We’ve been home almost two weeks, it doesn’t feel that long to me. The first few days I felt better, just exhausted, so I rested a lot. Then I started feeling wonky, and having a lot of migraines. Nearly every day I turn to Stuart and say, “It’s not a good day.” The disequilibrium has been so very bad, I’ve only been on the computer once since I’ve been home. (I hope I haven’t had any important emails). When I try to read on the computer I feel car sick. I can’t stay on for very long, but today I’m going to try to do some things, a little bit at a time. I also haven’t been out of bed other than to go to the bathroom except one day, and I didn’t last long. I think I’d try to venture out more if we didn’t have someone staying with us. (our house sitter asked to stay until June 14th, she’s moving then, and Stuart said yes….long story). It terrifies me to have an attack in front of someone other than Stuart, or a doctor. Even doctor’s make me uneasy. So, going downstairs takes a lot of courage right now. (not that she’s here all the time, but I’m still uneasy). Don’t get me wrong, I do like her, but right now I would feel this way about anyone staying here. I’m simply not having good days.
There really isn’t much more to say today, I wanted all to know I’m still alive. I’m going through a time of change. We’ll see where it leads, but Picnic With Ants may change considerably.
I can tell I’m very depressed, and have been for months. Last year was very difficult for me, and the beginning of this year hasn’t been a walk in the park. I see my new psychiatrist on Thursday, I think, I’m anxious to see if she has any suggestions. I’m really tired of doctors telling me that if I could exercise more it would help my moods….well I can’t, so what am I supposed to do?
I have lot’s of doctor’s appointments over the next two weeks. I’m overwhelmed just thinking about it. Hopefully, all will go smoothly.
Thanks for staying around. I feel like I’ve lost so much over the last year…or more… But that’s for another post.
don’t know when I’ll be home again… (yes I butchered the song, “Leaving on a Jet Plane”).
We will be leaving Tucson tomorrow, Tuesday, March 19th. I’m very ready to get home and absolutely terrified of the trip! Terror to the point of making me sick. What to do? Oh what to do? I know I’ll be alright no matter what. Stuart will be with me, and he’s just wonderful at handling things when I’m not at my best. I feel so guilty, Stuart has been packing everything and getting food ready, and washing clothes…..yes, he’s been doing everything, as I lay in bed with ice on my head in the dark, trying not to throw up. My stomach hurts so bad I’m getting scared….do I have an ulcer?
OK…now you’ve seen me at my most anxious. Not pretty is it? Getting here wasn’t that bad. I had that horrible cough and every room we stayed it smelled way over fragranced. I’m sure it’s because we have to have a room where pets are allowed, but it kills me! But I didn’t get sick…I mean sick, sick….until we got here. Then I had a horrific attack, in a car! I think that is one of the things that is scaring me the most.
I am ready to go home, or at least I’m ready to leave here. This was one of the most miserable trips I’ve ever been on. Spending the little bit of time, I was able to, with my niece made much of the misery worth it.
I noticed something the last time I was with my niece, I push myself more when she is around. I have a ball with her, but I do more than I normally would…and I pay for it for a few days, however, it’s totally worth it! Her imagination is incredible! I wish I was able to spend more time with her.
I have so many appointments when I get back to NC. First I see my CI (Cochlear Implant) audiologist. I may have mentioned on here that I haven’t been thrilled with my hearing with my CI…but I figured something out! My CI audiologist adjusted things so it would work best with my hearing aid. After all we hear better with two ears. The trouble started when my right ear decided it was going to go defunk since we’ve been here. I can barely hear anything out of my hearing aid…on good days…and it is distorted. So I’ve just been wearing my CI…it wasn’t set up for that, so I’m feeling much better about that. It does look like the second CI will be happening….after all, the hearing aid isn’t doing much.
Second appointment, my therapist. Oh how I look forward to talking to her about this trip, what a let down. Plus, I’m really over loaded with guilt lately. I think I should say…GUILT! Not that it’s justified. Most of it is about things I can’t do anything about. But one big issue I’m having is my grief over Sandy, and my guilt surrounding her death. I simply will never know if I did the right thing, if we could have done more? I simply miss her so much, there still has not been a day since she died that I have not cried. On April 18th it will be a year since I lost my little girl. (funny how we say “lost”, I didn’t lose her, I know where she is…in a little brown box wrapped up in her favorite blankets with her favorite toys and a raw hide) I’ll always love you Sandy girl….but I need some help dealing with the loss of my very best friend.
I’ll also be seeing my Otologist for a CI check up, and to discuss the possibilities of another one.
In May I’ll be seeing my headache pain specialist and get more Botox shots! Yes I’m looking forward to that appointment, too bad it’s so far out.
Some time in there I’ll be seeing my GP, time for blood test, have her check out this cough thing and all that kind of stuff. Including this horrible stomach pain.
So I’m all caught up…I think. Not sure if I’ll be able to do anything on the computer while we are traveling. I know we’ll have Wi-Fi in our rooms, .but don’t know if I’ll feel like looking at the computer.
I 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!!
As excited as I am about getting the Cochlear Implant (CI) next week, I’m nervous too. I realized this yesterday. I had appointments scheduled for this week and a dinner with friends scheduled for Sunday, and I told Stuart I just couldn’t do it. I simply feel like there is too much stress on me right now. With all the stress, I was making myself sick.
So what am I nervous about? You would think I’d be nervous about the surgery, but I’m not. I am nervous about the nurses finding a vein for the IV before the surgery, that is always an ordeal with me. However, mostly I’m worried that the surgery will be postponed. There have been so many delays, I’m having a hard time believing it’s going to happen. I am expecting something to happen…I’ll get sick, my doctor will get sick or have to postpone for some reason….anything.
Now that I realize what has been bothering me so much, I’m dealing with it much better. I know the surgery will happen. If some unforeseen circumstance causes the surgery to be delayed , I’ll deal with it. I know it will happen, if not next week as scheduled then as soon as possible afterward. I still don’t want to be stressed out more by going to the dentist, having a mammogram, and having a dinner party. These things will just have to wait.
Now, let’s talk a little about the surgery. I’m pretty lucky really, about 90% of the surgery has already been done to me. Since I had the Endolymphatic Sac Surgery, they don’t have to drill a hole in my head. It’s already there. All that has to be done is thread the wire from the CI into the cochlea, and place the implant.
There were 3 companies for me to choose my CI from, each had positives and negatives but really they were all pretty close. I chose Advanced Bionics. This is a very personal decision for each person who gets a Cochlear Implant, I felt that the Advanced Bionics CI would fit best in my life style.
This is what will be going in my head:
I’m so happy that Duke is a two processor facility. The processor is the part that you see on the outside. Since Advance Bionics offers more than one processor, I was given the choice of getting 2 the same or one of each. I chose to get one of each. One processor is called the Harmony, it is a Behind The Ear type. I liked this model because the T-mic (microphone) is located at the opening of your ear, so it will be easier to talk on the phone, and my ear will act as a natural buffer for noises, like your ear normally does.
Here’s a photo of the Harmony Processor:
The Harmony comes in a variety of colors. I think I was allowed to choose 5, but it’s been so long now, I don’t remember what colors I chose. We’ll have to wait and see after I get hooked up. You can use regular hearing aid batteries, or rechargeable batteries, I’m sure you know which ones I’ll be using. I was able to chose different types of rechargeable batteries, small and large. The small battery doesn’t last as long as the larger one. I ordered both.
The other processor I chose was the Neptune. The Neptune is capable of being Water Proof, it’s the only CI that is Water Proof, so I can swim in it! The Processor is not behind the ear (BTE) it can be clipped to different things: an arm band, your shirt, a lanyard, your hair…ect. The microphone is on the part that fits to the head.
Here’s a photo of the Neptune:
I realize the photo above doesn’t give you a good idea of what the Neptune really looks like. So here’s a few that will give you a better idea:
With the Neptune I was also given the opportunity of picking all kinds of colors. I know I picked a brown, and the lime green seen above, but I don’t remember the rest. We’ll all be surprised when I get hooked up.
The CI will be turned on 2 weeks after surgery. That will be the beginning of August, hopefully the 2nd or 3rd.
Anybody want to know anything else?
I know this is a LONG post, but it’s full of information, right?
We can make it, one day at a time. : )
We all have them…those little things that really annoy us. I’ve noticed lately that I have more pet peeves than I realized.
I really annoys me when:
- I write a whole post then I hit “Save” or “Publish” or “Preview”, and suddenly I’m told my login expired and I need to login again….of course, at least half of my post disappeared! Yes this just happened, and I don’t have the brain power to do it again right now. Ugh! I how annoying!
- I go to a party with many people in attendance, and the only towels in the bathroom are those little finger-tip towels. Ick! They are dripping wet within half an hour! Why do people do that?
- I go to a party and they have the rooms decorated for the party, but the bathroom is dirty. again…Ick! Of course, they also have no towel at all in the bathroom!
- I email a company and don’t get a reply, or I email a company and explain I’m emailing because I’m hearing impaired and can’t talk on the phone, then they email me back that I need to call. That’s just rude.
- Insurance companies give you the run around….for weeks and weeks.
- I am asked at the doctors before a procedure if there is any way I could be pregnant and I answer “no”, but they make me take a pregnancy test anyway…Why Ask? Just tell me to pee in a cup!
- people won’t admit to something they did wrong. (for example, we had new carpet installed last weekend, in our bedroom there are two gouges in the wall. It was covered by a paint that does not match our paint, it’s close, but it doesn’t match. They didn’t even fill in the holes, just painted over them. Now they say they didn’t do it, they said don’t have paint. I KNOW it wasn’t there before, it’s right by the door, I see it every time I walk out of the room!) Why do people not take pride in their work? Or show respect to other people….and that brings me to another pet peeve….
- people are rude! So many people are rude and do not respect others, or their environment. Think about the car that cuts you off and speeds away, only to get stopped at the same stop light you do. The person who throws trash out on the road, or in a parking lot. The person who leaves a grocery cart in a parking place. People who are rude to those who provide customer service to them….like waitresses, cashiers…ect. And on that note….
- people do not get off the phone when they are checking out of a store, or at the bank…ect. How rude is that?
- people who talk on the phone, or text when driving. Texting is simply stupid….what on earth are they thinking? But…how many times have you been aggravated by how someone is driving, only to look over and see they are on the phone? It’s illegal in our state, but people do it constantly. (and I’m not talking about hands free)
- I have to wait way past my appointment time…anywhere. Why is my time considered less valuable than the person I’ve come to see? And I really hate it when they are very late, and don’t apologize, or thank me for waiting…ect.
- people who are very educated use bad grammar. There’s a difference between someone who doesn’t know any better, and those who just don’t care. (there is one person I know who should know better, but she always says “weren’t” when she should say “wasn’t”…it makes my skin crawl.)
- people who write everywhere as if they were texting! I have a friend on Facebook who writes her status updates like that…it drives me crazy, and I will admit I often do not understand what she is saying.
- Things I’m looking forward to are delayed over and over. (I got a call from my surgeon’s office today telling me we have to reschedule my surgery from July 11th to the 19th or after! We just set up the surgery yesterday, now another delay. I’m beginning to wonder if I’m meant to get this cochlear implant. One delay after another. This should have happened 3-4 weeks ago. I’m so depressed about all of this. It has been a constant stressor for almost 2 months!) Yes! I am annoyed! Heck, I’m downright pissed!
See what I mean? I have a much larger list of pet peeves than I ever thought I would. Things used to not get to me so much. But please note, I don’t hate the people who do these things, I simply hate some of the things they do.
I must practice showing understanding, and compassion….but I’m sure some of these things will always annoy me.
What is your Pet Peeves? Are some of yours the same as mine?
Every year since my mother died Mother’s Day has been bitter-sweet. Everywhere I look people are telling you to get in touch with your mother, let her know how much you appreciate her, and how much you love her. I’m sure there are many people who have lost their mother or perhaps lost a child, or for those who have mother’s who are not someone you really want to thank….you know they are out there….and this holiday is very, very hard for them. Just as it is for me.
This year, Mother’s Day is especially hard for me. This year, I expected to be a mother, a foster-mother yes, but a mother non-the-less. That dream was taken from me this past year, and it won’t be coming back. I’m okay with this decision, but it stings right now.
Mother’s Day is also very hard this year because I lost my little baby girl….yes, I’m talking about Sandy. I know many won’t understand because she was a dog, but she was my baby for 19 years. She was more of a constant in my life than any human. And yes, it may sound silly, but most Mother’s Days I got a card from her and Max. (yes, I’m not delusional, I know Stuart sent the cards, but her little paw print signed it….and I was her mommy.) Stuart would joke around and make a special breakfast for me saying that our children insisted that he do so. Yes, this Mother’s Day will be very hard.
This week Sandy’s memorial bench arrived. It’s sitting on our front porch, but we haven’t been able to inter her remains yet. Yes, that will probably happen this weekend. Her ashes are in a little box, this will be sealed in her special box (where we kept her stuff), with her special blanket, sweater, collar, just little things we think she would have like to have. All of these things will be sealed in an airtight container, then sealed in the bench. In our will we have a provision, when we die we plan to have our ashes mixed, Sandy’s ashes will also be mixed with ours. (Max’s too, but since he is still alive, I don’t want to say things like that.)
Are we strange for caring so much about how our dog is cared for after death? Are we the only ones like this. I hope not.
But I’ve wandered away from the point of this post. For all of those who find holidays like Mother’s Day, Father’s Day, Valentine’s Day, and even Christmas hard, you are not alone. For all of you who now someone who has a hard time during these holidays, reach out. Everyone needs to feel a little love.
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: 5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.
I think this is a very good prompt, and normally I’d be able to write it very easily, but the depression I’m feeling right now will make this more difficult. (yes depression, but it’s deserved, I’m not clinically depressed at the moment. I’ve had a lot to deal with, and the loss of a loved one, so I’m depressed. Please no worries about my sanity. *smiles*)
5 Challenges – 5 Most Difficult Parts of My Health Focus
- The constant changing. Things seem to be settling down, and wham I either get new symptoms or a whole new diagnosis.
- Making hard decisions. Do I get the surgery that may help? Do I try to live in the deaf world? Do I take this drug even though it has some harsh side effects? Do I get another opinion…..
- Keeping Positive. OK, I’m not doing this very well right now, but it will get better. I know it will. (there see still positive! I just think it will take longer this time.)
- Risking leaving home. This sounds like I’m afraid to leave home, and sometimes I am. I have vertigo attacks with no warning. If I’m more than 30 minutes from home and have an attack start, it terrifies me.
- How to keep my caregiver from burning out – How to keep my marriage strong through all of this.
5 Small Victories – 5 list for the little, good things that keep you going.
- For dealing with the constant changes. I decided long ago that life isn’t going to be as I expected, so I decided to change my expectations. I’m usually pretty flexible now at thinking, well this will change some things…what will it do, and how can I change to keep myself going. (I will admit here, I’ve had a new diagnosis that has thrown me for a bit of a loop, the treatments are hard, the decisions are hard. I haven’t quite gotten to the point where I feel I can think about my new expectations, I simply don’t know what to expect…but when I do, things will fall in order I’m sure.)
- Making hard decisions is still difficult, but I feel better about it because I know how to look up many resources, I know other people (on-line) who have the same issues I have so I can ask them what their experiences have been, and I’m very lucky to have a husband who helps me weigh the pros and cons and is able to look at things objectively. However, he always leaves the final decisions up to me.
- Keeping Positive. - This hasn’t been a hard thing for me until recently. I get a bit upset about things when things change…I’ll have a pity party. Then I say “Enough!” And start thinking of how I can stay positive. I think of things I can still do. I think of others who are going through the same thing, and know many of them help me see that it can be alright, and I want to help others know that too. Yes, again, recently this has been hard. I’ve had a lot dumped on me in a relatively short period of time. I’ve lost a lot. But I have no doubt that I will get back to the positive me. I still believe in living every day you feel well enough to the fullest. Even if that means just sitting out in the backyard. Do not take things for granted. And try to think of something you are grateful for every day. Sometimes I write the same thing every day for a few days because that’s all I’m feeling grateful for that I can think of….but other days I can list many things. (Toni Bernhard’s book How to be Sick, has helped me keep positive thoughts, and helped me to look at things a bit differently…I highly recommend it!)
- I risk going out of the house much more than I used to. I’m still afraid of having an attack, but I carry an emergency kit with me all the time. It contains emergency meds, water, wash cloths, small trash bags to throw up in, some Zip-Loc bags to put cloths in after being sick…..things like that. I’m still a bit leery about going more than 30 minutes from home. When I have an attack it is not pretty. I feel humiliated and degraded. I can’t stop throwing up, I can’t walk, I often have diarrhea, and cannot control my urine. So I recently decided if I’m going on a longer trip, I will need to wear disposable adult incontinent panties….just in case. If I have an attack in public, I do not want to be mortified by strangers seeing me defecate and wet myself. I also always carry emergency medication for migraines. These measures may seem a bit drastic to some, but it has made it so I can go out and not be terrified that if I have an attack I will be left with no help. I also carry my phone with me all the time and it has an emergency button if I need to call 911. I won’t be able to hear them, but I can tell when they pick up and tell them what is happening, and where I am.
- Making sure my caregiver takes care of himself, and keeping our marriage strong. This has been a bit difficult. My husband will not admit that caring for me wears on him. He will say sometimes he feels weary then he thinks about what I’m going through and it goes away. He also says it is an honor to care for me. He loves me so much, he feels honored that I trust him so much with so much that he has to see. He never gets grossed out, and always makes me feel loved, even during the most degrading moments. We keep our marriage strong ….in many ways. I thank him every day for the things he does, and when I can do things, I do. I try to do little things he really likes, for example when I can cook, I try to make things I know he loves, and that is healthy. In many ways my being sick has brought our marriage closer. One BIG thing we do, we see a counselor together. Sometimes we individually go in, but normally we are together. We can say things there and it’s safe, and if we thought it might hurt the other, she can defuse it and make us understand where it’s coming from. This has made a HUGE difference in how we treat each other.
We also take advantage of my good days. We even try hard on the bad days. We always show each other that we care. We curl up together, we massage each other (I admit I get more than I give here), we go for drives together….and on special nights when I’m really feeling good, we go on a date.
This was easier than I thought it would be. I do still have some positive outlooks still in me. Yes, I’m depressed, but I should be, as I said before. I think the only reason I haven’t been able to deal with the latest diagnosis (Intracranial Hypertension) is that I’m getting conflicting news from different doctors in my team. And I just don’t know what’s going on with this….my migraine specialist thinks most of my symptoms are caused by migraines. So the IH, may not be a big deal right now. But the medication for it is still helping, so that says I should have it….but I’m confused. So confused. But I’m positive, it will get better.
So yes, this was a good prompt. It made me think about my health issues, and it made me look deeper about things than I had been. I’ve only been dealing with the overwhelming emotions, not the thought process behind them.
So thanks WEGO HAWMC team for this prompt!
From the moment I saw you as a gangly little dog who had been abandoned in a dumpster you stole my heart.
It has been over 19 years since that day, and I’ve loved you every moment. You have listened to me in good times and bad. You gave me a reason to live when I thought there was no other. I knew you depended on me, and many times I depended on you.
You have always been much more than a dog in this family. From the moment Stuart first walked in the door, you gave your approval. You met him at the door, this stranger, as if you’d known him all your life. It was love at first sight, and he instantly loved you. I knew from the way he greeted you with such affection, this man might just be a keeper.
When were got engaged, you were part of the celebration. We had pictures taken, of course you were a part of them. You would have been in our wedding if it hadn’t been so far away. However, you were not forgotten. My maid of honor gave a most touching speech mentioning how she was so lucky to be present when I met my first true love – you. Yes, you came before Stuart in our wedding toast. My dear, dear Sandy you are so very loved, and always will be.
Over the years we’ve been through a lot together, you have persevered through so much. But this last attack on you was more than your little body could stand. Since Friday you have had such a hard time. The seizure was hard on you. You seemed to be better when we brought you home. The next day you were tired, but seemed to be coming around, back to yourself. We started you on the seizure medication, and you got worse, and worse. For the last 2 days it has been very hard on all of us. It seemed you didn’t know us, or know where you were. You had to pace, fast, you kept running into things….it was a pitiful sight. We tried to calm you, but it made you more anxious. After 3 trips to the ER Vet yesterday we decided to stop the seizure medication, hoping you were just having side effects. You had a peaceful night at the vet’s office, and this morning they thought you looked much better, until you got home. The pacing started again. You had no idea who we were. We took you to our vet, hoping for some help. We didn’t know how long it would take for the medication to get out of your system. We were heart-broken to find out it was already. We knew then that it was time. Your quality of life was not as it should be. You couldn’t go on as you were.
They don’t know if the seizure caused your temperature to go too high, or if the cancer had metastasized in your brain possibly causing the seizures in the first place. All we know is your brain wasn’t working properly. You were not happy. You were miserable.
I hope it helped that we were with you, holding you as you drifted off. I hope you could understand just one last moment how much we love you. How much we hated to see you go, how much we will miss you. Both of our hearts are breaking. But we thank you for bringing us together. If you hadn’t approved, Stuart and I wouldn’t have lasted. But you accepted him in our little family. He was one of us. Thank you for making sure I wasn’t alone.
You have been my friend, my first true love, and my constant companion for 19 years. You have been a special part of Stuart’s life for over 11 years. I hope you will always know how much you are loved, not just by your family, but by everyone you met. You are a special dog, who will be missed very, very much.
Goodbye my dear sweet puppy dog, there will always be a place in my heart that will belong to you.
April 18, 2012 11am