Lyme Update #16 *Lyme Winning–Me, blew a gasket and leaking oil

Let’s Talk Lyme

Last update, we talked about IV Therapy as a treatment option for Chronic Lyme Disease. IV Therapy is one type of medicine to help you heal. I also take a close to 20 prescriptions and who knows how many supplements. Insurance doesn’t pay for the IV Therapy which is quite common. To ask a question thru the patient Portal it’s $45 dollars. I blew a gasket last week and the portal is running hot. I’m blessed we have the money and see a top Lyme Doctor. I think there is a book called She’s Come Undone. I came undone and still finding parts.

Before quitting work, I was a highly successful, the top salesperson in the company. I set very high goals for myself and those who interact with clients. If I made an error I was accountable to make it right with the clients. If one of my people made a mistake, they got the eye and then I had to take responsibility.

There are several PA’s working in the office, mine is the hard ass, just the way I like it. I meet “The” PA while mine was out. I wasn’t impressed but chalked it up to being new. David and I have conference calls to see how adjusted to medicine, all the questions you wish would end. I heard my PA was not available for two weeks so we are meeting with the PA another PA. I am meticulous about my health care, I would reschedule before going to a fill in. I kept saying I’m not talking to her. She was reading questionnaire and David was answering. She said Melinda how are you feeling, ” ok except I almost split my head open. The knot was 5-6 inches big and it really hurt. ” Oh, that sounds like it hurt. My firecracker was lit and would blow any minute. In addition to passing over hitting my head on concrete, she said the IV that was on backorder was in and she would a one week protocol. After the one week, I am off IV’s and take ton o meds. She even indicated we might be able to coordinate to have my port removed.

IMG_1702

A couple of hours later I’m putting my medicine for the week. Right away I notice two drugs on the schedule I don’t take. I became a complete baby and ass. I refused to take my IV’s or other meds last week. We’ve dipped into retirement money to save my life. I don’t think I expect to much from the office. First she would have seen none of my Psychiatric medicines are manages my the Lyme Doctor. The had written at bottom to continue to take two Xanax at bedtime. RED FLAG. If an IV medicine has been out of stock for months, I would as the person in charge if any where delivered. RED FLAG. My head still has a painful bump and on going headaches. So, nothing they can do. RED FLAG. She wrote the new oral prescriptions and changed to date to travel to their office instead of later.

The point other than the rant is if you are not feeling right, stop and have them start at beginning. If you’re dealing with another person instead of you normal person. Slam the breaks. I was so worked up, the chest pains started. I decided I would wait until morning to write the $45 letter to my PA

Chronic Lyme Disease is not a common cold or chicken pox, people die from Lyme. I didn’t want to add to the stats. I’m not suggesting you blow a fuse. If you are not getting the treatment expected or information is not shared with you, you have no clue when they think you’ll get well. Get a new doctor and maybe scream.

There are many details to manage everyday. If I can keep track with only 30-40% cognitive ability, what’s their excuse?

I still owe you a story about TSA checking my body parts for the world to see. Be prepare if you flew in/out Reagan National.

I’m always open for questions, you’re not bothering me and I’m glad to help.

🙂

M

8 Comments »

  1. Hey lady, I hope you had your head checked out. That is a nasty bump! I can totally, totally feel and relate to your frustration and anger about your visit. I had a meltdown at the doctor’s (I had to see the other doctor in the office) about 6 weeks ago myself. My doctor was full and I had a terrible rash all over my face and left hand. The other doctor who saw me was flippant and tried to blow me off. I didn’t blow a gasket but I think I was so overwhelmed by the rash, which I had had for 6 days, the Lyme crap, and the doctor’s attitude, I just couldn’t handle it.And as Lyme patients, we have WAY more than enough to try and handle. And it isn’t a lot to expect them to at least just take a minute and look over our charts, listen to us, and check us out. You are right though. We have to stand up for ourselves if we feel we are getting less than great care.

    Like

    • I’ve calmed down but if our trip next month doesn’t go as I want. Time to find a new doctor or just forget it. I’m so tired of being tired and sick and spending 10 years helping my grandparents.I’m 53 in a couple of days and have know idea who I am. I’ve given myself freely and would never miss the chance to say goodbye. I quit working in 1995 when granny had had two serious strokes.I told David when I’m well, I’m taking off for a month to hit the best spas. I haven’t had my hair cut in so long I resulted to a solders she. I do feel so symptoms of my depression coming on, not situation depression. I won’t tell any one because I want to get well and 2-3 weeks in a mental hospital won’t help.
      Take care.
      🙂
      M

      Liked by 1 person

      • At one time it was difficult to feel emotion or speak out since you never know what you would get in return.I’ve has great people in my life who showed me living bitter and inside my head was unhealthy. Luckily I listened, The nuns had a great deal to help me. It is still not resolved. I started having checst pain over this and said you have to take care of. The are have an excellent reputation all ofcer the world, it was a PA that was nit mine.I don’t know what’s next but I won’t give up.
        On another topic, do you know Spanish? Do you have some Spanish friends? I ask because I don’t think they know where to get information available in Spanish from our government. I was reading paperwork in a doctor’s office and the lack of controls surprised me. I thought About starting a menu explaining what departments you can go to and get info info is Spanish…..lots of topics, FDA, more importantly employers have the right to check you medical records and not hire on your history. I think it’s illegal and discrimination. I’m not sure they know. So little is spelled out in Spanish. It’s going to take a great deal of time and honestly not sure the value to readers. I think I’ll run a Poll to see what feedback I get. If you have any ideas I’m all ears.
        Take care and talk to you soon.
        “)
        M

        Liked by 1 person

      • That would be really helpful to so many, M. 💘 Yes, I do know Spanish, it was my college major, and I certified to teach it. Hope that chest pain gets resolved. Take care of yourself, M.

        Like

      • Thank you ! I felt like there was a need but Iwas guessing. I’m starting with the most critical information to know, how to use the FDA and other resources Show them Medwatch where all recall or label change information is. I have a complete list of government department and what they do but feel that’s overboard. After the more complicated info I wanted to move to different issues like underserved early education and who knows from there since I don’t speak the language or know what’s important. I just thout about Osha, and the for reason/ no reason to fire. Any Thoughts. I’m chaging my site up to have more resources. Do you know if hispanic children are prone to be born/or get later any ideas? I have a ton to read. If I’m going to do it, I want to be a respected viable sources. The WP Translator looks like crap? I haveen’t installed yet.
        Thanks a million, I’ll listen all day to any feedback you have.
        Hugs
        M

        Liked by 1 person

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