Domino Effect

A week ago, I was involved in a car accident.  Aside from some muscular issues, I came out of it okay AND my car can be fixed. I can not tell you how lucky I was.  It could have been so much  I'm now feeling about 90% back to normal.  

The good news is no one was seriously hurt AND they can fix my car.  

Why do I tell you all this?  It would seem that my Lupus wanted to get into the act.  Apparently, it was feeling neglected. sigh.

Really?  

I understand that I experienced a traumatic event, but couldn't the flare I'm experiencing coincide with the days I felt crappy from the accident?  Of course not.  I'm achy joints, experiencing headaches and my fatigue level has gone up a notch.  

Don't get me wrong, I am filled with Gratitude.  The entire experience could have been so much worse.  I just wish my body would get its act together.

Realizations

I had a good appointment with Dr. S this morning. My SED levels have dropped, which is good.  They are still elevated, but not like before.  It would seem that our course of action seems to be working.  The swelling around my joints has also visibly decreased. All of this is good.

None of this means I can say 'It is done!'  If anything I have to maintain my vigilance over my choices.  I may never get my levels of energy back that I had.  I'm not going to pine away wishing for lost glory. Instead, I'm going to look forward to what I can do.

We discussed my change of diet.  Dr. S thought I had made a wise decision. He seems to like the fact that I don't go half cocked on anything. I research, gather all my information then make my decisions.

I have to admit that I have been feeling better since I started the vegetarian based diet.  I'm being careful to make sure that I am eating a balanced diet.  I'm not going vegan.  I'm keeping my dairy, egg and fish options open.

I'm proceeding with caution as I manage these new waters. Spring and Summer will be the time to be vigilante for me. I've not done well in the sunshine.  I never have.

This time I can approach this summer prepared.  My life has changed, but my dreams and goals haven't.

My First Lupus Flare

Last summer was hell.  I'll be honest.  I was so miserable, that if I was a suicidal person I would have ended it all. For the record, I am way to stubborn for that kind of action.

I had no idea what was causing my symptoms, every doctors visit left me angry and helpless. My blood work was inconclusive to my general practitioner.  The one ray of hope was that she did listen to me, she never wrote me off as being a hypochondriac.

After exhausting all our options (and taking copious documentation) she sent me to the rheumatologist.  He ran his tests compared them to my previous blood work and started connecting dots.  Then started me on Plaquenil. So far, I haven't felt as crappy as last summer.

Why do I revisit that time?  Because I realized that I was living through a 'flare'.  A long, vicious, difficult flare. The conclusion is, I'd really like to avoid them as much as possible. please.

My other great enlightenment is that Lupus is a highly personal disease, yet, to get the funding need the LFA needs to try to standardize it.  Which I do understand.  The LFA blog just published an interesting article regarding how the result of a 4-year international study has just defined what a Lupus Flare is:

A flare is a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.

I have to give the research teams credit for keeping it as flexible as possible to take in account the individuals that suffer from this disease.

I'm still figuring out my limitations with this new circumstance in my life.  I often push myself to hard and far.  Honestly, I'm stubborn.  I have work to do, goals to achieve and an awful lot of life to live.

I Need A Gun

Maybe that is too bold of a statement.  But in my fantasy, I could shoot myself and put myself out of my misery, then be back when I'm pain free! (I know, totally unrealistic. Who said fantasies were anywhere near reality?)

I'm back to being achy, headachy and miserable.  Really, I think a bullet might solve the issue.

No, I'm not suicidal, I'm just hurting.  I'd want it to be a Groundhog day experience with the ability to control what I got to re-experience.  But, as we all know, it just doesn't work that way. sigh

I can't get back in to see the rheumatologist until Thanksgiving week.  My family is not getting the whole I'm tired, sore, and achy leave me alone thing. And I still have to get up every day and go to work.

I was doing okay for a while the achiness was marginal, just a twinge or so here and there. Now it's back to the 'I feel like I've been beaten by a spiked bat'.  I'm not sleeping well. I can't get comfortable, I toss and turn, waking myself up.  I just don't know what to do.

The last thing I can do is get stressed out about it, but I'm finding it to be a vicious circle.

I'm just going to do my best to just breathe.  Relax, the best I can.  And pray for relief.

And if all fails, find a Nerf Gun and go to town!

'Tis the season .... For the Plague!

Sneezing, coughing, sniffing can be heard across the floor at work.  In elevators, I waiting for that stranger to sneeze without covering their mouth, exposing everyone to their icky germs.  Seriously, what DID their parents teach them as a child.

I've never been a particular germaphobe, but I do know that I have been more susceptible over the last several years to the bug du jour.

As a kid, even a young adult I had a really strong immune system.  I could pretty much survive anything. I only recall getting the real flu once in college. Trust me projectile vomiting in the middle of the sidewalk because I wasn't going to let no stinkin' bug keep me from my mid-terms was a memorable moment in my life.

Now when someone sneezes in my direction, I throw hand sanitizer at them, followed by tissues and a threat of violence if they come any closer (I feel that any jury would find in my favor if it got that far). I'm considering wearing a mask for the next 6 months out in public.  People would avoid me then! :)

That brings me to today.  The annual Flu Shot extravaganza.  I didn't use to get them.  Frankly, the years I got them I seemed to get the flu more often.  Now?  I get them every year.  I usually have a little reaction to them but the end result outweighs the initial inconvenience.

The Lupus Foundation of America recommends the Flu vaccination as well as the Pneumonia vaccination due to the suppressed immune system issues of the Lupus patient.  The key is that the vaccination can not have 'live virus'.  The nasal spray vaccination has this.  So a shot is necessary.

So many people come to work sick.  I'm much more aware of the impact of one cough, sneeze or runny nose.  I can't be responsible for bringing the plague to work. Frankly, I expect the same responsible behavior from the people I work with.

Puzzle of Lupus Teleconference

Just finished with a teleconference with Dr. Philip L. Cohen, M.D., Rheumatology Section Chief, Temple University School of Medicine sponsored by the Lupus Foundation of America.  


He went over definitions, common treatments and possible treatments coming down the pipeline in research.  He had a nice PowerPoint that covered all the major points.


The thing that impressed me was that he stated up front that this disease has a tendency to be fairly individual. While it can be identified as an auto-immune disease, the symptoms any individual lupus sufferer might have may differ wildly.  


Dr. Cohen emphasized how important the relationship you have with your doctor is.  He also talked about how critical it was to be treated with the correct medicine at the right time, and to not be 'over-treated'.  As 'over-treatment' can bring its own set of issues.


Over all he emphasized that despite the flares, a lupus sufferer can lead a normal life.  


For me, as a recently diagnosed lupus patient, I find it comforting that there are doctors who are willing to have open dialogs. I have so much to learn. I know that the resources are out there and I am grateful.

Polka Dots

I'm still polk-a-dotted.  Got a hold of my GP and Dr. S.  Both have suggested suspending my use of Plaquenil for 3-4 days to see if the spots will go away.  Dr. S didn't seem all that positive that it was a drug interaction.  But my GP wanted to make sure.

(Que the dueling banjo music)

The small spots seem to be getting bigger and multipling, the big spots are getting uglier.  The blessing is that so far they are on places in my body that are covered in clothing.

I've stumped the doctors! Woot!  Now I get to go on short term bout of steriods to see if it does anything.  They want to test me for Lyme.  I tested negative for it in two earlier blood tests this year.  No tick has touched this body.  (just the thought makes me gives me the heebeyjeebies)

The bad part is that I'm itching all over and am still dotty.

Test Results are in...

Wow!  I didn't have to call the doctor's office.  They called me bright and early this morning with the results.  The indicators for Lupus are moderate to weak but there.  So I'm catching all this early. Which in my book is good.  But the pain indicators have risen substantially.  Go Pain!


So, we are on to the plan that Dr. S and I have discussed.  I get to try Plaquenil.  And see him in 6 weeks.  (of course being the popular man that Dr. S is, his first available appointment isn't until the week of Thanksgiving, but his office staff has put me on the cancellation list to move my appointment up.)  I also have to get an appointment with an ophthalmologist to get a baseline on my eyes. Plaquenil has several possible side effects (blurred vision, seeing light flashes/streaks/halos, missing/blacked-out areas of vision) and I want to make sure that I'm on top of this.  I like to see.


Honestly, I'm a bit numb about all of this.  This is a game changer in my life.  This resorts my priorities. 


My personal priorities haven't been bad or wrong, I just have to focus my lens.  Sharpen the vision.  Give myself the clarity.  


As I travel this Wheel called life, the one thing I know is that I'm not alone.  What ever is handed me I can take as long as I have my faith, family, and friends.

Let the Adventure Begin

August 31, 2010, I finally got in to see the rheumatologist for symptoms I'd been feeling for a long time.  My GP had been at a loss to explain the exhaustion, over all body soreness particularly in the joints, persistent headaches and the over all decline in my general health.

A second bout of shingles in three years sent me over the edge. I never got over the general feeling of crapiness. After running a full panel of blood work, where my SED's were high and my A&A's were elevated, my doctor referred my to a rheumatologist.

I have to say that Dr. S was great.  He looked at everything. My over all history, an indepth look at how I'm feeling right now and looked at my current blood work.  He didn't discount anything that I had to say to him.  How refreshing.

His educated look at my current status was that I was leaning toward lupus.

I have to tell you that while lupus is scary in its own right, I feel relieved to have a direction to find relief and way to treat my issues.

Dr. S wanted to do more blood work and have his own lab run the tests so he could make a more in depth diagnosis.  We took baseline x-rays of my hands for the arthritic factors.

Mom is in denial.  She doesn't want me to have anything to be wrong with me. I understand that.  But the reality is, have a diagnosis means I can improve the quality of my life.  That is a HUGE bonus.  I can start getting my life back.