Monday, May 18, 2020

A Therapy Merry Go Round


I feel as though I were a five year old version of myself this morning.

Well, a five year old saddled with aches and pains and covered in a rash. Oh, brother.

This kiddo version of me has been on a lengthy merry go round ride and hopping from one horse to another.

Ooo. I like this one -- no, wait, this saddle is uncomfy. Maybe this one? No, it's too tall for me to get up on. *stumbles to next horse* Waaahhhh! I fell off this one onto my head! And this one isn't going round and round at all!

I have failed yet another DMARD -- disease modifying anti rheumatic disease -- medication. Which makes me feel like that five year old looking for that perfect horse on an amusement park ride. This morning, I'm in the middle of a lying on the floor flailing my arms and legs and wailing tantrum because I want to be like all of the other kids! I want to be sailing around in circles with my pigtails flying in the wind on a beautiful carousel, too! I need to find the perfect merry go round horsie that will deliver that kind of experience but my horsie seems to be always just beyond my grasp.

Sniff, sniff......pardon me as I blow my nose and set aside my self pity for a minute.

So why have I been on a DMARD merry go round for seventeen years, you ask? I ask myself the same question. Repeatedly. Especially after yet another drug trial that ends in either catastrophic side effects or lack of any effect whatsoever.

My autoimmune diseases have gifted me with several symptoms which include dry eyes, dry mouth, sluggish thyroid, foggy brain, peripheral neuropathies, joint pain, vasculitis, a lupus head to toe skin rash, neutropenia, and bone crunching fatigue. So I find myself on a decades long journey to find something - anything - that helps tame at least a few of these nasty beasties that have traveled with me since 2003.

I have recently had to hop off injected methotrexate, the latest horse on my pharmaceutical carousel ride. Dr. Young Guy and I were hopeful that after three months without further drops in my already low neutrophil counts and a lull in skin rashes, that this could be THE ONE. But alas, gradually over the last month my rashes began to return and my joint pain and fatigue came roaring back full force.

I could attempt to list here all the medications and therapies that we have tried, but that would just prolong my tantrum. Suffice to say that the list is long and yes, does include various and extensive dietary modifications.

Which leaves my amazing rheumatologist scratching his head and doing yet more research into treatment options for me. Thank goodness for telemedicine during this social distancing time. It is so easy for me to simply send pictures, have phone appointments, or video appointments. I can stay in touch with my care providers with a click of my keyboard.

If only the answers to my problems were accessed as easily.

Are you in the same amusement park as I am? Betcha anything a majority of my readers are. What do you say we just skip the whole thing and go get some cotton candy?

Thursday, April 2, 2020

Lockdown without losing my marbles

Image found on Wikipedia, here. 

Well, without losing any MORE of my marbles that have long since left the marble bag, anyway....

So. How are y'all managing this social distancing thing? Are you one of those working from home? Not working from home? Chasing your kiddos around home? Hanging around home? Loafing at home? Following all of the directives and staying home?

Um -- are you one of those admirable people that are using this time to improve yourself by learning a new skill, or improving your physique?

YOU ARE?

Whoa. I'm not. I wish that I were; but y'all should know me well enough by now to know better. Yes, my Bratty Inner Child Julia is bouncing off the walls around here. Every time I try to corral her and suggest some kind of useful activity or learning opportunity, she just blows a raspberry in defiance and goes back to playing her four thousand-th game of Candy Crush.

In stark contrast, John is working diligently from home. He has an impressive bank of computer screens on his expansive office desk here at home with his keyboard at the ready. From his executive style office chair, he manages his job efficiently and tells me that by eliminating the in-person incidental contacts he experiences when working in his office, he is actually more productive from his home headquarters.

I'm impressed.

For the most part, I try to stay out of his way during his workday. Well, I TRY. But it is great having him around. Just knowing that he is here and being able to converse with a non-schnauzer person during the day is great.

I beg your pardon. Sniff.

No offense, Lulu girl. I love you, you definitely communicate amazingly well, but your human vocabulary is somewhat limited.

Just sayin'.

So Lulu and BICJ and I have been passing our days alternating between fussing around outdoors, Netflix, cable news, and just plain goofing around. King, the genius game studio that created the Candy Crush games, has generously offered unlimited lives to its players this week. Which is kind of dangerous for my dry eyes and arthritic hands seeing as it is all too easy to mindlessly play these games for far too much time.

After John signs off his computer for the day, things become a little more interesting around here. We
have been working on jigsaw puzzles, cook together, and enjoy a happy hour on our front porch every day. Which is delightful. Some of our happy hour concoctions are tastier than others. I wouldn't recommend this one, which we saw on a newscast, and was dubbed the "quarantini": It's EmergenC and vodka. Blech.

I prefer my tame spritzer hard cider, which is cider diluted with club soda. Much yummier.

We plunked a card table in our living room and cracked open a jigsaw puzzle. Which, I might add, is NOT PLAYING FAIR because its pieces have several straight edges on pieces that are not edge pieces. Isn't that breaking some kind of puzzle rules?


I am so grateful for the expansive view that we have from our house. It is always changing, either by time of day or cloud formations or weather conditions. I think it's endlessly entertaining and can spend an amazing amount of time in front of my windows or perched on a lawn chair outdoors.




I am also grateful for the technology that allows John and I to see hear and talk to our friends and family. Can't imagine if that were not available right now. It is so reassuring to see my kiddos all healthy and happy in pictures and videos and FaceTime chats.

I care about all of my readers, too. So please tell me how you are feeling and what ways y'all are passing the time these days. I sincerely want to know.

And I really, really want all of you to be around on the other side of this pandemic, so stay home. And be well.

Stay in touch.

Thursday, March 26, 2020

Dr. Sarah Schafer: Am I at increased risk for COVID-19?


I've mentioned the excellent blog written by Dr. Sarah Schafer a few times, and for good reason. It's a stellar source of information and advocacy for Sjogren's syndrome. 

Dr. Schafer has written another post for Sjogren's Advocate, this one timely given the worldwide attack of COVID-19.

Take time to go to her blog and read it. The information that it contains is of vital importance: 
Am I at increased risk for COVID-19? 
YES.  Sjogren’s patients are at higher risk for infection and serious complications of infection.

My opinion about this is shared by many, but not all, rheumatologists. Because the virus is new, at this time there are no data to analyze that will show how Sjogren’s patients will fare with COVID-19 disease. This could take a year or more to determine.  We don’t have the luxury of waiting to find out. Patients need to know now if they should take extra precautions to prevent serious outcomes, including death.  Fortunately, a lot is known about the impact of Sjogren’s on the lungs and the immune system. The existing facts strongly suggest that  Sjogren’s patients should take extra precautions to avoid COVID-19. 

The UK National Health Service just published a guide for rheumatology care, stating that Sjogren's patients ARE at high risk. Being older (60 +), being on immune-suppressing drugs, or having lung disease will further increase the risk.


Why Sjogren’s patients are likely to be at increased risk for serious complications with COVID-19:
   
1. Dryness decreases surface immunity, the first line of defense.
The mucus layer is a critical first step to avoiding infection. This moist layer creates both a physical barrier and an immune system barrier from the outside world to the lungs.  Dryness decreases this important surface immunity, making the airways and lung tissue more vulnerable to infection.

2. Lung disease, a common problem, increases risk for complications if infection does occur.
About 10% of patients have interstitial lung disease (ILD) with symptoms. Many more (up to 50% plus) have signs of ILD on high-resolution CT. Moreover, there are many other types of lung disease that Sjogren’s patients have, often undiagnosed. Lung disease is a known risk factor for COVID-19 complications.

3. Dysfunctional immune system
Sjogren’s patients do not have normal immune systems. An overactive immune system does not mean better protection against infection; the overactivity is misdirected.

4. Immune suppressing drugs
Many drugs such as methotrexate, prednisone, Cellcept, Rituxan and others suppress the immune system. These increase the risk of serious infection.

Note: Hydroxychloroquine (HCQ, aka Plaquenil) is not an immune suppressant, but an immune system modulator. Do not assume that taking HCQ will protect you from infection. Despite media reports, this has not been proven with reliable studies! 
Continue reading here.

While you are on the Sjogren's Advocate site, be sure to take a spin around and explore all of Dr. Schafer's information and resources. It will be time well spent.

Friday, March 13, 2020

COVID-19 and Sjogren's

Recently I was prompted (and rightly so) to write a post that address COVID-19 and Sjogren's syndrome. So I unglued my eyeballs from the cable news channels, went looking for data and found that of course the Sjogrens Syndrome Foundation has put together this excellent information: (Bolding mine).

COVID-19 Sjögren's Precautions

Coronavirus / COVID-19
Precautions for Sjögren's Patients

The Sjögren’s Foundation, in concert with our medical advisors, is closely monitoring the coronavirus/COVID-19 and what 0ur patients should be doing.
As a Sjögren’s patient, your risk is not necessarily higher for getting the coronavirus than others, but if you do get diagnosed, you should let your physician know that you suffer from Sjögren’s and that you may be at higher risk of complications from COVID-19.
Certain people are at a higher risk of developing serious complications from COVID-19. These include people:
•  Over the age of 60
•  Pregnant women
•  People with serious chronic medical conditions such as heart disease, lung disease, diabetes, kidney conditions, or people with compromised immune systems
As a note – not all Sjögren’s patients have compromised immune systems. This specific risk factor is for those who regularly take drugs to suppress the immune system. Examples include prednisone, methylprednisolone, Imuran, azathioprine, methotrexate, leflunomide, Arava, CellCept, mycophenolate, Rituxan, cyclophosphamide.
Please note that hydroxychloroquine (Plaquenil) does NOT suppress your immune system and does not increase any risk for a more serious illness from COVID-19. However all Sjögren’s patients should still be diligent and be tested if symptoms become present.
Take cautionary steps in your everyday activities:
As the number of cases keep rising in the United States, the Foundation is encouraging all patients to consider taking necessary precautions as outlined by the Centers for Disease Control and Prevention (CDC) to reduce your exposure. These precautions include:
•  Wash your hands often with soap and water for at least 20 seconds
•  Cover your cough/sneeze with a tissue or your elbow. Throw used tissues in trash
•  Avoid touching your eyes, nose, and mouth with unwashed hands
•  Wash hands each time before applying eye drops, dry mouth or dry skin products
•  Avoid touching public surfaces
•  Clean and disinfect frequently touched objects and surfaces
•  Stay home when you are sick
•  Avoid people who seem visibly sick
If the coronavirus is active in your community, consider avoiding crowded places or situations. If there isn’t an active virus near you, please consider your personal health condition as you decide whether to go to where there are a lot of people.
Prepare in Advance
In case your physician and/or local authorities advise you to stay home for an extended time because of coronavirus, be sure to prepare in advance for such a situation:
•  Review the medications that you are taking to be sure that you have enough for an extended time. Find out if your pharmacy can deliver refills
•  Stock up on food, beverage and hygiene supplies
•  Prepare a list of health care providers with contact/access information
•  If you live alone, gather a list of contacts who you might call on if needed, such as friends and neighbors
Symptoms of coronavirus?
Common symptoms include fever, cough, and shortness of breath.
If you have any of these symptoms, you should CALL your doctor, local hospital or health clinic for advice and how best to be tested.
As someone who has been taking immunosuppressant drugs AND currently has a low neutrophil count AND has asthma, you can bet your sweet bippie that this girl will take these precautions super carefully. 
Even my bratty inner child Julia is taking this seriously. She really wants to be around to create havoc in the future. 
So y'all be careful. OK? I want you all to be around in the future too. 

Wednesday, February 5, 2020

I'm Baaaaaaack.....

Like my newly manicured nails? The result of a triumphant in-your-face-dumb-stupid-shingles-virus outing.

Well, hello life, again! I have missed you!

Whew.

I am so happy to report that I am feeling much much better. I'm still having some pain, but it is well controlled with non opioid drugs. Controlled enough that I can toss my bra and clothes on in the morning without agonizing about the softness factor for each clothing item.

I can have friends over, can go out shopping, have taken a four hour car ride to see my kids, can go to church.

That is so huge.

I still need to meter out my energy carefully. In fact energy is the factor that limits my activities these days rather than pain.

So I raise my glass of highly diluted current and apple hard cider in a joyful toast to a return to normalcy.

Whatever that turns out to be.

Thursday, January 16, 2020

If my viruses could talk....

.......they'd be saying, Not so fast, Missy! You think you're really going to have a fast recovery? Well, think again.

Oh, brother. After Christmas, when my shingles rash began to rapidly disappear, I assumed that my pain would leave with it. Woo hoo! I thought it was safe to let the recovery celebration commence.

And, as it happens far too frequently, I was very wrong. I just couldn't understand why I would still wake up in the early hours of the morning in serious pain; the kind that feels as though a burning poker were stuffed through my torso. It left me scrambling for my pain medications and then stuck in a very uncomfortable and frustrating hour long wait for the symptoms to gradually subside.

It just didn't seem logical that I would continue with this level of pain even though the rash had almost completely healed. So I did some reading and discovered with my dismay that what I was experiencing wasn't unusual. At all.

Oh, great.

I was getting close to needing a refill on my pain meds, so I called my internal medicine doctor's office and was informed, that, yup. This could persist for THREE MONTHS. During which such time it would be still considered normal shingles recovery. If, after three months, the pain was still present, then the condition would morph into something else: postherpetic neuralgia.

I do not want to deal with this. Seriously do not want. Here's why, this found on NIH PubMed site found here. (HZ refers to the shingles virus Herpes Zoster):

POSTHERPETIC NEURALGIA 
Postherpetic neuralgia is a debilitating complication of HZ. The risk of PHN after HZ increases with age. In a large population-based study, the rate of PHN (defined as at least 90 days of documented pain) increased from 5% in those younger than 60 years to 10% in those aged 60 to 69 years and to 20% in those aged 80 years or older.3 The pain results in large part from damage to the sensory nerves, causing neuropathic pain. The pain is often intermittent and not correlated with external stimuli. Paradoxically, areas of the skin that lack normal sensitivity to touch may be associated with increased pain. Light touch or the brush of clothing is sometimes perceived as being painful, a phenomenon called allodynia. It is not uncommon for the pain of PHN to interfere with sleep and recreational activities and to be associated with clinical depression. 
Many patients do not understand why their pain lasts after the rash has healed. Some fear that they are imagining the symptoms or that their complaints represent a weakness in character. Patients should be reassured that their symptoms are real and represent the unseen and persistent damage to the sensory nerves. 
Unfortunately, there is no intervention that reliably relieves the pain of PHN. Effective therapy often requires multiple drugs. Therefore, it is essential to undertake treatment in a systematic fashion that will allow appropriate assessment of both benefit and adverse effects for each drug. If 2 medications are started simultaneously and the patient has an adverse reaction, it will often be necessary to eliminate both medications. Another general principle is to have patients begin a medication at a very low dose and increase the dose gradually until either analgesia or adverse effects are noticed. Beginning with a dose that is lower than the anticipated effective level increases the likelihood of a beneficial effect before the onset of adverse effects. It is helpful to keep detailed records of medication trials, including dosage, benefit, and adverse effects.........continue reading here
My doctor and I both expect my pain to gradually diminish and fade away. But if it lingers past that three month mark, then it would be very important to have a pain management plan in place.  My doctor has discussed with me, and I totally agree with her, that the use of narcotic medications in a long term pain relief situation requires very careful consideration.  It's in my best interests to experiment with other non-narcotic or opioid medication solutions to avoid the potential for addiction. Here's our plan of attack on my pain currently:

We have added a tricyclic antidepressant medication to my pile of night time pills. In my case, it isn't being prescribed for depression, but some studies have suggested that its us may help in treating chronic pain, especially neuro type pain.  I am also taking gabapentin, more commonly used for seizures but also found to be helpful in shingles pain, and having John apply capsaicin  cream to my rash site four times a day:
Capsaicin, an extract from hot chili peppers, is currently the only drug labeled by the U.S. Food and Drug Administration for the treatment of postherpetic neuralgia.19 Trials have shown this drug to be more efficacious than placebo but not necessarily more so than other conventional treatments.20 
Substance P, a neuropeptide released from pain fibers in response to trauma, is also released when capsaicin is applied to the skin, producing a burning sensation. Analgesia occurs when substance P is depleted from the nerve fibers. To achieve this response, capsaicin cream must be applied to the affected area three to five times daily. Patients must be counseled about the need to apply capsaicin regularly for continued benefit. They also need to be counseled that their pain will likely increase during the first few days to a week after capsaicin therapy is initiated. Patients should wash their hands thoroughly after applying capsaicin cream in order to prevent inadvertent contact with other areas.
I've got to agree wholeheartedly with the last sentence about capsaicin cream. Hoo boy. I mistakenly got some on my hand and then used the bathroom. I won't elaborate further, but take my word for it. Don't be putting that stuff where you don't need it.

Other non-narcotic strategies include very very gently placing a cold pack on my back; and wearing loose fitting shirts or blouses. Bras and seams and elastics sent me running in pain to my bedroom, flinging off garments as I went. Not a pretty sight.

The skin on my back is so sensitive to any kind of touch, that I despaired of ever being able to wear a bra again. Which also wouldn't be a pretty sight. But then I saw this bra, on a very rare outing:




It is made of a very lightweight stretchy fabric. The edges are not hemmed, so are perfectly smooth. When I wear it, I can scarcely tell that it is there. Heaven.

I think one of the best pain relief techniques is diversion, and this little guy provides the best diversion of all:


That little face! Those pink cheeks! That sweet smile! Aren't grandkids therapeutic? Absolutely.

Tuesday, December 24, 2019

A Christmas Wish for Good Things for All

Hi guys. I got my Christmas gift early this when I began to recover amazingly fast.

Funny. Seems as though this disease took ten days to manifest, but when it began to disappear, it did so almost  magically.

Alleluia! A Christmas miracle! I was able to go out to lunch to celebrate the beginning of my recovery. What a gift it is to be feeling as though I can participate in the Christmas shenanigans ahead.

Well, some of the events. My body is seriously deconditioned after my three week long siege of medical events. I plan on taking it slow and have promised my family that I will listen to my body and heed it's warnings.

So I'm extremely thankful today for an improvement in my health, for all of my wonderful family around me, and the fabulous commotion that has ensued.

I'm also thankful for you -- the friends that really understand and care. Bless you all.

If you celebrate, I wish you the very merriest of Christmases, and Hanukkas, and any other wonderful holidays!



Another Christmas miracle! Pinky is reincarnated into Pinky 2! And the pinkettes live on!




Friday, December 20, 2019

To Vaccinate or Not to Vaccinate

.....is an ongoing hotly discussed topic these days. I fall squarely into the vaccinate camp; but I'm not going to judge those that choose otherwise.

SO

Today's post is written with the simple intent to provide more information, specifically the shingles vaccine.

I was chatting with a friend yesterday, and asked her if she had considered receiving the shingles vaccination. She was super supportive and was kept informed of every gross disgusting and painful detail of my experiences lately. So I was really surprised at her answer, which was,

"Well.....I don't know...." here she wrinkled her nose. "I know someone that had that vaccine and her arm was sore for TWO WHOLE DAYS."

Really? REALLY?

I couldn't believe it. "You'd risk going through what I have been going through for the past three weeks because you don't want to deal with a bit of arm soreness for a couple of days?!"

She shrugged.

It was time to bring out the big guns. I hadn't planned on sharing this but desperate times called for desperate actions. It was time to show her THE PICTURE.

Yes. The one that I'm going to share with y'all.

*Disclaimer: this is really disgusting. So scroll down really fast if you have a weak stomach*


Me. That's ME. I still can't believe it.

This pustule laden rash continues around under my left arm and over the left side of my chest. The picture was taken two days ago, and today has progressed in that the blisters have popped leaving big chunks of raw open lesions across my back.

Delightful.

My friend's jaw dropped in shock. She was stunned.

I don't know what people think a shingles rash looks like or feels like but it isn't pretty or comfortable. For me, my symptoms are severe enough to require three prescription drugs: the antiviral acyclovir, large doses of gabapentin, and opioid pain medication. I feel like a zombie but that's a huge improvement over dealing with the debilitating pain.

I'd give almost anything to have been able to receive that vaccine that could have eliminated or made this experience far less severe than it has been. And I would have -- if only I had had decent white cell numbers this summer and fall.

Ah, well. I most certainly will get it as soon as it is safe to do so.

As I said earlier, I don't want to judge anyone's decision here. I just want to provide adequate and truthful information so that an informed decision can be made.

Currently, there are two versions of the shingles vaccine. Check with your physician to see which is right for you. Here's the dope about this vaccine from the CDC, found here. :

What Everyone Should Know about Zostavax 
Your risk of shingles and postherpetic neuralgia (PHN) increases as you get older. CDC recommends that people 60 years old and older get shingles vaccine (Zostavax®) to prevent shingles and PHN. Shingrix (recombinant zoster vaccine) is the preferred vaccine, over Zostavax® (zoster vaccine live), a shingles vaccine in use since 2006. Zostavax may still be used to prevent shingles in healthy adults 60 years and older. For example, you could use Zostavax if a person is allergic to Shingrix, prefers Zostavax, or requests immediate vaccination and Shingrix is unavailable. 
Zostavax (zoster vaccine live) was licensed by the FDA in 2006. This vaccine reduces the risk of developing shingles by 51% and PHN by 67%. It is given in one dose as a shot, and can be given in a doctor’s office or pharmacy. 
Who Should Get Shingles Vaccine? 
People 60 years of age or older should get shingles vaccine (Zostavax). They should get the vaccine whether or not they recall having had chickenpox, which is caused by the same virus as shingles. Studies show that more than 99% of Americans aged 40 and older have had chickenpox, even if they don’t remember getting the disease. There is no maximum age for getting shingles vaccine. Continue reading here
My friend gulped and told me that perhaps she should go get herself vaccinated. If you are on the fence, read the information and give it serious thought. Shingles is a disease not to be taken lightly.

Wednesday, December 11, 2019

Well, Shoot.

Image explaining dumb stupid shingles found here

Awhile back, reader Shara left a comment on a post that went something like this: Whatever you're doing, you're doing it wrong.

I agree. And I sure wish I could figure out what that wrong thing is. Because today apparently I did that mysterious wrong thing again: I found out first hand how painful and debilitating shingles can be. Dang. That's a seriously wrong thing.

Yup. Shingles.

So it appears that my low white blood cell count triggered an activation of dormant varicella zoster virus in my dorsal nerve root ganglion -- they've been hanging around since childhood chickenpox -- which manifested as painful itchy blisters covering the left side of my back, side and chest.

I'd post a picture but it's just gross. You guys don't need to see that.

You can read more about this nasty dumb stupid very poorly timed disease here.

Previously, I didn't understand how severe the pain from shingles can be. I assumed it was simply an irritating and itchy rash. But this pain seems to go straight through my core. So strange. I have developed a new appreciation and sympathy for anyone afflicted. Yikes.

It's a good thing that I did most of my Christmas shopping and decorating and gift wrapping far ahead of my usual schedule. The house looks all festive and there's piles of brightly colored packages underneath the tree.

If I hadn't done that, I'd be in a world of angst right now. Thankfully, at this point all I have to do is take my anti viral drugs, my pain pills, and my gabapentin medications and hopefully sleep for a week until this passes.

My white blood cell count is still below normal. So do me a favor? Think high numbers of whites and very very low numbers of virus for me?

Much appreciated.

This too, will pass.

Friday, December 6, 2019

Thankful

I love fall. Especially Thanksgiving. Once again, our holiday was marked by a home filled to the brim with family and friends and lots of good food.

We were fortunate to have beautiful weather.


The preparations were great fun. I bought a new rolling pin, even. It performed admirably and together we whipped out six pies.


My girlies bought a couple of turkey gingerbread kits and assembled them. Aren't they a scream? I just loved them.


And then there's great fun setting the tables for 26 guests. Good thing I had lots of help.




For me, the biggest challenge in putting together a meal of this size is making sure that all of the food is finished, hot, and tasty at the same time. Which, hopefully is also the time that we've decided on for dinner. A schedule strictly adhered to helps.


Twenty six servings of gravy is a lot of gravy.


The last hour before we serve the meal I become a steely eyed and hard nosed general; directing my troops with no mercy. Luckily for me, my soldiers are happily compliant and dinner was served smack dab on time.

Whew.

Yum. Here's a few of the pies.


Lulu was exhausted at the end of the day.


Such a big schnauzer yawn. We all yawned and contentedly napped after. What a great day.

Ah, but I'm looking forward to Christmas coming soon, so took advantage of the many willing hands later that weekend; Thanksgiving was packed away, and out came the Christmas tree.

Marcus found the tree box to be the BEST TOY EVER.


I'm still resting and recuperating after all those shenanigans.

Hope your Thanksgiving was a happy one.

Talk to you soon.

ShareThis