Picnic with Ants

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


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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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Crisis over the Holidays

Oh no!  What a time for a medication mess up!

I was loading up my pill-box for the week and only had 3 of my mood stabilizer…..hmmm, that’s not right?

So, I asked Stuart if there was a refill that hadn’t made it in my case.  (I have a case where I keep all of my medications, then I load up my pill organizer every week, if there are not enough pills in the bottle to fill the organizer the next week then we order a refill….easy, peasy….medication is always kept up to date.)   Stuart didn’t have any refills for me….uh oh.  He said he’d look into it.

We are not using a mail order pharmacy.  A new thing with our new insurance.  If you have a prescription that is maintenance you have to get it from the mail order pharmacy.  So, he goes on-line and it’s right there, with refills so he orders it, should be here within 2 days, no problem.  Great!

Big Problem.  7 days later I realized the medication hadn’t come.  How did I realize this?  I was crying uncontrollably for no reason and let’s just say my moods were going crazy.  My head hurt so much I thought I was going have to go to the ER.  What was wrong with me???  Wait?  “Stuart?  Did my medication come in?”,  “No?” That means I hadn’t been taking my mood stabilizer for 4 days.  Rut Row!!ICONATOR_4e0b548ea7c2830faf155644ee69298f

Stuart calls the pharmacy.  Yes, the prescription had refills, 3 to be precise, but it was written as 3 one month prescriptions.  They needed it to be one prescription for 3 months.  So they had a call in to the doctor to change it.  Oh my gosh!  Did they think to call the patient to see if they needed the medication sooner than they would be able to get it to me by doing things this way?  NO!  Stuart told them that I needed the medication NOW, so they put ONE month worth in the mail and I got it the next day, that meant I was off of my mood stabilizer for FIVE days!

This is not a drug you just go cold turkey on.  You don’t just stop taking it and not notice.  There is reason you ramp up and off of these kind of drugs.  Of course, this had to happen just a few days before Christmas…..as in, I got my new pills on Christmas Eve.  Can you imagine the hell I have been going through?  How have I managed this without going absolutely crazy?  Well, I am crazy we know this…..hehehe  (yes that is one way I deal with things like this….I try to keep a sense of humor…sometimes it works.)   First, I knew how I felt was all because of this medication mess up.  My feelings were not me.  What was going on in my head was not me.  Yes, this is very hard.  I am lucky that I have a good friend who understands a lot of this and I emailed her a lot and she was wonderful.  I’m also lucky that my husband listens and doesn’t get mad when I’m very unreasonable at times like this, he understands it is the medication.  Yes, sometimes he does forget then we both look at each other and take a deep breath and say…..things will be better when the medication gets ramped back up.

Oh yes, that’s another thing, I have to ramp back up on this medication.  I couldn’t just jump back on at the dose I was taking, I could have gotten very sick.  So still, I’m not quite the Wendy I usually am.  I won’t be for another week an a half.  You have to ramp up on this medication slowly or you can get a very bad rash that is not a good thing.

little Wendy at Chirstmas.

little Wendy at Chirstmas.

I’m also dealing with this by trying to be mindful….yep there’s that word again.  I’m trying to just focus on this moment.  That has been VERY hard to do.  I have gotten all caught up in the Holiday Hype, in my mind.  Everywhere I looked people are telling you that you are supposed to be spending time with family and friends.  Really, does the TV not make you feel like something is wrong with you if you don’t have a big family and a whole lot of friends to spend the holidays with?   Oh I got so depressed.  My family?  Well let’s just say, I am so not a part of all of that now, but my mind goes to Christmases past when at times like these.  Now that my medication is starting to work I’m just fine with how things are, I think it’s a good thing.  But when it was all going on I was hurt, and sad and just feeling like my life was so not what it should be.  We have no friends here so we were all alone, and I was thinking about how we were cheated out of not having children and well just everything……see where my mind can go when medication is not working???

Deep Breath here huh?

The past is the past.

I can’t change those things.

The only thing I have any control over is today.

Breathe.   Just Breathe.

and this is how I live my life most of the time.

This is how I see things most of the time.

This is why I stay on my medication!   *wouldn’t you?*

 

I have some good news!!

I’ve been off of the steroids for a good bit now and no bad vertigo!  Yay!!  I’m so thrilled!  I have to say, I was a bit scared.  I tried not to be, but I it was there….fear that the vertigo would start right back up as soon as the steroids came out of my system.   So glad the fear was unfounded….see why we should live in the now and not try to predict the future?

I have started Aqua-therapy for my back/hip and I did great in the pool.  The physical therapy in the pool is so much easier.  I am really hoping it will help.  I see the back doctor next week, we’ll see what he has to say.  I have been very discouraged about my progress so far, but after just 2 sessions in the pool, I’m hopeful this will help.   yay!!

Good news is, in just a short time, I’ll be starting the New Year all stable again.
I haven’t had a full-blown vertigo attack in a couple of weeks.
The aqua-therapy is going well,
and I’m going to making some plans to change a few things around here……so Picnic with Ants is going to have changes….they will happen slowly I’m sure as I’m not able to do things very fast….but we’ll see how it goes.

 

Here’s to a New Year!

May we all great it with love, laughter, and much good luck!

 

Tomorrow is my mother’s birthday.

I will be celebrating her life.

I’m very thankful for the 64 years she spent with us on this earth, especially the almost 30 she spent with me.

Christeen....my mom

Christeen….my mom


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I love this little book…so I’m passing it along to you for Chirstmas. :-)

A while back I stumbled upon Lisa Esile’s blog and well, she has a way of saying things that just makes me think…yeah, that makes so much sense….thanks.

She has this cute little book ebook that she gives away.

That’s right, she gives it away.

It is so cute…I just loved it.

I think you will to, so I wanted to pass it on to you.

Here’s the link for you to go and grab a copy and read it…look at it….(it has some cute illustrations).

7 Secrets Your Mind Doesn’t Want You To Know

It’s really short, and it makes you feel good.

I didn’t have anything to personally give you for Christmas this year so I thought I’d pass along Lise’s book!

I hope you like it!!

(So…just click on the picture, or the title of the book and it will take you to a page where you can download a copy of this cute little book.)

Happy Holidays!

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