I was awakened, after being asleep less than 2 hours, by hearing the words: “Ow!, Ow!. Ow!”. Imagine my surprise when I realized the words were coming out of my own mouth. Suddenly I realized just how much pain I was in. My head was at an odd angle and my neck was screaming with pain, my head was throbbing, and my stomach and bladder were causing extreme discomfort. As I hobbled to the bathroom I found the words, “Ow!….” continuing to come from my mouth. (Funny thing, I can’t really hear me say it, but when I woke up it really did sound as if the words were coming from outside my body….strange how deafness works sometimes.)
I stretched my neck and put ice on it and it felt much better, my head was also starting to ease some. The pain in my bladder and stomach were a different story. My stomach literally felt like it was being eaten from the inside out. Over production of acid is not a pleasant feeling. I tried to eat a little something to calm the pain down, I took extra medication for my acid reflux, but it takes time to work. I’ve never had it so bad before, I could not touch my stomach without it causing more pain. I would love to have been able to take Maalox, it was always my go-to fix when my stomach was acting like this, but unfortunately I haven’t been able to find Maalox or any medication like it that I can take, they all have something that will cause my fructose malabsorption to attack. I’m happy to report after a couple of days of a pretty bland diet, and extra acid reflux medication, my stomach is once again pain free…..for now. I do try hard to not eat anything that will cause excess acid production, and I don’t think I did eat anything offending before this, however, stress can also cause excess acid production, and the pain from my bladder was causing me much stress.
When I first saw the doctor here I was having pain in my bladder and she tested my urine and found nothing, I have an irritable bladder and we decided it was just spasming. So when this pain started I thought it may be the same. Unfortunately, this pain kept getting worse and worse. Every time I moved it hurt. Sitting was very painful, so was walking. I’m sure everyone who’s ever had a UTI will also know that I was having to go more than usual, but couldn’t urinate once I got in the bathroom…and it was very painful. All of this started on Sunday, the 3rd, I had just finished my antibiotics and steroids for the bronchitis 2 days before. I couldn’t believe I had an infection again. I upped my already large amount of water I drink, trying hard to flush things out. By Thursday, the 7th, I was convinced it wasn’t irritable bladder talking, something was wrong. So off to see the doctor again. Unfortunately, the doctor I’ve seen before is out on medical leave. (I hope she is alright, I mentioned before that she had pneumonia last month, so I’m a bit concerned.) I saw another doctor in the office. Not someone I really want to see again I felt like he talked down to me, as if I was not able to understand things. Stuart thinks I’m a bit too sensitive, and maybe I am, but this visit started off wrong (and Stuart later told me that he didn’t have a good feeling about this doctor either). I told the doctor I have profound hearing loss and could not hear him. He raised his voice a little, but didn’t look at me when he was talking, it didn’t help when I did see his mouth as he had a lot of facial hair and I couldn’t see his lips well enough. I had to rely on Stuart to tell me what was going on. He asked if I’d been running a fever, I explained that my normal temperature is 97.4F, and it has been around 99F recently. He said, that’s not a fever, everyone fluctuates. (Then why ask me??) I told him about just finishing antibiotics and just couldn’t believe I had an infection so fast….he says that antibiotics don’t stop you from getting something else….but it was the way he said it, as if what I said was stupid. I never said they did, I am just overwhelmed that I’ve been sick so much recently. I asked him about a medication I have for irritable bladder that is expired and wanted to know if I should get a new prescription….he went into this long tirade about how medicines don’t explode after the expiration date, and how there have been studies that medication that hasn’t been opened is good for years after the expiration date. I was so confused at how he was talking to me….and yes I heard most of that. I told him that I know different chemicals have different half-lives, and I didn’t know the half-life of this medication. Well he just went on and on about how drugs are not food and they don’t just lose it because of the expiration date.
He did examine me, but I didn’t feel that he listened to me very much. That’s ok, I talk too much when I’m nervous anyway. He told me my urinalysis was negative, but that could be because I was drinking so much water it caused it to dilute the urine too much. He said I had all the classic symptoms of a Urinary Tract and Bladder infection so he was going to treat me for it. He gave me an antibiotic specifically used to treat this type of infection, and told me if I wasn’t better in 48 hours to call the doctor on call or I could wait until Monday and call him. Yeah, that’s not going to happen if I can help it. I’m feeling better. Not well, but better.
On another note….I’m so very proud of myself today!! I took a bath by myself! I even washed my hair! I haven’t taken a bath or washed my hair without Stuart’s help in a very, very long time. I’m thinking over a year. Don’t worry I wasn’t being irresponsible. Stuart was in the house and on alert for my call. He also just couldn’t stay away the whole time and came in to check on me. But I did fine. A little wobbly, but that often happens with temperature changes (cool room, hot water). Or it just happens any time….heck most of the time…so I’m getting pretty used to it and how to handle it. Being extra cautious, have hand holds, non-slip surface under my feet…..
(at this point I got too hot while writing this and started to feel funny, so I had to put it down. Today, Tuesday February 12th, is the first day I’ve felt like coming back to the computer. I think I’ll end this post here If I start where I left off I’ll be writing another VERY long post….so I’ll have to write more soon)
First when you get sick, you often have to distinguish if your symptoms might be from part of your chronic illness or illnesses. That can be very difficult sometimes. I often feel like I’m catching a cold but it goes away in a few days, so for those few days I don’t know if I’m really “sick” on top of things or not. I also have a lot of gastrointestinal issues due to food allergies and intolerances, it’s really hard to know if I have caught a bug or if I simply got a hold of something I shouldn’t have eaten. This can be very disturbing sometimes, and it can make me less likely to seek medical attention for things until it has been going on for a while.
(a lot of this post is a recap of what has been happening with me the past few months. Please feel free to skip this narration, I felt I needed a place to put it all in one place. The major points I want to make are in bold at the bottom. thanks for understanding…and if you read everything, you are an amazing person. *smiles* It took me three days to write this, between feeling icky and having a vertigo spell….so please forgive any errors…grammar, punctuation, spelling, even train of thought…yes brain fog is heavy these days. thank you my dear friends.)
I’ve written about how sick I’ve been over the last few months….I mean really sick, on top of my chronic conditions…what a mess. But I’d like to give you a run down of what happened and how I think I really goofed up and made this hang on longer than it had to.
The third week of October both Stuart and I caught colds, it delayed our leaving for Tucson by a week. At the end of the cold I had this nagging cough hanging on, I’d heard from many people who live near us that they too had been suffering from colds that seemed to hang on for weeks with a cough, so I wasn’t so worried. We started our trek across country, my breathing got worse, especially when we’d stop for the night. I assumed I was having a lot of allergies erupting on top of everything. Often our hotel rooms had a perfume smell, air fresheners, and one smelled like someone broke a bottle of cologne in the bathroom (we did ask to move from that room, but there was a convention in town and no more rooms were available). We would have researched and found more allergy free accommodations for me, but those places would not allow cats, and Max needed a place too. We do however always make sure we have a no-smoking room.
By the time we got to Tucson I was having a very hard time with the cough and breathing issues, but again, thought it was more allergies. I felt that most of the stuff was coming from my nose…but I was wrong, that was only part of it. Soon after we got here I started having severe vertigo attacks…Meniere’s was not kind to me. I know the trip took a lot out of me,and I hadn’t been watching my salt intake as much as I should have..so I just thought my one of my chronic illnesses was in acute mode. I still didn’t think I was really sick, sick. (big mistake) In the back of my head I knew I should go to the doctor for the cough, but I was so busy going to the doctor about my ears….and the holidays were upon us, it’s pretty hard to get in to a doctor as a new patient that time of year…so I thought I’d wait. (again, not a good idea) I continued to get sicker, no energy, coughing more, not being able to take a deep breath…..ect. I did not get to enjoy one bit of the holidays (oh how I wanted a family holiday gathering, but I spent all of it in bed). Finally, I told Stuart to, “Yes, please call and see if you can get me in to see a doctor.” (he’d asked many times before and I said no, really I thought it was allergies, ragweed was in full bloom here when we got here, and the house we are staying in had been empty for a long time so lot’s of dust…I didn’t think the doctor would be able to do much more than I was. Yes, I know…silly girl treating herself, but every spring I have severe allergies at home and I’m put on Flonaze, and 2 antihistamines. So I did that, I was also taking an expectorant to break up the mucus and get it out….really all good things, and the doctor agreed, but I needed more. And the Flonaze was causing me to have miserable nose bleeds. so that stopped.)
First trip to the doctor, (don’t you love a first trip to a new doctor, explaining all the reasons for your medications, all the things you have going on….ugh! She actually said I was a very happy person for having so much going on with me. I thought, well I could show the sad, depressed side of chronic illness all the time, but who would that help? I may be ill, but I’m still a good person.) I found out my minor Asthma (I haven’t had but a few attacks in the past 20 years or more, and only when I’ve been around strong allergens or perfumes.) has turned out to be pretty serious. And I have Bronchitis…the Asthma probably got so bad because of the Bronchitis….and allergens. So antibiotics, and a steroid….call in 10 days if not all better. Stuart called after about 7 days because I was worse. Ironic thing…my doctor had just gotten out of the hospital with pneumonia. Actually scared me a bit, what if I had pneumonia…many of the symptoms were there, even the cold chills. But then I laughed at myself…I had the pneumonia vaccine in May, I had to have it before I could get my Cochlear Implant. (that’s what I get for trying to diagnose myself with just the internet. We can get some clues from there, but I’ve learned never to think it’s absolutely true for me. Always consult a professional, or two.) So I saw my doctor again on the 21st, 2 weeks from the first appointment. Still not breathing well…ect, and my sinuses really hurt. Diagnosis? Still Asthma is going crazy, now bronchitis is considered chronic, and I have a sinus infection. I was given a stronger antibiotic, prednisone (oh joy, more steroids), and I had a breathing treatment in the office with a nebulizer, for the first time in months I could breath, it lasted for hours, I was thrilled. I was told if the cough was not much, much better in 3 days to call back and I would get a nebulizer for home. But that night I started coughing so hard I pulled a muscle in my back. I couldn’t walk without being in severe pain, putting weight on my left leg was almost intolerable. Thank goodness for my walker, but darn the fact that I haven’t found a bathroom door that my walker will fit through! So, I could get from the bed to the bathroom, then hobble inside. What a mess. I didn’t sleep that night, stayed on heat and ice, and luckily the next day it was much better. I still rested with ice and heat to insure it got even better, but I could walk with minor discomfort.
So…yesterday Stuart called the doctor’s office…after 3 days, to tell them I need a nebulizer. (really, I can get a nebulizer, I need the medicine that goes in it) Unfortunately, they close early on Friday, and didn’t get the prescription called in before the end of the day…so I have to wait until Monday.
Another thing that I’m having trouble with. Migraines! Did you guess? I had very good results from the Botox injections, but they have worn off…I am looking forward to March 7th, when I can see my neurologist at home and have the injections again. (deep sigh) I’m having a hard time with pain medication. I was taking Hydrocodone, but it started making me itch, I’m allergic to Codeine (at least I’m told I am, I had the allergic reaction when I was pretty young, I don’t remember, but why would it be wrong?), Oxycodone makes me stop urinating, I’m allergic to Celebrex (I know this one is right, I have the ER trips to prove it.), and all NSAIDS hurt my stomach (thanks to an old doctor who had me taking Ibuprofen by the handfuls). Before I left N.C. my neurologist put me on Tramadol (Ultram), well it makes me itch too! So I’m stuck without a pain reliever stronger than Tylenol. It’s been rough. (I do still have other migraine meds, but sometimes you need a pain reliever…when I pulled that muscle it would have come in very handy!)
This post has become MUCH longer than I’d planned. I needed to put all of this in one place, and I wanted to make a point…but I think my point may have gotten lost. Here’s the summary of what I’d like for you to take from this post:
- When you are Chronically Ill, you need to pay close attention when you get sick. Do not assume it’s your “normal” ill feelings.
- Do not put off going to the doctor, if you don’t have anything worse than a cold, what did it hurt? (Yeah, our doctors may think we come in too often, but really if our doctor thinks that we should probably find a new doctor.) I’m sure we often feel we go to the doctor too much, but don’t play around with your health. Don’t be scared because if you are out of town and not close to your doctor. Who knows a fresh pair of eyes may be helpful in many ways.
- Often when you have a Chronic Illness you have less resistance to fight off sicknesses, like the “common” cold, than healthy people. I know my body works over time just to take care of me with my chronic illnesses, throw in getting sick and there just isn’t enough resistance in me to put up a good fight. I should have known better, and gone to the doctor sooner.
So the biggest point I want to make. Know your body. Know how you feel on a day-to-day basis, if you get sick, pay very close attention and take care of you. You are the only one who can say if you need to see a doctor. But don’t be like me, please see a doctor before things escalate into a more serious sickness.
I know I will always listen closer to my body than I have the past few months. Just because there are other things going on in my life doesn’t mean my symptoms aren’t something I should pay attention to!!
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. : )
It has been a very hard week. I won’t go into details as it concerns people in my family, and I won’t talk about my family on my blog again. I’ve been contemplating all week simply closing my blog and disappearing, or making it private. But that’s stress talking, I’ve found so much support here and I want to think I’ve given a lot of support and information here too. Plus I need a place to go and just get it out. Even when I can’t talk about all of it. Let’s just say, it’s settled for now….maybe.
On the 15th, I got hit with a huge stessor! I was under extreme stress and confusion for hours. Finally, things were calming down. I was relaxing in bed, tying to breathe in the ill feelings I felt towards me, and breathe out happiness and goodness to all. I decided to have a little pineapple Greek yogurt, with a banana and nuts for desert. It is delicious. Well, what I got to eat of it. Right when Stuart brought me my decadence, I had that Wonky feeling in my head…so I took my pills and hoped it was just a blip on the radar. (Yes I know, how could I think of eating if I was feeling Wonky, but I’ve been having a lot of Wonky spells that just turn into nothing lately.) Unfortunately, before I was even finished with my treat the world was in full spin! This was one of the longest attacks I’ve ever had….and one of the strangest. It was Meniere’s, not vertigo caused by a migraine. I went through all the stages…and all the grossness. (some how while throwing up I bashed my elbow on something, and it has had a knot on it since then. It’s getting better, but I was afraid I had broken it the next day.) Again, all the throwing up and losing all bodily functions. Not being able to lift my head, except to put it in a bucket. (I even threw up on our brand new carpet….not much, thank goodness, but Yuck!)
So the vertigo kept changing speeds, it would be wild, so fast I couldn’t recognize the things spinning by, then it would slow down to the point I thought it was going to stop any second….I even dozed off a few times, just to be jerked awake by vicious spinning again! This went on for over 16 hours. Luckily I didn’t throw up the whole time, I did keep heaving though. Even before I threw up the first time, I would have the worst muscle spasms and just heave, like I had dry heaves, but nothing had started yet. This often happens to me when I have an attack, at he beginning at least, I can’t figure out why. Why does it have to hurt so bad??
Even after the spinning stopped for the next day I kept feeling like they would start back up, I couldn’t walk straight. It was a very rough 2 days.
On Friday I had an appointment with my headache pain specialist (neurologist). I was supposed to get Botox shots for my migraines. Many people have had good results from this procedure. I was a bit nervous, they do 31 shots in your head and neck/shoulder area. Alas, I did not get it done. Once again our insurance did not send a pre-approval, they didn’t deny it, but they didn’t approve it either. Just like with the Cochlear Implant. What a pain in the butt that was. Luckily, they did pay for most of it. They didn’t cover a procedure that cost about $500, testing the device after they hooked it up to me to make sure everything worked right. Can you believe? What if they hadn’t tested it, and later found out part of it wasn’t working? I’d have to go through another surgery to replace it. How bizarre. Stuart called the insurance company on Monday, I have been approved for the procedure, it just seems no one knew it. So now I have to get another appointment with this doctor…..hope it’s soon.
Sunday I had another scare. but not with vertigo. Really I wasn’t scared, it’s happened before, and I’ve been checked out, still it’s uncomfortable and yeah, it’s a bit scary. I had heart palpitations. I figured out why, but it lasted a long time. I wasn’t as careful Sunday about what I ate or drank. I do not drink caffeine very often, and if I do, it’s just a little bit. I also don’t eat much sugar. Well…I wasn’t so bright on Sunday. We were out and I had Mandarin Orange Green Tea, not thinking that Green Tea has caffeine. That would have been fine, but later in the day we were at a store and I started feeling funny, and very thirsty, we couldn’t find anything that didn’t have either caffeine or sugar. I decided to take the caffeine since I wasn’t sure if the sugared drinks had fructose. I only drank about half of the soda. After dinner I decided to have some ice cream we bought, it is Fat Free, and I was thinking Sugar Free too. Not bright. I only had about half a cup, but it was enough. I started feeling strange. I thought my blood sugar had dropped, so I ate some protein. But it didn’t work. I was sitting on the couch watching TV with my hubby and I felt like my heart was going to beat out of my chest. The doctor told me to massage one side of my neck, and it should help, she also said to put something cold on my wrist. Well I did both, for a long time. This lasted longer than I was comfortable with. Finally, things slowed down….and all was alright.
I hate how much I have to watch everything I put in my mouth. It would be difficult enough if that was all I had to deal with, but dealing with all my food issues and my other health issues is hard! I’m dealing with it, and I’m lucky I can eat as much as I can…right? I just need to be more diligent.
Well that’s all for this past week.
I promise my next post will be on a happier note.
I got this idea from one of my favorite bloggers LinLori.
I know many of you probably have questions for me, about my Cochlear Implant, any of my health issues…..ranging from Bipolar I to Chronic Pelvic Pain….and the newest diagnosis I haven’t even mentioned here yet….Vulvar Vestibulitis. You may want to ask how I deal with certain things (like grieving for Sandy), or about my relationship with my husband. You may even want to ask about my food issues. Or what my favorite things are….whatever….I’m here to answer your questions. If I possibly can.
You all know I’m an open book…I don’t mind telling the details…so if you want to know something, now is the time to ask!
Come on ask….you know you want to know.
I’m sorry to my followers, my friends, that I have not been around much. I am a bit overwhelmed by so much that has been going on that I haven’t told you about, and I’ve been sucked into a depressive state. I keep trying to pull out of it, I even have a new medication, but I’m still just blah. I wake up in the morning, and often feel awful for the first hour or two, it takes me a while to feel like a real person, then when I actually feel alright, I think what reason do I have to get out of bed?
I don’t find pleasure in the things I used to be so passionate about, like art, cooking, blogging….ect. I do still find pleasure in reading, perhaps it is an escape? I also still find pleasure with my husband, just being next to him makes me feel better.
I will be seeing my psych. tomorrow, I’ll discuss this with him, and we’ll see if I should increase the antidepressant I’m on, or try something else. I’m sure he can help pull me out of this.
If you have been reading my blog for a while, you know that I’m normally very positive. This turn of emotions has hit me like a wall, I don’t feel like myself. I need to get my positive outlook back.
The ironic thing about this, I’m actually much better. I have the weird feelings when I first wake up, but I think that’s because I’ve been horizontal for so long that my cerebrospinal fluid raises a bit, and I have to sit up for a while, and take my medicine before I feel better.
I’m still having migraines, but they aren’t as intense. I’m still having Migraine Associated Vertigo (MAV), but not as often, and when I do it doesn’t last as long. Maybe I’m just getting the medication in faster, all I know is it’s better. I’m still having chronic migraines though, yes they are better, but they still knock me out of commission for a while, so my doctor is starting a new treatment plan. We want to get it where I’m having much fewer migraines, not just less intense.
No Meniere’s vertigo!
My surgery has FINALLY been scheduled! July 19th, I will receive my bionic ear! (my implant is from Advanced Bionics…so I can literally say I will have a bionic ear!) Two weeks after surgery they will turn on the cochlear implant. (I wrote a post telling all about the processors I chose, but that’s the one WordPress deleted half of, so I need to finish it again…I will try to do that soon, so you can see what will be hooked to the side of my head. I’m sure you are all eager to see that! : ) Just wait until you see it actually on my head!
Other things that have been happening: We got new carpet. We replaced our worn out couch. We had our mattress replaced under warranty…it wouldn’t bounce back. So the house is full of chemical smells, and I’m so sick! I keep trying to stay in rooms with less chemical smells, but I’m still coughing so much my throat is sore, my head hurts, I’m so tired all the time….ect. I’ll be so happy when I can breathe in my own house again!
Tell me is it normal to feel down when you start feeling better? Yes, I’m feeling better but not to the point that I can do everything I want. Since I feel better, I’ve begun to resent that I can’t drive, I can’t have that independence. I hate that Stuart has to be with me for me to leave the house. I know with the uncertainty of vertigo it’s even dangerous for me to walk around the block by my self. I resent that I have to be careful of all the food that I eat. We took a little trip this weekend, and it was so very hard to find food that I could eat. I felt horrible, every time we wanted to eat it was such an ordeal. It’s not so bad locally, we know places that are safe, but I didn’t think about not being able to find safe food on the road. We tried so hard to make sure everything I ate was safe for me, but still I got sick. On the way home we had to stop numerous times so I could run to the bathroom. I was so embarrassed to have that happen in a public restroom. eww.
I used to find it a challenge and a pleasure to cook even with my restrictions. I thought it was interesting to figure out how to change a recipe so I could eat it. Now I resent that I can’t eat some things. That I can’t cook whatever I want. I don’t like this feeling.
Oh, I almost forgot, I had a birthday. July 2nd! My husband is a dear man, he celebrated my birthday for 4 days, and I’m getting my main present today! So, still celebrating… he’s done something sweet for me every day since Friday! He really made up for the one time he forgot my birthday! haha Funny thing, I thought I was turning 50 this year. Stuart and I were walking along one day last month and mentioned my birthday, I said that this one was a big one, he asked why 49 was big for me, I said, “No, I’ll be 50!” He looked at me, and said “No Wendy you will just be 49″. I was sure I was going to be 50! He said, “What year is it?” I said, 2012….Ooooh! I guess I’ll be 50 next year.” How silly was that? Here I’d been telling people for months that I was turning 50 this year! hahaha
Well, I think that’s all I can purge out of myself at the moment.
I will try my best to blog more often, I really want to become passionate about it again. I’ve missed my friends.
Today’s Prompt: Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/
I did a little bit of a different take on this prompt. I hope you like it.
Prompt for today Stream of Consciousness Day. Start with the sentence “_______”just write, don’t
stop, don’t edit.Post!
(written April 5th)
“Wendy” just write, don’t stop, don’t edit. Post!
Stupid computer can’t figure out what I want to do Can’t get the dang program to close…ugh….can’t make a slideshow…I know I’ve done it before…why do I want to throw it out the window.
Heard from friend was nice, but it’s hard. Can’t do so much. Other friend told me I wasn’t a good friend because I didn’t keep in touch and didn’t make time for her when I was feeling good, she’s the busiest person I know, I looked back in my emails, the not getting together wasn’t all my fault..I apologized. A lot. But the reply I got back seemed so cold, so sterile. I just couldn’t put more of me out there…..not with everything, I just couldn’t. She wanted so much more than I could give. I want more..but when you can’t just chat on the phone, and people don’t like to email or take your written words wrong it’s so, so hard. And to see someone in their prime doing everything you will never be able to do and everything is about that, and all I can think about is my illness, what is left? I miss her…I miss them…but I have nothing….I really feel I have nothing to offer. What can I offer. I can’t even hear them to talk to them. I focus on if I can get out of bed, brush my teeth, walk outside….maybe if I’m lucky a little more….what can I talk about to people who have a full life? a job, children, acitivites, friends, interests? I’ve been so consumed with just staying alive the past 2 years. Well that’s stretching….Well no it’s not!
This past year I’ve been through so much…and I’ve persevered, and now I’m mad at me!!
I was told I was better, and would be better!!! Damn the doctors! How could they do that to me!
I had 5 months of a new life! A better life! No vertigo. I was moving on. I started to become a Foster Parent, I started to drive, I got a CAR! I was making a life….I didn’t think it would be ripped out from me.! I was so busy….I didn’t think it would end…
After those 5 months I went through 7 more lumbar punctures SEVEN with 5 or 6 sets of patches down my spine. I spent about 6 months in bed with not only CSF problems but gut troubles too. I’ve gained nearly 60 lbs. I feel old, fat and ugly. I don’t like me any more….yet I do. I do. I’m proud of the way I’ve handled things.
I’ve had 2 in depth surgeries on my ears. Surgeries that took my ears almost completely off and drilled to my brain, and left holes in my skull the size of a 50cent piece. But they worked…I think.
I’m now told I have high CSF pressure…Intracranial Hypertension. Serious, rare. My hearing in my “good” ear is almost gone.
Now I’m falling apart….and I’m angry at myself about it!!!?????
I’ve been so resilient, so adaptive, so….I can handle it.It may not be what I expected…so I’ll change what I expected…NOW….I’m just plain scared and mad. I thought I was mad at everyone, I’m taking it out on everyone….But I’m so angry at me. I’m angry I’m not bouncing back, and I’m angry I’m not more tenacious, and I can’t do more and damnit….I’m angry that my body is doing this to me! I’m angry I can’t lose weight….I’m MAD AS HELL!
I’m angry I’m sick! And I have to deal with it. I have been dealing with it. But right now…I’m not doing the best with that. However, I know me, and I will. I’ll get it together, and get myself another lease on life. Life is good.
I have such a good husband. It can’t be all bad. I must think of the good days.
Yay! The Blackout worked!! SOPA and PIPA were dropped by congress today!!! I’m so thrilled!
I’ve had some good days recently, unfortunately today isn’t one. I woke up with a migraine today that has left me feeling icky. Meds worked but left me feeling a bit off….then headache returned. It’s minor right now, waiting to see if I need more meds.
On to the Good Days!
Remember when I said, I was going to take advantage of every good day and live it to the fullest? Well, I’m keeping my promise. Now, what one might call living life to the fullest, and what I call it, may be vastly different things. Just remember for about 6 months I was barely able to get out of bed, so the small things mean the world to me!
Has a wonderful day earlier this week, just enjoying the unseasonable warm weather. As you can see from the photo above, taken from our back yard, it was a beautiful day with a bright blue sky. This color sky is unusual for our neck of the woods, I haven’t seen a sky this blue since moving from California.
On Wednesday had my eyes examined, and have new glasses on the way! Afterward, I didn’t want to go home, so Stuart and I went to the mall. Just window shopping really. He wanted to try on some shoes he was interested in to decide if he really wanted them. He loved them! So, surprise! I ordered them for his birthday. Of course, they arrived today, and I couldn’t wait to give them to him…so he got his birthday present early! (his birthday is February 6th, shh, don’t tell him, but I have another surprise planned.) He’s so thrilled with his shoes, he’s been wearing them ever since he opened the package.
We walked all around the mall and had a nice afternoon together. That night, I was in much pain. My hips and lower back…oh my goodness. I took a hot bath with Epsom Salts, and felt better, but still had a hard time sleeping.
I’ve been in the kitchen quite a bit this week. You all know how much I love that! I have a lot of things to add to Wendy Cooks! We bought some plain ground pork and I made Italian Sausage without onion or garlic! I cooked that with potatoes, and kale. What a nice dinner. The next day I made Sticky Pork Chops. Served those with roasted green beans and rice. Stuart’s feeling spoiled. He’s so happy I’m cooking again. We also made a big pot of chicken stock. (Stuart actually got this one going.)
Yesterday we took the furry babies to the vet. Sandy really just came along for the ride. She did have a pedicure, but the main reason she was there was to calm Max. It’s so funny, Max really loves his dog. If we take him to the vet, he does so much better if Sandy is with him. Max got his annual check-up and shots. Our vet is so in love with our pets. Sandy is referred to as the “Wonder Dog!” If you read my blog regularly you probably know this, but Sandy is 19 years old, she has bladder cancer, cataracts have taken most of her vision, and she’s very hard of hearing. In July of 2010 we were told she had probably 3 months to live, but she may last up to a year. Well, she’s still going strong! Still runs and plays…she acts like a dog less than half her age! Our pets also have very good temperaments. They don’t fight the vet, as long as they are together, and mommy is near they have no troubles.
Last night I had a challenge. We took a friend out to dinner who is moving away for a new job. She wanted steak, so we went to the Texas Roadhouse. If any of you have ever been to a Texas Roadhouse, you know how noisy it can be. Normally they seat us in a booth with a very tall back, it’s much easier for me to hear if there is no noise behind me. This time, we sat in a booth with a low back. It was a challenge for me to hear. Stuart sat to my right, on my hearing aid side. Our friend sat across from me. Luckily, she has a voice I hear pretty well, and she remembers to look at me and speak clearly (most of the time). I think I only had to ask her to repeat something 3 times. Yay! Stuart on the other hand, I could barely hear. It’s amazing how much I depend on lip reading (they call it speech reading now, I don’t know why). We stayed at the restaurant for nearly 3 hours. So,I feel I passed this challenge fairly well. I was so excited! But I know it would not have gone as well with more people, or with someone who has a voice with a frequency I can’t hear well. (I’ll take the victory though! Eating out with a friend, something I haven’t done in a VERY long time.)
Unfortunately, the GI stuff hasn’t gotten better. Looking forward to find out what the dietitian has to say about getting the Fructose Malabsorption under control. I’ll be seeing her Wednesday of next week.
Whew, today is a bit of a rough one. My head hurts. Think I need to get off of the computer and take some more pills. I planed on making Spaghetti tonight with the rest of the Italian sausage. We may have left overs instead. Unless I can talked my dear hubby into making the spaghetti. It’s times like these I wish I could just eat sauce from a jar, but alas, it’s not to be. Plus, homemade is so much better!
I should have known better.
As I’ve mentioned before, I haven’t had the greatest sleep schedule, or sleep at all really. So my doctor put me on Rozerem. Rozerem is a sleep aid, but it isn’t addictive, and can take up to a week for full effects. 4% of the patients had increased dizziness compared to 3% who took the placebo. So a good choice for me, right? Umm, not so much. It was prescribed before my surgery and each time I took it I woke up with vertigo.
Last night I decided to give it a try again, thinking possibly it would be different now since things have calmed down so much.
Yes, I should have known better. I woke up, not with vertigo exactly, but the world is not being still! I’m using the walker to get to the bathroom and every time I move my head to either side I feel like I’m going to barf. I have acid reflux so bad, it hurts all the way down my esophagus and into my stomach. Neither my prescription acid medication nor Maalox is working. And the diarrhea is back. (yes I had one day of normality, yesterday, I’ve not eaten any vegetables, except a pickle and a piece of lettuce on my burger yesterday, for 3 days. The burgers I made, so I know they were safe. I think most of the diarrhea today is because of the spinny head. It does put me in the fight or flight mode, constantly expecting a full-blown attack.
I got the book Food Intolerance Management Plan by Sue Shepherd yesterday. It has the most up to date information about Fructose Malabsorption and other food intolerances. Sue Shepherd is considered THE expert in Fructose Malabsorption (FructMal). So I looked at the book, from cover to cover yesterday. I just knew I’d find something I’ve been doing wrong. Nope. I’ve been eating all safe foods. This book gives a lot more variety than I’ve been eating, and says I can eat much larger servings than I have been. So why is it that every time I eat a vegetable, I get sick? Ugh! I’m working on it. That’s my big goal this year, find out how to stop this GI trouble! Then I’ll think about losing weight.
So enough about my bad day. (we all know, it’s just a day, one day at a time right?)
A friend of mine works for Red Hat. It’s the world’s Open Source leader, according to their website. (yes, I’m a big foggy on all of that. So not the geek.) My friend, Ruth, wrote an article about SOPA and PIPA. Here’s the link: http://opensource.com/life/12/1/sopa-shelved-fight-must-turn-pipa-wikipedia-will-join-blackout
The title tells the story in a nutshell. SOPA shelved, Fight must turn to PIPA. Wikipedia will join blackout.
Did you see the last part…Wikipedia will join the Blackout!!! (Don’t forget the Blackout is the 18th, so you may be on line and not be able to find many of your favorite spots.)
If Google would join, that would make all the difference. Could you imagine a day without Google? Even just shutting down their search engine would make a huge statement. But alas, I doubt they will.
However, it also looks like WordPress has joined the strike, so my blog may not show up anyway. Neither would any other blog on WordPress.
On a different soap box….Don’t forget to PLEASE sign the petition about Headache Disorders – The Petition is Here.
Now, I’m going to take a nap, and hope my head is less wonky when I get up!