I have pulmonary hypertension, not the kind they can fix. There are 14 new meds for the other kind. I also found out yesterday I have coronary artery disease, which they can’t fix. My aortic valve is also involved and I’m headed back to the cardiologist today to see, what we can do, if anything. I will be tested for blood clots March 7, which is a common occurrence with what I have. They CAN operate on them unless I have a stroke first. Someone will come to my home to test to see if I need oxygen at night through my cpap, which the pulmonologist highly suspects. And, of course, my Lyme disease complicates everything. I am grounded for good but trying to keep my spirits up. I’ve talked to my children and, as always, Henry Earl is my hero.

I went to my new cardiologist on February 8. I told him my symptoms and I think he actually listened. He is doing a heart catheterization on me February 14. Happy Valentines Day to me! After having Lyme disease for 14 years and reading all of the research I can get my hands on, I believe I have Lyme carditis. It is rare, but what isn’t with this disease? I also believe the stem cell replacement I had has exacerbated my Lyme. I recently read that stem cells do no good unless you get rid of the bacterias from Lyme first. Like all of the other treatments I’ve had, I have felt better for a period of time, just to wind up falling right back down the rabbit hole. I have six different diseases from two tick bites (I also had two bullseye rashes, one under my left breast, 9″ in diameter and one on my butt, 6″ in diameter). In addition to Lyme disease, I have Borrelia miyamotoi infection, Ehrlichiosis. Babesiosis, Hashimotos, and TBRF (tick Bourne relapsing fever). My fever, at one point, reached 107.1. If Henry had not immediately packed me down in ice, I probably wouldn’t be writing this. I sometimes run a low grade fever for days, with it reoccurring often.

My reason for the cardiac visit is because I’m gasping for breath after walking 20 feet and it feels like an elephant is standing on my chest. I already know that Lyme thickens the blood, but it also thickens heart valves and the different bacterias cause heart artery blockage and irregular heart rhythm. The problem is most cardiologist know nothing about Lyme and certainly not Lyme carditis. If they find blockage and stint it or my aortic valve is replaced (this was one concern when I went on the 8th), that’s all fine and good, but it still does not stop heart carditis. The bacteria is still there damaging my heart. One alternative is a pacemaker, another is a heart transplant, but, again, bacteria is still rampant. My biggest fear is that they will find nothing and I will live this way for the rest of my life, until the bacteria kills me, which might be better than living this way. I go back and forth about that. Another test I will have is an oxygen saturation test to see if I qualify to be on oxygen permanently. This disease has caused so much pain and money. Every joint in my body hurts, I lost five years of memories because I had brain fog so bad, I had Bell’s Palsy, my brain swelled, my eyes bulged, I couldn’t complete sentences because I couldn’t remember simple words, I gained 100 pounds because I’ve been bedridden for long periods of time, I have neuropathy and that’s just the short list. My husband has to do everything and while he calls it an act of love, I call it guilt. My entire life and my husband’s entire life has changed. We are in constant stress over what’s going to happen to me next. Every test, every procedure, every diagnosis has come out-of-pocket because the CDC doesn’t recognize chronic Lyme, therefore, insurance will not pay. All in all, I have spent somewhere around $400,000. My heart goes out to the people who mortgage their houses, sell their properties, or just plain don’t have the money to pursue “cures”. At the clinic in LA, there were entire families there with this unending disease.

I’m writing all of this now because my family needs to know that I have fought a good fight. I’m ready for whatever comes down the pike. I want to live again, I want to see my grandchildren grow up, I want to live life to the fullest (as I have always done), I want to laugh and have fun with my TRUE friends, but I am also very, very, tired.

I’m not going to be publicly writing about Lyme anymore, because I am sick to death of it. (No pun intended) It is such a complicated disease that I know in MY lifetime there will be no cure. But hopefully by the time my grandchildren are grown, some of the things we Lymies write about will make a difference. I hope so, because whether people know it or not, it’s already a pandemic (thousands are walking around that don’t know they have it yet) and it’s only going to get worse. I (horribly) get jealous of all the attention that other horrible diseases get. THEY get donations for research, 5K walks, ribbons, multiple tv ads, buttons, bumper stickers….we get BILLS!

ENOUGH!!

I guess I’m back to square one. This all started fourteen years ago when I was building our house and I couldn’t walk across a room without gasping for air and getting so dizzy, I thought I would faint. That’s exactly where I am today. My arms and legs feel like lead. Just to reach across a table to get something seems overwhelming. I fall asleep sitting up. I know my adrenal glands have bottomed out. I went to my GP yesterday and he sent me home with B12 shots. They have never had any affect on me, but I accepted them. Gave myself one yesterday afternoon and fell asleep sitting straight up. I wonder if they can have an opposite affect on some people. If so, I would be in that small percentile.

So, my next move is a visit to the cardiologist. That was my first move fourteen years ago. But I’m tired. So if the tests are ok, I guess I’ll just live with what I’ve got.

Travel is easy enough as long as I go first class and have wheelchairs at every airport, but there are so many things that I miss…..being able to really play with my grandchildren, dancing, riding horses, friends that have fallen to the wayside, even chores around the house!!

But I have to accept the things I cannot seem to change.

I am in the same frame of mind as you. I have preached and posted and preached!! Nobody wants to listen and, I too, am trying to come to terms with this being my life, and like you, I’ve just about accepted it. My brothers have come to believe I’m faking this…haven’t heard from them in three years. My stepdaughter the other day said to her dad, “There’s nothing wrong with her! She’s been dying since I met her!” I used to be the life of any party but I only have two friends now that still come around. I DO have a wonderful husband that does everything, but that, in itself, makes me feel so guilty. I was so excited about stem cells. 😢 I haven’t even heard from Infusio since I got them and I’ve been hospitalized three times. I give. I’m done. And they want to shoot exosomes in us now!! I researched that and it can go one of two ways. They can latch on to your good cells and you’ll be fine OR they can latch on to your bad cells and make you worse. I don’t know about you, but, I’m not feeling that lucky these days! Sorry, venting, and just downright tired….

I wrote this tonight to a person in my private Lyme group. I meant it. I’m tired. I’m going to see my cardiologist in a few days and if my heart is ok (having Lyme thickens you heart valve and mine had already started thickening when I was diagnosed) I’m back to square one again. I can’t walk across a room without gasping for air. That’s how this all started fourteen years ago. I’ve been married almost fifteen. Boy, did my husband get a bummer. He never imagined pushing me around in a wheelchair. My pain is ALMOST unbearable. The fatigue is overwhelming. As my Lyme Dr said after my last bloodwork (3 weeks ago) “Your immune system is zero.” I’ve become a germaphobe! I’m sick of the whole thing! I don’t even want to hear myself!

Don’t go thinking I’m suicidal. I’m not. I’ll still go and do when I can (which isn’t often, because getting dressed exhaust me)

If this gets posted to FB, I’m sorry. I’ve tried to turn it off in this blog several times. If it posts this time, I’ll change blog sites. Writing is cathartic for me. At least I have that!

After my long, tough, adventure with my first stem cells, I would have sworn to you I’d never do anything like that again. I lied and this is how it came about. After a year post stem cells, I still had so much pain in my neck and shoulders that I was still miserable. The pain was still hampering me from going and doing and if I sat or stood very long, I was still in excruciating pain. So, once again, I decided to do something about it. All or nothing for me!

I went to see Dr C, since he is the one and only Dr who fully understands what I’ve been through and everything I had done in LA. He examined my neck, we did acupuncture and it relieved my pain for a while but inevitably came back. He told me I could do traction, a back brace, and neck brace OR I could jump all the way to the front of the line and get umbilical stem cells shot in my neck. Since I’m not a good regimen follower, I went straight to the latter.

On November 1, 2018, I got umbilical cord stem cells shot in my neck. Four on one side of my spine, four on the other. I can honestly say that through everything I’ve been through, that was the most painful. But I hung on to that table until my knuckles turned white and got thru it. Then, that was followed by about ten ozone shots in shoulders and surrounding area. They were a piece of cake comparatively speaking.

What’s supposed to happen then is that you go home, swell, feel like hell three or four days, then go on with your regular activities and wait for the cells to do their magic. BUT, as we all know, nothing goes as planned for me!

First of all, let me preface this by saying, my neck has not hurt another day. NOT ONE! But here’s what did happen. For several days, I did feel swollen and a little uncomfortable. On November 6, my eyes started bothering me. For a while I could only see half of everything, then the room got “wavy” and I almost fainted, then I had what I can only describe as lightning bolts shooting through my eyes. Dr C wants me to go and make sure (when I’m able again) these were not TIAs.

But on November 7 all hell broke loose. I woke that morning with my elbow hurting. This may sound like a slight thing but it was unbearable. It was beet red, swollen, and I couldn’t get comfortable no matter what. I couldn’t begin to touch it. Then came the pain in my feet and ankles. In one day, this pain went from the outside of my right foot, down the bone of my big toe, then moved all the way around my foot to the outside bone, lodging there and my ankle. My left foot was in my instep and ankle.

November 8, 2018

But just when I thought I had seen it all, the pain in my elbow started radiating down my ulna and made my last two fingers tingle, then become numb and they are still that way today. But the real pain was still to come! In the afternoon the pain from my elbow started radiating UP my arm. This pain was so intense it made me sob! And it stayed there. It moved under my arm and to the front of my chest. It was hot to the touch, swollen, and I could not lift my arm. I felt like I had broken bones all over my body. I kept a low grade fever through all of this. I was already back to my potty chair but now a bedpan was necessary. I sobbed every time I moved.

On November 11, I guess I was strangely quiet. I felt worse that day and very depressed. I had been lying there for three days. No television, no reading, no music…..just staring at the ceiling in stunned pain, waiting for another day to go by. I even cut my phone off. I had missed my namesake’s wedding (Betsy Battle) and I was very low. Henry Earl went to bed about 9:00. I suddenly realized I hadn’t been to the bathroom in quite some time and had quit being thirsty. I hurt all over so fever didn’t really enter my mind but at some point (and this is all a blur) I took my temperature. 107.1!!! I tried again. Same thing. I got him up, he got another thermometer….same thing. We panicked, he wanted to call the ambulance but I had had this happen to me once before as a child and I remembered the Dr packing me in ice. So that’s what we did. At 104.5, I started sweating and the fever came completely down. Close one! I ran a low grade fever again for two more days and haven’t had fever since.

The state of things today: I still have pain in my right arm. It’s getting better but I still can’t reach out and pick up anything. My left ankle is still giving me fits. Henry hired nurses to take care of me during the day so he can harvest his pecans. I can’t get up because my right ankle won’t let me stand and my right arm can’t stand weight. I’m getting better so the depression is under control. (Sorta)

My trusty companions, Jake and Kyna, are by my side, so hopefully I’ll be back in the world again soon.

In eight days it will have been a year since my stem cell replacement. Talk about a roller coaster!! I’ve gone for weeks and felt great just to be knocked back to my knees again and again. Every time I started a new medicine, I would go back down the rabbit hole. That seems backwards I know but the medicine would start fighting yet another disease from the tick and I could literally feel the war going on in my body. I probably got rid of Lyme disease a while back but I also have diseases called Bartonella, Ehrlichiosis, Hashimotos, Borrella, Babesiosis, and the MOST dangerous, Anaplasmosis. So my body goes through hell every time a new medicine is introduced to fight a certain disease.

The good news is I am feeling better. I don’t hurt EVERY day. It’s true that I never know from day to day how I’m going to feel, but I probably have more good days than bad. I’m going and doing a little more. I still have problems with my balance. I certainly can’t dance…one twirl and I’d do a face plant. I find myself listing when I head toward a door and am just as likely to hit the wall as get though the opening! 🤪 But, that being said, as long as I have my trusty cane or Henry Earl, I’m making it ok.

I’m taking thirty two pills and supplements a day and drinking some pretty nasty stuff morning and night, but, hey, if it works I’m sticking with it. I’ve got six more months of that. 🤢

My next adventure (cause I’m sick of the word “journey”) is getting umbilical stems cells in my neck and ankle. If I can get rid of the pain in them, I think I can live with the rest.

I have a consultation on October 29 and I get my shots on November 1. It’s a longer healing time but very worth it.

If anyone out there that reads this and even THINKS they may have Lyme, I want to help. I consider myself an expert at this point and I’ll answer any questions I can. My  email is catfishlil101@gmail.com. If you are in a club or just have a group of people, I will come speak. This has been the worst year so far for ticks and it will touch so many lives. It changed mine entirely so let me emphasize, if you have found a tick on you, please get twenty days of doxycycline and you will be alright. Three years went by before I got a correct diagnosis and as my LA Dr told me, “Every organ in my body has been damaged.”

 

It has been one week and three days since ACT. Wow! Infusio warns you about feeling bad for a couple of weeks after ACT, but I underestimated “bad”! It has truly been awful. I’ve been in so much pain it fills like I’m starting all over again.and with the pain comes the depression and the emotion. One minute I’m ok and the next I’m in the depths of despair. I’m trying to hold on very tight to reality but sometimes it gets the better of me. It’s like my mind just can’t understand that this is the healing process and it’s not going to last forever. I’ve been married to Henry Earl for twelve and a half years and I’ve been sick for twelve! I feel so bad for him. I feel bad for my children and grandchildren because I can’t just get up and go see them. They are good at coming to see me though and I’m very thankful for that.

I’m going to Scotland at the end of the month. I know that sounds crazy because it sounds crazy to me! My friend, Joellyn, asked me over a year ago before I even knew about stem cells. Her ancestors are from there and she said she didn’t want anyone else but me to go with her. I’ve tried to give her many outs but she repeatedly says no. I’ve done a lot of arranging. Wheelchairs at airports and hotel. We’ll be on the Royal Scotsman train for four days. That ought to be interesting with my lack of balance. 😂 We arranged a private driver for tour of Edinburgh and the countryside. So all in all, it should be a fairly easy trip. 🤞🏼🤞🏼 It sure has given me something to look forward to!

I got in my pool for the first time this year two days ago and it felt like heaven. All the joint pressure goes away, I can move, and it’s the only time I feel kinda like my old self again. I turn on my music and dance around and it is pure joy! It also helps, of course. I just don’t let myself think about Lyme; I just relax.

Speaking of old self, I think that’s been the worst thing about this disease. It is so debilitating that you literally lose everything that made you you. It was very scary going down that rabbit hole and becoming an entirely different person. Now that I have a chance to get well, it scares me that I won’t be able to find “me” again, (if that makes sense). I know I’ll never be the same again. I hope I’ll be a better version of myself. I know I’ll be more compassionate. Maybe that’s God’s lesson to me. I’ve become so reclusive, which is really abnormal. I hope that changes. I just don’t know. One day at a time. And for the two friends that come to see me often, God bless you! (You know who you are) I may not feel good but y’all make me laugh and that’s a powerful healer.

I don’t want to sound pitiful in this post, because I still believe in stem cells and their healing power. I’ll just be glad when, in a year or eighteen months, I can post on here that I am well. That will be a glorious day and I’ll have a party.

Thank all of you who have sent their strength to push me on. I can’t tell you how much it helps. I hope people with Lyme are reading these and know that there is another glimmer of hope on the horizon. Stem cells are the bomb!!! 😁

Four sticks today but in a much better frame of mind. My last two IVs, saying sad goodbyes to some fine folks that know exactly what I’m going thru, and then home tomorrow!!! It’s strange how attached you get to people who are feeling your pain. I had one single mom who was in tears yesterday so H E and I put on the H E and Lil show and got her laughing. I’ll probably never be out here again but there are people here I will never forget!

Got me on the third try today. Yaaaa! I’ll be here all day today. They’ve drawn 90 ml of blood and I’m waiting for it to be processed (2 1/2 hours), then they put in back through my IV and I’m good to go for the day! As you can see, I’m wearing my good luck charms….my Daddy Long’s wedding ring, my Aunt Jent’s crest ring and the panda my second husband gave me. Things are good!