The Follow-Up

I will keep this quick and just update on today's visit to geneticist.  I took Brooke, Chan and myself.  Doc does feel we all have signs of hyper-mobile ehlers danlos syndrome.  But she also feels like we are not typical cases.  She sees the various traits throughout our family.  She does not feel there is any need to test for any other form of eds.  I agree with her on this.  She does feel that there are good reasons to take a broader look at other genetic issues within our family.  Aidan and myself are her main reasons for this.  She suggested ordering a whole exome sequencing test.  This test would take a "bird's eye view" of our genetic make up.  The doc said she does not recommend this test very often.  She warned it may create more questions.  But she feels it is worth that risk.  She thinks it may help us understand how to proceed.  On our end it is simple.  They need blood work for Aidan, Tim and myself.  The blood test will be anaylzed by a lab and a report will be made.  It can take up to 15 weeks for results.  Doc and genetics counselor both strongly cautioned that we may learn things that simply can't be answered by science today.  I felt like I needed to ask if alien dna may be found, and how this will be covered by insurance? 

 In all seriousness though....I am kind of confused what we are going to learn and how it will help.  Is this test going to help us help Aidan and me?  Or will it just muddy waters?  I know knowledge is power...but if we do not have the knowledge to decipher the info how is that powerful? Yes it may some day be powerful....but can it help us now?  

We are going to proceed even with many questions.  First we need to find out if insurance will even cover.  Some insurances do not.  So we are praying ours feels this may help.  We are also taking Aidan to a pain management doc and a Physiatrist for a consult.  Thank you for prayers and support as we continue on.  Many days I am drained and not sure which way is up.  But hearing encouragement keeps me fighting and moving forward!

Geneticist Visit

I decided to jump on here and give an update on Aidan's appointment.  I know so many prayed and I thank you for that. I can't say we have any clear answers.  I did really like the staff and doc.  They were all very caring and understanding.  Honestly the doc did not offer a ton of hope.  But I guess that is not her job.  She works in facts and realities.  If you have ever been to a geneticist, you know the extensive family history questions they ask.  You also know it is a bit like putting together a 5000 piece puzzle.  It can get confusing and muddy very fast.  This doc was very gentle and soothing in her tone.  I felt comforted by her looks of care towards Aidan.

This is what we know....Aidan is in pain.  Most of his days are spent sitting or laying.  He hurts to walk or do much.  He knows if he plays for a few hours, the next few days he will need rest.  For example I suggested a group I thought he would like.  He said, "Well I probably would. But if I do it I will not be able to swim."  He knows picking one thing means missing out on another.  The doc is not completely sure what is causing the most pain.  We know his joints hurt.  If you sit by him, you will hear popping and cracking from his joints subluxing in and out of socket.  He can't sit still because he needs to move to keep from getting stiff or limbs falling asleep.  We also know he is very weak.  He is not eating the greatest, so we need to determine if he is low in vitamins.  We know his head hurts 70-90% of the day.  She feels this is most likely due to his small chiari herniation.

The doc did some basics tests to test for EDS.  Not that she did not think he had, just wanted to confirm.  She said he has some pretty classic symptoms-doughy skin, pale, see through skin, hyper-mobile joints.  She did not think he was extremely flexible which I have to agree with.  But she also feels he is in so much pain he resists moving in certain ways.  Hyper-mobile EDS is tricky to diagnosis.  There is no blood test to confirm, just observation by doctor.  She feels like Hyper-mobile EDS is the right diagnosis.  With that said, she wants to see myself, Brooke, and Chandler as soon as possible to see and compare whole family.  They have us all coming back on Monday.  She may want to order further genetic testing to rule out any other form of EDS or connective tissue disorder.  But genetic testing is very expensive and not always covered by insurance.  After seeing all of us, she will make the determination if the testing is needed.  She did rule out Marfan's but is still curious to see if his heart is ok.  She will order an EKG to just double check.

She gave us a few other options to pursue.  She definitely thinks he needs a pain management specialist.  We are also referred to a physiotherapist at children's.  Hopefully they can help with some strength and endurance.  She did suggest a scooter or wheel chair.  I was not super thrilled about this simply because I do not want him to become weaker.  But she feels that it would help preserve his energy.  He might use chair for store so he has energy for swim.  She also feels like I am correct in having him see neurosurgeon as soon as possible.  Although I do not want to jump into surgery, we need to sit with him and have him read MRI.  He read and we have talked via email, but I need that face to face.  I need to hear him say...it is time or we can wait a little longer.  We are not just talking a decompression like Brooke (which is nothing to sneeze at).  We are talking a decompression and fusion from skull to c-2.  Yes I know kids have this surgery and do great.  This surgery is not necessarily a fix.  Some are worse after, some require many further surgeries.  I just want to make sure we have covered all our bases and that he is healthy enough for surgery.

Next step is going back Monday with all of us.  If you are praying for our family, please pray for strength for me.  I am not well.  I try to hide it but honestly my body is broken.  Driving, sitting in appointments(while wrestling a 4 year old) and then having to go about the rest of our day is beyond draining.  I do not want to complain....I know we are blessed.  It is just very hard to pick up your feet and move forward some days.  I know what I need is rest but when you have children who need you there is no rest.  I am so grateful for all of the people who have helped us this Christmas season!  I have felt so much the love of others.  I dream of some day writing a post saying "We are healed!"  I pray as time goes on they will find new ways to help us and even ease the pain a bit.  For now, we will move forward and find hope in the future.  And we thank those who walk this journey with us!  You help more than you could possibly know!

A Rambling Mess

Here I am not able to sleep.  I can hear the slight sound of rain on my window.  I know the weather is why I hurt so much today.  Aidan and Chan joined me today with headaches and body aches.  I wish desperately for their sake we could find a cure...a better way to survive this.  Over the past few weeks we have made some pretty big changes again.  It seems like the more we try to live a "normal" life, the more we realize it is just not possible.  That does not mean I quit fighting for it.  I wake up every morning praying and clinging to the idea of health and feeling ok.  I have steered clear of writing because most days I really struggle with what to even say.  But I do find writing it out, seeing it in print helps me to work through it.  Maybe it seems strange to some to have it all out there, but there is a part of me who believes I am supposed to be transparent.  Those who know me know how awful I am at this.  I love to hide behind the "Oh I am doing great" face.  This is my place of honesty.  I do not have to feel the guilt of not having it all together.

I am not really sure about the path we are on right now.  I will say it has been difficult.  Brooke thankfully is thriving in many ways.  School, although a challenge, is going good.  She has dealt with a few health issues.  So far they seem to be related to diet.  We cut gluten out and she is doing much better.  She is seeing the allergy specialist I am seeing in February.  For now she is swimming to continue to strengthen her neck.  I am amazed every day by her fighting spirit and willingness to push through.  Chandler has been struggling.  He has been complaining of headaches even when he is in fun environments.  He has an MRI scheduled for the end of December.  He also is seeing a geneticist in December.  When Brooke was diagnosed all those years ago, I never dreamed my whole family may one day share Chiari and have another Chronic illness like EDS.  If I am being honest, dealing with one chronically ill child is difficult...dealing with 3 plus myself seems impossible. I know it is not but the scheduling of appointments alone is staggering.  Add into that the learning challenges we also face and my days are full before I even blink.

Aidan is my kid I am most worried about.  His headaches have become much worse.  He tries to be a typical boy but pays for it later.  A 2 hour play date with a friend one afternoon, lands him in bed the following day.  School was not working as he was consistently missing.  We are now home schooling.  This adds a whole new layer of crazy to our life.  With me working part time and also needing to be his teacher, plus staying on top of medical issues....I am beat.  Many days I just tell the kids I need them to play quietly so I can rest.  I push and push until my body just crashes.  Sometimes in the midst of the crash I wonder how much longer.  How much longer will my body allow me to treat it this way.  Aidan has been adapting well to being home.  Many days we just lay on the bed and read.  He understands my pain and I understand his.  He and I will both be seeing a new geneticist in December.  We are hoping to be able to travel to NY in the spring to see our neurosurgeon.  I worry about surgery for Aidan.  His surgery will be more complicated than Brooke's was because of the EDS.  I keep praying that swimming will strengthen his neck and head, letting us wait a little longer for surgery.

About 4 1/2 weeks ago I started on a pretty strict diet.  I am doing all of this because of my severe reactions to medications, smells, and foods.  My body has become so reactive to things in my environment it was becoming difficult to go places.  There are certain stores I can't even go in because of smells.  It is horrible torture to be around people who wear heavy cologne.  And I so hate being rude and saying anything.  My reactions though can be anywhere from a skin rash to headache to nausea and vomiting.  Yes just from a smell.  I am not a hypochondriac and it really is not helpful to be called that.  Although the reactions to smells was annoying, my real concern was the reactions I was having to medication.  I broke out in a rash from Zyrtec.  Did you know you could have an allergy to allergy meds?  Several of the meds I was taking on a regular basis caused reactions.  My one doc office did not believe me.  The nurse swore there was no way I was having a reaction to the med.  I asked her if I could please send her a pic of my face.  She called and apologized, telling me she had never heard of someone reacting to that med.  Thankfully I found the brilliant allergy doc in Akron.  He has been a huge blessing.  At this point I must be very careful what meds I consume.  There are only a couple of antibiotics I have not reacted to.  So I researched and my brother researched.  We came up with an elimination diet for me.  It started with 2 weeks of only chicken, leafy greens, herbs, chicken broth, water, and a small bit of tea and coffee.  Those 2 weeks were a bit nuts.  I felt like I was hit by a bus.  It was like 2 weeks of the flu.  Slowly now I am adding in foods.  But honestly if I slip up or get something I should not have...I know it.  The one thing I know my body reacts crazy to is sugar.  And yes I am sure many of you are wondering....no Dr Pepper.  After not having it for over a month, I am really not missing it.  The main thing that is so difficult is all my food must be made from scratch.  I have to plan ahead if I am out.  It is just one more thing I must be committed to.  Even with this food change, I am still reacting to things.  I still need to take one benadryl every morning and night.  I also found out my Vitamin D was super low.  It should be around 40 mine was 8.  My one doc said it was the 2nd lowest he had ever seen.  I am on pretty high dose of Vitamin D now.  Just hoping my body will absorb it like it should.

I have no idea if any of this makes sense.  I used to be able to put thoughts together.  Now I feel like I ramble.  Probably because in my brain that is exactly how it is....a rambling mess.  I have been trying to give myself permission to just not do certain things.  I try not to live by a list anymore.  Because honestly the lists become so long and overwhelming they make me crazy.  I try not to worry about cupboards being in a disarray or toilet paper not on the roll.  I try not to be angry about our circumstances, or regret not being able to do certain things.  I try not to be sad when I just can't do whatever.  I desperately try to find joy where ever I can.  But let me just say I am so thankful for those people in my life I can be completely real with.  The ones who hear my heart of sorrow.  The ones who do not judge me for decisions I make.  And the ones who will listen even if they have no answers.  Having people like that in your life make days like today bearable.

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

Whenever I turn around....

I have been trying to update this page for a few days now.  Honestly I was having a hard time focusing.  My heart has been broken and aching for the families in Iraq....quite truthfully my struggles seem petty.  And they are.  Not that what our fam goes through is not a struggle or even hard for us.  It is.  But when I put it into perspective....we are beyond blessed!  I complain of medical bills but we have doctors to see.  I complain of pain but I have bed to rest my head.  I never want my words to seem like complaints but tiny prayer requests or updates.  It is humbling to live in a place where medical care is truly amazing and I have the freedom to type out my beliefs.  My prayer is my children never take it for granted.

The past few months have done a flip on us.  We had a little over a month when we first moved where I felt truly great.  It was a blessing.  I am back to struggling with several health issues.  As of right now I am not sure what is causing what. I still have the awful head pain at the base of my skull which increases whenever I move.  I have a rushing in my head whenever I change positions.  This makes me light-headed and ill. I also have a whooshing sound in my head.  Almost like my head is filled with water or I am underwater.  This is not something that comes and goes...it is constant. So sadly it is quite maddening.  Of course I am still dealing with joint issues but these are minor in comparison.  I am scheduled for a sleep study because when I roll over in bed my throat begins to close up. This makes breathing hard.  My neurosurgeon also wants new MRI's and a lumbar puncture.  I have several appointments with different docs over the next few months.  I will be seeing a cardiologist, neurosurgeon, sleep specialist and mast cell specialist.

Moving closer to everything has been huge though!!  Being able to get to places faster makes life so much easier.  I do spend a good deal of my day in bed, resting.  It is very hard to hold my head up.  I have been told I can't give up.  Just to clarify: I am not giving up or do I ever plan to.  But sometimes my fighting is simply to feed my family dinner or do the laundry.  Our family does not have the ability or resources to go to one doc after another.  I will be seeing these docs in the fall to try to create a game plan. I have learned  though part of my fighting may be to just find a balance.  This balance to others may seem like giving up.  It is not.  It is learning to function in the body God gave me.  I am not convinced one more surgery will help...or one more procedure.  I am convinced my family needs me and I need them.

Aidan and Brooke both had MRI's done in June.  The neurosurgeon read them and they are both abnormal.  Both have increased Cranial Instability.  They have a retroflexed odontoid (which we did know). And their GO scores (for those who care about this ;) ) are Brooke- 9.4 and Aidan- 9.8.  And a CXA of Brooke- 128 and Aidan- 130. Thankfully Brooke's herniation is stable and Aidan's has only changed slightly.  All of this means they most probably will need fusions.  They could be soon but the plan is to wait as long as humanly possible.  This is why both of them still have bad headaches.  Brooke will continue to wear her collar and Aidan will be getting one.

Both kids are starting school.  My mama heart is broken and excited all at the same time!  I am tearful over sending them away from me.  But hopeful and excited for the wonderful, new opportunities they will have!  I am also beyond excited for the extra help the schools can offer.  As of now we know Brooke has a form of dyslexia and aphasia.  Aidan was tested last Wednesday.  Although I have not received report yet, they believed he also had dyslexia.  I also learned while sitting listening to the doctors, dyslexia is probably why I struggled with reading.  Due to Brooke's health actually being a little better than Aidan's, she will start school on a full day.  Aidan will most likely start at half days.  He will have his core subjects with a teacher one on one here at the house.  He will then go into school for the other subjects.  Hopefully by the second part of the year, he will be ready for full days.  I can't say enough how amazing the school district has been!!!  I also can't say enough about the NeuroDevelopmental Center at Akron Children's!  Both have bent over backwards to help me understand all this and find a way to help the kids.

We have seen so much change for us over the years.  The constant is....we turn around to blessings always!  Friends who drop off dinner just to help out.  Family who transports us to doc visits and the store when we can't.  Church who prays faithfully for healing or at least acceptance to move forward. A van gifted to us and keeps on running even when I think it will not.  A job that is far but steady.  Doctors who may not know the answers but stick with us.  Friends who watch the kids for free so we can go to appointments. A once a week coffee with a friend so I do not have to pay for psychological help. A hubby who stays and provides even when the burdens seem never-ending.  A country where I can live in a house with heat and air.  So thank you!  Where ever you fit in this list...thank you!!!  You are a blessing to our fam!!

a break from blogging not life

I took a little break from blogging and I plan on keeping it up.  I just wanted to give an update since I have not posted since our move.  Life has been capital C..Crazy around here.  First the move.  Which I can't say enough how much I love it here.  Not sure the whole fam agrees but everyone is pushing forward.  It is different to live "in town".  We did not have a ton of land but had a lot of privacy.  This house is not making us sick though.  That is the big neon sign news!  There is no mold and where there is no mold...there is a happy mama.  

Right after we moved, Aunt Amy had to come stay with us.  The group home she was in was seriously neglecting her.  She was exhibiting behavioral issues we had never seen in her before.  It was quite the adjustment to have her here.  While she was here, Brooke was displaced to couch and I felt like I ran from one meeting to the next.  We finally figured out the best solution for her and Amy moved into an adult foster care home.  She is doing great and healthy again.  We are still busy trying to switch everything over.  Moving her out of the old home...into our home...and then to a new home was a huge undertaking.  Every box I carried I prayed would not do me in.  Her room in the group home was filled with dust and dirt.  It was so not a pleasant experience.  

3 days after Amy moved out, I started babysitting 2 littles.  I love it!!!  They are friends we met in Athens. Small world, right!?  They now live up here too.  Although by night I am completely beat, having them here is so much fun.  I especially love the cuddles of the tiny one.

Aidan and Brooke are enrolled in school for next year.  Yes I know I have talked about this before but this year is for real!  Promise!  It needs to be.  I have learned one important thing over the years....I love having my kids home with me but I am not a teacher.  So now we play race to catch up before August.  I am a nervous wreck.  I know how much ground we need to cover and the rest of the fam is like "ah it will be fine." It will not be FINE!!!  :) We need focus, learning, and a caffeine drip.

As I said before, I am doing so much better.  I believe it is the combination of no mold, the new medicene, exercise, and trying to eat super healthy.  This does not mean I am "cured". Sorry folks...no cure.  I do feel almost 150 times better than before.  I can get through a typical day without crashing.  By night every joint is screaming though.  I am completely off pain meds which makes many nights horrible.  Somehow I push through and manage.  I am thankful for the more energy and the semi better health.  This normally means those around you expect you to be at 100% when really you are only functioning at about 60%.  

So yes I do feel worlds better....but I still can't function the way a "normal human" would.  I still have quite a few limitations.  And honestly I am starting back to my old ways of over committing.  I am not stopping when I need to stop.  As a family we have re-defined the super important things to our fam. Some of these only rate as important due to need.  We are only going to focus on these things.  This means stepping away from many things, saying no to others.  One thing I am stepping away from is this blog.  I honestly do not even enjoy posting here anymore.  It was an outlet when Brooke was so sick.  Now I just feel like it is random words on a page.  I love to write, and want to keep writing.  I will figure out how writing fits, it will just not be here.  I may occasionally come back here to post health updates since we have so many awesome people who pray for us.  But for now...this is it.

Thank you all for you love, prayers, and support.  They have meant the world to us!

Why we are staying home tomorrow...

Tomorrow we were headed out to Maryland to see a Neurosurgeon for me who specializes in Chiari and EDS.  I have to be honest this appointment has been looming over me like a bad dream.  I have heard amazing things about the doc, so it was not that.  I just had this sick feeling...the feeling you have when you really do not want to do something.  First it is a long drive, plus the expense. We are in the middle of moving.  This doc is not covered by insurance.  Just to see him is $600.  And the biggest reason....I do not want another surgery.  I really have felt that surgery is not the answer for me right now.  

Thankfully God must have been thinking the same thing.  I met with an awesome pain management/neurologist last week at the Cleveland Clinic.  I will say right off I was very nervous about this appointment.  I worried he would not hear me or worse not help.  Before going in I just prayed that I would hear him and he would hear me.  It was one of the best, informative appointments I have had.  No we did not see eye to eye on everything, but we both took the time to listen.  

I am not going to go into great detail but wanted to give the basics.  He feels like I am having several different kinds of headaches.  I agree.  He thinks I am having some nerve related headaches in the back of my head into my ear.  These are related to my surgery.  He feels like I am probably having some chiari related headaches.  And he feels I am also having migraines.  I was not sure about this.  I have had migraines in past but they have never felt the way my current unidentified headaches feel.  He explained that a person can have various types of migraines over their lifetime.  He also felt like I may be having headaches due to the pain meds I am on.  This also makes sense since I do not tolerate pain meds well at all. He would like to focus on the migraine type headaches, and pain med related headaches first.  The Chiari and Nerve headaches will be slightly more complicated.  He also felt the moldy environment is contributing to my overall poor health.  

The first thing he wanted to deal with was my pain due to my EDS.  I take the pain meds to help with the extreme ouch in all my joints.  He recommended a med that will help inflammation and will help me get off pain meds.  He gave me a schedule to help me to safely come off pain meds.  He also prescribed a steroid to help with the headaches as I come off them.  The next step was to try a migraine med on the headaches that might be migraines.  He also wanted me to start magnesium as this can naturally help migraines.  Other things he recommended- physical therapy, massotherapy, and water therapy.  I need to get some weight off so my joints can be healthier.  What I loved the most is he said his hope would be that I could eventually manage my health through PT, exercise, and eating right!  My kind of doc!!  I would love to kick the meds to the curb!  

We talked about other ideas for the nerve and chiari headaches.  He really believes though getting these other things under control will only help those issues...plus he wants to focus on certain things.  I could not agree more.  He strongly encouraged I wait for any kind of surgery until we get my pain under control.  Again totally agree!

The drive home I chatted with my mom and felt right away I needed to postpone the trip to Maryland.  I have felt on edge about it for awhile now.  The doc in Maryland will be there in 6 or 8 months if I still am struggling.  I want to do this right!  I want to have the possibility of no new surgeries.  And I am happy to report some awesome news!  The med for my EDS pain is A-Mazing!!  I have literally no pain in my joints! None...not even when I get up in morning!  Plus much of the clicking and subluxations I was having are settling down.  I do still have bad neck pain and some lower back pain, but seriously....I am thrilled not to feel like I have a 90 year old body!  I have had a few headaches.  One went right away with migraine med.  The other 2 have not.  But I am confident with time we will get the headaches under control.  Another cool part is I have had NO pain meds since Friday night!  WOW!  No not everything is fixed, and I will need more time to figure this all out.  This, this healing is why we stay home tomorrow....to move forward and not look back!  

Crazy Little Thing Called Love

Your watching a romantic movie....it is the time in the movie when the 2 leads realize they are destined to be together.  Everything falls into place, the loves fall into each others arms, the music starts, and the story goes on happily ever after.  You wipe away the stray tear from your cheek and sigh. Yeah that is totally not how it happens in real life.  I mean maybe things start out all romantic (not in my case!) but trust me it will end fast!  True love stories are hard, dirty, and rough.  Some days they will make you cry, and others scream really really loud.  But the cool part is you have another human to be there, in the dirty trenches, crying right along side you!

Yesterday Tim and I celebrated 12 years.  You want to know what we did?  We went out for a late dinner on Saturday because hubby had to work late.  Got home, I was way to tired to sit upright on couch.  Hubby carried our TV into bedroom to watch a movie.  We fell asleep.  No romance, no music, just sleep!  Since no kids were in the house we slept in.  In fact, I was so sick I spent all day in bed.  He cleaned, and rested.  Kids came home late because my amazing parents kept them all day!  Snuggled with kids and sent them off to bed.  That was our anniversary.  And that my friends is how we roll in our home.  Nothing fancy, nothing special...but it works!

When I first met Hubby I was unsure. He did not seem to talk much.  I mean he was cute, but thought I would let him pursue me.  So a year later (yes girls, a year) he asked me to go with him to his friend's house for a party.  Like any smart girl would do I asked my friend to follow us just in case Hubby was a psycho killer and decided to dump me on side of road.  Thankfully he was not.  A few months into dating Hubby said he wanted to break up with me.  I very calmly asked why.  He said "I dunno."  I told him that was dumb and unless he had a good reason we were not breaking up.  And here we are all these years later.  Ah can you feel the budding romance in this story?

If you are waiting for the part where he swept me off my feet....well it is coming.  I am very practical.  Most girls may be drawn to a man for his views, his looks, or possibly even his money.  Hubby likes to bring up all the time what I find is his most valuable quality...his stable job!  Yes folks it is true.  I fell in love with Hubby because he was a job holder.  And when I met him he had his job for several years.  Now many of you know we have dealt with job loss over the years.  Hubby never lets this keep him down!  He will be out there looking for something else to support his fam.  See for me it is not because I want to be "supported".  I loved working and having a career.  I just wanted to make sure Hubby was not a lazy person I needed to worry about.  He has shown time and time again how much he cares for us by long hours, working in not so great jobs, and driving long distances.  This is love! Not fancy flowers and expensive dinner love but "if it puts food on my family's table I will do it" love.

In the movies and tv proposals are over the top.  Men put great thought into where it will happen, how they will ask, and even who will be there.  Honestly I had half a mind to just take matters in my own hands and ask him.  But I waited patiently until he planned it all out.  One night while visiting him at his duplex...we each lay on our "own" couches. Even back then I was not much for cuddling.  I liked my own space, so we each had a couch.  We were laying watching ER.  At a commercial break Hubby came next to my couch and said, "Hey ya wanna get married?"  Now how could I possibly refuse?  Of course I said YES!

When we said "I do" we never dreamed what our life would hold.  We hoped for a nice house, healthy kids, and great jobs.  Just because it did not turn out this way we never questioned each other.  Loosing a job, watching your baby have brain then spinal surgery, having to move away from family, having to give up a career because of poor health, saying good-bye to your home because it is making you sick, and watching your kids deal with chronic illness everyday gives you shared bond that is hard to even explain.  To top all that off, laying in bed why your Hubby washes dishes, puts kids to bed, and cleans up house after working a 10 hour shift is humbling.  He comes in and in a sweet voice says, "Do you need anything?"  He wipes my tears at 2 am when the pain is so bad I can't sleep.  He strokes my back when I have nothing left to give and assures me it will be ok.  He tells me I am beautiful even when I have gained 40lbs, and never do my hair.  He reminds me this life is precious and we are a team.  A team that fights, that hurts, that yells, but a team that rallies together and pushes forward...always!  This is my love story and I am thankful it is just a little crazy!

My Grandma wears High Heels and Lipstick

Yesterday my grandma turned 90! 90!!! That is nine decades of seeing fashions come and go, 9 decades of meeting people, 9 decades of a wonderfully filled life. I did not get the chance to be with her on her birthday. Sadly I live many states away. I wish I could sit with her and tell her the impact she has had on my life. The ways she has made me a better person. How she inspires me to dream big and shoot for the stars. I am honored to be her grandkid....to have a chance to be part of her 90 years of life.

Most of my life I have lived a 3 day drive from my grandma. My parents tried to get us there as much as they could. Visiting her was like a dream. She would pull me up close laugh on my cheek, I could smell her makeup and sweet perfume. She made me happy. Grandma is(yes I said is) a Mary Kay sales director. She still wears the pretty clothes, fancy earrings, and always looks stunning. She lives in her own gorgeous home, and has a decorating sense I did not inherit. She loves people and people love her. She can help a girl who feels lacking feel beautiful inside and out. Not by simply applying makeup but by inspiring them to be great. I am pretty sure my grandma is the one who coined the phrase, "A little bit of lipstick changes everything!"

If you know me, you know I am not a makeup girl. In fact my makeup bag has 2 colors of eye shadow, one blush, powder, concealer, mascara, and one tube of lipstick. I did not grow up to sell MK like the majority of my family. But the lessons they teach, the strong women they are did not escape me. I look at my grandma and the 4 daughters she raised. All of them are women I want to be like. Women who are independent, loving, and rock stars in their own ways. My grandma taught us all to find our dreams and to not let anyone tell us they are impossible. To surround ourselves with people who will treat us right, love us for who we are, and help us climb the ladder of our dreams.

I wish more than anything in the world to have had the chance to live close to my grandma. I wish instead of hours and days, I had the chance to spend a lifetime with her. The time I do get with her is a treasured time. My mom and dad flew to her 90th birthday last weekend. My brothers and sisters, and myself, were her only grandkids not there. We all wanted to be there but sadly flying is not in any of our budgets. We were asked to write some memories about Grandma. I am going to write them below. My Birthday Wish is for at least one more decade to spend with my Grandma.

A few facts:
My grandma has 4 daughters and one son. She has 13 grandkids and 14(plus one on way) great grandkids
Grandma used to own 2 roller skating rinks in Texas.
Grandma was a 4-H leader, military wife, and still is a Mary Kay Director.
She has lived in 4 states but loves the mountains.
Grandma is hopelessly addicted to Dr Pepper and pie.
Even at 90 her eye for fashion is pretty amazing.
She is the most stubborn woman I have ever met and I admire this so much!

A few Memories:
I remember eating breakfast on her back deck and staring at the mountains.
I remember sharing an afternoon treat of DP and cookies.
I remember going to the Village Inn at midnight with my grandma, mom, and aunts. We would eat pie and laugh so hard.
I remember loving her home. Before we leave I sneak pictures. When home I can look at pics and remember her, the smells of her home, the warm, safe feeling I have when I am there.
I remember the trip I took in college. It was one of the best times in my life. Her and I spent a week together. We traveled to Wyoming, into the mountains, ate dinner out, watched movies, and shared our lives.

Grandma I love you!

Sitting on the Fence

The last few weeks have been rough. Many have asked how they can help or specific prayer requests. Sometimes it is hard for me to figure out how to have others help. Not that I do not need it, or want it. I guess I have always done it, and so now trying to figure it out is really hard. We try to manage. Our family has become good at adjusting to this new life situation we are in. The Hubby keeps learning new ways to help me around the house. The kiddos are figuring out my "I can't move my body" look. Thankfully Brooke has been feeling good. She gets a few headaches here and there, but manageable. She is Chan's second mom and my comfort(she rubs my back and brushes my hair). Aidan has been struggling quite a bit. He has a headache most of the time, and his EDS is causing him pain. Lately he does not do well in stressful situations, and we are trying to help him cope with his pain. Chandler tries to be helpful by being my cuddle buddy. Sometimes I have to quietly remind him mama needs the bed to be very still. I then hear his sweet voice say, "Sorry mama, I sorry you don't feel well." He loves to stroke my face with his little hands. I try to treasure that but honestly sometimes I wish he would not touch me. I know terrible to wish your child would not touch you! But when every fiber is screaming, a little touch can be so harsh. Today my little man lit a candle for me at church. He saw his big sis do it for my friend who is sick. He said "I can't tell you who I light it for. It is a secret. I want to pray for you cause you hurt." Love all of them and their sweet hearts of kindness.

This post is going to be a here is where I am at post. Nothing fun or revealing. Just places I need prayer, and hopefully a bit of a testament on how people with my illnesses need more people in their corner. So I understand if you want to duck out now. Some illnesses you go to the doc, they find it, they treat it, and life goes on. Some illnesses need more aggressive treatments and of course you cling to the hope that in the end the treatment will work. With 4 of the conditions I have, there are few options. I had the c1-c2 fusion over a year ago. I am having severe pain in my neck from it. When Dr D did this surgery he told me the one screw is laying on my major artery in my spine. But he assured me he could remove it after the fusion took. So I thought this pain was temporary. A few months ago Dr D was brought up on federal charges. I have to be honest, at first I was a little annoyed he was not allowed to do his job! I mean he was the ONLY orthopedic surgeon who knew about EDS and helped EDS patients. A few weeks ago, Dr D decided to flee the country. Sadly he left many patients just hanging. There are many reasons why he had his licensed taken away, and I am not going into all these details here. The main thing for me...I am in pain and have no one to remove my screws. You may think I am exaggerating when I say no one...I am not. Possibly there is a neurosurgeon who can help...I will get to him in a minute. As for Ortho docs, most will not touch EDS patients and the ones who will have very little knowledge of what EDS is. This is a problem because they can do more damage than good. A good friend who had the same surgery as me needs her hardware out too. She saw a very good doc at a very well respected hospital. She was treated very poorly, and he gave her few options. These "other docs" just do not exist.

Moving on to my severe headaches. So my neck hurts every time I move my head. Some movements are not to bad, but some will literally make me feel faint. I get a searing hot pain throughout the back of my neck. It goes up behind my right ear and I feel like my ear drum is exploding. The headache that follows is a very intense pain from neck to back of skull to ear to forehead. There is nothing I can take to relieve this pain. If I get this headache, I must lay very still and wait. It becomes some of the worst hours of my life. I believe this is caused by the chiari and high pressure in my head. This is what Brooke's Neurosurgeon Dr B feels too. He recommends a decompression of my cerebellum. I agree to a point. My fear is the instability in my neck due to the EDS. I worry the decompression will cause more instability. I asked for a fusion of c1 to cranium at the same time. He recommends the decompression, then we can go back in and fuse. HHMMM well that would be 3 surgeries to that area. I would rather get it all done in 2. So this leads me to my other neurosurgeon option, Dr Henderson. He really is the last hope for most patients in my position. He is very good, but very busy and expensive. He is in Maryland so that means more travel. But after him...there is no one. Please hear me when I say this. I do not mean I will not go to anyone else, I truly mean no one else will see me, or has said they can't help me. My appointment with him is in March. I am holding my breath that he will combine removing my screws, doing a decompression, and a c1-cranium fusion all in one sweep. Or he will look at me and have another amazing solution.

I said earlier Aidan is having pain from his EDS. Poor guy I completely understand! I am not sure if it is all the weather systems this winter, but my EDS is flared up. It is quite odd for me to lay in bed, take a deep breath, and have my spine crack all the way down. I woke up this morning with my arm hanging out of socket, my poor shoulder. Aidan and I both see our geneticist in February, yes another trip to Cincy. I know he will be disappointed we have not started PT. Sigh. I will just have to inform him the money tree I planted has not grown yet. I do hope he will have some ideas on how to help Aidan manage his pain. Seeing your child suffer is horrible. But the big blessing here is our doc! I am so thankful to have Dr Neilson and his great knowledge on EDS.

Right now I am managing my POTS. I have had a few little episodes but as long as I keep my fluids up, salt up, and take my medication I do ok. On the other end though my Mast Cell is causing breathing issues and major flare ups. I believe this is due to the mold we have in our basement. We are in the process of figuring out how to move. The constant mold entering my system leaves me wide open for more attacks from smaller triggers like food and smells. I learned to be more in tune to my body this year. I found several triggers. One is the soap aisles in stores. I have to avoid them. Another is the Dollar Tree. Funny I know. But I have had 2 severe reactions while shopping in the store. I try to make all our own cleaning supplies but this becomes exhausting. In order to help keep these attacks low I really have to do this. Now enter in the doc who can help with POTS and Mast Cell. Dr Grubbs is in Toledo. He has done extensive research in both of these. He also works closely with my geneticist. But just to see him there is a year long waiting list to get a call to make an appointment which might take another 6m to a year. I am currently on the waiting list. I hear you say, "Oh come on Melinda...there must be another doc!" Umm no there is not. There is a local doc who works with POTS patients. I have heard he is good. But when I called his office they told me the first thing is a tilt table test. This is a torturous test for someone with POTS, but someone with Chiari and EDS too...live threatening. Thankfully I know this because the doc did not. My Neurosurgeon immediately said, no way! So I wait for Grubbs to call.

Honestly most days I see myself sitting on the fence. In front of me the beautiful field with open spaces and freedom. My children running and playing. On the other side I dare not to even look. I sit perched on the hard fence praying to fall into the meadow. The fence hurts so much, and I want off. Reality has showed me that I need to bring the blanket up on the fence though. I need to invite others to sit with me so I do not become lonely. I need to find ways to make the fence as comfortable as possible. Even if one of these docs has one answer that will make one little thing feel better it is HOPE. But may leave me still perched on the fence needing more help. Thank you for praying. I know reading this is possibly a turn-off. I know most may not want to hear about the complaints, "Just get up girl and move on!" Believe me I would if I could. That is why those who sit on the fence with me are so very dear!