21st and 22nd Treatment

It was actually a good couple days at the clinic. The receptionist said I looked pretty good. I didn't handle my IV well but I DID get my bloodwork back! Vitamin D is low and my iron is VERY LOW! My hemoglobin is ok but my other 3 levels are completely tanked JUST as I suspected. It's so funny when bad test results are such a good thing! So I am on iron supplements. I also learned my red blood cells are small. Not a good thing so hopefully the iron will help. The nurse practioner was so great and helped me so much and answered so many of my questions. We stayed in my friend's cousin's basement that night because we could not afford a hotel and it was such a last minute blessing! Today I felt ok. I was always happy to visit with my Lyme friends. I had a different IV bag today. I laid on a magnet bed, too, and one of the sweet members of the staff answered a lot of questions I had about my gut. I refilled supplements and dumped a giant chunk of money for a package of ten more treatments. They were so sweet even though I was paying with four different credit cards. One odd improvement I have noticed today is I am laughing louder? I'm hoping these next ten treatments plus my boosted iron will get me better faster. I'd like to do 4 treatments in a row sometime next month, too, if I can get it to work out with everyone. 

Financial Frustration

This is a venting post so forgive me for lacking my usual positivity. I hope I don't offend anyone, either. So, as my finances deplete from Lyme treatments, I try to think of what I can possibly do to help pay for them. I've had incredible friends and neighbors and family members, as well as my church, help me IMMENSLY, and I HATE that so much help only goes so far. I've had 3 GoFundMe pages and have cut down on SO many things in life and again, it's still not enough. I want to have a job so bad. I love working. My last job was my DREAM job and I was completely DEVASTATED to leave it. I keep thinking of ways I could earn money, but I am so beyond worthless. I can't drive, and can't move freely, my brain can't learn new things, I could have a Lyme flare at any moment, I'm not well enough to take care of kids, etc. I tried to get money from my health insurance company but they deemed my Lyme Disease test MEDICALLY UNNECESSARY!!!! I hate so badly that I have to suffer more than I already do because society and the medical world do not understand Lyme! My husband has been working as much overtime as he can and its still not enough. We have critical illness insurance but they need certain test results which the medical world does not have the capability of providing! I'm now contemplating meeting with a disability lawyer but again, what are the odds that he or the government will understand Lyme enough to help me collect it. And why is it that people can drink and smoke and eat their way to cancer, heart disease, and diabetes and collect all the disability they want on top of insurance paying for their treatments!!! I am eating the cleanest diet in the world, I have never smoke or drank in my entire life, and the LAST thing I want to do is sit on my couch bumming off the government! Everything about Lyme is so screwed up. I have 115 symptoms, and no way of getting all the help I need as often as I need it because of the CDC and everyone else that makes those of us with Lyme suffer in the dark. It is so unethical and beyond frustrating. Ok, vent over.

Supplements

So many supplements, so little time. This isn't even all of them. I'm missing a few. I just got a ton of new ones and I'm slowly starting to take them one by one. Lyme affects so many parts of the body!

19th & 20th Treatment

Monday I felt horrible. I did not handle my IV well. The whole week has been horrible with all symptoms returning. I didn't handle sauna well, either. On Tuesday I had my 3rd evaluation and Dr J said my blood looked better, although it didn't look like it to me, and I feel so much worse. I did a foot detox because I feel like it helps, and Dr J loaded me up with like 6 or 7 new supplements on top of the 6 or 7 I'm already taking. It was very disheartening because I feel like I already take too many. The new ones are too big to swallow so I have no idea what I'm going to do. My mind has not been normal lately, either. My mood swings are so abnormal. My dreams and thoughts are alarmingly screwy lately. I was fine this afternoon and completely lost it this evening. I've heard of Lyme Rage, but what do I do about it? Especially when I have PMDD. I swear my hormones and seratonin are completely wack. I wish I could talk to J more but he is always so busy and I don't want to take him away from so many other patients who seem so much worse than me. I think I'm the youngest patient in the room most days. I love all my friends in that room. I need to remember to say prayers for all of them. There's people from Massachusetts, Montana, Washington, Arizona, Texas, Utah, Idaho, etc. Anyway, I also asked them to draw blood for me at the clinic 'cause I hadn't in a while. I did an iron test and CBC and a bunch of other things. I want to test more. I am stressed. I try not to be but this is all so expensive with no help. I need disability. Well, I shouldn't say no help. My husband and mom and my grandma and her nephew have helped tremendously. Our church has helped us, too. But I don't know how much longer they can, and I have such a long way to go.

Juiced Greens

My Chiropractor's Trainer/Nutritionist juices greens for me and I wanted to list what is in them. She just happened to make this drink for her clients and it just happens to be perfect for Lymies:

Celery

Spinach

Kale

Chard

Broccoli

Cucumber

Lemon Juice

Blueberries

Cherries

Coconut oil

Grape Seed oil

Avacado Oil

Stevia

I also found a restaurant by the clinic that juices, too! They do one with green apples, spinach, celery, cucumber, ginger, and lemon. 

17th & 18th Treatment

I love talking to my fellow Lymies at the clinic. I have been more social, and have felt maternal toward new patients. Treatments went ok, but I am REALLY starting to think my iron is low. Something is different and something is wrong. My skin feels like I have slivers or little pieces of glass on it. It actually feels like I have insulation all over my skin. I have to just be calm and breathe through it and accept it. Otherwise I would probably flip out. The drive home was nasty in 30-60mph winds. It was so dusty! Spring weather is unpleasant to travel in, but it's definitely better than winter.

Lysosomal Vitamin C

Well, I took the C, and I Herxed. The left side of my body flared. It wasn't really a pain Herx, but a neuro one. I stuttered and had serious motion sickness and dizziness among more of my usual symptoms. I think it did help me get over my cold, though. I've noticed stress (good and bad) causes flares, too. I can't have any kind of abnormal emotional stimulation. I find if I get emotionally involved in music or a movie, I malfunction! So I have to stay away from "feelings", good and bad. At least that's what it feels like. It's depressing but I don't react to stimulus normally at all. I will say I have had energy for my son's birthday this week, but I was so exhausted from it that I ended up napping. I never nap because my body or my brain makes me feel like I'm not "allowed" to fall asleep. I jump awake or I am so tense and on edge for no reason that I can't calm down enough to relax. I feel like I need to be on alert at all seconds for all the symptoms that pop up at any moment. It's a torturous state to be in, but I'm working on it.

15th & 16th Treatment

I have SUCH a horrible head cold! I went into the clinic this week as miserable as can be. I had 2 IV bags on Monday and was feeling that awful Herx feeling after ontop of the cold. 

On Tuesday I had 3 bags and did a foot detox. I was more chatty with the patients and was given a bottle of Lypo C, which I had read SO much about and heard SO much about. The receptionist just suggest I take it for my cold, but I heard everyone was taking it for Lyme. I heard you can Herx so bad from it so I guess we'll see tomorrow when I take my first teaspoon. One patient today found out her iron was low and I feel like I need to get mine checked. I will ask next time.

I am now back home with this horrible cold that doesn't seem to be getting better or worse. My arms and hands and legs feel so strange and awful and I have no appetite. My eyes have been burning really bad lately, too. I will say I have been eating less and it has been helping with the suffocating burps. 

Cranial Sacral Therapy

So I went for my first Cranial Sacral Massage yesterday and I woke up this morning in a full blown Herx. My left side of my face is numb (but not Bells Palsy), and my heart and lungs are having a really hard time. I'm so, SO weak (wobbly legs, exhausted) and my legs continue to burn. My mental/emotional state has not been good the past few days, either. I feel twitchy and confused. I feel like words and descriptions don't do justice as to how I'm feeling. I wish I could type my actual feelings instead of words about my feelings. Words just make everything sound trivial because there really are no good words to describe how Lyme makes you feel. Hopefully Infrared Sauna will help me some. But I do think the CS Therapy definitely angered the Lyme, and anything that angers Lyme is considered good. 

Guess what she has!