Long time no Blog…Merry Christmas

Well its been a while since I wrote last but its not cause things started going well. I wish that was the case.

I have been BUSY.

We got a lot of school done with Lauren and were making progress, so you would figure I would have to have something go wrong.

We had some financial things happen, our unemployment ended in November, but I didn't tell anyone except a really good facebook friend when exactly it was ending, I have barely been to church since smells and noise are making me really sick, so I really don't know other than I prayed for God to provide, and Church called and offered some gift cards to a local store to help with some of the cash needs.

Then as my Ankle was healing I thought I was losing it, my stomach started getting really really sick, I wasn't sure what it was, last week, December 16, 2010, I woke up very ill, my head had been increasing exponentially, my ankle hurt really bad, (I know a break can cause nausea to be really bad) and my stomach was in Really bad pain, so I was totally lost, I ended up going to see my doctor, when I couldn't keep even water down. She wanted me admitted, So she gave me a shot for pain and a shot for nausea, and sent me to the hospital in the morning, I went to the ER Friday morning, I really wish I hadn't waited though…the ER doc didn't believe I was as sick as I was, and I spent THREE days in the Observation unit.

I had an Abdominal CT scan, slightly abnormal (showed something with my gall bladder) Had an abdominal Ultrasound, no gall stones, but it showed a polyp in my gall bladder, then they sent me to the Observation unit for the night NPO til I saw the GI specialist… I also saw the on call neuro, whom I am ignoring until I see Dr. Rossi on January 6^th since she made NO sense whatsoever. The GI's PA came in immediately after the neuro left, I don't remember her name, but she examined me, asked a lot and I mean A LOT of questions, and pushed all over my abdomen, my belly wasn't happy to begin with, and her pushing on it really really hurt. It was the first time we realized that the pain wasn't really as localized as I originally thought, which was both a good thing and a bad thing. The ER doc didn't even notice that it was further because he didn't really check around. (My doc was very upset about the ER's care, she said if I had been discharged within 24-48 hours, she wouldn't have been so upset, but 3 days I should have been on a floor)

Well she called Dr. Wille, the Gastroenterologist on call, and he wanted to do an EGD, or Upper Endoscopy, I don't remember anything beyond the prep, and him telling me he found gastritis, and that he would talk to me in the morning…he then had me try a liquid diet to eat again.

When I saw Dr. Wille Sunday morning, he was still concerned about the intense pain, it was coming and going, not constant but intense on and off, especially after meals, VERY Hot, Very cold, I paid dearly for my first taste of real food, a popsicle (but my dry mouth didn't care) room temp was the best but still coming back, so I am on Reglan before meals, Zofran and Phenegran alternating as needed for other nausea…Prilocec before meals, and I have been taken off my lasix, Dr. Dobrin put me back on 20mg since I had upped it to 80 and they pulled me off completely.

He ordered a HIDA scan on Sunday, I was told it was normal in the hospital, by the nurses, but Dr. Dobrin said it showed Biliary Dyskinesia, and the labs showed something else, I have to talk to Dr. Wille about both Dec 29^th as he will be the one primarily treating both. She was happy I liked him because she thought the follow up with him was very important. He had already left for the day by the time I got back from the HIDA scan, it was almost 6pm.

I came home on Monday, still not eating still feeling great but feeling much better than Thursday. When I started eating real food again, I started having trouble again, I felt so discouraged, but we will keep learning how to do things.

This new problem was not part of my plan, I am used to my head pain, but the belly pain was way more than I was able to deal with, and not being able to keep things down made my head worse, on top of everything else, NOW…I have my wonderful toradol staring at me and I cant take anything for my pain because it will aggravate my stomach which we have NO idea what caused it to be inflamed and swollen Gastritis wasn't my plan. Biliary Dyskinesia, wasn't my plan, and the blood results, were DEFINITELY not part of my plan, but God has a bigger plan, and even though right now, I can NOT see it, he is still in control of this mess.

 

My Brain is causing me issues, If it worked right, I would not NEED to be writing this blog today

This is getting ridiculous. I wasn't bothered by IH affecting JUST my life, but what seeing it interrupt so many right now is getting old.

I know I have neglected my blog this month, it has been a LONG rough month.

I don't even recall the last entry, sad as that may sound, I do know I saw my Neuro, we upped my Lasix to 60 then 80mgs a day, and changed my anti nauseas to Phenegran the pharmacy and I had a good go round I just got those today almost 3 weeks later THEN, lol, I saw my Gyn, we discussed the Therachoice Endometrial Ablation to stop my obnoxious messed up menstrual cycles.

Then I had a mini black out the drop attacks I have at home all the time IN HER OFFICE That was kinda scary, I thought, yes I said THOUGHT, I sprained my ankle, LOL, The emphasis being on the word thought. Today I had my follow up for my plantar faciitis with my podiatrist I happened to mention the ankle twist to him, Hmmm, he checked it, thinking I was right it was just a sprain but x-rayed to be sure, we were both kinda stunned to learn I chipped the fibula and now am an a stupid CAM boot for 6-8 weeks for it to heal, which means, HAHA, I can't wear it to drive, so I am changing it a zillion times in and out, if I am going to be ON it.

My Brain is such a pain in the butt, If it worked I wouldn't have blacked out for that third of a second and lost my balance to twist and break my ankle to need all this.

He said and I thought he was over reacting…it will make your left leg hurt more, your back and neck hurt too, and you may notice pain in other places because of where the break is, and wearing the boot will hinder your balance even more…I was thinking, he is exaggerating so if it bugs me a little, I wouldn't be surprised.

Making dinner, I literally came to the couch and cried for 30 minutes, the pain wearing the boot was unbearable, I think I would rather deal with the break and walking on it barefoot, or the pain of reinjuring it over and over again, seeing how it didn't hurt for a few hours after. My back had been bothering me, but the boot made the back, neck, head and left leg literally unbearable.

Happy Thanksgiving

Thanksgiving dinner had some alterations to my usual this year. I only cooked a Turkey breast since I can no longer lift a whole turkey. This will actually be good in more ways than one since it means we won't be throwing out a lot of dark meat that no one likes.

We decided not to go to my in-laws after some, let's call them issues, in September. I didn't want to deal with the hassle and well, no offense, but I have always had Thanksgiving at my house and they did it on Friday til this year, I wasn't giving up my tradition cause they wanted a change. I am SO glad I didn't back down this year. I was so sick yesterday and today I didn't feel well most of the day, so being around people and smells would have not gone over well, my family is one thing, they are so used to me being sick, but others, well they don't get it despite saying how much they understand it.

I also made REAL mashed potatoes, Sweet Potato Casserole, Garlic Green Beans, Dressing, and Cranberry Relish. We forgot the rolls, oops, I guess they will be buns for something.

My pain levels have been fairly steady, I am dealing with a lot of insomnia, my CPAP was upped to 15, not much change, but I am still not sleeping much.

My neurologist changed my Lasix at this appointment, we upped it to 40mg in the morning and 20mg at night, keeping all my other meds the same. I have to call her if I up it to 40 am and PM but I am not to do that for at least 2-3 weeks. She also changed my anti-emetic to Phenergan to see if that helps better than the zofran did (it wasn't working very well, the 8mg worked a little better but, not great)

As for the Victoza, I am now on the 1.8mg the injections hurt a bit more, and they make me shaky for a few minutes, but, no other side effects except continued weight loss. It's a SLOW process though, but it came on slowly too, so I am ok with that. The support board said the average was 10lbs in 2 months, so being down over 7lbs in less than 3 weeks I am happy. My appetite has gone down and I am learning to control portions better (today is a little bit different though)

I have counted my blessings over on Facebook, I am so grateful for my friends there, IH and Chiari have been a very big challenge for me, and not going through it alone has made my life so much easier.

An interesting Week…started again

Well, I survived the first week of Physical Therapy, I have to admit Traction REALLY helped A LOT, I was surprised.

When I finished Thursday, I came home feeling pretty positive and encouraged, I felt like I could rule the world. Then Friday happened. I went to see Dr. Kachan, he went over my EMG results, I was a fully prepared for those results, I knew they were normal, or so I thought…The Tarsal Tunnel was normal…but there was NO response at the knee, I have to discuss this with Dr. Rossi since Dr. Young did the EMG I do not understand why I had No response at the knee. She didn't check beyond the foot and ankle for the tibial nerve, so I was not aware of the knee's lack of response. Dr. Kachan ended up doing a corticosteroid shot for Plantar Fasciitis in my heel, I thought I was going to DIE, I have had the steroid shots in my wrist, ankle, and my knee before, but this one was definitely the most painful I have EVER experienced…and unlike the others, it did not get better within hours like the others, this one took ALL day Friday and most of Saturday. I was off of my feet until late Saturday because it hurt so bad, it did give me the ability to wiggle my toes though so it did improve it. Although the relief didn't last long.

I also started the Victoza last week, I took the week of the 0.6mg, then I moved up on Monday to the 1.2mg, I noticed today that I could not finish a burger, I was VERY full and I haven't even taken it yet today. In the first 4 doses I lost 6lbs. I will be weighed again on the 30^th, I wonder what the results will be…The nausea isn't as bad as reviewers seem to say. Probably cause I am used to it from my other meds.

We are looking for a new place to live, Unemployment is officially over, Trusting God to provide for our needs, its not an easy task by any means, my disability is NOT enough to cover our bills. I am still very sick regularly, I get a few good days every now and again, but not enough where I could go back to work, today I noticed how bad my eyes are, and I have to admit, it seriously depressed me. I did see the opthamologist last week too, Dr. Simone shared that the reason I don't have papilledema anymore is because my eyes are atrophied so they can not swell, I almost cried, my vision is becoming PERMANENTLY damaged. Its not fair…and I don't do well with that.

Its affecting Lauren, Chris, and even my cats.

Yesterday after physical therapy, I felt good for about an hour, then I hurt ridiculously bad, I don't think it had anything to do with therapy though, I think it was just a bad pain day…because I felt great AT therapy…except my body didn't like leaving…its so weird.

Tomorrow I have an ultrasound and Thursday is another Therapy day…Then some day this week I should be hearing from Beaumont Home Medical to get my machine reset. I wonder what to, my sleep study last week yielded a reset, but I don't know what to.

And We start Anew

Today was busy, Tomorrow will be BUSIER, Wednesday I will sleep ALL DAY, lol, and Thursday I will be TIRED, Friday will be calm after my doctor's appointment.

A glimpse into my week?

Nah, you don't really want that lol.

Ok, well today I started Physical therapy, my poor Physical therapist looked at my script and said BUT there are SIX body parts listed here…uhm yeah….I have a lot going on…we are starting with the neck and working our way down, kinda hoping the neck will fix some of the lower ones by itself.

She agreed.

We started with just heat today, and a list of exercises to do at home, we will probably do traction and massage J I am A wee bit excited about that it felt so good when she found some muscles that HURT all the way down by back and a few that when she pulled on the traction felt GOOD all the way up.

Today also started the Victoza, I was seriously surprised the injection didn't hurt. I was totally prepared for it to hurt, but it didn't. I have 7 days on 0.6, then 7 days at 1.2 then I have to call the office, I will call them to verify this week to reverify his dose anyhow, but I will call AFTER I get the call from the doctors office tomorrow.

Today while I was in PT I got a call from my PCPs office to call and schedule a follow up (I have one set for February, so I am a bit confused, or to return her call, so I returned her call, I have NO clue what is going on, I was JUST there a couple weeks ago, and just in my endocrinologists Nov 2nd)

Needless to say I was a bit confused about this call. I had a hard time with my prescription transfer today too, so I have had a rough day.

Tomorrow I have Physical Therapy at 4:30pm, Sleep Study at 8:30pm Chris will have dinner ready when I get home, THANK you Crock POT. Lauren will do school in the MORNING but she will have all afternoon FREE

Wednesday, I am NAPPING…LOL, Lauren will do school in the afternoon, but she will have the morning free, totally opposite of our NORMAL schedule

Thursday, I have an Eye appointment at 8am, and Lauren will have school MID day, lol then I have Physical Therapy at 4:30…

Thank God for HOMESCHOOLING

Friday, I have an 8:45am Podiatry appointment and am CLEAR sailing for the rest of the day, Lauren is off school, if she has completed all of her weeks assignments. I love teaching through the summer for 4 day weeks and having the rare 5 day week…and so does she.

Saturday and Sunday…I am planning on having a GOOD weekend, and praying to feel well enough to get to church again it felt so nice to be there this past week…its been so long.

 

Well what do we have here?

Well lets see…yesterday I had my EMG, it was NORMAL, Can we say HAPPY? I can. It was an interesting day. I drove out to Rochester to the doctor's office, signed in, was asked which doctor, answer, Dr. Rossi, receptionist says, but you aren't seeing the doctor RIGHT? She isn't here today…Hmm, No she is PERFORMING the EMG… HA, Uhm, She isn't here..Uhm, Uhm…they look it up, I am scheduled with Dr. Young, who do you normally see…Dr. Rossi…I think I just said that…I am growing a cross between concerned, angry and frustrated. I just drove 45 minutes to get here, I have waited 6 weeks for this appointment. The other receptionist that I usually deal with says USUALLY we would have you reschedule but asks me if I mind if Dr. Young does it…I shrug my shoulders, I have seen them both, I met them both in the hospital, I have actually seen MORE of Dr. Young than Dr. Rossi, since I Spent 4 days in the Hospital, and I saw Dr. Young Thursday AND Friday, and Dr. Rossi Just on Wednesday. Now I can officially say I have seen Dr. Young more, lol, again. Dr. Young didn't mind doing the EMG so long as I was ok with her doing it… She gave me the results (she wasn't supposed to…since she isn't my doc…but I AM NOT COMPLAINING)

THEY WERE NORMAL, I will shout it from the rooftops…Its not Tarsal Tunnel So my foot and ankle pain isn't due to Tibial nerve damage!!!!!

Today I was researching the Victoza…Its an interesting medicine. I haven't started it yet, I did get 10 days worth of 1500 calorie meal plans made up so I now know WHEN I am goin to take it, I will have to call the office when I get to the last of the 3 does, or if I have any questions on the med, I will be calling the office next week to find out exactly how long before he wants me to change doses because I don't see more directions in the box, and my memory isn't that great, I know there isn't enough to make it to the next appointment either…so I will definitely have to call and ask.

ARG…

Diabetes STINKS!!! I have been dealing with this since Last February, but today it hit me really hard. After seeing the endocringologst this morning I was expecting to get my meds cut, my sugars have been really good, I haven't had a high number in a long time, they have been staying in the low 100's but now he is concerned about my liver enzymes and is putting me on Victoza as well as doubling my Metformin dose, I was so not happy about the injectables… That was NOT what I had anticipated. God must have bigger plans.

Feeling Very Blessed

Today was my follow up with Dr. Dobrin I have seen her several times since August, but today was really pivotal in how I really felt about having a Primary Care doctor. Up until just before I won my disability, I hadn't had a primary doc, I had PPO insurance and enough specialists to make up for not having one, I had a specialist for just about everything one could imagine, and I really didn't need someone to coordinate my care, my brain worked well enough to organize it.

When I applied for disability I needed a primary doctor because I thought I was going to wind up on SSI not SSD, which would have given me Medicaid that was an HMO plan, not Medicare and Straight Medicaid, like I do have, so my previous PCP did next to nothing for me, and when I say next to nothing, I mean, he basically did what I asked him to or what my other doctors requested him to do, NOTHING proactive or that required HIM to make a medical decision affecting my care WHATSOEVER.

So when I got sick in August, we decided we were going to a different hospital. My Neurologist had given up, my pulmonologist had all but given up, and I was left to suffer alone. So off to Beaumont Chris and I went. We knew right away it was the right choice, the hospital staff took great care of me, didn't question me and wanted me to see THEIR docs, I got a neurology referral, and when my sugars went wacky I was referred to a new endocrinologist (who also wasn't doing her job). When I got out they wanted me to go see a primary care doc, I wasn't going back to my doc, he had already failed me, so my nurse whom I ever so lovingly cried on for over an hour the day before told me to call and how to get a new primary doc with them, I prayed, God knew I needed a doc that was MEANT for me…I have LOTS of doctors, I absolutely LOVED the Neurologist I was given, and when I called the referral service they asked my insurance and I told them what I had, asked where I wanted to go, There are NO Beaumont docs where I live, so I mentioned my Neurologist was on Rochester Road, That's ALL I said… So she gave me this LONG name, its Hyphenated, lol, of Dr. Dobrin (they don't use her WHOLE name, it doesn't fit on her card, lol) and I called and made the appointment, The first appointment took over 3 hours, she was so thorough, I wasn't sure I liked her then…she kinda scared me, it was extreme to extreme.

I saw her again, a few weeks later, she reran the blood work, and checked other things, same routine, but shorter appointment, still very thorough, a month later, same routine, shorter appointment, still NO WAIT, but very thorough, this is growing on me, office staff friendly, very efficient…Then Today…hmm, I have had 2 referral appointments and a follow up appointment since I saw her last…so we went over those, All in all, she spent an HOUR with me BEFORE deciding what to do with me.

We re-evaluated some chest/shoulder pain, she thinks it MIGHT be musculoskeletal, so we are going to attempt Physical therapy, We went over my bloodwork, she can't figure out what is up with my liver, she is calling it fatty liver disease, but she is going to assume its just its normal (its not, because it wasn't there in February, but eh whatever, my body has a way about creating new normals when it gets bored)

We discussed the bariatric surgery… she is not pushing me as hard since I was OPEN and Honest about my thoughts, long story short I am just NOT SURE, she said to call her when I am sure, IF I am sure. Then we talked about the Fibromyalgia, Pain, and Neuro stuff…she doesn't like how complicated I am, but is still not giving up on me…she says I need a miracle.

And A New Doc is Met…Hmm? Not sure what I think yet

Today I met Dr. Mardelli, the new Pulmonologist who will be dealing with my sleep apnea, I am not sure if he will be dealing with ALL of my issues or referring me to another pulmonologist or cardiologist or someone else yet or not, follow up will be determined AFTER my new sleep study on November 9^th. However he was VERY quiet, he Listened, A LOT, he didn't ask many questions, I am not sure if that's a good thing or a bad thing. I know I know a lot of what I am going through and am familiar with the processes, so it was rather strange for him to not ask hardly any questions at all.

He basically went over my meds, my CPAP info, where he got REALLY confused, I have a fixed machine that has been reset several times trying to find an IDEAL pressure setting after an initial titration, (my initial sleep study set me to 19, which the office overruled because it would have shocked my body who was not used to CPAP) I was started at a 12, with a ramp of 6, which I learned to forego really fast cause that was so easy to deal with, then I was bumped up to 17, then down to 7 then up to 19 now down to 14 cause 19 was literally blowing the mask off my face.

I am hoping either they find I need Oxygen so I can get some extra help with breathing so I am not hurting all the time, or he refers me to a cardiologist so we can find out why I am in pain and having this hard of a time ALL the time, I should not be out of breath walking to the bathroom… but we will see. Wait and See. There is always the possibility that they will refer to a regular pulmonologist for continued care as well…but I don't know, and him for the sleep follow ups, which I have NO clue how often they will have me follow up now, I have been followed every 3-6 months for the last 2 years, so this change could be HUGE…Here is hoping.

Tomorrow I am going in for Bloodwork, Its for my endocrinologist, I am having a lot drawn but it's all pretty basic, hoping that when it's done they will find that my kidneys are functioning fine, liver is back to normal (I think he is doing a different liver test) and we shall see where my cholesterol numbers are, they haven't been tested in Uhm, I don't even remember when.

Then I have to see Dr. Dobrin on Thursday Hoping she has nothing but positive for me.

It’s all connected, I always knew it…

I saw the podiatrist again on Friday, my life is so full of doctors I don't even know if I am coming or going half the time.

This week I have two appointments, then next week I start the list with a bunch more, November will be fun.

Anyhow, I was diagnosed with High Arches, Heel Spurs, and Probable Tarsal Tunnel about a month ago, not a huge deal, or so I thought. I already have Carpal Tunnel, so Tarsal Tunnel is just the Ankle version…except I get the privilege of actually getting an EMG to rule it out this time, yay…probably cause I have so many other things going on.

Well I was looking up "what high arches do" because he changed my arch support from last time to this time (last time I literally lost the shoes the MOMENT I walked in the house EVERY time I walked in) These ones aren't AS bad, but my back was KILLING me all day today since we had to go shopping, and my Headaches were a lot worse, I actually felt like if I could I would need a BODY transplant, my whole body hurts…now, I am not blaming this on the Arch supports, but it led me to want to know what my FEET had to do with all my pain…which was far worse than I am used to today. High Arches, the kind that are Abnormally high like mine, lol, are associated with, lol, of course more frequent injuries, that does explain the 20+ sprains, strains and TWO fractures in 22 years (mind you I didn't start spraining til I was 12, so I had to subtract the first 12 years) BUT, and here is the good part, High Arches are also associated with Neurological Problems…Hmm, I have Intracranial Hypertension (neurological) Chiari malformation (my brain doesn't fit in my head, DEFINITELY neurological) and Sleep Apnea, (pulmonary/neurological since part of it is because my brain forgets to BREATHE)

Hmm, I think I just may have some neurological problems. That about did me in, a health problem that wasn't really a problem, I have had all my life, is associated with neurological deficits.

Then after I got home and got all comfy, my gynecologist office calls, we are waiting on some decisions based on well Aunt Flo, since my endometrial biopsy wasn't conclusive, she offered a D&C with Hysteroscopy, ugg, I will have to wait and see based on IF, I have a period in October, or November, so far, October is a No show, the cramps came, but the visitor, she didn't.

Rollercoaster ride

What a day it has been…at least I got to see good news today, a good friend of mine with IH has been on Octreotide for the last 3 weeks in Texas, and is seeing progress, for the first time in 11 years her pressures are finally normal. God is Good ALL the time, Brooke is one of the biggest blessings I have had since I have been on Facebook and Intracranial Hypertension is how we met, I wouldn't trade IH for meeting this wonderful woman for anything, she has become one of my closest friends online. I have others, my "peapod" and a few other special friends I have met as well, but Brooke was the first one I became really close to and seeing her finally having success is just HUGE.

As for ME…well, This has been A week…I slept through last weekend, I honestly don't remember it, then I slept through most of Monday too, I got up for my nurse, but apparently she wasn't coming til Tuesday, oops. She came on Tuesday, then my pain was REALLY bad, so she called my neuro, but I still don't have pain meds so I don't know what's going on with that, not overly concerned though. Wednesday insomnia took over, I felt like crap and haven't improved. Friday I saw the dermatologist I was Really nervous going in, I had No clue what to expect. I have to admit I was scared out of my wits because I didn't want them looking for anything I didn't show willingly, I have a history of blistering sunburn, but I was more concerned about this scab that wont heal and this mole that kept bleeding (since I was there I figured I would take advantage of the appointment) I wasn't thrilled to be sent anyhow, he looked at the legs, figures since they are old, they will heal eventually, but because they keep getting irritated its taking forever. The ones on my breast though, he felt that's taking so long because they are getting rubbed so he prescribed a special antibiotic ointment called Bactroban and put some on it in the office, I checked it a few hours ago and they are already clearing up, that must be some pretty powerful stuff, lol. The mole, it was at my hairline and kept getting caught in the hairbrush, comb, and when I washed my hair, he took it cause it was JUST shy of where they would normally take a mole off anyhow and it kept bleeding. I was kind of nervous about that part, but to be quite honest, I think it hurts worst to take my sugar, I didn't feel the novacaine shot and I certainly didn't feel him sterilize it or remove it, but it was done too quickly to question it, probably 2 minutes tops.

If the skin isn't clear in 3 weeks I have to schedule a follow up, if the biopsy on the mole shows anything they will call, if not, I am all clear.

Then, I am good til the 22^nd when I see the Podiatrist again, 25^th when I see the New Pulmonologist, and 28^th when I see the Primary care, although somewhere in there I need to squeeze in lab work for the Endocrinologist that I see the first week in November.

My head is not playing nice many days, I am stressed out about the bariatric surgery, I have to schedule the Psych eval, I think I have to call Medicare and see what they suggest, because I really REALLY need to talk to someone about how I feel, I don't need to go into this without SERIOSLY talking to someone for a while about this.

Follow Ups are getting Hard When you get Referrals at almost every appointment

Today I will admit I went to my doctors' appointments a bit apprehensive…after my ultrasound at the beginning of September, I was already very nervous about what to expect when I saw Dr. Masters today, and I guess I had good reason to be. She is repeating the ultrasounds in two months, but my uterus was enlarged, we don't know why…she did a biopsy…or rather attempted to, we will know more at the next appointment if it will need to be repeated, if it does, it will be done in the hospital, under anesthesia, since this one was so hard to get. I pray she got enough to get answers…

If the uterus is still enlarged during the next ultrasound or the bleeding is still acting up, well…we will make a next step at the end of November, I see her again November 30^th, I have to schedule the ultrasound yet.

My blood Pressure was good at BOTH appointments for going through all the stress of the day, lol. 128/78 and 118/68 at the second appointment and they were in the same building and a little over an hour apart.

After I scheduled my follow up with Dr. Masters I scheduled my EMG with Dr. Rossi, that is November 5^th, woo hoo, so exciting, can I skip that one? PLEASE? Just had a funny thought that I could have my old neuro do it, lol, NOT gonna Happen though, and I won't stop liking Dr. Rossi cause she does it, so I don't really have to worry about it either.

Then I walked across the building to see Dr. Dobrin, what a hassle…my Medicaid is a pain in the dupa, because I didn't have a card when I came in the FIRST time, they didn't set it up right, well the lady who drew my blood put it in, but apparently my doctors office and the lab don't bill TOGETHER, so she has to resubmit everything from the FIRST appointment, which is a HUGE appointment cause they ran a gazillion and 50 tests, SO…anyhow…they had a cow about resubmitting it… that's why I am so proud of my lower blood pressure, I was getting really stressed out.

I FINALLY got back to see her, and my stress level went through the roof, but my blood pressure behaved and stayed down, She doesn't like my scabs not healing, my liver enzymes are still too high, and about the only thing that IS working is my sugar…I did mention my breathing issue and my CPAP issue, so she is sending me to a Dermatologist about the open scabs that just won't heal, apparently that's not a good thing, she said if my sugars were high, it would probably be because my diabetes is not well controlled, but my sugar averages 115-118 with the Metformin so obviously that's not the case. She asked about my Pulmonologist and said she doesn't like her, since it's been about 2 years since my last sleep study she wants it repeated and wants me to see a different pulmonologist, I think mine had given up on me cause CPAP wasn't working, but she said not to be surprised if the pulmonologist sends me to see someone else too…which I wont because Dr. Shanidze kept saying I should see a cardiologist for my breathing issue (which I thought a funny thing for a doctor who specializes in the lungs, but my lungs aren't the problem…

So anyhow, I have a call in to the Pulmonologist, I have to call the dermatologist in the morning, and I see Dr. Dobrin on October 28^th. So my October is no Oct 22, 28, and Nov is 2, 5, 11, 23, 30 with 3 to be determined

Sporadic posting at best…it has been a Hectic Month and very overwhelming

September has been almost as hectic as August was. I knew it wasn't going to be an easy month, so I was a bit prepared, but I don't think anything could have prepared me for the whirlwind that has turned my life upside down, I guess I had forgotten what it was like to have thorough doctors who actually cared about their patients.

I had moved my medical care from one hospital to another in our local area, we do not have a CLOSE hospital no matter what, the closest hospital that is a REAL hospital capable of handling my care is a good 45 minutes away in ANY direction, we have two that are not able to handle it that are closer, but as I said, they are not capable of handling it and I have to head either to Detroit, Southfield (NOT HAPPENING, they tried killing me, see posts from Early to middle 2008) or Troy…

I have been to Detroit, they keep having me see the same doctors who do the same nothingness and send me back to the same docs who do the same nothing…anyhow, it was an easy decision from there. What I wasn't prepared for is follow up care. I had seen a PCP, Neuro, and Gynecologist, who all sent me for tests, those tests some had to be repeated…the ophthalmologist sent me for tests (I was NOT happy about having that redone again, it was early but I did need another tap because my body responded very well)

I also saw a Podiatrist for the Diabetes…a routine exam, or so I thought…man was I wrong…to some degree anyhow. I had said all along I was PRETTY sure that my sugar was NOT causing my nerve pain, at least I now know I was right, in a way I am almost upset I was.

The new doc…I saw this morning, was once again a Beaumont doc, VERY thorough, and decided that the nerve pain was kind of important… ok I want to be out of pain all the time so I happen to agree there…the rest of the appointment kinda threw me though, he decided we would X-Ray to see that it wasn't anything Bony causing issues…HA, Leave it to me to have developed Bone Spurs, now, these had to have formed sometime in the last 9 years cause they were NOT there when I had my fractured foot and was there in 2001 before I got pregnant with Lauren (ya I went to the same foot place)

I also have High arches, OK, so why wasn't THIS a problem 9 years ago? During my pregnancy? Even up til oh…the last 2 ½ years? Ya he didn't have THOSE answers J

What did he do…well, this routine exam turned into almost an hour long ordeal, actually a little longer, He checked my circulation, he tested my nerves, the tuning fork thing, I so hate that cause it hurts on my left foot and ankle, he thinks I may have tarsal tunnel syndrome, the foots answer to carpal tunnel…then he did x-rays, explained THOSE findings, then did Ultrasound massage, NOT comfortable for painful feet and ankles, but didn't complain, just wanted to go home…was frustrated for being honest…Then he gave me inserts for my shoes which now my back and feet hurt more since my shoes now feel too small on top of everything…OH and I have a script to have an EMG and NCV of my foot and ankle to rule out Tarsal Tunnel, that my lovely neurologist gets to do…

I saw my Pulmonologist and I have lots of questions for my PCP since I feel my shortness of breath is something we need to worry about since my pulmonologist seems to care, but only when she isn't rushed…my left chest hurts all the time now…so we need to figure out what's next there too…my mask keeps starting and stopping…too much crap

With IH, Chiari, Sleep Apnea, and Nerve Damage, I really Need just one thing to NOT be complicated, praying that one thing comes with the results from my Gyn appointment on Tuesday, we are discussing permanent Birth control since I am still cramping and spotting but my period stopped a week ago, I also didn't have one last month at all, and they are super heavy when I do…Ugg…I had to have the ultrasounds for that repeated too, scared me to death…but everything happens for a reason…I just don't know WHAT that reason is.

Coming to terms—living with disabilities

This has been a hard year. I have known for a LONG time that I have had limitations, they didn't really get to me until they started getting to my family.

September is Awareness month for two of the most disabling conditions I suffer from, both Intracranial Hypertension (IH) and Chiari Malformation (ACM) have awareness month in September. Why they put themselves together many of us are wondering, possibly cause Many of the symptoms are very similar, we don't know. For whatever reason, they are both in September.

I know many people over the years have criticized me for not going up and praying for healing week after week, year after year, after all, I am a Christian who believes God can heal ANYONE of ANYTHING, IF
it's God's will. Needless to say, while I pray and hope one day they will find a workable cure or treatment for both of these debilitating diseases so we do not have to suffer, and others after me will not have to suffer. God has been using this disease in my life for over 21 years. I have seen his work, He has brought people IN my life, he has worked through my life, and he has definitely used EVERY surgery, hospitalization and doctors visit for his Glory. I do not feel as if it's a punishment, like I did at 12, 13, and 14 years old when it started. I remember feeling like Job. I remember grumbling and asking God "HOW MUCH MORE?"

A wonderful Mentor by way of my pastor's wife back then, gave me some wonderful words of wisdom, I held them through every trial from then on. Tena said to me, in a counseling session when I cried I wanted to know what I was doing wrong that God was punishing me, she said that it wasn't what I was doing wrong, but what I was doing right, in tears, and pain, I then stopped and asked what I was doing right because I still wanted to be out of pain and I would stop that then. She then explained that these tests were going to be part of my testimony for the rest of my life…I did not realize then, that they would last so long, or have such a profound impact on so many lives.

God has had a very detailed plan for EVERY life I have encountered, I do not know where or how they have all turned out, what I do know, is that I have never put an opportunity to share him through this to waste. Each new diagnosis I have had added, I have cried over. It was VERY hard to be put on a walker at 32, it was great to go to the cane, and devastating to go back to the walker.

I cried when my rehab doc said paralysis instead of radiculopathy, I freaked out a bit, It was hard to take. When they diagnosed me as borderline diabetic, I was almost ok with it, til this week when I learned there is no such thing as Borderline and its actually diabetes, pretty well controlled, but diabetes nonetheless. When I saw my new gynecologist for irregular bleeding, and an annual exam, pretty routine or so I thought, and she is sending me for ultrasounds and a mammogram and breast ultrasound cause she found a mass, I know God will use that too. Needless to say, I am a bit overwhelmed.

I have so many appointments my calendar looks like it has the chicken pox.

 

If you know someone with a rare disease or disability, take the time to let them know you care about them, and that you are concerned, don't act like they have the plague or treat them like they are a burden cause they are sick, they feel it enough from their own minds. We have enough on our plates emotionally, please remember to think about how you would feel if it was YOU who had that rare disease that only affected a few people.

Often when I go to the doctors office or hospital the nurses and sometimes even the doctors unless they are "my" doctors do not even know what the diseases I am talking about are. I was blessed the day I was diagnosed, a Physician Assistant had seen it in a text book in medical school and I fit the profile, I had already been symptomatic 9 years. The Chiari they found by a neurosurgeon who was a 2^nd opinion. He saw it after my shunt had come OUT, but he saw it in the CT scan before. Basically who knows how long it had been there.

Both diseases are extremely rare, and most people do not know what they are. A support group led me to facebook and a Multitude of friends who know my daily struggles. But those who really know me, I know very few who really know who I am and what I go through. There are three people at church who ask me how I REALLY feel when I say I am fine. One knows why because she has been there with the rare diseases… The other, she just Understands, God has blessed me with a few people to confide in when I need to talk.

For more information on my illnesses feel free to ask, or peruse these links,

www.ihrfoundation.org

http://www.conquerchiari.org/

It Pays to be Honest

After a rough day of shopping and not being able to complete my list, I got home to discover that the cashier had not rung up my New necessity, Lovely, I had two choices.

We do almost all of our shopping at the local Meijer store, I love their prices and get fantastic deals every time I go in, I used to work for Meijer before Lauren was born (and until she was a year old), so it seems appropriate that I continue to give them a lot of business, I know how the stores work and know what to expect when I shop…

The difference is I get my scripts at Kroger because before I had insurance, they had the $4 plan and I got used to taking care of that there.

My Endocrinology appointment this past Tuesday gifted me with a wonderful chore I am not sure if that is sarcastic or not, it is definitely something that should have been done all along, and I am truly blessed by these new docs.

He gave me a FreeStyle Freedom Lite, blood glucose monitor and officially changed my diagnosis from "pre-diabetes" to type 2 diabetes because my numbers were actually too high and my neuropathy and vision issues qualify me for the diagnosis L Anyhow, my WHOLE sugars are staying in check, but he is guessing its cause I have been on meds for 7 months already, which is PERFECTLY fine by me, they are NOT where he has already made it CLEAR he wants them all the time.

Anyhow how the point of my post, hehe, I had to FINISH my list at Meijer today, I was too tired and worn out yesterday, and when I got home I realized that they did not ring my test strips and lancets (which Medicare only pays for there and Rite Aid (which we will NOT give business to) but in my trying to figure them out, I did not realize they were also Expired, and for the WRONG machine, so I called the manufacturer to ask about it, I was looking all over for an expiration date (turns out the LOT Number IS the expiration date, so I will know for next time…and Abbott is sending me a New box, but, for being honest and PAYING for them at Meijer today anyhow, I got a $5 discount on the rest of my groceries, see it pays to be honest. I could have very easily decided that I didn't want to pay that $17 something or not looked over my receipt, it wouldn't have been hard to miss, I had almost two carts of groceries and other merchandise stocking up for the month. But I did, and I did notice, and we made it right, and you know what, it felt good.

We have a $100 purchase to be made elsewhere plus a new shower head to handicap my bathroom, and its emotional, but I feel knowing that I set a good example for my Lauren to see honesty in action will make an impact when she sees us struggle with this disability on a routine basis. God has been amazing, Right now we have Jobs to look at that for the first time in MONTHS we are finally seeing field jobs that are local, God has provided doctors that are willing to help me instead of being scared of me, and while, it's a work in progress, I am HAPPY with how its moving, my pain levels are all over the place, but I am HAPPY, God is SO good….

Romans 8:28 Literally

And we know that ALL things work together for good to them that Love God, to them who are the called according to his purpose.

This was the very first verse of scripture I memorized as a child, I was no more than 7 years old and probably closer to 6, little did I know the impact it was going to have on my life, some 28 year later.

This month is nearly over, just a few more days, and the whirlwind that was August will have passed. August has been kind of a blur to me. This year has been VERY rough, but August has been very special, I have always had a bit of fear about facing my health issues, ok, I know I have two rare diseases, I have one NOT so rare complication of the two and I have one NORMAL disease…my overall health up til 2008 was relatively stable, Ok, 2003 but I lived in denial for a LONG time, and I admitted it in 2007/2008, ANYHOW.

Last year, my spinal taps did not give me ANY relief, but I was not drained down lower than 16-18cm of pressure (for non IHers, think in terms of Blood Pressure except its spinal pressure, Normal ranges from 10-20, but my body out produces and the lower they drain the longer I have before I need another, not only that, but the longer my head gets good relief, but some get low pressure headaches, I have NEVER experienced Low pressure.)

 

On to this August, On the 10^th, I had to be taken to the ER due to not being able to handle the pan, Chris called his mom, she did not return the o=fall for two days. So, he called hi dad, and they took Lauren, but that changed hospitals.

By Chanaging Hospitals, I got many new docs, Dr. Rossi, (neuro) Dr. Dobrin (pcp) Dr. Masters (gyn) Dr. Simone (optho) and Dr. Al-Kassab, endocrinology. SO far out of the docs I have met, I am VERY impressed with ALL of them. I have 2 to go.

 

I had my stress test Tuesday, endo, Wed, Dr Rossi, Thurs,

Changes on the Horizon

After many months of pain, suffering, and med changes with little or no success, and often negative results the neurologist I was so thrilled to find almost 2 years ago gave up on me and referred me to Michigan Head and Neck Institute, I looked at this as a mixed blessing til Tuesday and Wednesday of this week, you see, MHNI is supposedly one of the top headache places in the Nation, however they use a lot of coping techniques, and protocol meds that I am already on, so we were not 100% confident in their ability to help when we were being sent (after all 21 years of a headache, I think I do a pretty good job of coping MOST of the time, until lately I did normal tasks, since February it's just been kicking my butt way more than I like, hopefully the new meds the new docs are trying will help (I am getting there)

Last Tuesday (August 10, 2010) I finally had enough, I had emailed my neuro and left messages because MHNI was not going to be getting me in til November 8,2010 and I was going to run out of meds if he didn't refill or see me again (he had been seeing every 2 months) and he stopped returning calls, but the last straw was when I got stuck in the bathtub, neither leg would lift me out and Chris had to help me out, walk me with my cane out to the living room and help me cool down. The shower didn't help the pain and I was feeling worse than before. We called family to watch Lauren, and decided to head to the ER. Once there (we decided on a different hospital than usual because after praying we decided we didn't want to be sent back to the same docs who were doing NOTHING for me) God REALLY used this decision in an AMAZING way.

Within less than 30 minutes of arriving in the ER I had an IV in and pain meds going, even after the two tries to get the line started. The ER doc had decided before giving me pain meds she was admitting for a minimum of Observation overnight, to be seen by THEIR neurologists, What a blessing that turned out to be…

In the hospital I got pain meds around the clock that did almost nothing for the first 24 hours, then I got a WONDERFUL spinal tap, We don't know how high my pressure was, but the radiologist said I would have broken the manometer so I trust it was WAY too high, a dear dear friend had been scolding me for putting it off for MONTHS, she was so right…sorry Brooke.

Anyhow, after my tap, I did not get immediate relief (and after my last tap they didn't drain me far enough so I got NO relief, this time he drained A LOT of fluid) so while it took about an hour to kick in, I got my pain down to a 6 (it had been literally about a 30+ so a 6 felt like heaven, I had not felt a 6 in years, probably before Lauren was born.

At my last appointment with Dr. Turner he had asked if I thought I could have Fibromyalgia (he had a medical student or resident who did a FULL neuro exam) and I didn't know (not my job to research, even though I know the symptoms coincide with Chiari A LOT), when I was in the hospital the hospitalist and ER doc asked the same question, I actually told the Hospitalist that I didn't go to medical school to self diagnose myself, I was in a crabby mood when she asked, Pain meds weren't cutting it and she had just poked me all over…I don't like docs poking me especially when it HURTS. But hey she was doing her job and that's where the changes come in.

Dr. Rossi, the new neuro met with me, she thinks there may be something with my neck, if it's my Chiari, she will know, we have decided to manage it medically for now and possibly see if physical therapy will help as well. I saw her in the hospital, they wanted me to follow up with my primary doc, but he always said "its not my job" and reminded me of the story "Everybody said that Anybody could do all the good things that NOBODY did" because My 3 main docs were named EVERYBODY, ANYBODY, and NOBODY. I switched PCPs, Dr. Dobrin I met today, and is the Furthest from Dr. Butlers it's not my job. We went over my history, and what I considered Heartburn she considered chest pain and ordered an EKG and Chest X-ray, she ordered a ton of Blood Work and a Urinalysis. Uhm, overall I was there 3 hours…she checked me HEAD to toe, Literally, and because of my pain at ALL trigger points, said fibro isn't a question, it is definite. Then she went on to CHEW ME OUT, lol for not seeing an Eye doctor (which was well deserved with IH I am supposed to see them annually or more often, and I am OH 10 months overdue) she gave me a referral, and it was so funny, I was checking is ratings on Vitals.com and a friend rated him. Then she gave me a referral to the Ob/Gyn in her office L because she is concerned my VERY Heavy Periods could be caused from fibroids or something else. Either way, she doesn't want me risking getting pregnant, so that's another doc to see. So while I got a New Endo because of my blood sugars not being controlled while in the hospital, a New Neuro because mine basically quit on me (and MHNI quit before they started, they called and told me I was too complicated for them) a new PCP, a New Ob/Gyn, a new Ophthalmologist…ahh sigh, I have lots going on, and she didn't look defeated or even scared off, just prepared for a challenge and glad that Dr. Rossi would be handing MOST of my medical care, lol, after all 90% of my medical is Neuro anyhow, but they are all in the same office with the same chart, so if I get NORMAL sick, I don't need to let someone else know about it.

From my Hospital Bed

On Tuesday I gave up. I had every intention of going to the DMC but God had other plans… and now I know why.

We called Chris's parents to watch Lauren, first his mom since she is closer to Detroit, but no answer, and no return call, since she NEVER gets to see Lauren we figured this would be the perfect time, but alas, she didn't want to see her this time either, so…where is Lauren? with Chris's Dad most of the days when Chris comes to see me and the first night.

There was No Wait to get a room in the ER, I was very weak and tired, and rated a 3 out of 5 for priority, so right in the middle, The doc that examined me immediately asked permission to admit overnight for observation due to the slew of strange symptoms.

So, I thought that was that, I would meet her Idea of a Neurologist and be sent home on Wednesday, HA HA.

I had my CT in the ER, but that was about all they did. I had to wait til Wednesday fir my spinal tap, to meet the neuro just about everything.

So they take me up to a room on the 5^th floor, Medical/Surgical. And here I sit, getting morphine every 2 hours 4ml at a time, and 8ml of Zofran every 8 hours.

The Vampires are here…be back in a few to finish the post.they had to finger draw my blood, but I spilled my meds everywhere. Ahh, meds replaced, breakfast in, praying it stays that way.

Anyhow…

Wednesday morning I get this horrible nurse who is trying to withhold pain and nausea meds, it was so bad I did not ask for my meds from 4:30-she went home. I had an LP done first thing Wednesday in interventional radiology he did awesome although ], we have no clue what my pressure was the fluid flowed like a faucet. He went above all of my scar tissue and poked twice, I felt nothing except the fluid draining.

Today they are ready discharge me, but and that's a big but, my pain, must be managed first, the hospitalist wants to stop my Morphine and not replace my iv if it does decide to kick the bucket.

Physical Therapy Evaluation today I better catch a nap

 

 

                        

It’s been FOREVER

Okay, I know it has been forever since I last blogged, I don't even remember my last post and my brain isn't working well enough to go look, so this may seem a little redundant, especially to my facebook readers.

Things have been really hard this summer. In late May my neurologist put me on 100mg of Verapamil a Blood Pressure medicine commonly used for headaches, we figured since my blood pressure runs high normal but normal nonetheless it wouldn't hurt, HA!!! Well, it didn't react discovered my arms and legs tingle and hurt ALL the time, and when I say ALL I mean ALL the time. I used to just have bad pain on my left side but now my right side hurts like crazy too, so my whole body hurts all over all the time.

I saw my pulmonologist in June, my Primary care in June, and I was pretty close to fine for both of those appointments. In July however, I started having this weird issue, when my Pain levels went up my lips and mouth turn purplish blue, both when I am awake and asleep. Well, I had JUST seen my docs and had an appointment scheduled to have a stress test done, so I figured I would discuss it with the cardiologist, on July 16^th, low and behold I just saw the nurses, and man was that fun, they made me to the treadmill test even though it was pain that got my heart rate up, I have to call Sara on Monday to see if she has gotten the results from that faxed in yet. She is at the bariatric surgeons office.

On July 22^nd I saw my neurologist, I figured he was going to schedule a spinal tap because of the immense pain I had been in but nope, he is sending me to Michigan Head and neurological Institute in Ann Arbor, I can't get in there til November, but by golly I will likely end up hospitalized for 2 weeks to see if they can get my pain under control, it almost sounds laughable at this point.

Chris is still unemployed, looking locally and out of state. He will likely be going to finish his degree at a state school somewhere outside of Michigan in Accounting, I am excited, he will finish his associate degree in December unless he gets a job in which case he will finish in May, 4 classes is too much for a working man to take all at once if he gets a full time job, especially here, these teachers forget they are not teaching at a university and expect you to put in close to 40 hours a week on assignments, so he needs to do well so he will be only taking two if he gets a job.

I see my respiratory therapist and endocrinologist on Wednesday and will ask them about the blue lips then. Until then tomorrow we start our new school year and I am already worn out, We are studying State History all 50 states, for History and Geography and some Science, Science is Nature studies based on the location we are studying. Math we are doing Multiplication facts, 4 digit addition and subtraction, as well as fractions and some other concepts we will be expanding Math quite a bit. Handwriting, we are doing Pen Pals with a friend of mine with IH's daughter as well as copy work. Grammar we are going to be learning about Nouns, verbs, pronouns and sentence structure. We will also focus on how to write punctuate.    

How much More??

For my facebook friends, they know how hard it's been. for the rest of the world, the only ones who know how hard it really is are those in my immediate household.

I am very private except on here because not many people know this exists. I truly do not know how much more I can handle. I do not want to hear one more person say "give it to GOD, or it's all in his hands, or God does not put on more than you can bare, or any other "quotable" bible verses Right now, they are not what I need, I need a HUG, a we're praying for you, or simply a simply when Truly led, a gentle hug.

Please don't ask how I feel, I am going to say fine, because you can't handle the truth, There are very few people who know the truth, and ONE special lady who knows it VERY well, she has been my Biggest Inspiration, since she has been through such battles as well. I recall a chat with her, she made me smile, we looked at each other and asked NOW, How do you REALLY feel J I love that woman so much.

My pain tolerance is very High, but I have seriously been contemplating a trip to the ER a lot lately, I have been so sick and I am scared that it is not getting any better. Will it ever improve? If not, is God really using it or is it just taking a toll for nothing?

Only time will tell.

I HATE SEE SAWS

This month has been a physical and emotional see saw and its only half over.

We did our financial paperwork for the sliding scale at my primary care doctors office and because Chris's unemployment is officially up this week, I had to turn in some extra papers while we WAIT on the government to decide what they are going to do about the last extension (somehow we were blessed and he actually had one more week, not sure if I miscalculated or what, but what a HUGE blessing it is) Anyhow… I had to turn in those extra papers on Friday, we still have not heard if he will even be approved for the 20 week extension probably because the government hasn't decided if they are going to keep doing it or not (I so am not happy how they are playing with this, if they discontinue it so many bad things WILL happen, there are about 5 people out of work for every 1 job that is available, Chris has gotten 3 interviews for I don't know how many hundreds of applications he has turned in, but 3 interviews in 18 months, but he put that time to good use and is almost done with a degree in Accounting)

My body though is also playing on a See Saw, Last week, Monday I was weak and felt sick all day, Tuesday I felt normal (my normal, not normal people normal) Wednesday I was fine, weak but fine, Thursday I puked all morning and was sicker than I don't know what, Friday, you would have No clue that I had been sick, back to being my normal sick, Saturday we had humidity that nearly killed me, I passed out in the living room and I literally prayed for God to take me home the pain was so unrealistically unbearable. Sunday started off HORRIBLE, I took my shower went to church and the humidity broke with the weather and I felt GREAT, my usual pain is up around a 12 most days on average, no 10s here, my doc doesn't even ask anymore, he knows that my good days are what would have his typical patients begging for narcotics, yet I am on NONE…but Sunday was about a 4 day until probably 3pm, yes, I made it through about half of the graduation party before I started climbing the scale, and I was there til 5:30pm and then went to Kroger after, I got home a little after 6:15pm by 7:30 I still I had not hit an 8, a very unusual rare happening, we are talking Miracle of all miracles day here. I was so elated. I came home, put groceries away, let Lauren play for a bit, and relaxed…then is started to hit…Uhm Uh OH… I Over DID it…

HA… 9pm…yikes, I feel really sick, take meds, drink, lay down Lauren cuddles than goes to bed Chris gets home, THANK GOD he is home safe, Uh OH!! I can't sleep, like tonight its almost 2am and I am still awake, but I am oh so exhausted, my body aches my head feels like those commercials for sinus meds, but OH how I wish this was sinuses, or even a simple migraine, I can't hold my head up, I lie down using support on my neck, I cry quietly in pain, that hurts too, my CPAP mask HURTS today, It's too much pressure on my head, but without it I can't breathe right, my neck is screaming, my head weighs too much, I turn it to crack it, it pops about half a dozen times, turn the other way, same thing, but no relief. I get to sleep…but its fitful cause of the pain, I wake up, everyone is crabby, I feel like I haven't slept at all, Chris enlightens me, its 12:45pm I TRY to sit up, I fall back down, try again, same thing, I ask what the humidity and weather is outside…Not really needing to know, my body is clearly telling me its VERY humid today and its going to be a bad head day. I manage on the 4^th try to get up and get to the bathroom, Tears run down my face, I just slept half the day and I still feel horrible, my family needs me awake and I am barely able to move.

It scares them to see me so weak yet so many days are like this anymore. If I do not have an appointment, I do not wake up, I have to have an alarm set or I sleep, it is rare for me to wake up, either that or I have such insomnia I am awake til 5-6am, then I get no sleep and its even worse. Neither works….if my see saw ride continues, tomorrow should be a good day, here's hoping, but I need a few more good days

Another Busy Day Gone By

Technically there are NOT two posts today, if this gets up before midnight it's a fluke, if not, "Choices" was still written yesterday, lol Blogger decided it wanted to be down when I was trying to post, since I use Word to do my posts and publish from here it didn't get posted til today. Oh well.

Today was interesting… This morning I had our finance appointment with my doctor's office (we are on a sliding fee scale, income based, but I LOVE going there anyhow) when I got home, I went into the master bedroom to rest, I felt worn out from a single activity and so I wanted to spend a few minutes refocusing because I knew Chris wanted to spend some time as a family, we don't get a lot of that, even with him home…he is busy looking for work and trying to stay occupied, and I am busy dealing with Lauren (and napping because my body gets worn out too easily)

So we went out and did some stuff together and then came home and rested again, Lauren decided it was the perfect time to practice her defiance act…I admit we are dealing with a lot of this as a control issue rather than anything else, likely due to a few issues, but today it made me more upset than normal, so we put her to work and then sent her to her room while I napped. We went to Kroger together just her and I earlier and she enjoyed that time so I had hoped that she would see that she can be good and get attention without it always being negative…

She takes so much out of me when she does not listen and has her attitude issues. Tonight her fit was very different, I felt different and Chris felt it too. We weren't sure why, but this time when she was sent to bed early she was given NO opportunity to disobey, every process she had to do she was followed including being sat with and read to in her room for an hour…usually we allow her quiet reading time before sleep, but we find she moves around on the bed, flops and gets out of it, not tonight, she had a LITTLE choice in reading material, but not much, and a lot of discussion. She is growing up and I think it's finally time… We read a few short stories from a regular book…but then we discussed why obedience is SO important.

Then we talked about attitudes, and pulled out a book that last time we tried reading she was Too young to grasp, Elsie Dinsmore, Yep, good ole Elsie crept back on our shelves, and this time we had a long talk about why Elsie is the way she is. It was really good, I want to see Lauren blossom I want her to learn to have the Character of Elsie Disnmore, that 9 year old who honored God above all and took the bible at its word. Now yes, we understand some things differently, but those, we can explain and work with, however, she also grasps that the books are OLD FASHIONED and kinda freaked out thinking I wanted her to be old fashioned, lol, and breathed a huge sigh of relief when I explained what I meant when I wanted her to be more like Elsie and how she honored Jesus in her life, kind of like a heroine. She felt better when I explained that the original books were written 142 years ago so the times have definitely changed a LOT since then.

Choices, which will you make??

My life has been a rollercoaster ride lately, and there are many days I whine and complain, my family gets the brunt of it, my blog gets most of the rest and a few REALLY trusted friends who have IH and understand what I go through seem to help with the rest.

Today though when I was checking up on my IH blogs, God really tugged at my heart, there are several "Christians" with this disease who really seem to be having a tough time yet they are definitely getting more care than I have gotten but that is neither here nor there, this is not about me, this is about the choice we make. I CHOOSE to function with or without daily pain. Some days, I Can not fully function, yes, I am down to about 4 good hours per day, but you know what, I take full advantage of those four hours.

Today, I went to church, then my 4 hours were up, I should have come home, taken a nap and my day would have been over, but no, I chose to push a little, because my family needs me, If I suffer a little, yes, I pay for it later, but someone shared a story called "The Spoon Theory" a few weeks ago, and it so applies to our daily lives, yes, it was written for Lupus, but I see it so profoundly in IH my, daily life is about how "the spoon theory works" today I borrowed spoons to make Hubby happy.

You see, He and I are both Amateur Radio Operators, Hams, I got my tech license the same day he got his Extra, it was a challenge I set to him, and he definitely held his end, now I don't use the radio, I help with set ups, and I liked going to the events before IH started getting really bad, but I still was always struggling in the heat and miserable, but it was family time and something we did.

Today was Pre-Field day at Metro-Beach, our local state park, we went out after church spent roughly an hour before the storms hit, and boy did they hit hard, now those with IH know that storms DO not agree with our heads, but as a wife, it is a servants heart I CHOSE to spend this time with him. We then stopped for ice cream on the way home as a treat for going out, it was a nice sweet treat for my sweetheart. We got home about 6pm, overall, I was up for about 5 extra hours that my body really struggled to deal with. My point, I chose to do things with my family, yes it rained, YES, My head still went through the roof, NO, I do not have pain meds, but what I do have, is a family who loves me and I have the joy of the time I spent with them. I chose not to complain, Chris could see how much pain I was in, but he knows that these activities are TRUE labors of love. We do things for each other because We can.

SO quit complaining about what you CAN'T do, and start DOING what you can. Realize that you have to do things when you are in pain, this is your life now, its not going to change, Yes, God MAY choose to heal you, but then again, this may be like Paul's THORN in the Flesh, and something you have to deal with, so learn to accept it, you are allowed to have days where that is a struggle, but start counting those blessings, and I promise this ride will, yes it REALLY will get easier.

Down but not out, Overwhelmed but not Hopeless

This has been a HARD two weeks. Back up…I do not even remember when I posted last, and my head hurts too much to go look.

My eyes hurt, I was SUPPOSED to schedule an eye appointment, and if certain people read this I will get scolded big time, I guess it is a mixed blessing that I have been praying for them because they have been so sick lately too? Hmm, not quite sure how that works…anyhow, Both of my eyes are causing me Major pain, I would love to say its cause I ran out of meds, but, that would not take effect today since, oh, I won't technically be out til tomorrow, lol, I took the last one this morning, and I am going to Kroger in the morning to fill the script.

May 25^th, Chris and I celebrated 9 years of Marriage, it was a rough day, we realized out of 9 years I have been healthy less than 2, that was a very tough pill to swallow, I came out of remission almost as soon as we got married and have been in various levels of pain ever since, the last 4 years now have been the hardest though…its hard to believe it's been 4 years that it's been so bad nonstop though, even harder to believe I waited a full year before I called the doc thinking it was just a phase and would pass, lol. Man was that a dumb decision…especially since it had been a growing problem for the previous several years.

Anyhow… May 27^th I saw Dr. Turner, I have to admit I left a little more than frustrated, I was overwhelmed I needed to ask questions and I didn't get to because he had medical students and was overbooked and very overwhelmed himself…I left angry and frustrated with nothing more than a new script. It got filled and I see him in July…Let me tell you, next appointment BETTER not be rushed or HE will not hear the end of it…I was NOT happy, and now I feel worse than ever. My body is having major tinglies in both arms and legs, I am getting roughly 4 good hours a day, and that is just plain not enough (oh and my next appt with him is at 8am, so if I don't get time, being the first appt of the day, I will have a FIT) I have CONSTANT nausea, and am just fed up with everything. My temper is flaring, which I have read is a side effect of MANY of the meds he has me on and the new one causes swelling and heart racing and all sorts of weird things, Nope don't like it especially since my head is not improving ANY. 2 days of somewhat half improvement is not sufficient for this crap.

Today I saw my Pulmonologist. She decided to run LATE, 50 minutes late to be precise (oh and my Verapamil did not lower my blood pressure it was 159/89, one pt lower than usual after driving through massive construction zones) she wants a pulmonary function test and chest x-ray done before my gastric bypass is scheduled, I am to schedule those for the same day as my appointment with Dr. Zambare in August since I will already be in Southfield (make only one trip, that I can deal with, and I like her techs I have been dealing with them for two years) Then I see her again in September. The only change she wants me to make with my CPAP is to wear it when I nap too, a pain in the butt for sure since I nap 1-3 times a day but my sleepiness scale increased 4pts this time so she thinks I may be having apneas during the frequent naps too and that may be why I am needing more and always tired regardless of how much sleep I get…So CPAP All The time, Chris teased me I might as well just keep it on 24/7 since I fall asleep when we talk sometimes, I don't think I am that bad, but I do zone out a lot.

Ugh Headache getting much Much worse, didn't think it could get worse than it was, I may need to use an Ice pack tonight, I posed a question for nausea relief and every suggestion was full of sugar that I can't have I almost cried, I think I will be asking for an appointment with my PCP when I see his finance lady Monday…I am so tired of the constant nausea.    

This and That

Well it's been a while since my last post and lots has happened, not much exciting nothing further as far as the RNY, basically I have been too sick to really get any further on the process, IH has overtaken a period of my life and I have been busy trying to make sure it is not winning the war.

I have not made it to church nearly as much as I would have liked to over the last two months. I barely passed my last class, and with that, I got through Business Law with just a C+, my brain never picked up pace during this quarter at all. In the last 10 weeks I have not had more than a few good hours put together in a row, so not what I am used to.

In just a few more days I get to celebrate my anniversary On May 25, 2010, I have been married to the most wonderful Man on earth for 9 years, that's longer than most marriages last anymore, especially for people my age.

On May 27, 2010, I see my Neurologist, he and I are going to have a LONG talk, My body and I are not getting along again, I have been having lots of falling episodes again, so not cool, usually right back on the couch or chair, but still not cool, I went to walk to the shed and Chris had to walk with me holding me steady the whole way back.

Headaches, we won't put a number on them, it's too high to identify way past ten most days, and those are my better days.

So, my and that has been a rough road. There has been a lot going on and I am tired of it. I am ready for a break and I am ready to see my friends have one too.

I walked out of my Doctors appointment without feeling defeated

I saw Dr. Z this morning, she is my wonderful endocrinologist. She has been helping me stay away from becoming a diabetic as well as working towards correcting some vitamin deficiencies and PCOS as well as getting me ready for bariatric surgery which we are aiming for in the fall.

I am down 8lbs in 2 months, Not a lot but it means we are finally FINALLY making progress. We are not sure if it's the meds, the dietary changes from the constant nausea, or what, but I have not lost 8lbs EVER.

She would like to see another 30lbs down before I have the surgery, but now I have more incentive than ever to get it gone, that means I would be that much closer to hitting a better goal. She likes the surgeon I picked, and is writing a really GOOD report for the insurance for progress notes, yay.

I see her again in August. Hopefully surgery will be scheduled for September or October.

If you don’t want to listen to your Doctors then STOP complaining about them and find New ones

Can you tell by the title where this is going? Can you tell by the title what kind of mood I am in? It’s almost 3am, I just checked in on my support boards because my head is not being nice, I figured I could use some encouraging, one of my closest friends is in ICU and I went on to pray for her and felt a little better, then I saw all the whining on the other board…

So, I decided I would let people know that the doctors are not ALWAYS wrong. There is a very VALID reason that they often tell us with IH to get OFF of our Pain Meds, See www.rxlist.com and type in your pain med, look at the Warning label and see what it does to us…then come see me if you think that the doctor was still crazy for telling you to wean OFF of it, yes, most of our lovely pain meds that make us FEEL BETTER increase our CSF (for the normal person who may read my blog, that’s spinal fluid that protects our brain and spinal cord and causes the Intracranial Hypertension that the majority of my friends have but it also affects many of my fellow chiarians as well)

So Those idiot docs we see, they are not being Mean by telling us to wean off the drugs, they really are helping us, yes, sometimes we need something to control the pain, but more often we are making ourselves worse. Yes, we know our bodies, but they know how the meds work, they are trained to handle the interactions. Sometimes our bodies do not work right and their hands are tied. Do not get angry, that raises your pressures and makes you feel worse. Do not make yourself out to be better than they are, you have not studied and gone to school to not be able to figure your issue out. This is rare, while they are finding more people it affects, it’s still rare and that means that they do not have answers or a protocol outside of their normal routine ways of handling things…if you happen to NOT FIT the mold, Please be patient and think that all you are harming is yourself by getting angry and frustrated. By lashing out at others, you are not making them want to help you. By lashing out at the doctors you are not making them want to rush to find answers for you. If you push your family to either lash out or you push them away, you are not helping them in any way.

If you are not spending your good days with your family (and yes, even those who have Extreme cases of IH and I can name a few really bad cases that are very inspirational off the top of my head, but even they have good days sometimes) But until you have walked in THEIR shoes, count yourself blessed, some have had this more than 10 years and endured hundreds of taps and dozens of surgeries and countless other complications. I have been through less than they have and look up to them, yes, I have had the diagnosis a long time, and I have had some complications, but when I see the people I have met, I look up to certain people.

They are Hero’s they have endured so much with very little complaint, they make me very frustrated when I see people who are newly diagnosed acting like they have a death sentence. Kayla, Lynne, Susan, Brooke, a small number of people who quietly fight and share their experiences, but they help others because they are an inspiration to all who watch them. They do not murmur or complain. Sometimes they ask for strength, or courage, but never sympathy. There is strength. Then I see a little tiny boy, only 5 years old. What will he go through? I don’t know? But one thing I do know, Elijah is strong, and his family is too, and he has role models, while we don’t think it’s fair that he has to endure this, I am sure as I can be, that that little boy will come through a fighter because he is growing up with this not a whiney adult like I see elsewhere. Yes, right now he may see fear when he goes and has a spinal tap or test done but as he grows up, maybe he can be one of the first generations to be spinal tap free, maybe they will learn how to reduce the pressure without it, they are testing it now. Better yet, maybe in his lifetime they will find a cure and he will not have to take meds that make him sick his whole life. Whatever God’s plan, I can bet, we won’t hear Elijah complaining about it, or any of the others, because We are strong, We Will Beat this together.

We may have IH, but as Kayla says, IH will NEVER have Us.

Such an Inspiration for someone who has had this since she was so young I believe if my semi non functioning memory serves me right, Kayla got sick around the same time I did, but that young woman has been put through the wringer more than I have times ten. I admire her courage and strength so much. She is just 16.

My Brain and I are NOT getting along

I know my posts seem sporadic; they seem to be running with my sleep patterns. Today I went to pick up my scripts and nearly lost it at the pharmacy. A simple trip through the drive through and I am Changing pharmacies No ifs ands or buts about it. I have had it up to my eyeballs (which are in almost constant pain the last few weeks) but I am tired of crap.

I have not slept a solid 4 hours in more than a week. So I am severely lacking in patience. I have never felt so blessed to NOT hear my phone (the tinnitus is actually outdoing household noises lately) But I went through the drive through to pick up my scripts that have been ready for a week now (I call them in before I run out)

And I am dealing with the lovely pharmacy, my scripts are ready, and the person in front of me is PARKED in the drive through…yes PARKED

They actually Filled a second script and WAITED

I could have screamed. What is the point of drive through convenience, then I get up there and they can't figure out one of my meds. It's been $8.72 for the last year, and all of a sudden they can't figure it out because it's not covered by Medicare. I was ready to scream…My pressure has been up, I know this, I can feel it and I am getting to the point of actually being willing to go in to the ER, however I just want to finish this semester in school first.

Next week I see my endocrinologist, then 3 weeks later I see my neuro, I want to be able to hold out til I can see him and see if he will schedule one and do it himself instead of having to get it done in the ER. Then the following week I see my Pulmonologist. I just am tired of feeling crappy.

The Path Life takes us down

A little over a month ago I wrote a post about twists and turns, In 10 days it will have been 27 months since my shunt came out and within months I had seen two different docs that when their "weight loss" suggestions netted me a mere pound or two in a month down on the scale (sometimes it didn't move and sometimes it even went up) they started suggesting bariatric surgery. The neurosurgeon at the time good as he was (he found the Chiari) but he could not figure me out, and he suggested gastric banding in other words Lap band, when my pulmonologist could not get my sleep apnea under control with massive pressure increases, she complained that I needed to see about some sort of "surgical weight loss"

Well…when my shunt came out there was a simple catch, our insurance covered NOTHING weight related, and I mean NOTHING. If it was mentioned on the report it was not covered.

Then in December when Chris lost his job that was the end of that, there was NO WAY we could ever pay for it on our own, but I was getting sicker and sicker and I had been seeing an AMAZING rehab doctor who referred me to the neurologist in his office (closer to home and much more competent in taking care of me) He did NOT mention Weight loss Surgery, He said it would benefit me and my Overall Health, but he did not promise an overall cure either.

Dr. Turner after a year asked me a question, I nearly had had a breakdown in his office, it was a bad pain day and nothing was going right, and I simply asked why my body was working against me. So he started asking a series of yes/no questions and suggested that when I get insurance I see an endocrinologist…My pulmonologist agreed and since he had not referred anyone she had Just the someone in mind.

That someone happened to be Dr. Zambare, she also is one of the lead doctors for the Medical weight loss team through the hospital where I had done some research and they have the BEST in the area of what is called Center of Excellence (Medicare requirement) Hospital for bariatric surgery.

My appointment was scheduled for the week following my Medicare effective date.

I had lots of appointments that week, since it was the first time I had had insurance since December 2008 I had everyone stacked into 5 days. I had been having some issues with my balance and mentioned them to dr. Turner (neurologist) and he sent me for some blood work (then Dr. Zambare did not repeat any of the tests) and I was diagnosed as pre-diabetic to add to my Intracranial Hypertension/Pseudotumor Cerebri and Chiari and Sleep Apnea, well, She put me on some initial meds to help with that but suggested I go to the two seminars about their weight loss programs (Medical and Surgical) where they go over the options and cost and basically tell you about what they are.

I had always had it in my mind that a lap band would not work, The reason I felt this way was I had read a lot about people who NEVER succeeded with them and since I already follow a portion control diet that isn't far from their post op diet (except the immediate after surgery of liquids and purees) I really didn't see how that was going to do me much good, well I also couldn't figure out why all the (non bariatric) doctors kept talking like this was easier and it would make me skinny and it would all go away.

Uhm, HELLO, I have A LOT of weight to lose, some 200lbs or more, ideally, but I do not see that happening easily under any circumstance. Very few of my doctors seemed to have the reality that that was not going to be easy, I have family and friends who have had a few different procedures bypass, banding, and stapling, and gained all the weight and then some back, I just could not see the point to putting myself through that and gaining the weight again.

 

Well I went into the seminar mid March and the first thing the Dr. doing the seminar said was THIS is NOT easy; it's JUST a TOOL, Hello!!! The lights went off and it hit home. I am handicapped, YES, but I can use a tool to Help me, just like I use my cane to get around, this is not going to make my weight come off, but it can help with the excess and it may not make me the Ideal weight, but it may help me get closer to it, and that is more of my goal.

SO, this morning, I had my appointment with the nutritionist, she gives me a goal, I wasn't too happy setting this goal, until I understood what it meant.

Every goal, has a meaning, our last goal was to try to eat more meals, EVEN if they are little, because I had the bad habit of only eating once a day, now even if it's just a yogurt, I have something at least twice, Today, I actually ate 3 meals though.

The reason you need to be in the habit of eating often is your metabolism thinks it's being starved and it HOLDS onto the fat stores. Another thing, she wants me to start drinking a protein shake as one of my meals since I struggle with eating. I got sugar free Carnation Instant Breakfast (I need to find them in the Variety Pack, Meijer only had Chocolate) and I am making them with 1% milk that counts for both a MEAL and my liquids, a 2fer.

My second goal is to start drinking more Low calorie beverages, That means I get to go to GFS and stock up on Fruit20, Now, nobody go suggesting plain water to me, because the one thing I have learned, after surgery I will have a VERY hard time with Plain water, especially the way I like it (ICE COLD)

My THIRD GOAL Ok This is the HUGE HUGE and ASTRONOMICALLY HUGE goal, is to get the rest of the stuff done on my check list, because they should be able to use Dr. Zambare's records as Dietary records which means…..Drum ROLL I need to complete Turn in my paperwork to get my Stress TEST, My Psych Eval, and THEN, we can schedule surgery

YIKES YAY Needless to say I am both excited and nervous, that means we are as little as 2 months away.

The heart of man plans his way,
but the Lord establishes his steps.

—Proverbs 16:9