With a Cherry on Top

With several overlapping health issues it's not hard to end up feeling attacked from every angle at times.  Right now my fibromyalgia is pretty well managed.  It's not perfect, but I'm not going to hold my breath for perfect.  It has reached a tolerable point and I am becoming used to the muscle relaxants enough to not feel knocked out with every dose.  My IC is still flaring and I'm having a hard time managing the pain.  Hot baths help the pain in my back, sides, and pelvic region.  One can only spend so many hours a day in hot baths though!  I am looking forward to seeing my urologist in the morning for this flare.  The thing that it killing me today is nothing other than the ubiquitous hay fever.  Seasonal allergies.  Oy.

The ground is coming alive outside!  Flowers are starting to poke through the ground.  Trees are starting to swell where leaves will start to open in the coming weeks.  The sun is starting to stay up longer and feel warmer.  The last of the crevices that had filled with ice and snow have melted clear and are waiting to fill instead with wandering morning glory vines or dandelions, just to keep things interesting in the landscaping department.  All the world I spend every day in is beginning to warm and cheer...  and in the glory of it all I feel ungrateful to be sneezing, snuffling, and nursing a throbbing head.

I have a nasal spray my doctor prescribed last year when I had sinus infections one on top of another thanks to the congestion.  I have had allergy testing done in the past and every local weed that was tested popped up a red welt on my inner arm.  Several local wild trees popped up too.  The biggest welt lasted a week!  It was the test for mountain cedar -- the tree that is currently blooming.  I will have to rediscover the best medication to manage my allergies during the day without knocking me out and during the night without keeping me awake.  I know that if I am kept awake with stupid hay fever my entire body will rebel again.  That's too high a price to pay in my opinion.  I am using a selection of essential oils, but at a certain point it's time to break out the long acting time released relief!

IC flare

Last night Hubs told me he would be working from home today.  I was to sleep in and get lots of rest so I could start feeling better.  By dinner time last night I was in pretty major pain in my bladder.  As soon as dinner was over I went and soaked in a hot bath with jets for about 1 1/2 hours.  It helped, but only while I stayed there.  The pain makes it very difficult to walk, move, and do all those little mothering things I want to do.

Bless his heart.  I slept (or at least stayed in bed) until noon today!  I even called my urologist and managed to get an appointment for Monday morning.  Hopefully there will be something the urologist can do that will help ease this pain.  My right kidney has been bothering me for several months.  I wonder if there's a stone in there again.  I don't think it's an infection, but I'm sure they'll test and culture to make sure.

This round of pain isn't as severe as some are.  I am able to avoid the pain by sitting still and putting something warm (wish I could find my heating pad) over my bladder.  Even just sliding down and holding my laptop on my lap helps a little.  I wish I wasn't running to pee three times as often as usual.  The getting up is as obnoxious as the peeing, since it hurts to get up and walk.  But seeing how life with IC is for many women (and the occasional man) I know I don't have it as bad as I could.  Not even halfway.  For that, I am grateful.

Blahs

I don't know if I'm sick (with something acute, I mean) or worn down, or having med issues, or what.  But I'm barely making it today.  My bladder feels like one tensed up knot filled with battery acid.  My muscles through my whole body feel wrung out and tensed up at the same time.  My right "flank" throbs and hurts (kidney area).  I'm running to pee every hour or so.  My eyes can only be dragged halfway open.

Even with all this going on I have managed to unload the dishwasher, drive Middlest to a before-school activity, make sack lunches, get Oldest off to the bus, made homemade bread, wrote a note to the kindergarten teacher apologizing for not making it to help out today, got Youngest off to her bus, and managed to get a nap in for about half an hour before going back to the school to hear a school choir program.  Then back home to referee snack time, homework, and chores, put dinner in the oven, and start counting down the hours until I can go to bed.

I'm exhausted!

I believe I'll be contacting my urologist tomorrow (I keep putting it off) to ask for a new med to help manage what I assume is an IC flare.  I barely have the energy to sit here and move only my fingertips to type this.

On a side note:

Husband has been so helpful emotionally lately!  I dropped  by his office to swap cars the other day (mine was full of dinosaur bones and I needed space to pick 4 kids up from school).  I thought I was putting on my "healthy face", but as I walked in he stood up and wrapped his arms around me and whispered "I'm sorry!".  I asked what for and he told me he's sorry I hurt so much.  He could tell even though I was trying to just power through.  I didn't realize how much I needed that understanding!

Love and Pain

My sweet, patient husband just sent me a link to an article about loving someone with chronic pain and illness.

Love, marriage, and disability -- four ways to keep your relationship strong despite chronic pain and disability

By Peter Rosenberger

Published February 19, 2012  | FoxNews.com

More than twenty-five years ago, I married my wife shortly after she survived a horrific car accident. To date she has endured more than seventy operations (fifty on my watch, so far), the amputation of both legs, and nearly $9 million dollars in medical bills. Through this continuing ordeal, we have had countless hospital stays during birthdays, anniversaries, and holidays …including Valentine’s Day. 

Raising a family and keeping love alive in a marriage with a spouse who is constantly sick or in severe pain is an extreme challenge; one with many casualties. 
The divorce rate in couples with a disability in the family hovers around 90% and relationships with a disability or chronic medical condition face significant pressures on the love holding the marriage together. 
Relationships that endure through these types of challenges seem to all share four characteristics which allow love to transcend the brutal circumstances.  

1. Separate the person from the painHow do you keep love and passion thriving in a chronic medical catastrophe where the suffering is not limited to a short-term illness or injury?
Different from Alzheimer’s or dementia, marriages impacted by one spouse living with a broken or diseased body while retaining complete cognitive awareness encounter a different set of emotional trials for the marriage. The challenge for the healthy spouse is to maneuver through the minefield of medical issues, attending to each of them, but never losing sight of the suffering person’s heart.
The challenge for the sick or injured spouse, even from a wheelchair or while in severe chronic pain, is to recognize that matters of the heart, though often less demanding, are just as important (if not more so) as the needs of the body. 

2. Keep living, even while hurting It is appropriate to acknowledge our hurts, but, after more than a quarter century of living with someone who daily suffers from severe chronic pain, I have witnessed the difference between “living with pain” versus “living while in pain.”
As Christ hung on the cross in excruciating pain; (the word “excruciating” is a Roman word invented to describe the horrific pain of crucifixion), He acknowledged His own agony, but never wavered from the relationship between Himself and His Father, His mother, the thief dying next to Him …and even those who crucified Him. He lived while in pain.
To love someone IS to live …even while burdened with extreme agony and challenges. 

3. Love even while hurting Everyone hurts at some point; even super models and professional athletes suffer physically at times. Using sickness or feeling bad as an excuse to disconnect from the needs of close relationships sets a horrible and destructive precedent that seems to say, “I can be focused only on me whenever I feel bad.”
Experience teaches me that life-changing and transcending love abounds when we choose to turn our eyes to others …particularly (and peculiarly) while carrying great burdens ourselves.
We cannot escape the relentless difficulties in this life; we do however, have the opportunity to embrace each other, even while in pain, and discover love …and romance, are not dependent on external circumstances, but instead reside solely in the heart. As the wonderful Rodgers and Hart song stated so well:
My romance doesn’t have to have a moon in the skyMy romance doesn’t need a blue lagoon standing by;No month of May, no twinkling stars,No hide away, no soft guitars.My romance doesn’t need a castle rising in Spain,Nor a dance to a constantly surprising refrain.Wide awake, I can make my most fantastic dreams come true.My romance doesn’t need a thing but you. 

4. See the heart, not "the chart"For caregivers I offer this advice: if the love of your life struggles with chronic disease or injury, take a moment to see beyond the medical chart, the broken body and the pain-filled eyes…and connect to the heart of the extraordinary person who captured your heart.
And for those suffering, look deeply into the eyes of the weary soul who looks after you, quietly hold hands together, and bask in the love you both share; a love that is defying the odds. 

Peter W. Rosenberger is the president of Standing With Hope, the non-profit prosthetic limb outreach organization that he and his wife, Gracie, founded in 2002. He is also the author of numerous articles and served as the writer for his wife’s book, "Gracie: Standing With Hope" (Liberty University Press 2010). Peter is currently working on his next book in which he offers encouragement and practical help to caregivers of chronically ill individuals.

I am indeed grateful, and feel extremely blessed, to have a husband who has never made me feel less for the difficulties my health issues have brought to our lives.  He has never complained of the expense (usually close to, and once exceeding, $10,000 per year) and has promised me over and over that he does not care about the cost as long as all that is necessary has been done for me.  He reminds me to take my medications, picks up prescriptions on the way home from work when I forget to,   He kindly lets me know when he suspects I may need a change of medications.  In fact, he almost always notices when something is not working well enough before I do (especially with depression medications).  

When we were dating I remember he told me once that he needed to change jobs.  He was working construction and he really enjoyed his work.  I asked him why, because I wanted him to do what he enjoyed.  His answer was "because I'm in love with a girl who has some medical problems.  It is extremely rare to have a construction job that provides medical benefits."  He continued working construction, but by the time we had been married for a year he had left his construction job and we were doing all we could to find a career for him that would address his own needs (which include accommodating ADHD) and which he could qualify for, despite not having a college degree.

After years of working and searching we finally ended with the job he has now.  It was a long search and involved a lot of failures and difficulty.  He went back to college, but difficult pregnancies made it very hard to have him gone all day to full time work and full time school.  Finally after a long path he got his job and has quickly worked up to a position he is very good at and in some ways uniquely qualified for, as an individual who understands and enjoys web programming but also is a competent manager and works well with clients.  In terms of health issues, he also has very good health insurance.  And ever more important in some ways: he has an understanding boss.  I know that any time on any day if I really need his help, I will have it.  His boss and the others he works with would all be very understanding of my needs.  Usually I do not need on-the-spot care, but there have been a few times when it was critical due to physical or emotional issues I couldn't not handle alone.  Having that support from his work has been invaluable.  

I am glad that we have enjoyed life together.  When we were told I had cancer a couple of years ago we worried and researched, but mostly we joked.  I'm afraid we may have shocked some people by the silly cancer jokes we told about our specific situation.  He sat by my bed every day of the week I was in the hospital after open abdominal surgery.  He gently lay me back in bed after each walk around the surgery unit.  He brushed my hair and made me do everything the nurses told me to do.  My memories of that time are very hazy, thanks to the huge amounts of pain mediation I was on, but those things I remember.  It was a tender time. 

One last point regarding love and chronic pain: My husband never complains about anything that I have no control over.  When my pain is such that I cannot get the dishes done he gets out the paper plates and carries on.  When I cannot emotionally handle making a phone call he either does it or sits and waits patiently while I gather the guts to do it.  Sometimes he asks to see if I do have control over something, but if I cannot fix it, he accepts it along with everything else.  I do work to make the burden light on him, but there is such a lot of it that it is still a large load.  It has been a partnership to manage my health and I'm glad to have such a good teammate.

Eosinophilic Esophagitis / Gastritis / GERD: my stories

A few years ago I started to experience pain and difficulty when swallowing.  It gradually got worse.  First it was just thick sorts of foods that I had to chew particularly well in order to swallow comfortably.  Then it was all solids that were uncomfortable if I took bites too large, didn't chew well enough, or ate too fast.  Finally even fluids were getting hard to choke down.  Some meals were okay, then I'd dig into something and end up gagging or feel like I'd just swallowed a whole egg in the shell.  I had an upper endoscopy (esophagogastroduodenoscopy -- EGD -- scope of the esophagus, stomach, and duodenum) which showed that my esophagus was narrowed and had some suspicious markings in it which show up in cases of eosinophilic esophagitis (EoE).  I also had Schatzki's rings -- a batch of rings of scar tissue where acid washing up my esophagus from the stomach damaged the lining of the esophagus.  My poor stomach also had a hiatal hernia poking above the stomach.  Biopsies were taken to determine my eosinophil count, which ended up being normal.

My swallowing became somewhat easier after the dilation and eating became more comfortable.  After the dilation I began to finally feel symptoms of reflux (GERD -- Gastro-esophageal reflux disease) and was grateful for the prescription of acid blockers which I have been on ever since, and will likely be on for my entire life.  Since things still were not wonderful a few more tests were ordered up.  I went through a monometry study (motility study to determine the efficacy of my swallowing action).  It is a very uncomfortable test in which a thin strip of metal is threaded through the nose and down into the stomach.  I had to sit very still for several minutes while the testing strip warmed to body temperature.  Finally there were two technicians in the room, one to give me directions and hold a cup of water with a straw in it, and another to keep an eye on the computers.  At determined intervals I was directed to take a small sip of water and the metal strip would gauge pressure as it was worked down my esophagus.  The test showed that some percentage of my swallows were not as orderly as they ought to be.

The next test, to see how my esophagus would work with thicker foods, was a modified barium swallow.  I got to eat a spoonful of a food such as pudding mixed with barium (not as tasty as you might think) and have an x-ray type machine keep a video type view of how the food progressed.  To top it off, I was sometimes standing, sometimes sitting, sometimes tipped backwards all the way to lying flat and even a little beyond so they could see me swallow while leaning toes over teakettle!  This test appeared to be normal.  It was determined that I just had to eat carefully.  Small bites, chew carefully, eat slowly.  I was never a fast eater, now I'm positively glacial sometimes!

Over the next few years I gradually returned to having food impactions.  As it became difficult to swallow again I returned for another EGD.  I have now had several EGDs (I've lost track of how many).  In most they have done at least a gentle dilation.  In many they have done biopsies to test for EoE (esophagus), H.pylori (stomach), and celiac sprue (duodenum).

Eventually the EoE biopsies showed up positive.
Every time the H.pylori biopsies have shown up negative.
Every time the celiac sprue biopsies have shown up negative.

EoE: I first went through a long round of topical steroids -- a swallowed medicine that would coat the esophagus with steroids to take down inflammation.  After several weeks I had no better relief of my symptoms, so we discontinued that course of treatment.  Next I went through allergy testing.  I discovered I'm allergic to cats, feathers, and a number of local trees and weeds.  I seem to be borderline allergic to wheat and allergic to soy.  The next move was an elimination diet.  I spent two months off of diary and the second month also off wheat.  It was a long two months!  Since that time I have had symptoms of intolerance to diary and now take a supplement daily to help my body digest lactose comfortably.  Other than that, there was no noticeable change.  In the end I started just keeping track of my diet and corresponding symptoms.  I avoid large amounts of soy, such as tofu or edamame, but don't generally have trouble with trace soy or seasoning such as soy sauce.  The only other food I've noticed is that if I eat too much potato then everything gets stuck.  The worst possible "food" is french fries from McDonalds.  They are a combination of potato, soy and dairy (plus who knows what other additives) and the combination, especially if eaten too quickly, will make the rest of the food I try to eat that day get stuck in my throat.
My current course of action is to avoid major soy, use caution around potatoes, and treat seasonal allergies as too many allergens at once seem to flare up my sensitivities.

H.Pylori: I have had moderate to severe pain in my stomach from time to time.  Discovering my lactose intolerance was a big step toward calming the stomach pain, as was diagnosing and treating GERD.  H.pylori is a bacteria that is present in certain stomach infections that cause most cases of gastritis and is easily treated.  Unfortunately my gastritis is not the easily cured variety.  I have evidence of chronic inflammation.  My flares have become less frequent, but sometimes for several days in a row I'll go through a great deal of Maalox or Tums.  I have never determined the exact trigger for my gastritis, but I wouldn't be surprised if anxiety also lends a hand.

Celiac Sprue: This really leads more into my story of IBS, which I'll address on another day.  I have managed to have many symptoms of celiac disease but each time they try to verify the diagnosis they come up empty.  I have since discovered that fibromyalgia can lead to many of the same symptoms of Celiac disease, except that avoiding gluten will not fix the problem (*sigh*).

It has been just over a year since my last scope.  The last one was another test to check my stomach out.  I had several cases of severe stomach / chest pain which were so bad they landed me in the emergency room.  They ran EKGs to rule out heart problems and did CT scans with swallowed and injected contrast to discover any anomalies.  Every test came back normal.  In considering my symptoms and all things related I am quite sure that these are actually episodes of esophageal spasms.  I have not addressed this issue with a doctor since that epiphany.  I have had to ride out a couple of these episodes at home since then, but if they continue I may someday try to track down how to best manage them.

Interstitial Cystitis: My Story

Thanks to the miracle of facebook, I have been able to join various groups and have learned a lot about how my symptoms of various illnesses are the same and different from others.  Every body reacts differently to health problems, and some health issues vary even more widely.  Interstitial Cystitis (IC) can vary from occasional discomfort, to pain severe enough that the patient will opt to have their bladder removed!

The hallmarks of IC are urinary frequency and urgency, and bladder pain.  It is often associated with other health issues such as IBS, vulvodinia, and fibromyangia.  By "associated" I mean that a lot of people with one of those issues have one or more of the others also.  There is no connection yet found between them, but it seems more than coincidental.  Pain with IC often spreads into the whole pelvic region, shoots down the legs or into the back.  Having such severe pain at the center point of your body quickly overwhelms you.  

A few years ago I had a great deal of pain in my back.  It seemed to be associated with my kidneys, especially the right side.  I went to my doctor and he ran a urinalysis and diagnosed a severe urinary tract infection (UTI).  (Please note: I always take antibiotics exactly as prescribed and finish them all.)  The infection persisted so I returned and tried another antibiotic.  The doctor wanted to see me back after a couple of days to retest and make sure the infection was all the way gone.  At that point the infection was cleared except for blood in my urine.  A while later I was tested again and still had blood in my urine.  I was referred to a urologist and by the time I got in there I had another UTI!  The urologist also did a kub (kidney-ureter-bladder x-ray) and discovered 5 kidney stones.  No wonder it hurt!  I was treated for the uti and as the kidney stones persisted I was scheduled for a lithotripsy.

Lithotripsy is a procedure in which ultrasonic shocks are sent into the specific area where the stones have been discovered.  The waves break the stone/s into tiny fragments which then pass easily.  It is somewhere around 97% successful.  Well, I'm just special.  A few weeks after the procedure I continued to have pain and blood in my urine.  Another kub showed that only about 1/3 of the stone fragments in my kidney were dissolved.  When these stone fragments persisted (and I believe there was another infection or so around this point too) they scheduled another lithotripsy.  The second procedure was done and in "only" 6 months I was finally rid of all the kidney stones!  Since then I have had several more UTIs and a few other stones, but ones that cleared out on their own.

I continued to return to my urologist when UTI symptoms presented.  A few times I came in and despite severe pain was told that my urinalysis was clear.  So finally a cystoscopy was scheduled.  Cystoscopy is a procedure where a catheter in inserted and the bladder filled with saline, then a tiny video camera inserted to view the inside of the bladder.  Rather than being a smooth pinkish color the inside of my bladder was spiderwebbed with tiny red lines.  At intersections there were pinpoint red pricks.  With my symptoms these signs (known as glomerulations) are indicative of IC.

Treating IC is tricky.  There are a few options but none will work for everyone.  It's a lot of trial and error to  hopefully find something that will work.  Most end up working with a pain management doctor.  Treatments range from pills to catheterization with a "cocktail" of topically applied medications.  Diet often plays a role in managing IC symptoms, and all acidic foods may have to be removed from the patient's diet.

I am pretty fortunate in my case of IC.  I can go for weeks at a time with  no symptoms at all.  Diet does not seem to affect my symptoms.  I have not yet tried any medications besides an occasional dose of prescription Urelle which works as an antiseptic and anelgesic on the bladder.  It also turns your urine neon blue, which is entertaining ;)  My case of IC is very much stress related.  Almost any time I feeling a lot of stress I get a flare in my bladder.  I can go from fine to curled in a chair nearly in tears in a matter of just a few minutes.  Sometimes these flares last only a couple of hours, but usually a few days.  

My usual treatment for my IC is to manage my anxiety and take Urelle and a good hot bath.  Heat is relaxing to spasms that can occur in the bladder.  I now keep a bottle of urinalysis test strips.  When I feel symptoms of an infection I test myself.  If the strip shows signs of an active infection or if the symptoms continue longer than a usual flare, I'll go to the doctor (as the doctor's office is much more accurate), but usually it just reassures me that it's an IC flare, not an infection.  

My worst flare was a little over a year ago.  I was too cold (being cold tenses my body up and can lead to spasms in the bladder) and under a great deal of stress as I'd gotten lost walking in the dark with one of my young daughters.  The ground was icy and I was wearing high heels.  All of these things contributed, but I could not "give in" to the flare!  We were in a hurry to get to a safe, comfortable place.  I had to walk in baby-steps as all my muscles froze up in spasms.  After we finally got the evening resolved and got home and warm my pain started to relax.  It took a few days to finally resolve, and I was having to urinate a dozen or more times every day instead of just a few times.  

IC is one of many 'invisible' diseases.  This means that if you walked past me in the grocery store or even lived next door to me you may never know or suspect that I have to organize my life and anxiety around this disease.  So please excuse me if I have to run quickly to the restroom or if I prefer to sit under my heated blanket rather than go for a hike in the cold.  

Fibromyalgia: my story

Fibromyalgia is my most recent diagnosis.  Technically I was diagnosed with fibro about 12 years ago.  I had severe joint pain in my neck, shoulders, wrists, and stiffness in my lower back.  I had testing done, including some genetic testing, and was tried out on a variety of anti-inflammatories and sent to physical therapy.   The physical therapist was incredibly helpful.  The rest didn't do much.  The physical therapist said from his experience with what I was experiencing it appeared that I had an impingement in my neck.  This made a lot of sense.  The way pain started and was treated all made sense with an impingement.  I still am cautious of certain activities which can cause dizziness and pain.  But the fibromyalgia diagnosis was a joke.

Fast forward to a few months ago:  I had been on Cymbalta for a few years to manage depression.  Either my depression changed or my response to the medicine changed and it was not doing all that I needed.  So I was changed to a different antidepressant.  Over the next few weeks I developed intense, deep pain throughout my body.  I though I had a virus, or perhaps had hurt myself somehow.  I thought maybe I was just overtired or needed more exercise.  Well, some of these may have been true, but I finally called my doctor and asked what might be going on, as the pain has escalated to a point where I couldn't sleep and was getting out of bed feeling run over by a steamroller.  He gave me the number for a few rheumatologists he recommended and said he'd like me to be evaluated for fibromyalgia.  It took two weeks to even get ahold of a rheumatology office (due to office vacations, holidays, strange hours, nobody answering the phone, nobody calling back...).  When I finally got through I discovered it was MONTHS before I would make it onto their short waiting list.  I checked with every rheumatologist I could get to that is covered by my insurance.  Nobody would even talk about seeing me in less than several months.  Frustrated, I called my doctor back.

When I saw my general practitioner again he said that there is a shortage of rheumatologists and since I coudlnt' get through, he would just work with me.  He tested the classic trigger points and I nearly leaped off the exam table.  I hadn't been sure I would react at all... but wow.

Cymbalta, which I had been on before my symptoms became so marked, is one of the medications used to treat fibromyalgia.  The new antidepressant I was changed to, though, is not compatible with Cymbalta and we didn't want to change me off something that was working for my depression.  So the great medicine trial began.  I was started on Savella.  Within a couple of weeks the top 20% of my pain was managed.  I was able to sleep most nights.  I wasn't in such severe pain, but still in constant pain.  So I returned to my doctor and he increased my dosage to the maximum amount.  Within a couple of weeks my pain reduced further.  My pain was manageable most days without a lot of effort!!!  That worked great for several weeks.

A couple of weeks ago my pain started to increase again.  I initially thought it was just a flare related to a sinus infection I was fighting.  I finally asked my doctor for a couple of pain pills so I could sleep.  If I do not get at least 9 to 9 1/2 hours of sleep each night my pain increases dramatically.  Pain keeps me from sleeping... so it creates a terrible downward spiral.  The pain persisted.

After spending two days at level 7-8 pain I called my doctor again.  This afternoon I saw him and we made another medication change.  I have now added a muscle relaxant up to 3x daily to my medicine cabinet.  I'm 32 years old and take 7 pills a day.  Well, 10 now I guess.  If this doesn't help within 2 weeks I'll go back and we'll try something more.  I am praying to avoid constant pain medication.  I don't like the extra layer of fog and other side effects of pain medications.  I guess we'll just have to wait and see.

On a happy note: Last night I made it to the basketball with DD!  I got a padded folding stadium seat to go on the hard seat there and it made a world of a difference.  Since I'm not riveted by basketball I also brought my crochet project along :)  It is distracting to me and helps block some of the attention to pain.  We made it through the entire game and DD was VERY grateful.  It was a great mommy-daughter date and I'm glad I did it.

Fibro Pain Scale

Fibromyalgia Pain ScaleBy Carol J.Johnson Level 1: You experience very minor pain in parts of your body. You don't have to take any pain medications and you can do your work with no problems.
Level 2: The minor pain has increased to dull aches in some parts of your body. You don't have to take medication and you still can work as usual but you don't want people 'in your face'!
Level 3: Your minor pain is strong enough to get your attention. You resort to Over the Counter medications. You are getting grouchy now.
Level 4: Now you can only ignore the pain if you are involved in activities at work or home. You are taking more Over the Counter medications but they don't last long. You begin to cut back on your activities in favor of just sitting down.
Level 5: You can't ignore this pain for more than an hour, even with Over the Counter Medications. You cut back of all activities except the most important ones. Work is possible, just barely.
Level 6: You simply can not. Ignore your pain for even a few minutes. But with prescription pain medications you have limited functioning abilities.
Level 7: This level of pain is the kind that keeps you awake at night, makes it hard to think and act. Your prescription medication only dulls the pain for a short time,. You limit your activities in order of importance. You really can't work well.
Level 8: This is serious pain. You don't want to do anything or be bothered by anyone. You have taken so much pain medication you are unable to fully concentrate on anything, Work is out of the question.
Level 9: Very serious pain here. You can not concentrate on anything but pain. You should not do business transactions or make any important decisions because of your limited mental state. You might want to give some one Power of Attorney. You can not go to work and you shouldn't drive a car. At this point you begin withdrawing from the world around you.
Level 10: Pain has made you totally unable to function. You don't want to deal with or talk to anyone. Even with narcotic pain medications you are still in horrible pain. You go to bed or go to the emergency room for any help you can get.

I don't remember the last time I was below a level 4.  I have tried every over the counter pain medication but it doesn't seem to make a difference.  Mostly it makes my stomach hurt, which isn't worth it.
Today I'm at a level 8 and trying with all my might to get something done.  I'm supposed to be chaperoning my 4th grader on a choir trip to sing the national anthem tonight.  I have a few pain pills, but if I take one I will not be able to drive, so I cannot take one.  She has been looking forward to this for over a month and I will not let her down!  The fibromyalgia pain seems to be also irritating my IC pain.  Or perhaps it's the anxiety from the pain that's kicking my bladder into major pain.  Whatever, I cannot move any way.

I was diagnosed with fibromyalgia back in October of last year (4 months ago).  I was started on Savella and it helped.  At first it took probably the top 20% of pain off, and I was grateful.  I talked to my doctor and he increased my dose to the max allowed dosage (doubled).  At that point it cut my pain by 70%.  It was wonderful.  Not pain free, but manageable.  For some reason the pain has been ratcheting up lately.  I don't understand why, and I'm very frustrated.

I have been pushing myself to put on a "healthy face".  I don't want to sound like a whiner either.  I am frustrated that when I apparently look or sound "good" people assume I also feel good.  That's not true!  I have tried to not shove my pain in other people's faces, but then I get frustrated when they don't take it into account.  I realize that is illogical.  And I don't want it to be my defining feature, so I should be grateful they are able to forget about it.  But what can I say, I'm full of contradictions.

This certainly isn't well written.  It is not well thought through.  This is simply what is on my mind today while I'm in such pain.  I need somewhere to vent these thoughts and feelings without adding the guilt of whining.  Balance is my goal, but it's hard to get there.