Helping women with chronic illnesses

Category — Fibromyalgia

Fibromyalgia: Remarkably Predictable!

Sometimes I feel as if I sound like a broken record. I’ll try to explain what I mean in this post. After weeks of trying to summon the energy (and find the time) to write something here, I find myself picking a familiar topic: fibromyalgia. Currently, I’m experiencing a flare-up of it. As any fibromyalgia patient can attest, this is not a pleasant state.

For longtime readers of my blog, it will come as no surprise that the change from summer to fall weather has triggered a flare-up for me. (I’ve written about this before in posts such as this and this).

The human brain is a curious thing. Sometimes we block things that are painful from our memories. For example, even though I have had a fibromyalgia flare-up every single fall for many consecutive years now, I must have somehow blocked last year’s fall flare-up out of my mind. This past summer, we were not able to do our typical 5-7 day summer trip due to scheduling challenges. We did manage to get away for 2 nights and 3 days. I’ve written before about some of the challenges I have had traveling due to chronic illnesses and pain. I did not do anything very strenuous during the trip and I took great care not to overdo things to the best of my ability. Nevertheless, the trip took a lot out of me.

Our summer trip occurred approximately a month later this year than in past summers. I was baffled when I just couldn’t seem to shake the greatly increased fatigue and pain that occurred following the trip. (I kept thinking to myself, “why is it taking so long to get back to where I was before the trip?”). Here’s where my “amnesia” comes in. Thanks to the trip occurring later this summer, my trip recovery ran right into the weather change from summer to fall. Therefore, I hadn’t recovered from the trip when the annual fibromyalgia flare-up kicked in.

Once I finally realized I was having a fibromyalgia flare-up, I couldn’t believe I hadn’t figured it out sooner. The thing is that the pain and fatigue I have after traveling feel very much like a fibromyalgia flare-up. The fibromyalgia flare-up timing (in retrospect) was actually very predictable. Apparently some part of my brain just didn’t want to remember or accept it.

In addition to the fibromyalgia flare-up, I have been experiencing more migraines again. I had been getting them much less frequently thanks to acupuncture. Unfortunately, they’ve been getting more frequent again (though not as bad as when they were at their most frequent/severe). Some were triggered by exposure to fragrances, some were tied to my cycle, and there were some for which I could find no explanation. In any event, my acupuncturist (who had moved on to tackling other issues) has been working on my migraines again and it is helping. (Migraines cause my blood pressure to spike significantly and I’ve had to tweak my blood pressure medication quite a bit lately).

In summary, I sometimes wonder if I sound like a broken record when I write a post like this. I know I’ve written similar posts about fibromyalgia and migraines in the past. My intention is not to bore anyone to tears! Sometimes it just helps to write about what I’m experiencing. Hopefully, by doing so I can help others who have similar situations to at least know they are not alone.

Thank you to my readers for your patience these last few months. I know that I’ve drastically reduced the number of posts I write and that there have been some people who have chosen to unsubscribe from my blog. That’s OK. I am doing my best and people need to do what works for them. I can absolutely understand why some people have elected to unsubscribe from my blog. At the same time, I just want those who have stuck with me for the ride to know that I do appreciate you tolerating my long absences from the online world. Between my personal life and my illnesses, I just haven’t been able to write at anywhere near the pace I had written at before. I hope that everyone is doing as well as possible and I miss talking with you on and off the blog.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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October 9, 2013   2 Comments

Getting Back On Track!

The five year anniversary of me starting a blog will be in about three weeks. In all of that time, the longest I’ve gone without writing has been recently. It definitely hasn’t been easy for me to step away from it but there have been various reasons that I couldn’t maintain the pace I had set before. I am hopeful that I’ll get things back on track as soon as possible.

It really bothered me that I was unable to be active online this year for Endometriosis Awareness Month. Little did I know when I posted that short video on March 1st that it would be my only March post! Sometimes we just can’t predict what life will throw at us, though. So – as I’ve said before – I try to speak out for endometriosis awareness, as best I can, throughout the year.

Aside from managing my own illnesses, I have been spending time helping a relative who was recently hospitalized, I’ve been helping other family members with various issues, I did some volunteer work that I was “recruited” for, and I was summoned for jury duty.

I have written many times about the importance of pacing and the frustration I feel when I am unable to write regularly on this blog . While I have missed the time I’ve recently had away from this blog, I know that I needed that time to focus on other activities.

In recent weeks, I have been dealing with the same type of fibromyalgia flare-up I get every year when winter turns to spring. While my migraines have been less frequent and less severe since I’ve been getting acupuncture for them, I’ve still had some.

In regard to jury duty, it was an interesting experience. I have been summoned for jury duty many times over the years (far more than most people I know). The last time I was called, I was extremely sick and it was out of the question for me to go in. My doctor had written a letter that excused me from jury duty.

This time when I was summoned, I really stopped to ponder whether I thought I could do it or not. Without a doubt I am still in poor health. My fibromyalgia has been flaring and it really hurts to sit still in one spot for any length of time. That one illness alone would make jury duty a challenge. At the same time, I am not in the very dire shape I was in when I was last summoned. So, I discussed the summons with my primary care physician. She was fully prepared to write me another letter (and she’s not one to take writing such letters lightly); she knows how sick I am and how difficult it would be for me to sit still for so long without moving/stretching and to have infrequent access to a rest room (considering that my interstitial cystitis can cause severe bladder pain and make for unpredictable timing as far as the need for a rest room).

However, I look at jury duty as an important civic duty – like voting. I wanted to give it a shot if I thought I might be able to do it. So, she advised me to take advantage of the time to talk with the attorneys privately about my concerns (rest room access and avoiding exposure to fragrances were the two things I was most worried about). I had been through the voir dire process once before and was already planning on talking with the attorneys privately before my doctor suggested it. So, I screwed up my courage and took a pass on the note from my doctor.

My jury summons number was low. So I knew from past experience I would be called in on the first day. Sure enough, when I called the automated message it said to report the next morning. To make a very long story short, I ended up being one of the people called to sit in “the box” to be questioned by the attorneys. The judge had given some basic details about the case. It was a medical malpractice case that was expected to last two weeks! At this point, I will be perfectly honest and say that I started to wonder if I’d made a mistake passing up that note. However, I patiently waited for the opportunity to speak with the attorneys privately. This came at the very end of the first day. (I will say that I wasn’t sure how I would make it to the lunch break that first day; my bladder was not happy)!

© Jenny Rollo

The private discussion with the attorneys enabled me to share my concerns. In addition to explaining my concerns regarding rest room access (mainly because of IC) and worries about fragrances (and their potential to trigger migraines or even make me faint due to MCS), I had to fill them in on the 2008 surgery I had – which did not go as intended and which has resulted in permanent damage to my left leg (long story). After listening all day to questions pertaining to the medical malpractice case (where a man is now disabled following knee surgery that did not go as planned), I knew that I needed to disclose my own history with having had surgery that has resulted in lifelong damage to the nerves in my leg. We were instructed to return the next day and then I was excused by lunchtime the second day. I have no doubt that my leg situation made me an unwanted juror for that particular case. The good part was that I had the satisfaction of knowing that I had done my best and given it a shot. While there would have been absolutely nothing wrong with me being more cautious and having simply accepted a note from my doctor, I’m glad that I gave it my best shot.

In any event, I am really thankful (and lucky!) that the long stretches where I haven’t posted anything here have not resulted in people unsubscribing from my blog. On the rare occasions I’ve hopped online long enough to take a look at my blog statistics, the traffic has not dipped down in any kind of significant way. I can see that people are still reading my blog even when the most recent post is outdated. I can’t begin to express how grateful I am that people have been so patient and understanding. It’s too soon to tell when I’ll be able to get back on track the way I really want to but I am making every effort to do so.

In less than a month, it will be five years from when I started blogging. The thoughtful people I’ve met – through this blog, through my YouTube channel (which I really need to update more often!) and through social media – continue to amaze me. Thank you very much for your ongoing support and patience!

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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May 7, 2013   4 Comments

Sleep, Sleep, Sleep…

There is so much I want to do.

There is so much I want to say.

My body, however, won’t cooperate with my wishes… and that’s OK.

No matter how much there is to do.

No matter how much there is to say.

It will all have to wait for another day.

Right now… all I am concerned with is getting some sleep. No matter how much I’d rather be doing a number of other things, I need to listen to my body. It is screaming out for sleep. So, I am going to listen. Off I go to do just that…

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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January 10, 2012   4 Comments

Basic Functioning Mode

My online time has been extremely limited due to many factors. The primary reason is that I’ve been unbelievably busy in this way…

Gone Fishing!

(Image above via Cool Text)

It’s a joke. Just a joke!

Just kidding! I know… It’s a wee bit early for April Fool’s jokes, isn’t it? Seriously, though, even if I were an ice-fisher-woman (which I can assure you that I am most definitely not), I wouldn’t be out fishing now. No way! I’m lucky if I can walk to/from the car without my fibromyalgia and Reynaud’s announcing to me who’s boss. Trust me… they are the bosses!

You won’t ever catch me doing this!

In fact, the single-digit windchill temperatures have been wreaking havoc on me as far as fibromyalgia pain is concerned. So, the last thing I’ve been dreaming of doing is ice-fishing!

In addition to pain in every possible corner of my body due to a fibromyalgia flare-up, I have been dealing with migraines that have been forcing lots of time in bed to get extra sleep. It has been extremely frustrating to get further and further behind on everything but I couldn’t have forced myself to be online more if I had tried. I am now in what I call “basic functioning mode”. That means much of what I like to try to keep up on daily has gone out the window indefinitely.

So, I just wanted to take a few moments to surface long enough to say that I am not really fishing, I am not on vacation (hahaha… I’m full of jokes today!), and I am not ignoring my wonderful online friends. I am sleeping far more than usual, coping with incredible pain, and trying to be as productive as possible at a time when my body protests at nearly everything I try to do.

I believe showers tend to be under-appreciated until they become difficult to come by…

For example, one of my biggest accomplishments today was (gasp!) taking a shower. My husband located the shower chair that was stowed away in the basement (due to my history of falling and/or fainting in the shower at times like this). Thanks to that chair, I did it. Who knew taking a shower would ever be such a massive accomplishment? Three cheers for being clean!

When I’ll be up to writing again remains to be seen. As frustrating as it is to me when I am bursting with ideas to write about but unable to do so, I need to give my body time to recover from the holidays and adjust to the weather changes that are causing a sharp increase in fibromyalgia pain. I am dealing with the migraines as best I can. One day at a time.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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January 6, 2012   8 Comments

Chronic Travel: Planning And Implementation

I have written previously about a camping trip we recently took (see here and here). While I had concerns for how my body would handle such a trip (particularly how I would fare regarding fibromyalgia pain), I decided to go and hoped that my body would tolerate a trip of this nature and length. Since my interstitial cystitis can make it challenging to ride in a car for long stretches, I was sure to do a bladder instillation shortly before we left the house. This was very helpful in reducing the number of times we need to stop to find a rest room.

Planning phase: more complex with chronic illness…

While we chose camping over a hotel/motel (or a Bed & Breakfast) due to previous severely negative experiences with multiple chemical sensitivity (MCS) reactions, I was certainly aware that camping could present its own MCS challenges. Camping is most definitely not for all MCS patients. However, I felt that I was in a position to give it a try with the hope that I would not have any nasty reactions. We knew going in that I might have to bail out if anything were to make this necessary.

Yes, there was a bailout plan.

We decided we were willing to take the risks involved with this trip. Granted, this was a bit scary for me and I had to have faith that my husband would assist me in bailing out if that were to become necessary. Obviously, I would not have been happy if we had to cut our trip short due to my illnesses but it was important to know that bailing out would be an option. Had we done so, we would only have been out a couple of nights worth of campground fees (which wasn’t very much). We wouldn’t have been out the sort of money involved in cutting a hotel stay short. So, the stress of changing our plans and the fact that we would have lost the time we invested would have been the major losses if I had found myself unable to complete what we’d planned.

By the way, did I mention that we discovered on the first day that we had to turn roaming off on our cell phones because we were so close to Canada? Yes, it could have gotten very expensive if we had not turned off the roaming. It was very cool to put the canoe in (not far from our tent) and reach Canadian waters in no time, though. We also enjoyed our visit to the 1000 Islands Skydeck (mentioned in a previous post and located in Canada). We hadn’t been to Canada in quite awhile so this was the first time we needed to show enhanced drivers licenses (a less expensive alternative to passports). Having grown up never having to show anything to get into Canada or back into the United States, it felt odd having to produce enhanced drivers licenses and have them scanned. It was the most thorough border crossing I’ve ever experienced.

We purchased the tent about 4-5 months in advance so that we could air it out before the trip. It can be difficult to predict what I might react to and we needed to be sure we had ventilated it well enough before traveling so that I wouldn’t have an MCS reaction to it. Thankfully, the tent had no smell (that I could notice, anyway) when we first opened the box.

The tent, van, and canoe.

This was a pleasant surprise compared to what I was expecting. The tent worked very well throughout the trip. We were very careful getting in and out of the tent (trying not to let any bugs inside). Would you believe that we didn’t have a single bug in the tent in the 5 days we used it? It was well ventilated with plenty of windows. I was very pleased with it.

In addition to all of the normal things one does to plan for a trip, we had to evaluate whether the transportation we had could safely handle such a trip. My van (pictured above) was in and out of the auto shop a couple of times right before the trip.

Something that worried me pre-trip…

The pesky light above kept appearing on my dashboard. Needless to say, we needed to get to the bottom of why this light kept appearing since we didn’t want to be stranded somewhere far away from home with a broken-down car. Taking my husband’s car for the trip was out of the question for several reasons. For one, his car is too small and we wouldn’t have had enough space for what we were taking with us. For another, his car has slightly more miles than mine does (which is saying a lot considering the mileage on my van).

My odometer…

Finally, the seats in his car are far less comfortable than the ones in mine. So, from a fibromyalgia standpoint, taking his car for a trip like that was out of the question. Having been reassured by our trusted mechanic that the cause for the engine light was not something that was a safety issue (and was a repair he even said could wait to be fixed), we decided that the van was safe to drive. As I touched on previously, my husband was the primary packer. He organized our belongings well and got them to fit nicely inside of the van. We had reserved our campsite online.

Rest room access is always a top priority with my illnesses.

It goes without saying that the first criteria I had for choosing a campsite was proximity to the rest rooms. Our site ended up being about 500 feet from them. This distance to the rest room was workable for me… even if I accidentally wandered slightly off track on the way back to the tent in the middle of the night. (Note to self: don’t forget to wear your glasses when traipsing through the campground to the rest room in the middle of the night with it very dark). We were very fortunate in that we had no one next to us on one side for the entire time and we only had people next to us the first night on the other side.

This can’t be explained simply by the fact that we camped Monday through Friday (though I’m sure bypassing the weekend helped) because there were many, many areas of the state park that were packed like sardines. I am very grateful that we had no neighbors on either side for nearly the entire trip and that we were near a rest room. We could even see the lake from our campsite!

The last thing I wanted was to be crammed alongside lots of other campers in close proximity. We got lucky!

Before the trip was over, I had not-so-lovely visits from both endometriosis and migraine pain. Having lived with endometriosis since I was 13 years old, I have become accustomed to it acting up anytime I travel. So I wasn’t surprised. (It’s not something I can plan around either. That’s not how my body is wired). As for the migraine pain, I was thankful that it was short-lived. Neither “took over” the trip.

What was the biggest challenge/risk that surfaced during the trip? That would have to be when one of our neighbors burned something very nasty in the campground (seemingly from the row of campsites right behind ours). This campfire most definitely did not contain just wood burning in it (and I’m fully aware that some MCS patients wouldn’t be able to tolerate any campfire at all). To me, it smelled like burning plastic. That’s right. Burning. Plastic. The smell was so strong that I couldn’t imagine how it would dissipate anytime soon. We were just heading out for the day when this happened. I was afraid to leave our tent in that air but knew that taking the tent down would mean that we were going home. (There is no way my husband would go through the hassle of taking the tent down unless we were leaving).

Why people burn toxic items, I have no idea!

At this point, my husband (who isn’t always fond of what he tends to consider “making a scene” in regard to me having an MCS reaction)… made me incredibly proud. He stopped in at the registration desk and told them about the problem with someone burning far more than firewood. It was so incredibly hot that day that I stayed in the van with the air conditioning running when he went in. So, I don’t know precisely what he said or how he said it. All I know is that I was scared to return to our tent because if whatever was generating that smell didn’t get terminated very quickly, I knew we’d have to pack up and go home halfway through our trip. When we returned to our campsite later, there was NO smell. None. The park rangers must have taken very swift action because there wasn’t a trace of the smell when we got back. I was so happy that my husband spoke up and that the park’s staff was so responsive. Go New York State park rangers!

Also, I was pleasantly stunned to discover that the state park uses no toxic “air fresheners” in the campground rest rooms! (See this link for more information about Anne C. Steinemann, Ph.D., who has done research on “air fresheners” and other toxic products). I even had a brief chat with a manager up at the registration desk and it turns out they clean their lodges with green cleaning products. I didn’t enter any lodges and don’t know what products they use – but I was pleased to see them making an effort to select healthier products and to avoid unnecessarily exposing people to toxic chemicals. I was impressed!

This new store was a really good find:

One brutally hot (100+ Fahrenheit) day, we had gone into one of the towns (Clayton, NY) in the 1000 islands to eat and I spotted an adorable shop across the road from where we had parked. I was incredibly hot and I suggested we check out this shop not only because it looked cute but because I knew it would be air conditioned. (At that point, I was too impatient for cool air to even wait for the van’s air conditioning to kick in). So, we went and checked out the shop. It was like an oasis! Walking into the shop, we were immediately greeted by a very welcome wall of cold air. Inside, there were many beautiful items of clothing, hats, etc.

I found a warm hat for winter there…

Every winter, I’m always searching around the house for a good hat. With my short hair, my ears get cold. This shop had a snuggly, warm hat that will be great this winter. I know, I know… Who buys a winter hat on a 100+ degree day, right? Well, it was so nice and cool in the store that I wasn’t deterred from planning ahead for winter. We had a very nice chat with the store owner. As it turns out, the store is quite new. So new, in fact, that the website for it is not yet active.

However, I am linking to it anyway. I figure that way once the site is up and running anyone who reads this and goes on to travel in the 1000 islands may consider looking paca up. The name of the shop refers to the alpaca fibers that are used to make many of the items in the shop (including my hat). For those who may never travel to the 1000 islands, once that site is up and running it will give people a chance to shop online.

“In recent years, interest in alpaca fiber clothing has surged, perhaps partly because alpaca ranching has a reasonably low impact on the environment”.

Unfortunately, the crisp, clean bag it was packaged in got crunched in the car (thus no photos of that).

The owner of the shop was extremely friendly. She wrapped my purchase up in pretty turquoise tissue paper (sealed with the paca logo) and placed it in a white bag. She was the kind of person with whom you could just have a good, long chat. I’m not normally very chatty when I am shopping. So, it’s a bit unusual for me to be quite so chatty in anyplace that sells things. (Generally, I like to be in and out to dodge sales pitches and such). This shopkeeper, though, was totally non-pushy and let us browse around without making us feel pressured, rushed, or hovered over in any way.

Everything in the store was truly pretty and I felt like I was leaving the store with a special memento of our trip… in part because she took the time to wrap the package up and make it look so pretty. The whole shop was just gorgeous. I look forward to this shop going online because there were some very nice, reasonably priced items that would make nice gifts. Since I don’t step foot in malls due to my MCS, it’s always nice to discover new online shops. This shop really stood out and had some gorgeous merchandise. I told the owner when we were there that I might mention her shop online. Above is her business card. After discussing it with the owner, I decided not to display the phone number listed on her card (since she is still in the process of getting the shop set up… and unsure she wants that to be the number displayed on the Internet for her shop). So, I blocked out the phone number but the rest of the information you need to find her shop is there.

Finally… dessert. Are you a fudge fan?

Quite possibly the best, freshest fudge I have ever had was here: Lil’ River Fudge Co. If you’re ever in the area, I cannot over-emphasize how delicious this fudge was. They had locations in both Alexandria Bay, NY and Clayton, NY.

Well, I think it’s time for me to wrap up this 3 part series on traveling while chronically ill. Obviously, what works for one patient may not work for another. Let me try to wrap all of the loose ends up with a bow, so to speak.

Wrapping up…

The trip presented its challenges and not-so-relaxing moments. (That’s code for my husband and I found ourselves arguing a few times and that wasn’t fun). The way I look at it, the stakes were high for this trip. We invested money, time, and effort into making this trip happen. I risked increased pain and MCS reactions by trying such travel. When the stakes are high (and when pain levels are higher than they would be at home… in my case) and the temperatures outdoors are high, tempers will often flare. Was the trip perfect? No. Would I do a trip like it again? Yes. Will I be doing so anytime soon? No. It will be some time before we recover financially from this adventure and it will be some time for my body to recover as well.

All in all, though, I’m glad we took some chances and tried something we hadn’t done before. Now we know that, with some planning and effort, it IS possible for me to travel despite not being able to stay in hotels, motels, and/or Bed & Breakfast establishments. That knowledge is freeing for me. Now, all I have to do is recover from the trip. Thanks to a decent air mattress, the fibromyalgia pain wasn’t too out of control while we were camping. It was worse than at home (especially with the stairs at the castle and the walking around we did in town). However, I’ve had worse.

Finally… my 5 tips for traveling when one is chronically ill:

  • Know your limitations. Try to find ways to creatively work within those limitations.

  • If possible, have someone traveling with you to assist you with tasks you can’t (and/or shouldn’t) do.

  • Be flexible. Be open to adjusting your plans as needed. Weather, unexpected factors, and illness flare-ups can throw plans off.

  • Listen to your body and respond accordingly. Tweak plans if needed. The risk of burnout is not worth it. Rest as needed.

  • Enjoy what you can and focus on it and what you can do. Try not to get fixated on what you can’t do.

    I am acutely aware that some of my readers are housebound and that these last 3 posts on travel are not helpful in the aspect that one who is housebound can’t take the sort of chances I did with this trip. My hope is that maybe seeing the pictures (especially from the post about the castle) might still be worth a read for those unable to travel. Obviously different people are at different levels as far as what they are able to do and I don’t mean to suggest in any of these posts that anyone should take unsafe risks. The risks I took with this trip were ones I felt comfortable taking but I know that there are people who wouldn’t be able to take the same risks. Everyone is in a unique living situation. What works for one person may not work at all for another. Hopefully, these posts may provide some helpful tips, ideas, and even hope for those who are able to do limited travel. For those who are not in that position, my hope is that by sharing photos from my trip (along with a narrative on what it was like to prepare and carry out this travel) that you might get some enjoyment out of learning a bit about an area you may never have visited. For those of you who stuck with me through all 3 posts about my camping trip (from the bird’s “gift” to the lovely shop we discovered), thank you for your patience.

    We packed a great deal into a week and I really haven’t even scratched the surface but I tried to do the best overview I could. If you are chronically ill and wish to travel but are afraid to do so because of limitations imposed by your illness(es), it’s possible that travel is not a good idea for you at this time or it’s possible that you may be able to do so with sufficient planning and and a dose of courage. I wasn’t at all sure I’d make it through this trip but I did it and I’m glad I did. Everyone is different, though, and each person needs to evaluate his/her own situation to determine whether it is wise to travel. I just thought I’d share my experience in case it gives anyone ideas. I really think it’s important to stay safe and evaluate one’s own situation to ascertain whether traveling is advisable.

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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  • August 12, 2011   16 Comments

    Chronic Camping Continued: The Castle

    Boldt Castle on Heart Island: Alexandria Bay, NY

    It isn’t very often that I travel; it is challenging to do so because of the various chronic medical conditions I have. So, the camping trip we took in July took some joint effort with my husband (regarding both planning and implementation), significant support from him in the form of performing some of the physical tasks needed to make this trip happen and a leap of faith on my part. As I mentioned in the previous post, it is going to take me some time to recover from traveling. In this post, I am going to take a break from talking about the details of how I prepared for the trip (and such) to just share a few photos.

    The grounds

    I had been to the 1000 Islands once previous to this trip. I was a child at the time and I had seen Boldt Castle prior to its restoration. While the figure quoted online for restoration that has been completed on the castle is $29 million, we learned from talking to the staff at the castle that a more up-to-date figure for the ongoing restoration is $40 million. Having seen the castle as a child at a time when it was run-down and full of graffiti, I was amazed when I saw the website for Boldt Castle prior to our trip. As the trip was approaching, I was looking forward to seeing the castle in person since it looked so different than what I remembered. I was not disappointed by what we saw on our trip. It was absolutely gorgeous inside and out.

    The porch

    The difference between what the castle looked like when I saw it as a child and what it looks like now was a night and day contrast. It really was impressive to see what they have been able to to the interior and to the grounds. I knew going in that there would be many stairs and that touring the castle would be challenging for me. (By the way, there is an elevator). I have to say, though, that any fatigue and pain I experienced while touring the castle was well worth it. It is just a beautiful building. Heck, someone at the castle even had the good sense to have Enya playing the the background. In my opinion, that music set the perfect, soothing tone for people to take in this interesting building.

    It was a very hot day when we toured the castle. I overcame some anxiety stemming from the last time I was on a boat and we set off to take the short (5-10 minute), fume-free boat ride to the heart-shaped island where the castle is located. The cool, comfortable interior of the castle was refreshing after being in the hot sun. I will finish up this post with some photos from the castle…

    This reminded me of the ballroom in The Sound of Music.


    Striking difference in appearance from graffiti-filled walls…

    Very different than it looked when I was there 30+ years ago.

    Beautiful details…

    The white lace umbrella made me think of Somewhere In Time.

    There was stained glass…

    … in the ceiling.

    Click here for a virtual tour of the castle. Everyone at the castle was very friendly and informative. If you’re ever looking for a place to visit, I highly recommend the castle and surrounding region. With the many tourists visiting the castle, there was not a single time that day where I smelled any fragrances on anyone. We were amazingly fortunate to visit such a busy place without me having and multiple chemical sensitivity reactions. (Other illnesses were talking to me but I tried to temporarily ignore their voices… knowing that I would pay a price later and accepting that likelihood). I was just very thankful that I didn’t react to any toxic fragrances in that crowded castle. (Crowds can be dangerous for me and it was bustling with tourists).

    Check out the website for a winter photograph of the castle surrounded by snowy trees. It’s very pretty!

    Having seen the final Harry Potter movie, which was awesome, right before the trip somehow seemed to make walking through the castle even more fun.

    There were definitely very challenging moments of the trip but I am grateful that my chronic illnesses didn’t stop me from trying something new. The trip was far from perfect but I’m thankful to have made it through the entire five days, as scheduled. Doing so was a major milestone for me… especially with the oppressive heat. When I get the energy, I will be writing more about our camping adventure.

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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    August 5, 2011   6 Comments

    Chronic Camp ‘Carnival’

    Behold: ‘Home Sweet Home’ (from July 18 – 22). I kid you not!

    My mother’s comment when we had returned safely from our camping trip was, “how did you do it”?! What a loaded question! (She knows that I have never done an adventure like this before and that tent camping itself poses all sorts of challenges for me health-wise). I will write more about all that in future posts. For now, let me just say that I was grateful for the opportunity to travel (something I do rarely) and I was also grateful to return home afterwards. We got some lovely photos that I’ll be sharing in future posts. Before I talk about the camping trip any more, let me digress just a bit for some ‘blog housekeeping’…

    The month that I blogged the least ever (since I began writing online in June 2008) was last month. A quick peek at my archives shows just how much less frequently I have been writing lately. I realize some people may even be wondering if I have burned out or abandoned my blog since I have updated it so infrequently lately. I haven’t abandoned it. I have come closer than I would like to regarding burning out in recent months. Posts like this and this might have given that away to some of you. It will take me some time to get back on track but I’m working on it. At the same time, I am listening to my body. In the aftermath of the (sometimes wild) trip I’m beginning to write about today, I need to get enough rest. Thank you for your patience. A few of you have sent me messages asking if I’m alright. I appreciate your concern.

    Anyway, back to the tent photo. For those of you who are campers, that may look like paradise. For those of you who are not campers, that tent may not look like where you’d choose to stay for a week in the extreme heat of July! (One day reached 102 degrees Fahrenheit – or 38.89 Celsius). With my heat intolerance (discussed previously here), the weather was a major issue for me. I’m not complaining. I signed up for a July trip. I was prepared to give it my all and hope for the best.

    View from 1000 Islands Skydeck on a hazy 102 degree Fahrenheit/38.89 Celsius day

    I had hoped to write about the trip to the 1000 Islands this past week but my body is still working hard to recover from traveling. This was in many ways the most ambitious travel, by far, that I have done in a great many years. So, it will take me some time to catch my breath (and multiple posts to talk about what it was like to travel the way we did when my health is so poor).

    We knew going in it wouldn’t be easy. We also knew that tent camping was the only way we could do overnight travel because of my multiple chemical sensitivity (MCS). Besides, we couldn’t have afforded a hotel or motel anyway. (Another perk of camping: campsites are very reasonable). Food and gas were our main expenses for the trip. There were no worries about expensive lodging costs with camping being so affordable.

    The last time we did a trip overnight, we tried staying at a Bed and Breakfast. Unfortunately, despite the pre-screening I did of the B & B over the phone, it became readily apparent that it was as dangerous for me as any hotel or motel would have been. (It was really a disaster). That B & B trip was our final attempt to travel overnight in such a manner. Last summer we abandoned the idea of overnight travel. (Having been burned the summer before by that B & B experience, we elected last summer to do an extremely ambitious day trip). On that trip, we fit far, far too much driving into one day. (That really should have been an overnight trip rather than a day trip). While the end result worked out in that case, we really pushed our luck and it could just have easily turned out much differently. It was way more driving in one day than it makes logical sense to do. That trip we got lucky. I’m not sure I’d ever do that much traveling in one day again, though.

    Tent camping emerged as a way we might travel overnight more safely than by staying in chemical-laden hotels/motels and more safely than by packing way too much driving into one day’s time. We knew it wouldn’t be risk-free but we felt we had to give it a chance if we ever want to be able to do overnight travel. I certainly knew there might be MCS problems camping as well. The only way for me to find out whether tent camping is something that is safe for me to try (fully understanding that whether I have a reaction depends on who my campground neighbors are and what they are doing) was to just do it. (I should note that I am fully aware that this option would be totally out of the question for patients with more severe MCS, some of whom are home-bound because of the illness).

    My husband packed our hammock into the van when I wasn’t looking. (Without my husband’s amazing hard work packing and physically preparing for the trip, it never would have happened). It worked out great one day when I had really had enough canoe time but he hadn’t. We got out of the water, he set up the hammock, and I rested while he went back out in the canoe. In this way, I was able to rest when I needed to and he wasn’t constrained to only canoeing when I felt up to it. The hammock was a nice surprise. I had no idea he had found a way to fit it in the very crowded van full of an air mattress, sleeping bags, a tent, bicycles, clothes, etc. We even had a cherry (oops – I mean a canoe) packed on top of the van for good measure. My husband really did an awesome job packing everything. We didn’t leave a single thing we needed behind. That’s not bad for a week-long trip! I was very grateful for his efforts. (Note to self: the downside of not paying attention during the packing process is not knowing where anything is without searching or asking – for the whole trip)! Anyway, there is much to tell about our week-long trip. Some of it was fun. Some of it was incredibly difficult. Some of it fell somewhere in between.

    I will close this particular post with a tidbit about something that happened on our very first day at the campsite. It is one of those stories that will most likely read funnier than it felt when it happened. It’s OK if you laugh when you read this. I’ll understand. You see… on our first day at the campsite, a bird decided that my head would be the ideal place to deposit a little “gift”. I felt something land on my head and I then bent forward slightly and asked my husband to check my head. Sure enough, he discovered the thoughtful “gift” that had been deposited right on top of my head and remarked, “only you, Jeanne” (in disbelief that of all the places this bird could have left the “gift”, my head would end up being it). Apparently, he thinks I have rotten luck.

    He had seen blackbirds nesting nearby and believes it was a blackbird who presented me with this lovely “welcome to your campsite” gift. So, it was off to the the campground shower for me. Sigh. I wasn’t too thrilled at this inauspicious beginning to the trip. However, once I had showered and was ready to start the day (again), I chuckled to myself recalling that a few days before the trip I had read on a Facebook friend’s wall about her having had a similar experience. Her Facebook friends inundated her with comments about it being “good luck”. I’m not a superstitious person but I decided to Google it today, for fun, and see what would come up. I found remarks from the expected combination of people who swear it’s a good luck omen with people or who swear it’s a myth.

    In any event, our trip was off to a very, um, memorable start one way or another. I tried to keep a sense of humor about it. Actually, I saw absolutely no humor whatsoever when it happened but post-shower and with clean hair again, I was able to laugh about it. (Did I mention that many years ago, another bird left me a gift as I was walking down the street and the name of the street was Bird Street? I kid you not). The fact that this was my second “gift” received over the years resulted in all sorts of hilarity with us joking around and trying to predict when the ‘third turd’ would make an appearance. Thankfully, this was a ‘one-bird-gift-only’ trip.

    There were multiple osprey nests in the area. My husband kept cheering me up by saying, “just be glad it wasn’t an osprey that got you”. The ospreys were beautiful and interesting to watch. I was also grateful that it wasn’t an osprey that left me a “gift”. Those birds are huge!

    When time and energy permit it, I’ll be writing more about the trip. So, if you’d like to learn more about how I slept in a tent for a whole week… stay tuned for upcoming posts. (Anyone who knows me in real life expresses shock when they hear that I spent a week in a tent in the heat of July). There were plenty of barriers to be accommodated on this trip and it was most definitely not easy. However, we made it through the scheduled time for our trip and we even managed to fit in some fun and some beautiful sights. Given the extraordinarily hot weather and my various illnesses acting up throughout the trip, I see this as an accomplishment worth celebrating. We could have bailed early but we decided to hang in there and I’m glad we did… even if I will be in “payback mode” with symptom exacerbation for weeks to come. Stay tuned for more about our camping adventure in future posts – a trip which truly did have a carnival-type atmosphere (and not always in the fun sense) at times. Let’s just say we were never bored!

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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    August 1, 2011   9 Comments

    My Sun Appreciation

    I know that the preceding post was pretty dreary. When the sun finally made an appearance this weekend, it was wonderful!

    We even managed to get in a short bike ride on Sunday. This was nice since the incessant rain has meant I’ve gotten very little use out of my new bike. I need to build up the distance I ride very gradually because my muscles aren’t always thrilled during bike rides. So, I’m taking it slow. This whole biking adventure is a big deal for me because my ability to exercise without triggering pain (mainly fibromyalgia pain) has been a major issue for many years now.

    I also have to be mindful of pesticides. With my multiple chemical sensitivity, it is important that I ride in areas that have not been sprayed. This can be a challenge at this time of year where I live.

    I can’t ever remember having so many rainy days consecutively like that. My muscle pain has been extreme. Anyway, when I set out to write something yesterday, I was aiming for something a bit more cheerful than my last post. I didn’t get very far writing yesterday before being interrupted. However, I did find an audio clip of a song that has been stuck in my head for days. With no disrespect to The Beatles, I don’t ordinarily have their songs stuck in my head. However, this song kept popping into my head during all of those back to back rainy days:

    Here Comes The Sun – The Beatles

    In any event, after about 24 rain-free hours, we had lots of rain again last night. There was even hail predicted but I didn’t see or hear any. Today, the sun is back out. My poor muscles are confused by all of the changes in the weather. However, I’m very grateful to be migraine-free right now.

    While I have no shortage of ideas for topics to write about, I have been having difficulty with fatigue. It is frustrating to be bursting with ideas that I can’t get down as quickly as I’d like. It is what it is, though.

    So, I will close with two photos that I took in our garden on one of the only days this month that it was not raining. Hopefully you all are practicing gentle self-care, advocating for yourselves, seeking out the support you need for coping with your illnesses, and maybe even enjoying some fresh air if it ever stops raining where you are.

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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    May 23, 2011   6 Comments

    Rain, Pain, Drain…

    Lately, every single day looks very much like this…

    This weather is triggering fibromyalgia pain and it is also draining me with fatigue. At some point, when every single day doesn’t look like this, I hope to be writing more frequently. For now, it’s difficult to be very productive. My muscles just ache.

    Apparently, when I recently bought some sunglasses to cope with the hypersensitivity to sunlight that I have been having with my migraines, it triggered the universe to make it rain every day. All I know is that I got to wear those sunglasses a grand total of once (the day I got them). I believe that was about 8 days ago, if memory serves. They’ve literally been in the case ever since then.

    Hopefully the weather is nicer wherever you are. I’m looking forward to a sunny day riding my bike with my sunglasses on. Hopefully that day will arrive sooner rather than later.

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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    May 17, 2011   3 Comments

    Today Is Awareness Day… May 12, 2011

    Wouldn’t it be nice if we could fill billboards with the messages we hold dear?

    While I had many ideas for what I was going to write about today, several circumstances that were out of my control (including losing Internet access at my house and currently linking a smart-phone to my computer in order to finish this post) prevented me from spending the time I was hoping on today’s post. Therefore, this year’s May 12th post will be a short one. It is no less heartfelt. Hopefully a short post is better than none at all for the purpose of raising awareness about several chronic conditions that are recognized either in the month of May and/or on May 12th itself. I hope that you’ll check out the links below for more information on these conditions:

    Last but not least, I haven’t had the opportunity to see the film Under Our Skin, about Lyme Disease, but the trailers look compelling. According to the film’s website, it is currently airing on PBS stations. See the listings on the site for dates and times: here.

    May is Lyme Disease Awareness Month. For information about a Lyme Disease protest on May 21, 2011 in Washington D.C., click:

    Please help spread awareness about these and other chronic conditions. Thank you!

    This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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    May 13, 2011   6 Comments