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?

Give Me Liberty (In A Dropper)! – 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.

Unfortunately, one theme that is constant and recurring in the chronic illness community is pain and fatigue. No matter the ailment or diagnosis, these are our constant companions. In my family alone we are a soup of autoimmune diseases – where there is one, there are many. I have Hashimoto’s thyroiditis, alopecia universalis, hidradenitis suppurativa and mast cell activation syndrome. Other immediate family members have lupus and RA, and branching out we have polymyalgia rheumatica and MS. The only one on my personal list that doesn’t cause me pain and fatigue is the alopecia, and that’s because I no longer get 75 shots in my scalp every three weeks.

I was really excited to have the opportunity to try the Liberty Lixir Ultra High CBD Tincture.
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Now, I don’t know how much you, dear reader, know about CBDs. I also don’t know how much you know about hemp vs. marijuana. I can give you a quick and dirty explanation since I was on the medical marijuana program through the State of Arizona for some months because I’m allergic to the shunts that have been implanted in my brain and it’s incredibly painful. Hemp = legal, made into all kinds of products including paper, clothing, balms; can be cooked to extract chemicals at certain temperatures called CBDs, which are natural painkillers. Has less than 0.3 percent THC on a dry-weight basis, therefore making it nearly impossible for you to get high off of hemp. Weed = much less legal across the board relatively speaking, beloved for its much higher THC content and therefore “trippy” effect, also can be cooked at a certain temperature to extract CBDs.

This particular product is made from hemp. Because it still has that trace amount of THC, you have to be cautious about consuming this if you are going to be subjected to any testing. It’s a bummer, I know, because it’s not like you’re doing something you shouldn’t be – you’re just going for some pain control.

And this little bottle does a stellar job. Liberty Lixir packs a good wallop with the 1,000 mg of CBDs. It’s a very simple formula too. The hemp oil is mixed with coconut oil and vitamin E, and as noted on the bottle, you don’t have to worry about GMOs or anything unnatural. As you can see, the solution is completely clear:
20170804_200759-1 The instructions are simple. 10 drops under the tongue, hold them there for 60 seconds (so they can absorb sublingually). It’s the fastest and best way to deliver meds to your system instead of trying to absorb them through your acidic stomach.

I’ve been walking lately and working on my physical therapy exercises to make myself stronger and improve my balance, because I have a lot of little falls during the day. But this also makes me incredibly sore and tired. I just can’t win! Sore from being up, sore from being in bed all day. As soon as this arrived, I started with the doses.

In about two days’ time, I started feeling a marked difference. Now, I feel like I should be a skeptic and say that CBD oil seems like it’s too good to be true. Maybe it’s a placebo effect. But I am going to be very specific and say that I’ve been on the medical marijuana program and used the edibles and those still got me very loopy – unfortunately. I didn’t like them. I want to be in full control AND feel better. And I feel like I achieved that with Liberty Lixir. [If you want even better results, you can eliminate foods that cause inflammation and allergies, which I had to do out of necessity because my lips swelled up and I lost the entire lining of my mouth.] But I feel like my joint pain is down to about 30-40% of what it was before.

There were only two small things I had to get used to with this product: 1) The oil base. I’m not used to having straight-up oil in my mouth. 2) There is a hint of “green” taste that is particular to hemp/marijuana products that I always notice and others may not be bothered by – I’m just a super taster.

Liberty Lixir is something that I (and you) will want to continue using once it’s started. I can’t imagine not having it as part of my daily regimen now because I feel so much better. If you haven’t tried CBD oil for pain control before, this is a good hemp product to give it a whirl. This bottle lasted me approximately one month.

Who Wants To Live Forever?

1912 was an awfully long time ago. World War I didn’t even start until two years after that. Not everyone had a car, or electricity, or running water. The stock market crashed in 1929. The dust bowl and the great depression happened after that, and World War II.

But I’m getting way ahead of myself, so let me go back to 1912, because that’s the year that my Grandpa Ed was born. And now, maybe in a matter of hours and maybe in a few days, at the age of 105, we are going to say goodbye to him.

Imagine what it would have been like to see what he has seen. He grew up in a tiny rural town in a large family and didn’t speak English until around age 12. His family came from the area that is now known as Slovenia; then it would have been either Yugoslavia or Hungary, depending on whatever local wars had been fought and won or lost. 

When he was 17, the stock market crashed, and it was the beginning of the great depression. It was also the beginning of prohibition. He knew who was running booze out of the church basement, but he never got in on it. He just kept his head down and his mouth shut. The county where he lived all of his life is actually the moonshine capital of the U.S. and still has active backyard stills to this day, now that making your own hooch is back in vogue.

Grandpa really wanted to be a baseball player. 

Eventually he married my Grandma. We didn’t hear much about their courtship. They were far from the romantic types. They were married for 62 years when Grandma passed away, and by that time, they knew each other very well. Grandpa would sometimes turn off his hearing aids if he didn’t want to listen to Grandma – he’d call them his “ears.” After Grandma was gone at nearly age 92, most of the eight kids were sorting through old papers in the basement and they happened upon the most romantic note from Grandma to Grandpa from before they were married. It said something to the effect of, “I’ll be playing the organ at church next Sunday, I hope to see you. Sorry I was so crabby the other day.” 

With 8 kids to raise and a farm to run, Grandpa had to just be content with listening to ball games or reading about them in the paper instead of chasing his dreams. He really hated farming sometimes. He knew how to fix things out of necessity, but on many occasions he could be heard swearing and cussing up a storm at the tractors. One time he walked in on my mom and her three sisters while they were cooking and baking in the kitchen, imitating his ranting and raving. He didn’t think it was so funny.

Like with a lot of things, he had to do certain tasks simply because no one else would or wanted to. They raised chickens, pigs and cows. When I was very little, Grandma became attached to an orange-colored chicken who was quite social whom she named Henrietta, and that girl followed Grandma everywhere. Henrietta couldn’t be spared at butchering time. Grandma couldn’t do it, so Grandpa had to, and Grandma cried and cried.

Grandpa gave up driving around the age of 91. Since he lived way out in the country he could wait that long, but even then it was getting to be a stretch. But he still would take out this old Volkswagen Rabbit for a spin in the fields once in a while if he felt like it. After our Grandma died, one of our aunts lived with him for a few years and took over driving duties; following that, responsibilities were split between the siblings until at age 101 it was decided that he had to leave home and live in a facility.

After Grandpa got settled in the nursing home, he got on with playing blackjack.

This is a picture of Grandpa from yesterday along with my stepdad. The headphones are super amplifiers.
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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.)

I Know You Don’t Mean It

After I told the Go Stand In The Corner guy that I didn’t want to be his fantasy chat friend on Fet, he still tried to draw me in with more messages. So in the vein of Lin-Manuel, no means no means no means no means no…….well, anyway.

[Break for making arrangements to get the compounded medication to control my hives. I have to try one week of pills to see if I’m going to be allergic to the vegetable-based capsule they use for the powder. Total for 14 pills: $38. Not covered by Medicaid.]

Then I get another gem in my FetLife inbox, completely out of the blue, from a guy I’ve never had any contact with before in a town that is about an hour and a half south of Minneapolis:

Hey there beautiful. I just thought I would send you a text and tell you that you’re one great looking woman. In my eyes bald women are beautiful as I am bald myself. I know you say that you have health problems right now but I still wish that we could talk and hopefully meet as I will come to you as long as you let me. You seem like the type of woman that knows what she wants and I’m the type of guy that also knows what I want and that is you. I’m a gentleman that works too much but also enjoys beautiful women As You Are. I’m serious about meeting you as I would like to meet you now today tomorrow Sunday soon as possible as I don’t want no one else to steal you away from me. Give me a shout out if you’re interested in talking and we can go from there.

So, this is what my profile says:

I relocated from Phoenix back to my home state to be closer to family so they can take care of me during a serious health crisis. Feel free to message me but be aware that I cannot do any socializing of any variety right now. Respect my boundaries.

Now, is there anything in there that says, “Except you, guy. You know absolutely nothing about me including whether I even drink coffee but you know you’re going to make me happy for the rest of my life because you want to do dirty things to my bald head.”????

Send Up The Flares

It has been a really long time since I’ve logged into my FetLife profile. I didn’t realize it, but I had three messages waiting for me – one from about two months ago, another from four months ago, and the third from a full year prior. The one from a year ago I let slide. I mean, I did put in my profile that I don’t log on and that I’m going through a health crisis, and I can’t “play” in any way, shape or form. I did make a small adjustment to my profile, which alerted my friends and RELEASED THE KRACKEN.

One former spank party friend wished me well and told me that he had heard I moved to California. I replied that that wasn’t the case, I’m actually in Minnesota, taking care of some serious stuff. Then the guy who sent me a message four months ago hit me up again, this time with his instant message name and phone number. I replied that I was not looking to do ANYTHING, but that didn’t deter him; he said he would be willing to “give me a massage if I needed it.” Um, right, do bedridden women usually fall for that?

Then another guy whom I’ve played with at spank parties in Arizona hit me up to let me know he was actually currently in my city for work, and was I interested in getting together for a session? I groaned. This guy…he’s very, very, VERY focused on his kink. I like to have fun. It’s not the be-all, end-all thing for me. He carries a backpack with all of his tools. He actually has two pictures of me (not showing my face, only my red ass) on his profile. He’s totally into role playing, having me stand in the corner, punishment, the whole bit.

So I turned him down, because there is no fucking way I can do anything, including hang upside down, or put my stomach over his knees. The thought makes me cringe. I would be walking like a cat just getting out of anesthesia. And it would be painful, and not in a good way. So he asked me if I could be his chat buddy while he’s traveling for work: talk to him about discipline, spanking, corner time, paddling, etc. I’m rolling this around in my head, and first of all, this requires research. And time. And creativity. Probably some motherfucking Skype. A hairbrush (because wouldn’t you know it, I’m bald). It’s all I can do to peel myself out of bed to make food for dinner every day, and this guy wants me to put a lot of effort into keeping him happy and satisfied.

It takes a lot of effort to turn him down and I know I’m going to have to repeat myself. It’s not my first time. And there it is: “I’m traveling a lot and I don’t get the opportunity to do what I need to do.” So I have to drive it home for him: I’ve got serious stuff going on, I’ve got scar tissue in my brain and I have to lay flat 20-22 hours every day, I’m in pain, I can’t get another operation right now. His reply: “Okay, just know that you’re missed.” BTW, he has a wife and two little children at home. She knows about his kink and his attendance at the spank parties; I don’t know what else she knows because the travel job is news to me – but then again, we were never close.

This is also not the first time I’ve had to turn him down since I started having shunt failures. His kink always comes first. It’s fucking exhausting, man. But if y’all are interested in a pen pal, hit me up.

In other news, for about three weeks I’ve been dealing with persistent hives on a daily basis. I wasn’t quite sure what to do because of losing my rare disease doctor. However, I received a message from him this morning indicating that he put a script through to the compounding pharmacy for me that will (hopefully) help with my hives as a sort of last hurrah while I try to find another doctor. I also got the names of two doctors in the area who would be willing to communicate with him. The problem is that one is old as dirt and so probably won’t be practicing much longer, and the other one isn’t much younger and has a bad reputation for being a raging bitch. I need to sacrifice a chicken and do a dance around a fire or something.

Also today, I received a call back from the neurosurgeon’s office whom I originally saw two years ago when I relocated here from Phoenix. I called him as a last-ditch effort to try to be seen by him or someone else in the practice and get away from my current neurologist. She has been telling me that I don’t understand my symptoms – kind of along the same lines of telling me that even though I stubbed my toe, it’s really my nose that is hurting, ridiculous like that. So this neurosurgeon was kind enough to order a repeat lumbar puncture, which I’ve been begging for since December 2016. The lumbar puncture he ordered is “high volume,” meaning they will take at least four vials of cerebrospinal fluid. They will measure the opening pressure (like you would when you check the pressure on your vehicle’s tires) and then they will send the vials of fluid for testing of the proteins and check for bacteria. Getting this done will also relieve my symptoms for a few hours. He also agreed with me on my choice of neurologists within his group. 

My current neurologist’s justification for not ordering a current LP is this: Usually slit ventricles means that you are overdraining. I pointed out to her that my shunt failed 17 days after surgery in 2015 so I’ve got high pressure, and she witnessed my shunt opening up for about 30 seconds during my last appointment, and my paralysis went away, then came back. Then we read scientific journal articles together about adults with slit ventricles and shunt failures and symptoms. Then she said it only happened to some adults. I asked her why I couldn’t be included in that “some.” She told me it didn’t count because I wasn’t throwing up, I was only nauseated.

Fuck that. Spinal tap, here I come.