Doctor of Pain

On November 7, 2019 By WendyIn Chronic Illness15 Comments

We have a little joke in our house about how the Pain Clinic sounds like it’s a place where you are going to get pain, a little S&M anyone? It should be called the Pain Relief Clinic don’t you think?

My migraine doctor (a neurologist that specializes in headache disorders) said she was sending me to a pain specialist for my neck pain; you can understand my confusion when I ended up at a Spine and Sports Medicine Center. I’ve been to a sports medicine center before and it was filled with lots of sweaty people doing exercises and recovering from surgery. To say I was a bit wary of this appointment was an understatement.

The confusion ended once I talked to the doctor. This may be called a spine and sports medicine center, but it’s not like any sports medicine center I’ve been to before. Stuart actually said he wondered if they used that name because of the negative connotation association with pain clinics. I think it may also be because they mostly treat people with spine issues. But yeah, this was different.

They took a thorough history, that was very hard for me to go through, I kept breaking down when I was filling out the paperwork as I was realizing just how long I’ve been living in pain.

These are the things, that I know of, that are causing pain to my head, neck, and back area (this does not include pain in other areas). In 1973, at age 10, I broke my right arm and found out I had a bone tumor, that would end up with 5 more breaks, and a major surgery including a bone graft in 1978, leaving me with my right arm shorter than the left and recurring pain. May of 1974 I had my first migraine, two months later I woke with a headache that never went away. In 1991 I fractured my 7th cervical vertebra, and had a severe contusion to the back of my head (I now have arthritis in my neck). In 2016 I had akathesia as a side effect from a medication that has left lasting effects to my back. I hope that doesn’t sound like I’m whining, really I’m not, it’s just the way it is.

After we talked about all my symptoms, the different types of pain, the numbness down my arm… and after we went through all the things I’ve tried to relieve my pain….PT, chiropractic, supplements, Botox, medications, acupuncture, massage….and how little they worked we discussed my next option, injections.

The first injection I’ll be getting is on Monday, it’s a corticosteroid injection to the right and between the C-7 and T-1 vertebra to address the nerves that run down my right arm. Every day I wake up with my right arm in severe pain and it has electrical sensations running down it, and my hand is weak. They decided to address that first. I’m very nervous about getting any steroid injections because of the risk of Avascular Necrosis. I had AVN in my left hip causing me to get a hip replacement, they believe it was caused from steroids. You can read more about that here. She said that most of the injections in the future would not be steroids, so hopefully this won’t do any harm. But what choice do I have? My quality of life is greatly diminished right now.

She sent me home with a prescription for a muscle relaxant and orders for an x-ray. Now I’m just waiting for Monday. I’m slightly nervous about this only because I was asked if I wanted sedation. Why would someone need sedation for this? They give you a local before the main injection. I’ve had major injections in my hips, and I’ve had lumbar punctures and patches in my spinal cord, I was never offered sedation for those. Am I wrong about how bad this is going to be? I had an injection for pain in my neck when I fractured it many years ago, I didn’t have sedation then. I was given something to calm me and it made things a little hard actually because I couldn’t stop laughing.

Have any of you had these kind of injections? What was your experience?

#HAWMC Day 29 My favorite #HAWMC blogger post

On November 29, 2016November 28, 2016 By WendyIn #HAWCM, Chronic IllnessLeave a comment

Today is Day 29 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge). The prompt today is:

Have you checked out fellow HA’s pieces for our HAWMC?
Choose one of your favorites and repost it to your blog.
Be sure to include a few sentences on why you love this piece!

There are so many great blog posts by bloggers contributing to WEGO’s Health Activist Writers Monthly Challenge (#HAWMC2016) I had a hard time picking just one. I also had a very hard time going back and reading over all of them to pick the best one I could find. You see I’ve been having vertigo a lot recently so completing this challenge has been a big challenge for me, but it looks like I’m going to do it!

This blog post by Julie, on her blog It’s just a bad day, not a bad life, is titled Dear Julie, An AVN Diagnosis. I picked this post because I too had Avascular Necrosis. I’m lucky that mine was taken care of with a hip replacement, but I know it could show up in other joints. This letter explains AVN and other illnesses Julie has, and how she is persevering every day.

dear-julie-a-letter-to-myself-post-diagnosis

(below is a repost of Julie’s post. To see the original please click on the title of the post, I follow Julie on her blog, It’s just a bad day, not a bad life, and on Twitter, she is awesome.)

Dear Julie – An AVN Diagnosis Letter

Avascular Necrosis. WTF?! Like, what the hell.

I didn’t even know bone could DIE?! THAT’S A THING?! WHATTTT!?

For the past few months, you KNEW something was wrong. Something was off. There was no reason you should have been in that much pain.

Yet, your healthcare team told you otherwise.

“Oh, you’ve just overdone it at therapy. Take these Percocet’s and rest for a week.”

“There’s nothing wrong with your knee, you’re just healing.”

“Just keep pushing through. Once you have your range of motion back your pain will subside.”

“Here’s a kenalog injection and a higher dose of pain pills. Come back in a week.”

BUT YOU KNEW BETTER! You KNEW there was something seriously wrong.

December 17th will be a date that you’ll never be able to get out of your mind. Today, when you crutched your way into that doctors appointment, I know you wished that something would show up on your scans. Last week when you had your bone scan done, the technician told you you “lit up like a Christmas tree” (which you loved the holiday reference btw. It was kinda perfect), you knew you’d get answers today.

But the answer you received was NOT the answer you thought.

You anticipated him saying that your ACL finally finished tearing apart or that there was a complication from your last surgery. But that wasn’t even remotely close to the case.

You’ll always remember the look on your doctor’s face when he walked into your examination room.

“Your bone is dead. It’s called avascular necrosis. I know what it is, I’ve seen it before. But I don’t know how to treat it and I don’t really know where to send you…” will echo through your brain for YEARS to come.

You mind will race and question the fact that he told you you’d probably need a knee replacement. Then you’ll think about how he said you can only get 2 in your life. . . and that will spiral into you crying about how when you’re 60 you probably won’t be able to walk.

Your Dad will joke about how once you’re 60 you’ll probably be able to get avatar legs. But it won’t make you feel any better.

Tonight you’ll spend your evening crying.

Crying about how you may not walk again. Crying how you’ll probably need a knee replacement. Crying how your pain IS valid and that there IS something seriously wrong. Crying because you have no idea where to turn.

And while you’re crying, your parents will be crying too.

Your mom will be upset because she can’t wrap her brain around this diagnosis and your dad will be in shock with the news and wish you did something sooner.

You’re 27 years old and 2 parts of your bone are DEAD. It’s going to take some time for you and your family to wrap your heads around it. BE PATIENT.

I know you’re in pain. So much pain that you’re unable to sleep. You’re exhausted. You’re worn down. You’re a wreck.

But, you don’t need to be a hero when it comes to dealing with this pain.

Your parents will ask you numerous times if they should take you to the hospital to help your pain. You’ll pass it off as you’re fine.

But you’re not fine. Take them up on that offer and GO.

Picture from the first hospital room I was in during my week long stay. Dear Julie, A Letter to myself after receiving the diagnosis of Avascular Necrosis, Psoriatic Arthritis, Complex Regional Pain Syndrome itsjustabadday.com I know you want to celebrate Christmas and enjoy it, but you’re not going to enjoy the day. You’re going to end up passed out for the majority of it because you finally caved and took high doses of pain pills. You’re going to end up going to the ER early in the morning the day after Christmas because you’ve hit a breaking point.

Don’t wait – go earlier.

You’ll spend a week in the hospital and you’ll start to get SOME answers. You’ll receive 2 more diagnosis – Psoriatic Arthritis (officially, after having first heard it back when you were a teenager) and Complex Regional Pain Syndrome. As you leave the hospital, you’ll think that your AVN is the thing you need to treat first. . . but it’s not. You need to take care of YOU and calm the storm in your body before you even find a solution for your knee.

Oh, and also… Just to set realistic expectations. Don’t plan on counting on your orthopedic surgeon. He’ll provide you with no helpand will just frustrate you more than you need. Your Dad will take it pretty hard, but just know, in the end, you don’t end up needing this doctor. He actually does you a favor by stepping aside because it forces you to go out and find the best possible solution for YOU.

Put on your armor, because it’s going to be a battle for the next few years. You’ll face injections, pills on pills, stomach issues which make you unable to eat for months, nerve blocks, anxiety, depression, melanoma, rejection from over 29 different health providers – just to name a few of those battles.

But guess what, you’re going to be fine.

Actually, scratch that.

You’re going to be more than fine – you’re going to come out on TOP.

You’ll end up changing your whole life to manage your conditions.

You’ll end up having your path redirected to be exactly where you should be.

And, you’ll end up blossoming into the person that you’ve always wanted to become.

You’ll never define yourself by the diagnoses that you receive in December 2012, but you’ll use them to help fuel your passion, motivation and to help others.

I love you and you’re strong.

You’re going to get through this. One day at a time.

SPOILER ALERT: In a few Christmases time, you’ll get to film this video and be well on your way to recovery from your Avascular Necrosis. And, you’ll end up speaking at an FDA hearing regarding stem cells because of your AVN! GRAB THE TISSUES!

Wishing You A Pain Free Day!

Julie Cerrone | Spoonie, Autoimmune Warrior, Certified Holistic Health Coach, DoTerra Wellness Advocate, 200 RYT Trainee, Reiki 1, Nutrition Geek, ePatient Advocate, IT Consultant, Pittsburgh Based Practitioner Living the Chronic Life

This post was in response to the WEGO Health HAWMC prompt:

Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.”

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.

Does a House Make a Home? uh, oh….guilt followed me home

On September 13, 2015September 13, 2015 By WendyIn Chronic Illness9 Comments

written but not proofread…..that’ would be a big reason I don’t publish as much as I should….I reread things and think they aren’t good enough…whey would anyone care?….Oh I shouldn’t say that! ect….ect… So here you go, what was on my mind…. and another little painting I did on my phone.

We moved a year ago.

We haven’t sold our house.

Turns out we can’t. Sounds kind of odd huh? Technically we could, but it would have to be for much less than we owe on it, and much less than we had offers on it. We would have to do a “Short Sell”, and ruin our credit.

How does that happen? Foreclosures in our neighborhood. Due to the foreclosures our house is appraising for much less than it should. There are other houses in the neighborhood in the same predicament we are in. It’s really hard when we had 2 good offers and they couldn’t get loans because of the appraisal. I do not understand why the amount the foreclosed houses sold for has anything to do with the amount our house should sell for, but the appraisers have this magic formula they go by. News Flash! That magic formula, does not work! We had our hopes up a little bit because one of the other families trying to sell challenged the appraisal and everyone thought they would beat it. That the numbers would change. They lost, and everything stayed the same. That was a sad day.

What do we now? Rent it.

For a little over a year now we have been paying rent and a mortgage and all the expenses that come with both….like utilities, insurance, and for the house….HOA dues, lawn maintenance…..ect. I don’t talk a lot about money on here, we have been lucky, Hubby has had good jobs so we haven’t had to worry about paying for the necessities, medical insurance, and my bills…ect. Right now, things are tight. We don’t have debtors knocking at our door, but I’m not comfortable with the situation. It is making me feel even more guilty that I can’t work….that I can’t help. Hubby had to take a big pay cut for this job. He didn’t want take a job that didn’t give him very flexible hours so he could come home if I needed or that prohibited him from being able to take me to doctor appointments. That was hard. Another thing, I felt very guilty about. He was out of work for 16 months, it was hard to find a job with these requirements. (Well I have to admit, it was hard to find a job at the time anyway.)

This whole situation has been tearing me up inside. Because of the Avascular Necrosis, and the increased vertigo and migraines, I wasn’t able to travel back and forth to help get the house ready to sell, and Hubby didn’t feel like he could leave me alone to go take care of it, and we sure didn’t have the funds to have professionals come in there and take care of everything. So it took many months to get the house on the market to begin with. (More Guilt – a pretty useless emotion in situations like this…but I just can’t help it.)

So, I’m stuck in this city, alone. There is no one for me to call on for help if Hubby goes out of town. My cousin and his family live fairly close, but it would take them at least 45 minutes to get to my place. If I fell, or started having a scary vertigo attack…45 minutes or more, could feel like forever. However, I wouldn’t want to call an ambulance unless it was a true emergency..and yes I would call them for that. (yes I learned my lesson after I broke my foot) Often need some help, but not a hospital. Plus, who would come and get me and take me home? Hubby would be 3 hours away, and he sure doesn’t need to drive under that much pressure. Plus, my darling husband would be so worried the entire time he was gone, he wouldn’t get much done, so why go in the first place. (G-U-I-L-T….don’t fuss at me…I know, I know, gotta get over it, I was better about it, I’ll work on it.)

We had to depend on the kindness of others to help us. Our amazing neighbor helped us so much. She ran a yard sale, and got so much stuff out of the house. Another friend of mine, came and got a huge amount of stuff out of the house. Yes we downsized so much, many people helped by getting things, and a dear friend came over many weekends and helped sort, and clear things out. Moving from our house, to a little bitty duplex, was very hard….just physically getting rid of things. I have become a firm believer that I don’t need much. Especially since I’m sick. I got rid of a lot of stuff, and most I don’t miss at all. I gave away most of my art supplies. now I miss it. I do think it will get better when we get settled some place, but right now, we live in a place that is just so…..not a home. I miss seeing things where they are supposed to be. I hate seeing things that look out of place because they just don’t have a place. It looks odd. Our couches wouldn’t fit in this small place, so we had to get something else, it doesn’t look like us. Then I had to get a recliner when I had my surgery we were forced into something that really doesn’t match anything because of the short notice, and it’s hard to find one that doesn’t rock. I really tried to make this place feel like us. I have paintings and photos all over, we really tried to make it comfortable, but it isn’t.

The duplex is now….falling apart….No…really! The floor started buckling up, and last week the vent in the floor kind of exploded. When it started we thought it was water damage. It started last year, and we told the landlord. The caulked the window, even though there was no sign of water coming into the window. It seemed to stop during the winter. When it got warm it started again, now the floor is bulged out about 6 feet into the living room…in waves. It’s dangerous. The landlord is finally paying attention (after I mentioned it was dangerous, and I tripped). They finally had a professional come out and look at it yesterday, and it looks like it’s termites. It will take at least a week to fix it and they will be tearing up the whole living room floor and the hall that goes to every other room in the place. We could not be here, and neither could most of our furniture. So we kinda need to move. Before they found out it was termites, Stuart asked if we could wait until the house rents, and the landlord said yes. Now, I’m not sure he will say that, termites causing damage may trump us needed to wait on money.

What do we do if we have to leave early? Take money out of retirement, of course. Hopefully our house will rent fast. If not, that will not be good. When we move we will have to pay a new pet deposit, higher rent, a deposit (who knows how different it will be from here)….and someone to help us move….and who knows what else we have to add to this. Hubby is never going to be able to retire.

When I’ve been back to the house, it has hurt so much. The last time I lived in a house that was owned was when I was in the 7th grade. My parents moved that year and we started renting then. My father still rents the house he lives in. I always felt odd that we didn’t own the house we lived in. I always thought, if they changed their mind, we could possibly not have a place to live. When I was almost out of high school, the heating system went out in one place we lived in for a long time, and the owners decided not to fix it, we had to move. My father still lives in that house, I never felt like it was home.

After I moved out, I rented. I never felt like I had a home. Funny thing though, I’ve lived in two places that I rented that I felt comfortable in, one was a condo that I shared with a girl who is still one of my very best friends. There was one house Stuart and I rented that I felt could be our home. Then something happened to the house and again the landlord didn’t want to fix it, and we had to move. My heart broke.

Finally we bought a house. It took me a while, but I felt like it was our home. I had a little herb and wild flower garden in the front, I had a big kitchen I could go crazy in, I had a room that was all my own that I could create art in…we had a place that we could call home. That meant so much to me. As I got sick it was harder to go up and down the stairs, but I managed. We realized that the house was just too big since I couldn’t maneuver the stairs any more, and I couldn’t really create art like I used to, and we weren’t going to add any children to that big house. We thought about selling and buying a new house, but we were going to wait a bit until the market came back up a bit. Then….Hubby lost his job and things had to change, fast.

artrage watercolor of one of the wildflowers from my garden. by w. holcombe 2015

I went to our house recently. Now, my little garden is gone. It is a patch of dirt, grass, and weeds. The house looks so odd being empty. It needed to be cleaned, painted…and some various things done…..I cried, just a little, I knew it would bother Stuart. He doesn’t understand how I feel. I don’t understand how I’m feeling.

Home is not a House.

Home is where my love is.

Home is where Stuart, Max, and Kiki are.

as long as we have our necessities taken care of, what else should I be worried about.

I feel lost.

and I feel GUILTY is it completely stupid…maybe.

But let’s face the facts, people with chronic illnesses often feel guilty about …. a lot of things that they have no control over.

And I’ll talk more about that later. I’m just way too tired to talk about it now.

At a different time, This post would not have been posted because I would have gotten here and gotten overwhelmed and decided I didn’t want to show everyone how I was feeling and not end a post on a more positive note…..but today…..I’m just writing….

But know….I don’t let this guilt consume me.

One of the BIGGEST things I believe in is COMPASSION. I bet almost everyone, if not everyone, reading this post also believes in compassion. (a lot of shaking heads out there…yep, you are agreeing huh?) Then why is it so hard for us to be compassionate toward ourselves? Yes, I feel guilty over things I have no control over. Then I sit my butt down and have a little cry….yep I get all over whelmed with all of this and just cry….then I talk to me, like I would talk to you….and I feel that wonderful feeling toward me….compassion.

And the guilt isn’t so big any more.

Sure sometimes it seems to build back up and crawls back up on my back, but I’m a pretty compassionate woman. I can reach out and feel compassion for others and me.

There are other ways to deal with the guilt, but I think that compassion is the best place to start.

Heck…I think compassion is just a pretty good place to start…….period.

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 2

On May 13, 2015May 13, 2015 By WendyIn Chronic Illness, Chronic Pain, Photography4 Comments

The second week of the Chronic Pain/Illness Photography Project I have been participating in on Facebook has been amazing. The people who are contributions and contributors are amazing. This has become so much more than just sharing photographs, we are sharing our deepest fears, pains, joys, loves….our lives. The support that has been given and felt is nothing like I expected from a Photography Project. The project has been consuming. When I’m not working on the theme for the day, I’m looking at contributions, reading stories, commenting, sharing….when I’m not actively working with the project I’m often thinking about the people, or a certain entry that has touched me. This project will touch me forever. I hope you enjoy my interpretation of this weeks prompts…..

Day 8 – Affirmations

I try to live a mindful life. These quotes help me remember to live in the now, and remember that my body, just as it is right now, is just fine (I’m only human).

I also try to remember to be gentle with myself, I’m the only me I have. (I have a habit of beating myself up a bit, expecting more out of myself….my doctors, and my husband have often told me to give myself a break..I’m learning to.)

The photo on the left I took of my toes in the ocean, with a quote by James Baraz –
Mindfulness is simply
being aware of what is happening right now without wishing it were different.
Enjoying the pleasant without holding on when it changes. (which it will)
Being with the unpleasant without fearing it will always be this way. (which it won’t) – James Baraz

On the right, a photo my husband took, with a quote by Pema Chodron –
Realize that this very body,
with its aches and its pleasures….
is exactly what we need to be fully human,
fully awake, fully alive.

Day 9 – Support.

The greatest Support I have is my husband. This photo is from our wedding. When we got married, 10 1/2 years ago, I was sick, but not nearly as sick as I have been in the last 5+ years.
He had no idea what he was getting into, but he has always been my greatest support. He is always by my side, always holding me, understanding when I am a complete bitch to him, helping me with the most humiliating task, watching me go through numerous painful medical tests and treatments….he is the only one bringing home any finances, and he also cooks, cleans, takes care of our pets and me.
I feel he has sacrificed so much to give me the best life possible.

He says I am his support, that I am what gets him through the day, I am his inspiration….He tells me he was a selfish person before me, that he strives to be a better person because of me, he tells me that nothing he does is a sacrifice because he’d rather be with me, than do anything without me. How can this be? How can he give me so much, and still think that I am an equal in this relationship?

Our relationship gets better and better. (we did go to therapy to help deal with me losing my independence and understanding how to deal with a chronic illness. The therapist I went to, and soon asked my husband to join the sessions, works a lot with people with chronic illnesses.)

Our relationship is really my biggest support. Together, we can do this.

Day 10 – Comfort

Comfort comes in all shapes and sizes for me.
When I first thought what I reach for first when I need comforting, I thought of my Monkey. I got him right before I first started getting really sick. He has seen me through a lot. He not only cuddles with me, but he makes a great neck pillow, a lumbar support…ect. I take him just about every where. Yep, this grown woman takes her stuffed animal to the hospital with her!My painting of Buddha meditating represents my mindfulness practice, and meditation. Mindfulness practice has been a great comfort to me. I think it has helped me more than most medical treatments. I have also begun to study the Buddha’s teachings in the past few years and this has also been a great comfort to me.

The photo I took of the wild flower with the little bee on it is comforting to me because it reminds me to appreciate the little beautiful things I see, and not get so caught up in all the pain and suffering. It reminds me that life is constantly changing, just as the seasons change, my life is changing….I take comfort in that.

Day 11 – Who I Was:

This was the hardest prompt for me to date. It brought up so many emotions. When I first read “Who I Was”, I thought, I’m still the ME I’ve always been, yes, I’m sick, but I’m ME….then I started looking at pictures…thank goodness I don’t have a lot of photos of the “before” pictures on my computer. This brought up a lot of emotions. Emotions I thought I’d dealt with a long time ago. But grief isn’t linear, and right now, I’m grieving a bit for some of the old Wendy…..this just touches on some of the old me…A little of Who I Was….
top left: a selfie with (my then boy friend) now hubby – a little sexy thing. I miss feeling sexy, or being able to have sex without pain, or being able to have a normal sex life….no, to be honest, I really miss having a wild sex life! I finally met the love of my life, and not long afterward my sex life was ruined. I’m not that me any more.top right: I’m in the front on the left. This is a birthday party for one of our old friends. This was a normal occurrence before I was sick. I was social, I entertained. I went to museums and art shows and parties…… I had a lot of friends. I’m not that person any more.

bottom left: Me on the left with a friend at the NC State Fair. I was spontaneous, I could run, and jump, and play….I loved playing with kids. I was FUN. (sometimes I still am, but it’s hard..it sure isn’t spontaneous, and I pay for it afterward) I used to do these things without fear. I can’t do that any more. The now Wendy is full of fear.

bottom right: Me cooking…well baking…well, enjoying the products from baking…haha. I love to cook. I love everything about it. I have fructose malabsorption, I’m allergic to wheat, I’m hypoglycemic…..ect… These things, well yeah, I’m sick with it, but it didn’t matter much except when eating out, because I loved to cook! It was just a challenge. I loved to play with ingredients and learn to make new flavors with the foods I can eat. I had a gluten free food blog with close to 2,000 followers. Suddenly my balance issues got too bad. I was having too many accidents in the kitchen. I can’t cook now. I really, really miss this….this is one thing I hope I can get back. I can’t drive either, but I’d rather be able to cook than to drive. And I live in an area where I can’t really get anywhere without being able to drive.

Day 12 – Motivation

LIFE – My little flower represents life….even when it isn’t supposed to be there.

Much of what I’ve already posted are motivators to me, however, I think the thing that motivates me the most is life. I want to live my life. It may not be the life I expected, but it’s still my life. I’ve learned to change those expectations…and simply live day to day.

I read something recently that stuck with me.
Sometimes the best way to motivate yourself is to stop trying to motivate yourself. (That really hit the nail on the head with me. Sometimes I have a hard time getting motivated, especially when I’m depressed. Sometimes I just have to act.)
You do not need motivation to act.
You do have to make a conscious decision to act.
The action could be big or small.
It may not turn out the way you want.
How you feel about that is irrelevant.
(OK…that part is really hard. for me this part means, being ok with how things are, no matter what happens.)
Actions move you forward.
Waiting for motivation keeps you stuck.
What you do with this information, you do in this moment.
The decision is always up to you.
(this came from a website called mindfulness over matter)

I also have to remember to always be gentle with myself and forgive myself if things don’t turn out as I planned. If I can’t get motivated or even act on something sometimes, it’s ok, forgive myself and move on. Give myself a break.

Day 13 – Challenges

Whew – To sit down and think of all the challenges I face each day, I couldn’t sum it all up here. It was difficult to pick what to share with our group.

In the center of my collage you will find a lot of spoons on the floor. If you are acquainted with the spoon theory you will probably understand this immediately. If not, I recommend you read it, you can find it here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ I haven’t been the biggest fan of the spoon theory myself, because there are many days I have no “spoons” and I still do things, sometimes you just have to push through it or you don’t make it to that doctor’s appointment you made 3 months ago (yes, I’ve still had to cancel those way too many times). But for me this represents all the challenges I face on a day to day basis that take every bit of my energy, or that I have to get up all my courage to do (like take a bath or shower) that normal people have no problem with.

From there we will go from top left to right around to the bottom left.

Selfie of my incision after one of my ear surgeries. This represents the challenge that I’ve had many surgeries on my ears and they are still ruling my life. Between the vertigo and the lack of hearing, causing me to shy away from social interaction and have fear almost every moment of the day that I will be attacked by my own head and lose control of my body.

The next photo represents one time I had vertigo when in public and was stuck in a parking lot of over 4 hours, I was 1 mile from my home. I finally got my husband to get me home, I ended up having a violent attack for over 9 hours. I thew up most of this time and lost control of all bodily function. It is a huge challenge to get over my fear of having vertigo in public and just go out, and it is a huge challenge swallow my humility and allow my husband to take care of me and clean me up when I have soiled myself.

The last on the top row, another selfie, represents my challenge of living with Bipolar I disorder. I have been mostly stable for about 20 years, but it is still a challenge. I have to be very dilligent about taking my medication and taking care of myself. I have to really pay attention to my body and my mind. If I notice any symptoms returning I need to get in touch with my doctor immediately. There is always a chance the medication my stop working. Having Bipolar I is classic Manic Depression, and it is very challenging.

The middle row left is a do not disturb sign from a trip my husband and I took before we were married. This represents the challenges I have having sexual relations with my husband. If anyone wants to talk about this, I will be more than happy to. I know this is something that is very hard to talk about, but it is very important to break down that barrier. You are not alone.

On the middle left top is a self portrait of me painting. This is a big challenge now. I can paint, but I get confused. There are many days I simply can’t paint due to pain, but I also have a hard time with subject manner and style. I feel more empty inside about my art. I would like to put my illness on canvas to get it out, but I just can’t. I’ve done a couple of commission pieces, but I have to have no deadline. It’s simply a really big challenge. My doodles make me happy, at least I’m doing something.

Just below, you will see my arm with many hospital bracelets on me. This is actually from my last visit to the hospital. This represents the challenge of having to go to the hospital so much. To so many doctors. To owe so may hospital and doctor bills that only my husband can pay. To me it even represents fighting for disability.

On the lower left you will find my Headache Pain Scale. This represents the challenge I have always found in telling doctors how I feel. I don’t feel that doctors really understand patients a lot of the time. I’m lucky I have many good doctors. I’m also lucky that I have the kind of insurance that if I don’t have a good doctor I can fire them. (and I have) But finding a doctor who really understands is a challenge. (also not being able to hear makes it hard for a doctor to make himself understood to me….we definitely can have communication troubles.

The last photo on the bottom left represents the unknown. They have come to the point that they have told me that they don’t know what is wrong. We know I have a vestibular illness, probably more than one, but they don’t know what. I have been told for many years I have Meniere’s disease. I have been through more tests and treatments than you can believe, now I’ve been told, they can’t do any more. I’m stuck with the unknown. There are other conditions they don’t know about, the Avascular Necrosis in my hip, they don’t know if I will get it in other joints….good chance. Some doctors have said that other diseases I have may all go together, other doctors say no? I think my body may hate me. The photo is an x-ray of my hip on the left, and a photo of my ear on the right that I have manipulated beyond recognition.

These are some of the challenges I face. Sorry I couldn’t keep it shorter

Day 14 – My Body

It’s cute….but very fragile.
(note, I could never get in this position, not now, but I used to love yoga, I could have…)

*this is a straw wrapper version of me, created one day when I was playing with the wrapper from my hubby’s drink.

As you can see the Chronic Pain/Illness Photography Project has become much more than sharing photographs. Everyone in the project is sharing a part of their soul. I feel so honored to be a part of this project. One week to go…..

Chronic Pain/Illness Photography Project

On May 3, 2015May 3, 2015 By WendyIn Chronic Illness12 Comments

Starting on April 26th, I’ve been participating in a Chronic Pain/Illness Photography Project on Facebook. It is a closed group, but I wanted to share my photos here. By the way, if anyone wants to join the group, you can enter at any time. You can complete the previous projects if you would like, or you can start of where we are now. So far, it’s been a lot of fun, and a lot of support and camaraderie between between people who “get it”.

Many of these photos my long time readers may have seen. Some are photos of my artwork. (I can’t really get out and create many new photos right now since I’m recovering from hip replacement surgery.)

Day 1 – Hope

I made this for one of my doctors. She gives a lot of people hope. Unfortunately her treatment didn’t help me for long, but I always have hope, not necessarily for a cure…..Hope springs eternal.

Hope... for Dr. Gray by w. holcombe copywrite 2014 — Hope… for Dr. Gray
by w. holcombe copywrite 2014

Day 2 – Loss

This photo represents losing my hearing, and much of my balance due to one of my illnesses, Meniere’s Disease.

Fractured Ear
manipulated photo –
by w. holcombe

Day 3…Today.

Today I got my bandage off from my hip replacement, all looks good there! You can’t tell in the picture, but I have 6 stitches you can see, but mostly I’ve been glued together, it looks pretty cool.
I haven’t felt good today. The nerve in my back is acting up and my leg is in a lot of pain. I didn’t sleep much last night.
My monkey is guarding my hip that was just operated on so my dog or cat can sit on my lap. In this photo, Kiki is keeping me company. We rescued Kiki right when my hip/back started hurting. The doctors thought I’d just strained it when we moved. I had no idea I’d be hip replacement surgery just 7 months later because my femur head was collapsing because it was dying. Avascular Necrosis sucks. and mine was caused because of over use of prednisone. Doctors caused this disease by treating other diseases I have with too many steroids. If I’m lucky it won’t attack my other large joints. I’m 51, in the last 3 years, I’ve gotten 2 artificial ears (Cochlear Implants) and an artificial hip….no metal detectors for me!! haha.

I’m not complaining, honestly….it’s just the way it is.

and when my hip heals I’ll be able to walk!!
Woo Hoo!!

Wendy Hip Replacement Recovery - April 2015 photos by w holcombe — Wendy Hip Replacement Recovery – April 2015
photos by w holcombe

Day 4 – Self Portrait.

This looks a little depressing, but I’m not..not today. I just like this self portrait of me. I took the photo in the bathroom mirror, and manipulated it on Photoshop. It shows part of my cochlear implant.
Some days are better than others….this day was a rough day. Taking the photo helped me get part of those feeling out, and helped me explain them to others.
I still have a hard time with my cochlear implants at the time. My hearing isn’t supposed to fluctuate with them, but it does…a lot! I’m lost, often. People don’t understand why I can’t hear when I have these devices. For those who don’t know, when someone has a hearing aid or other hearing device, it does NOT allow you to hear like a normal person. We often miss a lot. Often HOH/Deaf people won’t tell you they are having a hard time hearing.
I speak up, but it’s amazing how many hearing people don’t hear me. 🙂

Wendy charcoalwithCI — Wendy with CI – manipulated photo – by w holcombe

Day 5…Tool Kit.

(sorry I’m a day late, yesterday I had a 12 hour vertigo attack…yuck….happy I wasn’t alone, and the violent spinning didn’t last long, I spent most of the time in slow spins…it’s still miserable, but it could have been much worse!) I have a few tool kits, emergency kits…..I believe in being prepared. smile emoticon This is my medication kit.
Top left – all closed up and ready to go. Top right – top part is open, this is where we store my shots and things that are needed for that, and other little things. Plus my med list, with all meds I take listed, pharmacy, prescribing doctor…ect. I also have this list with me in my wallet too. (this includes supplements and everything) Bottom left – bottom part of container is open and top of pill bottles showing…..the “A”s stand for A.M. or Morning, “P” is P.M. or Evening, AP are pills to be taken in the Morning and Evening. If there is a number on the top then I take more than one. I line all of these up and fill up my pill boxes…you can see those on top of my medicine box Bottom Left. I have two morning boxes because I have to take 2 pills before breakfast and the rest after breakfast.

There’s more to keeping up with my meds, but that’s my medicine box. If I’m going out of town for more than a couple of days, I just grab my box. It really has helped me to stay on track, and know when I need to refill my meds, to buy more supplements….ect. It also helps me keep everything in one place. I love my medication kit.
So this is ONE of my tool kits.

Day 6….Acceptance.

One day after hearing me talk about how hard I had been fighting, a fellow Meniere’s patient told me that perhaps I should learn to walk with old Mr. Meniere’s instead of fighting him so much all the time. I had never even thought of that. I knew this disease had no cure, but it never occurred to me to not fight it tooth and nail. Suddenly it hit me, I had to accept it as part of me. I can’t get rid of it, some days may be better, but it will always be there. I accepted it. Once I did, things got much easier. I have a number of other illnesses, I’ve accepted them all. Meniere’s Disease was the hardest to accept….it comes packed with a lot of stuff….and mine is a very complicated case. (my doctors at Duke now say I have “more than Meniere’s”, they have no idea exactly what I have. I have a several complicated vestibular disorders.)

I drew this little doodle one day to show I think I’m perfect just the way I am.

I am (imperfectly) perfect - by w. holcombe — I am (imperfectly) perfect – by w. holcombe

Day 7 – Grieving:

This was a hard subject for me to figure out a photo for. I kept thinking of things more suited for loss. I wanted to show something that worked more for my grief over all the things I’ve lost…. I came across this entry in my journal, and a photo of a flower I took that I think work fairly well.

Here are the words on the journal page, I’m sure you can’t read them….
The tears have been shed.
The lines have been drawn.
Do we dare to cross.
Do we dare to dream again.
The tears have flowed line rivers down our face.
The mourning continues.
How do we hope again.
How do we believe?

journal entry w. holcombe — journal entry
w. holcombe

I hope you enjoyed my photo journey so far….you may have learned a little about me along the way.

There are more to come!

Remember, if you would like to join me in this photography journey, come join the Facebook group, there’s a great group of people putting out some great work.

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.

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