The tradeoff with meds

October 22, 2020

I’m binge-watching old “ER” episodes. I loved that show. Some episodes hit home more than others. One episode showcased two African American doctors who were pulled over because they resembled the descriptions of two multiple shooting suspects, though their car didn’t match the getaway car. One officer shoved one doctor to the ground and “restrained” him by putting his foot on the doctor’s neck and head. This episode . . . from the mid- ‘90s . . . sent chills down my spine.

Another episode centered around a young kidney transplant patient who also had seizures. Her regular doctor put her on a new anti-seizure drug known to cause kidney problems. It worked great on the seizures, but the transplanted kidney wasn’t working properly anymore.  One of the ER doctors suspected the new medication and conducted an online search to see if there were similar cases. He found three but suspected more.

When he confronted the doctor who had prescribed the new med, he found out that this doctor knew it had the potential to ruin the new kidney but went ahead and prescribed it because it was so great on seizures. Yes, it had helped get rid of her seizures, but it also ruined the new kidney.

Discontinued meds, some of which I’ve taken, were mentioned in the show. One big one was Vioxx. I was on Vioxx many years ago, but the FDA pulled it from the market after learning it caused serious strokes and heart attacks. I know the FDA did the right thing by pulling it, but for me, it was a wonder drug that fought the debilitating pain caused by my lupus and arthritis.

Cases like these make me wary of what is happening today with possible treatments and vaccines for COVID-19. There is a rush to get the vaccine and meds on the market, but there is no way of knowing long-term effects of these treatments.

It seems like meds that help treat one symptom are catalysts for other problems. For instance, I had to stop taking one osteoporosis drug because studies showed long-term use was connected to a high risk of cancer. Another arthritis med gave me a massive stomach ulcer that will never completely heal. Other meds I have either tried or considered also have the potential to cause cancer or serious harm to organs and other parts of my body.

It’s all about making informed decisions and what you are willing to risk to find relief. I’ll get into this more in the next few columns.

Have you been faced with deciding between a drug known to help one issue but also known to have the potential to cause other issues?

#medicines #lupusmeds #arthritismeds #ER


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.


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.


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.

 


Accepting life with Lupus

April 30, 2016

Coming to terms with my lupus was not easy but I have always been a person who sees the glass as half full. Just about everything about my life had to be changed. I needed naps and took them. I had to cut back on a busy social life because I had no energy. I stopped shaking hands with people because it hurt too much.

Before getting sick i had grand plans. I was going to live in Chicago, have a career as a sports writer writing about the Cubs, go to all the Cubs home games, play tennis and eventually get married and have kids. Lupus seemed to have stolen all of that away from me. I had to move from Chicago because winters made me very sick. I was told by my doctor not to have children, it could trigger a massive flare-up that had the potential to land me in the hospital. I could no longer play tennis. I moved from most of my friends and my family and was forced to start life over. I’ve met some people who wallowed in self-pity. I saw it as another adventure.

In the 20 years I lived in Atlanta I worked, got married…. and divorced, made new friends and got involved with the Lupus Society of America – Georgia Chapter.  I started freelancing as a way to take better care of myself, and was never at a loss for assignments. I wrote about computer hardware and software, swimming pools and spas (and got to interview Esther Williams). I wrote about fences, security systems and shopping mall construction. I also edited publications in the HVAC arena and a couple of medical publications. At one point I saw an ad for a freelance environmental writer. I applied and within four months was promoted to freelance news editor. It kept me busy for more than six years. I got to tour such glamorous facilities as waste treatment plants and drinking water plants. I toured Lockheed where the big military cargo planes are built and a huge Budweiser facility in Cartersville, GA, to see how they were “environmentally friendly.” I also had a tour of the Savannah River Site facility in South Carolina. I got security clearance to tour the area where nuclear waste was turned into glass. From there it would be shipped to caves within mountains in the west. That was fascinating. I was meeting new people and learning so muck. I covered the environmental aspects of the Super Bowl when Atlanta hosted it in 1994, and also covered the environmental impacts of getting ready for the Olympics, which Atlanta hosted n 1996.

In 1994 there was great flooding in Georgia, just south of Atlanta. I had gotten a call to join the governor of Georgia in his helicopter to tour the most badly hit areas. As I was leaving for the airport I got a call that I had been bumped from the flight by then-President Clinton. Bill still owes me an apology for that! My position at the paper put me in direct contact with top Georgia officials from the governor and various city, state and U.S. officials, to the top officials for the EPA and EPD, (Georgia Environmental Protection Division). I was never at a loss for stories. These people called me. It was great fun, easy writing for me, though much of it was technical, and I ran myself ragged. But I kept going because I loved what I was doing.

It was during that time that my doctor asked me to take a class and get certified to teach a lupus self-help class. His theory was that I would be a great person to help newly diagnosed people and show them how I was living with my lupus. I took the class and met others who were living with much worse cases of SLE than mine. At least mine wasn’t affecting my central nervous system.

I enjoyed teaching the class and I learned a whole lot more about lupus and realized I really had accepted this awful disease. I learned that you do have major losses, which I’ve mentioned and you need to mourn those losses. Everyone mourns differently. Mine losses seemed huge to me but my mourning period was short because I had living to do. The most important thing I learned was that inherently I knew I had to prioritize my days. I would have students make lists of what they needed to do the next day and then prioritize what was on that list. I did the exercises with them. I realized I was already doing this subconsciously.

I found my passion for hockey reemerge and became passionate about greyhound rescue and cruising. That cruising passion led me to a job with cruiscritic.com where I was community supervisor, which meant I answered questions, made sure everyone was following the Terms of Service. I organized the first on-land cruise get-together and led the first Cruise Critic group cruise.

But I was always exhausted. Looking back on it, I was prioritizing my life, but still doing way too much. I’d feel like I could do things, like write three articles in a week for different publications, but then I’d hit a wall and couldn’t move. I never went out of my flare. I was envious of those who went into remission. I never did.

I became extremely good at predicting tornadoes. Tornado pain is much different from heavy rain pain or even snow pain. One night I felt a big tornado. The Weather Channel was showing it on the ground moving directly toward my house. I got the dogs (three greyhounds at that time) and half way down the basement stairs I felt the thing shift direction. I slowed down, let the dogs out and sat by my pool while I waited for the dogs. It was an eerie thing – very quiet and still but I knew I was okay. The next day the weather casters were talking about that tornado. It did shift directions and took aim on two huge apartment complexes. It demolished one of them – two miles from my house. My husband was not happy when he found out I let him sleep through it all, but I told him there was no need to wake him. I was sure and I was right.

For a while I was editor for the Alabama and Georgia editions of a magazine called “Nursing Matters.” Once a month I had to go into the offices to do the layout on their computers. We were owned by the same company that owned The Weather Channel and we shared office space with those employees. One day I was waiting for a fax when one of the on-air guys from the beginning walked in to send a fax. We were talking and I asked him the rain chances for that day. He told me less than 5 percent. I told him it was going to storm within the hour. He looked at me and looked outside where it was sunny and there were no clouds in the sky. He thought I was nuts. Forty-five minutes later he found me at my desk and told me I was better than their computer models. It was storming.

While living in Atlanta I also started a real estate investment company. I bought foreclosed homes and rehabbed them and sold them. I kept one as a rental and turned it into a Section 8 rental. I wanted to help those who needed help. I did very well with that company but it finally became too much for me physically.

It may sound crazy, but all of these things I did, and more, would not have happened if not for the lupus. Am I happy to have it? Hell no. But I never would have had the experiences I did if I’d stayed in Chicago. I just figured out how to work with the lupus. I thought I was able to take care of myself, but I was still getting really bad flares.

In 2002 things started getting really bad again. I was having problems with my left knee, and was falling. I was always tired and had no energy. I gave up the real estate and my position on the Georgia Real Estate Investors Association  board of directors. I had knee replacement surgery in 2003 on my left knee, and at that time had my right knee scoped. I was told I’d need that one replaced within a year. Well, that didn’t happen. I got divorced and got really sick. My house was way too big for just me, caring for three dogs and a cat was overwhelming. I was really sick again. I moved back to Chicago with the help of my family. I found homes for my three dogs (two greyhounds and a little mini-lab/beagle mix rescue) and brought my cat back to Chicago with me.