Emotions of Lupus

Managing Real Life and Lupus

Dear Diary,

It’s been a while since I’ve written. Managing life with Lupus after my appendicitis in February has proven to be a challenge to say the least.

Just after that, we learned that the owner of the house we were renting planned to put it up for sale at the end of our lease in June. Thankfully, they gave us nearly three months notice to decide if we wanted to buy it or if we just wanted to move. Either way, this news surely was the last thing I wanted to think about when I had so much going on with my health.

Meanwhile, we had to plan a trip to see my niece graduate from college in May. I was so nervous about traveling because it always seems to have a detrimental effect. During the trip, I was exhausted, and I had trouble breathing that heavy, humid East coast air.

Then, once we returned home, it got even worse. I had to go to the doctor for pain medication and they said I had a full-blown Lupus flare. This means that I had too much inflammation in my body, which caused all sorts of pain in my chest, legs, hips, and back. I also had trouble breathing, fevers, and exhaustion. I think the trip was just too much for me.

It would have been nice to be able to really get some rest after all that, but it wasn’t to be. After returning home from the trip and getting pressured by the landlord’s real estate agent, we made the decision to move in June. So, in the few weeks before moving, I had to deal with packing and endure the visits of potential buyers looking at the house. That would be difficult for a healthy person, and much more so for a Lupus patient.

We got through it, but moving day was the worst. We found an apartment, and I insisted that we take one on the second level so that we wouldn’t be bothered by noises above our head. I quickly found out that walking up stairs was painful and debilitating. At one point on moving day, I was midway up the stairs, and my body wouldn’t go any further. I couldn’t move my legs at all. Hubby had to pick me up and carry me the rest of the way. All I could think was, “Oh my goodness, what have I done?”

Since then, I’ve been getting back to managing my health by getting established with a whole new cadre of specialists. I found myself sending this e-mail to Hubby so that he could keep track of my latest appointments:

Hi Baby,

Yesterday and today, I finally made my appointments with the various doctors I need to see. Here’s the list for you:

Dr. V (Hematologist) — 08/20/2013 at 4:00 pm
Dr. H (Colonoscopy) — 09/12/2013 at 8:30 am
Dr. S (Hip & Back Evaluation) — 09/19/2013 at 10:30 am
Dr. S (Teeth Cleaning) — 09/20/2013 at 10:00 am

I also had these appointments already scheduled:

 Dr. N (Allergist) — 08/19/2013 at 10:30 am
Dr. T (Rheumatologist) — 09/03/2013 at 9:00 am
Dr. G (Internist) — 12/10/2013 at 12:30 pm

Those are just the doctor appointments, and these do not include my ongoing physical therapy appointments twice a week.

It’s been one heck of a busy summer, and I’m still working hard to feel better. My doctor is doubling my dose of medication to see if it helps at all. Managing this disease along with the challenges of real life isn’t for the faint of heart.



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