I feel like I have two jobs instead of just one. I am not the only one that feels like this, many people with chronic illness and pain deal with this. I love my real job and that is the job I love to do. My “other job” is being a patient to all these doctors. I don’t enjoy that job at all. I used to really only go to the doctor for once a year checkups and the occasional visit for being sick. Now I have some type of doctor appointment usually at least once a month. This summer there was about a 5 week period where I didn’t have any doctor appointment and it was amazing! I finally had a break – but not really! I didn’t have appointments in that time but about once a week, sometimes more, I have to do something. Sometimes I have to refill prescriptions and that can be a process if that doctor is out, or insurance doesn’t want to be helpful. I have to schedule appointments, and message or call doctors if there is an issue with my health. I have to go to a doctor if my cold won’t go away to make sure it doesn’t turn into an infection because my immune system is not as strong, or I have to visit if I have a new symptom that needs to be checked out. It gets overwhelming sometimes to have to manage all of that and I never really get a break. Sometimes when my depression is bad I will try to take a break from managing all that stuff but I have learned that doesn’t help and ends up making me more stressed. Being a patient sometimes really does feel like a job. You have to be prepared by making sure you have any new symptoms written down or some symptoms need to be dated so they can see the time period. It has to be written down because my brain fog (which I will talk about in a later blog) likes to really prevent me from remembering that stuff. You have to fill out paperwork and update things and bring the nurses and doctors all up to speed. Doctor appointments are one of the things that wear me out the most. I normally have to take a half day or whole day, definitely whole day off if it’s with my rheumatologist because after the appointment I am so fatigued and in so much pain I just want to go home and lay down. The pain is from having to get joints and muscles checked and touched which means lots of pain! I am not sure what it is about the other doctor appointments but I get so worn out and I don’t really want to do anything the rest of the day besides go home. I have gotten to know my doctors all pretty well and they know me pretty well now which isn’t really something that is good because that means I go to the doctor a lot. When you have to go the doctor a lot you start to know the office staff, and the nurses, and the doctors. Which makes the appointments go a little bit better because you get little breaks from talking about your health. One of my doctors went to Iowa for their fellowship so we sometimes talk about the football team or basketball team which is a nice distraction. (I know Dad would have loved that and the fact that he went to Iowa). I guess when you and your doctor know you are going to be seeing each other a lot you may as well make some conversation. Being a “part-time” patient is a job I would love to stop someday but the reality of that probably isn’t going to happen and its probably going to be quite the opposite, in fact I will probably continue picking up more doctors along the way. The other reason I don’t like being a patient is you never leave with a “good” feeling – you don’t leave knowing you helped someone or finally accomplished a victory. Instead you leave with “you’re a unique case, we don’t know whats wrong with you, try this, rest more, don’t overdo it.”… the list goes on. In fact this year I had to cut down hours and days from my real job because my body couldn’t handle working 5 days and being a patient on top of that. So my doctors recommended that I cut my hours in half which is what happened. I am so thankful I can’t really put it into words that it worked for me to only work three days. I need this job so much! It is definitely one of the things that motivates me and keeps me going day after day. Its definitely one of the things “I wake up for”. This is a job I love because you aren’t left with disappointment. In fact at my real job I am left with happiness (I know it may sound cheesy but it’s true) I get to give and help in this job I love to do that. I am left with the feeling of maybe a small victory, or that I got to witness someone learning something for the first time, or passing a goal, and seeing my friends. Those are little things but to me they are huge. I feel good that I actually contributed to something and helped. I am not left with disappointment and no answers. I hope to be working as long as I can. So in a couple of weeks my appointments start picking up again and I will have at least one once a month from now until January. After every appointment I always wish to be “released” but we are always scheduling appointments.
*Just a little update I increased my medicine and I have noticed a difference in my mood. I’m not all the way there yet but I am doing a lot better then I was last month.
“Come to me, all of you who are weary and burdened and I will give you rest.” Matthew 11:28