Tag Archives: patient

Ask the Doc- How did you manage your wedding with your lupus?

For anyone who has had a wedding, you know it can be a very busy and stressful time. I had my wedding on September 1, 2013. It was a beautiful day, but it took a lot of work getting there. I had nine months to plan my wedding which was in another state where my family lived. Believe me, there were multiple times when I thought the stress of it all would send me into a flare. Here are some tips on how I got through wedding planning and the big day.

First get organized. Make a list of the things you need to get done, divide them up, and schedule them. So today I will call florists and bakeries. Sunday I’ll go dress shopping. Monday, I’ll go check out some venues. Being able to put everything down on paper, and knowing when you are going to take care of each thing, makes life much easier. You want to avoid doing too much at once. Give yourself a few small tasks or one big task a day. The wedding magazines are really helpful in letting you know when certain things need to be done. Tackling things one at a time, will prevent you from burning out and help you stay right on track.

Delegate, delegate, delegate. I cannot stress this enough. Many hands make light work. I had a lot of help from my bridesmaids, mother, and sisters. So someone was in charge of making decorations, another mailing out invitations, then another checking out places for rehearsal dinner. Get the future hubby involved, it’s his wedding too! Having that kind of help is essential. Now, if you’ve got a little extra money, hiring a wedding planner is a great idea. Some venues wedding packages even come with one.

For a lot of people, dealing with family can add to the stress. Everyone has their opinion of how the wedding should be. My parents have some Indian traditions, and at some point I realized I couldn’t avoid them, even if they added to my costs. The best way to handle this is compromise. Remind then kindly that it is YOUR wedding, but you respect their wishes as well. These are the people you love, and this day is meaningful for them too. See if you can find a common ground. Fighting only causes unnecessary stress for everyone.

The day before the wedding is very important, and I highly recommend not having anything strenuous planned. If possible get things done two days before the wedding. The last thing you want to be doing is working right up to the wire. The day before is a good time to relax, spend time with the fam, or even get a massage/spa treatment. Make sure to get plenty of sleep the night before, eat a good breakfast the day of, and make sure there are snacks and water at hand in your dressing area.

When the big day comes, relax and just let go. Accept that every little detail might not be done, but it is going to be special.If you can, assign a close friend or family member to be in charge of resolving or deflecting any issues, so the only thing you have to focus on is you and your husband and the amazing new life you are committing to. Pace yourself, know your body, and know when to rest. It’s Ok to take a break during pictures or sit out a dance or two. ( BTW it helps if you bring a cute comfy pair of shoes for walking/dancing during reception). If you are drinking, pace yourself too. Alcohol does tend to hit people with lupus harder than other people, so keep in touch with how you are feeling, and save a little energy for your wedding night 🙂

Planning a wedding can be a strenuous thing, but it is totally worth it. It is such a joyous day of being able to share you and your husband’s commitment with the people you love. No matter what happens it will be perfect, because you are marrying the love of your life.

Moving

Well, I am moving in less than a week for my husband’s job, and I am starting to stress out big time. I’m not good with change, and this is a lot of change all at once. We are moving to a completely different city one hour away from where we were before. It’s taken the four years that we’ve lived here for me to finally get comfortable and make friends, and now we’re moving. There isn’t a bone in me that wants to move, and I’ve seriously been dreading moving day.

We will have a new home which I love, but I will admit I’m nervous about because of the stairs. Normally stairs aren’t a problem. I do the stair master at the gym, which, BTW ladies does wonders for the booty. But when I’m having joint pain, or a really bad flare, I worry about getting in and out of the house. It was a concern before I chose this place, but it was the best choice due to location and space.

Then there’s the job hunt. I’ve interviewed at a few places, but I haven’t signed a contract yet. I have this huge fear about about getting stuck in a miserable practice that is completely profit driven, instead of patient centered. I had a really horrible experience with my first job that I was at for two years. I’ll tell you the story sometime, and you’ll understand.

And the packing is making me crazy. It isn’t just that it’s physical labor but it’s emotionally taxing. I am very sentimental and I save everything. I’m talking receipts from a romantic dinner my husband took me too three years ago and clothes that I wore in high school (they will NEVER fit me again). Moving is the best time to de-clutter, and I’ve had to grudgingly throw away a lot of things that I’m seriously attached too.

With all the stress and change, I’m starting to worry about having a flare. And that’s when I realize, I just need to stop, take a deep breath, and know that everything is going to be OK. Life is going to be full of change, especially when I have lupus. I just have to have relax and have faith that I’m on the right track. God’s got a plan for me far better than I could even imagine.

Risk vs benefit

It’s no secret that every treatment has a side affect. And sometimes it seems that we end having more treatment just to treat the side effects. It may see logical to just stop the offending drug, but there really is a lot more that goes into determining a treatment plan. Let me explain.

When it ones to determining a patient’s treatment a lot of things come into play. Allergies. Age. Other medical conditions. Medication interaction.Cost. Patient’s lifestyle and ability to be compliant. And then there comes side affects.

As physicians, we have to take into consideration everything to tailor the treatment for each individual. Let me illustrate. I had a 50 yr old African American who came in for a physical. When I looked at his blood pressure it was high. He begged me not to put him on medications, so I agreed that if he really changed his diet and started seriously exercising we could check in a month. A month later, no change. So I started him on a BP medication which studies had shown worked very well in the African American population. He called me a couple days later complaining of allergic reaction. We stopped the medication and I started him on a water pill. When he came in for another BP check, the blood pressure was normal but he complained of having to urinate every hour. He drives a truck for a living, so it was affecting his lifestyle. I sorted through options in my mind- this one isn’t covered by his insurance, this one isn’t good in people who have abnormal kidney function. Eventually we found a good option for him, but it wasn’t easy.

Most medications come with certain warning labels. May cause such and such. Don’t take if. As a physician we have to weigh out the risk and benefit. Is it worth giving a medication that may cause a bad side effect if we know it’s going to save a person’s life?

For instance, a lot of these lupus meds have some pretty bad side effects. Currently I am on a medication which lowered my white blood count and made me very anemic- both fairly dangerous things.Now this medication has been great up until that point. It was controlling my symptoms and it has been protecting my other organs, like my kidneys. I was finally able to get off long term steroids on this medication. The option to put me on a different medication was offered, but since it would involved coming in regularly to sit for a few hours for infusion, I opted out. It would take a toll at work. In the end, we decided to just lower my current dose a little, and keep a closer eye on the bloodwork.

Treatment is a very specialized art, and it involves a very delicate balance. Doctors and patients should work together on this, but at the end of the day you have to ask yourself “Is the risk worth the benefit?”

My Story: Part 7- Self Esteem

Being diagnosed with lupus was a major blow to my self-esteem. I was used to to being a very independent person. I did want I wanted, when I wanted. Being in control of my life made me feel confident. I liked seeing myself as a self-sufficient person.

But now I felt weak. I felt like I was somehow less than all of my colleagues. I would never be that strong woman again. I was embarrassed for people to know. I was afraid of what they would think of me, feeling sorry for me for being a pathetic, helpless person.

As physicians we and our patients hold us to a higher standard. We don’t need to eat, sleep, or go to the bathroom. But here I was needing ten hours of sleep at night, and as many naps as possible. I needed to eat meals so I could take my medications. I was running out of clinic to go use the bathroom because my meds were upsetting my stomach.

Then there was the weight gain. I gained about 20-30 pounds that first year from steroids and my inability to exercise. Previous to my diagnosis, I considered myself to be a pretty girl, maybe even a little sexy. I wasn’t skinny, but I was curvy in all the right places. I was used to guys finding me attractive and flirting with me. I wasn’t perfect,but I felt good about my appearance.

Not only did I gain weight but my whole shape changed. My tummy got fuller, my face got rounder, and my upper back developed a little hump. My lashes became so thin, that even with mascara, you could barely see them. Guys wouldn’t even give me a second glance. I wasn’t even the same person anymore. I was ugly.

It’s taken a really long time to regain some of my self worth, but I don’t feel the same as before. I’ve lost most of the weight, and have started to take my normal shape. As I see how much I still am capable of doing, I realize that I am a strong person, perhaps stronger than before. It is going to take time, and a lot of work, but I believe the person I become will be even better than the person I was before.

Ask the Doc- Why isn’t my doc willing to hear out my ideas?

A reader wrote in about a concern she had with her dermatologist. Her concern is that her current treatment is causing more harm than good. She has tried to show him research studies that she has found about the issue, but he won’t read them. She has also tried to show the study to her PCP, but hasn’t had any success.

In the doctor-patient relationship, I believe it is very important that there is trust between both parties. Patients need to trust their physician’s judgement and believe that their doctor is looking out for their best interest. But this does not mean they cannot seek further explanation or information.Patients have a right and responsibility to be involved in their care and treatment, and advocate for themselves.

As a physician, I believe in addressing my patient’s concerns, even if they may seem trivial. I may not always agree with what my patients are saying, but I believe it is worth considering, even if it is to simply show my patients that I respect and care about their feelings. Doctors have extensive medical knowledge and training which guides their decisions, but that doesn’t give us permission to completely dismiss our patient’s opinions.

Although we may be open to our patient’s ideas, sometimes our hands are tied. We have to be careful about going off- protocol, as does anyone in any other profession. There are standards of care in medicine, and treatment plans constructed around evidence-based medicine. Deterring from these standards can cause major issues for a physician.If there were to be a negative outcome due to a physician going off label, or denying the recommended treatment, the physician can be held liable as well as feel the guilt of going against consistently proven methods and causing damage.

I think the real issue here is that the reader does not feel that the dermatologist is being receptive of her concerns. I would encourage anyone in this situation to make their doctor aware that they feel their concerns are being ignored. We sometimes get so focused on the plan we have in our head, that we don’t realized we’ve stopped listening. If the physician is still not willing to listen, then I think it’s not a bad idea to get a second opinion. At the end of the day, the doctor and patient should work together as team with one goal- providing the best care for the patient.

My Story: Part 6- Lupus Educational Meeting

Feeling isolated from my friends and family, I decided to seek support at a lupus meeting. My husband drove me into the city to go to a educational meeting, and I remember being so nervous walking into the room with him. I was excited to finally be meeting people like me, but I just didn’t know what to expect. I hadn’t managed too many patients with lupus before, as they usually went to see a rheumatologist.

I walked into the room and my heart dropped. There were people of all ages, mostly women. I watched as they hobbled in with canes, others sitting looking disheveled. There were a couple who looked put together, but the majority really looked like they had struggled to make it out of their home.We sat at tables in groups, and no one was talking to each other. There was an emptiness and sense of hopelessness in their eyes.

After the guest speaker presented, she started to answer audience questions. If I was feeling uncomfortable before, then now I was really a fish out of water. The majority of the questions were not so much about the disease itself, but about the social issues. How to apply for different disability services, where to find free care. Some just simply stating that they felt lost.

I wanted to run right out of there. No. They were not like me. I would not be like them. I would continue working. I had plans. I had a life. Fear crept inside my heart. Anxiety about becoming so disabled I would not be able to continue my career as a physician filled my head. Years of hard work would get flushed down the toilet.

I tried to ease my anxiety by talking to the the presenter after the question and answer session.I asked her what my options were.Are there ways I could make my career work for me? Medicine is a high stress job, and I was wondering if there was something I could do within the field that was less taxing. What if I couldn’t work? What would happen to my loans? Or if I decided to work part-time, would there be a way for me to get health insurance?

To my dismay, she didn’t have any answers. She suggested I speak to social services. I left that meeting more terrified and isolated than before. I decided then that I wanted nothing to do with the lupus community, and I would just deal with my problems on my own. It was just too scary to face my future with this disease.

Misunderstanding

The other day, at the office, a receptionist told me a story about her recent emergency room visit. She was having a migraine, and when she came into her room, they asked for a urine sample. She had just used the restroom, and told them that she would be unable to give a sample. They told her they would not be able to give her any medication without the urine sample. She was so angry that she left and went to a different ER.

At the different ER, she was eventually treated and given a prescription for her regular migraine medication. She complained that every time she sees her neurologist, he only gives her seven pills. She understood that insurance would only pay for that amount, but she felt if he wrote for more, then she would just pay out of pocket for the extra. She gets more than seven migraines a month.

I explained to her that in the ER they took her urine to test for pregnancy. A lot of medications cannot be used in pregnancy, and tests such as CT scans can cause radiation and affect a growing fetus. She argued that she told them she was menstruating, to which I replied that sometimes women can have  bleeding that resemble their periods even while being pregnant.

I also explained that when pain is involved, sometimes they need to do drug screening to make sure the patient is not using recreational drugs, or abusing prescription medications. I told her that doctors have become suspicious when patients aren’t willing to give a urine sample because many drug-seekers use this tactic to avoid getting caught and obtain pain medications for recreational habit or to sell.

I then explained that the reason she only gets seven migraine pills is because it is an as needed medication to be taken only when she has a migraine. It is a quick onset medication to be used when the migraine symptoms begin so it will not worsen. If she is having such frequent migraines, it may mean that she needs to be on a daily medication to prevent migraines.

She agreed to see her neurologist, and that’s when I realized so much of the discord between doctors and patients is due to simple misunderstanding. By simply educating patients, we can empower them. So in an attempt to keep the air clear, I’d like to answer any general questions you may have. Send me your questions, and I will post them with my answer. Here’s your chance to “Ask the Doc”

Please keep in mind that I cannot offer medical treatment advice.

Rain, rain, go away!

So, my knees started to ache a little last night. I thought maybe it was from my beastly resistance training workout, but when I woke up this morning I heard the soft downpour of rain.
I’m sure many of you have experienced this. Cold or rainy weather worsening joint pain or body aches.
I’ve been doing some research, and I wanted to find a scientific paper on the affects of weather on joint pain and lupus. I haven’t found anything other than speculation of joint pain being related to humidity and barometric pressure. Here is one link I found www.specialtyclinics.med.sc.edu/joint_pain.asp

If anyone has seen any good articles explaining the relationship between lupus and bad weather, please feel free to share!

World Lupus Day!

Today is World Lupus Day! This is a day to raise awareness and support those who are working hard to promote lupus education! I would like to feature Lupus Connection, a non-profit group in Florida thats provides support services for patients in the area. They offer coaching as well as much needed educational and health activities. They also have a blog where I and other lupus bloggers, including the site administrator share our stories.Currently they have developed a ” live lupie” product line to promote awareness and raise funds for their work. I’ve checked out their stuff, and personally love their Reimagine design. Please check out their site Lupus Connection, and support their great mission!

Rachel’s story

Today I’d like to share Rachel’s story. These are her words just edited for grammar and spelling. Thank you Rachel for sharing your beautiful story. You truly are an amazing woman.

In 1999, my mother had a stroke at work. She was nurse. After her stroke, her body started to do strange things. The doctors did some tests but because lupus is so hard to diagnose it took a long time to finally come to the conclusion that it was lupus. She had a sore that they biopsied which was how they found out it was lupus And that is when the battle began.

She went from being a hard working nurse, wife, mother and grandmother to a woman who was so tired at times she could not get out of bed . She did not look sick so most people did not seem to think she was really sick. As time went by she was in and out of the hospital too many times to count. Her hair fell out, she had sores all over her skin, and she was always sick with something.The time came that she had to stop working. It was really sad because she loved her work so much. She loved helping sick people and it broke her heart to stop. But she had to.

After that things got even worse. Eight years into this disease, I started taking care of her and she had a basket of meds a mile high. She needed help with showering and dressing. I had to beg her to eat as she was losing weight fast. She was my mother and best friend and she had taken care of me my whole life.

In the end my stepfather came to me and said he was never home and I needed to either come live with them and take care of her or take her home with me, or we would put her in a nursing home. Although I worked, I brought her home. By this point, her mind was going because of the drugs and the illness, so I took care of her. I’m glad I did because I got to be a part of the last days of this amazing woman’s life. My body was hurting and I was tired but there was no time to think of me, only her and all I had to do.

Two years ago and after a twelve year long fight I held that amazing women’s hand as she took her last breath. She was free now. No more pain. No more lonely days as the world went on with their life while she could no longer keep up. Just peace for her which she had begged for. As much as it hurt I had to move on. She is in my heart always.

Now it was time to deal with my kidney’s problems that I believed I had gotten from my father. The doctors could not figure out why my kidneys where going bad. After almost three years, I got a sore. I had lupus as I was taking of my mother. I was suffering from the same thing, I just did not know it. After taking care of my mom with lupus, knowing what is to come, I am not sure if that is a blessing or a curse, but I would not change it for anything. My story is still being told but now her story has been told and may help someone else. God bless all who have this mysterious disease. I pray this helps someone as it helped me to tell it.

If anyone else has a special story that they would like posted, please send it to me, and I will edit and share it. You never know whose life you will touch.