Saturday, September 12, 2015

A Good Day

Today was good.  I am not sure if it was my attitude, just random good day or the new meds having a super human quick acting impact.

My doldrums yesterday may have been the result of proximal PMS.  When I complained to my dear daughter that for some reason the 'illness' had gone to my brain and I spent the morning doing the wheepy thing.  She said.."ha mom your right on schedule.  I woke up this morning with cramps."  Now I am on the final run to menopause (4 months and counting).  When I told a long time menopaus-er about this she snorted and said that just because the periods stop does not mean the emotional rollercoaster does..Geezz :).  Who holds all of these menopause secrets anyway?

I started the new medication.  a tasteless colorless ampule of liquid.  I just have a drink of water with the stuff in it.  Wait around for 20 min or so and eat or drink a meal.  I felt like I was taking a placebo really.  I have no idea if it is working but I feel good today.  Hopefully this is from the meds but the box says it can take several weeks to make a difference.

I got things done today-post office run, bank run, crochet for a pattern in the morning. :) Much more positive outlook than I had yesterday.

Thursday, September 10, 2015

Interesting How Frustration Brings on the URGE to Blog.

I just got off the telephone with the Mayo Clinic.  What is wrong with our Medical care system???   I know I should be grateful that I have the means/insurance to go anywhere for care but PULEASE..can we at least be clear about procedures in writing?

I am sure a back-up and fill in is required here.

Since last May the pain cycle has just been one continuous pain in my backside.  lymph swelling, pain moves fro hands, the neck, to shoulder, to stomach, to hips, to legs and even my brain at time (if my grouchy factor is anything to go on).  My GP has decided the prognosis is Mastocytosis.  Basically that means I am allergic to myself :)  well really all kinds of things.  Apparently how this condition works is that my bone marrow makes too many mast cells.  These guys hang around on the walls of my veins waiting to be called into action and then go on a kamakaze mission to take out whatever intruder shows up in my body.  The problem is because there are so many whenever I get the tiniest twinge of an intruder they go to work.

Because there are so many of these mast cells the bomb that goes off is bigger than it should be hence all of my lymp glands and stuff go into overdrive.  When the mast cells die the do something called degranulation.  This relases several substances one of which is histamine.  The rest of them are apparently unknown but they know there are a lot of those others.  The treatment is anti-histamine.  The problem is...guess what Tina is allergic to?  yup..Benadryl an anti-histamine.  There are others but I am a tad scared to try them.  My daughter takes one-I tried it.  My reaction was not as bad as Benadryl but it was a smaller version (twitchy like I had had 5-6 coffees and nerve spasms).  Additionally It didn't really cut the swellng/pain any.   I opted not to repeat it.  My GP has now suggested I try cromolyn.  This one is apparently a mast cell stabalizer. She called in a prescription and that is the plan for tomorrow's pharmacological experiment.  The pharmacy did not keep it in stock thus I hae to wait two days to get it.

The GP also suggested  I go to the Mayo Clinic where they are well versed in treating this problem. Now we get to the fun part.  She suggested I call and make an appointment for myself.   So I called..
Although their webpage says a patient does not need a doctor referral when you call to make an appointment guess what they require?  Of course..a referral.  So then I had to wait a week (because my doctor is good and gets you in) to talk to my doctor and then another week for her to get all of her paperwork together (it is approx 3 inches thick).  She then handed it back to me to send off.  Today I called to get specific delivery instructions and the woman on the phone said,  "oh your doctor has got to send the paperwork."  I kind of lost it in frustration and asked her what difference it makes...she provided no reponse just repeated.  The doctor has got to send it.  I said I have the referral..i have my records just tell me where to send it.  The woman repeated, "the doctor has got to send it....gahhhhhh. Is she really worried that I am some sort of a psycho record maker-upper patient?

Dear Mayo Clinic,

What the heck is your problem?  Your webpage clearly states that patients do not need a referral.  Is this a lie? When a patient is seeking treatment do you really think they feel good enough to mess with your clearly conflicting chain of command demands?  Can you please put a clear set of instructions on your webpage or at least talk to your PR people and make sure they understand that the medical care system is not patient driven and never will be easy, clear cut or straight forward?



A patient who has been in pain now for over a year, has been to see a crap ton of doctors and been poked a crap ton more.  She is not looking forward to more and is therefore not faking.

oh.. and she is at the end of her rope of patience

UPDATE on Weightloss:

Oh hey-I am now down to 192.  My ticker is broken but slowy losing weight.  Apparently weight loss is a side effect of this stuff.  Ha..first a gain because I thought it was the lapband giving me problems and now that I have a partial fill again all of the stomach junk does indeed make me want to give up food for good.  Can someone live on fluids?  I am ready to try.

I had a second visit with the endocrinologist.  I have decided he is rather crap.  He added another anti-seizure drug to the speed that I was taking.  I took it for approx. 2 days.  Prozac was a better weight loss drug that this kitchen lab mix.  Perhaps it is because I have so much else going on but I really didn't need to add those two crazy things to this mess that is my health.

Additionally I have decided I really don't like the guy.  Sure I am willing to put up with that if he helps but I have had it up to my eyeballs with specialists that are so busy they cannot get you in in a reasonable amount of itme (6 months between visits when he said I should come in every 3) and then when I am in the office he doesn't care if I might have conflicting health issues.  he wanted to hand out another set of drugs and send me on my way.  No thanks..I still miss my original lapband guy..sniff sniff.

Monday, May 18, 2015

UP and Down and Around

I am fed up with the illness gig.  a couple of weeks ago half of my toes on my right food went numb.  This occured sometime during the night as I woke up with them that way.  They are not quite as dead as the one on my left foot.  Those lost feeling several years ago.  They are still though..not with full feeling.  Rather tingly I guess is the best thing I can say.

Two days ago my hands spazzed out again and I am back to waking up with them folded close in a very awkward way.  I wake up in the middle of the night with sharp pains that feels like I am getting a nail spiked through the middle of my palm.  I loosens up in the morning so that I can use it for the most part but still hurts.  I am back to taking an Alieve in the morning.  By 3 pm the pain starts up again.  The past two days I have popped a second one.

The weight-went back up to 204 but lo and behold yesterday had dropped back to 202.  This go round  I can feel my clothing get looser is not budging over my belly.

My trainer guy left town to take a vacation, cycle in a race and see his daughter.  I have not worked out in 7 days (and yes I know I can work out on my own..I am LAME).  I have walked a bit.

I am trying a week without wheat to see if that helps my hands.  If I can manage a week I will do a second.  Oh and yes..the pain could be coming back because I quit exercising.  I am just going to try both at the same time and see what happens.

Sunday, May 3, 2015

Down 2 :)

Just a quick update.  I popped on the scale and was down 2 pounds.  I am really surprised because frankly I have gotten used to the stability that 204 had become.  I am not complaining that is for sure :).

Today was pretty good.  Just a bit of hand pain and numb toes.  I took a single alieve and was good for the day.  Sooo much better than last week.

A Little Roller Coastering

Nothing lasts forever right?  Since I last posted I have ridden that ride back into a pain-from-hell and now apparently back into a pretty good place.  I am actually pretty happy it was a short trip (much shorter than the last session at any rate.

Around about a week and a Half to two weeks ago the almost pain free thing switched and I started getting some pretty bad stomach issues (gas, bloating, and the the poo was not its normal self).  I chalked it up to a bit of food poisoning or something and carried on.  So did the tummy thing and at the same time my lymph nodes really swelled up painfully.  The arm pain returned and my feet joined in with numbness every morning.  Needless to say I felt a little bit panicked at this point.

I got in to see my new regular G.P.  and we talked about this ongoing, never ending, never figured out ailment cycle.  She poked and prodded as they always do and then sent me off for more blood tests.  I reiterated my concerns about Lupis because of the family history and asked her what the odds were that my tests could have read as a false negative thing.  She assuremed me that more than one had been run and both read negative. So..we know its not Lupis.

The doctor asked me to go get a blood test (yes more).  When the order came David and I spent  a while looking up what all the tests were and what they were for.  Basically it was the fullmeal deal.  She is/was testing from liver problems to Kidney, to blood cancer and so on.  She says that after these come back she will decide whether I will need to do a 24 hour urine test (yet another way to check my chemical junk).  I am still waiting for blood results.  I am sure some of these have already been done but hey..if she finds something (that isn't too bad of course) than I am game.

By Wednesday I was in agony-peak tummy, lymp, no sleep pain-o-rama. I went in for a second visit to the massage therapist and he was so nice..did the lymph draino thing and said he wished a couple of times he could work it all out.  The morning of the massage I did not take any allieve but I felt so bad even right away after the massage I took the pain killer while walking back to my house. At that point I decided that perhaps the morning Mango, Carrot smoothie was impacting these things as it was the only thing that was different in anyway from before.

 and..on Thursday...

I Went back to a single tall latte for breakfast.  Back in the the coffee and out with the healthy (pseudo) protein and fruit int he morning.  I was pretty quickly better in the stomach department and by today (Saturday)  I am feeling MUCH better.  I had my now regular massage and felt great!  I did a whole bunch of running aroud dong errands and got tired but Grace the 13 year old was tired too :) so I figure we just did a whole bunch :).

I am popping back on to add to this.  It is Sunday morning.  I feel pretty good.  Since morning is when the pain tis is usually at its worst I can say the symptoms are OK-a bit of hand pain, my toes are numb on both feet but it is all tolerable enough that I don't feel the need to swallow a bottle of pain pills :)

weight and fitness update:  I have not lost anymore.  I am still sticking around the 204 mark.  My fitness is still improving though as the  massage therapist moved up to the third floor of the building he rents in.  I ran up those three flights yesterday with him to the office and guess who was breathing heavy and who was not breathing heavy.  I love out fitnessing a young guy :)  It is really good for this old lady's ego.

Sunday, April 12, 2015


This time around seems soooo slow but I am relatively happy thus far.

The physical training is continuing.  After my six weeks my trainer repeated his evaluation and I lost 8 or so pounds in the 6 weeks.. This loss did not read as fat the scale thingy indicated it was all muscle.  The trainer and I know that was not so thus we concluded that the scale failed to see the lovely organ fat that I probably lost.

My measurement changes were pretty wonderful-with a good 4 inches in my wait (my waist is the bane of my existence).  this waist thing bothers my newest doctor too (apparently) I drew this conclusiong from the number of times he waved his hand at my waist and commented on how us peri and post menopausal women must suffer from it.

I managed to do several more repetitions than I did on the first day and I ran around the entire park (without dieing).  The park is 1/3 of a mile and given that I have never been a runner I was pretty proud of myself.

Since the six week mark I have met with the trainer 3 more times and he is working me a little harder (I am not sure how I feel about this).  On Friday I manageded to run almost 1 mile during the hour workout.  My trainer Martin is pretty cool actually as he runs with me and does it nice and slow (even though I know he is gagging to do it at his normal pace).  After one lap he forces me to do stair steps, work out my arms with big old rubber band thingies and do sit-ups and then another lap..and then after more arm bending and steppy upping we run yet a third lap.  We did some stretching too (beginning and end).

I am now down to about 204-206 (depending on the day and the water bloat).  I would dearly love to get past that evil 200 mark again soon.

Pain?  well it is almost gone.  I am not sure what did it-as the exercise has got to be helping.  I am still getting one massage a week.  They are now prescribed by my doctor.  The masseuse does lymphatic draining methods to help employ out my hands (the main ones are just below your clavicle).  I also get my back, neck and shoulders massaged too-

Finally I have been trying to eat better.  Still no coffee!!!

In all I feel heaps better and whatever caused it as long as it keeps improving I am OK with that and will keep doing my part to build muscle and stay healthy.  The hands have only slightly ached at any given time and once when I sat down on the floor I had difficulty pushing off with my hands to get up.  I think I am going to do more of that..perhaps in this last 6-7 months my muscles have just weakened too much.

Finally-today I went curling!  one of my customers (neighbor and friend too!)  Curls with her husband so she invited a bunch of us down to learn to play.  It is pretty hard work and difficult to stretch out and push the stone off.  All together 9 couples come out to play.  Although I was sad he couldn't play one of the husbands had an injury and had to sit out and watch.  Thankfully he used this time to snap a couple of photos of us-
 I am holding my broom ready to sweep in front of the stone to keep it moving down the lane.
all of the group learning how to push the stone.  (it is a very difficult crouching position to get into).  I opted to use a push stick this time but I think I am going to practice with socks on my dining room floor so that I can manage it next time on ice.

Saturday, March 14, 2015

Finally a Little Movement

This morning the scale provided me with a little gem..210.  I will take it.  This round is much more difficult than the first time.  It feels like each victory is so long in the making.

The newness of the medication is wearing off.  I am still having the forgetful issues but felt a whole lot less jittery yesterday and slept in until 8:55!  I was of course supposed to be with the trainer at 9.  I dashed out of bed and thankfully we met in the park across the street so I was just a few minutes late. I was not the chipper person I was on Wed.  but Martin made me jog! and do all sorts of painful things.  I managed almost half way around.  Given that I have never been a runner this was a bit of a victory for me.

After the workout I had a meeting with my store bookkeeper (I love her!  I am not an organized person and she is getting me in line).  We went over the books.  I grabbed some missing statements and invoices and then she, Grace and I went to the bank and packed up a box of wholesale yarn to deliver to a local yarn store.  After that the three of us went to my favorite yarn store (well ok second favorite now as I have to like my own best).  We also checked out a bead store and had lunch at a local coffee/cafe that I like.

Since I own a yarn store I do not get out as much as i would like to other stores.  It was nice to see what other people had, how they laid out their stores and look at their kits and samples.

I was pretty hungry yesterday still-Breakfast was a bottle of water, mango orange smoothie (with no banana).  Have I ever said how much I HATE a banana in a smoothie?  Luch a chicken, gorgonzola and apple salad (I ate the chicken and a few bits of apple and one piece of lettuce).  I had 1/3 of a ginger molasses cookie.  I had an evening group in the shop so I had 1/2 a glass of wine, 4 chocolate covered almonds, and 1/2 cup of rice pudding after I was finished then bed.

Hand hurt more than usual today.  Not enough to take an Alieve but they ached most of the afternoon.    I have been too busy to knit so not much of that has been happening.