Medically Speaking..

Hopeful Again!

hopeful

Greetings Sjoggie-Mates. It has indeed been a long time since my last post. That is probably because my head has been occupying a different mental space. It is still attached to my body, but is not being allowed to control my illness. That is, I am sick of being sick and the ever frustrating doctor-patient interactions that have plagued my life for so long.

We are all in search of meaningful answers for our better health. Some of the solutions that we try may be helpful, but are typically lacking on many levels. With the small amount of real success in battling our conditions, it is no wonder that we find ourselves down in the dumps. But I am singing a new tune that I just have to share with you. I am excited about it and I want you to be equally as excited.

The Starting Point..

Or should I say the languishing point? As with many of you, we live with a tremendous amount of pain from our autoimmune issues..fibromyalgia; chronic pain syndrome, etc. Who knows what causes this chronic pain or more importantly..how to get rid of it. The first line of attack  typically thrown at me, were opioids. Pain meds seemed to be the only relief I could get and as such, lived on them for years (a Fentanyl patch & pain pills for breakthrough pain). I didn’t want to be taking pain meds, but I also needed to function in a job full-time. Between the overwhelming fatigue and chronic pain, it seemed like my only option. Until now.

Low Dose Naltrexone

A_Vojdani_ppt

Worth your time to research

Some of you may be familiar with a drug called Naltrexone (pronounced Nal-Trex-Own). Naltrexone is a drug that has been used since the 80’s for primarily dealing with drug users who overdose. The drug was approved through the FDA in the 1980’s and is typically administered at 50mg or above for the intent of stopping the effects of drugs or alcohol. What was discovered however, is that the drug, when given at very low doses, is very effective for a multitude of various illnesses (autoimmune illness being at the top of the list). In order to start this medication, I had to be off of all opiates. I was willing to go through the withdrawal from the pain meds to try it. Based on all of my research, I knew that the LDN would help me on at least one level or more, and I was right!!

Who Is That Woman?

happydance C

Doing the LDN Happy Dance!!

 

With any new medication, one should research any/all potential side effects. At a maximum dosage of 4.5 mg for low dose Naltrexone, the only possible side effect was possible vivid dreaming (which I would welcome, but it has not happened). What has happened since starting the drug 3 weeks ago? I have more energy than I have had in ages. I am sleeping very soundly. Let’s just say that my GI function has vastly improved and my pain is also much improved (not absent), but better. I have read that the drug can take awhile to help much like many of us faced with Plaquenil. I am titrating down on my prednisone & will be off of it soon. My goal is also to lose the Plaquenil (there’s just something I don’t love about losing large clumps of hair in the shower every morning). I was shocked when I read the research about the amazing success stories of people treated with LDN for a large variety of conditions, including cancer. Yes, cancer. Please read the expert interview of Dr. Burt Berkson on his experience with treating multiple cases of terminal cancer patients and autoimmune conditions: https://www.ldnscience.org/resources/interviews/interview-burton-berkson

Another wonderful resource for LDN is: www.LDNresearchtrust.org

 

LDN Even Helps Animals!

Yeti2

Yeti

During my research about LDN, my mother called me one night, upset about her cat, Yeti. Yeti has a history of pancreatitis and my mom had been told that he had a tumor in his pancreas. Yeti was waxing and waning and the vet had even said that my mom might need to considering putting the cat down. I happened to be on  my Ipad when she called me, so I googled whether LDN is being used with animals? And the answer is yes! With my continued research I found a vet in NJ who is doing a lot of work with LDN and pets. She explained that some of the pets she tried the LDN with, it had not worked for. But for most pets, it had helped a lot and she also had a handful of miraculous pet stories where the LDN had actually made tumors disappear or stop growing in some animals. It was worth a shot. I called every Holistic Vet in Port Richey, Florida (where my mom lives) and the surrounding areas to see if any vet was using the LDN for pets that they treat? They were not. I contacted every compounding pharmacy in the same areas to see if they had any vets prescribing LDN for animals? They did not. And finally, I wrote a letter to my mom’s vet urging him (as a last resort) to please try the LDN. He agreed. The cat has been on his LDN about as long as I have (3 weeks). My mom reports that the cat is now eating, playing and moving around more than he had previously been doing before the LDN.

What Have You Got To Lose?

ldn-book

The LDN Book

This was an easy answer for me (and probably for most of us Sjoggies)…What’s to lose..pain, fatigue, depression, poor functioning…yada yada yada. But with such low risk and no interaction with other drugs, the biggest hurdle is finding a physician that will be agreeable to let you try it. I was able to work with my doctor to start the LDN. But because this treatment is not yet mainstream, you may have a doc who is likely to balk at the request. Fear not, there is a section on the LDN site for you to find an LDN doc in your area: https://www.ldnscience.org/patients/find-a-doctor   

The tele-docs tend to be more expensive and are likely not covered by insurance (just my guess). But if you can find a physician that will work with your insurance, that is best. Now for the actual med. Because LDN is typically prescribed at 50mg or more, your pharmacy is unlikely to carry low dosage amounts of LDN (such as 4.5 mg and below). This makes a compounding pharmacy necessary (my insurance does not cover this..but for most prescriptions, the cost is between $30.00 – $50.00). OR…as my internist friend does (she both prescribes & takes LDN), she gets the 50 mg pills & dilutes them with distilled water. She takes 4.5 LDN liquid each night. The cost of the medication when diluted, cost about a penny a day vs. approx. $1.00 a day when compounded. My doc wouldn’t go for the diluted route..no worries, I’ll take it anyway I can get it! And folks, I will never be without this drug. By the way, my internist friend also feels very strongly that this low dose naltrexone could be a huge factor in helping to alleviate the opiate crisis in our country. Some doctors are suggesting that many people have an endorphin deficit which could lead to self-medicating and addiction. By treating people with LDN, it may provide the necessary endorphins to make everyone feel great. It has definitely picked up my mood!

LDN research trust

Please RESEARCH This Drug!

Everyone must travel his or her own journey in dealing with their autoimmune illness(es). I would never presume to tell anyone how or what they should do to treat their symptoms. But I will strongly encourage you to take the time to research this medication. It appears to be the most benign drug I have ever been on and has the most potential to help me in many ways and is already doing that. I truly hope that this information will help you.

Here’s to your research!

Take Care.

SjoDry

 

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Posted in And the research says..., Random, Symptoms | Tagged | 1 Comment

You’re Getting Sleepy(er)

Another Sjogren’s Treatment?

Question mark c

Happy spring Sjoggie-mates. While the seasons change, our poor state of chronic health issues pretty much stay the same (or so it often seems). Just like you, I am always in ‘search for Sjogren’s cure’ mode. And also just like you, I’ve tried many of the treatments we hear about. 

Whether it is a new diet, medication, acupuncture, massage, etc., so far I have not happened onto the magic bullet that launches me into any kind of state that resembles recovery or remission. But it does not stop me from searching.

Self-Help

The words self-help pretty much personify who we are as advocates for our own health, especially with the illness of Sjogren’s Syndrome. However, the self-help I am referring to are the efforts that we can personally implement to help our own condition. We have heard or even read some of the self-help books that are out there that give us guidance on how to be the best we can be; find the perfect diet; mend relationships and the like, but do these types of efforts work when we are looking for a physical solution to our chronic illness conditions?

The answer is yes, they can. Specifically, I have been focused and researching for awhile now, how our state of mind can affect our health either in the negative or in the positive. I have become convinced that the strong message of “We are what we create or think we are“, is very accurate. If we are hyper-focused on how bad we feel and have an attitude that we will never get better, then we can be sure that; that will be our outcome. 

What About Hypnosis?

Self hypnosis C

 

I have started researching meditation and hypnosis. I found that there were 13 studies (and probably more) which looked at hypnotherapy for chronic pain and whether it worked? The chronic pain that patients presented with came from various organ/body systems. It was shown that hypnosis interventions consistently produce significant decreases in pain associated with a variety of chronic pain problems.

So what is hypnosis? Many of us probably immediately think of a hypnotist on stage who asks a group from an audience to come up on some type of stage, be hypnotized and then asked to do silly things which make the audience laugh. But there is a real, therapeutic side to hypnosis and it’s ability to heal/help people. 

The official definition of hypnosis is that it is a natural state of selected focused attention and reduced peripheral awareness & enhanced capacity to respond to suggestion. During hypnosis, a person is said to have heightened focus & concentration.

black and white swirly pic

 

The Great News

Just like all of you, it seems that every Sjogren’s intervention/treatment out there has a $$ price tag attached to it. We get tired of shelling out money for treatments that don’t help, don’t we?! Guess what? You can try hypnosis for FREE. Now this is one thing about the internet that we can appreciate! For the brief few moments it takes to do a search on YouTube.com, you will be presented with several hypnosis videos to try in the comfort of your home for free. I don’t know about you, but I love this!

Already, I have found hypnosis for chronic pain; depression; being more positive; losing weight; sleeping better, etc. Each night about an hour or so before I go to bed, I plan to listen to my hypnosis video of choice. I used to be so hyper that I did not think that there was any way I could possibly be hypnotized by anyone. Sjogren’s fatigue has changed that. Afterall, most of function in a semi-coma state most of the time, so we’re almost there already.

hypnosis in the brain

 

Does It Work?

I don’t know yet. I have only done it for 2 or 3 nights at this point. What I do know is that these hypnosis videos are very relaxing. I have my eye mask that I put on (you may remember my mask from my Rome trip blog post…the one that looks like a black bra from Victoria’s Secret). I turn out my bedroom light and proceed to focus on my breathing and  the hypnotic suggestions. I figure..what have I got to lose? (Hopefully a few pounds and some chronic pain at the very least). And friends…again…it’s FREE…we love free!! More importantly, there is study data supporting the use of hypnosis for many conditions.

It Never Hurts To Try

 

swinging pocketwatch

The way that I look at it and most things..is that it does not hurt to try and it may really help. I think I am pretty safe in saying that consistency will be the key here. There is no doubt in my mind that it will be necessary to maintain the hypnosis practice on a regular basis to see and maintain benefit. I’m okay with that. I think that we can try the free Youtube options available to us and if it begins to help, we can always go to a bonafide hypnotist in our local area who can personalize the hypnosis to our individual needs. Did I mention it is FREE!!

My fellow Sjoggie-mates, I am greatly encouraged that there are so many studies being done about Sjogren’s, big pharma is starting to figure out we Sjoggies are a goldmine opportunity. These things, however will take awhile to come to fruition. So in the interest of Sjoggie self-help, we have nothing to lose. If you decide to join SjoDry in any hypnosis efforts, please reach out and share your experiences with me/us. I would love to know what is working for you. If you identify a particularly helpful hypnotist online/youtube (I like Michael Sealey so far), please share.

Until next time…

I’m Getting Sleepy…

 

 

Posted in And the research says..., Searching for Answers | Tagged | 2 Comments

What About The Opiate NON-ABUSERS?

Some Of Us Don’t Abuse Opiates!

This is a topic that really bothers me, mainly because I fall into the group of non-abusing opiate users. I recently came across a very well written article by a Pharmacist, Jason Poquette. Jason in the author of The Honest Apothecary. I think Jason did a great job of nailing this issue and am thankful that someone is verbalizing it, even if not many folks are listening.

pills and pill bottle

 

Opioid Nonabusers: An Inconvenient Truth

APRIL 11, 2016

It seems as though every state in the country is passing laws intended to address our opioid addiction and overdose problem.

Make no mistake about it: this is a big problem. The American Society of Addiction Medicine has reported that drug overdose is “the leading cause of accidental death in the United States, with 47,055 lethal drug overdoses in 2014. Opioid addiction is driving this epidemic, with 18,893 overdose deaths related to prescription pain relievers.”

Leaders in health care, government, and law enforcement are all scrambling to find ways to slow down the flow of opioids from both legal and illegal sources.

For instance:

  • Recently passed federal legislation appropriated more funding to addiction treatment and education.
  • New York moved to an all electronic prescribing system in part to make prescription diversion more difficult.
  • Massachusetts passed laws limiting initial opioid prescriptions to 7 days and making addiction counseling in emergency rooms a requirement in certain circumstances.
  • Ohio passed laws mandating the use of its state prescription monitoring program for opioid prescriptions involving doses that exceed 7 days.

To be clear, I support all efforts to prevent drug addiction, educate patients and prescribers, and offer more treatment options to those who wish to break the horrible cycle of addiction and abuse. But in the midst of all the discussion on how to reduce opioid prescribing and abuse, there seems to be awkward silence when it comes to the largest group of opioid users: nonabusers.

Nonabusers comprise the largest group of opioid users in our nation by far. These are the patients who are legally receiving opioids like oxycodone, hydrocodone, and morphine and are taking them as prescribed for pain.

The typical nonabuser saw a single prescriber for his or her opioid. They take their medication on schedule, or less frequently than allowed. When nonabusers use opioids for acute or postsurgical pain, they’re doing so to enable greater mobility and physical therapy, permitting a faster recovery and return to a better quality of life. When they stop taking these medications, they rarely ever need them again.

This describes the majority of opioid users.

For instance, around 207 million prescriptions were written for opioids in 2013, according to IMS Health data. That same year, there were about 14,000 deaths from opioid-related overdoses, according to the National Institutes of Health.

You could do all sorts of things with those statistics, but it’s simply a mathematical reality that for every 14,785 opioid prescriptions written, 1 individual died by abusing the medication. Of course, this sort of analysis isn’t very helpful, as it doesn’t take into consideration the number of opioids involved in deaths that came from nonprescription sources such as robberies or illegal importation.

Suffice it to say that more than 99% of prescriptions for opioids are written for nonabusers. Should all of those prescriptions have been written? Probably not, but that doesn’t change the fact that most of those patients aren’t abusing opioids.

It looks like we’re too afraid to speak up on behalf of the nonabusers. We’re too busy trying to assign blame to drug manufacturers, prescribers, and pharmacists. Meanwhile, very few individuals are speaking out about how opioids actually provide life-restoring pain relief to millions of patients.

If we said that most patients use opioids without becoming addicted, it would appear as though we’re blaming the addicted patient for the problem, which isn’t politically correct. I’m not blaming the addicted patient, either. What I’m saying is that statistically speaking, they comprise the vast minority of patients who use opioids. We’re writing laws and imposing rules to help manage the 1%, but in this case, I’m okay with that.

It almost seems as though opioid nonabusers are an inconvenient truth. The millions of patients who take their medications appropriately with stable dosing and have visited the same prescrber and pharmacy for years are almost supposed to be ignored. You can pretend that they don’t exist, but they’re the elephant in the room.

Still, the 14,000 deaths related to opioid overdose is 14,000 too many. I believe that our society should employ resources to help prevent addiction wherever possible and aid addicted patients in their recovery.

But I also believe that the vast majority of patients are taking opioids responsibly and that the majority of health care providers prescribe these drugs cautiously and carefully. Addicted patients need our help, but nonabusers need it, too, and health care professionals and politicians should stand up for them, as well.

Nonabusers often bear stigma and are sometimes made to feel like outcasts when they’ve done nothing wrong. I don’t think that’s fair, and I’m willing to speak up on their behalf.

elephant S

I am the elephant in the room.

SjoDry and Frustrated

Posted in Patient Pet Peeves, Random, Support, Uncategorized | Tagged | 2 Comments

Ask Your Doctor If ____Is Right For You

Ever Heard That Before?

iStock_Rx_Drugs

 

At the end of a long exhausting day, I appreciate the opportunity to sit down and “chill” as my kids say. As empty nesters, my husband & I have fallen into a routine of eating our dinner on our TV trays in front of the news and other programming. Now I won’t apologize for enjoying my TV time because I have earned and need it. But I will tell you that I am enjoying “regular” TV less and less because I see more pharmacy ads and less of my favorite TV shows. Is it just me? It feels like the majority of commercials that I see are touting a new medication.

Thankfully, our kids gave us a fancy Amazon Fire TV box for Christmas. Admittedly, it is cool and we are still trying to figure it out. We have lots of choices for movies and TV series that frankly, we never knew existed. It has turned out to be the gift that we did not realize that we needed. There is one striking realization that has occurred to us since utilizing this gadget. We have confirmed what we always suspected before, the length of TV shows are very short and commercials occupy the majority of programming time.

It seems that any time I turn on TV no matter what time of day or night, I never land on a TV show in progress. And mostly I just see commercials, the majority of which are mostly medication commercials.

About The Meds…

handful of pills

Let’s See if any of these ring a bell. Allow me to create a vision for you:

Does That Ring A Bell

It was a warm spring night. We arrived at what would prove to be an Eliquis night of fun. The event was both a fundraiser and party to Celebrex a good cause. As we approached the gala, I could smell the fragrant Hyacinths and Humira. We could hear the sounds of old familiar Lyrica being played by the band. They offered dancing and Yaz, even a California Shag for those who could Abilify with ease. Of course after having a drink or two of Xeljanz, I can never resist dancing to certain songs. If I over-do however, I can always count on a sore Latuda the next day. Somehow I always manage to hang on until the last song the band plays. Let’s face it, dressing up on occasion and attending such a function has a great Effexor on all of us. And just because I dress up in my fancy attire does not make me an Opdivo. In fact, the Rexulti is just the opposite. I often leave these functions knowing that my participation has helped a good cause, and that’s a feeling that will Neulasta. But a word of caution, on occasion the excessive partying toasts and celebration of a job well-done can lead to a serious case of Tamiflu the next day.

Funny dancing pic

My Point?

guy asking doctor a question

Where do these drug companies come up with these medication titles? If I am being honest, I am more entertained by the names than the content of the commercials..at least until all of the warnings about the medication start. These commercials are typically emotion-heavy and light on facts. Also, the images frequently confuse me on many of the commercials. My husband & I are still trying to figure out why the heck the two people are sitting side-by-side in matching bath tubs. What is interesting to me is that pharmaceutical ad spend is somewhere in the 4.5 billion dollar range. I am not sure who these commercials are benefiting? Perhaps the corporate lawyers have told their pharmaceutical employers that due to potential liability, they must put these commercial warnings on TV, I am sure that I don’t know.

Have You Listened To These Warnings?

Side Effects CartoonR

 

In reality these medication warnings are scary, particularly if you or someone you know experiences them. But to listen to them being presented in rapid gunfire succession almost makes you wonder if you’re being punked..like who would want to try some of these drugs?

  • May cause depression or If your depression worsens
  • If you experience changes in behavior or have thoughts of suicide..really? Yikes!
  • If you have a high fever; stiff muscles & confusion; uncontrollable muscle movements; chest pain; digestive problems; painful swallowing or joint pain..

Geez, I have to ask myself if maybe the side effects are worse than my original medical issue(s). Or maybe that is the point! These companies are doing us a favor by pointing out that we may potentially have it a lot worse..just look at all of these possible side effects we COULD have if we take their drug.

And of course..the ultimate warning: Taking __________may have an increased risk of stroke or DEATH. Holy Smokes…these kinds of warning just make me want to live with the problem. It kind of sounds like a crap-shoot anyway, might as well err on the side of caution and L-I-V-E!

Anyway, for all of my Sjoggie-Mates and chronically ill friends out there, we already have most of those symptoms anyway..so we are not looking to increase or exacerbate them.

little mouse

And Guess What?

These commercials tell us to go ask our physicians if __________medication is appropriate for us? Again, this is a critical miss for the people who have created these commercials. Because this would assume that our physicians give us enough time to ask questions, which many do not. Patients who are able to ask this kind of question of their physician just annoy the physician. I get it. They have had multiple patients coming in daily asking if the medication that they saw on TV last night would be a good one to try.

Let’s face it..professional/chronically ill patients (defined as patients who have learned how to advocate for themselves and do not experience intimidation from doctors or others for standing up for themselves) know better than to squander their tiny window of appointment time by asking silly TV commercial meds questions.

So what’s a person to do? Avoid these drugs at all costs or live dangerously and take a chance? Or probably the same thing that most of do anyway (or should do) research any medication before starting to take it. And meanwhile, try to enjoy the fierce pharma barrage of commercials with the humor that they have earned.

What's The AnswerR

In addition to your own sources of medication research, I will add that I have a site that I like to visit to check out medications. The site is: AskAPatient.com. This site includes medications from A ~ Z and random people’s responses to them (good, bad or the jury is still out). Individuals complete a form about the medication they took or are currently taking and then indicate whether the medication has been helpful or otherwise. Some would argue that this type of information is completely anectdotal, but I find it helpful, particularly for newer medications which have not been in the market very long.

Until Next Time…

When in doubt do your research

SjoDry and Smiling

Posted in HUMOR, Random, Uncategorized | Leave a comment

The Sjogren’s Journey

 The Road We Take

Greetings Sjoggie-Mates, long time..no post. I generally post only when I feel that I have something to say or can contribute in some way to our health (even if it’s only a laugh). Lately, however, I have not had a lot to say, nor have I had a lot of energy to say it.

I will share that the fatigue monster continues to inhabit my body without invitation. While I am as tired of this never-ending chronic illness journey as you are, I am trying to be more mindful of my attitude and mind-set.

I have been doing a great deal of reading about how our attitude has much more to do with our health than most people realize. That is, our thoughts create our reality.

Deja-Vu

Do you find yourself ever waking up (every day) already thinking: About the terrible day you have ahead; this or that hurts; you slept terribly..so your day will be awful, your exhausted before you even start your day, etc… Unfortunately, we all live our chronic and painful realities 24/7 and it can be difficult to not fall into this negative thinking.

Smart people have done lots of studies on how our thoughts really do create our realities and can greatly effect our health in a negative way. So what would happen if you decided to declare that you are going to have an amazing day every morning when you wake up?!

It's a bad day not a bad lifeR

SjoDry’s Morning Shower

Water pouring from a shower head

Think Positive!

I have started a new routine. Thankfully, my morning shower has long been established. I am referring to the mental discussion I have with myself while in the shower. Typically, it consists of a ticker list of all of the things I need to get done that day, which obviously do not have anything to do with being positive or negative and how I will go about the business of my day. But in  my reading, I read about an idea that I have adopted. The idea is to visualize the shower water washing away all of your negativity and showering you only with positivity and light.

I say things to myself like: I will have a great day today; Let everything I think, do, or say be positive; Let me be helpful to all of the people that I interact with today; I will see only the positive of other’s contributions; I will feel very energetic and productive today; My pain will be less today..and other things along those lines. Does it work? Yes! Obviously, my SS and pain don’t leave, but this process of starting my day in a very positive way, helps me to be more productive and focus far less on how badly I feel.

Perspective

The other thing that I am doing is trying to make peace with my Sjogren’s. How does that happen you ask? Again, it is a deliberate mind-set. We have all heard someone say..”There are folks who are far worse off than we are” and it is true. But when you are the one who is totally entrenched in your own painful experience, it is not always easy to remember those others who have it worse than we are experiencing.

I have tried to change my thinking about Sjogren’s and why I have it. Is God trying to punish me? No. Just luck of the draw? Probably not. What if Sjogren’s Syndrome or any other chronic health problem came into our lives for the purpose of providing a lesson(s) to us?

What We Learn From Having Sjogren’s Syndrome

LearnR

Living the life of a Sjogren’s patient has taught me:

  • To be more compassionate to others who are suffering painful medical conditions
  • Sjogren’s and chronic illness are not who I am
  • I have learned that doctors are not the supreme professionals that I counted on to heal me
  • I have learned that Sjogren’s can bring people together with a shared bond
  • I have most definitely learned that I must advocate for myself
  • I have learned that life is not over because I have Sjogren’s
  • Sjogren’s has taught me that one of the best things I can do for myself is to help others
  • Sjogren’s has been my supreme instructor in learning to be a more patient person
  • Sjogren’s has taught me that I am a much stronger person than I gave myself credit for
  • I have discovered that I can still be productive & work, regardless of the quantity of my output

I won’t continue to list all of the daily lessons I have learned and continue to learn from Sjogren’s, but they are definitely life lessons that will forever stay with me.

Acceptance

I am fond of saying, ” It is what it is,” but with Sjogren’s, it is really the truth. I was forced to accept this Sjogren’s intruder which forced itself into my life whether I wanted it or not. I cannot change it, but Lord knows that I have tried. It just seems to me that making the best peace that I can with my Sjogren’s is a healthier approach than being angry and hyper-focused  on how bad it is. Afterall, being constantly focused on your Sjogren’s condition, can contribute to high blood pressure, anxiety, depression and other symptomology.

Eye Message

Just Add Drops

Making peace with your Sjogren’s does not mean than you stop trying to find answers that can help your quality of life and self-management of the condition. Just don’t give it the power to control your life. There are some silver linings with Sjogren’s, you just have to add more eye drops to see them.

It’s Your Life

You are the only one who can control how you deal with whatever comes your way. I refuse to let Sjogren’s rob me of anything more than it has. It may have my body, but it does not have my mind…well not all of my mind. I still control the attitude part.

Text Scale

So I say..take a look at all of the wonderful things in your life. The blessings far outweigh the negative events. Think about what positive things that Sjogren’s has done for you? And by all means..love your life no matter what!

Hug Your LifeR

SjoDry and Thinking

Posted in Random, Searching for Answers, Support, Symptoms | Tagged , | 2 Comments

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.

scanning-a-bill

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.

lady-voting

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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