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! 🖤
Making it Through the Rain 
Hugs❤️❤️❤️
You are a fighter, and you amaze me every day!!!
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Thank you so much! Most days I don’t feel like much of a fighter, but I just keep pushing through, like we all have to do in this life. Thank you again, and hugs back to you!🫂🖤
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Well, Tracy. There’s not much more I can think of saying because your answered everything with determination and a plan. I continued to be flabbergasted with the unbelievably horrible and minimal medical care you receive. I just cannot imagine the lack of compassion, conscience, and intelligence of the physicians you have, and of course Independence Blue Cross. I know you’ve thought of and I believe spoken to a lawyer. Tracy, if love and support from your friends helps at all, you’ve got that in abundance.
You said the call will UCLA went quite well. Do you feel like sharing anything about what they said?
Lastly, have your physicians ordered a PTH (parathyroid hormone) level done? I’m not aware of the origins of your osteoporosis and kidney stones, but those are two very big symptoms of an elevated PTH. The elevation of PTH is caused by enlarged PT glands or a benign growth on one of them. This increased production of PTH pulls calcium out of our bones thinking there isn’t enough circulating serum calcium. Most presentations of elevated PTH (but not all) have an elevated serum calcium or ionized calcium level (the better of the two tests). I know your situation is extremely complicated. Are there any other physicians in Palmdale that take Independence Blue Cross? You don’t have to answer any of my nosy questions.
I know you will keep fighting for yourself and the care you desperately need and deserve. Sending love. How are the kids?
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Hey there! How are you? The one thing I don’t know if I mentioned is finally after three years all of my ambulance bills have been taken care of. And now I think I’m just fucking tired. I had to fight so long for just ambulance bills and they’re doing more right now which will be a new blog when I get up the strength to write it. But getting all that taken care of is a win. UCLA was amazing. Unfortunately I’m having a hard time getting the MRI for them because Blue Cross informed me they’re out of network and they won’t cover the whole thing. So now I’m having to fight that.
I’ve talked to attorneys and I have a couple in mind I just think that fight would take too much out of me and I don’t think I’d survive it honestly. So I’m just gonna keep trying to get the Physical Therapy I need which will probably never happen, but I’ll keep trying.
My kidney stones are due to the fact that I can’t sit up fully because of pain so the stones don’t flow properly and they just grow and grow. So I’ve actually been trying to sit up higher more and more and, knock on wood, I didn’t have to go to the hospital once last year for anything. Knock on wood again! 😂
I hope you and the family are well!🖤🫂
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Hi Tracy, Thank you for your reply! I apologize about being so nosy. I understand how exhausted you must be. It is an absolute crime that you have to fight so hard to have your medical needs covered. That is fantastic that they finally covered the ambulance bills. Those are a BEAST! GOOD FOR YOU for keeping at them!!! One thing at a time even though you need a dozen things all at once.
I wasn’t certain about the kidney stones. I didn’t know if they had to do with the MS or being bedridden. I can understand why they don’t move down, my question is why are they forming in the first place? If you don’t know, of course that is fine. There are many reasons. I am wanting for you to ask for a PTH and calcium level next time you have blood work drawn. You should be able to look back at your calcium level on your last metabolic panel results that has sodium, potassium, etc. However, if your calcium level was elevated someone should have been alerted to that. No need to comment on any of this. The reason this is on my mind is I just had a parathyroidectomy on 1/3/24. I also have osteoporosis and kidney stones, along with some other symptoms of hyperparathyroidism. I’m doing absolutely fine after the surgery.
I’m so glad the call with UCLA was wonderful. I’m wondering if you contacted them and tell them you are unable to get complete coverage for the MRI if they could help? I’m so full of ideas…..I’m sorry. I know how tired you are.
I love you, Tracy. I’m always ready to gab.
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