Archive for May 2012
May 22, 2012; Tuesday.
Yeah, you guessed right. I haven’t been to Word Press to get my blogs straightened out. There are all out of whack and in the wrong order. I’ll get around to it some time soon, but for now let’s just ignore it.
Remember the umbrella I asked for in my last blog? Did anyone come up with one? It’s still pouring here under my blue skies and my silver lining is just out of reach.
Look, I’ve been doing all the right things. I have been watching my weight, trying to cut back on the smoking, took up classes at Robert Wood Johnson Wellness Center, and am building an addition to my house so that I can get around it easier without the worry of the steps.
I have dropped my Thursday knitting classes though. You want to hear the story of this because it really has me pissed off. Nah….I think I already told it and it is best if I just let it go. However; I can still be pissed off about a group of women who absconded with my girls and moved it without telling me while I was in the hospital.
So face it men and women in here. No matter what your ailment is or your disease, ultimately everyone is out for themselves. You will not be treated any different in the long wrong. You will get a lot of “oh poor you,” and so forth. People may ask a lot of questions at first because they are curious or because and more than likely, they think maybe they too have it.
I’m feeling bitter. Can you tell? A dear sweet friend started this blog for me as a gift because he felt I was a good writer and people needed to hear my take on things. He was so sweet and I loved him very much. But guess what? He too has gone on his merry way either hiding underneath his own covers and won’t have anything to do with the site. But I need his help because I’m just a musician/composer/artist/writer and so forth. I have never claimed to be a computer wizard. He is disabled as well and has another whole set of issues to contend with and somehow I messed up that connection with him. I still love him as my friend and I wish he would come back to me.
But do you see why I feel bitter? In the long run, they all seem to run away. I can count on maybe one hand the people who would stick by my side to the bitter end. However; I can count on an auditorium of people who would come to my wake! Why? Because I have become known around here. I’ve been in the papers several times and I do work for the good of those who have less than me. So I’m well known. So there they would all sit talking about me or something else, but the minute they left the wake, life goes on. I’m just a memory of a good lady who once lived in Princeton. The lady who loved to hug.
Yes, I’m still in the dumps! I have a right to be just like you. But you know what? Right after I get off here I will begin my work with my music and my art. I will finish painting the kitchen and I will keep busy busy busy. It’s the only thing that keeps me going. I don’t need a psychiatist even though I have one. I need the meds he gives me. But I’m the one who could teach him what to say to a person like me who is borderline between climbing the walls and screaming my head off or walking around my garden calmly picking out the weeds with my two little dogs.
I know my own answers, I just choose to ignore them right now as I write to you. I want you to know the whole me, not just the pleasant person.
I’m frightened because I’m having a cancer scare right now. I had three biopsies done and I’m sitting here waiting and in horrendous pain. I had to go to the hospital the other day just to have an afternoon of morphine.
So there you have it! Me! The whole me! The happy, sad, angry, bitter, bubbly and mostly positive thinking me.
I don’t know if you’ve noticed but on top of this blog from now on, I’m going to date it and so when things get messed up again I can fix it myself.
Do something nice for yourself today. I’m going to do something nice for me as well. Perhaps that silver lining will show up again.
Welcome to MSLIFE If you are new to this blog, please read from the bottom up so that it will make sense to you. This is the latest blog, not the earliest.
My Word Press Blog is very messed up. Somehow, the blogs are out of order. I don’t know how to fix it. Surprise, surprise? I’m no techie and I can’t learn new things. So until I find someone to help me, for the time being, I will just leave it as it is. It doesn’t matter anyway, for now.
What can I say to you that you don’t already know? I am feeling the way many of you feel a lot of the time. It seems that with MS you can go for periods where you are “with it” in this world, or you are “out of it”. I have spent an extended time “out of it.” So you see, even though this blog is about enabling ourselves to place one step in front of the other and just live for the moment, I can’t even do it myself all the time. Sometimes you have to crash and burn. I did.
Don’t get me wrong. I don’t think anyone else who is not close to me could tell. I didn’t get that far where I hid under the covers and didn’t come out. I kept plugging away at my life going through the motions in order to keep the stares away from me. What a way to live huh?
You see, I’m a person who doesn’t like it when people are walking around saying “poor Maggie”, or “did you hear about Maggie?”
I hate rumor mills because half the time they have it wrong. It started as a small fish and turned into a whale or just the opposite. So I try very hard not to give anyone grist for their conversations. I don’t like ringing ears. I’m very private and my business is my own.
“What?” you say. “Then why in the world are you telling the whole world about your days and the things you go through?” Well now calm down folks. This is because I am writing the book that I could not find on the bookshelves in the beginning of my diagnosis.
Recently, I have heard of others who are writing books as well, but its the same thing all over again. What I mean about that is this. They write about all their travails and it’s pretty much a book about what they’ve tried as far as ABCs etc… I steer away from all that. Oh sure, I write about the things I’m going through in order to inform the public what I wanted to know in the first place–HOW DOES ONE LIVE ON A DAILY BASIS WITH MS. What next. What happens to a person. Do you keel over and die? Do you go from standing to sitting in a wheelchair in short order? What happens?
This is just one story. There will probably be many others once this gets out. I’m here to address my issues and yours whether it is MS, Parkinsons, or whatever; then I try to put a spin on it where we can do something about it instead of letting it take over our lives for as long as we can
It’s truly been a battle these last few months and funny enough, it had very little to do with MS. I landed up with a kidney stone that they couldn’t smash up. So they had to operate. Then they didn’t take the catheter that was left behind to keep the ureter open for a week out completely after that week was up. So I had to take it out myself without benefit of anesthesia (topical that is).
This caused a lot of stress………..and you all know what stress does for people with MS. It exacerbates it. I continued to have pain down in my vaginal area to this day. Five months of pain and all the doctors do is send me between them. “It’s not my department go see a gynecologist.” Then, “there’s nothing wrong with you from a gynecological standpoint, go back to the Urologists.”
Test after test were done, all of them negative. The funniest one was the sonogram of my uterus. Huh? What uterus? I had a hysterectomy years ago! So there we were with goop all over the place looking at nothing. I didn’t have to call for the results of that test.
Measwhile, pain??? Hey docs I’m in pain! The urologists gives me these pills that turns my urine orange. It didn’t do a thing, so after two weeks of that, he gave me another pill that turned my urine purple. Hey docs, I’m in pain? I guess those pills were to make my urine less acidic so it wouldn’t burn when I urinated? I don’t know.
Hey again. It’s been hours since I started this blog. I had another Doctor appointment with my primary.
TO BE CONTINUED DUE TO PERCOCET……………………………
I’m back again, but several days later. Isn’t it fun not having your head on straight and not being able to remember what you were doing or where you left off? It ocurred to me today that I had a draft going, I’m here now.
Okay so let’s catch up! As far as the pain I’ve been having? It’s still here. I sit this way and that way and twitch all the time because it hurts where it shouldn’t hurt. Finally, my gyenecologist found what my problem is. It seems I have a vulvar lesion and we don’t know why. He sent in a smear and it came up negative. I saw him the following week and he did a more painful smear and sent it for cytologic exam. It too came up negative for STD, herpes, etc…
“Hey doc, I’m in pain?” Finally, got some pain meds to help me get through this. Meanwhile he wants me to see a specialist in Philly. I looked up the Doctor’s name and she is an oncologist. What??? I was told the good news is that so far, there are no indicators for cancer, but just in case………………..?????????? He wants me to have a biopsy and see this other doctor at a cancer center.
When it rains it pours. Anyone have a spare umbrella? There are dark clouds above me right now and I want to poof them away. It seems the only way I can do that is to take it step by step, follow doctor’s orders and be done with it. Perhaps then I’ll find my silver lining again.
Ok, ok, enough of this stuff. So that’s what I’ve been dealing with medically. It’s a lot of stress and a lot of pain but I deal with it. My shower is a lovely and perfect place to cry. The tears mix in with the water coming down and no one knows any better except for the redness around my eyes that I can easily contribute to shampoo or whatever.
You probably are wondering why I just don’t give in to my stressors and let the people around me cuddle me and help me through all this. The simple but unfortunate answer to this is that I am stronger than they are, emotionally that is. Oh they know that I’m worried and a little preoccupied these days and some who know me know my little games and second guess that I’m having some pity parties on my own. This is okay with me, after all what is a party if you don’t have guests?
I just don’t want to have indepth conversations about the things I’m going through. It makes it seem too real for me and that is sometjomg I just don’t want to have to deal with. It’s my way of coping until I crash and burn.
I keep busy. Keeping busy keeps all my fears at bay. If I have other important things to preoccupy my time, then I’m jappy. There has been a lot of construcion work going on at my place. You see, we’re making a Master Suite on the first floor so that I don’t have to deal with the upstairs veru much. We have turned a two-story home into a Rancher of sorts on the first floor. Isn’t that a good idea?
Alright, I admit to being under quite a bit of stress these days. This leads to an exacerbation of symptoms. I had become persona non grata for the past couple of months. Right? I don’t believe in inflicting the people I love with a litany of aches and pains or worries. I do state them, but only once or twice. The rest of the time I answer with a glare and they all know what that means. It’s been difficult, to put it mildly, but gradually left to my own devices; I found myself bored with myself and my problems. Mind you, nothing changed symptomatically but a lot began to change psychologically. When this changed, I found my strength again.
I’m here to tell you, like it or not; people will not tolerate our problems for long and I don’t blame them. Why? Because listening to my internal self eventually brought me out of the doldrums and back into the light of day. I hated being with me. I was boring to myself and I didn’t do much of anything but suffer. Which made me think about how dying would be someday. It’s a personal thing. Everyone will be sad and supportive up to a point, and then life goes on for them and you are left alone inside with yourself. at least that’s how I feel. You don’t have to think the way I do.
Our disease is relentless, unpredictable, and altogether nasty. Add to that the normal other medical things that can happen to a person, which is happening to me right now; well then, what a mess! It doesn’t have to be that way. However; it will be at first. We all have our own way of dealing with a myriad of unexpected medical and emotional turmoil. I just told you one way of coming out of the darkness of MS along with the possibility of cancer with the additonal turmoil of normal life that continues and whirls around you on a daily basis. Either you throw your hands up in despair; I did at first, or you turn it around and learn how to like being with yourself again.
It’s a conundrum.
Now I’m off to Word Press to find out how to get my blogs in the right order. All my love and prayers are with you all because I know that only we can understand each other. There is no way others will ever be able to understand what we go through. You have to endure what we endure to understand it.
I will be back. Until then, love yourselves and then watch the miracle of others loving you back.