Did we buy a house built on a burial ground? Are we to be cursed forever? I can have positive thoughts and depression in the same day…..yes I am feeling the bipolar bug a biting.
I wanted to write a memorial anniversary post about Sandy on the 18th, but I was losing consciousness at the headache pain neurologist office because I had such a migraine. I couldn’t even wear my hearing technology, I went in deaf, because sounds hurt so much. I had my sunglasses on and a hat to block out as much light as I could. Stuart took care of everything. I passed out twice, once I didn’t know where I was when I came to….and it had only been seconds. I could barely talk, and I can’t even hear my own voice.
It’s those days that make it hard to find the positive. And to top it off……
Stuart got laid off the day before. Out of the blue. Company got some new investors and started restructuring….’nuf said.
I probably have a ton more to say, I have hit some posts here and there….I’m sorry. I still have 400 emails in my inbox. If you have emailed me…I promise I’ll get to it….or resend it please…who knows what is lost in that pile.
My head is hurting so much.
I must get off the computer. I’m not on here every day. I hope after getting back on Botox on the 7th, it will get better…may take a couple of months of treatments.
thank you all of sending healing thoughts my way. I send out health and wellness thoughts to you all each night. I breathe in your pain and out healthy thoughts.
(oh and don’t worry about the Bipolar Bug…I’m seeing both types of exterminations soon…yes I know it can’t be killed, but they can get it more under control. I don’t want to feel like I’m just waiting to die. But days like my trip to the neurologist, I feel like that….or I did. I’m so confused about feelings right now and I know not to trust them. Also hormonal time…so my emotions are being toyed with…as long as I know this, I can handle it.)
(I wanted a cool graphic for this, but just didn’t feel like drawing….in too much pain.)
Thank you to all who have commented here and I haven’t been to your blog, or at least not very often….I care more than I can say.
I must apologize for being away so long I feel like I’ve just been saying the same thing for so long. I don’t feel good….blah, blah, blah.
Remember in my last post I mentioned having a sore throat? Well I got Thrush, a yeast infection in your mouth and throat. Thrush is often caused by a lowered immune system, and one often gets it when you have been on antibiotics and/or steroids a lot. You may also remember that I mentioned…at least I believe I said it on here, that I wasn’t happy by how often I had been on both antibiotics and steroids since I’ve been in Tucson. So…Thrush. Not fun. First it hurt a lot, was very raw and even looked like it was bleeding, then it turned white. I had white spots all over my mouth, tongue and the back of my throat. I decided to treat it more naturally instead of more medication. I’m taking acidophiles, eating yogurt, and gargling with diluted hydrogen peroxide. (this was the recommendation on the Mayo Clinic site). It gets much better then it seems to get a bit worse again (however, it is much, much better than it was in the beginning), I finally put the connection between how my thrush behaved and how much I had to use my nebulizer….duh, it is a steroid too. So now when I need to use the nebulizer I rinse my mouth well afterward, and gargle with the dilution of water and hydrogen peroxide. I think this is going to work!!
My migraines have been much more present. I’m also having much more vertigo. I think most of it is Migraine Associated Vertigo (MAV). When one has vertigo with Meniere’s it is rotational. Lately I’ve been having vertigo that goes in all kind of directions. Yesterday it was going down….well it’s hard to explain…the room kept sliding down and then it was if it went behind me and would come back around and slide down again. Oh I was so sick…but I didn’t throw up…yay. I did have a lot of acid reflux and burping…and running to the bathroom, which is very hard when you can’t walk alone, and my walker doesn’t fit through the bathroom door. (thank you Stuart, you are the best). With everything that has been happening, all I want to do is sleep. One day I slept 18 hours…it may have been more I’m not sure, I’d wake up when I had to go to the bathroom, and when I was hungry…and that was all. Many days I’m sleeping at least 15 hours. I sleep about 12 hours a night (but I do wake up a lot), and take at least 2 naps. It’s crazy! I’m just falling asleep all the time.
I got a call from the doctor with lab results from my urine….they sent it off to a more advanced lab to see about an infection. It said I didn’t have an infection. So why did it hurt so very bad? And yesterday it started hurting, just a little, again. The doctor suggested I go to a urologist if the pain continues or comes back….I really don’t want to do that in Tucson. We’ll be leaving in less than 3 weeks. I think it will wait until we get home. I’m still passing urine just fine and they found nothing abnormal in it…it’s just painful. Yep, it will wait until I can see my doctors.
I was able to go to my niece’s birthday party on Saturday. I was so excited. But it was soooo hard. It was in a very noisy place, so I started having a sound headache almost immediately. I couldn’t understand what was being said. I don’t think my niece has ever been told about my hearing loss, but when I told her I couldn’t hear well in there she would motion for me to do things she wanted. For example, she wanted me to play one of the games, she gave me a token and pointed to where it went in, then pointed to the button I was to push for the game. It made my heart swell that she was so understanding of my needs. It also breaks my heart when I have to say goodbye to her, every time she will start to cry…but I told her that we were not leaving for long, I’d see her again soon. I hope I can. Her parents aren’t very accommodating.
Let me rewind a little bit…the day before the party Stuart and I went to the mall to get our niece a gift from the Disney Store (she loves the princesses). We didn’t walk around much, but my hips and lower back were in so much pain before we left, it was horrible. It’s really hard to walk much when you have bad hips…and I haven’t seen my massage therapist in a long time. So it was hard for me to stand much at the party. I was happy I was able to go and do a little with our niece, but sad because I couldn’t do as much as I would have liked.
Each night before i go to sleep I think of a post I want to write, then the next day I often just can’t. My migraines are so severe lately that I can’t stand to get on the computer…I can’t stand any light. And of course when I have vertigo, there is no looking at the words on a computer screen…or anywhere else for that matter. I hope to get many of those posts written soon…..here’s a preview….
I was awakened, after being asleep less than 2 hours, by hearing the words: “Ow!, Ow!. Ow!”. Imagine my surprise when I realized the words were coming out of my own mouth. Suddenly I realized just how much pain I was in. My head was at an odd angle and my neck was screaming with pain, my head was throbbing, and my stomach and bladder were causing extreme discomfort. As I hobbled to the bathroom I found the words, “Ow!….” continuing to come from my mouth. (Funny thing, I can’t really hear me say it, but when I woke up it really did sound as if the words were coming from outside my body….strange how deafness works sometimes.)
I stretched my neck and put ice on it and it felt much better, my head was also starting to ease some. The pain in my bladder and stomach were a different story. My stomach literally felt like it was being eaten from the inside out. Over production of acid is not a pleasant feeling. I tried to eat a little something to calm the pain down, I took extra medication for my acid reflux, but it takes time to work. I’ve never had it so bad before, I could not touch my stomach without it causing more pain. I would love to have been able to take Maalox, it was always my go-to fix when my stomach was acting like this, but unfortunately I haven’t been able to find Maalox or any medication like it that I can take, they all have something that will cause my fructose malabsorption to attack. I’m happy to report after a couple of days of a pretty bland diet, and extra acid reflux medication, my stomach is once again pain free…..for now. I do try hard to not eat anything that will cause excess acid production, and I don’t think I did eat anything offending before this, however, stress can also cause excess acid production, and the pain from my bladder was causing me much stress.
When I first saw the doctor here I was having pain in my bladder and she tested my urine and found nothing, I have an irritable bladder and we decided it was just spasming. So when this pain started I thought it may be the same. Unfortunately, this pain kept getting worse and worse. Every time I moved it hurt. Sitting was very painful, so was walking. I’m sure everyone who’s ever had a UTI will also know that I was having to go more than usual, but couldn’t urinate once I got in the bathroom…and it was very painful. All of this started on Sunday, the 3rd, I had just finished my antibiotics and steroids for the bronchitis 2 days before. I couldn’t believe I had an infection again. I upped my already large amount of water I drink, trying hard to flush things out. By Thursday, the 7th, I was convinced it wasn’t irritable bladder talking, something was wrong. So off to see the doctor again. Unfortunately, the doctor I’ve seen before is out on medical leave. (I hope she is alright, I mentioned before that she had pneumonia last month, so I’m a bit concerned.) I saw another doctor in the office. Not someone I really want to see again I felt like he talked down to me, as if I was not able to understand things. Stuart thinks I’m a bit too sensitive, and maybe I am, but this visit started off wrong (and Stuart later told me that he didn’t have a good feeling about this doctor either). I told the doctor I have profound hearing loss and could not hear him. He raised his voice a little, but didn’t look at me when he was talking, it didn’t help when I did see his mouth as he had a lot of facial hair and I couldn’t see his lips well enough. I had to rely on Stuart to tell me what was going on. He asked if I’d been running a fever, I explained that my normal temperature is 97.4F, and it has been around 99F recently. He said, that’s not a fever, everyone fluctuates. (Then why ask me??) I told him about just finishing antibiotics and just couldn’t believe I had an infection so fast….he says that antibiotics don’t stop you from getting something else….but it was the way he said it, as if what I said was stupid. I never said they did, I am just overwhelmed that I’ve been sick so much recently. I asked him about a medication I have for irritable bladder that is expired and wanted to know if I should get a new prescription….he went into this long tirade about how medicines don’t explode after the expiration date, and how there have been studies that medication that hasn’t been opened is good for years after the expiration date. I was so confused at how he was talking to me….and yes I heard most of that. I told him that I know different chemicals have different half-lives, and I didn’t know the half-life of this medication. Well he just went on and on about how drugs are not food and they don’t just lose it because of the expiration date.
He did examine me, but I didn’t feel that he listened to me very much. That’s ok, I talk too much when I’m nervous anyway. He told me my urinalysis was negative, but that could be because I was drinking so much water it caused it to dilute the urine too much. He said I had all the classic symptoms of a Urinary Tract and Bladder infection so he was going to treat me for it. He gave me an antibiotic specifically used to treat this type of infection, and told me if I wasn’t better in 48 hours to call the doctor on call or I could wait until Monday and call him. Yeah, that’s not going to happen if I can help it. I’m feeling better. Not well, but better.
On another note….I’m so very proud of myself today!! I took a bath by myself! I even washed my hair! I haven’t taken a bath or washed my hair without Stuart’s help in a very, very long time. I’m thinking over a year. Don’t worry I wasn’t being irresponsible. Stuart was in the house and on alert for my call. He also just couldn’t stay away the whole time and came in to check on me. But I did fine. A little wobbly, but that often happens with temperature changes (cool room, hot water). Or it just happens any time….heck most of the time…so I’m getting pretty used to it and how to handle it. Being extra cautious, have hand holds, non-slip surface under my feet…..
(at this point I got too hot while writing this and started to feel funny, so I had to put it down. Today, Tuesday February 12th, is the first day I’ve felt like coming back to the computer. I think I’ll end this post here If I start where I left off I’ll be writing another VERY long post….so I’ll have to write more soon)
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.
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.
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.
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.
Picnic with Ants 