Thursday, January 23, 2014

Chronic Health Helpers

I'm always on the look out for things that will make my life easier, so I figured I would share my current favorites. Some of what helps me can be beneficial even if you don't have chronic health issues.

1) Be organized. Interpret this as you will. For me, this means carrying a little card that lists all of my medications and dosages in my wallet, and I recently copied it on to my phone (you would not believe how many offices just take the card). If you have a lot of medications, it is significantly easier to carry a small card than all of your medications. Plus, you would not believe how many medical professionals (mostly nurses) actually thank me for carrying this (my husband is a nurse, and he says it is completely usual for a patient to say, "Oh, I take that small blue pill. I think it's for my legs.. or headaches..."). I also keep all of my doctor appointments (and work schedule, husband's work schedule, birthdays, etc) in a planner. It may be overkill that in my house we keep a planner in our kitchen with all of that stuff in it. It's centrally located, and carries everything in it. I typically tape my doctor appointment business cards into the planner.

2) Have a pill case. It took a while for me to find a pill case that I liked. I only have two compartments a day, but the days split apart (fantastic for trips, or just an overnight). I use Apex's pill case, and my husband has the smaller version for his vitamins and one medication.I bought mine at, but have seen them at drugstores near me. This helps me not double dose, as well as having my meds at hand ahead of time is so helpful - think of a day when you're exhausted. Now you don't have to open all of your pill cases, because it's right there.

3) Take time for yourself. You need to relax a bit each day. It doesn't need to be several hours, but do something for yourself. I'm a fan of books, so I love to take some time at the end of the day to read and indulge that habit. I'm also a fan of baths, so I have a collection of bath bombs and the like - I love grabbing a cup of hot tea, a book or trashy magazine, and soaking for a bit. Sometimes I skip the reading material and just let my mind go.

4) It's okay to ask for help. I'll admit that I'm terrible at this, but getting better. I hate bugging people, and I often try to pretend like I'm physically okay. I've learned who I can rely on, and for what - so for example, I have a friend who is not great for talking on the phone but will hop over to my place on short notice. She's great for just having someone to talk to at home over a cup of tea or if I need a ride somewhere. 

5) Don't try to be Superman/Superwoman. Related to the previous "helper" - don't feel like you have to do it all or have everything be perfect. I spent so much time either trying to do it all and then ending up sick or feeling awful because I couldn't do everything I wanted. I have settled (and I don't think of settling as always a bad thing). Sometimes I need to prioritize both what I want to do and what needs done - and then think about my limits. This means that sometimes I don't vacuum my living room as much as I'd like, but if vacuuming meant I'd end up incredibly sore and out of "spoons", then so be it. (related: if you aren't familiar with the "Spoon Theory" by Christine Miserandino, definitely check it out). Find out your limits, and do not push yourself if you don't have to. Sometimes for me this means I have to change plans (often last minute), for example instead of going for a walk or shopping, I may do better just getting food or sitting around my living room chatting. Luckily, I have some really great friends and family who get this, which leads to...

6) Surround yourself with positive, supportive people. Shouldn't this be a given for everyone out there? I don't mean only be friends with peppy, upbeat people (well, do that if you want) - but surround yourself with people who support you. Obviously, some people are closer and more supportive than others, but that's okay. I have some family members who I do not consider myself close to because I just feel terrible after I spend time with them - why should I go out of my way to spend time with people like that? Honestly, I was afraid for a long time that my friends would not be there for me if I needed them, but it turns out that I have some amazing, wonderful friends (if you're reading: you're also all very intelligent, attractive, and funny).

7) Find out what there is out there that can help you adapt. For me, this means that we have a plastic can opener under one of our cabinets because I have a difficult time opening many containers. I also am a huge fan of GPS apps (I love Waze!) - I have brain fog often, so sometimes I just get a little forgetful and driving directions are incredibly helpful. I also utilize Post-It Notes (probably way too many).

8) Have a good medical team. I love (most of) my doctors. You need to have doctors that you can trust that you feel that they take your health seriously. If you have more than one doctor, you need doctors that communicate with each other. My lupus support group suggests keeping all of your health care in one health system, but I disagree. My doctors are not all in one health system because quite frankly, I have two doctors that I would not trade for the world and they are in different health systems - I'm not trading either of them, and the do communicate quite well. 

When I had lousy health care and couldn't (or not without lots of money) see my rheumatologist for several months, I called him. I was literally in my car on a lunch break crying and he called in medication because the other health system had me on a wait list (of several months). I had the "new" doctor telling me that I didn't take my health seriously (are you kidding me??!??!) and my lupus was flaring... and they'd see me in a few months. I called my old doctor (crying) with my lab results, and gave them verbally. The person I spoke to on the phone chatted with me, calmed me down, and assured me she would get the info to him and if I needed to be seen, they would work with me. When I left work, the woman I spoke to had left me a very kind message, telling me what to do and that medicine was called in to my pharmacy. I cried on my ride home - not because I was scared and overwhelmed but out of a sense of relief. 

Also know that you CAN fire doctors and medical professionals (to a limit). I was once in the hospital and did not like my nurse - now, please know I am married to a nurse, so I know what they deal with and I do try really hard to be a decent patient and understanding (okay, I'll be honest, I do not have much patience when I'm hurting). So I'm in the hospital, and this nurse is treating me lousy. She wasn't abusing me, but she was rude and she forgot one of my medications and said she gave it to me (but she did not). I also think it is ridiculous to be ready for pain medication, ask for it, and wait over an hour. I get that they're busy, but that sucked. Couldn't another nurse have brought me my medication? Well, only if the nurse had told them I needed it (no one knew). Turns out, this particular nurse had several complaints on her record. I politely asked for the charge nurse and requested a new nurse. Most hospitals also have an advocate, who I also spoke to. You don't have to do all that, but just know if you don't jive with someone, you can ask for another person. Think of it this way. If you went out to eat and ordered some ravioli. You're excited, you're a huge carb freak and love cheese, and are excited that they said they'd put vodka sauce on it. You're practically drooling because this is just what your stomach is craving. Then they put down fettuccine alfredo. Not the same. You can send it back and ask for what you originally wanted, or not say anything and quietly eat the food. It might still be good or it may be rubbery gross pasta so you don't even eat a few bites. 

Do you have any other "helpers"? Maybe I'll add some more later, but these are the things that have been the most helpful for me.

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