Hi, I thought I posted this, but can't find it anywhere and suspect I took so long to write it--my first post--that I timed out and it disappeared instead:
Hi,
I am in the process of finding out how bad it is, treatment options, etc. This is my 3rd medical shock in 3 years, and I am almost out of juice to cope.
Over the last 3 years I have learned I have:
... a genetic problem called "Ehlers-Danlos Syndrome" that disables many people but is fairly mild in me, plus
[B]...CVID, an immunodeficiency that requires monthly IV infusions and disables some people but is fairly mild in me (tho' treatment is the same, in time and cost and side effects), and I already had
...Interstitial Cystitis, a painful incurable bladder disease that disables some people, and has greatly damaged my quality of life since age 11, but is relatively mild compared to those for whom it is fully disabling.
Now the MS is fairly mild, but it appears I have had it for years (which explains how I can be middle-aged and have the --I hope!--RRMS vs PPMS or SPMS--don't know yet) and I am entering a phase of worse and more frequent episodes...
Meanwhile I was just recovering financially from disastrous medical bills from 6 years back (surgery gone wrong) that almost cost me my house, and a whole lot more...dropped out of grad school, etc. Just this month I was reaching a point where I could stop holding my breath for the first time in 8 years...stop just surviving and actually LIVE again.
I saved my house from foreclosure, just bought a newer car (my old being 21 years old!), gone back to school, and still work FT. It's hard, but I thought with careful pacing and prioritizing, I could do it. I hate my current 8-year job, and have gone back to school in a field I'm not crazy about, so that I can get a grad degree in it, and escape my current role...I have just come to the end--2 classes left--of the under-grad 2nd degree (which I didn't want, but had to have to prepare for grad school). In fact, I've been doing my grad applications for a month now!
I am exhausted, terrified I'll spend all the money and time (3 more years), and get my hopes up for school changing my life, and then have it all go South yet again, with it almost too late to try again in my early 50's(!)...I am both wanting some shorter work shifts (not officially allowed), and ADA support from work, but scared to tell them lest they pounce on anything resembling "cognitive decline".
They have not been nice about the IC, and my IFMLA hours-per-year allotment is getting low; it will be up to them to keep me on or not if I max out, so demanding or even begging for allowances of any kind is very risky.
I know I will not be okay with being grateful I can still work, etc., if it means I have to keep this health-damaging, soul-crushing, stullifyingly boring, but still very demanding, detail-oriented, high-pressure and stressful job, nor be able to recover financially from the burden of student loans if I can't earn more with a higher degree by finishing grad school...nor even get my mortgage out from "underwater (negative equity)" if I have to stop school now and live on my current income--or less, if my hours decrease.
I've just been reassigned to a work team with a supervisor who prides herself on catching errors other supervisors miss, and in axing those others would be too soft-hearted to let go, by catching every error they make, and pressuring them to leave or "paper-trailing" them out the door. And while I have been praised for clinical judgment and client rapport, productivity is job #1 there, and mine is mediocre.
I have family who care, two sisters in a nearby state, but one is disabled for 20 years now from an MS-like condition. It seems insensitive to whine about my symptoms and situation in the light of that; although she is fully mobile, etc. and just can't hold a job, she suffers poverty and pain for it, and has lost part of her sight.
The other is great (to my undying gratitude) when you're sobbing the day/hour you first learn the diagnosis, as I did last week. But she is illness-phobic since childhood, due to a traumatic experience with our mother's health. So she disappears after that first day or 2, avoiding even routine contact, or what could be called "follow-up check-ins" to see if you're still okay, or learn your next step in treatment/life-planning.
(She doesn't do it on purpose, and I know she loves me; but her health is generally pretty good, though not great, and she has always felt guilty about this. She has also, in the past, usually been very uneasy, and even put off by, or scornful of, others' medical issues, especially if they seem needy, whiny, or to be using them as "excuses" not to meet life's demands.
...And when she can bear to listen, she is often unilaterally, sometimes unrealistically, hearty in her "positive outlook" comments and prognoses, to the point that you realize she's not going to let you entertain the idea you won't be "JUST FINE" and "AROUND FOREVER"--at least not where she can bear to hear.
You might hear, too, you might be glad that you have some aspects of the disease because of "side benefits". An example would be losing your sense of smell and never having to experience nasty stinky smells ever again. Never mind that you can't smell flowers, clean clothes, a baby's skin, or woodsmoke ever again, either. She tries to be no-nonsense practical, plus light-hearted and funny, but sometimes it's just...not. Not the right time, not realistic, and for sure not funny.
...And that's really hard, because in other areas of life, she's the one I go to for level-headed, humorous and practical advice and shared opinions about other things...and I offer her the same in return, but am able to deal with illness and fears others, including she, might have--as she cannot.)
I need to hear from other MID-LIFE NURSES, or medical people, especially, but all of you who are hoping to keep working, can't imagine --yet--NOT doing so, but don't have support, nor financial help. After a decade of agonizing 55-60 hours/week over-time, work abuse, financial shame and terror, etc., etc., all of which probably caused both the CVID and MS, I am finally getting past it, and very scared it's all coming right back again.
I was just re-blossoming, you could say, albeit much older, and sometimes looking and feeling it, from all these medical disasters. I was just cautiously enjoying the renewal of just HAVING the luxury of financial and occupational hopes and dreams, and am terrified they--I--will crash and burn AGAIN....I'm so alone, as there is no one I can tell yet in my private life, nor at work.
I have some friends, but due to my dreadful schedule, and having been new in the city when it all crashed, I have no close friends here (yet), nor any casual ones whom I can trust not to blab. Maybe even avoid me, or who knows what. I've been dating a little, for the first time in years, but it's too soon for sharing.
I had just been planning to get back out there, once these last 2 under-grad courses are finished, and make some REAL friends, with shared interests, volunteer, write more poetry, etc. I still will, but...
I have a counselor who---ironic laugh--was hired to help me manage the CVID at work and without letting it ruin my dreams. (It seems so secondary and minor now, though it is itself a risk factor for MS.) I live in mid-east Missouri and welcome any support group info.
Hi,
I am in the process of finding out how bad it is, treatment options, etc. This is my 3rd medical shock in 3 years, and I am almost out of juice to cope.
Over the last 3 years I have learned I have:
... a genetic problem called "Ehlers-Danlos Syndrome" that disables many people but is fairly mild in me, plus
[B]...CVID, an immunodeficiency that requires monthly IV infusions and disables some people but is fairly mild in me (tho' treatment is the same, in time and cost and side effects), and I already had
...Interstitial Cystitis, a painful incurable bladder disease that disables some people, and has greatly damaged my quality of life since age 11, but is relatively mild compared to those for whom it is fully disabling.
Now the MS is fairly mild, but it appears I have had it for years (which explains how I can be middle-aged and have the --I hope!--RRMS vs PPMS or SPMS--don't know yet) and I am entering a phase of worse and more frequent episodes...
Meanwhile I was just recovering financially from disastrous medical bills from 6 years back (surgery gone wrong) that almost cost me my house, and a whole lot more...dropped out of grad school, etc. Just this month I was reaching a point where I could stop holding my breath for the first time in 8 years...stop just surviving and actually LIVE again.
I saved my house from foreclosure, just bought a newer car (my old being 21 years old!), gone back to school, and still work FT. It's hard, but I thought with careful pacing and prioritizing, I could do it. I hate my current 8-year job, and have gone back to school in a field I'm not crazy about, so that I can get a grad degree in it, and escape my current role...I have just come to the end--2 classes left--of the under-grad 2nd degree (which I didn't want, but had to have to prepare for grad school). In fact, I've been doing my grad applications for a month now!
I am exhausted, terrified I'll spend all the money and time (3 more years), and get my hopes up for school changing my life, and then have it all go South yet again, with it almost too late to try again in my early 50's(!)...I am both wanting some shorter work shifts (not officially allowed), and ADA support from work, but scared to tell them lest they pounce on anything resembling "cognitive decline".
They have not been nice about the IC, and my IFMLA hours-per-year allotment is getting low; it will be up to them to keep me on or not if I max out, so demanding or even begging for allowances of any kind is very risky.
I know I will not be okay with being grateful I can still work, etc., if it means I have to keep this health-damaging, soul-crushing, stullifyingly boring, but still very demanding, detail-oriented, high-pressure and stressful job, nor be able to recover financially from the burden of student loans if I can't earn more with a higher degree by finishing grad school...nor even get my mortgage out from "underwater (negative equity)" if I have to stop school now and live on my current income--or less, if my hours decrease.
I've just been reassigned to a work team with a supervisor who prides herself on catching errors other supervisors miss, and in axing those others would be too soft-hearted to let go, by catching every error they make, and pressuring them to leave or "paper-trailing" them out the door. And while I have been praised for clinical judgment and client rapport, productivity is job #1 there, and mine is mediocre.
I have family who care, two sisters in a nearby state, but one is disabled for 20 years now from an MS-like condition. It seems insensitive to whine about my symptoms and situation in the light of that; although she is fully mobile, etc. and just can't hold a job, she suffers poverty and pain for it, and has lost part of her sight.
The other is great (to my undying gratitude) when you're sobbing the day/hour you first learn the diagnosis, as I did last week. But she is illness-phobic since childhood, due to a traumatic experience with our mother's health. So she disappears after that first day or 2, avoiding even routine contact, or what could be called "follow-up check-ins" to see if you're still okay, or learn your next step in treatment/life-planning.
(She doesn't do it on purpose, and I know she loves me; but her health is generally pretty good, though not great, and she has always felt guilty about this. She has also, in the past, usually been very uneasy, and even put off by, or scornful of, others' medical issues, especially if they seem needy, whiny, or to be using them as "excuses" not to meet life's demands.
...And when she can bear to listen, she is often unilaterally, sometimes unrealistically, hearty in her "positive outlook" comments and prognoses, to the point that you realize she's not going to let you entertain the idea you won't be "JUST FINE" and "AROUND FOREVER"--at least not where she can bear to hear.
You might hear, too, you might be glad that you have some aspects of the disease because of "side benefits". An example would be losing your sense of smell and never having to experience nasty stinky smells ever again. Never mind that you can't smell flowers, clean clothes, a baby's skin, or woodsmoke ever again, either. She tries to be no-nonsense practical, plus light-hearted and funny, but sometimes it's just...not. Not the right time, not realistic, and for sure not funny.
...And that's really hard, because in other areas of life, she's the one I go to for level-headed, humorous and practical advice and shared opinions about other things...and I offer her the same in return, but am able to deal with illness and fears others, including she, might have--as she cannot.)
I need to hear from other MID-LIFE NURSES, or medical people, especially, but all of you who are hoping to keep working, can't imagine --yet--NOT doing so, but don't have support, nor financial help. After a decade of agonizing 55-60 hours/week over-time, work abuse, financial shame and terror, etc., etc., all of which probably caused both the CVID and MS, I am finally getting past it, and very scared it's all coming right back again.
I was just re-blossoming, you could say, albeit much older, and sometimes looking and feeling it, from all these medical disasters. I was just cautiously enjoying the renewal of just HAVING the luxury of financial and occupational hopes and dreams, and am terrified they--I--will crash and burn AGAIN....I'm so alone, as there is no one I can tell yet in my private life, nor at work.
I have some friends, but due to my dreadful schedule, and having been new in the city when it all crashed, I have no close friends here (yet), nor any casual ones whom I can trust not to blab. Maybe even avoid me, or who knows what. I've been dating a little, for the first time in years, but it's too soon for sharing.
I had just been planning to get back out there, once these last 2 under-grad courses are finished, and make some REAL friends, with shared interests, volunteer, write more poetry, etc. I still will, but...
I have a counselor who---ironic laugh--was hired to help me manage the CVID at work and without letting it ruin my dreams. (It seems so secondary and minor now, though it is itself a risk factor for MS.) I live in mid-east Missouri and welcome any support group info.
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