus the need for a filter. Without the filter I would often be left feeling vulnerable, weak, and naked (and the last one is not a pretty picture). The current truth about this disease is that there is no cure, and even though my neurologist is hopeful that a treatment or cure will be around for me before it is to late, I have to be realistic about it, I am in for a rough ride. Running 150 mph with blinders on while yelling really loud is not a long term solution, the disease is here whether I want it to or not. This doesn't mean that I should not grab at the rays of hope I see, quite the opposite I need to run faster and jump higher, I just need to run and jump in the right direction.

But, sometimes I also need to stop and smell the roses, or as Tim McGraw sings I need to go skydiving. I need to remember to take in today and save up so I have enough to get me through tomorrow and the next day if needed, and I must allow myself to use of my surplus and let people know that I am using it if I have to. But guess what people; we all do, you never know when your life will all of a sudden take an unexpected turn, and if you don't have enough roses saved up, you could end up running out, and not know where to find them again!

After all, as Bilbo said to Frodo:

"It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to."

Remember to LIVE LOVE LAUGH HOPE (and stop to enjoy and smell the roses)


P

Contact email keepinghopejourney@gmail.com

Monday, August 16, 2010

Slowly coming to an Agreement? Part II

It is later in the day now, I finished part I this morning. I have the sniffles, and found out that it can be a side effect of albuterol. It is no big deal at all, nothing a kleenex can't take care of.

I ended Part I by mentioning the tug I felt in my heart last week. One of my favorite authors is CS Lewis, most of you probably know that he wrote the Chronicles of Narnia, but some of you may not know that he was also a devout Christian, and published several books on Christianity. Lewis (his friends called him Jack, with the number of his books I have read over the past year, I think that it will be ok if I call him Jack as well). Anyway, Jack was not always a Christian. He was raised as a Protestant in Northern Ireland, became an atheist while a teenager, only to become a Christian again when he was around 30. JRR Tolkien can be credited with part of the reason for Jack's conversion. Tolkien also happens to be one of my favorite authors.

I felt the now famous tug in my heart last week, but my brain is still fighting and trying to figure out what it was. It reminds me of the way way Jack described how he became a Christian again, he fought greatly up to the moment of his conversion and compared himself to a, "'...prodigal who is brought in kicking, struggling, resentful, and darting his eyes in every direction for a chance to escape.." . \

I am still very much kicking and struggling to find a way out, if my brain decides to make sense of all of this, what will that mean for me? will I be able to find a purpose in this life?

I have never denied that Jesus existed, there is simply too much historical proof of that. I thought that he was probably just a really good guy trying to help people out. However, Jack brought up a really good point in A Case for Christianity:

"I am trying here to prevent anyone from saying the really foolish thing that people often say about Him [Jesus Christ]: “I’m ready to accept Jesus as a great moral teacher, but I don’t accept his claim to be God.” That is the one thing we must not say. A man who was merely a man and said the sort of things Jesus said would not be a great moral teacher. He would either be a lunatic — on a level with a man who says he is a poached egg — or else he would be the Devil of Hell."

What Jack is saying here, is that you have to make a choice, there is no in between, either you accept that Jesus is the son of God, or you believe that he was a mad man! I still haven't figured out which I think he was. I never thought of him as a mad man as Jack wants me to but I am not quite sure I am ready to accept him as the Son of a God I am not 100% sure I believe in. It appears that I may be facing a little bit of a battle between my heart and my brain, my heart seems to slowly be coming to an agreement with the guy upstairs while my brain still says "hold the horses, this is a big step".

No matter what the outcome of my search ends up being, I have already benefited greatly from it. I have always loved reading, I read for enjoyment, I picture everything I read in my brain, because I have been so busy just reading for enjoyment and pretending to be a warrior or an elf or whatever else I read about, I have often missed important points or messages in the literature I was reading. I, for example, never pictured Aslan as a Jesus figure in the Chronicles of Narnia, I just liked Lucy and thought she was a pretty neat little girl. I have learned to read for more than just enjoyment, I now also read for information and understanding. I like it.

Sleep tight!

P

Contact email keepinghopejourney@gmail.com

Slowly coming to an agreement? Part I

Hey Y'all,

I am on day three of my albuterol, and really don't have much to say about it so far other than limiting my coffee intake in the morning to about one cup is a good idea! I am on a really low dose and don't really expect to feel anything for a little while. I noticed Yesterday that I was somewhat fidgety all day, but that is really nothing new as I have fidgety periods on and off. I got a new exercise bike a while ago, and finally got it out Yesterday, and I did really enjoy getting my heart rate up and feeling that I got a good workout. I will keep you all posted on how I feel etc.

I have decided to divide this post into two, if now three different posts, it will be long, and those of you who have no interest in my spiritual journey, may just want to stop reading now. If you you are still interested, get a cup of coffee or tea, and prepare yourselves for a marathon!

I had a really good conversation with one of the people that have inspired me to look more into this whole religion thing the other day, and I got some really nice answers to some of the questions I have had. I keep coming up with new questions, but I will return to that later. Most of my questions refer to the reformed view of Christianity, mainly the views expressed by John Calvin. This is mainly because most of the literature I have read so far has been of that view.

There are several reasons why I have resisted the idea of God most of my life, some of these have now been dispelled, and I feel that my heart may slowly be coming to an agreement with God. Slowly being the key here. I will describe my two main reasons, one is purely selfish, and one is more of an intellectual resistance. My selfish reason is that I have always thought that if there is a God, he should be this big cuddly guy with a white beard, who jumps in and makes everything right when the going gets tough. This is the God that is portrayed on TV, the God some people of faith tell you about when they explain their beliefs to you. There is a picture and poem that comes to mind I am sure most of you have seen it. It is called Footprints. In the poem, the narrator describes how he/she was walking next to God, the picture shows two set of footprints on a beach. However, the narrator then says that when the going got tough, only one set of footprints showed up in the sand. The narrator is disappointed in God for leaving him/her alone during the hard times. God's response in the poem is "that is when I was carrying you". I know a lot of people, who should have been carried, but who wasn't, a lot of people, who could have used the comfort of this cuddly old man, but who didn't get it, myself included. The selfish reason here is "if you are really that nice and caring, couldn't you just help me pick up my feet a little?, and if you are lifting my feet, could you please let me know so I know?"

The intellectual reasons I had for not believing in God was or are, that this simply does NOT make sense. Come on people we all know that people can't walk on water and all that other hokus pokus they try to make us believe, we all know that. If there is a God why doesn't he fix everything that is wrong in the world rather than have his son show off magic tricks on Earth?. Slowly my intellectual arguments appear to be peeled off like layers on an onion. I mentioned above, that most of the literature I have read so far is based on a Calvinist/reformed view, as are most of the conversations I have had. I also have a great Catholic source! One of the first things you will encounter when exploring Calvin is TULIP. I will explain how I understand TULIP, and why it in some ways have helped me make sense of Christianity.

TULIP is also called the five points of Calvinism, they are by no means touchy feely, and they may not make people feel good, but they make me feel better! TULIP in a very brief and simplified way, is an acronym for:

Total Depravity total depravity means that we are all born selfish, and we are unable to choose to serve God on our own, therefore God chooses whom amongst us will be saved! None of us are good, only God is good!

Unconditional Election This basically says that God chooses who he "saves" it has nothing to do with merit.

Limited AtonementThis is a somewhat controversial point, well I guess they all are if you think about it, but this one may strike non Calvinists as particularly controversial. Limited atonement means that Jesus only died for the elect few, and not for everybody.

Irresistible Grace This point states that once you have been chosen you will be unable to resist God's Grace. The Holy Spirit will be the one who makes sure that your heart and brain is in on the deal.

Perseverance of the Saints Means that there is nothing you can do to lose your salvation.

A while I ago I was sick and tired of having MD, I still am, every single day and then some. I have several times mentioned how I kept looking for a reason, how I kept looking for somewhere to place the blame, and how I time after time failed. I decided that if there is nowhere to place blame, other than in nature, fighting would really not be worth it in the long run.

During the conversation the other day, I asked how do you know if you are one of the elect, as the logical part of me would say that I am not one of them. The answer according to the person I was speaking to was that to him, I am a great example of Total Depravity. I grew up in a country that does not put much of an emphasis on religion, in a family that did not practice Christianity other than by celebrating the holidays.

I rejected Christianity because some people are too preachy, there are who want to save me without me asking to be saved. Despite these rejections, something sparked the interest in Christianity, and the right people just happened to be in the right place at the right time. By the right people, I mean intelligent, spiritual people, who have been able to guide me and help me in finding answers to some of all of my questions.

My next question in this connection was then "Do you think you were planted?" "what if I had gone somewhere else the day I ran into you?". He thought he probably was "planted", as are all the other people I continuously torture with my endless stream of naive questions.

The answer to my question about whether or not I am one of the chosen ones, obviously sparked more questions from me, such as why would we even try to be good if it doesn't matter? The answer I got was that the incentive to be "good" (in the human definition of good not God's), is that once you understand the gift Jesus/God has given you, you will do whatever it takes to please Him. Not because you have to but out of gratitude. I am not yet sure what the gift is, but I am sure it may have to do with the little tug I felt in my heart the other day!.

I will stop for now, if I haven't already lost you, I am impressed, and I hope you will take a look at part II as well!

P

Contact email keepinghopejourney@gmail.com

Thursday, August 12, 2010

BigMac with chicken

Imagine going through the drive through at McDondald's, ordering a BigMac only to find out when you eat it, that it has chicken in it. What would you think about that? Have you ever met somebody who constantly invades your personal space and gets into your business without an invitation?

I spend most of my weekday mornings exercising in a hot water pool, there are plenty of benefits to exercising in water, the fact that the water takes away most of your body weight makes the workout effective but yet low impact. The pool is an awesome place to go, I have made a lot of friends both young and old. What I like about the pool is that we are all in some way or form in the same boat. We either have a disability or injury that keeps us from going to Gold's. However, the pool is also a very intimate place, we are after all half naked sharing a huge bathtub. Whenever you have more than one person in one place, issues are bound to arise. I will, however, have to say that considering how many people come and go, they are surprisingly few and far between. We are all very careful to keep evil gossip at a minimum.

Yesterday I had my first really "ugly" experience in the pool. I think I managed to stop the situation before it got out of hand by simply removing my self from it. I left earlier than I normally would, but there are really very few places to hide in a pool unless you keep your head under water, and that is not a long term solution.

In one of my first posts I mentioned how unsolicited advice is one of my biggest pet peeves unless you are a close friend, family member, or Dr. To me the unsolicited advice is unwelcome regardless of whether it is about how best to manage my MD or how to brush my teeth, keep it to yourself unless asked. Well, some people appear to have a problem understanding that, and also with understanding when to be quiet. The same type of person for some reason also has problems understanding that it is rude to bud in on other peoples' conversations and take over. There is a person at the pool, who repeatedly gets in everybody's business, it really doesn't matter what the issue is, she always has either a better solution to whatever you are talking about, or a sob story involving herself and how she has been mistreated. I have several times (almost daily) just smiled and said sure when she has gone to far. She is probably just lonely.

Yesterday I was speaking to a friend about how I was tired because of an added work load at work. Ms B (busybody), decided to bud in and proceed to tell me how I could improve on the situation. I told her that her solutions really weren't options as we have certain procedures and rules to follow, and that the company I work for is a franchise business, so even if I could think of a better way of doing things, it simply wouldn't be an option.

Anyway, she would NOT let it go, she kept trying to discuss it with me. I finally said that I no longer wanted to discuss the issue as there was nothing to discuss. She still did not get it, and my blood slowly started to boil. When I had had enough, I left the pool without making a scene, I was rapidly approaching a place where I wanted to rip her head off.

I feel good about myself for not letting my temper get the best of me in a public place, but I do feel bad about not going back to face her today. I need a plan that will restore peace, and keep us both happy before that will happen, she will not be the one to come up with it. I harbor no hard feelings, I just pity her. All she did was try to get me to sell a BigMac with chicken, and how could she know that is not a good idea?


Lunch anyone?

P

Contact email keepinghopejourney@gmail.com

Tuesday, August 10, 2010

Twice in two days...

Finally finally finally.... This morning I got a call from my neurologist's office, he is now convinced that my heart beats, and that my liver and kidneys work the way they should. I can pick up my prescription any time today! I will probably not begin the experiment until Saturday morning. Albuterol supposedly has the same effect as a shot of espresso, so I want to know how I react to it before having to drive etc. I will, however, keep you posted, I have been known to change my mind in the past!

Those of you, who read my post from Yesterday, may have gathered that I have a certain passion for MD research. I have decided to do something this year I have never done before. I have created a website through the MDA, raising money for the MDA. It is in connection with the Laborday Telethon. I do NOT want anyone to feel obligated to contribute, we all have enough to spend our money on, but any donation would be greatly appreciated. The website has the following address https://www.joinmda.org/MyEvent/MyHomepage/tabid/171892/Participant/tom_pernille/Default.aspx There is also a link under Websites of Interest.

It has been a while since I have written anything about my spiritual search. I have not given up, far from it, nor have I forgotten about it. I am currently reading a book by a pastor called Tim Keller. He leads a large congregation in New York. He, just like Sproul, has a way with words, that makes you understand, and wish for more. When I was reading before going to sleep last night, I felt a tug at my heart for the first time. I did not have a moment of transformation or anything like that, but I had a feeling that if, Jesus really is the son of God (or actually God), and he died on the cross for our sins, he really is a pretty cool guy. I understood that if there is a God, we are now dealing with a God, who not only knows about our sufferings, he has suffered with us, and paid the ultimate price so we don't have to. Pretty neat eh?

Peace

P



Contact email keepinghopejourney@gmail.com

Monday, August 9, 2010

Pockets?

Normally I would think that the busier you are, the more you would have to say in a blog, but I was wrong. I have had a very busy last week and weekend, and have really not felt any kind of inspiration until today. I guess that is what makes a blog different from a diary. I took the morning off from exercising so I had a little time to just regroup before a new week. Deep thoughts take time!

Last night while going through my emails etc before going to bed, I noticed one of those annoying ads claiming to be able to increase your muscle mass etc. I don't fall for stupid stuff like that, but at the same time, I am desperate for hope, as are all other people suffering from MD or other untreatable crippling diseases. We grab for hope whenever and wherever we can> I imagine being in a room full of balloons, I want one but no matter how high I jump I can never quite reach one.

Something got into me and I decided to click on the picture of the handsome muscular guy, to see what the fuss was all about. It turned out, as expected, to be an ad targeting bodybuilders telling them how nitric oxide helps improve performance, strength and whatever else bodybuilders are looking for.

There was an explanation as to how the nitric oxide works, and it seemed to me to be similar to the way the albuterol is expected to work. I decided to Google nitric oxide and MD, and I actually found quite a few links with information. I am not a doctor, so I may very well have misunderstood what the pages were saying, but as far as I could figure out, a combination of nitric oxide and an NSAID such as ibuprofen has proven some effect in treatment of MD.

The conclusion of one of the articles I found was:

"Conclusions and implications:  Co-administration of NO and ibuprofen provided synergistic beneficial effects in a mouse model of muscular dystrophy, leading to an effective therapy. Our results open the possibility of immediate clinical testing of a combination of ISDN and ibuprofen in dystrophic patients, as both components are approved for use in humans, with a good safety profile."

HELLO PEOPLE, why is this not being yelled from the rooftops? is it because no one really stands to profit from it? Are people being bought by pharmaceutical companies to keep looking for more "advanced" or "sophisticated" treatments so they can all become richer while we get sicker?, or, as is probably more likely, did I completely misunderstand the information?.

Still waiting for the albuterol, but it does give me a little peace of mind to know that if it for some odd reason does not work out, I have something else I can try out. If that doesn't work out I will have to look for something else to try.

I will keep grabbing for balloons, hopefully I reach one some day, or maybe someone taller will be kind enough to grab one for me.

Stay Safe

P

Contact email keepinghopejourney@gmail.com

Sunday, August 1, 2010

One Month

It has now been one month since I wrote my first post. It has been an interesting month for me. First of all, I am finding myself far outside my comfort zone, I have "hid" behind the internet for so long, and opening up is very scary. The "turtleitis" still tries to rear its ugly head, but I am fighting it. In some ways the blog is a double edged sword. It has definitely taken a load off my shoulders, people now know what is really going on in my life, I no longer have to pretend I am someone I am not. However, I also fear that in the long run, I might use it as an excuse for crawling back into my shell, it is mighty cozy in there. Last weekend a friend called and asked us if we wanted to go out on Saturday night. I decided to stay home because I was embarrassed about myself, the way I look when I walk etc, and I did not feel like facing people. It is not the first time I have stayed home alone. I am fine with it as I am communicating with a lot of people online, and you are all very real to me! I do, however, need to find the happy medium, where I interact with people face to face and not just online. My face to face comfort zone is very small, I know that we all have issues, my issue happens to be on the outside. I have no way of knowing the issue of the beautiful woman next to me at the bar, but since I can only see the outside, it is all I have to judge from. I am constantly being told that people don't judge me by the way I walk, they just see a 35 year old woman with some form of disability, and that I should stop worrying about what other people think. Guess what, I don't worry about what other people think, but I do worry about what I think!

My favorite part of having started my blog is that some people I lost touch with have come back into my life. It is funny how you can be very close to someone for a really long time, and then more or less lose touch. Once the contact has been reignited, it is as if it was never gone. I think that is what real friendship is about. You don't need to talk on the phone every day, or send emails every day, or see each other every day. Once someone is in your heart, they are there for good!

I appreciate the feedback I have been given, and I know that some of my posts have been better than others. The last post I wrote is actually a good example of that. It is clear to me that I never truly got my point across. I have re-read it, and know that it probably should be rewritten, and I may do so. I do, however, want to clarify that I don't think I have done anything to deserve getting MD, but that sometimes, when I get frustrated, I look for somewhere to place the blame, and since it is "unplaceable", I turn towards myself. I think it is a part of a grieving process, and anger plays a very important role, however, you can't just yell without targeting your yelling, it is just not as effective. So I yell at myself, not the smartest thing to do, but it is just a default setting I have in my little brain.

I also want to return to my thoughts about God in this connection. It has become obvious to me how ignorant I am. One of the reasons why I fought the idea of believing in God was that I always thought that God punished people according to their sins, and that if I were to chose to become a Christian I would have to figure out where I went wrong. Sproul, however, took a big load off of me, by stating that, at least from the Reformed view, your amount of suffering is NOT proportionate to your amount of sin.

I want you all to have a great week, enjoy August !

P

Contact email keepinghopejourney@gmail.com