I’m sorry to my followers, my friends, that I have not been around much. I am a bit overwhelmed by so much that has been going on that I haven’t told you about, and I’ve been sucked into a depressive state. I keep trying to pull out of it, I even have a new medication, but I’m still just blah. I wake up in the morning, and often feel awful for the first hour or two, it takes me a while to feel like a real person, then when I actually feel alright, I think what reason do I have to get out of bed?
I don’t find pleasure in the things I used to be so passionate about, like art, cooking, blogging….ect. I do still find pleasure in reading, perhaps it is an escape? I also still find pleasure with my husband, just being next to him makes me feel better.
I will be seeing my psych. tomorrow, I’ll discuss this with him, and we’ll see if I should increase the antidepressant I’m on, or try something else. I’m sure he can help pull me out of this.
If you have been reading my blog for a while, you know that I’m normally very positive. This turn of emotions has hit me like a wall, I don’t feel like myself. I need to get my positive outlook back.
The ironic thing about this, I’m actually much better. I have the weird feelings when I first wake up, but I think that’s because I’ve been horizontal for so long that my cerebrospinal fluid raises a bit, and I have to sit up for a while, and take my medicine before I feel better.
I’m still having migraines, but they aren’t as intense. I’m still having Migraine Associated Vertigo (MAV), but not as often, and when I do it doesn’t last as long. Maybe I’m just getting the medication in faster, all I know is it’s better. I’m still having chronic migraines though, yes they are better, but they still knock me out of commission for a while, so my doctor is starting a new treatment plan. We want to get it where I’m having much fewer migraines, not just less intense.
No Meniere’s vertigo!
My surgery has FINALLY been scheduled! July 19th, I will receive my bionic ear! (my implant is from Advanced Bionics…so I can literally say I will have a bionic ear!) Two weeks after surgery they will turn on the cochlear implant. (I wrote a post telling all about the processors I chose, but that’s the one WordPress deleted half of, so I need to finish it again…I will try to do that soon, so you can see what will be hooked to the side of my head. I’m sure you are all eager to see that! : ) Just wait until you see it actually on my head!
Other things that have been happening: We got new carpet. We replaced our worn out couch. We had our mattress replaced under warranty…it wouldn’t bounce back. So the house is full of chemical smells, and I’m so sick! I keep trying to stay in rooms with less chemical smells, but I’m still coughing so much my throat is sore, my head hurts, I’m so tired all the time….ect. I’ll be so happy when I can breathe in my own house again!
Tell me is it normal to feel down when you start feeling better? Yes, I’m feeling better but not to the point that I can do everything I want. Since I feel better, I’ve begun to resent that I can’t drive, I can’t have that independence. I hate that Stuart has to be with me for me to leave the house. I know with the uncertainty of vertigo it’s even dangerous for me to walk around the block by my self. I resent that I have to be careful of all the food that I eat. We took a little trip this weekend, and it was so very hard to find food that I could eat. I felt horrible, every time we wanted to eat it was such an ordeal. It’s not so bad locally, we know places that are safe, but I didn’t think about not being able to find safe food on the road. We tried so hard to make sure everything I ate was safe for me, but still I got sick. On the way home we had to stop numerous times so I could run to the bathroom. I was so embarrassed to have that happen in a public restroom. eww.
I used to find it a challenge and a pleasure to cook even with my restrictions. I thought it was interesting to figure out how to change a recipe so I could eat it. Now I resent that I can’t eat some things. That I can’t cook whatever I want. I don’t like this feeling.
Oh, I almost forgot, I had a birthday. July 2nd! My husband is a dear man, he celebrated my birthday for 4 days, and I’m getting my main present today! So, still celebrating… he’s done something sweet for me every day since Friday! He really made up for the one time he forgot my birthday! haha Funny thing, I thought I was turning 50 this year. Stuart and I were walking along one day last month and mentioned my birthday, I said that this one was a big one, he asked why 49 was big for me, I said, “No, I’ll be 50!” He looked at me, and said “No Wendy you will just be 49″. I was sure I was going to be 50! He said, “What year is it?” I said, 2012….Ooooh! I guess I’ll be 50 next year.” How silly was that? Here I’d been telling people for months that I was turning 50 this year! hahaha
Well, I think that’s all I can purge out of myself at the moment.
I will try my best to blog more often, I really want to become passionate about it again. I’ve missed my friends.
Today’s Prompt: Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/
I did a little bit of a different take on this prompt. I hope you like it.
Prompt for today….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!
Today’s Prompt: Health Activist Choice Day 2! Write about whatever you like.
The losses, so many losses
my mind struggles to comprehend.
The year has been a blur
I cannot keep up with the grief.
My life has been about strength,
never staying down for long.
Now I am broken, the pieces are scattered,
missing pieces never to be found.
The light in my soul is barely a flicker,
the flame will not light the way.
Until reached, no one knows what their “breaking point’ is,
now I know mine.
I can lose many parts of me,
always finding the strength to change and carry on.
Add the loss of a love so dear,
and I cannot find the strength.
If not for the love of another,
my life would have no meaning.
Grief, anger, love, tears, memories…
all things we share, with each loss.
We lean on each other,
each needing the strength.
The strength to live with,
all the losses.
Today’s Prompt: Pinboard. Create a pinterest board for your health focus. Pin 3 things. What did you
pin? Share the images in a post and explain why you chose them.
I chose to pin a few more than 3 things, and probably could have done more. However, I only pinned photos and artwork I created. I chose these images because I felt they were closer to me and expressed what I wanted to say many times.
Here are the photo’s I shared on my Pinterest Board, titled, My Illnesses….pluses and minuses.
**warning to readers….this is a graphic letter. Things I really wish someone would have told me and helped me with, some may be offended by the frankness. There may be some major mistakes in the writing, I tried to read it over, but just couldn’t.
Dear 16 year old me.
Hi Wendy….You won’t believe it, but I am now almost 50 years old.
I know you are confused. I know it’s hard to believe that I could be writing you from the future, but please just sit back and listen. I hope to help make these coming times just a little bit easier. Please know, I love you, with all my heart. You will go through times that you don’t like yourself very much, but know you will. I’m just hoping you can start a bit sooner.
Recently you have been very depressed, and confused. Some days you are very happy, a bit euphoric even, and other days you don’t think you can carry on. Everyone thinks you are going though normal teenage hormones, just growing up. You are, but you are also dealing with a bit more. You need to make someone listen. Your mother has always been your best advocate. Sit down with her, talk honestly. Tell her just how depressed you have been and that you need to see a mental health professional. I’ll be blunt, you have Bipolar disorder. Don’t worry, you can be treated. But hopefully, you can catch this much earlier than I did the first time around. In my time line you went through many hard years and many heart breaks. You still live with the fall out from those times. If you can get help now perhaps your life can go much smoother. (much easier.)
If you can’t, there is one thing I suggest…STRONGLY. Be careful with your sex life. You will feel, once you are “soiled”, it isn’t worth the fight. It is. YOU ARE! You will lose your self esteem. You will lose so much. When you get into therapy, finally, you will have a good therapist, but she will not understand. She will acknowledge your past problems with abuse and see you think a man will only care if you give yourself to him. She will say. Sex is ok, but only if you really want to do it. You will often feel that you really want to do it. Please Wait. Wait many times. Wait until the relationship is so much more. Do not jump into a sexual relationship until the relationship is more than just sex. Please take this more seriously than you can believe. It will change your life!!!
Stay close to your mother. Give her a break much more often than you do. Take her off the pedestal. She can’t read your mind, STOP being so passive aggressive. It carries on to other relationships and you don’t need that. You lose her much too early. She encourages you and stays by your side through everything, but unfortunately she doesn’t live to see you completely stable. Savor the years you have. You will be so very close, but you do put her through many worries. Try to lessen those for both of you.
You will start to have some health issues. Hearing issues, vertigo….you think you are having food poison many times…there are many breaks between these sicknesses. You are heading toward a hard fight with a hearing disorder that will cause a lot of balance issues. There really isn’t anything they could do if you found out earlier. So don’t sweat they you don’t find out until later. But if you find out earlier, it might help you in your career.
Dare to be braver. Work harder on your art if you REALLY want to. Don’t be so scared to fail. You will only have a few years to be able to work at this. So if you fail, it’s not a big deal. But if you succeed, and I really think you could, think of how you would feel about you! I believe in you. Looking back, you could have done so much more. Work on your muse! Find what inspires you the most! (oh and in college…start out as an Art Major. add in Art Education, but don’t waste time, if you do you will run out of financial aid before you know it and will not get the education you deserve.
You will have some health issues that change your life….so you change your life to go along with it. You still have a good life. You have a wonderful life, even with everything that you go through, you find a way to make your life meaningful.
You do meet the most wonderful man, and have a joyous life with him…but it won’t happen until you are in your late 30′s, you marry at 41. Do not worry. It happens. Don’t fret. And don’t think there is something wrong with you. Focus on your happiness. This man will stand beside you through all your health issues. You will have a better relationship than you ever thought imaginable. He is worth waiting for.
Focus on YOU.
Study things you want to learn.
Dive into your ART.
Study Yoga…you will love it.
Become as healthy as you can, you will need it later.
Take care of you…And trust your heart…don’t listen to those who are just looking for fun for the moment.
Hopefully, if you listen to this, and get treated early, you will have an easier life.
Don’t take things so seriously….however, when you believe in something, don’t let others pull you away from your beliefs. In that same vein….do not get too caught up in other people’s beliefs without really looking into them. Make sure they are what you believe deep in your heart, and the that the facts are sound.
And Cry Less.
Look for Beauty.
And appreciate Life.
From your future self, who hopes things turn out a bit differently.
With unconditional love, always and forever.
Sharon at After Gadget, is hosting the PFAM carnival this time. She posed the question:
What makes someone a patient? When, and in what contexts, do you think of yourself as a patient, and when do you not?
I thought, and thought, and thought….and I came up with…First -
What makes someone a patient? So I looked it up. (I looked it up in a few sources and came up with generally the same answer, but I liked Wikipedia’s answer the best. The original meaning of the word patient is “one who suffers”. The meaning today” is any recipient of healthcare services.”
With this in mind: Yes, I am a Patient. According to both definitions.
Second part: When, and in what contexts, do you think of yourself as a patient, and when do you not?
For that I decided….well, it depends. I know this is a very insightful answer, so I will elaborate. Bear with me, I ramble when thinking about things like this…heck, if you read this blog, you know I ramble often. : )
A lot of the time I do consider myself a patient. My treatments aren’t over, I still have plenty of doctor appointments, I still take a ton of medication, I’m still dependent on someone else, so yes I’m a patient. I had a lot of trouble with my husband being my caregiver for a while. I felt like I was no longer his wife, I was his patient. What could I do for him? He has been everything to me. He not only provides for us, he does the housework, the meals, bathes me, helps me with personal hygiene. Many…many times he’s held my head and calmed me when I had vertigo for hours and just kept throwing up. He’s put in many suppositories, and every time I feel horrible about it, and I cry. I often feel like we’ve changed, I’m now his patient. But I’m more than that..
Often, we will have touching moments together, we’ll curl up and snuggle, he’ll tell me how hot I am…just today he was helping me and brushed my breast, and said, “you know I only did it that way so I could touch your boob.” He makes light of my illness, not in a bad way, he doesn’t dismiss it, but he never let’s it get in the way of being my husband first. He’s simply thankful he can be here for me, just as I would be for him. We enjoy the wife/husband/friend relationship as much as we can. He NEVER lets me forget that I’m more to him than someone he has to take care of.
Yes, I am a patient. But I’m so much more than that!
A Wife. A Friend. An Advocate. A mom to my Furry Babies, Sandy and Max.
And I’m an artist!
Sometimes I want to shout loud enough for all the world to hear:
I AM MORE THAN MY ILLNESS!
But Sharon asked more than that. She asked how I refer to myself. That depends on who I’m talking to.
If I’m meeting someone only Stuart knows, I refer to myself as Stuart’s wife. If they ask what I do, Stuart usually says, “She’s an artist.” He’s proud of me. But if he doesn’t, I usually do say I’m an artist. If the conversation persist for a long time, I may say that I’m not a professional artist right now due to my health. (If you’d like to see some of my work, see my other blog: Create to Heal.)
If I’m talking to a friend, I’m just Wendy. However, recently I felt I had to explain a few things to some of my family and friends. People just didn’t seem to get it. I was told I “deserved better”, and I should “find new doctors”, and “that insanity is trying the same thing over and over and expecting different results”. The treatment I’m undergoing has given me different results. It usually works (on at least some of my symptoms), at least for a little while, once it worked for almost 5 months…I want to get back to that.
So I wrote a detailed explanation to them, letting them know that I have a CHRONIC Illness, it is not going away. I explained exactly what Meniere’s is, and how I’m in the advanced stages of bi-lateral Meniere’s. I know I’ve explained it before, but people seem to think it will go away.
I may not deserve this, but who does? No one I’ve ever met. I explained that I have some of the best doctors in the world helping me, doing much more to try to help me with this disease than most doctors would. Well, you don’t need to hear the whole note. The point is, I felt I had to point out that I am a patient. I didn’t use those words, though sometimes I do. I’m a Meniere’s patient.
Often when I meet people for the first time, I’ll try to hear them or read their lips before I announce I’m hearing impaired. Usually, I have to say, “I’m sorry I’m hearing impaired, can you look straight at me when you talk and talk slowly so I can understand you?” That usually works, but it’s funny to me how fast people forget, they try to do what I ask, then they will look away, and forget all about it.
It’s hard in hospitals or doctor’s offices because they aren’t supposed to talk softly to insure the patient’s privacy. So I say very loudly, so they know I need to hear them, that I have Meniere’s and I need you to talk loudly, look at me….. Often, hubby has to translate.
When I’m talking to or about some of my Chronic Illness friends, that how I refer to both. I’m a chronic illness blogger, I have friends with a chronic illness….we don’t all have the same thing, but we are kindred spirits just the same. We get it.
I’m not sure I really answered Sharon’s questions, but it made me think.
In my heart, I’m a wife first, because my husband is so very dear to me. I’m mommy to Sandy and Max…my furry babies…again because they are so dear to me. The rests are almost tied. I’m a friend, I’m a blogger, I’m an advocate for my illnesses, and for myself….and last but certainly not least I’m an artist.
I’m sure some would give me even more titles, but these will do for now.
Please make sure and stop by Sharon’s blog, more than once her post have moved me, made me cry, and made me think!
The PFAM carnival will be up on her blog After Gadget, on Wednesday October 26th. Check it out, and think….How do you define yourself?
It’s the little things that make me happy right now. I felt so proud of myself today.
I spent the entire day out of bed. I even got my meals for myself…well, all except breakfast, Stuart was making that for me when I got up.
The meals I got for myself were just left overs, but I did it!
I walked by myself, and cleaned myself up…all by myself. (yes, these are things I haven’t been able to do without help.)
I filled 5 pages in my sketch pad today.
My internal clock is still way out of whack. I can’t seem to get to sleep before 3 or 4am. …and then don’t get up until about noon. If I try to get up earlier so I can go to bed earlier, it just doesn’t work. Either, I feel like crap all day, and risk having an attack because I didn’t get enough sleep. Or, I still can’t get to sleep until the wee hours of the morning. Ugh. Guess I’ll talk to my doc about it next time. I hate taking something to help me sleep, but perhaps I could take something for a little while to get my clock back on schedule.
I hope I have more days like today, and continue to feel better. It’s been a rough road lately….but I’m making my way down it.
I feel so guilty. I’ve told so many people about the success I was having after having my CSF leaks fixed. I know of a few people who sought out the treatment because of me. I’m not saying that I’ve given up, or that I think things won’t get better. But right now I’m not sure, and I’m just afraid I made it seem too easy. I think I’ve always let everyone know this is an experimental treatment. However, it was working so well for me. I was normal again. I just want for all of us who have that feeling…being normal. Did I give people false hope?
Even if this treatment ends up not working for me, I have always said, I hope they will learn something from this, and can help others.
Once again, I feel at a loss for the right words to express how I’m feeling.
I’m full of guilt, fear, and anger, yet…I’m still full of hope, and feel like I’ve found a part of me that has been missing for a long time.
I hope you guys understand.
After all the warnings from previous procedures that my pressure could spike afterward…and it didn’t…well, I thought it just wasn’t going to happen to me.
My pressure spiked, and my head has been killing me. I’m taking Diamox to lower my pressure, and that scared the bejebez out of me. (No, I have no idea how to spell Bejebez but if you use phonics, it sounds right…doesn’t it?) Any way, I’m petrified that I’ll get my pressure too low, and start spinning and all of that mess.
I’m having the weirdest tinnitus in my left ear. Sounds like a rail road train, (sometimes), other times, it sounds like a very loud squeaky swing….and just all kids of things…but that’s not the weird part. It changes if I put my hand near my ear. If I touch around my ear, it gets louder! And if I hic-up (which I seem to do very often), it has a very loud DING-DONG. Driving me insane.
Think I may have taken too much Diamox yesterday (Dr. Gray was pretty vague on how much to take, take it until the headache stops. Up to 1500mg at one time…notice not in one day…but at one time.) Feeling kind of lost there, but since I couldn’t actually talk to her, well, Stuart doesn’t think to ask some things. But yesterday, the world was spinning, I was amazed I wasn’t throwing up. The world was really moving!!
I’ve spent the last 6 days in bed. Well,, I tried to get up to the couch a couple of times…so I was probably up for about 3 hours total.
I feel so helpless. Stuart usually has to help me get to the bathroom…even pull my pants down…how humiliating! And then the most humiliating thing…and I really thought I was better about this…is when he has to give me a suppository. I just feel so …. dependent…helpless…and just icky. When your husband sees you naked, it shouldn’t be to put medication up your butt! Or help you go to the bathroom! Yuck.
I feel like I have some terminal illness, and I’m just waiting to die. It reminds me so much about taking care of my mother when she was so sick. I know she never planned for her daughter to have to do private things for her.
And to top it all off, my hearing aid BROKE! For the second time!
You may remember this picture below when I was showing off my new hearing aids:
For the second time now, I was cleaning my hearing aid, just rubbing it gently with a tissue, and the little part that holds it in your hear, has snapped off. I’d only had the second hearing aid for about a week. I’m so ticked! I’m asking them to make me a new one out of the same stuff the right one is made from. It is a much sturdier material. The clear plastic, just cracks, like old dried up plastic does. It’s so strange. I’m getting a hearing test on Sept. 6th, and they will order the new hearing aid then. (I think they have to make a new mold for this type of insert.)
I think that’s all for today.
I did want to mention, If you liked seeing and hearing about how my art has been helping me through all of this, I started a new blog that just talks about that. It’s called Create To Heal . Come see me, let me know what you think. Join me in my journey. Create Art. Have Fun. Feel Better!
I’m having a problem with Anger Issues lately.
I realize that it stems from the situation I’m in right now. But, that doesn’t help much.
I hate feeling angry.
So I decided to be very silly!
One good thing about not being able to do anything for…has it been over a month now? Dang! Oh, back to the good thing, my finger nails look great! I mentioned this to a friend of mine, and he suggested purple polish….a few days later, I added Polka Dots!
Now, you know it makes you smile to think that a 48 year old woman has Purple Finger Nails, with Bright Green Polka Dots!
**Note – my husband said that it didn’t surprise him at all. Just as the orange hair didn’t surprise him. ”It’s just you!” He also warned that if we ever are able to foster, that our child will think he or she has a really strange mom. I disagree, I think they will think I’m a really cool mom! (yeah, right…how many kids really think their parents are cool?)