Post 25: It’s a Family Affair

My oldest daughter (age 40) is in the process of being diagnosed with lupus. I’ve suspected for quite some time that she has it but she refused to have a doctor even consider that option until recently when she became so ill she was left with no other choice. The last word from her doc was “We can keep running tests if you want, but I’m pretty sure at this point you have lupus”.

Right now my daughter is insisting on more tests. She’s in denial. I don’t blame her. Who would WANT a lupus diagnosis? On the other hand, when my diagnosis finally came, I had been sick for 4 years and finally having a diagnosis was a relief, albeit a bitter one.

This has put me in a difficult spot. Of course I don’t want my daughter to have lupus. But I also don’t want her dying from lupus or getting much much sicker because she doesn’t want to believe she has it. Any attempts on my part to try to get her to accept it are met with anger, yet, she wants to keep telling me how sick she is, how much pain she is in. Nothing I can say is the right thing. I just keep assuring her she is loved and not alone. It’s all I can do at this point.

Then there was the crushing guilt. That was one of the emotions I initially ran head on into. I gave her this gene. She has lupus because I have lupus. It was a horrid realization. I felt ashamed, full of grief, apologetic. For the most part I have moved past that with the realization that someone in the family lineage passed that gene on to me as well. No one is to blame. We are all victims here.

Her younger brother and sister ( in their early 30’s) were immediately terrified. There were tears. What if they too end up with lupus? They have had several intense discussions about doing everything they can with what little is known about the possible triggers that can activate that dormant gene. They want to bathe in sunscreen, wear hats, remove all fluorescent lighting from their homes. Work to reduce the stress in their lives. Take better care of their health in general. I hope they do those things. I hope they never get lupus.

And, of course, all of this occurred when I was in the middle of a lupus flare. And, of course, the stress of it made the flare worse.

But somehow we will all have to comes to terms with this. We will all have to find a way to get on with life the best we can. I just hope that happens sooner than later because, as a mother and as a lupus victim, this is difficult to deal with.

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Post 24: Ain’t Dead Yet

It’s been 14 years this month since lupus reared it’s ugly head. There will NOT be any celebratory festivities.

I see my last post was 6 months ago when a short remission was coming to an end. That tells you how my summer has been going. It’s been a bad one; one flare after another. But summer is almost over and I’m banking my precious little hope on some relief in the fall.

In the mean time, I’m simply popping in to counter any suspicions I have died. (And trust me, over the last 6 months I’ve had varying feelings about that fact).

Post 23: The Force Awakens

After 6 months without a lupus flare I finally got hit with one. It started a couple of days ago. Actually, it probably started several days ago with an ache here and there that I chose to discount as part of my lupus denial. But then it hit hard….suddenly. I don’t know if they come on that way with everyone, but with me, I’ll just be sitting there on my computer or walking across a room and it will be like I walked right into a wall. It will smash into me with such enormous force and I will go from relatively normal to “Oh my God I want to die” in 10 seconds or less.

It’s like a snarling beast that has been suddenly awoken and is now on a furious prowl, roving through my entire body looking for anything that can, with the wildest imagination possible, be mistaken for an intruding virus or maybe even Ebola. Will it be my heart? My lungs? My kidneys?

No. We are trying something entirely new this time.

This time my immune system, in all it’s biological wisdom, has decided to attack……my eyebrows.

Apparently they have been mistaken for disease ridden caterpillars attempting to burrow into my face and, therefore, must die. So now I have lesions under my brows. So, not having experienced this before, I of course searched the internet to see if this has ever happened to anyone else with lupus. To my horror I discovered indeed it has and, in the one case I read about, the result was a permanent loss of eyebrows! I can only hope that isn’t the case here and at some point my immune system is distracted by other windmills to tilt at and abandons the project.

Post 22: Here’s What I Do

We all know there is no cure for lupus. There aren’t even any good treatments for it. We all know that, in spite of websites written by idiots that claim “with treatment people with lupus live a relatively normal life”….which is only true if you mean relative to being dead, we will probably never again be “well” in the normal sense. But we can be better. It’s usually those first years of lupus that are the worst…..before the diagnosis, before we can get our feet under us and figure out how to best proceed. After that, with a lot of research and a little luck, most of us can figure out what it takes to be the best we can be living with lupus. Our best hope in doing that is to become our own advocate.

I have mentioned here that I don’t take Prednisone. In fact, the only prescription medication I take is hydrocodone for pain and even that at a minimum. Instead, over the years and through much trial and error, I have developed my own regimen of over the counter and herbal medications. Being a science geek, I read scientific and university studies and maintain a healthy skepticism towards any medication, pharmaceutical or otherwise. My goal has been to find the best possible balance between treatment and quality of life.

I did this because I am not impressed with what the medical community offers us for a variety of reasons. The side effects of some of these medications are, in some cases, worse than the lupus itself. More horrifying is that, statistically, the treatments for lupus cause a large (if not the largest) percentage of deaths associated with lupus. On top of that, having been in international business has given me insight into it’s underbelly……one of those things you can never “unsee”…..including that of the pharmaceutical companies.

I’m not rabidly opposed to pharmaceutical drugs. I pass no judgment on those who choose to take them. I have made it clear to my doctors that, should my lupus ever get so out of control that my life is in immediate danger I will take whatever I need to take to stop it, regardless. But, until something like that occurs, I would rather deal with it my own way. So far, my doctors have approved of my regimen. The primary role of my doctors is to monitor my lupus. I cooperate with any tests they deem to be necessary. I’m not a fool. I am aware that, at any point, lupus can go out of control and kill me. They are there to make sure that doesn’t happen.

I am in NO WAY suggesting anyone just stop taking whatever you are taking (especially if it’s working for you). All I’m doing here, because people have asked, is listing what I take and why. For those who are interested in doing their own research into alternative treatment, here is a list of what I use.

Natur Leaf (spelled without the “e” in “nature”) – This is my Big Gun and I only use it when I go into a flare. It is a carefully balanced blend of plant sterols and sterolins. There are other brand names with slight variations in the balance between the two. This one has proven to be the best. There are 20+ years of studies behind sterols and sterolins showing great success and it is used by a lot of European doctors. In America it’s practically a secret because it wasn’t developed by big pharma. It works as well as a prescription steroid but without the side effect. THIS STUFF DOES ACTALLY WORK BIG TIME! This is one I tell doctors about regularly and encourage them to read the studies. When I go into a flare I take 3 of these 3 times a day for the recommended maximum of 2 weeks. It has NEVER failed to bring some immediate relief starting with the first dose and will get a flare totally under control in a matter of days. The only downside is it probably isn’t covered by your insurance and costs around $28 per bottle. It takes 2 bottles to treat a flare. But for me it is worth every penny. The side effects are minimal (I’m not even sure there are any) and there are no repercussions as those found in pharma steroids such as loss of bone density. It can’t hurt you so you might want to give it a try and see if it works for you.

Ibuprofen – I think this is a go to for everyone with lupus. When I’m dealing with pain (an every day thing with lupus) I dance between Ibuprofen and pain pills depending on the level of pain. I don’t take either one on a daily basis as each has it’s drawbacks if taken regularly. If it’s a low pain day I don’t take either one. I believe it’s important with lupus to come to the acceptance of living with a little pain and just learning to ignore it. Attempting to live completely pain free can result in addiction to pain pills which comes with it’s own set of problems.

Hydrocodone – I’m going to have quite a bit to say about this simply because pain medication can be my best friend or my worst enemy. There are a lot of “new” pain medications out there with some really serious potential side effects. Some of them came on the market as “non-addictive” and proved, instead, to be quite the opposite. Some of them are off shoots of various anti-depressants and other neuro drugs with additional neurological effects that have nothing to do with pain. Some are not addictive in the same way simple narcotics are but cause such a backlash if you try to stop taking them that they are actually worse than narcotics. I discovered that doctors rarely do research on these drugs and usually just go by whatever the pharma rep tells them. If it all possible, do your own research from several reliable sources and include the experiences of those who have actually taken the drug. Make informed decisions. Hydrocodone is one of a very few simple narcotic pain pill. It deals with pain. That’s all it does.

I have to say this about pain pills. The WORST thing doctors ever tell a patient that is unfamiliar with narcotics is to “stay on top of the pain”. WORST ADVICE EVER. Here’s why. Our brains like narcotics. So much so that studies have shown, with extended use, our brains are actually capable of inventing very real pain to get more. That coupled with the fact that, with regular use, our bodies build a tolerance to narcotics requiring greater and greater amounts to accomplish the same amount of pain relief. At which point doctors want to take you off them or switch you to some dastardly replacement, primarily to stay off the radar of the FDA. Consequently, pain medication should be handled with the utmost care. Add to that that most prescriptions for pain medication dictate way more pain medication than is necessary to get by. I have not had to increase the amount of pain medication I use in 13 years by following some simple rules.

They are as follows:

1) I Do NOT expect to be 100% pain free. My marker is what level of pain is distracting enough to prevent me from focusing on what I’m trying to do. It would be great to take a bunch of pills and be pain free……for a while….but the price isn’t worth it.

2) If the pain is only somewhat distracting I try Ibuprofen instead.

3) I found the LEAST amount of pain medication I can take to get the pain back to the “non-distracting” level. After trial and error I discovered, for me, that is only a surprising 2.5 milligrams. That amount has continued to work to the same level for 13 years. On the occasion that I am in a flare and the pain goes over the top I can double the pain medication and still only be taking 5 milligrams and it will work well. I can do this because……

4) I don’t take pain medication every day. Period. If you do you will build a tolerance and suffer withdrawals if you try to stop taking it or, it stops working. Also, as I mentioned earlier, once your brain becomes accustomed to having narcotics on a regular basis it can create pain for you. And, lets face it, not having pain is great. If you had some injury or surgery that will produce pain for a short period of time, none of this would matter. But we LIVE with chronic pain. So we are left with the choice of either trying to live pain free and risking the myriads of problems associated with addictive drugs, or we can settle for learning to live with some pain and having the ability to control it when it becomes to much without consequence. I usually only take pain medication a day here or there. Rarely do I take pain medication more than 1-3 days at a time before I stop it for a few days. Better to have a few days of pain and be able to control the drugs rather than being controlled by them. Our brains don’t know whether the amount we are taking is prescribed. Our brains don’t care. Taking pain medication “as prescribed” doesn’t prevent it from becoming a problem, In fact, the way some doctors prescribe it it guarantees it will.

5) I can be “on top of the pain” or be on top of the drugs. Doctors operate under some notion that the longer you wait to take pain medication, the harder it will be to get the pain under control. That may be true with extreme pain like immediate post-operative pain but it’s NOT true with chronic pain. It has never mattered how long I waited to decide I need pain medication. When it kicks in, it works. In fact, I wake up in pain almost every morning. Some mornings it’s bad. But, I will almost always wait a few hours before I decide what I may need to do about it…..if anything. I found, for me, just getting up and moving around, or getting focused on something else will, more often than not, result in less pain, sometimes substantially so. If two or three (or more) hours have passed and the pain is still significant then I will act on it. It’s never required more pain medication because I waited. It works the same.

Again, I’m not judging anyone. We’re all just surviving this thing. I just know doctors can fail miserably at keeping us informed …or even being informed themselves. We have to take care of ourselves and be our own informed advocate as much as possible.

Magnesium – As with everything else, I don’t take this regularly. I have found it useful when my muscles decide they will not relax no matter what I do. This doesn’t happen often, but when it does, this seems to work for me.

Pro-biotics – People with lupus are more prone to Candida overgrowth. Terrifyingly, due to the lupus damaging the blood brain barrier, it can actually move to our brains! I take pro-biotics to keep this under control as much as possible. I’m currently unsure if it’s enough should Canadida set up shop in the brain but it might prevent that from happening. So far, it seems to mostly just attack my digestive system. When it does I use pro-biotics and drink Aloe Vera juice (sans additives). That has always worked so far.

Antacids – I have been diagnosed with GERD. Initially doctors prescribes the usual pharma drugs for this and, after reading everything about them, I decided against them. Like most things I have been diagnosed with, they all come and go, depending on what my immune system decides is the enemy that day. If I took drugs regularly for everything I have been diagnosed with, I would be a walking pharmacy. But, over the years, I realized that, unlike a normal person with any one of these things, they are usually temporary and then the lupus moves on to something else. When I go through a bad spell of GERD it can get out of control fast. I mostly deal with it by temporarily drastically adjusting my diet, taking an antacid (as irregularly as possible), drinking aloe juice and………what seems completely counterintuitive……taking Ibuprofen. I know, crazy right? But it has worked more than once, especially if I catch it early. I decided to try that based on the theory that what might be happening is I get a little acid reflux going and then lupus, like it often does, decides to turn it into a BIG EVENT by cranking up inflammation. Apparently, I was right about that.

Wild Blueberry Extract – There are several scientific studies showing Wild Blueberry Extract to do a couple of amazing things. The first being a greatly lessened amount of damage done to the brain of a stroke victim if they had been regularly taking Wild Blueberry Extract prior to the stroke. The second being evidence that Wild Blueberry Extract can reverse brain damage. Considering that I am at high risk for stroke and because of the nasty things lupus is capable of doing to our brains, this one is a no-brainer (excuse the pun). My own experience with it has been to see a noticeable improvement in cognitive ability when taken regularly over a period of time. It can be somewhat costly though so I don’t usually do that. Wish I could. I may try to be more consistent with it in the future. It’s well worth it.

GABA – This is my go-to when the seizures want to start acting up or when I have panic attacks. Right now my new neuro has begun a series of tests to figure out just exactly what is happening in my brain. It could be vascular (Yikes!) but (and what I like about him) he isn’t willing to just prescribe some medication without knowing just exactly what’s really going on. So far, I have found a LOW DOSE of over-the counter GABA can very often stop them before they start really getting worked up. As for panic or anxiety attacks, like everything else, they are not something I suffer on a regular basis. They will sometimes come out of the blue, last several hours, and then disappear after a single event. Sometimes I will have several events over several days. Either way, my assumption is they are lupus related. After reading up on anti-anxiety meds I decided I didn’t want to do that to my brain. Anxiety sucks but it isn’t damaging my brain. If it gets bad, GABA will usually tone it down to tolerable until it passes. (NOTE: I realize that some people have a much larger problem with anxiety attacks on a more regular basis which can be crippling and require greater treatment. I’m not judging here at all). GABA should not be taken on a regular basis because, like drugs that act in a similar way, over time your brain will compensate by naturally creating less GABA, perpetuating the problem. By only using it when necessary, I get that increase when it’s needed without effecting my brain’s natural production.

Taurine – Taurine has proven to be effective with seizures. I don’t like the way taurine makes me feel so I only take it as a “when all else fails” solution. It’s not a one shot remedy but has worked the few times the seizure activity has gotten out of hand and I have to take it over a couple of weeks. But I do always have a bottle on hand just in case. It’s important to note here that I only have Simple Partial Seizures and usually mild ones.

Some additional things I take on occasion:

DGL – enzyme that helps digestion .

Omega 3 – Good for the brain and other things

B Complex – Good for stress among other things

That’s pretty much the list. And, as I said before, this is what I do and why. If any of this helps you, great! But what you choose to do has to be decided by you. Obviously I have great compassion for anyone with lupus and am in support of anything any of us can do that helps and increases our quality of life. After much study and a LOT of trial and error, this is the combo that works for me so far. Hope it’s helpful.

Post 21: The New Normal

I’m in the process of building my own house.

I had someone else build the basic exterior shell and I am finishing the rest, including an addition I put on. This was my compromise between my dream of building my own home and a disease that said I couldn’t. I only require help when a project requires and extra pair of hands or lifting something heavy.

That probably seems contrary to everything else I’ve written on this blog. And, truthfully, if someone had suggested I would build my own house a few years ago that would have seemed an insane impossibility. But this is part of my “new normal”.

Once the dust settled and the realization fully set in that, short of a miracle, I will live with lupus the rest of my life, I had to decide what that life would be. I have been sick now for over 13 years and after years of negotiation have I only recently made some sort of compromise agreement with it. I will live as much as I can, when I can, any way I can.

That doesn’t mean I have done away with those days of anger and resentment, depression and hopelessness. That doesn’t mean the days/weeks of being bedridden with flares are over or that I will EVER be “fine” again. Nor does it mean I am even close to finished with bitching about lupus. But I did the math and realized that, of the time I have left in life, a good part of it has already been ear-marked by lupus as time I will waste just surviving. There’s nothing I can do about that.

But I decided damn if lupus would also own the rest.

My work on the house is inconsistent. I do what I can when I can. UV sensitivity requires me to do the outside work in the winter and the inside work in the summer. It’s tricky to find days where the lupus and the weather are in agreement on what days I can work. Especially since weather alone can effect lupus. I have broken the job up into up into reasonable size projects per month and do my best to stay on schedule. Right now I’m running a month behind. I have learned to not dwell on what I can’t accomplish or failed to accomplish and just keep moving ahead.

My “new normal” has required me to take a long look at what I had hoped to accomplish in my life and what I may be reasonably able to accomplish. My bucket list has been shortened to accommodate only the things that mean the most to me. The first to go was anything that would require me to commit to something that had time restraints or would require me to do something regularly or on a specific day or time. Lupus is too unpredictable for that. In fact, the only reason I was able to maintain my business as long as I did is because there was some flexibility on when I had to work. But in the end, not enough.

It has taken years of trial and error (emphasis on “error”) to learn how far I can physically push myself without setting off a flare. I have learned to work with consistent pain. I still sometimes miscalculate. This is especially true when the STOP alarm goes off when I’m so close to finishing something I have been working on. It’s difficult to resist the temptation to push on through and finish it. I pay dearly when I try to do that.

But when I am out there working on the house and utterly engaged in what I’m doing it feels, for a while, like I own my life again. I have concluded this is the only way to live with lupus. To designate spaces of time and activities that belong to me alone and not the disease.

Post 20: An Army of Doctors

We all have them. It takes an army of doctors to not really do much about lupus.

Having (finally) been approved for disability, I now have my own army. It took a bit of effort to find the right doctors. I “fired” a couple along the way and had one “fire” me. But, in the end, I feel comfortable with the bunch I have now. For me, their primary purpose is to keep track of how I’m doing and to be there for those occurrences when lupus decides to go for broke on some vital organ.

The best part of having my own doctors is being able to bypass the accusations of “drug seeking” and hypochondria and questioning the lupus diagnosis I used to have to go through every time I landed in the emergency room. These doctors all know I have lupus. So, hopefully, the next time I end up at the hospital we can all bypass the BS and get down to the business of figuring out what hellacious thing lupus is doing to me now.

My current army consists of:

An Internist

A Nephrologist

A Neurologist

They made the cut for several reason including the ability to actually LISTEN and to operate under the assumption that I, the person who has lived with this disease for over 13 years now, might, at least part of the time, know what I’m talking about. All of them INCLUDE me in the discussion and work WITH me. Consequently, I’m more inclined to listen to them as well.

My internist is still looking for the right rheumatologist for me. Apparently, for some reason, it’s difficult to find a rheumatologist to treat ANA negative lupus. I don’t know why. It only requires doing the same barely helpful things that are done for ANA positive lupus sufferers. I had exactly one appointment with a rheumatologist. Among all the things I disliked about her there was one primary test she failed. This is a test for doctors people with lupus come to know if you want good doctors.

Do they ask the right question? What questions a doctor asks can reveal more about what they do or don’t know about lupus than anything else.

Regardless of how little doctors seem to understand lupus this doesn’t seem to deter them from believing they understand lupus. It didn’t take long for me to realize that you can learn more by just Googling “lupus” than most doctors know about lupus. (I’ve also come to the conclusion a lot of doctors don’t know how to Google). Rheumatologists are particularly sticky because the power that be just decided they would be the specialists responsible for dealing with us……whether they know anything at all about lupus or have ever previously treated anyone with lupus. And they seem to know one thing…..Prednisone.

I’m sure there are good rheumatologists out there. Some of you have probably lucked out and found one. But I long ago realized that, when it comes to lupus, I am my only advocate. And, having had to live with this nightmare of a disease, I have made understanding it and keeping up on all the research and knowing as much as I possibly can a priority. That and, of course, actually experiencing it, has made me more informed than most doctors. So my opinion MATTERS in the discussion.

Back to my rheumatologist experience….

This lady is supposed to be a very sought after doctor that I should have felt extremely grateful I managed to get in to see at all. Her poor bedside manner was notorious so I was prepared for that. What I WASN’T prepared for was her idea of an “initial consultation”. Now keep in mind, this woman had at her disposal ALL of my medical records for months prior to my appointment. However, she wanted to go through MY ENTIRE MEDICAL HISTORY from when my symptoms started all the way to the present……in order…..in detail….by date.

I don’t know about the rest of you but I don’t even know what today’s date is most of the time. Nor can I remember what was going on 2 weeks ago. In fact, the first 4 years of lupus, prior to it finally being diagnosed, are pretty much a blur of doctors and tests and hospitals and a mountain of wrong diagnosis and so many things going wrong at the same time it seemed my body was just imploding.

I’m capable of remembering pretty much every terrifying new thing lupus has done to me but even that is a list I would have to compile over days simply because it’s doubtful I would remember it all at one sitting. What order they went in or what year which thing occurred…….not happening. Not even close.

Anyone who understood lupus would know that.

But that didn’t stop her from putting me through THREE GRUELING HOURS of what felt like a police interrogation. AND we were doing this under bright florescent lights with me barely out of my last flare. I expressed my concern about the lights. She ignored me. I was pummeled with one question after another without mercy. I started feeling that, at some point I would suddenly stand up and yell, “ALRIGHT! I DID IT! I’M GUILTY!”. I reached the point when the oft repeated question of “what year was that?” was just answered with “2005”.

As time went on I was getting sicker and sicker and extremely fatigued. I was making up any old answer to her questions I was now barely hearing just trying to survive this nightmare. This was interspersed with homicidal ideation and thoughts of how much I wanted to be in bed. I began to plead with her every half hour or so to PLEASE let me go home and go to bed. I know I had to really look like hell by then. But she pushed on. She wasn’t interested in anything I thought or felt. Any interjections I made between questions were ignored. THEN came the physical exam.

The physical exam was comprised of only this. She would poke someplace and say “Does this hurt?” She did this about 30 times. Finally I said “Look. It hurts everywhere. Not just in some specific point you poke at.” She ignored me and kept poking.

FINALLY we were finished. Next she informed me she wanted me to bring her a PRINTED copy of my medical records (as opposed to the thumb drive copy which was already loaded on her computer and as opposed to the hard copy already there in the office she shares with my internist.)…..none of which she had apparently even glanced at. THEN she says IT.

I wonder how they came up with the diagnosis of lupus for you”.

What? WHAT??? You mean the 10 or so doctors that, after running a bajillion tests, have diagnosed me with lupus….. including the doctor the disability people sent me to who was supposed to not diagnose me with lupus? Is that the “they” you are referring to? Did she miss the part where, besides the negative ANA, I am like the fricking poster child for lupus?

And you know, this is the edited version of the event. I left out the insults and the chastisements. (Just how IS IT I could afford to have a mastectomy and reconstruction but couldn’t afford to go to a doctor for lupus? …..This because I told her the mastectomy occurred in “2005” when it actually occurred in 2000…..2 years before the lupus appeared…. and I happened to be insured at the time.) I left there knowing I would NEVER return.

For now my internist has decided I’m doing Ok without a rheumatologist and we will revisit this later if necessary.

Post 19: I’m Back

It’s been a while since I’ve posted. Oddly, just yesterday I thought about this blog and pondered posting again. Whether anyone reads it or not I think it helps me to write it. Then I woke up this morning to a new comment from someone telling me my blog helps them. I guess maybe I see that as a “sign” I really should start posting again. So here I am…..for what it’s worth.

There’s a lot to catch up on so I will probably post a lot over the next day or two. Right now I’m still trying to get caffeinated enough to be able to do that. I shall return.

Post 18: Feeling Overwhelmed and Need Feedback

I ended up in the emergency again a couple of weeks ago, primarily because my legs didn’t want to work right. They kept me there all day and ran a zillion tests including 2 MRIs and 2 different sets of blood tests (among other things). Here is the list of things they diagnosed me with:

Final: OTHER MALAISE AND FATIGUE
Final: SYSTEMIC LUPUS ERYTHEMATOSUS
Final: PAIN IN JOINT INVOLVING PELVIC REGION AND THIGH
Final: Chronic kidney disease, unspecified
Final: EPILEPSY, UNSPECIFIED, WITHOUT MENTION OF INTRACTABLE EPILEPSY
Final: Spinal Stenosis of Lumbar Region without Neurogenic Claudication

And we can add to the the previous diagnosis of Bradycardia and Lupus Pericarditis.

It just keeps piling on doesn’t it.

Last week I had an appointment with my neuro who expressed deep concern that I had not started taking the Gabapentin she prescribed. (I DID get the Rx filled, I just haven’t started taking it yet.)

She gave me a big stern lecture about how dangerous the type of seizures are that I have and how they are usually a prelude to a much bigger even….even a potential stroke. And I get that I’m at an even higher risk because my father had seizures and strokes. I know that. I get that.

But everything I read about this drug really makes me NOT want to take it. When I expressed these concerns she just brushed them off and said I should be more concerned about stopping the seizures. I AM concerned about that. But, having already had my quality of life so severely minimized by lupus, I can’t help but hesitate in taking anything that might make it worse, especially when we are talking about cognitive effects. My body is already pretty worthless. My brain is all I have left and, being a total geek, that’s more important than anything to me. I’m concerned that doctors, who in general seem to not really understand lupus, never take lupus into consideration when prescribing drugs for other issues…..even when they are caused by lupus. I mean, as far as I know, in all the studies done on Gabapentin so far, not one of them was to test it’s effects on people with lupus…..especially those with brain lesions. Plus, It’s not supposed to be taken with hydrocoden which I sometimes take for pain and there are warnings about not taking it if you have kidney problems…….all of this which my neuro knows I have.

Frankly, if it effects my short term memory (which lupus already has to some degree) and (God forbid) according to some newer studied, possibly prevent the formation of new connections in the neural pathways and cause fatigue, I’m not seeing a good outcome on the “quality of life” front.

I only recently managed to escape the whole suicidal depression thing and am surviving on a tenuous spiderweb string of hope. I already go back and forth as to whether what is left of my life is worth living!

On the other hand, having a stroke would be right up there in my list of worst nightmares….worse than any concern about dying.

Why I’m really writing this post though is to ask if any of you are taking (or have tried taking) Gabapentin and what is your experience/opinion of it?

Post 17: The Flu…..Really?

It’s often said the one advantage to having lupus is your immune system will kill anything else that comes near you. Except, apparently, the flu.

I am just getting over the flu. It was horrid to say the least. I have no idea what my immune system was busy doing but it was NOT busy attacking the flu virus. It was preoccupied with killing my hips for some reason. So while plastered to my wet sweaty bed I was in additional agony with severe hip pain.

My fever was really high and at times I would awaken disoriented, my head racing with dark incoherent thoughts. One early morning I fell into a fitful sleep and dreamed I made the decision to commit suicide. The decision seemed so logical and the immense relief I felt at having made that decision was so all encompassing it bordered on joy. It was as if a great weight had lifted off me. I was at peace.

Then I woke up.

Upon waking that decision didn’t seem as final as it had in my dream and the result was a state of utter despair. This has given me a lot to think about.

In the mean time, I’m now in that aggravating place of being too well to stay in bed and still too sick to do anything else; My otherwise slowly progressing recovery from the flu marred by the inevitable belated lupus flare. (Oh NOW you want to get all tough!)

Post 16: Update…Not Dead Yet

Wow…It’s been over 7 months since I posted here. A lot has happened in that time. One of the most significant is I moved to another state and ….of course….suffered a rip-roaring flare as thanks for doing that.

On the health front, I have two new additional diagnosis to bitch about. I now have stage 2 kidney disease and seizures. The only good thing I can say about that is I now have a really good Nephrologist and an equally good Neurologist. As anyone with lupus knows, good doctors can be hard to come by, so I’m grateful for that. I’m still looking for a good general practitioner and rheumatologist, preferably one who actually knows something about lupus.

Part of the problem is I am one of those (theoretically) rare individuals with (so far) ANA negative lupus. Because of this, every time I have to change doctors (for whatever reason) I go through the same time wasting, frustrating, annoying process.

1) They challenge the diagnosis of lupus (and want me to be happy about that)
2) They run a whole batch of tests I have already been through countless times.
3) The ask the same million questions
4) They conclude I have lupus.

…….even when they have in their possession over 12 years of medical records and history and repeated diagnosis of SLE. I have come to just expect this now and try to just deal with it. It’s hard enough living with lupus without having to argue with my own doctors about it. I just know they will get there eventually. They always do.

According to statistics, about 30% of individuals with a positive ANA are either perfectly healthy or have diseases other than lupus so a positive ANA doesn’t necessarily mean you have lupus. On the other hand, only a small percentage of people with lupus will have a negative ANA.

That’s the statistic I sometimes challenge with doctors. Because, it seems to me, from a scientific perspective, that could also mean that a lot of people with lupus could be misdiagnosed as not having lupus simply because they are ANA negative. Because, unfortunately, so many doctors are so completely ignorant of lupus that, regardless of the symptomatology and other criteria, they will never diagnose lupus without a positive ANA, making the statistics rather like a self-fulfilling prophesy. In other words, only a small percentage of people with lupus will have a negative ANA if you are only diagnosing a small percentage of people with negative ANA as having lupus…..regardless of their symptomatology and other criteria.

Recently though, I have been running across more doctors who hold the same suspicion so their may be hope yet.

While on the subject of statistics…..

I keep reading that only about 1.5 million people in the US (and 5 million worldwide) have lupus. But it seems that almost everyone I meet either has lupus or knows someone with lupus. I haven’t tried to figure that out mathematically. The numbers could be wrong…..or…….maybe it’s one of those “6 degrees of separation” things. In fact,  maybe whether or not one personally knows Kevin Bacon should be added to the lupus criteria.

Speaking of criteria…..they need to come up with a new list.

Everywhere you read that lupus is “difficult to diagnose” because the symptoms vary so greatly from patient to patient. Yet, those of us who have lupus have no problem whatsoever finding a wealth of common ground. Some of us may have different additional diagnosis. Some of us may suffer with some specific manifestation more than some …..or less with another. But I have found on lupus message boards and anyone I have met with lupus that, for the most part, we all suffer, to a greater or lesser degree, most of the same stuff. I think if they actually talked to people with lupus, asked the people who actually live with this disease, they would find a literal goldmine of very specific and common symptomatology.

None of this was what I set out to write about on this particular post. I’ll just have to get back here soon see if I can manage to stay on task for once.