Arthritis, Pneumonia and the Damage Done

Tonight I met with my trainer. We normally meet twice a month, but with my tax return I bought extra sessions so we have been meeting weekly. I think we will be meeting weekly though the end of May.

As you may know, I have been having problems with my hands since late November, early December, and while trying to get a correct diagnosis there, I was diagnosed with pneumonia at the beginning of February after being sick for 2 weeks and was finally cleared of that March 5th. And then on March 7th I  got into an arthritis specialist who diagnosed me as having some rare kind of osteoarthritis that has a fast onset, and is often misdiagnosed as Rheumatoid arthritis. I am now on meds that they give to Rheumatoid patients (and it is actually an anti-malaria med).

So it’s been a bad winter, more or less. Through all of this, I never missed a session with my trainer, though at the height of the pneumonia we might have postponed a week. My trainer, Amanda, sets up programs that we cycle through. One week is Stability week (the dreaded Bosu ball), then endurance week and lastly strength week. Today was the first time we have gone to strength since the beginning of February (right before the pneumonia diagnosis). Strength basically means that we are doing a smaller number of reps (10 instead of 15), at a higher weight and at tempo. Tempo means that you are pushing out at a 1 count and then back in on a 4 count.

I can’t believe what a toll being sick has done on what I can do. With the arthritis there were many weeks when I couldn’t grasp a dumbbell or a kettle bell, and so we often just focused on lower body, or water workouts.

Tonight I had to do inclined chest press with dumb bells. I could only do 12lb whereas 4 months ago I was doing 25lbs. Lat pulldown went from 65 to 50. Seated row from 65 to 50. However my legs all went up:  one leg seated leg-press went from 90 to 95 and single leg seated hamstring went from 45 to 50 – which is what everything should do on Strength week.

It has really been so frustrating. I know that the strength will come back once my hands get better, and I can build up the muscle again, but hate the feeling of regressing. All I can do is keep doing it.. keep on keeping on.

I also have to take in my food diary, which I am horrible about. I quickly printed off some pages from Lose it, and took those in. Unfortunately they were from the weekend which is when I struggle the most with nutrition. Her note written over it were “VEGGIES!!!!!!” and “PROTEIN??”

My work day is structured enough, that it makes it easier to make sure I am eating correctly. Get done answering phones, have my morning protein. Wait for the mail.. have my cranberries and nuts. Done with the deposit, heat up my lunch.  Without that structure on the weekends, I suck at eating correctly. I am not sure what I can do to change that. I need to do something to trick myself into eating right. The sooner, the better.

Just gotta keep on keeping on…

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Breaking down at 50

Turning 50 has not been a lot of fun, and I am sure someone told me it would be. I have blogged earlier about some problems I was having problems with my hands and my thumbs.  I had self-diagnosed arthritis just because it seemed to make sense. Earlier today I wrote an email to some friends of mine covering my medical journey since December or so.  Here is what I wrote:

This maybe my last email ever….

Well probably not, but damn I am on an unlucky streak!

So let me catch you up to date on “Susan’s Health Adventure”

As most of you know I have been having trouble with my hands since early December
if not earlier than that. At that time my Dr put me on an anti-inflammatory and told me
to give it 3 weeks to work… and not take any aleve while on it. It was the most painful
three weeks ever, and I actually cheated on Christmas day and took aleve because
who wants to be useless and in pain on Christmas! If I can’t unwrap presents and
fill a plate at a buffet, what good am I to this world??

So when that med didn’t work, I went back and told him that at this point I could deal
with the swollen fingers, I just needed something for the thumb pain. He put me in a
thumb splint and I was told to wear it for 2 weeks, all day except showering or swimming.
When I told me boss about it, her response was “Are you telling me that I am to pay you to sit in your office and do nothing for two weeks?” That was after I explained to her that I understood I would have to take it off to so some of my work. Sigh. I gave up on the splint quickly.

And then Pneumonia came knocking at the door. My brother thought I was having a heart
attack the day he took me to the walk-in clinic as I was in so much pain. It actually took
three doctors visits before I got the pneumonia diagnosis.  At one point I was sent for a ultrasound to see if I had a gallbladder issue, and that turned out negative but it showed possible the start of fatty liver. Bloodwork the next showed negative for that. That was also the day I couldn’t breath, which led me to the Walk in clinic the next day, and an EKG, Xray of the lung and possible cat scan. Cat scan was canceled as X-ray showed left lung pneumonia.  So all in all by the time I was officially cleared of the pneumonia I had probably had it for 5 weeks

The day I went in for my final x-ray I also decided to go back to dealing with my hands. Things
had gotten worse. My wrists were weak and I often had to use two hands to do anything, including
turn a door knob, brush my teeth, etc. And then I was starting to have pain in my right knee. Getting
up from a seated position was painful. I was having trouble sleeping at night because pain in my hands and arms would wake me up so much, And I was getting very depressed. I would start crying all the time. At the grocery store, at home. It took me forever to get dressed in the morning that I would finally get to my car to leave for work and just cry as I drove to work.

So that visit to the Dr, was, of course, the first good hand day I had in weeks! I think only one or two fingers were swollen, my thumbs didn’t hurt. That’s how it always goes. He sent me for blood work to see if I had any markers for Rheumatoid Arthritis. The bloodwork came back positive for inflammatory markers  so he referred me to an Arthritis specialist. They had no openings until May (!!) but while the drs nurse was on the phone with them someone canceled for the next day (YAY!!)

Btw this is what my hands look like now on a good day (though this is a picture of someone with Juvenile Rheumatoid):

This is my fear of what my hands will look like soon if Rheumatoid:

(I already have some small knobs on my first-from the nail- knuckle of my left index finger)

So a week ago last Wednesday I went to see him . I had never spent so much time in an exam room with a Dr in my life! My appointment was at 3 and I walked out at 4:30 and very little of that was waiting time. He took my full history. He was able to pull up x-rays that my Dr took of my hands in December.  Finally after everything he felt that I didn’t have Rheumatoid but a rare type of Osteoarthritis that comes on really fast. He wanted to do some more bloodwork that was more detailed than what my dr did to look for actual Rheumatoid markers but felt that he was right. They took 5 viles of my blood!

He put me on two meds. One Hydroxychloroquine is an anti-malaria med okayed by the FDA for
using in Rheumatoid. Its the one the have the best results with. He said they use also for Osteo
but it isn’t FDA approved for osteo, only because it is now a generic and no company
wants to spend the money to get it approved. The downside: It takes 3-6 months before you
can start to see improvement!!!!! MONTHS!!! Also one of the side effects is that you lose
your peripheral vision and your color vision. So I have to see an ophthalmologist every
year as they have special equipment that can detect that and see the signs early enough to
stop it.
I am also on Naproxen 500mg. He decided that since aleve did well for me he would just
give me a prescription for it so that would save me money, and it would work to bridge the
time before the other meds starts to work.

So I felt a lot better to have a diagnosis and a plan. The 3-6 month thing isn’t the best
but the naproxen seems to be helping and I noticed this last Sunday, Monday and Tuesday
that my hand and knee pain seemed much better, and I have had little swelling in my fingers.

On Monday I met with my trainer and we did a pool workout. One of the things she had me do
was this kick back that works the hamstrings. As I did one I thought “hmm that doesn’t feel right”
but kept on. I went back Tuesday and repeated the workout and when I did the kickbacks I felt
it again. A little worse. I assumed my sciatic nerve was acting up so I tried to do some stretching
exercises, etc to help it out. Wednesday, at work, I couldn’t find a position to put my right leg that didn’t
start hurting after a while. And getting out of my chair was really painful. I decided not to go back to
the pool that night and went home. I got no sleep at all. My whole leg from mid thigh to mid
calf was so painful. At work on Thursday it hurt to stay in my seat. Getting up was painful but
walking made it better. I walked a lot of laps around my little office.

Friday morning was a repeat. I get off at noon on Fridays so I called my Dr and made an appointment.
Apparently I screwed up a muscle and he called in a script for Prednisone (anyone watch Smash??)
I also told him that I felt he must be sick of seeing me by now, as I think I have been in his office more
times since the beginning of the year than probably the past 5 years combined. He said things go like
that sometimes. You’ll go forever without needed to come in and then sometimes its one thing after
another.

I started the prednisone today. 6 pills today, 5 tomorrow, 4 monday, etc… He said it will make
me really energized (will my apartment finally get cleaned?) and so I am to take a muscle relaxer
at night to help reverse that as well as any leg pain. I took 3 pills at 8am and the other 3 at noon.

I don’t know how it works or how long it works ,but I was able to sit down and write this whole thing
and not be in pain! The big question is how long was it take before the rage sets in and I start
yelling at Malcolm for looking at me wrong?

Anyway, with the luck I am having, I assume I will go stand out on my balcony and it will collapse,
or if I go to the grocery store, it will blow up or something so just in case, I thought I should
write my last email ever!

However I doubt any of that will happen and you will be stuck with me! Sorry!

So there you go. I turned 50 and am coming apart at the seams.

Opposable

Since about early September or so, I have been having problems with arthritis in my left hand.  I am left handed so it has been, well, rather inconvenient. Slowly it got worse and worse, until sometime in November I lost use of my left thumb.

It was no longer opposable. Just… well… straight.

Pretty much just like the picture above. 24/7. Painful and immovable.

As December came, it just got worse, and the right hand was also starting to show arthritis. Dressing in the morning became a chore, especially putting on my bra, tying my shoes.  Putting on gloves made it worse. Scraping car windows wasn’t pleasant, and pulling on my seatbelt made me want to bite through my lip. There were many mornings where I was crying as I drove to work.

Typing wasn’t too bad as the thumb doesn’t do much but hit the space bar. Writing was very painful, and so no Christmas Cards were sent this year. I had to use pliers to open up my pop bottles!

Finally I gave up and went to the Doctor who prescribed something called Rabumetone which is an anti-inflammatory for arthritis. He also had me go to radiology and have a series of hand pictures taken. The last one, the tech said.. now make an “Okay” sign. When i said I couldn’t do that, she walked over and with some sort of evil smile on her face (not really) she took my hands and made a damn “okay” sign. Ex..cruc..iat… ing. Ahhh.

And the medicine just made it worse. The doctor said a couple of things – give it a good three weeks and don’t take any Aleve or Advil. There were days during the past three weeks when I wanted to sit at my desk at work and cry. Every joint in my body started hurting. I had to have a friend wrap my presents for me. She also had to buckle my seat belt for me on a day we went shopping together (suddenly I was suddenly elderly!)

It all came to a head this past Friday night. I took a nap and woke up, unable to use my hands at all. I tried to cook dinner and could barely stir the pot. I couldn’t use the can opener and to open a little packet of taco seasoning, I needed scissors. I felt like I had no hands at all. Just balls of uselessness stuck at my wrists.

Luckily Saturday the hands were a little better. I decided to go to the gym and swim. I love to swim as often it is just me and a few people, and it is very meditative, just slowly swimming lap after lap. I spent 45 minutes in the pool and got out and did 10 minutes in the whirlpool.

I felt like a new person. My hands felt great. I also made the decision to stop the medication, three days before the 3 week mark. I was done with that.

And an amazing thing happened…

Is that thumb looking all bendy?? Why yes it is! It bends! It moves! No pain!

I can almost make a full fist on both hand too. There is still some tightness in the fingers but no pain and it is so much better. I got dressed today with no pain. I put on my bra, I tied my shoes and I put on my gloves. I scraped my windows and put on my seat belt. No tears!

I went swimming again tonight. And I can’t help but saying it…. I feel A-okay.

And totally opposable!