Friday, March 10, 2017

The next step

Well, a couple days ago, I got the note from my assessment and it was copied and given to my doc. It has been copied and scanned into the system. So, now, what to expect from Dr. Primary? I checked the system and my Dx is still there. I will take some opportunity to think about how I will be addressing this with him. Honestly, I am battling within myself about leaving his practice and looking for another primary. What will I get if I go to another PCP? This is a great worry that I have. But, staying with this doctor worries me just the same.

So, what is this appointment going to look like when I see Dr. PCP? There will be some discussion, of course. Will he be on the defensive? Will he be agreeable? Will he ask questions? How will I prepare for this? Do I trust him anymore? Certainly, I am worried about this and I need to keep discussing this to see how this is going to work and progress.

We shall see how things go. I don't know what to expect and I need to really be in prayer about this.

Seeking. Believing. Praying.

Saturday, March 4, 2017

Remembering what I remember

I have to say that this is the first time that I have decided to look him up online. I looked on Facebook and I found him. I remember my Pastor telling me that someone called the church to say that he had died. According to my Pastor, this anonymous caller sounded much like him. Mr. D.L.A is still alive and he has a Facebook page. No, I would not send a friend request. No, I will not make any attempt to contact him. Looking at his picture is enough because I want to know what he looks like now, nearly 23 years later and to know what he looks like today.

This makes things very interesting. I am not exactly sure how I feel but I do know that looking at him is not as menacing as I thought that it would be. I am very frustrated but not to the point of breaking down. I feel odd, but not sure exactly how to explain it. This person changed my life forever and I don't want this to be over my head.

I will see how I sleep.

Looking. Seeking. Thinking.

Friday, March 3, 2017

I dreamed a dream

Well, it has happened again. I dreamed a dream that is one of my stress-dreams. I do not usually have those types of dreams, but when I do, I know what they are and why I had it. Stress? Yes, I have a huge amount of stress on me right now and I am looking forward to getting this stress reduced as much as possible.

So, what is going on that I have a lot of stress? I am so glad that you asked me about that. I have had these types of dreams since I can remember. But, they are as far and few in between. The stress that I have been experiencing is on many fronts. First of all, I have so many medical appointments. And, of course, with these appointments, you must be very careful about how you conduct yourself. Always, that is a concern. We do not get to mistreat the medical people who are willing to accept us to care over us. Too, they are not just there for abusive treatment; they are there to guide us through. But, what happens when they lose that mission statement? I have a very interesting problem with Dr. Primary. From the very beginning, he has been very demonstrative with his behavior. He is not afraid to openly express how he feels and will laugh at inappropriate times. When I had told him about these stress dreams, he laughed. Oh, sure. That is welcoming. I know when I have had enough of things and when they seem to be very burdensome, I have these dreams. So, I shared it with him. That is not ok to laugh at the patient unless the patient is laughing as well. I was not and so, I do not want to be laughed at.

Secondly, I have been trying to fight this PTSD diagnosis in my file. So, I had referred myself to a Psych eval; I did not want to ever do this and so, I had to do the only right thing. So, I took the assessment and inventory, and of course, no PTSD. NO borderline personality disorder. I am fit as a bass fiddle. So, after a month of fighting to get the results of this, I have been told that this is on the way. I have been wanting to fight this Dx so that it can be removed from my file. Too, that when it is time to go to another provider, I will have that in my records as well. Even if Dr. Primary does not change it, the record will show an assessment/evaluation and the appropriate Dx. Waiting on this document has been bothering me very much. More than I would like to say.

Thirdly, I have been having longstanding problems with my ears. I have been in a lot of pain and the pain has been through the roof. The last time that this happened was when I was initially given the hearing aids (HAs). I wore them for about three weeks and then the pain was so intense, that I could not wear them any longer. So, I took them out and from there, did not wear them for nearly four months. I am at that point again. I cannot wear the HAs because the pain is that intense. I went to urgent care because of the pain and was given new Rx for the ear infections. Counting the left ear as well, I have had 6 ear infections. Why am I having so many? We do not know. Mr. Dr. ENT has told me that he believes that I have been misdiagnosed every time. So, that means what? When I see him next week, we will get down to business. Too, I have asked for an evaluation of the HAs from the tech who helped fit them for me. I have been wanting to know if the molds/domes have been a contaminant for recurring ear infections. I have been treated for bacterial and fungal infections. So, why wouldn't it be natural to assume that the molds/domes might have a problem? We shall see. No one seems to think that there is a problem. Dr. Primary told me that hearing loss is not painful. Well, I beg to differ. I have been told that HAs do not cause ear infections. Well, the device itself may not, but the molds/domes may very well be causing the trouble.

Too, I have several procedures coming up that I am not thrilled about. I have a colonscopy, another nuclear test for Dx of gastroparesis. How fun! I have my next CT coming this month and this has been on my mind immensely. My labs are fine and they have been. But, no matter how many of these I have, I will always have to worry about the outcomes if they are not good. What is really bothersome is that we patients are not supposed to have any qualms about the procedures. They are a procedure and if we display any difficulties, or that we are not willing to have the procedure done, then there "must be a problem". We simply cannot just experience overkill with the amount of exposure to all the doctors. So, as it stands, I see Dr. Primary, Urology, Oncology, Naturopathy, Mental Health, Gastroenterology, Endocrinology, Cardiology, Acupuncture, Massage Therapy, Orthopedist, ENT, and Audiology. Cardiology is on a as needed basis. I had a stress test done and passed with flying colors. That is 14 different providers with 14 different appointments with 14 different potential tests and the like. Sure, Massage Therapy and Acupuncture do not do tests. They are for my overall health and elective.

There are a lot of demands. But, the most part, this pain I am not trying to get used to.
And then work. How do I look for new work and stay on top of these things? I need to relax and I need to be able to calm down and breathe!

Resting. Relaxing. Dreaming.

Sunday, February 19, 2017

Another day, another dogma

Well, after quite a while, I am blogging again. I cannot believe that it has been that long since my last entry. Well, I am going to try and keep this moving and be sure to add more entries.

What is the reason for my entry? Well, just recently, within the past couple of weeks, I had an appointment with one of my colleagues regarding a diagnosis in my file. When I had first seen my primary, and had explained some things in my medical history, he added PTSD to my file without addressing it with me. It is always good to address things with the patient so they are able to understand what is to come. I remember when he had wanted to send me to a Psychiatrist regarding all of this; but, it was not what he said, but how he said it. He was dancing all around waving his arms saying, "Oh my GOD, what you need is a psychiatrist!" Sure! This is going to make me feel very welcomed and eager to just move on to the next Doctor So-n-So! Well, I had said no that it was not going to happen.

When I had seen that in my file, I had wondered if that really was a concern for me. After a while, I studied what it meant and so, I had mulled it around. I had noticed that he had started to treat me differently--not willing to touch me with fears of "triggering" something in me. When I had told him, repeatedly, that it would not get triggered, he did not listen. So, I took the opportunity to make some changes. Having my doctor unwilling to touch me was very hard to swallow, but have had to. While the whole aspect of touching is passing, and it feels like a nightmare ago, things are very much so subsiding. I am currently waiting on some calls about getting a new doctor. I have not had a call yet. I am hesitant to go back to this doctor in the meantime.

So, I had this appointment with my colleague and guess what? The inventory and assessment did not indicate PTSD. So, when this was finalized, I called my doctor's office and asked about having this removed from my file. I spoke with the medical records department and they put in a request to have this removed from my file. Doctor sent me an email message and was very intrigued about this.  I realize that this is going to be a storm before it all calms down. But, I know one thing. I want this out of my file before I move onto another doctor. But, too, the letter that I will receive from my colleague will be in my file and that will be all the difference. No matter where I go, that letter will also be there in the file.

I was asked by my colleague how this would impact my relationship with my primary. Well, things have been challenging to begin with. I really liked this doctor but now? I am not sure and am very uncertain about when and how things will be changed. There have been many times that he has been afraid to touch me when examining me. His hesitancy has been noted. Sometimes I wonder if he was sick that day when they were teaching about patient care. Just the same, I am looking forward to resolving this matter. If I can, I will not return back to him. I hate to say that, but this is getting to me quite a bit.

Too, he never has discussed the rape with me. If he was so inclined to diagnose me, he has never thought to discuss this matter with me. I know, just like cancer, rape is not something that is just discussed over the dinner table. This was date rape and I knew my attacker. For many women around the world, they may not have known their attackers. I knew mine and that makes the victimization just a bit different. I do not trust like I used to. The violation is just that much different. If I had been attacked by an unknown assailant, that would make things worse, I am sure. I feel for the women who never knew their attackers. But, I knew mine. I am glad that I never have to see this person again. If I had to, I would move away and not ever return. But, my doctor. I wonder if he is afraid of discussing this with me. I don't like the idea that he is uncertain about this part of care.

My thoughts about him are very frustrating. I look forward to getting some clarity in these matters. I am looking forward to getting this letter and then from there being able to have it in my permanent record.

Listening. Waiting. Watching.

Saturday, July 30, 2016

Anxiety only comes when there are anxious moments

This is something I know for certain--anxiety. So, there are things that really bother me and get my anxiety stirred. Certainly cancer care and treatment can cause a lot of troubles and anxiety is one of them. I know for certain that I don't like bad appointments, multiple medical procedures, bad advice, and low blood sugars.

One huge anxiety that I have is "slipping through the cracks". This is simply the worst experience ever. In my experience, so far, there have been many professionals that just do not understand what to do. With the one doctor for my LNI, this was a horrendous injustice. Even this doctor's MAs had no understanding about what the laws said about the situation. This is something that does create anxiety, and did, because these young adults with minimal education and understanding are making medical decisions and providing medical opinions when they have no expertise, education or understanding.

I hate it when the doc will say, "I would like you to get some ...". This especially is a great piece of anxiety for me because my finances are very tight and I do not always have the extra money to purchase a higher quality supplement. For the most part, these supplements are very costly and to purchase them every/other month is quite demanding. I simply do not have the extra cash to do that. But, for my health, this is what I need to do.

Another frustration that I have that causes anxiety is when I have procedures that requires me to have IVs. I have regularly scheduled CTs. With those comes an IV for the contrast. If the tech cannot get a good enough draw, then they have to go for another one and continue until they either get one or I say enough is enough. This can result in many bruises that I have to cover up from work and so that no one will know what is going on. (BTW: that causes a lot of anxiety as well. I do not want anyone to know what is going on with me.). I simply cannot understand why someone would think that it is ok to think it wrong to be upset about what is going on. We are not supposed to be enjoying it. The last CT that I had was such an easy IV. I had to drink an enormous amount of water, plus double up on my K and Na to get the proper blood volume. I tell you, I had to drink about 72 fluid oz of water for the day. It was just miserable.

I really get bothered about bad advice. So, with the last doc's appointment with my PCP, he told me that he wanted me to get off all of my meds, except my cancer med, to determine what was causing my stomach pain and then to introduce them one at a time. Well, first of all, I knew why I was having stomach pains. This does not require a rocket scientist to figure out. If only the docs really wanted to know then they would be asking the right questions. They do not even figure things out. I had to write a letter to one of them about it. I simply do not have enough money to pay for supplements, food, bills and everything else. So, what goes to the way-side? Yes, food. I have not had enough gas money to get to the food bank and I am certainly not going to ask anyone for food money that I cannot pay back. I am not going to ask for food-stamps because I am paying for my car and the final few months of my lawyer. So, when they are all paid off, then I will be working to pay off the next few bills. Gotta love it! Right?!?! So, with this primary not asking me the right questions, then he would naturally assume that the medication that I am taking would be causing a lot of difficulty. He had also commented on "why the anxiety about all of these pills". Well, stop and think about it. I need to have these supplements for my health and for pain management. This doctor has no understanding about what he had said. Then again, he was very out of sorts when he had seen me as well. This was the week off the new stomach med and that both his RN and MA did not return important phone calls to me. Seriously, what are the odds that both of them did not contact me regarding a medication allergy. This is quite frustrating to me. I am not requiring a huge conversation; rather, simple acknowledgement that they will contact the provider and they got my message. Simple enough. But, that did not happen. With the amount of great discomfort that I have had, having the comfort of knowing that I was heard means a great amount. Anxiety? Yes. Pain has its own amount of anxiety.

I hate having low blood sugars. This creates a lot of anxiety in itself. It is part of the symptoms. But, do others recognize it for what it is worth? No. I wish that the providers would understand that I do not always eat on-time or regularly. I simply do not have the money for it. But, it is a catch-22. I need to eat for health. I take supplements that requires me to take them on a full stomach. Since I do not eat just anything, I will not eat something that will potentially make me sick. I do not eat soy products and so many types of foods are off my diet list. This can be quite frustrating because if I would like to eat a doughnut, that means that I would be eating something that can make me sicker than a dog. Soy is in most baked goods and it is used too widely.

I am learning. I must be very good at what I do. But, even more so, I must continue in the same way that I have been. I am eager to get beyond some medical providers.

Looking. Seeking. Hunting.

Monday, July 25, 2016

Sometimes there really is nothing to say but breathe

Today, my heart is really hurting. I feel at loss as to what to say. For the most part, I know that I am very upset and angry and am working carefully to not break down to tears. Honestly, I seriously am concerned about who I would break down with. This cancer trail has left me quite alone with very little friends to rest my head. As you already know, I have been working on trying to figure out all the meds and the docs. Several weekends ago, I had a very difficult time with a reaction and from that point in a lot of pain. I had called the Triage nurse and left messages. I had left messages with my MA as well. So, no responses back and I had brought this up with my Doc as well as the office. Today, of all days, my inquiries with the doc about my glucose strips and I get an email from the nurse that did not feel that it was important to give me a call back when I was in a lot of pain and discomfort. When I had seen the email, I was immediately inflamed. I just have no words to say that would adequately express how I feel. I am very upset and very angry. Having both my MA and RN not return my calls has been very hurtful. Not that they are my friends, because that is not what this is about. They are not friends; developing a strong therapeutic alliance with my medical team is very important. When they cannot fulfill a simple task that is necessary for my care, I get very worried and concerned. I am concerned that my care is too much for them and they are not able to take care of me. My greatest worry! I have had a lot of people leave because of this cancer. For them, there is a worry and concern that my dying will be very ugly and they would not be able to handle it. Some people just do not understand the loneliness behind this disease--this invasion.

When I am able to, I will certainly be asking my office personnel if my care is too much for them. Today, when I spoke with one of the office personnel, I did ask. Is my care too much for them? Certainly, I was told that it was something best answered by my doc. Certainly, I will ask and I am not afraid to hear the answer. When I told my Oncologist, she said that she hoped that the Primary would be a bit more "transparent". Yes, honesty goes a long, long way.

I know that my feelings run really deep. It would not matter if it was this doctor or another. I want a strong therapeutic alliance that I can trust and know that if something were to happen to me, I would be in good hands. At this point, I am not sure.

Sometimes there really is nothing to say but breathe.

Saturday, July 23, 2016

Difficulties upon difficulties

First of all, my most recent appointment this week with Oncology was fantastic! I continue to be in remission and, for the most part, there is no detectable evidence of the cancer! Wooohoo! 

But, my stomach issues persist. For the past several weeks, my stomach has been very bad. So, like a good patient, I reported this to my doctor. And, like a good doctor, he prescribes an increased dosage of a medication that the insurance gives a difficult time in authorizing. So, from that point, another medication suggestion, over the counter (OTC), then another prescription, and then? Of course, a reaction. From that point, having to get into communication with the doctor's office has been like trying to put an elephant through the eye of the needle. Sure the reference is a camel, but in this instance? An elephant. For nearly three weeks, the difficulties persisted. I was seen in my primary's office yesterday and we discussed this. What is so profoundly frustrating is that no one had called me back. Not that I am asking for something unreasonable; but, I am asking for some simple recognition that something has gone wrong. When I related these events to my primary, there were some very interesting comments, body language and efforts to compensate for the lack of services. Laughter. Yes, laughter is a great medication! It is medicine that we need on a constant basis. But, it is also a sign of stress or when there is little understanding about how to handle a situation. I have seen this with my doctor on multiple occasions. I would really like to know one thing: Is my medical team able to handle my care? Will I need to look for a more qualified office? Come the beginning of the week, I will be taking some time to discuss matters with the Office Manager and ask some very blunt question. I would like answers. I will get them.

Now, my upcoming projects are really set in front of me. While my cancer is in remission, I have been told that I have shin splints So, my next project is to figure out what to do for them. My doctor is going to refer me for imagery and from there what to do. This will definitely impact my jobs and with as much walking as I do, I need to be doing some other exercises. So, I was thinking, should I do more exercises in bed to compensate for this and to be off my feet? One thing for certain, I am going to get down to the bottom of things and to be certain to get my exercises in as well. I am really not thrilled with what I see in my medical team with this one and I need to be able to feel confident that it will be ok.

Hoping. Wishing Caring.