Did they say it was a septic shock? It is shocking to hear that. Can you please let me know further detail and sequence of events?
I am really worried.
Wish you a blessed year 2009.
I'm not sure, Dr. Arun. There were at least 3 independent "internal medicine" doctors alone assigned to me, none of which was around much after I was cognizant. In addition to the many other specialists. In hindsight, I could have seen it coming on with odd symptom progression. But I attributed it to minor things... made excuses.
Before I went on the ambulance, I had a hard time maintaining my blood pressure (too low). When I finally took the ambulance, I was having difficulty breathing and was out of touch with reality, even hallucinating. I was so abnormal that the paramedics wrote "illegal drugs/alcohol" in the comments, but all tests cleared me of that.
In the ER I passed out and stopped breathing. I read last night they spent 90 minutes stablising me, which included more than one intubation as (although I have no memory) I pulled out the first and started chewing on it?!? When I did wake up over a week later, I had at least three tubes.
I was on a ventilator, I also had renal failure, and I was a little overwhelmed with the other things that failed. I know I was also on a feeding tube. They had me heavily sedated for a while and even restrained. I am still very bruised, but they are healing. I feel a bit like I got hit by a truck, and I only want bland food!
Are you still woried now that I am home? I am not sure what to think. Except that I can't sit up any longer and I think I'm going back to bed. They always woke me up around 5am to take my blood.
I fell asleep at home last night, started out 2009 much better than even the morning before. I hope you have a blessed 2009 as well...
I feel so sorry for you. You have undergone too much. But God is great, and not to take any credit from your doctors, they really did an excellent job. With your description, you were really too sick and thanks to the great facilities and good fortune of having so skilled physicians and paramedics, you are out of woods. Welcome back to home. You will need lot of rest to recuperate fully. Still at loss, what would have happened.
Take good care of yourself. Hope your son is doing good. He must have missed the mom a lot.
Best wishes and again a very happy new year to you.
I certainly appreciate the thought, but even with all the poke-holes - I feel very lucky. I had one remarkable port in my neck which caused me great annoyance and pain (ripped bloody clumps of my hair out) until I finally got them to substitute a hand-IV. I got it as a "souvenir" and it was stitched in and went 6 inches deep inside me.
I hope this helps you understand. The doctor who finally allowed my release last night, attributed my blood poisoning to carisoprodol/meprobomate poisoning rather than a bacteria. I had a recent dosage increase, and it apparently was more than my body could metabolize, day to day my blood pressure got harder to keep up (I have a reliable home monitor because of hypertension) to where I felt faint. Day to day mental functioning got worse until I tried to use a pair of pliers as a telephone?!? Too many embarassing things.
I AM out of the woods! And every day I'll get stronger, it's even easier to hold my head up than yesterday. I'm smarter, I would not let things progress as they did before getting assistance. My parents have been here since I was admitted, and will stay until I am functioning more normally.
I can understand the severity of the illness. Your recovery also depended on your strength and this must have played crucial role. Mind you, you need lot of rest. Enjoy this time, without thinking anything.
Just one quick question (and no - I'm not fretting, just in thought)...
Does multiple organ failure result in permanent damage to the organs? as in, are my organ systems going to be permanently more weak or more susceptible to things?
For some reason, I can't imagine eating fast food again. My health seems so much more important than ever, maybe because I never saw it as vulnerable...
I feel okay today, all these bruises and holes will fade... :-)
Hope you are well...
No, multiple organ failure do not result in permanent damage to the organs. They won't be either weak or susceptible to any thing. Human body has remarkable power to heal and body systems recover for optimal functioning back. May be few small scars for a while, but hopefully body will have nothing to make you remember of this big illness.
I went for my first follow-up today. I also obtained the medical records from the ER and admission. I did in fact have septic shock, bacterial as I also was listed as having pneumonia. My blood pressure was listed once as 69/33. The organ system failures were listed as respiratory, cardiovascular, immunologic, hepatic, and renal. I had some degree of encephalopathy? I was on 100% oxygen from the ventilator for a number of days because I would not breathe on my own.
They did among other things, CT scan of my brain, lumbar spinal tap, EEG, EKG, ECG. I have a pretty big bald spot on my head from something, but I don't care.
The "Emergency Room Visit" report says, "The patient required critical care due to the acute impairment of vital organ systems and a high probability of life threatening deterioration. Emergent interventions were required to prevent life threatening deterioration (septic shock acute renal failure)."
I almost died, didn't I??? I would like your honest assessment. I'm strong enough, I'm out of it now. I have memory blocks that are gone from the two weeks before what happened, but I can remember everything before then, and everything after the day after Christmas.
I'm scheduled to return to work Monday the 12th, but I told them I'm still weak. I got a disabled parking permit for two months to help me get back.
I have to go, son will be home soon. He was very responsible through this, but yes, son missed the mother and mother missed the son. My family visited me every day, even when I couldn't respond. I am a very fortunate woman, blessed... I know it wasn't my time to go, or God would not have let me hold out until I was in the ER. Not my time yet...
Septic shock was my initial assessment. Yes, this was very close. You are very fortunate and blessed. We all needed you. God is great and kind.
Hello again, Dr. Arun,
My CT and spinal tap were normal, but my EKG, EEG, and ECG were all abnormal. Given the circumstances, is it reasonable to want a repeat of the EKG, EEG, and ECG? or is that unwarranted unless I have specific symptoms?
I'm presently broke, otherwise I would be paying you for these answers! I get paid next week again (whew!). Go back to work Monday! I am so fortunate for my insurance and disability income! I hope I never miss a day of work in 2009. I am going to try. I know I will miss half-days for necessary appointments (like another lumbar sympathic block next Friday afternoon).
Thank you for helping me through this. I didn't cry until I met with my Counselor yesterday, I didn't even know I felt like crying, and I haven't felt like crying at any other time. I don't feel sad about this that I can recognize. It could have been worse on so many fronts. How can I consciously feel grateful but subconsciously there be something in me that would cry? She said I need therapy for this, anyone would. So I go meet someone knew and cry about what happened and that helps me get beyond it? I personally think understanding what happened will help me better than anything. Anyway...
Most Sincere Regards,
The EKG (ECG) and EEG can be abnormal due to fall in blood pressure. There are two school of thoughts on its. Some would document the normalcy by redoing them, while some would not do it on the grounds that reason of abnormality was known (the shock) and recovery from shock is bound to bring them normal.
Take very good care of yourself.
Do you think my getting sepsis was a freak occurrence? I KNOW my immune system has a history of overreacting. When it needs ten "soldiers", it sends out ten thousand.
My real questions:
1. Because I got this, and got it so bad, does that mean I am at an increased risk of getting it again in the short or long term?
2. How long do staphylococcus aureus bacteria live on surfaces?
3. Do they float in the air?
4. My blood pressure has been staying so low, 80-100 over 60-70... I am wondering if this is temporary, or if I should discuss with my doctor either discontinuing or decreasing my Lisinopril.
I do not like my blood pressure being low, 80 systolic is not far from 60, and 60 diastolic is not far from 30.
I saw the doctors always using anti-bacterial hand rub gel, and I bought some for home and work, and a keychain size. I'm working through the psychological shock, which I think I am just beginning to feel. I will be glad to go back to work on Monday to have other things to occupy my mind! So lucky to still have my job, too! And maybe I can get my plans back this year if my performance and attendance are impressive!
Only thing is my parents are leaving soon now that I am doing so much better. We are so lucky they could be here for us...
I do not understand, but I feel very calm. That is not a feeling that I have very often in my life. I like it though. It is like being more in touch with nature.
I hope you and your loved ones are well...
Sincerely (yet a little troubled in the mind until I find more understanding)...
Your blood pressure is low so there is need to discuss the doses of lisinopril, with your physician.
1. Septic shocks are very unusual occurrence and this being reoccuring is rare unless there is a reason for the decreased immunity.
2. Staphylococcus bacteria can stay long on the surfaces. Infection by them is dependent on host weakness or they suddenly increasing in number.
3. These bacteria are all over in the environment. As I mentioned, we live with them. But unless our immunity is weakened or they increase in virulence, there is no fear of infection.
1. When staphylococcus bacteria enter your body, do they multiply? As in, are we a good host?
2. What makes the difference between staph just causing pneumonia, and staph invading your bloodstream? How does it cross the barrier between organ and bloodstream? Why does it not always do that?
3. How could my immune system be so compromised, and then overreact? Could all the medicines I'm taking compromise my immune system? Any one particular medicine?
Contrary to what the admission paperwork says, I generally take very good care of myself. I didn't in the days leading up to this because I was... going out of my mind?!? :-) Me, a banker, couldn't even count backwards from 100 by seven!
1. As a matter of fact; for any bacteria, including staphylococcus, we are very good host and they like to multiply. Our body immunity (we have two main sets; cells and proteins fighting the infection) does not let the bacterial population to grow. But occasionally there can be discrepancy; either immunity is compromised, or not working adequately due to some reason (like viral fever) or the virulence of these organisms is more than our body defense. Thus they start growing/multiplying and outnumber our body resistance and thus the symptomatic infection.
2) Some bacteria have propensity for specific organ so pneumonia is caused by some group of organisms and intestinal infection by another group of organisms. Why does that happen we don't know. It is more of a statics evidence. They will attack an organ, again depend on our immunity or virulence or combination of both.
3) There is no specific medication which is causing your immunity low. Any medication can cause specific action in an individual which are not known. Combination of medicines too can cause some unknown untoward effects. It is difficult to say the reason in your case. This might not be the medicines at all. The common reasons for getting infection are people on steroids, or on cancer chemotherapy or immunity deficiency diseases, etc. Some invasive procedures like injection at any site predisposes body for entering the bacteria. So this can be a factor. But, it is difficult to ascertain or pin point most of the times.
Since I don't have any immunity deficiency diseases, I was wondering... The week before I crashed I had a few injections... four were for the lumbar sympathetic block by the anesthesiologist, and two from the podiatriast (with steroids).
I give up wondering why. I'll just be careful and take very good care of myself.
Thank you for the detailed information, and for putting up with my wonderings. (Next week I get paid and will accept.)
I can't figure out... can you tell me? I understand that I stopped breathing, and I wouldn't breathe on my own which is why they had to put me on a ventilator. So for those days, I was on 100% oxygen... but occasionally I would take a breath on my own. What I don't understand, and really want to understand, is how and why did I start breathing again???
My guesses? Do you give patients some kind of medicine that makes them start breathing on their own? or does the body just naturally want to breathe again, so it tries and tries and eventually manages to start breathing automatically again? Autonomic nervous system fails to keep the body breathing (because of infection?), but keeps trying until the circumstances are right (infection subsiding) where breathing starts?!?
What is this magic that made me start breathing on my own again? I want to understand, if you could tell me this...
You are right. Breathing is more or less a spontaneous function. When the blood pressure is low, the brain functions are depressed and there is a possibility that respiratory center in the brain does not get enough blood perfusion. So respiration is either sluggish, or the respiratory excursion is so inadequate that there is built up of carbon dioxide in the body. This further complicates the phenomenon of acid base imbalance in the body. Once our body systems are supported by mechanical means and medicines, our system responds back and this normalization induces the spontaneous respiration. The ventilator in these circumstance is gradually weaned off.
It is pleasure assisting you.
Good morning/evening, Dr. Arun,
So, what you are saying is that it is actually more of a process than it is a "flipping the switch" when I was able to breathe on my own again? As the infection was subsiding I was gradually breathing more on my own?
The doctors explained so little when I was in the hospital. I know they were very, very busy. I asked one, "Did I come close to dying?" and his response was, "Well, everyone is going to die someday." I was like, "What?!?"
Doctors are funny! The one asked me, "Why do you ask me so many questions? Why don't you ask any of the other doctors any questions?" and I told him, "You think you are the only one I ask questions?!? You have no idea!"
I hope you had a nice day, and have a good evening. Second day back at work! Good to be back! :-)
Good Morning Deb,
Yes, this is what the exactly happened. Once the infection is controlled all body processes start returning back to normal. Life processes are spontaneous.
Oh yes, you must be enjoying your work.
Hi, Dr. Arun,
One more question...
I went to Dr. O's today, but saw MLB. I told her what happened, blah blah blah, but she was very focused on the seizures. I gave them all the records the hospital would let me have, which were ER reports, consultation reports, and lab results.
My parents saw some of the seizures, and what my mother described was very different from a seizure I think I remember, otherwise what I experienced either wasn't a seizure or was imagined from all the sedatives and anti-seizure medicines they were giving me. Every day in the hospital, I had multiple doses of Neurontin, Dilatin, and Lyrica. MLB said she can't write me anything but pain medicine until we get the seizures straightened out.
I'm not a doctor, (no, really?!?) but I don't think I ever had seizures before the sepsis, and I haven't had any since I was released. So I limit the seizure activity to the sepsis situation.
But then there was the abnormal EEG. The neurologist wrote in his consultation: "Encephalopathy. The etiology is unclear. The possibilities include metabolic in origin or idiopathic pathology such as mass lesion but these are unlikely." The EEG "impression" showed "focal changes in the right parieto-occipital region."
MLB also said I shouldn't drive until I've been seizure-free for a year. She said if I have a seizure while I am driving - I will die. She is very good at scaring me, but she held my stare so I know she was very serious. I also have the responsibility toward others to not drive if I might risk THEIR lives.
What is your take on this? I see both the main internal medicine doctor from the hospital and a new neurologist on Monday. I couldn't see the one from the hospital because he does not accept my insurance. But he didn't witness any of the seizures, but he has access to all the other neurologist's records.
I'm perplexed. Not driving = how could I possibly keep my job? I'm a single mother, even if buses could get me downtown and back, the time involved would mean that I would barely be there for my son.
I'm hoping you'll tell me that it's not likely I'll have any more seizures. Or that there is a test that can better predict. But don't fool me. Can you tell me what the parieto-occiptal region having focal changes means?
Sorry for the book, but MLB scared me ...
The seizure, EEG changes, focal changes in the parieto-occipital region, in my opinion were definitely due to the septic shock (with a history of no seizure previously). Most of the physician while giving some anti-seizure medication for 2-5 years, depending on the follow up EEG findings, would allow the driving. I think, chance of you getting a seizure again, is negligible.
Hope this helps.
I think it's starting again. One of the doctors worked me in today, put me on Levaquin? My chest is heavy like last time (I am starting to remember some things), the double-vision is back, and my blood pressure, while not dangerously low, is 80-90's over 60 to 70'. Then my blood pressure is normal, then it falls again. I can make my eyes move in different directions. They told me to go to the ER if my blood pressure gets too low or if I start losing my mind again. I didn't get to start physical therapy yesterday, have to reschedule that, so who knows how long I'll be walking with a cane. I think I'm already getting used to it.
Maybe I'm scared, maybe it's not even the same thing. I took all my medicines like a good girl (!). I'm also scared because I'm still weak. My boss gave me some grief today because I went to Ocala Wednesday in the middle of the day, she said something about 'don't be looking for any sympathy from her'. I don't want sympathy. I just want to do excellent work. Can't fall asleep either, laying down makes my chest feel even heavier right now. He also prescribed me Mucinex which helped when I was in the hospital. So I'll just relax, and trust that everything will be okay...?
Can't wait until I can laugh and joke again... :-) Be a little silly!
I am worried with your symptoms and any small change/worsening of your symptoms, please don't wait and call ambulance. I appreciate your humor at this point, but we cannot take chances for far worsening of the symptoms and getting things out of hands like last time.
I had no idea what was happening last time. And I knew whatever is wrong in my chest/throat is getting worse because the stuff is getting thicker and more difficult to cough up, and my voice is getting worse too. I have been taking it seriously - I did go see the one internal medicine doctor from the hospital today (he's the one that gave me the antibiotic). We'll give the Levaquin some time to work? unless things still keep getting worse? I really don't want to end up back in the hospital. And my parents probably could not come back so soon. And my job will not trust me if I get sick AGAIN, so let's hope that Levaquin WORKS...
Thank you so much for your guidance. Again, I am reminded how lucky I am in many ways. I promise you I am taking very good care of myself.
Thanks for your response. I am worried as I cannot properly assess the situation. It is good that Levaquin has been started early.
I wish to know how you are...
I will be getting lumbar sympathetic nerve blocks every week again. Some doctor called the anesthesiologist and requested this.
I had chest X-rays, new EEG, Pulmonary consult, and LSNB today. Busy day. Friday is MRI of the brain. Not like I am worried. Maybe I am a little.
This is a lot, Dr. Arun. A lot for one woman for one year plus a little. I KNOW I am strong, and I believe in karma. It will all come around, I have done nothing so bad that it would haunt my spirit. My spirit is on a swingset, going as high as she can, all by the will of the body and the strength of the mind. And I can absorb, if that makes sense.
Please let me know how you are. I think about you and your family.
I can understand all which is going on and this too is tough. I appreciate that you have come out of it so strongly. As a professional one wants to be in thick of action but this medium has its limitations of contribution, though keeping connected is so big blessing. Thanks a lot for your thoughts and keeping me updated.
Hi again, Dr. Arun.
It's not tough, I get tired. I've got this friend for about 10 years now. There's a comfort that comes with that kind of familiarity, but for some reason, I haven't told him what happened to me last month, and I know I won't see Podi again.
I'm not going to wail about having an existential crisis just because I almost died. But I was supposed to have a brain MRI this morning. And I said it totally wrong about contrast dye because on the phone I said 'yes' to 'have (I) ever had kidney failure?'. And they made a big deal about it saying they couldn't do contrast (as the neurologist ordered) because I had prior kidney failure. Well, I'm the kind of dumb that pipes in, "They're fine now, all my organs failed, and they're all fine now." Now, I don't even know that this is true, I think the pancreas is an organ, too, and I don't think my pancreas failed. The point I was trying to make was that I was fine, but I think I am no good at making a point. My ex-husband said once that I couldn't make a point, that all I could do was dance around one.
What this is really about is my job. Maybe I am having more a professional crisis than an existential one. It is awesome that I make a good salary, it's like winning the lottery every single year would be for some single mothers. But I'm finally willing to pretend to confront someone about two things my boss said to me last week, my first week back to work after all that.
I was so proud, you know. This thing I didn't even know, this "sepsis" was a new word to me, you add "shock" to anything and it sounds worse. And I didn't have to go through this alone, which cushioned that shock, if I can say. But I go back to work and my boss is so irritated because I was out through their worst time of the year. She said, "you really need to take better care of yourself." I'd give her septic shock so she could try to be really physically weak and try to pee in a bedpan. Except I wouldn't. Because I am morally strong.
I am so proud, you know. Because even though I didn't know what this was, my loved ones and the medical professionals did everything right so that I could go back to work within a month. and my first week back she said to me, "Don't expect anyone here to feel sorry for you." and that idea was so foreign to me, I haven't ever (to my obvious knowledge) wanted anyone, any way, to feel sorry for me.
I'm walking with a cane. Big deal. It was a big deal back in some month last year, because I was too embarrassed to do it. When you need one, you realize how they help.
I guess it is also in another few words from my boss my first week back. She didn't know or care how much longer I could have stayed out of work. But the day I went to Ocala last week, yes the appointment took much longer than any other because for some reason I couldn't pee in a cup. But all she noticed was when I left that day, I was the first programmer gone she said. But when has she ever noticed me always being the first programmer there every day? She doesn't! She can't! Because I am always there before she is.
This is why this is all so stupid. I am a professional, a dedicated one. They took my plans away, good move because SS (Septic Shock) almost took my life away. This was the first year they didn't meet their January 1st rollout. They actually still have not rolled out 2009. And my boss said her boss wants me to prove my dedication. They play me like 'good cop, bad cop'.
Boring stuff to write about. I'm only in a professional crisis.
Three dots on an otherwise blank line are how I break thought, by the way. Like when I really want to change subjects.
I don't understand that I almost died, I know I did even if you wouldn't have told me. It is something doctors don't seem to like to discuss, I'm thinking - after an admittedly small sampling. Dr. Sanchez gave me the block and said one of my doctors called him and told him to continue the blocks, but then he wouldn't or couldn't tell me who.
I can see I really lack patience right now. I'm writing out of my ears.
I laid there so long in the ICU, some nurses were so caring, and some were nearly evil. The one who kept me on Haldol as often as she could was the most evil. Parts of it were scary, I loved so much when my family was there. And I would close my eyes to envision them when they were gone. After they let me be off sedation, I stayed awake for more than 72 hours. Christmas Eve (also my father's birthday) up through getting out of the ICU on the 26th.
I know this has to be so boring! Please forgive me!!! If you get through reading it, you can maybe pretend I never wrote it?!? It must be like me trying to watch television in there.
Over $200,000 for the hospital alone, not including the unique doctors' billings. I think I'd better not come to nearly die again! I don't know how much it costs to be on a ventilator so long. I'm just glad they didn't "pull the plug"!
Laughing is so much better than crying, and lightness feels so much better than trying to thrive off the damage that careless, gossipy words can do. When the wind blows, who can say what is good or what is bad? The famous Buddhist story with the old horse or donkey, I don't remember the distinction that well nor do I feel it is as relevant as the tale. It is not our meaning to feel sorry for others, nor should they want it. One can feel sympathy without pity and without gloating for how lucky we are to have missed the bullet, so to speak. And I can feel sympathy without comparing plights or having to know "how close" or "how much" or "how terrible".
It is like one day, I said to my uncle after hearing an unpleasant truth, all I did was look at him and say, "I'm sorry..." and the understanding was not that I felt sorry for him, but that I was sorry. In Spanish they might say it better, "lo siento" as in "I feel it" - not as "I feel sorry for you".
Ah, I think I am done blabbering. I've got a new open sore on my foot, not afraid of it but you can bet I am taking very good care of it.
All the best to you, so sorry for that you had to read so many words if you made it this far!!!
And besides, I don't like all the pokes holes from so many needles. I need a month off needles! ;-)
Encephalopathy, abnormal EEG, they don't want me to drive.
I've got an unusual problem, I think it should not be difficult to resolve, just liability freaks doctors out here.
Anti-seizure medicines are running out before I go back to Ocala, where they didn't want to prescribe them. New guy, neurologist, schedules me for follow-up Feb 19, I am way out of Lyrica and Neurontin by then.
I know the morphine definitely helps. But I can forget it if I can't have the anti-seizure medicines. I don't want to go somewhere that the priority is covering one's backside. One thing I have learned through this "almost-dying" thing is that I definitely need some medications, whatever they may be, I don't give a flying dog's ear.
As a non-addict, let me tell you as a "patient in need of pain medicine to half-function", this patient's difference between Vicodin and Morphine. Vicodin sucks, vicodin is evil, vicodin is not even something I would take again unless my life depended on it.
I know nothing really about morphine. So I guess I tell this to you as a basic idiot.
Morphine is metabolized very "cleanly" by my body. I hope there is some point in what I am trying to say here. I feel no craving for it at 70mg every 24hrs. That's why I like it, I feel like I can handle this, and I don't feel like it could get out of control.
I guess I don't know what class all medications are in. But I KNOW they didn't give me pain medicine until I explicitly laid it out as a need.
I'm tired, Dr. Arun. Maybe stayed up too late tonight?
I hope all is well with you and your loved ones...
As I had mentioned before also, I like all, what you write and in that sense you are gifted. You are gifted for the numbers, which you bank knows, as well as for words, which not many know. Your boss should be a bit considerate. Just in a month you are back for work, and this strength should be appreciated. I think you are doing best in the circumstances. Given the situation, I would let my patient drive. Personally I feel there is no reason for restraining. There is no set rule for the medications. Some people have lesser side effects for the specific medication, while other in the same group may not be as well tolerated. So this is individual metabolic response. And physicians fill up prescription on that basis.
Everything is going fine at my end, though a bit busy.
Dear Dr. Arun,
Thank you for reminding me. My novel, "The New 22" has developed an ending. I just need to write it an polish up the rest. A little thing.
37yr old white females are not supposed to get septic shock. It makes the whole story more interesting, and I didn't even need to make it up. It is a famous line, "Reality is stranger than fiction..."
I feel happy. I hope you are well.
Most Sincere Regards... :-)
Thanks for keeping in touch. Just remembered you and was wondering, how you are doing. Hope your shots went fine and your blood pressure is controlled.
Your MRI should be normal, there is no reason, it being abnormal. Please let me know the report.
I got the report back already. It was very unremarkable. :-) Just a little cyst or polyp somewhere sinus-thing. I don't have it with me.
Hello, yet again, Dr. Arun...
Today was a funny day, an odd day.
Corporate politics. My manager tells me I need to take better care of myself, and I wonder what else I can do?!? I know the things that bother you most about others are things you don't like about yourself. So (privately) (hah!) I think she needs much stronger sedatives than I've ever been on.
The cane has had an important day, more important than my day. People waited in the unusual cold here to hold the door open for my cane. They got up to let my cane have a seat, and they let my cane get in line. At first that bothered me, but then it felt somehow nice. Like, I don't want this, and strangers (in person) seem to be the only ones to notice.
Dr. S got it very good with the sympathetic block today. I can't walk without the cane and even then it gives out, but for goodness sake - he got the needle right where it should be. It was like he did he first time, the first block, and he said this time he can't do them forever, but it didn't hurt...
It almost felt good most of today, and it reminded me so much of laying there in a hospital bed, wondering why my foot wasn't hurting. I have felt good except for corporate polictics today.
Like, my options are decreasing. If Dr. S got the blocks this right every time, I would never give them up. But what does it take to do that? He apologises the whole time. And sometimes I win, and sometimes, it's like nothing. I think I know what he is saying. He was very happy that tomorrow I have a consultation for a spinal cord stimulator.
I can't believe this, but right now I am thinking about what the Podi offered. A three day coma, on something, in case I didn't mention it. I was all ready to do that this until I got into the hospital for my first time, and then I was like, "No way in (heck!)" I still haven't gotten my voice back. Intubation SUCKED (pardon the term).
I can't sing, I probably never said that was important to me.
I saw Dr. O again today, it was good to see him again and I accidentally told him that. I've never said that to a doctor before ("It's good to see you again!") and it felt weird as soon as I said it. But I like him. Not only is he nice, but he and MLB pegged what was wrong with me from my first visit. As you said, he is a good clinician.
I don't know if I confessed to you the large bald spot and dent I now have on the top of my head since I was in the hospital. I'm thinking it is not going to grow back since it has been so long now. It is about 3 inches wide and over a quarter inch tall. Luckily I have curly hair so I can mostly conceal it unless I show it. I asked Dr. O about it (alot of trust, believe it or not, from a vanity standpoint!) I think he gave me a reasonable explanation about something that shape being pressed into my skull for a period of time causing tissue death and subsequent hair loss. Couldn't say it would grow back. Works for me, to have a reasonable explanation.
I feel good because he kind of gave me "permission" to just leave things as they are with my treatments right now. I'll do the SCS trial, but I'm not excited because it will not resolve all the pain, and he explained when you implant something in your body it can be difficult to remove it after time. As far as the Podi's "three-day coma", Dr. O put the words "coma" and "death" a little too close together for my comfort.
Here is my problem, and it actually is a serious problem to me. Last time I went there, I saw MLB. She laughed or expressed disbelief that I did not know I was sick before the whole 911 thing. The "ER Visit" documented that my chief complaints were, "ANXIOUS and BEHAVIOR CHANGE and AGITATED and VISUAL HALLUCINATIONS." I recognize this as similar to hyperarousal. But in the ER review of systems it's like I reported, "No this, no that, no that, no that, no that. All systems negative except as recorded above." Anxiety and fever. My pain level was self-reported at 0/10. ??? Nothing wrong with me physically except I took an ambulance to the ER?!? (What's wrong with this picture?)
Dr. O laughed at the fact that I didn't know I was sick, too, and it puzzled me. The only thing I knew back then was that I couldn't maintain my blood pressure, too low. I think he thought I just didn't remember being sick. But later today I put their (Dr. O and MLB)reactions together and figured either there was something funny that *I* wasn't getting, or there was something not-funny that *they* weren't getting. I don't think they know how functionally damaged I am in some regards. I'm very well functioning in others.
Almost everything I do (without thinking/automatically) is survival-motivated. Even the fact that the last thing I remember is getting in the ambulance (because it was "surrendering", or turning myself over to the paramedics). I'm not going to explain this well, but I can try. There's a serious fault in my brain, something that won't show up on an MRI and maybe not on an EEG. It is real and it almost cost me my life in December.
I know you are busy. I'm afraid you're not going to be able to read this. I KNOW you can understand this because of your training and experience.
I think some part of my limbic system is broken, as in dys-functional. It explains the CRPS/RSD, it explains why I can willfully, psychologically turn off pain (except this is exhausting). I had to wonder why my foot recoiled when the new pain guy barely touched the foot, but I let Dr. O touch it however he wants.
I'm getting into a recursion of thought here where my limbic system itself is a risk to my safety. The thing that is supposed to protect me is a risk to my life. It failed me in December. It let me be confused and unaware ((or is the unaware un-related?)) until I didn't have enough rational thought left to know whether or not I had a health crisis. Normal people - a "health crisis" is a crisis. To me, all I could understand was, "blood pressure is too low, too low, something is Wrong" and then a state of alert and agitation, but I didn't have a clue what to do about it. Can you believe I would be that ignorant? Otherwise intelligent. People have said to me, "How can such a smart person be so stupid?" These people didn't recognize differing intelligences, most people don't recognize differing intelligences.
But I've got to come to terms with a limitation in my ability to recognize internal states. I think it is why I've been getting myself stressed about what to do next about my foot. And I'm thankful that Dr. O gave me "permission" to not do anything, to not change anything right now. Because that is what I want to do different right now - nothing.
I've been trying to "fix" my foot this whole time you've "known" me. That's been a drive consciously/subconsciously because the limitation is a real risk (I can't "flee"). I used to love to run, if you remember that. I've been trying to "fix" my brain too, for many years, if that makes any sense...
If the brain is the risk, what is the mechanism to a resolution? I need to do nothing and think nothing until I can get myself out of this hole of thought I've dug myself down into.
At the most simple, it scares me significantly that I didn't know I was mortally ill.
I do agree that all of us have differing intelligence for different situation. And this is probably natural. We are best in some and not in others. Your problem during the episode of shock was what we call as brain fog. Whenever we are in this situation, either it is difficult to recognize the symptoms or there is always some delay. This delay or defect in detection is due to a fact that sometimes we think that this would pass of in some time. Then many times brain fog or problems due to low pressure prevent us from taking fast and optimal action. But in your case I think you were perfect as you took the right decision of calling the ambulance at the right time. Don't take much about that laugh. Many times when doctors can't explain the things, they just laugh off the matter. Laugh is their protective shell.
I am not sure about the bald patch. I personally feel the hair should grow back, though it may take an year or so.
Hi, Dr. Arun...
I didn't mean to imply that I disliked their laughter, quite the opposite. Laughter lightens things up! :-) It just confused me because they took for granted that I should have known that I was sick.
My son gets credit for calling the ambulance. *blush*
Maybe the "after-shock" is just hitting me right now. I don't want to make any decision regarding this right now. And I don't have to!
Thank you, XXXXX XXXXX hope you had a good day, and a better evening...
Yes, day was good. Thanks.
I'm pretty scared. Maybe it's just dumb. My son is in the shower, so it's easy to write now.
The day after I saw Dr. O, it broke out in blisters after I put lotion on it. The skin is really tight and thin, it was too dry, so I put something on it I've put on it before. Different result.
I can't walk on it like this, the blisters break and leak, and the only thing I can do to stop it from hurting insanely, is to put ice on it. I've been in this mess before, and now I don't think ice started it.
I don't think anyone is going to listen to me about this. The new doctor is different, my new PCP. He put me right on Clindamycin. I like him, I've got this doctor's cell phone and of course I don't use it. My point is this doctor actually calls me back. I think Dr. O is way too busy, I tried once or twice I think, and his staff told me he wouldn't call me back, that I'd have to be seen. I can't do that right after I just saw him.
I get another block tomorrow. I know he doesn't want to do them anymore. and Dr. Raj (new pain guy) said he wouldn't have even given me as many as I've had.
I feel paralyzed, Dr. Arun, because I am just afraid of doing anything. I'm afraid I'm going to get sepsis again because I think the blisters to the sores is how it happened before. I took Ceflex preventatively before.
I don't want to get a Spinal Cord Stimulator right now, I don't want anything permanent, or 'irreversible' is really my problem. I don't want to stop the nerve blocks because they help me remember what it is like. I doubt my insurance is going to cover Podi's idea, and that is the only way I can afford it.
I'm not feeling brave or smart or strong right now. I'm feeling stupid and very vulnerable. Because I feel like I've been in this position before and so I should know how to protect myself but I'm not sure how I got the sepsis. I just feel dumb. I feel like no one else is going to take me serious about how scared I am of getting sepsis again, and then what if I end up with it again?!? I am not as strong physically as when I caught it before. I keep getting infections since then which makes me think my immunity is pathetic right now, they gave me so many antibodies in the hospital. I've been on one antibiotic after another since I got out. If I keep catching stuff right now, why won't I get sepsis again if I have open sores on my foot again? I am not taking the scabs off, but I can't tell if parts of it have skin or not because it is all kinds of colors and some parts have closed blisters, which means the weeping is coming from somewhere open.
Do you have any idea what I should do? Am I stupid for being afraid of sepsis again?
Blisters and sores, do predispose for the infection. Though taking clindamycin should be able to prevent any serious sepsis. But a very small danger is always there so some form of active measures for local application, should be considered. I always use povidone iodine, I suggested you earlier. A very small amount is needed. Just cleaning it with the betadine is very efficacious. As a matter of fact, antibacterial creams are usually not very good as they are sticky and may let the dirt or bacteria retained.
Yes, I guess I forgot about the iodine/betadine. I even still have it. No need to panic. No good in panic! Thank you again...
You are always very welcome, Deb.
I had an appointment today with the neurologist that went ... badly??? I could not ask him a question because he was too busy being an hour late and typing into his laptop. I would stop mid-sentence and he would not even look up.
He wanted nothing to do with CRPS/RSD. He said my condition was "beyond him". He would not write the prescriptions for Neurontin or Lyrica, he said I needed to go back to Dr. O for that, and I said everyone was waiting for him to evaluate things, to be safe, and he acted like, "Hell, no!" He said, "This is not what you saw me for... you saw me for seizures in the hospital, and I got your MRI and EEG, you're good, let me see you walk." I am not kidding.
I feel like I have not wasted so much time in a long time, as I did when he finally saw me. Sleeping in the hospital to TV with no sound, was more productive than watching this guy type and trying to speak to him. I asked him, "Do you treat RSD?" He looked at me only long enough to confirm that he would not write the prescriptions. I think I can get prescriptions written from the guy from the hospital, but if I can be crude, damn, this neurologist is about as useful as old wallpaper. I'm sorry, I think I'm mad but I feel hurt actually. He tried to get me to answer how many seizures I had, and I said I didn't know, how could I know?!? I was not conscious?!? and I said all the consultants mentioned the seizing. I know all five of them were not there at the same time evaluating me.
There is not even an argument here. I've got only a few days worth of Neurontin and Lyrica left. I will get the medicine, but I feel something like disgust with this Neurologist guy. At least he won't waste my time with the Nothing he can do for me. The truth is this sort of rejection is very scary. Dr. O said he gets all the CRPS/RSD cases because no one else wants them. Like, where does that leave me? Dissed by the doctor that the others were waiting on.
The other thing is that anesthesiologist says Podi's idea is no good. No better than getting a nerve block every day for three days. Nothing to be gained, no cure, not even any better afterwards.
I thought I was doing well, Dr. Arun. But what have I got to work with now?!? It's like looking down at your hands and seeing sand slip down away through your fingers, nah...
It's alright because I can get the medicines I need. It is not going to be easy, but that makes it more worth it. I am not even referring to narcotics. Just anti-seizure medicine.
I'm... sad. I may have to go back to Ocala. I don't care.
Bad day. Sorry.
I need a hug.
At least my son is here with his friend and they are having silly fun.
PCP wanted to have me admitted to the hospital again, TODAY. But being that my only experience being hospitalized was after almost dying, my perspective is off. He said I should have come to see him before my foot got this bad, but it only got this bad in a matter of days, it was absolutely fine when I saw Dr. O less than a week ago. Dr. O came through on my medicine by the way, I'm glad.
But I backed off trying to control the hospitalization thing. I did buy myself a few days with a "rocephin" injection, and a levaquin prescription. I've got two days, but Thursday I am supposed to put my son on a plane to Atlanta. If I go into the hospital Thursday night or Friday morning, and I can't get out by Sunday night, then my parents come down and get him from the airport, and then I just stay in the hospital until my foot isn't being so stupid.
They did a culture on the wound stuff, weeping. Longest time I think I've got before I have no choice is Monday then, when the culture comes back. I really don't want to be in the hospital again. But I want to be alive more. There were more blisters this morning, and I am not doing ANYTHING to the foot as far as trying to make it better or hurt less, so it can't be anything I am doing that is making it worse. It is like he said, to not have my life be on the line.
I should feel better about this then, right? Why do people get hospitalized if they are not actively dying?!? I am not actively dying, they are not going to intubate me again if I can help it. My scars just got flat on my neck from the central line. I STILL don't have my hair back!!!
I feel like running, but that feels stupid. Not only is there nothing to run from, but there is nowhere I can go and nothing I can do. I'm going to be back in, but then if that is so I am going to silence the drama. I am only going in the hospital until they can get my foot back under control. So many IV's than so be it.
You know I'm scared and nervous, but I have a couple days. Maybe it will miraculously just clear up. and maybe cows can sing...
I'm scared, Dr. Arun. Like, uh, worse than monsters in the closet or beasts under the bed. I'm not scared of being there, I felt safe, but the premise... the praemittere, you have to like that word!
My father HATES hospitals, he could hardly stand to visit me.
They are coming, Kyle is going to Altanta, my parents will get him and bring him home so I don't have to worry about the flight back. And I'll be laying on my arse again, hopefully have an embarassing Teddy Bear, and just do what I have to do.
Stupid foot, sometimes I think. At least this is not me in "life or death" this time. So what do I even have to be afraid of?!?!? Really!!!
There is a description for this kind of pain. The block has worn off.
It's like ripping your bones out from the inside. Sometimes it feels like that. Sometimes it feels like my blood became hydrochloric acid, and all the soft tissue is dissolving. Usually it feels like the area I call the "pit" - sunken, sick, and inherently destructive. Because the pit feels like active decay... dissolving.
I've got it bad tonight, Dr. Arun. I'm very sorry that I am complaining, it is like this. If my flesh was actually dissolving that would be better, because it feels like that but then it is still here to dissolve. He's right, and I need to go back in the hospital. Maybe sooner.
This feeling is amazing and deep and radiating from my foot like a dying hot wire, it is just like pulling a wire brush through and through and though, pull it through where the bones are supposed to be, scraping and leaving razor-flakes all the way. Sometimes that is the way my pain is.
But on a night like tonight, when I get stressed on top of it. Oh, God. It's like the blood turns into a metal and my body is still trying to pull it through my little veins, trying to pull a semi-truck through a hole in the wall. It's worse than that. because I get little moments of relief. So I feel the times when it is not acid-like destructive. Sometimes I can handle it. Sometimes I don't handle it very well. Like Play-Doh through a pin-hole, like a key through the eye of a needle. Sometimes the pain is so thick, like my blood was sludge, and the skin is thin and tight and scary.
I'm no good at describing this. Because who could explain something like electrical fire barbs being pulled, tugged, dragged slowly backwards through your veins?!?
Tonight the pain feels very heavy and thick and fragile in the way like angry is.
I don't know
I am sorry for this delay. Here is this just morning and getting ready and rushing for the work is sometimes on the mind. Please take the advice of PCP and go to the hospital. You won't be intubated. Maximal would be intravenous antibiotics. With your pain, which may point to infection, this is all which would be necessary. May be couple of days there and you can come back. I know, none of us like the hospitals, but it seems that hospitalization and intravenous antibiotics are necessary in your case. Also a blood culture can give the idea of the organisms and severity of the infection.
Please ring the hospital ER as driving yourself may not be safe.
I'm sorry, I get too scared sometimes. I'll go back in Friday as the doc and I talked instead of right away, my family will have arrived and I can wrap up some work stuff. Sorry if I sounded desperate. It can't be as bad as last time.
Sorry, and thank you again.
That was perfectly understandable. With the last time experience, anybody can get scared.
Have a great day.
I think I might be evil. One of our cats was sitting in my computer chair, so I swung him around on the chair a bit, thinking he wouldn't like it and would get off. Well, he did get off the chair for a bit, and he actually stumbled around like he was drunk! Got up, toppled over...!!!
But then he hopped right back up into the chair for another round. So I spun him again, and he tumbled around again and hopped back on my chair.
It feels evil. It's a nice distraction. If this is somehow torturing my cats someone will spy upon it. But I don't think it is torture at all. My cats all have a sense of humor.
Shweta likes to play a game we call, "Cat in a Bag". We sing a song to her at the same time. She likes this game so much, that when we go to the grocery store, so waits until a bag is empty and then crawls into the bag, waiting for the game where we sing and swing her around in the bag, she does love it. Our cats are strange things.
I know I have to go back in the hospital, okay? I know it, I think. Doc saw my business card and then called me a "hot shot". What does that mean? He is from Karachi, actually. I think I may be his only patient because I have his cell phone number. I can't even actually pay the guy. I love that he is trying to get started out here, which is why although the clinic I now see him at is a little scary for Kissimmee, I know he is new here. Another thing about not risking a medical license. I'm quite glad that I do not have to be a Licensed AVP. I earned my title, and then I work on. There are no governing bodies, I guess because there are no bodies at risk directly, only livelihoods.
I still have my job. I pay maybe 1,000 people now, not tens of thousands. But I am learning things on a smaller scale, and that is marvelous. Because I am learning the difference between things which are best handled en masse, on an automated scale, compared to things which are more practically handled on a 1-by-1 basis, there are 15 participants at risk, and so we deal with them individually. When I have thousands of people in affect, it is so different. Everything must be dealt with in a more removed manner, if that makes any sense.
My boss's boss was so proud when she introduced me to this Executive VP, EVP. Even though she introduced me by what I used to do. I wondered about that. I'm still employed, management is still proud. I've got the damned foot now. I walked away and it's still there, so I guess I have to deal with it.
"Hot shot", to me that was , offensive?!? Is that a compliment? I'ma lowly AVP. Hard to be a hot shot when all the fallout ultimately comes down on you.
I know I have to go back, but I'm scared, Dr. Arun. Like, I know they're not going to intubate me again... because if I do this early enough I will not have lost my brain.
I feel like a whining blob. Stupid foot.
But my son is singing, young adult voice. Softness. He doesn't know I'm listening.
I have to be insanely boring, I pour out words like rain or thunderstorms... Tens of thousands of words. Why do you even read what I write?!?!?
Do you cringe when you see I have written you? Asking yet again another question or ten questions? Sometimes I feel desperate and I write like a flood, I don't even know why I write it.
I think of a lazy river, and I am a hyperactive critter building dams and setting traps.
It's like, I don't expect you to know everything in the world, Dr. Arun, but you have a calmness that I am sorely missing. I feel like a burning thing. Sometimes I am amass with ideas, sometimes I fall to the ground because of this stupid foot that was supposed to have been such a little thing. Sometimes I think cancer would b better than CRPS/RSD, because even ER people don'tknow about it, and I got the most flat and sorry feeling after seeing Dr. G-P. I think he loves his laptop. In a way. Laptop to him equals me to you. I have grown to ignore and favor.
Like, the one crisp tree that held on to its leaves.
You are very good with the words and I take this interaction as an avenue to learn so many things like great expression. Not many doctors are good with the writing and expression, especially me, so for me this is a learning opportunity. I read everything you write and hopefully my brain processes them fully. I do suggest you, whenever, I can.
I got out of the hospital last night, I got sick with some virus even though I stayed in my room!
I am very frustrated with the business of medical care here. Neurologist so far as I can tell want nothing to do with CRPS/RSD. I think they would rather get ill tthemselves.
And then I get a neurologist who has seen me twice in the hospital, ordered another brain MRI two days ago which I got yesterday. But I can't see him according to his staff. I could see him if I had no insurance at all, but since I have insurance, I cannot even pay him with cash. That is the most ignorant business practice I think I have encountered. Refusing cash?!? I think something must be wrong with MY brain, so I HAVE to see a neurologist.
New guy, new PCP, admitting guy, I do like him, he has a very odd sense of humor. I think he is trying to help me.
I am so bruised. They blew at least six veins trying to get an IV in my hands, I have tiny veins, one guy used a "butterfly" needle. My hands and arms actually hurt, but you won't hear me admit that to anyone here. I feel sad.
I do feel happy because I have a wonderful family. I came home and my mother took care of so many things while I was in the hospital, and my father made some things much easier while I was gone, they just got home I have to go,
Welcome Home Deb,
It sounds a bit odd. If the neurologist has ordered the MRI, how would he discuss the reasons of ordering the investigations and results with you, if he is not consulting.
Convey my regards XXXXX XXXXX parents.
This is way too embarrassing, but you are a doctor and I'm sure you've dealt with this. Maybe you could reassure me and so I can tell my doctor tomorrow instead of being too embarrassed. Coincidence, surely, but ever since the day I went into the hospital, I have had persistent diarrhea. Not to be gross, but it seems like things go right through my digestive tract after I eat. And right before I got out of the hospital, there has been bright red blood even when I don't "go", sometimes it seems like quite a bit. I do have some pain in my stomach and a loss of appetite, but those could be for other reasons. I have some experience with hemmorhoids, and can't see anything. I also have a decrease in urination. I know I feel like my health is deteriorating, so I can't think things through very rationally as far as significance. What could this be, and how big of a problem could it be?
As a surgeon I deal with it daily and perhaps hemorrhoids can be considered bread and butter of the surgeons. Your symptoms point to piles/hemorrhoids and there is nothing to be embarrassed about it. You should talk to your doctor about that, so this can be confirmed. Medications are many time responsible for the aggravation of the bleeding in the pre-existing hemorrhoids. Meanwhile you can try the following;
1) Avoid constipation by not postponing the urge to defecate; Many over-the-counter options helps speed bowel movements and decrease straining. Duphalac is best.
2) Eat a balanced, high-fiber diet; Increased dietary fiber of 25-30 grams / day. High fiber cereal can help reach this goal quickly
3) Drink plenty of water, liquids
4) Avoid excessive pressure and straining during defecation. Don't sit for extended periods, limit this time as much as possible
5) Avoid irritant foods, chillies and hot herbs and substances.
6) Warm sitz baths; this is universally soothing for pain and may help decrease the hemorrhoid size.
7) Local ointments applied in anal canal which contain xylocaine and vasconstrictors (OTC product).
The neurologist and the new PCP are suspecting I may have myasthenia gravis. I looked it up online, and I *do* have a few of the main symptoms.
1. I have double-vision many days, almost all day. It's fun to play with it while at work or home, but when I cannot control it, it makes driving scary... it can be difficult to merge the images at 70mph.
2. My left eyelid tends to droop, but according to the neurologist this is not my weak eye?!?
3. I often have difficulty swallowing. Sometimes it is even hard to swallow my medicine. When eating meals, it is an annoyance.
4. My "pulmonary function testing" showed that my breathing was noticeably "weak" according to the pulmonologist. Shallow...
5. Imagine this: I am holding a coffee cup full of... coffee. Suddenly, for no reason whatsoever, my hand "loses it's mind" and the coffee cup tips over, losing it's contents. I don't have an explanation, so I don't know what to say... I don't have a reason, so I don't know what to do. I have dumped more than one cup full of something just this week, once right into my lap, once into my pillow!
6. Sometimes, instead of double-vision, and especially when there is black text on a white background... I get a "grainy" image, sort of like the black is becoming more white where the text is. Makes perfect sense, right?!? Like bad reception on a television?
I get all kinds of visual tricks and treats.
Blah blah blah. Blah, blah blah blah blah. Aha - blah blah BLAH blah blah!!! Oh, I'm so boring, oh my, so boring. But truth is stranger than fiction. To me, these happenings are so bizarre and outside my understanding. But sometimes I feel like I'm losing more than my coffee!!!
New PCP gave me medicine refill from the hospital today to help get the pain back down until I see Dr. O. It doesn't hurt as bad, but I'm a little dizzy but the pain is lighter so it's worth the "dizzy". I believe this is still within the contract as long as I disclose because of the hospitalisation. I can't go back to work until Wednesday as I have to have another nerve block tomorrow. The Foot is poofed up like a shiny pincushion. Shiny me.
I'm not keen on the Spinal Cord Stimulator. Unless it magically takes the pain away, I don't think I'll be impressed. But I gotta learn first, right???
I'm so confused, Dr. Arun. And a bit scared. I mean, I can take these changes, but they gave me a permanent disabled placard today. That means I can get a disabled vehicle tag and a placard at my next renewal, and I never have to receritfy. But if I get better, I'm going to leave that far behind. . .
I can't tell if Myasthenia Gravis is a big deal or not. I know there is no cure (like CRPS/RSD) and I know it is rare (like CRPS/RSD) . So if I do indeed have it, I could indeed be a one in a million woman. There are many (millions!) of other ways that I would rather like to become renowned
Are they contemplating serologic tests (blood work) for autoantibodies and electrophysiologic studies (repetitive nerve stimulation studies and single-fiber EMG) for myasthenia?
Yes, new PCP said they already have the blood for antibody tests... but there was no mention of electrophysiologic studies. I didn't learn about those tests until I got home and read some on the internet. I'm hoping I can discuss that with Dr. O next week when I return to Ocala. Does that seem like something he can do if he felt such testing was warranted? I have a bit of a language barrier with new PCP guy, especially when he is rushed.
My thinking had been that my medications were causing such symptoms. But they are sometimes pretty annoying symptoms. I often find myself out of breath before I am finished speaking a sentence! And the vision issues don't help my balance recover! I just have to laugh, because otherwise this would have been quite a sorry year that passed by! Good thing I am so fortunate in so many other avenues. :-)
If that is the case, how serious is such a thing to live with? It sounds rather benign except for the double-vision and associated complications. I'm not too serious at this point, because time will tell.
It is not serious. Dr. Oregon does the electrophysiological studies himself, so he can be the right person, about it, to talk about. And as you mentioned, the side effects of the medications, too can be responsible, for the symptoms.
I just had a bizarre experience! I woke up and was putting some drops in my eyes, and I could see they were looking in different directions, so I got them to make the images one image, and then I stopped forcing it - my right eye just slowly drifted away from my left!!! I've never seen my eyes "float away" before! Ewwww! And then of course I had to do it again and again, but then I wondered if that would cause damage?!? Anything up close takes a real effort to get one image lately. How bad might this get?!? Do you know, or can you guess?
One thing that I really wonder about is that the images used to always be "planar", even though they were split. 90 degrees (like a plus sign "+") or 180 degrees (like a minus sign "-"). Lately, they've just as often been ... I'm trying to say more like an "X" than a "+" or "-" sign in relation to each other... This may be why got Kyle so scared and called 911 that partcular day...
Sorry for blabbering on about this, I know I'm not the first person on the planet to see things this way. New experiences, a little scary, a little exciting. What if there was no harm in seeing things this way, and there was actually something advantageous? Such as, new things could be discovered because conventional sight completely misses these images! And imagine the encoding that could occur in plain sight, but it just required this kind of a way of looking at things! I know, I am stepping into the realm of fantasy. Sometimes I think these things are only a step or a few steps from reality.
I haven't even said what I wanted to say, I don't think. I think it is something about the ability to encode in another dimension. I'm sorry. Maybe the need for sleep has driven me crazy, so I'd better try again.
Does not sound to be anything serious. Getting up from the sleep may sometimes cause this kind of phenomenon.
Once you hit 5,000 Accepts, I'm automatically convinced that you know Everything Medical... or is it Everything Health?
Good morning Deb,
It is all learning everyday. Swimming in this ocean to explore.
Thanks for your faith.
Ah, and what a poetic perspective you have on it...
Very Nice, and it also is all learning everyday!
Grace a vous.
I just want to say, you have helped me so much, and so often. This has been one of the more challenging years of my life. I have been so selfish at times, broke at other times, crazy at still other times... it is a wonder - you are a wonder!!! I think I am more resilient because of your guidance and knowledge - given with patience and friendship... and how does one thank someone for that?!? Watch as they prosper? :-) If I can't often pay! But your positive feedback rating would be unbelievable if it wasn't for how I have seen and been also gifted with how you share goodness here. Ah, you are a natural... :-)
I think I need a post-sympathetic block nap. I just wanted to express a little appreciation for you. If you ever get frustrated, you bear it well...
I am overwhelmed. I am grateful for your kind words.
Best wishes and kindest regards.
Aw, shucks... my son came up with a really cool word for your upcoming ...
Were we too early on the "Answer-versary" wishes?
Kyle wanted to know how you liked his word... sorry!
Great creativity. Hi Kyle, Loved it.
Sorry about this morning, I was trying to get him to school, and I could have just practiced patience (and as an example). But I also want to reward and inspire his creativity and cleverness. I don't always make the right call...
I could use some reassurance if you should find time. I feel like I am a resilient person, but the world is being confusing to me. I do still have a job, which is great, and they were talking about the rest of the year planning (which included me) so that's even better. But when I told my boss's boss not to look for my car next to hers anymore because I had the permanent disabled placard, she expressed happiness for me, and that 's confusing to me. I can't even believe I have medical/health issues - I used to be a good runner... :-) and still have the spirit.
But the constant pain is getting me down, so when I have minutes or even a number of hours where I do not think about the pain, I like that of course, and want to do what it takes to move more in that direction. Which for me I see the best option currently is an increase in the narcotics. Not forever, not permanently medicated, but for a while, for a break.
With the Dilaudid, I got closer. I don't have the same kind of responsibilities that I had last year at this time. I can afford to work a little slower as long as my quality is there. But it seems wrong to want an increase in the narcotics.
And then this Myasthenia Gravis. Aspects of it sound wicked, like suddenly being unable to breathe because your lungs are paralyzed?!? and you have to hope you're in a position (such as right there in the ER???) where you can be expertly assisted so you can survive. But even on the milder side of the myasthenia, it's frustrating to not be able to swallow at times, a little scary because that should be so easy. It's frustrating to try to straighten out double-vision, but I've learned that looking downwards helps, and it's a little scary that the double-vision comes on so easily during the day, more at work and on the ride home than in the morning.
I know if was my first day back to work again, but it seems my days are getting harder. I don't know if this makes sense but it feels like I just can't compete witth Myself lately. I'm tired. I'm unsure of the future (is myasthenia a good thing because it explains so many weird little things?!? And because so many people abuse narcotics illegally, I'm afraid to ask for stronger meds for myself even though I've seen lately that it definitely helps. Do you know why I was put on Dilaudid? Because we are having a Morphine Sulfate shortage here lately. The pharmacy said they are lucky if they get any in ther shipments, but then it's gone as soon as they get it. Ha!
This is too long again. I apologize. I need a doctor who likes reading books, eh?!? :-)
Well, I think I've lulled myself to sleep with the little ripples of the keyboard. Whatever happens happens, I am not actually afraid. I'm nervous, and concerned because I want to try stronger narcotics. I'm afraid what that will make me look like. But I am very unsure about a spinal cord stimulator. And here I go again analyzing things! Luckily the keyboard still ripples (except when I misspell, then I get something like a dump truck but without the warning beeps! heh.
If you have any advice that's great, if you want to tell me: at least I have proven I can still type bountifully (but my hands hurt!). I go to Neurologist #3 tomorrow, and hopefully things will work out with him. I was very upfront about that I have CRPS. I don't need to get dumped again because of that.
There was a sunken mood around all day, I believe it was not just me. Sleepy slump of the middle of the week, maybe... :-)
(time for bed, little deb...)
You can discuss the option of increasing the narcotics / Dilaudid with your neurologist. Most of the doctors are very open minded and I think they can make a better judgment on this, as they see and examine you personally. Being pain free would obviously be more productive and satisfying for yourself. There have been studies in which two groups of the patient; one with the self medications and other with the prescribed limits from physician, have studied. The studies have found out that most of the patients are better judge of the pain and thus the doses. Compared with the control group, where physicians prescribed the narcotic analgesics, this self controlling patients took lesser doses in long term. So discussing this with the neurologist should be helpful. Appropriate dose can be decided by careful evaluation of clinical situation, by you and your physician.
Good morning and have a great day.
I just want to say Hello, and I hope you are doing well... :-)
They are still checking out the testings on the MG. I'm not stressed either way.
Thanks for the update.
Have a great week end.
Almost there at 5,000...
Saw Dr. Hunter today, he told me he was working on a project with you. :-)
Yes, some very interesting projects.
Happy Holi. Holi is festival of colors.
Good news, now I have two things to learn about, Holi and brain plasticity.... :-)
I'm sorry to bother you. Just thoughts, it was a good morning and great night. The full moon was wonderful tonight. The air was just perfect to stand there and watch it.
But what I was going to say when I started to write was about the moon. And it's important to be standing there in time, watching the sun set as the full moon is rising. And it's important to be peaceful inside.
When I was younger, I used to travel every chance I could. I was a traveling consultant for a while there, and lived along the shore in New Hampshire. The moon was never bigger in my life than it was rising beyond the Atlantic Ocean. And there was never a better place to be than right there, in that moment.
So I had to go to California (other shore), but the closest I could make it at the time was Arizona for a conference. Big VP's couldn't go, and I wasn't even an AVP yet. So there I went, and every night I drove to Sedona to watch the sun set. And on my second trip out West, I was in Sedona, and it was one of the luckiest moments I'd had in my life, because the sun was setting on one side, and the full moon was rising. And I didn't understand why no one else was out there, because the colors were so brilliant it felt like a such a gift to be right there, right in that moment. And when I finally made it to California and San Onofre, it was coicidence, because there I was ... FINALLY made it to California, and I sat on a small cliff to watch the sun set, and yet again saw the full moon rising.
I watch so intently, Dr. Arun, and all at the same time listen and smell and feel. That is how I capture it. And it's not so I can tell someone how magificent it was, it's so I can bring it out all these years later, and those moments are still with me, still a part of me. I was on a date once, and the sunset was breathtaking so I stopped walking, and the guy laughed at me like I was stupid. I know I am different.
I felt like these times this morning, and tonight... tonight the air was such a perfect temperature and humidity, warm and moist, all those places and all those times, I think with so many challenges in my life it has been so difficult to be in the present, not pained by the past or afraid of the future. This is how nature taught me to be in the moment, though sometimes I forget. I never lose it. It's like it just waits for me to be patient and calm enough, you know?
I hope you are enjoying Holi. It is very nice here tonight.
Again very well written. I appreciate this. And I admire.
I saw the full moon, which was so bright on Holi. Holi is celebrated always on full moon day and Diwali, the festival of light, on no moon day. The Indian calender is based on the moon, so festivals are celebrated accordingly.
Nothing is better than the nature.
I can't sleep, so I'll just dream a little. I guess you have to let your pride/protections down some time, right? Reality is, I am a single mother, and ... how good do I have to be at self-disclosure? Ha! You have to be strong to be a very good single mother, and I mean VERY strong.
It's like crying in front of someone... some people can and will do it at the drop of a hat. I have to have something GOOD to cry about anymore... something REALLY sad or something that REALLY hurts, and it has to be someone I REALLY trust.
... (dumb change of point)
It's like the same thing with this bedroom set somehow a co-worker got for free and wants to make a hefty profit. They have a right, but they don't want it, can't keep it, and I was the only offer at $500, which is really more than I can afford, I'd love a new bedroom set. Like actual furniture. I don't have a dresser or a chest of drawers! Or even a real bed. But I did what I had to do in moving from Georgia to Florida. I moved with what was then an old tot, and is now a young man. Maybe it's all something I can work into that novel of mine, "The New 22". I hate that title anymore, it sounds like "Vicks Formula 45-D". :-) The novel has nothing of the tremendous effort of moving. I did not have "crews". or a truck! Hah!
I guess the point I am dancing around is I can close my eyes and travel the world, I can dream of the moon and the sun in places beyond my imagination. That's farther than a lot of people get, and I'm not sure where to settle. Peru is no longer a good place to go with a kid, lately... :-)
What will happen, will hapen in our lives. I think MIT assumes both parents will contribute to tuition, so heaven help me then... :-)
I don't think I'll stop dreaming. I just want to go to bed now.
(This was not meant to be a boo-hoo-hoo. On the contrary, although I may be rather reserved in person, I feel and think A LOT!)
Good night, and good day. Thank you for being there, and for your feedback. I meant it when I said I have grown from knowing you.
When I make some millions, we'll travel the world - NO doubt! :-)
Do you know of any effective "home" recipes for strong anti-nausea/vomiting? This is the 2nd night I've been up, it is an aweful feeling. Anything! Not to mention I am wastng my pain mediciines, etc
Sorry for this delay. Was doing consultations. You can try Pepto-Bismol or Kaopectate, if you have that. Dimenhydrinate (Dramamine) and meclizine hydrochloride may also be tried which are again OTC.
Not much coming in my mind about any home remedies. My mother used to give something, which I am unable to find any equivalent in English/American, I am afraid.