Saturday, April 27, 2019


As I was bending down performing the simple task of rearranging the unhinged blankets on my bed yesterday (yes, others might refer to it "making" my bed) a strange sensation suddenly came upon me.   A foreign, yet somehow familiar, feeling had descended upon my scalp and run down onto the right side of my face.  A pins-and-needles sensation was washing over the frontal right side of my head with great intensity.   The whole area had fallen "asleep."  Was this a stroke?  I quickly lifted my arms up over my head and attempted to smile - checking for the classic signs of a stroke.  All was well on that front.  Could it be an aneurysm?  Was it somehow connected to the pain I had been feeling on that side of my face?   I had been experiencing what I had described as "funny" face-aches for a few weeks now: a sharp, stabbing, pain that began over my eyebrows and ran down to the bottom of my nose.  A particular path of pain that was as linear as a backup on the New Jersey Turnpike. Within seconds the attack subsided, leaving a slight feeling of numbness around my eye.

The reason I was so startled with the appearance of a new symptom would correspond to the reason I have not posted in many months: for I have been overrun with new symptoms and conditions since the New Year began; symptoms which have left me wiped out and unable to function properly.  In January, as we know, I was diagnosed with interstitial lung disease and started treatment prescribed by my physician at Johns Hopkins while I waited for an appointment in their lung disease clinic. I instinctively attributed the complete crappiness I then began to experience to the high doses of prednisone I was ingesting, but I had begun treatment with an immunosuppressant and a prophylactic antibiotic within the same week so it was hard to pinpoint the cause of my weakness, fatigue, blurry eyesight, racing heart, lightheadedness and dizziness.

It was suggested that I begin to check my blood sugar - oooooooooh!  A level of 372?  I had suddenly acquired steroid-induced diabetes and now needed to add this to the list of conditions I dealt with everyday.

When reduction in prednisone and discontinuation of the immunosuppressant brought no relief or change in my labs, I eventually spent four days in the hospital recovering from a reaction to that antibiotic; a reaction which was so rare my local pulmonologist had only encountered it four times in his 30 years of practice.  I still thank my heavenly stars that he noticed a slight blue tinge to my lips - a  symptom of the lack of oxygen this reaction produced.  In fact, the pulmonologist which I eventually saw at Johns Hopkins had only seen this reaction in one other patient before.

What was the path forward?   How long would I spend in recovery?  No one was able to answer me, for there hadn't been enough cases of Methemoglobanemia for researchers to predict the outcome.

In the mean time it was suggested that I visit a cardiologist about the sudden rise in my pulse every time I stood up.  After my EKGs, echo cardiogram, and nuclear stress test all came back normal, the cardiologist diagnosed me with POTS (Postural Othostatic Tachycardia Syndrome) and I had to wrestle with the acceptance that my neuropathy had begun to invade my autonomic nervous system - a suspicion which had been lingering in my mind as I dealt with an intolerance to heat which would leave me sweating around my head for at least 15 minutes each time I came near a hot item, performed any exercise or exertion, or spent time in a hot environment.

When will it ever end? 

WILL it ever end?

I decided to stand up and take stock of my physical symptoms.

Beyond the whole dry eyes, mouth, and skin problems (which had caused me to develop corneal erosions, numerous cavities, and need for root canals) my joint pain has been put on hold by the prednisone.  But once I looked in the mirror, I was quickly reminded of the disfiguring presence of my "moon" face and swelling of my eyelids.  I felt the hump of swelling on top of my back and those around my neck and clavicle bones.  THIS was the price I now paid for reduction of inflammation in other areas of my body.  And, although I had been allowed to reduce the dosage of the steroid, the swelling produced by greater amounts has not returned the favor by rescinding in equal measure.

I know it is completely pointless to compare myself with other people, but then I continued to take stock of the rest of my body and ask:

Does anyone else take for granted that the bottom half of their right leg will feel like it is asleep each and every time they stand up?   Are they guaranteed that the same sensation appear in their left foot as well?   Will their nights be spent in agony with burning feet that must rest outside of the covers?  Will they live in terror of waking up with a skin "ache" which resembles the sensation of ants biting their skin?  Will their arms and hands fall asleep as they attempt to drink a cup of coffee? Do they live with a tremor in both arms until at least noontime?   Is there anyone else who spent a week in the hospital - presenting with septic shock - from an infection which my body was unable to fight off due to a rare reaction to Imuran?  Had another patient won the lottery of rare reactions - encountering two of them which required hospitalization in two years?  And now it appeared I had acquired hemolytic anemia as a result of the methemoglobanemia.  Ever have that?  Why was my bladder suddenly leaking?  My vision now blurry?  Was my established peripheral neuropathy now creeping into the autonomic realm for good?

Do YOU take 13 medications each and every day of your life?   Does your intolerance for heat leave you with a 15 minute sweating episode if you stand in front of a mere toaster?  Did you one day wake up and discover that, although you hadn't had the stamina to bend down in the shower and shave your legs for close to three months, there was no hair remaining on your legs to shave?   And had you - for who knows how long - been mindlessly shaving your underarms every time your showered, not realizing that there was no hair growing there as well?  If only you had known and could have conserved that small bit of energy you now reserve for a three-minute tepid shower before you crawl back in bed to recover from all of that activity.

"How much?"  you ask.  "Could there possible be more?"

Isn't being  a Sjogren's-rheumatoid-arthritis-lupus-autonomic-and-sensory-affected-neuropathic-thoracic-outlet-syndromed-GERD-and-Barrett's-esophagus-diabetic-paresthesia-formication (look that one up!) tremor-ridden-carpal-tunneled-methemoglobanemia-hemolytic-anemia-postural-orthostatic-tachycardia-syndrome-dysautomic-pulmonary-fibrotic-alopecia-affected-depressed-anxious-and-brain-fogged-person enough?

Isn't this MORE than enough for one person to bear?

Oh God, I hope so.  Please take this facial pain away for good!

Monday, February 4, 2019

In the Pred-ni-ZONE

Have you ever been on high doses of prednisone for any length of time?

I hadn't until recently.  Yes, I have been on and off of a maintenance dosage of 5 or 10 milligrams for a few years now.  I knew it helped my joint inflammation tremendously but a therapist had convinced me that even that small dose was making my anxious, so I lowered it to 2.5 mg at times - just enough to take that awful edge off my pain.


About ten days ago I got shot up to 60 mgs per day, and let me tell you that I am now in the ZONE.

Ravenous hunger?  It took about a week to arrive full force.
Weight Gain:  A-weighting its arrival on the battlefield any minute now.
Intense dryness:  About 8 days to traipse all generals through the desert and through sand in the face and eyes and mouth of a person with Sjogren's.  Another day to take that rough stone sand and rub it over the entire skin surface of someone who suffers from painful small fiber neuropathy.
Moon Face:   Waxing at the present time.  Red. Full. Puffy.  There is no Sea of Tranquility here.
Insomnia:  Cannot report on this one.  Even 60 mgs of prednisone does not make a dent in my fatigue.
Muscle Weakness, Shakiness, Fear:  Present and accounted for.
Mood Changes and Anger:  Who ME? (Although someone should tell my husband that I didn't really call that divorce attorney. . . )

All of this because the results of that CT scan that I feared so, were as I feared.  It showed a big jump in interstitial lung disease.  Autoimmune pulmonary fibrosis.  The progress most likely attributed to discontinuing Rituxan infusions when we thought they were not helping my joint pain, when - in all probability - Rituxan was holding back progression of the lung disease.  While awaiting my upcoming appointment at the Johns Hopkins Interstitial Lung Disease Center I have been placed on this ungodly amount of prednisone and Cellcept.  Both immunosuppressant medications - the combination of which strikes fear into my septic-shocked-heart when I think about my experience just two years ago.

Someone please get me out of this ZONE!

Monday, January 7, 2019

Has It Really Been that Long?

Yes, it was ages ago when I last wrote.  Ages.

Six months ago, in fact, because my last post was about my last CT scan of my lungs and here I am scheduled for my six month follow-up later this week.

I somehow survived a hot summer and an autumn which never happened.  I made it through the dreaded holidays, thinking I would be less anxious and fatigued if I never stepped into a store, finished all of my online shopping before thanksgiving, didn't shop for (or prepare) any meal or bake a single cookie.  Perhaps I was just a wee bit less anxious but the fatigue hit me with a bang nonetheless.

I never thought my fatigue could get any worse.

It has.

And my lungs?  I am scared to death about what might show up on that CT scan.

It was decided that I officially failed a year of Rituxan treatments,  I then proceeded to fail one month of subcutaneous methotrexate.  Next, Orencia infusions were declined by my insurance company, and am now waiting for my rheumatologist to tell me which of the TNF inhibitors I can try next - that is, after I get a TB test along with a HepB DNA test.

Did I ever tell you that I test positive for HepB?  Yup.  The world's most straight-laced-church-going-monogamous woman somehow contracted a case of HepB in her past;  hussie that I was.  It's gone, thank God, but I have to prove that once again because a patient can't go on any of these meds if she/he has active HepB.   I'm also cut out of some other meds because I've already experienced a perforation in my large intestine.

Lucky Lizzie, you can call me.

So that appears to be all.  I promise to post more often.