skeye's update

Hello everyone,

I hope everyone has been well. Sorry that I have been pretty scarce the last few days, but I have been having a really rough time - both physically & emotionally. I will do my best to keep this brief.

I saw the neurophthalmologist again on Thursday, and he is very concerned about the neurological changes in my eye, but not quite sure what to make of them. He is sending me to a rheumatologist to look at the possibility of it being this one rare autoimmune disease (although I don't think it is). If the rheumatologist doesn't have much to say, then we are going to get a new MRI & look more seriously into MS. It was just an all-together awful appointment. On top of other things, which I won't go into detail about (I could write a book about all the things this guy did wrong in this appointment), the doc basically tells me "I think that there is something wrong with your brain; that you have some vasculitis of your brain & maybe such & such disease (i can't even remember the name at the moment - it's pretty abstract)" and then he LEAVES! Just leaves the appointment! He didn't let me ask ANY questions! I tried to ask one & he cut me off because he was more concerned about telling his nurse how to fill out a form than to answer my question. You can't just tell something that you think that something is wrong with their brain & then LEAVE. I was terrified, horrified, shocked, confused, upset. I tried to get someone to bring him back but he had "taken an emergency phone call." The guy is a jerk, to put it lightly. I pretty much knew that from the last visit with him, but this just pushed things over the edge. I didn't know how to handle what had happened & was really upset and almost in shock for the remainder of the day, and it really threw me over the edge emotionally. It took an hour & a half on the phone with my physician father to calm me down (he explained all the reasons why he disagrees with this doc's opinion, although he thinks that it is worth it to get the rheumatologist's opinion). I realized how much I had let my life fall apart because of this pain, and so we talked over a lot of emotional aspects as well.

I also saw my pcp on Friday. I love this guy to death. He asked me how I was handling things, and I mumbled something about my life falling apart & so he spent the next hour plus talking to me about every emotional & physical aspect of this CP that is eating away at me. It was really hard for me to talk about, but helpful - although I never really "opened myself up" emotionally throughout the talk. He made me promise that I would start talking to at least one person regularly about how I am handling the emotional aspects ( I chose my father, because he is the only one who even comes close to understanding) & that if I couldn't do that, then he'd make time to talk to me regularly. I have never had a doctor so supportive of me as him. He is really an angel. I was ready to call it quits with all medications, too, as I have not gotten any significant or lasting relief from massive doses of multiple opiods - although I was terrified to not have some glimmer of hope of relief to focus on. He is NOT ready for me to give up yet. He has some things in the works, and in the mean time, he switched me to the fentanyl patch (which quite honestly really scares me - due to the whole "lasting 3 days" thing & all the things that you have to avoid while wearing the patch). My response to the patch will hopefully be able to tell us whether my body just does not absorb opiods well, or whether I have malfunctioning opiod receptors in my brain. I fear the second of the two, but I think I am going to give this a try for a while.

Skeye

skeye
You know your post really did upset me, and angered me to know how you were treated! I really am sorry that your appointment went so poorly with your neurophthalmologist! Some doctors have such very poor bedside manner and really don't know how to properly deal with patients, I often wonder why they ever chose to be doctors to begin with! I am glad that you have a good PCP though, that is so important, and that you chose your father to be the one that you can talk to because you feel he understands, that is fantastic! You are very lucky to have a father that you feel that way about! I know this might be hard but try to be optimistic about the fentanyl patch, it just might be the answer for you!
Hopefully you will get some answers soon, but as you know if this thing with you eye is MS it might be difficult to get a firm diagnoses, at least right away. Maybe it would be a good idea to have another MRI!

skeye I do wish you all the best
Good Luck to You
White Beard

Skeye,

I am sending you lots of love, hugs and prayers!  You are always there for us, I hope knowing we care and are here for you helps!

(((((((((((((((((((((((((((((((((((((((SKEYE)))))))))))))))))))))))))))))))))))))))))))

XXOO
Patti

Skeye, Screw that guy! Karma will get him someday! I just wrote you a book and accidentally erased it! GRRRR. I'm sorry I didn't see this post until now as I was off the pc all weekend till now. I can't write all I did over again so I'll try to put it in a nutshell. I was so depressed after my prostate cancer surgery and went down hill for 3 1/2 years while doctor after doctor told me it's normal to be depressed, it's just in your head, take some of these pills, they will make you feel better! Everyone who knew me, friends, familly, and doctors thought I was crazy and I started to think so too. But I never gave up even when they told me, your just wasting your money, they (doctors) are all going to tell you the same thing! I was so tired of everything I came very very close to just giving up! It took a young Dr. with an open mind to finally figure it out. Hypogonadizm! 3+ years of low testosterone or manipause> castration levels of "T" which affects changed me physically for ever! But at least I knew I wasn't crazy, there was a physical reason for my suffering even though it took so long and so many doctors, $$$ and setbacks before I finally knew! The only reason I'm telling you this> (sorry to all who have heard it all before!) is because, they will find out whats wrong with you! Just by reading your words here, I know that you are a much stronger person than I ever was! I pray all the time that the next time I read one of your posts, it's gonna say>> They found it! They know whats causing all this eye pain and they are going to CURE ME!!!!! God bless you Skeye, I believe and when all your suffering is gone, you will be a better person for it all!
Your Buddy,
Pete

Skeye, you know we all care about you hun and let me add lots of hugz..
(((((((Skeye)))))))
I agree with what your pcp said about needing some one to talk to and sure hope
you look into a pain management psychologist, I know you've had rotten luck in getting a good one,
but promise me you'll try...
My warning to you on the patch is that when the weather heats up outside, the medication in
those patches can get into your system faster and make you sick....
Lots more hugz
your friend chart...
((((((((((((Skeye))))))))))))))))

Friends,

I just got back from spending the entire day at a dog show! It was a lot of fun, despite my eye misbehaving. This was my first show, I handled my 6 mo golden in the ring. He was so good - got 2 second's! It was a lot of fun, even if I didn't quite know what I was doing (I took a 20 minute handling class prior to the show & then had his breeder teach me how to stack him, but that was it). It is much harder to handle a dog in the show ring than it looks! I am pretty exhausted. Hours and hours in 90 + degree heat and sun will do anyone in! Between the heat, the poor vision, and the pain, I slept for 3 hr when I got home (that is as much, if not more than I usually sleep in one night)! My pup is wiped too!

I do want to thank you all so much for your comfort and support!! It means so much to me! Thank you all for having faith in me & encouraging me to stay positive! You guys really help me to keep going! I don't know what I would do without you all!

I am very fortunate for my pcp. I've only been with him for several years, and I had only seen him once before this injury - so he kind of got thrown on the band wagon, but ever since the beginning he has been so encouraging and determined. I did see a PM for a while, but ultimately decided to switch my pain management to my pcp, since he was more than willing to take over. I am so glad that I did. I think I'd probably be in even worse shape, in terms of the frustration, etc, if I had stayed with the PM. He was wonderful until he ran out of procedures to do on me. Then he really didn't give me the time of day (it was like he went from caring, to uncaring overnight). My father has also been a godsend. I don't talk to him very often, but other than the people here, he is the only one that I can talk to. He doesn't understand everything that I am going through, he can't, but he at least understands how the pain affects me on so many levels & how frustrated this whole diagnosis process is. I am sure it's probably because he is a doctor (who has a lot of experience treating CPers) that he understands so well, but no matter, it is nice to feel that someone understands & is on my side!

Pete & PA - I hope you two are right that they are going to find something & get me some answers (including a treatment). I sure hope it is soon!

Char - the heat is thing that scares me the most with the fentanyl patches. I have had one on since Friday night (haven't noticed anything, but then again we started on the smallest possible does, which is no where near the equivalent amount of medication that I had been taking). Of course of all times, we are in the midst of a heat wave! It was in the 90's today and yesterday, and is supposed to be in the 90's through Tuesday! I spent almost all of yesterday & today outside and was sweating like a pig! My poor body is in shock! It went from being about 40-50 degrees during the day, to 95 in all of two days! What happened to spring? We just skipped over it and went right into summer! But of course, it is supposed to be back in the 50's towards the end of the week. What can I say, I live in New England... I will look into a pain psychologist. I have seen one in the past, but it was just to learn biofeedback, and he was far far away from where I live. At least my regular psychologist understands some about CP/chronic medical conditions, because he has his own fair share of health problems.

Dagger - Thanks for that stat. That is very interesting. I'm relatively sure that I am one of those 8%. For whatever reason, I always seem to fall into that small minority of people who are not helped by such & such treatment.

Fatherjohn, Whitebeard, Kara, edt, & undone - thanks so much for the hugs and raising my spirits!

Skeye

Palady,

Thank you! However, I didn't add above, that one of the second places was out of 3 dogs, and the other was out of two (although the judge said that it was really close & could have gone either way). We got beaten by the same 12 wk old pipsqueak both times (it was a 3 - 6 mo old puppy class)! All I knew going into the show was what I saw on TV as well! I have watched a handful of dog shows on tv & watched our dogs' breeder show several of his dogs once, but that was it! It is much harder than it looks, especially since you can't really see what your dog is doing when you are trotting him, or stacking him. Stacking is that characteristic standing position that the handlers put the dogs into while the judge examines them. It is supposed to be a recreating of a perfect natural stand when they are at attention & really shows off the dog's body form. This show was just for fun, really. The breeder's golden retriever club was hosting it & it wasn't an "official" show where the dogs that win earn national points, but it was fun. It severed mostly as a practice show for inexperienced handlers and/or goldens. They also had obedience competitions. I probably won't show him again, unless maybe we go to the same show next year, but it was fun! I'm still not quite sure how the judging works. I know it is based on the breed standard, but it seems a bit political to me. But I'd do it again. I think I improved a lot from the first to second competition!

Skeye

Skeye,

HooRay for you girl. Every now and then I can pull myself up and out of chronic
pain by doing pleasurable activities. For me, it's shopping! Turn me loose in
Macy's for a couple of hours and I hardly remember I have pain. Unfortunately,
it returns, of course.

I sure do agree with PaLady when she says, "It sounds challenging for someone
with no vision or CP problems." Shopping is somehow smoother, climate controlled,
fragrant, and they always play my favorite music.

Specialists should take a class or two on how to to long with patients. The smarter
they are, the lower their score for social skills. I've found that true of the
two neurosurgeons I have visited and several (4) neurologist. I guess the
Rheumatologist was the level worst.

I don't go with high expectations any more. If a doctor doesn't meet my expectations,
I fire him/or her. They rarely know they've been fired, I just don't return. I
started a thread in here one time on "The Worst Doctor." I wrote a couple down,
and then I just couldn't stand to think about it any more.

Keep going,Skeye. Keep working toward your goal. You have a couple of wonderful
doctors in your life. You're lucky in that way.

Pamela

Thanks Char & Pamela! And, yes, PAlady, I own "Best in Show." Someone gave it to me a few years ago. You are quite right, it is hilarious!

Skeye