Closing out 2009!!!! Thankful

I had my follow up with Dr Mullins (NL) whom was the original NL that sent me to Dr Heilman. I was so hoping to get some steroids to help me get more done. Oh no he tells me, I push the window enough! so I went back on Neurontine and Clonazapam for neck spasms. He of course was correct.....these 2 make a world of difference! The stabbing pains from Occipital Neuralgia have gone way down, makes me a little sleepy at times but really that's not a bad thing!

I am still struggling with the pressure behind my right eye and fluid feeling in my right ear. Honestly if I look over all my MRI / CT reports....each one states "Chronic thickening to the Sphenoid sinus". I am going to talk at some great length with my PCP during my appointment in January about this. Give me something.......figure it out! Help dry up and clean out my sinuses, lets just see if this is it! I will also ask my eye Dr this Friday if he can take a deep look into that eye and see if there is any signs of my sinuses in trouble! Gonna bring him the scans and reports. Enough is enough! The ENT I have had since 2006 SUCKS and I have refused to go back.....he is OLD and way to outdated for me!

In 2010 I don't want so many specialists, Endo, GI, ENT, NL, PCP and NS. Spoke with my PCP and he has agreed to monitor everything with the exception of NL & NS. If he feels I really need to go I will but ONLY after he has consulted with them via blackberry, email and or phone first! At this point it is mostly blood work and annual Endoscopy for Barrett's.

I hope I have done a good job with being Gluten Free, I go the 18th for new Celiac panel. Not sure if it's the right choice but I have stopped taking my Thyroid and Vitamin D for about a month now.....ya I feel it!! :( However I do not see the sense in having these things rechecked every 3 months because of the Celiac. I did discuss this with my PCP, he wasn't over joyed but understood the concept, get a true baseline since I am Gluten Free! I will be glad to restart taking the Thyroid meds....arghhh.

It was my goal in 2009 to start up a support group here in Ma. Well I have not gotten it off the ground other then support to all whom need it via calls, emails and even follow up with Dr Heilmans office. Perhaps it will happen in 2010. I am happy with the ground work I have gotten done, the wonderful people I have connected with so far. When I spoke to Joyce, Dr Heilmans NP yesterday, they are pleased about all the referrals and I am so grateful when a new patient calls.....tells them I referred then, there is not a 30 day wait! When the actual support group starts, I hope to have the help of his office with education.....

I seem to have settled into a good routine, walk 2 days per week, split up the weekly errands between 2 days as to NOT get over fatigued from driving and spend the other 3 days for caring for the house. Daily rest for about 2 hours really helps in recharging, keeping my head and neck from seizing. So far it is working well for I am able to do all the things I want and need to do! It's when I step outside this schedule and over promise, over do that I am laid up for a day or two! It truly is in the planning, rethinking how to tackle stuff that has been of the most benefit to my health, oh ya and learning the LIMITS! That took the longest and has been the most painful part of this journey.

2010, what will it hold? My son is getting married next Fall! I hold to continuing ground work to create a support group. More improvements to my house. I will golf a good 18 holes, tried it once this year and it was to early.....a little travel with my husband!

It's been to long

So I have been trying just to put most medical stuff away. Move forward. Test came back positive for Celiac and Barrett's. Have been Gluten Free since May. Really this has been not hard for me at all, just something I gotta do, so I do it.

I waited patiently for the 6 months till I started doing more around the house....paint, decorate, gardening, fishing and golf. Now it's almost 1 year since PFD and I don't think I over do things BUT I must be.

I am scared. Doing daily chores are getting hard. Driving is difficult. Up and down stairs pound in my ear and eye. This past Friday set off a host of old feelings in my head. Thankfully I am sleeping good so I do get recharged.

Saturday night I had one of those Chiari HA's from hell. My eye sight went all hay wire, couldn't make out the remote clearly. It is alot of pressure only on the right side. My eyes zigging back and forth.

I go for my 1 year follow up on Oct 5th. So this should be a good appointment, I hope.

It's not 100% like it was before. Not at all. It's very weird, like I felt so much better right after and for the first 6 months. I think I want steroids again. Might be because I am more active it gets swelled up, don't know but I am gonna ask.

I can't hide from this.........it's here to stay. I have lived in a fantasy world thinking oh ya, it's all good. It is so much better but not good right now.

I do pace myself every day. I still need a 1 hour lay down nap everyday. I plan out projects. I can't do nothing, for my personal spirit I have to do things. I have let go the wants of BIG projects. Shit........................

It's hard to tell many people. I really don't say much about it. Hubby knows when I have a bad day and he insists I rest! Love him for that. I keep thinking positive, the glass is always half full to me. I was in a dark place once and I aint going back.....

BUT, I can't keep my fears bottled up either. So here I am poring it out. don't even know if anyone reads, don't really care. My safe place to say, I am scared..

I have so much to be thankful for. Great husband, wonderful kids, excellent medical care...truly the best doctors. I love my new home. Funny animals. Just the most supportive Mom and Dad. I am thankful so why am I scared???

43 and have a difficult time driving, shopping alone, my spelling is going back down hill. I have never thought of myself as loosing Independence, being married for almost 27 years....the old fashion views I carry. I am not in dependant. Sounds corny.....Dave is my partner in all things so I don't have fears of this. Now if I ever needed help peeing.........that's another story!!

I am scared my brain isn't gonna cooperate with me. The heart and brain are NOT on the same page. One say do this the others says are you crazy. So I am struggling, I want to be fit and in the best physical health I can be. Not a jacked person, just able to handle stairs, hills stuff like that. it's the right thing be in shape. Well my brain says you take one more stair and I am gonna pop your eye out and burst your ear drum......so I ignore. Look at me now!

In a wait mode right now

I had the biopsy done. It went easy with no complications. Takes 10 days for the pathology report.

What I do not understand is why I have to wait on all the lab/biopsy stuff before the GI treats for B12 deficiency, does it really matter if it is PA or Celiac. The chronic fatigue and pain in my bones is really holding me back. I am spending more time in bed then not. I felt better right after brain surgery then I do now...

I take Liz to the Endo tomorrow so maybe I can get her to look up the labs and see whats in.

She seems to be improving. The learning can be a slow and difficult process. Her medication I think we have under control, what works and what doesn't. I took 10 inches off her hair and this seems to help with sleeping. The B12 shots have improved her body pain, some of her nerve pain and definitely her ability to sleep normal hours.

My scalp is healing. Less areas of numbness which I am very thankful of. I still remain head ache free and blood pressure is constantly stable. I can not believe it has been 6 months since surgery! Everyday I am more and more convinced surgery was what I needed and that it worked. Dr Heilman said 6 months to really see.....he was correct!

The house is full of sweet little baby cry's. We had a litter of kittens. Momma had 3 babies and what joys they bring. Our puppy is growing so fast. Seems like I am back to the days of toys for the kids. Only they are all chewed up and hidden everywhere. What I love is the afternoon puppy nap! My excuse to nestle with him and nap!

Ups and Downs

It's been a challenging 19 days since I was last here. A lot going on with both my daughter and I.

My newest lab results for Vitamin D have come up to 41. This means I am no longer deficient. My new Thyroid level is in the normal range with my new dose as well. I did test positive for Celiac Disease and am waiting for an appointment for having a biopsy done.

At first when I got MY news I was numb then pissed then depressed. This pasted as I received much support from friends at ASAP and my family. Now I have to learn a new way of eating. It's better then having to deal with NL's and Chiari! So I will survive and hopefully be healthier.

Follow up appointment with daughter with her NL was good and bad. The good is he supported us seeing a NS for a second opinion at Tufts. The bad is he believes her Trigeminal is a symptom not the cause. He has set up an Autonomic Test and EMG. We go this Wednesday the 1st of April. She is also to have another set of MRI's in 3 months for a spot they found.

We did go to Tufts, the NS was very pleasant and helpful. He told Liz that he feels TN is a symptom not the cause. Hearing this from 2 separate Dr's leads us to believe it true. He was very detailed in viewing her MRI study. He did suggest she has Chiari 0, of which I had thought as well. Recommended her to have further studying done to determine where her pain is coming from. Also pointed out a small spot on the left side of her brain that needs further examining.

It gives me some comfort that 2 separate hospitals gave pretty much the same diagnosis.

We have seen much improvement with Liz, taking the anxiety/depression medication. She is much more relaxed and doesn't have uncontrollable crying. It will make getting a proper Dx that much quicker I think, because she is calmer.

It has been a lot to take in. Just when I think I am ready to handle more....I have had a few brake downs where I just cry. Seems like getting healthy is with in reach, then it gets snagged back a few yards. I wished I enjoyed drinking some nights! Don't want a hang over.

I just gotta keep my faith and steadily move forward. Some days are harder then others but the sun keeps shining which is a good sign!

Spring is in the air

I am recovering very well. Still having trouble with the Vitamin D, haven't gotten my level into the normal range. My Endo doubled the dose and I am retesting in a few weeks.

The CM seems to be very much under control. Each week I am able to do more activities, carry more weight. My driving is back to where it was way before all this started, no more panic attacks or near fender bumping in parking lots!

My daughter has had her MRI, has been dx with TN. The medication is really effecting her in a negative way, she sleeps most of the day. It has not controlled the pain even going to max doses. I have her an appointment at Tufts with Dr Yao, he is the assistant professor to Dr Heilman. We go the 24th of this month. We are hoping she is a candidate to have Micro Vascular Decompression, by her MRI the V, VII and VIIIth nerves are involved.

My wonderful son in law brought home a puppy....his name is Reese. He is a lab/pitbull mix. What a handful he is. Loves to run and play. He keeps me going all day long. With the weather getting warmer we have started walking. He is very good on the leash and I so enjoy walking again, so I have made HIM part of my rehab! My little motivator!

The new PCP seems to be working out well. He has been very helpful so far. He very much cares about Liz and helping her with her many struggles that she has had to endure. FIRST Dr to tell her that most of her problems are due to the last surgery. Put her on Zoloft and this is helping.

While I was surfing the net last night, I found that this August in Boston there is going to be a huge convention of NS from around the world. One of the work shops is about CM. I am going to write to the Dr in charge of this workshop and request they spend some time covering HOW we are treated....I got plenty to write down. I would like to find out HOW I could get an invite and sit in on that workshop.....guess I got some work to do there.

I hope all my fellow CMer's are getting ready for spring! It has been a very long hard winter!

Fears and challenges

I can not remember when it started. It seems to have been for sometime. She has always been achy in the neck, daily head aches, trouble sleeping. When we lost power in December I think is when it really started to show.

I am speaking about my youngest, Liz. She is 22. We have made several trips to the ER since Dec 26th. Now we go to a NL this week. We are not sure what is going on, her CT shows Cerebellum hanging like all of us CMers. We won't jump to a conclusion till she gets a full set of MRI's. Her face on the left side is very painful with shocks then numbness. Worries me she could have Trigeminal Neuralgia.

The only thing to come of ER trips is the Dr saying get her to a NL asap, we can not properly care for her.

She has had her first appointment with a NL of my choice. So glad he was taking new patients. He has ordered MRI's to check for CM however, he did make a Dx of TN... She is now just 1 week on taking medication and her daily pain has dropped but not gone. Even just the cold air flares up her face.

It is a whole different set of worries when it's one of our children. I have started her on the right path of getting the proper help.....I hope! The NL did a whole set of blood work including Vitamin D, Vitamin B12 and her Thyroid. I should be able to get these results today. Started gathering all her records for a file. We will take it one day at a time!

Now I have to come to terms with my biggest fears, that she too has CM and the challenge of caring for her! I am putting my faith in God to help us all through this. Faith he will give me the strength to support and care for her while continuing my own recovery.

A new year.......Working on my goals

Well I started out the New Year with a list of things I want to change....mostly a new family doctor. Which by the way is no easy task. For the medical field is all about BUSINESS.....and patient comes in second! So sad.

I had my 3 month check up with the wonderful Dr Heilman. I am healing wonderful and remain Head Ache free. I do have lingering nerve pain in my scalp on the right side. So I have decided to go back on Gabapentin in a low dose. Ya this has helped where as before surgery it only increased pressure in my head, weird but I like the relief from the feeling my hair is being pulled out one strand at a time. Dr. Heilman requested me to stick with Dr. Mullins @ St Vincents as my NL. Not to use Umass. This is because he has a working relationship with Dr. Mullins and they can communicate about my progress. I am OK with this! I go for a check up on the 28th. He also supports a new PCP.

I did finally find a new PCP, went for an interview and really liked him. He wants to help me find the cause for so many Autoimmune issues and the now solid Lymph Node by my ear. Yesterday I made the switch....with my insurance.....have my first real appointment with the new dr for the 15th of January. I would like to get these things done by spring so I can get to gardening! The part I am worried about is transferring medical records, for this is up to me...I don't want to call but I guess I will have to.

It can at times feel like a full time job just to keep your health in order when you have disorders and or diseases. I really don't think it's suppose to be this way. This is what I am hoping a new PCP will address.......just tell me what I have and fix it! I want my energy back! I don't want to look 42 but feel 72.

My oldest son is going to his new dr today.....He called to tell me that he was having his Thyroid and Vitamin D checked for me! Really it's for HIM....But I am glad he is doing this. My mother also went and had her blood work done for the B and D. Her bone scan came back with Osteopenia which is pre Osteoporosis......I will bet her D level is low too.

So my mind wants to know if.......medical research has proven that more then 75% of all people in Ma could be Vitamin D deficient and that in New England we have high counts of Lyme Deer Ticks.........WHY on earth are these not just tested for when we go for an annual check up! I mean really! Would they much rather us on anti-depressants? I can almost understand not testing for Lymes but the D I can not.

Seems like the medical field has lost touch with US. It's "can I have your insurance card please". I wished they would just look at us and our charts and treat....I mean TREAT us as if we were their patient, not just a few letters and then a few numbers on a manila folder that gets shoved into an over stuffed wall of other numbers and letters..... Wouldn't it be a surprise if they asked how is your family!!

My goals for the first quarter of 2009: Start a Chiari Support group in Ma., sharing experiences with others locally. Spread Vitamin D awareness and have my whole family tested. Start a new relationship that is effective for my husband and I with a new family doctor.