It's been a couple months again. Keeping up with writing just doesn't take the priority that keeping up with life has. It's been busy, most of it good. In my usual fashion, I've chosen to just keep living, be it so with more intention than in my youth. Ah youth...we decided after a victorious year and some struggles that we were due for our first family vacation. It was touristy and the kids enjoyed it throughly. Taking 7 people on vacation is no easy task. The preparation is ridiculous even for someone like me that loves preparing (you're always preparing. What's the matter Colonel Sanders, Chicken?) Vacation was a reprieve from many of the everyday reminders of our set of challenges. We were a normal family. We were distracted but engaged in something new and wonderful. It was exactly what we needed before this last month of the summer as the pace quickens again.
Here we are a couple weeks out from seeing genetics and it's nerve wracking. These trips are never easy. Hours of testing and updating records, one room to the next, the drive...it's exhausting.The kids and I don't see the same geneticist so it's multiple trips to the university hospital but well worth it for the care we receive. The difference between diagnosis and prediagnosis has been the care. As I've said before my general practitioner is fantastic, but when you start adding specialists that know about your condition and how to treat it, it becomes that much easier to manage. The time sink is incredible. And while the preparedness required is daunting to some, we have figured out a thing or many about making life more manageable for a home with 4 vascular EDS people. You never know when when of us will get a debilitating migraine, crushing fatigue, immense depression, joints so unstable and rubbed raw that just existing is painful, seizures, when my organ failure is going to be over the threshold - which is exactly what happened this week.
As per my normal schedule, I had an ER trip a couple days ago. It really is almost a quarterly event. When presenting in the ER with tachycardia, abdominal pain, bilious vomiting, dehydrated and a history of cardiac arrest and strokes - they take you seriously. So serious that the ER doctor asked me what needed to be done and he called to consult another doctor on my condition. Have you ever had an ER doc ask you what treatment works and how they should proceed?! I was relieved that I didn't have to explain it. I was a little busy projectile vomiting like an automatic sprinkler. Dysautonomia and pancreatitis gave me a good go of it but we were able to reset my body after about 6 hours of throwing the heavy stuff at it. They gave me fentanyl twice and I didn't even ask for it! What is this now? Twice in a row. Some of these things worry me, like a lot. It would be a lie if said otherwise. There's no playing it cool for anyone here. That's the nice part of just quietly going about my life. There's not even a gossamer veil on the truth for the sake of shielding others and I'm damn sure not writing this to impress anyone. At times, it's at best an outlet to purge things before they rattle around in my noggin too long.
I was given palliative care a year ago and a 12% chance of making it 6 months multiorgan failure will do that 🙄. Last year was hell -managing severe PTSD while fighting for my life and fighting for my kids as well. Sometimes it's hard to believe how many times we have beaten the odds and not become a statistic. Even triumphing over that, some nights sleeping is next to impossible. Wildly unbalanced in my endocrine system means adrenaline surges when I should be sleeping (@ you 2:30am) PTSD leaves me unable to feel safe when everyone else is asleep, so the threat based Center of my brain stays activated and engaged when all I want to do is rest. Abuse does horrific things to people.
Speaking of sleep interruption and abuse...Tonight my daughter sleeps on the couch just outside our room because the nightmares have gotten too bad again. My heart breaks for her. The paralyzingly nightmare that left her shaken and us sitting up until the wee hours of the morning put her over the edge and she is trying to regain control over her fear again. I guess being beaten and held hostage for 2 days, being told she would never get away and that they had spies everywhere is still not far enough away a year later for her either. I wish we could put light years in distance from it for her. While she is ashamed of her struggle, I can't wait for the time when she realizes how amazing and strong she is. She sees me as this superhero - willing to fight any injustice for my family, super human like powers of resilience, unwaivering conviction, the one who rescues her. Maybe I am, it's not my decision how others see me. All superheroes have flaws to overcome, a weakness or some might even say they have some red on their ledger to erase *nod to you, BlackWidow* we need everyday superheroes - people that inspire us, people fighting for good in our lives, people who want the best for us and are willing to give their all to protect us. I can't think of a better description for a parent than an everyday superhero. I've definitely been called worse. For now, I call myself tired.
Goodnight ~ Ande
Tuesday, October 10, 2017
Tuesday, April 25, 2017
Painsomnia
Painsomnia is heavily used term in EDS groups. It's almost as straightforward as it sounds, almost. Yes, pain so terrible that you can't sleep no matter how exhausted your body is. What isn't included in the synopsis definition is the deep amount of anxiety that brings. So as I begin this, it's 4:49am and I haven't slept since 6 the prior morning. Being that I have a doctor appointment in 3 hours, I don't even dare attempt sleeping because waking up off of a couple hours of sleep is even worse than no sleep. There's a great amount of certainty that my circadian rhythm is a speed metal/elevator jazz mashup with some strange Phish like noodling paired with a drum core line. Sounds fun, huh? Even Stella count get her groove on to that. The real anxiety is what the painsomnia is a manifestation of. Ooooohhhhh now we get to the really juicy part - painsomnia or insomnia for me are very frequently paired with cardiac events. So I'm still riding this elevated blood pressure wave that kicked off hardcore Saturday afternoon.
Graphic detail time: because of dysautonomia my body can "forget" how normal automatic things are supposed to function...like all of them. I vascilate between extreme constipation (dysmotility) and food rejection where I either violently vomit multiple time or have sudden bowel movements (gastroparesis) when one autonomic function messes up, others usually follow suit. Another form of dysautonomia I have is called POTS (postural ortho static tachycardia syndrome) so Saturday when one autonomic function was upset (bowel movements) my other autonomic functions started failing as well. I was dehydrated to begin with which I'm normally very good about but I wasn't feeling well so I was sleeping instead of taking in fluids. My platelets have been particularly low Saturday is my lowest reading yet, so bloodflow isn't what it should be. My blood is very thin, platelets are what thicken it up. Since my platelets are under a hundred, my body gives me pretty good clues like the petachie I get, lethargy, pain in my abdomen, extremely easy bruising...so there's another autonomic function gone wrong. I have ITP idiopathic thrombosis pupura aka my spleen sees my platelets as a threat and so they are constantly at battle. In my mind this plays out like the scene from West Side Story when the Sharks and the Jets are in a dance/snap fight. Lucky me, my dysmotility was done but gastroparesis kicked in. Which makes the scene for this lovely mental image. Dysmotility + gastroparesis = suddenly, urgently and definitely painfully I was shitting large boulders. I was honestly afraid for a minute or two that one of those boulders was going to break my toilet and send porcelain shards flying through the bathroom. But instead it knocked my heart out of rhythm. I started tachycardia almost immediately. I could feel my jaw tighten and my younger swell and knew it was only a matter of time. Two sublingual zofran later and cut to me doing my very best Linda Blair impression. Zofran didn't even touch it. Benadryl? Threw that up too. After 3 hours of chest pain, dizziness, nausea, abdominal pain and shortness of breath it was time to suck it up and go to the ER.
We get to the hospital and I triage in. From what I'm told my lips were blue but I could kind of see my hands and knew they didn't look normal. Pulse ox of 81 and dropping to 76. I knew what this meant. I was having another POTS attack. My bp was still pretty elevated. I got into a room and they were setting up an IV and asking me medical questions. When the nurse and doctor asked what I need, I asked for fluids because I knew how dehydrated I was. That's it - fluids. What my nurse came back with was a bag of ringers solution, pain and antinausea meds and three warm blankets. Wow! I never knew that could be a thing! I didn't ask for pain meds or nausea meds but the doctor determined that's what was appropriate 🙌🏽 My nurse was unfamiliar with EDS and asked a lot of questions, my doctor was pretty well versed and also asked a lot of questions but wrote things down as well. Once again, a medical professional truly had pity for me. Pity kind of sucks and I would really rather not have it, if it's all the same to you. But it was clear that nurse was shook by my medical history and apologized that I had so many medical problems. All in all I'm not sure which of us impacted the other more. I've had good and bad experiences in the ER, that happens when you have a genetic condition but never have I walked away knowing my approach changed them. That nurse was stunned that I treat others so nicely even when in pain and the only real pain complaint they got was when pushing on me. It's ok to be sick and sad. It's ok to be sick and happy. It's ok to be sick and mad. EDS has taken a lot from me - mobility, physical security, financial stability but I have developed something wonderful because of it too - resilience.
Resilience has become an all important component to my life. There is never a 100% certainty of what time we are given here but statistics like to remind us of possibilities. Another cardiac event and a few subsequent ones has lead to more testing and of course that men's results. Results from last time: I don't have Cushings but I do have an endocrine disorder and will see a specialist for that at some point. Saturday's results I didn't get as lucky on. I'm back in renal failure again and I'm in stage 3, grade2 liver failure. Add a pancreas that isn't functioning properly and a heart and lungs too. What do you get? That's right! Multiple organ failure...again. Statistics say I have a 12% chance of surviving a year. My resilience says I have a lot longer
Graphic detail time: because of dysautonomia my body can "forget" how normal automatic things are supposed to function...like all of them. I vascilate between extreme constipation (dysmotility) and food rejection where I either violently vomit multiple time or have sudden bowel movements (gastroparesis) when one autonomic function messes up, others usually follow suit. Another form of dysautonomia I have is called POTS (postural ortho static tachycardia syndrome) so Saturday when one autonomic function was upset (bowel movements) my other autonomic functions started failing as well. I was dehydrated to begin with which I'm normally very good about but I wasn't feeling well so I was sleeping instead of taking in fluids. My platelets have been particularly low Saturday is my lowest reading yet, so bloodflow isn't what it should be. My blood is very thin, platelets are what thicken it up. Since my platelets are under a hundred, my body gives me pretty good clues like the petachie I get, lethargy, pain in my abdomen, extremely easy bruising...so there's another autonomic function gone wrong. I have ITP idiopathic thrombosis pupura aka my spleen sees my platelets as a threat and so they are constantly at battle. In my mind this plays out like the scene from West Side Story when the Sharks and the Jets are in a dance/snap fight. Lucky me, my dysmotility was done but gastroparesis kicked in. Which makes the scene for this lovely mental image. Dysmotility + gastroparesis = suddenly, urgently and definitely painfully I was shitting large boulders. I was honestly afraid for a minute or two that one of those boulders was going to break my toilet and send porcelain shards flying through the bathroom. But instead it knocked my heart out of rhythm. I started tachycardia almost immediately. I could feel my jaw tighten and my younger swell and knew it was only a matter of time. Two sublingual zofran later and cut to me doing my very best Linda Blair impression. Zofran didn't even touch it. Benadryl? Threw that up too. After 3 hours of chest pain, dizziness, nausea, abdominal pain and shortness of breath it was time to suck it up and go to the ER.
We get to the hospital and I triage in. From what I'm told my lips were blue but I could kind of see my hands and knew they didn't look normal. Pulse ox of 81 and dropping to 76. I knew what this meant. I was having another POTS attack. My bp was still pretty elevated. I got into a room and they were setting up an IV and asking me medical questions. When the nurse and doctor asked what I need, I asked for fluids because I knew how dehydrated I was. That's it - fluids. What my nurse came back with was a bag of ringers solution, pain and antinausea meds and three warm blankets. Wow! I never knew that could be a thing! I didn't ask for pain meds or nausea meds but the doctor determined that's what was appropriate 🙌🏽 My nurse was unfamiliar with EDS and asked a lot of questions, my doctor was pretty well versed and also asked a lot of questions but wrote things down as well. Once again, a medical professional truly had pity for me. Pity kind of sucks and I would really rather not have it, if it's all the same to you. But it was clear that nurse was shook by my medical history and apologized that I had so many medical problems. All in all I'm not sure which of us impacted the other more. I've had good and bad experiences in the ER, that happens when you have a genetic condition but never have I walked away knowing my approach changed them. That nurse was stunned that I treat others so nicely even when in pain and the only real pain complaint they got was when pushing on me. It's ok to be sick and sad. It's ok to be sick and happy. It's ok to be sick and mad. EDS has taken a lot from me - mobility, physical security, financial stability but I have developed something wonderful because of it too - resilience.
Resilience has become an all important component to my life. There is never a 100% certainty of what time we are given here but statistics like to remind us of possibilities. Another cardiac event and a few subsequent ones has lead to more testing and of course that men's results. Results from last time: I don't have Cushings but I do have an endocrine disorder and will see a specialist for that at some point. Saturday's results I didn't get as lucky on. I'm back in renal failure again and I'm in stage 3, grade2 liver failure. Add a pancreas that isn't functioning properly and a heart and lungs too. What do you get? That's right! Multiple organ failure...again. Statistics say I have a 12% chance of surviving a year. My resilience says I have a lot longer
Friday, March 10, 2017
Knock, knock
I'm about to tell you who's there, even if it has been a few years since opening up. This feels weird after so long, but there are some events that I'm going to need to keep track of and I hope you don't mind me indulging in a somewhat public way of where I am and what's happened and to become. So greetings and welcome to my update.
(Disclaimer: I like cursing. The fuck you say! I do say the fuck!)
The warnings of what alcohol does and how the children felt meant nothing. There was a messy first involvement with DHS and the children's father abusing them. They stopped wanting to go due to violence and alcoholism, often witnessing or being a victim of the abuse. Since we didn't alter custody and I refused to send them back, I did 6 days in county jail and got 18 counts of contempt of court(6 days and a few thousand dollars for what was ultimately the safety of my children was well worth it and I'm not ashamed of it. Any parent who loved and believed their children would do the same). Because I wouldn't send my children back to their abuser. After that I had no option but to send them bac, not doing so meant risking custody and that wasn't a gamble they could afford me to take. Reluctantly, I sent them back and the second weekend the kids complained once again of drinking and driving. He didn't like feeling his children were snitches and the third weekend in he assaulted my youngest daughter who shook and wept, begging me not to have to go to his house that evening. Our intuition and fears were justified. We took her directly to the local children's hospital and from there we ended up at a sentencing of her father pleading guilty to child abuse a week ago. Five year no contact order has been a relief and hopefully not one we will have to use. This is the most disgusting and deplorable case of "I told you so" but the doubt always goes to the victim and not the accused, right? Pardon the hardest ryeroll I can muster. Notice I give no details, nor will I- this wasn't premeditated or motivated and details aren't public business. What's said can be found on public sites. We are choosing to move ahead with our lives and stop living in fear and pain. We are hoping for peace and respect of boundaries, just to be left alone about it. Please respect that given our aim is for peace, I will say there's been a great deal of suffering as a family and hope that outside of this onetime address about it will be the only. Aka- don't ask because I won't tell.
Moving on to what will be the focus from here on out...my personal journey as we navigate through rare disorders that are also taking the focus of my life. I started writing a book but clenching the pen became to painful so pardon any autospell errors 😬 For years I've been in and out of terminal status with a mystery set of diagnosis and issues. My print out of current issues at the doctor is 4 pages long now. Not the summary. Not my vitals. Just. The. Diagnosis. Upon getting a shot in my hip last December, the ARNP was closely studying me: examining my skin in my hands, asked me to try a couple of things that could bend like my fingers and if I could palm the floor (everyone can't do that?!) mentioned my Raynauds and asked about a few other things. She said my increasing joint pain and other spikes in medical issues were the result of my EDS advancing. Pardon me?! My what? A couple of years prior my rheumatologist diagnosed me with Hypermobility Joint Syndrome and all of my other issues were part of that disorder spectrum called Ehlers Danlos Syndrome and didn't I already know that. I left confused but also a bit relieved. I had a stroke and heart attack two years ago, a couple of trans ischemic attacks, a ruptured gallbladder, renal and liver failure, a bleeding disorder, have essential tremors, Raynauds, Fibromyalgia, degenerative joint disease, dystonia, have strange sensitivities that we now know is Mass Cell Disorder, a whole host of others and now this weird sounding thing. Ehlers Danlos is a rare genetic connective tissue disorder. Connect tissue pretty much makes up most of our body, like 80% so it can potentially fuck up your everything, and it has with me. I thought that the wait for the geneticist was going to be the worst part, and so far it is. Getting a diagnosis after suffering your whole life, being called a whiner or a hypochondriac, being told it's all in my head or I'm doing it for attention (Please tell me who the fuck the magical bastard is that can dangerously lower their platelets at will) Years of knowing it was all something tied together. A month before 38 I met myself for the first time.
When I say I have a good care team, I mean it. I feel spoiled after such a long time trying to find a doctor that was up for the challenge I medically am. My general practitioner is an Internal Medicine Specialist that teams with an ARNP. Many of the other medical professionals I know see him - doctors, dentist, specialists and even SEVERAL nurses. This guy is a damn superstar in my eyes, and his ARNP has to be one of the most compassionate people to walk this earth. She has downright cried and apologized that I have to go through so much. Seeing these two not only want to treat me but to treat me with validation is amazing. So when I take notice that they are increasingly worried, suffice it to say, there are some nerves. The amount of testing and lab work, doctor appointments and therapy appointments (once again something I'm not ashamed of dealing with your mortality and chronic illness is devastatingly difficult please don't try this at home) travel time and expense, research, recovery time for any number of illness related reasons is daunting. Recovery is unpredictable, sometimes it's an hour nap and a snack to be functional and other times it's crushing fatigue and hypertensive cluster migraines that leave me incapacitated for days, laying on the floor of the shower bawling and hoping my head doesn't explode. The latter has been a precursor to some of the most frightening experiences of my life. You don't know fear until THAT moment and I've had a few. It was looking promising treatment wise until the headaches wouldn't quit. I belong to a couple of support groups and have had several good suggestions. I saw myself mirrored in so many of them that it felt impossible but then there was one that fit so perfectly.
So just when we thought we were at a plateau of diagnosis for a bit, the obvious problem hit us right in the face. It was a routine follow up and I just wanted to run the thought by my doctor to see if I was reaching or if it was a valid concern. When he asked what was new and what we should look at this visit (yes, this doctor is for real) I asked what he thought about Cushings. Said I felt like I had some of the Classic symptoms even the and I swear it was in unison "the buffalo hump". He said he had never personally diagnosed someone but had patients come to him after they were already diagnosed. That said, I was the best candidate he had ever seen and although it was rare we were going to immediately start testing. Blood draws that morning and a 24 urine test to take home. We should see results by a week or so. Blood work was easy enough, a good phlebotomist is hard to find and even harder for someone with vascular EDS. The 24 hour urine test was annoying and at times scary. Every single drop of pee for 24 hours was to go in this jug, which was poured in by one of those weird toilet hat specimen collectors...gross, not what I wanted to keep in my fridge. The 24 hour test was an awful constant reminder of the whirlwind conversation in the doctors office. My normally reserved and conservative approach doctor prepping me for MRI and CT Scan, an endocrinologist and neurosurgery because it seemed like a tumor on my pituitary gland. The pituitary gland is right behind the nose. It was startling and I'm still shook by the look on his face and frantic preparation. Not his style.
My nature is to be an information hoarder. The countless hours of research on sleepless nights and empty days filled every crevasse for a time before it was emotionally too encumbering. Time to talk things through and start making plans. Neurosurgery?! Spinal fluid leak?! Weeks of recovery without much cognitive function, possibly having to relearn basic things. Fuck. Fuck. Fuck. I'm going to have to go through those surgery doors hoping I continue to eat vegetables and not become one. This is the epitome of overload. If it's surgery or radiation, whatever but I want and need to see my oldest graduate before I make any decisions.
The amount of panic I hold back on a daily basis nears a metric ton. I reserve myself these days. I'm private, rarely go out and if so it's to have some BBQ with the family or to get the kids some clothes, every now and then catch the local AA baseball team, hit up the local swimming pool in the heat. Our yard and landscaping take up most of my energy. I'm hoping I can get some major work done so that we don't have to do as much when we grow old (please, Divine Energy let me grow old with my husband and kids) I don't know what I get allowed but I'll fight for every second. There's more of a mark to be left on this world and I'm not done. For now we are just waiting...
(Disclaimer: I like cursing. The fuck you say! I do say the fuck!)
The warnings of what alcohol does and how the children felt meant nothing. There was a messy first involvement with DHS and the children's father abusing them. They stopped wanting to go due to violence and alcoholism, often witnessing or being a victim of the abuse. Since we didn't alter custody and I refused to send them back, I did 6 days in county jail and got 18 counts of contempt of court(6 days and a few thousand dollars for what was ultimately the safety of my children was well worth it and I'm not ashamed of it. Any parent who loved and believed their children would do the same). Because I wouldn't send my children back to their abuser. After that I had no option but to send them bac, not doing so meant risking custody and that wasn't a gamble they could afford me to take. Reluctantly, I sent them back and the second weekend the kids complained once again of drinking and driving. He didn't like feeling his children were snitches and the third weekend in he assaulted my youngest daughter who shook and wept, begging me not to have to go to his house that evening. Our intuition and fears were justified. We took her directly to the local children's hospital and from there we ended up at a sentencing of her father pleading guilty to child abuse a week ago. Five year no contact order has been a relief and hopefully not one we will have to use. This is the most disgusting and deplorable case of "I told you so" but the doubt always goes to the victim and not the accused, right? Pardon the hardest ryeroll I can muster. Notice I give no details, nor will I- this wasn't premeditated or motivated and details aren't public business. What's said can be found on public sites. We are choosing to move ahead with our lives and stop living in fear and pain. We are hoping for peace and respect of boundaries, just to be left alone about it. Please respect that given our aim is for peace, I will say there's been a great deal of suffering as a family and hope that outside of this onetime address about it will be the only. Aka- don't ask because I won't tell.
Moving on to what will be the focus from here on out...my personal journey as we navigate through rare disorders that are also taking the focus of my life. I started writing a book but clenching the pen became to painful so pardon any autospell errors 😬 For years I've been in and out of terminal status with a mystery set of diagnosis and issues. My print out of current issues at the doctor is 4 pages long now. Not the summary. Not my vitals. Just. The. Diagnosis. Upon getting a shot in my hip last December, the ARNP was closely studying me: examining my skin in my hands, asked me to try a couple of things that could bend like my fingers and if I could palm the floor (everyone can't do that?!) mentioned my Raynauds and asked about a few other things. She said my increasing joint pain and other spikes in medical issues were the result of my EDS advancing. Pardon me?! My what? A couple of years prior my rheumatologist diagnosed me with Hypermobility Joint Syndrome and all of my other issues were part of that disorder spectrum called Ehlers Danlos Syndrome and didn't I already know that. I left confused but also a bit relieved. I had a stroke and heart attack two years ago, a couple of trans ischemic attacks, a ruptured gallbladder, renal and liver failure, a bleeding disorder, have essential tremors, Raynauds, Fibromyalgia, degenerative joint disease, dystonia, have strange sensitivities that we now know is Mass Cell Disorder, a whole host of others and now this weird sounding thing. Ehlers Danlos is a rare genetic connective tissue disorder. Connect tissue pretty much makes up most of our body, like 80% so it can potentially fuck up your everything, and it has with me. I thought that the wait for the geneticist was going to be the worst part, and so far it is. Getting a diagnosis after suffering your whole life, being called a whiner or a hypochondriac, being told it's all in my head or I'm doing it for attention (Please tell me who the fuck the magical bastard is that can dangerously lower their platelets at will) Years of knowing it was all something tied together. A month before 38 I met myself for the first time.
When I say I have a good care team, I mean it. I feel spoiled after such a long time trying to find a doctor that was up for the challenge I medically am. My general practitioner is an Internal Medicine Specialist that teams with an ARNP. Many of the other medical professionals I know see him - doctors, dentist, specialists and even SEVERAL nurses. This guy is a damn superstar in my eyes, and his ARNP has to be one of the most compassionate people to walk this earth. She has downright cried and apologized that I have to go through so much. Seeing these two not only want to treat me but to treat me with validation is amazing. So when I take notice that they are increasingly worried, suffice it to say, there are some nerves. The amount of testing and lab work, doctor appointments and therapy appointments (once again something I'm not ashamed of dealing with your mortality and chronic illness is devastatingly difficult please don't try this at home) travel time and expense, research, recovery time for any number of illness related reasons is daunting. Recovery is unpredictable, sometimes it's an hour nap and a snack to be functional and other times it's crushing fatigue and hypertensive cluster migraines that leave me incapacitated for days, laying on the floor of the shower bawling and hoping my head doesn't explode. The latter has been a precursor to some of the most frightening experiences of my life. You don't know fear until THAT moment and I've had a few. It was looking promising treatment wise until the headaches wouldn't quit. I belong to a couple of support groups and have had several good suggestions. I saw myself mirrored in so many of them that it felt impossible but then there was one that fit so perfectly.
So just when we thought we were at a plateau of diagnosis for a bit, the obvious problem hit us right in the face. It was a routine follow up and I just wanted to run the thought by my doctor to see if I was reaching or if it was a valid concern. When he asked what was new and what we should look at this visit (yes, this doctor is for real) I asked what he thought about Cushings. Said I felt like I had some of the Classic symptoms even the and I swear it was in unison "the buffalo hump". He said he had never personally diagnosed someone but had patients come to him after they were already diagnosed. That said, I was the best candidate he had ever seen and although it was rare we were going to immediately start testing. Blood draws that morning and a 24 urine test to take home. We should see results by a week or so. Blood work was easy enough, a good phlebotomist is hard to find and even harder for someone with vascular EDS. The 24 hour urine test was annoying and at times scary. Every single drop of pee for 24 hours was to go in this jug, which was poured in by one of those weird toilet hat specimen collectors...gross, not what I wanted to keep in my fridge. The 24 hour test was an awful constant reminder of the whirlwind conversation in the doctors office. My normally reserved and conservative approach doctor prepping me for MRI and CT Scan, an endocrinologist and neurosurgery because it seemed like a tumor on my pituitary gland. The pituitary gland is right behind the nose. It was startling and I'm still shook by the look on his face and frantic preparation. Not his style.
My nature is to be an information hoarder. The countless hours of research on sleepless nights and empty days filled every crevasse for a time before it was emotionally too encumbering. Time to talk things through and start making plans. Neurosurgery?! Spinal fluid leak?! Weeks of recovery without much cognitive function, possibly having to relearn basic things. Fuck. Fuck. Fuck. I'm going to have to go through those surgery doors hoping I continue to eat vegetables and not become one. This is the epitome of overload. If it's surgery or radiation, whatever but I want and need to see my oldest graduate before I make any decisions.
The amount of panic I hold back on a daily basis nears a metric ton. I reserve myself these days. I'm private, rarely go out and if so it's to have some BBQ with the family or to get the kids some clothes, every now and then catch the local AA baseball team, hit up the local swimming pool in the heat. Our yard and landscaping take up most of my energy. I'm hoping I can get some major work done so that we don't have to do as much when we grow old (please, Divine Energy let me grow old with my husband and kids) I don't know what I get allowed but I'll fight for every second. There's more of a mark to be left on this world and I'm not done. For now we are just waiting...
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