Just a regular day when you’re chronically sick

Or a day in one person’s #chroniclife. Or a typical day when you’re a professional patient. Or the opposite of a fun afternoon. Call it whatever sounds good I guess.

Left the house around 2:15 for a 3:00 appointment. Appointment is to have a very short in office procedure and see the doctor. Supposed to take about an hour total. Forced to valet because the first parking lot had at least four people circling that I saw, so there was probably more. The second parking lot was full. The third parking lot was at least a 10 minute walk and might have made me late so I was stuck going with valet which isn’t part of my routine because I like to sit in my car and have a snack before I leave. Grumble.

Check in at doctor’s office. Pay $300 between the copay and the procedure cost because my health insurance deductible isn’t satisfied yet. Wait 25 or so minutes in the waiting room. At least 20 minutes past my appointment time my name is called. Pro tip: If you have a doctor who seems to be always late, get the earliest appointment you can manage.

Medical assistant person does my vitals, tells me what to expect with procedure. (BP was good, yay!) Have problems with antibiotic and soap because of my allergies/possible reactions. Almost have a panic attack while I’m waiting for someone to come back into the exam room because I’m basically flashing back to the time an asshole doctor told me the diagnosis I clearly didn’t have, without talking to me. (He completely dismissed any of my symptoms and problems and excused me of not respecting him because I wanted to ask questions.) I didn’t want them to think I was trying to be difficult. When I realized I was near tears I recognized the panic and concentrated on breathing slowly for a minute or two. Thankfully that helped and I didn’t have to wait that long for someone to return.

Finally, 5 minute procedure is done. Get dressed. Wait for doctor to come back who, while I was there, talked to at least 2 other patients and made a phone call. I probably saw the doctor for about 15 minutes. 20 minutes absolute max. All my questions were answered and I was given a month of free samples of my med. This is a good doctor by the way. She actually called me “love” during my appointment. I have no idea if she typically runs late because it’s only the second time I’ve had an appointment with her.

Left the office, stopped at the restroom, and then left the building, ate a peanut butter cup, retrieved my car from valet ($4), and then set off home. Took about 35 minutes to get home. Traffic was lighter than I expected. On the way home I managed to miss every single gas station where I could stop to get water.  I was at the doctor longer than expected and so drank my liter bottle before I left the building. Should have bought a bottle of (overpriced) water at the gift shop. Ended up having “peanut butter cup mouth” all the way home. Home about 5:05. Soon as I got home I needed a snack before my blood sugar went any lower. The super simple procedure caused me enough pain that I’ll probably spend the rest of the evening on the couch – when I’m not doing chores. (Silly body, this pain is stupid.)

I have another doctor appointment on Thursday but it’s the chiropractor and he’s never been late.

Then on Friday I get my xolair shots and spend at least two hours at the infusion center.

Both appointments are a half an hour from home (one way).

I don’t have time to work.

Tips on How to go to the Doctor Part 2

This is a follow up. Anyways. Here’s part 1. This list is a little more in depth and possibly for people who go to the doctor more often and (probably) take more medicines than ‘normal’ or ‘average’. This list also covers points that I can almost guarantee will make your appointments less stressful.

11. When calling your doctor’s office: If you are making a new appointment, say something like this: “Hi, I am an existing patient and I would like to make an appointment.” If you have a question: “I am an existing patient and have a question (blah blah blah). Same goes for new doctors/being a new patient. “I would like to make a new patient appointment.” If you have a specific doctor in mind or see a doctor in a large practice, mention/ask for that doctor.

12. Keep a neat list of all of your medicines. By neat I mean everything is spelled correctly and it’s legible. It’s best if you can type and print out the list, but if that’s not an option, then hand write it. This includes everything you swallow, apply, and sometimes use. I would suggest a total of three to four lists.

  • prescription medicines you take daily – maintenance medicines
  • over the counter (OTC) medicines/supplements you take daily – again, maintenance
  • medicines you take/use as needed – this may or may not also need to be split into OTC and prescription

13. Keep a record of all your allergies. Drug, food, chemical, etc. Tell your doctor all of them. Let your pharmacy know. Artificial colors are especially tricksie hobbitses.

14. Keep a record of your health history. This is where comorbidity comes into play. People are kind of like soup. When you have different health problems then medicines might not work as the doctor expects. The more ingredients, the more complicated the soup’s flavor. Make this list as extensive as you need it to be. It’s also to help you remember. This sort of leads into number 15.

15. Keep a list of your doctors. This is probably more useful for your own sanity. My own list is doctor’s name, type of doctor, practice name (if relevant) and office phone number. I give the list with new patient paperwork but otherwise it helps me out.

16. You are allowed to ask questions. Ask questions. Keep your questions relevant to the appointment.  If you are seeing a doctor for specific acute symptoms, try to limit your conversation to just those problems/symptoms. For example, if you (think you) have a sinus infection, your sore elbow isn’t relevant.  This leads us to number 17.

17. If necessary have a list of questions or points you want to make sure are covered during the appointment. This helps you remember and could also help your anxiety. Make sure your questions are to the point. This is easier to say than it is to actually do, believe me, I know! Sometimes I give the tech./assistant/nurse the list of my questions and sometimes I keep it to refer to once the doctor shows up. It depends on the doctor and my comfort level.

18. Politely ask someone at the doctor’s office to make a copy of your information and ask to keep your original. They won’t have a problem. Printer ink is expensive!

19. Expect to review your current medications at every appointment. If you are not prompted for the information, then report all changes in your medication.

19. Remember that your doctors are a team and you are part of that team. Teams work best when everyone is working together towards the same common goal.

20. Optional: Have a copy of your latest lab results. You never know when you might want to refer to them. It also helps to know how long it’s been since the last time you had blood work.

21. It’s ok to be nervous and also remember doctors are people too. But get help if your fear or anxiety is interfering with your life and or your ability to go to the doctor. I used to get panic attacks driving to doctor appointments.  But now, for the most part, new patient appointments are a lot like the first day of school. I went through 18 years of school and every single semester I still had first day of school jitters up to my last semester of grad. school. It’s also okay to be afraid –like if you’ve had bad experiences with doctors but your fear shouldn’t be incapacitating. Maybe ask a friend or family member to go with you to the appointment, especially for new doctors.) Personally, I’m afraid of any new ER because of a horrible experience I had at an ER a few years ago. This trauma still affects me and makes me nervous at any ER visit. Also, I know multiple people who have PTSD because of experiences with medical professionals. If you cannot develop a relationship of trust with any doctor, it’s okay to let that doctor go but, remember, get help for your anxiety and fear if it’s interfering with your ability to even make appointments to go to the doctor.

If you apply any of these points to your doctor appointments then your appointments should be less stressful and less traumatic. Doing these things should help you to feel more in control at your doctor appointments and this helps anxiety.

Control

I don’t have a job and cannot have much income at all for the next three years if I want my mountain of student loans to be discharged for disability. I’m not able to fill my days with volunteering since I’m not working because I do not have the physical or mental energy I once had a few years ago. I also have to be aware of what/who I’m in contact with. If I get sick from a sick person, I could be sick for a very long time.

I have to plan out a lot of my activities – usually everything outside of the house – so that I still have energy for anything afterward. There is very little safe and healthy for me to eat outside of food that has been prepared at home. The one thing I know I can get from any convenience store that is safe for me is potato chips…. except right now while this acid reflux is really bad. My diet is very restricted and there are few food or drink “indulgences” that I get to partake in. In the morning, I usually eat so I can take my medicine, not because I’m hungry.

A few weeks ago I received my (first) denial letter for my SSDI application. (Apparently the DoE can discharge over $110,000 in student loan debt easier than Social Security can give out monthly checks.)

I knit, peruse the internet, or play ithing games, almost every day. I feed the cats. I remember my regular meals but sometimes forget to eat in between those times. I have problems with anxiety and depression, in part because of my health problems and in part because of all the bad experiences I’ve had in medical settings….and in part because I feel like I have very little control. On bad days I do little more than stare at my ithing, watch Netflix, eat and nap. On good days I can handle computer games and more than one or two household chores. Sometimes it’ll be two weeks before I leave the house besides for the grocery store or a doctor appointment. Going to the movies is really hard on my body and brain because of sitting still for so long and mentally processing everything from the movie. I think that must be why I like re-watching movies/tv shows.

When I was a grad student I wanted to make my life into something meaningful. I wanted to be able to help people by working in a non-profit organization. I can’t do that. It’s not possible. Someone/something/the universe/the fates/a higher power/my genes took that away from me. What I live now doesn’t feel very meaningful.

Somehow I need to find a way to focus on the little things I do have control over and one big thing I do have control. I choose to continue to fight to the dark thoughts that tell me it would be easier just to give up and stop it all. Except, that living shouldn’t be a battle.

Writing and Chronic Illness

I have this thing floating around in the back of my head. I’m trying to figure it out and give it some flesh and blood. What if fibromyalgia is what happens in my life that means I finally take the steps to become a full time writer? (Thankfully I have a supportive spouse in this equation.)

It’s weird because while wondering if my chronic illness is going to make it easier for me to change my life I’m also afraid my chronic illness has trapped me and I won’t be able to change my life.

The trick, I think, is to find a place to start. I’ve realized that writing is like mental exercise. I’ve started exercising at 10 minutes every day or every few days. We’ll play it by ear. I can do the same thing with my writing. To start. Blog posts don’t necessarily count.

I also recently read on the internet that on days you cannot write, you read about writing, or think about writing. I’m hoping this book will help too.

In theory, if the CoQ10 I’m now on seems to be helping my fibro fog. Exercise will also help. So, I just have to think about this like it’s a journey. You have to start someplace.