Hello all. Another week down. Another appointment under my belt.
It has been a rough week to put it mildly. As many of us know, stress is becoming a major epidemic in today's society and culture. Not only do those of us with chronic illnesses have things to worry about everyday, but the entire world is going through so much economically, politically, etc. I always feel so overwhelmed with what I have on my plate, I find it hard to keep up with current events and pop culture because it adds a whole other level of worry. My family, of course, is not immune to any of this. As a prime example, I believe as a family, we had a nervous breakdown this past weekend. In the days following, we have been trying to pick up the pieces and mend the residual damage.
In doing so, I have been avoiding modern technology. I find, for myself, that refocusing my thoughts and priorities is usually what it takes to get my mind back on the right track. I find myself resenting what I see on television or on the computer that I desire but do not have. I find myself getting emotionally involved and attached to news stories from across the world, and in turn having a strong desire to do something about it. In reality, I have no control over politics. I have no control over natural disasters. I have no control over who's cheating on who, or who's lying about what. No control, must let it go.
Today, I actually sat down and watch television. I allowed myself to relax and watch an entire show. John Ramsey was on this particular program. He was discussing what has gone on in his life over the past 15 years, since the death of his 6 year old daughter Jon-Benet. He lost his daughter, he and his family were looked at as having something to do with the tragic death, he lost his wife, after her death the family was publicly cleared of any wrong doing in the death of Jon-Benet, and finally he found a new love, a new wife. He has written a book about his ordeal. I could imagine it would help so many going through any type of struggle in life to put things into perspective.
He said one important thing that stuck out to me. He was asked how he was able to find happiness after so much turmoil. He said that a few years ago a good friend asked him, "Do you think the best days of your life are behind you." John said, "Well, yes. How could they not be?" His friend replied with a comment similar to: You have to think the best days of your life are ahead of you. John explained why that made so much sense. There has to be something to look forward to. This is what we call hope. You must believe that the best days of your life are ahead of you.
I quickly jumped to my desk to write this down. I thought, "There has got to be some way I can use this. Is it possible for the best days of my life to still be ahead of me?" An honest question. Ironically, as I'm talking to myself and jotting this down, John is still on the TV in the background explaining it may not be what we expect, it may not be what we planned, it probably isn't what we think will make us happy right this very moment, but if you don't believe there is something better out there for you...... God puts us on this earth for a purpose. That lead me to one of my favorite thoughts, "God does not cause suffering in vain. He would not put us through something so hard for no reason." It started coming together for me.
Still, even writing this blog, hoping someone out there is reading and actually getting something from my ramblings, I still don't feel that peace. I am seeking it, actively. I want that peace of mind that it is all going to be ok. I am doing my best in every possible way, and that is all I have control over. I have begun to pray outwardly. I actually get down on my knees and open my mouth and speak my prayers. I consciously decide to find the good in every situation, which actually starts becoming second nature quite quickly. I actively slow my snowballing negative thoughts to grasp reality and look at things more rationally. Yet, I am still not whole.
I mentioned that I had another appointment this week. This was a follow up with my immunologist, whom I am beginning to love. No big news, thank goodness. We are making an attempt to control the allergies he discovered in hopes that it will help with my energy levels and daily feeling of malaise. He along with my primary believe that many symptoms from the combination of diseases I have may subside once my body is not under so much stress. I believe they are right. I have hope that the allergy medication along with allergy shots will help lift some of the weight off so my body can gain some strength and control.
I also wanted confirmation on the most recent diagnosis. It is new to me as is the terminology surrounding it. I wanted to be able to relay the information on my blog as well as understand what I am facing. I have APS II or autoimmune polyglandular syndrome type 2 aka Schmidt syndrome. It is a rare disorder in which the immune system attacks several different organs or glands throughout the body. Most typically it is seen with someone who has been diagnosed with Addison's disease (a condition where the body does not produce enough cortisol) along with Type I diabetes or Hypothyroidism. I, however, have not been diagnosed with Addison's. It has been thrown about and I have been tested for it, but no diagnosis has been made there. Since it is a rare syndrome there is little information on it. There are also very few doctors who understand the scope of it. Even my immunologist consulted with doctors at a university to insure the diagnosis. As I learn more, I will write more and inform more, but I would like to back away from that at this time to prevent misinformation to needy people.
I only want to inform, inspire, and release. I hope that my new saying, "The best days of my life are still ahead of me" will begin to become a natural part of my thinking. I hope that it can inspire me to do something positive with the nervous energy that builds up, as it always does. I am always looking for inspiration. I am always looking for that one thing that is going to spark the passion in me I had before it swept so quickly away. I am here for a reason. I am here for good.
Friday, March 16, 2012
Thursday, March 8, 2012
A Good Day To Get Back To Basics
Hello world. It has been a while. Quite a long while. I'm glad to be back though. The last three or four months have been a roller coaster. I feel that every time I get on it my blog that is what I have to say. Life with chronic illnesses, especially comorbidities, is a roller coaster. Why do I still find myself waiting for the lull? waiting for the downtime?
The holidays turned out to be great. My last post was just before the holidays, and I remember being so down. I was so worried for my son and family. I was so worried I would be feeling horrible and they would have to deal with me that way throughout. Luckily, I have an amazing family who pulled together and lifted me up. Although, it did not go off without a hitch, I must say that my son had a wonderful time. I got to enjoy some modified yet traditional holiday food as well as seeing the joy on my son's face. It was extra special to me because this was the first holiday I did not feel like an outcast, a burden, or forgotten. That is something I have not been able to say for at least 4 years.
The immunologists tests came back. Fortunately or unfortunately, I am not completely sure I understand the terminology and jargon he used so I will reserve my explanation and results until after my followup visit with him next week. I can say that we do have some new answers and my hope has been restored.
I really don't even want to make this entry about health. Health is such a vital part of everyday life for all of us. It has consumed my life to the umpteenth degree. Today, I would just like to take a deep breath and reflect on any other aspect of life.
I have come to the realization that the ages between 25-30 are a very difficult transition stage for many. I happen to be in this age group so I know first hand, but in my interactions with my peers as well as my elders I am hearing many of the same concerns. It got me thinking? How can they all be so confused, overwhelmed, and have so many doubts? I thought I was nearly alone in my feelings because my health has derailed so many of my plans and dreams. I was wrong. How selfish, right? HAHA
We all get to a stage in our lives where we realize that what we thought we would have accomplished, has yet to be achieved. What we thought we would be doing, most of us are not. Where we thought we'd be in our lives is far from where we are now. What will the future hold? Did I take the wrong path? Can I really live this way for the rest of my life? And why did no one tell me it was going to be so hard? Does anyone have an answer?
I do! The answer is, no one knows the answer. What I do know that is that our lives are not in our control. We can do the best we can, but we have to just go with the flow. Change is inevitable. You cannot plan who you will fall in love with. You cannot plan landing the perfect job. You cannot plan how many kids you'll have by any certain age. These things can be planned for, but they are not certainties or give ins by any stretch.
The truth of the matter is, every generation has been through this transition of being a kid turning into an independent adult. All at different ages and different stages, but everyone goes through this. But look at this from a broader lens. In your twenties, given the life expectancy these days, is only about a third (if that) of your life. The changes, uncertainties, doubts, fears, joys, accomplishments, achievements you have gone through at this stage are merely a small portion of what you have yet to see. Rest in the fact that no one knows exactly what they are doing. Rest in the fact that you have every opportunity to change the situation you are in at any point...or even, at that, maintain where you are i that's what makes you happy.
You do not have to live up to anything. You do not have to do things because someone else told you that's how it is done. No one has the answer. Find what inspires you. Don't expect great things. We forget that as kids the smallest, seemingly most insignificant, things amazed us. If reading inspires or motivates you, do it. If exercise does, do it. If blogging does, do it. If sky-diving does, do it. If starting a company does, do it. The bottom line is, nothing gets done if no work is put into it. You have to decide for yourself that "this" is what you want to do. Be confident in that. It is what makes you happy.
Yes, we all have responsibilities. We all have obligations. We all have some sort of expectations. But sometimes the simplest statements wrap it up. Do your best. That's ALL you CAN do. Beyond that, let it go. Knowing you've done what you can will give you so much power. You know the saying, change the things you can and accept those you cannot change. It's true. All the worry, thought, and anguish in the world will not affect the powers that be. Find one thing everyday that warms your heart, even for a second, and hold onto that feeling as long as you can. Come back to it throughout the day in times of stress. You may be surprised at how incredible you really are. You may be surprised at how much the world has to offer.
The holidays turned out to be great. My last post was just before the holidays, and I remember being so down. I was so worried for my son and family. I was so worried I would be feeling horrible and they would have to deal with me that way throughout. Luckily, I have an amazing family who pulled together and lifted me up. Although, it did not go off without a hitch, I must say that my son had a wonderful time. I got to enjoy some modified yet traditional holiday food as well as seeing the joy on my son's face. It was extra special to me because this was the first holiday I did not feel like an outcast, a burden, or forgotten. That is something I have not been able to say for at least 4 years.
The immunologists tests came back. Fortunately or unfortunately, I am not completely sure I understand the terminology and jargon he used so I will reserve my explanation and results until after my followup visit with him next week. I can say that we do have some new answers and my hope has been restored.
I really don't even want to make this entry about health. Health is such a vital part of everyday life for all of us. It has consumed my life to the umpteenth degree. Today, I would just like to take a deep breath and reflect on any other aspect of life.
I have come to the realization that the ages between 25-30 are a very difficult transition stage for many. I happen to be in this age group so I know first hand, but in my interactions with my peers as well as my elders I am hearing many of the same concerns. It got me thinking? How can they all be so confused, overwhelmed, and have so many doubts? I thought I was nearly alone in my feelings because my health has derailed so many of my plans and dreams. I was wrong. How selfish, right? HAHA
We all get to a stage in our lives where we realize that what we thought we would have accomplished, has yet to be achieved. What we thought we would be doing, most of us are not. Where we thought we'd be in our lives is far from where we are now. What will the future hold? Did I take the wrong path? Can I really live this way for the rest of my life? And why did no one tell me it was going to be so hard? Does anyone have an answer?
I do! The answer is, no one knows the answer. What I do know that is that our lives are not in our control. We can do the best we can, but we have to just go with the flow. Change is inevitable. You cannot plan who you will fall in love with. You cannot plan landing the perfect job. You cannot plan how many kids you'll have by any certain age. These things can be planned for, but they are not certainties or give ins by any stretch.
The truth of the matter is, every generation has been through this transition of being a kid turning into an independent adult. All at different ages and different stages, but everyone goes through this. But look at this from a broader lens. In your twenties, given the life expectancy these days, is only about a third (if that) of your life. The changes, uncertainties, doubts, fears, joys, accomplishments, achievements you have gone through at this stage are merely a small portion of what you have yet to see. Rest in the fact that no one knows exactly what they are doing. Rest in the fact that you have every opportunity to change the situation you are in at any point...or even, at that, maintain where you are i that's what makes you happy.
You do not have to live up to anything. You do not have to do things because someone else told you that's how it is done. No one has the answer. Find what inspires you. Don't expect great things. We forget that as kids the smallest, seemingly most insignificant, things amazed us. If reading inspires or motivates you, do it. If exercise does, do it. If blogging does, do it. If sky-diving does, do it. If starting a company does, do it. The bottom line is, nothing gets done if no work is put into it. You have to decide for yourself that "this" is what you want to do. Be confident in that. It is what makes you happy.
Yes, we all have responsibilities. We all have obligations. We all have some sort of expectations. But sometimes the simplest statements wrap it up. Do your best. That's ALL you CAN do. Beyond that, let it go. Knowing you've done what you can will give you so much power. You know the saying, change the things you can and accept those you cannot change. It's true. All the worry, thought, and anguish in the world will not affect the powers that be. Find one thing everyday that warms your heart, even for a second, and hold onto that feeling as long as you can. Come back to it throughout the day in times of stress. You may be surprised at how incredible you really are. You may be surprised at how much the world has to offer.
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