Tips and Tricks from a Nurse-Turned-Autoimmune Disease Patient

Being a patient is never easy, but being a patient after having been a nurse has been a whole different reality. I never thought I would ever be on the other side of the bedrail, but since being diagnosed with this autoimmune disease, I've had to learn how to work my way around the health system from a very different view.

It has been a hard road, but my nursing background has enabled me to note some insights that have helped me thus far: first in organizing my own care, and secondly in the process of self-advocacy. What follows are a few tips and tricks that might make life a little easier for those living with a chronic illness or repeated hospitalizations.

1. Bring Your Comfort Items from Home with You to the Hospital

The hospitals are cold and uncaring, but a few personal items can be a real lifesaver. Take your favorite blanket in, your favorite pillow, or even your favorite socks to make you comfortable amidst an otherwise cold clinical setting. Many hospitals will allow small items that make the patients feel a little more at home, and it adds much to helping one feel relaxed during a hospital stay.

Nurse Tip: If your room is too warm, ask for a small fan and/or bring one from home. A small fan can help keep you comfortable and mask some of the hospital noise that wakes you up at night.

2. Keep a Medical Journal

The things I used to do as a nurse for patients—charting symptoms, medication changes, and treatment responses—I now do for myself. Keep a medical journal where you write down what your symptoms are, all of your medications and the dosages you take, test results, and how your feelings change from week to week. This allows you to tell what is happening with your health practitioners and prevents you from forgetting to discuss something that is important during an appointment. Love the BeWell IBD Journal because stool tracking is very important for everyone!

Nurse Tip: Before you go, write down questions for your doctor and that will help you remember what to ask when brain fog sets in.

3. Coping with Lab Work Days

One of the frequent features of life with autoimmune diseases is blood draws and lab work. Here is how to make it at least somewhat easier to tolerate:

• Hydrate yourself: Drinking plenty of water before going for blood withdrawal can help bring out the veins and hence be more accessible. Ensure that you drink a few more glasses of water the day before and in the morning when going for the appointment.
• Warm up the arm: Wrap a warm compress on the arm from where the drawing is to be done. This will increase the blood flow inside your body, hence making the veins visible and more accessible for drawing blood. You could also invest in the BeWell IV Apparel.
• Small needle request: If you have particularly small or hard-to-hit veins, you may want to ask the phlebotomist if they can use a butterfly needle, which is much smaller in size. Sometimes this reduces pain and can make the whole process significantly easier.

Nurse Tip: If you are very anxious or become lightheaded during blood draws, employ the use of distraction techniques: look at your phone, listen to music, or deep breathe.

4. Starting an IV

IVs are finicky, and for those with autoimmune conditions, veins can be less willing to cooperate. Here's how to enhance your IV experience:

• Hydrate Well: Just like with lab work, if you drink a lot of water pre-IV, it will go a long way toward making your veins much easier to access.
• Warm Pack Request: Request a warm pack be wrapped on your arm for some time before the commencement of the IV. The purpose it serves is to dilate the veins, hence making them easy to access.
• Have an old familiar site: If you have a vein that works well for you, make sure to let the nurse know. Sometimes just being open about your preference increases your success with IVs. 
• Ask for the IV team: If your nurse is having trouble, we may have a team that specializes in placing IVs.

Nurse Tip: If you have a history of difficult IV starts, request a "vein finder" device. It incorporates infrared light to assist in locating veins beneath your skin.

5. The Taste of Medical Drinks

Medical drinks—from contrast for tests to prep for a variety of procedures—are extremely disagreeable when it comes to flavor. Here's how you make it more tolerable:

• Use a Straw: While drinking through a straw, it minimizes the contact between your taste buds.
• Cold Drink: Cold drinks have less pronounced flavors. Refrigerate the medical drink before consuming it.
• Suck on a Lemon or Hard Candy: Immediately after drinking, suck on a lemon slice, hard candy, or a peppermint to mask the aftertaste of the drink.

Nurse Tip: Some find sucking on an ice cube before drinking has the effect of slightly numbing the taste buds so they do not really 'taste' the drink.

6. Prepare a Medication Bag

Many times, the management of autoimmune disease requires several medicines throughout the day. I recommend that you create what I call a "medication bag" that you can take with you everywhere you go. Inside of it, you should have a small pill organizer, all your "rescue" or emergency medicines, and a bottle of water. This will facilitate life when taking your medicines at work, doing your errands, or visiting your family.

Nurse Tip: Always have a duplicate set of medications elsewhere other than at home: in your car, purse, for those times when you may forget your medication bag at home.

7. Speak Up About Your Pain Management

Many of us with autoimmune diseases are no strangers to pain, and we do need to learn how to cope with it. Above all, don't be afraid to ask for stronger pain relief if what you are getting isn't working; it may be adjusting your medication, asking for a heating pad, or even asking for more pillows so you can reposition yourself in bed for better comfort.

Nurse Tip: For any pain you may experience at home, feel free to use a heating pad or warm compress and ice packs for inflammation. Just remember to put a barrier such as a towel between the object and your skin.

8. Make a "Hospital Go Bag"

Because it is one of those autoimmune diseases you can get pretty used to with spur-of-the-moment hospital visits, I highly recommend keeping a prepacked "go bag" by the door, stock full of essentials like toiletries, a change of clothes, phone chargers, snacks, and a list of current medications. It makes those emergency trips to the hospital less stressful, as well as having what you need on hand.

Nurse Tip: Let copies of your insurance information, and a list of emergency contacts be kept in your go bag. It saves oodles of time at the time of admission.

9. Ask for a Patient Representative

If you are at any time overwhelmed in the hospital, ask for an advocate for the patient. These individuals will help guide your care and answer your questions; in some cases, they act as mediators between you and the healthcare providers. They may prove to be quite invaluable in the attempt to make sense of patients' rights.

Nurse Tip: Always ask for help if you don’t understand something or feel like your concerns aren’t being addressed. Patient advocates are there to support you.

10. Listen to Your Body and Set Boundaries

It was important that as a nurse, I was always taught to push the pain to take care of others. As a patient, I learned that the key to life is to listen to my body. Rest when you need to, say "no" when you're not up to something, and lose the guilt. You know your body better than anyone, so stop letting someone else inside your head when it comes to setting boundaries that protect your health.

Nurse Tip: Plan rest days after doctor appointments, treatments, or procedures to allow yourself time to recover without additional stress.

Conclusion: From Nurse to Patient—Self-Advocacy

Living with autoimmune disease is overwhelming, but capitalizing on these "nurse hacks" empowers that sense of control over one's care. Let me remind you, the most important thing you can do as a patient is self-advocate. You deserve to be heard and treated respectfully with compassion.

These are some of the tips and tricks I learned through experience, and I hope these provide an easier avenue to get through this journey. Be it home or at the hospital, know that you have the power to make your voice heard, seek out the support, and do all you can to find ways to lighten the load from your chronic illness.