Crisis over the Holidays

On December 31, 2014 By WendyIn Bipolar, Chronic Illness12 Comments

Oh no! What a time for a medication mess up!

I was loading up my pill-box for the week and only had 3 of my mood stabilizer…..hmmm, that’s not right?

So, I asked Stuart if there was a refill that hadn’t made it in my case. (I have a case where I keep all of my medications, then I load up my pill organizer every week, if there are not enough pills in the bottle to fill the organizer the next week then we order a refill….easy, peasy….medication is always kept up to date.) Stuart didn’t have any refills for me….uh oh. He said he’d look into it.

We are not using a mail order pharmacy. A new thing with our new insurance. If you have a prescription that is maintenance you have to get it from the mail order pharmacy. So, he goes on-line and it’s right there, with refills so he orders it, should be here within 2 days, no problem. Great!

Big Problem. 7 days later I realized the medication hadn’t come. How did I realize this? I was crying uncontrollably for no reason and let’s just say my moods were going crazy. My head hurt so much I thought I was going have to go to the ER. What was wrong with me??? Wait? “Stuart? Did my medication come in?”, “No?” That means I hadn’t been taking my mood stabilizer for 4 days. Rut Row!!

Stuart calls the pharmacy. Yes, the prescription had refills, 3 to be precise, but it was written as 3 one month prescriptions. They needed it to be one prescription for 3 months. So they had a call in to the doctor to change it. Oh my gosh! Did they think to call the patient to see if they needed the medication sooner than they would be able to get it to me by doing things this way? NO! Stuart told them that I needed the medication NOW, so they put ONE month worth in the mail and I got it the next day, that meant I was off of my mood stabilizer for FIVE days!

This is not a drug you just go cold turkey on. You don’t just stop taking it and not notice. There is reason you ramp up and off of these kind of drugs. Of course, this had to happen just a few days before Christmas…..as in, I got my new pills on Christmas Eve. Can you imagine the hell I have been going through? How have I managed this without going absolutely crazy? Well, I am crazy we know this…..hehehe (yes that is one way I deal with things like this….I try to keep a sense of humor…sometimes it works.) First, I knew how I felt was all because of this medication mess up. My feelings were not me. What was going on in my head was not me. Yes, this is very hard. I am lucky that I have a good friend who understands a lot of this and I emailed her a lot and she was wonderful. I’m also lucky that my husband listens and doesn’t get mad when I’m very unreasonable at times like this, he understands it is the medication. Yes, sometimes he does forget then we both look at each other and take a deep breath and say…..things will be better when the medication gets ramped back up.

Oh yes, that’s another thing, I have to ramp back up on this medication. I couldn’t just jump back on at the dose I was taking, I could have gotten very sick. So still, I’m not quite the Wendy I usually am. I won’t be for another week an a half. You have to ramp up on this medication slowly or you can get a very bad rash that is not a good thing.

I’m also dealing with this by trying to be mindful….yep there’s that word again. I’m trying to just focus on this moment. That has been VERY hard to do. I have gotten all caught up in the Holiday Hype, in my mind. Everywhere I looked people are telling you that you are supposed to be spending time with family and friends. Really, does the TV not make you feel like something is wrong with you if you don’t have a big family and a whole lot of friends to spend the holidays with? Oh I got so depressed. My family? Well let’s just say, I am so not a part of all of that now, but my mind goes to Christmases past when at times like these. Now that my medication is starting to work I’m just fine with how things are, I think it’s a good thing. But when it was all going on I was hurt, and sad and just feeling like my life was so not what it should be. We have no friends here so we were all alone, and I was thinking about how we were cheated out of not having children and well just everything……see where my mind can go when medication is not working???

Deep Breath here huh?

The past is the past.

I can’t change those things.

The only thing I have any control over is today.

Breathe. Just Breathe.

and this is how I live my life most of the time.

This is how I see things most of the time.

This is why I stay on my medication! *wouldn’t you?*

I have some good news!!

I’ve been off of the steroids for a good bit now and no bad vertigo! Yay!! I’m so thrilled! I have to say, I was a bit scared. I tried not to be, but I it was there….fear that the vertigo would start right back up as soon as the steroids came out of my system. So glad the fear was unfounded….see why we should live in the now and not try to predict the future?

I have started Aqua-therapy for my back/hip and I did great in the pool. The physical therapy in the pool is so much easier. I am really hoping it will help. I see the back doctor next week, we’ll see what he has to say. I have been very discouraged about my progress so far, but after just 2 sessions in the pool, I’m hopeful this will help. yay!!

Good news is, in just a short time, I’ll be starting the New Year all stable again.
I haven’t had a full-blown vertigo attack in a couple of weeks.
The aqua-therapy is going well,
and I’m going to making some plans to change a few things around here……so Picnic with Ants is going to have changes….they will happen slowly I’m sure as I’m not able to do things very fast….but we’ll see how it goes.

Here’s to a New Year!

May we all great it with love, laughter, and much good luck!

Tomorrow is my mother’s birthday.

I will be celebrating her life.

I’m very thankful for the 64 years she spent with us on this earth, especially the almost 30 she spent with me.

I love this little book…so I’m passing it along to you for Chirstmas. :-)

On December 22, 2014December 22, 2014 By WendyIn Chronic Illness, Mindfulness6 Comments

A while back I stumbled upon Lisa Esile’s blog and well, she has a way of saying things that just makes me think…yeah, that makes so much sense….thanks.

She has this cute little book ebook that she gives away.

That’s right, she gives it away.

It is so cute…I just loved it.

I think you will to, so I wanted to pass it on to you.

Here’s the link for you to go and grab a copy and read it…look at it….(it has some cute illustrations).

7 Secrets Your Mind Doesn’t Want You To Know

It’s really short, and it makes you feel good.

I didn’t have anything to personally give you for Christmas this year so I thought I’d pass along Lise’s book!

I hope you like it!!

(So…just click on the picture, or the title of the book and it will take you to a page where you can download a copy of this cute little book.)

Happy Holidays!

guilt, blame & chronic illness(es)

On December 14, 2014 By WendyIn Chronic IllnessLeave a comment

I needed to hear this lecture recently, and will probably need to hear it over and over …
Thanks Phylor for “lecturing” us, and reminding us, that there is simply no room for all that guilt and blame in our lives. This is a post I know I will come back to and read over and over.

More Than Meniere’s…what’s next

On December 11, 2014December 11, 2014 By WendyIn Chronic Illness6 Comments

On Tuesday I went to Duke. I needed to see Dr. Kaylie and get his opinion on what has been going on with me and see if he could help at all. To tell the truth, I didn’t have much hope, and as it turns out, that was a good thing.

I told him the long drawn out details of this whole ordeal, from me starting to feel so much better and the decline…and all the strange symptoms I’ve been having. Things that just don’t add up to being just Meniere’s.

He couldn’t tell me why I this was happening, or why I had such a good spell. He could say, this is not just Meniere’s. Meniere’s Disease is a set of symptoms. It should really be called a syndrome, not a disease, as the only way you are diagnosed is by having a set of symptoms, there are test to rule out other things, and there are test that say it is vestibular, but there is no test to say….this is Meniere’s Disease. I have all of those symptoms….so yeah, I have Meniere’s disease…but I have more symptoms that don’t go with normal Meniere’s. So what else do I have? No idea.

Some of my symptoms could come from different things other than my ears. (possibilities….my pulmonary issues are causing me not to get enough oxygen, I may be having orthostatic hypotention issues…ect.) These are things I need to have looked at first. I want to make sure that some of these are not making my vestibular symptoms worse. So, first off, I’ll be seeing a new general practitioner here in Charlotte and getting some test run and getting referrals and such. I’ll talk more about that as it happens.

Then, if the vestibular symptoms don’t calm down, or go in remission, I’ll most likely be heading to Johns Hopkins Vestibular Clinic to see if they can figure out what is going on. (I discussed this with Dr. Kaylie, and he agreed that this would be a good place to seek some answers.)

That’s the plan right now.

If the vertigo gets so bad that I simply can’t function and see other doctors I will probably be trying to go to Johns Hopkins sooner.

Stuart and I have talked a lot about this and he wants to do anything to try to find some answers. There would be a big cost to go to Johns Hopkins. The trip alone would be a big cost. This makes me uncomfortable, and apprehensive, but in the end how could I not go? How could I turn down the chance to make this better? Yes it will be expensive and I will feel bad about that, but it could give me the chance to have a more normal life with my husband, how could I turn that down?

Right now, I’m ramping down off of the steroids. Scared much? you bet! However, I’m very happy to find my emotions getting back to normal. I can’t control the future, so I’m trying hard not to be worried, but I can’t say I’m not. I’m afraid when I get off the steroids I will start having violent vertigo every day again.

This has really caused a lot of problems trying to heal the herniated disc in my lower back. I haven’t been able to go to physical therapy on a regular basis. My physical therapist and I discussed it and put it on hold for a few weeks, I start back on Friday. Hopefully, I will be able to go back regularly now. I am supposed to start aqua-therapy on Tuesday. I know it will help my back a lot, but I haven’t been in a pool in a long time. I do not know if I will be able to do the aqua-therapy, or if it will actually trigger a vertigo attack. Guess I’ll find out on Tuesday! The long ride in the car to and from Duke really caused my back a lot of pain. I don’t know how it could have caused any more damage, but it caused a lot more pain. I keep wondering if my inability to sleep well has caused my symptoms to be so much worse. I have not been able to sleep more than 2 hours at a time since I got hurt. I do sleep about 8 hours a night, but no more than 2 hours consecutively. hmmmm… Wish I could take something for the pain, but that makes the vertigo go crazy, plus, pain medications make me itch and my stomach hurt. I guess the first thing I need to do is to figure out a way I can sleep more! Meditation alone has not done the trick….I’m working on it. (I will say, it’s not just the pain that gets me up every 2 hours, I usually have to pee too. I have to take something to help keep my ears clear and it causes me to pee a lot…so…yeah, consecutive hours of sleep are hard to come by.)

I’m kind of on an emotional roller coaster about all of this right now. I’m feeling a bit torn apart that my doctor couldn’t help me, don’t we all feel like that sometimes? We grow up going to the doctor when we are sick and they make it better, now they can’t make it better and I feel so torn up inside, but I understand, I know doctors don’t know everything. I just want to be that little girl again that goes to the doctor and gets her medicine and wakes up feeling better. I actually broke down last night thinking, why can’t he help me?

Then the funny thing is, I am actually much calmer now. I feel this calm acceptance. This is how it is. I don’t have any more answers than I did before, but I feel better somehow. I now have a plan. It’s flexible enough to change as things change and that’s good, as I can’t predict how the future will unravel. I’m taking things as they come. That’s all I can do.

It’s just so hard sometimes…

On December 8, 2014 By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness3 Comments

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.

Why does it have to be so hard????

I did it Alone. Spinning another day…

On December 2, 2014 By WendyIn Meniere's Disease4 Comments

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?

Not the post I planned….

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

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

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

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

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

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

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

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

Now what?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It has taken me all day to write this.

I hope it makes some sense.

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

hope you don’t mind….

I might just need someone to listen.

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