For Everything There is a Season

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Category: chronic illness (Page 12 of 13)

Helping the Person With A Chronic Illness.

January 25, 2012 / / 20 Comments

Chronic illness: any disorder that persists over a long period and affects physical, emotional, intellectual, vocational, social, or spiritual functioning.

I have had a chronic illness called Sjogren’s Syndrome for approximately four years. I say “approximately” because in my mind, that was about the time my noticeable symptoms began to have an impact on my level of functioning. Looking back, it certainly seemed that the Sjogren’s may have been lingering for years before that. I didn’t notice though because I was too busy living my life.

Sjogren’s Syndrome, like all autoimmune diseases, is a chronic illness. That means that it is always there. It is not like a cold, broken bone, or flu where you get treated, feel better, and continue on with your life in the usual manner. It is always a part of your life, every single day. Like a roller coaster, it has peaks and valleys. Sjogren’s Syndrome also has the great misfortune of being an “invisible illness” which means that its devastating effects usually cannot be seen or noticed just from looking at the person. Maybe not by speaking with the person either. A person who was seen at a social event and appeared “fine” may be updating their Facebook status six or twelve hours later stating how sick they are. It’s not an exaggeration or a plea for sympathy. Just the way it works.

I believe that I have worked very hard at being a person who does not solely identify herself by her illness. I think for the most part, I have succeeded at this. However I also believe that I am at a crossroads with this issue. In an effort to diminish the impact of Sjogren’s on my existence, I have turned a blind eye to some of the unique and difficult situations that can arise in my life and in my relationships while living with a chronic illness on a daily basis.

As I have progressed through my Sjogren’s journey over the past several years, a lot of things have changed for me in terms of how I deal with the illness and just as importantly, how those around me deal with my illness. When a person first becomes ill, they are oftentimes fortunate enough to have a flock of people supporting them and cheering them on. The problem is, the illness does not go away. The months and years tick on and the initial rush and zeal to support the person diminishes, usually at a time when they need it the most. In most recent months, I have had the blessed opportunity to meet and develop relationships with other people who have either Sjogren’s Syndrome, another autoimmune illness, or a completely different chronic illness. The common theme I hear is the difficulties in managing our illnesses on a long term basis and the effect that the illness has on our relationships. As I form these connections, read other blogs, and network, it has become more and more strikingly clear to me how different our lives are from our non-chronically ill peers and how this can set us apart in society.

I am discovering more and more lately that there are certain needs, expectations, and beliefs that I, and many people like me, have that are not being met or understood. I have some theories about why this is. I also have some suggestions on how a person can be a support to someone with a chronic illness. Some I will keep to myself in the interest of continuously trying to understand the other perspective of what it must be like for the people in my life and some I will share because I live in the belief that most people are well intentioned and as chronically ill folks, we don’t always know how to speak up for ourselves and what we need. Therefore the people in our family, friend circle, workplace, and community sometimes don’t know how to be a part of our lives when dealing with us and our chronic illness.

As human beings with a chronic illness……

*We do not want to be defined by our illness or whatever diagnosis we may have. We are very aware that this may appear to be the case sometimes as illness is a frequent topic of conversation and a very real issue that needs to be managed on a daily basis. But really, it is not any different than discussing what consumes a lot of people’s time in general such as children, pets, hobbies, ailing parents, and jobs.

*We recognize that it is VERY difficult to be in any type of ongoing human relationship with a person that has a chronic illness. We know that and we spend a lot of time worrying about it. Plans get cancelled at the last minute and unpredictability is our new friend. We appreciate flexibility and spontaneity. Taking an unexpected ride to Walmart or Barnes and Noble? Call us. Even though there is a good chance we might not be able to go, the feeling that someone put forth the effort will stay with us, indefinitely.

*Time and energy are valuable to us. It is not helpful to question our decisions in regards to how or where we chose to spend our time. We know everyone has crazy, busy lives but oftentimes the one thing that makes the difference in whether we can socialize or not is if you can come to us. Our homes may be a mess, but the appreciation for the effort will be lasting.

*Please don’t ever tell us we “look fine”. It’s a well meaning statement but it just adds to the frustration of trying to exist in a world that does not understand how we can look so normal on the outside and be in hell on the inside.. But feel free to compliment the latest haircut! Or the new pedicure…

*Many of us with a chronic illness are riddled with guilt about burdening others and we therefore do not always know how to ask for help. We do not want to be perceived as needy or overly demanding to those around us. Yes, it is our responsibility to let our loved ones and friends know when we are struggling more than usual, but we also need others to take some initiative. Don’t think about it. Do it. Anything. I would be thrilled if a friend called me and said they were stopping by for a few minutes with a couple of magazines on their way to another destination. A quick smiling face can break up a very long day.

*Many of us have partners, spouses, children, parents, and friends who help take care of us when the going is rough, which could be on a daily basis. Please remember them. It may be helpful to keep in mind that not only do they have jobs, families, and other obligations, but they are also the main support person for the chronically ill person; which can be a whole other job in itself. Try not to assume that because a person with a chronic illness lives with someone else, that the person, or their caregiver, does not need support.

*Never underestimate the power of a phone! Or open up your laptop and send a message. Know what is going on. It’s hard for us to hear statements like you don’t want to “bother us” or “wake us up”. We know you mean well, but we are smarter than you give us credit for. We turn off our ringers when we are resting! It is more important for us to know that people care.

*Be our friend. Or don’t be our friend. That’s why some people are just acquaintances and that is OK. It’s not easy to have a friend with a chronic illness and it can be much more challenging than your average friendship. And don’t forget about us when events and get togethers come up. It is easy to assume that someone who is frequently ill won’t be able to attend something, but let us make that decision! We don’t want friends just during the tough times. We want them all the time! If you do feel that you cannot commit to being an emotionally supportive and present friend, then do what is best for you and move on.

*A lot of us with chronic illnesses struggle with issues around sleep, pain, and side effects from medications. While the rest of the world is buzzing away on a daily basis, these issues are a setup for isolation and loneliness.  It can be a very rapid decline from coping well to depression and hopelessness. Never underestimate the power of humor, a hug, or a kind word.

I hope this is helpful.

It is often said that it take a village to raise a child.

True enough.

I also think that it takes a village to support a person with a chronic illness. Maybe that way of thinking is not fair as we all have our own unique challenges and obstacles in life. For me, my experiences with needing the help of others are due to the fact that I have a chronic illness. But it’s not just about a village or community supporting those with chronic illnesses. It’s about us supporting each other as human beings. Because at the end of the day, in my opinion, that is all that really matters.

Photos: Courtesy of Google Images

Giving Up and Finding Peace

January 14, 2012 / / 9 Comments
“Anything in life that we don’t accept will simply make trouble for us until we make peace with it.” ~ Shakti Gawain

My fiancee and I were watching a movie in bed last night, Not because we were having this big romantic lustful evening, but because our bed was the only place I could get remotely comfortable after a nightmarish week of autoimmune related health issues, including severe pain. After the movie finished, I turned to him and asked him if he ever just felt like giving up. The question came out of my mouth so fast that at that moment, I realized how strongly I felt about wanting to give up. I didn’t mean giving up as in ending my life, but I meant giving up in the sense of not fighting so hard to try and be well. I wanted to give up all the doctor’s appointment, medications, advocating for myself, all of it. Most importantly I wanted to give up trying to maintain this positive attitude of “life is great, I am so grateful” crap.

Because reality is, sometimes it is crap. I have always tried to adopt this attitude of “fake it till you make it” because I honestly do believe that it works. The power of positive thinking is a strong one and thoughts do dictate emotions. If I am feeling down and out, I act like everything is better than it is; not because I am in denial but because positivity perpetuates wellness. The problem is that sometimes it does not give you the opportunity to truly acknowledge that sometimes things just suck. You go along through a chronic health situation and all of a sudden, the wall of illness seems insurmontable; the odds too difficult to beat. I think that as patients, and as human beings, we need to stop and be true to ourselves in acknowledging the reality of a lousy situation.

But maybe it is not about beating the odds and maybe it is about finding new ways to go around and over the wall of illness rather than trying to get through it. It is becoming quite apparent to me that over the past six months or so, the course of my Sjogren’s Syndrome has become more severe. Rather than being stable for a few weeks or months at a time, I am constantly dealing with one issue or symptom exacerbation after another. I cannot do everything I was capable of doing six or nine months ago. My ability to socialize on a regular basis or take any kind of trip has diminished significantly. Even the daily activities, such as housework and errands, that I could do more readily have been impacted.

So where has this left me?

It has left me really ticked off…and frustrated…and discouraged.

As this week has progressed and I have found out that my most recent pain and walking crisis may be due to Sjogren’s related nerve damage, I have come to the realization that I am constantly attempting to go through the wall rather than around it or over it. My motivation in trying to get myself better is to try and physically be the person I was before I got sick so that I can go back to work as a nurse and do all the social and physically active things that I used to be able to do. The problem with this is that I have this illness that does not allow for that. I can sit here banging my head against the wall and say I am going to be strong and determined. I WILL overcome and beat this disease. But all this does is leave me working for something that may be impossible to attain while at the same time losing sight of what I DO have. And I have a lot.

And the worst part of all this is….

I have no peace.

The nerve pain has ravaged my body leaving me sleep deprived, cranky, and overwhelmed recently. The worry and stress over how poorly my body has been functioning and the implications of yet another system involved in my illness has eaten away at me.

I have no peace.

I am so busy trying to be strong and determined in an effort to defeat the Sjogren’s beast that I have let it rob me of my peace. This in turn makes me quesion everything else about myself; my ability to follow through on social commitments, my ability to persist with my Sjogren’s book project, my ability to be the kind of partner that my fiancee deserves.

So instead of trying to go through the wall and get back the body I once had, I think it is time to find a way around the wall and develop ways to effectively cope with the body I have now. Maybe this is what I meant by saying I wanted to give up. I want to stop fighting and resisting. Rather, I want to accept the reality of where I am and the implications of my diagnosis while at the same time, continue to learn and utilize different healing treatments to restore and maintain as much of my functioning as my body will allow. I want to attempt to find ways to cope so that my pain and other symptoms do not dictate where I am mentally or spiritually as a person

And if I can accomplish this maybe, just maybe,

I will have peace.

Photo Courtesy of Chuck Myers

Photo

Doctor, Please Listen To Me!

October 4, 2011 / / 7 Comments
Although I talk a lot on this blog about my experiences with an autoimmune disorder called Sjogren’s Syndrome, I have dealt with and currently still deal with a multitude of other medical diagnoses. It would appear that when it came to the luck of the draw in the God designing Christine department, I got the short end of the stick. I was not a particularly sickly child, but once I entered my early twenties, it seemed like every few years a new medical problem reared its ugly head. I am not talking about common stuff either. Oh no, I got the wacky and unusual stuff….Hodgkin’s Disease (which is a lymphoma), AV Nodal Reentry Tachycardia (a defect in my heart’s conduction which required surgery), Factor V Leiden (a genetic blood clotting disorder), and of course the Sjogren’s Syndrome. Throw in some more common diagnoses like Hypothyroidism, Polycystic Ovarian Syndrome, etc. and you have a nice array of specialists that I have to deal with on a regular basis.

There is a point to mentioning all this though. Because of this ridiculous amount of exposure to the health care system as a patient and most significantly because of the challenges I have faced in dealing with doctors regarding the Sjogren’s, I have a very (and I mean VERY) low tolerance now for inadequate and impersonal medical care. As a nurse, I have always been a strong advocate for my patients; at times, even getting myself into a little hot water because I challenged my patient’s doctors when I felt that they were not being attentive or appropriate in their care of my patients. However as a patient, I was not always good at this. I got intimidated easily by my own doctors and always trusted that they knew what was best for me.

Over the past few years this has changed dramatically because, as I mentioned earlier, I struggled so desperately to get the Sjogren’s diagnosis. Heck, I struggled to even get someone to believe there was something wrong with me. And in the end, I listened to my own inner voice. I was relentless in my quest and I finally got an answer.

About a month ago, I woke up with severe abdominal pain that had started a few weeks previous to that day but I had chalked it up to problems with my menstrual cycle. On this day though, I felt that something was really wrong. I called my gynecologist who despite his somewhat impersonal manner, had never done wrong by me. By the time I saw him, I was doubled over in pain. After examining me, he decided I needed an ultrasound which could not be done until the next day. He would not give me anything for pain and said that Tylenol or Motrin should help. It did not.

The day after the ultrasound, I called the office as I was still in some of the worst pain of my life (which is saying a lot!) and I was looking for my ultrasound results. I was told by the nurse that there was small cyst on my ovary that would not be causing me this degree of pain and I needed to follow up with my primary doctor. And of course it was a Friday. I told her that I thought it was gynecological related and as I had issues similar to this previously, but just not as severe. Nope, I still got passed off to another doctor. At this point, I have been in severe pain for forty-eight hours and wished I was dead. My primary doctor was not in the office that day and I decided to go to the emergency room.

The end result of this trip to the emergency room was that I was dehydrated and a CT Scan showed that not only did I have a cyst on one ovary, but I also had a ruptured one on the other ovary therefore validating the high amount of pain I was in. I was told that it would take at least a few days until the pain would subside and they gave me pain medication to get me through the pain and told me to follow-up with my doctor in three days.

I never did go back to my gynecologist. I followed up instead with my primary care who I felt had enough knowledge to see me through the rest of this crisis. See because the problem was, I no longer trusted my gynecologist for many reasons. He knew me well enough to know that I would never be doubled over in pain unless something was really wrong. He did not adequately address my pain issues. He left me like that for over two days and then when I sought his help again, he dumped me on someone else when it was a gynecological problem all along.

I can’t let something like this go. There have been a few rare instances in the past few years where I have disagreed with the way one of my doctors has handled something and after having a discussion about it, it was resolved. But when I looked back to all my interactions with my gynecologist, I realized he sucked as a doctor. My visits were always rushed. I always felt like I was bothering him when I had questions about my treatment. He never seemed to want to address the fact that I have a mother with a history of both ovarian and breast cancer; therefore putting me in a high risk category. He didn’t take  time to do any teaching with me. He knew very little about how significantly my other medical diagnoses were affecting my life. He just didn’t seem to care.

I don’t need each of my doctors to hold my hand and be my friend. But I DO need them to treat me as a person; a person who has been through a hell of a lot medically. I deserve to be informed. I deserve for them to be accountable. I am very well aware of how difficult it is for doctors to practice with all the insurance regulations and productivity requirements. But you know what? There are doctors out there who DO listen to their patients. I know because some of them are my doctors. Never in a million years would my endocrinologist let me leave her office in the kind of pain I was in that day without doing something further.

So what am I to do? What are we to do as health care consumers? We need to stand up and make ourselves heard. We need to tell those that hold our very lives in their hands that we deserve the very best that healthcare has to offer. How do we do this? We screen our doctors before we become their patients. We go to our appointments organized with a medication list and a list of our questions and concerns. We take control of our own health by learning about our various conditions and then committing ourselves to truly getting better, even if it means changing bad lifelong habits. We listen to our instincts when we feel something is wrong with our bodies. We don’t let doctors rush us through office appointments or procedures. When we feel that we are not getting what we need from our providers, we look elsewhere. And we keep looking until we find what we need and what we deserve.

The outcome of my little doctor fiasco was that I immediately started looking for a new doctor. I know there is a stigma attached to patients who “doctor shop” and you know what? I don’t care. You shouldn’t either. It is your body, your life. I am not saying that if issues arise, but yet you trust/like your doctor, that you shouldn’t try to work it out. You should. But don’t let things go. I have been wrong a few times thinking I knew more than my doctor but a good doctor will respect that. It took me changing doctors twice to finally get an accurate cancer diagnosis with the Hodgkin’s disease and five rheumatologists to not only get the Sjogren’s diagnosis, but also to treat it properly. In both instances I am glad that I did not just sit there and trust that the doctor knew best.

I saw my new provider for the first time today for a procedure. She spent quality time with me trying to make sure she had a good history. She asked about my Sjogren’s, how I got diagnosed, and how it has affected my life. She did some teaching with me about not only the procedure but about the possible implications of the results. She was patient. She validated my very appropriate anxiety. She treated me like a person and not just one of her many afternoon appointments.

She knew what she was doing.

She cared.

It was exactly what I was looking for.

Photos :Courtesy of Google Images

I See Healthy People

September 8, 2011 / / 3 Comments
“He who has health has hope; and he who has hope has everything.” ~ Arabic Proverb

A big realization hit me hard a few days ago.

Ready?

Here it is…

I am envious of healthy people.

Not an easy thing to admit, even for someone like myself who is self-aware and pretty open about their faults. It’s honest though. And now I feel guilty for even feeling that way. Despite seventy-three blog entries over the past year and a half that I have been blogging, I have never written about envy, jealousy or anything related to the topic. There is a reason for that. Envy is a desire for some advantage or quality that another person has. I don’t typically think of myself as an envious person. I usually spend more time on making the best of what I have and that doesn’t leave much room for wanting something that another person has.

Lately though I look at people I know (always people I know because I would never want to assume that someone is without health problems unless I know for sure) and I wonder. What is it like to just do what you want every day? To have day after day without pain? To not have to plan your week around appointments, medications, and treatments? I hope I don’t sound bitter. I know the grass isn’t always greener as they say. Everyone has their problems. And let me be clear: I WANT everyone I know to be as healthy as they can possibly be. But that doesn’t change the fact that I would like to be in a healthy person’s body for a day…an hour…a minute. To have my body be free.

I also often wonder lately if healthy people appreciate what it is their bodies can do. The fact that their body takes them to work every day. The fact that their body can nourish and support a pregnancy. Do people appreciate being able to get up in the morning and know that no matter what they face during the day, their body will physically carry them through it?  I know I never gave it much thought before I got hit with an onslaught of medical issues.

 Do you appreciate it?

Do you take care of what you have and celebrate the uniqueness that is your body? Give it more fresh air and sunshine than fluorescent lights and recirculated air? More nutrients than toxic chemicals? More love than self-hate? It all seems so simple, yet many of us don’t do these things for ourselves.

Maybe the best way for my body to be free is to first free my mind and my spirit, completely. Trust more in God. Work on ways to effectively cope. Make peace with the body I have been given. Celebrate when it gets me through a day.

It may just be time to turn the envy I have towards others into gratitude for myself.









Photo: Courtesy of Chuck Myers

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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