I haven’t posted pictures in a while. Thought I’d share a few. I’ll update on me later…..today, scenes from my life.
So there’s a photo catch up for you.
I hope you enjoyed it. A photo can often say more than words, and it seems I’ve been pretty slack at writing words lately.
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.
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 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….
- Photos I haven’t been able to post.
- Chronic Illness and Personal Hygiene
- More about my other chronic illnesses…..
see you soon!
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)
First when you get sick, you often have to distinguish if your symptoms might be from part of your chronic illness or illnesses. That can be very difficult sometimes. I often feel like I’m catching a cold but it goes away in a few days, so for those few days I don’t know if I’m really “sick” on top of things or not. I also have a lot of gastrointestinal issues due to food allergies and intolerances, it’s really hard to know if I have caught a bug or if I simply got a hold of something I shouldn’t have eaten. This can be very disturbing sometimes, and it can make me less likely to seek medical attention for things until it has been going on for a while.
(a lot of this post is a recap of what has been happening with me the past few months. Please feel free to skip this narration, I felt I needed a place to put it all in one place. The major points I want to make are in bold at the bottom. thanks for understanding…and if you read everything, you are an amazing person. *smiles* It took me three days to write this, between feeling icky and having a vertigo spell….so please forgive any errors…grammar, punctuation, spelling, even train of thought…yes brain fog is heavy these days. thank you my dear friends.)
I’ve written about how sick I’ve been over the last few months….I mean really sick, on top of my chronic conditions…what a mess. But I’d like to give you a run down of what happened and how I think I really goofed up and made this hang on longer than it had to.
The third week of October both Stuart and I caught colds, it delayed our leaving for Tucson by a week. At the end of the cold I had this nagging cough hanging on, I’d heard from many people who live near us that they too had been suffering from colds that seemed to hang on for weeks with a cough, so I wasn’t so worried. We started our trek across country, my breathing got worse, especially when we’d stop for the night. I assumed I was having a lot of allergies erupting on top of everything. Often our hotel rooms had a perfume smell, air fresheners, and one smelled like someone broke a bottle of cologne in the bathroom (we did ask to move from that room, but there was a convention in town and no more rooms were available). We would have researched and found more allergy free accommodations for me, but those places would not allow cats, and Max needed a place too. We do however always make sure we have a no-smoking room.
By the time we got to Tucson I was having a very hard time with the cough and breathing issues, but again, thought it was more allergies. I felt that most of the stuff was coming from my nose…but I was wrong, that was only part of it. Soon after we got here I started having severe vertigo attacks…Meniere’s was not kind to me. I know the trip took a lot out of me,and I hadn’t been watching my salt intake as much as I should have..so I just thought my one of my chronic illnesses was in acute mode. I still didn’t think I was really sick, sick. (big mistake) In the back of my head I knew I should go to the doctor for the cough, but I was so busy going to the doctor about my ears….and the holidays were upon us, it’s pretty hard to get in to a doctor as a new patient that time of year…so I thought I’d wait. (again, not a good idea) I continued to get sicker, no energy, coughing more, not being able to take a deep breath…..ect. I did not get to enjoy one bit of the holidays (oh how I wanted a family holiday gathering, but I spent all of it in bed). Finally, I told Stuart to, “Yes, please call and see if you can get me in to see a doctor.” (he’d asked many times before and I said no, really I thought it was allergies, ragweed was in full bloom here when we got here, and the house we are staying in had been empty for a long time so lot’s of dust…I didn’t think the doctor would be able to do much more than I was. Yes, I know…silly girl treating herself, but every spring I have severe allergies at home and I’m put on Flonaze, and 2 antihistamines. So I did that, I was also taking an expectorant to break up the mucus and get it out….really all good things, and the doctor agreed, but I needed more. And the Flonaze was causing me to have miserable nose bleeds. so that stopped.)
First trip to the doctor, (don’t you love a first trip to a new doctor, explaining all the reasons for your medications, all the things you have going on….ugh! She actually said I was a very happy person for having so much going on with me. I thought, well I could show the sad, depressed side of chronic illness all the time, but who would that help? I may be ill, but I’m still a good person.) I found out my minor Asthma (I haven’t had but a few attacks in the past 20 years or more, and only when I’ve been around strong allergens or perfumes.) has turned out to be pretty serious. And I have Bronchitis…the Asthma probably got so bad because of the Bronchitis….and allergens. So antibiotics, and a steroid….call in 10 days if not all better. Stuart called after about 7 days because I was worse. Ironic thing…my doctor had just gotten out of the hospital with pneumonia. Actually scared me a bit, what if I had pneumonia…many of the symptoms were there, even the cold chills. But then I laughed at myself…I had the pneumonia vaccine in May, I had to have it before I could get my Cochlear Implant. (that’s what I get for trying to diagnose myself with just the internet. We can get some clues from there, but I’ve learned never to think it’s absolutely true for me. Always consult a professional, or two.) So I saw my doctor again on the 21st, 2 weeks from the first appointment. Still not breathing well…ect, and my sinuses really hurt. Diagnosis? Still Asthma is going crazy, now bronchitis is considered chronic, and I have a sinus infection. I was given a stronger antibiotic, prednisone (oh joy, more steroids), and I had a breathing treatment in the office with a nebulizer, for the first time in months I could breath, it lasted for hours, I was thrilled. I was told if the cough was not much, much better in 3 days to call back and I would get a nebulizer for home. But that night I started coughing so hard I pulled a muscle in my back. I couldn’t walk without being in severe pain, putting weight on my left leg was almost intolerable. Thank goodness for my walker, but darn the fact that I haven’t found a bathroom door that my walker will fit through! So, I could get from the bed to the bathroom, then hobble inside. What a mess. I didn’t sleep that night, stayed on heat and ice, and luckily the next day it was much better. I still rested with ice and heat to insure it got even better, but I could walk with minor discomfort.
So…yesterday Stuart called the doctor’s office…after 3 days, to tell them I need a nebulizer. (really, I can get a nebulizer, I need the medicine that goes in it) Unfortunately, they close early on Friday, and didn’t get the prescription called in before the end of the day…so I have to wait until Monday.
Another thing that I’m having trouble with. Migraines! Did you guess? I had very good results from the Botox injections, but they have worn off…I am looking forward to March 7th, when I can see my neurologist at home and have the injections again. (deep sigh) I’m having a hard time with pain medication. I was taking Hydrocodone, but it started making me itch, I’m allergic to Codeine (at least I’m told I am, I had the allergic reaction when I was pretty young, I don’t remember, but why would it be wrong?), Oxycodone makes me stop urinating, I’m allergic to Celebrex (I know this one is right, I have the ER trips to prove it.), and all NSAIDS hurt my stomach (thanks to an old doctor who had me taking Ibuprofen by the handfuls). Before I left N.C. my neurologist put me on Tramadol (Ultram), well it makes me itch too! So I’m stuck without a pain reliever stronger than Tylenol. It’s been rough. (I do still have other migraine meds, but sometimes you need a pain reliever…when I pulled that muscle it would have come in very handy!)
This post has become MUCH longer than I’d planned. I needed to put all of this in one place, and I wanted to make a point…but I think my point may have gotten lost. Here’s the summary of what I’d like for you to take from this post:
- When you are Chronically Ill, you need to pay close attention when you get sick. Do not assume it’s your “normal” ill feelings.
- Do not put off going to the doctor, if you don’t have anything worse than a cold, what did it hurt? (Yeah, our doctors may think we come in too often, but really if our doctor thinks that we should probably find a new doctor.) I’m sure we often feel we go to the doctor too much, but don’t play around with your health. Don’t be scared because if you are out of town and not close to your doctor. Who knows a fresh pair of eyes may be helpful in many ways.
- Often when you have a Chronic Illness you have less resistance to fight off sicknesses, like the “common” cold, than healthy people. I know my body works over time just to take care of me with my chronic illnesses, throw in getting sick and there just isn’t enough resistance in me to put up a good fight. I should have known better, and gone to the doctor sooner.
So the biggest point I want to make. Know your body. Know how you feel on a day-to-day basis, if you get sick, pay very close attention and take care of you. You are the only one who can say if you need to see a doctor. But don’t be like me, please see a doctor before things escalate into a more serious sickness.
I know I will always listen closer to my body than I have the past few months. Just because there are other things going on in my life doesn’t mean my symptoms aren’t something I should pay attention to!!
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.
This is the third attempt at writing this post.
So I shall not try to explain things, or guess at things, I’m just going to tell what is happening.
Vertigo!!! Nearly constant. mini spins, mid-line spinning, and horrendous attacks. When I was diagnosed with Meniere’s I was told it could be one of the worst things you can get that won’t kill you, but you may wish it would.
For the past few weeks, I wish it would.
I’m so miserable. I can’t walk without aid, and then it’s very difficult. I often can’t move my head without going into a full swing. Right now I’m having a decent moment, so I’m trying to write.
I’m scared. I went to a doctor here, and he thinks it’s allergies. (I’m not so sure, I take 3 different meds for my allergies.) He put me on steroids and gave me drops to reduce the inflammation. No infection was seen. I feel have been worse since starting the medication. I’m supposed to see him again on Friday, the 21st, but Stuart is calling him tomorrow.
I can’t be left alone. We are having a hard time. Stuart needs to leave to go grocery shopping and such, but it’s almost impossible. He left for a bit last night to shop, and I ended up spinning and terrified. I called him, but of course I could hear when he answered, I just kept saying help. He found me in a lump on the floor. I know it scared him as much as it did me. I am not prepared to take care of these attacks by myself. I know I have, but it is terrifying even with help.
We came to Tucson hoping I would feel better here. Oh how wrong I was! I never thought I would feel worse! The same maybe, but not worse. I’ve seen family once the whole time we have been here. I haven’t seen any friends. I’m just so sick. I often can’t even move my head.
I want to be home where my doctors are. I don’t know if Tucson is doing this to me, or if it would have happened any way, but either way, I want my doctors! But now, I don’t know how we would get home. Riding in a car is torture. I can only imagine what riding in a plane would be like. I often can’t lift my head without spinning very fast.
So that’s all I can write for now.
I made a huge mistake, I should never have left NC. Having family and friends close here is nice, we do have some people we can call on…but this is new to them, how long would the charity last? At home we don’t really have a support system….but I have my doctors….and that’s important! If I could have the support from those here, and my doctors in the same place, I would be a much happier person.
Anyone reading this who are close to us now. Stuart could really use some help….it’s hard for him to admit, but he is overwhelmed by all of this, I can tell.
(also my migraines are back with a vengeance. I think the Botox has worn off. It really seemed to help for a while!)
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.)
- 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.