Good...no GREAT NEWS!

Over the past few months I have been trying to come up with a plan of action.  Not always easy when you are never sure what each day will bring health wise....for me or the kids.  But I knew I needed to find a new primary care doc, have a new MRI done, fill out paperwork to make an appointment with neurosurgeon, find a new geneticist for the family, and see a doc who specializes in Mast Cell Activation Disorder. Whew!  So far....here is what I have learned.

My new primary doc is great!  He listened and I felt really understood my need to not just jump on the next medication.  He also agreed that my head symptoms seem Chiari related. (whooshing in head, severe shooting pain at base of skull, and dizzy/vertigo)  He ordered a new MRI which I go for on Monday.  He also wants some scans of my neck to make sure the screws are where they should be.  We are also trying a med I was already on before, so I should not have a reaction to it.

I scheduled for all of us to see a geneticist at Akron Children's.  I have heard some good things about her, and honestly I just can't travel to Cincy for these visits.  Having someone local would be so helpful!  Aidan really needs a doc who can help with possible PT and OT to strengthen his joints.  And since Chan is popping and cracking, I am just going to have him see her.  Praying he is just a noisy kid!  Either way we will all benefit from seeing her and getting answers.

Today I went and saw the doctor who specializes in MCAD.  It was quite possibly one of the best doc visits I have ever had!!  Not because I received GREAT news, but because he listened, understood and wants to help.  He told me right off that I am not well.  Hmmm kind of thought this might be true.  He said he was amazed I was even functioning.  I assured him I was not doing a very good job.  He is very concerned with my allergic outbreaks to so many meds.  He agrees with me on holding off on surgery.  Although I may need a brain decompression, my body is too sick to handle it.  With a weakened immune system from surgery, any new meds introduced could cause a severe reaction.

The interesting thing was everything he would normally start out with for a new patient....he can't do with me.  I can't come off benadryl to have more allergy testing done because I am constantly reacting to things in my environment.  He can't put me on a medication he typically uses because I am allergic.  And another treatment option he feels I might tolerate but he has to slowly introduce 2 meds into my system.  He told me I was on the right track with lotions, soaps, and cleaners.  Making them is a good way to eliminate the chemical part.  He did urge me to not get caught up in essential oils.  Even though I may be finding some benefits, I must be super careful.  Because of my extreme sensitivity these oils can and probably will trigger a reaction at some point.  So fragrance/smell free is the way to go.  Please when you see me do not criticize my lack of smell! ;)

He also expressed concern over some of my other symptoms.  He feels it is very likely that I have celiac disease or a gluten sensitivity/intolerance.  He ordered blood work to look into this.  As of right now I am not supposed to change eating habits (this could change results).  He did stress which ever I have, I must become gluten free.  He feels like my allergies are increasing due to the imbalance the gluten causes in my system.  He also is testing for Vitamin D and Iron deficiencies which he is certain I also have.  It was very odd how he could explain symptoms or things that happen to me without me even telling him.  Like he had already read my book and knew what was on the next page.

He asked me if I played the lottery.  I asked why. He responded, "Well you have to fairly rare illnesses, chiari and eds, and now I may be diagnosing you with 2 others.  Just seems like you have good chances."  Ummm good chances for being sick?  Later I was telling him about the mold growth in our old home. He said, "Yeah the lottery is probably not a good place to put your money."  Funny guy!  I guess this means I will be investing in doctors for a long time?

The bad news is I am sick. Well I already knew this.  And it is a long road to figure out.  Once I have the allergies better controlled I will more than likely need brain surgery.  After that months of healing and rebuilding my system once again. The bad health days will still probably out-number the good ones. There will never be complete healing and I will have to continue to change our life style.  The good, no GREAT, news is....I found another doc who is on my side and wanting to help me fight!  After seeing so many docs this was a sigh of relief.  He said at one point, "Most doctors probably look at you and see so many illnesses they do not know where to start.  But I want to focus in and find a place to start."  Thank you....thank you for stopping in your crazy busy day to listen, to help, and to try to help me find the answers!

In the middle of Blessings

It seems like life may have exploded over here!  Being a home schooling mama I never realized how much work went into the kids being in school.  Just when I think I figure our schedule out....it changes.  So many pray and many more ask how we are doing.  I normally say "great".  Honestly if I told people how we are really doing, they probably would run away screaming, "I really did not want to know!"  I am not terribly good at telling people face to face how things are going.  Probably because of the well of tears that are right behind the eye lids.  Or maybe it is because I feel they are tired of hearing yet another problem with our family.  I also loathe hearing myself complain.  I know many though want to know how they can help, how they can pray.  So for you all, here is the update! :)

Brooke is continuing to do well physically.  She has moments of exhaustion but is growing stronger!  She loves school and is working really hard.  I have been working with her teachers and principal on her IEP.  It is definitely a learning curve for me.  As time goes I feel more confident on what to ask and how to help.  She loves music and art, telling me in detail everything she learns!  Her swimming is improving and she will compete in her first meet in a few weeks!

Aidan is struggling.  He really likes school.  He is doing well academically but physically the days are draining.  Aidan is only on half days right now.  But even this is hard.  His head hurts most days and his pain level has been very bad.  He tries to control his feeling but sometimes the pain is just too much.  He really needs to see the neurosurgeon.  We do have an appointment with a pain doctor soon.  He also is going to see a new geneticist in November.  We are hoping for some answers and ways to deal/manage his pain.

I started working very part time again.  I love the job and really enjoy working.  Sadly though my body does not agree.  Right now my job is getting the best of me and my family the worst.  I somehow manage to make it through getting kids to school and to the job, but then I am done.  Dinner is near impossible, and cleaning is well....not going well.  Thankfully other people in the family pick up the slack as best as they can.  Most days it is just very hard to hold my head up.  I thought about wearing my collar but worry about perception (which I know is silly).  I am really giving me all and trying to make life work.

I am seeing a new doc next week.  I also see a Mast Cell specialist at the end of the month and a new geneticist in December.  I am truly praying for some answers.  One of my main issues right now is I can't take meds.  Every time I am put on a new med to help symptoms, I have a severe allergic reaction.  I am hoping the Mast Cell doc can help me figure this out.  I also know I need a decompression surgery on my cerebellum.  The neurosurgeon recommended this over a year ago. The whooshing sound and weird rushing in my head is only getting worse.  I notice more and more my eye sight and balance are not what they used to be. It is also quite possible that the screws from my fusion are causing irritation and pain.

I was supposed to go and see a neurosurgeon in Virginia this month for a second opinion.  He is one of the best in his field.  Sadly I had to cancel.  Just to see him was $600, and on top of it there is travel.  The bad news is he is cutting way back on new patients.  So by me not going now, means I will probably never be able to see him.  This scares me.  I worry what if he was the only one who could truly help?  But I am trusting that God has this.  Aidan and I do need to see our neurosurgeon in New York.  I need to know how to best help Aidan, and figure out what both of us need done.  He just moved into a new office, and there are some major hoops to jump through just to get an appointment.  I have to take time to fill out all the paperwork and get it mailed.  The thought of this is a bit exhausting and overwhelming.  And even if we have appointments, how will we get there?

So so many of you have helped us over the years. I know our drama may seem never ending....and I understand those who have to move away from our lives.  I assure you though we do not take one thing for granted.  We are so grateful for those who help in love and prayers.  A good friend of mine who suffers from similar conditions set up a gofundme account for our family.  I felt so weird about this and still do.  I wish I could figure out how to do this all on our own.  The idea of any more travels for doctors or surgeries is crippling.  And asking for help is also very hard!  I will honestly tell you that any money that is donated is strictly for medical use. I have prayed and fought with myself over this for awhile.  I am humbled and honored that my friend would take the time to do this in her own sickness.  And I am beyond grateful for anyone who can help, even through prayer!

GoFundMe