I am entering day five of excuriating pain. On top of Fibro, MS, and Trigeminal Neuralgia, my L4, L5, and S1 discs are all herniated. After almost three years with no issues with this, I am having full pressure on my nerve roots.
Through this pain, I am having to care for my parents, by getting them to their appointments, and other miscellaneous things, work (I am a stylist), and care for my ten year old daughter (who has been caring for me more).
I am dreading today. I have to get my Dad to physical therapy. I have no idea how I will do so (after a massive stroke, he is paralyzed on his left side). And, a few other errands that cannot be put off any longer.
I cannot get in to my doc unt… Wednesday. My pain meds do not seem to help any. I have Norco, Percocet, Baclofen, Nuerontin, and Buspar for anxiety. As I am sure you can see, having some support through the next few days can help me immensly. Thank you all in advance!
Hang in there, You can get through this. I can't imagine your pain because I don.t have the other symptons that you have. Some how we do manage to do whats needed. Ill keep you in my prayers, Gentle hugs coming your way, Robin
Hi I understand it is hard for you but try and stay strong. Cant you ask for a nurse or community nurse to help you out or other family members.I got asked if I wanted a nurse but I am lucky with a amazing family, so you should get help.I really hope you are OK, big hugs Vickie xxxxxxx
I'm so sorry - it sounds like you have more than your share on your plate before your own medical issues. Being a care giver is a huge stress and stress is the last thing you need. Have you reached out to other family/friends to see if anyone can help out? Sometimes it's hard to ask for help but you need to ask if you haven't already. Even if they can help by shopping for you, preparing meals, or taking care of your daughter to give you a break - ask if you can. Take care.
Oh my Blue Eyed Girl! When I was first diagnosed my doctor told me my full time job from now on was to take care of myself. Doesn’t sound like you have much time to do that! He also told me to ride the pain like a wave, knowing it would eventually resind. I wonder if there are other resources to care for your parents? I know they probably only want you so you feel you have to do everything they need, am I right? In my community there is an Office for Aging that coordinates resources such as transportation for seniors. Is there any possibility that your Dad could get home PT? I think so many of us with Fibromyalgia are wonderful caregiving people like you. But now we have to say “No” and that is not only hard for us but hard for those who depend on us to look elsewhere for support. Sending you love and prayers, Peg
I have no other options for my parents at the moment. I have gone to a pastor at my church and unloaded my need for help. His answer was to go to my older brother for help. Well yhat was no help. Its a huge disappointment.
All other things we are waiting in process for. Weve had in home therapy which was a joke. Thank you all for the support.
Please understand I have gone through all options as far as help with my parents go.
Just help me get through this! Please.
Dear blueeyedgirl,
My heart goes out to you, I can only imagine how strong you must be, and how tremendously dedicated to those you love to be able to do what you do. My oldest and dearest friend has MS, I have read several medical references to TN, to know you really only have to read the first paragraph, and can relate personally to back pain that never lets up. I am deeply sorry that you have so much to deal with so early in life, but things can get better.
I know you want to be part of your parents healthcare, but there may be a great service available, at no charge to them, available to take them to and from, when you are feeling exceptionally unable. A social worker may be your greatest asset for information, they are the most helpful of people.
I hope that you are getting good care, we are here for you when you need to vent, you know that. Hope that you are part of BF TN group, I have met some lovely folks from that group.
Love and hugs,
SK
I will also ice my back as soon as i get home between errands. Im DREADING the Eal Mart grocery shopping!
I have tried the free service for transportation in a live too far away from the Colorado Springs area to be able to use that service. The social worker case worker saying that’s what we’re waiting for right now it’s gotta wait for this day to decide whether or not my dad is truly disabled. We’re supposed to only wait 2 months in it’s been about 6 months now.
So sorry to give you advice when all you need is support. And your Pastor’s response was certainly useless. He probably just doesn’t know what to do himself. I know you will get through this. I am amazed you can handle a job that requires you to be on your feet. I’m so glad you have a daughter. At ten, her helping out can be very good for both of you.
Wow! That is a lot to take on for someone in your condition. I can’t begin to imagine how you do it all. Hopefully that good karma will come back to you ten fold one day. I also have back problems along with fibro & it’s a good possibility I’m in the early stages of MS myself so I feel your pain. —(hugs)—
Please forgive me for this question but have you tried calling your congressman? When I was a pastor myself 10 years ago, that phone call often moved the process along. But for today, just keep breathing.
Sorry. Some of my words got mis translated by my phone last reply. I hope you all got yhe jist of it.
I can pray for you. . . ! You are doing a lot of things - I think you need to take care of yourself first. . . sometimes we are embarased to ask for help. . . if you are, please DON'T. . . being as active as you are I am sure you have a lot of friends around you and with you that will be more than happy to help you if you ask. . . or not - I pray you do and you ask for help. . . IF YOU DO NOT LOOK SICK - NO ONE IS GOING TO OFFER ASSISTANCE. . . PLEASE - I HOPE YOU ASK AND PLENTY IS GIVEN TO YOU, BUT YOU CERTAINLY CANNOT GO ON LIKE THAT BECAUSE IT WILL BE WORSE. . . I will certainly be praying for you. . . taking too much pain medication has its effects on your internal organs - we must be careful, even with pain medication. . . taking it easy - balancing - is what works for me when it comes to pain. . . I am sorry if I have made it worse. . . I just don't know how to support you. . . take good care of YOURSELF. . . Gentle hugs. . . Irma
Of course! We admire you, remember you, and are here. Sorry, it is in our nature to try to think of something, because we really do want to help. I really understand as much as I can, I am a mess of all kinds of diseases and they are still suspicious of more, MS and Lupus are just two, Scloderma the other, I just have too many major symptoms of each to ignore. Illness throws so many walls in our way, some of them we never can anticipate, I really do think that love and devotion are some of the most powerful means to enable us to do the impossible, but I understand that there are limits there too.
I am half way across the country from you, can barely ride 10 minutes to the grocery store with spinal stenosis and Spondylitis, but wish you were closer, as there would be SOMETHING I could do, would do. We are all pushers, we have pushed ourselves great distances through many hells, personal and public to be here at this moment. I can push through more for my grandkids than I can for myself, but I am older and know my window is narrowing, so I am the queen of over doing it sometimes. Before this knocked me flat and kept me there for a long time, I was a fireball, worked like there was nothing I cound not do, took a while, but I got up, I just kept going to my Dr, who was treating me JUST for a car accident, but after sending me about to top specialists in major metropolitan hospitals, who could not justify my problems with my x-rays, he began to dig and dig. I have gotten better, I got OUT OF BED, and was able to do more as once in a while a medicine would help or a symptom would click. Getting to my present Rheumatologist, after my GP did the ground work, was really the key for me, but I do understand things show up when they do, not when you need them to, so proper treatment is elusive at best sometimes.
I hoped this has helped, on some level. I am practical, yet optimistic most of the time, although there are deep dark holes. Enbrel, morphine, and a few others help me function, sometimes rather well, considering, other times, are the flip side. A fantastic Doctor, and the devotion to you and/for yours are your very best of life's goodness for you.
Hang on, it just cannot always be bad, it will turn. Not sure if this is what you needed, it's okay if it's not, because I know there is someone here who you will just 'click with' who will have a thought that is an 'ah ha moment for you'!
The biggest of hugs,
SK
Hi Blueeyedgirl,
Wow.What a terrible place to be. I did suffer through 2 and 1/2 herniated discs on D4, L5 and S1. There seems to be no end to the pain. In time they will get better. I thought it was crazy that my doctor recommended baths but they actually helped. I would go from the bathtub to a the heating pad, then the gentle stretching exercises given to me by my PT. I used the Alexander technique. You may want to look for it online.
I am home for the day. Time to rest and relax…one day down, gotta work tomorrow then my daughers first ever band concert
Hold on sweetie, better days are ahead. Hoping and praying for relief
Dear Friend,
You are dealing with issues in you life that I find unbelievably hard and way beyond what I deal with with my fibro. I hardly know how to encourage you except that you can only do what you can do and I hope other help is available to care for your parents. I will pray that your doctor will help you with your pain and God bless ypur daughter who must go through so much in her young life. Someone gave me this saying so I pass it on to you-Jesus hears the whispers of our heart- he is acqainted with lonliness and sorrow- his love unites what is broken apart- his grace always gives us tomorrow. Remember, one day at a time. Lots of love, Bailey
Is there any way to have your parents transported to their appts? I know that some insurance will cover the costs of being transported. Also you may want to look into home health care, its not a 24 hour a day answer, but they take care of bathing, feeding, and some other things. Contact the local council on the aging and hospital for more info.
I feel your back pain. I have 14 herniated/bulged discs on top of having fibro, copd, 2 blown knees, depression, and the never ending fatigue. Like you I am on alot of rx for the pain and everything else. Just hang in there.