Surgery and Diagnosis!

I am finally getting to this post. Recovery was a little rougher than I anticipated but I think I'm finally starting to come around. I went in for my surgery early December 10th morning. They told me to be there by 5:45am. I got all prepped and they took me back around 7:30am. They told my husband it would be about an hour-long surgery. I was told the surgery went very well. They were able to go in and get enough tissue of the lesion for the biopsy while still preserving the pituitary stalk. According to the the report, the lesion involved the whole stalk so I thought that was pretty impressive. They then cut a small incision in my stomach and took some fat so they could patch the hole they had made in my head. At some point, they also did a lumbar puncture but I'm still not quite sure when or why. I just noticed my back hurt after and that's what they told me. My resting heart rate normally sits in the 40s which is low for the average person. During the surgery, my heart rate dropped down into the 20s which they don't like too much. According to the report, it happened while they were patching the hole with the fat graft. I overheard the anesthesiologist talking about it as I was trying to wake up. Apparently he gave me something and it resolved after they readjusted the graft. My husband told me the surgery ended up taking about two hours. 

After I spent some time in the recovery room, they finally took me down to my room in the ICU where my husband was waiting for me. It was almost noon by that point. I had the worst headache and kept needing to go to the bathroom because they had not given me my medication for my antidiuretic hormone. I finally told them just to leave the bedpan under me because it was getting ridiculous. Things calmed down when they finally gave me my medication. Unfortunately, I spent the entire time in the hospital and next week with a debilitating headache. Nothing would touch it. I thought my spinal headache was the worst headache but at least I got some sort of relief when I would lay down flat. I could get no relief with this one.

My cortisol was low after the surgery so I had to be put on hydrocortisone. My sodium levels were also a little wacky which is why I ended up spending all four days in the ICU. I also noticed my vision is different which still has not resolved. I plan on getting it checked after the holidays if it doesn't improve. I was so thrilled when they told me I could finally go home on December 13th. The ICU is not quiet and there are people coming in every hour, nurses, doctors, lab personal, housekeeping (and why is housekeeping coming in at 3 AM?!). Even if my headache wasn't already keeping me awake, there is no possible way a person could get any sleep in there.

I had lots of visitors who kept things on the up and up since I couldn't watch movies or do anything that required me to focus on something because of my headache and vision. My mom stayed with me the whole time, even sleeping on the extremely uncomfortable fold-out couch bed. I also had visits from Carrie, Emily R., Nat (who gave me a blessing), Camie, Emily N., Christy, Bonnie, LaNae and Kaye. Not to mention all those that were taking care of my family at home. I also appreciated all the numerous texts I got before and after the surgery with prayers, well wishes and just checking in on me.

Now for the exciting news. I finally have a diagnosis!! I have lymphocytic hypophysitis. You may recognize that term from reading my blog before. It was always on the table as a possibility but they could never determine for sure if that's what it was especially when it did not respond to the trial round of steroids. In fact, they started leaning against it. Lymphocytic hypophysitis is defined as a neuroendocrine disorder characterized by autoimmune inflammation of the pituitary gland (thanks google). My neurosurgeon is going to set me up with a rheumatologist now to get me on a treatment and management plan. He is hopeful that because they were able to preserve the stalk I may even get some of my hormones back! I recently joined a facebook group of others with LH and it sounds like I still may have a long road ahead of me but it feels so good to know exactly what we are dealing with now and there are not questions. Merry Christmas to me!

Thanks for all the love, prayers, fasting, meals, rides to school, gifts, hugs, texts, calls, etc...etc...etc. I have the best dang army out there! God is good. Sometimes His road is not our road but just keeping trusting in Him. I still don't know THE reason I am going through all this. I don't know that there is ONE reason. I can already see I am not the same person I am today than I was even 6 months ago. Just keep trying to keep my focus on Him. Merry Christmas everyone! 

Angels

Here it is almost midnight. My anxiety is climbing by the minute but my heart is so full of love and gratitude. There are some pretty incredible human beings out there. I can’t even find the words to express how I am feeling right now about these people. Incredible, amazing, wonderful, remarkable....these words are just not enough. I have had numerous visits and texts full of love, hope, encouragement and prayer. People are offering meals and to be on call for whatever I need when I need it. Tonight, our doorbell rang and there was an envelope and a bag of chocolate on our doorstep. No sight of anyone. Inside the envelope was a beautiful card and $400. WHAT?!? I have been trying to avoid thinking about the cost of this surgery with medical bills already piled up. What an absolute angel, whoever you may be. I feel so undeserving of all this. Thank you a million times a million is just not enough. God is good and I am beyond blessed that he surrounded me with all of you. May he bless each and every one of you. I hope that one day I can be the angel you have been for me.

Hope

I met with my neurosurgeon yesterday along with my husband, Dayv. He showed us the new images from my last MRI as well as the old ones. Dayv has never seen them before. He said the dosage of steroids I was given should have at least shrunk the mass significantly if not completely like he has seen before in other patients. Mine showed no change at all. He said we could still sit and wait however, I could be sitting on something that could be very serious. He also said I’m not risking much by doing the biopsy. If it keeps growing, I will lose more hormones anyway. And there is that chance I won’t lose any hormones by doing the biopsy.

Dayv and I have discussed this whole thing quite a bit. Before my appointment we had pretty much already came to the decision to go ahead with the biopsy but I still had some apprehensions. I asked my doctor if they would know for absolute sure what the mass was by doing the biopsy. He said they may have to send it out which may take some time but YES, they will find out for sure. After hearing all he had to say, I felt at peace with the decision to go ahead with the biopsy. Although I am still nervous about the actual procedure, I am actually feeling excited to FINALLY find out what we are dealing with and moving forward with a plan of action!

My biopsy will be Dec 10th. On Dec 9th I will go in for a CT scan which will serve as a gps so they know exactly where to go. On Dec 10th I will be admitted and they will go on through my nose, through my pituitary to the pituitary stalk and take a piece of the mass. Cerebral fluid will leak from the incision. They will then take some fat from my stomach to patch the hole (I wish they would take some extra!). I will spend two to three days in the hospital. During my stay they will do a full work up to check my hormones and see which ones, if any, were affected before I leave the hospital. I will not be allowed to lift anything and my recovery will be 1-2 weeks. I asked about going back to work the week before Christmas break and he said he would wait to go back to work after the break. So I guess my Christmas break will start a little early.

Is this finally the light at the end of the tunnel? I am very hopeful!

Side note: my face is looking so much better! I still have a little redness but my preschoolers have stopped asking about it so it must not be very noticeable!

Results

I tried really hard not to get my hopes up that I would finally have an end to my crazy health journey; that I would finally know what I was dealing with and have an actual treatment plan. Unfortunately, the hopes were up and came crashing down. The journey is not over. The results of my MRI came to me this morning. I quickly scanned the report and read, "no change in the masslike enhancement along the pituitary infundibulum (stalk)". Yep, NO CHANGE. The steroids did not work. But wait, it gets even better, "there is a small enhancement along the right lateral wall of the third ventricle that COULD represent a small additional lesion". Really?? Trying not to get hung up on that one too....

So, I guess biopsy is next. Fortunately, the doctor scheduled the biopsy date when I started the steroids just in case we needed it. It will be on Dec 10th. Last time we talked he said I would be in the hospital for 2 days. I was hoping I wouldn't need to know so I never asked him about the recovery time after I got out. He told me I would most likely lose all function of my pituitary but there is still a small chance I won't. That, of course, is what I'm praying for. I will be meeting with my doctor on November 25th (unless there is a cancellation that comes up earlier) to discuss everything before the date of my biopsy.

I've been praying that I would be able to accept whatever outcome came from MRI. I honestly don't think it's totally set in. I can tell I'm trying not to think too hard about it. There are too many what-ifs. I know there is a reason I'm still going through this. I've been told that a few times. There have already been some pretty amazing things that have happened to me because of what I'm going through. I'm tired but I think it could always be worse.  

It's going to be a long 33 days but I'll be ok.   

  

What is this??

On October 14th, I noticed something on my chin. It almost felt like I was breaking out but different. I ignored it for some time until it started oozing. I turned to friends, family and google and came up with impetigo. It’s not common for adults to get but I do work with preschoolers and was told the steroid I have been taking would weaken my immune system. Fall break had started (Oct 17) and I was able to get into the doctor right away. He agreed on the diagnosis of impetigo and sent me on my way with an antibiotic.

Two days later, there were several more oozing sores and the pain was almost unbearable, especially at night. I could not sleep at all and it was affecting my mouth and throat making it hard to eat. Everything I had read or heard about impetigo was not what I was experiencing. I decided to go into InstaCare and find out if that’s really what it was. The doctor looked me over and said yep, it’s impetigo and sometimes it acts like that. She said maybe the steroid was not allowing the antibiotic to work as well and to give it more time.

That night was horrible. The whole right bottom side of my face, mouth and throat felt like it was on fire. When I looked in the mirror the next morning, I had even more sores and they had spread up my face onto my ear. I really didn’t want to have another doctor tell me it was impetigo but I knew something wasn’t right. So, Dayv took me to another InstaCare that was open on Sundays. I told the doctor all that had happened and showed him the pictures I had taken of how it progressed. He got a closer look and said, this isn’t impetigo, it’s shingles! Oh my gosh, that makes SO MUCH more sense!! He decided to have me keep taking the antibiotic since I had started it and added an antiviral “horse pill” med that I took 3x a day. He also gave me an opioid for pain. Which, I might add, did not even touch the pain.

The sores finally stopped spreading and two days later, it looked like things were finally starting to heal. The very first sore developed a dark black scab over it. I had taken two days off of work and when I returned, my preschoolers had lots of questions about the condition of my face. It still looked pretty gross but there was nothing I could do to cover it. Your face really is the worse part of your body to have stuff going on like that. I had one coworker think The scab was food on my face when eating lunch 🤦🏽‍♀️.

We are almost 3 weeks out now. The black scab finally came off today and left a nice deep impression. There is just a little bit of redness. I’ll occasionally get shocks of pain especially up to my ear. I also am still having problems with my equilibrium, which I’m guessing is because the sores had developed on my ear. But, overall I’m feeling so much better!

In other news, I’ve got 3 MORE DAYS until my MRI where we check to see if the steroids have done anything to shrink the growth on my pituitary stalk. It is scheduled for Tuesday, November 5th! Here’s hoping and praying 🙏

And THANK YOU, THANK YOU for all your love, prayers and service! While completely miserable with the shingles, I had a dear friend text and offer dinner that night and another dear friend brought over dinner and the best care package I have ever received. I am so, so blessed to literally be surrounded by angels. I have also had so many people tell me how much they have been thinking about me and praying for me. There are not words to express how incredibly grateful I am for all of you.

Peace

I didn't get a lot of sleep last night. I think I finally fell asleep around 2am and was up again around 5. Too much was rolling around in my head. The more I thought about what I needed to decide, the further away from making a decision I got. I prayed and I just let it all out. I needed something. Shortly after my appointment with the neurosurgeon, I started thinking I wanted to talk to my endocrinologist. I just wanted to hear his thoughts on what the neurosurgeon had said. My endocrinologist is extremely busy. I wasn't sure how soon I could get in to talk to him if I made an appointment. I thought about just calling and talking to his nurse but I really wanted to talk to him personally. I decided I would actually go to his office and see what I could get to happen but wasn't sure what to even say to the receptionist. I keep trying different scenarios out in my head as I was getting ready for work this morning. Suddenly my phone rang. I looked down and saw the clinic name my endocrinologist is at (as well as most of my family's other doctors). It was 7:35am. I immediately thought, is that him? And quickly thought, no way! But why would anyone from the clinic be calling me this early, they're not even open? I picked up and IT WAS HIM!! I couldn't believe it! He knew I had had the lumbar puncture done but didn't even know I had been in again yesterday. He just called me out of the blue. But I knew, it wasn't out of the blue. God is so good. I updated him on everything and then asked him his thoughts. He said he would start with the steroids. He also said he would give me a glucometer so I could track my blood sugar and report it back to him. If necessary, he could put me on medication if my blood sugar got too high. He seemed very optimistic that it wouldn't be a problem. He told me to let him know which way I decide and that was that. I am still in shock but really shouldn't be. God is so aware of each one of us.

I have talked to several other people including my gynecologist, and one of my most favorite nurses (my sister in law). Obviously, I have also prayed a lot and came to the decision to go ahead and try a round of steroids. I will be on them for three weeks and then we will do another MRI to see if it has shrunk at all. I also have a date of December 10th for a biopsy IF the steroids do not work and we need to do one. I still don't like the idea but I feel at peace that this is what I need to do right now. So if I look a little fluffier the next time you see me, you'll know why.

1 step forward, 3 steps back

Neurosurgeon visit #2. Lumbar puncture that resulted in headache from hell came up with no helpful information. Just to recap, the growth of my pituitary stalk could be an array of different things that fit into two categories, inflammatory autoimmune OR pituitary tumor. Therefore, the doctor presented me with two options:

Option #1: Try a round of steroids for a few weeks and then do an MRI. If the growth shrinks, we know it is inflammatory. If it doesn't we know it is a tumor but we don't know what kind of tumor. 

PROS - cost less, less invasive, can start right away

CONS - will gain weight, will raise blood sugar that would potentially send me into the diabetic range (recap from a previous post: I am considered prediabetic. Nobody knows why because I have ZERO risk factors.)

Option #2: Do a biopsy which entails going through my nose, through the actual pituitary to the stalk. Fat from my stomach will then be taken to patch the hole that this would create so that cerebral fluid does not continue to leak out. As I have found out cerebral fluid leaks are BAD NEWS. I will then stay in the hospital for a couple of days. 

PROS - I will know exactly what it is. 

CONS - I will most likely lose my thyroid function and cortisol. I cannot schedule it until the middle of November. Costly, I'm sure. 

Now, it is possible that I may have to do both options. For example, if I chose to do steroids first and they don't work, I would then have to to do the biopsy to see what kind of tumor I have because you treat them differently depending on the type. And vice versa, if I chose to do the biopsy first I could find out the growth is, in fact, inflammatory which would mean steroid treatment. The doctor says he could go either way and it's up to me. He doesn't feel like one is better than the other.   

Here is one of my biggest frustrations, my endocrinologist had already mentioned these two options but knowing the cons of both, he didn't know which way to go. He referred me to the neurosurgeon to basically make that decision. So, in reality, going to the neurosurgeon really didn't give me any more answers because he came up with the same options and left it up to me. The only thing he did say is not to wait, that I should pick one of these two options. 

So, if anybody has an opinion, either way, I'd love to hear it. 

Embracing Uncertainty

I definitely hit the in-law jackpot when I married into my sweet husband's family. Although a bit strange at times, they are some of the most loving, caring people I have ever met. His family decided to hold a family fast today on my behalf. One of my brother-in-laws and his family just called me on FaceTime to let me know that they loved me and that all of them, including my sweet nieces and nephew, fasted for me. Which is not an easy thing to do as an adult, let alone when you're a child. I am so deeply touched by their faith and their love for me. I do not feel deserving of any of it but I am so incredibly grateful for each one of them nevertheless. I know many are praying for me. Thank you from the very bottom of my heart. I feel your prayers and my Heavenly Father's spirit is so near. 

My back is still sore. I was told that the pain should have gone away by now. I'm hoping that it doesn't turn into something else or becomes a chronic problem. I heard back from my doctor's nurse that my doctor is gone on teaching assignments and the soonest appointment they had is on September 30th. So, more waiting again for the next step. You would think I would be used to this by now but I was pretty irritated.

I recently listened to a podcast that really wasn't referring to health problems but being in the circumstance I am, I took it that way. She talks about embracing uncertainty. "The only thing that is certain is uncertainty." I think the hardest thing for me is not knowing what I'm really up against yet. I decided to research that a little more and this is what I'm going to try and do to embrace uncertainty:

*Go slow and lean into the pain - I want everything to hurry up so I can avoid the pain and unpleasant feelings that keep surfacing. Instead, I am going to work on leaning into those tough feelings and try to understand them. This also involves taking a break when I need it to build my strength too.

*Giving myself permission to relax and let things take its course - There is a lot to think about and stress about. I frequently find myself playing the "what if" game. Here's the thing, things are going to happen the way they are supposed to whether I stress about them or not. So, it's just not helpful to stress.

*Have faith -  Sometimes faith can be easy and sometimes it can be so dang hard. Just got to keep trusting in Him!

Pain in the Head

I have been very lucky, I have never had a migraine and have not even had that many bad headaches in my lifetime. I think I got to make up for that this past week. Since last Friday after my lumbar puncture, I have had what they call a spinal headache. When they did the lumbar puncture, the hole that the needle created in the membrane surrounding the spinal canal did not seal properly. The spinal fluid was leaking from the hole into the nearby tissues. This causes there to be less fluid around the brain and results in a spinal headache which you might as well call "headache from hell". The only relief you can get is from lying flat on your back. No amount of drugs will even touch it. I continued to work during this time, lying down any chance I could get. It got a little ridiculous. I finally contacted the nurse and ended up having what is called a blood patch today.

A blood patch involves taking a sample of your own blood and injecting it next to the puncture hole. It forms a blood clot that presses against the hole to stop the leak. It hurt like heck but my headache is about 90% gone now. My back, however, is a different story. But, hopefully, that pain will go away as well. My poor kids, one parent is in a different state and the other has pretty much been bedridden. They have all been pretty good about the whole thing and have helped their momma out so much.

Trust in You

I won't lie. Today's appointment was difficult for me. Not really sure what I was expecting but I walked out feeling a bit blindsided. I met with a neurosurgeon today. He looked over my MRI scans, bloodwork, asked about my history, etc. The term he used to describe my pituitary stalk was "grossly enlarged". He said it still could be an array of different things but he did not believe it was lymphocytic hypophysitis by the look of the scans. (That was the condition my endocrinologist was leaning towards.) He said it could still be an inflammatory autoimmune disease or some sort of tumor. He also said it is possible it is not a pituitary tumor at all but actually a brain tumor that has settled into my pituitary. This has never been on the table before and quite frankly scared me. He said the first thing he wanted to do was a lumbar puncture and some more blood work to see if anything shows up. If nothing shows up, he said he would definitely want to do a biopsy. The impression I always got from my endocrinologist was that the biopsy was risky but it didn't mean I would lose all function of my pituitary. My neurosurgeon said because I've already lost my anti-diuretic hormone and my sex hormones, I would be guaranteed to lose the rest by doing the biopsy. Which, he said, I'm already headed in that direction anyway. He said he wanted to get on this right away and I agreed. The lumbar puncture was done right there in the office. I should hear back on that in a week.

It was a lot to take in with phrases like brain tumor, loss of all pituitary function, grossly enlarged.... I'm still processing it all. So much still left unknown. I keep trying to go on with my life since this all began a year and 3 months ago but keep getting taken back off track. I continue to have an amazing support group between all my family and friends. My husband has been working 500 miles away for the past month or so. That's been difficult for both of us but I never feel completely on my own. My family and friends are always there for me, near and far. It still blows me away how much you care. Thank you from the very bottom of my heart.

I also keep trusting in my Heavenly Father and Savior whom I know are right by my side and have been since day one. I love the song 'Trust in You' by Lauren Daigle. It describes exactly how I feel so perfectly.

Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You see

I've tried to win this war I confess
My hands are weary I need Your rest
Mighty Warrior, King of the fight
No matter what I face, You're by my side

When You don't move the mountains I'm needing You to move
When You don't part the waters I wish I could walk through
When You don't give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

Truth is, You know what tomorrow brings
There's not a day ahead You have not seen
So, in all things be my life and breath
I want what You want Lord and nothing less

When You don't move the mountains I'm needing You to move
When You don't part the waters I wish I could walk through
When You don't give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

I will trust in You!
You are my strength and comfort
You are my steady hand
You are my firm foundation; the rock on which I stand

Your ways are always higher
Your plans are always good
There's not a place where I'll go
You've not already stood

When You don't move the mountains I'm needing You to move
When You don't part the waters I wish I could walk through
When You don't give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

Next Stop: Neurosurgeon

I was hoping there would be no more stops, that my crazy health journey would come to an end and I could settle down for a while. Nope, not this time. I had more blood drawn and my third MRI at the end of June. I met with my endocrinologist today to discuss the results. All blood work looked good except my A1C is still high (5.9). I talked to him about LADA (Latent autoimmune diabetes in adults) and he agreed it was a good thing to explore considering I am not your typical diabetic candidate. They took more blood to test my antibodies and said I should hear back in a week. If I test positive for at least one antibody, I have LADA.

The MRI was concerning. When they measured the widening of the pituitary stalk last December, it was 7.3 x 4.6 x 4.1 mm. This last MRI showed it is now 8.4 x 5.4 x 4.9 mm. So, it has increased all the way around. The doctor noted that it could still be Lymphocytic Hypophysitis but since it is growing, there is more of a possibility it is a tumor. However, as I've said before, the only way to find out for sure is a biopsy which carries some significant risks such as losing the entire function of my pituitary gland. So, my endocrinologist is sending me to a neurosurgeon with all the MRIs and letting him make the call. He sent in the referral today and I will hopefully hear back soon.

It was very discouraging to hear I had yet another doctor to visit and more questions instead of answers but I'm learning (slowly) to just take it one day at a time. This is out of my control and just trying to give it back to Him who is all knowing. As always, I appreciate all your loving thoughts and prayers. I am incredibly blessed with the best family and friends, more than I deserve.

Diabetes what?

Ready to be really confused? Here we go again... My estrogen level ended up checking out great with the March test. Good news there! I had my appointment with my endocrinologist on April 11th. I told him what was going well and a the few concerns I still had. One major concern I brought up was that I was still not losing the weight I had gained since this whole medical journey started. He decided to run a few tests: prolactin, testosterone, cortisol, a comprehensive metabolic blood panel, a complete blood count and my A1C. Nothing too concerning except for one thing, my A1C. For those of you who don't know, like I didn't, a A1C tests your average level of blood sugar over the past 2-3 months. Individuals with diabetes (mellitus) are given this test routinely. It is also a test used to diagnose diabetes. An A1C level below 5.7 percent is considered normal. An A1C level between 5.7 and 6.4 percent is considered prediabetes. An A1C level of 6.5 percent or higher indicates type 2 diabetes. My level was 6. That's right, I am now prediabetic. I was floored. The medical assistant who was the poor soul who had to relay this information told me my doctor told her I would be mad. And, he was so right, I was livid! I have ONE great grandpa who had type 2 diabetes, so not really a strong family history there. My BMI is well within normal range. I, along with many others, consider myself as a healthy eater. I exercise 5-6 days a week and am extremely active. This was NOT suppose to happen. And on that note, can I just have ONE diagnosis with diabetes in the name please?!?! Especially since they are two COMPLETELY different disorders?!  

So, just to recap, I have been diagnosed with lymphocytic hypophysitis. They are still not 100% positive on that but nevertheless, my pituitary was compromised. This caused diabetes INSIPIDUS which means I no longer produce that hormone that regulates the fluids in my body. It also caused me to lose all of my estrogen and progesterone. I now have been recently diagnosed with PREdiabetes MELLITUS which means my blood sugar is high and I have a possible resistance to insulin. Two TOTALLY different disorders. Diabetes refers to the urine. Insipidus means no odor or taste, mellitus means sweet because, yes, back in the day doctors used to taste the urine.

If you research anything about how to not develop type 2 diabetes this is what you will find: stay at a normal weight (check), exercise regularly (check), eat properly (check)....um, anything else? I have started REALLY watching my carbs and keeping track of what I eat. I am meeting with a registered dietician on Tuesday to see if there is ANYTHING else I can do differently. 

I had somewhat of a mourning period because it really felt like my body was giving me another slap in the face. The medical assistant kept telling me, after I rattled off all the reasons why this could not happen, there are no guarantees. Which is very true. You can be the healthiest person in the world and still get cancer. It was hard to not feel resentment towards family members who never exercise and drink soda every day. I don't think I am completely passed that but I've come a little ways. I can sit and argue this over and over again, but it doesn't change it. All I can do is move forward, just like every other time. I was told by a friend, think about how much better off you are BECAUSE you have been so healthy conscience and how much worse it could be if you hadn't been. She's right. I really don't think trying to live a healthy lifestyle has all been in vain. My body just likes to keep me on my toes!   

Letting Her Go

My doctor ordered three tests, a mammogram, a CT scan of my chest and an ultrasound of my uterus. He said the PET scan would have done everything these three tests did and more. It also would have been cheaper for the insurance (and me) but this is what my insurance wanted. I had the three tests done.  There was no indication of breast cancer, nothing concerning in my chest, like lung cancer and no uterine or ovarian cancer. Very good news!! This means we can wait until my next MRI. My next endocrinologist appointment will be April 11th. We are still figuring out the right dosage for my estrogen. I took it for the month of January and had it tested the beginning of February. It was still low. So, my gynecologist doubled the dosage and I took that for the month of February and just had it tested again yesterday. I should hear back on those results Monday or Wednesday. The hot flashes have stopped but I'm still quite moody (my poor family) and not losing weight.

I was running with two of my very good running friends this morning and we were chatting about some different things and one of them mentioned letting go of some things in her life. I then got an image in my head of the me today holding onto the me almost a year ago. I was holding on to her so dang tight. I wanted to be her so bad. I wanted to think about the same things she did. I wanted to have her same goals. I wanted be her same weight. I wanted my body to look just like hers. Everything she was, I wanted to be. Then, I let her go. I am not the same person I was before and I will never be the same person I was before. Why would I want to be? That person has not gone through what I've been through. That person has not learned the things I've learned. I am a new version of me and I will continue to learn and grow and change again, just like everyone does. It was so hard to let her go. I've been holding on to her for a long time. I kept thinking she was better. But, I'm ready now. The me today kicks butt!

Denied

My PET scan was scheduled for Dec 26th. I got a call Dec 21st letting me know my insurance denied the scan. They said it was not medically necessary. My doctor did say this was a possibility but seemed pretty confident he could get it approved. The insurance told me the only way to get the denial reversed was doing a peer to peer review which is where my doctor talks to their doctor. My doctor was out of town until yesterday. Knowing how confident my doctor seemed and after talking to a couple of people that are more knowledgeable than I am about how insurance companies work, I wasn’t too worried about getting an approval.

Oh life. My doctor’s MA called me today and said even after the peer to peer review, my insurance denied the scan. They said I would have to have a whole load of other tests done first before they would approve it.  Even after my doctor explained everything and pointed out all the other tests would cost them more money than the PET scan and would not give us the answers we need they still denied it. Their doctor just went down her checklist and would not listen to anything he had to say. This is the first time my doctor has ever had an insurance company deny a service after a peer to peer review and he actually had two. Same insurance company denied another patient of his as well on the same day.

My doctor is going to review everything and see what is the minimal amount of testing I can have done to get the scan approved. More hoops to jump through, more money out of my pocket, more frustration.