As you can tell if you are reading this from my blog, I have changed my look.
If you dropped by while I was trying out new things, I’m sorry for the confusion.
I will be updating my pages and little things over the next little bit, but I don’t think you will really notice.
If you missed the mess….what do you think about the look? I’m still tweaking, but for the most part, the appearance is complete.
*BIG SMILE* I accomplished something!!
I was looking around for information about Meniere’s, seeing if I could find anything new, while on the Vestibular Disorders Association (VEDA) web site I saw a call for people with unilateral Meniere’s for a research study. They are trying a new drug to help with vertigo. I thought what a great way to possibly help yourself and others. Unfortunately, this is for patients who have unilateral Meniere’s and I have Bilateral Meniere’s. Hopefully, others will be excited about finding out more about this research study.
You can find all the information about the research study here:
On Monday, January 20th, my husband left for Las Vegas (I’ll explain more of this later if anything comes from it). He left the house at 11am, his flight was supposed to leave at 1pm but it was late. By 2pm he was on his way, and by 3:30pm I had broken my foot.
I keep thinking how nervous I was about him leaving on this trip. He’s been away before and yes I was a bit nervous, but this time I was scared. I just didn’t feel good about it. Perhaps it was because of the many asthma attacks I’ve been having, perhaps it’s because I realized just how phobic I have become about so many things….I don’t know…but I know that I’ve had feelings like this before, and they seem to be almost premonitions. Something didn’t feel right….and soon something big wasn’t right.
How did I do this? Well, let’s see if I can explain, I had to explain it over and over and over…but I will admit here, I’m not 100% sure exactly how it happened. When Stuart is out-of-town we move my essentials downstairs, so I won’t have to use the stairs while he is gone, I have plenty of food in the fridge, and I’m all settled on the couch. Oh, and one big thing, I promise not to try to walk around the house without my walker, just in case vertigo hits out of the blue, or the disequilibrium knocks me off my feet. (we all know this has happened….often) So, I got up to go to the bathroom, wheeling along with my walker. Unfortunately, our bathroom doors are TINY, and we haven’t been able to find a walker that will fit through them, so I leave my fancy walker at the door and hand off to another walker in the bathroom. The walker in the downstairs bathroom has little wheels. The walker in the upstairs bathroom doesn’t have wheels, I’m used to it. I caught my foot on the little wheel and was thrown off-balance a bit. The world swirled and I stepped sideways and fell up against the wall, only a few inches away, I just kind of leaned up on the wall but my foot turned, and I felt a SNAP! I’m really not sure which foot hit the walker, or anything, it happened so fast, and I was far from being stable.
I knew somewhere in the back of my head that it was a break. But I didn’t want to admit it. I often turn one foot or the other, it always hurts, often swells a little, but is alright. I just ice it over night and the next day it’s better. So I packed it in ice and elevated my foot. Then I looked at it, and it looked a bit too puffy….getting a little blue. I touched it, it just didn’t feel right. Dangit! I was a bit paralyzed as to what to do. Call an ambulance? For just a broken foot? Ugh! And trying to talk to a 911 operator when you can’t hear them…well that was scary…but really I just couldn’t bear the thought of calling an ambulance for a broken foot. That’s not an emergency. I could feel my toes, they weren’t blue, I had sensation all over my foot….not an emergency. And I was still a little bit in denial. “Maybe it was a tendon just snapping over the bone. It might just be a bad sprain….” But as the night went on, I was more concerned. I instant messaged a friend who I knew would help if he could, and he would at least calm me down. He did calm me down, but he couldn’t come help, I understood, he has a pretty severe chronic illness himself and lives about 2 hours away. Finally, I saw an old friend who I hadn’t seen in a long was on-line, so I gathered my courage and instant messaged her and asked if she could help me. That was very hard. She has a family of her own, a 3-year-old little girl….a busy life….and we haven’t kept in the best of touch. Don’t get me wrong, she hasn’t forgotten me, she surprises me with cards and such, and we see each other on Facebook, but it hasn’t been the same since I’ve gotten so ill. I haven’t seen her in person in a very long time, we don’t have long phone conversations, it’s different. I asked if my foot was all swollen and blue the next morning could she take me to Urgent Care. She said, “Yes!” So the next morning I texted her…I had to go.
Another fear I had to face, going out in public. Since I’ve been having so many asthma attacks I’m very scared to go out in public. So many triggers out there, and only my inhaler to help. But I did it. We went to Urgent Care, and it was FULL. A minimum of a TWO HOUR WAIT to be seen, not including if you need x-rays and such. So we ended up down the street at the Emergency Room. I was seen right away. Then sent to X-Ray. Then taken to a room…in the children’s ward (that was strange, but I guess they had an empty room there). The doctor looked at the X-Ray and said I had a spiral fracture of the 5th metatarsal (right above my pinky toe), she said I had to see an Orthopedist specialist. Then they wouldn’t let me eat or drink anything. I was there for 7 hours at least. Finally, the Orthopedic Surgeon came. He decided surgery wasn’t necessary, and I could have a boot instead of a non-weight bearing cast. I didn’t realize that there was a possibility of surgery, but I was so ready to get out of there, and I could tell my friend was anxious to leave, I didn’t even ask….just let me go. Later I looked at all the paperwork, and there was a possibility I needed a pin in my foot since it was a spiral fracture. They discussed putting me in a non-weight bearing cast, but decided not to because I would be at home alone. If they put me in that kind of cast they would have kept me at the hospital until my husband came home. After a little research I’ve learned this is the most common broken bone in the foot, and it takes a long time to heal because there isn’t a lot of blood flow to that area….*sigh*. I’ll have x-rays again in a couple of weeks if it’s healing well – great, if not, surgery could still be a possibility. I have faith all will heal just fine.
Whew! What a day!! After I got home and all alone, I realized I needed a change of clothes from upstairs, and someone needed to take care of Max, our cat…..so again, I overcame a phobia…I reached out again for help. I texted my neighbor, she has a key in case of emergencies, and asked if she could come over the help me a bit….I’m a lucky person that I have a neighbor who is such a dear. I cannot say how much I love and respect this woman! It took a lot for me to ask her for help, but she came! She helped, and even just visited with me for a bit.
Stuart came home the next night. I had taken care of an emergency! Somethings I probably could have done better, but I did it! And I’m pretty proud of myself. Stuart is less tense about leaving me alone now. (FYI..I did tell Stuart what was going on while he was on his trip. I thought about not worrying him, but that’s not the way we are, we communicate about everything, and it made it easier.)
Sometimes no matter how prepared you are, something might happen you just didn’t expect and you have to deal with it. No matter how scared you are.
I read about this a lot, and I wonder about it myself….when we go places, especially to the doctor and we tell the staff that we need special attention to be understood, or to understand….or to walk, ect… Why do we have to say it again, and again, and again!
Why don’t they listen to what we say? It has always bothered me, even before I became as ill as I am, that first you would fill out all the paperwork stating why you are at the doctor’s office, then you have to go over it with the nurse, then again with the doctor….why don’t they just communicate? Do they think I’m lying? “If we ask her the same questions over and over we might get different answers.” Just talk to each other, and listen to your patients, please.
Now that I have issues that must be addressed for me to get what I need from a doctor’s visit, it’s worse. I try to be very understanding about people forgetting that I can’t hear, or that I have balance issues and use a walker, therefore I walk very slowly. I realize that humans take a long time to develop habits, and most nurses and staff I see change a lot, or I don’t go to their office much, under these circumstances I do my best to pleasantly remind them, over and over, that “I can’t hear you, I need you to look me in the face so I can read your lips, and I need you to talk slowly.” They will say they understand, but then they will look at their computer and talk instead of talking to me. Often I will just act like they said nothing to me. My husband will turn and tell me what they said and I will answer, “Oh, I noticed you were speaking but since you weren’t speaking to me I thought you were talking to my husband.” I get a blank look, then a light bulb….OH yeah! She’s deaf. Then they do it right for a question or two, then it goes back to talking where I can not understand. A friend of mine who writes at: Another Boomer’s Blog, says she wants a shirt that says DEAF on the front and STILL DEAF on the back! Yep, Still Deaf. She also has some great posts about this subject, you should really check her out, especially if you have hearing issues.
As I said, I do understand that most people are not used to dealing with people like me. They aren’t used to dealing with the deaf, and they aren’t used to dealing with someone who has to walk slow with a walker, or suddenly sit down because of balance issues. Yes, I have nurses try to show me to my room and just take off and leave me. I just say, “I’ll get there sometime.” If they turn a corner, I sometimes just stop. When they return, I simply tell them, “I didn’t know which way to go, I couldn’t see you.” I really don’t mean to be rude, and I am compassionate, they are used to doing their job one way, and I’m asking them to change. However, what happened to customer service, why are people not mindful of what they are doing….everything they are doing? If a patient comes in, you pay attention to their needs, PERIOD. Just as you should for any person you meet. (you open a door for someone who needs it, you pick up something a child dropped…..you help people out when you see it, why doesn’t this happen all the time? Or am I just assuming most people would treat strangers like that?) We need to pay attention to others. Show love and compassion, why do people often have to be the “squeaky wheel” before they are paid any attention to?
At my otologist’s office I do not accept that the staff is not trained to deal with people who are Hard of Hearing or Deaf. When I check in, they are looking at their computer….these same people have been working with me for over 3 years, I normally check in with the same person, he knows my name, he knows my husband’s name, but he is not trained to deal with a deaf person. He does finally understand, and he moves his mouth more clearly than the other front staff, that’s why I try to check or out with him. But why are they not trained better? I have one nurse who normally works with my doctor, she is a dear sweet person. She really cares. Sometimes she will slip up and speak while not looking at me, but she usually catches it and quickly changes. Also, she will come and get me in the waiting room, the other nurse that calls me back occasionally, just calls out my name. I can’t hear her! Why does it not say in big red letters on my paperwork, DEAF….and any other instructions they may need. Why?
I had a test performed a couple of years ago at a different hospital. I had to check in and I was shocked at how trained the check in person was. I don’t know if everyone there was as great as she was, but she said they all had training on how to deal with certain situations. She spoke clearly, looked at me, marked it on my chart that I could not hear and would need assistance. My husband was with me, but that didn’t make a difference, they treated me like I was the patient and I had needs, they didn’t treat me like my husband was supposed to pick up the slack for me. This hospital assigned a volunteer to walk me to my testing area, to stay with me until I was called back, she escorted me to the room I was to be in and explained to the person performing the tests about the situation. You could have blown me over with a feather!
So now, I ask why? Why don’t people listen to us? (no matter what your special need) Why aren’t more people trained like the staff at the other hospital I went to? Why aren’t we all more compassionate towards others?
Yes, people should understand when we need special arrangements so we can be less disabled and more independent. Not only that, but we need to get the same care any other person would, that is our right.
On the other hand, we also need to give people some slack, no I don’t mean the whole rope…just help them learn. Think about the person who is treating you this way, how have they been trained? How hard would it be for you if you were in their place to suddenly have to do everything different from you are used to? What if this person has just dealt with an emergency and they are still shaken up but trying to do their job without letting you see it? There are just so many things that can contribute to why someone isn’t understanding about what we are going through. Don’t get upset….at least not at first….realize, it’s not about you, it’s the fact that they are human and humans are not used to change, and we simply don’t get it all of the time. Try to pleasantly remind them what you need.
My husband used to always step in and try to make things right, but I want to understand the doctor and nurses myself, I don’t want to need him to always be there….plus, I’m not sure he always remembers everything they say. So I started telling him to be quiet unless he was asked something, or if he needed to ask or input something (he is my caregiver after all), but if he talks he will have to stand by the doctor so both of them can face me, so I can hear both of them at the same time. No more him beside me, and the doctor in front of me. There are types of interpreters that I can request to help me at the hospital or doctor’s office, I will explain these in a later post, and why I haven’t taken advantage of them.
I have found that simply not answering, or acting like I’m lost because I can’t keep up, has helped. Just asking again doesn’t seem to do it most of the time, but if you make it harder for the person who is learning how to deal with you, then they are more likely to change their ways faster.
Of course, some people will never learn.
and often the people closest to us are the hardest people to understand a lot of this….but that’s for another post.
“Change is inevitable, growth is intentional.” -Viktor Frankl
In the beginning of 2013 I was so sick I didn’t even write a New Year’s post. I was so depressed, and so very, very ill. (yes, I know this one is a few days late, but it’s still the beginning of the year, right)
So what will the 2014 bring? I’m not sure, but I know it will be a change.
Nothing is ever permanent. I may feel I’m always sick and feel horrible, but if I look at every day, every moment, that isn’t true. It’s not a constant. Life is not constant. I want to remember this, and work at being mindful about each moment.
I don’t want to make resolutions, because, let’s face it, very few resolutions are actually carried through. But there are a few things I want to strive for….if I don’t get there, it’s OK. Things change.
There are many more things I could add to this, but as I said, this isn’t a list of resolutions, just some plans that may change as the moment changes.
note: for some reason WordPress would not let me insert a picture in this post…sorry for just words, words and more words.
I got the best gift on Christmas morning. It wasn’t under the tree (that would be pretty hard since we didn’t have one…but it wouldn’t have fit anyway). It wasn’t wrapped. I couldn’t touch it. But it was the BEST present I have ever received!!
When I woke up Christmas day I didn’t have a headache!!! Not at all!!! I can’t recall waking up without a headache since I was 11 years old. I have chronic daily headaches. I always have a headache that ranks about a 2-3, then it’s much more if it’s a pressure headache or migraine. Normally, I wake up with about a 6 or more because of the Idiopathic Intracranial Hypertension. Lying down all night, even with my bed on an incline, the pressure just builds. There have been many days I’ve said, “Oh how I wish I could just wake up without a headache, just one day.”
Merry Christmas to me, I got my wish!!! I woke up with NO headache. Most of the day was headache free. It did return that evening, but those hours headache free were magical! Waking up headache free was simply miraculous!
I do believe in the magic of Christmas!
Thank you Santa! I hope you can get around to giving out a few of the things I asked for on my Christmas List.
I feel like a little girl.
I wanted to let you all know I’m OK, I know I haven’t been around for a while.
I have had some challenges – emotional, physical, and mental.
First, the trip to Las Vegas, was postponed and we have no idea if it will be rescheduled. This doesn’t give me a good feeling about the company, and that’s sad, because I think Stuart would have liked that job, and we could have saved a lot of money living there. But hubby has had other interviews since then, and it looks like he will have multiple offers…I’m just not sure if he will be happy at these jobs, but right now we don’t have the luxury of him being able to be that picky, and that worries me. We also won’t be able to save as much money as we would have at the job in Las Vegas. (about the same salaries, but in places where the cost of living is higher)
The week of Thanksgiving my father was diagnosed with liver cancer. He has been sent to many
doctors for many tests, and still he must have more test to determine if the cancer has spread. If it hasn’t the cancer may be operable. It appears to be contained at the moment. I feel guilty I can’t help, and I feel guilty that I would be afraid to help if I was able. I took care of my mother when she had cancer, it was the most difficult thing I’ve done, and the most rewarding. But my mother and I were very close, my father and I have always had a strained relationship. Don’t get me wrong, I love him, we simply have different outlooks on things, and I don’t see him being the easiest person to care for. I feel like that makes me such a bad person. However, I also know, if I was able, I would swallow my fears and help in any way I could. Right now I am hoping he is not in pain, and will not have to go through the horrors of advanced cancer. His birthday is tomorrow, he will be 81. I don’t think he looks it. My father has a full head of the most beautiful white hair. Well enough about that for now. I’ll know more soon.
My asthma has been acting up horribly. I start coughing and wheezing with just the tiniest bit of exertion, and just forget about laughing, that will send me into an asthma attack faster than anything. I almost had to have an emergency visit because of it, but a double treatment with the nebulizer calmed things down. I was doing better for a while, but it’s sad to think that I have coughed every day for over a year. I have also been having sinus drainage, this has not helped the cough, and sore throat (from coughing), but I can tell the difference in the cough. The production is different…let’s just leave it at that. My whole body hurts from coughing.
I haven’t been able to make it to the audiologist to have my CI adjusted, so people are still sounding a bit like they have huffed helium. I’m getting awful sound headaches after wearing my CI’s for just a short amount of time if there is more than one noise in the room. (like the TV and Stuart talking). But I’m pleased to say, I’m still hearing more music than I have in years!!
I’m having some pretty bad headaches/migraines lately. I’m not sure the Botox really helped much this go around, and that makes me pretty darn sad. However, I think a lot of it is my Intracranial Hypertension. I wake up with a horrendous headache almost every morning. Another major trigger, is a deviation in sleep pattern, and I can tell you, my sleep pattern simply doesn’t exist! I am not sleeping well. Some days it’s because I cough all night. Some days I don’t know what it is. The other night I felt like things were biting me….like little no-see-ums. I drove me crazy. So sleep is erratic, and that’s a major trigger for my migraines and vertigo. Yes, that’s acting up too. I keep feeling like I’m on a boat, not a great feeling.
I’ve noticed I have pretty severe social anxiety. I do not want to go anywhere. I don’t want to be around people, especially people I knew before all this started and I haven’t seen much of them (if I’ve seen them at all) since then. I don’t want people to see that I’ve gained so much weight. I don’t want to be in a situation where I’m lost because I can’t hear. I’m terrified to have an attack in front of people. I feel I have so many phobias now I live in fear. The only places I’ve been since we have returned from Tucson is to the doctors, and to a couple of restaurants (this took a lot of courage for me, and we had to go on off times so the restaurant would not be crowded). Every time we go out, even to the doctor’s offices, I get so worked up I have to come home and rest. (all my spoons are gone!)
I don’t feel like anyone understands me. I wish I had some local friends with chronic illnesses that felt well enough to visit. I think part of this started because I can no longer drive, so I can’t go anywhere by myself, this puts me in the mind set that I shouldn’t be out. Or maybe I’m just trying to justify the phobias a bit more. It’s not good to be isolated, I know, but I’m really scared, and often I get so sick before going out that I simply can’t go. You can’t imagine how many doctor appointments I’ve had to reschedule.
On the other hand, there are days I think I can do things I used to do, so I try…and usually fail miserably. This doesn’t help my self confidence about going out.
I think the title of this blog post is wrong. This turned out to be much more than a little update, and I’m cutting it short!
I’ll be back soon. I have much to share. Plus photos of my new CI’s.
Dearest Santa please check your list,
I’ve tried to be, extra nice.
I could ask for a lot,
but am so grateful for what I have.
I’m writing my letter to ask for special things….
Dear Santa please hear my plea,
because what I want is not for me.
So many people,
Need you so much more.
There are those who are ill,
Who can’t pay their bills.
A friend needs a kidney,
How can I think about me?
My father has cancer,
please give him what you can.
I have friends with no income
and some losing their homes.
Please think of the children,
who live in a country that’s torn.
I ask of you this year to give some relief
so many are hurting and feeling much grief.
Please help those who need so much.
A Christmas Miracle filled for one and all,
filled with health, healing, peace, and love.
May we all find more balance in our lives.
Thank you Santa for all that you do,
I know I’m asking for much,
could you please help one or two?
With love to you and all of your helpers.
I’ll always believe,
Wendy
Please note…I’m just going to write and not pay too much attention to grammar or spelling or anything like that, I’m not going to re-read because I don’t want to filter what comes out. This is an experiment, something I sometimes do in my journal….let’s see what comes to the surface….
Acceptance is not the same as giving up, but if I’m not careful it can slip into that. I’ve accepted my illnesses, especially Meniere’s with hearing loss, for a long while now, and I’m really ok with it. I realize things aren’t going to get much better, and my not get any better….now is that giving up? not saying I’m OK with it, but saying it won’t get better? When my husband was worried because I had been feeling worse for a while he wanted me to think about going to the doctor and he said, “I just want you to get better.” I got so mad and upset. What? Get better? What delusional state are you living in? Do you really think I’m going to get better??? I felt like he didn’t understand….then I realized…after a long discussion that he meant he wanted me to feel better than I had been for the past month, he felt something new was wrong and wanted me to check it out. Then I thought….could I get better? Have I given up? and decided, yes, to a certain extent I had given up. I was so determined to accept my life as it was, I had given up that it could be better. Maybe the hearing can’t get better….well, the doctor has told me that much. And possible the vertigo will never get better….but who knows for sure, I accepted my fate. I’ve also accepted living in pain. Hip pain, pelvic pain, Vaginismus, neck pain, arthritis pain….and my other illnesses….I accepted my fate, I’d live with these forever, but really, do I have to? Yes, I’ve put these issues on the back burner because the Meniere’s, Hearing loss, and Migraines have taken over my life, but as I’ve found that my Migraines can get better, I can hear better (thanks to the computers in my head) maybe not the same or as well as i once heard, but I can hear….why should I not believe some of my other issues can be helped. No, I’d given up. I’d given up on having a normal sex life, given up on being able to walk for any distance without being in horrible pain, given up on so much…. I feel better that I’ve accepted the things I cannot change, but I’m ticked off at myself for giving up on the things I could. This has changed!! I’m not giving up on getting better…the things that can get better….I’m not giving up on me.
I had a realization the other night. I’ve been having full blown panic attacks lately…yes, feeling like I can’t breathe, my chest tightening….everything. I realize most of these have been triggered by the loss of income in the family, then me being denied my disability claim, and I’m still mourning the loss of Sandy. (yes, it’s been over a year and an half) Losing a friend who was so close to me for 19 years has taken it’s toll on me. I can honestly say I have not grieved for anyone more than Sandy except for my mother. Maybe it’s because of everything else that has happened in the past couple of years, everything just building up on it…but I don’t think so…my Sandy girl was just so special.
I HEARD MUSIC!! Yes, that’s right! I actually heard music for the first time in at least 3 years! Stuart was out of town for a job interview, and I was watching a movie, they started playing Credence Clearwater Revival’s Have You Ever Seen The Rain? And I actually heard it! I understood the words, I heard the music!!! This new CI likes music. I still can’t understand many spoken words on TV, but I heard music! I didn’t realize I missed it so much.
Well, I think that’s all for now. I’ve been having a hard time keeping my CSF pressure stable, and today is a bad day. My doctor raised my dosage, and I need to take my meds. I also have to see a neuro-opthomologist. (Yes another thing I had accepted, and felt like it wouldn’t get better, I know it won’t go away, but hopefully, it will get better)
My asthma symptoms were much better but not great, my doctor added another medication, and now I’m much worse. Bah! Hoping this will get better.
Oh, Stuart’s interview in Las Vegas went well. We are going to go look around soon and then he will make a decision. Lot’s to do…well, not as much as I thought, they said they will pay for the move. : ) But selling the house when we aren’t here, that is a scary thing….at least to me.
Keep meaning to take pictures of my new Cochlear Implants…I want to take a photo of the new beside the old, so you can see the difference. It’s amazing how much it changed in just one year….but I don’t think it will change that drastically again for a while.
More soon….thanks for putting up with my babbling. AT least this has some coherent thoughts some of my journal free writing doesn’t.
Yes, I know MOST people are denied disability the first time they apply, but this is the first time I’ve heard this crazy reason!
I was found to be DISABLED….Yes!
But was Denied because I waited so long to file. What?So what is too long? I had to be disabled before 2010. Again, What? My disability date was November of 2009! So what are they reading? And how can you screw up that bad?
So the appeal has been started. We do have a lawyer who is taking the case, and she is kind of scratching her head asking….What?? too. This time I will have witnesses as to when my vertigo actually started interfering with my work. The disability date I used before was the date I had the vestibular testing, since that’s a requirement for Meniere’s to be considered a disability. However, in 2002 or 2003…I’ll have to look it up…I started having severe vertigo, was sent to the emergency room. I was managing a Custom Frame Shop at the time, can we say Dangerous? I was found on the floor in the frame shop in full spin, another time I made it to the bathroom and was in there for close to 3 hours throwing up. Fellow employees from a different part of the store had to take me home more than once. We had to close the frame shop many times. I had to quit because of my health.
There are more stories like this…soooo, they denied my disability claim that started in late 2009, now they may find out I was disabled before that, and they have to pay from the date of disability. Think it would have been better if they had just approved it the first time.
Even if I had not worked within the given time, it’s not fair to be denied. I was lucky, my husband made enough money that I didn’t need disability, but times have changed. I need this now. I should have filed earlier, but I didn’t. Now, I’m being punished for not taking money from the government when I didn’t need it.
So as I said before….What???
Picnic with Ants 