On Love – my critically ill cat, chronic illness, and online community

The day before Thanksgiving before my second pituitary surgery, one of my friends called from work. She had a paper due but had to work. Would I pick it up and take it to school for her so she wouldn’t fail. I said “yes.” It was 45 minutes each way to school and then tolls on top. I asked if the paper was done and she relied that it was. This friend was a newly found friend that was so supportive of my struggles getting diagnosis and treatment for Cushing’s Disease. It was a small thing to do. She worked at a local animal hospital. When I got there, she still was not done with the paper. I went to occupy myself and I saw a beautiful, huge, grey cat cowering in the corner under a desk. I was not a cat person but I wanted to comfort the animal. He was rescued from a county facility. As they were taking him back to euthanize him because the men that worked there didn’t like cats, the only woman there who was off duty just happened to come in and got him. The vet had just finished his checks, neutering, and vaccinations. I asked if I could hold him and how to hold him. I was told that he would tell me. He was so tense when I picked him up but he immediately fell into my arms to be held like a baby, pushed his head in to my shoulder, started a low and deep purr, and then gazed into my eyes. He locked on my eyes and I just stared back. Not knowing what I was doing, I said, “Don’t worry baby, I have you.”

I had moved in with my parents so I could have support with my health and restarting my life. I had to convince them I needed this cat. My mom answered the phone and said that she thought that I needed a cat but I would have to ask my dad. I got his answering machine so I said, ” Dad, I know you are busy. I found a cat that I want. Mom said it is OK with her if it is with you. If I don’t hear back in 5 minutes, I will assume it is OK.” That was so out of character for me but I was hoping humor would help. I got the approvals, turned in the paper, and then got my cat.

I always thought that I was a dog person. This cat was so attentive and focused on me but also annoying. Every chance he would get, he would sniff around my forehead and nose, claw, bite, and scratch while howling at my forehead between my eyes…he knew. The day that I left for surgery, he ran down the hall yowling and raking his claws down the hall wall as he went. It was the only time he was ever bad like that. When I got home, he found his place sleeping with me. Recovery was difficult because I kept being woken up with him on my chest and his tongue up my nose on the side the surgery was done. Purring. He always purred while tending to me and staring in my eyes.

He has always acted as my protector and healer. My most sensitive pet, he always knows. He has helped me with socializing my feral and been buds with all of my other pets…this is not a typical cat. Needless to say, he has a special place in my heart.

He has been looking sick but because he continued to act the same, I thought he was fine. Then one night, I saw the yellow in his skin and he threw up. He went to the vet the next morning. It was going to be $400 just to find out what was wrong but he really needed the emergency vet. As it is, my finances, career, and health are a shambles. None of this was really something I could even grasp. Already in the weeds with just about everything, this was not something I was prepared to even approach. I currently require a lot of money from my parents every month. However, he has been such an important part of my life and I felt badly for not catching it earlier so I said, “yes.” I couldn’t not know if it was something that could be treated. As I have learned, the reason I caught it so late is he perks up and fakes around me.  He was normal in front of me but when I wasn’t there, he couldn’t even hold his head up. His love for me is why he got so sick.

I had posted on Facebook the night before asking for prayers for Wiley and explained a little bit about the situation. I replied back on that post giving an update and that it broke my heart that because of these changes in my life and ruined plans that I would not be able to care for him. I worried that I would be viewed as an irresponsible pet owner. When I got him, I thought that I would definitely be done with school and have a good job…even with planning on doing a PhD. How could I not care for an animal that put me above everything and cared so deeply for me.  This was my only pet that refused treats and barely ate when I left him to go out of town.He is special.

Who I am, I never would have aired any of this. I use to feel like this was normal life that we all just deal with. Finances shouldn’t be discussed publicly. However, with how my health has been and the untreated deficiencies along with learning to manage with adrenal insufficiency, I have been pushed to change. I had to reach out.

About 30 minutes after I left him at the vet, I was back at work with the intention of staying. Very suddenly, I felt nauseated and dizzy. I was so weak that I shuffled along. I had already up dosed but clearly I needed more. At my desk, there was so much noise that I needed to get away. I wanted to go home but I had taken more hydrocortisone several times with only a brief improvement in my adrenal insufficiency symptoms. My headache was awful along with tension throughout my body. I usually don’t get headaches. Headache and the tension could be associated with AI but it could also be the stress of the situation. I was so worried about not being dramatic yet still taking care of myself. I wanted to show that I am strong and capable by working. I needed the money. However, I ultimately decided to go to another floor where it was quiet to sit with a coworker. My AI was not under control and I was worried about my safety. Several of my coworkers immediately stopped working to help and see what they could do. I asked them to just watch my AI symptoms and be there if something happened. They made sure that I had plenty of fluids and got some crackers for taking more hc. Eventually, I felt well enough that I went home. They all offered to drive, check back, and bring food but I was embarrassed and said I was OK. When I got home, I started really drinking more water and ate a lot of salt. It was the help of coworkers and friends online that got me to the point that I felt comfortable alone.

During this time, I had several people comment on my Facebook post that I should start a GoFundMe and they would donate. I said that I would consider it but really didn’t. I know people that have been questioned about the validity of fundraisers. While I understand giving help, asking for help like that I couldn’t understand. It had been suggested before to help defray my medical costs but I couldn’t entertain it. However, for Wiley, my heart changed. I had a long talk with someone. Ultimately, I know how it feels when I learn about someone else’s pain and I want to help. Helping others feels good and it is something that can make change. After a long nap, I got up that night and made a PayPal link.

When I shared the link, I also asked for prayers and also help from someone else that has AI. I was blown away. In hours I almost got the entire amount needed for diagnostics and initial hospitalization. This gave me the buffer I needed to take care of my own health, come to terms with the situation, and make decisions. I am unable to articulate how blessed I am. The people that reached out range from those that I both knew in passing to those I have never met. Those that had the ability to give and those that I know it was hard for them. I cried to feel such love and support. Additionally, I received so many personal stories, advice, and help. I learned from others about how the role of a pet changes with chronic illness and it wasn’t just my experience. I got so much help with dealing with the feelings that I had of failure and guilt. I hate saying those words but they were passing emotions that I had. Before I never would have shared this but I did because I hoped that others would understand. Few people understand putting every last bit of energy into just the basics and having nothing left. Because of my own health and financial situation, I do think that I tried to see the positives in Wiley’s behavior and tell myself that he was OK. The number of people that I spoke with that understand how every effort and intention can be undermined by something like health and how difficult that is helped. I hate to think that others went through this but I found comfort.

In our community, we have had people that have taken advantage of others faking illness and crisis. Knowing of those situations, and being leery of people that are really open about private things like that made this leap very difficult for me. I use to think that I would never ask for help in this way because I wanted my friendships even (or me giving more) and my motives never questioned. Now I know how important support in these ways can be. My online friends have been able to help in ways that family and those I see every day can’t. Having adrenal insufficiency in particular makes having a support network, being open, and asking for help very important. After being burned in the past, I took on a world view that really is incompatible with where I am now. This situation has pushed me to re-evaluate my beliefs and approaches. I am so grateful to others for their support and teaching me other viewpoints.

I believe that this support has helped me get to a place where I am not worrying about my health becoming and issue so I can focus on Wiley as I should. Right now, it is all about him.

This morning at 8:45, the vet called to tell me he was doing much worse and asked how soon I could be there. She said she didn’t know how my health impacted my ability to get there but I needed to be there ASAP. When I got there, he perked up. I asked about the feeding tube that was offered before against the wishes of my family. One was put in and he has tolerated it. He has had 2 feedings and another visit by the vet so I am still hopeful. Being in a better place, I have been able to be there for Wiley and attend to him without being upset. If I am upset, it agitates him. Tomorrow, I should hopefully hear good news or have to make a decision.

My purpose of sharing this is that often in the communities, we have trouble and argue on how situations like this should be handled. Sometimes it throws up suspicion. Sometimes it pushes us to hold back. Being open can lead to loss of support or the support needed. In reality, chronic illness for many of us permeates so many aspects of our lives. Accepting support and help in critical times that could result in a spiral is very important. Especially when dealing with adrenal insufficiency, it helps to have a support network that can be relied upon. I am still working on my plan for how to respond in appropriate thanks and document the help but I am happy that I took that leap.



Escaping the Bully

I have been breathing free for a couple of weeks and the past seems so distant now. I escaped. It really could have gone either way. The department I work in has a long history of firing everyone on both sides of bullying. I was told that I would be fired if I said anything to our mutual boss….so I didn’t say anything to him. Surprisingly I escaped. I use to be good with handling bullies on my own but this one was out of control and had to go to a higher power.

Our mutual boss was gone for a week or so. Things got really bad. At that point, I took thing up. However, I approached things differently than everyone else that goes to HR. I focused on what it meant to them. Everyone else that I know complained about how they could be hurt. Instead, I emphasized how this bully was impacting people and the potential for liability to them. I used very clear examples. It may have been better if I planned going to HR but it really happened in the moment. Under those situations, I am usually crystal clear but I may miss an aspect of the situation. When I went, I tried to keep myself as out of it as possible except for one thing. I was honest about my health and what it was doing to me. I explained about my replacement hormones and how the bully impacted me. Then I said that I am only one person and I know my health issues, I do not know the issues of others. I then mentioned the person that keeps talking about killing herself and the veteran with PTSD that was targeted. I explained how intentionally targeting those individuals made for a dangerous situation and I was concerned. Finally, I said “I do not feel safe.” I kept saying that over and over again after each of my points. I alluded to implications of these things. I told them that I was going to HR because of concerns for safety. I tried to be clear about my expectations without saying anything directly because I didn’t want to threaten them. When I went, I only said the things that HR would care about and kept feelings out of it. I also focused on how I was capable of dealing with various situations in the past but this was different and how.

After going to HR, I was then asked to speak with the next person up the chain. I repeated everything. At this point, I was told that outside consultants would be involved. It was explained that actions may be taken but I would never know about it and that I would hear back. Things settled back into their old ways in less than a week. At this point, I called the employment agency because it was a personal issue. I was asked if I wanted to put in notice and I replied that it was an inappropriate response. I then explained why they should be involved in finding a solution. The employment agency then said that they were not sure of what I wanted because if I complained to my boss, I would be fired. I then responded that I wasn’t complaining to him and whatever he did was beyond me. I am not stupid. It sounds like complaining to the employment agency  and having them contact my boss the same thing as complaining directly but I believed that there was a reason for this and with the right push, I could be freed. That is what happened. As I was told, I took it to HR, his boss, and the employment agency so there was not option but to address the problem. I was then protected from the situation. I am now on an entirely different floor with a slightly different job description. Life is much better.

When the bully supervisor was told that I was not going to be there anymore, she cried. SHE CRIED! Why? She thought that I got a promotion and she hasn’t been able to get a raise in over a year. At first that bothered me. She hated me because I have more education than her. She held me back from getting higher starting pay for having additional job duties than others…I was promised more starting. I got it at 6 months but still! Now that I am away from her, I just don’t care. Since this has happened, I have provided hope for so many people that are still there. I still hear really bad things about what is happening but I have hope for them.

I don’t think that there is an easy way to get out of a similar situation. There are some things that I did that helped me. I documented everything. When I emailed someone, I copied myself on my home email. At first I blind copied myself and then I decided that I wanted that person to know that I was doing it. I kept a notebook at work. Nothing was too small. I also noted who was a witness. I also made sure that a family member knew what was going on and where I kept things. Later when filing official complaints, I let them know that my family had knowledge of my records. One of the biggest things that helped was I did online research of workplace bullying. I tried to be careful about using reliable sources. I needed definitions and to know where the lines are. I also wanted to be sure of how HR thought when it came to these situations…that gave me the specific topics to focus on. I also spend time when I was OK clearly mapping out an argument with examples. This helped me so that when I needed it, I was ready. Finally, finding examples that showed that this was not a “me” thing helped. I cycled between those and saying that I didn’t feel safe.

There were also some things that hurt me. The people that were witnesses were very stuck in being wounded. They still don’t understand how and what to communicate. It isn’t the petty day-to-day examples that matter. Those need to be categorized and clear statements of what could happen needed to be made. I also did not carry my documentation in with me when I made those complaints. That probably would have been more effective.

I have so much education and many wonderful skills. There are things that I could do. However, my health and poor timing put me into the position of doing clerical temp work. I thought that it was only going to be several months but it has now been a year. The bullying situation definitely added on to the time that I have been stuck there. It took so much out of me that I was limited in my ability to look for jobs while also getting my hormonal situation worked out. I definitely believe that my health played a huge role in this situation on so many levels. However, I have learned so much and have worked so hard to improve my health that I doubt that it would have taken so long to be resolved if that happened to me now.

For those of you that are going through this now, I hope that something in what I have shared can help you.

Bullying and Chronic Illness

I have been wanting to address bullying for a while. In the past decade, I have experienced way more of it than the rest of my life combined. Not only have I experienced more bullying, but the bullies are much worse and the stakes are higher.

Every time I start writing on this topic, I stop. Part of the reason is that this is huge. There are so many ways that bullying and chronic illness go together. I am more vulnerable. I am an easier target. Dealing with health problems makes it so I don’t always have the exterior I need to deal with people that are ridiculous and immature. Being bullied can also dramatically impact our health. This is just a start from the side of the individual being bullied.

Chronic illness can also make the bully much worse. I imagine that is the case with the person that has been bullying me for the past year. She is dying of cancer. I have overheard her talking about targeting people dealing with physical and mental illnesses in the attempt to break them. It is how she selects her targets. She enjoys it.  Additionally, her attacks seem to be very much related to her treatment pattern. That is another way that her chronic illness plays a role in bullying. There are so many things to delve into.

Right now, I am going to keep this superficial. In discussions with others from my health groups, it is very clear to me that bullying is very common. Illness can seem to bring about bullying, you are not alone. Please hear me. YOU ARE NOT ALONE.

I am still working through this right now so there are so many things that are on my mind. The next most important thing that I have to share is that when you plan out how to deal with the bullying and ways to get out of the situation, be sure to fully take into account how your chronic illness impacts you. Very likely, when things get bad with the bullying, there will be more to deal with illness-wise. For example, each time that I get something special at work or acknowledgement, my supervisor attacks me more. I have been getting a really bad bit of it recently because I reported her again. Usually when I have extra work to do, I feel like I run behind more with my cortisol replacement. Additionally, I have also been really pushing to get another job and move. This would seem to be appropriate for my situation but it isn’t without adjustment. My body tends to do fairly well with emotional stresses. However, if I have physically pushed my body, been running on the low end replacing with hc, and then have an emotional stress, all of those things combined hit me that much more. Rather than having what feels like a dip in my cortisol, I feel like tank…repeatedly. Knowing this, I have to plan ahead.

I know when I am going to be exercising more or outside in the heat. I also know when I am likely to be the target of bullying. I then have control of the situation if I can plan ahead and not get myself into a situation where my cortisol keeps dropping. If I get into that situation while I am being bullied, it will only make me a bigger target to her. Avoiding really bad situations like that is important.

Again, my illness is where I have control. I have control in what I do. I have control in that I can probably figure out when I am more likely to be attacked than the bully attacking me. Please hear me here. There are places that I have control. These are also the areas that appear to be the most vulnerable. I can plan and prepare how to protect myself even when I cannot even communicate rationally with her.

Another thing to think about if you are being bullied is if you are going to report it. Things are really bad where I work. Sometimes reporting it can have negative consequences. It is possible to have your health outed. It can pull attention to you. Additionally, if you have a particularly bad employer(s), they can threaten to fire you if you complain about being bullied or not feeling safe at work. BTW, that is considered a hostile work environment. Experiencing this has amazed and infuriated me. What I am focusing on is learning how to deal with it.

In general, I do a really good job of keeping this at work. I also am a very strong person. I stand up for myself as well as others. As a child, I learned how to handle bullying and managed very well even in college. What bothers me the most about it now is how the bully manipulates my vulnerability. It would appear that this is where I have the least control, but in reality, I have a lot of control. I know my illness and some things I can prepare in advance.

I am not the only target at work. Most of us are the target at one point or another. I have been, however, one of the main targets. Multiple people heard this supervisor rant and talk about how she hated me and wanted to get my fired even before my first day. These same people have also told me that I have inspired them by how I handle it and how brave I have been dealing with it. The experience is very hard and has hurt me but I take tremendous pride in teaching others and giving them hope. More than anything, I want to share this and my vulnerability for others because I have heard stories. I believe that exposing and discussing this is the first step to dealing with it. I believe that sharing my experience, thoughts, and feeling will help others work through their experiences. I believe that we collectively have strength and wisdom that can help each other.


Safety Plan

My local endocrinologist wanted me to get a medical bracelet, solucortef, and training. I went back this past Friday and was asked about my plan. Part of the problem is that I live alone. My dogs, cats, and fish can not help me if anything happens. While I check in with family daily for this reason and have friends of the family that have helped, this is not enough. One of the things discussed was making sure that people I have contact with every day know who to contact if I don’t show up for something. Additionally, I was asked to have a neighbor trained in solucortef injection. I thought that the biggest problem I would have would be a problem with needles, BOY WAS I WRONG.

My downstairs neighbor has been wonderful. She has driven me, while very pregnant, to a doctor when I was too sick. We have a very good relationship even outside of things that I have asked for help with related to health. When I asked her, she said that she was not good around needles. I was going to ask if I could explain the rest to her but she got back with me and said “yes” but to also get someone else. It took a couple days but I finally got to ask my other neighbor. I was really hesitant because she will talk at me for hours and then act like I was bothering her. She is very judgmental and demanding. She looked horrified and told me not to say another word because she didn’t want to be responsible for anything. She then said that I needed to move back to Virginia across from my mom so that she could take care of me. I started to try to discuss it but she was off to the races. I then said, “In the extremely small chance that anything would happen to me and I would need to rely on you, you would rather have me die?! Don’t even bother.” I walked away with her still yapping. While I know that it is a big thing to ask and it is OK to decline, this really set me off. It wasn’t just why or how she declined but everything else that she said. This is the same person that I have listened to for hours listening to her ramble about nothing or repeating the same story. This is the same person that I have given pet and gardening supplies to. I just can’t even relate to her response because I would never do that. I have stepped up when people have needed help. I have pushed myself even when I felt uncomfortable…and for her, a potential lawsuit is more important than my life!

This is a very different situation but when I was in college, someone knocked on my door when I was asleep. She was in tears and had a plunger  extended to me while begging me to get a contact out of her eye. She had fallen asleep and lost her contact. I had a lot to do the next day and was exhausted but I got up and put my contacts in. No, I did not feel comfortable or know what to do. I had no idea why she asked me. Her response was, “I feel safe with you.” Again I was baffled because we didn’t talk much. I worked hard to calm her and assure her that the contact would come out. Eventually a small corner was visible and she asked me to try to get it. As I did, she started crying. I noticed that the lens moved. I then told her that crying was a brilliant thing to do. She cried and it floated back into place.

Another time I was doing a ride for diabetes. I was struggling that day but trying really hard to keep up with my friends. I ended up passing someone that was struggling with both tires entirely flat. She had a shirt identifying her as a diabetic. Rather than letting her know that her tires were flat and continuing. My friend and I stopped because she was not OK. We did the whole ride at her pace and kept checking in with her because she was having bad blood sugar problems and almost had to quit. There were times that we had to completely stop while she checked her blood sugar and managed it.

Trust me. I get that what I was asking was different but I just really can’t get over it. It is several hours later and I really have no desire to ever interact with this woman again. To me, she is dead to me. I can not imagine putting myself above another person like that. When I let my Red Cross Certification slip, it kept nagging at me that I needed to update it. I am a different person. If there were something another needed from me and I didn’t feel comfortable, I would push myself until I was OK with it.

One of the things that I have been changing with myself is I have been trying to stop myself from seeing everything from other people’s perspective. I need to focus more on my needs. Right now, I have no plans for acknowledging this neighbor. I really want to hear from others this time. Please comment!

Taking to Giving

Chronic illness takes so much. I really don’t want to start of a laundry list of things it impacts and why. Many of us that are touched are impacted financially as well. That is one of the most difficult things for me to navigate. I use to take so much pride in how I managed my finances. Now, I am well-versed in accepting help. I know that I have desperately needed it and I have been responsible. I also know that things would have been better if I asked for help before I did. I have no way of giving back everything that I have been given and that really bothers me. Part of my identity has always been of someone that contributes more than I take. Right now I struggle with not being able to do that.

I am in a really rough transition right now that includes building back what I have lost from many untreated deficiencies. While it is difficult, it is also very exciting. Without assistance, I would not have been able to work back to where I am now. I would not be able to get my medication. There would have been a horrible spiral from so many unmet needs. Obviously I feel badly about this and I feel like I loose a little bit of myself each time I get help…EXCEPT for one thing.

I don’t like to talk about this because most people don’t get it and can’t even understand it. Just by saying it, I am often repeatedly invalidated so I usually save this precious pearl for myself.

All the way through waiting for my Cushing’s diagnosis/treatment and the many years after that with untreated deficiencies, I have consistently felt that I would be able to give back in a truly unique way. I had no doubt that everything would be OK and was quite shocked each time things got worse. There is a part of me that has always felt that everything will be fine in spite of everything else that has gone on. I know what my life is now but I also know what I am capable of. I have tremendous belief in my own abilities, one of them being the ability to rebuild and redefine. I have gone from absolutely nothing to extremely good in a competitive environment more than once. I know that I have to invest in myself even when it doesn’t make sense because there is something on the other side. Nurturing in the bad is what allows growth when things improve. I have a vision of a place years out when I can make things right. It isn’t sudden and miraculous but rather something that has very difficult paths that I can see. The details are not clear but the overall picture is obvious. Some of this will include making a change for others that have gone through what I have been through. Some of this is being that support for someone else. It is hard to explain but I just have no doubts.

When I accept help, it puts me in that very vulnerable place of now. It is so humbling. One of the ways that I have had to get help recently has been with my insurance premiums. On one hand, it reliefs a huge stressor but on the other, I feel indebted. I first started getting help when I was still struggling to feel better. I did what I needed to do and it really didn’t hit me too hard. As things have improved, I have started to be more aware of the world around me. When I went into the facility to turn in my bill, I noticed a group of pictures on the wall of contributing churches.Immediately I knew what I had to do. I use to play music in churches. With training as a classical musician, I use to be paid to do that. I have been building back up but I am still quite skilled and good. I took down the names of the churches and headed off. Over the next couple days, I went to the churches to offer my services for a couple of Sundays free of charge. It was so uncomfortable but it helped me feel better about what I have to do. I have heard back from one of the churches and hope to play there soon. They were very grateful. Sometimes we aren’t able to give back exactly what we get but the gifts that we do have to give are worth more.

Try to keep away from the mental tally of what is owed. That is actually fairly easy to do. Focus on getting where you need and when the time is right, you will just know what to do. The interesting thing about this leap for me is that at the same time I went to the churches, I got very positive feedback about a job application. I am waiting to hear back on the outcome . Either way, each of these steps are contributing to helping me realize my vision. Everyone reading this has gifts that are worth more than you estimate. Forget that you need help now, everyone needs something from time to time As things improve, you will see your part in the puzzle.

Finding the team

Finding good doctors is so frustrating. The one that is good for one person, may not be good for another person. I have also found that sometimes a friend will rave about their doctor and then I find out later that they had serious problems that their doctor was ignoring. I have also found that some of my best doctors were “the worst doctor” someone else has ever seen. There have been times that I have asked for a referral from a doctor only to find that it was not a good choice at all. There are so many things that come into play here.

One of the things that I have found to be the best approach for me is when I look at what my needs are and then try to figure out which doctor has the best approach for that problem. This requires a lot of work, asking around, and reflection. What do I mean? Even with specialists, there are different approaches and vary in how they handle the difficult ones.

Let’s start with my approach to getting a second opinion on what turned out to be endocrine deficiencies. I had been going to one expert for close to a decade with the same issues. I tried every way I could to communicate what was going on. Because of this, I assumed that it was probably not as much a testing issue as it likely was an interpretation issue. I thought it could also be a testing issue but I was somewhere in the grey or maybe it wasn’t the right test. Knowing that I barely had any pituitary left and that I was expected to recur with Cushing’s, I started here. I decided that I really wanted an endocrinologist that had a lot of patients with these issues that were not straight forward. The next most important thing for me was quality of life. I realized that even if I got treatment, the outcome could vary a lot. Those were the most important issues and I kept to that. When I made my decision on who to go to, I originally would have overlooked them because I was very traditional what I expected in terms of appointments and office. In reality, this was not an issue at all and actually a positive.

Sometime doctors really need to be selected because they are a team player. With having complicated issues, I feel much more comfortable when I have more than one doctor looking over things. Where I lived before, I had a local endocrinologist and an expert. They worked together and had somewhat different roles. This was good for a while. However, sometimes sometimes things don’t work out. The local endocrinologist went on maternity leave right before I had my second surgery. When I came back, she acted a little odd and said that I didn’t need her with my specialist so close. I know other people that have been lucky enough to have their local suggest that they get a second opinion when they think that the specialist may be missing something. Sometimes I wonder if things would have been different for me if I continued to go to my local endocrinologist.

With having so many appointments with doctors, sometimes I just need a doctor that isn’t a jerk. I use to have horrible experiences with gynecologists until I moved to where I live now. When I moved here, I spent a long time online trying to find one. I read so many biographies, reviews, and online things that most blurred together except for one. There was one doctor that clearly explained his role and approach as a physician. I scheduled with that one. I made the right decision.

When it comes to primary care, I want a doctor that is willing to test, advocate for me, and refer. Also I have the tendency to be quite nervous in appointments so being able to appropriately handle that is important. For this role, it is often best to go to the local community and ask around. Find people that have had to struggle to find out what is wrong with them and had a great doctor that helped them get to where they need to be.

One of the more difficult things recently was when I got the second opinion and also picked an endocrinologist here. I decided to fly across the country and get started with diagnosis and treatment before I had my appointment with a local endocrinologist. Because I wasn’t functioning, I didn’t have any options. I was concerned about problems because I picked both endocrinologists rather than going to the local one and then getting a referral. Then I realized that this really shouldn’t be a problem. If it was an issue, I could easily rectify it by finding a new local. This ended up being more of an unusual situation because they haven’t worked together before. I really respect my local endocrinologist because he has continued to try to navigate this when there isn’t a clear role for him. He has also caught somethings that needs to be addressed. In my opinion, this is what I need. Because there are so many things that have to be addressed and I have so many hormone replacements that are being treated, having a second pair of eyes looking over everything is good. He has also provided some additional information and insight. Win!

A final consideration is making sure that expectations are appropriate. Each doctor has a different role. Sometimes things will change and a doctor that was once great may not be able to help. If needs change, sometimes a new set of eyes are important. This doesn’t make the doctor that missed it “bad.” Another point is that there will be variations in appointments. Sometimes things will not be smooth. It is a personal issue as to when to stay and when to move on. A lot of this can be answered in terms of their role and if the problem seems to be the way they are or more situational. While I believe it is important to try to work things out, it is also important to not waste valuable time with poor health.


It is more than amount

I have been taking hydrocortisone for almost a year now and I have to do a 24 hour urine free cortisol. This is old hat *boom boom chick* for me. I went to the lab yesterday to pick up the jugs. Yes, you heard right – JUGS. Plural. I did these all of the time when I was testing for Cushing’s and after. I usually try to restrict how much I drink but I am really uncomfortable on tests that I get it all in 1 jug. I really need 2 and could easily have done 3 before. The technician was shocked when I asked for multiple jugs and told me that I could just bring it in something else because she really only needs to know the volume and can take the aliquot out of the one jug with acid in it.



*thoughts about the other times that I did it without preservative and I was told to just bring it in something*


*thoughts of the times that I wondered why they would do that because there had to be contamination no matter how much I cleaned it out*




*thoughts about how many of my tests have likely been messed up because I am a 2 jug girl*



I took a deep breath and focused on discussing the issue. First I mentioned that cortisol has a diurnal rhythm and that one jug would likely be from the AM while the other PM. She just stared at me. I then said that the point of the test was to determine how much is produced in a 24 hour period. Because they are taking aliquots, the volume is used to determine that so if she picked only one jug to take the samples from, the estimate would either be high or low. I then explained how hard I have worked to get appropriate treatment and how either an inappropriately high or low number could impact me.

At this point, her face really looked like she was realizing that she had really messed up a lot but I know she had read the protocol so I wondered if maybe I was not clear. It was the end of the day on Friday. Usually between 1-2 PM, I just want to go to sleep and I am not very clear mentally. It was 4PM and I was exhausted so I nicely asked if I made sense because I was really tired. She said yes and said to be sure that I speak with her on Monday when I drop it off so she can be sure that it was processed appropriately. She also explained that they really don’t have a way to combine and mix them so the original way she described the process to me is how they handle them.

This brings me to my entire point of writing today. If you are going through testing, it really helps if you understand how the test is done and why. I have heard so many times about tests being performed incorrectly. We need to be really careful. There are so many tests that I can think back to and really question if it was done the way it should have been done. Feel comfortable verifying that the labs will be processed as requested. If the individual collecting the labs has an attitude, go to another collection site. The person I spoke with on Friday was extremely nice and helpful so I have faith that things will be fine. Taking time to learn the basics regarding testing and processing may be intimidating if you don’t have the background but it is so important. You need to make sure that your labs are done the right way to both get the proper diagnosis and treatment. It is hard enough to navigate your way to the right doctors, don’t let the lab be a stumbling block.



In music, there are many kinds of rest. There are small rests and larger rests. Some of the larger rests allow the idea to be further developed or other voices to be heard. For this reason, I don’t want to approach another large topic like yesterday. I want to wait until it feels right. Over the past 24 hours, I have been working on the next one and I was really excited about the topic. It was even really appropriate for what happened to me. I have yet to see this topic addressed but it doesn’t feel right yet. I am going to allow development of the previous idea and transformation. Soon…soon.

As patients with chronic illness, sometimes we find that rest is important for other reasons. Sometimes we take it so that we can just do something else. There are those things that we have in our bag that are less impacted by health than others. Those serve as a wonderful diversion and reprieve from normal challenges. We can also rest because of that limit. There is nothing else that our body can handle. Another common type of rest is after overdoing it and I am one that likes to push that limit. There is something so enjoyable in pushing yourself for the challenge and that rest is so encompassing. However, finding a middle ground is important, more sustainable, and better for you.

Observe. Simmer. Think. Build your resources.

Sometimes it isn’t you but them…really.

This is one that has always been very hard for me. I have seen and identified the issue multiple times but it is hard for me to really get it. In my mind, the professional should be able to know when they are off. They should be able to identify when they have the wrong perspective. I have been able to do that in my work life, they should too. The thing is that this doesn’t happen and we are really likely to be the ones hurt. We are even more vulnerable as rare illness patients. This can cause lasting damage from misdiagnoses and such. I really believe that this is an underestimated problem. I can think of more than 5 times that this has happened to me…I know it has happened rather than assumed.

In our groups, we often hear people rant that the doctor is an idiot and things like that. Maybe this accounts for more of that. I know that there are other issues that account for poor treatment and misdiagnosis but I really think that it is possible to reduce exposure to some of that. Expanding this concept to a person having a bad day or it being the wrong time of day for them to handle the issue, I definitely think it is more widespread. At this level, I can think of times that I am culpable but with much less of an impact. When you add the other challenges we face, it is of tremendous benefit for us to be able to identify situations that I am speaking of and either avoid the situation or the provider. I was foolish for many years thinking that they would get it because they were capable and had credentials. That is not a good way of thinking. To make things a little easier, I am going to set the stage with a non-medical example.

When I went to college, I decided to be a music performance major for a quite difficult instrument. This instrument requires years of training yet I only had one year. I ended up getting into a university with a conservatory setup that was ranked number 4 in the country at the time. The instructor for my instrument was highly sought as an instructor. Time after time, I heard so many wonderful things about my teacher. If you are going to be a musician, it is the teacher that is the most important thing to look for. I was overjoyed but also scared. How did I do it? How did I get a scholarship? Would I get there and then be humiliated because I wasn’t good and they made the wrong choice? Would I be able to make it? Overall, I was positive with expected doubts given the situation. Making the right impression was important. This person would have a lot of influence over my professional life.

When I got there, I was blown away but worked very hard. However, I was concerned that my biggest fears were real. My instructor played solitare on the computer or smoked for most of my lesson. My hour lessons were only 10-15 minutes! How would I ever catch up? Secretly I thought that my lessons were so short and he passed me on everything because he realized that he made a mistake bringing me there and had lost interest. I began to work harder. I lost my social life to focus on oboe because I wanted to make him interested again. I knew it couldn’t be him. I spoke with his students the year before and they had amazing things to say. It had to be me.

Slowly I got clues. I saw the reaction of the grad student that had her lesson before me. She was an amazingly talented foreign student but she beat herself up horrible because of having bad lessons. I noticed it elsewhere. One of the graduate students yelled at him. I then noticed it elsewhere…his references to suicide, his obsession with pornography and shocking us, his general lack of interest in anything until that one day in the semester that he was awesome. It wasn’t until I got multiple senior students off campus for coffee that I learned that it wasn’t me. In fact, some of us it was a mutual revelation. The grad student that had her lesson before me broke into tears ending in sobbing. Many of us thought that we were the problem. I communicated with him and he lashed out at me. Ultimately, after 2 years, I took a year off to transfer. Things broke down in the studio that year off and he actually reached out to me to thank me for how I handled it and said that it helped him identify what he was doing. A couple of years later, he went on medical leave after an attempted suicide.

After this, I repeatedly told myself that just because someone is an expert doesn’t mean that they are always right. I was trying to convince myself of this because somehow I didn’t really get it. This was actually early preparation for what I experienced in medical situations. I still struggle but I am better. Not responding appropriately to these situations and trusting the authority has cost me dearly…years of my life and multiple misdiagnoses. I don’t think that we realized just how much these issues impact us so I am going to discuss it in detail. Let’s discuss a situation that is more medical.

Early in trying to get a diagnosis and treatment for what ended up being Cushing’s Disease, I was sent to another specialist. I had one question but my endo had another. I tried to explain things and she just did not get it. I would say one thing and she would reply back from left field. She ended up diagnosing me for something that in no way I thought I had BUT I kept going because of expectations from my endo. I was compliant even though it felt wrong. There were times that I saw this doctor and it was clear she had just been crying. She stared out the window and spoke slowly and quietly. At this time, I had started to become freaked out that doctors were ruining my life. I thought that they were competent but wondered if they just hated me. There was something that made them completely miss the boat just on me. (Do you see the similarities? I know I am not alone.) I started volunteering at the local hospital hoping to see something different that would change my perspective….see how I could change myself to get what I needed. I was sure that if I worded things differently, it would all fall into place. That is not what happened.

One day when I was volunteering in the Emergency Department, a physician was called in for a consult. There was an exchange when he passed by and then a nurse rolled her eyes. She whispered to the group near me to meet her in a place…she had something to share. I didn’t want to know. From the body language, I was planning on being elsewhere. Unfortunately, I had to be in that area and overheard part of the conversation. So the doctor that I was concerned about, it was her husband. They discussed how badly they felt for her because they had been married x years and he was having affairs and shoving them in her face. They talked about how it had to be impacting her both personally and professionally.

This was a blessing for me. I still had trouble believing the situation but at an appropriate time and when I had enough solid things against how she was treating me, I quit going to her. It was when I had surgery that I made my last appointment. Her response was, “but that is brain surgery.” I replied back perfectly. Part of the reason I continued to that point was for that resolution. I was so sure of this.

I went into a lot of detail for both a non-medical and medical example of how this can impact our lives. It is hard to identify but so important. Sometimes the issue is small and things improve for the next appointment. Sometimes there are other patterns. I had one healthcare provider that really missed the boat over all but was functional first thing in the morning but really off by noon. It is important to pay attention to these things. If you notice a pattern with a healthcare provider that you like, schedule your appointments at times that they are “on.” Pay attention so you can catch these things. Remember, sometimes it is them and plan accordingly.

It takes two

So often I focus on what I need to do for the big appointment. After documenting and trying everything I can think of that I can do, I carefully prepare myself to have a great appointment. I have put a shocking amount of time into contemplating the pros and cons of dressing and grooming as I do or to look how I feel. Those of us with chronic illness (in particular those with rare illnesses) are well aware of the pros and cons…especially women. I have also spend time carefully wording what I am going to say to make sure that I don’t say anything that will be misunderstood. That has failed plenty. When I first started getting sick, the doctors that I went to decided to “play with me.” They even said so. Any word I said was twisted endlessly. This had a horrible impact on me and left me with another dilemma. I didn’t know if I should continue with the same doctor or find another. If I went to another, I would end up looking like I was doctor shopping at this point or I had the option to go back and pay to be abused. Ultimately I decided to go back because at least she was testing and I have a thick skin. The problem is that it broke down my trust. I use to put many people on a pedestal. The thing is that we are all very human. This is going to be my topic tomorrow so I am going to stick on course right now. If we are the ones that are sick and we put so much energy into trying to get better only to be put down, used as a platform for the medical professional to feel better about themselves, and trampled on, how do we have our needs met and live our life?

The first thing I did was I realized that these medical professionals were working against tremendous constraints. I noticed that a number of them had some serious issues to act the way they did…It wasn’t me (tomorrow). This can take a lot of the pressure off. Just because you try one thing and are not heard doesn’t mean that approach is wrong. It doesn’t invalidate your experience or illness.

The next thing I did was I found a dream for afterwards and I worked towards this goal. There were multiple things that I added to my life but one of them was scuba diving. That was a deliciously extravagant gift but I did that for myself. It meant that I had to plan and save extra. Pulling out $5 here and there towards that was nothing and it really helped me create a personal oasis. When things got really bad I was able to daydream about my big trip.

Another thing that I did was I fought back. Fighting back for me included taking up jogging. I did 2 half marathons. I realize now that I probably shouldn’t have been running and what I pushed myself through were clear signals that it was dangerous to continue BUT I was able to have control over something. If I ran 6 miles, I would feel less jittery for 20-30 minutes. I fought back.

The final thing that I did that I am going to share is that I learned to let go. When something happened as a result of my illness, I felt it right then regardless of how appropriate it was and then moved on. Life is hard when you are sick and so much can happen that I found that this allowed me a certain type of freedom.

While trying to get appropriate treatment is important, I find not letting it take over my life in spite of all the constraints it puts on my life to be my job. That is how I get out of the dance. It is the doctor’s job to treat. They should be professional. That is on them. Try not to take it with you.