Your comment has piqued my interest. Would you be so fabulously kind as to tell me more about the Ritalin? Does it rev you up? Does it work well throughout the day? I have a problem with ADD so I am wondering if it helps give you energy and keep attention on things too. Also I am curious about taking Ambien to sleep at night. I have never had a problem sleeping at night, sadly, and am curious why you need help getting to sleep. Is it due to muscle spasms? Or just insomnia? Please tell me more. Thank you, love Blindbeard.
I have to say, without a doubt in my mind, that this fatigue is the worst part of MS for me. I barely get rested up from Thanksgiving and Christmas is here. I can take a lot of the other problems that come in this lovely Multiple Sclerosis gag-gift box, but the fatigue irritates me more than all of them combined. I am as tired as someone 3 times my age and I get so sick of having to rest all the time. I miss the old days of being able to go all day and read half the night. Now I am in bed by 9 and lucky to get a half hour of reading in. We have one kid now (temporarily until her parents get in a better place) and sometimes I feel guilty for not having more energy for her. But then she buries me under a mountain of words and I realize that all she really wants is to flap her jaws and have somebody listen--that and play a few board games with her. I can take my messed up vision and itchy numb spots, but I really really wish I wasn't so tired. I take Amantadine, and that helps. I tried Provigil and HATED it. I felt like I should have snorted it or smoked it, it made me clench my jaw and want to chain smoke--not exactly the "awake" I am looking for. But the best thing yet has been taking the recommended rests, speaking of which, I have a hot date with my couch. Merry Holidays, my fellow afflicted inhabitants of this planet. Here's hoping that next year is (at least) not as bad as any past year has been, and really what more can you ask for?
Sorry for my prolonged silence. I have been snowed in with a kid and that fries my brain to the point that I cannot string together a coherent sentence. That and I have been feeling a little blue the last few days. No real reason for it, except maybe the holidays--I hate them. The stress, fuss and bother. Trying to make them good for everyone and always feeling like you came up short; you know, the usual. It does not surprise me that this time of the year has the highest suicide rates, not because I am going to off myself, but because of the cheer and how it makes you feel if you are not one of the cheerful. My little sister is locked in a bitter custody battle with her not-quite-ex-husband right now and she was feeling so hopeless she was thinking some crazy thoughts. I had to remind her that if she acted on any of them, who would poop on her ex-hubby's grave? (Under normal circumstances I would not condone pooping on anyone's grave, but he may very well deserve it.) If you are anything like me, and hopefully you are not, you don't want to miss what is coming next. Sure, I get down and think about ending it all, but I need to know what is going to happen next. My life used to be an X-rated soap opera (now with a kid it has been knocked down to R-rated) and sometimes I love the surprise of what is coming next. I am dying, no pun intended, to see how things are going to work out and wondering how it is going to play out. And that may be the only thing that keeps me here. Because, yes, MS sucks eggs, but I gotta know what is going to happen next. It is an endless source of wondering and speculation, especially when it is something you never would have guessed. Sometimes life is too fun to turn off the soap opera.
I have a very bad habit of assuming everything that goes wrong with me is due to my MS, so my terrible RLS (Restless Legs Syndrome) was accepted as normal. It wasn't until talking to my neurologist and her suggesting we test my iron levels that I even suspected my "cricket legs" (as I call them--I have to rub and rub my legs on the sheets in bed to get a few minutes respite until the Requip kicks in) was being made worse by something other than my MS. Who knew that a person with MS could have a veritable plethora of other things wrong besides their MS?! My levels of iron came back very low (I don't eat meat, which can't help) and now I am taking iron and feeling much better. My RLS is still here but not as bad and it has helped with my fatigue. But all that is nothing compared to the shock of realizing I can't blame MS for everything. Darn, I was ready to blame all sorts of stuff on it, too, like lung cancer (because I have MS, I can't possibly get lung cancer from smoking! Pass the unfiltered ones, please), my speeding (my legs are numb, duh!), my fat arse (I'm too tired), the list goes on and on...
One thing I always want to know about people with MS is how they view themselves now as opposed to before being diagnosed. My diagnosis came as a total shock and my disease has been so aggressive I felt like I didn't have a chance to really understand what it all meant before they started pumping me full of steroids, doing spinal taps, shoving me into skinny tubes that sound like a plane getting ready to take off, you know, the usual routine after being told you suck so bad your own body wants to destroy you. The first year and a half was HELL. I am now nearing my 3rd anniversary of being diagnosed and am still working on my self image. What I would like to know from you, gentle reader, is how you put yourself back together again? Because, like Humpty, I can't seem to get it back together again and all the king's men probably would not hurt, so send them on over. I am still having a very hard time letting anyone get close to me--not just physically, you naughty king's man! So for anyone who wants to share I would love to hear your story...
I may be the only person who loved those 7up commercials and I am OK with that. I swear I am going to make me a shirt that says that and wear it to the next MS function I go to, which won't be anytime soon. I can handle people with MS, I can handle a lot of different takes on it, but I cannot stomach the people who act like MS is a gift bestowed on them by the gods after wandering in the desert for 40 days and nights. Whenever I hear somebody blathering on about what a blessing it is I want to start popping some caps, or splitting some wigs, or even shizzling some nizzles--and I don't even know what any of that means, but if it means me with a cast iron skillet in hand about to go on a rampage then I agree with what I just said. You don't hear people with Ulcerative Colitis rhapsodizing about the lessons that it has taught them, or even people with such things as Muscular Dystrophy, Cerebral Palsy, or a club foot. So why do some MSers feel so gifted? I think it is a ruse to make the best out of a bad thing, eternal optimism, my-vision-is-only-half-bad kind of thing. Not me. I am not feeling the "gift" of MS. Not saying there is no silver lining to the cloud, I just want to be realistic about it. I don't see the gift in peeing my pants at a stop light (I should have just run it), or the constant pain in my face (I know, I know, but my face does hurt), or even having horrible RLSevery night. Call me crazy, you won't be the first, but I have a hard time in seeing the joy there. But to show that I am a good sport I will list a few positives: the street value of my medicine cabinet is mind boggling; I don't work; I can't see well enough to know if others are staring at me so it does not bother me; I never have to help anybody move or do any physical labor for them; I get to ride through the zoo, others have to push (we have a very hilly zoo); I enjoy the idea of wearing a shirt that says "Let MS Get UP YOURS!" and that says it all.
Tired of being treated like a contagious person? Being avoided and having people fake blindness when you are near? I have the secret to change all that. My patent-pending formula can change how people treat you, make you feel as if the red carpet was rolled out just for you, and best of all, it costs nothing--well, maybe a little of your pride. But I find life is easier if you ditch that pride early on. It is only excess baggage that will make more problems than it could ever fix. So make sure you are sitting down because here is my secret way to be treated like royalty:
When you are having a "bad day," you know, the kind where walking is more difficult and maybe your vision is hazy, haul yourself to your nearest national chain store. My personal favorite is Wal-Mart, it has never failed me yet. When I approach the store staggering and blind, people race to open the automatic doors for me. I don't need to fight to get a cart out, someone does it for me and hands it right over. Everyone is sure to make the gimp feel welcome, all the employees go out of their way to greet me and see if there is anything they can do for me. If I knock over a display I only need to start trying to lower myself to the floor and POOF! there are people swarming to do it for me. And checkout is even easier. I always use self because I like to use my pennies, but nobody wants to be rude to someone with such an obvious disability. Heck, most of the time someone is right there to scan all my items for me. Yes, I tell you, it sure does make one feel like a celebrity to have people so solicitous to help one out. So the next time you are feeling unimportant and gimpy, go try my method out and tell me if it doesn't make you feel like they rolled out the red carpet and genuflect just for you. (All this talking about it makes me want to go visit my subjects...)
The timeless beauty of those words moves me every time I hear them... and hear them I do--a lot. Sometimes I wish it were that simple, a sprained ankle, broken foot or leg instead of launching into the whole MS thing. And saints-preserve-us if they have a relative with MS also, I will never get away. I will need to hear the whole history of their MS, how it is affecting them and their (the talkers) take on the whole thing. Its not that I don't care about MS, and that I don't want to educate people, but sometimes I don't have the time (or inclination) to go into it all. I especially hate when the asker is someone who is cashing me out and they hang onto my bag until I have gone through it all. When I see somebody looking desperate for the bathroom I don't ask if it is number 1 or 2. I also don't ask other people with walking issues what happened to them. If I have learned nothing else from MS at least I have learned that we are all people trapped in bodies that don't want to work the way we want them to.
It is with much sorrow that I bid adieu to disABILITY Awareness Week, well not really, but I love melodrama. I hope everybody had a great week and got out there to make sure that people were aware of you and whatever abilities you may posses. I, myself, posses very few, but if they start handing out awards for Most Naps Taken I will be a front runner. I would also sweep the Most Ways To Eat Peanut Butter Award, Most Likely To Sleep Through Anything, and the coveted award for Least Stuff Done. Yes, I am a woman of many talents, try not to be too jealous. I need to mention a few Honorable Mentions I should receive, they include: Worst Night Vision, Most Likely To Not See That Car Or Pedestrian, Quickest To Repel Men, and of course Hottest Gimp--remember I said Honorable Mention, you would take that last one for sure.
Sometimes I forget just how far research has come when it comes to understanding MS. I don't know how many times I have heard, "they haven't found a cure for that yet?" As if there has been nothing new since Victoria's reign. Of course I don't go into how much we do know now and the many changes (for the better) that have come about. But sometimes I think it is good to take a look at what was the common knowledge about MS to fully realize how far we have come. Here are some of my favorite bygone beliefs:
"Women with MS should not have children."
"People with MS end up in wheelchairs." Not anymore; now we have a better chance than ever of not needing a wheelchair.
"There is no disease activity between attacks." Too bad this was not true...
"People with MS should avoid exercise." I want to say its too bad this is not true, but that is just my lazy side speaking. We now know otherwise.
"People with MS have the 'MS Personality' " This is one of my favorites/most irritating. Maybe because what they called the MS Personality was a little too close to my own personality, darn it!
"You don't need a DMD until your disease starts getting worse."
"A symptom of MS is the lassiez-faire attitude." You gotta love Charcot, the "Father Of Multiple Sclerosis." He gave us the first comprehensive outline of MS, thus earning the dubious honor of the earlier mentioned title, yet he saw mostly people who had been suffering from MS for many, many years who lived up to the attitude he identified.
There are a few other things I enjoy, like the warm bath test used to diagnose people before the joy of a spinal tap, I just wanted to throw out a few to remind us of just how far we have come.
You can say what you want about Newsweek, People, Time, National Enquirer etcetera but I live for my Multiple Sclerosis magazines. Sure, those earlier mentioned periodicals may have a broader appeal, but nothing makes me squeal with anticipated joy quite like an MS magazine. I was just thinking to myself that it had been awhile since my last one when my husband came in with the mail and there was my MSQR looking more enthralling than I had dared to imagine. I don't know if you get it, but on the cover was a picture of 3 different kinds of pills and the words, "Treatment Of Multiple Sclerosis Relapses." I was overjoyed--I thought they finally had an option for relapses besides those hideous IV steroids, which I hate more than anything else that involves MS. You know that saying, "from the top of the world to the depths of hell," well I felt it when I turned to the article the cover was referencing and saw the only picture--hands holding an IV bag of steroids. What a horrible joke to play on someone; talk about false advertising. And I am sorry to admit that this fool fell right into the trap.
Marriage is a b*tch. Every married person knows that, we just don't want the single people out there to find out because misery loves company. My marriage is not better or worse (that's like a pun or something) than anyone else's. The divorce rate in the U.S. is about 50% (it is slightly higher in the U.K.) but when one partner is diagnosed with a chronic disease it jumps to around 75%. I am going to take a stab in the dark and say that you are not surprised by that nugget of statistics there. I am so tired of hearing, "for better or for worse, in sickness and in health" from those who are not suffering from a chronic disabling disease, that is just as hard on the pocketbook. I know what my marriage vows are, I was there and I even have it on tape somewhere if I need to refresh my memory, but I do not like to be told what they are by people who have no idea what it is like to be in this position--mom and my mother-in-law, I'm looking at you! Marriage is hard anyway, but when the dynamics of your relationship change dramatically it can become much harder quickly. My husband and I were outdoors types who camped, hiked, and spent long days in a boat fishing. Now I don't camp because a tent and me do not mix, I would need help getting up and down, I don't hike because I will trip over the smallest uneven spot so all paths have to be accessible, and I can't spend long days in a boat fishing because I can't take the sun on me all day and can't sit in one position like that because I get bad leg cramps. My mother and mother-in-law were both raised in the belief that marriage is forever--no matter what. My mother-in-law has been married for over 45 years to a drunk that has spent their money, destroyed their house and things in drunken rages, roughed her and her boys up, and had multiple accidents while drunk, yet divorce is a sin. My mother will hang on to marriage because divorce is wrong, no matter how unhappy that marriage is. So how do you explain to people like this things such as:
When one partner can no longer hold up their end of the 50/50 responsibilities? When the other one has to pick up all the slack?
When the incomes become income and you cost more than that income to have around and the guilty feelings it gives you?
When you no longer have the energy for the life you built together?
Wondering if it embarrasses your spouse to be seen with you (I know that sounds harsh, but I worry about that sometimes).
The stress on the other person of having a spouse with a progressing disability. What is it doing to them to watch you suffer?
The planning for a totally different future from what you had hoped for.
Wondering if you should let them go so they can find someone to share life with, not just a spectator (again, may sound harsh but I worry about this one)?
So I do understand my marriage vows, but there was no way to see this curve ball coming and I am not always sure of what the right answer is. I can totally understand why the divorce rate jumps so high. Chronic progressive disabling diseases take their toll not only on ourselves but everything we are involved with. Walk a mile in my shoes, then tell me what I should do, not trying to sound bitter because I'm not--I'm just as confused as anyone else.
Lets hear it for the disabled! If for only one week a year, lets revel in the spotlight. I think it is a good message to focus on what you can do when so much can become difficult--too bad it took me well over a year to remember that I am not 100% Multiple Sclerosis. I had read books and articles about remembering who you are and not to let your disability define you, but those can be hollow words when what you don't want to define you is tearing you down rapidly. It has taken me a long time to find myself and I hope to never lose myself again. So lets celebrate our abilities (however small they may be--I don't have many talents) and if only for a week remember what we can do. And since I am gifted in the art of putting my foot in my mouth, I am off to exercise that talent for the week. Team Disabled all the way!
This is the last I am going to write about this subject, I promise, unless I come across anything so radical it changes everything. I have spent all day researching everything I could about T., it has been me, internet, library and a shaving cut that has been killing me all day. While I appreciate all comments and appreciate the motivation to do my homework, I have found nothing that goes against doing T. every 3 weeks. As many of the comments said the "recommended" dosing is every 4 weeks, but as another comment said depending on how the body uses it, every 3 weeks is not a risk of PML. Of the 3 people who did get PML (2 with MS, 1 with Chrons) all of them were using T. in conjunction with another immunosuppressent, not just T. alone. There is no data of any kind of overdose, they are not sure what exactly that would entail, probably because of its short time on market and how strictly they are watching it. Which brings me to my next point, the infusion center keeps tabs on everyone who receives T. and keeps records of every time you have an infusion and submits those records to the TOUCH program. Therefore I want to say again that I am sure I am not the only one who does it on a 3 week schedule. There is an estimate of over 10,000 people on T. now in the U.S. alone and I can't remember what the U.S. and Europe number was, I believe over 12,000, so I doubt I am alone, and so far no new cases of PML, but many cases of improved quality of life, YEE HAW! But don't take my word for it, ask, read, just don't cut yourself shaving.
Maybe I should have started this whole subject with a disclaimer, so here it is: I am not a medical person and I do not claim to know more about MS than anyone else. I am merely your average lay-person who needs to know everything I can about the disease that dictates my life, therefore I appreciate all your comments and feedback because they help me research areas that I may not have looked into as much as I should have. I am not saying the way I get Tysabri done is the right way, I am just putting this information out there in case it could help someone. I can understand why some people would not like someone doing Tysabri other than what is recommended--I do not want to be the person who gets PML and takes Tysabri away for good. I too am afraid that someone will get PML and we will lose this manna from the gods that is Tysabri. My neurologist and the infusion center I go to are cutting edge--so much so that people come from several states to see them. They only deal with MS, nothing else, and are one of the best Multiple Sclerosis clinics in the country, hence why so many people want to go there and why it can take months to get in. I said in a comment but will say again here, they do studies and clinical trials so maybe that is why they allow me to dose the way I do, but I am confident that they would not do anything to jeopardize themselves or anyone else. So to get to the bottom of this I am going to talk to them this next week and do some research myself because if I am in the wrong I will gladly eat humble pie and go back to my old schedule of every 4 weeks--if for no other reason than I want everyone to be able to benefit from Tysabri. Whew! I feel better, hope it was as good for you as it was for me.
I know I am not alone in having people say some really dumb things to me; it makes me think of Southpark when the teacher says there are no stupid questions just stupid people. I don't mind when people ask me what is wrong with me, or what happened. I can handle an honest question meant without offense, but some of the comments and questions that I have heard are so downright dumb it pushes my patience, which is not always in big supply anyway. Here are some of my favorite gems, and I would love to hear any that you have heard. Without further ado, let me say that you really are fun in the sack, because we all know MSers are better lovers, and here is my short list:
1. The people who tell me why I got MS. I have heard it is because of diet sodas, which I never drink, from microwaving food (wouldn't everyone have it then?), and I must have had a back injury that caused it (again, no back injury here).
2. "Can't they do surgery for it?" No. Even if they wanted to try I am not sure I would want anyone messing around with my brain and spine. Although that is not what I said. I told that person that I would need a brain and spine donor and maybe they should offer theirs because they obviously are not using it.
3. "Is that contagious?" This one came out of the blue on me and I was not in the mood to go into all the details of the how and whys, so I just told them they needed a brain to get it. When I hear this, and I have a few times since the first time, I know they are only worried about me coughing on them and them getting it, because nobody wants to walk like me.
4. "God is punishing you for something you did." This one made me so angry it took me awhile to sputter out that I had read the New Testament and I suggested they do too. I also said that I did not think sacrificing the oldest male goat in my herd would cure me.
5. "You're going to be a vegetable!" This one I heard from my mother-in-law. I don't know how many times I have told her otherwise but she is stuck on the idea that her son is going to be married to someone in a vegetative state. And that someone needs to run, not walk, to the nearest lawyer to get a living will so her precious son will be able to pull the plug, ASAP, when that inevitable day comes.
I have also heard a ton about what I need to do to "cure" myself, but that is a post in itself. For the most part I will do what is suggested as long as it is not radical and does not interfere with my approved treatments. I would love to hear what you have been told/asked because it has taken me quite awhile to get to the point of being amused by the stuff people say to me--but it amuses me very much now.
When I was diagnosed with Multiple Sclerosis I knew nothing about it. Literally nothing--I thought I was one of "Jerry's Kids," embarrassing to admit but it shows how out-of-the-blue my diagnosis was for me. Frustrated by a lack of forthcoming answers to my many questions and being a voracious reader I had to do a lot of research for myself. I wanted the answers no matter how ugly they were and I felt that the guides for the newly diagnosed got me nowhere. My MS, right out of the gate, was so aggressive that I was beyond the attacks once-in-awhile and had about 5-6 within the first year. I wanted to know everything that I could about it and what it meant for me. This is a short list of the things nobody would tell me but I found out on my own. I will expand on each one in it's own post, I just wanted to list the things that I wanted to know and nobody wanted to tell me, yet I felt I should know. I know I am in the minority with the way my disease is progressing (thank God), but there are others out there who are having similar experiences and are probably as frustrated as me by a lack of forthright answers. So without further ado here is my short list of things nobody wants to tell you:
1. MSers are 7 times more likely to commit suicide than the average person. If you have not had a run-in with the black dog of depression you need to be very thankful--it is hell, and that is not even a strong enough word for it.
2. What's my prognosis? Nobody wants to tell you what your attacks and symptoms can tell you about your future. There is some information out there about the nature of your attacks and what they can mean for your future. I will go into this in a separate post because it is a lot of information; it can be scary but I would rather know what I am facing.
3. The down side to the DMDs. They do have some downsides, but you will never hear of any of them from a rep. from the company. Like with a higher dose of an interferon the higher risk of neutralizing antibodies and higher risk of depression. Also, Betaseron has the highest incident of neutralizing antibodies and Rebif puts you at a higher risk of depression. I'm not saying there is not a lot of good with these meds, I just want people to know all the facts to make the right choice for them. I also think it is good to know what the overall reduction rate is for each of these, because they all vary. Again, this is a post in itself, which I will do, I am just giving an overview right now, it being early still and having to get a little girl ready for school soon.
4. Mental/emotional problems associated with MS. They will tell you that it does not cause any changes in behavior or if they do tell you they will say it is rare. But studies show that atrophy (shrinkage) of the brain occurs in the early stages, and any disease that leaves scars on the brain is liable to have an effect on you and your thinking/behavior, especially in the frontal lobe. When I attempted suicide, even though I had been told that MS will not cause those kind of changes, they still did an MRI on the frontal lobe of my brain to see if I had a new lesion there that was effecting my moods.
5. Lifespan. Nobody wants to tell you about your lifespan. They will tell you that it is almost close to normal, which is true for the most part, it is slightly lower than normal. I'm sure you have heard that MS will not kill you, that it is very rare for someone to die from MS; this is true. But all the meds pumped into your body will tear it down and most MSers, when not taking matters into their own hands, die from complications due to the different meds put into us. Especially as the body gets older, when you damp down the immune system it makes you that much more susceptible to getting pneumonia or other life-threatening illnesses, hence you do not die from MS but from something else.
That is all I can think of right now, but will add more if I think of them. I am off to get my Tysabri done. Remember, Blindbeard loves you (big cheesy grin would go right here).
I did not know that it is unusual to do Tysabri every 3 weeks. I never even knew it was an option until I was talking to one of the nurses at the infusion center, she suggested I try it to see if it helped me. I can't imagine they would do it if they could get in trouble... at least I hope not. So now I am curious if anyone else is having infusions every 3 weeks? I know some have to be out there because the nurse told me that it was more common for women and they had some people who were already on that schedule. Now I am wondering where they are...?
There is nothing I love more than being asked to talk more about a subject that I try not to talk about too much with people that I think may not care. I have read everything about MS and treatments and different issues that can come with the disease that I could get my hands on and I don't always get to share any of that knowledge too often. So it is with much pleasure that I am going to give more detail about my Tysabri experience. (I just want to thank all the little people... sorry, had an Emmy moment there.)
I started Tysabri In February of 2007 and started out getting it every 4 weeks. I went through the whole TOUCH program, which is a blog in itself, in fact I went through it twice because I was hoping to get it (Tysabri) done closer to home but my neuro moved to FL so I just stuck with the infusion center that is 2 hours away (and in my hometown, so I don't mind going there). They have it set up where you can get T. done a week early or a week late if your schedule won't work out for you to get it when originally scheduled. I noticed that towards the end of the 3rd week I would start getting symptoms kicking up, sometimes really bad. I would start having the pain and hot/cold sensations in my legs, my vision would get dimmer, I would get so tired I could barely move--all the things that made me a prime candidate for T. I told the infusion center and they told me that women seemed to burn through the T. faster and that is why you have the option to do it a week earlier. I'm not going to lie, they do try to push me back to 4 weeks sometimes but I stand firm and keep telling them that by 3 weeks I need to get it done again--I am scared that I will get some symptoms that won't go away if I wait too long. I told my neuro that I get it done every 3 weeks and she was ok with it. She just said some people need to do it that way. Getting infused every 3 weeks does not increase the risk of PML, the only thing that did increase it was using T. with other DMDs. The only down side that I have had is that I get sick a lot easier right after an infusion, but that only seems to be within the first few days, then I am back to my normal never-get-sick self. The IV site is never a big bruise like it can be with the other shots. The only time I get a bruise is from them blowing a vein. I hope this covers the basics, if not let me know.
Have I mentioned how much I love Tysabri? I have? Well, pretend that you have not heard this before then or go pluck your nose hairs for a few minutes while I rhapsodize about Tysabri. I have been on 3 different meds for my MS before Tysabri (Tie-sob-ree), Avonex, Copaxone, and Novantrone. Avonex was about as effective as water for me. My Ms is too aggressive and it did nothing but make me sick, tired and more depressed--not a good thing. Plus the IM(intra-muscular) shots HURT! After 6 months and 3 attacks my neuro switched me to Copaxone, which I loved almost as much at Tysabri. I did my own shots with my own little Auto Injector and sub-q (sub-cutaneous, just under the skin) does not hurt, in fact a lot of times I didn't feel a thing. The only down side to Copaxone is the itchy injection sites and it has the least reduction in relapses; but no depression or sickness. Novantrone was a hideous experience; it is a chemotherapy. I think that says it all. I was stuck in the house for 2 weeks after because I could not risk getting sick and I lost no hair--what a rip-off! But Tysabri is the BEST! I have not felt this good since before I was diagnosed. There is no depression, it is once a month (you can go a week early or a week later depending on how long it lasts. I go every 3 weeks because I burn through it faster and start getting attack-y after 3 weeks.) it has helped with my fatigue and walking--in short I feel alive again! It is done IV, but that is not a big deal. I have not had an attack since starting it this last February--and that is a record for me; before this my longest time attack-free was 5 months. It doesn't cause depression, or make me sick, in fact I can't think of a down side to it. Wait, I thought of one. They say it is about $27,000 a year, but that is the med alone. Once you add in having to go into an infusion center and all the charges that entails it comes to more like $50,000. A hefty price tag but worth it--it makes life worth living for me again.
The most annoying symptom of my MS has got to be this optic neuritis. Other things may come and go but I can always count on it to keep me company. The only break I ever get from it is from taking some OTC pain meds (and sometimes prescription ones, but not very often; I don't want to be on Intervention.). For a while there I thought I was having trigeminal (sp?) neuralgia, the horrible, stabbing, shock-like pain in the face, because it hurt so bad. But my neurologist said it was just this stupid ON. I would be more accepting of the pain if it did not mess with my vision, but alas, that is not the case. I have spots that are dark (I don't know how else to explain it), my vision on that side is not as crisp, and I get double vision when looking over my shoulder on that side. The dark spots are kind of like just before getting a migraine, or when you look at something bright and it leaves spots on your vision that you can see around but not through clearly. When I am trying to see something well, I have to move my head around to get the object in view between the dark spots. If you have ever seen Hairspray with Rikki Lake in it, it makes me think of the part where she goes to the beatnik's house and Ric Ocasik (sp? from The Cars) is moving his head in circles and painting a picture. That's how I feel when I am trying to see something, I just rotate my head until I get it in my sights. The only time my eye does not hurt is when I first wake up--I should say my best chance of not having it hurt because even that is only about 50/50. And the headaches from it... but I think I am done crabbing for today. I can only take so much negativity and then it gets old, which reminds me of what a friend asked me not that long ago. He asked me why I am always in a good mood. The answer is, why aren't you?
I love the Used Bread Store (or Day Old Bread Store, or maybe Discount Bread? I'm not sure what its real name is, and "used bread" rolls off the tongue better.). I love the smell when you first walk in; if I could get candles that smelled like that I would bask in that smell all day happily. I don't really have a sweet tooth and almost never eat anything chocolate, not being much of a fan, but I love to go there anytime I need a loaf of bread and nothing else. I buy sweets for others in my house, but not for me, I just love that smell of collected goodies. I love the great buys, I love the selection, I love that if you buy $3 worth of stuff they give you a big bag of too old bread to take to the duck pond here and feed to the ducks, I love that they know me and when they see me they will always give me several bags, and sometimes even hold more back for me, which I know because once I saw one of the ladies out and about and she told me she had a bunch of bread set aside for me because she knew it was getting about time for me to come in again. I love the sight of all those chocolate, powdered, and glazed donuts. I love the smell of all the Zingers, pies, cinnamon breads, cupcakes, coffee cakes, sweet rolls and Twinkies. The only thing I buy for myself is a loaf of french bread and maybe a loaf of cinnamon and raisin bread to make french toast with, once in awhile some English muffins if I am feeling really crazy. I let Princess pick some stuff out and grab some stuff for my husband, I'm glad somebody likes sweets because I would hate to not have a reason to go there.
I had to wait for Princess to go to bed to write about this--sometimes she does not understand that when she makes me laugh I am not laughing at her. She gets shy and embarrassed when I get too much amusement from her. Like for Halloween she was a vampire and when she put her teeth in, it looked so funny and cute it kept making me laugh. She thought I was laughing because she looked silly and got all shy about the fangs.
Tonight she finished a book that she has been working on the past few days and wanted me to read it. She has been plugging away on my desktop pc trying to get down the first draft with all the details that she did not want to forget. I took it outside with me when I let the dog out because I was afraid I would be bored or too amused and either way I did not want to hurt her feelings. She started it out by talking about a school that had been built "ages ago," and those ages amounted to 5 years, which makes me positively prehistoric. She centered the action around a secret passageway that was made out of "pure-real-gold" because I can only assume pure-fake-gold would be too cheap sounding. But the best part, the part that made me glad I was out of hearing range, was when she described the fantastic places the secret passageway took these 3 fifth graders in their ancient 5-year-old school. She puzzled for a long time over what would be "awesome" enough for their adventures and came up with The Great Wall Of China, a dinosaur adventure, a length of time on Jupiter (complete with 64 moons! I had forgotten that little fact), a trip into her favorite book, Charlotte's Web, where they each became a character, and finally, a natural history museum in Detroit, MI. That last one threw me for a loop, I didn't see it coming from a mile away and never would have lumped that in with Jupiter, dinosaurs and The Great Wall. Good thing is only the neighbors and dog heard me laughing.
I just don't have much going on today, at least not much to talk about. I went to lunch with my little sister and mom and it was good, not great but good. We went to Ruby Tuesdays, where my little sister works, and it reminded me of all the other restaurants of that caliber, ieApplebee's, Chili's etc. I like wheat bread but their wheat bread made me feel like I was eating out of the bird feeder--it was that coarse and seedy. I don't eat hamburgers so I find a 1/2 lbs burger a little... repulsive, yet I know many people like that kind of stuff and that doesn't bother me. I don't eat meat because I don't like the texture of flesh, not for any animal rights reason, which is good because my husband is an avid hunter and fisher--but he says that fish and shrimp are not meat. I disagree; if it comes from an animal, its flesh and I don't eat it. The high point of my day was listening to my sister and mother disagree on everything; they rarely see eye-to-eye so I made them sit on the same side of the table together so I could enjoy all the fun out of their reach. They are so busy talking, coughing, and spitting all over each other and the others' food that I really didn't need to say a thing, just sit back and enjoy the show. Now I have covered my whole day and am feeling the weight of this writer's block....
Update: Seems it is only me that is not impressed with Ruby Tuesday's. My husband and Princess slobbered and fought over my leftovers, which is strange for P., she never eats leftovers. As for me if I get a hankering for R.T.'s again I will go eat out of the bird feeder. Move over, feathered arses, a bigger arse is coming in!
I am signed up on too many different sites under even more names, amongst those my favorite is Deathbreath--a bright idea after an all-consuming addiction to Rampage. We all fight over who gets the Deathbreath because it is so darn helpful, and its fun to tell people. If I get a phone call while playing, "Can't talk now, I've got DEATHBREATH!" Both my sisters know what this means, only my parents may not understand, and anyone who has never heard of Rampage before, which means you have lived your life under a grub infested rock pile. (I got sidetracked talking about Rampage.... gives me a real yearning to go play some RAAAAMPAGE.... must resist the pull of Deathbreath...) But all this was not my point, my point is that I have been looking for some people and can't seem to find them. I can't remember anybody's age anymore it seems, so haj, if you read this I have been meaning to write back to you but can't find you anywhere and lost your email somehow. There may be some others but I was trying to find all my foster kids to add to my friends list (the ones old enough that is, all 4 of them), and only need haj still. As for other people, just because I didn't mention you does not mean I don't want to be your friend or hear from you, I just don't want any of my old foster kids to feel left out when they see I have everyone else on my friends list, and a sex shop--can't forget that.
I hate these last few minutes before I have to leave to pick up Princess from school. I can feel that last few quiet grains in the hour glass drain away--had to throw in a "Days Of Our Lives" reference there, this sounds so melodramatic. Why is it that the weekends or days when there is no school, time seems to cccccrrrrrraaaaaawwwwwwlllllllll yet the days I have 8 hours to myself are gone before I can get a book read or a really good nap in. Sometimes I just want to sit here and not go across town and have my ears chewed down to bloody stubs or hear somebody ask, "Whats for dinner? Why isn't there any good food? What do you do all day? Why didn't you do _______ for me so I wouldn't have to?" Then comes the hideous shows, and those are a fate worse than death. Can't get the prisoners to talk? Tune in to "Suite Life Of Zack And Cody" or "Life With Derek," they will sing real fast. Heck, I don't have any good secrets but I would gladly tell any I do have to stop the torture of kids' after-school programming. Darn, why does the time have to go so fast when you dread lame TV? Now back to your mommy duties.....
HA! I knew I should have bet my little sister but she would not put up any money. She said that I would not use my membership to the Y for anything other than swimming with Princess, and she was dead wrong! I dropped P off at school and went straight to the Y and worked out for almost an hour. It was great; no kids hanging off me, listening to music and feeling the burn. I tried on this dress I was thinking of wearing for Halloween (I was going to be a fortune teller but ended up not dressing up) and it was so tight and hideous my husband said my butt looked like pigs in a blanket--this coming from a man who has now reached his top weight ever and looks like a muffin rising out of its muffin paper. I have had enough of being out of shape, I miss my old jeans and being long and lean. I am not trying to get back to my old weight, because I feel so much better now than I did then, but I want to get in shape. Plus I don't want my muscles to lose what they have, I don't want to be so stiff and I love the feeling from working out. I always feel better when I have some kind of exercise in my life--love those endorphins. I am going to make this weight gain a footnote in the (boring) history of my life. Anyone want to bet me??
I don't know about anyone else, but if I don't have a book to read it makes me crazy. I finished my last book last night and that ended my pile that I wanted to get through. Without a book to read I just can't settle down into anything. I get restless, pace, can't find anything that will hold my interest, its not a pretty sight. Sadly, the library does not open until 1pm on Sundays so I am going to have to find things to do until then. I have a laundry pile that has snow forming on top and leaves all over the place that I want to suck up, I just hope those chores can hold me until 1. Me without a book is akin to a man dragging himself through the desert looking for water, I don't crawl on my stomach but I feel just as lost. I guess I will have to go kick the people that are trying to plant a flag on the top of my laundry pile off so I can finish it and then attack the leaves. It has been so windy that my leaf piles keep shifting. I had a good pile there for awhile then the wind blew it away and made it someone else's problem. The wind kicked up again and brought me somebody else's pile, so I guess I deserved it for getting joy out of seeing my leaves blow away. Okay, now I am just killing time until I can go to the library.
Princess and I went to the Y today to swim and there we were witness to a horrible tragedy, a crime against nature and an assault on our eyeballs. An old, old, old man and a younger woman were already in the pool. I first noticed her in the locker room; she was wearing a pair of sweat pants with one leg pushed up to her knee and the other almost to the floor. She stalked through the locker room and, I am not trying to be mean but, I noticed her open, slack jaw and thought she was looking for the person she came with because it was obvious that she did not drive--she was mentally handicapped, to use the PC term. That did not bother me until I saw her in the pool with the old man. I have no problem with 2 consenting adults doing what they want as long as they are not hurting anyone, and I could even accept that she was about 1/2 his age and he didn't have any teeth. But I cannot accept the fact that he was wearing the tiniest pair of nylon panties as a swimming suit. A pair so thin and tiny that gray hair was crowding out the sides and every detail of his beans and weenies was on display. And I mean beans and weenies, the kind that would come in a very small can. When he got out of the pool and Princess finally noticed what he was using as a swimsuit she looked at me in surprise and whispered, "That's gross!" I couldn't agree more.
Due to an underwhelming amount of feedback I am going to assume that everyone is just loving this new blog thing of mine. Yes, I have been able to infer, from no comments, that everything is perfect and as before have unflinchingly looked life in the eye and called it as I see it much to every one's total agreement. Who needs any feedback or comments to show that one's readers have a pulse? Not me, no sir! Silence is manna for me, my meat and potatoes. So I will continue to take total silence as total admiration and adoration and continue to deceive myself, knowing full well that if my little sister had internet she would make sure I never had any doubts.
Update:I have finally got some feedback from the hottest member of my family, and I am not talking about myself. If this continues I may have to start my polls... am dying to anyway.
Most days it is right here, on this couch nestled in my special nappy quilt. But I can't find it anywhere and that is odd. The only thing I found in this quilt was a naughty quilt that wanted to squeeze the dog's nose and that is always a sure sign that there is no nap for me. The dog loves it, or maybe hates it, I don't know. He hates having his nose squeezed but loves to wrestle and play rough. My gardening gloves have a thing for squeezing his nose too, so he will run off with any glove that he can get and destroy it before it can get to his nose. My dog is smarter than he wants anyone to know, but he has never figured out that it is not the glove that is guilty, and I am not going to tell him any different. Come to think of it, he hates if I put on gloves to go outside when its cold too. Whenever I bring in wood he chases my gloves and barks circles around me so the whole neighborhood knows that I am outside. I really wanted a nap but this bad quilt can't seem to leave the dog alone and he tore a few new holes in it to show it how he feels about the squeeze. Oh well, if anyone finds my nap please send it straight home to me or I may have to go do something productive. EEEEK!!
You can say what you want about good cheer, kind feelings, gift giving, family gatherings, etcetera, but I know what is the best thing about this time of the year: holiday coffee creamers. Forget school programs or the first snowfall, when I see those holiday creamers back in the store it fills me with tiding of joy. Peppermint Mocha is probably my favorite, but I don't want to cause any hard feelings because I love them all. Gingerbread smells so good it makes me want to bake cookies. Whoever said you cannot buy happiness has never tried Eggnog, it is pure happiness in a plastic container. Pumpkin Spice had me feeling so jolly the other morning I bought a rolling pin to make my pies this year, thus giving the mason jars a break. Let the leaves fall, snows come, crabby shoppers fill the stores, they mean nothing compared to my creamers. I only wish they were available throughout the year, but I guess the season would lose its magic for me then. I can handle the hideous gifts from my husband's granny as long as I have my holiday creamers to console me and get me ready to return the pile of crap I am sure to get.
I ate too much candy. But I know I am not alone in this ship of fools, my husband and Princess are feeling the pain too. Why do they have to give out Nerds? I love those things. And Pixie Stix will get me every time. I don't do chocolate but loves me some fruity stuff--just not cherry. Yuck! I think it is because growing up it seems like my parents always bought those cherry Sucrets (sp?) and the flavor of fake cherry makes me want to puke. I don't have much of a gag reflex but that crap will do me in every time. Like when you go to the dentist--which I don't even want to think about right now, I'm pretty sure I fell asleep last night with a Pixie Stix in mouth--and they use that gritty junk on your teeth. Now, thank God, they have other flavors, but as a kid it was always cherry, and if one little grit touched a taste bud I would gag. So I pretty much drooled buckets at the dentist. Princess told me to help myself to her candy but like most parents I was nibbling all night. Our neighbor answered the door eating candy and several others were too. Now I don't even want to look at anything sweet and have a nice not-sweet lasagna in the oven. I don't want to even see candy until, well, at least tomorrow--Princess did get a lot of Nerds and I would hate for her to get sick off them.
All I wanted today was a nap. A nap to get me ready for taking Princess trick-or-treating, but my husband took one look at me all comfy and dozy on the couch and decided that he had a lot to say. And he needed to pace the floor as he said it, and take and make many phone calls too. To shut him up I made a deal with him. He wanted to know where I had hid the Halloween candy, but I would not tell him unless he promised to quit talking and let me nap. I had hid my stash in the cupboard with the healthy snacks and foods, I knew it would never be found in there. No one else in this house would be caught dead looking in there; there is not enough fat and calories in there for them. When I told him where to find it he said he could not believe he had not found it before (!), and that a blind man could have found it. He ate so much candy he said he felt ill and pissed me off by eating more. The only way I got him to leave some was by telling him he would have to go to the store for more if we ran low. Next to my healthy food cupboard the grocery store is next in line of things to be avoided at all costs. I hope the kids will understand when they get empty candy wrappers from us this year. I hope they realize the real criminal here is him and not me, and egg and t.p. his car accordingly, not mine. He said he would just turn off the lights and sit here in the dark if the candy ran out--not hard to do when you eat yourself sick on it. I thought it was the kids that you had to warn about eating too much candy and getting sick. Hmmm, makes me think of "Plop plop fizz fizz"...
That STINKS! I am going to find out which cat pissed on the rug in my bathroom and didn't have the basic manners to give me a heads-up about it. I walked in there to take a bath and the smell was so overpowering I almost lost consciousness while simultaneously having my hair and skinned bleached by the ammonia. I hauled all the rugs down to the laundry, sprayed air freshener and even wiped the floor with Lysol wipes. My husband lit every candle and several incense, which I hate--they give me a headache--all to no avail. What is it about the smell of cat urine that just hangs on and on and on and on? I feel like I am living in the middle of a soggy cat box and I suspect that it is my oldest cat, Flea. That fat old bitch is so lazy he probably doesn't want to go down the stairs to relieve himself. He has been torturing and abusing me for 14 years now and I have not complained, but I have to draw the line at pissing around the house, in places that we can't seem to pinpoint exactly where they are. I'm not going to say I want him gone... but if one of my babies does decide to go into the light....
Digging through the fridge looking for what to make for dinner I decided spaghetti sounded good to me. As I am the cook and maid and we decided that everybody could dig up their own dinner, I yelled out to my husband and Princess to see if they wanted any. They were so thankful for my thoughtfulness they started fighting over what I could make for them. P: I want macaroni and cheese! H: I want tacos! P: Macaroni and cheese! H: Tacos! I waited for one of them to take a breath then just yelled over them that because I was making the meal, I was making spaghetti and they could eat that or make their own meal. They decided spaghetti was exactly what they were craving and thanked me for reading their minds.
Earlier I went to some home improvement stores to look at some borders for my bathroom. As I was getting ready to leave my husband told me not to get any of that "fake looking s**t". I don't care for whimsical anyway but it is my bathroom and I had something in mind for me. I would not mind others using it but they never replace toilet paper, bunch wet towels up, and if a towel falls they don't pick it up.
My husband and Princess were looking for dessert and were scandalized that I only got a small box of ice cream. They asked why I didn't go to a store on the other side of town from where I was today to get the big bucket of the kind they like.
My husband thinks his delicate skin is irritated by the laundry soap I use. Never mind that I have used it for years and he never had a problem, or that his skin is about as delicate as an armadillo's shell, I had to get him some without any fragrance or dyes and separate all his laundry out to wash, doubling my laundry.
Sometimes I wouldn't mind getting fired from this job.
Because I am, and no, you pervert, I am not talking about anything naughty here (well, maybe, but it is a funny memory from high school; I'm sure Tilly will remember.). I must not move much at night because I wake up with as much flexibility as a steel beam. This morning Princess and I woke up late--7 am. She came in and shook me and said, "We slept late!" all panicked because I usually get up about 2 hours earlier than that, but I just could not get to sleep last night. I was hot but without the covers it was too cold, my husband was over the line and crowding me, panting all over my pillows and heating up my side, my book was so good I didn't want to put it down, I had one nostril stuffed up and could get a good nose whistle going if I breathed just right so I amused myself with piping out tunes. Ugh, you get the point. Then when I did fall asleep I had stupid and disturbing dreams, and I obviously did not move enough (even though I had to pee about 10,000 times last night) because this morning one arm was asleep and I was walking like Frankenstein in desperate need of coffee. One of these mornings I am going to seriously hurt myself because what does not bend breaks, but until then I can always amuse myself by loudly asking my husband, "ARE YOU STIFF?!" because that is a funny memory.
All day my husband and I have been arguing a certain point. I made ham and bean soup today and he and I can not agree on what it is or should be.
He: It is ham and beansoup. She: It is ham and bean soup. He: You crumble up the cornbread and put it over it and eat it as one dish. She: The cornbread goes on a separate plate and is eaten with it, as two dishes. He: Less juice! She: Its soup! Its supposed to be that way! He: No, it is ham and beans.
It just keeps going around and around. I would ask what others think, but I have no hopes of any one actually voting... but if you want to, what do you think? Is it ham and bean soup or ham and bean soup, or are we both stupid?
I need to get more exercise. My neurologist told me that exercise is important for everyone but doubly important for people like me. I live in the pool all summer long, but winter... I have no good excuse for not exercising. I wish things like I'm tired, I'm lazy, quit shouting I'm napping, would hold water, but alas, they don't. I was trying to decide between getting a membership to the Y again or cultivating a crack addiction. I was leaning towards the crack idea for about 3 minutes, so I told my husband that I was thinking of starting a new career, one that would require different hours and possibly more diseases. I knew it would be a rough start, being in a smaller city and being a gimp--not exactly a promising beginning to my prostitute career. I had it all figured out, I would sell my body for the crack money because I don't want to sell off anything we own and I want the money that fuels my addiction to come from the sweat of my own... brow (what did you think I was going to say?). I was even practicing my "Paris Hilton" smirk for mugshots. Yes, I had it all figured out. When I told my husband my plans he asked me if that was my only choice. I am now a member of the YMCA again.
Anyone who knows me knows the story of my young ward, but for those who do not know me I wanted to explain as much as I can. I have no biological children, we did foster care for about 3 years before I was diagnosed and had 9 kids that way. My young ward, as I like to refer to her because she is not my bio kid, has been with us off and on for about 1.5 years. Her parents are going through a nasty divorce with a lot of turmoil, so she is with us for the time being and will be for a while longer. I refer to her as my young ward or Princess or a bunch of other nicknames because I guard these kids' identities vigorously. If you know me and know her that is fine, but I am not willing to give up any details about her and will not post pictures of her on the internet or anywhere besides my house and maybe in Christmas cards--if I did Christmas cards. So it may sound strange to call her my young ward, but that is what I am comfortable with. I am ok with putting myself out here but not any kids--doing foster care will open your eyes to a lot of things you would rather not know sometimes, so I protect these kids like a rabid mama bear. You can mess with me but not my kids; I don't want to spend my life in prison but I will gladly if someone hurts them.
I have these itchy bands around my arms, right above the elbow that are driving me crazy (short drive). I hate how MS symptoms can be asymmetrical. Like my left itchy arm band is only a few fingers wide where the right one is wider than my hand, almost from the elbow to the shoulder. My left earlobe is so itchy I had to take my earrings out, and I keep clipping my nails down so I don't tear up my skin in the night. I get electric shocks over just my right shoulder blade up my neck and into my hair, which makes it stand on end. My legs both have pain and numbness but the left one is only about mid-calf down and the right one is about knee down. But I have to say that the most annoying thing I have had so far is this RLS (Restless Leg Syndrome). It drives me crazy! I will be so tired but my legs will just kick and kick. The meds for it work really well, but make me very tired. All I am doing now is trying not to think about how itchy I am, I hate digging myself up like this, but it feels so good to just scratch--kind of like a mosquito bite. You know you shouldn't but it itches too much to ignore.
I can safely talk about this right now, because the inspiration does not have internet in their new house. I hate when someone gets mad at me because I will not do a "big" favor for them that is out of my way and inconvenient. If you don't want an answer why pose it as a question? Or maybe I should say, be prepared for somebody to say no if they don't want to do something for you. I'm sure at one point in my life I did not like to tell people no, but now I have no qualms about it and will say no even if I just don't feel like doing it. I also hate when people have a problem and the only solution they can see is what somebody else can do to resolve it, or help resolve it. I am not interested in being the solution to any body's problems. It has never ceased to amaze me how many arguments I get into with someone over my lack of interest in doing something for them. I live by the motto, "Are you worried about my house payment?" or whatever is comparable. So excuse me for not wanting to go out of my way to help you out, I find that it is inconvenient and not going to work for me. Now feel free to be mad, but don't expect me to solve the problem of making me do something I don't want to do.
The other day my young ward asked me 2 questions that really stumped me. She is always asking questions, so that is nothing new, but to leave me wondering how to answer them is new.
1. She asked me why I am always friendly and talk to everyone. I never thought I was, I just try not to make others' day worse by having to deal with me. I'm real thoughtful like that. I may be in a foul mood but I try not to take it out on others, unless they say please.
2. She asked me if I always sleep with animals. Now we could go back and forth all day about whether or not I have ever slept with an animal, but I simply told her it is just to cuddle with, because just like Nick Lachey, deep inside me is a 14 year old girl who just wants to be held.
I'm no doctor but I think I can safely say that my left eye socket has been lined with broken glass. Also, the nerves in my legs have tied themselves into knots. They just want to kick and cramp, which seems very knot-like to me. I know, I know, my gift at diagnosing should be shared with the world, but sadly I am far to busy wondering what flatfoot put this glass in my eye socket to be helping others with their ailments. Come to think of it, my little sister said her right eye was killing her and she thought the glass idea summed it up pretty well, so maybe it is an alien abduction that we have here... I'll have to ask her if she saw any green men last night.
*Update: Even though my little sister lives in a small town surrounded by cornfields, which we all know makes aliens want to come and leave circles, she said she saw no green men, strange lights or flatfoots around, and she should know because she did not get home until almost 12am.
What is it about a man in uniform that just does it for me? I had to go downtown to the courthouse (I can't talk about that right now because I am still so angry about it I don't want the anger to seep off my fingers and burn out any eyeballs) and the officer that was manning the metal detector was HOTTTT! I'm not sure what the criteria for frisking is but I was willing to undergo a mutual frisking, because I am pretty sure he had a weapon on him--I'm talking about his gun, not something else. Of course I had to look like I just dragged myself out of a gutter--ratty sweatshirt, crusty hat, no makeup--it never happens when you look decent. Then leaving the courthouse I drove by a fire station where the boys were washing down their fire trucks. I was so busy ogling them I didn't see my turn and ended up taking it without even tapping the brakes, I could feel myself whipping around the corner on 2 wheels, while they looked in surprise at the idiot who took the corner like it was the Indy 500. But I don't care, it was worth it. I will take whiplash anyday for a good cause.
I set up this whole blog so anyone can comment or look around and remain anonymous. Not that I had much choice, it was a yes or no question and I didn't want to limit myself to only people who have an account on here. I have a little counter thing that keeps track of hits, like myspace does, and even gives me some fancy pie graphs that come in your choice of colors, but those are not too damning for anyone. I hate sites that track people or make you have an account to do anything. I also hate cherry flavored anything. And malted milk candies. OK, I'm done.
*Author's note: I hate caterpillars too, and lotions that smell like food, and itchy clothes, but that is all.
*Author's note II: and people who talk loudly in the library, uncomfortable bras, and tight jeans. I'm done now.
My little sister pissed me off recently; she told me that she would rather have to depend on machines to keep her alive then have an organ transplant from me, if it ever came down to that. Her reasoning was that because there was no proof that she would not develop MS from my organs, she would rather not take a chance. She had the nerve to be shocked that it made me mad. I told her that if my own family was so ignorant, what hope did I have for the rest of the world to view me as not contagious or not needing to be quarantined (as much as I love the thought of putting a "QUARANTINED sign on my front door)? I already know how kids see people like me, but I had naively hoped adults would be a little more informed--silly me. I make a point of buying good candy for Halloween because I don't want to be the crazy gimp lady that gives out the crappy stuff that pisses kids off. I told my husband that I was the kind of person that kids would not want to take candy from because they might catch what I caught--I was the same way as a kid. I remember avoiding certain houses where the people were smelly, scary, or just plain weird, and not wanting to eat that candy. But I must admit I get a ton of pleasure as dressing up as a zombie each year. I already walk like one and we live just down the street from a bone yard... although this year I was really feeling like being Miss Havisham. Nothing like a bitter dried up old maid to really scare the kids, or adults for that matter. One of these Halloweens I am going to be a bog body and give out some nasty, dark, tarry candy--after I cough on one piece to give to my little sister.
I know some people love them because they give you energy, and we all know how MSers need energy, but I hate them. Within the first year of being diagnosed (well, 10 months, but who is counting?) I went through steroids 4 times and hated it every time. The steroids make me sick, crazy and fat--in that order. Each time I did them I figured out that I gained 13.7 lbs, which brought me to a grand total of 55 lbs of weight gain--YIKES! Very few people can gain that much weight and not be considered overweight, and I am no exception. At my highest weight I was only at the high end of what is considered "normal" for my height and I felt like a fatted pig heading to slaughter. And now without further ado, my 3 reasons for hating them:
SICK Ohhh, the heartburn! I never get heartburn. Never ever for never never and ever. So I didn't know why my chest felt like I wanted to belch flames, and this with the Zantac that they give you. I guzzled Maalox and took the maximum of it and the Zantac, maybe even over it, but still no relief. I drank milk, water, and one time only vanilla shakes--nothing helped. It is just something you have to suffer through. Even after the steroids ended (I did them for 5 days) it took a long time for my poor, burnt up stomach to return to normal. They also make everything taste like CRAP. Even if you have nothing in your mouth, your mouth will still taste terrible. So terrible that throughout the night I had vivid and disturbing dreams about eating foul things and woke up once licking my pillow and another time spitting on my pillow to get the terrible taste out of my mouth. I learned to keep mints in my bedside table for when I get an attack of shitty-steroid-mouth while sleeping, and would wake up often to eat another one when taste would start messing with my dreams again. For those of you who have never had to go through the steroids and can't believe anything could taste as bad as steroid mouth, I have one suggestion for you: go lick the bottom of a very dirty cat box and see how good it tastes. That is probably the closest thing to it, yet I will still put my money on steroid mouth tasting worse.
CRAZY Rev your body up as much as you can and keep it there for 5 days. Drink pot after pot of coffee, smoke about a carton of cigarettes a day, do anything to keep you as wired as possible and tell me how you feel after 5 days of that. Heck, even after 2 days I start feeling the crazies attack me. I know some people stay in the hospital for the steroids, but I can't stand to. They make me want to run laps around the city and trying to keep me in bed would make me crazier. I read somewhere one person's take on steroids, something like, "first day clean the house, second day jump off the roof..." and I think that nailed it. And as crazy as the being revved up is, the coming down can be just as bad. I didn't do the oral taper the first time and I crashed so hard afterwards I could barely move for 2 days. I also felt like I was on a bad acid trip, things looked wrong... I don't know how to explain it, just not a very stable feeling. Then the last time I did them, after about 3 days of the oral taper I "went crazy" and cut my wrists with a razor blade. 5 Days in the loony bin gave me plenty of time to decide that I will never do them unless I lose my vision again--nothing will change my mind on this. One trip to the loony bin is enough in one lifetime!
FAT Imagine the most hungry you have ever been, where everything looks, smells and tastes exquisite. Or the worst case of the munchies you have ever had, where you could not stop nibbling on stuff and just wanted to inhale everything in the kitchen. Now add cravings that block out any other thought and you have a recipe for a fat ass. One time it was dairy products, milk, cheese, ice cream, but mostly milk. I drank so much milk I thought I was going to have to go to the hospital to have my stomach pumped, then the ice cream took its place and all I could think about is what I could possibly put ice cream on that I had not thought of yet. I can't forget the attack of The Chunky Peanut Butter that held me in its grip for the longest of any of the cravings. I gave up putting it on bread or apples, I just grabbed a spoon and the vat o' peanut butter. I suppose if I had more self control I could have fought these craving and not gained the weight, but when food tastes better than you have ever known it to it is so hard to resist.
I think this has summed up my feelings about steroids pretty well. If I ever feel too healthy, sane, and skinny I may consent to do them--if the attack it bad enough--but I don't see that happening... ever.
Which is bad news for my husband, he campaigned hard for the youngest cat but she wasn't having any of it. Highlights of this most recent poll in my house show:
People with MS smell better. We just do, scientists are still trying to figure out this enigma.
MSers are better housekeepers and make the bed about 141% better than those without MS. This study found that non-MS persons tend to leave more wrinkles and bumps in the covers and sheets-- if they make the bed at all. The non-MSer does not get the dishes clean, over does the laundry detergent, washes delicates with work clothes, and cannot clean a toilet.
The "normal" person has a harder time putting toilet paper back on the dispenser when it runs out. On-going studies suspect there may be a misfiring in the brain that makes it difficult to realize that your ass is sitting there using up the last square so REPLACE IT. They also were less able to recognize when they needed to double flush. Also lacking was the basic understanding of when is the right time to use air freshener.
People with MS are much easier on the eyes. Again, they are not sure why but found that those polled would rather look at the person with MS than the one without.
Persons with MS are better bedfellows, they sleep sounder and are more comfortable to drape yourself on making a "dogpile" much more rewarding. They do not flop around like a fish out of water or throw you out of bed for hogging it all.
MSers have a better sense of humor. Their jokes average about 1000% more humorous and are much better story tellers. They were also more likely to be well read in this study because those polled do not work and frequent the library about once a week.
Lastly, they brush their teeth more regularly, do not tend to forget deodorant, have less gas and look better in a bikini than the non-MS person in this study.
I would have liked to put "Men At Work" as the title because it conjures up much more pleasant thoughts than "under construction", especially as I have a splitting headache and am waiting for the ibuprofen to kick in. I am starting my own MS blog for the sole reason that I need a place where I can talk about my MS without wondering if I am boring others and also because I have a lot to say--guess that is two reasons, oh well. So by naming it an MS blog one knows that it is about MS. I blog like a mad woman on my myspace page, but try not to talk about MS too much; I needed an outlet for all things MS-like in my world. Also, as usual I welcome all thoughts, comments and such, on anything, not just MS. I am going to try to put this page together as quickly as I can so I can continue on my quest to say everything I need to say before I die--its going to be a close race.