How many “ologists” does it take?


I’ve finally beaten my flares!  Things should be back to normal, right? Well in the chronic life, it’s seldom normal.  At a recent rheumatologist appointment, I expressed that my spine and hip were killing me.  My doctor gave me a script for physical therapy.  She felt I have tendonitis in my hip.  Turns out my right leg is now longer than my left leg.  I probably adjusted my gait from a flare, and now I’m all out of whack.  Why oh why can’t both my legs get longer so that I can finally be taller and thinner??  LOL  Oh well….  I will now be going to physical therapy 3 times a week after work to help my hip and my “really tight leg tendons”.  I have to admit, my hip has been killing me since the evaluation.  I’m not relishing the upcoming pain of therapy, but I’m determined to get better.

My cardiology appointment went well.  Everything is good and I’ll see her again next year.  I see a cardiologist because my blood pressure was very high for about 2 years.  My primary doctor was always busy, so I saw his PA frequently.  I kept asking about my BP and was told if they put me on any more medicine for it, I would pass out.  I trusted him. Then I started on Actemra.  One side effect is high blood pressure.  I was proactive and made an appointment just to talk about my BP.  I spent most of the visit with the PA’s student.  Then the PA literally patted me on the head and said I was fine even though my BP was 140/90 (on low dose of medication).  Two weeks later, I ended up in the hospital with BP of 200/125.  I learned an important lesson that day.  Stand up for what I believe in and never let a doctor or a PA railroad me again when it comes to my health.  My cardiologist has helped to get my BP under control and I make sure I do what I need to keep it that way!

I also went to see my dermatologist.  I have a skin disease called DSAP (Disseminated superficial actinic porokeratosis) and I get squirted with liquid nitrogen to control these hard little bumps.

DSAP post liquid nitrogen freeze

There have been times when I have had almost 100 removed at once.  It’s like being stung by 100 bees.  It’s not fun, but I hate having these red bumps, so I do through this process 1-2 times per year.  While I was there, I had my annual skin check.  My fair Irish skin spent a lot of time in the sun when I was young.  My dad recently had many issues with skin cancer on his face, so I know it’s good to stay on top of it.  Well, the dermatologist pointed out a mole on my leg and asked if it looked different to me.  Well, it did….like a lot!  This particular mole was flat and tan.  Looked like a large freckle on the inside of my leg, below my knee.  At the appointment, the mole was obviously changed on the bottom and was now dark brown and bumpy.  The biopsy revealed it is not cancerous but it is an “atypical mole” and she recommends that I see a cancer surgeon or a plastic surgeon to get the whole thing removed because I have a higher likelihood of developing melanoma if it stays. So I guess this is the bad side of good news.  I have to wait for the biopsy to heal before the next procedure, and now I have to do skin checks every 6 months instead of every 12.  Could be worse…..but it is just one more thing to have to manage on my defective body.  (I know, I’m being whiney….but today, I deserve it).

So I have to hand it to my “ologists”, they keep me going.  I’m glad I finally have a team of doctors that are not only great at being doctors, they are great at hearing me and my concerns.  Being a patient is a full-time job.  It gets more complex to manage when you have another full-time job in the mix.  It’s getting more and more difficult to be a chronically ill person while working 40 hours a week.  I’ve been working on my plan for the future.  My goal is to work full-time for 9 more years then I will have enough years to take an early retirement.  After that maybe work part-time.  I love my career.  I’d hate to give it up.  I’m also aware that as this rotten disease progresses that I may have to go out on disability.  Whatever happens, I need to get my ducks in a row.  I’m actively take steps to plan my future so that whatever happens, I can take care of myself and my parents.

Oh and a final note….I’ve received a lot of emails asking for updates on my dog, Georgia.  Well, she was officially diagnosed with Chronic Valvular Disease in March.  Her tricuspid and mitral valves are both leaking.  All of this in addition to Syringomyelia and all of her other medical issues (see My dog’s a spoonie, too).  As the queen of “But you don’t look sick”, Georgia still looks completely fine.  Overweight (we’re working on it), but fine.  I closely monitor her diet, but have been lacking on the getting her more exercise.  I’m hoping my physical therapy gets me in better shape to help her.  We were just interviewed by Modern Dog magazine for their summer issue.  I’ll share the link if she makes the final cut.  Thank you all for your kindness towards my sweet girl.

Here is also a silly video of Georgia.  Her new diet means she can only get one Dunkin Donut Munchkin per week.  She is not happy about it.  She is such a silly girl.



I hope you are all doing well and you have all the spoons you need.  Be well and know you are not alone.





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