Living with Autoimmune Disease: Finally Some Eye Progress!

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Given that the trials and tribulations of daily life with autoimmune disease sometimes seem to fill my posts here, I try to make sure that I share the good news with readers as well. And I have some good news.

While it might sound like a small thing, at my most recent ophthalmology appointment my physician said "your corneas look good".  This was like music to my ears.  That never happens, despite my best efforts.  The news actually put me in a happy mood for the rest of the day.  I called my husband, my parents, and even some friends after my appointment to share the good word with them.  Now this celebration might sound like overkill, but for me this was truly exciting since I never seem to catch a break.  As many of you with autoimmune disease know, it is not that often that our doctors appointments involve unequivocally positive reports.  My eyes had been feeling better recently--but in the past that has not necessarily meant that I did not have corneal inflammation or uveitis. I have actually come not to trust how my eyes feel as an indication for how they look.

This news was particularly fulfilling, because I actually felt like I had done something which had the effect of improving my health.  I had made a concerted effort to follow a strict routine to care for my eyes, which takes an incredible amount of time on a daily basis, and it was paying dividends.  (I have written about my routine in multiple blog posts click here, here, and here).

It is rare at least for me (and I am guessing for others with AI disease) that our actions seem to matter.  I try to do all the right things my doctors tell me to do to help my condition. It is time consuming and sometimes I have wondered if it makes any difference.  Well, I guess it is currently helping.  At least my eyes.  So I will certainly be keeping up with it.  I know this bit of good news does not mean that my eyes will necessarily stay stable.  But for now, I will just keep smiling and hope my eyes remain cooperative for a while longer.

Nursing Care As It Should Be

While I often devote many of my posts to problems with the medical care I encounter, I do think it is just as important to share my good experiences with medical professionals.  I have been fortunate over the last number of months to have had stellar nursing care when I have been at the hospital for infusion treatments.  These nurses make the ordeal of my monthly treatments at least bearable; and without their care and support I’m not sure that I could tolerate what I repeatedly go through.

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First and foremost, these nurses are obviously good at the medical part of their job.  In my case, they are constantly adjusting my infusions and dealing with the challenge of a having a highly allergic patient.  This usually means extra attention and care, which means extra time.  In addition, the nurses’ jobs are clearly stressful on a daily basis.  Every time I receive treatment, I see some sort of emergency situation arise during the day with one patient or another.  Yet, they are always handling these situations, seemingly with ease.  They take care of the problem and don’t ever seem to lose track of what’s going on with the other patients.   I know this is no accident and that they are highly trained to do just this, but it is still something I find remarkable.

But what led me to write this is post is not just the obvious things they do, but the assortment of little thinks they do that make having to spend time at the hospital a little less of a drag for me.  In short, these nurses provide humanizing care that helps me and I am sure other patients get through difficult health problems.

So many examples come to mind.  I am thinking of one nurse in particular who hugs me upon my arrival.  We share stories about our families and recent events in our lives.  When she finally met my husband, she was excited to put a name to his face and now asks about him every time I’m there.  I am not made to feel like just another patient or a nuisance, which has been the case in many other hospital situations I have had.  It seems to bother her more than me when she puts in my IV. She goes as far to apologize when she puts the needle in and especially if she has to do it a second time.  I know she really does care and such compassionate treatment is rare and truly makes a difference in how a patient feels.

I often observe how she and her co-workers talk to other patients as well. It is really they who explain the side effects of medications and treatment in an understandable way from what I can see.  On many occasions, I have heard other patients thanking these nurses for telling them something that they had no idea about or didn’t quite understand after their visit with their physician.  It is this rapport and relationship building that makes patients comfortable enough to ask a question and share information about a medical problem they are having, and as a result, better medical care occurs.

At the same time, I believe the welcoming atmosphere that the nurses create fosters an overall sense of camaraderie among patients at the infusion center.  I have my regular cross word puzzle buddy who is a grandmother, 40 years my senior.  There is my friend who accompanies his mother for infusions who started to bring me free movie tickets when he learned that I was a fan.  Patients share cookies they have baked.  You get the picture.

I do wonder if others have had similar experiences.  I am also curious if anyone has tried to track the effectiveness of various infusions centers, with patients receiving the same treatments.  I have to believe that the quality of the nursing care in the way they administer treatments, solve problems, and answer questions can really make a difference.  I am certainly grateful for the nurses who treat me and try to let them know it every chance I get.

Calling My Doctor's Office: It Shouldn't Be This Hard

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I had an experience with my internist's office recently that just made my blood boil--and I know that many other patients have had similar interactions with their physician's offices.  My doctor had nothing to do with the interaction and it was a phone call with one of her office administrators that I am writing about.  It was a clear reminder why healthcare can be so unfriendly to patients and why for people with chronic illness constant interaction with the medical system is a stress on its own.

I called my doctor's office to deal with a timely and serious medication issue and to send recent abnormal test results.  I was doing what I was supposed to do--responsibly addressing and coordinating my own medical care between doctors' offices.  The story in brief is that the administrator on the phone repeatedly scolded me for calling the phone number that I did.  She kept repeating, "do not ever call on this number it is for emergencies and for physicians."  I explained that this is the phone number that my internist has specifically given me to call.  (Not to mention that my internist has also given me her cell phone number and direct email and there is good reason for this. She has told me I am one of her most complicated and sickest patients.)

Despite my best efforts to relay the instructions my doctor had given me, it was no use--the scolding just continued.  When I was finally able to relay the reason for my call, which was nearly impossible because the administrator was trying to get me off the phone as quickly as she could, she again repeated that I was never to call this number again. I felt as if I was being treated like a child who is told she had misbehaved.  Not surprisingly, the administrator did not help me with either of the two issues I was calling about.

The reason I see this internist is because she takes my health problems seriously, is responsive and compassionate, and encourages me to be in touch.  But this administrator clearly finds my interaction and communication with the physician bothersome.  I wish that I was not sick and did not require ongoing medical care.

The last thing most people want to do is be involved with a physician's office.  The people who work there should serve as a kind and a effective conduit between patient and doctor, making what is often an unpleasant experience better.  While this is not always the case, I have found that some administrators in physicians' offices seem to relish serving as a barrier between patients and doctors. They are officious as opposed to helping patients. 

I am sure this administrator's work is not always pleasant since it requires dealing with anxious and upset patients at times. But that is the nature of the job.  A helpful and friendly staff member behind the front desk or on the phone at a physician's office can make a huge difference for patients and their families.

As a patient, our best recourse is to file a complaint when we are treated poorly and if the situation is bad enough to leave the doctor's practice.  The next time I see my internist, I will tell her about my interaction with this staff member.  Doctors are in charge of their offices and it is their responsibility to make sure those who work for them do their job well.  In my opinion, there is a real problem in the culture of healthcare when patients, the consumers of healthcare and those who are sick, are treated as the enemy.  

When They Said I had IBS

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A friend was talking about In N-Out Burger and over the weekend, and it reminded me of one of my past experiences with doctors of a different sort than I usually write about.

My husband and I were in Los Angeles eight years ago, before I had any obvious manifestations of autoimmune disease. (I was actually considering a move to LA for graduate school and was torn about what to do but that is a whole other story!)  Our friends in LA and my now hubby raved about the hamburgers at In N-Out and insisted that I had to try one.  Not being much of a fast food gal, I still went for the bait. Initially I enjoyed the meal, but I quickly came to regret my decision--just my luck I had gotten myself a very bad case of food poisoning.  Simple food poisoning usually passes fairly quickly, but this was different. The food had thrown my stomach into complete turmoil and the symptoms lasted weeks after my return home.  Every time I ate, my stomach revolted.

Eventually I went to my internist at the time; he then referred me to a gastrointestinal specialist. They ran tests and cultures to make sure that I hadn't picked up a bacteria or a parasite.  When they came back negative, the GI specialist insisted on a colonoscopy.  It didn't show anything in particular and the doctor then concluded that I had Irritable Bowel Syndrome (IBS).  I know that IBS can be a serious diagnosis and I have several friends who struggle with it.  But, what did this diagnosis mean for me?  It meant I had stomach problems... and since the doctor couldn't find anything with the tests, he threw a catch-all diagnosis on it so he could stop dealing with me.  His therapeutic suggestion?  That I should do yoga to relax--intimating that my stomach upset came from stress.  I was confused.  I had never had stomach problems before this food poisoning.  How did one thing lead to the other?  He didn't know, but the problem was he didn't seem to care.  A switch had been flipped.  Once he decided I had IBS, he immediately decided to go to his "playbook" for IBS: reducing stress was a good cure for him.  It is not that I’m opposed to yoga by itself as a treatment, but rather it was clear that it in my case the suggestion was a convenient way of categorizing and dismissing my symptoms...and getting rid of me.  As I've learned since, there area various treatments and steps one can take to help rebuild the gut, but those weren't discussed. 

Looking back, I still wonder if this physician would have treated a male patient the same way and told him to do yoga and relax. I have a hard time seeing a doctor tell my husband to do that in the same situation.

I guess it shouldn't have surprised me a couple years later when I started to have symptoms of autoimmune disease and doctors kept telling me that if they couldn't see anything wrong in the test results then I couldn't be that sick. At the time I didn’t realize that the process I had endured with my stomach would repeat many more times in the coming years once my autoimmune disease kicked off:

Step 1: Go to doctor for problem.

Step 2: Doctor conducts set of tests they "do" for a particular condition.

Step 3: Test come back inconclusive, slap a diagnosis (or not) on me, and tell the me try to relax or take pain killers.

The concept that further thought and clinical analysis was needed, that what I said was accurate, or that they should try to figure out a potential cause for my symptoms did not seem to enter the equation for most of the doctors I saw.  Or, another one my favorites, that they didn't know what was wrong with me, but I was young and would eventually get better and I just had to wait it out.

Thankfully, my stomach did clear up on its own with careful diet and the tincture of time.  It took almost a year for it to really return to normal.  Maybe this was an early clue as to how sensitive my body is to any assaults or disruptions.  And of course, I will never eat an In N-Out burger again, but the picture of the one above does look particularly good.

Sjogren's and Ear Pain: I thought it was just me

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My ears have not been my friends, especially over the last two years.  I have had ear infections, chondritis, severe and debilitating ear pain and noise sensitivity that made it almost impossible to leave home on many days.  It was just last week that I had a double ear infection and luckily antibiotics did the trick.  As a result of my unhappy ears, I have often looked for a good source of information about Sjogren’s and ear problems and have not found a wealth of information.  However, the recent The Sjogren's Book (which I highly recommend) does have a brief summary by Dr. Soo Kim Abboud of the ear manifestations of Sjogren’s that packs in some important information.  Here are the highlights:

Hearing Loss - Sjogren’s patients are more likely to develop hearing loss both as a result of physical problems with the ear such as the ear canal called conductive hearing loss or problems with the nerves of the ear called sensoneural hearing loss.  Autoimmune hearing loss is a type of sensoneural hearing loss that happens when antibodies attack the auditory nervous system and is usually treated with steroids or other immunosuppressants.

Ringing in the Ears - Also known as tinnitus is more common in Sjogren’s patients especially those who have had nerve related hearing loss.  The reason for the occurrence of ringing in the ears in Sjogren's patients without hearing loss is unknown.  In these patients, biofeedback therapy or noisemaskers are sometimes used to help.

Ear Pain - This was a shocker for me – “As many as 25% of Sjogren’s patients have ear pain”. As someone who suffers from ear pain, I have seen many doctors and they have seemed surprised at the pain or view the pain as disconnected from my Sjogren’s.  So I found this extremely interesting.  While saying a link between Sjogren’s and the cause of the ear pain has not been formally established, Dr. Abboud does discuss two possible causes.  These include:

1)     Dryness in the upper airway causing dysfunction of the eustachian tube, which is responsible for equalizing pressure in the ear.  Eustachian tube dysfunction can cause a number of symptoms including “ear pain, hearing loss, fluid accumulation, and  even infection”.   According to Dr. Abboud, depending on its severity treatment can range from using a nasal steroid and saline to antibiotics to ear tubes.

2)     Relapsing polychondritis is an autoimmune inflammation of the ear cartilage (it may also affect the cartilage of the head and neck) that can cause ear pain in addition to redness and swelling.  This is usually treated with immunosuppressant medications.

After seeing four Ear, Nose, and Throat (ENT) specialists over the last couple years, I have not been able to find one particularly knowledgeable about autoimmune disease.  Right now, I rely on my rheumatologist, neurologist, and allergist to deal with treating my ear symptoms.   I do hope that there will be more medical research about the connection between Sjogren’s and ear-related symptoms.   Have you experienced ear problems related to autoimmune disease and was it hard for you to find proper treatment?