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Kind of funny...the problem with CFS. Right...where do I begin?
Well...here's at least one, of a thousand problems with CFS.
I have been on here since January. Several of my posts talk about a feeling of infection, feeling winded, adrenal problems, etc. I have felt since after Christmas, a bug come in and settle on my respiratory tract. It is almost the middle of March. For almost 3 months, this has been going on. As time marches on, I have become worse.
I went to my CFS specialist at Woodland's Healing Center. My doctor is a well known CFS doc who studied from Dr. Poesnecker, who believed that the adrenal gland was responsible for all illness. My doctor does not feel that way. However, he does feel that CFS can cause everything. Even if that is true...the things that it causes need to be treated! This bug, that I have seen him 3 times about, was just.....a virus, a bug, Chronic Fatigue Syndrome. A flare....ride it out!
Meanwhile, time is ticking and I am growing weaker, more tired and I have a never ending frog residing in my throat. Phlegm, spit, cough, spit...pain....spit. The grim reaper seemed to be walking around me.
After my little trip to New York, where I tried to be wicked without much success, I came home and this infection became a bear of a beast. DANGER, DANGER!! Fever, aching from head to toe, and inability to talk prompted me to go to a specialist. Ironically, I found the specialist due to a call from a physician, who wanted to buy a pair of earrings from me. I was at his hospital the week before and he wanted earrings to match the necklace he bought for his beautiful wife.
Because I was sick, I didn't even care about his wanting to purchase earrings from me. I said to him in a hardly audible tone, "I need a doctor now. I feel like I am dying. I have the flu or something like it." I explained to him that I thought I needed an Ear Nose and Throat doctor. He agreed and his secretary connected me to a great doctor.
I had to wait over an hour to get into this doctor. Meaning, I sat in the waiting room for over an hour. I was about ready to pass out, but I didn't care. He looked in my sinuses and saw...nothing. He looked at my throat and saw...nothing. He sprayed something up my nose to numb it, quickly stuck a tube in my nose and down my throat and said, "Yup, quite a red mess you got going on in there. This scope gives a lot of information." WHAT?? WHAT IS IT?
"You have tracheal bronchitis. BAD. You have it really bad." I want to get you better. But don't expect it to happen over night!
He then said, "You are too young to be on medicare. You are such an attractive young lady. I can't believe you are ill. What do you have?" I responded, "CFS and Fibromyalgia along with Interstitial Cystitis." He shook his head and said, I hate the illness Fibromyalgia. There isn't much that can be done." EEEEEKK!! Regardless, he gave me all of my medicines for free and I only had to purchase the prednisone.
Z-pack was prescribed as an antibiotic, large doses of prednisone, a steroid nose inhaler, diflucan and Nexium because he also said that I have GERD. I knew I had GERD, but he said it was coming up and hitting my trachea as well.
So, here's the problem with CFS. When you go to a CFS specialist or an internist who is up on CFS, they dismiss everything as a flare! A virus, something that can't be found. This aggravates me. This is not the first time something I have had is put on this illness. For 2 years I suffered with endometriosis pain and was told it was pelvic pain caused by Fibromyalgia. I wanted this doctor to refer me to another doctor. Instead he dropped me as a patient and said I was not accepting my diagnosis. "No, you are right, I am not." I found a good gyn, had surgery and started treatment. I then sent that CFS doc the surgical report to say "hey, here it is...and it isn't fibromyalgia," which I didn't develop until 2002 and that was 1993.
This one GYN said to me, and I agree with her, "CFS is a wastebasket diagnosis for many illnesses or when someone doesn't know what it is, it's CFS." It sounds like she is saying CFS doesn't exist, but she is not. She is asking, what is CFS? But you know, we are all wondering that. What is it? Everyone is guessing at how to treat it. Because each of us responds so differently to treatment. Some heal from having mercury fillings removed, some from changing their diet, some from doing nothing different!! It's a mixed bag. What kills one, helps another.
We are all our own doctors. The problem for me these past couple of weeks was, I was becoming so sick that I could not think straight enough to be my own doctor because I got caught up in the, "it's CFS, that's what it is." I wasn't sure where to turn once I had to stop blaming it on CFS. Clearly my doctor has no idea. He isn't recommending anyone. He doesn't say "Hey, there is a great ENT doctor to go to." He just keeps tapping his fingers, beneath his chin, as he pontificates on what to do. I want to SCREAM, as I am sitting there wanting some guidance. Not wanting to have to be the doctor, when I am so unwell. And, I was so unwell, to the point of leaving the Ear Nose and Throat doctor's office and getting lost in the parking lot, saying the F word as loudly as possible and having a mini breakdown, due to the infection and the lack of sleep. I am not saying, "Oh, poor me." I am looking back with two feelings; Laugher, as I looked scary and like an animal that had just been let out of a cage, and also fear. Fear because I was so out of it and something really bad could have happened due to my vulnerability. No one guiding me, just my gut which is for the most part right.
UGH!! The anger! At least I have energy even slightly for anger.
I feel for those that can't express, or feel any of those emotions due to being so ill and so unable, to be their own advocates. May there be a beacon of light in every fellow CFS sufferers life, a port in the storm steering them where they need to be. For as different as we may be, we are all in this together. :victory:
Kind of funny...the problem with CFS. Right...where do I begin?
Well...here's at least one, of a thousand problems with CFS.
I have been on here since January. Several of my posts talk about a feeling of infection, feeling winded, adrenal problems, etc. I have felt since after Christmas, a bug come in and settle on my respiratory tract. It is almost the middle of March. For almost 3 months, this has been going on. As time marches on, I have become worse.
I went to my CFS specialist at Woodland's Healing Center. My doctor is a well known CFS doc who studied from Dr. Poesnecker, who believed that the adrenal gland was responsible for all illness. My doctor does not feel that way. However, he does feel that CFS can cause everything. Even if that is true...the things that it causes need to be treated! This bug, that I have seen him 3 times about, was just.....a virus, a bug, Chronic Fatigue Syndrome. A flare....ride it out!
Meanwhile, time is ticking and I am growing weaker, more tired and I have a never ending frog residing in my throat. Phlegm, spit, cough, spit...pain....spit. The grim reaper seemed to be walking around me.
After my little trip to New York, where I tried to be wicked without much success, I came home and this infection became a bear of a beast. DANGER, DANGER!! Fever, aching from head to toe, and inability to talk prompted me to go to a specialist. Ironically, I found the specialist due to a call from a physician, who wanted to buy a pair of earrings from me. I was at his hospital the week before and he wanted earrings to match the necklace he bought for his beautiful wife.
Because I was sick, I didn't even care about his wanting to purchase earrings from me. I said to him in a hardly audible tone, "I need a doctor now. I feel like I am dying. I have the flu or something like it." I explained to him that I thought I needed an Ear Nose and Throat doctor. He agreed and his secretary connected me to a great doctor.
I had to wait over an hour to get into this doctor. Meaning, I sat in the waiting room for over an hour. I was about ready to pass out, but I didn't care. He looked in my sinuses and saw...nothing. He looked at my throat and saw...nothing. He sprayed something up my nose to numb it, quickly stuck a tube in my nose and down my throat and said, "Yup, quite a red mess you got going on in there. This scope gives a lot of information." WHAT?? WHAT IS IT?
"You have tracheal bronchitis. BAD. You have it really bad." I want to get you better. But don't expect it to happen over night!
He then said, "You are too young to be on medicare. You are such an attractive young lady. I can't believe you are ill. What do you have?" I responded, "CFS and Fibromyalgia along with Interstitial Cystitis." He shook his head and said, I hate the illness Fibromyalgia. There isn't much that can be done." EEEEEKK!! Regardless, he gave me all of my medicines for free and I only had to purchase the prednisone.
Z-pack was prescribed as an antibiotic, large doses of prednisone, a steroid nose inhaler, diflucan and Nexium because he also said that I have GERD. I knew I had GERD, but he said it was coming up and hitting my trachea as well.
So, here's the problem with CFS. When you go to a CFS specialist or an internist who is up on CFS, they dismiss everything as a flare! A virus, something that can't be found. This aggravates me. This is not the first time something I have had is put on this illness. For 2 years I suffered with endometriosis pain and was told it was pelvic pain caused by Fibromyalgia. I wanted this doctor to refer me to another doctor. Instead he dropped me as a patient and said I was not accepting my diagnosis. "No, you are right, I am not." I found a good gyn, had surgery and started treatment. I then sent that CFS doc the surgical report to say "hey, here it is...and it isn't fibromyalgia," which I didn't develop until 2002 and that was 1993.
This one GYN said to me, and I agree with her, "CFS is a wastebasket diagnosis for many illnesses or when someone doesn't know what it is, it's CFS." It sounds like she is saying CFS doesn't exist, but she is not. She is asking, what is CFS? But you know, we are all wondering that. What is it? Everyone is guessing at how to treat it. Because each of us responds so differently to treatment. Some heal from having mercury fillings removed, some from changing their diet, some from doing nothing different!! It's a mixed bag. What kills one, helps another.
We are all our own doctors. The problem for me these past couple of weeks was, I was becoming so sick that I could not think straight enough to be my own doctor because I got caught up in the, "it's CFS, that's what it is." I wasn't sure where to turn once I had to stop blaming it on CFS. Clearly my doctor has no idea. He isn't recommending anyone. He doesn't say "Hey, there is a great ENT doctor to go to." He just keeps tapping his fingers, beneath his chin, as he pontificates on what to do. I want to SCREAM, as I am sitting there wanting some guidance. Not wanting to have to be the doctor, when I am so unwell. And, I was so unwell, to the point of leaving the Ear Nose and Throat doctor's office and getting lost in the parking lot, saying the F word as loudly as possible and having a mini breakdown, due to the infection and the lack of sleep. I am not saying, "Oh, poor me." I am looking back with two feelings; Laugher, as I looked scary and like an animal that had just been let out of a cage, and also fear. Fear because I was so out of it and something really bad could have happened due to my vulnerability. No one guiding me, just my gut which is for the most part right.
UGH!! The anger! At least I have energy even slightly for anger.
I feel for those that can't express, or feel any of those emotions due to being so ill and so unable, to be their own advocates. May there be a beacon of light in every fellow CFS sufferers life, a port in the storm steering them where they need to be. For as different as we may be, we are all in this together. :victory: