Looking outside my window today, I might think that winter is coming (GoT daydreamer here!). The sky is gloomy, the air is full of cold humidity, but I know it. It’s summer. A grey day of rain can’t fool my MS. It knows best.
I’ve never been so much of a summer fan. Not even in my teenage years. All the “let’s go to the beach and get tanned” had no effect on me, as I always prefered the cool mountain breeze through my hair. There is so much more to do and explore, and the scenery tops it all! Being on a moutain cliff and feeling all that space around, gives me a sense of freedom like I’ve never felt anywhere else.
Eight days from now I’ll celebrate the first year since I met my MS. Of course it had to rear its head during the most wonderful time of the year for me: blazing hot summer! The two loves of my life came together. Yay! MS made me dislike summer so much more. Especially when I have to self-inject.
Guess what? Needles aren’t my personal favorites either. But I made friends with them. After more than 100 days of injecting I can finally say that we know eachothers highs and lows. It’s my adrenaline shot and I’m beginning to feel it working. I don’t mind the sting so much anymore, as I gotten used to it. I breathe and I know it will pass… And then I go take a second morning shower because the 34 degrees outside soaked my t-shirt! And it’s not even 11 a.m.!
So, living at Winterfell sounds like a very good option! Seriously now, I could stand frost bites better than dripping foreheads all day long. That’s why my favorite season has always been winter. It’s where me and my MS find common ground. Plus it makes a good match for my daily needles. They are both cold as ice. Hence the picture in this post.
Looking back at my window, winter has come at least a little bit. It’s raining and the wind is slightly moving the tree leaves. And so my MS is pleased. As am I. We are friends again.
Sincerely,
Alexandra
P.S. Question: How are you handling the summer heat? Does that impact your MS in any way? Share your answers on Facebook, Twitter or in a comment down below. Thank you for visiting!
(Image Credits: Thank you #Soli Art Photography! You made my story come alive. Beautiful image!)
Oh, dear, please let me know how in the sweet name of HELL you got on the treatment, because there have been summers since I got diagnosed, and I do know my EDSS (lowest possible) but still they couldn't find me a fucking place on the list. So, please, who the fuck did you bribe to get ahead of others in Bucharest? Please, my life depends on this information.
RăspundețiȘtergereHello, Anonimous user! I am trully sorry that you are still waiting for the treatment! I would not wish that to anyone who is fighting MS. There's a lot of anger in your words and I understand why. The medical system in our country is flawed. And the Government is selfish enough to simply not care. Unfortunatelly, bribing is a national sport especially in hospitals, but it isn't my case. Given the waiting list, I too was surprised that I got a place. I was once offered a place in a clinical study with one of the interferons, but I declined. Copaxone or nothing, thank you! And so they told me that I had to wait untill the following year, apply for treatment and see if I get approved. My EDSS is also low, but the disease is active. So maybe that's why. Tell me about your story. I feel that you have a lot on your chest. Hope I can help in some way. All the best wishes!
ȘtergereI don't buy that! Romania doesn't work that way. You don't get the treatment you wish for, you get what the doctor recommended, given that he/she has mare experience than you. So you don't dictate in the hospital. Second, copax is more expensive than most interferons (you see, I really did my homework). So what doctor takes orders from a literature "artist", and why? Why would you believe I don't have an active MS? Just because I don't princess around, letting every untreated MSer know I got to the treatment before them? That's rude and mean and pointless. What, in your perfect world, you had no idea there are people that have been waiting for a (any) DMT for years? Like, don't you read the news and the REAL PROBLEMS of MSers? Are those second category citizens, unimportant for your theme, since obviously you neglect that political truth. Who knows, maybe your folks took care of your treatment with politics. Still wanna know 'bout my treatment?
ȘtergereIs Romania so bitter that even MSers turn against MSers? I am not the enemy here! Believe it or not, this is what happened, Anonimous. What were the point in me bragging around PUBLICLY with the treatment I have been given when others can't have it (What made you think that I am not informed?)? Stop and think that maybe I am as revolted as you about how things are in Romania? This blog did not happen because I wanted to share my "princes world" and flick the proverbial carrot in front of other MSers. That's just cruel! MS is cruel. I am not, Anonimous. Remember that I am in the same boat as you are, treatment or no treatment. It is nothing I wished one morning "oh! Let me have MS, take a treatment others don't have access to, and inject myself every day, not knowing if it will have an effect on my progression or not". I want to change things. To make it better for the people who need it most. MSers in my country! I started this blog to raise awareness for our cause, and let people know that we need help. If message was all doom and gloom about MS patients situation from the first post, I would have not changed a thing. I want to do it differently. I can not have an incisive article with little blog engegement. Who would listen? I want to be heard! We need therapies, we need rehabilitation, we need access to treatment and most of all, we need a cure for MS. If I were to be some kinds of "princess", dear Anonimous, I would surely be a "warrior" one, as cheesy as it may sound to you. Are you willing to stand up and fight with me or are you just gonna stay there and make angry comments on a fellow MSer? P.S. I can see why from your point of view you are angry at all those people who get ahead in this life challenge. But trust me, if I could choose how things were, I would erase MS from my personal history and right now. And from yours too. I am THAT optimistic and THAT MUCH willing to FIGHT BACK against MS and this Romanian status-quo. But fight proactively and not become a victim, not over-exagerrate the condition with negative terms like "despair", "sufferers" and "sick people". Personally, I think MSers are true heroes. It takes courage and gutts to go through life withn unpredictable illness. And yes, I still want to know your story, Anonimous!
ȘtergereStatistics say we are not in the same boat: any DMT will delay the onset of disability for the treated patient, as no DMT will do nothing good for untreated ones. In these two months I have NOT ONCE read about you delivering a message for the government, not once have you complained about the horrible system. Oh, wait, you haven't been discriminated. You didn't have to wait! You actually got the luxury (God knows by what system of influence) to pretend a certain treatment. How do you wish to change the system that repaid you for your "obedience" with the more expensive treatment than interferons?
ȘtergereHow are you planning on making it better for the ones that cannot leverage a military system in the goverment? How do you want to make a change (you sound so Obama right now, but you benefit form being Putinish)?
What do you want to raise awareness about? Yoga?
Who do you think wants to read about happy princesses going paleo and benefiting from being happy? WTF? I have a fucking job that requires 12 hours a day of my attention. I don't have time to have relapses and complain about being unhappy about my free expensive DMT I got for no reason!!! You are ungrateful!
I didn't ask for MS either, but I certainly cannot ask for a treatment in fucking crappy Romania! I begged to get on any DMT available, but all I got was shrugs and a fucking: "this is a system, and there are other patients on the waiting list from like 5 years ago!". So sorry I cannot be OPTIMISTIC, but ROMANIA IS PLANNING ON COMMITTING HOMICIDE ON PATIENTS.
How do you plan on getting the rest of us on that fucking DMT list?
Because all you have doing has been complaining on needle bruises! Thanks, but meanwhile we have been getting relapses and disability, but how can the princess of you get that?
How about you get down from that ivory tower of yours and meet some real fucked-by-the-system-that-gave-you-DMTs MSers? Those that were told to go fuck themselves by the Health Ministry of Romania in 2014, when they begged for treatment? You know, those you pretend you represent? Those that have been already condemned?
And who the fuck do you represent? Romanian MSers or World MSers? Like, don't be a ***** - talk Romanian, it's like your first language. I guarantee the Germans don't need your advice - they get early on DMTs.
Wanna know my story? Who knows? Maybe you got my DMT spot by government influences (those are the only ones that work for MS), and are such a coward to admit that right now. So thanks for "representing" me! Do you have any idea about the name of the Ministry of Health?
Want to be proactive? Do something!
While you don't really give a fuck, happy needling while others paralyze 'cause of your lack of action! You are SO NOT PRO-ACTIVE!!!
PS: I am fighting, and I've been to the government and I was wished a slow and painful death (personal dedication for trying to raise awareness)! So don't tell me I am not fighting! Don't you dare! You are the anon here, you are just a little brat! You have no idea about all this because you don't know MSers in Romania! You don't know our trouble in getting on DMT!
MSers are no heroes, just normal people trying to get on a normal life, without others fuckers interfering in their shit.
And then again, why does your anger and frustration rain down on me? If a person gets treatment and you don't, that gives you permission to sweep the floor with it and pour all the negative energy on top? First of all, you don't know anything about me or my struggles. Second, you want me to act on your terms and your rhythm. I did not write any article on real MSers? Is that really the blame you bring me? Am I guilty for not knowing about you, especially, while you were aware of my blog for the last few months? You were lurking in the shadows for what? For having someone to backlash at? What happens if I backlash at you? For accusing me of being superficial. For accusing me that I don't care. Why the f..k do you think I opened this blog for? Bragging? Laughing in your face and of other MSers who are facing dissability? What kind of person are you? Other countries have communities that stick together and encourage each and every voice to raise awareness ABOUT THE DISEASE, ANONYMOUS, ABOUT THE DISEASE that made you so scared and angry. And what do we do (I only give us two as example, allow me to be short-sighted for the sake of demonstration)? We backlash at one another. You, the MORE EXPERIENCED MS.ER, instead of helping me cope with the disease, at least morally, what do you do? You throw anger at me. You pour all your humiliations at me. How can I want to meet other MS'ers like you if you behave in such a way that makes me hate this country even more? How is a F...ED UP SYSTEM my fault? You do nothing but calomniate me for... what? Having a blog for ONLY 3-4 MONTHS andnot knowing all that is wrong in the MS community? Having received a treatment for a disease I did not ask for? What? DMT's only SLOW THE PROGRESSION, you know that. The system is the enemy here, not me. From your first comment, I answered you and showed interest. The Goverment pissed on you. I care so much about the unjustice in this country and you don't know nothing about my struggles. Why? Because you are to caught in your bitterness and anger and backlash at a person who just wants to help you. As much as it's possible. Fror the last 2-3 months I wrote in ROmanian, and who answered me? Who showed any interest or even your kind of rage? No one!! Not even one! Just a few encouragements on. Facebook from people who felt encouraged that someone even speaks out loud about MS, and tries to curate useful information to make their lives a little more manageable, if ever so slightly. I don't want to "represent you", i wanted to help you tell, yell, shout to the whole world the injustice you and all patients are going through in Romania due to lack of money and common sense. But I see that I tried in vane. I am trully sorry for what you are going through, and for the idiots you had to face on your journey. I wish you the best of luck in the future battles against the system. It seems like you have your battles and I have mine. You perceive reality as being tragic and "shoot to kill" any form of public communication that does not conform to your ideas. I perceive reality as being optimistic and taking care of one's life, with or without DMD's. All that counts is being able to live a good life and to lift your head again, even if you fall. I have fallen many times, Anonymous, but you don't see me bitching about it, do you? We all know the tragic part of living with an incurable and debilitating disease, but I surely won't live my life in bitterness and constantly accusing other people of things I have no evidence that they had or had not done. Look for another target for your anger, Anonymous. I hope that sometime along the way I will be able to do something for you. Even if I don't know who you are. Good luck at work and on every other thing you may have on your to do list. I wish you all the best and a lighter heart.
RăspundețiȘtergereBecause the more people like you get treatment ahead of others, the more others are getting EDSS (ya know, more then 6 and no doctor will give you DMT). That is why you just stole some other perfectly eligible young the posibility of getting "better". How do you think I treat thieves?
RăspundețiȘtergereNo, princess, I want you to ACTUALLY DO SOMETHING, not complain about getting early DMT by means known only by you and then cry about hematomas. You want to do something? Do! Go to the government and protest for the ones you got in front of.
I honestly don't care about you backlashing. I can't see you having a reason for that, butterfly. In your perfect sparkly world, you got what you wanted (no dr will take orders from a normal citizen and put them on Copaxone just because).
How do you plan to raise awareness? All you have been doing in the last two months separated you from RoMS. Who do you think you are talking to? Germany? =)) Please, those ones get treatment the following day after diagnosis PwMS.
I don't care about you coping with a slow progressive disease. I don't have time for your "problems". You got ahead of others. Right now, you should be working your butt off to get the other 2000 of us on that list. (I bet you had no idea how many patients are waiting - some since 2010, like 5 years ago).
See, dear, you should like study more and blab less. Have you ever had real life problems, you would have known that you are not entitled to complain in blogs. But you don't care, because all your life you smoked and felt good about you taking wrong decisions. (Most of MSers don't smoke because it's bad for the brain & organs).
Are you not thinking clear? Non-treated MSers get fired in Romania! Most of RoMSers don't get English, except for kitties, kisses, love and sex and NY. But the educational system is not my priority. Health is.
Others are building pretty interesting blogs without needing validation from others. Because it's for patients, not for their own egos.
No, I have the battles for me&patients, because I work to get even more medicine available on the programme, and you princess around blinking with your eyelashes and expecting people to fall on their butts when they read you. Sorry, life isn't flying ponies pooping rainbows.
That's what I thought: you feel like you should do something about RoMS, but then again, you take a break from that. And then ask why others don't join you in doing nothing. Cute!
Want me to keep you informed about the shit government does and how it plans in cutting down the MS programme?
So, yeah, you know, you closed the window because you don't like what real people in the real cursed world are saying. Reality is really not about sparkles, is it?
PS: I would never sign with my real name, because the employer might fire me. You don't talk much about discrimination, but in the meetings, people say how others behave to them. Salaries go down after diagnosis.