I broke down and sobbed at the ear doctor’s office yesterday. I actually left there sobbing…in the elevator, out the door, in the parking lot…had to stop in the parking lot and catch my breath because of the sobs…then into the car…….
I could not believe what I had just heard!
Not from the doctor, that hurt but I wasn’t surprised. He mainly said, I had to live with it. I didn’t realize I was hoping for more until he said it. but I was crushed. I was about to cry then. But I held it together, I knew I would cry later, but just a little…a little mourning once again. Knowing that I may live with this constant vertigo forever. The fact that my worst feat was coming true….well just a little. It isn’t fast vertigo, that is my worst fear. I will not build up that fear. After all I may not live with this forever. I do not know the future! but the wound was open, and it was raw….I was acknowledging these feelings…it hurt.
Then we went to set up an appointment with the Cochlear Implant audiologist. Thank goodness, I really need my CI’s adjusted. When ever I have a Meniere’s attack my hearing goes wonky. They refused to see me!!!!! What The *%&^??
First the doctor had said that they didn’t see people who went from Charlotte to Duke to have their Cochlear Implant surgery because they do the surgery there. OK? well that makes sense I guess….still that is not right. So you choose to have your surgery somewhere else, then we will not help you after your surgery. They want to people to have their surgery there that badly?
But he said, since I lived there and moved here, maybe it would be OK. So they went to set it up….NOPE.
Then they came back saying it is their policy not to take transfers from anywhere in NC. What? Charlotte is on the far side of NC. NC is a VERY long state. If someone moved here from the far side of NC they couldn’t get their CI’s adjusted here? That is like 10 hours away. What? That is just messed up. What if my surgery had been done poorly and I needed help? Oh I’m sure they would help me then, that would be surgery. This is just seeing the cochlear implant audiologist. I still don’t understand. They get paid for this. It’s not like it is free. The appointment last for 1 1/2 to 2 hours. It’s expensive. Frankly it feels like discrimination. You are one of those people from Duke, we don’t like your kind here. I am just floored.
So, they say I will have to ride 3 hours to Duke to get my CI’s adjusted. Yes, that is just torture for someone with vertigo!! Then to have the CI adjustment is very hard on me. It always makes me sick and I get a migraine. Then I will have to endure the ride home…another 3 hours. (of course if I have vertigo really bad it will take us much longer, we may even have to stay the night somewhere.) Ugh!
I am at a loss.
There is no other CI clinic in this city.
Right now we are making an appointment at Duke. I can’t see me actually going to this place after this anyway. How could I trust my care to them?
I’m complaining to the manufacturer who makes my CI’s because I was told by them I could get my adjustments done there. I’m sure they have no idea that this place is refusing patients who have Advanced Bionics Cochlear Implants. (or any other implant from another clinic)
I am really beside myself and this is starting me to spiral out of control.
I am going down…down…down…
I am working hard not to let it.
I am tired of feeling that everything is out of my control.
I can’t even make calls about this.
I want to call that audiology department and find out why this is a policy and see if they understand my situation. I feel this is malpractice, but according to the Audiology society where I could file a complaint it isn’t. It is their business practice rules and that isn’t considered something I can lodge a complaint against. It is discrimination! I am being discriminated against because of where I had my surgery.
I just can’t believe this.
Normally I would never think of going there after this.
I would want to make them pay, but I wouldn’t let them touch me.
but I don’t want to go so far away every time I need to be seen.
*sigh*
I don’t have a choice.
I can’t do anything, and let’s face it, Stuart is not good at these things….and this stupid office had no way for a deaf person to get in touch with them!!!!
I can’t email them!
I’m not good on a computerized caption phone. There is always such a delay, and there is always words that are translated so wrong. I gave up.
I want to scream. guess I could since our neighbor moved this past weekend. LOL
OK….
I’ve vented enough.
That’s my predicament
on which I will lament.
Wanting to take care of me
but have to depend on he.
How do I reconcile myself to this half-life?
or do I continue to wrestle with this internal strife?
Many of life’s offerings I willingly accept,
but loss of all control, I’m not so adept.
This is today, I can’t predict tomorrow.
let me, wipe away these tears, let go of the sorrow.
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 admit I had not heard of Blog Action Day until yesterday. I left a comment on fellow blogger Kitt O’Malley’s blog and she told me that it was worthy of a post for this year’s theme Inequality. Kitt is an amazing mental health advocate, please go and check out her blog. Kitt O’Malley – Living with Bipolar. Loved by God.
Inequality and Access to Mental Health Care
Sometimes you need help. You may or may not want it. You are a risk to yourself or others. A stay in a psychiatric facility is needed. The care you receive will vary drastically depending on your financial means.
This is my story…..a 30 something white woman, with not the best insurance, with no savings, and no other financial support….
I was involuntarily committed to a psychiatric facility, I was suicidal. I had called a Suicide Help Line and was talked into coming in to a mental health facility to “talk”. They wouldn’t let me leave. I was taken from there to the psychiatric hospital in the back of a police car. It was scary. Really I wanted to be committed, I was afraid of what might happen, but officially it was involuntary. My insurance would only pay for inpatient treatment if it was listed as involuntary. However, once I got in, I wasn’t told my rights.
I wasn’t treated badly. I actually had a good stay for the most part. There were no windows my room. The view from my window in the main room was through a thick metal screen, it was more like a prison. But it was a nice atmosphere for the most part, and it was clean and the people were good and they had really good food!! It was surprising to me how much the patients were supportive of each other. There were times when you would hear screaming and there were times when everyone was rushed into their rooms and closed in….but for the most part, it was a quiet and restful stay. This hospital had separate wards depending on the seriousness of the illnesses. This is not always the case.
My biggest problem was the psychiatrist they made me see. He made me very uncomfortable. I was a rape victim and he gave me the creeps. He insisted on being in the room alone with me. I complained and complained and I couldn’t get this resolved. He said I had Borderline Personality Disorder and my complaints were part of my disorder. (I had already been diagnosed as being Bipolar. This diagnosis was again confirmed by a different psychiatrist.)
My second problem was I was told I needed to stay beyond the time my insurance normally pays and that they had gotten approval from my insurance company for the extended stay. They didn’t do that. Since they didn’t get that, my insurance didn’t want to pay for the rest of my stay. Well I had no way to leave. They wouldn’t let me. Plus, I didn’t know they didn’t get approval for the rest of the stay. I left there with a HUGE bill.
This stay ended up making me almost declare bankruptcy. did it help me mentally? Yes. Mainly because it got me in the system and I was able to continue treatment.
I did end up not having to pay for the psychiatrist outrageous bill he tried to saddle me with because of the complaints I had made against him and the many request to have him removed from my case. I also had most of the bill from the hospital dropped because they didn’t get it authorized, and since I was involuntarily committed I couldn’t be held legally obligated to the papers I signed when I was admitted. I wasn’t of “sound mind”.
However, I lost my job. I couldn’t pay my bills when I got out. I was single and alone. My roommate stole from me when I was in the hospital. I had no one to help me. If I hadn’t been so determined to get better, and stay the course, I would easily have stopped taking my medications….I had a hard time affording them. I would have stopped going to therapy and to a psych doc….again it was very had to pay for it. However, I wanted to be more normal. A lot of Bipolar people really miss the highs…I did. I’m an artist, and I will say, I feel I creating has been a lot harder than it was before. But I will not jeopardize my health.
These are trials I had and I was really there because I wanted to be. I didn’t have an advocate. I wish I had. There were a lot of things going on with my case that no one told me about.
If I had not been so eager to want to get better, I don’t know if I could have done it.
The system is so very far from perfect!
I worked so hard. I still work hard at it.
many people who are involuntarily committed won’t be committed to working at it.
Many people who need help and want it won’t even be able to get in a hospital because they don’t have the funds.
No one should feel they have to declare bankruptcy because they need help with their mental health. My credit was ruined for years after this hospital stay. I was afraid to answer the phone because of bill collectors. Yes, I was able to finally get the bills straight with the hospital, but it put me in such financial straits with everything else it followed me for years. My employer didn’t hold my job for me. So when I got out of the hospital, I had no job, and a whole lot of bills. I was still in a very fragile state of mind. This is not the ideal way to enter back in society after leaving a psychiatric facility.
Can you see the Inequality in the Mental Health Care system?
Can you see how different it would have been for me if I had the financial means to pay for a higher quality facility, and have an advocate help me?
Can you see how different it would have been for me if I had not had the financial means I had? If I hadn’t had insurance? I easily could have either have been ignored, or put in a state hospital. I could have been put in a ward with people who were very dangerous. I could have gotten lost in the system. These kind of things happen every day.
What can we do to stop the Inequality in the Mental Health Care System?
The first thing we can do is talk about it.
Talk about it more….and more….perhaps the more we talk about it the more attention we call to it.
The more attention we call to it….the more noise we make about it…they will have to do something about it!
How? What? I don’t know. I don’t know how to fix it. I wish I did.
But I do know this is an inequality that must end! People cannot continue to suffer because they can’t afford mental health care.
There are days when you have a hard time. Days when you can’t think of anything but what is going wrong. It’s on those days that I find it most important to step back and look around me at the things I’m grateful for.
Today is a day I want to really look around and pay attention to what is in front of me, I know I have so much to be grateful for!
I’m grateful I woke up today. What? You think I’m joking? I thought I’d start at the beginning of my day, and I thought what is the first think I’m grateful for today? I’m grateful I’m here. I’m grateful that I’m alive. I’m grateful I can breathe. Oh there is a good one! Last night I had a very difficult time breathing, I coughed and coughed, and had a hard time taking a deep breath. I had used my inhaler and it didn’t seem to do anything. I did a nebulizer treatment, and I could breathe better, but of course I had the shakes for a long time afterward (I really hate that thing, a necessary evil). Then I started coughing again, and well, it was a not so great breathing night. Just one of those nights for me. I did sleep without much coughing, so that is great! We’re working on getting the chronic bronchitis under control, but haven’t gotten there yet. I’m not complaining. Last night was a rougher night than usual, the weather changed….rainy, damp…that makes it worse. Again, not complaining, just stating the facts. I accept it as it is, and I am fine with it. I will be going to a new pulmonologist soon and we will work at getting this more under control. I am very grateful that I can breathe better today.
I’m grateful my husband can walk our new dog every morning, and she is so good about it! When we first talked about getting another dog Stuart said he didn’t want to have to walk it. Then we met Kiki, and knew she was the right dog. I was having hip problems, but thought it was going to be over very soon. The doctors thought it was just a little inflammation, I was scheduled to get a hip injection and they thought that would be the end of it. So when we decided to start fostering Kiki, I had planned to be the major caregiver. Little did we know I would fall the night after my injection causing me to have a herniated disc in my back, and now a month later, I’m still not walking Kiki. I’m still not walking much at all. However, Kiki is the best dog about taking walks. If you are in a hurry, she will go very fast. She isn’t the kind of dog who will just go out and sniff and sniff just for the sake of it. If you go out and walk out to the tree and then walk back toward the house, she will go. No problem. Often, in the mornings she will run Stuart outside, go real fast, and run back in and go back to bed! She says….”Bye Dad! I’m ready to go back to sleep!” He has even said that he likes taking her for walks! I’m a little envious. I’m very grateful they have bonded and the walking issue, never became an issue!
I’m very grateful my doctor thinks my herniated disc will heal with just a little physical therapy. Yep, right now I’m bored out of my mind. I’m so tired of not being able to do anything. I can’t walk far without pain, I keep waking up because of pain, I can’t sit long without pain, well it just hurts. I’m so relieved that the spine specialist thinks that I will heal with very conservative treatment! Yay!! I’ll happy dance when I can!!
I’m grateful I didn’t gain weight while taking steroids. Oh boy, oh boy can we get happy about this one?! The steroids made me go out of my mind, I was climbing the walls and wanted to destroy people, but I didn’t gain weight! I didn’t weigh myself for the past month, it was too hard to try to step on the scales, I finally weighed this past week. I lost 4 pounds! For inquiring minds….that is a total of 44 pounds lost so far!!
I’m grateful I understand I can’t trust my emotions right now because of the steroids. I was actually very proud of myself for my self control and for understanding that it was the steroids that were making me feel so horrible. They are still nagging at me a bit, I have one more dose, but you know it will take a little while before they are out of my system….so I can’t trust my emotions. That is a good thing to keep in mind. It is very difficult for someone who is bipolar to feel this way. I am always very on top of my emotions, very in tuned to how I’m feeling. I have to be. If I start noticing that my feelings are our of sync with how they should be, I need to talk to my doctor. By this I mean, I need to watch out if react to something in an inappropriate way. For instance, the other day, I said to Stuart, “Why don’t you use your damn common sense once in a while?!?” in reaction to him just asking me a simple question. This was VERY inappropiate! I do not talk to him that way, and I couldn’t calm down. I was sitting there suddenly saying….”I don’t act like this any more! I don’t feel like this anymore!” I took some deep breaths, centered myself, and calmed down. Apologized over and over to my dear husband and explained I couldn’t help it and it would probably happen again. I was full of anger I couldn’t control and he was probably going to get the brunt of it. He was a dear sweet love and hugged me and understood. Yes, he did get it a couple of other times, nothing like that time, and we dealt with it very well because we talked about it and how the medication was affecting me. I’m so grateful I have a husband that communicates with me and understands about uncontrollable emotions due to steroids.
I’m grateful for a small place to live. I’m grateful for a place to live that is safe. I’m grateful for a place to live that is peaceful. I’m grateful for our place. I have been a little ungrateful for out little place lately, and just now I realized just how very grateful I am for this place. I really do love this little place in many ways. I love that it is small. I am very grateful I do not have to climb stairs right now. I couldn’t. It is so much easier for me to get around this little place. I have been feeling a bit claustrophobic in here lately, and way too isolated. I know it’s because I just can’t do anything. My mind wants to do something and my body says NO. (yeah I’m working on that) I’m very grateful that of all the places we looked at to rent we found this peaceful little place. It is quiet here, (yes that is so important to a deaf person…haha). There is little traffic on the street. There are more people out walking their dogs in my neighborhood than there their are cars that pass by! I just think that is so cool! Yes, as I write this little piece I’m much more grateful about the place I live.
I’m grateful Kiki loves her new toy so much! Yes it is the little things that bring joy into our lives! Kiki loves her little toy so much! She has forsaken all of her other toys for the one she picked out at the pet store. It is a little beaver…I think. It has a recycled bottle inside so it crunches, and it has a squeaky toy in the tail. She loves this thing so much! She carries it around, and gets so excited. She will chase it, she will play hide and seek with it, she will run and get it and bring it to you just to show it to you…..”Look! LOOK! SEE! my toy!!!!” She takes it to bed with her. She doesn’t play with it in bed, no she just has to have it with her. If I’m in a different room she will go check on me then she will go and get her toy and bring it to the door and show it to me….like she is showing the toy where I am?? Then she will leave. She has so much fun with her toy, and it brings me much joy playing with her with it, and just watching her with this toy! I will never get tired of watching her play!
I’m grateful my husband took me out yesterday for a short trip to the mall and I found a bra that fit – First Try On!!! don’t really need to follow up on that one….but I will! I must say, this is the very first time this has happened, and it is amazing to me. After losing so much weight I went in and completely guessed my size! I was not up to trying on a lot, this bra was on mega sale and I thought, OK, I’ll try it. I had on an old bra that was too small, so I adjusted the size from it….and Wow! I’m still amazed that it fit, and it just looks and feels so great. No gaps, no pinching, no pulling…..I’m a happy woman! It was also on such a mega sale I won’t feel bad if when I lose more weight and soon need a different size! One thing that is a little different about me losing weight….I have bigger boobs. I’ve always liked my breast. I have felt they were just the right size, not too big, not too small…just right. When I gain weight, they have always stayed pretty much the same. They didn’t get really big with me. (a lot of women gain a lot there, I didn’t.) Yes I’m silly, but just thinking about it, if things keep going as they are I’m going to be a bit bigger. Right now I’m a cup size bigger than I normally am at this band size. Stuart likes it. hahaha However, I can’t imagine him not liking anything about my body….he is a bit biased. and I’m very grateful for that!
oh there is so much to be grateful for!! I’m feeling so much better than I was when I started this post! I’m grateful I have so much to be grateful for...here’s a few more….
I’m grateful I got to tell my sister how I was feeling about some things. It doesn’t matter if things don’t change, I’m just so grateful that we talked and I know she knows some things now that were stuck in my head and I needed to let it out. It’s hard to put some things in the past if you don’t know if other people have put it there, or heck, if they even know about it. Yeah, try to wrap your head around that one. I just feel better about things. I’m grateful for that.
I’m grateful that I’m emotional. (no one needs to understand that one. It just really used to bother me, now, I’m glad. I like having deep feelings. It may hurt a lot sometimes, but it is also pretty darn great other times. Being “emotional” is not a bad thing.)
I’m grateful I found this meditation on forgiveness….I needed it….Forgiveness Meditation(this is just a written page, not a link to a guided meditation, read if you want. I liked it a lot.)
I’m grateful I have some friends I can reach out to, even if I don’t have any I can see in person.
I’m grateful I have clean water. (I really don’t like the water from our tap here, we have started using bottled water, and I’m so grateful for it. It really makes me think a lot about people who can’t get clean water at all. I’m so very grateful that not only do I have running water in my home, but I am able to get wonderfully clean water whenever I want it.
I’m grateful I have access to fresh food. Something else I have thought about a lot lately. I have talked a lot about the change in my diet, how I’ve lost so much weight and how much healthier I am because of my new eating habits. I haven’t mentioned some of the other things I’ve noticed that I can only attribute to my diet change. My hair is thicker. My fingernails smoother and less brittle. My skin is clearer. I can tell you I haven’t changed my hair products, nor have I done anything different to my nails, so I can only attribute those changes to my diet. I did change my facial wash, but I will admit I don’t use it every day. I am a self proclaimed foodie. I love good food. I love fresh food. I’m grateful that even though we have had very lean times over the past couple of years, we have always managed to eat as fresh as possible. We have cut corners every where we could so we could spend a little more on our groceries. We do still spend wisely in the grocery store, but let’s face it, fresh fruits, veggies, and high quality meats are expensive. For some people it is a matter of choice, but sometimes it is a matter of not being able to afford food…period. Can you imagine if you simply could not afford to buy groceries at all? There are so many people who go to bed hungry every night. So many people who are malnourished. My gratefulness about food is huge. I’m so grateful that I now have the knowledge to be able to nourish my body in a healthy way, and am able to provide it with all the food that it needs.
I’m grateful I have this blog to write about things….and I’m very grateful that there are some people out there that read it. Yep….this is what I needed today.
I really do appreciate life so much!
I love my life!
Do I have challenging days? Yes!
Will I feel bad on days again? Yes!
Do I accept my life the way it is? Yes!
Do I wish it were different? Sometimes….I’m working on a NO for that answer, but I think “Sometimes” is pretty good. I still love my life, just as it is, even if nothing changes, even if it gets worse, I still love my life!!
That’s pretty important I think. I love my life, all the good parts, all the bad parts, all the fun parts, all the hard parts….I love my life!
I recently wrote a post that could easily have taken up 3 posts worth of writing. You know if I wrote that much in one sitting I have a lot on my mind. You also know if I’m making up words to say how I feel, I’m in a one heck of a state!
Some of the things I have written you will still see, I’m breaking it up into a couple of post, some of it you won’t….I have decided I just can’t talk about it here. Maybe some day, but not now. I want to, I think it will help some people, but it’s just something that I can’t talk about yet, at least not here. And that’s hard on me, for a number of reasons.
So…on to what I will talk about… (and it turns out this post is MUCH longer than anticipated….yep it’s one of those days. as you get to the end you will understand, but forgive any errors please, I couldn’t go through and edit this, I am in too much pain. But I wanted to get it posted. at least part of it needs a voice…..)
Saturday my father and sister came for a little visit. It was nice. Even though we only live one state away we don’t get to see each other much. They don’t get to come often, and I can’t travel very often. Unfortunately, since our trip to Tucson, 2 years ago, I haven’t been able to travel at all. I thought it was going to be better the last few months, but then I hurt my hip. Now I can’t ride in the car across town without being in severe pain. So who knows when I can go to South Carolina. Thankfully, my sister brought my dad to see me. We had a nice lunch and visit, then they were on their way. Before they came I decided to get a shot of Toradol, an anti-inflamatory to help me not be in intense pain while they were here. I wish I could have them more often, but you can’t take them on a regular basis. I was very pleased that I could visit with them without worrying too much about the pain. I was also happy I could hear them fairly well. I couldn’t hear my father at first, but after a little while I realized if I sat closer to him I could hear him better. What a relief. I felt bad that I could understand everyone else, but was having such difficulty understanding him. All in all, a good visit.
After they left I decided my hip was still feeling well enough we could go and meet the dear lady from the agency who had Kiki and make her adoption final. So off the Pet Supermarket we went. Luckily, they are very nice there and let me have a chair to sit in while we shopped a bit and adopted our newest family member. Since the vet thinks Kiki is between 1 1/2 and 2 1/2 we decided that her adoption date is her 2nd birthday! So September 27th is her birthday! She was lavished with gifts. She got a new sweater, because she has been cold on some of these early fall mornings when she goes out. It is red, and looks quite fetching on her sleek black and white body. She also got a new toy that she loves! She has abandoned all of her other toys for this toy, it is so funny! She also got a new tag, a little purple heart with her name and phone number on it….we need to get her microchip reprogrammed. She is officially ours now! I was so very happy when we were in the store and one of the people who work there told me that he had seen Kiki so often when she was there waiting to be adopted and she looks like a different dog. She is so happy and well mannered. He said it is amazing how much she has changed in just the short time we have had her. That couldn’t have made me happier. I knew then, that yes, Kiki really was meant to be our little girl.
Saturday night I was getting ready for bed. I was sitting on the side of the bed taking my night meds and suddenly I felt the Meniere’s signals. Okay, this has not been unusual lately. I’ve been very acute for the past month or more. Having mini attacks many times a day, so I wasn’t worried. I took a deep breath and calmly tried to focus. Then FLUSH..heat through my body. Ugh. OK. Calm. Focus. You got this. Whoosh. better lie down. Focus. feel the hand on the table it is steady. you are not moving. HEAT. HOT. I’M ON FIRE. Stuart walks in. “Attack?” “yep. ice.” Focus. breathe deep. calm. calm. Spinning faster. wow. deep breath. focus calm. you got this. it’s ok. spin. stop. spin. stop. breath…..Ice..Good! Still hot. chest hurts. can’t breath deep. calm. spinning fast still. calm. calm. it’s ok. it’s part of you. you can do it. “Stuart…shot please” focus calm. calm. so tired. (took meds earlier. Stuart got shot ready,(I’m lucky I have Phenergan shots available to me, it is an anti-nausea/vomiting drug) he was about to give it to me and dropped it. Couldn’t find it. suddenly spinning stopped. yes. OK. rest.
BAM. started going the other way! What the? OK…calm down. but this is weird. you can do it. focus. feel your hand. – what the heck is happening? this is not right. – it’s all OK. focus. calm calm. focus. it’s just different. – no, this is very different. now it’s jumping all around. what is going on? – calm down. calm down. calm calm. focus. it’s kind of freaking me out he can’t find that shot – focus on your focal point. it will be alright. – I need the damn shot! I’m getting scared. – shhhh. calm down. focus. focus. breathe. calm..calm. this is not real. the room is not moving. You are not moving. calm breathe. – Ah…shot. It will be better soon. – Calm…calm…shhh. AH! oh my gosh….”Stuart”. “I’m right here babe. I’m not leaving you.” “I can’t stay awake. I’m all dopey. If I fall asleep it gets worse! I’m so sick. I’m scared. It hurts. My stomach hurts.” “I’m right here, you are safe. I’ll try and keep you awake if you want”
This went on for a long while. I kept dozing off no matter what. It was horrible. I would wake up spinning even more! Then I got VERY sick. I was going to throw up. But nothing came up. I just gagged, and coughed, and mucus from my lungs came up. I couldn’t take a breath in! I had this huge gag that felt like vomit was coming up but it was like a HUGE burp came up then I couldn’t breathe. My lungs hurt. I was having an asthma attack and trying to throw up at the same time! I was so afraid I was going to have to go to the ER because I could not breathe. Stuart was holding me putting my inhaler in my mouth for me. I got enough in to breathe again. (afterward he told he kept watching to make sure I was getting in some air and not having any signs of needing oxygen….but he is also thinking we may need to see about getting oxygen for me at home.)
Finally, it calmed down enough that when I dozed I stayed asleep. And I slept! The pain from my hip did not wake me up at all that night. I was so exhausted.
The next day, was hangover hell.
I felt so bad. I was trying so hard not to feel like I handled thing badly. I really freaked out. I panicked bad. I couldn’t stay mindful. I couldn’t accept what was happening to me. I hated my body, I hated my life, I was afraid I was dying and hoping I’d just hurry up and die at the same time.
This is not what I have been working so hard on. This is not mindfulness. But it is. Mindfulness is a practice. You can’t beat yourself up if you don’t live up to your expectations all the time.
Mindfulness is not just about making it better. It is about feeling how you are, how things are now, and not being judgmental about it. It is about being gentle with yourself. On Saturday night, I could not accept my condition. I could not handle my situation without panicking. That was the way it was. I could feel every nerve in my body screaming that it wanted this to end. I couldn’t accept that this was just the was it was…I fought it. But I was there with it. I had a hard time looking back at it non-judgmentally. But now I can. I can look back and say, I had a damn hard night. I handled it the best I could. Things happened that have never happened before, and it really scared me. Who knows, I may have handled it better than I would have in the past, because of my mindfulness practice? I’m okay with how I handled it. At first I was sad about it. I felt like I failed myself. I didn’t. Mindfulness is hard. Living mindfully is not easy. But it does making living your life easier. Or at least it has mine.
So I’m off to being more accepting of how my life is, even when it’s that bad. It’s my life. It’s much easier on me when I accept that. If I try to fight it, it makes it worse. It really is better when I accept that I have my illnesses, and I have the symptoms, and all the things that they cause. I have found that I can deal with those symptoms better when I stop fighting them so hard. I feel better. I cope better. Heck, the symptoms have been easier.
I’m just saying how I feel about all of this, I’m feel I’m just testifying..haha. I’ll write a more coherent post about this sometime. With references. Or maybe I’ll find a guest writer. Who knows. For now, we’ll just see how it goes with me….hope that’s alright with all of you.
On Sunday, I decided I couldn’t stand the pain and the constant Meniere’s attacks any longer. They use steroids to break both cycles. However, too high of a dose of steroids can really mess you up with Meniere’s and make you have worse attacks. So I started on the dose that the urgent care doctor gave me and put a call in to my otologist at Duke on Monday. Unfortunately, it was phone tag for a few days, and then he wasn’t comfortable messing with this prescription. I do not think he understood the situation!! I am so beside myself right now! I mean right now, I just found out about this. I am looking at these pills trying my best to figure out the best way to ramp down off of them without it being too drastic. Going from 4 on one day to 2 on the next is not a good idea. So I take out the prescription bottle and count how many I have left. 10. Wait, I should have more than that to meet the original prescription. I count again. 10. STRESS! I filled this prescription weeks ago. Will the pharmacy really believe they shorted me?
Thankfully, yes they did. I got 6 more pills. I can do this. Breathe. Take the day as it comes, and accept it. That’s all I can do. So….I sit down and think. I will figure out how to ramp down the steroids that is between the prescription the urgent care doctor gave me and the prescription my ear doctor gave me before. I’m sure I’ll be fine. It’s not quite such a severe drop between going down. Should I be messing with my prescription? Heck I don’t know! But I feel better, with this regimen. I’m too afraid to ramp down so fast.
For those of you who have been reading for a while….remember the Walmart incident? That happened because a doctor put me on a high dose of steroids that ramped down too fast.
Now you once again have a VERY LONG POST.
and I’m too tired to read over it to fix any errors. I’m being a very bad blogger. I hope you will forgive me. I just fell again today….I’m not going to write about that now! I’ll tell all about my back/hip/leg pain after my doctor’s visit on the 6th! I’m sorry, but I’m not up to being an editor today. 🙂 My back/hip/leg thing…just isn’t going to get better if I keep falling is it? Of course, that’s why I’m falling!! I can handle it…..one moment at a time. I can handle anything for a moment, after all, isn’t that really all we know we have, this moment?
***rest in peace to my cousin Curtis Winslow. My childhood memories are full of you. 1958 – October 1, 2014
Picnic with Ants 
I was involuntarily committed to a psychiatric facility, I was suicidal. I had called a Suicide Help Line and was talked into coming in to a mental health facility to “talk”. They wouldn’t let me leave. I was taken from there to the psychiatric hospital in the back of a police car. It was scary. Really I wanted to be committed, I was afraid of what might happen, but officially it was involuntary. My insurance would only pay for inpatient treatment if it was listed as involuntary. However, once I got in, I wasn’t told my rights.
I wasn’t treated badly. I actually had a good stay for the most part. There were no windows my room. The view from my window in the main room was through a thick metal screen, it was more like a prison. But it was a nice atmosphere for the most part, and it was clean and the people were good and they had really good food!! It was surprising to me how much the patients were supportive of each other. There were times when you would hear screaming and there were times when everyone was rushed into their rooms and closed in….but for the most part, it was a quiet and restful stay. This hospital had separate wards depending on the seriousness of the illnesses. This is not always the case.
My biggest problem was the psychiatrist they made me see. He made me very uncomfortable. I was a rape victim and he gave me the creeps. He insisted on being in the room alone with me. I complained and complained and I couldn’t get this resolved. He said I had Borderline Personality Disorder and my complaints were part of my disorder. (I had already been diagnosed as being Bipolar. This diagnosis was again confirmed by a different psychiatrist.)
My second problem was I was told I needed to stay beyond the time my insurance normally pays and that they had gotten approval from my insurance company for the extended stay. They didn’t do that. Since they didn’t get that, my insurance didn’t want to pay for the rest of my stay. Well I had no way to leave. They wouldn’t let me. Plus, I didn’t know they didn’t get approval for the rest of the stay. I left there with a HUGE bill.
This stay ended up making me almost declare bankruptcy. did it help me mentally? Yes. Mainly because it got me in the system and I was able to continue treatment.
I did end up not having to pay for the psychiatrist outrageous bill he tried to saddle me with because of the complaints I had made against him and the many request to have him removed from my case. I also had most of the bill from the hospital dropped because they didn’t get it authorized, and since I was involuntarily committed I couldn’t be held legally obligated to the papers I signed when I was admitted. I wasn’t of “sound mind”.
However, I lost my job. I couldn’t pay my bills when I got out. I was single and alone. My roommate stole from me when I was in the hospital. I had no one to help me. If I hadn’t been so determined to get better, and stay the course, I would easily have stopped taking my medications….I had a hard time affording them. I would have stopped going to therapy and to a psych doc….again it was very had to pay for it. However, I wanted to be more normal. A lot of Bipolar people really miss the highs…I did. I’m an artist, and I will say, I feel I creating has been a lot harder than it was before. But I will not jeopardize my health.
These are trials I had and I was really there because I wanted to be. I didn’t have an advocate. I wish I had. There were a lot of things going on with my case that no one told me about.
If I had not been so eager to want to get better, I don’t know if I could have done it.
The system is so very far from perfect!
I worked so hard. I still work hard at it.
many people who are involuntarily committed won’t be committed to working at it.
Many people who need help and want it won’t even be able to get in a hospital because they don’t have the funds.
No one should feel they have to declare bankruptcy because they need help with their mental health. My credit was ruined for years after this hospital stay. I was afraid to answer the phone because of bill collectors. Yes, I was able to finally get the bills straight with the hospital, but it put me in such financial straits with everything else it followed me for years. My employer didn’t hold my job for me. So when I got out of the hospital, I had no job, and a whole lot of bills. I was still in a very fragile state of mind. This is not the ideal way to enter back in society after leaving a psychiatric facility.
Can you see the Inequality in the Mental Health Care system?
Can you see how different it would have been for me if I had the financial means to pay for a higher quality facility, and have an advocate help me?
Can you see how different it would have been for me if I had not had the financial means I had? If I hadn’t had insurance? I easily could have either have been ignored, or put in a state hospital. I could have been put in a ward with people who were very dangerous. I could have gotten lost in the system. These kind of things happen every day.
What can we do to stop the Inequality in the Mental Health Care System?
The first thing we can do is talk about it.
Talk about it more….and more….perhaps the more we talk about it the more attention we call to it.
The more attention we call to it….the more noise we make about it…they will have to do something about it!
How? What? I don’t know. I don’t know how to fix it. I wish I did.
But I do know this is an inequality that must end! People cannot continue to suffer because they can’t afford mental health care.
To read more on Psychiatric Hospitalization please visit the National Alliance on Mental Illness site. NAMI