Today I want to make an announcement- I have given up my narcotics habit. Let me explain. For the past six months I have allowed my physicians to keep piling on the prescriptions to help with my hormone problems, sugar regulations, insomnia and other problems. It kind of happened without me realizing, one prescription here, another there, until as of yesterday I was taking around 10 pills a day and an injection.
For little spurts I felt improvement from the various treatments but never the large-scale change which was promised. I seem to have a weak stomach which is upset rather easily (even the anesthesia from the eye surgery made me sick). As I reported in one of my posts a medicine called victoza made me particularly sick a couple of weeks ago. I literally couldn’t eat for days and was vomiting non-stop. It was awful.
With a optimisitic attitude I tried it again and felt good for a couple of weeks but when I stopped taking all my meds for my eye surgery ,and then started them all again, the negative symptoms returned. From last Thursday to Sunday I could not keep any food down and had terrible nausea, vomiting and other GI problems. I almost went to the hospital Sunday because I had not eaten in 4 days. In the end, I went to Instacare and got some anti-nausea meds and an antibiotic for a UTI.
I am sure all of that is an over-share but I wanted to explain how I came to my realization. On Sunday I had a moment of clarity that said ‘nothing is worth feeling like this. Nothing’. At that moment I decided that if it takes me 5 years of grueling diet and exercise as opposed to the more rapid help from the drugs that’s what I will have to do. I will have to regulate my sugars and hormones the old-fashioned way.
Armed with this decision, I met with my doctor, and he was very supportive. We decided to stop the victoza and metformin along with several other meds. This reduces my meds to about 3 1/2 pills a day. Pretty good, right? The doctor is changing me to a different blood sugar med called onglyza that I only have to take 1/2 a pill a day and is better than either the victoza or metformin on the stomach. I have bcp, lunesta for sleeping and one for my hormones called finasteride.
We may add or take away items as we go, but I feel good about this change. I am not saying it is the right change for everyone, just for me. I have felt very connected to the spirit during this whole process (finding my doctors, getting through treatment, trusting the diagnosis etc) and I think this is what it is telling me to do, for my body, at this moment.
The most important thing I have learned from the last 6-12 months is to take ownership of my body. Only I know how I feel, and as brilliant as my doctors are they can only guide ME to make the decisions which affect ME. My advice is to be open to try new things and treatments but in the end be brave enough to say ‘enough is enough. I’m moving on.’
Thank you to all my friends and family for supporting me (and listening to me whine) while trying to figure all of this out. Some day I hope to make it up to you but until then consider yourself forcibly electronically HUGGED. I love you all so much!
Wednesday- went into hospital at 9:45 and filled out forms and got registered. Once they called my name I went to the pre-op room. In this small room they go over the procedures and ask me a million questions, which will then be asked again and again throughout the day (my name, birthdate, what surgery I’m having, when was the last time I ate, etc). Next I had to get on my robe and other garments and get seated on the bed. Finally the nurses came in to try and ‘thread the IV’. Unfortunately I have very small veins and even drawing blood regularly takes a skilled phlebotomist several tries. Two different nurses tried on 5 pricks to no avail. (I took a photo of me with my hands all bandaged but it didn’t turn out.).
With no IV in they wheeled me into the operating room. Then I met the anesthesiologist who was a cheerful fellow who asked me more questions in a jolly way. Eventually he was able to thread the vein using a pediatric needle (I really do have small veins!). Then came the sleep…
Waking up from anesthesia is a weird experience. Its a foggy wake up where nothing makes sense. I immediately felt hot, sweaty and nauseated. In fact, within a minute I yelled for the nurse and threw up this thick gooey substance and it was all over me. (sorry for the overshare). She came and gave me a bag and tried to calm me down. At this point I wasnt even thinking about my eye. The nurse was able to change my robe and get me a hot cloth that helped sooth me and it was only then that I thought “ooh, my eye hurts!”. It hurts in a weird way. It kind of feels like a pressure mixed with a sting. Have you ever had a eye lash stuck in your eye? It feels a little like that but with all your eye lids.
After I was partly calm they moved me from post op to recovery where I could see my mom. What a welcome sight and to feel her hand on my hand. It was funny because she was so cold in the room that they gave her like 3 blankets. Me, on the other hand, was roasting- sweat sticking to the bed. The nurse tried to get me to drink cranberry juice and sprite but it was too sweet. I wish they had something better for diabetics besides sweet sodas. Finally I went with a diet pop but it didn’t help much. I tried to eat 2 crackers but did not feel well. After resting for many minutes (and receiving medicine through the iv) I was finally ready to put on my clothes which felt heavy against my sweaty, weary body. They rolled me out in a wheel chair and then I got into the car where I immediately got sick again and threw up.
Feeling awful we drove to the doctor’s office for the final adjustment to be done. I was nervous about this but with the anesthesia gel it wasn’t too bad. I told my doctor that getting my eye brow’s waxed hurts worse! He is such a good doctor and just a kind man. I am lucky to have found him. The nurse who helped us at the doctor’s had the same surgery but she told me she needed it 6 times throughout her life! I guess she was born with crossed eyes and it took many tries to get alignment. Wow! I can’t imagine going through this 6 times. She did also say that my doctor was the one who could finally get the alignment right. It seems like he is the best at this particular surgery and it is comforting to know you are in the hands of the best.
Finally after all that I could go home, take some lortab and rest. Surprisingly looking at a laptop up close was easier than a far-away tv. This is why I was able to post on facebook the day of the surgery. It was especially easy because I used a patch for the first day which helped me to focus and helped the eye to heal. Now things are fuzzier that I have to use both eyes.
My visiting teacher Brianna brought over Rumbi grill on Wednesday which I am so grateful for. Since we didn’t get home until after 4 it was so wonderful to have food brought to us. Thank you so much. She even made sure my mom had gluten-free sauce and that we all had brown rice.
Thursday- After a night of interrupted but good sleep I woke up feeling groggy and a little hung over from the anesthesia. I also felt tons of body aches after surgery. My neck, back and chest were all very sore. I felt like I had been in a car accident and was experiencing whiplash. My mom thinks it may be something to do with the position they put me in for operating. Who knows?
The whole rest of the day I wore the patch to help me see and to help me from poking at the eye. We decided my pirate name is One Eyed McGee. The eye hurt but there were also accompanying head aches that would take over my whole head. Thank goodness for Lortab! I just have 12 pills to get me through the worst of it because I know how dangerous it can be. On Thursday I was grateful for it. It was so nice having my mother here to talk with and help me take the medicine. The eye drops are very important and I have to remember to take them 4 times a day.
Friday- Most of the grogginess is gone and doctor says I have to take off the patch for the day. This makes things double and can be painful- particularly when my eye tries to move. It is more like a pressure accompanied by a bit of a sting. Still, there is definite improvement today. We decide to visit my grandma (I figured sitting there not that different from sitting in my apartment). That was a pleasant visit but I did get tired towards the end. I think it will take a couple of days to be back to my usual effervescent self!
Not wearing the patch is hard. I feel there is liquid coming and want to dab my eye or pick at it. It takes all of my strength to leave it alone. I don’t want infection to develop. I must admit that despite my best efforts the skin under my eye is a little raw from the gauze rubbing against it. today I must do better on that. It’s just very tempting but I really dont’ want an infection.
Saturday- Today I feel pretty good. I woke up with my eye caked over in fluid and the like, which I have read is common. I do feel the sting and the throbbing are a little better. I feel confident I should be able to drive tomorrow to take my mom to the airport. Today we are going to try going out with friends for lunch and maybe going to Ikea. We will see. Now I look like a one-eyed vampire. The strangest thing is I cannot open my right eye completely because of the sutures- so one eye looks big and the other freakishly small. Oh well! All part of the healing process.
Today I am transitioning off of lortab to Tylenol and ibuprofen. I know how dangerous lortab can be and do not want to become an addict. Still, it was nice to have for a few days to relieve pain.
I am confident of my healing moving forward. Thank you for all the support and encouragement I have received. Its been quite the journey but soon I will be able to see differently than ever before. I will be curious to hear your feedback about my eye contact and other things you see as improvements post surgery. My friend Melissa said she could already see a new alignment and that she thought I looked prettier! That made my day. Nothing like being told your pretty when you look like a one-eyed vampire! I really am curious to know if you see anything different in my face and how I interact with you. My eye contact should at least be better.
If any of you are going through surgery- particularly this surgery- know it will be rough but you will get through it. Lean on the support of those you loved and don’t be afraid to ask for help. I am so grateful to those who have helped me especially my Mom.
To healing and getting stronger each day! Please keep the prayers and thoughts coming. Love, Rachel
Today I received a reminder of a lesson I have learned many times- to always know my body and demand the treatment it deserves.
Obviously I have never been to medical school; however, my hunch is the training most doctors receive is to help them treat the widest swath of patients they might come into contact with. In other words, they learn what symptoms to expect and what treatments to give for the majority of people.
Unfortunately my body does not behave like the majority. If there is something weird, unusual or bizarre you can bet I will wind up with it. I can’t just have a normal condition it is always some strange variation.
Case in point- my recent chest pain. For over a month my chest has been achy and sore. I haven’t felt great but not obviously sick (no cough or fever ect). Obviously I knew something was wrong but I went to my endocrinologist and he said it was costocondritis which is a fancy way for saying a virus in the chest muscles. He said ‘take ib profin and it should go away in two weeks. A month later the pain is still there making breathing, exercising, sneezing, and most other things difficult.
Finally on Monday I had a meltdown (as I am sure some of you could tell from my last post) and went to my regular doctor to see if he could do anything. He felt the painful area, examined me and then said, ‘Well, I’m stumped’. I must admit I was very frustrated and upset (and even had an ill advised calorie binge- one slip up in 3 months- oh well! )
In desperation I turned to the internet and looked up ‘chest pain’ and found an article on web MD about how kidney problems can cause chest pain. This alarmed me because some of the medicine I take can give a side effect of kidney problems. I immediately called my doctor and told him I would like to test for kidney problems. He said it was ‘a long shot’ but if I wanted it done, he would do it.
On Tuesday I went in and got the blood work done and today I got the results. Fortunately my kidney looks fine although my serem creatinine is a bit low, which I am looking into.
However, the interesting result is that my white blood count was high and that means- da du da- I have an infection. This diagnosis makes me a little crazy because I asked my endocrinologist at least three times if I should have an antibiotic and he refused. I know over-prescription of antibiotics is a problem but clearly in this case I could have saved a lot of pain for over a month if my doctor had listened to me, done this test earlier, and gotten me on an antibiotic much sooner. Not too mention I’ve had an infection growing inside my chest for over a month- that can’t be good! I’m just glad I will start on them today so the pain will be lessened and I can get back to my regular routine.
Anyway, it was a reminder to me that nobody knows my body better than me. I need to be confident in my symptoms and demand the tests/treatments I feel I need- even if the doctor thinks it is a ‘long shot’. It also reminds me that I am the one responsible for my health and even with all their education, doctors today will not be enough for my freakish body to get healthy.
I have also re-learned to ignore what a doctor may describe as ‘normal’. What matters to me is how I feel. For instance, I don’t care if 79-90 is considered a normal blood sugar reading. I know when I have such a low number I feel terrible. I also never get fevers (even when I had my appendix out didn’t get above 100), and yet I know I have had fevers because I feel the fever even if the thermometer shows a ‘normal’ reading.
All that matters is how I feel and so I will continue to be a stubborn patient insisting upon ‘long shot’ tests and treatments. The doctor’s should just be glad I don’t have kids because I can tell you I will be much more stubborn when it comes to their health! You can count on that!
Anyone who is my facebook friend knows about the crazy experience I had last week. On Monday I went to Provo for an appointment with an endocrinologist. My regular doctor had recommended I see her because of my history of hormonal problems. I don’t want to over-share but I have the following unusual symptoms:
1. Gained at least 50 lbs the year I went through puberty (the photos are striking from year to year)
2. Have been over 200 since I was 12.
3. I was an active child/teenager and yet the weight never went. I was on the swim team in high school and a life guard but never went below 200.
4. Have been diagnosed with endometriosis when I was 17 which can effect hormone levels.
5. Have other signs I won’t go into and recently had a bunch of blood work done and it showed some imbalances.
Given these conditions I thought perhaps hormone levels could be a piece in the weight loss puzzle. I was not looking for an easy answer or something to blame. I know my habits are the majority of the problem but that doesn’t mean there aren’t other contributing factors.
With this positive attitude I went to the doctor expecting to be listened to and treated with respect. Boy was I wrong. The minute I got in with the doctor everything was rushed. Even when they weighed me they rushed through it and didn’t wait for the scale to settle. (it was one of those old scales where you move the weights over). She said I was 287 but I know I am less then that!
Once I was seated she proceeded to ask me all kinds of questions that got progressively more strange. Without taking a second to LISTEN to the points I have listed above she asked me about my upbringing, what kinds of food my mother made for me, how social I was as a child, how active I was growing up. Then she gave me a huge lecture on the epidemic of childhood obesity and told me my mother must have fed me bad foods and that I was an unhappy child, leading me to binge eat. I tried to tell her this wasn’t true and that in general I was a very happy child and that my mother fed us good food. We hardly ever went to fast food and most meals were made from scratch. I also asked “if it is all my mother’s fault then why are my siblings twigs?”. This received no response but more lecturing.
Then we got on to my adult life. I told her I had lost 31 lbs and you know what she said- “I’d have to see a picture of you before?” Can you believe that? I was shocked that she didn’t believe me! Next she asked about my current social life- “Do your friends eat a lot of junk food? Are they all overweight?” I told her my friends are supportive and amazing, which produced a scoff of disbelief. “Do you eat junk food, fast food? I bet your candy eater? Are you a soda drinker?” “NOOO” I responded as adamantly as I could. I even told her about my no fast food pledge, but she clearly thought I was just telling her what she wanted to hear. Then she asked me about all of the diets I’d tried. I told her weight watchers, american heart association, slim fast etc. Her response was
“Weight watchers is the best.How long did you try it?”
“Around 6 months. I didn’t really like it” I replied
“Oh that ‘s not long enough. It has to be at least a year. You should do it again.” she said
Merits of weight watchers aside, I couldn’t believe a medical professional was specifically endorsing a company. Bizarre. Then she became more bizarre by telling me I should watch The Biggest Loser because it would inspire me to lose weight! I felt like saying “I have a blog talking about that show…” but she didn’t listen to a word I said. From the moment I set in that office she had me pinned as “another fattie trying to get an easy answer”. I’m sure she must get that a lot but in my case I was the exception to the rule. There are valid signs that perhaps a problem exists. And even if it doesn’t exist, I think my hormone imbalances are at least worth looking into. No doctor should assume the worst out of his or her patients and everyone fattie or not deserves to be treated with respect.
Believe it or not the appointment got even stranger. I have a birthmark on my head that guess what I’ve had since BIRTH! I’ve had tons of doctors look at my head over the years and never has anyone mentioned a problem. This doctor did about a 1 minute exam on me and then looked at my birthmark and said “Oh you should have someone look at that right away. I would definitely have that taken care of?” In shock I tried to ask why, what was the problem, etc and I got no response. I’m telling you she didn’t listen to a word I said!
Finally at the end she gave me a prescription for a diabetes drug which she said “would help me lose weight.” Of course, she also said “it has side effects like nausea and vomiting (maybe that helps with the weight loss!). I am tested quite often for my blood sugar and insulin and have never been high or on the edge of high. Never. I felt she gave me this prescription because I was fat and it would be the magic pill she thought I was there for. Of course, I have not filled this prescription!
When the appointment was mercifully over I left and noticed the doctor left with another doctor talking about “the surgery they had”. Clearly she was rushed and maybe that is part of her bad behavior, but I don’t think it explains all. This woman took one look at me and made her medical judgments right then and there. She refused to listen, she lectured, and she treated me with disdain. Thank goodness I am at a strong point because in previous years an experience like that would have sent me into tears. I felt so judged by her. I’ve never felt so uncomfortable in a doctors office, or so marginalized by anyone in my life.
The entire experience had one positive effect. Earlier in the day I had been with my trainer and my swim coach. They were both so encouraging. My swim coach thinks if I keep up my current physical activity I could participate in a triathlon in May! I told him “I feel like I have just as good a chance of having a baby in May as running a triathlon! I can’t even run a lap”. Nevertheless, he believes I can do it.
My swim coach, trainer, family, friends blogging community, acquaintances, everyone, has been nothing but super encouraging as I’ve been working to change my life. They have all been the opposite of this mean old witch of a doctor. I immediately told my referring doctor to not use her anymore and explained what had happened. I also told my insurance company and got a different doctor to try.
Finally I called the office to get my records sent and complain. I still can’t believe the receptionists response to my complaint:
“We get that a lot” and then she added “She’s from the East Coast.
I told her that I’m from Maryland and folks there still expect to be treated with respect and be listened to. I can handle blunt, even rude but to be treated with disdain is not appropriate ANYWHERE! I don’t care where you live a doctor should never pre-diagnose a person based on his or her appearance. That is wrong and as an East Coaster I am offended by such a lame excuse! East Coast my foot!
Anyway, it was a challenging experience that made me feel uncomfortable, angry, sad and judged but it also reminded me of all the support and love I have every day. Thank you to all of you for everything. I couldn’t do it alone. (I’ve tried and it doesn’t work!).
Ps. Enter my recipe contest. I hope my list of comfort foods hasn’t dissuaded anyone. You can send me any recipe you think is tasty. It can be gluten free, vegetarian, vegan. Whatever. As long as it is good I will give it a try! Send to firstname.lastname@example.org.