The Dream Team Has Crumbled

When Docs Leave

 

dream team docs 2

 

How dare he accept a wonderful, new job offer in a different state! If you have followed this blog for awhile (hint…go back to my beginning posts)..you will know that (like many of you), I have spent a great deal of time establishing my ‘dream team’ of docs over many years.

Lord knows that I have had to deal with my share of “frogs” for lack of a better term. They say (whoever they are)..that one must experiment with various doctors until they find the right fit. But seriously, who has the extra co-pays for that. Not me and maybe not you either.

My PCP

 

bizarre rude call

 

I had a very nice female PCP for many years. She got me (which translates to..she believed me). For those of us who are chronically ill and frequent our own personal posse of PCP’s and specialists, you understand how meaningful it is to truly be believed by a physician. Yes, we know how we may present to you. Admittedly, the copius collection of non-ending symptoms can look a little “hypochondriac-ish”. But trust us (I mean really trust us), we are not hypchondriacs, nor are we cyberchondriacs.

For 10 years or more I was treated by my PCP.  Dr. Gordon. She once shared with me that I was her most involved and complex patient. And while she was very nice, I think at some point, she threw up her hands with me. As I searched and searched to discover what the answers to all of my health problems really were, it always seemed that Dr. G, while accommodating to my requests, was fairly detached and uninterested in being the captain of my ship. Along the way, Dr. G inherited a very hostile group of office workers/assistants. I wrestled with leaving her care because of these very, nasty and unhappy folks. Coincidentally, it was about this time, Dr. G announced her retirement. That was approximately 2 years ago.

 

My Immunologist

 

Finally A Diagnosis!

 

I am extremely fortunate in having a wonderful Immunologist. Having been a very sickly, ill child since a young age, I never understood why I was sick all of the time. I had frequent respiratory infections; bronchitis, pneumonia & finally Bronchiectasis which resulted in the removal of the lower 2/3 of my right lung at age 14. I continued to be sick & require an antibiotic(s) about every 1-2 months for my respiratory events. At 52 years old (2012), I had a brainstorm & decided that maybe I should see an Immunologist to try to sort out my “issues”. Dr. Deangelo was an answer to prayer. As it turns out, Dr. D is a doc who has/does lots of research and was very interested in helping me to find answers and more importantly, an effective treatment. I continue to see him (and he is the only original member of SjoDry’s original  doc dream team.

 

My Neurologist

doctor mug

Do you ever just click with someone? I did with my Neurologist, Dr. Galen Mitchell. Dr. Mitchell is a doctor who always commanded a several month wait to get in..because everyone loves him. He was the most personable and thorough Neurologist I ever had the pleasure of seeing. Dr. M understood Sjogren’s Syndrome in a way that most Neurologists don’t. He ordered many tests and was the first to identify various neurological issues I have. I was understandably upset when Dr. Mitchell became ill and had to take a medical retirement a couple of years ago.

 

My Rheumatologist

 

Pic with Dr. Noaiseh

Dr. NICE – Leaving July 2019

Dr. Noaiseh (no-ice-uh), my trusted Rheumy. Dr. N was my 5th Rheumy (please see paragraph one..frogs). It took me a long time to find him. At first I was a bit frustrated with him. Because I have a severe immune deficiency, I cannot produce many of the antibodies that docs look for in diagnosing various autoimmune conditions. Dr. N was thorough with his tests, but most of my results were seronegative. It is frustrating for a patient who has raging symptoms to test negative, leaving the impression with the doctor that there is no diagnosis (or worse…it is in the patient’s head). I have had at least a small handful of doctors through the years suggest that I might wish to get a counselor. But as time went on, Dr. N began to acquire a handful of patients who share my same  immune deficiency conditions, one or more autoimmune conditions and the inability to test positive on various tests. He finally got it. He realized that a patient can have raging symptoms and not test positive for a specific condition. But more importantly, Dr. N will treat patient’s symptoms regardless of any seronegative results. Sadly for me, Dr. N was snapped up by the University of KS and will be leaving in July 2019. I am truly happy for him as he is beginning to be noticed within the Sjogren’s medical world. Though I will miss his kind and thoughtful standard of care.

 

autoimmune

 

My New PCP et al..

It took me almost 3 years to establish a new PCP. I mean just the thought of it for gosh sakes. I have so many years of medical records; too many diagnoses, etc. I didn’t want to go to just anyone. And the thought of trying to “break in” a new doc with all of my stuff just seemed overwhelming. I finally happened onto a nice PCP who happened to visit my mom when she was hospitalized. Dr. McMichael was in the same group of docs who treat the residents at my mom’s senior community and happened to be on call that weekend. I was selective in what I shared at my first appointment with him. His first effort was to order 2 MRI’s of my back — both of which indicated serious problems and resulted in a referral to a neurosurgeon.  I typically contact my immunologist when I am dealing with a respiratory event just because he knows me and my infections.  I am currently dealing with pneumonia. This report will be sent to my new PCP. I am guessing that Dr. McMichael now knows what kind of new patient he inherited.

 

doctor quote

 

And So It Goes

dream team stethoscope

Another day, another doctor…really! Yes, it has literally taken me years to establish my Dream Team of Docs and it is sad that I have to part with some great docs. But I have learned some important lessons through the years about self-advocacy and personal boundaries when it comes to the medical care I will and will not accept. Many years ago I believed that all doctors are supreme specialists in their area of practice. And even though I am a confident person, I had experiences of finding myself being spoken to in a condescending manner by various physicians. I would leave their office feeling upset, crying and questioning why I allowed anyone to treat me that way (in spite of their title and years of schooling).

Some physicians (one in particular I remember) were so rude and condescending that I swore I would never go to a doctor again. It takes a lot of strength and energy for a chronically ill patient to even drag themselves to a doctor. To be chided and spoken to negatively by an office staff or inconsiderate doctor (or both) is intolerable. Thankfully, the majority of physicians do not behave in such negative extremes. I am back to building my new dream team. If you are in the same boat, here are some tips:

  • Check local support groups (for your illness) to determine which doctors most of the members see. Sometimes you will hear a specific name over & over again..that’s a good sign.
  • Always check around with your network of family & friends.
  • READ all online reviews.
  • Research the potential doctor (notice several patient awards…that’s a good sign).
  • Check PubMed – Look at research your potential doctor may have completed He/She may specialize in your particular illness. Where were they schooled? Look at their university/board involvement.

 

Here’s hoping that you have put together your best medical dream team! May they all be there for you as long as you need them to be!

Happy Spring!

SjoDry

 

 

 

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Happy Fall Ya’ll

Happy Fall To All

Happy-Fall

Greetings my fellow Sjoggie-Mates. I am long overdue for a SjoDry update. Many of you (who are in my local Pittsburgh Sjogren’s Support Group) are aware that I have taken a break from hosting the group for awhile. My head is willing, but my body just can’t at the moment.

I have spent the last 9 months getting my mom moved from Florida and settled in Pittsburgh. She has dementia and we had no family there. It became seriously evident that I needed to get her here so I could care for her..so that is mostly what I have been doing. I found a lovely senior community with all levels of care for her to live in. She is living independently but with much assistance from me. Nevermind, that my house looks like a riot happened there, with layers of dust on everything..it is what it is. She requires a great deal of assistance and I am now her caregiver. I am not complaining, it is a labor of love. I will, however admit to having a handful (or more) of ‘chewing the enamel off of my teeth’ moments..but that happens to all of us in various situations, caregiver or not.

Awol

 

I May Have Been AWOL..

I may have been awol for awhile, but guess what..my Sjogren’s has not been. Yes, SjoDry still has a raging case of this moisture-robbing illness whether I like it or not. These days, I am not taking the Plaquenil, not did I continue the Methotextrate. I only lasted a month on the Methotextrate before getting a respiratory illness that made me miss most of a week of work. I feared that further compromising an already very compromised immune system (CVID) might have that kind of impact on me, and indeed it did. I also experienced a fair amount of chest pain while on Methotextrate. Not sure why, but after thoroughly questioning whether the chest pain was just my imagination or not, it became apparent that it was not. So for now..I continue to experiment with various (currently legal) supplements. I am still on LDN which I continue to swear by & think that all people should take like they do their vitamins. Don’t ask me why..or I might launch into my LDN-praising rant. Btw, take a look at the story I submitted on the LDN Science site (LDN Family Affair). https://www.ldnscience.org/patients/patients-stories

 

I will admit that since I am not taking the Plaquenil, my pain has greatly increased. My decision to stop it was based on large chunks of hair I was losing daily and the cost of it. I require the brand version when I take Plaquenil and it had become a ridiculous cash outlay in which my insurance was of little assistance.

neuropathy

 

 

Medical Marijuana – To Take Or Not To Take

Medical+Marijuana38

 

I certainly have enough pain, neuropathy and medical justification to qualify for taking medical marijuana, but I just can’t bring myself to that place yet. I feel like I should exhaust all avenues of pain control that I can. With that said, I have not had a great deal of relief from any of the CBD Oils or Kratom that I have experimented with. From my research on both products, I have learned that all strains and labs are not equal. Further, what works for one person (as with any med) may not work for another.

Red Kratom pills

K-R-A-T-O-M

I am currently experimenting with Kratom. (Kray-tum). If you are asking what is kratom, I will refer you to Google. My understanding is that it is a supplement that comes from some type of coffee plant. Currently, it is legal in most states, though there are huge arguments about whether it should be made illegal. People against it, swear that it acts like an opiate and is addictive. People that are actually taking it, swear by it’s effectiveness at relieving pain. Those professional folks who work with Kratom explain that yes, it does work on the opiate receptors, but not in the same way that opiates do. I joined a FB group on all things Kratom for awhile. I read both the pro & against articles and find myself in the corner of the chronically ill patient who is plagued with tremendous amounts of daily pain. Biased FOR the use of Kratom..yes that is me and perhaps you also.

Unless you have lived this journey of constant pain and the limitations of chronic illness, don’t judge. I had a friend complaining of some significant pain and side effects from a brain tumor she has. I suggested that Kratom might be helpful to her. Within 30 mins. of my suggestion, 3 of her other FB friends attacked my suggestion as if I had made an offensive political comment. I am a person who does my research as thoroughly as possible, no matter what the topic might be. I have now tried 3 or 4 different brands/strains of Kratom (there are different strains and the red strain is supposed to be the most helpful with pain). Not once has any of these products elicited any type of euphoria or high feeling. To me, it is like taking an Excedrin and then happening to notice that your headache is greatly minimized or gone a few hours later. I have not felt any kind of craving or need to have more either after taking a single dosage or the next day. Has it made my pain go away completely? No. I have never taken any kind of pain control (opiates included) that have done that.

While on the FB group, I read several posts about previously opiate-addicted people who started Kratom and no longer take opiates. They literally praised Kratom as life-saving for them. I happen to think that there is a portion of our population who live with chronic illness and truly suffer real pain. If you fall into that segment with me, then I am sure that you too, have also experienced the treatment of being treated like a drug-seeker when only wanting some pain relief. I think it can be a lonely place and one almost feels shame at requiring pain control. Who gets to be the judge and jury regarding whose pain is worthy of being treated or not?

Uh oh…looks like SjoDry went on a little rant on the injustice of how we chronically ill people can sometimes (often) be treated. My intent was only to update you all on what kinds of treatments I am currently using to do battle with my Sjogren’s.

Meditation

 

At the risk of repeating myself (which frequently happens), I think I also mentioned awhile back that I have been trying to meditate on a daily basis. I was sure that with my rapid-fire and racing thoughts, I would never be able to calm my little ole self down, but I am getting it folks. I do very well with most/all guided meditation and ‘okay..but improving’ when I just meditate without any assistance. It has definitely been a process for me to be able to learn to be quiet and go within myself. But what a fun vacation. It is a helpful way to escape our illness-filled human body. For that short period of time during meditation, you really can feel a relaxing freedom from everything. I highly recommend it if you have not tried it. You really don’t need a fancy class..just a set of ear phones & your favorite device that can get you to YouTube. There are so many F-R-E-E guided meditation videos to try on YouTube, you can do a different one every day/night.

More Happy Therapy

Another treatment I will begin taking soon, is my new role as first-time G-R-A-N-D-M-O-T-H-E-R! Yes, within a matter of 2-3 weeks, I will become a grandma and I am excited about that. I am told that it is very therapeutic to spoil one’s grandchild in every way possible. I feel that it is my joyful duty to find out. Babies are so much fun and my precious granddaughter (whose name I am not allowed to utter on social media yet) will be no exception. I began by helping to create a few things for the nursery. As many of you know, we own a small sign and graphics company, so we made a few artistic contributions (tree, quote & Woodland Masks) to the effort. Of course instead of going to Crate & Barrel & just buying the precious Woodland animal masks to match the nursery theme, I was sure that I could make them. (This is my recurring theme…oh I can make that). Nevermind that I have not made paper mache since grade school. Well..as I told my daughter, it was a labor of love, not skill sets!

 

 

 

 

So There It Is

 

Your SjoDry update..now working full-time in our business, playing the almost full-time role of caregiver, while starring in the role of the chronically ill & ‘in pain’ Sjoggie. I sincerely hope that you are all functioning at your best..whatever that may be. As I witness the changes that dementia has brought to my mom, I am grateful for the small and meaningful moments. Sometimes we get so caught up in our illness-filled lives that we don’t pay attention to some of those moments..but we do have them. Take time to appreciate those special moments. By that I mean that Sjogren’s can rob of us many things, but it cannot steal our joy unless we let it.

Take Care My Friends!

SjoDry

 

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SjoDry’s Brain Function

Or Lack Thereof..

out of order

Maybe it was an upgrade, or a new computer or maybe a new version of software..who knows. I typically only go to the (add post) section of my blog  to create a new post. At some time in the past several months, the format of my website back room changed a bit. I used to discover that I had post comments by email, in which I always tried to respond to very promptly (while I could remember to). However, those comment notifications quit coming to my email.

My Public Apology

Sad blushing face

When I had a little visit in my comment section today, I was horrified to learn that I have comments all the way back from 2016 that went unanswered. So sorry my Sjoggie friends (que blushing sad face). I would never ignore anyone’s comment on purpose, I appreciate hearing your experiences.

I Do Sjogren’s Very Well..

writing a note

I manage to live a raging case of Sjogren’s successfully but some of the “to do’s” on my life list still get lost due to the brain fog which resides in my head. Please know that I will always make every effort to answer your comments as soon as possible after you leave them. It may be the only New Year’s resolution that I make.

Stay Warm Friends.

SjoDry

 

 

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A New Year, A New Attitude

Party Pooper..Who Me?

Party Pooper

Well here we are, almost ready to ring in a new year. For the most part, I don’t get too excited about New Year’s Eve or the coming year. In fact, it’s probably like most other days, I struggle to stay awake to watch the ball drop in Times Square and look at inebriated people scream and kiss.

I suppose people are just into the excitement of the party and fun of it all. I’m not sure what that says about my lack of enthusiasm. Is it age, stage or chronic illness?

Always Hopeful

Hope

In any event, while not over-the-top with enthusiasm about what the new year will bring to me, I am always hopeful..and more so now. As I mentioned in my last post, I started low dose Naltrexone. While LDN has not been the panacea that I had hoped for, it has improved my quality of life significantly.

I had such high hopes for LDN that I immediately decided that I would not be needing my Plaquenil or Prednisone any longer. That decision proved to be too enthusiastic and premature. I was quickly reminded of how strong pain in every body part feels. Back on the P & P I went. So what has LDN done for me you ask?

I started LDN on August 22, 2017, about 4 months ago. The biggest benefit of LDN for me has been the increase in my energy level. Before taking the LDN, my debilitating fatigue level forced me onto my lawn chair cushion on my office floor at least once or twice a day on most days. I no longer need to do that (most of the time). I should clarify that both prior to and for a few days after my IVIG infusion (every other weekend), I do still have a great deal of fatigue that may require said use of lawn chair cushion mentioned above. But during my small window of ‘optimum’ functioning, I am functioning with much more energy and that alone has made the LDN worth taking. It has not been as successful at managing all of my pain, but it has lessened a small bit. I will say that I am functioning far better without opiates than with them.

So What’s The Plan For 2018?

2018 colorful

One of the current supplements that I have been researching is CBD oil (Cannibidiol Oil). CBD oil is a chemical compound that comes from the hemp plant. There are versions of CBD oil that do contain trace amounts of THC (the ingredient that causes euphoria), but most CBD oils do not have THC. And as a supplement, CBD oil is legal in all or most states.

CBD Oil

I have read that in it’s various forms, CBD oil can be very therapeutic to we Sjoggie folk (or others) with chronic pain. However, one site suggested that many of the versions sold online have been greatly watered down and as such, may not be as helpful to those with chronic pain. This led me to wonder whether there are different strains of CBD oil (such as supplement types sold online vs. stronger versions sold in Medical Marijuana Dispensaries?) I am not even sure if there is such a thing or this type of distinction? In any event, I have decided to obtain my medical marijuana card.

Ducks in a row

I don’t know that I will start medical marijuana, but thought it would behoove me to get my ducks in a row, in the event that I need a stronger CBD oil or would decide to try the medical marijuana. I will discuss it with the MM doc. I still wake up several times a night in pain. I have read that MM is wonderful at helping people get a great night’s rest. Anyway, I am far beyond caring if anyone thinks that SjoDry has gone over the edge is now hooked on “the Mari-ju-wanna”.

No New Year’s Resolutions

Say No to NY R

I am also not big on declaring all of my coming year’s resolutions for myself..it just embarrasses me later. A couple of things that I started and have resolved to continue, are hypnosis and meditation. I have found that both of these practices are very helpful and enjoyable to me.

meditation

Personally, SjoDry is a bit Type A and did not think it was possible to even shut down her chaotic mind EVER…but I have actually learned how! Not only that..but it’s a fun, peaceful vacation. Who knew that an escape inside your head and yourself could be so fun and relaxing. I have been using meditation, hypnosis and visualization with my pain as well. Finding the time and forcing myself to do it can be a challenge, but since making the commitment to it, have been more consistent. I find that a nice dark and quiet room (with my great eye mask..you remember the one I bought for our trip to Rome that looks like a black Victoria’s Secret bra), is the perfect setting. Despite the inevitable visit and leap onto my person from our six pound dog, Ivy during most of my meditation/hypnosis sessions, ..I am loving this meditation/hypnosis stuff. If you have not tried it, I would highly recommend it. Nothing to lose right!!

Cheers To You My Sjoggie-Mates!

You'll see it when you believe it

So there it is, my end-of-year update with my planned positive attitude for 2018. I will declare that 2018 is going to be a great one for my health, my happiness, my prosperity and being a blessing to others. How do I know this?

I know this because I know that you have to BELIEVE IT to SEE IT!

Happy New Year!

SjoDry

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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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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