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Erika, it's good your home and the surgery is past.
I miss the friends I had when I was younger. I have no one "in person" now, only on-line. On-line is really good, though, for a lonely person. I told you I had to drop my church because of toxicities in it. This is the third time. No one has cared to look me up any time this has happened (dropping out because of toxicities in the environment). Someone will bring me a poinsettia for Christmas "because we thought you were one of the people who need it"). I am going to tell them don't come this year. I need a friend who is here more than at Christmas. But I'm never going to have one again. Obviously I am depressed. Yesterday I felt well, quite up, did baby sitting until too late in the evening, but I was in bed by 11:30. However, I never slept because my skin itched from Polycythemia Vera and nothing helped it. Nothing helped at all. So today, depressed and exhausted all day. My life is now a sine-wave, I've been noticing it more and more. I try to keep a level life, never overdoing, but no, I have an up day followed by a down day. And the down is really down. I went out in the car and looked at beautiful Christmas lights today, and remembered when that was something Irv and I did. Very lovely, even if I can't do it myself. |
:circlelove: ((((((Mariel)))))) :circlelove:
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My whine (or is it a kvetch?)
OK, so there are how many people in the US who have MS, like 350,000? And how many millionaires in the US? You mean we really had far better odds of being millionaires?
Really? Maybe I'll have a better attitude tomorrow... |
Some millionaires are more crippled than any person with MS, because their disease affects the mind, not just the brain and nervous system.
I saw a news clip recently that even put a name to it..."Affluenza." I sure hope that it isn't contagious :winky:. With love, Erika |
Ouch!
My hand joints have flared up again and are so stiff, swollen and sore, that the fingers can't be bent or straightened all the way. I'm typing with the two finger tips on each hand that aren't screaming. I'm just belly aching (literally as well), because I think that I know what caused it...my own stupidity :eek:. My friend brought me a home made butter tart as a treat last night, and I ate it. It was absolutely delicious, but for one who avoids sugar and doesn't eat wheat because they inflame my digestive system, it was the height of stupidity to indulge. Apparently those things also inflame my hand joints now too. So now I'm paying the price. Lesson learned. NO more Christmas treats! Passing the cheese... With love, Erika |
Erika..nooooo sweets for Christmas? You poor thing, with your hands
hurting and everything hurting and no treats to soothe you? Ugh!!!:( Maybe if you started out slowly, with just a little sweet and to see how it goes? I'm so sorry for your pain and hope and pray that you feel better soon.:hug::hug: |
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They claimed that he wasn't responsible for his actions because he was wealthy, his parents had never taught him boundaries, and he shouldn't have to serve time for killing four people. So he's doing 10yrs of probation, and some court ordered counseling. This is after the same kid didn't get any punishment at all for being found a year before drinking, driving, and having a naked 14yr old in the car with him. (he was 15 or 16 at the time) They should have just put that kid in jail and let him stew for awhile. No contact with his money or alcohol. |
Erika,
Sounds like your body's being "Scrooge"…hope you feel better soon:hug: |
Erika, those of us who have "managed" illness with diet have put ourselves in a bind, perhaps? If we get off the diet, we suffer. That's what happened to me when I would get off the Swank diet by eating red meat--I would lose my balance, almost fall over to the right side--it is actually funny thinking how that would happen. The last time it happened I assumed it was now permanent, a progression, but it is completely gone now, the falling over to the right. No red meat, of course.
But I have other dietary restrictions and I pay heavily if I get off of them. I loved that movie where the woman goes to Heaven and she is asked what she'd like to do first, and she said, "eat a bowl of spaghetti without feeling guilty". Fortunately for me, I have no problem with wheat that I know of, or gluten, so at least I don't have to have THAT restriction. Cake is actually good for me in small amounts, because with Porphyria one has to have a certain amount of carbs, but of course too much cake would upset the Swank too, if it was yummy cake with fatty icing. Mmm, I love fatty icing. I go to the Blue Nile jewelry site and look at the beautiful rings which I must not afford, or I won't be able to buy something I really need, or Christmas presents. So, that's the same thing, drooling over stuff I can't have. I'm sorry you had to pay a big price for that indulgence, Erika. |
Whine...whine...whine...I have lots of that, but am fresh out of cheese.:D
It's been weird. The Modafinil has me feeling "perky", but the body is still doing the inflammation, spasm, pain thing Most of the hand joints have improved since yesterday, and I can at least bend and straighten them better, but the guts are not liking the ibuprofen I've been taking to decrease the inflammation in them. I barely ate a thing yesterday. Just a bit of apple sauce and some vegetable soup. Now along with the thumb joint on my left hand, the baby finger on the right is also subluxating. I can't put pressure on either one, without them bending in a direction that they're not supposed to go in. The thumb doesn't hurt too much because it is pretty much numb, but that baby finger still has all the feeling in it and Wow, can such a little joint hurt a lot. I've learned to avoid using the thumb, but I keep getting a painful reminder from the baby finger because it presses down on the computer desk as my hand moves the computer mouse or when the handle of my tea mug pushes on it when I lift the mug. I put a thick bandage on it this morning to help me remember. Then yesterday afternoon as I went to get up from my chair, I pushed down on the arm rests to help my body stand and the baby finger screamed. Not thinking, I let go of the arm rest, stumbled and caught myself from falling by slamming the same hand onto the coffee table. My left shin connected with the coffee table and then I heard it, more than felt it. But I've been feeling it ever since. My right shoulder joint had joined the subluxation conspiracy. I've had that one operated on to repair a dislocation/fracture due to a fall many years ago, and it does subluxate from time to time, but I sure didn't need it to be doing that now. That's the side I usually hold my cane on, so between the joints of the thumb, baby finger and shoulder, I've been reduced to palm & knuckle walking on the walls, tables and counters because my left shin has a painful goose egg swelling on it from hitting the coffee table. At this rate, I'll be going in to my PCP's office on Thursday carrying a bag of joints and appendages that have fallen off :eek:. I'm starting to feel like that guy in the Monty Python movie, who in the end is only a torso with a talking head, that continues to proclaim "It's only a flesh wound!" Man I love that movie! Sing it with me now, "All I want for Christmas is"...a full-on hockey goalie uniform; complete with the helmet, face mask, shoulder, back and chest guards, knee and shin guards, big padded gloves and padded pants! Passing the cheese... With love, Erika |
I go for the risk analysis with the oncologist today. I think my risk of actual breast cancer is low, but one of the spots on the left side is still healing and oozing a bit but not blood. If I never have to have surgery again it will be fine with me.
I finally got the paperwork from the local neuro yesterday and faxed it over to my HR contact. It was a bit depressing reading that the condition is permanent and I will need the chair indefinitely, but I am really relieved that I will have it if I need it. Next I will tell my co-workers why I need it though my boss said I can just tell them it is none of their dang business. ;) Now I'm thinking about a placard for the car because there are times when it is daunting to walk a long way across a parking lot until I get a cart I can hold onto. Ok, that is my serving of whine for today. :D |
So sorry to have to welcome you to the Gimp Club, Wiz.:mad:. You are so
brave, to march forward, no matter the obstacle. May you always have that inner strength.:hug: |
HP placard
Wiz, I got an HP placard about six months ago, and I just use it when I really need it. I figure that I don't have to use it all the time just 'cause I have one. And if there's only one space, and if that space is wheel chair-accessible, I really do my best to suck it up and park in another space. But the point is that it's OK to have one, even if you don't need it all of the time.
Sorry about all of your troubles, Erika. Wish you could at least have some cookies to soothe your aches and pains.:( |
Ok, I met the oncologist and he was a very nice doctor, he worked at both Rush and Northwestern in Chicago and he is the medical director of our local cancer center.
He thinks it might benefit me to take a breast cancer suppressing drug called Raloxifene, or Evista. He gave me the RX but does not want me to have it filled until he does some research related to MS, the drug and the other meds I take. That alone speaks volumes IMO. He said that my lifetime risk is about 18% of breast cancer and around 3% in the next five years. The Evista cuts that in half. My risk might be higher though because I don't know for sure if my late sister Laura ever had breast cancer. Both of her daughters have had other forms of cancer. The main side effect with the drug is an increased risk of blood clots. There is also a possible side effect of leg cramps which I already get a lot of at night when I'm relaxing. So we'll see what he finds out. |
Erika,
I hope you will feel better soon, you have been through so much. :hug: I also have to avoid holiday sweets because they make me feel sicker. :rolleyes: People at work try to push them on me but I always refuse. It isn't always easy either! :hug: |
I am so tired of feeling this way! I have so much left to do for Christmas, then the new year, then my birthday, then my son's birthday. I can't be doing this downward spiral right now! But I can't get enough sleep, there's more pain every day , my breathing is getting difficult again (it does every time I have a flare, but not enough to go to an ER) and today my left arm is weak and hurts. Oh and let's not forget my vision getting worse. :(
Ugh, I just want to enjoy time with family and not make my husband and kids take care of everything! Ok done whining, now to find the strength to make dinner. |
:hug::hug::hug: nemsmom :hug::hug::hug:
With love, Erika |
Newsmom,
Try not to overdo it. I understand where you are coming from but you need to slow down and maybe let others help or possibly order take out food for meals or get some help around the house with the kids. :hug: |
Wiz, you will feel so much better with that handicap placard. Like you I only use mine if I am having a bad day. In the summer I do use it more because I need to be close tot he door when I leave. Now when I get to the store it's another story. Being in the air conditioned car I am fine. But going in, shopping, having to put the bags in the car, I need that space. So far I have never had anyone question why as an able bodied 'looking' person that I have it. Now my husband on the other hand would use it everywhere we go. It gives him a bigger parking place and the car is more protected. Bless his heart. Isn't he glad he is married to some one with a disability that requires a tag. If I die before him I'm sure that will be his number one requirement of a new wife. She has to be disabled. But I refuse to let him park in one if I am having a good day. And now that I am in better shape physically I usually do feel like walking. One day he parked in one anyway so I got out and walked around the whole building and made him late just to show him and anyone watching that the car was not parked there for my purpose.
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The holidays gatherings will not be here at my house. We go to our parents houses, that makes that so much easier. My birthday, my hubby usually takes care of everything that day so I can just relax, we are having friends and family over to play cards that night but that's not a big deal. My son's birthday will be a lot of work, but thankfully that is the end of January, we just have a lot of family birthdays in between mine and my son's. I am taking it as easy as I possibly can with having two kids ages nine and six. They are good kids, they know how to take it easy on me when I don't feel well. It's the thought of how many things there are to do right now I think that is kind of stressing me out, but breaking it down like this helps. I just want to be able to do this without all the health issues. Oh and the handicap card, it is so good to have. I am another one who only uses it when I truly need it. But it is so good to have it when I do need it. I do get dirty looks when I use it, but I'm 29 and look healthy. Okay I have fallen asleep three times typing this, I think it's nap time. ;) annd now I'm wide awake. The silly fire alarm decided it had to beep, just three beeps, but that was enough to trigger this headache to keep me awake. :( What I was trying to say was, even with as easy as I'm taking it, things are getting worse. It is just so darn frustrating!!! :mad: Thank you all for your support! |
My daily rant is that I slipped on the icy parking lot while hobbling to my car. I should be sore and have a good bruise on my left knee tomorrow. My left hip will also be sore because of the fast twist before hitting the pavement. But I never dropped my purse or the two china coffee cups I was carrying! :D Now, I will printing out the form for the placard and taking it to the neuro's office tomorrow or early next week when I pick up my monthly RX. That was a good way to get me in motion for doing that! :o
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Arrgghhh Wiz…your hip will not be a happy camper for sure. Use that placard always-even if you feel well going into a store, you never know how'll you'll feel by the time you come back to the car. Take it from the voice of experience;)
Hope you recover from your slip soon…good job on not dropping your china! |
So sorry Wiz. :hug:. I hope you don't pay for being such a graceful tumbler.
I would have dropped everything and probably skidded into the path of an oncoming bus.:D |
I just made my dad go see his cardiologist. Turned out to be nothing, but I'm not sorry.
My dad's left arm has been swollen for the past week. My dad just pointed this out to me when we were at a restaurant eating lunch. It was noticeably swollen. My dad got a pacemaker last august, and the stuff they gave us to read about it, said that if he had any swelling in the left arm, that there was potential for a blood clot, and you should have it checked out if there was any swelling. So, I made him go. They did an ultrasound on his arm, and said there was nothing wrong there. Dad thinks he hurt it when he was at the grocery store. Said he whacked it on a shopping cart, and he keeps bumping it. The doctor thought that's probably how he hurt it, but he did say that it's a good thing that I made my dad go get it checked out, because just looking at the arm, he would have been concerned too. Seeing how today probably would have been the last day the office would be open for the next week too because they pretty much close for Xmas next week. Good thing we went today. (they'd be open, but it's half days for just two days) Now I don't have to sit here and be worried all weekend about his arm swelling. Dad's a little peeved that I made him go, but after I explained my reasons for it, he did say that I was right to make him go. He just didn't really want to go when I made him do it. (I called his cardiologist's office, told the nurse what was going on, and she talked to my dad and convinced him to come get it checked) So, nope...not sorry that we wasted our afternoon at his doctor's office. They got him in and out pretty quickly actually. When it comes to parent's health, I'm not screwing around and waiting on stuff like I do for myself. My mom nearly died on thanksgiving. She had some sort of weird internal bleeding. Her hemoglobin was 5 when we took her in. They had to give her 4 units of blood, and she was close to having a heart attack because of it. Still don't know exactly what caused her problem. She got a letter from the doctor today telling her it was probably related to her using aspirin. |
Absolutely you did the right thing with your Dad, Erin.
All too often people dismiss things like that and end up in critical condition...or worse. It is always better to be safe than sorry, especially when folks get older and have pre-existing conditions. Glad that it turned out well and that you can all relax now over the holidays :). With love, Erika |
Aspirin can be powerful. I take the equivalent of a baby aspirin daily, that is, l/4 of a "regular" non-coated aspirin. I powder it and mix it with cream and rub it into my skin. Some say I absorb it that way and others say I don't, but I have evidence that I do. Recently, someone on the Polycythemia Vera forum I go to said that taking a whole aspirin daily (equivalent of 4 baby ones) would help with foot pain. I tried it for five days, and then I had a nose bleed. This is not something I ordinarily do, that is, have a nosebleed.
So I went back to my usual dose. Those with Polycythemia Vera (PV) usually take aspirin unless their innards rebel. My innards rebel, but I am not harmed by rubbing it into the skin. |
Ouch Wiz!!! :hug: Hope you feel better soon!
Erin, so glad you made him go in! |
Erin, so glad you were the wiser head and called the doctor's office. Dad's always want to be so strong and take care of others. For most men it's just part of their nature.
Glad that they finally decided what caused your Mom's low hemoglobin. I think I am going to have to switch to chewable baby aspirin. Almost daily I am seeing a little yellow tablet in my stool. I guess I need to go add that to my list of things to talk about when I have my annual physical in a couple of weeks. |
my dad remembered that my mom's biological father died from unexplained stomach bleeding. (he died when mom was 2. She doesn't remember him) Think my mom's sister reminded my dad of that when they talked on the phone the other night. So, dad has to remember to tell the doctor about that when they go back.
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For sure that should be put on her medical file...in BIG letters. That is nothing to mess around with and is often missed because the bleeding doesn't always show up on occult stool tests.
Some GI bleeding can occur on the outside of the intestines, colon and even in the liver, so it doesn't show up in the stool, especially if there is a perforation. Good thing that your aunt mentioned it. With love, Erika |
I'll tell my dad that. He might be a nurse, but he was a nurse anesthetist, and was usually more interested in making sure patients were asleep and not in pain/aware of things going on. He might not know everything about things that can happen in other parts of the body.
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Did I push too hard or make the body do too much? I don't know...but I sure wish that I could figure out what the trigger is for the joint Sxs.
It was doing OK for the past few days but yesterday afternoon it started to ramp up. That has never happened before. It usually gets worse at night after the joints have been still for a few hours; yet I was up and doing light chores when I realized that my finger and wrist joints were really starting to ache. I took a Celebrex but it did nothing. By midnight it had gotten worse and anything that had been inflamed in the last 2 weeks fired up as well; shoulder, left knee and shin (where I whacked it on the coffee table when I fell), jaw and neck muscles. I've been up and down from bed ever since, trying different things like extra Baclofen, self massage, ice cold water soaks for the hands, Biofeedback, meditation etc. No change. If anything, the joint Sxs are getting worse, but I'm forcing them too move or am moving them with the assistance of the other hand. I'm typing this without bending my wrists because it hurts too much to bend them, and am using only the first 3 digits on each hand because the thumbs and pinkies are too stiff to participate. I'm supposed to be cooking a turkey today for the Christmas meals that will go out to shut ins later, but I think that I'm going to have to call my friend to put it in the oven because I just don't know how I'm going to lift it (28 pounds), with the hands and shoulder the way it is. I did prepare the stuffing mix yesterday so only the bread crumbs need to be added, and the bird stuffed, so we're OK there. Same with the vegetables. They are all cleaned and prepared for cooking; so I know that we will get it done by this afternoon. If this joint stuff keeps up though, I will be giving serious consideration to getting some real wine :eek:. In the mean time, I've decided to not take any more meds, other than LDN for a bit, because the body feels toxic. Maybe the liver and kidneys have just hit their limit with these new drugs and trials, and need a rest. I sure hope that is it. Passing the cheese... With love, Erika |
I've been down with a head cold for the last few days, so as you all know, symptoms get fired up at times like that. I haven't been posting much because cognition was off and energy was pretty low, along with having to deal with increased inflammation, spasms and the HUG.
Glad to report that I'm finally starting to feel better today...just in time to ring in the New year :). With love, Erika |
Erika, probably getting off as many drugs as you could helped, reduced toxicity. I'm so glad things are better now. Don't go back to any drugs you can avoid.
I see more people ill now than ever before...just in the general population. There are all sorts of theories going around as to what has caused this. I am not saying any are correct or not correct. One is that we are receiving more radiation from Fukishima, which lowers immune response, allows more "visitors" to get the upper hand in our bodies. I am having more pain than usual in places where I don't usually have pain, but I'm coping pretty well. My shoulder's hurting, and therefore I must get back to PT. If I lose the shoulder I will not be able to cope as well in keeping the house up. I did 45 minutes of PT last night...and took a walk in the dark with a flashlight...so far, no worsening of condition for this exertion.... |
I am having a really really bad day.
Bad week actually. MS is being a pain in the...ahem! and I'm also starting to have issues with the frozen shoulder again...I think. My right shoulder and my neck on the right side has been hurting for a couple of weeks. Tonight my left shoulder/arm was hurting again for the first time in several weeks. At least one good thing happened this week. My favorite tv show (a British tv show called "Sherlock". a 21st century version of the original stories) started their new season on wednesday. So at least I have something to distract me a little bit. I had to put a program (a legal one) on my computer so that I could watch it on British websites, because it won't be aired on American television until the 19th. (I couldn't wait. I'm impatient, and kind of jealous of the Brits. We've all been waiting two years for the show to come back. It was worth the wait.). Can't wait till it airs here, because then I'll be able to buy an iTunes download of the show...and the dvd's I preordered three months ago will finally arrive. |
Sorry to learn that your shoulders are giving you the gears. Are you going to PT, or continuing to do the exercises? Its really important to keep doing them even if/when things feel OK, because they will help to prevent the inflammation and pain from settling in again. Shoulders can take 6-12 months to heal properly.
Hope that it all comes around for you Erin. You are right...these constant MS Sxs are a real pain in the ......! Mine are continuing to cycle round and round too. I want to get back to work in a meaningful way but the body is not cooperating. I went in for 4 hours yesterday morning and was in bed by 5:00 because the body was aching, exhausted and I couldn't stay awake. I have been up every hour or two ever since, and this is how it has been going sleep-wise for the last couple of weeks. I'm still off of most of the meds but am back to taking Baclofen for the spasms & HUG that comes on at night in a big way, as well as Ibuprofen for the hand joint inflammation. Other than that, I spend a lot of time doing exercises, stretching (yoga) and meditating; which all help. My current distraction.: the spring edition of my garden seed & supply company's catalog arrived yesterday. It puts my mind in a much nicer place than dealing with the snow and ice outside, never mind these symptoms. It also allows me to procrastinate more whole heartedly over delving into doing the books for my company's year end and preparing my personal income tax for the accountant. Thinking about the heirloom tomatoes, giant pumpkins and vegetables that will be growing outside in just a few months time is far more satisfying and uplifting :D. With love, Erika |
Erin and Erika:grouphug: hope you both feel better soon…
I get off of blood thinners after today and will be able to take more of my meds as of tomorrow; however I am going to give my body an extra 24 hours to rid itself of the warfarin beforehand. The PT is causing so much pain and discomfort!! My knee hurts more than it has in 2 weeks, which is understandable since the new PT is really pushing the range of motion, as well as deep massage for the blood and lymph system in that leg to get the swelling reduced in the knee to allow for more movement. She discovered that after years of compensating for the knee I have not been using the right hip-it doesn't move up and down during my gait. So she gave me 2 exercises to increase the movement. It has caused so much pain across the iliac crest and between the pelvis and sacrum; I get that zinger when I move it weird. I am going to tell her today during my session. I am also tempted to let my neuro know about the flare up. He really can't do anything for it, but should he be informed? I'm glad the knee is working well, but the pain I've been dealing with has me in a tizzy…and I can't have any whine until I'm off of blood thinners;) |
Is it fair to whine for no particular reason? I just feel like whining.:rolleyes::o. I'm
getting older by the hour, DH is gone, DDog is gone, I can't walk very far, can't drive anymore, don't go anywhere, my beloved spontaneity is gone and so are most of my friends.:( I'm not sad just really perturbed.:mad:. I am still so thankful to God, for all that I have and all that I am able to do. I hope all of you with "real" physical complaints, are all better soon..:grouphug: |
Sally, I could of written your whine myself! All the same for me except for the doggie. :rolleyes: I know just how you feel.
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I am so tired today.
My dad was trying to get me to go out for lunch with my mom before I was supposed to go to PT. I thought I'd be able to, but when I went to get dressed, I was trying to put the stupid AFO on my foot, and could barely manage it. Got it on, but by that point, I was super tired and felt exhausted. Told my dad I didn't want to go after that. Made my mom really really mad. I managed to go to PT, but was super tired there. I had them do all the shoulder related PT stuff first, then the MS PT after that. I'm just really feeling frustrated. I've been feeling like crap since early summer. I tried to do PT then, but got kind of sick from whatever was going on with me at the time. When I started to come up for air from that one, then my dad had his health stuff going on, and my attempts to try to do PT kept getting stymied, and every time I tried to do anything to keep from getting any weaker feeling, I'd have to back off on doing anything for myself because one of my parents was having something going on. I got done with the PT today, and my dad wanted me to go out with them for dinner. I just couldn't do it. I almost should not have gone to PT. One thing I did notice at PT, was that some things felt easier to do today, and some didn't. My parents went to get dinner without me. Brought me something back, but I'm getting annoyed that I keep getting blamed by my mom for her not getting to go out. I can't help it. I *don't* feel good. My dad, who is sick with serious heart problems is pretty much pushing himself half the time to cater to her whims. My mom can't do stuff either. We refuse to let her drive, because she's not safe behind a wheel. (I've been run over by her enough times when she's using a scooter at the grocery store, to know that we wouldn't be able to afford the insurance). My mom gets mad because we won't let her drive. We just can't. It's not safe for other drivers. I'm still peeved at whoever she talked to back when she had West Nile. She asked someone there if she'd be able to drive again, and that moron told her that "sure!". My mom for some reason doesn't remember that the last time she drove was in 2002 or 2003. She thinks she was driving up until the point she got sick. I like to think that I'm being a bit more responsible with driving. Right now, I just don't think it's a good idea that I drive. I want to get hand controls, I just haven't been able to do it yet. Just haven't had time to get the car converted over yet. I'm exhausted tonight. Other than obsessively watching my tv show still, I just don't want to do anything other than read or sleep. also had a slightly worrying thing happen today. I was looking at something on my computer today, and for half a second, I thought I saw two block spots on my computer screen. I blinked and they went away. I really do not want to have a visit from the optic neuritis fairy right now. I'm tired of all the constant things happening...every few weeks. I don't get it. Why is everything happening so constant like that? I read about others with MS that have a flare or two a year, and then they're fine. Me...I get something new every time I turn around. Tired of that. |
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