The importance of organization & reviewing your medical records…

I can’t stress enough how important it’s been for me to keep all of my medical and financial records in order. Since the start of my journey in November of 2013, I had an insane amount of paper work to keep track of. Even the educational materials I received in the form of books and pamphlets were starting to accumulate.

I immediately decided at that point to come up with a system that would not only keep my information organized, but also make it easy to travel with. A binder was the easiest way for me to achieve that kind of organization and portability. The educational materials however, I left in a designated spot at home.

I kept my binder pretty basic, so that anyone that had to access it could clearly understand my method. To start, each doctor was labeled and separated with a divider. On each section, I printed the physicians contact information. This made it easy for me to share this with any other doctor that needed it.

Now, the testing I had done could have easily been filed 2 different ways. I could separate it by location of the facility or, simply place the test results in with the physician who ordered it. I chose to place the results of each exam in accordance to the physician that requested it. Most of them were ordered by my primary doctor anyway, and I wanted to reduce the amount of dividers in my binder. Whatever method you choose, just be sure it’s the right one for you, and that it’s user friendly to the person that will be assisting you during your journey. They may need to reference it during a time you may not be feeling your best.

After a while, however, I had to keep the financial records aside because my original binder was starting to get to crowded. This was an easy binder to divide as well. I made a tab for radiology, doctors, pharmacy, hospital, Moffitt, and pathology. I also included a spiral notebook for me to keep monthly track of my expenses, as well as the mileage associated with anything medical. I highly recommend documenting these things, as it will make it easier to calculate later for your taxes. Now, you may opt to do it with a software program which is great. I just like having a hard copy of everything, just in case. This goes for medical records as well. A few people I’ve met have chosen to scan their records and keep them on a USB. That’s a great idea but, you may run into trouble if you come across a doctor who is unable to load the information into his system. Bottom line, I found keeping a hard copy to be much more effective.

My last piece of advice for today is simply a reminder. As a patient, I encourage you to exercise your right to request a copy of your medical records. Often times, your physician is able to give you a copy right after your visit. If not, most offices are happy to provide you with a copy by mail. Many doctors now even offer the option to access your chart online through your patient portal. Remember, an informed patient is a good patient. Too often patients assume doctors never make mistakes and that’s not true.

Doctors are human too, and though they don’t mean to, they can document something incorrectly or forget to document it at all. For example, you may have mentioned an allergy you now have to a medication, but while expressing that to your physician, you also mention another symptom you were having or the amazing vacation you just came back from. In the moment your doctor is intently listening to what you have to say, they could easily forget to go back and input that bit of information. I know it’s happened to me before in my own life when trying to multitask, so why would it be okay to assume it couldn’t happen to my physician. What is it that I’m trying to tell you? Review your medical records. It could prevent something terrible from happening later…

Stay tuned,
Elizabeth 🙂

 

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My thoughts on what I’ve learned along the way…

Writing and sharing my journey hasn’t been as easy as I thought it would be. It’s made me relive a lot of moments I’ve learned now I hadn’t dealt with. On the other hand, it’s allowed me to work through those emotions with all of you as my support system, and for that, I’m extremely grateful.

The truth is, no matter how severe it is, cancer is scary, period. I can’t tell you how many times I heard, “breast cancer is such a popular thing now a days and is so much easier to treat, you’ll be fine”. It’s true, there are many treatment options today, however, that doesn’t change the fact that cancer is frightening, and that there is no way of determining if treatment now will guarantee you won’t have it again in the future. Nevertheless, I found myself thinking those very thoughts and even repeating them in conversations with others. I had brainwashed myself to think that my journey wasn’t that big a deal.

If you are currently going through your own cancer journey, please know that you are entitled to feeling however it is that you are feeling. It may be sad, scared, angry, confused or all of the above, and hiding it from the world, or denying those feelings will only make it harder to deal with later. It will also make it hard for those around you to understand your needs. If you come across as though everything is perfect, people will do the same and not offer the assistance you may need. My experience showed me that it wasn’t others that didn’t understand my feelings, it was me that wasn’t being honest about what I expressed to them. Communication is key, and though it doesn’t mean you wont ever deal with a difficult situation, it will keep you from creating unnecessary road blocks along the way.

It doesn’t hurt to be forgiving either. If you do come across a person that has a nonchalant attitude regarding your situation, try not to get to worked up about it. Often times, the response comes from lack of knowledge or the inability to express themselves well. The news will come as a shock to them, and their first reaction may be to say the first positive thing that comes to mind. It may not be what you want to hear but, do your best to put yourself in their shoes and take that opportunity instead to educate them by sharing your experience.

One other very important thing is remembering to do your part. As a cancer patient, it’s easy for us to lose site of the struggles our loved ones are going through because we are thinking of our own. At times it even feels like we are going through the worse parts of the journey alone. Just remember though, fearing the loss of someone you love or watching them suffer is also hard on your loved ones. They too are confused and have no control of the situation. No matter how much they wish they could take your place or make it all better, they can’t, and that can be difficult to cope with. So be patient, communicate and just like they do their best to make things easier for you, try to plan a “time out” for them so that they too can be physically and emotionally balanced.

Lastly, I want to thank you all again for reading and continuing to follow my journey. I don’t have all the answers and still have more to learn but, I’m embracing the changes that come my way and looking forward to sharing them with you in hopes that someone out there will find it helpful… 🙂

Stay tuned,
Elizabeth 🙂

 

 

The importance of a good support system…

I thought I could handle it all. In fact, my main focus at the beginning of my journey was how I was going to balance having cancer with keeping a positive outlook around my loved ones. I didn’t want anyone to see me cry or to think I was weak and feeling bad for myself. It’s not that I didn’t accept this gift and find in it the opportunity for greatness. It was just that even though my mind was able to understand that logic, there was also the other side of me that was to proud to admit that I was in pain, confused, fearful and uncertain.

So many of the answers I had received still felt so vague. I didn’t know what my life would be like after surgery and what my treatments would consist of. There were still talks of other tests and possibly more surgeries after the one I was already scheduled for and it just made my mind wander. I researched as mush as I could and listed out the many scenarios but it got to a point that it all just consumed me. It was all I could think of and the things that once kept me sane were no longer apart of my daily routine. I was no longer running or training for any event. I thought to myself, “what’s the point of training when I don’t know what’s going to happen next?”

That was the second worse thing I could have done. Not only was I isolating myself while trying to build this image of strength, I was also keeping myself from doing the things I loved and that kept my mind and body balanced. With only a few days left before my surgery, I realized that I needed to embrace my support system. I had so many people who loved me and wanted to help in anyway they could. I needed to let them in and also learn to let go of that control I was still longing for. That’s one of the most important things my journey has taught me.

It’s okay to accept help from others. It is in no way a sign of weakness. Instead, it taught me to be humble. You can’t always go around life thinking you can handle everything it throws your way. Sometimes it requires assistance from those around you to get the job done. I reached out to my mom and partner for the most help but humbly accepted help from others as well.

From day one I kept everything in order. I had a copy of every test result, office visit, payment made, everything! I kept it all organized in a binder and to be honest, that too kept me sane. All of that organization was me still having a little control over a situation I had no control of. This was also a huge help to those closes to me. They would have all my contacts and appointments at the palm of their hand and the ability to answer any questions necessary without my needing to be there. I was letting them in and you know what? It felt amazing to know I could do that. To know I had such a strong support system backing me up and with me every step of the way…

Stay tuned,
Elizabeth 🙂

See you Monday for surgery! 🙂