Fighting the Reality of Disease

Fighting the Reality of Disease

Part I of V

The First Diagnosis:

About 15 years ago, I learned I had Lupus.  The doctor stated at the time it was a very hard disease to actually diagnose, and then once you find you have it, it is hard to treat.  Up until this year, I had denied the reality of me having Lupus.  I would not succumb to something I could not see, hear, touch, or smell.  I did not want to be treated as if I was weak, not as strong physically and mentally to conquer whatever came my way.  Growing up with knee problems, I already felt handicapped in many ways as I couldn’t run like other kids, and many of the normal activities done by adults were extremely hard, if not down right painful.  Admitting I had a real disease was not an option for me. 

 Misinformation:

Four years ago I was hospitalized with blood clots.  At the time, the treating physician stated she found no Lupus, but did find I had Factor V Leiden.  This is a rare blood disease which causes the blood to clot more than average.  I have to be on blood thinners for the rest of my life.  Having the physician state Lupus did not show up on her tests, reaffirmed my position of denial.  I have since found out this is a common problem.  Hence the poster:

Fighting the Reality of Disease

Part II of V

Me, a Leper?

For a period of time, I continued in denial.  It was just easier this way, and I was dating.  I had a very real fear of suitors finding out I had Lupus and then treating me as a leper.  I did not want to be shunned, since Lupus is not contagious, yet I also didn’t want to share in my pain fears either.  During this time I met a very nice woman who had Lupus as well.  Once we had an afternoon to chat, with no interruptions, I found she had many of the symptoms I did, and some I did not.  At the end of our conversation, I remember feeling very sad for her, but did not personalize any of what we had shared. 

 The First Smack in the Face:

This last year I have discovered there is no hiding from something which grows, and is determinate on your life’s activities, including my daily job. 

As a Paralegal I must spend many hours at the computer, typing, researching, and reading off the screen.  At night, when I had to type all day preparing pleadings, my fingers would hurt so bad, it would take two or three days for the pain to subside, and this was only if I didn’t have to go back the next day and continue typing for hours.  My fingers would feel like they were crimping up, looking like an arthritic person’s hands.  Many nights I would lay in bed, just waiting for my pain medication to take over, as I couldn’t move my hands in a comfortable position, and couldn’t sleep with the pain.  It took a long time for me to finally start taking any kind of prescription pain medication.  Prior to the discovery of my Factor V Leiden, I had taken Aleve® or something similar to relieve bone pain.  Now, being on the blood thinner, I was limited to Acetaminophen.  I was also enjoying the additional pain of carpel tunnel in my left hand.  I was down to wearing a really stiff brace on my left hand during the day, and a somewhat less restrictive one at night.  I was consuming acetaminophen way more than the bottle suggests in a daily dose.  So, I finally requested something for the pain, and being allergic to Codeine, my doctor called in the least amount of Hydrocodone.  

I was having more of a problem with fevers and a sore throat, as the work was getting more stressful, and I was getting older.  Again, I found some relief with the acetaminophen for the fever and throat pain.  The doctor could suggest nothing more, because, by the time I would actually be able to get into see him, pending my work schedule and his appointments, I would usually have figured out a means to deal with it.  I sincerely hate going to the doctor or any medical facility, and if I can figure out a way to just deal with it, or self treat, I will.  One weekend, it was a beautiful Saturday morning, I was preparing to have breakfast with my mom and then tend to some errands which I had not felt up to handling all week; I realized why I was not to take anything other than acetaminophen.  As I was preparing to leave the house, my nose started bleeding profusely.  It was downright gory.  And, since I also broke my nose years ago, I was not able to do the ole’ pinch the nose trick to get the bleeding to stop.  I had to lie on the bed for about an hour; feeling and tasting the blood go down my throat, until I felt the bleeding had stopped.  My day was ruined as I was apprehensive all day about getting too far from home.  Just for good measure, I also changed into a black t-shirt and black pants. 

Upon notifying my oncologist, he was very upset I did not go to an emergency room upon this bleeding event.  I explained the circumstances prior to the event, and the doctor wanted me to keep a thermometer at my desk and take my temperature many times throughout the day.  This was a problem since I am with clients during much of the day, and I had no real privacy.  People would continually ask if I was feeling okay every time they would see me taking my temperature.  I did not want to be seen as weak or sickly, so I stopped taking my temperature except for when I was at home. Back to my routine of acetaminophen and just dealing with the problems.

I was fired from this job for, at least this was the story I received, being forgetful about filing documents, and generally not remembering a lot of things.  I will admit, I had been having some doubts as to my memory prior to this, but upon consulting with doctors and friends, I was consoled by the age theory.  Then I had a slight fear I may be getting Alzheimer’s early in life; I was only 43. Now, as I look back on the events and at how much medication I was taking at home and at the office, my memory might very well have been affected. 

 

Fighting the Reality of Disease

Part III of VThe Second Smack in the Face:

The event which finally led me to recognize I had Lupus was a two and half week trip in a “big rig.”   I had decided since I was unemployed, I would check out obtaining a Commercial Driver’s License (CDL).  In doing some research on the profession of truck driving, I hooked up with a driver for his time out in July.  Although I could not drive, I did experience what the lifestyle is really like, and did learn quite a bit of the daily activities of drivers. 

At first, things seemed fine.  I was learning, doing my school work on my laptop, and was actually helping the driver with the computer part of his job and some of the required paperwork.  Then the fever started.  I was not able to get much sleep; in fact, I figure I was only getting 2-3 hours of sleep each twenty four hour period.  I was not able to sleep while the truck was in motion; it was just too damn bouncy.  When we would stop, I appreciated the driver needed to make sure he was well rested, as our very lives, and the lives of others on the road depended on this.  I would let him sleep on the bed while I was up front, sitting up-right, watching a movie, reading, or doing a discussion in my Master’s class.  This shortly became real old, and the fever became worse and worse.  Acetaminophen was not helping after a while.  The stress levels rose on the trip as the quarters were very cramped, my dog which I brought with me had stopped eating anything but human food, and the driver was having real issues with some of the loads. 

On July 18^th, things came to a head, per se:  the driver was in a convenience store and I was waiting in the truck.  I realized I needed to go to the bathroom before we took off again, got down from the truck, and headed for the store.  I suddenly lost consciousness, and found myself all skinned up and laying in front of a truck.  This was no small issue; if the truck would have moved forward to leave, as he was not fueling, he would not have seen me lying there, as I was on the right side of the truck, directly in front of the tires.  In fact, had he left while I was there, he may have never known he ran over me one way or the other, as the truck is so large, and my head is just a small melon in comparison.  You can safely assume this did not happen, as I am here writing this all down right now. 

What did happen, in my opinion, was worse.  I believe I bruised a rib real bad on my right side, hurt my right arm while trying to break the fall I had no real clue was happening, scuffed up my right calf pretty good, and took a chunk of flesh right out of my right foot.  My left hand was scratched up, and my left arm also hurt as if I tried in vain to stop the fall with this arm as well.  Oh, yeah, I also hurt my stupid right knee which already has issues.  I do not remember even a thought of knowing I was going to fall, just walking, and then being in pain.  No one saw this whole exciting event, and so I gathered myself together, left the chunk of flesh though, and went into the store.  I really don’t remember much more of this time period.       

A day later, I realized how bad I had hurt myself.  My foot hurt where I was missing part of me, and my arm and rib hurt severely.  I was so exhausted by this time; I was willing to try anything and anytime to sleep.  Whenever I would try to sleep while the truck was in motion, every bump we would hit would send tendrils of pain through my side.  Although I was taking my blood thinner, I was showing signs of anemia as well with yellowing eyes.  I was in seriously awful shape.  I knew then much more of this traveling and I would be in the hospital. 

I had given up on any attempt to sleep while the truck was in motion, and realized I would only be able to sleep every few hours when the driver slept as well.  It was awkward, as we had to sleep head to toe, but few a couple of merciful hours I was actually able to sleep.  This sleep deprivation was occurring even with the assistance of sleeping pills, which in a normal life would have knocked me on my butt. 

Circumstances changed when the driver had a family emergency in California.  Whereas he was thinking we would stay out longer than the three weeks we had originally spoke of, he was forced to come home a bit earlier.  I was so thankful; not that his family was having this emergency, but that I would be able to get home sooner.   The driver’s role in all the events will be totally unrecalled as it is a whole emotional roller-coaster unto itself.

Upon my return, I pulled the muscle or bruised it again, as it started hurting worse than the original pain.  I spent the next two weeks basically resting, lots of time in bed, and doing the absolute minimum of daily activities.  My side finally stopped hurting, and most of the marks from this awful experience are gone; but as Lupus goes, we are slow to heal, so I still have a sore on my foot (maybe I should have retained this missing flesh instead of leaving it on the ground).  Reflection of this whole trip made me finally realize I HAVE LUPUS.  I have also had to recognize I cannot do everything, and I have more limitations than I previously thought.   I investigated Lupus groups on MySpace, and have met some very wonderful people who have helped me with this realization.  My thoughts on going to the doctor haven’t changed, but at least I know where to look when I am having a new problem, or a flare of the old issues. 

 

Fighting the Reality of Disease

Part IV of VToo Damn Independent for My Own Good:

What seems odd to me is the fact which stares me blatantly in the face:  Every time I would have a new physical ailment, the one place it would always, without fail, show up is under Lupus.  As a stubborn individual, I choose not to accept this, and tell myself it was just coincidence the symptom fell under the same disease over and over. 

 The Cost of Realization:

My Mom has now been diagnosed with Lupus as well, and she is a good patient and goes to the doctor frequently for treatment.  She also has insurance.  I, on the other hand, have not had insurance for almost a year now.  The treatment of Lupus, at least for some of us, requires specialists.  While having insurance, I did see a Rheumatologist for Restless Leg Syndrome, which she told me, would get worse, and when it did, I was supposed to go back to her.  It has gotten worse, but I haven’t been back.  The office visits alone are upwards of around $200.  My regular physician’s office visits are $125.  The only way I can I can see a specialist or my regular doctor is to pay cash, or if I qualified for Medicaid/Medicare.  I cannot qualify for Federal assistance as I am not disabled or 65.  I do qualify for blood testing through a special clinic which works directly with the prescribed medication for blood thinners.  I have also qualified for patient assistance for my blood thinner.  I have also discovered because of having the Factor V Leiden, I cannot get life insurance.  At this point in my life, I am not ready to, nor do I think I would receive, Social Security Disability.  I have a very dear friend who is the same age as I, and she has had to file for Disability because of severe back issues.  She has an independent stubborn streak as long, if not longer, than mine.  This whole affair of her having to go to doctors, finding she cannot do the same work she has done for years, and wait for someone else to make a decision on your income, has been very humiliating to her.  She is way worse off than I, therefore, I do not think I would even get in the front door. 

Fighting the Reality of Disease

Part VConclusion

To be very honest with you, I do self medicate much of the time.  I find much of the pain subsides for a while if I drink a shot of whiskey.  The fevers lessen if I have a Cosmopolitan, must be the vodka, and the cranberry juice can’t be bad either.  I have not taken to drinking excessively, and do not drink to get drunk, just to give me a break from the physical ailments.  On the flip side, since I have been unemployed, and not had the daily demands on me, my fevers have lessened considerably and my hands seldom hurt as before.  I have not had to take nearly as much acetaminophen or pain pills as well.  I do fear though what will happen to me if I do have to go back into being a paralegal, as I feel my condition has not gotten better, just been relieved for a time. 

One might question if there would have been a difference in my condition had I secured treatment earlier in life.  Perhaps, but I wonder how many people are diagnosed with a disease as vague as Lupus (Mesothelioma, Fibromyalgia, etc.) and deny it until it screams for attention.