Dear Family Member,

**I had a wonderful bit of a discussion with a family member who is just graduating with a Master's Degree in something that leads to psycho....something or other (I never can keep those things straight.  Basically he'll be a therapist as I understand it.) It was a short chat that was interrupted.  He was (understandably) concerned about the number of medications I'm on and how the side effects may be making the issues worse.  Since he only ever sees snippets of my life through facebook statuses, text messages, or family email it is easy to only see the handful of colorful pills and not understand the day-to-day grind behind my health choices.**

We were having a discussion that got interrupted, but I wanted to clarify a few things since they're things I deal with every day and in your field you're bound to run into people like me, and far too many are not able to find a therapist who understands. 

A better description of fibromyalgia is this: Think of the last time you had the flu and had those whole body aches and pains and couldn't stand to even be touched.  Now feel that pain 24/7 and set that pain as the low level and increase it from there.  Add in "fibro fog": think of when you wake up abruptly in the middle of the night and cannot align your thoughts or remember what you're doing.  Except make this pop up randomly and frequently throughout a normal day.  When I was still on Cymbalta and didn't have symptoms every day there were several times I got severe pain, usually when I was overtired.  The best one I can try to describe is the long-bone pain.  Consider if the long bones in  your leg had a vice at each end and twisted back and forth in opposite directions.  As long as I'm on the top dose of Savella and the muscle relaxants this pain is much less common, but I still get breakthrough pain on occasion which is why I have a couple of pain pills on hand.  When I know I can take something if I need to it's a lot easier to put it off for another hour or two.  I have kept pain/sleep journals for a while and discovered that getting 9 1/2 hours of sleep is ideal for my pain management.  If I get insufficient sleep my pain increases significantly which makes the pain worse which makes sleep harder, etc.  When I was diagnosed I was getting perhaps 3 hours of broken sleep at night because I was literally in too much pain to sleep.  Now that I get better sleep at night I'm much better able to be awake and "with it" during the day.  

 Fibromyalgia and Interstitial Cystitis are both known as "invisible" diseases.  Each is typically diagnosed after eliminating all other options so it is not uncommon to go through months or years of tests, flares, and mystery before finding a diagnosis.  Just having a diagnosis is only part of the solution.  Symptoms can vary widely, and no two people respond exactly the same to treatments.  When you take all this into consideration I expect you can anticipate the emotional issues that come along with these problems.  These issues are not widely known but can be completely debilitating which means that many people end up without the emotional support necessary to go through this process.  It is really easy to second guess yourself and wonder if snide remarks about laziness or weakness are right and it's all your fault for being sick.  I'm extremely grateful that I've had [Hubs] to get me through these things.  His mom dealt with fibromyalgia for decades before there were even any treatments for it and he has seen how much pain and exhaustion comes with it.  I have fallen apart many many times frustrated that maybe it's my "fault" that I'm in so much pain and have so little energy.  I cannot imagine how it would be to go through this with someone who doesn't understand.  It has taken me many years just to learn to accept my body!

I was able to go through the first few years of IC without daily treatment.  The long term antibiotics and 3x daily numbing pills are a recent addition and I hope to be off the antibiotics in a few months and hopefully soon taper the numbing meds off to only during flares.  I just have to get my flares back down to where they were a couple of months ago.  Usually I am able to manage my IC flares with relaxation techniques and hot baths.  The inflammation can spread through not only the bladder, but the entire pelvic area and urinary tract.  I've had pain in my right flank for several weeks now.  It's not another kidney stone (they checked, since I have a history of those too), but is pain from the IC.  The lining of my bladder sloughs off and leaves me passing fragments of tissue and blood.  It is all the "fun" of a severe bladder infection and more, but without a simple remedy.

 Even people without family history or previous history of anxiety and depression very commonly end up with one or both in dealing with chronic illness, particularly invisible illnesses.  Nobody is going to look at [a family member with Chrones Disease] and expect him to just "man up" or "get over it".  Nobody is going to look at someone with a broken leg or strep throat and expect them to "think" themselves better.  (I'm not saying this is what you have ever said, but this is not an unusual attitude to face).  It's one thing when you can show test results, imaging results, scars, or familiar diagnosis and someone can understand, at least intellectually, what is going on with your body.  It's quite another thing when all they see is someone who has gone through tests, doctor's appointments, a variety of familiar and unfamiliar medications and still have no answer.  The easiest answer at that point is to assume that the person who "can't do anything" must be making it up, doesn't really want to get better, or just likes the attention.  Naturally this simply increases the guilt and worry of the person who is already sick which just makes it worse.

 My personal issues with anxiety are very much geared toward social anxiety.  My body reacts to many social situations with a full fight/flight/flee physical reaction.  The good therapist I worked with for a while those several years ago gave me a lot of information and techniques which have given me a foundation to build on in dealing with my anxiety issues.  One irony of social anxiety is that while therapy can be helpful it is also extremely difficult to seek and follow through with because it is putting yourself in the most vulnerable situation you can imagine.  I have attempted to work with a couple of other therapists over the years and they were terrible.  I'm sure everything they did was by the book, but for one thing it *felt* like it was by the book.  They did not listen to what I already understood and started at square 1 with a sort of arrogance that just got my back up.  One in particular was so set on walking me through the analysis of the likelihood of a worst case scenario happening that he left me with no confidence in my ability to deal with the dreaded scenario.  When everything went wrong the first thing I wanted to do was rub his nose in the fact that what I had worried about HAD happened (despite the unlikelihood) and he was wrong.  I never went back there.  For me, the computer offers a buffer and makes it much easier for me to deal with social situations.  I have time to think about what I'm really trying to say, an opportunity to re-read and take back words before they're even shared.  It has also given me an opportunity to connect with people who DO understand about these unusual health issues I have been dealing with for so many years.  I have been able to broaden my social interaction a great deal over the last few years.  

One book I read that has helped me a great deal is actually a parenting book.  Most of our sisters / sis in laws have read it too.  It's called "Raising your Spirited Child".  It has some great information on parenting, but I found a lot of insights into myself though reading the book as well.  One other thing I picked up that made sense to me is the discussion of people who are particularly susceptible to the emotions around them.  Once I put myself into the shoes the author wrote about I could see how well this applies to me.  On one hand it makes me a very effective teacher and group leader.  I am able to pick up on the mood of the group and the needs of specific individuals much faster and more easily than most people.  It was something that was often remarked on when I was going through my teaching practicum.  On the other hand, this means that any sort of uncomfortable situation sticks to me like glue.  I seem to gather up guilt, fear, and other negative emotions and feel them all myself, even when it is someone else who is going through them.  No wonder I get so uncomfortable in social situations!  Understanding how my body is processing reactions is helping me to deal with them and learn to be more effective.  

Over a year ago I decided I needed to be more positive about my physical health.  I figured I was being negative and focusing too much on what was not working right.  I made a goal to keep track of every day that passed without pain.  I figured in this way even when I was in pain I could look at a cup and stones or some other little marker in it representing good days and appreciate that a better day must be coming.  That cup was never filled.  It was never even started.  I learned something very important which has allowed me to deal better with my health issues: I do not go a day without pain.  That's the honest truth.  Once I accepted that I fought it less.  I now appreciate the days when I am able to manage the pain on my own and still accomplish things.  I am grateful for the days I am not limited by extra medications.  I am grateful for the days when I keep track of everything I wanted to do without having to double check my calendar every hour.  I can hope that someday my pain will go away, but I no longer am expecting it or waiting to start something after the pain is gone.  I am learning to accommodate my pain as a part of daily life instead of expecting it to just stop.  If I think about it I can recognize that right now I've got pain in my neck, shoulders, mid-back, right flank, bladder, and an ache in my legs.  I'd say this is a "good" evening.  On the standard pain scale of 1-10 I'd rank myself at a 3 or 4 right now.  I don't have a day in memory that was below a 3.  Pain at level 5-6 for days on end is very common.   

I recognize that your recommendations that I take fewer medications and seek therapy over chemistry is well intended and honestly given.  I would love to be off my medications.  I am learning reasonable boundaries for my body, though, and that is not a reasonable goal in the shorter term.  It is a goal I hope to reach someday, but cannot be now.  I will likely never be off some of my medications, such as the acid blockers for example.  I have enough scarring, furrowing, and other mechanical issues with my esophagus that allowing acid to continue to damage it could be not only painful or uncomfortable, but dangerous as well.  The old adage that "when it rains, it pours" is very true with my health.  It is not surprising to end up with multiple problems at once.  It is a delicate balancing act to keep my body healthy.  As soon as one part is disturbed it throws off several other things as well.  Even in working to improve my health this is common.  I worked with a chiropractor / alternative medicine doctor for several months (I had to quit going when I broke my ankle) and he admitted that the sudden health issues that were popping up were likely because the things we were doing were strengthening my body to a point at which it could fight long term problems.  I have not been back since then because it is expensive, far away (well, half an hour), and keeping up with the various supplements was exhausting.  I do intend to eventually return to him or some similar doctor at some point because there were some good things I got out of it.  Similar to the therapist though, I learned some good basics which I continue to use to improve my overall health.  It isn't past and forgotten, but is still being used in my daily efforts to keep my body glued together.  I just have to prioritize my life on a case by case basis.  

Every time I go to any one of my doctors I pray before hand as hard as I know how.  I pray that I can accurately discuss the issues, that the doctors can understand what I mean, that together we can determine what the best course of action is, that we can work toward a long term goal of living as normal a life as possible.  I have seen the blessings of these prayers as I've researched to learn what is going on with my body.  There have been times that things have finally fallen into place and times when the diagnosis doesn't make sense as I look further into it.  There have been changes in how we address an issue and times we've decided to accept what is going on without intervening.  I put my health in the hands of the Lord and am grateful for the blessings of modern medicine as well as other techniques.

I have seen some incredible blessings through my health issues.  There is simply nothing like having your 7 year old daughter come to you in the morning, give you a gentle hug and a kiss and ask quite seriously how you are feeling.  My daughters have gained a level of compassion and tenderness that it incredible. They are more patient with me and my problems than I could ever have imagined.  I have also had the opportunity to help a variety of people who are dealing with health problems and don't know how to handle the situation.  I am grateful that my experiences can help others better understand their own or at least offer some comfort that their pain (physical and otherwise) is understood.

I apologize for this being very long.  There is a lot that goes on "behind the scenes" here about my health that nobody sees.  Once I was referred to an internist because so many things were suddenly wrong.  The doctor took one look at me, one look at my medications (this was probably 4 or 5 years ago) and declared that I looked too healthy to be on so many medicines and that I'd feel better if I went off them.  She never looked in my throat, ordered a test, read my files, or anything, just declared that i was "fine" and needed to quit being sick.  At this point I had just conquered a dangerous infection in the bone from an untreatable ear infection.  I had just slogged through a dangerous spike of depression and finally re-balanced my medications.   I had gone through Bell's Palsy and was on several medications to stop the infections I had going on.  I was referred to this doctor when I had started having severe chest pains with numbness and all those bad signs.  I was sure it wasn't cardiac and just reported to the doctor I was seeing (who was really mad at me for ignoring it) but to have this other doctor not look at a thing that was going on and declare me "healthy" without looking at what was really going on was a real slap in the face.  It is really difficult to face judgement from others when you know they don't have half an idea of what you're actually going through.  (I recognize that in your own way you and [your wife] know what I mean here).  

Even with my social anxieties I deal with situations best when I can lay it out and discuss it or look at it all in one place.  The support groups have helped me figure some problems out and have really helped keep my issues in perspective.  By no means do I have a worst case scenario in any of my health problems, I just have a lot of individual (though likely associated) issues that sit around like dominoes and all fall down when one gets wiggled too much.  I recently needed to vent about my health problems but was tired of misconceptions and other pressures.  As a result I started [this] blog.  I've been writing on it for several weeks now and it has given me a place to vent or rant about whatever I'm going through.  Nobody even has the blog address at this point, it's just a place where I can figure things out. I take my health seriously and address each issue from as many perspectives as I know how.  My body is unique and I am doing my very best to handle it responsibly.  I do have to admit, though, that I look forward to trying out a perfected version someday :)

There are so many people I know who are suffering from invisible "something".  Whether it's an unseen health problem, unseen family problem, unseen emotional problem, they desperately need help.  I believe you can be the sort of therapist who can approach these things with compassion and honesty.  I can tell you that it means a lot to simply be trusted and believed.  

I hope you get home safely to your family in the morning. ...You have a delightful family! Hug your babies for me!

Love,

Me