Summer

Blog moved to summerplum.com

Hey y’all!

Due to some exciting (for me) upcoming changes in blogging plans and to help keep my general sanity straight, I’ve moved everything together from this blog & Summer Says over to SummerPlum.com.

So, if you are a subscriber/follower of this here site, I would suggest you click on over to there, follow or add the new site to your feeds, and then undo your connection to this one.

This will remain up for a bit, but all comments, links, and such, are moved over to the new site, so in a couple weeks, I’ll be closing this blog down, so as not to mess with the Google-fu.

I’ve posted an updated and intro, plus have some fun stuff planned for the new site. I hope you’ll join me!

The Social Effects of Allergies

My friend J wrote a good post about going gluten-free and how it effects social interactions. She asked me in advance for some thoughts and I couldn’t come up with anything short, so you get a blog post instead.

She recently joined me in my caffeine allergy (the allergy I honestly struggle with the most – chocolate is my comfort drug of choice), but as many of you know, my allergy list is much longer then rye & caffeine. Last Wednesday all the legumes, not just soy & peanuts, got pulled and I am continuing to lose weight (which is a whole other post). As you probably imagine, this effects my social interactions immensely.

People socialize around food and drinks. And being unable to partake shakes the foundations of human connection, you become “other” to people, and it’s weird. I can’t be in breathing distance of wine without my inhaler so happy hours and “let’s grab a drink” have left the lexicon of my life.

My roommate, bless his heart, waits for me to leave the house to make certain food stuffs, and I wake with concern to scents of onion or nuts in the air. We actually have a sign in the kitchen that was actively up-kept during my first few months living here that says “days since fatal attempt.” We do our best to make light of, and keep track of, these incidents. It’s important.

Just keeping track

It’s a good thing I am a good cook, or I’d be in sore trouble over meals. In the fall, when I started the elimination diet, it took me over six weeks to perfect a chicken stock that didn’t have celery, onions or carrots in it. It is doable, just challenging.

There are two restaurants in Charlotte where I believe it is relatively safe for me to eat. I only get coffee from the small, local coffee shops – which is not new, but I never, ever contemplate even the small local chain anymore – where they wash the pitchers and steam my goat milk. And even these place I take a promethazine or two Benadryl, just in case of cross contamination and can feel safe breathing the air.

Dinner at Pinky’s Westside Grill

Eating in public is sort of like playing a really weird game of Russian Roulette, only food is the gun and all meals start with an overview of my emergency-allergy plan. We, thankfully, haven’t needed it yet, but that doesn’t stop the nervous glances from those who feel they’d be responsible for saving my life in case I start going into anaphylaxis.

anaphylaxis preparation for pear tasting

I never go out to eat alone. That’s just looking for a chance to die. I’m good with my DNR but I am not eager to risk cosying up with it if unnecessary. I, frankly, don’t trust a server to be close by and understand my “help me” waving as “call 911 and stab me with the thing in my bag!”

After meeting a friend for coffee in February, I ended up with a massive migraine and a couple blackouts, leading to a stellar concussion (those things take FOREVER to recover from) and a re-broken front tooth; super sexy. Thereafter, I got gloves, then a filter mask, to wear out. These have led to a number of interesting and awkward conversations.

safety measures so I can leave the house

What all this tends to mean is that I cook almost meals at home from whole, raw ingredients. I’m lucky I was a good cook before all this started, I am grateful for that. My years as a tea blender means I’ve developed a good palate which has been a godsend as more and more has been removed from my diet and I’ve been able to find new interesting combinations.

Thankfully, Instagram has made sharing my food images easy & I find friends are eager to come over for dinner when I’m going to be manning the stove after seeing tasty images online. However, it means a very limited number of safe things can be brought in the house, so without specific directions and labels, short of specific directions, I just supply foodstuffs.

I miss out at events – I can’t have drinks or snacks, and even if get to them first and nothings been cross contaminated yet, I can’t go back for seconds. I drink a lot of water during the few events I make it to.

beautiful food, none of it safe for me

Happy hours and dinners out tend to simply not happen because I don’t want to be a hassle and I am nervous about seeming rude or holding folks up when being out. Those who don’t think it’s so bad still invite me out to the few places I can go, which I relish. I don’t get out of the house as much as I used to – mostly because of my allergies.

And since I’ve gone gluten free no one else cooks for me unless I’m out. The few convenience foods I have found, despite being insanely expensive, are worth their weight in gold because it means I don’t have to do all the cooking The sole safe pizza I can eat is seriously my go-to easy food when I have the $14 to buy one and no enough energy left to make anything.

How do you find your food limitations effect your social life? Do you go out less? Do you cook more? How do those around you handle your allergies and intolerances?

The Shadows Shift

The shadows are shifting, though not lifting.

I still have days lost in total darkness and pain, dousing myself with ice and pills in a semi-vain attempt to ward off these things that are dragging me under.

Icepack nap

Last Tuesday I slept for nearly 27 hours straight with brief waking moments to medicate, change ice packs and shove a nutrition bar in my mouth so the hypoglycemia did not cause me to pass out, not just sleep. Saturday afternoon followed a similar vain, where when I woke at two my roommate said, “I was coming soon to make sure you hadn’t died.” These comments are always made in a tone of half jest.

In the weeks that have passed since my last blog post much, and little, and has changed.

I am now a cyborg.

My shoulder does not require surgery, yet, at least. There is bursitis and a small tear in one of the tendons. I will do physical therapy at home, until I can get medical coverage of some kind that will cover it at the office, and then I will go in. I received my first cortisone shot Tuesday morning, which left me wickedly ill and my right arm mostly useless for the first couple hours. We will continue follow up, and cortisone, as needed. I also got another knee brace and I’m to buy, and actually wear much to my personal displeasure, shoes that will support my ankle. My thumb/wrist braces and I live in a daily battle, and when they become to painful, I take them off until I can bear to wear them again, which the doctor approves as she sees no better solution.

Additionally, the reason I was back in Dr. Rissmiller, my physiatrist’s, office Tuesday morning rather then my regularly planned follow up, was because Saturday night during my second migraine o’hell (which I dub the ones that lay me out for 20 plus hours) I managed to dislocate my right hip, completely, in my sleep, which woke me in excruciating pain 4:30am. As a child my knees used to just give out as my knee cap slid to the side, or my ankles would roll right under me, and I have subluxed more joints then I can count and dislocated a rib or two and my clavicle at least twice, if not three times, but fully dislocating a ball-and-socket joint is a special kind of hell.

I give my body credit, every time I think I understand my pain limits, it finds new, awful ways to show me who’s who’s bitch.

So, I have to do physical therapy for that too, which means I need to hunt down the latex-free Therabands. Once I have coverage, either through Physicians Reach Out (my interview with them is June 4th) or something else (???) then I’ll be doing physical therapy for both within the bounds of my EDS & Fibro. I am so not excited about this. What I really need is a membership to the local Y that has a heated pool, so I can do water PT again. That has helped me the most in the past.

I follow up with her in two months, assuming my body remains semi-stable.

(This blog post was interrupted by a six hour enforced ice pack nap thanks to increased migraine pain.)

Last week I met Dr. Green, a sleep specialist in my allergy & asthma specialists office. We had a lovely chat about how he couldn’t help me. After reviewing my extensive medical file – as I go to only CMC doctors & facilities to keep everything in my EMR (except for my geneticist and that will likely change soon too) – he decided I need to do my best to stick to good sleep hygiene (which I do) and that a sleep study would do us no good as I am too skinny for the most common cause of sleep apnea (obesity), and there are no structural issues (we have lots of CTs & MRIs of my skull & sinuses), and since what’s waking me up isn’t sleep pattern issues but, surprise surprise, pain so I won’t sleep better until we treat the pain.

Then, this past Wednesday, I finally saw the new neurologist for my headaches. Dr. Braver’s office was behind about an hour, but honestly, after a three month wait, I’m not opposed to another hour on the table. We discussed my extensive medical history, which she seemed to find a bit overwhelming (which I can’t really blame her for, I find it overwhelming many days) and then asked about all the things we’d tried while we waited on my appointment with her. She, unsurprisingly, asked all the questions I expected: why haven’t they increased your Topamax? have they tried an appetite stimulant? how long have you had a chronic headache? have you tried the tricyclics? have you tried Imitrex? have you tried Botox before? do you have private insurance?

Being almost 5’7″ and under 110 lbs is not sexy.

So I told her I’d been on Elavil the year before, which had made me gain weight (which had been awesome until I wasn’t helping my sleep anymore and I was creeping well past my ideal weight) and the had to switch off it to try Savella and Zanaflex, that now I was on Celexa but really wanted off it, so was happy to go back on the Elavil not only because it would help my nerve pain (which is vengefully returning off the Lyrica, which I traded in for the Topamax and will not give up as it has returned my hand use 60-70%) but might help counter balance the weight issues and then we could possibly up the Topamax dosage (which she said was low for a chronic migraine treatment). And that we had tried Imitrex, but I didn’t remember the dosage, but it had been useless thus far (she looked and said it was because the dose was too low at 25mg, and upped me to 50mg for now, with room to move to 100mg). But that until I put weight on, since I’m currently 107 lbs, I can’t risk upping the Topamax dosage until we make progress on the weight but that I’d really love to do that.

She also asked if I suffered from depression or anxiety, to which I responded yes, and my psychiatrist believes it a response to all the overwhelmingly shitty health stuff I have to deal with plus all the crazyass chemicals we put into my body in an attempt to control some of these issues. Then we discussed my allergies, and if I’d had any bad serotonin reaction to the Imitrex, which I hadn’t, but I told her I knew what to look for since I’d suffered long term serotonin poisoning before. She gave me a half-way odd glance but didn’t ask questions – I imagine with a health history like mine that wasn’t shocking.

She suggested we try Botox, since she sounded semi-skeptical that preventive meds alone were going to work. Apparently having a constant headache for a year and a half and a constant migraine for over 100 days makes you prime territory for advance measures, but since I don’t have private insurance, I may have to do paperwork gymnastics with whoever I do get coverage (if I ever do) to get them to cover it, but she believes it could be helpful. But that’s a bridge for another day. (And after that cortisone shot on Tuesday, the idea of sticking another needle in my neck/shoulder/head didn’t really appeal to me at the exact moment anyway.)

As for the protein testing and mitochondrial disease testing, we still await the whims of charities and Medicaid, so, you know onward Christian soldiers. I need to email and update my geneticist.

And while all that was happening, I cut my hair short. I had been growing it out because I was both poor and the hope that when it was long enough, if it started falling out, it could be used for a wig for me (and maybe eight other people), but in April/May my shoulder had become such a mess that I was literally unable to wash it for over a month and it became a giant, tangled disaster, so upon all attempts of untangling it, I accepted the inevitable, and made an appointment at on of the most respected privates salons in Charlotte and got it it cropped. I’m happy with it – most off the time.

So for now, that’s the news fit to print. Next week I’m supposed to go meet the podiatrist, but I think I’m going to move that appointment forward to after the Physician’s Reach Out application is processed, and I have therapy and a visit with my psychiatrist. (Which, by the way, every time I see that word I hear the Animaniacs pronouncing it “P-sychiatrist”, am I the only one?) Then June 4, I have my PRO appointment to apply and am supposed to see my allergist for follow up.

Meanwhile, the shadows shift, things change, and I wonder what will happen next. I cook as much as I can, I force myself to have a smoothie or two a day to get calories in my body, and distract myself from the pain when it keeps me from doing something useful with my waking hours.

I feel myself curling in, emotionally, circling in on myself and those who respond or reach out, which seems fewer each day. I try reaching out, extending invitations, seeking out the company of those I miss, but the responses of “I’m busy” or “yeah, we should plan something” with no dates being picked or being constantly put off make me feel wickedly alone, as if people are afraid I’m contagious. I’m not. Though, I imagine my sadness is, though all I feel when I see friends is joy & happiness, and would give anything to play games, make dinner for, or watch a movie with a friend.

Sure, my life isn’t as exciting as it used to be, but I still read, watch smart television, am taking an online course, talk to smart people about non-health stuff, and cook a lot, plus love games. I am still here, still me, still a person with a life besides my illness, and I feel like I’m lost within it – not only to myself but to everyone else. It’s lonely and frustrating. Even more so when I get texts or DM’s only when people have a question or need something, not when they want to talk or hang out. I am still capable of being a friend, of being a good listening ear, of being here for people – probably more so then before but no one wants to “worry” me more with their “silly little problems” which drives me batty because I would adore some normal, day-to-day issues to think about for a few minutes rather then meds, my blood sugar, balancing my carb/protein/sugar intake or wondering what the weather changes are going to do to my head.

I am that place of social isolation where I’m two steps away from hermtism. I think this is is likely true mostly because my doctors ask more about my social interactions and I realize how slim they are, and then it reiterates how lonely I feel, and the it spirals.

Life is hard when you’re allergic to the world, and the world doesn’t seem to want to come over for dinner and a game of Settlers of Catan.

So the shadows shift, my headaches and allergies control my life, and I creak words and exercises and meals out between new meds and glucose test strips.

I have two choices, I can drown in the darkness, or I can find a way to make a quiet, small home here, with the few folks who are willing to come visit me in it. I’m doing my best to do the latter.

Looming Shadows

I lay in a room filled with shadows. Literally, as the blackout curtains protect my delicate optic nerves from over stimulation. But also, metaphorically, as I await looming diagnoses.

What proteins am I not processing? Do I have mitochondrial disease? I don’t know and don’t know when I will, as I don’t even know when I will be able to get tested. The circle of hell that’s figuring out how to get someone to pay for/cover these tests just keeps dragging further along.

It’s been over three months since the suspected glutening that led to the mess of medical fiasco that led to my concussion. I am still struggling with it’s impact: a constant low-grade migraine with peaks of unspeakable pain, a noticeable loss of language skills, and more. June 21st is still weeks away.

I saw my fibromyalgia specialist last week and she has sent me home with a pile of new things: braces for my knees & thumbs/wrist, an MRI for my shoulder to assess if I should be off to the orthopedic surgeon, and a referral to the podiatrist to make sure I’m properly handling this weird right big toe/foot issue. The MRI was done last night; I should know by weeks end whether I am off to see a surgeon. Personally, I suspect, professionally, rotator cuff damage: the real question is, how much & how bad?

Meanwhile, next Thursday I meet the sleep specialist. I imagine that will be an interesting appointment as I went from being unable to sleep to sleeping 16-18 hours a day. I see a sleep study in my future.

I struggle to put weight on, small gains are set back by big losses of a cold, or malabsorption issues. I hope to crack 110 pounds again this month.

All the while, shadows gather, piling upon each other like piles of dark fluff til I almost can’t tell what is shadow and what is cat; the only difference is the shadows whisper doubts and fears and worries, Zelda purrs.

I have nightmares each night now about healthcare stuff: pills, hospital visits I get dismissed from while still sick because I don’t have insurance, needing surgery and being unable to afford it, dying while I await disability and Medicaid to sort out their foolish fight with my doctors over whether I’m “sick enough.”

I am near paralyzed with the fear. I know not what else I can do. I make calls, I push doctor’s offices and beg people to help and try all I can. I live on the mercy of others.

I am not lost, but I am alone and scared and I am weary of it.

I am struggling to keep fighting. I want to stop, to give up, to sit still and let someone else pull the cart, so I can just take time to process and heal, if not the physical stuff, the emotional wounds all this gouges into my soul.

In the last year I have lost my self identity, my careers, my loves, my great joys, and I will not get them back. And none of that speaks to the physical pain and frustration and betrayals and anger I feel at a world that has simply left me behind.

I can not rest, for to rest is perchance to sleep.

I am not ready for the final sleep, but it whispers from those shadows, I hear it. Not tempting, but taunting. I worry, with what a number of smart medical professionals seems to think is good reason, that those taunts with catch up with me before the decency of human kind catches up with our country.

And I am scared.

I wish the shadows were not so dark.

“Everyone’s a sub-specialist.”

I saw my Dr. Rissmiller, my fibromyalgia specialist, yesterday. I’m still processing that appointment so in the mean time I will leave you with this jewel of a quote from us discussing referrals:

“This is Charlotte. Everyone is a sub-specialist. There’s a shoulder specialist and a hip specialist and a knee specialist and a foot specialist.”

I came out of that appointment with another MRI scheduled, braces, and at least one referral, possibly two. But more on that once I can think clearly about it.