My Rocky Mountain Spotted Fever Story: Part 3

I am still struggling with talking about my story with RMSF because I worry that people are thinking I am doing it for “attention” about my illness… and then I get a phone call this morning that brings me to tears and it quickly reminds me I am doing the right thing bringing awareness to tick borne illnesses.

Before I talk about my story I want to tell you a little bit about my phone call this morning.  I have a friend that lives in Norman.  She knew I had RMSF but didn’t exactly know all the symptoms and problems associated with having this illness.  After reading my first blog she recognized many of my symptoms as some of the problems her dad had been dealing with for over a year.  He was being treated for dementia because his memory had gotten so bad he would forget how to drive home, leave burners on after cooking, and all the other things that someone with dementia deals with.  He was also being treated for arthritis, enlarged prostate and quite a few other issues.  She encouraged her mom to get her dad an appointment immediately and have him tested for tick borne illnesses.  He was tested and he asked for doxycycline.  The tick panel came back negative but he could already tell a difference in his thought process after just a few days of doxy.  They had a neurologist appointment yesterday and after doing all the scans the doctor tells her dad he does not have dementia and should be tested for Lymes.  The neurologist was knowledgeable about tick illnesses and asked him if his symptoms came on sudden or if they slowly progressed…. knowing that dementia doesn’t happen quick… it is more of a slow progression.

As her dad left the doctors office he  broke down with tears flowing, knowing he has a chance to get better.  He knows the struggle he has ahead of him with dealing with Lymes and the long term effects, but feels with treatment at least he will have some of his life back.  He will get to see his grandkids grow up, he will get to go to work, he will get to live life.  ( If you haven’t read the Kris Kristofferson story.. google it… read it!… his story is very much like this one.)

I’m telling his story to tell you I’m not going to think any more about writing and telling people about my story.  I want people to understand that these tick illnesses mimic lots of other diseases.  There are lots of stories of people thinking they are having a heart attack, being treated for dementia, fibromyalgia, arthritis, and a whole list of  other problems with in reality they have Lymes or RMSF or another tick illness.  These are treatable but HAVE TO BE DIAGNOSED EARLY.  RMSF and Lymes  are deadly if not treated.  They will finally cause damage every part of your body including your heart, kidneys, lungs, liver, prostate…. you name it… they will damage and destroy it and KILL YOU.

My Story: Part 3

I have to fess up…. When I wrote my last blog on June 5th,  I was talking about how much better I was feeling (and I was)  while sitting in my pajamas.  I had been in my pajamas for over 24 hours.  I did feel so much better but I still wasn’t 100% and I knew it.  Just feeling like getting out of bed felt so good.  The day before we had gone with our kids and helped them find some landscaping rocks at my parents property, gone out to eat, and just enjoyed spending time together.  I knew not to overdo it so I spent the next day just relaxing.  It made me think of something I had read:  “Some days you think you are doing life when in all reality you just got out of bed.”  I spent several days thinking I was really “doing life” when in reality I just was out of bed.

I returned to the doctor on Friday, June 10th.  This was 1 week after finishing my month long cycle of doxycycline.  I did well on the antibiotic and didn’t have the issues others have.  My doctor made sure I understood the importance of beginning a good probiotic immediately.  The joint and muscle pain I was having is about 90% gone, I do have some joint issues still but nothing like I was having.  I am still dealing with memory problems, insomnia, hot flashes, and some eyesight issues.   I thank God daily for my doctor, not only did she recognize my symptoms and get me tested immediately but she is also willing to research and work with me and continue to help me recover.  I was tested again and will get my results next week.

I told her about some of the natural and herbal remedies I have been researching and talking about with others with tick borne illnesses.  (I’m not sure what to call “us”… we need a nickname)  She also wants to do some more research herself and she also wants to call me after a week or so and see how I think I am doing with these natural remedies.  She did give me something that should help with the hot flashes and insomnia that I can take.

The thing that is bothering me the most now seems to be my memory.  I completely understand why my friends dad was diagnosed with dementia… I believe if I had not been diagnosed with RMSF it would not have been long till dementia would have something they would have been using to describe what was happening to me.  A few of my brain issues are:

• I am saying wrong words in sentences and not realizing I am saying them wrong
• I am very forgetful…. very
• Telling same things/stories to people many times
• I think I make stupid mistakes/decisions

I know you think you deal with some of these yourself… and you probably do… and I did also even before RMSF but it is more pronounced and more often.  I could tell you 1000 stories of my “brain farts” I’ve had lately but I don’t have that much time.  ( But…I’m sure if you asked some of my family and friends they will tell you some of the stories. haha)  Most of the time we are able to make light of it and continue on but I don’t want to live like this for the rest of my life so I will continue to try natural remedies for memory.  I, along with my doctor, am trying some things and I will let you know in a few weeks to a month how I am doing with these treatments.

AWARENESS!  We have got to become aware of the symptoms of these diseases and request/demand to be tested.  My hope is that doctors start realizing the large number of people with these diseases and become educated. There are many doctors that do… we want ALL doctors to understand.  Until then we have to really pay attention and educate ourselves.  Don’t just think you have the flu, arthritis, dementia,  fatigue, joint pain, heart issues…. the list can and does go on and on.  Getting an early diagnosis can make the difference in your recovery!  It can be the determining factor in whether you deal with this for the rest of your life or if you make a complete recovery, it can also be a difference in life or death.  In one of the Facebook groups I belong to it was asked, “What are the 3 things that most improved your health?”  We could only list 3 and that was very hard for me.   There were lots of really good answers and “ideas” of things I plan to start researching to try.  My answers were:

1. A knowledgeable doctor
2. Personal education of the disease
3. Family and friend support/knowledge

I think having a knowledgeable doctor is key and can make a huge difference in your journey of getting well.  If you don’t have a knowledgeable doctor… GET ONE!    Of course, personal education is what we should all do when we have something affect us like these diseases do.  Family and friend support is a lifesaver.  My husband has been a huge factor in my recovery.  He understood.  He educated himself.  He did everything that needed to be done that I couldn’t do.  He just understood and because of that I felt like I could just concentrate on getting well without having to try to “do something” that I wasn’t able to do.  I love him more every day because of his love and understanding!!!  Family members that would call and check on me or come help me when I didn’t feel like helping myself was also key in my recovery.  The support of your extended family … your friends… is vital also.  To know you have friends that would call you daily and check on you, to send you a messages, send you get well cards, and to come by and check on you helps you keep a positive outlook which is very important.  Your mind starts playing games with you when you feel so bad and to have family and friends that will help you, do anything for you is more helpful in your recovery than you will realize.  For them to just understand what you are going through is so very important.   It helps you not feel so much like you are crazy and that what is happening to you is normal (even though this normal isn’t really normal).

This is my journey almost 6 weeks into my “diagnosis”.  I’m not really sure how long I have had RMSF because I don’t recall a tick bite, a rash or a fever.  I never follow the rules.  🙂

If you want to refresh your memory on the symptoms go back to my blog:  TICKED OFF.   And remember… this is my story.  There are 100’s of 1000’s of stories and they are all different.  Everyone’s symptoms vary as does their story.