ALL ABOUT IVIG

I want to talk about my success with IVIG (intravenous immune globulin) since this is something that I am frequently asked about by other patients. I’m in a very unusual situation where I administer my own IVIG and fluids through peripheral venous lines (not using a port or PICC) at home without a nurse. I feel extraordinarily fortunate to have been able to get this treatment at all, but it feels particularly fortifying during this pandemic. Not only because I am receiving a protective, difficult-to-access medication, but also because, when covid hit, I was in a position to continue treatment uninterrupted in my home without needing nursing visits that would increase my risk of exposure to the virus.

It’s also unusual that my IVIG is prescribed by a naturopath, rather than an MD (let alone an immunologist), and that I do infusions once a week rather than every 3 or 4 weeks, and that I was approved for a high ‘immunomodulatory’ dose without having one of the autoimmune diagnoses that is typically needed and without having to do a vaccine challenge. Also, I don’t have side effects from IVIG, which I find miraculous, but I think it is because of how careful (and controlling) I’ve been throughout the whole journey. I researched and advocated for myself at every turn — undoubtedly more than was really needed — but I have no regrets since it has been such a godsend and I’ve had no bad reactions.

The story starts when I went to see Dr. Chia in 2014 (almost 3 years after getting sick) and he ran a bunch of blood tests that no other doctor had bothered to explore up until that point, such as HHV6 and Coxsackie antibodies, T-cell counts, and total IgG with subclasses.

For anyone navigating the newly-sick morass, I want to point out that I had seen over 30 doctors in those first 3 years, trying desperately to find one big brain that might have some insight. Infectious disease, endocrinology, neurology, allergy, cardiology, rheumatology, sleep doctors, ENT, gastroenterology, functional medicine MDs — you are shunted from one specialty to another to another with no one willing to dig deeper. I am even including appointments with my OBGYN, ophthalmologist and acupuncturist in that count because I was chasing down every lead I could (maybe it’s all hormonal, maybe my eye pain will lead to a brain discovery, maybe ‘dark yin’ is my problem after all). The big issues were missed until I was able to see Dr. Chia and Dr. Kaufman (ME/cfs specialists in California) and — this is the part for anyone who might be overwhelmed with where to start — a local naturopath (ND). In fact, the best help I got in Seattle was from two different NDs: they thought outside of the box and dug a little deeper, like the specialists. And I don’t mean woowoo shit, I mean things like checking for an immune deficiency DUH since I keep telling you it feels like my immune system just broke one day. Soon after I traveled to California to see Dr. Chia, I found an ND who ran almost the same battery of tests which revealed the same abnormal results. The first ND, who agreed I needed IVIG, but couldn’t get it for me, tried a bag of different tricks aimed at increasing my IgG levels. They didn’t work, but I was very grateful to have someone try something. Point being, if you can’t see a specialist, I would advise finding an ND who will look at your immune system health and infections and who is willing to walk the long road with you, being patient while you try (and, in my case, most often fail) different treatments.

But, I got ahead of myself. Dr. Chia saw that my total IgG was low and so were some of the IgG subclasses. He said I needed IVIG, but he didn’t offer to get it for me (I thought at the time it was because he was in California, but I now know Seattle patients that get IVIG through Cali doctors, so I’m not sure why he couldn’t have ordered it). Once I was back home, I asked my 4 doctors if they could help me get IVIG (primary care doctor, rheumatologist, endocrinologist, ND) and they all said no. My PCP did go a little further by asking an immunologist colleague, but he said my IgG would need to be lower or I’d have to do a vaccine challenge, which I refused.

I had given up and stopped asking when I found my second ND (who was very different from my first; both have been helpful in separate ways). The very first thing she said after entering the room on our first meeting was: “You need IVIG.”  She had reviewed my lab work (she had reviewed my lab work!! I don’t think any other doctors had actually looked at anything ahead of time) and seen that my IgG was continuing to decrease over the months. I had hypogammaglobulinemia and fit the diagnosis for common variable immune deficiency (CVID) and she was confident insurance would approve immune globulin therapy.

Between that day and my first infusion, 11 months went by. I delayed until I felt I had thoroughly prepared in every way to keep myself safe. Anaphylactic or anaphylactoid reactions can occur in any patient receiving IVIG therapy, but I had a history of both (plus intractable migraines), so I was nervous and wanted to control every aspect of treatment. My doctor was patient and accommodating. I don’t think any other doctor would have let me take the time to tackle each concern and build up the confidence to take the plunge. I think of it a little like a lost year when I could have been feeling better, but, like I said, I really can’t have regrets when things went so well.

First off was figuring out how to safely take pre-medications for potential reactions to the immunoglobulin and how to get IV fluids (which would be administered before IVIG) without side effects. I was extremely reactive back then because of out-of-control mast cells and I had no safe rescue medications or pre-medication protocol. IV fluids had caused angioedema and breathing issues; I was so sensitive to Benadryl, I couldn’t even take drops without feeling anticholinergic-type symptoms; tiny crumbs of steroids made me feel like was hit by a truck, running on a treadmill and sedated all at once. I didn’t feel comfortable doing IVIG without having a rescue protocol, so, during that year, I worked on my tolerance and put together a safe plan.

First, my doctor put me on bioidentical hormones because there is some evidence that they can help with mast cell reactivity. Then, we tried IV fluids, but only 250 mls, warmed up and run at a snail’s pace (my previous reactions were from 2,000 mls of cold fluids run very quickly on the day my period was due (when I’m highly reactive); I didn’t know any better). I even found out I was fine with two types of normal saline bags, but not another. I slowly gained tolerance to Benadryl (dye-free capsules, only) and Prednisone (finding manufacturers with the cleanest excipients), taking bigger and bigger slivers until I knew I could safely premedicate before infusions. Those that know me understand that the symptoms that have scarred me the most are my mast cell reactions. They are unpredictable and violent. Full-blown anaphylaxis almost killed me. I can’t adequately express how jubilant I was to have a safety net, to have protection, to be able to put a protocol on paper that anybody could follow in case of an emergency and to have tools with which to arm myself before a procedure. Having intolerable side effects from the things that are meant to counteract intolerable side effects was a scary place to be.

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Next, I talked to my doctor about starting with subcutaneous infusions (SCIG), rather than intravenous because all of my research indicated that the former was safer. She agreed, thankfully, although she gently pushed for IV for years after that.  I also asked if I could start with 1 gram at a very slow rate of delivery and she acquiesced to that, too. NO allopathic immunologist would have agreed to that EVER.

Then I looked into a hospital infusion versus an ambulatory infusion suite (AIS) versus at-home infusions. I was told a hospital wasn’t an option and the AIS was staffed only with a nurse, no physician. If I had a reaction, the protocol was for the nurse to administer supportive meds and call 911, if needed. Well, staying at home was a no-brainer. I would have a nurse in my house, but, more importantly, I feel much safer with my husband there as an advocate. Plus, we live very close to an emergency room and he could whisk me there if calling an ambulance didn’t feel like the appropriate move. In the past, we have sat in our car in the ER parking lot, waiting to see how reactions progressed. The high price of healthcare in this country is a great deterrent.

Then I wanted to look into IgA deficiency. There is some research that low serum IgA and anti-IgA antibodies increase the risk of anaphylaxis and the remedy would be to use a very low-IgA brand of immune globulin for my infusion (says my Labcorp test result: “Patients with IgG antibodies against IgA may suffer from anaphylactoid reactions when given IVIG that contains small quantities of IgA. In one study (Clinical Immunology 2007;122:156) five out of eight patients with IgG anti-IgA antibodies developed anaphylactoid reactions when IVIG was administered.”). My total IgA and one IgA subclass had been low in the past, but neither my doctor nor the infusion pharmacist suggested that this should be a consideration — I had to get the info from other patients and insist (nicely) that we test my anti-IgA antibodies. Gamunex-C was the brand that had already been approved by insurance and I knew that I was very lucky to have it and might lose it if we had to resubmit an authorisation, but safety first. Gammagard could have been a safer choice since it has extremely low IgA content. It took an excruciatingly long time to get those results but, ultimately, I did not show anti-IgA  antibodies, so we pressed ahead with Gamunex. And I’m glad we did! One of my nurses commented that it is the “top shelf” immune globulin and it’s been good to me.

The final hurdle was scheduling. Back then, I was much sicker in the mornings — shaky and very low blood pressure — but that is the time of day when nurses typically arrive for long appointments. I always thought, if I became a home infusion nurse, I would offer nights and weekends, just like my preferred shifts in the restaurants. There must be more patients like I am whose vitals stabilize as the day goes on. Also, my period was looming, a time of the month when I am highly reactive, so I wanted to avoid that whole week (although this wasn’t as easy as it sounds because my cycle wasn’t/isn’t regular). The day came when things eventually fell into place and my wonderful nurse, Marie, came to my house to hook up the IV fluids and teach me how to infuse subcutaneously. She showered beforehand and changed her clothes because she and some of her other patients have cats. She understood my nervousness and didn’t rush me or complain even though she had to sit in one room with me in a straight-backed chair for 8 hours. Marie came every week for 16 months to hook up my IV, but, once we knew I was doing well on this treatment, she was able to leave quickly and I would disconnect my IV fluids and do the SCIG myself.

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We started with 1 gram infused through a 2-needle set and F30 tubing. That probably made anyone knowledgeable with immunoglobulin infusions laugh because it is SO SLOW. Like, unheard of. My nurse had to do a special order for the supplies because they are normally only used for infants. Over the weeks, we slowly worked up to 5 grams (eventually using a 3-needle set and F45 tubing — only slightly faster), which is a typical ‘replacement’ dose for a primary immune deficiency patient of my weight. I stayed there for a year and a half, not pushing my luck in any way. Slow and steady.

In 2017, a miracle: I switched infusion companies from Coram to Accredo (with nothing to which to compare Coram, I thought they were fine, but things have been much better with Accredo) and they suggested I learn to insert my own IV catheter for fluids. Uuh, yes, please! Actually, they suggested my husband do it, but he’s not good at these things and I am, so a nurse came over and gave me a tutorial and that was that. I was only “allowed” one training session, so I wound up watching a ton of YouTube videos, which is why I’ve now made my own, in case they can be helpful for anyone.

For over 3 years, I’ve been placing my own peripheral IVs each week. It gets easier and easier and, honestly, I feel so much safer. Although Marie was very careful, I am more careful because I have a bigger stake in the game. I do not want to ruin any veins or get an infection, so I am vigilant (and superstitious) about my aseptic technique and I rotate veins to give them a break. Every single week, for the entire 16 months that Marie was my nurse, she used the left median cubital vein (antecubital or, as my nurses called it, the “AC vein”). I never questioned it because it held up well, but that’s about 60 catheters inserted in the same place (what a trooper my vein was!). As soon as I was doing it myself (and discovered I was ambidextrous when it comes to IV placement), I started using a different vein each week. I have 6 sites that I use, but 2 of them (on the outside of my forearms) are difficult — the veins roll and there’s always more of a risk of having to do multiple pokes — so I use the cephalic and AC veins more often than not, even though it means having to keep my arm straighter. I don’t use my hands or wrists, partly because I wash my hands so often, it’s an inconvenience and partly because I want to save those sites for easy access if I’m ever in the hospital with a nurse that needs fat veins for larger gauge needles.

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Holy roller

Then in 2018, another miracle: I switched from SCIG to IVIG and was able to continue to do it myself at home. Not only that, but I was allowed to continue infusing once a week, which kept my levels more consistent with fewer peaks and troughs, which in turn kept my energy more stable. IVIG is typically given every 3 or 4 weeks for multiple days in a row, necessitating a peripheral IV be left in place for 3 or 4 days (I can’t even imagine; 12 hours feels like an eternity). This is one of the reasons so many people get PICCs or ports.

I am regularly asked how I managed to get self-infusion approved at home. I didn’t do anything. I didn’t even know it was something that was allowed. I lucked into it with a good doctor, a good infusion company and a good nurse.

The first year I was with Accredo, I had increased my SCIG dose from 5 grams to 10 grams. My legs (my preferred place for the subcutaneous needles) weren’t happy, though. They weren’t absorbing the medication as well as they used to and they were swollen and sore for longer afterwards. I was using 6-needle sets to try to stop leaking and I felt like a pin cushion. I also wanted the option of trying high-dose IgG (my specialist had said for years that I needed 20 grams/week) in the remote chance that insurance would approve it. So I talked to my doctor about changing brands to one with a higher concentration, which would mean less fluid infused into my tissue. I was still adamant that I didn’t want to try IVIG. I didn’t want to tempt fate and I was scared of medications going directly into my veins and causing an instant reaction. My doctor pointed out that my body liked Gamunex, so I could either stick with what we knew didn’t cause a reaction (because Gamunex can be infused by either route) or stick with SCIG and change brands. I decided that it felt safer to stick with the brand I knew and loved, so IVIG it was.

They sent a home health nurse to do the first IVIG infusion. I had already placed my IV catheter and run my fluids when she arrived and she said it was perfect. Once again, we started at a low dose (2.5 grams) and ran it very slowly. We worked back up to 10 grams a week over a few months. During this time, I changed from the first awful, bullying nurse to one I adored (we could be friends in a different life). Jennifer showed me how to run the IVIG after the fluids and made sure I did everything right, but one week she said, “I’m just a fly on the wall. You place the IV, you run the fluids and medication, you disconnect. There’s no point in my being here.” So she recommended to my doctor that I do it alone under the condition that I have a responsible adult available at all times during an infusion in the case of anaphylaxis. That’s how I wound up doing it without a nurse and I’ve never met anyone else who is in this same situation.

The final miracle happened this year: My insurance approved the high dose IVIG (20 grams a week, which works out to almost 2g/kg/month, what is considered autoimmune or immunomodulatory dosing). I’m not sure which of my ridiculously high titers got it authorised and I’m not going to question it, I just thank the universe each week and try to keep finding the money (my 20% copay is $1,400/month). I increased slowly over months and had some headaches in the beginning, but nothing now. I am energised the day after. It’s like liquid life-force. I only premedicate with 25mg Benadryl, 20mg Pepcid and 4mg of Prednisone and I could probably do less. The number one benefit to doing it solo is that I’m able to program the flow rate as slowly as I like, which ameliorates side effects. If I had medical oversight, I’m sure they would insist I increase the rate, if for no other reason than to get the nurse out of here quicker. Talking to friends who have dealt with aseptic meningitis or incapacitating migraines, it seems to me that flow rate being too high is the major precipitating factor.

IVIG changed my life. I started the first wee tiny dose on October 2nd, 2015 and improvements in ME symptoms happened very quickly. By January 2016, I felt confident enough to write about them. They marked the end of 4 years of a steep and terrifying downhill trajectory and the beginning of a very slow, but steady uphill trajectory for the past 5 years. There have been lots of setbacks, plateaus and crashes (scary ones and months-long), but, overall, I’m stronger and more able-bodied each year over the last.

There are so many things I’ve learned along the way that I want to share like: try to get shelf-stable bags of fluids. My first pharmacy removed the air from the bags of saline before sending them and I didn’t know that there was another option. Once the bags have been accessed to remove air, they have to be refrigerated and thrown out after 14 days. They take up a lot of room in the fridge, it take ages for them to come to room (or body) temperature and you can’t have extras on hand when they’re considered unsafe after a few weeks. My bags now can be stored at room temperature in my closet and their expiration dates are years away, which means I have them for emergencies and don’t need to go to the hospital if all I think they can do for me is administer fluids (which is what has happened so many times in the past with my vasovagal collapses).

This took on even greater importance when covid hit. I feel so lucky to have extra supplies and the ability to give myself IV fluids without going near healthcare facilities. When I’m doing the clean-out for an upcoming colonoscopy, my doctor wants me to give myself IV fluids, which I wouldn’t have been able to do without this lucky situation. And when I imagine the big earthquake or an end-of-world emergency, it gives me solace to know that I am trained and my home is so well equipped.

I’ve also learned that I never want to use gravity tubing and an IV pole when a pump and carrier bag is so much easier, safer and more precise. I don’t have to keep my fluids vertical and elevated, dragging a pole around the house; I can walk around with the bag holding the saline and pump on my shoulder like a purse. I’ve even gone to doctor appointments and run fluids in the car during our California road trip last year after a big blood draw.

I learned from other patients to prime the air out of the bags through the tubing before priming the saline (fill the tubing with saline), which seemed slightly safer than the way a nurse showed me using a syringe, which requires accessing the rubber stopper. Uses fewer supplies, too. Less plastic waste.

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Medical waste

I called B. Braun, the company that makes my normal saline, and learned how to safely warm the bags before administration, so I don’t react to the room temperature (which is chilly!) fluids. I figured out that running fluids at a slower rate (150ml/hour) cut down on post-infusion headaches and it was even more effective to bookend the Gamunex with 500ml of saline before and after, rather than running the entire liter beforehand.

I learned that I can keep using the pump for 12 hours after it beeps that the battery is low. Again, less waste. (Although, I wouldn’t sleep with a low battery, just in case.) And I learned that the Bodyguard pump’s beeps terrified my dogs because they were too similar to our fire detector, but the CADD Prism’s beeps go unnoticed.

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Bad beeper

Wonderful nurse Jennifer gave me a fabric one-handed tourniquet which has made such a difference to my independence and the comfort of my skin. She also taught me that if the ultrasite on the saline lock is going to be unattached for any length of time and I don’t have a cap for it, an old nursing trick is to stick it inside an alcohol prep pad (leaving the wrapper on) and secure it with tape.

Wonderful nurse Marie taught me how to use gauze to support the catheter if it doesn’t lie flush with the skin and how to tape a loop of tubing to your arm, which has stopped my IV from being yanked out many times when I snag it on something. She also always used alcohol prep pads and iodine to clean the insertion site, something which many find overkill, but makes me feel more confident in my infection control.

I learned the catheters with wings are much easier for me to insert than the ones without and that you can ask for sterile gloves rather than relying on the box of non-sterile gloves that they send by default. I learned that you can order sterile pads on which to lay your supplies and IV3000 adhesive dressing that doesn’t tear up your skin like the Tegaderm that comes inside IV start kits.

I figured out by trial and error that some veins need to be stretched taut and stabilised and, if you are inserting your own IV and don’t have two hands, there are ways to do this by twisting your forearm and flexing your hand. I also found out that some veins are close to nerves and your thumb might have pins and needles for weeks afterwards, but they will, thankfully, eventually go away.

During SCIG, I learned that there are handy rate and time calculators for subcutaneous infusions and that if you are having trouble with leaking, swelling, hitting blood vessels etc., that you can try different needle lengths and different needle brands and — the key for me for whatever reason — different needle tops (the soft adhesive ones worked best for me rather than the hard plastic ones that needed to be covered with Tegaderm). I also learned that fat is key to comfort — the medication was much better absorbed if I put the needles in the back of my hips/ top of my butt (saddlebags??).

The most important thing I’ve learned is that although most patients in online support groups ARE NOT MEDICAL PROFESSIONALS AND YOU SHOULD ALWAYS CONSULT YOUR DOCTOR ABOUT EVERYTHING, they are a wealth of information. Doctors and pharmacies didn’t tell me anything about how to manage infusions safely. The majority of my home health care nurses didn’t verbally educate me — it was up to me to observe, ask questions and do my research.

Hyperthyroidism

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After dealing with thyroid disease for almost 9 years, I finally, for the first time, can definitively identify the symptoms that are coming from being hyperthyroid. When they found the goiters on my thyroid and diagnosed me with Graves Disease, I didn’t know my very overactive thyroid was doing anything to my body. Unlike these stories you hear (like Dr. Amy Myers‘s), I was not telling an unbelieving doctor that there was something wrong with me. Quite the opposite. I had multiple doctors see my test results and look at me, perplexed: “You haven’t been shaking, anxious, losing weight? Have you been losing hair or had temperature problems?” Nope, nope, nope. I had been hyperthyroid for so long that I just thought of myself as someone who had thin hair and could eat a lot. Everything else I chalked up to my high-stress job: I was “type A”, I didn’t sleep well because I had a lot on my mind. I wasn’t anxious, I was BUSY. Give me the radioactive iodine already and let me get back to work!

A few weeks ago, I started getting very stressed out about my upcoming trip to California. So much to plan, rentals to find, plane tickets to buy, packing lists to make, food to prepare and freeze, prescriptions to fill. And for the doctor I’ll be seeing, I have to write my history, years of tests to sort, scan and email, release of records forms to ten different clinics… Of course I was feeling overwhelmed–especially with finding places to stay since every day that I didn’t make a decision, more options would disappear. My sleep had (has) gone to hell, I’m waking up with a sore jaw from grinding and my teeth feel unstable. I keep telling my husband, “There’s too much to do. I can’t breath, my heart is racing, I feel like I’m going to have a stress-heart attack.” I lie down to rest and my mind … my god, it just races and my body feels full of electricity. I give up, come downstairs and speed talk at my husband. The other night he asked me, “How do you have so much energy right now, you didn’t sleep at all?” And I said, “It’s not energy, it’s adrenaline, it’s stress. Once the trip is sorted, this will stop.” That was my explanation.

I lost a little bit of weight and thought it was because I cut back on eating so many nuts. But I’m eating more in general: one minute I’m complaining about how full and uncomfortable I am and, five minutes later, I’m back in the kitchen looking for snacks. I said to my friend, “I’m stress-eating.” That was my excuse. I said to my Mom, “My hair has started to fall out again and it never even grew back from before.” In my mind, I was blaming the hair loss on weight loss, even though I’m only down a few pounds. That makes no sense! Such a small amount of weight loss hasn’t caused hair loss, your thyroid has caused both, you myopic fool.

A week or two before I started to notice all of this, I had increased my thyroid medication from 100ug to 125ug a day. I’ve changed my dose so many times over the years, I don’t give it a second thought. I certainly don’t monitor my body’s reactions because I am an expert at ignoring the signs, even when they’re not subtle. Just like when I was a workaholic and feeling these same physical symptoms, but thought they were just from job pressure.

When the penny dropped (I was recently told that Americans don’t know that idiom — it means you put two and two together or the light bulb went off), that all of it is overactive thyroid, I was so excited, so soothed. And it was suddenly so very obvious. This is textbook. I’m not an anxious person, I never have been. My neuroses are canted more towards rumination and second-guessing. It’s a fine line, but this tight, breathless, buzzing, heart-hammering feeling in my chest is not normal and is awful. Such a sad thing to realise that, even after all this time, with my body yelling its head off, I blindly make excuses. I could be standing here, cold and jittery, with a handful of hair in one hand and my third sandwich in the other, saying, “Gosh, this trip planning is stressful.”

It reminds me of that scene in The Man With Two Brains when he’s looking at the portrait of his dead wife and asks her to give him a sign if his new girlfriend is bad news. After the ghost turns the room upside down, Steve Martin says, “Just any kind of sign. I’ll keep on the lookout for it. Meanwhile, I’ll just put you in the closet.”

I’ve been putting my body in the closet. I’m so happy to finally know without a doubt exactly what my hyperthyroid symptoms feel like and even happier to know I can fix it.

Finally getting the first immunoglobulin infusion…

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The IgG infusion didn’t happen. They called me and said they were missing some small tube or something that was needed for my pediatric dose. It’s a little frustrating since they had literally months notice, but they have been excellent through this entire process–communicative, understanding, informative–so, I’m not annoyed. They asked if I’d like to do last Thursday instead, but I didn’t want to risk any reaction with my period, which came early last month. All I know for sure about anaphylaxis and angioedema is that they happen during a perfect storm of triggers (food, mood, hormones, hydration, pain) that is very hard to predict or control, but almost always involves my menstrual cycle and that is the one thing I can avoid. In the end, my period did come early, so I’m glad I made the choice to wait on the SCIG.

Today is the day. The nurse gets here in a few hours. I’m not out of bed yet. I’m in a lot of pain today and I was awake in the night with terrible vertigo. Every time I turned my head and changed position, the room lurched and woke me. I think it’s probably from the full dose of Zyrtec and Zantac I took yesterday, which I’ve never done before, but it could very well be payback from the 4+ hour journey to the dysautonomia specialist two days ago (more on that anon).

Anyway, the ball is rolling, the die has been cast, the airplane doors are closed (that’s what I used to tell myself when I was nervous about flying–once the doors are closed, it’s out of your hands, so no point in fretting anymore), so it’s happening and I am focusing all my attention on how incredible it will be to have a treatment that might help me feel better. Honestly, I’m dreading the premedications (Benadryl, Prednisone, Zantac, Tylenol) more than the IgG. I already know they do a number on my sensitive, unable-to-detox body.

Please wish me luck and send good juju this way. It makes a difference, I know it does. Thank you for holding me up. As Clarence said, “Remember, no [wo]man is a failure who has friends. Thanks for the wings.” ❤

Addendum: it just occurred to me that I didn’t specifically tell the infusion company to tell the nurse not to wear perfume, so I called her and she said, “Oh, I do wear body spray because I hit menopause and I can smell myself.” OMG. Body spray? She kindly said she would stop by her house and take a quick shower.
“I buy whatever shampoo is on sale, so I hope it’s not too smelly,” she said.
Gulp.
“No, I’m sure it’ll be fine.”
She then said, “I understand about sensitive patients. Remind me to tell you about the lady who was severely allergic to cats.”
Oh, for fuck’s sake.
“I’m very allergic to cats,” I told her.
“Oh, I have cats, so I’ll change my clothes, too.”
This is a nightmare.
She ended with (I kid you not): “I’ll tell you some horror stories when I get there.”

I’m vacillating between guilt at putting someone out (she was SO nice and sweet), frustration at my ridiculous body and total disbelief that a home-care nurse would wear body spray to visit patients and that the office didn’t explain my sensitives to her (they also didn’t tell her about my history of idiopathic anaphylaxis or that I have two big dogs. She said she just got a name and address). Please please please let this go okay.

Second addendum: the nurse is incredibly nice and lives very close to me, so the shower wasn’t a big deal and she doesn’t have a heavy smell at all. We’re half way through the IgG and the saline fluids. All good so far. 💪

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That's my abdomen--just one site for such a small dose.

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.

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Yay! Beach!

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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.

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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.

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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

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November Update

[Written Sunday morning:] Every morning I get up and vow to write some of the things crawling around my head and gnawing at my brain and then every day disappears into other things: cooking, feeling like crap, interacting with friends in my facebook group, reading, researching, tv… Today, I’m sequestered in one room while the cleaning lady tackles the rest of the house and I want to do a wee catch up.

Two months after the horrific Cromolyn-induced crash, I’m feeling much better. Not as good as I was beforehand, but so much better than I anticipated I would. If it takes 3 or 4 months to get back to where I was, that will be great–much better than the years I thought it would take (or the never I feared might happen). When I got home from the AirBnB rentals, my husband had cleaned out my bedroom: no furniture besides the bed and bedside table, no more clothes or books, everything hoovered and wiped down with ammonia. He put a vapor barrier up at the top of the stairs–one of those plastic doorways used in construction sites or the house in the film E.T.–and the upstairs is strictly a dog-free zone. Oh, it breaks my heart not to be able to snuggle with my kids and it crushes me when they hear me moving around and whine at the gate we have across the stairs. Another downside is, I’m doing far fewer preemptive rests and meditations because I don’t want to leave them and go upstairs. It used to be our routine to head upstairs a few times a day and lie down. My Little Guy had the times programmed in his brain and would bark to come in from outside and look at me like, “Let’s go, Mama! You need to meditate.” That doesn’t happen anymore and my brain and body are feeling the effects. However, I will begrudgingly admit that it is really reassuring to know that I am spending 12 to 15 hours a day in minimal dander and dog hair. I wake up feeling cleaner internally. That has got to help my poor struggling body, so I’m very grateful for all the hard work my husband put into dedogifying the upstairs.

What it used to be like:

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What I see now from the top of the stairs:

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I haven’t been sleeping very well. Much better than when I was horribly sick, of course, but not as well as I was in the last two rentals. My sleep in that last rental was amazing– I would close my eyes at 11pm and open them at 7am. A few nights that I was there, I woke up after 8am! Never, ever, ever have I slept straight through for over 8 hours without waking up from crazy dreams or painful bones and muscles. It was glorious… besides the fact that I felt poisoned by the new Ikea wardrobes. I wonder if the off-gassing from the new furniture was somehow drugging me into a stupour? Also part of the problem is my apnea devices. I continue to avoid the CPAP because it wakes me up constantly, but the new oral appliance has its own issues. I got the Narval by Resmed, made by a 3D printer.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

It is incredibly thin and light and bendy, which is everything I wanted and I’m able to fall asleep while wearing it… BUT. … I have worse TMJ issues than I realised and it causes so much pain. Every day, my jaw hurts, my temples ache, my head hurts and then, about once a week, I have a really rough, tense grinding night and I wake up feeling like my jaw is dislocated. It is painful to move and chew and clicks alarmingly. This can’t be good. So, I keep sleeping with no oral appliance or CPAP and I can definitely feel the difference in how I feel in the morning–less rested, more pain, but my jaw in tact. So, what am I to do?

I’ve started seeing my “physical therapist” again. Aka Magic Fingers. He is so wonderful for me. After a 3-month hiatus, the day I returned happened to be the day after he finished a course on strain-counterstrain for the nervous system. The teacher of whatever magic he does flew out to Seattle from the East Coast and trained a group of 30 practitioners. He said, “I’m one of only 30 in the world that have been trained to do this and you are the number one person I want to work on because your nervous system is a mess.” I keep my appointments with him no matter what. I even went last week when he was getting over a cold.

Speaking of colds, it has been 3 years and 19 weeks since I last had a cold. I’m amazed by that. I still live in fear of the day I catch a cold, especially since Dr. Chia said one virus could wipe me out and set back my recovery significantly, if not permanently. You may remember that he recommended I get IVIG to bolster my immune system and protect myself from all you sickies out there. Well, my MD referred me to University of Washington Immunology and they turned me down because my total IgG wasn’t low enough. So, I talked to my ND, Dr. W, and their clinic isn’t licensed to do it. On a whim, I went to see another ND, Dr. I, at a different clinic–mainly because they take insurance and I wanted to have a back-up doctor if I had to stop seeing Dr. W (who does not take insurance and, even with discounts for being unemployed, costs me too much money). The first thing Dr. I said when I came in was, “I think you need IgG.” Oh, bless her. There is hope for this treatment! But let me back up…

So, this new clinic requested all my test results in advance, they photocopied the entire binder and the doctor had reviewed it before I got there. They asked me to run my 23andMe results through MTHFRsupport.com and send them the results (so far, I’ve had 3 doctors tell me they know about methylation and nutrigenomics, but not a single one actually has addressed it. See some of my MTHFRsupport.com Genetic Variance Report here). The clinic has an IV infusion room, looking all dim and cozy, with plush recliners and blankets. They have a hyperbaric oxygen chamber! Something I have been curious about trying for over a year since I read Dr. Deckoff-Jones’s blog. And the clinic is 4 minutes from my house. Score. Dr. I ordered a load more tests and is willing to consider sub-cutaneous immunoglobulin first since I’m a scardy-cat about jumping right into IVIG (assuming we can get either of them approved by insurance, that is). A few days after our appointment, I went to the lab for a blood draw because she wanted to get updated tests and I see her again next week.

It'd be nice if they left some blood in my body.

It’d be nice if they left some blood in my body.

Speaking of test results (which can all be found here), I never mentioned the hormone panel and blood test results ordered by Dr. W in the last few months [bold type is for my benefit, so I can access this info easily when I look back). My varicella zoster IgG, IgM and HSV IgM were all positive. All coxsackie A viruses were high and all coxsackie B except for 3 and 4 (although 4 was high in Dr. Chia’s tests). EBV IgG was high indicating a reactivated infection. My total IgG was even lower than when Dr. Chia tested and, as I mentioned before, my thyroid was tanked: TSH, T3 and T4 all low. But the hormone panel was slightly alarming: almost everything was low: DHEA, progesterone, testosterone, estrone, aldosterone, androsterone, pregnanediol, tetrahydrocortisol and on and on. Not sure how concerned I should be, but Dr. W put me on topical DHEA (about 5mg rubbed into my abdomen in the mornings) and supposedly that should help something. It’s been a month now and the only difference that I’ve noticed is my period was 3 weeks late after I started it. My period has pretty much been every 28-29 days for 25 years. I just descovered today that it has MSM in it, which I’m not meant to have because of my sulfur issue. I’ll ask her about it when I see her on Wednesday.

So here’s what I’m taking currently:
Topical DHEA
Probiotics
Riboflavin-5-phosphate
Trace Minerals
Vitamin C
Vitamin D3
Vitamin K2
Fish oil
1/3 of a capsule of B complex #6
Magnesium
Biotin sporadically
Zinc sporadically
Charcoal sporadically
Quercetin sporadically
Gentian/Wormwood sporadically

I also started oil pulling a few times a week (when I remember) against my better judgement, but my nutritionist thought I should give it a try, so, why not?

I try to use my dry skin brush about once a week.

I am in my third month of Restasis and my eyes are worse than ever. They are never not bothering me. Swollen, itchy, tingly, burning, blurry, gritty. Always.

I have a new pillow, which is a god-send for my bursitits in my shoulders, but I had to let it off-gas outside for over a month. It still slightly concerns me, so I emailed Dr. Bob and here’s what he said: “We do not use flame retardants or any other harmful chemicals. On the Amazon site you can see our product obtained the Oeko-Tex Standard 100 Certification. This is a difficult certification to receive and shows this testing lab certifies the pillow is free of harmful chemicals. Oeko is the best know lab and certification for products to be free of harmful chemicals.” Hmmm… well, this thing stinks and I hope it isn’t off-gassing into my brain.

I love love LOVE having short hair. Can’t believe I didn’t do it sooner. Hair is such a nightmare when you’re sick and the cut disguises all the hair loss in the front.

Grainy photo, but you get the gist.

Grainy photo, but you get the gist.

What else?

I’m still on a modified AIP (autoimmune paleo) plus low-histamine-ish diet. I am not strict on AIP or low-histamine becasue I’m always trying to reintroduce foods back into my diet so I can have as many nutrients as possible and don’t develop even more sesntivities. I constantly warn everyone on my Facebook group not to take an elimination diet lightly and add back as many foods as possible as quickly as possible. It becomes a trap. Eating fewer foods causes a host of new issues (in my case, gastroparesis, worsening constipation and odd reactions that I never had before embarking on AIP). Also, the longer you don’t eat them, the harder they are to get back — both physically and mentally. Hence the reason I never eliminated ice cream, chocolate and packaged chips. God forbid I lose my unhealthy addictions. I need the soul food (although, I do really think one of these days I have to see if I feel better without sugar in my life. It’s just that it was easier to quit gluten, dairy, drinking alcohol and smoking than it seems to be to even contemplate eliminating sugar for a few weeks). One of these days I’ll write a post on what I eat on this diet, but, in the meantime, you can see photos on my Instagram account, if you’re interested (minus all the crap I eat–I’m trying to inspire people, after all, not cause them inflammation).

We ordered a free-range, organic, recently-harvested, fresh (not frozen) turkey for pick up today for Thanksgiving, but, to keep histamines low, we have to roast it right away (and then my husband freezes the leftover meat for me and makes bone broth from the carcass), so we are celebrating Thanksgiving today. We were going to have a get-together with our friends, Z and J, and my sister and her boyfriend (hence the cleaning lady), but it fell through, so the two of us are going to sit down to a 12-pound turkey alone. It’s ok. I’m thankful that I was feeling almost well enough to have some people over for the first time in 2.5 years. I’m thankful that I still have some people in my life to invite over. I’m thankful that I will have a yummy dinner and I don’t even mind that almost every meal I eat looks like Thanksgiving dinner and there really won’t be any different fun stuff. At least I’ll have turkey instead of chicken. And maybe the tryptophan will help me sleep!

Speaking of food, I’m starving and the cleaning lady is in the kitchen. I don’t want to get in her way or have to chat, so I’m trying to think of what else I can tell you all.

I made it to the freezing cold cemetery on the scooter for about 40 minutes a few weeks ago, wearing about 5 layers and carrying a hot water bottle. It was literally my first time spending some time outside in a month. The winter is hard that way. It really feels unhealthy to be trapped inside 24 hours a day. I have to make an effort to put on my coat and hat and go out into the garden. Please remind me!

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We bought a proper comfy dog bed for the kids seeing as they are arthritic and bony (it was on sale, has no fire retardants and is returnable at any time, even if used). It’s the size of a small country. 110-pound Bowie is thrilled when he can actually lie in it and Little Guy doesn’t relegate him to the crappy small bed.

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I found ants in my room one morning. They were running in droves all over the floor. It took days and days to kill them and there are still carcasses strewn about. It was pretty gross.

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I’m still going to therapy. It’s been great recently. He’s very interested in cultural history as a jumping-off point and that is helpful for someone who mourns the loss of Ireland and regularly starts blubbering over how powerfully I miss it.
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I have a lot of issues to work out there– An American by birth who never questioned that I was Irish, but wound up back in America and then felt rejected by the country I love… Marrying a man with an identical upbringing and thinking, “how perfect! We can relocate back home,” but it’s not home to him anymore… staying in America by default, year after year, but always wishing I was in Ireland and planning the eventual return… and then getting a disease that stops me from returning, so I have no choice, anyway. My therapist asked me if I’d be able to manage my illness better if I were living in Dublin and I said yes because my mother, aunt and best friend live there. And so does my heart. But it’s a difficult place to live and we’d have no money, so that’s not the answer.

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Ok, I can’t avoid it any longer, I have to eat. And that was really dredging the bottle of the barrel for stuff to tell you about.

I’m thankful for all of you, too, dear readers. You have no idea. Love and thanks and nom nom nom gobble gobble to everyone this week. X