chronic illness · Depression · healthcare · mental health · Primary Progressive MS

The depression is strong today

I really dislike sharing these type of emotions because I know we all go through it. Today it’s different. I can’t seem to find my happy today. Most days I can. I’m just now getting so much more frustrated with all the things I cannot do. I know I should focus on what I can do, but quite honestly, that list is very short. I’m getting angry that all it would take is for my insurance company to allow me the time in a Physical Therapy rehab center. Literally that’s it. But we know it’s all about money. Independence Blue Cross is taking my life from me to basically appease their rich shareholders. I can’t even blame my multiple sclerosis anymore. It is so much more than that.
I get people who ask me well then how do you go to the bathroom if you haven’t gotten out of your bed in three years. I have stomas I don’t need to get out of my bed. And I hate that so much.
Just can’t stop the tears today. I have so much life still ahead of me, but what I’m living now is not life it’s existence. I get so tired and mainly hurt when people question why I can’t just get in my wheelchair, so I have to explain that it’s because my hips and legs are so frog legged that when I go to sit and my hips turn, I cannot handle the pain. When I fell October 10, 2013 that is when my legs stopped working and my doctors basically did nothing to help me. At that point I was in my bed, 80% of the time. Then I had the wonderful surgeries for my stomas, which put me into a two year depression.
In 2018 I really thought my life was going to change when I was in that rehab center for 30 days. Then insurance kicked me out even though my doctors said I needed more time. Independence Blue Cross said it wasn’t medically necessary. When I got home, they barely gave me physical therapy because again it wasn’t medically necessary according to their doctors, who have never met me or seen me. When I was sent home my depression was really bad and that’s when everything went downhill.
Most of you know, and I’m not ashamed of it, that I tried to leave this earth three times. Again, trapped in the bed is not a life it’s just existence. I think the depression today is because I don’t see light at the end of the tunnel. I don’t feel I have the strength anymore to light it up myself.
But please don’t worry, it’s just a really really bad day today. I will get through it but I need to get it out because I don’t know maybe somehow someway there will be someone who will be able to help me.
I think that’s why it’s been really hard missing my daddy right now. Because he did have connections and he would’ve had me in a place getting the help I need by now.
And now, I will try and pull up my big girl panties and my boot straps, and any other metaphor for getting my ass together. For anyone that has read this, thank you and again, don’t worry about me. I am a fucking warrior, and I will pull through this!
Also, thank you for always supporting through the good and the bad. Again, I’ll get through this.
As always, sending out love, hugs, and all the mushy shit to anyone who may need it! 🖤

Have courage and be kind…

chronic illness · healthcare · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength

They don’t know who they’re dealing with.

It’s been a long time, again. I did get a TeleMed with UCLA, which went quite well. I am still trying to figure out where, and how to get the MRI he would like. Of course, it’s insurance issues. But that’s another blog. 😜

I had an appointment, 12/20/2023 with my primary care doctors. We got x-rays of my hip, I had another DEXA scan, urinalysis, and a few other issues. I did all these tests and on 01/17/2024, I had a TeleMed to go over those tests. My DEXA scan showed that my bones are still really bad. I asked if they were any better from the original DEXA scan in 2020, but they didn’t know because they did not have all my records. That’s number one… Then we went over the hip that had previously been broken at the hospital, because that hip has caused me pain since the surgery. They had no idea that my hip had been broken. That’s number two… Then they asked me why I was confined to a bed! That’s number three… I’m sorry, but I’ve been going to these doctors for a long time and they knew nothing about my MS and that I was bedbound. No original DEXA scan to compare this DEXA scan that had to be done in order to continue the medication and get refills. And they have my records. How did they not know about my hip? 😳

At the time I should’ve said something, but when you have to be transported in a gurney, for me, I have no confidence and I would rather just hide under the covers. Also, at the time no one was wearing masks. I was dumbfounded. This is a doctors office for fucks sake. And wouldn’t you know it, I got Covid for my very first time, thanks to that visit. I went to the hospital about three times in 2020 when Covid was in its hay day and never once did I get it. That’s when they were wearing masks and sanitizing and doing the things that need to be done especially if you are going to be around people with chronic illness. I’m sorry to go off track but that will be another blog. 🤭

Today, 01/22/2024, I got up my courage and called the doctors office and said that I needed to know what the difference is between my 2020 DEXA scan and my 2023 DEXA scan. I told them I need to know if I should stay on the medication, or if there’s a medication we can change. They had spoken to me about Prolia on my gurney visit, 12/20/2023, and I explained being bedbound I can’t be on that as you have to be weight-bearing. That’s when they asked why I was bedbound. Really!! Read my charts. I said I really needed to know what the comparison is since they told me that my bones are (still) really bad. I have to say the young lady on the phone was very good and professional. She called me back after speaking with the doctor, and told me that there really is no real change. I then asked what I should do about medication. Should I stay on the one I’m on, since it doesn’t seem to help, or change to something else. I guess the doctor didn’t have any other information so she’s going to have to get back to me again. I don’t understand why they said nothing about my medication and if I should keep going with it.

I am trying really hard to stay positive. Since being told on the 17th that my bones are (still) brittle I’ve been afraid to move too much. If I’m truly being honest, I’ve been afraid since 2020 regarding my osteoporosis and having such brittle bones. I have four back fractures just from sitting up and a broken hip just from being rolled over for a surgery. Since receiving the call, saying there’s really no change, I’m scared. I think now I’m going to be even more afraid to move at all.

Now that I got all that out… I will keep fighting. The only way any of this will change is if I get the help I need. Real help, not the help that the Independence Blue Cross doctors think I should have or not have. I need to be somewhere, such as an in-house physical therapy rehab, so there’s people there that can help me and that will understand that we need to be careful because of my bones. I know it will never happen because my insurance will not pay for it, and my doctors sure as hell won’t fight for me. It will probably take 2 to 3 months to be able to get back in my sling to be able to transfer to my wheelchair. As we all know from previous blogs, that’s not gonna happen. Now I will have to figure out how to do this on my own. I truly believe where there’s a will there’s a way and I will not stop trying and fighting for myself. Today, is not a good day, but it is not a bad life. Always remember, hold on!

Remember, have courage and be kind! 🖤

Ramblings

Be the Lighthouse…

Remember that in your journey, someone may be looking to you for strength. So keep holding on and keep fighting. 🖤

* I know it’s been a while. I’m working through a lot of things. I’m still fighting and I’m still working towards getting back in that sling to get in my chair. I finally have some help. Not from insurance, as we know how they feel. My help is from my daughter’s amazing boyfriend. Keep those fingers crossed for me and send prayers, blessings, thoughts, juju, whatever you do. Thank you!🙏

healthcare · mental health

Happy Freaking Holidays!

Independence Blue Cross has decided that it wasn’t an emergency when I needed the ambulance for my attempt on my life as well as the ambulance ride from the hospital after my surgeries to the nursing home. I guess I should’ve hooked up my bed to my husbands car and he could’ve rolled me over. Then I got an explanation of benefits saying they’re not paying for anything from my two surgeries and my hospital stay. I may be billed for $168,000 +. It gets better, I got my first bill for my hip surgery. But wait… there’s more, the ambulance company is sending me to collections because I haven’t paid for those two ambulance rides. 😳 I know that all of these issues are because of pre-authorizations and pre-certifications that were not done properly. I’m trying not to stress over this too much as I know it will all be taken care of at some point. Thankfully my deductible’s have all been met so I have no worries there. It’s just not right that we have to jump through these hoops to get the care we need. As we know sometimes jumping through the hoops doesn’t work.  I mean, I jumped through 1 million hoops and they still denied me the life-saving care of acute rehab. That type of facility is the only way I will ever be able to get out of this bed. I am not giving up. In fact, I’m just getting started.

I’m sorry I have been absent for a bit. It’s just become so overwhelming dealing with Independence Blue Cross. 

I’m a little late, but… I hope everyone had a wonderful holiday and I pray that 2021 is kinder to us all.🖤



Anger · Health · healthcare · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Strength

And here we go again… Part 2

You’re gonna love this one… I just received an explanation of benefits from Independence Blue Cross stating that they are not fully covering the ambulance ride from the hospital to the rehab center after my hip surgery. I guess I should’ve just hooked my bed up to a car and rolled over that way. Ummmm idiots, I have no choice as to who the case manager at the hospital decides to use for transport.

The best part, my husband told the caseworker not to use American medical response, and she did anyways. 😳

I also received a second explanation of benefits in regards to my hip surgery. Again, I should’ve pre-certified breaking my hip first before I got the surgery. Logically, I understand the concept of precertification, but not in this case. So, we should’ve waited a couple of days before doing the surgery as I was lying there with a broken hip? What exactly am I supposed to do about this? They need to take it up with the fucking hospital and not me.

Thank you to those sending me your horror stories dealing with Independence Blue Cross/Anthem Blue Cross, etc. I’m so sorry you have to deal with this as well. Trust me, we will be heard!

Yup, sharing this one again!
Anger · Fear · Health · healthcare · HELL · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Quotes · Strength

And here we go again…

Oh Independence Blue Cross… You’re just disgusting! Seriously how do the people that work there sleep at night knowing what they’re doing to people on the other end. They are now telling me that I may be billed $5670.09 for my hip surgery because it was not pre-certified. So I guess I should’ve called them a couple days before my hip was broken to let them know that my hip was going to break. 😳 I know it’s not as simple as that, but come the fuck on! I seriously feel like they have my name on a list and it says, fuck with her so she goes crazy and dies. 😈

And contrary to what HR at my husbands work said, they only offer Independence Blue Cross and Kaiser, NOT United healthcare. And Kaiser doesn’t have an MS specialist so I am stuck with Independence Blue Cross. I will be looking into Medicare part B. We can’t really afford it, but I’ve got to do some thing.

I’m still trying to figure out why Comcast benefits called me directly. I think I’m going to call them back again and find out why. 🤔

I also had to send in an appeal for the ambulance ride in May after my suicide attempt. 😪 It’s really disgusting all the hoops you have to jump through when you have a chronic illness. Money is more important than human life. It doesn’t pay to be sick.

Health · healthcare · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

The Physical Therapy blues…

I won’t get into any political things here… but the votes are L.E.G.A.L. and President Elect Biden and Vice President Elect Harris ARE our next presidential team! #DealWithIt

Now onto Physical Therapy… Finally after a bunch of fuck ups; getting the nurse here and getting the physical therapy people here, I got a total of three visits. One visit was the nurse signing me in. The next two visits were physical therapy and being signed out. So a whopping two physical therapy visits for a broken hip! I am truly at a loss with Independence Blue Cross. They are the most despicable and disgusting insurance company out there. The worst part is we’re stuck with them through my husband’s work. We can’t do Kaiser because they don’t have multiple sclerosis specialists where I am. You would think such a big company that my husband works for would offer better choices for health insurance. In the end, I think they all work together.

Disgustingly True

Like I always say, they know not who they’re dealing with.

My tide is turning!
Health · healthcare · Medical · mental health · Multiple Sclerosis · PAIN · Primary Progressive MS

Living the Crazy Train Life!

Hello… Life has been crazy since September 14. I was in the Antelope Valley Hospital from September 14 until September 25 when I was transferred to the Antelope Valley Care Center for recuperation. It was to be for some physical therapy and taking care of my surgery site from the broken hip. I had a total of 23 staples by my left hip and one of those staples by my left knee. I still haven’t really looked at the area as I’m still a bit freaked out about the whole broken hip thing. Insurance gave me a whopping 13 days for physical therapy and rehab. 🙄

Thankfully, on October 8, 2020, I was able to get back home. Both of my feet and ankles were very swollen. It was really cool as when I got home we literally watched my feet go back to their normal size. It’s possibly because the beds in those places are not comfortable whatsoever. The other issue is those beds are made for people under 5’9″. Being 6′ tall, it does not bode well for my circulation. Literally the minute I adjusted myself into my bed, the swelling just magically disappeared. There is still a tad bit of swelling on top of both feet, but very mild.

I am still having some pain in my left hip and I am very nervous to move too much at this point, as the doctor explained that my bones have severe osteoporosis. When they did the hip surgery they obviously moved my leg into a proper position. So now my left leg is much straighter and doesn’t flop to the side as much anymore. The problem is my hip is fighting to go and drop again. So we have put a pillow under that knee to keep it as straight as possible. I’m not sure why they don’t have some sort of braces for me. Although the way my doctors have let me down in the past, I guess I know why. I am going to be getting some physical therapy at home.

The best part about coming home was getting my bed bath and my hair shampooed in my bucket. Oh my gosh getting almost 4 weeks of hospital and nursing home nastiness off of me, was amazing!

This was me, above, in the nursing home. Look how green I look. Okay, okay, it actually is the baby Yoda filter on Instagram. Seriously though, I did feel green a lot of the time I was there. 😏

This picture, above, is after I got home and had my amazing bed bath and hair shampooed! It was Joyous!

I’m thankful to be home, and I’m feeling pretty good. I was a good girl today and got all of my follow up doctors appointment scheduled for the next couple of weeks. They will be done by video call, so that’s a plus. I am hoping to get on a bone medication and they also found a blood clot so I’m hoping to get the blood thinner prescribed to me as well. I am going to keep some hope alive that now that we know more but we’re dealing with, that I will finally start being able to get help. It could happen…

Health · PAIN · Primary Progressive MS · Quotes · Ramblings · Strength

Oh the pain… the pain!

I had my FaceTime neurologist appointment and PT yesterday. Both went well. But… I am paying for the PT today. 😳

I so hope this is true for me. We actually got my right leg into a 90° angle. That was crazy. My left side, not so much. Today Roger (hubby) rolled blankets to keep my knees and legs a little more normal. It hurts quite a bit, but no pain no gain! Thank the universe for cannabis. 😏

Stretching everything is going to be a painful process, but the outcome will be phenomenal! Now here is the shitty part… No more visits per Independence Blue Cross. 🙄 I have to call Monday and get the pain management doctor to call in more visits. WTF!!! My concern is all the work we have accomplished last week will fade away waiting for Insurance to allow me more visits. I really don’t understand how they have the right to run my healthcare. It’s mind boggling. The worst part is that it will start all over. What that means is, I will have to have an admission visit again, then an evaluation visit again, and then the PT visits start. What a fucking racket. All the while people like me are screwed. I just keep telling myself to keep breathing. This will work out, we will find a way. Sadly this just proves to me why people do give up. We have to jump through so many hoops, it weakens our soul.

^^^ I say this, I just wish I could truly believe it.

Have courage and be kind.