Save The Date

Statistically, Minnesota is one of the worst or the worst state in the U.S. when it comes to wait times for disability processing. I didn’t know this when I relocated from Arizona to Minnesota to try to figure out what was going on with my body. This article from the Minneapolis Star Tribune states the average wait time is around 570 days from filing to have a judicial review. I just got confirmation that my hearing is set for March 28th, which will put me at about 770 days of filing the appeal (and almost 3 years to the day of filing the initial claim of disability). The back log just keeps getting worse.

I’m not sure I would have done this any other way. As horrible as it has been with trying to get doctors to take care of me in Minnesota, I did finally get three diagnoses that I have been missing for years in addition to what I already knew. I forget what my count was when I entered the state, but I’ve seen 64 doctors since July of 2010. This has not been an easy process. There is no clear path.

Thankfully my allergist has already agreed to fill out paperwork for my hearing, and my counselor has as well. I will be meeting with my primary care doctor and pain doctor next month to ask the same from them. I’ve been rejected by every neurologist and neurosurgeon in the area as well as banned in writing by the Mayo, and I can’t go out of state because I’m on Medicaid so it’s not allowed, so I’m not quite sure how that is going to be looked upon by the judge. There’s absolutely nothing I can do about that.

One incredible resource I wish I had stumbled upon before I started this process but am eternally grateful for is the blog How To Get On. There are sooooooooo many links/ideas/resources/testimonials that it sometimes boggles my mind, and I really can’t imagine how many man hours it took her to put it together. It’s unfortunate that the author sometimes gets reported and blocked by Facebook for either posting “too much” (seriously??) or for questionable posts (again – say what??), so we have to keep it circulating so as many people as possible benefit from its content.

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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:
IMG_20171101_111839_548
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.

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.

Resonant Botanicals Home Page

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?

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?

A Slap And A Poke

It’s crazy being me. I say this so many times. I had mentioned the rare disease in my regular every other Tuesday get-together (most everyone has heard about it at some point), and a new guy had it in his head that he was going to school me on how he was going to cure me with diet and a holistic doc. He had the usual probiotic and chelation recommendations but also insisted I should eat sauerkraut. He couldn’t believe that said sauerkraut would instantly release histamines and give me hives. He also couldn’t believe that the Mayo would turn me down. I told him that I don’t ask for advice because I am always 1-7 years ahead of anything anyone can ever tell me, and I’ve never met anyone with my particular neurological symptoms with the mast cell disease.

<sigh>

On Monday, I was supposed to get a high volume lumbar puncture. That was the way it was ordered. This meant that the opening pressure was supposed to be read AND fluid was supposed to be taken off. When I was in the fluoroscopy room, I asked the radiologists and staff if they could carefully document everything before and after because my symptoms would change. They then offered to have a physical therapist evaluate me. I said great, yes, no one has ever offered that to me so I didn’t know it was an option. So they called the doctor to see if he would change the order.

However, when they got the doc on the phone, he changed the order and said forget it, only get the pressure reading and don’t take any fluid off at all. I was floored. First he wanted at least four vials (which is a lot), and then he wanted nothing?? I said that even if the opening pressure was normal, if they took some off, they would still see an improvement in my symptoms for a few hours. The doc said no way. Do not take any fluid off.

The radiologist hung up with him. He told me that he couldn’t go against this new directive and I had two choices: go ahead and get the pressure reading only, or stop everything and come back some other time. But here’s the thing: I only got this lumbar puncture because I called this neurosurgeon that I saw two years ago and begged for it, because I haven’t had my pressure checked since then. My current neurologist has been telling me I’m overdraining (even though no one has checked me) and I’ve been saying that the pressure in my head is high when I’m upright, and I felt like getting this check would help settle the fight. But the neurosurgeon wouldn’t agree to see me in the office. This was all I was going to get. So I went ahead.

I don’t metabolize Lidocain properly, so even though the radiologist juiced me up liberally, it wasn’t enough. It was also tough for him to penetrate my dura – possibly because of the sclerosing issue caused by my high histamine levels. After all of that pain my opening pressure came up as a boring normal level. Nothing to see here, folks. Except it completely rules out what my neurologist is saying about my shunt overdraining. My guess about why it’s not giving me a high reading is that the pressure lowers when I’m flat. There’s only been a couple of times when I’ve had high readings and I’ve been flat.

On Monday night, I ate some homemade spaghetti sauce and woke up the next morning to find that my entire mouth had swelled up, and the lining had sloughed off. I also had sores all over the inside. So tomatoes are now a big no-no. That’s a bummer because I make killer chili and lasagna.

Also kind of new in the past few weeks is another diagnosis. I’ve been struggling with this for at least the last 7 years as well. Doctors were telling me that I must be doing something wrong, blah blah blah. It’s super painful. I have hidradenitis suppurativa. I’ve had it come up in two different areas not close to each other and had to have “surgical intervention,” which makes it officially grade II. I’ll be seeing a new doctor Monday to talk about injections; it’s controlled by a medication that is similar to Imuran, which I was on in the past. The crazy thing is, I saw a very extreme case of it a month prior on a British show on Netflix called “Embarrassing Bodies” but had no idea that it was the same as what I had brewing. (Let me tell you, if you are fascinated by all things medical, that’s a good one to watch.)

Pat, I’d Like To Solve The Puzzle

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This week I’ve been taking care of stuff; taking care of me by walking to make myself stronger, taking care of medical records, taking care of clogs in my sinks and taking care of throwing out excess trash. It’s the medical records that sent into emotional pits, though. I was angry after reviewing a bunch of misinformation and it was rolling around in my head. But then I had an epiphany.

Back when I started having operations on my cranium, when my shunts were relocated from my back to my brain, my neurosurgeon remarked that my meninges were incredibly tough to break through. I don’t believe he’s ever noted that on my medical records, though. But his memory is like a steel trap so if I went back to him, he will probably be able to recall it with certainty. It certainly stuck with me. He said he had only seen it once before in his lifetime.

And then there was this published paper by Jonathan Kipnis where he explains that he and his team discovered lymphatic drainage vessels in the cranium. They weren’t known about before because when autopsies and dissections were performed, the lymphatic vessels were torn and destroyed because of their fragility. This paper was published in July of 2015; I traded emails with Jonathan in November of 2015. He explained that he doesn’t actually work with humans in clinical trials so he couldn’t help me, but after I connected the dots this week, I emailed him. I’m not sure I’ll hear from him.

Lastly, I have this mast cell activation disease diagnosis from Dr. Afrin. When I saw him in January, he told me that my outrageously high histamine level is probably what is making everything change and grow into scar tissue, including the tumor, as well as the tract along the shunt.

So here’s what I think is happening: Back in 2010 when I first started having the really bad symptoms, the meninges had already turned tough because of my high histamine levels, and the fluid can’t drain properly into the lymphatic drainage vessels like it normally would. That’s why I need shunts. The shitty part is that I’m allergic to the shunts. Just as an aside, this whole time I thought that the underlying cause was an autoimmune disease, but of course I had no idea what it would be.

So what now? That’s the question my mom asked. The tissue that has changed cannot be changed back. There is nothing on the market that I’m not allergic to. I’m at a high risk for aneurysm or stroke. This is going to kill me, there’s just no telling when. I mean really, who else do you know that is going through this? None of my doctors would be able to begin to guess.

Of course, I have to check with my doctors…but again, I’m the one leading them, not the other way around, which is almost always the way it is with rare disease. First I’ll see the neurologist and explain all of this to her, and hand her Dr. Afrin’s notes and Dr. Kipnis’ notes. I’ll see Dr. Afrin in August. After that, I’ll contact my neurosurgeon in Phoenix and roll this past him. I hope that he remembers that I was right about everything that I told him, even though some things took as much as 2.5 years to admit.

So for now I’m still waiting for my disability hearing. I talked to my attorney’s office and they called the person who sets the dates for the hearings, and they were told that hearings were being set for 18-22 months past the appeal filing. My last appeal was filed in February of 2016 (the initial filing was April 2015), so by the time I’m in front of a judge, I’ll have been waiting for nearly 3 years. Every state is different. I can’t get a rush unless I’m homeless, stage IV cancer, a danger to myself, or I have no access to care.

So I wait.  

All You Need Is Your (Whole) Health Back (Movie and Book Review)

Half of the adult population around the globe has some sort of chronic condition, varying in severity. Some are lucky enough to barely be bothered by it except as a reminder on their calendars once every few years to get checked by a doctor for any notable changes. Others can’t move an eyelash without being reminded that their body has taken on a long-term burden and there’s no relief in sight. A huge majority fall somewhere in between. Because of this, and social stigmas falling away regarding the discussion of chronic conditions, the market is being flooded with all kinds of materials and “how to” manuals for coping.

Through the Chronic Illness Bloggers group, I was lucky enough to be given these two products as part of a product review through the Chronic Illness Bloggers network. Although these products were a gift, all opinions in this review remain my own and I was in no way influenced by the company.

The two items that I was given in tandem were a documentary called “The Connection,” and a book called “The Whole Health Life.” I didn’t approach either medium with any expectations, which turned out to be a good thing, because I tend to be very particular and picky – I don’t want my movies or reading materials to be too “preachy,” nor do I want them to assume that I know nothing about my diseases. Most of the time I see manuals out on the market that are written with new patients in mind, not with 20-year war veterans like me.

First, I’d like to cover “The Connection.” I’ll admit, I reached for this first because I didn’t feel like I had the attention span to get me through a book right out of the gate. I was quite pleasantly surprised. It was a good pace, but not overwhelming, while still giving the audience constant reliable information to process. For instance, I learned about “medical hexing” – many patients are told by doctors that we’re not going to get better. Would you believe it if I told you that two weeks ago, my primary care doctor told me that I should just give up and accept that I will never find a neurosurgeon who will be willing to help me with another shunt surgery and who will take my tumor out? Boy, is that ever a hex! But a hex doesn’t have to be that obvious. It can be about giving you a pill rather than looking at your whole lifestyle and looking at what can be improved upon. 

More points from the movie hit home for me, especially since I’m having such a hard time finding doctors who will help me. For instance, if I have zero support – friends, family, doctors – I’m three times more likely to die early. Luckily I have some really great family and friends. Also, belief is part of why we get better, but it takes both the doctor and the patient believing. So far, I don’t have the doctors backing me up. And I also learned from the film that our genes do play a major role in what we do develop as far as diseases go, but our life experiences and our environment also trigger the genes. In other words, you could be perfectly fine but if you go wading knee deep through an oil spill, chances are that MS is going to come leaping out that has been lurking all these years.

So if you haven’t picked up on it, the documentary “The Connection” got my attention. Because of that, I was confident that the book “The Whole Health Life” would be engaging – and it was. And that says a lot, especially coming from someone who has the attention span of a gnat at the moment.

As readers, we can spend more time on the book, relating to what the writer is saying about wading through the soup of pain and foggy brain, trying to get through an able-bodied world and looking normal on the outside. Immediately the author, Shannon Harvey, introduces the core concept: we cannot deal with health by separating “body” health and “mental” health. They are intertwined and inseparable. A pill may address one portion and meditation may address another portion and talk therapy may address yet another potion and engaging in positive social activities may be uplifting, but when consumed in isolation, they hardly make a difference. When combined, they improve a person’s well-being by leaps and bounds. Ms. Harvey breaks it down into 10 topics to easier process and incorporate the practices into daily living.

For me, meditation is difficult. As I mentioned before, my mind is more that of a squirrel than it is a turtle, but she talks about the benefits of calming the mind and recommends a few easy steps that anyone can pick up. Emotions logically follow right after that. What are we doing to process our emotions? What do we allow to play on our inner recording? And then there is the “placebo effect.” Let’s try changing the name of this, the taking of sugar pills and still seeing positive results, as if a patient has taken “real” medicine; what is really at work is the power of belief. The belief that a patient can heal and become well again (or at least have an improved life) that comes with the motion of the taking of the medicine is just as powerful as the drug itself and has been documented for hundreds of years; it’s why people “pray” when it seems all hope for recovery is lost.

Of course, on the physical side, what we put into our bodies and how we move our bodies makes a huge difference. Eating the foods that are the best for us, sleeping the right amount and exercising to the best of our abilities are all important in our recovery and maintenance.

As a “spoonie,” as those of us are known who have chronic conditions that cause fatigue and pain, many of us keep blogs, as I do, as well as participate on social media like Facebook, Twitter and Instagram. We seek out others who are like us. We appreciate having others who understand our daily (and sometimes hourly, minute-by-minute and second-by-second) struggles. I think that “The Whole Health Life” would be a good book to read and re-read because we tend to get stuck in patterns that reinforce the negative feedback loop – myself included. If someone isn’t feeling up to concentrating on words, then they can sit back and watch “The Connection” for some reinforcement.

Please visit the documentary movie “The Connection” here.

You may purchase the book “The Whole Health Life” by Shannon Harvey through Amazon here.

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