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13 April 2012

#HAWMC post #13

Ten Things I Could Not Live Without
I am not listing these things I any particular order. I am just listing them as I think of them. Some of these are lighthearted, some more serious. But what's new? I tend to mix lighthearted and serious at times. I am a goof like that!!
  • Coca Cola. I maybe could live without it, but what fun would that be? I actually did manage life without it for a time. Sometime in January 2009 is when I became unable to eat anything or drink anything. That meant no Coca-Cola for me. :-( Sadly this lasted through early April while I was out of it. Even then I slowly went back to increasing how much I was able to drink.
  • My loved ones. This is a good sized group. Both family and close friends who are a part of my chosen family are in it. I know my guys are so understanding about the things I cannot do. I am also thankful for the other members of my family who are very understanding about my health issues. Then there are the friends of mine who are more than friends. They are people I'd choose as relatives if we could pick our own. Each of the people in that group are in it for a reason. Some are there just because of who they are. They've been  "my family" for over 20 years. We've been through thick and thin together. Aside from the three people who know me better than anyone else (my guys and Mom), certain members of this family know me so well. I have so many memories of the things we did growing up and just hanging out as a family. Then there are the newer members of my chosen family. The ones whom we have known since Mini Crypt was almost 2 years old. Through these 8 years they've been such a help. I am so glad that we met, in spite of how we met! They have had a hand in making Mini the awesome kid that he is. Our latest chosen family member helped me so much while I was in the hospital and nursing home and is still so helpful. I don't care just because of what this person does to help me, but I genuinely care about who this person is for their personality and who they are. Even though there are a number of people in this group, I count this as ONE of my ten things I could not live without. 

  • I also could not live without my pain doctor and the staff at Pain, Spine and Sports Medicine. I am so thankful that I have such a wonderful doctor. He truly cares about making sure I am able to be in the least amount of pain that we can get me in. He told me at my first visit that he could NOT take away all of my pain. But he would help me get to a level of pain that I could tolerate and at which I'd be able to function. He has done as best he can to help me. Included in that is the fact that he does a procedure on my lumbar spine called an RFA. I won't go into details here, but if you'd like to know how he helps my back pain, you can read about my experiences here on my blog with all of the posts labeled RFA

  • I also could not live without my medications in all honesty. I've been where I was not on medications before and it is not at all a good thing. I am unspeakably miserable. I do not function normally. I can't keep my mind on much aside from the pain, stiffness, and all of the other problems that come with being off of my medications. I am not "myself". I am in a state of almost being disoriented because I just cannot concentrate due to the pain.

  • I know that the education I have had is not something I could easily live without. Not just my formal education, in a classroom setting, but the education I've gotten because of my health issues. I have enjoyed gaining the knowledge even if it does come at the expense of having health problems. I know that the education I've gotten through various sources has made me a better patient in many ways. It has allowed me to be a partner in my own health care and make better decisions on treatments etc. I am thankful that even as a child, I was encouraged to learn as much as I could about my disease(s). My pediatric rheumatologist taught me a lot about my health. I am glad that my Mom insisted that I be a part of everything about my health. She wanted me to be able to make informed decisions. And also, as she's said, "It is YOUR body, you have to live with the decisions made." My doctor supported that as well. In fact, he was almost brutally honest about the possibilities. But that was good in a way. By knowing the worst that could happen, I could try to avoid those things that led to the worst outcomes by preventing the things I had control of.

  • I also could not live without a number of my aid devices, such as: my leg braces and ankle foot orthoses, my wheelchair, my forearm crutches, my walker, my grabber, my shower chair, my hospital bed and my raised commode seat. All of these keep me as independent as possible. There are days that I get around just fine with my crutches. Other days, I need the extra support of my walker. And there are some days and activities where I MUST have my wheelchair. If I am needing to do a lot of standing or walking, then my wheelchair goes with me. Or I use an electric cart in the stores at times. There are times when I think I can walk but that's is just wishful thinking on my part.

  • My cell phone is another item that I would not want to live without in all honesty. I keep in touch with my husband as well as some of my other friends and family. I call my mother daily. I also get some of my Facebook and Twitter messages via text. I prefer texting at times because I can take my time and collect my thoughts and make sure what I am trying to communicate makes sense and is spelled properly.

  • Another thing I could not do well without is my online interactions with others who have different types of arthritis, chronic pain and/or fibromyalgia. It's hard enough to go through life with these diseases but if one did not have the ability to contact others who also deal with the same diseases.  Being able to share ideas on coping, having the understanding of how you feel, being able to give each other support through the rough patches. It's comforting to know that others are there and understand what you're going through. They can tell you if something is normal or not if you're newly diagnosed or just give you a shoulder to cry on when things are rough and you're tired to telling those around you. OR if they're tired of hearing you. Sometimes families can be less than understanding. One of the groups that I've been with for some time is 4RATalk.com

  • Reading is another hobby of mine I wouldn't enjoy not having. I love to read. When I was in the hospital and unable to read it was rough on me. In the early stages, it didn't matter so much as I didn't have the attention span to listen if someone read to me anyway. But once I "woke up", for lack of better word, I got tired of TV. I am not a big TV person anyway. It took awhile before I could actually hold a book because of the contractures in my hands. While I was ill, my hands closed into loose fists, my wrists bent so that my fingers were pulled down toward the underside of my wrists, my elbows were also bent. They were bent in such a way that my fists could rest on the area near my collar bones. It took a bit for my elbows and wrists to relax. My hands took a bit longer to open up; my right hand opened fully fairly early on, while my left hand stayed in a loose fist a good bit longer. The way it opened up was odd as well. My thumb, index and middle fingers loosened up but my ring and pinky fingers never opened at all while I was in the hospital. In fact, it was not until April 2011, when I began working with Donna, an OT at Conway Manor, on that hand. We did a couple of exercises as well as using the E-Stim. E-Stim stands for Electrical Stimulation. “An E-Stim unit is an electrical device that sends currents through unbroken skin via small electrodes that target muscles. This device has a wide variety of uses within the medical field including muscle toning, muscle spasm relaxation, and pain prevention.  Within the field of physical therapy, E-Stim is important for rehabilitative purposes and enhancement of the healing process.”
    E-Stim units induce muscle contractions that are stimulated by excitation (current) produced directly at the motor nerve. Current acts just like signals sent from the brain to cause muscle contraction. E-Stim is simple to operate. Electrodes are placed on the target muscle group area with conduction gel. The electrodes are then plugged into a power supply. The power supply emits current that in turn stimulates the muscle group.  This passive muscle stimulation is important in rehabilitative therapy, as it is a simple, easy way to build muscle.  This is important for re-education of muscles and for reintroduction of muscles after immobilization due to injury.1 As I had the E-Stim on my arm, I was also doing exercises on my hand to open the fingers up. I would use a good sized wood cylinder that had the loop part of Velcro wrapped around it. I would roll that down a board that had the hook part of Velcro attached to it. The Velcro provided resistance which caused the fingers I was working on to work harder

  • I can only think of one more item I cannot live without. That's my faith. Notice I did NOT say religion. To me they are very different things. Faith is a relationship, while religion is how we publicly express our faith through worshiping God.
Religion2 is defined as:
1.
belief in, worship of, or obedience to a supernatural power or powers considered to be divine or to have control of human destiny
2.
any formal or institutionalized expression of such belief
The word religion in Greek is θρησκεία (thrēskeia, pronounced thrā-skā'-ä Strong's G2356). It means:
1) religious worship
a) esp. external, that which consists of ceremonies
1) religious discipline, religion3
 Faith is defined as:
inner attitude, conviction, or trust relating man to a supreme God or ultimate salvation. In religious traditions stressing divine grace, it is the inner certainty or attitude of love granted by God himself. In Christian theology, faith is the divinely inspired human response to God's historical revelation through Jesus Christ and, consequently, is of crucial significance4
According to Heb. 11:1 faith is defined as, "Now faith is the substance of things hoped for, the evidence of things not seen."(NKJV).  The word for faith is the Greek word "πίστις", (pistis, pronunciation pē'-stēs Strong's G4102). It means:
 1) conviction of the truth of anything, belief; in the NT of a conviction or belief respecting man's relationship to God and divine things, generally with the included idea of trust and holy fervor born of faith and joined with it
a) relating to God
1) the conviction that God exists and is the creator and ruler of all things, the provider and bestower of eternal salvation through Christ
b) relating to Christ
1) a strong and welcome conviction or belief that Jesus is the Messiah, through whom we obtain eternal salvation in the kingdom of God
c) the religious beliefs of Christians
d) belief with the predominate idea of trust (or confidence) whether in God or in Christ, springing from faith in the same5
The differences between religion and faith are mainly that faith is an inward belief and religion is an outward manifestation of that faith. For me, I don't necessarily feel religion in the sense of the outward ceremonial definition of the word is what God wants from us. He wants our faith in Him. Faith is a personal belief. Religion is an outward show of our faith. While we are called to gather together as Matt. 18:20 says, "For where two or three are gathered together in My name, I am there in the midst of them.".
According to the International Standard Bible Encyclopedia, “Jesus did not Himself prescribe public worship for His disciples, no doubt assuming that instinct and practice, and His own spirit and example, would bring it about spontaneously, but He did seek to guard their worship from the merely outward and spectacular, and laid great emphasis on privacy and real "innerness" in it (Mt 6:1-18, etc.). Synagogue-worship was probably not abandoned with Pentecost, but private brotherhood meetings, like that in the upper chamber, and from house to house, were added. The young church could hardly have "grown in favor with the people," if it had completely withdrawn from the popular worship, either in temple or synagogue, although no attendance on the latter is ever mentioned.”6

1 E-Stim. Applications of Physics in Physical Therapy Electrical Stimulation Therapy. What Is E-Stim? http://www.unc.edu/~wrightke/what2.html (accessed: April 14, 2012)
2 religion. Dictionary.com. Collins English Dictionary - Complete & Unabridged 10th Edition. HarperCollins Publishers. http://dictionary.reference.com/browse/religion (accessed: April 14, 2012)
3 Blue Letter Bible. "Dictionary and Word Search for thrēskeia (Strong's 2356)". Blue Letter Bible. 1996-2012. 14 Apr 2012. < http:// www.blueletterbible.org/lang/lexicon/Lexicon.cfm?
strongs=G2356 >
4 faith. Dictionary.com. © Encyclopedia Britannica, Inc.. Encyclopedia Britannica, Inc.. http://dictionary.reference.com/browse/faith (accessed: April 14, 2012).
5 Blue Letter Bible. "Dictionary and Word Search for pistis (Strong's 4102)". Blue Letter Bible. 1996-2012. 14 Apr 2012. < http:// www.blueletterbible.org/lang/lexicon/lexicon.cfm?
Strongs=G4102&t=NKJV >
6Crannell, Philip Wendell. "Worship", International Standard Bible Encyclopaedia. Edited by James Orr. Blue Letter Bible. 1913. 5 May 2003 14 Apr 2012.
type=GetTopic&Topic=Worship&DictList=4#ISBE>

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