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Category: Sjogren’s Syndrome (Page 23 of 23)

False Assumptions

July 13, 2011 / / 14 Comments
Be kind, for everyone you meet is fighting a hard battle. ~ Plato

https://www.marineetstamp.com/a5lq51liyps “Honey, you’re so lucky. You should be grateful you are so young! You don’t have to take all these medications and deal with being sick all the time like the rest of us.”

Cheapest Tramadol Online Uk Oh come the hell on, are you serious? The statement was made to me recently in a doctor’s office by a woman, maybe in her seventies, who is probably quite sweet normally. At that moment though, I just wanted to lunge at her and shake her incessantly. Not one of my finer moments I tell you! It was just myself and two other women sitting in a mini waiting room after our hearing tests; waiting to either see the doctor or take home the person we were responsible for driving there. I had made the mistake of looking up from my very challenging game of video poker and I guess the woman thought that was a perfect time to snag me into her “woe is me” session with the other absolute stranger.

click here I know, I know, the poor woman probably didn’t mean anything by it. Yes, you could say because I felt down and out that maybe I was oversensitive to her comment. But I have to say, it struck a nerve because it was just another example of how easily we make assumptions about people based on how they look. My autoimmune disease is what many in the chronic illness world would consider an “invisible illness” most of the time. Anyone who has spent more than ten minutes with me knows that in the past few years, I have logged in more hours in doctor’s offices and been on more medications than many people are in their entire lifetime. It is a fact I am not proud of and I can be well, a little sensitive about.

follow site I really could have ignored the comment because reality was, my health concerns were none of her business. However I also felt strongly that I needed to speak up and educate this woman who made such a thoughtless comment to a stranger, however innocent it may have been. So in my head I quickly calculated if it was worth it to educate her about how looks can be deceiving or to just let it go because in the end, I would probably benefit the most from taking the path of least resistance. I decided to compromise. I turned to her and in the most patient voice I could muster, told her that I wished because of my youth that I was healthy and medication-free. I said to her that in actuality, I am currently taking six prescription medications, not to mention several other non-prescription ones because I have a chronic illness that has been difficult to get under control. Her response was simple. She just said “oh, I see” and then turned away to continue comparing notes with the other stranger. I could tell that I caught her off guard though as she appeared slightly embarrassed and I decided finally to just leave well enough alone.

https://mocicc.org/agricultura/57e6l37b What is the significance of this one simple interaction? Well, like I mentioned, it is a classic example of making assumptions based on what our preconceived notions are of people’s god given physical appearances such as age, weight, skin color and the like. This woman assumed that because I am young, that I am healthy as well. Kind of funny if you think about it because I am young and yet was still sitting in a waiting room for people having hearing tests! In relationship to medical issues, I have found that in this society, looking well is a disadvantage. I have not only encountered it personally, but have met many people who have also faced this challenge. If you have a disease such as lupus, crohn’s disease, depression, or fibromyalgia, there is usually not an outward sign of the fact that you are ill and/or have a disability. Wheelchairs are a concrete sign. So is wearing a scarf because you are losing your hair from chemotherapy. Being so fatigued that picking up three items in a grocery store makes you want to cry is not an outward sign. Crippling pain is not always an outward sign. I am in no way implying that people with no outward signs of illness have it worse or better than those that do. It does mean however that those with these invisible illnesses oftentimes have more explaining to do and well, that does seem to be a bit unfair; as well as tiresome and frustrating.

Now I am guessing that some of you are sitting there and wondering why a person with no outward signs of illness feels like they have to explain themselves anyways. Plain and simple, people just don’t get it sometimes and they can be pretty vocal about that fact. Doctors who don’t know much about autoimmune illnesses oftentimes don’t get it.  The government who determines if I am eligible for social security disability took almost two years to get it. For the most part, I am blessed that many people in my life realize that even though I may look alright, chances may be good that I may not be. The reality is though that I do have to explain myself on a regular basis. I have to explain why after being able to go to the gym one day; I may not be able to meet for a walk with a friend the next day. I have to explain why I cannot presently work. I have to explain the fact that after doing spending several hours volunteering in some capacity, I am down and out for a full three days. I know I look well most of the time. I actually DO feel well a lot of the time but when I don’t, it’s significant. It’s part of having a chronic illness.
While I was writing this blog entry, I thought of the quote from Plato that is used at the beginning of this entry and I decided to include it. I love it, but it’s not entirely accurate in this situation though because the woman in the waiting room was not being unkind. She was making assumptions based on her own ideals and preconceived notions. I think a better rewrite of the quote, for this blog anyways, would be: “Be thoughtful and think before you speak, for everyone you meet is fighting a hard battle.” Lesson here is that you don’t always know exactly what battles other people are fighting, whether they be strangers or even friends/family members. I know I have made assumptions about people based on their appearance or behavior and have been dead wrong. So today I am going to try and remember to think before I speak. I encourage you to do the same….

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Acupuncture Part Two: The Benefits

July 7, 2011 / / 7 Comments
I am sitting in a comfortable reclining chair with my feet up, my eyes closed, and soft music playing in the background. It has been about ten or fifteen minutes I am guessing. I am not asleep but I am very aware of how relaxed my body has become. I am sleepy and calm. I feel no tension. The headache that has plagued me for days has disappeared. I am not in a spa or on a beach. I am at my acupuncture appointment.

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Earlier this year, I wrote a blog entry entitled Acupuncture Part One: The Experience in which I discuss my first ever experience with acupuncture. It has been almost six months since that entry, which was written about two months after my very first experience with acupuncture. All this time later, I am still amazed at the various benefits I have reaped from this form of Chinese medicine. The way my acupuncturist Ben, from The People’s Acupuncture Clinic, explains it is that in Western medicine (what we know as conventional health care here in the United States) it is the patient’s symptoms that are treated. In Chinese medicine, it is the entire body that is treated. That makes sense to me. When I go to the doctor complaining of difficulty breathing due to asthma, I am given an inhaler to reduce inflammation and open up my lungs. When I go to the acupuncturist, I have needles inserted and/or am given herbs which although may be targeted for these particular symptoms, also restore balance to my qi. The end result is that after several sessions or sometimes after even just one session, my body goes back to a balanced state. Instead of treating just the symptoms, we are treating the cause (the body’s imbalance) therefore overall restoring health.

https://lpgventures.com/69vgufunasn My original purpose for starting acupuncture treatments was to help deal with symptoms related to an autoimmune disorder. Although my symptom list at that time was more extensive than most people’s grocery list, my primary focus was on alleviating the joint pain, fatigue, and difficulty breathing related to my autoimmune disorder. I knew from what Ben told me and what I had read online that even though positive effects from acupuncture can occur as soon as after the first treatment, it would probably take a bit longer for me, as many as twelve to fourteen sessions. I really wanted more symptom control and was interested in avoiding as many steroids and other autoimmune drugs as possible so I was committed to the long haul. I didn’t get sick overnight and I knew it might take some patience to get myself well.

Ordering Tramadol From Canada It did work too. I started off by doing sessions almost every other day for the first ten-fourteen days, then to twice a week, and eventually to a point where I go every two weeks unless there is an acute issue. As a somewhat skeptical Western medicine health care professional myself, I was quite surprised at the results. My joint pain which I had been managing with heavy duty autoimmune drugs was improved with taking Motrin and not all that frequently even. I did still have some difficult days but found that between the acupuncture and other non-medication pain management techniques, I could get through those tough days. I was sleeping better and having an easier time of handling the autoimmune related fatigue that could cripple me for most of the afternoon. After we added some prescribed Chinese herbs to my acupuncture sessions, I had much better control over my asthma symptoms. I went from being on oral steroids, a steroid inhaler, and a frequently used rescue inhaler to just a smaller dose of the steroid inhaler and a very occasional use of my rescue inhaler. I even started singing in my church choir, something I had always wanted to do!

https://www.yolascafe.com/7wlqa86elm2 There was also other autoimmune symptoms that improved, some autoimmune related, some not, and some where it was anybody’s best guess. Middle back pain that had plagued me on and off (mostly on!) for over a year finally went away. Some of my dryness symptoms related to the autoimmune disorder, called Sjogren’s Syndrome, got better. Other issues such as seasonal allergies, sinus inflammation/infections, and an injured knee improved or even disappeared. It has gotten to the point where if I have a medical issue, I typically will actually meet with my acupuncturist first before seeking medical attention from a western medical doctor because over and over again, I see positive results without unnecessary medications, tests, and such. My biggest success was managing to stay off the steroid prednisone for almost six months after I started acupuncture treatments. Prior to that, I was on it on at least ten separate occasions, lasting anywhere from days to months, within a time span of approximately two years. I think it is important to state that I am not implying here though if I thought I was having a heart attack that I would go to my acupuncturist before heading to an emergency room. I strongly believe that there is a place, in my life at least, for some Western medicine. However, I am making a concentrated effort to reserve Western medicine for emergency type situations only, as much as I possibly can.

https://getdarker.com/editorial/articles/wmnw9xd I have also experienced many benefits from acupuncture that do not have to do only with physical symptoms. My loved ones as well as I have noticed a significant difference in my stress level and how I cope with everyday issues, as well as crises. Now, I have also had other positive lifestyle changes which could contribute to this and I have not done an actual research analysis on myself. However since I started my treatments last November, I am much slower to anger. Things that used to frustrate the living hell out of me are no longer such a big deal. Anxiety over tests and procedures has dropped dramatically and I am much more flexible in my interactions with other people. I know some of this, if not most of it, is related to the acupuncture sessions because I can physically feel my body relax about ten minutes or so into my treatment. I have gone to sessions immediately after attending a friend’s funeral or during other stressful times to find myself leaving the building in a better frame of mind and with clearer thinking. I don’t need research studies to prove that!

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Finally, the last benefit I would like to mention is that which is gained from working with a Chinese medicine practitioner. Ben is the only one I have ever seen so I don’t have a basis for comparison. That being said, I do have a basis of comparison with western medicine practitioners. In all fairness, I have had a few really great doctors in my lifetime. I have worked with some fantastic doctors as well. However the last few years have been like a three ring circus for me in dealing with doctors. Oftentimes I am just a person taking up a ten minute slot in their exam room. I have been treated like a number with no regards to the emotional or mental impact that my illness has had on my wellbeing. Of the twenty-five or so doctors and specialists I have dealt with in the past two and a half years, not one has ever discussed the role of nutrition with me in regards to my autoimmune disorder. More often than not, I am looked at as a compilation of various anatomical systems and symptoms rather than as a whole person.
 
 
 
In my acupuncture clinic, I am treated holistically and with compassion. Despite the fact that it is a clinic and I may be one of seven or eight other people in the room, I never feel rushed or disrespected. I am taken seriously and just as important, I am heard. It is truly a collaboration between patient and practitioner. The success of my treatments depends on my ability to communicate what is going on with my body and Ben’s ability to translate that in order to provide the best treatment. For me, that is truly the ideal environment for optimal healing and optimal health.

The Prednisone Wall

June 13, 2011 / / 8 Comments
“Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.”

https://www.mbtn.net/?p=sy79lfe ~ Michael Jordan

I am staring up a giant wall that I like to call the prednisone wall. For any of you who may not be familiar with prednisone, let me elaborate. It is a medication called a steroid used to treat a variety of medical disorders including asthma, arthritis, inflammatory bowel disease; basically any type of disease that involves inflammation. It is a blessing and it is a curse. It can save your life and when not used properly, it can kill you. Prednisone is one of the least expensive medications I can get my hands on, but it comes with quite a scary list of risks and side effects, including but not limited to: diabetes, depression, insomnia, memory loss, ulcers, bones loss, cataracts, life-threatening infections, the list goes on and on. You know how when you get your prescription filled at the pharmacy and it comes with the medication fact sheet listing all the possible side effects? Yeah, well the problem with prednisone is that if you are on it long enough or often enough, you WILL get those nasty long term complications they warn you about. Guaranteed.

source I have been on and off prednisone at least ten times in the past two and a half years for an autoimmune disorder. Sometimes it has a course of five days but more often than not, the course has run at least four to six weeks; sometimes even months. I have never in my life had the type of love-hate relationship with anyone or anything that I do with this medication. It has helped relieve joint pain that was so severe that I wished I was dead. It has helped me to breathe. It has relieved inflammation in my sinuses and in my stomach, allowing me to eat normally again. It has been my lifesaver.

Tramadol Buying Online It has also been my curse. I have been on it enough times now that I am better prepared for what will probably come in terms of side effects; although every time does seem to be a little different depending on the dose and how long I am on it. Until four days ago, I was off it for six whole months; a record for me. However my rheumatologist and I agreed that it was time to go back on it due to the possibility that I have autoimmune induced hearing loss and the need to try and prevent further complications until I am evaluated by an ear specialist. It was also time to try and settle down some other symptoms that just were not getting better on their own.

https://dcinematools.com/8z6cvunty So, today is day four. Although the insomnia has not been a major issue this time around, the hunger and food cravings were in full force over the weekend. If you’ve never experienced prednisone, you don’t know what you’re missing. You eat a full meal and thirty minutes later you are starving. All you want is sugar, refined carbohydrates, anything bad for you. No exaggeration, I could eat a full meal every two hours and still be hungry. I could sit down for dinner and eat a whole large pizza by myself. And half a loaf of garlic bread. And a plate of brownies. I would still be hungry in two hours after this elaborate feast. Food is all I can think about when I first start prednisone. I made the decision before I took that first pill four days ago that I was just going to do the best I could the first 48-72 hours. If I was hungry, I was going to eat all the calories I was hungry for while trying to keep it somewhat healthy (that kind of worked…a little). Usually after that period, the hunger and cravings settle down. I was going to cut myself some slack and that I did. I got as much exercise as I could as well.

source The prednisone wall also makes me jumpy and restless; another issue that usually settles down within 72 hours. The slightest amount of stress can set me off and I feel like I just want to jump out of my skin. It used to get so bad, that I would have to take anti-anxiety medication for it…or drink lots of alcohol…or both. But I can’t do that now. I have worked too hard to get myself healthy to be throwing all that junk in my body! So instead, I am resorting to every self-care and anxiety relieving technique I have ever learned. Surprising result: they work. The trick is to listen to your body, know when you need to step back and rebalance. Then figure out what works. For me, it usually means time alone at home, with low lights, candles going, no TV or excess stimulation at all. I take a hot shower and then surround myself with things I love (and that don’t talk to me!) such as books, magazines, scented lotions, etc. It is about changing the environment.

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My last hurdle to get over the prednisone wall is the crazy ass mood swings that it produces. I know this issue is not exclusive to me, but it can be a nightmare. It is also an issue that can settle down quite a bit after the first 72 hours, but then resurface the second the doctor decides to start weaning me off the medication. I am not talking the “weep a little while you watch Lifetime” mood swings. More like one minute I am having a very rational discussion with my boyfriend and the next minute, I am crying uncontrollably; for no reason. There is no rhyme or reason. It requires a lot of explaining on my part which is hard when I just want to curl up in a ball and cry. I am much more impatient and easy to anger. I can be difficult to be around which is now even harder because I am not living alone. In essence, I am not me. However I have found the best way to deal with this is to be upfront with people about the medication and keep myself out of situations that will get me into trouble, so to speak. If I am having a particularly difficult day with the crying, I just hole myself up in my house and let myself cry, instead of trying to fight it all day. Instead of struggling and feeling guilty, I stay home and take care of myself until I can get through to the other side. The other side does come.
These are all hurdles that one little tiny pill throws in front of me every time we get back together…the one that I love and I hate so much. I have discovered a lot about the ways I can climb the prednisone wall instead of giving up and just letting the medication control me. Hopefully this will be one step closer to ending the love-hate relationship I have with prednisone and the beginning of a more peaceful coexistence.

Tramadol Buy Online Usa Author’s Note: Please feel free to share your good and bad prednisone experiences below!

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Running A Race I Cannot Win

June 10, 2011 / / 3 Comments
From the bitterness of disease man learns the sweetness of health. ~ Catalan Proverb

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Most of the time I feel like I am running a race, maybe even more like a marathon. There are hills and conditions working against me. There are people cheering me on. I am not running to win; I am just running to cross the line and finish. The problem with this race though is that there is no finish line. This race never ends.

https://alldayelectrician.com/k81ml2v I was driving back from an appointment with my rheumatologist today and these are the thoughts that came to me. After three exhausting hours at the medical center where my doctor is located, I was just beat. I have this autoimmune disease called Sjogren’s Syndrome (well they are pretty sure I do anyways) and just when I think I am winning the race to get better, I get pushed back to the previous mile marker. I guess it could be worse though, I am just grateful that it’s not back to the starting line.

As far as doctors go, this new one is pretty top notch in my book. There are issues with communication amongst her office staff and her, but trust me, there are more stressful things to deal with than that when it comes to doctors. I was doing pretty well physically there for a while, considering that about two years ago, I was having a difficult time even getting myself into the shower. But I get so frustrated when I do better for a while and then I approach the hill again in the race. It is even harder when the hill is one I have not climbed before.
I think I have adapted so well to the race that I sometimes downplay when I am struggling. I don’t want to admit that maybe things aren’t quite as good as I would like. Once the doctor and I got talking today, it was clear that things are hitting a curve in the road. My asthma is flaring up from the extreme heat here in New England. I have had issues with sun sensitivity and rashes. Joint pain, although well controlled during the day, wakes me up sometimes during the night. Sores in my nose from extreme dryness. And the big granddaddy of them all, a significant hearing loss which is not getting better. Maybe autoimmune related, maybe not. I have gotten the impression from this doctor that she does not get excited too easily and she seemed concerned enough to want to get my hearing evaluated right away. Then, I left the office with a prescription for steroids (again), labs, and an x-ray.

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I know that so many people have obstacles much bigger than I do in their race. I am very well aware of the progress I have made in my daily functioning and health over the past few years but the bottom line is: I don’t want to be in this race anymore. I don’t think that too often because I have had a numerous amount of blessings come from this illness. For just a day though, I want to remember what it’s like to jump right out of bed and start my day without pain. I want to be able to go to a job. I want to not have to cancel plans when I am sick. I want to go sky diving and zip lining. I want to be well enough to care for my parents when they enter their more senior years. I want to be healthy and well.

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I guess the problem though is that with a chronic illness, you cannot look at it like a race because as I mentioned a few paragraphs previously, there is no finish line. It’s not like when I had cancer and I got treatments; then I was cured. There is no cure for Sjogren’s. There is not even an approved treatment for it. The best I can do is to continue to live each day as fully as I can to the best of my ability. I can keep writing. I can keep cherishing my friends and family. I can keep laughing. I can keep trying to make a difference in the world. Most importantly, instead of treating my illness as a race, I must treat it like a journey. One that I must approach gently, yet with determination, courage and laughter.

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