Wednesday, October 22, 2014

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.