The Insecurity of Chronic Illness

My father once told me that by the time he was forty, he finally felt like he'd "gotten his legs beneath him." Meaning that he finally felt like he knew what he was doing, had this "Life" thing pretty well figured out, and he was able to propel himself forward from his own efforts. I can tell you with a chronic illness, I have no such knowledge. Just because I felt one way on Monday doesn't mean I'll feel the the same way when I wake up on Tuesday. The instability of that makes me feel incredibly insecure, and I know I cannot reliably propel myself forward. I have no legs beneath me, and on Monday, that manifested itself literally. i woke up and couldn't walk.

This wasn't the same as waking up with one of your legs asleep. That happened today because I was sleepwalking last night and fell asleep in a weir position. But yesterday was not that at all. When my leg is asleep, I can still put weight on it and the limb pretty much responds, even though I can't feel much and have pins & needles. What happened Monday included NO pins & needles, the leg wouldn't respond at all, and I couldn't put weight on it, period. I would fall. It lasted for about a half hour and then magically went away. It was terrifying, suddenly not being able to walk for no reason and with no warning. I found out this happens to my Unicorn Sister too. I talked with her more and found out she has Narcolepsy as well!

My body has a will of its own, and that will is stronger than my own. I do not feel safe in my own skin. Who would? I don't feel like I can get my legs underneath me in real life, how could I possibly feel that way metaphorically? How can I feel like I've figured anything out, when the rules keep changing from day to day? My body is unreliable... how can I possibly propel myself forward? Gods, I felt more secure in my twenties than I do now, and I was horribly unsure then! I didn't realize how much I had to be sure of, and now that I've lost it, I realize how much I took for granted when I was young.

It's time to regroup and reassess. My Unicorn Sister and I cam up with an idea, and we're praying it works. I'm going to go see a doctor in Arizona where she (my Unicorn Sister) is also a patient, and see if the doctor can draw some conclusions based on similarities between us. Not being able to walk was terrifying. Knowing that my Unicorn Sister has also experienced this symptom and the Narcolepsy.... since it's going on with both of us and we both have the same rare autoimmune disease, there's got to be some breakthrough we can manifest having both of us seen by the same doctor! My appointment is in the end of November, however, so there's a long wait for any answers.

In the meantime, I must take what life dishes at me and deal with it the best that I can. It means that day-to-day I have no idea of what I'm capable of: sometimes I'm an amazing, shining star, sometimes I'm the tail light of a septic truck that flickers on road bumps. I can't tell you which day is going to be which. I can only do my best when I am able, an rest up when I am not. I really don't have a choice in the matter! lol

Planet Invisible Disability

What if one day you woke up on a different planet?

Medical Bullies

I woke up today and I couldn't walk. It made me realize something. I'm being bullied. Despite my current apparent kidney health, I am not wrong that there's a fatigue issue going on, one that is clinical in nature. And I was never wrong about my symptoms that led to the diagnosis of Autoimmune Hypophysitis. What I'm experiencing here is a form of gas-lighting. They're telling me, "Yes, the results are abnormal, but we think the cause is the medication, not a disease..." Really? You think I was perfectly healthy, went on a medication, and now I'm sick as a result? Hold on here, that makes no sense.

I was first diagnosed by a Cardiologist in California who was looking for the exact *opposite* result in my bloodwork, because we were looking for causes of tachycardia. That was reaffirmed by an Endocrinologist who DID NOT believe I had what the Cardiologist found. My adrenal glands shut down in the presence of the stimulating hormone. I wasn't just low, my Adrenal Glands responded in a way that they should not. Additionally, he also didn't think my pituitary was involved, but agreed to test it because, and I quote, "I was wrong the first time!!"

I remember at first, I didn't want to be on prednisone, and voluntarily took myself off it for a month, but my endocrinologist showed the labs to me. She said you need to be on prednisone in no uncertain terms, and if not, you're risking your life. This was after all nerve blocks to try and control my migraines had ended, when I was receiving care in Everett Washington, before I had any pain relief from the headache clinic.

It was reaffirmed in Seattle again when I moved south and picked up a new Endocrinologist. There was a time under her care when I knew I was over-medicated, too, and again, voluntarily came off my prednisone. This time, however, the labs came back normal. It was then that we scheduled me for the neuroendocrinologist, or what I like to call a specialist to the third power (or specialist³) because you have to go through two layers of doctors to reach this guy. We knew that there was really only two reasons for hypopituitarism to go away: 1 - childbirth (and I've never been pregnant, even when trying - a clue itself) and 2 - autoimmune.

We had an MRI taken in this time, right as I began to get symptomatic again: I was nearly fainting after standing and just taking a few steps. This was a harsher version of when I first showed symptoms, when I was nealy blacking out from climbing two sets of stairs. Stair-master exercise machines were the worst. Just a few seconds on the machine, and my vision would tunnel, colorful or black & white spots would appear in my vision, and my whole body would start to go limp. This time, just three steps would bring me to my knees. The MRI came back "dirty" --- there was clear indication of lymphocytic invasion of both my pituitary gland and stalk. We finally had our smoking gun.

Why these people don't want to believe me now is baffling, but I need to stand my ground. I see my new GP next week, and hopefully she'll take over prescribing my prednisone, because my old GP refuses. How they can look at an abnormal result and prior evidence as to the cause of these abnormal results and say, "Nah, you can come off all your medication and you'll be fine!" is criminal to me. To threaten my life in that way boggles my mind.

I had reduced my medication the past few days to see if I could go off long enough to be able to have the tests show this again, but when I woke up this morning and my left leg didn't work, I decided against this course of action. It was the strangest thing. It wasn't "pins and needles" as you would feel if you'd lost circulation that way. No, there was just no feeling, and if I tried to put weight on it, I just fell. It collapsed underneath me. It was the most terrifying experience I've had to date.

I need to be at my medically best when I see this new GP. I have a new symptom which warrants extreme concern. I am not a happy camper at all. I am not well, but we can figure this out and manage it. However, I need physicians who are on my side and helping me search for answers, rather than denying the reality that is in front of them and placing obstacles in my way!

Since it's not kidneys, there should be something we can do to manage the fatigue. Since I'm experiencing new debilitating symptoms, we need to look at what else is going on in my body.

HEAVENS WORK WITH ME, PLEASE!

All I want to do is be a constructive member of society. Is that too much* to ask?

*Yes, quite possibly.

These medical bullies need to get gone.

Patient Non Grata

I wish I could say I did something wrong. I wish there was something in my behavior I could correct. I wish there was some sort of misconduct on my part for which I was being reprimanded. But there's nothing. I've done everything right. I've followed all the instructions. I've done everything I was told to do. Yet my GP is still washing his hands of me, and has no one he knows who does Internal Medicine and takes Medicare that he can refer me to.

Really? You work in a low cost clinic, and you know of absolutely no one else in the entire state that also does what you do? You suddenly completely forgot how to use Google? Excuse me while I find that a little difficult to swallow.

Meanwhile, my test results continue to come back abnormal, only to then have the doctor tell me, "There's nothing wrong here. You should stop taking your medication. That's what's making you sick."

Really? Because I remember being a HELL of a lot sicker BEFORE I was put on medication. And bakc then when the test came back abnormal, they put me ON medication, and --- you're not going to believe this --- I felt and got BETTER! Holy $#!+, what a concept!

I don't understand what's happening here. I don't dare leave this state because this is the first time in 10 years that I have pain & nausea control. But now it looks like I may be screwed anyway, because these people don't want to see or treat me.

I will call a highly-ranked GP tomorrow and see if she'll take over care, but I'm reasonably terrified.

Mother of Gods, what am I supposed to do?

The Loneliness of Illness and Pain

This is one of the best blog articles on #chronicillness I have seen in a long time. Written by Wayne Connell, Founder and President of the Invisible Disabilities Association (IDA), it starts out with phrases commonly heard by folks who are disabled when others find out about their status: “You’re lucky you don’t have to work!” “You’re just giving up!” “You need to get out more!” Things that still make me wince just to read them. Things that still very much hurt my feelings when I hear them today, even though I know them to be patently false. But that's never stopped anyone from saying them.

Wayne continues with a hypothetical situation asking people which is better for a broken leg or surgery: a going on a hiking trip, or using crutches & rest? It may seem obvious what the answer is, especially based on our own behavior: rest and crutches are the better idea. Otherwise, as Wayne explains, there would be mountain trails outside of hospital rooms instead of wheelchairs & gurneys. "When dealing with a broken leg, it [usually] heals and the person returns to life as usual." (Read the rest of the article here: http://usodep.blogs.govdelivery.com/2014/05/09/the-loneliness-of-illness-and-pain/)

But people who have an illness that hasn't healed, that can't heal, who are in the very throws of illness at this very moment are treated as if they're not sick at all.

On the other hand, for many living with ongoing illnesses, “as the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer, Ph.D., a leading authority on grief and loss.

Another thing people think is that because we the patient are still having daily issues, that means that we haven't been about to "move on." Their thought is, "Wow, you have that and you're still alive? That's amazing. Don't you see how that's amazing? When you talk about your illness, you're right... but the only person you're hurting is you. I'm just so glad you're alive and I think we should focus on that. You just have to believe you can get better! You know just because you get a diagnosis doesn't mean it's a death sentence. You shouldn't believe everything your doctor tells you. I believe you can beat this!"

And when you try to explain that they've misunderstood what's going on, it only sounds like an excuse. They, of course, can see that you're still unhappy, but they've now convinced themselves that the reason for your unhappiness is a consequence of your own stubbornness. They then have a perfect justification for stepping back, or walking away, guilt free. We're only doing to ourselves, right?

They can't imagine a world where you get sick and it never goes away. They can't imagine not having control over simple things like going to the bathroom. After all, they mastered that as toddlers. Adults don't have those problems until they're old and decrepit anyway, and by that time, who cares? They fast forward through all those medication ads. They know we have hundreds of drugs to treat the same thing and even drugs built just for his pleasure. We're in the golden age of pharmacology!

Every medical riddle has an answer and a treatment that solves the problem---I watch House! The only people who keep having problems with their disease are people who aren't following their doctor's instructions and doing all they can do to maintain a healthy lifestyle! I don't need to feel upset about this at all. God is in heaven, and all is right with the world. Look at all these people who work hard and beat cancer!*

They can't imagine how little medical science actually knows. They can't imagine that their doctors probably have never had a class on pain; the chief medical complaint everywhere, always. They can't imagine there are symptoms for which we have no good treatment, no good source of relief for patients at all. They can't imagine that you could have possibly exhausted all options available. There aren't people in wards waiting for the medical breakthrough that will save their lives. We're past that!

Oh, but we aren't.

And what they cannot imagine is that our problems today might actually be problems from our success! Yes, we're not dead. But achieving that can leave us more scarred and more crippled than before our near-death experience. My experience with MRSA is a perfect example:

I got a surgery to end the 4.5 year migraine. That surgery caused an antibiotic-resistant version of staph to infect my face. I lost a good portion of the skin off my chin and on spots around my face. I still have the scars, some of them show up as white dots on my face. My chin is covered in tiny scars and it feels funny when you rub your hand over it.

That infection nearly killed me. The antibiotic left my veins so inflamed that they almost had to put a line into my heart to continue to deliver the antibiotic to me. That inflammation destroyed the small fibrous nerves that exist throughout my body. Anywhere the antibiotic touched, it burned. It burned the infection out of my system, and it burned everything else, and especially those delicate little nerves. Those don't grow back no matter how much yoga you do.

What fixed the migraines only moved the pain to other parts of my body (most conspicuously, my hands and feet) and left me crippled for another 5.5 years while we figured that one out.

Now that we've figured it out and have it manageable to a reasonable degree, an entirely unforeseen development has occurred, with no known source. It is not connected to anything that we already know of, because this wasn't in the forecast! And since we don't know the source, I can do nothing to stem the tide. I must now return to my doctors to start the investigative diagnosis process all over again.

It's very much like people's misconceptions about cancer, as I *'ed before... I'll leave it to XKCD to explain this one, as they did it best. (Used with permission.)

When we complain, we're not complaining because our illness is something in the past that we keep dragging into the present. No. For so many, it's something that's right here, right now. Not every symptom in the world is controlled, and as you can probably tell from some of those ads, many cause side-effects as bad as, if not worse than, the condition they're trying to treat! So if someone has to go to those lengths do try and manage what they have going on, don'cha think it might be... Oh, I don't know... Serious?

This is not to badmouth the people who really do mean well. However, those people are generally easy to spot. They say things like, "Wow, I didn't really consider that. This is new information for me so when you put it like that... You've given me a lot to think about, I'll have to take time to mull this over." Or even, "I really am trying to help, but this isn't easy so I don't have any quick answers for you." These are all reasonable answers. I already knew we were playing "Life" on "Level: Advanced" and my medical doctors are already at their limits, so I can accept that.

So please, if you hear that someone has gotten sick and can't get better, try blaming the disease and supporting the patient, rather than blaming the patient and supporting the dis-ease. We will be eternally grateful, even if you don't have any answers for us besides, "Man, F*** your disease." Profound respect for what we're going through is worth so much, that sometimes that expression of sympathy alone is enough to make us feel better.

Thank you for understanding.

From Health, From Left Field

When this all started, I though I had only one demon to slay: pain. It started in my head, and I had a world of a time convincing everyone that what I was suffering was real. It took a few years, but then finally I was listened to and given the proper care I needed to vanquish it. I was able to do that, only to have that battle leave me broken in a way that I could not escape long-term opioid control. That also took a few years of convincing doctors, but finally I received proper treatment to control that problem as well, and in that month, I was able to return to work. Only another problem was brewing, one that I had no way to know was developing, nor one that I could take steps to avoid. So now, out of left field, I have Stage 3(a) Chronic Kidney Disease, and they can't tell me why.

Let me tell you a bit about the difference between fatigue and clinical fatigue. Most of the time, our bodies tell us when we're sleepy, and we get the urge to sleep. But what if that urge didn't go away no matter how much you slept? A marathon of sleeping 20 hours a day for weeks has no impact. The urge never goes away. Even if you think you're alert and working, what could actually be going on is you're asleep and dreaming that you're working, and you won't notice you've fallen asleep, until you wake up, embarassed, because you realize what you just said was dreaming jibberish and now your co-workers in the meeting are looking at you funny. (Yes, falling asleep, mid-conversation....)

Stimulants, beyond caffeine, are right out (and even caffeine is suspect). Just the "mild" stimulation of an SSNRI was enough to send my resting heart rate into tachycardia, and medications that would help my ADHD are out of the question for the same reasons, only worse. And what's crazy is how much novicane my dentist needs to inject me with to numb the nerves.

Someday, far off in the future, some doctor is going to read this over an go, If she only knew she had Oblech Disease and given the proper course of treatment, she could have lived a normal life!" But until that day, I'm just going to be a medical unicorn whom everyone scratches their head at, because all they've got is horse studies, but clearly I'm not one of those....

I was on the phone with my mother and I asked her if she had picked me in a field, or had me developed in a lab, because I was just tired of all these mysterious health issues. Her voice dropped to a low and ominous tone, "Someday when you're ready, I'll tell you..." I snapped, "Don't you dare do that to me!" And we both burst out laughing.

Maybe there is some way to understand it all. Maybe not soon enough for it to matter to me, maybe just in the Nick of time. I have no way of knowing, and there's no sense worrying about it. I have bigger problems to deal with, right here, today, that I'll just have to learn how to deal with this. I know I can develop coping mechanisms eventually. I was able to do the same with my inability to take ADHD medication. It's just another thing.... It's frustrating that I have this much manage on my own, but I'll find a way.

Just watch me ;^)

[UPDATE]
It's not my kidneys! Thank heavens!

Although now we're chasing down why I'm falling asleep like this. I'm going to go in for a sleep study... We're thinking possibly narcolepsy.

Pain Induced Insecurity

No matter how successful I get, #pain can make me feel lower than worms. I'm not talking about the migraine mood swings I've mentioned before. I'm talking about the feelings that really intense pain causes in an of itself.

The first question pain always asks is: "Why is this happening?" If there's a satisfactory answer (example: you're sitting on your leg and your foot has fallen asleep) then appropriate action is taken (you change how your sitting and rub your leg) and the pain resolves itself. Greater injury requires greater courses of action, of course, but most pain serves a purpose. They believe even migraine pain, since it's the 2^nd prevalent disease (second only to cavities) world-wide, serves a purpose. But no one has a good answer to the question why we get migraine pain. So it should be no surprise that when that pain occurs, without a satisfactory answer, what's left in its place is a gaping hole of insecurity.

Did I do something wrong? was it something I ate? Was it something I didn't eat? Was it my sleep or lack thereof? Is it the weather? Am I coming down from stress? Have I take my medication? Is the medication working? Would it help if I were in a cold, dark, quiet room? Or should I be in the shower with hot water and ice packs? Should I sleep or will lying down make this worse? HOW DO I MAKE THIS STOP???!!!

Usually followed closely by:

Why is this happening to me?

Which of course leads to:

What did I do to deserve this???

The answer is: Absolutely nothing.

But of course it doesn't feel that way. It feels like Hell. It feels like unholy torment on Earth. And when there's not good answer why, all that's left is a feeling of unjust despair.

That's why it is SO important to have a distant shore on which to set your sites. A distant shore is a goal, something on which you've set your sites. It has to be something for you and for others, so that other people need you, and you want to do it for yourself and your own self-esteem as well. It could be seeing your kids graduate, or health activism that you do online, involvement in your religion, or in a peer-support group (if you can't find one, start one!). Whatever works for you as a far and distant shore, make one.

The result is something to fight for, a reason to tell the insecurities, Hush up now. You're only temporary. You will go away when the pain is gone, and hopefully that means soon. In the meantime you mean nothing, because I have PLANS, see, and I'll be right back at 'em when you're gone.

But, oh, having just having come from that experience I can tell you I felt lower than a ketchup stain ground into a Manhattan sidewalk by a million pedestrian commuters. The only benefit is, it's Manhattan! lol Seriously, though, I'm so glad I had something to look forward to once I got well. I really like the thought that I didn't have time for this because I had too much to do! After so many years of being crippled and incapable of production because of pain, it's nice to have a shore I know I will be working towards when I'm well again.

When I reach that shore, I rejoice, celebrate, relax, and then once fully savored, I set another distant shore. ;)