Limited mobility can be isolating

July 12, 2017

I recently attended my 40th high school reunion.  There were so many activities planned for the entire weekend, I had to pick and choose what I wanted to do, or rather could do. This was the first time in a long time that I really wished I didn’t have RA and lupus. They kept me from participating in the bike tour of my hometown. I can’t ride a bike anymore.  I can barely walk most days. And I couldn’t do more than one activity a day, though the first night I did go to a junior high get-together and then a larger party with others. I was absolutely exhausted when I got home.

The main event was on Sunday at a local brew pub. Everything I attended was fun, don’t get me wrong, but because of my limited mobility I didn’t get to see many people I had hoped to see.

I sat down almost immediately after arriving at the reunion near the entrance so I could see who might be walking in. Also, a couple of friends went up to some people to tell them where I was. I’m sure they were thinking I was lazy or something, until they saw my cane. The Miriam they knew could walk around easily.

I learned some lessons at the reunion about being sick. First, it can be very isolating when you are unable to move around freely. Unless people are specifically looking for you, you probably won’t see many old friends. Some people didn’t know how to react to me with a cane. Some thought I was using it because I had sprained my ankle two days before the reunion. I had posted a photo of a badly bruised and swollen ankle on Facebook. My old friends were very tolerant of my situation, at least those I saw. I learned by watching these old friends that able-bodied people seem to take their mobility for granted. Someone like me can only watch from the sidelines.

A few of my old friends were very accommodating, coming to sit with me and chat for a while before moving on. I really appreciated that.

While I had fun at the main event, I had more fun the night before in the smaller group. Talk was easier and my limited mobility didn’t seem to be a problem for any of us. Plus, we had 40 years of life to catch up on.

There was also the issue of my energy level, or lack of. I left the reunion about an hour before its intended end. That was okay with me. I was tired and hurting.  As it was, when I was leaving, I bumped into two other old friends who wanted to chat and there was no place for me to sit. I finally had to end the conversation because I just couldn’t stand anymore. I’m hoping they didn’t think I was being rude. I would have loved to have stayed and chatted more with them. RA and lupus had other ideas.

I’m a positive person, so it was a shock to me that I was a little sad after the reunion. This was one time that the RA and lupus really got in my way. I suppose I could have gone up to people and reintroduced myself, told them I have a medical issue and asked them to come sit down and talk, but I didn’t think of that. Plus, getting up and down would have tired me out much more quickly than sitting and hoping to see people.

There really is no good way to go about seeing people at a large gathering. My high school graduating class had about 1,200 students. I was told around 230 or so of us were at the reunion.  That’s a lot of people. And some of us brought significant others with us.

The next reunion will be in 10 years. I’m guessing that my limited mobility will be less of an issue as many of us will have other medical issues.

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Posted by miriamromain77

More on fatigue and chronic illnesses

June 8, 2016

Yesterday I talked about the fatigue that comes with RA, lupus and other illnesses. I received a number of private emails and some text messages from friends who told me that they don’t know how to make others understand how bad the fatigue can be. It’s a tough one to explain.

When I feel the fatigue, like I did yesterday, it’s pretty obvious I’m extremely tired, but it’s more than that. As I said yesterday, the fatigue can be debilitating. That’s not an exaggeration. By the time I had finished making dinner last night I had broken a glass trying not to drop and I could barely make it up the stairs to go to bed – at 8:30.

Fatigue is one of the most common symptoms of chronic illnesses. Healthy people do not understand that this isn’t being lazy and it isn’t “just tiredness.” It’s so much more than that. It’s a tiredness that gets in the way of everything. Some people cannot physically move because the fatigue is so bad. Walking, even a few steps to the bathroom, can require extreme effort and cause the person to need a nap – sometimes in the bathroom.

I get fatigued from time to time – like yesterday. I have had problems walking just a few steps. When the fatigue sets in, all I want to do is sleep, and sometimes that’s difficult because I’m also in extreme pain, which won’t allow me to sleep. It’s a vicious cycle. Everything hurts more when you so extremely tired, you can’t move. This is where I was last night after dinner. I somehow got myself upstairs and in bed, but did not have a restful night, which I was hoping to have.

Everyone deals with fatigue differently. I try to get more sleep and I make sure I rest for at least a day or two after I start feeling a little better. For me, today was a “lazy” day. Yes, today I am being lazy. I stayed in bed until 9, set up delivery for one of my meds, went through my emails, finished a project I started months ago, wrote half a Cubs column and I’m writing this while watching the Cubs game on TV (they’re in Philadelphia today and for that I’m grateful since I doubt I’d have been able to handle just getting to Wrigley today).

Yes, this is lazy for me. Really lazy for me is staying in bed all day and that wasn’t possible because the house was getting cleaned today so I had to be up. Even though I’ve done some work and gotten a lot accomplished, I have stayed in my office, except to get something cold to drink. I have almost everything I need in here for the day – two coffee makers and coffee, my computer and a television to watch the Cubs.I am not moving around much on purpose and this has helped. I no longer feel fatigued, I just feel somewhat tired. And I’ll take this “tired” over fatigue any day. And to help myself further, I canceled today’s plans with a friend and also tomorrow’s plans.

I was asked to offer some suggestions on how to convey to healthy people what fatigue really is and also what healthy people can do to help those who are experiencing fatigue. This isn’t easy.

I tell friends and family different things about my fatigue depending on how close we are or how much those are trying to understand what is going on with me. For the most part it’s a debilitating tiredness that enhances pain and reduces energy to the point where I can’t do anything. I will tell them about not being able to walk to the bathroom. I will even tell people that there are days, like today, where I don’t think I could make it to Wrigley. Most everyone I know gets it when I say that because I try not to miss any home games. There were days last year where I got to the games but struggled to stay awake during the games. That’s extreme fatigue. I also tell people that when I experience extreme fatigue I can’t write and I certainly am not well enough to drive my car anywhere let alone try to think clearly.

Healthy people who want to help a person experiencing extreme fatigue need to ask the fatigued person if there’s anything they can do to help. If you know a chore needs to be done, you can take it upon yourself to do it without being asked or waiting for the fatigued person to get around to it. You can offer to make dinner or order in. If the fatigued person says he or she needs nothing but rest, honor that statement and let the person rest. You can check in on him or her once in a while offering something to eat or drink, but give that person some space. Those of us who experience extreme fatigue on a regular basis know what’s best for us and sometimes it’s just being left alone. Also, keep in mind that the fatigued person may be experiencing “brain fog.” This is well documented. It’s really hard to think straight when you’re so very tired and in so much pain. Sometimes the best intentions contribute to the person’s fatigue rather helping as intended, so understanding, patience and compassion are greatly appreciated.

I’d love to hear how others deal with their fatigue and how they try to convey it to healthy people. And I hope this post makes sense since – I make no guarantees.

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Posted by miriamromain77

Sometimes you just can’t move

June 7, 2016

Having a chronic illness means sometimes you just don’t feel well and you just can’t do anything, or not as much as you usually do. Such is the case with me today. I had intended to try to write a blog entry at least every other day, but the past 11 days have been very difficult for me and writing here was last on my list of priorities.

What was so important that this blog was put down as my last priority? For me, 10 baseball games in 10 days and then having to write about the games. But I even prioritized that. Instead of writing every day, I actually started the column 11 days ago and put it in draft form. By the time the home stand was over, I had decided to sum up those 10 games using some of what I had already written. I deleted some paragraphs and brought the column up to date and published it last night. For me, it was a throw-away column, just something to have up there since I hadn’t published anything in almost two weeks. That throw-away column was promoted to another site for which I write – it was a “Spotlight” piece.

I’m very glad I did that last night because today is not a good day at all. Everything hurts, my fingers are swollen, typing is very difficult and I’m exhausted. I get days like these fairly often, especially when I’ve pushed myself too much for too long – like going to 10 games in 10 days and then exchanging a Croc Pot for one that actually had all the pieces I needed and then going to Costco. That did me in.

This is a common occurrence with RA, as I’m finding out through an online support group. Sometimes the pain and fatigue are so bad I just cannot do anything. This is where prioritizing what needs to be done on any given day is so valuable. Today’s priorities were getting out of bed, putting groceries away after my boyfriend returned from shopping and then not pushing myself.

There are people who might feel like I do today and might immediately call their doctors. I’m not like that. I know, after so many years of ups and downs like this that all I need is to take it easy, take a nap if I need to and not push myself. Tomorrow may still be a rough day, so I’ve left a message for a friend who was supposed to come over telling her I needed to cancel and asking if we can get together next week. I don’t need a doctor to tell me to rest. And I will not increase my prednisone, even for one day, to help with the inflammation I’m experiencing. I’ll tough it out like I always do. I reserve the right to call my doctor and increase the pred, but it’s not on my agenda.

I am very lucky. I have very understanding friends and family. They may not be happy with me for canceled plans, especially  last-minute cancellations, but they have been understanding and helpful. I feel badly for those on the online support group who say their friends and family do not understand and call them lazy. It’s hard to make someone understand you just can’t move. It’s not laziness. It’s pure pain and fatigue and it can be debilitating.

And on that note, I’m going to go and take a nap.

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Posted by miriamromain77

Doctors are not gods

May 4, 2016

I’ve seen so many doctors and for a while actually hated them. Part of that was because no one could figure out what was wrong with me, but the biggest thing was that to me, they all seemed like they thought they were gods. Whatever they said was the final say. That did not fly with me. I must be part of the discussions and decisions being made. It’s my body. I know it better than anyone else.

Now more than ever it’s important to advocate for yourself, as health care workers are being pressed by insurance companies and their own hospitals, etc. to see more patients. Getting facts you need to help make informed decisions is imperative. I’ve told a few doctors off over the years because I felt they just weren’t listening. I’m very tired of hearing that medicine is not an exact science. I get it now, though I wish that wasn’t the case.

I’m quite fortunate to have doctors that want my input and work with me and really listen to me. My rheumatologist and her nurse practitioner want me to be part of all decisions and are very willing to answer all my questions. My internist is wonderful, as well. She presents me with options, I do some research and ask her questions. She will tell me what she thinks, but always defers to me for the final answer. We work together.

There are still doctors out there who do not involve patients in the decisions. And that’s really the whole point of this site. I don’t know if it’s because I’m a trained journalist, a curious person by nature or if it’s a combination, but I always have questions. The nuurse practitioner and I have only gotten into one argument, and that was not too long ago. She wanted to put me on methotrexate when we learned I have RA. I’ve been on it already for my lupus – twice. It makes me sicker. I’m in so much pain I can’t move. But since that was years ago when I was in Atlanta and she had never seen my reaction, she tried to force it on me. I told her I refeused take it. That is one med I will never try again. She was exasperated. She talked to the rheumatologist, which she always does, and gave me three other choices. I looked into all of them. Humira and Enbrel were on the list – both in injection form. So was Avara, which was a pill. I decided to try that first. I gave it four months and it didn’t work. So, I looked at the other two and chose Enbrel as it seemed to be less toxic than Humira.

Sadly, the Enbrel had the same effect as the methotrexate. I got much worse. I had pain where I’d never had it before – my lower leg. My internist sent me for a Doppler because I had classic symptoms of a blood clot. No clot. The nurse practitioner sent me for x-rays. Nothing showed up as out of the ordinary and my knee replacements and all the hardware, especially in my left knee, were looking good. The pain in my lower leg was some of the worst pain I’ve ever had. For eight weeks last summer I was barely able to walk and certainly couldn’t drive. Yes, I made it to Wrigley. My wonderful boyfriend would drop me off at our VIP gate and someone would meet me with a wheelchair. One day a friend saw me struggling to get across the street and brought the chair to me in the middle of Waveland Ave. in front of the firehouse. Everyone was looking after me, as I found out later.

The extreme pain I was in started while I was in Arizona. My internist and I would discuss my pain level and she eventually prescribed mega doses of two different pain killers. Neither touched the pain. When I told people what I was on, they were surprised I was functioning. I should have been high or something. But everyone reacts to drugs differently. I will tell you that I will not take morphine again. The one time I had it was when I dislocated my elbow. I was talking to an intern about medical issues as some of the nurses had recognized me from my editorials in the nursing magazine I was editing at the time. When he looked at my chart he told me that I should have been out of it because I had so much morphine in me. I told him it was only barely easing the pain.

When I went off the Enbrel, the pain started to subside. Imagine that. And then I found out that the pain in my lower leg was actually from my right hip. There are six or seven places where you can feel hip pain, it’s not always in the hip.

A second hip x-ray showed extreme progression of the RA in two years. The rheumatologist told me I had to get on something. She explained what was available and what she would recommend, but I was to have the final say. Again, I was given information to read and also looked the meds up on the web. I ruled all three out — one I had tried and it did nothing, one was too much like the Enbrel and the third had a very small chance of causing an untreable brain infectionj and I tend to fall into the “less than 1 percent of the patients who take this drug experience …” category. I know the doctor was exasperated, but she listened to my explanations and concerns and then suggested Orencia. I wasn’t keen on some of the side effects, but I was willing to try it. .

I participate in an online RA support group. I see so many times where people have just done what the doctor said to do without asking questions. You HAVE to be part of the discussion and decision. Medicine is not an exact science. You have to know your own body and how it reacts to certain chemicals and other stimuli. I hear about friends who get various diagnoses and I ask questions they never thought of. This is where I can help others. I know what types of questions to ask, first of the patient then of the doctor. It is my hope that this blog and what I am going through will help others. And I’m always happy to help out, though depending on the situation, there may be a small fee involved.

As you read this blog, I ask again that you remember I am not a doctor or nurse, nor have I had any medical training. I write from experience and hope that what I share will help others.

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Posted by miriamromain77

Something else is wrong….

May 3, 2016

As I’ve said, I was pretty sick when I moved back to Chicago in November 2004, almost exactly 20 years after I had moved away. I was not used to the cold Chicago winters. I was living in my dream condo, after leaving my dream house. I was up on the 40th floor of a condo on the lake. My view was north and northeast. I set up my home office with my desk facing the sliding glass door so I could see my lake. On very clear days I could see Milwaukee with my binoculars. And I could always see when things were happening in Evanston, where my parents still lived.  I loved the condo and was so glad to be back home.

But there was a huge problem! My lupus was acting up and I had to try to get other medical issues caused by the lupus and various medications under control. I never felt well. I finally had my other knee replaced and seven weeks after surgery I was in Mesa, AZ, at spring training. That was a miraculous recovery!

There is no cure for lupus. You treat the symptoms. I’ve come to terms with that. But while treating the symptoms, the side-effects of many meds have caused other medical problems for me.

 

 

Over the years I’ve learned to listen to my body. I’ve learned to live with extreme pain. In fact, I can’t remember the last time I was pain ree. That’s kind of sad. But I do live with it. When the pain is really bad, I will resort to taking a pain killer, but try not to. Many people think I try not to use pain killers because I don’t want to get addicted to them, but that’s not really the case. I don’t have an addictive personality. The real reason I try not to take pain killers is that I need to have what I consider a baseline for pain. I have a very high pain threshold – most people would not be able to live with what I consider tolerable. If the pain level increases, I know that the weather is changing, it’s getting really cold or I’m going into a flare. Pain is one way your body tells you to slow down.

Sometimes listening to my body was taken very literally. There was the day I predicted rain to The Weather Channel people. I have loads of stories like that. But one that always makes me smile is the evening I was on a cruise with a group of girlfriends. Four of us were sharing a suite and one night we were sitting on our balcony having some wine and talking. Suddenly I announced we were heading into rain. How did I know? My knee was telling me. From then on, I was asked what my knee was saying. It was almost like it had a life of its own. It served me well when one friend and I were walking on St. Martin and I knew some rain was coming in. Each time I felt a wave of rain coming, she and I would duck into a bar for an island beer.

After all these years I know what normal lupus pain is for me, so when I started having unusual (for me) excruciating pain in my hands, right hip and other places, I knew something else was going on. I also had a terrible tingling in my right hand and arm that was not only annoying but increasingly painful. It was not as bad in my left hand and arm. I’d had a hip problem for a few years. Two years ago an x-ray was done on my right hip and it showed arthritis. No one seemed concerned. A few months later I finally had a test done on my hand and arm, which showed nothing – or rather, no injury. I knew there was no injury. I knew something was wrong.

I needed to make my doctors understand that I was going through something very new. My fatigue was impossible for me. I had no energy. I was in REAL pain. So, my rheumatologist sent me for an ultrasound on my right hand. Of course, it was a day when my pain level was down to tolerable and I figured nothing would show. I was wrong. There was a lot of inflammation in my hand, which was quite visible on the ultrasound. I was diagnosed with Inflammatory Arthtitis.

The next step was to find out whether or not I had Rheumatoid Athritis. When the tests came back even I knew the answer. Rheumatoid Arthritis. A normal rheumatoid factor is between 1 and 14. Mine was a whopping 192! But I got a triple whammy. Not only did I have lupus and new diagnoses of Inflammatory and Rheumatoid Arthtiris, but I was also diagnosed with a hybrid called Rupus – a cross between Rheumatoid Arthtirs and lupus. It attacks the connective tissues for the most part. Ah ha. The original diagnosis of Connective Tissue Disease from 1985 was correct, as was the diagnosis that the lupus was attacking my connective tissues. Another x-ray was taken of my right hip to compare with the one from two years before. This time it showed extreme progression of the RA. My rheumatologist said I had to get on something to at least slow the progression of the disease. She recommended three meds and told me to make a choice. She gave me information and I looked a lot up. I had already tried two different meds – one did nothing, the other made me much worse, so I had to really think about what was going on.

Big life changes were occurring and I needed to get a grip on what was happening so I could figure out and mourn more losses. It was time to dig out the course material from my lupus self-help classes and give myself a refresher course.

 

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Posted by miriamromain77