MSlisaSAYS on Living

Living with MS

What LIVING with MS really means…

Perspective from MSlisaSAYS

Still having problems is my MS, looks like I’m headed toward steroid treatments again. I think about the side effects from these like; weight gain, bad taste in my mouth, the increase in blood sugar levels, headache, fluid retention, and the wonderful lobster-red looking appearance and I wonder sometimes is it really worth it?  Yes I do feel stronger afterwards but it takes a while to feel these effects. This exacerbation was brought on from an infection I caught about six weeks ago. The weight gain probably disturbs me the most from it. I can look at the solution mix and put on five pounds.  I am not diabetic either so I find it funny that I have to go on sliding scale insulin while taking it. The doctors say I am just super sensitive to Solumderol. I have learned over the years some things that I can do to help with some of those problems and would like to share with you what I do to help. The things I mention work for ME. I am not suggesting you do one or any of the following.


  • Drink a lot of fluids, low calorie/sugar content
  • Reduce the amount of calorie intake, while eating a well balanced diet. Taking in moderate amount of protein for strength and energy, combine a good amount of colored vegetables for vitamin intake
  • Stay away from processed foods, sweets, and high calorie foods
  • I take a fluid pill to assist with elimination from the fluid retention
  • I keep small wrapped mints to put in my mouth to help with the metal taste I get while on the medication
  • When I am through taking the steroid and stronger, I continue with the diet regimen and start doing mild exercises for strengthening then as I improve, then add more time to a exercise program as I can tolerate to remove the additional weight.
  • Keep an eye on my weight, but weighing once a week at the same time of day and in the same type of clothing.


Hair loss is something I have been experiencing since my diagnosis. I always wondered if it was related to the disease, but having asked my doctor, he said that many people complain about the same thing. He feels that it is medication related and not a symptoms of the MS. I get embarrassed at how you can see my scalp on the top front of my head, and how thin it has gotten all over.  He suggested Rogaine to help with this. I haven’t tried it yet, but know someone who has.  It took several treatments to notice a little difference. I have also seen a product just today advertised to help with this, it is called Keranique. It states it is FDA approved and you can order it over the internet. When I mention things on this site, I want to say again, “I do not suggest you use or try these products”. It is either something that has worked for me or someone else that I have spoken with.


Bathroom Safety is an important topic. When you have fatigue, and you are having weakness, or other problems that could cause falling, bathrooms are probably the most dangerous area in your home. I have falling and knocked myself out by hitting my head on something a couple of times. Bathrooms are usually a close space; with many hard objects is a small proximity. Even your floors are not carpeted usually which makes the landing difficult. I would like to tell you some things that have helped me with moving around in my bathroom.


  • A shower chair for the tub. I have found one that actually hangs over the side of the tub so you can sit down on and scoot over the side while getting in and out it. This has help me from falling when I haven’t raised my leg high enough to get in and trip, falling in the tub. It is also great to sit while taking a shower when my strength is limited. I have trouble taking a bath. The getting down and up out of the tub is difficult for me.
  • Install a hand rail next to the shower entrance if you don’t have a sturdy object to hold on to while getting in and out.
  • Floor mats or rugs need to have something under them that prevent them from sliding or turning up. It is easy to get your feet caught up in them.
  • Applying a soft cushion to the edge of your sink or vanity to protect yourself from the hard edge if you do fall.
  • Never go into your bathroom alone. Have your cell phone or a phone with you if you are alone in the house. If you live alone, look into one of push button help service devices you can get that will call 911 if you fall or find you need help.
  • Put shampoos or other liquids that you use daily for hygiene in smaller easier to handle plastic bottle or containers. I have a hard time holding the large bottle of shampoo and drop it a lot. These are inexpensive and easy to find in different sizes at Wal-Mart.


Having MS lead me to giving up a career I really enjoyed. I was so wrapped up in my job that, that is how I identified myself. Afterwards, I was totally lost to who I was or even not knowing what I enjoyed. It took a while to get my bearings together, but I found out that I had unknown talents in different areas. Hobbies are very important to have. It keeps your mind active and you can distract yourself from how bad you feel some days by diving into a hobby. It can range from enjoying reading books, sewing, and painting, to talking to others about your experiences with MS or your interests. Believe me when I say it is a very welcome distraction. Branch out and learn a new hobby. You never know if it something you might be able to make money from in the future.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.