The Poison Miracle

It does exist.  AND I WAS AWAKE FOR NEARLY FORTY EIGHT HOURS AS LIVING PROOF.  Its name is Solumedrol and it is a steroid. 

 

The Miracle Part:  I have been virtually incapacitated since I got out of the hospital before Christmas.  Walking was agony. The soles of my feet have been on fire due to neuropathy.  Having anything press against them, even brush against them, was torturous.  My legs were too weak to swing up onto my bed anymore, so what little I slept was either in a recliner or sitting on the side of the bed, leaning against a pile of pillows.  Because it hurt so much to take even a few steps, I could not sew at the sewing machine.  Or get to the bathroom promptly.  I have been getting progressively shorter of breath.  Even though I am using the ventilator, I am gasping for breath with the least exertion. Getting to the kitchen to make so much as a cup of tea brought me to tears because it was just so darn hard. As a matter of fact, that is practically all I did, sit and weep in spurts as I brooded over everything and anything.  I was frantic and terrified about having metastasized cancer.  I sobbed over the children I miss so much and prayed desperately I could make things right again.  I don’t like television, and couldn’t focus anyway, so I didn’t watch it.  I couldn’t concentrate on reading.  Wondering how long I even have left, I just saw a lifetime of this humiliating  suffering ahead of me, knowing despite what some people believe, I am neither brave nor dignified.

 

It finally occurred to me to call the doctor and ask for some help.  Thursday I started a course of intravenous Solumedrol at approximately 3 p.m.  By 4:30 Friday morning, I had significantly less pain on walking.  I was already a little less short of breath.  My feet were not burning as much.  I did spend the night in the recliner in the sunroom (even though I didn’t sleep), but I was relatively comfortable for the first time in months.  I watched two British TV series (Broadchurch and Collision, both fantastic) and actually was able to concentrate.  I even made a cup of tea without crying.  This won’t last forever, relapses are inevitable, but steroids truly are a miracle for now.

 

The Poison Part: Steroids affect every part of your body, just like MS, only in different ways.  They cause weight gain and salt retention.  (Although I am the only person in existence who could develop a wasting disease and not actually waste).  It causes increased blood sugar.  A higher likelihood for infection.  Lowered immunity.   Hair loss.  Mood disorders.  Skin problems.  Increased blood pressure.  Weakened bones.  Kidney problems.  INSOMNIA.  Is that enough?  Ironically, I don’t get a common side effect that I am prone to when I am not on steroids: depression.  Perhaps it is simply relief, or maybe I am going nuttier than usual, but I am positively giddy with happiness right now.

 

Belated Holiday Update

Christmas was lovely, thanks to my daughter, who, despite being eight months pregnant, made it a peaceful, blessed holiday.  She decorated the house beautifully and we had a fun Christmas morning with Maddy.  The only pall over the season was the absence of my other three children.  I miss them so much sometimes I literally cannot breathe.  Just talking about them or looking at their pictures, those beautiful, precious faces that I love so much, makes me cry.  I lived for them.  Without them I often feel I have nothing left to live for.  I try to force myself to remember to focus on what I do have, my God, my daughter, the two grandchildren I know, my fifth grandchild due any minute, my friends and loved ones.  They are my blessings.  I must be grateful for them.  I am grateful for them. But I am truly bereft at what I am missing.

 

Computer Issues

Because I sleep so poorly and because I am on this wild cacophony of medications, I am notorious for spontaneously falling asleep.  I fall asleep talking on the phone or in person, it makes no difference, and there is usually no warning.  At least twice I have conked out on my dear friend Robin, who is a perfectly interesting and entertaining companion.  But to my humiliation and regret, I have managed to lose consciousness despite her many charms.   She has let herself out.

The worst part of this is falling asleep with a cup of something in my hand, whereupon I will wake up bathed in the substance.  This is not fun.  Thank goodness I have not had a boiling cup of tea in my hands, but I have had many a tepid one.

Not too long ago I dozed off holding a small cup of ice cream.  It melted and seeped under some of the keys on the left side of my laptop.  When I did finally wake up, the keys were sticky, but functional.  After two weeks of this I got a brilliant idea.  The ice cream didn’t hurt the laptop, but the stickiness was irritating.  So, I thought I would try a few drops of water to wash away the ice cream.  Yes, that is correct, I, the product of approximately 22 years of education, decided to wash out my laptop with actual water.   

It took me roughly 30 seconds to completely destroy it.

I tried blowing on the keys to dry them (I have a lot of hot air, as anyone who reads this blog is aware).  I tried the hair dryer.  I tried the ever popular shake-it-real-hard and its cohort, bang-on-it.  Finally I admitted defeat.  Mary Kate took it to the Geek Squad at Best Buy, but they couldn’t salvage it either.  I had to get a new lap top, although I did get a bargain and the Geeks transferred my hard drive to the new one.  But something must have traveled with the old files, as I am having tough time with the new computer.  I cannot access my e-mail, Foxfire or Facebook.  I am working on cleaning it up, but it is taking long time.  Lucky thing time is one thing I have plenty of right now.









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Rehab Abbey

All the testing in the hospital has determined that the muscle which helps my lungs breathe in and out is partially paralyzed.  The steroids are helping and my breathing has gotten a little easier, but I am still short of breath with exertion.  Since the problem has responded to the Solumedrol, right now the focus will be on building up my strength again.  During the week I will talk to the doctors about what we are going to do the next time this happens.

As usual, I have had gobs of amusing little episodes along the way.  I've illustrated my reactions as channeled by Maggie Smith as the Dowager Countess.

The respiratory therapist gives me my ventilation treatment and then decides he will do a little respiratory education.  “This treatment can really dry out your mouth.” he says.  I nod gravely to show I am a smart person and to express my profound comprehension.  “If that happens….”  I wait for his nugget of brilliance, “…drink a little water.”  Alrighty then.  Write it down.  Straight from the expert.  If your mouth feels dry, drink some water.

Then I am off to rehab.  Discharged from the acute hospital, I am transported in a wheelchair van by a very nice man to the rehab hospital.  By the time I get up to my room I am exhausted. I am brought a tray with dinner but I can barely eat it.  I just want to sleep.  A VERY PERKY nurse comes in to admit me.  She is firing questions at me a million miles an hour, so fast I can barely answer.  “Any skin breakdown?” she barks.  Before I can reply she whips down my drawers!!  She’s faster than my high school boyfriend.  Oh, why me Lord?!?

One of the aides at the rehab facility is an extremely tall, thin, striking looking African woman.  She is exactly what you would picture an African queen to look like.  Perfect posture and regal bearing.  Her voice is deep and melodious, although she does not speak often.  She does not giggle and laugh with the others, she has an innate elegance that I find fascinating.  One night she comes in to help me get into bed.  She swings my legs up and over effortlessly but then looks at the floor...  “This is powder spilled here.” She says quietly.  I am mortified and apologize profusely.  “Oh, no, it is fine, I am going to clean it up.”  She comes back and tells me how dangerous powder on a tile floor is.  It is very slippery.  I keep apologizing but she assures me she just wants to let me know to keep me safe.  “There is something even more dangerous than powder,” she says solemnly.  “Really?”  I am sure I have spilled this substance or will in the near future so I am hanging on her every word.  God knows I don’t want to be the one responsible for a freakish outbreak of slips and falls in Healthsouth.  “Yes.  It is…banana peels.”  I just stare at her.  I am thinking she is making a joke, but her fascinating face is perfectly straight.  “Banana peels are so dangerous.”  She acts out a little accident with her hands.  “You step on it with your foot and your foot will go flying out from underneath you.”  She has literally rendered me speechless.  “Wow.” I finally say.  Banana peels are dangerous.  Who knew?  She slides quietly away into the night, ever on the alert for banana peels.  Thank goodness.

 

The floor starts to quiet down and the lights are lowered.  My roommate is sound asleep.  I doze off, something that is usually really hard for me to do, and I am jerked back awake by a raucous burst of laughter.  Peering at the clock without my glasses, I can see it is in the neighborhood of 9 p.m.  I am irritated, but doze off again.  Am wakened once more by a shriek of laughter.  It is 9:45 p.m.  I doze again but wake up to a screech and more laughter.  It is 10:30 p.m.  Visiting hours are supposed to be over at 8.  Now I am pissed.  I ring the call bell and an adorable young nurse’s aide responds.  “Do you need something?” she whispers sweetly.  “That bunch over there is really disturbing me.” I reply.  She looks over at my 90-something roommate, who is out cold and silent in her dark side of the room.  “This bunch?” she asks, gesturing to no bunch what so ever.  I look at her for a second to see if she is pulling my leg.  But no, she appears to be completely serious.  “No, the bunch across the hall that is laughing and carrying on as we speak.”  “Oh,” she says with a kind smile, “they have been allowed to stay because it is a young person.”  Ahh.  A young person.  That must be the one I heard shriek “OWWWW, cut it out Mom it really fucking hurts I’m not kidding.”  Charming child.    It really sounds as though she needs the comfort and care of her mother. 

I had been told by the OT Director that I needed a lower bed.  After three days I still do not have one.  They don’t want me to go to the bathroom without an aide, but if I wait for someone to respond to the call bell, I won’t make it.  So I am told I will get a bedside commode.  Three days gone, I still do not have one.   I always check “tea” on my menu, but I usually get a cup of coffee and a tea bag.  The aide working this morning offers to get me a cup of hot water.  I am so grateful!!  I give her my ceramic cup (a gift from a loving, thoughtful friend) that I last used yesterday.  She returns ten minutes later with the dirty cup, with several rings of old tea, full of hot water.  It never occurred to me that I had to explain the cup, which had the remains of tea in it, needed to be washed.  I feel like crying.  How can I be upset when she was nice enough to get the hot water?  But why would she not wash out the cup?!?   

The family of my roommate, along with her aides, drives me crazy with their noise and thoughtlessness.  They have the television blasting constantly and have no consideration for any one besides themselves.  But she herself is a quiet little lady who minds her own business.  I think they drive her nuts too.  One the rare occasions she is alone, a physical therapist comes to pick her up for therapy.  “Hello Mary!!” he sings.  Her name is not Mary.  He adjusts her, gets her into her wheelchair, all the while calling her Mary.  Finally I say from my side of the curtain, “Her name is NOT Mary!”  A young Philippine man sticks his face around the curtain, studying his list with puzzlement.  “But she answered to Mary.”  He looks a little more and sees her on his list, her name slightly different from Mary.  I don’t say anything more.  I think not responding to her proper name was “Mary’s” little rebellion.

Yesterday afternoon, I called for my break through pain meds.  No one brings them.  I ring again after 45 minutes.  But by then it is time for my heavy duty med, so I decide to wait it out.  At ten I ask for the break through meds again.  At 10:30, I ask for them again.  At 11:10 I ask for them again.  At 11:20 the nurse brings me one tablet, half the dose, PINCHED BETWEEN HER BARE FINGERS.  That’s right.  No med cup, no identifying packaging, no gloves, just two fingers and a pill.  You know what?  I am simply too tired to fight with her.  While it is up there, it is not the absolutely worst thing she could do.  I do tell her that is just half the dose, I need the other pill.  And back she comes again with the bare pill in her bare hand.

Why do I have to be the cranky cow who complains?  Why can’t I be patient and kind?  This is why I hate people.  They make me feel bad about myself for hating them for being horrible.

Sigh.

On the plus side, I do like the staff a lot.  They appear concerned even when they don’t follow through right away.  The physical therapists seem really responsive and encouraging.  I am looking forward to working with them.  If I can get past all the other stuff.

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Desperately Seeking Breathing

Last week, while we were all already dealing with a terrifying hurricane and no power for days, I began experiencing dramatic shortness of breath after only taking a few steps.  I struggled and struggled, trying to convince myself it was just something I was imagining, even though I was taking deep, prolonged gasps for air with the least bit of exertion.   I was attempting to persuade myself that I was simply deconditioned and if I pushed myself just a little bit harder I would end up with Olympic level lungs.   Finally on Sunday, Mary Kate announced she couldn’t watch anymore and she called 911. 

I actually conceded to ride in an ambulance, because I knew I wouldn’t have made even the few yards to the car.   And I agreed to go because all through that whole brutal week, one particular exchange had loomed in my memory.

Two weeks before Christmas in 1993, my husband Dennis offhandedly mentioned his past bout of pleurisy was bothering him.  What do you say to someone who you have been married to for 17 years and who is notorious for not taking care of himself?  “What are you telling me for?  Call the doctor.”  And he replied, “I will, right after the holidays.”  Well, he never made it to the holidays.  He died of a massive heart attack on December 20.  He had no idea he was mortally ill.  He never would have left his kids behind if he had had any choice in the matter.  These are the things that went through the head of this particular notorious patient, over and over again, as I struggled to breathe.

So off I went, sirens and all.  I was too scared to be mortified.  Well, I was too scared to be really mortified.  I truly was more relieved than anything.

I suppose because I grew up with a world class hypochondriac who I never believed a word from, I always assume that I will not be taken seriously.  And, as a matter of fact, I often am not.  Part of it is, yes, due to managed care and the time constraints that limit practitioner revenue.  But I think it is far more because healthcare providers are jaded, bored and do not listen.  (My PCP is an incredible exception, but more about him another time).

I lay on the gurney in the ER, wearily waiting for the first in a series of MD’s who would ask me the same questions, few of which would be apropos and who would not listen to the answers anyway.  Then curtain discreetly opened enough for a young voice to ask “Mrs. Cooper?” And he leaned his face in just a crack, with a raised eyebrow.  He was the most adorable thing I had seen in a long time and I nearly told him that.  Way to start an assessment by being defined as a dirty old lady.

He was cute, as I said, but mostly he just exuded niceness.  He was polite and sensitive but not smarmy.  He listened to my responses and then repeated them back to me in different words!!  Agghhh!! He got it!  When he came back with my lab results, which indicated I was in dire need of a blood transfusion, he looked so concerned I thought he was going to cry.

I was going to be admitted, so I was taken to a new unit the hospital had just opened to facilitate patient back-up.  Because oversight of this department was my job at another hospital, I knew what they were trying to do, but they were failing miserably.  Beds in our local hospitals are like gold.  When you have a high population of elderly and poor, as you do at the Jersey Shore, ER’s get backed up very, very quickly.  A hospital only has so many beds.  Most of them are dedicated, such as orthopedic, surgical, or mother/baby.  You can only place that kind of patient in that bed.  If your patient has a co-morbidity, such as a communicable disease or infection, they have to be isolated or put in a room with a patient who has the exact same diagnosis AND is the same gender.  So your bed possibility is reduced even further.  It is a constant juggling game.  Sometimes, the Gods smile and you can fit everyone together like a Chinese puzzle.  Other times, it is a nightmare of vast proportions with 20 seriously ill 80-plus year-olds languishing in the halls of the ER.  Within hours you have family members in your office, who you completely sympathize with, screaming at you to get their grandmother out of the ER corridor where she has been for 20 or more hours.  But you literally have nowhere to put them.

So up pops the Transition Unit idea (that is what we called it at my facility, it has other names, such as the Discharge Unit, which confuses the hell out of everyone because the patient is only being discharged from the ER to the hospital).  Anyway, the thought process is to get the patient completely assessed and prepped and tied up with a little bow so they simply have to be moved into the proper bed when it becomes available. The patient gets to wait in a comfortable bed in a nice little curtained cubicle.  Sounds like a great idea, doesn’t it?

Only it doesn’t work, except as a sort of a highway rest stop, without the tasteful souvenirs .  The patient continues to suffer in limbo.   Patients are not discharged from the main hospital any faster, and that is where the backlog starts.  So patients aren’t stuck in the hallways anymore, but they do get stuck in these way stations.  They are uncomfortable and there is no privacy.  When you are already sick, you feel simply miserable.  Patience frays, family members lose their tempers.  Frequently with each other.

I ended up in the Discharge Unit for about 24 hours.  Every conversation with every specialist who came to talk to me was overheard by the entire place.  The space assigned to each patient, divided by curtains, is approximately 8’ by 10’.  And I am being generous.  The guy in the cubicle next to me snored all night long, interspersed with shouting out obscenities.  Charming.   The little old lady in the cubicle on the other side of me was enduring the pain and confusion of dementia and she whimpered the whole time.  And periodically snorted violently.   I spent the night in contemplation and prayer.  I contemplated holding pillows over their faces and prayed for forgiveness for wanting to kill them.

Two members from entirely different families came to actual physical blows as long simmering issues exploded over their sick, elderly relatives.  Mom always did like you best.

So by the time I was sprung, everyone else had already been moved along with the indelible memory of when my last menstrual period was, if I was having difficulty urinating and if I was sexually active, among other delightful tidbits.  For, additionally, the subtext in every single solitary consult was Fat.  Did you know you were Fat?  How long have you been Fat?  Did you know being Fat can make you sick?  What are you doing to stop being Fat?  Fat, fat, fatty fat fatty.  Fat.  I am ready to stick my head in the oven, but I know if I ask where the kitchen is they will think it is because I am Fat.  I turn on the television power for the Internet and notice for the first time the screen is personalized.  Name: Marie Cooper, Room Number: 6007, Overweight.  WHAAAT?!?!  It’s even on the effing TV?!?!  Then I see this is the weather: OverCAST.  Oh. 

For a horrible minute, I thought even the Internet was on my Fat Case.

 

 

On the plus side, my room is spacious and bright.  I am getting great care from kind people (for the most part).  Mary Kate brings me flowers, and better still, brings me Madailein, who charms everyone by saying “Hi Da Da!” when my male tech walks in the door.  He did turn a trifle pale.  My dear friend Kathy from high school comes by.  Deacon Gail brings me Communion.  Christine comes by but I am at a test.  She comes the next day in a blizzard!!  I am surrounded by love, including virtually on Facebook with dozens of kind and encouraging thoughts.

I go for test after test, but I am still so short of breath it is almost incapacitating.  While talking to the pulmonologist, I realized that the litany of symptoms is a mirror of the transverse myelitis I had eight years ago. I suggest that to her and she happily agrees it is a possibility.  I started the IV steroids yesterday, too soon for any improvement, but fingers crossed.  On the other hand, I am feeling overwhelmed that the MS is causing such significant and crippling symptoms.  The prognosis will not be a good one.  People who have lung involvement end up on respirators.  I am so scared.

One of the people I encounter here is a jolly woman who brings me my dinner tray.  I am very down about the whole Fat thing and I say so.  She puts her hands on her hips indignantly.  “Honey, you are a lovely looking woman!  Beauty comes from the inside.  No one has a right to make you feel bad about yourself and you need to tell them that.  You need to say ‘That makes me feel bad. Don’t talk to me like that!”  I don’t care who it is!”  She shares some of the incredibly overwhelming circumstances she has struggled with and I am so touched by the generosity of her spirit.  I feel better simply from being exposed to her spontaneous kindheartedness.  It is such a gift to have someone like this placed in your path when you most need it.

And then there was the blizzard!!  A week after the Jersey Shore was devastated by Hurricane Sandy, we are hit with a pre-season blizzard.  People who have just gotten their power back after six days lose it again.  No one is prepared for eight inches of snow.

The view from my hospital room on Wednesday.  I know it says Thursday, but I am not operating on all four burners right now.   So that is a big FAT mistake, ok?!?

And the view this morning approximately 5:30:

Looks like that pesky demon may still be there.

Continuing to pray for strength and grace and praying the same for all of you, my wonderful virtual true friends.

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Hang on to your hats...

I'm on The Juice.




I have been dragging for months and feeling like death on toast.

(Like Death on Toast, a Play after Pirandello in One Act:

Marie: Waiter, I would like some toast please, with marmalade.
Waiter: I’m sorry madam, we’re all out of marmalade, we only have Death.
Marie: But I don’t care for Death on Toast.
Waiter: I’m sorry madam.
Marie: I really, really don’t like it.
Waiter: I am very sorry madam, it’s all we have.
Marie: (pouting) I hate Death on Toast.
Waiter: If I may be so bold madam, perhaps if you had not done something terribly wrong in a previous life, we would not be out of marmalade.
Marie: It is all my fault, isn’t it?
Waiter: I’m sorry madam, yes, it is.
Marie: Waiter, I would like some toast please, with Death.

The End )

My broken shoulder has been agony despite three surgeries to try to get rid of the pain. When I tell you I was ready to tell my ortho to just amputate, I am not kidding.

Last week Chris, my PT extraordinaire, had an epiphany and said "maybe your arm pain is referred pain from your neck?".

And I innocently said, well, the Transverse Myelitis caused a large lesion on my cervical spine.

Bingo.

Chris and I looked at each other. It was time for the steroids I hate so much and had put off for so long.

I called my neurologist and told his secretary I thought I could use a course of solumedrol. Dr.H is so awesome. He totally respects my assessments. No questions asked, it was ordered.

At any rate, the visiting nurse came Wednesday and started my IV. I did the first infusion. And within hours I started to feel unbelievably better. The sensation of having been pummeled all over began to fade. My legs and knees, which were so weak and painful that yesterday I was using a walker, grew stronger and steadier as the day progressed. But the best: my arm and shoulder pain, which has been unceasing for almost two solid years, through three surgeries, has gradually eased until I am absolutely comfortable tonight.

Everybody has different experiences with IV steroids. Sometimes the side effects are simply intolerable. They have the potential to do incredible cumulative damage to your body. I have found that they aren’t always effective. Last time it wasn't at all. So I am very careful about choosing it as an option. This is my fifth course in five years, but the last one was a year and a half ago. I figured that was a long enough break. I was desperate this time.

When I went to see Dr. Wonderful for a surgery follow up on Tuesday, I was trying so hard through the whole visit not to cry. My arm is completely healed from an orthopedic standpoint, he told me. There is no reason for the pain, bone wise. And in my head I am thinking “omg omg omg what am I going to do?!?!” Fortunately, he wasn’t throwing up his hands. He is wonderful. He carefully read the PT report about the neck lesion and thought the theory had a lot of credibility. “That’s where all the nerve bundles originate.” He referred me to a pain management specialist. He said “We’ll treat this as a team.” Dr. H.’s secretary is faxing over as much info about the spinal cord damage to the pain guy as she has. What more can I ask for?

While Dr. Wonderful was writing prescriptions, I had nothing to look at but either him or the floor. Of course, given that I have the maturity of a ten year old, through blinking away my tears, it certainly doesn’t hurt that he is cute as a button and dresses impeccably. I was mesmerized by his gorgeous socks and idly wondered if he threw them out after each wearing. Because nothing that pristine could come out of the washing machine. Were they silk? Did his wife wash them by hand? Good thing he wrote fast, who knows where else my mind could have wandered.

By the way, now that you know about his socks, I have permission to use his real name. For the past almost two years I received the most incredibly optimistic, compassionate and skilled care from Dr. Brian Torpey of Tinton Falls, NJ. His real name is Dr. Torpey, but he will always be Dr. Wonderful to me.

So after two days of Solumedrol I have slept a total of five hours. By tomorrow I will be a perpetual motion machine. I will not be able to stop talking, or writing, as you can see already by the length of this post. I am walking without a cane. Nothing hurts. Yesterday I got washed, dressed, made up and was out the door with a cup of tea to Physical Therapy in twenty minutes flat. On Tuesday it took me almost twenty minutes just to wash my hair in the shower.

Unfortunately, next week I could crash and burn. But for these few days I am giddy with the sensation of normalcy.

Getting Better

I am so grateful for all the kind words of comfort and encouragement that people have posted here. Boy, it has really been a tough week!

I am feeling better every day, but not back to what passes as normal for me yet. I had thought of going to the gym today, but after doing housework this morning for an hour I felt as though I had been beaten with a club. So I gave it a pass.

The steroids are doing their job quite nicely and I am totally wired, sleepless for three nights and already put on three pounds. I am very ambitious but don’t have the strength to follow through on anything. So I am spending most of my time trying to do small projects – sorting through books, organizing my den and papers, throwing out ruthlessly. Ruthlessly for me is about 25% of what it would be for anyone else. :) I actually have gotten a lot accomplished.

Keeping busy helps with missing Corrie.

My brother and sister-in-law sent me a gentle, poignant essay about losing a pet. It ends with this wonderful advice.

Remember, if a dog was the teacher you would learn things like:

* When loved ones come home, always run to greet them.
* Never pass up the opportunity to go for a joyride.
* Allow the experience of fresh air and the wind in your face to be pure ecstasy.
* Take naps.
* Stretch before rising.
* Run, romp, and play daily.
* Thrive on attention and let people touch you.
* Avoid biting when a simple growl will do.
* On warm days, stop to lie on your back on the grass.
* On hot days, drink lots of water and lie under a shady tree.
* When you're happy, dance around and wag your entire body.
* Delight in the simple joy of a long walk.
* Eat with gusto and enthusiasm. Stop when you have had enough.
* When someone is having a bad day, be silent, sit close by and nuzzle them gently.
* Be loyal. Never pretend to be something you're not.
* If what you want lies buried, dig until you find it.

And my brother added this lovely comment, “She just moved from one dog heaven to another.” How sweet is that?!?

Thanks Ed and Mary! Thanks everyone!

Setback

Once a month, I go to an infusion center and receive a medicine intravenously that helps slow the progression of my MS. It is called Tysabri and so far has been working pretty well, as I haven’t had any relapses in almost a year.

One of the downsides, though, is that it lowers my immune system. And because of that, this week I came down with shingles. This is a very painful viral infection that is particularly concerning in a person who is immunosuppressed – someone like me.

So I am now on a cocktail of antiviral medication, high doses of neurontin and prednisone. My neurologist is calling this “aggressive” treatment. It’s a little scary to feel this sick.

The medicines I am on all cause weight gain. My doctor was sympathetic when I mentioned this, but he was very grave about how serious this illness can be for me.

On the plus side, I have no appetite.

While I am upset that this will affect my weight loss, I am trying to remember the fact that the purpose of this blog is to focus on taking care of ourselves. So I am going to do just that, take my medicine, rest and ignore the scale for the time being.