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Fun For Healing UPDATED

Longtime readers know that I occasionally post about things like art, music, and fun to break up the monotony of talk about chronic conditions. It’s important to connect with fellow patients. They can be an incredible source of inspiration, information, ideas, and resources. It is also important to occasionally think about things that have nothing to do with illness and pain… or at least provide a brief break or distraction from them.

Plane

A few weeks back when I was having a “good day”, as we who are chronically ill tend to call them, I was fortunate to go for a spin up in the clouds. My husband’s friend has a small plane (big enough to seat four) and we went flying! How cool is that?

PlaneInside

Now, for the record I was a backseat driver this time. However, I have flown this friend’s plane before. It was one of those moments I’ll never forget because I didn’t know it was going to happen! I was sitting next to the pilot and all of a sudden he said, “OK, your turn”. My brain was thinking, “huh?”… He then told me what I needed to do and I just did it. (He was right there next to me, ready to take over at any time if needed… of course). In any event, it was far easier than I thought. (Don’t get me wrong. I wouldn’t want to take off or land the plane. However, flying it was much easier than I thought).

Anyway, as I said, this flying fun took place a few weeks back. My husband and I had our 11th wedding anniversary that weekend and he’s obsessed with anything related to aviation. So this was a special treat.

Anyway, fast forward to this past weekend. I needed a break from the heat! More details to come about that but first some background.

Those of you who communicate with me via other means besides this blog are most likely aware that I have been feeling particularly ill for the last couple of weeks now. It has been challenging to do the simple things involved in getting through the day. Walking from room to room was a challenge at times.

So I was as surprised as anyone when I came up with the idea to go have dinner at a cute little restaurant we like by the lake.

I’ll take a quick break from from “healing post of fun” to explain what it is I was healing from this past weekend when we headed for the water. (I picked water as my theme for this blog because I associate water with healing).

Here’s a picture of a windsurfer we saw on the lake this weekend…

Windsurfer

Symptoms of a number of my chronic conditions have been flaring up simultaneously. My fibromyalgia has been flaring for weeks, I’m just coming out of a brief but fairly intense interstitial cystitis flare-up, my neuropathy has really been bothering me and I am bracing for my next period (which isn’t always entirely predictable and likes to hit me at the worst possible times). Thank you very much, endometriosis.

In addition to the pain and other symptoms associated with the above conditions, I have been feeling very faint every day, feeling lightheaded and dizzy, and feeling nauseous. I have had off-the-charts fatigue. This is above and beyond my “normal” level of fatigue. I have been taking naps for hours at a time during the day. I haven’t been able to tie this last bunch of symptoms to a multiple chemical sensitivity exposure. (MCS has been known to make me faint). Nor have I been able to tie them to medication side effects. All I know is this has been a significant problem for a good couple of weeks now.

Windsurfer2

All of these things were well in place when the heat hit. The heat. My body does NOT like heat. Rather than re-invent the wheel trying to explain heat intolerance for those unfamiliar with it, I will refer readers here to Endochick’s recent blog post on this very subject Heat Intolerance & The Midwest Summer. As Endochick mentioned, the heat can cause powerful symptoms for those with heat intolerance. (Please be sure to read the comment I posted on her blog post too). Let’s just say that if I felt the way I did before the intense heat hit my area, it was about to get much worse.

So, I have to say that I made the right choice this past weekend. The amount of car time involved to get to the lake is such that I knew there was some risk of stirring up my interstitial cystitis. On the other hand, we don’t have air conditioning at home. So being in the air conditioned car was a huge plus. I also knew that once we got there we’d have a yummy meal and pretty view of the lake. Plus we read Harry Potter by the lake. How much better does it get than that? My hunch was right and I felt much better after our trip to the lake than I did before.

They say laughter is the best medicine. I think “they” have a point. Having fun flying made me feel better a few weeks ago. Having fun this past weekend made me feel better than I had in a couple of weeks. So… if you’re feeling lousy, in pain, having symptoms and the circumstances are right (trust me I know that there are times leaving the house is impossible), give your kind of fun a try when you can. What’s fun for me may not be fun for you. For example, if you don’t like airplanes then going flying isn’t your thing. The point is try to find the time and the means to do what’s fun or healing for you. We’re all busy and this is sometimes easier said than done. I realize this. However, you only live once. So once in awhile, try slowing down and having some fun. You might just find it healing!

SelfCareTurtle1

Finally, I just have to post these pictures. Believe it or not these were taken with my husband’s cellphone camera right by the roadside in front of our house! (My husband spotted this turtle as we were approaching our driveway). Look at how HUGE this turtle is! I’m including these two pictures to symbolize the importance to our health of knowing when to slow down…

SelfCareTurtle2

Last but not least, if you liked this article, please retweet it to share it with others. Cassie recently added an adorable “Tweet This” bird at the end of each post before the comments section. She had already included a hyperlink for tweeting posts here but now it’s easier to spot. So don’t be shy. Try it out.

P.S. I plan to post the next blog giveaway soon… Hopefully this week (depending on how I’m feeling). So stay tuned for more blog giveaways. We’re not done yet!

Wikipedia_Parasailing_image

What? You’re still here? Don’t you know the post is done? Oh! Wait a minute. That’s right. I updated it. Yes, that’s why you’re reading this. Silly me. The above picture of a parasailer will make more sense to you when you read the blog comments to this post. Specifically, the comments exchanged between Alicia and me. I don’t know who the parasailer pictured here is but decided to add a parasailing picture for reasons which will make more sense after you read the blog comments. This picture actually doesn’t do justice to what I was trying to show but it at least gives you an idea about parasailing if you’ve never seen it.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Fun For Healing UPDATED

34 comments

1 EndochickNo Gravatar { 06.30.09 at 12:27 am }

Happy Anniversary, guys!!! 11 years is something to be proud of! Congratulations!

My late uncle used to take us up in his Cesna and then relinquish controls in-flight. He did this on my first time flying with him (I was in the back seat), and this was my first time ever in flying! He tells my dad, “Bobby, I don’t think I can see very well, you’ll have to take the controls.” I had no idea my dad could fly an airplane! My uncle had taught him and everything. I was freakin’ out! But my dad took control of the plane and landed it with me praying the whole time for my life. They both couldn’t stop laughing when we got out and then they let me in on the secret that dad had been flying since he was about my age (12)!
.-= Endochick´s last blog ..Heat Intolerance & The Midwest Summer =-.

2 JeanneNo Gravatar { 06.30.09 at 12:38 am }

Endochick,

Thank you. This (flying) was a few weeks back but it has taken me this long to post pictures. Between the blog transfer and my health issues, I’ve been getting backlogged on just about everything. Thanks!

That is too funny that your dad and uncle tricked you into thinking your dad didn’t know how to fly when really he’d been flying since age 12. I can just see them laughing over that one. You must have been dying. How old were you when this occurred? That’s a good one. That’s one of those stories you’ll always remember, you know?? 🙂

Jeanne

3 Kelly DNo Gravatar { 06.30.09 at 1:24 am }

We just celebrated 10 years. Congrats on your 11th!
Glad to hear you got out and had some fun. Laugh a little more often!
.-= Kelly D´s last blog ..Male Infertility =-.

4 JeanneNo Gravatar { 06.30.09 at 1:29 am }

Kelly,

Yes, laughter really is the best medicine! Plus, it’s free and there are no side effects. 🙂

Jeanne

5 AmandaNo Gravatar { 06.30.09 at 2:04 am }

I’m so sorry you’ve been feeling so rotten recently, especially with the heat! The last time I remember Britain getting this hot was when I graduated and I was lucky enough to have no commitments and could do nothing all day – now I’m in the tourist office dealing with seriously grumpy people who hate the heat too!! Your visit to the lake sounds absolutely wonderful and perfect… we had the same cooling relaxation when we went on a punt tour of the river the other day – what a treat!

Wow look at you flying!! I hate flying personally – it does something screwy with my ears/sinuses and I spend the entire time dizzy and sick (funnily enough it didn’t bother me the first time I flew as a child, only really since I had a bad flight so I think some is panic-related and as I had labarynthitis last year and get dizzy randomly anyway I am not looking forward to our flight to Rome this summer!) However I can see the huge potential for fun if you do enjoy flying and think it is the perfect escape!

This is an excellent post, Jeanne, thank you! I recently hit rock bottom with the way I felt emotionally and had to see the doctor and between us we decided I needed to get out and do more rather than sitting at home trying to conserve my energy just so I could get to work. It’s amazing how much prioritising my time and saying my health and wellbeing come way above my work makes such a huge difference. By saying “yes” to a few treats like a trip to Glastonbury (my personal healing sanctuary) and one to Lincoln to see my old school friends I have effectively pulled myself out of the dangerous stress/depression zone I was in – and haven’t even done these treats yet, just the thought of them helps!

Anyway I better dash or I’ll be late to work – take extra good care of yourself during this heat wave and be extra specially kind to yourself too – treat yourself lots when you can!
.-= Amanda´s last blog ..When you lose who you are =-.

6 JeanneNo Gravatar { 06.30.09 at 2:57 am }

Amanda,

The heat can make things pretty brutal. That’s for sure. Yes, the lake was just what we needed to “de-grump” and to get some relief from the oppressive heat. It was wonderful to just sit and watch the boats. I’m glad you got some “river relief” yourself recently!

I know there are lots of people who don’t like flying but I love it. Sorry it makes you dizzy. I do remember you mentioning your labyrinthitis in one of your posts. Best of luck on your flight to Rome this summer! Yes, I just love flying. To look out the window and see fluffy, puffy clouds and pretty water… It’s just awesome. Not to mention the floating feeling. I love it.

I’m glad you like the post. I’m really sorry you hit rock bottom. 🙁 I’m glad you and your doctor are working as a team to find the right balance of activity for you. Finding that can be tricky but it’s so worth the effort. Yes, a job is just a job. Putting your health and well-being as top priorities really does make a difference. I’m glad you had some treats! I’ve never been to Britain but Glastonbury sure does sound like where Tori Amos has done live, outdoor concerts. I’m almost sure I’ve seen YouTube footage of this from years ago. (I’m not sure if I have ever told you but I am a rabid fan of Tori Amos. Just see my music page to look at the picture of when I met her in person). Anyway, I’m also glad you are also going to Lincoln and will visit your old school friends. That’s excellent! Yes, having something to look forward to makes all the difference in the world, doesn’t it?

It seems so strange with the time difference that you’re dashing out the door to work and it’s the middle of the night in insomnia-ville here. You take care of yourself with the heat too! Yes, give yourself plenty of treats. You work hard at that job and you need to squeeze in treats when you can. 🙂

FEEL BETTER!

Jeanne
xoxo

7 YayaNo Gravatar { 06.30.09 at 6:04 am }

Love the turtle pics!

I love that lake, as you know! 😉

You didn’t tell me you went flying?? Holy cow! Did you tell me? I’m pretty sure you didn’t! What other crazy things have you done recently that I don’t know about? Bungee jumping? Sky diving?
.-= Yaya´s last blog ..Sits Commercial =-.

8 ElizabethNo Gravatar { 06.30.09 at 9:35 am }

Happy 11th – that’s great and always great to be able to forget the pain for awhile.
Regarding your sleeping – how long, if ever, since you’ve had your thyroid tested. I’m hypothyroid – amongst all the other things – and get mine checked every six months. I was fine six months ago and then last week my thyroid went way out of whack again. Could be a reason you’re feeling so tired. I recommend getting it tested.

The heat has made my migraines unbearable for the last couple of weeks so know how you feel – my whole family is tired of the increased pain and awaiting the lower level of pain I’m always in to come back.
Best wishes
Elizabeth

9 JeanneNo Gravatar { 06.30.09 at 2:03 pm }

Alicia,

I knew you would like the turtle pictures! It was so cool. That turtle was HUGE!

Yes, it was too funny when I found out afterward that you were there the same day at the lake!

Yes. Did I forget to mention that? Well, things have been busy. I actually planned to post on it right away and then it was blog launch time and then I was feeling really sick… So I finally used those airplane pictures. I took a lot more pictures that day. We saw some cool wind turbines from the air. I’ll have to post them at some point. In any event, on to your next questions… No, I have not been bungee jumping or sky diving. Years ago, I wanted very much to go sky diving. I even worked on recruiting a friend to go with me. (The response was basically, “no way!”) So I have never done those things. (Never really had a desire for the bungee jumping).

I will tell you something super-cool that I did when I was much healthier, though! It’s one of the most awesome things I’ve ever done. I went parasailing! I was on vacation in Florida. I was working 80+ hours a week at the time and this much-needed vacation helped me keep my sanity! (This was my vacation from the unbelievably problem-filled job I hated when I lived in Detroit). I was staying in St. Petersburg, FL and they had a company on the beach that did parasailing. It was a gorgeous day. It looked really fun. It was reasonable priced. So I did it. I went parasailing. AWESOME!!!!!!!!!!!! 🙂

I was blown away by how high I got in the air!! You basically sit in a harness and they attach all the stuff between you and the boat. The boat leaves the shore and the parasail lifts you up over the water. REALLY, REALLY high!!! My huge hotel looked like a little Lego. It was so beautiful up there! I will never, ever forget that day. It was so amazing. It was SO high up in the air. I am not afraid of heights at all but I got those little butterflies in my stomach like you get on the highest roller coasters out there? In a good way. It was just awesome!

I’m so, so glad I did that then because I would never be able to do that now. (Sitting in that harness would be impossible now thanks to vulvodynia/vestibulitis). Back then, though, it was just an awesome experience. The view was spectacular. I really felt like I was flying. The harness straps were narrow enough that I could kind of ignore them and not look up at the parasail and just feel like I was somehow flying on my own. It was very, very awesome!

I will never forget going back to the hotel and calling my parents to say hi. My sister had answered the phone. When I told her what I’d just done, she said, “WHAT?” and then my mom picked up. Let’s just say she was less than thrilled. (I should mention I took this trip by myself… which, by the way, is a great way to take a trip)! She said, “What were you thinking? What if you had gotten hurt? Who would have even taken you to the hospital? etc. All I knew was I had FUN and nothing was going to spoil it (not even my poor mother worrying about me).

I’m glad I did some of this fun stuff before I got too sick to do it. I’ll bet you never knew I went parasailing, huh? 🙂

Jeanne

10 JeanneNo Gravatar { 06.30.09 at 2:22 pm }

Elizabeth,

Thank you. Yes, I work hard at distracting myself from pain. Granted, it’s sometimes with limited success. However, at other times distraction works amazingly well for me… even for severe pain. If I can immerse myself in something and just become totally engrossed in it, sometimes it helps. I actually use blogging as a distraction technique many times. Some of my most productive blogging in the past year was when I was in severe pain.

I appreciate your suggestion regarding thyroid testing. Actually, my doctors test the heck out of my thyroid. The endocrinologist tests it because of my nodules (determined to be benign by fine needle biopsy after multiple ultrasounds). My primary care doctor tests my thyroid all the time for various reasons. Plus one of my other specialists tests it regularly because of a medication I’m on. So, I actually have 3 different doctors testing my thyroid often. I appreciate the idea, though!

I know my usual reasons for being tired include my fibromyalgia, sleep apnea, and endometriosis. I also have problems with insomnia and sleep patterns that are not good. There have been times when medications give me drowsy side effects and lethargy. However, the fatigue lately has been so profound as to be somehow different. I’m not quite sure what’s going on. I’ve been in a fibromyalgia flare-up for weeks. I honestly don’t know if this is just a really bad fibro flare or what? All I know is I’ve been feeling faint, dizzy, and nauseous and it started before the heat really kicked in. The heat has just magnified the problems.

I’m really sorry to hear about your migraines being unbearable. Yes, chronic illness truly does affect our loved ones too. I hope you feel much better soon! I’m sending positive energy your way!!

Best wishes to you too!

Jeanne

11 Melissa RalstonNo Gravatar { 06.30.09 at 5:22 pm }

Fun… a word not often associated with us “sick” people. It’s too easy for us to focus on our illnesses and the misery that they create, that we do often forget that we are not our illnesses, but that we are an individual living with illness.

The last few weeks as you know Jeanne, have been particularly brutal for me, especially as the heat is starting to set in. My fibro has been in full force, the fainting spells are a regular occurrence, and let’s not even get started on the latest round of bowel issues! “Fun” is something that has been lacking in copious amounts in my life lately. But I’m regaining my childhood once again. I’ve been chasing after the ice cream truck when he comes speeding through our parking lot of the apartment building. Sometimes I’m even lucky enough to catch him to score my chocolate dip-cone. Other days, I’m thinking it’s a good idea that I missed him since I’m sure that the chocolate dip-cone addiction isn’t necessarily going to make it any easier to lose the baby weight when the time comes! Jacob and I have been sitting out of the patio when there is a breeze and blowing bubbles. It’s cute to watch him run after them and pop them. I try to picture each bubble as being any of the nastier complications I’ve had in my health lately and the act of them popping as them disappearing. Sometimes I like to picture my doctor as the bubble in retaliation for the numerous IV sticks as of late. My arms are starting to take on the appearance of a drug addict with the number of pokes. I’ve also become a pretty adept player of online pinball. Again, the visualization of hitting away all of the health complications is somewhat cathartic.

Anyway, just wanted to say thanks for the post my dear. I hope that your “fun” was healing for you and that you are well on your way to feeling more like “you” again rather than everything else that has been going on.

Hugs,
Melissa
.-= Melissa Ralston´s last blog ..The Fertility Journey: More Complications =-.

12 JasmineNo Gravatar { 06.30.09 at 8:32 pm }

Great pics! I’m always thrilled to hear about those good days. Hoping for more of them for all 🙂
.-= Jasmine´s last blog ..Understanding Invisible Illnesses =-.

13 JeanneNo Gravatar { 06.30.09 at 10:39 pm }

Melissa,

Yes, I know. When I typed the word “fun”, it felt a bit odd to me. I’m so accustomed to writing about such serious topics. The word fun doesn’t usually get headline status for what I write. However, I recognize that for healing fun can be a very important ingredient. Yes, it is too easy for us to focus on our illnesses and the negative consequences ranging from annoyance to agony. After all, it’s not fun being ill. You are also right that it’s too easy to lose sight of where the illness ends and where the person begins. It can be easy to have chronic illness hijack our identities. We are individuals who happen to be living with one or more chronic illnesses. The illnesses are part of who we are but they are not who we are.

Melissa, I know you have been going through an incredibly challenging, grueling, and even frightening time lately. I am so sorry. Your courage and determination is inspiring to me and many others. When life hands you lemons, you make the biggest lemonade stand ever. I marvel at how you do what you do. Even the word you used, “brutal”, isn’t enough to summarize what you have been dealing with. There are no words. To have an unanesthetized bowel surgery and colonoscopy during a high-risk pregnancy after having had nine miscarriages, to be in the kind of debilitating pain you are in, to have had the stress of dealing with a completely unreasonable employer, to be fainting left and right, to be getting twice weekly IV treatments, and to be spending more time in the ER than anyone should ever have to spend… I am just amazed at how you have been handling these and so many other issues. (Who can forget the ceiling caving in?)

I am so sorry you have been through so much. I am so glad that you are finding joy in the little things… the ice cream trucks, sitting on the breezy patio, and blowing bubbles. I just love the visualization you described where you picture each bubble that pops representing the nasty complications you’ve had. I’m so sorry for all of the trouble you’ve had with your veins. I know you have been fighting off boredom and are used to being much more active. I know it’s hard. If online pinball helps beat the boredom, go for it. I just love the idea of using visualization as you’ve described.

Anyway, you certainly don’t have anything to thank me for. I would like to thank you for your comment. I can only imagine how much of your limited energy it took to leave such a detailed comment. I hope not too much. Talking with you nearly daily has been a huge blessing. I think about you all the time. I hope you can get some decent sleep.

Anyway, my “fun” really was healing for me. I still feel bad today but not as bad. I still had very bad headrush everytime I stood up but I didn’t feel quite so faint. (Granted, it’s cooler today than it has been). I really do think that trip to the lake was helpful though. I do. I know I need to brace myself because my body informed me today that my period is imminent. So, I’d better “live it up” quickly (haha) because the storm is about to settle in. Hopefully the ride won’t be too bumpy this month. One can only hope!

Hugs back to you!

Take care,

Jeanne

14 JeanneNo Gravatar { 06.30.09 at 11:10 pm }

Jasmine,

Thanks! Yes, it’s always helpful to me to hear about the good days other patients have because it gives me hope. I like to share my good days with others because I like to think it gives them hope. I have been sick enough, long enough to have come to the conclusion that I need to grab the good days when I can get them and I need to try everything in my power to turn around the bad days (even slightly) if at all possible.

The plane day was a good day. The lake day was not a good day until I tried something to turn it around. There was some risk of feeling worse rather than better by going. I took that risk. After weighing the potential benefits and risks, I decided that I should go to the lake.

In this case, I lucked out and it was helpful. Sometimes when I try things like this, it backfires.

All I know is I have to keep experimenting because if I don’t it’s a form (for me) of “giving up”. I can’t do that. So I will keep experimenting. Sometimes it will pay off. Other times it won’t. For me, all I know is I have to try.

Like you, I am hoping for more good days for all. 🙂

Jeanne

15 ShaunaNo Gravatar { 07.01.09 at 4:09 am }

Dear Jeanne,

Ahhhhh WATER!!!!!!!! I 100% agree as to it’s healing properties, just the sound of it for me begins the process.

Being a native Californian, and a beach girl, I of course gravitate to the ocean. The salt water, the scent and constant spray in the air of water and salt, are extremely healing for me. (Literally, for my skin too!) I miss it, but the sea lives always in my soul. My years growing up there, my mom with me, tan and gorgeous, the bank with a lollipop round, the wood floor of the toy store with all the beautiful horses on the very top shelf….these are days of time on the beach also, and they are memories I cherish. Almost drowned but that’s another time! :-X

We share such a love of water!

11 Years?!?!?!?!?!!!! YOU GO GIRL! I love to hear you happy J. That alone is a blessing.

Still no McK for me…and you–anything??? If no with you also, I am terribly concerned. Deeply.

Jeanne…I am praying for your strength and ability to handle your hot days there, as they sap your energy so much; and the FM to lighten a bit and give you a way to cope with the pain. 🙂 Geez…sometimes it is amazing to think how many there are ‘of us’….pain- pain- pain- people! My muscles that run along the spine are just like ropes right now, and deep, deep spinal pain in the mid-back. That signals to me to get off the computer. I really need a laptop again! So then I didn’t get to post when I wanted to, yada yada…but oh well. Whatcha gonna do?? The pain can kick us off of anything when it gets acute such as mine right now. We have talked long enough to know we can relate to the pain–in the intensity of it when it flares up. I wish for you a way to handle yours- just as you do for me. And then sometimes Jeanne….

It just shuts my brain down and I realize that even getting to any water right now is out of the question. That is the worst part for me at this point in my life. As those in my life hear me say, ” I WANT TO DO THAT!!”, but wanting and carrying it out are two different things! Life is changing drastically, and I love your post because it allowed me to take myself away from here and join you by the water, reading books, good food, and FLY!!!!!!!!!! Wow!!!! That sounds fantastic.

Cool too, that your blog title area has water in it…my phone background looks almost like that 😉 but not such a deep blue.
We can be: “The Water Women”! LOL

Great post Jeanne!!

Gentle Hugs…. <3

16 YayaNo Gravatar { 07.01.09 at 7:08 am }

Cool!!! I actually went parasailing and bungee jumping back in my young days of college when we were on spring break. Of course, the minute I got done parasailing I was informed that someone DIED the day before parasailing because the wind took them into a huge rock. yeah…glad I knew that information AFTER I did it! It was fun, but I don’t think I have the guts to do something like that today!
.-= Yaya´s last blog ..Sits Commercial =-.

17 ShellyNo Gravatar { 07.01.09 at 7:32 am }

Hi! Glad to hear that you had a nice time! You deserve it! xo

18 JeanneNo Gravatar { 07.01.09 at 9:09 am }

Dear Shauna,

I know you love the water!!!!!!!! You have written enough about the beach for me to know how much you treasure it. 🙂

Being near the ocean must be just awesome! I’m glad you have so many happy memories of the beach. I think sometimes the memories we cherish help carry us through difficult times later in life. (Obviously the near drowning you referenced is another story altogether but we won’t go there).

Yes, water is awesome. When I think of water, I think of clean, cool, relaxing, refreshing, and the best thirst quencher there is.

Yes, 11 years married and 13 together. When I think back over everything we’ve been through, all of the hardship and adversity, all of the stress, off all the medical bills… I sometimes wonder how on Earth we have made it! I look around me at all of my friends and support group members who have gotten divorced and I know it could just as easily have been us. So I am grateful that we have found a way to make it work. Trust me when I tell you it hasn’t been a Hallmark commercial. I’m happy that we have gotten through all of the “tornadoes” and “hurricanes” thrown our way! It’s not all peaches and cream but we are working as a team. We learned awhile back that working against each other was a recipe for disaster.

I have not heard from McKayk. I have emailed, posted blog comments, sent tweets, etc. I asked Jessica of Live On Purpose if she has talked with her (because she has always been a regular commentator on Mckayk’s blog) but she hasn’t talked with her either. I too am deeply concerned. Even when she is at her sickest, she normally sends out some kind of message by now. It has been quite awhile and I have seen no message anywhere. She hasn’t posted in a long time. It is troubling. I wish I had her phone number. 🙁

While I still feel faint and have a number of other symptoms going on… and while my fun-filled endometriosis period has just joined the bandwagon (yahoo!), I feel less faint than a few days ago. So, I’m hanging in there. The heat really does suck the life out of me. Fortunately, the temperature has dropped way down (yay!) to 64. Woo hoo!!! So I am happy happy happy about the temperature!!

The fibromyalgia has been brutal for weeks and I’m ready for it to knock it off! We’ll see. I’m trying to just get through it. I’m tired of every molecule of my body hurting! Yes, there are a great number of people experiencing chronic pain. The numbers are staggering.

I am so sorry about the muscles along your spine hurting so much!!! That sounds very painful. I’m sorry it hurts so much. 🙁

Yes, I think when fellow chronic pain patients talk with each other and really “get” what the other person is talking about (regardless of the source of the pain), it really establishes a connection.

I’m hanging in there and I know you are too. We’ve been at this pain management thing for awhile now and you just do the best you can with the resources you have available.

Yes, sometimes the pain does that lovely, “I’m going to shut your brain down now” thing. I know that is terrible. 🙁 I’m sorry.

I know getting to the water may not be attainable all the time. However, if you have an opportunity to go on a “good day” or on a “not good day that might be able to be salvaged”, I say “go for it”!

I know it’s hard. I know it’s frustrating. I know when you want to do something and your body says, “NO”, it’s terrible. Yes, wanting it and carrying it out are two different things.

You made a very good point. No matter how sick we are or how much pain we’re in, we can visualize where we want to be. If we work at it, we can visualize in powerful ways. 🙂

Yes, when it came time to pick a theme for the blog I asked Cassie to help me find some soothing indigo blue, rippling water. Didn’t she do an awesome job?

That’s funny that you have water on your phone too. 🙂

Listen, water woman… you get some rest and see if you can get those back muscles to behave themselves. I want you feeling better! 🙂

Thanks!

Gentle hugs back! <3

Jeanne

19 JeanneNo Gravatar { 07.01.09 at 9:30 am }

Alicia,

Wow! So we both went parasailing?! How cool is that? I was 25 when I went. No regrets. It was awesome beyond belief! (Yes, there is always a chance for accidents with these things and, of course, I feel terrible for the families of anyone involved in such an accident). Wow! You went bungee jumping? Where did you do that? You little daredevil! 🙂

Jeanne

20 JeanneNo Gravatar { 07.01.09 at 9:33 am }

Shelly,

Thank you! It is nice to break up the pain and misery once in awhile with some pure FUN. It helps me cope. Good luck with your move!!

Jeanne
xo

21 Jannie FunsterNo Gravatar { 07.01.09 at 10:03 pm }

I too have been on one of those little planes. It’s thrilling.

Glad you got away for a nice time to the lake.

I do NOT like the heat, feel like a zombie.

And even your blog background is water now. Cool!

xoxo
.-= Jannie Funster´s last blog ..Like a bord on a wire, 9 =-.

22 JeanneNo Gravatar { 07.01.09 at 10:27 pm }

Jannie,

Isn’t it awesome? 🙂

Yes, the lake definitely did me good!

I agree with the heat truly causing a zombie state that is not at all fun. I do NOT like it either.

You like that water?

Jeanne
xoxo

23 JeannetteNo Gravatar { 07.05.09 at 12:03 pm }

I loved, loved, loved that post!!! It was so inspiring to read about how you put your “good day” to such a wonderful use. We can still have great adventures chronic health problems or not. Thanks for reminding me of that!!! Plus-you looked so very cute with that headset on…you look happy & excited. Great to see…

Thanks for posting that!
Jeannette XXOO
.-= Jeannette´s last blog ..WHAT ABOUT US…THOSE WITH LEGITIMATE CHRONIC PAIN??? =-.

24 JeanneNo Gravatar { 07.05.09 at 2:38 pm }

Jeannette,

I’m so glad you loved it! 🙂

Yes, I truly think we need to celebrate the good days as well as talk about the bad ones. I know I feel hopeful when I read about fellow chronically ill patients who are able to grab onto the “good days”. It helps me to stay hopeful. It was a beautiful, sunny day and it was just a fun little adventure. We were probably only up in the air about 30 minutes but that was about perfect. We saw some pretty sights (I’ll have to post the cool wind turbines that we saw someday). We were up long enough to have fun but not so long that I had to worry about any medical issues (bathroom emergencies and the like). It was just right.

Jeanne
xoxo

25 NamrataNo Gravatar { 07.07.09 at 4:32 am }

Hi Jeanne,
I am so impressed on reading your note and also seeing what all yyou have done to reach out to women. I have had endometriosis for 3 years now and have just recently started looking out for women in same boat as me! However, I have had my share of the journey on WHY ME! and wanted to share the same with you………

As a girl my impression of the world was one of inequality. I felt that boys got more freedom & privileges. From there started my journey of low self esteem. I hung aground with boys, intellectually challenging them, choosing electronics over home science, just to prove I was good enough. Outwardly no one could make out this fight that went on deep inside me. Marriage at 30 had given me a beautiful baby girl followed by a bad post natal. It was then, 5 years ago that I encountered Nichiren Daishonin’s Buddhism. Benefits started pouring in my life. A house, stable job & financial abundance but I was still waiting for the sun of absolute happiness to arise in my heart.

3 years passed by. In a spontaneous full health check, the sonography showed cysts on my ovaries, a condition called Endometriosis, something I had never heard of before. I had been experiencing abdominal pain for close to 3 years, but no one ever diagnosed this. Research on this diagnosis shocked me. No doctors, no website could not say what caused it or what was the cure. All my life, I had begrudged being a girl and now my female system was malfunctioned. The workings of the Law of Cause and Effect. The effects for me now were infertility, constant pelvic pain, severe fatigue, low energy & mood swings. Medication also did not help & I went through a very painful removal of one cyst which came back in a few months. I felt unfortunate. My life condition became that of self pity & complaints. Life seemed a bagful of responsibilities and no energy. I got introduced to homeopathy medication and found some relief with the pain.

I came across Dr Daisaku Ikeda’s guidance ” For all you know, you may have been saved from a much bigger tragedy.” Unquote. In an instant I recalled the words “NOT MALIGNANT” from the report when my endometriosis was diagnosed. Instead of begrudging I decided to do something about this! I knew that it was the manifestation of my own karma that I was in this condition. I chanted with deep gratitude and overcoming my laziness I started doing 1 hour chanting every morning before leaving the house. I started chanting to discover my profound mission that lay behind my suffering

My mood swings were still getting the better of me. On days I was this perfect angel and then some days I turned into a devil. Saying and thinking the most despicable things imaginable. I was hurting and alienating the people who genuinely cared for me. I would immediately regret but it used to be too late. I just could not control what I said. This increased my frustration & desperation. Buddhism teaches “Thoughts, words and actions create karma”. And I was creating only negative karma. I researched a bit on what caused mood swings. Hormonal imbalance? Imbalance! But hadn’t that been my predominant life state from when I could remember. Feelings of inequality, disharmony with self and environment was what I had always experienced with all my actions revolving around it.

Isn’t equality and balance the law of nature itself? Co –existence is the dharma of the universe. My fundamental darkness’s were causing everything. Buddhism talks about “changing poison to medicine”. I now see mood swings as moments of immense passion and pledge that I will channelize this into positive for creating immense value. Irrespective of being men or women, we all have the same Buddha potential in us to tap. In the guise of my mood swings I only given hurt by saying horrible things, so loving myself now seems inconceivable. How do I undo all that I have done? Nichiren Daishonin says & I quote “It is the heart that is important” unquote. I determine to make my heart so beautiful to only feel compassion, caring and respect for others.

I determine to reach out to all women in the world who feel suppressed to discover the balance and equality that exists inside of them and also in the universe. I determine to start an Endometriosis Support Group

26 My Life Works Today! » Blog Archive » Still flying the friendly skies, just with different flight plans { 07.07.09 at 6:51 am }

[…] authors the blog Chronic Healing and offers a post entitle “Fun For Healing” who doesn’t board the plane for any particular destination, but to simply encourage […]

27 JeanneNo Gravatar { 07.07.09 at 8:01 pm }

Hi Namrata,

Thank you. I’m glad you found my blog. Yes, getting connected with fellow endometriosis patients is extremely helpful! I think everyone who is chronically ill has at least some degree of “why me” at some point in time. I think this is quite normal. In my mind, the trick is not letting that mentality take over and become frequent.

I am sorry that you grew up in an environment where boys seemed to get more freedom and privileges. It makes sense that this would not be helpful to self-esteem. I’m sorry. I firmly believe such inequality is wrong. It sounds like you buried your feelings since you mentioned that “no one could make out this fight that went on” deep inside you. That must have been emotionally painful. I’m sorry.

Having a difficult post natal period must have been very painful too. I’m sorry for your pain. I’m glad that things started to get better for you. You then mentioned 3 years elapsed.

Regarding a sonography being used to diagnose endometriosis, it can’t. It is true that some large ovarian cysts can show up on an ultrasound but the only definitive way to diagnose endometriosis is with a surgical procedure called a laparoscopy. I don’t know if the cysts on your ovaries were confirmed to be endometriomas via a laparoscopy or not? You mentioned having had removal of a cyst. I’m not clear on if that was removed laparoscopically or not. In any event, it sounds like you were given an endometriosis diagnosis on the basis of an ultrasound alone but laparoscopy is the definitive method for diagnosing endo.

The average endometriosis patient goes 9.9 years before being properly diagnosed. For me, it was 10 years from when my symptoms began to when I was diagnosed by a laparoscopy in 1992. It is understandable that you were taken aback that there is no cure or even a proven cause for endometriosis. (So far there are only theories on the possible causes).

Infertility, constant pelvic pain, severe fatigue, low energy & mood swings would be enough to overwhelm anyone. Sadly, medication isn’t always particularly helpful for treating endometriosis symptoms. Again, the self-pity and complaining are a common response to such circumstances, I think. After all, you were still getting adjusted to your diagnosis and figuring out which coping skills work best for you.

Like you, I have found homeopathy helpful. That’s great that you found something to give you some relief.

Regarding where you said, “I knew that it was the manifestation of my own karma that I was in this condition”… I am not sure if I’m interpreting what you’re saying properly but it sounds like you are blaming yourself for your condition. Maybe I’m misunderstanding what you’re saying but if that is what you meant, I must respectfully disagree with the notion that your condition is your fault. Perhaps by condition you meant your emotional condition in how you were handling having endometriosis? I’m not sure.

I’m all for gratitude and have written about it on my blog quite a bit.

I feel it is important to note that there are medical conditions (above and beyond the hormonal imbalances that may be linked to endometriosis) that can cause extreme mood swings such as you’ve described.

While the desire to help others is wonderful, please be gentle with yourself and understand that there may be times when your pain or other symptoms cause you to behave in ways which are hard for you to understand.

It sounds like you have worked hard to achieve the balance you desire. I respect your determination. Try not to be too hard on yourself in a difficult situation. I’m all for being positive and avoiding pity parties. At the same time, you have a chronic illness and there will be times when you feel overwhelmed and frustrated. These feelings are normal.

Jeanne

28 Melissa RalstonNo Gravatar { 07.07.09 at 8:16 pm }

I just wanted to follow-up on Namrata’s comment above.

It’s possible for even the most “Buddhist” of us people to have disease, irrespective of our practice. The Dalai Lama is the perfect example of this. A peaceful man yet someone who has suffered for years with digestive tract issues. I don’t think someone would argue that it was his karma that created this situation.

There is no doubt that a mind-body connection exists. Working in the social work field, I often see the “emotionally fragile” of the children I work with having some illness issues as well. It is a known and researched based fact that cortisol (the hormone released during stress) can amplify pain. Stress has also been highly linked to the digestive tract in the form of development of ulcers. However, with endo, it’s a hormonal imbalance, it’s an immune system response, it’s so much of a bunch of different things thrown together that create our problems. I can say that at 12 years old, I wasn’t stressed out, I was a child living a normal life who with their first period suddenly was stricken with severe health problems. The development of endo, for me at least, I think was in regards to other physical causes, such as estrogen overload and a generally weak immune system. I can say that my emotional state certainly does play a role in the amplification of the symptoms, but at the same time, it’s not the cause for my many health conditions.

I don’t feel that I did anything in particular to bring on my multiple illnesses. Yes they could be worse, but it’s also not fair to anyone to have to feel like they can’t vent their true feelings because “you could have had something far worse”. I have cancer. At the time of diagnosis of course I went through the natural “why me” phase. Fortunately I didn’t have time to think about it since my baby was three months old at the time. I can remember though the many thoughts that came through my brain racing at a zillion miles a minute. Yes, things could have been worse. But this still was bad. I believe that in some Buddhist teachings they come out and state that if you don’t “feel the bad” than it’s impossible to feel the flip side “of the good”. At least to it’s full extent. As for Karma, I’ve been helping women with endo through my 1,000+ member support group for 7 years now. I have a gazillion thank you notes for helping them. I try to respond to each one of their posts with positivity and helping to think about a direction to take. I have tweeted on twitter endlessly to bring awareness to chronic illness. I have dedicated my professional life to helping others with their lives. In short, I have done what the Buddhism suggests in giving your life to service of others. Even in my limited spare time, I’m still reading things that I hope to use to help people (currently Daniel Goleman’s Emotional Intelligence). And yet, even though technically karma should have come my way, I am struggling through nothing short of a BRUTAL pregnancy where I am for all intents and purposes going to be delivering early, we’re hoping to make it another 10 weeks which will be 36 weeks.

I often feel overwhelmed and frustrated, especially lately, but I also know that there is happiness to be found within. True happiness can only come from deep within us all.

Take care,
Melissa
.-= Melissa Ralston´s last blog ..Endo and CMP =-.

29 JeanneNo Gravatar { 07.07.09 at 10:18 pm }

Melissa,

I like your last paragraph in particular. I think it really is normal to get overwhelmed at times amidst chronic illness. Thank you for your input. I know you have studied Buddhism yourself.

Jeanne

30 Melissa RalstonNo Gravatar { 07.08.09 at 7:22 am }

Jeanne,

You are right, it is normal to be overwhelmed at times. But the key is we all must remember that we are not our illness, but our illness is only a part of making us who we are.

Take care,
Melissa
.-= Melissa Ralston´s last blog ..Endo and CMP =-.

31 JeanneNo Gravatar { 07.08.09 at 11:07 am }

Melissa,

Ditto to everything you said!

Jeanne

32 Dysautonomia? Part 1 — ChronicHealing.com { 08.04.09 at 11:28 pm }

[…] sudden. I blogged about how I was feeling near the beginning of these symptoms starting up here: Fun For Healing UPDATED. I also referenced it here: Paging Dr. […]

33 Still flying the friendly skies, just with different flight plans | My Life Works Today! { 10.28.09 at 3:39 pm }

[…] authors the blog Chronic Healing and offers a post entitle “Fun For Healing” who doesn’t board the plane for any particular destination, but to simply encourage […]

34 JeanneNo Gravatar { 10.28.09 at 4:28 pm }

Thanks for the link-back Maria! I just left you a blog comment.

Jeanne

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