Pre-holiday check-in

I'm just posting a quick update before the crazy holiday week, as I realize I don't have any "days off" coming up for a bit.

November was a pretty good month for me. The horrible migraines of October finally calmed down, due mostly to the barometric pressure staying quite stable. We moved into our new condo. There was nothing to irritate my system, so my mast cells finally calmed down.

I saw the local immunologist for mast cell testing. When I had the testing done (a 24-hour urine collection), my mast cells were quite stable. Not surprisingly, my methylhistamine level was normal during that testing. More testing will need to be done at some point, but I'm not sure if this doctor will be able to help me. He did note the presence of eosophinils in my nasal passages, but thought it was not necessarily a sign of mast cell activity. I feel a bit stalled right now, not sure what to try next. I think I will have to ask him for a trial of a mast cell stabilizer sometime.

I also started teaching a few piano students in November. I'm definitely working at my maximum right now. I feel overwhelmed at times.

Especially due to some new problems in the last couple weeks. I started having trouble with sleep again, for no apparent reason. I'm also having a lot of trouble getting my joints comfortable while at rest. My hips, and especially knees, are quite painful, especially at rest.

Then, just in the last couple days, my mast cells have been acting up again. There seems to be some tiny amount of smoke seeping into our apartment, which is triggering my mast cells. (I say seems to be, because the scent is so very faint, I'm not sure anyone else can detect it.) I get headaches, pounding and racing heart, scratchy and burning throat, deep cough, and some difficulty breathing. For now, I'm trying to manage with the door wide open and the fans blowing. It helps with the apparent smoke, but boy is it cold in here!! My poor Raynaud's fingers and toes are so painful in the cold, along with my arthritic joints. We may need to get an air purifier next.

It really is always something with me. I'm still mostly looking forward to the holidays. They sure bring their own challenges. I need to continue to follow my diet pretty well, get enough rest, and get regular exercise. It will be difficult with holiday plans, but I'll do my best.

Oh yeah- I also figured out that I'm currently intolerant of corn and corn products. Just another thing to add to my avoid list.

I hope everyone has a happy holiday!

Fall 2014

Plenty going on here with my health, as usual.  I feel like my whole life is constant problem solving. I devote most of my time and energy to solving all of these problems that come up.  And the problems are related to my most basic levels of functioning: eating, sleeping, staying conscious, and staying mobile.  All of my strategizing, short-term, and long-term planning, is basically related to my health. It is really annoying to devote so much of my energy to managing my health.  I feel so self-centered.

First, my foot pain flared up again.  Luckily, I thought to get out my old custom orthotics.  I never was able to get them to work for me when I first got them.  But, for some reason, I thought they would be worth a try.  And they really seem to be helping!  I'm wearing my one pair of shoes I own with my one pair of custom orthotics almost all of the time now.  My feet still get plenty sore if I walk too much, and some days I'm still limping a bit.  But it really is more of an annoyance right now.  I hope I can make this last for a while.  I wonder how long a pair of custom orthotics lasts until you need a new set.

Another issue has been my GI symptoms flaring up again, particularly severe bloating.  I've tried a few things to help.  I tried a different probiotic, but I think it actually made things worse.  So I've switched back to my usual probiotic.  I have gone back on a gluten free diet.  It involves even more time spent on food preparation, following a generally gluten free, gum free, dairy free, low histamine, low fat, low fiber diet.  Low histamine for the mast cell issues.  Low fat/low fiber for gastroparesis, although I'm not too strict on this one.  And generally following the rule of small snacks throughout the day, with no full meals ever, as they slow down my digestion and divert blood to my gut. Believe me, it is not an exciting diet.  And it certainly isn't helping enough, but it's the best I know how to do for myself.  The low histamine diet requires that essentially everything is made fresh, so I spend a lot of time and energy on food preparation.  And my system's need to eat little snacks all day means that I always have to have food with me.  If I don't eat for more than a few hours, I get really headachy and weak.  Probably a bit hypoglycemic.

I've also continued to have trouble sleeping at times, which makes everything worse, especially my POTS and my migraines.  The main things interfering with my sleep lately are: troublesome joints, mast cell reactions, and night sweats.  Actually, the night sweats seem to happen when I actually get some deep sleep, so they're more of an annoyance.  The mast cell reactions have mostly been when I've been to our toxic apartment for a bit. Also when I've been exposed to any other strong fragrances. But they also seem to happen inexplicably.  Liquid Benadryl helps with these reactions, but only a bit.  Also, I'm having some amount of reaction every night, because I wake up most mornings with swollen eyelids and lips.  So not sexy.  The joints giving me trouble have been my hips and my shoulders.  They're my most hypermobile joints, along with my spine.  I got a memory foam mattress pad to help with that.  (See what I mean about constant problem solving???)

After September being a light migraine month (about 10 days with full-blown migraines), October has been a terrible migraine month (more than half the days so far).  I did get a prescription for Imitrex injections, which I tried once so far.  Since Maxalt takes about 6 hours to work in my system (although it is supposed to be much faster), I was pleasantly surprised when the injection took about 40 minutes to greatly reduce the pain.  I can only get 6 injections a month, so I'll have to use them wisely.  It's probably also not safe to take too many more a month.  The fact that I have classic migraines, take Triptans for them, and am on birth control pills puts me at an increased risk for stroke.  I'm not sure what I can do about that, as I depend on continuous birth control to manage PMDD.  It's not pretty without it.

I've also had some days lately with very low blood pressure, lower than I ever remember having:75/45 at times.  And nothing seems to help on those days.  I'm still wearing my compression and taking Midodrine to help with this, but it can only do so much.  I've been told I need to head to the emergency room on these days, especially with the burning chest and air hunger.  But I haven't gone yet, and hope to continue to avoid it.  The only way they could help is with IV fluids, and maybe Potassium or Magnesium infusions.  But I'm still trying to avoid it.  I can supplement electrolytes myself, and I don't really have a POTS doctor right now, so I don't have a standing order for fluids/electrolytes.  That's something I could think about getting, because it would be helpful on very bad days.

Next, I've been having the usual trouble with brain fog, especially difficulties with memory, attention, and focus.  Attention is a newer problem for me.  I am having so much trouble focusing on even basic things.  I have a lot of trouble following conversations, and frequently have to ask people to repeat things over and over.  I zone out way too easily.  I can only hear one voice at a time.  If there are multiple voices, I probably won't be able to understand any of them.  And I seriously have to rewind sitcoms over and over again in order to follow the plot.  It makes me feel like a complete idiot.  The only thing that really helps is a stimulant, but one doctor is worried about addiction, and the other is worried about cardiac complications.  So, I don't have a current prescription for the stimulant.

I always have people wondering why I am completely non-functional in the early part of the day. The best way I have to explain it is related to hypovolemia, or low blood volume.  I do have documented low blood volume, perhaps 80% of an average person's blood volume.  This is the main reason why I have to load up with salt and fluids all day every day.  In fact, I drink 10 oz. of water and take one salt tablet every hour I'm awake.  Yep.  Every hour on the hour, I take another salt tablet.  By the sixth hour of the day, I usually have bumped up my blood volume enough to get moving, or at least get dressed.  Up until then, I'm basically on auto-pilot.  I follow my usual routine of drinking, pills, food preparation, eating, and resting for those first hours.  I cannot hold a decent conversation or go out of the house yet.  I seriously feel like death most mornings when I wake up, and have to drag myself out of bed with all my strength.  It is beyond frustrating to wake up so depleted, but it is my norm.  Perhaps, one day I would get a port put in and get IV fluids.  But the port is only a short-term solution anyway.  Or maybe vitamin B12 supplements could boost my blood volume a bit.

So, the first five to six hours I'm awake are a pretty huge problem for me.  That's the reason why I frequently don't answer the phone during those hours.  It's also why I always have to turn down invitations at those times.  Even if I really want to be somewhere, it frequently just won't be possible until the later part of the day (really, about 4:00 in the afternoon is the earliest I can get anywhere). Unfortunately, even if I get an invitation that is later in the day, I can't know for sure I'll be able to show up until about an hour before.  Some days, I've had to turn down invitations at the last minute, because it's a migraine day, and the migraine just won't let up.  Sometimes, I've had to say no due to scary-low blood pressure, with associated reduced consciousness or syncope.  But unless my symptoms are severe, I will usually do my best to go ahead anyway.  I really hate to disappoint people so often, and I'm not sure they always understand the position I'm in that is forcing me to cancel plans. Of course, if they read my ridiculously long blog entries, then they probably do understand.

With this whole apartment mess (having severe reactions to the varnish fumes, causing us to move again in a week!), I've become even more sensitized to fragrances and fumes of any kind.  SO freaking sensitive these days.  Like, ridiculous.  I've also found more foods (high histamine foods) that trigger my allergic symptoms.  I've finally given in and purchased a mask.  Not just any mask, a super fashionable Vogmask.  But no.  I do look ridiculous wearing a mask, and have so far only worn it privately.  I haven't found the courage to wear it in public yet.  We'll see if it becomes necessary. However, I have pretty good news in this area:  I have finally made an appointment with a local doctor that supposedly specializes in mast cells.  It will be in mid-November.  I'm pretty nervous. We'll see what kind of testing he wants.  Preferably, he would just prescribe a mast cell stabilizer to see if it helps.  Good Lord, would I love to have my mast cells stabilized.  I'd love to know how many of my symptoms could be associated with unstable mast cells.  Apparently, it can cause: migraines, bloating, brain fog, low blood pressure, aches and pains, fatigue, insomnia, etc. etc. etc.  Seriously, it could be responsible for a lot of my troubles.  But maybe it's just responsible for the itchy allergy stuff.  Even that would be worth it.  But if it could help more, of course that would be amazing.

Finally, another thank you to my awesome family.  I know my "thank-you's" are just words, and are simply inadequate at times.  My husband is at a new job with longer hours, and he's been managing the whole mess with the apartment, the move, the finances, all while living alone in the toxic apartment.  He's been very tolerant and done a ton of work to make everything happen.  He's also dealt with a ton of stress trying to sort it all out.  Thank goodness, we will be in a new home with this all behind us in a few weeks!  He is an amazing and supportive man, and I am so grateful.

And for three months now, I've been living again with my mom and stepdad.  Thankfully, they have made my life as comfortable as possible in this time, and taken care of me as needed.  I'm not really easy to live with, getting sick from every fragrance around, and frequently hiding from all light and sound.  But I am very, very lucky to have them.  I'm also really lucky to have these two amazing puppies here.  Two sweet little companions to keep me company!  Their little wagging tails bring me so much joy!!!

Here's Lexie and Dexter:

Ridiculously cute and sweet dogs! I will sure miss them when I move out.

Thanks again for reading and caring.

Moving Trouble and More

It's been a pretty rough and emotional two months. Plenty going on. My body doesn't do so well with transitions and changes in routine. So a big move was certainly a challenge. To say the least, the move has not gone as planned! Our new apartment had been freshly renovated when we moved in...freshly painted walls, newly installed appliances, and brand new hard wood floors throughout. Sounds great, right? Well, moving day came. I got to our apartment around 5:00 that day. It was a warm day, and though the apartment had air conditioning, it was still about 87 degrees inside. In addition, the fumes from the paint and floor varnish were overpowering. My body's reaction was dramatic, to say the least. I quickly became overheated and overwhelmed. I lost consciousness multiple times, reportedly stopped breathing several times, and had full body convulsions. I had to be carried out of the building.

That was July 26. Six weeks later, I'm still not living in our apartment. My incredible husband has spent all of this time trying to rid the apartment of fumes. We have tried everything you can think of. He's been living in a windtunnel with fans blowing. He lived with cut up onions spread around the apartment to absorb the fumes. Same for kitty litter. He scrubbed the floors with vinegar, vinegar and baking soda, and floor cleaner- multiple times. This involved moving all the furniture out of the way- multiple times. He sprayed vinegar and baking soda on every surface we own. After all that, I can spend about 20 minutes there before a migraine kicks in. And of course, for me, a migraine is a multi-day event. So I'm pretty scared of the place now. I've also had symptoms of mast cell activation, like early stage anaphylaxis, after being there too long. At this point, I'm not really seeing any improvement. We are finally at our wit's end and looking into breaking our lease and moving to a new apartment. We are seeking legal aid to get out of our lease. The place we are interested in moving to will be available by November 1, so we will still be living separately for a while (I'm staying at my mom's house for now.)

It's been a challenging time for us as a couple, not being able to live together or have a place that is ours. It's certainly been challenging for me, feeling like my illnesses are causing everyone so much grief - even more so than usual.

Of course, this has not been the only trouble I've been having, because I don't know how to only have one problem at a time!

I did a trial of Amitriptyline for migraine prevention. I took it for eight days at the lowest dose. Just to be interesting, I had a unusual, but not unheard of, side effect. I developed pretty severe insomnia. Usually, it is a sedating medication, but not for me! Even with extra doses of my night medications, I had very restless nights. The lack of sleep made me incredibly sick. So, so sick. My POTS was made 100 times worse, and I developed Inappropriate Sinus Tachycardia again. My heart rate was about 110 bpm at rest, instead of my usual 68 bpm. As if that weren't enough, I developed an infection during this time. The usual low grade fever and cold symptoms kicked in hard. And just to keep things interesting, I got trapped in a migraine cycle, too. This one lasted five days.  Technically, it was three different migraines. After three days on Maxalt, I couldn't take anything as an abortive for the last two days (to avoid rebound migraines), so I just had to endure it. I also had a day where I couldn't stay conscious for most of the day. I've had to take my Midodrine and wear my compression hose again, just to stay conscious.

I'm only a few days out of that hellish time. I discontinued Amitriptyline (which evidently did NOT decrease my migraines). Many of my problems resolved with a good night's sleep. The Inappropriate Sinus Tachycardia went away overnight! What a relief. Unfortunately, the difficult time has set me back on my conditioning, so my POTS is a bit worse now. I'm working to get back to where I want to be. My conditioning also got worse from not being near my recumbent bike, since it's in the toxic apartment. We just got it moved back to my mom's house, so I can get back to daily exercise.

With my POTS worse again, I've had some trouble with the "Wall of Pain" again. That's what I call it when I'm going along, and all of a sudden, I hit a wall. I have to lie down and not move until the intense full-body pain, and frequently nausea, pass. I'm pretty sure this is a POTS symptom for me, as the Midodrine and compression hose seem to help.

I'm getting very frustrated by my "chemical sensitivities." Obviously the new apartment trouble. But also just fragrances whenever I leave the house. I went to the dentist. There was a scented candle lit. I had to take 2 Benadryl and hide in the bathroom while they put the candle out and blew a fan around. It never occurred to me to call ahead and ask for no fragrances to be used that day. I guess that's what I need to do, but I feel like I'm being so difficult!! I've even had this problem when visiting people's houses. I feel like, who am I to tell them not to use perfumes in their own home? I just don't want to cause people trouble like that. I'm also just really passive, and I don't know how to assert my needs. But I obviously need to get better at this if I want to be able to go anywhere. I know I could also get a mask. Maybe it would help a lot, but I'm not ready to do it yet. You know? My symptoms from fragrances are itchy eyes, nose, ears, and throat, which progresses to swelling in the throat and a deep cough with prolonged exposure.

One other thing I've noticed is that ever since my last surgery (18 months ago), I've had serious trouble lying flat on my back. This part will sound strange. At first, I only noticed it during sleep. If I sleep on my back, I have this intense dream that I can't wake up from. And the dreams always involve paralysis. I can usually avoid this by putting a fluffy pillow behind my back. The thing is, I seem to have this problem when I'm awake, but lying flat on my back, too. Frequently, for the cerebral hypoxia, I try to lie flat with my legs elevated. But I'm pretty sure it is actually making me worse now, because I get in this really weird state where I can barely move or respond. Turning on my side seems to help. It seems that this problem is from my new fusion, perhaps being fused from skull to C2, but no longer down to C4 anymore?

And no, I still haven't gotten follow-up scans or an appointment. How long do you think I can put it off? The expense is just not manageable right now. And did I mention, I will have four different health insurance plans this year? So much fun!

I actually still have other topics on my list to talk about, but this is probably enough for one day.

Thanks for reading my continuing saga. And I know I should stop apologizing so much, but I'm sorry for being so much trouble!

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!!!

Catching Up

It's been a rough few months.  In so many ways.  In late January, my grandma was diagnosed with stage 4 cancer.  She passed away six weeks later.  I’m very grateful that I was able to visit her many times.  I miss her so much.  But I am so grateful that I had her in my life for the last 30 years.  She was very special to very many people, and will be dearly missed.

Then, last week, it became clear to us that our little dog, Charlie, was just too much for anyone in my family to handle.  He is a very high energy dog, and at times he is destructive, even aggressive.  It was such a difficult decision, but we drove him back to the farm where we got him last week.  He is so sweet and loving much of the time, so it was really hard to say goodbye.  He looked so sad and scared when we left him.  It is really heart-breaking.  I've sent an email to the breeder to see how he's adjusting to life on the farm.

So, many tears have been and continue to be shed.

My health has continued to be challenging.  It has been just over a year since my last fusion revision.

Migraines:  My migraines are happening between 10 and 15 days each month.  They knock me out for the whole day.  Treatment will be continued management with Maxalt, ice, and heat.  The preventives really haven't been helpful or tolerable for me.

Mast Cells:  My mast cells calmed down for a while, but are acting up again this week.  Skin crawling and itching, bumpy rash on face and back, swollen eyelids and lips, itchy eyes, nose and throat.  Also deep pain and intense fatigue may be attributed to mast cells.  Treatment for now is managing with allergy medications, since there is no official diagnosis.

Consciousness and cognitive deficits:  These are still a daily battle for me.  I struggle to maintain consciousness many days, and I have so much trouble thinking clearly.  I have had some recent success with low-dose Ritalin, which gives me 2-3 hours of relative clarity.  Unfortunately, I usually have a crash as the medicine wears off.  My energy drops off quickly, and I have pain all over, along with waves of nausea.  This happens after any activity, really.

Muscle spasms:  My neck and upper back muscles are still very angry.  They require nearly daily massage and muscle relaxants.  Even with these measures, I have a constant tension headache that ranges from a 4-8 on the 10 point pain scale.  

Digestion:  Definitely improved.  I have to have small portions of easily digested foods throughout the day.  I also have to take a daily probiotic capsule.  (I use Digestive Advantage Intensive Bowel Support-from Amazon).  I still have some bad days, but it is so much better!

My overall pain level hasn't been lower than a 4 for a while now.  Frequently my body just hurts so much, all I can do is lay still and try to distract myself.

I'm sure there are many things I haven't mentioned, but it really is hard to think clearly, and is taking all of my energy and focus to get this out.  I'm definitely living in a painful haze most of the time.  But I'm in a place of emotional acceptance right now.  I'm not fighting it.  Just getting through each day as best as I can, with no plans to seek further treatment for anything in the near future.  I am very grateful every day to have a family that supports me through this difficult life.  I am very much looking forward to moving back to Illinois this summer, where I will be able to see family much more frequently, without the hassle of a long drive and packing bags.

I'll leave you with some photos of Grandma and Charlie.