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Fibro won again-reaching out
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kasie75 posted:
Hi to everyone and hope everyone is doing ok. I need to vent and I know everyone has their own problems but I do not know who else to talk to that understands so here it goes.
As some of you know I have been going back to school in hopes of getting my nursing degree. I was working full time and going back to school and was DX with fibro, eight months later I could no longer work full time. I have been struggling with my school work due to pain, fatigue and brain fog. I am now in a CNA course which this week was my last week and I just had to finish clincials which was tues-friday from 7am-3. Tues was the first day and I woke up in tons of pain and totally fatigued and I could not make it, same thing today. I have basically slept all day tues, tues night and all day today till around 2pm. Since I missed two days, I have to wait and finish clinic next semester if they have any room.
I am thinking of putting off school and trying to focus on ways to control my fibro better. I have no insurance and I am hardly working, I help out at my sisters restaurant a couple days a week which is really hard on me. It is hard to find ways to help your fibro when you have no money. Christmas is coming up and I am worried about having money to get presents for my children, worried about working and worried about finishing by degree. I hate to put my degree on hold but if I can't even make it to class I don't really know what else to do. Life is just so stressful and no one seems to understand. I tried to tell this to my sister and her only response was well I did it and had worked and had kids and had kids -but did she have fibro NO. I love when my sister and others just tell me to push through it and get up and keep moving and just make yourself. Do people really think we just make this stuff up because we love being stuck in our homes and not doing things. I am so sick of rude people, if you haven't been in my shoes then don't tell me what I need to do.
Thanks for listening just having a bad day!!!
Kasie
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booch007 responded:
Good morning Kasie,

Oh, lean in to the computer screen.........my arms are coming through the screen to give you a hug. This IS the toughest thng to battle. It is everyday and it is unseen to the world except us who deal with it.

I have to say, I am high functioning and in tune and i couldn't do those things. I had tried classes and it was intolerable to sit in a seat for class. You definitley have to get a plan for better management in order to move forward. If you can't do class, you can't get a job and work........right?

Make sure you looked in the "Toolbox" to the right in resources, for non medical ideas of things to do. BUT they are added to a medical regime to be better.

If you are not working and have children and are on your own, are you on relief (medicare/medicaid)? Do you fit the profile for need? Maybe going to your town's social security(?) dept for help. Even the office of the aging and anything in the phone book related to resources.

I wish I had more Social Work knowledge, these are the people that know all the specs for assistance and care availability.
When I first moved to my town I called all the numbers to find childcare so i could work, I didn't know anyone and I just spoke to everyone in the county. Some laughed at me, some had ideas to help me. "I USED THEM FOR THEIR KNOWLEDGE.

I was trained in the Bronx and had resources in the Bronx, well not in the world I was in now. They helped me in the end.

So, I would call them and say you need assistance, that illness has come (don't say FM) say you have a muscle disease like MS and need help. I remember too in the past the fmily recommended going to Psychiatry for the depression we develop and then they got the person into the system for help.

It is an idea. Not a non truth......we all have depression at some point due to the frustration and pain we deal with.

Also is there a clinic at the hospital that gives care to those with low income? Prorated to income? Try that. Than resource the meds by calling the companies that make them for samples and assistance. There is a company and phone number I have in the office for assistance for meds. I will have to get back to you, as it is in the office computer and not here on this desk. I use it for Medicare only patients to help them with meds. It is national.

You have to work on this first, get better management and then you can move forward for "becoming something". You can do it, but you will absolutely need more help.

I couldn't carry the text books, I used a luggage thing to pull them. You will need to be inventive to get past triggering the flares you create (and that is what I think happened to you) (a crash of sorts).

OK, hope I helped with a bit of a plan.

So many times I say "The spirit is willing but the flesh is WEAK" It is a perfect saying for us.

OK, Keep us in the loop. Nancy B
 
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meg_k replied to booch007's response:
Kasie,

We all have been there and get what you are going through. I send soft, understanding hugs your way! Hang in there. Things won't always be as hard as they are today.

It's rare for our loved ones to understand initially, until they finally get it that you are sick in addition to all your other life challenges (and some never do get it, sadly). My DH used to tell me to just "push through it" until he finally understood I was physically incapable of it. But it took a long time for him to grow in his understanding.

My advice is to go to healthcare.gov and get on health care coverage you can afford. If you tell me what state you live in, I can help you further with other needs/gifts for kids ,food, etc.

If you can afford it financially, try to take time off to get your disease under control. The stress and overwork you are involved in makes Fibro worse. If you can't stop working, try to focus on things that help you meet your immediate needs and that of your children ONLY and do nothing else until you can start feeling better consistently. Put everything you don't NEED to do on hold for now. Your health has to be the priority, not only for you but for yoru family. Everythign else depends on you starting to feel better.

If you know your vitamin D level is below 50-60, start taking vit D supplements immediately. (I am not a doctor, so this is not valid medical advice! But I still advise it!) If you don't know your vit d level, get it checked, even if you have to pay cash for blood work. Raising my vit D has had the single biggest impact on my improvement of anything I've done, and the supplements are not extremely expensive.

It's still entirely possible you can accomplish your career goals down the road, but not until you've figured out what your maximum improvement levle will be on Fibro.

Take care. We are there for you!!!

Meg
 
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franr responded:
Dear Kasie
Please know that at one time or another everyone here has been in your shoes .As Meg as stated go to your states health care system and try to applied for public health care .If you have no income you should qualify .As far as nursing goes I am a nurse with a BSN and I kept going back to school. LPN to RN to BSN. It took me 10 years to finish my BSN. So take your time and take care of your health. Sitting in classes can be very hard especially when you are in pain. The clinical practice is very challenging because you need to take on an assignment. And If you don't feel well your performance will suffer. You are still young take your time. Take all the prerequites that is needed. If you really want to be a nurse you will accomplish it .Good Luck...Hugs Fran
 
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kasie75 replied to booch007's response:
Thanks so much Nancy, your a big help. I will make some phone calls and see what assistance might be available. Thanks for all the resources you are such a big help to me in so many ways. Thanks for my hug also! I needed it!!
Kasie
 
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kasie75 replied to meg_k's response:
Thanks Meg,

This was very helpful, thanks I needed the reassurance I was doing the right thing, Now I think I am. I am going to put school on hold until I get control of my symptoms. I am in Kansas and I get food assistance but I always thought only children get free healthcare, maybe I am wrong. I never thought I would need food assistance or would have to ask for help, its embarrassing but if I could get help with some medical then I could actually see the doctor. If you know anything about insurance you think I could get or how I would go about it, I would so appreciate it. It hard to get all of this figured out when you feel like crap and don't feel like doing anything.
Thanks so much for all your help!!
Kasie
 
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kasie75 replied to franr's response:
Thanks Fran I appreciate your support. I have everything out of the way expect Micro Biology and Comp 2 but I cant take this classes like I was planning until I get a better control of my symptoms. I felt bad about taking some time off school but I also want to do my best and I am not at my best right now.
Thanks again.
Kasie
 
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dollbug replied to kasie75's response:
Kasie, I think it is great that you are even able to go to school and take your courses. I just wanted to say this that anything and everything with dealing with the wrath of the dragon, aka FM, takes a process...which does take time and effort...You have to figure out what to take and what to do to learn to *dance with the dragon, instead of draggin the dragon....(as our dear Nana B states)....I think that with time, things will indeed get better for you....but I do not think that you will ever be completely like your old self again. Nana B is also a nurse and she faces the wrath of the dragon each and every day also.

Good luck to all of the FMers who can still function well enough to hold down a job and dance with this dragon every day. I hope things will continue to get better for all of you.

Certainly learning how to pace, pace and pace even more can be a very good start, IF this is an option.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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kasie75 replied to dollbug's response:
Its amazing how this disorder drags you down, My husband use to always say, honey can you just sit down for five minutes. I used to not even be able to watch a movie, I was either doing something for the kids, cleaning, laundry, always do something. Now its more like if I make it out of bed today what will I be able to accomplish.
Kasie
 
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annette030 responded:
Do you think you could work as a nurse if you finished school? I have fibromyalgia and I cannot, and haven't been able to for the last fifteen years. I was a bedside nurse, you may be able to do something else in nursing. I could not. You must be realistic about whatever you decide to do with the rest of your life.

Take care, Annette
 
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bette_kaffitz responded:
Kasie,

I hope you have found some afordable ways to get the medical care you need. This should be your first priority.

Your kids know your situation. They will be happy with any little thing you can manage for them. Yes, there will be kids in school with tales about fabulous stuff under the tree. That is not what your children need. They need to know that you love them, that you always will. They need you to read to them. They need you to praise them for the little things they do to help around the house. They need you to always be their rock.

To be this rock, start with the toolbox and tips to your right here. A warm shower or bath doesn't cost a lot. Those throw in the microwave heat packs are cheap, too. Buy your vitamins and supplements when they are 2 for 1. Better yet, get your doc to write out a prescription and possibly get them free if you are on Medicaid.

Once you are in control of your FM--not pain free, just in control--you can decide on any courses you may want to take. In the meantime, think long and hard about the physical resources you have. Nursing at any level is hard on your body. It may not be for you--or your fibro. But then, again, it may be. I started college at 37. Many of my fellow students were in the nursing program. It constantly amazes me how diverse their current jobs are. One is a masters level sociologist. One is an M.D. One is a nurse practicioner in an OB/GYN clinic. One works for a drug company helping assemble all the clinical data needed to get a drug approved. One works with her lawyer husband helping people like us get out SSDI claims through. Nursing is a gateway career. If you can get your body to cooperate, the sky is your limit.

But first, you must be in control of your personal, ever-changing dragon.

Bette


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