Jax and Sasha Sexathon

The word sexathon is so dirty, naughty, and hysterical!  I’m feeling much better after the alarm bells all went off when Jax wanted to breakup because of being tired of dealing with my illnesses.  I am still living in fear that he’ll leave if I feel bad for more than a few moments…but I don’t have a choice – I am forced to live with my diseases whether I want them or not.  If Jax ends up leaving because of my diseases then I can’t stop him or blame him.  It is a reality that I am faced with that no matter who I am with there will be some care-taking involved.  He said “I don’t know how to switch back to being your lover after being your caregiver for so long”.

I’m sure he’s not alone, but it’s hard to find anything about this on the web because people are so afraid to admit that they haven’t had sex for over a year due to illness/disease/pain/depression, etc.  Some days are good and others are simply horrific.  Many of you that have read my blog before might know that Jax and I have sexual/intimacy issues due to my diseases.  Ever since my pump got “installed” with surgery last February07 we’ve gone to therapy, tried all kinds of things, but ultimately had not connected in the direct sense of the word sex.

I don’t understand the concept of lover vs. caregiver as it stands now.  Meaning that I am no longer in that emergency state.  I’m at that place where I am stable and just seeking for my life to share that stability.  Jax always reminds me that most guys would’ve been long gone by now. My diseases seem to drive those I live the most away. Or people simply can’t believe the pain can be so severe on and on and on.  Who knows?

If Jax left me wouldn’t this pattern repeat itself over and over in my life unless I drastically changed things?

I’ve finally taken matters completely into my own hands (no matter what I write, the words are all sexual innuendos at this point).  I’ve decided that I need to be willing to change.  I think it’s been really easy for me to blame Jax for no action, but then I realized I haven’t been the first to initiate things in twice as long.  I used to try to initiate, but would get the subtle rejection so I stopped trying.  I realized that this was ages ago so it couldn’t hurt more than it already does to be the initiator.

I put my pride aside and bing bang boom… things are starting to work out again.  We’re totally out of practice, but at least we’re still able to have a good time.  We giggled and laughed and made fun of our selves for being out of shape.. and I tried to think around my RA (try doing repetitive hand motions when you have severe RA!!).  I mean, I cant even masturbate as I mentioned before because my RA is so bad.  I now have to use “equipment” which I loathe. I was an all natural girl!

Jax and I have been in this new phase we’re calling “CHANGE”.  We made a promise to each other to change at least 1 thing per day.  This can be doing something differently than before, doing something new, or simply switching who leads something we’ve done a lot but never been the leader of doing.  We’re going to join the YMCA so we can start working out (so I can lose those last 30 pounds that are lingering since that damn prednisone. We’re going to go to bed earlier, and I’m going to eat only a liquid diet for lunch for a bit.

I’m so grateful Jax did not leave me. (<–Read the background on this). I would’ve always tied it together with my weight being higher now than ever before (from the prednisone).  What would I do if my RA magically went away with my pancreatitis? A rhetorical question to be sure!

love Sasha,xoxoxox

Safe Journeys.

Getting Help for R.A.

This weekend has been one of those bummer ones that flies by while I’ve been struggling from hour one to get on a good page. I had to break out the old cane again as I struggled to move around the house. On Saturday Jax played some Rifts game all day and on Sunday he went go-kart racing with his buddies and I was truly happy he got a chance to have a great weekend. We had a nice meal out on Saturday night, but honestly I was such a grump he had a tough job of trying to keep my mind positive. (Read who Jax and I are here).

I wanted to be positive so badly. I worked on my visualization techniques and even wrote out an entire positive future for myself that I am certain will really happen. I am certain that it is already happening. (as I type away my wrists are begging me to stop). My immediate reality is quite different than the visualizing I did. My Dr.’s office readjusted my pump (posts on my pump & chronic pancreatitis). They set it way to low in an effort to have me try out this “remote” which could be amazing if they hadn’t of taken my overall medicine level so darn low.

The other hurdle is PMS – Anytime I have PMS or just start to bleed I get much worse RA. My symptoms are flaring and I feel 90. I slept a lot which reminded me of how much i used to sleep before I got the proper treatment. I’m also waiting to switch doctors but need to have a bit more time to take care of that issue. My current rheumie Dr is such an arrogant prick. His staff are always on edge and I swear they hate everyone. Not the type of environment I like to live in.

As i was feeling sorry for myself (well – only a tad bit as i always work hard to keep my ego in check) and also as I began working on my fundraising work for my project with these incredible at-risk teen girls I wanted to write for a few minutes. Honestly it is so i can take a break from my visualization work. Anyhow, Jax and I just ordered groceries online. We’ve done this about 5 times now from yummy.com and i am so amazed at how good the service is. You can create a list and re-use it again and again. Also, with RA I can hardly walk much less carry heavy groceries from the car (we live on a busy street with only street parking about 2 blocks away). (see blog called “your searching for” with many readers questions answered.)

I found a new comment from a reader Heidi that really affected me. i could totally understand where she is at – so i want to share it with you all. This is only a piece of her comment. She wrote for awhile about how she had to watch her dad suffer her whole life with RA. He is dead now and it was very sad to hear her fears.

I am scared after watching what my father endured for almost 30 years. I now have bumps on the top of both wrists and can barely button my sons shirt. The flare-ups seem to be closer and closer and last longer. I have lost 55 lbs. in the last 9 months. The pain is now getting more prominent in my elbows, toes, hips, etc. I have been running my whole life, it’s sorta like a meditation for me and the thought of not being able to run one day depresses me.

I am looking at getting into UCI in souther california, but I don’t know where I stand with no medical insurance. I guess I just need someone to tell me how important this is. My career may soon be over and I will have to start a new one as my hands seem to be deteriorating before me. Can anyone offer advice please? I would truly appreciate it. – Heidi

I would love to try to be of help to Heidi. Naturally, this is my opinion only and I am not a Dr. First, if you think you have RA which sure sounds like it – you MUST get insurance – job or no job. I can’t imagine the battle ahead if you don’t have it. I’m not sure what state you live in, but perhaps you belong to a group or organization that offers insurance to members. Also, I went to an insurance broker and got an individual plan which costs about the same as if I had it through a job. I got the number from my internist.  (Also, see comments below for great info for Heidi from reader Sheryl and also a wonderful letter from reader Linda).

Next, get the insurance BEFORE getting treated or a diagnosis. right now you don’t officially have a pre-existing condition. This is a very good thing. In fact, as hellish as you might feel about things right now it could really be god looking out for you – and i’m not a religious person at all. But seriously, it is good that you get the insurance clean with nothing like RA on your records.

Then, after you have the insurance (can take a total of 15 days) you can see a doctor within their network. I would always recommend the UCLA Medical Center. They have great ratings and have been great to me. I’m not sure what UCI is – but USC Med Center also has great doctors. Like I said, my Dr. is a prick, otherwise i would recommend him. You can also get a recommendation from the family doctor – I’ve found my best doctors this way. Once you get an appointment there is a key few things to prepare yourself.

Don’t worry about what your friends think about this situation. Don’t worry about being a hypochondriac. Only be concerned with positive solutions. Also, don’t worry yourself sick over this situation. It will only make RA worse if that is what you have. In fact, stress will make everything worse. Work stress is what kicked my RA into high gear.

You might have sero-negative rheumatoid arthritis. (More on this topic here). That means that it won’t show up in bloodwork as traditional RA, but it is just as much RA as any other. This is what happened to me. I had a few years of symptoms but no doctor could offer a solution. I commonly got diagnosed with lupus. I have a few symptoms of lupus that bare not part of RA so the verdict is still out on that one – but I’m confident that my positive visualization will keep some of those symptoms at bay for now. (That’s not to say that thinking positively or negatively would change the seriousness of my health issues, nor do i believe that negative thoughts caused my diseases. sometimes it is environment, stress, genetics, and various other uncontrollable reasons).

The Dr. found that my hands showed the already severe RA damage in my MRI scans. They had me choose a hand. I randomly picked the left one. The bone damage alone allowed my Dr’s to treat me for RA and to give that diagnosis.

I’ve often said that medicine is in the dark ages. Dr’s must rely on bloodwork as the tell-all answer for their entire treatment plan. Some Dr’s may want to try a particular drug, but health insurance companies dictate how Dr’s can perform. It is totally bass ackwards!

I will warn you that initially they may try to put you on prednisone to allow motion to come back to you. This was the worst decision for me and I regret taking it. (More posts about prednisone here).  I wish I knew the side effects ahead of time. I wished I had joined weight watchers at the very start of treatment. I’m finally fitting into size 10 clothes again but it’s been 8 months!!! And forget the weight – what it did to my liver is unthinkable!! The same happened to me on Methotrexate – but once I was on Enbrel i was finally on the path to recovery.

My blog is all about my journey from pre-diagnosis to the early days of discovery. Using the calendar at the right you’ll be able to trace back how I have coped (or not) with all of this. My issue was less about buttons since I have all pull-ons and zippers – but more about work, typing, walking, loving, living. I hope this info helps.   Please let me know.

Love, Sasha xoxoxoxo

Today it’s the Pancreatitis

I’ve gotten over my mini-hurdle of being depressed (again) and have been getting through stacks of work like there’s no tomorrow.  I have to be careful to “measure” myself otherwise i will suffer the consequences the next day.  Like Sunday, I mopped and cleaned the entire house top to bottom  – and monday I was a train-wreck!

I’m getting ready to leave home for a month for a HUGE project.  I have butterflies and knots in my stomach just thinking about all of the details. Luckily, I’ve started to receive donations for my work and that will prevent me from ending up back in the hospital like I did last year when the stress of no money all crashed down on me and took an enormous toll on me.  I got pneumonia, RA, and a slew of other issues as a result of the sudden shocking stress.

READ ON TO HEAR ME KVETCH ABOUT ONE OF THE RECENT COMMENTS….. A lot of very well-meaning friends tell me to get better real soon and I have to laugh to myself.  I know what they mean, of course, but I sometimes want to shout “Don’t you get it!!! I’m not going to get rid of these diseases.  These demons found me and they’ll never let me go!!”  But instead I take their meaning for what it’s worth and smile and make a little prayer to myself to do just that – to get better.  I imagine some of the evil RA cells getting shot down and replaced by little flowers that can grow and take up far more room than the bad cells.

But then there’s the pancreatitis.  I’m not sure what brought it on.  6 years ago I suddenly had it.  I thought maybe I ate bad cheese will botchalism since another woman at the same event as me came down with identical symptoms.  Now, I just don’t know anything.  Many of you have asked what it feels like.  Essentially, after i eat almost anything I get the worst, most intense stabbing feeling just below my ribs at my solar plexus.  The pain sears through my back from my front.  The pain radiates down my ribs and seems to bounce around.  At the beginning I threw up all of the time.  My pump helps a lot.  It takes the pain level from a constant 10 down to a 3 without food and a 7-8 with food, which lasts a few hours.  I’ve had surgeries and more doctors than you can imagine (well, yes, you probably can).

BUT I REFUSE to let this get me.  I refuse to let it win my life over.  I refuse to let it make me an angry bitter person.  I strive for so much more in my life and I intend on making my life exactly what I have always dreamed.  I’m already half way there.  I haven’t let the disease make me idle or stagnant.  I haven’t let it win my spirit or my soul.  and I refuse to let it.

One of my readers suggested that I sit around with my thumbs up my bum while they suffer through the pain because they have a “mortgage to pay”.  GET REAL!!  This person obviously goes for the jugular.  They said they don’t sit around with the pain of RA.  Who does?  None of my readers, that’s for sure!!   I certainly think that almost all of my readers have to make money, take care of their kids, and make ends meet. 

When Will I Die From This?

“Chronic pancreatitis does not resolve itself and results in a slow destruction of the pancreas. Either form can cause serious complications. In severe cases, bleeding, tissue damage, and infection may occur. Pseudocysts, accumulations of fluid and tissue debris, may also develop. And enzymes and toxins may enter the bloodstream, injuring the heart, lungs, and kidneys, or other organs.”  –wikianswers.com

Today i was thinking about my life as a whole.  I know that’s a dangerous and silly thing to do – but there I ws, pondering how some days are better than others.  Today I have had a hard time getting around even though the Enbrel is really helping a ton!  I broke out the old cane again yesterday and found that it made me less exhausted to just use it.   It’s hot and humid and got me thinking that I thought Florida (hot and humid) was good for bad bones – but it feels like it does when it’s about to rain.

“When these self-protective mechanisms break down for any reason, the result is leakage of enyzmes which damage the pancreas and any surrounding tissue they reach. This breakdown is called pancreatitis… Pancreatitis can be acute and only occur once in a lifetime or it can become chronic and keep returning over and over again. It can be a rapidly fatal illness or a mild attack of pain that resolves in a few hours or a day or so. It can cause tremendous side effects, including shock, blood clotting disorders, heart arrythmias, liver or kidney damage and death. Less commonly, pancreatitis strikes with a sudden severe fury that creates severe secondary problems, particularly with blood clotting and shock. In these cases, it can be fatal.”  –(although this description is for pets I foundit to be the best written piece of info about possible death for me).

From all of my research it does seem like this is a longterm disease with no imminent death issue present…meaning that the attacks will probably not kill you.  But you do need to remove high fat content from your diet and eat smaller portions to prevent the pancreas from being overactive.

Tonight at couple’s therapy Jax and I… [READ MORE and get the scoop on: “It’s so hard to express pain.  If you say it out loud then you seem like a complainer.  If you keep it to yourself than“… and also “I want to scream “WHEN WILL THIS END!!!????“…

….had a love fest.  We are getting along really well.  We’re both working hard, but he’s able to work longer hours than I am right now.  I wish I could take my body back 4 years before all of this got so out of control.  I haven’t been able to work long hours and as a result I’ve gotten very behind on things.  I have so much to accomplish before the end of tonight.  I really hope I can kick it into gear.

I’m still messed up from my pancreatic attack last Sunday (1 1/2 weeks ago).  It usually takes about 3 days to recover but then I have to be very careful what i eat for the next 2 weeks.  This time around – no matter what I eat I end up in pain.  I want to scream “WHEN WILL THIS END!!!????”  But the true answer is never.

On my trip last week, I stopped in to see my oldest friend in my life.  She has a new baby and live-in boyfriend.  It was great to see people making a new life for herself and I imagined her own parents excitement about their new life when she was first born.  (They still live in the same house so it isn’t that tough to imagine).  They own their house which is also great.

While I was pacing their house walking in circles with pain from my pancreas (it must have been the bacon grease in the pancakes – I’ve thought about long and hard and can’t think of anything else that could’ve hit me that hard)… and he said “I don’t think you’ll die from this at any point…I think you’ll die from something else.”  I know I should just blow it off – but I am so angry about this odd statement.  First, how in the world would he know what I’d die from?  Second, does he know I’ve almost been dead on at least 5 occasions because of pancreatitis?  Third, what “other” thing does he claim to think I’ll die from?  Fourth, thanks.. while they are building their new home (metaphorically), new awesome life, and not worried about money like I am… on a moment to moment basis now due to my medical bills… why would he dare suggesting that I would die from something else?  Mind you, I don’t want to die from pancreatitis… but I certainly don’t like anyone suggesting that it’s not that bad when I am freaking pacing their house worried that I have to go to the Emergency Room again.  Wow!!!!  i did not realize how mad I was about this.  I have really been upset by the glib remark.

I’m sure he’s a nice guy – but I haven’t been able to talk to my friend in person without him for years.  Well, I’ll rephrase that – the last time we really talked without him was 6 years ago when I very first got ill.  She was staying at my place waiting for him to pick her up while traveling through Los Angeles back to Texas.  I was super-ill and angry and freaking out – but she was in love and could not relate to my situation at all.  I nearly punched her in the face when she woke me up whispering to him on the phone 1 foot from my face at 5:45am for over 15 minutes.  I had just fallen asleep after being in pain all night.  What a drag!

It’s so hard to express pain.  If you say it out loud then you seem like a complainer.  If you keep it to yourself than no one knows you’re in pain and then they don’t even believe or understand the amount of pain you are in…. or they think it must not be that bad since you haven’t been bitching about it.  But what if i don’t want to complain about it?  I don’t want to have that type of outlook on life… I just want to get on with things and not dwell on it.  So what in the world is the middle ground?  Does anyone know?

Love, Sasha xoxo
PS -See reader comments next email!

Pass the Pain, Please

It’s 10:30am on Saturday morning and I just got over a 2 day pancreatic attack. For those of you with RA that don’t (thank god) have pancreatitis let me briefly explain what happens to me: First, the pain coming from my pancreas is excruciating. It is like being stabbed with a bayonet or a long sword directly through your solar plexus. Then it slides down my ribs and around my rib cage. This is usually when I crawl into a ball on the couch or in bed, or on the floor – anywhere really. I take my medicine and wait. I do have a pump but it just helps me to manage being alive. Without my pump I would be very dead. From my understanding, the way a person dies from a pancreatic attack is that the body goes into shock and starts shutting itself off. First, your blood pressure drops very low. Then you temperature goes up to about 101. Next, your system starts turning off all the switches trying to save itself from the shock it is in.

It usually takes about 3 days for me to recover from a pancreatic attack. Now, since my pump, it varies depending on how bad the attack is. I’m not clear why the attacks happen. Sometimes it’s food based, others there’s no rhyme or reason. I never drink even a drop of alcohol. I’m very strict about that. You’ll never ever see me drink a beer or a cocktail.

Since this is all about pancreatitis, I’ll start a new post that’ll be about RA to talk more about what’s happening in life. I suppose i don’t like to cross-pollinate the diseases.  If you’re new to this blog and interested to read more, the chronology page might be a good place to start.  –Sasha xoxo

Medical Definitions

Here are some descriptions of medical items mentioned on this site. As I find better ones I’ll post them.

RA=Rheumatoid Arthritis /   CP= Chronic Pancreatitis  (further below)

Rheumatoid Arthritis

Medicine.net description: The exact cause of rheumatoid arthritis is unknown, but it is thought to be due to a combination of genetic, environmental and hormonal factors. With rheumatoid arthritis, something seems to trigger the immune system to attack the joints and sometimes other organs. Some theories suggest that a virus or bacteria may alter the immune system, causing it to attack the joints.

Once the immune system is triggered, immune cells migrate from the blood into the joints and produce substances that cause inflammation. The increased number of cells and inflammatory substances within the joint cause irritation, wearing down cartilage (cushioning material at the end of bones), swelling the joint lining (synovium) and causing the joint lining to produce fluid.

As the cartilage wears down, the space between the bones narrows. If the condition worsens, the bones could rub against each other. As the joint lining expands, it may invade into or erode the bone, resulting in irreversible damage to the bone. All of these factors cause the joint to become very painful, swollen and warm to the touch.

Webmd description: Rheumatoid arthritis (RA) is a chronic (long-term) disease. The symptoms can come and go, and each person with RA is affected differently. Some people have long periods of remission. Their rheumatoid arthritis is inactive, and they have few or no symptoms during this time. Other people might have near-constant symptoms for months at a stretch.

Although rheumatoid arthritis can involve different parts the body, joints are always affected. When the disease acts up, joints become inflamed. Inflammation is the body’s natural response to infection or other threats, but in rheumatoid arthritis inflammation occurs inappropriately and for unknown reasons.

Common Symptoms of Joint Inflammation

• Stiffness. The joint is harder to use and might have a limited range of motion. Morning stiffness is one of the hallmark symptoms of rheumatoid arthritis. While many people without it have stiff joints in the morning, it can take people with rheumatoid arthritis more than an hour (sometimes several hours) before their joints feel loose.
• Swelling. Fluid enters into the joint and it becomes puffy; this also contributes to stiffness.
• Pain. Inflammation inside a joint makes it sensitive and tender. Prolonged inflammation causes damage that also contributes to pain.
• Redness and warmth. The joints may be somewhat warmer and more pink or red than the neighboring skin.

Which joints does RA affect? The hands are most often affected, although literally any joint can be affected by rheumatoid arthritis: knees, wrists, neck, shoulders, elbows, even the jaw. Joints are usually affected in a symmetrical pattern — the same joints on both sides of the body.

Symptoms That Affect the Entire Body: Rheumatoid arthritis also acts throughout the body, and it can have general effects or involve other areas besides the joints. These effects all result from the general process of inflammation:

• Fatigue
• Malaise (feeling ill)
• Loss of appetite, which can lead to weight loss
• Muscle aches

These feelings have been compared to having the flu, although they are usually less intense.

Rheumatoid arthritis may affect your skin, lungs, and voice. Here’s how:

• Rheumatoid nodules are bumps under the skin that most often appear on the elbows. Sometimes they are painful. Injection treatments usually help.
• Lung involvement is common but usually causes no symptoms. If shortness of breath develops, it can be treated with medicines that reduce inflammation in the lungs.
• Rheumatoid arthritis can even affect a joint in your voice box or larynx (cricoarytenoid joint), causing hoarseness.

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Pancreatitis

There are two types of pancreatitis, chronic and acute. Both are inflammations of the pancreas, a gland that produces digestive enzymes, which your body uses to metabolize carbohydrates and fats, and the hormone insulin.

The symptoms of acute pancreatitis are typically severe and need to be treated. If they aren’t, you may develop pancreatic cysts, abscesses, and leaks of pancreatic fluid into the abdomen, which can lead to other long-term problems or even death. Shock is a possibly fatal complication of acute pancreatitis.

Chronic pancreatitis develops over a number of years, usually after a history of recurrent attacks of acute pancreatitis. Chronic pancreatitis may cause you to lose the ability to secrete the enzymes your body needs to digest foods. The resulting condition, known as pancreatic insufficiency, is a principal characteristic of chronic pancreatitis and is signaled by weight loss — either gradual or sudden — and foul-smelling stools or diarrhea. Chronic pancreatitis can also lead to diabetes mellitus and pancreatic calcification, in which small, hard deposits develop in the pancreas.

Chronic pancreatitis is one of the most challenging pain syndromes to treat. Pancreatitis is a serious inflammatory disorder of the pancreas. The chronic form, clinically distinct from acute pancreatitis, often results from alcoholism (not in the case of Sasha – see About). It involves permanent, progressive destruction of pancreatic tissue. Experts believe that pain is caused by blockage or inflammation in pancreatic ducts. Chronic abdominal pain is usually severe, stabbing, and burning, and it is constant in about 50% of patients.