For Everything There is a Season

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

Category: obstacles (Page 1 of 2)

The Smell of the Sheets

March 20, 2013 / / 10 Comments

I went to lie down on a stretcher this morning and as I got comfortable on my back and waited for the radiology technician to come back in the room, I was struck by a smell. A familiar smell. One that prompted my brain to flash various images through my head, one right after the other. Images of different procedures, some painful and some not. Images of myself sitting in a hospital bed in various rooms throughout this particular hospital where I was having my test done. Images of  emergency rooms where I have sat.

What was this smell? I finally realized, while laying on the stretcher this morning, that it was the smell of the hospital sheet covering the stretcher. All of a sudden, I realized that the smell of the hospital sheet is as commonplace to me as the smell of fresh baked cookies or bread to someone else. It is very distinct. The smell was representative of all the stretchers I have laid upon in the past several years. There are too many to count. The sheets have laid below or on top of my struggling body as I have tossed and turned in the middle of the night in my hospital room, while I have vomited on an emergency room stretcher, and while a tube has been put down my airway and into my lungs during a procedure. The smell of the sheets symbolizes my life as a patient.

I realized as I was laying there this morning that I had not smelled the sheets in exactly three months, which is when I had my last procedure or test done, excluding laboratory tests. This particular test on this morning was an ultrasound of my kidneys and bladder and was painless, as well as easy for me. Basically a walk in the park. No needles, no gagging, no fear of the unknown, as I have encountered with so many other tests and procedures throughout the past few years. But the smell of the sheets reminds me of those times and the struggles I have had.

Last fall I made a very thought out decision to see a therapist/counselor who has a specialty in seeing people with chronic illness. I was at the point where I felt like I needed some help in learning how to cope with my illness and the multitude of issues surrounding being forty-one years old and disabled. I did not like the fact that my illness seemed to consume most of my conversations with my fiancé, friends, and family. I was finding it harder and harder to discuss anything else besides my symptoms, treatments, fears, and anxiety. I wanted more out of my relationships than that. Easier said than done when you have an illness that you are physically aware of almost every minute of the day. It wasn’t that I did not want to learn more about Sjogren’s, continue my book about it, or socialize with other Sjogren’s sufferers, but rather I wanted to find a way to have Sjogren’s be a part of my life instead of the focus of it.

I was also starting to struggle with significant anxiety in relation to upcoming procedures and I was having nightmares about them as well. Not surprising considering what I have gone through in the past couple of years and even before that with my lymphoma diagnosis, both in regards to procedures and medical experiences in general. I have had incisions made in the tops of my feet and had thin wires threaded up along the lymph vessels of my legs. I have woken up during a bronchoscopy because I was not properly sedated. I have had scary experiences with my heart in the emergency room and honestly thought I was going to die. The list goes on and on.

So I have been working diligently with this therapist. I have not mentioned, previous to this posting, this fact to many people. Actually only my fiancé, parents, and minister have known. I have not kept it to myself because I am embarrassed about seeing a therapist, but I guess I did not want people to know exactly how much I do emotionally struggle with having this illness. I want to be viewed and known as a warrior; a person who can handle all this illness business without much difficulty.

Yeah, I know. That’s crap. It’s the people who know they need help that are the warriors.

I have realized recently how much working with this therapist has helped me. Many times when people have trauma issues of any type, there are certain triggers that can bring back memories and feelings surrounding the traumatic event. For me, sometimes it is the smell of the sheets. The smell that brings back those images and reminds me of the pain, fear, and uncertainty that surrounds each difficult medical event. But this morning was much different when I recognized the smell of the sheets. When the smell prompted me to play back some of the difficult procedures and medical experiences I have had, mostly over the past year, I did not have the anxiety. Rather, I remembered them just as events that took place. Events that are a part of my journey. Were the events unpleasant? Yes. But the memories no longer haunt me while I sleep.

Therapy has also made a difference in my interpersonal relationships. Sjogren’s is still a part of my conversations at times. It needs to be as it is part of who I am. However I have recently found myself able to consistently focus on other aspects of my life in conversations and dealings with others. Because despite my continued physical struggles, I no longer think of myself primarily as a sick person. Instead, I think of myself as a person who has an illness. There is a huge difference. That difference actually made me realize something about one night last week. I had attended a social event with my fiancé and five friends that lasted about four hours. Not once in that time of conversing and socializing did the topic of my health come up. That is a very good thing. Not because I don’t ever want to talk about it or have people ask how I am doing but because it means that I have been able to have a life outside of Sjogren’s.

The smell of the sheets this morning transported me back in time to my struggles, but not to my anxiety and fear. This time the smell was a strong reminder to me of my strength and my ability to endure. It reminded me that yes, I am a patient. But that is not all I am. And so I have chosen to share this experience with you. To remind you that you don’t always have to be brave and you don’t always have to be strong. It is OK to ask for help. It is OK to be human.

Hang On As Tight As You Can

December 27, 2012 / / 3 Comments
 
 
“I’ll lean on you and you lean on me and we’ll be okay.” ~ Dave Matthews Band
 

It is the day after Christmas and I am sitting here thinking of all the blog entries I want to write. My writing has taken a nose dive recently for a variety of reasons and I can always tell when it has been far too long since I have done any writing. Whole sentences and paragraphs start to form in my head in the middle of the night when I am fighting my enemy, the evil insomnia. Or I will be having a conversation with someone and sometimes find my mind wandering to all the thoughts in my head that I want to get written down.

Today is my day to get my mind and spirit back to my passion. To be honest, over the past month or so, I have been so distracted and overwhelmed, that I couldn’t even concentrate long enough to put all of those sentences and paragraphs together. But like so many other times, it was my fiance, Chuck, who gently reminded me with one of his Christmas presents, that writing is the one of the things in this world that I need to do.

He is so good like that; paying attention to what is going on with me and supporting me. I used to worry that because of my illness, he gets the short end of the stick, having to be the strong one more often than not. We have only been together a little over two years and we have endured our share of challenges, in regards to life, my health and, as all couples do, our relationship. Usually though when some type of challenge faces one of us, the other person is in a good enough place to be a strong support. But then what do you do when:

One of you gets so sick that you are hospitalized for five days. And more testing and uncertainty follows.

One of you is having a lot of stress at work.

Your dog gets sick enough to require four vet visits in one week and multiple tests.

One of your cars breaks down.

One of you has been hurt by someone you love and trusted.

One of you is faced with the possibility of another autoimmune illness.

One of you has a sister who undergoes life changing surgery.

One of you is told that you have a growth on your gallbladder that has a remote possibility of being malignant and you have to make a decision about whether it is worth the risk of surgery.

Christmas is fast approaching.

One of you is told that your mother is dying.

And all of this happens within the time frame of one month.

So what do you do? What do you do as a couple with so little time under your belt when both of you are stressed beyond limits that you think you can handle?

They say that love conquers all but I am not sure I agree with that anymore. Rather, I think love, friendship, determination, faith, compassion, selflessness, and most of all communication conquers all. Because once you are committed to someone, experiencing crisis is no longer a solo event. You have to be able to not only support your partner in their struggles, but deal with your own feelings as well. It is easy to get caught up in your own challenge of just getting yourself through the day, but it’s no longer just “your” day. The day belongs to both of you.

I cannot speak for my fiance but for myself, in the past month, if I was trying to be there as a support for him, I rose to the occasion. Almost to an extreme. If I knew he was stressed out and then asked me how I was doing, I would sometimes downplay something going on with me. I think there is a time and place for that, depending on the seriousness of what which each person is going through, but I am here to say that for the most part, it doesn’t work well. Because he knows me so well, he then worries more. Being a martyr for your partner’s sake is not the answer. Open and honest communication is.

We are by no means on the other side of the current challenges that we face and we may not always get it right, but I can say what has worked well:

*We ask each other “how are you today?” It seems like such a basic question but if you are in a relationship, think about the last time you actually asked your partner that question.

*By sitting down together, we have learned to prioritize the most immediate needs of the week, day, and even hour. It may be him traveling to Boston Christmas morning to spend time with his mother, knowing that I physically can not make the trip that day. It could be me doing some Christmas shopping for him so that he is freed up to deal with other things.

*We make sure we connect as frequently as possible and make each other the priority right now. I will actually consciously have to stop whatever I am doing sometimes and make sure that I have not been so wrapped up in my own problems and stress that I have not made myself emotionally available. On the flip side, I will also ask him if he needs time alone.

* Make sure we laugh together every single day, at least once.

* Depend on other people. Historically, both of us are terrible at this and the events of the past month have taught us that not only is it okay to ask for help, but that you also need to know who you can depend on for help. Especially when you need a listening ear. One human being cannot be all things to another.

Finally, and maybe most importantly, we hang onto each other as tight as we can.

Another Stumble, Another Step

October 21, 2012 / / 6 Comments

I love to write.
In case that wasn’t obvious.

I had the opportunity yesterday to attend a writer’s conference called WriteAngles at Mount Holyoke College in Massachusetts. It was my second time at the conference and I was not disappointed. It is such a high for me to be surrounded by so many writers and readers. I love the energy. I love the opportunity to learn. I love the fact that I get to step outside of the isolation that I sometimes experience as a writer and instead be able to engage with those who share my passion. 

I had a lot of physical challenges facing me going into the conference this year which is partly why I have not been blogging as frequently. My Sjogren’s symptoms kicked into high gear a few weeks ago and this resulted in a significant increase in doctor’s appointments and major changes in medications; not to mention feeling like hell due to pain, fatigue, and issues with my eyes. It has probably been one of the worst flare ups I have experienced in my illness since its onset four years ago.

This wasn’t just an opportunity to attend a writer’s conference though. I also had a ten minute, one on one meeting scheduled with a literary agent at this event yesterday. It was an opportunity I had known about back in December of last year when I started writing my book Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjogren’s Syndrome. I made sure that I signed up for the conference the day registration opened up in order to ensure one of those coveted agent meeting slots. I spent weeks learning how to write a good query letter. I researched how to do a book proposal in case one was required for my particular book. While sitting in doctor’s waiting rooms over the past few weeks, I would be emailing back and forth with other story contributors for the book in order to get the manuscript complete.

Now I had never been to one of these meeting before, but the impression I got from the person coordinating the meetings and from doing a bit of research online, it seemed like the purpose was to review your query letter, discuss your book and have the opportunity to ask questions. I was not expecting to walk out of that meeting with a literary agent. Not because I don’t have confidence in this book. I do. But because I knew that it was my first time at the rodeo so to speak. This was more of an opportunity to introduce my work and if I was really lucky, maybe spark the agent’s interest. I was expecting to get some valuable feedback about my book and learn something to help me figure out the next step in getting this very important book to the next level.

By the grace of God, my symptoms started to settle down forty-eight hours before the conference. The day before the conference I was by no means back to the physical state I was in a month ago, but I was definitely able to get myself to Mount Holyoke College, which is twenty minutes from my home. I thought I could manage going eight hours without pain medication and then hopefully be able to focus, function, and act intelligently for eight full hours; without a nap or rest period. I would probably require at least several days to recover from the experience. My medical needs had increased over the past two weeks and I meticulously planned my medications, eye drops, inhalers, and water needs (due to extreme dryness from Sjogren’s) around the conference schedule. My writing bag was packed, accompanied by my medical supplements. I had researched my agent. I knew what I was going to say.

I was ready.
I was excited.
Game on.

Thirteen hours before I am to leave my house, it is seven o’clock in the evening and the phone rings. I see the caller ID and the name of the person coordinating the agent meetings flashes at me from the phone, daring for me to answer. I knew. I just knew. I get through the conversation, barely.

The agent I was supposed to meet with was sick and all of his meetings had been cancelled.

Some people would stop reading here and say OK, so what? It was just a ten minute meeting. Send the query letter to another agent. Or maybe he will read the letters at another time and then get in touch with you when he is feeling better. But in those moments following the motion of hanging up the phone, all I could feel was profound disappointment. All I could think of were the hours I had spent in bed, while so sick, writing this book. The obstacles I had overcome to even be able to get to this point with the book. The disappointment I felt over not having the experience of meeting with an agent.

And within minutes, the negative thoughts were gone.

He was sick.
I know about sick.
I know about not having control. This was out of my control. What was in my control was how I was going to handle it.

I changed my mindset. This agent, on this day, was obviously not the path for me or this book right now. I decided to keep faith and move forward. I was still able to go to the conference. I was still going to be able to meet and enjoy the company of other authors and learn more about my craft. I was going to have the opportunity to immerse myself in the literary world that I have come to love so much.

And so that is what I did. I met new people. I learned new things.The speakers were tremendous. I was especially touched by the keynote speakers Maria Luisa Arroyo and Ann Hood. Both of their stories touched me in a way that few ever have. Both made me cry. In both of them, I saw what it was like to have the soul of a writer and how a writer can effectively use their life experiences to make a dramatic impact on the lives of others.

I am sitting in the second morning panel session called Going Beyond the Personal in the Personal Memoir. It is 11:53. I know this because a woman comes into the conference room with a clipboard. She announces that she is looking for the following three people who will, due to a variety of reasons, unexpectedly have an agent’s meeting after all on that day. They are to go upstairs at noon. I sit there and remind myself that there had to be at least ten plus people who had their original meetings cancelled. It will not be me.

She speaks.
I am name number three.

The chain of events that followed after that felt frantic to me. I am not the most spontaneous person in the world. I did not know which agent I was meeting with and she had not had the opportunity to even read my query letter until I sat down in front of her. I remember telling myself to breathe and relax so I could make the most of the experience.

It was a much bigger experience than I imagined. She thought the query was really good and that a publisher would pick up the book. What? My book? We discussed what the next steps would be. Then she is telling me to submit the query letter to her at the agency with a book proposal. Excuse me? I am the one who came here with a cancelled agent’s meeting and now you are requesting a book proposal?

THIS was how it was supposed to unfold.

I don’t know what is going to happen. I may submit the proposal and it will be rejected. I may submit it and it will be accepted. What I do know with absolute certainty is that no matter what, my book and I will travel our path together until we have reached our destination; wherever that may be.



















































































Photo Courtesy of Google Images

Crossroads

June 14, 2012 / / 6 Comments

I feel like I am at a crossroads in regards to my health, nutrition, and exercise lately. Merriam-Webster dictionary defines the word crossroads as: a crucial point, especially where a decision must be made. I am not certain that my decisions are necessarily crucial but you get the point.

Over the past two months I have slowly been weaning off my prednisone which was at very high doses to begin with between the oral tablets I was taking and the IV infusions. I finally came off of it three days ago. I knew it was going to be difficult. Historically I come off prednisone for a while and then ultimately go back on it at varying doses because my symptoms return. However this time I am determined to stay off of it for as long as I can unless I am in a very bad or urgent situation such as literally not being able to walk or if I am having extreme difficulty breathing. The reason I feel so strongly about staying off the prednisone is because I am forty-one years old and I believe that my doctor and I need to try another course of treatment. The risk of long term side efefects is high. Not to mention the ones I have to live with when on the medication. It is a toss up most of the time as to what is worse: the disease or the treatment. At this point, it has become a quality of life issue.

But I am in a lot of pain. The joint pain that notoriously feels like someone is driving a chisel into my bones. It is not the worst pain I have ever had but it is pervasive and it is starting to affect my daily life again. I know that if I call my rheumatologist, she will immediately put me back on the prednisone and I just can’t do that to myself again right now. Also, the adrenal gland gets shut off when you are on prednisone and they need time to work on their own again. While this rebalance is taking place, it is common to have symptoms like joint pain. I am hoping that this is all this pain issue is: a response to coming off the prednisone.

I am also at a crossroads with my exercise program. While I was on the prednisone, I was able to do a lot more than I can now. At this point, I cannot even swim without being in significant pain afterwards. And this upsets me. I have come to rely heavily on regular exercise to not only manage my weight but also my emotional well being. I am currently reevaluating the exercise program I have put in place to see how I can work it so that I can still exercise without paying such a heavy price afterwards. It is difficult though when I have made so much progress over the past two months in regards to my fitness level. All I want to do is keep going forward, not backwards.

The final issue to my diet. I have been working so hard on changing my lifestyle over the past six months and my dietary changes have been drastic. And now I am ticked off. Why? Because I have busted my butt for the past five to six months eliminating all gluten and dairy from my diet. I have drastically eliminated sugar as well. I did these things because it has been shown that gluten, dairy, and sugar can contribute to inflammation. I have sacrificed a lot to make this eating plan work for me and yet as I sit here typing, the joints in fingers are swollen and painful. I know I may be jumping the gun a bit because once my body chemistry evens out, maybe the pain will be better. But it is hard to not be discouraged when I had a lot of hope placed on my dietary changes making a huge difference in my illness. Not to say that it won’t but time will have to tell on that issue.

So what do I do now? Do I give up my gluten and dairy free diet? Do I let myself start having sugary dessert more often? Do I just sit back and use my pain as an excuse to not exercise as often or even at all? Most importantly, do I go back to my medicine cabinet and give in to the pain; knowing that relief may just be as easy as a 10mg tablet of prednisone?

Hell no.

Here is what I am going to do instead. I am going to go to acupuncture more frequently. I will keep reading and learning about pain management techniques and use them as much as possible. I will eat even healthier than I already have been. I will use regular pain medicine when I need to give my body a break from the pain. And I will still exercise. I am not quite sure how but I am resourceful. I will figure it out.

The most important thing I will do is….

Not give in.

I will fight to be stronger than this current flare up of pain. I will not use my illness as an excuse to eat crap or be a couch potato twenty-four hours a day. However, I will also be kind and gentle to my body in whatever ways it need me to be. I will have faith that this too shall pass. One day and one hour at a time.

Photo Courtesy of:  Image Crossroads (C) by www.martin-liebermann.de

Trusting My Body Again

April 12, 2012 / / 12 Comments

“Movement is a medicine for creating change in a person’s physical, emotional, and mental states”. ~ Carol Welch

It is two o’clock in the morning and I have to go to the bathroom. I try to get out of the bed and realize that I cannot physically get my body to sit up. I am too weak and don’t have the strength to even get myself to the edge of the bed. I wake up my fiance, who was probably half awake anyways, so he can help me get out of the bed just to use the bathroom. I am frustrated and scared.

Three months go by.

It is eight o’clock in the morning and I am staring down a very large machine called a cross trainer. Seems like the biggest bang for my buck as it will give me a good cardiovascular work out with minimal impact on the already painful parts of my body. I expect to last three minutes on it. I start and my legs and arms just keep going and going. I am on it for twenty-five minutes. I am exhilarated.

I have won.

I found out three months ago that in addition to having Sjogren’s syndrome, I was afflicted with a neurological disorder called Guillain-Barre, which was causing severe body weakness, difficulty walking, and severe pain to the point that I wished I was dead. Even the simplest of tasks was difficult. Guillain-Barre arrives like a freight train, does its damage, and leaves. I was extremely lucky that I had a milder version of it and was started on steroids relatively quickly which may have lessened the blow of the illness. I was never completely paralyzed and did not end up on a ventilator like some people do. I still count my blessings every day about that.

I have been working my tail off ever since January to get better. I already had several strikes against me due to the Sjogren’s syndrome and the Guillain-Barre, along with some blood clots in my lungs; all of which presented more obstacles in my recovery than I knew what to do with. Physical therapy was, and sometimes still is, brutal and exhausting. In addition to all the previously mentioned diagnoses, I was also diagnosed with occipital neuralgia in February. This has resulted in severe head pain and headaches. Yet another obstacle. Or an excuse, depending on how you want to look at it.

But even on my worse days, I stuck with the physical therapy and as the weeks progressed, I started to notice a significant improvement in my strength. I no longer fell over when I crouched down to get a pot or pan out of the lower kitchen cabinet. I could lift a plant above my head again. Taking a shower was a routine task again although I must admit, I don’t take my ability to do that for granted anymore. Come to think of it, I don’t take my ability to do anything physical for granted anymore.

My most recent goal in physical therapy, besides getting the occipital neuralgia under control, was to get back into the gym. I was exercising in one way or another before this whole fiasco began in January which to be honest, is no small feat because of the Sjogren’s syndrome. I am frequently plagued by joint pain, muscle pain, neurological pain, breathing difficulties, and the list goes on and on. Some days I would go to the gym and some days I would take a walk with my dog. I was usually not exercising to the point of winning any marathons, but I have found that pushing myself to get physical activity whenever possible has been helpful with my Sjogren’s symptoms; provided that I do it within reason. Not to mention all the other excellent health benefits.

I had been going to a Planet Fitness in town and had decided that instead of renewing my membership there, I was going to try a different gym that had a pool. My reason for this was that my Sjogren’s issues were occurring more frequently and if I had access to a pool, I may be able to get exercise in the pool on days that I would typically be too sick to exercise. It would be less impact on my joints. Problem was, I was hit with the Guillain-Barre before I had the chance to join this new gym. I was recently cleared by my physical therapist to get back to the gym. Unfortunately I had a fall three weeks ago and still have an open wound which will keep me out of the pool right now, but there were so many other things I could do at the gym besides swim.

If I could just get the courage to go.

Here’s the thing: I was scared. I felt comfortable at my old gym. It was simple and familiar. There has been so much upheaval in my life over the past few months with my health and I find that I am not quite as open to change and new surroundings as I was once. I feel more vulnerable. I feel the need to protect myself. I have always been self conscious about how I look and gyms have always been intimidating to me; especially one like this that is not simply laid out and where I do not know anyone. All of a sudden I felt very insecure about this new place with its different machines, new classes, and unfamiliar rules. It was my insecurity at its finest you could say.

Today was the day to just do it. I was hesitant at first because I was having more joint and muscle pain than in past weeks and my head was acting up after the physical therapist worked on it extensively yesterday. But I had previously chosen today to start going because except for some blood work, I had no doctor appointments or other pressing commitments that I could not get out of if I had to. So if I was down for the count afterwards, so be it!

No excuses.

And guess what?

I loved it.

When I got to the gym this morning, I asked about signing up for their free two session orientation and the staff person that was working the desk, Tom, talked to me about what I specifically wanted help with. This of course led to a conversation about my physical therapy, why I was doing it, my diagnosis etc. He immediately put me at ease and gave me a lot of various ideas about different work outs, especially in regards to classes and the pool. All of a sudden, I didn’t feel so overwhelmed. I felt like this was doable. I felt more secure.

I decided that today I was going to do my physical therapy exercises at the gym instead of at home and get an aerobic workout as well. I spotted the cross trainer, which is similar to an elliptical but looked more difficult as there was an incline. I liked the fact that it overlooked the pool area where I could observe a water aerobics class while I was working out. Besides some walking with my dog over the past week, I have not had any aerobic activity since maybe around Christmas and I anticipated that I would be starting from square one again. I jokingly told Tom that if I lasted three minutes without keeling over, that would be sufficient and I would move on to a bike or a treadmill, both of which had a lesser chance of making me pass out. We figured out, based on my age and recent physical issues, that my maximum heart rate should be around 140.

I don’t know what the deal was, but I was on that thing for twenty-five minutes. Granted the machine was at the easiest incline and resistance, but who cares?? Maybe it was all those physical therapy sessions or hours and hours of doing exercises in my living room. Maybe three months on a new eating plan has helped. Who knows. I was surprised at how much endurance I had and how well I did cardiovascular wise. Not that it was easy, but I got through the twenty-five minutes unscathed. After so many long months of being in bed or on the couch, it felt so good to be sweating and to be able feel my heart pumping so fast again.

It felt good to be out of the house.

To be having fun.

To be able to out one foot in front of the another.

To trust my body not to fall apart.

I know that this morning’s work out will probably wipe me out this evening and maybe even the next several days to come. There will be Motrin involved, maybe some stronger pain medication if I am desperate. Hot packs will once again be my new best friend. I also know that due to the Sjogren’s syndrome, exercising of any type will always be a constant battle for me; probably one that I will have to deal with every single day of my life. But for today, I feel like I can say that I have conquered yet one more obstacle on my path to wellness and healing.

And you know what?

It feels pretty amazing.

Photos Courtesy of Google Images

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