Today was a bad day. I've had many bad days this last year. My energy has been higher than it used to be. I can do cashier work for 8 hours and be ok. This is quite a jump from 3 years ago when I couldn't even do this for a couple hours without really pushing myself. What is really tough for me lately is the depression. About a year ago I started going off 2 very addictive medications...klonopin and methadone. I'm now at half dose klonopin and have been off methadone since new years 2001. This has really thrown my brain into a bad state; and since my brain is allready in a bad state from the fibromyalgia; or whatever it is I have; it is that much worse. I believe there are several things involved here; my hormones, my adrenals, my brain chemsitry, my sleep; all added together there is some serious problems which cause me to feel pretty awful all the time. Anyway back to today's events. I woke up at about 9:30am; walked down to the farmers market and got some vegetables. I also got a book for 5 dollars which is about meditation and also has some psychology stuff in it. I spoke to my friend Tim; who also has CFS; we spoke for nearly 2 hours about treatments and about lyme disease and some other things. I did exercise; which today consisted of lots of stretching, brisk walking; some stair climbing, and running all the way up Ravenspur dr 2 times. Today my spirit was low; but I feel a bit better now that I've written this. My current treatments for my fibro and CFS are a strict diet, and supplements from doctor Kaslow. Allthough I first saw him in Feb. 1999; I've only been under his care on a regular basis since Feb 2000. I have a long way to go to good health; but he has helped tremendously to reverse certain aspects of my illness. 2 or 3 weeks ago I began NDF mier drops. This is a product which is great for getting toxic metals out of the body. I also tested high for mercury and uranium from a hair test; so we'll see how it goes with this product. So far I've seen some slight progress but no major changes yet.
Sept 28, 2001 Some changes have taken place since my last entry above. My health has progressed a little. The NDF mier chelating drops turned out to be of little benefit and my doctor instructed me to discontinue it. September 11 was a horrible day. As usual I awoke feeling extremely groggy and wasted. I came out to the kitchen to get a drink of water; and as I was driking my mom said in a serious tone "we've been attacked....thousands of Americans are dead" I dont recall her exact words but it was something to that effect. She then went to her room. As the day unfolded I watched in shock as every channel showed the destruction.....planes filled with passengers ramming into the twin towers and the towers collapsing...thousands dead.
So now we (the U.S.) is at war with the afghans; the Russians got their asses kicked by them; with all their military might they stil got hosed by the Afghans in a bitter 10 year war. Hopefully the U.S. will fare better. As for whats been going on with me....what I've been doing the last couple of weeks is an herbal formula designed to kill one of the strains of mycoplasma. I had done this 18 day treatment a couple years ago and it had helped then....I knew that mycoplasmas are hard to kill off completely, reasoned that whatever I had killed had probably grown back, and proceeded with the formula. All symptoms have improved a little; the most noticeable is that brain symptoms. The OCD is less severe than its been since going off the methadone nearly a year ago and that feels great!!
Has been a good week so far, (today is Wednesday); well...a good week for me....a horrible week for a well functioning person. My work hours are working out pretty well. I'm cashiering 25 hours per week; and have weekends off. I can sit down at the jobs and at the ne in Palos Verdes where I live I have cable TV. The worst symptoms lately have been depression, horrible concentration, drowsiness, bad stiffness throughout my body and joints, and...why go on? My bod is a mess but all things considered it is better than a few months ago; and the overall trend the last 2 years has been good; albeit painfully slow. I still feel "dead" inside; have glazy eyes....only a PWC knows the feeling....that is one symptom I cannot tolerate well; being the surfer, runner, ALIVE, such a lust for life and adventure....its been this way for 6 or 7 years now....and I struggle to keep the faith that it will one day be better. "Faith, NOT Fear", a woman has been posting this at the end of her emails to a posting group I'm on....I try to adopt that motto but it is difficult. To LIVE a motto like this when your gut wrenching brain and body problems are elusive in origin, can potentially spiral downward to unforseen depths.....it takes a very high level of courage and inner strength.
SO what else? I saw my dad on Monday and we saw K-PAX. Its a pretty good movie; I'd give it a 6 on a scale of 1 to 10. I think my dad liked it more than I did. As usual it was great seeing him; our minds think very much alike; although his IQ is beyond mine at 158...yikes!! Mine used to be 148 when I was healthy but God knows what it is now with my severe concentration deficits. As usuall I whined a bit more than I should have about my struggles with the FMS and fatigue; but otherwise had a lot of fun and schooled him in the game of pool.
Feel like a walking dead person as I have for the last 6 years but making the most of it. I feel perhaps 20% alive but that is my reality and heck; 20% is better than nothing. For a change I did a lot this weekend. I attended a lyme support group meeting. Everyone there is really friendly. They all think I have lyme and urge me to get to a lyme literate doctor, (LLMD). Many of the people at the meeting were mistakenly diagnosed with fibromyalgia and arthritis an went for years before being properly diagnosed with lyme disease. Most of them are significantly better. I'm happy for all of them; but also saddened by the multitude of other people out there who have chronic lyme and are not getting treatment. It seems that at the moment a certain percentage of FMS, arthritis, and other conditions are in fact lyme disease; but the tests aand doctors simply aren't catching them. The lyme controversy is something that is on my mind very often....and unless I see a real acceleration in progress in my current natural approach to my illness I will likely go to an LLMD and either rule out lyme, or get diagnosed with it and proceed with treatment.
This last weekend was awesome. I saw my good friends Chris and Ben, guys I've known since childhood. Chris and I used to go surfing together for half the day back in highschool; we still talk about the current swell or new wetsuits or other things going on in the surfing world. On a day when I was feeling better than normal we went out at Torrance beach for about an hour back in June; the surf was crappy but we still had fun. Anyway back to the weekend...Saturday night Chris and I rented "Road trip"; I laughed harder than I have in a while; that movie was great; it was on sale for only 5 bucks at blockbuster so I actually bought it today. On Sunday Chris, Ben, and I drove up to 3rd street prominad in Santa Monica. There was tons of people as usual. We played air hockey at Yankey Doodle's; and walked around for a while & just talked a lot.
Shortly before the end of my last entry I began 2 supplements which had helped me previously but I had gone off of because my doctor thought they would'nt help anymore. One was magnesium oxide and the other was a detox supplement. I've since gone back on both and my symptoms have improved somewhat as a result. The detox supplement has an interesting effect on my body. Once I've been on it for a few weeks I'll gain about 10 or 15 pounds and not need to eat as much to maintain the new weight. Its an excellent supplements since without it I have an excessively low body fat level. other news regarding my health is that I've arranged for my HMO to be changed to a PPO. What this means is that I'll be paying a higher monthly bill, but my health insurance coverage will be much better. Dr Kaslow will be totally covered. Whats best is that the leading lyme specialist in southern California is also a provider on the plan and I have arranged to see her in late january! I was one of the last patients to make it in before they stopped letting new patients in for a while. The new insurance will pay for all the best lyme tests. So my plan is to get these tests and have the lyme specialist look them over and go from there. For people with chronic lyme the addiction of antibiotics to their regimin can make a dramatic difference in the success of their treatment.
On Thanksgiving I went surfing at the Palos Verdes cliffs at a place called Exiles. Its a place thats usually not real crowded. There's a lot of sharp rocks; but I've never had a problem with them. The waves were about 5 feet and very clean. I was only out for an hour. My first ride was the best. Riding a wave is so amazing...the power under your feet is incredible...hard to describe to a non-surfer but the best comparison I could think of would be to imagine going down a steep water slide and then have the slide chase after you....ok bad analogy but I cant think of anything better. After the hour I came in and was so exhausted it was as if I was drunk....not a good situation when you have to come in through sharp rocks and then climb up the side of a slippery, muddy, rocky 30 foot cliff. Thankfully I made it to my car without injury and got home. Despite the exhaustion the surfing was a great experience. My life lately has been working 25 hours per week cashiering, and sporadically hanging out with my friends and family. There's a certain part of me that exists deep down, this primal force that NEEDS to be expressed....in surfing, in dancing, in doing crazy and impulsive things. All of the symptoms...the fatige, stiffness, depression are difficult, but the truly horrid thing is walking around like a zombie from overwhelming fatigue, when DEEP DOWN a part of me is screaming to be let out of this body. Nobody can hear it, nor can they see it for a look into my eyes shows only fatigue and despair. Occasionally, if one looks closely the glimmer of passion and electricity takes over, but it does not last for long...the fatigue is too powerfull. I believe that for certain people the experience of being chronicly sick or otherwise unable to express themselves is a cause of the utmost heartache.
MERRY CHRISTMAS!! IN another week it will be exactly one year that I have been off of methadone. There's a few reasons why this is so significant. First; there came a point around the beginning of 1998 when my body really started to fail energy-wise. The flu like feelings of fatigue, joint stiffness, and depression were getting so severe that I can't really describe it with words. The methadone did something to my system; modulated my immune system or something....that got me to a more functional point where I didn't just want to lay on the couch all day. I was totally dependent on this addictive medication for the next 3 years. Without it I felt so horrible that is would have been literally like having a bad flu everyday. I was also on klonopin which helped my symptoms. So it really was a blessing. Fast forward to Febraury 2000 with dr Kaslow. With my holistic doctor I had gotten to a point in August 2000 where my body was able to function without the methadone. With the knowledge of methadone's heavy toxicity in mind I decided to start lowering the dosage for both it and klonopin concurrently. Let me tell you something about methadone. Its what they give to heroin addicts. It is strong stuff. It is possibly THE most addictive legal pill a person can take; both physically and emotionally. Many heroin addicts say that kicking heroin was hard but possible; but that kicking methadone is something that is just beyond their power. Of course heroin addicts often take upwards of 100 mg per day; and I was only taking 10 mg per day. All the same, the first day I thought what the hell; I'm gonna just stop taking it and see how long I can go. I also fasted that day. By 10pm I started eating but still hadn't taken the methadone. I felt cold and sick. I tried to sleep but parts of my body kept jerking and itching. I tried to ignore it but it wouldn't stop and seemed to be slowly getting worse. My body was really craving the stuff. I knew there was no way I'd get any sleep feeling like this so I took a pill, let the warm feeling rush over me and got to sleep a little later. The next day I took the methadone; but instead of the entire 10mg pill I only took 3/4 of it. I also started lowering the klonopin dose & eventually got down to 0.5mg; what i take now. This tapering off worked well to avoid the physical symptoms; but emotionally the nightmare was just beginning. Even though I was taking 75% of my normal methadone dose the depression got a lot worse. (depression was allready a problem from the illness itself). I began to experience first hand obsessive compulsive dissorder.(OCD) I would get a thought in my head of no real importance, and it would explode like a fireball in my brain.....that guy I had an argument with 3 years ago, was I wrong? should I call him and apologize? .....should I go into work today at 5pm or 6pm? Perhaps after sitting and thinking about it for 3 hours I would come to a decision.....and as the summer ended and I headed toward winter I slowly and steadily kept lowering the dosage....7 mg....5 mg....and around New Years I went from half dose (5mg) to no methadone. I believe new Years eve was the first day I went the whole day without it. I remember being sporawled out on my couch feeling horrible but also proud of my accomplishment. Mercifully the physical symptoms of withdrawl only lasted about one week. The shaking muscles and sick feeling were very annoying but bearable. The emotional symptoms were severe. The obsessive compulsive thoughts were with me most of the time and more severe. The depression was severe. The obsessive compulsive thoughts are like when you feel tremendous guilt about something and it affects your stomache.....feeling that way most of the time and about really insignificant things. I started reading books on psychology and OCD. After reading several books and with my own knowledge of brain chemistry I knew I had a serious deficit of seratonin in my brain, followed by dopamine deficiency and other good chemicals. But at the time I was obsessed with regaining more health and I believed that powerfull medications like methadone would compromise my progress with dr Kaslow. The first month off of it was the worst; and the whole year was really highlighted by severe depression. But I have seen my brain slowly getting better month by month. My brain is better now than it was a year ago, but there is still a long way to go. I believe that the illness is stunting the ability of my brain to get back to a better state. Sometimes I think about going back on both meds; back to my normal dose. If that seems like the best thing to do then I'll do it. But for now I'm just glad I made it a year without the methadone. Whether I decide to go on it in the future or not...either way its ok. My faith and my sense of humor have been invaluable in getting through the last year; as has my family.
The new year is here; and just so no one feels bad because they had a bad time or didnt go out...I actually got a fever and just stayed home and talked to some friends on the phone and watched the twilight zone marathon. I caught my favorite episode "To Serve Man"...if you ever see that episode look at the forehead of the alien.....does it look like a butt or is it just me? I've also been doing a lot of reading lately; my finance book from college, my marketing book, and today I began reading "The Longest Day", which is about the D-Day invasion in World War 2. Its a really good book so far. All I really knew about D-day was what was shown in Saving private Ryan. The book details the events leading up to the attack from the point of view of both the Allied forces and German forces; and provies a glimpse into the minds of the leaders of each side as they prepare for one of the bloodiest battles in history.
As the new year begins to unfold I'll be exploring some new treatments for the fibromyalgia. My health insurance is now a PPO (personal provider organization). The monthly premium is quite a bit higher but A LOT more is covered. Dr Kaslow is a prefered provider which means I only pay a $15 co-payment when I see him. I switched my appointment from late december to January 7th to take advantage of this. I will also be seeing the best lyme literate doctor in southern California to get a full lyme work-up and see how the tests come out. I lucked out here as well as she also is a preferred provider. If she believes I have lyme disease it will be an awkward situation. While nutritional and detox treatments are often utilized in treatment of chronic lyme disease the main focus of treatment is long courses of antibiotics. I would be reluctant to try this but after 7 months of talking and emailing countless people and reading a book which addresses chronic lyme treatment and obsessing over it I've decided to go to the lyme doctor; see what she and the tests have to say...and just go from there. Additionally, on my visit to dr Kaslow I plan to discuss with him how we're going to detox the mercury in my body. After a hair test showed levels 3 times the reference range for mercury and uranium I tried a new oral chelating product called NDF Mier Chelating drops (chelating means a substance binds and drags it out of the body) but after 2 months of this there wasn't any progress. What I want to do is another test for the heavy metals; and if it comes out high again to try another method of chelating the metals out of my system.
Not too much has changed symptom wise since my last entry 4 weeks ago. But I have planted some seeds in my treatment regimin that will hopefully turn out well. I travelled 124 miles to see the best lyme specialist in southern CAlifornia. From countless hours talking with people and doing research I've found that some people who were diagnosed with fibromyalgia actually have late stage lyme disease and for whatever reason the diagnoses was missed. She thinks there's a good chance that either lyme or some other microbial agent is a big part of my illness. She ordered many tests including a full lyme work up from IgeneX, other micro-organism panels, and hormonal panels. In one of the tests I take heavy courses of antibiotics for a week and then give 3 urine samples. The antibiotics should kill some lyme spirochetes if I have them and then the lab checks for them in my urine; or something like that. Many people with lyme feel a lot worse when they take the antibiotics from the die off of spirochetes in their systems (indicitive of lyme); but I unfortunately I didn't experience this. In about 3 weeks the test results should be in and we'll see what the doc makes of them.
Feb 28, 2002 I got most of my tests back. The non-lyme tests have come back normal so far. My comrehensive thyroid tests all were normal. Hepatits B and C and tumor necrosis factor were all normal. My lyme tests are as follows: Lyme dot blot assay: negative on all 3 samples; western blot: 6 bands positive. Babesia and Ehlrichia were both borderline. I also had an ELISA test done but have not gotten the results yet. babesia and ehlrichia are co-infections. The tick that transmits the lyme bacterium sometimes also transmits one or both of these co-infections. Although testing is not the best for lyme at this point the western blot is designed so that false positives are very rare. The CDC considers 3 bands to be an equivicol result and 5 or more bands to be a true positive. The western blot is actually used to confirm other tests when they come out positive. So at this point everyone in the lyme community is certain that I do have lyme; while the others I ask usually don't know one way or the other; mainly since the LDA came back negative and I live in southern Califiornia; where lyme does occur but is less prevelent than the hot spots in the north east United Sates. For one of the tests I did a week of flagyl and my symptoms did feel a bit better as a result. because of this my Lyme doctor said I should try this antibiotic (flagyl) first to treat the lyme and see how it goes. I also recently sent in blood to test for mycoplasma infection. After my lyme doctor receieves this we'll take treatment a step further. If the results are positive then a 6 week course of minocyclene (another antibiotic) will be the next step. If the test comes back negative then she'll likely add amoxycillin to my regimine. I suspect there is a good chance that I do have mycoplasma infection as part of my clinical picture for various reasons. For one I tried an herb formula a couple years ago for a mycoplasma strain and it did provide some benefits. Secondly, I dont know the exact number but something like half of people with fibromyalgia and CFS have mycoplasma infection from all the reports I've read. The reasoning behind taking 2 antibiotics has to do with the different forms the lyme spirchete takes in the body.....flagyl will kill one form while amoxycillin will kill another form. While I'm excited about the positive test result I'm also very apprehensive about long courses of antibiotics. The imminent risks is mainly a serious disruption of the bowel flora and yeast infections in the bowel. The more long term (and more speculative) risks are that of stronger bacteria surviving and thriving in my system as they adapt to the antibiotics. Also there is the risk of developing antibiotic resistant bacteria; so that potentially if I was on antibiotics for years and then got pnemonia or something where I really needed antibiotics in a crisis they might not work as well. However after talking with many people who've been on antibiotics for lyme for years and additional research I've done I haven't seen this. I need to go to work now but I have a lot more thoughts to write down as concerns whast going on with treatment and the question of lyme vs. fibromyalgia/CFS.
Just over 5 weeks on minocyclene (200 mg twice/day) and flagyl (500mg twice/day) and all symptoms have improved a few notches. Depression seems less; can do more exercise; voice is stronger; adrenals slightly stronger. Gains are small however. Main side effect of meds is from minocyclene; makes me even more keyed up than normal and then I get really sleepy the rest of the time but I'm reluctant to switch since it is doing something good. I dont know if I have lyme or CFS but I do feel now that microbial infections are a part of my illness picture and will see how it goes in the following weeks. Upset about the fact that I took a liver test 2 weeks ago to make sure liver enzymes weren't elevated (antibiotics can do this) but still havent gotten the results. Hopefully on Monday. The focus of my treatment in the near future will be the lyme and heavy metals. Despite the fact that I've never had a cavity in my life and no fillings my blood and hair samples reveal high levels of mercury, with hair analysis also showing high levels of uranium and copper. The only way to get rid of the metals is to "chelate" them. What a person does is inject or orally take a chelating substance that binds preferentially to the metals and they then exit through the urine. Unfortunately this scenario can backfire if a person's excretory sysytems are not working well. In this case what may happen is that the chelating substance will bind to the metals and then re-distribute them to another part of the body instead of out of the body!! Clearly one must approach this treatment maze with the utmost caution. My first step is education. I've ordered Andy Cutler's book on mercury detox. His is considered one of the best books in that field and goes into detail the precautions and different chelation options; their risks and benefits, etc. Before I do the chelation I will also get my detox pathways checked; foremost by doing a liver phase 1 and phase 2 test; and also checking glutithione levels. My co-infections tests were equivicol for ehlrichia and babesia. Ehlrichia is treated the same way lyme is so there's no problem their. babesia is protazoan however and needs to be fought with completely different antibiotics. Since I'm allready on 2 antibiotics for lyme I'm reluctant to add another 2 for babesia. HOWEVER...top lyme researchers have found that if one does in fact have babesia it is difficult to treat the lyme. What I'm doing now is an herb which has successfully gotten rid of babesia in several people; called artemesia annua; 1 500mg pill 3X day. To see if I do infact have babesia I will likely utilize a lab in Florida named Bowen labs which can more accurately determine if I do in fact have babesia infection. Either way I'll likely stay on the artemesia just in case. If the bowen test is positive and the artemesia doesnt seem to be doing the trick I may move the more aggressive treatment with the pharmecuetical weapons....mepron and zithromax for 1 to 5 months. It seems best to try the herb first as I know of others who have cleared babesia infections with this herb and would be much better for my overall health than adding 2 more antibiotics.
I have completed more tests to try and ascertain what is going on in my body to make me feel so awful. Most of the tests have returned normal. The ones that are not normal are a high epstein barr virus titre. Mine was 170; the reference is 20 or less. Nearly everyone in the population has been exposed to this virus and has low levels of it in their system. People who have weakened systems; especially those with CFS are often high in this test. Still; my LLMD wants me to do a course of valtrex and see how it goes. The other viruses like HHV-6 and CMV came back negative. My liver test came back slightly elevated; then I took another test and it was even worse. My liver enzymes are about twice the reference range; with the AST at 77 and the ALT at 103. For both of these the reference range is 40 or less. In a nutshell; what this means is that my liver is agitated by one or both of the antibiotics I was taking. The likely culprit is the flagyl; so I have discontinued it. Now for the L-form of the lyme spirochete I am taking a similar but less harsh medicication called tinidozale; and am also taking low doses. The biggest part of my treatment is the IV rocephin. This is the medication that is most effective for many chronic lyme cases; but it is obscenely expensive. The medication itself costs about $6000 per month; and this doesn’t include the cost of IV equipment; or home nursing a couple times a month to help with the IV line. My insurance has covered nearly all of it however and I am extremely grateful for that. I feel stronger after one week of it. Although the gains are not dramatic, I do feel less joint stiffness, less burned out; and since this is the worst thing I have to deal with I'm ecstatic at even a small gain. Because of the elvated liver emzymes I'm at a low dose (1 gram/day) at this time. I'm getting weekly blood testing for my liver enzymes and other tests as well to moniter my immune system and blood chemistry. The downside is that starting June 1st I'll be with a new insurance; probably blue cross PPO. After gathering info on the major companies that offer HIPAA I found this one to be the best of the lot. There is a $1500 deductable; which means I pay cash for the first $1500 of most medical services. Even if I can get them to approve more rocephin they will only pay for 70% of it. What I will likely do is apply to "Roche"; the makers of rocephin. I've heard that they will give it to you if you don’t make enough money and need it. I'll see how I feel after this first month. If I decide I want to try more I'll try to get it from Roche. Despite the fact that my current insurance is awesome and is paying for most of the things I'm doing I'm still left with a decent amount to pay for. For example; most of the tests I'm doing (and there have been a LOT lately) I have to pay 10%; so it adds up. And things like supplements, my strict diet, and co-payments also add to the total. Its very frustrating but for now it is necessary. Many symptoms are still very bad; but some have gotten much better in the last 2 or 3 years. Yesterday I worked 7 hours at my cashiering job. 3 of those hours were during the carwash when it gets very busy and I have to be on my feet a lot. I finished the day without any major mistakes and had energy to spare afterward. Compared to how I was 3 years ago; and compared to most people with lyme or CFS this is tremendous progress. My adrenals in particular feel stronger with the 2 months of antibiotics; like there is less of a load on them, and my voice seems stronger. Mercifully; the racing thoughts have also improved some; a couple of the antibiotics I'm taking ; minocyclene and rocephin, are designed to get into the brain and smoke out any microbes that shouldn't be there. I've been enjoying my time with friends and family more than normal. Some of the worst symptoms remain very bad however. Feeling really imbalanced; as if I had severe jet lag, and the sore joints; while much improved, are still very hard to live with. A couple months ago I tutored a student in finance for 2 hours. I lucked out. On some days my brain would not have been up to the task, but on this particular day it was and I made $40 for 2 hours of work. It felt GREAT to do this; to actually get paid for a real skill I acquired rather than counting out people's change at a gas station. It was, however, stressful on my system. This tutoring has been on my mind as something to try; I also have been thinking about studying naturopathic medicine. Despite cutting my costs and not going out much, getting clothes at goodwill, etc, I still have to ask for lots of money, and emotionally this is very difficult; more so now than ever; but it is unfortunately necessary. There is something that is wreaking havoc in my mind and body; and the optimal strategies to fight it require lots of money. The diet, the supplements, the best doctors, the medications, the tests, all cost money.
Back to my medical treatments; my LLMD wants me to get a babesia PCR. My babesia antibody test came out equivicol; and it is vital that we know if I am infected with this or not. The PCR is more expensive but very sensitive; it will look for babesia DNA from a sample of either blood or urine (I forget which). If a person has babesia and lyme but only treats the lyme they will often not make a lot of progress; however; the treatment is very hard on the body. I've been taking an herb for it; but the standard treatment among lyme doctors is one to 5 months of mepron and zithromax.
Socially....I've been spending a lot of time with my good friend Sonya; and working. I actually haven't been doing too much to write about. Sonya and I saw serendipity; which I REALLY liked a lot. I'm not one who would typically enjoy a romantic comedy but this was just a really good movie. She also got a bonus at her job and took me out to an excellent dinner at marie Calenders here in Palos verdes. One thing I love is a good meal and Marie's shrimp dinner is just awesome. I went to Ohio a couple months ago and saw my grandma and Aunt from my dad's side of the family. I froze my butt off in the 30 degree weather but it was really good to see both of them; it had been close to 3 years since the last time. My grandma is amazing; she is 86 years old. When we went out there about 3 years ago she was in bad shape; was having trouble just playing simple games like kismet; and we wereen't sure if we would ever see her again; but she made an impressive comback and it was an honor to sepnd time with her. We played some games like scrabble; in which I was completely destroyed by my dad and Mandy; but we also played a cool card game called booray in which we all won and lost some. But if I remember correctly I as the one who won the last game we played; which was to determine the true champion for all time.
I've been going to my weekly web page design class (microsoft frontpage) and learning some good web design stuff. I got the PICC line in my arm taken out. I gave the stuff about 6 weeks and it only helped a little. It was definitely a good thing to try while the insurance would pay for it because with long term lyme cases IV rocephin is considered the best treatment option. The cost, hastle, risk of infection, and potential gall bladder sludging with several months of treatment (which can lead to its surgical removal) made it a fairly easy choice to stop; plus the hot weather; when you sweat a lot the PICC line infection risk goes up and the sweat really messes up the dressing. Its great to be able to shower without using duct tape and plastic bags over the arm and being real carefull to keep it clean; keep water out of it, etc. My strength and endurance are still at a better level; but I've been really sleepy and spaced out; overwhelmingly so in fact. I wake up in the morning dissoriented and it takes a little while to focus. The brain problems continue to be a real challenge. At times I feel totally overwhelmed and defeated. Its just not something you really get used to. Certain symptoms, however, have improved. The stiffness in my joints is better, I have better endurance; my adrenals feel stronger. The antibiotics have been giving me progress in one way but increasing the sleepy-spacey-imbalanced feeling also. I've actually taken a 2 week break from the antibiotics to give my system a break; mainly for my liver, and also to detox. I've been researching antibiotics treatment for chronic lyme like crazy in books and the internet but it is mostly over my head. Anyway its been a very difficult few weeks; but I managed to have some fun. Sonya and I had planned to go to magic mountain a month ago when I had the PICC line in; but decided to wait till it was out so I didnt injure myself with the line in the vein. On Monday; after Sonya got off work at 1pm we decided to go; after I had called and learned that it wasnt crowded. So we got there at about 4pm; went to viper and there was literally no line; there were 2 people in front of us!! So we went on that one twice and then got on all the other good rides. I was really spaced out but was ok on my feet for the whole 6 hours we were there. They have this new ride called goliath; and I swear someone is going to get hurt on it. Its in a league of its own. The first drop is 255 feet!!! Almost a football field; and once you hit the bottom you're going 85mph. Its a really smooth ride; like being on a water slide; and the speed and G forces for the rest of the ride are amazing. There were some other new ones we went on that were great thrills also. Superman the ride blasts you from 0 to 100 in a few seconds; you build up tremendous speed; then the coaster goes straight up about 250 feet; then you free fall backwards to where you started; the acceleration is awesome! The other cool thing i did was to go see a fireworks show at Wilson park with Sonya. I've been there before and know exactly where they break the fireworks, so we staked out a spot right under wher they blast the fireworks and were so close that the whole sky lit up and you could feel the the blasts in your gut; like a really loud base sound.
September 13, 2002
My strength and endurance have improved some. I just did a 2 day fast where I had nothing but water a couple glasses of fresh vegeatble juice from my juicer per day. The reason for the juice fast is to cleanse my body and especially my liver. The important thing however is that I was able to do the fast for a full 2 days. The first time I tried to do a fast was over 2 years ago; and I lasted until about 4pm before I felt so weak and hungry that I had to quit. In the last 2 years I have done fasts that lasted a day but was too weak to do anymore. So now I'm strong enough to go a full 2 days without food. My endurance is better and I'm stronger in some ways. The mental and physical imbalances are still severe in many ways though. I can think, speak, and listen 5 times better than I could 2 or 3 or 4 years ago, but my short term memory seems worse than ever. The last year has just flown by, mainly because I can't remember much. I got my hair analysis back and the good news is that many of the toxic metals have gone down. My mercury; which was 3 times the reference range, is now only at the top of the reference range; having gone down a full 67%. Uranium has gone down from 2.5 times the reference range to 2 times the reference range. Copper is still extremely high at 96 (ref range is about 10 to 25), but I've made some changes in my diet so I'm eating less copper and I'm taking other minerals that should make the copper go down after a few months. (zinc and molybdenum). Additionally, I've read that copper toxicity can cause severe mental problems. My doctor ordered a red blood cells analysis; so we'll see how my blood levels of copper are doing. As far as treatment goes I'm still off antibiotics. At the moment I'm focusing treatment on chelation of the toxic elements (copper, mercury, uranium, and others). I've also done a new test which measures neurotransmitters in the urine. With the results dr Kaslow will have more data and may start me on a new supplement.
Sonya has been taking a Chi Gong class; and has convinced me to give it a try. My main interest; well, my only interest is in the healing potential of this ancient art. The concept behind it is that we all have a life force within us, our "chi"; and by doing certain movements and breathing exercises we can greatly enhance this power. So if I'm up to it I'll be going to the free class on Sunday morning. I don't have any major hopes that this will help; but the fact that its free and that it might help and that I have someone to go with definitely make it worth a try.
November 22, 2002
Ok time for another entry. Despite the fact that I feel weakest and most lethargic in the morning I made it to the chi gong session at 8am a few days after my last entry. I felt strong that day; and arrived at Wilson park to find Sonya and a handful of other people standing in a wide circle all facing toward the center. The spot was amazing with lots of grass, trees, birds, ducks, a pond; giving the feeling of being a world away from the city. I didnt notice anything at first; I just did the same hand movements and breathing that everyone else was doing and tried to meditate, or escape from my thinking mind. Incredibly I did it; after a short while my brain seemed to slow down and I could feel the emotions and energy flow though my body much better than I normally do. I felt very relaxed and peacefull; I also felt more alive and aware of everything. Being on my feet and doing the poses was difficult but the second part is done sitting down so that made it easier. The session ended around 10am. When I tried again the following week I could not get into the relaxed state like I did the first time. When I went a third time it also didn't work too well. I plan to do more chi gong but the fatigue makes it a real challenge; as does the joint stiffness. If I have a strong day; or am feeling stronger in the future I'll likely try again, as the first day was a great experience.
My medical treatment at this point is still just supplements and toxic metal detox. As always the supplements/diet are utilized to keep my body andimmune system strong. I'll continue with the detox until I see no more improvement, and at that point may restart antibiotics. The only change since the last post is my endurance is somewhat better. The worst symptoms are feeling detached from my emotions and exhausted emotionally. I was reading a book of illnesses and symptoms from a friend who just finished medical school. Under the Addison's disease section there were 12 symptoms and I had most of them. The ones I had are weakness, apathy, myalgia, weight loss, poor cognition, depression, and confusion. The other ones listed are viral illness, constipation, anorexia, and psychosis. I don't believe I've been tested for this yet. I plan to ask for the ACTH test to rule it out next time I see the doctor. I can't imagine its something he would miss though as he sees a lot of patients with adrenal problems. Addison's disease is a destruction of the adrenal glands. There is no question that my adrenals are burned out to some degree; but this is very common among chronic fatigue patients. Its unlikely I have addison's; but since there is a test for it I'd prefer to know for sure.
December 23, 2002
Today I went surfing! Waves were 3-4 feet, very clean and glassy. I went out at the PV cliffs at a place called Hagardee's. Listen closely to the Beach Boy's song "Surfin USA" and you'll hear it mentioned. It wasn't crowded. There were only 4 or 5 of us out there and everyone was getting decent rides allthough the waves were on the small side. I got lots of waves and finally after 2 hours; completely spent, cleaned both inside and out by the clear blue water, I caught one in and drove home. The feeling of being wasted, doped, and tranquilized is stronger than ever. I despise having to feel like this everyday. I don't enjoy things, my short term memory is horrible; the true "me" seems buried far below the fatigue and biochemical imbalances. My stamina seems better; for the last 2 years I've not lasted more than an hour in my surfing attempts. It took a while for my arms to get sore, for my back to get sore.
My health treatments at this point are mainly supplements. I've actually been less strict with my diet and have not found the change to have much effect on my health. I did a "CRT 2000" test with dr Kaslow. The test looks at how different parts of your body are working. You go into a cold room and strip down to your underwear; then the physical therapist comes in and takes readings from different points on your head and torso which correlate to specific organs. I was told everything looks ok. My system is parasympathetic but should be sympathetic; meaning (I think) that my immune system is a bit hyper-active and needs to sloooowwwww down. Dr K thinks there's something misaligned around my head/neck area and thinks I should see an osteopathic doctor. Bascially, for the time being we've hit a plateau in treatment; so instead of seeing him again in 3 months I may skip that apointment and go in 6 months or a year from now. All we're doing at this point is heavy metals detox. I talked to him about the antibiotics and he thinks its a bad idea. I asked him if there could be immune system damage and he said he doesnt know and its possible. Dr Hoang, another holistic doctor, thinks that if i take high dose antibiotics for more than a few months I'd risk immune system damage. My lyme doctor obviously doesn't think so. The guy who works where I do who just finished medical school thinks antibiotics are basically harmless and thinks that if they're helping me I should continue. One argument FOR long term use is that they give antibiotics to people with acne and rheumatoid arthritis for years; although the doses are low and I wonder if these protocols possibly do have long term consequences. Clearly; I need to learn more since antibiotics DO provide relief for many symptoms over a long period of time and could potentially be a very useful tool in combating the fibromyalgia, lyme, or whatever it is that's making me feel so rotten.
Employment-wise....still working 16 (or slightly more) hours per week at my sit-down cashiering job. Sometimes I think how about 3 years ago I'd be completely spent after my 4 hour shift. Now my stamina is much better and the 4 hours is fairly easy; but the wasted feeling is worse than ever.
Amazing...that its been 4 months since my last entry. My short term memory is working very poorly and it definitely doesn't seem like 4 months. Symptom-wise I'm not much different than 4 months ago. The fibro pain/stiffness is at a good level, as is my stamina. The most severe and worrysome symptoms continue however and are slightly worse....such as poor short term memory, feeling spaced out, and what is the most severe is a feeling of a powerfull physical stress which makes my body feel very heavy. I feel like a person who has gone a night without sleep, and then swam 5 miles in a race and is totally spent physically and emotionally. He needs to do nothing but sleep and rest for a day or so and then he'll be back to normal...only for me resting doesn't get me out of that "wasted" feeling.
Work-wise I'm the same...part time cashiering at the local gas station. Since I'm always reading books and doing research on nutrition I've been thinking about going for some kind of degree in that field. My plan is to get certified and then charge people for one on one consultation. Anyone would be welcome for a session but I would especially want to help people with fibromyalgia and CFIDS. The sceientists and most doctors think that any treatment with vitamins and herbs and such is quackery; and to give them credit there are not many real studies to support such remedies in FMS/CFIDS. There are, however, two important things....one is that there have been very few studies in the first place; and second is that there is a huge amount of anecdotal evidence that these alternative treatments help. I'm living testimony to this.
As far as my treatments go I'm doing 300mg of minocycline per day. (200mg in morning, 100mg evening); and may add biaxin at some point. This is for chronic lyme disease. Additionally I've begun 3 supplements. The first is "transfer factor" in which the immunity to certain bacteria and viruses is transfered to me through a pill. This is something my lyme doctor has recomended. I didnt do it at first because of the cost and there didnt seem to be much science behind it. What got me to try it was that the company has a money back guarantee and I have a friend who did get his money back when the product didn't work for him. The specific pathogens it works against are lyme, co-infections, EBV, CMV, HHV-6 and there may be some others. Another product from this same company also with a guarantee is called immunopro. This is a non-denatured whey protein. The purpose is to build up intra-cellular glutathione levels, which can be severely low after years of CFIDS/FMS. For this product there has been some studies which looked legitimate to me. The studies were done by dr Paul Cheney; the lead CFS doctor in the U.S. The thrid product is called "Experience" from Awareness corporation. This is a multi-level marketing product and I normally stay FAR away from these but a friend of mine says she's had great results with it AND she promised me my money back if it didn't help. It is a colon cleanse product with about 4 herbs in it and you take 1-3 pills before sleep. since its money back on all of these I figure the only thing I have to lose is the shipping costs....we'll see in the next 2 or 3 months if anything comes of it.
There is one and only one single solutary purpose to this journal entry. DO NOT see The Matrix 2!! My pop and I walked out in the middle of it. It is one of the...no it is THE worst movie I've ever seen. Then to compound my frustration my pop kicked my ass at miniature golf by like 30 points. Actually I was only down by about 18 points, when the pretty woman with the playboy shirt walked by; churning up the testosterone and distracting the hell out of me; and I fell even further behind.
Current meds: klonopin: 0.5mg/night; now back on methadone for the last 2 months at 7mg/day. This is a very serious and addicitve med to be on but it helped tremendously with many symptoms; most notably fatigue. They say the body of a fibromyalgia person is like an engine idling at 30%; instead of 5%. I feel this way; and feel like the methadone slows me down from the 30% to about 15%....stil on overdrive but much better. The dose is very low; with a heroin addict taking up to 100mg per day and some chronic pain patients taking from 20 to 70mg/day. I'm also on minocin 300mg/day; and doing many supplements from dr Kaslow and from the nutrition store; and a few days ago added the herb "coptis"; which is supposed to help kill the cyst form of lyme disease. The transfer factor does not seem to be helping me; if I dont see anything after the 3 months is up I will ask for the money back (there was a money back guaruntee).
Work-wise am doing part time cashiering up the street as usual and am keeping a good eye out for any opportunities that arrise to make more money or get a better job where I can apply a minimum of exertion to maximize my hours and get paid the most for it. Full time is still too much of a strain on my system but I will continue to look for better part time positions than what my current one is.
Allthough my short term memory is still totally whacked and I feel tranquilized to a certain degree this has been a cool month. I finished my dreamweaver class, and what is really cool is that I began giving swim lessons for $20/hour. Because of high school waterpolo and the intense training it requires I've been a strong swimmer since the age of 14. A ilttle over a month ago I befriended an English woman in my building with 2 kids; age 8 and 11. I would sometimes hang out with them at the pool and had a blast teaching young Luke how to run and surf a body board across the pool. I also noticed that both kids were athletic but had little swim talent. The mother asked if I knew anywhere that she could take her kids to learn to be better swimmers. I didn't but when I checked it out for her I was astonished.....one place charged $30 per hour and had 4 kids to a class....the other place; an exclusive racket club with a 25 yard swimming pool charged $60 per hour!!. So I told her these options; then added that I would teach Luke and Emma for $20 per hour total. The kids were there and said they wanted me to teach them and she said "there's your answer" in her crisp English accent. So from there I taught them about twice per week for an hour each session. And since then 2 other parents have hired me to teach their kids to swim. It is just an incredible feeling to get paid well for something and then watch as the kids get better with each lesson. Its a blast to work with them and stands in sharp contrast to the $7/hour I make at the gas station and at which I basically feel like a robot. I dont know if I'll be up to doing this again next summer so for now I am enjoying the moment and really putting all of my focus and energy into turning the kids of these 3 families into great swimmers. More to come.....have to go to my gas station job but then the weekend is free baby!
What would I give to be rid of these horrid symptoms? TO wake up and feel normal....to have enough energy to work 8 hours, to be able to go surfing and not feel wasted. To go just a couple hours each day and not be exhausted and medicated......I'd give a lot; thats for sure.....20 years of my life? one of my limbs? I hate the fatigue in one sense because it has taken so much; I love it in another sense because the only way the spirit grows is through trial and struggle. Obviously I am feeling similar to the last entry. There are minor changes; slightly worse memory problems and feeling zonked out; but with an adjustment of medication some of the brain problems are improved, including speaking/listening and concentration from taking half-dose klonopin during the day.
I'm treating the fatigue like a person in chronic pain treats their pain....flowing with it the best I can and trying not to let it beat me emotionally. I've begun a creative writing class at Torrance adult school. I was shocked to walk in to a room full of people nearly all aged 60 to 80, but they welcomed me and smothered me with attention and affection and I could not resist staying in the class. Its a "write your life Story" class....should have known; I'm up to age 15 with about 17 pages on my floppy disk. The seniors in the class seem to really get a kick out of my stories from my youth.....the women especially were enthralled with the tale of my first kiss at the age of 12.
The other major thing thats going on is that I landed a part time tutoring job. Allthough I just tutor 7.5 hours per week there is a moderate level of strain I'm feeling. I plan to give it another week and decide at that point whethor to stick with it. The decision usually isnt too difficult. If I am over-working myself my body responds with lowered appetite, worse fibro symptoms, more anxiety, and a general feeling of being overwhelmed. I would hate to quit such a great job as these opportunities don't come up very often; I've only worked 2 days so far so I'll see how I feel next week. The good news is that even if I do quit the weather will be warming up soon and I should make some good money this spring and summer with my swim instruction.
Saturday night (or technicially Sunday morning) and I have recently returned from my 10 year highschool reunion. There were not as many people there as I expected, about 100 to 150 I would guess. It was quite amazing emotionally to be around so many people from your youth. The feelings of genuine care for one another was awesome to experience. I talked to a lot of people who I never really spoke to in school and they knew who I was!! NO clicks or "in crowd"; just lots of positive energy....aside form family gatherings the most heart-warming experience for me in a long time....to be around people you've known since grade or middle school. I hope to re-hash some old friendships with some of the people I met today. Everyone got there between 7 and 8pm and we had dinner and some had drinks from 8;30 to (9:30; then the DJ played good music but no one danced (LAME!!!) except me and like 3 other people. the gig ended at about 11pm.
The adjunct instructor position at Marymount College is going very well. I never knew tutoring would be a job for me but as I refine my techniques and improve and help students the job has become a real source of satisfaction....something I wouldnt mind doing for free if I didn't need to make a living. My private math turoring business in Palos Verdes is off to a decent start these last 2 months; with 5 weekly students allready from flyers alone. Only one student has stopped seeing me who started so far and it was becasue she dropped out of her college course. I hope and expect to see a leap in my business in the next 3 months....as I finish up learning calculus one and then calc 2; and as my big verizon phone book ad comes out in about 3 weeks.
Wednesday morning now....today I dont have writing class so I am chillin in my apartment until 1:45 when I begin my 3 hours of tutoring at marymount. My private tutoring business has gone better than I could have imagined. I am now booked up with about 10 hours of private tutoring (in addition to the 10 hours at Marymount). I am now making enough money to get my own place and am currently looking for either my own apartment or a roomate to share a 2 bedroom place with. Since age 22 I have split a 2 bedroom apartment with my mom; which has been embarrassing, especially the last couple years at age 27 and 28; and has cramped my style to the extreme. Allthough the fibro symptoms are relatively similar to the last entry my spirits are even higher as I now feel so much better being able to take care of myself without the aid of my parents. In early May, 2005 it will be the one year anniversary of the last time I asked my parents for money. I have gone into a small amount of credit card debt ($3,000) to help make this possible but I am now making enough to get back to even by July or August. On Saturday my father, his wife Janice, and I are going on a 5 day vacation to Dayton, Ohio, to visit my Aunt and my 89 year old grandmother. I can't wait to see them. My grandma, whom I still affectionately refer to as "nanny" has an incredible will. She stays in a retirement home but does most things on her own and most weeks walks about 6 miles total.
So much has happened in the last two months I am not sure where to begin. There will probably end up being a few entries to cover the period.
Shortly after my last entry I accompanied my father and Janice to Ohio for a few days. We had a great time there with my aunt Mandy and my grandma Martha. Janice took some cool pictures; which I'll try to scan onto a disk and upload at soem point.
Towards the end of March there was one ad on the craigslist.com website which caught my eye. It was a roomate wanted ad; in which a 26 year old was renting out a room in his 2 bedroom apartment in south torrance for $500 per month. This deal seemed to good to be true. Most rooms in that area are about $750. I figured the room was likely tiny...or smelled bad, or maybe had a nice family of cat sized rats inhabiting the closet....but when I called the guy seemed friendly enough so I decided to go have a look. The room was much larger than I expected....about 11 by 15 feet. It smelled good; there seemed to be lots of people my age in the building...and the guy renting it seemed real cool. He said that about 5 other people had looked at it and that since it was allready the first of the month he would give the room to who-ever caughed up the $1000 first (500 for rent and 500 deposit.) I had withdrawn this amount in the rare chance that it did turn out to be a room that I wanted and so after about 10 minutes of talking I wrtoe out a receipt for the first months rent and deposit; paid him the cash and had him sign and date the receipt. FINALLY I HAD A PLACE!! I was so ecstatic to be now living in an area where there were people my age....parties....bars...the beach 3 miles away. And of course I was out of my mom's place! No more sneaking in a girlfriend....or talking super low on the phone at night. I felt a sense of freedom and accomplishment. I had been trapped in Palos Verdes and had found a way to escape finally. To me Palos Verdes was like a city sized retirement home.....everyone seemed to be wither a senior; or too involved with family for socializing; or a kid. The next day; April 2nd; a saturday; I rented a U-haul and moved all the big stuff down to the new place. Then on Sunday I moved the rest. It was a bit wierd in the new place for a few days..but after about a week I really felt at ease. My roomate Henry and I got along well and I got along with his frends to. That particular area of torrance is situated so that a strong ocean breeze blows through often and keeps the air very clean and fresh...something most probably dont notice but is important to me.
The tutoring business continued to do well. I remained with a few extra hours in addition to being at marymount; and then in late march I got one student who would occupy much of my time as a private tutor. The book and his professor didnt make much sense to him but when I explained the math he got it pretty quick. I ended up tutoring him for a total of about 30 hours in the 7 weeks from late march to mid may; so with his; plus my other students; plus my hours at marymount I had a near full schedule. In my next entry I'll write more about my symptoms and my plans for the summer as I begin my 3rd year with my private swim instruction business.
First let me apologize for having gone so long without an entry....nearly 10 months yikes!! For anyone who actually reads these entries or used to.
Well I am now 29 years old. My focus as usual is on my health and on my business as a private math tutor. The summer of '05 began slow and continued slow throughout until towards the end of July. With a spurt in business I spent the last 5 weeks of summer in the pool 15 hours per week; working my tail off but making good money for the first time in my life. I'll tryto get a couple pictures up as my tan and blonde hair from all the sun changed my look quite a bit. As school began I lost all of my swim students...and as Marymount college classes commenced I began a blitz of self promotion to get private math students......if things went as planned this would be the bulk of my income for the next 9 months. The first 6 weeks brought little in th eway of new students and I did begin to sweat it a bit with the money and time I'd put into the ads. By early October I only had 3 pupils. As it was not one of my pupils from the previus year called to request me back for tutoring again this year. Then it happened. In one week around the middle of october I got 3 new students. The following week I got two more. By the beginning of November I was booked up with 12 hours per week at marymount and another 14 or so in private tutoring. After several years of scraping by it was quite a feeling to nt have to worry about money and actually be able to buy my clothes froma place other than the salvation army!
More than anything I felt glad that when my parents were asked about me they could say something....ANYTHING other than what they had been sayting from 1999 to 2004 when I was making $400 per month at a gas station. They could now say that their son was on the math faculty at a private college and was running his own tutoring business. This more than any money i made from the endeavor brought a smile to my face.
Besides work there hasn't been any eaeth shattering news to report in my life. It was great to visit my grandma in Ohio for her 90th birthday. Though living in an assisted living center she is going strong....walking up to 8 to 10 miles per week (!!) and keeping busy with her beloved cryptograms. We write each other letters often as does the rest of our small family.
Healthwise I'm similar to the last entry. I'm on 3 different medications. I HATE being on medication but the fact is that without them I would be unable to function in my job and would have other brain problems such as insomnia and severe cognitive issues involving speaking and listening and some ADD that would make a person quite resluctant to be in my company. I can speak and listen much better than when I wrote the last entry; thats one thing which has improved. I believe this has contributed to the boost in my business. When a prospective client calls looking for a tutor; especially one with a lot of money....they probably tend to call many places before making a decision. By speaking and listening in a more eloquent and intelligent way the odds that a caller will ultimately choose me over the rest goes up quite a bit.
The physcial, mental, and emotional fatigue remains a struggle to deal with every day that I wake up. I'm incredibly thankfull that I am able to work part time and that I've found an occupation that has worked out so well. My mood is volatile, however, and my feelings about my life can range from incredible gre4atfulness of what I have, to a powerfull resentment over what could have been without the illness....the surf trips, going out all night. the career, FEELING well and off medication. As it stands now I am able to do about 6 hours of tutoring in a day before I hit the wall if I have breaks between the lessons. Put me in a classroom in front of 30 people though or on my feet for just one hour and that wall slams into me good and hard and I'm done physcially and mentally. There's great frustration at this physcial weakness......if I was living in a time pr period where i had to do physical labor or even something where I simply had to stand up or exert any real physcal effort I would surely not make it. To someone who takes great pride in his physcial prowess derived from a youth filled with sports and great endurance this is often difficult to come to terms with at an emotional level. I suppose though that writing this can only help.
As has been the case for the last several years my system feels very "off"; like I've been tranquilized or drugged......20% alive as I said in a post dated a few years back. Allthough I am on some medication this feeling would be there even if I went off all meds.....just feeling blah, out of it, emotionally like a zombie. My guess is that it is from a very deep fatigue. If I do certain activities it gets momentarily worse. About a month ago I swam 100 yards out in the ocean and became really disoriented. Another time I was in a jacuzzi for about 20 minutes and when I stepped out I nearly fainted. In both cases it took my system 15 minutes or so to get back to normal. That wasted feeling is always there and is perhaps as bad as it's ever been. Some symptoms are MUCH better than they used to be. My pain/stiffness was quite severe around age 19 to 20. My cognitive skills were horrible for a few years there from age 19 to about 22. I suppose I'll have to just try different alternative treatments and wait and hope that at some point I will get better from this current nasty symptom of feeling so fatigued and zonked out.
I certainly don't enjoy much....relationships get strained, I can't make decisions....it's truly frustrating. Medication doesn't help much...going off, taking more, whatever I try it doesn;t change things a whole lot.
There are things that do really make my life full though. My family, as always, has been so supportive. As a result of what I've been through I feel I can communicate with anyone...my parents, my grandma, the kids I tutor in math...and get to their level. It's a depth and point of view that can only come from having been through a great deal of suffering.
I write one entry after another and wonder if I'll ever feel some modicum of normalcy in my life. As hard as I try to find happiness and joy and flow with my condition it just doesn't seem to work out. The times I do FEEL and enjoy myself are when I watch a movie or read a book....I can then live through the character on the screen or in the pages. Interestingly, I also experience intense emotions in my dreams sometimes. Certain feelings I haven't had for so long, like surfing without feeling tranquilized, or being with loved ones without feeling tranquilized....these things I experience in my dreams.
Whatever happens I am determined to not ever let it beat me or keep my spirit down. The only way a person grows and develops is through suffering...and I really believe that all human beings who have ever achieved anything worth while went through a lot in their personal lives. The greatest human beings in history have often suffered the most.
I've been spending time with family as well as friends. My grandma just had her 91st birthday and our small family on my dad's side....my dad, his wife Janice, my aunt Mandy, and I were there in Ohio from aug 4th to 9th and had a good time with her.
As far as work goes I am doing well and anticipate a good year for tutoring. I plan to tutor about 20 hours per week but will charge a lot as I've really honed my ability to explain math well to just about anyone. Many of my pupils' parents kept me over the summer and I havea feeling most will continue with me during the school year.
Oct 16, 2007
The last year has gone beyond all of my expectations with regards to my tutoring business. By the last entry I was booked up and had a couple of other tutors I was getting clients (and commissions) from. IN the 06/07 school year I only tutored about 15 hours per week personally and devoted the rest of my time to learning about the marketing aspect of in home tutoring. Luckily for me the South Bay area had a high demand for in home tutoring and a low supply of good tutors. Actually there were plenty of good tutors but they lacked the marketing skills to connect with the people who needed them. I found my niche in just such an atmosphere and by March of 2007 had tripled my income from the previous year and was able to pay off debt to both my father and to the credit card company...each of whom I owed about $4,500 a year earlier. The summer brought a drought in business as usual but the new school year is upon us and this year is looking better than ever so far.
I was laid off from Marymount this fall. I initially was depressed about it for a couple of days....but after calculating the increase in income I would garner from focusing that extra time and energy on my tutoring business I'm guessing that it really was a blessing in disguise. I currently have several tutors I get clients for, and who in turn give pay me a commission for anyone I refer to them. At this point I'm making nearly the same amount with the commissions as I am with my own tutoring, and I expect this will surpass my income from personal tutoring within a month or so.
The marketing aspect is something I really enjoy. There is a lot of competition...many other In-Home tutoring companies are in the South Bay, all of us vying for clients out there who need tutoring assistance for their kids. Aside from tutoring math I feel it's something I have a knack for, and if my fibro symptoms don't get too awful it is something I see myself doing for the forseeeable future.
My fibromyalgia symptoms lately have been somewhat similar to the entry I made about a year ago. The worst symptom that continues to plague me (as it has since around summer of 2000) is the depression/anxiety. It's interesting because people who know me can't fathom that I would be dealing with that since I am upbeat and strong willed. What they can't see is that I don't ENJOY things nearly as much as I should. It's a very frustrating symtom and is especially hard to objectively talk about or even put into words at all. Whether it is.... spendng time with family and friends, or sitting down to watch a movie, watching a sunset, going out, being on a date, it doesn't seem to be a severe case of depression by any means, I'd say it is somewhere between mild and moderate. Decisions are difficult for me to make.....I get anxiety about things I really shouldn't, I feel excessive guilt when I shouldn't.
It is often hard to sit still and focus my brain. There seems to be a dark cloud forcing its way into my consciousness that is stubborn and won't go away. I honestly don't know how much of it is from the fatigue, or from brain chemical issues caused by the fibro & poor stage 3 and 4 sleep, or also by the 3 medications I currently take. I remember when I was 23 it was as if a switch flipped and my brain was different. It was when I was making a radical change in my medications. If you read all the journal entries I have from 2001 you can see it described in various ways. Unfortunately one of the symptoms of fibromyalgia is being extra sensitive to medications. For the one class of medications that might lift my spirits...the SSRI's, or slective seratonin re-uptake inhibitors, I am overly sensitive to all of them and cannot take the doses necessary to make a real difference.
I continue to try different things though and maintain my immutable sense of humor, and always am appreicative for what i have. If I get especially in a bad mood I think of people who have it worse than I do. I also look at the possibility of tomorrow. Each new day bings with it the promise of a new treatment, alternative or allopathic, which may gte me partially or completely better.
I think a big reason for the depression is the fatigue. My body is physically and mentally not doing well, and it seems natural the brain would take a hit as well. I often forget how "wasted" I feel until I do something like too much exercise, or swim in the ocean. The inevitable feeling of exhaustion that follows brings home how bad off my body is. it can be deceiving to look in the mirror each time I wash my hands and look at the body of an athletic 31 year old with good muscle tone and a very healthy look....it's difficult to remember that physcially and mentally I'm going through a lot at the moment.
Other symptoms are basically the same as last year....my jaw has been more stiff than normal; especially if I talk too much. Not a good thing to have when you tutor for a living and spend lots of time on the phone matching up clients with tutors. All of my joints and muscles remain stiff to a certain extent....I can exercise and have a habit of walking 1-2 miles per day, but if I overdo the exercise I will have increased symptoms for the next few days. Mercifully I don't "crash", that is end up in bed for a day or two, as do most other people with fibromyalgia or CFS who do too much exercise. The 3 meds I'm currently on are methadone (~7mg/day) which is a super low dose but highly effective for numerous symptoms, klonopin 1.75mg/day, and zoloft at 50mg/day. The zoloft is marketed for depression....for me it helps more with my other symptoms, though it does help with depression as well.
The medications don't help matters mentally. Well in some ways they do. They allow me to run a business and take care of myself financially, they also give my MUCH more energy to have a social life. What I don't like about them is that I feel....well...medicated. For me 3 medications is 3 too many. Without the meds I would be in a much worse state and really unable to have much of a social life and really unable to run a business.