Hardships of 2006

Jax had taken care of me through this whole thing. He did it without question and without complaint. He was incredible. By summer 2006 our sex-life had faded to this caretaker business and we were screwed (no pun intended). We tried a few times but Jax was so afraid of hurting me more that we couldn’t seem to get together very often. It was a new absolute stress in my life. I begged him to go to therapy but he didn’t see it as an option…. yet. We’d get through this – he’d say. But everywhere we turned there was more crisis and chaos. This is when I turned to Mayan doctors and anything that might help. I ended up having to drink onion juice and pour scalding hot rose petal water on myself (quite a show). It only was making matters worse. The meds were causing severe constipation and I began water bum treatments called hydrotherapy. It helped but was certainly no cure.

In the summer 2006 I faced a new medical dilemma. The GI doc wanted to put me on a feeding tube. Go to the definitions page to read what horror that is! The other option was a TCP line. (Or maybe I’m confusing the name with internet protocol) but essentially my normal life would be over, I’d lose my clients, and my life would feel over.  I’d have to go around with an IV tower and have it “feeding me” for 12 hours a day.  They told me it would be in only when i was sleeping… but I only sleep about 4 hours or less a night!

Luckily the new psychologist nixed the idea and told the docs that I’d probably kill myself if I went through that trauma. It was true – Through this entire journey I was still able to pretend I wasn’t sick. It was always at my expense – the energy required to hide my illness was one of the things killing me. The real toll was not only my business and work but also Jax and I had to basically just barely get by. Thank god we were in love. I urged him to find another woman so he didn’t have to go through this. He said he was in it for the long haul and refused my offer to be free. How could he be so sweet in the face of this extreme adversity?

Somehow I worked enough to continue to make my business thrive but I couldn’t keep it up and I gave in at the end of 2006. I slept almost all of January 2007. Luckily, on February 13th, 2007 I had done all the essential steps to finally get my pain pump put in. The morphine delivery system meant I would stop getting severe constipation and that I could appear normal.

2 of my close friends came to help me after the surgery since neither of my folks could make it out.  They live o0verseas and it would be a big hardship for them.  One of my friends, Lizzie, has 3 kids but still came out to help.  I was so grateful.  Also, a great old roommate of mine with 2 kids came out.  I felt deeply loved.   I also felt badly that I could do little more than sleep.  Lizzie helped Jax which I was grateful for.

2 weeks later I was getting back to work and harder than ever. I’d lost so much time. I had last left off at being asleep 5 days a week. I tried to catch up, but there was a new kink in the works – a once in a lifetime project had come my way and I didn’t want to pass it up. I started working harder than ever and went on 20 hour a day work binges. It was essential if I was going to get this project accomplished.

Jax and I were affectionate with each other – but he was no even more afraid of hurting me with my new pump. How could we come back together sexually? There was no time to deal with it-I was going to be out of town for almost 4 months.

That’s when I started this a a private blog. I thought my experiences could help someone else decide to get a pump, or better yet to learn some early signs of RA Because what I didn’t know was during this entire 6 year period I was battling with RA symptoms that were getting worse as I grew more ill and more stressed out.

-Sasha / over and out

Me and My Pump

It was a yearlong process to get the intrathecal pump. I didn’t care that it would protrude from my left belly. In fact, the doc says I didn’t want it. I don’t remember. I was in so much pain I wanted to kill myself. I wanted to put Jax, my family, and my friends out of constant fear and worry. The pain was making me someone I’m not.

I tried different treatments including Botox injections to the pancreas. It worked a bit to freeze the area but the pain was still unbearable. I wondered how long I would live all the time. I got B-12 shots, continued with alternative medicine paths such as biofeedback and some quantum machine where I felt I was being put in an electric chair. The stress of getting to the appointments and leaving work was a hole other ball of wax.

Then we tried a neuro-spinal stimulator. This was absurd. The pain was overshadowed by my newly electrified legs. I went through a horrific series of hospital surgeries to get the trial put in. One of the docs even swore he’d turned the unit off when in fact he’d put the unit to the top level of it’s electric capacities. YIKES!! I screamed, squealed, and agonized through the torture of it. I felt I was no longer human. I felt subhuman.

Maybe it was that I knew I’d lose a few days of work so I’d literally work right up until the morning surgery. That meant going into surgery without sleep. I don’t recommend it, yet I did it before at least four surgeries (procedures).

The spinal stimulator was a no-go. I hated it. Eventually it was decided I would wait for the pump. I went down to having 4 days asleep per week. I was getting worse. I was so afraid of dying. At the same time I was still effectively running my office and going to client’s jobsites. This was insane.

[Post note: What I didn't yet understand at the time is how RA fit into all of this. I didn't know why I couldn't feel better. Looking back I believe a lot of this awfulness was actually due to RA].

xoxo,
Sasha

PS: You’re currently viewing the first part of a series on my pump.  For more information about the pump and my own experience you can visit ME and MY PUMP II , PAIN PUMP PLEASE which is a letter from a reader and more info about the steps I took to get my pump. Also: RESOURCE GUIDE 2009-Home Page, and TIPS FOR YOU (which has many links at the top of the page).

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.

———————————————————————————————————————-

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.