Thanks to all of you who have continued to express their support for me. I am extremely grateful for all of you.
It's been a pretty bad week. I'm officially starting my 4th week here tomorrow and usually that means that things start getting better more often rather than feeling worse. But as most things go for me medically, that is not what is happening.
A week ago yesterday was my fender bender. While things are progressing very well in terms of getting my car fixed, things are not progressing as well as getting my FM fixed. Last Sunday my doctor saw me for the first time after the accident and although we were not even driving in my car (meaning we probably were hit by the other driver going under 5 mph) she said the damage was noticeable to my neck. She said it was a definite set back and that the only positive spin on it was that we are constantly moving the scar tissue around so we won't let any new scar tissue develop and clog up that area.
Monday - Wednesday were pretty normal except for the fact that most of the new progress I had made during my 2nd week was gone. Some due to the accident and others due to the fact that I had to go back full force on all of my meds. All of my treatments this past week were basically a holding pattern - meaning that she kept the scar tissue fluid but that due to severe inflammation we could not get the scar tissue to move out of the TMJ area.
Due to some construction at the clinic we had a day off on Thursday and I was not hurting as much as I had earlier in the week but I was super nauseated. I thought we had gotten past that stage but no, we did not. Friday was a very hard day for me physically and mentally. I went to clinic and asked my doctor 2 very important questions. Question #1 was 'Do you think I will fully recover?' and she took several minutes to formulate her response which was 'I don't know if you will ever reach 100%. Your case is so complicated and you have FM severely. You are a very sick lady'. I then asked question #2 which was 'How long do you think I will need to be here in order to get me into some semblance of normal life?' and again words were chosen carefully. (One aside - the typical treatment time is 8 weeks). She said 'I know you will need to be here at least 10 weeks, especially since you had an accident and lost a week's treatment but I have to be honest with you that you might very well stay here for 12 to 16 weeks'. 12 to 16 weeks?????
Does that ring any alarm bells for anyone else than just me? I handled the first question okay because my entire life I've never been 100%. If I could be even 80% better I'd be happy but I'd be lying if I said I really did hope that I could attain 100%. My doctor did say she could be entirely wrong and things might really start changing around weeks 5-7 but she was trying her best to give me the most honest answer.
12 weeks would get me through September 9th and to me that seems like a very, very long time to be here. . but 16 weeks? That brings me up to the 2nd week of October. OCTOBER?? I thought I'd be home before winter/fall set in. Of course I will do whatever it takes to make this therapy work for me but it was a blow. Why? Well, for many reasons:
-the sheer fact of being away from home for 4 months and only seeing J. and my mom once during this time (not to mention my babies at home who by that time will probably forget who I am)
-winter here comes early, even as early as Labor Day. Practical reasons for this exist such as my car will not drive in the snow and trying to drive a motor home in the winter across the west-southwest region could be very dangerous. Less practical reasons are that I hate winter, I suffer in a huge way from SAD and I do not want to have to greet cold weather earlier than I have to and at home I'd be able to hopefully have an Indian summer up to late October.
-financially this is going to cost my parents a fortune. It's $7000 for the first 8 weeks (not including the massage phase which I have not started) so that's another $7000+ if I do stay here through 16 weeks. Let's also add to that the rent we pay to park our motor home which is $675 per month in the off season (now). I don't have another $7000 and I don't even want to know where my parents got the first $10000 (they gave me a lump sum to pay for the treatments + massages). I feel so bad already at how much I've burdened them and to know that it might go even longer makes me feel even worse than when I was a sick person who was non-functional at home.
I also feel guilty that I may not have the same positive results that 99% of the patients have. I am very scared now that the amount of recovery I hopefully will gain may not be enough. It's kinda like when I had RK surgery on my eyes. It's the old school method before Lasik. My first surgery took me from 20/700 to 20/100 and the doctors were so happy with that. . well, I wasn't because after a certain point, blind is blind. I had to wait 2 months before I had my 2nd surgery and I was totally incapacitated at 20/100. So in terms of FM, if I'm not up to even 65-70% I'm not sure it's worth pursuing. But what other options do I have anyway??
I know I cannot predict the outcome but I am not exaggerating when I say that anytime something medical comes up for me it never works out the way it's supposed to. If I had a dime for all the times I've heard 'you just can't catch a break' then I'd have more than enough $ to pay for this.
Saturday was our scheduled day off and I spent it sleeping almost the whole day. I was depressed by the information I had received and was also just totally fatigued. I've been not taking my pain meds to ward off the pain before it starts -- instead I've been waiting to see if I need it at all. As you know, 2 weeks ago I was cutting down a lot of the pain meds easily. Well, Friday night I woke up with horrid leg cramps and took Percocet but it was already in full swing. Even more disturbing is that I took a Percocet on Saturday night before I went to bed and 2 hours later I was in extreme pain from my trunk down. Percocet lasts a minimum of 6 hours and is the strongest med I have for pain and for it to only last 2 hours scared me to death. If this whole venture doesn't work then I'm really screwed as I'm building up a tolerance to my current pain meds.
My dad was so kind and rubbed my legs until I fell back asleep. I got up today and went to my first treatment at clinic today feeling like total shit. My legs/trunk area were on fire, my body felt like lead, and my stomach was upset. After my first treatment my doctor told me she wants me to start more intake of protein as it can help w/ the fatigue and pain. She wants me to have 2 eggs in the AM + some type of sausage (I'll be going w/ the tofu sausage) and then get an additional 15 grams later in the day. So I went between treatments and had some eggs at a local diner.
I felt a bit better after that but came home, took a shower (long overdue) and went to bed until 6 PM. I woke up feeling that I was going to lose my lunch which I did in fact do (I hope the protein stayed). So now I am sitting on the couch and am eating crackers and ginger ale, both of which I am not supposed to have.
So what else has reverted? The constipation, the nausea, severe fatigue, and my mental state. My doctor told me today that she believes in 3 pieces of treatment that need to be worked on in order to be well. Mind, body, and spirit. She said I already have the strong spirit and that it doesn't need any work but that my mind (let the jokes begin, I know I am a nut case) and body need a lot. For the mind part this means she wants me to join the support group who meet on Tuesdays with the staff psychiatrist. Now if you know me, you know how low I value a psychiatrist. I personally do not want to sit with a whole bunch of post-menopausal women and discuss my problems of the mind. . so I'm unsure as what I want to do. I clearly have all the signs of someone who has been chronically ill, which are being afraid to get well, hoarding time to rest because I have been so starved of it in the past (which was the scenario when I was working and unable to let my very sick body rest), and finally how to immerse myself back into the land of the living and figure out what type of schedule that will work for me.
Other news? J. and I got bad news that his grandmother was diagnosed with Stage 4 lung cancer and has only a few months to live. I've been so sick over the past few years that I haven't seen her since the summer of 2005 and now I'm worried I won't see her again. I will feel horrible if I can't see her but flying across country (or at all) is not allowed and so inevitably I think J. will be the only one attending her funeral. I feel really bad about this as she has always been so kind to us and I'm not sure my family there understands what is going on.
Good news? There is so much support from all of you. I started taping up all the cards and notes I get and I have my entire bedroom almost filled up. This past week a friend of J's from college wrote me the nicest and most sincere letter I've ever read. K. is such a beautiful soul and it has always been clear to me why her husband, D., is crazy about her. She made a solid attempt (and was right on) to understand what I've been writing about in my blogs. As you know, I always write about my mantras and she gave me 2 that she thought would work for me. You have no idea how much this means to me -- that her and D. follow my blogs/treatment and have crazy-busy lives and *still* found the time to write me that beautiful letter -- means the world to me. The mantra I liked best was "I will not let fear or pain interfere with my healing" (I'm paraphrasing). . I got a piece of paper and wrote the mantra down word for word and taped it over my bed so that when I wake up, it's the first thing I see. So, dear K. , thank you so much. . . it meant so much to me that you wrote me.
Tomorrow starts week #4 (but really week #3 in terms of progress). . and I actually need to ask a favor of all of you. I believe that for me to get well will require more than just the physical and mental work I do -- I believe I need to have some help from the Divine. So, if you'd pray for me to start healing and to get to 100%, I'd appreciate it. It doesn't matter what religion you are, if you'd just keep on praying for that I will be forever indebted.
l_l
Sunday, June 29, 2008
Monday, June 23, 2008
Blog #10--On A Short Hiatus
Hi everyone. Thanks for the continued outpouring of support. I've never appreciated how loved I am and I will try to remember that when I'm having a bad time.
Saturday I got in a car accident. Probably the worst thing that could happen to a person in my position. Thank the Divine we were not driving. We were in line behind a car in front of us to turn out of a parking lot. For some reason the driver in front started backing up and didn't check to see if anyone was behind her. I hit the horn but was not able to back up fast enough.
The first thought was 'crap, my car' and then I felt my neck. It felt like someone took a zipper and pulled it from my lower back all the way up to the back of my ear. It was like a zipper on fire. The lady driving was nice but her husband was a jackass and drunk as a skunk. He didn't want to wait for a police officer but she did stay. They hit me squarely where the front license place is and it made a crack on the top side of the bumper in the shape of a smile.
I'm not worried about that part although it was very stressful (remember our mantra 'no stress') but know it will get fixed. But I was very upset about my neck. My doctor examined me today and told me it's about a good week setback. She said it's so full of inflammation now that the scar tissue won't keep moving out until the inflammation stops. It's frustrating to me because I've only been here 2 weeks and now I've lost one?
Anyway, it's starting to feel better but I was told specifically to take it *extremely* easy and so I won't be answering emails or calls much for the good part of the week. However, I love hearing from all of you that if you don't mind waiting for my response then please send away.
Thanks for your support. I think I may be being tested on a higher level and I am going to try very hard to not flunk the exam.
l_l
Saturday I got in a car accident. Probably the worst thing that could happen to a person in my position. Thank the Divine we were not driving. We were in line behind a car in front of us to turn out of a parking lot. For some reason the driver in front started backing up and didn't check to see if anyone was behind her. I hit the horn but was not able to back up fast enough.
The first thought was 'crap, my car' and then I felt my neck. It felt like someone took a zipper and pulled it from my lower back all the way up to the back of my ear. It was like a zipper on fire. The lady driving was nice but her husband was a jackass and drunk as a skunk. He didn't want to wait for a police officer but she did stay. They hit me squarely where the front license place is and it made a crack on the top side of the bumper in the shape of a smile.
I'm not worried about that part although it was very stressful (remember our mantra 'no stress') but know it will get fixed. But I was very upset about my neck. My doctor examined me today and told me it's about a good week setback. She said it's so full of inflammation now that the scar tissue won't keep moving out until the inflammation stops. It's frustrating to me because I've only been here 2 weeks and now I've lost one?
Anyway, it's starting to feel better but I was told specifically to take it *extremely* easy and so I won't be answering emails or calls much for the good part of the week. However, I love hearing from all of you that if you don't mind waiting for my response then please send away.
Thanks for your support. I think I may be being tested on a higher level and I am going to try very hard to not flunk the exam.
l_l
Thursday, June 19, 2008
Blog #9--Adjustments, Adjustments, & More Adjustments
Before I start the update I need to say something far more important than my small world of FM.
This past week my close friend (since age 5) lost her step-father after a long battle with cancer. Her father was a kind man and supported all of us especially during our teen years. I remember his wedding to my friend's mom like it was yesterday and a trip to Disneyland that he took us on.
So I ask this, the next time you experience a moment of happiness, do me a favor and dedicate it to my friend's father, Ray. Ray, I know you are in a much better place and free from bodily pain. Don't worry about your family as we will take care of them and all of us will be happy to see you when it is our time to pass. All my happy moments today are for you, Ray. Be in peace.
---------------------------------------------------------------
I know I haven't written in about a week and I apologize for that. It's been a week filled with so many adjustments that I cannot possibly list all of them here. . so this probably will be a long post.
First, I need to answer the basic question I keep getting asked 'what do they do to you at each treatment?' and the answer is it's a modified version of chiropractic adjustments and the key is not only in the modified adjustments but the frequency. We get 14 adjustments a week and for the duration of somewhere between 3-5 months. That is how long it takes for your body to 'reset' itself into the correct spinal position. Then once it's re-set you must go into a basic hibernation stage for up to a year to not knock it out of alignment. . super important. . . so I hopefully will come back feeling better but will be actually more gimped up than I was before I left (hopefully my demeanor will be improved--ha ha). .the rule of thumb is no work like sweeping, mopping, or heavy lifting. Big rule of thumb - your elbows cannot be raised over you shoulders for a *minimum* of a year. . that is far more disabling than you realize but I'm happy to comply.
Anyway, this week has been more than just physical, chiropractic adjustments. It has been one of an adjustment of attitude (hopefully for the better) and also an adjustment to my surroundings.
I was very, very depressed over the weekend and reached my breaking point on Sunday afternoon. I had a panic attack and cried for many hours -- all of which severely set back my progress. Monday morning I woke up extremely tired and begged my dad to let me skip the morning treatments. That was an academic point as soon I tried to feed my diabetic cat, Matt, and could not find him. We live in a motor home with about 200 sq. feet and we pulled this place apart. I was hysterical. I had opened the door during the night to put out some trash but I was sure I never saw him run out. Matt is a disabled cat who, aside from diabetes, is very cross-eyed and cannot see well. I knew if he had gotten out, we'd never find him. To make it worse, as I went outside in my PJs, I saw coyote tracks up to my window.
My friend from the clinic lives 3 doors down and she came out to walk to the clinic and saw me in extreme distress. She was holding me up and walking me back to my motor home (I was in a full blown panic attack) and my dad walked out just then and said he found him. That little stinker had gotten inside of the steering column of the motor home and it took us an hour to get him out. Needless to say I missed the AM treatments. However, I did get 2 in the PM and went home very worn out.
Tuesday AM I awoke and found myself extremely dizzy. If I even moved my eyes to one side or the other I would feel like I needed to throw up. I managed to get through my 2 treatments and came home and slept for a while. When I woke up the dizziness was extremely bad and even with my eyes closed I was now getting physically ill just shifting my eyes under the lids. My dad wasn't home so I called the clinic just to see if I could talk to a patient coordinator. I got a hold of Susie, who is the best office admin. I have ever met. She immediately went to get Dr. Whitcomb (the big wig, not my daily doctor). I figured he'd talk to me a bit over the phone but instead he asked for directions to my house and he & Susie were here in 10 minutes. He first gave me a lot of care by letting me sob in his arms for a bit (I am an emotional mess here so give me a break) & then he gave me an adjustment and the dizziness was gone, just like that. I was super sore but felt so relieved and also was just at a loss for how much these people really care about us (their patients). I have dealt with a lot of doctors in my life and I never have had anyone respond to me this way. It sealed the deal and I decided I was going to stick this out. Prior to that, I had really thought I would not stay the duration.
The rest of the week's treatments were pretty standard. I found out a lot of information and also got to know a few of the patients a lot better. I've started to sleep better and have actually slept through a few nights without waking up to take pain meds. I've not taken several doses of my Lortab but don't get too excited, it's still here and as I mentioned it's a roller coaster ride.
Some other progress that is notable. . I have walked over 25 miles during the 2 weeks I've been here. Just taking the short 1.5 miles round trip to the clinic 3 times a day it adds up. I've lost 4 pounds this week and according to my doctor my skin looks less gaunt and has more color (i.e. - proper blood circulation). Now to the sort of sensitive subjects that I promised to be open about. . I have had 5 normal bowel movements since I started treatment. In case you didn't know my prior score, I had not had a normal bowel movement w/o an enema for the past 4 years. So this is a big deal. After Tuesday I had basically cleaned myself out from the mouth and from the other end due to the dizziness. So I tried a little test and stopped taking all my anti-constipation meds (Colace, flaxseed, etc). Today I had a normal bowel movement and I literally shit my pants due to happiness (ok, not really but it sounded funny). For anyone who thinks being constipated isn't a big deal, you try walking around with all the crap in your system and can't get it out. Ain't fun folks.
Oh yeah, and probably a notable thing here -- for 6 days in a row I have gotten up at 7 AM, taken a shower, gotten dressed/ready/, and walked to clinic. Prior to this, I have not gotten out of bed before noon to 1 PM for the past 2 years w/ only a few necessary exceptions so for me to actually be handling the clinic schedule alone is nothing short of a miracle.
Now some social progress. As you all are aware, I hated it here as of last week. Well, I have finally started adjusting. First was a random circumstance that turned out to be really cool. On Thursday I was home from treatment by noon and quite tired. The night before we got some new neighbors. . an awesome couple from the Netherlands. They had flown into Vegas and had rented an RV to drive up to San Francisco and then back down on Highway 1. They had fiasco after fiasco up until leaving Las Vegas. They got to South Lake Tahoe (SLT) and figured they'd rent bicycles to get around for the day or 2 they were staying here. Well, SLT being so cool as it is, the rentals were *ridiculous*. . $9 an hour and no rentals over night. They then were stuck at an RV park and had already paid to stay the allotted nights. So I told them to take my car and go and have fun. They thought I was nuts but I believe in paying it forward as much as possible.
I finally convinced them to take the car and told them to just come home whenever and leave the keys under the seat & lock the door. Ok, I will admit, I figured I had their RV as collateral. . but I knew they were cool. Last night they came knocking on my door and gave me a beautiful terra cotta pot filled with flowers -- the exact ones I miss so much from home. I also had mentioned in passing that I loved hummingbirds and they had no idea what that meant but they found a beautiful, green blown glass hummingbird feeder and bought it for me. They stayed over and we talked until 12:30 AM. I was tired but went to bed knowing I had met 2 people who will be friends for life. It was a good feeling.
Today I made 2 connections that surprised me. First, I mentioned a young man at the clinic that I called 'Mark'. Anyway, today Mark and I had the most personal and unbiased talk about religion. He comes from a Mormon perspective, as I come from a Wiccan perspective. We not only met in the middle but I realized that I had a lot of perceptions about the Mormon religion that were just not true at all. I'm not talking about crazy off-shoot sects with polygamy, I'm talking about things like thinking that Mormons thought that their religion was the only religion and if you weren't Mormon you went to hell. I was *totally* wrong on all of that and I was actually quite impressed with many of the basic tenets of their belief system. I even asked for a copy of them because it fascinates me. I gave Mark a lift home so I could meet his wife before she left back to home but she was busy with their new baby so I said I'd meet her another time. He leaves in 2 weeks and I really think I will cry when he leaves as I feel like I met a really good person who cares not just about humanity but also about me. We also have the bond of FM and although we hate the reason, there is some what of a silver lining. In my upcoming year+ of hibernation maybe I'll take a class about ancient and modern day religions. . seems to really interest me.
The last social adjustment I had was that of an 11 year old girl, whom I'll call 'Kristen'. She is a granddaughter of a lady who attends the clinic and she is staying with them for the summer. To make a long story short, she is from a very dysfunctional family and believes her dad wants nothing to do w/ her. After hearing her full story I realize that her mother took him to court to release him of his parental rights. She has a lot of problems such as ADD and usually I do not bond with children. However, this young lady just got to me. I was super tired after dinner and she was outside talking with my dad and some other neighbors. She ended up coming inside and sitting on my bed talking to me for 2 hours and sharing her secrets with me (I had to even shut the door). She is a beautiful young lady who has no self esteem and from what I can tell is not getting an validation from home. I feel compelled to be her friend, or some sort of mentor for her and we decided to write letters via snail mail for the next few years. I promised her that when she was of legal age I would help her find her dad. I know I just met her but I swear that I will keep my promise to her come hell or high water. She isn't some charity case, but rather, a diamond in the rough. I really saw a connection with her when we interacted with my cats. I told her she needed to be very quiet in order for my cats (Mojo and Matt) to let her pet them. She knows she has ADD and actually has learned how to calm herself to not get overly excited or start talking non-stop (she thought that doing this self-calming was wrong and stupid and I had to explain to her that most adults are unable to achieve that kind of hold over their emotional system--see what I mean about lack of self confidence and no validation??). I honestly did not think the cats would respond but she really calmed herself down and they both allowed her to pet them. . Matt even purred for her!! At that point she said words I have felt were the basis of my entire belief system which were, 'I think animals are pure souls and not messed up like humans' . Admittedly, I would have dropped the last part but she gets it and I can see that she has complete potential to make sure her life doesn't run off track (given her family situation I can see why that would be of concern). I felt a very strong bond with her and have encouraged her to come by anytime (something I won't even do with my best friends at home). . and I am not only charmed by this young soul but am also humbled. She has had a hell of a time and not just from what she told me, I'd heard some of this from her grandparents. I see this personality and want to have self confidence brewing inside her and I hope to be a major player in seeing that young lady emerge. She asked if she could call me "Mo Mo" -- not sure why but it was really endearing to me.
I guess with all the driving around this week I have finally found the pretty spots of SLT and did finally break down and take some photos of my surroundings and sent them to my close friends.
So, with that being said, it's been a week of adjustments of all kinds and who knows what next week will bring.
l_l
This past week my close friend (since age 5) lost her step-father after a long battle with cancer. Her father was a kind man and supported all of us especially during our teen years. I remember his wedding to my friend's mom like it was yesterday and a trip to Disneyland that he took us on.
So I ask this, the next time you experience a moment of happiness, do me a favor and dedicate it to my friend's father, Ray. Ray, I know you are in a much better place and free from bodily pain. Don't worry about your family as we will take care of them and all of us will be happy to see you when it is our time to pass. All my happy moments today are for you, Ray. Be in peace.
---------------------------------------------------------------
I know I haven't written in about a week and I apologize for that. It's been a week filled with so many adjustments that I cannot possibly list all of them here. . so this probably will be a long post.
First, I need to answer the basic question I keep getting asked 'what do they do to you at each treatment?' and the answer is it's a modified version of chiropractic adjustments and the key is not only in the modified adjustments but the frequency. We get 14 adjustments a week and for the duration of somewhere between 3-5 months. That is how long it takes for your body to 'reset' itself into the correct spinal position. Then once it's re-set you must go into a basic hibernation stage for up to a year to not knock it out of alignment. . super important. . . so I hopefully will come back feeling better but will be actually more gimped up than I was before I left (hopefully my demeanor will be improved--ha ha). .the rule of thumb is no work like sweeping, mopping, or heavy lifting. Big rule of thumb - your elbows cannot be raised over you shoulders for a *minimum* of a year. . that is far more disabling than you realize but I'm happy to comply.
Anyway, this week has been more than just physical, chiropractic adjustments. It has been one of an adjustment of attitude (hopefully for the better) and also an adjustment to my surroundings.
I was very, very depressed over the weekend and reached my breaking point on Sunday afternoon. I had a panic attack and cried for many hours -- all of which severely set back my progress. Monday morning I woke up extremely tired and begged my dad to let me skip the morning treatments. That was an academic point as soon I tried to feed my diabetic cat, Matt, and could not find him. We live in a motor home with about 200 sq. feet and we pulled this place apart. I was hysterical. I had opened the door during the night to put out some trash but I was sure I never saw him run out. Matt is a disabled cat who, aside from diabetes, is very cross-eyed and cannot see well. I knew if he had gotten out, we'd never find him. To make it worse, as I went outside in my PJs, I saw coyote tracks up to my window.
My friend from the clinic lives 3 doors down and she came out to walk to the clinic and saw me in extreme distress. She was holding me up and walking me back to my motor home (I was in a full blown panic attack) and my dad walked out just then and said he found him. That little stinker had gotten inside of the steering column of the motor home and it took us an hour to get him out. Needless to say I missed the AM treatments. However, I did get 2 in the PM and went home very worn out.
Tuesday AM I awoke and found myself extremely dizzy. If I even moved my eyes to one side or the other I would feel like I needed to throw up. I managed to get through my 2 treatments and came home and slept for a while. When I woke up the dizziness was extremely bad and even with my eyes closed I was now getting physically ill just shifting my eyes under the lids. My dad wasn't home so I called the clinic just to see if I could talk to a patient coordinator. I got a hold of Susie, who is the best office admin. I have ever met. She immediately went to get Dr. Whitcomb (the big wig, not my daily doctor). I figured he'd talk to me a bit over the phone but instead he asked for directions to my house and he & Susie were here in 10 minutes. He first gave me a lot of care by letting me sob in his arms for a bit (I am an emotional mess here so give me a break) & then he gave me an adjustment and the dizziness was gone, just like that. I was super sore but felt so relieved and also was just at a loss for how much these people really care about us (their patients). I have dealt with a lot of doctors in my life and I never have had anyone respond to me this way. It sealed the deal and I decided I was going to stick this out. Prior to that, I had really thought I would not stay the duration.
The rest of the week's treatments were pretty standard. I found out a lot of information and also got to know a few of the patients a lot better. I've started to sleep better and have actually slept through a few nights without waking up to take pain meds. I've not taken several doses of my Lortab but don't get too excited, it's still here and as I mentioned it's a roller coaster ride.
Some other progress that is notable. . I have walked over 25 miles during the 2 weeks I've been here. Just taking the short 1.5 miles round trip to the clinic 3 times a day it adds up. I've lost 4 pounds this week and according to my doctor my skin looks less gaunt and has more color (i.e. - proper blood circulation). Now to the sort of sensitive subjects that I promised to be open about. . I have had 5 normal bowel movements since I started treatment. In case you didn't know my prior score, I had not had a normal bowel movement w/o an enema for the past 4 years. So this is a big deal. After Tuesday I had basically cleaned myself out from the mouth and from the other end due to the dizziness. So I tried a little test and stopped taking all my anti-constipation meds (Colace, flaxseed, etc). Today I had a normal bowel movement and I literally shit my pants due to happiness (ok, not really but it sounded funny). For anyone who thinks being constipated isn't a big deal, you try walking around with all the crap in your system and can't get it out. Ain't fun folks.
Oh yeah, and probably a notable thing here -- for 6 days in a row I have gotten up at 7 AM, taken a shower, gotten dressed/ready/, and walked to clinic. Prior to this, I have not gotten out of bed before noon to 1 PM for the past 2 years w/ only a few necessary exceptions so for me to actually be handling the clinic schedule alone is nothing short of a miracle.
Now some social progress. As you all are aware, I hated it here as of last week. Well, I have finally started adjusting. First was a random circumstance that turned out to be really cool. On Thursday I was home from treatment by noon and quite tired. The night before we got some new neighbors. . an awesome couple from the Netherlands. They had flown into Vegas and had rented an RV to drive up to San Francisco and then back down on Highway 1. They had fiasco after fiasco up until leaving Las Vegas. They got to South Lake Tahoe (SLT) and figured they'd rent bicycles to get around for the day or 2 they were staying here. Well, SLT being so cool as it is, the rentals were *ridiculous*. . $9 an hour and no rentals over night. They then were stuck at an RV park and had already paid to stay the allotted nights. So I told them to take my car and go and have fun. They thought I was nuts but I believe in paying it forward as much as possible.
I finally convinced them to take the car and told them to just come home whenever and leave the keys under the seat & lock the door. Ok, I will admit, I figured I had their RV as collateral. . but I knew they were cool. Last night they came knocking on my door and gave me a beautiful terra cotta pot filled with flowers -- the exact ones I miss so much from home. I also had mentioned in passing that I loved hummingbirds and they had no idea what that meant but they found a beautiful, green blown glass hummingbird feeder and bought it for me. They stayed over and we talked until 12:30 AM. I was tired but went to bed knowing I had met 2 people who will be friends for life. It was a good feeling.
Today I made 2 connections that surprised me. First, I mentioned a young man at the clinic that I called 'Mark'. Anyway, today Mark and I had the most personal and unbiased talk about religion. He comes from a Mormon perspective, as I come from a Wiccan perspective. We not only met in the middle but I realized that I had a lot of perceptions about the Mormon religion that were just not true at all. I'm not talking about crazy off-shoot sects with polygamy, I'm talking about things like thinking that Mormons thought that their religion was the only religion and if you weren't Mormon you went to hell. I was *totally* wrong on all of that and I was actually quite impressed with many of the basic tenets of their belief system. I even asked for a copy of them because it fascinates me. I gave Mark a lift home so I could meet his wife before she left back to home but she was busy with their new baby so I said I'd meet her another time. He leaves in 2 weeks and I really think I will cry when he leaves as I feel like I met a really good person who cares not just about humanity but also about me. We also have the bond of FM and although we hate the reason, there is some what of a silver lining. In my upcoming year+ of hibernation maybe I'll take a class about ancient and modern day religions. . seems to really interest me.
The last social adjustment I had was that of an 11 year old girl, whom I'll call 'Kristen'. She is a granddaughter of a lady who attends the clinic and she is staying with them for the summer. To make a long story short, she is from a very dysfunctional family and believes her dad wants nothing to do w/ her. After hearing her full story I realize that her mother took him to court to release him of his parental rights. She has a lot of problems such as ADD and usually I do not bond with children. However, this young lady just got to me. I was super tired after dinner and she was outside talking with my dad and some other neighbors. She ended up coming inside and sitting on my bed talking to me for 2 hours and sharing her secrets with me (I had to even shut the door). She is a beautiful young lady who has no self esteem and from what I can tell is not getting an validation from home. I feel compelled to be her friend, or some sort of mentor for her and we decided to write letters via snail mail for the next few years. I promised her that when she was of legal age I would help her find her dad. I know I just met her but I swear that I will keep my promise to her come hell or high water. She isn't some charity case, but rather, a diamond in the rough. I really saw a connection with her when we interacted with my cats. I told her she needed to be very quiet in order for my cats (Mojo and Matt) to let her pet them. She knows she has ADD and actually has learned how to calm herself to not get overly excited or start talking non-stop (she thought that doing this self-calming was wrong and stupid and I had to explain to her that most adults are unable to achieve that kind of hold over their emotional system--see what I mean about lack of self confidence and no validation??). I honestly did not think the cats would respond but she really calmed herself down and they both allowed her to pet them. . Matt even purred for her!! At that point she said words I have felt were the basis of my entire belief system which were, 'I think animals are pure souls and not messed up like humans' . Admittedly, I would have dropped the last part but she gets it and I can see that she has complete potential to make sure her life doesn't run off track (given her family situation I can see why that would be of concern). I felt a very strong bond with her and have encouraged her to come by anytime (something I won't even do with my best friends at home). . and I am not only charmed by this young soul but am also humbled. She has had a hell of a time and not just from what she told me, I'd heard some of this from her grandparents. I see this personality and want to have self confidence brewing inside her and I hope to be a major player in seeing that young lady emerge. She asked if she could call me "Mo Mo" -- not sure why but it was really endearing to me.
I guess with all the driving around this week I have finally found the pretty spots of SLT and did finally break down and take some photos of my surroundings and sent them to my close friends.
So, with that being said, it's been a week of adjustments of all kinds and who knows what next week will bring.
l_l
Saturday, June 14, 2008
Blog #8--Untitled
(note: blog was written at 2:03 am but Internet services were down)
Today is one of those days where the depression takes over and I lay in bed all the time. I thought that being away from home might leave the depression there but no, it hasn't. Yesterday I had the IBD side of FM bothering me and was nauseous and throwing up a lot. I still had to go to 3 treatments and that sucked. My doctor said I did too much the day before (drove around the lake) and to rest more. The advice wasn't needed. I came home at 4 pm yesterday and slept until 12 pm today. I woke up feeling the blackness & shadows tainting everything.
I tried to watch TV but it was boring and the darkness kept intruding on my attention. This was my first day off and I am at the lowest point since I've been here.
I'm so lonely. I am home sick and I feel like I am missing the summer. It's so cold here. I feel regretful for all of the different things that have happened over the past 10 some years that lead me to this point. Regret that I cannot correct and connections I cannot make or re-make no matter how badly I want to.
Of course I cannot be feeling better after less than a week of treatment but I really cannot imagine being here through September. I feel hopeless and I don't want to be here. Actually, I don't want to be anywhere. I wish I could leave this place, this world. I would be free of my ailments, heartaches & suffering and my family would be free of the burden I've become.
As I've mentioned before, I tend to use music as my voice and so I'm going to post the following lyrics from an older Alternative group 'Toad the Wet Sprocket', the song is titled 'Fall Down'. Note--the only part of the lyrics I do not relate to is 'she even hates her friends', clearly I don't and actually love them dearly. Here we go:
'Fall Down' by Toad the Wet Sprocket:
She said I'm fine, I'm okay cover up your trembling hands
There's indecision when you know you ain't got nothing left
When the good times never stay
And the cheap thrills always seem to fade away
When will we fall
When will we fall down
Jump back, got to get out of here
Been too long this time
Jump back, got to get out of here
When will, when will we fall down
She hates her life, she hates her skin, she even hates her friends
Tries to hold on to all the reputations she can't mend
And there's some chance we could fail
But the last time someone was always there for bail
When will we fall
When will we fall down
Jump back, got to get out of here
Been too long this time
Jump back, got to get out of here
When will, when will we fall down
She said I'm fine, I'm okay cover up your trembling hands
There's indecision when you know you ain't got nothing left
For the last time conscience calls
For a good friend I was never there at all
When will we fall
When will we fall down
l_l
Thursday, June 12, 2008
Blog #7--No Pain, No Gain
Sorry the updates have been slow. A lot of it is due to treatment but mainly because our Internet connection is sketchy. I think South Lake Tahoe is gorgeous but I don't get the appeal. It's just like living in Los Alamos or the Jemez with a lake. The lake is usually 42 degrees year round so who's going to be in that water? It is stunning to see but I'd rather be looking at Diamond Head.
Tuesday was my first day of repeated treatments and they were *brutal*. Dr. W. doesn't do the daily adjustments and has 2 other doctors on staff. I was lucky to get the stunning Dr. Marcel. She is awesome and extremely nice. We hit it off immediately. We're the same age (has the same birthday as my J.) and both are married to younger men.
Tuesday she did the pressure points on the TMJ area of my jaw on both sides. There is a technical name for this part of your body but I don't remember it. It's the main intersection with the menenges and is very painful to treat. Then I got to adjustments of my neck, one on each side. I was sore after the treatments and she said it'd probably get worse before it got better. She is currently breaking up the scar tissue that is one of the things blocking the channel to the brain. By the time I had walked back home I was in *severe* pain. Remember the described "neck headaches" - well, this one was the worst one I have ever had in my life. I remained drugged up hourly and packed the area with ice. However, I am very restricted in movement of my neck and I am in a basic form of traction at all times. It was miserable and unfortunately not the last one I am going to have. She explained that until all the scar tissue is broken up and out, along w/ the inflammation is down; I will continue to have the bad headaches. There is a light at the end of the tunnel but you gotta buck up and take the pain. It seems alright to me now but when the next one comes on, I will feel like dying.
I have basically been in life bootcamp. I have not had a normal routine for well over a year and a half. Now I must be up at 7 AM every day and have to be dressed, look marginally okay, and then walk 1 mile to the clinic. So far I've been able to do this daily w/o much problem and this confuses me. . why can't I do that at home? Clearly there is a very compelling reason for me to get up and go each day but wasn't work also a compelling reason? I haven't had a day where I've said 'I just can't go today' and I'm wondering if my home environment has caused me to be more homebound than I needed to be. I guess it's possible that in the past 3 days I may be feeling better but from what I know of this disease, it does not come that easily.
I've met an entire spectrum of people. For privacy's sake, I am giving them different names. 'Mark' is a young man in his late 20's, with a wife and kiddo who works at a national Lab (not LANL). I feel horrible for him because people already do not believe this is a real disease but it's very unusual for men to get it (80% women) and so I think he had years of people giving him a hard time before getting properly diagnosed. Poor guy has to actually take his laptop and work at the clinic while he's there. He says he needs to go back home within 2 weeks and I do not see how he will be better by then. . . but what can you do? I have always felt grateful and extremely blessed to have J. and my parents support. . but now that I am here I can tell you that 90% of these people are here alone. They get their 3 treatments per day and then have a motel to go to and have to take care of everything themselves. There have been days where I could not do anything and thank goodness my dad is here but I feel for these people.
I met a young woman, I'll call her 'Laura' and she is 21 and very sick. The interesting part is that she is bi-polar and we take the same drug protocol. I have never met anyone else who takes Seroquel and so it was interesting to talk to her. Again, she is here all alone and in the early stages of treatment, as I am, and is relying on herself for everything. Most of these people have been bedridden at some point so this is not a trivial thing. Even trying to get lunch would be a huge deal.
The last patient of interest I'll call 'Nina'. 'Nina' came here weighing almost 300 pounds. She was on steroids (????? never heard of that for FM treatment) and has been here for several months. However, she is now a size 2 and back to life. She came in a wheelchair and now is back on track of being a tri-athlete. I would be skeptical about her weight loss and miraculous progress but she showed me her drivers license and I about fell over. The person in that photo had her face but was honestly 200 pounds heavier. She just started back on her athletic routine but lost her weight just due to treatment and getting off the meds.
I guess the other big thing is that I have to be so conscious of my neck area. It must be kept in line with your spine *at all times*. Not easy. . you have to sleep on a very flat pillow (I usually sleep w/ 3), you can't bend your neck back to even rinse your hair off in the shower, you can't lay down on the couch to read a book, you have to be sitting up all the time and have to maintain this vigilant posture for a year at minimum.
Some would say that the clinic is just being extreme in that regard but my last story about other patients is about a lady I'll call 'Claire'. Claire was successfully treated last year and on her way home she caught a flu bug on the airplane. She got so sick that she had to go to ER and along the way, the medics accidentally bumped her head inside of the ambulance. She felt her neck snap and bam! FM was back in full force. She's here for a shorter time now to get back into shape but it really makes it clear about how precarious this whole situation can be.
I haven't figured out what started my FM. I do believe there is a relationship between it and my Dermatomyositis. I also have had surgeries, have fallen down the basement stairs and hit my head, have had a car accident w/ a neck injury, and have fallen and hit my head really hard when snow boarding. I guess it's neither here nor there what started it but I believe that for the rest of my life I am going to be very careful about jarring movements to my head.
FM has been classified as a real disease by the CDC and is considered an auto-immune disease. . so technically you never get rid of it and it just goes dormant when you're in 'remission'. I hear people talk about flare ups and I know that we'll be sent home with the task of finding a local chiropractor that is willing to work with the doctors here when we have one. I am very curious as to how I will react to the winter. . as usually it makes me miserable.
Speaking of winter. . it's very important to move a motor home prior to bad weather and it starts to snow here by Labor Day. There is a very good chance I will be here through September so I am not sure how we'll handle that.
There is more that I want to say on the dynamics of the patients but I am tired and don't feel like rehashing it. I'll try and remember to update everyone the next time I write. In short, there are many patients here who are well into their 50's - 70's but tend to act like a 5 year old on the playground. It is so bad that it's almost funny but it's truly sad that these people are here and probably staying longer than they need to because they have nothing to go back to. I have felt like smacking one particular patient to the moon several times (and I've only been here since Monday) but have decided to just give her the rope and trust me, she's already hung herself.
I need to go to bed. I have a bad feeling tomorrow will be a hurting day due to my current neck pain in my right side but that's part of the deal in order to get well. I hope this is the real deal and that I can manage to change my lifestyle to maintain my health when (and if) I get it back.
I miss all of you and miss home. I really miss my pets and the summer. It's not nearly as warm of a summer up here.
l_l
Tuesday was my first day of repeated treatments and they were *brutal*. Dr. W. doesn't do the daily adjustments and has 2 other doctors on staff. I was lucky to get the stunning Dr. Marcel. She is awesome and extremely nice. We hit it off immediately. We're the same age (has the same birthday as my J.) and both are married to younger men.
Tuesday she did the pressure points on the TMJ area of my jaw on both sides. There is a technical name for this part of your body but I don't remember it. It's the main intersection with the menenges and is very painful to treat. Then I got to adjustments of my neck, one on each side. I was sore after the treatments and she said it'd probably get worse before it got better. She is currently breaking up the scar tissue that is one of the things blocking the channel to the brain. By the time I had walked back home I was in *severe* pain. Remember the described "neck headaches" - well, this one was the worst one I have ever had in my life. I remained drugged up hourly and packed the area with ice. However, I am very restricted in movement of my neck and I am in a basic form of traction at all times. It was miserable and unfortunately not the last one I am going to have. She explained that until all the scar tissue is broken up and out, along w/ the inflammation is down; I will continue to have the bad headaches. There is a light at the end of the tunnel but you gotta buck up and take the pain. It seems alright to me now but when the next one comes on, I will feel like dying.
I have basically been in life bootcamp. I have not had a normal routine for well over a year and a half. Now I must be up at 7 AM every day and have to be dressed, look marginally okay, and then walk 1 mile to the clinic. So far I've been able to do this daily w/o much problem and this confuses me. . why can't I do that at home? Clearly there is a very compelling reason for me to get up and go each day but wasn't work also a compelling reason? I haven't had a day where I've said 'I just can't go today' and I'm wondering if my home environment has caused me to be more homebound than I needed to be. I guess it's possible that in the past 3 days I may be feeling better but from what I know of this disease, it does not come that easily.
I've met an entire spectrum of people. For privacy's sake, I am giving them different names. 'Mark' is a young man in his late 20's, with a wife and kiddo who works at a national Lab (not LANL). I feel horrible for him because people already do not believe this is a real disease but it's very unusual for men to get it (80% women) and so I think he had years of people giving him a hard time before getting properly diagnosed. Poor guy has to actually take his laptop and work at the clinic while he's there. He says he needs to go back home within 2 weeks and I do not see how he will be better by then. . . but what can you do? I have always felt grateful and extremely blessed to have J. and my parents support. . but now that I am here I can tell you that 90% of these people are here alone. They get their 3 treatments per day and then have a motel to go to and have to take care of everything themselves. There have been days where I could not do anything and thank goodness my dad is here but I feel for these people.
I met a young woman, I'll call her 'Laura' and she is 21 and very sick. The interesting part is that she is bi-polar and we take the same drug protocol. I have never met anyone else who takes Seroquel and so it was interesting to talk to her. Again, she is here all alone and in the early stages of treatment, as I am, and is relying on herself for everything. Most of these people have been bedridden at some point so this is not a trivial thing. Even trying to get lunch would be a huge deal.
The last patient of interest I'll call 'Nina'. 'Nina' came here weighing almost 300 pounds. She was on steroids (????? never heard of that for FM treatment) and has been here for several months. However, she is now a size 2 and back to life. She came in a wheelchair and now is back on track of being a tri-athlete. I would be skeptical about her weight loss and miraculous progress but she showed me her drivers license and I about fell over. The person in that photo had her face but was honestly 200 pounds heavier. She just started back on her athletic routine but lost her weight just due to treatment and getting off the meds.
I guess the other big thing is that I have to be so conscious of my neck area. It must be kept in line with your spine *at all times*. Not easy. . you have to sleep on a very flat pillow (I usually sleep w/ 3), you can't bend your neck back to even rinse your hair off in the shower, you can't lay down on the couch to read a book, you have to be sitting up all the time and have to maintain this vigilant posture for a year at minimum.
Some would say that the clinic is just being extreme in that regard but my last story about other patients is about a lady I'll call 'Claire'. Claire was successfully treated last year and on her way home she caught a flu bug on the airplane. She got so sick that she had to go to ER and along the way, the medics accidentally bumped her head inside of the ambulance. She felt her neck snap and bam! FM was back in full force. She's here for a shorter time now to get back into shape but it really makes it clear about how precarious this whole situation can be.
I haven't figured out what started my FM. I do believe there is a relationship between it and my Dermatomyositis. I also have had surgeries, have fallen down the basement stairs and hit my head, have had a car accident w/ a neck injury, and have fallen and hit my head really hard when snow boarding. I guess it's neither here nor there what started it but I believe that for the rest of my life I am going to be very careful about jarring movements to my head.
FM has been classified as a real disease by the CDC and is considered an auto-immune disease. . so technically you never get rid of it and it just goes dormant when you're in 'remission'. I hear people talk about flare ups and I know that we'll be sent home with the task of finding a local chiropractor that is willing to work with the doctors here when we have one. I am very curious as to how I will react to the winter. . as usually it makes me miserable.
Speaking of winter. . it's very important to move a motor home prior to bad weather and it starts to snow here by Labor Day. There is a very good chance I will be here through September so I am not sure how we'll handle that.
There is more that I want to say on the dynamics of the patients but I am tired and don't feel like rehashing it. I'll try and remember to update everyone the next time I write. In short, there are many patients here who are well into their 50's - 70's but tend to act like a 5 year old on the playground. It is so bad that it's almost funny but it's truly sad that these people are here and probably staying longer than they need to because they have nothing to go back to. I have felt like smacking one particular patient to the moon several times (and I've only been here since Monday) but have decided to just give her the rope and trust me, she's already hung herself.
I need to go to bed. I have a bad feeling tomorrow will be a hurting day due to my current neck pain in my right side but that's part of the deal in order to get well. I hope this is the real deal and that I can manage to change my lifestyle to maintain my health when (and if) I get it back.
I miss all of you and miss home. I really miss my pets and the summer. It's not nearly as warm of a summer up here.
l_l
Monday, June 9, 2008
Blog #6--Today Is The First Day Of The Rest Of My Life
Wow, where to begin. Got to South Lake Tahoe yesterday and it's very much like home but with a lake. I heard coyotes talk to one another all night and my cats were jumpy all night long. I've had a stomach bug for the past few days, could be nerves but didn't sleep well at all last night.
Today was my evaluation with Dr. Whitcomb (Dr. W). He is such a nice guy. When I walked in the clinic I kinda freaked out because I wasn't feeling well at all, I was nervous, and I do not like talking to people when I'm in this mode. We sat down and I was immediately welcomed by a very cute, very handsome dog named K2. He's Dr. W.'s Pit Bull who has the most silky, black coat. That was quite okay with me but the scene around me made me feel claustrophobic. People were everywhere, some in wheelchairs, walkers, using canes, some laying asleep on couches; everyone was talking to each other as if they'd been friends for years. In less than 5 minutes one woman came and violated my comfort zone telling me that she knows how I feel, etc. etc. and I felt at that point that maybe I was in the wrong place and was at some church service and that we all should be holding hands, lighting candles, & singing Kumbaya. Everyone there, even the staff, are huggers and it freaked me out. I know that all of these people mean well but I am not a social person anymore. I know most of you who know me say 'whatever' when I say this but I have become a bit of a hermit and I was glad when called into my evaluation room.
Did all the usual paperwork and then Dr. W came in to evaluate me. He did a bunch of things that don't mean much to me but do in the chiropractic and FM world. Lots of move your head this way, raise your leg over to the left, etc. When it came time to do the typical tender points test, I visibly flinched at all of the 18--the worst being the 8 at my lower back. He had his assistant writing down the level of pain for all of these items and after that he said 'forget it, she has this so bad that she is going to hurt everywhere'. We then took x-rays and got to see them. Interesting stuff. The first x-ray showed that my head lilts to the left when I think it's straight. My side view showed that my vertebra are quite healthy and in good shape. He then gave me a physical exam and when he examined my back my he saw a very big sign of FM. While laying on my stomach, if you look at my back the left side looks normal but the right side looks like it has a rope buried underneath the skin and it runs all the way down to the spine. My dad saw it and said it was noticeable.
Dr. W. said I have a severe FM case and that I've probably had it a lot longer than I even knew about. He thinks it could very well be related to my childhood Dermatomyositis. He said he felt confident that I would respond to therapy. I'm still a skeptic here so I'll just tell you what happened next and you can decide what you think.
First, he took these small metal objects that look like barbels and pushed them into my jaw/TMJ area. It hurt a lot and he warned me it would. I handled it for about 15 minutes and then told him to stop. Apparently this is the epicenter of the meneges and basically the root problem. For you physician folks (D. -- you've told me this a 1000 times) he said that what he was doing was turning off the sympathetic nerve system which causes the faulty pain. I stood up and he had me repeat all the same tests we did prior to it and re-evaluated my pain. I didn't notice anything earth shattering at first. . but when I went to my tender spots on my lower back (of which I have 8 that I have never had relief from since I started showing symptoms) and 6 out of the 8 did not hurt a bit. I was impressed by that and you can decide what you want about it's efficacy.
Second, he gave me my first adjustment. Now anyone who goes to a chiropractor knows that it sounds like your neck is being wrenched off but usually doesn't hurt. He told me this shouldn't hurt but when he did it I almost jumped off the table. It hurt so bad on both sides of my neck. He said that the reason I felt pain was because there probably is so much scar tissue that he was tearing through it as he adjusted my neck.
After that, he had to move onto his other patients and guess what? I had to go to the bathroom and not just pee. I had the first normal bowel movement I've had in *4 years*. *4 years* is a long time. I don't know if I was just so nervous but I doubt it because I've been to all sorts of doctors before.
After I came back from the bathroom I did a video interview. I didn't know this was required but I obliged. The man who video taped me is a very nice man and the person who started channel 11 out of Albuquerque (a Christian religious channel -- and no, I did not tell him I was a Wiccan, as I didn't want him to have a bowel movement too). He told me the interview was me just talking and not being prompted with questions. . I guess it went well because afterwards he said that I was one of the most succinct and knowledgeable patients to explain how I feel and that he'd possibly like for me to speak at seminars in NM when I'm well. Again, I didn't tell him that I didn't share the Christian vibe but I'm sure he'll figure it out eventually. I'm being a bit sarcastic but to be honest, this man was one of the most real people I met there. He told me that I would have ups and downs (for you science types, like a sine wave) and that was exactly what I needed to hear.
By this time I was very, very tired (which is expected--in theory--because your body has been given relief after such a long time and now it wants to rest). They understood and let me take all my paperwork home with me. Of course, the check for $7000 had to be written prior to my departure.
So, I told K2 goodbye and left. I apologized to all of the nice staff because my FM fog is so bad that I didn't remember their names. Thankfully it was closing time and there was not a barrage of people wanting to share their stories with me and ask me to share mine. From now on I can say 'watch the video'.
I should explain that the doctors there intentionally foster an environment of positive energy & interaction with the other patients. They want you to bond with each other and want to use one another as your support as many people who come here come alone. I should never be upset when people are nice to me. Kindness is a rare commodity these days.
As always, when I got home I was exhausted and overwhelmed. I took a nap and just finished dinner w/ my dad outside in the cool breeze. Tomorrow I start my daily treatments. M-W-F's I have 3 per day, T-TH I have 2 per day, and Saturdays I have 1. I plan to walk to the clinic as much as I can as it's about 1 mile one way. Then I can start losing some of the whale blubber I've put on during the past year. Massage therapy will occur in the second month or so of treatment but not at this point.
So what's my pain level today? Probably an 8, with the exception of the few moments of freedom from my lower back pain. I have some feeling of relief, like the kind you get when you've been cooped up inside all winter and exercise for the first time. You feel tired but there is some sort of relief. I feel that in my back and that says a lot to me since my back has seemed to hurt forever. I'm still not going to say I am a solid believer but I'm guardedly optimistic.
I must say to my friend Tori -- *you are awesome*. She had called the clinic before I came here and sent me a card to be given to me when I arrived. When I opened the card it had a yummy photo of Billy (Corgan) inside and for her to go to all that trouble was wonderful. . especially since she suffers a lot from CFS, as I do.
I don't know when my interview will be posted on the web site but you can check for it at: www.stopfibro.com. You have to create a profile but it is for statistical purposes only. I've not received any unwanted mail from them at all.
As far as reaching me by mail. . I've debated about giving my address but decided it was okay as they are all temporary anyway. Please address any mail to my attention and send to either address (the first one being the best probably):
**my name here**
c/o Chris Haven RV Park
2030 E Street, Space 35
South Lake Tahoe, CA 96150
fax: 530-541-4248
phone: 530-541-1895
If sending packages, put note "place inside".
----------------------
**my name here**
c/o Kristi Joles
The Fibromyalgia Relief Center
961 Emerald Bay Rd.
South Lake Tahoe, CA 96150
I will probably not be responding too much to emails. So again, if you send me one I am happy and grateful and hope you know why I may not respond.
Let's see what tomorrow brings. . .
l_l
Today was my evaluation with Dr. Whitcomb (Dr. W). He is such a nice guy. When I walked in the clinic I kinda freaked out because I wasn't feeling well at all, I was nervous, and I do not like talking to people when I'm in this mode. We sat down and I was immediately welcomed by a very cute, very handsome dog named K2. He's Dr. W.'s Pit Bull who has the most silky, black coat. That was quite okay with me but the scene around me made me feel claustrophobic. People were everywhere, some in wheelchairs, walkers, using canes, some laying asleep on couches; everyone was talking to each other as if they'd been friends for years. In less than 5 minutes one woman came and violated my comfort zone telling me that she knows how I feel, etc. etc. and I felt at that point that maybe I was in the wrong place and was at some church service and that we all should be holding hands, lighting candles, & singing Kumbaya. Everyone there, even the staff, are huggers and it freaked me out. I know that all of these people mean well but I am not a social person anymore. I know most of you who know me say 'whatever' when I say this but I have become a bit of a hermit and I was glad when called into my evaluation room.
Did all the usual paperwork and then Dr. W came in to evaluate me. He did a bunch of things that don't mean much to me but do in the chiropractic and FM world. Lots of move your head this way, raise your leg over to the left, etc. When it came time to do the typical tender points test, I visibly flinched at all of the 18--the worst being the 8 at my lower back. He had his assistant writing down the level of pain for all of these items and after that he said 'forget it, she has this so bad that she is going to hurt everywhere'. We then took x-rays and got to see them. Interesting stuff. The first x-ray showed that my head lilts to the left when I think it's straight. My side view showed that my vertebra are quite healthy and in good shape. He then gave me a physical exam and when he examined my back my he saw a very big sign of FM. While laying on my stomach, if you look at my back the left side looks normal but the right side looks like it has a rope buried underneath the skin and it runs all the way down to the spine. My dad saw it and said it was noticeable.
Dr. W. said I have a severe FM case and that I've probably had it a lot longer than I even knew about. He thinks it could very well be related to my childhood Dermatomyositis. He said he felt confident that I would respond to therapy. I'm still a skeptic here so I'll just tell you what happened next and you can decide what you think.
First, he took these small metal objects that look like barbels and pushed them into my jaw/TMJ area. It hurt a lot and he warned me it would. I handled it for about 15 minutes and then told him to stop. Apparently this is the epicenter of the meneges and basically the root problem. For you physician folks (D. -- you've told me this a 1000 times) he said that what he was doing was turning off the sympathetic nerve system which causes the faulty pain. I stood up and he had me repeat all the same tests we did prior to it and re-evaluated my pain. I didn't notice anything earth shattering at first. . but when I went to my tender spots on my lower back (of which I have 8 that I have never had relief from since I started showing symptoms) and 6 out of the 8 did not hurt a bit. I was impressed by that and you can decide what you want about it's efficacy.
Second, he gave me my first adjustment. Now anyone who goes to a chiropractor knows that it sounds like your neck is being wrenched off but usually doesn't hurt. He told me this shouldn't hurt but when he did it I almost jumped off the table. It hurt so bad on both sides of my neck. He said that the reason I felt pain was because there probably is so much scar tissue that he was tearing through it as he adjusted my neck.
After that, he had to move onto his other patients and guess what? I had to go to the bathroom and not just pee. I had the first normal bowel movement I've had in *4 years*. *4 years* is a long time. I don't know if I was just so nervous but I doubt it because I've been to all sorts of doctors before.
After I came back from the bathroom I did a video interview. I didn't know this was required but I obliged. The man who video taped me is a very nice man and the person who started channel 11 out of Albuquerque (a Christian religious channel -- and no, I did not tell him I was a Wiccan, as I didn't want him to have a bowel movement too). He told me the interview was me just talking and not being prompted with questions. . I guess it went well because afterwards he said that I was one of the most succinct and knowledgeable patients to explain how I feel and that he'd possibly like for me to speak at seminars in NM when I'm well. Again, I didn't tell him that I didn't share the Christian vibe but I'm sure he'll figure it out eventually. I'm being a bit sarcastic but to be honest, this man was one of the most real people I met there. He told me that I would have ups and downs (for you science types, like a sine wave) and that was exactly what I needed to hear.
By this time I was very, very tired (which is expected--in theory--because your body has been given relief after such a long time and now it wants to rest). They understood and let me take all my paperwork home with me. Of course, the check for $7000 had to be written prior to my departure.
So, I told K2 goodbye and left. I apologized to all of the nice staff because my FM fog is so bad that I didn't remember their names. Thankfully it was closing time and there was not a barrage of people wanting to share their stories with me and ask me to share mine. From now on I can say 'watch the video'.
I should explain that the doctors there intentionally foster an environment of positive energy & interaction with the other patients. They want you to bond with each other and want to use one another as your support as many people who come here come alone. I should never be upset when people are nice to me. Kindness is a rare commodity these days.
As always, when I got home I was exhausted and overwhelmed. I took a nap and just finished dinner w/ my dad outside in the cool breeze. Tomorrow I start my daily treatments. M-W-F's I have 3 per day, T-TH I have 2 per day, and Saturdays I have 1. I plan to walk to the clinic as much as I can as it's about 1 mile one way. Then I can start losing some of the whale blubber I've put on during the past year. Massage therapy will occur in the second month or so of treatment but not at this point.
So what's my pain level today? Probably an 8, with the exception of the few moments of freedom from my lower back pain. I have some feeling of relief, like the kind you get when you've been cooped up inside all winter and exercise for the first time. You feel tired but there is some sort of relief. I feel that in my back and that says a lot to me since my back has seemed to hurt forever. I'm still not going to say I am a solid believer but I'm guardedly optimistic.
I must say to my friend Tori -- *you are awesome*. She had called the clinic before I came here and sent me a card to be given to me when I arrived. When I opened the card it had a yummy photo of Billy (Corgan) inside and for her to go to all that trouble was wonderful. . especially since she suffers a lot from CFS, as I do.
I don't know when my interview will be posted on the web site but you can check for it at: www.stopfibro.com. You have to create a profile but it is for statistical purposes only. I've not received any unwanted mail from them at all.
As far as reaching me by mail. . I've debated about giving my address but decided it was okay as they are all temporary anyway. Please address any mail to my attention and send to either address (the first one being the best probably):
**my name here**
c/o Chris Haven RV Park
2030 E Street, Space 35
South Lake Tahoe, CA 96150
fax: 530-541-4248
phone: 530-541-1895
If sending packages, put note "place inside".
----------------------
**my name here**
c/o Kristi Joles
The Fibromyalgia Relief Center
961 Emerald Bay Rd.
South Lake Tahoe, CA 96150
I will probably not be responding too much to emails. So again, if you send me one I am happy and grateful and hope you know why I may not respond.
Let's see what tomorrow brings. . .
l_l
Sunday, June 8, 2008
Blog #5--3-2-1-GO
Once again, insomnia. I was actually asleep but woke up w/ a terribly sick stomach (IBD strikes again). I did all the things to calm my tummy, again I am going to be totally open about this: gave myself an enema, took a medication for my tummy, took a sleeping pill, and now am eating saltines and Diet Sprite waiting for things to calm down.
Anyway, I am on the end of the 2nd day on our journey to South Lake Tahoe. The first day of driving was about 2 hours longer than we figured (9 - 10 hours??) and today we took a wrong turn in Laughlin and had 2 more hours added to our trip as we backtracked.
Tomorrow we only have 150 miles to go and we'll hopefully be there by noon. My goal is to get my 'house' set up, cleaned up, and then find the clinic. My first treatment begins w/ an evaluation at 2 PM on Monday.
I have been what my dad says "up" for the trip but it's will power on fumes as I have felt extremely exhausted and my pain has not let up. The 2 Type A's have gotten along very well and I'm happy to report we have not killed or maimed one another thus far.
For people who know me well, they know that I am very verbal and wear my heart on my sleeve. Some even know that I tend to use music as my way of communicating when I cannot summon the correct words (this is not some random tangent here, hang w/ me).
J. calls me a lyricist freak. I know lyrics to almost every song I've heard. Good lyrics change things for me. . a song can really suck (i.e.- any/all Country songs) but if it has a good line of lyrics I will listen to it over and over and over again.
In my humble opinion, the best lyricist in the world would be one William (Billy) Patrick Corgan. You can say all you want about his musical abilities, his attitude, etc., but he is genius when it comes to the written word. He is a true genius (he started reading around 18 months old) but instead of using it for science, math, or some other academic means, he chose to use it with his lyrics, writings, & music.
Sounds stupid, but I kid you not -- I have been to very low points in my life (***I am not suicidal now***) and the only way I managed to get through a bout without hurting myself was to listen to one of his songs, then if I could I'd listen to one more, etc., etc. and finally I'd be past the crucial time. I also have always used music as a memory tool. My memory about growing up is vague but if I hear a certain song I know exactly what year it was when I heard that song (well, the lyrics actually) and what was my emotional situation at the time. Kenny Rogers transports me back to early childhood -- before my first chronic illness occurred. Others that come to mind are Queen, Journey, U2, Van Halen, and many one-hit wonders. I didn't discover Billy Corgan until age 19 and he's literally saved my life many times over. I know many of you will say 'what a load of crap, what a hypochondriac' but it's the absolute truth.
Where does this tie in to my journey to getting my health back? It comes into play because I know that the songs I am listening to now are going to always remind me of this horrible time in my life and even though it's been awful (and still is) I have first-hand lyrics that have been rolling around in my head for the past 3 days and decided to share them with you.
I also hope that people who are hurting from whatever physical and/or mental illness to take note that the smallest things can turn you away from making that fatal mistake of taking you're own life. If you are feeling that way now, please call someone you trust and try to get through the time it will take for your friend to arrive. The following is a small, but very useful, way to throw your mind from your dark thought. Pick out a song that really speaks to you and allow your mind to not think about anything other than the words of the song. If it keeps your mind off the dark places for at least 1 minute, then try it again for another minute, or song by song. do this over and over again until help arrives. Clearly if that doesn't work, I beg you to call 911. I have read statistics that people with diseases like FM and others (MS, MD, Lupus, etc) live with constant, chronic pain and I'd bet that the majority of them have had the thoughts of suicide, and my goal is that if I can save even one person from hurting themselves, then my suffering has had a positive outcome. If you want to know why this is so important to me, you'll need to read my blogs on www.myspace.com/lunabast You will find how I handled the death of a good friend who succumbed to suicide and what I've tried to learn from it.
So here are the lyrics that have been tumbling around my head for about 4 days now. From the song 'Bring the Light', written by Billy Corgan:
here and gone oh i trust
you'd spit upon my dust
and mix my ash with your blood
a son of God you know you must arrive
in the light
What does this say to me? Well, as all lyrics it is open for interpretation but to me it sounds like someone who is surrendering to a higher authority, whether it be God or the Divine One. To me it says no matter what happens, when I'm done on this earthly plane I trust that the Divine will make me a part of her and together we will be in the light (Heaven, or as I refer to it--The Summerlands).
This set of lyrics have kept me going as each day grew closer to my departure. After I had said all of my goodbyes and was on my own, I repeated these lyrics over and over again and it became my mantra and my prayer to take the burden away from me and give it up to a higher power.
My biggest fear for the clinic is one of failure. As I've said before I am skeptical at best because I've been duped so many times before, medically speaking. I don't want to walk into that clinic on Monday with high hopes or jaded beliefs, just as a blank slate who has the confidence that I'm being guided by my destiny or fate. Letting go of the responsibility to make this clinic work, I can now quit feeling the burden of outcome (good or bad).
What's my message after all this cryptic writing? I think I've found a way around my greatest fear about coming to the clinic and that is I've given away the responsibility to someone else -- and that someone knows how things are supposed to be.
I apologize if you find this blog un-related to my health. It's not easy to describe the emotional wear and tear that a chronic illness has one you, but that was my goal here and I hope if even 1 person out there who is suffering and just making it day-by-day or minute-by-minute that they know that they are not alone and can try using music/lyrics as a way to help take your mind off the problems you have or help you articulate the very intense emotions that are going along with your physical and/or mental illness.
Don't give up on me if you hated this blog. . . since Monday is right around the corner, I will be immersing myself into this new method of healing FM and am going to do it sans the worries that it will or won't work. If you just said 'why would she be worried if it does work?' and I say to you that this is a subject for another day but it's quite common for people who have been chronically ill to become scared to leave their comfort zone, even if it's a miserable existence.
I hope the arms of slumber are surrounding each of you in restful sleep.
l_l
Anyway, I am on the end of the 2nd day on our journey to South Lake Tahoe. The first day of driving was about 2 hours longer than we figured (9 - 10 hours??) and today we took a wrong turn in Laughlin and had 2 more hours added to our trip as we backtracked.
Tomorrow we only have 150 miles to go and we'll hopefully be there by noon. My goal is to get my 'house' set up, cleaned up, and then find the clinic. My first treatment begins w/ an evaluation at 2 PM on Monday.
I have been what my dad says "up" for the trip but it's will power on fumes as I have felt extremely exhausted and my pain has not let up. The 2 Type A's have gotten along very well and I'm happy to report we have not killed or maimed one another thus far.
For people who know me well, they know that I am very verbal and wear my heart on my sleeve. Some even know that I tend to use music as my way of communicating when I cannot summon the correct words (this is not some random tangent here, hang w/ me).
J. calls me a lyricist freak. I know lyrics to almost every song I've heard. Good lyrics change things for me. . a song can really suck (i.e.- any/all Country songs) but if it has a good line of lyrics I will listen to it over and over and over again.
In my humble opinion, the best lyricist in the world would be one William (Billy) Patrick Corgan. You can say all you want about his musical abilities, his attitude, etc., but he is genius when it comes to the written word. He is a true genius (he started reading around 18 months old) but instead of using it for science, math, or some other academic means, he chose to use it with his lyrics, writings, & music.
Sounds stupid, but I kid you not -- I have been to very low points in my life (***I am not suicidal now***) and the only way I managed to get through a bout without hurting myself was to listen to one of his songs, then if I could I'd listen to one more, etc., etc. and finally I'd be past the crucial time. I also have always used music as a memory tool. My memory about growing up is vague but if I hear a certain song I know exactly what year it was when I heard that song (well, the lyrics actually) and what was my emotional situation at the time. Kenny Rogers transports me back to early childhood -- before my first chronic illness occurred. Others that come to mind are Queen, Journey, U2, Van Halen, and many one-hit wonders. I didn't discover Billy Corgan until age 19 and he's literally saved my life many times over. I know many of you will say 'what a load of crap, what a hypochondriac' but it's the absolute truth.
Where does this tie in to my journey to getting my health back? It comes into play because I know that the songs I am listening to now are going to always remind me of this horrible time in my life and even though it's been awful (and still is) I have first-hand lyrics that have been rolling around in my head for the past 3 days and decided to share them with you.
I also hope that people who are hurting from whatever physical and/or mental illness to take note that the smallest things can turn you away from making that fatal mistake of taking you're own life. If you are feeling that way now, please call someone you trust and try to get through the time it will take for your friend to arrive. The following is a small, but very useful, way to throw your mind from your dark thought. Pick out a song that really speaks to you and allow your mind to not think about anything other than the words of the song. If it keeps your mind off the dark places for at least 1 minute, then try it again for another minute, or song by song. do this over and over again until help arrives. Clearly if that doesn't work, I beg you to call 911. I have read statistics that people with diseases like FM and others (MS, MD, Lupus, etc) live with constant, chronic pain and I'd bet that the majority of them have had the thoughts of suicide, and my goal is that if I can save even one person from hurting themselves, then my suffering has had a positive outcome. If you want to know why this is so important to me, you'll need to read my blogs on www.myspace.com/lunabast You will find how I handled the death of a good friend who succumbed to suicide and what I've tried to learn from it.
So here are the lyrics that have been tumbling around my head for about 4 days now. From the song 'Bring the Light', written by Billy Corgan:
here and gone oh i trust
you'd spit upon my dust
and mix my ash with your blood
a son of God you know you must arrive
in the light
What does this say to me? Well, as all lyrics it is open for interpretation but to me it sounds like someone who is surrendering to a higher authority, whether it be God or the Divine One. To me it says no matter what happens, when I'm done on this earthly plane I trust that the Divine will make me a part of her and together we will be in the light (Heaven, or as I refer to it--The Summerlands).
This set of lyrics have kept me going as each day grew closer to my departure. After I had said all of my goodbyes and was on my own, I repeated these lyrics over and over again and it became my mantra and my prayer to take the burden away from me and give it up to a higher power.
My biggest fear for the clinic is one of failure. As I've said before I am skeptical at best because I've been duped so many times before, medically speaking. I don't want to walk into that clinic on Monday with high hopes or jaded beliefs, just as a blank slate who has the confidence that I'm being guided by my destiny or fate. Letting go of the responsibility to make this clinic work, I can now quit feeling the burden of outcome (good or bad).
What's my message after all this cryptic writing? I think I've found a way around my greatest fear about coming to the clinic and that is I've given away the responsibility to someone else -- and that someone knows how things are supposed to be.
I apologize if you find this blog un-related to my health. It's not easy to describe the emotional wear and tear that a chronic illness has one you, but that was my goal here and I hope if even 1 person out there who is suffering and just making it day-by-day or minute-by-minute that they know that they are not alone and can try using music/lyrics as a way to help take your mind off the problems you have or help you articulate the very intense emotions that are going along with your physical and/or mental illness.
Don't give up on me if you hated this blog. . . since Monday is right around the corner, I will be immersing myself into this new method of healing FM and am going to do it sans the worries that it will or won't work. If you just said 'why would she be worried if it does work?' and I say to you that this is a subject for another day but it's quite common for people who have been chronically ill to become scared to leave their comfort zone, even if it's a miserable existence.
I hope the arms of slumber are surrounding each of you in restful sleep.
l_l
Monday, June 2, 2008
Blog #4--Fears + Tears
Less than a week to go. I've started to have anxiety attacks and have been very emotional. I am like that about change. I'm scared of it and agonize until it's over. I've been that way since I was a kid and I doubt it will ever change. My Obsessive Compulsive Disorder (OCD) has been ratcheted up a notch with the upcoming move. More on OCD later.
I've been in a huge fatigue cycle. No just the 'I'm tired because I feel crappy all the time' but total exhaustive fatigue. Again CFS is the culprit, but it's a bi-product of FM. Yesterday I got up at 2 PM and went to sleep at 5 PM. I slept until 1 PM today w/ the exception of shuffling to get meds during parts of it. I normally cannot sleep that much and today I felt not just sleepy but bone-weary.
Clearly, as much as I am trying to hold myself together, I am under a lot of stress. I've cried spontaneously many times over the past week and I am having one of my 'neck headaches'.
I also am fed up and tired of feeling bad. Now that I know there is a possibility of a light at the end of a tunnel (note -- I said possibility, not reality, I'm skeptical), I am noticing the many different things that FM does to me on a daily basis and I am so done living this way. Here are some examples, and yes, some are embarrassing to write but I don't care anymore at this point.
First, due to medications for depression and FM, I have been continually constipated for well over 3 years. I'm not talking just having a small trouble getting it out, I'm talking being blocked. I take a load of flaxseed and Colace but it never helps much. I have to use enemas and sometimes be cleaned out with the meds used for a colonoscopy. Many of you are too young to know what colonoscopy prep is like but it sucks, to put it mildly. How would you feel if you felt constantly sick to your stomach and unable to clear anything out of your body correctly? As an adjunct, I have developed severe hemorrhoids which are not any fun at all.
Along that line, FM causes Irritable Bowel Syndrome (IBS) and so my stomach is usually either nauseated or horrible heartburn. The meds for the nausea are effective but leave me feeling like a zombie and cause constipation. Catch 22 again.
Onto something else - I am hot and sweaty *all the time*. Gross, huh? No, I'm not in menopause but when I do get there it will be a breeze compared to this. All of my pain meds cause you to feel hot and I'm not joking, I feel like a furnace constantly. Now with the warm weather, my FM pain has lessened some but not enough to quit the pain meds. So I'm always in the shower getting the sweat off me or wherever I am at, I have an ice pack on my back. I can be watching TV and not doing any sort of physical activity and will feel sweat pool and run down my back. Really nice, huh?
Now we openly talk about weight here. I've already written about my weight before in the previous blogs but it is so frustrating. I am 5' 2" and should weigh about 125 pounds. If you saw me from the back you'd think I was 125 pounds but when I turn around I look like a replication of Buddha. 25 pounds have accumulated in my stomach and breasts. . I wish I could say I looked pregnant but I just look fat. Again, no matter what I do, it stays this way. I have a very clear-cut diet and I'm sick to death of it. Don't get me wrong, the Nutrisystems diet is a good one and I'll stay on it until I am back to 125, but I'm pretty sick of eating the same things over and over. Then I cheat and eat something not on my diet and then play catch up to not go over my 1000 calories, which inevitably I do anyway. I'm afraid because when I'm in treatment I cannot raise my arms over my head during treatment and 6 months after it and so I am not sure if I can get the pounds off during my time there -- which is a major goal for me. Let's face it, at 37 you need to do a lot of abdominal exercises to shore up your stomach and all that I can think of cause an extension of the neck that is not allowed. I feel like I've finally 'let myself go' as they say married women do. My self esteem is at an all time low, in the negatives I'm sure.
Today's pain is an 8.5 - 9 (note -- with each blog post, I am trying to give a pain level between 0 - 10, ten being the worst, so I can keep track as I go through treatment). I have been stiff in the neck for the past few days but hoped it wouldn't turn into a neck headache, but I was wrong. How do I explain these and relate the agony of these to you? If you have migraines, you'll understand some but multiply it by 100. My muscles from the clavicle running over my shoulders to my back feel like tight ropes. Today it felt like someone was tugging on those ropes or as if someone had their hands on my shoulders and were putting all their weight on them. Then the pain over my left eye started. Throbbing pain and usually making me very light sensitive. It lasts like that for several hours and then starts to continue to move up over my head, down into my neck/jaw area, and then down my back. I literally can feel the connection of these areas as they throb together. When not throbbing, they are like live electrical shocks that don't let up. It hurts to open my mouth because of the pain and I can feel my body contracting inward as a response to the pain. So that brings me to another thing I am beginning to hate -- ice packs. I must use 1-2 ice packs a day, whether for heat minimization or pain.
Finally, the usual suspects are here. . the points in my lower back are throbbing away and my calf muscles feel like I have a major cramp in them. I went to bed at 11 PM and woke up at 1 AM and am in pretty intolerable pain -- but I just took a Percocet at 11 and they are supposedly good for 6 hours. I am worried about taking more meds but usually that is what happens. I am very worried about the lessening effects of my pain meds and that puts even more pressure on this clinic working.
I have to be ready to leave on Friday AM and have not done anything to get ready. I have doctors appointments out the butt since I am leaving for 2-3 months and I need to pack and get my 2 cats ready to go. Thank the Divine for my mom who is willing to stay here. . I know she'll keep the house pressures off of J. and will take care of my other fur babies.
I needed to vent, to rant, and to get it all out so I can hopefully go back to sleep. Make no mistake, I understand that there are people in this world who are suffering more than me but this is not a competition. The reason I write about all the 'minor' complications is because many people don't get how FM can be so horrible. They think it's a matter of just taking some pain meds and off you go -- fixed forever. Not true and if you have had a long term cycle of FM as I have, the small things start to snowball and each one adds more and more weight to the disease until it all falls down like a Jenga game. Did you know that the statistics show that 40% of long term FM patients try to commit suicide? 40%!!!! That number should shock everyone and it should also make it very obvious that this is not some hypochondriac disease here, it's real, palpable pain that never stops -- one pain is traded for another.
I mentioned OCD above and if you don't know already, OCD is caused by mis-firing of the nerves/neurons in the brain. The clinic I am attending believe that OCD and other panic related illnesses can be caused and/or exacerbated by the log-jam in the neck area. It makes total sense because if all nerves must go through the congested area in order to get to the brain it could make the nerves/neurons causing mental illnesses to be possibly subject too. I'm pretty skeptical about this as I've had OCD tendencies my entire life but thinking over the past few years, I've had some of my OCD just become off the chart. Panic attacks caused by smell (yes, smell of food cooking), my ears have become ridiculously sensitive to noise. I avoid being in loud places because it's like my ears have become finely tuned. It also explains why I never want to eat with anyone -- I hear all the noises that a normal person makes when they eat but amplified. Just hearing normal noises of chewing or the clanking of a fork against ones teeth can put me on the brink of a panic attack. I've become aware of how loud some people breathe and it drives me crazy. This is insane! I know that I've never had these issues before FM and I've been treated successfully for OCD for well over 10 years.
I guess their theory sounds plausible but I'm pretty skeptical about it. I'd gladly deal with these new OCD problems and feel 100% better physically. Let's face it, I'd take 50% better or just some level of acceptable improvement.
Sick of the complaints? Well hopefully the next few months will have me saying the opposite. However, I wrote a lot of this not only to vent but to connect to anyone who is in my shoes. When I saw the video of the clinic I am going to I kept saying 'that's me, he's talking about me'. It was as if this man had taken over my body and was explaining every last problem I have. . so I hope that I can connect to others who have a similar situation. I know how validated I felt when I heard his video and am glad to know I'm not going crazy -- that this is really happening to me.
I hope all of you are tucked in your beds and in the land of slumber. My gratitude and thanks to all of you who are with me on this journey. Most of you are silent partners but believe me, I know you are there and I am very grateful for all of you.
l_l
I've been in a huge fatigue cycle. No just the 'I'm tired because I feel crappy all the time' but total exhaustive fatigue. Again CFS is the culprit, but it's a bi-product of FM. Yesterday I got up at 2 PM and went to sleep at 5 PM. I slept until 1 PM today w/ the exception of shuffling to get meds during parts of it. I normally cannot sleep that much and today I felt not just sleepy but bone-weary.
Clearly, as much as I am trying to hold myself together, I am under a lot of stress. I've cried spontaneously many times over the past week and I am having one of my 'neck headaches'.
I also am fed up and tired of feeling bad. Now that I know there is a possibility of a light at the end of a tunnel (note -- I said possibility, not reality, I'm skeptical), I am noticing the many different things that FM does to me on a daily basis and I am so done living this way. Here are some examples, and yes, some are embarrassing to write but I don't care anymore at this point.
First, due to medications for depression and FM, I have been continually constipated for well over 3 years. I'm not talking just having a small trouble getting it out, I'm talking being blocked. I take a load of flaxseed and Colace but it never helps much. I have to use enemas and sometimes be cleaned out with the meds used for a colonoscopy. Many of you are too young to know what colonoscopy prep is like but it sucks, to put it mildly. How would you feel if you felt constantly sick to your stomach and unable to clear anything out of your body correctly? As an adjunct, I have developed severe hemorrhoids which are not any fun at all.
Along that line, FM causes Irritable Bowel Syndrome (IBS) and so my stomach is usually either nauseated or horrible heartburn. The meds for the nausea are effective but leave me feeling like a zombie and cause constipation. Catch 22 again.
Onto something else - I am hot and sweaty *all the time*. Gross, huh? No, I'm not in menopause but when I do get there it will be a breeze compared to this. All of my pain meds cause you to feel hot and I'm not joking, I feel like a furnace constantly. Now with the warm weather, my FM pain has lessened some but not enough to quit the pain meds. So I'm always in the shower getting the sweat off me or wherever I am at, I have an ice pack on my back. I can be watching TV and not doing any sort of physical activity and will feel sweat pool and run down my back. Really nice, huh?
Now we openly talk about weight here. I've already written about my weight before in the previous blogs but it is so frustrating. I am 5' 2" and should weigh about 125 pounds. If you saw me from the back you'd think I was 125 pounds but when I turn around I look like a replication of Buddha. 25 pounds have accumulated in my stomach and breasts. . I wish I could say I looked pregnant but I just look fat. Again, no matter what I do, it stays this way. I have a very clear-cut diet and I'm sick to death of it. Don't get me wrong, the Nutrisystems diet is a good one and I'll stay on it until I am back to 125, but I'm pretty sick of eating the same things over and over. Then I cheat and eat something not on my diet and then play catch up to not go over my 1000 calories, which inevitably I do anyway. I'm afraid because when I'm in treatment I cannot raise my arms over my head during treatment and 6 months after it and so I am not sure if I can get the pounds off during my time there -- which is a major goal for me. Let's face it, at 37 you need to do a lot of abdominal exercises to shore up your stomach and all that I can think of cause an extension of the neck that is not allowed. I feel like I've finally 'let myself go' as they say married women do. My self esteem is at an all time low, in the negatives I'm sure.
Today's pain is an 8.5 - 9 (note -- with each blog post, I am trying to give a pain level between 0 - 10, ten being the worst, so I can keep track as I go through treatment). I have been stiff in the neck for the past few days but hoped it wouldn't turn into a neck headache, but I was wrong. How do I explain these and relate the agony of these to you? If you have migraines, you'll understand some but multiply it by 100. My muscles from the clavicle running over my shoulders to my back feel like tight ropes. Today it felt like someone was tugging on those ropes or as if someone had their hands on my shoulders and were putting all their weight on them. Then the pain over my left eye started. Throbbing pain and usually making me very light sensitive. It lasts like that for several hours and then starts to continue to move up over my head, down into my neck/jaw area, and then down my back. I literally can feel the connection of these areas as they throb together. When not throbbing, they are like live electrical shocks that don't let up. It hurts to open my mouth because of the pain and I can feel my body contracting inward as a response to the pain. So that brings me to another thing I am beginning to hate -- ice packs. I must use 1-2 ice packs a day, whether for heat minimization or pain.
Finally, the usual suspects are here. . the points in my lower back are throbbing away and my calf muscles feel like I have a major cramp in them. I went to bed at 11 PM and woke up at 1 AM and am in pretty intolerable pain -- but I just took a Percocet at 11 and they are supposedly good for 6 hours. I am worried about taking more meds but usually that is what happens. I am very worried about the lessening effects of my pain meds and that puts even more pressure on this clinic working.
I have to be ready to leave on Friday AM and have not done anything to get ready. I have doctors appointments out the butt since I am leaving for 2-3 months and I need to pack and get my 2 cats ready to go. Thank the Divine for my mom who is willing to stay here. . I know she'll keep the house pressures off of J. and will take care of my other fur babies.
I needed to vent, to rant, and to get it all out so I can hopefully go back to sleep. Make no mistake, I understand that there are people in this world who are suffering more than me but this is not a competition. The reason I write about all the 'minor' complications is because many people don't get how FM can be so horrible. They think it's a matter of just taking some pain meds and off you go -- fixed forever. Not true and if you have had a long term cycle of FM as I have, the small things start to snowball and each one adds more and more weight to the disease until it all falls down like a Jenga game. Did you know that the statistics show that 40% of long term FM patients try to commit suicide? 40%!!!! That number should shock everyone and it should also make it very obvious that this is not some hypochondriac disease here, it's real, palpable pain that never stops -- one pain is traded for another.
I mentioned OCD above and if you don't know already, OCD is caused by mis-firing of the nerves/neurons in the brain. The clinic I am attending believe that OCD and other panic related illnesses can be caused and/or exacerbated by the log-jam in the neck area. It makes total sense because if all nerves must go through the congested area in order to get to the brain it could make the nerves/neurons causing mental illnesses to be possibly subject too. I'm pretty skeptical about this as I've had OCD tendencies my entire life but thinking over the past few years, I've had some of my OCD just become off the chart. Panic attacks caused by smell (yes, smell of food cooking), my ears have become ridiculously sensitive to noise. I avoid being in loud places because it's like my ears have become finely tuned. It also explains why I never want to eat with anyone -- I hear all the noises that a normal person makes when they eat but amplified. Just hearing normal noises of chewing or the clanking of a fork against ones teeth can put me on the brink of a panic attack. I've become aware of how loud some people breathe and it drives me crazy. This is insane! I know that I've never had these issues before FM and I've been treated successfully for OCD for well over 10 years.
I guess their theory sounds plausible but I'm pretty skeptical about it. I'd gladly deal with these new OCD problems and feel 100% better physically. Let's face it, I'd take 50% better or just some level of acceptable improvement.
Sick of the complaints? Well hopefully the next few months will have me saying the opposite. However, I wrote a lot of this not only to vent but to connect to anyone who is in my shoes. When I saw the video of the clinic I am going to I kept saying 'that's me, he's talking about me'. It was as if this man had taken over my body and was explaining every last problem I have. . so I hope that I can connect to others who have a similar situation. I know how validated I felt when I heard his video and am glad to know I'm not going crazy -- that this is really happening to me.
I hope all of you are tucked in your beds and in the land of slumber. My gratitude and thanks to all of you who are with me on this journey. Most of you are silent partners but believe me, I know you are there and I am very grateful for all of you.
l_l
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