Category: Primary Progressive MS

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 to hopefully get me back to where I was before my hip mysteriously was broken.

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…

Anger · Fear · FUCK · Health · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Religion · Sarcasm · Strength

Independence Blue Cross you never cease to amaze me.

TracyLeave a comment

For a brief moment, I really believed today was starting out well. Then I receive a call from Independence Blue Cross. I guess they feel trying to take your life is not considered an emergency and they are fighting me on paying for my trip to the hospital. I feel like they should just come to my house and shoot me, point blank, in my head. It would be so much quicker and so much less painful for me. Basically they will not allow me to go anywhere to get proper physical therapy and they won’t even give me real visits for my home for Physical Therapy. We can’t continue to pay for private visits, we live paycheck to paycheck and can’t expect help for the visits forever. That speaks volumes to me about what is allowed in our country right now. Again, and I will scream it from the rooftops, I have never ever had this much trouble with my health care insurance until a certain orange idiot took over the White House. I think companies like Independence Blue Cross feel they can deny life-saving care for people because right now our government will allow it. Their internal doctors probably were not intelligent enough to get real jobs so they sit behind a computer to read papers regarding patients, without ever meeting the patient, and make life changing decisions.

At this time in my life I’m not too worried about karma since every day brings something more painful to my life. With that being said, I hope everyone of those people that is denying me the care I need has horrible and painful issues happen to them. I truly feel that’s the only way they will understand what it’s truly like to be chronically ill. Better yet, I hope it happens to someone they love so that they can feel just as helpless and lost as my whole family feels. Was that a bit harsh? Well you know what, it’s a fucking harsh world!



I don’t have over $5000 to be able to pay for that hospital visit. I shouldn’t have to pay for that hospital visit since we pay thousands of dollars a year to have Independence Blue Cross insurance. I don’t know how those people sleep at night. Well, I guess when you have no heart or soul it’s easy. Just remember that one day you disgusting people will have to answer for what you’ve done. While I don’t believe in the heaven and hell aspect of religion nor do I believe in the God that some believe in, if there were a hell… That’s where you people will end up! I’ll see you there, because you see I’m driving the bus… 

I will go on, and to those of you that are trying to blatantly and knowingly hurt my life, be prepared because winter is coming!

Have courage and be kind.

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…

TracyLeave a comment

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.



Anger · Fear · FUCK · HELL · Medical · mental health · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Sadness · Strength

First do no harm…

Tracy7 Comments

I think doctors forget, or simply don’t care how they speak to their patients, and how those words can affect them. Tonight in a very blasé tone while shuffling papers and speaking with the nurse that was in the room via FaceTime, Dr. Kareti from AV neuroscience, told me I am end stage MS and there’s nothing more they can do for me. The humorous part is the that their doctors office is why I’m trapped in bed from pain from hip contractures. No one found the break at L1 when I fell October 2013 which landed me in the bed. No one got me the little kickstand boots to keep my legs in proper position.  I mean if I had known then what I know now I could’ve done all this stuff on my own. Unfortunately I’m not a doctor and that’s why I was going to doctors because I thought they would know what to do. And now, there’s nothing more they can do for me. Oh wait, I forgot, they can contact hospice for me… 

Oh oh oh… I tried telling him about the Physical Therapy fuck up and the visits or lack there of, and he just blew it off. I mean he was really busy looking at papers on his desk and handing things to the nurse. I must’ve interrupted him with my FaceTime appointment.

So to sum it the fuck up, basically because I have severe pain and am unable to get out of my bed, I should just throw in the towel.

Game on bitch!

Have courage and be kind

… I just read this again and I should probably just burn it down because the pain is terrible and the pain is just so intense right now I shouldn’t be blogging about anything. But I’m gonna leave it I just felt the need to say sorry. I’m a little lost and so angry. I seriously can never catch a break.

And like I always say;







Health · mental health · Multiple Sclerosis · Primary Progressive MS

You have multiple sclerosis…

Tracy4 Comments

Twenty-three years ago today, I was told, you have multiple sclerosis. I’d been searching since 1986 because I knew something was wrong. I was diagnosed with chronic fatigue syndrome and EPV. I was also diagnosed with clinical depression and anxiety. Go me! Back in 1986 MRIs were not a test doctors really ever did unless there was an accident of some sort. And no one would’ve thought multiple sclerosis when they looked at me. 👀

What my doctor saw was a healthy young woman who was working full-time and going to college at night. Chronic fatigue and the Epstein-Barr virus were easy to diagnose. Even getting these diagnoses I kept searching for answers because I knew something else was wrong.

Then, in 1997, a PA asked me to walk about 10 feet for him. I did and he immediately ordered an MRI. A physicians assistant diagnosed me. He said all he had to do was see how I walked and he thought it was either lupus or MS. The drunk walk. LOL my MRI showed many lesions of MS. My lumbar puncture was clear so I figured someone was wrong. I went on to get two second opinions and was informed that yes I have MS and I am primary progressive. I was so hoping they were wrong. They could’ve diagnosed me with the MRI and saved me from that awful lumbar puncture. 😂

I wish I could say I’ve come to terms with The MonSter that is MS, but I haven’t. Life as I know it was taken away from me and my family. MS is a wicked beast and there is no cure at this time! When people say, it’s just MS, I want to junk punch them. 😜

It’s not, just MS! It’s a debilitating, paralyzing, awful disease. We need more awareness and we need a cure… hopefully in my lifetime. 🖤

#MSWarrior #NeverGiveUp #KeepFighting #WeNeedACure

Have courage and be kind

FUCK · Medical · mental health · PAIN · Primary Progressive MS

Days that turn into years…

Tracy2 Comments

I was bored so I did a Google search on how many days it’s been since I’ve been in bed since my fall on October 10, 2013. Technically it’s more like 2,462 days taking into account doctors visits and things like that.

I also realized it’s been almost a year since I have been dealing with constant hip pain and have not been able to actually have a shower. Okay, don’t gross out I do bed baths. This timeline was when I had thought I had broken my hip and had gone to the hospital and Independence Blue Cross denied me rehab.

I probably shouldn’t look at it like this, but there you have it. I’m kind of numb. Physical Therapy hasn’t started back up yet. Quite frankly does it even matter since insurance will only give me two actual physical therapy appointments? Okay in reality they gave me four physical therapy appointments, two of which was checking me in and signing me out. Now, unfortunately for me, the young man that was helping me privately has not been able to be here because of a Covid scare so we are waiting to make sure he is OK. I know I have to keep positive and try to find the good in every day. Unfortunately for me, that other fucking shoe always has to drop when things are going well. I really hate that fucking shoe.

Being trapped in a bed is no walk in the park. Literally. And let me explain being bedbound to you. Being truly bedbound means you cannot get out of your bed for anything. I understand that people try to understand what I’m going through, but please don’t tell me you are also bedbound when you are not. It really downplays the pain of what I’m living through. Especially when I see pictures of you out of your bed doing things. Don’t get me wrong, I am so very happy that you’re able to do that, but please don’t use the term bedridden or bedbound, because you are not. Now, once I get my pain under control, I will go longer be bedbound. I just keep hope every day that I will be able to one day get my pain under control. The only problems I foresee are what has been my problem from the time I fell, my doctors…

Have courage and be kind.

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

Round and round and round we go…

TracyLeave a comment

I am in a mood and somehow I can’t find my way out of said mood. Still awaiting Physical Therapy to be covered by my insurance company. Is it any wonder that I’ve heard nothing from Independence Blue Cross? I barely reimbursed half of the money back from the transport company they told me to use. At this point they are denying me the ambulance trips with AMR and the hospital visit. I’m getting bills from that amazing time that I’m going to collections for it. 😳 Sorry but you can’t squeeze blood from a turnip… or some shit like that. I guess they don’t feel suicide is an emergency. I’m sorry, attempted suicide.

Months would’ve been easy, my waiting is moving on into my seventh year. That light at the end of the tunnel that was starting to come into view, is now flickering. I truly believe I have to keep fighting but I also understand that things may never change. I have to learn to be able to wrap my head around how my life may have to be. I’m not giving in, but I do have to be a little more realistic. I’m tired. My mind is tired. My body is tired. My soul is tired. 

Fuuuuuuuuck

Have courage and be kind.

Craziness · FUCK · Health · HELL · mental health · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Sarcasm · Strength

How do you know how to feel when you don’t know how you’re feeling?

Tracy4 Comments

Lately when my alarm goes off in the morning I’ve just been lying in my bed for a good hour or more debating… do I actually open my eyes and wake up or do I go back to sleep?! My days run into each other and as of late I’ve been a day off. I’m still waiting for the Physical Therapy to get back with my insurance. I’m very thankful that my mom is paying for private sessions while I wait, but she should not have to do that. Independence Blue Cross is yet again sitting on their thumb and twirling. I’m jumping through their hoops and doing in-home physical therapy. The pain is horrifying. Unfortunately I don’t have the medications I would get if I were in an actual rehab facility. I just keep gritting my teeth and going for it. We should not have to deal with this crap when we pay good money for actual healthcare insurance. Our country has gone to hell in a handbasket over the last 3.5 years. I’ve never in my life had this much trouble with insurance. I feel like I’m in limbo.

Although I will say that in a way it’s good that I am stuck in my room in my bed right now. We have so many idiot privileged Americans that think they don’t have to wear a mask. Look asshole, you MUST wear a fucking mask. And please don’t tell me you have a medical condition that makes it impossible for you to wear a mask. If that is true, you should keep your sick ass at home during a pandemic. I know brains are in short supply right now with everyone that follows the idiot in chief. And now we have another shit show starting with Kanye West thinking he’s going to run for president. I really hope everyone realizes this is just a ploy, most likely between him and the orange Cheeto to take away votes. But, the orange guy only got in because of the electoral college. He did not win the popular vote! So just like the south losing the war, he lost the popular vote. 

You ignorant people are the reason countries are banning Americans right now. Our country is the laughingstock of the world. And please don’t call yourself a patriot and say you love your country! If you can’t wear a mask to protect others in your wonderful country, then you’re nothing but a piece of shit! I’m sure it’s quite obvious that I despise the idiot in the White House. Not because he’s a Republican but because he’s a vile disgusting human being. If you can’t wear a mask to help your country you are no patriot!

I know my blog is going all over the place today because that’s where my head is. I’m numb right now and I’m not sure why. I am deeply saddened by everything happening in our world right now. My heart breaks with all of the hatred from certain groups of people RACISTS that are being caught on video all over the place. Again I’m probably better off being trapped in my bed because if I were anywhere near these racist “Karen” bitches, they would be laid out on the concrete. I have no time for those disgusting people.

And please don’t come at me with all lives matter. No shit Sherlock we know that. But right now in our country black lives are in jeopardy. And quite frankly all lives don’t matter until Black Lives Matter! I will no longer sit by as a white woman and be complacent about this issue. I have friends that are hurting and I will stand next to them and fight with them! ✊🏻✊🏼✊🏽✊🏾✊🏿

Unfortunately those people running around saying all lives matter really only care about life in the womb. The minute it comes out, you don’t care anymore. I won’t debate anyone on this because it’s right out there for you to see. People are out celebrating the Fourth of July while children are sitting in cages in the United States of America. For those people that think that’s acceptable, you’re a piece of shit. (we seem to have a lot of shit in our country right now don’t we) Plain and simple! I know I know you’re gonna blame their parents. I’m sorry if I lived in a shitty country I would do anything I could to get my children to a better place. If you are a parent who wouldn’t do that, I feel sorry for your children. Well shit, right now I do live in a shitty country. That’s a thought to ponder. 

Let’s see, have I missed anything or anyone?! I think I’m good to go right now. I swear lately I have eye rolled myself into oblivion with all the ignorance that I’m seeing. 🙄 I am sorry, but it’s no longer that we have a difference in opinion, we have a difference in morality!

As always, have courage and be kind! 🖤



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

The human body truly is an amazing thing.

Tracy3 Comments

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.