Tuesday, January 5, 2010

January 2010 and goals are set

I have booked my T Time @ my favorite course. Just leave it to me to book the wrong side though.....My date is May 9th, Mothers Day with my 2 sons and hubby! So to prepare I have joined Planet Fitness and today was my first real workout EVER.

Did 30 minutes on the tread mill, 20 minutes on the bike and 10 minutes with stretching machines. Working the core body parts. Plan is to go 4 days per week. Not looking to get skinny or build muscle, I want to enhance my ability to function 7 days per week with less down time...less time in bed. I am sure my heart is way out of shape. I may fail, who knows. I will never know IF I don't try and then I can say I put a 110% effort into it!

So I guess that would be goal # 2.....endurance, # 1 golf a good game.

As far as my mental therapy, this is going well. I have poured myself into my kitchen, creating things....making homemade breads, butter.....different meals. This is helping me with my concentration, reading ingredients and remembering. Taking the time to finish with out being frustrated because I have to read and re-read before it sticks. I have had to read out load to make it work.

I go to Dr doubeni Friday.....while he was on vacation I had to call in about my sinuses, wow they were getting bad or at least my hunch told me that is what was going on with pressure. Got 10 days of antibiotics, also went to my eye Dr to make sure my eyes were OK. He agreed it's in the sinuses. I do however have severe dry eyes and the drops help with the burning. I was pressure free for about 5 days on the med's.....gonna make this # 3 of the New Year to get this under control.

I don't plan on over loading myself with goals.....way to hard to complete everything all in 1 year. I did good last year, have come a long long way. I have dates set for events and places to go.....So I am gonna hold off on making any further goals till the end of February, see how I am doing. Set a date to re look at my date book, see how much I can push myself safely.

Last year or maybe it was even 2008, I had sent a letter to all my family including In Laws. A request to get close again, say my I'm sorrys and ask for forgiveness for NOT being part of anything for 3 years. It has improved my relationships with nearly everyone! Sad that it never took hold with my only sibling, my younger brother...

This was my last difficult Christmas with my feelings and emotions about my brother. I have now finally after so so many years finally closing that chapter. For it is not I that has wronged nor is it I who won't make time or even want time. My brother is prejudice and judgemental towards me and my family. For reasons that are so ignorant....money, my address, my failures. It has taken me many years to fully know just why he has looked down on my life, I prayed to know why.....I found out and it is bitter sweet knowing the truth when you want to know the truth no matter what it is. Don't ever wish or seek to know truths unless you are fully prepared.

The wonderful thing is I forgive him. By forgiving it doesn't mean I have to forget and I am sure in time I will forget. In seeking the truth it has made my relationship closer with my Mother. For she knows....casts no judgement on me. So I guess you could say this would be # 4, inner peace about my life:

The valleys I have looked up from, climbed from. The mountain tops I have reached and looked down from. All the things I have tried, the lessons I have learned from adventures not gone as dreamed. Yes peace for getting out of bed everyday and making an effort how ever right or wrong it may have been or will be....to keep trying. Peace is a powerful word and a powerful thing to posses. I will hold onto this inner peace as my # 4 goal till it becomes so natural I no longer have to have it as a goal.

Tuesday, December 15, 2009

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!

Tuesday, September 29, 2009

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!

Tuesday, April 21, 2009

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!

Sunday, March 29, 2009

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!