Wednesday, September 14, 2016

August Recap

Happy September. Hope your August was good. The weather was still in the 90's here the last few weeks but that all changed yesterday and are back in the 70's now. Looks like we have out first taste of fall. We finally got to go to Hudson Garden's last month. It is a place I have been wanting to visit for awhile now. The Denver Botanic Gardens is still my favorite but it was nice to see something different. This is one of the photos I took that day. This is the entrance to the Rose Garden. Unfortunately there were not many roses to see it was still beautiful though.
Sorry for the delay in posting this month. My doctor drama continues and has left me feeling very sad and discouraged. Emilia and I went to see the primary care doctor I talked about in my last post. It did not go well. She was very concerned with Emilia’s cholesterol results that were done at the other Dr's office in May. That doctor never said anything about them being high. When I looked at them they were only a few points off but this Dr. was very concerned about it which I thought was odd and freaked Emilia out. She wanted Emilia to alter her diet and exercise more. She also had her walk around the office with this pulse thing on a couple of times because she had mentioned how she gets light headed when she bends down. Basically all it told her was that she needs to exercise more. Crazy?
As for me she didn’t really listen to anything I said. She felt I did not have an autoimmune disease because all the blood work was normal and wanted me to go to an orthopedist instead of a rheumatologist this time. I told her that I did not want to do that and wanted to go back to Denver Arthritis where I was first diagnosed with inflammatory arthritis instead which she agreed to butI felt really frustrated with her because she was basing everything on blood work. She didn’t care about family history or my other health problems either. All she really cared about was my shoulder. She felt it is was a rotator cuff tear but that made no sense because I have never done anything to cause something like that. I also had a sore on my tongue that had been killing me the day before that which she saw but never said anything about it. When I mentioned it to her she was not concerned about it. Here suggestions for the fibro were to give the Gabapentin more time but I have been taking Gabapentin on and off for years. The only other things she offered me for it were Cymbalta and Savella neither of which I was interested in trying. I do not do well with those kinds of meds. She also didn’t know much about the LDN and was not able to help me with that at all. They did more blood work before I left that the last rheumy I saw wanted me to have to make sure the antinflamatories I am taking every day now are not causing problems. I got the results the next day and everything came back within the normal range again except my sugar was high but they didn’t feel that was anything to be concerned about because I had not fasted. I eat very little sugar though. I left there feeling hopeless and discouraged again.
 Later that night I was talking to my mom about what happened and telling her I had one doctor left on my list. She is in the practice that my mom goes to and I use to see a doctor there as well. She was the one that diagnosed my migraines over a decade ago. I stopped seeing her because she had run out of options for me. Anyways my mom told me she had just gotten a letter in the mail that the doctor I wanted to see now was leaving the practice. I decided to try Googling her to see where she was going and found out she was opening up a new Concierge practice with 2 other doctors. Concierge/Direct medicine is something I have considered in the past so I filled out a form to get more information. The next morning I got a call from the Dr. herself. I did not answer because I didn’t recognize the number but I called her back later. We talked on the phone for quite a while. She told me she was leaving the current practice because she wanted to be more involved in her patient’s care which is something I am definitely looking for. They are not opening the practice until October but was willing to see in her current office which my insurance would cover. In the meantime I called the old rheumy’s office to try and get an appointment but was told I would need to get records from the last rheumy I saw before I could see him again. I thought that was rather odd. They were suppose to try and get the records for me since I couldn't get anywhere with that office but they would not release them. I also got a call from the compounding pharmacy asking how I was doing with the LDN. I told them it made my pain worse and they suggested I try a smaller dose so they were going to try and get the Rheumy that prescribed it for me to write a prescription for a smaller dose. 4 days later the rheumy’s office called me to see what was going on and said they would ask the doctor about it she was out of town until Monday though. Once again it was taking forever to get something done there. It should not have taken 4 days for a response. Emilia and I went to see the concierge doctor. She did not agree with what the other doctor said about Emilia’s cholesterol which was good. She said it was perfectly acceptable for a person her age and not to worry about it. As for me she basically did nothing different than the other doctors I had seen before and was still in agreement with the Fibro diagnosis which I was not happy about. We talked about me going to physical therapy once to get some exercises to help with the range of motion and to help strengthen it. She did not know enough about LDN to rewrite the script for me. I told her about how hard it was for me to get an appointment with the rheumatologist but she did not offer to call over there to make it any easier to get in which I thought was odd since that is what a concierge doctor is supposed to do. I tried to make it clear that I wanted a doctor that would not give up on me like the others have done in the past and she said she wouldn’t. She gave us a packet to take home with all the information about the concerige practice, said she looked forward to being our doctor and to call her with any questions about it. I still left there feeling something was not right, When I got home I looked at the packet and saw that once you signed the contract there were no refunds if things did not work out. That did not sit right with me especially because of how expensive it was. I decided to start making a list of questions and think about it some more before I committed to anything. In the meantime I kept calling the rheumatologists office to get an appointment. I finally got one in October after numerous tries and speaking to someone else that finally allowed me to make the appointment even though the right referral and notes from the last rheumy was not there. I also made an appointment to go to physical therapy like we talked about. It ended up being a free consultation session thankfully. It was going to cost me 80.00 out of pocket because of our lousy insurance that does not cover anything until you meet the deductible. The guy that I met with was supposed to have expertise in Fibro but he told me that fibro is basically a diagnosis they give when they can’t find anything else wrong which I tend to agree with. Unfortunately he was not very helpful though. After evaluating where my pain was he made it worse and I walked out of there in more pain than I came in with. He also never helped me off the table and the exercises he gave me just made things worse. The following week the concierge Dr. called out of the blue to see if I had gotten the appointment. I told her I finally did and how hard it was for me to get it but she did not seem to care much about that. I also told her the referral was still not there. She said she would take care of it. I will still be calling to see if has been done before I go. In the meantime I told her about the physical therapy session and how it made things worse. She then told me that I would need to go about a doz times for it to work which was odd because I made it clear to her when I saw her that I was not doing PT long term basically because I don’t have the money or time for that and it made things worse. I also told her that I was not in agreement with the fibro diagnosis and thought it might be myofascial pain instead especially since my pain is usually 1 sided but she was not really in agreement with that either. She was relying on the rheumy for another opinion. I then told her that I had some questions about the new concierge practice but that I would call here another time about it basically because I had not finished writing down my questions yet but she said we should talk about it then because the next day was her day off. I thought that was odd because she had no problem talking to me about it on her day off before. I tried to remember what I wanted to ask but it was hard because I had nothing written down and I was not expecting to talk to her then. Basically the conversation ended with her pushing me to take antidepressants (Cymbalta) for the pain even after telling her that I do not do well on those kinds of meds and she never brought them up before. Then she coldly told me if I was not going to do those things she suggested that I could "just live with it". What kind of doctor says that? I was so caught off guard by what she said that I basically just ended the conversation saying I didn’t know what I was going to do now. All she said in response was to hang in there. When I got off the phone with her I was devastated and broke down in tears. What I thought was going to be the answer turned out not to be again. As bad as it was at least she showed her true colors before I paid her all that money. I just don’t understand how doctors can treat people like that. After crying for hours I started to think about what I was going to do next. Part of me just wanted to give up but I knew I had to keep searching for something/someone to help me. I tried contacting the 2 other doctors that were going into the concierge practice with her to see if they would be willing to talk to me and maybe be a better fit but they never responded. I have a feeling she told them not to talk to me. After that I started to look for more holistic options like myofacial massage and a search for a direct medicine doctor which is a bit different from concierge medicine. I found out there are only 3 direct medicine practices here in Denver. I was able to speak to each of them on the phone before I made an appointment and am going to meet with the one that was most willing to help me soon. I am really hoping this will be the answer I am looking for. I am not getting my hopes up yet though. All I want is a doctor that will treat me with kindness and compassion and will respect what kinds of mediation/treatments I am comfortable taking/doing and what I am not. I don't want a physician that just prescribes meds. I want someone that can look at the big picture, try to find the cause and think outside the box. Most importantly I need a physician I feel comfortable with and can come up with a plan to try and find things that might help. At this point I am just looking for someone that really wants to take the time to help me figure this out and try to give me a better quality of life with chronic pain. I don't think that is to much to ask but for some reason it is really hard to find. If you have read this far sorry it was so long but I am hoping that by telling my story it will help someone else that is going through something similar and if anyone has any suggestions or ideas for me would love to hear your thoughts too. 
In the meantime things in my Etsy shop have been slow but Emilia and I have been working on adding Halloween items to the shop. This is one of the girls sets.
These are for the boys.
I also got this great photo from a buyer of her son's photo shoot featuring my nautical party decor. Isn't he cute?

 That's all for now I hope the rest of your September is a good one and hopefully I will be back next month with better news to share then.

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