December Part 5- Last Day

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The start to my Tuesday morning was not such a good one. It began by lots of coughing. Coughing up bloody phlegm. Yummy. This was just another one of my many very questionable issues that I have had over the past few months. I wasn’t sure what to do, but I knew the right thing to do was to actually say something, because I usually keep my lips sealed, and then I don’t get the possible help I need right when I need it.

I messaged Dr S, with the hopes he could whip up a tincture, possibly including slippery elm, as it was recommended to me, or give me a suggestion as to what I should do. I really don’t like the ER, but I still give myself a pat on the back to at least leave a message about this new issue of the morning.

After an hour or so, I got a phone call back, and I feel pretty much like the buck was passed on. I was told to see my primary (as far as I knew he was my primary, as that is what I asked if he could be while preparing for my first Dr J visit). So I suppose I do not have a primary care doctor? And no slippery elm or natural treatment to boot. I was at a loss. I was confused. I didn’t know what to do, but I felt like I wanted to just give up on it, and that is just what I did.

I am chalking up my blood issue to possible sinus issues. I have to, because if I don’t my mind is going to pop like a big zit. My friend and massage therapist, Gayle, recommended me to speak with her local GP, and I gave a phone call today and will be getting an appointment to become an established patient. I can’t keep on having issues happening to me, without answers, a place to go, and I need someone that will likely be on my speed dial, especially these days.

Part of that is my own fault because of the fear of the ER, but even little issues that may arise, I need as many people locally to help me out as possible. It takes an army once in awhile when you have a chronic illness. At this point, my army consists of my LLMD, my naturopath, 4 gynecologists, a cardiologist, and a neurologist. Annnd a partridge in a pearrrr treeeeeeee……LOL ( I have been trying to get into my Christmas spirit remembering to plug in my tree at night that Dave put up and watching Christmas movies) Not to mention my kick-ass general surgeon, all the nurses, and lab techs to help me along the way. Yep. An army.

After getting my work done, and having my massage therapy of the day, I ended up calling the walk-in clinic regarding my urine culture results. Their story had changed a bit, from “Wow a bad UTI”, which wouldn’t have caused an all day nausea and vomit fest, but hey, I am not a doctor, to “borderline, unknown cause”. Hmm. Mysterious Kimmiecakes.

The rest of the day, and even today, I have been teary eyed, and spent the night holding back tears. I have been having a pity party (which I hate and it really isn’t me), yet this time I feel like it is allowed for the day. Just for the day, as tomorrow is a new day. It will be a brighter day.

It feels like the entire medical system is failing me. I feel like everyone has given up on me. I want to be better so bad, but I keep going downhill, and having worse and more questionable issues, and I feel incredibly misunderstood, and that I no longer matter. I know this isn’t 100% true, as some things are slowly but surely are getting worked on, like my completely out of whack hormones, but I can’t help to feel like this when I don’t really have any direction at the moment. I feel completely lost. Completely stuck.

I am sure many of you feel the exact same way, so I am not alone in this. I am just keeping in mind that everything will be okay, and am staying focused on remembering all the good things. Everything will eventually be okay. It has to be, right?! I haven’t given up hope just yet, but it seems like a never ending cycle. I am just losing patience with this all. I am beginning to get really angry. Like I said, I am sure many of you feel the exact same way. Hold onto all the good and hold onto it tight and it will help you get through these tough times.

I didn’t want to call this new doctor that day, and I gave Dave a single long, run on sentence explanation about what went on that day, and left it at that. If I had done these things, I would have lost my mind. At least my rage seems to be more under control. Silver linings? I know in the back of my mind, when I have the ability to at least, yelling never helps a situation. When my episodes occur, even though I am not fully aware of what I am doing or saying, I know whatever has transpired has been wrong, and I end up feeling very guilty and embarrassed for the rest of the day.

Coartem is going better than expected, yet I think a big part of my emotional past few days can be attributed (maybe this isn’t the right word but I don’t feel like using Google for the dictionary so excuse me:) ) to the Coartem. I have had days in the past that I have cried and cried on this particular treatment, and I think this may be why. I usually bite the bullet in stressful situations and suck it up, but I feel like I am melting at the moment.

It is the last day of treatment. I am very grateful even though I am not sure how this break will go. I am thinking it will be a good thing. I ordered a few days of a juice cleanse, to focus mainly on liver detox, and alkalinity in my body. I tend to feel a little better afterward, and more detox will definitely help. It also reminds me to eat well, as it doesn’t allow me to eat junk for the next several days, or I will get a pretty big tummy ache. I haven’t been terrible with my diet lately as I have still been trying to baby my stomach, but it certainly makes you more aware of what you are putting into your body. All good things. 🙂

This morning when I picked up my morning coffee, a man approached me asking about the sticker in the back window of my car. It is a Lyme disease ribbon with the words, “Lyme Awareness”. He asked me about my disease, my symptoms, treatment, my experiences… just about everything. He told me that he had been bitten in the hand, with the tick needing to be removed at the hospital. It was swollen, but as many of you know, you absolutely do not need to have a bullseye rash to have contracted Lyme, nor is the bullseye rash necessarily a perfect bullseye.

He told me he did get a few short days of an antibiotic, and told me they told him to throw the tick away as it is never worth testing it. GASP!!!!! I told him it is very much worth testing it, and he can find the information online on how to send it in for our area. He has had ongoing medical issues, and I pointed him to Dr S. Dr S may have hurt my feelings the day before and left me feeling rather lost, abandoned and confused, but he is still an amazing doctor and without a doubt in my mind one of if not the best Lyme literate doctors in my state. He is a brilliant man in many ways. And so I believe he is now going to go pay a visit to Dr S.

It is a great feeling to know that even something as small as a bumper sticker can help one person out. It made me feel a little more like I matter after the past couple of days, like I make a difference. That is one of the reasons why I blog, to hopefully make a difference to others, to help them, to make my readers not feel so alone that are struggling themselves. To educate.

Today I feel like I did my job to educate, and it was a good feeling that he had an open mind, and truly wanted to hear what I had to say. To all of you trying to spread awareness, I will say however there will be people who will be annoyed, there are people who just plain don’t want to hear it (this is when you just need to call it quits on it as no one that has a closed mind will be effected by your words), but to those who do, you are helping them. It could possibly change their life. Keep spreading the word and bringing awareness. 🙂

8 thoughts on “December Part 5- Last Day

  1. I hope the new GP will help fill in the gaps. Just a suggestion and maybe you already did this, but maybe check in with Dr. J and send the urine results. I would think borderline , especially with not feeling well might need treatment. As you probably know, not all antibiotics are sensitive to every infection. It’s the Mom in me , sorry… Just hate for something to go untreated. UTI can progress to Kidney infections and you already have too much on your plate. 😦

    I know it sounds like just one more thing to deal with, but with the holidays coming …it might not hurt to get another opinion on the UTI results at least. My dental hygenist ended up having something similar and she was very sick. Took the drs awhile to figure it out. Of course I understand your situation might be different, but hate to have you suffer.

    We are in a similar boat with Drs. Lyme dr. can’t handle everything and in between waiting for new GP.

    Take Care, KIm

  2. I just want you to know that you DO make a difference! I just found your blog and I’m so grateful I did. I got diagnosed in August (finally) after a tick bite from 2001. Now that I’m on anti biotics and a huge array of other lyme protocol supplements I’m having my butt kicked in so many ways it’s scary. The wide awake nights , the heavy brain fog, anxiety,tremors, and fatigue are worse than ever, I’m learning how to detox more and manage these bugs as they die off. But finding your blog has been healing in itself, because I read some of your experiences and can relate , which makes me feel less alone. So thank you for all you share, I send you good positive thoughts for your healing!

  3. yay you for awareness 🙂 i try to do the same thing – but i am told “not to talk about it” by some people – not that i really associate with anyone anymore.

    I did manage to educate my dentist’s partner the other day – while pulling a tooth (negative that root canal he wanted to do – i about jumped out of the chair) – he said “don’t you get that from deer?”…..

    Do you think the tears are a herx? Mine were when i was taking ABX – tears and rage at the same time. Im not in a position to detox – so treatment has to wait.

    FYI – you described my rage perfectly ” When my episodes occur, even though I am not fully aware of what I am doing or saying, “…..i have heard that the episodes are actually possibly a type of seizure – but if i read it…i don’t remember where….

    • Yes they are actually types of seizures occasionally. I don’t have the link handy but type into my blog’s search engine Lyme and Seizures, and it will give you all sorts of info!

  4. This really hit home with me as I’m having major weakiness in both arms and am having a pity party too. All I want to do is be able to keep my job. Now I may be dealing with methylation issues but my doc said I would be able to detox on his protocol but now I’m finding out I have to trust my own self. Thanks for the great blog as usual. 🙂 So sorry your going through so much!! 1 minute I’m scared for my life, the next I’m kicking but even if I can’t use my arms. Not giving up yet.

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