I was fortunate enough to take a couple of days off work recently. It was sorely needed and gave me a chance to really be alone if you don't count all the dogs and cats in the house. I got to spend some time really taking care of myself and making plans that could change my life. Normally when I am home there is always someone around and I always have something to do. I figure there isn't enough time in the day to do everything I want so I do several things at once. It has gotten so bad that I have taken to watching tv while reading. It really is insane, but I can't help but get caught up in the rush rush of American society. That doesn't work with someone who has a chronic illness. Actually, this mindset isn't good for anybody. So with my body failing, my nerves shot and my energy depleted, I decided I needed a couple of days to really get some rest.
My first morning didn't start the way I wanted because I couldn't sleep in. Normally I feed the cats when I get up and my husband feeds the dogs when he gets up later. I was hoping he would take care of everything and I could just stay in bed, but things don't always work out the way I planned. He decided the cats could wait and he just went about his normal morning routine. This leaves me with some hungry cats that needed food immediately and aren't above resorting to physical means to wake me up. My mood started out all wrong, but I figured it would be fine after my husband left because he couldn't do anything else to mess up my day. I'm sure he doesn't mean to do the things he does, but sometimes I get the feeling he was sent to make things harder for me. I decided to make a smoothie since we had some really good fruit. All I did was throw some pineapple, mango, and blueberries in my blender and added some mango nectar, some almonds and wheat germ. It was really good.
I've made several medication changes over the last month that I think actually are helping me now. I'm eating much better and a lot less. One thing I haven't been doing enough of is exercise because of the pain in my heel. In the last couple of weeks that has been improving and I'm actually having some moments where I'm pain free. My head is clearer and my ears aren't as bad as they were last month. My recent hearing loss hasn't improved, but I didn't expect any changes. Through the course of this illness I have had times where things have improved to the point where I have been considered in remission, but I have never had my hearing return to normal. Meniere's is taking my hearing little by little and won't give it back. I am so fortunate for the good times now that I don't get as upset about my limitations. I figure if things get really bad Max will be my service dog.
During my time off I also had a chance to just be still and be quiet. I made some decisions that I hope my family will support. For years my husband and I have had a plan to move when the youngest child graduates. That is now four years away, but we have been counting down for years. We tossed around several states we wanted to move to, but never really settled on one place. Over the years I keep being drawn to one place over and over again. During my quiet time I actually came to the conclusion that there was a reason I was being drawn to that state and that is where I belong. Very rarely have I had this much peace about a decision so I know this is right. It is so exciting to be on this adventure. I can't wait to see what tomorrow brings.
In the next week or so I will start posting regularly. I plan on covering Meniere's facts and treatments, exercise, eating healthier, and other off topic things that come to mind. I will be working on trying to reach others that live with chronic illness and try to make the most of every day. See you soon...
I have been so busy with work and family this week that I can hardly think. Every afternoon this week I have fallen asleep in the chair which is something I never do. As a result, my balance is way off and my mood is horrible. The best remedy I have found for my crabbiness is a cuddle with one of my kitties. Usually it is Thor because he loves to lay in laps and his purring relaxes me. Just one look in his yellow-green eyes and I forget what's bothering me. Just look at that face. Who can't feel better?
This year I was really worried about July 4. I'm not taking as many meds as I have in past years, so I was afraid I would have an attack of the spins. I knew I couldn't do fireworks with the noise and constant looking up which I knew would trigger vertigo. I wanted to enjoy this long weekend like everyone else, but I can't. What would I do?
I am very fortunate to have some of the best friends in the world. One of them just moved into a house in the country last month and invited the family out to celebrate the 4th and have a bonfire. We had such a great time. Even Tim came after work and he never wants to go anywhere. Debbie is so much fun to be around, and there were so many laughs. I even caught Alexis laughing really hard a few times. The bonfire was nice and we got to roast marshmallows and the girls lit sparklers. And we got to see fireworks in the distance. We saw 3 big show and 2 displays that were put on my neighbors. What was so nice about it for me was that they were far enough away that the sound didn't bother me and I made it through the night without spinning.
I was completely knackered today though. So much work needed to be done, so I tried to balance it out with breaks through the day to help. I still feel like I need a few days off, but I think I will be fine. I seem to be adjusting to this latest drop in hearing, but my attitude needs a lot of work. It still isn't fair, but I wasn't promised a life free of challenges.
Last year at this time my husband, daughters and I spent a week at a cabin in the Hocking Hills. It was such a nice escape from our everyday life. I have been itching to get back for another week to relax. Unfortunately I am unable to take a vacation until sometime in the fall due to work commitments, so I will have to settle for maybe a weekend sometime and the many pictures of our many trips to the hills.
We have a new addition to our family. As you can see he is a ginger and adorable and it was love at first sight. His name is Rooney, and no he wasn't named after Mickey even though my husband likes to joke that it is. He doesn't know funny anyway. He's named after Wayne Rooney since I'm a huge Man U fan. He's fitting right in to our crew with very little problems. Just two of the other cats didn't seem happy at first, but they are now tolerating him. He's a typical crazy ginge, but that's what I like about him. In these pictures, he is cuddling up to a sleeping Nia. Now why am I taking on even more work and stress when I really need less? Just look at that face - how can you not?
I've been feeling antsy lately. I'm not exactly sure why, but it could be one of many reasons. Or it could be several little things. I'm sure turning 40 and taking stock of where I am and where I wanted to be play a part. This seems to be a common thing among my friends of this age, but I wonder if I am more aware because of current circumstances. I've spent the last 10 plus years dealing with a chronic illness that is slowly breaking me down. I've also spent many years experimenting with drugs, and not the recreational kind. That has had as much of an effect on me as the illness.
I have been on so many medication regimens over the years that I've lost count. None have done what the doctors wanted and just made me more miserable. Right now I am down to two medications and I'm trying to work on getting off of those. A month ago I weaned off of two meds that may have been helping slightly, but the side effects weren't worth any benefit. A month on, I'm finally free of the horrible withdrawal symptoms I was suffering. Oh yeah and my doctor said there wouldn't be any. I love her to death, but sometimes she can be wrong. Also I have finally stopped eating like there was no tomorrow. I intellectually understand how medicine is supposed to make me feel better, but if they make me gain an enormous amount of weight, isn't that not good? Well I actually feel better now, but face the long road of trying to get this weight off. Unfortunately I've been through this before with meds and I'm determined not to go through this again.
My mind is finally clear for the first time in years. It is really hard to explain what has been going on. I am starting to feel like I am taking more of an active role in dealing with my illness and exploring more natural treatments. I'm sure it won't be easy and maybe I won't get better, but I'm willing to try even if nothing works. You see I feel like Meniere's has taken over my life for a reason. I may actually be open to finding out the reason instead of trying to pretend to be normal so the people around me don't have to face uncomfortable truths. I tiptoe around not wanting to upset people, but honestly this is what I deal with. I have been blessed though with some incredible friends and family who are there to support me and I can't thank them enough. The way I look at it now is I may not get better, but I'm going to do my best to feel better.
My relationship with my father has had many ups and downs throughout my life, but through it all he is still my dad. He's far from perfect and has never claimed to be, but I have learned a lot of life lessons from him that have proved invaluable.
1. You can have disagreements without having arguments
In all my life, my dad is the only person who I have ever been able to have an intelligent debate with. I really hate conflict. I mean real conflict that dissolves into name calling and resembles a verbal boxing match. They always seem to turn personal. Yeah yeah tell me all you want that you are just having an intelligent discussion, but I know the truth. My dad and I have discussed what would be considered "hot button" issues without throwing one verbal barb at each other, and we were on opposite sides. I think part of this is that my dad is one of the smartest people I know and he doesn't worry about being right all the time. He never changed my position once, but I could really understand his positions and why he believes what he does.
2. It Is Actions, Not Words That Matter
This has been a pretty easy lesson to learn because my dad is a man of few words. He has always put family first, even when I thought he didn't. He always worked more than one job to provide for his family. Even though my mom worked, she didn't have to. On holidays, he was always at work, either at the fire department or on the medical helicopter. That's just what he did. His job was saving lives and you can't schedule that 9 to 5. This may be where I got my insane need to help and serve others.
3. Bad Things Happen, Move On
Everyone has had bad things happen in their lives. My father is no exception. The difference is he doesn't let them define who he is. He just moves on and leaves the past in the past. He has taught me that you can be victimized, but you don't have to be a victim. And before you think it is easy for me to say something like that, I have had more than my share of terrible things happen to me. It takes effort to get past the pain, but if you dwell on the past you won't be able to enjoy the present.
4. No Matter What, We're Family
That's basically my dad in a nutshell. No matter what happens in life, we're family and we take care of each other. No matter what has gone on between us, we will stick together when times are tough. When I was at my lowest point and didn't know what to do, my dad stepped up and saved the day. He's always doing that even if you don't ask. And if you do ask, he won't turn you away. He will stand up for you no matter what. I am the same way with my kids and family. You have to go through me to get to my family. And God help you if you try. Actually you'll have to go through my dad to get to me. And you will definitely need God's help.
There are many more lessons I've learned from my dad, but that's all I've got right now. The top picture is probably my favorite of my dad and my son. I love the one below also. This sums him up to me. Once he became a grandfather, it was like he started his second life. He has always done everything for them and even though the girls are in high school and my son is an adult, he still loves to spend time with them. I love the pictures of my dad and my son because they have a special bond. He was the first grandchild and only grandson, so my dad has a different relationship to him than the others. Not better, but different. Boys are something else and my son is no exception. Watching him with my kids makes me look forward to possibly having some of my own in the future.
One important lesson I have tried to teach my son also came from my dad. It is the first part of my favorite quote of his. It is a man takes care of his family. My dad said this to me years ago when I was undergoing some hard times. He sat me down and said, "A man takes care of his family and _______ is not a man." It's not important who he was referring to, it is the first part of the sentence that counts. And that is my dad, not just a man but an amazing man.
Father's Day is coming up soon and I've been thinking a lot about my dad. Our family is going through a really rough time and we've been reliving the past. I am planning on writing about how awesome my dad is this weekend. There is so much stuff to cover and there is not enough time now.
One thing that is awesome about my dad is that he has been an amazing grandpa. He was practically a father to my son during the first few years of his life, and they continue that bond to this day. This picture is one of my favorites. It seemed no matter what my dad was doing, Tim had to be right there. In fact, Tim has been extremely close to both his grandfathers and that is one of the reasons we are having such a hard time now. Tim's paternal grandfather passed away yesterday. It wasn't unexpected, but that doesn't lessen the pain. He was a great guy and will be dearly missed. Even though I was no longer married to his son, I still considered him my father in law. He helped me and Tim when I was a single mother. He also was very kind to my daughters and would bring them gifts and hug them as if they were his. I will never forget his kindness, generosity, and especially his humor. Our world will never be the same without him in it.
This is Max. He is my dog. Technically he belongs to the family, but it was my choice to have him join our bunch. He was found abandoned by a creek and the person who rescued him couldn't keep him. Normally I don't like dogs like Max, but I think there was just something about his circumstances that touched me. I love taking care of the unloved and unwanted, so Max was perfect. Of course my husband said no, but I didn't listen. Max needed me.
It was hard at first for Max. Apparently he had been abused in some way. If someone would hold a brush around him, he would attack it. He had this horrible habit of peeing anywhere if someone raised their voice. He also had some obsessive habits such as licking the other dogs' faces and chewing on sheets and blankets. It took a lot of patience and love to help him recover. He still has some residual issues, but otherwise he is normal.
What I love about Max is he always seems to be tuned in to how I feel. When I am having a particularly bad time with my balance, he will be there to steady me. If I'm feeling down, he will lay down beside me so I can hold on to him. He is my rock. My son says he likes Max because he always looks like he's smiling. This week I've been relying on his smile more than normal.
This has been such a sad time for us. I helped a dear friend while her dog had her first litter a week early. We were planning on having one of the puppies. As of today there is one left and it is not good. They were born too early. I am sad that we lost our puppy, but I am more heartbroken for my friend who has worked so hard to keep the little ones alive. We will have our puppy someday. We have also had to deal with two deaths and one loved one who is in the hospital and having a very hard time. We have all also been pretty sick with some kind of virus. I have worried that I may end up in the hospital, but I have pushed through and think I may be getting better. Through all of this Max has been right by our side. His smile has been so comforting when I didn't think I could take anymore. We will get through this.
I've been working on my family history lately. I have this need to know where and who I come from. Family is very important to me. I am fortunate that I come from a close family. I grew up spending summers with my grandparents in the country. My brother and I practically grew up with my two uncles and aunt, who were 10 and 8 years older. I took for granted all the family dinners with aunts, uncles, cousins, grandparents, and assorted friends and family who would join us. Now family dinners are usually my parents, my husband, myself, and our children. Occasionally we do have more relatives join us, but my brother and his family live in Massachusetts so we don't get together often, but those times are very special. My brother is probably one of the funniest people I know along with my son and my grandfather. They are so similar in personality that it is scary sometimes, but I am comforted that my grandpa's sense of humor continues on. I can't imagine what the world would be like without it.
I have never met the woman in the picture above holding the baby, but she has influenced how I view life and family more than any other person. She is my grandmother Betty Emrich and she's holding my mom. She died when my mom was 15 when the car she was driving was struck by a train while she was crossing the tracks. The signal had been activated on the wrong track and the tracks ran through the town obscuring the view of the oncoming train. It was a tragic accident. She left behind my grandpa, my mom, and my aunt who was 11 at the time. She was such a mystery to me growing up. I had heard snippets here and there, but I never felt I knew enough. My Aunt Eleanor told me that I looked like her. I figured she had great sense of humor because she married my grandpa. I also knew that she was the love of my grandpa's life even though he remarried. I guess that's all I need to know.
Her life and death has shaped who I am as a parent. I've loved my kids as though I could be gone any day. Life gets in the way sometimes and we get busy, but we can't lose sight of the things that are important. The day she died, my grandmother and my mom were playfully teasing my aunt. When the girls left for school, my aunt was so mad, she wouldn't say goodbye. That was the last time my mom and aunt saw her and there was no hug and kiss and "I love you." It breaks my heart to know that my aunt has had to live all these years with that regret.
That is Betty's life lesson for me. Live life like it is your last day. Love like it is your last day. No regrets.
I had this great plan for the Memorial Day weekend. I figured I would do all of my running around and obligatory family stuff on Saturday and Sunday. That would leave me Monday to rest and recover before heading back to work. Since my Meniere's attacks are getting sneakier and more frequent, I decided I would start listening to the professionals and rest more. Well on Monday we got an invitation for another family get together and even though I was wiped out, I agreed to go. Usually when I'm feeling bad I just have the rest of the family go but I thought I would go for a while. You see, my not going to family things and staying out of the fray has been misconstrued by others and I needed to be able to say in the future that I'm not always antisocial. Yeah that's me. Instead of explaining what I go through and hope others will understand, I put myself in a situation where I am pretty much certain I will spin out or something along those lines.
Yes I did have a vertigo attack. It was mild, but I'm starting to get a head cold and that messes with the fluid in my ears so it was a little scary. The most frightening thing is the fact that I had no warning at all. I have always had a sort of feeling that something wasn't right before I would have an attack. Not this time. Was it the virus? The exhaustion? The med changes I just went through? Or maybe this illness is taking on a new face for me. I couldn't even make it to the car unassisted. I'm having some trouble processing what this will mean for me. I work full time and drive myself. I also have three kids and dogs and cats to take care of and I have to do it all.
Going back to work was not a wise decision because there was so much to do and I felt horrible with this cold and I'm still exhausted and unbalanced. My manager agreed to let me have tomorrow to rest. I have several documentaries in my Netflix cue and an appointment with the couch for the whole day. No work emails, internet, phone or any other distractions. Maybe this will be just what I need.
For most of my life, I've had a fear of birds. I mean real, terrifying, irrational fear. My husband found it funny, even buying two parakeets to torture me. His way to help me with my issues has always been immersion therapy without the gradual steps of exposure. I understand where he's coming from, but it doesn't help when this thing is flying around the room at your head because it doesn't want to get back in the cage. To be honest, when the first one died I was secretly relieved. When the second one flew away because my husband cleaned the cage outside, I was absolutely giddy. That's one fear that wasn't in my face constantly.
In March I was transferred to my company's corporate office. One of the things that I noticed about the campus was the abundance of geese. They were everywhere. And they had no fear of humans. Great. I started out trying to get into and out of the building as quick as possible. Eventually I started walking on my lunch and ended up mere feet from these creatures and they didn't attack me. That led to me talking to them and eventually giving them snacks. I conquered this fear on my terms and on my own. I'm not ready to go out and get a parrot and perch it on my shoulder, but I'm miles from where I was months ago.
Some of my other fears are not so easy to conquer. They are fears I rarely discuss with anybody, including my husband. I've lived with them for 10 years - they hang over my head daily. What makes it harder to deal with is the fact that most likely one, if not all, will happen to me. Fear is a constant companion for someone with a chronic illness. What makes it so hard is Meniere's disease is not fatal so my fears haven't been taken seriously by people close to me. My grandfather had it and all he had was hearing loss and a few drop attacks. He also was in his 70's while I was 30 when I was diagnosed and this is a progressive disease. I have a 40 year head start. Lucky me.
My biggest fear is probably the one that is the least life threatening. I'm horribly terrified of losing my hearing, yet I have already lost a good bit of it. I guess the reason it frightens me is that I would give up all my other senses to keep this one. I can't imagine not being able to hear music or talking with my family and friends. Don't get me wrong, I am not trying to whine about this, but it is really hard to face the fact that I may be on borrowed time. I could learn sign language. I have considered it, but for right now I don't see any benefit. The day it took the lady in the cafeteria a few times asking what bread I wanted before I could understand was the day I realized it wouldn't help me. She was frustrated, I was frustrated, and it didn't help when I told her I was hard of hearing. Everybody around me turned to look at me and the woman gave me a very strange look. How is sign language going to help in that situation unless I take along an interpreter wherever I go? I just pack my lunch now. Situations like that make it difficult to use my standard smile and nod approach.
Another fear is that I will seriously injure myself due to my balance problems. Now when I am having a bad time with my balance and fall, it is just embarrassing and I feel foolish. As I get older I risk serious injury that could prove fatal. My work in the medical field has exposed me to just how dangerous hip and vertebrae fractures are in the elderly. I also personally know of someone how died from a blow to the head from a fall. He had an attack of vertigo in the shower and fell, striking his head on the edge of the tub. I really fear that this could happen. I can't always prevent falls. Sometimes I have an attack without warning and have no way to steady myself.
This last fear is probably irrational, but this has already happened to me so I know how horrible it is and don't know if I can face it again. When I was first diagnosed, I spent the first 6 months or so in a constant state of unbalance. I could not drive, I could not go to the store alone, and I couldn't walk straight. Watching television was beyond difficult. The most frustrating thing for me was that my vision had to compensate for what my ears normally did. That meant closing my eyes and being in the dark made things much worse. I would lay in bed with my eyes open until my body gave up because closing them would give me horrible vertigo and nausea. I still have it sometimes, but nothing like that. The longest attack I have had since was a couple of days. Most are minutes to hours. I can handle that. I don't think I could handle the 6 months or longer. I seriously don't know if I could live like that. It is a hard thing to say, but true. Walk (or stumble) a mile in my shoes or the shoes of any other sufferer of Meniere's and then tell me how I am supposed to feel. I don't dwell on this fear, but it is sort of always there. I can't talk about this fear, because I don't want to bring everybody around me down. My poor husband has enough to deal with when it comes to my illness. He is educated enough on it to know that people with Meniere's have a higher rate of suicide than normal people. That is one reason I had to walk away from Meniere's support forums. Several people on these boards took their own lives while I was a member. I just couldn't handle seeing people like me giving up on everything. This illness is insidious. It gradually takes everything away. There is no cure and treatments don't always help and aren't covered by insurance. If you become so sick that you can't work, good luck getting disability payments. It can be too much. I hope I won't get to that point.
So fear is a big part of my life, but it isn't my life. I still manage to do well despite my limitations and sometimes I forget I have a chronic illness. I even have hope that some day I can look back and say I conquered these fears on my own terms. Until then I'll just keep spinning.
I was officially diagnosed with Meniere's Disease ten years ago, but I have a feeling I've had it for a while longer. The signs were there, but nothing bad enough to do anything about. My journey is like that of many others with the illness. It took me a while to get a proper diagnosis because my doctor didn't believe I could have Meniere's. My grandfather suffered from it in his later years, so I thought Meniere's may explain the problems I was having. There was no way I had Meniere's because it doesn't run in families and it is too rare of an illness for me to have, but he sent me to an ENT anyway. When he told me that I in fact had Meniere's Disease, I was not surprised. He indicated there can in some cases be a familial link. At that moment I was so happy that my doctor was wrong that I didn't understand fully what my life had become. What he said next tore my world apart and shook my faith in the medical profession. He gave me a brochure on low sodium diets and told me to go look up Meniere's on the internet. His last words to me were, "you'll learn more than I know. Come back in six months." Come back? If you don't know what to do for me other than send me home to figure it out for myself why should I come back?
At that point I truly was alone. I was a stay at home mom with three young children in a troubled marriage who couldn't drive and could barely walk without assistance. On top of that, I was losing my hearing. I could not and still can't imagine a life without it. I got down to business educating myself and doing everything I could to live a normal life. I had three children to raise and making sure they had a good upbringing was more important than anything I was going through. I was eventually able to drive again and even manage to sometimes drive on the highway. I also made it through college and carry two professional credentials. My marriage is stronger than ever, but I think that is partly due to my husband realising that nobody else would put up with him. I still have my bad days where I lay in my bed crying "it's not fair," but overall my life is good. Dealing with a chronic illness can be a blessing in some ways also. Knowing how fragile things are makes me really appreciate what I do have.
Here are the main symptoms of Meniere's Disease: 1) Periodic episodes of rotatory vertigo or dizziness. 2) Fluctuating, progressive, low-frequency hearing loss 3) Tinnitus 4) A sensation of "fullness" or pressure in the ear.
Frequency and intensity of symptoms vary among individuals. Some people are so disabled by the disease that they can't work or drive. Others have a milder course that allows them to live their lives completely normally. I am in somewhere in the middle at this point. I don't know what my future holds, but I'm determined to enjoy every moment.
I'm a wife and mom of three living in Ohio. I was diagnosed at the age of thirty with Meniere's Disease. My life is a daily struggle managing a chronic illness with raising teenagers, caring for a growing brood of dogs and cats, a full time job and keeping a home. It's all about balance, which can be hard to achieve when you're spinning wildly.