Nov 22: Health issues and Anger

Three weeks not working!  It seems unbelievable.  While I'd love to report vast amounts of progress on my list of 'things to do when I'm not working' it wouldn't be true.  Despite lots more sleep (9 hours a night!), a spectacularly healthy diet and not being around sick people I'm dealing with another bronchitis.  While not as severe as the one in September (which was really bad) it's taking a while to recover. Tire easily and coughing spasms when moving around much.  This is probably due to the combination of prednisone, methotrexate and now Plaquenil; all of these decrease the immune system, since the goal is to inhibit my autoimmune disorder.  The downside is the collection of side effects, including (but not limited to) decreased immunity, osteoporosis and eye damage. 

Ironic here is that my heart condition requires only Coumadin and twice weekly aspirin, but there are SEVEN medications now needed for the Sjogren's Syndrome.  Whenever I try to decrease the prednisone the lacrimal gland over the left eye enlarges, causing a foreign body sensation in my eye--not fun.  The good news is that the swelling around both my eyes is almost gone, visible only to me and the ophthalmologists, so hopefully now that the methotrexate and plaquenil are building up in my system I can start tapering the prednisone once the bronchitis has resolved. 

Reality of all the side effects was reinforced today at my eye appointment, because my retina needs to be monitored for damage from the plaquenil, although they tell me it takes years to develop problems.  But once you have damage it never repairs, even if the medication is immediately stopped. So after the usual exam & dilation they sent me for a fancy scan of my retina, so there will be a baseline to compare.  In an attempt to keep my eyes more moist the doctor zapped my right lacrimal duct with cautery in order to close it off, which will hopefully keep the eye moister.  The left side still has a plug in the duct that's close to 15 years old. 

The methotrexate dose remains at 15 mg, rather than the 20 mg goal, because of the severe nausea I get.  Have stocked up on natural ginger, ginger tea and ginger candies for when it's bad.  Sadly, eating seems to make the nausea better, which blows the hope of 'easy' weight loss.

And you were wondering what I was going to do with all the free time!

All of these issues have given me more incentive to really give the vegan thing a try.  It is difficult, and almost impossible to eat out with the additional issue of avoiding gluten as well.  My goal is to stick entirely to the plan when eating at home, take food with me if going to someone else's, but know that when eating out bending of the rules will have to occur.  I had lunch with a friend yesterday at a diner, there was nothing gluten free of the salads, not even vinegar, so I had an omelet  with veggies. I'm getting used to beans, now having at least one full serving a day of either garbanzo or white beans, will start working into navy, lentil & kidney.  The only 'cheat' of my days is 3/4 cup of 1% milk in my latte in the morning, and as I get stricter that may go by the wayside as well. 

The cardiologist's office dropped the ball, didn't send in the paperwork for the short term disability (STD), despite completing it and sending me a copy.  It's been taken care of, and on calling the company today my claim is already under initial review.  This is the first Friday with no paycheck and despite knowing that all of this month's bills are paid and I have savings it's still very unnerving.

Being completely honest (and that is the point of this blog!) I have to admit to feelings of anger.  They aren't constant or unmanageable, but they are recurring.  I'm angry at losing control over my body and the loss of control over my life that it has lead to.  I'm angry that I did everything 'right', followed the 'rules' that would lead to a career and financial security, yet now have to give up both because of factors out of my control.  I'm angry that in pursuit of that stability I sacrificed developing relationships, leaving me bereft of the support systems that most people have by my age.  I'm angry that my belief system of 'everything happening for a reason' isn't particularly comforting under the circumstances.  I'm angry that my dreams of what I wanted in my life are so out of my grasp. 

Anger is, of course, part of the grieving process.  Over the years of my illness I've learned that, at least for me, I need to acknowledge and even wallow in the anger.  There are times when it washes over me, wave upon wave of anger and grief holding me down, beating me to a pulp and not letting me up for air.

But then, from somewhere, comes a glimmer.  All of a sudden, after seconds or minutes or hours something inside of me pushes through the weight of despair and pulls me upward.  I honestly don't know where it comes from.  A part of my soul?  A Spirit Guide's gentle touch?  I start to see the good, the positives, the hope.  I start repeating my gratitudes, the things I am thankful for: I have a house, clothes, food, warmth, electricity, running water, a car, health care.....  How many millions of people don't have those things?  Yes, I worked hard and sacrificed, but in doing so it gave me options that I otherwise wouldn't have had.  Life is about change, adaption.  Perspective comes back and the anger recedes. 

My terror is the day that the glimmer doesn't start.  That glimmer, and its consistent reappearance, is what keeps me from giving up or giving in.  It is what separates me from becoming one of those people who become nothing but their disease.  That is what and who I do not want to be. 

Now would be a good time for a drink, but my liver is processing enough meds right now that it wouldn't be fair to add even a glass of wine to the mix.  So I will absorb myself by watching ridiculous things on TV, things that make me laugh, problems that are solved in an hour, hopefully with a cat or two tucked up against me.

Thanks for checking in,    Laurie

Nov 6: Leaving my job, new changes

The last official day of work was Oct 31.  In the Earth-based calendar that is the end of the old year, with Nov 1 being the beginning of a new year.  This follows the seasons changes: spring sprouts new life, summer with the bounty of the Earth, autumn with the harvest and readying for the dark months of rest and recovery, winter a time of death, but also of rest, recovery and gestating before the spring.  The cycles of Nature, the cycles of Life.  So, now I rest and recover, hopefully gaining strength to do more.  While it wasn't intentional when I gave notice Sept 3 it became apparent that the new PA would be good to go by mid-late October, and I liked the synergy with Earth's cycle. 

There have only been two days I would normally have worked, Monday & today, so not much of a change.  It's nice not getting up at 6:30 am, especially since I'm not a morning person.  But there is still so much catching up to do that the days are full, and the massive amount of paperwork/reports to be done for short term disability and getting the SSD (Social Security Disability) filed.  Collecting information, coordinating with multiple physician's offices, finishing one form generates another by the following day..... All necessary.  Hoping to have everything done by next week.  Have last week and this weeks paychecks for the 24 hours, but the following week will only be about 8 hours of left over vacation/sick time.  The three days sick in September messed that up.  So that will leave a 'dry' financial spot for a couple weeks before the short term disability kicks in (STD for short!). 

Some of the office staff took me out tonight for a 'farewell dinner', which was lovely.  Natalie, who has been the MA doing stress tests with me for five years, made a cute little picture book for me of the last days at work.  Linda, the ultrasound tech and very creative person, had several people decorate a sweatshirt for me, which she explained is to be used to keep warm and 'feel like I'm getting hugged by everyone' (sniff!).   Natalie circulated a card with strict instructions that everyone sign just the inside, then found a mat & frame that perfectly fit for display!  They also collected enough money for me to get one of the really nice tablet/e-readers that I've been wanting, complete with case.  (I'm currently taking votes on Nook vs Kindle, if you want to weigh in.  The one with the 'mayday' button is very appealing for a  tech challenged person like me!)  Lots of laughing and memories, actually made it through with dry eyes until the end when Judy, the office manager, got teary.  While I reassured her I'd still be stopping in (did so yesterday) as she said 'it won't be the same', a phrase expressed by everyone else as well. 

So, one volume ends and another begins. Kim & Susan were both texting me positives, but as I told them, I still need to grieve.  As with all of life it has its pros & cons.  Yes, it's for the best and I'm looking forward to less exhaustion, more time and energy to do things not done for years.  But it's not the norm at my age, not what I had thought my life would be at 50, not what my education was for, all my hopes and dreams.  It's still scary and uncertain--two things I hate.  But as my favorite frig magnet says: 'Life is not about how fast you run or how high you climb, but about how well you Bounce!' 

On the prosaic front: I never told you what the new rheumatologist (who is wonderful--thank you, Kim!) wants me to do:  go vegan.  That means absolutely no animal products at all: no meat, no dairy, no eggs.  The one she recommended, Eat to Live by Dr. Joel Fuhrman, also limits grains, oils and (of course) sugar.  There is growing evidence that eliminating all these things can really help with auto-immune disorders.  Kim has been doing it for months and says she feels wonderful.  It's going to be very difficult, so I didn't even try while still working, although decreased my intake of all the above.  Lots of fruits & veggies, plus beans (which I hate!).  Nearly impossible to eat out or at anyone else's, so will not be able to be strict in those circumstances.  (Had French onion soup with cheese, no bread and then gluten free crab cakes tonight!)  If I'm really good it could also mean significant weight loss, which my heart (and clothes!) certainly need.

It's after 11 pm now, so time to go to bed.  I'm trying my best to keep to a schedule, not stay up to 3 am and then sleep until noon.  Zerla & KC help, as they are used to their last feeding before bed.  It's very difficult to ignore two sets of eyes boring into you from 10:30 pm on, the frenzied furry leaping with even the vaguest of movements in the general direction of their bowls.  The hell animals can't communicate; and there is no question as to who has who well trained!

Thanks for checking in,   Laurie