I don’t talk about my family often, other than hubby and the furry babies. But there is something on my mind, something that may explain part of sadness.
My father had liver cancer in 2013, he went through treatment (chemoembolization) and they got it. It was a much easier way to treat cancer than anything I’ve ever seen. He has been doing well since then….
Until his check up in December, well even then they didn’t think anything was seriously wrong. When he had his initial cancer he had a large tumor that they got rid of, and he had a tiny little tumor that they left alone, but they have watched. It hadn’t grown at all then at his December check up, it was an itsy bitsy bit bigger, so they decided to go in and do Radiofrequency ablation (RFA) and get rid of it. They did this the near the end of January. During that procedure the doctor found more 2 tumors.
This was supposed to be an in and out no big deal procedure, but it took my father a while to recover from it. Last Monday he had the chemoembolization again on the remaining tumors, this procedure is less hard on him. Now this coming Monday he will have RFA again on both of the tumors.
My father is 82 years old. This is really hard on him. It’s also really hard on my sister. She is taking care of him. She was taking care of him after his first surgery when I was put in the hospital for having seizures. She was so worried about me she got my uncle to come stay with my father and came to help me, then she turned around and went right back to care for my father again. For over a month now she has had no life of her own, she has only been taking care of others, and I don’t know how much longer she will have to do this. She is normally very involved in her grandchildren’s lives, I know this has to be hard on all of them.
I haven’t been able to go see my father.
I can’t help either of them.
I can’t help but think….what if…
and I can’t help but feel worried, sad, and guilty.
When you have times when you can’t help others who you love, how do you handle it?
I shouldn’t feel guilty for being sick, but at times like this, I do. Well, I feel guilty that my sister has to shoulder all of this on by herself. I feel guilty that I can’t even be there to hold my father’s hand. And I feel guilty that I felt better today than I have since I can remember.
After days of having vertigo constantly, yes I had 2 days of rotational vertigo that went on every single second, I woke up feeling amazing today.
I had a really good day…..it’s hard when I think about what my family is going through.
This is a stream of thought post. I just needed to talk and get some things out. So no fixing of grammar or anything. One thing I do want to say before you read this…..I’m not suicidal.
Is everything just so hard right now or is it the life through steroids?
I feel like I’m slipping away. I don’t know who I am half the time. I’m really not handling things all that well….yet in the next moment I am….then I’m not…then I am…then I’m completely melting down and that has been the last two days, and
I just feel like a weight is on me that I cannot lift and it is crushing me,grinding me down further into the ground past the point of breath….I’m buried alive….why, why cannot I still just not die.
Oh I am so ashamed to feel this way. I am just so tired. So tired of feeling the ups, the downs, the hope, the devastation when life kicks me in the gut over and over. And I can’t believe I’m actually writing these feelings out here where everyone can read them.
I do not feel like this. I don’t. This is not how I handle things any more. It has to be the steroids messing with me…it has to be….
But then…there has been so much loss lately…so much stress…and I found out yesterday that it is worse than I thought.
When you can’t hear very well…..let’s face it, I can’t hear at all without my cochlear implants on and working, and for a while now things haven’t been sounding right. So conversations with my husband have not been as communicative as they normally are. I have always been so proud of how our relationship has been so good, because we communicate so well. When you can’t talk a lot, communication seems to fail. He thinks I hear things I don’t. I think I hear things he said differently. And things simply do not get talked about. I’ve been feeling like we just talking much about stuff….and when we do, things just don’t get anywhere, we just get a bit frustrated because I don’t understand things….well…I really didn’t understand something, and I got really upset about it yesterday. I lost it, completely broke down, and I’m still spinning about it.
I thought our finances were doing ok. Not great of course. Tight. We do have a mortgage and rent and everything. But I thought we were ok, not in the negative ever month, being able to pay our bills…paying off credit cards….ect. We aren’t. We are still in trouble. I’ve been spending money recently. I’ve told Stuart when I was going to, or asked him….he didn’t say…”we really shouldn’t be spending”. No I haven’t gone crazy, but I’ve spent when I didn’t need to. We bought Christmas for our niece and nephew that could have cost half what it did. He said, “It’s what we would normally spend.” This makes no sense to me. I’m so distraught. He said….that in about a year we should turn the house over to the bank. What? and we can spend money on gifts??? I can buy things for me? NO. I knew we were in real trouble when Kiki started having diarrhea Friday night and Stuart said, “Oh Kiki please don’t get sick, we can’t afford it.” What? We discussed this before we got a dog. If we couldn’t afford a pet, we should not have gotten one. In my opinion, that is one of the worst things a person can do, and I know Stuart feels the same. (I know we would have found a way if Kiki would have needed to go to the veterinarian, but that comment really scared me.) We are in this situation because of me. We have not been able to sell the rest of the stuff out of the house, or get the house on the market because of me. No, the house may not have sold yet, but we are nowhere near even getting it ready. All because of me. I have gotten too sick for him to leave me alone to go to Durham and take care of things.
Now, how can I not feel guilt about being sick?? How can I not feel guilty for every doctor appointment I have? How can I not feel bad about every extra thing we have to spend because of my illnesses? How can I not feel bad about the trip we have to take to Duke….tomorrow?
We were talking about taking me to special clinics to look for more answers…..HOW could I even think of this??? I cannot allow my husband to lose everything for me. I cannot allow him to work so hard at his life and never be able to own another home, never be able to retire, never be able to do anything but take care of me! NO! I will die first. Please, please, let me die first. I simply cannot live with this guilt or with this lack of quality of life. How do you choose? How do you choose? Am I selfish and allow him to sacrifice everything for me, to help me…where it may end up there is no help, that I will end up just like this forever. Or do I stop it. and say enough. I accept that life will be like this.
I have ups. We’ve seen this, over and over. I have some good times. I had them not long ago. I went for over 4 months feeling so much better. Then I have times like this. Will I be like this forever, or will I have the good times again. Who knows. I cannot predict the future, and I have to stop making up the worst case scenario in my mind.
We have to get more stable financially before I can allow him to sacrifice any more. He does so much. He is so exhausted so much of the time. He doesn’t even see that it is because of me. At least he loves his job now. It is not draining him. He really enjoys it. I don’t worry about him so much there, but am I jeopardizing it? I hope not. Right now that is all I can do. I have to trust that his boss really is as understanding as he says he is. I have to believe. I know his hours are flexible….I hope they are as flexible as they are making them. He does a lot for me. They work around my appointments. Sometimes he leaves in a moments notice when I have an attack. He always gets in the hours, he gets his work done….he says that is all his boss is concerned about. But I am concerned. I do not want him to risk this job over me. (they did just put him in charge of a project, so they must believe in him, right?)
I have to be more involved in the finances and everything as often as I can. I have been hiding. I have not been able to handle the stress of it. I do not deal with instability.
I’m not dealing well with not being able to do anything. With not being able to help at all.
I’m simply not dealing well.
I do so wish we had some help. I wish someone would give us a maid for a day as a Christmas present. Or better yet, a maid service. We used to have one, got a great deal on Groupon, had a maid come in just once a month, and it was perfect. For this tiny place, I’m sure it wouldn’t cost much….well for some. But it would get the deep stuff done. Things that just don’t get done…..oh who am I kidding, a lot doesn’t get done lately. (I think that’s why Kiki got sick, she found something on the floor, I swear she’ll eat anything she finds!)
I’m tired. So tired. Between the spinning head and the aching back, sleep is hard. And now my brain will not shut off….I worry.
Please Please tell me I will be able to deal with this better again after I get off of these dang drugs! But then will the awful vertigo get worse again? I live like that either.
At a little after 6am Stuart was leaving for work and I woke up and decided to eat a little something and take my first steroid of the day.
I woke at 8am with my stomach hurting…ugh, steroids. Then I thought, “Oh good, it is better today, knock on wood”…and I really did! I took an antacid for my stomach and went back to sleep.
I woke up at 10am with horrible heartburn and spinning. sometimes you just want to cuss!
I thought, ok….slow. I can handle slow. I hope. I took meds and slowly, very slowly started to get up. Ah…let’s just lie here for a minute.
Try again….slow. VERY SLOW…. I feel like I’m walking on a merry-go-round, and it’s on a rocking boat….ugh…my stomach takes a lurch…it’s ok, just stop here for a second. Grab my walker….oh nice walker, I love you so much. slowly I get up…I am sure no one has ever seen anyone move so slowly. Once I am up, well kind of up, I am hunched over the walker with my head leaning to one side, I am doing pretty good. I start to head to the bathroom. WAIT…phone! I grab my phone, just in case. If I fall, I need to make sure I can get help. and off to the bathroom. I DID IT! I got to the bathroom ALONE! During vertigo! it was a very slow spin but I did it!!
I did it 4 times today!!! I have been slowly spinning all day!!! If I keep my head exactly still things are pretty still, but if I move, WHOOSH!
This morning I was very proud of myself. Not only did I get to the bathroom alone, I got in the kitchen, grabbed a banana, a couple of pancakes that were in the fridge and got back to the bedroom…got my CI’s….and things I’d need for the day (meds and such) and go myself to the couch. Once I went from the standing position I was in to sitting the vertigo went WILD! What on earth? who knows this is the most bizarre thing in the world, no rhyme or reason to me!
So I collapsed and tried to calm down…and hung on! Whew!
It slowed, and I was ok, but not great by any stretch of the imagination.
It’s about 11am by now. Stuart had an appointment this morning and texted to check on me. I told him I was spinning but I handled it, however, if he could stop by on his way back to work and help me get settled it would be great. So he did….and I sent him on his way! Even though I was not doing well when he left. It is now almost 4pm and I have done a good job of handling things today.
I’m proud of me.
I still want to share with you guys just how I got through some of the roughest parts this past month, and everything that went on in my head, and heart. Things I didn’t want to admit to. I was ashamed to admit I wasn’t handling things as well as I thought I would. But I got through it, and learned a lot along the way. Of course, I’m still going through it….so…we’ll get there.
One thing that really helped me get through all of this…..
So I feel bad about it…feel bad. That’s OK. Acknowledge it. Don’t feel so guilty about it. I don’t have to feel positive all the time. My positive go to attitude is still there, but it is perfectly fine to feel bad about this, to feel sad, angry, and well….just bad. I’m not going to wallow in it, I’m not going to get stuck in it, so I don’t need to beat myself up over it either. Accept it, and have some self compassion.
Things I should note today…. woke feeling better around 8am. Woke with vertigo at 10am. Had rotational vertigo all day, various degrees of spinning speed. Right side of face/head felt funny. (by this I mean, it feels thick). Had a migraine. Took a Maxalt, pain got better, but side of head sensation did not go away. *could some of the vertigo be migraine related? Ears feel full, but not as full as they have over the past few weeks. When I drink I can really feel the coolness in my right ear, it actually feels like water gets in my ear. there is not water in there if I feel in there, but it feels very strange. am I just noticing this because I’m hyper aware now?
I love the sentiment behind Thanksgiving. Take the time to be thankful for what you have.
Then I look around. Is that really what I see? There is so much talk of spending time with family and friends and eating and …and…and Well what is a person to do who has no one, or who has very little? I have very strained family relations. I am never invited to any family function. This can be very hard. Some years it hurts more than others. This year I became very melancholy about family, I’m sure it is because I have been so sick and the steroids have been turning up my emotions a bit, but seeing all the stress on how we should be with family and how things “should be” started to make me feel even sadder about it all. (Don’t worry, all is good with me.) If that could happen to me imagine what it could do to someone who is really depressed? Someone who has no one?
I remember those times. I have spent Thanksgiving and Christmas, alone. On occasion I was invited to friend’s for dinner, sometimes they were fun, other times they were miserable. If you reach out to someone and invite them over for a holiday meal, please try to include them in your festivities, not just feed them. I have never been more miserable than when I went to a holiday meal and felt I was a charity case. Sitting in a corner alone watching people have fun is worse than sitting alone by yourself knowing people somewhere out there are having fun. I’m not saying, don’t reach out and invite someone over….please do! But include them in your festivities. Do not have family gift exchange in front of someone who is alone for the holidays. Do not do your yearly family traditional …. whatever….and not include this person. Do something that includes this person. Make them feel welcome and special. Make them feel you are Thankful they are there. If you have a special family tradition that you cannot include this person in, then invite them to come later, or have the tradition after they leave, or find a way to somehow include them. Some people may not have a hard time with this kind of thing, but I did. It was torture to see a happy family doing things that a family does knowing my family didn’t want me with them. That is not to say I was not grateful to everyone who had me over for a holiday meal, I was. I have been to some homes where I didn’t want to leave I felt so welcome and included. (little hint, if you have someone over….get them involved. Treat them the same as you would anyone else. I loved it when I was put to work, or was told to help with the kids, was taken aside by grandma and told story after story….when I was treated like family, that was the best.)
It’s also that time of year when I see so much food everywhere! I hear people talking of family and friends and togetherness and FOOD!
I’m amazed at how much food is wasted in this country, yet so many people go hungry. There is no reason for anyone in this country to go to bed hungry. There are so many things wrong with this I just don’t know where I would begin to talk about it here. Not today.
Today I want to just say, when you are planning your Thanksgiving meal, think about the people who don’t have one. When you go to the grocery store and you see that box that at the entrance where you can donate to the local food bank, please put something in there. People are using the food bank more and more these days. The place to go when you are in dire need is overwhelmed with people in need. Every time you go to the store, please put something in that box. If you can donate to the food bank, even better, then they can buy fresh food to give out. This is very important, even when the needy are getting something to eat it is often so far below nutritional standards they are so malnourished they are getting sick and often still starving. Most of the hungry are children and elderly. 1 in 5 people in the United States are hungry. When you are wearing your elastic pants this Thanksgiving so you can eat too much, remember there are people who don’t have enough….some who don’t have any. Remember, they won’t have enough the next day either, so continue to give. Project Sunlight is a great place to get ideas on more ways you can help. At Feeding America you can find more about hunger in America and you can find your local food bank and see what they are doing in your area.
Remember, after Thanksgiving people will still need food. We often give more to make sure people have this wonderful meal on this day, but then they go hungry again a few days later. This year won’t you say thank you for your bounty by sharing a little throughout the year.
Now…for a few things I’m very thankful for this year….
I cannot say how thankful I am for my husband, without whom I do not know how I would manage to navigate this world.
After 15 months without a job, my husband found work. Not just a job, but one he enjoys!
this moment is good. (it has been quite a ride of ups and downs this past month, the past 2 days have been better…one moment at a time…accept and make the most of it.)
I had nearly 5 months of feeling so much better than I thought was possible.
for learning more and more about living more mindful
for learning to be less judgmental of myself and others.
for having a roof over my head, heat when it is cold, food when I am hungry, water when I am thirsty…
for feeling safe.
for having at least one friend I say anything to and know it will be OK.
for a very special email I received the other night that helped more than the sender could ever possibly know.
for learning how to forgive, and knowing that forgetting isn’t as easy.
for remembering again and again….I can do this….one moment at a time.
There is so much more I can’t even think right now….actually…I can’t really think right now. Unfortunately, I’m getting a bad headache…ah the joys of weather change.
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.
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.
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
Trying to hold on to the good days, thinking life will stay that way forever is fruitless. It will change. And it has.
My hip flare up, that was just this little thing, that was supposed to calm down after the cortisone injection….has become a complicated mess.
I had my hip injection on September 11th. We got Kiki that evening. It was an exciting day. I expected to be sore that night. I expected to possibly be sore the next day, but would probably feel better….and continue to get better. That didn’t happen.
I’m not sure if the shot did anything. I don’t think so. However. on the night of September the 12th, I got up and went to the bathroom. I started to sit on the toilet and lost my footing and fell, hard, onto the seat. My elbow hit the back of the toilet where I keep a box with things in it and I got a nice little scrape on it. The big hurt was my hip. OW! The pain shot through me, from the top of my buttock, along my side down through my knee….I was in PAIN! I have been in constant pain in this areas since that night. The pain ebbs and flows, but never gets better than a 6, and if often hovering around an 8. I had Stuart give me a Toradol injection. This really helped. Toradol is a nonsteroidal anti-inflammatory drug. (I can’t take NSAIDs by mouth because they tear up my stomach, but I can have these injections occasionally.) Since this worked to take most of the pain away I was sure I hadn’t broken anything. I was also hoping the cortisone shot would kick in and help. So I waited….
The cortisone didn’t help. I went back to the doctor on the 18th. She was disheartened. She suspects that my pain may be coming from my spine, and maybe also from my hip. She set up a CT scan with contrast dye, and she wants me to see a spine specialist, and a more specialized hip doctor. (she is actually a PA in the office, she wants me to see a specific doctor in the practice). I will have the CT scan on Friday. (I was originally supposed to have the CT scan today, but I didn’t sleep at all last night and I can’t control the Meniere’s vertigo today, and since I could get in closer to my doctor’s appointment I decided to change the appointment.) I see the hip specialist on October 1st, and I’m not sure when I see the spine doctor yet, I haven’t heard from their office yet.
How am I handling all of this? Some days very well. Some days not well at all.
I have had a hard time not getting really stressed out about this. I’ve been creating “what if” stories in my head. My mother started having back problems in her 50’s and it really changed her life. She died of lung cancer when she was 64, but I’ve never been convinced it really didn’t start in her back. There are many reasons I believe this, I won’t get into them here. What if I have to live with this pain forever?…….See the stories I have been spinning in my mind….this is not a good thing. This is not a mindful thing to do. It does NOT make things better. It makes it worse. The stress builds, and everything spirals out of control. When I think like this I can feel the depression creeping up over me. It is oppressive.
Then I try to be more mindful. Being mindful is hard. It isn’t something you can just click on with a switch and suddenly you think mindfully all the time…I wish I could, I think I would handle things better. I’m trying. First, I am trying hard to stay present. I cannot change what we are going to find out, but I sure don’t have to make up all these horrible scenarios. I could have something easily fixable. If I have something that is more difficult to deal with, I’ll deal with it. Either way, I don’t have any idea, so stop speculating. Keep my mind in the present, right here, right now. That is the least stressful thing I can do.
I also got so stressed because we got this precious little dog, Kiki, to take care of and suddenly I can’t take care of her. I can’t even feed her. I can’t take her out. I can’t care for her at all. Stuart would not have signed up for this had he known he would have been the sole caregiver for me, Max, and now Kiki. We would not have adopted Kiki at this time. Does he regret it? No. But would he have done it? No. So I have been having that emotion that simply doesn’t help…..guilt. I have put more work on him, and I feel guilty because I can’t take Kiki on long walks and to the dog park and do things I feel she needs. I can’t focus time on training her. I feel guilt. Ugh! useless!
Not sure how that is handled in mindfulness, but I know for me, I need to channel that into something constructive I can do. Haven’t figured all of that out exactly, but I will. Yes, this is not how I planned for things to go, so I need to change my plans. I have been playing with Kiki more indoors as much as possible. She will bring me a toy and I will throw it. She brings it back and drops it in my hand. (how cute it that?) I have taught her to sit before I’ll throw it again. (really, she was already doing that most of the time.) I will hide it and have her find it. (I think this is a newer thing for her!) So we are working on some training. It’s just different from I planned.
Then I go back again to how I feel about my body, and what is happening. My Meniere’s is acting up big time! I always tell myself to stop trying to figure out why, it used to drive me crazy, and I would end up blaming myself for my attacks, but this is pretty obvious. The pain will not allow me to sleep or rest enough. I can’t relax. Also, it is Rag Weed season. I think I’m handling the rag weed pretty good, but I can’t keep up with the exhaustion. My hearing is going up and down; yesterday if I was blind folded I would have sworn a jet engine was in my living room. When the noise started I kept asking Stuart, “what is that noise?” He looked at me funny. I said, “You don’t hear it do you?” I realized it was just me…dang. Then it got louder and louder and louder….and it lasted for over 2 hours at the loudest point. I’ve never had that happen before. I’ve had very loud tinnitus, but I’ve never had that it that loud for that long. It continued to be loud for the whole night but it did dial down a bit.
I hate to say it but, I’m just one big vertigo attack. I try to control them but that is exhausting too. Most of the time I’m spinning at least a little bit. I have been able to control it enough that I haven’t had full-blown… spinning so out of control that I can’t see what is in front of me… vertigo, but this constant boat feeling and everything waving is driving me crazy! I keep focusing on my breath…grateful I am still breathing. Then I laugh…they say breathe, take a deep breath..ect. It’s not like we are going to stop breathing. It is something we do. Do you ever really focus on your breath? Really think about it? If you have ever gotten choked and couldn’t breathe I’m sure you did then, but normally we just take it for granted, like we do our heartbeat, and how our brain works, or the fact that we blink…ect. So,right now suddenly I’m thinking about my breath, not just the in and out, but the actual breath. How it works. I have pulmonary problems so I don’t take my breathing for granted all the time, and I know a lot about how my lungs work….so I think about it, and really I’m thinking about how the oxygen goes through my body, how it nourishes my whole body, how my breath goes through all of me, down through my toes even. and suddenly I just realized….just now as I am writing this that I have calmed down and feel more in tuned to this body and it is just fine. It is working pretty darn good. It’s my body. I like it. I love me. I’m at peace with it. I accept it the way it is.
Now that is mindfulness. That is what paying attention to your breath is supposed to be…..wow. I feel better, right now. I know this isn’t easy. I’ll be working on being mindful forever.
It’s time to take a little time to notice some of the things I’m grateful for…before I completely meltdown (again)…I know this will help!
This move has been extremely challenging, mentally and physically. I am very grateful that I (and I am serious here) am not curled up in a corner crying and trying to hide from the world. I’m also grateful that I am still able to get out of bed and accomplish some things. Yes, I am in a lot of pain but, I’m still doing much more than I have in years. I am so VERY GRATEFUL for this. I told Stuart last night, I just can’t believe I started feeling better (no not well, but a bit better) right before all of this happened. Wow! If I was still like I was just a few months ago now. This move would have been…..uh, well I just don’t want to think about it.
I’m grateful I sold almost all of my fused glass supplies. I have only 2 things left and they should be very easy to sell! Because of this we didn’t have to move any of that! Yay!!! Also, because of this I was able to buy our living room furniture. This made me feel so good. I was able to contribute to the household. This is the first time I have been able to do this in YEARS! (We had to by new living room furniture because the furniture from out old place was too big.) This is a loan to the house though, as soon as we can pay it back that money goes in my service dog fund.)
I’m very grateful that I met the nicest lady when I sold my fused glass supplies and she actually sold my kiln for me! How cool is that?
I’m grateful that our new place has a beautiful backyard.
I’m grateful that we live within walking distance to a grocery store and other little shops. I hope it really is within MY walking distance. If not now, soon.
I’m grateful there is a park nearby.
I’m grateful Stuart works very close.
I’m grateful we found a restaurant that will make meals that meet my food requirements, and it isn’t far away. Plus, the very first time we went we got the best waitress, she is the bomb! We’ve been there one more time and asked for her, she remembered what I needed and helped me order! Wow!
I’m very grateful I’m still losing weight. It feels so good to be getting in to smaller clothes and seeing a smaller face in the mirror. I’m grateful that the diet is making me feel so much better! What you eat really can make such a HUGE difference in how you feel!
I’m grateful I have the coolest cousin in the world living close by! Can’t wait to see him and his brood this week! And it’s so nice we can call on each other! He’s real family! If your reading this, I love you man!!!
I’m grateful things are coming together……wait, did I just say that? do I believe it? Am I just saying it or do I believe it? hmmm, let me think. (Jeopardy them playing in my head…) I’m not sure. One thing will happen and it looks like things are flowing along then one thing will happen and things just start going backward…but I know things will end up…the way it’s supposed to be, after all how else could it be?
And yes, I do mean that.
I’m grateful I wrote this post, because I needed it. I needed to remind myself that things are going happen. They are going to be the way they are, no matter what. I keep trying to bend things the way I want them, I keep fighting to make things happen faster than they are going to, and well, I needed to remind myself…..it’s going to happen, or it’s not, and that’s OK.
Yesterday is gone, I can’t worry about what happened, tomorrow isn’t here yet can’t do anything about it. So today I’ll do what I can, and that’s it, if something comes up and makes it so things get in the way I’m going to go with the flow and not get all out of sorts. Just breathe. It will get done, or it won’t, maybe it wasn’t meant to be. I’m so very grateful I realize that.
Today’s meltdown averted…..maybe I should have written this yesterday.
I haven’t been posting on a very regular basis because I’ve been having daily vertigo. Sometimes it’s a short bout of spinning that I can handle pretty well, other times it has been the horrific bouts that cause me to throw up for hours, and lose all bodily functions. (I know you’ve heard the details before, I’m sorry for the graphic description)
Daily vertigo is so draining. The constant disequilibrium is one thing, but the vertigo…it’s the most debilitating thing that has ever happened to me. To have this just hit me out of the blue, leaves me with such fear. This past week I’ve woken up with vertigo at least 3 times. One time I was on the verge of throwing up, and I admit, I completely freaked out. That bothers me so much. I have been keeping my cool through the attacks, but then that happened, and I’m terrified. How can I feel comfortable ever leaving the house when I know that daily I have these attacks?
We can’t be sure if the vertigo is being caused solely from Meniere’s, I also get vertigo from the Idiopathic Intracranial Hypertension (IIH), and Migraines. I saw my otologist (ear doc) yesterday and told him everything that has been going on…..he was so distraught. There was another doctor in the room with him from Turkey, and both agreed, there is nothing that can be done.
Some people have said I could kill the balance nerves, but that is not an option for me. For a number of reasons. At my age, it’s almost impossible to learn to balance with just your eyes…and when they say that you balance with your “just” eyes that’s not really right, you use the balancing nature of your muscles, bones, ect. It’s easier to do this at a young age, children can often overcome the loss of balance from the ears. But this 50 year old woman who has been using her ears to help balance for her whole life, and who has trouble with her hips and pelvis so her gait is off, well I would almost definitely end up bed bound having vertigo constantly. I’ve never been so overcome with emotion. I just cried, I had a very hard time composing myself. My doctor looked so tortured and kept saying he was sorry. I told him he didn’t cause my ears to be like this, but I know he wants to help. It hurt him so much to tell me he just couldn’t help. He told me if he finds out anything that might help he will call me immediately. I know how much he cares, and it pains me that my illnesses has made him feel useless.
I feel odd today. I’ve felt so defeated and depressed lately. It’s simple, I just didn’t feel I could continue to exist like this. When you feel your life is only just existing, and that existence is completely miserable, then why are you existing at all.
Today, after learning there really isn’t anything medical that can be done, I actually feel like a weight has been a bit lifted. I know I have to deal with this, I can’t just keep thinking that there must be something that can be done. I’ve come such a long way in dealing with my vertigo attacks. Often, I can stop them from getting to the most horrific stage. It’s difficult, and it’s challenging, but it’s helpful. I’m still stuck being very still, not allowing myself to look beyond an article just in front of me (if I focus further away I will spin harder), trying to stay calm, taking deep breaths, and telling myself over and over that it IS NOT REAL. Of course, getting the meds in me as fast as possible has helped a lot too. So now I know what I have to deal with.
I know stress is making things worse and my normal exercises that I have come to rely on to reduce stress is not working, so I have to do some research and try something new. I’m thinking about hypnosis, after we have income coming in. I have a focus now….what can I do to reduce my stress? The stress of:
my husband being out of work since April 2013, and me not being able to work.
having my disability denied and now that we are in the appeal process they are saying it will take over a year before my case will even be heard.
my father just started treatment for liver cancer
the continued asthmatic symptoms without being able to get much relief.
an increase of migraines….is Botox no longer working, or are the migraines being caused by the IIH
an increase of IIH symptoms
breaking my foot
not feeling stable at all. Not knowing where we may end up, not knowing what is going to happen…this is not good for me. I do not do well when I feel like my life is up in the air.
not being able to be intimate with my husband…and yes, even with everything that is going on with me, I would like that part of my life back.
……….that’s enough to list isn’t it? yet, yes I can think of more. (Deep Breath!! In…Out…repeat) OK, that’s a little better.
How do you handle stress? Any suggestions. I’ve done a couple of things, but more needs to be done. My stomach hurts all the time….this cycle has to be broken.