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.

Advertisements

Never be Bullied into Snap Decisions

May 13, 2017

One of the main points of this blog is to help people be better health care advocates for themselves. One way to get this point across is to share some of my experiences, and there have been many.

Today, I’d like to share an experience that happened about four weeks ago at a regular rheumatologist appointment.

First, it’s important to realize that everyone has different experiences with doctors. I’ve been very fortunate over the last 30 years or so. My doctors have not only listened to me, they have seen the importance of including me in the decisions being made for my medical treatment. This is extremely important since, in my case, we’re talking about medicines that can have unwanted side effects.

Once a year or so I see the actual rheumatologist (I see her nurse practitioner the rest of the time). Lately, the only way to see the doctor is to also see a Fellow working with her.

I have been dealing with severe, out-of-control rheumatoid arthritis (RA) for the last three years, as well as severe osteoporosis. I’ve tried Avara, Enbrel and Orencia for the RA. None of those meds helped. I cannot take Fosamax or Actonel for the osteoporosis because they make my ulcer (a product of another med I can no longer take) bleed. We tried Prolia infusions and they did no good. I was on calcitonin, but was taken off it after studies concluded long-term use of that med caused a high risk of melanoma.

The Fellow, doctor and I discussed the RA treatments that didn’t work and one that I absolutely refused to take because of the slight risk of an incurable brain infection. I know my body well. I am in the “less than 1 percent” category and I will not take a chance with something like a possible brain infection. I thought I had made myself very clear to the Fellow.

After my blood tests and x-ray of my hands were read, I received an email from the Fellow saying that the Orencia was not helping and I needed to change meds. In the email, she asked if I had considered the biologic I had told her I refused to try. I reminded her that I had told her to her face I would not take it and why. She said I had to come in to discuss the alternatives. I said no. I prefer knowing what my alternatives are so I can do my own research. I made it very clear I would not waste my time or hers talking alternatives until I had done my due diligence. I also told her I refused to be bullied and forced to make a quick decision.

Reluctantly, this doctor told me about Xeljans and Actemera. She cautioned that Xeljans was a daily pill and Actemera was an injection or infusion. She also said it was very possible insurance would not cover either one, where it was more likely the one she recommended would be covered. I reminded her that injections were not a problem, I’d been injecting myself while on the Orencia. I also told her I was not a candidate for infusions for several reasons.

I contacted others with RA and asked if anyone had tried either of the meds. I spoke with a very good friend of mine takes Actemera infusions. It had helped her for about four years before she built up a tolerance. She recently was put on methotrexate (MTX) to hopefully boost the Actemera. I finally made my decision to try the Actemera, but self-inject.

I’d had a bone density scan just before my rheumatologist appointment and that showed marked deterioration of my bones. I asked this doctor what we were going to do about the osteoporosis. She asked me if I’d ever considered Prolia. Hello? We discussed this with the doctor. Those infusions did not help. I told her to read her notes. I asked her what else we could try. She finally got back to me saying that based on my preferences, there was nothing more they could do and I’d have to go to a bone specialist.

My preferences? She really wasn’t listening to me. I cannot take certain classes of these meds because they make my ulcer bleed. I cannot do infusions because of the lighting in the room, the fact that it makes my bones hurt and I’m useless for three days or more and I’m a snowbird. I’m not here in the winter and can’t get treatment through insurance in Arizona. And I cannot pay out of pocket.

So, what lessons can be learned from this experience? First, be ready to speak up for yourself. Don’t let any doctor bully you. Ask questions. Tell the doctor how you really feel. If you’re uncomfortable with something the doctor is suggesting, let the doctor know. This is your body and your life. If you need time to think about treatment, tell the doctor. I’m not afraid to speak my mind and I do. Make sure you are part of any medical decisions being made about you. Do not ever let a doctor intimidate you or bully you into something for which you are uncomfortable. And insist on doing your own research to make an informed decision.

I have made an informed decision on my next course of treatment. We’ll see how it goes.


Congress may be handing me my death sentence

January 20, 2017

We’ll get back to talk about medications in a little bit. Right now there are more pressing issues that need to be addressed here.

Some of the biggest news coming from Washington, DC, and the inauguration concerns the Affordable Care Act, also referred to as Obamacare. There is so much misinformation and confusion about what Congress is doing and what the new president wants to do, which is get rid of it.

I’ll put this out there right now. If we lose the ACA, I’m screwed and so are many others like me. I will not be able to afford health care of any kind, which would lead to a very poor quality of life for me, and make those around me quite miserable, too.

I did not choose to have lupus or rheumatoid arthritis or any of the other chronic illnesses I’ve had diagnosed, nor did I sign up for any of the myriad of illnesses caused by treatment of my chronic illnesses. Doctors are too expensive. Medications are too expensive. It’s expensive to be sick! But I’m sick. There – I’ve said it. I’m sick. In order to have the best quality of life I can, I need to be watched by doctors and I need medications to help slow down the progression of my diseases. Without insurance, I could not afford to live. Think I’m joking? One med I am on costs $4,000 a month. That’s right FOUR THOUSAND dollars a month. Less expensive alternatives have not helped me. We’ve tried. When I add up the costs of all my medications without insurance, I’m looking at an average of $5,000.00 a month just on medicines. Add in doctor visits at full price and we’re talking an annual expense of around $75, 000 or more in medical costs PER YEAR. I don’t earn that much money.

Before the ACA, I was part of the Illinois ICHIP program. That’s the Illinois Comprehensive Health Insurance Plan. It wasn’t cheap and it only covered my illnesses. If I broke my leg, that was on my dime. My health care costs were more than $25,000 a year total – that’s the monthly payment plus what it cost for doctors, blood tests and medications. Without the ICHIP it would have at least been double that, probably more as the medication costs would have been so much higher.

Once the ACA was passed my out-of-pocket expenses went down and the monthly premium was half of what it had been. Then I found out that the State of Illinois passed a law expanding the state Medicaid program and I found I was a candidate for that. My out-of-pocket expenses went down to nearly zero. For once I could stop stressing out about the out-of-pocket expenses I incurred and focus more on living the best life I could with what I have.

Now the Republicans and our new president (and I use the lower case purposely as I have no respect for the despicable man) want to take all of it away from me. The Republicans lied to their constituents telling them that “Obamacare” was a death sentence. They were wrong. However, if they take away my health care it IS a death sentence – for me! Without consistent doctor care and drugs that are basically maintenance drugs, my diseases will take over and eventually kill me much earlier than I’d like to go. My days will be filled with wondering how much longer I’ll live – or really, how much longer I’ll have to live in extreme pain and unable to work at all let alone walk or do anything for myself. My diseases are that bad. And I’m not the only one in this boat.

I’m frightened. I’m frightened that I’ll lose the ability to live a somewhat normal life – or what is normal for me right now. I’m frightened thinking that I may have to live the rest of my days in extreme pain. I’m frightened that the Republicans in Congress will bitch that people like me are not trying to live productive lives and they won’t understand that the reason rests on their shoulders. They are EVIL people.

I’m also tired. I’m tired of having someone else decide what’s best for me – the Republicans who want to take away my health benefits, the insurance companies that won’t pay for prescriptions my doctor orders but instead make me try others first – they aren’t doctors. They never talked to me to see what I’m going through. I’m tired of being tired all the time. I’m tired of being sick. But if the ACA is repealed, I’ll be sick and tired all the time. I already make plans with friends and must cancel many times because I feel so lousy. Imagine never being able to make plans because I always feel sick and tired and don’t want to dump on my friends. Actually, it would be more that I won’t have the energy to go out anyway. What kind of life would I have?

The Republicans and this new president are dangling a death sentence in front of me. What did I do to deserve that?

And here’s a real kicker. Those of you who support Congress’ actions will also suffer. Your premiums will jump up more than they already have. Those of you with employer-based health care will see more of your paycheck going toward premiums because your employers won’t be able to afford to help. Some will drop it completely and you’ll be on your own. Only the extremely wealthy will be able to afford health care. You get pneumonia? Can you afford treatment or a hospital stay without insurance? It’s doubtful. What if you break a leg or an arm? Can you afford to pay to get it set and the physical therapy that follows? Doubtful.

Don’t get me wrong. I don’t wish any ill will on anyone – except the idiots in Congress who want to see me suffer.


Medications

July 9, 2016

If you’re like me, you’re probably on a lot of different medications. It’s important to know what you are taking and its purpose. My rheumatologist in Atlanta insisted I memorize the medications I was taking and the doses “just in case.” The just in case for me ended up was telling a paramedic and then emergency room doctors all of my meds after I fell on a wet kitchen floor and dislocated my elbow many years ago. It served me well again five years ago when I was taken to First Aid at Wrigley Field after being hit in the forehead with a batting practice ball and getting a concussion. Learning what your medications are and dosages really is important!

But beyond that, learning why you are on particular medications is equally important. For example, I am on prednisone to slow my immune system and try to help with inflammation. I am on a vasodilator to help curb Raynaud’s attacks, but I have also found it keeps me from getting migraines. I am on a biologic that is supposed to help slow the progression of the RA. I take a Xanax each night to help me relax because one side effect of long-term use of prednisone is insomnia. I take a super-strength Pepcid twice a day to help manage an ulcer that was caused by another medication I can no longer take. I take Tramadol three times a day for pain management (I wish it helped me like it helps almost everyone else I know). I am on a cholesterol medicaiton because the prednisone caused my cholesterol to go a little high. I take a medication to calm my colitis, which was diagnosed while I was in college, and may very well have been a warning sign of things to come. I take Advair to help me breath better because of horrible allergies, for which I also take Flonase and another allergy pill. And I always have my epi-pen and Benadryl handy in case of an allergic reaction to foods or bites or stings. It’s as lot to remember, but thankfully, even when I have lupus, RA or fibro fog I can remember those meds and why I take them.

Many meds I am on or have been on have been created for other conditions and diseases. In the course of finding out more about chronic illnesses, studies found that medicines normally meant for, say, blood pressure can help control Raynaud’s. Antidepressants can be used to help a person relax enough to be able to sleep at night. You don’t need to be “depressed” to be on an antidepressant. Many of the biologics on the market today supposedly help many different ailments from RA to Chron’s Disease. Chemotherapy drugs, like methotrexate, have been shown to help different types of arthritis, lupus and other chronic illnesses in many people (not me).

Because there are so many types and classes of medications on the market, it’s important for you and your doctor to discuss all of your options. Almost all of the medications have side effects – some worse than others. You should discuss those side effects and decide whether you are willing to take the chance of having one or a number of the posible side effects.

When my lupus was first diagnosed, my doctor had me on massive doses of non-steroidal anti-inflammatories (NSAIDs). When none of those worked, we decided I had to take a steroid. We even tried a chemo drug. When my RA was diagnosed, since I had already been through the NSAIDs, was on a steriod and had already had a bad reaction to a chemo drug, the only thing left was a biologic.

In the coming days I will discuss each type of medication, what each is supposed help and how they affected me. It is my hope that my experiences can help others who are facing many of the same decisions I am still making.


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.


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.


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.