April 26, 2015 by Elizabeth Milo

The Gods Are Smirking

The chronic illness gods did not take kindly to my advertising their kindness and flaunting my good sleep luck.

After writing my last post, I had two tossy-turny not-restful nights that left me depleted and suffering brain drag.

THEN, the next night, my husband closed my blinds and curtains, but failed to notice that one window was wide open, so I was woken by planes, trains and automobiles at daylight. Plus, wind punching the closed blind in and out set up a sort of strobe light effect in my room.

THEN, the very next day, my husband untaped one of my curtains (they’re taped to the wall to block out every sliver of light) in order to fix something, but forgot to tape it back up, so I was woken at daybreak again by the bright line of sunlight on the wall.

THEN, we had some glorious weather and I sat for hours in the sun for the first time in 7 months and the burn on my back made sleep very difficult for two nights in a row. Every time I rolled onto my back or the blanket slid along my skin, I woke up.

THEN my painful spasming bowels and extreme swollen distension from constipation gave me no rest for two nights. Like sleeping with concrete pumped into your gut.

AND it all culminated in a terrible 7-hour drenching-sweats-and-night-terrors sickness last night. I woke up over and over soaked from my forehead to my toes and finally, at 7am, I woke myself sobbing. I’d just held my dying dog in my arms while I begged someone to help. He had two bloody stumps for front legs and half his face was gone and nobody in the crowded room was helping (people’s lack of competence figures prominently in my nightmares. I think my loss of independence has shaken me to the core). My entire system felt as if I had just gone through that. I heard myself wailing before I was even conscious of where I was and I had called my dogs into my bed before I was fully awake, holding them, crying.

Such is this dis-ease.

I stayed in bed until 5pm, feeling wasted and shaky, and only dragged myself up so my husband could wash my bed clothes. I really hoped the poisoned nights were behind me (it’s been 3 months since the last one) and I have a different theory every time. This time I think it must be my body detoxing whatever my bowels can’t. I have that new sleep drug, Belsomra, but I really don’t want to mess with drugs when things have been going so well. So, fingers crossed the gods are a bit thick and this post makes them think, “Oh, you’re going to speak of your bad nights? We’ll put an end to that!”

April 8, 2015 by Elizabeth Milo

Two More One Offs

Doctors, for me, are like one-night stands, only not at night and not fun. I meet them to scratch an itch, to see if maybe this person, with their unique knowledge and background might offer me something different… Trying not to have expectations, but, always, this dim hope flickering in the back of my mind that maybe this will be The One.

I didn’t see the neuro-opthalmalogist for 16 months after I was first given his name. I knew it was a silly referral and would be a waste of time, but I kept having niggling thoughts: What if they find something? You have neurological symptoms, after all. What if the problems with your eyes shouldn’t be dismissed just because there are bigger problems? What if this is thyroid eye disease? You won’t have good insurance forever. Maybe there was a reason you were referred to this doctor. Maybe it’s meant to be. Leave no stone unturned.

So, I finally made the appointment and waited 3 months to be seen.

I was in the clinic for 2 full hours. He was with me for 9 full minutes and spoke 5 full sentences. He thinks I have dry eyes.

Although I’ve been given the yellow ophthalmology eye drops twice before, this time I had a reaction to them, my throat and sinuses swelled up while I blew and coughed neon yellow all over a paper towel.

The doctor had never heard of that happening.
Of course not.
The doctor thinks, if I’m having a reaction, I should go to the emergency room.
Of course he does.

6 full hours later, I still can’t see properly from the drops they used to dilate my pupils and I feel like I was hit by a truck for no good reason.

——————————–

3 months waiting for an appointment with the fancy gastroenterologist at the University of Washington Medical Center Digestive Diseases Clinic, an hour waiting in the exam room and another hour telling my sordid bowel history and what was the recommendation?

… Wait for it…

Eat prunes and papayas and take Miralax.

Are you kidding me? Another one bites the dust.

Will someone please stop me from continuing this relentless search?

I should just stop and smell the flowers, instead.

New in the garden. Finally!

March 19, 2015 by Elizabeth Milo

March Update

I haven’t done an update in forever and it’s a shame because I look back on my updates a lot to see how I was in the past and compare it to how I am now. It looks like I’m at about the same level of functioning as I was at this time last year. A little worse, unfortunately. Last year, I was walking more steps, had been out in the garden more, was driving a bit (I drove to an appointment this week for the first time in forever, so there is some progress).

I’m still trying to regain some ground after the onslaught of nocturnal mast cell/viral/ME/inflammatory bowel reactions that started in September when I tried Cromolyn. Thanksgiving and Christmas were probably the two sickest nights of my life. As soon as I was resurfacing from Christmas, I got hit by another one on January 12th. As soon as I was feeling recovered from that, I had another one on January 28th and then again on the 31st. I stopped everything, including writing. For three weeks, I laid low and tried to reset my body. My constipation had become severe, so I had been taking massive doses of various different kinds of magnesium and I was afraid this was contributing to the episodes because there always seems to be some sort of bowel inflammation component involved (I get aches and what feels like electric pins and needles in my bowels and my flanks when I’m very constipated). When I quit magnesium, the constipation became critical — and a bit comical with the size of my protruding belly. I’m so uncomfortable, I wake up in the night when I roll over onto the poop baby inside of me. Where do the other organs go? I’m not sure how I continue to eat and I’m not sure why I continue to eat. You’d think at some stage I would just give my gut a break and eat liquid food, but I’m always hungry. I tried Triphala, Gentian, Medibulk, digestive enzymes, massage, enemas, prunes, oatmeal, even my old standby Wormwood stopped working. Which led me to the glycerine suppository on Oscar night which caused the (anaphylactic?) collapse on the bathroom floor. So, tonight I’ll be taking the generic polyethylene glycol (Miralax/Movical) that I have been avoiding because, if it’s too harsh, it’ll trigger a vasovagal reaction and I could pass out or, if it’s mild cramping, it’ll keep me up in the night. Not to mention it’s a nasty drug and probably made in China. But enough about that…

My father was visiting when the suppository episode happened and, a few days after he left, my mother came. That’s it from Christmas until now. That is my 2015. One quarter of a year summed up: reaction-recovery-reaction-recovery-reaction-recovery-reaction-recovery-visitor-visitor. Thank god for the visitors because the rest is really depressing. My friend M recently said that he fears not seeing those he loves ever again and, as we get older, that concern becomes more and more pressing. I think this all the time with my parents living so far away. Their visits allowed me to breathe easier. They filled me up with sustenance and gave me a little more mettle to carry on. I am incredibly lucky to have such a supportive and loving family. Recently, Jen Brea asked the ME community to post the most compassionate word or giving act ever received in relation to our illness (a very moving thread) and all I could think was, my family, my siblings, my parents, my best friends… their messages, words of encouragement, interest in learning about ME, physical help, monetary help, emotional help… Where would I be without them?

Both visits were wonderful and were needed more than I realised. My mother helped me with a hundred tasks I haven’t been able to accomplish and I got to hear all about my brothers and nieces and nephews, whom she had just visited. We managed to drive to the beach dog park twice: first, with my father and sister and, again, with my mother. It has been glorious weather in Seattle and getting out of the house is always the highlight of my months.

Yay! Beach!

Damn, he’s a fine looking dog. ❤

The one downside was, my husband wasn’t with us the first time, so I was without his deafening whistle and another set of eyes on our smaller dog, Riley, the escape artist. He ran around the rocks at the edge of the park and took off, causing me to expend more energy than I have in many months. I stood calling at the top of my lungs, over and over, “RILEY, COME!” and then started to panic when he didn’t reappear. At the top of my lungs and panic are not things that go well with ME. My voice is not strong, but, man, when my child went missing, nothing was going to stop me yelling for him. This is a dog that is only ours because he ran away from some other home and was found in a house barn, emaciated and unable to stand up. He’s an adventurer and curious about everything, while Bowie sticks to me like glue.

When Riley finally came into view, he was up in the car park and I sprinted up the sand embankment to the fence. Sprinted and up don’t happen in my world, either. Riley looked scared. He couldn’t tell where my voice was coming from and I was worried he’d run in front of a car or disappear, never to be found. He was tearing back and forth outside the park and I was calling over and over. He finally found me and I grabbed the scruff of his neck through the fence and sat down in the sand, waiting for rescue. My 72-year old Dad clambered up the rocks (cutting his shins in the process) and got Riley on a leash. I was half catatonic on the way home, like a rag with all the water twisted out of it. I crawled to bed, but, once again, bounced back quicker than I anticipated. And it was worth it. Mount Rainier on the drive home, through my glazed eyeballs, was spectacular. My Dad said it looked like a painting of Mount Fuji.

So, what else can I tell you about the last 3 or 4 months? I haven’t really taken any supplements this whole year so far. A few here and there, but, after every big episode, I would stop everything and go back to baseline. In the last week, I have been taking trace minerals, Vitamin D, K2 and fish oil again. I’m also still on topical DHEA and progesterone and just added topical pregnenolone and I’m about to add oral progesterone. It makes me nervous using bioidentical hormones, but they don’t seem to cause a reaction and both of my NDs recommend them, so I’m going with it. Apparently, there is evidence that DHEA+pregnenolone can reduce reactivity, so the goal is to take those for a while, then try IV fluids, then try sub-cutaneous IG and maybe even make my way to IVIG one day. I’ve been trying to get there since seeing Dr. Chia 7 months ago, so who knows how long it’ll take. I’m also still on the compounded thyroid hormones. All these compounded meds are costing me a fortune, though, and are not covered by insurance. One of these days, I’ll have to call this experiment quits and go back to my generic, dye-filled, filler-filled drugs. That’s it for what I’m taking. The Equilibrant, Nystatin, Hydroxyzine, Tramadol and Singulair are all languishing in the cupboard, unopened.

I had a few blood tests done in January. The big shock is that my cholesterol is sky high. Total cholesterol is 310, LDL is 194, Apo B is 124 (ideally <109) and LDL-P (particles) is 1755 (ideally <1000). There could be many reasons for this: my continuing low thyroid, my chronic and reactivated infections (coxsackie, HHV6, EBV, varicella, candida, mycoplasma pneumoniae), leaky gut and inflammation, genetics (both of my parents have high cholesterol) or something to do with my insulin/hypoglycemia issues. But, I actually think it is mostly to do with my diet. Over a year ago, I started an elimination diet for autoimmune conditions (AIP), plus cut out most high-histamine foods (fish, shellfish and avocado etc.). I cut out oats (I had already eliminated all other grains except rice), legumes, nuts and seeds, but continued to eat white rice (and rice cakes, rice pasta etc.). After about 4 months, I began eating a lot of ghee, butter and bone broth. I had my cholesterol checked in 2013 and it was fine, as it had been my whole life. In mid-2014, it had started to crawl up and, 9 months later, it’s now a pretty big problem. I’m pretty sure it was my inadvertent reduction in soluble and insoluble fiber (especially the former), plus the changes in the type of fat I was eating that caused the lipid problem.

Other January blood tests of note: low DHEA and testosterone (still), low insulin, high homocysteine (still) and my T3 and T4 are low (STILL). Don’t tell Dr. Erin, but I’m going to increase my liothyronine myself because these teeny incremental changes are just taking too long to fix my levels. Nothing seems to get better and more abnormalities keep emerging.

I’m averaging about 1,400 steps a day and 6 hours sleep a night. When I do sleep, my sleep has been better. I just put it together now that this might be because of the progesterone supplementation, which is meant to help restful sleep. Wow, I finally made a correlation. I still can’t wear the CPAP without all hell breaking lose and the oral appliance still wrecks my jaw, but I’m managing to get a solid 5 hours most nights, with another 1-3 tossy turny hours. I have my third sleep study tomorrow to see if the OA is helping the apnea at all. My other sleep issues (pain, night terrors, constant movement and muscle spasms, awakenings post-REM sleep) are still unresolved since I haven’t been able to tolerate the drugs offered.

My headaches have also been a bit better, maybe because I backed off the salt ever so slightly. I get doozies a few times a week, but I noticed that I didn’t really have a headache the whole time my father was here. My salt loading wasn’t helping my blood pressure at all, so I might need to be medicated.

My throat spot hasn’t been itchy in a while and I think the electric shocks in my left leg have been fewer and farther between.

I stopped using the Restasis after 4 months to see if I noticed any difference and I think my eyes have been worse since stopping, but I don’t know if they’re worse enough to justify a Rx.

Sore glands in my neck, crazy tinnitus, swollen sinuses are all continuous low-key issues lately. I started taking 5-6ml of liquid Zyrtec again a few weeks ago on a whim in case anything was seasonal allergy-related. As usual, I can’t really tell anything positive or negative.

My blood sugar seems better. This could be because I’ve diversified my diet (added back many nuts, seeds, oats, goat cheese, milk, potato, corn, chickpeas) and it also helps that my new endocrinologist explained that the danger lies more in how fast my blood sugar is dropping than how low it is. This was great to hear because I have experienced those sugar crashes where it can wind up in the 40s, but I was always nervous, if, when I was going to sleep, it was 73 or something, that it would continue to plummet in the night. She reassured me that, if I don’t feel the tell-tale shakes, it’s probably ok and I don’t need to eat. Having said all that, I got out of bed this morning needing to eat right away because I was shaky and it was 63, so it’s still a delicate dance. [<~ And, after I wrote that, I had a big blood sugar crash on my way out the door to PT because I didn’t eat meat for breakfast. I had to go back inside and cook a mound of lamb and a yuca cake and eat it in the car on the way there. I was 15 minutes late. I guess hypoglycemia isn’t really any better. Gah!]

My buzzy brain and neuro symptoms are definitely still here, always incapacitating when they hit, always signalling that I need to go to bed and power down. And I’m still stiff, inflexible, pulling muscles regularly, in some pain and pretty weak. My lower back has been a major issue recently and my husband bought me a back brace that I have to wear when I’m standing in the kitchen or I’m crippled.

My mood is fine unless I’m really sick or in a lot of pain and then I’m a scared, desperate caged animal, feeling like I can’t go on another minute. When I’m really sick in bed, feeling fluish, poisoned, inflamed and broken, the dark mental cloud descends and obliterates all hope and even the very rational thought that this will ease up. I don’t forget that it has eased up in the past – seemingly, it would be easy to reassure myself that it will again, but I can’t. It’s the knowledge that I couldn’t continue living if it didn’t ease up that causes the black blanket of fear.

But enough about that…

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The last time I was out on the scooter.

The bad news is, my scooter died at the end of December. It was my one lifeline to freedom and, although I only got out on it for about an hour each month, I lived for that hour. So, I have to figure out a way to get another. The best case scenario would be one that I could lift into my car myself. The cemetery is only a few blocks away and, ideally, I’d like to go for little outings without needing my husband and his truck, since he’s not home very much. I’m also thinking about the future when I have a smaller dog and will, I hope, have the strength to walk him on a leash using the scooter. Not sure there are any scooters that disassemble to light enough parts or that I would have the energy to put in the car, drive, take out and assemble, ride around for a bit, take apart and put back in the car, drive home, take out of the car again… Now that I see that in print, it seems a Herculean and impossible task. Plus, we can’t really afford one, anyway, when we spend more than we bring in every month. When we win the lotto, we can buy a scooter and a transport van that it can drive into. Or maybe I’ll just get better.

The good news is, everything is blooming and the smells in the garden are incredible. 🙂

This took me over a week to write, so apologies if it’s disjointed. Until next time… XO

January 5, 2015 by Elizabeth Milo

Mast Cell Madness.

I’m officially terrified by my mast cells because Christmas heralded another sick, sick few days. Almost as sick as Thanksgiving, so I’d have to say the 2nd sickest night of my life. However, this time, it all started with my tongue swelling up, which gave me more insight into the mechanism behind it.

I sometimes wonder if all my health issues stem from mast cell activation syndrome. I can tell the difference between ME symptoms and mast cell reactions, but, still, there’s this little seed in my brain that says, what if they’re at the root of EVERYTHING and I should be spending my time finding a doctor with MCAD expertise on this side of the country (it doesn’t seem to exist in Seattle)? I don’t do this because I am generally stable. On a day-to-day basis, I’m not having reactions — unless, of course, many of my chronic symptoms have mast cell degranulation at their core and I just don’t realise it.

My health issues started with full-blown anaphylaxis, out of the blue, 9 days after my 28th birthday. Doctors were hopeless and gave no advice back then, not even daily preventative antihistamines. The common denominator was alcohol (but not every time I drank, so it was confusing), so, after the last trip to the emergency room in Dublin, where I almost died, I finally quit drinking and haven’t touched a drop in 13 years.

Before that, I had swelling in my eyes and hands and a severe edema episode once or twice that I didn’t really think much about. I linked it to Asian food, so stopped eating that and MSG and didn’t look any further into it. This was eventually diagnosed as autoimmune urticaria and angioedema and I was told to take Zyrtec, but didn’t want to medicate daily for an intermittent condition.

I’ve always had trouble with my periods — crippling dysmenorrhea — but they got progressively worse until I collapsed with syncope and shock 13 days after my 32nd birthday and was taken off in the ambulance. For 6 years, no doctor gave me any advice until, finally, an OBGYN told me to dump salt on my tongue. This doesn’t stop the collapses, but it certainly helps. These episodes continue to happen randomly to this day, always on the first day of my period and are, without a doubt, mast cell mediated, presumably low-grade anaphylaxis (very low blood pressure and pulse, bowel problems, syncope, shortness of breath).

I have a spot in my throat that has itched for years. It was actually the thing that lead to diagnosis of my toxic thyroid goiters and Grave’s Disease because I mentioned the itch to some random doctor who palpated my throat. I’ve now realised it signals reactivity in my body at a very low level. It’s almost always there, but, when it’s not or when it’s very bad, I pay attention.

I was flushing badly for years, thinking I had developed bizarre self-consciousness, but the self-consciousness was actually a result from flushing and having people point it out! When I was diagnosed with Grave’s, I thought it was a symptom of that, but it never went away after ablation.

Of course, in retrospect, there have always been issues I have dealt with, which may or may not originate with mast cells: thyroid problems and Raynaud’s can be a result of mast cell disorders. Also, constipation, headaches, low blood pressure, and temperature sensitivity (all of which got much worse in recent years). Finally, many of my ME symptoms could also be from MCAS: fatigue, joint and tissue pain, eye pain, vision problems, vertigo, episodes of low body temperature, scent/odour/chemical sensitivity, sinus problems, cognitive impairment, hair loss, decreased bone density (I have osteopenia, on the cusp of osteoporosis), shortness of breath, medication reactions, malabsorption, and tinnitus. See a list of signs and symptoms here.

It would be wonderful to be able to manage and control any of these issues, but none of them scares me like the nights I’ve had recently, not even full-blown anaphylaxis. I’ve tried so hard to figure out my triggers, but they are moving targets. Tongue swelling and angioedema are obvious, as is the very specific breathing difficulty you get with anaphylaxis (it is nothing like asthma or wheezing from an infection). I don’t get daily hives and itching like many people. My reactions now are all about the histamine bucket and completely dependent on where I am in my cycle and what is happening in my life. I may be able to eat anything one week and then suspect that those same foods are giving me sinus trouble, insomnia and a jaw ache a different week. My chronic daily headaches, tinnitus, brain fog and exhaustion could be from food choices, but I’ve never been able to pin down any causation. My diet is very low-histamine compared to normal people and how it used to be, but I still allow myself chocolate, coconut, store-bought chips, beef, almost all fruit, including dried and many things that others avoid. Could these things be contributing to my problems? Yes, but, without a definite correlation, I don’t want to eliminate foods. Once you’ve experienced anaphylaxis, “reactions” like a runny nose, constipation or aching hands are quite ignorable. The only thing that consistently caused a reaction was alcohol and my periods. And, now I can say with certainty, holidays and events, no matter how careful I am.

—————————–

I prepared for Christmas over the course of a month and a half, slowly bought presents and wrapped them, slowly wrote some Christmas cards, slowly got the spare room ready for my sister, slowly did laundry — over the course of weeks! Didn’t overexert myself at all. There was no excitement, no activities. My sister and her small dog came over, we watched tv and opened presents. I had rested multiple times throughout the day and the only not normal thing I ate was half a tiny piece of fresh King salmon, which had been brought in off the docks that same morning and, I was told, caught the day before.

My tongue started to swell up after dinner. By the late evening, I had gotten upset for really no good reason (which has historically happened with my mast cell reactions) and was flushing. I had a bad reaction to about 15mg of Benadryl a week or two prior, so I was scared to take a decent dose on this night. I bit a dye-free capsule and put a drop on my swollen tongue and went to bed. At 2am, I awoke with the same evil that I experienced on Thanksgiving and the night after starting Cromolyn (before going to the AirBnb rentals back in September — it was a few days before my period that time, too). I was shaking so badly, I couldn’t lift the water glass, I was drenched in sweat and had weird runaway chills coursing through my body. I crawled on my hands and knees to the bathroom, which scared the shit out of me because, through all the worst of ME, that’s only happened once before. I fell into harrowing nightmares and woke up gasping for breath over and over, feeling poisoned and infected. I dreamt that I was sick and dying and my husband wasn’t paying attention or taking it seriously. I dreamt that I was sick and dying and my mother laughed at me (this isn’t remotely based in truth, this is my terrified mind not knowing how or where to get help). I dreamt that my dog’s neck was broken and I was carrying him to get help, but I was sick and dying and couldn’t do it. And, finally, I dreamt that I was lying on the floor begging my husband over and over: “Please kill me. Please kill me. Please kill me.” I woke up sobbing and so wrung out.

That morning, my period came 5 days early. You better believe, if I had known my period was going to arrive Christmas Day, I might have cancelled Christmas. Or at least postponed present opening for a day. And definitely not eaten even the freshest salmon.

In the past, my anaphylaxis episodes went like this:
My friend A’s birthday party.
My friend C’s birthday party.
Oktoberfest.
Easter party.
C used to joke that I was allergic to fun. I can’t believe he was right. I collapsed and had the paramedics called twice while my mother was staying with us and, also, when my best friend was here from Ireland — both were “events”. I started to get paranoid that, psychologically, I was somehow causing my system to crash when there were visitors. But, every single one of these times, I had my period. There were only a few anaphylactic episodes that I can remember when it wasn’t the first day of my menstrual cycle. EVENT + MENSTRUATION = MAST CELL MELTDOWN. But I think I only really and truly started to believe this 100% on Christmas.

So, Christmas day is a total haze. I crawled downstairs a few times to eat and try to put on a good face, but I don’t remember much and dozed most of the day. Like Thanksgiving and September, however, I bounced back quicker than I could have ever anticipated. That night I kept marveling, “How am I speaking? How am I sitting up? How am I alive?” When it’s bad, you honestly want to die. When it ebbs, the human spirit kicks back in shockingly quickly and you just get on with it, until the next time when you are surprised anew at just how bad the bad is. I didn’t even really modify my diet. I continued to eat my almond butter, coconut ice cream and drink bone broth and tea (all high-ish histamine). If anything, I felt more, Oh fuck it, how much worse could it be? At this stage, I’m much more scared of menstruation and engaging in any sort of event — even one in my house, in my pajamas, with only a single guest.

I am currently putting together an informational kit (in a bag that was donated to me by a member of one of my groups), so my husband has something to grab in the event of an emergency. My dilemma is that I’ve managed to avoid drugs all this time (never had to use my EpiPen), so I have no way to premedicate for things like plane flights, dental work or necessary procedures like a CT scan or colonoscopy (which my doctor has wanted me to get for years, but I refuse because I’m worried about reactions). I have no safe protocol. 13 years ago, I got IV diphenhydromine for anaphylaxis, now I react to 15mg of Benadryl! 5 years ago, I had IV morphine for dysmennorhea, now my breathing shuts down with a crumb of hydrocodone or codeine. What would happen in a real emergency? If I need surgery? Knock on wood, toba toba, ptooey, ptooey. Once I have everything compiled, I will post it here.

Having said all that, I’m really in quite a good place, feeling happy and hopeful about the new year. Maybe because I realise that these reactions are mast cell degranulations and not ME relapses and that takes some of the fear away. Somehow dying from anaphylaxis is less scary than becoming permanently bedbound with ME. Perhaps only people with both illnesses will understand that. So, here’s what I did New Year’s Eve:

As well as resilience, forgiveness, positivity and optimism, I’d also like to request that 2015 doles out truckloads of health, wealth and happiness to all of us. That’s all. That’s not too much to ask, right? 🙂

May 5, 2014 by Elizabeth Milo

May Update

Let’s see, what’s been going on in my life? Well, April was the best month I have had in about six months. I have been walking 1000 to 1500 steps a day instead of the 500 average in December. I have been out of bed for about 9 hours a day instead of the 5 that it was for so long. I’m still housebound, but I’ve been in the garden and tried driving myself to nearby appointments. Best of all, I’ve been upbeat. Just like that… I get some space from the crippling symptoms and my mood brightens and the future seems oh so hopeful.

I’ve been on Prednisone for three weeks now (my feeling better started about two or three weeks before, so I can’t credit Prednisone). As much as I don’t want to be on it, every doctor I see has encouraged me to give it a try for diagnostic purposes. It’s only 5mg, but it was still rough in the beginning. I wasn’t sleeping well and I was grouchy and hungry. Those side effects seem to have abated, but I have others that continue: more facial hair growth (which would be great if it were my eyebrows and eyelashes) (but it’s not), swollen, hot hands and feet and constipation. The latter is the biggest problem. I feel like my bowel is inflamed, swollen and stagnant, which is the opposite of what I would think steroids would do. On the plus side, my skin is much, much better (although I was warned about the Prednisone-withdrawal acne flares by my dermatologist) and my joints seem to be bothering me less in the night (specifically, my shoulders and hips. They still crack and pop constantly, but they’re not as sore).

I saw my first naturopath. Some of you, I’m sure, will roll your eyes and some of you will wonder WTF took me so long! I am in the best place possible to visit excellent NDs because Bastyr University is right up the road, but I’ve held out because my faith has always sat solidly with allopathic doctors and western medicine. But, now, I’ve lost all faith. I told her that, too. I told her I am conflicted: On the one hand, I applied, got in and intended to attend Bastyr. I have researched it and I know the training they give and the scope of treatments NDs employ… And, on the other hand, for reasons I cannot quite understand, I want some big machine to find the problem inside me and some specialist to prescribe a drug that will make it all better and I can go on living. I know better! I know that what happened to me was the perfect storm of genetics, upbringing, lifestyle choices, viral exposure, toxin burden, detox pathway blockage, immune system malfunction, nervous system blitz etc. I know that I need full-body, whole-life help, so I’m not sure why it took me 40 healthcare practitioners to finally see an ND.

Well, let me tell you, I left in tears of gratitude. I needed someone to replace the Good Doctor and now I have the Better Doctor. She spent 3 hours with me. What?! Who does that? She took my history from womb to present. She addressed everything. She had ideas to support my system from all angles: endocrine, digestion, liver, adrenals, nutrients, lymph, circulation and on and on. She said, “Email me any time and, if you are scared or freaking out about a symptom or side effect, call me.” Who does that? She said she wanted to come with me to my endocrinology follow-up to hear what the doctor had to say from the horse’s mouth. No cost. Who does THAT?!

She wants me to try some things that I would normally scoff at, such as castor oil over my liver and high-dose vitamin C, but, what I keep reminding myself is: a multi-vitamin gave you the worst side effects you’ve ever experienced . Your weird pressure-point-restore-circulation physical therapy is the only thing that has helped. So, I’m open to anything. She wants me to come in every week for hydrotherapy. I’m not sure what this involves yet. I’ll let you know.

The clinic gave me a huge discount on the visit and supplements because I have no income and it’s located about 5 minutes from my house, which means I can drive myself on good days. All in all, I’m excited. But, I have a history of being excited by first appointments and disappointed in the long run, so it’s a cautious optimism.

I finally managed to apply for disability. My “rehab counselor” (aka shrink) gave me the name of a lawyer and that’s all I needed because I couldn’t manage to get going on my own. I never spoke to the lawyer, only her assistant who told me what info they needed. I spent a few weeks creating a spreadsheet of all the doctors I have seen, clinic addresses, tests ordered, drugs prescribed and, when the phone appointment happened, she didn’t need anything else (thank god because talking is still so difficult). The hardest part was I got a letter from the lawyer saying they will submit the info, it will take 6 to 8 months for a decision. It will probably be denied and they will file an appeal and if I don’t hear from them for a year or two, don’t be alarmed. I knew this was the case, but it was demoralizing to see it in print. If I had managed to apply or find a lawyer when I left work two years ago (how the hell has it been two years?!? LIFE IS SLIPPING BY!), I’d already be at the appeal court date by now.

That’s about it for now. I’m very busy this month: a teeth cleaning, a new dentist for a new oral appliance for sleep apnea (and it all starts over from the beginning) and follow-ups with my GP, rheumatologist, nutritionist and dermatologist, plus the hydrotherapy and mental therapy appointments… Exhausting.

It’s chilly again here and one of my dogs broke his toe chasing squirrels, so we’re all stuck back in the house being lumps on logs. I did manage to make it to the cemetery on my mobility scooter on that last hot day (thank you, husband, for making that happen). It was glorious.

Rag and Bone Shop of the Heart

E.M. AND M.E. AND M.C.A.S.

Tag Archives: constipation

The Gods Are Smirking

Two More One Offs

March Update

Mast Cell Madness.