Internet, doctors, etc.
With our internet provider, we're allowed 10 gig usage per month. My husband's classes start Monday --- 6 on-line classes. Tonight he said that we'd have to "watch our internet usage." I think that means I'll have to stay off the internet or go to the library if his classes have very much data to download. going to the library takes too much energy (11 miles away) and they only allow a person to stay on a computer 45 minutes per day. If I'm right, I might as well give up on email altogether, and I'll be off of DS until May.
I was thinking about when I first got sick. I was on Doxy for about three months. While I was taking it, I gradually felt better. About a month after I quit taking it, I started feeling worse........after 2 1/2 months, I was struggling to get through each day. I told my husband that I wanted to try Doxy again for a while. He laughed and said, "Why? That's silly. You tested positive for Lupus and Epstein-Barr. An antibiotic isn't going to help that." Sigh. So much for that. I can't pay for it, and he won't. Sometimes I wish I was a mule so he could just go ahead and shoot me.
At my next appt. with my PCP, i'm going to request a referral for a new Rheumy. The one I'm seeing now has done nothing. He did take some x-rays and blood, but that's it. He hasn't prescribed any meds. He told me to stop taking neurontin. When I told him that the pain was so bad that I couldn't sleep, he told me to take Lortab that was prescribed by another doctor for a different reason. I asked what do I do when I run out of Lortab -- he said go see a pain management specialist. When I went to a podiatrist for plantar fasciitis, he offered to give me a shot for that! At my last appt., he told me that I looked depressed and I need Cymbalta -- he said to see my PCP at Blanchfield for it, the insurance would never approve his prescrip. He also told me about women in his home country (India) who did weaving and embroidery when they were in their 80's and they had no health problems -- mind over matter......oh, yeah and come back in 6 months. I ran a search on his name for critiques --- two of his patients said that they told them that he does not believe that there is any such thing as CFS or fibromialgia.
I'm tired, in more ways than one. "Don't give up. It's not over yet." Why can't I just hibernate for a few months, or years?
I was thinking about when I first got sick. I was on Doxy for about three months. While I was taking it, I gradually felt better. About a month after I quit taking it, I started feeling worse........after 2 1/2 months, I was struggling to get through each day. I told my husband that I wanted to try Doxy again for a while. He laughed and said, "Why? That's silly. You tested positive for Lupus and Epstein-Barr. An antibiotic isn't going to help that." Sigh. So much for that. I can't pay for it, and he won't. Sometimes I wish I was a mule so he could just go ahead and shoot me.
At my next appt. with my PCP, i'm going to request a referral for a new Rheumy. The one I'm seeing now has done nothing. He did take some x-rays and blood, but that's it. He hasn't prescribed any meds. He told me to stop taking neurontin. When I told him that the pain was so bad that I couldn't sleep, he told me to take Lortab that was prescribed by another doctor for a different reason. I asked what do I do when I run out of Lortab -- he said go see a pain management specialist. When I went to a podiatrist for plantar fasciitis, he offered to give me a shot for that! At my last appt., he told me that I looked depressed and I need Cymbalta -- he said to see my PCP at Blanchfield for it, the insurance would never approve his prescrip. He also told me about women in his home country (India) who did weaving and embroidery when they were in their 80's and they had no health problems -- mind over matter......oh, yeah and come back in 6 months. I ran a search on his name for critiques --- two of his patients said that they told them that he does not believe that there is any such thing as CFS or fibromialgia.
I'm tired, in more ways than one. "Don't give up. It's not over yet." Why can't I just hibernate for a few months, or years?
Replies
Um, yes! Time for a new Rheumy! I\'ve been told that one a patient goes to a doctor and presents with more than three symptoms, the doctor (in his head) writes them off. It\'s like it\'s symptom overload, and they don\'t have the time to narrow things down. JEEPERS! Isn\'t this why they get the big bucks? Seems that they\'re always pawning us off on other doctors for EVERYTHING. They don\'t really know about CFS.....and aren\'t really interested in patient\'s with this annoying array of troubles! We are wasting their time.....so they refer us out! Rheumy\'s have some meds to offer a person with lupus or Fibro....Cymbalta being one. My daughter has fibro and her Rheumy just put her on Cymbalta. So far so good....but my daughter is also bi-polar
(I think there needs to be a fortune cookie for DS that says \"you will learn how to run a support site...techy stuff, and all!)....and the Cymbalta is mainly for that. They put her ON Neurontin. She says it helps with her pain. So, I get it that we\'re all different, but some doctors can really make you feel out of line for just BEING there! It\'s just wrong! I would get a new set of eyes on my conditions. My daughter also has lupus! They offer her steroids when she has a flare, and her doctor wants to start her on Plaquenil, but Krystin refused it. She\'s afraid of this drug. They may be because the Rheumy told her it might make her blind. Well, I can see where that might put some fear into a young\'un!! We just pray that her lupus remains stable.
It would be a real shame if you can\'t get on DS because of your husbands needs. Not that they aren\'t important......but what about yours? Can you get your hands on a laptop without spending a bunch\' of money? I had to do that. I just can\'t get out of bed SO OFTEN that I can\'t make it into the other bedroom and sit up to type. I hope this works out for you!
Interesting that the Doxy made you feel better!!! Hmmmmmmmm, I wonder which doctor, in which specialty would refer you to the proper doctor to try and figure that one out? Have you another fortune cookie????
As one of your new pals I am hopeful......praying that a solution can be found so you can continue on here........have your time to talk..........I can\'t speak for you.......but to me having DS has helped me in more ways than the majority of my doctors, because people here get the challenges, understand and/or have experienced the symptoms...........share the journey and give each other laughter as well as support.........and friendship. I don\'t know what your internet provider charges to increase your programming, but I bet that the difference is wayyyyy less than a lot of doctors and/or therapists.
DS is a great program for our all over mental, spiritual and phsyical well being..............just something to mull over with your mate...........I would miss you but even more importantly I think DS is good for people who deal with chronic health issues. It helps me bring a healthy % of the challenges here and allows me more time to talk about other things with the rest of the people in my life. It has helped me regain a sense of joy, laughter........a balance I thought I had lost....................praying that you can find a better doc/or rheumy........that other rheumy was acting like an idiot..........wow, seriously an idiot! so sorry you had to deal with that mess!
and i hope you can revisit options for medicines...........that help, easy inflammation, make you feel better..........sending love and hugs and prayers up to the one who knows all and loves us better than anyone possibly could....................may the world bring peace to your door today in MonKY!!!! love, ruthie
I\'m sorry you had to deal with an uneducated Dr with poor empathy skills. I\'ve had bad experiences with Rheumys. My FMS was dx\'d by one and at first he was patient but he grew frustrated. He doesn\'t even accept fibro patients anymore. Personally, I believe that a lot of drs just aren\'t taught enough about our illnesses and it\'s a hit to their ego when they can\'t help us. It\'s SO important that people currently in med school are taught about us! Remember, they used to think MS was \"hysteria\"! That being said, there ARE knowledgeable and compassionate drs out there for us. I found an amazing internist that blends traditional with alternative at a FMS/CFS conference years ago. Expensive since she\'s out if network but worth it. Have you checked out any of the \"good Dr lists\" online? I know their not always in everyone\'s area but maybe worth a try?
I hope you can find a way to stay on here while your hubby takes his classes! I\'m enjoying getting to know you and you\'d be missed!
Sending love and hugs to you...
CFS brain fog: Hello....my son-in-law is a computer geek. He builds, installs, and troubleshoots major systems for a living. May he will have some internet access ideas for me. He built our PC as well as my brother\'s. Maybe he can get or rebuild a cheap laptop for me. DS really does me good. Well, not DS itself, but the people, the friends I\'ve found on DS ---YOU!
Meds: The Doxy episode may have been a fluke, but my symptoms were so much like Lyme disease and I got so close to \"normal\" before I quit taking it, I\'d like to try it again. One GP actually told me that I had Lyme disease, initially, and put me on Doxy as a treatment for Lyme. I\'m on Neurontin now. I was on Plaquenil before I had to change Rheumys -- I tested positive for Lupus, but I don\'t meet enough criteria to be diagnosed with full blown Lupus. Crazy. My old Reumy told me that Plaqenil is okay as long as you get your eyes checked every year.
All of the things going on with health insurance now really scares me. Right now, I have really good insurance. I\'m on Medicare because I\'m drawing partial disability, but I\'m also still on Military Tricare Prime. I want to exhaust all possibilities while I still have good insurance. Right now, a have a really good PCP, but he is a soldier. Who knows what I\'ll get when he transfers, so I want to do what I can while I can!
I know a lady who claimed she had fibro for years, but she would still do the things that she wanted to do. Then one day, she decided that she was just gonna \"heal\" herself, and wa-la, she was all better. Maybe she saw my Rheumy. At any rate, people like that ruin it for the rest of us! My family and my husband try to be supportive. They believe me. They know how this disease has eaten up so much of the life that I love, but they don\'t understand. YOU do.
Yes WE DO! And we need each other. And we need you. I personally, believe that God puts people here to meet each other and become friends....and share.....Spiritually, physically, in every way, we are more helpful to each other than any doctor could ever be. They have almost become secondary to me in this, the eight year with CFS/ME. I really come HERE with my questions, my thoughts, my opinions, my prayer requests...and I get the most amazing help, from YOU guys and the most sincere love and outpouring of help that I\'ve ever had in my life as a healthy person.
This place is a wonderful, wonderful place. Don\'t go away.
Or I will bite you.
I hope you find a solution to the internet issue. We can use a certain amount(not sure how much), and then another large \"chunk\" of extra internet usage only adds $10 a month. If you could double check with your provider, and find out how much more additional usage could be, hopefully your husband would be willing to accept a small additional fee per month. If I wasn\'t able to come on DS regularly, I would be very lonely indeed. I hope this is resolved - I would miss seeing you on here! Praying you find a rheumy who knows what he\'s talking about with fibro.
Oh! \" Mind over matter\"yeah right! He must be a cousin of that Dr Singh who nearly killed me with the wrong meds.And went I went back to see him for the\"LAST TIME\" he said I had to accept my karma for being sick and there was nothing he could do.Doctors sure aren\'t like the old days, they are usually so fixated on their computors and rushed and quite impersonal.You almost feel like you\'re bothering them, especially if you are not a simple case.Hey pilot...ROCK...you can\'t go and leave us now.Hope you can find some solution with the computor.Hope you get some good help with that \"victoria secret model body\" of yours girl.Love to you xoxo.
I promise to pray for you to find the calm through ........beyond any fears you might have. When we turn it over to HIM........he comes up with INGENIOUS SOLUTIONS..........we\'ll pray for you and again.......we\'re so glad to have made a new friend in you......God Bless and Calm You..........let Him give you peace.......love ya PR.........you\'re alright! xoxoxoxo