There are times I'm hopeful, optomistic, excited and other times an utter panic and fear runs through me. I have no idea what this doctor is going to tell me.
Major anxiety, OCD, intrusive thoughts, worry of something going wrong, and crushing exhaustion is CONSTANT. My memory loss, confusion and "word finding" isn't getting any better.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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"God is light. In Him there is no darkness." 1John 1:5 Posts: 10177 | From Illinois | Registered: Aug 2004
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
It'll be OK Mountainsky.
One thing I remind myself of quite often is that it's OK to be anxious, not feel well, struggle with pain, sadness or exhaustion from insomnia.
I look back at how very, very sick I was and am proud of myself for surviving and functioning. Might not be 100% but better than before treatment.
I'm rooting for you and also praying!
You can do it!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I LOVE meeting new Providers.
At at the beginning of my illness, I was scared, anxious, couldn’t wait until the appointment over. Not now.
I use my appointment with a new provider like a job interview. Not what I can offer to their practice, but what THEY can offer to my wellness.
I’m am prepared, a stream-lined presentation (a habit I installed due to main-streamed docs time constraints), list of tests performed with results, list of ALL providers seen, list of all diagnosis’s, all medical procedures preformed, medication list, symptoms list, I even print out a graph of the trends of my blood tests for the past year.
I also write down questions I WANT answers to. I bring a journal and WRITE down everything SPOKEN. I wish I could record the appointment on the down low, lol.
While your appointment will concentrate on TBI’s, the body as a whole is so important as this Infection is a multi-systematic infiltrate. All body systems must be addressed.
You will handle your appointment with grace and dignity. You are intelligent, caring and INCREDIBLY brave. You will be fine. 💚
The ability to finally get answers and solutions from an experienced LLMD is the BEST a feeling ever !!!!!
While it might be a lengthy appointment, it will go by fast, and become a thing of the past, with your concentration becoming geared to moving forward and getting your life back.
We are all rooting for you and offer support every step of the way. You GOT this !!!!!!!!!!
Posts: 3217 | From Florida | Registered: Nov 2016
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posted
I am concerned what they are gonna say. Ive had so much hope with every appt with my now former llmd only for every protocol not work.
I'm worried this is gonna really be $$$ (this new doc is alot more than my former, I expected this though) or the meds she gives me will make me very sick I won't be able to work. I don't have alot of earned sick or vacation time.
You'd think as the date gets closer I'd be relieved and excited, I'm getting more scared.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Hang in there!
Bartender Bonnie's suggestions are great. I always try to keep my questions to about 5 - doctors have a time limit - and then ask "are there any more things I should have asked you about?"
Remember this is your interview of the doctor. Look them up on line so you know their education, training, background and what ins. they accept.
Be sure you have a list of your meds and allergies andwhat you do not react well to. Prescription and over the counter ones.
I have a sheet that I update for every doc appt, etc. Which has everything needed. I think I posted a template here once.
Anyway, remember you are in charge. Keep telling yourself that when worries and anxiety arise.
-------------------- Ann-OH Posts: 1746 | From Ohio | Registered: Aug 2014
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posted
Also I have notes for this appt. I will be typing them up this weekend so it looks better organized and cleaner.
I'll have things color coded and bolded. I got the idea with color coded key words and questions as a way to discuss my past history, red, yellow and green. If it seems odd or silly oh well. Red are my most bothersome symptoms and the most debilitating, things that got worse with treatment, my fears etc I guess. Does that make sense? Yellow as in things I am unsure about, mild to moderate symptoms that come and go. And green ( lol well if I have any) symptoms that went away. Maybe my hopes of what I want to achieve while under their care?
I'll make a copy of these notes for this doctor that they can keep in my record and have on hand for themselves. As well I'll have a list of every medication and supplement I've been on as well as past test results. I have yet to receive my records from my former LLMD yet.
2 hours seems too short to be honest. Hope they are prepared for me
Posts: 597 | From Massachusetts | Registered: Mar 2019
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
I found it! Nurses love this! They don't have to ask tons of questions, you don't have to remember all the answers, and it takes lots less time. They can copy this one-page info sheet every time and keep it in your records. Print headings in bold for easier read
Your Name address phone # date of birth Spouse or significant other + phone number
Emergency contacts + phone numbers – include all people you want be contacted
Today’s date:
Current medications: (as of current date) Prescription
Non-prescription (over the counter, plus herbs and vitamins)
Immunizations (tetanus, flu, etc.)
Allergy to medications I have shown negative reactions to the following medications: List medication, date, and your specific bad reaction to each.
Recent procedures (mammogram, colonoscopy,flu shots etc.). – name and date of each,
Surgeries
Recent Medical Problems: Include problem and date of onset to date cured, or to current date and what remedy was used. (example: back injury, and any other things that you have had to deal with over your medical life
Primary Physician: Name, Phone & Fax numbers
Specialists: (such as cardiologist, dentist chiropractor etc.) names with phone and fax numbers
Primary Insurance: name and ID number Secondary Insurance: Name and ID number
Power of Attorney: name and phone number Living Will: (how to get that info)
-------------------- Ann-OH Posts: 1746 | From Ohio | Registered: Aug 2014
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Nice Ann.
Also please try not to get discouraged in things that don’t go exactly as you had planned. Lots of variables in your wellness journey. Pick your battles wisely. (Are you better with them, or without them).
After my primary of 20 years dismissed me from his practice, I got a new primary, who was smart enough to test basic immune panels. He suggested I needed an Immunologist.
I wanted the best Immunologist, as I believe your immune system is a BIG part in who gets well and who doesn’t. I researched and found THE Immunologist who brought Claritin (antihistamine) to market. Claritin is a great product. I thought I hit pay dirt!
I printed out the LATEST published research on how Claritin could eradicate Lyme. Couldn’t wait to hear his reaction.
He quickly dismissed it, never got past the first paragraph. Oh well.
He’s the one who diagnosed me with CVID. He’s the one who orders my month IVIG infusions. Better with him than without.
Posts: 3217 | From Florida | Registered: Nov 2016
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Being cautiously optimistic sadly. Been disappointed and heartbroken too many times in the past. Not expecting her to be a miracle worker. Keeping a neutral tone.
We'll see.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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I was originally going to take the day off from work but now no. This new LLMD is literally down the road from the hospital I work at ( maybe that's a good sign?). I'll go back to work after and whatever amount of hours I miss I'll make up staying late. I don't have much "Earned Time" and don't want to use alot up just for an appt. Who knows if I'll need it down the road if this LLMD wants to try a new abx and I get too sick to work at the beginning.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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