ABOUT

Type A with R.A.
Love, Sex, and Living with Rheumatoid Arthritis

This is a very candid personal diary/journal written by Sasha , a thirty-something, hard charging executive type with some serious medical issues. It’s written with a nom-de-plume so as not to affect her clients or jobs. This site is about positive change&actions rather than just complaining.

This is also a site for people who have to be a caretaker for loved ones with chronic illnesses. Sasha is the one with the diseases – Jax is the caretaker. No relationship is easy, but they are so much more complex with this added dynamic.   Sasha&Jax hope you’ll gain healing in your life by reading about theirs.  This is the one major goal of this site.  We’ve added the category “couples therapy” & “love&Sex” so you can easily sift through posts.

THE PLAYERS

SASHA:

Sasha lives in Los Angeles with her boyfriend Jax. She loves surfing, hiking, working, and sharing her story with others in the hopes that it might help them cope with their own chronic illness. When Sasha is not writing blog entries she is usually found creating projects for herself or her clients. Her successful self-owned business is based in Los Angeles, California. In her free time she likes to garden, do puzzles, and paint. She can’t wait to get back to surfing. Contact Sasha.

JAX:

Jax is an amazing man. He works hard at his full-time job and then comes home to work for Sasha and Jax’s company. He loves classic cars and planes and is a huge fan of Steve McQueen (who isn’t?!!). He’s great with technology and teaching Sasha the ins and outs of this blog. He also refuses to let Sasha use the word “blog” as a verb – which she believes is a very noble cause. He’s definitely more funny than Sasha. He loves the outdoors including swimming, hiking, the sea air, and is tremendously fascinating. Girls: Keep your hands off him – he’s mine!

SASHA’S MEDICAL LAUNDRY LIST:

There are rumors that a chronic disease is like living with a third person in your relationship. It’s sadly the one that you’d love to get rid of, break up with, and kick out with no chance of return. It’s been said that a couple must find a way to make peace with this beast or it will devour them.

In 2002, Sasha was diagnosed with idiopathic chronic pancreatitis which followed after an urgent hospitalization from an acute pancreatic attack. (Idiopathic simply means there is no known reason for it and NOT alcohol related). Since she’s not an alcoholic at all, it took four long months to get any diagnosis and was only an accident that she survived (blog post to come later). Many doctors had initially told her it was in her head. She told them to f–off and that she’d rather be at work. An amazing Dr.B (a G.I. doc) performed an exhaustive run of tests and eventually as a last effort did an ERCP. This tests puts a camera into the pancreas to see what is wrong. Since the blood work did not show any change in the amalyse or lipase enzymes, it was a stretch. Amazingly, the ERCP test reproduced the exact symptoms of acute pancreatitis and therefore Sasha had a doctor on her side. Dr.B fought for her life on several occasions and eventually sent her to a pain management clinic when nothing else would ease the intense pain. In 2006 many possible treatments were tried, but it was only in February, 2007 that Medtronic’s Intrathecal Pump was installed by an incredible Dr.P into her abdomen under the skin. (Looking pregnant never felt so good). It’s a medicine delivery system that takes it right to the source of the pain. It’s required that patients receive psychological therapy and approval before getting a pump. Due to Sasha’s harsh childhood she had to make 9 months of visits before they could put the pump in. In fact, studies have been done where the percentages of getting better are based on childhood traumas. Since that time the pancreatitis has been under control and Sasha. The pump is a true miracle for those suffering from extreme pancreatitis.

The next set of issues started to become uncovered after the intense pain of pancreatitis was dramatically decreased. The symptoms also began in 2002. There are questions about whether the two chronic diseases could be linked back to some originating source. The doctors feared it might be Lupus – but blood tests said it could not be possible. Many of the symptoms including shooting out an organ seem to be the same. After a stressful summer and near-death, in August of 2007 the doctors began to find numerous things wrong with her system including blood work showing potential diabetes. The answer to that still remains because she was immediately put on Prednisone to deal with the intense swelling of her limbs.

Rheumatoid Arthritis is not picky about who it strikes. It is completely and utterly life shattering because it starts to make the use of the body seemingly impossible. At first it was subtle for Sasha such as opening jars, dropping glasses and a limp that friends saw as quirky and cute. Also, when she surfed in the Pacific her hands would get oddly cold and curled up along with the feeling of stumpy feet for an entire day. This gave way at 34 yrs. old to enormous difficulty getting out of bed, impossible to go down the stairs, a voice that would go completely hoarse and the loss of use of her hands which seemed to curl up into painful balls. Her body started swelling out of control and shoes no longer fit. Her hands and feet began to resemble balloons. The pain was unbearable. As per usual, it did not show up in her blood work and still does not to this day. The only out of sort marker was that of “inflammation” and luckily a good Rheumatologist doctor decided to get to the bottom of the mystery. X-Rays were not clear enough and eventually it was an MRI of the hand that showed the bone damage. The doctor declared it “seronegative rheumatoid arthritis” which simply means that it doesn’t show up in the blood work, but it is identical in every way. Sasha is now on Methotrexate and other meds in the hopes of feeling better. It seems to be working!

The swelling has gone down dramatically and even though all of the symptoms are very present, she can now go down the stairs, type on the computer, and feel more optimistic. Surfing again will have to come later when more of her strength returns. (written in Dec. 2007) Read on to see how things are now….

12 responses

8 09 2011
lee taylor

anyone with Non-Hodgkin Lymphoma on their Brain Stem & Primary Central Nervous system?…Headaches 24/7, with Migraines 2- 3 times a week, with Extremely Stiff and swollen legs & knees….24/7….?

18 07 2009
Justin

i have a pain on the right side of my body. I am worried that it might be panceitis. I have been doing research ever since the pain on the right side of my body just under my rib cage started. It hurt wnen i bent to the right or to the left. It went away on the first day but then it came back. I’ve found 3 reasons for this so far, back/spine problems, Pancreaitis and a strained muscle from sweeping.

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