How I Found Out I Have MS
My journey began July 1995, 3 MONTHS AFTER I WAS MARRIED at the age of 20! I woke up one summer morning, in our small, rural farmhouse, with SEVERELY dizzy vision and what felt like a VERY tight corset around the middle. I couldn’t see straight with both eyes open at the same time and couldn’t hardly catch my breath or move because my torso felt so restricted. (Feeling like I was wearing a corset was the way I described it to my family doctor). Luckily, I got in to see my doctor that day (20 miles away). The neurologist from the city (70 miles away) was going to be up at our rural hospital in a couple of days and I got a last minute appointment with him. I was hot and had the previous symptoms I described, but I guess 2 days was not THAT long of time to wait
A leave of absence from work was what I had to take to figure out what was going on! The couch and I spent lots of time together! I didn’t want to eat because I wasn’t sure if it was going to stay down, but I forced myself to eat a few crackers and keep drinking water. I knew I needed to put something in my stomach to help fight whatever was going on with me!
My husband took me to the neurologist at our local hospital (also 20 miles away). My farmer husband was in between summer farm work and we both wanted to hear what he had to say. Since I was so severely dizzy he got me set up to do an IV steroid drip at the hospital that day and for the next 2 days on an outpatient basis. After that he wanted me to go to his office for a series of tests including an MRI and a lumbar puncture (spinal tap)! Yes, you read that right. He thought it was MS with the vision problems, so that was the path we were going to test for.
The IV drip cleared up my vision, but not my “corset” discomfort. My local doctor did a blood test and arranged for us to go back to the city and see an endocrinologist (gland specialist). So, in that next week we were headed back to the big city to see a different doctor. This one told me it was Graves’ Disease. That meant my thyroid was an OVERACTIVE thyroid producing too much (thyroxin) secreted stuff for my body and the only treatment was removal of my thyroid. For those of you that aren’t familiar with what your thyroid does, it is that little gland around your throat that controls most of what goes on in your body, such as weight loss/gain, your body temperature, and your monthly cycle for women.
Now back to removal of my thyroid. If you’re going to remove that gland, my thought was your going to cut my throat (look at the picture)? I think he saw the questioning look on my face. He told me he was going to go get a radioactive pill for me to swallow and it would shrivel my thyroid so it wouldn’t work anymore and I’d have to take a pill to get that hormone every day for the rest of my life. That’s when all my super hero thoughts popped into mind:
- Is this going to work?
- How does it know what gland to “attack”?
- Am I going to appear radioactive?
- HOW is it going to work?
- What’s it going to cost if it’s that easy?
When he came back he had a glass of water, a big horse pill in a little paper cup and was wearing a pair of surgical gloves. Ok, you’re wearing gloves to bring this pill, but I just put it in my mouth and swallow it with bare hands?
Ok, my tightness did eventually go away, so I guess it killed the right organ! I later found out that pill (the size of my thumb nail) cost $800 in 1995.
My tests showed NO SIGNS of MS, none on MRI or the lumbar puncture! He said I needed to start these (expensive $1000/month in 1995) MS drug injections. I told him I wasn’t going to because we wanted to have kids and I wasn’t putting that medicine in my body when it WARNS YOU AGAINST PREGNANCY. That’s the first time I got the feeling from a doctor that if you’re not going to do what I say, then I’m not listening to you. That’s when my husband and I decided to find another neurologist as we walked out of his office.
I started having what I call MS “episodes”. It happened at random times, usually in the mornings, when I went to the bathroom, but not all the time. I would get EXTREMELY hot, start sweating, get a buzzing in my ears so I couldn’t hear anything and my vision would just black out. Once I got cool it would only last about 10-15 minutes then I could go about my day! I tried to connect it with stress, what I had done in my life, what I had eaten, the weather, but nothing was the same! I started thinking “Oh great! More lesions on the brain”. But that wasn’t the case as I got more MRIs in years to come. It still happens, but rarely!!!! The joke with the MRIs was I had proof that I HAD A BRAIN. We have great insurance so we only had to pay 20% of that MRI bill.
I went back to work about 3-4 weeks later, but soon learned that I had to cut back to 4 days a week. I couldn’t keep up working 5 days a week, helping on the farm when I got home, feeding us when my husband got done at night, plus laundry and keeping our house picked up as much as I thought a “good wife” should.
We had agreed I would stay home with kids when they came. That didn’t mean that my husband wouldn’t have just as much raising them. It just meant that when he was doing something kids could be around safely he would take them and bring them back when it wasn’t safe. Besides Grandma, Grandpa and Uncle were at the farm with lots of attention to give!The rest of my medical story is listed if you want to read, but let’s get on with it.
Cooking with MS
I’ve found ways to make meal preparations easier over the years. If I have extra time, I might make more of an item to put in the freezer for another meal time or have leftovers to reheat. The best way to learn is don’t be afraid to try and don’t be afraid to fail. My family has been “guinea pigs” a lot. They will eat what I fix once. If they don’t like it, I tell them to help next time then they can have a say. If I actually plan ahead, I find meals for the crock pot to eat several meals, especially in the summer so the house isn’t heated. It works good in the winter for soups when it’s cold outside, too. I also get to be a “guinea pig” when my husband wants to try something. Usually food is edible, we just get to discuss what could be done better next time.
We live in a conventional ranch house in a hill. Air conditioning is a must for me in the summer. We don’t keep it igloo weather, but our curtains are pulled, the ceiling fans run throughout the house, and we have an extra stand fan for those really HOT days.Now back to cooking!
There are a few ingredients I find necessary in a meal and the rest is extra or filler if needed. For my family it’s meat a liquid (cream of something soup), maybe cheese, and a way of cooking it, such as skillet or oven. Onions, peppers, pasta are good for flavor and fillers. Just watch the liquid to dry ratio.
I made a quick cheesy garlic bread the other day. My meal was spaghetti. I boiled spaghetti in a 3 quart pan. When I drained the spaghetti, I added a jar of Italian sausage spaghetti sauce to the saucepan on medium-low to warm. When it was getting warm, I added the spaghetti to it. While the spaghetti was cooking and sauce heating I had my son help me make a quick, cheesy garlic bread to go with it. It was a roll of refrigerated crescent rolls. I separated the crescent rolls into triangles, spread a layer of margarine on them, sprinkled garlic powder on the margarine and put some leftover, shredded mozzarella cheese on them. Then I rolled them up like crescent rolls, starting with the wide end, placed on a sprayed cookie sheet and baked according to package directions.
I was doing laundry that day and didn’t have a lot of time to prepare a meal. The spaghetti sauce had meat, the spaghetti noodles was a filler, and the bread was an extra. Meal made. Problem solved. Less than 30 minutes to make with help from my son. Refrigerated crescent rolls is one item I always keep on hand. If not used for bread they can be seams together used as a bottom crust, pressed together as squares, filled with pie filling drizzled with icing and used for a quick dessert or sweet breakfast treat.
I just made a crock pot full of chili when it was really cold and snowy here. Chili has the basic ingredients of browned meat, beans, tomato liquid. Then everyone gets involved in what else would make it good. I used 3 cans of chili, pinto, kidney beans, 1 quart of home canned tomato juice (t.j.) (that needed to be used), 1 small can of tomato paste because the home canned t. j had more water, a can of diced tomatoes, chopped onion, green peppers, chili powder. That filled a 4 quart crock pot. We are on our 3rd day of eating it. We have shredded cheddar cheese of some kind to put on each bowl and mix it in with soup crackers. I put it on high to cook just to thicken it a little. I’ve used soda-pop size cans of tomato juice or the majority of a 48 oz. can. I leave some so my husband can have a red beer. I have even baked potatoes for chili cheese potatoes or fixed hot dogs to have chili cheese dogs when the amount of chili left gets to be less. I have used a chili seasoning packet if I have it on hand in place of just chili [owder. For us I don’t really use a recipe. I know after this long what it requires, then I just start adding. If it starts looking a little dry, I will add more t.j., or a can of tomatoes for more liquid. I don’t use plain water because it will dilute the flavor.
You just have to remember cooking IS NOT ROCKET SCIENCE! Try, fail, but keep trying and it will get easier! Just remember if the pan is glass square, round, or rectangle it probably doesn’t go on the stove top. It probably goes in the oven. Metal DOES NOT go in the microwave! When I 1st started cooking, I had to have EXACT measurements or ingredients. If you do it for 23 years, you can “wing it”, too!
If you don’t have someone to learn from and reading a recipe is like a foreign language, start with a meal kit. They are a good start to cooking! They are an easy start to cooking with a good meal when you end. Don’t forget they have special diets. Ingredients are shipped to your home or work with plenty of ice and insulation in boxes. All you have to do is put them in your refrigerator until ready to prepare.
Cook2connect.com plans not only to help people with MS, but anyone get a home-cooked, simple meal on the table easier and forget the fast food drive-thru more! This is a site for people who are tired of fast food, drive thru meals and all the calories involved. It is for the cooks who don’t have a lot of time to fix a meal, don’t want to spend a lot of time in the kitchen, want to know what ingredients go into their food, or want a made-at-home meal, but don’t know much, if anything, about cooking or don’t want to stress about what to fix. This website gives you places to get recipes to make, a subscription to simple-to-prepare courses, or a home delivered meal kit with instructions your family can easily assemble or those already-made, chef prepared meals chosen ahead of time. For those starting out, it even has places to get culinary tools to help. Many ways for you to get a meal on the table effortlessly.
Since everyone has to eat, I would make a website not just for people with MS, but anyone who wants a home cooked meal on their own table with their own family or friends in a short amount of time with as little effort as possible. I know there is A LOT of information, but with a busy life (and MS) it is easier to remember 1 website instead of 5. So this website will allow people to talk about their day with family or friends while preparing and eating in 1 of these 4 ways.
By searching here for places to get recipes to make yourself
Get simple recipe magazine subscriptions or cookbooks in your mailbox
“Some Assembly Required” meal kits
Or just have an already-prepared meal delivered to your home, great for dieters,or special diets, well-balanced meals, or elderly that live at home
Get food prep tools, pans, cookware, or small appliances delivered to your home to help you prepare meals
Cook To Connect Whatever Way You Choose
Whether you have MS in your family, another disability, little time because of activities, or just want healthier choices of what to eat, other than what drive-thru tonight, be sure to check out cook2connect.com. There’s something here for everyone, no matter what skill level you might have in the kitchen, you’re sure to find something here ranging from simple recipes, simple cooking magazine subscriptions or cookbooks, food prep tools, pans, cookware, or small appliances, to even precooked home delivered chef-prepared meals . Be sure to check out these places for more than 1 thing. Many places offer more than 1 topic I’ve talked about. Cook2connect is not about a disability. It’s about getting family, or friends, together for a simple, healthier home-cooked meal (even if you have a disability), so you can talk about what’s been going on!
Happy, Healthy, Easy, and most of all Enjoyable Eating!
Please leave me comments below about my website, me, or just anything you want to say to me. My email is firstname.lastname@example.org.I welcome emails and will respond as quickly as I can. THANK YOU for looking!