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Posts Tagged ‘chronic illness’


I’m looking for more.  I need more. I never have enough time to do the things I love to do. So, the only thing I can really do about that is to complain.  😀

The passage of time is something I am acutely aware of. There is something about becoming seriously chronically ill to realign your sense of time, particularly when you have literally no idea about what is around the corner.

As in, will I be healthy enough to do what I want to do, when I want to do it?  How much time will it take?  Will I need a nap? Will I be alive a year or more down the road?  😆

Really.  Seems like “time” is on my mind a lot, and yet I am finding it slipping away in large chunks. My days are flying by. My weeks are flying by. Before I know it, summer will be gone, and I’ll be looking at the necessity of getting organized for schooling again.  Fortunately, my plan is already in place, so I won’t have to spend a lot of time planning, because it’s already been done.

I have noticed that with our intense heat (it’s been 100+ for more than 2 weeks; tomorrow will be 108, and we will finally get some respite supposedly next Tuesday when it hits a much-anticipated low of 98), I am spending a lot more time in the garden watering.  I’ve done another planting, which means keeping the ground moist while things germinate. Seedlings don’t do real well in intense heat, so the continued watering is necessary.

When you are out watering at least 3 to 4 times a day in addition to keeping an eye on chickies, time slips away from you pretty quickly.  That’s why I need more.  I’d be happy with another 2 hours a day.

On second thought, I am not sure 2 hours more a day would really cut it.  Hum. Maybe I should get rid of the clock completely……  😆

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In this case, I mean that literally, and not figuratively.  I have pain. As long as I can remember, I have had pain. Right now, I am trying to untangle the pain.

Let me explain.  Being chronically ill with an autoimmune disease – which causes pain – and also being a physically active person (to combat said pain – I need those endorphins!), I am firmly in the camp of “It’s going to hurt anyway, so I might as well exercise.” Something my last batch of doctors said has given me pause. That comment was something along the lines of, “It’s time to start treating the symptoms, and see if we can rid of the pain.”

Two months and a new medication (an NSAID) later, I still have pain.  This is no surprise.  I’ve spent time on anti-inflammatories before, and the prescriptions I’ve taken haven’t ever done anything for the pain. There are pain relievers that are also NSAIDs, and for treating my pain, these kinds of over-the-counter medications seem to work better than just straight the NSAIDs.

The pain I’m thinking about today is my hip pain. December of 2009 was when I first noticed the lingering hip pain.  At first, my one hip only bothered me at night, in bed, while laying on my back.  While initially it hurt to lay on that side, after that split second or two of pain, it started to feel better, which led me to wonder if compression was helping. Another position that brought relief while laying on my back was to kick that leg out sideways from the hip, resting the foot on the inner thigh of my other leg, or somewhere in that general area (like tree pose, while laying down, without the arms over the head).

Observation: There was no pain at that time, while running.  The *only* time I had pain was when I was in bed, trying to sleep.

I should share:  I am a runner.                     

Well, I run.  I don’t know if that actually makes me a runner or not. 🙂 At my peak, between child one and child two, I was running 15 miles a day, between naps. During the morning nap, I ran the first 8 miles.  The afternoon nap gave me time to run the last 7 miles. That all changed, of course, once child two arrived and there was no going to the bathroom by myself, let alone pounding out miles on the treadmill.  😆

After child two, I got into yoga, and did several hours every day. This was something, I learned, I could do and still see, hear and interact with my children, even whilst attempting shoulder or head stands  and other inversions. I seriously considered getting certified and opening a studio, but the work that required would include separation from my kiddos and a lot more time away from home than I had in mind.

These days, I’m home four mornings a week, and I run/cross train 5 miles those days.  I do power walk portions, depending on how I’m feeling, and to give a periodic rest if I need a break from the pain. While the pain is nearly constant, striking does give a spike in the ow-factor. I’ve contemplated adding days or other exercises on the off days, but have not done so because of the hip pain.

I was diagnosed with several bulging discs in my lower back nearly 20 years ago. It took a significant amount of time, but eventually, the tingling and other pain from my posterior down the back of my legs finally went away.  This was a condition that was exacerbated by sitting, so being on my feet and active meant I could continue to function and do pretty well. Through the years, I’ve continued to have spells off and on of the tingling and pain. I’ve had days when a backache kept me curled up in a ball in bed. I’ve had days where I felt pretty good. Until I got sick 3 years ago. It’s been pretty much downhill ever since.

I know that compressed discs in your back can cause all kinds of things, particularly hip pain. Because this pain doesn’t seem to be completely disease related, I wonder: Could it be a problem with my back causing the hip pain? I know people who have been disabled for several months by hip pain that was resolved with very good results through chiropractic manipulation.

After the initial onset of pain, I continued to run. Some days I had no pain. Other days I had a little bit of pain while running at higher speeds and while laying in bed.  Some days, my other hip also had pain. While it was not the same kind of pain and was much less infrequent, it was, on occasion, much more intense.  Go figure.

Over the course of the year, the pain increased to points where it was constant pain; throbbing nearly all the time and radiating down the outside of my thigh. This is where I’m at now. Sometimes it is constant, intense pain. Sometimes it doesn’t hurt as much, or while I’m sitting.  Sometimes the pain doesn’t increase until I run at higher speeds. It always hurts when that side of my hip/leg is touched, even lightly.

Observations: Almost immediately after the onset of pain, there has been noticeable lump in that area. That area hurts <more> to brush against it in addition when being pressed. The pain radiates nearly down to my knee. I don’t have right side hip pain nearly to the same degree, and that pain seems to be focused on the front part of my hip, as opposed to the side. This stuff in my hip was palpable to the docs, who took turns feeling it and wondering what it might be.

Because of my crazy schedule this time of the year, I allowed myself to take nearly two months off.  I wanted to see if resting would help, in combination with the new medication.  My conclusion: not so much.  I don’t know that the new medication has done *anything* to help anything, but it has for sure exacerbated other symptoms. While the hip pain hasn’t been as consistently intense, I don’t feel there has been enough improvement to say either resting or new medication has helped.

“Life as usual” starts back on Monday. That means, for me, one of the first things I do in the morning, after checking email, is get on the treadmill. I warm up with some yoga (in particular, hip openers and gentle stretching) and do about 20 minutes more after running to cool down. While I am looking forward to getting back to my exercise regime, I am not looking forward to the prospect of increased pain.  Which may or may not happen.

At my one last appointment, it was suggested that I might perhaps have some bursitis in that hip. X-rays revealed no degradation of the joints, which was good. But the comment – that the doctors made about treating symptoms – has caused me to apply this thinking to causes of the pain. Is there more than one cause? Could the pain be *not* disease related?

That line of thinking logically led to running, and injuries caused by running. Could this pain be caused by running? There are a lot of hip injuries people have resulting from running. One of those is ITB Syndrome, or Snapping Hip Syndrome. Now I’m left scratching my head. The snapping hip usually causes the bursitis in the hip, as I understand it. 

I have never heard my hip snap, nor have I ever had the sensation that it was snapping. And while I am plugged in and listening to music while I run, my kids, who are always in the same room with me while I’m running, have never mentioned such a thing to me, either. This diagnosis does not seem likely to me.

As I run around in circles with research, I’m left wondering. If I look at this pain and think in terms not of being disease related, I’m left with two possible options: back/spinal related or bursitis.

I’ve seen the suggestion that doing certain Pilates exercises can help these specific pain points. I’ve taken quite a bit of time to look into these exercises for runners, but am unable to find good direction (like those with pictures) on which specific home exercises to use, and when and how many – before running, after running, how many reps, etc. without spending a bunch of money. Money is important to me.  I’ve spent several years blowing a bunch of it on doctors without getting results. I am loathe to throw more money at something without having an inkling of potential success or promise.

So what’s my plan? I’m going to add to my daily routine more yoga poses/Asanas aimed at strengthening and stretching my legs and hips. I’m going to try to add a second session of those poses before bed and see if it helps either the sleep or running situations any. If that fails to give me any relief or tangible benefit after a few months, I’ll probably end up seeing if the chiropractor can help. I wish I could find the cause and have a good, *free* and non-invasive treatment.  I’m not ruling out a shot of cortisone, but that would involve finding a doctor who could diagnose such a thing, and I am not sure I want to get back on that hamster wheel.

And, I’m hoping that if you are reading this article, that perhaps you may have some insight and/or helpful information to share.  Please feel free to comment and share with me!

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Was a pretty rotten year. While I hope 2011 will be markedly better, I am not holding my breath.  I see so many with enthusiasm for the new year; happy celebrations and looking forward to a “clean slate.”  A clean slate? How does one get such a thing?  Where do I sign up?

On the last day of the year, I woke up well past 9 am, which is a rare occurrence for me.  In a busy house, there are usually children arguing or dogs barking or any combination of noxious, sleep-prohibitive noises. But this morning, after getting up to see what the dog was barking at in the girls’ room at 4 o’clock in the morning, I actually managed to fall back asleep and stay that way, well past getting a jump-start on productivity.

“Aaaahhhhhh, ” I thought, “Maybe today I’ll write on the healing properties of restful sleep that gives one’s soul respite.”  Drinking my morning tea, I thought of any other number of topics, and came to realize that the laundry was piling up in my room, and in the room as well. And that being in such a state was counter-productive in getting a handle on the stuff (from yesterday’s post), so it would make more sense to put off the writing and get to doing something with tangible results.

I had great plans for yesterday, but alas, as typical of my life, it didn’t quite go as planned.  I didn’t get into the pile of “unseen” movies.  And the packing up of the Christmas stuff didn’t get totally done.  Today didn’t go as planned, either.  I didn’t get the stuff out to storage, although I did brave the crowds at Wal-Mart and had plenty of time to think about writing my reviews on the relatively new do-it-yourself-checkouts that were causing mayhem and terribly long lines. Tonight, though, I am going to kick back and watch the movie I was going to watch yesterday.

Unlike so many others that I know, I don’t have a lot of excitement for the new year.  We haven’t managed to stay up for the last several years to watch the ball come down, and going somewhere to drive home with all the drunks has never appealed to us.  So home we stay and to bed we go.

When I look back on 2010, it was a year of frustrations, most of which come from being chronically ill. As I look forward to 2011, I can’t help but anticipate more of the same, if today’s mail is any indication. Medical billing is broken, and is a source of deep frustration and never-ending stress for me. It still amazes me how much they can bill you for things like blood work.  They can bill to draw your blood; to send your blood somewhere else; then to test the blood at the other place; to read the results of the blood work tests, and then bill yet again to give *you* the results of those tests.

Have a surgery or procedure done that is bi-lateral?  But then they only do one side? Or only part of the <larger> procedure?  Nevermind that – don’t be thinking you get any kind of discount because you won’t.  Nope, they are going to stick it to you just the same. Here again, is another amazement at all the little pieces parts they can charge you – charge separate for the anesthesia, for the anesthesiologist services, which are not included in the thousands of dollars you already paid for the surgery; charge for materials/supplies, etc.  And then don’t forget the lab work from the surgery – this is more pathology that qualifies for the charge-for-every-step-we-can-think-of.

I have insurance.  Which I am immensely grateful for, because otherwise, I sometimes feel like a bullet in the head would make far more sense. I have learned that no matter how hard you try to play by the rules and follow your insurance’s guidelines, there is going to be someone doing something regarding your medical care that is not “in-network” which then requires you to pay more.  A LOT more.  Let me share a few examples.

Say you have a single hospital in town and for a reason, like a child requiring stitches after regular doctor hours, and that hospital is “in-network.”  Because you don’t want your child’s wound to bleed uncontrolled all night and risk infection, etc, you take the child to the emergency room, to this hospital, which is the only one available to you for 200 miles in any direction.  To this hospital, which is IN NETWORK. 

You get billed for all kinds of the things, like the privilege of walking in the doors (this from insurance, which doesn’t apply to the deductible and is only waived if you are admitted).  You pay for hospital services, which include being seen by someone on staff and medical supplies.  Then you get another bill, from the service that provides the ER doc.  Are you as confused as I am?  Didn’t I already pay for the doctor? 

Nope.  Because you are in a town that doesn’t have ER doctors on staff (except for the idiot who runs the department, but is also employed by the doctor supply agency), the agency provides the doctor services for a fee, to be paid by *you*, the unsuspecting fool who has no choice but to go to the ER. The kicker is  – THEY ARE “OUT-OF-NETWORK.” So, you play by the rules and go to an in-network hospital, who provides, as your ONLY option – doctors who work for an out-of-network service.  And the insurance, of course, pays them the out-of-network price.

How do I, as a conscientious consumer, do any better to keep costs down and follow the rules when stuff like that is going on???

Now, if that visit includes x-rays, you’ll be charged for the x-rays, of course.  Then, the x-rays will be read by another doctor there, who then tells the ER doctor the results.  That’s another bill from that doctor, too.  You hope they are in-network.

When this happens, you can usually call and talk with your insurance company, and I have never, to this point, not had them pay the in-network fee.  I have also written numerous letters of complaint to the charging doctor’s service (the one who is out-of-network but providing doctors to the in-network facility); and expressed that not joining the same networks as the facilites their doctors are working in and then expecting the unsuspecting consumer going to the emergency room to pick up the slack in cost is fraudulent and unethical.  If your doctors work at XYZ which is an in-network provider for company A, company B and company C, YOUR COMPANY should be a participating provider and also in-network with companies A, B and C. 

I mean, really.  What am I supposed to do?  Go to the only emergency room available to me and ask the ER doctor his network status while blood is running all over? Puh-leeze.  “By the way, don’t restart my heart if you aren’t in-network.  I’ll wait the 3 plus hours to get to the next nearest hospital, because those doctors should be in-network.” 🙄

I have called and written letters to the hospital, sharing the situation and sharing my perpective that *their*providing practices should not screw over the consumer making use of the only available IN-NETWORK services who then use OUT-OF-NETWORK providers!  Seems the hospital is over a barrel, because they are small and “need the doctor service.”

I had great hope that this kind of stuff would end once we got a second, physician owned hospital. It is in-network, and most of my in-network doctors use this facility for procedures and surgeries. For certain, it’s a MUCH nicer facility.  And not just because it’s new. The people are nice, in every department. They treat you like a real person with a brain, which I greatly appreciate.  In talking with my insurance company, as it turns out, they too, use the same doctor service for the ER.  You know, the out-of-network doctor service. ❓ ❓

What I have also learned, to my great annoyance, is that when you have unplanned surgery there and they send your stuff out to the lab, the lab isn’t in-network!!  Here again, I ask:

How do I, as a conscientious consumer, do any better to keep costs down and follow the rules when stuff like that is going on???

*sigh*

The first work day of the new year – the one that so many feel is a “clean slate” – is primarily going to consist of me calling insurance again. After I get done with insurance, I have the thrilling task of calling another hospital conglomerate (one that is 200 plus miles away; one direction) that has my one set of my specialists there.  I need to find out if a new charge is for the doctor calling me on the phone to give me my lab results, or if they are totally messed up, given that this bill came to my husbands first name with my first name as his last name. While I am getting used to be calling Mr. ______, this one with Hunny Me as the billed name is a new one for me.

That is another thing I find frustrating. It’s a reminder of the mess when I was there the first time, where the one part of the conglomerate -the one that took all my information initially – billed me just fine, but the other part of the conglomerate couldn’t find me listed with my insurance at all and therefore billed me the entire mutiple-thousand dollar(s) amount.

I am tired of the stress and frustration that comes from these things which are out of my control. I am tired of playing the game the right way, only to continue to have issues and trouble that ultimately would cost me mega bucks to ignore. It’s not healthy to have this kind of constant stress and the feeling of being completely overwhelmed that comes with it.

I would *love* to have a clean slate.  I would *love* to have a shred of optimism that so many others have with a new year, or a new month. I’d settle for a new week, even!

As this year come to a close, I can look back and wish to be able to close the cover, never to revisit. There are some things, though, that keep on “giving,” even when we don’t want to accept the “gift.” I know this is my struggle; one I didn’t wish or ask for; one I can’t control or really even impact much.  I don’t fall prey much to asking “why me” and having pity parties, but sometimes, I reach my breaking point where I cannot take any more. I think I am there.

I am not one who can walk away and decompress and just not think about things like this. I don’t relish the fact that I have a battle that I can’t wage for 2 more days. I’m going to have to think about this all weekend, and know that I have to deal with it on Monday. I’m a “deal with it and move on already” kind of person. I don’t generally tend to think that there is anything to be gained by sitting and waiting to address something. Do it and be done with it already!

It is hard to have “hope” for a new year, when you have left-over stuff from the last year to have to deal with.

Lest you think that I am depressed and need that shrink, this is my reality.  These are the kinds of things I deal with on a regular basis. This kind of stuff is the dirty diaper of life.

Overall, I still feel blessed. I know that in many regards, I am very lucky. I have a roof over my head. We have steady income. I have a loving family. My family is generally pretty healthy. I have insurance. Most of the time, I can function reasonably well. I recognize that many including those that I count as my friends – don’t have some of these things. My heart breaks for them, and my prayers go to them. ♥♥♥

In my effort of trying to keep on keepin’ on and staying on track, I am now going to do more laundry. And then I am seriously going to try to watch the movie I didn’t get to yesterday. My goal this year, as in years past, is to try to manage the stuff. 😀 I’ll keep you posted and let you know how that goes. 😆

May you all have a blessed new year, filled with good news, good health, and good relationships!

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