lupus?? calabassis(?) frog jumping contest

September 7, 2015 at 2:56 am (Uncategorized) (, , , , , , , , , )

froghurrayanimatethe following message came from someone who works with my new primary care doctor.

Hello Sandra, It looks like Tanya has already scheduled your appointment with Dr. Hanley? The ANA is the preliminary blood test that we use to check for a autoimmune disease such as Lupus. This is the reason that we referred you to Rheumatology. We will be more than happy to go over this in more detail when you come for your appointment with Dr. Hanley if you have any additional questions. THANKS and have a great day!

so now i could have lupus?? it might just be the rheumatoid arthritis.  well not likely but i like to think that may be it.  angie looked it up and really there is nothing new that i am not already experiencing.  that is the good news for me i think.

he has gone to bed and now we have our girl time.  we have certain shows we watch that he wouldn’t enjoy.  it is our time to just hang and talk smack frankly.  we also just have this time when we are together and no words are needed.  one of the best things is we have a similar sense of humor.  we know that we would never say these things to others as they might not understand that we could laugh at some of the things that make us cry laughing so hard.

angie asked me about my pain and what happens when i am unable to wake enough to get up.  she wants to understand, she came to our room more than once trying to stir me.  one time she read me an article about washing blue jeans.  her ex boyfriend would tell her he didn’t need to wash his jeans.  my own man has baffled me with this argument for not washing his jeans as often as i would think necessary.  he is otherwise a clean man and dresses very well when leaving the house.  i can remember basic facts of this article, i can remember her voice.  i love her voice! it is so expressive and usually has this hint of laughter just waiting to break out.

i tell her briefly what it is like to lay there and drift off when there is a part of me that screams at this body to respond.  get up….. get moving…. the day is passing and you are not participating.

me- you know what i really think about this new problem? it is much like the frog jumping contest they have in california each year.  you know they line these frogs up and one may start jumping straight ahead while the others may go off in other directions or just sit still and make no move.  well those frogs are my diseases or disorders.  one is congestive heart failure, another is kidney failure and so on with the liver failure, internal bleeding and now we add in lupus.  one of them is going to cross the line and kill me.  we were laughing and imitating those frogs!  then i said – you know i am so relieved to have you here and be able to laugh about this stuff.  as we are laughing she says “yeah, us and our demented sense of humor.”

well i would rather have a demented sense of humor than to be crying over this journey.  now we just have to decide which frog we are going to bet on.  anyone want to place a bet?

as the office worker said in her message, Thanks and have a great day!

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lupus and our take on it

January 23, 2013 at 4:18 am (Uncategorized) (, , , , , , )

after giving this some thought i have to say lupus for me is not even worth thinking about.  most of the symptoms are the same as i am already experiencing.  it did raise some questions for me and after reading a bit of research thought it might help someone else.

maybe we have just been through so much that this seems like a non-issue.  today i had the scans for my carotid arteries, i was able to take a look at it and it seems good.  that sounds like good news and in some ways it is.  i have never had a problem with high cholesterol or any type of blockage in my arteries. this is not what caused my heart condition. actually if i had blockages it would be better.  i could have surgery to correct that problem.  having clear carotids  will not stop a stroke.  so there is just not going to be a surgical intervention.  ah well, it is what it is.

this week i have a dear friend visiting so i want to spend time with her, we also have some friends coming down from indiana for friday and saturday.  think we may be going to heather’s on sunday to meet her new kitty and have a great brunch (if i can make it up the stairs).  guess it will be next week before i go to some local facilities to check them out.  also going to talk to a social worker at the hospital to see what the usual procedure would be for post-stroke.

my love wants to have me at home regardless. it may take some work to help him understand i am not saying a facility is my first choice.  it does need to be on the table though.  there is a chance i could go to a rehab bed for 30 days unless we can get outpatient physical therapy.  then he would have time to get help.  we have talked about hiring someone and give them room and board in addition to a salary.  the best thing is take him with me and let him help get answers to his questions.  i will do my best to make sure he makes it through whatever comes our way with the least amount of grief.

below i am sharing some of the info i gathered. i hope it helps someone.

Definition

Lupus is an autoimmune disease.  It causes the immune system to make antibodies that    attack the body’s healthy cells and tissue.

Symptoms

Symptoms can be mild or very severe. For some people, only part of the body (eg, skin) is affected. For others, many parts are affected. Though symptoms can be chronic, they can flare up and get better on and off.

Common symptoms:

Swollen and/or painful joints

Fever

Skin rashes over areas exposed to sunlight (especially on the nose and cheeks)

Extreme fatigue

Other symptoms may include:

Hair loss

Chest pain, coughing up blood, shortness of breath, difficulty breathing

Kidney inflammation

High blood pressure

Anemia or other blood disorders

Sensitivity to sunlight

Raynaud’s phenomenon

Ulcers in nose or mouth

Swollen glands

Headaches

Dizziness

Seizures

Stroke

Inflamed heart, heart vessels, or membrane surrounding the heart

Blood clots

 

Treatment depends on symptoms

Medication

Medicines for mild symptoms:

Aspirin or other nonsteroidal anti-inflammatory drugs (NSAIDs)—to relieve joint pain

Acetaminophen (eg, Tylenol)—to relieve joint pain

Hydroxychloroquine or chloroquine—to relieve joint pain, fatigue, balding, and skin rashes

Topical corticosteroids—to treat skin rashes

Dehydroepiandrosterone (DHEA)—a hormone medicine that has minimal benefit

Medicines for severe symptoms include:

Oral and intravenous corticosteroids to control and limit inflammation in kidney, brain, lung, and heart, as well as in cases of severe anemia

Immunosuppressive drugs to suppress the body’s autoimmune system

Mycophenolate, azathioprine, and cyclophosphamide for kidney disease or other life- or organ-threatening conditions

Rituximab for refractory disease

RESOURCES:

Lupus Foundation of America, Inc.

http://www.lupus.org/

 

 

 

 

 

 

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all this and lupus too?

January 17, 2013 at 5:32 pm (Uncategorized) (, , , , , )

going to make this one short but will be back later.  so i went to the dr. today and yes i had a minor stroke also known as a TIA.  as we are going over symptoms and some that have lingered for close to a year without much success in getting them under control.  he looks at me and says “i hate to do this but I am pretty sure you have lupus.  we are just going to add some lab work and go from there.”  ok.  i am being scheduled for some different scans to see what my current state of affairs is and now a few more for lupus.

the strange thing is ….. as he was telling me i might have lupus….. i felt like laughing. seriously, i thought …. sure why not lupus?  bring it on buddy i can take it.  so i am going to take a nap and hope for snow.  there won’t be much if any but if i can have lupus on top of all the other stuff maybe i can have some snow.  that seems fair.

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