We are finally getting on the road to Arizona. We leave for Tucson tomorrow…so no we aren’t gone yet.
and neither is that stupid cold. I’m sure the virus is gone, but some of the symptoms are still here. Mostly a cough. Oh how I hope it’s gone before we get to Tucson, the last time I was there I had a cough from a bad cold, people thought I was dying….or very contagious. I don’t want hubby’s family to think I have a chronic cough…for years!
So what is Gone? My hair. Yes, I had 14 inches cut off yesterday. You read right, 14 inches! Stuart took pictures, and I promise I will post them, as soon as I can get them off his phone. We are just so busy trying to finally get out of this house and on the road, that’s on the back burner right now. (my hair is now just above my shoulders…or right on them) I look like a different person!
I know I’ve been missing in action for a bit. I’m sorry. When I’m feeling icky, I don’t really like to be on the computer. I was feeling overwhelmed every time I looked at my email.
Today I just wanted to touch base with my lovely friends….and anyone who happens to drop by for a read. I’ll give you the update from the doc and audiologist on my Cochlear Implant soon.
This overwhelms me too. so much I want to share, but what to tell first? I don’t want you to have this long post to sort through, but do I tell you what has happened most recently, or what happened before that I still haven’t shared.
I guess it will just come as it comes. If I could just get back on track with posting I wouldn’t have this problem.
sending a wish for a happy day to all
I miss blogging, I miss my blogging friends….but it’s hard to get started again.
Now I think of things that have happened since I’ve been away that you don’t know about, and things that are going to happen….so much to talk about I’m overwhelmed. Eh….maybe not so much. My life really isn’t that exciting.
I went through a bout of depression, that knocked me off my feet. By that I mean, I didn’t want to get out of bed. I’d wake up and think, what reason to I have to get up? I couldn’t think of a reason, and the sleeping side effect was not helping!
I know part of the depression started when Sandy died. But the biggest problem is a bit strange….at least to me, my therapist says it’s normal. I’ve been feeling better. The Meniere’s isn’t bothering much at all since the surgery in December. The Intracranial Hypertension (High CSF), is minor and under control with medication. My migraines are not as painful, but they are causing vertigo often! So much so that there is no way I’ll ever be able to drive again. The Migraine Associated Vertigo (MAV) gives me NO warning. I wouldn’t even be able to pull over to the side of the road, the world just goes crazy immediately. I can’t even walk around the block by myself, or do things in the yard. I tried one day, and it did not end up good. So I’m stuck in our house, unless I have someone with me (meaning Stuart). I know there is plenty I could do in the house, but when you can’t do things you want….well everything else kind of falls flat.
But I’m better. Really. It’s kind of funny. I was watching Sponge Bob Square Pants and he was singing, “I’ve got an attitude of gratitude….” And I realized I used to every day think about things I’m grateful for, and I hadn’t been lately. So I started thinking about it, and I felt better. Also we’ve been talking about fostering a dog, or perhaps adopting. Sandy was a rescue dog, and we’ve been thinking that taking care of another dog who needs rescuing would honor her. This has made me feel better about things, I really miss Sandy, and do NOT want to replace her, but the thought of honoring her by helping another dog….that makes me feel better inside.
Now that the sleeping has gotten back to normal, I’m feeling better about other things too.
We went to see the audiologist on Wednesday. I picked out all the options for the Cochlear Implant (CI) that I want! We expected to have heard from the insurance by now, but it’s seems to be a big old pain in the butt. And all I can do is, wait patiently. I’m not the most patient person!
Now, I’m started… let’s see if I can’t make a habit of this!
Bonus Prompt: I keep writing because… Start your post with this sentence and, as the title says, keep writing. Free write for 15 minutes without stopping and see where it takes you.
(today’s original prompt was to post a Health Mascot. My dog Sandy is my mascot, but I couldn’t right about that today. She died April 18th, one day I’ll write about what a brave, and wonderful dog she was, how many health issues she had and over came, how she was as the vet often called her, “a Wonder Dog”. But not today.)
I keep writing because…recently I keep writing because I am determined to finish this challenge.
Actually, I’ve begun to wonder, why I keep writing. I know why I started, I know I have made some good contacts, friends, and my heart has been here. This blog has really helped me through some tough times when I felt no one else was listening. I’d write, just to write, and I found there were others out there, others who felt like I did, others who needed to have that contact too. Now, I’m hurting so much. I’ve had so much loss this past year. I felt I dealt with each one, I was strong, and positive. I was told I was the most positive person someone knew. I was proud of myself and how I was looking at life.
Then another diagnosis came earlier this year, and it has been hard to deal with. I couldn’t be that positive about it. I’m still a bit in shock from it, and simply not sure how to look on things positively. I’m larger than I’ve ever been, and the doctors just seem to be ignoring it, yet they tell me my triglycerides are high, and I’m borderline high blood pressure….ect….but they all say, don’t worry about the weight right now, you have to focus on this. I’m afraid I’m on my way to diabetes. I read all these books on nutrition, cut out soda, all High Fructose Corn Syrup, snack on nuts, cheese, fruit, veggies, eat at home more, cut out gluten….all these will help you lose weight…but I do all of that. so why can’t I lose weight? I need help, I’ve been to a nutritionist, no help. Most don’t even know what fructose intolerance is….I know more than most of the “professionals”. I’m grieving for the loss of what I used to be, what I used to look like. I now have no energy, can’t exercise because it will raise my CSF pressure, I can’t walk for long because of my hips, I can’t even enjoy sex.
I’m grieving because I lost everything that I gained early last year. I can’t drive again…but I have a cute little car. I can’t be a foster parent, even though we went through all the classes had all the references…everything…but no, I can’t because it wouldn’t be fair with my health issues to bring a child into this. And frankly I don’t think I’d pass the physical now.
and worst of all I lost my best friend, my little baby dog. A HUGE part of me died with her. I have to find a way to make that part live again. To put the pieces of my life back together, even if some of the pieces are missing
Why do I write? Because I need to.
But I also need to take a break.
I may write sporadically for a while to let you know what is going on, but I need to take a break from the internet. I won’t be reading other people’s blogs as much or commenting as much. I need to take some time to focus on me. I may write about it, I may not. right now I’m simply trying to figure out how to get past all the grief of things I’ve lost this year, or how to grieve without losing myself. I need to focus more on the spiritual side of me. I need to make some huge decisions. My husband and I need to grieve over our Sandy together, and figure out how we will carry on with our family now that such a huge part of it is gone. We may end up moving. As I said a lot of decisions….and a lot of needs.
But yes I will write again. Because I must.
End 15 minutes…plus a little to put in the photo. : )
Today’s Prompt: Writing with Style. What’s your writing style? Do words just flow from your mind
to your fingertips? Do you like handwriting first? Do you plan your posts? Title first
or last? Where do you write best?
I was recently talking with a friend about STYLE. People who have it, those who don’t….and really, does it matter? Does it change a person? In writing, does it change the end result? I wonder?
I have noticed the way I write has changed over the year. Not where I write or how I start, but the words I use, the way I express myself..those things have developed I think.
But that wasn’t the question.
My writing style. For the most part, when I have things on my mind I want to talk about I sit down and just write. Straight on the post.
I guess I plan a little, I always know some of what I’m going to say but usually my posts just flow from me. I don’t normally hand write anything down first, unless I’ve had a lot on my mind, or I’ve been writing poetry.
The title is often the hardest for me. For some reason I seem to think it needs to go first, but sometimes I change it before I post.
I always like to include an illustration.
I normally write in bed….or on the couch. Always on my laptop.
When I’m writing a usual post I just write as if I were talking to a friend or group of friends sitting here with me. I try to always be open and honest and write from the heart.
Is it a style?
I don’t know. It’s just who I am.
With Meniere’s I have fluctuation hearing loss, with eventual permanent hearing loss.
If you are a regular reader you know my situation, if not I’ll fill you in.
Right now, my left ear has 0% word recognition and cannot be helped with a hearing aid, my right aid has about 80% word recognition with the help of a hearing aid. However, the hearing fluctuates. My hearing fluctuates more with weather changes, and when I have a Meniere’s attack. (to learn more about Meniere’s please see the page above).
One day a few weeks ago I woke up and could barely hear. Every sound sounded like it was coming through a busted speaker. The same went on for 3 days. I admit this had me concerned. When I lost the hearing in my left ear, the majority was lost in just 3 short months. The loss started in this fashion. Sounding like a busted speaker, having a tinny sound. Normally, in my right ear when the hearing fluctuated, it simply dropped, then would return, sometimes not quite all the way, but when it dropped, it was just a bit softer, not this tinny sound. So I was nervous. And I realize, this could still be a sign of potential nerve damage.
However, in about 3 or 4 days, I had a vertigo attack. Classic sign of a Meniere’s attack. Fluctuating hearing, then a vertigo attack, ending in complete exhaustion. When I woke the next day. I could hear again! I was so thrilled. I had a horrible headache, but I could hear. Who knows how long this hearing may last. I decided to do something I rarely do, I took much medication to get my headache under control, and went outside hoping to hear some birds. Sadly I didn’t hear any birds. I was not the right time of the day. But being outside was so nice. I decided to sit on the back porch and enjoy the beautiful spring late afternoon. Soon I was joined by a friend.
A huge bumble bee decided I would make a good friend. I was out on the back porch for at leash half an hour possibly more, this lovely bumble bee kept me company the entire time. He would come closer, then go a little bit away. He faced me, then raced away and buzzed right back. I talked to him and told him how beautiful he was and how I was out there hoping to hear things I may not hear much longer. As if he could hear me, he came up right beside my head, I could not only HEAR this beautiful Bumble Bee BUZZ, I felt it!! He then came around in front of me and looked at me. I know, this was just by chance, and perhaps because I had on a bright orange shirt. However, no matter how long I live, and no matter if I lose all of my hearing, I will never forget the day I heard a bee buzz.
This is not from a prompt it’s from my heart.
This is on the ugly side. Probably a post with too much information for some. It’s very emotional, and I’m not exactly sure where it will all end…
I’ve noticed a lot since I have been diagnosed with Intracranial Hypertension that my emotions are a bit out of whack, and I haven’t had the best filter on my mouth. I cry a lot of the time, and try to be as strong as possible. I feel alone and keep reaching out trying to ask for help, but just keep alienating people.
I continue to help others if they need to talk, if they need a shoulder…but my shoulders are just so soggy lately. There are days I feel I have it all under control, my headaches are better, my vision is better, I’m getting around a bit better, so why am I a mess? Why can’t I relate to people like I normally do?
I asked the doctor, is it the condition, the medication side effects, one medication mixing with other medication, do we need to adjust my bipolar medication??? I was told, “Yes. Maybe. It’s complicated.” then I was told, “I’m sorry your condition is not easily fixed.”
Well that’s all well and good, but I’m losing everyone around me. I feel like I’m going insane. I’m so alone, and scared. It’s getting to the point that the only one who will put up with me is my husband. At least I think I do remember to tell him how much I love and appreciate him.
Then the terrors start. I’m terrified of being alone, not all the time, just some of the time. It’s more than that, I’m afraid of being without my husband. (again, not all the time, sometimes I feel very capable, then other times…Panic!!!) What if something happens and he’s not here and I have vertigo and can’t stand up, and can’t stop throwing up, and …… panic, panic….what if I’m upstairs and he’s gone and I can’t go downstairs and my blood sugar is too low and I need to eat, but can’t get down the stairs safely….panic, panic….what if….I Fall??…..what if…..OH remember to BREATHE! There are just so many things he does for me, he has no idea how much easier he makes my life. Often just by being here so I know if I need him, he’s here.
So, what do we do first…how do we sort this out? Already 2 medication changes. Soon another. This week I see my Psychiatrist to see if there is anything we need to change there. Is there any medication that is working against anything. Should we add something to help ease some of this? Will it help?
Does anyone really have any idea?
I do have bipolar I disorder, I know what it feels to not be myself. I know I’m not going through a depressive or manic swing, but I know I’m not myself, and that tells me I need to back away. Unfortunately, I wasn’t listening to that little voice when it first started screaming at me a few weeks ago.
Will I have any friends left at the end of this. I admit I didn’t have many at the beginning. Having a chronic illness for this long is not good for keeping good relationships. No one’s fault really, it’s just very hard. But I’d like to stop alienating the few people I do have supporting me.
Right now, I plan to finish this months writing challenge then take a Hiatus from my blog for a while and try to get this straightened out. I don’t feel like I’m myself lately, and I don’t want to be putting words out there that aren’t really want I want to say.
I hope those of you who have been on the confusing end of my emotions recently can find a way to understand and forgive. After the 1st of May, I plan to just take a break, I hope to see you soon.
I started writing about my health because I wanted to log how my health was improving. It was after a couple of surgeries, and I was ready to start exercising, eating better, and making some grand changes in my life, but I still wanted to keep up with my symptoms and start talking to others who had some of the conditions I did to find out how they dealt with them. I knew not all of my conditions were going away, I just didn’t understand how much they could take over your life. (for a list of my conditions, please see the page above, titled “My Ants”)
Soon my health started getting worse, and my writing became more important to me. Reaching out to others became more important. Finding out all I could about my illnesses was very important, I had to know what was going on, and I needed to share what I found with others. I felt alone, and I needed to make sure others didn’t have to feel the same. If they could find me, then they didn’t have to feel alone any more….a grand idea I know, not everyone will click with me, but they may read something here and think…”Yes, I feel that too.” I soon found out way too many people did feel the same. One of the ways we no longer feel alone is through our blogs, and our online communities.
Now there are many reasons I write about my health -
- to get to know others who are in the same or similar situation I’m in.
- to get more information out there about my illnesses
- to let people know they aren’t alone, and so I won’t feel so alone
- to promote more knowledge about my conditions, especially Meniere’s and Intracranial Hypertension (most people don’t know much about those.)
- to put a face on invisible illnesses
- to make it easier for people to talk about having a chronic illness
- to learn ways manage my illnesses easier. (for instance, using aids for assistance, like my walker or hearing aids….)
- because I love myself, and writing makes it easier for me to accept my illness, and to constantly adapt to new expectations.
- and one huge reason I write about my illness – so I won’t drive my husband crazy constantly telling him every little detail over and over and over!
If you had a super power what would it be?
Hummm, that’s kind of a no brainer. I’m chronically ill, I know a lot of people who are chronically ill….I think I’d have to say a healer.
So I decided to take this a bit further. I’m a bit of a cartoon buff. Of course, when I started thinking about super powers I started thinking about cartoon characters. My husband and I started talking about it, and I told him I thought I’d like to be Katara, from The Last Air Bender (please note, I am only referencing the animated series, I have not seen the movie.). I’m also an environmentalist, and believe the earth has to be in harmony.
This animated series brings all of this together. The world is divided into 4 nations representing the 4 elements, Earth, Air, Water, and Fire. I’m not going to go into the plot of the show, just explain the power I’d like to have. There are some people from each nation with “bending” skills. It combines martial art skills with controlling specific elements. Each nation’s bending ability would have it’s own martial arts style, and ability.
Katara is from a Water tribe. She can bend water. It is a beautiful thing to see. The flow of her body as the water follows her movements, she can make it whip, and encase someone, and freeze you in place, and she can use it to heal.
Katara is strong and has a pure heart she fights for what she believes is right no matter what the cost. She gets so angry sometimes, but it’s because she feels so deeply. When the show first started she had a lot of growing to do, but by the end, she had grown into a fine young woman, and an exceptional water bender. She can take the water and mix it with the water in your body and heal you, it may take some time, but it can often be done. I would be proud to be like Katara. (but I wouldn’t want to live at the South Pole, good thing she travels a lot.)
The video below is a tribute to Katara, it’s set to music so if you don’t have sound, don’t worry you aren’t missing dialogue. You will see how passionate she is, the amazing fighting skills, and notice when she takes the drops of water out of the vial around her neck and places it on the boy’s back, she is healing him after he was nearly killed in a battle. Amazing powers….actually, I think they are only slightly a gift, then they are a skill. If you do not have a good teacher, and practice, this gift will not turn out to be the power Katara has made of hers. Another reason I would like this type of power. I have learned that an ability you have fought to achieve is much more appreciated.
I hear many quotes that I get inspiration from. The one I’m continually inspired from is one I heard over and over again from my mother, “I Believe In You.” After she died, it was a long time before I heard those words again. Now, I’m so grateful to once again hear the same words over and over from my husband.
Those 4 words resonate through my very soul.
“I Believe In You”
Because of these words,
I was the first person in my family to graduate college.
I had the courage to seek help for a mental illness (Bipolar Disorder) that was tearing me apart.
I had the courage to become an artist and show my artwork in a gallery and have a one person show.
I have had the courage to face my chronic illnesses as they have been diagnosed, including Meniere’s disease a vestibular disorder with sudden vertigo and hearing loss, and most recently Intracranial Hypertension a disorder of the brain causing high cerebrospinal fluid. (please know these are very simple explanations of each of these disorders)
I have the courage to face each day as it comes, make the most of each good moment, and realize that at the end of my days I will look back and all these moments will have added up to be a pretty good life.
“I Believe In You.”
Everyone faces their own battles, we all need someone to believe in us.
Who do you believe in?
Have you told them?
Make sure to let them know.
When you are facing a hardship, fighting a battle in your life, it’s easy to give up when you don’t think anyone believes in you. When you have someone pulling for you, someone who believes in you, it’s much harder to give up. Courage comes from belief. Belief in yourself, for some belief in a higher being, but sometimes, we need a little help from someone else. We need to feel a human touch, someone who can reach out and say…”I Believe In You.”
My wish…Go out today, and tell someone special you believe in them!
This is the first post in WEGO’s Health Bloggers Post every day for a Month Challenge.
This is from one of the Extra Prompts they sent out. A Poem…
I used to be…..but I’m not any more.
I used to be a hearing person, but I’m not any more.
I used to be in less pain, but I’m not any more.
I used to be steady on my feet, but I’m not any more
I used to be active and social, but I’m not any more.
I used to be a thinner, but I’m not any more.
I used to be less understanding, but I’m not any more.
I used to be unaware, but I’m not any more.
I used to be less loving of myself, but I’m not any more.
I used to be full of other expectations, but I’m not any more.
I used to be less accepting, but I’m not any more.
I used to be alone, but I’m not any more.
I used to be sad about losing my old life, but I’m not any more.
There are some things I miss about what I used to be, but I like myself more now. I’ve learned so much about me. I’ve learned so much about life.
My illnesses may have caused some things to not be as I expected them to be, so why not simply change those expectations…or get rid of them. Live day-to-day. Moment to moment. Soon you will look back and all those happy moments, will become happy days and the happy days will have added up to a happy lifetime.
Every day you possibly can, do something fun, be happy!!
I used to sad about being sick, but I’m not any more. (well, most of the time.)