Hey everyone! It has been a really busy month, so I apologize for not giving an update!
I had a great milestone this month that I am so proud of, and of course have had my downfalls. It happens. I am looking at the silver linings though, Kimmiecakes kicked ass.
I had a visit with Dr S and it was decided that I needed to take a break on my Bartonella herbal treatments. I was told to take a week break, and use a much lower dose to start out and work myself back up.
I haven’t started back up on any Bartonella treatment. Hopefully he won’t be mad at my next appointment but I know my own body and I think I still need a rest.
I don’t know if I have bugs stirring at the moment and a pocket has come out with these nasty bugs in my head, or because I am completely overdoing it.
If you read my last post (umm, you should!), I shared that I had figured it was only an herbal that was given to me, and ended up being a mess.
I of course didn’t listen once again with my next “action plan” of the month. But I will get to that later.
Now, let’s talk about poop. Haha. Whatever, we all do it. Put your lunch down if you are continuing reading.:0
I have been dealing with the complete opposite of my past issues of running to the toilet. My legs work much better than I give credit for in this instance, although I have definitely had my share of oopsie poopsies LOL. Don’t judge. Shit happens, literally.
Sometimes it is about 3 or 4 days before I have an ummm…. movement. It is entirely normal when I do go, I am not straining in any way, I just plain don’t have to go for several days at a time. Zero cramps that are common with constipation.
I don’t really know if that is anything to worry about. I am assuming not, but Dr S is the king of poop questions so I am sure it will be brought up anyway during my next appointment.
I have noticed however, that after I eat and it doesn’t matter what it is, I often become very nauseated, have indigestion, am burpy, and by the end of the day I look like I am carrying twins.
I still have that lovely stabbing stomach pain that is slightly left and slightly upper of where my gallbladder would be.
And even grosser (I promised you all the good, the bad, the ugly, and the gross since day one of my blog LOL), I have had the WORST itchies and actually feeling crawling at bedtime on more than one occasion.
Dave’s believe and questioning on this topic is that wet farts can cause this issue and wondering if I was suffering with them. I just about died laughing.
Really Dave? I know that’s not the case at all. What the heck? Ew Dave. Just ew. Not the same thing. He also told me not to post this blog on Facebook but who are we kidding.
Also, I will clarify, I am not sitting there and scratching at it like a monkey or dragging my bum on the carpet like a dog, because that is definitely gross. And obviously uncomfortable. I just take my sleeping pills and ignore it.
From lots of research, as you know I am the Google Queen, that symptom is an extremely common sign that you are carrying parasites and I am thinking I really need to do another parasite cleanse. It has been a year.
My last one I found all sorts of critters! Let’s continue with the gross, shall we?!
There was white spaghetti of assorted sizes, some as big as 4 or 5 inches!!! I am unsure of what type of worms they were but I also had lots and lots of flukes. Flukes kind of look like white rice.
Parasites can cause an array of problems other than my embarrassing issue.
Once again, there are so many symptoms that can overlap Lyme.
And! It is very likely everyone does have parasites in their body but will never show any symptoms. When your immune system is not working properly, it might become problematic for you.
I should also note, if you are tested for parasites with a stool sample, it can be negative even though you are riddled with them, it just means none came out when you gave your sample.
Let’s get to some information about parasites!
Some of the many causes of parasites are: uncooked meats, lake water, sanitation of your food and water, fruits or veggies can carry them, cleaning your kitty box and one of the biggest tough one for me.
You can indeed get parasites from your pets. Yeah.. I’ll admit, I love kisses from my fur kids. We even have our “goodnight kiss” routine when Dave and I tell them it is bedtime.
I always say, “Gimme a kiss!” to my 3 dogs, and they will give me a smooch when we tuck them in. I wouldn’t be able to give that up realistically. I know some are so anti- dog but that is just going to be the way it is going to be.
Parasites can also infect you by walking barefoot on infected soil, tile, etc. ! So in a nutshell, everyday living.
Symptoms of having parasites include but are not limited to”
-IBS symptoms – gas, bloating, diarrhea, constipation, and any sort of digestional distress.
-Pain in muscles or joints or aching
– Fatigue, exhaustion
-Mood changes such as anxiety, paranoia, depression, hallucinations, and can lead to many other mood disorders
-Not feeling full after your meals
-Mineral deficiencies (iron is common)
-Skin irritations or rashes
-Weight loss or gain
-Vomiting or nausea
-Abdominal pain or tenderness
That’s just a few things on the list. There are so many more. And don’t forget the obvious, visually seeing a worm passed in your stool.
Common parasites include: tapeworms, hook worms , flukes, pinworms, whipworms, and giardia.
I am going to quickly rattle off some naturals that help with parasites. DISCLAIMER: ALWAYS CONSULT WITH YOUR DOCTOR BEFORE TAKING ANYTHING.
Wormwood, black walnut, cloves and garlic are a couple that come to mind. There are so many different naturals that can help. Reiterating once again, seek medical advice before trying something new, even with supplements.
So, needless to say, I will be ordering a cleanse this week and get that all taken care of.. Gag. Plus, I am thinking (hoping at least) that it will help get rid of some of my bloating.
I twisted my ankle a doosy last month and it kind of put a damper on being more active for a bit. I wasn’t too worried about it other than the fact the fluid didn’t seem to want to go away. It was rather squishy. About two weeks after it happened, I did begin to worry.
The inside of my leg was turning very black and blue, and I began getting super attractive varicose veins. My calf was swollen over a half an inch compared to my other leg.
It was massage day, and Gayle was pretty concerned and didn’t even want to touch that leg. I have a history with clotting, I have Factor V Leiden as well as vascular issues, and DVT was a concern. She told me I really should go to the hospital, and after my appointment I headed off to the ER.
I will tell you. You are treated SO MUCH DIFFERENTLY if you do not mention Lyme. Practically having the hospital as my second home, they already had my med list handy.
The doctor asked about why I had taken so many antibiotics, and I simply told him I HAD Lyme. I really didn’t want to be in there, period, and this wasn’t really a Lyme issue, so you have to pick your battles. Sorry folks. It wasn’t really a time to advocate. That is unlike me and I know I suck but I just wanted to get er’ done and get the heck out of there.
They saw the bruising in my leg, how swollen it was, and I was running a temperature yet again of 100 (fevers can accompany DVT), and they rushed me in to get an ultrasound.
He then wanted to do an x-ray of my ankle, as it was kind of gross looking even after two weeks. Agreed?
The doctor came back in and told me my leg was okay, no DVT, and he believed it was because of my vascular issues, and the fact that I was putting so much pressure on the inside of my leg because of the sprain.
I didn’t have any fractures or breaks either! Good news! I did however tear a ligament and had tendonitis. I kind of knew that anyways, but I had a lot of piece of mind knowing there was nothing wrong with the inside of my leg.
I wore an ankle brace, and have been using an abundance of essential oils on my legs and ankle which seemed to help a lot with the swelling and bruising. I kind of made a concoction in an all natural moisturizer: frankinsence, lemon, peppermint, lavender, and clove.
A lot of my new supplements haven’t seemed to make much of a difference for me. I am kind of bummed. You can’t knock it unless you try it though. I am working on my adrenals, and trying to get any sort of energy back. Adrenal complex is supposed to be somewhat “stimulating” and also is supposed to help with POTS. I have also continued working on mitochondrial dysfunction.
One of the thoughts of my appointment with Dr S was to wean myself off of some of my neuro meds. It makes sense, even though it isn’t the number one cause of my fatigue, things that calm your nerves are going to make you less energetic and a bit more tired.
Okay. I will share this experience, I really was debating it, but I am real.
This incident happened BEFORE I even started weaning off of the Neurontin, the choice we made together. This is the very first neuro drug I was put on nearly 4 years ago to help with my severe tics.
As my followers know, I often sleep my life away. Sometimes 14-15 hours at a time. You have no friggin clue what tired is unless you have a debilitating chronic illness. Never tell me you are tired from the weather or such and such or I will want to throat punch you. Okay, back to my story.
I have driven throughout this entire journey. I am not an asshole and if I don’t feel well or have an aura of any kind, I will sit on the side of the road. I pretty much allow myself a 10-15 minute radius from my house in driving distance.
I have spent countless hours sitting in a parking lot five minutes from my house because I knew I was not safe to drive. I have had incidences in which I have forgotten where I was and ended up panicking, I have had days that I wanted to make it home so bad I threw up on myself while driving home. I just did not want to stop.
My scary moment. I was on my way home from work, out of nowhere, I fell asleep for a split second. It wasn’t like I was nodding off in exhaustion, I just had a very quick moment.
There was no cars around at that very second and I actually stayed in the right spot, but even worse, all flustered, I turned at a stop sign, not looking whatsoever and made my turn.
Nothing like this has ever happened before, but I am now I am definitely much more wary. I have been taking the time to take as much sleep as possible, and at the moment I have made sure I don’t have my keys and rely on Dave even more than I already do.
Some of my meds were a big hell no, not happening on the idea of tapering off of them. Neurontin (I will not share the dose for medical reasons for you all, once again clarifying I am not a doctor and do not offer medical advice), I have been taking a massive dose for a long time.
I had weaned myself down from my even higher dose in the past, of course very slowly. Well, this time, I rushed things, and am still paying the price.
One of the first things I noticed was my mind was not in the right place. I was feeling beyond depressed, agitated, anxious, and I have been hallucinating more and more at night . It was certainly a few very long days. My mind has been beginning to come back to a better place.
Since I have tapered down a bit, my tics have been appearing more. Honestly, I don’t care about the tics all that much. It is the head games are downright terrible. At least I knew those were temporary.
I have slammed my hands on the desk at work with my thriller dance tics I am all too familiar with. I have gotten stuttery, mumbly, more foggy and shaky, and my tics seem to go crazy at night.
At least we make light of it. My body was going crazy the other night. Hands flailing, yelling, body jerking, my cringes that look like I am holding in a sneeze.
We were watching the Olympics when my body decided to have a party I had no control over. Dave was teasing me, telling me to simmer down and he knew I was excited, and jokingly told me root for our teams a bit more quietly with a “shh” motion with his finger to his lips.
I don’t think cutting down on this med has helped in any way, shape or form. I was hoping it would make me less tired but it hasn’t done anything to help. This will be something to discuss at my next appointment.
Generally in the afternoons I have been running fevers 100-101. I am wondering if the heat is killing off the bugs. I think just about everywhere in the country was a big giant sauna for a week or so.
Inside my house though, I am covered in blankets and wearing a hoodie. It has been hard to breathe the past few days or so, I have been getting “actual heart pain”, like my heart itself hurts, air hunger, and I wake up a sweaty mess. I have been extra cautious in the shower as my POTS symptoms are getting worse and I am trying to avoid anymore falls.
Damnit. I am hoping it was just the full moon. Just another thing to mention. I absolutely need to nip Babesia in the butt. It took me two years to see improvements. That scares me. It’ll be okay, I have faith that it will get it figured out.
Now the awesome!!!
Dave took me on a beach day. We left very early in the morning so we would have the beach to ourselves. My goal of that day: walk five. And guess what? I DID!!!!!!!!
That is amazing and I am so proud of myself. Five miles, folks. There is still missing puzzle pieces, tummy healing, etc, but I am getting much better. Just look at how happy I was. I still am.
My friend has even taken me out to a bar that has a nice patio overlooking the lake. It isn’t a rave or anything there, the place is rather quiet, but even being able to do things like that now is a good feeling. It is also good to be able to not have Dave (as much as I love him) have to join to be my babysitter. Girl time. 🙂
Also, I noticed on that “On that Day” app on Facebook, there was a picture from exactly three years ago and I have my most recent picture of me. Once again, you can see as clear as day how much I have improved. Wow!!!
That brings me to my Kimmiecakes advice of the day. Set goals for yourself, no matter how big or small and put your mind to it. A little tidbit, sharing your goals with others, posting on social media, or writing them down will make it much more likely that you will meet them.
Like I said, your goals don’t have to be to run a marathon. Have your goal be to walk to your mailbox and grab the mail, cook dinner. Anything. Baby goals, baby steps. Setting goals is positive motivation.
I guess I will wrap it up, this post was a novel and I know how hard it is for a lot of us Lymies to read this much. Hope you all have a fabulous weekend!
Annnndddd… Miss Olive says, “hi”!!
I have been ridiculously busy lately, especially with work. I have definitely been slacking on keeping up with my updates. I have positive news though! No news is good news, right?
I had an appointment with my favorite Lyme literate naturopath a few weeks ago. We are still trying to figure out my complex puzzle, and he believes a part of my issues I am facing is drug induced mitochondrial dysfunction, which is kind of our main focus now, along with working on my gut infection, and Bartonella, which has slowly begun to rear its ugly head yet again. Super sucky.
Backtracking… What is mitochondrial dysfunction you may ask? Well, I will do my darndest to explain it correctly. Google to the rescue!
Mitochondria are a big part of your energy production. A huge part. Whole systems can fail if these cells begin to die and it can affect your entire body and its organs.
Antibiotics can cause cell death to mitochondria, and being on enough antibiotics to kill a horse for nearly 4 years, it is likely that this is could be one of the culprits as to why I am still not fully better and very much a work in progress.
Mitochondrial issues very well overlap a lot of Lyme symptoms. It is nearly impossible to know what is what, but it is certainly worth giving this a shot having it be a main focus for awhile.
It was once believed that mitochondria could not come back, but over time they can replenish. Hooray! This may take a very long time, but this is positive that I will get my little energy cells back. So, more supplements of course.
It is insane that I am not even on treatment and I take upward of 60-70 pills a day. I guess it helps me with my daily water intake 😉 Silver linings.
Honestly, right now a lot of my supplements I am suppose to take three times a day, I have been taking two times a day. I am afraid my timing is off, and the ones with food, without food… I dunno, I don’t really feel like eating anything after midnight when I go to bed. I know that probably sounds bad and non-compliant of me, but I am trying to keep up with everything on a “timely basis”.
As for the Bartonella that is creeping back, I am just using an herbal now to try to keep it at bay so I don’t have to be on antibiotics and continue to heal my stomach.
I did hear possibly the very best thing ever during my appointment. Dr S. said to me, “I think this might take a long time but I’m pretty confident we can get you much better or fixed.”
Even being under the care of one of the top LLMD’s in the country, the goal has always been 80-85% functional and that was it for me. I was told that is all there would ever be.
Realistically, I know some things might not go away completely, but in the near 4 years of treatment I’ve never heard anything like that.
Way to go Dr S. for making sure I still have my butterflies, rainbows, and unicorns mentality! Yesssss!
I am still babying my stomach. It hasn’t been perfect, but it is certainly improving. I have been doing well with my diet and the bloated look is definitely beginning to improve. Every once in awhile, I break my own rules and eat something I know I shouldn’t, example, I stuffed my face with Chinese food last night. All the bad stuff that even on IVs I wouldn’t eat.
It was friggin delicious and sometimes I feel like you have to break the rules for the sake of sanity, but I can tell a huge difference in my energy level, my head hurts, and I am just plain foggy. Needless to say, tonight will be a salad and vegan chicken night. Time to jump back on the horse and get back on track.
Bartonella as I had mentioned has also been one of my issues lately. It generally messes with my head in a lot of ways. Paranoia, hallucinations, anxiety, OCD, and oh gosh do my feet hurt at night.
Dave, my wonderful husband, is a trooper and uses his knuckles full force on the soles of my feet to get the knots out at night.
Dr S gave me an herbal tincture called Houttunia, and I think it is infused with something (Samento perhaps?) Well, anywho, I completely underestimated this tincture.
I was told to take one drop, and slowly work myself up to 15 drops a day. Yeah. I made the assumption that starting at one drop was the “I’m a pussy” dose, and started with five-ish. I say five-ish because I kind of just squirted a guesstimate of five drops in my mouth.
Word of the wise: listen to your doctor. LOL
I ended up with stabbing stomach pain, all my Bartonella symptoms flared, I was completely wiped out. It quickly brought back all the the days I am so used to. Sitting in my car at the bank or grocery store parking lot, and having to drive home because there is just no way I would be able to get out of my car. Needless to say, I took a few day break and started SLOWLY, and I haven’t had any issues since. I am still flaring, but it is tolerable.
Clumsy me, I fell again and ended up with a big ol’ bruise on my leg. My house is a single story ranch, and our back porch has one step and another single step further back, of course when I went down I hit the one of two steps then tumbled. Oy vey.
It is super annoying when my legs just give out. I feel as if they are like “just kidding!”, and I go down like a sack of taters.
I had an appointment with my dermatologist for my heart scar. It turns out it is a keloid. It sounds like it isn’t worth a surgery as it can easily come back and worse. Plus I could have to cut everything out, so I would be left with a bigger even grosser scar. It kind of felt like he wanted to line his pockets with money, as I did a little research and found out many plastic surgeons would not cut it out for this very reason. Of course, it isn’t covered by insurance anyway.
Scars I personally feel are pretty badass and tell a story about you, but this one is kind of “icky”. Haha. I will just live with it.
He also offered steroid injections, but I don’t really think that is warranted either.
I know you aren’t suppose to take steroids with Lyme disease, but sometimes in certain cases you have to outweigh the good and bad in particular situations, and this certainly isn’t one of them. Totally not worth it.
Now onto the good. 🙂
I have had some great days. As I had mentioned, I have worked much more. A lot more. I kind of haven’t had a choice as things needed to be done, but have done really well on staying focused, with the small exception of a few days I had to leave out of frustration or pick and choose what I absolutely needed to get done for the day.
Those are the kind of days I swear at the quarterly government reports because I have a total brain fart and once I get frusterated, I get all flustered and I need to leave and come back to it later. I have done the same reports for going on 10 years, they used to be so easy peasy for me. They are, if I am not in a foggy trance.
I would consider myself much more normal at least visibly. My friends had a small barbeque, and you wouldn’t likely be able to tell I am sick in any way. I even did a little dancing!
I have been moving around more, using the pool for exercising. This made me quickly learn that not only my legs are out of shape, I have also lost all muscle strength in my arms. It’ll come back to me. The more I try to do, the more it will come back and I am hoping that I will be more functional.
I even made it to Home Depot the other day!! Not only is it a big store, the lighting is terrible for someone with a lot of light sensitivity.
After awhile I began to get really fuzzy and dizzy, but I did a lot of walking and dream shopping since there is just no way I can afford anything in there. Haha. I was able to stay until Dave got everything he needed and there was no emergency rush out to his truck. Phew.
Last time we went to a Lowe’s, Dave literally threw me on one of those rolling pallet things and took me out to his truck. I had completely collapsed. I must have been a sight for sore eyes as he wheeled me out of the store, while I was a hot mess laying on the pallet.
I conquered the trip this time, and I was there much longer. Things are never going to change unless I start getting back out there into the world. I would rather fail a few times (or a lot of times) and say I tried at least.
I did a big grocery shopping trip with Dave! We usually stick to the tiny store in our town, but we ventured out of town. I did great. No having to leave, no dizziness. We didn’t have to rush. It was awesome.
It wiped me out by the time I got home so I took a nap but look at what I am accomplishing! There is no doubt I am moving around much more.
This comes to an important point with all of this. Kimmiecakes rant of the day. I know some will probably take offense, and believe me I have been through hell and back, and it has kept me going and fighting.
Keep pushing. It may be hard, but doing just a little extra is great for the mind, and your body.
If you think about it, I have had years and years of doing absolutely nothing. A vegetable at one point, a wheelchair, not moving around at all. Muscles are definitely toast. Everything is weak and depleted.
I know it might come across as an asshole thing to say, but mind over matter it. Do something every single day. One little thing. Anything.
Even if it is sitting outside for awhile. Just an extra push. I have talked to sooo many Lyme patients over the years, and I can tell when there is night and day differences in attitudes it plays out in a link to their health.
It is kind of bizarre, but many a time, I see those who let this terrible disease consume them, eat them alive, and let it define them not heal. These are the people who just don’t see the silver linings in anything. There is ALWAYS silver linings.
You all have the power to do one little thing that will change your day. No matter how big or small, it is still an accomplishment. Give yourself credit with what you CAN do and focus on that. Push. Fight. Kick some ass!
Granted, this disease is ridiculously complex so there is so many things to consider, but I have seen those people are often the ones who stay sick.
Hell, I am a medical mystery as dubbed by all of my doctors, but just look, after over 25 years of infection I am finally starting to see some improvements. I got told some amazing news and I have such high hopes that this is not going to be forever. I think my body is beginning to want to heal itself. Turtles pace, but in the right direction.
Your mind is an important part of healing. Do not let this define you. I am a firm believer in that.
End rant. Or motivational speech? I don’t know, but it has been on my mind lately upon speaking with some current patients and it makes me cringe. We are all allowed a bad day or two, to be angry at the world, but I got into it trying to help someone look at the world in a new perspective and she just wasn’t feeling it. Oh well.
I hope it serves at least a few of you well! It is hot as Hades outside now, but have a seat in the shade, read a book, walk to your mailbox, sit at a table and prepare dinner (I did this for years!), take a bath, anything! We are all effected in different ways, so what you are able to do is likely different compared to someone else. Just do it J
P.S. I will give another update hopefully soon! I had yet another visit with Dr S and will have much more to share! I’m a little behind the times 😛 Happy Sunday.
Ahh! Miss Olive! I almost forgot about you. She is doing great, I even left her out for the first time to take a shower and she surrounded herself with toys.. caused no trouble! She’s 50 pounds now!!
This past month has been kind of bittersweet. It marked the three year anniversary being treated by one of the top LLMDs in the country. There was a tremendous amount of hope beginning this new step in my journey, yet the path has been less than easy.
I am nearly four years into treatment, and this path still isn’t easy (LOL), it has certainly taught me that patience is a virtue. Pshhh. Darn life lessons.
Anywho, my TimeHop on Facebook reminded me of the video I posted when I first started my blog exactly three years ago. It definitely left me reminiscing about the past.
Disclaimer: I am having a hell of a time figuring out the right words today. Google has been trying to lend a hand but I don’t know if it is working out so well or not. So, just bare with me and I am sure you can figure out what the hell I am saying haha.
Please check out my “About” video on the top of my page. You will see exactly where I started. Well, not where I started, as I had already been through about 8 or 9 months of treatment, but the starting point with this LLMD. * This is when you check out the video*
Once again, this will all make sense if you watch the video. Or I just sound like I am rambling. I sort of am. That’s okay though. It happens.
Without the help of my amazing doctors, I would not be where I am today. After discussing with Dr S, I was lead toward the diagnosis of Tourettes syndrome, as his research really brought out the flaws of my current neurologist. It was brought out from being sick, and can also be genetic, but it is so much better than it was and we have found my main “triggers”. The IV treatment and neurological medications have helped lessen this tremendously.
My other photo for that day was one evening that a best friend and Dave pushed me in my wheelchair so I could be a part of hanging out. Thumbs up, of course!!!!
I no longer need my chair or a lot of assistance, I still need to hold onto Dave once in awhile, or unless it is a super long walk with bright lights.
I have had since then had 11 months of aggressive IV and oral treatment after 5 months of IVs and a few months of orals alone with no success.
There has been so many bumps in the road (ok big ass potholes), but look how far I’ve come!
I know it is still a very long road, and now it is most of the time my struggles are invisible to others. Watching this video was a sombering reminder of how great I am versus how used to be.
All I can say and my piece of advice is, don’t ever forget those silver linings if you are in a similar boat. Look for anything positive, big or small, in your life or what your can do or accomplished.
I still love my life, and everyone who has been a part of it who loves and supports me has certainly made it so much easier.
Now we are back to 2016 and how life has been…
For awhile, I was really anxiety ridden. Even though it wasn’t really my deal, I get all flustered doing anything out of the ordinary. One of my best friends got married, and I was a bridesmaid. Dr S jokingly said to me, “what was she thinking?!” So, yeah. I was a bit worried.
The morning of, I did poorly. I was having unintentional blank stares and ticking while trying to get my hair and makeup all done. It was enough for one of the bridemaids and the bride to ask and make sure I was okay. What was I suppose to say? “Umm no, I am feeling like I need to curl up in a little ball on the floor?!” LOL Another bridemaid snuck into town and got me a protein drink as well. I have kind people in my life.
I pushed through, and someway, somehow pulled out of it. I did REALLY well!! It was really hard to stand there and take pictures, it was also hotter than Hades out, but I made it. I EVEN DANCED!!!!!
That is absolutely huge for me. That day was also the longest I have been on my feet in years. I am so proud of myself.
This really shows how things can really change from one part of the day to another having a chronic illness. I am so glad things turned out the way they did.
It was a beautiful day. I might have cried a bit during their ceremony, but at least it wasn’t an “ugly cry”. Haha. Tears of joy.
I’m on the very left side. Dave is on the very right side. Shows you how one can look perfectly normal and be sick, huh? We are all a great looking bunch. Never ever prettier than the bride though!
I did spend the next few days making up for it. Of course, I needed to catch up on my sleep, and a lot of my body kind of decided to hate me.
My calf muscles have been painful, and I keep getting edema in my feet and ankles. Making sure I stay hydrated and elevating my feet seems to help and it never stays, so I am not quite sure why.
The endometriosis pain is back. This time however, there has been some spotting. I almost forget girls get their periods. It’s been 8 months. 8 months that I haven’t missed.
For the past few weeks, Dave has gone grocery shopping alone a few times. That is usually our time to get me out of the house and get some exercise. A lot of times I try to go, and I make it most of the way, but I get the “time to go out to the car” from Dave, he hands me the keys and I wait until he is finished.
I have had a lot of days that I have been really cloudy and ticking. Days that I want to run some errands, and I sit in my car trying to collect myself and have enough oomph, and I end up going straight home. I just can’t do it, and it wouldn’t be safe.
There has also been a few night time scares. For those who do not regularly follow me (you should, I am awesome), I have POTS. Dave has no longer been babysitting me while I take a shower for awhile now, and I am now having some dizzy spells again. My body cannot regulate temperature whatsoever, and I think that doesn’t help any. I have had days in the past that Dave would help me out in the tub, he would tell me the water was incredibly hot, yet my body temperature would go down to the high 95’s, I would turn blue and he would have to warm me back up. Dr’s still don’t know why this happens to me.
I can feel it coming, well… most of the time, and I quickly turn the shower off and seek cover. Even if it is laying in the tub, on the bathroom floor, anything. I would prefer to not go down like a sack of potatoes.
I have also had some good moments though. Running errands, being on my feet more, doing some pool exercises, just trying to keep going.
I know I had Dave do some shopping and I have had some unsuccessful trips at the grocery store, but there has been days that I went all by myself, to two stores to get everything we needed! Dave and I even went to motorcycle week so I could get my Dad his early Father’s Day present, a tee shirt. It was busy and I did a decent amount of walking. Get those legs going!
I focus on the good. It keeps you going. No use in moping and wrapping your head with all the bad. It really isn’t a great motivator for healing.
I had mentioned and posted a picture of my Bartonella streak last time I wrote, and I am thinking I am having a flair. I am only like this is Bartonella is having a party in my brain…..
Okay. I have a confession to make. I had a super Lyme rage moment, I was not my finest ladylike self. This woman probably thought I was what is wrong with America today and I am an awful troubled youth. Oy.
I was sitting in the grocery store parking lot. Of course I was! I have to recoup from as much as picking up peppers and onions.
She swung car door open, hit my car, and began to walk away like she had done absolutely nothing wrong. I WAS IN THE CAR AND SAW HER!!!! It’s cool right? No. Not cool.
I then backed up my car and blocked her in the parking lot and had some words with her. It began with how disrespectful that was as I was sitting right there, and if I wasn’t around she should have left a note to every single cuss word, c bombs and f bombs flying for about a solid five minutes. Just imagine five minutes of being reamed at by some crazy girl with every swear and name calling in the book.
She simply said in the midst of my yelling, that I was near the white line (THE PARKING LOT WAS NEARLY EMPTY, PARK SOMEWHERE ELSE! I WASN’T BY THE WAY, AND THAT REALLY ISN’T RELEVANT WHEN YOU SLAM INTO SOMEONE’S CAR!!!)
All the while, when I was completely flipping out, calling her names, just having complete word vomit all over this idiotic woman.
Did I overreact? Perhaps. As you can see it is still a touchy subject. Haha.
But who the hell does that? I know I sure wouldn’t. By the way, my car was absolutely fine, I had her license plate written down in case, but there was a massive amount of navy blue paint on my passenger side rear door. Take that!
Here is a link that discusses Lyme rage in full:
You can read all about my jerkface moments, as this has not been the first, and I am sure it will not be the last. It will probably help a lot of you relate, and a great read for family members to understand this isn’t always “you” when these episodes happen.
I have some of my recent lab results back, and also had some tests done. I had my Vit B levels checked, and they were over 5,000/ Normal levels 200-900? Dr S said too much can cause adverse reactions. I want to be retested though to see if it was a fluke. I have been making sure my supplements don’t contain Vit B and I will mention getting the test redone at my next doctors appointment.
I have the feeling everything is just floating around and not being expelled nor absorbed. Hmmm..
I had to get a mammogram done, and t turns out I have some very fibrous tissue, and they found a small mass. They wanted to be safe, as I have a family history of breast cancer at a very young age, do I had an ultrasound done. Turns out, I have a fluid filled cyst, and a few smaller cysts in my breast, and that is what is causing the pain.
Of course, Miss Research right here, a lot of information contradicts itself. When to worry, what size is too big or too small, and it appears I am at the borderline range. Most of the time these go away on their own, and I have decided to wait it out a few months, see if there is still pain, and go from there. I believe they will just insert a tiny needle and get the fluid out. Easy peasy.
I will cross that road when I have to. It is nice to not have one more thing to add to my list of falling apart, although I was not entirely worried to begin with, as you don’t know until you have the results right in front of you, there is no point in freaking out.
On a good note, they also will have these images to compare to if I ever have another issue arise, and it will be a lot easier for the radiologist to distinguish any changes.
Well, that is about it everyone! Wishing you all a happy Friday!
Almost forgot, here is my routine picture of Olive, my precious sleeping beauty.
I’m here! Just slacking once again on my writing. Hmmm… I have written notes throughout this past half month to try to remember everything, so I wouldn’t bullshit you all. 🙂 I have had an appointment with my neurologist finally, and an appointment with Dr S today.
There has been some fairly decent days (for me anyways), ones that I have accomplished a few errands and helped Dave grocery shop. I have been trying to work on getting stronger, and have been starting to use my parents pool for a little physical therapy. Boy, I will tell ya.. I have always been focusing on my legs as the primary issue, but have totally forgotten about my arms. I have zero muscle left. Needless to say, I stayed in the kiddie end of the pool to get some exercise.
I do pay for trying to push myself badly. It generally takes a couple days to recover. I get beyond exhausted, foggy, and my tics come back. I still have to go back to the car and sit and wait, or go straight home even if I need something at the store. Oh, and my beautiful face come back. Lookin’ sexy, kinda?
No, probably not. Haha. I really need to do this though, I won’t get any strength back by sleeping my life away on the couch or curled in a ball covered in blankets watching TV. Gotta start somewhere! Even for this much, I am really proud of myself. The other day I even went to the store, picked out flowers at a farm, and planted them. Go me!
I have been sticking to my strict diet and working on my gut infection and my neuro stabilizing supplements. They were working a lot in the beginning, I have lost a few pounds and am much less bloaty, but it hasn’t improved any further. Dealing with the gut is a tough thing that takes time. I just gotta keep at it.
So weird. I wonder if Babs is acting up? This is the only picture I actually took, but I keep getting streaks on my tummy too. Those are almost more like straight red stretch marks. They go away within a day though. And, little blue veins poking out of my thighs.
I have been having a lot of anxiety at night. Paranoia. Every little thing on my mind eats away at me, and anything negative from the past replays in my mind over and over. Things that haven’t even happened yet play in my mind. I am in a wedding this weekend and I have anxiety about how I am going to feel, and I wish that I was more involved in helping out. Meds to help with sleep and essential oils aren’t doing the trick. It is really hindering a restorative sleep, and I am beginning to have nightmares and moving around a lot in my sleep. A few weeks ago, I was asleep, punching my headboard to my bed. I have been all over the place, tossing and turning. It would probably help to get to a better place with sleep again and I would not feel so yucky.
I had my neurology appointment last week. I had to joke as soon as I got into the office. It is bright as hell in there, which is kind of a neurologically impaired person’s nightmare. Really? Dim those suckers down. I can’t be the only person with light sensitivity that comes through that door. Oy. The good in that (I will put a positive spin on it), is that they will see exactly what those lights do to you. It is one of those things, generally when you walk into a doctors office to discuss a problem or symptom, it just disappears. Poof! When you get home, it is right back. And you just look like an idiot or a faker.
I suppose he probably isn’t reading this, so I will be honest with you. I will say, he is REALLY a nice guy, and I do like him. There is a BUT though. I will put it this way. He was probably the very bottom of his graduating class and snuck by. I saw him a few years back, not noticing anything because at that point I was petty much a vegetable. A twitchy, yelling vegetable. I had no idea what the hell was going on around me.
Example one. He referred to his notes from my previous appointment, and of course he remembered me. I am kind of one of those people that is hard to forget. Obnoxiously yelling, flailing my arms, finger snapping, clapping like a friggin harbor seal. Yup. Not too hard to forget. He had mentioned Tourrette’s, even though he understood the cause was likely my tick borne infections, and said that because I was not swearing it wasn’t quite but very close to Tourrette’s, or borderline?
I can’t remember the exact wording… I do know that an extremely small percentage of Tourrette’s patients actually do swear, so I kind of bit my tongue. This is not correct information for a diagnosis based on guidelines, and telling Dr S this, he was kind of disappointed because sometimes in these situations it is good to actually get something down on paper by the neurologist.
Example two. I had several notes prepared walking, well, waddling though the door, with everything I wanted to discuss. My foot and leg numbness was a big priority. What is permanent damage? Does he think there is permanent damage? Just something I have to deal with or something he thinks will get better? Any thoughts?
He gave me an exam. Not ONCE did he test the bottom of my feet for any response, the sides of my feet, reflexes in my feet. I even suggested it. DO ITTTTT. I would think, common sense, if this is the number one complaint of the patient, it would be done. The only thing that was done in relative to my feet was he used something that kind of looked like a golf tee so it was kind of sharp at the end, made sure I was unable to see what he was doing, and told me to tell him when I could feel it. He did it a few times. Every time I answered, “right there!” or “now!”, it was midway up my calf. I really thought that he was starting out there and going downward. Nope. Upward. There was a whole lot of nada until halfway up my calf.
At the end, he did tell me that he wanted to follow up with me in a few months, and wanted some of my blood work to be redone. The big positive: it sounds like he is going to set up an electrical conductivity test to see how my feet and legs do. Which was huge. Another positive was that he was willing to refill my lamictal, which I cannot get here. One less thing to think about.
He also changed the wording on my lamictal as it stated that I have epilepsy, which I do not. He said that it was kind of a red flag, so changing it is better. Driving and whatnot. I told him the truth that I do drive, even though I am limited, like a 10-15 minute radios each way and that is my maximum. I was worried he was going to pull my license when he saw my list of meds. He didn’t though, thank god. I already feel like I have lost enough independence with this disease.
I was hoping for the epilepsy testing though, to see if the drugs I am taking are the right choice for me as it would give me that answer. I guess I can’t get everything I want. At least it sounds like I will be getting that nerve test done and my lamictal refilled, which were kind of the top priorities.
I had my appointment with Dr S today. It was a really easy, straight to the point appointment, really. We decided it was still best to not be on antibiotics. They really serve no benefit to me at the moment, and my stomach really isn’t fully healed.
He was really happy and encouraging that I am working on getting stronger. He wants to control the neurological issues more, and have that be my primary focus. Inflammation and more neurological stabilizing supplements! Also, working on the liver to make all these things work better and I absorb everything better.
I have been procrastinating for some time now on an issue, and Dave has gotten pretty mad and pushing me to call. I have about a dime-ish sized lump in my breast. It really near your armpits where your lymph nodes would be, but it is uncomfortable. I guess I need to take it more seriously. I honestly just hate dealing with doctors. In my family history, my grandmother died a very young death, before 30 of breast cancer. I am nearly positive it isn’t the issue, but a mammogram appointment has been set up for me.
Also, I guess it is NOT normal for your heart implant removal scar (I had it removed in January) to have a keloid looking scar and certainly not normal to have black specks in the rest of my scar, and the left side not looking like it closed all the way. It did, but it kind of looks like there is a hole. Sorry for the super crappy picture, it is really hard to take a picture of your chest with a full sized macbook. Haha. Just to give a very basic idea.
Dermatologist appointment in the works. Super duper. I didn’t even bring this issue up, he saw it and said I really should get it looked at and possibly biopsied. Especially having black dots in it. Who knows, maybe they will cut it all out and I will have an even more badass scar. Woot woot! Just another thing to put in my calendar.
My electrophysiologist called for a follow up appointment as well. The prescription he gave me, the tweaked dosage, and his game plan of the recumbent bike, lots of water, salt and simple leg exercises seems to have helped, so I kind of put it on the back burner for now. It is so busy with work for my Dad and Dave, who would be the ones who would have to give me a ride.
My birthday was on Friday. 29! I plan on being 29 for the next few years. We didn’t really celebrate, the weekend before however, Dave did take me to the ocean for lunch, and I was having a bad day, but still was able to do a small walk on the beach. I wish I could have done more, but I wouldn’t have made it back lol. I always feel like a new person and completely relaxed after spending some time at my favorite beach in Wells, Maine.
That’s my update for now! Wishing you all a happy Wednesday!
Of course, a picture of Miss Olive, sleeping with her caterpillar. 🙂
Wow! It has been a month since my last update. Hmm. To be fair, I been trying to keep up with work, and by afternoon I am done for the day and have been sleeping or have been a big ol’ couch potato.
I have officially been off of all antibiotics for 8 weeks now. Yup, as my title says, it has been one long vacation for sure.
I have been working hard on getting rid of my gut and intestinal infection. It has been especially difficult keeping up with a proper diet (I am on the FODMAPS diet) having so many food intolerances and also trying to go the vegan route.
For several weeks I found myself absolutely STARVING. Some of this is the bugs screaming, “feed me, feed me!!”, but another big part of it is not getting enough protein no longer eating meats or eggs.
It was pretty gross. Stir fries with veggies have been a staple lately. I would have about 3 bowls, then make a heaping plate of vegan nachos… and embarrassingly enough eat a jar of peanut butter as soon as Dave went to bed. I didn’t need any judgment. Haha.
Oddly enough, I have been losing a lot of inches. My size 11 pants are now down to a 7. At least my pants that were in totes in my closet are now back in use.
There have been some better days and some not so good days. Yesterday I was able to work for a couple hours, then I made a long drive.. okay well, 15 minutes is far for me to go to my bridesmaid dress fitting.
I went to the gas station and pumped my own gas, and stood at the town hall in line to get my car registered. Then, I went to the store to pick up a few things and cooked dinner. Wow! That was a very good day for me.
There has also been several days I tried to tackling too much. On my one Sunday off this month, I went to the grocery store in the morning, but ending up shaking uncontrollably for hours until I finally fell asleep.
For the next several days I paid for trying to do something “normal”. I always tend to end up with numb legs and feet, begin to be stutter and be my classic Tourrettesy self. Blah.
This is what overdoing it (basic tasks of someone who is not chronically ill looks like). I don’t think I will make the cut for America’s Next Top Model. Haha. Oh well. A face only a mother could love.
Unfortunately I have been having a hard time with endometriosis pain again. It has lessened quite a bit, but I have had mornings that I have been in so much pain that I could not stop dry heaving and began to black out.
No aspirin or ibuprofen touches this pain. I don’t have any sort of pain management doctor nor do I have any stronger medications so I just have to deal with it at the moment.
There has been a few negative events this month. I occasionally have to wear sunglasses inside, and it was one of those days at the post office, and a man felt the need to approach me, (he wasn’t even near me!) and ask, “Do you think you are a celebrity with those sunglasses on?”.
I was in no mood that morning. I had a very hard time getting ready, it was one of those brush your hair and sit, brush your teeth and sit kind of mornings. I made it halfway to work then had to go back home as I was a dummy and forgot my meds as I was just plain out of it.
I said to him, “I have seizures, how about you mind your own fucking business!!”
Okay, I might have been able to handle that a little better, but it was a Lyme rage moment.
This type of thing reminds me of when my tics were absolutely out of control and strangers would approach me asking what is wrong with me.
Really? I don’t go up to people in a wheelchair and ask why they can’t just get up and walk. People have no manners.
With the tics I always just said I have Tourettes. I actually do from the neurology guidelines, and when they would walk away, I would give them a big ” FA FA FA FUCK YOU! ” Haha.
For Lyme disease Awareness Month, I set up a proposal to discuss Lyme disease with the students at the local high school. I had hopes of perhaps doing a presentation with their environmental science or regular science class.
My reply via email was a polite way of saying that they were filled up for the rest of the year and have a more important ciriculum to fill… like cutting up worms and frogs. He told me to try again next year.
You know what though? I am really proud of myself for putting myself out there, and putting together and doing a presentation in the state that I am in would have been beyond difficult for me, but I really wanted to try to teach the kids the severity of the disease, prevention, the proper way to remove a tick, what to do if you are bit, facts. Anything and everything that could possibly help bring knowledge and awareness. Guess the worms win.
Exhaustion has been a huge problem of mine, and the past few times I have seen my massage therapist, she told me my glands were really swollen. I figured it was detoxing all the bad stuff out of my stomach, especially considering my face is showing the signs of detox. I look like a teenager going through puberty. I’ll get to the swollen glands in a bit.. but the great news is my circulation has been improved this past month. Hooray!
Last week I had an appointment with my favorite Lyme literate naturopath, Dr S. So here is where I stand, and the game plan for right now..
At the moment, we both feel that it is best to work on the gut infection and trying to get the neurological and adrenal stuff balanced out more and have these issues better managed.
I don’t know if I had already mentioned in a previous post, my blood sugar is being funny and keeps dropping when it really shouldn’t be. Low blood sugar is a big no-no for those with a lot of neurological issues. So, I will keep a piece of fruit or something handy. Bizarre though, As my diet consists of carbs especially during treatment to avoid some of the nausea. Medical mystery once again.
He did give me colloidal silver for the meantime, to try to not get any worse. Just a “keep things at bay” thing to take. I think once I get back on track, perhaps amoxacillan and herbals are going to be my next step. I need to take it easy. I don’t really want to go back downhill to where I am, I want to move forward.
Lucky me, I HAVE MONO AGAIN!!!!!! Super. I was trying to blame the exhaustion, constant napping, and being zombie-like on not having my methylcobalamin injections and my swollen glands on getting rid of all the toxins in my body.
Nope. Well, it is going to take awhile to get back on track, but I am being optimistic that maybe once this all clears I will be a lot better and even have made progress by not even treating. Let’s hope!
I guess lastly, I felt terrible yesterday. I had finished tying Olive up outside and all of a sudden my right leg said, “JUST KIDDING!!!” I fell down the steps and nearly half of my body landed on Olive, the other half part of the step went into my back, bruised knee, muscles pulled. I’m okay, just sore, but I wanted to cry for Olive. She didn’t yelp, which would have made me a crying mess. She did have this look, with her eyes as wide as saucers like, “Mommy? What did I do? I didn’t get into the trash or be a bad girl?”
After awhile of not being able to get myself up from falling, my doggie crew came to the rescue. I think Olive realized it was an accident (I still feel like an asshole even though it isn’t really my fault I lost control of a limb), she came over with a wiggle butt and giving me kisses, as well as Cooper.
Chance always knows as he has seen me at my absolute worst, much more than the other two, that something is wrong. He just rests his head on my body and lays down. And that is exactly what he did. He is my absolute love and one of my rocks. I am sure many of you have a furbaby that keeps you going. J
Honestly, it has taken me about a week to write this single blog entry to cover an entire month, so I apologize if it seems like I am all over the place. I probably am a little bit. I probably should have given the warning at the beginning of my entry. Whoops.
So, that is what has been happening in the world of Kimmiecakes. I will continue to press on, and I will do my darndest to give an update sooner. I have a neurology appointment and another appointment with Dr S all set up, so let’s see how this all goes!
I have been sharing pictures of Miss Olive but figured I would show a picture of my little family as it puts a smile on my face. The question is, where am I supposed to sleep? LOL
It has been a rough week or so. I’m going to do my best to not be all over the place and make sense in my writing today. This is about as good as it is going to get.
The day before my appointment with Dr S I had a mini meltdown. Okay, it was a big meltdown but I was able to keep most of it inside.
It all started with getting the IV process going. Vitamin C, Glutathione, ringers, Myer’s cocktails. It would have been a great thing to add to my regiments and it was recommended to incorporate these treatments for me.
I had the thumbs up and good to go to do them at home, then within about three hours, I got a phone call that they changed their minds and got a big fat “no”.
I asked for an explanation and they simply told me they decided to not do it for me. I had explained I had done some of these treatments at home before, and I was told they won’t do it. I was told they changed their mind. What the fudge?!
I investigated further.The true reasoning? Aha! This particular doctor that was all thumbs up, ready to go, and let’s help get this girl better “communicated” with Dr. N, another naturopath that I used to see in conjunction with Dr S and my neurologist when I had my 5 months of rocephin IVs. I guess she still has hard feelings for me leaving her as a patient.
So, she took it upon herself to butt in to make sure I did not get these treatments by communicating with some of the other holistic and naturopathic doctors in the area as well to make sure they would not help me.
I am basically on the “do not fly” list for help at the moment. Once again, thanks for being mature, Dr N .*Rolls eyes*.
She is pretty egotistical, and even has a little webpage (well, at least she did at one point), basically sharing how she is the Lyme guru, the hero, and has saved a lot of patients.
She wanted my case to be a part of her story. That she could “cure” me. Let’s be honest, I am a bit of a challenge and would have looked pretty great on her resume.
Do you remember Dr N ??! You should read my whole story. J It will help you out a lot if you are trying to get your ducks in a row, or are dealing with a very careless doctor. EXTREMELY careless to the point of being dangerous.
At that point I was too sick to even advocate for myself, I am glad others intervened, including Dave as well.
At that point in treatment, if Dr S didn’t step in, as well as my neurologist, Dave, I am convinced I would be dead. I am very lucky with what I have been through that I am alive.
Right now things are extremely hard, but I am not dying. Just dysfunctional and certainly not having the time of my life. Like I said, read my story. J
Anywho, she was absolutely furious when I decided to see Dr J. I had never seen a doctor do this, but over the phone she literally threw a temper tantrum like a child, yelling at me and telling me she was the best. Haha. Okay. If your doctor does this, I would advise you to run.
I have a really hard time driving any sort of distance, and I needed to get to the clinic where I get my Depo shot every 3 months. It is about a 15 minute drive, but it wears me out.
I got to the clinic and apparently the only doctor working there quit, and no one called and told me there was no one there who could administer the shot.
The secretary is the only one working there, which doesn’t help a heck of a lot. She made sure I got squeezed in with another local gynecologist, one whom I have seen before. Phew.
I was feeling completely overwhelmed, and I hadn’t even seen Dr S yet. Part of it was pure exhaustion I believe.
I have also started to become very paranoid and anxiety ridden lately. Depression is beginning to set in. I am beginning to feel depersonalized, generally during the day.
This is basically like you are watching yourself from above… hmm.. it is kind of hard for me to explain right now. You are just a puppet and don’t really know what you are saying or anything. You are just “there”, I suppose.
I am not at that Cipro horrible level I once was, but still my mindset isn’t so great right now, even though I am trying to hold onto optimism that this is all bumps in the road on this crazy journey, and as they say, “this to shall pass”. I know it will… but in the meantime it definitely sucks.
Between feeling like I am getting sicker, the fog, the not feeling limbs, having Bartonella feet, and feeling complete exhaustion (I haven’t even been using my recumbent bike which makes me angry because it is right in front of me in the living room), I am just falling the frig apart.
The mind games in my head are so terrible. I always wonder if those are worse than being debilitated. At this point I think a sound mind would be a lot better, even if I can do less and less. Ugh.
That evening, I cried myself to sleep. That hasn’t happened to me in a lonnnnng time. I am almost thinking teenage heartbreaks when this had happened?
Before I fell asleep I asked Dave, “Is everything going to be okay?” You could tell he was a bit heartbroken in his eyes with me asking this, and he isn’t really a show emotions kind of guy, and he told me, yes, it will be okay. He left and took the dogs on an adventure, so I could sleep in peace.
The following day, I had a visit with my favoritest naturopath ever, Dr S. We went over some of my recent testing. The conversation went as follows…
All my neurotransmitters in my brain are shot and as well as my adrenals. He recommended for me to push for epilepsy study when I go back to my neurologist.
I was given a zillion tests for blood work, and I am waiting to hear back on some of the results. There was a lot of things checkered off, so we will see if there is any interpretations on my blood work.
I haven’t been ignoring my writing, but I felt like it was good to at least wait to see some of my results to share with you. What they mean, I am not too sure as of the moment.
Unfortunately from the results that are ready at the moment, some things I believe are “off”, although yet again they aren’t “too off”. One being, I was tested for diabetes.
I am grateful it appears I am okay, but Dr S emailed me stating it is likely I am having crashes during the day, which obviously doesn’t help anything. My iron was high, which was no surprise, and a lot of things like I said were borderline or fine.
I hate this. It is one of those situations you obviously don’t want to have another issue, but you find yourself needing some sort of explanation.
On another note for you all.. SO IMPORTANT!!!!!! When you get handed a blood work slip, ALWAYS research the tests given (or get any test results in your hands). I love Dr S, but sometimes there might be something in a doctor’s mind that they are not sharing with you. Learn this information.
Look up the diagnostic codes. There should be a few numbers/letters with a decimal point. Look them up on google. See what they are truly looking for.
Don’t be in the dark about everything. This is a part of advocating for yourself, and you should have all this information. See what they might be thinking or suspicious of that they haven’t told you.
It is nice to have those questions you may have that they do not share with you right in your hands. Advice for the day. 😉
The game plan at the moment is to treat the antibiotic resistant infections in my tummy and intestines (Hey! At least there is one explanation.. one very big explanation!) .
It is time to make my tummy and low functioning liver happy again. Detox detox detox!I am now on an even stricter diet, which is called the FODMAPS diet. It is meant to not feed the bad bacteria in your stomach and intestines. I eat pretty healthy, but even fruits and veggies among other things are actually poor choices at the moment.
Dr S thought it was a good idea to have the nutritional IV support… but due to my previously mentioned issues, it probably not going to be in the cards for me right now. I might continue exploring this avenue. Right now though, I am just tired and don’t feel like getting frustrated making phone calls.
So right now, I am in a hard place. I am currently too sick to treat Lyme etc. I have to fix the gut infection before I start up anything. And so I wait… Thus far, I think it has been five or six weeks off of antibiotics.
The bad news : not everything is Lyme, Bartonella, Babesia and more, but this is the damage.
After nearly 4 years of treatment for me, the infections are still very much there unfortunately, but there is a lot more to the story. We will put our fingers on it, I am sure. Making my gut happy is so important though to even get started with anything.
Dr S told me that I might get a lot worse again. To the point I could possibly backtrack to my IV progress. I have so much toxins and crap in me that are just stuck there, and of course there is the fun herx reactions trying to get rid of it. Major son of a bitch. Thousands upon thousands down the drain if this happens. I am not going to worry about it. As for right now, I am not well, but I seem to have plateaued in my downfall.
The great news of the day, “I STILL BELIEVE THERE IS A LOT OF HOPE FOR YOU. AND A LOT OF THIS CAN BE FIXED.”
Let’s hold onto this thought. Butterflies, rainbows and unicorns, this storm will pass. I still have faith.
This is my daily fun stuff. As you can see, this all isn’t good lol. And sadly I forgot to put a lot of things out. I leave pills scattered around the house in order to remember when to take them, and I also have my B12 injections.
I’m putting on my boxing gloves and I’m ready to fight.
On Saturday I slept for 17 hours. SEVENTEEN HOURS! Now, some of you who don’t “get it” say snarky comments… I have gotten it more than a time or two… “I would be that tired if I overslept that much”. Eff off.
Clearly, my body is beyond exhausted and sometimes I don’t find this a terrible thing, as it is allowing my body to heal and is obviously much needed The downside, I feel a bit useless.
The hours I was awake weren’t fun. I was so dizzy with my POTS symptoms, I couldn’t feel my legs, I was completely light sensitive (I made sure my Dad unscrewed the light bulb in the office so my side was dark), and a scary one, my vision became very blurry. I definitely needed this sleep.
During my one Sunday off a month, Dave and I did breakfast, sticking with the FODMAPS diet, trying to remain vegan, and having food intolerances makes it rather difficult to stick to a diet. I know I am going to probably end up adding at least chicken or eggs again. I need as much protein as possible.
The rest of the week has been about the same. Like I said, I haven’t fallen apart anymore, but there have been days I have sat in the parking lot not being able to walk into the store, walk into the post office. Days of unwashed hair, a little extra deodorant.
There was one day that I just needed to go to sleep, so I had to put Olive in the crate since I wouldn’t be watching her. I cried. I never do anything like that and I felt like a piece of crap for leaving her in there for a few hours when I was home.
All I can say is I am doing my best, and it is really hard even though I am trying to hold onto the optimism and keep on kicking ass, my mind really hates me. Wishing you all the very best weekend!
And of course, Miss Olive says, “Hi!!”