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! 🖤

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 · Medical · mental health · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Strength

Tell me I cannot do something and I will show you that I can…

When that idiot of a doctor told me via FaceTime that there’s nothing more they can do for me, I am end-stage MS, and he’ll put in a call to hospice, I almost said “you’re right!” But after talking to some amazing friends and getting the best support in the world, he can kiss my fucking ass! Dr. Kareti at AV Neuroscience, you seriously pissed off the wrong woman. Telling someone over the phone that they are at their end, in a sense, was about the most disgusting thing a doctor could do. Aside from the fact the whole time he was shuffling papers on his table and talking to a nurse, what he did was unconscionable. What if I had been alone? What if I had no support system? He quite possibly could’ve sent someone over the edge by doing that. 

Now, I’m gonna show him just how incompetent and how wrong he is! Tell me I can’t asshole… I’m gonna show you I fucking can! You’ve just given me more strength than you know. I will admit that I was frightened of the places my mind went to after the phone call. But I made it through with so much help from my friends! I’m going to keep going even if I have to crawl.

I’m going to Keep fighting. One things for sure is I’m not going to be silent when I don’t receive the best healthcare possible. I have a remote call with my pain management doctor today and I will be informing him of the conversation I had with the neurologist. I’m curious to see if he’s going to agree with him or not. 

I’m tired, I’m scared, I’m frustrated, I’m angry, but the warrior in me is going to rise from the ashes, just like the Phoenix!!

Have courage and be kind.



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

The human body truly is an amazing thing.

While I await more rehab through my insurance, I am having a private Physical Therapy. It really sucks when you have to pay for some thing out of your pocket to keep it going when you pay thousands to have healthcare insurance. I’m hoping this will be taken care of within the next couple weeks and my insurance will pick it back up. I knew I could not stop for the little bits that I’ve gained would be lost. I’m very thankful to my stepmom or as I call her, mom, for taking care of private sessions for me.

I really believe that I will be able to get back into my Hoyer lift and into my chair within the month of July. I’m realizing there are some medical issues I will have to get taken care of as well. Both of my knees have frontal torn meniscus’s. This causes some serious pain when bending my knees. But we are taking it slowly and the pain is lessening. I should’ve had these problems fixed years ago, but they would not fix the issue that caused the problems. My doctor told me insurance would not cover it because of my illness and the fact that I spent a lot of time in a wheelchair. So basically every couple years I would just have to get these surgeries to put a Band-Aid on the issue. I had already had one surgery to fix the issue and now I was going to need another one… That’s another story for another blog.

My body lets my physical therapist know when it’s had enough. My leg will literally stop any movement. If that makes any sense at all. It truly is amazing how the human body works to protects itself. I am learning the saying, move it or lose it, is so very true. I’m doing everything I can on my own to move my legs as much as I can, and my husband is also trying to help as much as possible. He has his own back issues and it causes him a lot of pain helping me. So it’s a lot of moaning and groaning going on as he moves me around. Old people problems. 😜

Patience is something that I have to work on. It really isn’t one of my virtues. I am learning and I know that it took 6 1/2 years to get to this place so it’s not going to be fixed overnight. This time I will not give up. This time I will not give in. This time I will fight for my life!

Have courage and be kind. 

Health · PAIN · Ramblings

Baby steps

Today’s fun is trying to get my ankles used to wearing my Forrest Gump shoes again. 😂 It’s been a while and I think my legs are going to be pissed off at me tonight. 🤷🏻‍♀️

Tomorrow we will be trying to get me in the chair again. My lower back is still hurting really bad so we didn’t want to push it today.

And now I’ve had these on now for 2 1/2 hours and I think that’s long enough for today. 

Baby steps… 🖤

Have courage and be kind.

Fear · Health · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Ramblings

We can’t do it alone…

Since my husband’s been home thanks to the corona, we’ve been moving my legs more and more. It’s all been leading up to getting me into my chair. Today was that day. I wish I could say that it worked and I got into my chair. But I can’t. The pain in my lower back, my hips, and my knees was so excruciating I couldn’t do it. I was scared we were going to fracture another bone in my back. I’m so angry and bawling like a little kid. I’m angry at myself that I just didn’t bite the bullet and have them throw me into my chair. The pain was/is worse than the contractions I experienced giving birth to my son. 😢

We will try again, hopefully tomorrow. But after today, I’m scared… so scared. It really feels like I’ll never get out of his bed. I am bedridden in every sense of the word. I know I say it all the time, but wow, did my doctors drop the ball in 2013. And wow, did Independence Blue Cross fuck me in regards to Rehab. It just sucks knowing that there is no way to get help. We can’t do it alone. I’m thankful that tomorrow is my counseling appointment as I’m falling apart right now. I’m so disappointed in myself that I couldn’t do it. I know I shouldn’t be, but I am.

Oh well…

Have courage and be kind.