For Everything There is a Season

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Category: prednisone (Page 3 of 4)

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

Waterworld

April 26, 2012 / / 2 Comments
“The water is your friend. You don’t have to fight with water, just share the same spirit as the water, and it will help you move.” ~ Aleksandr Popov

I have not been in a regulation sized pool or swam a lap since freshman year of high school. Sure, I have been in backyard pools and in the ocean but not a REAL pool. I learned to swim later than most kids; I was about thirteen or so. As an awkward, geeky, and somewhat overweight freshman in high school, the swimming portion of our physical education classes was a nightmare for me. I will spare you the details but at that age, you can just imagine.

Anyways, I recently changed gyms and one of the major factors in that decision was because this gym has a pool and I thought it would be a good way for me to get the exercise I need when my Sjogren’s symptoms are flaring up; which can make even going for a walk difficult at times. However I had fallen five weeks ago and sustained a nasty wound to my knee which needed to fully heal before I could go in the water. This week it finally healed.

I had a lot of doubt about my ability to swim laps without making a spectacle of myself (completely unfounded worry) and I figured I would start my new found aquatic life with a water aerobics class. Of course this means going out in public in a bathing suit; which I had some anxiety over. It actually makes no sense because I go to the beach and walk around there in a bathing suit, but there was something about doing so in a pool area, at a gym with fit people, that seemed more intimidating to me. I hate the fact that even at the age of forty, I still concern myself with issues like this.

But of course I sucked it up and was constantly telling myself that people are there to work out and not notice how fat I may look in my bathing suit. Be brave I told myself. This is not high school. And I was fine.

The second I got my body in that pool, I felt like I was in pure heaven. I have struggled so much with my autoimmune illness and physical challenges over the past several months. I have also struggled with body image issues, as obviously noted above, related to not only the physical pain and fatigue I experience, but also related to the side effects of my steroids. These have included swelling, weight gain, and my hair falling out in clumps on a daily basis. In the pool though, my body feels less broken. It is lighter. I feel my muscles relax. I feel capable and strong. I even swam two laps doing what I think is a breast stroke. And I didn’t have a heart attack.

There are multiple issues to consider when someone with Sjogren’s syndrome spends time in a pool. Chlorine can be irritating to my already very dry eyes as well as possibly to my lungs. I did not put my face in the water today at the class, but I love to swim underwater. I think investing in a pair of swim goggles might be in order. I also need to remember to put in eye drops immediately before and after being in the pool. I am hoping that the chlorine will not be a problem for my allergies or lungs but if it does become an issue, that’s what I have a pulmonologist for. Those of us with Sjogren’s also struggle with severe dry skin issues which can be exacerbated my chlorine. Luckily, I live five minutes from the gym. My intent is to plan my morning so that I immediately go home and showe and apply body cream after being in the pool.

The class itself went well. I was not sure that I was getting much of a work out because my heart wasn’t pumping as hard as it does with other forms of exercise. And of course there was no sweating involved. We did something called water walking which involved a flotation device thing. We did stretching and aerobic exercises in both the shallow and deep ends. We also used light weights with some of the exercises. It didn’t even really feel like I was exercising at times although towards the end of the hour, I did notice I was appropriately short of breath. Time will tell because if I am sore tomorrow morning, then I had a good work out. Also I had an excellent night’s sleep last night and I have been exhausted since leaving the gym. It doesn’t feel like autoimmune related fatigue or coming off prednisone fatigue. It feels like your ordinary exhaustion from exercising.

Unfortunately, I also had to bring Molly for a walk this morning after the class as she has not been getting out enough and is acting like a total nut at times because of that. So now I am completely exhausted but besides a headache, I can say that I don’t have any pain. It is still a challenge for me to plan my days so that I can appropriately pace myself physically in terms of getting in my physical therapy, strength training, and cardiovascular work outs. As well as walking Molly, housework, medical appointments, shopping, cooking meals, etc. Before Sjogren’s, I could just plow through my day, but now my body requires frequent rest periods. It will all come together eventually I suppose. I have no choice but to make it work.

And the best part?

Ten minutes in the hot tub afterwards.

Nirvana!

Exercise and Sjogren’s

April 23, 2012 / / 8 Comments

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

I’ve been doing a lot of thinking about exercise lately. And about having an autoimmune illness. No surprise considering I have been back in the gym for about two weeks now. I cannot lie; it has been difficult at times. Before the whole Guillain-Barre incident this past January, I was, in between Sjogren’s flare ups, getting some exercise by walking my dog. I was also doing some strength training for a few months. However things are different now. Since I lost so much of my abilities to function with the Guillain-Barre incident, being able to move, walk, and just get out of bed has taken on a whole new meaning. I have definitely had to work harder at exercising in order to regain my strength, balance, and functioning.

With the help of a staff person at my gym and more importantly, with the help of my physical therapist, we have come up with a routine combining resistance work, weight lifting, and cardiovascular work in an effort to continue building up my strength, stamina, and to help accomplish my weight loss goals. The reason why I say it has been difficult is because I have so many factors working against me in my endeavor to get healthier and stronger. I am not exactly what you would call an athlete and never have been. I have the Sjogren’s syndrome symptoms to deal with as well as issues with the nerves and muscles in my head and neck. And let us not forget that I am weaning down on my prednisone which tends to aggravate my joint pain, stiffness, and a host of other issues.

Many times I am sleep deprived either due to pain issues and medications. Many times I am unmotivated to exercise because I am just fed up with always struggling to get through the day. Many times I don’t want to get any exercise because I know for a fact that it is likely I will be very sore the next day. And really, I already have enough pain and fatigue issues to deal with.

But I do it anyways.

I have found that all of those above reasons I listed for not wanting to exercise are one thing: excuses.

The excuses can go on and on. Poor me, I cannot exercise because I am in pain. Or because I have this terrible chronic illness. I am too tired. I can’t use a a certain piece of equipment because I am too fat or too uncoordinated. I cannot exercise because I need the energy to do other things today.

I will be the first to admit that I have had to work much harder than I would have liked to work this time around in order to pace myself through the week so that I can get some type of exercise on an almost daily basis. Sometimes it has meant giving up something social I really wanted to do that day or not having my home as clean as I would like it. It has been a matter of prioritizing. I do this prioritizing because I strongly feel that exercise is going to be one of the key factors in helping me get well or at the very least, hopefully help decrease the incidence of further Sjogren’s complications.

The results I have seen, first in the seven weeks of physical therapy I have had and more recently in the gym, have shown me how essential getting exercise is in the management of my autoimmune illness. Yes, I have been dealing with a lot of muscle soreness from using muscles that I didn’t know I had. And I am absolutely useless after about 4pm as I am so exhausted from the exercise that I can barely function. But guess what? When my Sjogren’s is in full gear, I am pretty much useless after 12 or 1pm anyways. Far as I see it, I am ahead of the game right now.

So the benefits I have seen so far is the quick recovery I have made from the Guillain-Barre. Until that 4pm time, my energy level has increased dramatically during the day which overall, has improved my quality of life. The withdrawal symptoms from the prednisone have been much better than usual although admittedly, I am not sure if this is due just to the exercise or to my dietary changes as well. The biggest change however has probably been in my stress level and overall well being. I try to do my work outs in the morning when I tend to have the most energy. I swear that I am getting high on the endorphins.

I think that oftentimes those of use who have an autoimmune illness or any other chronic condition feel that we cannot exercise as it will make us worse. Or that we are too sick to do something. And there are those rare people, such as quadriplegics, who truly cannot do any exercise on their own. However that is not the case for most of us.

It doesn’t have to be all or nothing and there have been many studies proving the benefit of exercise on pain and fatigue; as well as the depression and anxiety that often accompany various chronic illnesses. There are so many different ways to exercise that do not have impact on our joints such as swimming or resistance exercises. You would not even believe the bicep muscles I have developed just from doing some simple exercises at home using an exercise ball and a resistance band. I guess the point is to just do something. Anything. Whatever you are capable of doing is better than nothing at all. And who knows, you may even surprise yourself.

Photo: Courtesy of Chuck Myers

Eight Weeks Later – The Nutritional Odyssey Continues….

March 12, 2012 / / 5 Comments
“Let food be thy medicine, thy medicine shall be thy food.” ~ Hippocrates

Eight weeks later I am still following a nutrition plan that I began January 18, 2012. A lot has happened to me in those eight weeks, both in terms of the eating plan and in regards to my Sjogren’s syndrome. The Sjogren’s syndrome, an autoimmune disorder, has been the catalyst for drastically changing how I eat in the first place.

I have written two previous blog entries on the topic which can be found by following these two links so hopefully I am not repeating myself too much:

Nutritional Healing
Nutritional Healing Update

I started eating this way after hours and days of research in a desperate attempt to try and contribute to controlling my symptoms as my Sjogren’s symptoms were worsening relatively rapidly. I have a history of lousy nutrition and being overweight and since my first autoimmune symptoms in December 2007, not one physician has suggested that I do any dietary changes in an attempt to help alleviate my symptoms. Of course nutrition research is not funded because it is not profitable so there is a scant amount of true research information out in the medical community about the positive effects of diet on autoimmune disorders. However I read enough patient stories and experiences to know it was something I had to try and if it didn’t help my Sjogren’s, it sure as heck was going to help the rest of me.

People have been asking me if I have noticed an improvement in my Sjogren’s symptoms with this new way of eating which is gluten and dairy-fee, semi vegetarian, reduced sugar, reduced processed foods, no fast food, whole foods, no soda or caffeine. The answer is:

I cannot say with any certainty.

The same time I started my eating plan, I started on large doses of steroids for neurological issues, was diagnosed with two blood clots in my lungs, and received a diagnosis of another autoimmune disorder called Guillain-Barre. My body has been a huge deposit for steroids, blood thinners, and multiple other medications I am not accustomed to taking. I think that as I wean off the steroids and recover fully from the Guillain-Barre (which I absolutely will), the answer to this question will be more clear.

What I can say is that until my last steroid infusion, I was tolerating some of the side effects better than usual, my periods have been more tolerable, cravings for high fat and sugar laden foods have diminished dramatically. I feel much more in control, with a few exceptions, of my eating. Until my last infusion last week, which was the fourth in six weeks, and in addition to oral steroids everyday at home, I had lost weight. This last infusion killed me in terms of fluid retention, gaining some weight (which has already started to come off), drastic mood swings, heart issues, etc. In regards to non autoimmune issues, my lipid profile (which includes cholesterol, LDL, HDL) is the best it has ever been; very close to perfectly normal and my blood sugar is perfect. Very important since I come from a family history of heart disease and diabetes.

So time will tell. After doing some research, I also learned that it can take several months to notice a positive effect and I am in this for the long haul.

I can honestly say that to the best of my knowledge, I have been on plan with the exception of one time and that demonstrated some proof that I am on to something. After a horrendous appointment with my neurologist last month, I was driving home by myself and was very upset. So how did I deal with that? Burger King drive through of course. The whole works: double cheeseburger, fries, and a Coke. I had not had any Sjogren’s related joint pain in quite a while because of the steroids and sure enough, the next day I woke up so stiff and arthritic that I actually questioned if they gave me the right medicine, steroids, at my last infusion a few days prior. Of course they did. It was the food. I am certain of it.

I wish I could say it has been an easy journey but it has been challenging at times. The learning process, shopping more often, cooking all the time and such really can take a toll on me when I am not physically feeling well; especially with all the neurological issues I have had. Not to mention the physical therapy, doctor’s appointments, etc. However this has just meant that I have to ask for help when I am REALLY sick and that I have to plan and prioritize when I am able to do more for myself. For example, yesterday I spent time going through cookbooks, planning meals, and making a shopping list so that I can decrease my trips to the store. I only have so much energy to use in my day and it is limited lately but the food part HAS to be a priority.

My other challenge has been eating out and eating at other people’s homes. Because in reality, the rest of the world is not eating exactly like me although for the life of me, I cannot imagine why. Eating out has gotten easier and I have found a few restaurants that are very accommodating to my needs. They include places Red Robin, Pizzeria Unos, The Roadhouse, which is a local joint in my town, and a slew of independently owned restaurants in some nearby towns. I am finding that gluten-free is not as big a deal as finding a place that provides gluten AND dairy free options. I am hoping that as awareness of food allergies catches on more, there will be more options available so I can visit some of my old favorite haunts such as Kristina’s and the Hanger (both local places as well) once in a while.

My experience with eating at other people’s homes and social functions has been limited because of my health lately but I was at a family function this past weekend that was challenging, VERY challenging. But I did it. I knew there was going to be pizza, birthday cake, etc. So I brought my own supper and a low sugar, gluten/dairy-free dessert and thought how awesome it was that I was so prepared.

Yeah, not so much.

Pizza is my favorite food in the world and the aroma of the pepperoni soaked pie almost did me in. Plus I was all messed up from the steroids. I wanted to dive into that box head first or at the very least, take it and run like hell. So one might ask, why deprive yourself? What is the big deal about a slice or two of pizza? The big deal is that gluten and dairy can do damage to your intestines that you may not even know about and set you back god knows how long. It is not like a traditional diet where you give in to your craving and move on, compensating for it later. At least not that I know of and I wasn’t willing to risk all that hard work. I left that evening pizza free. And you can bet I will be making an awesome gluten and dairy-free pizza for Chuck and I sometime this week.

I have also found it very helpful to be prepared for travel such as for doctor appointments and long days. I bought a lunch box, a bunch of food containers, ice packs, etc. When you have what you can eat right at your disposal, it makes a huge difference when you come across a hospital coffee shop that literally only has a bag of peanuts and a bruised apple to choose from while you wait an extra hour to see your doctor!

So these have been some of the challenges in my new found way of eating. There have been a lot of blessings though as well. To start with, I have found a love of cooking that I never knew I had. And to be honest, I am kind of good at it! I am not the most creative cook so I rely a lot on some really great cookbooks I have found. However slowly but surely, I am learning to make some things without a recipe and discovering a culinary world I never knew existed. It makes me feel good to create something with my own hands that is healthy and nutritious for my body. Yes, there are occasions that I resort to a gluten/dairy-free processed meal that some factory made for me but I feel no guilt about that because it is so infrequent.

I also enjoy the challenge of creating dishes and meals that are not only on plan, but also taste fantastic. I appreciate food now more than ever because I actually taste the FOOD itself; imagine that! I also find that I am starting to look forward to certain healthy foods such as kale, black eyed peas, and quinoa, rather that Chef Boyardee ravioli or fast food.

I never want to be one of those people who runs around saying how their lifestyle is the only way to go; whether it be in regards to food, exercise, or anything else. But I will continue to let people know how it is going and share information. Not just because I happen to have this autoimmune disorder, but because the fact is, the typical American diet is lethal and the incidence of obesity and weight related health issues in this country is off the charts. We are so obsessed with losing weight that we don’t stop to think about being healthy. That should be the goal.

Sometimes all it takes is a small change. Eat a vegetable every day. Pass on the fried appetizer. I started this way of eating plan eight weeks ago but reality is, the process started for me a year ago when I drank my first green smoothie in an effort to get more greens into my body.

A whole year ago.

Who knows where I, or you, can be a year from now….

Photos: Courtesy of Google Images

The Road Less Traveled

January 23, 2012 / / 7 Comments
“The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled. For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers.” ~ M. Scott Peck

I have had a lot of questions about how my new found eating plan has been going so I figured I would blog about it rather than updating my Facebook status several times more a day than I already do. I know, I am working on that. What can I say? It’s winter, I have been housebound way more than usual, and even the dog gets sick of listening to me after a while!

So I have been going strong since the day after Christmas with eating healthier and getting back on my green smoothies. I wrote about my intention to further expand this in my previous blog entries: Patient, Heal Thyself and Nutritional Healing.  Last week I started the whole gluten-free, dairy-free, semi vegetarian, no soda, minimally processed foods, reduced sugar business. And yes, I am pretty much making it up as I go along since this is not a specific “diet” plan so to speak. Rather, it is a hodgepodge of what I currently think to be in my best interest health wise.

I will be frank. It has been difficult, very difficult. But not more difficult than my Sjogren’s Syndrome related health issues over the past few months and especially over the past two weeks. I am glad that I started to detox from all the Christmas indulgences the day after the holiday. It gave my body a chance to adjust to being off caffeine (which I was off of until the holidays) and processed sugar. I truly believe that there are certain foods that I am addicted to and the big ones are sugar and fast food. I also have found it amazing that once I have gone through that detoxification process, I crave the bad stuff so much less. Past experience has taught me that once I have more than a treat or two in a week, all bets are off because my body seems to then want it more and more.

One of the biggest challenges has been that I am doing this all at a time when I am taking a dose of steroids (prednisone) that I have never had to take at this dose (50mg a day) for this long a duration. Prednisone is notorious for causing excessive hunger, weight gain, cravings and menstrual difficulties which can in turn produce hormonal changes that affect all of the previously stated issues!  But I am resolved to not let that be a barrier for me. In addition, if my nutrition changes help my autoimmune disorder, then hopefully the prednisone will someday soon be a thing of the past. I know I need to give the nutritional plan at least three or four months before I can make a decision about whether it is working for me or not.

Another huge challenge for me has been figuring out the whole gluten-free/dairy-free situation. It is not that difficult to figure out one or the other but the two combined gives me a run for my money. Gluten and the hidden protein of dairy, called casein, are in an unbelievable amount of foods and personal care products.Think about anything processed: condiments, sauces, bread, pasta, beer, drinks, salad dressings, baked goods, cold cuts, marinated meats, hot chocolate; foods in restaurants; I could go on and on! I am not sure how diligent I need to be with the gluten in the personal care products such as  lotion, makeup, shampoo, etc. but I am going to err on the side of caution. My thinking is that if I am putting myself through all this, get it right the first time. As luck would have it, a lot of the personal care products I use because of my Sjogren’s are gluten-free anyways…thank god!

I have found many ways to make this whole process easier. The internet has been an invaluable tool as has my social network of friends and acquaintances who have trail blazed before me. I love the fact that I can type in “is Heinz ketchup gluten-free?” and get an immediate response; most of the time! Certain stores like Trader Joe’s, which I have always loved anyways, do a huge part with training their employees in helping you out. I found out today that they even have a bulletin board with different allergy food lists so that you can take the list around the store in order to make life easier.

I have also learned two valuable things; I must cook at home most of the time in order to accomplish this great nutritional feat and I must speak up for myself without worrying what other people are going to think. At home I have complete control over what is in my kitchen and more importantly, what goes in my mouth. When out in public, especially at restaurants, I have to ask as many questions as I need to and be proactive about bringing my own food as needed. I have been blessed with a very supportive fiancee whom although I do not expect to do this exact plan with me, is more than willing to eat whatever I make. I have successfully divided up our cabinet in sections for foods that are allowable for me and then not allowable in order to make the process easier for both of us. As a matter of fact, as I am writing this, he is giving me a break from cooking and whipping up a pot of gluten-free, dairy-free, vegetarian chili for tomorrow and the next couple of days.

I so love this man.

I know restaurants and socializing will end up being my biggest struggle with this whole way of life but I think it will get easier with time. I don’t want to avoid social situations just because I don’t think I can participate. I had my first restaurant meal at Pizzeria Unos the other day with my mom after a very long day. We were both famished after my doctor’s appointment and I had left my car in their parking lot so she could drive the rest of the way to Hartford. I had done a little online restaurant research and thought I might be able to get a decent, safe meal there. I was not disappointed. They had a separate gluten-free menu and the waitress was good at helping me figure out how to avoid the dairy. It was quite an enjoyable meal with my mom!

As I go through the next month or two of meeting with doctors and undergoing medical tests to try and sort some new things out in regards to the Sjogren’s Syndrome, I know that I am doing everything in my power to hopefully help heal myself. I am taking one day at a time, one hour at a time even. I am discovering a host of new foods that not only did I not know existed, but that I actually enjoy. It is  exciting doing such a positive change for myself.

It makes me feel empowered.

It gives me some peace.









































Photo Courtesy of Google Images

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