December 14, 2011

My Rheumatologist is putting me on Prednisone. There is still quite a bit of inflammation in my joints, especially wrists and ankles. She feels like it is the best thing to do to get me through the holidays without pain. Amen.

November 29, 2011

The side effects from the Methotrexate are gone. No more vertigo, itching, or nausea. 

I went to Arizona for Thanksgiving and felt wonderful in that dry climate. Here in San Diego, it's back to the cool, moist air that tends to give me so much pain. I really shouldn't complain. Last year in November I thought I was going to die. With only Naproxen to help me I was heading downhill fast. Now, thanks to the Enbrel, Methotrexate, and Meloxicam I feel 80% and that's a whole lot better than the near death feeling of a year ago. 

October 27, 2011

I only lasted ten minutes at my water aerobics class. My legs felt like they were on fire, itching like they've never itched before. I realized I had been pretty itchy lately so I did a little research. Sure enough, itching is a side effect of Methotrexate. I hate that drug. Between the itching and vertigo I'm about ready to burn the rest of the pills. 

October 26, 2011

We just had a meeting with the school to put a 504 plan in place for Maddie. It is a simple plan that allows Maddie to inform them if she is stiff or in pain. Then Maddie can modify the PE activity as needed or sit out if necessary. Maddie has had arthritis for almost 4 years. We have no way of knowing if she'll outgrow this. I thought it would be best to have the 504 in place now so that once she gets to middle school and high school she won't be penalized for any inability to participate fully in PE or other physical activities.

October 22, 2011

For the past two or three weeks I have been experiencing vertigo. I think it might be linked to the Methotrexate. I used Methotrexate for three months, then stopped for a month. It was when I went back on the medicine that the vertigo began. I have learned to manage arthritis stiffness and pain. But I will never be able to get used to vertigo. It's just about the worst side effect that could happen to me. It scares me, not knowing when I'm going to lose control of my balance, not knowing if I'll suddenly become dizzy while driving. I have to find a solution or I'll go absolutely crazy!

September 09, 2011

I have been to three water aerobics classes and I think this type of exercise is going to work well for me. I don't feel pain in my joints at all when I'm exercising or after. I hope this movement will help my arthritis.

August 31, 2011

I joined a gym. I've been bad for many years about regular exercise but I have felt like I'm losing my flexibility and I don't want to end up in a wheelchair like my friend with RA. So, I went searching for a gym with water aerobics classes and found one. I went for my first class yesterday but due to some wrong turns I was too embarrassed to walk in late. Instead I drove to our community pool and swam which felt so refreshing on a hot morning. 8 laps was all I could manage. I'm feeling it today, sore and stiff. I'll try again tomorrow. An every-other-day routine will have to be it for now, until my body gets used to exercise. I am hoping this will help my joints and my lungs. 

August 26, 2011

My sed rate (measuring the inflammation in my body) keeps going up with each blood test, doubling from what it was 6 months ago. It doesn't make sense. Shouldn't the Enbrel and Methotrexate make it decrease? I'm in less pain now then I was a few months ago but the tests are showing something different.

July 27, 2011

I did something really stupid...forgetting to order a refill of my Enbrel. Saturday morning I opened the fridge to get a syringe and I was out. So I called the pharmacy and they said they could have it in Tuesday. By Monday night I was in excruciating pain that had hit me like a brick wall. Tuesday the medicine didn't come in so I had the pharmacy call around to all the other Kaiser pharmacies in San Diego to find the medicine. I felt that desperate, like a drug addict who can't live without. My husband was at a business lunch downtown so he was able to pick up the Enbrel at the hospital and bring it home. Unfortunately the drug effects aren't immediate but I'm sure by tonight (Wed.) I'll be feeling a little better, less grumpy, in less pain.

Without the medicine I am unable to play the piano, my temper is so short it's terrifying my kids, and it's hard to make myself eat. I am amazed at how much pain I would have if it were not for this miracle drug. The pain with this type of arthritis can be completely overwhelming.

July 23, 2011

July 19, 2011

It's the humidity and the cold that get to me.

I just went on a vacation to a dry climate and felt great, until it got cold one night. When I'm at the beach, even when it's hot outside, I am in pain because of the humidity.

I told my husband we may have to leave our gorgeous San Diego and move to Arizona because it's hot and dry there. I don't think I'll be able to convince him.

July 16, 2011

Maddie is doing really well this summer. She joined the summer swim team and works out every day. Her heel pain has improved and she was able to go hiking during our vacation without complaining once. She absolutely loves ballet, but if the flair-ups continue and the heel pain gets worse she might give that up and just do the swimming. She doesn't ever hurt in the pool.

June 19, 2011

My new loves and things I cannot live without...

1. Really hot, long showers
2. Exercising in a Jacuzzi
3. My heating pad
4. Tiger Balm
5. 8-10 hours of sleep at night
6. My Rheumatologist and the drugs she gives me
7. Sunbathing

June 07, 2011

Today I had a rheumatology appointment. I've gained 15 pounds so now I can stop that weight gain diet, but lately I've been craving food and eating has become fun, so it could be harder than I want to put a pause on my weight gain. The doctor is having me add Methotrexate to my drug cocktail since the Enbrel alone isn't working 100%. I still have too much inflammation surrounding my joints. I am not excited about the Methotrexate because of all the side effects. People don't call it chemotherapy in a pill for nothing. I finished my bottle of fish oil pills. I had read fish oil reduces inflammation, but it did nothing for me and since the Alaskan salmon pills are quite expensive and my heart is totally healthy I'll not be buying a new bottle anytime soon.

June 06, 2011

I have a $30,000 a year disease. I am so grateful for health insurance that covers most of that. For the first time in my life I am receiving more in benefits than what I pay in health care premiums. That rainy day came after all.

May 28, 2011

It is so strange not having consistency. Why do I feel almost normal one day and the next I feel terrible pain? Sometimes I'll have differences within the same day. I can be walking around fine all day, then I stand up from the dinner table in the evening and my knees and hips decide to take a vacation making me walk like an old lady. I am a plan ahead type person, yet these days my plans have to include a "maybe" factor depending on how I feel when I wake up that morning.

This week I felt wonderful on Monday, Tuesday, and Wednesday. Then it all changed when I woke up Thursday morning. My hands and fingers were swollen, unable to make a fist. I was in terrible pain. Friday was the same. Saturday morning, today, I received the Enbrel injection and with the exception of the exhaustion I feel on injection days, I feel a little better. I made it over to the church to practice the organ. One hour passed quickly. My fingers and ankles felt no pain. How sweet it is.

May 21, 2011

I was so excited to find this. An arthritis pain management diary is the perfect tool to use when explaining arthritis pain to a Rheumatologist. This type of pain can be very difficult to describe. I've found myself saying things like "I'm experiencing labor pains in my elbow." Of course to a Rheumatologist who hasn't given birth that means absolutely nothing. Little tools such as this diary can be helpful for arthritis patients because blood tests can't reveal the amount or type of pain we're experiencing.

May 05, 2011

My sister has been having strange arthritis symptoms in addition to shooting pains in her left arm and leg. After weeks of visits with neurology specialists she was sent to a rheumatologist. Because of my diagnosis the doctor tested her for HLA-B27 and she was positive. We're not sure exactly what that means yet. She could have Reactive Arthritis or she could simply have a virus that is causing temporary joint inflammation.  She is in a lot of pain and it makes me sad for her. It is so strange that within the same year we are both discovering this gene and the arthritis that comes with it.

April 24, 2011

Maddie saw her Pediatric Rheumatologist at Rady Children's Hospital on Friday. We explained her recent flair and the persistent heel pain. Apparently this enthesitis, as it is called, is not uncommon in children with a B27 arthritis. It occurs due to inflammation of a muscle's tendon at its insertion site on bone. Maddie's heels start hurting after walking too much.  It is especially painful walking home from school. There isn't anything we can do for the pain, other than give her Naproxen. The doctor is sending us to the lab for lots of blood work including a DNA test. Maddie still hasn't been tested for HLA-B27. I requested that she get the test just so we know for sure if our arthritis is genetically linked.

April 16, 2011

I had an appointment yesterday with my Rheumatologist. I told her the Enbrel makes me feel 40-75% better, depending on the weather. She wants a 100% improvement so she is thinking about starting me on Methotrexate in addition to the Enbrel. We'll determine that at the next appointment based on my progress. My lab tests are all normal but the doctor is still able to feel inflammation in several joints. I told her the pain is manageable at this point, far from the intense (just let me die now) pain I felt a couple of months ago. I had gained weight, up to 110 now. Things are looking better.

April 10, 2011

I don't know what happened. This week I went back to feeling pain and stiffness. I wasn't able to play the piano. Okay, so it was raining off and on, but still, I had been doing so well. I find when I feel good I tend to do too much and get over-tired and sore the following day. But when household tasks are neglected it's hard not to jump in and get to work as fast as I can when I feel good. Restraint is not something I'm good at.

Maddie is doing better. Her knees, ankles and toes don't hurt anymore. She just has pain in her heels and I can't figure out if it's arthritis related or not. We see our rheumatologists in a week so we'll ask them about heels in our long list of questions.

March 30, 2011

I am feeling fantastic! The weather is warm and perfect. My joints feel normal, mostly. I have more energy. The Enbrel is working and I'm just about ready to get off the Meloxicam...just waiting on one stubborn ankle. 

My arthritis is very much affected by the weather, so I hope the sun stays for a while.

March 19, 2011

Maddie's arthritis is currently affecting both knees, an ankle, and a couple of toes. Her previous flairs have always been in one knee or one ankle; she'd get around by hopping on the opposite leg. This morning she couldn't walk because she couldn't hop on either leg. I've asked the doctors for crutches or a wheel chair for these times when she can't walk and they won't give me one. An 8-year-old doesn't fit in a stroller so I'm not sure exactly what they expect me to do. My husband can carry her but I can't, and since I'm the one that has to get her to school and back you would think the doctors would have a little compassion for a mother with an arthritic back. Yes, I've carried her to school piggyback. The doctors want her to take a hot bath in the morning, stretch, and move slowly to warm up the joint.  We're up at 6 a.m. as it is. I don't know if we can stand to start our routine any earlier.

March 18, 2011

The drug side effects can be dramatic. Mine, so far, haven't been too bad. My legs look all battered and bruised, I'm guessing it's the Meloxicam. Usually the bruises don't hurt, but I got this one falling off a chair (I was using it as a stool) and it does hurt...a lot.

March 15, 2011

Sleep is so important to me. It didn't used to be, but I'm finding that my arthritis pain is worse when I'm tired. The more sleep I get the better my joints feel and the better I feel overall. This past weekend I took a long nap on Saturday, went to bed early that night, took a nap Sunday, and slept well Sunday night. I felt so wonderful Monday. I wasn't stiff at all and was in very little pain.  Oh what a difference sleep makes.

March 11, 2011

The Enbrel is helping with morning stiffness. I'm walking better, going up and down the stairs, sometimes even running after my kids. But, I'm still in a tremendous amount of pain. I really am a wimp, I mean no pain tolerance whatsoever, despite giving birth 4 times. I assumed the Meloxicam had stopped working so I quit taking it and went back on the Naproxen. After a few days I was in tears and my husband suggested I switch back to Meloxicam. Note to self: Naproxen does not work for me. It's been 3 days and I'm doing a little better.  After six months of arthritis I'm starting to forget what "normal" feels like.

March 09, 2011

Thank heavens for my piano students. It is they who get me out of bed each day. It is because of teaching that I put on make-up. It is because they come to my home for lessons that I clean my house. I can't imagine the state of my house or my appearance without them. This arthritis makes me want to stay curled up in bed with a heating pad. But, that's about the worst thing I could do. I know I need to stay mobile however painful it is.  At least I have teaching, which helps me forget about the pain. That's a good thing

March 03, 2011

I call it "go mode", when I have to get a lot done at super speed. I used to be pretty fast when I needed to be but I don't have "go mode" anymore. I can't just tell my body to move fast and it's killing me. When my house is a mess and someone calls and says they'll be there in 30 minutes, I don't have that super speed to help me. Instead I clean one room and have to apologize for the rest of the mess. I hate making apologies. I am moving so much better on the Embrel but I'm not myself yet. I still have constant pain, especially when I try to do things fast.

I've cut back everything I can think of, all my extra activities. We're down to just the bare bones now, my work and my family. Last year I was directing church and school choir programs and volunteering all over the place. The only thing that's left is to cut down on my work or stop teaching altogether. I can't deny I've thought about it.  But, it would mean losing my home. It is so expensive to be a home owner in California that it takes two incomes for us to do it. Sometimes I hurt so bad that I don't care about my home at all. It's too much work anyway, I tell myself.

I've relied on "go mode" my whole life to get things done. Now, I have to take the tortoise route...slow and steady. I'm being forced to give up on perfection and speed. I have to choose what's important in my day and my life and re-invent the way I get things done.

February 28, 2011

I joined the Enbrel support group today. I don't know what possessed me to do it except that the phone number was on the box so I dialed it. Apparently they are going to send me some freebies like alcohol wipes and a carrying case.  I love free stuff.

February 27, 2011

Maddie woke up limping this morning and sure enough she has a swollen knee. Her last flair was 2 months ago. Usually her flairs are further apart.  I hope this doesn't mean the disease is getting worse. I started her on Naproxen which I hope will be enough this time.

Maddie's arthritis developed about a month after getting mononucleosis as a 5-year-old. I didn't even know kids that young could get mono. We joke that it was from sharing lip gloss with her friends at recess. The arthritis started in one knee. She had been limping a few days and I assumed it was from a playground injury. One morning she was complaining a lot about her knee pain so I took a closer look. When I tried to straighten her leg she screamed out in pain and I knew something wasn't right. I was able to get her in to a doctor that morning, not our regular pediatrician though. That turned out to be a blessing as this doctor became our favorite and we haven't seen another pediatrician since.  Lots of tests were run and scary names of illnesses were thrown around like Leukemia. Maddie was put on anti-inflammatories and sent home. The doctor called every day to see how she was doing; I didn't even know doctors still made calls like that. When the pain and stiffness didn't go away Maddie underwent more tests including a bone scan. Then we were referred to the Pediatric Rheumatologists at Rady Children's Hospital. I never suspected arthritis. There wasn't a family history and I hadn't ever heard anything about JRA. Since then she has had several flairs affecting only one joint at a time, knees and ankles. She's gone as long as 8 months between flairs. Really it has been a best case scenario for this disease. I pray it stays that way.

February 22, 2011

I went all day yesterday without using the heating pad. I've used the heating pad at least 2 hours a day for the past 4 months, minus a few days when I was on Prednizone. I didn't get tired yesterday. I stayed up past 11pm and woke up at 6am. Yea, the Enbrel must be working.

I was really disappointed before that my Rheumatologist had not seen either of these bumpy patches, what I suspect was psoriasis. It certainly would have made a diagnosis of Psoriatic Arthritis easier to come by, but then the doctor may not have ordered the HLA-B27 test. It was the combination of those test results and my back pain that made her suspect Anklosing Spondylitis in addition to PsA. Maybe she still would have figured it out but it might have taken longer.  I think it all worked to my advantage. I could have been stuck on methotrexate, sick as a dog. Instead I'm getting the best treatment the medical community has to offer. Methotrexate does not work for AS so you have to go straight to the biologics which work for both PsA and AS.

February 20, 2011

I noticed a 2 inch wide puffy red patch on my thigh this morning, a reaction from the Enbrel injection. As I was showing my husband he noticed a patch on my other thigh too from my injection a week ago. Maybe it has been there all week and I just didn't notice. The red patches were really itchy so I took some Chlor-Trimeton. Hope it works.

February 19, 2011

Maybe the Enbrel is working. I had very little stiffness this morning, just in my back. Joe gave me injection #3 which was less painful than the last two. Either he is getting better at giving shots or I'm toughening up.

I can't stop thinking about the Byron Janis story. He said his arthritis started with a red patch on his finger.  That is exactly how my arthritis started (different hand, different finger, same spot on the finger). Mine looked like a patch of psoriasis, which I had never had before, and it stayed for weeks.  When it finally disappeared in September 2010, the arthritis pain appeared. Doctors say it couldn't have been psoriasis because it doesn't appear on fingers.  

February 18, 2011

I practiced the piano today.  That may not sound like a big deal but I cannot remember the last time I was able to sit down and really practice, advanced music. I worked on music by Ravel, Chopin, and Bolcom. In college I spent about 4 hours a day at the piano and I expect 1-2 from my students. I have been so afraid of the pain I'd feel if I played that I quit playing, the advanced repertoire that is.

My sister-in-law sent me a link yesterday that compelled me to get back to the piano.

It's the story of Byron Janis using the power of his mind to deal with his Psoriatic Arthritis. He has been playing through the pain since 1973.  So today I decided to power up my mind and play the piano too. Only my right pinky finger hurt. I can deal with that.

February 15, 2011

I am in so much pain today.  My back is killing me and my knees and ankles don't want to move.  My friend called me and asked how I was feeling so I told her the truth.  She said she knew I'd be feeling bad because it's supposed to rain tomorrow.  Who needs a professional weather forecast, I've got my joints.

February 13, 2011

Maddie and I both visited our eye doctors this month to get checked for iritis and uvitis. These can occur with both our arthritis types.  I have to see an Optometrist once or twice a year and Maddie sees a Pediatric Opthamologist every three months.  Okay, so we don't actually get there every three months.  In fact the Opthamologist gave us a little lecture because it had been six months since Maddie had been in for an exam. The truth is I can't get her in every three months because his schedule is always booked, and I mean always. The office staff says to call on Monday mornings to book an appointment for 2 months from that day.  This time I called at 9:30AM Monday morning and they were completely booked.  This is the game we play.  Then I tell the receptionist to squeeze her in because the orders are coming from Children's Hospital, blah, blah, blah.  She can't see another doctor because of our Kaiser insurance.  This is Pediatric Opthamologist in all of San Diego County.  We just have to put up with it.

February 11, 2011

I weighed in at 103 this morning.  The weight gain diet isn't working.

February 10, 2011

I am accompanying the 2nd grade in their patriotic performance. Today was the dress rehearsal and due to a scheduling mishap all 160 2nd graders were kicked outside to rehearse. I know it's California but it's still February and it was really cold, especially for my fingers playing the piano, yes the piano was kicked outside as well. The arthritis feels worse in the cold. With my stiff fingers it took everything I had to play those songs which would normally be really easy for me to play.

February 09, 2011

I called Maddie's Rheumatologist today to let him know about my HLA-B27 positive results. He had mentioned before that if I have Psoriatic Arthritis it may change the way he treats Maddie and he may want to start her on methotrexate. Knowing that, I've delayed telling him these results. Methotrexate is a nasty drug for anyone, especially a tiny 8-year-old girl.  

February 05, 2011

I passed my TB test which is required before starting Enbrel.  My husband gave me my first injection.  He runs a nursing home so he had his nurses teach him how to do it.  Apparently they had him practice by sticking a needle into an orange.  If only my thighs were as firm as an orange. The injection felt like a bee sting. I sure hope this works.

January 31, 2011

Sundays are always difficult. After 45 minutes of sitting through church my back starts to hurt.  Yesterday it was especially painful. By the time I finished teaching my little 5-year-old Sunday School class I could hardly walk.  All I could think of is getting home to my heating pad.  My heating pad is my drug of choice.  I have to have it, can't live without it.  At times it means more to me than my own children.  Yesterday it wasn't working for me.  I was actually in tears. I had to step it up.  My husband had accidentally bought Tiger Balm patches which he dug out of the medicine closet.  He slapped one on my back and within 20 minutes I was sleeping like a baby. After a 2 hour nap I felt wonderful.  My addiction to the patches has begun.

January 27, 2011

I saw the Rheumatologist today. She told me she had a diagnosis for me: suronegative HLA-B27 positive inflammatory arthritis. That didn't sound like much of a diagnosis, more like a description. But I understand these things take time. The doctor was concerned about my back. The fact that the pain went away with the prednizone then returned once I was off it led her to believe I had Anklosing Spondylitis. Almost all AS patients are HLA-B27 positive. She said it was likely I had Psoriatic Arthritis and AS, a combination that is not uncommon. Well at least we know it isn't RA. And we have a possible genetic connection linking my arthritis to Maddie's. I bet if we tested her she would also be HLAB-27 positive. The doctor is taking me off Plaquenil, I wasn't tolerating it well anyway. I had two choices, to go the methotrexate/sulfasalazine route or the biologic route. The doctor recommended biologics because methotrexate won't work for AS and if I do have that we need to be really aggressive. I chose biologics so I start Enbrel next week.

January 23, 2011

Maddie performed in her first piano competition yesterday and won second place. It was a very difficult competition and there were many fantastic performers. Maddie is musically talented, and I don't use that term lightly. I've taught piano for over 20 years so I kind of have an idea what I'm talking about. She internalizes the music and plays with such artistry for one so young. Each time she performs I offer a silent prayer that the arthritis will never get to her hands and wrists. Lord, give her that at least.

January 19, 2011

At first it didn't bother me, people asking what's wrong with me, why I'm limping. Now it really bugs me.  I know I just have to get past it, or get a cane so I look like I have an official handicap. I am tired of explaining myself to everyone I know and even those I don't.

January 15, 2011

In order to get anything done around my house I just have to bite the bullet and get to work, even though it's painful.  I have found it helpful to listen to really loud music on my iPod while doing housework because then tasks like vacuuming don't seem to hurt as much.  One song in particular helps me forget the pain.  I don't know what's special about this song, maybe it brings back happy high school memories.  Anyway, here's my arthritis song.

January 13, 2011

I slept well but it was hard to get out of bed this morning.  It helped lying in bed for an hour, awake, stretching, before my feet hit the floor.  My 10-year old son helped me sit up.  Even after a long hot shower it was hard to get down the stairs because of stiff knees and ankles.  Guess all the Prednisone has officially worn off.

January 01, 2011

I'm 5'4" and weigh 105 pounds, that’s 9 pounds lighter than I was in early October. New Year's resolution...gain weight. Now how many people can say that?