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.

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?

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

On February 10, 2015 By WendyIn Chronic Illness16 Comments

I know, I haven’t posted in a while. I feel like all I do is the same old thing, talk about me, and how I’m falling apart….or how I’m dealing with my life and not falling apart. Hopefully the later more than the former.

Well, here I am again, writing about things going on in my life….I was writing a friend a letter and thought, I really should put this in a post. This is part of the reason I started a blog. It isn’t just for other people, it is for me. To get things out, and to keep up with things. Sorry folks, I hope you don’t mind sometimes just coming along for the ride.

Of course one of the main reasons I started this blog is to let people know they aren’t alone on this Chronic Illness journey. If you are anything like me, if you have one Chronic Illness, you have more….and things are always coming up…..so this is what’s going on right now……I’m a little overwhelmed…again. I’m trying hard to take it one moment at a time, then some times I’ll sit down and think about everything that is going on and just feel drained. Whew! Am I really stressed and just don’t know it?

I seem to always have something new come up and have to deal with it, then I have to put something else on hold. You will understand as I continue. I’m going to try to make this as short as possible.

I’ve had some bladder/urinary tract troubles. I’ve been to a few doctors for this, they run a urine test and it comes back clear, my blood work comes back clear. But I’m in severe pain. They will call it, bladder spasms, irritable bladder, non-infection cystitis….but they all say, they think I have Interstitial cystitis. I need to go to a urologist to be properly diagnosed and to get better medications to help with it, but there is no cure, and some people don’t react to the treatments. I’m lucky I don’t have severe flare-ups very often. However, I do have little flare-ups often. This has been a VERY SEVERE flare. I went to the doctor on Monday, February 2nd. Of course, everything was clear, but I felt I needed to go to make sure I didn’t have an infection. She did give me an anti-spasmotic and they helped get me through the rest of the flare.

This sweet doctor was scratching her head with me, she said, “You have a lot going on for such a young lady.” She kept saying, she couldn’t help but wonder if there wasn’t one thing that caused many of my issues. Some umbrella condition. You know I’ve never had a doctor say that to me before. I’ve had Stuart say it, and friends say it, people on my blog say it, but doctors, not so much. I couple of doctors have thought my migraines and Meniere’s may have a commonality but then they kind of ruled that out…maybe….kind of. I think I might just talk to her again. (she works with my new PCP)

On the way home from this doctor’s appointment I had a vertigo attack start. Got home and it was BAD. I’ll leave it at that. You all know how what a BAD vertigo attack is like. I didn’t keep up with how long it lasted. I know my appointment was at 12:30pm and she was on time, and I was finally able to fall asleep WAY after dark. I woke up sick again and it was about 11pm. I was so nauseous for 2 days. I’m not normally like that. Usually after an attack the nausea leaves me after a few hours. The anti-nausea meds work pretty well. This time, I was really sick for days. Ick.

On that Monday I was supposed to have my intake evaluation to start my physical therapy for my hip. This had to be rescheduled. They didn’t have anyone who could do this for TWO weeks. 1st thing that was put off because of something else going on with me.

The next day I had an appointment with a new neurologist at the Headache Clinic. I had to reschedule because I was simply too exhausted to even move my head, and too nauseous. I was afraid if I pushed it I would have vertigo again. Now my appointment is in March. *sigh* 2st thing that was put off because of something else going on with me.

I went to see a new Pulmonologist on January 30th. My breathing test came out good. I do not have COPD. That’s good to know. So why am I coughing up phlegm every day? EVERY DAY since October of 2012? Yes my breathing is better, but this coughing up stuff is gross. I get awful looks. People seem to think I have some horrible disease. I’m on 3 medications for Asthma that I take every day, and I have an inhaler, that I use often, and nebulizer. And my new doctor said, “I don’t know if you have Asthma.” What? He said he needs to see my old records. He also said that you can be clinically diagnosed as having asthma but they actually have to do a test to really diagnose you, and they often don’t do this test. A lot of people don’t want to do this test, they’d rather just be treated for the symptoms. Usually the symptoms present themselves so clearly that they are sure enough that they clinically diagnose it. That is what the doctors did with me. However, I was not presenting with the symptoms when he saw me. So he needs to see my records.

There is a possibility that my acid reflux may have something to do with this cough. So I need to have a barium swallow on Friday, February 6th . Oh wait….I was still too wiped out from the vertigo attack and in too much pain from the flare-up to be able to do this, so I had to reschedule to February 20th. 3rd thing that had to be put off because of something else that is going on with me.

I did finally get an appointment set up for the CT scan for my hip. It is set up for this Friday, February 13th. I will know soon if my hip does in fact have avascular necrosis. If it doesn’t I do hope this CT scan shows what the problem is, with all the pain I am in, I will be very disheartened if the doctor tells me he can’t find anything. (not that I’m looking forward to, or wanting, a hip replacement)

Trying hard not to think about what may be, just living in the now, and waiting for what will come. After all, none of my worrying about it will change anything.

Want to hear something really funny. After all of the things I’ve been through. All the crazy tests, all the things I’ve been told to give up….different foods and such (for example, I eat mostly whole foods, no refined sugar or gluten. I only drink water. I can’t eat onions, garlic, apples, pears….all kinds of foods…it’s challenging sometimes. But I have to use these food restriction of I get sick.) I have been told in the past to restrict my intake of chocolate because of migraines. Well, I found I could still have a square of dark chocolate now and then and it didn’t bother me. I just didn’t over do it and I was fine. Really, I could eat more and I didn’t have problems with my head, my tummy or bladder might not like it because of the caffeine, but my head was OK. But if I limited it to my little square I was good, all the way around. And I was a happy girl. I could still have chocolate.

Dark Chocolate image from medicalnewstoday.com — Dark Chocolate
image from medicalnewstoday.com

Then it happened. I had my square and immediately I got the worst migraine. Oh no! and my bladder started to scream! What? No!!!!

I waited a week. I tried it again. It happened again! NOOOOOO! Not chocolate!!!!

I literally cried!

I’ve given up so much.

my beloved apples.

dried fruit.

asparagus

onions and garlic

NOT CHOCOLATE!!!!

The moral of the story is….you can take away everything else from this woman, but chocolate is her breaking point!

Not the post I planned….

On December 1, 2014 By WendyIn Chronic Illness, Meniere's Disease6 Comments

So I had this post all planned out. I had been working on it in my head. I even had a few little illustrations to go with it. Neat huh?

I really wanted to talk about what has been happening to me over the past few months. All the stuff that has been going on…Physically, Mentally, and Spiritually.

I thought I could get it out. I haven’t been able to write much. To read much. To do much of anything because of the vertigo. Finally, I thought I could do it. I started getting it together. but that’s not how things happened…..

I started getting ready for bed night before last. I had had a strange day. I hadn’t had vertigo, but my ears felt off. (if you have Meniere’s you can know what that means….or it could means something different for me….what they were doing, well, they felt very full, and my hearing was weird – best word I have – I thought that would stop when I lost my hearing and now hear through cochlear implants, but no, my hearing still gets wonky, unless of course I turn them off, then I just hear the increased tinnitus….oh yeah, I didn’t mention that, I also had increased tinnitus.) I also had this weird fainting type of spell. I didn’t faint, but I felt like I was going to, like I was hit by a tranquilizer gun. It was strange. I had to fight hard not to just pass out. I could have gone to sleep, I guess, but it was too scary of a feeling, like if I went to sleep I might now wake up. This has happened a few times lately, I have blamed the steroids, they can make your blood sugar drop, so I eat something and feel better. This time was a bit worse, as it came on very suddenly, and I was hard pressed to even move……so….Stuart checked my blood sugar. I’d just eaten a banana, my blood sugar should not have been low. My blood sugar was indeed not low. It was on the higher side of normal…hmmm. Not that strange since I just had that very ripe banana, but strange since I felt like I was fainting from low blood sugar??? what on earth? Well I ate some protein anyway, and maybe it was the placebo effect, maybe the spell was just ending, whatever…I started to feel better. But I still felt off…and I admit, I ate more, I ate too much probably. But I felt better.

A little while later I went to get ready for bed. I was brushing my teeth and looking in the mirror and thought…why am I moving? Then I feel it and think…”oh shit.” Yep, vertigo. No warning, no strange feeling, nothing….I was just moving….what the?

It was slow so I rushed to go to pee real fast but had to have Stuart help me to bed. (I always try to pee really fast before it gets bad because I always have to go when it happens. It is horrible lying there about to bust to pee and can’t move because of vertigo, but it happens every time! And if I vomit, I will pee too, complete loss of control. So rush to pee, if I can…..so strange how things have changed for me with this…I never would have considered trying to run to the bathroom when this started a just a year ago, now, well….things have changed….)

I got my meds in me and it looked like this wold be a short trip. WRONG! It was a long and bad. Over 4 hours….slow, fast, start to sleep – wake spinning fast, terrified – have to go to the bathroom again! can’t get up….bedpan, humiliation, back – pain! – ….FAST SPINNING – help….slow…..fast…..sick…sick….help….tired….guilt….sorry…..sleep….AHHH!…..slow….sleep…AHHH!……….

Now what?

I was supposed to be going down to 1 steroid a day the next day. Yesterday. I did. I felt bad all day yesterday. I hoped it was just that hangover feel from the night before. Then..Last night. vertigo. just a little, all night, I just kept waking with the bed moving. I handled it.

This morning I woke….AHHH! FULL FAST SPIN! Stuart’s at work, and I have to GO TO THE BATHROOM! and I do not mean just for my morning pee. Oh hell. Whoosh! Whoosh! Whoosh! I can’t move. Which world do I try to step in to? They are moving so fast. Whoosh! Whoosh! Whoosh! Oh I am so sick. More meds. sick. I have to GO!

I grab my phone….text….I can’t see the key board, it’s all a blur…WHOOSH! I type, “Spinning” I think…and hit send to Stuart. I don’t want to bother him, I want to be able to do this alone. But how? I know other people do. How do they do it? How do they go to the bathroom? How do they survive without killing themselves (accidentally or on purpose?) Since this has gotten so bad, I have always had Stuart to help me. I’ve only had to deal with an attack a very few times alone. That was so long ago. It was so hard. I don’t know how to not ask for that help from him. How do I do this alone?

Soon I got a text back. I don’t know what it said…..I texted….”help” hit send.

Then I called on voice. I only have to hit one button. I did not have my cochlear implant’s on, so I could not hear anything. I saw the little numbers start counting, I don’t know if he picked up, I just started talking. “I’m not hurt, I have to go to the bathroom. I need help for that. I’m not hurt. please just come help me to the bathroom. I’m not hurt. can’t get to the bathroom, really have to go…..” then said I hoped he heard me and hung up. I really wanted him to know I wasn’t lying there hurt, but I needed a little help….then I waited….

and waited. and held on as hard as I could. I knew I would soon have to try to crawl to the bathroom…..but then what? I wouldn’t be able to get up on the toilet…..what was I going to do? I kept trying to think. the bedpan was in the bathroom. Ugh! The trashcan? maybe. I’m going to kill my back even more. “I have to GO! I’m going to soil myself soon.” (I really think I may have ended up soiling myself before I would have made the decision what to do. My body wasn’t going to wait much longer.) Then Kiki jumped up and ran out of the room…..”Yes, Stuart is here. Whew….”

So I was saved the humiliation of soiling myself, or the possibility of injuring my back more from trying to get to the bathroom by myself…..or injuring myself any number of other ways. *sigh*

The vertigo won’t go away. It slows way down….right now I feel like I’m on a boat with the constant rocking, and if I move, it gets MUCH worse. I will have full blown spins on and off.

I had an appointment scheduled at Duke tomorrow with my ear doc to get his opinion about all of this, now I can’t ride in the car for that long. We rescheduled it for…I think Stuart said a week or so out. I have increased the steroids and am hoping I can get this under control enough by then so I can ride in the car to get there. What can he do? I have no idea. What is causing this? I have no idea. I thought I had an idea, but now, nope. Where do I go from here? if my trip to Duke comes up with nothing….I don’t know. One step at a time.

I can’t control what happens in the future, but that doesn’t mean I can just sit around and not do anything. I have to consider Stuart’s job. His boss has been so very understanding, but this is above and beyond what we ever thought he would have to be doing. First I injure my back and now this? I’m afraid he is being understanding on the outside and not so much on the inside? Stuart is getting his work done. He works the hours, just often not normal hours. Today he is now working at home. He is going to talk to his boss again about this to ease my mind. He likes this job, I do not want to jeopardize it because of me. But I do not know how to take care of me during the attacks by myself. If they are short, fine. But when I can’t walk all day long because of it? How do I go to the bathroom? Get water? food? We can’t afford to get me a helper, and who would know when I’d need one? (I’m spouting off out loud here, I’m not looking for answers…..just where my mind is right now.)

The guilt about this eats me up. It is crazy to feel so guilty about being sick. I didn’t do it. I have no control over it. Yet, this is the one thing I find the hardest to deal with….guilt. I am so very sorry to be such a burden. At times I will feel like I am past this, but then things like this happen and how can I not feel like a burden. How can I not feel guilty? How can I not feel that I am causing so much trouble for my husband? Believe me I could give a list here of a lot of things that need to be done, that he needs for himself…..ect…..that are neglected because of me….because I’m sick. Guilt much?? I’m working on being much more gentle with myself, non judgmental….I’m better than I used to be, but really, I don’t know if I’ll ever get rid of all of the guilt. It’s a work in progress. I can say it is much better than it used to be. I don’t hate myself, and I don’t think of myself as a complete failure. Those used to be huge thoughts that ran through my mind. Those are thoughts that I hear from many people who are chronically ill and have lost so much of their independence. That’s a sad thing isn’t it? Ah…things I’ve been thinking about…..I’m doing really well with much of this stuff. I really do like me. I try my best to be a good person and I think that’s pretty darn important. It’s just that my body often needs help, and I feel guilty about that. Perhaps, if my husband had help it would be easier. …..eh…..going in circles there aren’t I?

No…this isn’t the post I planned to write. It isn’t well thought out. It isn’t illustrated. It doesn’t give a good account of what has happened. It’s just me. Telling you a little bit how it is now. In this world of mine. would I change things in my world today. yeah, can’t say I wouldn’t. Do I still love my life….most of it yeah. This vertigo stuff can hit the highway though…..but I will accept it. I have to.

This is just how things are right now. Just right now. they were different a moment ago…they will be different in a moment.

I’m actually much calmer about things and I’m dealing mentally with things better….yeah I know it doesn’t sound like it….but really I am (probably won’t be when the steroids start kicking in full force again, but hey, at least I’ll know it is the steroids, right? this last round made me a bit crazy….I do not know what if feels like for a “normal” person to be on a high dose of steroids, but it makes me feel like my bipolar medications aren’t working, however, you sit there and think….is it the steroids or do I really feel like this? ugh!)

It has taken me all day to write this.

I hope it makes some sense.

I’m going to try to write more often. I need to keep up with what is happening to me. So these posts coming up may be up and down or start to sound the same or something….but I really need to just write about what I am going through….

hope you don’t mind….

I might just need someone to listen.

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.

Finally I understand….they really aren’t bad people.

On November 6, 2014November 11, 2014 By WendyIn Chronic Illness, Cochlear Implant, Disability, Meniere's Disease6 Comments

I wrote this a few days ago, but did hit enter. I wanted to read over it and make adjustments….but I had a vertigo attack..and another, and another. I’ve been having many vertigo attacks since November 1st. They come on fast and the spinning is very fast. They last anywhere from 30 minutes to 3 hours. Yesterday I had 6 of them. I can’t be on the computer very often the rare occasions when I can. I can’t read much. I don’t know if this is Meniere’s or Migraine Associated Vertigo, or a combination. My guess is a combination. We have calls in to both my doctor at Duke and the doctor here….yes the doctor here….I’m desperate…and read below you will understand why I’m giving him another chance.

So I don’t know when I’ll be back. and I didn’t read this over. thank you all for supporting and hanging in there with me. You are the best!

So the people at Charlotte Eye Ear Nose and Throat are not so very horrible. Stuart talked to the head of the Audiology department today. She said that the doctor I saw has spoken to her twice about making an exception to see me. Shockers! Also there seems to be a pretty good reason for them to not see people from different clinics. They don’t get paid for it. Yep, it’s in their contract that they don’t get paid for MAPping cochlear implants that they didn’t implant. Sad. (for those of you scratching your head right now thinking, what on earth is MAPping? It mainly means when the audiologist adjust the CI’s so you can hear better…but here’s a link to nice explanation with more detail, if you are interested. It is in easy to understand terms to don’t worry. Mapping a Cochlear Implant).

The audiologist then told Stuart that they made an exception in 2 cases, if it was a hardship for someone to go back to the place they had their CI surgery done, or if they couldn’t travel that far because of a physical problem. She said, in my case it is both. Because of the Meniere’s it is a hardship because I can’t drive and I have to depend on getting someone else to drive me. I am also physically unable to ride that far because of the herniated disc, and because of the vertigo. So, they are going to see me at this office!

I really wish they had told me this before. I do understand they they don’t want everyone to know there are exceptions because then people would be trying to bend the rules. However, if they had just told me they didn’t get paid, I would have understood. That would have made me very understanding. I feel horrible that they don’t get paid. I do not feel right taking advantage of them. If I only have to see them once a year or so, we will just pay them for the visit. If I have to go numerous times, I will try to go back to Duke. Right now, I really need to have this done, and I can’t afford to pay for the visit. I am so very thankful that they are willing to help me.

My suggestion to them in the future…explain to the patient that they don’t get paid. I sure wouldn’t have thought they had awful business practices if they had told me that.

On a not so good note. Well, first a good thing…I woke up on Halloween…No vertigo. Yay! By late that night I had a little. It decided to come back faster than before. I fell like its toying with me. Oh my goodness it has not been fun, if I move my head I get sick to my stomach. I have a headache all the time because I have to concentrate so hard to focus. Then night before last….major attack! Dang! I didn’t handle this well. Mindfulness…yeah I’m not doing well. My brain is not staying in this moment. I keep thinking, what if it doesn’t stop. After all this slow stuff has been going on for a while now. I can’t stop my brain from saying building up these stories. It’s harsh. And it is making it worse. Last night I had a little bit more than a mini attack but not a major attack. I handled it better, and got it to slow down. I’m just so sad about it.

I’m working on a lot of self care. Eating well, pampering myself a bit, reading things that make me happy, watching good things on TV, reaching out to people I know give me good advice or just make me feel good, getting good sleep, and enough rest. Making sure I take my medication on schedule. Keeping a routine as much as possible. This is very important. If I don’t do these things I know I could slip into a deep depression. I know this because I’m biploar. But this is important for anyone. Especially those of us with chronic illnesses. We can get sick easily when we are under stress, we have to take care of ourselves, and when life hands us some extra challenges we have to be diligent about taking care of ourselves.

I also have to rest more…that may mean taking a nap, or just resting more. I need to meditate more….now during these times I won’t be able to quiet my mind. I know that. and that is ok. I will just sit quietly, and breathe. As a thought comes up I will acknowledge it and tell it to move along…I will probably be doing that the whole time…and that is ok. It will still do me some good, and I’m sure I will feel better. I need to not give in to my impulse to eat more, especially junk. Yes, when I get upset, I want junk. I can’t do that to myself. Just as I can’t drink or do drugs. I have to stay as healthy as I can to keep my depression at bay.

So I’m off to do some reading that makes me laugh.

Just wanted to share this great news!

Hubby decided we needed to celebrate. Dinner tonight…Steak with roasted green beans and new potatoes. And for desert….a parfait made with bananas, berries, Greek yogurt, walnuts and a touch of maple syrup. Double yum! (Ok, so I have that desert often. It’s really good and good for me! I feel good knowing I’m taking care of me.)

You can’t help me hear better why??

On October 28, 2014 By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease35 Comments

I broke down and sobbed at the ear doctor’s office yesterday. I actually left there sobbing…in the elevator, out the door, in the parking lot…had to stop in the parking lot and catch my breath because of the sobs…then into the car…….

I could not believe what I had just heard!

Not from the doctor, that hurt but I wasn’t surprised. He mainly said, I had to live with it. I didn’t realize I was hoping for more until he said it. but I was crushed. I was about to cry then. But I held it together, I knew I would cry later, but just a little…a little mourning once again. Knowing that I may live with this constant vertigo forever. The fact that my worst feat was coming true….well just a little. It isn’t fast vertigo, that is my worst fear. I will not build up that fear. After all I may not live with this forever. I do not know the future! but the wound was open, and it was raw….I was acknowledging these feelings…it hurt.

Then we went to set up an appointment with the Cochlear Implant audiologist. Thank goodness, I really need my CI’s adjusted. When ever I have a Meniere’s attack my hearing goes wonky. They refused to see me!!!!! What The *%&^??

First the doctor had said that they didn’t see people who went from Charlotte to Duke to have their Cochlear Implant surgery because they do the surgery there. OK? well that makes sense I guess….still that is not right. So you choose to have your surgery somewhere else, then we will not help you after your surgery. They want to people to have their surgery there that badly?

But he said, since I lived there and moved here, maybe it would be OK. So they went to set it up….NOPE.

Then they came back saying it is their policy not to take transfers from anywhere in NC. What? Charlotte is on the far side of NC. NC is a VERY long state. If someone moved here from the far side of NC they couldn’t get their CI’s adjusted here? That is like 10 hours away. What? That is just messed up. What if my surgery had been done poorly and I needed help? Oh I’m sure they would help me then, that would be surgery. This is just seeing the cochlear implant audiologist. I still don’t understand. They get paid for this. It’s not like it is free. The appointment last for 1 1/2 to 2 hours. It’s expensive. Frankly it feels like discrimination. You are one of those people from Duke, we don’t like your kind here. I am just floored.

So, they say I will have to ride 3 hours to Duke to get my CI’s adjusted. Yes, that is just torture for someone with vertigo!! Then to have the CI adjustment is very hard on me. It always makes me sick and I get a migraine. Then I will have to endure the ride home…another 3 hours. (of course if I have vertigo really bad it will take us much longer, we may even have to stay the night somewhere.) Ugh!

I am at a loss.

There is no other CI clinic in this city.

Right now we are making an appointment at Duke. I can’t see me actually going to this place after this anyway. How could I trust my care to them?

I’m complaining to the manufacturer who makes my CI’s because I was told by them I could get my adjustments done there. I’m sure they have no idea that this place is refusing patients who have Advanced Bionics Cochlear Implants. (or any other implant from another clinic)

I am really beside myself and this is starting me to spiral out of control.
I am going down…down…down…

I am working hard not to let it.

I am tired of feeling that everything is out of my control.
I can’t even make calls about this.

I want to call that audiology department and find out why this is a policy and see if they understand my situation. I feel this is malpractice, but according to the Audiology society where I could file a complaint it isn’t. It is their business practice rules and that isn’t considered something I can lodge a complaint against. It is discrimination! I am being discriminated against because of where I had my surgery.

I just can’t believe this.
Normally I would never think of going there after this.

I would want to make them pay, but I wouldn’t let them touch me.

but I don’t want to go so far away every time I need to be seen.

*sigh*

I don’t have a choice.
I can’t do anything, and let’s face it, Stuart is not good at these things….and this stupid office had no way for a deaf person to get in touch with them!!!!

I can’t email them!

I’m not good on a computerized caption phone. There is always such a delay, and there is always words that are translated so wrong. I gave up.

I want to scream. guess I could since our neighbor moved this past weekend. LOL

OK….

I’ve vented enough.

That’s my predicament
on which I will lament.

Wanting to take care of me
but have to depend on he.

How do I reconcile myself to this half-life?
or do I continue to wrestle with this internal strife?

Many of life’s offerings I willingly accept,
but loss of all control, I’m not so adept.

This is today, I can’t predict tomorrow.
let me, wipe away these tears, let go of the sorrow.

I need to admit it, I’m having a hard time.

On October 22, 2014 By WendyIn Chronic Illness12 Comments

Ahhhh!!! I wrote more on this post, I revised it, I saved it, I really did. I wrote more on it last night, and saved it. I opened it this morning and wrote more, I revised….I just tried to put in a photo and finish it up….error. Really? So I thought, I’ll save it and then try again. It asked, “are you sure you want to do this?” I knew it was too late then….all my work today was gone. Oh but wait, a lot I added last night was gone too! All my revisions. What the???

I can’t do it again. So all the revisions, all the changes, you aren’t going to get. Because now I have a migraine. I really want to post this today. The parts that say today in here, are really yesterday….that was fixed in the revision, but Oh well! This is what you get today. I was feeling better today after voicing a lot of this, so today it was changed to be a bit more positive….you wont’ see that. WordPress is not being kind, and I’m going to live in this moment and not deal with it. haha

So….here you go….the post that is kind of what I wanted to write.

I haven’t written much about how I’m really doing. About how some things have been getting to me a bit. I’m trying hard to keep mindful and stay diligent with my mindfulness practice, but I have to admit, I’m not far enough along in my mindfulness studies and practices to counteract my feelings right now.

When we first moved to Charlotte, I was feeling so much better! I was able to do things around the house, to take walks, to well….do things! I could hear. I was thrilled the last time I went to Durham I had a long conversation with my old neighbor and not once did I have to ask her to repeat herself. Not once! That was amazing!! That has drastically changed.

Right now I can’t walk very far at all. I can’t walk at all without pain.

I still haven’t been able to start physical therapy. It’s mostly my fault…bad decision in the beginning, I thought I should wait until I saw the hip doctor to make sure he didn’t want to add things to the PT orders, or something, heck I don’t know, it seemed like a smart thing at the time. That delayed things almost a week, then we called to set up an appointment, it was a week out! So that is 2 weeks I wasted. So my first appointment was supposed to be today. I had a cluster headache last night, when I woke up this morning I had no balance and felt like I had a hangover. There was no way I could go to physical therapy. I could barely stand up. So again a delay….until Friday. *sigh*

My back actually feels better, I don’t have a lot of pain shooting down my leg any more. My hip still hurts a lot. But the hip doctor said nothing is wrong with my hip. He was actually not someone I would want to see again. He was the type of surgeon who looks at a scan and says, “Your CT scan is basically normal, there is nothing there I can fix.” and then proceeded to tell me it was therefore all coming from my back and good bye. Even though I didn’t hurt my back until after my hip pain started! The back doctor said, yes I have a herniated disc, but I also have hip problems too. The back specialist was wonderful! He believes in conservative treatment first, and explained things well, was very knowledgeable. I would recommend him to anyone! This hip doctor, was knife happy. If he didn’t see something he could immediately cut on me to fix, it wasn’t his problem. No matter how many questions I had. I told him that I could have gotten that information on the phone, and I was sure that was the quickest visit he had that day. He said, he loved giving good news. Ugh!!!

I’m trying hard not spin “what if” stories about the future with the hip/back thing. I will live in each day. I WILL! I will work hard at my physical therapy and get my muscles back in shape, and deal with how it turns out when it happens. This I will do. It is just really hard.

Since the Fall weather has begun my ears have started to tell me they are in charge of my life again. I was having multiple vertigo attacks a day. Just little ones, I handled them pretty good. It was exhausting. It was driving me crazy. I was trying so hard. Every afternoon around 4 or 5pm I start having tinnitus that is pretty relentless. It is hard to deal with. It can drive you insane to hear this very loud noise every evening for hours. My hearing sounds like I’m listening through a deep barrel. This reverberating noise. It has gotten much worse since I had the very bad Meniere’s attack about 3 weeks ago. My balance has gotten much worse too. These things have been exceptionally hard to deal with. I can’t stand to be in a crowd, heck I can barely stand for Stuart to talk to me in the evenings. I have been having slow vertigo almost constantly. If I focus on one thing it moves. Nothing is ever still. I always feel like I am slightly moving. This scares the mess out of me.

So where am I now?

I’m scared. I’m lonely. I’m sad. I’m mad. And I’m determined to NOT feel like this for long!!!!

This is a time when I have to be careful not to dip into depression. I have to pay close attention to my bipolar signals. I have to up my coping mechanisms. Be sure to get plenty of rest, keep up with my stress, take my meds on time……pay attention to me. Bipolar can sneak up on you at times like this, even when you’ve been stable for a long time.

Before I was when I was really sick and I was alone because I felt so ill. Being alone was felt better for me. I was almost afraid to be around other people. Now, I don’t feel that bad…I’m not in horrific pain, I’m not throwing up all the time. I just can’t stand to be around people because I can’t hear them. I get confused. Noise drives me crazy. I can’t go for walks. I can’t get out in the neighborhood and meet people. I’m very disappointed right now.

I wanted to do things here. I wanted to get out and really have a life.

I’ve been stuck on this couch for so long.

am I giving up?

What do you think???

I have an appointment with a new otolaryngologist here coming up soon. Will he be able to do anything? Maybe not. But he will be able to give a new perspective on things. This is a big clinic here and they are doing some studies on Meniere’s. I probably won’t qualify for any because I am so advanced, but since they are so interested in the disease means they have some people there that are open to different things. So who knows? I will also be getting my Cochlear Implants adjusted. After I have a major attack I always have to have them adjusted. They think it’s because when someone with Meniere’s has an attack the area in the cochlea swells, well that is where all the wires are for the cochlear implant, that is how I hear. They get pressed on and it changes things. So things have to be adjusted. This doesn’t happen a lot with people who have Meniere’s who get CI’s because usually when they get to that stage they have stopped having vertigo attacks, or they don’t have them very often. This has become a pretty routine thing with me. So I had to find a CI audiologist close to home.

Even if the new doctor doesn’t help….I will deal with things. I’m sure we can get my hearing better. If not, I will deal with it.

That’s what I do. I accept things, and move on. That’s life. and as much as the road as been a bit rocky lately and I have had a hard time dealing with things, I still love my life. really I do! I have a lot to be grateful for…I’m just a little overwhelmed at the moment. Having a little bit of difficulty with “not wanting things to be different”. I want things to be different. Right now I want that very much. If it doesn’t change? I will adapt. I will change my expectations. I will accept. It will just take me a little bit.

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

Picnic with Ants

Tag: dizzy

I Didn’t Expect

Surgery Date, and Vertigo

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

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

Not the post I planned….

What is wrong with me??

Finally I understand….they really aren’t bad people.

You can’t help me hear better why??

I need to admit it, I’m having a hard time.

Sick and Confuddled

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this: