This last week has been a busy one, and yet also very productive!
We met with our Social Security lawyer this last week. He feels very confident that I should have no issue getting my so deserved and necessary benefits! Yipee!! It will be a relief to see it happen! It already has helped me tremendously just knowing someone else is handling this for me. I am exhausted with having to deal with so much stuff!
Hubby and I also went for my routine check up with my LLMD (Lyme Literate MD) I came away from this appointment feeling more frightened than I have in a very long time about this blasted disease. At this point my battle is not going very well. According to my LLMD the bacteria is winning. So we are once again changing around my treatment protocol. Several new medications have been added. I will now be taking Minocycline (which I already have taken before) Avelox, Valtrex and three days of Mebendazole. My LLMD has warned me not to research these meds as I normally do because I will probably worry myself a great deal. He/she also said he/she is anticipating a pretty good Herx reaction. We were both also told to remember that it has to get worse before it gets better. That comment in itself was a bit unsettling for me. So much so that I expressed my concern if I had a serious issue with herxing and ended up in the ER what do I do since he/she is so far away. We were given his/her personal cell phone number in case such an issue should arise.
Since we're revamping my Lyme treatment we have also decided to get me off of Premarin. Since it carries so many concerns for cancer. I have been on Premarin since I was 24; thats 28 years! What the heck! If you're going to eat healthier, do your best to kill the bugs thriving on inside of you then I might as well take care of this issue too! Of course my hubby was quick to chime in and put his two cents in on this part of the game plan! He was a bit concerned for himself living with a woman off of her hormone treatment! My LLMD was quick to promise it will be a gradual process. So we have added to the list of new meds Prometrium (progestrone) My quick response was "You're not going to cause me to grow hair on my face are you?" he/she smiled and let me know quickly that no this will not cause hair growth. He/she also did remark that the Prometrium might help out with the pain I am experiencing. Any help in the pain area will be a welcomed relief!
As I sat listening and taking notes down fear swept throughout my body. "Oh my gosh" I thought to myself. I have been feeling awful. The exhaustion and pain levels are off the charts for me. Walking is such an effort that I would prefer not to have to move at all lately. And our staircase.... please someone just carry me up instead of making me go through the torture of each and every step! When my LLMD then said "I know this is not what you want to hear; however, if this does not improve things for you then I want you to see a surgeon and have a port put in for IV Therapy" It was at that moment that fear jumped to panic. My LLMD knows how frightened I am of IV Therapy and quickly told me that he/she could not let Lyme win and at this moment in time it is winning.
I am not coming out favorably right now in this battle!
That was all I needed to hear to realize just how really serious this disease is. OK I already knew it was horrible, yet lately I have become lax in a lot of areas.
In my defense maybe it has to do with all the "other" stuff going on in our life. I know I feel very overwhelmed lately. Running a household, being the one who handles the medical stuff, finances, Social Security issues, the modification for our home...I am worn out and over stressed for sure! Recently I have longed to be rescued from it all. I guess that is why having the Social Security lawyer is such a relief. One less thing for me to deal with. My husband is a huge help in so many other areas; however, this sort of stuff has always been my area of expertise to handle; especially since his accident twelve years ago.
I started also this week with a physical therapist to help me with my walking issues and constant pain in my legs and shoulders. I might need to invest once again in an ankle brace as my right foot now is starting to roll to the outside edge. According to my physical therapist this can set me up potentially for a fall. He has informed me that the nerves and muscles are so tight that I cannot do more than 15 seconds of his proposed exercised plan 3 times a day! I am back to taking short walks around our neighborhood. I am also going to be looking into yoga. It is very bad for Lyme patients to do Aerobics according to my LLMD. Yet my LLMD also was quick to scold me; in a very caring way. I must admit he/she has repeatedly told me I must get up exercise and lift light weights for my arms etc.
I am back to being extremely careful not to overdue carbs and no sugar. I have upped my protein and vegetable intake once again. I do think this will be much easier now that the holidays are behind me. I so love to cook and bake! I am working much harder at being positive and motivated! It's easy to get discouraged when you are chronically ill. I am finding you really have to focus on the "happy and good" things in your life daily. Maybe I need to start one of those daily "grateful" diaries! Not a bad idea!
So there you have it! The battle within rages onward. I am forced to take it up a notch at my end of the battle field! One of our friends informed my husband last night that a coworker of his lost a sister to Lyme Disease. I told my husband "honey this is so dangerous. There is a website (The Lyme Disease Memorial Page) dedicated to people who have lost their lives because of this disease.
This is a battle I will win! I have to win otherwise, I will no longer be here to fight! Giving up is not an option!
A PERSONAL INVITE - local friends, a lyme awareness evening is coming to tsawwassen, BC and you are invited to attend! it is an evening that is designed to raise lyme awarenes...
4 days ago