Scenes from the Immune System Wars

I am hooked up to my quadruped monster at the moment. That is, I am infusing my subq igg.  I will post about it in a more complete way at a later time.  I even plan to post a link to a video of myself doing the infusion for YouTube.  I hope it might help anyone learning to do their own infusions.  Today I started the infusion relatively late in the day and I tried to hurry. Both of those things were a bad idea.  I screwed up all over the place.  I dripped medicine everywhere and did not have a second syringe prepared when I needed it.  Dumb.

But now that I am hooked up there is nothing I can do but sit here.

Today is not behaving like I want it to.  No, I guess that is untrue.  My body is not behaving.  The day is fine.  It is rather beautiful outside.  I went out with my friend to see her new house under construction. We had lunch out and talked.  I enjoy spending time with her and her house looks like it will be awesome.

But I have been miserable all day.

If you had told me three years ago that I could function semi normally this sick, I would never believe you.  But, now I know there is no damned choice.  No one can really help me.  I have sores all in my mouth and throat and down my windpipe.  I cannot swallow without horrid pain.  My side aches horribly.  I feel run down and shaky. I have fever.  But, I have to push on.

I will be at the Mayo next week and I have to hope that they can help me.  I am out of other options.

I don’t want to go back to any ER’s for help.  It is too difficult.  My family is too shell shocked from my latest round of illnesses.  I need to ‘fake normal’ as best I can until I fly out of here.

But right now, this moment, I want to give up. I want oblivion.

And I don’t think there is any shame in admitting it.

I just can’t have it.

It doesn’t exist.

 

Lumbar Puncture

Spinal Tap

September, 2012

Spinal Tap was/is the name of a rock band.  That’s pretty much all I knew about it other than the standard pregnancy stuff.  When you have babies you learn all about spinal tap in the form of epidurals.  You learn to ask for one.

When my daughter was born, I did not get one and that was a MISTAKE.  I was in active labor for 13 hours and did not have any pain relief at all for 11 hours.  It was bad.  When I had my son, five years later, I made it clear that I wanted the epidural from my first visit to the ob/gyn.  Hell, I would have been happy to have one that lasted nine months.  I remember being a little scared when the anesthesiologist came in for the procedure. But, at that point, I didn’t really care.  I just wanted the pain to get better.

No.  What happened to me last week was nothing like an epidural.  It was a lumbar puncture to check for meningitis. The IV medication I take has a slight danger of causing meningitis and I didn’t think I had it but I wanted to err on the side of caution so I went to E fucking R on Friday night.  I had a headache, neck ache, upset stomach and fever.  It kept getting worse and the headache had really been with me all week since my last infusion.  I was also itching all over.

They ran the standard blood; urine and CT scans and things looked pretty good. The doctor came in and said that because I am immune compromised, the best way to check me for sure was to do a lumbar puncture.  It sounded scary and the thought of random infection really made me pause. But, again, I wanted to err on the side of caution.  So, once again, I said yes.  I did not even know how it was done.

The doctor came in and the nurse rolled me onto my side.  They swabbed my back with betadine solution and had me roll into a ball.  Then the doctor ‘numbed’ me in one spot. It hurt but I thought that after that I would not feel the needles. There was a feeling of pressure. The poking and pressure continued.  It went on and on. The nurse excused himself.  He looked pale. I finally asked the doctor when he was going to stop and he answered me, “I cannot draw any fluid from your spine. This is very unusual.”

“Great.” I said. “This is just another freaky thing on my freaky thing list.”

“That must frustrate you.” The doctor had obviously taken psych 101.

So after all was said and done he offered me an alternative.  He would admit me and then they could do a second lumbar puncture with fluoroscopy and it would be performed by a radiologist.  Due to being already weird, this might not be a bad idea, he said.  On the other hand, he did not think I had meningitis, so I could probably go home.

I decided to go home.

I didn’t want to ruin my kid’s birthday party. My husband was really stressed out.  I could tell he was melting.  I had to just deal with it. Really, that is just the way it is most of the time.  I have learned to ‘just deal with it.’

If I get sick enough, I will stop.  Otherwise, I had best just keep going.  It upsets those around me if I stop and look sick. I just don’t get that option.

So, today, I have a lot of back and leg pain.  Did the doctor hurt me?  I don’t know.  Did he infect me?  Who knows?  I just need to rumble on until I can rumble no more.  That’s all I know.

The end.

I am my own Olympic event.

 

Yesterday was not good.  In fact, it sucked.  My joints burned like fire and I couldn’t really move without the fire spreading.  I was trying to be still with the pain and not let it take me out so I decided I would play Olympics with myself:

Announcer:

“This is Katie Kelfer on the swollen and achy joints high beam.  She is positioning herself   for take-off from the couch.  You can see the precision in her execution as her ass leaves the cushion.  And, watch… YES!  There it is.  She is up. There was a balance check when she hit the floor. That will cost half a point

What will her next move be?  Is it? No… it can’t be…

Yes!  She is going to bathe.  Wow.  No.  I can’t believe it. She’s shaving.  What grace. What finesse…

How does she do it?

Ok now, she is clothed and headed back for the couch.  She is through the prelims and we are wondering if she will get to round two.  Certainly with a performance like that there is definitely hope.  Wait, wait, here she comes now.  Let me interview her,

What did it feel like to move all the way from the couch downstairs to the upstairs bath?

“Well, Larry, I tell ya, it felt like crap.  I thought I could power through and maybe the pain would get better but you know what?  I was wrong.  I am utterly fucked today.  I don’t want to take the hardcore pain meds so I am going to keep moving and see if that helps.”

“You heard her.  Keep moving.  Will it work?  We will see when we are back for round two in the semifinals.”

“Hi, I am Larry Loser here at Taylor Zoo Stadium announcing the women’s connective tissue disease races.  Earlier we watched first time Olympian Katie Kelfer qualify for the semi-finals by moving from the couch and upstairs-through a bath and dressing experience and back to the couch.  There were a few balance issues but her score remains the highest in the category.

In the semi-final round, we had our cameras posted on the snail races to drum up audience approval.  Now, we are back for the connective tissue disease finals.

It’s bed time, folks.  Who can get to sleep first, with the least amount of narcotics?

Katie Kelfer is down by half a point already for whining to her spouse.

Her spouse is asleep and Katie is trying to accomplish the same and achieve the gold.  But it isn’t her night. The pain has turned into hot lava and is pouring, like fire, through her body.  She relents and goes for a small dose of the diluadid.

She reads and tries to focus elsewhere.

But no, it is midnight and relief is too far away.

At last, Kelfer is disqualified from the event.  She takes the second dilaudid  dose at midnight.  Sleep, however, still proves elusive.

She will not be medaling in the event tonight.”

Triggers:

I am not going to discuss Roy Rogers’ horse here.

Triggers are things that can set off a day or a week or more of shit health.  That seems obvious enough. A trigger sets off a flare.  Knowing what your triggers are can save you from having a flare.  Well, that seems pretty simple.  It isn’t.

How in the fuck are you supposed to know that staying out past 8:00 on a Saturday night having fun with your family is too much?  You just don’t know.

Some things are obvious.  Sleep is a must.  Hydration is a biggee.  Food is also important.

But lately I have been wondering about the triggers that start us down the path of disease itself.  I mean, what if certain stressors had not appeared in my life?  Would I have the chronic illnesses I have today?  I can identify pretty clearly the times in my life when my health has taken a bit nosedive.  Each of those times had been linked to a period of incredible emotional stress.

For me, the mind/body connection is very clear.  But, that doesn’t mean I have any sort of handle on it at all.  I don’t.  In fact, I have absolutely no control over it.

That is so infuriating that I think it almost makes it worse.

When I was 29, we moved across the country, my father died, I got pregnant and I became an ordained pastor of a difficult parish.  My husband had a job with a huge commute.  Our lives were very stressful and we lived in a parsonage that was from the 1880s and filled with mold.

I had the baby and then got very sick.  I had infection after infection.  I sometimes wonder if that was the trigger for my   CVID.  It is almost like it lay dormant before that.  I mean, I had a lot of illness but after that period, it went nuts.

A similar scenario happened when I was diagnosed with mixed connective tissue disease.  I was in my early forties and on IVIG.  I was teaching college part time and commuting a long way.  I had two kids in school and my mother was dying of cancer 90 miles away.  I was driving to see her as often as possible and we were caring for my mother in law, who was also ill, closer to home.  My husband’s work schedule was inflexible and we were simply overstretched.

I fell apart as soon as mom died.

My body could not sustain the pace.

Is my body weaker than it ‘should’ be?  Does it do any good to be angry about it?

Now that I am no longer working and both my mother and mother in law have passed away is life easier?  I don’t know.  It is lonelier.

I am learning to live a day at a time.  I am writing.  That is the one thing I know how to do.

I am going to find my way and fight this good fight one battle at a time.  I hope to learn as I go and maybe show the way to others as they fight.  There are but two choices here: fight or give up.  Giving up is not an option.

There is too much at stake.  I tried being stoned and it has its attractions but I have too many people and creatures depending on me.  I have to keep moving.

Come along with me for the ride.  Maybe we can learn to laugh as we fall on our asses together and slowly get back up and move on.

Furry People

Furry people help me live in a better place than the one I inhabit alone.

Furry people are dogs and cats and (now my son has a bird) and I consider them my children.  I know that is cracked.  I don’t care.  I try not to tell people outside my family unit how I feel about my animals. After all, I don’t want to be locked up. The animals give unconditional love.  They are here when no one else is home.  They are warm and soft and when I am at my lowest, they know.  Usually, Penny, my smallest dog, gets in bed with me and stays the whole day, practicing ‘heel.’

The animals are our family hobby.  We gather around them to watch them play and to play with them.  As a family, we talk about them and enjoy taking the three dogs out to parks or swimming holes. There is something completely engaging about watching a dog frolic in the water: or watching the kitten chase his tail.

Often, when I cry, I hug one of them.  They don’t understand, but they know I am in pain.  I have noticed that it causes the dogs to pant.  My pain makes them sweat.  I wonder why that is.  I think the secret of the furries is just that: they care and their capacity to care is endless.  They never judge.  They don’t ask if the pain is real or if I am going to ever get better.  They don’t care if I am contagious.  It doesn’t matter if I haven’t brushed my teeth.  The animals know what I need, instinctively.  If only they could accompany me on those difficult trips to ER or the hospital stays that suck so badly.  I have often wished I could sneak Penny dog into my infusion treatment.

I know I sound like a real baby talking about all of this but I think there is a deeper level here. Human beings are too complicated.  We worry about ourselves: “Am I going to get sick too if I hang out with Katie?”  “Is Katie going to die?” “I can’t help her and I am too uncomfortable to stay here.” Etc. etc.   The animals don’t have all these thoughts and dilemmas.  They just know they are needed.  They only have one job description: to love and cuddle unconditionally.

They do that well and sometimes, that is all  the sick person needs.

Thanks be to God for the Furry Children.

Well, I have a date with a GI doc in Jacksonville.  I was able to move up the date significantly by calling the nice appointments lady back just once.  It seems things are taking shape for this trip.

In addition, my sweet, sweet cousin, is taking me.  I can’t believe it.  I have made both of the previous trips alone.  It totally sucked but I had to do it.  My cousin is more like a sister to me and as we have aged we have both realized, I think, that we don’t have a lifetime left to ‘see each other later.’

Anyway, she is going.  I cannot even begin to explain the peace of mind this gives me. I think we are going to drive from my cousin’s house near Beaumont, TX and I will ride along.  I already have my room reserved at Mayo Inn.  It was so SAD.  Georgia, at the front desk at Mayo Inn, recognized me:( ACK.

My cousin can go home when she needs to and I can fly back with a one way ticket.

Now begins the self talk that drives me nuts, “do I really, really need to do this? ”  I keep wondering if I just take more steroids or go back to San Antonio or push harder on my doctors here, maybe I can get it solved in Texas.

I actually got a call back from the surgeon in San Antonio yesterday.  The remembered who I was!  They wanted to schedule me for a biopsy.  This is after I called them every day for over a week and they couldn’t find a file indicating I was ever their patient.

But, oh, I hate to spend all this money and time in Florida.  I feel like it had better be worth it.

I am familiar with all the stages of this process now: A. Sick and no diagnosis.  B.  Talking to specialist after specialist here in Austin. C. Hospital. D. Growing awareness that I may need to go back to Mayo.  E. Decision to go.  F. Appointment wrangling and details. G. Self doubt and guilt.

Rinse, repeat.

I am too tired to make good decisions right now.  And what is really bugging me, besides pain?

I’m gaining weight.

I know, that’s deep.  Really deep.  I look like the  Goodyear blimp.

Do I really have to go to Mayo again?

Yes. Yes I do.

 

This is a post I am putting directly onto this site. It is not really an essay or blog post.  I just want to share with any potential readers a bit about Mayo Jacksonville and the fact that I am going back for my third visit there in three years.

Lately, (for the last year) my medical mystery du jour has been upper right quadrant pain.  This has    blossomed and grown and now become unmanageable and intense.  I have tried numerous specialists and tests here in Texas hoping to get the issue solved.  At this point, no one in the Austin/San Antonio area can seem to help me and my situation seems to grow worse daily.  So, I have decided call on the doctors at Mayo in Jacksonville.  This is where my “real” doctors are.

Mayo is the only place I know where they put together the whole picture and do not see a patient as little slices.  At Mayo they work up your whole body and consult between specialties to come up with a differential diagnosis.  Because I have several over lapping immune diseases which complicate any kind of diagnostic process, it seems I must have this type of diagnostic approach.  It is frustrating in the extreme.

I am grateful that I have been to the Mayo twice and know what to expect and how to deal with everything but I am also very frustrated that medicine is practiced in such a half assed manner elsewhere.  Without communication and collaboration, differential diagnosis (the process of putting together all the pieces in the puzzle) doesn’t work!

So, here I go again.  I cannot afford to do it and yet I cannot afford to not do it.  My appointment is a month away and it is way too far in the future.  I will call each and every day and ask for a cancellation.  That is what the nice lady in Florida said to do…

I hope she doesn’t get tired of hearing from me.

🙂

Chronic illness is just what it says it is: Chronic.  For those of us who suffer with immune related illnesses we are never sure if tomorrow or the next day will come and let us go relatively unscathed or: Will I have a flare of my connective tissue disease?

Will my Igg infusions make me sick?   Will I get the flu and be on of those “statistical” people that ends up in the hospital?

Do I have a new symptom? Is it real?  Is it connected? Am I going bonkers??

This is our day, our life.

In order to go forward and not be stuck in the quagmire that is our health, we have to move ahead. On this website and in my book, I will point to ways to keep you moving ahead:

1. Get educated about your illness.
2. Become your own best advocate.
3. Learn how to find the best doctors in your area and be vocal about your needs.
4. Find support from others walking the same, lonely path.
5. Learn ways to cope with family and friends who simply don’t understand where you are coming from.
6. Let to fight, fight fight and live, live, live.

This is hard to write about.  Mainly it is hard to write about because I am so damned tired. Typing into the keyboard is making my shoulders hurt and my eyes are burning like hot coals from inside my head.

Fatigue is a quiet enemy.  It sneaks up and wraps itself around you like a boa constrictor.  At first you think you can handle it.  Or, you think maybe you can get it to just drop off.

Or, maybe you can learn to live with it just sort of attached to you at all times but not squeezing you to death.  Like you and the boa constrictor called fatigue can come to a sort of agreement,

“I won’t make a big fuss about the fact you are here if you won’t squeeze me.”

“Yeah.  Sure.  I won’t squeeze. Lean into me; I am more of a brace than a handicap.  I can help you sleep and relax. I’m a good excuse to get out of things you don’t want to do anyway.  Trust me.  I am your friend.”

But inevitably the coils begin to tighten.  It is imperceptible at first.

“Hey. Snake. Stop it.”

“Who? Me?  I’m not doing anything.  You just over did it yesterday.  This is your fault. Not mine.”

Then the soreness and the pain start to set in.  The joints begin to burn and the mind seems sort of sluggish, as though the oxygen were cut off somehow.  Fatigue is more than just being sleepy.  It is like a systemic shut down.  Like someone is dimming the lights and squeezing the life out of you.

“S.N.A.K.E.  You motherfucker: you are killing me. This was your plan all along.  I really wonder what you plan to do with my carcass.  I don’t think you can swallow my fat ass whole! Besides, I am not going to be your kill for the day.I will do whatever it takes to beat you back:  Sleep, meds, infusions, weird foods,Shots every day, no more gluten, never drink alcohol, blah, blah, blah.

But, Snake, you will NOT eat me.

Let go you scaly bastard. I know you will be back for another round but trust me, I will win.

I am not scared of you.  I’m just a little sleepy.

I don’t know what the new normal is. Every time I think I have it ‘under control’ I am wrong.
Lately, I am doing a bit better. I feel like am learning to manage my disease (s) and not let them manage me. Yet still, I end up in the ER or flat on my back needing to sleep through a couple of days, too weak to bathe or get a drink. This feels pretty unacceptable.

The last two weeks were really exciting. My dear friend, Takako, was here from Tokyo. I had not seen her in four years. I planned a five day trip to the beach for the whole family and some other activities. There were some down days planned in and I got my infusion on time. I even took the day after infusion off and rested the whole day at home. I stayed hydrated, (I thought) and slept ten to twelve hours a night. This is sort of a basic formula for someone like me.

But still, the whole thing ended in one mini crash and a big crash. Our last night at the beach I was itching all over and so nauseated that I could not sleep; I knew something was really wrong but tried like hell to just tough it out.

At 1:00 a.m. I knew I had to do something about it because I had a grinding migraine that was just getting worse. I called around the Island (as quietly as I could) to see if there was an Urgent Care center. Nope. The closest thing was the ER at the little town across the ferry. I had to wake my husband and have him take me. He was worried he would not be “up” to drive home the next day so he grudgingly got up and drove me over but slept in the car the entire time I was in there.
It didn’t occur to him that he had already had many more hours sleep than I would ever get. Oh well.
So, I waited and they were pretty nice. I got fluids and Reglan and fell asleep in there. Finally they woke me and told me to call someone to pick me up. I had managed to get dehydrated on the beach even though I had been drinking a lot. Apparently I cannot drink sodas at all. I have to go with straight water and sports drinks… lesson learned.

The next day, my girlfriend drove us back to Austin and my husband slept in the car.
On Monday, I infused. It was a long and tough day and they gave me more meds than usual. I thought I was fine, though.

By Thursday, I was peeing burnt orange and having flank pain. It felt like, WTF?
My sweet friend insisted I go in to ER..

I was fine, just flared and exhausted. I slept all day Friday and am spending the weekend housebound. My husband is doing housework, driving the kids about and trying to understand why I can’t go anywhere. It’s hard for him.
I don’t understand either.
I thought I did all the right things. I am scared now. If this is the new normal, what does that mean? Can I make it to Europe next summer?
Will I ever be myself again?
IS THIS ALL THERE IS?
I have been trying to take all this one day at a time but I am feeling a sense of perspective here that I do not like at all.
I feel like I am staring something in the face that I cannot bluff away. I can talk/write tough but if this is how I am going to be, can I accept it?
Do I have a choice?
Can I somehow rebuild?
Can I pace myself in a more intelligent manner? Can I THINK my way through a set of diseases that don’t behave according to logic?
I guess that is the crux of the matter. There is no logic here and I desperately want some. I am a creative thinker and a flexible one, up to a point. That point has now been crossed. I want a formula for how to live with this shit: If I do A, B and C, I should get a specific result; but I don’t.
I don’t like that.
I don’t like it at all.
I guess I’ll keep reading, keep fighting; keep trying to do better. That is all I know to do.