Tag Archives: lupus

My Story: Part 8- Faith

I think the the part of my life most affected by my diagnosis with lupus was my faith. At the time before my diagnosis, I was on a roll. I was doing really well at work, was in the running for chief resident, on my way to becoming a licensed physician. I had a really awesome boyfriend and flourishing relationship. My body was getting in shape and I was confident. I felt good about myself and my life. I felt powerful, and I felt like my life was finally in complete control. I was self reliant and could do everything on my own. I didn’t need anything or anyone because I had it all.

But then it happened. I was diagnosed with lupus and my whole world came crashing down. I no longer was in control of my body or my life. And that’s when I realized I needed God.

Now, I grew up Christian and attended church weekly for the most part. Religion was always a part of my life, but it was something I just did out of habit, maybe even out of guilt or obligation. It was never really a personal thing. There were times when I had felt close to God, but it wasn’t constant. It was only during times of need.

And now another time of need presented itself. But this time it was very different. I had never had an issue in my life before that would cause such a drastic and complete change in my life. And here I was completely lost, and life was completely out of my hands. But it was in God’s hands. He was in control. It didn’t mean that life would be easy, but now I knew I had Someone who cared for me and could heal me.

Through the blessings and the trials my faith in God grew. I would like to say that my faith is and was always strong, but that’s not the truth. As I got better, I would start to feel
like I didn’t need God again. Or when I was feeling really sick or hopeless, I would doubt God’s love and plan for my life. But as time has passed, and I have witnessed the healing and the love, I have learned to trust in God and His purpose for my life.

I know that we all have different beliefs, but I wanted to share mine because it’s such an important part of my life. It is not my intention to push my beliefs on anyone else. My personal relationship with God has formed the person I am today and has developed my perspective on life.

For those of us who are believers, I think it’s very important to be strong in our faith and continue our support for each other in prayers. If anyone would like to be added to the Prayer Corner, please let me know.

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.

Weekend Trip

So I am going down South to visit my family this weekend. It’s my niece’s one year birthday and dedication. Now I usually fly down every couple months, but it’s been seven months. This really is the longest it’s been since I’ve been back.

Since I started my new job, it’s been tough to go down there. I work Fridays and Mondays and it doesn’t make sense to fly down for less that 48 hrs. And with the part time hours, I definitely do not have the funds to fly as often.So I’m super excited I have the chance to go, and as a bonus my husband will come too.

There was a time earlier on when I was afraid to fly home because of my health. I worried about being there with my family, and having one of my pain episodes and they wouldn’t understand or be able to help me. For a time I really was worried about being with them for more than a couple days, without my husband.

I did that with other trips too. Afraid to go away for weekend conferences with friends, or to drive the five hours to go see my aunts and uncles. Worried about planning things and then having to cancel and lose money.

I also have this weird paranoia about running out or losing meds on vacation. I always back an extra three days worth in my pill box to keep in my purse, but then I fill an empty medicine bottle with a jumble of more meds, just in case, and hide that in my backpack. If I’m feeling especially nervous I pack unable mixed bottle and slip it into my suitcase. You should see how many times I check and recheck my pillbox.

Travelling is one of my favorite things to do. And so is being with my friends and family. I’ve realized I can’t live my life being afraid of what might happen.I have to live in the now without fear. But it still doesn’t hurt to buy a lil travel protection:)

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.

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!

My Story: Part 5- Family

I also waited in telling my family, but for different reasons. My parents and two sisters live in a different state and I didn’t want them worrying about me. I knew they would want to come up and see me, and I lived in such a tiny place, and could barely take care of myself, I wasn’t ready to host them.

I told them a couple weeks after I was officially diagnosed, but I minimized it considerably. They naturally want to see me and I agreed to let them come a couple months later, after I had moved into my new place with my boyfriend.

When they came, it was like nothing was different. I had been on the high dose steroids for a couple months, and my energy and pain levels were almost back to normal. I was able to take a day trip out to the beach with them and spend the day walking around the city another day. The only thing that was slightly different about me was my shape. My mother had bought a couple dresses for me and when I tried to put them on, they wouldn’t zip up the back.

My family went back home with the sense that everything was normal, and I was fine. The lupus had resolved, and I was no longer sick. Part of me had wanted them to feel that way because I didn’t want to stress out my not so healthy parents, but another part of me wanted the attention, and wanted them to be concerned. I would feel jealous when they would go running to my sister when she would have a mild asthma attack, while I was suffering with something far more serious.

My family really didn’t understand until I came home for a week on vacation. I had been having serious fatigue and body aches. Usually when I went home on vacation, I was always out visiting with my friends, coming home only to eat with my family. Since I went to medical school and college in different cities, an hour away from each other, I usually did quite a bit of travelling and overnight stays. This time it was different. I stayed in bed all day, not even wanting to go out for special mother/daughter time.  I think it really hit my father when he saw me walking bent over because I was so stiff.

I still hide a lot of what’s going on with me, but I’ve learned that I don’t have to keep it all a secret. I can share my feelings and receive the support I need, without distressing my family. I don’t  need shut out the people who love me anymore.

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.

My Story: Part 4-Friends

I waited a few weeks before I told my friends. I wanted to try and make sense of things first, and part of me felt embarrassed. I don’t really recall making a big deal of it and calling my friends just to let them know. I just brought it up casually when I had spoke to them, and usually it only came up when I wasn’t feeling well and had to explain myself.

I remember defending myself to a girlfriend about why I couldn’t go out to the club one night. She didn’t understand why I could no longer stay up til 3 in the morning dancing. Prior to lupus, I could go out all night, drive home late, or even crash at a friend’s place without thinking twice. As much as I tried to explain the fatigue and body pain, she felt like I was making excuses. She accused me of ditching my friends because I had a boyfriend now.

I wasn’t able to go out as much, even though I wanted to hang out with my friends. After declining several invitations, friends stopped inviting me out. It crushed me that no one understood and was willing to just come meet me and hang out locally. I felt very isolated at that time, and felt the only person I had to talk to and hang out with was my boyfriend. It was a really lonely time.

There were times that I wanted to ask for help, but my pride wouldn’t let me. I didn’t want to inconvenience anyone. Sometimes, I just wished they would call me, ask how I was doing,  ask if there was anything I needed. It felt like no one cared.

Maybe it was my own fault. I never really told anyone just how bad it was. I never really shared how I was feeling, or that I needed their support. I hid my pain, and my fears and anxiety. I pretended everything was okay, so how could I expect anyone to know what was going on inside of me?

I did gradually start telling more of my friends, and I started to get comfortable sharing what I was experiencing. But this led to another set of issues. I know my friends always felt uncomfortable, unsure of what to say. They were always offering impractical advice, telling me to just stay positive, or telling me how a friend of a friend of a friend has lupus and she’s doing just fine. Or they would say they would pray for me, or they were there for me, but that would be it. No follow up, no checking in.

Dealing with my friends was one of the hardest parts of being with diagnosed with lupus, and it made me realize I need to work on my communication more. I am still learning how to express myself clearly and be direct about asking for what I need and want.