The Long Road to Recovery

     A lot has happened since I last posted. This includes 2 more hospital stays and I don't even know how many trips to the ER. I was taken back to the ER Christmas night because my legs were so swollen and pale, I mean I'm pale to begin with but they were ghost white. Turns out my body was rejecting the blood thinner that they sent me home with and I got a blood clot in my right leg, I was admitted for 48hrs and put back onto the original blood thinner I was on so I now have to give myself a shot twice a day. 

    The third hospital stay I kept off of Facebook because I didn't want to freak out my friends and family. I ended up calling 911 and being taken to the ER by ambulance. because hubby was at work and I was home alone and I just felt wrong. I was dizzy, both arms and my chest were tingling/burning. We don't know what caused it but I was admitted again for about 48hrs to keep an eye on me. This was January 5th that that happened. Since then I have had a few more ER visits because of my heart freaking me out because it would just randomly start to beat fast and harder then normal. 1 heart monitor and cardiologist appointment later my heart is totally fine and is probably just working a little harder at some points because of the clots and stress. After the appointment with the cardiologist my heart has calmed down which he said it most likely would because I now know for sure that its ok so I'm not stressing over it as well. 

    Next week I go to the hematologist to see if I have any unknown blood diseases/problems. Which means probably more blood draws and scans. It will be interesting to see if I do in fact have a problem that we just didn't know I had until now. 

    Last week I had yet another trip to the ER due to being dizzy and my heart acting up at the same time. SO I got yet another CT scan this time of my head and my first ever MRI again of my head to make sure I didn't have any bleeds and or had a stroke and what not all came back clear. But mom came up with an idea that I am now in the process of seeing if I have it. What is it? its called Meniere's Disease and all it is is an inner ear disorder that causes vertigo attacks. It's not deadly or anything it just basically will randomly make me dizzy for a bit then goes away. So I need to get a hearing test and thankfully since I had the CT scan and MRI my ENT can just pull those and look at them instead of making me go through them again. So if you are keeping tract that would be 3 ear problems if I do have it. I also have otosclerosis and estuation tube disfunction  why not go for the trifecta. 

    To say I'm sick of seeing doctors in an understatement but I know I have to so I go cause I know its important. I have also seen my main doctor last week which was a good visit as she was happy to see that I'm doing better then what I was the first time she saw me. She also got me a temp handicap placer to help me with my walking and stuff through the rest of winter. She's pretty sure my blood clots are COVID related so I told her how we thought I had it back in 2019 cause all my symptoms matched so I have to bring that up at my appointment next week with the hematologist. 

    I did go see my OBGYN because I can no longer have any hormonal birth control. We are trying some pills that will make me have a period every 2 months, no hormones in the pills. if those don't work than she will put me into a medically induced menopause which will require me to see her once a month for a shot for a while. Just what I need yet another shot. Here's hoping the pills work.

    Mentally I'm doing ok, I'm not going to lie, it's tough not being able to do everything I want to do and be independent like I once was. You would think having people dote over you and help you all the time would be great, it was for about 2 days and now it's just like just let me do it!! It's frustrating not being able to do stuff or go at the speed that I want to go at. I know everyone who is helping me and getting on me to take it easy is just watching out for me and cares about me and I do truly appreciate it and love them for it but I'm so fiercely independent and now I can't be at the moment. I also know I am truly lucky and very much loved by a lot of people and that feeling, that knowing that they all care is amazing. I'm truly blessed with amazing friends. I know that some of them will probably read this so thank you for helping me, I love you all!! 

I have had some small victories as well. Saturday I was able to get a haircut and then I even went grocery shopping! Mind you I was walking slower than normal in the store but I was able to do it! The other victory was back in January when the swelling finally went down and I was able to wear my shoes again. Each improvement is exciting to me, it means I'm getting closer to back to normal. 

I Almost Died

 Tuesday December 15th was just a normal day for me, or so I thought. I woke up and got hubby off to work and proceeded to the computer to watch some videos, check Facebook you know the usual stuff. I was killing time till my Tellehealth appointment with my ENT because I had yet another sinus infection. Right before my appointment I went to the bathroom and realized I was a little short of breath but thought nothing off it as I always get that way with sinus infections. My appointment happens I make mention of the shortness of breath to the doctor and he also doesn't seem to worried about it as it happens to me every sinus infection I get meds sent to the pharmacy and continue on about my day. I started a new knitting project while sitting at the desk watching Netflix feeling fine just congested from the sinus infection. Hubby comes home from work we talk nothing out of the normal and THEN I decided to walk from the Computer desk to our couch which is all of maybe 3 feet apart to sit down and knit, that's where it all went wrong.

I sit down on the couch and I feel like an asthmatic who ran the Boston Marathon I can't catch my breath at all, my chest is hurting and burning, I look over to my husband and ask him to get my inhaler so I can try and get this shit under control it did nothing! didn't touch it at all so my next move while still breathing really hard is calling my mom up, she's a retired nurse and my go to for medical advice. She tells me to calm down, take nice deep breaths and it isn't working so she suggests going and sitting in the bathroom with the shower running and sitting in steam for a few to see if it helps and to call her back after I'm done. I go sit in the bathroom with steam and its not helping in fact I have now thrown up a little so back out I go to the couch still gasping for air. At this point I look at my husband and tell him to call mom cause I cant talk very well. She tells us that if I can't get this under control then we need to decided if I go to the ER or not. We hang up with her look at each other and talk for a few seconds and decide to go to the ER. 

It takes me a good 5-10 minutes to walk to our truck and then off to the ER we go. When we get there hubby goes and gets a wheelchair for me and wheels me in and has to speak for me, they rush me back to do an EKG on me to make sure I'm not actively having an heart attack. I'm not but they can see that I'm having problems breathing and whisk me off to the back to be taken care of. I have so many people around me trying to help me, I don't even remember how I got out of my shirt and into the hospital gown but it happens, I get COVID tested, somewhere in there they start an IV, I get inhaler treatments, my blood pressure is through the roof my pulse is through the roof and no matter how calm I am I can't breathe. I get an ultrasound of my heart and then a ct scan and then another ultrasound of my heart and one of my legs. They have taken blood from me giving me meds and all I can do is lay on that gurney and try not to cry because my husband can't be with me because of COVID. I'm then told I will be admitted to the hospital for at least 72 hours and that I have blood clots on both sides of my lungs and one of them is massive and pressing on my heart. They start me on blood thinners while in the ER waiting for a room to open up for me in the PCU. 

I spent the night in the ER and then was finally admitted up to PCU in the morning. I am hardly eating anything because I'm nauseas and everything takes a lot of effort. I get winded just walking the very short distance to the bathroom with the help of my nurses. I'm given anxiety meds and anti nausea meds. 

Friday December 18th it's 4am and they are doing their rounds of getting vitals and drawing blood and a nurse or a Tech comes in asking me that before I lay back down to let them weigh me so I say ok lets do this. She goes and gets the scale, I stand up every thing is fine, I step on the scale everything is still fine, then I sit on the edge of the bed to catch my breath before getting back into and the room starts to spin on me. There are a bunch of nurses checking on my roommate and I very politely go "Excuse me I don't mean to interrupt but the room is spinning." and then I passed out. The next thing I know I'm laying flat on my back at an angle in the bed and a nurse is telling me to wake up. I come to and am looking up at at least 5 faces looking down at me. It turns out the Tech that weighed me stayed right in front of me and when I passed out I pitched forward and was going to fall off the bed and she shoved me back onto the bed. I'm put on bedrest, I can't leave the bed at all and an xray is ordered. That was the most painful xray I have ever had done, I couldn't roll myself from side to side so they had to do it for me and I almost puked on the floor and was in tears. 

My Doctor comes in and checks on me and then later that evening comes back to talk to me and tell me that he is going to move me into the ICU for 24 hrs as I need to get a does of meds to help break up the blood clots as I'm not going into obstructive shock. I have him talk to my mom and she agrees that it's the best thing for me so I agree to go. I'm scared and alone and all I can think about is telling 2 of my friends to please keep an eye on my husband as I was about to tell him the news of me going into the ICU for 24hrs and I wanted to make sure he was ok. 

Friday night to Saturday night I spend my time in the ICU and start feeling better, the meds worked! I still get a little winded walking to the bathroom but it was nothing like before. My apatite comes back and I am readmitted to the PCU. I'm there until Monday night when I am finally released to come home, which in itself is a whole other story for a different time.

I'm on blood thinners for at least 6 months, so I now have to be careful, I can lo longer use my razor and have to use an electric one, I can't fall or hit my head, and I have to be careful because I will now bruise super easy. I also need to continue losing weight. But I'm ok with all of this, why? because I almost died!! It's a real eye opener. I will now have many doctors appointments in my future for awhile I do believe. 

OH yeah and before I forget I suppose I should tell you what caused me to get said blood clots, it was my birth control that I was put on to help with my PCOS. I am no longer allowed to take any hormonal birth control. I never thought in a million years that deciding to finally take care of myself and figure out what was wrong with me was going to damn near kill me. I was only on the pills for just shy of 2 months. But there it is, there is the story of how I almost died. I am very lucky and grateful to be sitting here today a week later writing this down. I also had an amazing outpouring of love and prayers from family and friends and complete strangers helping me get through this and to them I am forever grateful. 

PCOS Journey (warning TMI)

 Today I'm going to talk about my PCOS (Polycystic Ovary Syndrome) journey. I have touched on in in a few previous posts but I'm going to go into what I'm doing about it now and some of the things that aren't really talked about that happen when you have it. First of all there isn't a lot really known about it, you can treat it but there isn't a cure and it isn't understood what causes it, it could be a combination of genetics and environmental factors. It's a hormonal disorder and can cause acne and facial hair, I have the facial hair and I don't really have the acne problem. PCOS is also very common there is about 200,000+ cases of it diagnosed a year. Yes you have to be diagnosed with it and honestly its not that hard to diagnose at all, it just requires an ultrasound and some lab work. I of course don't have all the signs of PCOS as I don't have the cysts on the ovaries. but not every woman gets every symptom. 

Here is a list of my symptoms:

Facial hair which I am treating with a medicine and am seeing results

skipping periods for months at a time

Heavy bleeding when I do have a period

Over weight (skinny girls can have it too)

mine is also insulin resistant which plays in to my weight

I had a 2 choices for treatment which were, go on birth control, which will cause me to have a period every month as long as I'm on it, or take a medication once every 3 months if I didn't have a period on my own that causes me to have one but it would be harder on my body because my period would be heavy and longer than the average 5-7 days that most women's are. Which technically mine already is as when I do have one it lasts from 9-14 days. Or if it's this last January damn near a month long. The second option also costs more money, where as birth control is free with our insurance. Plus the longer I'm on birth control the more control I have over my period it can get to the point of only being a couple of days and normal and not as heavy as it has been all year. Needless to say I went with the birth control option, it will be easier on my body once it gets used to it. My doctor did warn me that my first few periods would be wonky/off and boy was she right. 

I've been on birth control for 1 month, I just started my second month on Friday which means I've had my first period while on it. Mind you it didn't last as long as January, this one was only 13 days, I'm tracking them on my phone to see if there is improvements and what not. BUT it was SUPER HEAVY!! I went through a 2 month supply of over night pads in 13 days!! Yes you heard right a 2 month supply of the pads that cover you from your taco to your ass in 13 days! That's a lot of pads! 

No one talks about that, that your period is just HORRID, I didn't want to laugh, sneeze or even stand up cause that could cause me to throw period clots yes again sorry for the TMI but it's a part of PCOS. What causes them is the fact that I don't bleed so it gets thick and then when I do decide to bleed it sluffs off and because its been more than a month its thick and well a clot. Heck just shifting in my sleep could cause one to happen, Hopefully the birth control will help with that as well.  I'm hoping that December's period is better then this month but we will have to wait and see.

So for now and the foreseeable future I'm on  6 different meds taken either morning or night. I have a reminder on my phone for the nighttime meds because if I don't have it I forget to take them. Not all of the meds are for the PCOS as you know from earlier posts I have a few different medical problems.  I hate having to be reliant on meds but I will do it because I know they are helping me.

Sickly Zebra Unicorn

I have talked about my health many times on here... Since December I have had one heck of a time staying healthy. I’ve been plagued with one illness after another with maybe a week or a few in between them if lucky. I have made it my quest this year to figure out why the heck this year has been so bad for me, so far I haven’t got any answers and in some aspects have even more questions. This summer alone I’ve had a 2 sinus infections 1 ear infections and strep throat and that was in a 3 month stretch. Needless to say I’m frustrated and feeling a little helpless about it.  I’m trying everything I can thank of to boost my immune system and so far I really don’t see a difference.

My mom while talking to a friend last month said something about me and it was the first time I had ever heard her call me that and it shook me to my core. Don’t get me wrong it was nothing bad but I just had never really thought of myself that way and now I can’t help but think it.  She said “ you know she has always been sickly” I mean she isn’t wrong at all, I’m constantly sick with something it seems. I just never  thought of me as sickly, when I think of someone being sickly I think of people with worse problems then me but I guess I fall into that category. I know I am considered high risk for COVID-19 even though we are pretty dang sure I had it back in December. Speaking of that, when I was recovering from my “unknown upper respiratory infection” I was talking to my mom One day and I said something along the lines of I was just tired, tired of being sick all the time, tired of fighting it. Mom said it was the first time she had ever heard me sound just utterly defeated and that I sounded like I had given up.  Not going to lie I had pretty much given up thinking I was ever going to get better. Quarantine was super hard for me mentally too, I had been basically in self quarantine since December and then in March when I was finally better we had to quarantine to flatten the curve of COVID-19. It was extremely hard on me not being able to see my friends for months on end, 

I went to see an endocrinologist last week to see about having Cushings and according to him I don’t. Within 5 minutes of walking into the exam room and just looking at me he said I had PCOS and that was before he ever laid a finger on me. It felt like because I wasn’t diabetic that he didn’t want to treat me. He just kept going on about losing weight and the different ways I can go about doing it. Another reason I was sent is because my testosterone levels had increased since my last blood test and every time I tried to bring that up he talked over me about losing weight. When he asked if I had any questions I finally for like the 5th time brought up my levels and how do I bring them down and shocker his answer was lose weight. I left feeling like I had just wasted an hour of my time and slightly more confused as to why my OBGYN sent me there in the first place. I have an appointment with her on Oct 14th to go over some questions I have about it and to try for the 3rd time to get my pap done... so on that front I’m kinda on a standstill till I see her again. 

Still on the struggle buss about being sickly and accepting that I will always be on meds to help try and control my sinus and ear problems. I’m on 3 different allergy meds to help keep my ears and sinuses behaving. I have Eustachian tube dysfunction and otosclerosis in my left ear. Yep I’m a bundle of fun and damn near every time my ears act up I end up on steroids because my uvula decides to swell up and makes it so its hard to breathe. OH yeah and I have been told by doctors that I can be put on a nebulizer at home because when I get really congested and having problems breathing my O2 sats go down to low which is why I tend to randomly pass out and sleep for 30min-1hr at a time. My ENT calls me an enigma and I just have to laugh, doctors are told to not look for the zebra or the unicorn when trying to find out what’s wrong with someone and here I come, I am the zebra unicorn!!

Period Talk (you've been warned)

When I was about oh probably 16 I went to an OBGYN because my periods were irregular I would go months with out having one then have one and go months again. Mind you I was overweight as a teen, heck I'm still overweight and yes I'm pretty sure that plays a part in it and I'm working on that more later. I also sadly have an issue with some facial hair, I fucking hate it, it annoys me and yes I shave it so I don't have to deal with it. Anyways, it was said that I more than likely had PCOS which I was showing signs of because of the hair and irregular periods and that there were ways of making me regular which was birth control.. I went home and we did try the birth control once and it worked I did in fact have a period that month.  But nothing ever came of it and we just assumed I had PCOS. 

Years go by and I have both gained and lost and gained and lost some more weight, still overweight but suddenly my periods become more regular which also can happen with PCOS, it just means that you can miss and you never know when that will happen. I don't think  anything of it and I'm now married and know that getting pregnant is difficult to do with PCOS. life goes on as normal I skip periods some months and then I will go long stretches of being regular on time every month BAM here I go Aunt Flo is visiting. 

Then this January hit and omg period from HELL, I mean worse one ever!!!! I started on Dec 31st and didn't stop till Jan 17th! and it wasn't light it was heavy as fuck (sorry for the TMI) SO off to my general practitioner she orders an ultrasound and blood work all which come back basically normal and then recommends me to an OBGYN that can help me better. SO I go and she wants to get more blood work done looking at different things and looks at my ultrasound and guess what? We were wrong turns out I don't have PCOS. So now I'm wondering if my abnormal periods are just cause I am overweight. also I'm pre diabetic so I got put on meds to help with that and am trying to lose more weight.

BUT WAIT THERE'S MORE, it turns out that I might have Cushing's Syndrome which is treatable but could help explain the weight problems and hair problems well that and the fact that I have more testosterone then I should being produced. thank you blood work. So they want me to go see an endocrinologist, so I will look into that here in a week or so.  

Friendship

I've been sitting here thinking about all my friends. My friend group is small but I wouldn't change it at all, I have some great people in my life and they all mean something different to me. There are some that I know I can tell them anything at all no matter what it is and they won't judge me for it. I have friends whom I know I can go to with a problem or a fear and they will listen and help me through it. There are even the friends that I can totally just act 12 with and be totally silly. And yes some of these friends fit in each group that I just listed. I don't really have a best friend cause how could I choose just one? They all mean the world to me and are the best friend I need at that time when I am hanging with them. I love them all. It doesn't matter how long I've known them Some I've known for over 20 years others going on 2 years and anywhere in between. Heck some of them I have never met in person.

I'm fiercely loyal and protective of my friends, don't mess with them and if you hurt them so help you god. I also tell them if you need me for any reason no matter what time of the day it is, go ahead and call or text me I will answer and not be mad about it. I will help them to the best of my abilities and if they need me to show up, I show up.

The flip side of this is if you do me wrong for whatever reason best be prepared for me to burn that bridge and not want to repair it. I can hold a grudge, I don't want to but I will don't burn me cause you might not like what happens. Don't force me to choose between you and another friend cause that is a guarantee that you will lose and I will pick the other friend. I'm kinda going through this at the moment and it sucks. I feel like I'm being forced to choose between two people because of one of them and as much as I want to be friends with both I'm taking a step back from the one to see if they can get their act together and be the person I know that they can be, if that doesn't happen well then I will fully walk away from them as much as it hurts me to admit that, I have to do what is best for me and I don't need that negativity/drama in my life.

there is a poem I ran across many years ago that just spoke to me and I will post a picture of it here. it perfectly describes me for the most part.

brain stew

It's 10pm and I'm the only one awake here, hubby has to go to work at 2:30am to do inventory for work. I have always had problems with him working nights, I never sleep well. It's not that I can't be alone cause I totally can be, it's the fact that he isn't in bed snoring next to me so something is just missing ya know? I have grown accustomed to him being there so when he's not it throws me off completely. Plus I will go to sleep here shortly only to have to wake up at 1:30 to make sure he is up and ready to go, then it will take me at least an hour if not longer to fall back asleep after he leaves. I'm thankful he doesn't have to do this more than twice a year now, it used to be every 3 months but work changed that.

I'm struggling with my weight loss journey, I was doing really well then faltered and am struggling to get back on track with it. A lot of that is that I'm home all day at the moment due to wanting to make sure I am 100% healthy and ready to go back out in the public full force. I will force myself out of the house after Spring Break for schools up here happens which is the second week of March. I know right now that I could totally go out and be fine. Rationally I know this, but I'm scared to fully take that leap of faith and do it. I was SO sick from mid-November till the end of January. I have never been sick that bad/long before. I honestly thought in December that I was going to end up admitted to the hospital for Christmas if I didn't get better or got worse. So, for now, I'm home and bored. When I get bored I eat. I'm trying so hard to get back on track but just keep failing. But every day is a new day and a fresh start, one of these days it will stick right? I know it will I just gotta be a little more determined and not sabotage myself like I have been. Don't judge me, you can't say anything that I haven't already said to myself, I'll get there cause I know I can, I just have to get over this hurdle of being afraid to get sick again.

That's all for now, it's getting late and I need to get at least a little sleep before I have to wake up and send hubby off to work. Thanks for listening, even though I don't know if anyone is actually reading this but me.