I must apologize for being away so long I feel like I’ve just been saying the same thing for so long. I don’t feel good….blah, blah, blah.
Remember in my last post I mentioned having a sore throat? Well I got Thrush, a yeast infection in your mouth and throat. Thrush is often caused by a lowered immune system, and one often gets it when you have been on antibiotics and/or steroids a lot. You may also remember that I mentioned…at least I believe I said it on here, that I wasn’t happy by how often I had been on both antibiotics and steroids since I’ve been in Tucson. So…Thrush. Not fun. First it hurt a lot, was very raw and even looked like it was bleeding, then it turned white. I had white spots all over my mouth, tongue and the back of my throat. I decided to treat it more naturally instead of more medication. I’m taking acidophiles, eating yogurt, and gargling with diluted hydrogen peroxide. (this was the recommendation on the Mayo Clinic site). It gets much better then it seems to get a bit worse again (however, it is much, much better than it was in the beginning), I finally put the connection between how my thrush behaved and how much I had to use my nebulizer….duh, it is a steroid too. So now when I need to use the nebulizer I rinse my mouth well afterward, and gargle with the dilution of water and hydrogen peroxide. I think this is going to work!!
My migraines have been much more present. I’m also having much more vertigo. I think most of it is Migraine Associated Vertigo (MAV). When one has vertigo with Meniere’s it is rotational. Lately I’ve been having vertigo that goes in all kind of directions. Yesterday it was going down….well it’s hard to explain…the room kept sliding down and then it was if it went behind me and would come back around and slide down again. Oh I was so sick…but I didn’t throw up…yay. I did have a lot of acid reflux and burping…and running to the bathroom, which is very hard when you can’t walk alone, and my walker doesn’t fit through the bathroom door. (thank you Stuart, you are the best). With everything that has been happening, all I want to do is sleep. One day I slept 18 hours…it may have been more I’m not sure, I’d wake up when I had to go to the bathroom, and when I was hungry…and that was all. Many days I’m sleeping at least 15 hours. I sleep about 12 hours a night (but I do wake up a lot), and take at least 2 naps. It’s crazy! I’m just falling asleep all the time.
I got a call from the doctor with lab results from my urine….they sent it off to a more advanced lab to see about an infection. It said I didn’t have an infection. So why did it hurt so very bad? And yesterday it started hurting, just a little, again. The doctor suggested I go to a urologist if the pain continues or comes back….I really don’t want to do that in Tucson. We’ll be leaving in less than 3 weeks. I think it will wait until we get home. I’m still passing urine just fine and they found nothing abnormal in it…it’s just painful. Yep, it will wait until I can see my doctors.
I was able to go to my niece’s birthday party on Saturday. I was so excited. But it was soooo hard. It was in a very noisy place, so I started having a sound headache almost immediately. I couldn’t understand what was being said. I don’t think my niece has ever been told about my hearing loss, but when I told her I couldn’t hear well in there she would motion for me to do things she wanted. For example, she wanted me to play one of the games, she gave me a token and pointed to where it went in, then pointed to the button I was to push for the game. It made my heart swell that she was so understanding of my needs. It also breaks my heart when I have to say goodbye to her, every time she will start to cry…but I told her that we were not leaving for long, I’d see her again soon. I hope I can. Her parents aren’t very accommodating.
Let me rewind a little bit…the day before the party Stuart and I went to the mall to get our niece a gift from the Disney Store (she loves the princesses). We didn’t walk around much, but my hips and lower back were in so much pain before we left, it was horrible. It’s really hard to walk much when you have bad hips…and I haven’t seen my massage therapist in a long time. So it was hard for me to stand much at the party. I was happy I was able to go and do a little with our niece, but sad because I couldn’t do as much as I would have liked.
Each night before i go to sleep I think of a post I want to write, then the next day I often just can’t. My migraines are so severe lately that I can’t stand to get on the computer…I can’t stand any light. And of course when I have vertigo, there is no looking at the words on a computer screen…or anywhere else for that matter. I hope to get many of those posts written soon…..here’s a preview….
- Photos I haven’t been able to post.
- Chronic Illness and Personal Hygiene
- More about my other chronic illnesses…..
see you soon!
September 10 -16 is National Invisible Awareness Week – If you’d like to get involved check out the official site.
30 things about my illness you may not know.
(warning, some answers may give too much information, but it’s not detailed)
- The illness I live with is: The main illnesses I live with are Meniere’s, chronic Migraines, Bipolar I disorder, and chronic hip and pelvic pain. If you are interested in my other illnesses please see the the tab above titled The Ants That Bite.
- I was diagnosed with it in the year: I don’t remember any more. I think I was diagnosed with Meniere’s in 2001, Migraines (I’m not really sure, I’ve had doctors tell me on and off since my teens that I have migraines, but they became chronic in my late 20′s…I’m 49 now), chronic hip pain and pelvic pain – they haven’t figured out what is causing all the pain, so no diagnosis. Bipolar I – 1990 then was told they were wrong – re-diagnosed in 1994.
- But I had symptoms since: Meniere’s – the first attack I remember was in 1993. Migraines – the first one I remember, I was 11. The pelvic pain – in my early 30′s, in the mid 1990′s. The hip pain – 2008. Bipolar – in my teens.
- The biggest adjustment I’ve had to make is: These are a few major ones for me…. Losing my hearing. Not being able to drive. Not seeing my friends like I used to. Realizing that I will never be cured. Not being able to have a sex life without pain. (but I’ve dealt with, or am dealing with all of these. They will not keep me down.)
- Most people assume: I can do much more than I can, after all, I don’t “look” sick. And some assume I use my illness to get out of social situations, but honestly I hate being so solitary
- The hardest part about mornings are: Never knowing what the day will bring. I often wake up with a blinding headache, I know what that day will bring. But if I wake up feeling decent I never know if I’ll continue to feel that way, or if I’ll be hit with a Meniere’s attack or Migraine. However, I try to make the most out of every day.
- My favorite medical TV show is: Ummm, funny, I used to watch some medical TV shows, but I don’t any longer. I think I see too much of the medical community in person.
- A gadget I couldn’t live without is: I suppose I could “live” with out most gadgets, but there are some I wouldn’t want to! My Cochlear Implant, I can hear so much more now. My laptop -so many of my friends are in there!
- The hardest part about nights are: Trying to sleep, and trying to stay asleep. Fear. Fear of having an attack just as I’m falling asleep (this happens more than I’d like to admit), fear of waking up with a blinding headache……However, each night before I sleep I acknowledge my gratitude for the day, and plan what I’d like to do the next day. I always have hope I will have a good day, and if I don’t I still know I’ll get something out of it.
- Each day I take __ pills & vitamins. (No comments, please) 18 daily (this included the total number, not different medications), 5 as needed, 4 vitamins daily, and one B12 shot a week.
- Regarding alternative treatments I: have tried many, including chiropractic, acupuncture, certain vitamin routines…. I found medical massage helps my migraines and hip pain a lot. I also use a special diet to treat gluten and fructose intolerance.
- If I had to choose between an invisible illness or visible I would choose: I don’t think anyone would choose to have an illness, but I’ll deal with the hand I’ve been dealt.
- Regarding working and career: I don’t work. I don’t have a career. Takes a lot out of conversations with others. My doctor suggested I look into filing for disability, but I haven’t done it yet.
- People would be surprised to know: I often don’t wash my hair for a month or more. Water on my head is a trigger for me, especially if I have to close my eyes. Luckily, my hair is pretty dry, and it’s long so I just tie it back.
- The hardest thing to accept about my new reality has been: There are a lot of times I have to say” I can’t” or “no” to people…and to myself. Losing most of my independence. Not being able to drive. And not being able to have a normal sex life.
- Something I never thought I could do with my illness that I did was: Find the positive. Become my own advocate. Fire a doctor.
- The commercials about my illness: The only one of my illnesses I’ve seen commercials for is Migraines. Commercials are always drug companies wanting you to talk to your doctor about their drug. I’m not comfortable with this, and normally the side effects they list are pretty scary.
- Something I really miss doing since I was diagnosed is: I miss being able to go places alone. (the answer to this question changes often, but right now, not being able to go anywhere alone is very difficult.)
- It was really hard to have to give up: My hearing. Even with technological help, I have a cochlear implant (CI) and a hearing aid, it is still very hard to hear at times. I know my hearing with the CI will get better, but it has been very hard to loose all my hearing in one ear, and almost all of it in the other. Without technology, I can’t hear anything.
- A new hobby I have taken up since my diagnosis is: Blogging. Reading a lot! I’ve always liked to read, but now it’s almost an obsession. (thank you to Kym for my Kindle! Oh. another gadget I wouldn’t want to live without.)
- If I could have one day of feeling normal again I would: I would be so very thankful!! Then I’d spend a day pampering my husband, in and out of bed. ; )
- My illness has taught me: To be my own advocate. To be more tolerant…I thought I was tolerant before, but I realize I needed a wake up call on that one. That I’m not alone….this one relieves me because I needed to feel that someone understood, but it makes me so sad that others have to go through what I have. And that I can handle much more than I ever thought I could.
- Want to know a secret? One thing people say that gets under my skin is: Any form of, telling me I’ll get better. “When you get better….”, “You will beat this….” NO, I won’t. This doesn’t go away. I may be able to find something to make it more tolerable, but it will never go away. And often treatments that work, stop working. I also hate it when people say, “You don’t deserve this” I know they are trying to be kind….but I never thought I deserved this! And one more….”But you look so good.“
- But I love it when people: Tell me how they are doing, want my opinion, want to talk to me as a friend…..Don’t get me wrong, I don’t mind if someone asks about my illness, if they are interested and want to know more about it. But, sometimes I feel like people forget I’m anything more than my illness.
- My favorite motto, scripture, quote that gets me through tough times is: This may not be the life I expected, so I’m changing my expectations. I don’t know if this is a quote or anything, it’s simply something I thought one day and it has helped me through accepting a lot of things that have had to change.
- When someone is diagnosed I’d like to tell them: Often people who have been recently diagnosed find my blog and it scares them, so I start off telling people: Everyone’s journey with Meniere’s is different. Most do not get to the stage I’m at, so please don’t think you are going to lose your hearing….or any number of things I’ve been though. I’m in the very rare group. I let them know there are many treatments to keep Meniere’s under control, and point them to sites and other bloggers who can give a different perspective. Most importantly, I assure them, they are not alone. They can contact me any time, and there are online groups.
- Something that has surprised me about living with an illness is: That my husband and I have gotten even closer. Thank you to our therapist, I think having to go to a therapist about all of this surprised me too. I was not handling losing my independence very well, and hubby wasn’t communicating very well. But by going to a therapist we began to communicate out needs much easier, and recognize our needs. Another big surprise is that people will reach out to me. I’m very surprised that I’ve touched people, and made some honest friendships with people I’ve never met.
- The nicest thing someone did for me when I wasn’t feeling well was: (This does not include things my husband does for me) Come to visit me. It doesn’t happen often, but I do enjoy other people’s company. I hate that I often have to cancel when someone wants to do something with me. I’m already so isolated, and if I have to cancel people often think I don’t want to see them, or I’m just too much trouble. I don’t blame them, most of my friends have families, and they have to work their schedule around a lot of things. So missing a visit makes it harder to make plans the next time.
- I’m involved with Invisible Illness Week because: Because I have more than one. Some people I love and care about have invisible illnesses. We need to let people know we are still people, but don’t judge us by how we look.
- The fact that you read this list makes me feel: That you care, and maybe you understand some things about me you didn’t before.
Prompt for today: Health tagline. Give yourself, your blog, your condition, or some aspect of your health a tagline. Make sure 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.
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. : )
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. : )
This has always been a bad list for me.
Do I assume my necessities are taken care of, like food, water, shelter…ect? Do I assume I have my husband and my pets? Because if I need all of that, then there goes the 10 things right there!
I was once asked, “You were stranded on a desert island, you were allowed to take all your necessities, you forgot one important item, what would you freak out about?” My first thought….”I hope it wasn’t my toothbrush!” Strange thing, if I’m stuck and could only brush or floss, I’d floss. so what was I thinking? Take care of those gums! Silly girl! I guess I should have said, drinkable water, or something smart like that, but I kind of assume you could find that somewhere. Am I naive?
So for this question, I’m going to assume I have everything that is necessary for life….I mean to sustain life. And all my medications and such, including my hearing aid, and glasses. But only list those things I feel I couldn’t live without, even though technically I could. (and I’m not including my loved ones, or my dental hygiene products, we know how I feel about that, I’m going to assume those are all included, this wouldn’t be much fun if all you read was a bunch of list about, oh I’d take my husband, my cat, my son……)….So let’s have more fun than that. Yes I think I’ll be listing more, what semi-luxuries could I not live without! (Please Note! The Main thing in my life I could not LIVE without is my HUSBAND! But anyone who knows anything about me, knows that!!)
In no particular order:
- I said no particular order…but this one is NUMBER ONE!! Massages from Kelly! She has literally save me in many ways! I honestly believe I would have had hip surgery again if it wasn’t for her, and I think my headaches, and neck pain would be much, much worse. When we moved to Durham, I had to give up a wonderful massage therapist I was seeing because the drive was just too hard on me. I went for a long time with no massages. Then I decided to surprise my husband with a massage as a thank you gift for the amazing things he does for me. We randomly found this place and randomly found Kelly. She has researched my conditions, has worked with me, and come when I’ve needed. She has gone way beyond what is expected of a massage therapist, and their prices are very reasonable. I could not live without Kelly.
- Hot Baths – often with Epsom Salts.
- Ice Packs – for those really bad headaches
- My emergency pack for when I have a Meniere’s Vertigo attack.- (filled with bottles of water, wash cloths, plastic bags, emergency meds, a card explaining what is happening….)
- My cell phone for emergencies. – (we must be in a place where I have reception, and I can charge my phone, and I have the charger…no loop holes here OK?) I can’t talk on the phone any longer, but if I need help, it has an emergency button, or I can push one button and call my husband.
- My computer, and a way to power it and hook it up to a network, and anything it needs with high-speed internet. (yes, I’m being thorough there, I’ve seen too many movies where people make a wish like, I want a computer, then have no way to run it.) – I must have access to the internet. all my friends are in my computer. : )
- Monkey, Monkey, Monkey – or just Monkey to his friends. Yes I have a stuffed animal who calms me when the Intracranial Hypertension or Meniere’s or pain from any of my chronic conditions – migraines, pelvic pain, GI issues….ect…. When any of this gets too much. Monkey is there to dry my tears to hold my head. to be a neck pillow, to just be my Monkey.
- Peppermint Lotion. – OK, yes we are getting in to my luxuries now. At night my hands and feet get very hot. So I use peppermint lotion to cool them off, it helps me go to sleep.
- Burt’s Bees Lip Balm….or possibly a different lip balm that has peppermint, I don’t really like that Burt’s Bees sold out to Clorox…ewww, but they are still made here in Durham, but they aren’t guaranteed gluten free any longer. However, I had a stock pile, so I think mine are still from the old manufacturing practices….anyone know of a good peppermint lip balm that is all natural and gluten free? Oh but back to why this is a necessity…..I use it every night before I sleep, my lips are hot and dry, and I cannot fall asleep with them feeling like that, I just can’t…so I must have a peppermint lip balm.
- Vick’s Mentholatum Vapor Rub – oh, yes I know this is an odd one. But again, in my go to sleep routine. I have a hard time with post nasal drip. I will start coughing in my sleep, and making little hacking noises. If I put a little of this under my nose, it usually takes care of it. It opens my nasal passages and no more drip. If I still have it, I take a Benedryl, and it’s all gone. But it’s wonderful that this makes it so I don’t have to take another pill a lot of the time.
You know I thought I’d have trouble with 10….but I could go on….however, I think I’d be going into the territory I said I wouldn’t.
Oh NO! I didn’t mention any of my art supplies. I could go NO WHERE without a drawing pad and pens!!! NO WHERE!!! What to leave off???? Or do I assume that were in with the necessities of life? They would be for me you know?
Now that will take some serious thought.
Yes, after writing such a positive post about all the things I’ve been doing lately, I’ve spent the last two days in bed.
I have an ear infections, AGAIN! At least I’m pretty darn sure I do. The left ear, the one that I recently had surgery on, started draining more (it has been draining since surgery, this is normal, but it was clear and getting to be less and less. It drains out of my ear because I have a tube in that ear.) It started hurting, and the consistency of the stuff draining out looks like puss. I’ve been running a low-grade fever, mostly at night. And I feel very icky!! Ugh! So the world is very off-balance.
Please, don’t think ill of me, but I have about half a bottle of the Cipro Ear Drops my doc gave me last time, so I am treating myself. (I would normally never do this, but I’ve had so many ear infections, I pretty much know that’s what it is. I know…I’m recovering from surgery and should get it checked, if it’s not better Dr. Kaylie will see it on the 30th.) I just didn’t want to deal with making an appointment, and going to Duke, ect ….ect….just days before I have to go in for blood tests, an MRI, and visit Dr. Kaylie. Also, I didn’t want to suffer all weekend when I could get the medicine started.
Yesterday and today have been a bit rough. I feel like a human gyroscope. My head feels like my brain is lose and moving around. I was sitting on the toilet last night and the tile on the floor wouldn’t keep still. They kept going round and round in a clockwise spin. Ahhhh! I hate this, but at least I’m not throwing up for hours on end.
The weather has also changed, so that is a contributing factor and I’m fighting migraines. To top it all off, I’m just about to start my period. That always throws a wrench in things. Not a happy girl right now, but I know it will get better, so hope is always on the horizon.
Does anyone else have a really hard time going to sleep because of spinning? Even when I’m not feeling off, when I close my eyes and try to go to sleep I will start to feel like I’m moving. I jerk, and have to calm myself. Over an over…I’m actually afraid to try to sleep now. Many nights, I don’t get to sleep until absolute exhaustion overcomes me. Normally between 3am and 6am. Last night was a 6am day.
However, another obstacle to my sleep is pain. Headaches, muscle aches, hips…ect. It’s all worse now that the weather is colder and it’s raining. But I can’t live on pain pills. What to do, what to do? We know sleep aids just don’t work for me….I’d really like a good nights sleep, preferably on a regular basis. Exercise would probably help, but that’s just not possible right now.
Whew…a lot of whining today huh?
Don’t worry, this is just a little bump in the road, one step at a time, one day at a time….the sun is right over the horizon…I can feel it…and know I’ll be back to my normal positive self in no time.
**Please note, I have been reading all my friend’s blog entries, thanks to my new phone, I can read your blog entries anywhere. I really need to acknowledge a couple of posts here, but I haven’t been feeling up to par, and simply haven’t been on the computer as much. I’ll try to catch up on everything soon. But I may miss commenting, please don’t be offended. I’m still reading, and thinking of each and every one of you.
Yay! The Blackout worked!! SOPA and PIPA were dropped by congress today!!! I’m so thrilled!
I’ve had some good days recently, unfortunately today isn’t one. I woke up with a migraine today that has left me feeling icky. Meds worked but left me feeling a bit off….then headache returned. It’s minor right now, waiting to see if I need more meds.
On to the Good Days!
Remember when I said, I was going to take advantage of every good day and live it to the fullest? Well, I’m keeping my promise. Now, what one might call living life to the fullest, and what I call it, may be vastly different things. Just remember for about 6 months I was barely able to get out of bed, so the small things mean the world to me!
Has a wonderful day earlier this week, just enjoying the unseasonable warm weather. As you can see from the photo above, taken from our back yard, it was a beautiful day with a bright blue sky. This color sky is unusual for our neck of the woods, I haven’t seen a sky this blue since moving from California.
On Wednesday had my eyes examined, and have new glasses on the way! Afterward, I didn’t want to go home, so Stuart and I went to the mall. Just window shopping really. He wanted to try on some shoes he was interested in to decide if he really wanted them. He loved them! So, surprise! I ordered them for his birthday. Of course, they arrived today, and I couldn’t wait to give them to him…so he got his birthday present early! (his birthday is February 6th, shh, don’t tell him, but I have another surprise planned.) He’s so thrilled with his shoes, he’s been wearing them ever since he opened the package.
We walked all around the mall and had a nice afternoon together. That night, I was in much pain. My hips and lower back…oh my goodness. I took a hot bath with Epsom Salts, and felt better, but still had a hard time sleeping.
I’ve been in the kitchen quite a bit this week. You all know how much I love that! I have a lot of things to add to Wendy Cooks! We bought some plain ground pork and I made Italian Sausage without onion or garlic! I cooked that with potatoes, and kale. What a nice dinner. The next day I made Sticky Pork Chops. Served those with roasted green beans and rice. Stuart’s feeling spoiled. He’s so happy I’m cooking again. We also made a big pot of chicken stock. (Stuart actually got this one going.)
Yesterday we took the furry babies to the vet. Sandy really just came along for the ride. She did have a pedicure, but the main reason she was there was to calm Max. It’s so funny, Max really loves his dog. If we take him to the vet, he does so much better if Sandy is with him. Max got his annual check-up and shots. Our vet is so in love with our pets. Sandy is referred to as the “Wonder Dog!” If you read my blog regularly you probably know this, but Sandy is 19 years old, she has bladder cancer, cataracts have taken most of her vision, and she’s very hard of hearing. In July of 2010 we were told she had probably 3 months to live, but she may last up to a year. Well, she’s still going strong! Still runs and plays…she acts like a dog less than half her age! Our pets also have very good temperaments. They don’t fight the vet, as long as they are together, and mommy is near they have no troubles.
Last night I had a challenge. We took a friend out to dinner who is moving away for a new job. She wanted steak, so we went to the Texas Roadhouse. If any of you have ever been to a Texas Roadhouse, you know how noisy it can be. Normally they seat us in a booth with a very tall back, it’s much easier for me to hear if there is no noise behind me. This time, we sat in a booth with a low back. It was a challenge for me to hear. Stuart sat to my right, on my hearing aid side. Our friend sat across from me. Luckily, she has a voice I hear pretty well, and she remembers to look at me and speak clearly (most of the time). I think I only had to ask her to repeat something 3 times. Yay! Stuart on the other hand, I could barely hear. It’s amazing how much I depend on lip reading (they call it speech reading now, I don’t know why). We stayed at the restaurant for nearly 3 hours. So,I feel I passed this challenge fairly well. I was so excited! But I know it would not have gone as well with more people, or with someone who has a voice with a frequency I can’t hear well. (I’ll take the victory though! Eating out with a friend, something I haven’t done in a VERY long time.)
Unfortunately, the GI stuff hasn’t gotten better. Looking forward to find out what the dietitian has to say about getting the Fructose Malabsorption under control. I’ll be seeing her Wednesday of next week.
Whew, today is a bit of a rough one. My head hurts. Think I need to get off of the computer and take some more pills. I planed on making Spaghetti tonight with the rest of the Italian sausage. We may have left overs instead. Unless I can talked my dear hubby into making the spaghetti. It’s times like these I wish I could just eat sauce from a jar, but alas, it’s not to be. Plus, homemade is so much better!
I like to think I have a good grasp on things as they are. I appreciate the little things, and change my expectations of life as things change. I try hard not to wallow, or whine, or really miss things I can no longer do. (most things I simply do a different way, or I find something else) Point being I try very hard NOT to dwell on the past. Not to say I don’t have my pity parties, but they don’t usually last long, and I can usually pick myself up pretty quickly.
There is one thing that I miss so very much, and no matter how creative I get, or how much my husband tries, it’sjust not the same.
I miss SEX! That wild, abandon…a night of Passion, sweat, hormones, and sweet, sweet afterglow. The night before last I had a dream…oh what a dream! And when I woke up, I was so sad, and heartbroken that this may never happen again, except in those fleeting dreams. (there is always hope though)
Caution, this is the part where I’ll probably tell way too much information.
There is a series of complications behind our lack…or rather, creative, sex life.
For a while there, I couldn’t have sex without having vertigo. The Meniere’s was just taking over every aspect of my life. But it’s not this illness that causes most of the trouble.
I have chronic pelvic pain, and hip pain. And so far the doctors I’ve seen don’t really know why, or how to fix it. They can’t figure out if the pelvic issues caused the hip (and tailbone) pain, or visa versa.
Caution again: Explicit description of my pelvic pain issues coming.
All of the major causes of pelvic pain have been ruled out…. vulvodynia, endometriosis, fibroids….ect.
I have muscular issues. Vague I know. Within a woman without this problem when she gets excited the muscles in her vagina contract a bit, it’s pleasant, it starts all the juices flowing and you are getting ready…they continue to spasm a bit…in a nice way, until it builds to an orgasm, the muscles spasm, and it feels oh so good. This is what naturally happens to most women.
For me, when I start to get excited, the muscles spasm way too much, and it’s painful. At first just a bit of stinging and uncomofortableness, but even a very passionate kiss, the kind you can suddenly feel in your loins. (I hope you know the kind.) Could cause me to have horrible spasms. Foreplay, oral sex…oh the pain. During actual intercourse, the muscles are stretched, and it hurts less…actually it’s much more enjoyable than any the rest. Most of the time, when I have an orgasm it is intensely painful. I’m talking, want to throw my husband off of me, scream in pain and curl up in the fetal position. Needless to say, I got to the point where I was simply too afraid of this pain, and the emotional turmoil afterward to have any desire to try to have sex.
If this wasn’t enough, now I also have hip pain, so the part that I could enjoy is extremely painful, just in a different area. When having sex, in the missionary position, the pressure from the man on my hip is excruciating. Yes, we’ve gotten creative, I can keep one leg straight sometimes, or we he can enter from behind. (but you know, that position, every single time simply gets old.)
For the vaginal issues, I’ve been to a number of specialist. I’ve had biofeedback (yes they insert a probe inside and read the muscle contractions and you try to learn to release them, I even had one to take home an practice with. But when the extreme spasms only happen when I’m excited, this didn’t work very well.). I’ve had numbing shots in my vagina…that was horrific! I’ve had special internal physical therapy. Muscle relaxers…numbing creams…ect…ect…
Some of these worked, to a point, but only for a while, for some reason they would stop working. None of them took all the pain away.
For the hip issues, I’ve had 2 Arthroscopic surgeries, correcting a torn labrum. It didn’t help. I was seeing one of the top hip specialist in the country, and after the second surgery, and I was still in pain, he did an MRI to make sure nothing was left inside me during surgery…yes this made me feel very confident in my surgeon. Then he called me and told me that he didn’t see anything and he saw no reason for me to come back. ”Yes, he CALLED to tell me this!” I was so stunned. He gave me no hope at all, I’d have to live with it.
I asked around to people who had orthopedic troubles to see what doctor they could recommend. A friend had a very torn up ankle, she is an athlete, and saw a Dr. Jones who made her better than before! (her words) So I called his office. He wanted to see my records and scans, before I came in to see him. He called and told me that hips weren’t his specialty, and after viewing my information he felt another doctor would be able to help me more. A different Dr. Jones. I admired this doctor I’d never met more than I ever did my first surgeon. He looked over my records and films and knew to recommend me to someone with more expertise in this area, and he never charged me a cent.
My new Dr. Jones, sent me to aqua-therapy, and medical massage. I did wonderfully, I started to feel so much better (it didn’t help the pelvic pain, but my hip felt much better)….then I had to move to the gym and harder exercises, all the pain came back in a flood. Dr. Jones was at a loss. All my films showed a little of this and a little of that, but nothing that he could just go in and fix and make it better. I have a little bit of hip displaysia…my IT band is too tight, my Psoas is too tight….but he said I can’t stay in PT and massage for ever. (I thought…why not if it keeps me off out of surgery…but alas insurance wouldn’t pay for it.) By this time, the Meniere’s was demanding all my attention. Dr. Jones thought he could go in and really look to see what was going on, and possibly “release” some of the tension from my IT band and Psoas. But we decided to put this off until I could get the Meniere’s under control. He did prescribe me a ‘drug’ called Limbrel, for the inflammation, I put the word drug in quotes because it’s actually a pharmaceutical food supplement, not a drug per se. I can’t take anti-inflamatories because of stomach issues, and I’m very allergic to Celebrex! It has helped, he also has me on pain killers for the exceptionally rough days. Bad News….my other hip has started giving me the same issues. I haven’t had this looked at yet.
I decided to start seeing a massage therapist on a regular basis and she has really helped my hip. I can walk without a cane! And the day to day pain is much better. But it still hurts to have sex.
When I was younger, I was … how shall I say this …frankly…very sexually active. Much more than I actually should have been, but untreated bipolar can lead to not the best decisions, and I was dealing with a lot of other issues surrounding sex. But we won’t get in to all that.
Let’s just say, with the right partner, sex was very passionate, experimental, and one of the most pleasurable things I’ve ever experienced.
When I first started seeing Stuart we had a very active sex life….Whew, when I think of that, my mind spins. (in a good way!) The pelvic pain had started, but it was mild and I could deal with it. It didn’t really bother me, it was actually kind of pleasurable. Not to say, I love pain, but it was mainly just noticing extra muscle spasms. Then it got worse, and worse, and I started avoiding sex. I was afraid. It was very traumatic, I actually told Stuart to go find it somewhere else. I’d still be here, and still love him, but it wasn’t fair that he was being forced to be celibate because of me. He didn’t like that idea at all, and needless to say, we worked through it. He admits he never thought he’d feel this way about someone, but sex is not that important. It’d be nice if it could be the way it was, but it’s secondary.
I agree, but …. Dang it all I want it like it was, I miss it, and I need it!! I remember in the dream the other night, I whispered in his ear, “Sometimes I want you so bad it hurts.” It’s that ironic or what?
During the special PT, we found that stretching the muscles helps. But I could not get into it, when we had to stretch those muscles right before we could have sex. Talk about no spontaneity. And I felt like it was too medical. We tried to make it more, fun, but I felt inadequate that we had to go through this, and hope it worked.
Then we found a vibrator could really help. Not only could we stretch with it, and it was pleasurable to me, the vibrations calmed the muscles down and I could have an orgasm with minimal and sometimes no pain. But that’s not sex. (If anyone out there has pelvic pain and thinks this may help, please email me and I’ll tell you one of the best tools you can buy…it has saved me.) Sometimes, we can play with it for a while, then have intercourse…but the hip pain is still there. (Damn, can’t I get a break?)
Playing with just the vibrator and having mutual masterbation was fun at first, but I really, really miss just wild sex. Getting all hot and heavy, and throwing one another down and getting to it! (even if I didn’t have this problem, I think I’d have to get in better shape before I could have sex like I really want…but it’d be so much fun trying.)
In my dream, we had just met, and were so sexually attracted, we played “the game”, you know that flirting that you know is going to lead to more…and it was HOT. Then I woke up in pain. Yes, it even hurts to have a sexy dream.
I know my husband loves me, and still finds me very sexually attractive. He makes me feel desirable. But it’s so hard. I want the build-up…the game…romance. But that hurts. Often, when Stuart does little things to show he still thinks I’m hot, like giving me one of those kisses, or “accidentally” brushing my breast, or grabbing my butt in the grocery store…it hurts me. Literally, hurts me. It causes physical pain, and breaks my heart. (but mentally, I need this from him, so it’s worth it, I need to know he doesn’t see me as just a patient, that he sees me as a sex pot, like he used to.)
So even when we want to fool around with the help from the vibrator, it has to be sudden. Jump right to it. No build up…or PAIN.
I hope when the Meniere’s stops controlling my life…notice I say when and not if! I do believe it will get more manageable. Any way, when Mr. Meniere’s lets go of his grip on me, I plan to go to the UNC Pelvic Pain Center. They are supposed to be able to perform miracles. Not that I expect any, but I’m very willing to give it a try.
All I know is…I want SEX!! Really, good wild monkey love kind of sex!!
Today was absolutely beautiful, and I woke up without a headache…(meaning a little bit of a headache, like normal, but no where near like I’ve been having lately…yes, I always have a headache, sometimes it’s just much, much worse than other days.)
The weather was gorgeous, in the low 70′s (F), with a slight breeze. The leaves are starting to fall off the trees. I took my lunch out on the back porch and enjoyed the sun and warmth. There was a gust of wind and a flurry of leaves blew over head, it reminded me of a scene from Winnie the Pooh’s Blustery Day, however, my day was not that blustery. I had a giggle.
We decided since I was having such a good day, we would go somewhere. We went to the little mall near our place, and bought Stuart 2 new ties for him to wear to interviews. They are a bit bold, and show more of his personality. I think they show confidence! I hope the people he interviews with also thinks so. (today was Stuart’s last day of work, just a couple of hours really, turned in his computer and told them where he left off. The owner said he felt so bad, but he had realized if they had one bad month they would be in trouble. They have decided to put the project Stuart was working on, on hold…so no reason for Stuart to be there. Stuart is so great about it. I think it’s the Buddhist in him, I’m not as philosophical…but I’m trying.)
Today, we didn’t think too much about that! We walked the mall, window shopping. Then we needed to go by Wal-Mart to pick up a couple of things, yes, I don’t really like shopping at Wal-Mart either but it’s 1 mile from our house, so convenience sometimes wins. Unfortunately, I really used up most my energy in the mall, and shouldn’t have gone to Wal-Mart. We stayed there much longer than I should have. By the time I got home, things were spinning a bit, especially if I moved my head too fast. I bent down to feel the dog, and the world when Whoosh! I’ve been lying down since then.
I had a great day! Lived it to the fullest. (yes, going to the store is living it up for me.) However, I really need to learn where my cut off point is. I push myself beyond my limit way too often. If I feel good, I take advantage of it. Hopefully, I won’t be paying for it tomorrow.
Right now, my hip hurts, my back hurts, my tail bone hurts, my head is starting to hurt (worse), and I’m very off-balance. Think I over did it? Yeah, me too.
So how do you learn what’s enough? Often I don’t feel that tired, or hurt that much, until I stop. Do you know what your limits are?
With the holidays coming up, I really need to figure this out. Right now, I’m thinking, we won’t be going to any parties. We may try to have a few people over to our house We think it would be better in my controlled environment, I can go lie down if I need to. Or I can get away from noise if I need to.
Thanks for any advice.
Think I’ll be posting more about how to handle the holidays soon.
I thought everyone would appreciate that the only damage we received from Irene, was that our wild flowers are now on the ground. I must say, these flowers have grown completely out of control. I just planted a bunch of mixed wild flower seeds in this area, they were supposed to range in height from 6″ – 24″. We have some that have passed 3 feet high, and are close to 4 feet. I guess I should say, they were…now they are leaning quite a bit, and covering our walk way. I’m so relieved that we have been spared both the tornado, and the hurricane that has come through out area in the past few months. (Did feel the earthquake, but we used to life in California, we just thought it was weird here.)
Now…on to the story of A Pretty Good Day:
Today I woke up and was excited because Stuart mentioned if I felt alright we would go to the grocery store.
Yes…that sounds sad, but getting out of the house…heck, getting out of bed isn’t something I’ve done in a while. As of last night, I’d been out of bed about 4-5 hours total since Aug. 22nd. 8 Days. Wow. (and those hours were spent on the couch.)
Well, I decided to take on much more than the grocery store, I wanted to go to Michael’s – the Arts and Crafts store. I had the desire for new art supplies, and a new sketch pad. Since I’ve been doing so much more art, I needed some new stuff. I got 2 sketch pads, one has 90 lb. stock paper (this means it’s very thick and you can use watercolor on it.) The other is just a sketch pad, about 50 -60 lb. Not sure exactly, I found it in the Bargain Bin at Barnes and Noble. So yes, I went to Michael’s, Barnes and Noble, Target, and Earth Fare. We even ate at Earth Fare’s hot bar (Earth Fare is like a local…well, NC based…Whole Foods.)
I got new pencils that are so cool. They are called Inktense by Derwent. They are like watercolor pencils, but they are ink based. Hard to describe, but you can draw with them just like colored pencils, then if you add water, the color gets vibrant, and very…well…I have to say it Intense. I’ll be posting a drawing I did with them on my other blog Create to Heal. If you are interested.
I feel like I easily walked a couple of miles today. I over did it. When we were walking around Target I know people thought I was drunk. I kept losing my balance, and my words were not coming out right. Stuart kept asking if I was alright, and I said I was….and I felt that since I understood I wasn’t quite right, then I was alright enough. I explained this to him, and he seemed to take it in stride. (remember, when he had his “episode” he thought he was fine, and he was…oh, so NOT.)
So great news today. Minor nagging headache, haven’t needed to take any Diamox (the drug that lowers your pressure, and has icky side effects). Off balance/disequilibrium a lot, but no spinning. My hip/back/and knees all hurt….oh and so do my feet. I’m sure the hip is going to yell at me tonight when I’m trying to sleep. I’m going to get in a hot bath very soon.
Yesterday I published a series of photographs that I manipulated to show the intensity of my headaches. I think some of you might like this: Translating My Headaches Into Images.
I’m sorry to see the summer coming to an end. At the beginning of this summer, I had such hope, so many plans….and no frigging idea I’d have to have 2 CSF procedures!! Well, look out Fall, because I’ve got a lot of making up to do!