Good – Bad – Ugly…. Sometimes it’s Pretty, isn’t it?

On July 13, 2015 By WendyIn Chronic Illness10 Comments

Thank you all for the outpouring of support and encouragement about my blog and writing and well just me being me.

The comments here and on Facebook, emails….well, everywhere…I was overwhelmed by the love!

I’m sorry I haven’t posted before now….I’ve had some bad and ugly days recently….there’s been come good and pretty times in there too, maybe not whole days, but I’ll take it!!

First right before I went to the appointment I’m about to talk about, I broke my pinky toe. Yep, I mean within the hour before, I caught my toe on my nightstand and OUCH!! I saw stars and everything. Pretty little stars. *snort* It’s been a while now…it is still slightly sore, but it has all healed, finally!! It did mess up walking on my hip a bit though….same leg. But I didn’t fall!! Good thing!!!

I was very excited the beginning of June I saw a new neurologist here in Charlotte. She runs the Carolinas Headache Clinic in Matthews, NC…so it really isn’t in Charlotte, but it is so close it may as well be. The first appointment I had with her she spent over 2 1/2 hours with me. I don’t know if that is her normal time for a new patient or not. I know she sets aside a longer appointment for a new patient, but I was also her last patient for the day so she took her time. She gave me a very thorough exam and we talked at length about my medical history. She was very interested. I was very impressed. I love my neurologist at Duke, who also specializes in headache pain (my doctor at Duke recommended this doctor, they know each other well).

As much as I have loved my doctor at Duke, I think this doctor will be able to really concentrate on me more. She won’t be so over whelmed with all the influx of patients from the system at Duke. (I hope that makes sense) The doctor here is very interested in my Chronic Persistent Daily Headaches. (I have a headache all the time, it ranges from about a 3-5 on a scale of 0-10 pain scale, I have had this headache since I was 11 years old, right after my first migraine) She believes if we can break this headache then we can break the migraines and cluster headaches. Wouldn’t that be nice?

She started me on a new medication, it was to hopefully help with the daily pain of my head and my all over pain. Unfortunately, it hasn’t worked. However, I don’t think we can judge it fairly. I am on a drug called Limbrel, this helps with inflammation and I had problems getting my prescription for over a month. (long story short…the doctor faxed in the prescription but the pharmacy said they never got it…this happened over and over, finally they got it straight…why it took so long, well I have no idea, but I finally have it! 3 months worth, thank goodness. I had no idea how much this was helping my joints and all over pain, I was having trouble typing my joints in one of my hands were hurting so much.)

The past month has been filled with the worst migraines. Let me give you a little run down….Out of the last 25 days I’ve had 22 migraines, 1 cluster headache, and 15 attacks of vertigo. On July 2nd a vertigo attack started around 3pm and lasted until after 3pm on July 3rd. (July 2nd was my birthday…I will just have to celebrate 364 Un-birthdays!! Want to have a Mad Hatter Tea Party with me??)

Can you guess why I haven’t been posting? Or reading my dear friend’s blogs?

I admit the depression took hold of me and jerked me around a bit. I think I had some reasons, even if I didn’t have Bipolar I disorder, but I admit my emotions do go a bit extreme because of my illness. The demons didn’t knock on the door, they busted it down! For a while there I thought I was lost. I was drowning, big time. I was having panic attacks, heck I’m still having a few of those. I’ve been having trouble going out of the house again for few of having attacks. I hadn’t been doing my mindfulness practice…except during vertigo attacks, and sometimes not then, sometimes I would completely freak out. (however, I’m relieved to say that most of my vertigo attacks have been mild, by that I mean slow rotation, they haven’t been rapid spinning….but I won’t go into detail about what they were like. Just know they aren’t as scary. However, I will just say….they are exhausting.)

I’ve been trying hard to pull myself out of the depression. The odd thing about this, the medication that the neurologist put me on is actually an antidepressant. I was really hoping it would help with this too. However, I think the fact that I was in a lot of pain, and had so many headaches and vertigo when the medication I was taking was supposed to be helping…well this was making me more depressed. Makes sense right? Plus I have a few other things going on in life that are stressing me out too.

Recently I’ve been diving into my mindfulness studies again, and trying to meditate. Meditation doesn’t fix things, but it just makes me be here. I was so caught up in the fact that I was in pain, that is where I was, I was hurting, angry, sad, scared, did I mention angry…oh you would not believe the anger that was popping up! wow! I hate it for Stuart the past few weeks. At least he couldn’t hear the even more snappy things I was saying in my head. ewww.

So, I’m focusing on just being here. I’m taking a lot of deep breaths, and I’m just trying to be me.

On a different note….I’m in physical therapy now to help my hip get a bit stronger and have more range of motion. I have a day in the gym one day a week and a day in the pool one day a week. The pool is wonderful. However, I’ve had to miss a few sessions because of the pesky vertigo. The last PT session, the therapist really showed me that I am not as strong as I thought I was, she kicked my butt!! Whew! However, I’m afraid that the new exercises that I have been doing have aggravated the back injury. I have been in so much pain. The sciatic nerve has been shouting at me. It’s not just yelling on my left side now, it’s screaming on both sides. I’ll talk to her at my next session tomorrow. I may have to go see the spine doc again.

Well….I can’t think of much more to say today.

I don’t know if I’ve covered good, bad, ugly…and a little pretty, or not. But there is some of all in my life.

Good….focusing more on mindfulness again.

Bad….vertigo, migraines, back pain…being really mad there for a while.

Ugly…umm, vertigo sometimes, and you don’t want to see my face when she’s kicking my butt in PT. hahaha

Pretty….My new headache doctor, she’s really pretty – but not as pretty as my Physical Therapist, oh my! The feelings I get from both my new headache doc and my PT.

Hip Replacement Week – 6

On June 5, 2015 By WendyIn Avascular Necrosis, Chronic Illness, Hip Replacement8 Comments

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.

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!

Chonic Pain/Ilness Photography 2015 Project Week 3

On May 25, 2015 By WendyIn Chronic Illness, Photography6 Comments

This is the final week of the Chronic Pain and Illness Photography Project I have been participating in for the past 3 weeks. Facilitator Stephanie Blumensaat did a marvelous job putting this project together and keeping the group running smoothly. What a wonderful group of creative people who were willing to share so much of their art, their lives and their souls. Simply amazing. Stephanie has a blog, Chronic Pain Life, that you just might want to check out. She will be putting together future projects that some of you might want to participate in, I know I will.

I hope you enjoy these photos and insights into me….

Day 15 – Gratitude. – posting a day late

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I have much to be grateful for every day, yesterday was no exception, but it was a very rough day, things happening all around me that I could not help with or do anything about. (my dog had an emergency trip to the vet and I couldn’t move my head without vomiting to help…it was a very hard day.) Yesterday was filled with rapid vertigo. Yesterday I had a very long, rough day with vertigo. I am very grateful for the bucket I could throw up in if needed….and all the medication I had that made me not have to throw up so much. (I’m most thankful for my darling husband for taking care of our furry baby…she’s fine…and taking care of me.)
Truthfully, I’m very grateful the day is over.

Day 16 – Dreams

One dream I always had was to go to Disney Land, not Disney World, I wanted to go to the original.

Right before I got very sick, I was able to go. This is the land of dreams….a place where dreams come true…..the photo is the refection of the castle. I think this photo is very symbolic of my dreams today, they are very vivid and beautiful, a little wavy, and sometimes a bit upside down….that doesn’t mean I’ve stopped dreaming.
I still have many dreams, some are short term, some are long term, some are very attainable, some probably aren’t. And that’s OK. I think healthy people have the same kind of dreams….not all come true.

Day 17 – Identity

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The image I chose for this prompt is a mask I made….the outside shows how most of the world sees me….the invisible illness, my cheery exterior…is that part of my identity….yes, I think so. The inside of the mask shows how I feel about things and how I feel about me. I think this is a good representation of my identity.

This prompt was very hard for me. If I were able to really get up and out and create a new photograph for this prompt I would have done something different.

How do I Identify myself now? I’m still Wendy.

Day 18 – Know This

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Know This….You are not your illness/pain.

Your illness and pain are a part of you but it is not YOU.
Do not lose yourself.

Day 19 – Spirit

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Showing my spiritual side. I hope you enjoy this photo as much as I do.
I took the selfie yesterday and manipulated it in Photoshop to show my spiritual side.

I study Buddhism,
I follow a mindfulness way of living.
This has made a huge difference in my life, and how I deal with chronic illnesses.
Namaste

Day 20 – Goals

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Take more risk…..overcome fear….first step!….walk out the front door…..

My goals….get out more.
We moved to a new place in August of last year. During the move my hip started to hurt. I haven’t been able to hardly walk since the move. I had hip replacement surgery on the 14th. I’m starting to walk again, that is going very well. However, I’ve had vertigo attacks every day for over 30 days. Fear rules my life. I started to get in the shower today, and was then going to go to the store with my husband. A first outing since my surgery, other than to the doctor….

right before I got in the shower I was on the computer and the world started to tilt……suddenly it started to spin, violently…for 5 hours I was spinning with violent vertigo, so very, very sick!!!

Then I slept for 2 hours and I still feel like I have no balance and my head is mush.

Deep Breath!!!

This is a HUGE GOAL!
Get out that door!
Expand my life!
I know I can do it!

if not…my Goal is to be perfectly happy, in the life I have, just the way it is.

Day 21 – Invisible

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Invisible Illness and me

“You look so good!”
Just beneath the surface
no one can see
the cracks….
the cracks…..

Day 22 – Music (bonus prompt)

As most of you may know, I’m deaf. My chronic illness took my hearing. I haven’t been deaf long, and music is still in my head and I still sing and love music…I just can’t listen to it. (I have Cochlear Implants and can hear some music but not like I used to. Hopefully, I will be able to hear it better in the future, but for now, not so much.)

When I relax I often hum, when I’m up I often sing, my husband and I often make up silly songs and laugh…..the silly songs are wonderful, they make me feel normal, and keep up my spirits. Music can be very therapeutic.

Today I wanted to share something different with you.
A few years ago, right before I lost all of my hearing I sat down with a friend of mine who is a sound engineer and he did a pretty good recording of what my tinnitus sounds like. These are the sounds I hear all the time. I don’t hear the worst of it all the time, but I do hear some of these all the time.

One day recently I suddenly didn’t hear anything and it scared me. I felt completely alone and was terrified. It didn’t last long. These sounds can drive me crazy at times, but they can also be very soothing.

This is my music….my Sounds of Silence.

Day 23 – Art (bonus prompt)

I use my art to help me with my chronic illness in many ways.
Here you will see where I have three expressions of me.
Silly loving Me.
Chronic Pain Me.
Natural, Strong Me.

I try to create something every day….drawing, writing, photography……anything creative…..
My art helps me heal, even if I’m just doodling, creating heals my soul.

(sometimes when I can’t voice my pain, I can show it in my art)

The Chronic Pain and Illness Photography Project is over now. I’ll be returning to my regular scheduled programming. 🙂

I’m sure my regular readers are curious about my hip replacement surgery recovery. I’ll give you a thorough update in the next post….here’s a little spoiler….my hip is doing GREAT!

See you soon. I’m off to Duke for visits to my doctors tomorrow, and the next day, and the next day….. Yay!!

I Didn’t Expect

On April 27, 2015 By WendyIn Avascular Necrosis, Chronic Illness, Hip Replacement, Pain, stress5 Comments

I 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.

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.)

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.

4 days…….What if?

On April 10, 2015April 10, 2015 By WendyIn Avascular Necrosis, Chronic Illness, Meniere's Disease9 Comments

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??

When it Rains…..

On April 5, 2015April 5, 2015 By WendyIn Avascular Necrosis, Chronic Illness12 Comments

I’ve had so much going on, not just getting ready for the surgery but other things happening too. As they say, “When it rains”….learn to dance. (ok, I’m paraphrasing)

quote by Vivian Green. image from - www.background-kid.com — quote by Vivian Green.
image source – http://www.background-kid.com

As I mentioned in my last post, a few weeks ago I started having positional vertigo. If I moved my head in certain positions I had violent vertigo….left for a very limited life. I’ve had something like this before but it was associated with my migraines. No migraines with it this time. After a few days I tried to get in to the doctor here, but no appointments for a few days (13 days after it started), so after 12 days, it finally stopped, the day before my appointment. I did see the doctor and I was diagnosed have Benign Paroxysmal Positional Vertigo (BPPV). He said this will most likely pop up now and then forever. It is caused by crystals in your ear coming loose and going where they aren’t supposed to, the vertigo stops when they go back. (I’m just touching on the highlights of what he told me here.) There is a maneuver, called the Epley maneuver, that the doctor can do to get the crystals to go back, sometimes the crystals go back on their own…like mine did. BPPV can cause one to have feelings of vertigo, dizziness, nausea, lightheaded, and unsteadiness. It will most often dislodge again, over and over. I’m not supposed to look up, or bend over very much, and be careful when I’m lying in bed how fast I turn over…..

Some sites do say that this can happen only once. I know someone who had this happen once and never had it happen again. Maybe I’ll be one of those. (one can hope.) I have having very strong feelings of lightheadedness, and unsteadiness. When I turn my head too fast I am wayyyy off balance! Johns Hopkins has a very good write up about BPPV, what it is, how it is treated, and the prognosis. I won’t try to summarize it here when you can just read it there, it’s a pretty short article.

Yes….I have a 3rd thing that causes vertigo. I’m such a dizzy broad!

Last week I had a real scare, it happened so fast I was just in shock the whole time. I suddenly had pain, swelling, and a big knot (sorry it was just too big for me to call it a lump) in my breast. I wasn’t concerned at first because I know most often breast cancer doesn’t cause pain unless it is very advanced and symptoms don’t come up so fast….I mean within hours. But there is a breast cancer that can do this, it’s called Inflammatory Breast Cancer. That stuff is scary!! My doctor got me in for an emergency mammogram and ultrasound, and an evaluation from a Breast Specialist, within days. They took a lot of pictures an it hurt like the dickens because my breast was is sore, even the ultrasound was very painful. But I’m happy to say, I’m fine. Even though I’m post menopausal, for some reason my hormones decided to make my milk ducts go crazy. Now everything is going down…slowly, and the pain is going away. Thank goodness. But it was very scary there for a while. I didn’t have all the symptoms, but I could have been in the very early stages, and they normally catch it at Stage III or IV. It is hard to diagnose and is very aggressive, the normal life span is 5 years! Yes, I’m preaching a little bit about Inflammatory Breast Cancer, I feel more people should know about it. Here are a few links that talk about it, take the time and look over one of them. Inflammatory Breast Cancer Foundation, National Breast Cancer Institute, and the American Cancer Society are all good site to learn more about Inflammatory Breast Cancer, they are all written in a different manner, so check them out and read the one that speaks to you.

I was beside myself for those few days, only my meditation got me through, but I still had a vertigo attack the day before my mammogram. Even now my head is spinning (not literally this time) that I had no idea about this kind of breast cancer, and how fast things like this can happen. I really thought that all of my chronic illnesses had made me realize how precious life is, and that I should never take anything for granted, but when I thought about possibly having this, I thought….. I’m going to stop putting off things! I decided right then, I’m going to always live as if I only have 5 years to live. Stop putting everything off because I don’t think I deserve it because I don’t contribute, because I’m sick all the time. If there is something I really want to I’m going to try and do it if it’s at all, yep, I’m going for it! I don’t want to regret that I didn’t do______________.

I really never thought I would feel that way. I realized recently how many things I don’t do because I’m afraid of how I will feel the next day. Because I don’t have enough “spoons”. You know what? I’m going to borrow those spoons from tomorrow, and of tomorrow comes and I can’t get out of bed, so be it. There are a lot of times I can’t get out of bed even though I did do what I wanted.

I thought I lived my life to the fullest and didn’t worry if my life came to an end tomorrow, but when this scare came up, I thought…”I won’t be able to do ____________, or _____________….why didn’t I do __________….Stuart and I never got to ___________.” That has to change. Sure finances stop a lot, but we can’t save for a tomorrow that may never come. Some things we need to do now, instead of saving for the bigger things later. We need more joy in our lives today. We need to dance in the rain more often.

On a different note…..

We went to the class about for people having knee or hip replacements at the hospital this week, right before my Pre-Op appointment (yes, I’m healthy enough go through surgery). Everyone in my class was having a hip replacement. The person teaching the class started by saying that most everyone there was probably there because they had arthritis in their hip I shook my head, no. She looked at me, sitting in a wheelchair and said, “Do you have Avascular Necrosis?” I shook my head, yes. She said, “I’m so sorry, that is so painful.” Every eye in the room turned to me. I have to say, I was wondering why everyone there was able to walk in with no cane or anything. Only one person had a slight limp. I had to remember that I can’t judge their situation, I have no idea what is going on with them. I was just surprised. When they told me about this class I thought, “Really, they expect people who are having a hip replacement to sit through an hour long class?” It seemed to be no problem for most people.

I kept wondering why they didn’t give out the hip motility items, before surgery, I know I need all of the help I can get now, and assumed everyone did. I know now, not everyone needs so much help before surgery. (The hip motillity items I’m refering to are the devices we get after surgery. A walker, cane, 3-in-1 toilet, shower seat…..ect)

I do have a walker, 2 actually, one that is very sturdy and will help me when I’m starting to walk again after surgery (and helps me a lot now); another that helps me more with my balance issues, it has a nice seat and everything. We put in a bar in the bathroom. It has helped me a lot so far, and will continue to help me even after the surgery with my balance issues. I’m really looking forward to getting everything else. Our insurance covers motility devices, Stuart is going to call on Monday to see if they will cover some of these things if we buy them instead of getting them from the hospital. The person teaching the class sounded as if they will, and it will cost less. Also, some things they will give me at the hospital isn’t going to work as well as some things I could get on my own. Crossing fingers here….or we may just be getting some things on our own, without insurance help.

My surgery will last at most an hour….probably less. Then I go to recovery….they have a fancy name for it, I don’t remember it. I will have a nurse assigned just to me. I thought that was pretty amazing. After a few hours there, I will go up to my room. I should walk a bit that day. It really depends on how the anesthesia affects me. I won’t be having traditional anesthesia, I will be having a spinal block, much like an epidural a woman has when she has a baby. I will also have an anesthesia much like what you get when you have a colonoscopy, so I won’t under general anesthesia. Therefore, there are a lot less risks.

They will spend a lot of time with me in the hospital to make sure I know how to take care of myself when I get home. Stuart will also be there to make sure he knows things too. He has to be with me at home all the time the first few days. I will have a Physical and/or Occupational Therapist come to my home 2-3 days a week. So I can’t be slack with my therapy! haha No worries with that, I really want to get to moving as quickly as I can!

Surgery is 9 days away. In the past couple of weeks I’ve had vertigo so much!!! I hope I’m getting it out of my system. I still haven’t figured out how I’m going to have an attack and not forget all about the rules when it is going on. But I will make sure I know how to do these things before I leave the hospital. I have special needs and I will make sure they are addressed. That’s what it means to be are an advocate for yourself.

Don’t want to count my chickens before they hatch and all of that, but…..

Soon I should be able to dance in the rain with much less pain!

Surgery Date, and Vertigo

On March 17, 2015 By WendyIn Avascular Necrosis, Chronic Illness, Hip Replacement, Meniere's Disease20 Comments

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.

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

On March 4, 2015March 4, 2015 By WendyIn Avascular Necrosis, Chronic Illness, Meniere's Disease6 Comments

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:

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?

Avascular Necrosis….that’s a scary diagnosis

On February 26, 2015 By WendyIn Avascular Necrosis, Chronic Illness15 Comments

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

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?

I’m not going to read anything else about Avascular Necrosis, or Hip Replacement Surgery.
I’m not going to talk about it….well not much.
I’m going to meditate.
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.
Spend some quality time with my husband, something we haven’t done enough of lately.
try my best to enjoy myself….laugh!
eat good and healthy food. I made up a new recipe, I hope Stuart’s up to trying it out.
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.

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

On February 10, 2015 By WendyIn Chronic Illness16 Comments

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.

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!

Picnic with Ants

Tag: Hip Pain

Good – Bad – Ugly…. Sometimes it’s Pretty, isn’t it?

Hip Replacement Week – 6

Chonic Pain/Ilness Photography 2015 Project Week 3

I Didn’t Expect

4 days…….What if?

When it Rains…..

Surgery Date, and Vertigo

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

Avascular Necrosis….that’s a scary diagnosis

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

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