So I shall not try to explain things, or guess at things, I’m just going to tell what is happening.
Vertigo!!! Nearly constant. mini spins, mid-line spinning, and horrendous attacks. When I was diagnosed with Meniere’s I was told it could be one of the worst things you can get that won’t kill you, but you may wish it would.
For the past few weeks, I wish it would.
I’m so miserable. I can’t walk without aid, and then it’s very difficult. I often can’t move my head without going into a full swing. Right now I’m having a decent moment, so I’m trying to write.
I’m scared. I went to a doctor here, and he thinks it’s allergies. (I’m not so sure, I take 3 different meds for my allergies.) He put me on steroids and gave me drops to reduce the inflammation. No infection was seen. I feel have been worse since starting the medication. I’m supposed to see him again on Friday, the 21st, but Stuart is calling him tomorrow.
I can’t be left alone. We are having a hard time. Stuart needs to leave to go grocery shopping and such, but it’s almost impossible. He left for a bit last night to shop, and I ended up spinning and terrified. I called him, but of course I could hear when he answered, I just kept saying help. He found me in a lump on the floor. I know it scared him as much as it did me. I am not prepared to take care of these attacks by myself. I know I have, but it is terrifying even with help.
We came to Tucson hoping I would feel better here. Oh how wrong I was! I never thought I would feel worse! The same maybe, but not worse. I’ve seen family once the whole time we have been here. I haven’t seen any friends. I’m just so sick. I often can’t even move my head.
I want to be home where my doctors are. I don’t know if Tucson is doing this to me, or if it would have happened any way, but either way, I want my doctors! But now, I don’t know how we would get home. Riding in a car is torture. I can only imagine what riding in a plane would be like. I often can’t lift my head without spinning very fast.
So that’s all I can write for now.
I made a huge mistake, I should never have left NC. Having family and friends close here is nice, we do have some people we can call on…but this is new to them, how long would the charity last? At home we don’t really have a support system….but I have my doctors….and that’s important! If I could have the support from those here, and my doctors in the same place, I would be a much happier person.
Anyone reading this who are close to us now. Stuart could really use some help….it’s hard for him to admit, but he is overwhelmed by all of this, I can tell.
(also my migraines are back with a vengeance. I think the Botox has worn off. It really seemed to help for a while!)
Buddha, by Wendy Holcombe So much to be grateful for…
Yesterday Stuart and I were talking and I told him I was grateful for many things this year. He looked at me a but stunned. Yes, it’s been a rough year.
I was diagnosed with Idiopathic Intercranial Hypertension, this knocked me off my feet for a while, and I got a bit depressed over it…but I’m so very grateful that the medication works!
I’m still having severe vertigo attacks….but I’ve only had 3 or 4 this year…That’s amazing, and something to be grateful for!
I have migraines, and migraine associated vertigo – I’m grateful I have a super doctor now who specializes in headaches. I’m also grateful that the vertigo I have with migraines, is not as severe as the Meniere’s vertigo.
I lost my dearest companion of 19 years….I still miss my Sandy so much every day – but I’m so grateful she did not suffer, and I’m grateful for all the wonderful memories I have of our lives together. “Everybody Loved Sandy”
I’m grateful my father pulled through a near death experience, and my sister was there to help him.
I had a very hard time after someone wrote me a note that simply shook my world, and not in a good way. I’m grateful (thanks to studying Buddhism) I can breathe in that hate, and breathe out happiness and love toward others. I’m also grateful that I do not have to send a reply. It’s a rough thing to accept, but some people will not like me, may even hate me, but as long as I still like me, I’m ok.
I lost my hearing in my left ear as of July last year (2011), and have greatly reduced hearing in my right ear. I’m very grateful for modern technology, with my cochlear implant (received July of this year) and hearing aid I can hear. I may not be able to hear as well, but with the help of technology I am not deaf all the time. I’m so very grateful for this!
(**a TMI note) I was diagnosed with vulvar vulvodynia, a painful condition of the vulvar region. I’m so grateful that my doctor gave me topical Lidocaine, now my husband and I can have relations with much less pain. (thank goodness there are times my head stops spinning long enough to try this.) : )
I’m grateful we were able to come to Tucson for the winter. The trip out was not as hard as I expected….Thank Goodness. The time we’ve been here so far has been rough, but I have faith I will feel better and better. I’m so grateful for the beautiful weather we’ve had so far.
With every challenge I’ve been through this year….and I haven’t mentioned them all….I’m so grateful my husband has been right beside me, holding my hand, being the best advocate for me (he has to make many calls for me since I can’t hear on the phone, he’s a wonder at making doctors understand), he loves me, and thinks I’m so very special. I tear up just thinking about how very lucky I am to have married this wonderful man. (I am most grateful for my husband and our relationship.)
Stuart and me, a couple of years ago. Every time I look at this photo I can feel the love pour over me. I’m so very grateful for the love my husband shows me. (photo by Jenn Dorff)
And last but not least, I’m grateful for my friends. Especially the special people I’ve met through this blog and others. It makes me sad that others have to go through chronic illnesses with pain and suffering, but I’m grateful we can share our experiences with each other and know we are not alone.
There are many other things I could list that I’m grateful for but this post would be very long indeed. This post has made my lightened my heart and helped with things I was coming more and more depressed about, I believe I should take the time to notice the things I’m grateful for much more often.
If you are in the US, may you have a safe and joyous Thanksgiving. (remember, take care of yourself first.) I was not able to partake in the family festivities today, a migraine and unsteadiness simply would not allow it. (especially with all the noise, I admit I was afraid, this would have been the first get together since I got my CI, it’s scary going into a situation with a lot of noise when you can’t hear like you used to.)
May we all remember to take time to think about the things for which we are grateful.
I always hoped I’d never need it. When I made up my emergency kit it was more a peace of mind thing, not a real thought that I’d ever need it. On Wednesday, I was so grateful I had that emergency kit! (TMI -This post contains information that may be too much for some people.)
The day started off so wonderful. You can see that in the last post….but later that afternoon I was hit with an attack, and I was in public! We decided to go out and check out a few stores that carry allergy friendly foods, but we were hungry and thought we’d grab a bite to eat. (yes I know, too much food out…too much sodium! But I had steamed chicken with vegetables and rice, no sauce….I ordered smart!) We were sitting in the restaurant and Stuart pointed out something to my left and over my head, I glanced at it and everything spun around. It scared the mess out of me! First I started to panic, then I felt it was slowing down. I thought it was Migraine Associated Vertigo and would pass after I took my migraine medication and emergency pills. Boy was I wrong! I took the pills and things didn’t get better. I was getting sick. Very sick, and the world was spinning faster and faster. I handed Stuart my purse and asked him to get my emergency kit. I needed to cool down, and I needed something to throw up in (just in case). I have cold packs in my emergency kit that turn cold when you twist them…or hit them really hard. This was a wonderful thing. I needed to cool down my core fast. We left the restaurant as soon as I could stand. It had slowed down so I thought the medication was finally working and we could get home with minimal discomfort.
I was VERY wrong again! We drove a ways fairly well, then the spinning got so much worse. I couldn’t stand the car moving. I asked Stuart to stop the car, he couldn’t stop where we were, and I started to panic….”Please just stop the car!” It was torture. I was actually screaming before he could get stopped. He stopped. Later he told me he was not in the best spot. It was pretty public and he knew I’d feel uncomfortable. Frankly, I didn’t care, nor did I notice. I was throwing up (thank goodness for those little garbage bags I packed in the Emergency kit), and I was losing control of my bladder. I was devastated. We were in Stuart’s father’s car, it had just been detailed….I mean like an hour before we left in it….it has leather seats! How could this be happening to me, in my father-in-law’s Lexus? (luckily it was his older car, but still, leather seats!!) Stuart swears when he went to clean it up, there was nothing on the seat, and no vomit anywhere. I did miss some the last time and got it on me. I’m so glad I was wearing a reusable pad, I use them for my menstrual cycle, but I also use them most of the time in case I sneeze or cough and pee a little.
We got home, and got me inside. I collapsed on the couch and passed out. I woke up an hour later gagging, but didn’t throw up. My body was spasming, it feels like I’m convulsing (not that I’d know what that feels like first hand), this lasted what felt like hours. I got very scared. I was having a hard time breathing with the spasms, and for the first time during one of these attacks I was afraid of dying. Then i passed out again, but only for a few minutes. When I came to, I decided I wanted to try to get to the bed. We succeeded. Not without much difficulty, but I was out after that for a few hours.
I know most of you have heard my horror stories of my vertigo attacks before, but the main part of this recount is how much my emergency kit helped. In it I have cold packs (to cool me down), small trash bags (to throw up in), large Ziploc bags (to put the soiled items in…and bags that have throw-up in them), wash cloths (to wipe my mouth, and help cool me down when they are wet), extra meds (we always have my emergency pills on us, this is an extra safe guard and it has more meds than I usually carry), a card explaining what is happening to me…and I keep a water bottle with me (normally this is just to drink from, but when I’m having an attack it helps to wet wash cloths and I need to rinse my mouth).
I will never think I can go without that kit again. I was recently thinking it was taking up too much room in my bag, no more! If I go out with nothing else, I will have my kit!
I’ve been working on this post since Thursday, the day after it happened. I’ve had days and days of extreme disequilibrium. I couldn’t move my head at all without seeing the world move. It was like it just didn’t keep up with my head….strange. I just started walking some unaided yesterday. Today I feel better and can get around by myself, but I still feel a bit wobbly. I’m pretty sure this wasn’t just a Meniere’s attack. My hearing in my right ear did drop significantly, and hasn’t returned to its normal level…that’s weird for me, normally after the attack ends the hearing comes back…at least almost to where it was. We think I had another spinal “blow out”, and my Cerebrospinal Fluid Pressure (CSF) dropped. Stuart suggested the first night after the attack to not take my medication that controls the high CSF, it’s a strong diuretic and I couldn’t afford to lose any more fluids. But I started taking them again the next day after I was sure I was well hydrated. Then things didn’t get better. I was scared that I would feel that way all the time. I was having a big pity party for myself (sorry I didn’t invite you all). Yesterday morning, Sunday, I woke up feeling much better. I took my CSF medication, then I got up and fixed myself some breakfast. After making breakfast I turned and the world spun, dang-it! But it was at that time I realized my CSF pressure was too low. I had all the symptoms…the wooshy head, a headache when standing..ect. I went back to bed and lied down flat and the symptoms lessened and went away. Ah…yep, low CSF. So yesterday I spent the day lying flat. I’m holding off on the high CSF medication until I get signs of high CSF, then I’ll ramp back up on them.
Today I’m feeling much, much better, but still weak. My main goals for the day are a shower, and finishing this post…not necessarily in that order.
I’m sure I’ll feel better and better. The weather here is still gorgeous. We had an overcast day, but it was still nice. Today we have the windows open and are enjoying the fresh air.
The trip to Tucson, AZ was a bit rough, but not bad. The recovery after we got here was much harder. We arrived late afternoon on Friday, and today is the first day I feel like I don’t need to sleep every moment.
Today is a beautiful day! Right now it’s in the 70’sF and the high today should be in the mid 80’sF. At home, Durham , NC, it is in the 50’s all week. This is the reason I wanted to come to Tucson….oh the weather! We had a cold front here for a couple of days right after we got here…..I laughed, Stuart was worried about me and the “cold front”, it was in the upper 60’s during the day. It did get in the 30’s late at night, but I wasn’t out during those hours.
The second day we were here I walked outside to get some fresh air, I saw the prettiest bird! It was the reddest red I’ve ever seen! I looked it up and it’s the Vermillion Flycatcher.
That’s one red bird, isn’t it? I was lucky to see it, normally it has migrated by now. Right after seeing this lovely bird I saw a hummingbird, actually, he saw me first and was quite interested. He buzzed by my head, then came back and hovered about a foot or so from me and just looked at me. It was a brilliant iridescent green. What a lucky day!
Today I have been sitting outside enjoying the sun. I know it won’t be this nice all winter, but there is much less barometric pressure change here than there is at home.
I have much more that I planned to say, but I have had a bit of trouble with my email. I just found out that one of my email addresses that I have imported to my main email address, so I can read everything from one place, wasn’t being forwarded. This email address is a pretty important one to me, and it appears it hasn’t been forwarded for months. I wondered why I wasn’t hearing from some people. Now I have about 1500 emails to go through. I’m sure I’ll get tired and start deleting many without even thinking about it….so if you have written me on my “name” email, please forgive me for not getting back to you, and try again.
One more thing about email…well commenting on posts actually…On our ride out here I read some of your posts and commented on them, I don’t think they posted. I’m not sure I will be able to go back and comment on everyone’s posts. I’m sorry. Please know I was thinking of you on our way across the country. (FYI…I-40 is a boring route) I read many posts, and even tried to keep in touch.
Some have asked about how Max did on the trip. He was very good. I was afraid he wouldn’t settle down since Sandy wasn’t with us, but he did. The only time it was evident that Sandy was a real help with him, was when we’d try to leave the motel in the mornings. Max would hide! When Sandy was with us, Max didn’t want to be left without his dog, so when Sandy was ready to leave, so was Max. But for the actual ride in the car, Max was great. He meowed quite a bit the first day, but he settled in and slept most of the time. Oh the life of a spoiled cat. (he got tuna every day to coax him out of the motel, I’m surprised he hasn’t been pestering us for tuna since we arrived!)
So I to all I hope to be posting more and more about our trip and how it is affecting my illnesses. (I should say that on the drive here we mostly ate out….way too much sodium! So for the past few days my tinnitus has been louder than ever, and I’ve been very off-balance. I’ve been drinking lot’s of water and really watching my sodium intake, so today I’m feeling much better, but still not hearing as well as I was.)
Opps I forgot to Publish this…*smiles* So it’s a little out of date, but much of the info is still good. This post was more of a Freeform post….I just sat down and wrote, if I felt like it or not and didn’t re-read or edit so please forgive the errors that I’m sure are in abundance…..so…here’s for a bit of out dated news (I’m pretty much over my cold, it’s still hanging on with Stuart)
You will not believe this, but I thought I finally published this yesterday! I looked today…no it was not there. I think this post is haunted….read at your own risk.
For the past week I’ve been taken over by the cold virus. (you aren’t normally cold when you have a cold…so where did that name come from….and no I really don’t care enough to try to look it up…just pondering.)
My dear sweet husband that does so much for me caught my cold around day 4 of my dreaded mucus maker. He is such a trooper. I can look look at him and tell how bad he feels and how tired he is, but still he would take care of me. I will admit, I have not been able to walk very well since I caught this virus, my ears do not like a head cold! I started feeling better a few days ago (ok, maybe 2), but when I’d try to walk around I’d start spinning. Back in bed for me. So Stuart has been left to nurse his own cold and take care of me too. We’ve had a lot more takeout this week. Honestly, for me, just put my meds close enough and feed me (a lot, this cold has made me ravenous….strange for me when I’m sick!), and I’m ok. I have been sleeping more than I thought possible.
Oh, I must tell this story. I always thought I was very careful with my medications….but I did a really stupid thing the other day. I have my Diamox sitting by my bed because I have to take one as soon as I wake up to keep my cerebrospinal fluid regulated. I reached for it and took a pill….then thought, that pill was way too small. I then really looked at the pill bottle. My prescription for Ambien had been left on my nightstand, instead of in the drawer, and I took one of those. You can guess what happened, I went back to sleep and slept all day! But first I decided I should try to do a couple of things….like answer some emails….not the best idea. My husband also told me of one thing that happened that I don’t remember at all. Yes, I thought I had always been very careful with my medication, but I will me much more diligent now!
As a result of this cold I shared with my hubby, we have decided to post pone our leaving for Arizona by a week. We should be leaving on the 3rd now. The cold just put us way behind in getting things ready to go.
It also postponed my hair appointment. So it’s still long. And I may keep some length. The test results didn’t show any reason that I should be losing my hair, and my doctor said I may want to see a dermatologist. But she also put me on Biotin. I changed my shampoo and condition to one that is supposed to give you more lift or something, I got a real boar’s hair brush, and I’m taking the Biotin. Much to my surprise, I looked at the back of my hair this morning and I couldn’t see scalp. I asked Stuart and he said he didn’t see the “balding” spot I’ve had for a while now. My hair seems to be getting thicker. So….my hair appointment has been changed to Halloween. We’ll see what happens. Stuart said it could be a horror, or perhaps magical. (the magical suggestion came after I told him he was mean and scaring me.)
I’m a bit disappointed we are leaving later now. I love Halloween, and I’m not prepared for it. The house isn’t decorated, I have no costume, I don’t have the treat bags put together, and would need to purchase more stuff. I think our house will lose its reputation this year. (the first year we lived here we had less than 20 kids Trick or Treating….last year we had about 100, they come from different neighborhoods to come to our house….it has kind of gotten a little out of hand….but I love it!) But I’m not prepared! This year, the kids will just get candy. (normally, they all get treat bags…made for different age groups…with things like pencils, stickers, Play-doh, glow sticks, temporary tattoos…..all kinds of things….plus they get candy.) yes, my house is the house to come to! We often have a grave yard set up with a fog machine….oh I love Halloween. The decorations are just so cool.
Yes, I’m rambling a bit. I’m still tired from my cold and when I’m tired I ramble….or sleep…..I think that’s next. No wait, I’m hungry!
BTW: I always buy my treat bag goodies right after Halloween for the next year, I don’t spend a lot….and it’s really worth it to see how the children love them.
People who are chronically ill have to deal with symptoms every day…some days are better, some are worse…but what about when you get sick from something else.
Even a cold can knock me for a loop. There have been many times this year that I’ve felt I’ve had a cold, but it’s only lasted a couple of days. What was that? At least it didn’t last long. I keep thinking it’s probably allergies. Now, I feel like I have a cold…Day 3…perhaps I really do. But ragweed is really blooming here and it’s EVERYWHERE! So maybe??
It doesn’t matter, it’s causing the same symptoms: scratchy throat, more mucus, stuffy ears, a bit of a headache, (but much less than usual when I’m sick). Being sick, when you are already sick can cause all sorts of trouble. My ears are stuffy…not a good thing. I walked in the bathroom night before last and just before I got to the toilet the world moved and my world started to go dark. This is the closest I’ve ever come to taking a complete nose dive straight on the bathroom floor. I held onto the sink for dear life, and started squatting down…thinking if I fall it won’t be as far to fall. I called Stuart and he saved me. It didn’t last long, and I felt a bit guilty for waking Stuart up, but if he hadn’t come I would have been on the floor soon and preventing that is much better than trying to get me up after I fall. He was a dear and stayed right with me.
I’m not sleeping well because of this cold thing…and that’s not good for most chronic illnesses, mine is no exception.
I can say my head has been feeling much better. The day before I started feeling sick, the day was overcast and just yucky. The type of day that normally sends me to bed with a category 8 migraine. I actually went out that day! I did not have a migraine! Unbelievable. So maybe the Botox is working..(crossing fingers and toes). What ever is causing me to have less headaches I’m happy. This week has been nice….as far as the head pain goes. : )
All of this brings me to another question. Sometimes when I have symptoms of getting sick, it mimics symptoms that I get from my chronic illnesses. If you have this problem, how do you tell the difference?
For example, I have a lot of gastrointestinal issues because of the gluten and fructose intolerance. When I have any tummy issues, running to the bathroom sick, I automatically think I must have eaten something I shouldn’t have. or was hit with cross contamination. But, what if it’s really a stomach bug, or worse…food poisoning? I keep thinking it’s my fault, I ate something I shouldn’t have, when I possibly should be heading to the doctor.
Or with my ears. I get off balance, feel like my ears are full…all symptoms of Meniere’s that I have often…but what if I’m getting an ear infection? This has happened numerous times. I end up getting a very bad ear infection because I think the first signs are just my normal stuff.
I don’t really expect any answers. I try my best to be as in tuned with my body as I can, to notice if something isn’t exactly like the usual symptoms, but it’s hard. The thought of going to the doctor and being told it’s nothing just makes me cringe. (but we’ve all had that haven’t we) I think all we can do is try hard to keep ourselves as healthy as we can in spite of our chronic illnesses, and really pay attention when you start to have more symptoms than normal. (doesn’t that sound strange, that we have symptoms that are just every day normal things.)
A little update on other things.
I was supposed to get my hair cut today, but it has been postponed until next Friday. Not that I don’t like my long hair, but it’s thinning, and the doctors haven’t been able to figure out why yet. She put me on Biotin to hopefully help some, and I may have to see a dermatologist…but that will have to wait. In the mean time, I’m getting my hair cut to make the thinning less obvious. (right now I have to wear my hair in a pony tail, or tied back so it’s not visible.I’m not saying I have a huge bald spot or anything, It looks like I have a wide part trying to go down the back of my head, and I can’t cover it.) So next week, I should have photos of before and after! I plan to get about 10 inches cut off. I’m donating it to Pantene Beautiful Lengths.
The progress with the CI (cochlear implant) is going well. I’m hearing more, but things still sound a bit tinny. I hear best with the CI and my hearing aid at the same time. I’ll see the audiologist and Dr. K. again before I leave for Tucson.
We leave for Tucson, AZ on the 27th. I can’t believe it’s almost here. It’s been months away for so long, now it’s just around the corner! So much to do…actually, my darling husband has done almost everything. He’s a wonder!
One more note about the Botox….as Allison said on her blog about her experience, I’m having less expressions with my eyebrows. I had an appointment with my therapist the other day and she actually noticed my expressions were not quite right. I guess that’s why she gets paid the big bucks (haha) she needs to notice things like that. It was strange to say, oh it’s just the Botox. (she already knew about the treatment).
I’ve had another couple of breakdowns abut Sandy…I think it has actually helped some. To get it out and not hide it, to let people know how very much I’m still grieving. The last time I broke down (I really breakdown, can’t talk, sobbing, shaking all over….ect) Stuart said the wrong thing. He didn’t mean it and thought it was helpful but…he said, “This isn’t helping”. No shit! Well, him saying that actually did help, I got so mad it him it snapped me out of it. He really felt bad…just awful really. I couldn’t stay mad long, but it was a learning experience for both of us.
Sandy is still with me. She always will be. As someone told me, I have a Sandy shaped hole in my heart and nothing will be able to completely fill that shape. I do hope I’m through with the complete breakdowns. No fun, and Stuart is right, it doesn’t help. It actually hurts me physically, then I’m hurting everywhere. My therapist suggested some art about Sandy. I had started some, but haven’t finished it….I have a lot of things I’ve started but haven’t finished (I’ll take photos some time, and you can see the great unfinished works of W. H.)
I’m sure I’m leaving something out….but there is always next time. : )
Where have I been you ask? Or perhaps you haven’t noticed (don’t tell me, I want to think I was missed) I haven’t been commenting as much on other blogs, or chatting away on mine (I know for a while I’ve been a little silent here so you probably didn’t notice), I haven’t even been able to answer emails in a timely manner. I logged on today and I had over 230+ emails in my inbox. Normally there are about 30…so how many days has it been??
I’ve been much sicker, if that’s the word to use, lately. I’m not really sick, it’s my chronic stuff, plus a little oops added in. First I’ll tell about my oops.
I know in my last post 30 things you may not know….. I mentioned how hard it is for me to wash my hair. It’s normally easier in the bathtub than the shower (I’ve fallen too many times in the shower), but I’ve decided that my bathtub is evil. I’ve had heart palpitations in the tub and nearly passed out, I’ve slipped a few times trying to get out, once I smacked my head against the wall. My latest fight with the tub? I pulled the tendons in my left ankle, and knocked everything out of whack on that side from my foot to my lower back, while I was lying in the tub. Yes, I said, LYING IN THE TUB! Only me right? Ok, it was a little more than just lying still. I had scooted down in the tub to rinse my hair, then I pushed with my feet to scoot up – my left foot slipped and went in a direction it shouldn’t have. But I must say, it really didn’t hurt. When I got out of the tub I could stand fine as long as I didn’t go up on my toes. So I’m thinking, no big deal. Then Stuart looked at my ankle and said, “Oh My!”. My ankle was very swollen!! My lower back hurt, but my ankle really didn’t. If you touched the swollen area it hurt, but not much. This happened last Friday night. On Wednesday the swelling was down and I had a massage, she helped the leg and back, but last night my ankle was swollen again. (not that I’ve been on it, I had vertigo all day yesterday so I was in the bed.) So now you know. I am afraid of my tub and shower….makes it pretty hard to keep up personal hygiene, but I manage….thanks to that darling man of mine.
What else had been causing me frustration and just plan fear lately? I was supposed to have the Botox shots for my migraines on the 18th, my doctor was sick and they had to reschedule….they wanted to make the appointment in November! We are leaving for Tucson, AZ the last week on October, we won’t be here in November. So they scheduled it for October 20th…I cried. I had the worst time with migraines this past month. Right before my period started the pain started…they gave me special medication for that time of the month, it didn’t work. I had 15 days out of 20 were spent in a dark room, often without any hearing device on because the light and sound would make me throw up. Throw in some vertigo, and we have a great party going on. Luckily, the appointment has just been changed to October 3rd. This should be during my period, so it will be a real test. Big problem now? If it works I need to have another shot regimen in 3 months, we won’t be here. I’m not sure I can find a neurologist in Tucson who would be willing to see me just once to give me Botox injections. Actually, I doubt I will be able to, so it will be more like 5 months between injections.
Recently I’ve been having more vertigo, and constant disequilibrium. Frankly, it scares me. I’m pretty sure some of this is Cerebrospinal Fluid Pressure. We changed my medication that controls the high pressure to a times released form instead of the kind I have to take numerous times a day (I kept missing one). Since I’ve been on this new version of this medication I’ve been having symptoms like I did when my pressure was too low. I started back on the regular form of the medication yesterday, I hope this really is what’s wrong. Because the vertigo is scary. I’m proud of myself about how much better I’m dealing with it. I don’t panic as much, I’m sure I would if it was a severe attack. My biggest fear I have is that when a severe attack hits it will never end. I’ll give you an example of my days…Yesterday I woke up to the word spinning, slowly, but still spinning…this went on all day. Luckily, I was able to sleep through some of it. Then when it actually got to be bedtime, I couldn’t sleep. So many things going through my head. I kept thinking, something doesn’t add up….but I’m not sure what…at least I finished Uncle Tom’s Cabin…and still laid awake until 5am. Today, I’m not spinning, but I can’t walk straight. I can’t move my head at a normal speed or I will fall down from the disequilibrium. In the past 48 hours, I’ve been to the bathroom once unaided.
OK…I know this is another venting post. But I’m scared. What if the change in medication doesn’t work? Then why is this happening? We’ll figure it out, or I’ll learn to live with it! Right?
The other night I was talking to Stuart and told him that sometimes I envy people who don’t have to feel like I do. Of course, he said that’s natural, part of self-preservation and all that…. I then told him, I would gladly be the only person in the world who had to feel this way if no one else ever did. And I mean it. The thought that others go through this is heart breaking to me.
The Lorax photo from smh.com.au
I do have some good news about my hearing! (unfortunately I had to cancel the last 3 appointments I’ve had with my audiologist because I was too ill to go, so I can’t tell you what she has to say, but I have some Wow! news.) Stuart got The Lorax DVD from Netflix and we curled up in bed and watched it on the computer. I used the direct link cable and linked the computer sound up to my processor. I didn’t expect to hear any better than I hear the TV, I thought I’d mostly read the movie, as usual (thank goodness for closed captioning!), but this was different! I heard the movie!! I heard the characters the way they were supposed to sound! I really heard it all, just right! Isn’t that amazing? That gives me hope that one day my CI will give me sounds that are normal. Right now, I hear better with it than my hearing aid, but sounds are a bit off, however, I understand things more. It’s coming along! And The Lorax is my new best friend!
September 10 -16 is National Invisible Awareness Week – If you’d like to get involved check out the official site.
30 things about my illness you may not know.
(warning, some answers may give too much information, but it’s not detailed)
See, I don’t look sick. This photo was taken in 2009, right before my first ear surgery.
The illness I live with is: The main illnesses I live with are Meniere’s, chronic Migraines, Bipolar I disorder, and chronic hip and pelvic pain. If you are interested in my other illnesses please see the the tab above titled The Ants That Bite.
I was diagnosed with it in the year: I don’t remember any more. I think I was diagnosed with Meniere’s in 2001, Migraines (I’m not really sure, I’ve had doctors tell me on and off since my teens that I have migraines, but they became chronic in my late 20’s…I’m 49 now), chronic hip pain and pelvic pain – they haven’t figured out what is causing all the pain, so no diagnosis. Bipolar I – 1990 then was told they were wrong – re-diagnosed in 1994.
But I had symptoms since: Meniere’s – the first attack I remember was in 1993. Migraines – the first one I remember, I was 11. The pelvic pain – in my early 30’s, in the mid 1990’s. The hip pain – 2008. Bipolar – in my teens.
The biggest adjustment I’ve had to make is:These are a few major ones for me…. Losing my hearing.Not being able to drive. Not seeing my friends like I used to. Realizing that I will never be cured. Not being able to have a sex life without pain. (but I’ve dealt with, or am dealing with all of these. They will not keep me down.)
Most people assume: I can do much more than I can, after all, I don’t “look” sick. And some assume I use my illness to get out of social situations, but honestly I hate being so solitary
The hardest part about mornings are:Never knowing what the day will bring. I often wake up with a blinding headache, I know what that day will bring. But if I wake up feeling decent I never know if I’ll continue to feel that way, or if I’ll be hit with a Meniere’s attack or Migraine. However, I try to make the most out of every day.
My favorite medical TV show is: Ummm, funny, I used to watch some medical TV shows, but I don’t any longer. I think I see too much of the medical community in person.
A gadget I couldn’t live without is:I suppose I could “live” with out most gadgets, but there are some I wouldn’t want to! My Cochlear Implant, I can hear so much more now. My laptop -so many of my friends are in there!
The hardest part about nights are: Trying to sleep, and trying to stay asleep. Fear. Fear of having an attack just as I’m falling asleep (this happens more than I’d like to admit), fear of waking up with a blinding headache……However, each night before I sleep I acknowledge my gratitude for the day, and plan what I’d like to do the next day. I always have hope I will have a good day, and if I don’t I still know I’ll get something out of it.
Each day I take __ pills & vitamins. (No comments, please)18 daily (this included the total number, not different medications), 5 as needed, 4 vitamins daily, and one B12 shot a week.
Regarding alternative treatments I: have tried many, including chiropractic, acupuncture, certain vitamin routines…. I found medical massage helps my migraines and hip pain a lot. I also use a special diet to treat gluten and fructose intolerance.
If I had to choose between an invisible illness or visible I would choose: I don’t think anyone would choose to have an illness, but I’ll deal with the hand I’ve been dealt.
Regarding working and career:I don’t work. I don’t have a career. Takes a lot out of conversations with others. My doctor suggested I look into filing for disability, but I haven’t done it yet.
People would be surprised to know:I often don’t wash my hair for a month or more. Water on my head is a trigger for me, especially if I have to close my eyes. Luckily, my hair is pretty dry, and it’s long so I just tie it back.
The hardest thing to accept about my new reality has been: There are a lot of times I have to say” I can’t” or “no” to people…and to myself.Losing most of my independence. Not being able to drive. And not being able to have a normal sex life.
Something I never thought I could do with my illness that I did was:Find the positive. Become my own advocate.Fire a doctor.
The commercials about my illness:The only one of my illnesses I’ve seen commercials for is Migraines. Commercials are always drug companies wanting you to talk to your doctor about their drug. I’m not comfortable with this, and normally the side effects they list are pretty scary.
Something I really miss doing since I was diagnosed is: I miss being able to go places alone. (the answer to this question changes often, but right now, not being able to go anywhere alone is very difficult.)
It was really hard to have to give up: My hearing. Even with technological help, I have a cochlear implant (CI) and a hearing aid, it is still very hard to hear at times. I know my hearing with the CI will get better, but it has been very hard to loose all my hearing in one ear, and almost all of it in the other. Without technology, I can’t hear anything.
A new hobby I have taken up since my diagnosis is:Blogging. Reading a lot! I’ve always liked to read, but now it’s almost an obsession. (thank you to Kym for my Kindle! Oh. another gadget I wouldn’t want to live without.)
If I could have one day of feeling normal again I would:I would be so very thankful!! Then I’d spend a day pampering my husband, in and out of bed. ; )
My illness has taught me:To be my own advocate. To be more tolerant…I thought I was tolerant before, but I realize I needed a wake up call on that one.That I’m not alone….this one relieves me because I needed to feel that someone understood, but it makes me so sad that others have to go through what I have. And that I can handle much more than I ever thought I could.
Want to know a secret? One thing people say that gets under my skin is:Any form of, telling me I’ll get better. “When you get better….”, “You will beat this….” NO, I won’t. This doesn’t go away. I may be able to find something to make it more tolerable, but it will never go away. And often treatments that work, stop working. I also hate it when people say, “You don’t deserve this” I know they are trying to be kind….but I never thought I deserved this! And one more….”But you look so good.“
But I love it when people:Tell me how they are doing, want my opinion, want to talk to me as a friend…..Don’t get me wrong, I don’t mind if someone asks about my illness, if they are interested and want to know more about it. But, sometimes I feel like people forget I’m anything more than my illness.
My favorite motto, scripture, quote that gets me through tough times is:This may not be the life I expected, so I’m changing my expectations. I don’t know if this is a quote or anything, it’s simply something I thought one day and it has helped me through accepting a lot of things that have had to change.
When someone is diagnosed I’d like to tell them:Often people who have been recently diagnosed find my blog and it scares them, so I start off telling people: Everyone’s journey with Meniere’s is different. Most do not get to the stage I’m at, so please don’t think you are going to lose your hearing….or any number of things I’ve been though. I’m in the very rare group. I let them know there are many treatments to keep Meniere’s under control, and point them to sites and other bloggers who can give a different perspective. Most importantly, I assure them, they are not alone. They can contact me any time, and there are online groups.
Something that has surprised me about living with an illness is:That my husband and I have gotten even closer. Thank you to our therapist, I think having to go to a therapist about all of this surprised me too. I was not handling losing my independence very well, and hubby wasn’t communicating very well. But by going to a therapist we began to communicate out needs much easier, and recognize our needs. Another big surprise is that people will reach out to me. I’m very surprised that I’ve touched people, and made some honest friendships with people I’ve never met.
The nicest thing someone did for me when I wasn’t feeling well was:(This does not include things my husband does for me) Come to visit me. It doesn’t happen often, but I do enjoy other people’s company. I hate that I often have to cancel when someone wants to do something with me. I’m already so isolated, and if I have to cancel people often think I don’t want to see them, or I’m just too much trouble. I don’t blame them, most of my friends have families, and they have to work their schedule around a lot of things. So missing a visit makes it harder to make plans the next time.
I’m involved with Invisible Illness Week because:Because I have more than one. Some people I love and care about have invisible illnesses. We need to let people know we are still people, but don’t judge us by how we look.
The fact that you read this list makes me feel: That you care, and maybe you understand some things about me you didn’t before.
I think I’ll just make a list of things that have been going on, then I’ll expand on them later….with some pictures.
First, the day after I wrote my last post be got a Foster Puppy. (that’s why I promised the next post would be happier.) For 2 weeks, we have the love of a 5 month old lab/Shepherd mix…this is a big puppy. But he was adorable, and we loved spending the time with him, fortunately Max (our cat) did not share our enthusiasm. I’ll write more about that later.
Then I had a migraine that lasted for 5 days without letting up, my meds would take the edge off a little, but not much. I spent those 5 days in our bedroom with blankets on the windows, and the doors closed. Most of the time I also had my hearing devices off. The light and sound was so unbearable. I really hate have hormone headaches. And this month was horrible. The cramps, the ….well you know what happens during that time of the month, but I will say, this was one of the heaviest periods I’ve ever had. I’ve heard that some women right before they start menopause they have worse periods. But I really don’t know about that. I need to look up much more about menopause.
Hearing with my CI is getting better. Stuart and I went to a restaurant that I can never hear in, and I heard the waitress, I ordered for myself! I carried on a conversation! This are still a bit distorted, but I’m beginning to tell male voices from female. Some things sound as they should. More on this later.
Tonight my hubby made homemade chicken soup for me, can you guess why? That’s right, I woke up in the middle of the night last night with a cold. I can’t remember the last time I’ve sneezed so much, and where does all this stuff that’s coming out of my nose come from? Ick! (btw, that’s not a serious question)
I probably have more to tell, but my head is hurting too much now. And I should try to get some rest….and some tea…oh yes, some tea will make it better.
The chicken soup was AWESOME! if you’d like the recipe you can find it here: http://wendycooks.wordpress.com/2012/04/15/the-best-chicken-soup-ive-ever-eaten/
Stuart did change one thing. We just made a huge pot of Chicken Stock, much richer than the broth the recipe makes, so he used that for the liquid. Sure is funny how chicken soup can make a cold sufferer feel so much better.
It has been a very hard week. I won’t go into details as it concerns people in my family, and I won’t talk about my family on my blog again. I’ve been contemplating all week simply closing my blog and disappearing, or making it private. But that’s stress talking, I’ve found so much support here and I want to think I’ve given a lot of support and information here too. Plus I need a place to go and just get it out. Even when I can’t talk about all of it. Let’s just say, it’s settled for now….maybe.
Photo by Vincent Morrison – Manipulated by Wendy Holcombe If photos could show feelings…
On the 15th, I got hit with a huge stessor! I was under extreme stress and confusion for hours. Finally, things were calming down. I was relaxing in bed, tying to breathe in the ill feelings I felt towards me, and breathe out happiness and goodness to all. I decided to have a little pineapple Greek yogurt, with a banana and nuts for desert. It is delicious. Well, what I got to eat of it. Right when Stuart brought me my decadence, I had that Wonky feeling in my head…so I took my pills and hoped it was just a blip on the radar. (Yes I know, how could I think of eating if I was feeling Wonky, but I’ve been having a lot of Wonky spells that just turn into nothing lately.) Unfortunately, before I was even finished with my treat the world was in full spin! This was one of the longest attacks I’ve ever had….and one of the strangest. It was Meniere’s, not vertigo caused by a migraine. I went through all the stages…and all the grossness. (some how while throwing up I bashed my elbow on something, and it has had a knot on it since then. It’s getting better, but I was afraid I had broken it the next day.) Again, all the throwing up and losing all bodily functions. Not being able to lift my head, except to put it in a bucket. (I even threw up on our brand new carpet….not much, thank goodness, but Yuck!)
So the vertigo kept changing speeds, it would be wild, so fast I couldn’t recognize the things spinning by, then it would slow down to the point I thought it was going to stop any second….I even dozed off a few times, just to be jerked awake by vicious spinning again! This went on for over 16 hours. Luckily I didn’t throw up the whole time, I did keep heaving though. Even before I threw up the first time, I would have the worst muscle spasms and just heave, like I had dry heaves, but nothing had started yet. This often happens to me when I have an attack, at he beginning at least, I can’t figure out why. Why does it have to hurt so bad??
Even after the spinning stopped for the next day I kept feeling like they would start back up, I couldn’t walk straight. It was a very rough 2 days.
On Friday I had an appointment with my headache pain specialist (neurologist). I was supposed to get Botox shots for my migraines. Many people have had good results from this procedure. I was a bit nervous, they do 31 shots in your head and neck/shoulder area. Alas, I did not get it done. Once again our insurance did not send a pre-approval, they didn’t deny it, but they didn’t approve it either. Just like with the Cochlear Implant. What a pain in the butt that was. Luckily, they did pay for most of it. They didn’t cover a procedure that cost about $500, testing the device after they hooked it up to me to make sure everything worked right. Can you believe? What if they hadn’t tested it, and later found out part of it wasn’t working? I’d have to go through another surgery to replace it. How bizarre. Stuart called the insurance company on Monday, I have been approved for the procedure, it just seems no one knew it. So now I have to get another appointment with this doctor…..hope it’s soon.
Sunday I had another scare. but not with vertigo. Really I wasn’t scared, it’s happened before, and I’ve been checked out, still it’s uncomfortable and yeah, it’s a bit scary. I had heart palpitations. I figured out why, but it lasted a long time. I wasn’t as careful Sunday about what I ate or drank. I do not drink caffeine very often, and if I do, it’s just a little bit. I also don’t eat much sugar. Well…I wasn’t so bright on Sunday. We were out and I had Mandarin Orange Green Tea, not thinking that Green Tea has caffeine. That would have been fine, but later in the day we were at a store and I started feeling funny, and very thirsty, we couldn’t find anything that didn’t have either caffeine or sugar. I decided to take the caffeine since I wasn’t sure if the sugared drinks had fructose. I only drank about half of the soda. After dinner I decided to have some ice cream we bought, it is Fat Free, and I was thinking Sugar Free too. Not bright. I only had about half a cup, but it was enough. I started feeling strange. I thought my blood sugar had dropped, so I ate some protein. But it didn’t work. I was sitting on the couch watching TV with my hubby and I felt like my heart was going to beat out of my chest. The doctor told me to massage one side of my neck, and it should help, she also said to put something cold on my wrist. Well I did both, for a long time. This lasted longer than I was comfortable with. Finally, things slowed down….and all was alright.
I hate how much I have to watch everything I put in my mouth. It would be difficult enough if that was all I had to deal with, but dealing with all my food issues and my other health issues is hard! I’m dealing with it, and I’m lucky I can eat as much as I can…right? I just need to be more diligent.
Picnic with Ants 