Tag Archives: lupus support

Being sick is expensive!

Since moving to Florida, it has been a major change in medical care for me. And to be honest, I am not as happy as my care here as I was in New York. In addition to not liking my new doctor very much ( this is a post in itself), I am having to pay a lot of money out of pocket.

I am all of a sudden paying close to 200 dollars for my infusions, plus a coinsurance. I suppose that’s a rather cheap price to pay considering how much the drug and the infusion costs, but seriously, that’s like a car payment every month. And that’s not my only med. Luckily, I do 90 day mail order on all the others and it saves me a ton.I think about about the fact that I’m not working and how a lot of other people who have chronic disease are not working and wonder ” how can they afford this?”.

I never changed my insurance. I’m still on the COBRA, because it was good insurance that would cover my Benlysta infusions. My husband had checked with insurance companies to get us insured, and when he had looked, he couldn’t find anything that was guaranteed to cover the infusions, so we just stuck with the insurance he had got from his last job. Apparently, I never paid anything before because I didn’t have to pay deductibles because it was the hospital-provided insurance.

This whole experience has brought up so much sadness in me. I’m reminded of my patients who are hard working people, who despite having   ” good” insurance still struggle to pay for expensive prescriptions. I think of my parents and the elderly on Medicare, and my hearts breaks. Older people who should be relaxing now, getting social security, but it’s not enough to cover their million prescriptions, so they still work. I think of those living with lupus and other diseases who can’t work, who already suffer enough, and then have to struggle to find the money to see their doctors. And I remember that awful feeling of prescribing a covered drug because it was cheaper, even though I knew it wasn’t the best choice.

I always like to have some optimism in my posts, so I’ll just hope that maybe things will change soon. Oh and keep me in your prayers please. I start a new job next week.

 

Apology

So first let me start with an apology. I know it’s been over a year since I posted, and I’ve been slow about replying to comments and emails, but hopefully that will change!

I hit a rough patch and stopped writing. I had a few flares that came at a time when I was really doing good, and that completely discouraged me. I became depressed and felt so upset about a lupus that I didn’t want to deal with it. I didn’t want to talk about it or read about it or post about it. I felt stupid for writing about it, believing that no one cared about my blog and it wasn’t really helping anyone.

But I’ve had a lot of change in my life and I am feeling more healthy and more optimistic. Thank you for your continued comments and emails that remind me that we all support each other and that there are people out there who understand, that none of us are alone in this battle.

I’ve had a  lot of change in the past few months. My husband finished fellowship and we moved to Florida to be close to family. I have a lot going on and a lot to share! Expect to see some new posts coming your way! And thank you again for your  continued sharing!

 

 

 

“Work is killing me.”

So I know it’s been awhile since I’ve posted. The other doctor in my office was out of town so I was covering for him and then I got sick last week and am still feeling pretty crappy.The weather went from a blazing eighty five degrees to a rainy, dreary seventy in just a day and I had patients coming in with coughs and colds and sore throats for a week.

A few days later I started feeling chills and general fatigue. I figured it was a viral upper respiratory infection and started taking vitamin C. I had an appointment with my rheumatologist, who ended up doing a throat culture and nasal swab. I didn’t think anything would come up positive and figured I’d be feeling better by the weekend.

Over the past weekend, I developed a horrible cough, and it got me thinking. The purpose of my lupus treatment is immunosuppression. I take Imuran, and my last white blood cell count was about 2. This makes me really susceptible to catching some nasty bug. I should be avoiding sick people but instead I’m surrounded by them all day. They cough and sneeze all over me. I look inside their mouths and noses while taking swabs and cultures.

I remember when I worked in the hospital during residency. Any time there was a suspected case of tuberculosis or meningitis in the ER, I was warned to steer clear. I couldn’t even go into the ER to see my patients who were there for noninfectious illness, because everyone who went into the ER was at risk of contracting the highly- contagious disease and had to be given prophylactic antibiotics.

I work in an outpatient office now, so the likelihood of having an extremely sick patient is not as common, but it’s still a risk. I could never work in a hospital again.I could wear a mask at work, but that would make my patients uncomfortable, and make my staff suspicious. After getting sick this last time, it made me wonder how at risk I am putting myself everyday.

My throat cultures came back positive for bacteria, most likely strep. I’ve started antibiotics, but I’ve been so short of breath that my doctor ordered a chest X-ray to rule out pneumonia. I should get my results back today, which hopefully will be negative. I’m still going to work this week because I don’t get any sick leave (doctors aren’t supposed to get sick) and I shouldn’t be contagious anymore. I’m exhausted and weak from coughing all night, but I still have to keep going.

I’m optimistic that I will get better soon, and I am going to take better precautions to prevent getting sick again but this gives new meaning to the phrase “Work is killing me.”

The Day of the Visit

We discussed how to be prepared for your doctor’s visit in my last post. Today I will discuss what to do on the day of.

First thing is try to be 15-20 mins early. They may need you to fill out new paperwork, or re-run insurance. I know every time I see my Rheumatologist I fill out a health questionnaire.

In the waiting room, find a way to pass the time. Bring a book or read a magazine, or what I like to do, play a game on the phone. I find doing this not only makes the wait time seem shorter but also helps decrease any anxiety I may be feeling about the appointment.

While your waiting in the exam room, take a minute to relax and clear your mind of other distractions. I know sometimes I go in and I am worried about something and work or home. I can’t focus on what my doctor is saying when I’ve got other things on my mind. Get your paperwork and notes ready. Think about what you want to say.

And most importantly, turn the phone on silent and put it away. As a patient and doctor, I find it to be a huge distraction. I will ask something and the phone rings and both of us I lose our train of thought. Plus, it’s simply rude. It gives the doctor the impression you don’t care when you are texting/checking emails/ playing games during your visit. I find they are not paying attention, and I have to repeat myself multiple times.Sometimes I’ve had patients answer their phone and start having full conversations while I’m waiting to finish interviewing/examining them. This is a patient’s special time with a doctor and it should be dedicated solely to determining the best plan of care.

During the visit, let the doctor guide the visit. When I see my doctor, I have my own questions and concerns I want to discuss but I usually wait til the end. I let her ask her questions first, because I know she is trained to gather the important information necessary to coming up with a good assessment and gameplan. Usually throughout the course of her interviewing me, I get my questions answered anyway.

Be honest with your doctor. I’ve had a lot of patients try to hide information because it’s embarrassing, or illegal, or simply cause they did’t feel it was important. Doctors keep everything confidential, and are not there to judge you personally. The more information we have, the more we can help.

Take notes. Write down things so you don’t forget once you get home. I don’t know about you, but somedays it’s a lot of info all at once. Also ask about getting any test result reports you need for your other docs.

Don’t be afraid to voice your questions or concerns. You are your best advocate. Also don’t be afraid to ask for something to be repeated or explained again. Sometimes us doctors talk to fast or accidentally use language that others are not familiar with. I usually ask my patients to repeat the plan back to me, to make sure they really understood what I said. I know I’ve misunderstood what my doctor has said to me a couple times.

I really believe that these doctors visits are really important. With the confusion of this disease, I feel like my doctor and the time I spend with her is what really gets me through. I know a lot of people hate going to the doctor, but I actually look forward to it. All in all, these tips should be useful in making your appointment go smoother.

Before the Visit

When I went to facilitate the lupus support group meeting, I gave a talk on how to make your office visit go smoother.  I gave several tips on how to be prepared before and during the visit, so that your time with the doctor is used most efficiently. I know it’s frustrating sometimes to only have fifteen minutes, and then at the end of it feel unsatisfied, because you didn’t get to ask all your questions and voice all your concerns. The participants found the topic useful, so I will share my advice with you over the next couple posts.

1) Choose a doctor you can be comfortable with. There are a lot of factors in choosing your doctor.Do you feel more comfortable with a male or female? Is there a culture or language barrier? Do you prefer someone more straight to the point, or someone you can talk casually to? Deciding upon a doctor is one of the most important parts in your lupus journey. They will be your guide and you need to be able to trust them and feel comfortable telling them personal information. If you’re not comfortable with your doctor, look into switching, maybe another doctor in the practice or a new office.

2) Give yourself time. Try not to book appointments within 3-4 hours of another appointment/meeting/errand. You never know if the doctor is running behind, or if there is an emergency, or if you will have to do tests or bloodwork after the appointment. I always advise one appointment per morning or afternoon session. I’ve had situations where my patients were rushing to pick up kids or go see another doctor and feeling rushed hindered me from being as thorough as I’d like, and the patient was so worried about the time that they couldn’t completely focus. Also, if you feel like you are going to have a lot of issues to discuss, ask for a longer appointment time, so that you have sufficient scheduled time. If your requiring some kind of form to be filled out, make sure your appointment is at least 2 weeks before the forms deadline.

3) Be prepared.
A) Write down any issues you had, preferably when they happen. Note what, where, when, surrounding circumstance, duration, intensity, other symptoms and how it went away. I know personally that sometimes I’ll have some joint pain or another symptom, but by the time I have my appointment I’ve forgotten about it so I don’t mention it to my doc. If I make not of it as it is happening, I can give my doctor an accurate description.
B) Write down all your meds. Read off the bottles and write the name, dose, and how often you take it. Write down not only the meds that doctor writes for you but all the meds, including the ones from the specialist. Also write down any supplements you may be taking. If it’s too hard to write, bring in all the bottles for review.
C) Bring in any reports or consults. Ask for copy of labs or radiology reports when you are at your other docs. Sometimes the info doesn’t move between doctors as quickly as we like. Also take notes at the appointments and write down any new diagnoses/treatments.

Hope this helps.In my next post, I will talk about ways to make the appointment day easier. It’s important to make the most of your doctor’s appointment.

Lupus meetings

A while back I had written about my first experience at a lupus meeting. At that time four years ago, I felt very disheartened and made a decision to never go to another lupus meeting. I wasn’t ready to face my disease and the changes that were about to take place in my life. I was scared and in complete denial. I felt like I was nothing like those sick people because in my mind, despite the pain and fatigue, I was still healthy.

It took about two years before I decided it was time to go to another lupus meeting. This wasn’t so much an educational or support group type of meeting, but a SLE Lupus Foundation  Young Leaders Board meeting for people to get involved with raising awareness and fundraising. I thought it would be a great opportunity to take the tragedy in my life and turn it into something positive. It was really exciting to see young women living with lupus like myself who were happy and able to maintain professional jobs and still have social lives. I wanted to be like them. I left the meeting wanting to come back, but with the demands of my job and the inconvenience of getting into the city, I never returned.

Then six months ago, I decided that since I was working part time, it would be a good time to get involved again. I emailed a contact that I had met at the Lupus Foundation meeting, and she hooked me up with someone from one of the lupus supports groups who invited me to come and facilitate a meeting and tell about my experience as a physician and lupus patient.

I was nervous about speaking in front of a group, wondering if my material would be relevant and relatable. It was a very small but diverse group of people, young and old, male and female, and family members who came to support. I immediately felt comfortable with these strangers. Everyone there was welcoming and supportive and eager to hear what I had to share. They asked questions and offered encouragement, and just gave me that general feeling of understanding and not being alone.

That lupus support group was one of the most positive experiences I’ve had and actually inspired me to start this blog. I definitely encourage everyone to go and be part of their local lupus family. Now that I’ve gotten settled in my new home, I look forward to getting involved with my local lupus community.

First day!

So yesterday I had my first day at the new job. It was a slow day, but still quite exhausting. Basically,  it was about getting all my paperwork in order and getting acquainted with the staff and environment. I only saw one patient, but it took awhile to finish because I was still trying to figure out the electronic medical record system.Despite the slow day, I still left work drained.

I had become comfortable with not working. My body was used to sleeping in, and being able to nap whenever I didn’t feel well. I had enough time to take care of my chores and errands and plenty of time for exercise and my other hobbies. I never really needed to plan anything out, since I just did whatever I needed to whenever I wanted.

After only one day of work, I’ve realized I am going to have to make some adjustments in my lifestyle to be able to maintain my health and minimize stress. First, I’m going to have to go to bed earlier, which means no more late night TV. I am also going to pay more attention to my diet and eat foods that will give me more energy during the day. I will plan out my chores and errands better, so that I can do little things on the days I work, and save bigger projects for my days off. I’ll need to switch up my exercise routines so that they days I work, I do a little less, and make up for it on my off day. I’ll also have to accept there’ll be days when I just won’t be able to work out at all.

I’m happy to be working again and know it will take time to get in my groove. I’ve never been one for change, but I’ve learned that sometimes it’s not such bad thing and with every change in my life comes new experiences. I look forward to my new job and hope to have new stories to share with you!

Inspiration from the Garden

So as many of you know, I’ve started a little garden in pots in my backyard. I have some thyme, dill, parsley, oregano, basil, and my favorite is the red chili pepper plant. Most of my plants had been doing OK, but the pepper plant always looked so sad. The leaves would just droop and wilt, and  look completely depressed.

After consulting google, I decided that maybe my plants just needed more water. So, I started watering more frequently, and soaking the soil. The herbs started growing and becoming more vibrant it color, and so did the pepper plant, but the next day the leaves on the pepper plant would start to sag again.

Then my parents came to visit me at my new place, and let me tell you, my father is a skilled gardener. He has all sorts of veggies in the garden as well as guava, mango, and papaya trees. Every time I come home, he’s bringing in a vegetable for mom to cook or slicing up some ripe fruit for a snack. He took one look at my garden and made some changes.

First he moved the plants into a shadier spot. The instructions on the label said they needed full sun, but apparently the direct sunlight was too harsh. Then he moved a couple of them, including the pepper plant, into larger pots because they needed room to spread their roots.Finally he added more soil to the pots, filling them with nutrient rich dirt.

I hadn’t had much hope for them, as I would be leaving for almost a week, but I was greatly surprised. My husband had only had the chance to water them once during that time, and I prayed they hadn’t died from dehydration.When I got home and walked into the backyard I was amazed. The plants were bright and green, and the pepper plant was even starting to grow a little chili.

This made me think a lot about life. I’ve been depressed before, the weight of my lupus and job heavy on my body and heart. I’ve felt the hopelessness of feeling like things will never get better. But little changes can make a huge difference. Removing yourself from toxic situations, changing your environment, surrounding yourself with friends who support you and give you room to grow, feeding yourself with food that nourishes you physically, emotionally, and spiritually can make an impact on your life. And with care from a loving Father, you can turn your life around.

The Right Time

I was at my cousin’s wedding this weekend, and my whole family was there, including my sister and her adorable one year old daughter.  I just got married in September,so everyone was asking when it would be my turn. I answered that we wanted kids but were waiting for the right time.

But when is the right time?

My husband is doing a two year fellowship at a hospital and is working crazy, long hours. He goes in at six thirty, and sometimes doesn’t get home til 10 or even later. He also works every other weekend. We don’t have close family here, so I’d be on my own. We figured we’d wait a couple years, when we could move closer to my family, but now I’m kinda rethinking my plan.

I’m going to be 32 in a couple months, and I’ll be 34 when my husband graduates. I know that I will have a high risk pregnancy because of the lupus and anti-phospholipid antibodies. Honestly, I don’t even know if I will be able to carry, but I’d rather not think about that right now. I’m worried that the longer I wait, the more the risk will increase.

But if I do wait we will have more help and be more financially stable. We will be close to family, so someone will be able to help me during the pregnancy and first few months. I’m also not sure how much I will be able to work during the pregnancy, and I definitely plan on taking the first few months after the baby is born off. My husbands salary will increase after he finishes residency so that will really help with medical bills, and if I’m unable to work.

I’m not sure when the right time is, but I definitely want to get prepared. I plan on seeing a high risk obstetrician to figure out a plan. I know that I may have to make changes to my medications even before I become pregnant. I don’t know when I’ll get pregnant, but when I do, I know it will be the right time.

Beat the Heat

My parents came in to town to visit earlier this week and they wanted to do some sightseeing.  Now I love sightseeing, but that involves a lot of walking around in the blazing summer sun. I don’t know about you, but the bright sun and hot, humid weather can make me feel like crap. I get all achy, and my joints feel kinda swollen, and any exposed skin is susceptible to getting a red, itchy rash. So here are a few tips to protect yourself this summer.

1. Wear sunscreen/sunblock.Growing up I never wore sunscreen. I have brown skin and I never burned, but now if I’m going to be outdoors for a long time I protect myself with a sunblock. It is recommended to use a SPF of 30 or greater. Ladies, don’t forget your faces. You can wear it under makeup or find a moisturizer with sunscreen in it,

2. Wear protective clothing. One of my favorite things are thin cardigans. They are light enough to not make you hot, but offer some good protection from the sun. I have several of them in different colors, so not matter what I’m wearing, I can always throw one on. I also keep an extra neutral toned one in the car. Some people wear hats. I’ve never been to fond of them, but I’ll wear them when I know I will be completely sun exposed.

3. Keep well hydrated. I usually carry a bottle of water in my purse, and one in the car. With the heat, you sweat so much, that you don’t even realize how much fluid you are losing. I drink even if I don’t feel thirsty. When I haven’t had enough water, I really feel it the next day.Dehydration makes me very weak, achy, and lethargic.

4. Get plenty of rest. During those hot summer months, I find I need a little extra sleep. I try to give myself an extra hour at night, and maybe even a little 20-30 min nap in the day.

5. Try to avoid direct sunlight. May seem like a no brainer, but sometimes, we don’t realize we are standing in direct light. At picnics or barbecues, try and find the shadiest spot possible, or bring an umbrella for shade.

Ok, my friends, I hope this helps. Enjoy the summer, but keep cool!