MS Warrior Or Am I?

By blackwolf065

3 min read

Howdy y’all!

To be honest, I don’t know where I fit in these conversations anymore. Let me tell ya what happened.

How it all began

Back in 2009, using two canes, I drug myself into the Social Security Office. I knew something was wrong because I had no feeling or control of my body from the waist down. After their doctor examined me, they agreed. Permanent nerve damage to my back. I was ordered to start seeing certain doctors like a gp and a neurologist.

Their tests found several problems including possible RRMS. After that, any doctor they referred me to refused to give me the time of day because they didn’t treat “my kind”.

Ignored for 10 years

The back problem wasn’t related to the MS so it was totally ignored until just over 10 years ago. They treated my uncontrollable high blood pressure and high cholesterol problem which took until 9 years ago to get them under control.

The answer was there all along

My MS — one neurologist after another ran tests over and over but not one would give a definite diagnosis. Until just over 10 years ago. I met one who looked at the original tests ran in 2009 and got angry because the answer was there! I could have been under treatment all those years. Instead I was fighting it on my own as I had all my teenage years.

Tragedy

Everything was good - I was in remission, everything else appeared perfect, until about eight years ago. I was struck down with a major heart attack requiring a triple by pass and a pacemaker/defibrillator. I spent three weeks in a medically induced coma during which I had numerous nightmares. When they woke me up, I remembered nothing - and I do mean nothing.

If not for my caregiver, who rarely left my room, I wouldn’t know my name, age, or anything. I didn’t even know which hand I wrote with. I remember believing I lived during the Civil War era and had to get home to protect my children from being stolen by the red coats.But I couldn’t even talk!

My MS stayed in remission during this time. Even though I was hit with the loss of blood - 4 pints to be exactly, which just proved I was anemic. Then was hit with stage three kidney failure. I caught everything at once. Thanking the powers that be, the MS was in remission.

Things were looking up

Finally, I got the all clear from the last of those. They were all back under control, I was slowly regaining my memory, reteaching myself the computer. I never regained memory of people but if they started talking like they knew me, I pretended to remember then asked my caregiver their name later, lol.

The cold that started the flare-up

Fate has a way of getting us all one day. My day came when someone, my caregiver’s son or his daughter, brought in a cold which I caught! My MS changed from then on. It burst out of remission and never went back! Anything - any weak area - is a target.

Right now everything is acting up at the same time plus extreme allergies. And each doctor says the same thing. “I’m not sure what’s going on or if it’s an MS flare.”

Losing faith

The kicker is with the pacemaker, I can’t have MRIs done to see what’s going on. All they can do is watch and see.

I am so tired and don’t know if I am still fighting or not. Or if I am still able to be the warrior I promised myself I would always be.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

kimberlybthatsme Member
<inline-mention username="blackwolf065" user-id="3954498"/> I'm sorry to hear how much you have been through! It's so crazy, but as it so happens I was just about to write an article on "NOT JUST MS" and how if I only had MS I would be the Warrior everyone else says they are. But as I explain to many of my docs, IF it was just "xyz" I would be happy to try this really expensive medication that I really can't afford and are afraid of the side effects (because my body always has side effect issues with all drugs I put into my body...from mild to I almost died kind of side effects). But since I have abc...lmnop...xyz, I am not willing to take a drug that lowers my immune system, may or may not work and gawd knows what kind of damage it will do to the rest of my body parts and what side effects I will have from it. I hope you can hang in there and being a warrior is overrated...at this point just having a couple of good hours a few days a week works for me! I just push through the rest with...or without tears and there is no shame in that. I wish you the best❣️
blackwolf065 Member
Thank ya. Although I never wanna hear that others have to go threw what I do, I am at a point where I appreciate knowing I’m not alone. I come from a warrior clan and was always proud of my ability to deal with anything put in my path. My life goal is to be here until I am 150 years young. But at the moment, I am exhausted. How do ya fight a body that won’t hold onto it’s blood yet won’t tell us where it’s going? 4 pints a year ago, 2 pints a couple of weeks ago and drs say I am already showing signs of anemia added to my blood pressure is already starting to drop. We’re pretty sure my kidney problem is linked to the anemia.
Laura Kolaczkowski Moderator & Contributor
It sure resonates with me when you talk about everything being thought of as related to your MS. As a partner of someone who had quadruple bypass, I can appreciate the struggle you had to regain your health. Because of the kidney problem, I trust you are also seeing a nephrologist who can guide your care in an appropriate way and not just a primary care physician. Keep on with the positive attitude in your battle and your goal of 150 years.
blackwolf065 Member
Thank ya! It feels like I am seeing every specialist under the sun and the ones I am seeing are wanting me to see more. LOL I have literally had to tell them that I can’t afford to go see anyone else. My insurance pays for a lot of things but I have 3 or 4 different amounts of office visit co-pays depending each time I walk into the doors. This policy was suppose to be cheaper than paying for four different insurance companies each month. Instead, I am doing my best to do what needs done on my own. My first kidney doctor finally refused to treat me anymore because I wasn’t able to pay what I owed him.
1. Lori Foster Member
 That has got to be extremely frustrating, @blackwolf065. It's a shame that money has to play such a huge role in whether people get the treatments they need. Best of all wishes! - Lori (Team Member)
blackwolf065 Member
f5hwo4 Member
I also had the extreme allergic reaction due to my MS. It was things I had never been allergic to before such as pine tree spores or cat dander. When it first started my face would start twitching before I had trouble breathing. Then I got to the point where my lungs would close off without any warning. I mowed the grass one day and ended up in the hospital. My neuro told me that it is something that happens to MS patients but rarely. I don't think it is as bad as it once was but I do try to stay away from something that might trigger it and I carry a EPI pen with me. Potter
1. Lori Foster Member
 That must have been frightening, Potter. I am glad you figured out allergies were the cause and that you now have an EPI pen. Sending lots and lots of gentle hugs your way! - Lori (Team Member)
2. kayleighhill Community Admin
 <inline-mention username="f5hwo4" user-id="3977349"/> My goodness Potter. I'm so glad you have that EPI pen with you now. That must have been so scary to go through. I'm glad you got some answers though. 🧡Warmly, Kayleigh, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> team
f5hwo4 Member
Thank you for the kind words, I wanted to give the credit to my neuro, he knew what was happening. The hospital I spent the night in told me I was having a severe asthma attack. I told them I didn't have asthma and they said you do now. I wanted Blackwolf to know that there is a huge percentage of MS patients whose diagnoses took decades. I wasn't diagnosed until I was 55, I had symptoms since my early 20's and two aunts who had MS. My doctor thought I was a hypochondriac. We have all been MS Warriors. Potter
blackwolf065 Member
It took a few days, but your words triggered a couple of memories. I grew up in a place where the amount of money a family had decided how they were treated. Of course, I was always “faking” anything wrong with me. My mother, when she decided to go with, would be told I just wanted attention. Then there was the time when I rented a basement apartment from someone. They knew I had MS and couldn’t do a lot of things. This knowledge didn’t stop them from expecting me to mow a third of the yard each week. So I did what I could and it took me three days to get it done. That wasn’t good enough for them and they ordered me to get it done in a day because they could do their third in half an hour. I did it in a day and a half and payed the price. I became numb from the neck down. Setting up an emergency appointment with my neurologist and getting rushed in to see him, he told me that I was lucky. I was temporarily paralyzed. If I had pushed and finished in one day, I would have been paralyzed permanently. He was so angry at the person I rented from, he wished they could experience MS for a while. He ordered me to never mow again or there might come a day I would become paralyzed from the heat the body generates. The people I live with now won’t even let me mow using the rider because now I am on a medication that doesn’t mix well with the sun. Plus they know what happened to me the last time I mowed. I also have allergies. Have dealt with them since High School. When I became an adult, I had my first asthma attack. Sometime while waiting for a definite dx of MS, I was dxed with COPD and told I needed to leave the north for warmer climate. It was when I made this move that I found a neurologist who would make a dx. I was about 55 or 56. Everyone around me thinks I got my disability because of MS, but I didn’t. I got it because I had no feeling from the waist down plus I had no short term memory. It was after getting disability that I was dxed with possible MS. 
1. kayleighhill Community Admin
 <inline-mention username="blackwolf065" user-id="3954498"/> My goodness, I'm so glad you are no longer living there and no longer have to put yourself in that position. I'm glad to hear you are living with people who get it and take care of you. That broke my heart to read what you wrote about growing up in a place where money dictated how you were treated. It's really upsetting that that is the case sometimes and makes me so angry to think about. How are finding your allergies now that you live up North? Thank you for sharing all of this. I'm really glad you are here and in this community. 🧡 Kayleigh, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> team
2. Lori Foster Member
 I am glad those people are out of your life and that you are now living in a safer environment, @blackwolf065. How awful of them! That must have been terrifying for you. Hugs! - Lori (Team Member)
blackwolf065 Member
I had to move south to escape the northern winters. Each year hear, I find them getting worse and a new one appearing almost yearly. I refuse to let them dictate my entire life. Just mostly what I eat. It has gotten to be a puzzle to find a balanced diet. And it’s so exhausting to read each and every label.
1. Lori Foster Member
 I am sure it is, @blackwolf065. I hope that watching your diet helps though and that you get some relief. Best wishes! - Lori (Team Member)

Community Poll

Did you know that you can create a status update on our site?