I hate fluffy feel good crap. I get all the MS magazines -- and I do mean all -- but I can't always read them. I get so irritated by all the happy-go-lucky stories of those whose have MS yet still went on to conquer Mount Everest while carrying the ones that could not make it on their backs and singing Kumbaya. I even think negative thoughts about some of the people whose stories are supposed to inspire me. How can I empathize with someone who is talking about their vision problems while they have eyebrows so overgrown it covers 75% of their vision field? I can't. Trim those woolly caterpillars that climbed onto your face and died there, then get back to me. I actually prefer the more technical magazines, like MSQR, because they just give information while keeping the sap factor to a minimum. Now that is inspiring! I want to know the how and whys about this disease without all the yucky feel good junk. I also hate memoirs. Don't get me wrong, there are some truly great stories out there, but if your story is, "I got MS and my life changed" I am not interested. Have we not all been there? Unless you have a truly outstanding story I do not care. It irritates me too when I hear these stories and the people have a much milder disease course than me. I want to hear about people who have an aggressive disease and how they deal with it, not from those who only have an attack every other year. I can't relate to that; I have been on a downward spiral from day one. I have never recovered totally from any attack and even now it keeps chipping away at me; so if your disease only rears it's revolting head once every 2 years and you still recover almost 100% after them, I don't care. I just cannot relate to you. My goal is not to put a happy, insipid, I-shall-overcome spin on this disease. My goal is to be the crazy gimp lady that scares kids -- you know, the one the kids don't want to take candy from on Halloween because it has to be tainted coming from me. I am not going to wait until I am an old lady to wear purple, I never wear purple because I am not fond of it and I look like an Easter egg in it. I am going to be eccentric and do as I please every step of the way, and I know I offend some MSers out there who want to be dignified and not have a sense of humor about all this. But, once again, go cry in your petticoat, because I don't care. I want to hobble around town with a stupid wig on backwards if I feel like it; use the motorized carts when shopping and run into displays (those damn controls are so touchy, and it takes off too fast); embrace my inner hideousness and make people think this is my costume for Halloween. I aspire to being the crazy cat lady as I age, to horrify kids who think I'm contagious, give stupid answers to those silly enough to ask what I did to my leg, drink my water from a brown paper bag all the while rocking and cackling to myself, I don't want to fit into any mold or inspire anyone. And I think I have a good start towards my goal.
Yesterday the 2 people whose opinions mean the most to me -- they being the ones who don't pay lip service and say what they think without editing it to save feelings -- told me that I am letting my MS rule my life. They both felt that I have lost myself to this disease and am not myself anymore. Hearing this from the 2 sources I trust the most hit me like a train. I realized that I need to start working on ME again. It is true, I have lost myself, but couldn't everyone with a chronic disease say the same at one point or another? I am now starting a campaign to get myself back and put MS in the back seat where it belongs and not let it define who I am. So to show that I am fighter willing to become more than just a heap of rotten MS, I am going to list the attributes that I am going to make more important than what I cannot do. Sad thing is I have come a long way, but I realize that I still have a long way to go. But enough of this maudlin crap, here are the things that are going to be more important that having MS:
I amuse myself. I know no man is an island, but I am a peninsula. I am content being alone, never bore myself, and enjoy my own company. I hate cell phones because I hate people being able to get ahold of me where ever I am. I like my alone time and need my alone time to clear my head and keep me sane. This may not sound too earth shattering, but so many people need someone around all the time; I am not that clingy beeotch. I am okay alone, without a man, just my family and friends and I am happy.
I may not be able to walk the MS walks, but I have a toilet bowl that is spring time fresh. I am a meticulous housekeeper and very organized -- I liken myself to a Stepford wife. My clothes are always right side out and hung facing the same direction. I hate how clean I am sometimes, makes me feel like an old person with plastic on their furniture that makes you afraid to sit anywhere. I hope I never become that rigid, but I do enjoy a clean house. I feel like things are in order when my house is in order.
I don't mean to brag but I am a good cook. I almost never use recipes, just consult my own ideas of what would taste the best, and my family is usually pleased with the results. Of course, they are not too picky, so maybe I shouldn't toot the cooking horn too much.
I have several books that I have written for my nieces and nephews and I need to get off my lazy arse and look into publication. They enjoy the books and we read them all the time. Why I have not sent in the manuscripts all boils down to rejection -- can I handle it? Rejection hurts, but never trying may be worse.
Lastly, I am not shy, will talk to anyone or anything, sometimes to the embarrassment of my little sister. I can go to MS events alone and talk and have a good time and not worry about having no one with me. So if you get chatted up by a gimpy woman with too blonde of hair (I lost track of the time and it came out lighter than I wanted) it may be me. One sure fire way to tell is if I can make elaborate tunes from a nose whistle -- one of my more embarrassing talents.
Update: I am also going to make myself a special Official MS Badge for when I need to "pull out the MS card." I have a feeling you will know what I mean. Too tired to go for a walk with my family? Pull out the MS card. Too hot to leave the house and others are trying to make you? Let me get my card. Forgot to get that ice cream again? I have a card for that too.
One of my favorite recent comments came from Braincheese herself, of course. She said she would tell me to join the club but I am already a card carrying member. This got the rusty wheels in my head turning and I decided I need to make myself a membership card. I am going to get a picture of me, sitting crooked -- because I have that body dismorphia (right term?) where I have a hard time figuring out exactly how to sit on stuff -- and put on a fabulous, ridiculous wig and maybe even include my arms at their strange angles they like to take and put it on my own card. I have visions of attending all the MS events this year with my card in hand, to prove that I am one of them. When I get it finished I will post it on here. I know I have said this before but it is worth repeating: The best gift MS gave me is the freedom from caring what others think of me. I let that liability go a long time ago, and I have never regretted it. Now, others who are with me may not agree that it has been a blessing but, you guessed it, I don't care.
Having just passed the Ides Of March, I felt the need to utilize the famous quote from it -- that and work it into a topic that has been on my mind. Something no one ever tells you about the treatments they are trying to make you do is the side effects of them. When I was first diagnosed I went along with whatever they wanted to do to me because I didn't know any better and was still in shock, so much so that I didn't do my homework about a lot of the crap they pumped into me. Now I have both done my homework and lived through some pretty heinous experiences and am now living by the first rule of medicine: do no harm. My experiences are not necessarily indicative of what anyone else will experience, but I still think people should know what could happen with some of these things. So without further ado, here are some of the side effects of that I experienced:
Steroids: I am going to go in chronological order. The steroids SUCK! 5 Days of going to the hospital for 6 hour chunks of time to have stuff pumped into me that revved me up to the point that I wanted to run home instead of drive after getting out of there. Being so jacked up on the steroids that I can't sleep then the crash afterwards where I can barely move for the next few days after going off of them. They make me sick to the point that no medicine can touch the heartburn; make everything taste like rotten manure afterwards; then make me so hungry that I eat and eat and eat to where I think I may need to go back to the hospital to get my stomach pumped because I ate the whole jar of peanut butter (extra chunky, of course). The psychological disturbances are glossed over when they shouldn't be -- they are very real and can be very dangerous. After my 4th time of steroids in about 10 months, going off the taper and feeling crazy, I took a rusty, dull, and old razor blade and cut my wrist, which gave me 5 days in the loony bin to ponder the whole thing. And ponder I did. I decided that I will never do the steroids again unless I lose my vision -- and even then it will have to be really bad to make me even consider it.
Avonex: I have nothing against the interferons; if they work for you and you are happy on them, I am happy for you. But nobody told me that they would make me even more tired, depressed and (temporarily) sick. The first couple of times I had my injection (I was on it for 6 months and had at least 2 attacks) the "flu-like symptoms" were horrible. It was like having the worst case of the flu ever. I felt like someone had left the door in my chest open to the Arctic. I was so sick I had a hard time getting out of bed for some ibuprofen. The added listlessness and depression made me not want to get out of bed -- ever. I didn't know much about the interferons so I thought it was all part of having MS. But then I switched to Copaxone and fell in love.
Copaxone: I loved Copaxone. There was no added depression or fatigue. I felt like I had come alive again after Avonex. The only downside to Copaxone, for me, was the itchy injection sites. It is like having a huge mosquito bite that you can't leave alone. I would itch them into scabby red welts, but it felt too good to stop scratching. One of the less common side effects that I was unlucky enough to experience was the "breast tissue enlargement." My little sister is a 36 A-B and I was a 34 B-C, but after being on Copaxone I became a solid 34 D. For awhile there, before I started losing weight, I was even getting double boob from my D's. But there was no way I was going to go up a size. My little sister, seeing me in my bra said, "I need to get me some of that MS stuff!" It may sound great, but I hate it. I always thought having bigger boobs would be great, but it isn't. I miss being smaller; I think it makes you look thinner. And I hate wearing little T-shirts that hug them and show them off; I just want to mash them down and go back to my old size. Now I have lost over 20lbs but am still firmly in the 34 Ds and very disappointed. Now I am worried that if I ever have to go back to Copaxone it will increase my bust size even more -- EEEEEKKKK!
Novantrone: I know Novantrone has done some wonderful things for some people, but it didn't for me. I was so sick I could barely move (even on the Zofran) and laid in bed thinking of all the things I needed to take care of in case I died. After the sickness subsided enough for me to get up again, I took care of the things I didn't want anyone to see, ever. I was stuck in the house for 2 weeks because you can't risk being around people because you could get dangerously ill, and I didn't lose a hair. That was probably the worst part of it. I was ready to be bald and wear my mullet wig crooked. My luck that I get all the bad with none of the good. My neurologist told me some people would be jealous that I didn't lose any hair, but I am jealous of those who do. I have a fabulous collection of ridiculous wigs that I have been dying to parade around town in.
Tysabri: Honestly, I can't think of much bad about Tysabri. It has been GREAT! There is not the depression like with the interferons, because it works in a different way. The only thing I have noticed is that after the infusion I crave sweets. Silly, I know, but I always pack something sweet when I go for my infusion. I have been on it for a little over a year now and my only worry is that it will be pulled from the market for good. The only downside is the cost. It is EXPENSIVE and when you add the charges for the infusion center it almost doubles.
Not sure how to categorize it, but I get a certain "feeling" when I am getting attack-y. I get a depressed, lethargic, almost like I am coming down with something feeling. I can barely pry my lazy arse off the couch and want to lay in bed and sleep all day, but I am not so much sleepy as just tired -- if that makes any sense. The worst is my head gets so fuzzy and easily confused so that I have to slow down and really think about something or I forget the simplest things, like getting lost on my most routine routes around town. First I thought I really was coming down with something, but the last few days of fuzzy thinking and depressed lethargy and no signs of any sickness (I being one of those that never gets sick unless something they pump into me makes me ill, which I now try to avoid) have made me realize that what I am really feeling is attack-y. I haven't had a full-blown attack for over a year now (13 months to be exact) since I started Tysabri in February of '07. My neurologist said that attacks on Tysabri are rare,which I am still a little puzzled about. If it reduces attacks by 70% wouldn't that still leave 30% of the attacks? Maybe my head is too fuzzy for the logic there; the only thing I am an overachiever on is my MS -- it being aggressive and swift, unlike me. Although she did say that since it has been brought back to the market there has been a small incidence of neutralizing antibodies -- and that scares the hell out of me. What I am curious about, and I may post this question on some of the other MS sites, is how others feel when an attack is coming on, do you get a certain feeling? Or do they just drop out of the blue on you? This is the longest I have gone without an attack and I had almost forgotten this feeling; too bad I couldn't forget it. But I don't want to look the no-attacks-for-a-year gift horse in the mouth. Before Tysabri I was averaging 4-5 attacks a year. Now back to my busy schedule of being lethargic, confused and tired. Blindbeard out.
Middle of a cornfield, Nebraska (AP) Recently I was able to sit down with the reclusive Blindbeard and get her opinions on everything from MS to the meaning of life. She has been on the top 5 of people I wanted to interview so I was thrilled when she finally consented to talk to me. What follows is my enlightening sit-down with one of the most difficult to pin down and outspoken people with MS in this area.
Interviewer: Its great to finally get a chance to meet you!
Blindbeard: Well, Mr. Interviewer, its great to have a chance to get my say.
I: Actually, its Miss.
B: Really?! You might want to think of waxing your upper lip then.
I: Anyway, so tell me how you feel about having Multiple Sclerosis.
B: Having Multiple Sclerosis is akin to sucking on a bag of dead manure.
I: Wow! That bad?
B: Some days, worse than that. Imagine having all the things that used to be so easy become much more difficult, more of an ordeal. Now throw fatigue and pain into the mix.
I: Has nothing good come out of you having MS?
B: No, there is some good. I no longer have to worry about being more conservative for an employer. I could wear my mullet wig sideways and not care if prospective customers might see me. I can dress how I please and not worry about what people will think. It has freed me from ever having to worry about what others think of me.
I: Anything else good that has come from it?
B: Nope, that is about it. Now move over or eat a mint, you're killing me!
I: I see what you mean about not caring what others may think...
B: Yeah, its nice not caring.
I: So what is the worst part of having MS?
B: Gee, how much time do you have? Frankly, it is not knowing what the future holds. And by future I mean tomorrow and a year from tomorrow. You can't count on anything because it is never static. I may be good today but tomorrow I could censored my pants in public. You never know.
I: How has it affected your marriage?
B: There is a reason that divorce rates soar to over 75% when a partner is diagnosed with a chronic disease. My husband worships the dollar, so my not being able to help out in the money department has hurt us. That and he is not always understanding of my limits.
I: Sounds like he is not very supportive.
B: He is a pigheaded pain in my arse. He infuriates me and knows how to push my buttons, like telling me its not fatigue but laziness, or asking me if MS makes it impossible for me to keep the toilets as fresh as he wants them to be when it is somebody else's job.
I: So what did you think of the whole Tom Cruise videos that burned up the internet there for awhile? And his stand on psychotropic drugs?
B: Tom Cruise can suck his mother's big, floppy censored! He needs to eat a sack of censored! How dare he tell others what to do or that his religion knows what's best for me! I think censored Tom Cruise can censored and eat a fat censored! He can take his "vitamins and exercise" and stuff it censored!
I: He has a right to his opinion though.
B: I agree. Everyone has a right to their opinion. It is when they are actively trying to change legislation or have a "campaign" to stop people from exercising their own opinions and making their own decisions that I have a problem with their opinion.
This is Part I of my interview with Blindbeard. I spent several hours with this fascinating and veritable enigma of a woman--hours that changed my perspective on people with MS. I realize that you cannot put them all into one category. They are as varied as the ways MS can affect some one. Part II will be coming later, first I need to wax my upper lip.
Happy Anniversary to me, I would rather have been bitten by a plague infested fleeeeea. I walk like the earth's crooked, And some days I can't see!
Today is my 3 year anniversary of being diagnosed. I hate when people say they got it on X date, because I can trace mine back to my early 20's knowing what I know now. So I always say I was diagnosed on this day.
Three years ago today I was happily oblivious to any festering problems with my immune system--in fact I had never had any real problems. I remember having my left thigh go numb once or twice in the past, and I didn't know why I had to nap every day when I never had that problem before. I just chalked it up to laziness and the foster care we were doing at the time; I figured it wore me out so much I was more tired than usual. Then came an icy late February day when I got a call from the school that one of my foster girls had wet herself and needed a change of pants and undies. On my way out I slipped on the ice on the front steps and fell all the way down, bruising my ribs and hip. About 2 weeks later I noticed my left leg is numb and I am having terrible double vision--so much so that I had to close one eye to drive. I wasn't going to go to the doctors because I thought it was just a pinched nerve and no big deal. My husband told me to just go because we had already met our deductible and I never go to the doctor when I should. I tried to see the P.A. but when I told them what the problem was they put me in with a doctor. I had a CT scan and the doctor called to tell me that I didn't have a stroke and I don't have a tumor. That was when I realized that something was really wrong. When they told me they suspected MS I wasn't sure exactly what MS was. After I did some research I decided that I did not want it. But of course the ensuing MRI and spinal tap were against me, and silly thing that I was, I thought it was an option whether or not you became disabled. I thought if I got enough exercise, ate right and took the DMDs I could stave off any problems. All I have to say to that is a humorless ha ha and ha. Being the huge genetic loser that I am, I also got a very aggressive disease--my neurologist told me (after I started Tysabri and it was working for me) that I probably would have entered a progressive phase within 2-3 years--that made my blood run cold. I have been on Avonex, Novantrone, Copaxone and now Tysabri. I did the steroids 4 times in about 10 months gained over 50 lbs (and was still not considered overweight. I was very thin when I was diagnosed.). I have come a very long way, even though it may not seem like it. I no longer want to off myself, but have let everyone close to me know that if I ever reach a point that I can no longer care for myself, all agreements about not committing suicide become null and void. The funny thing is I forget what is "normal" for a person of my age. They can stay out till all hours? Not need naps? Walk the entire zoo and not be wiped out the next day? Go jogging, which I miss more than anything. It seems wild and crazy to me. But I also think that it is good that I am adjusting to my own "normal," because thinking about all the things I can't do could get very depressing. On the plus side, I can read all day now, my house is kept clean, I enjoy the cool weather--when everyone else is freezing it feels refreshing to me, I go to bed early so I always get to see the sunrise (my favorite time of the day. I love being the only one up to enjoy the morning all to myself and prepare for the day), and last but not least, I am always here for the little girl I am raising--no babysitters, healthy meals, someone always around to make sure everything goes smoothly and to listen to all she has to say, which is a LOT!
*Author's Note: I forgot to mention that my husband and I have decided to part ways. I posted this on my other blog-- for my family and friends--who all know we are splitting up and I wanted to explain why and let people know the reasons behind it.
I stole that title from my little sister. After she and her ex-husband spilt up and started a long and bitter divorce/custody battle she could not talk about her ex without starting off with, "that donkey raping, shit eating, mossy toothed, rotten breathed corn hole ex of mine." And now I can totally understand why she would say such a thing. Although my husband and I are not fighting, I am still angry and disappointed about this whole situation. And if I hear, "don't you remember your vows?" one more time I really am going to take an axe and give my mother 40 whacks. Nobody stands up there on their wedding day thinking about a divorce or how it is going to end. NOBODY! And hearing that stupid phrase come out of certain womens' mouths, who put up with too much crap, pushes me over the edge. My mother-in-law has been married over 40 years to a drunk that regularly tears up the house and gets rough with her in drunken rages. And sadly, my husband is like his father. When he is not drinking he can be so kind and patient. But one beer too many and there is going to be problems. About a year and a half ago my husband drank way too much and started throwing stuff around the house, picked a fight with me by throwing a half full beer can at me, which sent me over the edge. I picked it up and threw it right back at him, starting a huge row that ended with him pushing me back into the dining room table making me fall over and pushing the zipper of my hoodie into my neck making a big, red welt. This was on the same day that I fell outside the library and had to have Princess help me up. I made him leave and called the police, filed a report and let him deal with the consequences of his actions. My mother-in-law was upset that I called the cops--she said, "its not like he has done this 5 or 10 times before. If I called the cops every time J. did that, I wouldn't have him anymore." I still don't see any logic in her statement. And all it did was make me madder and I told her exactly what I thought of all that. I truly believe that people can make mistakes and be forgiven. I always tell Princess that when we make a mistake what can we do about it? Make it right and make sure you never do it again. So I let my husband come back, but he had to clean up the house, apologize to all that were involved and NEVER do it again. I have to say it has not happened again, but sometimes I still see that grain of anger in his eyes that if I fanned the flame even a tiny bit could erupt into something very ugly. I am not about to tell anyone what to do in their lives, I only know what I can do with mine, and I do not want to spend my life walking on eggshells. Especially with this disease. What would happen if I was less able to defend myself and this happened again? Could I live with myself knowing I stayed around for round 2 when he showed his true colors? I am afraid it would destroy my self-respect and self-esteem--neither of which I am willing to sacrifice. Worse than all this is the fact that my trust in him was destroyed. We tried to patch things up and go on. I wanted to trust him again, but I can't. Not when I don't trust his temper. And when the trust is gone what are you left with? Doubts and insecurity in your relationship, which is impossible to build a healthy relationship on. So the foundation of our relationship is fractured beyond repair and I know I could never trust him wholeheartedly the way you should be able to trust your spouse, especially with the care of your heart and soul. Being what I am, I took my heart back and plan on keeping it to myself. My trust in men is at an all time low. What started out as a gentle kind man has turned into something the exact opposite. I just want to wrap this up with my self-respect intact.
I hee-ed and haw-ed about whether to share all this, but decided that it is nothing to be ashamed of and I don't want anyone in a similar situation to try and hide it or be ashamed of it. The shame is on those that do these things. Not on the ones who take the brunt of it. I am not going to sweep this under the rug or pretend that it never happened and I hope it gives courage to others to do what is right for them, whatever that may be.
One of my all time favorite Far Side cartoons, where the cow is doing poetry and talks about the lush green grass on the other side of the fence and he ends it with, "darn the electric fence, darn the electric fence, thank you." I am feeling that way now. I filed for disability almost 3 years ago and am still waiting for my day in court. I get so frustrated when I start thinking about it--almost to the point of rage. I know that I am not going to make a fortune off of it, I just want a little help with all these bills. A way to improve my life and give me some freedom. I hate being unable to help out in any way. I wish I could write a nasty letter to the government to crab about it but some how I don't think that would get me too far. I get so angry when I see people who got disability for lesser things than what I have and I start to really understand the meaning of "going postal." I know I probably should not bitch about not getting my free money, but daggonit, it is based off of what I earned in the past. I don't know how people without someone who makes decent money make it. I asked my lawyer about it and he said they aren't--they are slipping through the cracks. So I know I should be thankful that my husband makes a modest income that keeps our heads above water, but I hate this lack of financial freedom or the ability to help out even a tiny bit. Arg! I just had to bitch about this. I feel so hemmed in and trapped by not having my own money to spend and really want to say a bunch of negative things about the whole SSI system. But I have a feeling that most of us feel the same way so I don't think I need to give a laundry list of all the reasons I want to go throttle the people in charge of disability for being slower than a herd of salted slugs.