Nunnie's Story, part 2
At 08:36 PM 1/29/98 -0500, you wrote:
My Dear Nunnie,
For Godsake woman dump that quack and find someone who doesn't think he's God. Your letter to me in my guest book so infuriates me I could scream. I am sorry for being so blunt but obviously this is the time to think about putting all the cards on the table. What you need my dear is to stiffen yourself, tell the quack to go to hell and find a new doctor and then, if your worst imaginings are realized, sue the bastard who kept putting your request for the biopsy off. I have to quit here I'm so damn mad. I'll write more tomorrow or possibly tonight. My prayers are with you and your family.
Have faith and think only good thoughts for it is only through good thoughts that we overcome adversity.
Personal Mail (firstname.lastname@example.org)
Home Page http://www.caninet.com/~charlie/
First of all, please accept my apologies for not getting back to you right away. Thank you so much for your patience. I get between 75-100 E:Mails per day, 75% of them are for fish help. I answer those or at least try to answer all of those each day. I start with the most important ones first... the ones where the person's fish might die. I have numerous text typed up so all I have to do is copy and paste. That way I don't have to type anything at all. If I am able after doing those, then I go to the next most important. When done with those, then I go to the next most important. With any kind of luck and not hurting terribly, I just might get them all done in a night. Usually I don't. Usually I get about 1/2 of them done and that's all I can handle.
On weekends, one of the fish places does not forward fish help messages to me so therefore I have time to try to catch up on the rest of the fish mail and then I start on my personal mail. I start with the oldest one first. I try like hell to get through them all over the weekend, but 99% of the time I don't. I type until I start to hurt, then I stop. When I hurt I usually go to bed and sleep if I can. When I wake up I get back on the computer and answer the next E:Mail and the next until I start to hurt again. I take so many drugs that I do sleep a lot. The pain may not go away, but I still sleep a lot because the pills make me very tired. I usually only sleep between one half hour to 2 hours. Once in a blue moon I sleep for like 12-14 hours. How I love those days/nights.
Things are actually looking up in the doctor area. I finally got my strength up and stood on my own two feet like you and so many others told me to do and I got another doctor and got rid of Dr. Filling"Quack". :) So, here is the latest that has been going on with me. I have copied and pasted the messages I have been sending out to my friends. I hope that you don't mind. It's much easier on me that way. :) So basically this info starts a couple of Monday's ago. Just as a little background I originally went in because I was having terrible problems with my hands and arms. My hands were not working right and plus I had a huge lump that I thought might be contributing to it.
I went to the lady doctor, Dr. Baird, today to have my stitches removed. This morning I discovered that the tumors have moved down both of my legs from behind my knees. Very painful. In addition a tiny one that we found on Friday on my shin has now grown into 3 fairly large ones. Hey and if that is not enough... the one she took out of my left arm is coming back.
The nurse removed my stitches and said the doctor would be in to examine me shortly. She is so darn polite, the doctor I mean, before she comes into the room she always knocks first. I think that is so nice. Well, when she came in I was crying. I apologized for being a baby and she said that was ok. I told her about the new lumps and she examined me. I then asked her if she had the biopsy back yet. She looked down to the floor and very quietly said yes. Well... I guess you know I TOTALLY PANICED. Her body language and all had me convinced that I had cancer. Hehehehe. But she immediately said, "Well, it came back as a just plain old Lipoma. I had thought that they would be Angio Lipomas since they hurt so bad, but they weren't." May I say that I breathed one heck of a sigh of relief? Hehehehe.
Then she told me that since I had been in that she had researched and searched everything that she could get her hands on regarding Lipomas to see if perhaps she had missed something or if there was something about them that she didn't know. Then she reiterated that she did not know why they are coming on so fast, why they were growing so quickly and why they hurt. I then brought up to her the possibility of going to Portland. We had a bit of a discussion about that, but I'm just too beat to go into all that. Suffice it to say that I was satisfied with her answer "AT THIS TIME".
Then she shocked the Hell out of me! She said, "I have a thought. Once a month, the first Thursday of every month, The Willamette Valley Dermatological Society meets here in Eugene. Dermatology doctors from all over Oregon come. Doctors who have patients that have conditions that are unusual and vexing present them at the meeting. All of the doctors evaluate the patients. The doctor brings the medical records with them. After all the patients are seen the doctors go over each case on by one to see if they can come up with something. I would like you to attend the next meeting if you would like. That way you could have a free second opinion from many different doctors."
If I hadn't already been sitting down you can bet I would have fell down. I couldn't believe it. I told her that of course I would love to go. I also was very gracious and I thanked her over and over again for being the ONLY one that seemed to want and to do something to help me.
So, I will be going to this meeting on Thursday, February 5 at 4:30pm. If these doctors know nothing, then I feel certain that they will have suggestions as to what type of doctor and who to refer me to. I'm very hopeful at this point. Dr. Fillingame never did call and say he had set up an appointment for me. So, when I am done needing him for referals to this woman doctor, I am totally 100% through with him. This is the end of it for sure. I will not be treated like this from a doctor. He should be out for my best interests 100% even if it mean sending me to every doctor in Oregon for an answer. But he hasn't and does not seem to want to. So this is the final straw.
I guess I will have to live with these Lipomas the rest of my life. I'm not sure right now. I hope that I can get to a specialist so that they can perhaps tell my why I am getting them, if I can get rid of them and how to prevent them if there is a way. The specialst lady, Dr. Baird, that operated on me said that the only cure for them at this point in time is surgery to remove them. She said that had removing the 2 she did had helped me, she would be more than happy to have removed them all, but she couldn't see any sense doing it since it did no good at all other than to relive the pain in those 2 areas. But... I don't think even if she wanted to remove them all I would let her. My gosh she would have to literally cut me up one side and down the other. A lot of them are in places that I don't think would heal very well either. Like on the inside of my arms and the backs of my knees. Those are places you are constantly moving or rubbing up against other parts of your body and that would be the pits to try and get it to heal.
The Next Installment!!!!!
Guess I should catch you up on the latest with me. I'm still getting more and more bumps, but what else is new. Hehehehe. I don't get so freaked out by it anymore. I'm actually getting quite used to it. They still hurt and the older ones are still getting bigger. But... I do have some good news. I have changed doctors. I will be going to a Dr. Whetzel. He is a fairly young doctor and I feel he would be more up to date on the latest things. The girl that sits next to me at work recommended him. He has been her doctor for quite a while. She went to see him a few months ago because her arm was hurting a little. He told her that she was getting the first startings of Carpal Tunel. He immediately took her off work for a week and then let her go back in a limited way. Good grief... I have been begging and pleading with Dr. Fillingame to take me off work so that I could hopefully get better and he wouldn't. I really feel at this point that this guy would be better. She told me many stories about things that had happened and what good treatment she got from him. I got to him Monday at 2:30pm. I hope I like him and hope that I feel comfortable with him.
From all she says he should be the kind of doctor that will refer me to some place that I should go for sure.
Then on the 16th of February I have to go to Salem. It is a town about an hour and 15 minutes from here. The workman's comp people are wanting me to see their doctor for a second opinion. I was a little freaked out by it at first, but I have since learned that this is something that is standard operating procedure. The are sending me to an Orthopedist (Hope I spelled that right. Hehehehe.). I rather thought they were bone doctors, but I guess I might be wrong. I wonder what he will think of the lumps. Since Salem is so close to Portland, I think I'm going to call my dad and get directions to where he is working now. That way I can go and see him and my step-mom while I am so close. I think Portland is about 30 minutes from Salem. I haven't seen my dad in 2 years about, so it will sure be nice to see him and my step-mom. I just love her. She is the absolutest greatest woman. So very different from my own mom. I actually really like this woman. She is real and not fake at all. She won't mince any words either and I respect that. :)
I was really scared at first, but not anymore. It concerns me for sure, but since I found out that it was not cancer I'm not near as afraid. I've just come to accept it. I've always had a positive outlook on it... in between the times I would get so darn mad at my doctor. Hehehehehe. I think I'm pretty tense and on edge a lot though. Sometimes I don't realize it until I notice that my body is all tight. I then try to relax if I can, but pretty soon I notice I'm all tight again. Hehehehe. I actually try to see the humor in some of the situations when I can. That helps a whole lot.
Monday, February 2, 1998
I arrived at my new doctors office, Doctor Jerry Whetsell, at 2:30pm, for my 3:15pm appointment. I had been asked to show up a half hour early as there was a lot of paper work to fill out. Rick, of course, filled out all the paper work for me as I haven't been able to hold a pen/pencil for long since this all started. The place was very nice and clean. The waiting room was very large, but there were only a few people there.
Now, you all know how it is when you go to the doctor and you have an appointment for 2:30pm and you don't get in until 3:45pm, right? Well, let me tell you, this place is totally different. We got in at 3:17pm. Amazing. I have had Rick come in with me to all of these appointments, not only for support, but because he will remember things the doctors have said that I don't. I tend to focus on certain things and while thinking about them, I tend to not hear some of the stuff being said. So, it has been very good to have Rick in there with me. :)
The nurse was very friendly. She asked me quite a few questions and then she took my blood pressure. My blood pressure was very high once again. It was 180 over something. This really concerns me since I have never had high blood pressure before. It has always been around 106 to 110. Since this whole medical problem has started, my blood pressure has been as high as 200 over 110 which is really high.
We did not wait over 5 minutes, if that long, before Dr. Whetsell came in. He introduced himself to Rick and I and shook our hands. He was a rather runny looking man. He was short and had funny eyes, but he appeared to be very nice. He is a pretty new doctor. He has only been practicing for about 2-3 years now. I was not real impressed with him at first because of his looks, but that quickly changed.
He then sat down and I proceeded to fill him in on everything that had been done to me and had transpired since this whole thing started on September 23, 1997. This all took around 45 minutes to an hour I would say. He never interrupted, but just sat there patiently and listened to me. He did not appear rushed or anything like that. He just paid attention to everything I had to say.
When I was done with my history, Dr. Whetsell proceeded to ask me a ton of questions. He asked all about my family background, other aspects of my health, and all sorts of things. This all took about... oh... 15-20 minutes. Then he examined me for a long time. He examined each and every lump, from top to bottom. When he was done, he said he would be right back because he wanted to look into something.
After he left, Rick and I discussed our feelings about this new doctor. We were both impressed with him. Rick liked him right off the bat. I, of course, took a little longer to warm up to him. :) We figured he had gone to check into medical books or something.
It wasn't long until he was back. At this point he examined me a bit more and asked a few more questions. Then he told me that he was going to put me on Blood Pressure medicine. A very low dose at first to see how it went and if that was not enough he would increase the dosage. He stated that he was going to put me through a whole series of blood tests to eliminate any possibilities of other things. He said he was going to do another Thyroid test, just to be sure. He then asked me why I was wanting to switch doctors. I explained to him that Dr. Fillingame had seen unwilling to help me. That he would not do a biopsy for all those months. That he did not want to send me to specialists. And finally because he had said the last time I was in there, "I am not going to refer you to doctors for the next 16 years so that you can find out what is wrong with you." After I said that, he just looked at me with a very strange look on his face and shook his head. I got the impression he found that type of treatment shocking... just as all of you and I have found it to be. Unacceptable!!!
Then he said the following, "When I get the tests back, if I don't find anything there, then I will refer you to an "Endocrinologist" here in town. If he doesn't come up with anything, then I have no problem with sending you to Portland." Ok... need I say that I just about fell off of the examining table with that one? WOW! FINALLY A DOCTOR THAT WAS WILLING TO DO SOMETHING TO TRY AND HELP ME!!!! UNBELIEVABLE!!!
Side Note: For those of you who do not know what an Endocrinologist is, it is a doctor that has something to do with glands. Since all of my lumps seem to start in the Lymph Glands, I am assuming that is why he is wanting to refer me to that type of doctor. :)
Once Dr. Whetsell told me that he was going to do these things, I thanked him up one side and down the other. Now, I REALLY liked this new doctor. He was willing to help me, unlike Dr. Fillingame. :) All total, he spent approximately 2 hours with us. That is unheard of with doctors in this day and age.
Then he thanked us and we thanked him and the nurse came and got me to take me to get my blood drawn. I'm totally terrified of having my blood drawn now because so many of my tumors are right there where they have to stick the needle and it hurts me so much, even without a needle being stuck in me. Not to mention the fact that where they draw the blood is where I had my surgery and that adds pain to the area as well. We had no more than, sat down in the lab waiting area and here came the lady to draw the blood. Again, just AMAZING. No wait times at all.
I went in and sat down. The lady put the stretchy goody that they always put on your arm to stop the blood. I told her and showed her how and where it was bad. She said, OK. Then, for some reason, I decided to watch her stick the needle in. Don't know why I did this as it is something that I never, ever do. I usually look the other way, but this time I didn't. I guess I wanted to know when to expect the pain to hit so that I wouldn't jerk my arm and perhaps break the needle off.
So, she puts the needle where it is supposed to go. She pushs on the needle. I keep looking at it, thinking that it has not gone in yet because I don't feel a thing yet other than a slight touch or pressure. I keep looking. No pain. Nothing. All of a sudden I see blood going up in the syringe. Oh my Gosh!!!! I could not believe my eyes. She stuck me and I felt nothing. It was incredible. I have never, ever, ever, had blood drawn without it hurting just a little bit... even before all these problems I had. But this lady did not give me even the slightest sting or anything. I have never been so happy in my life getting blood drawn. Hehehehe. When she was done taking 3 tubes of blood... I thanked her very much. I've never thanked anyone for taking my blood before, but I sure as heck thanked her and told her that she could take my blood anytime. Hehehehehe.
She started labeling the tubes of blood and then asked me when the last time I ate was. I told her. I asked her why she needed to know that and she told me it makes a difference in how the test results come out because food changes stuff in your blood. Hum... interesting. When the people at Dr. Fillingames office took my blood they never asked that. Since this time I have found out from someone who has Thyroid problems that they always need to know when you last ate for that test. Well, when I had my blood tested for Thyroid at Dr. Fillingames, they never asked me this. So... perhaps, I had a false reading or something on that test.
The only 2 tests I remember that he was taking out of about 15 of them or so, was a test for the Thyroid, as mentioned above and a test for Hormones. I had asked him why Hormones and he said that there is a possibility that if my Hormones are out of wack that it could cause strange things to happen in your body. He also told me that the blood pressure medicine could block something (Can't remember what) in my body and that may make a change in the lumps as well. So, basically he wanted to rule out everything and anything that it could possibly be before sending me on. :)
So... I left the doctors office a much relieved and happy person. Rick too. I have an appointment to go back to him in 3 weeks for the results of the tests and all. I, of course, will update you at that time as well.
Thursday, February 5, 1998.
Wahoo! The day is finally here. Now I get to be a guinea pig for a bunch of doctors from all over Oregon. Hehehehe. Yipee!!!
We arrived at the doctors office, Dr. Service, at 4:15pm. We had been asked to be there by 4:30pm, but I wanted to make sure that I was on time since I am the type of person that habitually runs late all the time. Hehehehe. The setting was nothing like I had expected really. I just went in, gave my name and the lady said the nurse would call me shortly. When she did, she escorted us to a room, just like I was going to a regular doctors appointment.
A couple minutes later, Dr. Baird came in and said hi. Then she examined me again to see all the new lumps that had popped up. Then she left. It wasn't very long until the first doctor arrived. He introduced himself... I gave a brief overview of what had been going on and he examined me. He then thanked me and left. A few minutes later, another doctor came in. Same thing happened. Several doctors came and went one at a time. Then one doctor came in. I started to give my overview when a second doctor came in. Again I started to give my overview when a third doctor came in. I started once again and a 4th doctor came in. Hehehehe. It was really disconcerting to have 4 doctors standing there listening to you and then 4 doctors feeling you all over your body at once, talking amongst themselves about you. Hehehehe. I finally just started laughing and blurted out, "Oh my Gosh... I'm a freak of nature." At that, they all stopped and just started laughing right a long with me. The only thing was just hilarious.
Well, at that point, I had remembered that my feet were changing colors. Ok... I know this sounds really strange, but they are. The top of my foot has gotten very dark brownish/blueish. Then there is a totally white space about an inch wide between where the dark ends and the toes begin. Then my toes are also the same color. So... I decided to ask these doctors if perhaps they would like to see my weird foot. Hehehehe. Of course, they all said yes. I was laughing the whole time. I think more out of nervousness than anything. Hehehehe. So I pulled my shoe and sock off. Here I was sitting on the examining table with just one of those silly paper gowns on that have no tie, trying to hold the gown on with one hand, holding my sock and shoe up against my chest with the other hand so that I could hold the stupid gown up high enough so they could see and feel the lumps on my thighs, while all these doctors are circled around my foot all touching and feeling my foot and talking about it. Hehehehe. Oh my gosh... you would just have to have been there to see this. It had to be the funniest thing I have every seen or was doing in my life. When they were all done, they all thanked me. I told them they didn't need to thank me, because I was the one they were helping and that I thanked them all VERY much. :)
All told, around 20 or more doctors examined me. We were there about an hour and a half or so. Each and every doctor had a different way of examining me. It was very interesting. The doctors ranged in age from ones that appeared to have just gotten out of Residency to one that was ready to retire. There was only one woman doctor. There were 2 doctors that really examined me a long time. One was the older doctor, Dr. Service, the one we were at his office. The other was a small Oriental gentleman. Very soft spoken, extremely nice. He examined me, asked a ton of questions and examined me again. He stayed the longest. I really liked him. Most of his questions were centered around my family to see if anyone in my family had ever had anything like this. I was very impressed with him as well.
After everyone was done viewing me then Dr. Baird came back in. I thanked her again. She told me that I could go and that she would contact me via phone sometime in the coming week to tell me what became of all of this. I also told her that I had a new doctor and that I was no longer using Dr. Fillingame. This did not seem to affect her at all. She was most pleasant. A lot more friendly and she even laughed at some of my jokes. I think it just has taken her a wee bit to warm up to me is all.
So, that is where I stand at this point. I truly enjoyed the experience. It was a lot of fun. I met a lot of very nice people. As we left, they were all sitting in the waiting room area and were just chatting. There were only 2 other people there besides me. I thanked them all again as I left.
I just know I have this whole new disease that has never been heard of and I'm going to be rich and famous because they will name it after me. Hehehehe. Then I'll get to tour the talk show circuit and 20-20 and 60 minutes. I'll get to meet Oprah and Geraldo and Sally. Hehehehe. I'll even get to be the star attraction on Hard Copy and they will pay me thousands of dollars for my interview. Hehehehehe.
Anyhow... that's all at this point. I was quite sore yesterday because of all the poking and prodding. I slept about 14 hours last night and I feel a lot better now. So, perhaps I can maybe... though I doubt it... catch up on some of my personal E:Mail that you have sent me. I feel so guilty not being able to answer each and every E:Mail that gets sent to me. I'm not used to this. Just to give you kind of an idea of how long it takes me to get a long letter off, I started this letter almost 2 hours ago. I have to take frequent breaks to give my arms and hands a rest before I can go on. So... hopefully you can understand why I don't answer all of your letters the minute I get them. I do APPRECIATE them ALL. I appreciate all the jokes that you have sent my way as well. And I appreciate you all for your support and caring. :)
Something else that was really exciting about going to the new doctor. Not only did he say that he would have no problem with sending me to Portland, but in addition, he started writing something on a piece of paper. When he was done, he handed it to me and said... "I'm going to restrict you to half days at work. I don't want you working over 5 hours a day maximum. I would prefer you work no more than 4 hours a day." Can you believe it? Isn't that just awesome. Finally a doctor that realizes that it is very harmful for me to be working 8 hours a day.
Oh and another thing that I forgot is that after he examined me he told me, "You have every indiction of 'Nerve ?????', but yet, all your tests came back negative. I don't understand that. They shouldn't have. I'm not trying to be rude, but you are big and your arms are way, way to small for your body size. That indicates 'Nerve ?????'. It doesn't make sense that your tests came back negative." I tried to tell Dr. Fillingame that my arms had shrunk way, way down (or Atrophied as it is called.) in the last year or so and he just ignored me. I didn't even think to tell this guy about it and yet he noticed it right off the bat. Now is that a good doctor or what? Hehehehehe.
When I go back to see him in 2 weeks I'm going to tell him how hard a time the lady who did my nerve conduction tests had in figuring out the settings and stuff. There were several times there where she would figure something and then say it was wrong and re-figure it. It could very well be that she set the machine wrong and that could have given wrong readings on my nerves. As much as it hurt and as much as I hate to and as much as I don't want to, I'm going to suggest that perhaps he have someone else do the test again. I don't think that is a bad idea at all. Another thing that would happen is that she would put the pointed things on my arm and then while she was setting the machine, the thing would slide down. She would not readjust it so that is also a possibility where she might have got invalid readings.
And another thing that was different is that he told me to wear my hand/wrist braces all of the time and not just when I type like Dr. Fillingame had me do. So, now I wear them all the time at work. I haven't noticed any difference yet, but hopefully I will. _________________----------------------_________________-------------------_
Well, that is it up to date as of Thursday. I should hear from the specialist sometime this coming week. I want to thank you for caring about my situation. I'm actually sorry that I have not kept all the messages I sent out to people starting from the very beginning. After reading your page on your beloved wife, I actually thought about doing the same thing in the hopes that it might help others. Unfortunately I did delete all of them almost. What a shame. :) Oh well. That's the way it goes. :)
Let me know if you would like to be put on my mailing list. I have a mailing list that I send all the latest updates to. These are wonderful friends that I have met on the internet during this time of my health problems. I would be very glad to add you to it if you would like to be kept up to date with the latest info. :)
Thanks again for everything. Don't worry, I did not take any offense to anything you said. I know that it is only because you care. Lord knows I listened to enough people telling me to get rid of my old doctor. I just felt like I was being disloyal or something if I did. Finally you and other people convinced me to make a change. Now I am very glad I did and I thank you for that and everyone else as well.
Well, I best end here. I'm finally getting a little bit caught up on my E:Mail finally. I'm only 10 days behind now. It's a really good feeling. I feel so guilty when I'm not able to answer my E:Mail like I used to. A letter as long as this one, if I typed it all from scratch instead of copy and pasting would have taken me over 2 hours. That is just terrible for me. I type 150+ WPM. So you can see how terribly frustrating this is.
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