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?

lady with question mark

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

time-clock

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?

update-clipart-update-clipart-7caKnz8ni

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?

kit-kat

 

Remember that cute commercial about, What would you do for a Kit-Kat 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!

Home-Run-Real-Estate-Investing1-300x293

SjoDry and mending…

 

 

 

 

 

Posted in Uncategorized | 1 Comment

Rock Bottom..Are We There Yet?

Reality Slap

Screen-Shot-2016-03-04-at-4.24.53-PM

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?

Leverage_Season4_keyart

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

stock-vector-hamster-wheel-142260142

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?

larger purple maze

So How Will We Know?

rockbottom

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

Collage-Masks-1024x576

 

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?

category-womens-cpap-masks

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

everycloudcoverphoto

 

 

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?!

computerflare

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

Blessings

Reflection

Praying Hands

There is a good reason (or a handful of them) why people say that religion and politics are topics to avoid in every day conversation. I think it’s a good rule of thumb to live by when few topics can ignite such heated exchanges in the way that politics and religion do. If you don’t believe me, just turn on the tv and listen to the day’s presidential candidates’s war of words.

So at the risk of upsetting someone, I am treading on a potentially volatile topic today. Like millions of other people, we just celebrated the holiday of Easter. Easter represents a foundational belief in the Christian Faith. That belief, is that through death, burial and resurrection, Jesus paid the penalty for sin, thus purchasing for all who believe in Him, eternal life in Christ Jesus.

To Each His Own

American and Marine Flags

Regardless of what you believe in your faith or which faith that may be, in America, you have the freedom to make that individual choice. I think that sometimes we often forget how critically important that fact is. Between the Easter Egg Hunts and Church services, did you happen to hear that there was an explosion in Lahore, Pakistan on Easter Sunday?

That explosion was 7 miles from where our son, an active duty Marine is stationed. As he and his fellow Marines stand ready behind the large walls of the U.S. Consulate in Lahore, I am painfully reminded of all of our service people’s daily sacrifices for all of our safety.

Ironically, while we were in our churches giving thanks, hundreds of people were bombed celebrating their Christian faith in Pakistan. I get that there is evil in the world. But it is almost beyond my comprehension to understand how this evil and hatred can lead others to kill people for their beliefs. As we enjoyed our families, our food and fellowship, scores of mothers, fathers and children were irrevocably changed in Pakistan…just because of a celebration of their Christian faith. Is is so sad and senseless. This barbaric act will continue to happen unfortunately. For the most part, it is easy for us to remain distanced and not spend a lot of time thinking about it..until it happens to (or close to) your family.

The Irony

Isn’t it ironic that these jihadists have chosen to kill themselves (and many others) in the name of their faith & for their allah..simply because of Christians and their personal Christian faith. I am thankful that I can worship in any way or faith that I choose to. I am thankful that the God I worship doesn’t want me to go prove my faith by killing others who do not share my beliefs.

SJ-Faithclosepins

The Freedom To Search For Answers

While this is not my typical Sjogren’s blog post, I hope it will serve as a reminder of the freedoms that we still enjoy. It is very easy and pretty much unavoidable for we Sjoggies to get caught up in our day-to-day functioning and our search for medical answers. It consumes a great deal of our life whether we like it or not. We’re tired and we don’t feel well…but we are alive. And we have the freedom to see doctors and seek treatments. And yes, Sjogren’s has altered my life in negative ways that may remain permanent, but it cannot ever shake my faith! Typically, I would not write about this topic, but I just found myself reflecting not only on my son’s safety, but our world’s safety and freedoms.I will apologize if I have offended anyone in writing about this particular topic.  But I am thankful that it is my freedom to do so.

SjoDry and Thankful

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

Just Breathe Normally..

Hmmm.

A few years back, my husband was urged to have a Sleep Study. The physician wanted to see if my husband might have Sleep Apnea. What is Sleep Apnea I asked? According to the NIH, Sleep Apnea is defined as:

Sleep apnea (AP-ne-ah) is a common disorder in which you have one or more pauses in breathing or shallow breaths while you sleep. Breathing pauses can last from a few seconds to minutes. They may occur 30 times or more an hour. Typically, normal breathing then starts again, sometimes with a loud snort or choking sound. Sleep Apnea usually a chronic (ongoing) condition that disrupts your sleep. When your breathing pauses or becomes shallow, you’ll often move out of sleep and into light sleep. As a result, the quality of your sleep is poor, which makes you tired during the day. Sleep Apnea is a leading cause of excessive daytime sleepiness.

I don’t know, is it just me? It seems like everyone I talk to these days has this diagnosis or is about to. Of course with my husband’s Afib heart condition, I was in full agreement that he should follow through. He did so & was diagnosed with Obstructive Sleep Apnea. He was fitted for a CPAP mask, that Bless His Heart…looked like a cross between Snufflelupagus and Hannibal Lecter from Silence of the Lambs.

Snufflelupagus     Hannibal b & w

It was quite a large production to fill the water into the machine and then put the entire contraption on. If we didn’t get our goodnight kiss in before the routine, well..we missed our chance. And by the way, we need to have all talking completed before the mask is put on, as he is unable to speak or hear once he’s strapped into his mask. Clearly, this is not a process that anyone wants to repeat more than once a night..and for many, not even then. And if you have a bladder matter that requires frequent trips to the potty..it could still be a long night.

Did It Work?

Well, the answer is..I think it works..if one can tolerate the mask. By design, the mask is so tight with pressure, that no air could possibly escape or sneak in (unless intended to.) I could see an improvement in my husband’s sleep, but admittedly feel sorry for him in having to wear this funny-looking contraption each night. I feel even worse for him each time that he removes the mask to reveal a pale, colorless suction-cup shaped, impression around his mouth. It reminds me of when our daughter was young (and like all kids) went through a period of licking her mouth until she developed what I call “clown mouth”.

To be honest, I have thought to myself and even whispered to a few friends, I feel sorry for him…I KNOW I could never wear a mask like that. And to be clear..what Sjoggie could? We are already dry enough without assisting ourselves into choking mode, right!

Sjodry-sleep-study

On several occasions, my husband has pointed out to me that he is sure that I likely have Sleep Apnea because of the way I wake up with sudden loud gasps for breath. And with my ridiculous fatigue level, he could be right. In fact, at my Pulmonologist appointment last week, my doc suggested that I have a sleep study. I explained to him, that while I think it is a good bet that SjoDry does indeed have Sleep Apnea..I have avoided pursuing it, because I don’t need any assistance in worsening my dry mouth at night, and that is my biggest concern.

Here’s the rub..if I am going to go in to see my doctor and complain about my lava-resembling fatigue, then I can’t poo poo the suggestion to have a sleep study to see if this could be a contributing factor to my lack of sleep each night, and my all-encompassing fatigue each day. What is it that they say? You can’t have it both ways. So my appt. with the “sleep doctor” is on the calendar.

Even my Mom is going through the same process and in search of the perfect, or should I say, tolerable CPAP or Bi-PAP mask. While part of me feels like Sleep Apnea is the new “designer” disease created for the purpose of selling expensive face masks, the researcher part of me..says that the medical explanations, diagrams, videos and possible serious consequences of ignoring Sleep Apnea, do make sense. In fact, I had never really thought about Sleep Apnea as a very serious problem (at least in comparison to the rest of my medical issues.)

The Good News

The good news is that I have been researching the huge variety of face masks available. Of course, one’s individual Sleep Study results vary in terms of which mask may be most appropriate for them, but there are what appear to be tolerable masks with warm humidifiers in the same unit. Many Sjoggies, myself included, require the use of a humidifier each night anyway.

After asking the question about Sleep Apnea masks on the Sjogren’s World Forum, and talking to other Sjoggies I know, I am feeling less anxious about my possible/probable need for one.

The Bad News

The bad news is that they say that when you have been married a long time, you start to look alike. But matching CPAP masks is not what I envisioned.

his and hers

Here’s to fresh oxygen..All Night Long!

cpap_user_2_inch_round_magnet-r02e138b77515410fae6f53576038c95f_x7js9_8byvr_324

 

 

 

 

May the Oxygen be with us!

SjoDry

 

 

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