MS Life

What a week it’s been! I am very happy that it’s Saturday and I have absolutely nothing planned for the day. On Monday, I saw one doctor. On Tuesday, I saw another doctor. On Wednesday, I went running around purchasing items for a party I was throwing on Thursday. On Thursday, the party of course for the ladies and on Friday, my husband’s work dinner party with all the hoopla.

So let’s see, I may have already mentioned this in a previous blog, but you know how MS works on people with cognitive issues, I don’t remember. Oh well. I’m too tired to check it out. So don’t mind reading some things over again. Monday, I saw my vascular surgeon. A year ago I noticed that my feet were swelling. I thought nothing of it. I thought that perhaps I was having too much salt in my diet or that it was normal water retention, so did my Internal Med Doc and he gave me a water pill subscription, but my feet started to hurt. As usual, I went on Google and started hunting around and all the web sites said the same thing pretty much. Stick your feet up in the air over the level of your heart and cut back on salt.

I hope you’re thinking the same thing I was. How in the world would I get anything done with my feet up in the air? And what about those water pills? I don’t have enough problems with my bladder? I had pills for that too! I wondered then, there must be a major war going on inside my body. All these little pills are probably attacking each other. Remember that movie where people get shrunk down and go into a body? That’s what I was imagining. Gradually I noticed that my legs were beginning to swell. So back to the Internal Med Doc to find out what was happening. He decided that the pill wasn’t strong enough so he added a second pill to take later in the day. I added the pill to my family of pills and would periodically stick my feet up in the air. None of this helped.

Meanwhile, I was seeing a Haemotologist because I was having a severe episode of anemia. My red blood cells measured at 5, which is way too low. She noticed my legs and asked me if my Internal Med Doc knew about them. I then explained to her what was happening and she wanted to update my meds file. When I told her what I was taking and the dosages, she told me that both of those pills were very strong and they should help but since they were not helping, that I should be taken off of them. When she asked me about potassium, I looked at her and said, “That’s not one of the vitamins I take.” She just about had the screaming meemies. Apparently when you take water pills your potassium levels can drop dangerously low. She could not believe that I was not given a prescription for potassium pills. She called my doctor and I have no idea what was said between them, but when she returned she handed me a prescription for potassium and told me to march right down to the pharmacy and get it filled. Have you seen potassium pills? They are horse pills; huge!!! So I took them home and the pill family made room in the box for them.

Over the next several months, my legs turned red and then partially almost black in patches. My poor legs looked horrible and I went out and bought a bunch of long skirts which is easy to do since I only stand 10’5″ tall. I could wear a mini skirt and it would nearly touch the ground! Nothing helped. I decided that the water pills were a waste of time so I removed them kicking and screaming out of the pill box that I keep on the kitchen counter. Happily, along with that, I was able to say goodbye to the horse pills as well (potassium). The pill family closed the circle again. When I went to see my Internal Med Doc, I told him what I had done. He decided it was time to send me to a vascular doctor. That vascular Doc took one look at me and sent me to a vascular surgeon. The vascular surgeon told me not to worry that he would get me fixed up. He ordered some tests.

It turned out the femoral arteries in both legs and the saphenous artery in my left leg had decided they were tired of opening and shutting gates 24/7, so they stopped working and were on permanent holiday. How it was explained to me is that there are tiny little gates in those arteries which prevent blood from refluxing back down. If those gates aren’t working, the proper amount of blood was not going up into my brain. The circulation was skewed. So with the gates not working, the blood that wasn’t circulating was hanging out having a party in my legs which caused all the swelling and discoloration. So there I was with very painful swollen legs and looking for shoes I could get into. By the end of every day my feet felt like two blocks of brick hanging off my now swollen stumps. The feet and the legs matched in their painfulness. Add to that my foot drop and my low platelets; I could barely walk around my house. My diagnosis was deep venous insufficiency.

At the same time all this was happening and seeing the Internal Med Doc, the Vascular Doc, the Hematologist and the Neurologist, I had had just about enough. After a year of shortness of breath and loss of hair, I was able to get control of the platelets barely missing having to get a transfusion. The Hematologist released me from her care. The Neurologist and the Internal Med Doc, I’m stuck with. But sheesh, I had lost a doc so let’s add one here. My Internal Med Doc decided I needed to see a Urologist to help me handle the issues with my bladder. So off I went to meet yet another Doctor. He read the report results of a test that I had taken a few years earlier where it stated that I had a neurogenic bladder. This is where you have both sides of the coin to deal with. On one side of the coin you have urinary incontinence and it was noted that my bladder was very tiny, and on the other side you have urgency, you go, then it feels like you still have to go because your bladder doesn’t empty completely. He decided that my pill family needed another pill. So the family had to deal with yet another newcomer.

Okay, I realize that I’m still on Monday! Getting back to the original paragraph of how tedious a week it’s been; Monday’s visit with the Doctor ended with his telling me that I needed to see someone else. There was nothing he could do about my condition because it was chronic and there was no cure. I asked him why this happens to people and he had no real answer except to say that my condition was called venous insufficiency. He was sending me to some specialists with American with Disabilities to get outfitted with compression gear. I am very short so normal compression stocking would not fit me. I tried several brands but the landed up gathering around my ankles and turning into tourniquets which was extremely painful. So that was the end of Monday.

By this time and actually for a very long time now, I feel as though as a patient, doctors don’t look at the whole me. They just look at the parts of me they are interested in. If it’s not in their field, I am referred to someone else. Little pieces of me are referred out for analysis to different specialists. Even the Internal Med Doctor feels much like someone who is making a list of where to send me rather than helping me, but that’s today’s medical care procedure.

On Tuesday, I met with the compression specialists who made marks up and down my legs every few centimeters for compression braces that were to be made for me. I found out that this was not covered by Insurance because insurance companies think of this more as cosmetic. There is no cure so I guess insurance companies expect you to do nothing about it and just sit about loathing the way you look. It ran me about $1200.00 to have this done. How sad is this? Tuesday wasn’t too bad except that it took nearly two hours to get through the whole process and then the trip there and back. I began feeling disgruntled and just depressed about how my body was just falling apart.

Wednesday was spent running around from shop to shop purchasing items for Friday’s part. It was not a happy time. I was very tired and had a lot on my mind. I walked around in a fog lethargically throwing things into my cart at each store. It was a good thing that I had made an ongoing list or I probably would have never remembered to get everything I needed.

Thursday was the party day for the ladies that I teach. They started arriving around 10:30 and didn’t leave until well after 3:00 p.m. I had ordered some platters and I was thankful that I had, otherwise there would have been nothing to eat. I was not in the mood to crack open cook books. It went well and the ladies seemed to enjoy themselves. A lot of happy faces left me and they cleaned up after themselves.

Friday rolled around and I hungered to play music. I hadn’t had much time to play this week. So I sat in my pj’s and played myself silly. I found a melody line that interested me and was about to put it down on paper when the doorbell rang. Frustrated, I answered the door to my Schwann’s man. This is another valuable resource for those of you who can’t deal with grocery stores like me. Using Schwann’s service, I simply look up what I would like for the week, order it online, and then it’s delivered to me. Usually I’m happy to see the guy, but today I stood at the door with my hair going every which way and in my pj’s. It was 2:00 pm. He wasn’t surprised as he has been with me a while and has delivered food to me when I was worse off. After he left, I went back to my piano and realized that the melody I had in my mind had vanished into thin air. The distraction drove it out of my mind. I was very disappointed because had I been able to get some of it down, it would have helped to lift my spirits.

I realized then that I had better do something with the way I looked. I had a dinner party to attend and my husband was picking me up at around 5:00 p.m. So I jumped in the shower, wrapped a towel around myself and laid in bed for a bit. I considered calling my husband to tell him that I didn’t want to go but for some reason I thought it was a paying event and I didn’t want him to lose the expense of my plate. Later on he told me it was free. Darn!!! As I laid in bed I kept thinking about how I couldn’t keep anything down and I worried that I would embarrass myself. I didn’t take my afternoon pills because I planned on having a glass or two of wine. Try as I might, I could not nap so I gave up and got dressed. I kept telling myself that this would do me good but after attending many of these events over the course of years I already knew what it would be like and I can tell you this much, I was not expecting to have fun. Was I wrong? Nope.

It was nice visiting with some people I had not seen for a bit, but as soon as a half hour into it, I wanted out. There were a lot of people attending and the rumble of conversations permeated my brain. Added to this there was an a capella group singing. The sound of dishes as waiters/waitresses walked around with gourmet trays of hor doevres offering their treasures to everyone also irritated my already beleaguered brain. Those were good; the meal should have been left for the animals outside. Ugh. After about two bites of the main course, I had to leave. It had gotten to a point where if I didn’t leave right then and there, I think I would have started screaming at everyone to shut up. Isn’t that terrible? I get to a point when my brain is overloaded where every little noise is like hearing nails across a blackboard. I had to go. Luckily on the way in the car, I made a pact with my husband and told him that if I gave him “the look”, that he had to take me home. He saw it, recognized it, and made our excuses. The minute I walked out into the cold and quiet night while waiting for him to retrieve the car, I felt such a sense of relief that I nearly cried. I was so happy to see my front door again.

Here is how it is for people with MS. As the body starts to decline a myriad of other complications begin to attack. You can’t exercise the way you used to so you can’t prevent sitting around which doesn’t help conditions like deep venous insufficiency. You are not supposed to sit around too much because it can make it worse. What does a person do who is unable to walk any distance? The bladder problems can lead to kidney problems. The medications and treatments can lead to anemia and even death.

A person with MS dies from complications of MS. Everything we do is at a price. You have to weigh the pros and cons of each thing that you do. Some folks with milder forms of MS do not undergo these issues, but most of us do. Every minute of our day is a time to make decisions. You don’t go about your day on automatic pilot. Everything has to be looked at, thought about, and tried in a simpler and more efficient energy-conserving manner. MS is a difficult disease. It ravages the mind, the body and the spirit. You never know what will happen next. When you wake up each morning it can be with dread. But this is me talking here, and you are getting to know me.

My mantra, “I am not disabled by disability. My disabilities enable me to live a full life but different than yours.” I have to keep reminding myself that. This is not done on autopilot either. I have to work at it. I have to keep going taking each step whether it’s in a scooter, a wheelchair, or with a cane. Little issues to most people are major issues for us. The extreme dread of leaving the house to deal with the outside world has become a new problem for me. At home, I am comfortable because no matter what happens I have built resources around me to help me out. In the outside world it’s very different and I can only rely on what is near at hand and most of the time there is nothing to help. The only thing I can do is opt out and leave even if it’s in the middle of shopping having to leave my shopping cart in the middle of the aisle. Sometimes just driving somewhere to do something is enough to get me into trouble. I get there and I realize I don’t have the strength to get out of the car. Sometimes I even make it to the door and then decide to turn around and go home.

So I am an extroverted person who prefers to live an introverted life. Strange but true. It can’t be helped. But I have purpose and meaning to my life. I make music, I talk to all of you now, and I’ve made incredible friends online. I find the internet an invaluable resource for educational purposes and I find that inside of me is a good person who has found that life is not about what I can or can’t do, but it is about the love I need to give and the love I need to receive. I adhere to keeping positive people around me. This doesn’t mean that people who are ill or have negatives in their lives are not considered a wonderful part of my life, but it’s the who they are inside that I’m talking about. As you know, I can be as negative as the next person, but I know that I am a good and positive person. I know that things will pass and new things will rear up. I know that how I handle each and every new issue is what defines me, not the issues themselves. I’ve learned that in order to love properly that one needs to love oneself first. This a tough one to learn and a tough one to live.

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