Category: Multiple Sclerosis

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! 🖤

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! 🖤

Anger · Multiple Sclerosis

Dear Anyone Who Wants to Bring Awareness to Discrimination against People with Disabilities

Tracy6 Comments

From my friend: I tried to fly on Southwest Airlines today and had the MOST miserable experience. I have Multiple Sclerosis, as does my friend that I was traveling with (who drove 6 hours from Ohio last night to fly out today) and we were trying to go see our bedbound friend with MS in California. However, my friend who I was traveling with has a severely developmentally disabled son who is 22 years old but has the cognitive abilities of an 18-month-old; therefor he is physically unable to wear a mask. We even brought two doctor’s notes from Bryan’s physicians stating that he requires a medical exemption to the mask, a negative COVID test from with the past week, AND he has already had both COVID vaccinations.

We made it through checking our bags, multiple people at the security checkpoints, and 3 different customer service representatives during our 2+ hours at Midway airport and not until we were literally boarded on the plane (the entire plane actually ready to go) and THEN they conveniently asked if we had paperwork?!?!?!? After presenting them with ALL of our paperwork…they made us wait approximately 15 more minutes before the supervisor returned to advise us that we had to deplane. They forced 3 disabled people off a flight….someone needs to help us share our story so that this doesn’t happen to anyone else. I would appreciate any help you could offer in helping others like us. Thank you!

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

And here we go again… Part 2

Tracy3 Comments

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…

Tracy1 Comment

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…

TracyLeave a comment

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!

Tracy3 Comments

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…