Picnic with Ants

My life disABLED with Chrnoic Ilnnesses, it just IS. Taking one moment at a time.


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Surgery Date, and Vertigo

I will be having my hip replacement on April 14th.

I admit I’ve had my surgery date since right after my last post, but I didn’t want to make a post that just said my surgery date, so I’ve been procrastinating.  I’ve also been busy getting ready.  There’s really a lot to do.  Had to get blood test to make sure I’m not anemic.  If I had been I would have needed to start a drug to build that up a month before surgery.  Since I’m not, I still need to start iron supplements 2 weeks before to reduce the chances of needing a transfusion.  I’ll soon be having the post-surgical mobility people come out to help set up our home so I’ll be all set up after surgery.  For now there are certain things we know we need to do and are trying to get those things done.  (like lift a chair for me, and the bed…)  There’s just all kinds of things I have to do……

Aqua Therapy www.physiotec.ca

Aqua Therapy
www.physiotec.ca

Aqua Physical Therapy has been going well.  It is magical.  I get in the water and suddenly I can walk with no pain.  I go from not being able to put weight on my leg without excruciating pain, to no pain!  Amazing.  Some of the exercises to hurt, can’t avoid that, it’s so different than normally being in physical therapy when you feel better and better as you go along.  My pain is getting worse.  We understand why, of course, but it’s difficult.  However, I am getting stronger.  I can do more repetitions on some exercises, can walk further, I just can’t certain exercises any more, and we have to change other exercises . She has mentioned how amazed she is at how much better my balance and vertigo have been.  I noticed it too.  When I first started going to the pool I was a woobly mess; the last session, on Thursday, I walked the length of the pool without having to have her hold on to me.  That’s huge really.

On Sunday I woke up with vertigo.  Just a moment and it was gone.  I started to move and it was back.  Ughumph.  Back to my head on the pillow and it settled down.  What the?  I tried again.  Same thing.  So, I tried moving my head on my pillow….sure enough, if I moved my head a certain way the vertigo would start, fast!  Oh it was BAD!  Head back to neutral!  Positional vertigo!  I have no idea why.  Normally when I have positional vertigo it is in conjunction with a migraine.  So I took my migraine medication.  It didn’t work.  All day Sunday and Monday if I moved my head I was spinning.  My only relief was to lie on my LEFT side.  During the night on Monday it woke me up when I moved my head the wrong way in my sleep.  I almost threw up in the bed.  ughumph!  Then I woke up on Tuesday still feeling very off.  I was so cautious, I wasn’t sure I even wanted to attempt to move my head, I decided to just go to the bathroom.  I hobbled to the bathroom with the help of my walker my head tilted to the side.  In the bathroom I held on to the sink and straightened my head.  No spinning.  Good sign.  I tilted it back.  No vertigo!  Really?  I rotated it around …very…very…slowly…no vertigo.  WOW.  Yes I’m still very wonky and feel…well…off…but I’m not spinning!  thank goodness.

What would this mean if it happened right after my surgery.   Should I be thinking about this now?  Really how can I NOT?  I know I can’t change it if it happens.  So, I have to think about it, I just do!  I need to figure out a better way to handle this situation if it happens during my recovery.  The only way that I was able to really stop the vertigo was to lie on my LEFT side.  I’m having my LEFT hip replaced.  I won’t be able to lie on that side for a while, at least not constantly for two and a half days.  I’m not going to be able to figure this out right now, but I have to think about it.  Getting up and down and keeping to the “rules” on how I can bend my hip was pretty darn impossible too.  But that will have to be done.  Hopefully that will be easier when I have a chair set up for me.  Also being able to just lean to the left in the chair but not put all my weight on that side might would work better in a chair?  If I have a bad attack and I can’t tell what way is up, or down, or left, or right….I have no balance at all….really, it is VERY hard to explain…there is no way I will be able to control how I fall in a situation like that.  I’m not just dizzy, I have no clear vision at all, what I’m seeing is like a camera that is just spinning around and around as fast as it could be….and it doesn’t stop.  I can’t tell what my body is doing.  It’s not just what I’m seeing, my body feels as if things are moving too.  When you are dizzy you feel a little off-balance.  When you have vertigo at its worst you feel as if you are being tossed around.  When I tell people I get vertigo, they often think I get dizzy.  It isn’t the same thing.   It’s funny, when I haven’t had vertigo for a long time and then I have an attack I forget just how bad it is.  Not really….it is there in my mind….but my body forgets.  It has to I think, for self-preservation.  If it didn’t I think fear would control my life.

Imagine walking in your house when it looks like this, but it is moving, and you feel like everything is moving?

Imagine walking in your house when your porch looks like this, but it is moving, and you feel like everything is moving?

As it is now, my body handles it much better than it used to.  As long as I’m in a safe place, lying down.  I ride out most attacks pretty well, thanks to my mindfulness techniques, and a little help from medication.  If I’m walking….that is terrifying.  When this first started happening my head turned the wrong way when I was coming out of the bathroom and I started spinning fast!  The walls moved, the floor moved, I grabbed the wall and held on!  Luckily Stuart was right there.  (I’m so lucky that normally when I need him most he is right there.)  At this time my head tilted to the left and the world straightened.  Oh, I had my head at the wrong angle….duh.  I knew this was positional vertigo.  Remember, living one moment at a time….without judgment.

Since this happened I think it showed me I can’t wait until it happens after my surgery to think about it.  I have to think about it now.  I am going to talk to my physical therapist, and the post op physical therapist about this.  I’m lucky because my physical therapist who works with me in the pool is also a physical therapist who works with patients as soon as they come out of surgery to help them understand the right way to get up and down and stuff like that.  She has already showed me some things so I’ve been practicing.  I think that’s a great idea, that way I think I’ll be much less likely to goof up after surgery if I’m already getting up and down the way you are supposed to.

Not long now, and I will be in much less pain, but I’ll need to be careful.  A few restriction that I think will be hard to stick to.   I was talking to a new friend who had this done for the same reason a couple of years ago, and she said that it went so easily that it made it difficult to follow the rules for as long as they say….but it’s very important to do so.  I’m going to try my darndest!  I’m really good at following instructions, I think, why go through all of this and not follow the recommended instructions?  I sure don’t want to mess up and end up having surgery again.

So, this time I think there is a bit of thinking about the future to be done.  Not really thinking about it as in, worrying, or planning it out and being disappointed if it doesn’t happen….but making plans to be better prepared.  That’s all I can do.  I’m not going to fret about it.  I will try to be as prepared as I can, that’s it.  If things still happen and I end up falling and the worst happens, well then it happens.  I will know I did all I could do to prepare.  There’s a difference in living in the moment, not living in the past, not worrying about the future….that doesn’t mean you can’t make plans try to be prepared.   However, if things go south, don’t get all out of shape, you tried to prepare, that’s all you can do.  Keep being mindful.  Take one moment at a time.  Take care of yourself.  That’s all you can do.  That’s all I can do.


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A Change.org Petition for Musicians U2 to Bring Awareness of Meniere’s Disease

wendy:

My friend at Sunshine and Chaos wrote a post I should have. As you all know, I have Meniere’s Disease…or “More than Meniere’s Disease”. Please sign this petition to bring awareness to this disease. thank you.

Originally posted on sunshine and chaos:

Image via http://www.keepcalm-o-matic.co.uk/p/we-need-your-help-please/

As many of you know, I have an inner ear disorder that forced me to stop working and eventually have to go on disability because the specialists do not have the tools to help me.

I am, sadly, far from alone in living and dealing with a disability and doctors being unable to help me get better and go back to leading a productive life.

To say that funding and research for inner ear disorders are woefully lacking is an understatement. As those with vestibular disorders know, the public does not realize how many people of all ages are afflicted with inner ear disorders.

I also believe that it will take the involvement of A+++ famous people to help bring a much greater awareness and understanding about vestibular diseases. This, in turn, would bring about more funding and research. One has only to think about the effect…

View original 281 more words


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Hip Replacement with Severe Balance Issues….this could be interesting.

Today….what I learned at my doctor’s visit, my concerns, and how I’m preparing for everything.

I was really shocked when I saw the CT scan of my hip.   Here’s a little quick sketch of what I saw:

by w. holcombe

by w. holcombe

As you can see, in late September I had a perfectly round head on my femur, it looks normal.  The CT I had taken on February 13th, showed the femoral head collapsing.  It is amazing how fast this condition has progressed.  No wonder the pain has progressed so much.  As my doctor said, I’m have a square peg in a round hole.  My leg is now shorter than the other, it is throwing every thing off.  The pain in the joint is very bad.  I haven’t talked about it, but I haven’t been able to walk much.  I can’t walk at all without a walker supporting my weight.  I spoke to a new friend who has this in a number of joints and she said this pain is comparable to bone cancer.  Wow.  I don’t think mine is that bad yet.  Some days I think it gets up there though, but not all the time.  It does ache all the time, I hover around a 7, it never goes below a 5…and that is rare…it does spike to a 10, but I’m lucky it doesn’t stay there long.  It is a very sharp pain when I move or try to put weight on it.  I can’t take narcotics.  They make me feel like things are crawling on me.  I can’t take NSAIDS because I’ve had an ulcer.  The most I can take for pain is Tylenol, and I don’t want to take too much of that, it can damage your liver.  So, I meditate, and I really baby my hip.  If I could take narcotics I could probably move around and do more.  As it is, just the trip to the doctor on Monday left me in so much pain I didn’t sleep much on Monday night, and Tuesday was so bad I couldn’t get up long enough to get myself lunch.  I simply couldn’t do it.  Luckily, Stuart had gone to work very early and came home early, so I got something to eat and much help for the rest of the day.

I got a LOT of information from my doctor.  He told me that many people could have received the same amount of steroids I did and never acquired Avascular Necrosis (AVN).  Guess I’m just lucky.  *grin*  Some people may just have a predisposition to it.  Of course, thinking back, I have had a whole lot of steroids.  He also said this is progressing fast.  There are some other treatments for this, but most are just stop gaps and you end up having to have a hip replacement anyway, and if your femoral head has lost it’s shape, like mine has, you can’t do most (if any) of them.

So, hip replacement is a GO!  I don’t have a date yet, waiting for the appointment setter to call.  I’m sure it will be a little while out, because of things that have to be done before hand.  I have a whole packet of things to be done, things to help you understand more about the procedure and things that are going to happen afterward…..it’s very thorough.  If that weren’t enough, there’s a class, yep a class to explain everything you may have questions about; the procedure, home health care, physical therapy…just about everything.  Don’t know how I’m going to sit through a class without excruciating pain, but I’m going to try.  Stuart said he’d go alone, but I think I should go.

There are a lot of people who have joint replacements, obviously, for them to have a class.  They have really thought of everything.  There will be a home health nurse that will come out twice a week to check my blood because I will be on coumadin to reduce the chance of blood clots.  This has to be monitored closely. (often they just put people on a high dose of Aspirin, but again, I couldn’t do that because of the ulcer thing) A physical therapist will be coming to our home to work with me instead of me having to try to go out to physical therapy.  My doctor said that PT is mostly just walking.  There will be post op services coming out to help set up the house for us, if I didn’t already have one, I’d be getting a walker (I may be getting a new one if they can get me one that fits in the bathroom), a tub bench, and a 3 in 1 bed side toilet.  I wondered what the 3 in 1 was, that means it works a bed side toilet, or railing to hold on to use your own toilet, or to use as a raised toilet seat.  Funny thing, I have one of these back in Durham, Stuart got it a long time ago thinking it might help when I have vertigo, but it didn’t, if I could sit up, I could go to the bathroom.  (you can’t really sit up when the world is spinning like crazy!)  I’ll also get a grabby thing to help me reach things so I won’t bend my leg more than a 90 degree angle.  Also, a special thing to help me put on my socks and shoes.  Stuart laughed, both of those things have been his job for a long time.  Due to my dizziness I can’t pick things off the floor, I was shocked that my doctor knew this!  I haven’t been able to put on my socks and shoes since September.  So this will be a relief for Stuart, and make me feel much more independent.

OH, I forgot to tell you more of what my doctor said about the surgery itself.  I will be in the hospital 1 – 2 days.  I won’t have anesthesia, that doesn’t mean I’ll be awake during the operation, but I won’t be put under a deep sleep.  I’ll have a spinal block.  So I won’t feel all icky, I won’t get sick, and I won’t have to worry about them putting a tube down my throat.  It’s kind of cool.  He told me that most people with this condition tell him that the pain they have now is instantly gone after the surgery.  How cool is that?  He said I will be sore from the incision but I probably won’t hurt worse than I do now.  He said first off there will be a lot of local anesthesia that will take a few days to wear off and that’s when the incision would hurt the worse.  He has been impressed that I have been able to tolerate this much pain without pain medication, so I think I’ll be able to do it.  However, I won’t be babying this, I’ll be working it hard with the PT.  So much more Tylenol.  Maybe a Tramadol now and then, but even that makes me feel funny if I take it too often, but I can take it every couple of days.  He said he will make my legs the same length….yay!  He said I may out live my hip replacement.  All I can say about that is…..life is unpredictable, so no biggie.  I could get this hip replacement and get hit by a bus in a week. No one knows the future.  *shrug*

I’m not afraid of this hip replacement surgery.  I really haven’t been afraid of the surgery itself.  I’m afraid of the hip replacement surgery in conjunction with the rest of my stuff.  Having a severe balance disorder with sudden vertigo that comes on without any warning could be a very big complication to my recovery.  As my doctor said, we can try to plan and prepare for everything, but this is something we simply can’t change.  It’s something we have to hope luck will be with us.

I’m already a VERY CAREFUL person.  I use a walker all the time.  I stay close to walls so if I do have a vertigo attack I have something I can grab and try to fall easy, just slide down the wall.  However, I still fall, OFTEN.  I fell the last week in such a position that if I was recovering from hip replacement surgery there is no doubt I would have dislocated my hip and possibly fractured it.  I simply let go of my walker to sit on the couch and suddenly got dizzy…..WHAM!   This wasn’t even full fledged vertigo, this was just a tilt of the world.  If I was hit with bad vertigo there would be no keeping my balance no matter how hard I tried.  I can’t tell up from down the world is spinning so fast all around.

This is my concern.  Recovering from hip replacement surgery with Severe Meniere’s Disease…or “more than Meniere’s Disease”  what ever they want to call it.  A severe balance disorder and sudden onset vertigo.

Perhaps I should get a Bubble Wrap Suit???  Too hot?  Probably so.

Stuart is going to take time off to be with me during my time in the hospital.  Of course, if he’s completely bored he can work while he’s there.  My doctor said the room I’ll be in is big and has a day bed so Stuart can stay right there.  Since I have a special diet, we can pack me up some food and they will warm it up for us there.  He said he wouldn’t trust the hospital to get it right.  Yeah, I wouldn’t either.

Stuart will most likely be able to work from home for most of my recovery period.  At least for the most difficult part. We don’t know yet, because we don’t know when things will be, or how long it will be.

Going to get our house more prepared.

Not going to worry about my balance problems and my recovery.  I can’t control the future, so no need to worry.  Just be aware and extra mindful of every step I take.  Prepare as much as I can….but worry….no.  Be afraid…no.   One moment at a time, right?

image from sayw.com/quotes

image from sayw.com/quotes

 


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Avascular Necrosis….that’s a scary diagnosis

It’s official, I have Avascular Necrosis (or Osteonecrosis) in my left hip.  What is this?  Let’s look at the word Osteonecrosis, Osteo – bone  necrosis – death.  You have to remember that your bones are living things.  They have a blood supply.  When this blood supply is lost, or disrupted, the bone begins to die.  That is what is going one with my hip.  Particularly, the head of the femur.

click on photo to find out more about osteonecrosis

click on photo to find out more about osteonecrosis

I’ll tell you more about this condition after I see the doctor on Monday.

Right now….I can tell you I have it.

I had my CT scan on the 13th.  I’ve been dealing with a lot of waiting with this whole thing and I’ve been handling it well, but I decided I’d check in with my doctor via email yesterday, just to see if he could look at my CT scan and let me know what he saw.  I was getting a bit anxious.  My pain has been intensifying, and my balance has been even worse (not just from my ears), I thought, “Hey, the worst he can do is say he can only tell me these kind of things in person.”

Within 2 hours the nurse called Stuart and told him that my doctor was out of the office, however, she got another doctor to look at my CT scan and yes I have Avascular Necrosis.  She also moved my appointment date up from March 24th, to March 2nd.

At this point I don’t know what stage I’m in, but I do know it hurts, a lot…..more than I care to admit.   There are treatments that they do try when you are in the earlier stages but, it is a very small chance that you won’t end up having to have a hip replacement.  The earlier treatments are kind of like a stop-gap.  They help for a while, but most of the time it comes back.  It sounds to me like end up doing a hip replacement most of the time.  The amount of pain I’m in tells me I may be a little bit further along than we thought, so I may not have to even worry about thinking about all of that.  My doctor didn’t sound like he was very keen on putting people though unnecessary surgeries, just to end up having a hip replacement anyway.  So, I’m looking at a hip replacement.  I know it will make me feel better, and I’m very relieved about that.  I look forward to discussing everything with my doctor on Monday and making a plan.

I won’t lie, I’m very nervous about all of this.

Oh heck, I’m TERRIFIED.

I’m afraid of having a hip replacement.  I’m afraid of Stuart having no help.  I’m afraid of getting this place ready for me to be able to get around in during recovery. I’m afraid that I will get this necrosis in other joints.  (since they think my Avascular Necrosis is because of corticosteroid use, it could show up in a different joint, normally the other hip.) I’m afraid of the pain after surgery, I don’t deal with pain medication well, it makes me itch.  I’m just scared, OK?

I’m trying very hard not to think about the future…succeeding very well aren’t I??  I’ll be seeing the doctor on MONDAY.  We will make a plan then.  I will have more answers at that time.  Me getting all worried and fretting is doing no one any good, especially ME.  So what am I going to do for the next few days until I see the doctor?

  1. I’m not going to read anything else about Avascular Necrosis, or Hip Replacement Surgery.
  2. I’m not going to talk about it….well not much.
  3. I’m going to meditate.
  4. I’m going to do relaxing things….maybe watch a movie, read some of the book I just got from the library on my Kindle…..ect.
  5. Spend some quality time with my husband, something we haven’t done enough of lately.
  6. try my best to enjoy myself….laugh!
  7. eat good and healthy food.  I made up a new recipe, I hope Stuart’s up to trying it out.
  8. Take care of ME!

If there is one thing I’ve learned about me, it’s that I’m pretty darn tough!

No matter what, I know I can handle this.


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Chronic Illnesses, one comes up, another is put on hold….

I know, I haven’t posted in a while.  I feel like all I do is the same old thing, talk about me, and how I’m falling apart….or how I’m dealing with my life and not falling apart. Hopefully the later more than the former.

Well, here I am again, writing about things going on in my life….I was writing a friend a letter and thought, I really should put this in a post.  This is part of the reason I started a blog.  It isn’t just for other people, it is for me.  To get things out, and to keep up with things.  Sorry folks, I hope you don’t mind sometimes just coming along for the ride.
image courtesy of pixgood.com

image courtesy of pixgood.com

Of course one of the main reasons I started this blog  is to let people know they aren’t alone on this Chronic Illness journey.  If you are anything like me, if you have one Chronic Illness, you have more….and things are always coming up…..so this is what’s going on right now……I’m a little overwhelmed…again.  I’m trying hard to take it one moment at a time, then some times I’ll sit down and think about everything that is going on and just feel drained.  Whew!  Am I really stressed and just don’t know it?
I seem to always have something new come up and have to deal with it, then I have to put something else on hold.  You will understand as I continue.  I’m going to try to make this as short as possible.
I’ve had some bladder/urinary tract troubles.  I’ve been to a few doctors for this, they run a urine test and it comes back clear, my blood work comes back clear.  But I’m in severe pain.  They will call it, bladder spasms, irritable bladder, non-infection cystitis….but they all say, they think I have Interstitial cystitis.  I need to go to a urologist to be properly diagnosed and to get better medications to help with it, but there is no cure, and some people don’t react to the treatments.  I’m lucky I don’t have severe flare-ups very often.  However, I do have little flare-ups often.  This has been a VERY SEVERE flare.  I went to the doctor on Monday, February 2nd.  Of course, everything was clear, but I felt I needed to go to make sure I didn’t have an infection.  She did give me an anti-spasmotic and they helped get me through the rest of the flare.
This sweet doctor was scratching her head with me, she said, “You have a lot going on for such a young lady.”  She kept saying, she couldn’t help but wonder if there wasn’t one thing that caused many of my issues.  Some umbrella condition.  You know I’ve never had a doctor say that to me before.  I’ve had Stuart say it, and friends say it, people on my blog say it, but doctors, not so much.  I couple of doctors have thought my migraines and Meniere’s may have a commonality but then they kind of ruled that out…maybe….kind of.  I think I might just talk to her again.  (she works with my new PCP)

On the way home from this doctor’s appointment I had a vertigo attack start.  Got home and it was BAD.  I’ll leave it at that.  You all know how what a BAD vertigo attack is like.  I didn’t keep up with how long it lasted.  I know my appointment was at 12:30pm and she was on time, and I was finally able to fall asleep WAY after dark.  I woke up sick again and it was about 11pm.  I was so nauseous for 2 days.  I’m not normally like that.  Usually after an attack the nausea leaves me after a few hours.  The anti-nausea meds work pretty well.  This time, I was really sick for days.  Ick.

On that Monday I was supposed to have my intake evaluation to start my physical therapy for my hip.  This had to be rescheduled.  They didn’t have anyone who could do this for TWO weeks.  1st thing that was put off because of something else going on with me.

The next day I had an appointment with a new neurologist at the Headache Clinic.  I had to reschedule because I was simply too exhausted to even move my head, and too nauseous.  I was afraid if I pushed it I would have vertigo again.  Now my appointment is in March. *sigh*  2st thing that was put off because of something else going on with me.

I went to see a new Pulmonologist on January 30th.  My breathing test came out good.  I do not have COPD.  That’s good to know.  So why am I coughing up phlegm every day?  EVERY DAY since October of 2012?  Yes my breathing is better, but this coughing up stuff is gross.  I get awful looks.  People seem to think I have some horrible disease.  I’m on 3 medications for Asthma that I take every day, and I have an inhaler, that I use often, and nebulizer.  And my new doctor said, “I don’t know if you have Asthma.”  What?  He said he needs to see my old records.  He also said that you can be clinically diagnosed as having asthma but they actually have to do a test to really diagnose you, and they often don’t do this test.  A lot of people don’t want to do this test, they’d rather just be treated for the symptoms.  Usually the symptoms present themselves so clearly that they are sure enough that they clinically diagnose it.  That is what the doctors did with me.  However, I was not presenting with the symptoms when he saw me.  So he needs to see my records.
There is a possibility that my acid reflux may have something to do with this cough.  So I need to have a barium swallow on Friday, February 6th .  Oh wait….I was still too wiped out from the vertigo attack and in too much pain from the flare-up to be able to do this, so I had to reschedule to February 20th.  3rd thing that had to be put off because of something else that is going on with me.
I did finally get an appointment set up for the CT scan for my hip.  It is set up for this Friday, February 13th.  I will know soon if my hip does in fact have avascular necrosis.  If it doesn’t I do hope this CT scan shows what the problem is, with all the pain I am in, I will be very disheartened if the doctor tells me he can’t find anything.   (not that I’m looking forward to, or wanting, a hip replacement)
Trying hard not to think about what may be, just living in the now, and waiting for what will come.  After all, none of my worrying about it will change anything.

Want to hear something really funny.  After all of the things I’ve been through.  All the crazy tests, all the things I’ve been told to give up….different foods and such (for example, I eat mostly whole foods, no refined sugar or gluten. I only drink water.  I can’t eat onions, garlic, apples, pears….all kinds of foods…it’s challenging sometimes.  But I have to use these food restriction of I get sick.)   I have been told in the past to restrict my intake of chocolate because of migraines.  Well, I found I could still have a square of dark chocolate now and then and it didn’t bother me.  I just didn’t over do it and I was fine.  Really, I could eat more and I didn’t have problems with my head, my tummy or bladder might not like it because of the caffeine, but my head was OK.  But if I limited it to my little square I was good, all the way around.  And I was a happy girl.  I could still have chocolate.

Dark Chocolate image from medicalnewstoday.com

Dark Chocolate
image from medicalnewstoday.com

Then it happened.  I had my square and immediately I got the worst migraine.  Oh no!  and my bladder started to scream!  What?  No!!!!
I waited a week.  I tried it again.  It happened again!  NOOOOOO!  Not chocolate!!!!
I literally cried!
I’ve given up so much.
my beloved apples.
dried fruit.
asparagus
onions and garlic
NOT CHOCOLATE!!!!
The moral of the story is….you can take away everything else from this woman, but chocolate is her breaking point!

 


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Let’s Talk Mental Health on January 28th

wendy:

I saw a intake psych guy today so I can be seen by a psych doc, so I can keep getting my medications. It’s just one of the things I have to do when I move…get a new psychiatrist. So it of course it was just fate when I read my friend’s post about Talking about Mental Illness. This is a great way to help raise awareness, and there are some wonderful pointers in this article to help break the stigma, so I thought I’d pass it along.
Take care of each other.

Originally posted on sunshine and chaos:

Image via http://www.waypointcentre.ca/news___events/around_waypoint/bell_let_s_talk_day_january_28/

There is never a wrong time to talk about mental health. (Even when you’re doing a post about mental health and trying to not sound like an advertisement for Bell.)

This year in Canada, January 28th is Bell Let’s Talk Day. (Bell is part of BCE Inc. and is Canada’s largest communications company.) Bell Let’s Talk is a multi-year charitable program dedicated to mental health and Bell has committed over $67.5 million to support a wide range of mental health organizations, large and small, from coast to coast to coast.

The 2014 Bell Let’s Talk Day raised $5,472,585.90 more in funding for Canadian mental health, all  from 109,451,718 tweets, texts, calls and shares.

One in 5 Canadians will experience a mental illness, yet 2 in 3 of those who struggle will not seek treatment options for fear of judgment or rejection. They may not tell anyone…

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Back? Hip? Pain! What is going on…. We may be closer to finding out..

Last Wednesday I saw the spine doctor, and good news, the herniated disc is doing great.  So, why am I in so much pain?  My physical therapist and spine doctor think it is my hip.  So do I.

(If you are ever in Charlotte, NC and need a recommendation for a spine doctor, give me a shout out.)

The spine doctor I see is a really good doctor.  He has a great bed side manner.  I never feel rushed when I’m in there, he makes sure to always look at me when he talks, he explains everything very well, and he is very thorough.  He examined me and decided I needed to see the hip doctor again.  I told him how I did not have any respect for the last hip doctor I saw, and why.  I’m not sure if I mentioned it here, and if I did, it probably bears repeating.  The last hip doctor breezed in, did not examine me, and told me that all my problems were from my back.  I asked him why then did I have hip problems before I hurt my back?  He simply ignored me, and said nothing showed on the CT scan, so good news, I had nothing wrong with my hip, good bye.  The spine doctor decided I should see a different hip doctor.  One he said he was sure would treat me with much more respect.  thank you very much.  I will not go to a doctor who does not respect me.

Today I had an appointment with the new hip doctor.  First I had an x-ray of my back.  After all the stuff going on with my back too, he wanted to get a view of it, and looked like no problems there.  Yay.  Then the doctor’s assistant came in and got a good history and did a good exam.  He told me what he suspected and that he wanted to go over everything with the doctor and he would come in soon.  I then had to have another hip x-ray to compare to the one I had in September.  They suspect I may have necrosis of the hip bone, caused by steroid use.  I have been given steroids a lot over the years of my life.  Doctors seem to hand them out like candy, they don’t think about the long term effects of what they can do to you.  Not once when I have been prescribed steroids have I ever been asked how often I have been prescibed then in the past.  Well, they can kill your bones.  The bones that have blood in them, it can kill the blood tissue, then the bone will collapse on itself.  Pretty gnarly huh?

Image taken from the Journal of the American Academy of Orthopaedic Surgeons  linked from http://osteonecrosis.me

Image taken from the Journal of the American Academy of Orthopaedic Surgeons linked from http://osteonecrosis.me

The x-ray that was taken in September had a very round ball socket, the one taken today looked a little bit flatter on the top.  It could have been just the angle of the x-ray, or it could be the beginning of Stage II.

If you are interested you can read more about the different stages here: Osteonecrosis.  Right now it looks like I’d be around Stage II, just starting to show outward signs….maybe.

My doctor wants me to send in my information about my cochlear implants to the MRI people there to make sure I can’t have an MRI under any circumstances.  They said sometimes they can do something and they can do them.  So I’m sending in my information.  I’m very wary about this, and think I might just refuse it even if they say it’s alright.  If they try this and (even if it doesn’t rip them out of my head) if it damages them, I don’t think it would be covered under my warranty, and I don’t want to have to have unnecessary surgery to replace them.  So unless they’ve done this many, many times before, I just don’t think the risks are worth the benefits.  I think he will understand that.

If I can’t/won’t get the MRI he said I will get another CT (Computerized tomography) scan.  CT scans are cross sectional.  Normally they are done at a certain width apart, I forgot how wide he said, he will order my new one to be done much closer together to try not to miss anything.

If you were reading my blog before when I went to the hip doctor and had the hip injection and it didn’t help at all  (another reason the original hip doctor said there was nothing wrong with my hip) this doctor said the hip injections often don’t help with this issue.

I was very impressed with this doctor and his assistant. He was very behind in his schedule, but I could understand why, and I didn’t mind.  He did not make me feel rushed when he was with me, he was very careful to make sure I understood everything.  He was great.  Also, before he came in to actually see me, I was seen by his assistant, and I had 2 sets of x-rays.  I wasn’t just sitting there twiddling my thumbs.  I was also impressed that when I got there he had already reviewed my chart and had questions waiting for me and orders for the back x-ray.  He walked in and knew all about me before he started talking to me.  I love it when a doctor does that!

This is a scary diagnosis.  However, if this is what it is, it is a diagnosis!  It can also be fixed pretty easily…I’ll have a hip replacement.  There are a lot of things that a lot of doctors do to work on this that don’t replace the hip, but there’s a lot of risk and most treatments don’t work very well. shhh, don’t tell anyone I said that.  I don’t want to worry people who are having those treatments done.  Just my opinion from what I have read…today…and from talking to my doctor.   Looks like most people have to have their hip replaced anyway, after many more years in pain.   I’m thinking I’d rather just get my hip replaced now.  I know I’m a bit young to have it done, but really not all that young, and with the new technology I hope the new hip will last as long as I do. That is…if I have to have it done.  I can’t predict the future.  Just preparing my mind for it in case that is a possibility.  Heck, my father has had both hips replaced, and I think one he has had done twice, or they are talking about redoing one of them?  He’s hard to keep up with.  All his artificial joints….shoulders, knees….ect….He’s bionic!  He has all the body parts, I have the ears.  Now if I get a new hip, I’ll be working on body parts too!  hahaha

I will be going back to PT, working out in the pool.  The doctor wants me as strong as I can be in case I have to have any kind of surgery.  Also he doesn’t want that leg to get too weak, and I can work it out in the pool because it is non-weight bearing.   Maybe I will hurry up and take this weight I gained from the steroids off and continue to lose more weight!  According to the scales at the doctor’s office I’ve lost about 8 of he steroid pounds.  (I gained almost 16 – that was depressing!  I’ve worked hard to take this weight off…and I want to keep taking it off! Go weight….get off my body!  Not that my body isn’t fantastic just like it is, but I want to make it easier on my hip…less weight to carry around….less pain!  I do not think beauty is determined by size!!)

 

drawing by w. holcombe copywrite - 2015 quote - unknown

drawing by w. holcombe copywrite – 2015
quote – unknown

Now for some awfully sweet news.

When I walked in this office I was met by 2 of the nurses there that just grabbed me and hugged me.  They we so happy to see me and to see me in less pain than I was in the last time I was there.  I also had a small vertigo attack last time I was there.  I’ve only been there 3 times, and I haven’t been there since October, but these girls remembered me and were so thrilled to see me.  I was amazed.  I told them I couldn’t believe they remembered me like that.  They said, they don’t remember everyone like that, nor do they treat everyone like that…only the nice people.  They kept saying how wonderful my spirit is.  How nice I was even though I was in so much pain.  I just cried.  My nurse couldn’t believe I was crying.  Just think, I am home alone most of the time, and on the rare occasion when I go out it is usually to the doctor’s office, I’m amazed I could touch a person’s life like that, in the little amount of time I see people.  We never know just how we may touch another person’s life.  So watch what you say, and always try to be the best person you can be.  On a day when you feel scared and a bit down, you just might run into a couple of people who grab you and hug you and tell you how special you are because you are who you are, and you just make them feel special because of that.  It was an amazing feeling!

 

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