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Category: health care system

The Vulnerability Of Being A Patient

August 15, 2013 / / 6 Comments

This is a health related blog entry that is not just about Sjögren’s. I say this because I know that sometimes non-Sjögren’s people read the blog title or the first few sentences and decide they are not interested in the subject. I know this because well, people have told me. And for the record, I think that is awesome because I love honesty and because I frequently do the same thing when reading blogs. But this one is important because at some point in our lives most everyone, even my extremely healthy husband, has to see a doctor in this country.

We all know what the state of health care is like in this country and to be honest, I have no desire to get all editorial about that. But because I am constantly immersed in the health care system, people ask my opinion a lot and I read stories and scenarios online about other patients who find themselves in situations that they think are unique to them. So I am going to share with you all a recent scenario that happened to me and how I dealt with it. It doesn’t mean that what I did was right for everyone but I want to share it because I think it is important. I wish it wasn’t because frankly, I would rather not talk about my bladder but for the sake of the greater good, I will.

About a year ago, I experienced some new symptoms that strongly mimicked the symptoms of a urinary tract infection (UTI). Pelvic pain and a feeling like I had to go to the bathroom all the time. I was treated with antibiotics and my symptoms seemed to go away. Since that time I noticed these same symptoms on a few other occasions; sometimes I would be given antibiotics although looking back, I realize that I never had a positive urine for an infection. I was being treated primarily because of my symptoms and because I kept telling my different doctors that I thought I had a UTI. Sometimes the symptoms went away on their own. In the back of my head, I knew something else might be going on because things just didn’t seem “right”. When I went to urinate, the urine wouldn’t come out as easily as it typically did and I frequently felt like I had to go even though I had just been in the bathroom ten minutes earlier. I kept mentioning this to different medical professionals but I never made a big deal about it because it always went away and when you have an autoimmune illness as complicated as mine is, you cannot possibly pay attention to every single physical symptom. You would go crazy, trust me. Plus I was dealing with other physical issues, planning a wedding, trying to get a book published, had a death in my family, and all kinds of other more important issues.

Then the second week of June 2013 came and the pelvic pain came back with a vengeance. I don’t think it was a coincidence that it was right after my wedding (good stress). It would still come and go but I was really struggling on the toilet. Sometimes a trip to the bathroom made me sob it hurt so much. I had my urine tested and it was negative. I began to wonder if I had a Sjögren’s related complication called interstitial cystitis. So I called my nephrologist, who is a kidney doctor, and he referred me to a urologist, a bladder doctor. It was a doctor I had heard of and he was based out of a local community hospital that I hadn’t been to in years. I read some reviews online of him that seemed favorable. For the sake of avoiding a lawsuit, we will call him Dr. B (for bladder).

I was a little nervous about seeing a new doctor, especially because my symptoms waxed and waned and I had my credibility doubted in the past before I was accurately diagnosed with Sjögren’s syndrome. The whole thing got off on the wrong foot because I showed up for the appointment only to find out it had been the previous day. I had been given the wrong date. I then had to wait another several weeks to get another appointment and my symptoms were worsening by the week.

I finally got to my new appointment day with Dr. B.  I registered in the lobby of the hospital where I found out they had a lot of my information wrong. I then proceeded to the clinic/office and I was actually confused where to go. There were no signs indicating I was in the right place and when I asked a staff person, I was spoken to in a sharp tone. You could tell that she was stressed. I was told to take a seat.

After waiting well past my appointment time, I had my visit with Dr. B. I am going to start by saying that when I meet a new doctor, I go into that visit with a smile on my face and a positive attitude. I feel that it is important in building a rapport with someone. My positive attitude quickly took a turn as I found myself in a head to head argument with Dr. B. several minutes into the visit. He was asking me my medical history and I told him I had my adenoids removed when I was a toddler. He then reiterated to me that I had my tonsils and adenoids removed. I corrected him and said no, just the adenoids were removed and the argument followed. As a pediatric nurse, I know that typically tonsils and adenoids are removed at the same time these days but for whatever reason, only my adenoids were removed back in 1974. He told me that wasn’t possible. I asked him if he wanted to look in my throat. He declined. Remember, this is a urologist, not an ear, nose, and throat doctor.

The visit went downhill from there. He wanted to do another ultrasound as the one from a few months ago was suspicious for urinary retention. He didn’t seem to hear me when I told him that the nephrologist thought that the urinary retention was from a medicine I was on at the time and no longer took. He mentioned the possibilities of Parkinson’s or some other type of neurological disorder. I wasn’t against this testing but I brought up the possibility of interstitial cystitis related to Sjögren’s. I was again dismissed in a condescending tone and told that interstitial cystitis itself is rare, I don’t fit the profile, and Sjögren’s doesn’t cause bladder complications. I have come to find out that cystitis can affect anywhere from 10-30% of people with Sjögren’s. He never did a physical exam of any kind.The visit ended with him asking me why I was on Medicare. I’m not sure why that mattered but I told him I was disabled from Sjögren’s. His response indicted to me that he did not think that having Sjögren’s was a good reason to be disabled.

I sat in the waiting room in disbelief. First, I could not believe that a doctor actually got away with talking to people like that. And second, I was shocked at myself for not just getting up and leaving during the visit. Then I tried to think about my own behavior and interaction to see if part of this was my responsibility. It took me all of five minutes to realize that my behavior was extremely appropriate but it was also assertive and I knew what I was talking about. I think that may have upset this doctor. As I got my test dates and then drove home, I thought about what to do. I was very upset. I knew I was starting to get worse but I could not see myself going back to this doctor for any reason. If I started all over with a new doctor, there could be no telling how sick I might get while trying to find a new doctor and then waiting for an appointment.

I felt vulnerable. This doctor’s appointment left me feeling helpless and inferior when I left the office. I am a well educated, professional nurse who has more knowledge of Sjögren’s syndrome than probably most physicians in this country and yet I now questioned myself because someone had the initials M.D. after their name. I also knew that I desperately needed his help. It wasn’t only that he didn’t recognize or have the knowledge about my autoimmune illness, it was about the fact that he just did not care. He let his pride stand in the way of hearing me when I tried to tell him the information I read from the Sjögren’s Syndrome Foundation about bladder issues. I didn’t know for sure if that was the issue, but I did expect to have a reasonable conversation about it. I expected to be treated as a partner in my own health care. I expected to be treated with respect.

So what did I do? Within several hours of getting home, I decided that there was no way I could work with this doctor. I cancelled my tests and I started the process of finding another urologist which took me a very short period of time. Within three days, I had an appointment set up with a urologist at Lahey Clinic in the Boston area. Two hours from home. I made the decision to go there for several reasons; the biggest one being that they are nationally recognized for their urology program. Two more weeks I would have to wait.

Things did go from bad to worse for me in regards to my bladder issues. In those two weeks, I ended up in the emergency room with some of the worse pain I have had in my life; and that is saying a lot! But it was worth it. And I will explain why.

From the moment, and I literally mean moment, I stepped into Lahey Clinic, I was treated with the utmost respect. People would stop me in the hall (guess I was looking a little confused) and asked if they could help me get to my location. When I walked into the Urology Institute, I felt like I had stepped onto another planet. They were organized and on time. Before I saw the doctor the first time, I met with a nurse who did a urine test and a scan of my bladder afterwards to make sure I was not retaining any urine. She explained to me the entire process of what my visit would be like. She handed me two forms to fill out and guess what the first form was? An interstitial cystitis questionnaire. It was obvious to me that someone had bothered to look at the medical records I had sent over. It was obvious to me that my doctor had a clue about autoimmune issues.

The doctor I met with truly listened to me and we came up with a plan together. He told me he suspected that I had interstitial cystitis (IC) . Within a few days of my visit, I went downhill even further and talked to an on-call doctor on a Saturday who helped me figure out a medication plan to get me through the weekend.  When I called the office back on Tuesday, a receptionist listened to me explain my situation and got me an appointment for the next day with one of the nurse practitioners. Again I was listened to, we explored all the options, and it was decided that my procedure/OR date should be moved up. My appointment was a Wednesday and I was scheduled for the OR on Monday for a cystoscopy with hydrodistension to evaluate and treat for possible IC. While I was at the hospital for this appointment, they had me do my preoperative registration and blood work that same day since I lived so far away. Most importantly, I was treated with respect. That is excellent medical care.

So what is my point in telling you this huge and drawn out story? Well, we all must decide for ourselves what we are willing to put up with and what we are not. We must also weigh the risks and benefits of every medical situation. That being said, it is NEVER acceptable to be treated by a medical professional in a way that is demeaning, rude, or uncomfortable. It doesn’t matter what your medical issue is and it doesn’t matter how much pain you are in. It doesn’t matter if the doctor does not like you and it doesn’t matter if he is having a bad day. Doctors have bad days just like the rest of us however they are also professionals. And you are the patient. Just being a patient makes you vulnerable when you step across their threshold. I am not saying to dismiss someone because they disagree with you (I have certainly had my share of disagreements with doctors) but you should never feel disrespected and you should certainly never leave an office in tears because of a medical professional. You deserve better. We all do.

We often hear and see online and in the media about healthy relationships versus dysfunctional ones. We hear about abusive spouses and toxic friends. We learn about what is acceptable behavior and what is not. We teach our children about bullying. But what about the very people who sometimes literally hold our lives and well being in their hands? Shouldn’t they be held to the same standards? Í am not saying that all doctors are rude, inappropriate, or bullies. I, in fact, have seven who are none of those things and are some of the best doctors out there. So if you encounter a situation like this, know that there are not alone, know that you deserve better, and don’t quit until you get what you need.

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I know that I am fortunate. My experiences took place in a state where the eastern side of the state, two hours away from me, is riddled with some of the top hospitals and doctors in the country. I have never lived anywhere else besides western Massachusetts but I do understand that access to better care may not be as easy for some of you as it was for me. I would be interested in hearing your thoughts and stories regarding that or in regards to anything discussed in this essay.

Medicare, Blue Cross/Blue Shield, and Me

September 21, 2012 / / 5 Comments



Found this kind of funny since I have a busted up foot and have no health insurance. Well, at least at the beginning of the story…

 

Note: This essay was written Thursday September 20,2012

My best friend, who also is disabled and struggles with her own chronic health issues, recently made a statement to me in reference to how I was feeling about unexpectedly not having health insurance. She said that for people like us, having your health insurance abruptly ripped away from you is like a person suddenly being laid off from their job. Those of us who are disabled or have chronic illnesses may depend on our health insurance every single day just like most people have to depend on having an income from a job every single day. Once that gets taken away from you unexpectedly, how do you feel?

Anxious.

Angry.

Fearful.

There is a long story to why I have lost my health insurance twice since July 2012 and when I have more energy and more answers, I will blog more about my experiences with the Social Security, Medicare and disability systems. Today, I just cannot because the system has me completely exhausted and worn done and I want this entry to focus on the miraculous thing that happened today. A thing that despite all the negative things we have to say about the health care system, the insurance companies, and the government, proves that there are good people out there who care.

The short version is this. I switched from my ex-husband’s health insurance that I was on as part of our divorce agreement to Medicare Part B July 2012 as I found out I was being dropped from his coverage. I had been eligible for Part B for quite a while but chose to stay on his as it had better coverage and was more affordable. I had notified all parties involved about my decision and took all the appropriate steps and was told that if and when I was dropped from my ex’s group coverage, I would be eligible for Medicare Part B through special enrollment which is what I did. Because of my extensive medical care needs and Sjogren’s specialists that are only located in CT (I live in MA), I also signed up for a Blue Cross Blue Shield (BCBS) PPO Medicare plan; known as a Medicare Advantage plan. This became my official insurance for everything. It cost a lot more for premiums, co pays, drugs, labs, etc. but was my best option at the time.

Social Security Adminstration (SSA) made a huge error and dropped my Part B in mid July which in turn dropped me from BCBS. To this day, nobody can explain the error. It was a fiasco. They still owe me large sums of money that they mistakenly took from my monthly SSDI checks. Errors they have admitted to but have yet to set straight. However the health insurance was put back in place after approximately two weeks and life went on.

I contacted Congressman’s John Olver’s office in western Massachusetts to assist me in getting this money back. They began to diligently work on the issue but meanwhile once again, without notice, my Medicare Part B was dropped in September without an adequate explanation except to be told there was a systems error. This of course prompted BCBS to drop me from their plan which is standard procedure, leaving me with no medical coverage at all. I had no notification except from my local CVS pharmacist who called to notify me that one of my refills did not go through because my insurance was denied and then a voice mail from SSA saying “you no longer have Part B, I don’t know why, and don’t know what to do about it.” I was unable to connect with my case worker at SSA however I was able to speak with the congressional aid at Congressman’s Olver’s office who started to follow through on the issue for me.

Meanwhile I was dealing with an exacerbation of my Sjogren’s syndrome which required an increase in medications and more lab work, an orthopedic appointment of a six month old sprained ankle that had gone bad, and an MRI. I started physical therapy for said ankle and then had to stop as I had no insurance and was worried the issue won’t get straightened out as by this point I didn’t understand what the issue was or what was going to happen next.

I have learned to handle stress very well. I have to with an autoimmune illness because stress just makes my symptoms worse. But not having health insurance puts me in sheer panic mode and I had my first panic attack in years. I became afraid to answer the phone or check the mailbox because it was always bad news that just made my situation worse and more frustrating. My days became filled with dealing with emails, phone calls, documenting every single thing said or done, working with health care providers and the pharmacy; the list goes on and on.

After several straight days of dealing with this, yesterday I heard back from the Congressman’s office who told me she got me reinstated in Medicare Part B but being the skeptic I am, I knew I would not feel sure about this until I called BCBS the next day to get reinstated with them because they would check the system and I would know for sure I was all set.

So today I called and sure enough, according to the system, I did not have Part B and could not get my BCBS back. I told the rep how I had to borrow money to pay for my medications yesterday and had to cancel appointments which was concerning since I just found out that my MRI showed a torn tendon in my right ankle. Also I had missed an important eye doctor appointment today. She promised me that she would flag my file and watch the system for my name to come through as maybe I went into the system late yesterday at SSA and might come through tomorrow morning. I knew better though. It wasn’t going to be that simple.

So I hung up and just cried. I asked God why can’t the people in charge just make this right so I can get the care I need and so I can not feel so riddled with anxiety to the point where I feel like I am on the verge of panic? Don’t they realize because of my health issues how vulnerable I am? I have utilized every resource I have. I prayed for the strength to just keep going.

And then the phone rang. I hesitated to pick it up because well, it’s always bad news lately. It was a woman named Judy from BCB. She told me that effective today I will be fully reinstated onto my BCBS plan. I told her that I had just spoken to someone from BCBS who said I wasn’t in the Medicare Part B system yet so that couldn’t be done. This woman said that yes, that is true what the previous woman said and that that same woman had then contacted her and that the priority to them is that I receive the medical care I need. And apparently she was the one that was going to make that happen.

I started to cry, a lot.
Because I had health insurance again.
Because I could get the care that I needed.
Because someone cared enough to go to the edge for me.
I was no longer just a number.
I was a human being.

She said my coverage will be retroactive to July 1st (as it should be) and she will check to make sure that none of my recent claims will be denied. She said she needs twenty-four hours to get my prescription coverage in place but to bring all my scripts, including ones I paid for out of pocket so far, to CVS and they will be covered effective tomorrow. She said to make sure I attend my physical therapy appointment tomorrow and to be assured that I now have medical insurance. She will deal with the rest. She was my angel.

This is what happens when God is listening and when you are fortunate enough to find your way to the compassionate people who work in the health insurance industry. Thank you Judy.

Addendum: I called Blue Cross/Blue Shield again today September 21st to reconfirm that I still have an active policy because well, it just seemed all a little too good to be true. And yes, I still have coverage. So today I am off to get a prescription and another much needed physical therapy session. God is good.

























































Photo Courtesy of Google Images

Drugs and Money

October 27, 2011 / / 2 Comments
“Competition makes things come out right. Well, what does that mean in health care? More hospitals so they compete with each other. More doctors compete with each other. More pharmaceutical companies. We set up war. Wait a minute, let’s talk about the patient. The patient doesn’t need a war.” ~ Donald Berwick 

I am more disgusted than usual with the health insurance and pharmaceutical industries lately. Health care in this country is dictated by politics and money which of course in no way benefits the patient. However in an attempt to turn negative experiences into constructive information that may help other people, I am going to try and make this a blog entry more about empowering other consumers and less about my rant regarding the terrible demise of health care in this country. Because except for being an active, registered voter, I feel powerless about changing the health care situation in this country. However I do have some control over figuring out how to get my medical needs met and then passing that information on to other consumers.

I have a prescription steroid inhaler that has a copay of $50 per month which is considerably more than other inhalers on the market. The reason I need this particular inhaler is because it is the only steroid inhaler on the market for my autoimmune induced asthma that has been documented to not cause a fungal infection of the mouth called thrush. When using previous inhalers, I have had a terrible time with thrush spreading into my esophagus and causing complications which have included difficulty swallowing. Then I have to take potent antifungal medication to clear the infection. Since starting this new inhaler (Alvesco), I have been thrush free. This new inhaler is much more expensive and I think part of this is due to the fact that it is the only one like it on the market.

$50 may not seem like a lot to spend on something that works so well, but it is when you are on a fixed income, you have at least seven other prescriptions, and you spend approximately twenty-five percent of your income on medical care every single month. An income that is only sixty percent of what it used to be three years ago. I am not revealing all this information because I want my readers to feel bad for me. I actually hesitate to reveal these details because sometimes people (i.e. my well intentioned brother) take these comments as a statement that I do not have enough money to survive. So let me just clarify that I can manage. We all have to make choices in life and I manage because I make my medical expenses a priority. I get by month to month because I always look for the best ways to manage my medical costs and I am very good at managing my finances. I manage month to month because I am fortunate enough to share living expenses with someone who is always looking out for my best interests. I am quite blessed because I have a family behind me who would never let me go without a necessary medication and would do everything in their power to pool resources to make sure I have what I need. I know that there are patients out there who have no health insurance and minimal available resources to them.

But here’s the thing. I am fiercely independent now. Although getting sick and incurring these medical expenses is not my fault, it is my responsibility to figure out how to pull my weight in order for my boyfriend and I to manage our expenses. So when my steroid inhaler dose got increased recently and the insurance company started charging me a double copay every month ($100), I couldn’t just sit by and say “oh well, that’s how it works.” Because I never know when another unexpected medical expense is going to come from around the corner.

So what did I do? Well, I started by complaining about it on Facebook. This was a good idea because there were people on my friend’s list who had some helpful suggestions. I also contacted my pharmacy to see if they had any suggestions of how I could avoid the double copay. I went to the website for the Alvesco inhaler in the hopes of finding some type of discount program for this medication. They had a great discount program which would reimburse up to $75/each month towards my copay. Too good to be true? Of course! In the fine print it stated that because of state legislation, only one state in the union was ineligible for the discount program and of course that state was Massachusetts.

This all brought me to this morning which is when I decided to call the doctor who prescribes the inhaler and see if he had any suggestions. I spoke with his nurse who was quite helpful. We discussed a few options and came up with a plan. She said she would put aside the last two samples she had in the office of the inhaler for me to pick up tomorrow. Although she didn’t have any samples two months ago when I was there, she had them now. Lesson learned: ALWAYS call your doctor to check for samples! 

These samples would get me through to my next appointment with my pulmonologist next month during which time we could try and figure out if there was a way to rewrite the prescription so I only pay one copay. What the nurse suggested next though was even more critical. The nurse told me to see if I could use a mail order pharmacy through my insurance company. I had used one of these a long time ago, but haven’t investigated this option since being diagnosed with the autoimmune disease because my medications were changing on a monthly basis. Mail order programs give you a three month supply of the same medication at a time and that wasn’t practical for me. Then I pretty much forgot all about it. Now I have several medications that are the same dosage for periods of time so I decided to check out this option.

As luck would have it, my insurance does have a mail order pharmacy called Express Scripts. To be honest, I did a Google search of reviews for them and those reviews were not favorable at all. However after reading their website, I decided that at this point, the amount of money I was going to save was worth taking the chance with this company. The process was very easy. I called their 1-800 number and told them I wanted to start up an account and see if my regular medications were covered. Because they work with my insurance company, they already had my drug and doctor information. They would call the doctors for a new prescription for a 90 day supply of each medication. I told them which medications I wanted, double checked the doses, doctor names, and doctor phone numbers. They told me how much they would cost and how the payment process works.

For four of my medications I paid a two month copay for a three month supply of medications. The exception was one of my thyroid medications which is on a special discounted medication list and only cost me $3/month. By the end of the phone call, I had saved 40% on five different medications. The other advantage is that all of my reordering can be done online and I don’t have to frequent the pharmacy as often. That comes in handy when you are not feeling well. I am sure there are disadvantages to the program, but I am going to remain optimistic and hopeful that it will remain to be as easy and cost effective for me as it was today.

So those are some of my tips for saving money on prescriptions. The biggest point I want to make sure that I make here is to use your resources as wisely as possible. Contact your pharmacy, doctor, and insurance company. See what options are available and make sure to be open minded to what resources are available out there.

What ways do you have to save money on prescriptions?

Final Diagnosis

August 12, 2011 / / 14 Comments
       When the world says, “Give up,”
       Hope whispers, “Try it one more time.” ~ Author Unknown
“When it is dark enough, you can see the stars.” ~ Ralph Waldo Emerson

It has been three years and eight months. That is forty-four months of doctor’s visits, difficult procedures, emergency room visits, and hospital stays. One hundred and seventy-six weeks of tears, doubt, frustration, and anxiety. And approximately one thousand two hundred and thirty-two days of hope.

Hope for an answer. An answer that will give my illness a name. One that will give me credibility. One that will take the place of a doctor who says “I don’t know” or “all your tests are negative.” One that once and for all, will allow me to go through life without so many unanswered questions about my body.

I got my answer this past Thursday at an appointment with my rheumatologist. It wasn’t really supposed to be a shocking answer to the big question of what disease has plagued me for so many years. The first mention that I may have an autoimmune illness called Sjogren’s Syndrome was about in 2009, when I was seeing my previous rheumatologist Dr. Monarch in Boston. The problem was that the blood work for the disease was negative and continues to be so to this day. However he felt that due to the nature of my symptoms and the fact that they couldn’t come up with another diagnosis, Sjogren’s was the likely answer. I even had a lip biopsy done to try and prove his theory as a lip biopsy was the diagnostic gold standard for Sjogren’s Syndrome. But of course, it came back negative and the only answer I had was that I could still have the disease with a negative lip biopsy which although rare, is possible.

Despite being told that there were no doctors in the United States that specialize in Sjogren’s, I found a rheumatologist in Hartford who specializes in the disorder. Within months of seeing this new doctor, pieces began to fall into place, pointing us in the direction of a diagnosis. I had a nuclear medicine scan of my salivary glands that was suggestive of Sjogren’s and within a few months of the scan, I began to have difficulties with my parotid and other salivary glands, which along with my other autoimmune appearing symptoms, made me relatively sure that we were on the right path after all.

But there was always doubt. The doubt began five rheumatologists ago (I have seen over twenty specialists overall) when the first one I saw looked at my very painful fingers/hands and told me he didn’t think this would turn out to be an autoimmune disorder because my hands weren’t swollen and my labs were normal. Doubt continued to grow doctor after doctor, test after test, as a prominent Boston pulmonologist told me that my breathing issues were in my head. Doubt plagued me as I would go sit in my car after each appointment and just cry. Cry because I was so frustrated knowing how sick I was and yet not being able to prove it most of the time. Cry because it was suggested that I follow up with a psychiatrist for possible conversion disorder and depression. Cry even harder because I did have a history of depression and was even told that I had bipolar disorder, only to find out from the same psychiatrist that he believed my mood issues to be related to the autoimmune disorder.

But yesterday I was vindicated. My new rheumatologist, Dr. Parke, had suggested to me months ago that I should consider a repeat lip biopsy. There was always a question for me (and possibly for her too) that because I did not have dry mouth as a symptom when I had the first biopsy done, that was the reason it was negative. After doing a lot of research through the Sjogren’s Syndrome Foundation, I was also concerned about the technique used to perform and analyze the biopsy when it was done the first time. There is a very specific standard used for taking the sample and analyzing it. Dr. Parke and her pathologist at UCONN had successfully done this numerous times before. We decided to go ahead and do the second biopsy. The results were not going to change much in terms of my treatment; Dr. Parke was still going to treat me as a Sjogren’s patient if the results were negative. However a positive result would make me eligible for participation in clinical trials if I so chose and the benefits for me mentally and emotionally were immeasureable.

I went into my appointment yesterday not even expecting the results to be ready as Dr. Parke had warned me that it could take several weeks. But the results were in. I had Sjogren’s Syndrome. And all I could do within seconds of her telling me that was cry. I cried again in the parking garage for a good ten minutes before I could even get back on the road and I cried on and off all the way home, as well as the rest of the evening. I was shocked. As much as I had hoped for an answer, I never expected to get one.

I never expected my response to the news to be that emotional. It was (and still is) this weird combination of relief, joy, sadness, and anger all at the same time. I am not even sure anyone can understand it unless they have been in a similar situation. I know with one hundred percent conviction what I am battling. I can look at my doctors differently because I am not always sitting there in fear over how they perceive me. I have credibility with the medical profession as a patient. I know without a doubt that I will be taken more seriously when I show up in an emergency room or in front of a new medical professional.

I don’t want this to sound like because of the diagnosis, I feel like I can now be identified or defined by my illness. I have tried for years not to let that happen and I am not about to start now. If anything, the opposite is true.

 I am free.

I am free from the questions and speculation. I am free from doubt. I am free from being a hostage to a medical system that frequently makes judgments of its patients just because they cannot find the right answers. Well, at least for now. Most importantly, I am free from myself. I can spend less time looking for answers and more time fixing what is wrong with me.

And yes, there is still a lot wrong with me. The sadness/anger aspect of my emotional reaction to this diagnosis is very real. When I heard the news Thursday, it brought back every bad memory I have had dealing with this illness over the past several years and trust me, there are many. It reminded me of how I let very educated professionals make me doubt myself at times. It reminded me of days, before anyone would even treat my symptoms, in which my mother had to help me bathe myself and go to the bathroom because I could not use my feet and hands to do it for myself. Of countless hours in the emergency room being poked and prodded. Of losing my job of ten years as a pediatric nurse because I could no longer get to work on a regular basis.

Yes, it is best for me to have a diagnosis but somewhere in the back of my head, I always hoped that someday, this would all just go away. All of it. I envisioned waking up one day and I would be symptom free and we would be able to look back and say we didn’t know what it was but now it’s gone. Unrealistic? Of course. But now I know for sure that will never happen. I have a chronic autoimmune illness that has no cure or even approved treatment for. I will have it for the rest of my life. I think that deserves a certain amount of sadness and anger, but not for too long.

That being said, getting that diagnosis yesterday was also a strong reminder of how far I have come and what kind of person I have evolved into. I no longer need my mother to help me shower every single day. I can leave my house most of the time when I need to. I am seen by a medical professional now maybe every two weeks instead of several times a week. I still cannot work, but when I am well, I am able to be of service to people in small ways. My life has a purpose other than being a patient.

I have used this adversity to become a much stronger and self-reliant person. I am bold. I don’t take my good days for granted. I live my days like they count because I never know when a bad day is going to come. Struggling for a diagnosis has taught me patience, courage, and perseverance. It has taught me greater compassion for others. The quest for a diagnosis has taught me that doctors are human; they are not God and therefore we cannot expect them to act as such. And probably most importantly, this experience has taught me the power of faith and prayer. For that, I am most grateful.

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