Month: June 2015

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

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease23 Comments

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

Hip Replacement Week – 6

On By WendyIn Avascular Necrosis, Chronic Illness, Hip Replacement8 Comments
My New HIp. 14th April 2015 by Dr. Springer, OrthoCarolina
My New HIp. 14th April 2015 by Dr. Springer, OrthoCarolina

I just looked by at my last post about my hip replacement, that was a long time ago!

Let’s see what has happened?  I should tell you the good and the bad…I think this is going to be a short post.

The Bad:   I had vertigo attacks every day for 37 days straight.  I think I had good reason to be concerned.  My personal belief is that the Coumadin had something to do with it.  I was on the medication for 28 days, give it a week more to get out of my system….vertigo slowed down drastically.  I’ve had some vertigo since then, but nothing like I had before.  Thank goodness.

About a week or so after surgery I had vertigo that was very different than I have ever had before.  I felt like I was being thrown around the room.  Literally like my body was being tossed all around.  It was horrific.  I threw up and threw up.  My brain felt like it was coming apart in my skull.  I thought I might be dying.  I was so pale Stuart called an ambulance and I was taken to the emergency room.  My darling husband and sister spent about 7 hours at the hospital with me.  The tossing around stopped when I was in the ambulance, but I still felt like I was moving.  (I got vomit on the Ambulance attendant, I was so embarrassed.  She was so sweet.)  It is very difficult being in the emergency room when you have vertigo.  They can’t really do anything.  They gave me the same medication I have at home, I was just much more uncomfortable.

Funny story, I had to pee when I was in the ER, and of course I had to use a bed pan (they gave me a huge bed pan), can you imagine how much pain that caused when I just had my hip replaced 6 days before?  I must say I’m glad they gave me such a big bed pan, but I still over flowed it.  It was a mess.  The nurses had a big laugh though, they swore I could not have held that much pee and not burst my bladder!  However, it was not a comfortable thing to change my sheets and clean me up!

I’m still having a lot of pain because of my back.  The sciatic pain is hard to deal with sometimes.  My doctor told me to wait a while before I went to the see the back doctor, he thinks it will get better when all the swelling goes down and that could take a few months.  I can’t see the swelling now, except in my foot, but I guess it’s probably still there inside.  I’m really hoping the aqua therapy will help with this again.

The only other bad thing was that my physical therapy was a little behind because of the vertigo.  Unfortunately, I missed quite a few sessions of the home PT.  However, I work hard on my own, my physical therapist was always surprised that I was as far along as I was considering hadn’t been able to keep on schedule.

Another view of my New Hip - by Dr. Springer - OrthoCarolina
Another view of my New Hip – by Dr. Springer – OrthoCarolina

I saw my doctor, Bryan Springer, MD of OrthoCarolina, exactly one month after my surgery.  The first thing he said was when he did the surgery  my hip looked pretty bad in there, then he showed me my x-ray of my new hip, and said I was doing great!  I go back to see him in 3 months!  Woo Hoo!  I did request to go to further physical therapy since I didn’t get to finish my PT at home and he was all for it.  Unfortunately, I haven’t been able to start it yet.  I’ll be doing Aquatic Therapy and the place I went before have drastically cut their hours so I’ll be going to a different place.  I’m a little nervous because the other place was very quiet and I could easily hear my therapist.  I don’t know how the new place will be, I have a LOT of trouble with my hearing so if it is the slightest bit noisy in there I may have a lot of difficulty.

Wendy walking at 4 weeks.
Wendy walking at 4 weeks after hip replacement.

By the 4th week I was able to walk around the house with just a cane.  Now I can walk around just about everywhere with just a cane, if I didn’t need a walker for my balance issues.  I don’t put pressure on my walker though, it is there just to help me with balance so I’m putting my weight on my hip.  I’m walking a lot.  I can easily go up and down stairs, as long as I’m not too dizzy.  🙂  I can walk around the house and yard without any assistance at all…unless, of course, I need it for my balance. How cool is that??

Wendy going up and down the steps for the 5th time, at 4 weeks after hip replacement surgery.
Wendy going up and down the steps for the 5th time, at 4 weeks after hip replacement surgery.

I think I’m doing pretty good at PT by myself, but I want some guidance from a therapist about when I can stop following the “rules” I have to follow, and how hard I can push myself in certain exercises.  I know from experience I can get more range of motion exercising in the pool so I’m really looking forward to that.

For anyone out there who may be reading this who has Avascular Necrosis (AVN), I want you to know that the pain from AVN stopped the moment I had the surgery.  The pain from recovering from surgery has not been anything close to the pain of AVN.  I sincerely wish all of my illnesses could be taken care of so easily.  I do realize that this could show up in other joints, I will deal with that if it happens, until then I’m not going to worry about it.  If you are reading this and you have AVN in multiple joints I have the utmost compassion for you and hope you can find help.

*You may have notices my shirt is way too big.  I plateaued with my weight loss when the pain from the AVN started and I couldn’t move around much.  I didn’t want to get clothes that weren’t going to fit when I started to lose weight again. 🙂  It has started again…yay!  Very slowly though.  I did get the pants from Good Will so they fit pretty good.

**yes this is late, it has been more than 6 weeks since my surgery but I had a bit of trouble with my computer.  I’ll catch up a bit more soon!