I want to write something just for me...just to get it out.
Okay so I am losing my mind. Bit by bit. Nahhh I know I am being melodramatic. My mind is here I am just not able to think straight.
And to think people use drugs or drink alcohol to reach such states.
I have children who need me. And my mind is fucked up. I used to be sharp and now...hell...I am having trouble conversing...remembering little things...and sometimes big things. I have misplaced bills. I forget what I am supposed to be doing. And I'm tired. I get so tired. But I keep forcing my brain to work.
Yeah I know I don't talk about this too much. It is because it hurts.
People expect me to be the same...to function just as well...to be normal. But I'm not.
I'm not sad. I am just...staring at my reality. Am I scared? I can't go there. I don't have the luxury.
If it were just me...oh hell...I wouldn't care. But my kids. My youngest doesn't understand. He just needs...so much. He will be in my care probably the rest of his life. His autism is...severe. Oh god I worry about him.
I need to fire my neurologist. A simple appointment she said would be made...was never made. If this were the first time then sure. But a year of this fighting the system and I can't do this any more. Four phone calls later and I still do not have my next MRI scheduled. And I get attitude on the phone. Four friggin phone calls and I cannot get the MRI scheduled. When I do get my scan I am going to take my little lesioned self with a copy of my MRI and go to another doctor. They deal with neurology patients...people with Alzheimer's...people with MS...and yet they make everything so damn difficult. I do not understand.
I don't even want to have this MRI. This is the one to see how things have progressed. This is the one where I get big pressure to take the meds.
I don't want this disease. Is that fair to say?
People depend upon me. And once again....I am so damn disappointing.
I keep going, going, going and sometimes every once in a blue moon...I...have to just stop.
My thoughts blow like the seeds of a wish flower into the spiraling winds.
Come sit a spell and shoot the breeze. Sweeten the day with a little synchronicity...
31 comments:
Even though you may not see it yourself, your strength comes through in this post. I'm sure the people who depend on you see that as well. My wife and I were very touched by this, and our thoughts and prayers are with you.
I don't want you to have this disease, either. Add that to your thoughts seeding the future wish flowers. And I also wish I were a neurologist and I'd schedule your MRI but I am your friend and can tell you one thing for sure: you are not a disappointment, not even a damn one.
Oh Sweetie~You don't give yourself enough credit! You are such a force of strength and grace.
I've had to request copies of MRIs when I've changed doctors. They grumble, but it can be done. I find myself shocked when I meet a caring, compassionate and smart health-care provider.
Here in PA, we have "Annies List", an on-line clearing house. It lists everything from doctors to housepainters, and people who've used them write reviews. Might be worth seeing if they review in your neck of the woods.
Wishing you a positive MRI, and that your jumbled brain is just a sign of old age!
You're nothing if not coherent here. You've every right to let go on this doctor's office and to let them go too. :) I think if you post their phone number, we'll all call, and give them a piece of our mind.
It's a very insidious disease, as you well know. I wish you the best.
You are NOT a DISAPPOINTMENT!!! This disease sucks!!! Nobody deserves it and I wish that you didn't have it. Heck, I wish I didn't have it.
I've had times where coherent thought was as solid as bubbles. The inability to remember and think through things is infuriating. Makes you feel incompetent and worthless which doesn't help the situation any.
The thoughts and clarity has always returned, sometimes without warning. Keep in mind that you are helping so many people through your words online and through your presence in real life.
Regarding the neurology office, I would also be frustrated and angry. You know that my office is very different. They've got the system down pat.
Keep in mind that you can certainly fire your neurologist, get a second opinion, and decide for yourself whether you wish to go on an MS drug.
I really hope that you feel better soon. I'm here any time you want to talk. Just wish that I were in your neighborhood to give you big hugs and twist the arm of your neurology team. tehe
Hey, there! I know this blues music oh so well, and it's so damn natural to beat yourself up when you're in that state. My wife has lupus, and every day she gets up full of energy to do a million things, and every day after five or so hours of all kinds of creative work, the disease takes over and drops her with fatigue, endless fatigue into a big chair or bed - not to mention the painful attacks on her central nervous system. And every day this is a total surprise, and she feels like a slothful, worthless person, just lying around, sleeping. Doesn't matter what rational spouse says, this is no way to live! So go ahead and yell and scream about it all you want. Even if you do beat on yourself unfairly, that's part of the anguish, the loss, the pain! Then, when you're feeling better, remember what everyone is saying here - you're a strong, courageous, beautiful person, and we love you for sharing so much wisdom through your wonderful writing. Despite what you have to live with, you show us also what transcending the bad stuff is all about. Thank you! Much love!
John
It is ABSOLUTELY fair to say aloud (via blog) that you don't want this disease! Personally, I hit the nail on the head a week ago and named it that way and felt so much better afterwards... "I don't want everyone to know that I have this because I don't want to have this!"
I reckon we (people with MS) have to give ourselves permission to say those kind of phrases a whole lot more often if and when we need to...
Even though you may not see it yourself, your strength comes through in this post.
I agree with David.
((((((((Merelyme)))))))))
(I cannot get peach ice cream to get through the computer).
you guys are so wonderful...thank you. i just reached a low point last night and...i am making my way through it. every now and then it hits me...i have this crappy disease. anyways...just...thank you for all your kind and supportive words. they help so much.
Sometimes I get so alarmed by the spaces that people find themselves in - yet all they have to do is vent.
To let it be known so they can move to another place.
Your posts are helpful and I thank you for them.
Please keep looking after yourself,
Hugh
It sounds like you need to fire that neurologist of yours pronto. Been there, done that.
I know where you are right now. If I didn't have my wife and parents to think about I'd probably be dead.
d... wish there was some way to help, but all i can do is send prayers and positive energies to help you through, day by day....
Although I'm a very late comer to this blog, from what I read so, I don't believe you to be a disappointment to anyone.
I have nothing else to offer beyond wishing you better days and peace of mind.
And a year supply of your favorite peach ice cream.
Hello, my dear friend: I haven't heard from you in a while. I am noticing a difference in my "thought patterns" as well--although mine is different. I am so much older! Coincidentally, we have a new "vision" specialist at our school. We were looking through a file together and she noticed my tremor. She asked about my "symptoms" and asked about a diagnosis. I told her no diagnosis other than undifferentiated connective tissue. She said she has MS and thought I did, too! Her sed rate is normal (just like mine) but, in her MRI, lesions were located. I haven't had an MRI--yet anyway. So for now, I go with what I have. Doing okay. Wish you were here to have a glass of wine with me! Have been thinking of you much. I know your little guy loves his mom. D
"I don't want this disease. Is that fair to say?"
YES! I wish you all the best, all good health and well-deserved serenity.
oh, sweetie .. i'm so sorry you have to put up with this kind of crap from your doctor. i'm so sorry you are struggling so much. all the best for your next MRI..
XOXOXO
I am on my 34th neurologist. Trust me, it is ok to fire them.
But really, for your sake, it would be best to just don't make any more appointments, avoid the confrontational stuff and take your films and find another doc.
Call the largest teaching hospital in your area and ask who the head of Neurology is. Then ask how many of his patient load is dedicated to MS patients. IF it is more than 50 percent, this guy may be too busy but he will take a special interest in each patient.
Another rule of thumb,,, if I have to wait more than two hours to see a doc...then he is either taking tooooooo much time with each patient or he is taking phone calls while seeing patients.
Regarding pressure to start taking "CRAB" drugs, whomever you go to, make it clear that you want them to support your decisions one way or the other. Even if you change your mind and decide to start a drug, you still need doctor supporting your choices.
Every six months I go to my neuro and yes, he brings it up and yes, I remind him that I have chosen to stay on the course that I have been on for over 25 years now.
When he stops honoring my choices, he will be fired too.
Drug companies give doc so much pressure to push their drugs, so all in all, it is not entirely the doctor's fault. But I make it clear that I am educated about my disease and I know my own body. This was my choice and I expect support from him.
I have a neuro only to follow me, be my doc of record, order MRI's when needed, provide the proper reports to various agencies in my behalf, and help me through flares with IVSM as needed.
So far, this one agrees.
I wish you luck in finding a new neuro. You might want to ask for a neuro to call you back so you can interview him/her over the phone before you make an appointment. I've done that alot and it helps weed out the ones who don't listen on the phone. How will they ever listen when you get to the office.
Take care,
Anne
My neuro sucks too, but havent found any way to find a decent one. I'm also getting the pressure to get on the meds - and resisting.
I don't want this disease either, and I don't want you to have it, or my mom. I tisn't fair, and it's ok to say it.
BTW-I think sometimes the neuro docs do it on purpose. Just to piss us off.
Judging from the power of your words in both your blogs and other writings (and I read those too), your mind seems to be ticking over coherently and in often very interesting ways. Don't let fear demean your worth, because you are invaluable at many levels. Keep on truckin', my love because so many value you.
I'm on neuro number 5 and I have only been diagnosed officially since Dec. 2005. Some of them have been awful and their office staff sucked.
Get thee to a new one when you can. I don't know how you do it with the kiddos, my hat is off to you. I find it easier for me to be single and with no kiddos that I need to worry about but that was a choice I made before I got sick.
I can only imagine how busy and crazy some days must feel and you have to keep on trying and going. I love what you write and you are so honest.
I am not a peach ice cream fan but buckets for you. Huzzah!
Hugs,
Weebles
I have felt low as you have.. especially when I am quiet. When I am quiet, I don't post much. When alot of things are on my mind, I often get distracted.
You are not alone :)
Jim
As others have said you are strong. I hope you can find a more understanding neurologist and get the help you need and deserve.
I hope the news is good...
Don't you worry about other people's expectations.
You are strong, caring, and compassionate. Your readers certainly understand (did you read these comments?). Be firm, but gentle, as you discipline yourself. Your children -- even your younger son -- probably understand more than we know. You certainly cannot say you lack support.
Good luck. You will be fine.
It's perfectly OK to write about what I call the "Suckage"...it is normal, it is life. And to pretend to be in any other state is such a disservice to the truly remarkable and deeply committed person you are.
Linda D. in Seattle
Dammit you are just too nice to have to suffer this crappy disease
It is good that you can rationalise like this though as I am sure it must help
Thinking of you and hoping your MRI and good results come through soon
I am a first time reader and on my way to a MS diagnosis. Right now all I have is a "it's likely" diagnosis. Finishing up some more tests and then I'll know for sure, hopefully without a lumbar puncture.
Thank you for being so honest in your writing. I've just started sharing my story on my blog but most times, I hold quite a bit in.
I'll be back to read more in the future.
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