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brethor9

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  1. Hi All!

    This was sent to me by a good friend...I thought it says so much about this illness we are struggling with and the struggle of having people understand it......

    The Spoon Theory

    by Christine Miserandino www.butyoudontlooksick.com

    My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

    As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

    I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

    As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

    At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; **** I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

    I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

    Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

    She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

    I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

    I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

    I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

    We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

    When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

    I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

    Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

    After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

    Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

  2. Hi Guys

    Need some input please! For the last 2.5 weeks I have been suffering from severe stomach pain, bloating, swelling etc. I have come to the conclusion that it could be side effects from the 0.05mg of Florinef I take daily as I just started it a little over a month ago.

    So yesterday while at the pharmacy I asked the pharmacist if indeed Florinef can cause stomach issues and she replied most definately and very nasty ones. I already suffer from GERD and have had ulcers in the past. I will be seeing my gastro on Friday.

    Long story short if I have to stop the Florinef is there anything else to substitute with? I had tried Midodrine prior but it gave me wicked headaches...the Florinef has definately helped my endurance but if it is causing these horrible issues I cant stay on it. :( (I have the hyper based POTS)

    Thanks

    Bren

  3. Hi Lieze

    I live in Ontario Canada, I was diagnosed at Hamilton Hospital under Dr. Carlos Morillo...the specialist I see based it as hyper because my catecholamines (norepinephrine/ beta adrenergic) were highly elevated even in supine position and severely elevated on standing...also when they injected me with the adrenaline medication I had the most sensitive reaction he had seen...literally within seconds on a pediatric dose I was crying, shaking uncontrollaby, etc and my heart rate was through the roof...so I guess based on that he said I am most likely the hyper kind.

    Bren

  4. Hi

    So I was just recently diagnosed with OI/POTS with Beta Hyperadrenergic sensitivity and high levels of norepinephrine.

    My current med regimine is florinef .05mg daily. I was started on Bispropolol but could not tolerate it because of chest tightness, fatigue even on a tiny dose. I have severe allergies so I suspect that the beta blocker makes these worse?? Also I do not think the Florinef is going great as I am having severe GI pain and puffiness, chest pain, bloating, severe breast pain, etc

    My real question is....for those of you out there with high levels of adrenaline and norepinephrine what medications have worked best for you?? My specialist has mentioned an SSRI or Lyrica but I am terrified to try as I did that route last year and reacted so severely to the meds.

    Has anyone had great luck with SSRI'S? if so what dose is most tolerated??? Is there any med to definately steer clear of??? Appreciate any input :)

    Bren

  5. Hi guys

    Thanks for replying! Just wondering?? I have been told by several people that Lyrica is not great because it makes you gain major weight? Did any of you have that issue when taking it?? I am in no means vain but am very small boned and have weak joints therefore any huge weight gain is really hard on my system (gained 50 pounds with my son and almost ended up in a wheelchair..water weight thank god lol!) so i am trying to get a good sense of the pros and cons of this drug

    thanks

    Bren

  6. Hi Guys

    Hoping I can get some feedback on some health issues I have been having in the last couple weeks??? For almost 2.5 weeks now I have been having excruciating stomach pain and bloating. When it first started it was just under my left ribs and then branched out into my upper abdomen and now is radiating into whole abdomen and back on the left hand side.

    I cannot see my specialist as he is away for a month (arrgh!!!) and cannot see my gastro until friday.....any ideas on what could be causing this pain?? I had my gallbladder out in Jan 11 so it cant be that....the only thing I can think is that I started Florinef around the same time...maybe a week prior to the onset of these issues.

    I notice some other symptoms also, like my allergies are uncontrolable, shortness of breath, my breasts have gotten so painful and large since starting the florinef (I know its florinef because I was having signs of inadequate hormones prior- my breasts were getting smaller)

    HELP PLEASE!! I am in agony! I cannot go to my emerg because they never take me seriously and I do not have a GP. Can I stop the Florinef to see if it could be causing these issues?? Anyone have anything similar happen to them???

    I hate this disorder with such a passion....:(

    Thanks

    Bren

  7. Naomi I can totally relate to you.....not sure where you live but here in Ontario we are having one of the worst heat waves ever and it is wreaking havoc on my POTS. Like you my head pressure and dizziness is brutal!!! I have actually stopped my Florinef because I find it is making things way worse with this heat....retaining way too much fluid. I havent taken any the last 2 days and feel much better...will start again when heat settles down...Do you find in the heat you retain more fluid? are you taking florinef also?? staying extra hydrated of course helps....like we dont suffer enough without the heat lol

    Hugs

    Bren

  8. Hi guys!!

    Me again!! Sorry for all the questions but this is so brand new to me I just cant wrap my head around it all.

    So I was seeing my rheumy specialist (not POTS) and talking with him about all these crazy symptoms etc and we were discussing how aside from all this I have been having some nerve/ and pain issues. He mentioned maybe starting a medication called Lyrica as it is supposed to be good for nerve pain and pain management of different kinds. He also mentioned that it is sometimes used off label to treat anxiety related symptoms because it affects GABA receptors. (Interesting enough the only meds I have ever had any luck taking are benzo's likely because they act as a sedative on the CNS and ANS)

    He wondered if it would be helpful to me with my POTS symptoms also as I have been diagnosed with high levels of norepinephrine and adrenaline and it may help with some of that. Kill 20 birds with 1 stone and all that lol...

    So I guess my question is does anyone take this medication? does it help or make POTS symptoms worse?? better? does it help with chronic pain? I would appreciate any advice.....

    Many Thanks

    Bren

  9. Hi all!

    Recently I was started on the drug Florinef to help aid with my low blood volume and pooling issues. I have definately developed a love hate relationship with it. Currently I am taking a 1/4 tab a day I am trying to notch it up to 1/2 but find when I do that my head pressure gets worse, my breasts (sorry tmi) get incredibly sore, I get really irritated and agitated and just feel off. When I stop and dont take it at all the results really arent much better.

    So my question is; how do you know when this drug is doing what its supposed to??? and do the side effetcs eventually get better?? The irritabilty and agitation are the worst....I'm a complete bear lately lol.

    I am also taking a beta blocker and suppose it could be causing issues too; I'm just not sure which one is doing which??

    Can you guys tell me the pros and cons, side effects of florinef??? so I have a better idea of whether I need to keep i going or not

    Many Thanks

    Bren

  10. My senses have definately been affected since getting sick with this disorder....funny enough I am finding it very similar to how my 8 yr old autistic son describes how he feels...the sensitivity to light, startling easily to sounds, texture...all very similar....I am definately more understanding of his struggles everyday just to filter out what normal people take for granted.......having an overactive nervous system is exhausting!!!

    Bren

  11. Hi Guys

    WOW! I am amazed to hear that so many of you suffer from similar episodes!

    CHAOS- I know what you mean about the catecholamine testing because the same thing happened to me. When I had the autonomic testing for the catecholamines ie adrenaline etc for weeks afterword I couldnt even walk...(Its like a feeling that my feet are being pulled through the floor, major lightheadedness, no balance, just really bad!!)I know its somehow related because one of those tests involved shooting me with pure adrenaline and I reacted within 5 secs...definately not normal!!

    LIEZE- you are never a dork! We are all here to learn and ask questions :)

    So I think it is a plausible theory that in those of us who are extremely sensitive to or have already high levels of catecholamines could be experiencing dumping in times of elevated stress or pain. That our systems become so flooded that it could take days or weeks for it to disperse because we are literally drowning in it..... Its funny I never would have related it all if it wasnt for this other specialist mentioning the pattern coinciding with pain episodes.

    The other question would be why does the blood patch help?? His theory to that is; because I experience pooling in the extremities and the patch infuses a large amount of blood back into my upper body that it could be providing symptom relief because blood is circulating better....weird concept but with the way our systems are I suppose its possible. I hope to have an answer from my ANS specialist soon as I am really curious on his take on it....

    Thanks guys!

    Bren

  12. Hi All!!

    So I have another odd question I am looking for input on?? Over the last year or so I have been having alot of issues with my spine, nerve pain etc.....about 6 months ago I had a spinal tap to rule out MS and other diseases unfortunately a few days later I developed a spinal fluid leak and had to have a blood patch. Here is where it gets weird; when the specialist did the patch initially it mirrored all of the severe head pressure, etc I had been suffering only amplified by 1000...then 2 days later I was almost symptom free!!! That lasted for 3 weeks then I hurt my back again and within hrs was completely bedridden by symptoms again....a 2nd blood patch followed...again with the same results...weird right??? I was doing ok until last week when a uninformed Dr in emerg decided he was going to adjust my spine without even asking my history (frightening right?) before I knew it the damage was done...again several hrs later I was unable to walk and bedridden for over a week to present. My specialist is doing an MRI to rule out a CSF leak but his other theory is this.... when I get hurt or severely stressed could my body be catecholamine dumping?? and causing these strange episodes??? I have been diagnosed with very high amounts of adrenaline and severe sensitivity to norepinephrine......these episodes literally make me feeling like I am having a stroke...severe lightheadedness/head pressure, neck pain, complete loss of balance, migraine, massive surges, nerve pain, burning toes, numbness in left arm,chills..the list goes on and it lasts for days to weeks...does anyone know anything about catecholamine dumping syndrome?? I am still waiting to hear from my specialist...I would love any input

    Thanks

    Bren

  13. Hi Everyone!!

    First off I just want to say thank god this forum exists!!!! If it wasnt for all of the people on here and the wealth of information I would know absolutely nothing about this disorder! So brief background; I am a 36 yr old wife and mother of 1- 8 yr autistic son. 3 years ago I started suffering from subtle symptoms at first..mainly 24/7 head pressure with lightheadedness fast forward to my partial hysterectomy in 2008 and suddenly afterwards I was completely engulfed by physical symptoms I had never battled before mainly absolutely horrid adrenaline attacks which my fam GP passed off as panic attacks although I had never ever suffered anything like that. Over the next several years more and more distressing symptoms came about......episodes where I literally felt like I was having a stroke, severe balance issues, severe lightheadedness, mottling in my legs, my body temp would tank so low I would be having hot baths 3x a day just to keep warm and yet once I was in became so hot I had to get out. The worst episodes came at night...adrenaline surges that would wake me from sleep with pounding head pressure, loss of balance, heart rate through the roof, shakes so bad, sweating and then chills so bad...these episodes would last for hours and were utterly exhausting and terrifying.... emerg would do nothing. Finally after firing my GP and stumbling on some good specialists I was sent to an autonomic facility at Hamilton Mcmaster Hospital here in Ontario Canada where they finally diagnosed me with; POTS with beta-adergenic hypersensitivity and highly elevated norepinephrine at baseline and upon changes in position along with hypovolemia.

    I have been started on a beta blocker (which I find causes nothing but chest tightness) and florinef which helps but I find finding the right dose is difficult.

    I also suffer from severe spinal pain and have been having some nerve issues because of that.

    So my question to everyone one is....am I considered to have Hyper-POTS? what medications have been the best for others? Does anyone suffer with nerve pain and is there a med they can recommend for that??

    Sorry for the long post....its so overwhelming!! and when you finally find people who understand....I just dont even know where to start lol!!

    I would love to hear from anyone any advice or guidance would be hugely appreciated! Here in Canada this disorder isnt heard of much....makes it hard to get good information

    Many Thanks!!

    Bren

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