Why is it so hard?

This week seems to be flying by, but this week is not my stressful week. Next week is the one I am not ready for.

For some reason, despite how much I want to be positive, there is an air of doubt in my mind that I just can't get rid of.

I am not sure if its fear of the unknown, the known, or just plain the fact that I am not comfortable with whatever may come next in the journey at this point.

I know I know, I have read all the positive scriptures that say not to fear, but there is just something that is NOT sitting well with me and I have a very Good/Bad history of that gut feeling being right.

Maybe it has something to do with having less than 4 weeks of pain free time in the last 24 months, I don't know. I was actually kind of relieved for the final diagnosis of being glucose intolerant; I have known it for some time, and now. However, I am not looking forward to the echo (why is an ultrasound so traumatic, it's such a simple test compared to say the MRI, lol, yes, it's my heart, but STILL, its non-invasive, and she isn't really all that concerned or at least she said she was just verifying that it was ok 2 years later, Perhaps its cause she is looking for Pressures that lead to the Lungs, which is to check for Pulmonary Hypertension (and my Blood Pressure is ALWAYS High at her appointments, last time it was the lowest ever at 155/85 and she ordered it directly after checking lung capacity which I didn't do so hot at) I just don't know

Then Friday I see the New Neurosurgeon…I DO NOT WANT A SHUNT… DO NOT, you read this, I DO NOT WANT ANOTHER SHUNT am I yelling and screaming like a child? Yes? No? I don't care…at this point I seriously feel the other docs are likely right, I have read the support boards pretty thoroughly, and guess what, NONE of them has had a shunt work longer than a year either. Hmmmm the only success stories, well they haven't had them a year, most are having issues within the first SIX months…I do not want to be in and out of the hospital again and again. Living with the pain is bad enough, but being sliced into every time it fails….I think I would rather suffer… Lauren has already told me she is scared of me having another surgery… and how bad it was when I came home in worse shape than going in, so unless he is willing to look at the Chiari, I am not sure what I am going to do come Friday. I thought I had a grip on what I felt was a right decision, but the more I pray, the worse I feel, and the worse I feel the less confident I feel about this decision, and the less confident I feel the harder it becomes, the harder it becomes, the more I am upset that I am going by myself because I know the decision is totally mine. At least I know I am not scheduling it til May. I can't do it before the end of the semester, since HF doesn't have online capabilities for me to do school while there.

Ugh.

It’s MY Blog and I’ll whine if I want to

Ok I won't whine for long, I just need to get it off my shoulders and since removing my head isn't an option, and I can't really talk to anyone, it comes out here.

Today has been Very HARD. I have been fighting all day the urge to go to the ER. Everytime I feel a burst of pain that I can't breathe through (mom's think labor contractions during transition) I look at my calendar, today is February 20, 2010 I see the Neurosurgeon On March 5^th, that is 13 days away, I just need to make it 13 more days…

This afternoon I told Chris I needed a Vicodin to take the edge off, and he was concerned about me overdosing, I giggled, for one, I could not take that many, a dose or two to help me through THIS patch is all I would take (last time I had a bottle of 40 it lasted me 6 months) but, the hardest part is he knows that it is not strong enough to do anything besides take the edge off. The reason I am getting to the ER point though is I need the drug cocktail, Morphine (pain) Toradol (Muscle relaxant) and Compazine or Zofran (my preferred anti nausea) just to feel a little better…and unfortunately, even that would take a few rounds just to break the cycle and bring a way over 20+ pain number down to something reasonable. Like a 10, lol…

Oh and lets not forget the hospital would do a spinal tap to bring my pressures down too (not that that helps, it usually makes me feel better for an hour or so then I feel worse for about 2-6 weeks thanks to my brain herniation….thats why my goal is to wait.

I go in in 10 days for the echo, woo hoo. Not looking forward to that either. At least that's not going to make my headache worse.

Can I honestly say I don’t know what to Title this?

It's not that I am at a loss for words, it's more that there are so many spinning around I can't sort them all out.

When I wrote last week it was one of the roughest weeks I had had in a while, I usually keep those times private, not because I do not want to share them, but because I don't feel most people truly understand what it's like to live with not one, not two, but three or four chronic conditions that are all blamed on my weight. When I talk to other people in my family though, I just do not feel it's all weight related, yes, if I lost the weight, I would feel better, but fact in hand, and medical proof exists, these problems are related to my central nervous system NOT my weight, Oh how I miss the one doctor who REALLY understood that reality, This is the one time I really wish I lived in Canada (yes, I know Canadian Health care isn't all that great either, but the Doc who saved my eyesight and understood that my problems went much deeper than losing the weight (he also recognized that the PTC causes weight gain not weight gain causing PTC, A whole other rant, not for today) is located in Toronto

In two weeks I see the new Neurosurgeon; I can only pray he is familiar with Chiari and the deeper issues within my brain so that I can get to the bottom of the whole mess. Since my last post, I have had numerous close calls with falls, Chris is a wreck, he helps me a lot now because he is extremely concerned, my balance is horrible but I am too stubborn to use the cane around the house, I should be able to walk a few feet without it, at least indoors, I used to be able to and I hate the deterioration.

Today I slept A LOT, I fell asleep just after 11:30pm and slept til 10am, I woke a few times during the night, but that's normal, then we had brunch, which took EVERYTHING out of me, I looked over school for me, went over school with Lauren, and got her working, fell back asleep and slept til 4:45, so I think I was awake for maybe 7 hours total during the day and they were not consecutive. Right now I am glad Chris is home. This is the first day I have gotten to nap, but apparently I needed it more than I thought.

In all honesty, tomorrow I have to make a few calls, and I am truly terrified to make one of the appointments, my Pulmonologist wants a 2D echo, I have not had much luck with tests lately and I don't think I can handle finding any more problems. My head is starting to hurt, I keep laughing at my appointment with my neuro asking if I was feeling depressed, I so wanted to ask him how he would feel if they kept finding more problems with him every single appointment instead of finding the solutions once in a while.

 

I would love to lose the weight, have been working on it for years, Lost several pounds recently, not enough to make any of my docs happy though. However, my mom, grandma, and all of my aunts are all morbidly obese as well (lets get real here, I come from a family of fat females) Mom and many of my aunts have obesity related health issues, High Blood Pressure, Diabetes, Stroke, Heart Disease, High Cholesterol, you name it. None of them have PTC, Sleep Apnea, Chiari, or any other neurological condition.

Up until THIS last Glucose Tolerance Test, I have NEVER had a high reading in the abnormal range, and I have suspected insulin resistance for years, (I have lots of symptoms of insulin resistance (and none except my mom do) my blood pressure is normal at all but one doctors office, my cholesterol has NEVER been high, I have had PTC symptoms since 1989 (when I weighed a mere 125lbs, which is less than what they expect me to get down to if I were to have bariatric surgery, so I don't expect improvement, since my symptoms started when I weighed less than they ever expect me to weigh) I had a heart attack by an Overdose of A Pain Medicine In a regulated HOSPITAL setting, Had I not been on that medication (which wasn't helping anyhow) my heart would be fine today and I wouldn't be at risk there, my sleep apnea is caused by the PTC and Chiari (since the Chiari is compressing the BRAIN STEM, which houses the Respiratory center, heart rate, and OH Yeah, THE BALANCE center, which explains the constant falls. ) Hmmm, I am a bit frustrated. If this neurosurgeon is not willing to LISTEN, I am calling one in Detroit, I have a recommendation from a girl on a support board, I plan on meeting in person, she lives close to where I used to live before I moved to the country, But we will visit Downtown to the Henry Ford Hospital SOMEWHERE in Detroit (I have NEVER been there) and meet with her doc if this one doesn't listen, I am so desperate for answers and to be normal again, although my hope is more for some semblance of stopping the damage that is happening…right now I know some of it is permanent, I want to keep it from becoming totally permanent and winding up totally paralyzed because this is "elective"

 

My daughter deserves a mom who can walk outside in the grass and play with her, not someone who can't be touched because she is in constant excruciating pain and enduring just because she feels it's what's best.

Stop the Ride I want to get off NOW!!!

I am totally exhausted; 5:45am came mighty early today. I woke up and got ready to head out to Henry Ford for my MRI, it seemed really weird having one without contrast, but I was NOT complaining, I hate those things. I am not sure, but I have a gut feeling unless this doc is really good at looking at the old and new stuff, he is going to want them repeated anyhow. Since Dr. Turner ordered it without the contrast, even the tech seemed kind of shocked, after all brain MRI's always use contrast…but since it was a neuro who ordered it she didn't question it.

 

Well, I was hovering around an 8-9 for my pain level, very low for me, I actually could say I felt good, by the time I left, I had spiked, and now I would say I am more like a 12-15, my eyes hurt my neck is stiff and my back is very sore.

Last night my neurologist called, he wanted me to pick up lab results, I am glucose intolerant, my only normal result was a fasting blood sugar, and it was 105 it was supposed to be between 65-105, so I barely made the cut. My half hour draw was 181, it was supposed to be between 110-170, 1 hour was 186, supposed to be between 120-170, and 2 hours was 159 supposed to be between 70 and 120 My vitamin D is low too, but the reference and stuff on the report is not as clear to me for reading it.

I am just exhausted I felt a little overwhelmed, I was not prepared for those results, I have previously had one result off lots of times but this is the first time I have had all 3 off. The endocrinologist had already prescribed metformin, so hopefully between that and diet we can keep this from becoming full blown type 2 diabetes like mom has.

February has been a whirlwind of change and it’s only been here a little over a week

Oh my goodness where to start?

I saw my neuro Feb3rd, He is sending me to a Neurosurgeon March 5^th, I have an MRI on Friday for that appointment, he also changed my meds, added Amitriptyline to my list to help me sleep through the pain that's been waking me at night, and ordered some blood work, thought I had Diabetic Neuropathy.

I saw my Pulmonologist February 5^th She is sending me for a 2D Echo (yet to be scheduled), She did a Chest X-Ray and Adjusted my CPAP down to a 14 from a 16.

On February 8^th I met the Endocrinologist, Uhm, that was an interesting appointment, she did an A1C that came out normal, actually a little below normal, However she gave me instructions on HOW to lose weight, and MY family is Rebelling.

There is NO MORE going out to eat, Uh, I figured the person to struggle with that most would be Lauren, but no, it's Chris. I figured I would struggle most with the NO RED MEAT, But no, that's Chris, I figured the NO juice, would Be ME, but no That's Lauren, I like Juice (its replaced Pop for me since carbonation makes me sick.

So what Can I have, Veggies, Fruits, White meats, (Fish, Chicken, Turkey), Oils (in Moderation, which means VERY LITTLE) No solid fats) Lemonade made with 2teaspoons of sugar per 8oz glass (that equals about a quarter cup of sugar per half gallon, I use about ¾ cup lemon juice to that same half gallon)

It is VERY challenging for me, but I think my family is struggling much more, because they don't like change, but I am hoping the benefits to them are great too, in just two days, I have lost another 3lbs. (I have about way more to go, let's get that Wii Workout burning)

So after some very express hurt feelings this morning, Chris is upset with me for actually listening and not going out, and offering him suggestions (he got mad at me for not being willing to go out anyhow) I told him he could fend for himself and I would cook for myself today. I am not going to kill myself for them, and if he wants to kill him and Lauren (who refuses to eat healthy too right now, so beit. They WILL come around.) Especially when his unemployment runs out and there is NO money to go out on. I will not be a part of him throwing the money out on a regular basis ANYMORE.

I am drained

Literally, I had my blood work run this Thursday morning. I arrived at the lab bright and early got registered, then came the challenges, Dr. Turner ordered a TSH, Glucose Tolerance Test and SED rate along with B-12 and Vitamin D levels…Ok, I am on Medicare with the disability, it's the only insurance I have at this time, so insurance is all HOOPS. Thanks to the hospital I am going through for MOST of my care, they are willing to jump through those hoops for me, since the first 3 tests were not covered with the original diagnosis code, they called the office and went through a list of code until we got one that worked. It was too funny, but they were more than willing to go the extra mile so I was not stuck with a HUGE bill, all but one of the tests is covered IN FULL.

And after FOUR blood draws out of the same vein, miracle of all miracles, 12 hours later I still do not have a bruise, if only nurses could get an IV in that way, lol.

For the first time having the Glucose Tolerance test I had the Lemon Lime instead of the usual Orange or Grape, I am so glad I did, I am not a pop drinker anymore, and I think the orange would have made me sick. I will have results sometime between next week and April 2^nd depending on what the results are.

I had a couple slightly better days but my normal is back, I am so glad my doc looks at the whole picture and says that a good day once in a while is not an improvement. I am so glad he understands how this works, he was proud of the weight loss too despite how it's coming off. We would rather see weight loss based off of changes that did not involve me being too sick to function 4 or more days per week.

An Interesting Day

I am Guilty.

Ok, I was reminded I haven't posted here but once this year, it's been for a number of reasons, some I will share some I will wait til I have more answers, and right now I just have more questions.

Today I saw my wonderful neurologist Dr. Turner, a God given gift; I was perfectly prepared for most of what he had to say today so this appointment was not a shock. He referred me to a neurosurgeon for a new shunt, we will see where that goes…At this time I do not feel God giving me peace about getting another shunt, but perhaps this is the doctor who will be able to fix the Chiari, if not, perhaps upon meeting him God will speak about the shunt, one way or the other disability requires me to be compliant with seeing my docs and I am going to do that. I am a little apprehensive about this appointment but not nearly as much as I thought I would be. I had to call my neurologist back and get an order for an mri first because they will just require one anyhow, mine are all old and outdated they are about 2 years old and he would order them repeated so they suggested I get them repeated before I see him in March.

Also, I had been falling a lot, balance has been an issue for a while, but about a year ago I noticed my hands and arms going numb as well as my legs, so I asked about this issue too, Dr. Turner thinks this may be due to Diabetic Neuropathy, I was a little taken aback, my last Glucose Tolerance Test was within normal range, as a matter of fact ALL of my Glucose Tolerance Tests except the first one hour when I was pregnant with Lauren have been just within normal range (but barely, hence the reason for Monday's appointment with the Endocrinologist about my weight) Anyhow, that being said he is running a 2 hour in the morning along with some other blood work, if those come back normal I get another EMG Yippee, I do not like those, they are very unpleasant.

It's been a little over 2 years since my shunt came out, (February 1^st) and in the past two years I have seen lots of changes. I have grown in lots of ways, I am learning how to open up to people and share how things are going in real life a little more, I have a few people I can talk to about what is happening with my health. I have a few really good friends that I have learned to confide in both here and online.

I have discovered that despite all I am going through most days I can still do a lot of my favorite things. I am in school still, it's VERY hard on my body, and what used to come so easily, takes much more effort to get done. But I refuse to become a statistic. PTC is not curable at this time, it goes into and out of remission, treatments work for a while, but they do not offer guaranties and they are basically only there to save eyesight not to help with the constant chronic pain.

I have an excellent support system in my husband and daughter, I have friends that I know I can count on if I need them, I have family that I can ask if I have more planning time as they are further away.

Most of all I have someone I am praying for that is going through an almost identical PTC battle and really needs support too, it helps me to pray for her needs as her shunt has potentially failed again, and she may need it replaced, She had her last shunt replaced a few days before my failed revision surgery that led to all of my complications, paralysis, and all that fun stuff, we were approved for disability within weeks of each other and while I have been diagnosed much longer, I was blessed with a working shunt or a remission (or a super high pain tolerance, any way you look at it, God let me not suffer too bad for a nice LONG time in the middle while Lauren needed her Mommy the most, I got to get pregnant and all the way til she turned 3 before I started getting sick again) So the last two years we have been mirroring each other in pain cycles. I keep praying and reading what she is doing and Thank God for the day her friend and someone I had been praying for more than 2 years before that (her daughter has a rare disease too, Christians are not exempt from hardship, my prayer list is long) perhaps one day when I go visit a friend of mine in Ohio we will go to the Columbus Zoo and I will make an effort and meet these two wonderful prayer warriors.

Jeremiah 29:11