For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

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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.

Thoughts on Friendship

August 9, 2011 / / 3 Comments

“Life is partly what we make it, and partly what it is made by the friends we choose.” ~ Tennessee Williams





I have spent way too much time over the past two days trying to write a very poetic essay about the things I have learned about the topic of friendship. And then I realized it sucked. I am guessing it was because I was trying too hard. This is my revised essay because well, it’s better than not writing anything…

Ten years ago, my life revolved around my partner. Now my life revolves around my friends, family, AND my partner…

When it comes to friendship, always chose quality or quantity…

I remember the day I went to court to finalize my divorce, Nicole left her two young children with her mother and made the almost three hour round trip to meet me after court so I wouldn’t be alone…

It’s awesome to have friends that you are so close to that you can call then in the middle of the night about anything. But it’s also nice to have acquaintance friends. You know, the ones that with whom the deepest topic you delve into is about your concern over how your dog’s poop looks…

Becoming friends with someone is risky business. You’re putting yourself out there after all. Have a little faith and let down your guard…

We are not meant to go through this life alone…

Friendships nurture us. They can double your fun and halve your grief. I am not even sure that is grammatically correct, but you get the idea…

I remember Jen coming to my apartment and stocking my refrigerator as well as turning on my air conditioner in preparation for me returning from a very difficult hospital stay…

To truly be a good friend requires stepping outside of yourself even when it is not convenient for you. Even when all you want to do is take a hot shower and get into bed…

I remember when in the same weekend, my marriage began a rapid decline and my grandmother died, Steve drove two hours each way to come to my grandmother’s wake. He was the light in a very dark tunnel…

Social media is a wonderful tool for staying connected with friends. But nothing beats sitting across from an old friend at a table with a glass of wine and laughing about the good old days….like that time you wet yourself because you were drunk and trying to go to the bathroom in the woods. Not that I know anyone who did that…

I remember the evening that Tina and Lauren ran over from their dorm at UMASS after I called them hysterically crying because my dad told me my forty-four year old mother had ovarian cancer…

Don’t make toxic friends (please refer to previous blog entry: Warning: Toxic!). I know this can sometimes be tricky to figure out early on, but be on the lookout. If every single conversation reverts back to them or they constantly suck the life out of you, time to run for the hills…

Being a good friend is much more important than just having one. Thank god I have a few who taught me how to do it right…

In honor of those who hold our hand, dry our tears, refill our beer glasses, and drive us home to keep us from acquiring an arrest record, please consider taking a moment to share a memory of something special or significant a friend did for you.

Love Knows No Age, Or Does it?

August 3, 2011 / / 13 Comments
    Age is an issue of mind over matter. If you don’t mind, it doesn’t matter.” ~ Mark Twain
I somehow got myself involved in a conversation about age differences in relationships earlier this week. Well, not really involved because I felt, let’s say, slightly uncomfortable. The scenario was that I was in a social situation and this couple (we will call them Mr. and Mrs. X to protect the innocent) was talking about their daughter’s new boyfriend who is about seven or eight years younger than the daughter. Her mother expressed some concerns over that, which in turn, led to a larger brief discussion about age differences in couples. I was quite surprised to hear the father of the daughter voice his opinion about how a large age difference is not good in a relationship, especially when the couple is older. I am not sure what his rationale was and he didn’t elaborate on that particular statement because his wife chimed in about how she agrees with him and then subsequently voiced her own opinion about the issue until all of a sudden she stopped herself and changed the topic. I don’t know this for a fact, but I am guessing that the conversation ended abruptly because maybe she remembered the fact that once I told her that my boyfriend is fourteen years older than me. And I was standing right there. And he was within earshot’s distance of the conversation. Or maybe I was just being paranoid.
Regardless, I adore this couple and wanted to participate in the conversation with my two cents about how love knows no age because look at my boyfriend and I, we are making it work. I didn’t say anything though for one reason and one reason only. I am still in the stage of this relationship of figuring out what topics are sensitive and which ones are acceptable to spout off about in public. I didn’t really think it would be an issue to discuss this topic with friends, but I have been known to make incorrect presumptions in this past, so I figured better safe than sorry.
So now I and you the reader as well, are left with the question: does age matter when it comes to love and relationships? The reason that I was surprised about this friend’s comment about age mattering as you get older was because usually, many people only take issue with an age difference in relationships when it comes to younger couples, such as with his twenty-three year old daughter. For example, an eighteen year old girl dating a thirty year old year old man. Or a twenty-one year old man dating a forty year old woman. I have had discussions with friends throughout the years and the common theme that comes up is that the people in these relationships are at different life stages, which could be a problem for the relationship in the future.
Being the romantic that I am, I never gave too much weight to the whole “different life stage” issue.  Before I used to think that if you’re in love, you’re in love. As long as it is legal. There are much bigger potential issues in relationships to deal with than a large age difference. Alcoholism, abuse, infidelity, the list goes on and on. I have close friends who are twelve years younger than me and I have close friends who are thirty years older than me. Why should my best friend (also known as my partner) be defined by the boundaries of their age?
Now that I am seriously involved with someone who is quite a bit older than me, I have been able to see the flip side of the coin. Age can make a difference in a romantic relationship. I want to sit here, dig my heels in, and say it doesn’t matter. Love conquers all! But the reality is, you can’t bury your head in the sand. You have to be realistic. A significant age difference in a relationship can and does result in many obstacles or issues. Goals can be different. A fifty-two year old woman may be planning on how she can retire early while her thirty-seven year old partner is at the height of his career. For many people, health issues start to arise as they get older and the chances of being a caretaker for an ailing partner is dramatically increased with a significant age difference. There is also the issue of children. One partner may be thinking of starting a family while the other, who may already have adult children, has already been there and done that. Maybe these are the kind of issues that my friend Mr. X was referring to.
I guess like many other debates in this world, there is no right or wrong answer to the big age debate. I cannot tell a lie; I have thought about the age difference between my boyfriend and myself, mostly because it has brought up some questions for us to answer. Questions that many other couples who do not have a big age difference also have to grapple with. The thing is though, I think that a big part of having a healthy and loving relationship is just that. Facing issues, talking through them, and compromising when necessary. That is not to say that facing and dealing with all those issues will always result in a happily ever after story. But living in denial is certainly not the answer either. Sometimes in the end, these conversations can even make your relationship that much stronger.
The conclusion I have come to is that if you are lucky enough to find true love, you have to grab it and embrace it. Work through the tough questions if they come up. Don’t define love by the number of years between you, but rather by the truly important qualities such as friendship, communication, respect, goals, and dreams. Because in the end, those aspects of your love will be the ones to get you through your journey and quite possibly, to your happily ever after.

Unplanned Journey

July 28, 2011 / / 10 Comments
“A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us.” ~ John Steinbeck

I am a planner. I have been my whole life and to be honest, sometimes I border on the mildly obsessive side when it come to planning things. There are huge advantages to knowing what you are going to do and when you are going to do it, or so I have always thought. For me, being a planner has meant having control and therefore avoiding all the potential disasters that can occur. Take a trip or vacation for example. Make your reservations, get your route all mapped out, figure out what events are going to be included in your trip. Nothing can go wrong then. Yeah, right. Reservations get lost. Road construction delays your driving trip by hours. And horrors of all horrors, it rains the whole time you are on your well planned trip!

Now, my partner in life, love, and adventure (AKA boyfriend Chuck) is the antithesis of a planner. For years, I have wanted to be able to relax and not have to plan every single second of every single day and over the past two years or so, I have become more laid back. When we started dating though, I thought for sure his fly by the seat of his pants approach to many things would cause quite a stir in our relationship because of the fact that I just didn’t feel comfortable going through life like that on a regular basis. See, oftentimes he can plan for really important events such as say, Christmas or my birthday, but otherwise, not so much. He approaches it more like the fact that tomorrow is not here yet so most planning does not have to be done far in advance. For example, we had a large Fourth of July cookout this month. I started making lists and organizing about two months beforehand. Extreme? Maybe. If it was up to just him, planning would have begun the day (or maybe a few days) before. And you know what? The cookout probably would have been just as successful either way. However for me, it alleviated a lot of the stress and anxiety to start planning far in advance.

However since we are both in this relationship for the long haul, compromise has to be made. He has worked on doing some planning ahead when the situation warrants it, compared to his pre-Christine days; which of course I think is never a bad thing! In return, I have been trying hard as hell to be more spontaneous. Not an easy feat, I must say! It has been quite a learning process and one that I think is helping me to grow as a person.

I realized how far I have come along in regards to this issue recently when we were planning a three day weekend to the beach in Maine. It did require a bit of forethought as we have a dog that we need to find a sitter for while we are away. So we picked out a weekend according to Chuck’s work schedule and the dog sitter’s schedule. We decided we were going to Old Orchard Beach in Maine. We talked about a few ideas of what each of us would like to do while we were there, but that was really only because we were so excited to go. And…that was all the planning that was done.

I suggested making a hotel reservation since it was the middle of the summer in a beach town and on a weekend to boot. Ohhh no. Chuck said he always just drives up there and finds a place to stay. I thought he’d been smoking some crack earlier that day.

“You can’t do that!” I told him.

 “What if we don’t find a vacancy?”

He reassured me that we would indeed find a place and the reality was, I trusted him. Something would work out. If it didn’t, then I could say I told him so. Just kidding; alright maybe not. Then I started thinking about how exciting it would be to go up to Maine without having any idea of where or what kind of place we were going to stay at. We had taken a trip up to Vermont a few months ago and although we DID have reservations for that trip, we ended up making stops on the trip there that we hadn’t planned on and oh, how many great things did we see! Worst case scenario would be that we would stay further on the outskirts of town or end up in New Hampshire. I could do this!

Off to Maine we went with no reservations and no day by day itinerary set. We would just go and do what the mood struck us to do. I have to say, it was one of the most relaxing and enjoyable weekends I have ever had. Shocking for me considering the complete lack of planning that went into it; according to my standards anyways. Not only did we find a vacancy on our second attempt after driving into town but we found a quaint and picturesque inn, called The Gull Inn, located right on the beach at a somewhat decent rate. We went on the beach when we wanted. We ate as early or as late as we wanted. I found myself not really caring what time it was. I realized by the end of our journey that despite not scheduling a single thing, we still got to do what each of us wanted to do which was basically be on the beach, take photographs, read, play arcade games, eat, shop, and go to an amusement park.

Because we did not plan our weekend and did some exploring, we also got to experience things that we didn’t anticipate. Besides finding our great little inn, we went to a larger amusement park on the trip home. We found a wonderful discount bookstore in town. I, Ms. “It Takes Me Two Straight Weeks Every Seven Years to Find a New Bathing Suit”, found a wonderfully flattering bathing suit at a store. I wasn’t even PLANNING on looking for a suit that weekend.

There were also other things that I did not anticipate discovering while we were flying by the seat of our pants that weekend. Such as, I don’t have to try and be in control of the universe, or even myself, twenty-four hours a day. Moments are best experienced when you are fully in those moments and not thinking beyond them. I discovered that even if we had difficulty finding a place to stay, I have enough faith in Chuck and in the two of us as a couple to know that we will be alright no matter where we end up, whether it be on a trip to the beach or in the journey that we call our life together.

The kicker of the weekend came when we were driving back from Maine and decided to stop at that amusement park, Canobie Lake Park, in New Hampshire. I had not been to an amusement park in at least twelve or thirteen years. I was excited and couldn’t wait to experience everything. We parked our car and got in line to buy tickets. We handed the tickets to the person working at the front gate and as we walked through through the turn sty, I picked up one of their free park maps to figure out what was there and where we wanted to go since it was my first time. Then a lightning bolt thought struck me. Looking at the map would take away from the adventure and surprise of it all. Within literally ten seconds of picking up the map, I had thrown it into a trash can, almost like it was on fire. I am not sure who was more shocked, Chuck or me. And then with a smile on my face, we took off walking aimlessly through the park, never knowing what adventure was going to be around the next corner.

Photos Courtesy of Chuck Myers

In Sickness and In Health

July 20, 2011 / / 13 Comments

This week’s big revelation for me: it is easier to be sick when you live alone than when you live with another person. Disagree? Many people would. They would retort that it must be a lot easier to have the support of someone living with you when the going gets tough in the medical department. I cannot really disagree with that on some levels but on others, I feel like this week I can; even when you live with the most compassionate, patient, and nurturing man God has ever put on this face of the earth.

So why would I complain? Well, I am not complaining, just stating some facts. I am also not implying that I would ever want to change my living situation, so no rumors please! When you have a chronic illness, you live in a state of constant unpredictability. As I talked about a bit in a recent blog entry entitled False Assumptions, there can be days and even weeks where life just goes along relatively smoothly. You take your medications, keep your routine appointments, and manage your chronic symptoms as best as you can. However then there are days or weeks (maybe even months) where it is one constant battle after another.

Since about May or so, I have had one new issue after another to deal with in regards to my autoimmune illness. Hearing loss, dizziness and headaches started off this episode and now I have developed issues with my salivary glands which have resulted in pain, difficulty eating, more horrendous headaches, and just general discomfort. Add in a new round of steroids which are messing with my weight and to a small extent my mood, as well as some concerns about swelling near my lymph nodes (I am also a lymphoma survivor) and it is the perfect recipe for stress and exhaustion. I am mentioning all this not as a request for a pity party from my readers, but to lay the foundation to explain why it is sometimes easier to live alone. This is the most complicated my health has been since moving in with my boyfriend six months ago. I don’t just have myself to think about anymore when the going gets tough.

And that is what scares me. See, when you live with someone and are as connected to that person as I am to him, you can’t hide your little medical crises that well. I know, I know, you shouldn’t want to downplay that kind of thing from your significant other anyways. I can’t help but think that it would be so much easier though if I could. Why would I want to? Because I don’t want to bring him down. It can be exhausting to live someone who is physically struggling day after day for any period of time. Even despite my best efforts, the medical business can consume my day and our conversations. I guess it is good that I can step out of myself long enough to realize that. I know he is an adult and can take care of himself, but because I love him, I want to protect him; even if that sometimes means protecting him from me. Because when the autoimmune monster rears its ugly head, I just don’t have much to offer anyone and my boyfriend deserves to have someone who is emotionally and physically available.

The other point is that when you live alone and are dealing with an onslaught of medical issues, you can hide. Just pull up the covers and let yourself wallow in self-pity. Shut down from the world. To be honest, I don’t do that too often but when I do, I go all out. I put a special blanket on the bed for the dog so we can snuggle, grab my books, laptop, and TV remote to make sure they are not more than an arm reach away. I don’t answer the phone. It usually only lasts for a day or so, but I think that it can be necessary to give in and let myself emotionally (and physically) recharge. That day or so is actually a self-imposed time limit whether I am ready to face the world again or not. I know from firsthand experience that falling into a depression is only a few extra self-pity days away.

Here’s the thing though. I don’t want somebody else to actually witness me doing that! Oh no; I am a strong and courageous autoimmune-fighting warrior. I cannot let someone see me vulnerable! I have to protect the world! Yes, I do realize what bullshit that is now but like with everything else, figuring this out is a work in progress. More accurately, US figuring it out is a work in progress. We talked about all of this quite recently and here is what I (we) figured out:

~ It is not always my job to protect people that I love when I can barely take care of myself.

~ Trying to down play how lousy I am feeling or how scared I am with the person I live with serves only to alienate him, therefore making me kind of an idiot. We are only as strong as our communication with each other.

~ I am not sick three hundred and sixty five days a year. My turn will come to be there for him if I haven’t done so already. Now that I think about it, I have; he’s not always good at doing dishes before going to bed!

~He has some pretty strong views about not letting me wallow in any form of self-pity for ANY period of time. I think that is a very good thing in many aspects but I also sometimes think it’s necessary as I explained above. We will have to find middle ground on that one unless I make myself limit it to the span of his workday…ha!

I would love some input on this issue from those of you with medical issues who cohabitate with someone or live with someone who has their own medical issues. Be honest because chances are, you are not alone…

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