Doctor appointments seem to come in waves, either all at once or in the same week or a few weeks off. As a new patient for any doctor their appointment time scheduled is usually longer like 30-45 minutes, on regular visits an appointment may only be 10-15 minutes or less. Find a doctor near you, I find my drive or commute is less than my time with a doctor. Today, doctor offices have doctors, nurse practitioners (NP), Register Nurses (RN), LPN’s which are licensed Practical Nurses and Medical Assistance. Each person has different job with education to back up the initials. We are just going address the Doctor and Nurse Practitioners for now. A doctor usually known as a M. D., Medical Doctor is who you will most likely see. They will or should be a rheumatologist, a MD specializing in auto-immune diseases. Depending on size of office they may have a NP, Nurse Practitioner, a NP is equally skilled and knowledgeable as the MD and is easier to get an appoint with in most cases. In my Rheumatologist office I see a NP and she does inform the MD, doctor, of any changes and general health. Both rotate every few months so in a year I end up seeing the doctor at least 2 x or so a year.
Finding a doctor can be a huge research effort, I find it’s easier to find a specialist through my insurance and my general practitioner. I am usually pleased with who I am referred too. Its great when you can connect with other lupus patients locally and they can give suggestions. Some towns/areas do have local support groups. I led a support group in my town where I live now and invited many doctors to come speak so that volunteer experience prepared me and enabled me to meet first hand specialist within Lupus. A personal example just happened recently, during my rheumatologist appointment I told them I wanted to see a spine specials due to some pain and I felt a lump. I expressed wanting to see someone who could help non-invasively which would be no surgery. I found out a couple years ago I a have adult on set scoliosis. So my NP let me know she would be checking with the doctor and would let me know through the portal. Well, when I got the message I knew the doctors through others I have met in the community and knew he was not highly recommended so I went back to the NP and we have decided on another specialist. My advice is get to know your community specialists, check the doctors reviews, and most importantly use your instincts. Lupus effects the whole body and all it’s parts so many specialized doctors are needed and utilized for beneficial living with lupus.
How to Prepare for a Doctor Appointment
Yes, you have to prepare because you only have so much time allotted for your visit. Now most respectable doctors will spend more time but you never know so being prepared helps you address all issues you have. On your first visit to any doctor office they will give you a couple pages to fill out on your health history, medication, allergies, any surgeries and insurance. Yes, it is time consuming, and you need to get to your appointment at least 10 minutes early to fill out the exhausting forms. Some offices have them on their websites, and you can print and bring with you or some you can fill out and send back. Regardless of your preparation and already filled out form they will want to copy your insurance card and your license. So bring your insurance card and license for starters. I have an iphone which has an app already installed in called, Health, it’s a white square with a red heart. Pressing on it brings you summary, you will see your picture (how it got there I have no idea), just press on picture. You should see a Medical ID, press on that which you can fill in information as asked. Medical Conditions, Allergies and reactions, medications, blood type, height, weight, etc.. . If you don’t have an iphone, just type up or write up your medications and allergies most of the other stuff you will remember. We will talk about medications later but when you prepare to go to doctor and have your list be sure to include name of drug, how often you take it and the dose usually milligrams. They will ask! The Heart app is good for EMT’s to access if you are unresponsive and if you can’t remember!
Many Lupus warriors keep a health journal they write down how they feel, what it looks like , what activity they were doing or what they ate. All this can be important. I am not that detailed oriented, I use my note page in phone, write down whatever is happening and may take a picture on my phone for reference. Lupus is unpredictable, Lupus can change in a moment, hopefully its not the case with you and may not ever happen to you, most are not as lucky. Preparing your questions before an appointment is a wonderful practice to keep your appointment on track and so you don’t forget anything you were hoping ask. When I was first diagnosed many years ago, I kept a pad of paper in my night stand but usually when I was trying to sleep or sleeping I would think of something I wanted answers too or a question. I could just write it down and make sure I take the paper with me to the appointment. Now I use my notes in my phone. I date the question. You could even just sit quietly a day before visit to prepare you list. My sister helps me remember too.
Okay you are prepared for that doctor visit you may have someone going with you! It’s a week or a couple days before and they cancel. Or you have called, and no one is taking new patients, or they are scheduled out and first appointment for you is in 6 months. Holy cow now what do you do! After you simmer down, call back ask them if the NP is available and if not, ask if you could be on the wait list. As we discussed lupus is unpredictable so a person with an appointment might be in flare and must cancel or whatever. I call 2 x’s a week until I get a wait spot! Try it! I think they just want me to stop calling. Another technique I have used successfully, I have left a message for my doctor with what is going on and have been fit in sometimes the next day and sometimes in a month. Try it! The worse they can say is NO! When you call to speak with your doctor give them details not just my hand hurts. Let them know my right-hand hurts, it’s swollen, and I can barely move my fingers and I can not pick anything up! They may see a red flag in your communication and realize you are allergic to the cream they just gave you or you have an infection, or your description may just show you are in flare. If they haven’t seen, you in a while they may want to see you. Your doctor may want to check out your hand before your next visit. Not everything is an emergency and unfortunately you will learn this by this thing call life. Another tidbit about appointments, if you have to wait, it is very inconvenient and seems so senseless to us but that doctor has a reason and the person at the desk can’t help you and feels just as bad as you so be nice. I always feel it they are running late they will spend that extra time with me too! If the time is at the hour mark and you have another appointment of some kind just reschedule. Getting angry and mean uses to much energy. Try not to schedule appoints to close together, relive as much stress as you can.
The insurance game ugh! Trying to get tests approved so you can schedule what you need should not be frustrating but at times it is. Once my doctors office has put in the referral to my insurance, I wait 2 days, then I call. I call insurance and ask them to expedite my approval. I also call the office where the test will take place and schedule a date for the test. Some testing offices take time to get into. The tests are MRI’s, CAT scans, and not telling what else. One time I called insurance and the code for the treatment was not correct so I called by dr office and told them to resubmit with correct code. Unfortunately, all are human and mistakes can be made. In the computer age, this issues are usually a quick fix. Know your insurance and copays, out of pocket maximums and what providers are in your network. I like to look up doctors before I’m referred to them or if I’m new to the area I let my doctor help out. Usually your doctor had good referrals.
All the different medication are confusing, and no one can pronounce the names so just do your best! With practice you will become quite proficient in Medication jargon. When I was diagnosed 40 years ago, not many medications where out for Lupus. Many of the drugs I was put on came from other fields. Examples: Plaquenil is for malaria and has been used for Lupus for many years. Prednisone was the first medication FDA approved for Lupus. Now we have many more drugs that have less side effects and do wonders! I never thought I’d see it in my lifetime! Keep your hope, research is on an all-time fast momentum, and I hope it stays that way until there is a cure! Once you have been prescribed a medication you will go to pharmacy to pick up your drug. Use the same pharmacy for everything. Your pharmacy needs to be consistent, so no medications react to each other. It’s important your pharmacy knows everything you are taking. It’s a safe to have a few sets of eyes on your medications, your doctor may miss and interaction. Now what do you do if you go to pick up your prescription and it’s ridiculously priced. First thing you do is ask for generic, next thing to do is look at GoodRX, lastly, find out who makes drug. The drug company may have a copay card. I find most have some kind of copay card. Calling your doctor and telling them it is out of your price range they may be able to prescribe a drug that is cheaper but does same thing. You would be surprised.
I have several mediation allergies, so I keep a list of them handy for my medical team and pharmacy. It may take me a few tries to get the medication that I can take, try not to get discouraged. Having Lupus for 40 years, I’ve learned to keep a list of what I can take too. I have noticed that most people with Lupus are allergic to sulfa drugs. Keep Benadryl at your house for allergic reactions.
