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.
On May 1st, I saw the audiologist and ear doctor and as my ear doctor said…..”Your hearing sucks!”
On my hearing tests the word recognition in my left ear was again 0%, and the right ear was 28%. So it’s pretty obvious I don’t understand a lot of what’s being said.
On Friday, May 4th, I had the official hearing test to determine if I am a candidate for a Cochlear Implant. Yes! I am!!
Advanced Bionics – Harmony- Cochlear Implant.
Next step. Insurance authorization. It can take 4-6 weeks. During this time I need to decide which device I want (there are 3 available, and each have some pros and cons…so a lot of reading and research). Also, during this time I need to think of any questions I may have, and be prepared to ask them all. However, I understand the surgery, how the cochlear implant works, how I’ll be hearing differently, and most everything I can think of right now. I’m sure questions will arise though.
After the insurance approves everything, we just have to schedule the surgery…and it’s go.
About 2 weeks after surgery they will turn the device on. I’ve been warned I may not hear much at first. As time goes on my doctor thinks I will hear better and better. If after a few months I feel I’m hearing better out of my left ear than my right, it is a VERY big possibility that by the end of this year I may be getting a second CI. They say if you need 2 it’s better to get them close together if possible.
I was told that I am in a good place about all of this, I’ve only recently lost my hearing and people who get CI’s who recently lost their hearing normally do much better.
Right now, I’m excited at the possibility of hearing again…but cautious. I know hearing through a CI is not the same as hearing normally. I understand all surgery carries some risk. So naturally I’m cautious.
But how would you feel if you were told that in just a couple of months you could go from 0% word recognition, to hearing again. Yes, I know I may not understand everything in the beginning…heck, I may not understand anything….but it will come. I will be able to hear again.
**In other news about me…… The migraines are so much better!!! I had another round of steroids, and hopefully they have stopped the cycle. (There is some doubt right now that I have Intracranical Hypertension. If I do, it has not escalated, and the medication that should help didn’t help much. The migraine treatments have helped much more. My last lumbar puncture did show high CSF, but not very high. Actually, it was pretty low in comparison to most people who have IH…..so we don’t have to worry about a shunt any time soon, hopefully, never!)
Today’s Prompt – Recap HAWMC. You did it! 30 posts in 30 days. Which was your favorite prompt? Which was the mostdifficult? Which ideas will you reuse? Who was your favorite fellow blogger?
ASL sign for FINISHED!! Image from utb.eduYES! I did it! With one of the roughest months in my life, I still did it! I didn’t even use the 2 off days they said I could have! I accomplished something I set out to do! Woot!
I’m so pleased that WEGO Health gave us this opportunity. They have done so much to bring Health Activism to the forefront, in a very short amount of time. Thank you WEGO Health!
WEGO Health wants some feedback to this monthly challenge. I probably gave them much more information than they need. I’d love to hear what you about my different posts for the month!!
Which was my favorite prompt? I admit my favorite post of the month was not one I thought would be my favorite prompt…but as with many I took my own interpretation of it. (and I think that’s a great way to make a prompt work for you…change it enough to make it speak to you.) The prompt was to create a theme song for my blog. Since I have hearing difficulties I originally thought…I can’t do this. However, I decided to use this opportunity to bring attention to my Sounds of Silence…the tinnitus I hear every day, even if I can’t hear anything else. You can find this post here. My Sounds of Silence. I’m especially proud of this post. My friend Vincent Morrison (who worked on the sound production for me) and I had a hard time putting it all together, but I think it shows how different tinnitus can be for people.
One of the bonus prompts I really liked was the first one. “I used to be….but I’m not any more.” This put forth a lot of my feelings but still I was able to leave a positive spin on it. This was the first prompt I used, and think it was a great starting point for the month.
Which was the most difficult?
This is a hard question to answer. Do they mean hard as in emotionally hard to write, or hard because I didn’t like it?
I decided to do a list of the prompts I found difficult to work on because they hit a nerve….and then a list of prompts that were hard simply because I could not get into them. This doesn’t mean they were bad prompts, simply that I had a hard time interpreting them to suit me. That’s one reason I really liked receiving the Bonus Prompts!
Prompts that were difficult because of feelings they brought up:
Prompts I simply couldn’t get into. I know others who really loved these prompts, they were just difficult for me to get started on. (again, why I liked having the option of the Bonus Prompts)
Health Time Capsule (I read some great posts from this prompt, it simply wasn’t one I could get going one
Ekphrasis post (I tried and tried to do this prompt, I thought it would be easy for me because I am an artist, but my post just kept getting longer and longer. I’d have to practice this type of writing to be able to do this post…and well I didn’t have time for that. But again, others did an excellent job!)
Pinboard…I don’t like Pinterest. I find that a lot people do not give credit to the creator of the images on this site. I would have liked this post better if it just said to list images. But again, a personal feeling on my side. Lot’s of people LOVE Pinterest, and that’s great.
Madlib Poem – This just really didn’t do it for me. I it took so long to fill in all the words, then the poem came out not meaning much. It’s great for a comic day, a little relief from talking health all the time, but I was confused. And with the brain fog I have with my illness, I was unable to enjoy this like I thought I might.
3rd person post – I tried to write this post, but found trying to talk in the 3rd person made my post way too long. I guess I’m just not good at this unless it’s a short piece, like I did for the 6 sentence post. I guess I’ve been writing in the first person so long I’m a bit rusty on this type of writing. This does give me great insight into that part of me, something I need to work on.
Health tagline – I think most people with blogs have a tagline already, and if not…I wasn’t sure how much more I could do with this prompt. It felt like a one or two line post. If you use this prompt again, I think it should have a bit more to it. Not sure exactly what, but this was missing something….at least for me.
Prompts I liked that I might use again…
6 sentence story…I might do this again, it’s a great jumping off point. I loved telling a short piece about me that just came out. I’m glad I did this prompt, I did a happy story, not anything to do with health. I think we all need a break sometimes.
Word Cloud – but I’ll take my own take on it. I’d rather do a collage I created, and will probably do more of those.
******I would use many of the prompts from the liked or difficult pile again…with some changes, and some from the Bonus Prompts.*****
Bonus Prompts I liked, I used some of these but didn’t use all of them. (I may use some of these in the future.)
Best doctor’s or hospital stay.
Happy Place
Daily Schedule
In a perfect world
I keep writing because….
personify your health…I liked this because I did a creative approach….that’s the good thing about a lot of these prompts…many you can get inventive with.
I Loved the Prompt.–I used to be…but I’m not any more (this gave me a great outlet, and I shared with many family and friends. It showed things I can no longer do, but I still was able to put a positive spin on it.) This was a great first post for the month for me!
I would like to once again thank WEGO Health for this opportunity. And for all the hard work they have done. This is only the second HAWMC they have sponsored, and I think they did a wonderful job. (one suggestion, perhaps you would like to put out a questionnaire for the participants to suggest some prompts, this would give you a greater pool to work from, and would hopefully provide you with lot’s of great ideas!!)
Who was your favorite fellow blogger?
Maureen from Sunshine and Chaos was a constant support to me thought this past month Encouraging me, and keeping me going, even through the rough spots.
Phylor, from Phylor’s blog was also a great support. Always encouraging.
I’ve found a couple of new favorite bloggers through this adventure. Actually they found me first, but I’m glad they did.
Scattered Feathers – she’s a new blogger who really deserves some attention. Check her out, she’s honest and raw, if you like my style, you’ll love hers. She has hearing loss, and suffers from mental illness. Give her your support.
And one more new follower I have been learning a lot from. Brain Injury Self Rehabilitation this blog is written by a nurse who was brutally attacked by a patient, this attack caused a brain injury. She is on a mission to help others realize there are more people out there with Brain Injuries, and Brain disorders – we do not need to suffer alone. There is hope and help. She gives sound advise, and encouragement. If you have a brain disorder or know someone who does, I highly recommend checking out this blog.
there are many more people I could acknowledge, but there simply isn’t room, and they did just ask for one.
Today’s Prompt: Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think aboutyour 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….Personify your health. If your health focus were a person – what would they be like? Describe them. Visually, emotionally, physically, and personality-wise. What kind of person are they?
I’m again using one of the Bonus Prompts. I liked this one more than the original prompt. However, once again, I took a different take on it. Recently I made a mask showing what I looked like on the outside to most people, and then on the inside I showed my true self. I felt this answered all the questions put forth in this prompt, but with a little creative flair.
Some of you have already seen this, but I think it’s worth repeating, and for those who haven’t, I hope you enjoy!
Outside of Maxk. by W. HolcombeInside if Mask by W. HolcombeMask Inside Top W. HolcombeMask Inside Bottom
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*)
A Difficult Challenge - Deciding on treatments.
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.
A small victory, a night when I can cook.
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.
Prompt for today: Health tagline. Give yourself, your blog, your condition, or some aspect of your health a tagline. Makesure it’s catchy!
When I first read this prompt I admit I thought. Really? What you want me to write one line and that’s it?
Hope I came up with something useable.
Ants with Picnic - free download by phillipmartin
So I already have a tag line…. My blog is called Picnic With Ants – I think my tag line would be “The Ants That Bite.”
It’s all explained in my side bar. I try to think of my life as basically good, a picnic…but then the ants arrive and a few bite me in the butt.
I have too many chronic illnesses to focus on just one. So the Ants focus on all of them, they all bite me in the butt….some more than others. Some literally, like the chronic tail bone pain – Whew is that a pain in the butt!
So I guess that’s it.
I saw this ad for a t-shirt a long time ago, and I think it personifies me to a tee. I will leave it with you….although it has nothing to do with ants. : )
Today I’m using a prompt from the Extra prompts they sent us.
Daily Schedule. Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!
photo courtesy of istockphoto.com
Honestly, I don’t have a set schedule for any day. My days are ruled by my conditions. If I’m having a day filled with vertigo, or migraines I spend the day in bed. If my hearing is way down, I spend the day as alone as possible. I often have doctor’s appointments. My days change from one to the next, a lot. If I’m feeling a bit better, I do more….
Here’s a recent weekend day.
After a restless nights sleep I awake around 9am with a blinding headache. I’m seeing double, with shadow spots on the walls. I take the medication that should lower my CSF pressure(cerebrospinal fluid pressure), and wait to see if it will relieve the pain. My husband brings me some breakfast in bed, along with the rest of my morning medications. The headache has not eased. Finally, I decide I should take some migraine and pain medication also. I try to sleep some more, this time sitting up, hoping my CSF pressure will lessen.
Noon – The headache is still there but much better, I’m hungry, but not sure I’m steady enough to go down the stairs. My husband brings me lunch. I decide to check my email, and do some things on the computer. Focusing up close is much easier than focusing at a distance.
2pm – Time for my next CSF pressure pill. I’m feeling much better, and steadier. We decide to take advantage of this time feeling a bit better. I want to go to the local Co-Op to pick up vegetables and meat for dinners for the week. We had a good trip to the store, and a nice ride home.
4pm – Home. I’m tired just from the little bit of shopping we did, and the ride. I help put the groceries away, and start to plan dinner. I turn and feel the world move. Oh no.
5pm – 9:30pm I have vertigo. This vertigo is caused by the Intracranial Hypertension, not the Meniere’s. I can tell because if I keep my head in one position and concentrate on something still close to me I will stop spinning, but if I move, the vertigo returns. If I was having a vertigo attack from Meniere’s I would not be able to stop it, no matter what.
9:30pm I am completely exhausted from the vertigo attack. Finally, I can move. I eat a little something, and head to bed….with a lot of help from my husband. Take my nightly medications, and try to sleep.
This is a somewhat normal day. I don’t always have vertigo. I do normally wake up with a blinding headache that often takes hours to get under control. And we always try to take advantage of any time that I’m feeling well enough to do something. (I know going grocery shopping doesn’t sound exciting to most, but I love to cook, so shopping for food is exciting to me.)
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.)
photo from Flicker Sharing by earthunderheaven (to find more of their work click on the photo.)
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. : )
Picnic with Ants 