#HAWMC Day 28 – 5 Challenges & 5 Victories

Today is Day 28 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

5 Challenges & 5 Small Victories.
Make a list of the 5 most difficult parts of your health focus.
Make another top 5 list for the little, good things (small victories) that keep you going.

5 Challenges5 most difficult parts of my health focus:

fear

  1. FEAR- My number one challenge is Fear.  I’m afraid of the vertigo.  Of course I’m afraid when I’m having it, but I’m constantly afraid I will have it even when I’m not.  I’m afraid of the pain, the migraine pain, the arthritis pain, all of the pain.  I’m afraid the pain will get worse and I won’t have any way to manage it.  I’m working through some stuff in my past and I’m afraid of what I’ll find out.  I’m afraid of more than I like to admit, but I’m working hard to be less afraid.
  2. Finding Doctors – I’ve had a difficult time finding doctors that treat Meniere’s Disease.  Even if they say they do, they often have little knowledge of the disease.  It’s also difficult to find a doctor who knows a lot about migraines.  It has been difficult to find good doctors to treat me.  In each field I’ve felt I’ve found a good doctor, only to be hit with the “I can’t do anything else” line soon.  It is a definite challenge to find a good doctor.
  3. Freedom taken away – Isolation, is a big challenge.  Since I can’t drive, I have to depend on my husband to get me out of the house, this is a difficult thing sometimes.  He works hard and when he is at home sometimes he has things to do here, or he just wants to relax, he doesn’t need to be taking me out all the time.  Plus I have to get over my fear of having vertigo in public before I can go out at all.   My freedom isn’t just taken away because I can’t go out, it’s also taken away at home.  Because of my illness doing certain things are not only difficult, they can be dangerous.  I can no longer cook because it’s dangerous.  I can’t take a bath or shower by myself, because it’s too dangerous.  It’s very hard for me to do any housework, sometimes because of the danger, sometimes because of the fatigue.
  4. Friends – It is a challenge to keep friends, and to make new friends.  Many of the friends I had before I became ill are not in my life as much now.  (various reasons, but let’s face it, I’m a different person.)  Making new friends is a huge challenge.  (I wrote a post about this, Making Friends?.
  5. Food – Food has been a challenge for a long time.  I have had GI (Gastrointestinal) issues for as long as I can remember.  Then I found out that I have Fructose Malabsorption, IBS, and a wheat allergy.  I have a specific diet I must follow so I won’t get sick.  This makes it hard for me to eat out, or to travel.  It’s hard to explain to people, “oh, I’m sorry I can’t eat that lovely meal you prepared”  It used to be hard to explain why I can’t eat wheat, now it’s really hard explaining why I can’t eat onions, apples, and all kinds of things.

5 small victories – list of 5 little, good things that keep you going.

wedding-love

  1. Successful marriage – This isn’t a small thing, this is a HUGE thing, but it’s what helps keep me going.  My husband and I both agree when we think about it we don’t feel that we work hard on our marriage, it’s just something that comes natural, but that isn’t exactly true.  We do work hard, it’s just something we want to do, so it doesn’t seem like work.  When I first started losing my independence it was very hard on our relationship.  I shut him out and he didn’t know how to talk to me.  We decided to see a therapist.  It was there that we learned to communicate again, and we both have a better understanding of how to deal with my illnesses.  If I could give one bit of advice to any couple going through one partner becoming ill, it would be to get a therapist. It might just make your marriage better.  I know mine is.
  2. Days I can deal with vertigo alone – this is a big victory for me.  When I start to have vertigo I panic because I never know how bad it will be.  See number 1 under challenges, and you will know, I’m afraid!  So going through a vertigo attack without help is a huge victory for me.  I’ve done it a few times, where I’ll have vertigo when hubby is at work and I don’t callv him home.  This doesn’t happen often, so this is a small victory, but it’s a big victory really, every time it happens.
  3. Making new friends – I’ve made many new friends on line.  I have a hard time meeting new people in person, but I’ve found that I can meet some wonderful people on line.  I’ve made some wonderful friends through my blog.  I have one friend that I met through my blog about 7 years ago now, our friendship has transcended the blogosphere.  We email, text, and send packages to each other.  We have called each other, but I can’t really talk on the phone.  One day I hope to meet her.  I think this is a pretty big victory, to go from losing friends to gaining such a deep friendship with someone I’ve never met in person.
  4. Getting out of the house – There are days I can fight through the fear and get out of the house with minimal distress.  When I’m having a good day we can go out and do normal things.  Those times are small victories, they get me through until the next time.  They remind me that I can do it.
  5. Diet – Eating my restrictive diet has made it so I can eat with minimal to no GI distress.  It may be challenging to eat this diet, but I think it’s a small victory, actually a big victory, to be able to eat without GI distress.

 

I wrote a similar post to this one here.

I’m participating in WEGO’s #HAWMC, if you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

On my mind…

me pop and terry2

Left – Terry, my sister, Middle – My Pop, Right – Wendy, me

I don’t talk about my family often, other than hubby and the furry babies.  But there is something on my mind, something that may explain part of sadness.

My father had liver cancer in 2013, he went through treatment (chemoembolization) and they got it.  It was a much easier way to treat cancer than anything I’ve ever seen.  He has been doing well since then….

Until his check up in December, well even then they didn’t think anything was seriously wrong.  When he had his initial cancer he had a large tumor that they got rid of, and he had a tiny little tumor that they left alone, but they have watched.  It hadn’t grown at all then at his December check up, it was an itsy bitsy bit bigger, so they decided to go in and do Radiofrequency ablation (RFA) and get rid of it.  They did this the near the end of January.  During that procedure the doctor found more 2 tumors.

This was supposed to be an in and out no big deal procedure, but it took my father a while to recover from it.  Last Monday he had the chemoembolization again on the remaining tumors, this procedure is less hard on him.  Now this coming Monday he will have RFA again on both of the tumors.

My father is 82 years old.  This is really hard on him.  It’s also really hard on my sister.  She is taking care of him.  She was taking care of him after his first surgery when I was put in the hospital for having seizures.  She was so worried about me she got my uncle to come stay with my father and came to help me, then she turned around and went right back to care for my father again.  For over a month now she has had no life of her own, she has only been taking care of others, and I don’t know how much longer she will have to do this.  She is normally very involved in her grandchildren’s lives, I know this has to be hard on all of them.

I haven’t been able to go see my father.

I can’t help either of them.

I can’t help but think….what if…

and I can’t help but feel worried, sad, and guilty.

 

When you have times when you can’t help others who you love, how do you handle it?

I shouldn’t feel guilty for being sick, but at times like this, I do.  Well, I feel guilty that my sister has to shoulder all of this on by herself.  I feel guilty that I can’t even be there to hold my father’s hand.  And I feel guilty that I felt better today than I have since I can remember.

After days of having vertigo constantly, yes I had 2 days of rotational vertigo that went on every single second, I woke up feeling amazing today.

I had a really good day…..it’s hard when I think about what my family is going through.

 

The Future is Scary, with a side of Hope.

It seems appropriate that I’m writing this on the eve of a new year, what better time to look toward the future?

For me, contemplating the future is more than a little scary…. let’s just say my anxiety about it has been more than I ever thought was possible.

After my illnesses changed my life, I learned about Mindfulness Based Stress Reduction (MBSR), it struck me how it has helped many people in many aspects of life, but mostly I was struck by how much it often helped people who are ill.  I had already learned of mindfulness during my studies in Buddhism, and while practicing yoga, but I admit I didn’t practice it regularly.

Over the last few years I’ve learned more and more about mindfulness, as I continued to studied Buddhism and MBSR, I’ve worked hard to live my life in the moment.  I don’t dwell in the past, (all of that is gone)…. I don’t worry about the future, (that hasn’t been written yet)…I try hard to live in this very moment, because that is all we truly have.

Yes, at times I still have moments when I get upset that I can’t do what I used to, and get upset about what might happen…but I don’t dwell on it.

Then we started making plans… how we are going to try to make things better for me….decisions about this unknown future, decisions that I have to make. Suddenly, I HAVE to look at the future. I HAVE to think about it.  And it really scares me.  Suddenly, I’m scared about being like thbe mindful of the futureis forever.  I thought I had accepted that and was okay with it.  Not that I was giving up, just that I accepted things if they didn’t change.  At least that’s what I thought, but actually, I thought I was going to be like this forever, I had come to terms with it, and now, that may change.  Now, I suddenly have options….plans.  I am having a very hard time not being anxious about the future.  I’m even thinking about things from the past. I keep thinking about all that I can’t do now, and how much my life has changed, and I keep wondering, could I get some of that back?  The main thing I know is that, I don’t want to lose myself in this quest to get better.  I don’t want to be afraid.  If I don’t get better, I need to know that’s not the end of the world.  I don’t want to start having to accept all of this all over again.

Each day I have begun to get more and more upset about things I simply can’t do.  As usual, most days all I can do is go from the bed to the chair in the living room.  But I tried hard not to let this get to me before.  I tried hard to make the most out of every moment…no matter what.  I’m trying now….but I am not doing as well as I have been.  Then I hear the voice in my head….Be Gentle With Yourself.  and I Breathe.  I am doing the best I can.  Yes, I’m a bit overwhelmed right now.  Everything is changing, all of a sudden, it’s going to take me a minute to keep up with it….deep breath….and I must remember, it still has to happen one moment at a time.

Okay, let’s move on from this and let’s talk about what the plan for my future is right now.

I was going to write a post right after my visit with the new ear doctor here in town, but I decided to wait until after the tests and the results.  I was supposed to get those yesterday, but I had to reschedule my appointment,  guess who was too sick to go?  Surprised?  I’m not….I have cancelled so many appointments because of vertigo, you just can’t imagine.

So, I’ll give you a break down of what is going on as of now…..

I saw the new ear doctor here.  So far he seems pretty good, I was impressed with his knowledge about Meniere’s, and he is very willing to work with the doctor from John Hopkins.  He suggested I start taking a low dose of Valium twice a day to try to keep my vestibular system calm.  He wants me to keep track of how much Sodium I’m eating.  (Okay, I laughed at that.  I know I don’t intake much sodium but since I haven’t been keeping a record he was not convinced.  I have been eating a low sodium diet for years, I know how much sodium is in almost everything, I don’t eat processed foods, and if I eat out I order everything without seasoning….yes I know that is boring, but it is safe with all of my food issues.  So I tracked my food since I saw him, I admit I was curious too, the results?  I normally consume just under 1000mg a day, I haven’t been over 15o0mg in any given day.  They say a low sodium diet is 2000mg a day.  I don’t think I have a problem there.)   I’m starting vestibular therapy on January 12th, we’re going to start training my eyes and body to balance without my ears.  I am to continue working with my headache specialist to get my migraines under control.  We will talk more about killing off the balance center after doing all of this and seeing if it helps.   Also after seeing the results of the vestibular testing I went through, we want to see if one of my ears is close to being dead already, if so we may go ahead and kill that one off, it may be causing much more trouble than the other.

(just let me say, I’ve been through these tests before and it wasn’t so very bad the first time, this time, it was absolute torture.  I cried.  I am not that kind of person.  If my husband hadn’t been back there with me, I don’t know how I would have gotten through it.  The person giving the tests told my husband she thought I was suppressing, because some things that should bother everyone I was not showing too much of a response on.  I thought that was strange.  I didn’t feel like I was suppressing, but after I’ve been going through this for so long, I’m sure I automatically try to not have vertigo when it is coming on.  I didn’t throw up, I almost did, I had cramps like dry heaves were coming, but no vomit.  Yay!  it really takes a lot to make me throw up now.  I rarely throw up during an attack now.  I get really nauseous, but I rarely throw up.  I always thought it was the meds.  Heck it’s already ruined my teeth and caused burns in my esophagus, I’m very happy it stopped.  Anyway….I’m very interested to find out the results of the tests, and upset I didn’t get to go yesterday.)

He does think my Meniere’s is definitely autoimmune.  Not that I want an autoimmune disease, but it does explain a lot.  Most of my doctors have felt I have symptoms that lead to one, but haven’t been able to put their finger on it.  I just have so much going on, and everything gets worse with stress, and gets better with steroids.  I often run a fever and no one can find a reason.  I have a marker for an auto-immune disease, but the one I have a marker for I do not test positive for….however, that is a red flag that I could have another.  They believe they simply do not have a test for the autoimmune disease I have, or I don’t test positive for it.  Like a friend of mine, has rheumatoid arthritis, but he always tests negative for it.  It is visible on all scans and he responds to treatment, but the test for it comes back negative.  So, in other words, we can’t prove it, but it is thought that it is an autoimmune disease, at least in my case.

So, there is the plan for now.  I don’t know what will happen.  How it will change.  Or anything right now.

I feel that there will be a lot of change around the corner.

The future is scary, but it holds promise, and hope…..something I haven’t had in a long time.

 

Don’t Let My Situation with Meniere’s Disease Depress You!!

I haven’t written in a long time because, I had someone with Meniere’s tell me they read my blog and found it very depressing.  This is something I have feared for a long time.  I’ve seriously considered stopping this blog because of this very reason.  I do not want people to read about me and think that this is their fate.

I wrote a lot about having Meniere’s Disease and what it was doing to me before I knew I had “MORE THAN MENIERE’S”.    Even then we knew my case was very atypical.  If you have Meniere’s Disease do not take the progression of my disease as a road map of what your life will look like.

This blog is a journal of my experiences.  I am far from a textbook case.  As my doctor has said…..I am different from any case he has seen.  (he works with a LOT of people with many Vestibular issues at Duke, especially Meniere’s…he is the head of the Vestibular Clinic)  He has told me that there is nothing else he can do for me.  It is recommended that I go to John Hopkins Vestibular Clinic.  They do a lot more research in vestibular disorders than Duke does.  Frankly, I haven’t found any other place that does more research in vestibular disorders than John Hopkins.

Most people with Meniere’s never go bilateral.  Those who do, most never lose their hearing.  For those who do, it normally takes a very long time.   And the very, few who get to that point normally have very little to no vertigo after that.  If they ever do it is very mild.

I’m very different.  When I went bilateral, I completely lost my hearing within 3 years, I now have cochlear implants.  I still have vertigo often.  Even with Cochlear Implants my hearing fluctuates a lot.  (by a lot, I mean many times a day…this is far from normal.  Some people with Meniere’s who have CI’s do have their hearing fluctuate if they have a vertigo attack, but not like I do.)  I will have times where I can go without severe bouts of vertigo for a while then I’ll have a month or so with attacks every day.  That is not normal for Meniere’s.  This is very atypical for this disease.  As my doctor said, I have more than Meniere’s.

I have tried to steer this blog to cover more of my chronic illnesses as a whole, and not focus on Meniere’s Disease.  It doesn’t seem to be working out that way.  My vertigo and hearing issues are a HUGE part of my life.  How do I not talk about them?

I do not want my blog to depress anyone…..I don’t want it to cause people to have less hope.  Meniere’s can be a very scary disease….I do not need to add to it.  I’ve always wanted to give people hope.  To let them know there is life beyond the disease.  That the disease is only a part of the patient’s life, it is not all of your life…it is not who you are.  Things are just different now.

Right now I really don’t know what I’m going to do with this blog.

If I change the focus, people will still see the past post and can see it as depressing, and disheartening.

I am thinking about making a static post that you have to see first when you come to my blog before going to other post, and then starting a new blog, that is much more positive, and not mention Meniere’s Disease as much.  I am afraid I may lose a lot of you.  I’ve changed blogs before, and I lost a lot of people.

Maybe I’ll just give it a try.  Or have 2 blogs for a while?

I just don’t know.

Right now.  This has really been on my mind and has me stuck.

Love and Peace to all of you!

wendy

I Didn’t Expect

expectationI didn’t expect the depression I’m feeling….

I saw the signs, I have so much going on, there are so many outside reasons….but I’m struggling….this is why I’ve been away so long, why my blog has been suffering, why I simply haven’t.

Today, I’m going to write, I have too much to write about, I am overwhelmed by how much I have to write about, but I need to…..

I didn’t expect to have vertigo almost all day the day before surgery.

I didn’t expect to have vertigo in the waiting room right before surgery.

adapted from Teen Titans cartoon

adapted from Teen Titans cartoon

I didn’t expect the intense pain after my surgery.  During surgery the back injury that just got better was aggravated.  I was not just dealing with surgery pain, the pain I expected, I was dealing with the back pain and severe sciatic pain.  To make it worse, I couldn’t move to make the back and sciatic any better.  I was stuck, in so much pain.  We could not get this pain under control.  I have issues with pain medication.  Everything makes me hypersensitive, I feel like things are on me, it makes me itchy.  So I was only prescribed Tylenol and Tramadol.  This didn’t do it.  They tried to put me on my side to help, this caused me so much pain I swear I wasn’t even in the room it was just pain.  Luckily, it didn’t last long.  I decided I’d rather itch.  They tried Hydrocodone.  nothing.  I don’t know what all was tried.  at 2am they tried Toradol, this is a NSAID given by IV or injection.  I’ve had it for my migraines before.  This finally worked.  Probably in conjunction with everything else.  I finally fell asleep.  Only to be awoken at 4am to have my blood drawn.  Then at 6am for something and at 7am because shifts changed….it was an exhausting.  But I have to say, the night nurse who was trying to help me was absolutely wonderful, I couldn’t have asked for better care.

I didn’t expect to have low blood pressure, a magnesium deficiency, and have to stay another night.

I did get out of bed the first day and walk a little, I was told I did great.  (the intense pain hadn’t started yet)  I had my morning Physical Therapy on the second day and did well, even though I was a little dizzy.  I didn’t expect to have a vertigo that afternoon.  During my vertigo attack I had 3 different people come to work with me, including my Physical Therapist.  No afternoon PT, no going home.  They also had to make sure my pain was under control before I went home.  It was better that night…but I had to sleep in a recliner, glad we bought one for me the right before I had my surgery.  (ugly thing)  I didn’t expect to HAVE to sleep in a chair for many nights after I got home.  I didn’t expect to cry from the pain so much, after my surgery.

I didn’t expect my sister to come and help.  I am very grateful.  I didn’t expect it to be so hard for Stuart to stand back and allow someone to help.  He said he’s just used to doing it, it’s hard to ask someone else to do things.  Yep, I know that feeling.  It’s very hard to ask others to do things.  Especially, for me to ask for the little things.  It’s hard to ask for things like something to drink, or a snack, to reach something for me, to get me a blanket if I’m cold….ect.  Yep, I’m having a hard time asking for things too.  I’ll ask for someone to go to the store, or do some laundry, things like that…..but it’s the little things that get me.  It makes me feel so helpless.  Eh…I guess I am.   (I feel pretty weird having anyone other than Stuart do private things for me too…that is one of the hardest things I’ve had to deal with…one of the hardest)

I didn’t expect to have vertigo every day since my surgery.

I didn’t expect for Stuart to have to take off a second week from work.  (I think he got in a little bit of work the second week…but not much.)

-Rachel Wolchin thegoodvibe.co

I didn’t expect…..

I didn’t expect to have a death in the family two days after my surgery.  It was my extended family by marriage (my cousin’s daughter’s husband), I didn’t know him personally, but the circumstances of his death were hard….so very sad.  He was young, in his late thirties.  He was EMT on his way to work and pulled off and parked at a gas station, they found him slumped across the steering wheel dead.  The autopsy has been inconclusive.  There are still test out, but they don’t expect to find anything.  They will probably have no idea why he died.   They also found out a lot about him that his wife had no idea about, it is very, very sad.  It also makes you think…..and think….

I didn’t expect for one of my father’s friends to die the next day.  I knew him growing up.  He worked with my father, they used to Barbeque (or barbecue in some parts) together.  When I say Barbeque, I mean Southern Barbeque; a huge hog in a pit, slow roasted all night long….oh my it is good.  We used to have picnics and things over at his farm.  He let me touch my first cow, it was much softer than I thought it would be.  He was 12 years younger than my father.  As you get older you see more and more friends die, I wonder if my father is having a hard time with this?  I’ve noticed he goes to a lot of funerals.  That’s a subject that would be hard for me to broach with him.

I didn’t expect my friend Laurie from Hibernationnow’s Blog to die on April, 21st.  She caught the flu in February and that just snowballed into more and more, she just got sicker and finally her body couldn’t take it any more and she died.   I’m in complete in shock about her death.  I keep looking for updates to her blog in my email.  I look for her to chat with me on Facebook.  I heard from her in some way nearly every day.  It may not have been personally, but I always knew she was there.  Now she’s not.  Just like that….suddenly her voice is gone.  Her thoughts are not in my life any more.  Laurie fought fibromyalgia, she was quirky in ways and loved the color yellow, she loved the ocean, writing, and most of all her family.  We were both foodies, and we both lost a dogs who left huge holes in our hearts, and later we both adopted rescue dogs who took over a new place in our hearts.  The one thing we disagreed the most about was our feelings about the chef Alton Brown.  She hated him, I love him…..it was quite a debate on one of her post!  I will miss you Laurie.  All the support and love you gave me, and our friendly banter.  May you be pain-free in a nice warm place near the ocean taking a walk with your father.

I didn’t expect my dearest friend’s mother to die this week.  She has been battling Amyotrophy Lateral Sclerosis (ALS, otherwise known as Lou Gehrig’s disease) for the past 9 months.  I’m actually relieved she didn’t have to live in her body with her mind fully aware without being able to communicate with anyone for very long.  I loved Kathy very much.  I wanted so much to be there to help care for her.  I wanted to be there for my friend and help her through this difficult time.  Now I can’t be there for her again.  The death of her mother is going to devastate my friend.  She was closer to her than anyone.  They talked daily.  They were best friends.  Her mother’s illness took a toll on the family.  Yes, she will have a lot of people around her, but I know she needs her best friend.  It is extremely hard not to be able to go.  I am so tired of feeling useless.  But this should not be about me, it should be about Kathy.  She was such a strong woman.  A single mother, raising 3 children mostly by herself.  She was so generous and kind.  She worked so hard and hard and hard….and she gave and gave and gave.  This probably gave her more joy, but from my view I wish she had been able to take more time for her.  She was just about to retire when she got sick.  I know Kathy did have a good life, and celebrated life, but I also know she was looking forward to slowing down and just enjoying her grand children.  Please don’t put off living until tomorrow.  Kathy was one of the best people I knew.  That sums it up pretty well.

I didn’t expect writing this post would make me feel better.

tonibernhard.comquote

4 days…….What if?

Surgery is in 4 days.

I’ve been very nervous about a few things, mostly my vertigo and how it will affect my recovery.  I don’t like not having a plan.  When I don’t have a plan, I get scared.  I don’t like to admit fear.  I’m not nervous about the surgery itself.  I’m not nervous about normal hip replacement recovery.  I’m nervous about what I’ll do if I have a vertigo attack right after surgery.  What will I do if I can’t roll over on my left side if I have positional vertigo and the only way it is relieved is by lying on my left side?……I’m afraid of falling…….I’m afraid of how I’ll bathe …..

Then I really sat down and faced my fears….What if?

drawing by me....haha

drawing by me….haha

Really, what if these things happened, what is the worst that would happen?

About having positional vertigo….I can’t lie on my left side….ok, maybe it will be relieved by just turning my head to the left while lying on my back, or tilting it to the left while sitting up, or maybe twisting my upper body will do it?  If not, well golly, when I have vertigo from a Meniere’s attack I can’t get relief, and I live through it, I’ll live through it.  I won’t like it, but I’ll survive.  There is a maneuver that can be done that will stop the vertigo when I have BPPV, it does involve turning me partially on my left side for a bit, but I think it can be adapted.  I’ll just have to deal with it.  That is the biggest thing isn’t it.  I will deal with it.

About having vertigo while walking…or having a drop attack….Well I sure can’t control that!  If it happens, hopefully I can fall well.  Oh, I just giggled, I couldn’t help it.  I really do try my best to fall well on a day to day basis, and I do a pretty good job of it, I’ve only broken one bone!!  No concussions!  (Honestly you have no idea what a feat that is!!)  I don’t know how to fall well right after a hip replacement.  However, I am going to make sure I know how before I leave the hospital.  I’ll have the physical therapist show me the best way to move my leg if I fall.  Maybe if I fall I can do that, if not….well hopefully my hip won’t come out of joint.  If it does, we’ll deal with it.  It isn’t ideal, but something I just can’t control, no matter how much of a plan I have.  I can’t have someone with me 24 hours a day for over a month…or three….to walk with me, holding on to me, so that if I suddenly have vertigo of a drop attack they can catch me and help me.  I’d still end up on the floor.  OH…that’s another thing I’ll have to make sure I know how to do…how do I get up off the floor???  Guess that comes along with how to fall huh?  I wonder how many people ask the PT….so, what is the best way to fall?   hahaha    “Well first, hold on to your walker for dear life!”  *snicker*

I have to admit, I’m a little afraid about how to get in and out of the tub and taking a shower.  Our bathroom is not ideal.  It is not level.  The tub is far from being level.  I’ve never been able to stand in it to take a shower.  My balance is simply not that good.  I have only taken baths since we’ve been here.  The only times I’ve taken a shower has been when I’ve gone to the pool….maybe I could just go to the pool a couple of days a week to shower.  haha….yeah, that would work…considering I’m not getting aqua therapy any more, I’m sure they would let me just come in and use the pool plus it’s a about a 20 minute ride from my house….not the best idea, but it’s just a nice shower!!!!   I’m curious if the shower seat is going to sit level.  When you have a hip replacement you can’t bend your leg beyond 90 degrees, and you can’t put all your weight on that leg. so stepping in the tub is a no-no.  I have to sit down and have a straight leg out and slide in the tub.  They make a special seat for this, but our toilet is in the say.  I have not figured out how to make this work yet, but I’m sure the physical therapist who comes over the day after I get home will be able to do it.  I’m sure they have seen everything.   Hey, I know, I’ll just sit on the seat with my legs out of the tub.  Stuart can help wash the part that’s in the tub, and then he can wash my legs out side the tub.  Yep that will work.  hahaha.  Hey, worst case scenario.  We will work it out.

So…..What if?

What if?….. isn’t so scary now is it??

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.