Wednesday, October 5, 2011

Finding My Way Back

I can't believe it's been a year since I posted anything here.  The last post was about my surgery and lest anyone think I had complications from that, it all worked out okay.  In fact, my throat has never been better.  It's the rest of my body that went to hell in a handbasket.  To make a long story short it's just easier to give you a list of all the things I'm currently been diagnosed with and/or being treated for.   If you follow my blog, hypoxemia is where we left off when last we talked.  But here's the whole list:

Degenerative Disc Disease
Carpal Tunnel (both hands)
Reynaud’s Syndrome
Chronic Myofascia Pain Syndrome
Hyperthyroidism following thyroidectomy (still working on getting the meds right)
High Blood Pressure
Hypoxemia (low oxygen saturation and they still don't know why)
Pulmonary hypertension
Mild emphysema
Hardening of the coronary arteries
Central Apnea (both sleeping and awake which means that my brain forgets to tell my lungs to breathe)
Recurring Vitamin D deficiency
Hearing loss due to nerve damage, both ears.   (In addition to not hearing, I can't feel the sides of my face).
Type 2 Diabetes
Hyperviscosity (my blood has the consistency of honey)
Peripheral Neuropathy
Silent strokes (total of 95)

All that sort of explains why I haven't been around for awhile.    The biggest concern has become the blood problem which obviously could be responsible for a lot of the other issues.  It's so bad that when they do blood tests, they have to repeat about half of them because my blood is too thick for them to run their tests on it.  

I have a good neurologist who figured out that doing an MRI on my brain would be helpful.  When he showed me the films afterwards, there were all these white spots in my brain.  Some of them were pinpoint in size, some where as big as my fingertip.  He explained that these are silent strokes (strokes that don't cause a visible, physical effect like being paralized) and they're primarily centered in the parts of my brain that control my memory, language skills, math skills, and emotional control.   He started counting them so we'd know how many there were to compare it to another MRI in six months and when he got done, the total was 95.


I've never fainted from bad news but I think I came close to it then.  I remember babbling some silly shit about  "five more and I'd have a perfect score" which was just my tongue killing time while my brain tried to assimilate what he just said.  

It was a shock and still is.  They don't know why I'm having strokes yet..........the neurologist said it's not his field and sent me off to an oncologist after he found a weird antibody in one of my blood tests trying to figure out what's causing all the numbness/lack of nerve response in my hands, arms, legs, feet, and face.  

Now if finding out that you've had 95 strokes and seeing your brain looking like swiss cheese isn't enough to screw up your day, being told you need to see an oncologist for it takes you to a whole new level, especially when they don't tell you WHY.

Why is such a small word but it is has such an important role in life.  If we don't ask why, we're doomed to  oblivion and the only thing worse than oblivion is ignorance.  I refuse to live in ignorance, therefore I ask "why" if I don't know the answer to something, especially if that question is "why do I have to see a cancer doctor?".    The neuro said that he'd found an abnormal antibody spike in one of my blood tests but I'd need to ask the oncologist what it meant so after spending two weeks waiting to get in to see him and worrying about all the possibilities, I asked the oncologist "Why?"

He told me that it was a really long list and too much to go into.   I asked him what he was testing me for and he refused to answer that either.   And since he's a hematologist (blood specialist), I tried to talk to him about my little problem with the syrup running thru my veins; the strokes; the way my blood won't carry oxygen---all things that fall under the heading of "blood doctor".  He told me that he didn't care about any of those things and refused to discuss them with me.  He said that all he was going to do was run the same test my neuro ran to see if it was a fluke or not.  He suggested that I talk to my GP about these other issues, told me to make a follow up appointment in 30 days to get the results and then he walked out of the room.  

OMFG.  I've never come so close to hitting another human being in all my life.  I've had two pulmonologists and one of the nation's highest ranked cardiologists run thousands of dollars of tests to try and figure out these problems and he's referring me to a general practitioner whose capabilities pretty much end with flu shots and throat cultures?????  I managed to get out into the parking lot before I broke down sobbing, more from frustration than anything else.   I've talked to two other doctors about his behavior since then and they both said that it was just plain abusive.  

Fortunately one of the other docs was able to refer me to a good oncologist who is able to see me next week.    I found it of interest that when I made the appointment that the new doctor is in the same network as the asshole and the recep told me that she could see my test results were done and in the system so the new doctor would be able to see them.

Wait.  The results are already back after less than a week and that asshole told me to wait a MONTH!  And he obviously isn't going to call me with the results.  I've never thought of suing a doctor before (and I've had a few really bad ones) but the emotional torment that this jerk has put me thru almost has me considering it.  If I had any energy at all, I would.  

So that's where we're at right now with the blood/stroke issues and hopefully the new oncologist will be better.  For one thing, she's a woman.  I've come to the conclusion that the only doctors who are going to help me are women.   With one exception, the only doctors who have actually done anything except give up and refer me to someone else are women.  I have the world's best rheumatologist, a lovely woman who is understanding of the fact that even tho I'm upright and not bleeding, I'm still very sick.  I also have a new endo, a wonderful woman who has the mind of a scientist and the curiosity of a diagnostician.  She's the one who got me off the bad thyroid med and onto one that she discovered that I have diabetes.  You know, I've had five endocrinologists in the past three years and not a one of them even tested my blood sugar.  Turns out I have type 2 and she started me on meds right away.  One is a new medication called Victoza that I inject into my abdomen every day (that's not nearly as bad as it sounds) that is designed to help with the absorption issues and keep the diabetes from getting worse.  The great thing about it is that one of the side effects is weight loss and I've dropped 11 pounds in six weeks.   My glucose is getting down into the 120 range now so all of her treatments are working.  In addition to that she discovered my cholesterol is all out of whack and she's treating me for that AND helping with my blood pressure too.  You can just imagine how thrilled I am to have found her!  Seriously, I am more grateful to this woman than I can possibly say.  She's also the one who referred me to the new oncologist and if she says that doctor is good, I'll trust her.  

I saw my rheumatologist yesterday; three months earlier than I should have but that antibody they found in my blood can sometimes be present with rheumatoid arthritis.  My rheumatologist ruled that out a long time ago but with the neuro and the bad oncologist both asking me if I have RA, I figured I'd better get in to see her.  I'm glad that I did because she talked straight to me about what the oncologist might find and those are the first straight answers I've gotten since the blood test came back.  Yes, it could be something like a non-Hodkins lymphoma such as Waldenstrom's Macroglobulinemia, but it could also be a "monocular gammopathy of undetermined significance" or "MGUS".   That's more of a pre-cancerous condition that requires monitoring instead of a full blown terminal lymphoma like WM.   There's no way of knowing anything for sure until the oncologist sees me and does her thing, but at least Dr H gave me some hope and some solid information so I'm not just wandering around scared to death and freaking out.  And the endo gave me additional hope because she said she knows the new oncologist will behave like a proper hematologist and even if I don't have cancer, she'll be able to help me with my blood problems which will in turn make me feel a lot better in a lot of ways.  Of course that's in theory only right now, but I'll take any kind of hope that I can get.  

My biggest goal right now is to stop the strokes before I lose what I have left of my brain.  The doctor asked me simple math questions and I discovered that I can't even assign a value to a number anymore.  Numbers are beyond my comprehension as are directions and spacial relationships.  I don't know right from left, or up from down, or greater than/lesser than.   My short term memory is so shot that if I close my eyes for 30 seconds, when I open them I'm surprised at where I am!  My memory won't even hold that information till I open my eyes again.  That's disconcerting to say the least.   There are a lot of other effects that are scary.  It's also scary that these silent strokes are often found in Alzheimer's patients and my dad has Alzheimer's.   The thought of losing my mind literally terrifies me.  I can handle being sick and even dealing with cancer, but I don't think I can handle losing my ability to think.   

There have been a lot of changes in my life over the past six months.  I had a commissions waiting list that was over a year long that I've had to clear and am no longer able to accept custom orders right now.  In fact, I really haven't done anything except finish up some mostly done pieces like the modern living room and the steampunk ice box.  I did finally finish the custom Rosedale but I fear that unless things change it may be the last large house I ever build.  My Tennyson is still in dry fit on the studio work table and it's fully furnished even tho it's only taped together and not even started.  My goal is to finish it and build a Willowcrest for my BFF before I give up on 1:12 scale houses altogether.  If they can get me back on my feet again, I'm going to be working in half scale houses and dressed furniture in both scales for my Etsy store inventory with the occasional quarter scale fairy house.  It's a hugely reduced version of Deb's Minis but that's my goal and I'm doing everything I possibly can to reach it.  Right now I can't even have the door to the studio open because it breaks my heart that I can't be in there, doing what I love to do best.   However, for the past few months my days are pretty much the same:  I go from bed to the couch and back again.  There have been days when I couldn't even get out of bed.  

I've lost touch with a lot of friends and am not online as much as I used to be.  I'm still doing the Greenleaf Gazette newsletter because if I have to choose only one thing to do, the newsletter is it.  Greenleaf is transitioning some servers so it hasn't been sent out for a couple of months but we've still got issues ready to go when GL is ready to send them.   I've missed my friends but it's difficult for me to communicate even in the written form these days.  I also forget that I haven't replied to emails....or I think that I have because I formulated the answer in my head but never typed it.    Mostly I think I've withdrawn into myself because it's the safest place I can be.   I've had some personal issues as well, including a betrayal that ripped my heart out and left me in pieces emotionally.  So far 2011 has been a cruel and unforgiving year and since we're drawing close to its end, I don't have much confidence that it will get better.  However, I do have hope that in the next three months I'll get some answers and maybe, just maybe, some treatment for the things that ail me so that I can start 2012 on a much better note.

It's taken me several days to type this all out and I'm still not sure if I've corrected all the aphasia type mistakes in it but if you read for content it should make sense.  LOL!  I'm not using Facebook as much as I had been because of their new "drink the kool-aid" invasion of privacy policies but you can find me on Google+ under Deb Meadows Roberts.   There are quite a few of my friends who aren't on Google+ yet so it occurred to me that I could use my blog to keep folks updated and just post on FB and G+ when I've added to the blog.   I'm going to try and keep things lighter than this post in the future--today is just to catch everyone up to real time and it's pretty depressing.  I think the only joke that I've been able to come up with lately is telling my rheumatologist that if the oncologist expects to do a bone marrow biopsy on my super-dense bones, she's going to need a Black and Decker drill.      But instead of only using my blog to post major events (like finishing a dolllhouse), I'll use it to replace Facebook and keep in touch.  

It's good to be back on blogspot with you all.  I've missed you.  


  1. I was just telling my friend how I had hoped you were doing okay since you haven't been around. Even though you've still been having trouble, it is wonderful to hear from you. Sending you positive thoughts and warm hugs. Take care of yourself. :] You, too, have been missed.

  2. Good luck with the hematologist next week.
    It's good to see you back on blogger too. <3

    (I've added you in G+)

  3. Big gentle hugs to you sister. I hope next year will be a better year for you. I love you, Deb. Okay so which drill bit are they gonna use?

  4. All I can say is 'hang in there" at least they (the Drs) are looking. Your list reads similar to mine except throw in MS and lupus and now MG and still they keep poking prodding and shocking me.Lets fool them all and keep smiling and working in that wonderful place called miniatures. I am truly thinking of you and hope it can only get better.Lyn

  5. sending big (((hugs)))) for you is all i can do....onwards and upwards as they say :) Linda xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  6. Have hope. You are always in my prayers. I am fortunate to know a good friend of yours and follow you closely. I am confident we will meet. So you better hang in there and keep your humor.