Under Pressure….CSF pressure Up – Down – who knows.
The Headache, by Kamshubel (from DeviantArt.com
In my last post I talked a bit about my headaches, and the Cerebral Spinal Fluid (CSF) being a bit out of control. So let me give you a run down of how things have been going. It will be pretty short, but at least I’m posting, right?
I had my Botox shots on April 7th, after about a week they started to really work. My headaches lessened in both frequency and intensity.
Then I had the mishap with my medication on May 25th…or sometime around there. I got all of that straight, and started taking my Diamox religiously. I have a separate box just for it with 4 pills in each slot, then I can just look in and see how many I’ve taken at any given time. All good there…at least I thought it was.
About this time I started my period and the weather went wild, storms every day, the humidity and barometric pressure all over the place – a perfect storm for a migraine. For 2 weeks I had a horrible headache every day, sometimes my migraine meds worked, sometimes they didn’t. The headaches kept changing intensity. One moment I would be around an 8, it would drop to a 4, then back up again…all within minutes. I was so confused. Then one day about a week ago I realized my headache felt better if I was up, as soon as I lay down, BAM, the pain would assault me again. This could only mean I had high pressure. But I will admit I felt better than I had for a while, since I could get up and move around with relatively no pain. I was still taking my medication exactly as prescribed. The next day I awoke with very little pain, until I got up. The world spun and suddenly I had a headache so bad I nearly blacked out. Dang-it! Low pressure again. We are pretty sure I had a blow out, and my pressure dropped drastically. So for the past week, I’ve been back on my back. I need help walking to the bathroom. Night before last I had an attack, it was different from most. I did not have true vertigo, I constantly felt like I was going to, I had light vertigo for a while but mostly I only spun when I moved my head. (Yes, it’s pretty hard to not move your head, especially since I had to go to the bathroom often during this time) I was sooooo very nauseous. I wanted to throw up just to make it stop. I had spasms in my stomach like I was throwing up, but nothing came. I could feel the gorge in my throat, but it didn’t come out. This was very painful. This went on for a little over 6 hours! I took everything I could to try to stop it. The nausea was so horrible. I took the pills for it and suppositories. Nothing was working. And I would love to know why, when I have an attack (and I’ve heard others say this about Meniere’s attacks too) do I have to go to the bathroom so much? My dear husband was so wonderful, but I kept getting so confused and I’d start to cry a little because I couldn’t understand him. He was a dear about it all, and stayed up with me…he never left my side except to get me more ice. (I forgot to mention, my Tinnitus has been going Crazy! So loud! I had a piercing sound the other night and told Stuart my brain was having an Emergency Broadcast Signal!)
Now, I have super-duper headaches. Today, it doesn’t seem to matter if I’m up or down, it still hurts. My migraine meds are working a little. (the Toradol shot did little to help, it’s usually magic in relieving my migraines). I will see my headache pain specialist on Monday, hopefully this will be over by then, but I hope they can tell me what the heck has been going on!
On a better note: My asthma is much better. I still have coughing fits, especially after I eat, but they are less frequent and less severe. I’m so relieved about this.
My goal lately has been to laugh at least once a day. Stuart’s a great help with that, he often makes me laugh….and Max is good for it too. Right now he’s loving on my laptop so hard it’s about to fly off my lap. It really is funny when he comes up to me when I don’t have my Cochlear Implant on and Meows at me. I just see his little mouth open and close, no sound…Stuart says he does it often to me and I don’t even notice. Poor Max. I promise he does get a lot of attention. I think even more than I do! haha
I’ve written numerous posts in my head, but haven’t been able to write them. I have tried, but my brain gets confused or my head starts hurting too much. I wrote one and tried to read it over and got so confused. I am not reading this one, so forgive me if it repeats a lot, has a lot of grammar mistakes, spelling mistakes, or simply doesn’t make much sense. You are free to ask me to clarify anything.
Me So Stoopid!
I know I’m having a hard time with cognitive issues lately. I can’t remember a lot, and there are times I’m just confused. I should have taken precautions because of this…but I didn’t even think about it.
I goofed on my medication. Don’t say it…I do have a medicine box….and Stuart fills it for me lately because I’m so wonky in the head, however, I always take my Diamox (the medicine that keeps my CSF lower) at a different time than the rest of my meds. I take one as soon as I wake up, even if I’m going back to sleep, I need to keep the night and morning dose less than 10 hours apart. I also take my night dose just as I’m going to go to sleep…..again to keep not too many hours between them. If I don’t I get a blinding headache when I wake up. I also take one in the afternoon….I don’t take any other med in the afternoon, so I don’t have a 3 slot box….just AM and PM. (I hope that makes sense)
OH, I should say….I take one in the AM, one in the afternoon, and 2 at night. (the 2 at night helps stop the headache thing)
Well yesterday, and I’m not sure I didn’t mess up the night before too….I just don’t know, I tell you I’m confused…and it’s worse now. But, yesterday morning I took 2 instead of 1…..my CSF (cerebrospinal fluid) dropped, too low. So I stayed in bed lying flat trying to keep my pressure as even as I could. Not a good day. I did not take my afternoon dose, and I thought that would be it. I went one over, so taking one less should make it right. Ummmm, nope. I took 2 at bed time, and I got so sick! I had a headache at an 8 on a scale of 1 – 10. Luckily, my migraine meds and ice on my head lessened the headache…but I was swimmy headed (as my mother used to say), and very nauseous. And so confused. I will lie here and think, “why am I here?, what am I supposed to be doing?, why does my head hurt? why is the roaring in my ears so LOUD?…” I start to get to get all teary because I’m just so off…..it’s very hard to explain. I feel lost and very anxious about it.
image from, http://confusedcartoon.blogspot.com/
This morning I woke up and felt great! For the first time in months. Stuart was still asleep and I actually pondered going downstairs and making him breakfast, but didn’t know when he’d wake and wanted him to sleep as long as he could….he’s been feeling a bit run down…I wonder why? Then I got up! Oh no, I would not be trying to navigate the stairs today, I wouldn’t be doing much, but lying flat….again. Damn. I was so happy when I woke up, but that bubble busted pretty fast. I was so ticked off, then Stuart pointed out….how many days have you woken up feeling good lately? None….for a LONG time. So even that is a victory. We’ll get this medication mix up straightened out. (he will be giving me that medication from now on, or until I stop feeling so wonky in the head anyway.)
FYI – Speaking of Stuart…..he has had one or two phone interviews and has more lined up….and possibly an in person interview soon. Most local. I don’t think we will have to move…but if we do, we’ll handle it. As long as we’re together.
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.
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!
“Ow! Ow! Ow!”
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)
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!!
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. : )
Not Just for Wrinkles….
Botox is now used to treat migraines. I know you saw me post that I was getting my shots on October 3rd….and I did…more in a moment. However, isn’t it amazing that Botox will help migraines? Or at least I hope it will. I’ve been reading about it, and it seems to, I know someone who has been getting the shots for a while now and she has had wonderful results.
Botox is for people who have tried many other treatments but still have 15 or more migraines a month. In trials it prevented about 9 of those headaches. Having half as many migraines as i do now would be amazing. However, I also read that people who took the placebo reported having 7 fewer migraines a month….a difference of 2…not so great.
There are a number of side effects you could have, but I haven’t noticed anything. On the Allergan site (they make Botox, I found that funny since they are known for contact lens stuff) it says, “It may take several weeks to see a response. In clinical trials, patients showed a response at their 4-week evaluation. After 2 treatments (at 24 weeks), BOTOX® was proven to reduce headache days each month.” I was told by my doctor (and I know others have been told this too by their doctors) that you will notice a difference in 4-7 days, normally about a week. I hope the doc’s right, I’m ready for relief. Also, considering I won’t be able to get my second injection for about 5 months I might have waited until then for my first treatment if it takes 2 treatments to be proven to reduce the number of headaches each month. (We will be in Tucson, AZ for the winter, so I can’t get my next injection until March 7th).
I’ll keep you updated on how my headaches are doing. Allison, from Taking Life for a Spin, recently had her first treatment and after about a week she reported she couldn’t lift her eyelids. You can check out her story here: Unresponsive Eyebrows.
So, how did the treatment feel you ask…what exactly did they do???
I had 31 injections….here are photos from the Allergan site showing the injection sites. One of mine was a bit different, Cochlear Implant in the way.
Forehead injection sites
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
Injection sites sides.
This was a bit different on my left side due to my CI.
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
injection sites Occipital
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
Injection sites back of head and shoulders
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
What did it feel like? My doctor told me it would feel like little bee stings. Well I’ve only had big bee stings so it was much less painful that I thought it would be. The needles are tiny, but the solution does sting a bit, and some of these areas were pretty sensitive on me, but it wasn’t bad. I’d do it again. : ) It went really quick, my doctor really knew what she was doing, just a few minutes and it was done. I spent much more time waiting on her to come in the room. : )
So like little bee stings, yeah, but remember I got stuck by the whole hive! hahaha. No…I promise it wasn’t bad at all, it was nothing like some of the other procedures I’ve had!!
After I got the Botox injections, I also got an injection for the migraine I had right then. (one that had been going on for nearly 2 weeks) So after my visit we got a bite to eat and I came home and slept for 6 hours! What a way to spend the day…a good way actually. The shot in the butt helped my head pain, and he shots in my head will hopefully help me to have less head pain, and I had a good 6 hours of sleep straight through. I did feel like I wasted the day, then I thought, “What else would I have done?”
Oh….I forgot the funny part of the story! But beware…this is Way Too Much Information!
I had been having cramps and all the symptoms of having a period, with no period, for over a week. That morning I woke up and felt fine, I thought….hmmm, guess I’m not having a period this month. (I am 49, I’m expecting to start skipping some periods) So I got dressed, and left for the doctor’s, we get half way there and I’m hit with a horrible cramp. I thought….no, no, no…I didn’t bring a thing. Of course, when we got to the office I go to the rest room and yep, I started. Well, If you are a woman, I’m sure you’ve all had this happen at some point in your life, and what do you do? No dispenser on the wall….so…Toilet Paper to the rescue…and pray it’s good enough for the time being. So I went and waited and waited for the doctor, and had all my shots and 2 hours later we were leaving…and I forgot, yes, I forgot about my makeshift protection. So we go out to eat lunch, and go home and I walk in the door and remembered. How could I have forgotten?….well the shot could have had something to do with it, but, but, ewwww. Luckily, it wasn’t that bad. But I will never again assume I’m not having a period!! Lesson learned!
A Realization
For months now…oh about six…I haven’t had the desire to do much. Blogging always helped me deal with things and I’ve found support here I never thought possible…but I just haven’t felt like it. I’ll think about blog posts, write them in my head, but then in the day I don’t get out my computer and get in touch with the world. I keep thinking I’m snapping out of it, and I am better…and I do think I’m pulling myself out of this depression now, but it was there sitting on my shoulder, whispering in my ear “What’s the point?”
It’s almost 6 months since Sandy died, and I’ve been consumed with grief and guilt. I know I don’t have a reason to feel guilty, but all the “should have, would have, could have” questions kept swimming around in my head. Those kind of questions don’t do any good at a time like this, but they’ve been surrounding me…all the “What if’s…”
Sandy….Happy Dog!.
I still expect to see her, and occasionally, out of the corner of my eye, I could swear she was there. I will feel her on the bed, and nothing is there. There have been times I could have sworn I heard her. (Now I wonder how many times I heard noises and thought they were her and they were something else?)
A lot of people would not understand this deep grief I feel for the loss of my dog. But she was more than just a dog to me…she was a constant companion for 19 years, my Baby Girl, my Sugar Plum Fairy…or as Stuart would call her, our “Stinky Dog”. No Sandy wasn’t a Stinky dog. It is a term of endearment from my husband, if he makes up a little song about you and it says you are stinky then he must love you dearly.
Stuart and (his Stinky Dog) Sandy (taken early April 2012)
Because of this lack of understanding, and the feeling within myself that I shouldn’t feel like this still, I’ve been feeling very alone with these emotions. I hid a lot of it from Stuart for a while, but recently I haven’t been able to.
Two nights ago, I had a complete breakdown. Nothing sparked it, nothing. I was just about to doze off, and it started. I ended up crying (read sobbing uncontrollably) for almost two hours. Since then I have felt a release. I’m still crying over her, but something broke during that night of gut wrenching sobbing. I feel freer from the guilt than I have, I feel like I can move on….that doesn’t mean I’m forgetting my dearest Sandy Girl and everything she means to me, but I hope it means I can begin to see the sun again. I’m kicking that little guy off my shoulder, he will no longer be able to whisper those disparaging words to me. I love Sandy, and always will. I know I did the best I could for her, even if i do question that sometimes. More so, I question if the vet did the best she could have done for her, but I need to let that go too. (However, Max has a new vet now.)
Sandy and Max checking on me in bed.
I know she was 19 1/2. That’s amazing I’m told. But just days before she died she was chasing the cat, curling up with me, and just such a happy dog. I remember how every time she ate her dinner she wagged her tail the whole time. I need to think more about the good memories, and remove the shroud that has been over me holding in just the memories of her last days. Sandy brought me too much love to dwell on the tragedy of her death.
I won’t make promises that I will be here more often, but I think I will be….I need to get back to my friends, and managing my life, instead of allowing it to manage me.
(there may be many errors in this post, I just can’t read it again right now.)
