Novel Patient Community

Appearances can be deceiving with a chronic illness.  Looking at a person you usually can’t even begin to see what they are going through.  Sometimes even your doctor can’t see what’s right in front of them.  Sometimes you have to spell it out for them.  Especially when you have a lot of symptoms and medical problems, I’ve found it extremely helpful to bring your doctor a printed list summarizing your medical history and list of symptoms broken down by category.

This serves another purpose as well.  When you have an unexpected and most unwelcome flare of autoimmune pancreatitis pain, you can distract yourself by making it into art while you wait for your pain meds to kick in!

Head over to Wordle to try it out for yourself (and feel free to link me in the comments).

Recent Comments:

• alan m rogers commented on Walk By Faith Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro
• Jen Fryer commented on Walk By Faith What wonderful news. I cannot tell you how happy I am for you.
• Alison commented on Walk By Faith I know it can be hard to talk about your faith in this kind of forum, but I’m glad you did! The best
• 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

© Novel Patient for Novel Patient, 2009. | Permalink | One comment | Add to del.icio.us
Post tags: Allergies, anxiety, Appendectomy, art, autoimmmune, autoimmune, autoimmune hepatitis, autoimmune pancreatitis, Cholecystectomy, Chronic, Chronic Illness, concentration, Costochondritis, depression, distraction, Erythomyalgia, Fatigue, fever, fibromyalgia, flare, Hashimoto, hospitalization, Hospitalizations, Hospitalized, iga deficiency, illness, intolerance, involuntary muscle, kidney infection, medical history, medical problems, meds, memory problems, muscle weakness, numbness, obsessive compulsive disorder, Osteopenia, pain, pancreatitis, pupils, seizures, severe pain, sjogren, sleep, sleep apnea, stomach pain, symptom, symptom list, tag cloud, tremor, wheelchair, word cloud

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

“How would you rate your pain on a scale of 1-10?”

I detest this question.  But I get asked it all the time from my doctors.  How can you apply a pain scale to chronic pain?  I don’t even remember what no pain feels like.  So the whole scale seems to shift.  Pain is so relative.  I have gotten used to being in pain all the time.  I’ve gotten used to the constant stomach pain from the Autoimmune Pancreatitis and the debilitating joint pain that keeps in the wheelchair.  Not something you want to get used to.  But it’s amazing how much I can even take my normal level of pain for granted.

The last 3 days I was without my pain medication due to a major pharmacy mess up coupled with a significant insurance snag.  My stomach hurt and my joints seemed to be screaming with pain.  In more pain, I was more drained, more cranky, more emotional.  I couldn’t sleep well.  I’m yawning even now from the last few nights of poor sleep.  But strange thing was, I didn’t let myself realize how much pain I was really in until it was over… after I finally got my pain meds today again.

The sudden relief from pain was dramatic.  It’s amazing what you can live with when you have no choice, but I won’t be taking my “normal” level of pain for granted so quickly again.

Recent Comments:

• sally in norfolk commented on De-Stress Thankfully i dont have much stress in my life at the moment but when i did i de-stressed by going ru
• Gilly commented on De-Stress I de-stress by spending time online, mostly with my support group members and chatting with friends,
• amanda commented on De-Stress You r a great friend for being there all those times . I do a lot of writing or actually chatting
• Lelia Rose Foreman commented on The Unexpected My website is in the process of being built. I am extremely slow at such things. On the other hand,
• Katgirl commented on Seeking an Accessible Vehicle Perhaps, don’t think of it as a permanent wheelchair. If this chair helps you be more comfortable, c

© Novel Patient for Novel Patient, 2009. | Permalink | 4 comments | Add to del.icio.us
Post tags: autoimmune, autoimmune pancreatitis, Chronic, chronic pain, Insurance, joint pain, joints, Medication, meds, pain medication, pain scale, pharmacy, relief from pain, sleep, stomach pain, wheelchair

Right now I’m waiting for some extra pain meds to kick in.  I’m trying to tapper my Prednisone dose down from 25mg a day to 20.   It doesn’t seem to be going well.  After dinner that telltale Autoimmune Pancreatitis pain started up for the first time since I was in the hospital last.  Not good.  I’ve also been running low grade fevers in the afternoons.  I suppose I’ll be putting in a call to my Rheumatologist tomorrow.

I also need to call my Internist for an appointment to check out what seems suspiciously like a sinus infection.

And I have a handful of other medical related calls to make (including some especially dreaded ones to my insurance company).  It’s enough to make me want to go hide under the covers and go back to sleep.

I always tell people that you have to be your own advocate, but it can be downright exhausting under the best of circumstances let alone when you are sick.

But I, like so many others, don’t have anyone else to do it for me.  So I have to be my own advocate.  I have to stay on top of these phone calls and appointments and lab results and new symptoms.  But lately it just wears me down and out.  It’s a lot of stress and a lot of effort.  Mentally and emotionally.  It’s all in the details, and so much is at stake.

It shouldn’t be this way though.  When people are sick they should be able to just focus on getting better and not navigating through medical bureaucracy and red tape.  It scares me to wonder what would happen if I became completely to ill to do it for myself.  Who would advocate for me then?  There are so many people already in that very situation.  I shudder to think what kind of care they are getting.

There must be a better way.

In the meantime, I do what I have to do regardless of the brain fog making it hard to think straight and the fatigue making it hard to keep my eyes open.  Because I’ve learned that even though being a professional patient is a full time job, you don’t ever get to call in sick.

Recent Comments:

• Marti commented on Blogiversary: A Belated Thanksgiving And we are grateful for your upbeat willingness to give this battle your all and stay true to your c
• 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

© Novel Patient for Novel Patient, 2009. | Permalink | 5 comments | Add to del.icio.us
Post tags: advocate, appointments, autoimmune, autoimmune pancreatitis, brain, brain fog, bureaucracy and red tape, circumstances, Fatigue, fever, hospital, Insurance, insurance company, internist, low grade fevers, meds, pain, patient, phone call, Prednisone, professional patient, Rheumatologist, stress, symptom, waiting

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

Sometimes things come crashing down emotionally.  I didn’t realize what an emotional toll being so ill in the hospital with a double kidney infection had until yesterday.  I didn’t let myself feel it in the midst of the crisis.  I guess I was in survival mode.  Literally.

But yesterday gave me a chance to reflect on it.  I was at my regular monthly appointment with my psychiatrist (who I absolutely adore), and he was asking me the normal questions about my physical health as it affects my mental health and everything just sort of hit me.  And I started to cry.  All the stress I had been burrying so I could make it through the hosptial stay and infection and 10 days of at home IV antibiotics came bubbling up to the surface.  I didn’t shed many tears because my illness, Sjogren’s Syndrome, damages my tear production… among other things.  And that made me cry harder.

And then finally dealing with my immediate past made me think about my immediate and not so immediate future.  And I cried because the future is so unknown and that is just plain scary.  This round of IV immunospupressants – Rituxan – doesn’t seem to have worked.  That is enough to make me cry in itself.  It is just so disappointing.  I am unsure what I should do next?  Should I risk suppressing my immune system further and more potentially dangerous infections like the one I’m just recovering from and get another round?  Will it even work?  Should I try something even stronger?  Or should I not take the risk and learn to accept my life as it is.  Is my new “normal” getting around in a wheelchair and being in pain and exhausted all the time with dibilitating and life threatening symptoms?  Is that how I’m going to be forever?  If this is how I am at 25, what will my life be like at 50?  Will I ever be independent again?  Will I need a caregiver forever?  And the scariest of all… how long is forever if I continue to be this sick?  Will I die from my autoimmune diseases and not with it?

But after crying this out of my system I realized I need a “new look” on many levels.  I can’t LIVE my life if I’m thinking this way all the time, so I don’t.  But I did need to get it out of my system once and a while.  The rest of the time I am thankful for what I still do have.  I am usually happy.  I have a wonderful caregiver in whom I’ve found a great friend as well.  I have the most wonderful and supportive community of online friends a girl could ask for.  I have a sister who does everything she’s able to support me.  A dog who loves give me cuddle therapy.  My writing, creativity, faith in myself, and most importantly HOPE!

I also got myself a “new look” in a more literal sense.  A new haircut and a new outfit.

Recent Comments:

• 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
• Orphanus commented on My Own Advocate I wish I had something more enlightening to say than “amen sister”. I guess I’ll go with a simple “I
• J commented on Pain Scale My understanding is that the pain scale is *meant* for acute pain. It has been transferred to chroni
• Michelle commented on Pain Scale Well said..
• J commented on Crooked Smile I just wanted to let you know I gave you a couple of blog awards You can find them at this post:

© Novel Patient for Novel Patient, 2009. | Permalink | 4 comments | Add to del.icio.us
Post tags: antibiotics, autoimmune, autoimmune diseases, caregiver, dangerous infections, emotional toll, faith, health, hospital, illness, immune system, kidney infection, mental health, new haircut, pain, risk, sjogren, stress, survival mode, wheelchair

Lately I’ve been gambling a lot.  No, not at the casino, but with my life.  My life, I’m realizing more and more, is a gamble.  I hope and I wish and I make educated decisions with risk analysis, but in the end I must simply roll the dice and see where they fall.

Recently, I took a big gamble with my health when i decided to try Rituxan for my various autoimmune diseases.  Like going all in on the last round of the night, I decided to take the chance that I might have devastating and even life threatening side effects for the chance to win big – for the chance to have more energy, to walk again, to be without pain, to be healthy again.

I’ve been fighting with my insurance company for months trying to get this extremely expensive treatment.  It’s essentially low dose chemotherapy.  It’s not cheap.  Not to mention dealing with doctor’s office mix ups with requesting the wrong medication.  Then trying to figure out where I was going to get the IV infusion.

So after months of problems, I was surprised to feel so nervous as the day of the infusion actually approached.  I was frankly terrified.  Terrified not only that I would be one of those very rare people who ends up with a horrible life altering side effect but also that I would end up exposed to Latex while there triggering a life threatening allergic reaction.

My mom and my caregiver Sarina both came with me on Wednesday to the infusion.  After considerable delay while they setup a Latex-free room for me to get the infusion, I somehow transferred from my wheelchair to the too high up exam table and tried to make myself comfortable.

The nurse was a pro and got the IV started without a problem despite my needle resistant and scar covered veins.  I brought my laptop with me and hopped onto some unsuspecting person’s unprotected wireless network and chatted with my friends online while the nurse gave me my premedication.

Things were going pretty well until shortly after she started the actual Rituxin.  I started feeling dizzy, sleepy, and was breathing shallowly.  My nails turned blue.  My mom, quick to advocate for me, requested they give me some oxygen.  Luckily that quickly made me feel much better.  My doctor popped his head in to check on me and  told me that I must be one of the lucky 3% who have breathing difficulties with the infusion.  Lucky me indeed.  The rest of the infusion went without incident.  I was worried that the breathing issues would persist after the infusion was over but fortunately a few minutes after the infusion finished my breathing returned to normal.

The next day (Thursday), however, I felt horrible.  I had the worst back pain of my life.  Right up there with double kidney infections.  I wondered if my gamble was going south.  But a quick call to the on call rheumatologist confirmed that I was having a bad reaction to the Rituxan, and he told me to bump up my dose of Prednisone significantly to calm everything down.

With the extra Prednisone and a lot of extra sleep I was feeling a lot better by yesterday.  Well enough that I took another gamble and dragged myself out of bed to see Up.  That was clearly a bad move because I feel awful again today.  But you can’t win every hand, right?

I won’t know for about two more months whether this gamble will pay off or not, and in the meantime I get to do another infusion on July 1st.  But I keep telling myself that as long as I get the big prize in the end, it will all be worth it.  Because most of life is a gamble.  You don’t know how things will turn out in the end.  There are risks to trying this Rituxan, but there are risks to not trying it as well.  So I made a choice when I decided to go ahead with the Rituxan.  I decided to roll the dice and hope that I’d like where they fell because I have my whole life ahead of me and I want it to be something worth risking for.  And well… I guess that’s a risk I decided I’m willing to take.

And with that I’m going to take another nap.Recent Comments:

• ConnieFoggles commented on On The Mend Didn’t know that you were in the hospital. So sorry to hear but glad that you’re home. Feel better.
• Katgirl commented on On The Mend Both are awesome pictures Glad you are home.
• Tom commented on On The Mend Hey, Just wanted to say hello and I glad to see your home now. My name is Tom and my mother just wen
• Dolores Middleton commented on Venting… You have every right to be angry, frustrated and feeling sorry for yourself. Life throws us curves t
• Dolores Middleton commented on On The Mend You are so incredibly dedicated. Why did n’t you tell me you just got out of the hospital. I would h

© Novel Patient for Novel Patient, 2009. | Permalink | 2 comments | Add to del.icio.us
Post tags: autoimmune, autoimmune diseases, chemotherapy, doctor, Insurance, insurance company, latex, Medication, nurse, Prednisone, Rheumatologist, Rituxin, wheelchair