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.

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?

Crisis over the Holidays

On December 31, 2014 By WendyIn Bipolar, Chronic Illness12 Comments

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

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

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

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

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

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

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

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

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

Deep Breath here huh?

The past is the past.

I can’t change those things.

The only thing I have any control over is today.

Breathe. Just Breathe.

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

This is how I see things most of the time.

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

I have some good news!!

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

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

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

Here’s to a New Year!

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

Tomorrow is my mother’s birthday.

I will be celebrating her life.

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

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

On December 22, 2014December 22, 2014 By WendyIn Chronic Illness, Mindfulness6 Comments

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

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

That’s right, she gives it away.

It is so cute…I just loved it.

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

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

7 Secrets Your Mind Doesn’t Want You To Know

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

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

I hope you like it!!

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

Happy Holidays!

I did it Alone. Spinning another day…

On December 2, 2014 By WendyIn Meniere's Disease4 Comments

At a little after 6am Stuart was leaving for work and I woke up and decided to eat a little something and take my first steroid of the day.

I woke at 8am with my stomach hurting…ugh, steroids. Then I thought, “Oh good, it is better today, knock on wood”…and I really did! I took an antacid for my stomach and went back to sleep.

I woke up at 10am with horrible heartburn and spinning. sometimes you just want to cuss!

I thought, ok….slow. I can handle slow. I hope. I took meds and slowly, very slowly started to get up. Ah…let’s just lie here for a minute.

Try again….slow. VERY SLOW…. I feel like I’m walking on a merry-go-round, and it’s on a rocking boat….ugh…my stomach takes a lurch…it’s ok, just stop here for a second. Grab my walker….oh nice walker, I love you so much. slowly I get up…I am sure no one has ever seen anyone move so slowly. Once I am up, well kind of up, I am hunched over the walker with my head leaning to one side, I am doing pretty good. I start to head to the bathroom. WAIT…phone! I grab my phone, just in case. If I fall, I need to make sure I can get help. and off to the bathroom. I DID IT! I got to the bathroom ALONE! During vertigo! it was a very slow spin but I did it!!

I did it 4 times today!!! I have been slowly spinning all day!!! If I keep my head exactly still things are pretty still, but if I move, WHOOSH!

This morning I was very proud of myself. Not only did I get to the bathroom alone, I got in the kitchen, grabbed a banana, a couple of pancakes that were in the fridge and got back to the bedroom…got my CI’s….and things I’d need for the day (meds and such) and go myself to the couch. Once I went from the standing position I was in to sitting the vertigo went WILD! What on earth? who knows this is the most bizarre thing in the world, no rhyme or reason to me!

So I collapsed and tried to calm down…and hung on! Whew!

It slowed, and I was ok, but not great by any stretch of the imagination.

It’s about 11am by now. Stuart had an appointment this morning and texted to check on me. I told him I was spinning but I handled it, however, if he could stop by on his way back to work and help me get settled it would be great. So he did….and I sent him on his way! Even though I was not doing well when he left. It is now almost 4pm and I have done a good job of handling things today.

I’m proud of me.

I still want to share with you guys just how I got through some of the roughest parts this past month, and everything that went on in my head, and heart. Things I didn’t want to admit to. I was ashamed to admit I wasn’t handling things as well as I thought I would. But I got through it, and learned a lot along the way. Of course, I’m still going through it….so…we’ll get there.

One thing that really helped me get through all of this…..

So I feel bad about it…feel bad. That’s OK. Acknowledge it. Don’t feel so guilty about it. I don’t have to feel positive all the time. My positive go to attitude is still there, but it is perfectly fine to feel bad about this, to feel sad, angry, and well….just bad. I’m not going to wallow in it, I’m not going to get stuck in it, so I don’t need to beat myself up over it either. Accept it, and have some self compassion.

Things I should note today…. woke feeling better around 8am. Woke with vertigo at 10am. Had rotational vertigo all day, various degrees of spinning speed. Right side of face/head felt funny. (by this I mean, it feels thick). Had a migraine. Took a Maxalt, pain got better, but side of head sensation did not go away. *could some of the vertigo be migraine related? Ears feel full, but not as full as they have over the past few weeks. When I drink I can really feel the coolness in my right ear, it actually feels like water gets in my ear. there is not water in there if I feel in there, but it feels very strange. am I just noticing this because I’m hyper aware now?

What is wrong with me??

On November 15, 2014 By WendyIn Bipolar, Chronic Illness, Meniere's Disease9 Comments

What is wrong with me? This is the question I kept asking over the past couple of weeks. Heck I’ve been asking this question a lot over the past couple of months, I just keep seem to be falling apart. But I don’t think that way….or I try not to. I accept things as they come. I just roll with the punches. Yeah. Well that isn’t how it has been going. I’ve been trying. But I’m not succeeding right now.

It has just been too much. This post is about the latest….

I mentioned a little in the beginning of my last post: VERTIGO…MAJOR!

It started the beginning of this month. I would just suddenly have this whoosh feeling and I’d start to spin. It just felt different. I can’t explain it. Maybe it was different because I had been feeling so off for so long. I had been having the severe disequilibrium for so long (feeling like I’m on a boat all the time) and not being able to focus on one spot without it moving. Maybe? Really, who knows. But these attacks…they are different. The start, it just feels like I moved my head too fast, but I didn’t move…and suddenly I’m in full spin.

One night I had a drop attack, but it felt different from any I’ve had before, and I haven’t had one in a long time. We were watching Jeopardy, and suddenly I felt like an entity had just come up and partially entered my body and pushed me over on the couch and I gasped…one of those screams where you suck in all your breath…I just fell over on the couch and was in full-blown vertigo. If I had been standing, I would have hit the floor hard! It scared me so much. Not just the falling, but that feeling before hand, I literally felt like there was something trying to enter my body and pushed me over. It scares me just thinking about it.

When it started I had just had a day completely vertigo free. I could focus on a spot without it moving, the boat stopped. Relief.

What happened for that day? What happened after that day? These are questions my mind likes to ask but no one can answer, I try hard to stop the loop of questions, but it’s hard. I’m an inquisitive person. I’ve always been that way, I want to know how things work, I loved science and proving theories. Telling me that no one knows something about a scientific problem is hard for me. I keep thinking I’ve accepted that. And I have. I have. But I don’t want to. I want it to change. I want to know what is happening to me. What changed? And more than that, I want for people to stop asking me that question. It is hard enough for me to not have the answer for myself, but when someone else ask it, it cuts me to the bone. I want to just scream….I DON’T KNOW! Please NEVER say to a chronically ill person, “Why can’t they do anything?” of “I think you need to find a new doctor.” You have no idea how many doctors I have been to and still continue to consider. However, this is my life. It is my decision how I get treated. You do not know what it is like to live with this, and you have no idea what the treatments are….do not tell me what I should do. (unless of course you have this disease then you can talk to me and if you over step your bounds I will feel I can tell you to so. That’s different, we are going through the same crap…excuse my colorful language.) However, normal people do not understand. Heck, some people who have this don’t understand, it’s different for different people.

So….off that soap box and pity party….

I went to the doctor on Wednesday. Yes the doctor here in Charlotte. He really doesn’t listen. I will not go back to see him. I am glad I will be able to see the audiologist here when I can’t get to Duke, but I will have to find a different doctor. (and I don’t feel right going to the audiologist since they don’t get paid, I’ll only go there if I absolutely have to.) They do have a lot of doctor’s in that practice, however he is supposed to be the “head guy” who knows about Meniere’s. I will be doing some research, but if he is the head guy…I am up a creek. Let me tell you about my latest visit.

I did get an appointment rather quickly, that was nice. We got to the office and I had to be taken in by wheelchair. They thought I was in a wheelchair because I had back surgery?? I never said I was having back surgery. I did tell them I had a herniated disc and was having physical therapy, therefore I wouldn’t be able to do vestibular therapy until I got that straight. (Where did this information come from?) He asked me about these attacks, how long they have been happening and what they were like. I told him …bad attacks lasting 30 mins to over 3 hours, 3 to 6+ times a day, coming on with no warning. He asked me to describe the attacks. I looked at him and said. “You know what a Meniere’s attack is like.” Yes, I was a bit snarky. I had been through telling him what my attacks were like the last time I was there. I have never had to tell my last doctor what my attacks are like every time I go in there. He said “Yes, but I want to know what your attacks are like.” I started to tell him, I told you last time, but I didn’t. I said, “severe rotational vertigo, severe tinnitus, want to die!” “Yes, that’s normal” DUH! Stuart them tells him how much my eyes have been vibrating with these attacks. I got him to really look this time, and he really noticed, he as surprised he hadn’t seen it so much before. My eyes really dilate, and I have nystagmus really bad during an attack. I need light or I get really sick, but lights also hurt because my eyes are so dilated. My eyes hurt so much after just a few minutes, after hours…well dang! So the lights are normally dim and my face is in a bucket throwing up, of course my darling husband doesn’t normally see my eyes vibrating. Poor thing felt guilty he hadn’t really noticed as much before. I was having him look because something with Meniere’s one eye will vibrate more than the other telling you which ear is causing the attack…not all the time, and not this time…darn.

Back to the visit. The doctor then looked in my ears and does this thing where he makes me follow his finger with my eyes….he moves his finger really fast. I tell him…that makes me sick. He keeps telling me to look at it. I look but I will not look fast. I am not going to throw myself into a spin in his office just to perform his little test. (I know it is neurological test, I’ve had it many times before, you do not have to do it so fast) I had already taken 3 or 4 Valium that day because of the attacks I’d already had. I can tell he gets frustrated with me when I don’t do the test as he wants. oh well. He asked what I take for my attacks, I told him, Valium and Phenergan. He said, well that’s the best. He asked if I had this happen before. Yes, in the spring of this year, and explained it had been after I had been on a high dose of steroids for my migraines that tapered off too fast. My ear doc had to put me on steroids that tapered off slower. He said, I told me I only have attacks 2-3 times a year. I said, I only have very severe attacks 2-3 times a year, I have small, and mini attacks almost every day. He said nothing. He paid NO attention to that. He acts like since I don’t have severe attacks like I have had the past couple of weeks all the time then this is not debilitating. He really heard nothing I said about how this is affecting my life. He heard nothing about how I can’t focus on things without them moving. He DOES NOT LISTEN TO ME! Why? Later when I got home I was so upset, I talked to Stuart and was in tears, “Did I down play my Meniere’s to him the first time I saw him? He doesn’t understand what this is doing to me.” Stuart then told me…that no, he just doesn’t listen, he only hears what he wants to….I digress again…back to the visit….

So he wrote me a prescription for steroids. Good, that is what I expected. He told me the dose and I thought…That’s High. He then said some people get very agitated and have mood swings on these….I told him I do, and it can be pretty severe on a high dose. He ignored me…”If you have a problem call me” I just told you I have a problem! Listen to me! I explained again about how the high dose prescription from my migraine doctor that tapered off too fast made me spin. He said, “This won’t make you spin, but if you have a problem, call me.” Hmmm, are you listening to me?

I got the prescription and started it. The next day I couldn’t stop crying. I looked that the dosage….and the tapering. 60mg a day for 14 days! then 40mg for 2 day, 30mg for 2 day, 20 for 2 days, ….you get the idea. 14 days then 2 days each…that’s a pretty fast ramp down! and 60mg of prednisone for 2 weeks!! I will be going out of my mind! It is very hard for me to deal with these emotional swings with my bipolar swings anyway. It makes me feel like I am having bipolar episode, and it drives me crazy. I can’t trust my own emotions. I don’t know if all of my mood swings are from the steroids or if I need to be evaluated for bipolar stuff. So, I thought….I can’t do this. I decided to look up my chart on the Duke Patient Portal and see what my prescription was from my doctor there. It was for prednisone, 10mg tablets, so that was all good, but the dosage was much different. I’m following his dosage. He starts out at 40mg for 5 days, then goes to 30 for 5 days….ect. a much slower taper down, and I know I did fine with it. I will also be taking half as many pills.

Is this the right thing to do? Should I be treating myself? In this case….I don’t really think I’m treating myself. I don’t like to go against a doctor’s prescription, especially about steroids they can mess you up! But I know my tolerance to them and I know they do mess me up. I once swore I would never take them again….but sometimes you have to do something that you don’t want to do to survive. I feel like since I couldn’t go to Duke to see my doctor, I’m doing the next best thing. We did call him and he said he felt steroids would help again, but didn’t feel he could prescribe them without seeing me. (My point…as I say in my disclaimer, I am not giving medical advise. I do not advise anyone to ignore what their doctor tells them. This is just my story.)

Good news. The steroids are helping. I’m on day 3 now. The first day I had a mini attack and a few hours feeling like I was VERY drunk, I was more sick to my stomach than I was during most of my attacks, and that is saying a lot! Unfortunately, I had run out of what I had been using to really control my nausea, so I was really sick that night. Yesterday, I didn’t have an attack. I did have that drunk feeling again last night right when I was getting tired, same as the night before, thankfully it didn’t get as bad or last as long. So it looks like things are getting better day by day. Tonight, I am going to force myself to go to bed and to sleep as soon as I feel tired…maybe that will stop that drunk feeling.

that is the story of my last couple of weeks.

It has been hard.

The last few months have been hard. Physically and Mentally. It has also been hard because the doctors I trust are 300 miles away. I’d also like to see my therapist, this has been a lot to process, and I’d like to have her to help me through this with the mood swings. I moved here feeling so much better, with so much hope, so much promise. I thought I was ready to handle anything life through at me. I was wrong. I’m still trying hard to live in the now. I’m trying to accept things as they are, and accept my feelings … nonjudgmentally. that is a BIG thing. I may be having a really rough time, and I may not be able to accept life as it is without wishing it to be different, but that’s alright. I’m just not there yet. Right now I’m hurting, and I need to be here for a little while, and stop judging that. I’m still hopeful and good and happy and loving….it is just that the hurt is in front of it right now. And I’m not going to judge that. I’m just going to wait until it goes away, and since I accept that is here, and a part of me, the faster it is lifting and the other parts of me are shining through.

Deep Breath.

Sick and Confuddled

On October 2, 2014 By WendyIn Chronic Illness16 Comments

mushroom with quote — photo by S. Holcombe.

I recently wrote a post that could easily have taken up 3 posts worth of writing. You know if I wrote that much in one sitting I have a lot on my mind. You also know if I’m making up words to say how I feel, I’m in a one heck of a state!

Some of the things I have written you will still see, I’m breaking it up into a couple of post, some of it you won’t….I have decided I just can’t talk about it here. Maybe some day, but not now. I want to, I think it will help some people, but it’s just something that I can’t talk about yet, at least not here. And that’s hard on me, for a number of reasons.

So…on to what I will talk about… (and it turns out this post is MUCH longer than anticipated….yep it’s one of those days. as you get to the end you will understand, but forgive any errors please, I couldn’t go through and edit this, I am in too much pain. But I wanted to get it posted. at least part of it needs a voice…..)

Saturday my father and sister came for a little visit. It was nice. Even though we only live one state away we don’t get to see each other much. They don’t get to come often, and I can’t travel very often. Unfortunately, since our trip to Tucson, 2 years ago, I haven’t been able to travel at all. I thought it was going to be better the last few months, but then I hurt my hip. Now I can’t ride in the car across town without being in severe pain. So who knows when I can go to South Carolina. Thankfully, my sister brought my dad to see me. We had a nice lunch and visit, then they were on their way. Before they came I decided to get a shot of Toradol, an anti-inflamatory to help me not be in intense pain while they were here. I wish I could have them more often, but you can’t take them on a regular basis. I was very pleased that I could visit with them without worrying too much about the pain. I was also happy I could hear them fairly well. I couldn’t hear my father at first, but after a little while I realized if I sat closer to him I could hear him better. What a relief. I felt bad that I could understand everyone else, but was having such difficulty understanding him. All in all, a good visit.

After they left I decided my hip was still feeling well enough we could go and meet the dear lady from the agency who had Kiki and make her adoption final. So off the Pet Supermarket we went. Luckily, they are very nice there and let me have a chair to sit in while we shopped a bit and adopted our newest family member. Since the vet thinks Kiki is between 1 1/2 and 2 1/2 we decided that her adoption date is her 2nd birthday! So September 27th is her birthday! She was lavished with gifts. She got a new sweater, because she has been cold on some of these early fall mornings when she goes out. It is red, and looks quite fetching on her sleek black and white body. She also got a new toy that she loves! She has abandoned all of her other toys for this toy, it is so funny! She also got a new tag, a little purple heart with her name and phone number on it….we need to get her microchip reprogrammed. She is officially ours now! I was so very happy when we were in the store and one of the people who work there told me that he had seen Kiki so often when she was there waiting to be adopted and she looks like a different dog. She is so happy and well mannered. He said it is amazing how much she has changed in just the short time we have had her. That couldn’t have made me happier. I knew then, that yes, Kiki really was meant to be our little girl.

Saturday night I was getting ready for bed. I was sitting on the side of the bed taking my night meds and suddenly I felt the Meniere’s signals. Okay, this has not been unusual lately. I’ve been very acute for the past month or more. Having mini attacks many times a day, so I wasn’t worried. I took a deep breath and calmly tried to focus. Then FLUSH..heat through my body. Ugh. OK. Calm. Focus. You got this. Whoosh. better lie down. Focus. feel the hand on the table it is steady. you are not moving. HEAT. HOT. I’M ON FIRE. Stuart walks in. “Attack?” “yep. ice.” Focus. breathe deep. calm. calm. Spinning faster. wow. deep breath. focus calm. you got this. it’s ok. spin. stop. spin. stop. breath…..Ice..Good! Still hot. chest hurts. can’t breath deep. calm. spinning fast still. calm. calm. it’s ok. it’s part of you. you can do it. “Stuart…shot please” focus calm. calm. so tired. (took meds earlier. Stuart got shot ready,(I’m lucky I have Phenergan shots available to me, it is an anti-nausea/vomiting drug) he was about to give it to me and dropped it. Couldn’t find it. suddenly spinning stopped. yes. OK. rest.

BAM. started going the other way! What the? OK…calm down. but this is weird. you can do it. focus. feel your hand. – what the heck is happening? this is not right. – it’s all OK. focus. calm calm. focus. it’s just different. – no, this is very different. now it’s jumping all around. what is going on? – calm down. calm down. calm calm. focus. it’s kind of freaking me out he can’t find that shot – focus on your focal point. it will be alright. – I need the damn shot! I’m getting scared. – shhhh. calm down. focus. focus. breathe. calm..calm. this is not real. the room is not moving. You are not moving. calm breathe. – Ah…shot. It will be better soon. – Calm…calm…shhh. AH! oh my gosh….”Stuart”. “I’m right here babe. I’m not leaving you.” “I can’t stay awake. I’m all dopey. If I fall asleep it gets worse! I’m so sick. I’m scared. It hurts. My stomach hurts.” “I’m right here, you are safe. I’ll try and keep you awake if you want”

This went on for a long while. I kept dozing off no matter what. It was horrible. I would wake up spinning even more! Then I got VERY sick. I was going to throw up. But nothing came up. I just gagged, and coughed, and mucus from my lungs came up. I couldn’t take a breath in! I had this huge gag that felt like vomit was coming up but it was like a HUGE burp came up then I couldn’t breathe. My lungs hurt. I was having an asthma attack and trying to throw up at the same time! I was so afraid I was going to have to go to the ER because I could not breathe. Stuart was holding me putting my inhaler in my mouth for me. I got enough in to breathe again. (afterward he told he kept watching to make sure I was getting in some air and not having any signs of needing oxygen….but he is also thinking we may need to see about getting oxygen for me at home.)

Finally, it calmed down enough that when I dozed I stayed asleep. And I slept! The pain from my hip did not wake me up at all that night. I was so exhausted.

The next day, was hangover hell.

I felt so bad. I was trying so hard not to feel like I handled thing badly. I really freaked out. I panicked bad. I couldn’t stay mindful. I couldn’t accept what was happening to me. I hated my body, I hated my life, I was afraid I was dying and hoping I’d just hurry up and die at the same time.

This is not what I have been working so hard on. This is not mindfulness. But it is. Mindfulness is a practice. You can’t beat yourself up if you don’t live up to your expectations all the time.

Mindfulness is not just about making it better. It is about feeling how you are, how things are now, and not being judgmental about it. It is about being gentle with yourself. On Saturday night, I could not accept my condition. I could not handle my situation without panicking. That was the way it was. I could feel every nerve in my body screaming that it wanted this to end. I couldn’t accept that this was just the was it was…I fought it. But I was there with it. I had a hard time looking back at it non-judgmentally. But now I can. I can look back and say, I had a damn hard night. I handled it the best I could. Things happened that have never happened before, and it really scared me. Who knows, I may have handled it better than I would have in the past, because of my mindfulness practice? I’m okay with how I handled it. At first I was sad about it. I felt like I failed myself. I didn’t. Mindfulness is hard. Living mindfully is not easy. But it does making living your life easier. Or at least it has mine.

So I’m off to being more accepting of how my life is, even when it’s that bad. It’s my life. It’s much easier on me when I accept that. If I try to fight it, it makes it worse. It really is better when I accept that I have my illnesses, and I have the symptoms, and all the things that they cause. I have found that I can deal with those symptoms better when I stop fighting them so hard. I feel better. I cope better. Heck, the symptoms have been easier.

I’m just saying how I feel about all of this, I’m feel I’m just testifying..haha. I’ll write a more coherent post about this sometime. With references. Or maybe I’ll find a guest writer. Who knows. For now, we’ll just see how it goes with me….hope that’s alright with all of you.

On Sunday, I decided I couldn’t stand the pain and the constant Meniere’s attacks any longer. They use steroids to break both cycles. However, too high of a dose of steroids can really mess you up with Meniere’s and make you have worse attacks. So I started on the dose that the urgent care doctor gave me and put a call in to my otologist at Duke on Monday. Unfortunately, it was phone tag for a few days, and then he wasn’t comfortable messing with this prescription. I do not think he understood the situation!! I am so beside myself right now! I mean right now, I just found out about this. I am looking at these pills trying my best to figure out the best way to ramp down off of them without it being too drastic. Going from 4 on one day to 2 on the next is not a good idea. So I take out the prescription bottle and count how many I have left. 10. Wait, I should have more than that to meet the original prescription. I count again. 10. STRESS! I filled this prescription weeks ago. Will the pharmacy really believe they shorted me?

Thankfully, yes they did. I got 6 more pills. I can do this. Breathe. Take the day as it comes, and accept it. That’s all I can do. So….I sit down and think. I will figure out how to ramp down the steroids that is between the prescription the urgent care doctor gave me and the prescription my ear doctor gave me before. I’m sure I’ll be fine. It’s not quite such a severe drop between going down. Should I be messing with my prescription? Heck I don’t know! But I feel better, with this regimen. I’m too afraid to ramp down so fast.

For those of you who have been reading for a while….remember the Walmart incident? That happened because a doctor put me on a high dose of steroids that ramped down too fast.
Now you once again have a VERY LONG POST.

and I’m too tired to read over it to fix any errors. I’m being a very bad blogger. I hope you will forgive me. I just fell again today….I’m not going to write about that now! I’ll tell all about my back/hip/leg pain after my doctor’s visit on the 6th! I’m sorry, but I’m not up to being an editor today. 🙂 My back/hip/leg thing…just isn’t going to get better if I keep falling is it? Of course, that’s why I’m falling!! I can handle it…..one moment at a time. I can handle anything for a moment, after all, isn’t that really all we know we have, this moment?

***rest in peace to my cousin Curtis Winslow. My childhood memories are full of you. 1958 – October 1, 2014

things change….

On September 22, 2014 By WendyIn Chronic Illness, Mindfulness13 Comments

Everything Changes - photography by w. holcombe — Everything Changes –
photography by w. holcombe

Trying to hold on to the good days, thinking life will stay that way forever is fruitless. It will change. And it has.

My hip flare up, that was just this little thing, that was supposed to calm down after the cortisone injection….has become a complicated mess.

I had my hip injection on September 11th. We got Kiki that evening. It was an exciting day. I expected to be sore that night. I expected to possibly be sore the next day, but would probably feel better….and continue to get better. That didn’t happen.

I’m not sure if the shot did anything. I don’t think so. However. on the night of September the 12th, I got up and went to the bathroom. I started to sit on the toilet and lost my footing and fell, hard, onto the seat. My elbow hit the back of the toilet where I keep a box with things in it and I got a nice little scrape on it. The big hurt was my hip. OW! The pain shot through me, from the top of my buttock, along my side down through my knee….I was in PAIN! I have been in constant pain in this areas since that night. The pain ebbs and flows, but never gets better than a 6, and if often hovering around an 8. I had Stuart give me a Toradol injection. This really helped. Toradol is a nonsteroidal anti-inflammatory drug. (I can’t take NSAIDs by mouth because they tear up my stomach, but I can have these injections occasionally.) Since this worked to take most of the pain away I was sure I hadn’t broken anything. I was also hoping the cortisone shot would kick in and help. So I waited….

The cortisone didn’t help. I went back to the doctor on the 18th. She was disheartened. She suspects that my pain may be coming from my spine, and maybe also from my hip. She set up a CT scan with contrast dye, and she wants me to see a spine specialist, and a more specialized hip doctor. (she is actually a PA in the office, she wants me to see a specific doctor in the practice). I will have the CT scan on Friday. (I was originally supposed to have the CT scan today, but I didn’t sleep at all last night and I can’t control the Meniere’s vertigo today, and since I could get in closer to my doctor’s appointment I decided to change the appointment.) I see the hip specialist on October 1st, and I’m not sure when I see the spine doctor yet, I haven’t heard from their office yet.

How am I handling all of this? Some days very well. Some days not well at all.

I have had a hard time not getting really stressed out about this. I’ve been creating “what if” stories in my head. My mother started having back problems in her 50’s and it really changed her life. She died of lung cancer when she was 64, but I’ve never been convinced it really didn’t start in her back. There are many reasons I believe this, I won’t get into them here. What if I have to live with this pain forever?…….See the stories I have been spinning in my mind….this is not a good thing. This is not a mindful thing to do. It does NOT make things better. It makes it worse. The stress builds, and everything spirals out of control. When I think like this I can feel the depression creeping up over me. It is oppressive.

Then I try to be more mindful. Being mindful is hard. It isn’t something you can just click on with a switch and suddenly you think mindfully all the time…I wish I could, I think I would handle things better. I’m trying. First, I am trying hard to stay present. I cannot change what we are going to find out, but I sure don’t have to make up all these horrible scenarios. I could have something easily fixable. If I have something that is more difficult to deal with, I’ll deal with it. Either way, I don’t have any idea, so stop speculating. Keep my mind in the present, right here, right now. That is the least stressful thing I can do.

I also got so stressed because we got this precious little dog, Kiki, to take care of and suddenly I can’t take care of her. I can’t even feed her. I can’t take her out. I can’t care for her at all. Stuart would not have signed up for this had he known he would have been the sole caregiver for me, Max, and now Kiki. We would not have adopted Kiki at this time. Does he regret it? No. But would he have done it? No. So I have been having that emotion that simply doesn’t help…..guilt. I have put more work on him, and I feel guilty because I can’t take Kiki on long walks and to the dog park and do things I feel she needs. I can’t focus time on training her. I feel guilt. Ugh! useless!

Not sure how that is handled in mindfulness, but I know for me, I need to channel that into something constructive I can do. Haven’t figured all of that out exactly, but I will. Yes, this is not how I planned for things to go, so I need to change my plans. I have been playing with Kiki more indoors as much as possible. She will bring me a toy and I will throw it. She brings it back and drops it in my hand. (how cute it that?) I have taught her to sit before I’ll throw it again. (really, she was already doing that most of the time.) I will hide it and have her find it. (I think this is a newer thing for her!) So we are working on some training. It’s just different from I planned.

Then I go back again to how I feel about my body, and what is happening. My Meniere’s is acting up big time! I always tell myself to stop trying to figure out why, it used to drive me crazy, and I would end up blaming myself for my attacks, but this is pretty obvious. The pain will not allow me to sleep or rest enough. I can’t relax. Also, it is Rag Weed season. I think I’m handling the rag weed pretty good, but I can’t keep up with the exhaustion. My hearing is going up and down; yesterday if I was blind folded I would have sworn a jet engine was in my living room. When the noise started I kept asking Stuart, “what is that noise?” He looked at me funny. I said, “You don’t hear it do you?” I realized it was just me…dang. Then it got louder and louder and louder….and it lasted for over 2 hours at the loudest point. I’ve never had that happen before. I’ve had very loud tinnitus, but I’ve never had that it that loud for that long. It continued to be loud for the whole night but it did dial down a bit.

I hate to say it but, I’m just one big vertigo attack. I try to control them but that is exhausting too. Most of the time I’m spinning at least a little bit. I have been able to control it enough that I haven’t had full-blown… spinning so out of control that I can’t see what is in front of me… vertigo, but this constant boat feeling and everything waving is driving me crazy! I keep focusing on my breath…grateful I am still breathing. Then I laugh…they say breathe, take a deep breath..ect. It’s not like we are going to stop breathing. It is something we do. Do you ever really focus on your breath? Really think about it? If you have ever gotten choked and couldn’t breathe I’m sure you did then, but normally we just take it for granted, like we do our heartbeat, and how our brain works, or the fact that we blink…ect. So,right now suddenly I’m thinking about my breath, not just the in and out, but the actual breath. How it works. I have pulmonary problems so I don’t take my breathing for granted all the time, and I know a lot about how my lungs work….so I think about it, and really I’m thinking about how the oxygen goes through my body, how it nourishes my whole body, how my breath goes through all of me, down through my toes even. and suddenly I just realized….just now as I am writing this that I have calmed down and feel more in tuned to this body and it is just fine. It is working pretty darn good. It’s my body. I like it. I love me. I’m at peace with it. I accept it the way it is.

Now that is mindfulness. That is what paying attention to your breath is supposed to be…..wow. I feel better, right now. I know this isn’t easy. I’ll be working on being mindful forever.

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