Category: Ramblings

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

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

Tracy5 Comments

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…

Tracy4 Comments

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!🙏

Ramblings

I know, I know… A really long time no see!

Tracy8 Comments
So very tired.

Wow it’s been a little over all year. Crazy how time just catches up with you. In that time I’ve had five more surgeries dealing with kidney stones and having nephrostomys placed. This last one has been probably the hardest. It won’t be coming out until November 23, so I’m a little unhappy about that. But what are you gonna do?! I had some breathing problems which was kind of scary as that’s kind of new to me. But I’m getting by.

I am the phoenix!

I do have some good news, after three years I got into my sling and into my shower chair and had a real shower! Antonette, my physical therapy angel, decided it wasn’t about moving the legs right now it’s about stretching them out. My frozen knees now bend again as do my hips. Unfortunately when I did start sitting up straight, the kidney stones did what kidney stones do and they all started dropping. Hence why I have a nephrostomy right this moment. Another little bit of unfortunate news is that getting in my sling with the tube in my back is not that easy. It gets caught in the mesh of my sling. I’m not able to sit up for a little bit but we are continuing the pillows under the knees around the hips and pulling the legs together and I know once I have surgery, I will be back up and getting back in my chair. That was a horrible sentence but right now I really don’t care. 😜 I have never claimed that I’m a writer.

As I said, this time it’s kind of hit me hard and I’m not feeling my best but I need to get back into doing what I do. I am still fighting with Independence Blue Cross. But one thing I realized is that I gave the people I spoke with way too much credit. Basically, I thought, when I was called by Jason, that he was somebody important that could do something. He’s not he’s just a person that has a notebook that he reads off to disgruntled members that they find online. He’s basically their online boy. That does make it easier realizing that I’m just dealing with basic hourly employees and I can’t expect too much out of them. Tomorrow I have to do some adulting and really start making some calls because everything that’s done to me they deny, still. It ends up in my favor because I have no choice as to doctors that are used or ambulances that are called when I go to the hospital and there’s a law that they have to pay in-network when that happens. It just sucks that I have to jump through the hoops every time. But like I always say, they don’t know who they’re dealing with. 😏

I’m sorry about this is all over the place I’m just in kind of a strange space right now. I hope everyone out there is doing well and I’m going to try my best to get back here and do what I need to do. 🖤

Anger · chronic illness · healthcare · HELL · Medical · mental health · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings

Long time no see…

Tracy4 Comments

Life has been crazy. I wish I could say it was the kind of fun crazy, but sadly no. I’m still dealing with Independence Blue Cross regarding my hip surgery and the subsequent hip draining surgery. Now my husband is also dealing with Independence Blue Cross and their horrible service.

Independence Blue Cross actually approved some procedures for my husband and now they’re saying that we are responsible because the anesthesiologist was out of network. Excuse me Independence Blue Cross but are there monkeys working for your company? Although monkeys would probably be more intelligent. You approved it and if there was a problem with out of network doctors you should’ve said that. When you’re having procedures/surgeries you have no choice as to what doctors/Specialty doctors are used. So in essence Independence Blue Cross should pay for this. It has happened to me more than once and they went ahead and paid for it after my first appeal.

The amount of mental anguish and anxiety that Independence Blue Cross has caused us is unfathomable. Stress is not a friend of multiple sclerosis and I can feel myself getting worse. This past week I received yet another bill from the hip doctor stating I need to pay $4300. From what I’m finding out it’s because of the Precertification that the hospital is supposed to get before the surgeries. I was told by Accolade that this had been taken care of but obviously it has not. I was taken to the hospital via ambulance and they immediately admitted me due to the infection that was brewing in my leg. This was an emergency… An emergency… An emergency! How dare they say you should’ve gotten a precertification. I guess the doctors in the hospital should’ve just waited and see what happens. Hell Who cares if the infection takes over and you lose your leg, you’ve got two right! 🤦🏻‍♀️ BTW, Accolade is the go-between so Independence Blue Cross doesn’t have to talk to its members. My morning has been writing appeals through tears. The tears are not from sadness the tears are due to unmeasurable anger.

I believe what angers me the most is not the fact that Independence Blue Cross always tries to make me jump through hoops… It’s that now they’re doing this to my husband who has never had a problem before getting the neck and back injections that he so badly needs. What angers me as well is the fact that Comcast/NBC Universal does not make sure their employees have better healthcare! My husband has worked for that company for 23 years and this is the treatment he gets. Independence Blue Cross is based back east so most things become out-of-network. You also have to get up at the butt crack of dawn to be able to get a hold of anybody because we are three hours behind. It is absolutely disgusting that Comcast/NBC does not have insurance in our time zone to better help us get in touch with people. I guess we better hope that nothing bad happens to us at 2 PM or after because they are gone and out of the office at that time. I really believed when a certain person called me from Independence Blue Cross that I was going to finally get the help that I deserve since we pay good money to have their insurance. But, alas, nope! That person stopped taking my calls. A couple words come to mind… Spineless, unprofessional.

At some point something has gotta give. What I do know is if you have other options in getting your healthcare and Independence Blue Cross is one of your options, do not choose them, run as fast as you can, because unless you’re healthy and you don’t actually need insurance, they are the worst company in the United States of America. Medically, professionally, customer service wise, employee wise, you name it they are the worst! They treat you with nothing but disrespect. So please if you have other options choose those because I guarantee you will have better luck with anyone other than Independence Blue Cross.

I know I always sign off with have courage and be kind, and I do have courage but I can no longer be kind to those despicable people. I’m now off to look at legal options because I’ve been told by many through my Facebook channels that I have some. So we will see where that goes.

As per my health and regarding my hip and the hip contractures that are getting much worse, that’s not going very well. Because Independence Blue Cross does not allow me proper physical therapy I don’t know if I’ll ever be able to get out of this bed. That’s not to say I won’t keep fighting and keep trying, but it’s looking more grim as the days go on. So if there’s any wealthy philanthropist that wants to help a girl out, hit me up. I’m a good listener because that’s about all you’re going to get. 😜

Tata for now… Have courage always! 🖤

Ramblings

Day in… Day out… Minute by minute

Tracy2 Comments

I’ve been called many things. Some of which are true and some which have come out of people just trying to be being hurtful. But one thing I have been called, which I completely agree with, is stoner! 😱 You see I am in pain 24/7. So today I am playing it “straight“. It’s now 12:20 PM and the pain is horrific. My anxiety is all over the place and my depression is coming to the surface. When I smoke my life isn’t as unbearable. When I don’t, the reality of being completely and utterly trapped on a bed rips my mind apart.

So I get high. It helps me to forget the agony and the truth of my illness. It helps with my pain, anxiety, and depression. It also helps, if only for a minute, not to think about how Jason and the company he works for can keep life-saving care from a person whose life depends on it! In 2018 if Independence Blue Cross had kept me in the acute care rehab for two weeks to a month more, I would not be here right now. I would not have a $168,000 explanation of benefits because I would’ve become strong and certain things would never have happened. They are now going to be paying double, even triple of what it would’ve cost to keep me in that rehab until I was able to transfer on my own. They took that and my life away from me. I wish I could say it was only them, but my doctors have a lot to answer for as well. I know some people say I’m overly dramatic when I make the comment that they have taken my life away from me. But it’s not being dramatic, it’s the truth. My family does not have the ability nor the equipment that it will take to help me get my legs working again. After my broken hip surgery they allowed me 11 days in the nursing home for physical therapy, which was a joke. Then they gave me a whopping two visits in-home physical therapy. If I were someone without a disability I would’ve had weeks or even months of rehabilitation after breaking a hip. 

I realized in a call from Jason Sweeney last year when I was fighting to get back in the rehab that they basically feel it’s too much for me. That with my illness I wouldn’t be able to handle the rigid four hours a day six days a week PT. I reminded him that in 2018 for one full month I did four hours a day +6 days a week never once turning down PT or OT. A couple of the therapists even said that they had healthy people in there that would turn down rehab because they were too tired or sore, yet I kept going no matter what. What right do they have to tell me what I can or cannot handle?! I was there to get better so I was going to fight through the pain to reach my goal. Then Independence Blue Cross took that all away from me. They have no idea of the will and the strength of my character to get better. They have no idea who they’re dealing with. The saddest part is they don’t care. If they did, they would’ve found a way for their rent-a-doctors to actually physically come and see me.

I have so many things on my plate right now dealing with this, but one thing is that I will never stop. I am going through records to find out which incompetent buffoon wrote down that I was quadriplegic. Clearly I am not, but someone put that somewhere in my files. I will find out who did that and then I will deal with that part of this fun filled issue. I truly believe they look at people that are disabled as uneducated and uninformed. I am neither of those things. And part of me, because of this, will continue on even after I get the help I need so that I can help others. We are in the United States of America and insurance companies should not control our healthcare over our doctors. Am I angry, hell yes I am angry!

I know I’ve shared that cute little sheep before, but after writing this I needed something to give me smile. 😁

Sending out New Year’s wishes to all and I pray that 2021 gives us many reasons to be joyous! 🖤