December Part 3 – The Appointment

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My long awaited appointment was on Friday. I had a pretty lengthy amount of notes, and I also sent over all my additional blood work. I had never spoken with this PA before, so I was really nervous as to what would be said, and honestly had the thought I very well might have been dropped as a patient and told there was nothing more that they could do for me.

I had pretty clear bulleted notes, strongly voicing my concerns and disappointment with my care. That I should have been making more improvements than I have. I know my body, and a year and a half with extremely aggressive protocols without improvement tells me something has to change. I tried to be polite, and it was one of those things that I wrote, “I don’t mean to sound rude but..” I was kind of being a jerk. Especially with some issues I have had with the notes I have received regarding my past appointments, as well as for some reason I am having a heck of a time getting prescriptions refilled. As nice as I could be, it was very obvious that I was pretty pissed off with everything. I was honest and told them about my long break, as well as changing my protocol to how I saw fit at the time.

My appointment did go a lot better than expected. I think my pretty blunt notes with my concerns and discouragement was actually a big help. I feel like I was at least somewhat listened to. I will no longer be doing Monday through Friday treatments (I still get my Thursday and my fun Friday bomb day week one), but the load is less, and I will now be doing every other day treatments. Also, I will be having 3 1/2 week breaks in between my cycles to recoup. I think she understood that I really do need that time off to recuperate and detox. I think this will help a lot.

We are going to focus more on Bartonella the first week of treatment, and the second and third will be more Babesia focused. I am a little worried however, as I kind of gave them my concerns about going on a specific antibiotic and I am pretty sure that is one key antibiotic that is tearing my stomach apart and making good use of my legs to run to the bathroom, and guess what? I am on it both weeks. Haha. I might have to tweak this, but I am going to give it a go and see how everything pans out. It might be a lot better considering I will no longer be treating every single day.

One of the top concerns she had is my need to sleep constantly. She wants me to get on a more regular sleep schedule, and maybe cut out my naps. At least my big one, since I don’t always take two during the day. One thing I will be adding back into my treatment is my B12 injections, as I have not done them in over a year. I have noticed that they do give me a little burst of energy, at least on the first day I take them. I will be taking my neurotropics earlier, my dosages tweaked a bit, and the goal is to be in bed around 10:00.

I had mentioned my myasthenia gravis antibodies to her, and she told me that I should be retested in the future. Maybe in a year. Okie dokie. She did encourage me to make that appointment with the neurologist to get an opinion, but she did tell me that if I am on antibiotics I might not have the greatest baseline, and it might also be too early in my treatment to really tell if there is permanent damage going on.

I will still make that appointment, just to see what he has to say about my progress and pick his brain a bit. He has seen me at my very worst, so he will at least know my case a bit more.

I have been trying to use my recumbent bike everyday, even if it is for 5 minutes. I have made it up to 10 some days. That is pretty sad considering I use to do the elliptical on the highest resistance for an hour before my strength training or zumba classes at the gym, or just going around the circuit and using the weights. It happens.

The first few days after my antibiotics, I have been feverish. Hot cold hot cold. My feet are either numb or the soles of them were in so much pain. I keep losing my train of thought, tic at night, and feel a bit depersonalized. This happens most when I am starting to get tired. I have noticed that lately the first few hours I am up, I am at my very best for the day. It kind of slides downhill after that.

Yesterday and today were really the hardest on me. I was just plain a mess. I think I am just herxing, since it has only been a week off treatment, and last time I took 5 weeks off without any real issues. Yesterday I was running a fever, my hands and feet were completely freezing, and I was so out of it that it took about 15 minutes to even get out of my car. I had to lean on anything to stand and my legs and feet were really numb. I went right to sleep as soon as I got home from work. I did feel a lot better after my nap, but I still wasn’t feeling so hot.

Today it kind of feels like I have a hangover. I have wicked pressure on my head, am nauseated, and I am just plain loopy. I am once again running a bit of a fever. On the upside, I am more functional body wise even though my symptoms still remain the same. My Dad had to run an errand for me, but I was at least able to drop the work mail off, pick up take-out since I don’t feel like making dinner, and was able to walk far enough to pick out a Christmas card for my parents since I couldn’t get a close spot. I even vacuumed. At least I got some exercise. That is still a lot for me to do, so that is something. I know I need to and just push as hard as I can go, even on lousy days. I really could nap right now, as I can barely keep my eyes open, but I am going to wait at least until 5:00 rolls around. I hope changing up my neurotropics will get rid of this complete exhaustion. Improve it at least a little bit.

I am also excited to announce a new addition to our family! She will be coming home with us sometime next month. Her Momma is a rescue from Texas, and was transported here to New Hampshire.

 

Some may think I am crazy for wanting another dog, but it really is a good motivation to keep going. As soon as I got off of my IVs, we got Cooper from our local humane society. I was doing a lot better at that time than I am now. I know however, I will make it work.

I love her so much already, and training and taking care of her will be a task but it will be really rewarding. That first time your puppy sits, lays down, gives you a paw, stays, etc. etc. is such a good feeling. And watching them learn, they are excited too. Well.. obviously they are too, maybe only for the fact that I have treats hidden in my pockets ๐Ÿ˜‰

Dave will also be a big help. He is the one who gets up in the middle of the night to let the pup out. I care for her during the morning and when I get home from work. This will be a great thing for us. Ain’t she a cutie pie? We don’t have a name decided yet. We were thinking something that starts with a “C”, since we have Chance and Cooper. Hmmmmโ€ฆ thoughts?

Wishing you all a very Merry Christmas if I don’t post until after the holiday. I have been remembering to turn the Christmas tree lights and our lights in our living room, and I think I am just about all ready to go other than wrapping presents, but I am one of those people who just throws things in Christmas bags or I will go insane. Dave takes over the wrapping jobs. Losing the tape, the scissors.. the cat playing with the wrapping paper. Bags it is.ย  We went light this year with shopping. My brother and Dave’s sister we didn’t have to shop for (I will bring her flowers anyway), Although we have close to Christmas birthdays for family coming, shopping was pretty easy this year. Christmas didn’t go crazy at all. Such a relief. I usually get beyond stressed out.

I think my biggest fear this week was baking, but I have already started, I will do a little bit each day. I am not a baker whatsoever, and my cookies, peanut brittle, or whatever I decide to make never looks like one should eat it. I remember last year, Dave made the peanut brittle because I got exhausted after making a few batches of umm.. interesting cookies. My Dad commented, “this year is the very best peanut brittle you have ever made!” Yeah. That is because I didn’t make it. Haha.

This year’s peanut brittle is made (My Dad said it came out awesome, even though I had to make it twice since I burnt the shit out of the first batch ๐Ÿ˜ฆ He wouldn’t thell me it was better than Dave’s batch though. Wah. )

601832_10153337823322404_9066398234094604034_n^^^ย My sad peanut brittle failure face lol. We made beef jerky in the dehydrator this year, and I will make bear claw cookies tonight. Sugar cookies and rice crispy treats will be my last project tomorrow.

We will be celebrating Christmas eve at my sister in law’s house. She was pretty considerate and called Dave to ask about what I am able to eat. That was really nice of her, as Dave was planning on having me eat before we went over there. I can at least join everyone else. ๐Ÿ™‚ Christmas day we will be at my parents. Once again, wishing you all a great holiday!

4 thoughts on “December Part 3 – The Appointment

  1. This caught my eye because I’ve been having a heck of a time getting refills from the J clinic for such a long time (ongoing) and this time, TODAY in fact, got a call back from them (after waiting for like 5 days from pharmacy trying to call/fax/etc to get refills) that they are now charging $10 per refill!?!? They said it is the new policy. My husband and I were just kind of dumbfounded in silence. Definitely gonna bring it up at my next appointment in January!

    • I waited 5 weeks for Daraprim, 3 weeks for klonopin (ended up cold turkey but I was fine), 2 weeks for Ativan. This past 6 months has been terrible. I’ve never ever had issues before. At least if I have a clinical issue they are super good at getting back to me. Always less than 10 business hours.
      I heard that they were charging for refills now! At least I got all mine in on Friday. I at least brought up my concerns with the refills and asked them to give me a few extra if they are having issues. I haven’t gone to the pharmacy yet to see.
      So it’s not just me then. I am thinking maybe more staff is needed? I love them but I was in tears more than once with this issue having to wait weeks. I get really bad anxiety, and without my Ativan I will get incredibly sick. Multiple seizures, my head feels like it will explode..hospital bad.
      Wishing you luck! And Merry Christmas ๐Ÿ™‚
      I’m not going to start treatment back up until the beginning of January. I don’t even want to think about it for the rest of the year ๐Ÿ™‚

      • So so true! I’m in the same boat with the seizures and anxiety. I paid for the refills yesterday (needed 5!) and guess what? They only sent one to be filled! I feel like there is such a lack of communication between the staff. Back to the phones I go…l leaving messages, talking back and forth with the pharmacy. It really shouldn’t be this hard for us, especially when stress is a big trigger for our immune systems ๐Ÿ˜ฆ
        Merry Christmas to you too. Have lovely holidays! ๐Ÿ™‚

  2. New development! Just got a message left on my phone from the clinic from the front staff. They are refunding the $10 refill fee because Dr. J did NOT approve that and they apologized. And they said something about how they only have a fee (higher than $10) for refills of narcotics (which I am not on thankfully). I’m still a bit confused, but I have an appointment in a few weeks so I’ll just ask in person what the policy is and get the scoop in person so there is no miscommunication! ๐Ÿ™‚ Happy New Year!

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