This a my blog about my life and struggles with HKPP (a terminal disease); Conquests and set backs, relationships and the strengthened resolve of their survival.
Tuesday, September 30, 2008
Tuesday Brief
Another brief post simply due to feeling less than preferable. Nice way of saying that I'm feeling less good this afternoon. The morning went well and PT was good as well. When I got home, I felt like getting things done so I proceeded to accomplish several smaller tasks that I had set before myself and try to accomplish, while CC is at work. I suppose that I went longer than I should have, of course hindsight is always 20/20. Brain fog kicked into gear and caused me to become slower and more deliberate and seems to be coming and going. Shakes began after my body had continuously sweat for nearly 15 minutes or so. Typically, sweating lasts for a couple minutes or so and then subsides. This time, it reminded me of 2006 episodes where the sweating lasted for several minutes and generally ended in an attack. I got my own liquid K+ and knew that CC was only minutes away when all this started, so I knew I'd be covered. The sweating stopped after the K+ and laying down. I also ate some yogurt as well as some spaghetti.
I'm going to finish this and go lay down on my bed for the rest of the afternoon. As noted before, profuse sweating is an indication of the body dumping large amounts of potassium. Incidentally, it's the drop in potassium that often triggers full body attacks, so, I'll have my cell by my side and will hopefully dodge this incoming bullet.
It's also quite possible that what is happening may have nothing to do with my accomplishments as well. It may just be my body being screwed up. Answers are most often educated speculation.
Okay, it's harder to type correctly so I'll stop.
Sunday, September 28, 2008
Sunday Evening
Yesterday did not come and go without exception; I dealt with a small/medium hit in the afternoon and am still paying the price today in terms of soreness and pain. We did make it to church this morning, though. We went to Sunrise Community off of Greenback and that went reasonably well. I felt well enough for us to try a lunch out together and we went to Fresh Choice which also went fine, so we went form there to Target for some stuff needed for Missy's room and I came through that as well, though I was pretty tired when we got back home. Pain got the better of me by late afternoon so I've been lying down since.
The sermon this morning was briefly on one of Paul's letters to the Thessalonians and though brief, it was insightful...go figure. It's good to be reading again.
I'll share more on our home transformation, so to speak, at another point; I'm pretty tired right now and my eyes are fatigued.
fin-
Friday, September 26, 2008
Spiritual Awakenings
This is going to be focused on my faith and my beliefs, so if you are uncomfortable with such personal topics, please skip this posting. In fact, this post is to glorify God more than it is to do anything else, so skip it now if you wish.
This entry is going to be more so a continuation from yesterday's fairly brief entry. I have wondered about posting an entry that is as personal as this one will be, but I shared the thought with some close friends in seeking their perspective and council and I think that the time is right to go ahead and share some of these thoughts with whoever wishes to read them.
Ever since I was a young boy, I have always felt that I have been very sensitive and aware of spiritual things; by no means am I elevating myself perspective, or am I claiming to be someone or something I am not, I'm simply stating that I have felt that most of my life that I could sense and I could see things that most other people, either didn't sense or see, or they showed no indication of their awareness to the same things that I was sensing and seeing. Of course, now that I think about what I just wrote, for most of those same relationships, I did not share with them what I was sensing so it's quite possible that others did have similar or same experiences as me, we just didn't know how to communicate it with one another.
Anyway, I cannot recall exactly what age I was when I was first confronted spiritually, but I think that it may have been somewhere between 9 and 12 years old. I had stayed up late one night wanting to hang out with my sister and her boyfriend and they were going to watch a movie that I wasn't sure that I wanted to see but I did want to be older than I was and I wanted to do older things that I was generally allowed to do, so it was a big deal to me to be able to stay up and watch a movie with them, even though I'm pretty sure they didn't want me to hang out with them at that point in time, and who can blame them? So now that I'm thinking about that actual timeframe when my sister had a boyfriend, I had to be older than 12, so I must've been in late junior high or early high school. Wow! I had been thinking that this had taken place when I was much younger, but it could not have.
Okay, so anyway, they were going to watch the movie “The Omen”, and I only watched part of the movie with them, because it really began to freak me out and scare me. While I was watching the movie, instead of showing fearful emotions and betraying how I was actually feeling, I chose to laugh instead of cry during most of the parts that scared me. Leaving them to finish the movie by themselves, I went in to my room, and ended up going to bed, more or less like any other night, other than I was a little bit later going to bed this time than I may have been at other points; I think it was a Friday night. If I remember correctly, I believe it was 2:02 a.m. that morning that I woke up, sitting up in bed, legs straight out in front of me, hands at my sides and I couldn't move (This was an entirely different type of paralysis than what I know and understand now; the paralysis then was clearly based in fear and was not based medicinally or chemically). I woke up and realized that I was sitting up straight and unable to move. In my head, almost audibly, I heard a voice that spoke angrily to me saying that I had laughed at him tonight and I didn't know what I was doing or who I was laughing at and who was I to laugh at him. This went on for what felt like an eternity. I would've thought that it went on for hours, but I don't think that it went on for more than a few minutes. I was very scared hearing what I was hearing and experiencing what I was experiencing and I then remembered a phrase that I had been told to say by a pastor who had extensive experience in spiritual warfare, but as I was attempting to say the phrase, the voice berated me and taunted me saying that I didn't have what it takes to say the phrase that I wouldn't be able to say the phrase and on and on. After finally being able to say the phrase, I found myself soaked in sweat and landing flat on my back on my bed, almost as if something had pushed me back down. I fell asleep almost immediately, and when I woke up the next morning, I recall seeing that my closet door was now open (it had been closed when I went to bed), my clothes were off their hangers in the closet (the hangers were still hanging on the rod, but the clothes were on the ground) and most all the models that I had made, car models, plane models and such from plastic, were no longer on their shelves but were on the floor and were broken. I don't think that I went to school that morning but I think that my mom took me to see that same pastor at our church so that I can share with him what had happened. After doing so, I definitely felt much better on the one hand, because I felt I knew what was going on and I felt I knew what had happened and why. I knew that he believed me and didn't think that I was some kind of whack job or that I was trying to get attention or something, which of course I was afraid that anybody would think if I were to share what had happened. I've shared this story with my wife and with some of my closest friends that believed what I believe and I felt safe and secure sharing that experience with them. I'm sharing it on the blog because I believe that the spiritual warfare, that happens every single minute of every single day and that I have been ignoring to some great extent and not paying much attention to, is now back on my home front, only now, I don't know that I'm as much the target as my children are (one has seen some things and been scared by them while the other has felt them at different points) and being the figurative head of the household, as well as a spiritual head of the household, it is my responsibility to take a stand, to wake up and put on the full armor of God and make a difference for me and my family and not allow my children to be victimized by one whose followers are skilled and experienced at victimizing, distracting, taunting, frightening and disrupting.
Pastor Chris and his wife Sheila came over yesterday while I was writing the blog entry and that is why the blog entry was short. When they arrived, I let them in and then went back to the computer and clicked on “Post” so that, at least those brief thoughts were able to get out and be seen. Chris and Sheila, led me in prayer; we prayed for our home, we prayed in every room of our home, we prayed at the four corners of the property of the home, we prayed as we walked around the house and I took forthright spiritual ownership of this home in the name of and under the authority of the blood of the Lamb of God. We asked for God's Holy Spirit to fill every nook and cranny of this building and we demanded, in Jesus name, that any spirit that would not be of God would leave and flee the home right then. We opened the back door and symbolically, in our prayers, demanded that anything that did not belong would leave through the back door and get out. We were together for nearly 2 hours during the bulk of which we were praying and Chris was reading Scripture. I was invigorated, encouraged, awakened, as well as exhausted by the time that we were done. Pastor Chris did share with me that when he came into the home and especially when he went upstairs, he felt a spiritual “heaviness” at the end of the house were Missy and Josh's rooms are and, hearing him say that, helped me to recognize that in the past number of weeks, I too had felt what I called a “thickness” in a spiritual sense, especially at night, and though it made me uneasy to an extent, I often just found myself dealing with it prayerfully and making sure that when I tucked Joshua in at night, in particular, that I would pray for protection for him as he slept and as he dreamt. I would pray the same for Missy as well, though she would share with me that she would say her own prayers when she was going to bed, whereas Joshua prefers that CC or I pray with him once he is in bed. I don't know how long it will last that he will want his mom and I to pray for him and pray with him when he's going to bed, but I'm hopeful that he'll want that as long as possible. Having that special time with your child is incredibly special and unique; unlike any other time that you could spend with your children. At one point, while we were praying in Missy's room, I heard my own words say that “…my body may be broken, but my spirit is not” and after I said those words, I felt something like a warm chill and I knew those words were significant. In realizing what I had just said, I felt strengthened to recognize and accept the physical brokenness that I am experiencing and my family is dealing with and loving me through, but that I would no longer associate my spiritual life directly with my physical life and that the time for sleeping and resting in a spiritual sense has been long gone, and it's time that I was awakened.
I am awake.
My intent is to have my son and daughter along with me and my wife, to walk the home in prayer as a family and to pray in each room as well and then to search ourselves and our belongings to determine what things we may have that could be spiritual “doorways” or “leaks” that can allow the unwanted to enter into our home. Sounds creepy I know, but I believe that we live in a world that is eternally tied and bound to the spiritual as well as the physical, and that it is a matter of awareness and gifting that allows us to see and be sensitive to what is happening around us, in us and through us and our actions in a heavenly sense. I don’t believe in ghosts but I do believe in angels and demons because Scripture says that they are real and because God has allowed me to see and hear some of the actions and personifications of both His army and the enemy. I’m not expecting folks to believe what I believe simply because of what I write or anything like that and I’m not trying to scare anyone or creep anyone out or convert anyone by sharing this one, specific encounter. I just feel it is time to share it and hope that it may be an encouragement to someone reading this who may have had some experience in their life that they may not have shared or thought about and may have felt that they were alone in their experience and were afraid people would think they were actually crazy if they were to tell their story. So there you go. Done.
There is more to all of this that I'm going to share at this point and, though I won't share it all on here, I'm willing to share it with those who want honestly to know and I can do that through e-mail, or even over the phone.
Thursday, September 25, 2008
Thursday Again...
On to Thursday again and I just got back from my PT appointment this morning. Actually, CC and I both go in on Thursdays and they help her with her shoulder, jaw and neck pains and they help me with everything. I cannot begin to express the blessing that has come from my friendship there and the help they have selflessly given me and my wife. I know, beyond a shadow of a doubt, that my quick recoveries from my attacks are due DIRECTLY to my PT. I also know that my healthier attitude is directly due to my relationship with Mark; end of story. I'm significantly blessed in spite of myself.
I was chatting with a young friend yesterday who has a form of HKPP or something similar but more severe than mine, and she shared that she'd had some tough days recently. Those who pray, I am asking for your prayers for her; for healing and ceasing of these attacks as well as restoration from the damages they cause and the freedom lost by mobility issues and safety issues during her daily life. Just chatting with her reminds how blessed I am not to have the extent of attacks that I could have at this point. It sucks to have what I have, agreed, but I must keep it in perspective. I mean, not only does my family watch me like a hawk and care for me when I suffer attacks, but even Annie our dog, has a very specific bark when I am beginning an attack and she runs in to where everyone else is and will bark at them and then run back to me, looking back behind her as if to say "Hurry up! Come on!! He needs us!!" and she will often try to jump up to me on the couch and lick my face or hands with ears back, soft face and all. She's clearly not playing or trying to play or get attention to herself; she's trying to comfort me as best she can. When I* am laying down following an attack, I often feel the very soft and slow licks of her licking my hand; very slow, intentional, healing, comforting licks that you would see a lioness do with her young cubs or her pride leader when they are resting. I know that I am loved and cared for.
Monday, September 22, 2008
He Was Someone's Son
Monday, September 22, 2008
I was reading a Sac Bee news report this morning about a chartered jet that crashed in South Carolina late this past Friday night. The jet was carrying 6 people: Travis Barker (former drummer of Blink 182), Adam Goldstein (DJ AM), Chris Baker, Charles Still, and pilots Sarah Lemmon and James Bland. The only survivors were Barker and Goldstein. When I read the names of the two musicians, I knew who they were from the MTV VMAs that were on the other night. DJ AM would play tunes on the turn tables and Barker would improvise over the top and create impressive fills and beats during the commercials for the awards show.
On the one hand, people die every minute of every day, from the unborn to the very elderly, so why is this something different? Why should this accident become something to me?The headline for the story was something like "Roseville man dies in Musician's Plane crash" or something like that, and all of a sudden, I wanted to know who this local guy, Chris Baker, was. Chris was only 29 years old. He wasn't someone without family; he was someone who was about to celebrate his first wedding anniversary (next month) who also had a 2 year old son and he had a mom and dad...he was someone. (I'll come back to this in a minute..) In a matter of a few minutes, I was able to read about him, his love of cars, his love of mechanics, his love of his wife, his love of his son, of his parents, of his friends and on and on. I felt like i was getting to know him, though he is now before the King. This crash brought him into the view of people who otherwise wouldn't know he lived.
The focus of the media is on Barker and Goldstein, and who can blame them for their focus? They are the only two of the six people whose names are familiar to a large musical culture. No one in that same culture probably had a clue who the remaining four other people are, let alone the reading public as a whole, but those four other people were people who had lives, friends, families, colleagues, work-mates and on and on. The story I read first was about Chris Baker and then after reading that, I searched to find out more about the crash and on it went. I don't know anything about the other three people who died; I wish I did know something about them so I could share it on here with you. Their memory deserves to be remembered just as much as remembering the two surviving musicians who will now be the focus of tons of fan emails, get-well letters, posters, video exposes and regular updates from the hospital staff. There won't be much of any updates in the future for Chris Baker, Charles Still, Sarah Lemmon and James Bland; they died in the crash and fire. But I feel we should remember them, to some extent; we should remember to think of, and even pray for, their families and friends who are now experiencing the most massive emotional "black-whole" in their personal lives because their loved ones died so unexpectedly. From what I read, I believe that Barker and Goldstein are devastated by the loss of their friends, Baker in particular, and this writing is in NO WAY being critical of them or their fame or attention. This is just because I felt so strongly that I should write something for the four other people who whose families are as impacted as Barker's and Goldstein's, but whose names are only noted in the final sentence of the article.
In the second paragraph above, I wrote "He wasn't someone without family; he was someone who was about to celebrate his first wedding anniversary (next month) who also had a 2 year old son and he had a mom and dad...he was someone (I'll come back to this in a minute..)" and when I noted that I would come back to it, it was because everyone who dies IS someone. Sounds pretty simple and straight forward, but I think that we often find ourselves comfortably at a distance from knowing much about those who've passed because of how much it hurts to know them and accept inside that they are no longer here with us, no longer someone that we can impact or touch. I think that, because I believe what I do and Who I believe in, that I should feel for those who experience loss and pray for those families and if possible, comfort those who are left behind to suffer the loss. Unfortunately, the millions who die all the time are dying facelessly to us (to me) and I often don't connect with knowing who they were, what they did, etc, and my spirit is learning how to grieve for those who are grieving as well. Though we don't know them, we hopefully will remember that they were someone and that, somewhere, there is a family who is grieving their loss.I'm not at all certain that I have done justice to my original thought regarding the daily losses of the unrecognized to me and us, but I tried to. I do believe that when I die, I will get to meet and see family that I never got to see or meet during my life and I want to be able to say that I had not forgotten them, if that makes sense...if it doesn't make sense to you, that's okay I guess, because it makes sense to me.
Until later-
~~~~~~~~~~~~~~~~~~~~~~~~~~The following news report is from Whyfame.com in their Gossip section (the end result of a link I clicked for the story...) http://www.whyfame.com/gossip/travis_barker_dj_am_expected_to_make_full_recovery_after_surviving_plane_crash_5799
"Travis Barker & DJ AM expected to make 'full recovery' after surviving plane crash"
For the few of you who haven't heard, former Blink-182 drummer Travis Barker and DJ AM were the sole survivors of a plane crash Saturday in South Carolina that left four people dead. The two had just performed at a free concert (above) near the University of South Carolina with Perry Farrell and Gavin Degraw. They are currently being treated at the Joseph M. Still Burn Center for second- and third- degree burns, the AP reports: "Anybody who can survive a plane crash is pretty lucky," Mullins told reporters during a news conference Sunday morning. Barker was burned on his torso and lower body and DJ AM, whose real name is Adam Goldstein, was burned on an arm and a portion of his scalp, according to a statement from the musicians' families released by the hospital. Mullins declined to discuss specific recovery times for the men, but said such injuries can take a year to fully heal. Both men are still in critical but stable condition, he said. Right before the crash, Travis and DJ AM were lucky enough to dive out of the plane while it was engulfed in flames. An eyewitness, William Owens, watched the wreckage careen across the highway in front of him and came upon the survivors: "I noticed two guys who were on fire and it looked like a dance: They didn't know what to do," said Owens, a 60-year-old delivery van driver. Goldstein had stripped off his own shirt and was helping Barker strip naked, said Owens, who was able to identify the men Saturday night because of news reports that showed Barker's extensive tattoos. Owens said Goldstein told him four other people were on board the jet, but the flames were too intense to get close. "'Oh my God' was all they were saying," Owens said of Barker and Goldstein. "They stood there and it's like — didn't know what to do. None of us did." According to a recording recovered from the cockpit by authorities, it appears a tire burst while the plane was near its 92 mph take-off speed. The Superficial wishes a healthy recovery for Travis Barker and DJ AM along with our sincere condolences to the families of Chris Baker, Charles Still, Sarah Lemmon and James Bland.
Wednesday, September 17, 2008
Thursday's Daytime Posting
Well I'm back to using the hand recorder for today.
I got to thinking about a scripture that I read on Tuesday from 1 John and it was specifically talking about fear and how fear is not a part of love, but that fear is of fearing punishment and that love does not have punishment and...I need to go and look it up correctly. Okay, it is 1 John 4:18 and it says: "There is no fear in love, but perfect love drives out here because fear has to do with punishment. The one who fears is not made perfect in love." That was the verse that was on my Facebook page as a verse of the Day for Tuesday and then, when I went to physical therapy, Mark shared with me that he read the exact same verse that morning on a completely different daily devotional that he gets and it was just mind blowing to see God so tangibly at work, sharing a topic with both Mark and I, which is so relevant, in particular to me, and it was very, very helpful to get a handle on. I came home and thought about it for quite a while and realized that I've been living in fear, certainly for the last two years if not more and reading this scripture helped a great deal to get my eyes open to that and realize that, because I have been holding on to and living in a mindset of fear, that I was putting my family in the exact same mindset. No, I didn't mean to do it and I fully understand that and I'm not beating myself up over it, but I am now aware of what was going on and can now make the change so that we don't continue to live as we have. It is very freeing to not be fearful anymore. Even though it has only been a couple of days, I'm very hopeful to keep this perspective fresh so that I don't forget it and I don't laps back into how things were. Living with the disease is a very easy and understandable out for living fearfully but I don't think that's what God wants for me. I certainly don't want that for myself, and even more so, I don't want that for my wife and I don't want that for my children or for the rest of my family. So, the goal is to not be afraid of this disease, but to stay on top of it and respect it and treat it accordingly.
Just in the last week or so, I've been trying to throw the ball to Joshua, whether it be a tennis ball or a soccer ball or a basketball; I've tried to toss those around with him and I have found that I can't throw hardly at all and that what was second nature to me as far as throwing a ball and even catching, are no longer second nature, but require much thought and concentration in order to do correctly. I kind of figured that I'd have to deal with that maybe in my 90s are or when I turn 100, but I wasn't thinking that I was going to have to contend with this in my 40s. Be that as it may, I simply have to take it all one step at a time and concentrate and re-teach myself how to throw and how to catch so that I can continue to play with my kids and enjoy their sports with them and not close up, become a self pitying...uh...thing.
I'm not sure if I noted this before or not, but I believe that you can click on "Subscribe to Posts", located on the right side of the blog page, under my profile and under the history of posts. When you click that link, it will open another page where you can specifically subscribe to my blog and, if you do this, theoretically, each time I post something onto the blog, you should receive an e-mail letting you know that I have posted to the blog so that you aren't checking the blog during the time frames that I'm down or unable to post. I'm hopeful that that will help ease any frustrations during the time frames that I don't post. Obviously, it's my desire and intend to post every day, but as you have noticed recently, that doesn't always happen.
Major sweats are hitting again...time to go rest, horizontally.
Wednesday Night
I'm behind again on posting...sorry. My focus has been around the house and with family more so than not, and also when I've been on the computer, I've been putting my time into Facebook. As a matter of fact, I imported this blog address into FB so when I post on here, it will show up on there. Kinda cool, if it actually works like it says it will...
I've been on increased oxygen for the past week or so, and it has made a difference in my longevity during the day. That's a good thing. I don't care for how I look with the oxygen and such, but then I don't like how I look in a motorized chair either...I just have to get over it and not concern myself with what others might think, or even what I might think, for that matter. The O2 helps and that's the key.
Of most significance and importance, yesterday was CC and my anniversary! 19 years married, close to 25 years together total! I've been in love for nearly 25 years...wow. And I hear others spout that there's no such thing...but I know better, at least for me and my family, anyway.
We went to dinner by ourselves to Chili's (where else could we go locally?) My parents came up last Saturday so they were able to watch the kids while CC and I went out for dinner. Typically, I cannot pull off a dinner out without suffering some aspect of an attack, so last night was a true treat. I had issues once we got home, but at least we were home. I think the issues were likely due to the food prep.
I now have two new batteries (thanks to my parents) in the Guardian Chair (my motorized chair) and I'm sure I will be much happier with its control and lasting battery life. Mom and dad blessed us hugely with those new batteries. I took Annie for a walk around the block this evening and the chair was great and definitely different from before when the batteries were at 65%...we kinda scared a couple young men who were walking on the sidewalk; Annie and I were in the center of the street because of how Annie was watching these two guys and I wanted to give them as much room as reasonable, and sure enough, once we got parallel with them, she lunged at them form the other side of my chair, barking and such for a moment and they kicked into a sprint. I had a very good hold of her and knew she wasn't going anywhere, but there wasn't going to be any convincing them of that; they were off and gone. I felt kinda bad...only kinda though...I don't think she even took herself seriously; she stopped after a couple barks and the initial lunge and just wagged her tail and kept trotting in front of me. I think she thought it was fun.
I put up lots of pics on Facebook, for what it's worth. I'm enjoying that network so far.
Peace.
Thursday, September 11, 2008
Thursday's comeback?
today's entry is going to be via a microphone because of what's gone on the last couple of days. Last weekend, I had an attack on Saturday but I didn't have an attack on Sunday. However, Monday had an attack as well as Tuesday. Tuesday's attack took place while I was at physical therapy, and it was a particularly painful attack. Mark, my therapist, had just started to work on stretching my left leg while I was lying on my back, when the spasms hit and quickly got out of control. Because they were not able to find the potassium in my bag, they ended up calling 911 and, in no time at all, the EMTs were on site and were trying to work with me. I was unable to speak to them or see them; I could hear them at different points and have vague recollections of moments in time from that day, but for the most part, it's all just sketchy. They did not start a saline IV, which is great and I believe that was because my aunt had told them not to, as well as the fact that my aunt and my wife were on the phone at the time that the firemen came in, and so CC was able to talk directly to the firemen and explain what the problems would be with the saline.
I do have recollection that they used the siren on the way to the hospital, something that I don't recall them having used, but once before, and from the way that I was bouncing around on the gurney, I would suppose that they were driving very, very fast. The EMTs and the firemen were very caring and very kind from all that I can remember and recall. And I remembered them expressing their frustration that they couldn't do anything tangibly to help me or stop the attack from progressing. I felt badly for them as well as feeling badly that the attack happened while I was at PT causing stress on Mark and Sheri and the other people that were in there.I had forgotten to mention that my aunt was the one who drove me to my PT appointment, which is why she was there on site when the attack hit. Once I was at the hospital, I have a difficult time remembering much of what all had gone and in what order it all went. I do recall them deciding to get potassium into me, but they chose not to put it in via IV, but they stuck a tube down my nose into my stomach and then pumped the liquid potassium in that way. It was a horrible experience; being able to hear them say what they were going to do and not being able to tell them to stop and just having to go through it. While some held me down, another one forced the tube through my nose and down the back of my throat. I gagged and choked on it until I was able to convince my body to relax and that took every bit of energy that I had in the moment to give. When it seemed like an eternity after they had given the potassium, I decided that the tube had been in a long enough so I began trying hard to find it with my hands and pull it out, but the nurses caught me and restrained me and then they pulled it out for me.
Sometimes when we go into an ER, we end up getting a doctor, who will do exactly what CC suggests to him and he takes what we are saying as experience and thus he expedites the process, helping me to get over it quickly. Unfortunately, this was not one of those doctors. I believe that this attack went on a very long time, primarily due to the doctors decision not to listen to CC, but to instead argue with or repeatedly attempt to clarify what was going on with me. He told us that he would not give me any IV pain meds but would only give me pain medication orally, through the mouth. CC told him that won't work, but it's the route that he chose to take. The pain increased it did not go away. The spasms went away for a period of time after the potassium was in my stomach, but then they creeped back into place; I think because from the pain that was going on. When I was finally able to speak, I begged him to please give me a shot, at which point he relented and gave permission to give me a shot, however, he took his time in putting the request for the shot into the system, so I waited much longer than I had to. I don't remember leaving the hospital, I don't remember going home, I don't remember going into the house, and for that matter, I don't remember the bulk of yesterday either. Yesterday, Wednesday, I was in excruciating pain in my legs, my lower back, my waist, my ribs, my shoulders, my hands and my fingers; everything hurt badly. I somewhat slept through the night, though I woke up several times from muscle spasms, jumps and muscle cramps and pain. Today is a walker day and I've been on the walker since I woke up this morning. My aunt came by and picked me up and took me down to PT again and Mark just focused his energies on the upper body with the exception of doing some muscle massage on both legs; front and back, which I think was very helpful. It hurt, but it felt good at the same time. There's been no incident today with the exception that, when he had me turnover on the table, my right leg began to spasm, but I was able to focus on it and get it to relax before it caught on and began a problem. Mark said his heart skipped a beat. I am back at home, working at trying to catch up on some of the computer things, though I expect I will only get part way through all of this and will need to rest, because I'm getting tired now. I can't imagine having to type all of this in; this software and use of the mic is a real true blessing.
That's as far as I can go for the moment. I can't think of much of anything else to write at this point.
Wednesday, September 10, 2008
cant walk much at all
attack while at pt. vert
tube down nose for k+. horrible but effective. now back home....
Monday, September 08, 2008
attack while kneeling cleaning our
Sunday, September 07, 2008
Sunday Night Brief
Once again, I'm going to keep this brief; this time due to my wanting to get into bed sooner than later, if possible.
No attack today, though one was brewing, so to speak, but was thwarted by my ingestion of 30 meq of potassium tabs and consumption of lunch that CC *just happened to bring home at that minute*...there are no coincidence, as far as I'm concerned. The attack Saturday was most uncomfortable and frustrating. Bleh.
Watched some of the VMA's tonight on MTV...oh how the mighty have fallen...it is but a single spark of the bonfire it used to be. Now it's completely about getting Obama elected, as much bare chesting as they can arrange by their females and swearing. At one point, I understand that the main host (punk idiot, in my opinion) actually ridiculed and criticized the Jonas Brothers for having promise rings. A definite statement on how that part of the culture views Christianity. Interestingly, a following female presenter called him on the carpet for it and said something to the effect that not all girls are prostitutes, etc. It was very cool and very appropriate. Afterward, the host came out and actually apologised (feebly) for what he did. MTV continues to lose the very little respect I try to have for them. Those days are truly gone. Sad. I'm deeply saddened that the communications industries have lost almost all respect for themselves and now parade their wares as a red light district competitor. Shame on them.
We changed the lighting fixture in our bathroom and now we have wonderful lighting! Yay!
I got to see the chair ramp for the van today; VERY COOL! It will be such a blessing for us. So cool.
I've been drinking tons of water over the past several days, almost like my thirst never stops...kind of weird to me and a little disconcerting. Up towards 6 to 8 bottles in a day...I so don't get my body...not at all.
Please be praying for a friend "D" who fell from a chair (due to an attack) and she really got hurt. Broken clavicle, torn tendons, muscles, nerves...she's really hurting and cannot take pain medicine at all, so she's just toughing it out. Please keep her in your prayers and pray as you feel led. I'm not certain who else is praying for her besides us...so we need to step up for her. Please.
Tomorrow is Monday; kids go back to school and Annie and I have the house to ourselves for the morning. I'm trying to turn my body-clock around and break the "going to bed at 2am - 3am" routine.
It's 11:07...time to go.
peace
Forgot
CC came home from the dinner get together that she went with Joshy to, and she came home with a trailer hitch-ramp/holder for the motorized chair. Now we won't have to dead-lift it into and out of the van anymore. Total God blessing through our friends. I'm so grateful that writing the words doesn't nearly do justice to my heart. Thank you guys SO much!
It's now 1:39 and I'm going to try and go to sleep quickly.
Saturday, September 06, 2008
Testing
Wouldn't that be cool?
Attack today while traveling from Joshua's game to Missy's game. 6 hours later...turns out, in our haste to get out of the house this morning, I managed to forget my morning meds. I screwed myself up on this one. Missed Missy's game and tweaked my system.
I so hope tomorrow will be without issue.
Thursday, September 04, 2008
Thursday Night's Brief
Yet another attack yesterday early afternoon which wiped me out for the day, but while I was at PT this morning, I was told my muscles are doing very well in spite of the abuse they take from the attacks, so at least I'm not going backwards in regards to my discernible major muscles which are tested each Tues-Thurs.
It's appropriate to note that the Fatty Liver issue I am contending with is not something that will turn bad soon or in the near future, but is something to be concerned about ever 5+ years or so and to have tracked. I felt my previous post read more desperate than it really is and I wanted to clarify that.
Tonight, I was able to order some concert videos I have been wanting for years now;
- Sting's "Bring On The Night" VHS from 1985:
This is an enjoyable and often humorous documentary on the formation of Sting's new band and their first live performance in 1985. Filmed over a nine-day period, the musicians in the band are shown bantering in their usual repartee and quick come-backs as they rehearse for the big opening night. Interviews bring out their thoughts on music and performing, and there is even an impromptu appearance by Sting's son Jake, who was born on the second night of their opening concert.
- Peter Gabriel's "POV" live from '93 VHS
- Peter Gabriel's "Growing Up Live" from 2003
- Peter Gabriel's "Still Growing up - Live and Unwrapped" 2 disc set from 2005
(...Did I already mention that I met Peter Gabriel...?) :-o) Sorry about that...Anyway, I should receive them within a week and I'm very excited to FINALLY be able to get them. Money from the truck helped to make it happen, plus I found 2 of them used for cheap but good condition. Here's hoping...
I've watched very little TV over this past week but instead have been spending much time on the computer and on Facebook. Definitely cool for me at this point.
No attack today (yay) and we shall see what tomorrow holds in store.
On to tomorrow...
Wednesday, September 03, 2008
Wednesday thoughts...Addendum Again...
I *forgot* to include in this morning's post that we sold my truck this past Sunday afternoon. Long story short, a guy who had been following garage sale signs, ended up driving down our street and saw my truck in the driveway (it did not have any FOR SALE signs on it; it was just parked on the side driveway.) and asked Missy and Josh, who were both outside getting ready to leave for a late lunch at CC's brother's house, if the truck is for sale. About 2 hours later, we had cash in our hand and the truck drove away forever. That was my dream truck. I had waited all my life to have a truck like that. it tore at me as we were in the process of selling it, but I'm very hopeful that it will now be driven every day and used and enjoyed as much as I enjoyed it for the 2 years I had it. My parents were responsible for getting it into a reliable safe driving condition and I knew at the time that we'd never get that money back out of it, but then I knew that we were not "fixing it up" to sell it, but to drive it and use it, so the money was well spent.
It brings back memories of a blue Chevy 3/4 ton pick up with a bench seat, that I used to have years back, before I broke my back. It had to be sold off while I was in recovery of my back surgeries and at the time, there was no prognosis that I would ever drive again then too. That hurt as much as this did. But now the driveway is clear, the truck is with an owner who will love it like I did and we are no longer going to have to put out any more money for a vehicle that I can't drive.
The Red Hot Chili Pepper is gone. Chris Alford named it for me, or better said, christened it moments after I bought it. The name affectionately stuck.
I didn't get to sleep until almost 3:00 am this morning...I'm definitely feeling the affects of not sleeping as much as I needed to. I did sleep for around 4 hours yesterday, but I don't think I am balanced out in regards to my sleep quota, if that makes any sense. If it doesn't, oh well. It does to me.
I took Annie for a "motorized" walk this morning. I don't normally go out with her by myself, but I want to build up that relationship with her and create more independence as much as I can, safely. I use her shoulder harness instead of the gentle leader and I'm able to hold on to her while she trots along beside me. I also gave her more leash on the latter part of the block and she did great just running in front of me while I held the leash from the chair. We had one instance where she lunged at a gated Great Dane that we couldn't see but could hear; I almost "rolled it", so to speak, but was able to maintain balance and then helped Annie "re-focus", before continuing on with our short travel. I learned a bit in that moment of balance. Fortunately, very fortunately, I did not have to deal with an attack as a result of the incident. I'm not out of the woods from it for another 2 days, but I'm very hopeful nothing will come of it. When I get a pic of me and Annie together during a walk, I'll post it. I haven't really thought of what we look like together for walks...hmmmm.
I'm connecting with so many friends and people from my past through Facebook, it is really cool for me and looks like I might be able to use it as a social outlet for me, since I cannot get out and go places on my own, meet folks for breakfast or lunch or visit them at their work and the like. At least this way I can see pictures, chat, email and just generally correspond with friends, better than I could even a month ago. I hope to find and communicate with other HKPP folks via Facebook as well. The list I'm currently on is fine and good, but it's purely black and white, email texts with no formatting, no personalization, no personality except for their written words. At least on Facebook they could share photos, images, convey personality through their design of their page and even chat with one another instead of emailing and waiting for posts to be permitted and put through. Facebook give you COMPLETE control over who communicates with you, what is communicated and how it is shared. Your privacy is assured. How cool is that? Well, I'm sounding like I should get a kickback or something from them...but I'm simply jazzed about the forum opportunity. I'll shut up about it...until the next post, anyway...
We are going to make an appointment to see my primary doc regarding my continued memory losses and see if there is anything we can do to remedy that.
Oh yeah, I believe CC spoke to my Endocrine doc last week regarding the outcome of my liver biopsy and he said the results show that I have a condition called "Fatty Liver" which means that there is excess fat in and on the liver itself and that its functions are reasonably normal for now. So, we don't need to worry about that at this point; the Endocrine folks will continue to track it and monitor it for any changes and we are to expect higher liver enzymes from here on out. there will come a point where my liver will become particularly problematic due to the condition of it being a "fatty Liver", but for now, I don't have to track those labs, they are supposed to do that for us. I'm not very worried that they won't take care of me regarding my liver condition because it is something they have dealt with in other patients and they know what to do about it and how to treat me should things change, so I know they'll be watching for that and will be pro-active, given their familiarity with it.
Here is more information from Mayo Clinic's website (http://www.mayoclinic.com) on Nonalcoholic Fatty Liver Disease (NAFLD):
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Definition
Nonalcoholic fatty liver disease (NAFLD) describes a range of conditions involving the liver that affect people who drink little or no alcohol.
The mildest type is simple fatty liver (steatosis), an accumulation of fat within your liver that usually causes no liver damage. A potentially more serious type, nonalcoholic steatohepatitis (NASH), is associated with liver-damaging inflammation and, sometimes, the formation of fibrous tissue. In some cases, this can progress either to cirrhosis, which can produce progressive, irreversible liver scarring, or to liver cancer.
Nonalcoholic fatty liver disease affects all age groups, including children. Most often, it's diagnosed in middle-aged people who are overweight or obese, and who may also have diabetes and elevated cholesterol and triglyceride levels.
With the increasing incidence of obesity and diabetes in Western countries, nonalcoholic fatty liver disease has become a growing problem. Although its true prevalence is unknown, some estimates suggest it may affect as many as one-third of American adults.
Because early-stage nonalcoholic fatty liver disease rarely causes any symptoms, it's often detected because of abnormal results of liver tests done for unrelated issues. Treatments for nonalcoholic fatty liver disease include weight loss, exercise, improved diabetes control and the use of cholesterol-lowering medications.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
We've been told not to stress over it, particularly me, because it is what it is and we are actively trying to reduce my weight and control my diabetes and, hopefully next week, will be beginning to exercise on some of the PT weight machines. Other than taking even more meds, we are doing what we can and what can be expected.
I will not be afraid of this.
That is my choice and my decision.
peace for now-
Wednesday Morning...again...
HAPPY BIRTHDAY SIS!!!!!! My sister Mindy's birthday is today (9/3). I wish I could be with you to celebrate. As a matter of fact, yesterday was my sister-in-law, Kimmy's birthday and my good buddy, Ray Baldonade's birthday as well. I, like a royal putz, didn't get off a card to either one. I'll see if I can send a belated E-card tomorrow morning. Everybody deserves a card on their birthday. Everybody.
Well, once again...it's after midnight and I'm just now getting to my blog. Growl.
My last post was this past Saturday, which came and went without a manifested attack, however, Sunday evening contained an attack (nasty) as did Monday late afternoon (also nasty). I figured that I would have been on a walker Monday and yesterday, but my body has been rebounding much quicker than recent past. Come to think of it, the attacks now, as well as the recoveries, are similar to back in the middle of 2006. I hope I don't repeat the rough ones form then too...
I slept for nearly 4.5 hours this afternoon/evening...just kind of passed out. While in a light sleep, I was aware of the myoclonic jerks which were hitting every few minutes, it seemed. I hate those with a passion, but I cannot do anything about them at all.
I've spent much time learning Facebook and getting acquainted there, more than I have been keeping up here. I'm sorry about that. I'll do better. Problem is that, the attacks last for 4+ hours and then I am limited as to how much energy I have to post or even sit at the computer and Facebook is a interactive social on-line network, so there is immediate gratification most of the time, when I log on.
I really want to share Facebook with the folks on the HKPP list, but I'm not sure how to do it without getting kicked off the list. Anyone who's on the list and reads my blog, feel free to check out what Facebook is. It's a very cool way to socialize even when you are feeling imprisoned by your house and disability. It's been a real blessing to me so far.
I will try to recall the past few days activities to get them noted on here, maybe tomorrow. My memory problem has hit very close to home today; I could not remember my cell phone number. I know that may seem trivial, but that's something I've never forgotten but today...well...I was stuck when I was asked for it. This whole disease thing terrifies me at different points in time. I cannot describe my fears as I realize I'm losing my memory of people, places and things...I've always been proud of my ability to remember and memorize, so it's incredibly hard to see it go away so slowly.
Ok. It's 12:58 am and I'm officially tired.
Done. Pray for no attacks tomorrow.
Oh yeah; here is my Facebook page:
http://www.facebook.com/profile.php?id=1456926742
-peace
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