Karina Jeronimides
Forum Replies Created
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When on Facebook, I love reading the FA group messages, but they also depress me. I love it when I can help someone out, but otherwise, it gets me down to read how others are so miserable and the tons of issues that we must or will have to deal with. It kills me to think that soon I will lose my independence and be forced to live in an institution where I will be forgotten.
What helps me is to stay focused on accomplishing the million of specific challenges that make up my day. Today they were: getting out of bed, transferring to the toilet without falling, washing, cleaning and dressing myself, cleaning the bathroom, the kitchen, taking care of my huge hemorrhoid, making and eating lunch, gulping down water in a refrained and strategic fashion so as not to choke or spit it out, picking up the 20 tiny pills that had dropped on the floor last night (takes forever on a power chair, and it’s both physically challenging and technologically tricky), opening the door for my PT, doing my PT, watching her go, ordering things I destroyed with my tractor-chair, getting meds into my pill packs, preparing my classes, answering work emails… it’s exhausting and yes, it sucks, but if I spend time thinking about how crappy it is to clean poop one week, and be constipated the next, or on wearing diapers, or to not be able to swallow, and many other things then I will get depressed.
To be happy, I ignore that I am sick and just do things slowly and as best I can. Be proud of your little victories;). My ex is difficult, and my daughters love me from a distance [one is in college]. I know kids have a hard time with a disability. [The girls were with me exclusively until 14/12 – the best ages.] My mom and sister are totally absent, unless I reach out. People are busy and everyone thinks their problems are worse and that you wouldn’t understand them. And you probably won’t.
So, you’ve got to remember to never take others’ behavior personally. Just don’t judge, or assume, try not to analyze things too much. And when you are sad, just take a nap or eat. Your body is probably stressed out or tired. Be good to it, love it for doing so many things that are just beyond its ability. It’s not its fault things are so hard! Above all be nice to your body, love it because nobody else will get how amazing you are for living in a world that is so harsh, so incomprehensive, so utterly absurd. You rock. Pity can only bring you down. Do not ever think that your family sees you with pity. Instead think that your family sees this amazing woman facing a plethora of adversities. You are a warrior, teaching your kids how to survive adversities. You are teaching your kids that it’s human to cry [allow that to happen], to be angry, and not to give up. A little like Sisyphus.
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I feel like my main goal is to survive and to fight for what I have:
1/ fight to keep my job. despite the hoard of non-believers, and my exhaustion.
2/ fight to keep my home, and make it accessible.
3/ fight for a higher income [or i will lose my home], and figure out how to get enough help that i can afford.
4/ keep on mustering the courage and energy to tackle health issues, chair issues, insurance issues, grant applications.
5/ filter my friends and keep the better ones only, letting go of the ones that are inconsiderate even though i may end up alone.
6/ stay away from the family members that bring me down. I’m a big idiot who is constantly taken advantage of as i worry too much about those that have so much more than i do, and I need to be less of an idiot and shrink my heart.
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It was a real hassle getting to my sister’s this year for Thanksgiving. It was particularly hard because nobody, not even my kids, seemed to realize that my abilities are different. And I had to do it on my own. Inside her house were more challenges… I cried dry tears during the dinner at seeing what they all could do and enjoy, and how much I had lost. I then got angry at myself for acting like a victim and started thinking about all the good things in that room : my 18 year old’s daughter’s superhuman strength, my 16 – year old daughter’s kindness, my brother in law’s fantastic abilities as a chef. My sister’s efforts in beautifying her house and dog for us. My nephew’s ability to laugh at the most silly things I show him. And their dog’s preference for me.
I bought a huge sign this year right after halloween, that says “thankful” and put it behind my family photos. I did it so that I would focus on all the good that I do have this holiday season. Because it’s too easy to get depressed right about now as you put so well. I also sent quite a few thank you texts and emails after our dinner.
Thinking about the people and things I am is grateful and thankful for, really helps me survive the holidays.
To all of you, hang in there, be strong, or as they say in French “courage!”
Hugs,
Karina
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Bladder issues is one of the worse symptoms of FA, along with dysarthria. It takes away one’s freedom of movement. I thought the worse thing about FA was being wheelchair bound, but it’s not at all. And the remedies out there for bladder issues just do not work for anyone who wants to live an independent life. I would love to just have a catheter [yes, i would LOVE to have a bag of pee attached to my body] so my days and activities are not so incredibly restricted – you cannot leave your house for long. But catheters are made for those that have 24 hour assistance. There is no way someone with FA can take care of catheters on their own. My friend tore her tube outside of her body more than once as she was dressing and toileting. She has had so many infections/UTIs. I work, but cannot afford to hire nurses to come to my home or place of work 3 or 4 times per day to help empty my catheter so i do not get infections. And i do not want to live in a nursing home. I have kids, a job, and friends. How do we get doctors to work on temporary fixes that lets us stay independent a while longer? it just infuriates me, that we are considered vegetables just because we use a power chair.
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Dear Katie,
I am so sorry for your loss. I will miss your columns.
I have had to face many losses, and I don’t think goodbyes are ever enough. It doesn’t matter how much you say goodbye or how often. The pain will always be there, and it will be excruciating. Your entire world will turn upside down, and at first you will be paralyzed and unable to move, just cry. But eventually, you will start reacting and searching for other ways of being, creating a new order around the void, without ever filling it. Just learning how to live without it. Missing it always. Knowing that you have no other choice but to try to find meaning and happiness without it.
Focusing on my daughter helped me. And on my students. Focusing on their concerns and helping them achieve their goals.
Katie, I am so so sorry. Lots and lots of hugs.
Karina
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Katie, I am a mom too, so I cannot imagine how difficult it must be for you. Lots of hugs. Karina
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I have FA, so it might be different for you, but the frustration you feel at things constantly collapsing on you is probably similar. My therapist says I have walking depression. I don’t agree with her. I just push through by getting things done in spite of the odds because I’m hopeful for a better tomorrow. And i know that my struggles matter. Suffering is only temporary, but getting results that last is an amazing feeling. Many days are utterly disastrous, and it’s important to sometimes just take a break – cry, watch a stupid movie [escape the real] and sleep – so you can start fresh tomorrow. Oh, and most importantly, let people be kind to you, so many of them want to help. And it will feel amazing when others do; it will give you hope. So my advice is to keep on fighting; pause to recharge, and to trust that others will help when all seems lost. And never forget that tomorrow is a new day.
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Hi Christina,
Yes, I used to until I started using an electric scooter full time. And when that happens, it’s essential to have a spare and extra battery chargers. Because stuff gets damaged and repairing them can take months. So skip the stress I underwent living alone, working and raising two kids as a single mom!!
Best,
Karina
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when i could still walk, i would say that i’m a Wheeble Wable that does not fall down” I even put two Wheebles on my wedding cake.
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when you have to describe FA with marbles in your mouth “neuromuscular” is too long of a word. your description is too long. most importantly, it’s not really worth explaining it to others as they usually respond with such pity and sorrow, that my spirit is crushed and i only think of the negatives in my life. the fact is, i’m doing lots of great things, and words that depress me make it hard to navigate through a life that is already riddled with physical issues. we should talk about the things we can do, not our limitations. labeling ourselves is just limiting, and every fa case is so different. if it’s a scientist, the conversation can be very exciting [my PT who has a doctorate thinks I’m a total bad ass], but otherwise, ugh…
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Thank you for checking in! I’m not at al used to it, and it’s very nice! I remain optimistic in my physical assessment of covid as no physical complications ensued. The logistical complications, however, multiplied. For one, my teenagers feel it’s ok to be more reckless as their mom handled it with no major physical issues. Otherwise, and unbeknownst to them, my regular help ceased [i have help bathing, cooking and cleaning], and all of my medical procedures to alleviate FA were delayed by months creating several challenges at work that have only resolved recently. My power chair also broke while I was sick, and I had to sit outside, in 40 degree weather while it got fixed. I am thus afraid of covid because of the logistical issues that domino as an effect, destroying any feeling of normalcy I once had. “Normalcy” is so hard to achieve, as you all know, when you have an illness that likes to pice things up as soon as respite is achieved. Society just cannot handle covid, even though the NYT and Fauci have called it endemic. Or is it just that the stronger ones know how to benefit from it, and the disabled, weaker part of the population, are the ones that suffer most from it, no matter how mild our case may be?
xoxo
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How to be a Latin lover – on netflix. let me know what you think My teenage girls liked it too.
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The antigen tests do not work. Both of my kids and I got false negatives when we were infectious with covid. My oldest daughter took it twice and both times it was negative. Only when my symptoms where really bad did I finalLy test positive. Otherwise, there is no way I could use those tests on my own – I have FA.
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I went to a wheelchair clinic to be evaluated by a PT who does only that. The process is very lengthy [6 months]. But my power chair is really helpful. The place that fixe my old scooter is the one that told me about the wheelchair clinic, and they helped the PT with insurance technicalities. I had never heard of a wheelchair clinic – they are all located in hospitals. And when your chair arrive, they make you practice both inside – they have a course designed with windy roads, beds, toilet and other – and outside. There is a way, as Kevin said, you just need to stay on top of it, because insurance will do anything in their power to stop the process. I had to call and create stinks.
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I have FA and two teenage daughters. The older one caught covid because I allowed her to go out with her best friend who had the virus and only realized it 3 days after they went out. It turns out that on Christmas, my 15 , 17 year old and myself had covid symptoms. All three of us had been vaccinated and two weeks before the accident, I got a booster. The father (from whom I am divorced) did not want to shelter my daughters during his half of the winter break division, and so I got to enjoy the company of my munchkins for both Christmas and New Year’s. I had not done so since the kids were 1 and 4. And the covid symptoms were very mild: stuffy nose, some coughing, some sneezing, some fatigue… Anyways, things are getting markedly better. Last year I would have been dead. And my daughters would have been devastated. Please, get vaccinated and boostered, cause it works. Our science is evolving; heck in June a treatment for FA is taking place. It might just bring a tiny improvement or just a temporary halt, but FA is an impossible illness, and very little improvement is huge. Science is moving forward, and this is not the time to lose hope. Covid is turning into a cold people 🙂
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myself! got left by husband, father, mother who is taking care of my younger brother whose FA is worse. i know i am not the only one. there are so many brave souls who fight to make it on their own. it’s scary being all alone. but it pushes you to be stronger . i was having trouble transferring to bed [fell a lot], 6-9 month ago, and i’ve done so much extra physical therapy that transfers feel more stable. i work with an accommodation and i know i’ll get fired one of these days because i am just not producing what i used to. But i am taking one day at a time for now. And thank goodness my brother has my mother.
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Hi Christina,
I’m quite worried about this actually. I took the Johnson and Johnson vaccine in April, which is the least effective, had horrible spasms for 6 weeks after, and now a booster is being given to the other ones that are apparently more effective. I go back to the classroom on August 31st, and I am nervous (more about my FA than covid), but if i have to go through those abominable 6 weeks again, I’m not sure I will get a booster. J&J never got approved by the FDA anyways, right?
Karina
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Knowing that the change will end is what helps me. And working viciously to fight it with PT/doctors/new procedures or/and adaptations that will make up for my loss of independence. But yes, change is the hardest part of this illness, and figuring out what to do to make up for it. I hope OMAV can give us all a break from it. If it doesn’t we need to keep fighting. It’s why I feel like Sisyphus. Who according to Albert Camus still managed to be happy.
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Best wishes on a swift and successful recovery. All I can say is kudos to you for helping your baby through this, and pursuing avenues that are not easy to follow. To navigate this world, a voice is such a tremendous asset.
What a bad ass!
Otherwise, what helps my mom with my brother is little acts of kindness from others. I hope you get l0ts of those.
Karina
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Getting up in the morning is my definition of bravery.
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I met one FAer who lives in Cyprus over Facebook. We have messaged quite a bit, and she’s been a fountain of help. Because of her, I’ve tried to connect with other FAers, but I have not clicked as much. I have a few disabled friends where I live, that I see once every month or two. It’s nice to commiserate, but they are all in couples, and that is really hard if you are not. They also all have parents who visit them and are present, unlike mine – this makes me want to scream. I know it’s my fault if I never focused as much on friendships because I was working full time, taking care of kids full time, and have FA [ my ex left when my kids were very small : 2&5]. It’s just really hard to find the time to care for myself, and keep up with others. But my PT, who has been working with me for almost 2 years, is really wonderful. She has a hidden disability.
Anyways, yes, I actively reach out to other disabled people, as only they seem to truly get the problems I face.
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Cuddle up with my daughters if they are home and watch a silly series on TV. [I never watch tv during the day when I have energy]
Have one of my kids read me a book
Watch or listen to the news
Listen to music
Speak to friends on the phone
Nap and cuddle with the cat.
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Hi Isabelle,
Your reply has really depressed me. I see my daughters, we also text and call. i have an aide twice per week to help me get ready for work. i just had lunch with handicapped friends. My students are adorable. And yes, this disability is tough. I have many odds against me. But i rejoice in still being able to live alone and take care of myself and in working. Help is expensive! i am trying to save to make my kitchen more accessible. I do not want my older daughter to quit college or my younger one to give up private school on my account. Besides facebook, this was my only link to the FA “family”. But after this post, I am never reading or responding to these posts again. This will be my last attempt at communicating with a none sense family that pities me, and that brings me no comfort or no actual help. Pity is the ultimate insult.
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Thank you Christina for the suggestion. Jeff, let me tell you more about my investigations.
I’ve tried myrbetric- one dose per day then two as my urologist recommended. Myrbetric really helped at first, but two doses caused blurred vision. Dr. Lynch, my neurologist, highly discouraged 2 doses of myrbetric.
My urologist then prescribed vesicare and one dose of myrbetric. But vesicare, unlike myrbetric which supposedly only targets the bladder, affects the entire nervous system. And that means that I suffered many side affects like: constipation, acid reflux, headaches, depression, sleep disturbances.
I then started taking laxatives galore and my issue was reduced. But the constipation suddenly got worse and became impossible. My primary told me to stop taking the vesicare as I sufffered from too many of its side effects. But the vesicare really worked and going to the bathroom every 30-45 minutes was not sustainable.
So I went back to my urololgist who suggested I get a botox injection. The urologist was terrified that I would retain urine and have to be cathetherized, so she injected a minimal dose of botox in my bladder. The procedure is an endoscopic surgery, and it’s done in the doctor’s office, so it’s not at all traumatizing. It’s actually quite cool as you get to see the inside of your bladder!
I had to wait 3 months to be able to stop taking the vesicare because the botox injections were so low. (But imagine needing to go to the bathroom every 30 minutes while teaching — all eyes are on you!) Oh, before the botox injection, I had to undergo a most humiliating test where my bladder was tested. Humiliating because I’m a woman and 2 male medical students had to help me on the machine [i had no underpants], and watched me as I emptied my bladder.
The botox worked, but only for 4 months, and now i am back on the vesicare, even though in September i had another botox injection.
This time around the vesicare has not only caused more issues with constipation but also really painful bladder spasms.
I will bring up Christina’s medication with my urologist. But I think I’m just too old, and incredibly sensitive to medication. Do go see a urologist and get botox earlier on than i did, as it will work better. Taking drugs for too long is just not great for anyone.
Best of luck.