Time To Vote..

The Co-Morbid Disease of Our Presidential Election

Sjogren’s Syndrome and our Presidential Election Season share similar symptoms. Let me start by saying that I hate politics. Has it always been that way? No. There was a time many years ago when I actually still thought that my vote counted and I was helping to make positive changes to our society. At some point however, it became clear to me that my thoughts, feelings and desires as a U.S. citizen are really meaningless. I finally decided that I could effect no change or help make a difference, and as a result became very apathetic where politics are involved. I like putting my efforts where I know I can make a difference.

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Can You Relate?

Through the years I have watched politicians attack, denigrate, throw mud at each other and worse. I did align with a party many years ago for the few times I decided to vote. I have even had a few friends or acquaintances react with horror when I said that I hate politics and don’t vote. They quickly reminded me that I could not complain if I did not like the way things were going. Hello…when I did complain, no one listened or cared. See apathetic.

I started thinking about Sjogren’s symptomology and our country’s political symptomology and how they are alike. Let’s compare the two:

  1. Both are chronic
  2. Both can (and are for many) debilitating
  3. There is no cure
  4. There are few effective medications
  5. They are both painful
  6. There is a lot of distrust with both (doctors who don’t believe us ~ politicians we don’t believe)
  7. Both are fatigue-producing
  8. Both can be depression-producing
  9. There are lots of sub-par professionals who know little about either
  10. Both make us victims

 

And So It Goes..

So here I am like all of you…trapped in the political firestorm of all of our lifetimes. We are amazed, we are appalled, we are disgusted,  we are in shock and it is definitely ‘Reality TV’ at it’s absolute worst. Just when we think it can’t get any worse, another batch of flaming arrows are shot.

And we common citizens of this diplomatic society are even seeing our relationships effected. Family members and “friends” are tense around those who do not share the same political views. Social media is infected with snarling commentators who are attacking like a bad swarm of locusts. It seems as if everyone is loaded and ready to fire with their arsenal of arguments to any intruder who infringes on their hallowed political ground with anything less that raging support for the candidate they support.

But A Funny (Not In A HaHa Way) Thing Happened..

Me..SjoDry..the least political person you will ever meet has gotten sucked into this abyss (and almost over Thank God) political election season. How you ask? I will tell you. As you all know my fellow Sjoggies, our serious and chronic medical condition(s) is/are expensive. I won’t launch into all of the minutiae here. But for the sake of this post, I am going to share a few specifics.

Like many of you, I require multiple specialists for my various organ systems that have been attacked by Sjogren’s Syndrome. I routinely have doctor’s visits, tests/MRI’s and take a lot of medicines, as well as over-the-counter medicines and supplements.I should add that I have a severe immune deficiency called Common Variable Immune Deficiency (CVID) for which I must take IVIG infusions every other weekend. These infusions cost over $5000 each. Because of this, it was necessary for me to choose a comprehensive insurance policy for just myself (no one else in my family). I should also add that two years ago when I obtained this policy, it cost me $750.00 PER MONTH. I searched for help from non-profits to help me defray the costs of my ridiculously expensive insurance. Thank God I was able to find a non-profit related to the specific brand of infusion medicine that I take, which helped the first year I had the policy.

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Now Where Are The Benefits?

In spite of the help, we still struggled to pay the premiums because we felt that I could not get by on a less comprehensive policy.  Then the Obamacare insurance program was passed. We were immediately informed that 2 of the policies that my husband and our employee had would not qualify under the Obamacare program. So we had to re-structure how we previously offered insurance to our employee and re-shop those policies for the only policies that we could find (more expensive ones).By the way, so many of the insurance companies have now dropped out of the marketplace, that Pennsylvanians have two insurance company choices.  At that same time we were contacted by our insurance provider, we were informed that my policy rate was changing and would go from $750.00 per month, to $950.00 PER MONTH!  We thought seriously at that time about changing policies. Of course you all know what a hassle it is to change policies, try to find a policy that will allow you to keep ALL of your multiple specialists and Rheumatologist that you require and a policy that would approve the same type of infusion medicine that I require. No easy feat. We decided that since we were receiving some help from the non-profit organization, we would keep the astronomically expensive policy. That worked fine..until a few months later when we were contacted by the non-profit and informed that I no longer qualified for their help. (We are self-employed and our earnings fluctuate).

And Now….

In between all of the ugly political ads, debates and snarling political party-warriors, I received a letter from my insurance company last week. My policy will be changing. The deductible has gone up significantly for the same coverage and the price will now be: Are you ready for this? $1450.00 PER MONTH!!!! A whopping 57% increase.

So there it is folks, I have no choice but to vote in this election. Everyone has their own reasons for the candidate that they have chosen. And I, my Sjoggie-Mates, have just shared with you, mine.

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Reluctantly I Will Vote

Looking forward to November 9th and beyond…I think.

May the polls go the way you want them to.

SjoDry

 

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A FREE Prescription For Wellness

Mindfulness

Greetings fellow Sjoggie-Mates. Awhile back I wrote a post about: “Are We Our Signature Lines?”  Essentially I questioned whether or not my Sjogren’s/Chronic Illness defines me. I am not quite sure what I decided at that time, but I have been giving it a whole lot of thought and consideration (which is where I have been for the last two months since my last post).

I am a person not just a diagnosis

I was moved to start reading and researching about ” Mindfulness.” Have you ever met someone who is the happiest, kindest, friendliest, most patient, peaceful & positive person you think you’ve ever known? I have and I am married to him (lucky me!) I have always said to my friends, family & myself, that my husband is my role model. I love all of those wonderful attributes about him and others I meet who possess the same.

I have never really thought of myself as a “negative” person. I mean we can all look around and point our fingers at someone who is always negative and sees the glass half empty no matter what. Afterall, it is much easier to make a judgement about someone else rather than to take an honest assessment and magnifying glass of our own behaviors and characteristics..right?!

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An Honest Look At Yourself

I think that we should all take a close look at ourselves and where our attitudes reside.I say this, not in an effort to point out our personal flaws, but as a way to examine how much our mental attitudes effect our wellness.  I don’t think… I know that after years and years of chronic illness for as long as I can remember, my attitude slants heavily to the negative. And those negative tendencies tend to insidiously (just like the chronic illness of Sjogren’s) permeate my attitudes and approaches to other aspects of my life (personal and business).

I have to ask myself, as I think we should all do, how well these negative tendencies and responses are serving us? It is likely that we have all heard how much of a role a positive attitude plays in our healing and day-to-day functioning. I don’t know about you, but I have done a poor job of internalizing that reality..and it is a reality.

Winnie The Pooh

And The Survey Says…

Evaluate. Take a good, hard look at how you react and respond to the daily events and situations that you find yourself in. Cut off in traffic…what’s your response? Large appliance repair with limited finances, what’s the first thing out of your mouth? Huge doctor bills and insurance hassles…what’s your attitude? Never-ending pain and medicines that only marginally help or not at all, how’s that feel ? The new doctor you just saw, treated you like a neurotic head case…what thoughts ran through your mind? Your friend or family member pushing your hot buttons, how do you react? Do you see what I mean? We are all bombarded with daily situations and events that require us to choose our responses and attitudes to them. And yes…it is a choice.

These life situations happen every day to every one of us, but they do not have to automatically generate a snarling, ‘victim-is-me’ attitude. With the daily assault of life’s challenges, it is easy to see how we can all slide into a negative mode of functioning without our even realizing it. And let’s face it, chronic illness, just by virtue of everything that goes with it, is mostly negative. Most of us function on auto-pilot and for the most part, hardly look at how our mental state contributes to our physical health (at least this is true for many folks.)  And unfortunately, the “keeping a positive attitude “ is not an occasional proposition. It doesn’t work unless we keep it and use it every day for everything we face. It needs to drive our lives in every thing that we do.

Have you ever noticed that when we go through our days..we tend to focus on the negative as opposed to the positive things that happen to us? Instead of focusing and sharing the positive events of our day..we pour out the horrible day we had like machine gun rapid fire to our spouses, significant others, friends or anyone who will listen. I think our media/social media sensationalize the negative and I can be guilty of that as well. And all of that negative, poor me stuff (day after day) has a way of shaping us into the overly negative people we really did not intend or want to be…can you relate? Has this happened to you?

So What’s The Answer?

 

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Well, as they say, recognizing that there is a problem is part of the battle. So I suggest a lot of self-examination and introspection is in order. I am in that mode now and am discovering some wide-eyed revelations about myself. I also think that one has to commit to change. It is not easy to un-do years (or a lifetime) of negative conditioning. So why should we do this, what’s the benefit? As a Sjogren’s patient and support group leader, I am always researching Sjogren’s treatments and research developments to pass on to other Sjoggies. I know all of the gold standard medication treatments. Also, I see suggested autoimmune protocol/other diets and recommended herbs/ supplements. But what I don’t see emphasized,  are ways that we can contribute to our own healing. The medical model as it exists, put us in the position of patient (victim). We are led to rely on western medicines and treatments. Yet, one of the most effective ways that we can help ourselves, which I might add is FREE, is not routinely talked about. And I am not talking about one of your doctors suggesting that you see a counselor, as many of us have heard. Because that can feel a lot like a slap in the face depending upon how it is presented. I am talking about a physician who truly understands and conveys the importance of maintaining a positive attitude for healing. There is a difference in how those words are presented to us and how we receive and act on them.

Serious Consideration

If you are finding yourself thinking Wow…maybe I am more negative than I realized, perhaps it is time to make a few changes. I will state the obvious, making a personal commitment to be more positive in your life, will never be a bad thing. But it could serve to make effective strides toward healing and how you accept and deal with your chronic illness on a daily basis.What would happen if each time you found yourself angry, frustrated, depressed, critical, fatalistic, fearful, etc., you stopped in that moment and asked yourself where is the emotion coming from? Also, ask yourself: Is this emotion serving me well? I read something a long time ago, that has helped me through the years in such moments. The piece that I read told me to ask myself in those challenging moments or times that I was anticipating or experiencing something bad..” What’s the worst thing that can happen?”  Of course my negative mindset had loads of far-fetched scenarios that I could fill in the blank with. However, even the absolute worst scenario could happen and the conclusion is the same..there is nothing I can do about it because I have NO CONTROL over it. If it is going to happen, it will happen. And it is likely that whatever happens or has happened will not be the end of the world as I know it. So why waste time with it. Being negative and anticipating the worst, negative outcome that my overly active brain & imagination can come up with does not help me move forward, face problems effectively or help my physical healing.

Affordable Change

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Guess what? Making positive attitude changes has never been so easy. I have read about 6 books in the last few months..books that I bought on Amazon for one penny with a small shipping charge. I even got one book on my kindle a couple of nights ago..for FREE. I have also added meditation with healing imagery to my life changes. I find it very relaxing and wish I had started it years ago.

SjoDry RX

The bottom line is that you are the only one who can make positive changes in your life. No, you can’t control your diagnosis(es), but you can control your coping responses and attitude in general.  And there is no point in being miserable in  both body and attitude, right?!

So here’s to making positive changes in your life!

Namaste (I Bow To You)

SjoDry and Relaxed

 

 

 

 

Posted in Random, Searching for Answers, Uncategorized | 3 Comments

A SjoDry Update

Discouraged

Debbie Downer

Well let’s see…I last wrote about being at Rock Bottom and so I was. I was tired of chronic illness, tired of condescending doctors, tired of good doctors; tired of taking meds, tired of not having answers, tired of living each day with horrible pain, tired of not knowing if chronic illness and feeling horrible were to be what I had to look forward to forever, exhausted and depressed with medical bills and so on and so on. You get it I know, because we all live it. And not to be a “Debbie Downer” as they say, but it is pretty dang hard to feel happy and positive, when one feels so badly each day.

What To Try?

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For many months, I researched various food plans. If you’re like me, you read these things, but really have no idea which eating plan would work best for a person battling autoimmune disease. There are merits to each. Some folks would swear by one method, while other people indicated how ineffective the same approach was. I always ended up at a place of indecision and confusion as I have told you before. For awhile, I tried to figure out how I could marry certain features of different food plans to arrive at the one homerun which would be the answer I had been searching for. That never happened, at least not at my creation.

A Timely Meeting

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It was in May of 2016 that I learned about an Alternative Medicine Doctor from Florida who does very economical phone consults. I learned about the doctor from a friend who has been greatly helped by the protocol that the doctor put her on. With a “what have I got to lose attitude”, I called to set up a phone consult. I called her on May 24 for our one hour phone consult. I was very impressed. It wasn’t just her easygoing style and the low cost of the consult. I could hear her genuine concern and desire to help me. I have never had a doctor who promised to address every symptom I have and also, to try to get me off of all of my medicines. I was excited and hopeful, but realistic.

So What’s Been Happening?

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Let’s see. I started the Paleo Diet or should I say the Paleo Food Plan on May 24th. Dr. King explained that she would be treating me with the Proteolitic Enzyme Therapy Approach. So what is that? From my research I learned that high potency proteolytic enzymes have an immense ability to improve vital health processes. This includes their ability to enhance processes of detoxification, normalize and reduce inflammatory processes and to enhance the production of white blood cells and the body’s defenses. Proteolytic enzymes can stimulate immune cells to destroy fungus, mold, bacteria and viruses….all of which I need.

So with that knowledge, I started my ‘several times a day’ supplement schedule, as soon as I received them in the mail. Admittedly, I have never taken so many pills in my life, but the way I started to feel (very soon after starting the protocol) has reinforced my decision to continue my natural approach to my health. I will add here that I have not abandoned my traditional western medicine approach, but am enhancing it.

I am not going to tell you what my initial weight was before starting this plan (what girl would do that), but I will happily share with you that I have shed 13lbs. to date. But more important than my weight and the impetus to start this plan, is that I am feeling better. I have been able to stop taking my high blood pressure medicine, am tapering down from my Prednisone, am having more energy (no twice a day energy drinks needed anymore) and less pain and am just feeling better in general.

Have I stuck to the plan 100%? Well almost. I have read that if you are following the plan at least 90%, that is acceptably compliant.Does that sound like caution: rationalization ahead? I recently attended a wedding down south. As with any down-home southern get-together, there were all of the typical food delicacies (fried chicken, grits, biscuits, macaroni & cheese, baked beans, banana pudding and more). It was not easy to stay on plan…if I didn’t want to starve. I will admit to succumbing to the Mini Moon Pie and part of the giant S’mores favor after a couple of glasses of wine at 1:30 a.m. before falling into bed. As punishment, my stomach let me know that it did not like the food deviation. My stomach was quite unhappy for two to three days after the wedding. The good thing about this, is that it underscored how much the Paleo/GF/Sugar-free/Dairy-free/Vinegar-free plan I am following, is helping me. If your chin just dropped at all of the food groups that I am not having listed above, just know that this is only a temporary condition. After the first phase of my plan, Dr. King says that I can slowly add some previously enjoyed foods back into my diet. But only when paying close attention to their effects on my body. I’m okay with that.

Is It Working?

So far so good is my answer. Truthfully, I felt so bad when I started this strict regimen that I was desperate for some relief. The improvement in how I feel is what is reinforcing my ability to follow the plan with little deviation. There have been moments which have made me feel like the old me! So what is that worth?! To me..it is worth a lot. If I feel this much better at the beginning of the plan, think of how much better I stand to improve as I continue the program for many months. I am more than encouraged about my health, I am excited. And that is a feeling that I have not had for a long time..until now.

 

What Would You Do?

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Remember that cute commercial about, What would you do for a Klondike bar? What would you do to feel like the old you again? This is a very individual journey for each of us. What works for me, may not work for you and vice versa. But when you feel like you have gotten stuck at a horrible place with few options, sometimes you gain the strength to try something that you didn’t think you could ever do. If you had bet money that SjoDry could never give up sugar or chocolate…a few months ago, you would have won that bet.Not now. My new mantra is: I want better health more than I want that ______________!

 

I am hoping that this post finds you feeling as well as possible. If you are feeling ready to throw in the towel, don’t. It may be that the right solution has not found you yet. Am I cured? Of course not. But I am grateful for whatever improvements I can get. And if that means I am able to do even a few of things that I used to enjoy…well I call that a  homerun!

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SjoDry and mending…

 

 

 

 

 

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Rock Bottom..Are We There Yet?

Reality Slap

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Have you ever been at “Rock Bottom”? Are you still on your way there? Or do you even know if you have (as they say), hit rock bottom? I don’t know what made me start thinking about this. I suppose for the last several days I have been contemplating all of my chronic health problems and the limitations they are putting on my life.

I just celebrated my 35th year wedding anniversary with my husband yesterday and I am also about to have a birthday on June 1st. I found myself remembering the “old me”. The me that was full of life, full of fun and enjoying my life (emphasis on enjoying my life).

I thought about the current me. The person who spends an inordinate amount of time searching the internet for health answers that I can’t find from doctors. The person who has exchanged fun hobbies for online health forums to search for answers and connect to people who understand this unchosen journey. The person who has seen every Hallmark movie at least 3 times and has almost memorized every Leverage show on TV. What happened to that woman who used to have boundless energy and enthusiasm for everything?

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Searching For Answers

I couldn’t help thinking that we “Sjoggies” remind me of mice in a maze. Except our destination in this vision has us all trying to get to symptom relief at worst and remission at best. I’m tired of all of it folks. I’m tired of running on a wheel trying to get my health back  and getting no where. It occurred to me that most people  look forward to their weekend so that they can sleep in, catch up on housework or laundry, have fun and/or rejuvenate in general. But that doesn’t happen on my weekends. My pain and fatigue never take the weekend off. I feel just as bad on Saturday and Sunday as I do the rest of the week. And the more medications that I add to my life, the worse I feel! Can you relate Sjoggie-Mates?

Observations

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For those of you on the Sjogren’s World Forum, you will recognize that recently there was a post that sent electricity throughout the community. The person talked about his journey to better health and what he called “recovery”.  In all of my years as a forum member, I had never seen such an uproar over a post. I thought about that post and wondered about why people became so “up in the air” over it? Was it semantics? Was it because this person had chosen a very strict diet and supplements to achieve his better health? Could some have been jealous that he felt so great and we feel so poor? Was it because at our core, we question whether we have what it takes to tow the line to such a strict and unwavering food & supplement lifestyle? Did it feel like a dangling carrot? Maybe some have already tried it without committed success.

Many of us have tried various dietary approaches. I will be the first to admit that I’m confused. One book tells me to be lose meat & dairy, while the other tells me to add it. Both sources tell me that the food offenders in their plan cause inflammation, which we think is one of the main reasons for our pain. Perhaps it’s the gluten. But an article in Pub Med that I read reported that Sjogren’s patients do not have a positive response to their conditions by eating gluten-free. So which is it? Can you understand why we are all running around in a maze hitting walls?

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So How Will We Know?

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I came across a quote by J.K. Rowling that spoke to me: ” Rock bottom became the solid foundation on which I rebuilt my life.”

So how will we know when we have arrived at rock bottom? Is it when we look at ourselves and don’t want to be us anymore? For me, the answer is yes. I look at the whiny, feel bad lump I have become and I don’t want to spend whatever years I have left like this. I am finally ready to try a strict food plan, that really & truly becomes a lifestyle for me. Part of my motivation is because I ran into a friend who had been very ill for sometime. Several months ago, she wandered into a holistic, supplement type store when visiting her parents out of state. She happened to meet a Functional Medicine doctor who has changed her entire world. My friend lost 30 lbs. and is now off of all medicines except for one. She follows the Paleo Autoimmune Protocol by Sarah Ballantyne and took supplements. And yes..I want her pain-free status.

For those of you who have followed my blog for awhile, you know that I have an addiction to chocolate and probably sugar in general. To follow this strict Autoimmune protocol, I must give up sugar and several other offenders, something I have sworn  many times throughout my life, that I did not think that I would or even could give it up. But I am ready. I need a better quality of life than this and I am ready to go all in with a different approach. Healing myself from the inside out. Hmm. What a concept.

I completed my first Alternative Medicine Doc consult by phone yesterday afternoon. I loved that it was only $50.00, because this doctor has a real commitment to HELP patients, she keeps her rates very low. I did buy a lot of supplements..but at far less costs than what I pay for my medical appointments, prescriptions and over the counter products. My first phase will last for 100 days. It is strict, but I am ready. And best of all is that I have the first doctor that I have ever had..who said to me, ” I will address every symptom that you have and help you to get off all of your medications”. Yes, that’s a first. It looks like I have added the last doctor to SjoDry’s “Dream Team”.

Here’s to Healing!

SjoDry and Hopeful

 

 

 

Posted in Food & Diet, Random, Searching for Answers, Support, Symptoms | Tagged , , , | 6 Comments

Another Day, Another Diagnosis

I have often said that Sjogren’s Syndrome is the gift that keeps on giving. I don’t know about you, but I’ve noticed that I have fallen into this..“because of Sjogren’s” rationale for everything physical or medical that happens to me.

Either wrongly or rightly, I have found that Sjogren’s gets the blame. Of course I have another significant diagnosis of CVID (Common Variable Immune Deficiency) that has been with me far longer than Sjogren’s has. As I grew up, it never occurred to me to research any of my medical issues.

I just dealt with them (or more accurately..my Mom dealt and paid for them). Being ill has been my normal for my whole life. I suppose that’s why I have a sense of humor about my never-ending, “kill me now”, “she’s always sick” saga.

Like I Need Another Problem (Said With Snarling Irritation)

So here it is folks..Obstructive Sleep Apnea. I know, I just wrote about this a blog post or two ago. It’s just been confirmed at this point. When the doc suggested a home sleep test, I was thrilled. This is easy. Do the test in the comfort of my home & mail the (already postage paid) unit back when done. And for the most part it was easy.

Of course my autonomic dysfunction (Thanks to Sjogren’s) kicked in like a woman in the throes of a menopause whole body sweatfest and drenched my gown. But because of this piece of pie, easy home test, I could not change my pj’s & disrupt the test. It felt like I was wearing a wet, soggy full-body diaper.

I suppose that it never occurred to me that the doc would order the real ‘in lab’ sleep test with all of the bells & whistles. I am lead to believe by those who have already experienced it, that I can count on a night of little sleep and lots of interruptions. For me, that means same night, different location.

 

Oh, The Choices You’ll See

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I am back to research drawing board. This time I am trying to learn about CPAP & BiPAP masks. Because of my Sjogren’s affliction, I am particularly concerned about my choice in machines and masks. I have spoken to a few Sjoggies who mentioned that a CPAP (meaning continuous air) dries a non-Sjoggie out quickly. Oh my. Can you imagine what that will do to an already dried out throat & nose?! One person said that she had a problem with the seal causing air to blow into her eyes & quickly dried her eyes out.

Time For A Sjoggie Shout-Out

For those of you who have already lived this fun, please share. Have you found a mask that works especially well for you? I have to admit that with my fatigue and level of sheer exhaustion, I have high hopes for this mask & machine.

Let’s see if we are trying to determine the absolute best mask in our Sjoggie world, what would it look and function like? Of course it needs to be easily removable to accommodate all of our trips to the restroom, as well as our bedside table hydration needs. Must not dry us out worse than we already are (I’m already laughing on the floor). Must not add any pain to our Sjogren’s ravaged bodies. Must not add any peculiar sensations to those of us with neuropathies. Must be easy to adapt to, so as not to interrupt our already sleepless nights. Must allow for those of us who rock n’ roll every  night, full freedom of movement. Hmm. Have I left anything out?

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Now normally, I am immediately drawn to the girly pink color mask & the like (sucker for gender marketing), but for this choice..I am looking at form & function before cute.

I know I can count on my Sjoggie-Mates to help me out here. You know that when I mention Show-Grins to a CPAP/BiPAP supplier, I am going to receive the same blank stare we get from various health providers..right?!  So come on now..help me out. Brands, styles, helpful tidbits…all personal Sjoggie input is welcome here.

There Is One Silver Lining

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There is one silver lining here..because of Sjogren’s, I have made some wonderful Sjoggie friends and connections. That is the best gift of all.

Looking forward to hearing from you.

SjoDry and Searching

Posted in Random, Searching for Answers | Tagged , , , | 4 Comments

Is This A FLARE ~ FLAIR?

Okay,  it’s time for a spelling reminder. I am a regular visitor to the Sjogren’s World Forum & other forums related to my medical conditions. It seems like at least once a week I see this headline..Is This A Flare/Flair?

I used to be a wonderful speller and would have never needed to remind myself of how to spell a word..or needed to look up which word with the same sound but a different spelling, meant which concept. But sadly, I did just that this week.

I will start by refreshing your memory (if it works like mine).. Flare = Burn with sudden intensity, while Flair = A natural aptitude or ability. So there we have it..when referring to our sudden Sjogren’s body uproar manifesting in our joints, or whatever body part it has decided to attack., we use the F-L-A-R-E spelling/meaning. So while it would appear that SjoDry has a “flair” for chronic illness, it is actually just a severe immune deficiency which caused autoimmune conditions with periodic flares of increased activity. Simple right?!

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Does Anyone Really Know?

Not only do I question my spelling of it, I have decided that I don’t think I even know what a flare is as it relates to my own Sjogren’s Syndrome. And I am not sure that many Sjoggies know either, since they continue to ask the question. The issue is that Sjogren’s manifests itself in everyone differently and to varying degrees. In my experience, the disease presents every day, like a bad roller coaster ride that never ends.

My day-to-day symptomology is all over the place. Some symptoms (like eye irritation, nose dryness or desert mouth) have variability in me, while other symptoms like FATIGUE and PAIN just seem to move in one singular direction. Down ~ as in, to the the floor or bed as a result of my fatigue. And UP ~ as in pain intensity.

Perhaps there are Sjoggies out there who recognize a pattern of Sjogren’s functioning in their lives and can identify this phenomena we call a “flare.” In fact, some may even be able to pinpoint a trigger to these flares. And then there’s me. I just seem to stay in this fairly constant window of crappy functioning that never goes away. Think ‘treading water’ while in lava.

The MED-EVIL Conditions Have Joined Forces

Get out of flare free card

Of course I must consider the fact that my functioning may be totally different than others who do not share my co-morbid medical conditions. For instance, my immune deficiency and my autoimmune issues both cause some of the same symptoms. I suppose it is possible that my symptomology could be more intense than someone who does not have multiple diseases with similar symptoms.

And even while I do share some of the exact same conditions as a couple of the Sjoggies on the Sjogren’s World Forum, we are still not affected to the same degree with our symptoms, or level of functioning, or lack thereof in my current state.

All Flares Are Not Created Equally..

Or are they? The reality is who knows. Of course they are subjective. Pain and symptomology are in the eyes of the unfortunate beholder. To the individuals who experience them, they don’t get any more real. And none of us would wish our chronic illness or the flares that go with them, on anyone.

For me, I don’t see distinct periods of symptom intensity as a flare, as much as I see it as just a part of the hills I climb on my daily roller coaster ride. I can’t put my finger on a starting and stopping point of pain or symptom intensity, which it seems like a flare should have. Even with the dips and valleys of my daily ride, there is no significant deceleration or lessening of my symptoms and all of their effects. So I guess that it depends upon your definition of a “flare” and what that looks like in your Sjoggie world.

The Ride That Never Ends

Sjogrens Syndrome roller coaster

I suppose that just like the scenery on a roller coaster ride, my chronic illness is one big blur. Occasionally, I see parts and pieces of the old me, with dashes of brightness and darkness. I never know whether a storm is coming, a machine malfunction or what’s around the next curve. But good, bad or ugly, I am on the ride of my life.

I’m ready to get off of this ride, how about you?

SjoDry

 

Posted in Random, Searching for Answers, Symptoms | Tagged , , , , | 4 Comments