My name is Max Oles, and I am making this on behalf of not just myself, but also my brother and sister Jordan and Jaiden to ask for help regarding our mom Jami Oles. 
 

By making this fundraiser, we hope that my mom will be able to get some sort of relief and support from friends, family and maybe some of the people she has helped over the years. 
 

Ever since we can remember, our mom has always helped others, and not because she had to, but because she enjoyed it. Now is the time, more than ever, she needs help and support from anyone who care about her. I don’t know all of the medical words or how to explain what is going on, so she is going to write all of it out. I do know that we have never seen our mom this sick and unable to do function some days.

All 3 of us help her when we can, at any time, but when it comes to certain things, we do not have the resources to help her. This is why we are reaching out to others.  
 

My mom has a very serious and complicated illness, and on top of that she is in a very stressful environment. From what I do know about her condition, stress is one of the worst things for her. Between not being able to work and her living situation, she is being bombarded with so much stress and does not have the support that she needs and deserves. It’s very frustrating to watch this happen to our mom who has always been full of life and she has SO much more life to live, along with so many more people she wants to help. 
 

I will let her explain the medical aspect of her situation.

Hi everyone 👋🏼 It’s Jami,

Well here it goes, I’m going to bare my soul because I have no other options. I completely understand if you just want to read this to know what’s going on and not want to donate anything, I hold no hard feelings towards anyone because the fact is, this illness has humbled me in multiple different ways. It has taken me to some very dark places, but has also made me appreciate certain things and people more than ever. 

I never in a million years thought I would be someone who would have any reason to agree to chemotherapy, but here I am. I think I may have jinxed myself years ago when I said I would never agree to chemo. Well, you know what they say, God has an interesting sense of humor. When I was given the choice, there was no choice. My illness had become so serious, it was either chemo or continue to decline and eventually this illness would have taken over which would have ended in death, and no, that’s not me being dramatic.
 

As many of you know I’ve been going through a lot of chronic issues over the past few years, and even though we had the tests/evidence that I was dealing with chronic EBV (a Epstein Barr Virus) , there’s not many Doctors who know much about it. I was referred to an Infectious Disease Dr. in 2022 , after a truly insane and thorough amount of testing, diagnosed me with a very rare illnesses callled Chronic Active EBV, which is a different beast than EBV reactivations. 

I have been lucky enough to have an amazing team of Doctors that not only respect that I believe in the power of nature, but they encourage my supplements & ‘alternative’ ways. Unfortunately, I have not been able to keep up with any sort of regimen. 

My EBV has been active per by blood work since 2021. Nobody ever did anything because not many Dr’s come across this here in the US. The truth is, over 90% of the WORLDS population has EBV. Many know it as ‘mono’. They hear that and think, no big deal. However, mononucleosis is the first and earliest manifestation of EBV. It stays in our body for the rest of our lives. EBV is actually a very serious virus. There are 7 oncogenic viruses that they know of currently - oncogenic means “cancer causing’. 

Many people have and are familiar with hearing about EBV reactivations. It can happen during any stressful event in their life. It could be a physical stressor or a mental/emotional stress. If someone reactivates, they usually have symptoms very similar to severe chronic fatigue. They eventually go back into the latent phase and their chronic fatigue tends to linger. Most who reactivate, tend to go back into the latent phase fairly quickly compared to someone like me, who has never been able to get it back to its latent form.

For MANY years, I solely relied on the supplements and foods that are proven to be effective against EBV. I still believe in them. The problem is money money money. As usual! Guess what’s free for me though? My chemo 🤦🏼‍♀️I know it’s backwards and it’s infuriating.

The entire time I was focusing on EBV and the black mold exposure I encountered and I was doing my best with everything. However, human physiology, especially when you have a virus actively messing around with your DNA, there was something else was happening in my body I wasn’t aware of. 

In 2018 I had to have an emergency splenectomy and since then I would constantly have these enlarged lymph nodes popping up all over. I had one in my neck get so large it became hard to swallow and compressed my carotid artery. I would get sent to a specialist, and they would get removed. Since they were mimicking lymphoma, but it wasn’t, EVERY SINGLE DOCTOR would tell me I’m a “mystery”. My blood work was abnormal, and I had these inflammatory tumors all over. 
 

I had a bone marrow biopsy a while back and it was clear, it just showed a pretty severely suppressed immune system.

Then between 2023-2024 my condition became much much worse fast. I could feel it in my body, and sure enough all the clinical testing showed how bad things had gotten.
 

I had to go to the ER for an acute illness and due to no spleen I had to get a lumbar puncture since people with no spleen are at a very high risk of sepsis & meningitis over very trivial infections that other people would never even have a symptom of.
 

Through this ordeal the neurologist on my case accidently found via MRI’s that  I had multiple lesions all throughout my lumbar spine. Now, my latest scan showed I now have them all throughout my thoracic spine as well.

This made my oncologist want another bone marrow biopsy due to these lesions and, unfortunately, the pathologist found the inflammatory tumors had made their way into my bone marrow. This is why things went from bad to worse. Nothing and I mean NOTHING should be in your bone marrow. It is the one place where so many things can go wrong. So, it was a big blow. 

I was immediately referred to the Mayo Clinic because none of my Specialists here (Oncologist, Rheumatologis, Infectious Diseases Dr.) had ever experienced this in a patient.

The severity and urgency of having inflammatory tumors in my bone marrow are:

• Our bone marrow makes ALL of our blood cells. This could cause a severe case of chronic leukemia called myelofibrosis. The only cure is a bone marrow transplant.

• Since the tumors are in my bone marrow the inflammatory tumors have access to ALL bones. As of now, we do know for certain that it is causing a lot of damage to my thoracic and lumbar spine. I am at risk for spontaneous fractures, along with the lesions growing and compressing my spinal cord. Three of them already compress nerves. This could cause more damage to any bone in my body. I also have bone damage to my feet. Most of the damage that is done by inflammatory tumors is irreversible once done, especially in the bone. As of now, the goal is to stop further damage. 
  
   
• I’m caught in a very tricky situation. Chemo is necessary to help rid my bone marrow of these inflammatory tumors that are not just in my bone marrow, but throughout my body and they can invade any organ. ​​​​​​​The suppression of my immune system, specifically bone marrow suppression, to prevent bone marrow and other organ damage, also allows the chronic active EBV to in simple terms, ‘run wild’ and if my immune system allows the EBV to get to a certain strength, it is fatal if not caught in time. The only cure is a specific stem cell transplant.

• I am currently unable to work, although I have tried, due to my immune system, damage to my spine along with both feet. The pain I am in daily is indescribable. I have been on chemo for 6 weeks now and I was just increased and will be again soon. The side effects are brutal and have changed my life drastically. This is a chemo I take via pill form, but the side effects are the same. IV chemo hits much harder and faster, whereas the oral chemo I am on is meant to build and build because it’s meant for long term use 😫If you know me at all, you KNOW I don’t want this at all. I am losing hair, just not as fast as those with IV chemo. I try to keep it braided and only brush once a day, but it’s not helping. If this oral chemotherapy doesn’t do the job, I will have to do the oral PLUS traditional IV chemotherapy since the goal is to keep me on oral because this is a chronic condition. I am obviously trying so hard NOT to go that route.

I really do not want to make so much this public, but I also feel that if people are going to help, they deserve to know the full truth. Some may be thinking I have a husband to help me. At this time I do not. We separated a week before I started chemo. 
 

My daughter and I are at am at my mom’s where I don’t have a room, my mom & step dad have a space with a day bed. Jaiden is able to move out in a month, and although, I AM grateful my mom and stepdad took us in, the conditions are not sustainable for someone dealing with an illness and a treatment like mine. It is an extremely stressful environment for everyone, and as I mentioned, stress is my worst enemy. It is easy to say, well, don’t be stressed, or find a way to cope, but that is much easier said than done. 

My husband, Roman, does give  weekly payments, but it is just enough to help me with paying my mom, paying for the things I have to take care of with my dog, my groceries,  maki payments on getting my car out of the shop. 

I have applied for disability, with my Specialists encouragement,  but there have been changes to disability and it is now taking up to a year for them to process applications. Not to actually get disability, but to just hear back from them and start getting together anything they ask for. My Doctors have all ensured me I should be approved because on top of all of this, I was also diagnosed with rheumatoid arthritis. I don’t believe I have 3 separate diagnosis. In the research, all of this can be linked to chronic active EBV as it is very rare, very serious and EBV alone can cause havoc on the body. Unfortunately, when it stays in its active state, it is consistently causing damage. 
 

It causes the immune system to go absolutely haywire, it changes the DNA inside of the cells in infects. Either way, they feel the best course of action due to the bone marrow involvement currently is chemo. I will continue to be increased to ensure bone marrow suppression. If there is no improvement, by my next bone marrow biopsy, I was told the next move is to IV infusions. As I stated at the top, this is not a situation I ever thought I would be in. 

I have accepted that part of the situation for now. This illness, per my Mayo Specialist “ is just like a chronic cancer”. I feel extremely vulnerable without the support of Integrative Medicine. I am a big believer that when Traditional Medicine is necessary, it is best paired with what Nature has offered us to heal for thousands of years. Integrative Medicine is not shunning Traditional Medicine, it is bringing the two modalities together for the best outcome. Oddly enough, many of the studies have shown, natural medicine helps in many different ways when it comes to people who do have to take chemo. 
 

The worse part of it ALL, is that even though we have so much science telling us it works and the outcomes are better, here in the States, Natural Medicine & its modalities are not covered by insurance. I hope to see the day that this changes. 
 

This is one of the main reasons I feel asking for help is necessary. I want to be around for a long time, and not just around living a life of pain, exhaustion, hair loss, dizziness, vision changes, “chemo brain” (yes, it is VERY REAL), and the rest of the long list of side effects of the these meds.

It is terrifying and makes me feel extremely vulnerable that I have no way of counteracting and mitigating all of the damage being done to my body. 
 

LONG TERM:

The illness I have, IF my viral load is ‘under control’ usually gives people 5-10 yrs depending on treatment. I personally don’t believe a Dr. or book can tell us how long we have to live, but that is what the research says if you don’t get the stem cell transplant. I do not know if it is too late and the CAEBV has done too much damage to my immune system, to get the inflammatory tumors under control, but I prefer to believe our mindset has a powerful and direct impact on the healing of our bodies.

I am ACUTELY aware of the severe damage these illnesses can cause if treatments, both natural and/or traditional medicine fail to tame Chronic Active EBV. Then again, before things got so bad, I was doing it all with supplements, food among other modalities.

Therefore, my hope is, with your help, I can get myself some supplements that have been researched and proven to help suppress the EBV virus. I believe I could possibly feel better through the chemo treatment with some IV nutrient infusions, maybe see a TCM Dr., get Reiki sessions, Acupuncture for my intense pain and fatigue.

NONE of that will be remotely possible without help from others. 
 

My other HUGE goal is to get back to feeling well enough and  get myself out of this extremely stressful living situation which is going to cause me to lose my dog 💔As I stated,  I know my mom and stepdad took me in because there was no other choice, it is not a good situation for anyone in the house, especially someone who is facing such a beast of an illness. 
 

Trust me when I tell you, there ARE illnesses & diseases out there that bring  the same amount of fear, uncertainty and a feel of severe isolation that cancer brings. 
 

I never thought I would be making preparations and signing papers of who is going to make my medical decisions if I am unable to and talking about this with my children about these subjects this early. I understand I’m getting older, but this is a bit much. I’m also acutely aware there are many people who have it much worse than I do. If I could wave a wand and bring healing to every person in this world I would do it in a heartbeat if not faster. 
 

I won’t pretend to speak for everyone, because we are all having and dealing differently with our experiences. I can only speak for mine, and this is nothing I’ve ever shared or said out loud to anyone..

Illness is ugly. Illness is scary. Illness is lonely, depressing. It makes you realize so many things about your own life and the life of your children all at once and every single day you’re faced with it because every single day when your eyes first open, you immediately feel it. Another day where the illness determines what you can and can’t do. 
 

The illness makes you feel invisible to other, certainly a burden. People who have support of friends and family are so incredibly blessed, because going through it day by day alone is one of the worst feelings out of it all. Keeping track of all your tests, all your appointments, timing when I take my chemo so I know what days I am going to be absolutely useless. Then realizing when the dose is increase, you’re pretty useless daily until your body adjusts. Then, when your body adjusts, you still can’t get away from the handfuls of hair coming out no matter how gentle you are with your hair, no matter what you wash your hair with, no matter what you try to prevent so much coming out. 
 

You still have to be very careful with how you plan your day because it doesn’t matter that you’ve adjusted to the dose, you’re going to hit walls throughout the day. These walls come out of nowhere and you have no choice but to STOP and listen, and honor what your body needs in that moment, and that is to stop and just crash. When this happens to me, I have no control, I have to sleep. It may be for an hour, it may be for 3 or 4 hours, I never know. 
 

You have to remind yourself to eat because your appetite is almost nonexistent (a gift from the EBV), then you have to make sure when you drink, you’re drinking electrolytes so you don’t throw yourself into an imbalance because you also forget to drink as much as you should. In my situation, the damage to my back is so severe that walking too far makes my back seize up like one big charlie horse. I can si, but what I really need is my heating pad and it would be great if I could take some Ibuprofen, but I’m not aloud to with the chemo, unless I want to severely damage my kidneys which can happen even with 1 dose. 
 

Most days, my muscles feel as if I’ve just done 50 squats and had an insane arm day. If I have a good day and I don‘t feel that, I have to be sure not to do too much because of if I take advantage of a ‘good day’, I will pay either later or the next day and I will pay dearly with more than usual pain and stiffness which leaves me useless until I get a break. Oh and when I do happen to get out and do something, if someone were to watch me, they may actually think I’m drunk due to the severe dizziness that is always ready to come out and play. Then there are the headaches. The severe heat intolerance because my heart will go from 70 to 130ish within seconds of trying to be ‘active’ in this heat. There’s headaches, insomnia, judgement from people, even family and friends because they just don’t get it and never bother to ask. Maybe they don’t want to know, or worse, maybe they just done care. Or maybe they’re just uncomfortable about things they can’t & really don’t want to understand. I mean, let’s face it, as with most ‘invisible‘ illnesses, it’s almost impossible for anyone to understand how you can look and seem ‘normal’ yet inside, your body is trying to cut your time short. Ya, not very fun to talk about. So they ask how are you and most of us just say “fine” because what else is there to say 🤷🏼‍♀️ 

There’s no much more I could go on about, when it comes to living with a severe chronic illness, pain and the hardest part of all of it is that, I just want to feel like me again. I still have so much more I want to do. I want to bake more, have the energy to go do more things with the people I love. I recently went to see Halsey with my sister-in-law which was something I needed so badly, but I also knew I was going to pay dearly for it physically the next day. Thank GOD we had a beautiful breeze and seats, but I had a blast and paying the price the next day was worth it! It was a more than fair trade, but it’s all the days in between when I don’t get to go see my favorite singer and yet physically and mentally, I still pay a horrible price. 

I don’t know what I did to deserve this. I’ve done no but be of service to others since 18 years of age. Maybe it is all of the times I didn’t take care of myself catching up with me 🤷🏼‍♀️ Maybe I am meant to go thro this to one day help someone else or others, I really don’t know. What I do know is that I’m so incredibly drained and exhausted from life in general. I just felt like sharing a bit of what it’s like in my mind and body when it comes to living with this very intense illness that feels like being a prisoner in your own bod.

Please feel free to ask any questions, I am an open book and will be completely transparent in regards to my condition, updates and any questions you may have. 
 

I have my medical records, and I will be posting the important ones, and give a small explanation of each one. 

My current team of Specialists Doctors that I see regularly are:

Dr. Townsend (Oncology)

Dr. Issac (Infectious Disease)

Dr. McCabe (Rheumatology)

Dr. Wang (Mayo Rheumatology)

Dr. Elwasila (Mayo Infectious Disease) 

I just want my life back, I want my health back, and I have been trying to do it alone for years now and I have done nothing but get severely worse, and this is coming from someone who has studied EBV since 2005, immunology even before that, and hav plenty of herbal and supplement education and practice under my belt for over 20 yrs now. So, trust me when I say, this is not one of those things you can just throw a bunch of things at, it can end up making things worse.

I know this has been very long, I appreciate anyone who has read it all. Thank you so much for any donation, no matter how small. If you cannot donate, please keep me in your prayers, thoughts, send me healing and good energy because I desperately need it 🙏🏼

~ Jami 🌼💞