Cough….cough….
To find out more about asthma please click on this picture, or search the internet.
Yes, I am coughing a lot again. I’ve been coughing for quite some time, it got better, but it has gotten worse again. So much so I had a hard time swallowing because my throat has been so raw.
It started getting worse on Friday, I saw the doctor yesterday. She says my Asthma is not uncontrolled. So I’m on a different inhaler for a while, she said I’d probably start to feel better in about 4 days, I know I slept better last night. Thank goodness.
This issue has been causing a lot of symptoms that we thought were from my other illnesses. I have not been getting enough oxygen, they tested it yesterday and it was at 95%, not bad, but not great…..and I wasn’t having an attack, so my oxygen levels will drop a lot during those times. I was also given another test…and frankly I’m not sure what it was called, I had a hard time hearing the doctor, her frequency just wasn’t hitting right. Anyways, the test showed how much air you can expel when you blow out as hard as you can. It was supposed to read 380, the highest I could get it was 300, I had to blow 3 times, and I almost passed out.
So what does this mean? Not getting enough oxygen, and not having my lungs working properly can be causing a lot of my dizziness lately. Especially when I go from sitting to standing. I was getting worried because I can’t walk from one room to the other without getting winded and the room starts to move. I thought the getting winded was because I can’t really do cardio, it hurts my head too much….it raises my CSF pressure. But now I found out that I’m getting winded so easily because I’m not getting enough oxygen. I also found out this is probably why I’m so exhausted and lethargic all the time. I sleep so much, and have no energy to do much of anything except maybe watch TV, and sometimes read. But reading takes comprehension and recall, things I simply haven’t had lately.
Having your oxygen levels just a little bit lower than it should be can really cause havoc. I knew my mother was going through a lot when she had lung cancer, and her oxygen levels were low, but I feel so much more for what she had to put up with. I remember the insurance company not wanting to pay for my mother to have oxygen at home…I don’t remember what level they said she had to have but her’s wasn’t low enough. I can’t imagine losing any more breath than I have and being told I can’t get help. Luckily her doctor called the insurance company and wanted to know how they could say what her patient needed when they aren’t doctors and haven’t examined her. She demanded that my mother get oxygen, and she did. I was impressed with her doctor for that…for some other things, well she took good care of my mother, but she did not handle things well. But that’s for another rant sometime.
So my dear friends, I haven’t meant to stay away so long, or so often. I simply haven’t had the energy. For example, today I woke around 11am, I went back to sleep about 1pm, I woke coughing and sick to my stomach about 3:30pm….it’s now 5pm. It’s the end of the day for most people, and I’ve only been awake for a total of 3 1/2 hours. I will probably stay awake for a few more hours, but I’ll be asleep by 11pm at the latest. You can do the math to see how many waking hours I will have today, it’s too hard for me to think that much.
Update on other things. My darling hubby hasn’t found a job, but he has a phone interview tomorrow, and he had a long talk with a recruiter today (they really think he’d be “perfect” for that job, but we’d have to move to Nashville….if he thinks he’ll be happy, I’ll live anywhere. The big worry he has is leaving me alone all day. He’s worked at home for years now, even before I got sick. I think it will be good for him to get out and go to an office…..I’ll be fine, or I’ll hire someone to come stay with me. Another big worry about Nashville…my doctor’s aren’t there. I’d have to try to find a Neurologist that’s a headache pain specialist because I have to get the Botox shots every 3 months, and I can’t see Stuart taking a day off every 3 months to bring me to Durham. I’d keep my ear doc, after having the second CI implant…..(I still don’t know when, I’ve had to cancel many appointments with him..dang-it.)…I won’t have to see him very often unless something goes wrong. And it just won’t…enough of that!
I mentioned the Botox shots, I got my happy little Botox bee stings on the 7th, and I’m a happy camper! Oh my goodness those things sure do make a difference. I’ve gone from having pretty much, NO, pain free days, to mostly pain free or very low pain days. I’m not afraid I’m going to run out of medication, so I take it earlier and abort the migraine before it takes hold and ruins my life. My doctor also prescribed an NSAID shot that Stuart can give me if I have a really bad headache or have one that last more days. That makes me feel good to know that it’s available. She also prescribed a muscle relaxer….after I asked about it….I feel that my migraines last longer because I tighten up so much during it and just can loosen up even after I’ve taken my migraine meds. She said they do often use that as a cocktail to help. And it has helped! I can’t take pain medication any longer…..unless I want to itch for at least a day. For some reason, I’ve become very sensitive to pain medication. We’ve pretty much tried them all, but since they are mostly all opioids I’m having a lot of the same problems with all of them. And I can’t take NSAIDs by mouth, my tummy does not like them! So that put a big dent in how I could fight my migraines. Now I feel we are on the right track. I hope the Botox last a good while….I don’t want to be bombarded with migraines before it’s time to visit the Botox Bees.
There we have it, an update on my little family……oh Max is doing fine, right now he’s trying to push my laptop off my lap. He loves me so much more when I’m doing something.
Leaving in a Mini-Van….
don’t know when I’ll be home again… (yes I butchered the song, “Leaving on a Jet Plane”).
We will be leaving Tucson tomorrow, Tuesday, March 19th. I’m very ready to get home and absolutely terrified of the trip! Terror to the point of making me sick. What to do? Oh what to do? I know I’ll be alright no matter what. Stuart will be with me, and he’s just wonderful at handling things when I’m not at my best. I feel so guilty, Stuart has been packing everything and getting food ready, and washing clothes…..yes, he’s been doing everything, as I lay in bed with ice on my head in the dark, trying not to throw up. My stomach hurts so bad I’m getting scared….do I have an ulcer?
OK…now you’ve seen me at my most anxious. Not pretty is it? Getting here wasn’t that bad. I had that horrible cough and every room we stayed it smelled way over fragranced. I’m sure it’s because we have to have a room where pets are allowed, but it kills me! But I didn’t get sick…I mean sick, sick….until we got here. Then I had a horrific attack, in a car! I think that is one of the things that is scaring me the most.
I am ready to go home, or at least I’m ready to leave here. This was one of the most miserable trips I’ve ever been on. Spending the little bit of time, I was able to, with my niece made much of the misery worth it.
I noticed something the last time I was with my niece, I push myself more when she is around. I have a ball with her, but I do more than I normally would…and I pay for it for a few days, however, it’s totally worth it! Her imagination is incredible! I wish I was able to spend more time with her.
I have so many appointments when I get back to NC. First I see my CI (Cochlear Implant) audiologist. I may have mentioned on here that I haven’t been thrilled with my hearing with my CI…but I figured something out! My CI audiologist adjusted things so it would work best with my hearing aid. After all we hear better with two ears. The trouble started when my right ear decided it was going to go defunk since we’ve been here. I can barely hear anything out of my hearing aid…on good days…and it is distorted. So I’ve just been wearing my CI…it wasn’t set up for that, so I’m feeling much better about that. It does look like the second CI will be happening….after all, the hearing aid isn’t doing much.
Second appointment, my therapist. Oh how I look forward to talking to her about this trip, what a let down. Plus, I’m really over loaded with guilt lately. I think I should say…GUILT! Not that it’s justified. Most of it is about things I can’t do anything about. But one big issue I’m having is my grief over Sandy, and my guilt surrounding her death. I simply will never know if I did the right thing, if we could have done more? I simply miss her so much, there still has not been a day since she died that I have not cried. On April 18th it will be a year since I lost my little girl. (funny how we say “lost”, I didn’t lose her, I know where she is…in a little brown box wrapped up in her favorite blankets with her favorite toys and a raw hide) I’ll always love you Sandy girl….but I need some help dealing with the loss of my very best friend.
I’ll also be seeing my Otologist for a CI check up, and to discuss the possibilities of another one.
In May I’ll be seeing my headache pain specialist and get more Botox shots! Yes I’m looking forward to that appointment, too bad it’s so far out.
Some time in there I’ll be seeing my GP, time for blood test, have her check out this cough thing and all that kind of stuff. Including this horrible stomach pain.
So I’m all caught up…I think. Not sure if I’ll be able to do anything on the computer while we are traveling. I know we’ll have Wi-Fi in our rooms, .but don’t know if I’ll feel like looking at the computer.
I got lost!
Flying Brain – photo from deviantArt.com created by Pixelnase
Throughout my journey having chronic illnesses I’ve fought hard to not allow my illnesses to define me. Yes they are a part of me, but they aren’t all of me. I worked hard to keep some sense of normalcy in my life…and to try my best to keep true to me.
I feel after everything that happened this past year….and not all of them had to do with my illnesses…I lost myself. I became the sick person. I stopped trying to be me. I stopped posting regularly, I stopped doing my art, I stopped cooking (partially because I had a dizzy spell while cooking and almost hurt myself, but I’ve been to scared to start back)….I’ve been living in fear and self loathing.
2012 was one of the hardest years I’ve lived through, (topped only by 1993, the year my mother died). I had 2 new chronic diagnoses, my dearest friend and constant companion of 19 years died (yes I am talking about Sandy), I had contact from someone I’ve loved unconditionally who I haven’t heard from in years and the correspondence was filled with hatred….just true and deep rooted hatred. It would be hard enough for me to deal with anyone hating me, but this person….well the wound cut deep. It’s so hard to explain. I don’t remember a lot of my life before I got my bipolar stable, and I’ve changed so much since I met and married my husband, and since I’ve been sick. I love me…me as a person.
But me as a person was lost. I didn’t realize it until we came to Tucson and I got so sick. Not just my normal chronic illnesses, but more and more. I had a cough that wouldn’t go away…I’m still coughing some. I finally saw the doctor, and I had bronchitis and Asthma. I was born with Asthma, so I’ve known it was there, but supposedly I’d “grown out of it”. I would have an attack if I got around someone with perfume on, or someone smoking, or around things I’m allergic to. But now, I’m dealing with it every day. And unfortunately, I had more vertigo attacks in November than I had the entire year combined. I’ve also been having a huge problem with my GI system. I know my food issues and I’m careful, but things sneak in….and I had no idea….still I’m having bowel issues. And I’m gaining weight. I’m back to being 5 pounds from my largest weight. And that’s way too much for my short body.
It has just been too much. More illnesses. More conflicts to deal with. More being stuck in bed. I got lost and didn’t even know it.
I was lying in bed recently and realized how much I hate me. No, I don’t hate me as a person, I actually like the person I’ve become. Adversity really does create good people. (and I think I am a good person) But, me…my body….I hate it. I’m larger than I want to be, or should be. I have no energy, I’m sick ALL THE TIME! I feel my body betrayed me. And I don’t want anyone to see me when I’m ill. When I do actually get to see someone, I try my best to look my best. I know this probably causes a bit of confusion for people, I don’t look sick when they see me, so how can I be so very sick. I remember one day when friend came to visit with her 2 children. I loved seeing them, but I started to feel very worn out and dizzy before they left. I tried so hard not to let them see. Soon it was time for them to leave, Stuart and I walked them to the door, arm in arm….and when the door was closed, I collapsed. But I couldn’t let her see. I think I’m afraid if people see how sick I am they will shun me, and I will lose all my friends. But really, I think I’ve lost most of them anyway. I’ve hidden away. And I don’t think I could stand for someone to see me really sick. I’d rather be with just Stuart than for others to feel uncomfortable because I’m sick. Gaining weight hasn’t helped. People expect sick people to be underweight. Instead I’ve gained about 60 pounds.
So, now that I know what has been happening to me, I am determined to get me back. The inner me. My blog was very important to me, but I allowed someone to scare me away from it. I can’t do that. I have to write and reach out to those who can help me and those whom I may be able to help. This is such an important part of me. My art has been an important part. I wanted to have something I did consistently….but I’ve failed…I need to get that back. I need to do something that is productive and useful. I’ve felt like a useless burden for too long. I found out about a few charities in my area who knit or crochet blankets, scarves….ect….for needy. One charity that really spoke to me is one that donates to foster children, so they will have something special that was made just for them. (as many of you may know, Stuart and I had planned to be foster parents but ended up not being able to because my illness got so much worse). Foster children hold a special place in our hearts. The charity I found makes items for foster children in a neighboring county, at some point I would like to see the same type of charity started for the county we live in.
So here’s the beginnings of a plan for me. Begin doing something that will make me feel more like I’m a contributing member of society, learn to love my body no matter what size it is or how sick it is, stop listening to old ghost from the past and hope they can move past their hate and find a happy life, learn more about dealing with my new diagnoses, and learn American sign language.
I didn’t mention, I haven’t been able to hear out of my right ear…with my hearing aid…for about a month. So we really need to learn ASL. We will be starting a class here in Tucson next week. It is a beginning conversation ASL class. We will miss the last couple of classes, but feel it will be worth while. This is through a Hard of Hearing and Deaf group, many of the members are deaf or severely hard of hearing, so I shouldn’t have a problem with not being able to hear in class. (Stuart talked to the teacher and she assured him it wouldn’t be a problem, and many people who have Cochlear Implants are members there too.
Grateful during a Rough Year
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.
Going…Going…Gone!
We are finally getting on the road to Arizona. We leave for Tucson tomorrow…so no we aren’t gone yet.
and neither is that stupid cold. I’m sure the virus is gone, but some of the symptoms are still here. Mostly a cough. Oh how I hope it’s gone before we get to Tucson, the last time I was there I had a cough from a bad cold, people thought I was dying….or very contagious. I don’t want hubby’s family to think I have a chronic cough…for years!
So what is Gone? My hair. Yes, I had 14 inches cut off yesterday. You read right, 14 inches! Stuart took pictures, and I promise I will post them, as soon as I can get them off his phone. We are just so busy trying to finally get out of this house and on the road, that’s on the back burner right now. (my hair is now just above my shoulders…or right on them) I look like a different person!
I know I’ve been missing in action for a bit. I’m sorry. When I’m feeling icky, I don’t really like to be on the computer. I was feeling overwhelmed every time I looked at my email.
Today I just wanted to touch base with my lovely friends….and anyone who happens to drop by for a read. I’ll give you the update from the doc and audiologist on my Cochlear Implant soon.
This overwhelms me too. so much I want to share, but what to tell first? I don’t want you to have this long post to sort through, but do I tell you what has happened most recently, or what happened before that I still haven’t shared.
I guess it will just come as it comes. If I could just get back on track with posting I wouldn’t have this problem.
sending a wish for a happy day to all
Being sick when you are Chronically ill.
image by Fukari on deviantArt.com
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. : )
Migraines, Vertigo, Disequilibrium, Pain – mix and repeat often
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!
I can’t believe it’s been so long…..
There is so much to tell, where do I start?
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.
A Day of Wonders (Cochlear Implant activation)
Tuesday, July 31st, I woke up to this beautiful site:
Tulips from my hubby! What a wonderful surprise!!
I had an appointment with Dr. Kaylie to check my incision at 1pm, and then I saw the audiologist immediately afterward.
Dr. Kaylie was pleased that I didn’t have as much pain or vertigo with this surgery. The incision looked great, and all was a go for activation….well, to get my processor. Dr. Kaylie already checked to make sure the Implant was working when I was in surgery, so that wasn’t a worry. The implant was already working, but I couldn’t hear anything without the processor. It was time to get the processor. So off to see Sara, my audiologist.
It was very interesting to have the processor hooked up. At first I just heard a series of beeps, (that’s what I was supposed to hear). She was determining the volume each frequency should be. Then I was able to hear speech, and when I first heard her talk I busted out laughing! She sounded like a cartoon, then I heard Stuart speak, and he sounded like a cartoon…heck, I sounded like a cartoon. I kept giggling every time someone spoke. Everyone still sounds cartoonish. A very silly cartoon, like on Rodger Rabbit. It’s amusing but also quite difficult. Sara reassured me that all of her patients tell her that it gets better, but everyone is different. My brain has to be trained to hear a different way. Now I’m not hearing as a normal person, I’m hearing by having my auditory nerve stimulated. That kind of blows my mind. (I know my hearing will get better and better as time goes on, but I also know I may never hear like normal ears hear any longer.)
You would not believe how much stuff I got with my processors. Two HUGE boxes full of stuff.
These are the boxes all the parts came in. The coffee cup is in the picture to show scale. It’s a regular sized coffee mug.
This is some of the pieces for the Harmony processor. Yes lot’s of extra stuff. I’m so confused by how I’m going to organize all of this stuff….just look there’s even more in the next box…and this doesn’t include things I’m using, like the processor, and the battery chargers…ect.
This is some of the items that came with the Neptune processor. This is the processor that can be waterproof, and it clips on instead of going behind the ear….but all this stuff, I have to figure a way to organize it, and understand it all. : )
I was joking in the last picture, I was shown what everything did, I just need to work with everything to make sure I understand how it works without anyone telling me, or me having to look it up. Especially all the connections to hook the processor straight up to the iPod, or things like that. The different ear hooks for different things with the Harmony. All the accessories just to make it different looking and some to clip the Neptune on to me, like an arm band and a lanyard…ect.
I have a drying box to keep the processors free of dampness. Each processor came with one, but I like one better than the other. There are different carrying cases, but neither will help organize all the pieces. I feel like I got some very useful items, some fun items, and some useless items. But it’s been like Christmas for a couple of days just playing around with all the pieces and figuring out how to wear them.
Here’s some photos of me with my CI hooked up with the different processors :
Me with the Harmony processor on….I was playing around with the different colored pieces you can snap on to it. The part that hooks to my head….by a magnet…that’s green, I have that in white, black, red, brown, and light brown….and of course lime green. Where the blue is, I have some funky snap on parts there, they are all silly – stars, rockets, rainbows…ect. Or I don’t have to wear one and it will be a light brownish beige.
This is the Harmony from the side. I have the larger battery on the processor in this photo, so the back part (where the blue is snapped on) is longer than it is with the smaller battery. Of course the larger battery last longer than the shorter one….about 4-5 hours longer I think.
This is me with the Neptune on. I just clipped it to my shirt to show what it looks like. When it is waterproof, it’s actually smaller (you take the controller off, so you can’t change the volume or anything when you are swimming, but who would have time?)
Please excuse the way I look. No makeup, in a sloppy t-shirt…and taking photos of myself. How atrocious! haha
So there you have it. Me and my Cochlear Implant with the 2 processors I picked out.
Remember, picking out a processor is a very personal thing. I would never say mine is the best, if you are getting a cochlear implant, do as I did, read up as much as you can on all the ones available, then decide which one will fit in you the best.
Also. Everyone has different experiences with their CI. I’m hearing words, some people do not hear words when it is first turned on. Others hear words that are much clearer than what I am hearing. Some of it depends on how long you have been deaf, I don’t know the other factors…I just know we are different. So don’t think my experience is the same experience you will have.
The wonders continue!
OH….I did hear my cat purr last night, and it sounded like purring! I was thrilled! The one sound I’ve had a hard time getting used to is my own breath. I feel that’s strange….hopefully I’ll get used to it soon. Breathing shouldn’t be this loud….should it? I’m sure it’s something that will end up just going into the background. I remember when I got my hearing aids the sound of my hair brushing against them drove me crazy….later I didn’t even notice it.
Photo Op! Cochlear Implant
Getting Prepped for Surgery. (photo by Stuart Holcombe)
My Surgeon’s Signature. Marking which ear they will be operating on. (photo by Stuart Holcombe)
I’m a FALL RISK! When you have Meniere’s as a diagnosis, you are pretty much so labeled a FALL RISK. Funny, I don’t really see where they do anything different. I did get an escort to the bathroom, but if I had fallen, she wouldn’t have been able to hold me up! I think I’ll keep the bracelet and just keep putting it on when I go to Duke, no sense in wasting them. : ) (photo by Stuart Holcombe)
At home, tucked in my bed with Monkey after surgery. Sorry photo is a bit dark, but I didn’t have time to adjust it.
photo by, Stuart Holcombe
Taken 7/23/2012 – The oily part and yellow part is the stuff they put on the protect the wound until it has healed enough….I get to wash my hair on Thursday. I do not have any stitches to take out, all will dissolve. (photo by Stuart Holcombe)
Another view of incision. It was hard to get my hair in this position to show how much was shaved. It is very easily covered up.
photo by Stuart Holcombe
