Thursday, October 15, 2015

Falling apart at the seams; Thanks EDS!

My body is really failing me, with widespread joint problems, in addition to everything else. It's really distressing when so much goes wrong all at once.

My feet are the most troublesome right now. I already have the custom insoles, and the podiatrist already took xrays. He said everything looks fine. I'm going to try a new podiatrist, but what can a new podiatrist really offer? I have a hard time describing the pain, as it is widespread. The insoles used to help so much. Maybe my feet are degenerating with the rest of my body, so I need a new pair of insoles after only a few years? But what if there is nothing to do for them? My apartment isn't wheelchair friendly. How will I care for myself, Wilma, my home, and make all the food? With so few steps I can take in a day, how will I get by? It feels pretty hopeless without new insoles that are somehow different.

My left hip has been subluxating a lot (it's a partial dislocation that resolves on its own, very common in EDS, but new for me). Mostly, but not always, it happens when I ride the bike. It is happening other times too, now. I can't keep exercising if it's stretching the joint out more each time. I'm working on finding a support belt or a brace that can help with this. I'm already doing the hip stabilizing exercises that I know. I may need to try compression shorts in combination with a trochanteric belt to hold the hip in place. I feel like there's an answer for this one. It's just hard to find. Because with my POTS, I start to go braindead after only a few days without biking. I absolutely have to find a solution to continue biking.

The other challenge is my right shoulder, which has started subluxating when I use the wheelchair. I've officially lost my independence in leaving the house due to all of these issues, which is hard to accept...again.

I have several decades left to go with this body. How will I make it through? I can't resort to daily pain meds yet. I already take so much medicine every day. My insides won't tolerate decades of daily pain medicine. And my digestion doesn't tolerate opioids anyway. Maybe medical marijuana will be an option one day. In Illinois, I think migraines and EDS are not approved for it, but Chiari is. So maybe I could try it. But it can be hard on POTS symptoms, like lowering BP and raising HR. And it's not without side effects of it's own. It's definitely something I'll consider, although I could never smoke it. Maybe an edible or an oil. Although I've heard it's all very expensive.

I'm having more trouble sleeping again, at least partially because my hips, shoulders, and knees are in pain, keeping me from sleeping. So, many days, I'm in a sleep-deprived haze.

Just for fun, my digestion has been worse again. I was once treated for SIBO, which seems to be flaring up again. But I was living in a different state at the time, and I don't have a local GI doctor. The treatment for SIBO tends to be a course of a certain antibiotic folllowed by probiotic treatment. I could at least try a new probiotic. But all of these treatments and braces cost money, which is rather short lately.

It's challenging thinking about scheduling more appointments when I'm having so much trouble getting around. And I don't have an EDS doctor, basically because there is no such thing. My geneticist that diagnosed me is in Baltimore. I guess there is a geneticist at Rush in Chicago worth seeing for EDS. I'm sure it will happen eventually. But I need to work on my feet first

It's so frustrating for my body to fail me like this. I feel so helpless, barely able to care for myself, much less run errands or keep the apartment tidy. I wish there were more I could do. I also hate that when all these issues crop up at once, I have to devote so much energy to my own problems. I end up feeling so self-absorbed and unhelpful to those around me. These stupid chronic illnesses really suck. Thanks for reading the update. Hoping for more positive news next time.

Friday, August 28, 2015

August 2015

We got a dog! Her name is Wilma, and she is a 10-year old Maltese. She is so sweet, easy to care for, and really a perfect companion for me!

I also had my first Botox treatment for chronic migraines a couple weeks ago. The first treatment isn't supposed to make a big difference in your migraines, and it hasn't.  What it has done is weakened my neck muscles, making it harder to hold my head up.  Then, all the other muscles that weren't paralyzed by the Botox are squeezing harder, causing a tension headache (that feels a whole lot like the early stages of a migraine.)  So, it's kinda hard to sort everything out at this point.  But I will go ahead and get the second Botox treatment in November as planned.  In the meantime, I've had to start wearing my beloved Aspen collar again.  It's only temporary though.  The effects of Botox last 10-12 weeks for most people.

Otherwise, I don't have much to report.  I'm taking the mast cell stabilizers, but not noticing a huge difference in anything yet.  My stamina has been okay-not awesome.  I've been frustrated with my level of consciousness some days.  That really comes in waves, like most everything else.

I have to get a new psychiatrist, due to a change in our insurance.  I'm hoping to find one that can help with my occasional sleep problems.  I'm terrified to sleep away from home ever, because I had so much trouble sleeping on our last trip.  And without sleep, all hope is lost.  It is so key to my functioning with POTS.  And a bad night's sleep also guarantees a migraine day.  Unfortunately, our new insurance is pretty bad, so it may be difficult to find a good doctor among the few that accept the insurance.

I think that's all the news to report.  Thanks for checking in!

Friday, June 19, 2015

June 2015

Okay.  I want to post tonight, because I'm feeling a bit hopeful about things lately.  I've had pretty much weekly doctor's appointments with various specialists, and some things are going well.


I have seen another new neurologist/migraine specialist.  And I like this one a lot better.  The biggest thing we changed at my first appointment is deciding to bypass the digestive system all together with my abortive treatment.  So, I'm using an injectable triptan and a nasal triptan. So far, so great!!!  It hasn't been long, but they seem to work so much better, faster, and more reliably, with less side effects.  If you can treat the migraine soon enough, it shouldn't drag on for so many days. I love both of these medications so far.

Still, if I'm triggered by the weather or a perfume, abortives seem to be much less effective.

In addition, the new neurologist is getting prior authorization from Blue Cross for me to have Botox treatment, which she does herself.  I'm definitely nervous about trying it, since both the positive and negative effects last about 3 months.  So, if I have an adverse reaction, it will last for 3 months.  But the prevention of migraines should be worth the risk, right?  I'll have to work through some anxiety for this one.

Separate from the migraines, I have been having some trouble with swallowing recently.  I've inhaled solids and liquids a few times.


This has been pretty good lately, for me.  As long as I maintain regular aerobic exercise, my symptoms are pretty easy to manage.  I also have a ton more energy the day after exercise, which is a huge motivator.  I have times with bad arrhythmias and low blood pressure.  But usually, the first 6 hours of my day, my POTS is pretty bad, but the following 6 hours of my day, my POTS is pretty good.  Not that I can stand in place very long.  But I can manage.

Allergy/Immunology-Mast Cells:

I saw my immunologist again today, and finally got a prescription for Gastrocrom.  I believe this doctor thinks I'm a bit stupid, and maybe anxious.  But he's willing to prescribe a mast cell stabilizer without clear-cut proof of the diagnosis.  So, I'm very grateful for him.  I haven't actually received this medication yet, so I can't yet report on the effectiveness.


Digestion is going really pretty well.  My diet has expanded a bit, and most days my symptoms are minimal.  I get flare-ups of pain and symptoms for no apparent reason, but most days are pretty good.

In case anyone is interested in what's been working for me, I follow a low fodmap diet (recommended for IBS), as well as a low fiber diet (recommended for Gastroparesis).  Gluten doesn't seem to be an issue for me, but I mostly avoid it anyway.  I also have to follow a low histamine diet, but that is for mast cell/allergy issues.

Currently, I'm eating these foods most days:

Oat-based cereal
Almond Milk
Rice Cakes
Peanut Butter
Cucumber - This is new, and I'm currently able to tolerate it raw and with skin!
Cottage cheese - This is new, too.  I do best with the Lactaid Cottage Cheese.  A great new source of protein for me!
Quinoa cooked in chicken stock
Green beans
Grapes - Also new!
Homemade muffins made with oat flour and blueberries

I'm really happy with this diet.  The variety is really nice!  I've also been able to get away with eating out several times now at certain restaurants.  I just have to order really carefully!


I've had to start using my wheelchair more often again, due to the severity of my foot pain.  The podiatrist doesn't think there's anything else to do for me.  So, I'm just managing.  Still so grateful I have these custom orthotics, because I'm absolutely worthless without them.  They just don't help enough anymore.  I just had to practice some acceptance on this one.  I mean, who really needs to walk around Target?  Using a wheelchair is an inconvenience, but not the end of the world.

I also developed really severe pain in my tailbone/sacrum area.  Luckily, I ordered a coccyx cushion from Amazon, which has mostly relieved this pain pretty quickly.

My neck is still generally painful, along with the rest of my spine.  The soft collar I usually wear is helpful though.  I still have to use the hot rice bag on my neck daily, as well as trigger point massage daily.  The muscles are tight as ever.


We had a wonderful trip to Boston last month!!  Of course, my activity was pretty limited.  But we had a great time with Chris and Kathleen.  :)   They really helped me to feel at home.  I only had one major migraine while there, due to lack of sleep the first night.  I was able to eat out 3 times!  It was a wonderful change of pace.

We also have some news.  I'm having to work through a lot of anxiety for this one.  But we may be adopting a dog soon!  I obviously love dogs, and I would love to have a companion during my husband's long work days.  Some days, I really question if I should consider taking on the responsibility for another life, when I can barely manage my own some of the time.  That's why we're meeting a low-energy senior dog, who is also quite small, hypoallergenic, and said to be very quiet.  I've been looking for this kind of dog for at least a year, and we're going to meet her tomorrow and see if she is a good fit!  Obviously, I'll be posting about her next time if we do adopt her.

My piano lessons have been going really great.  I love the 4 students I currently have, and I haven't had to cancel too often.  Some days, it is a huge struggle to get myself and the apartment ready.  And it's still really hard to decide if I'll be up to teaching when I'm having a bad migraine or a rough day. But I'm overall glad that I am teaching.

My stamina really has been better on my good days.  I don't need as much recharge time between activities.  But I can only maintain this if I make time to exercise.  I need to ride the recumbent bike for at least 30 minutes, at least twice a week.  I really start to drag if I don't make time for this.  My heart symptoms get worse, my brainfog is terrible, and my energy level gets really low.  It is great motivation to keep it up.  I also have to work on my core strength for spinal stability.  I've been doing quite well with exercise lately.  I just can't let myself get too busy or make too many social commitments, or I pay for it.

I am endlessly grateful for my family's support, as always.  I would not be in this position without them.  A position where I can actually feel hopeful again.

Friday, May 15, 2015

May 2015

Well, March had 27 headache days.  It was absolutely miserable.  April had 18 headache days.  (Of course, I still haven't gotten to the point where I have no head pain, but I'm not counting days with mild head pain.)  The first half of May has been a bit better, with 5 full-blown migraine days, but many days with moderate pain- usually a tension headache that feels like it could turn into a migraine any time.  I'm still being triggered by perfume and weather.  When a low pressure front comes through, a migraine is always triggered.  The weather migraines are intractable, so I just have to ride it out.  Then, still plenty of the migraines still have no identifiable cause, but may be related to my cervical spine or muscular issues.

I've been busy seeing doctors in the last month or so.  My feet became quite painful again, so I had to return to the podiatrist.  He added pads to my insoles, which actually made the problem much worse, and I could barely get around my apartment.  I'll be returning this week, hopefully to get new insoles made.  There's nothing obviously wrong with my feet, so he's calling it arthritis and maybe degenerative changes.  Probably another thing to blame on the EDS.

I need to go back to my allergy/immunology specialist to keep working on my mast cell issues.  I have developed a new sensitivity to sesame oil in the air.  The reaction is very dramatic, and very similar to my response to the hardwood floor lacquer.

I'm also seeing a new neurologist to work on my migraines.  She is board certified in headache medicine and vascular neurology.  So, she's definitely a good doctor to help me with this.  She's also endorsed by several headache foundations.  I've seen her once, so far.  We have a few things we've decided to try.  First, I'll be trying Nortriptyline as a preventive.  I've tried Amitriptyline before, but Nortriptyline may cause less side effects, so it's worth a try.  Next, we're looking into trying Botox again.  It's been quite a few years since I tried it.  I'm working with the doctor's office and my insurance company to get coverage approved for it.  So, I'm not sure exactly when I'll get it scheduled, but maybe within the next month.  Finally, the doctor is trying to arrange for me to try Transcranial Magnetic Stimulation.  (More information here:  It's a really interesting possibility!  But getting insurance to cover it may be interesting.  I would need to see a specialist in Chicago for that treatment.

Despite all of these challenges, we are planning a trip for memorial day weekend.  I'm super nervous about it.  Traveling is a big challenge, and with all of my sensitivities, it will be even harder.  But, we'll give it a try and hope for the best.  So excited to visit my brother and his wife in Boston!  Just nervous, too, of course.

Tuesday, March 17, 2015

Migraines are killing me

I was planning to write a blog post about my 2 year anniversary since surgery.  I'd like to evaluate what is better and what is worse.  But the pain I'm in is making it hard to think clearly or to even care.

The migraine is near-constant right now.  Just different pain levels on different days.  I'm looking into finding a new migraine specialist, since I don't have anyone right now.  I have already tried so many things, and fully exhausted the ideas of my last headache clinic, but I am feeling desperate again, so I have to try.

I'm also terrified to leave our home, or even have others come into our home, due to the risk of new migraines being triggered by fragrances.  This is particularly problematic at my dentist's office, which triggered a 6-day migraine last time I was in.  I'm not sure what to do about getting this cavity filled, when I'm scared to go into the office.

I'm feeling so depressed about this lately.  I found a neurologist at NorthShore that specializes in migraines and sleep.  Since my sleep has been problematic lately, as well, I'm trying to get up the nerve to call and make an appointment.

I'm just so scared that he will also say there's nothing he can do for me.

I'll try to write a better update soon.  Thanks for listening.

Saturday, February 21, 2015

Triggers, Flares

I've again been having trouble thinking clearly, so sorry if this isn't quite coherent and organized.

I have been put on a trial of mast cell stabilizers. One is Nasalcrom, which is available OTC. So far, at times I think it's helping a lot, other times not so much. I've also been put on a really strange version of oral Cromolyn Sodium. I'm not quite sure why, but I was given the nebulized form of Cromolyn, and told to take it orally. This form of the medication is quite a bit more expensive, and also a much lower dose than Gastrocrom. Hopefully next month, I'll be able to try the real thing. For now, I thought it might have been helping, but maybe not so much. I'll update more when I try the real thing.

I'm still having reactions to all kinds of things, the worst one still being perfume. I wear my mask whenever I need to, but it's not perfect. It doesn't form a perfect seal with my face, so plenty of perfume seeps in. I've had a bit more success tying a shirt around my face, but I do feel pretty strange doing that in public. Also, you can't very well wear a mask when eating. For me, perfume, air fresheners, and any kind of fragrance, trigger all kinds of symptoms. The worst is the migraines. Any perfume exposure can trigger a migraine that can last as long as five days. Other symptoms include itchy airway, difficulty breathing with a deep cough, and full-body itchiness. I have started getting nervous to leave the house, and just kind of dreading it.

The only good news is that whatever was triggering me inside the apartment is gone.  Our apartment is my safe space. The only thing that gets me at home is cooking smoke, which isn't a problem too often.

With so many illnesses and such a variety of symptoms, I've come to expect the flares.  Sometimes, I can even just accept it gracefully when a new problem, or an old problem, arises.  It has definitely helped me to think of myself as "riding the waves" of my illnesses. (This phrase is borrowed from a book about POTS called POTS - Together We Stand: Riding the Waves of Dysautonomia.) Somehow, knowing that the symptoms will wax and wane makes it easier to accept during the waxing times.

I've had a lot of trouble with migraines lately. Some of my most intense, prolonged, and intractable migraines have happened recently. I don't currently have a neurologist or pain management doctor, and am not really excited to look for one. At their worst, my migraines are all-encompassing.  The abortive medications don't work particularly well for me, and they often trigger rebound headaches if I take them more than two days in a row. But my migraines often go four or five days at a time. I've been missing a fair amount of work lately, and also some social time.

Some flares are things I can usually take in stride.  Like the lovely flare of night sweats and random neuropathic pain patches I've had lately.  I just keep a change of clothes by my bed for the night sweats, and use Lidoderm patches liberally for the neuropathic pain.  They're annoying, but mostly manageable.

I really hate insomnia flares, because they definitely make my migraines and my POTS symptoms worse.

Recently, I've had a flare of my GI symptoms, which is really disheartening. I really thought I had a hold on how to minimize these problems, but my system decided the current system wasn't working anymore. I've started reincorporating the low FODMAP diet in with the rest of my diet, with moderate success. It's just so frustrating that I had a reliable eating plan again, and now I've had to rework it. Luckily, I knew what to try. I mostly replaced my daily apple with cantaloupe (which is low FODMAP and low histamine), and cut out the garlic and onion. The rest of my diet has been able to stay the same. But knowing my system, I'll probably be able to add them back, in moderation, at some point.

It is really hard to explain what I can't eat to people, so I usually just try to say what I can eat.

Lately, my safe foods are:
Almond milk
Oat-based cereal
Rice-based cereal
Rice cakes with peanut butter
Mandarin oranges
Chicken broth
Cooked carrots
Cooked green beans
Sweet potato
Homemade bread, made from sorghum flour and pumpkin

That's the list for now. It seems like enough variety to me, but eating out is still tricky. And some days seem to be bad no matter what I eat. And some days I just wish I could eat a big salad followed by a milkshake! Oh well, it's simply not worth the symptoms most of the time. I do occasionally splurge when eating out, with mixed results.

I hope I covered everything. If not, I'll be posting again in a few weeks, as it will be the 2-year anniversary since my latest fusion surgery.