Saturday, October 2, 2010

Nothing New

I guess over the past few days I don't really have much to report. Nothing really new has happened. I am starting to get a little "down" which I should expect. Feeling bad can really take it's toll on you. I am thankful I don't feel worse than I do but on the flip side of things it if very frustrating to not be able to live your normal,play etc, and yet not be sick enough to be in the hospital. It is really hard to tell with this disease if you are making any progress. I am certainly not at a point where I am feeling better. This past week or so I haven't had much twitching. I have however had lots of joint pain. It is going on almost two weeks of joint and bone pain everyday. I hurt really bad in the mornings. I can't lay on my side without waking up to my arms being numb and all my joints hurting. This morning was one of the worst mornings. Both shoulders, elbows, wrists hurt. It's weird because because even my toes hurt. The joints in my toes can really just starting aching. I have also been really tired almost everyday. I have gone from just an hour nap to usually 3 and sometimes almost all day. It does get old to just be that tired and worn out. It's like I get one outing a day and then I'm done. Just getting my kids to and from school is hard but if I go to the grocery store or something then I am done for the day. This is the longest run of symptoms I've had, at least pain wise. I have been tired (not this tired, but tired) everyday since I don't know when but having pain everyday for two weeks is new. The doctor told me last week that he still feels like I will end up with IV meds but he is hoping to kill as much of the bacteria and stuff as he can so when I go on the IV the meds my herxing won't be so severe. It is just hard to say when we think we will have killed enough. I've got my charts redone to track my meds and my symptoms. Hopefully I'll get back on track with charting everything so I can see when maybe things are calming down.
I am still praying and waiting to figure out my finances. I am holding out hope to get some money from work but I can't say it's a guarantee. I am waiting on a doctors note to give to HR. I completely blew it at my last doctors appt because I forgot to ask for the letter. I guess that's part of my brain fog. Even if I get help from work that is only temporary and I still have to pray that my appeal will get overturned. I am in a tough spot because my specialist doesn't take insurance. She is about $125 a month for my appointment alone. All my supplements from her are another couple hundred a month. My husband asked if I had to have both doctors. I guess technically I don't have to have both docs but I feel better having two docs look at my treatment. I just am not ready to abandon my specialist. I feel very fortune ate to have two doctors that are willing to treat me and work together then be fighting to find one like so many Lymies. I am praying this infectious disease doctor I have to go see in LA come to the same conclusion and supports me in this fight.
Nothing exciting I know but I was thinking I need to update more even if it's really brief so I have a better documentary of this journey when I'm done. I haven't journaled in forever which I need to do again also. Some things I'm just not ready to put out there for the whole world to see.
Thanks though for those of you who are following my journey or just checking in on me once and a while. I appreciate all of the support I have been getting from old and new friends. It means the world to me to hear that someone just wants to know how I am doing and let me know that they are there if I need anything. I am blessed with some very sweet people in my life.

1 comment:

  1. HI Jess... I started with a doc in Torrance who does a LOT of Lyme treatment, and really focuses on killing the co-infections... I have Epstein Barr, CMV (cytomegalovirus) and HSV to deal with since the Lyme kicks all that stuff up.... He does IV's of all sorts of medicines that are NOT just the antibiotics.. things that support your immune system and still cause Herxing but after, you feel better... He is at the HOLTORF CENTER in Torrance in Los Angeles. I just began with him, not cheap, but you can send all the paperwork into your insurance and they will more than likely cover a lot of it... !!! His name is Dr Wightman... let me know if you need more info...
    I so understand what you write, and am right on board with you... I'm still in disbelief that it has been so long since I have felt well... I have watched more movies (at home) than I ever thought were out there... and, have had to find little things to give me pleasure... like watching birdies eating the seeds I leave on the patio for them...
    It is a very tough road, but I HAVE to believe that we will get better... I just have to believe that... KNOW you are not alone.... you are in good company, and somehow, this path will become easier.... Love to you, Jess.... and, please keep me posted... A big hug... Stephanie