Cough….cough….
To find out more about asthma please click on this picture, or search the internet.
Yes, I am coughing a lot again. I’ve been coughing for quite some time, it got better, but it has gotten worse again. So much so I had a hard time swallowing because my throat has been so raw.
It started getting worse on Friday, I saw the doctor yesterday. She says my Asthma is not uncontrolled. So I’m on a different inhaler for a while, she said I’d probably start to feel better in about 4 days, I know I slept better last night. Thank goodness.
This issue has been causing a lot of symptoms that we thought were from my other illnesses. I have not been getting enough oxygen, they tested it yesterday and it was at 95%, not bad, but not great…..and I wasn’t having an attack, so my oxygen levels will drop a lot during those times. I was also given another test…and frankly I’m not sure what it was called, I had a hard time hearing the doctor, her frequency just wasn’t hitting right. Anyways, the test showed how much air you can expel when you blow out as hard as you can. It was supposed to read 380, the highest I could get it was 300, I had to blow 3 times, and I almost passed out.
So what does this mean? Not getting enough oxygen, and not having my lungs working properly can be causing a lot of my dizziness lately. Especially when I go from sitting to standing. I was getting worried because I can’t walk from one room to the other without getting winded and the room starts to move. I thought the getting winded was because I can’t really do cardio, it hurts my head too much….it raises my CSF pressure. But now I found out that I’m getting winded so easily because I’m not getting enough oxygen. I also found out this is probably why I’m so exhausted and lethargic all the time. I sleep so much, and have no energy to do much of anything except maybe watch TV, and sometimes read. But reading takes comprehension and recall, things I simply haven’t had lately.
Having your oxygen levels just a little bit lower than it should be can really cause havoc. I knew my mother was going through a lot when she had lung cancer, and her oxygen levels were low, but I feel so much more for what she had to put up with. I remember the insurance company not wanting to pay for my mother to have oxygen at home…I don’t remember what level they said she had to have but her’s wasn’t low enough. I can’t imagine losing any more breath than I have and being told I can’t get help. Luckily her doctor called the insurance company and wanted to know how they could say what her patient needed when they aren’t doctors and haven’t examined her. She demanded that my mother get oxygen, and she did. I was impressed with her doctor for that…for some other things, well she took good care of my mother, but she did not handle things well. But that’s for another rant sometime.
So my dear friends, I haven’t meant to stay away so long, or so often. I simply haven’t had the energy. For example, today I woke around 11am, I went back to sleep about 1pm, I woke coughing and sick to my stomach about 3:30pm….it’s now 5pm. It’s the end of the day for most people, and I’ve only been awake for a total of 3 1/2 hours. I will probably stay awake for a few more hours, but I’ll be asleep by 11pm at the latest. You can do the math to see how many waking hours I will have today, it’s too hard for me to think that much.
Update on other things. My darling hubby hasn’t found a job, but he has a phone interview tomorrow, and he had a long talk with a recruiter today (they really think he’d be “perfect” for that job, but we’d have to move to Nashville….if he thinks he’ll be happy, I’ll live anywhere. The big worry he has is leaving me alone all day. He’s worked at home for years now, even before I got sick. I think it will be good for him to get out and go to an office…..I’ll be fine, or I’ll hire someone to come stay with me. Another big worry about Nashville…my doctor’s aren’t there. I’d have to try to find a Neurologist that’s a headache pain specialist because I have to get the Botox shots every 3 months, and I can’t see Stuart taking a day off every 3 months to bring me to Durham. I’d keep my ear doc, after having the second CI implant…..(I still don’t know when, I’ve had to cancel many appointments with him..dang-it.)…I won’t have to see him very often unless something goes wrong. And it just won’t…enough of that!
I mentioned the Botox shots, I got my happy little Botox bee stings on the 7th, and I’m a happy camper! Oh my goodness those things sure do make a difference. I’ve gone from having pretty much, NO, pain free days, to mostly pain free or very low pain days. I’m not afraid I’m going to run out of medication, so I take it earlier and abort the migraine before it takes hold and ruins my life. My doctor also prescribed an NSAID shot that Stuart can give me if I have a really bad headache or have one that last more days. That makes me feel good to know that it’s available. She also prescribed a muscle relaxer….after I asked about it….I feel that my migraines last longer because I tighten up so much during it and just can loosen up even after I’ve taken my migraine meds. She said they do often use that as a cocktail to help. And it has helped! I can’t take pain medication any longer…..unless I want to itch for at least a day. For some reason, I’ve become very sensitive to pain medication. We’ve pretty much tried them all, but since they are mostly all opioids I’m having a lot of the same problems with all of them. And I can’t take NSAIDs by mouth, my tummy does not like them! So that put a big dent in how I could fight my migraines. Now I feel we are on the right track. I hope the Botox last a good while….I don’t want to be bombarded with migraines before it’s time to visit the Botox Bees.
There we have it, an update on my little family……oh Max is doing fine, right now he’s trying to push my laptop off my lap. He loves me so much more when I’m doing something.
What is going on???
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.
Not a Good Day
We’ve been home almost two weeks, it doesn’t feel that long to me. The first few days I felt better, just exhausted, so I rested a lot. Then I started feeling wonky, and having a lot of migraines. Nearly every day I turn to Stuart and say, “It’s not a good day.” The disequilibrium has been so very bad, I’ve only been on the computer once since I’ve been home. (I hope I haven’t had any important emails). When I try to read on the computer I feel car sick. I can’t stay on for very long, but today I’m going to try to do some things, a little bit at a time. I also haven’t been out of bed other than to go to the bathroom except one day, and I didn’t last long. I think I’d try to venture out more if we didn’t have someone staying with us. (our house sitter asked to stay until June 14th, she’s moving then, and Stuart said yes….long story). It terrifies me to have an attack in front of someone other than Stuart, or a doctor. Even doctor’s make me uneasy. So, going downstairs takes a lot of courage right now. (not that she’s here all the time, but I’m still uneasy). Don’t get me wrong, I do like her, but right now I would feel this way about anyone staying here. I’m simply not having good days.
There really isn’t much more to say today, I wanted all to know I’m still alive. I’m going through a time of change. We’ll see where it leads, but Picnic With Ants may change considerably.
I can tell I’m very depressed, and have been for months. Last year was very difficult for me, and the beginning of this year hasn’t been a walk in the park. I see my new psychiatrist on Thursday, I think, I’m anxious to see if she has any suggestions. I’m really tired of doctors telling me that if I could exercise more it would help my moods….well I can’t, so what am I supposed to do?
I have lot’s of doctor’s appointments over the next two weeks. I’m overwhelmed just thinking about it. Hopefully, all will go smoothly.
Thanks for staying around. I feel like I’ve lost so much over the last year…or more… But that’s for another post.
Leaving in a Mini-Van….
don’t know when I’ll be home again… (yes I butchered the song, “Leaving on a Jet Plane”).
We will be leaving Tucson tomorrow, Tuesday, March 19th. I’m very ready to get home and absolutely terrified of the trip! Terror to the point of making me sick. What to do? Oh what to do? I know I’ll be alright no matter what. Stuart will be with me, and he’s just wonderful at handling things when I’m not at my best. I feel so guilty, Stuart has been packing everything and getting food ready, and washing clothes…..yes, he’s been doing everything, as I lay in bed with ice on my head in the dark, trying not to throw up. My stomach hurts so bad I’m getting scared….do I have an ulcer?
OK…now you’ve seen me at my most anxious. Not pretty is it? Getting here wasn’t that bad. I had that horrible cough and every room we stayed it smelled way over fragranced. I’m sure it’s because we have to have a room where pets are allowed, but it kills me! But I didn’t get sick…I mean sick, sick….until we got here. Then I had a horrific attack, in a car! I think that is one of the things that is scaring me the most.
I am ready to go home, or at least I’m ready to leave here. This was one of the most miserable trips I’ve ever been on. Spending the little bit of time, I was able to, with my niece made much of the misery worth it.
I noticed something the last time I was with my niece, I push myself more when she is around. I have a ball with her, but I do more than I normally would…and I pay for it for a few days, however, it’s totally worth it! Her imagination is incredible! I wish I was able to spend more time with her.
I have so many appointments when I get back to NC. First I see my CI (Cochlear Implant) audiologist. I may have mentioned on here that I haven’t been thrilled with my hearing with my CI…but I figured something out! My CI audiologist adjusted things so it would work best with my hearing aid. After all we hear better with two ears. The trouble started when my right ear decided it was going to go defunk since we’ve been here. I can barely hear anything out of my hearing aid…on good days…and it is distorted. So I’ve just been wearing my CI…it wasn’t set up for that, so I’m feeling much better about that. It does look like the second CI will be happening….after all, the hearing aid isn’t doing much.
Second appointment, my therapist. Oh how I look forward to talking to her about this trip, what a let down. Plus, I’m really over loaded with guilt lately. I think I should say…GUILT! Not that it’s justified. Most of it is about things I can’t do anything about. But one big issue I’m having is my grief over Sandy, and my guilt surrounding her death. I simply will never know if I did the right thing, if we could have done more? I simply miss her so much, there still has not been a day since she died that I have not cried. On April 18th it will be a year since I lost my little girl. (funny how we say “lost”, I didn’t lose her, I know where she is…in a little brown box wrapped up in her favorite blankets with her favorite toys and a raw hide) I’ll always love you Sandy girl….but I need some help dealing with the loss of my very best friend.
I’ll also be seeing my Otologist for a CI check up, and to discuss the possibilities of another one.
In May I’ll be seeing my headache pain specialist and get more Botox shots! Yes I’m looking forward to that appointment, too bad it’s so far out.
Some time in there I’ll be seeing my GP, time for blood test, have her check out this cough thing and all that kind of stuff. Including this horrible stomach pain.
So I’m all caught up…I think. Not sure if I’ll be able to do anything on the computer while we are traveling. I know we’ll have Wi-Fi in our rooms, .but don’t know if I’ll feel like looking at the computer.
A little update
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!
Being Sick when you are Chronically Ill
I’m sure it’s not the same for everyone who has a chronic illness, but for me, being sick on top of it is very hard to deal with.
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!!
Grateful during a Rough Year
Buddha, by Wendy Holcombe
So much to be grateful for…
Yesterday Stuart and I were talking and I told him I was grateful for many things this year. He looked at me a but stunned. Yes, it’s been a rough year.
- I was diagnosed with Idiopathic Intercranial Hypertension, this knocked me off my feet for a while, and I got a bit depressed over it…but I’m so very grateful that the medication works!
- I’m still having severe vertigo attacks….but I’ve only had 3 or 4 this year…That’s amazing, and something to be grateful for!
- I have migraines, and migraine associated vertigo – I’m grateful I have a super doctor now who specializes in headaches. I’m also grateful that the vertigo I have with migraines, is not as severe as the Meniere’s vertigo.
- I lost my dearest companion of 19 years….I still miss my Sandy so much every day – but I’m so grateful she did not suffer, and I’m grateful for all the wonderful memories I have of our lives together. “Everybody Loved Sandy”
- I’m grateful my father pulled through a near death experience, and my sister was there to help him.
- I had a very hard time after someone wrote me a note that simply shook my world, and not in a good way. I’m grateful (thanks to studying Buddhism) I can breathe in that hate, and breathe out happiness and love toward others. I’m also grateful that I do not have to send a reply. It’s a rough thing to accept, but some people will not like me, may even hate me, but as long as I still like me, I’m ok.
- I lost my hearing in my left ear as of July last year (2011), and have greatly reduced hearing in my right ear. I’m very grateful for modern technology, with my cochlear implant (received July of this year) and hearing aid I can hear. I may not be able to hear as well, but with the help of technology I am not deaf all the time. I’m so very grateful for this!
- (**a TMI note) I was diagnosed with vulvar vulvodynia, a painful condition of the vulvar region. I’m so grateful that my doctor gave me topical Lidocaine, now my husband and I can have relations with much less pain. (thank goodness there are times my head stops spinning long enough to try this.) : )
- I’m grateful we were able to come to Tucson for the winter. The trip out was not as hard as I expected….Thank Goodness. The time we’ve been here so far has been rough, but I have faith I will feel better and better. I’m so grateful for the beautiful weather we’ve had so far.
- With every challenge I’ve been through this year….and I haven’t mentioned them all….I’m so grateful my husband has been right beside me, holding my hand, being the best advocate for me (he has to make many calls for me since I can’t hear on the phone, he’s a wonder at making doctors understand), he loves me, and thinks I’m so very special. I tear up just thinking about how very lucky I am to have married this wonderful man. (I am most grateful for my husband and our relationship.)
Stuart and me, a couple of years ago.
Every time I look at this photo I can feel the love pour over me.
I’m so very grateful for the love my husband shows me. (photo by Jenn Dorff)
- And last but not least, I’m grateful for my friends. Especially the special people I’ve met through this blog and others. It makes me sad that others have to go through chronic illnesses with pain and suffering, but I’m grateful we can share our experiences with each other and know we are not alone.
There are many other things I could list that I’m grateful for but this post would be very long indeed. This post has made my lightened my heart and helped with things I was coming more and more depressed about, I believe I should take the time to notice the things I’m grateful for much more often.
If you are in the US, may you have a safe and joyous Thanksgiving. (remember, take care of yourself first.) I was not able to partake in the family festivities today, a migraine and unsteadiness simply would not allow it. (especially with all the noise, I admit I was afraid, this would have been the first get together since I got my CI, it’s scary going into a situation with a lot of noise when you can’t hear like you used to.)
May we all remember to take time to think about the things for which we are grateful.
I’m so Grateful for my Emergency Kit!
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.
A cold is not cold, so why do they call it a cold?
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.
Being sick when you are Chronically ill.
image by Fukari on deviantArt.com
People who are chronically ill have to deal with symptoms every day…some days are better, some are worse…but what about when you get sick from something else.
Even a cold can knock me for a loop. There have been many times this year that I’ve felt I’ve had a cold, but it’s only lasted a couple of days. What was that? At least it didn’t last long. I keep thinking it’s probably allergies. Now, I feel like I have a cold…Day 3…perhaps I really do. But ragweed is really blooming here and it’s EVERYWHERE! So maybe??
It doesn’t matter, it’s causing the same symptoms: scratchy throat, more mucus, stuffy ears, a bit of a headache, (but much less than usual when I’m sick). Being sick, when you are already sick can cause all sorts of trouble. My ears are stuffy…not a good thing. I walked in the bathroom night before last and just before I got to the toilet the world moved and my world started to go dark. This is the closest I’ve ever come to taking a complete nose dive straight on the bathroom floor. I held onto the sink for dear life, and started squatting down…thinking if I fall it won’t be as far to fall. I called Stuart and he saved me. It didn’t last long, and I felt a bit guilty for waking Stuart up, but if he hadn’t come I would have been on the floor soon and preventing that is much better than trying to get me up after I fall. He was a dear and stayed right with me.
I’m not sleeping well because of this cold thing…and that’s not good for most chronic illnesses, mine is no exception.
I can say my head has been feeling much better. The day before I started feeling sick, the day was overcast and just yucky. The type of day that normally sends me to bed with a category 8 migraine. I actually went out that day! I did not have a migraine! Unbelievable. So maybe the Botox is working..(crossing fingers and toes). What ever is causing me to have less headaches I’m happy. This week has been nice….as far as the head pain goes. : )
All of this brings me to another question. Sometimes when I have symptoms of getting sick, it mimics symptoms that I get from my chronic illnesses. If you have this problem, how do you tell the difference?
For example, I have a lot of gastrointestinal issues because of the gluten and fructose intolerance. When I have any tummy issues, running to the bathroom sick, I automatically think I must have eaten something I shouldn’t have. or was hit with cross contamination. But, what if it’s really a stomach bug, or worse…food poisoning? I keep thinking it’s my fault, I ate something I shouldn’t have, when I possibly should be heading to the doctor.
Or with my ears. I get off balance, feel like my ears are full…all symptoms of Meniere’s that I have often…but what if I’m getting an ear infection? This has happened numerous times. I end up getting a very bad ear infection because I think the first signs are just my normal stuff.
I don’t really expect any answers. I try my best to be as in tuned with my body as I can, to notice if something isn’t exactly like the usual symptoms, but it’s hard. The thought of going to the doctor and being told it’s nothing just makes me cringe. (but we’ve all had that haven’t we) I think all we can do is try hard to keep ourselves as healthy as we can in spite of our chronic illnesses, and really pay attention when you start to have more symptoms than normal. (doesn’t that sound strange, that we have symptoms that are just every day normal things.)
A little update on other things.
I was supposed to get my hair cut today, but it has been postponed until next Friday. Not that I don’t like my long hair, but it’s thinning, and the doctors haven’t been able to figure out why yet. She put me on Biotin to hopefully help some, and I may have to see a dermatologist…but that will have to wait. In the mean time, I’m getting my hair cut to make the thinning less obvious. (right now I have to wear my hair in a pony tail, or tied back so it’s not visible.I’m not saying I have a huge bald spot or anything, It looks like I have a wide part trying to go down the back of my head, and I can’t cover it.) So next week, I should have photos of before and after! I plan to get about 10 inches cut off. I’m donating it to Pantene Beautiful Lengths.
The progress with the CI (cochlear implant) is going well. I’m hearing more, but things still sound a bit tinny. I hear best with the CI and my hearing aid at the same time. I’ll see the audiologist and Dr. K. again before I leave for Tucson.
We leave for Tucson, AZ on the 27th. I can’t believe it’s almost here. It’s been months away for so long, now it’s just around the corner! So much to do…actually, my darling husband has done almost everything. He’s a wonder!
One more note about the Botox….as Allison said on her blog about her experience, I’m having less expressions with my eyebrows. I had an appointment with my therapist the other day and she actually noticed my expressions were not quite right. I guess that’s why she gets paid the big bucks (haha) she needs to notice things like that. It was strange to say, oh it’s just the Botox. (she already knew about the treatment).
I’ve had another couple of breakdowns abut Sandy…I think it has actually helped some. To get it out and not hide it, to let people know how very much I’m still grieving. The last time I broke down (I really breakdown, can’t talk, sobbing, shaking all over….ect) Stuart said the wrong thing. He didn’t mean it and thought it was helpful but…he said, “This isn’t helping”. No shit! Well, him saying that actually did help, I got so mad it him it snapped me out of it. He really felt bad…just awful really. I couldn’t stay mad long, but it was a learning experience for both of us.
Sandy is still with me. She always will be. As someone told me, I have a Sandy shaped hole in my heart and nothing will be able to completely fill that shape. I do hope I’m through with the complete breakdowns. No fun, and Stuart is right, it doesn’t help. It actually hurts me physically, then I’m hurting everywhere. My therapist suggested some art about Sandy. I had started some, but haven’t finished it….I have a lot of things I’ve started but haven’t finished (I’ll take photos some time, and you can see the great unfinished works of W. H.)
I’m sure I’m leaving something out….but there is always next time. : )
