October Part 2 -Hmm.

There has been a lot going on this month! Right now, I am focusing on fixing broken pieces, trying to get myself together in order to get well. It hasn’t been a good month, but I at least had a moment I was able to get out there and not be a hermit and enjoy myself for awhile. Halloween is my favorite and I pushed myself with a lot of mind over matter and a nice long nap before going out with Dave and my friends.

I had an appointment with Dr. S and there is a lot to work on. Thank god he writes notes about the appointment, I was about to crash and fall asleep so I was completely out of it.

He actually ended up telling me to head home and make another appointment, see how I do with my new supplements and skip my chiropractic adjustment for the day.

He saw my pictures of the bloat and stomach issues. I am going to give a little side note and some words of wisdom before I continue on.

SIDE NOTE: If there is something funky.. mysterious rashes, swelling, anything really……..TAKE PICTURES, ALWAYS!!!
A) It is easier to just show a picture of what has been going on if whatever it was isn’t there anymore for your appointment time.
B) They can’t help you if they don’t know what it is just by your explanation.
C) You can kinda sound like you are full of shit, especially if you are seeing a new doctor without proof.
D) Seeing is believing.

He takes my word for it either way, as I have had a good and long relationship as a patient with him… but… not exactly knowing without that picture really isn’t super helpful. Especially if you are a mumbly, stuttery blob in the chair, in my case tweaking and cringing as well.

Okay. Back to my story. No more amoxicillin for me. As you saw on my last blog entry, I am definitely bloated terribly and am having really bad stomach issues. The game plan for this week until I see him again is to work on my stomach issues. Lots of pre and probiotics, digestive enzymes, oil of oregano, GI Integrity, switching to magnesium citrate to try to get me poopin’ normally again.

Not going for several days apparently is an issue even though I am not straining and just forgetting, and I have always had issues with my liver so I guess it isn’t helpful to it and I am very toxic.

Well, nada. Zero difference. It stinks to get a bunch of stuff thrown at me but nothing seems to be working.

When I go back I am going to do further testing, to perhaps pinpoint more about the bacteria, as I already had a test that showed I had a pretty severe bacterial infection, but learning more might help with a treatment plan.

Gut health is so imperative to any sort of healing. It is worrisome that working on diet for gut infections, particularly SIBO, supplements, the probiotics etc. are not touching this. We will get it figured out. It is really important to be on track and I know I just need to be patient.

The next thing on the agenda was kind of random. But Dr. S kind of seemed baffled all of my gynecologists that I have seen in this past year showed zero concern I have not had a period in over a year. That’s a long time! I certainly haven’t missed it. Dr S. wants me to be back on track, and hormones are definitely out of whack if it has been this long.

Progesterone cream it is. I have started that but have still yet to finally get my period. I kind of feel like I am a ticking time bomb and am going to eventually blow, and possibly bleed to death as it has been so long. Haha. Only kidding.

I am only 5 days in and woke up this morning with hellacious cramps. As you know, if you have followed my story (you should, I’m awesome), I have endo and it isn’t fun at all.

I was so late for work. I was in so much pain that I was dry heaving and kept on blacking out. I looked at the clock and pushed myself as hard as I could to get my shit together and make it through the day. I actually am pretty busy with lots to do, and a dinner I need to go to tonight, ugh.

I grabbed a coffee at the gas station on my way to work, and decided to buy a box of tampies, just in case. I actually had to look at the different boxes like, “what are these? I forgot all about you guys! ” LOL Like I said, I am pretty sure it is brewing.

Sorry if that is graphic or gross to you talking about my time of the month. Or that time in well over a year. Whatever. I promised you all the good, the bad, the ugly.

My Tourette’s hasn’t been as bad, but I am still doing the cringes and hand raising and a few “bahh!!!”s at night. I can deal with that all though. It is what it is.

Fantastic news.. I have CHRONIC EBV/MONO… No, this is not just flares people get that already have it in their system and it gets reactivated. That is common with Lyme.

I have it all the time. 24/7. 365 days a year. Not a days break in between. Okay, that really isn’t fantastic news.

What to do? I have been on several antiviral herbals, but unfortunately there is no cure for mono. Rest and all that good stuff. I certainly get enough rest! Haha. I added monolaurin (spelling?) to my antivirals I am already taking. Hopefully it will finally get deactivated.

I asked the risks involved, and I guess you are at a much higher risk for cancer if you are in the situation I am in. I have so much crap going on, I am not going to even be scared about it. I just want those viruses to simmer down and go away.

Once again, reoccurring theme, I am still sleeping my life away. It keeps getting worse and worse and I don’t know what to do about it. I almost get in a panic if I can’t go fall asleep somewhere.

I had to sleep after seeing Dr S after my brief appointment to get my back cracked and we decided on further testing for stomach bacteria. (Yes, I know I had already mentioned this but I have taken forever to write an update and have been writing bits and pieces for about a week now.) I was toast.

That day was yesterday, an 18 hour of sleep day. And I will tell you, I am so exhausted today. It hasn’t made a difference. I seriously want to cry because I feel like this has taken over my life.

Giving a disclaimer to those who suffer from chronic illness can have extreme fatigue, I am not downplaying or minimizing anyone else in my post today with my personal ongoing issues. It sucks all around for everyone.

I have been through the chronic illness fatigue and I will tell you this is beyond different. Something is very wrong. I have been through hell and back with this illness, and this is honestly making me scared.

I can’t wait until I see the sleep doctor. I will obviously mention the mono issue. But everyone seems to think it is something more, most likely narcolepsy with the array of symptoms I have. I know my body, and this isn’t just a mono issue.

I hope I get some answers and help. This is seriously destroying my life and making it really hard to continue to make strides in improving.

I have been trying to do things. We were invited the other day to watch the football game with friends right down the street. Nope. Slept thru it and we didn’t make it. I have to sleep for hours before trying to go anywhere, if I am able to get out of bed at all.

3 hours for a quick dinner, several hours to make it to go to a Halloween party with friends. It is one of the very few things I look forward to every year. It was a major struggle.

I also feel like an asshole to Olive as I have to put her in her crate if I can’t leave her in our fenced in yard, it has been too cold or rainy. I hate doing that when I am home but I need to sleep. She is a troublemaker and can’t be trusted though, but I really feel mean to do that to her.

I still have my classic Babesia symptoms, not seemingly as bad, but Bartonella has come out to play. Bartonella feet hurt a lot at night. Anxiety, anger, and paranoia. I am entirely oversensitive.

Each and everyday I have moments when I freak out thinking no one cares about me, my friends hate me, Dave is annoyed by me… I make up all these scenarios. And I think it so much it becomes real.

Obviously it is not, but it is still real very to me. I need to just try to relax and know that this isn’t reality, I am putting this all in my head. It is like I need reassurance from my friends and Dave… but the thing is.. IT IS ALL IN MY HEAD!

It will pass, it always does. It seems like it comes and goes in waves. But in the meantime I hurt pretty badly purely by my imagination.

The hallucinations have calmed down a bit though… Dave at least hasn’t had to pick through my food for spiders. 😉

My happy moment was Halloween. It was hard and I paid for it dearly for several days. I was lucky, there was plenty of places to sit and it wasn’t a crazy wild party or anything. We had so much fun and I was so glad to get out. I actually did okay. There was a few moments little waves hit me but I always came to and enjoyed myself. Again though, even though I was clearly invited I felt the crazy fake scenarios in my head of paranoia, I did try to be as much of a social butterfly as I could be.

I love homemade costumes. This year just wasn’t the same for me. I am usually ready at least a month in advance, and plan forever, but this was literally the day before I put our costumes together. I think I did alright though.

A goal I need to work on is to really get back to a ritual of my daily exercises given to me by my PT, and use the bike again. Suck it up when I am all disoriented waking up, or do it first thing in the morning even if it screws me up for the rest of the day.

My massage therapist warned me that I am losing muscle in my legs. This is the first time I have been told this. Since I have been really sick and a couch potato, over 4 years ago, I still had a bit of muscle. It was likely because I was so fit and active before my body said, “when”.

That’s not good at all. I mind over matter a lot of stuff and have done amazing things throughout my Lyme journey, but I will admit lately I have been slacking on the exercise. Really truly slacking.

And it makes a big difference with POTS as well. I need to boost my circulation. It isn’t fun to have to turn the shower off and curl into a ball on the shower floor because you are going to pass out.

Yup. A goal. Well it shouldn’t be a goal. I need to dedicate time to do this, even if I often sleep 15+ hours a day now. 10-20 minutes is a heck of a lot better than nothing.

Wish me luck with everything. Told ya, I have a lot going on!

Have a great day everyone!

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And of course, Miss Olive. I have no clue how the heck she got up there. My Queen of the mountain.
 

October Part 1 – Why Hello There!

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I wish I could tell you, “No news is good news”, but things really haven’t panned out to be that way the past month. I have begun a small antibiotic and herbal regiment (well, maybe it is small, maybe not…. I am just basing it off of my massive scale of treatments that I have been on in the past.

I had an appointment with my neurologist and was kind of pushy to try to get some testing done before the end of the year as I have no idea if there is going to be a giant spike in the cost of insurance. Let’s hope not. But, better safe than sorry.

I gave him the spiel about how I have been doing, and was really hoping to get some nerve function tests to at least see if it is permanent damage from my mid calves to my feet or if there is hope for further improvements. Makes sense, right?

Of course he didn’t order a test of any sorts for that, and my notes for the appointment even said, “NUMBNESS FROM THE MID CALF DOWN TO FEET, DON’T KNOW OF THE CAUSE”. For real??!!!! Pretty sure you are the Doctor, Sir, why don’t you figure this shit out. And before January 1st. Please and thank you. Ugh!

He did however seem pretty concerned about my sleep and told me that was in his mind the first priority. I of course was a little dishonest, and didn’t tell him my incident falling asleep for that split second on my way home from work, I just couldn’t, but I let him know my general sleep schedule, and my “I actually get a day off” sleep schedule.

I am seeing a sleep specialist next month, as he really believes I either have narcolepsy or possibly sleep apnea.  I really didn’t know much about sleep apnea, other than from watching shows with really heavy people and they have to wear these masks as they sleep. He told me it can really happen to anyone, it is just a higher risk factor.

He then told me, which made a lot more sense is that if you have very bad sleep apnea you may never really reach the higher levels of sleep, and that would cause the excessive daytime sleepiness.

Of course when telling the neurologist about the hours I sleep and trying to gather as much information as possible, with Dave knowing I was going there and was going to discuss these issues, he failed to tell me until AFTER the appointment I snore very loudly and make weird throat noises in between trying to swallow, chewing and choking.  Geez, super helpful Dave.

I suppose narcolepsy is a possibility, Dr J has also mentioned it to me in the past, as there are many similarities. I once again was just thinking of the specials on TV in which people fall right to the ground randomly and it is like an every moment event. I guess that isn’t always the case, those are the most severe cases. Guess I need to stop watching TLC specials perhaps.

If absolutely nothing pops up, then I will know that I am still as sick as shit and my body is in healing mode. People tend to have one side or the other for a spectrum of treatment. No sleep, or sleep all the time. This has just been an ongoing thing for years and years and has only gotten worse.  This is also much different though, it has gone on for a very long time without treatment too.

It is awful to be so debilitated, falling asleep literally mid conversations, getting anxiety if I can’t right then and there go and take a nap, feel a wave of tiredness from laughing too much or any sort of strong emotion, confusion and completely out of it if woken up, and I sleep for up to 18 hours a day.

With it only getting worse, it has not only messed up my ability to keep trying to have my legs moving to help with POTS, I have also missed out on a lot of things. I have missed a few birthday parties this month and have been a bit of a hermit. We try to go out to dinner on Saturday nights but take-out seems to be a common theme. The few times I have gone to do anything, simple things, I have looked at the clock wanting to go home, which I hate. I love my friends. I love being a part of doing anything, and even more having an invite even if it is an empty one. This isn’t me. This all around sucks.

Dave and I went to a fair over the weekend and although I made it a little bit, I had a very hard time. I couldn’t feel my legs and had to hold Dave to walk at all, I started getting completely out of it, rocking and having my Tourrette’s scrunchy faces. We left before anything got worse and I needed a near 7 hour nap to recoup from the time at the fair. At least I got to see the bunnies. They’re my favorite 🙂

I have had some recent blood work done and my cortisol is completely normal.. not really any explanation. I guess spinal taps can show some sort of information on it but I have yet to have a spinal tap for any sort of issue so far, as well as sleep studies. Who knows, we will see what the sleep specialist says!

My start of the month was a round of Coartem and it did go better than my previous round. I had the classic Babesia symptoms: air hunger, sweats, hot flashes.. that sort of thing and was pretty emotional and drained. I hated the air hunger. I couldn’t even lay on my back or on my stomach, I had to sit upright to breathe better. You just have to try to relax your mind and try to focus on your breathing, in a relaxing sort of way and not panic. Panicking only makes it much worse.

Treatment has been making me pretty nauseas and out of it. The other day (when I say the other day it might have been several weeks ago haha) I made an oopsies, on my way home from the Doc’s office, I just plain didn’t feel like cooking and decided on Chinese. I went to the Chinese food restaurant and waited and waited for my food to pick up, and a gentleman came out and said I never called. I got in a rage and was persistent that I had called in my order, and he then asked for my phone number. Low and behold, he checked the caller ID and I did NOT call in my food there. So, I made it to the other Chinese food restaurant and my food was sitting there waiting. Oy vey.

I have been having moments of being completely overwhelmed. With work, and with life in general and have had a few mini breakdowns. Today, I had to leave work, I just couldn’t do everything I needed, but absolutely had to run a couple of errands in town. I sat in the parking lot and did my best not to cry. The bank, dropping mail in the slot, and picking up dog food seemed out of reach for me. Don’t you do it Kimmiecakes! Don’t cry. Push. You got this. And I did. I can barely keep my eyes open right now and I will be psyched as soon as I am done this to take nap numero uno for the day. I have just been slacking so badly I didn’t want you all to think I have fallen off the face of the earth.

I have had hallucinations at night, seeing my usual spiders. I made a small plate of vegan nachos the other night to take my pills, and screamed out loud, convinced there was a spider in my food. Dave had to pick through my nachos and assure me that there was no bugs in my food. Bartonella is at it again. Not to mention the paranoia, anxiety, and just plain sadness lately. I am not really sad I don’t think it explains it right, I am more just frustrated. I always focus on all the good in my life when I get like that and pull myself out of the funk I end up getting in.

Neuro issues in my feet have taken over. Last week I hopped in my car and looked down, and there was blood all over my big toe and smeared on my feet. I must have hit my foot against something. Not only that, a big blister formed on my little toe. I am kind of glad I didn’t feel it. I have the feeling it would have hurt like a MOFO.

I am now taking a break from treatment again. I have begun to have major bloating issues. I measure myself to see if I am bloated or just feel that way, and I have gained over 4 inches in my gut in less than two weeks. FOUR INCHES!! That seems like a lot in such a short time.

Something is definitely going on, so the plan until my next appointment is to see if I can get the bloating down before then, and if not that will be my main focus again. I am assuming the gut infection is back in full-swing. I am sure I will be getting some testing done next month.
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Yikes! I look like I am preggers. This is after the first thing I ate for the morning. A small piece of steamed haddock. Morning fish? Yeah. I know. I work in the fish business. No breading, no gluten, not saturated in butter or fat, and very small amount. And my stomach only gets worse as the day goes on. I am grateful it is now sweater and legging season! Haha. Silver linings.

So, I will continue on with my FODMAPS diet, behave as much as possible, and load up on probiotics, prebiotics and FOS. Wish me luck on this one haha. At least at this point I am not remotely obsessing over it and hasn’t been a dent to my self esteem. It is what it is. Happy Wednesday!

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Annnnnnndddd of course here is Miss Olive! Getting big! Also, notice my blue foot. LOL

Note: Feel free to share, share away! I like to think I help others relate in some small way, and educate others by writing. But, please use my link or hit the share button on FB and do not copy and paste as your own work due to recent copyright infringement issues.

 

August Part 5 – I Treated, I Conquered

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This past week was my final week of treatment of this protocol. In my mind, I was very positive. Butterflies, rainbows, and unicorns. After all, it was only two measly antibiotics. Piece of cake. No problemo. I must say, I really underestimated it. This week was pretty miserable in fact.

The entire theme of this week was sleep. Lots and lots of sleep. I was so nauseated from my treatment. It was one of those feelings that I felt so much better while I was eating, but as soon as I was done I really regretted it. I have accomplished pretty much nothing at work, but I make sure I leave with the desk looking a little tidy, at least having the pens put away, the stamps, stapler and calculator in a neat fashion. That is about as much as I got done.

I seem to get a lot of the fun side effects from my medications. If it says edema, I will get it. Weight gain, and my all-time favorite, “severe diarrhea.” Omnicef is just one of those drugs. On a positive note, I figured it would offset my slight weight gain from my new POTS medication, and it definitely did.

Once again, I had a moment of forgetting that I have been potty trained, and didn’t make it to the bathroom in time. Joy. At least I know that my legs are still working, as I have been racing to the bathroom all week. Underwear shopping will be coming pretty soon. I also once again BARELY made it to the bathroom with a bed wetting accident. I am not really sure what is going on. All I know at least is my stomach is beyond messed up. I know this a bit, okay very TMI, but, I promised you all, the good, the bad, the ugly… the gross. How is everyone going to understand this disease if you sugarcoat everything? Right? Right. At this point, I honestly do not care.

When I went to see my massage therapist, we joked around about my incident, and I assured her I wouldn’t have any accidents while I was getting my massage done. Haha. My temperature in my legs and feet are still doing better, but my lymph and connective tissue in the back of my neck were painful, and I know I was full of toxins. I am definitely having Bartonella issues, and as expected, with all the recumbent biking I did before, my thighs were pretty knotted up.

Between Wednesday and Thursday, I slept 30 hours. It is annoying only for the fact that I am not being useful in any way, but I know my body is needing it desperately for healing. Yesterday, I slept for 16 hours. 16 hours! Dave didn’t even bother trying to wake me up in the evening, he told me that I was out like a light. All of this sleep has been making me slack on my biking exercises, but the first thing you do when you are out of sorts and wake up isn’t exercise. For me, it is laying in a ball on the couch with my face smushed into a pillow. It has made me feel pretty guilty. The day before my massage therapy however, I did manage to do 20 minutes on the bike, so I at least feel like I did something at least, making me feel just a little less guilty. There is always next week. I will make up for lost time.

I have been a bit stuttery all week, and it took me forever to try to check some work with my Dad. My vision continuously blurred, and I kept hearing buzzing in my right ear. I few heavy blinks and after a few moments this would go away, but it kept on happening over and over again. That and the fact I was focusing on not puking all over the keyboard. If I had to guess, my Dad would not be overly impressed with me.

The second to last day of my treatment, I was extremely frustrated. I have been having phone problems. Unlike the rest of the world, full of technology, I have a plain Jane slider phone. To me, it really doesn’t matter. Unfortunately, when you open the slider part for the keyboard, I get a white screen of death, and several of the buttons on my phone have stopped working. Phone calls are only occasionally coming in, and are cutting out. Yeah. It is time for a new phone.

Dave and I went to the Verizon store, and I instantly felt like I was going to pass out. The lights were totally screwing with me, and although I wanted to look around the store, I couldn’t move. I just had to sit there, and picked the phone that was closest to the chair. Good enough.. Unfortunately, the guy was a dink, and wouldn’t let me get the phone because it was in my Dad and his company’s name, even though I am on the contract. Dink.

I think he honestly just didn’t want to deal with me. I had a little mumbly Lyme rage session leaving at the man. I was not so nice, but I am guessing I probably came across as a drunk, so I looked like the idiot. So I will have to deal with my phone for a few more days, until my Dad has a chance to get a new one for me.

Dave offered to take me to Walmart, which was right across the street, but at that point I could barely hold my head up, talk, or keep my eyes open. I wouldn’t have even been able to use a scooter to get around. I bet it would have taken a good solid two minutes until I slammed into a pillar and broke their scooters. Maybe they are really durable, but I don’t think they are made to be like bumper cars. So home we went, and I instantly fell asleep.

I have felt left out this week, I have noticed this more and more over time. May I be a bit sensitive yes, but I know this is just a reality that I face. There is no denying it. Dave has told me that he would be willing to drive me to and from to try to get me out of the house if someone wants to do dinner with me, or just hang out, and that was months and months ago LOL. Like I said, a reality I face. It is one of the joys that happens when you can no longer do the things you use to.

A good friend has told me one of the best pieces of advice I have ever gotten, “Did they wake up intending to hurt you? If not, then let it go.” I honestly think that people just don’t realize their actions. I made my peace with everything. It doesn’t make it stop stinging though. Oh well. I will put a band aid over it. At least I am sleeping through pretty much everything. You can’t have any more tears if you are fast asleep.

On the other hand, yesterday, one of my best friends, Amelia, happened to have a bit of time off before she had to go to work. She came over to spend some time with me. She is one of those people that we can tell each other anything and everything, give each other advice, and just sit and talk for hours.

She will just come over and sit and watch a movie with me because she knows that is all I can do for the day. I always feel like everything is going to be okay when I see her, no matter what is wrong.

As of recently, I have been looking into essential oils, especially now that I am on my antibiotic break. My Dad has about a million of them, so he gave me some to try, and gave me a book to get some more information. I got some advice from a friend that is into the oils, and decided to give it a go.

I am extremely sensitive to the smells of certain oils, and I seemed to not have issues with the oils that I have tried. Clove, wintergreen, peppermint, lemon, lavender, and a few others. I have Frankinsense, which I have heard a lot of Lyme patients use as treatment, but I figured I would wait on that one, since I have just stopped treatment. I put a drop on each foot with the oils, and put a pair of socks over them before I went to bed.

Today something very different happened to me. Although I slept for 16 hours yesterday and woke up feeling like I had never gone to bed, felt feel flu-ish and am in a lot of pain, I felt as “normal” as I have been in years. Usually in the morning, when POTS hits me the most, dizziness, lightheadedness.

I sometimes collapse, black out, pass out, and have to take baby steps from the couch to the bathroom to do anything. Brush my teeth, lay on the couch, wash my face, couch. Hit my heart monitor button. Can you imagine having to do this every single day? Let me tell you, that shit gets old, real fast.

Today something happened. Finally a moment of blue skies.

I picked up my house a bit, vaccuumed, used my recumbant bike even though it was just for 10 minutes, actually took a shower (I skipped the hair washing but whatever), and started to clean my car out. Anyone that knows me knows that this is a daunting task. Haha. I have about 8 zillion receipts and bottles on the passenger side of my car, enough that you cannot remotely see the floor. I went to work, and had to go to the bank for Dave. I was determined to do it all.

These are things that so many things people take for granted. I don’t know if it was my disgustingly heavy protocol that I just finished, my new blood pressure medication ( I am finally beginning to lose the weight from it.. Yay!!) , juicing to detox, or beginning to use the essential oils. When you are doing so many different things, it is hard to pinpoint.

All I know is, this morning was a miracle.Telling Dave about my accomplishments I cried, happy crying, and it makes me so hopeful that someday I will get most of my life back. I have been taking it easy and know there is a good possibility I might crash, I am already ready for a nap, but I am so happy. I really think that things can and will turn around for me.

Knowledge is Power

74970_10151251987502404_1046823006_n I cannot stress the importance of education before starting a new treatment, a new medication, or having a procedure done. One should always take the time to research on your own, as knowledge is power, and it is necessary to be your own advocate.

Throughout my journey with chronic illness, I cannot believe the amount of people I have seen that go into a situation completely blind. Believe it or not, doctors are human, and they can make mistakes and can give the wrong advice for you, whether it be a new medication (I was told to take a medication, that would give me a high risk of stroke because of a blood clotting disorder, which was completely missed). Yikes!

Anything you are putting into your body, you should have full knowledge about it. You can say no if you don’t think something is right for you.

You should know the side effects of your medications, as well as drug interactions. If there is a procedure that you will be having, learn about how it is done. If you are getting an implanted device, you should know exactly what it is and how it works.

In my experience, I have found it beneficial to get second opinions. Even if you love your doctor, it is always good to have a new set of eyes on your medical history, and how they interpret it. There is nothing wrong with going to see another medical professional to get their input on what they think is right for you.

I have outlined some things you should do to prepare for your first appointment, as well as great tools and recommendations to help you during your appointment.

– Don’t ever be afraid to ask questions! If you are unsure of something, or something isn’t clear, never be afraid to speak up.

– Bring a notepad with you. You may have questions that you already want to ask when you go to your appointment, but as soon as you walk through the door you draw a complete blank. Having questions you want answered in your hands is highly recommended.

– Ask about the medications recommended to you. Find out why, and of course as I mentioned above, learn about what you will be taking.

– Bring someone with you to your appointment if possible. This way, you can have an extra set of ears if you are missing something, and as I have experienced during appointments, I might possibly hold on to one bit of information, and the rest goes through one ear and out the other.

– Find out what your diagnosis is, if they have established it. That way, you can find out as much information as possible on the particular condition.

– Bring a recorder. Ask your doctor if you can record your session.

I should note, after any doctor visit, you should ALWAYS go to medical records, and get a copy of their notes from the appointment. If you are getting blood work done, get copies of your results in your hands. I have had past experiences with doctors being quiet with what they say to you in person, yet if you have the records, you can get a feel of what your doctor is really thinking. Having all this information in your hands gives you the ability to be able to ask specific questions and having a file with all your information is an excellent idea.

Now that your doctor’s appointment is over, you might have to have testing or a procedure done. This can all be scary, and asking the right questions will not only give you information you need, but also put your mind at ease.

– What are the possible risks and complications? What is the most common issue having procedure done?

– Have the doctor go through the procedure with you step by step. Don’t be afraid to ask for details on what is to be done.

– How long will the procedure take?

– What do I need to do to prepare for this procedure? There may be specific things your doctor will want you to wear during your appointment, if they would like you to remove all your jewelry, should you “hold it in” if you have to go to the bathroom. Commonly with many ultrasounds that I have had, they have preferred for me to come in with a full bladder. Your doctor may want you to fast for your testing or procedure.

– What are the benefits of having the testing or procedure done?

– What will the results of the procedure or test tell me? – If there is a device implanted, ask what type of device, and if there has been issues with the particular device in the past.

– If a medical tool is passed along from patient to patient, ask how it is cleaned and cared for. Some procedures, such as endoscopies, can have a risk for infection if the tools are not maintained properly. I would like to include a link with more information about this topic ..  http://www.recallcenter.com/endoscope-superbug-infection/

– Ask about other options. If you do not want a test or procedure done, ask what alternative options you may have that might not be as invasive. Ask about the benefits of each option and weigh the pros and cons of each. Ask why they think the route they are taking is the best choice for you. You have now completed your testing or procedure.

There are more questions you should ask your doctor before leaving the office.

– What is the healing time? – If you get a PICC line or any IV device, make sure you feel comfortable with how to use it.

– What are my limitations and for how long?

– Ask what the results and findings were. Once again, obtain your medical records to keep on hand.

– Is there any side effects or complications you should worry about?

– When should you call your doctor if you believe there is a complication or issue? Can there be a worsening of symptoms?

If you believe there is an issue or something is worrying you, contact your doctor as soon as possible, or go to the ER if you believe there is an emergency.

I hope this helps my readers and brings awareness to you all. Please understand the importance of education and research. Be your own advocate! Wishing you all luck at your first appointment, testing, or procedure!

MTHFR Mutations and Lyme Disease

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This one is a good read for those with Lyme and co’s and those without. It is information that could help explain a lot if you are feeling unwell. It is also not a common thing that your doctor is testing for. Studies show that up to 50% of the population could have some sort of variation of this gene in different severities, and knowing about having this mutation and addressing it can help protect you from several illnesses and diseases.  

This past winter, I received an e-mail from my Lyme-literate naturopath regarding a test for genetic mutations of MTHFR. At that point, he was checking a bunch of boxes on my bloodwork, just trying to get some answers as to why I wasn’t getting any better. 

I read the e-mail with the results of my bloodwork and was immediately confused. MTHFR? I immediately thought motherfucker genetic deficiency when I read it. What is a motherfucker gene? LOL He pointed out the basics of what it was, a source to provide myself some information about this, and how to see some improvements. 

What is MTHFR? MTHFR is a gene that provides instructions for making the MTHFR enzyme (methylenetetrahydrofolate reductase… yeah… we will stick with MTHFR ;)) . This enzyme plays a role in producing amino acids, and is needed to create a chemical reaction involving forms of folate vitamins (B9 and folic acid) and the amino acid homocysteine, to make another amino acid, methionine. Ok… did I lose you yet? 

This gene plays an important, significant role in the methylation process in your body and is necessary for the production of nutrient enzymes. Methylation is a process in which your body alters the behavior of a gene and what it does, without actually changing the gene itself. Why is this necessary? With this particular gene causing these methylation pathways, it causes your body to have a very hard time detoxing, and make you have a predisposition to having many other illnesses and ailments. 

There are over 50 types of this genetic variation. However, the two most common types that are problematic are C677T and A1298C.These types refer to the numbers on the gene. 

Then this is where it gets even more confusing. There are many combinations of these, homozygous and heterozygous, etc. If you have two copies of a mutation, you are considered homozygous. One copy, heterozygous.  If you have a homozygous  deficiency, your enzyme efficiency about 30% effectiveness. Heterozygous, roughly 70% effectiveness. 

Two copies does put you at a higher risk of this mutation to be problematic. For instance, you can be homozygous 677,but heterozygous 1298. This would mean that both of your parents passed down the 677 mutation, but only one parent passed the 1298 mutation to you. Kind of get it now? 

What are some of the symptoms and conditions associated with having a MTHFR genetic mutation? There are different signs based off of what type of mutation you have.. or both! With the 677 genetic mutation, you are more susceptible to cardiovascular disease, issues with glutathione production, and peripheral neuropathy to name a few conditions. People with the 1298 deficiency are more susceptible to schizophrenia, dementia, decreased serotonin and dopamine levels, elevated blood pressure, migraines, nerve pain, also among many other symptoms and conditions.

Deficiencies in your MTHFR genes in general can also predisposition you to colon, breast, and rectal cancers. Homocystuneria, IBS, OCD, fibromyalgia -like symptoms, heart issues, addictions, psychiatric disorders, and migraines.

Research also shows that having a mutation of this gene can lead to birth defects, pregnancy difficulty, and the ability to get pregnant. Spina bifida, Down’s syndrome, and anencephaly are now associated with having one of these mutations as well. Dr. Amy Yasko has not seen an autistic child who did not have one or more of the MTHFR gene mutation. It is believed that 98% of children with Autism have some sort of MTHFR abnormality. That’s a lot!

How can you get tested for MTHFR? The way you can be tested for MTHFR is through blood work, saliva, and an oral swab. You can easily go to your doctors and ask them to order the Methylentetrahydrofolate reductase DNA test. Or just ask him or her for the MTHFR test. Either way. 🙂 These tests generally has to be sent out and can take a few weeks for you to get your answers. 

Other tests to consider if you are getting tested for MTHFR are homocysteine (an amino acid that is involved in the methylation process), Factor V Leiden  Mutation ( I got this fun one too), and your vitamin and folate levels as they all intertwine with MTHFR.

Now… how does this relate to Lyme disease? As you can see, there are a lot of reasons alone to take this mutation seriously. What is important to help ease symptoms and eliminate all the toxins in your body? *you should be raising your hand to this question!* If you said detox, you would be correct. 

In Lymie terms, the main issue is DETOX. Your body with this mutation does not have the process to eliminate toxins like those who do not have this mutation.  Toxins from candida, toxins from die-off, toxins from your antibiotics. People with MTHFR also tend to have a heavy metal toxicity, which also hinders the Lyme treatment process. 

What can you do once you find out you have a MTHFR genetic mutation? Unfortunately, you can’t change your body’s genes, but there are a ton of options to aide your body in what is called a methylation process. This means trying to get your body to properly make what it needs to, but it just needs help to get there. Many people do not need to address this issue at all, because they function at a better rate. 

With Lyme disease, it attacks everything as we know, and it is a MUST to address it! 

Some of the options to try include: methylfolate (Deplin prescription), b12 (specifically active methylcobalmine, intramuscular shots are a great option for this), probiotics (a given for Lymie’s!), Betaine (TMG), Riboflavin, milk thistle, NAC, nattokinase and baby aspirin (homozygous to prevent blood clotting), EPA/DHA, glutathione (needed for liver detox), flax seed, fish oil, and vitamins C, D, and E are also recommended.  ** ASK YOUR DOCTOR WHAT IS RIGHT FOR YOU**

Is there anything you should avoid if you have a MTHFR genetic mutation? Why yes there are! Avoid antacids, as they block b12 absorption, folic acid, which can be in foods as you can not process this well, certain birth controls, and nitrous oxide that is used in most dentistry as it increases homocysteine levels and depletes your B-12 levels. You should also avoid environmental and household toxins.

You will have to work extra hard to eliminate toxins from your body. Epsom salt baths, saunas, diet (gluten, sugar, and as well as avoiding folic acid and foods high in sulphur), burbur drops, lactated ringers (if you are on IV treatments), lymphatic massage, lemon water, and green tea are some good options. Please read my “Detox” blog entry for more information about detox. 🙂

Once again, everything needs to be done in moderation. You can actually make yourself feel worse if you overdo your methylation process. Ways to tell you might be overdoing it are fatigue, shakiness, fogginess, and dizziness to name a few issues. The best way to go about a methylation process is to start SLOW… then work your way up to your doctor’s recommended dose. Too much to start this protocol can overwhelm your body.

Hope this information brought to light some information for those who have MTHFR, or should consider it as a possibility. Having Lyme disease, it could be the piece of the puzzle that is hindering you from getting well. Consult with your doctor before starting any new additions to your protocols and have a great day! 🙂

http://nwhealthcare.net/index.php?id=64, http://ghr.nlm.nih.gov/gene/MTHFR,http://www.bmj.com/content/328/7455/1535, http://www.mthfr.com, https://sites.google.com/site/drjoneskids/mthfr,http://metabolichealing.com/michael-s-blog/what-is-mthfr-and-why-is-it-significant-for-your-health/, http://www.stopthethyroidmadness.com/mthfr/,http://en.wikipedia.org/wiki/Methylenetetrahydrofolate_reductase,www.mthfr.net,https://www.counsyl.com/diseases/mthfr-deficiency/, gestalrealty.com,mdjunction.com

Things NOT to Say to Someone With a Chronic Illness

I thought of this entry because as I shared the other day, I recently heard one of my friends ran his mouth saying I pick and choose what I do, I don’t do things anymore not because I am sick, but because I am lazy. HA. I would never ever wish what I am going through on my worst enemy. Until you live a day in my shoes, zip it. I handle a lot, I think anyways. And with a smile to boot!

For myself personally, I don’t care if I am vomiting all over the place, want to cry in pain, feel as high as a kite, can’t feel my leg or feet, or see things that aren’t there, I get up, and go. I need to. For me. I need some sense of independence. It keeps me going. It keeps me from giving up. It gives me a sense of normalcy. I need to work and make money.  I need to work to feel sane. I AM NOT LAZY.

I do what I need to and overdo the things I still do and in turn my nights are usually horrible. If you know me personally, you haven’t seen me out dancing, having cocktails, or singing karaoke in a LONG time. Do I miss it… YES.

Is it because I am “lazy”? Absolutely not. I miss my life. I miss going out and doing things. I use to always do things outdoors, like wheeling, target shooting, swimming, and walking my dog. I use to waitress. Now I simply can’t.

That was a huge stab in my back. Don’t ever judge me unless you have lost complete control of your body and your mind and can’t awaken from this horrible nightmare that is Lyme and co-infections. Ever.

I have even heard from a Lymie saying if I am so sick why am I working? She said she couldn’t because she was “way worse”. Listing things off to make sure I know that she is much worse off. I roll my eyes every time, because I don’t sit and compare myself to others. I am me. You are you. I am not going to list of my gigantic list of problems and demean yours.

First of all, everyone is different. Everyone’s symptoms are different. Mentally, people handle things very different than the next person. And how dare a Lymie say such another thing about another? It is not a competition. If it was, you win! I DON’T want to be sick. If you want to be the “sicker” one, than go for it. We are all on the same team here. Advocacy. Awareness. Healing together and providing hope to one another.

It drives me insane that many of us seem to attack each other. We fight so hard to get people to listen to us and get the CDC and IDSA to believe in chronic Lyme, but it is difficult when it seems like we are not united like we should be. We all need to be together in this. Being different from one another does not mean that we are not alike. We all have a common cause even though our stories can be much different from each other.

Some might not be able to work or do anything because they can’t move or literally get out of bed. Some need more help than others. Some can no longer drive and don’t have a good support system. Some are just plain much sicker than others. Some people might look completely normal to the person next to them, but they are completely suffering on the inside.

Never judge another person’s journey. Whether it is in sickness, or in life. You just don’t know unless you are that person. It is unfair, and it is not right. 

As you can tell, I have a little bit of an angry tone. LOL Lyme Rage. It’ll get ya. Crazy Kimmie. Roar.
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So the first comment  is what set me off and brought me to the idea on doing a post on things not to say to someone with chronic illness. It reminded me of every little thing that someone has said to piss me off or annoy be during the course of being sick.  It could apply to any illness really.

I hate it when people assume that Lyme is just some occasional joint pain. That is one of the reasons why I share my story. I hope to educate others about this disease and maybe they will learn the complexity of this disease.

Invisible illnesses can be extremely difficult because they are much harder for people to understand.  Lupus, Crohn’s, Fibromyalgia, personality disorders… there are so many that people suffer in silence.

My illness has been somewhat different though, as my illness for the most part has been anything but invisible. For awhile, back in winter and spring of earlier this year, I not only had my gallbladder out, I had pancreatitis for 5 months, hepatitis of an unknown origin (likely drug induced), ferritin levels off the chart, and just about anything was coming back with an issue on my bloodwork from a blood clotting disorder, to mycoplasma, to nutritional deficiencies, to heavy metal toxicity. I was a wreck. My tics were entirely worse. I had a lot of seizures. If I was well enough to really get around, I walked like I shit my pants. My weight was down to 105 pounds. I LOOKED sick. Everyone knew there was something wrong with me. No doubt about it.

And there will be comments. It is inevitable. Whether to your face or behind your back. That is life. But what do we find OFFENSIVE in conversation? Or just plain ANNOYING?

I saw a few entries from others but would like to incorporate it with my own thoughts and feelings. The other entries were great! And of course I will site them so you can check out the links for yourself. Please add my list of your “peeves” if you would like! 🙂 Sometimes it is good to vent.

Well, you could tell my above things were two things I was upset. They were just plain mean. Intentionally mean. I don’t do mean. I don’t like mean.  I think people that are intentionally mean are really unhappy people themselves. Therefore, they feel the need to say stupid things and feed off of negative energy to make themselves feel better. Off my chest. Phew. Once again, roar.  Other things not to say to someone with a chronic illness: 

To me, the greatest one is, “But you look great!” – I have gotten this a lot since I have put a lot of the weight I had lost back on. I no longer look like I am on the brink of death. Once some issues I was having were addressed, I had more color in my face. I just look better, healthier.

But there are MANY of you that don’t look or have never looked sick at all. Doesn’t mean you aren’t suffering inside, hating every little bit of what you are going through. I think when people say this, they are trying to make you feel better, but in turn, I take it as minimizing how you are feeling. If you look good, you must FEEL good too, right?!

“I get tired too. Especially when the weather is like this.” – Ugh! No.. you don’t understand. Don’t try that empathy bullshit with me. Almost all Lyme patients have a sleep disorder of one form of another. Many of us either don’t or have a hard time getting to the non-REM level of sleep, the level that makes you and your body feel rejuvinated and restored, compared to a healthy person.

The same goes for the “I get achy too, especially with this weather” -No.. you don’t. Empathy with good intentions once again. Gosh, it is always the weather! But you really have no idea unless you are suffering from a debilitating disease. So once again, stop it. Or I will waddle my Lyme riddled ass over to you and punch you in the face.

“How are you feeling, how are you feeling, how are you feeling!!!????” – Ok now, STOP IT. It is annoying. Sometimes we don’t like to talk about how we are doing constantly. A chronic disease is CHRONIC for a reason. Chronic Illness = persistent for a long time, or constantly reoccurring. You’re answer is probably always going to be the same. “Okay”. “Sore and tired”. “Miserable”. When people phrase it right like they often do with myself, “How’s it going?!” My answer is always the same. “It’s going.”

I want to hear about your day is going. What is new with you. The latest gossip. I don’t want to sit and talk about how I feel. I want to forget about it for at least a little while, as it has consumed my life.

“Well if you do this, then you will get better!” -Your remedies on how to make me feel better, like it is an easy fix. CHRONIC. Not an easy fix. And no, you are not my fucking doctor, you can shut your mouth now. Unless I ask you for doctorly advise, keep it to yourself. I have a bunch of antibiotics, supplements, etc. that I take. I don’t need your additional two cents. I trust my amazing, knowledgable naturopath, and one of the world’s leading Lyme doctors. Thanks but no thanks.

“So and so has Lyme (or whatever chronic illness) too, and he/she acts fine. He/she did this and they are all better!” – Kind of goes along with my  doctor pet peeve. Well, good for them. Everyone is different. What worked for John and Jane Doe, the person down the street, your second cousin, your dog, is going to be different than me. I obviously have no control over my brain causing me to do what it does. Or my organs. Or my joints.

“Call me if I can do anything to help!” – I am not going to call you. I don’t really want you doing things for me. Also, that is like one of those annoying empty things to say, because if you really wanted to help, you would just help.

If you really want to help, show up like my best friends and take me out of the house to do something simple. Do something specific. Bring me something that you know I can’t get myself, like cookies for Dave, apples, or a pumpkin for my front steps. Drop off dinner. Dinner that I can eat of course! LOL Grab me a coffee because you know I am feeling terrible and don’t want to drive the two minutes down the road to get one. Just come over and start cleaning. I always tell my friend who cleans to stop, but I know at nearly 6 feet tall ( I am 5’4″), she could stomp me to the ground. In turn, I get my dishes done, my house swept and vacuumed. A little less stress. Some people I just don’t want cleaning my house though. So just don’t.  If you have doubts, you probably aren’t one of those people. Lucky for those people, you don’t get the pleasure of sorting Dave and I’s undies.

“I wish I had the time to relax like you do and have more free time..” Umm what? I am not relaxed. I am stressed out of my mind, scared, hurting inside and out. I do what I can for work, then I sit on the couch. Missing life. It has been over a year since my treatment. And I have spent the majority of it on my couch. Or in bed. I don’t get out much and do anything. My close friends have been more than accommodating and doing things that they know I can participate in, like going to dinner. A bon fire which involves sitting. A movie. Even sometimes though, we have to make it right in town, and we generally play it by year, in case I am not up to even getting dinner or anything, really.

“You are having a good day! You must be getting all better!” – People with chronic illness have good days and bad. It by no means that we are all better. Just because I could go to the pharmacy, the bank and the post office after I go to work, does not mean I am healed. I always pay for it afterward, but I still do it! Sometimes I also don’t look like complete dog doo. If I am feeling okay, I will wash my hair and go the extra few steps. Take more time to take care of myself. So of course I am going to look better.

For me, my good days are not becoming necessarily more frequent, but when I have them, they are MUCH better than they use to be. I use to have some sort of functionality, best from 10-1. Now I function best from 10 to 2, rest, then can do a little more from around 4-6. That is huge for me. I can cook dinner. I can sweep and vacuum, if I am not taking a longer nap. But I am literally jumping for joy over the simple milestones.

That is another thing. When I am proud of a minuscule accomplishment, be proud with me, even though it sounds completely stupid. I made it through the airport without a wheelchair. That is amazing to me. I almost cried once I got home as I realized that I have come such a long way to make that milestone. It may sound stupid but it is a huge deal to me. Do not ruin it by telling me how you are doing something simply amazing, that I could not even remotely do. Or how you got a good deal on a pair of jeans.

“It should be fine if you go and do this with us!” – No.. it probably won’t be. I know what I can and can’t do. It is great to have an offer to go out and do something, but if you know I can’t go out dancing, then don’t ask. It makes me sad. If you really want to hang out, then come see me. We can sit and watch a movie together. To me, it is an empty invite.

It is also annoying if I do go out and do anything, acting like I am all better. I went out for an hour. Whoopedy doo. I spent the next two days getting well because I feel terrible afterward. But sometimes it is worth it with the right people.

An example is going to a restaurant with some friends that I wanted to really see a few towns over. I hardly ever leave town. Dave obviously drove. I had a seizure in the parking lot, again once I got home, and slept for 14 hours straight, and woke up feeling like I was hit by a train and like I had never went to sleep. It was just too much for me that day.

This annoyance also applies to things like overstaying your welcome. Unless you are my best friend that I don’t feel like I have to entertain, don’t. Sometimes I just want to be left alone. No one wants to have company when they feel like they are on the brink of death. They want peace and quiet. If you can see I am having a hard time, go home. I never know how I am going to be doing two days from now, so it is best to check. And please be understanding if I cancel plans last minute. It is not you. It is sometimes just exhausting having company.

Not trying to be a double standard in the means of canceling plans, at least for me I ALWAYS let a person know beforehand how I think I am going to do and if I might not be able to make it, but don’t say you are going to come over if you don’t plan on showing up. That is an asshole move. For someone sick or healthy.

For those of us on the couch and someone offers company and we are well enough for company, then come! Doing absolutely nothing makes you really look forward to the little things, and it is crushing when you look at the clock and no call, no text, no show because you found something more “fun” to do. It has happened to me. I bet it has happened to you.

“It could be worse!” – Yes, it could. It could always be worse. But you just told me what is going on with me isn’t really all that bad, right? After all, “it could be worse!”  For Lymies, I have gotten the comment that drives me insane.. “At least it’s not cancer!”. Yes. Cancer is terrible. But in my defense I will say, cancer is a recognizable disease, and everyone agrees upon it. Treatment is pretty cut and dry for options to be used to heal. For Lyme disease, there is so many disagreements about treatment, many are left without a doctor that is willing to treat them, and so many doctors are not treating the patients in a way that will be effective for the patient. Many do not realize the severity that Lyme and co infections can actually be, and yes, they can be deadly.

I should note that a lot of what I have said IS in fact, with good intentions. But those words coming out of your mouth most of the time make me feel like what I am going through really isn’t all that bad. You have no idea what I am going through. And I don’t know what you are going through. Plain and simple.

“It is all in your head.” – The annoyances and wrong things to say from your doctor. This is the worst thing to hear from your doctor. If you have a controversial illness, like Lyme, or they just can’t figure out what is wrong with you, it is in your head. You are depressed. You have anxiety. You have fibromyalgia ( I am convinced fibromyalgia IS Lyme disease.. another post for the fibro forums one day..).  Some of you have been to dozens of doctors to finally get someone to listen and believe you, that is is indeed NOT in your head.

Other than being misdiagnosed with other ailments, I have been told my the medical community that “I am doing this for attention” . A nurse told my husband this when he told her I have Lyme as he brought me into the hospital from a really bad seizure. Trust me, I could get attention in a lot better ways than having a chest port that in turn I have not taken a shower like the rest of the world for OVER A YEAR. Not my cup of tea. A low cut top with a push up bra would have been the easier choice for some attention. haha.

Getting treated like a drug addict. Once I said my list of medications at the hospital, I was treated like an addict. I use to not as much as take a Tylenol. I don’t like pills. But I need them to control my seizures and tics. I take my dozens upon dozens of pills and IVs every day to keep my immune system going, to keep me from having constant seizures, to try to control my verbal and physical tics, to help my heart beat normally, to sleep, to kill Lyme and co-infections to reach a level of remission one day. I am not a drug addict.

My last one that really bothers the crap out of me that many do… LYMES disease. You have no right to talk about LYME disease if you do not even know how to say it right.

This is my negative nancy post. LOL I just needed a vent session. As I  am writing this, as you can tell,  I am not so positive. No butterflies, rainbows, and unicorns today. Sorry folks. I still love all my readers, though!

I will do a follow up on positive things that we will appreciate and the right things to say will follow sooner or later, if my brain fogged mind reminds me to 🙂 . And what we can do to help ourselves deal with having a chronic illness.

Some great links below, I will also probably incorporate some of this info into my other future postings 😉

http://invisibleillnessweek.com/2009/06/19/20-things-not-to-say-to-an-ill-person/http://www.anapsid.org/cnd/coping/looksick.html, http://www.nytimes.com/2011/06/12/fashion/what-to-say-to-someone-whos-sick-this-life.html?_r=2&amp;,http://www.focusonthefamily.com/lifechallenges/emotional_health/living_with_chronic_pain_and_illness/ministering_effectively_to_the_chronically_ill.aspx,http://www.thefreedictionary.com/chronic      << I can’t remember or find the right words now… yay!