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.  

How Much Do I Owe The Swear Jar This Time?

A couple of weeks ago I got the last of my fillings repaired as part of the bigger, year-long, multiple visits to the dentist that were caused by me clamping my jaw in my sleep because of the pain in my shoulder and abdomen. I also had to make sure that they marked in my chart that I had slit ventricle syndrome and the tumor because they love to tip me waaaaaaaaay back in the chair and it really messes with the pressure in my head.

There was a mixup with my appointment and they got me back much later than my start time, which caused me to have to call my transportation to pick me up later; unfortunately, transportation had to leave me until 2 hours after I was done, which caused the fluid to build up a lot, which means I was hella uncomfortable and my vision was cut down quite a bit. But before that, I had a weird/comical/maddening exchange with the staff in the back.

I require four times the amount of numbing medication because my sodium channels don’t process pain meds correctly. Both of the teeth we worked on were in my upper jaw, so I ended up being numb up to my forehead. When they sat me up after I was patched up, they told me I could walk to Walmart down the road (as if! No way am I giving them my money!). I said no. They said I could then walk somewhere else. I again said no. They asked me why. In the best way I could with a very numb tongue/lips, I said, “I can’t theecuz oth wuth wrong with ny vrane.” The assistant, who was none too bright, said, “WHAT’S WRONG WITH YOUR VEINS??” I said, “No. Ny vrane. Vrane.” And I pointed at my head. The assistant dentist asked what was wrong, and I said, “I can’t do anyfing vat vill nake ny vlood mressure go umph. I cood have a stroke and nigh.” The assistant dentist asked what the doctors were doing to help. I said, “I can’t fine anyvun who vill take ny case. I’n lergic to da shuns. I need to fine stuff I wone vee lergic to.”

Then the dental assistant piped up and said, “Well, I don’t blame the doctors. I’m sure they don’t want to feel bad if it doesn’t work out for you.”

I shot her a look and said, “I cood die wifout helf. Da pressoo keefs goin’ uf in ny head and if I can’t get sunfing in to work, it vill kill nee.”

Without hesitating, she said cheerfully, “Well, I can see both sides.” Like we’re debating whether to have fish or chicken, instead of whether or not it’s better to kick the bucket to spare doctors’ feelings. She stuck with her “too bad for you” attitude.

At the end of December, my case was referred to the top neurosurgeon in the Minneapolis/St. Paul area after it was discovered that my brain had literally collapsed under the pressure, as well as started growing a tumor from the scar tissue that was left in from a previous shunt that is now about the size of a quarter. I know he got the radiology report that listed all of my symptoms. I know he got the impressions from the neurologist because he seemed to answer her question about whether I’m overdraining.

His reply was that my brain was fine and the tumor was no big deal. He also said the shunt isn’t overdraining. Now I’m not allowed to see him either. 

Here’s the deal: I know I’m not overdraining. If I were, I wouldn’t have high opening pressures every time they do a lumbar puncture. The overdraining assumption is strictly my new neurologist’s misunderstanding of slit ventricle syndrome – she’s trying to make my symptoms fit, instead of paying attention to what’s going on. Second, the brain tissue around the shunt and the tumor is turning to jelly. This isn’t normal and it’s a big deal. Third, the tumor is causing measurable cognitive damage. Fourth, and I’ll show you pictures, but my ventricles disappeared, and my brain has literally collapsed.

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I have new insurance that started on February 1st that comes with an advocate and a care coordinator, so I’m waiting for them to contact me, which is the norm. I smell a lot of research in my future for trying to figure out what I can try for the next shunt system, and I’m not looking forward to it, but I also know no one else will do it but me.

Can You Repeat That?

The last couple of weeks of December were a revelation.

I spent 20 years away from my family over the holidays, and I learned very early not to make a big deal out of the days we had off in November and December. When I’ve had serious boyfriends and we’ve lived close to their parents or grandparents, I’ve ended up at their houses, but if not, I’ve stayed at home and cooked whatever I’ve wanted to eat and overloaded on movies. A few times I’ve gone to friends’ houses – and one time that I did that, bringing my most recent ex with me, is a story still told today. My friend’s mom introduced us as, “Hi everybody, this is Chelsea, and this is ______, and they used to be boyfriend and girlfriend, and now they’re not, so I don’t know.” This was about 18 years ago, and when I reminded my friend, she started reminding her mother, and her mother finished the story, so yeah, it’s still fresh in her memory.

This holiday season really felt like a roller coaster. I received the results from the upright MRI. Just a few days after that, I received some medical records from a doctor I had seen one time for 20 minutes in August of 2015 when I was trying to find a primary care doctor who would take me on as a patient. I remember this one visit because the doctor had been so friendly, but I knew she was struggling with understanding the complexity of my conditions, and I had to repeat some information. I carried my previous records with me but she wasn’t interested in looking at them, she just wanted me to tell her again.

I was relieved at the end of the visit because it seemed like she was willing to take on the basic care like ordering my thyroid and cholesterol labs for my Hashimoto’s stuff. But then a week later I received a call stating that I had to find a new primary care doctor because she left the practice – she received notification that she passed an exam for a different field. I was floored. If you’re anticipating leaving, why take on new patients??

But the real kicker is getting her notes from that 20-minute visit now. Because I had to repeat myself, she wrote that I was “bragging” about my surgeries, and that I had Munchausen’s.

It’s really hard to read that in the same week that I received results saying that my brain has literally collapsed and I have tissue growing like a tumor and doing damage to my memory and speech. (Today I couldn’t remember why I called the county regarding picking out a vendor for medical assistance.) I still have a hard time talking about what’s going on, to get the words out. It’s serious. What’s happening is that the pressure in my cranium keeps rising, and it’s going to keep rising until it’s the same pressure as my blood pressure and I have a massive stroke and die. The two methods they have of treating it don’t work for me. First, the medication to reduce the CSF production has been proven not to make any difference for me. It’s been tried multiple times. Second, implanting another shunt isn’t going to work; I’m allergic to them all. I’m now at the point where I clog them and strangle them within days. I simply don’t have options at this point.

I also just got notes from a neurosurgeon from the University of Minnesota that I saw a year ago, from one of the guys I have nicknamed the Three Stooges. He was one of the three doctors who saw my MRI from July 2015 that had the beginnings of the slit ventricle syndrome and a smaller version of the tumor, and observed my fatigue, vertigo, facial droop, unsteady gait, and resolution of some of the symptoms when I tilted my head to move the fluid around. In my file he wrote that I “walk with a cane and can’t perform a tandem walk” but that I’m “fine.” He also stated that if anything changed, they would welcome me back to the neurosurgery department.

Fuck that. He’s not going anywhere near my brain when I’m unconscious. He obviously can’t handle it.

But the one bright light in all of this swamp of shit was that on December 27th, I received a voice mail from a case worker with the State of Minnesota. She simply stated her name and said that she approved my case for disability. As soon as I heard it, I immediately burst into tears. Being approved by the state doesn’t mean that I receive any kind of financial compensation, but it does assist me when I’m applying for housing – I can officially state that I’m disabled – and I also qualify for medical assistance as a disabled person instead of just a person living at or below poverty. It will also help to make my case stronger when it comes time for my hearing with the federal case, which I still don’t have a date for yet. My attorney thinks it’s still “some months” away.

The Good Doctor

The colder weather is creeping in, and the vines that have clung to the outside of my building and my window in particular have changed to a bright red, signaling shorter daylight hours. The school of thought used to be that the cold stopped the leaves from keeping their green; instead, now we know that it’s the actual length of daylight hours that makes the leaves change from green to gold and red and burgundy.
2016-10-18-14-14-03Now that we are staying inside more, bacteria are just rolling around and proliferating like little Tasmanian devils. The little jerks caught up with me. First I caught the flu, and after five days of that it turned into a double ear infection (the nurse practitioner said both ears were severely affected but neither had perforated, luckily). Three days later I developed bronchitis…because why not?

In the middle of that mess while I was running a fever, I kept my appointment with my GI doctor because he’s very much booked ahead of time and it would take me months to get another appointment. I desperately need my medication for acid reflux because missing it for even a few hours is agony, plus I needed to discuss my new MCAS diagnosis with him so he would understand the importance of keeping me on the medications. He mentioned at my last appointment in February that he wanted to wean me off of the medications because he didn’t want me to develop long-term usage side effects like osteoporosis. Now it looks like I’m just going to have to live with it and be the old lady hunched over the shopping cart.

I had forgotten between February and now how much I like Dr. Chaudhary. I’m even going to use his real name because that’s how much I like him – no need to hide him behind behind a stage name. He is one of the few doctors who has not sent me away and he is not intimidated by the complexity of my body.

Dr. Chaudhary knows my primary care doctor, and so we chatted about her for a moment. Then we talked about my new diagnosis, and I thought ahead of time to bring the paper copy of Dr. Afrin’s notes. I knew Dr. Chaudhary would have access to Dr. Afrin’s notes in the system even though they belong to two different practices, but because Dr. Afrin’s notes are INSANE – and they are – I thought it would be better to bring the paper so he could flip instead of scroll.

Dr. Chaudhary paused and looked at me and said, “Can I be honest with you? I want to be honest with you.” I told him yes, that would be fine. He said, “I don’t think that Dr. Afrin can help you with the problem with the CSF, sweetie.” I immediately started to get teary-eyed, but told him that that was what I was thinking too, it’s just a very emotional conclusion for me, and he said he understood. (Even as I’m writing this, I am crying.) Dr. Chaudhary said that Dr. Afrin will probably get a lot of the other stuff under control if we can get the right combination of medicine going. I obviously know the drill.

Dr. Chaudhary then asked me who my neurosurgeon was. I had to explain to him how I had tried to go through every healthcare system in Minneapolis/St. Paul, as well as the Mayo, as well as petition to be sent to Johns Hopkins and to the Cleveland Clinic, but was turned down every time (the doctor handed me a tissue). I also told him about the three doctors at the U of M who misdiagnosed me and how it affected my request with the NIH Undiagnosed Diseases Network turning me down, and how my primary care doctor didn’t advocate for me. He seemed especially troubled by the last bit because she was his former student and co-worker but he didn’t ask any further questions on that matter. I asked Dr. Chaudhary if he had any connections, but he said that the one person he would send me to went back to India about five years ago, so that was no longer an option.

This whole exchange about my ongoing neurological mystery took about 7 minutes. What makes him a good doctor – hell, a GREAT doctor – is that neurology is NOT his area. Dr. Chaudhary still talked to me as if I knew what I was talking about, and he certainly didn’t offer up lame diagnoses like myasthenia gravis which has nothing to do with me (ahem, University of Minnesota Neurosurgery and Neurologists!). A friend asked what made him a good doctor. To me, a good doctor isn’t one that is just empathetic or sympathetic, because quite frankly, I get that all day long. Dr. Chaudhary is invested. All I can say to that is you know it when you see it.

I got my scripts refilled. As he was leaving, Dr. Chaudhary said, “I will always remember you. You are my patient who is the opposite of the doll – you stand up and your eyes close, and you lay down and your eyes open! Take care, my dear. Do not give up. I know it is hard, but do not give up.

I wish all of my doctors could be like him.

FOOD FOR THOUGHT:When Good Intentions Aren’t Enough: Loving Each Other Better

FROM: AS I LIVE & BREATHE – Nikki Seefeldt, co-host of Sickadilly Chat

I’ve shared some of Megan Devine’s work before here in my blog in the past & I absolutely love her approach to dealing with pain & grief in life. I follow her on Twitter & w…

Source: FOOD FOR THOUGHT:When Good Intentions Aren’t Enough: Loving Each Other Better

I Heard The News Today

I woke up this morning to a message that was sent to me around midnight telling me, “I know you were friends with Bart [not his real name]; just wanted to let you know that he died after a confrontation with the police Wednesday morning.”

I wasn’t awake to chat back and forth, so I had to do some searching of news articles when I saw the message. There was actually quite an extensive write-up as well as video clips so I was able to get a complete picture from the law enforcement’s viewpoint of what happened.

The hard part was seeing pictures of his dwelling and recognizing the side of his building. Bart was so proud of everything that he did to fix his place up. I still remember walking through his door and smelling his split pea soup.

Bart and I weren’t close friends; in fact, the person that notified me of his death had known him decades longer than I had and was the reason we had become acquainted. But we had gone to the Renaissance festival as part of a big group, and we always ended up attending the same get-togethers. Bart was friendly and jovial, though he definitely had issues with drinking too much. He also could not control his impulses or anger; this certainly fed into a never-ending cycle of joblessness and financial uncertainty.

From what has been published in the stories online, he got a DUI on Friday night and was sent home in a cab rather than sent to jail. On Saturday night he drove by a deputy and shot him and prompted a manhunt/search. On Wednesday morning the sheriff’s department knocked on his front door and he shot himself.

The county sheriff is proclaiming this man to be an obvious participant in the bigger war on cops. I’m calling bullshit on this. Bart was in an all-out war on his own life.

Did he drink to get drunk? Always. He couldn’t get together with a group without drinking. When you’re middle-aged and you’re drinking every weekend (and I am guessing for him, every day), it’s obviously a problem. He tried his luck with dating, but he was always stuck in his 20’s there too, referring to women as girls and only taking pictures with the pretty random strangers with their boobs propped up, never really being less than insulting. Bart was a smart guy and had loads of certifications and degrees in the tech field, so he should have had no problem with landing well-paying jobs. In fact, when I was laid off, I visited his place and we chatted about our resumes and wages, and I was quite impressed with his in both areas – he could have afforded to buy my house two or three times over with his salary. But Bart had done and said so many crappy things in his workplaces that he had been blackballed in his current state, and finding work out of state was proving to be just as difficult.

The friends who were much closer to him had relayed stories about how in recent years and months, he would suddenly become angry and take off, or disappear for hours. If they were all out of town for a trip and following each other in their cars, Bart would somehow manage to leave the caravan and insist on his own route and get completely lost. He would become belligerent if anyone tried to reason with him.

Not that this means a whole lot, but he and I used to debate his support of Trump as a presidential nominee. Bart definitely had prejudices against people who were anything except white middle-aged American men.

So here is this guy who is doing everything he can to make his own life as terrible as it possibly could be – ruled by alcohol, void of love and understanding, built on a foundation of fear and ignorance. He shot another human being because he wanted to blame someone for something. He shot himself because he saw no other way out of the pit he dug.

I have a hard time thinking about him no longer being on this earth. I saw the destructive behaviors in him, but Bart was mostly friendly towards me – maybe because I didn’t have a long or involved history with him, or because I knew exactly what to expect. I hope that now his soul is finally at peace. I think about this often, especially since death seems to be around me a lot more this year, and I wonder if souls review their lives and their lessons like I think they must. (I hope that Bart can see the humor in me saying that my wish for him is to finally understand why Trump would make a terrible president.)

In fact, I wish I could interview all of the people I knew who crossed over in the past ten months and ask them what they have learned. What were they surprised by? What was the biggest reveal? Was it all worth it, taking on this human body and signing this contract?

Say It Isn’t So

Prince was actively seeking the help of opioid addiction specialists in the days leading up to his death, according to the Minneapolis Star Tribune. The morning his body was found, on April 21, he was scheduled to meet with Andrew Kornfeld, a staff member from Recovery Without Walls, a rehabilitation facility in California, according to…

via Will Prince finally get us talking about the prescription pill epidemic in America? — Quartz

Me and Prince

This morning after I took my bath, I wrestled into my purple bra and underwear, shoved my purple long-sleeved shirt over my head and torso and slipped my phone with its purple case into my pocket before heading out the door. I briefly considered taking my purple cane but decided against it because I knew I would be gone for about 20 minutes tops, which is the high end of how long it takes for the CSF to start pressing on my brain and making me wobbly.

Then the news started to trickle in: A dead body was reported at Paisley Park, Prince’s residence here in Minnesota. Just a week ago or less, there was a report that Prince’s plane had to make an emergency landing because he was experiencing some sort of health crisis, but he was resting at home comfortably. It was not a huge leap to assume the body was Prince’s, and it’s also not a huge leap to know that many of us locals are just plain sad about it. Of course he has a large following outside of Minnesota, but he was OUR guy.

Back when my dad was working on making a name for himself as a top-rate hair stylist in the very early 1980’s, he met Prince. My dad loved to name drop. He also thought Prince was a spoiled brat and didn’t hold back on saying so. Prince always traveled with an entourage (read: there was never a time he wasn’t a star). I later bragged to my classmates that my dad talked to Prince. I wasn’t afraid to name drop either.

The movie “Purple Rain” came out and the residents of Minneapolis/St. Paul (commonly referred to as the Twin Cities) were absolutely thrilled to be featured in a movie. First Avenue – “First Ave” if you’re cool – was forever galvanized as THE stage to play on thanks to “Purple Rain,” and who cares that the script was weak? The soundtrack was to die for! I mean, “Darling Nikki”?? Prince was so dirty! He actually talked about masturbation in a song and if any stations played it, the word had to be altered. How could such a short little guy get so many women to throw their panties at him?

When I went to the arts high school for my junior and senior year, I remember a boy who was trying to get into my pants saying to me, “Just give me a dark room and a Sam Cooke album.” I had no idea he was quoting a line from “Under the Cherry Moon,” another low-budget Prince movie that also starred Kristin Scott Thomas, at that point an actress largely unknown to American audiences in a film that didn’t have the commercial or musical success that “Purple Rain” did. I laughed when I finally did see the movie (on VHS tape!) because Prince found a way to infiltrate my love life as I’m sure was his intention all along.

In my senior year at the arts high school, I had a roommate who only played three albums: Nirvana’s “Smells Like Teen Spirit,” Weird Al (I can’t remember the name) and Prince’s “Diamonds and Pearls.”

I don’t remember which album the rumors were flying around for, but supposedly Prince actually recorded a woman getting off and put her “sounds” on a track. This was well before we could actually research anything on the internet. He is well-known for pushing artistic and cultural boundaries. I mean, who else would have a top 40 song called “Cream (Get On Top)”?

In 1996, my boyfriend at the time and I road tripped back from Albuquerque to Minneapolis and after a night of drinking with a friend and my sister, decided to check out Paisley Park. My friend had worked there previously as a security guard and offered to guide us with him driving his car and me driving my car just to show us where it was. Well, my boyfriend told me to pull into the driveway where the guard was stationed; when my friend saw what we were doing, he took off. My sister was pretty drunk in the back seat and pulled a blanket over her head, saying, “If I can’t see them, they can’t see me.” The guard greeted us, saying, “Can I help you?” My boyfriend leaned over me from the passenger seat and slurred, “Is this where Prince lives??” The guard straightened up and said, “I’m going to have to ask you to leave.” My boyfriend persisted, saying, “Can we take your picture??” The guard said again, “I’m going to have to ask you to leave.” In the meantime, my sister Heidi is quietly saying, “Oh god, oh god” in the back seat under the blanket. I backed up and managed to find our way out of the back roads of wherever we were; this was well before GPS and it was around 1:00 a.m. in a very rural area, and my friend was long gone, so it was no cake walk. Thank goodness I have a pretty good internal compass.

The same boyfriend and I relocated to Cincinnati and worked for a box office that was also a Ticketmaster outlet and managed to score tickets to two very different Prince shows. One was in Columbus, Ohio; the entire show started two hours later than it should have and we were already an hour away from home. Start time was supposed to be 8 but it was more like 10 and it was an opening act, then Prince came on at around midnight and played “Purple Rain” and we thought well shit, that’s it – but NO, he played for two more hours!!! The next day was hell because of course we had to work after taking an hour to drive home, but we got to see it. The next show we saw was very different, which was Prince playing with no opening act and playing all of his hit songs, but it was like one 2-hour medley – he had so many hits that he couldn’t play any of them all the way through. I was sitting behind Peter Frampton for that show.

After I moved here from Phoenix last summer, I saw something I never thought I would see, and that is Prince opening Paisley Park up to the public for parties. He has always been notoriously private. I hope that holding those parties brought him some joy. I never thought they would be his final act.

I feel like those of us (and yes, I say “us” because I count myself in this bunch) who do as much as we can as soon as we can somehow have a sense that our time on this earth will end at a much younger age than those who are much more methodical about how they spend their time. The moral of this story is to get your purple on and party like it’s 1999. We will miss this magical man and all of the soundtracks that he has provided for our lives.

You Are Not Alone

It was such a beautiful day – partly cloudy, unseasonably warm. Such a beautiful day that our uncle’s soul could not be contained by the body that was failing, so he took his last breath at 9:00 a.m., sharp. He was never really one to sit still for very long anyway.

My brother called me last night. I had already taken my last dose of meds and had stumbled into my pajamas, when he said, “Chels, you need to get here. He’s here at the hospital and he’s not going to make it through the night.” I clawed out of my pajamas and hurriedly put my clothes back on, and then called my sister. I knew as soon as I heard her voice that she would not be able to get out of bed because she was sick as a dog. She was heartbroken and asked me to say goodbye for her.

Texting with my brother, I advised him that my cab was on its way, and he told me that our uncle was not responding. I started shaking. I tried to remember to put random things into my purse, including my phone charger and my favorite cough drops. I put on extra deodorant (though I knew I was fighting a losing battle on that one – I sweat like crazy when the fluid builds up in my brain like it has been for the last 9 months while I’m upright).

After what seemed like an eternity, but was really only about 20 minutes, the cab arrived. He asked me where I was going. I told him the facility. He asked me how to get there, because he had just moved to the area from Phoenix. Great. The blind leading the blind. Then on the way he had to stop for gas (but he kept the meter running, saying it was at a “reduced rate”). I couldn’t believe it. I was crying and trying to explain to him that I wasn’t sure if I would make it to the hospital on time. Then he started quizzing me on how old my uncle was and if he was sick for long. I’m not new, I know where this line of questioning leads: some stranger-danger jackass is going to tell me that he lived a long life (a week and a half short of reaching 65) and that if he was sick a long time, then I shouldn’t be sad.

But I am sad. You see, my uncle and I missed out on two decades of knowing each other. When he found out I was sick, he began slowly reaching out to me. But before that, we had had no contact. Twenty years ago, his brother – my dad – died, and as people do when they endure a major life event like that, we acted our worst. First, we fought over what Dad should wear to be buried. Whenever he wasn’t working, Dad was in either pajamas or very grubby outdoor clothes, and we kids and our step-mom said we wanted Dad to be buried in his (very nice) favorite pajamas. Our uncle put his foot down and said he should be buried in a 3-piece suit, because otherwise, what would their clients think? (Dad and our uncle along with their close friend owned a successful business.) I told him that the funeral wasn’t for the clients. Eventually we settled on the favorite pajama pants and a nice shirt.

Second, our uncle took me aside and told me, “I know I wasn’t very interested in you when you were growing up. I figured you didn’t really need me because your dad was so involved in your life. Now that he’s gone, if you ever need advice, you can come to me.” I was 22 at the time and already had been living away from home for about 5.5 years, so I felt as if he really missed the boat on being part of my life. Mostly I was hurt that he admitted what he thought about me. I was raw from dealing with the sudden loss of my dad and had no support like everyone else who was there and paired up like they were going on Noah’s Ark – no boyfriend and no spouse. I did what I had perfected long ago, and that was to shut down emotionally. 19 years have passed since we buried Dad and I moved around the country.

Slowly last year my uncle’s messages started to trickle in. He even made a donation to my YouCaring page to help me with expenses during my Magical Medical Mystery Tour. When he found out I was moving back to Minnesota, he asked if we could spend some time together. So the week after all of my belongings arrived and were still taking over my living room/bedroom, we squeezed a chair in between the boxes and the wall so that he could talk to me while I laid flat on the bed. I was mid-sentence in giving him a generic update on what was happening with me when he grabbed my hand and said while fighting back tears, “I’m sorry. I’m so happy to see you.” 

Now that I’m 20 years older and have contemplated life, death and illness, it was all I needed to hear. I repeated his words back to him. He leaned over from the chair to hug me tight and we cried. It’s the crying that you do when you see life with such clarity and you know that your time is limited. It’s the crying that you do when you’re not afraid of death but you are afraid of not being able to make wrongs right before it’s time for you to shed your body. He had stage IV squamous cell carcinoma and didn’t know how long he had until he could no longer function. We managed to have a few more visits before Christmas; after Christmas, he developed pneumonia and was sentenced to bed rest and constant care by his new girlfriend.

Last night a group of people hovered around his hospital room, all red-eyed and occasionally sadly smiling over the sharing of memories. I thanked his girlfriend for taking such good care of him; she went home to rest. Eventually the visitors dwindled down until it was my brother and I, our cousin and his best friend, our uncle’s ex-wife and our uncle’s best friend/long-time business partner. My nighttime meds were kicking in and making me extremely sleepy and I desperately needed to lay down to take the pressure off of my brain, so someone very kindly set up a cot for me in the family waiting room. My brother opted to sleep in the chairs. Everyone else stayed in the room with our uncle. I figured that we would hear sometime in the night that our uncle had passed.

I woke up and stumbled to the community bathroom and tried to make myself presentable. My eye makeup was smeared to raccoon status. My deodorant indeed was a huge disappointment. I stopped pretending to care and instead made my way to our uncle’s room. Surprisingly, only the best friend was there watching over our uncle – my uncle’s son, his best friend and the ex-wife had gone home to change clothes and make sure the dog was taken care of. My brother was still asleep in the family room and so the best friend/business partner went to get coffee while I stayed at my uncle’s bedside.

I used my time with him to sing. Sometimes it was impossible to get the notes out because the knot in my throat strangled me with grief. He wasn’t conscious and was fighting to take in air while he slowly drowned in his lungs. It was painful to watch because our once super-fit uncle had fluid pooling in his abdomen and lungs, prompting him to keep his mouth gaping open while he worked just as hard to push the air out as he did to get the oxygen in. Singing was all I knew to do because I felt helpless – I was coming into this process late and didn’t know what his wishes were as far as pain control went.

When my brother and my uncle’s friend entered the room, they both were concerned about the amount of work it was taking for my uncle to try to get air into his lungs. He seemed to be clenching his fists a bit and his shoulders were also working themselves forward and back in an effort to try to take in oxygen. The three of us decided that we wanted him to be comfortable, so I found the nurse and asked her if we could get assistance with pain medication. We talked about the effect that upping his meds would have on him, which was mainly depressed breathing. I was concerned that our uncle’s son wouldn’t make it back to the hospital in time. My sister and her husband were also trying to get there to say goodbye. But we went ahead and had the orders changed so our uncle could receive his meds more frequently to aid him in dying in comfort. We didn’t know when that would happen, because he survived another night when he should have been gone, really.

The nurse gave him painkillers in his IV and some drops under his tongue; he seemed to settle down and labored less to take in air. I stepped out of the room for about three minutes to make a phone call. When I returned, his color had changed completely. Our uncle was taking in small, shallow breaths, and his skin had taken on an unnatural tone of yellow with underlying grey. My brother held one hand while I held the other, and our uncle’s friend stayed at his feet. We all told him we loved him, we all wanted him to feel no pain, and it was okay.

I watched the pulse at his neck as it slowly ebbed like a far-off ripple on a lake. Finally, I put my fingers to his carotid and confirmed there was no pulse. The friend went to the nurse’s station to call the nurse and resident into the room. Our uncle had left, to join his mom and dad, his brother and sister, and probably my sister, as well as countless other souls who were no longer caged by their bodies. No more pain, only flying free.

My dad (L) and my uncle (R), playing around with their mom’s pantyhose. 

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Now You See Me

About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis