Learning to move on from where I am and not from where I was!

I couldn’t pick up where I left off before my last bout with the sun and sun caused illness.
Slowly moving in and out of social networks, commenting, reading emails, making and keeping doctor appointments, getting out and all in all joining in my own life as a contributor and not a spectator takes all my energy and thought processes.  Catching up is too hard so I’m learning to just move on, click the like button on fb on new posts and put recent sicknesses that stopped me in their tracks behind me.  This will be my only mention of it and I’m keeping it light.

I had what they called a hypersensitive vasculitis facial attack from the sun (UV).  I wasn’t just down for the count, I was blasted into an oblivion of pain like even I haven’t experienced in quite a long time. My face and arm itched from the inside and burned as if my blood was boiling from the inside.  After the hives disappeared and the bleeding stopped my face on and under my lupus malar rash became HOT and SWOLLEN.  I looked like someone punched me.  My nerves and every layer of skin were on fire.  I went 3 days until it dissipated enough with steroids that I could talk without searing pain.  A tonage of anti-inflammatories and 60mg of the dreaded prednisone later the swelling went down and the burning under my skin subsided.  I NEVER EVER AGAIN want to go through this.  I’m guessing the appearance of the newly summerized hot Arizona sun and UV in the danger levels precipitated the attack.  Right now I think I’d like to just stay inside the rest of my life.  But I won’t.  Who would?

Here’s a little info on hypersensitive vasculitis from medscape.com:

Hypersensitivity vasculitis, which is usually represented histopathologically as leukocytoclastic vasculitis, is a term commonly used to denote a small vessel vasculitis. Many possible causes or associations exist for hypersensitivity vasculitis, but a cause or an associated disorder is not found in as many as 50% of patients.
Hypersensitivity vasculitis (a form of small vessel vasculitis) may manifest clinically as cutaneous disease only or it may manifest as skin disease with involvement of other organs. The internal organs most commonly affected in hypersensitivity vasculitis are the joints, gastrointestinal tract, and the kidneys. The prognosis for hypersensitivity vasculitis is good when no internal involvement is clinically present. Hypersensitivity vasculitis may be acute and self-limited, recurrent or chronic.

Patients with hypersensitivity vasculitis of their skin may report itching, a burning sensation, or pain, or they may have asymptomatic lesions. Vasculitis of the skin may occur in the absence of any detectable systemic disease. Vasculitis may occur in conjunction with collagen-vascular disorders, paraproteinemia, ingestants (drugs or foods), infections, or malignancy (rare).

I’m prone to severe sun reactions, pemphigoid rashes, porphyric reactions, discoid rashes, hives, necrotizing lesions, livedo reticularis, small spot vasculitis, reynauds, but this is something different.  This is cellular pain (like cellulitis) that effects you down to the core.  It’s horrific.  I assure you this autoimmune reaction is not a sunburn.  I wish it was.  Boy do I.

My body is recovering.  My mind is fine.  I’m not picking up where I left off anymore.  I’m moving on.  Life is too short and too precious.  HUGS!

Over the river & thru the woods to my daughter's wedding I go....

WoW! Our beautiful independent 22yr old daughter is getting married! I spent half the day today packing and the other half resting with an on again-off again 99.9 low grade fever: AKA, Lupus's calling card. Somehow I made it through the packing of clothes, making of sandwiches for the road trip, etc.

I let lupus steal from me the Lupus Walk, which I could not attend, but nothing was stopping me from traveling to see my daughter get married. :) Wish me luck!!!

For anyone else who is traveling with chronic illness, here are some great tips!

From the Lupus Foundation of America:
Traveling

If you are a person who enjoys traveling, you may be worried that those days are over because you have lupus. After all, the stress of travel is just the opposite of what someone with lupus needs when seeking rest and recreation!

But travel can be made easier. Airports today have wheelchairs, motorized transporters, and attendants to help you if you have difficulty walking or carrying luggage. Wheelchairs may also be available at museums and other public institutions. If you have joint pain or any difficulty walking, you should not hesitate to ask for these services, even if you might not regularly ask for any kind of help at home or work. You may also want to look into renting a motorized scooter or wheelchair for the duration of your trip.

Advance airline check-in, including printing out the boarding pass, is another stress-saving technique, and can be done on most airline Websites within 24 hours of takeoff. Some airlines allow passengers to choose a seat in advance as well, whether online or through an agent. Planning a trip in advance greatly increases the chances of getting a seat with extended leg room. Taking a mild sleeping pill can help you rest on long flights. Whether traveling by car, bus, train, or plane, it is important to get up, stretch, and walk around during a long trip, to improve blood circulation.

You should make arrangements to have your prescribed medications available when you are traveling, either by taking your medicines with you, or by carrying prescription orders that can be filled at a pharmacy at your final destination. Medicine can be sent ahead to a hotel or residence, or can be packed in luggage. But because mail can be misplaced and checked bags can be damaged, delayed, or lost, it’s always a good idea to pack at least a two-day supply of medicine in your carry-on luggage. In those instances, it’s important that medications are in their original, marked containers to avoid unnecessary questions and possible confiscation. If the original, labeled medication containers are not available, carry a doctor’s note confirming that the prescriptions are for you. Keep all medication containers together in a clear zip-lock bag to make things easier at security checkpoints.

When making hotel accommodations, you may want to request a room that conforms to ADA standards, such as grab bars for the bathtub, wider access for the shower, elevated toilet seats, and less furniture to allow for wheelchair access.

There are alternatives to air travel and hotel stays. Ocean cruises offer a chance to relax and travel, with a room whenever a nap is needed, readily available medical care, and choices of meal times. Some cruises also are wheelchair- and scooter-accessible. Short bus trips or train rides to areas of interest also offer comfort for travelers. Even local events and day trips can provide the enrichment of traveling without going far from home.

When vacationing, try not to over-schedule your days with too many events, and make sure you set aside time for rest -- just as you do at home.