Trying to figure out the new reality

Trying to figure out exactly what is causing my RA (rheumatoid arthritis) to flare cause I would love to use my left hand damn thing hurts like a bitch even the oxy doesn’t work.  On the flip side all the other joints have been fixed with the Prednisone that was hurting before the hands decided to join in with the fun.   Sleep has gotten better I can actually fall asleep since the pain is in check still fatigued but not as much, basically for the last 5 months I have been groggy and very sleepy.   It wasn’t till my hands that sealed the deal that we could no longer hold off on the steroids.   What I didn’t know was that my platelet counts has been on a downward slide, thinking back the last time it was low is when they figured out I had Sjorgens. 

I think I may need to start asking for copies of my blood work, definitely want to get some copies of my scans, for fun so I can make thank you cards and funny presents for people.   Got a much needed Target Card last week, it paid for the majority of my meds for the month of June.  I just wiped it today when I picked up three bottles for $99. 

Just looking at my calendar and at the appointments I need to add, way too many appointments, also just scheduled my vacation, haven’t finalized exactly what I am doing just the dates.  It takes a lot more planning for any trip due to the amount of energy it acquires and the fact I am low on that.  Something that is trivial or simple like grocery shopping can wipe out someone with an autoimmune disorder.  We have to plan our day, our week are month around so as not to overdo and exhausted one.  This I have yet to learn that I can do what I did before cancer, a simple thing like being outside all day working can mean sleeping 15 hours the next day.  Although I will have to admit that I didn’t sleep on Thursday and Friday had maybe 4 hours which attributed to being totally wiped out Sunday.   I guess I am still trying to leave somewhat in denial land about the fact I have several chronic diseases that can’t be cured only treated as they flare and as the cancer spreads.    

I don’t really have much of choice know but to figure out what the new reality is……………………………….

Blood Plateleets On Downward Dive

Just  found out today after sending my doc's the latest side effects of abdominal pain which I narrowed down to food so sad bread and pizza are out of the diet effectively immediately, and then the bloody nose that keeps on giving.   Apparently I need to start getting copies of my tests because I just found out my blood platelets have been taking a nose dive over the last few months.  Which means basically it takes longer for my blood to clot when I get cut, bleeding gums and apparently my wonderful nose bleeds.

My Onc thought it might be the meds but the Rheum said it was my autoimmune disorder and he would keep an eye on.  Right now I am at the hospital to spend the night for a sleep study to see if I have Sleep Apnea.   Still waiting on an appointment with the eye doctor, also have to schedule a few more appointments, it looks like I have about 2 dozen appointments for the month of June and July.  Also need to schedule a vacation to be able to recharge before soccer season begins.

Good and the Bad

I can't put in words the night and day difference the predisone has done.  To be honest I haven't been this free of pain since my diagnose in 2008.  It really makes me nervous that this is only temporary only taking it till June 18th.  Will it fix the problem or will the pain just return, that is just one burning question, more than likey its parnoid but strange pinches and pains are coming from around my liver and the pain I had leading up to get the breast checked.

Although it has been great to have the energy to actually be able to go work, have a productive day and still have the energy to do a little shopping.  You just don't understand that for almost a year I barely had the energy to make it to work for a full day, let alone even attempt to do anything after.  A trip to the doctor was exhausting, I literally had to take the whole day off and couldn't take my usual early appts cause I couldn't sleep.  I still have to reschedule to appointments, missed my phone interview for a heredity study and have have two other appts I need to make.  Next week I will get my sleep study done.

Looking at the calender I am more than likely going to take the week of my birthday off, I have to double check with the boys before I put it in the leave system for approval.  In the past I usually didn't take much time off in summer except for 4 day weekends becasue I usually take most of December off.  Health wise that is not feasiable any more I need to recharge and get my body into a system a structured scheudle.  Thank-fully for the first time in a long time the soccer team has practice the same time every day, thank god.  Becasues M, W, F afternoon practice and T, Th before the sun rise practice sends Heidi body into a tail spin. 

From what I read it is important with Sjogren's in having a set schedule so the body get enough rest.  Slowly working my way back into a rhythm  The fog is slowly clearing, focus is getting a little better, still need lots of post notes and reminders, thank-full with the new work phone the calender is now in my pocket and alerts instead of alerting my from the desk top at home or the laptop at work.

The biggest thing is the pain in my fingers and now toes on my left hand side, the predisone has eliminated the inflammation but there is still pain.  It is frustrating not being able to open bags, pain when opening a freaking locker, ugh.  I like working with my hands building and designing different scales, HO, Playscale (barbie, monster high, Gi Joe, Dragon, DID, fashion royalt 1:6), 1:12 (dollhouse) and 1:8 (gi joe), I also like to write stores both long hand and on a computer.  I have note book full of stories and have decided to use my Playscale toys.  Yes my playroom well lets be honest my level of the apartment will make everyone's kids jealousy.  I love toys, to use my imagination to find interesting uses to items I see in stores or scraps from a junk yard.  I remember a project in art class in high school where we did sculptures by use random objects.  I decided to check the sand hole (neighbor hood dump) I found an old head light from a truck from the 40's, but that wasn't what I saw, It was a missile silo baby.  I found a couple more objects buried in the woods around my house.  I have a picture somewhere I will did it out and post later.  I remember it was auctioned at school and I got $100 from that thing.  It makes me wonder what if's, if I had choose to go to the various art schools I had been accepted to, though there was no way my mom would let me considering one was in New Orleans, another in Boston and the third in New York.

Now if I can get rid of the mouth sores on the roof of my mouth and the corner of my mouth everything would be good.

Ugh that time again the 3 month appointment

Tomorrow I get to spend the afternoon at the cancer hospital, not sure if it will be a short or long visit.  I have a feeling an x-ray of my hands my be on the agenda and a call to my Rheumtoloigst.  I carry the RA factor and one of the first questions I get is if my hands are swollen and my joints are checked out.  Well it it will be a month on the 19th that my hands have been swollen and my joints very painful some more than others. I have been wearing the arm brace which helps some of the swelling but does noting for the pain.  They seem to be gradually getting worse making simply tasks more difficulty and frustration, just today one of my coworkers asked does it hurt to write and type, the look on my face was all she need to know.   My pain medicine helps out some but not really, they are also ice cold a lot of the times, and beyond sensitive at times.  The knees, feet, ankles and elbows are joining in but not to the extent of the hands.

I have added new items to my diet that seem to be helping with the digestive system and energy, added blackberries, blueberries, strawberries, pineapple (limited burns mouth, but I love the taste), bananas and watermelon.  This has allowed me to work water back in to the system, meat rise I rotate between smoked salmon, shrimp, steak (stir fry cut), sausage, hamburger, eggs and bacon.  I am still not eating the amount of calories I need to start burning some of the weight I gained during chemo from the steroids.  I am going to see if the ONC doc can get me in with the nutritionist.  I know now that processed food and anything with additives does not do well in my digestive system.

My sister has started a small garden on our back patio, she harvested some potatoes the other day.  Potatoes are one of the foods we eat alot, her plan is to expand it to add onions, okra, watermelon, and tomatoes.   I told her we need to start going to the farmers market, because damn grocery stores especially Harris Tetter I actually had to walk out the same strawberries sold at food lion 3 for 5 was 2 for 7, really?  and the meat 4 to 5 food lion, 8 to 10 @ Harris tetter...NOT

It will be another 2 weeks before I get the sleep study done to see if I have Sleep Apnea.