Novel Patient Community

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 Share

Related posts:

1. Patience in the Hospital Though I am a Novel Patient, patience isn't my strong suit.  But patience is what...
2. Fear Fear and OCD are a bad combination. It's bad enough to have a fearful thought...
3. Seeing Double There are two ways to look at everything. Like dark and light. Like black and...

I’m Daddy’s little girl all grown up, but I still need my daddy.  I want to bask in him 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.  For example, he went 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.

Recent Comments:

• Bruce commented on Seeing Double [...] Novel Patient shares thoughts on facing life’s difficulties and how to keep a positive attitud
• Maz commented on Hospital Update Just wanted you to know that I am really hoping this procedure lets the pancreas rest & recover.
• Mela commented on Seeing Double big hugs from me, Lauren! I can’t imagine how much courage it takes for you every day to maintain su
• Th. commented on Seeing Double . Good luck!
• Annie commented on Hospital Update I hope the feeding tube goes well – you are in my thoughts times 110! Annie

---

© Novel Patient for Novel Patient, 2010. | Permalink | No comment | Add to del.icio.us
Post tags: ADD, alternative medicine, art, blog, boundaries, brain, brain stem, case reports, chase, Conditions and Diseases, dad, different path, differential, doctor, ER, Fear, feeling, feelings, gong, great unknown, health, health an, hospital, impasse, inner psyche, Internal medicine, internist, isolated case, life, little girl, Medicine, medicine doctor, multiple sclerosis, Neurological Disorders, novel, patient, Physician, scientific method, stress, struggle, title, treatment

Though I am a Novel Patient, patience isn't my strong suit.  But patience is what is required of me right now. My kidney infection has triggered a flare of my Autoimmune Pancreatitis.  I've completely lost my appetite and am having severe upper Share

Related posts:

1. Reporting from the Hospital I hoped for the best, but prepared for the worst, and unfortunately the worst won...
2. Fear Fear and OCD are a bad combination. It's bad enough to have a fearful thought...
3. My Illness By The Numbers 17 The number of diagnoses I've accumulated so far... Sjogren's Syndrome, Autoimmune Pancreatitis, Autoimmune Hepatitis,...

Through my chronic illness, I have come to realize how crucial it is to have faith.  When most people think of the word “faith” they think religion, but there are so many other aspects to keeping faith alive in your life through dark and difficult times.  In fact, the word “faith” is merely defined as “confidence or trust in a person or thing.”

I have been blessed with always having a tremendous faith in myself.  Faith that I have the ability to get through anything no matter what life rolls my way.  But oddly enough, I believe my faith in myself stemmed from my childhood traumas.  As a child I was forced into the role of the third parent in my house.  As painful as it was it gave me an inner strength — a knowledge that I was capable of getting through anything if I just believed in myself.

This inner strength and faith in myself was strengthened as I battled depression.  Living for three years with intrusive thoughts on hurting myself or ending my life and yet not acting on them, save three minor occasions, gave me the faith in myself that I could get through anything if I was determined enough.

So when my illness struck, I’ve always had the faith that I can get through this as well.  Though it isn’t always easy… in fact it hardly ever is, I have kept the faith in myself that I am a strong enough person to deal with whatever I find in front of me.  And that faith has gotten me through the endless doctors appointments and tests, the six and half years of searching for a diagnosis, the prolonged hospitalizations, adjusting to life in a wheelchair, and the daily struggle to keep a positive attitude despite my pain and other limitations.

I have also learned how important it is to keep faith that things will get better, that I will get better.  I have to have faith that I will find a treatment or even a cure that will allow me to live a more normal life again in the future.  This faith that things will be more than okay — faith that things will get better sustains me during my darkest hours.

And then there’s faith that I have in others.  I don’t keep my illness private.  Through this blog, through the people I meet and share my story with, I share my journey with the world.  And I have to have faith in people.  That they will understand.  That they will be there for me.  And though I sometimes find myself disappointed, overall I find that when I put my faith in others they rise to the occasion.  It’s as if they were waiting for me to put my faith in them.  Waiting for me to put my blind trust and confidence in them, and they respond by being there for me in more ways than I can count.  And I am so blessed and grateful for this.

Finally there is the ultimate faith.  The kind you have despite the lack of evidence or proof.  Faith in God.  Though I try to keep this blog secular, I feel I would be amiss if I didn’t share this part of my journey.  Though I was raised Reform Jewish, it never really resonated with me.  It is a beautiful religion, but through it was hadn’t found the close connection to God I’ve so desperately craved especially in the last few years as I’ve struggled with my illness.  I’ve tried out several different churches over the years.  I was going to a Universalist Unitarian church for a while, and though I loved the people and how open they were, I still didn’t find what I was looking for in terms of a close and personal relationship with God.  Finally, two Sundays ago I went to a Church of Jesus Christ of Latter Day Saints or Mormon church with a friend.  There I finally found what I had been searching for.  I have found the faith in God that I had been seeking.  I realized I had it all along.  I’ve prayed for a long time to find this closeness to God that I now finally feel, but I never expected to find it through Christ, and yet there it is.  And as surprising as it is to my friends, family, and even myself, I am getting baptized in a month.    And so I am really excited to embark on this new journey of faith.

Faith is so important no matter what form it takes.  When you are suffering physical pain all the time what else do you have to turn to but some sort of faith that things will be okay.  Whether it comes from within or from others or from God, faith is what has sustained me through my battle with chronic illness.

Recent Comments:

• Alison commented on Fear a little cry once in a while doesn’t hurt anything
• Sandra Lee commented on Fear My heart is with you! May you pull through without all the “what ifs” happening.
• amanda commented on Fear Girl you know the Lord is watching over you and you will be fine *hugs* love you <3
• Jeanne commented on Full Disclosure Hi Lauren, This is a great post. The vast majority of my 28 years (out of 41) living with chronic il
• faeryqueen21 commented on Box of Hope Lauren this box is such a wonderful idea. I really wish I had had something like this when I was goi

---

© Novel Patient for Novel Patient, 2010. | Permalink | 4 comments | Add to del.icio.us
Post tags: Appointment, appointments, art, blog, childhood traumas, Chronic, Chronic Illness, confidence, cure, daily struggle, depression, diagnosis, difficult times, doctor, Doctors, faith, family, God, hope, hospital, hospitalization, Hospitalizations, illness, inner strength, inspiration, intrusive thoughts, Jesus, Jesus Christ, journey, keeping faith, Latter Day Saints, LDS, life, Mormon, novel, pain, patient, positive attitude, religion, self control, share, ssi, story, treatment, waiting, wheelchair, word faith

Sometimes you expect one thing and get another… especially when living with multiple chronic illnesses. I finally saw the Sjogren’s specialist at yesterday.  He spent a good 40 minutes pouring over my records and taking notes on them.  He listened to my insanely long list of symptoms.

The interesting thing is he came to the conclusion that Sjogren’s probably isn’t my main diagnosis.  He really feels that I have some sort of autoimmune neurological disorder going on causing the seizures, episodes of paralysis, tremor, severe pain upon standing that has me in a wheelchair, motility problems, bladder problems, memory problems, and recent facial drooping and uneven pupil dilation.  He thinks the Sjogren’s is secondary to whatever is causing all of that.

He’s going to be coordinating with my normal rheumy to get me a lot more specific tests to work me up for this and try and figure out if this is originating in the peripheral nerves, ganglia, or brain.  He said he suspects that it is probably in both either the peripheral nerves or ganglia and also in the brain.  He also probably wants to me travel to John Hopkins to see a neurologist specializing in this there.  He said my case is one of the most unusual and complex and in my situation I need to go to the top doctor even if he or she is located on the other side of the country.

I’m not totally sure what to think and am still processing this.  I went to him expecting to discuss other treatment options for Sjogren’s and am now going to be pursuing an alternative primary diagnosis instead.

I’m also feeling pretty scared.  I feel like I’ve been thrown back out into unknown territory again.  Back trying to tread water in the deep end of the pool.  I also know that the kind of disease he thinks I probably have is not something that is good to be diagnosed with.  I’m also frustrated that no one has really seriously pursued the neuro stuff thus far and that I had to drive 3.5 hours to see a Sjogren’s specialist to figure that Sjogren’s probably isn’t my main problem.  Sigh.

I guess part of it too is that another whole year of my life has rolled by… I just turned 26… and now we are back at trying to diagnose me again which means its going to be even longer till we can start a treatment other than prednisone again which means its going to be even longer before I have some hope of having some semblance of a “normal” life back again.  Maybe its because it’s that time of the month right now as well, but I’m just feeling really upset and like this is a step backwards.  I know intellectually it is really maybe FINALLY a step in the right direction, but it sure doesn’t feel that way right now.  I’m 26 and I want my life back.  I’ve been too ill to have a “normal” life since I was 18.  I’m just so tired of it all.

I guess the worst part is the not knowing what’s going on or what to expect.  If the doctor were to just tell me I’m going to be stuck in a wheelchair for the rest of my life at least I could learn to live with that fact.  But I don’t have any facts right now to learn to live with so I can grieve and move on.  Yes I suppose that’s the worst part of all.

I feel so lost right now I don’t know what to do with myself really.

In the meantime, my mom and I are staying at my grandma’s since she lives by this new Sjogren’s specialist which was 3.5 hours away from where I live.  We’ll be driving back on Wednesday.  The Sjogren’s specialist said he’d get back to me in about 2 weeks  – after he has a chance to talk to my current rheumy and review all the neurological testing I’ve already had done, so that we don’t repeat any tests unnecessarily.  Then there are a bunch of specialized neuro tests that I’ll need to have done either around here or at Johns Hopkins.

Intellectually I know this is a good thing and that finally getting the correct diagnosis will lead to the right treatment that will eventually get me healthier and able to live more of a life.  Right now I’m just feeling kind of depressed about the whole thing.  I’ll be okay though.  Just takes a little time to process all of this.

In the meantime I’m staying more than busy.  I’ve been continuing on with National Novel Writing Month where you try to write a 50k word novel in 30 days.  So far I’m at about 12k words, so I’m doing fairly well.  I’ve been letting a handful of beta-readers read along as I write it, and the feedback has been extremely positive and motivating for me to keep writing.  I’m also working on designing two online games and working on a huge needle point.  So at least I’m not bored. 

It all really comes back to maintaining hope.  Emotionally this has been a bit of a setback for me because I was expecting answers and got more questions.  But I choose to maintain hope that this will lead me to the right treatment in time.  Ultimately I already have whatever I have.  The diagnosis — the label — won’t change that.  I am learning to live with whatever it is regardless.  And I have faith in myself that I will get through this.  As long as I don’t loose hope I haven’t really lost anything.  There are always new options and opportunities I can make for myself if I remain hopeful and open to them!

Recent Comments:

• Annette commented on Walking: The Power of Positivity and Prayer I heard about the insanely slow taper from someone else, and she had the most success of anyone in a
• stephanie commented on Walking: The Power of Positivity and Prayer That is wonderful! Keep up the great work. Stephanie
• Mel commented on Walking: The Power of Positivity and Prayer Congrats!!! I remember the first time I walked. Keep that faith……..God can work miracles!
• Heidi commented on Walking: The Power of Positivity and Prayer Look at you – all up and about!!! You GO girl! You’re an inspiration, and despite your illnesses, an
• Alison commented on Walking: The Power of Positivity and Prayer Awesome accomplishment, and that’s great you’ve set a goal for yourself with walking, something I ke

---

© Novel Patient for Novel Patient, 2009. | Permalink | 8 comments | Add to del.icio.us
Post tags: autoimmune, autoimmune disease, bladder problems, brain, Chronic, Chronic Illness, chronic illnesses, diagnosis, disease, doctor, faith, ganglia, health, hope, illness, illnesses, john hopkins, johns hopkins, life, memory problems, national novel writing month, neurological disorder, neurologist, novel, pain, paralysis, peripheral nerves, Prednisone, seizures, severe pain, sjogren, sjogren's syndrome, specialist, symptom, treatment, treatment options, tremor, uneven pupil dilation, unknown territory, wheelchair, Writing

Tomorrow I am heading down out of town on a trip to see a Sjogren’s specialist.  My appointment is on Monday.  Since it is about 3 hours away we — my mom and I — will be spending two nights at my Grandma’s house which is in the area.

I have high hopes that he will be able to provide me with some new treatment options.  At the same time I am nervous about getting my hopes up too high.  I have been disappointed by doctors many times before.

It can be hard to maintain hope when living with a chronic illness especially when you are told by your doctor that you are basically out of treatment options.  But the alternative — falling into despair — is much much worse.  So I choose to maintain my high hopes knowing full well that sometimes I will be disappointed.  That’s okay.  Disappointment is a part of life.  I realized a long time ago that you have to take the good with the bad.

On a different note… Sometimes I surprise even myself with what I can do if I set my mind to do it.  Since the start of the month I have been writing up a storm on novel for National Novel Writing Month or NaNoWriMo.  As of this writing, I am up to 10,701 words which puts me about 700 words ahead of schedule!  You can go to my NaNoWriMo Profile page to continue to follow my progress and to read a synopsis and excerpt from my novel.  Since I started doing creative writing again, I’ve been on sort of a writers high.  I don’t remember the last time I was in such a great mood for days at a time!

I’ve also stood up another time for a another whole minute.  I haven’t been able to do it as often as I would like, but the fact that I’m doing it at all makes me very happy.

I think hope is self-perpetuating.  Hope gives you the strength to reach beyond what you think you can do which in turn gives you more hope.  And all these things give me hope for a good today and a better tomorrow.

Recent Comments:

• Jen commented on Dependency Congratulations on the walking!!! That’s fantastic! Is there a possibility of you regaining mobility
• IamFree commented on De-Stress Hi there. My advice is to get a book that will make you look at the things that stress you and asks
• IamFree commented on Keeping The Faith Hi there. If you still have intrusive thoughts now is the time to work on it next. Faith will help y
• Janeen commented on Dependency Wonderful post! You’ve caught the spirit of the blog carnival beautifully. It’s hard to see how a ch
• amanda commented on Dependency Your posts are always an inspiration to me!

---

© Novel Patient for Novel Patient, 2009. | Permalink | No comment | Add to del.icio.us
Post tags: Appointment, Chronic Illness, despair, disappointment, doctor, Doctors, grandma, high hopes, hope, illness, mom, nanowrimo, national novel writing month, novel, sjogren, specialist, treatment, treatment options, Writing

Sometimes in the face of adversity you just have to stand tall.

My doctor woke me up on Sunday morning to tell me that I may have a blood disorder – Polycythemia. Unless there’s been a mistake either with the lab or the blood draw itself, I am making too many red blood cells and my iron is much too high. He was hesitant to tell me what might be causing it, but if the repeat test I got today still comes back high he wants me to go see a Hematologist. I looked it up myself and the possibilities of the causes are rather frightening… ranging from cancer to a terminal illness to kidney disease.  Needless to say I’ve been feeling rather anxious about it.

In addition, I’ve started tapering my Prednisone dose again post face drooping.  My neurological symptoms of my brain inflammation have been coming right back.  My tremor especially has been so bad I am having trouble doing simple tasks.  It’s so frustrating I just want to cry.

So this evening talking to Melissa, my caregiver, about it I broke down.  I’m so tired of it being one thing after another!  It’s two steps forward one three steps back.  So I decided to take a stand.  Literally.  I wanted to see how long if at all I could bare the joint pain I get while standing.

We turned my wheelchair around so I could use the back of it to hold myself up, and Melissa sat in the chair to help weigh it down so it wouldn’t tip.  Trembling I slowly pulled myself to my feet.  It was agony.  But I shifted my weight until I found a bearable “sweet spot”.  And then I stood there for a over a minute!

It was excruciating and exhausting.  I needed to lay down afterward and take some extra pain medication.  But the victory was well worth it!  I stood for longer than I’ve been able to in over a year! I showed my illness who is boss!

I still have high hopes that the Sjogren’s specialist I’m seeing on November 9th will have some new treatment options for me that will significantly help my joint pain and neurological symptoms.  But in the meantime, I will continue to take a stand against my illness.

Recent Comments:

• Mela Eckenfels commented on Freedom Drive Hey, I would like to donate some bucks for your dream of mobility, but giveforward.org is a failure
• Kim commented on Wheelchair Dance That was fantastic!!!!!!!!!! First, my fingers were goin’ on the keyboard – I challenge anyone to lo
• Alison commented on Wheelchair Dance What an great blog! I used to dance to that song (turn around) alone in my room in 7th grade. And yo
• WackyLisa commented on Wheelchair Dance You’ve reminded me of how much fun I had at a workshop put on by AXIS Dance during college. I don’t
• Heather commented on Wheelchair Dance That’s SO awesome!! I love it! Have you seen the Glee episodes with the wheelchair dancing? You’d ge

---

© Novel Patient for Novel Patient, 2009. | Permalink | 4 comments | Add to del.icio.us
Post tags: adversity, agony, blood disorder, brain inflammation, caregiver, disease, doctor, hematologist, high hopes, hope, illness, joint pain, Medication, Medicine, neurological symptoms, pain, pain medication, Polycythemia, Prednisone, red blood cells, sjogren, sweet spot, symptom, terminal illness, treatment, treatment options, tremor, weight, wheelchair

“You are basically out of treatment options at this point.”

My rheumatologist’s words were like a slap in the face.  The realization that I may be at the end of the road isn’t easy to accept.  The Rituxan didn’t work.  My rheumy doesn’t want to try anything else at this time.  Should I just accept that this is how my life is for the foreseeable future?

I’ve been in a wheelchair for just about a year now.  Perhaps it is time to stop thinking of it as a temporary thing and accept it as a permanent part of my life.  Doing so seems reasonable enough under the circumstances, so why do I feel like such a failure?  Is it wrong that part of me wants to stop fighting it all the time and just get on with living as things are?  Does that mean I’ve given up?

But there is a glimmer of hope.  My rheumy has referred me to another rheumy who specializes in my main diagnosis, Sjogren’s Syndrome.  I still am hanging on to the hope that he’ll have another idea for treatment for me, and that this time it will work.  But I’m kind of terrified that I’m just setting myself up for more disappointment.

Recent Comments:

• Britta commented on The Unexpected It sounds like you have Chronic Lyme Disease! There is hope…even though it is a big controversary
• Jeanne commented on Visualizing Symptoms Lauren, Thinking of you! Jeanne
• Jeanne commented on The Unexpected Lauren, I am sorry about your frustration and disappointment. These are certainly understandable
• justsaynoemore commented on The Unexpected Lauren, just to say I am thinking of you and hope that this new road leads to answers and good treat
• Marti commented on The Unexpected I especially appreciate your closing image of the door ajar. Opening? Or closing? From your point of

---

© Novel Patient for Novel Patient, 2009. | Permalink | 10 comments | Add to del.icio.us
Post tags: Chronic Illness, diagnosis, Diseases, failure, hope, life, Rheumatologist, rituxan, sjogren's syndrome, treatment, treatment options, wheelchair

1. The illness I live with is:  Sjogren’s Syndrome, but I also have Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto’s Thyroiditis, Fibromyalgia, and Arthritis.
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: I was a small child.
4. The biggest adjustment I’ve had to make is: to life in a wheelchair.
5. Most people assume: that I’m too young to have this many health problems.
6. The hardest part about mornings are: waking up way to early in pain and never getting enough sleep.
7. My favorite medical TV show is: House, I suppose, but I don’t really watch it anymore.  I have a hard time concentrating on TV.
8. A gadget I couldn’t live without is: my mac.  It is my connection to the rest of the world.
9. The hardest part about nights are: trying to get sleepy despite the pain.
10. Each day I take 28 different medications. (No comments, please)
11. Regarding alternative treatments I: am only open to trying ones that have been shown to work in some sort of clinical trial.
12. If I had to choose between an invisible illness or visible I would choose:  an invisible one.  Since I’ve recently started using a wheelchair, my illness has become move visible and I long to look “normal” again.
13. Regarding working and career: I am currently on disability.
14. People would be surprised to know: that I don’t remember what “no pain” feels like.
15. The hardest thing to accept about my new reality has been: that I can’t just push through the pain and exhaustion without making myself sicker.
16. Something I never thought I could do with my illness that I did was:  travel for pleasure, but I recently went to an alternative reality gaming conference in Portland.
17. The commercials about my illness: don’t exist (which could be why no one seems to have heard of it).
18. Something I really miss doing since I was diagnosed is: hiking and other physical outdoor activities.
19. It was really hard to have to give up: my independence, but I’ve had to learn to accept a lot of help from others.
20. A new hobby I have taken up since my diagnosis is: scrapbooking.  I’m completely obsessed and even do it from bed when I can’t sit up at the table.
21. If I could have one day of feeling normal again I would: backpacking through Australia.
22. My illness has taught me: that happiness is where you make it for yourself.
23. Want to know a secret? One thing people say that gets under my skin is: “You just need to exercise more.”
24. But I love it when people: Call or email me out of the blue to let me know they are thinking of me even if I haven’t been up to hanging out lately.
25. My favorite motto, scripture, quote that gets me through tough times is:  Everything might not happen for a reason, but you can make a reason out of everything that happens.
26. When someone is diagnosed I’d like to tell them: that life isn’t over and that they will find ways to cope and adjust.
27. Something that has surprised me about living with an illness is: how much opening up and sharing about my illness has given me the opportunity to meet new people who in turn share about themselves.
28. The nicest thing someone did for me when I wasn’t feeling well was: lug all my scrapbooking supplies to me in the hospital, so I could take my mind off being there with my favorite activity.
29. I’m involved with Invisible Illness Week because: I hope by raising awareness people will have more sensitivity and empathy for the people in their lives with invisible illnesses.
30. The fact that you read this list makes me feel: hopeful that my sharing about my experiences will make positive difference.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.comRecent Comments:

• Donna E commented on Pain Scale I, too, live with several chronic pain conditions: rheumatoid arthritis, fibromyalgia, raynaud’s, ch
• blog about health and medical devices commented on Pain Scale health care is much better before the disease, whatever its scale
• alan m rogers commented on Dreaming Big It’s awesome to see people with chronic illness taking up NaNo – and other challenges. I had to leav
• Steve commented on Dreaming Big Go for it! I’m rootin for you… keep your dreams alive… always! Here’s some food for thought to h
• Grandma commented on 10 Ways To Stay Organized With A Chronic Illness I appreciate you doing this blog…you have put alot of work into it and it shows. As I am reading t

---

© Novel Patient for Novel Patient, 2009. | Permalink | 3 comments | Add to del.icio.us
Post tags: alternative reality, arthritis, autoimmune, autoimmune hepatitis, autoimmune pancreatitis, diagnosis, Disability, exhaustion, fibromyalgia, hard time, health, health problems, hospital, illness, illnesses, Medication, pain, scrapbooking, sjogren's syndrome, symptom, treatment, wheelchair

My dad and I REALLY don’t see eye to eye when it comes to my choices of treatment.  He has a very hard time accepting that as a 25 year old woman they are in fact my choices and not his.  My dad is a staunch believer in some pretty radical (and some not so radical) alternative medicine treatments.  He believes that all my doctors are wrong because they are from a western medicine perspective.  He doesn’t even believe in my diagnosis.  So he sees my choice to follow conventional treatments in effect killing myself.  His words not mine.

This makes it VERY difficult to have a relationship with him since right now my health is such a big part of my life.  And he won’t agree to disagree.  I feel at such a loss at what to do.  I don’t want to cut him out of my life, but I don’t need his constant negativity about my choices.  I’m the one who is sick.  I shouldn’t have to take care of him and his anxieties as well.  But that’s basically been my role in my family my entire life.

As much as I wish my dad will change, I don’t believe he ever will.  I don’t know what that will mean for our relationship going forward, but it makes me sad that my illness is driving another wedge between a person I love and myself.  It happened with so many friends who just didn’t want to or couldn’t or didn’t know how to deal with someone their age being chronically ill.

People have such strong and personal reactions to someone else’s chronic illness that I think they easily forget what that person is going through.  My dad is afraid of some horrible side effect occurring from a medication I’m on, but he never acknowledges MY fears.  He tells me how he is sooo worried about me every day, but what am I supposed to DO with that?  Does he really expect me to be the one to comfort HIM?!

Just because I put on a brave face and do very best to be optimistic and make a life for myself despite my illness doesn’t mean I don’t have needs too.  It doesn’t make the intense lonliness and isolation or the fears for my future or the daily physical pain of my illness any less.

Buy my dad doesn’t see it this way.  So he continues to drive the wedge in deeper.  And it hurts.Recent Comments:

• Akiyo commented on Rituxan Take Two Wow, that’s amazing that you posted that video! Thank you for sharing such personal moments. Your ca
• Novel Patient commented on The Rituxan Gamble Thanks so much for including me in your medscape post! A video of my second infusion is coming soon!
• Barbara Olson commented on The Rituxan Gamble Just wanted to let you know I included your post in one I put up this afternoon. Thanks for sharing
• Katgirl commented on A Moment Hope this gamble is a lucky one for you. I am awaiting insurance approval for my own gamble. Best wi
• Amanda commented on A Moment I am praying for you…I hope you feel well

---

© Novel Patient for Novel Patient, 2009. | Permalink | 3 comments | Add to del.icio.us
Post tags: alternative medicine, anxieties, choices, Chronic Illness, dad, diagnosis, doctor, family, Fear, health, illness, lonliness, Medication, negativity, treatment