Medication

lowering of my prednisone by half a tablet this week. So far I am at one and a half tablets of prednisone at 5 MG, one folic acid tablet at 1 MG and 1 multi vitamin, daily. I take four methotrexate tablets at 10 MG every Wednesday and the Humira injection every two weeks, all of which I have faithfully taken and not missed for fear of my stiffening joints coming back to haunt me. The weather certainly doesn't play any part in it's affect on my joints as I so often hear from other sufferers. I sometimes feel a fullness in my hand joints when I curl my fingers and I look for tell tale signs of nodules and deformities as my fingers stand at attention under my inspection. I am afraid of the medications in my ample embodiment of woman and I disengage from the thoughts of what the future holds for me. Four months ago, I was a wretch from my tormenting pain and surprised by the suddenness of it all. A misery I would not wish upon anyone and executed a disguise of my endurance. This disease was altering me so aggressively, that I was not recognizable to myself anymore. Where was that sturdy, vigorous, take-charge woman that I knew? The agony was excruciating. The loneliness was more inviting, yet, lacerating and extracted me from the human race. My advantage was my family and friends who kept in touch with me often with their talk of others with my affliction. I continued to help others in their time of need to keep me active in life since I was abruptly forced to stay home. In helping them, I helped myself heal and redirected my quality of health for the better.

Lord, give me strength

in tempering my soul, mind and thoughts with my children. My second daughter, Pua, went AWOL last night from the facility where she was a resident. Her sometimes boyfriend, Adolpho, drove to Sacramento, picked her up and brought her to his place in Redwood City. Then drove her back to my home to spend a few days with us. It is always a problematic reunion between Nani (oldest daughter), Manny (only son) and Pua (second daughter). Nani and my son live at home with me and Pua abides her time in and out of mental facilities and group homes. She has been out of my home since she was diagnosed at 16 years old with schizophrenia, depression and was made a ward of the state at her request. Now at 23, she infrequently comes home and when she does, it can be very chaotic at times. Her facility environment consists of a tumultuous, boisterous and many times violent atmosphere to where she has her guard up twenty four hours a day, seven days a week. Patients that she may call her friend one day could end up fighting her the next day without any explanation or provocation. Tempers flare quickly and often in crowded facilities like hers. Word of her escaping her facility last night was a phone call to her siblings and they in turn, called me at work. The questions, fears and worries of how Pua will manage without her medication. Pua's fear and loathing of not wanting to go back to her facility. Everyone looking at Mom and what I decide to do. Tired and wearisome, I can only go by the moments in time. Planning ahead in this particular situation is meaningless. Erratic, Nomadic and unpredictability is Pua's modus operandi and just cause for not planning. Where will she go from here? It is anyone's guess.

A few days ago

I self injected myself with my second dose of Humira. The first one was in December in the presence of a nurse at my doctor's office. It is entirely different having a nurse eyeball you and injecting yourself on your own with this type of pen needle device. It took me approximately one hour to talk myself into the procedure. Yes, I'm a scaredy cat when it comes to needles. I don't freak out, I just don't like them. I'm hoping that this would be more effortless in the future and I'll be more tolerant of my feat.
I'm still on 2 prednisone/1 folic acid/1 metaplex multivitamin daily and 4 methotrexate on Wednesday, every week with no side effects. I've gained back my weight what I lost before going on my leave which is approximately twenty pounds. My stiffness had gone from my fingers upon waking in the morning and I can move much better since being on Humira. I try to eat breakfast most mornings and being consistent with Oatmeal or Malt-o-Meal and a piece of fruit. Since I've been home, cooking has been a wonderful process for me and especially my son since he is the main benefactor of my cooking. Recently, I bought a juicer from my local goodwill store down the street from me and it has been a much needed item in my household. I juice everything, vegetables and fruits. With the left over pulp, I blend it up with a mixture of ice and yogurt to make a nutritious smoothie. I do know that I have to start on an exercise regimen. Daily chores, laundry and washing the dishes does not count. I have to get my heart rate up and start toning up my flab if I want to live a little longer than the way that I'm going now with my health and pain management under control. Soon, I'll be starting back to work and my rat race begins forgetting my good "old habits" and acquiring and sticking to my great new habits.

Doc meeting

went well. I'll be taking the next phase of the medication next week. I have to take a TB test to make sure that I don't have the TB virus because this next phase of my medication can bring it on if I house that virus. My RAtologist gave me three options to take the medicine, Humira. I can either have it administered in his office by IV and be hooked up for an hour, administer it myself or come in for a weekly injection. I chose the IV, not wanting to see any type of needle let alone administering it myself. He seemed disappointed and instead, he showed me this device that looked similar to a tampon applicator and that would be how I would take my meds. He took off both ends of the plastic caps (I still never saw the needle) and showed me how to inject myself either in the fat part of my stomach area or in my thigh. Then he pushed on one end of the applicator and supposedly the medicine would be injected through the other side. It looked very easy and stated that it would pinch a little. I decided to administer it myself once every two months versus an hour in the doctors office hooked up to an IV. He would have to check with my health plan to make sure they can pay for the medication. After doing some research, I found out that this drug can cost upwards of $12,000.00-$15,000.00 a year!! Holy Crap, they better take care of it. That's half of what I make as a part-timer! He also increased my prednisone because of the recent stiffness in my hand joint and the pain I've been in. Still, he has not taken any x rays of my bones or joints and I will make an appointment with my primary and have her take it. This RAtologist doesn't seem to think I need it and besides, he says that I have an aggressive form of RA. I would want to know where I am if I have any type of bone loss due to this disease. It's true that you have to watch out for yourself in this medical field. In the meantime, I've got a TB shot to watch for the weekend and am going to take it easy.

RAtologist

I can't wait to see him! I never thought that I would be saying that but in light of the way I feel, I need a shot of something to get this old body back into the swing of things. My "rhummy" has been really bad this week with the lessening of the prednisone down to half a tablet every odd day. Mostly when I get up in the morning, my middle finger on my right hand is now in a claw like position and hurts very much If I try to straighten it out. My pinky finger is swollen right in the joint area causing pain there. Walking has been a little difficult and it seems to lessen as my day goes along. My right ankle and knees are the ones doing the most complaining and it's definite that I cannot go from a kneeling position to stand upright anymore. I notice more sounds that my body is making now, the slight cracking of my bones in my movements of walk when I go from a sitting position to a standing position. Putting one foot in front of the other as the tiny bones in my toes even crackle. Weird and scary.
The turning of my head, I hear sounds within my neck attached to the spinal column crackling. It closely resembles the sound of a ripe watermelon being torn open, very slowly. I tried to explain this sound to my RAtologist but couldn't find the description for it until this post. Not being able to fully close my hand of palm means not being able to grip simple things like keys, and writing utensils. You take for granted what you already have until it's taken away from you. I'm sure someone wrote that and it's so true. Today is my dental appointment for my yearly cleaning and I hope they don't find my mouth too offensive. I'm sure they've seen worse. I have to let them know that I have RA since my last dental cleaning. There might be a different procedure that they handle, I'm not sure, it's just a precaution.
My Casino brothers, Mel and Jaz are taking me out to Hokkaido in Foster City today. It's a Japanese Buffet and it's very inexpensive. Succulent crab and fresh oysters, entrees of all types and the sushi bar is to die for. I really enjoy my time with my co-workers and friends and I'm glad that they think of me often since I'm not working and on disability, to invite me out. It gets me out of the house and keeps me out of trouble.

Reducing my medication....again

yes, now I'm down to half a table of prednisone every odd day until Dec 12Th when I go back to see my RAtologist for the third phase of my medication process. I've been very tired and it seems that my hands joints have been stiff in the morning when I wake up particularly my right hand. A few days ago, I favored my right leg and limped around for most of the day. It was terrible. I had visions of not too long ago when I couldn't even walk and had trouble getting out of bed. I couldn't even roll over and my hands were very swollen as was my ankles and knees. I don't want to relive that again. Going from a strong woman who could throw 7o pound bags around was no problem and now, I couldn't even open a jar of peanut butter! Here is my medication this week:
half tablet of prednisone - every odd day/5mg
4 tablet of methotrexate - every Wed/2.5mg
1 tablet of folic acid/1mg
1 tablet of Hema-Plex multi nutrient vitamin.

My rhummy

is acting up. I woke up this morning feeling stiffer than ever in the right side of my body. My right hand is very stiff and my right ankle is a bit swollen making it difficult to walk. Many times a hot shower does just the trick and I feel as if the RA is seeping out of my body only to return a short time later to settle back in only fiercer. I can really feel the effects of the lowering of the prednisone which I'm down to half a table each day until Dec 1st. Then I go back to see my "RAtologist" for a check up and to start the 3rd phase of my medications.
I have to gather up some paper work sometime to day and get that to my friend, Sarah, who is going see if I'm able to take out a loan on my home. Also, on that note, I have to send in some paper work to my employment to see if they can help me out for the short time that I'm out of work. We have a fund that helps employees out in a time of need, like a welfare system of our own but you don't have to pay anything back. Contributions are accepted and employees that can, take full advantage of donating to the fund. I told myself, If I ever go back to work, even if I have to donate one dollar, I'll contribute to the fund.
I had an enjoyable weekend. I saw the final showing of "Stardust and empty wagons" on Sunday with the Evan's Family. It was even more heartfelt this time and as always the cast was great. They've been portraying the Katrina families for the past year in different cities and to finally have this come to a close and back to San Francisco where it was borne, it has come full circle. There was a cast party afterwards which the Evan's attended and I left to meet with Darrell and Stephanie in Burlingame for drinks. We talked about work and when I'll be back and the party coming up at our friend Gail in December. It's our annual get-together that we try to make yearly at someones house and it will be the white elephant theme.

Stiff joints

this morning. It seems that my "rhummy" is back since the lowering of my prednisone medication and I am feeling every little ache. I'm on half a tablet until December 1st and still taking the folic acid and vitamin daily. The methotrexate is still once a week at four tablets. It hasn't been easy this week. My once swollen ankles are back especially the right ankle. It is much harder to walk today than the past days. There is a varied amount of stiffness in my finger joints as well as parts of my back but I'm trudging along in my day just a little slower than usual.
I've been to the play "Stardust and empty wagons" three times since it has been back in San Francisco. It is a wonderful production of talented cast members portraying actual Katrina survivors from Hurricane Katrina. Live music by the Hot 8 band is not to be missed, they are an awesome band playing beautiful rhythm and flavors of New Orleans. The play is a heart rendering story about the lives of Katrina survivors and how they survived the hurricane and horrendous flooding, what they went through getting their families out of New Orleans and to this day dealing with the mismanagement of FEMA and where they are now. Listening to their stories unfold and told in a way that lets you embrace them as long lost family and to encourage their fight against a government that does not have a clue and can't seem to get it together in this day and age! The last day for the play is Sunday November 25th at the Brava Theatre in San Francisco. Take your family and friends to see it. You won't be disappointed.