Good days and bad days: Good morning... - Neuropathy Support

Neuropathy Support

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Good days and bad days

franklin1970
franklin1970

Good morning everyone God bless all of you and I hope all of you are having a good day or will have a good day. I’ve been up and down lately I’ve gotten yet another cold and it’s worse than the last and I have been out of the house much and I’m going crazy still exercising every day and I’ve lost 14 pounds since I’ve gotten my blood sugars under control which is positive good thing the new medicine is helping when I do have the main pain meds so that helps and then the Toradol will help me with my daily inflammatory pain and other pain. My doctor is referring me to a hospital so that they can cut the system off my radio as they’re worried about a burst and causing an infection. So I’ll be glad to get that out-of-the-way and then there’s is coming again tomorrow and seeing they’re going to start wrapping my legs to help the blood flow through the vessels properly as I have damaged vessels in my left leg. I have totally changed my diet around to all healthy stuff I I can’t have bread but my doctor said I can have spinach wraps which I absolutely love and it’s great because you can put turkey in it with lettuce and stuff or even garden salad in a bag that you made him throw it in the wrap with chicken or turkey and tell him whatever he is if he’s little mayonnaise or you measure everything out so you’re not using too much could you get a watch the sugar’s and I I still have problems were cramping my bottoms of my feet swelling I have a squished elbow pad injury and I woke up today and it was hurting really bad and I have no feeling in my right hand at all slowly coming back and trying to stay positive for for the most part you’re tired you get knocked down a little and then he’s got to get back up but lately I’m finding it hard because I haven’t been going out much because I’ve been sick with colds are just annoying already because each time It’s worse than the last. We all got to just work on our journeys take it day by day moment by moment remember our stress releaser is like 3 deep breaths thinking happy thoughts and positivity and hugs 🤗 and support. No put downs and just be as strong as you can talking helps and yes I am struggling right now but I am faithful and hope-full and I pray to the lord for strength as being housebound other then Doctors appointments. Oh went out last Friday with my husband and his parents and my thoughts have been focusing too much on people putting me down. I am always loving and positive and supportive and full of love and caring for others as that’s who I am. I will always be myself and if someone has a remark to make I will be respectful as I always have, but will stand up for myself as I have no one to talk to about that. Good bless all of you today and every day may the Lord protect you in every way may he fill your hearts with love in your soul is with peace and happiness and tranquility and may he help you give get the strength you need to get through every day every moment and let us remember all to enjoy life as it is take take small steps baby steps as tomorrow is never promised and just try to be as positive and as proactive in your journeys so that you can work with your doctor resort community services or whatever if you need counseling or Someone to talk to where there’s support groups online Ext. Yes we all have each other on here but sometimes a little need a little more support and that’s in your every day life and just remember you we are all loved God loves us all and we just got to make compromises with their bodies to adjust the way we do things and still live as best we can remain positive and just standing strong and handing it over to God and just remember it always respect and love each other as after all that’s all we have at the end of the day is love and support the Lord‘s word and his blessing and his hugs and his grace and his warmth wrapped around us! Amen 🙏

4 Replies

Hi. You are extremely lucky to have all the support that is being given to you. Every time I go to my doctor he just says "there is nothing more we can do". It is like banging your head against a brick wall. My family and friends do not understand peripheral neuropathy and think that if you rest it will go away! In the meantime it is getting worse on a daily basis and I feel so very much alone. I hate taking medication because of the side effects but what else can I do. My next step I think is changing my doctor as I have no faith in my present one and to me that is a very positive step. I just want a doctor that will listen to me and give me some support xxxx

franklin1970
franklin1970 in reply to Karjade

Yes I agree with you and I went through the same thing with my doctor before she was so busy and that things were forgotten left unattended and I probably wouldn’t be as bad as I am today if stuff has been tended to accordingly. But with the hard work of my pain Doctor Who got involved and got my doctor on board as a team with him it took a long time but it happened and now things are being done by now is a little too late because my vessels in my left leg are damaged permanently no cure and my neuropathy is acting up my right hand is so numb. And my hip gave out yesterday and I fell between the dresser and the bed and then my hair and then my leg gave out yesterday and I fell again. This morning I went to get up out of bed and walk my hip gave out again and I fell in the hallway. I’m doing my chair warrior work out every day eating healthy and I made the support happen with the doctor because I went to my pain doctor about stuff and he really helped me. I took my own initiative To get the home care set up I called them myself and just let my doctor know. My RN who is my case manager and the student who came with her the first time deserve a real look over on my chart and seen that I had cervical cancer in 2000 and it was laser it out and I had a tumor in my stomach the size of a watermelon 20 cm that they shrunk and then I had a prolapsed bladder. My legs are still burning my feet are cramping Charlie horses in the legs in the feet off the swelling and even though the doctor said they are doing everything to save my life so obviously at some point I’m going to die. I accept that because I’m in the Lord decides to call me home he calls me home amen 🙏 I have been going through this for so many years now I went through so many neurologist so many specialist also had a pituitary tumor in the past that was the size of a walnut and they shrunk that too but then it left me with the chemical in balance so I am on meds for that. They also told me I had atrophy all over my body just in that area alone it is hard and then I have neuropathy lymphedema so bad and I have degenerative disc disease in my back and broke my knee four times have two broken toes in my left foot for it or just split in half and laying Side by side inside my feet in my foot. It hurts so bad to get dressed everything is a challenge I wake up in pain every night because if it ain’t one thing it’s another thing causing pain feels like a vicious endless battle but me either try and make the best of it or we give up and I’m just not ready to give up my body might be immensely I am not. I’m so sorry for what you were going through and I want you to know that there is help out there perhaps check with another doctor. Get somebody who will listen to you a good doctor will sit and listen to you that is important because you go to a doctor they’re forgetting everything are not doing a thing that happened to me for years and that’s why am in such a bad state now. The nurses were out rages to find out that I haven’t been having Pap smears done for the last 18 years and I guess after I had this laser surgery across cancer institute there they should’ve been doing them every year I found out and I had one done in 18 years and then I found out I am I should’ve been sent for mammogram because my grandma had breast cancer and I should be getting a Mammogram. I should be getting checked every year? I feel for you as I went through the same thing as you and for years and I felt hopeless and helpless and just like giving up just like you did right now and I preach to you I prayed to the Lord to bless you to knock it down to bless you to lift lift your spirits protect you and help you get a different doctor that cares when they don’t listen to you take your own initiative called your community homecare and it’s covered by the community and you can get homecare and it’s free and they will look after you and believe me the extra help is crucial in helping The progress of your illnesses. All our hearts go out to you and to others all I can say to you is I’ve been where you are and I’m finally being heard but I had to take the initiative to make that happen as doctors just so busy double booked so they make more money and a lot of times patients that have severe into care of all diseases or left on attended for so long things that should’ve been done not done made this so much worse for me now.I just want you to know that I’m here for you anytime if you need to talk or you need to ask questions about finding a doctor or community service access for home care are you guys just going to call the number for home care in your area and tell them your situation and tell him how bad you are they will come in they will assist you they will they will they will clean your house you will get a case manager with a registered nurse and she hears you and she will help you change the nineprogress to progress this will help boost your morale and your positivity and give you hope again you must take the initiative to initiate this change for yourself and be respectful but being adamant his be proactive and I have the doctors on board with you. If your doctor doesn’t want to help you says there’s nothing out that we can do which I heard for seven years before actually about 10years Now after I got upset talk to my pain doctor he’s Christian like me and hold him and we actually found out my doctor was hiding stuff from me and that really upset me and one thing I’ve had doctors say I have too much wrong with me but you need to find the right Doctor Who specializes in maybe autoimmune diseases with no cares and access your community homecare you can call them yourself that’s what I did and then I called my doctor and said I set up home care as I need it for chair and the buyers on my feet are swollen my ankles are swollen like balloons and It angers me a lot of the time that I was left for so long and my diseases got worse none of which have cures. I am just trying to help you and I am just trying to share my story with you to see that you realize that this happens to a lot of us because Dr’s when they don’t know what to do they just say oh there’s nothing more we can do for you every time I heard that I wanted to give up but then the strength of Lorde something inside me just said no no more I am going to do something about this I don’t wanna live like this anymore. It took a little while but once I got my other doctor on board and then I called home care as I have a cyst on my heel that I am now going to have to go to the hospital to get removed so I don’t get infection if it bursts. I’m sending big hugs your way and many prayers and I pray that you will not give up trying to be a little positive if you can I know that situation it’s hard to be and you will have really bad days and you might have good days enjoy the good days and all the bad days there’s doctors need to get you a medicine that helps with your pain and maybe or something for depression I am on Pristiq And it’s for my chemical imbalance with my depression. I hope you have a good day today and every day and I hope you can get a lot of your stuff resolved it’s OK to call community service to you and talk to someone online through community Hall home care you can talk to somebody there in your area and that would help you that’s what is therefore and we all need it once or twice once from more in our life or whatever from time to time and there’s no shame in that were just helping ourselves and we go to use whatever tools are available that will help ourselves to be more positive and stay afloat but the big thing when a person is has so many in curable diseases is finding a medicine that helps But doesn’t have awful side effects. So many different meds have so many different side effects of not only do we put up with the with the symptoms of our in terrible diseases but we also put up with side effects of the meds we must take to help our incurable diseases and pain. So please dare talk to me anytime talk to somebody is there is no shame in the hat and take my advice or you don’t have to because this is it I’m just telling you my story and tell you what I went through and I just wanted you to know what I did to change that and I you are your own person you are your own advocate you must be proactive and your care as your doctor seems to be doing nothing like my dad for years and told me the same thing there’s nothing more we can do for you no they tell me my Doc were trying to save my life. When I heard those words that I realize there really was dying and they just didn’t tell me she told me my GP just told me two weeks ago and I absorb that I cried and I prayed to the Lord I did get a little depressed and I kept praying and then I decided I’m not giving up I just cat I got a loving husband had two girls family and family is precious no matter what family guy friends are precious anybody around to who cares for you respect you listens to you and wants to help you and be supportive as having this really will help a person in our situation. May God bless you today and every day may he comfort you every day and wrap his warmth around you and warm your heart and soul I can help you feel peace and pain-free for a while see you can enjoy some precious moments when you’re not in pain and enjoy those precious memories that come with them. The Lord is watching out for us but the world is in the havoc with all the violence or natural disasters in the world 🌎 The Lord is trying his best I often refer back to the Bible psalms is my favorite section of the Bible as it has many different meanings and sayings that cunt that mean watched my heart Psalm 73 as an example read it. May the Lord help you change your doctors the Doctors attitude I made you feel empowered because you are making that change since they don’t want to. I’m using my microphone to text here so hopefully I’m not making any errors in my spelling and I will pray if you like everyone else on here and I will pray for the Lord to give you strength to take initiative and just stand up for what you believe in and we all know our own bodies because we live in him the doctors don’t see you go see them once a month or whatever and you come in there and they might say oh you look great but they have no idea for the last month you’ve been suffering in agony! Well have a good day or put a smile on that face and I need tell me to talk just message me on here and I will return your messages soon as possible and I hope that you are able to get home care assistance and by working with the nurses your doctor has to constantly have open open communication with them and this allows you to be proactive with the nurses and You will understand more about what’s happening to your body. If you look on YouTube and click lymphedema go down and here’s a video for graphic you and university lymphedema video the lady on there is Heather she is the person in charge of the lymphedema clinic has a Video at Grant MacEwen University! The video is called Lymphedema and treatments! 🙏😇🤗🤗🤗👍👍💪🏼💪🏼💪🏼💕💕😊😊🙏🙏🙏🤗🤗🤗🤗🤗🤗💪🏼💪🏼💪🏼💪🏼

Karjade
Karjade in reply to franklin1970

Thank you for your lovely reply. I will not give up trying to see if there is anything out there which may help. I am going to see if I can have an MRI scan on my back as I have scoliosis in my lower back and was wondering if this is contributing to my feet burning, tingling and the numbness. We have a new doctor in the Practice and I am going to make an appointment with him but I do not hold out much hope that he will refer me! I am used to being refused a referral but I will never give up. I phoned the Scoliosis Association UK and asked if it is possible for my feet to burn, tingle and feel numb with scoliosis in the lower back and they said "yes"! I know I am clutching at straws but I need to do this to see if there is a connection between the two. The Association gave me some names of spinal Specialists who can help me so we will see. Will let you know how I get on xxx

franklin1970
franklin1970 in reply to Karjade

Yes there’s a link between the two. I have Degenerative Discs Disease and my legs shake burn go numb my legs give out if I walk long distance with my walker and then I have to use a wheelchair but there’s a connection and Neuropathy also adds to it. Remember dear it’s your body and you make them listen. I had to call the Board of Physicians and Doctors! I was left in a room for 8 hrs no blankets offered no one checked in on me. I cried and then when I did finally get a doctor he was rude to me and said there’s nothing we can do! Follow up with your family Doctor! I went there under my docs instructions and then went home, but I called the Board and they were outraged at my treatment at the hospital and I was heard and they took action. Some docs think that people with our problems are incurable diseases and say! “There’s nothing much we can do”? You tell them you need help and some will help others just push you aside or conveniently forget about you! That’s why I have got Homecare and I had my legs wrapped today for my Lymphedema from my Homecare R. N. ‘S that came over this morning we’re so nice and caring and professional and funny 😄 and if I feel very down I can talk to someone. So can you dear as you access your community resources. Your in the U. K. I live in Canada 🇨🇦 and I’m Ukrainian. Cool we’re European ladies hot ladies 😂

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