Thursday, August 12, 2010

You Deserve Good Care


Image by hoefi
Recently I received this letter:

Julia, 
I just wanted to say thank you for your blog site. I have related to you on so many levels. I do not have a Sjogren's diagnosis as yet, but I suspect it. My father suggested that I could have this condition after he was diagnosed several years ago. Sadly he died shortly after his diagnosis due to complications of Sjogren's. I was tested after his death, and when the blood test came up negative, I really didn't think about it again. 
     I have many symptoms of this disease and my most recent problems caused me to rethink SS. Recent symptoms include episodes of joint and muscle pain, sometimes with low fever, and an incredibly dry scalp with small bumps, some even hard when palpated. 
     I am a second year nursing student, and struggling with cognitive changes (SloooMooow describes it best). Eye and vaginal dryness as well. When you describe your experiences, I see myself.
     Do you have any suggestions of how to approach my doctor? My doctor already thinks I'm a hypochondriac. I am about to fail out of my RN program and I am devastated. 
     - C.

C's letter makes me wish that she could magically appear in front of me so that I could give her a hug. I wish I could make things all better, I really do.

I chose to post an edited version of her letter on Reasonably Well because C. has voiced the same concerns that I have heard from many others: She's having significant health issues. She wants answers and help but her physician is not taking her complaints seriously. What to do?

C., please know that you deserve good care. If you have the resources to choose another doctor, do it NOW - be it another general practitioner or get a referral to a rheumatologist. This, I think is one of the most important things that a health care consumer should know - that as long as you communicate your concerns in a respectful and clear way, you deserve the same in return from your doctor. If you aren't being treated this way, fire him/her. You deserve answers.

You deserve answers, you deserve good medical care, and you deserve the support that you need to be successful in your career goals.

I would advise you to begin taking the best possible care of your body that you can as you and your physician explore the root cause of your symptoms. Being in a rigorous course of study such as nursing, you need to stock up all of your body's reserves. Eat well, get lots of sleep, and minimize the stress in your surroundings as much as possible. And I know......reducing stress is a difficult thing to do, especially during college. Look for valuable emotional support from those that care about you. It's so important right now. Limit the time you spend with those that seem to drain energy from you. You need every ounce of energy to be successful. Gravitate toward those relationships that nourish and support you.

All these things will help you to deal with your " SloooowMooow" brain. Unfortunately I don't believe that there is a medication at this time that will resolve brain fog. I sure wish there were. You can read more about brain fog here and here.

You may want to consider taking fish oil supplements in recommended dosages. You can read more about the benefits of fish oil and it's omega 3 fatty acids here. Several studies have shown that omega 3 fatty acids assist in the body's defense of inflammation such as can be experienced in those sore joints. It has also been linked in preliminary studies in the successful reduction of dry eye symptoms. You can read more about omega 3s and their suggested use here and here.

You may want to explore a few ways to deal with your dryness as well. You mentioned that your scalp in particular is problematic. I have found that my days of washing and drying my hair daily are long gone. The skin over my entire body, including my scalp, has become increasingly dry and flakey with the arrival of Sjogren's syndrome. It has been suggested to me that I wash my hair much less frequently since even shampoo designed for dry hair can strip precious oils and moisture from your scalp. I also air-dry my hair whenever possible. When using products that moisturize your skin, be sure to look for products that don't contain any form of alcohol such as in frequently seen in skin lotions. Butters and creams usually contain less or no alcohol so are less drying to the skin.

I have only touched on a few of the many issues that follow with autoimmune disease. If you want to read more, see my sidebar for other posts and links to other sites.

I sincerely hope that you can find answers to your medical concerns! And I'm wishing you all the best with your studies! Hang in there - we need more good nurses and care providers who can understand the difficulties that those of us with autoimmune disease face.

Readers? I'm asking you to chime in here. We have all found ourselves in that "what is wrong with me" stage. What other suggestions do you have for C.?

5 comments:

Erna Aalberg said...

Find a doctor who wants to listen to you!After seven years without knowing what was wrong with me, I changed to another hospital. Then I had the diagnosis in a couple of weeks, after taking a lip biopsi. I am a educated nurse as well, and I will say to C, dont give up, the world needs nurses with knowledge about autoimmune diseases. Thank you Julia for all your information about Sjøgrens, I read your blogsite every day! Here in Norway I have not found a single blogsite about this disease.Excuse me for my English and have a nice day!:-)

Blogger Mama said...

Patients definitely have to be their own advocates now. Doctors tend to be too busy with such big working loads that they don't usually have the time to dig deeper unless you push them to. Find a good rheumatologist. If you don't like the first, ask to see another, and another, until you find one you love. My rheumatologist has made ALL the difference in my Sjs. I went from feeling like I was lost in a sea of pain and confusion to feeling like she is helping me control my own health (for the moment).

annie said...

You deserve good care...absolutely!
Based on my experiences, keep seeing your doctors,even when they don't believe you, because at some point, one of your doctors will pick up the clues. Look at me, after many years of being undiagnosed, I was given a diagnosis of fibromyalgia and chronic fatigue syndrome. Ten years later, I was finally diagnosed with sjogren's. It took my rheumatologist to do the bloodwork on me last year and to finally confirm that my illness was not imaginary.The same blood tests were done on me many years ago and everything was negative. This a very difficult illness to diagnose.You must persevere and never give up until you have your answers. Wishing you best of luck and lots of patience. Keep reading Julia's blog, she's an amazing resource for sjogren's. Thanks again, Julia, for all you do.

Julia said...

Erna and Annie, I appreciate your kind comments. I'm glad that my muddling around on this site has a few nuggets of useful information.

Blogger Mama - you chose exactly the right word to describe what I was trying to say, and that is to be your own advocate. Well said.

Julia said...

C. asked me to relay the following comments - "Thank everyone for the great suggestions for me.
An update: my first cousin was just diagnosed with SS. And Julia - I still got the hug! Thanks again!"

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