#in other news i had my follow up dr appt last week which was not as scary as i thought it would be !!

[noramoons]

good evening bffs 🫡 untitled steamy something with mingi scheduled for sometime later this week !!

(implied/referenced nsfw under the cut)

[unwelcomebraininvaders]

Background info

Unwelcome invaders of my brain

i decided to share this story for anyone who is interested for two reasons:

1. I believe in the power of prayer and/or intentional thoughts to heal. I could use all the prayers/intentions you can send my way starting Oct. 12.

2. It seems therapeutic at this point to write about this.

So here we go:

The first symptoms:

Back at the end of 2020 I had what I presumed was an upper respiratory infection and plugged right ear. Someone I work with had the same symptoms so I thought nothing of it. After this went on for a month or so I made an appointment with the ENT. They treated me with steroids and my symptoms did not go away. I went back and they tested my hearing. The Dr. ordered an MRI without telling me what he was suspicious of. I assumed some blockage in my ear.

The first MRI:

I go for this MRI. The next day I get an email the the results are posted in MyChart. I look at the results and they talk about two different kinds of tumors. I call my ENT and tell the front desk--"hey I'm kind of freaking out--my MRI report is posted to MyChart and it's talking about me having two different kinds of brain tumors--I don't have an appointment to see the ENT for another week. Can you get me in sooner?" The receptionist--"hmm...let me look....No sorry can't see you for a week" In my mind " @$!&*" Okay...it's up to me to look this up on Dr. Google and see what I'm dealing with. I google--Ok well at least they appear to both be benign--that's a relief. Can I just tell you the panic of not even knowing if they were cancerous or benign and having no Dr. appt for a whole week!

The ENT Visit a week later

Him: "It turns out you have an Acoustic Neuroma which is a benign brain tumor...blah blah blah "

Me in my mind: "No shit -- you are now proceeding to tell me everything I just spent the last week researching online" "Do you actually think I didn't look at the MRI report the day it was posted to MyChart"

Now what

So I spend the next several weeks researching whether to have radiation to try to kill the tumor or surgery to remove the tumor. I talk with two doctors who do radiation and three doctors who do surgery. The two who do radiation think I'm a good candidate for radiation. Two of the surgeons think I should do surgery. The third surgeon thinks I can go either way. Great! A tie!! So helpful....not! People in my personal life advocate for radiation since it's less invasive--so that becomes the tie breaker.

Radiation

I take the week off work and have radiation. It's every day for 5 days. I feel tired during that week and the following week...but then it's pretty much back to normal. Other than the hearing loss...I feel like my normal self again! Yay! This was too easy. (yes it was too easy)

3 months later

Wow I have an earache on my radiated side and feel like maybe I have a sinus infection. Go to the PA at the ENT's office....she gives me a CT scan and prescribes an antibiotic for my "infection" and steroid for my "swelling" A few days later...the pain is now stabbing in my ear and radiating down to my jaw and the right side of my neck. Hmmm...that doesn't seem normal. ENT's office is closed...talk to the ENT on call...he looks at my CT scan..."you don't have an infection" (great! so I've been taking antibiotics for nothing) Just continue taking the steroid. Fine....so now I'm also on 3000mg per day of over the counter pain meds just to keep myself somewhat out of pain. 3 weeks later I talk to the Radation oncology PA. She puts my on a different steroid. Take that for a week....no change. Finally after a month of lots of pain meds and steroids...the pain magically goes away to replaced by....facial paralysis.

Facial paralysis

Alright this kind of sucks. My right eye won't blink and the right side of my mouth doesn't do what it should. But at least the pain is gone!! So make appointments with my care team to discuss paralysis...they do another MRI. "ooh look at the the center of the tumor died like it was supposed to" uhh that's great I guess but there are some quality of life issues with a partially paralyzed face. "well we have never had a patient with your kind of tumor have facial paralysis after radiation" "we'd like you to have Avastin infusions". I think to myself--well you guys seem pretty smart...let's try it.

Avastin Infusion

It took 6 nurses to find a blood vessel to get my bloodwork done and start the IV. SIX!! Do blood vessels hide if you're scared They must. The next day oh my the pain on the side of my face again! After two weeks of respite from the pain I was oh so sad for it to be back again. I call the care team...their response "hmm...that's odd this infusion shouldn't cause pain". Umm well it did.

Exploring my next steps

Once a tumor has been radiated it is more challenging to remove. So I call up one of the top surgeons of these kinds of tumors and ask for him to let me know what my next step should be. His patient care coordinator says he actually wants to speak with me...so we have a phone call. I'm expecting him to say..."if after x number of months you aren't getting better then you should consider surgery". What he says instead is "you should get this tumor removed as soon as possible" OK then. I said, can it wait a month -- He said, sooner is better.

Timing is not the best

I guess the only way timing for something like this could be better is if you have surgery when there is no hurry. But with this timeline my challenges are:

1. I have an office remodel starting 5 days before I leave to fly down for surgery.

2. I am in the midst of hiring a new doctor. When do I onboard her

This unwanted tenant will be evicted Oct. 12

This is top priority

[whiterosemarie]

On here I can actually just say what's going on because I'm practically faceless.

I was told last week by hr that since I have no clients, I have to either find work to do that's in the office and people facing, get a dr's note, or resign (so that I can't claim that unemployment money). Can't get a dr's note cause no insurance and my dr is booked out to fucking next year usually but also...she never actually recorded my fucking diagnosis in my chart so you know. So I had to work out of my home much to my high risk. I now am in people's personal space every day as a screener for a health clinic. Today a man barged past me screaming about his hand. I got reprimanded and told I need to be more aggressive and let no one through...but also..."you risked everyone's lives today by letting someone in without screening."

Which hit really hard considering that I'm risking my life every day screening 10-20 people a day...and they only actually see maybe, MAYBE, 5 people a day in comparison. Because I take care of clients at the door if they don't have an appt or need to come in. So...my life is at risk, yeah? But one guy bursts in and refuses to stop and my words are supposed to magically stop him and I put EVERYONE ELSE at risk.

Which...I got over after a little while...

Until I went to the local store for my anniversary cake. I wore my mask and felt confident that aha for once I knew what was expected of me. I should've known better. Every time I step into a store something new has happened. I turn the corner down and aisle for some lemon juice (partner needs it for his kidneys) and this old man says "you cant come this way, they put arrows down, you have to follow the arrows so we're all going the same direction." Which...I hadn't noticed. I thank him and apologized, saying I didn't notice and hurried on to follow to go up an aisle then back down to the juice...

Where I overhear him asking a staff member why "these young idiots can't read the arrows and follow directions."

She responded that its new for everyone and to be patient.

I composed myself and jumped in line. The cashier asked how we were doing. My partner said great. I nodded. She asked me how I was hanging in there. I almost nodded but instead shook my head slowly, unable to speak. She said "Its like my dad always says. This too shall pass. It'll get better honey."

This too shall pass. This too shall pass. Those words were what I chanted to myself nightly for that last year in college to stay alive.

I tapped my partner's back, "I'm going to the car." And I bolted for it. I ripped that mask off, dry heaved then began to sob in my car.

My partner told me she asked if I have social anxiety. Yeah. Something like that. Those words sound tame compared to the symptoms. I can't handle huge changes when they're nonstop and I'm not prepared. I have a deep deep fear of others disapproval of me which causes me to have breakdowns of crying when corrected harshly or when people say something bad about me. It took years to be able to even go into a store again since therapy only helped so much with my mental health and coping with people in loud crowded lowlit places. And now...

Now I feel like regressing and never stepping foot into a store. This is the 5th time a rule has changed at a local store that I've been corrected and shamed for. I'm not doing it on purpose. I'm just...mentally ill. Look, we're lucky I'm not black out dissociative anymore in the store. Much less can see and understand all the billions of fucking signage bombarding me.

I just...cannot.

I am so not mentally well or mentally adjusted or neurotypical or whatever enough for this fucking shit.

[nettheworldonfire]

Bottle v.s. Boob

Breast is Best is our little girl's motto. In fact, if she were old enough, Olive would probably have the bumper sticker. This is why weaning my 6.5 month old, before her body or mine is ready, is a pretty devastating feat. Let me start by saying, I think formula is amazing. I have no qualms with those who choose to formula feed for their or their baby's best interest. Formula has everything a baby needs, built right in, and has the convenience of being able to be given by ANYONE (in theory). I went back to work at 3 months postpartum with Charlie. I was never able to keep up with a demanding pumping schedule, and slowly, my supply decreased, making Charlie exclusively formula fed by 8 months. Knowing I was headed back to work and that this might happen, we got him used to the bottle right away. We made sure he would take formula and everything went very smoothly. This time was different. Knowing I would be home with Olive for a year, I didn’t NEED to bottle feed. Still, I would obviously appreciate a break, or need one to write my dissertation, so we tried the bottle here and there. She would take an ounce on occasion, but often spit that up quickly, and sometimes violently refused, allowing milk to pool in her mouth and causing her to gag/choke.

Finding out that I have about 2 weeks to wean Olive may be the worst part (thus far) of this entire ordeal. Nutritionally, I think we can get her to eat what she needs to. She eats a lot of healthy solids. Fruit and vegetable purees and small pieces of fruit like pineapple, avocado, watermelon, and banana. She's eating eggs, yogurt, a little rice, noodles, and puffed rice snacks. There are plenty of other things I know she can and will enjoy eating - and I have been doing some research on high fat and high calorie foods. We've already started adding formula to yogurt and puree mixes, and she doesn't seem to mind. I can use it as the water in macaroni and cheese, or syringe it in her if absolutely needed. Plus, the pediatrician believes that with the types and amount of solids she eats, as long as we keep her calorie intake high enough (and not let her stuff her face with puffs and teething crackers) she should be fine. The issue is that Olive uses nursing as a sleep aid. When she's tired, that's all she can think about - the mom-nip. She is violently opposed to any other form of nipple entering her mouth, won't take a pacifier, and gets more and more frustrated. She does eventually calm with rocking and bouncing and singing, and will fall asleep in less than 20 minutes. She does not self-soothe and I have no interest in letting her "cry it out" - especially considering what is going on right now. Overnight, Olive cluster-feeds. I know this is more about comfort than hunger, but it works for us. She basically goes right back to sleep, making my life easier and not waking Owen and Charlie, and she's content. She pretty much sleeps for 10-12 hours most nights like this (waking to feed and drifting back to sleep). It isn’t perfect, but it works for us.

Once I realized this would have to soon end, I started keeping track of things. On Tuesday night, she woke up to feed five times. On Wednesday night, when I actively tried to change the routine, she woke four times and one of those times I rocked her to sleep instead of nursing. Last night, she woke up twice and I managed to only nurse her once. This involved one 4:30 a.m. fiasco, but it was manageable. Between the sleep deprivation of this sort of thing and being sick though, I am exhausted. And she generally seems less happy, which makes my heart heavy. This isn't the first time my body has failed me, but it is the first time my body is failing someone I love, and that is hard.

Aside from the emotional turbulence this is causing for everyone in the house, I also have the horrible awareness that stopping nursing will bring back the postpartum period hemorrhage that I so dread. (And I apologize if that was too much information, but want you to be aware this will not be the last time I do that in this blog - so the decision to be grossed out is yours).

Yesterday, I saw the amazing Louisa at the Breastfeeding Resource Center. This organization was a godsend when I was having challenges nursing Charlie as a newborn and I went back with Olive just for a refresher. When I emailed them to ask for tips or help with weaning, they again stepped up to the plate and were kind and informative, making me feel like I had a team of knowledgeable ladies in my corner (I know, I have hundreds out there ready and willing to advise and help, but this resource has just been incredible). That being said, there wasn't much "success" at this appointment. Olive wouldn't take the MAM bottle for them (I purchased one at their request to bring along to appointment). We've now tried the Enfamil disposable nipples (Charlie loved these), Tommy Tippee (Close to Nature), Spectra, the Mamijumi (some minor success), and the Honey Bear sippy cup that the doctor suggested, also. She’s also tried a variety of sippy and straw-style toddler cups. Nothing seems to be quite perfect, but we are going to keep trying. The BRC also gave me a nipple shield, typically used on a break to help a baby who struggles to latch to mom’s nipple. Several people mentioned that this may ease the transition from breast to bottle - so I would like to try (and it saved me the few dollars I was going to spend. Good thing too, because I am spending like $500 trying to find a bottle or pacifier or anything to soothe this little lady). The one thing that Lousia suggested which may be a game changer is birth control. She said many women take it to help reduce their supply. That may really make life a lot better. I HATE pumping. And to pump just to throw away my poisonous milk (that my daughter wants so badly but can't have) would just be torture. And how long will it take for me to naturally dry up? Plus - she could potentially nurse for comfort still if my body isn't dispensing anything into her mouth. I will obviously follow up with my OBGYN about the birth control and lactation question - but the BFC seemed to think this was an option. It could even help with a gradual decrease and therefore, a more natural wean.

I had always planned to look into medication for anxiety and moodiness after I was done having babies and breastfeeding, so I spoke with my primary about that this week. I've been struggling for a few years but didn't want to start anything I would have to stop during pregnancy or nursing, so I held off. I suppose this is a little bit of a silver lining. I am going to start Lexapro to combat some of the anxiety that is obviously getting worse with this looming shitstorm. I took Lexapro for a few months in 2010 when I had a little mental health struggle about six months after my dad passed away. I didn't love it. While I do think it did what I was hoping it would do (which was to help me break a weird cycle of crying/depression), it made me very, very tired (like needed to pull over to sleep during a 30 minute drive home from work tired), and I weaned off of the drug within a few months. I was lucky to not need it again. In 2012, before my Whipple I had HORRIBLE anxiety and a few attacks for which I was prescribed Xanax to help calm me (just a few days before the procedure). That definitely worked, but I felt under the influence at work, and probably shouldn't have been driving - so that wasn't ideal either. We will see how Lexapro does this time around and if I don't see much of a change - I may be asking you all for your favorites. My doctor is starting me on a very, very low dose to try to avoid the exhaustion, and we will go from there. Think happy thoughts.

In other news, after getting booted to Thursday for my biopsy, I got the automated call reminding me of my Monday appointment today. So I tried to speak with a real human and couldn't get ahold of anyone to check. It would be nice to know if I am having a procedure on Monday before Monday (for childcare, my mental health, planning, etc.) so if you have any idea on how to get this information (hospital is Nazareth) then please share!

On Monday, I have to call the OBGYN, the pediatrician, and Penn (to schedule my second opinion, for after the biopsy results are in).

* Dark side: Denying your baby a basic necessity is totally depressing.

* Bright side: When Olive is weaned, I am going to get so freaking drunk, you just watch.

* Next steps:

2/20/20 at 9:00 am - Liver biopsy under sedation (or is it 2/17/20 at 11:00 a.m., who knows)

3/2/20 at 10:15 am - Oncology appt. with Dr. Rose

* Inappropriate, but totally relevant, GIF -

[penguinrecovery96]

Update Time  *Trigger Warning*

I haven’t really done a post on here in what feels like ages! That is primarily based on the fact that I have been doing absolutely fucking shite. Both my mental and physical health have been deteriorating and just feeding into one another. If you are physically ill you are bound to feel awful mentally too. I was already struggling anyway but now things are really bad. It is different to where I was at last summer. I am not actively suicidal but “risky behaviours” are intense. The problem is that I am completely desensitised to this risk taking behaviour and it does not seem as severe as professionals are telling me so their reactions seem extreme to me. 

I ended up taking an overdose at the beginning of the month. This was following an extremely stressful appointment with my care coordinator (who will be referenced throughout this post as N). I knew this wasn’t the right way to deal with how I was feeling so I disclosed this and obviously went to the hospital following this. I believe this was the subject of my last post so I will leave it here.

I told N that I would engage with HTT (otherwise known as crishit team) and I had an assessment with them. This went badly and I wrote a well thought out letter to N stating the reasons why this was the wrong service for me. She just thought I was being very BPD and overemotional. Because I was refusing everything and we just had oposing views and I was really struggling things came to ahead. N ended up saying that this was it and she was going to take me to A&E to get admitted there to a psych ward. I somehow managed to convince her that that did not need to happen and surrendered to HTT. 

This is were things just plateaued.

I received no support for a week and a half. Nothing from HTT. N was ignoring my texts and anxiety took over. I completely shut down. I pushed away all of my friends and family. In came some new “coping” techniques - ligaturing and using meds to sedate myself. 

As you will have learnt by my last post I was diagnosed with anaemia. This alongside acid reflux (and probably another medical diagnosis that has not been fully explored yet) made me really physically unwell and upped the anti of this relapse. 

So using medications to knock me out, feeling like complete shit and a hot BPD mess of a person, bulimia knocking me for six, ligaturing and overdosing is what my time over the past few weeks has looked like. N also went off work sick and didn’t return until late last week...

HTT got involved but I still wasn’t actually receiving the care that I had been told I would in the way I would. It was very hit and miss and it wasn’t like they were actually doing anything for me. 

I took a small overdose on 31st Jan which I told HTT about when I spoke to them on the friday. I only disclosed this because they knew I had been overdosing. This was not a big od at all yet they made me go to the hospital. So obviously I was pissed because my Dad was off work so I had to go because I didn’t want the police or an ambulance turning up at my door, especially because my Dad had no idea I was struggling. I also had an appt prebooked with HTT and the hospital and their base are in the same location. I went and had bloods and ECG done. I was feeling awful physically and just wanted to sleep. Mentally, I was annoyed and triggered by being at A&E. So I left. When it got to my HTT appt, I did go but it was massively interrupted by a phone call by the hospital to the team asking me to go back because of my anaemia in order to discuss treatment further with them. I was reluctant because I just thought it was very basic info like taking iron tablets and that I was just going to sit in A&E for ages. I spoke to the doctor and they also spoke to the nurse I was with and it did just seem routine. They convinced me to go back so I did, was triaged again and then eventually a different doctor called me through. He took me through to a room in majors and said “You know you have anaemia right?”, I replied “yes but its a very new diagnosis”. He said “Yep, you need a blood transfusion” with such intensity. I was extremely shocked because this was definitely not what I was expecting! I definitely didn’t want to be in hospital and I didn’t think things were that bad. I think I will do a seperate post on this in itself but this was an extremely intense night which massively triggered my mental health and I really did struggle with it all. Least I know my blood type now though, it is 0 Positive for those wondering. I am definitely not like my blood type right now!!!

I was only in overnight thank god but things didn’t improve in the slightest. I am having a bit of difficulty with dissociation and obviously everything all together and they way I am dealing with it all doesn’t help that and so I am struggling to remember things and remember days. Everything is merging into one so it is making it hard to make this post. 

Next thing I remember it is Monday 4th January.

I had a 3pm appt with HTT and N. I was looking forward to getting to see N, hoping that she was okay now after her sick leave and thinking that I would have time prior to the appt to speak to her. This wasn’t the case. N arrived and we all went in. I gave N a note that basically updated her on how things had been. HTT said they wanted to review how I was doing and my thoughts on HTT’s involvement. I said that I didn’t think it was necessarily helping and that things have just gotten worse. I mentioned that I needed it to stick to a small group of people that I see like we had originally planned and if someone different has to see me to try and notify me beforehand. 

Then I really do not know what happened.

All of a sudden N said “I think this is the end of the road now Hannah. I think we have gotten to that point.” I was just baffled. They were admitting me to hospital!! I was seriously, even at that point just thinking that it would be a go home and we will find you a place to go but it will be a few days to maybe a week kinda situation. Nope. I was wrong! And Naive! 

Nicola said that I look like shit and that she thinks I have lost loads of weight since she saw me last. (I will do a  more in depth post about this particular day and maybe a more in depth post about the actual ward I was on too). 

I spent from Monday night until Thursday evening on an assessment unit. This place completely ignored my eating disorder which was fine by me cause it meant I could just easily lose weight there. It was better than the wards I have been on but still I only ever left my room late at night when the other patients were in bed, to go to the clinic or see staff/drs/etc or the three times I was allowed to leave the ward. I self harmed x3, ligatured x2, didn’t eat anything at all and I ended up absconding and taking an overdose. These don’t make it seem so great and alongside the fact that I did not receive the appropriate treatment for these things, yeah not great. 

Finally, I have been out for 3 nights now. The follow up treatment has been appalling! It has left me feeling again like cutting services out of my life and going at it alone. Things are not good and I am not coping I am not going to sugar coat it but I have not received any support since leaving hospital. My care coordinator is off again (this time I think its a holiday) and no one seems to know when she is returning. But I am kinda done with services. I sat there in tears the other day speaking to the manager of CMHT and told her straight that it would be easier if I was actively suicidal because I would have just done it and taken my stockpile but I am stuck with cutting, overdosing, ligaturing and the ED stuff in order to manage it all. She did not respond to that one. Its true though. Im a coward and it would be easier to be in the place where I’d just take them all and end it. 

Stupid.

This is my sad, pathetic and bland, cyclical life. Thank you if you read all of this.  

[mentallystrongphysicallyfit]

Riding Solo

I have had a lot of appointments this week. Here’s what I’ve had and how they went (this got REALLY long, so I put the rest below).

Monday - follow up evaluation with Physical Therapy for knee pain. I injured my knee at the end of December, but was scared and didn’t go to the doctor until February. I did 6 weeks of PT and I have greatly reduced the pain in my knee! The main cause of pain in my knees and hips is still weight-related, but I’m working on that! I’ve successfully finished my current PT!

Tuesday - first follow up (since the initial appt in November of last year, when this Dr referred me for evaluation for B.E.D.) with the weightloss surgery doctor. This doctor was the one who I had to thank for all the help I’m currently getting!!! I’m so glad that she saw something in me and knew enough to make the right decision to get me evaluated! Anyway, I was extremely nervous to go to this appointment because I’ve never gone alone. Usually I have my mom or husband to support me, but my mom is out of town and my husband needed to go into work, so I was riding solo! I stepped on the scale and the immediate thoughts running through my head were negative and distorted. It’s hard not to evaluate myself and my self worth based on the number on the scale. I felt like the nurse judged me and I started to panic thinking this appointment was going to be out of line with the therapy and treatment I’ve been doing for binge eating disorder. I finally saw the doctor and she was less intimidating this time, and she is a really good doctor, possibly one of the best doctors I’ve EVER seen. She LISTENED TO ME and gave me the best advise and course of treatment. I’m so glad I’m going through this process with her. She asked what I think the problem is that is currently preventing me from losing weight. I told the doctor that it takes a large amount of food for me to feel physically full. She decided to prescribe me a low dose of Topiramate, an appetite suppressant. I took my first dose last night and my second pill this morning. I can already tell the difference. I think this is a game-changer! I’ll keep you updated!

Also Tuesday - Binge Eating Disorder therapist appointment with Michelle. I have really enjoyed my personal therapy sessions. We always talk about whatever I’m struggling with at that time. She is so helpful and gives me tools to combat my distorted thinking. This week we talked about my thoughts surrounding my weight. The number is something that always seems to send me into destructive thoughts, which leads to binge eating, which leads to more destructive throughts, and then more bingeing and so on and so on. First, I have been able to identify the thought, and then challenge it. I’ve only been in therapy for a little over two months, but I’ve learned so much and progressed so much!

And also still on Tuesday - Binge Eating Disorder Nutritionist appointment with Sharon. In the past, going to see a nutritionist always ment a lot of rules and guidelines around what to eat, when to eat, how much to eat, etc. All of these things. But for anyone with Binge Eating Disorder, these rules and strict eating guidelines can do more harm than good. Instead, with my nutritionist I talk about food in a new way. All food is just that - food. It isn’t good or bad (no judgements) but instead it is just food. The first thing I’ve had to learn is that it is okay to eat. Diet mentality has me brainwashed into believing all these rules about eating that have led to me having distorted thinking, which leads to bingeing. Just being given permission to eat when I feel hungry has actually cut back on my eating because I stop and ask myself “am I physically hungry or just feeling some other emotion that is driving me to eat.” It has been a huge change in my thinking about food. We’ve focused on so many other great things together, but the thing that we reviewed this week is the H.A.L.T. way of thinking. It gives the four main reasons people eat. H stands for hunger, which is our body’s cue that we need energy or food. A stands for Anger/Anxious, feeling these emotions can lead to eating. L stands for Lonely/Bored and T stands for Tired. If you can HALT before you eat and figure out which reason you are using to eat, it will help you make the decision if food will fix the problem. The only one of these that food fixes is if you are Hungry. Otherwise, food might make you feel better in the moment if you are bored, tired, upset, but it will only mask these things until they come back. I’m tracking my eating in an app called Recovery Record. This is so different from all other types of food tracking methods because it doesn’t count calories or points. Instead, it asks you to identify emotions when you are eating, and there is also a small place to journal your thoughts. This has proven very helpful for me! I encourage others who are struggling to use it! Our appointments are only 30 minutes, but I learn so much from them!!

Friday (today) - Binge Eating Disorder Group. This was the 6th week of a 17 week group/class. This isn’t a traditional “group” where you sit in a circle and talk about your feelings. It is more like a class, an education in this eating disorder I have and a group of four other women who also struggle with Binge Eating Disorder. It is a three hour class, which sounds like a long time, but it really does goes quickly! The first hour is led by a therapist, Lisa, and we discuss different ways of battling our distorted thinking. It’s great to have other people to bounce ideas off of who get it. The second hour is with a nutritionist, Niki, who gives us tools for how to deal with eating situations that come up, or with guest speakers who come in and talk with us. The third hour is a meal. We work on the skills we’ve talked about. It has been great!

If you made it this far, thank you so much for reading!

[revol-lover]

i’m kind of back to not being sure about how i feel about my ob office. i unfortunately dont have any other option so i have deal with it regardless but, when i had my appointment w the midwife to be prescribed the pill to help along the miscarriage she told me that when i came back i’d have an ultrasound to make sure it was going smoothly/tissue was gone. so i get a call this week to schedule that appt and it was kind of hard because its not an easy thing (in this office i guess) to book a last minute u/s and dr follow up (they wont let me see the midwife for this appt even tho she was more helpful/knowledgable than the md?). so finally they decide to have me come in for an u/s at 7:45 am and have the appt w dr at 2:30 pm that same day. kind of annoying but not the biggest deal because i want to make sure this is all handled correctly. so i asked ONE question. all i asked was if they’d be able to look at the sepetation in my uterus at this u/s because the midwife mentioned that they could. i would have had it looked at yesterday at the nuchal translucency u/s i had planned but had to cancel because i had a miscarriage so i couldnt go to that appt anymore (also cause it was going to cost us ~$450 out of pocket so deff not going if i’m not pregnant you know?). so i’m on hold for freaking forever only for the receptionist to come back and tell me that the dr said it’s “not necessary” for me to have an u/s and i only have to see the dr. 

i dont get it. when i saw the midwife she stressed the importance of a follow up u/s after the miscarriage. when the nurse called me to schedule me she also stressed that i needed one, “this week”. i get scheduled. ask ONE question to the receptionist. get put on hold and then now its not necessary???? and the annoying thing too with this office is its just a ton of providers so i have never met this dr before either which kind of makes me nervous (I’ve had one bad experience w an md in this office back when i was pregnant with julia and it honestly was so bad that i still get scared every time i meet a new person in this office.). and i have to not only rehash my first birth history, again, but now the miscarriage too, and my [prior physical] trauma problems in case they have to examine me (which i fucking hope they dont.) and i have to question the whole u/s thing. i’m just so frustrated with how nothing makes sense at this office. like i had such a good experience with the midwife who was with me when we found out i lost the baby and the follow up with her to get my options/medication. and now i feel like we’re back to square one and being seen by someone who knows nothing. it feels like this happens every appointment. i just want to make sure things are ok with my body right now. find out whats the situation with my uterus. and find out when exactly its safe for us to try again. and i dont want freaking run around different answers on all this. i just want to feel like my medical team knows whats going on and that i’m actually getting appropriate, informed care. which i dont know if i am.

[kamal1011]

Accepting my diagnosis

Abt three months ago, i was floating at outpatient dept. just a normal day in OPD, my name was at labeling at K8. Finished my lunch, and continued my work. Had the feeling of something stuck at my throat. For normal ppl, they wouldn't think much. But knowing my mom had same problem, i knew this was thyroid issues. Ppl around me told me to not overthink, but its just deep down i know its my thyroid issues. No reason, i just knew.

So, i consulted this friend that i knew went through the same issue. She asked me to wait two weeks to see whether this feelings resolved or not. And i decided to wait. Told my parents abt this and their reaction was u r are just overthinking, maybe its just because of wearing mask, we also feel like that because of wearing mask, try few days without mask, the feeling will resolve, maybe its just sore throat, don't worry u eat this, eat that, pray to god, everything will disappear, you don’t know the power of god. Hmmm i do believe in god, but i pray to god that He help me to go through this with strength and courage.

The feeling in throat just became the new normal. i was getting used to it, so kinda forgotten abt this thing. Abt two weeks past. One day one of my friends said she wanna test for thyroid, and it was going to be a good chance for me to do as well, so i decided to do with her. For someone who is scared of needles and blood, its was really scary. But i felt that i had no choice since i have to make the thing in my throat disappear.

After two days, asked my friend to help me check my thyroid results. I was on leave on that day. i just woke up and msged my friend to ask the results. was getting ready to go down, i simply checked my phone, and there was a msg from my friend. Opened my WhatsApp and clicked on the image. that moment when i saw my TSH level my heart literally stopped. yup, i was scared.

Came down and told my parents abt it, as usual they blamed me for my condition. i was literally helpless. when u get to know that u are sick, but u got blamed for something which is not ur mistake. i immediately texted my cousin, MO in diff hosp. actually didnt ask her anything just showed her my results. The talk with her calmed me down. she asked me to get few blood tests and try to get referral letter to endocrine.

the next day i went to staff clinic. that's the only thing that came to my mind to do. Waited in front of the staff clinic for almost one hour. my anxiety came back. i was really nervous, till i could really feel my heart racing up.was the last person to see dr that day, and they finally called my name.

Entered the room, and the nurse scanned me, she was like" u got a fever", the she wanted to take my blood pressure and heart rate. as soon she saw my bp & hr, she alarmed the dr. very hard to make to dr believe that the results shown is not true. but ended up he asking me to take deep breaths and repeat the test a few times until my bp &hr shown in normal.

The check-up went pretty much as usual. he asked abt my symptoms and I showed him my blood test. he saw my throat and touched my neck to see the extent of swelling. he wrote me a referral letter to medical. after asking where was MOPC clinic, i walked of the room.

upon reaching there, i passed my referral letter to the staff nurse incharge. the waiting game continued. waited for another 1 hr, just for the nurse to give me one month later appt date and a few blood test forms.

informed my cousin abt this, and she was worried since she wsaid for my level of TSH need to start treatment immediately. she told me that she will get back to me soon.

later the next week, she msged me saying to meet a dr from mopc the next day itself. came back home then realized, how to meet dr without any other baseline blood test results. so brought my sis back to hosp, so she can run some test before i meet the dr.

the ride there was literally the scariest. i have night blindness, and rain literally start to pour like hell. very heavy rain. i still had to drive. was trying to go slow, but at the same time fast since my sis just got back from night shift and haven't sleep yet. at a bridge almost near my hosp, my car skided to the other lane due to the water level that start to rise up. my heart stopped. but i came back to my sense asap, and brought back my car to the right lane. and i drove back like nothing happened. i knew at that moment something bad is going to happen to me soon.

As soon we were done taking blood and my sis send the samples to lab, I drove back home. Emptied my mind although a lot of things were still there. That night I couldn’t sleep much since I was nervous. The next day, woke up, and thankfully I managed to take off for that day.

On the way to the hosp, I knew something was wrong with my car because of the incident yesterday. I thought I had punctured my tyre, so I don't dare to look at my car back when I reached so that my feelings is not disturbed. reached there pretty earlier so was hanging out with one of my friend  and then went to get my results printed.

Walked to the clinic slowly, knowing something scary is waiting for me. Asked the staff nurse abt the dr that I abt to meet, but they just say he might not be coming in on that day. I was kinda helpless but no choice, I literally sat there in front of the clinic with some hope he might pass by. After abt one hour, the staff nurse finally called my name and asked me to register. I get myself registered and passed the file back to the staff nurse.

Waited back again till the dr back from ward round. And finally, the staff nurse called me and I entered the dr’s room. To be honest, he was the sweetest dr that I have met. He first made me sit, started with asking abt my symptoms, did some physical exam on my neck and he finally took a piece of paper. He explained to me abt what is hypothyroidism. At that time, actually I spaced out. I wasn’t even listening properly to what he was saying. The reason, cos I thought this was all just a dream. I was just saying yes or no for everything he asked. He asked me to read about Hashimoto also. He handed me my prescription and I went out of the room. Did my antibody blood test that day after that.

The next few days, I was playing back all the questions that the dr asked. I know I wasn’t in my right state of mind at that time but after a few day I was clearing my head and I realised actually I had more symptoms that I actually thought I had.  

Days went by, and I got to know my transfer is soon. So I managed to change my appointment to one week earlier. Did my blood test and checked it. Was actually relieved that my results was much better compared to the other time.

The day of my second appointment came by. Met a dr, and I knew she wasn’t that experienced. I didn’t ask her much also since I don't think she knew much. She ordered another test as said by the earlier dr. she also asked me to continue my old dose.

One week passed, and I decide to ask my friend to check my antibody test. After abt one hour she reply with the result. Actually after looking at it, actually I my mind went blank. I wasn’t scared or sad , to be honest I had no feelings. Msged my sis to confirm my diagnosis and she confirmed it. Its autoimmune thyroiditis.

Cam back home, was thinking whether if I should inform my parents. At first I thought of not informing since I don't want to worry them. But later on, I just wanted to share since I was started to get scared myself. Yup, the conversation didn’t go as I thought it would but their reaction was expected. From starting to blame my choice of food, start to control what I should eat, asked me to not eat outside and my dad started abt yous know god can make any disease just disappear, and a lot of nonsense that made me regret my decision.

The conversation abt that stopped on that day and no one seemed to care or remember or asked me anything. Had a few close and best friends keep checking on me. Started to read more abt this, I thought reading more would make me worry less but actually made me feel worse.had this best friend who keep scolding me for overthinking, but seriously I cant stop.

Weekend came so binged watch a Korean drama so that I don't overthink. I followed my mum to tesco and I got myself some Kellog’s muesli. Came back, my dad saw it and he started. He first asked isn’t it high in sugar content? I was like, u no need to eat, I just bought so I and my sis can eat have them for breakfast. Then he said, actually for your condition u shouldn’t eat much sugar right? and the fight started. I tried my best to make them understand that food is not the cause or will make things worse. But they insist saying me always eat outside, don't eat oranges are the reason that I get autoimmune. The fight stopped when I gave up on explaining to them.

Currently just waiting for my blood test and my next appointment to clear up all my questions regarding my diagnosis.

[homeschoolbase]

I might start homeschooling my 1st grade son after the holiday break this year.

I might start homeschooling my 1st grade son after the holiday break this year.

Little backstory first: My son started K at our local public school last year and had a rough time, so we transferred him to an independent school by October (after only 2 months). The teacher kept calling me all the time saying he was being disruptive and she couldn't teach. She put him on "red" on her clip chart most days and/or sent him to the principal's office. It increased his anxiety, so then the counselor got involved and started seeing him and asked me if we had anything going on at home and I explained, "no, it's his teacher and school that is causing this". UGH.

He seemed much happier and the anxiety immediately decreased when we switched to the independent school. The K teacher at this new school had a lot of experience, was warm and friendly and accommodating, so she was a good fit for him. Well now this year, he's at that same independent school, but he's having some clashes with the 1st grade teacher. She's nice but stricter, and not as flexible as the other teacher, so now he's not looking forward to going to school every day and has been bringing comfort items like a stuffie and blanket to ride on the bus. Poor guy!

He's had 2 evals by psychologists, and the 1st one was with the public school district. She observed him at the end of preK and basically said he was gifted and will certainly need a curriculum to challenge him and engage his interests, but warned that because he was delayed in social skills, that he could have a tough time in school and suggested further evaluation. Well, the public school did not qualify him for special services because they said as long as their data shows he's learning "some", then he cannot be given access to special services.

In May at the end of K year, I saw a different psychologist and she said he was mildly on the autism spectrum. He's already been getting occupational and physical therapy over a year now because he was showing some physical deficits and it's only helping marginally. We're not 100% sure he actually is on the spectrum. A pragmatic language specialist said he communicates in ways that a child on the spectrum would not be able to do, so we're a little confused if his diagnosis is correct.

There's also some focus issues. He can focus GREAT if he's engaged and interested in the subject, and does not if he's not interested, which leads to the lack of cooperative behavior at school. He is an AMAZING reading listener. I pull out a book and that kid will sit and listen for an hour. I can ask him questions, and he will answer them correctly most of the time so I know he is comprehending too. I am reading books meant for 9-12 year olds, Harry Potter, Stink the Shrinking kid, A Child's Intro to Greek Mythology and others from this series, Bean & Ivy series, and he is reading books at a DRA of 25-30. I'm not forcing it, he just picks them up and reads. Teacher sends home a few books in the range of DRA 16-18 and he doesn't want to read them and says they are boring and he's already read them like 5 or 6 times. (I've mentioned this to her a few times).

So, now he's feeling disheartened by school this year and he and I both want to try homeschool. He's very excited about the idea of being able to choose areas to focus on. I told him I expect him to get some learning done and we aren't going to just play with toys all day, but that there would be more time if we finish up some work in the morning. I plan to do a combination of teaching him some traditional lessons from public school, then having a long reading time where he can read some, and I can read to him, then he can choose something to study of his interest.

The drawback is, I'm frankly not very social/outgoing. I've already scouted out a few homeschool groups in our area and we could join 1-2 times per week for field trips and play dates, but I know I won't be doing social groups every day. That would be too exhausting! He is doing boy scouts now, and that certainly gives him social outlet. I also thought about taking him out to get more physical activity, like swimming at the community center or going to a trampoline park to help address some of those physical delays. Another challenge at school, is the teacher and peers have a hard time getting him to cooperate in P.E. or the dance videos they do in class as a break. He just sits and watches. But, at home when me and little brother do stuff like that, he joins in about half the time.

Soooo, the tuition at his independent school was $16,000!! Imagine what I could do with some of those funds if we spent it on homeschool instead?? Also, my husband works at home, so I can even leave him at home if I have a dr's appt.

Are there any other potential issues I am overlooking with this possible homeschool experiment? At this point, I feel like we really should try it, after hearing constant negative feedback from school. They admit he's a sweet, smart boy, but the distractive behavior and not cooperating and following directions makes it hard for most teachers to deal with him. :-(

​

tl;dr: thinking of pulling my 1st grader out of school after Christmas break to try out homeschooling him. I already have a loose plan/idea in my mind of how we will tackle the learning. He's twice exceptional, very smart, but has some social and physical strength and coordination delays. I get complaints from teachers every single year (even in preK) that he doesn't follow directions and is disruptive in class. We don't have nearly the same level of problems at home, only minor and I usually can get him to do what I need him to do. Does he sound like a good homeschool candidate? We are in Arkansas, so we only need to file the intent to homeschool with the superintendent. No testing or certain curriculum required.

[tlcrescuepa]

New Post has been published on To Love a Canine Rescue

New Post has been published on https://tlcrescuepa.com/week-end-update-memo-to-mother-nature/

Week-End Update: Memo To Mother Nature

We’re pretty glad that Mother Nature spared us from snow yesterday since it meant our pack walk with our buddies at Buds went on as planned (and everybody had an awesome time)!

When our Kelly came to us we thought she was nearing the end of her pregnancy but quickly became aware something was amiss. Sadly we had to take her to our friends at VRC where we discovered the pregnancy was not meant to be and she needed an emergency hysterectomy. This sweet girl was a total champ through her whole ordeal and recovery, so we really happy to announce that it didn’t take her too long to find the perfect furever family for herself.

Also adopted this week were: Awesome, Felicity, Hammer, Harley, Latte, Lawson, Maryanne, Mr Needles, Nettie (now Athena), Nyrobi, the Professor, Sidney, Skipper, and the last of Mittens’ pups, Socks.

  #gallery-1 margin: auto; #gallery-1 .gallery-item float: left; margin-top: 10px; text-align: center; width: 33%; #gallery-1 img border: 2px solid #cfcfcf; #gallery-1 .gallery-caption margin-left: 0; /* see gallery_shortcode() in wp-includes/media.php */

Awesome

Felicity

Hammer

Harley

Latte

Lawson

Maryanne

Needles

Nettie now Athena

Nyrobi

Professor

Sidney

Skipper

Socks

Kelly

  We also have some pupdates to share with you:

  Macy

#gallery-2 margin: auto; #gallery-2 .gallery-item float: left; margin-top: 10px; text-align: center; width: 25%; #gallery-2 img border: 2px solid #cfcfcf; #gallery-2 .gallery-caption margin-left: 0; /* see gallery_shortcode() in wp-includes/media.php */

“So we recently bought beach house and decided to go down for a weekend. Macy loved the beach!”

  Speaking of Macy, we also received updates on/pics of  her pups!

  Ruckus FKA Donald (Macy’s pup)

#gallery-3 margin: auto; #gallery-3 .gallery-item float: left; margin-top: 10px; text-align: center; width: 25%; #gallery-3 img border: 2px solid #cfcfcf; #gallery-3 .gallery-caption margin-left: 0; /* see gallery_shortcode() in wp-includes/media.php */

“Hi!! I had a missed call from Erin last week checking on Ruckus and haven’t been able to connect with her so thought I shoot an email over.

We LOVE Ruckus (fmk as Donald). He is seriously the absolute best puppy! Training has gone great, he’s not a barker, fantastic on walks, crate trained during day and takes turns sleeping with kids at night. He is Mr. Personality and the the happiest puppy! Loves going to the kids baseball/softball games (I think he loves the attention he gets!). We couldn’t be happier with him. He’s a big boy…tall and long and hit the 70 lb mark this week. 

We found out several weeks ago too what his DNA is: German Shepherd, boxer, American bulldog, English bulldog, and American staffordshire terrier. 

We also see his Mom, Macy, a couple days a week now. They are great together! Would love to know how his siblings are doing and hoping they found wonderful homes too. ”

Keagan FKA Porky (Macy’s pup) & Eanna

Keegan FKA Porky and Eanna

“Just dropping by with a great pic of our two TLC pups.

Eanna (on the right adopted June 2014) is celebrating her 4th birthday today.

Keagan (AKA Porky…on the left…adopted Dec 2017) is being a great “little” brother although at 7 months old is over double her weight now at just shy of 65 lbs.”

     and some pics of  Daisy (with her handsome brother Iggy) and Charley FKA Petunia

#gallery-4 margin: auto; #gallery-4 .gallery-item float: left; margin-top: 10px; text-align: center; width: 20%; #gallery-4 img border: 2px solid #cfcfcf; #gallery-4 .gallery-caption margin-left: 0; /* see gallery_shortcode() in wp-includes/media.php */

Charley FKA Petunia

Charley FKA Petunia

Daisy (w/Iggy)

Daisy

Daisy (w/Iggy)

  Odin FKA Athos

“So far so good. He has been doing great with our other dog. He has only had a handful of accidents in the house and is taking to crate training very well. We named him Odin. He is very timid and skittish but we are working with him and socializing him to get him used to new things.”

  Luna FKA Barbie & Theo FKA Liam

“Luna and Theo were a great match and playing very well together.  She fits into our family perfectly and loves to snuggle and even try to lay with Theo, which ends up with them both wanting to play. It is so cute watching the two of them.”

  Delilah FKA Nora

“We have renamed our girl to Delilah, a mutual decision by all of our children. 

She had her first vet visit last week.   All looks good,  we are just awaiting test results, which came in today and she has hookworm and some yeast.  We immediately started her on meds and will re-test in 4 weeks.

Otherwise, she is doing fantastic and we all love her to pieces!”

  Editor’s note: one of the reasons we recommend our adopter’s take their new pup to their vet within 2 weeks of adoption. Even though we put dogs through a de-worming protocol, there are times they do need another round of de-worming

  Chloe & Louie

#gallery-5 margin: auto; #gallery-5 .gallery-item float: left; margin-top: 10px; text-align: center; width: 33%; #gallery-5 img border: 2px solid #cfcfcf; #gallery-5 .gallery-caption margin-left: 0; /* see gallery_shortcode() in wp-includes/media.php */

“We just wanted to update you on their great progress. It didn’t take long for them to become members of our family. They are very sweet, lovable, and affectionate. Even Chloe, who was very reserved initially, warmed up quickly, both to us and to her new canine brother Louie. She loves to play with him…on her terms. We believe that they know they have found their forever home. They are very protective of their family and have made friends with the neighborhood dogs. They love going on walks especially to the dog park. In July they will have their first vacation to the beach! Thank you for helping us find our new, little family members! We attached some pictures for you guys. “

  Chief FKA Lidge

#gallery-6 margin: auto; #gallery-6 .gallery-item float: left; margin-top: 10px; text-align: center; width: 33%; #gallery-6 img border: 2px solid #cfcfcf; #gallery-6 .gallery-caption margin-left: 0; /* see gallery_shortcode() in wp-includes/media.php */

“He is doing very well. He doesn’t like the cage very much though. We changed his name to chief. “

  Xany FKA Natalie

#gallery-7 margin: auto; #gallery-7 .gallery-item float: left; margin-top: 10px; text-align: center; width: 16%; #gallery-7 img border: 2px solid #cfcfcf; #gallery-7 .gallery-caption margin-left: 0; /* see gallery_shortcode() in wp-includes/media.php */

“Thanks so much for following up!  I’ve been putting off responding to this email because I wanted to get together all of the pictures we have of Natalie (there are SO many).  She’s settling in wonderfully — she is honestly the most well-behaved and calm puppy I have ever been around. 

We changed her name to Xany, and she’s already learned it quickly!  

Again, thanks so much to TLC as an organization for making this process so painless.  Everyone I interacted with was so kind and helpful.  Xany is such a perfect girl, she’s already changed our lives so much, and everyone that meets her just falls in love with her.  

She’s so well-loved & such a happy girl.  Attached are some pictures!”

  Bert Macklin FKA Bert

Bert Macklin

“We are very happy we were able to give Bert his forever home. We kept his name, just added a middle name, Bert Macklin. He is settling in well. He is now getting comfortable and is starting to act more and more like a puppy. He is not happy when he is in his crate. He has a vet appointment on Friday. “

  Harry

“Harry is so great and we couldn’t have asked for a better dog! He is very mellow and just loves attention. We plan to keep his name since he responds to it and is a bit older. 

Harry seems to be adjusting pretty well all things considered. m His foster family went away for the holiday right before we got him so he may be feeling a bit overwhelmed and not realizing this is his forever home! 

His vet appointment is on Monday and I’ll double check the microchip as well. In terms of training/Jeri – are we able to reach out with general questions or is that more for like setting up a training appt or attending a class? 

We’ll also share pictures of Harry soon!”

  Editor’s note: our trainers are available to our adopters for phone & email support, and adopters can feel free to contact them directly

   Campbell

Campbell

“Thank you for your follow up on Campbell.  We did keep his name Campbell since he seemed to recognize it and respond to it, plus, much like himself, we thought it was very cute. 😊  Campbell is doing really well.  He met Dr. Banks on Monday morning and aside from a little cold or respiratory infection, he is in perfect health.  Neither Jeff nor myself can get over how smart this little bundle of fur really is… we watch him figure out all kinds of things, both good and bad (he is a very curious puppy after all).  We have all been working with him to keep up his good manners and socialization… again, he is a very smart puppy.  As for our cat, Jason, the two have yet to really bond, but things definitely look promising as Jason has started not really caring where Campbell is in the house.  They have also (maybe by accident, maybe not) actually shared the bed… albeit on opposite sides of me, but I can’t complain about all the cuddles from my two fur babies and after only just under a week.  

We love Campbell completely and feel like he’s the perfect fit for our family.  He has more toys and love than he knows what to do with.  We are still figuring out this whole “why do I need to stay in a crate again” thing, but we’re getting the hang of it and it’s not so bad anymore… in fact, it’s actually pretty nice for taking naps in and hiding all our new toys.  We’ve made quite a few new friends, both human and of the fur variety and everyone seems to love us, so we can’t wait until my little furry brother arrives to join our pack in two weeks.  We will be sure to share some pictures.

We want to thank Campbell’s foster family(s) and TLC Rescue for taking such good care of him and for first rescuing him from the shelter.  Campbell sends his love and kisses as thanks as well.

PS – See photo for tired-out puppy in his natural habitat.”

  Zoe FKA Latte

#gallery-8 margin: auto; #gallery-8 .gallery-item float: left; margin-top: 10px; text-align: center; width: 25%; #gallery-8 img border: 2px solid #cfcfcf; #gallery-8 .gallery-caption margin-left: 0; /* see gallery_shortcode() in wp-includes/media.php */

“She is doing very good.  We renamed her Zoe.  She has her first appointment with the vet tomorrow afternoon.  Here are some pics of the new family member settling in.” 

  Frankie FKA Magnum (Penny’s pup – Magnum PI litter)

#gallery-9 margin: auto; #gallery-9 .gallery-item float: left; margin-top: 10px; text-align: center; width: 25%; #gallery-9 img border: 2px solid #cfcfcf; #gallery-9 .gallery-caption margin-left: 0; /* see gallery_shortcode() in wp-includes/media.php */

“Frankie’s been doing great! We are wrapping up our third obedience class series, and will begin CGC training next week! He’s been a delight, and has several close doggy friends he sees daily for play dates. His favorite acitivities include hiding my shoes and protecting our home from squirrels he sees outside the window. I don’t know how I got this far in life without him. :)”

  Louie (June FKA Ariel’s pup)

#gallery-10 margin: auto; #gallery-10 .gallery-item float: left; margin-top: 10px; text-align: center; width: 25%; #gallery-10 img border: 2px solid #cfcfcf; #gallery-10 .gallery-caption margin-left: 0; /* see gallery_shortcode() in wp-includes/media.php */

“Louie is doing great! Some pictures attached.”

    Oreo FKA Klay

“Everything has been wonderful with my new friend.  I have ended up naming him Oreo, and he has been an amazing companion, and is loved by my friends and family!  He has just turned one year old, and seems to now be full grown at a healthy 60 lbs.   Thank you and your organization for all the excellent work you do, adopting Oreo has been one of the best decisions in my life.  I have enclosed a few pictures of him in case you were curious how he ended up looking as a full grown dog. 

Thank you again for all your help, I really appreciate it!”

  Jagger FKA Jenner

#gallery-11 margin: auto; #gallery-11 .gallery-item float: left; margin-top: 10px; text-align: center; width: 20%; #gallery-11 img border: 2px solid #cfcfcf; #gallery-11 .gallery-caption margin-left: 0; /* see gallery_shortcode() in wp-includes/media.php */

“Thought I would give you an update on Jenner, who’s name is now Jagger.  First of all, we love him!  He’s such a total sweety! He plays with our other dog all the time, and we are so happy we added him to our family.  

I’ve attached some pictures of him in the snow, playing with our other dog Tyson, and also at our beach house he loves looking out the low window. Our older dog we just lost loved those windows too.  

I also wanted to let you know we did his DNA test and he has a crazy mix!  He is majority Husky, and then 10-20% each of these three breeds- Border Terrier (see this in his face), Bulldog (don’t see this at all), and the craziest- Nova Scotia Duck Tolling Retriever (??) the funniest thing is he doesn’t really bark normal, he tends to do a high pitched whine bark instead, which we learned is a trait of the Duck Tollers! They have a “scream”.  So, let me tell you when he sees a cat outside that window that scream comes out! 

Thank you for rescuing this sweetheart of a pup.  He just loves exploring the backyard, going on walks, going for rides and viewing the world. I can’t imagine him being in a shelter for so long.  This summer we’ll see how he likes hanging on the beach! He has some serious webbed feet so we’ll see if he likes water at all. 

Thank you for all the wonderful work you do! 

  PS Jagger thinks he’s a lap dog. :)”

  Wolfgang FKA Beethoven

Wolfgang FKA Beethoven

“On 4/6/2014 Wolfgang became a part of out family. He is more than we could have ever asked for. He introduced us to This great organization that we are now a part of. He truly changed our lives and we are forever grateful.”

[sundevilatthebeach]

Part 3 of my Psoriatic Journey, Thanksgiving 2010 to Summer 2017

So to Texas I went. I had in my mind that I would visit my parents and when things got bad enough, go to the hospital and die. Obviously, this is not how things worked out.

I have a number of family members who live in the Dallas Metroplex, beside my parents, I have a sister with two sons, and Uncle and Aunt and 3 cousins.

One cousin is a Rheumatolgist. My mother called him Sat; on Sunday he showed up with two shots of Humira. He wrote an Rx for an injectable Methotrexate (MTX) at 25ml, as well as an Rx for 10mg Prednisone and told my mother I needed to be taking oatmeal baths and following that up with cooling strips.he visited my parents home the next four weeks, each time coming with a shot of Humira. On the fourth week he brought enough for 6 weeks as he was headed out of town on vacation for Christmas.

In mid-December, he got me an appointment with Dr. Menter. Dr. Menter is a world renowned dermatologist who specializes in Psoriasis. He literally wrote the book on Psoriasis ( https://g.co/kgs/z783O5 ). Anyway, he added cyclosporine to my treatment, which he provided at no charge.

I continued to improve daily. By February I had insurance and went to Jacksonville to see my dermatologist, Dr. Robins. He wanted me to try Stelara. As an injectable administered by the doc office, issue of crappy drug coverage in my insurance would be minimized. The Humira/MTX/Prednisone with the cyclosporine were great in getting me off the ledge of danger that was Erythroderma, but I still had significant plaque Psoriasis.

The Stelara had no effect and after two treatments, Dr. Robins discontinued. I was still on MTX and Prednisone, and my cousin again began supplying me with Humira Needles. I was taking one injection (40mg/0.8ml was the prefilled pen used by my cousin) per week which was higher than the every other week traditionally followed for PsO.

During this time, Dr. Robins got Dr. Fleisher, a gastroenterologist, to have compassion on my situation and take me on as a patient in the Borland Groover Remicade Clinic (BGC). I discussed this with my cousin, he said that Remicade is the best possible treatment for my Psoriasis and that I should go for it. I do not remember what the cost was at that time. I know that my last treatment in January was billed at $15,500. My insurance had an 80/20 coinsurance. But Dr. Fleisher was going to wave the 20%!!!!!

I began the Remicade in late summer 2011. I went off the Humira, but continued MTX (now pills, 17.5mg-7 pills, once weekly) and the 10mg Prednisone.

I had a follow up appt with Dr. Fleisher in December. He took me off the Prednisone and lowered the MTX to 12.5mg. I was getting the treatment every 8 weeks. I saw Dr. Fleisher again the following December. In January 2013, I went on an HMO which would cover more of the cost, meaning BGC would no longer have to eat the 20%, but a lesser amount. I also began paying a $100 copay. Treatment was still every 8 weeks.

At some point, there was a review my account at BGC. It went before a board that includes Jack Borland. The waiver of the copay had not been properly authorized and they were unwilling to honor it. This meant that I now owed the BGC in the neighborhood of $14K.

They would continue treating me. I made payments of $200/month in non-treatment months and $100/month in months that I was paying the $100 copay.

In 2013 I developed an ulcer on the bottom of my left foot. I went to a doctor for over a year who seemed content to manage the ulcer. The relation to PsO is that I got an infection and missed a treatment in early 2013. I went without tx for 13. weeks. That is an important time frame. Btw 14-16 weeks, things downgrade significantly in my condition.

In 2014, I was notified by my insurance that my doctor, Dr. Secunda, was no longer participating in the plan. I was stuck seeing my doctor for cash that year. That was an eventful year (medically). I got a new foot doctor, Dr. Swain , DPM, who was a bit more aggressive in his treatment. He had a plan: at the onset of infection, he would cut out a piece of bone in my foot that was pressing against the ulcer. The removal of this bone would allow the ulcer to heal.

I got an infection in the foot in early fall. He operated on i within 2 weeks. By December the hole in my foot was mostly healed. I had missed a Remicade treatment and did not get one until week 15 sometime in early January. The PsO was covering 90% of my body.

But in January I got a new insurance plan (again) that covered Dr. Secunda. This plan also covered the Remicade with only a copay of $20. In 2016, that amount went to $40.

In 2015-16, I was back to 6 weeks clear, 4 weeks with symptoms, 6 weeks clear. In mid2013, my insurer, Coventry, was bought by Aetna. This was not known or relevant to me at the time. In late 2015, Aetna started sending introductory mailings about its ownership of Coventry. Still no impact on me. In Jul 2015, Aetna announced its intent to acquire Humana. In July 2016, the justice department filed suit to block this merger.

In November 2016, Donald Trump won the presidential election. Shortly after that Aetna notified me that they had cancelled the Coventry Plan. They told me to contact them regarding options. Because of timing, selection of a new plan was outside the annual enrollment window. I had until the end of Jan. But I had an appt for Remicade on Jan 9.

After consulting with Aetna, I selected an Aetna PPO. Tr representative told me it would cover Remicade the same way the Coventry plan did, except with $50 copay instead of $40.

I went to appt and paid $50 copay. Before next treatment, I came down with Shingles. Infection meant I would have to miss Remicade until resolved. I cancelled the March appt. Sometime in May, while still dealing with Shingles infection, I was reviewing my BCG bill. My balance had increased significantly. I called and was told drug was covered at 80/20. Meaning my portion was $2,024.xx. I reviewed my Aetna statement and it showed the same thing, you may pay $2,074.xx ($50 copay).

I called Aetna to dispute this, they said no this was plan and that was how covered. BGC had already indicated that they would not allow me to add to the balance.

So I also missed the May treatment. By week 15, things started going significantly down hill. Week 16 meant two missed treatments. I am now in week 21. From weeks 15-20 life was pure hell. Pain. Burning (skin on fire). Itch (psor- is Greek for itch) and cracking on movement. Also, I was dealing with a new problem: I had pustular Psoriasis on my back, starting in week 14. The pus was causing my shirt to be stuck to my back. The skin was growing into my shirt. When I would move in bed, this ripping was the most intense pain. Skin was being ripped from my back in strips, which then caused bleeding in addition to the pus.

In late week 20, my arms and legs began transition to erythroderma (PsE). In first few days week 21, my neck, chest, stomach and butt also transitioned to PsE. My face is mostly clearish except in eye area and shave areas. Ears are a blood mess. Scalp is still plaques. Pus on back has stopped. Back is mix of PsE and plaques. Plaques are mostly mid-lower where the pustular Psoriasis had been. Tops of feet still plaques. Minimal involvement in soles of feet and no involvement in palms. Nails also mostly intact (no pitting) with no detachment.

I do not want to go through weeks 14-19 ever again. I would rather die. Today. The pain is too much.

My Psoriatic journey

Oct1992 Psoriatic Arthritis with 3 Psoriasis plaques on scalp Jun1995 body mostly covered with Plaque Psoriasis Aug1998 Suicide attempt using Tylenol. Baker Acted- 1 night in mental facility. Aug-Dec1999 edema with weeping in shins; two lumps (bilateral) in chest that were lymphatic deformities (sinus histiocytosis). Completely covered (90%) in Psoriasis. Oct2001 went on SocSecDisability (Psoriasis) Dec2002 Graduated Arizona State University (BS-Psych) Mar2004- second suicide attempt, with vehicle. Major damage to body as a result. 10 weeks in hospital, 8 in coma, 6 weeks in rehab hospital Dec2007 Graduated Florida State University (MS-Risk Mgt & Ins) May2009- arrested DUI. 0.06BAC. Jun2010 Fired CPIC, lost insurance. “Last” Tx Remicade June 25,2010. Mar2011 went on SocSecDisability (Erythrodermic Psoriasis) Apr2011 Arrested worthless check to CPIC Jun2013 moved to Summer Pines Mar2014 began custodial care of Andrew Sept2014 foot surgery Oct2014 belly surgery Dec2016 Andrew graduates HS Jan2017 last Remicade tx Mar2017 Andrew turns 18 Mar2017 came down with Shingles May2017 Shingles cleared up Jun2017 Erythrodermic Psoriasis