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

The depression is strong today

Tracy6 Comments

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.

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. 🖤