Tuesday, June 24, 2014

It's Always Something

I have so much to update- I've been writing this post for two months!  I just have trouble finding a time when I can seriously get my thoughts together and think clearly enough to write...or do almost anything else productive.  Brain fog is still a major issue.  I've heard that having Chiari malformation, cranio cervical instability, and basilar invagination, along with the major surgeries to correct them can cause symptoms of brain injury.  There is a great article about brain injury recovery here: http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html.  This article describes the strange set of cognitive deficits caused by brain injury.  I struggle so much with thinking clearly, and sometimes feel like I will never be myself again.  But I know in the past, my cognitive deficits have continued to improve at least two years after surgery.  I may never be able to multi-task well again.  But hopefully my cognition will improve with more time, and maybe I'll feel a bit more like my old self, and not some empty-headed dimwit.  So, if I don't seem like myself lately, this can help to explain it.

Besides that, my body has been keeping me busy with one challenge after another.  It does seem like I can never get a break.  Lately, the biggest issues have been migraines and foot trouble, with a little sleep trouble, GI trouble, and angry mast cells for good measure.

I've been dealing with another issue the last couple months, but I am finally over it.  I don't want to go into too much detail, but basically, over the years, I've been given a benzodiazepine to help with sleep.  Over time, my body became dependent on them.  So, I needed to get off of them, which can be really hard.  Being me, the withdrawal was harder than expected, especially for the low dose I had been taking.  It caused my poor dysfunctional autonomic nervous system to freak out even more.  Luckily, I think I am finally past this and not using any benzodiazepines, ever again.  I would suggest to anyone reading to avoid these types of drugs, if at all possible.  The dependence and withdrawal are just too serious.  These meds also cause rebound anxiety when they wear off.  There are other alternatives for sleep that work for most people, and there are other ways of coping with intense anxiety.  Just say no if you can, for your own sake!

I've been having a lot of trouble with my feet.  First, my left ankle started acting up.  It developed a bruise and swelling for no apparent reason, and was uncomfortable to walk on.  Since my Easy Spirit walking shoes were getting pretty old, I thought it was a lack of support.  Those walking shoes are the only thing that saved me last time my feet acted up, so I replaced them with an identical pair.  Unfortunately, my feet got worse and worse.  I developed the problem I had a couple years ago: metatarsalgia in my left ball of foot.  I dug out my old custom-fit orthotics, and they were just as painful to walk in now as they were three years ago when I got them.  I persisted with them, but my feet continued to get worse.  I developed intense pain across the soles of my feet.  Maybe plantar fasciitis, maybe some type of neuropathy.  I also wondered if my Raynaud's in my feet was making things worse, since my feet always felt so cold.  But even keeping my feet warm did not relieve the pain.  So, we went out to find a new pair of shoes.  Tried on tons of shoes.  Bought what seemed to be the most comfortable pair, and tried them out around the apartment a few days.  My feet still hurt or hurt worse.  So we returned the shoes and repeated, twice.  Finally, I settled on a pair, but my feet are still hypersensitive and painful.  I've also had ankle pain, so I've been wearing ankle braces and arch supports on both feet.  I also have insole pads in my shoes for extra support.  I've done stretches and massage, heat and ice.  Some things help a bit; some seem to make it worse.  Sometimes it's worse in the mornings, sometimes at night.  The foot pain still seems to move around and wax and wane.  Either way, my activity has been quite limited by my foot pain at times. I will probably go to a specialty shoe store to try to get better shoes sometime.  But we've had a whole lot of shoe shopping lately, so I'm putting it off a bit.

Migraines have sure been troublesome.  I was trying out a supplement called Migrelief for a couple of months, at the recommendation of my psychiatrist.  (I know that supplements are highly unregulated and frequently not effective, or even safe, but I failed all prescription migraine preventives.)  The Migrelief really seemed to be working at first, but eventually, it became clear that it wasn't.  At the beginning of this month, I developed an intractable migraine, combined with rebound migraines from taking the Maxalt too many days. You know it was bad, because I actually went to the urgent care clinic.  They gave me a shot of Toradol, but the migraine didn't abate.  So, I just had to wait it out without meds.  It was pretty intensely painful for quite a few days, but it finally did pass.  So, I began experimenting with another supplement called Butterbur (supposedly it is certified PA-free, so it should be safe).  So far, the Butterbur has been very helpful.  I just hope it keeps working.  I also began tracking the barometric pressure- and I do seem to get a migraine-like headache every time the pressure changes quickly.  But that type of migraine seems to go away without Maxalt, once the pressure stays stable for a while.  So, my headache has officially become a barometer.  Not much to do about this one, unless I want to move to a more temperate area.  I am considering finding a doctor that would try Botox again.  I had it done about 7 years ago, but I would be willing to try it again.

My mast cells really seem to flare up on their own a lot of the time.  Not much to do about that, except take more Benadryl.  And stick to the low histamine diet.  I know a lot of people have had questions about this "crazy diet" I'm following, or why I can't eat what everyone else is eating.  It makes a big difference if I follow it.  But it's not digestive symptoms.  I can digest a tomato just fine.  But it makes my overall reactivity higher.  I need to be able to tolerate exposure to air freshener in the hall or someone's cigarette smoke outside- things I can't avoid.  And the only way I can tolerate the unavoidable exposures is if I stick to a low histamine diet.  Histamine in food is a little complicated.  The biggest rules are: not aged, fermented, cured, or leftover foods. No spinach, tomatoes, eggplant, avocado, strawberries, raspberries, yeast, vinegar, soy sauce, cashews, or yogurt.  It is, of course, so much more complicated than this, but those are the biggest foods to avoid.  I'm actually eating plenty healthy still, so I'm not too worried about these foods being left out.  Of course, I would absolutely love to go crazy and eat a pizza, but it's just not good for me.

My digestion has mostly still been quite good.  I love that so many days, I have no digestive symptoms!!!  I'm still loving the Digestive Advantage: Intensive Bowel Support.  I just really have to stick to my diet.  When I stray from the diet, I frequently have trouble.  If I've had a good few days, I can usually go out for a scoop of ice cream without much trouble.  So that is my treat- and it's a pretty good one here in Wisconsin- delicious ice cream!  Where I get into trouble is when I change one of my daily meals, or I try to eat "healthier" by eating a salad.  I think I have finally learned my lesson about salad.  It seems really good for you, but it's not good for me.  A food isn't good for me if it makes me feel worse.  I have added in some cooked zucchini, which is really easy to digest!  Just need to stay away from salad!!  Those raw veggies are nothing but trouble.  And my favorite restaurant has been Sweet Tomatoes for years- you know, the giant salad bar restaurant?  Just another thing I have to avoid.

Shortness of breath from POTS really drives me crazy.  I can literally get short of breath from walking a few steps, from talking too much, or from eating a meal.  And then, I can ride the recumbent bike for 35 minutes in the evening, and still be able to talk at the same time!  It makes me seem so out of shape, but I know that's not it.  My body just only cooperates when it wants to.  I'm very glad though that my tachycardia is mostly under control these days.  It still starts racing frequently, but not as fast as it used to.  Also, my resting heart rate has been quite normal, as opposed to the inappropriate sinus tachycardia I had at rest for months after surgery.  Recovery keeps plugging along, slow as it may be.

Sleep has been a bit of an issue.  I'm still waking up frequently.  Sometimes, it's nightmares, sometimes I wake up in a puddle of sweat.  Other times I wake up with angry mast cells, so my eyes are swollen and puffy, and my whole body itches.  Still other times, I have really scary neurological symptoms upon waking.  These symptoms seem to be seizure-like activity.

If you're still reading, I am amazed.  But I think that if I share everything going on here in my blog, then I don't feel the need to talk and talk about it in real life.  I just assume that if people want to know how I'm really doing, they can read it here.  I don't want to whine and complain and bore people with these issues in real life.

Ready for the good news?  My overall daily time that I am functional has been really good recently!  It requires a stimulant to wake my brain up, but my body has been cooperating.  This past week has been the most active one in quite a while.  I am trying to be very cautious in my optimism.  Knowing that my condition constantly ebbs and flows, I have to protect myself.  For now, I'm trying to just enjoy being able to get more done in a day, without trying to extrapolate what this means for the rest of my life.

In other news, we're planning for our move, which is in one month!  We'll be moving back to the Chicago suburbs next month.  Packing everything up, moving, and unpacking is a real challenge.  I have to be very careful to pace myself, and never do too much at once, since I have caused myself a major setback in this situation in the past.

We are also considering getting a puppy again.  I'm so hesitant, because I'm afraid I won't be able to take care of it by myself, especially after the trouble we had with our little Charlie last year.  My heart wouldn't be able to handle falling in love with another dog, only to have to say goodbye.  But you can never really know if a dog will end up being high-maintenance, if they'll let me get the sleep I need, or if they'll really be hypoallergenic.  So, I guess I'm still pretty undecided on this one.

I'd like to say thank goodness for the affordable care act.  We have a two month break between my husband's current position and his next position, meaning two months without employer health insurance.  The cobra plan would have cost $4000 for the two month gap.  On the health insurance marketplace, it looks like we'll pay about $300 each month.  Of course, the coverage is not a plan we'd actually want to use, because it has an extremely high deductible and only 50% coinsurance.  But that's not the point.  I just want to have continuous coverage.  I don't actually plan on using it during those two months.  It's still very nice to know it will be there if needed.

Here's an article about living with chronic illness that I really enjoyed reading.  I found everything in it applied to me.  http://www.psychologytoday.com/blog/turning-straw-gold/201404/how-chronic-pain-and-illness-fan-the-flames-uncertainty   I really love the message.  I have to cope with immense uncertainty in life, which can cause anxiety and depression if you don't learn to accept it.  The uncertainty of living with chronic illness is so widespread.  It makes it very hard to plan your life.

Lastly, I'd like to say a huge thank you again to the caregivers in my life, the primary one right now being my husband, Gustavo.  And every day before my marriage, my primary caregiver was my mom.  My gosh, what would we do without our caregivers???  I certainly wouldn't be here today without them.  I don't know how I would get the care I need or survive day-to-day challenges without them.  I also would have no idea how to cope with the feelings of loss, disappointment, uncertainty, hopelessness, and worthlessness, without them.  Not to mention, I could not support myself without them.  I know of plenty of people from my support groups that do not have the kind of support that I have in life.  I am so grateful that I have people that love and care for me every day.  Here's an article about how to care for your caregiver: http://www.psychologytoday.com/blog/turning-straw-gold/201405/how-help-your-caregiver

Okay, since you stuck with me all of this time, here's some photos of my mom's new puppy, Lexie!  I love that little girl!

Baby Lexie!
Lexie and Dexter

Lexie's sweet little face!!!