3 ways the internet helped me cope

have you ever been to your pcp for a routine physical, had some blood work done or some other test, then received the results back from your doctor in jargon that you don't understand? generally the results are negative so you don't even need to know what the test was for. your hermatacrit is fine, your compliment levels are within range. "great see you in a year!"

when my symptoms returned after the birth of my daughter, i had to start going to my doctors more often. i went through tests after tests.  the results were read to me in doctor mumbo jumbo, lingo that i did not understand. i felt confused and very, very alone.

then something special happened. medicine and healthcare decided to embrace the internet! here are 3 wonderful ways the internet helped me learn about my disease and ultimately cope with my situation.

medical websites

two of my favorites are webmd and mayoclinic. check it out. go ahead. type in the flu or something. it will tell you whether you are at risk, what the symptoms are, how to get diagnosed, flu shots, etc. webmd even tells you how to cope with the flu.

so i research things about lupus and now ms all the time. if i have puffy eyelids i check a site to see if it may be a symptom of lupus or ms. if not then maybe i will call to discuss with my doctor but i check myself first. that's right, i'm in charge here!

once i was also diagnosed with ms, many different medications were on the table as options. all the options had side effects so i needed to be informed. these medical websites helped me with research.  i'm pretty sure if i was unable to do my own research i would have just gone ahead with what the doctor seemed most psyched about. but only i really knew the full complexity of my clinical history. after my research and after the doctors answered my questions, i decided on a different route.

patient portals

maybe 2 or 3 years ago the hospital i go to moved to an electronic system of delivering patient information. they call it a portal or gateway. i can log in and see all my upcoming appointments, doctor information, and test results. i get alerts via email when test results are in. additionally, i can contact my doctor through the portal in a sort of email type way.

essentially i can email my doctor!?! i don't have to go to see my doctor to discuss issues that arise. amazing!

the test results portion of my portal has been especially informative. not only do i get results to tests but i get to see the range the results should fall in. sometimes i might be in range but close to being out of range (which i think is important to know). also test results over time can help you see what your baseline is.

the portal i have has an amazing feature that i would like to mention. next to the data from each test result is an icon that allows you to find out more about the test and what it means. because of this feature i really know how lupus and ms are affecting me. knowing absolutely as much as you can about your disease and yourself helps you to discuss your treatment and care with your provider. i have found this so empowering. truly it has helped me regain my confidence, get back out there, and fight the good fight!

apps

they have apps in the field of medicine that can help with a scary diagnosis, help pin point medical issues, or help you chart your symptoms. there are a couple that i have become familiar with.

pain coach screen

the pain coach is an app i have used. it is created by webmd. you can track your levels of pain from unbearable to great. add which symptoms you are experiencing on individual days. you can add items you think are triggering or exacerbating your symptoms. over time you can see if there is a correlation or not. you can add what your treatments are. it's a great way to keep track of your medications too especially ones you have to take multiple times a day. i will tell you that it was this app that helped me pinpoint my nerve symptoms. ultimately this led to my ms diagnosis.

the multiple sclerosis self-care manager is another i have on my iPhone. i'll admit i don't use it as much as the other app i mentioned above but there are several great features. the self monitoring feature will help you keep track of weight, bp, and glucose. i can think of other "vitals" you could self monitor and track here but those are the ones listed. there is a place to keep track of lab results which i think is important if you don't have a portal (as mentioned above) for your information. there is also a place to list your medications as well as list which ones your are allergic to. the most important feature on this app i think, is the side effects log. it's important to be able to distinguish between symptoms of your disease and side effects of your medication or treatment.

if you are fighting a disease, you should be sure to use all the knowledge and information that is available to you. it will help you cope, move forward, and perhaps find new hope.

be strong - j