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Category: autoimmune disease (Page 13 of 19)

The Great Coumadin Debate

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https://www.mbtn.net/?p=uopl7ipfk72 In 2004 I experienced sudden pain in my lower left leg. It was an unusual pain. I didn’t remember banging it against anything and I certainly hadn’t been active doing any type of exercise or sports recently. For a variety of reasons, depression had been my constant companion and I had been spending a lot of time laying around. That would soon come back to haunt me.

https://mocicc.org/agricultura/d3uyk3sg4 After a few days, the leg pain got worse and I went to see my primary care doctor. He wasn’t much of an alarmist but he thought it was worth having an ultrasound done on the “off chance” that I had a blood clot in my leg. To be honest, I thought it was overkill but then my thoughts turned to panic when the radiology department told me I could not leave the hospital yet and then called my doctor. My ultrasound showed that I did indeed have a blood clot and would have to go on injections of a blood thinning medication called Lovenox, followed by the oral blood thinner Coumadin, for a period of three months. Since I was a nurse, they sent me home from the emergency room with a prescription as I could do the injections myself which by the way, is easier said than done.

https://onlineconferenceformusictherapy.com/2025/02/22/fru29i9bstl My primary care doctor was suspicious about my blood clot because even though I took the birth control pill, I was a non-smoker. He ran a series of blood tests to check for genetic blood clotting disorders and sure enough, one of them came back positive. I have a genetic clotting disorder called Factor V Leiden and I am heterozygous which means that I only have one copy of the gene. My mother subsequently got tested for Factor V Leiden and was found to be positive as well.

https://purestpotential.com/ty65dvyc58 Because I am heterozygous (which is less serious) and was on birth control at the time which probably caused the clot, I remained on Coumadin for only three months. I came off the pill and was banned from hormonal birth control for life. I thought that was the end of it. For those of you who are unfamiliar with Coumadin, it is a difficult drug to be on. It requires frequent lab draws while they stabilize your dose and then usually you have monthly blood draws after that. Coumadin interacts with a lot of other prescription and non-prescription medications including anti-inflammatory medications such as Motrin and Advil. Also because there is such a low threshold for the therapeutic blood level, called the INR, you need to be vigilant about signs of having too high of a level, which can lead to bleeding. There are dietary issues that play a big role in taking Coumadin as levels of Vitamin K, which is found in foods such as green leafy vegetables, can dramatically throw levels off.

enter site Fast forward to February 2012. I am receiving high doses of IV steroids for what was thought to possibly be neurological complications from Sjogren’s syndrome but ended up being a mild case of another autoimmune illness called Guillain-Barre. For weeks, I had been experiencing severe leg pain and weakness which for a lot of the time, kept me in bed or on the couch. It never occurred to me or to my doctors that maybe I should go on blood thinners preventatively due to my Factor V history and current immobility.

go site Twenty-four hours after the third IV dose, I am sent to the emergency room with heart palpitations, thought to be related to the steroids, so that an EKG can be done. Labs are drawn and one of the labs, the d-dimer test, comes back suspicious and because of my Factor V Leiden history, a CT scan of my lungs is performed. Next thing I know I am admitted and told that two small blood clots have been found in my lungs and I am put back on blood thinner injections once again. Another trip to the hematologist and I am now put on Coumadin for at least a year and most likely for the rest of my life as I have now had two clotting events. I am also tested for other autoimmune clotting disorders which all come back negative. The hematologist admits that he is taking a very conservative approach.

Tramadol Tablets Online Months go by and I learn more about these two blood clots that were found in my lungs from several different doctors. I find out that they were very small and located in peripheral veins and likely were an incidental finding; meaning that if I had not come into the ER that day, these clots never would have been detected, caused me any problems and would have resolved on their own. However it did not seem that NOT being on Coumadin was even an option according to my doctors. At least that was the impression that I got.

Tramadol 50Mg Buy Online It took us approximately five months to get my INR to a therapeutic level and I was becoming frustrated with being on Coumadin because things were much different with my overall health than my first time around with the medication in 2004. I now had a very difficult to treat autoimmune disorder. I had to stop taking Motrin with helped significantly with my joint and other autoimmune related pain. I had to significantly decrease my intake of Omega 3 fish oils which I not only took for inflammation but was my treatment of choice to help manage mood swings related to taking prednisone. I constantly had to be cautious about my diet because I had started eating healthier and green leafy vegetables were a part of that diet. I had to be strict about making sure I ate the same amount of greens on a consistent basis. I was also restricted on trying alternative medication and herbs to treat my autoimmune disorder because of their potential interaction with Coumadin. To me, it seemed ridiculous that I was taking potent medications like prednisone and narcotics without having the opportunity to try an alternative treatment plan because of Coumadin.

https://danivoiceovers.com/5rpvvfo Now I know some of you may be sitting back and thinking that well, you have to do what you have to do, right? Better than the risk dying, right? Because that’s what can happen if one of these blood clots gets out of control. But that’s the thing. These two events were not random events. They could, in my mind, most likely have been prevented. So I started doing a lot of research because at this point, it was starting to become a quality of life issue. It’s easy for a doctor to say: stay on Coumadin for the rest of your life. But at forty-one years old, the rest of your life, is a long life. It is a risk. What I found in my research was that having two blood clotting events is not always a definite for going on lifelong Coumadin therapy. There are people out there who chose not to. Instead, there is the option to stay off Coumadin and then if they find themselves in a high risk situation such as a long plane ride, a hospitalization, or any other situation where they are at high risk to develop a clot, they go on Lovenox injections preventatively.

https://www.elevators.com/fatyeio0o  I am willing to do that.

https://www.brigantesenglishwalks.com/j9upnx4 I decided to call my hematologist and discuss this with him since my next appointment wasn’t until April and coincidentally I was admitted to the hospital the same day he called me back and could not speak with him. He told my fiance to have me call him back that Friday. I was having gastrointestinal issue related to Sjogren’s and because I had not been eating, my INR was too high. My Coumadin was held for the next four days and at one point, the doctors even considered holding off on doing an endoscopy, a procedure which I very much needed, because of the elevated blood level. I was pretty much done with the whole Coumadin saga at this point.

go The day before I was discharged from the hospital, which happened to be Friday, my blood levels stabilized and the hospital doctor wanted to start me back on Coumadin. I also remembered that this was the day that the hematologist was going to be available to talk to me. I called him. I have to admit, I was pretty nervous. I was certain that I was going to get lectured for even considering wanting to come off this medication and as strong as I was in my convictions about this being the right decision for me at this time, I wanted to have a rational and well thought out conversation with the hematologist about the issue.

go site And I did.

watch I told him my perspective and he told me his. It ended up that they were really not that different at all. Typically when someone with a genetic clotting disorder has two separate clotting events, the recommendation is that they go on Coumadin for life. But that is a recommendation. It doesn’t mean that all people do it. As far as I know, it also doesn’t account for anyone with heterozygous Factor V Leiden who had one incident on birth control, one incident with Guillain-Barre, and who also has a difficult to manage autoimmune disorder that could really benefit from other treatment that interacts with Coumadin. Because let’s be honest: that’s all just unheard of. Nobody gets all of those disorders in one lifetime. Only I do.

Purchase Tramadol Discount He did acknowledge that he was coming from a very conservative treatment standpoint and as a patient, I have to respect that. As a doctor, he seemed to respect where I was coming from. I even said to him “Do you think I am insane for wanting to do this?” to which his reply was ” Absolutely not.” It was not a conversation in which the doctor told the patient what to do.  I made it clear that my wanting to come off Coumadin was not an impulsive decision but rather a very well thought out one. At this point I had been taking Coumadin for nine months since my last clotting event.

https://getdarker.com/editorial/articles/l8rhkg0a The decision was made that I would stay off the Coumadin and follow up with him at my April appointment. I also agreed that I would be proactive about blood clot prevention. This means that if I am in a high risk situation, I will go on short term Lovenox injections. I will take care to wear special antiembolic stockings if I am not moving around as much as usual and I will not stay sitting or in bed for more than an hour or two without getting up and walking around; except for typical sleeping time or naps. It is going to require effort and diligence because nobody else is going to do it for me, as evidenced by what happened last February. I cannot rely on a pill to keep my blood from clotting anymore.

follow url Now this is all well and good. Fact is, I may get another blood clot anyways. I am well aware of that and to be honest, it scares me a bit right now. But it scares me more to be on Coumadin and recently  be told several times that my levels were high, unpredictable and then have to worry about bleeding. It’s a risk no matter which way I go and right now, I feel that the risk I am taking by staying off the Coumadin, coupled with the significant increase in the quality of life it will give me, is worth it.

https://lpgventures.com/t1n4ipgx This whole experience has opened my eyes to a few things. As a patient, I have choices. Medicine is not black or white. There is a lot of grey. A doctor can make recommendations, even strong ones, but at the end of the day, I am the one who has to live with the consequences of the health care decisions that I make. It doesn’t mean I will always make the right decisions but who is to say that our doctors do either? They are human too. They have the education and expertise to give us the information, but we are the ones that then have to ultimately live with the consequences of the medical treatment that we decide on. Our bodies. Our lives.

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What I Have Come To Understand

watch In the two and a half years I have been writing this blog, I don’t think I have ever written a post about a doctor’s appointment with my rheumatologist. The appointments tend to be pretty significant since the rheumatologist treats the Sjogren’s syndrome. I am sure that I have mentioned events that have happened at certain appointments, but I think that has been the extent of it. I think the reason for this is because I don’t think people will be interested or that the post may be boring. Today I realized that I may have made a mistake. Sharing information from these appointments with my rheumatologist not only may help someone else, but it also gives other people the opportunity to give me feedback about their experiences with different treatments, side effects, and complications from medications.

https://mocicc.org/agricultura/da2ta8zi37 I have had more severe symptoms than usual lately with some new ones thrown in for fun. Therefore I have been seeing my rheumatologist, Dr. P, more often than usual. These appointments tend to be  stressful for me compared to those with other doctors. Sjogren’s syndrome, like many other autoimmune diseases, often presents with a myriad of symptoms and often it is like trying to fit together the pieces of a puzzle. Is this symptom autoimmune related? Is it a side effect from a medication? There is the unpredictability of not knowing what the next step may be in treating the illness. Then there is also the fact that Dr. P’s office is an hour away from home, she is usually running behind (I have attributed this to the fact that she does not rush through her visits), and sometimes there is lab work to be done after the visit. From the time I leave my home to the time I pull back in the driveway, I am looking at a five hour trip. Exhausting.

here I have  been more frustrated than usual with her, myself, and the whole Sjogren’s situation in general. I had just recovered from the whole Guillain-Barre/blood clots in the lungs fiasco when I began to develop severe, debilitating migraines thought to possibly be autoimmune related. After struggling to find a medication at a dose I could tolerate to manage these migraines, some of my Sjogren’s symptoms decided to come out and play; most likely because I had weaned off my steroids. Severe fatigue and joint pain worse than I have had in at least a year were the highlights. In addition to that, I have been having some significant urinary issues that come and go and that has prompted some further testing; the cause thought to possibly be autoimmune or medication related.

https://www.mreavoice.org/gwo4u57bs9 What this has meant is that Dr. P and I have been continuously trying to figure out a course of treatment to manage my illness. A course of treatment for an illness that has no cure and really no acceptable or standard form of treatment. If you have diabetes, you change your lifestyle, check your blood sugars, and take insulin. The end result is that most of the time, your illness can be controlled. Not the case with Sjogren’s, or many other autoimmune illnesses for that matter.

http://www.mscnantes.org/k9xpbynr3a And there are only so many medications to try. Appointment after appointment Dr. P and I discuss the options and what may come next in regards to medications. She keeps wanting to put me on or increase my dose of prednisone. This gets me pretty worked up to say the least. If you have spent any time reading my blog, you will understand how much I hate prednisone. Here’s the thing though: as Dr. P said today, I am between a rock and a hard place and it is a matter of choosing the lesser of all evils. I have already been on many of the other autoimmune medications such as methotrexate, Imuran, Cellcept, and Enbrel. Cellcept did help quite a bit but made me so sick that my previous doctor had no choice but to take me off of it. Enbrel helped a little but not enough to justify the chronic sinus infections it was causing me to have.

https://geolatinas.org/ijcsdt76vp5 As we discussed today, there are some other options to consider such as the medications Arava and Rituximab. But they are not without their risks as well. It is hard to make decisions, I am sure for her as well as for me, about which risks to take. Do we consider Imuran again and take the risk of liver damage and other complications or continue trying the steroids at different doses and see what side effects I can live with and risk long term complications such as diabetes, cataracts, and stroke? As much as I hate the prednisone, there is no doubt, it works for most of my symptoms. The problem is that I need a lot of it and the more I take, the worse the side effects are and the higher the risk of severe long term complications.

https://www.marineetstamp.com/ed9hiarv So our plan for now is to double up my prednisone dose to 15 mg for a few days and then slowly wean it down to 10 mg rather than the 7.5 mg I am currently on. We did this about two weeks ago when the pain and swelling got bad enough to interfere with my daily functioning and it worked but once I got back to 7.5 mg for a few days, the symptoms started up again. So this time we will only wean down to 10 mg. We agreed that 10 mg is the maximum dose of prednisone that is comfortable for me long term. Well, for Dr. P anyways. 0 mg is the maximum dose I am comfortable with but the reality is that my options are getting fewer and fewer and I cannot risk further Sjogren’s complications or live in this state of health.

https://www.mbtn.net/?p=gvic5lb7pe What I came to understand from my appointment today is that there are no easy answers. Not even easy answers, but any concrete answers.

https://paradiseperformingartscenter.com/01mltam There is no medication in this world right now that is going to fix me without making me sick in some other way. Maybe someday there will be. But not today.

source I am also starting to understand that I don’t think my body is ever going to go back to the point it was at before December 2008, which is when Sjogren’s started to truly ravage my body.

see This does not mean that I still cannot do what I am doing; exercising, eating healthier, reducing stress. I will keep trying to control my symptoms through diet and exercise. I will live a healthy lifestyle. I will meditate. I will work with my doctors and stick with my treatment plan. I will laugh and I will play. But I guess for now at least, I am not going to place any of my hopes on any one medication to be the answer for restoring my body to the state that it was once in. Rather, I will continue to work with the body that God has given me in this moment and in this day to live in the best possible way that I can.

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Why I am Staying Gluten and Dairy-Free

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Best french fries in the world!! Gluten-free!

https://www.yolascafe.com/z996ap3bdo Over the past month, possibly even longer, I have been thinking a lot about whether this whole gluten and dairy-free eating plan I have been doing is worth it. Although it has gotten much easier, once I started doing Weight Watchers in addition to it, it made things a bit more complicated and challenging. However on two separate occasions, I intentionally ate a food item with gluten and/or dairy in it and noticed that I had some joint pain afterwards. Coincidence? Maybe. However at the time, it wasn’t worth the drama of investigating the issue any further.

That was, until I was off prednisone for over a month and my old enemy, joint pain, came back into my life on a regular basis. Despite a regular exercise regime and eating healthy, the joint pain and stiffness associated with arthritis began to worsen as well as the autoimmune related migraines, fatigue, and worsening of dryness symptoms. Is it possible that if I was eating gluten and dairy that the symptoms would have been much worse? Maybe. Like everything related to my illness, nothing is ever certain. Everything about it remains elusive to me.

So I go back on a low dose of prednisone which I remain on as I write this, which has given me some relief while my doctor is working on contacting my previous rheumatologist to investigate what previous treatments have been tried, why they were stopped, what worked and didn’t work, and try to decide if some of the medications I am taking now are making me worse rather than better. There is the possibility of adding another, possibly toxic, medication. The saga never ends.

During all of this, my fiance and I leave for a four day weekend trip to Old Orchard Beach in Maine. A place not exactly known for its gluten and dairy-free lifestyle. Junk food everywhere you turn and you can smell it within like a mile of even approaching the pier and downtown area by the beach. I had a plan though. I packed a bag of gluten and dairy-free snacks for the three hour drive up and back so I wouldn’t have to worry about eating on the road. I did a Google search on restaurants in Old Orchard Beach (OOB) to see what my options were.

I had made a conscious decision that while I was not going to let myself eat out of control, I was not going to be strict about counting points for Weight Watchers while I was away and give myself a break in regards to being so strict about my Weight Watchers plan. I know my leader would probably frown on this but it felt like it was the right thing for me to do. The gluten and dairy issue was going to be difficult enough. I felt confident that once I was back home, I would get right back on track with Weight Watchers, which I have.

My plan at OOB was to allow myself one dairy item which was a soft serve vanilla cone that I have been wanting all summer; and I mean ALL summer. I have been going to ice cream places with friends and their children all summer and getting sorbet with this plan in mind. My intent was for everything else at OOB to be gluten and dairy-free.

So this is what really happened. Out of the four days we were there, I was completely gluten and dairy-free for two of them. I was already having quite a bit of joint pain and fatigue when we got to the beach and pretty much was having a “what the hell is the difference now?” attitude about the whole gluten and dairy issue. I don’t think my eating was out of control in terms of amount but the type of food I ate made me feel so lousy that my body felt like I ate 10x more than I actually did. When I sit and think about the gluten and dairy items I actually DID eat in those two days, it came down to: that small soft serve ice cream cone, one regular beer, a buffalo chicken quesadilla (didn’t finish it), and a large slice of pizza. Everything else I ate the whole trip was gluten and dairy-free as far as I know. But I think the gluten and dairy was such a shock to my system that it felt that I ate so much more than that. It’s called bloat.

Now I cannot say that any of my autoimmune symptoms got worse because I already had joint pain and if anything, that got better. Not from eating gluten and dairy, but probably from being back on pain medication and decreasing my stress levels by being at the beach. But those food items did wreak havoc on my stomach. Now you have to keep in mind what I ate. That was some seriously greasy (and yes tasty) food. I cannot say if it was the gluten and dairy that caused the stomach issues or the type of food that did it. I can say that before vacation, I was eating much healthier. But, I was also eating, on occasion, similar foods such as pizza and buffalo chicken. I was just eating gluten and dairy-free homemade versions that were much healthier as well.

Here is what I do know. Without a doubt, I am very glad that I took my two day hiatus from my gluten-free, dairy-free lifestyle. While it does not answer the question of whether or not gluten and dairy directly the severity of my Sjogren’s syndrome, it is very clear to me that is directly affects my overall health. It does this by making me stop and think about what I put in my mouth. I make healthier food choices. I eat more whole foods rather than processed foods which is much better for people with inflammatory disorders like mine. Gluten and yes, even dairy (no matter what the media tells you), have no nutritional value and therefore are not a necessity for my body. I cook more than I eat out. I have seen improvement in other areas of my health not related to my Sjogren’s including my weight (because I am making better choices), my skin, hair, and nails, my gastrointestional system, and my menstrual cycle.

I am not saying that a gluten-free, dairy-free lifestyle is for everyone but for me, for now, it is worth the effort. My health is worth the effort. My life is worth the effort.

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“What Do You Do All Day?”

“Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.”  ~Martina Navratilova

What do you do all day? A question that I have been asked many times by a variety of people. For those of you who don’t know me, the question gets asked because I have not worked at a job for approximately three and a half years now due to a medical disability. I am forty-one years old. I have no children. In a society where most citizens work, stay home and raise children, do both, or are retired, I am an anomaly. And yes, I am very well aware of this fact.

I will be honest here. Up until recently, anytime this question was asked of me, I would get angry and defensive. The question gave me the impression that if I was not working a job outside of the home or raising kids in the home, what else was there to do in life? It made me feel that because I could not do either of these things due to circumstances way beyond my control, I was no longer useful. And that is why I would become defensive. Because for a while after I became disabled, I did feel useless. But that was MY issue, not the other person’s issue. I was in my late thirties when I became disabled and I felt like my life was over.

But my life was far from over. I started over and built a different type of life for myself and made my days productive and fulfilling in ways I never thought possible before I got sick. I don’t know what my future holds medically and maybe the routine of my days will change again someday. Although I am very realistic about the nature of my illness, I also hang on to the hope that maybe there is a chance that as insidiously as my work life was taken away from me, maybe someday it will eventually be returned to me.

Very recently, someone whom I respect and care about very much asked me “what do you do all day?” I had not been asked the question in quite a while and something in me clicked. Because it came from a person who I knew genuinely cared about me, I knew the question was just one of curiosity. It was at this point that I realized that maybe people just did not understand that there can be more to life than going to work every day or raising children. That someone like me can go through their days without being bored. Or even go through their days feeling fulfilled and with purpose. Maybe people just don’t understand how much is involved on a day to day basis in managing a chronic illness.

And because of those thoughts, here we are. Instead of getting defensive when the question was presented to me again, it made me think of how I do spend my time and I would like to share that. Not because I feel like I need to justify how I spend my days or my life but because I hope that this blog entry may help bring awareness and understanding to those people who may be curious what it is like to be in my situation. And trust me, I am not alone in my situation.

First off, none of my days or weeks are typical. Sjogren’s syndrome is a very unpredictable and sometimes progressive autoimmune illness. I can have a week or even a few months without any major issues and then suddenly be unable to function for days, weeks, or months. This is the part that keeps me out of work because you cannot hold down a job when you could be out sick several days a week or even several months at a time; not to mention that you actually have to work several hours at a time, in a row! Even when I am not having a major issue that requires immediate intervention or concern, I have daily issues that need to be dealt with that have become an accepted part of my life. An example of this is the dryness issue. Not necessarily something that would keep me from working a job but it is something that requires regular medical follow up care and daily attention.

OK, so what do I do all day? It greatly varies depending on how I feel. One of the biggest considerations is that I cannot do a full day of activity for several consecutive days due to pain and fatigue so I have to plan accordingly. Due to physical issues and limitations on some days, many activities can take me a lot longer to do, such as housekeeping. Before I got sick, I could have cleaned my current home top to bottom in about three hours, scrubbing floors and all. Now it can take me several days because I have to break the work up into sections. Keeping up the house, shopping, and cooking is my responsibility for the most part. I have made it my responsibility. I have a fiance (Chuck) who works about 55 hours a week and I do not. Although I do have a disability income, I feel that this is my way to contribute more to our household. Now of course this all goes out the window when my symptoms flare up but I do the best I can.

I sit out on an open field on a sunny day and watch my dog run free with elation. I have never had as much appreciation for the good moments in my day as I do now.

When I am physically able to, I get myself involved with worthy causes and other people. I volunteer with my church. I volunteer for whatever comes my way when I am able so that I can make a difference in this world, even if I am not getting paid for it. Sometimes I cannot do something like this for six months at a time and sometimes I can do something helpful several times in one week. I make it a point to never commit to anything on a scheduled ongoing basis because I have done that in the past and it just does not work out due to the unpredictability of my illness. I help out my friends with their children when needed. I also help out friends who are also facing their own health struggles.

Unless something very catastrophic is going on with my body, I try to get to the gym five to six days a week, even if it is just to go and float on a noodle in the pool or swim a few laps. Exercise has been a salvation for me. My hope is that as I take better care of my body, it will become stronger and this will help my illness.

I am constantly doing something to sustain and nurture my personal relationships. Because I have had to slow down, I have the distinct advantage of being able to give my relationships the time and attention that they deserve.

I have been blessed with several passions that I pursue during the week when many other people are at work and they are activities that are especially helpful when I am confined to the house or laid up in bed. Learning to cook and experiment with different recipes has been wonderful; especially since starting a gluten and dairy-free diet seven months ago. And I have also pursued my passion for writing. I truly believe that during the past several years writing has been my other salvation. I can easily spend several hours at a time writing for either my blog, a book I am working on, or for a variety of places that I send submissions to. It is through my writing that I have been able to connect with the world and help people in a way that I can no longer do as a nurse.

I spend time in a library or online learning something new.

Last, but of course not least, I have made a part-time job out of being a patient. This is by far my least favorite thing to do but quite necessary. As I was driving to Hartford last Thursday for an appointment, I did some rough calculations in my head. In the past seven days leading up to the appointment I was driving to, I had spent approximately seventeen hours in the previous week managing my illness. I know there have been weeks where maybe this was a bit less, although not by much and I know there have been weeks where this amount has been MUCH greater. This includes: driving to appointments, hanging out in waiting rooms, the actual appointments, blood work, phone calls to doctors, getting lab results, a support group, picking up prescriptions, calling in refills, calling insurance and disability companies, dealing with social security, taking medication, managing my dry eyes/mouth, saline rinses, setting up/cleaning humidifier, and preparing medications and such for travel.

Seventeen hours.
Like I said, never bored.

I truly hope that this essay has shown that it is possible to have a life outside of a 9-5 job or raising a family. There is more than one way to define yourself as a person. I used to think that if I wasn’t a nurse or if that I wasn’t anyone’s wife or mother, that I could not be of value to this world. Although there are great values to being all of those things, there is also great value in being many other things as well.

A friend.
A mentor.
A daughter.
A dog mommy.
A godmother.
A writer.
A human being.

As people with disabilities, we may not always be able to get out into the world every day to define ourselves. We have physical, mental, and emotional limitations that we need to work around on a daily basis. Most of our days may just be spent trying to meet our physical needs. But I also think that it is important that we allow ourselves, as much as possible, the opportunity to spend some of that time doing something in our day that allows us to define ourselves.

Not just our sick selves.
But as our true authentic selves.

Photo Courtesy of Chuck Myers http://myerscreativephotography.zenfolio.com/

Diet and Exercise Update

“Take care of your body with steadfast fidelity. The soul must see through these eyes alone, and if they are dim, the whole world is clouded.” ~ Johann Wolfgang von Goethe

I realized this week that it has been six months since I made the drastic change to eliminate all gluten and dairy from my diet. Wow, six months! I think that is the longest I have ever stuck with a change in my eating habits. I can honestly now say that it is much easier than it was when I started back in January.

People ask me from time to time if I think that eliminating gluten and dairy from my diet has helped my autoimmune symptoms. It has not eliminated the symptoms but at this point, I feel that it has helped. On a few occasions I have intentionally eaten something with gluten or dairy in it and I have noticed a change for the worse either in my level of joint pain and/or in my asthma symptoms. In addition to that, I never have any gastrointestinal issues at all anymore and my menstrual cycle is much more tolerable.

I have become frustrated with this eating plan at times, most notably when I came off of my last round of steroids and my joint pain immediately came back. I sat and wondered why the heck I was making my life more challenging by eliminating gluten and dairy when I was still having joint pain. The point that I was missing at the time though was that the joint pain was not as severe.

One of the biggest advantages that I have found with living a gluten and dairy-free lifestyle is the changes it has forced me to make in my eating habits. Changes that have positively affected my health, weight, and overall well being. For example, I have to plan out and think about what I am going to eat. Gone are the days of impulsively shoving something in my mouth because I am either hungry or because I crave a particular food. The options available to me at fast food joints and restaurants are much fewer and therefore I am spending much more time at home cooking meals from scratch which means healthier meals.

Many people say that eating gluten or dairy-free, as well as organic, is much more expensive but I would have to disagree. Yes, my food bill is more each week but it does not compare to the amount of money I save by not swinging by Subway several times a week or eating dinner out more than once every other week. I have also found that unless it is a homemade food, gluten-free products such as bread, muffins, etc. tend to be much more unhealthy and filled with more preservatives than non-gluten products. This has resulted in eating these items once in a great while and instead I choose whole foods such as fruits, vegetables, lean meats, nuts, and whole grains.

The second big change I made in my diet was making the decision to start the Weight Watchers program. This has literally been a godsend for me. I have found the program to be much more “whole foods” friendly than it used to be and I enjoy the fact that in addition to going to weekly meetings, I can also use their online program which enables me to work the program from my laptop or cell phone. I have found a meeting I really enjoy on Tuesday afternoons. Adding a Weight Watchers program to my gluten and dairy-free lifestyle has been a challenge but well worth it. Since my birthday, which was May 3rd, I have lost eighteen pounds. If you add that to the weight I have gradually lost over the past three years, my body is now fifty-five pounds lighter. Oh yeah.

I continue to go to the gym anywhere from four to six days a week. Exercising has become a more difficult task since coming off prednisone and sometimes I just want to say “the hell with it” and quit. But I don’t. I am committed to changing my life and I cannot let joint pain, fatigue, and migraines get in the way of that. I have however changed some of my routine around and have cut back on the length of time I am exercising until I can get my symptoms more under control. I have started taking Pilates classes which was a big step for me and I am in love with it. Right now my exercise regime consists of Pilates, water aerobics, lap swimming, the cross trainer, and rowing. My goal is to be able to increase the time of my workouts and try some other different classes once my joint pain has improved.

I love to exercise. Shocking but true. For most of my life it has been a chore and something I dreaded doing; when I did do it. It is different now though. It is a necessity for me mentally as well as physically. I have worked hard to find activities that are not only safe for my joints but also fun. Despite the physical challenges that I still have, every week I find that my body is getting stronger. Every time I swim a lap in the pool of sit on the mat in a Pilates class, I feel like I have more control over the body that I have spent so much time cursing.

My hope is that as I continue to lose weight and build a stronger body that more of my autoimmune symptoms will lessen or even disappear. If not, I figure the worst that can happen is that my new lifestyle will help prevent future issues such as heart disease, diabetes, and cancer. Not to mention how much better I will feel about myself.

Works for me.

Photo Courtesy of Google Images

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