Sunday, July 18, 2010

So I'm just getting old??

For the past 3 weeks I have been poked, prodded, scrutinized, observed, jabbed, grabbed and lit up like a Christmas tree. And now I find out that all my problems could quite possibly be caused by my ovaries ceasing to function. Otherwise known as menopause.

Huh. I'd have never have guessed that.

I had a hysterectomy 11 years ago so that's why I had no *clue* if you know what I mean.

After the CT and pelvic ultrasound and all the blood work turned up nothing unusual, I returned to see my GYN and it's his opinion that the discomfort and quite possibly the buzzing could be caused by my lack of estrogen. He knows for certain that my ovaries have stopped working by the results of the blood work.

Everything else that all these doctors have tested for have turned up normal.

The first thing I did was to go home and cancel my colonoscopy. After meeting with the doctor who was supposed to have performed it and getting his opinion that, after viewing the results of my pelvic CT, he didn't expect to find anything unusual on the colonoscopy, I just decided to give myself a break.

They told me I can call to reschedule at any time and I promised myself I would, but I'm just sick of all the cold metal tables and the backless gowns. If I'm never going to again wear a backless gown that's covered with sequins an has matching shoes, than I'm not going to wear one that's one size fits all and still shows my butt. At least not right away.

If the buzzing were getting worse or there was more pain, then maybe, but right now I just want to relax and start taking the Estradial and see if it helps.

The GYN had a long talk with me about the Women's Health Initiative study clinical trial results about hormone replacement therapy and the big scare it gave all women in 2002 when the news had it plastered all over the place that HRT causes breast cancer and increases your chance of heart attack.

We discussed how the study which was supposed to measure the benefits of HRT in NEWLY menopausal women was fundamentally flawed because they selected women who were of the average age of 63 -- an age quite well past "newly" menopausal.

He gave me some literature and told me to go home and research it on the internet. Apparently he hasn't gotten the memo. All my other doctors have each, at one time or another, rolled their eyes, expelled heavy sighs, and told me to "PLEASE, stay OFF the internet, would you?!"

I've been doing very well this time around though. I think I really have learned some lessons about late night frantic, fear-driven searches for answers to the worst possible hypothetical questions. I just am burnt out on that kind of stress and didn't even bother this time.

That said, ovarian cancer had been rolling around my mind the past couple of weeks but I was good, and didn't Google the symptoms.

Because I already know that ovarian cancer, unless it's in late stages, doesn't really have any symptoms (or so I vaguely think I remember from reading about Gilda Radner a long time ago). So the buzz and the pressure/soreness symptoms didn't scare me into thinking it would be a close match.

So, here, on the eve of my 11 year old's 12th birthday, only 3 months shy of the 12th anniversary of my hysterectomy surgery, I sit contemplating on how age is catching up to me no matter how young my mind still insists on acting.

Who'd have thought a little estrogen might fix all my complaints? Doc asked if I'd been having hot flashes (check), night sweats (check), mood swings (check), achy joints (check), trouble sleeping (check)...

I think I'm going to start the Estradial. It can't hurt to try it for a couple months and see if it helps. I may feel a lot better or maybe nothing will change. For $4 a month (full Rx price with no insurance) I can find out.

If only Fingo were going to be that cheap...

Wednesday, July 14, 2010

An interesting survey

I know a lot of my readers are MSers and quite a few of you may also be members of If so, did you get the invitation to participate in a survey recently?

It was a survey titled "If you could choose the packaging for a pill for MS, would it look like this?" Normally I am hit or miss on the surveys I take. It depends on my mood. Sometimes I have even been know to delete emails from places like that without even reading them if I haven't weeded my email account garden lately and I'm going nuts trying to spruce it back into shape. I might have 100 unread emails and if they look spamy in the least, they're history.

Why I chose to open this email and respond before I even saw the title, I can only attribute to serendipity.

As I suspected, once I started the survey it was instantly clear to me that the medication in question was Gilenia, Fingolimod, FTY720, that Chinese fungus, whatever you want to call it.

There were 3 videos included showing 3 prospective packaging ideas.

The first one appears to be some contraption that is made of plastic, has windows where you can view your medication packets that are blister packed inside. You slide the guts out, push your pill through the blister pack, slide the guts back in, and tilt the whole contraption so that the pill "dispenses" into your hand.

The days of the week are clearly marked beside each pill so you can easily see which pill you need to take next and if you already took the one for today or not. Kind of like it comes in it's own pill minder box or something.

Now, I had copied all the questions and my essay type answers to a notepad file but got distracted by something before saving it. Then I forgot about it and went to bed. This morning I wake up to find my computer had rebooted after installing updates (I thought I had changed that setting! Doh!) and so I lost all my witty answers and their respective questions.

I did save a file that had the urls of all their youtube videos that they used in the survey. I am not sure what the ramifications would be if I shared them here as they were not shared on Erring on the side of caution, I'll just describe their use as I witnessed in the video.

The next prospective package looks like samples you might get at a doctor's office. The package initially looks like a little cardboard "book" and you open it up to reveal your pills -- all marked with the days of the week -- embedded in the book in a blister pack. You open it all up, find the correct day, push the pill through the blister and it falls into your hand underneath. You fold the book back up and slide the whole thing into another cardboard sleeve much like VCR tapes used to come in.

This one looks like a huge waste of paper to me.

The last one looks like any other capsule type medication you might buy like say Benadryl. Open the box, slide out the cardboard card with blisters on it, push the pill through the aluminum foil backing. Still, in my opinion, too much packaging.

What I told them in the area they gave me for comments on the survey is that I have been in this study for 3 years now and have only missed a grand total of 3 pills due to not planning ahead and being in the wrong place at pill time (all 3 times I was 30 min or more away from my pills).

I do not need a pharmaceutical company to tell me what day it is or when to take my pill. I can get a pill minder for that for just a couple bucks at CVS or Walgreens. No doubt it will cost much less that way than having my pills already come in some kind of pill minder.

I also told them I had taken Copaxone for 8 years prior to getting into the study and that stuff doesn't come all labeled with the days of the week.

I guess they mean well, but it's my impression that they are going to go with some type of outrageous packaging in order to justify the cost of what they're planning on gouging us for. If they are really concerned about the compromised dexterity of some MSers then perhaps the final choice with just the simple foil back blister pack might be the way to go. But really, anyone with problems getting their pills out of a bottle already has devised a way to do this for all their other medications, haven't they? Why special (read: costly) packaging for Gilenia?

They wanted to know my impression on how child-proof the packaging was at the same time, how easy it was to dispense for the intended patient.

What I want to know is WHY are they trying to reinvent the wheel, or in this case, the bottle?? See that bottle at the top left of this screen? That's what my medicine has always come in since starting this trial. They are not worried about impressing me with its looks at this point, so I imagine I'm actually receiving the pills in the most cost effect container at this time. It has a childproof cap.

Voila! Stick your label on it and call it a day.

I think most of us who have to take other things on a daily basis such as our multivitamin or prescription drugs will be able to figure out how to remember to take our pill every day. Please leave the cost of the hand holding out of the equation.

What we really need, that you didn't bother to ask, is to give input on how much we can afford to pay for this new medicine. Why didn't you ask about that, Novartis?

Keep your fancy Pez dispenser and just give me some pills I can afford. Thanks.

Nothing to report yet...

I've just been poked and prodded more and more.

I went to the consultation with the GI guy who's going to do the colonoscopy and he seemed confident after a preliminary exam that my test was going to reveal nothing profound.

Then I went on Monday and had an abdominal ultrasound. She spent quite a bit of time trying to isolate my right ovary for imaging and it was pretty uncomfortable. Of course she kept that poker face that all techs have to have and I didn't even bother asking if she saw anything. I knew the answer would be "I'm not allowed to say".

In any event, getting my digestive system "regular" again seems to have helped with the symptoms although I still get that fluttering nerve tingling "wack-your-funny-bone" feeling in my lower right abdomen so who knows. By the time they figure it out I'll either be back to normal or really ill.

I have let it go though. I'm no longer stressing over it. I just can't drain myself with worry that way. I think when you do that it only complicates things and increases any pain you might already be enduring.

When I get stressed my stomach knots up. My stomach already is uncomfortable so screw stress.

Now, when I find myself dwelling on all of this in an unhealthy way, I focus on my son and we do something fun together. Hey, if I can't fix what's wrong then doing something fun to pass the time is better than sitting in the dark and worrying. Either way the time is going to pass. May as well have a memory to show for it.

So I've been going to the beach a lot. I had forgotten how calming and soothing the sound of the gentle surf can be. And the cawing of the seagulls as they circle overhead. The sun is not exactly my friend, but we go early enough that it's still relatively cool out and the ocean is warm as bath water. We live on the side of Florida that is almost as far from the Gulf oil spill as you can get -- the NE coast. Even though it was reported that tar balls were found on the beach the other day (and ruled out as far as being from the BP spill) we found the beaches to be pristine sugar sand that felt luxurious on our feet.

Any stress I might have felt before just melts away with the sun, the surf and the gentle breeze in my hair.

And it's nice to see my son with a smile on his face, and no electronics were used in the creation of his happiness.

I'm thinking I get more from the beach than I've been getting from the doctors. At least I come away with less stress than more. :)

Thursday, July 8, 2010

Is there no help for me? LOL

I just read my last post and realized I was whining and complaining about being a whiner and complainer.

Ok, it's safe to some back because I'm not going to apologize any more. Take me as I am. I can't be any other way.

Love you all for hanging in there with me. Now back to my eccentric, hopefully humorous, reality.

Blogs come in all levels of hilarity, self-absorption, information, etc. I can't write like anyone but me, so I'm not going to try pretending.

Thanks for playing along. We now return you to the previously scheduled "As Jeri's World Turns".... we left off with her worrying about some undefined stomach pain and nerve twitching.

Will the doctors find out what's causing this?

Will she need surgery or just a good dose or two of Mirilax?

Stay tuned....

Today's Results

Since I had gone to my PCP and he had ordered the CTs of my pelvis and abdomen and then, the next day, referred me to my GYN, it stood to reason that something the PCP saw on the CT needed the attention of the GYN. (are you following this?)

Turns out there was nothing notable on the CT. Nothing abnormal about any organs and no sign of aortic aneurysm or anything else. No masses, nada, zip, zilch.

GYN did a full exam and then ordered a pelvic ultrasound which I will have on Monday.

Tomorrow I go to the consultation visit for the colonoscopy. One test I'm really not looking forward to, but as long as they are poking and prodding every inch of me, what the hey.

It may end up being MS after all...who knows. I do know I need to let go of the worry and of things beyond my control.

I really don't know how those of you out there who have severe disability can cope so well. How do you find the joy in living each day for all it's worth? You are my inspiration, I want you to know. I admire each and every one of you who finds the inner strength to face each day with a smile on your face and not dwell on the bad, but focus on the good.

I thought I was doing so well and had such a good attitude until learning that others see me as a complainer. I am ashamed of myself for being so blessed with the good health I have --compared to so many of you who have lost so much -- and I have been bothered by this all day. I will try to take into consideration that much of my audience consists of MSers who undoubtedly have more issues than I, and I will try not to appear so self-absorbed and whiny.

I do have it good. I am so blessed that my MS is so mild after 11 years. I do thank God every day that I can still walk, that I'm in this trial, that things seem to be going well for me.

I really am not trying to focus on something little and make a mountain out of a mole hill. I have just lost too many people in my life to stuff they brushed off as nothing, which came back to bite them and turned out to be something. I'm not going to let something this weird and abnormal just slide by with no explanation.

I've been writing this blog ever since the start of my trial and I promised myself I wouldn't just be a fair weather blogger, logging only the good things. Rather this is documentation (however interspersed with trivial, unrelated flotsam and jetsam) and all these tests are part of that process.

If this turns out to be in some way related to the clinical trial, I think those who follow along, wanting the unvarnished truth about a first hand participant's experience, deserve to be given the honest truth. Of course I can't hide the fear or whininess, but I'll try.

Hopefully I can get back to posting the hilarity of it all -- just as soon as I get my sense of humor back. I know it's around here somewhere...

My Apologies

To all those suffering from MS who have it so much worse than I do.

As you can see from Kim's comment on my last post, I apparently complain a lot. For that I am truly sorry. I know there are many who suffer far worse than I, and I DO thank my lucky stars that Fingolimod has brought my EDSS from where I was using canes and occasionally a wheelchair and had gone from relapsing every 3 months to not having a relapse in 3 YEARS.

I didn't realize I was such a complainer. I have, right in the tagline of my blog, admitted to being a hypochondriac and I'm a 9.9 on the Worrier Scale, but I didn't realize "Complainer" was my other hat I wear.

I don't do it trying to disrespect anyone else who suffers far worse than I.

And if you mean because I posted about the "buzz" I was feeling in my groin, and you think that it's a slight MS symptom that is unworthy of my worry, mention or complaint, then I have GREAT NEWS for you! IT'S NOT an MS symptom.

I had the CT on Tuesday and yesterday, while trying to shake off the worry and hang out with a friend to watch Avatar, I get a call on my cell phone from my GYN's office. Haven't spoken to them in about a year....

Apparently my PCP called them to refer me due to whatever was seen on the CT.

I won't know what's going on until after 8:45 when I go see him.

When I hung up the phone I immediately puked.

So again, I do apologize to anyone with MS worse than what I have. I am sorry that I appear ungrateful for the mild case of the disease that I have been blessed to endure. And I'm sorry that I whine about whether or not I'll be able to afford this drug which has given me back my life.

As it turns out, I may not have to worry. They may just pull me out of the trial.

Sorry to sound crabby. I don't mean to lash out. I would hate to be in ICU/CCU for MS symptoms of have ports installed for delivery of medicine, or have my child not remember that I could ever walk...

I started this blog to give hope, relieve angst, abate fear, and to let the world know that if I, The Worry Queen, can do it (the trial), anyone can. I hope in some small way I have contributed something others with MS felt was worthy of their time spent reading it. If not, my apologies.

Just because the things I fear are not as bad as what others might live, doesn't mean I'm not going to worry. Maybe I'll just do it inside my own head from now on so you don't read it as complaining....

Friday, July 2, 2010

What's the buzz all about?

No, not some new designer MS drug that I'm going to be talking about... but a BUZZ, literally, in my lower right abdomen.

The only way to explain this odd sensation is to equate it to wacking your funny bone (not so funny, eh?) really hard and that tingling, buzzing sensation that you get. That's what I keep feeling in my right groin and lower right abdomen area. It briefly shoots that buzz down my right leg and up across my side. Sometimes even causing loss of control of that leg briefly. I can't tell you how many times I have nearly fallen because of it.

I had a clinical trial checkup a couple weeks ago and told them about this sensation. The clinical trial nurse said she'd speak with the head neuro and see what we should do about it. Meanwhile I had an EDSS test performed (Expanded Disability Status Scale test) and there was no change, therefore they think it's not MS.

It's been getting worse over the past 2 months. I hadn't really thought about it much because up until I saw the study people I assumed it was maybe a new MS flare and I'd just let them know. After all, I have had Lhermitte's Sign before and that's what this feels like. However I did find it odd that the sensation was down the FRONT of my leg and not the back.

They told me I needed to go see my primary care physician. I saw him Wednesday and ever since I have been a nervous wreck. I can't eat, I can't sleep, and I daydream constantly about what it might feel like to die.

What did he say, you are wondering all alarmed? He doesn't know. There's not enough symptoms to make a diagnosis without a bunch of tests. So....

I have to have a CT of my abdomen and another of my pelvis, I have to have a bunch of blood work done, and I have to have a repeat colonoscopy because the last one I had was 10 years ago.

When I asked what it could possibly be, he said it could be any number of things ranging from ovarian cancer to a colon cancer, to trouble with gall bladder, appendix or a kidney stone. Until we have all the tests back, there's just no telling.

That night I couldn't sleep. I lay there in my bed, staring at the ceiling wondering if the answer is going to be a death sentence.

Another of the symptoms I noticed and mentioned to the doctor was that the nerve trouble seems worse with constipation and since I am pretty regularly constipated (hey! I just made up an oxymoron!) he's got me on Mirilax to try and clear that up.

My CTs were scheduled for 10am today and I called at 8 and rescheduled. I don't know if it's because I am frozen from fear (most likely) or that my rationale made sense, but I told them I wanted to give the constipation a chance to clear up so they could see everything clearly on the CTs.

Now I've bought myself time until Tuesday at 10:30.

The colonoscopy scares me even more. I hate feeling so helpless and vulnerable while being poked and prodded. I'd just as soon go on day in and day out having a normal healthy life, thank you very much. But that is not to be. Chronic illness sucks but something like this scares me even more... and until I know what I am facing I guess this fear will just keep me paralyzed.

See, it's my philosophy that as long as I don't know it's something terrible, I can pretend it's not. But the minute they sit me down to deliver news of something awful, I'm going to snap and just go into one irreversible panic attack. I just can't deal with it. Fear is awful.

And it's not getting any better. I keep telling myself it's just a pinched nerve, but there's a strange "fullness" on that side of my abdomen that makes sitting or bending uncomfortable. Not painful, just feels like when you are really constipated, only I have not had that issue in several days.

Ideally I would like to find out that it's a benign cyst that they can empty with a needle and I don't have to have surgery, chemo, radiation or anything else.

I'm just so freaking scared though...thinking about everyone I have lost to cancer in my life and how it seemed quite painful in the end.

I'll know more next week, so I'll be certain to post the good, the bad and the ugly.

Stay tuned. (What a cliff hanger, eh?)