Sometimes I forget that learning to live with a chronic illness is an endless grieving process.  I tend to get very caught up in maintaining a positive attitude, and fail to let myself feel the negative feelings that naturally come with all the change and loss I’ve experienced while dealing with a chronic illness.

This past year has been a difficult one for me.  There have been lots of changes and losses.  I endured two long hospitalizations – one for six weeks and one for eight weeks with one week intubated in the ICU.  I’ve been through multiple changes in caregivers.  I’ve been dealing with my parent’s separation and impending divorce.  I even made a major positive life change when I converted from being Jewish to the Church of Jesus Christ of Latter Day Saints,  and though this has brought me so much happiness, it has wrought some negative side effects – significantly straining some relationships with family and friends.

Through all this I think I’ve maintained a remarkably positive attitude.  I’ve become an expert at coping.  I’ve channeled my energy into other things I still can do like scrapbooking, Alternate Reality Game design, web and graphic design, and novel writing.  This has helped me keep my spirits up as I’ve created an identity for myself beyond being a “sick girl”.

This is all well and good.  In fact it’s great!  I love being happy.  I have no desire to wallow in self pity.  But that doesn’t mean that the negative feelings go away.  But where do they go?

I’ve come to realize recently that I’ve been stuffing them away.  I still feel deep sadness, mourning, and loss.  I still have intense fear for my immediate safety and my future.  But I keep that all hidden deep beneath my ever positive outlook.  Why?  Because feeling them hurts and I’m afraid of what they’ll do to me and my relationships if I let myself feel them.

Still they come out in other ways.  I eat too much and don’t sleep enough.  My obsessive compulsive disorder flares up.

So I recently came to the conclusion that I needed a safe place to let myself feel all these negative emotions once and a while.  I decided it was time to see a psychologist – one that specializes in disability and chronic health problems.

I’ve only had one session so far, but that one session made me realize just how much I’ve bottled it all up and just how much I need to let it all out.  Because living with a chronic illness is an endless grieving process, and sometimes it’s important to let myself feel the full impact of that.

When you are living with multiple chronic illnesses things can quickly spiral out of control.  Cruising along getting through the day to day and then suddenly you are veering off the road and into the dark unknown.

What started as a tiny pimple turned into a nightmare.  I got a cellulitis infection on my neck which triggered a chain of events leading to a devastating new diagnosis.  How did I get here alone in the dark and how do I get back on the road?

When the tiny “pimple” grew to half my neck in size in 72 hours time, my doctor told me he’d meet me in the ER.  When you are immunocompromized (as I am), you don’t take risks with infections.  I decided to have my caregiver Nathalie drive me an hour to the big city hospital where all my specialists are on the off chance they decided to admit me.  This turned out to be a wise move on my part as I they almost immediately decided to admit me for IV antibiotics.

But even as the infection started to clear over the next few days of IV vancomyocin, things started to go downhill.  A familiar yet mysterious pattern emerged reminiscent of my hospitalization in May.

I developed both blurry and double vision.  Then I started having severe weakness borderline on paralysis in my left leg.  Then my right leg.  That is where things had stopped in the past and in May, but this time the paralysis continued to ascend.  I could no longer control my bladder and had to be catheterized.  Then I began having trouble moving my arms.  Finally my breathing muscles were effected.

My doctors quickly moved me to the ICU.  Effectively paralyzed, I was intubated and put on a ventilator.  I received a high dose pulse of steroids to help calm down my immune system which was attacking my nerves, preventing me from breathing on my own.

After a week of having  a machine breathe for me.  I was able to breathe on my own again and was moved out of the ICU to a monitored floor.  But the mystery remained.  What had caused all this?

Well the answer came in the form of another infection – a kidney infection.  With the new infection the blurry/double vision and paralysis got worse again rather rapidly.  Turns out the antibiotic being used to treat the infection can make symptoms worse for people with a certain disease which matched many of  the symptoms I have.

So my neurologist decided to test it by giving me a medication called Mestinon which specifically helps weakness in people with this disease.  Sure enough within  a very short time of taking the medication I could move my legs again!  And when the medication wears off I go back to near paralysis.

And so last night my doctor officially diagnosed me with Myasthenia Gravis.  And here I am veared off the side of the road with this scary new diagnosis.  And unfortuantely this new diagnosis doesn’t replace any of my other diagnosises.  I still have Sjogren’s Syndrome, Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto’s Thyroidis, Fibromyalgia, and so on and so forth.  And I still have an undiagnosed neurological component – the autoimmune brain stem inflammation.

Here’s some information about Myasthenia Gravis from the Mayo Clinic site:

Myasthenia gravis (mi-uhs-THEE-ne-uh GRA-vis) is characterized by weakness and rapid fatigue of any of the muscles under your voluntary control. The cause of myasthenia gravis is a breakdown in the normal communication between nerves and muscles.

There is no cure for myasthenia gravis, but treatment can help relieve signs and symptoms — such as weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing.

What I had was what’s called a Myasthenic Crisis where my breathing muscles became too weak to do their job.  Scary!  That is why I ended up on a ventilator in the ICU for a week.  Now it was all starting to make a frightening sort of sense.

I just got moved to a non-monitored floor, so I’m overall doing much better physically.  Though I have several tests scheduled for next week to determine where the disease process is at and if I still need a special kind of blood filtering called plasmapheresis to help me recover the rest of the way.  I also have to have a scan checked to see if I might need surgery as well.  That’s in the short term.  In the long term I still need to get off all the prednsione I’m on that has somewhat been keeping this disease at bay.  That means some harder core immunosuppressant medications or possibly chemo agents to suppress my immune system so it will stop attacking me.

But where does this all leave me emotionally?  Well its like I’ve veered off the road.  This diagnosis wasn’t on the route I was expecting to travel.  And I suddenly feel alone in the dark in a strange place and I don’t quite know where I am.  On one hand I am happy to finally have some answers.  On the other hand this is not a good diagnosis to have.  The idea of ending up back on a ventilator in the ICU every time this gets flared up terrifies me.

It’s tempting to just act the the scared little girl I feel like and curl up in the corner and have a good long cry.  But that won’t really get me anywhere but feeling more miserable and in just a bad situation.  So how do I get back on the road?

I think I will have that cry.  I need to vent some of the shear grief I’m experiencing at the news of this diagnosis.  I’m really really scared and I shouldn’t feel like I have to hide that or put on a happy face to please everyone.  I need some time to feel the weight of my diagnosis and experience the bad feelings associated with it without denying them or stuffing them down.  This doesn’t mean I will wallow in them either though.  But there is a time and place for a healthy dose of sadness.  In fact, I believe it’s perfectly possible to be deeply sad about something and still consider yourself a happy person.

So I’ve veered off the road and had my cry in the dark.  How do I get back?  Now more than ever I must turn to God and Christ to guide me back.  To provide me the strength and comfort I need.  With them I will never be alone in this.  I turn to them in prayer and in the study of scripture.  When people tell me how strong I am in all this, I really feel all that strength isn’t me at all, but my faith in Christ.  With the Holy Ghost as my constant companion  I can’t feel too afraid.  And I can’t feel alone.  The knowledge of Christ’s eternal love for me and knowledge of the pain I’m going through guides me back to the path so that I am no longer veered off the road in the dark.

Finally I have to have trust in myself that I can get through this.  I have found ways to adapt to every obstacle in my path thus far, and I will find ways to adjust to this too in time.  Yes right now I feel crushed, but I will not let this crush me.  I feel devastated, but this will not devastate my spirit.  But in the meantime, to be perfectly honest, there will be a lot of tears shed.  And I’m okay with that.  It’s all part of the process of getting back on the road again.

I’m Daddy’s little girl all grown up, but I still need my daddy.  I want to bask in his strong embrace.  Instead he gives my heart a chase.  He pushes me away into the wrong kind of space.

My dad and I hold polar opposite believes when it comes to the treatment of medicine.  I believe in studies and the scientific method.  He believes in testimonials and isolated case reports.  But that it is neither here nor there. In our differential beliefs we are at in impasse.  And no matter how I beg and plead I can’t get him to respect my wishes.

I even tried a different tact.  I recently agreed that once I am recovered from this current hospitalization I would agree to spend two sessions with an alternativie medicine worker of his choice and fully hear them out and what they think I should do for my health.  But then, my dad went the very next day against my will and set up a consultation between an alternative medicine doctor out of state and my current internist.  This is only one recent example of what has gone on over the years as I have struggled to find my path to health and he as struggled to get me to follow a completely different path.

Feelings are hurt, boundaries has been crossed, trust has been broken.  I am left unsure if I want him in my life at all right now.  As much as it would hurt to cut him out when I need his support the most, he doesn’t seem capable of giving me the support I need anyway.  So much trust has been broken.  I just want him to hold me and tell me it it will all be okay.  Instead he hold me at arms length and tells me what I’m dong wrong.

And the stress from this has been tremendous.  I can’t stop crying.  Between the being sick itself (34 total days in the hospital and counting) and the fear of the great unknown – all we really know so far is that my problem is with some kind of inflammation in the brain stem – it might be MS (multiple sclerosis) or something like it.  And then there’s my dad making it worse.  Telling me the treatment I’m choosing for myself is going to kill me.  He needs to respect that its my body and my choice and he just can’t for whatever issues he has gong n his inner psyche.

So in the meantime…  I will get by without him.

EDITED: to include clarification about my willingness to see certain alternative medicine practictioners.

Relationships are complicated enough, but adding chronic illnesses into the mix increases complications exponentially.  In fact, being bitten by the love bug leads to all sorts of symptoms, side effects, and potential complications.

It’s been a long time since I’ve let myself like a guy.  So imagine my surprise to find myself with a good old fashioned crush on someone.  But I have all the symptoms of a crush.  Fluttering in my chest.  Racing heart.  Warmth in my cheeks.  Funny feeling in the pit of my stomach when I think about if he might like me back.  But it’s also brought up a lot of confused feelings – some not so pleasant.

I feel so inadequate because of my illness.  Why would he want me when he could have countless girls who are whole and healthy?

Dating me would mean dealing with all my limitations that even I don’t want to deal with – side effects if you will.  It would begin with setting the date pending me feeling up to attending.  Not being able to keep plans because of my illness has caused problems even with my closest friends.  Breaking a date wouldn’t exactly be the way I’d want to start a new relationship, but the possibility is a reality that would come with dating me.  Then when he’d pick me up we’d have to lug my wheelchair or walker on the date.  The first thing I want to explain to him would hardly be how to assemble my wheelchair.  At dinner he’d get a full education on my eating difficulties as I filled the waiter in on my food allergies and took pills with dinner that would allow me to digest my food.  Sounds like a pretty mortifying first date in all honesty.

I worry that I wouldn’t be able to do his favorite activities with who ever I date.  I can’t even do my favorite activities anymore.  I can’t go hiking or horseback riding or play tennis.  What if physical activities are an important part if his life?  How would I ever share that with him?

And then there’s the issue of feeling inadequate due to my appearance.  I’ve put on 150 pounds from being on steroids (Prednisone) to control my autoimmune diseases.  Though I’ve now lost a small portion of it, I still feel so physically unattractive.  Not to mention the horrible acne and hair growing in strange places the same medication has also caused.  I so desperately want to be thin again and have clear skin again if only so I will be physically appealing to guys again.

Then if things do work out after the initial shock of dating someone with chronic illnesses, there’s still all the complications that can arise down the road.  What if he gets tired of dealing with the day to day struggle of my illness?  If we someday get serious and get married, the reality is that having children and even sex itself can be difficult with a chronic and painful illness.  If we did have children, would I even have the energy to raise them?

I know.  I know.  Now I’m getting way ahead of myself.  But I don’t really know what else to say.  It feels like nothing I can say will explain how horribly inadequate my illness makes me feel.  I barely have the energy to be a good friend sometimes let alone a good girlfriend.

I hope that someday I find someone who can look past my illness and see me.  But until then I can’t help wishing that the love bug didn’t even bite me in the first place.