How Much Is That Doggie In The Window?

Please enjoy this post from a fellow chronic illness blogger.

I never, ever, EVER ask other people for advice. But they love to give it to me. Even when I tell them that I don’t want it, they love to vomit it all over me.

“Have you tried taking Benadryl?” – Well, now, that’s the wrong question. The correct question is, “Have you taken more than twelve times the normal dose of Benadryl every day?”

But you’ve heard this from me before. So I’m going to take this in a slightly different direction.

The reason why I don’t like support groups is that sometimes they spread information that’s just downright wrong. I mean we’re not talking which color of the rainbow is better than the other, but shit that could kill you. And when it’s posted in a public forum, I’m absolutely going to speak up, even if I’m the only one doing so.

One woman posted something about the possibility of being allergic to her “hypoallergenic” dog. Immediately my alarms and flags went up, because people, there is no such thing as a “hypoallergenic” dog. All dogs make these proteins that are in dogs’ saliva, skin cells and urine; maybe not everyone reacts to them, but all dogs make them. I responded by saying that we have to avoid spreading misinformation because we have to understand that all dogs make these proteins and there’s no such thing as a hypoallergenic dog.

Then this dumb twit jumps in and tells me that I had better “watch what I imply” because her little girl has a dog that she loves. [Internal conversation: This one doesn’t know the definition of “imply,” because I didn’t “imply” anything, I came right out and said “Stop spreading misinformation.”] I told her her daughter’s affection for her dog doesn’t change the fact that her dog produces allergens in her saliva, dead skin cells and urine. Then the twit told me it was my opinion. I responded by saying no, it’s a scientific fact that all dogs produce the allergens. Then she told me that I was being a drama queen and that not everyone reacted the same to all dogs, just look at her daughter!

To drive my point home, I repeated again that it was scientific fact that all dogs produced the proteins in their saliva, dead skin cells and urine. Not all people reacted the same way, but all dogs produced them, and there was no such thing as a hypoallergenic dog. [Another side note: I am thinking of her daughter, and how sad it is that she is passing down her lack of education.]

Then another guy posted pictures of him and his “hypoallergenic” dogs. Fucking hell…..

And other people chimed in saying, “Oh, maybe your dog ran through some grass that you are allergic to,” or “Oh, maybe your dog ate something you are allergic to.”

But then the original poster admitted that her dog was staying with her parents for the time being because there is the possibility that she is actually allergic to her dog. 

BECAUSE HER DOG MAKES PROTEINS IN HER SALIVA, DEAD SKIN CELLS AND URINE THAT ARE ALLERGENS.

The reason that it’s such a big deal with this disease is that we can go into anaphylaxsis at any time, or we can have chronic bronchitis or pneumonia or other infections that we can’t get rid of because of weakened immune systems because our mast cells are going fucking bonkers. Some in the group have said that they would rather give up all food (and have) than give up their animals. That’s their choice, but I’m not pro-misinformation. The AKC is already fucking people (and dogs) over, but that’s a story for a different time. But I’m guessing that the twit who told me I had better watch what I say paid a fortune for her Yorkie from a puppy mill.

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Suffering For Art

 


Yesterday I posted this article on my Facebook page, indicating there are certain entertainers I won’t support even on Netflix/Hulu/Amazon because they still receive royalties. I won’t even check out their movies from the library.

I was subjected to “Annie Hall” my freshman year in college. Woody Allen is a whiny fuckhead criminal, and I don’t understand why people, especially women, keep clamoring to work with him. Who does he remind me of? The abusive guy who doesn’t live downstairs anymore. I have paid attention to the trailers of Woody’s subsequent films, and quite frankly, they have nothing to offer beyond what we have already seen. Who keeps saying he’s a genius? Other men who want to bang underage girls.

One of my friends agonized over the fact that “great artists” might be shitty people. And by “shitty people,” he means that they probably rape and molest women and/or girls and/or boys. But, by god, look at their art! What would we miss out on if they didn’t do all of those things to other people! So the conclusion that this friend came to is that we should still support and admire the art – works by Salinger, Brando, Led Zeppelin, The Doors, Mailer, Eliot, the list goes on.

My answer is no. I’ve never seen any of The Godfather movies. I’ve never lingered on a Pollack painting. Never read Salinger. When I find out that someone is a douchebag, I drop them like a hot mess. I will never again laugh or relate to a Cosby joke. He drugged women to fuck them, and then, you know, blamed them or tried to gaslight them.

Another friend who jumped in on the conversation jokingly said that he would support the art if he could pirate the material rather than outright buy it. But he would still miss the art too much if he had to give it up because he loved it too much; he was a huge John Lennon fan, and that outweighed any bad behavior.

What is especially disturbing is that the second friend wrote up a little speech during the first wave of #MeToo posts, saying he became aware of how unsafe women feel after a female friend asked, “But is it safe for me to go there by myself?” He expected and received a lot of accolades. But he and the other guy were pissed at me for this post about not supporting assholes and criminals. I mean, they both apologized for offending me, but only after speeches about why I shouldn’t be mad. Don’t be mad, brah. We’re just flawed and we don’t want to stop bad behavior if it results in good art.

We all attended the arts high school together. I’m always surprised and then disappointed when I think that we’ve all evolved at the same rate, because we had this really great experience, and I’m proven wrong. I’m a harpy now. Why can’t I be all cool about loving the art and understand that men will be men and suffer and need salvation – but know until then, they are going to beat and rape women and children?

I’m just wondering when I stopped deserving to be safe. Is it because I’m an artist and I should expect violence from other artists for the sake of art? Is it because I’m disabled and I should be thankful for whatever comes my way? Where is the motherfucking disconnect?

I’d much rather throw my money and my spirit at artists who aren’t shitty people. For instance, I like Sara Bareillas. I’m pretty sure we’re not going to be reading any shockers about her. I also like X Ambassadors. Have you heard about their partnership with No Barriers for the Renegade Scholarship Fund? “The organization helps people embark on a quest to contribute their absolute best to the world. From middle and high school students, to adults with disabilities including wounded veterans, the organization serves people of all backgrounds and abilities united by a common desire to live purposefully despite the barriers in our way.” And since I live across the street from the art gallery my sister manages, there is an endless stream of local visual artists I get to talk to and take pictures of their goods to post online for social media.

There are so many opportunities to support positive artists, both living and dead, that I don’t feel the need to give my attention or money to those who destroy others. I don’t accept the status quo. I don’t go along with the idea that I should like them or their art just because they are “classic” or “geniuses.” Now that we have the internet, we have access to so much more material. Besides, last time I checked, The Doors aren’t putting out any new songs.

Ring Around The Rosie

I don’t know if you knew this, but the old nursery rhyme “Ring around the rosie, pocket full of posies, ashes, ashes, we all fall down!” is about the black plague.

Or, actually, it isn’t, according to Snopes.

I think about it this time of year, while I maneuver my way through hoards of people who don’t cover their mouths when they cough, or if they do, they immediately touch the door handle I was just reaching for. The Plague. Everyone is just waiting to infect me, I know it.

I’ve been having a hell of a time just getting a flu shot. Until two years ago, I never got one. Then they started making an egg-free version, meaning they didn’t grow them in an egg base as the very cheap food source. Now they also make the shot preservative free. It’s the holy grail for me since I’m allergic to raw eggs AND preservatives. However, my PCP’s office won’t order it for me. They insisted I call my insurance company, but the insurance company told me they couldn’t tell how it would be billed (as in, would there be a special code for an egg-free and preservative-free flu shot?), so I’m supposed to get the code from the doctor’s office. The PCP’s office doesn’t know how to bill for the shot unless the insurance company knows how it should be submitted, otherwise I’ll have to pay out of pocket. So…………

Scratch all that. I just talked to Walgreen’s, and they have an egg-free, preservative-free flu shot on hand, and I just have to show proof of my medical assistance. So guess who’s getting a flu shot from Walgreen’s?

This is the reason why not having preservatives is a big deal.

I’ve been giving myself Humira injections since August 30th to combat hidradenitis suppurativa outbreaks that I’ve been experiencing for about the last 8 years. It’s another autoimmune disease that up to around 2 years ago, not much was known about. I’m not going to spill all here, but trust me when I say that it’s super, SUPER painful. And doctors were cutting infections out of me, but because of mast cell activation syndrome, the lidocaine they were using wasn’t numbing me, so I would feel every slice. Before the HS was diagnosed, all of the doctors didn’t understand why I was getting the infections, and they thought that it was something that I was doing wrong – not bathing properly (HA!), wearing the wrong clothing (HA!), shaving inappropriately (because I don’t grow hair – ???? – HA!).

The treatments for HS include getting monthly injections of steroids in the normally infected areas – which I don’t know anyone who would go for that – or using oral and topical antibiotics, which I’m allergic to. The last resort is Humira.

The bitch of it is that I’m also allergic to the Humira shots. On August 30th I did the first loading dose of 4 shots. I didn’t have a reaction until 10 days after that, so it took me a while to catch on, and the reaction showed up only on my legs and not my stomach.

So I thought, okay, there was no reaction to the two shots in my abdomen. I’ll just get my abdomen with the next two shots. Besides, doing the injections in my legs hurt like a bitch. But then:
20170915_190958(Keep in mind I never show my stomach to anyone. The zipper scar you see running from my belly button is the extra large cut my neurosurgeon had to do on 12/21/13 when he didn’t have anyone assisting him on that surgery, which is the one where he finally saw my abdomen with his own eyes and remarked how it looked like a war zone inside and acknowledged my allergy to the shunt.)

So these two welts showed up the same day as the injection, and hung around until the Monday after – about 5 days. After the itching stops the welts turn into huge bruises.

I called the manufacturers of Humira to report my reaction. I knew immediately what the problem was before I even called. They make the shot shelf-stable for up to 14 days so that if you have to travel or lose power, you can still use it without it needing a refrigerator. Conclusion: preservatives. Specifically, there are 8 of them in the medication. When I talked to the company, they said the FDA approved them ONLY to make the formula with the 8 preservatives. It’s possible they might release a formula with only 2 preservatives in 2018, but they are still waiting for the final approval from the FDA. They cannot allow me to take another form of Humira with less preservatives because it’s only approved for use in the U.S. with the 8 preservatives.

I have to stay on it. If I go off of it, it immediately loses its effectiveness by 20-30% for the rest of my life within the first 2 weeks of discontinuing it.

Humira does lower my immune response. I’m already compromised because of my non-existent IgG3 and IgG4, so I have to be extra cautious. I’ve noticed that I’m much more fatigued than normal while I’m on this juice. The maid doesn’t get a whole lot done these days, know what I’m sayin’?

Usually my stomach doesn’t see the light of day unless it’s the surgeon operating on me (you can see another horizontal scar on the right pic above), but this is the reality of the mast cell disease. If you don’t know me and you see me clawing at my belly in public, now you understand why. I really do want to rip my skin off.

Two days ago I woke up for another appointment and my entire upper half was covered in hives. In this pic you can also see the shunt protruding because of all of the scar tissue that is growing around it. The rate it’s growing is highly unusual; the doctors are seeing in 3 weeks what they would normally see in 20 years. But I have no freaking idea why I woke up with the hives because nothing in my routine has changed as far as I know:
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One thing that ended up on my good list is that I discovered that I’m not allergic to potato chips! Some of the other MCAS patients were discussing them in a group and so I took a chance and snuck some at a party – plain, salted – and didn’t develop hives, and didn’t lose the inside lining of my mouth or develop sores. The other crazy upside is that because I have POTS, I’m also encouraged to eat higher quantities of sodium so my blood pressure doesn’t dip too low. So, people, I am rediscovering Ruffles! I haven’t had them for decades! But they have to be strictly plain/salted, no other flavors including vinegar. It’s a nice change from the 8 foods I’ve been stuck with.

A Few Of My Favorite Things

I love sharing my favorite things – especially if they promote the use of less chemicals. If you get the chance, I highly recommending finding the movie “Chemerical” – as of 10/22/2017, it’s included on Amazon Prime video.

1. Make your own all-surface cleaner for pennies! 1/2 c. white vinegar, 1/2 c. rubbing alcohol (I prefer 91%), 2 c. water. That’s it! Blank spray bottles can be found in most aisles near cleaning supplies – not cosmetics. Those little colored spray bottles are terrible.

2. Make your own floor cleaner for pennies! 1/2 c. white vinegar, 1/2 c. alcohol, 2 c. water, 5 drops dish soap. That’s it! If it’s not enough volume, double it.

3. Deodorant/Antiperspirant: I was afraid that I wouldn’t find something natural that wouldn’t work for me, because I have HS and other issues and am very self-conscious. However, I took the leap and tried something from Etsy. Wow! I specifically went for the clay option to go for as much protection as possible. Sometimes I have to go in with my fingertips and make sure it’s spread evenly, but c’mon, people, it’s just skin! And it works! And I don’t break out in terrible hives, and the smell isn’t overwhelming! Aluminum-free antiperspirant ByJenJen

4. Cosmetics: I don’t buy many commercial cosmetics anymore. Do you know why you have to throw them out every 6 months? Because you put your makeup brush in your eye, and then you put your makeup brush in the makeup, then you put your makeup brush in your eye, then you put your makeup brush in the makeup…and you make bacteria soup. So with Aromaleigh cosmetics, everything comes in a little sifter jar. I just tap out what I want to use in the lid. Now that I’m getting (gasp!) old, I can also get matte colors instead of pearle – matte doesn’t show the creases as much. They also do a lot of face shades in warm, neutral and cool. And you can BUY SAMPLES of pretty much everything. I mean seriously, you can have a lot of fun. (Backup go-to: Meow Cosmetics. Same concept.)

5. Perfume: For the love of all that is holy, stop spraying that shit on. Stop it. It’s full of neurotoxins and stuff that makes men grow boobs and women grow chin hairs and stop being able to have babies altogether. You are the reason why girls are getting their periods at age 8. Perfume is in dish soap, laundry soap, hair spray, lip gloss, lotion, under eye cream, antiperspirant, and then you want to spray extra chemicals on your “pulse points.” You’re lucky you still have a pulse! Instead, go to Black Phoenix Alchemy Lab and do some serious shopping. It’s a little overwhelming at first, because they like to include poetry with their flavors. Just skip to the bottom and read which flavors are included. I also strongly suggest going to the directory and specifically looking for scents that you are familiar with or want to try, and they will list which products include those scents. I am allergic to patchouli and lavender, so I have to make sure I avoid anything that has either of those in a list. REMEMBER: ANYONE CAN BE ALLERGIC TO ANY OR ALL SCENTS, “NATURAL” OR SYNTHETIC.

6. Laundry Booster: Biokleen “Bleach” Oxygen Plus – It’s not really a bleach. It works like OxyClean but it’s got enzymes and grapefruit seed extract.

7. Laundry Powder: I tried to make my own – you can do 2 c. Borax, 2 c. washing soda and 1 c. grated Fels Naptha soap, but the fumes from the grated soap created problems for me, even with a mask on. So I started purchasing Biokleen products. I recommend either the powders or the liquids, they end up being very reasonably priced.

8. Dryer sheets: Guess what? Vinegar saves the day again! Moisten a washcloth with vinegar and pop it in the dryer with the load. You will not smell funky, don’t stress about that.

9. Toilet Bowl Cleaner: Yes, it’s Biokleen again. The Soy Toilet Cleaner is worth its weight in gold. I also use it to scrub my sink and tub if I don’t want to use vinegar and baking soda, or Borax. (Side note: Vinegar is anti-fungal – just think about how long you can keep that jar of pickles without mold growing.)

10. Oily skincare: I’m 43 and I still have the skin of a 13-year-old. It’s specifically about inflammation with me. My favorite products include Desert Essence Thoroughly Clean Face Wash (seriously cheap too!), Herbivore Blue Clay Mask and Herbivore Bamboo Charcoal Deep Cleanse Detoxifying Soap Bar (I got these as gifts – I love my friends!).

11. Aveeno Daily Moisturizing Lotion: I have bottles of this scattered around my tiny apartment and carry a travel size in my purse. It’s a great commercial brand that has low toxicity according to the Skin Deep Environmental Working Group Database. Are you familiar? You should be! It should be your bible! Here’s the Aveeno Lotion page.

And my favorite things wouldn’t be complete without my favorite actual things, as in the things I have reviewed, and yes, STILL use!

12. I still hang with my Oska Pulse. I stopped getting injections in my shoulder in May of 2017 after a full year, so I rely solely on my Oska Pulse to get me through the tough spots. I highly encourage anyone who has any type of pain to check it out and use it heavily. I swear it won’t cause you to grow an extra limb anywhere.

13. I use my Neo 185 Luxe Bidet every single day. Every. Single. Day.

14. Mo’s Dream Cream for pain – yes, Virginia, it still smells like hot chocolate and sledding parties wrapped up in your burrito dreams. I still use it on the regular and it has a permanent place on my bedside table.

That Time I Went Back To Arizona

About five months ago, I decided fuck it, I’m going back to Arizona to visit. I miss everyone and everything. A few weeks after that, I figured out what started this whole thing with my brain. (Yes, I mean figured it out, not the doctors.) I knew I’d have a place to stay with friends, and eating out was out of the question, so I’d just have to come up with a plane ticket. Done. It might be my last opportunity to travel depending on how much worse the scar tissue and the brain damage gets – literally no one fucking knows.

I have about 35-40 people that I would have liked to have seen, but I was only there for about 8 full days, so it was impossible. One night a bunch of people came over and we had a little potluck and hung out. The rest of the time everyone was gracious enough to drive to me, or I took the short bus to see them.

It was my first time traveling without being able to drive, either at home or my destination. First of all, nothing can happen on a whim. It took me about 2.5 weeks to assemble all of my medications and a vog mask, and that included negotiating with the insurance company to get an override on 8 of my medications that would have needed refills while I was gone but couldn’t get in Arizona – they can only be done in Minnesota, because I’m on medical assistance. I also had to make a trip to a compounding pharmacy.

Then the day before I left, a medication I had been trying to get for about 7 weeks was finally approved, so I had to go and get that – but it was such a high volume that there was no way I was going to be able to fit it in my luggage, so I decided to start it after my return. Every time I have to go somewhere, I have to request a ride from Metro Mobility – but I’m only allowed to call one to four days ahead of time. I can’t call on the same day. So I was on a dead run (or as much as I could have been for someone who is half blind) up to the day I left.

It was so worth it, though. Arizona was all blue skies. As I’m writing this, we’re getting rain in Minnesota.

Hopefully my friends know I love them, but I forgot to take pictures of them. Apparently I shoved them aside and made a beeline straight for their animals, which I am deathly allergic to. I did a little planning for that too. One of my doctor visits beforehand was to get my regular and steroid inhalers refilled so I could start on those prior to my visit. I also packed extra diphenhydramine and Claritin (above the 12x daily dose I already take) in anticipation of the fur balls, and every time I came home from a house with pets I changed clothes and put the contaminated clothes into a plastic bag and did a big scrub down.

First were the rescued baby kittens, all black except for a few white spots on some bellies. My friend was just grabbing and distributing them around the bunch of us, and I just happened to get my soul mate – a little one who has neurological problems. It just wanted to get as close to me as possible so it curled up tight against my neck and slept. Once in a while I felt it have tremors and twitches that were not at all normal. I was laying back so the fluid wasn’t trapped in my cranium, and I swear, it was heaven. I wanted to stay there forever. At one point the kitten woke up and started putting its little paws right on my mouth. (I’m in the blue.) I did get hives, but they may not have been as bad as they could have been because apparently the night before the kittens pooped all over each other and so they had to have an impromptu bath, which they loudly protested.

Back at my host family’s house, a large lizard showed up on their property wall. Usually they do not get this big!
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I was lucky enough to be able to spend two afternoons with my friend and his wife. He was instrumental in getting me to be active on Twitter after reading my blogs, which has led to guest spots on other blogs, podcasts, and our Blab series (now deceased because they couldn’t figure out how to make money off of the platform). These two are quite funny; the male, bright orange, is loud and LOVES women. The female, green, is a lot more quiet but likes to ring her bell ball to communicate. The male will say both of their names together and then swivel his body from side to side when he is showing off or pleased.
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Next were my good friends including a couple and their live-in mom. They were usually the first ones I would call when I needed a kitty fix while I lived in Arizona – they had three kitties I knew well. Within the past year and a half they ended up adding another cat and dog under pretty terrible circumstances. Their friends relocated from another state; my friends didn’t realize there was drug addiction and abuse happening. The kids have since been placed in foster care, and the animals were traumatized. Actually, the really big, long, grey kitty seems mostly okay, but the dog has suffered terribly.

When I came to visit, I was told to expect him to pace and whimper. I was also told that I shouldn’t expect him to eat, or approach me, because anyone else who has visited hasn’t had any success even though they were animal lovers too. So this poor, beautiful dog did start pacing. I made sure that I moved slowly, and told him that he was a good boy whenever he paused to look at me. Then I put two treats on the back of the sofa and turned away from them, and eventually he worked up the nerve to get close enough to take the treats. Then he paced close enough to smell my hands while I wasn’t looking, and then quickly paced away again. While this was going on, he was carefully watching how I was interacting with each cat, making sure I wasn’t mean. A couple of times I closed my eyes. I suspect my friends thought I was tired, but I was actually sending him messages of love.

We sat down to dinner, and I couldn’t eat part of mine because of an allergy, so I put it down on a plate for the dog. Another win! And he came over multiple times to sniff my fingers. I made sure again to not be aggressive. I told him over and over he was good.

I stayed long enough to go on his last walk of the evening, which he loves. He wasn’t even confused about there being a strange lady with him on the walk until one point where he crossed over to me and then suddenly was like, “Holy shit, who is this???” and then quickly walked on the other side of the sidewalk.

At the end of the night I was saying goodnight to everyone (read: handing out the last pets to the pets), and the dog was near when I was petting the pretty calico. He was again watching very intently to see if I was being mean. So I carefully got down on all fours and made myself small, put a treat in my hand, and put my head down, and HE ATE OUT OF MY HAND. Everyone was stunned and thrilled.

My friends ran me back to where I was staying, and let me know that when they returned home, all of their animals were lined up at the door, as if they were waiting for me to return. They had never seen that happen before.

The last evening before I flew home, I was able to visit with a former co-worker whom I had the longest work history with – something like 8 years together on our team. I also remember when she had her kiddos – vividly! Our conversation went something like:
Her: “I feel like something isn’t right.”
Me: “You’re in labor. Go have your baby.”
Her: “I’m not really sure. I’m going to wait a little longer.”
Me: “I don’t think you should wait. I think you should go.”
45 minutes later: Baby.

They have two cats and a dog. I failed to catch a photo of the dog, but she was a sweetie. The white cat, Gracie, is quite elderly now, and doesn’t put up with anyone’s shit, including the dog’s. The kissy photo was taken right before Gracie got pissy about the dog bothering her. Seamus is a year-old instigator of trouble and very handsome.

Obviously the mast cell disease is preventing me from being a crazy cat/dog/bird lady, so I suppose I should be thankful.

Anyway, it was really difficult to come back to Minnesota. The night I flew home, my friend’s little boy called me and told me to come back. Sheesh, kid – right in the feels.

Invigorate Is Code For Instant Relief – Product Review

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

This product I’m writing about today is the Invigorate pain-relieving lotion that has been formulated by the Resonant Botanicals company. They indicate that their ingredients include essential oils such as frankincense, sandalwood, lavender, bergamot, Bulgarian rose and orange to make the lotion smell pleasant. Then they compound various oils to make it easy to both apply and absorb. Last, they add magnesium and methyl sulfonyl methane (MSM) for painkilling properties. What comes out of the bottle looks like this:
20171018_092718As they have specifically stated, they wanted to make a product that both absorbed easily without an oily residue and smells pleasant, and that is definitely what they accomplished. Out of all of the pain lotions I have tried, this has the lightest scent. It also soaks in very quickly. I have never had to worry about waiting any length of time before touching any fabrics after applying the lotion for fear of making any permanent stains.

As luck – or unluck? – would have it, I got a nasty cold that turned into bronchitis two days after I received my bottle of Invigorate. Perfect time to pull out the big guns and really give it a go. The instructions were a little unusual for me: apply the lotion at the location of the pain, but also apply it over your spleen (left lower rib cage – thank you, nursing school anatomy class!). So for about 10 days, when I could remember in my fevered state, I would rub it all over my aching neck and then my spleen. I did notice almost an immediate relief in my neck; I’m not sure if there was any difference with rubbing it over my spleen, so I didn’t make that a priority.

A constant problem for me is the outside tendons running behind my knees. When I wake up in the morning I can barely bend my legs. Outwardly they appear fine, but if anyone could see what I feel, it’s as if someone has inserted marbles into the tendon sheaths. At night the same thing happens; the tendons tighten up and it’s painful to bend my legs or walk. I’ve taken to rubbing the Invigorate lotion into those areas behind and to the sides of my knees, and within minutes the stiffness and pain will ease up enough for me to stop thinking about it. The pain might still be there, but really, it’s just an afterthought, not ruling my every move.

Lastly, I managed to plan my first plane ride since moving back to Minnesota in 2015. Traveling wrecks me. I have to get to the airport early because quite frankly, I never know what to expect. TSA gets all handsy with their pat-down because I have to get wheelchair assistance directly all the way to the gate, and I have a TON of medications including a few injectables that have to be transported with ice packs. (Side note: I wait until I clear security, and then I sling my Darth Vader-like vog mask across my face to keep everyone’s bugs away from my mucous membranes.)

The downside to sitting first in the wheelchair for a few hours and then the plane seat for more hours is that my tailbone area starts to really hurt. I have osteoarthritis in my hips and the head of the femur doesn’t fit properly in the socket, but it’s not the same pain. I swear my coccyx is trying to punch a perfect hole straight through. I stupidly didn’t bring the lotion with me on the trip, but you had better believe it was one of the first things I grabbed when I walked in my front door when I returned. Without it my pain was a hindrance every time I sat on a firm surface for any length of time for about 4 days at the beginning of my trip.  So as soon as I could when I got back, I slapped some Invigorate on that particular spot at the base of my spine, and after just a few minutes could feel it kick in and the pain let go. I’ve had to reapply it a few times because I went to a meeting the next night and was sitting on a hard chair, but it was so much better than what it could have been without that extra assistance from the Invigorate lotion.
20171018_093113-1Quite frankly, I was surprised at how much and how quickly this product worked at mitigating pain. I do have one disclaimer, and that it can’t touch the gnarly abdominal pain in my abdomen from my allergy to the shunt that runs from my brain to my peritoneum – but then again, nothing does, so that’s not a shocker. Invigorate did a pretty good job on my neck when I was sick, on my tailbone area, and I continue to use it on the tendons behind my knees. I would definitely call it a win.

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Take A Left At The Last Resort

There is a young woman who lives in my current city who has had over 140 shunt-related surgeries since birth, and she’s 20 years old now. She doesn’t have the same condition as me – no one does. But I was lucky enough to meet her and her mom at the hydrocephalus conference last year and I’ve been following her progress. Within the last week she took a turn for the worse according to the updates her mom posts for everyone; this patient is allergic to nearly all antibiotics that have been created, and she’s developed an infection.

It’s especially dangerous because our shunts provide a direct path for bacteria to travel to our brains. Our shared challenge is that neither of us can get a shunt that is coated in antibiotics because we’re so allergic to a wide spectrum of them that it could kill us.

Doctors in this city had suggested that the patient could get a treatment that would somehow desensitize her to this wide spectrum of antibiotics in a city that is about an hour and a half from where we live. Her mom made the appointment and asked lots of questions, and she was told that it would take about six hours in the clinic, and her daughter would be cured. She started to have some nagging doubts despite being referred with confidence by her daughter’s trusted neurosurgeon. Doctors across the country were too scared to do this in a hospital ICU, but this doctor in a city of 65,000 could do it in 6 hours in a clinic? Her mom consulted with doctors in Boston as well as Johns Hopkins and cancelled the appointment. Everyone was of the opinion that her daughter would simply die at the clinic. She already can’t get another surgery unless she’s near death and unresponsive because her scalp is the consistency of tissue paper from all of the surgeries she’s had.

But now what? Cancelling the appointment may have saved her life, but no one really has a good idea for the next step.

I get that question all of the time: What’s next? If. I. Only. Fucking. Knew.

First: Everyone asks me what I have. I’m pretty sure I figured it out, and the doctors that I have most recently presented the theory to have agreed that it’s a solid theory, but there’s no real way to confirm it (though my Phoenix neurosurgeon suggested exploratory brain surgery in 2013 when he discovered my toughened membranes in my brain – no joke). So I still have to say that the doctors don’t really know (but I’m never wrong).

Second: After I say that the doctors can’t be sure, the response I get is, “Yeah, but what is it called?” So………………I don’t know is called “I don’t know.”

Third: The next question is always, “Is this going to kill you?” Now, I’m going to be Captain Obvious here. If no one has ever seen this before, and we don’t know what it’s called, then how could I possibly know if it’s going to kill me? My educated guess is that if my scar tissue continues to grow and take over my brain, I’m fucked. The tissue around the shunt and scar tissue that is turning gelatinous isn’t going to reverse; it will always stay that way.

What would you do if you were the 20-year-old patient and allergic to all but one of the antibiotics available in the U.S., and you had a systemic infection, and you knew that if you took another round, you could lose your ability to take any antibiotics for the rest of your life? And if the infection reached your shunt, you knew it could go straight to your brain and kill you?

What would you do if you had a mystery disease that paralyzed your face, made you walk and talk funny, and stumped over 60 doctors and it took away your life and livelihood? And what would you do if you had almost all of the doctors refuse to take you on as a patient because they don’t understand what is happening or they see no point in trying to help?

 

The Tender Trap Of The Gender Gap

I received three letters in three separate envelopes from the state medical board. I tore the first one open; a single page with the name of the respondent at the top and an official signature at the bottom. “Dear Miss: We are writing to inform you that your claim will not proceed because there is not sufficient evidence…

What the board was telling me is that my claim against three doctors is being denied. They saw my facial droop, my staggering walk, my shaking legs, heard my stilted speech, and then saw it go away when I tilted my head to manipulate the CSF in my cranium, and they wrote in my medical records that I was making it all up. It took me close to a year to get the correct testing after that. When I had everything together, I bundled it and sent it to the state including the disc with my complete MRI showing my brain had collapsed. I sent documentation from my previous surgeries. I outlined how their notes directly affected my life – both by delaying my care, and because I was denied by the Undiagnosed Diseases Network based on their notes.

The only conclusion that I can possibly come up with is that I’m a woman. Who could believe me? Why not attach a hinge to my cranium so I can flip my lid open for everyone to see, and then maybe, maybe, they will consider the notion that I’m telling the truth?

The irony is that this very place where these doctors work tweeted an article today about how there’s such a big gap in women being tested in healthcare trials, and how there’s still a huge gender bias against women when it comes to our symptoms being recognized and validated. THIS EVEN HAPPENS IN LAB RATS. So they are willing to admit it happens,

but

not willing to admit it happens with them.

Here’s another article that speaks directly to the phenomenon of being a woman in the healthcare system. Women are “emotional” and therefore shouldn’t be believed. By the way, female doctors can be just as unforgiving as male doctors.

I’m going to take a little time out to compare and contrast. I have a male family member who had rotator cuff surgery when he was a teenager, at least 13 years ago. He just had to have an EMG of his arms and possibly legs. I was explaining to him what to expect since his doctor’s office didn’t do a very good job. Let me emphasize that there’s a 13-year span between those two medical events. Yes, recovery from rotator cuff surgery isn’t pleasant, and an EMG isn’t pleasant.

In comparison, I’ve had 10 brain surgeries, 12 abdominal surgeries, 4 infections cut out, 7 crowns, 10 spinal taps, 2 EMGs (including my face), a year-long CSF leak, and a spinal blood patch in a 7-year period. For a lot of these I couldn’t have Lidocain because my body doesn’t metabolize it, and it’s the same for morphine. So every time I was poked or sliced or stitched, I felt it. I also tore the capsule and the tendon in three places in my left shoulder (but couldn’t get surgery because of all of the scar tissue I make). I’m also horribly allergic to my shunt that is still implanted and runs from my brain to my abdomen, so I constantly feel like I am being stabbed in my lower abdomen.

This male relative’s doctors immediately jumped at the first sign of his trouble. The help he has received is in stark contrast to how I have been treated, which is to be called a liar and to be treated as a hysterical woman. He was also considerably nervous about the EMG. I tried to reassure him that if he could get through rotator cuff surgery, the EMG would be much easier. Seriously, I would trade that CSF leak with just about anything. An EMG is a walk in the park.

So, what exactly do women have to do to “prove that they are in as much pain as men”? Shouldn’t it be the other way around?

Moving Past PTSD triggers

PTSD is a many-layered…affliction? phenomenon? illness? hurdle? I’m not even quite sure which adjective I want to insert here. I understand that it’s not a single event. It’s been rolling around and building up like some terrible snowman, and getting the diagnosis was simply the carrot nose and coal smile for me. The healing process has been nearly impossible to initiate because I’m having such a difficult time with finding doctors who will treat me in Minnesota (without writing such things as “Munchausen’s” in my charts); plus from November until the end of July I was dealing with a violent male neighbor who screamed and beat his wife and their cat on a daily basis. After numerous calls to the police department and fighting with the apartment managers – who were trying to force me to move, and were claiming that I was making everything up about the neighbor – the guy suddenly vacated his apartment. My stress level immediately reduced considerably. I’m happy to report that just a few days ago I managed to land a new doctor who is happy to help and cheerful to boot, and he’ll be essential when it comes to trying to control my mast cell activation syndrome issues (except for the brain/neurological problems – I still desperately need a neurologist and neurosurgeon). This does not mean that all of my PTSD symptoms are magically resolved. I wish!
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

ADD . . . and-so-much-more

Do we ever really heal from trauma?
What does “healing” really mean?

© Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
adding to the Habits, Memory, EF, and PTSD Series

Responding to a comment

Right after I published the second part of one of my PTSD Awareness articles, author and blogger Chuck Jackson posted a comment that asked a question I couldn’t  answer at length in the comment format.

Do you ever recover fully from PTSD?

Chuck went on to add some context to his question:

Looking at your list of symptoms (mental and physical), if I was honest with myself, I would still mark yes to over fifty percent.

The majority of the time, I live a happy and enjoyable life. It is only during periods of anxiety or prolonged depression, do these symptoms raise their dirty head.

They are not debilitating, just very annoying.

So, for…

View original post 2,272 more words

Oh Ye Of Little Patience

Well-meaning people direct me to online support groups all of the time. Why don’t they work for me? Because I’m a snob.

A couple of days ago, I was summoned across the street to my sister’s place of business, because one of her co-workers knew an artist’s husband very recently had had brain surgery, and thought it might be beneficial for us to visit. As luck would have it, I had just finished showering and slapping on some makeup, so it wasn’t a big deal to finish getting my clothes and wig on to hobble across the street. When I walked in the door, I immediately recognized the woman. We had briefly visited during a previous show at the gallery. She and her husband were very pleased with the surgeon and her husband’s recovery, so I got the name of that doctor and another from her.

However, she looked over the top of her glasses at me and started with, Have you gone to a chiropractor? Yes, I explained, many times, and they did absolutely nothing for me. She wanted to know if I had gone to an herbalist. Yes, again, I sighed wearily, I had, and I’m taking supplements out the wazoo, because I need to, because my diet is very restricted. But they don’t make me better. My issue is mechanical and I need surgery. Then she wanted to know if I had tried the Chinese herbalists next door. I held up my hand and said that I’m very good at researching and am 1 to 7 years ahead of everyone else’s suggestions, so there’s no need to make suggestions. Then she moved to food. Was I juicingI really needed to juice everything! I said no. She started listing everything I should be eating, so I started cutting her off, telling her that each item caused a release of histamines, so it was actually dangerous for me. (Plus, with the few things I can still eat, why would I juice??? I get so little fiber now, and juicing removes most of the fiber.) Did I try an accupuncturistAgain, yes, and they did nothing for me. I know, I know, hard to believe.

God, I hate getting advice, especially when I don’t say, “Give me advice, I have no idea what to do or where to look.” She did write down the name of her otolaryngologist surgeon, whose specialty is cancer tumors of the head and neck. I’m still going to contact him. My tumor is not cancerous and he may not want to deal with it because it will probably grow back, but it’s worth asking him. However, I may be blacklisted because of my negative encounters with three other doctors within the same university system who said my problems were psychosomatic.

So, back to support groups: I hate them. I also can’t keep my mouth shut. One week, someone posted something about how she wished our rare disease doctor would team up with another doctor who researches the same disease. Unfortunately, the other doctor doesn’t have a license, so he can’t see other patients. I pointed this out. She said fine, then everyone needs to take care of themselves and stop smoking so they’re not on oxygen. That really pissed me off because the majority of us in the group can barely eat any foods safely because we’re always dealing with hives, have a really hard time finding medicines that don’t cause hives/asthma/anaphylaxis, and don’t smoke. I’m fucking allergic to smoke. I told her she was lecturing the wrong group. Other people got pissed off too. But then another person singled me out and told me to tone it down, and then it just went downhill from there. I was told that I should have just kept scrolling if I didn’t like what I saw. Then the original poster said she didn’t know that doctors needed licenses and not everyone knows that. I got so angry that I said that the leading doctor in this field most likely already considered the option of teaming up with other leaders, but they were in situations he was trying to get away from, so it was a moot point, and we should use common sense.

I admit it, I’m a snob. (For some reason, the woman who was trolling me told me that I was going off on a tangent because of that last remark. I told her that there was nothing that I was saying that was off topic, and I was responding to everything she and the OP were saying. I don’t think she understood what “tangent” meant.)

I’ve talked about this with my counselor. She agrees with me that a group setting isn’t what suits me best. I tend to steamroll people. Just today, someone in a group asked, “How many of you have NOT had _______?” and a bunch of people said “I didn’t,” but then a bunch of other people said, “Oh, I did, and it was like this and this and that.” So I wrote a message saying, “So, I thought this was about people who didn’t?” I got a reply that basically said that people wanted to share no matter what the question was.

Why don’t those fuckers write their own blogs if they’ve got so much to share?