Category — Multiple Chemical Sensitivity
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)!
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!
May 7, 2013 4 Comments
Spring is in the air! It’s that time of year (in my part of the world, anyway) where people tend to spend more time outdoors.
Since it’s Endometriosis Awareness Month, I wanted to highlight some new research that I think is worth noting. Today I received an email that referred to a study about sunscreen and endometriosis:
Here is a link with more information:
The link above is for the abstract only. I don’t have the ability to access the full article. However, the abstract says:
“exposure to elevated 2,4OH-BP levels may be associated with endometriosis”
Given that this chemical affects estrogenic activity, it’s helpful to know about this new research (and the fact that the researchers speculate that 2,4OH-BP may be associated with endometriosis).
For those who are not aware, endometriosis has been associated with an increased risk for developing melanoma:
If you’re looking for a place to learn about sunscreens, you may want to try this site:
To be clear, I’m not here to provide anyone with sunscreen advice. I myself have very fair skin that burns very easily (no matter how carefully I dress or try to avoid mid-day sun) and I’m not really thrilled with the limited options available. (See “Sunscreens Exposed: 9 surprising truths”). It’s interesting to me that Europe apparently has superior options available for sunscreen due to FDA delays in approving ingredients already used there.
Since I have multiple chemical sensitivity, I sometimes have reactions to other people’s sunscreen – especially since the spray sunscreens came onto the market. Some of those sprays make me so sick! Last summer, we were at the beach and someone about 40 feet away from me sprayed it. The wind carried it right over to me and I didn’t need the sunscreen database to tell me that there were some nasty chemicals in it!
Hopefully, this sunscreen guide will help people make informed decisions.
It’s always helpful to be able to make informed purchasing decisions… especially with regard to products that can impact one’s health.
When I’m going to be outside for any length of time in the sun, I try to wear long sleeves if possible. (I’m famous for stealing my husband’s old dress shirts for this purpose). I make sure to wear a hat and sunglasses too. There are definitely times I feel the need to wear sunscreen. For those times, I use the sunscreen database to find a mineral-type product and I avoid sunscreens that have endocrine-disrupting chemicals in them. I seek out shade when at all possible. (This is helpful for dealing with the heat intolerance and syncope issues I struggle with in warmer weather as well).
March 22, 2012 2 Comments
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.
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.
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.
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.
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).
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.
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!
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).
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!
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.
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”.
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.
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.
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.
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.
August 12, 2011 16 Comments
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.
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 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…
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.
August 5, 2011 6 Comments
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.
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!
August 1, 2011 9 Comments
This past weekend, we had relatives in from out of state and one of the first activities we decided to do was take a ride across a lake in a paddlewheel boat. Given the options available for recreational activities and factoring in for what I am/am not physically capable of doing, taking a ride on a lovely paddlewheel boat sounded like a relatively low-risk activity.
The last time (prior to this past weekend) I had ridden in such a boat, about 80% of the time was thoroughly enjoyable. The remainder of the time on that prior ride was spent dodging fumes from the boat itself (as it made the turn to head back across the lake to where it had started). So, I knew going in that I was taking some risk as far as potential reactions with multiple chemical sensitivity (MCS).
However, quite frankly, I am weighing MCS risks every minute of every day that I’m not safely at home… and even at home I sometimes encounter unexpected/unavoidable chemical exposures. So, the potential for risk of any significant exposure seemed relatively low to me. I knew it wasn’t risk-free. However, since nothing is risk-free for me regarding chemical sensitivity exposures, I went into the boat ride comfortable that the risks were about as low as with any activity we might pick. Little did I know then what I quickly figured out.
After we boarded the boat last weekend, it quickly became apparent that I was in for an unexpected exposure. By the way, I should mention that it was officially pre-season. So, the things that were open were just ramping up. We were informed when we boarded the boat, for example, that it was only the second time it had been out this year. What quickly became obvious was that the boat had just been painted. Trust me when I tell you that they had clearly not used
low-VOC (low volatile-organic compounds) paint.
My fight or flight response kicked in once we had boarded and gotten situated. Since chemical exposures make it much more difficult for me to think, it took me a few minutes to fully register the situation. (In other words, the boat had left shore by the time my brain registered what chemical exposure I was facing):
I had no idea how long the boat ride was scheduled for. I did know that I was feeling very ill within the first five minutes or less. I was downright scared because I felt faint mere minutes into the boat ride. Unlike MCS reactions on land (where there is usually some way to get away from the source of the reaction), I was on a boat with no way to get away from it. I think this part scared me more than anything as time went on and I realized just how concentrated the fumes were. An MCS reaction is bad enough on land. I discovered that to have a reaction while trapped on a boat is far more nerve-wracking. (The previous paddlewheel boat ride where I had a reaction to the boat’s fumes (which wasn’t pleasant) was extremely minor compared to this. I had never had a reaction of this severity while in a place I couldn’t physically escape).
I felt dizzy, I was having trouble breathing, my head hurt (which progressed over time into a migraine), I was having neurological symptoms (when I attempted to walk, I was falling down and must have looked like I was drunk or something), I was nauseous and I felt like I was going to faint. (A couple of people asked me if I was seasick. I don’t ever get seasick. That was not the issue at all).
Initially, I sat on a deck chair and hoped to ride it out by sitting still. It quickly became apparent that this approach was not going to work. Since this was pre-season and the temperatures were quite chilly, the boat had transparent flaps hanging down all around the boat rather than having them up like they’d be in the summertime when it’s hot out. As I sat in the chair, I noticed an opening at the base corner of the flaps. I decided to try getting some fresh air by putting my head out the small bottom corner of one of the flaps.
Fresh air never felt so good! I had found where I would spend the remainder of the boat ride. I was so, so grateful for fresh air. By sticking my head out of that flap, I was able to get deep breaths of fresh air. As the boat moved along, I took great gulps of air that had no paint fumes at all.
While I normally don’t stand on my feet anywhere near that long because of various medical conditions (including peripheral neuropathy and venous insufficiency), there wasn’t a doubt in my mind that my need for fresh air far super-ceded any other health needs.
So, sore feet (no matter how painful) had to take a backseat because if I didn’t get that fresh air, there is no doubt in my mind that I would have fainted. My feet would have to wait. Since I suspected the boat’s deck was the source of the paint fumes, fainting would have given me an “up close and personal” meeting that I most definitely did not want. I have fainted due to new carpet fumes many times over the years. Coming back to consciousness on the very surface that caused me to faint was never a good thing. Fainting on the boat would have been even worse because the odds of me hitting my head on a hard surface would be greater… among other reasons.
Don’t get me wrong. I understand that boats require maintenance. No one wants their boat looking like this…
Knowing that the chemicals that make me as an MCS patient sick are not healthy for anyone, I found myself worrying about those around me (whether I knew them or not). After all, I was getting fresh air but they were not and the ride was approximately two hours long. I fully understand that people who are not chemically sensitive are not bothered, on an immediate level, the way I was but I found myself concerned at what this paint inhalation was doing to them. The long-term effects could be another story. The fumes were extremely intense for me. While it amazed me (as always) that some people didn’t smell it at all, I know that the health effects can affect more than just MCS patients.
In a perfect world, I just wish that the boat company had used
low-VOC (low volatile-organic compounds) paint and had properly ventilated the area before taking passengers out for rides.
It should (and would have) have been a pleasant, fun boat ride without the overpowering paint fumes. Instead, I spent the boat ride with my head literally sticking out the side of the boat. My husband tells me that people who saw me with my head stick out the small hole in the boat’s side flaps assumed I was seasick. Well, I was sick alright but I wasn’t seasick! “Paint-sick” would be a more accurate description. I am grateful that I was able to find a way to get fresh air. There isn’t a doubt in my mind that, otherwise, this boat ride would have joined the ranks of public places where I have fainted.
June 16, 2011 3 Comments
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:
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.
May 23, 2011 6 Comments
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!
May 13, 2011 6 Comments
The migraine pain (over the past month) has ranged from mild at times to very severe at other times but it has never left completely (except for about three hours one day and for a couple of hours another day when I thought it was leaving but it quickly came back full force – even harder than before).
Sensitivity to light and sound have been severe all month. Sounds I normally wouldn’t be bothered by are very painful to my ears and head. I have had waves of nausea coming and going. Occasionally one eyeball will hurt for about two to three hours before dissipating.
Yesterday was the lowest level of migraine pain I have had since March 31st. I started to think the migraine was finally lifting. When I woke up today, my head was still not normal but I would no longer call what I have today migraine pain. I believe that I am now in the postdrome phase described here. I am hoping that my head will feel 100% normal soon. It has fooled me before but I think it’s really lifting this time. Time will tell.
Unfortunately, I don’t have the energy to write in very much detail about what has been happening with my migraines these last few months. In a nutshell, though, I was having some reduction in the number and frequency of migraines (after starting both physical therapy for cervicogenic triggers for migraines and acupuncture to treat migraines). I was still getting migraines but they weren’t as bad once I had started the cervicogenic migraine physical therapy and acupuncture focused on them. I was grateful to have some improvement. I knew there was no quick fix and that any improvement was worth appreciation.
Prior to starting physical therapy and acupuncture for migraines, I had noticed patterns in the timing of my migraines that suggested hormonal fluctuation is one of the major migraine triggers for me. The wonderful physical therapist who has been working on treating the migraines triggered by cervicogenic issues thinks I need to talk to my doctor about the hormonal situation. I plan to do so in my next appointment with my primary care physician (next week).
In the meantime, I saw the neurologist Thursday and it was an enormous waste of time. It was difficult for me to drive to/from that appointment. (If I don’t feel like it’s safe for me to drive, I don’t… no matter what I have scheduled. It’s not worth risking an accident). For nearly three weeks, I didn’t even feel it was safe to drive around town – much less to an appointment an hour away. Thursday was only the second time in a month that I had driven for more than five minutes. The amount of time, money and energy that were utterly wasted on that appointment totally frustrated me. That tale is far too exhausting for me to relive at the moment but the good news is that the brain MRI (looking for multiple sclerosis) yielded normal results. Maybe someday I’ll have the energy to get into more detail regarding why I believe the neurologist appointment Thursday was a waste of time.
I haven’t been online much but on the rare occasions that I have, I’ve gotten great support from other people who experience migraines. Let’s just say that apparently I’m not the only one who has experienced difficulty in finding a good neurologist for treating migraines. Thank you to those of you who have reached out to me regarding your own experiences with and knowledge of migraines. I really appreciate your support.
Now, please bear with me for going on a tangent about sleep apnea treatment… I had previously mentioned in passing the difficulty I have had finding a CPAP headgear to treat my sleep apnea. I got a new CPAP headgear on March 24th. I was very excited that (after years of unsuccessfully trying to find a headgear that my head could physically tolerate – no matter how carefully I screened out ones with materials I have a known allergy or sensitivity to), I had found one my head could physically tolerate (no sores on my head due to a reaction to the material of the headgear)! The fact that I had finally found one (pictured) that I wore night after night with no adverse reaction on my scalp was the good news.
The bad news is that the daytime fatigue and sleepiness I have experienced in about the last month (despite having gotten plenty of sleep at night… more than usual, in fact) has been so severe that I decided about a week ago to try not using the CPAP for awhile to see if the fatigue improves. (I am currently trying to determine whether the new plastic tubing for my CPAP machine might be out-gassing chemicals that are exacerbating my multiple chemical sensitivity, whether the fatigue is migraine-induced, or both). Since stopping CPAP about a week ago, the fatigue has improved a bit. However, the migraine has improved in that time too. So, it remains to be seen what caused the incapacitating fatigue and sleepiness I have been experiencing in the past month. I would very much like to go back to wearing my newest headgear, pictured above, if I can rule out the plastic tubing that attaches to it as causing any of my fatigue and sleepiness problems in the last few weeks. I know the risks of untreated sleep apnea (i.e. that cardiovascular trouble has been found to be up to three times more likely):
Needless to say, I am anxious to resume treatment for the sleep apnea since I don’t wish to increase my odds of having cardiovascular trouble. I’ve tried running the CPAP machine when I’m not wearing it to flush out the plastic tubing but I’m not sure how much good that has done, if the tubing is causing symptoms. I washed the tubing with distilled water, as directed, before using it. Other than allowing it to air out over time, I don’t really know how I can get it to out-gas more quickly.
Hopefully, the fatigue is from the migraines and not the CPAP tubing and I will be able to resume wearing my CPAP headgear soon.
My husband reports my snoring had stopped when I was using CPAP. According to the doctor who ordered the sleep study that diagnosed the sleep apnea, treating that should help the symptoms of all of my illnesses (since it’s not healthy to stop breathing throughout the night). The sleep disorder clinic had told me when I was diagnosed with obstructive sleep apnea that they recorded zero restorative sleep for me. Zero. I hadn’t had dreams in many years because I never reached that stage of sleep. With the CPAP machine, I was having dreams. That tells me I was getting into a deeper level of sleep than I had in years. Yet I was more tired than ever when I woke up each day. So, the trick now is to sort out whether the new plastic tubing is out-gassing chemicals that are causing the fatigue and sleepiness or not. In the meantime, I am seeing how I fare without it. Since the severe fatigue and sleepiness started right about when I started the CPAP and right about when this most recent migraine started, it’s hard to know for sure what’s the cause.
Managing the migraines and sorting out whether the CPAP machine is or isn’t causing the severe fatigue/sleepiness are what I’ve been focusing on lately. Other factors have prevented me from being online very much as well. Thank you for your patience. I am going to try to resume a more typical schedule for blog posts as soon as I am able. Several of you have sent me messages asking how things are going lately. I appreciate you thinking of me and would like to thank you for your support.
April 30, 2011 12 Comments
For 29 years, I have lived with endometriosis. Nineteen years ago this month, I was diagnosed with endometriosis via an outpatient surgery called laparoscopy. (By the way, this type of outpatient surgery is the definitive method for diagnosing endometriosis).
In the first ten years that I lived with endometriosis, I knew something must be wrong but I didn’t have a name for it. It wasn’t until March 1992, at the age of 23, that I was properly diagnosed with endometriosis.
Looking back, I am truly amazed at what I experienced in those first 10 years. That picture of the woman on the floor above triggered memories for me of how much time I spent lying on the floor in years past. Lying on the floor of the bathroom was a common thing for me because nausea and vomiting were a major problem for me in the early years.
I have written about endometriosis in regard to teenagers HERE and HERE. As you can see from the outpouring of comments on these posts, women who have lived through teen years with endometriosis symptoms are passionate about supporting girls who are currently going through similar experiences. They are eager to help these girls because they remember all too well what it felt like to live with endometriosis as a preteen or as a teenager.
I’ve also written previously about some of my own personal (least favorite) memories of being a teenager living with endometriosis.
Also, I was interviewed during Endometriosis Awareness Month in 2009 by Amy Jussel of Shaping Youth for the purpose of helping preteens/teens and their parents know what to look for, when to suspect endometriosis, and what to do about it:
I am passionate about the topic of endometriosis awareness. I am particularly interested in the well-being of preteens and teenagers who are living with undiagnosed endometriosis because I remember what it felt like as if it were yesterday.
Blacking out from the pain caused by endometriosis, vomiting with periods, excruciating abdominal pain that affected my quality of life in profound ways, severe hemorrhaging, frightening blood clots, intestinal pain, bladder pain, and so much more were my “normal” for many years.
When I was in high school, there were many times that I forced myself to go to school but was then physically unable to make it through the day. I was a straight A student and I WANTED to be in class. Nevertheless, any time I would reluctantly drag myself to the nurse’s office because my body refused to cooperate with my strong desire to be in class, the nurse always treated me as if I were some slacker who simply wanted an excuse to skip class. Nothing could have been further from the truth.
Once the nurse gave up on me being able to go back to class and she let me call for a ride, I would wait out by the front door of my high school. There were two stairways… one on either side of the short hallway that led out to the front vestibule area. There was a heater vent there. My high school didn’t look as dingy as that picture above. However, that heater vent reminded me of how I would sit on the floor, curled up and bent over in front of the vent as I waited for my ride.
It seems like the worst of these times in high school happened during senior year because many of the times I waited for a ride, my friend Nancy was there, by my side… keeping me company, cheering me up, and waiting for our ride. (There was some sort of rule senior year that you could schedule your study hall for last period and be able to leave before regular dismissal time. Somehow we managed to leave early without getting in trouble thanks to that awesome rule). I honestly don’t know what I would have done in my teenage years without Nancy’s support. She was always there for me and I will be eternally grateful for her support during one of the most challenging times in my life.
Eleven years after we graduated from high school, it was Nancy who stood by me as my maid of honor.
In any event, I really don’t want to get too dark and dreary talking about how difficult is was to be a teenager living with undiagnosed endometriosis. Quite the contrary. I decided to write this post in the hope that, like the other posts I have written about teens living with suspected endometriosis, teens and/or their parents who are searching the Internet for information might find this post and hear this message:
Without providing an elaborate list of the many steps I have taken between my teens years and now to cope with endometriosis and manage my symptoms, I’ll just say (in a short, simplified list) that after having multiple surgeries; trying various medications; investigating alternative medicine; finding that certain things (i.e. acupuncture!!!) have helped me greatly; and finding doctors who are knowledgeable, highly skilled, trustworthy, compassionate, and ethical… my endometriosis is much better-controlled now than it was years ago.
There is no cure for endometriosis. However, there is hope. There are a great number of treatment options (some of which are generally not mentioned by Traditional Western medical doctors) available. It takes time and persistence to learn about everything that is available (and there is a minefield I will generically label “scammers” to watch out for) but it IS possible to get pain relief or reduction and more.
One caution: To elaborate on what I mentioned above, there are many scammers who prey on endometriosis patients. There are doctors who call themselves “endometriosis specialists” but who I would not want treating me! It is absolutely imperative to find the doctor who is right for you. This process can be challenging and confusing. Just bear in mind that some doctors are very hyped up as being “experts” but that doesn’t necessarily mean anything. There are doctors who are great at self-promotion but that doesn’t necessarily mean that they can deliver on their promises.
Living with endometriosis is challenging. Getting diagnosed in the first place is typically challenging too. When you’re dealing with an illness where 10 years from onset of symptoms to diagnosis is the average, there is obviously much room for improvement in getting people diagnosed earlier.
No matter how challenging endometriosis can be (to get diagnosed in the first place or to live with it once diagnosed), things can get better. There are options available for managing symptoms. They may be difficult to find. What works for one patient may not work for another. Researching and making sure that options are safe and effective (as opposed to marketing scams and such) is very important. Mutual support between fellow patients is crucial and incredibly helpful.
My point is not to have a fairy tale ending here. There is no cure for endometriosis. In that sense, there is no fairy tale ending. However, things can get better. It is important to have hope. I am 42 years old. I have lived with endometriosis since I was 13 years old. That’s a large proportion of my life! I remember what it felt like (in my teens and most of my 20s) to lose hope, to be very scared, to be afraid I would never get pain relief, etc. I don’t feel that way anymore.
I have a sense of peace now that I didn’t have in my younger years.
Are things always peaceful? No way! Just ask any of my friends or loved ones. I can vent with the best of them. However, when I compare my outlook now with where I was at in my teens and 20s, it’s like night and day.
Despite the fact that I have been diagnosed with a large number of chronic conditions since my endometriosis was diagnosed in 1992 (many of which are co-existing conditions to endometriosis), I don’t feel the sense of desperation and hopelessness that I used to feel. Years of mutual support, support groups, meeting people online who “get it”, learning from other patients about things I never would have learned about from my doctors, doing my own research/reading, advocating for myself, and working with other patients to try to increase awareness of this serious illness have left me feeling empowered.
Please sign the endometriosis awareness petition. The comments left on it in the optional comment field by some of the signers bring me to tears. The more people work together, the better off endometriosis patients will be. By the way, thank you to everyone who has been sharing the petition link on Facebook and Twitter and those who have Facebook ‘liked’ the petition page. The number of people signing the petition has really picked up recently. Let’s keep it up!
An estimated 89 MILLION women & girls worldwide (conservative estimate) have endometriosis!
March 7, 2011 55 Comments