Too Long...

Wow! I have been a really bad blogger lately. Sorry about that. I want to do it more, but we have some crazy health stuff going on and between that and working, I just don't have a lot of time or energy these days. It's been way too long, so I thought I needed to write this before a month goes by and I have to write you a book to catch you up on everything. Before I start giving you an update, I want to give you a set of verses that have really been encouraging lately.

"My soul, wait only upon God and silently submit to Him; for my hope and expectation are from Him. He only is my Rock and my Salvation; He is my Defense and my Fortress, I shall not be moved. With God rests my salvation and my glory; He is my Rock of unyielding strength and impenetrable hardness, and my refuge is in God! Trust in, lean on, rely on, and have confidence in Him at all times, you people; pour out your hearts before Him. God is a refuge for us (a fortress and a high tower). Selah [pause, and calmly think of that]!" Psalm 62:5-8 Amplified Bible

I am not sure if I have posted these verses before, but I stumbled across them the other night during my devotional time. I love how the Amplified Bible describes the Lord, our Rock, with "unyielding strength and impenetrable hardness". I imagine the Lord as my protective barrier who won't let anything get to me without first going through Him. I also like how it definites trust. Sometimes, I just need things spelled out for me. I know that I am supposed to rely on God for everything I need, but I like how this version of scripture states what exactly "trust" looks like.
I do want to say that we found out that Brian did PASS the CPA exam! We are so thrilled!! Now, all he has to do is finish his class and complete a couple other steps. His goal is to try and get it done by Christmas, but work has been crazy for him and my health hasn't been good. So, it's looking like that might not happen. All in God's timing though! :) I am so proud of him. I know having that part done is a huge relief for him.

I actually started this post a couple of weeks ago. However, life got crazy, I got sicker and it just got set on the back burner. Let me catch you up...

On October 7th, Brian and I got up at 2am to head to Albuquerque, NM to see the neurologist that my doctor recommended. We were really looking forward to this appointment. After my interaction with this physician on the phone and other things we had heard about her, we thought she would be a great addition to our medical resources. However, once we got there, it didn't go as well as we expected. She did know a lot about the autonomic nervous system and how the brain has been affected by the infections; but she really didn't give us any new tools. She was a pretty big proponent of using a line of herbals to fight the infection which would be great except that I am deathly allergic to the alcohol that it's preserved in. So, although it was nice to get out of Tucson and spend some time with my husband, we don't think we will be working with this particular doctor. It's sad because at this point, we are really running out of options.

Since I had the water issue that we thought was related to rifampin, and we were waiting for our appointment with the new doctor (who didn't want me taking antibiotics anymore), until this past Tuesday I had been off treatment (except for a low dose of amoxicillin) for 6 weeks. Let me tell you, this was NOT good. It has about killed my body. I won't list all of my symptoms, but let's just say they are worse than they have ever been. My body has also started not aborbing nutrients very well. So, my blood work is all funky.

Guess what popped up again last week? - The water issue! Fun times! Everytime I drank water, it would go right through me. It's like my digestive system has stopped being able to absorb it. I would get so thirsty that I would drink a ton of glasses, but I still had all the symptoms of dehydration. It got so bad and started doing funky things to my heart, so we ended up in the ER last Thursday. Of course, they couldn't figure out what was causing it (especially since I haven't been on Rifampin), but we went to the good hospital, so they actually didn't question any of my diagnosises. They gave me IV fluids, and I actually was able to retain the water. So, it has something to do with my digestive tract. They had never heard of that before. I am not surprised, lol. I tend to not be a textbook case. CRAZY! The water issue comes and goes. Some days are better than others.

Another development that we are going to pursuing is the diagnosis of a condition of Mastocytosis or a form of it called Mast Cell Activation Disorder (MCAD). It was kind of a God thing how this came about. For awhile now, my Lyme doctor has been puzzled why I am so reactive. I did seem to improve this summer when we got the infection down, but my body is just so fragile, and I never recovered fully. Seven years ago, I stumbled across this disease, but frankly, it scared me, so I put it on the back burner. I also didn't have the blood or other lab markers (Mayo Clinic did test me for it), so we put the idea to rest. However, last week, two different people (a friend and my nutritionist) w/in 24 hours randomly brought this to my attention.

Bascially, Mastocytosis is where you body makes too many mast cells (histamine cells). It seems harmless, but it's not. It can cause a lot of trouble in your body. You can be born with the systemic version or you can acquire it later in life either set off by toxic chemical exposure or an infection (we are guessing it's infection for me). When I started researching the symptoms list, I realized that I now have about 21 out of the 29 symptoms. What is interesting is that in the last 3 years, they discovered a lighter version of the disease which is called MCAD. People who have the lighter form don't necessarily have the blood and other lab markers, but they do often show up positive if you did a skin biopsy or a bone marrow biopsy.

There are different forms of this disease and one version is malignant. However, the chance I have that version is extremely small. All in all though, it's a bit scary having to go through this process. It's also frustrating because my local primary doctor doesn't want to look into it, and my allergist wouldn't let me have an appointment because he has stopped seeing patients who aren't interested in allergy shots. Ugh! My Lyme doctor will be more than willing to pursue it and learn about it, but we just wanted to find someone locally who was familiar with it and could help us for once. We don't know how invasive we will get as far as the testing goes. I have had so much severe bone pain lately that we are considering a bone marrow biopsy, but I wish we didn't have to make these types of decisions ourselves. There is an AMAZING clinic in Boston, MA that has the top researchers in the world who specialize in this disease, but that is WAY too far for us to drive. So, once again, we are in a dilemma. AHHHH the constant drama gets old. :P

So, that's where we are at. We are exhausted and emotionally drained. It's been hard to try and come to grips that there is a high likely hood that I have a permanent disease on top of all of these infections. Again, when we have gotten the infections under control, things somewhat improve, but if I have this condition, this could be the cause of why I don't get totally well. That's really why I haven't updated. It's just hard to put this all into words. I thought about not writing about this until we have an official diagnosis, but we need prayer. We are desperately praying that someone will help us pursue this new condition. We need to know if this is playing a factor as to why I am not getting well. We are also praying for all test results as far as this disease to come back negative. If you would join with us, we would appreciate it. Please also be praying for our emotions and stamina. I can't tell how hard this last month has been. God is sustaining us, and we are hanging in there, but we really need for things to take a turn for the better. It's hard to watch my body keep crashing because we know it can only take so much. Also, please be praying for my job. I love it, but it's getting harder to make it through each day. It's super busy right now which is great for us financially, but very difficult when I have to work 10 hours a day. Thankfully, I can work from my bed, but it's still hard.

Well, I need to try and get some sleep since I actually have about 2 hours here before my phone appointment with my doctor's PA. I will try and update you this weekend. Thanks for praying friends!