looking towards the future

[redman44]

good morning. I have been running around in denial. I didn't know I needed to see certain doctors for certain things. but thank God I'm on the right track now. I don't like bothering people with my problems. but if I had of told you guys what was going on I'm sure I would have done things different. I'm new to having MS. I applied for disability I been waiting on a healing but its not going away I have to do what I can and accept what I cant do anymore. I was ashamed and feeling useless. but thank God I'm alive.

[rjoneslaw]

@redman44

I understand what you are dealing with and what you are going through I have been there. I started having symptoms but I was in denial and I didn't want to be a burden on anyone so I said and did nothing it only got worst. Once I accepted what was going on I was able to get the help I needed. I'm issue started Nov 2015 I didn't get help til Feb 2016. I lost the ability to walk. I was diagnosed 7/2013

[SueAB]

redman44, You are making yourself reinvent he wheel if you do not share on this site! Many of us have probably experienced the same things as you! We certainly are not MS specialists, but we do live with it, just like you do.

[agapepilgrim]

redman43 we all would like a healing. I have been praying for my daughter with Crohns Disease for 26 years now. I figured if she wasn't healed, I wasn't gonna be healed of MS. And since I had a very seeet cousin, much nicer than me, die of MS, I decided I would be leaning on God one day at a time to get me through this jungle maze of swamps and snakes and gators and bugs and quicksand that has taken over my brain. So far, He has given me the grace to keep walking, keep talking, and able to care for myself. For those I am thankful.

[redman44 in reply to agapepilgrim]

AMEN. I realize how blessed I am.

[Doubled51]

I think we all went thru a period of denial and hurt after being diagnosed with this monster called MS. But then we accept that there is nothing to be ashamed of. Its nothing we did wrong and nothing we can do about it. Just accept it and iive your life1 day at at time. Enjoy every minute of the good days and roll with the punches on the bad. When you are questioning anything your going thru somebody on this site can help and encourage you. They have been a blessing. Hang in there. It will get better. Blessings to you.

Donnie

[Nom_De_Plume in reply to Doubled51]

@doubled51 Amen to that! ...and, @redman43, this is all very true. I think denial is a normal coping mechanism for many people, at least in the beginning. I think it is our mind's way of protecting ourselves from the huge blow that is this disease. we are in denial until we can begin to handle it.

I had a hard time with the idea of "acceptance." People would say to me, "You've just got to accept it" and I would just bristle. I'll never accept it, I'd say to myself. It will never be acceptable to me. This remains true. We do have to live with the understanding that this is our life now, and then strive to make the best of it, ... to make the most of it.

When we begin to face this disease head-on, then we emerge out of the denial state.

It's normal. It's a tough process, so don't be ashamed!

[redman44 in reply to Nom_De_Plume]

THANKS. I feel better already just talking about it with people that know where I'm coming from and trying to get disability is trying but I want my money I worked and put it their. I'm going to get because my lord and savior say he will provide.

[Nom_De_Plume in reply to redman44]

@redman43 Good! We're all glad you're feeling better and we do understand what you're going through.

Also, many here would wholeheartedly agree that your trust in God is never mis-placed!! 🕊

[Doubled51 in reply to Nom_De_Plume]

Well said. Don't let this disease define you. We can over come so much that it has taken from us by pushing on and emphasising on the things we can still do instead of focusing on what we can't do.blush on. Enjoy life. God will help us thru if we let him. Be strong my friend. Life is short. Enjoy every minute of it. Be blessed.

Donnie.

[Amore55]

I am so very sorry that you have been carrying this burden by yourself. You have a whole, big, loving family here to help you carry it! We all love you and support you in all things. Kelly 💕

[Diva1976]

I'm still in denial some days. I use to be on the go! I could walk fast! I could wear stiletto's! I could work! I could make plans and be there! I could wash my butt quickly! I could dress myself fast! I could walk without a wobble.Now them days are over! Every thing is SL....OW.... now!

Every time I think I'm at a accepting stage. Someone in the fam is going there has to be something to make you better. Your medicine should be improving you. Than I have to explain the MS medicine is to stop new lesions, etc. vs. what was found on MRI initially. Than some days I say nothing because I'm not about to waste energy I don't have on explaining to people who don't get it!

[Doubled51 in reply to Diva1976]

So true.

[Nom_De_Plume in reply to Diva1976]

@Diva1976 man, I miss my high heels too! Sigh!

Now I have a (dang) rollator. Ain't no way to dress that up. It is the worst possible "accessory!" Blech. Makes dressing up seem pointless. Someone said to me, you should just put some bling on it, then. Yeah, no. Nothing but "invisible" paint would work for me! 😩

[Diva1976 in reply to Nom_De_Plume]

Exactly!

[SlmHarris]

Try hard to think positive. There is always some one out there that is worse off. Make and go to your Dr appts. You are not bothering anyone here. We are here for you!

Wishing you the best

[redman44 in reply to SlmHarris]

thanks to all of my MS family. I was so in denial. but I always been a fighter I am the one that keep everybody else up but they don't understand what I'm going thru. I told them to read some of you guys stories. now they understand more. I have been working since I was 15yrs old. my last job I was their 16 NEVER missed a day. I'm not scared of MS it hurt to know I cant work again but I'm gonna get better about it I thought about going to school to learn something new I'm not scared of change but my eyesight is so bad. I thought about how both of my kids finish with college and can take care of themselves I don't owe work nothing will SURVIVE.

[jackiesj]

Oh I am so sorry for your pain.We get denial here....One day I threw all my meds away(don't do this).....thinking this has got to change.I learned many lessons not to do that again.sometimes its get thru the moment, pat yourself on your back for even sharing!

[agapepilgrim]

@jackies when you threw away all your meds, what was the side effects? Did you throw away whatever DMT you were on? I am so mad and so sad during the last 2 weeks, and doctors disgreeing on what I should take or not take. When my primary care took me off my anti-depressant because of very low sodium , and I have had basic low sodium for 30 years, I said "this is crazy!" So, along with the anti-depressant (Celexa), I stopped my 3 meds the allergist put me on; I stopped the prilosec and topamax. In all, around Aug 1st, I stopped taking 8 medicines just out of disgust for the medical field (included Capoxone). Yes, jimeka

[jackiesj in reply to agapepilgrim]

I had terrible withdrawl from? but anything you take constant you can react.One at a time with guidance I now see is smart.i have low sodium also....can make one sleep a lot and dangerous.how do you feel not on those 8 meds you were taking?

[agapepilgrim]

@jackies and @jimeka my neuro knows I quit Capoxone. It was causing the horrible blood red, blisters/bumps/whelps/itching. I still have red rash on both arms, still on steroid cream, but at least it's tolerable. I am in the process (excuse me, the medical field/pharma world) is getting me started on Tecfidera, but I called my insurance to check on co-pay and they said they never received a prescription. Yet, Biogen has already called me. I am going to counseling since Mandi is gone, and I told the counselor, "the real me" died a year ago 6/16 when finally diagnosed with MS and told I had it for 53 years (temp blindness in left eye at 17). I give God all the credit for giving me the strength and courage and fortitude to live with the pain and all the other symptoms these 50 years, mostly because the specialists I have been seeing for 40 years, all gave me false diagnosis, and I had the hope I would get better. On 6/16, I gave up fighting the fog, the pain, the emotional roller coaster, because I knew this time it was not going away, it was not going to get better, no matter how good the diet, how much exercise, how many positive thoughts, and how many prayers - this is the big one, kid, it's down hill from here. I was very angry, so I held Mandi even more, clung to her when the tears came. I was diagnosed one time with Cushing's Syndrome, and when the vet told me Mandi had Cushing's Syndrome, I knew her end was also on the way, with nothing to stop it. My neuro said the best DMTs out there only have a 30-40% success rate in slowing down damage done to the brain. This last visit (7/31), I asked him then why should I bother taking drugs that my body is having horrible allergic reactions to, since I am 70, why not just let it takes its toll, after all, "old age" has a lot of the same symptoms. He said it was my choice. None of the meds were tested on anyone over 60! So, once again, I am the guinea pig! so far, nothing working. And it is so empty in my home when my husband isn't home, because there is no pitter-patter of 4 little feet, no one to lick the tears away, no one to scrunch up beside me, so I prayed and prayed, and told God, I give up. It is up to him. About the last 30 days, I have been told by someone in the medical field, 3 different times, 3 different specialists, that I need to be admitted to ER for mental health assessments. That makes me angry all over again - I cry and say you would be upset also if no meds were helping your MS, youry 15 yr therapy dog is gone, and I have a very difficult time controlling my emotions because I NO LONGER am in control of my brain. I cry, and their answer is to go to the ER immediately, are there any weapons in the house, am I having suidical thoughts (NO, too mad), and one asked if I was having homicidal thoughts! I asked what does that mean??? She said do I want to critically hurt someone? I laughed! ME? I put the ladybugs outside because I don't lke hurting anyone or anything! A friend recently sent me a song on YouTube by Ivan Parker, "I Choose," (I think that was name of it, I have MS which causes a lot of memory loss - lol). Anyway, it described me perfectly, and the end of the song is, "I choose You, Lord." No matter the pain, or sadness, or confusion, or sorrow, I will keep my faith in God, and believe that He will somehow use these things for my good. As Joni earkson tada said, (paraplegic), "don't pray for the healing of this body, pray for the healing of my mind, that I will be peaceful, contented, loving, filled with His joy, because that is where peace is." I have rambled enough. I said I was going to pick up some clutter around the house today, maybe take 30 minutes, hopefully, so I got up around 2 pm, fixed me a salad and drank my electrolyte water, and haven't moved from my pc. You guys just get me talking and I don't know when to stop! God bless each of you, whether you are up or down emotionally, or in pain or beyond feeling pain, whether you are walking or stuck in bed, whether you have a loving caregiver or you walk this path way physically alone, "It will be worth it all when we see Jesus face to face." Love that song, and so appreciate this site. My cat has disfellowshipped me since she lost her best friend, too (maybe she blames me) and pulls her head back even if I just reach out to touch her (and to think, she was sleeping with me a month ago - but I guess she was sleeping with Mandi who was sleeping with me - so that makes for the quietest house I have ever been in. I haven't lived alone since I was 19. I forgot how alone you can feel. I am thankful, though, that my husband went to church today. First time he has left me alone since I lost Mandi, but that means he believes I am doing better mentally. And I am. I am not singing, but neither am I crying my sodium away! Need to find my charger! ((LMHO - need one for my body, if anyone knows where I can buy one reasonably cheap!).

[jackiesj in reply to agapepilgrim]

oh my dear one, my heart goes to you.Within your sharing for somereason I now fel normal.Your cat disfellowshipping you?More like they do sense we may be more sensitive to their dander and they are smart!Part of a battle won if you have a husband that believes in the Lord the ways you do.Good for him to go also.Yes when you find that body charger pass it over!Thinking of you!

[CalfeeChick CommunityAmbassador]

redman44 I just came across your post and wow, I sure can relate to you. Even after just 18 months, I still feel denial and lift myself out of depression often. I've always been upbeat, positive minded, high energy, then WHAM! MS hit me like a Mack truck. My brain is going 300MPH and my body about 15 MPH.. Then when my brain and body slow down and my thoughts turn to counting my blessings, I realize I've been very fortunate in all my life. That I had a good life for many, many years before MS and probably a few more good years, just a little different than what I thought it would be.. Blessings