For your reading displeasure...
So yeah.. I've been meaning to post an entry for like a month now :P
I have had a few really good days lately.. and unfortunately a few really bad days lately. I keep trying to remind myself on the bad days (like the past 3 days) that the better days will come soon. But when I am IN the bad day.. In the pain.. in the fog.. in the exhaustion.. I get so overwhelmed and depressed. I get SO mad at my body and my brain. I HATE when I can't do things I want to do. Okay.. let me rephrase that.. the things I NEED to do. Laundry was a challenge this week. Grocery shopping was a challenge. Changing the busted lightbulb was a challenge. I couldn't drive the past few days and that frustrates me to no end. When it gets THAT bad. When I have to make the decision whether or not to ask for help. [Guilt rant up ahead] When I have to ask for rides to places.. Help with chores. I get this overwhelming feeling of guilt when I ask for help.. like I am putting people out. My dad drove me to the doctor and to run errands Monday and Tuesday. My mom drove me to the pharmacy and to get dinner Wednesday. I know I shouldn't feel bad about this.. and don't get me wrong.. I appreciate it.. and I tell them how much I do.. But I feel this frustration.. I am 30 years old and they are in their 60s.. I should be taking care of THEM.. not the other way around. I feel guilty when they tell me how they are tired from working all day.. and all I can think is "You have no idea what tired feels like". Okay.. that was mean. But I really don't think people get how utterly exhausted I get. I know some of you have felt this feeling before. I just get so depressed when I think about all the stuff a normal 30 year old woman accomplishes in a day and I struggle just to shower and get dinner some days.
My boyfriend Mitch and my best friend Christina help me and always offer me help (they are the bestestest and I Love them with all my heart).. but I hate asking them because I am scared I will not be able to return the favor. I try to do what I can for them when I am having a good day.. but I never feel like it's enough.. so I do this retarded thing where I spend money I don't have on people because I feel like I have to "repay" them for driving me places. Ugh. I have issues.
I just want more "good" days.. I want simple tasks to be easier. I don't want to have to pay for it the next day when I do a lot the day before. I don't want the small amount of energy I do have to only go toward doing chores... I want to have a life. I feel like my whole life is maintanence. Laundry. Cleaning. Grocery shopping. Doctors apppointments. Pharmacy. I want an actual life. I remember what it felt like years ago to not have to worry about energy. I took it for granted. I had no idea I could feel like this.
Anyway.. I promised I was going to document when I have GOOD days.. but I always forget to do that (and I am in lots of pain today, so please excuse the negative vibe of this post).
GOOD NEWS: The weekend of Halloween, my boyfriend and I went to Bayville Scream Park which was SO much fun.. and I want to do more things like that. I had SO much fun that night. I know I probably should have documented that night right after it happened..lol.. But I am a lazy LJ poster.
GOOD NEWS: I went for my checkup at the Breast Oncologist last week and my boobies are doing well! :) It was SUCH a relief because I was SO nervous about this appointment. There is one cyst that got a lil bigger since last time was checked.. but I am NOT going to worry about it.. We are keeping an eye on it and I am putting it out of my head and that's that. I have been trying really hard since the surgery in 8/06 to not continue to worry about what MAY or MAY NOT happen in the future.. I am doing the smart thing by going fo rregular check ups and sonograms now.. and we are keeping an eye on the problem areas.. and that is the best I can do. I can't freak out anymore about what I do not have control over.. At least if another problem does arise, it will be detected early. Ugh.. I sound like a fookin motivational speaker. Anyway.. my friend Pamela is unfortunately going through everything I went through last year.. and I have been thinking about her all day today because today was her surgery. *HUGS
mela_4_me *
HEALTH UPDATE: (
feyandstrange please read this when you get a chance) Monday I went to my CFIDS/Fibro doc to go over the tons of bloodwork I had done a few weeks ago. I hadn't had my virals checked in a year due to health insurance issues.. so I was curious to see how things have changed in a year..
WELL..... Unfortunately I have a few NEW things to add to my list of ailments. I have been spending the past 2 days researching them and printing out info to further educate myself.
My HHV6 levels were the highest they had ever been. My doc wanted to put me on a controversial antiviral drug that is currently undergoing clinical trials called "Valcyte" It is currently used to treat AIDS and CMV patients. Well after learning that the risks incluse INFERTILITY and CANCER.. I passed. No thank you. Anyway.. Here is a link to the clinical study for those of you CFIDSers that are interested:
Valganciclovir (Valcyte) for Chronic Fatigue Syndrome Patients Who Have Elevated Antibody Titers Against Human Herpes Virus 6 (HHV-6)and Epstein-Barr Virus (EBV)
The NEW things the bloodwork came up with is that I have Mycoplasma Pneumoniae, an elevated C-Reactive Protein (CRP), and a Carnitine Deficiency. All the other stuff that is normally abnormal in my bloodwork was still abnormal. Anyway.. here are links explaining what those fun things are.. for those of you interested:
Mycoplasma Pneumoniae
Elevated C-Reactive Protein (CRP)
Carnitine Deficiency
If any of my LJ friends with CFIDS or Fibromyalgia also have any of these things or know anything about them, please comment!
Anyway.. I have to go back to this doc in 2 weeks for more bloodwork and I have to get blood work done for my upcoming endocrinologist appt (Losing this much blood can not be healthy. Ironic, no?) I know I have lots more I wanted to write about.. but i think I'm worn out after making all those linkypoos. And I've whined enough for one night. If you made it this far and are still reading this crap, I wish you a very Happy Thanksgiving. I'll post agian when I'm feeling better. I'll make a nice shiny happy post soon.. Promise.
<3
I have had a few really good days lately.. and unfortunately a few really bad days lately. I keep trying to remind myself on the bad days (like the past 3 days) that the better days will come soon. But when I am IN the bad day.. In the pain.. in the fog.. in the exhaustion.. I get so overwhelmed and depressed. I get SO mad at my body and my brain. I HATE when I can't do things I want to do. Okay.. let me rephrase that.. the things I NEED to do. Laundry was a challenge this week. Grocery shopping was a challenge. Changing the busted lightbulb was a challenge. I couldn't drive the past few days and that frustrates me to no end. When it gets THAT bad. When I have to make the decision whether or not to ask for help. [Guilt rant up ahead] When I have to ask for rides to places.. Help with chores. I get this overwhelming feeling of guilt when I ask for help.. like I am putting people out. My dad drove me to the doctor and to run errands Monday and Tuesday. My mom drove me to the pharmacy and to get dinner Wednesday. I know I shouldn't feel bad about this.. and don't get me wrong.. I appreciate it.. and I tell them how much I do.. But I feel this frustration.. I am 30 years old and they are in their 60s.. I should be taking care of THEM.. not the other way around. I feel guilty when they tell me how they are tired from working all day.. and all I can think is "You have no idea what tired feels like". Okay.. that was mean. But I really don't think people get how utterly exhausted I get. I know some of you have felt this feeling before. I just get so depressed when I think about all the stuff a normal 30 year old woman accomplishes in a day and I struggle just to shower and get dinner some days.
My boyfriend Mitch and my best friend Christina help me and always offer me help (they are the bestestest and I Love them with all my heart).. but I hate asking them because I am scared I will not be able to return the favor. I try to do what I can for them when I am having a good day.. but I never feel like it's enough.. so I do this retarded thing where I spend money I don't have on people because I feel like I have to "repay" them for driving me places. Ugh. I have issues.
I just want more "good" days.. I want simple tasks to be easier. I don't want to have to pay for it the next day when I do a lot the day before. I don't want the small amount of energy I do have to only go toward doing chores... I want to have a life. I feel like my whole life is maintanence. Laundry. Cleaning. Grocery shopping. Doctors apppointments. Pharmacy. I want an actual life. I remember what it felt like years ago to not have to worry about energy. I took it for granted. I had no idea I could feel like this.
Anyway.. I promised I was going to document when I have GOOD days.. but I always forget to do that (and I am in lots of pain today, so please excuse the negative vibe of this post).
GOOD NEWS: The weekend of Halloween, my boyfriend and I went to Bayville Scream Park which was SO much fun.. and I want to do more things like that. I had SO much fun that night. I know I probably should have documented that night right after it happened..lol.. But I am a lazy LJ poster.
GOOD NEWS: I went for my checkup at the Breast Oncologist last week and my boobies are doing well! :) It was SUCH a relief because I was SO nervous about this appointment. There is one cyst that got a lil bigger since last time was checked.. but I am NOT going to worry about it.. We are keeping an eye on it and I am putting it out of my head and that's that. I have been trying really hard since the surgery in 8/06 to not continue to worry about what MAY or MAY NOT happen in the future.. I am doing the smart thing by going fo rregular check ups and sonograms now.. and we are keeping an eye on the problem areas.. and that is the best I can do. I can't freak out anymore about what I do not have control over.. At least if another problem does arise, it will be detected early. Ugh.. I sound like a fookin motivational speaker. Anyway.. my friend Pamela is unfortunately going through everything I went through last year.. and I have been thinking about her all day today because today was her surgery. *HUGS
mela_4_me *
HEALTH UPDATE: (
feyandstrange please read this when you get a chance) Monday I went to my CFIDS/Fibro doc to go over the tons of bloodwork I had done a few weeks ago. I hadn't had my virals checked in a year due to health insurance issues.. so I was curious to see how things have changed in a year..
WELL..... Unfortunately I have a few NEW things to add to my list of ailments. I have been spending the past 2 days researching them and printing out info to further educate myself.
My HHV6 levels were the highest they had ever been. My doc wanted to put me on a controversial antiviral drug that is currently undergoing clinical trials called "Valcyte" It is currently used to treat AIDS and CMV patients. Well after learning that the risks incluse INFERTILITY and CANCER.. I passed. No thank you. Anyway.. Here is a link to the clinical study for those of you CFIDSers that are interested:
Valganciclovir (Valcyte) for Chronic Fatigue Syndrome Patients Who Have Elevated Antibody Titers Against Human Herpes Virus 6 (HHV-6)and Epstein-Barr Virus (EBV)
The NEW things the bloodwork came up with is that I have Mycoplasma Pneumoniae, an elevated C-Reactive Protein (CRP), and a Carnitine Deficiency. All the other stuff that is normally abnormal in my bloodwork was still abnormal. Anyway.. here are links explaining what those fun things are.. for those of you interested:
Mycoplasma Pneumoniae
Elevated C-Reactive Protein (CRP)
Carnitine Deficiency
If any of my LJ friends with CFIDS or Fibromyalgia also have any of these things or know anything about them, please comment!
Anyway.. I have to go back to this doc in 2 weeks for more bloodwork and I have to get blood work done for my upcoming endocrinologist appt (Losing this much blood can not be healthy. Ironic, no?) I know I have lots more I wanted to write about.. but i think I'm worn out after making all those linkypoos. And I've whined enough for one night. If you made it this far and are still reading this crap, I wish you a very Happy Thanksgiving. I'll post agian when I'm feeling better. I'll make a nice shiny happy post soon.. Promise.
<3