Helping women with chronic illnesses

Category — Co-existing Conditions

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

How Can I Go Bicycling With Vulvodynia?

Since 1996, I had not ridden a bicycle… until now. After a great deal of planning, saving, and wishing, I rode this past weekend.

In 1996, I attempted to ride a tandem bicycle with my husband (who was then my boyfriend). His parents had a tandem and he was really into biking. Even though I hadn’t ridden in quite awhile, I gave it a try in 1996. Let’s just say it was a short ride. While I had not been officially diagnosed with vulvodynia yet, I knew that riding a bicycle had become extremely painful. The brief 1996 ride on the tandem made it clear to me that riding a bicycle with a traditional seat was physically impossible. Thus began my 15 years without any bicycle riding at all.

I haven’t written much about vulvodynia. Why? Well, all of the treatments I tried were useless. While I have a very capable doctor, he has been unable to find anything to effectively treat my symptoms. So, writing about vulvodynia isn’t really my favorite thing to do. I simply haven’t had much to say about it. After all, who wants to read me listing off all of the failed treatments I have tried for it? Today, however, I wanted to share some good news regarding engaging in an activity I had given up on… simply by finding the right equipment to accommodate my needs.

For several years now, my husband and I have discussed how I might possibly ride a bike again. He suggested that we look into a recumbent trike. This was not a purchase we had the luxury of just jumping into. Unfortunately, this type of bicycle (or tricycle, actually) is not inexpensive. We have been planning for this for awhile and looking at it as an investment. Rather than me being left behind at home for bike outings, I will now be able to participate.

Here is a quick aside about vulvodynia, which can cause tremendous, debilitating pain:

“Like many other people suffering from pain disorders, those afflicted with vulvodynia may often be impacted by the frustration of finding a diagnosis, subsequently confronted with an area of medicine that is still in relative infancy. The cause is still unknown and treatment success varies. Therefore, many become frustrated and sometimes depressed with a lower quality of life”.

Biking is a great way for me to get exercise. This is absolutely huge because my fibromyalgia and neuropathy make exercise very difficult. I can’t even tolerate gentle yoga due to the fibromyalgia. So, to have a means of getting exercise that my body is handling well is fantastic. Granted, my leg muscles were noticing that I was asking them to do things they are not used to when I took this for the first couple of spins. However, my body tolerated it quite well. I had discussed recumbent trikes with my physical therapist recently and she thought it was a great idea.

While I don’t normally make it a habit of referring to specific brand names on my blog, I am linking to the model I got so that if any other patients are looking for a recumbent trike, they will be able to see the model that is working well for me.

I should probably explain that I cannot tolerate sitting on any hard surface anywhere. When I am at the computer, like I am now, I am sitting on top of blankets that are folded and placed on my computer chair. So, for me to find the seat of this recumbent trike comfortable is nothing short of a miracle. The seat also has a back rest. It is amazingly supportive. With my history of back problems, this is important.

So, in writing this post today, my goal is not to say, “hey everyone who has vulvodynia… you would love this recumbent trike”. I know that it may not be feasible for (or desired by) everyone. Goodness knows it took years of planning for us to make it happen. My intent is to give people – no matter what their chronic illness(es) may be – hope that there are solutions available to solve many problems posed by chronic illnesses. I myself had given up hope for many years that I’d ever ride again.

It wasn’t until my husband and I began discussing this type of bike that I realized it might be possible for me to ride again someday. When we went to the bike store and I tried out this bike, I couldn’t believe how comfortable it was. After a short ride on Saturday and two short rides yesterday, I am learning how to properly shift the gears and am thoroughly enjoying simply being able to ride again.

As I coasted down a hill yesterday, memories of riding a bike when I was younger came back to me. It felt good to get fresh air and exercise. I’m really excited about having a safe means for getting exercise. I just wanted to share this story here. When I picked the title for this post, I tried to pick something that would be seen by vulvodynia patients who, like I was, are searching for ways to ride a bike despite the pain of vulvodynia.

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

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May 9, 2011   18 Comments

Mourning Mother’s Day

Given that I have not been feeling well enough to write a new blog post and the fact that I always write a post regarding Mother’s Day, I decided to post something short with a link to something I wrote last May. (I have already noticed many visitors to Mother’s Day posts from years past). With 1 in 8 couples affected by infertility, odds are good that you know someone struggling with infertility (whether you know it or not). Insensitive remarks and judgmental comments often drive those struggling with infertility to keep their struggle private.

This Mother’s Day, please show compassion to the women – and men – around you who are childless (whether they are childless by choice or not). We live in a child-centric society and being childless can feel very isolating. There are all sorts of reasons that people are childless. The last thing childless people need is to be judged by others or condescended to. Sadly, the childless people I have interacted with tend to get heaping doses of both judgment and condescension. Some people’s comments aren’t intended to be malicious but they are hurtful nonetheless.

If you have a friend or loved one who is struggling with infertility and you don’t know what to say/do to be supportive, the best thing you can do is take cues from that person/couple. They may wish to talk about it and they may not. They may be happy to tell you what is helpful and what is not. They may wish not to discuss it at all. Everyone is different and one person’s process for dealing with loss may differ quite a bit from another’s. By asking your friend or loved one how you can help, you show them that you care. Bear in mind that they are most likely inundated with unsolicited advice. This is why taking cues from them is really important.

This is a difficult time of year for anyone who has suffered a loss that results in Mother’s Day bringing up painful memories. This is not limited to those experiencing infertility and/or pregnancy loss.

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

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May 6, 2011   5 Comments

Major Migraine Month

The best way to sum up the past month health-wise is:
My head hurt every day.

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.

Click for photo source.

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):

Click for photo source.

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.

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

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April 30, 2011   12 Comments

National Infertility Awareness Week 2011

I haven’t written a blog post in a couple of weeks because I have had a migraine for 3.5 weeks now and I have been offline the vast majority of the time.

However, I did want to mention that this is National Infertility Awareness Week 2011. Please click the logo below for more information from RESOLVE: The National Infertility Association:

Why not take the pledge today?

Infertility is a disease that affects 1 in 8 couples of childbearing age. Odds are good that you know people who are struggling with infertility (whether you are aware of it or not).

“Infertility is a disease that results in the abnormal functioning of the male or female reproductive system. Both the American Society for Reproductive Medicine (ASRM), World Health Organization (WHO) and the American College of Obstetricians and Gynecologists (ACOG) recognize infertility as a disease”. [Source: RESOLVE].

Please consider learning more about infertility. It is common for well-meaning people to make hurtful and insensitive remarks to people who are struggling with infertility. (Hopefully increased awareness will make this phenomenon less common).

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

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April 26, 2011   6 Comments

Endometriosis Awareness Month: Recap

While I had many ideas for additional topics to cover this month, time has flown by and my energy has been limited. I decided to do a recap of the Endometriosis Awareness Month 2011 posts for those who may have missed one or more of them. First we heard from Dr. Diane Neal and Endochick in a guest blog post called:

Dr. Diane Neal


Then I wrote this post about something I call “yellow-washing”:

Next I wrote this personal post regarding undiagnosed teenagers struggling with what may be endometriosis:

After that, I wrote about the importance of support here:

Following that, I talked about being sidetracked from Endometriosis Awareness Month by migraines:

Then, I wrote about the important topic of suicide prevention:

Finally, Jenn did a guest blog post about how chronic illnesses like endometriosis can affect one financially:

I would like to thank Diane, Endochick, and Jenn for taking the time and energy to write wonderful guest blog posts for Endometriosis Awareness Month. While I hoped to do more this month than I have, I have learned over the years that it isn’t wise to force my body beyond its limits. So, the many days this month when my body essentially told me, “no” when I asked it to do something, I didn’t force it. I listened to it because the consequences of not listening to one’s body can be pretty unpleasant.

I would like to thank everyone who has signed the petition and/or shared the link on social media:

Endometriosis Awareness Month may be drawing to a close but we collect signatures on that petition year-round. So, please continue to share that link on Facebook and Twitter. Just this month the petition gained 56 signatures. That’s not bad! Many who signed elected to use the optional field for comments. Reading through those comments, one cannot help but be moved and inspired to action. There is so much work to be done! Let’s keep getting the word out to people. Here is that link for the petition once again:


Thank you very much to everyone who has worked so hard and so passionately to spread the word about endometriosis, to foster awareness about it, and to take a close look at endometriosis organizations to ascertain whether they are advocating for patients as they claim. Taking the time to research organizations before supporting them (financially or otherwise) is worth the time and effort. Sadly there are organizations that purport to advocate for endometriosis patients but upon a bit of investigation, it becomes apparent that looks can be deceiving.

Thank you to everyone who is working to spread the facts about endometriosis and working to counter endometriosis misinformation.

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

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March 30, 2011   5 Comments

Endometriosis Awareness Month: Suicide Prevention

In the past, I have written many posts about the topic of suicide and about the frequency with which people search phrases like “endometriosis and suicide” before landing on my blog.

Endochick recently wrote this post: Why we need awareness #3.

While the three hour sampling of searches mentioned in that post did not include any about the topic of suicide, I know from talking with Endochick that her blog gets daily traffic on the topic, as does mine.

Worldwide Hotlines:
Just click…

International Association for Suicide Prevention

Since it is Endometriosis Awareness Month and multiple blogs get daily traffic on “endometriosis and suicide”, I decided that an important part of blogging for Endometriosis Awareness Month is to cover this topic.

In the United States:
Just click…

There is more information about suicide HERE, HERE, and HERE.

Here is the story of an endometriosis patient who died:

Finally, I wrote about suicide prevention in general HERE after taking an informative class on suicide alertness.

If you are having thoughts of suicide, I urge you to contact one of the hotlines listed above. Please click the graphic above that pertains to your geographical area.

For more information on creating endometriosis awareness, please click below. Awareness is vital and help is available for those having thoughts of suicide. Please help us spread awareness about this serious illness.

Thank you!


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

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March 14, 2011   4 Comments

Endometriosis Awareness Month: Migraine Detour

What do the woman pictured and I appear to have in common?

(1) We both have wrinkle-free, youthful skin.
(2) We are both wearing eye makeup.
(3) We are both feeling migraine pain.

If you guessed number 3, you win the prize. Unfortunately, I have no prizes to give out. So, hopefully you will be satisfied to have as your prize the knowledge that you guessed right. Did the blog post title give it away?

Hopefully tomorrow’s acupuncture session will expedite getting this migraine to pass so that I can get back to working on Endometriosis Awareness Month. In the meantime, please sign and share the endometriosis awareness petition (see right sidebar for link).

Thank you for your patience.
The skinny needles my acupuncturist uses.

P.S. For those wondering, my youthful skin took a hike awhile back and I don’t wear makeup. So, that leaves number 3 by process of elimination. While I cannot prove the woman pictured has a migraine, answer 3 is most logical due to process of elimination. Yes, I have insomnia that is making me punchy now. Thus the silly post.

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March 12, 2011   4 Comments