Relief....

So I haven't updated this lately. On Monday October 27, I finally had the procedure done to burn the nerves off my neck. Dr. K burned off the c3 to c5 nerves. I am still experiencing pain in that area of my neck. After all he did burn area's of my neck and it will take time for that to heal. My headaches are for the most part gone. I tend to have one at the end of the day after work. Especially a day like today where I work the drive-up. I wear a headset and the pressure from it on my big melon head causes a small headache. I have not had a sinus headache or a migraine since last Monday! Neck mobility is greatly improved, which leads to less tension in the neck muscles. All definitely a good sign.

As I told you in a previous post I fell at work. I banged my left knee up pretty good and am now seeing an orthopedic doctor for that. It's workers comp and they agreed to let me see a doctor at ONE. I am seeing the same doctor who did mom's knee replacement in August. We are treating it conservatively at this point. A shot in the area it was hurting the most and 4 weeks of physical therapy. Then we will go from there. I'm just lucky I have found such great doctors at ONE!!

Last week on Tuesday (October 28) as we were leaving Church mom got dizzy and fell. She hit her head really hard on the concrete and ended up with a huge bump on her head. About the size of a softball. I made her go to the ER. They kept her over night for observation but she is doing pretty good. Head still hurts but no stroke or anything like that.

I really like working at the bank. The people I work with and the customers are all very nice and make me feel very welcome. I still miss David every day and doubt that will ever change. He was after all the love of my life. =)

Let me tell you about my Friday....

So this past Friday (Sept. 19, 2014) turned out to be one of the best if not the best day since I lost my David. So my short term disability extension had been denied. From June 9th through August 20th, that is the extension that was denied. It was because my doctor did not submit the paperwork by the date required. Fine, I appealed. I sent the paperwork back the very day I got it. Should have had a decision on Aug 15. But for reasons unknown (and even though I called to check on the appeal several times) the paperwork was not sent to the appeals people like it was supposed to. I got a phone call on I believe it was Aug 12 telling me my case had just been assigned to an appeals person. They were going to need to extend when they issued a decision until Sept 29th. Sure why not, I had already been living off my savings, which was rapidly dwindling, why not wait another 45 days. Well on Friday morning I got a phone call, 10 days earlier then they had said, telling me my denial had been overturned and the extension had been approved!! So basically ten and a half weeks of back pay will soon be coming my way! What a relief!

So I get to work, in a really good mood. I am doing what I do, plus trying to finish some online training I need to work on, between customers. I'm busy reading whatever it was I was studying when one of my co-workers asks me if I have checked my email lately. I hadn't, so I open it, and there is an email from our manager to all of us. PNC like almost every business I know of does customer surveys. Now Kohl's and other places I am used to have the survey attached to your receipt. It is up to the customer to take the time to call or go online to do the survey, and at least at Kohl's we never know who helped the customer. It's more of just a general survey. Now at PNC they do it differently.  They use a service that calls random customers who have been into the branches. We don't know who is called and we have no clue who waited on them until the results are sent from the service to PNC. I'm not even sure if there is a set number of surveys per branch per week or what. But the results are sent to our managers who then let us know how good or how bad we do. It is a better system, I think. Because you find out how good or how bad you are doing. There is no way to keep unhappy customers from taking the survey. No getting your numbers up because you tell your employees not to give out surveys to customers who aren't happy with the service they got on that particular day. You know an ethical way to do survey's, who knew it could be done ethically? Anyway so I have worked in my branch for 3 weeks now. This was the first email I had gotten with specific results in them. Now like all survey's the scores range from a 1 to a 5. Five being the best and ones being the worst service. This email from our manager was a very good email. Three people at our branch had survey's done the week before and all three had perfect 5's! I was one of the three people who had a survey done the week before. My very first survey and I got all 5's!!! So my day went from good to great!! Knowing that even with all my nerves and self doubt I still managed to do my job. I made my customer feel special and important and I showed him or her that I know what I am doing.

God is very good!! =)

Light at the end of the tunnel?

So a lot of things have happened in the last few weeks for me. I have been at my branch as a teller for two weeks now. I still make a lot of mistakes, but feel like I am getting the hang of it. I like where I work and the people I work with. There are only ten of us at my branch and compared to Kohl's it is so much smaller! My new family doctor is amazing, she is working with me to get a handle on this thyroid problem I have. She also is able to talk to me about the procedures being done to help me with my back, neck, and headaches. Such a difference! She like talks with me, not at me, or worst not at all. The two procedures had helped my back so much! I say had because well, that's a story for later in this post. The one procedure in my neck definitely took care of the pain that was shooting down into my pinky finger. The other one helped a little but not as long as we had hoped. So last week on Wednesday these guys came into my branch to take out the old carpet and put new carpet it. They have been giving my branch a touch up if you will. The carpet is that square stuff were you take out/put down one square at a time. They were taking up all the old squares before putting in the new ones. My co-worker and I go to leave for the night after closing the branch. The area right outside the tellers area, they had already removed all the carpet from there. Even though the glue was old it was still extremely sticky. So sticky that my shoes literally stuck to the floor. I tried getting one foot/shoe up to keep moving forward and well my body did indeed move forward, while my shoes did not. Next thing I know I am lying flat on my face. Really? Why does it have to be me? I manage to roll over. My whole left side is already hurting. The carpet guys immediately came to my aid. They managed to get me in a sitting position, after my hair managed to get unstuck from the stupid glue on the floor. Thank goodness my hair is really short right now!! Two of the guys then try to help me get up. First of all I am always extremely self-conscious when anyone tries to help me up. I know how over-weight I am and worry about hurting someone who is helping me. But then problem number two enters the picture, my pants are stuck to the floor. All I can say is thank God I wasn't wearing a skirt that day!! They do manage to get me up and I move slowly barefoot over to where there is still carpet down. After pulling as hard as they can they get my shoes up from the sticky floor. I slip my feet in and instantly know my left foot is going to be a problem. By the time I get home my left side of my body is swelling in various areas. I have multiple bruises and a huge knot on my knee. Headache is also now at a 10+. I work Thursday, Friday, and Saturday. So thankful I can sit as much as I need to! I alternate sitting and standing because my back is once again hurting a lot. On Friday my manager gives me info on doctors I can see and encourages me to see them. She also was so apologetic about the whole thing, like she had anything to do with it! Seriously differences between this job and the last one.... Saturday my left ankle is swelling, a lot! So after I get off work I go home change and then head to the hospital on the list. They x-rayed well almost my whole left side. The good news is nothing is broken! One of my toes is sprained and that is what has been causing the swelling. My knee is badly bruised, along with my hip as well as my shoulder. I also had some dizzy spells from hitting my head, but those have stopped! Monday Dr. K did a diagnostic procedure on my neck. He did an epidural block on several of my cervical joints. If the pain improved or even went temporarily away he would know he was working on the right spot and then would get my insurance to approve him burning off the nerves in that area. Luckily my family doctor explained the whole thing to me. Well the block worked! I didn't have a headache for 7 hours and the block helped my neck pain as well as the new shoulder pain! So today was my followup with him and he is starting the ball rolling to schedule the burning off of the nerves! I also told him about how much pain my back is in from the fall. He asked me which injections I had had already and I told him. He then started putting pressure on my spine asking where it hurt, when he hit the spot I nearly jumped! OUCH!! He asked if I wanted to try another injection back there and I said yes! I am amazed at how the injections worked. I honestly thought I would just have to live with the pain, I'd been living with it for so many years already. So now I just wait for the two procedures to be pre-approved by my insurance. And I am so lucky! I have Mondays and Tuesdays off from work and Mondays are one of the three days Dr. K does these procedures. God has been so good to me lately!

One door closes, another door opens!

God does answer prayers. Not always the way you think he will, or how you want it. But he does answer prayers. I still have my headache, day 136 and counting. They are either getting more manageable or better, not sure which? I have had two injections in the lumbar region of my back, which has helped my back so much!!! I have had two sets of injections in my neck. One at the C7 spot and then several from C3 to C6. The C7 one has helped considerably with the pain in my arm. No more of that electric shock type pain shooting down my arm into my pinky finger. The other injections, it hasn't been a full week yet, and I am not sure if it helped or not. My neck feels slightly better, but I also still have the headache. It was really bad the night of the injection and again today it has been so painful. Sometimes I honestly think I will never have a headache free day ever again! =(

So I posted on facebook last week that I had informed one of my managers that I would not be back when my medical leave was up. The job was/is just to stressful, and it really shouldn't be. It's retail for pete's sake, not brain surgery!! However with my hypothyroidism, and Hoshimoto's disease, stress is one of the worst things I can have in my life. And obviously no one can be stress free, it's like completely impossible! However leaving a job that makes you cry x amount of days on your way home from work because you feel like such a failure. Well it seemed pretty clear to me that the job was one of the things that had to change. You have to truly love your job to stay with that kind of stress. And I liked my job and loved so many of my co-workers, but that didn't/doesn't make up for the daily stress I have to deal with. Today I went in, dropped off my official letter resigning and got to say some goodbyes. I will still visit (and shop!) because there are several people I will want to see! So now that I have put it in writing for Kohl's I feel like I can finally talk about the next chapter in my life. I will start training at PNC Bank on Aug 25! My training will be at the bank in downtown Fort Wayne for one week, I will then be moving to my bank, which is the PNC  in New Haven! It is literally 5 minutes from my house to the bank. I will only be working part time, which will help with the fatigue I am still dealing with from the hypothyroidism. I will be getting paid more per hour then I was at Kohl's and it comes with benefits; medical, 401k, PTO, bonus', and paid holidays. And that is a lot of paid holidays!! I will be working as a teller, the amount of angry customers compared to Kohl's will be significantly smaller. It also isn't a large branch so I don't feel like the "customer runs" will be nearly as bad as when you are at the Service Desk and you see the line stretching to the escalator! We also close at 6 Monday through Friday and Saturdays we are only open until noon! Closed on Sundays!  No Black Friday!!!! I will be able to enjoy Thanksgiving for the first time since, well since before David died to be honest. I will also get to enjoy Christmas knowing I won't have all that retail stuff to deal with. Oh yeah and no inventory to deal with on my birthday like I had to last year and a couple of years before that!!! I know my experience I gained by working at Kohl's helped me get this job and I will always be thankful for that.

So here's to a new job I hope to love and to headaches finally going away!! =)

Just so tired all the time!

For what feels like forever I have felt tired, all the time tired. Doesn't matter how much or how little sleep I get, I'm always tired. It was happening for years before David died. It's why he called me the Queen of Napping! I did worry that I had sleep apnea, but the original neurologist had me do a sleep study and that was ruled out. So he did do some good, I guess. I know now that it was my thyroid that has caused so many of my physical problems for years. It's most likely the reason why David and I were never able to get pregnant. I will have to come to terms with that at some point, that my worst fears that it was me who failed us are true. But I can't change the past. Now I just need to focus on feeling better. My new general practitioner doctor (whom I LOVE) has upped my thyroid medication and we will do blood work in the future to see if it needs adjusted further. Her goal is to have me physically able to walk a 5k on Thanksgiving Day! Right now I can't even walk around the grocery store without needing to rest and wishing my joints would stop hurting. But she is positive that with the right medication I will get better, and feel better. I am so thankful I was able to get in with her!

My ONE pain management doctor is also helping me a great deal. I have had to lumbar injections and feel even better after the second one I had two days ago. The pain is so minimal right now I have a hard time believing there were days I couldn't even turn over in bed without crying. I have only had one injection in my neck, and am pretty sure I will need a second one for it to show any real improvement. The injections aren't bad. But with the one in my neck I am sedated and that is a really weird feeling. It's like being there, but not really being there.

There was one half hour on Wednesday night that I didn't have a headache. It only lasted 30 minutes, but it gives me hope that the headaches will go back to, I don't know more normal? I know I will always have headaches, I just don't want them to last for days on end. That isn't that much to ask, is it?

Maybe?

So I haven't updated this lately. Just over two weeks ago I had a spinal steroid epidural. It had helped my back somewhat, though I am still having the occasional nerve pain. Today I had an emg test through my orthopedic office. The doctor who did the test was the same one who did the epidural. This emg test compared to the one done by my original neurologist was night and day. Dr. K was so gentle and nice and when my one spot started bleeding he stopped where he was testing so he could clean the blood off my shoulder. There is no nerve damage, which is a good thing. What I am having is nerve pain. He recommended an cervical steroid epidural for the neck and then another spinal steroid epidural for the back. This should help the nerve pain, and maybe it will help with the headaches!!Plus I see my new family doctor next week!!  I am really looking forward to being seen by her. I feel like she is going to help me to get better!

UGH!!!!!

So last week I asked my family doctors office to fax paperwork to my disability place from work, so my claim could be extended to the dates they were keeping me off.  Nothing major, right?  Find out today they never faxed any of it and now my extension has been denied so no money coming any time soon!  So angry and frustrated and just so depressed.  Yes I can and will appeal it.  Yes my ortho doctors office is now in the process of faxing their own set of paperwork.  But none of that helps me when there is no money coming in to pay all of my other bills.

I am scheduled to get a shot in my back next week on July 3rd. Hoping that will help that area at least! Plus an mri of my shoulder, an appt with the new neuro and an EMG test all scheduled for later in July.  And switching to a new family doctor, that appt is very end of July and can't come soon enough!!!!

I am so tired of being in pain and crying and not knowing what is going on.  Then add all the stupid paperwork and being at the mercy of these doctors and what they do and don't do. =(

Some good news...

First the latest breast exam seems to be okay.  They said there was something to do with my glad there, but it appears to be nothing to worry about.  I am to keep doing self exams and do another mammogram in a year to see if anything changes.

Second because the bills have been piling up and most of the testing has been done at one hospital I applied for financial aid there and it was approved.  Sure I still have other medical bills i.e. all the doctors visits to pay, but they are nothing compared to what all of the mri's and other tests were adding up to.  Very thankful for Parkview and how easily they worked with me!!

As the world turns....

Today's appt was with my ortho doctor. Basically at this point the only doctor I truly trust anymore! Arm seems to be getting worse by the day.  Back is now hurting again, felt it pop the other night when I was taking a shower.  And of course we are on headache day 83, and today is one of the really bad headache days.  So ortho doc takes x-rays of left shoulder and has now ordered another mri. He also ordered an emg test for my right leg and left arm. Because either the bulging discs in my back aren't showing up right on the mri or there is something else going on.  He was not pleased with who I was sent to neuro wise the other day and how he said the lesions on my brain are nothing to be worried about.  So Dr. Smith made a phone call and I am now scheduled to see Dr. Chang next month!  You know the neuro doctor my ortho doctor wanted me to see but I was told wasn't accepting new patients.  It's amazing how you can get in when a doctor makes the call/request!

So emg test scheduled for near the end of July, along with I think a steroid shot to my lower back/spine.
MRI of shoulder area to be scheduled.
Appt with new neuro Dr. Chang is scheduled for a week before the emg test, and I am to tell him it has been scheduled so he knows to watch for the results.
Ultrasound scheduled this coming Monday for right breast because mammogram may or may not have shown something.  My breast is to dense (much like the rest of me lol) so they have to be sure.

By the end of this year I think I will have had every possible test they can run on me.  Maybe I should schedule a pap smear and a colonoscopy while I'm at it?  I mean why not get them all out of the way! I honestly don't know whether to cry or laugh about it all.  I just know I hurt from head to toe all the time and I just want them to figure it out or at least get me on a medication that will ease the pain.  I don't even care if I have to take these meds forever, I just want to stop hurting. *sigh*

Frustration level reaching critical!

So I go to my family doctor for the results of my brain mri.  This is what my ortho doctor told me to do.  My doctor walks in and tells me he doesn't understand why I am there.  They could have told me what I needed to know over the phone and I need a neurologist for all of this.  I tell/remind him about my issues with my neurologist and how my ortho doctor told me to do this in the mean time.  So he tells me what the mri showed, which is that there are lesions but it doesn't look like anything major and I need to be seen by a neurologist for specifics.  He then says he will see if they can get me in to a different neurologist but almost all of them in town are part of FW Neuro.  So basically good luck.  I tell him the swelling in my arm is worse and how it hurts to even pick up a pencil.  He says he can't do anything about that, that it is tied in with my headaches and the mri report.  Okay.  Luckily there are still a few neurologist not part of "the fw group" and they actually had an open appt right then!  So off I go, he seemed good.  Told me it was not migraines and is trying me on a different medication.  Come back in a month or if the headaches don't get better call.  I ask him about my arm.  He says it has nothing to do with neuro that my family doctor is who would deal with that.  Umm okay except he said the exact opposite!

So I try and call this one family doctor that comes highly recommended.  She does the general stuff but also specializes more in hormone issues, like my hypothyroidism.  I called on Monday, left a message.  I called on Tuesday, left a message.  I figure I will give it one more try today.  They answered the phone!  And then I am told that in order to be seen by this doctor I have to go to a new patient orientation and the next one isn't until Aug 26.  What?!  First they couldn't call me back the last two days to tell me that and seriously I have to wait two months to do an orientation and then who knows when my first appt would be.

So now I am going to try and get into my next choice.  But of course her office isn't open on Wednesdays so I have to wait until tomorrow.

So arm getting worse, but I have to wait.
Headache day 81, could improve but who knows when.
Mental stability is tetering close to the edge and my dislike of doctors in general is increasing by the minute.

One step forward, two steps back

So the MRI of my neck showed no pinched nerve or anything except the deterioration the x-rays showed.  However something did show up at the base of my brain.  So a new MRI has been scheduled for Monday morning of my brain.  With and without contrast.  My ortho doctor wants me to go back to neurology and well that has been going so great and all you know.  He said he is willing to make a call if that's what it takes to get me into the neurologist he prefers.  But who knows if that will help.  Neurologists aren't exactly at the top of my list of doctors I trust right now.  My left arm continues to swell, the pain and numbness is increasing by the day.  But hey, let's take our time figuring this all out. 

Yesterday had a mammogram done with Francine's Friends.  Got a call today that I have to go back in and have them done over.  They say not to worry, that I probably just moved or something. 

Today is headache day 73. =(

First official diagnosis

So my family doctor ran blood work last week.  Got the results today.  I have hypothyroidism. It explains a lot of stuff. Along with that diagnosis my cholesterol is also off along with my blood sugars.  He was not concerned with my blood sugars at all.  Felt once I got the thyroid under control that would get the blood sugars back to where they should be.  They were just a little off.  Of course he says this all calmly and matter of fact, while my head is spinning and I am trying to take it all in.  He started me on a low does of medication for the thyroid and cholesterol and said we will increase as need be. Then of course he says we need to see what the mri results of my neck from this friday show.  I know it's good that I know something is wrong and that I am now on track to correcting it, but I also know this is not going to be as easy as he makes it sound.

And in an update on switching neurologists.  Not one single neurologist at the Parkview office is accepting patients.  At least that is what I was told.  Maybe I am reading to much in to it.  But something feels hinky to me.  Sorry but I don't buy it.  I feel like they are all closing in ranks.  I was given the option of staying with my current neurologist or seeing if any of the ones at the Lutheran office are accepting patients.  I said I was willing to see if any of them at the Lutheran office was accepting patients.  I do not trust the neurologist I am currently seeing.  He wouldn't let me finish a sentence.  He told me I can't have this or that without ever running all of the proper tests to rule it out.  He made up his mind that I simply have a migraine and he isn't willing to look any further.  I want a doctor who is willing to realize that not all headaches are migraines.  That we each needed to be treated as individuals and that we needed to be treated with care and compassion and listened to!

I hurt, I hurt from head to toe. The only time I seem to find any relief is when I am lying flat on my stomach.  Yes I finally found a position that works for both my head and my neck! Unfortunately I can't stay that way 24/7. LOL! Because of my neck my left arm and fingers and toes are "asleep" more then they are awake and it's starting to happen to my right side now as well.  And I am beginning to think my lips and cheeks may never wake up again either. This living in limbo sucks and I wouldn't wish it on my worse enemy.

And I miss my husband.  I want him here, with me.  I need him. I just need him to be able to hug me and tell me everything is going to be okay, that he will be with me every step of the way.  Yet he isn't here.  I am having to do this without him.  We were supposed to grow old together and I am stuck growing old prematurely by myself! Unless you have lost a spouse you can't even begin to imagine the ache that comes with it.  How now matter how much time goes by you are still left with this enormous empty space in your life that just can never be filled by anything or anyone else.  No matter how hard you try. I miss David.

Getting closer

MRI is scheduled! I get the neck MRI done next friday, with the follow up appt with ortho DR on Tuesday June 10.  Hopefully from there we can figure out best way to heal neck quickly!

Nothing else new to report today.  Pain and everything else same as last night.  Did finally manage to sleep. And getting the call today for the ortho office so quickly about the MRI goes a long way towards mentally making me feel better.  Actually the ortho doctor and his staff have been the ones who have helped the most in this whole thing.  Still waiting to hear back from neurology doctor but trying to be patient. =)

Patience is a virtue, or so I've been told...

So you would think after all this time I would be good at the waiting game, right?  Yea, not so much.  First I did get a call from the neurologist I want to switch to and am just waiting for him to sign off on taking me, so fingers crossed!! So I did physical therapy on Wednesday for my neck, at first I thought it went good.  She messaged the muscle and my range of motion opened up some and she gave me a couple of exercises to do at home. Then that night the pain kicked back in but like ten times worse to the point where I was up most of the night throwing up from it.  I have more pain in my left arm now and keep losing feeling in it then I did before the therapy.  And I went all day today with my face feeling like it was asleep.  Sure your thinking, Becky maybe it was just tired from being up all night throwing up!  But seriously, I have had these symptoms for weeks now and never have they lasted for this long of a period, it's really really scary. So the ortho Dr had said to call if the therapy didn't help or made the pain worse. So I called, and he ordered an mri.  Now of course the insurance has to approve it and they may not because I didn't give the therapy long enough of a try but seriously I don't intend to do therapy and then spend that night up in pain throwing up, know what I mean? Plus here I sit not throwing up but in pain still.  So we wait to find out if I can get the mri. Patience!

And speaking of pain, cause well my life does revolve around it. So my headache's are at their best (if you can call it best) when I am  lying down.  On the old scale of 1 to 10 it is generally a 2 to 3 when I am lying down.  When I first wake up in the morning for that first minute or so a 1 or a 2 if I am lucky.  But the minute I get up bam the headache pain shoots up and is worse when standing compared even to sitting.  And here is where the fun for me comes in.  Since doing the therapy my entire left side hurts more when I am lying down.  I would put it on a pain scale tonight of about a 9 to 10.  So do I sit up with a headache that right now is inching into a 10 or lay down with side pain, face, arm, ribcage, and shoulder blade area that is also in the 9 to 10 pain range.  I could try crying, but that makes everything hurt. Of course the dog doesn't have a problem sleeping she is snoring away, lucky! At least my Bosco has just come to sit with me, his purring is calming anyway!!

Here we go again....

I sometimes feel I am living a soap opera.  I know I wanted to write for them, not live one!  So on Friday I had an appt with my orthopedic specialist for my herniated discs.  They seem to be doing better, so that something.  I showed him my swollen left arm, he begins to exam it and told him my neurologist ruled out a pinched nerve.  Ortho asked if neuro did an mri of neck and I said no, ortho then said "then he couldn't have completely ruled it out." Okay then.  So he took x-rays of my neck and sure enough just from the x-rays he can tell I have deterioration. He wants to try physical therapy first to see if that helps, if it doesn't then he will order an mri of my neck.  Yay another test!!! In the meantime I kind of told him about what was going on headache wise and asked if he could recommend a neurologist here in town.  He did.  Of course the one he recommended is part of the same group I go to, cause life can't be easy can it?  So I call to try and switch to this doctor.  Well you guessed it, can't just switch on your own.  I was told I had to write to the administrator and it could take two to three weeks.  When your head feels like it has men with jack-hammers in it day in and day out two to three weeks is a lifetime, not to mention your disability is hanging on a tiny tiny thread.  So of course I go into tiny panic attack number, I don't even know what number I've lost track of them lately. Once I calm down I decide to call the admin, can't hurt to call, right?  Didn't even think I would get through to be honest, but I did.  He answered his phone!  I explained my situation, he gave me his email so I could write to him that way and get the process started sooner.  He also said it wouldn't take two to three weeks.  He didn't guarantee I would get to switch but fingers crossed because I CAN NOT go back to my neurologist, I just can't.

So today I go to see my gp doctor to discuss this "referral" my neuro wanted him to do.  There seemed to be some confusion.  My gp thought my neuro doctor was referring me to a different neurologist down at IU Med, because whatever is wrong with me is more then my neurologist can deal with (that much I agree with!) where my neurologist told me he wanted my gp to refer me to someone at IU med or the Mayo clinic because I could have some rare disease like Lyme disease.  The look on my gp's face when I said Lyme disease was kind of funny!  I told my gp about trying to switch neurologists based on my ortho doctors recommendation and he told me to keep pushing on that.  Had me schedule an appt for in a week and we would go from there if needed.  He did agree that since this is day 59 of this headache, it is not just a migraine like my neurologist keeps telling me.  So between my orthopedic doctor and my gp doctor I am feeling better.  I also feel better because I have some very good friends both near and far who have all reached out to me in various ways and your love and prayers mean more to me then words could ever ever say!!

No where to turn!

So today is headache day 54.  Doesn't even matter anymore.  We will start with Tuesday.  I went in for an appointment with my neurologist only to find out my appointment had either been canceled or vanished from the system.  I'm still not sure exactly what happened.  I went in today for tests because I am still losing feeling in my fingers and toes, as well as my cheeks and lips.  All at random times.  He wanted to make sure I didn't have a pinched nerve or inflammation somewhere.  I didn't.  Every test he has run has come back normal.  As far as he is concerned this is just a migraine and I just have to deal with it.  I have to wait for the medication to work.  The medication I have already been taking for six weeks.  While each day I get worse and worse.  Here is how it all breaks down in order of how I noticed the symptoms.

- Headache
- tastebuds off when drinking anything carbonated
- tingling feeling in fingers/toes followed by numbess
- extreme pain in back of head
- pain between shoulder blades
- pain in left shoulder down into arm
- lips and cheeks numbness
- muscle spasms back of head down neck in shoulder-blades down into back area
- left arm swelling, getting a little worse every day

So now he says the headache is just a migraine and he can't explain the other stuff and I should see my family doctor so he can refer me to a specialist down in say Indy or maybe even the Mayo clinic where they deal in little know illness like I may have.  Because I so can afford to drive all over the country trying to figure out what obscure disease I may have.  Never mind I asked him about checking to see if I had a csf leak because a lot of the symptoms I have are similar to a csf leak and he point blank told me I can't have one and he would not test for one.  When I asked about getting a second opinion he first said it was my right but he then later told me he would not give me a name of a person to go to.  So I sit here crying not knowing where to turn.  According to him I have to return to work in two weeks even though I am barely functioning. Not having any answer as to what is wrong with me and not believing for one second that for all of these days I have been dealing with a migraine.  I am beyond upset and don't know where to turn or even who to turn to.

Just..I don't know....

Today is headache day 41.  But it isn't even just the headache anymore.  It's so much of everything.  I am having the headache which isn't as bad in the morning but is worse as the day goes on.  Especially if I am doing any kind of walking.  Like going to doctors appointments.  When I get home I am just in so much pain.  My head is throbbing and I am having all these muscle spasms in the back of my head down my neck and in my shoulders.  I am having this pain in my back between my shoulder blades. My fingers and toes keep getting this tingly feeling and like losing feeling.  My face, my cheeks and lips get numb.  And now my back hurts from the spinal tap that didn't actually go well.  And the more I think about that the more depressed I get.  And I keep getting more depressed because I am blaming myself for it failing.  He kept telling the nurse he needed a longer needle. Maybe if I wasn't so friggen fat he wouldn't have had so much trouble doing the stupid spinal tap. So I sit here crying.  I am crying because I just hurt, I hurt everywhere and they can't seem to make the pain go away.  I am crying because no matter what I do I can't lose weight.  I had lost 50 pounds and even though I haven't changed anything, heck I was even moving around more with the type of work I am doing and yet I have gained back so much of it. I sit here crying because my disability is still pending.  I sit here crying because either I won't ever be able to go back to work, or I will but I will still be in pain and I will just have to try and find a way to work through it even though I get so dizzy when I am walking and have blurred/double vision when I am walking.  But I have to earn money to pay the bills.  And they can't figure out what is wrong with me.  I'm just sad and frustrated and lonely and I miss David more then ever right now!

Happy Cinco de Mayo!

Or as I prefer to call it headache day 37! 

So I went to the ENT doctor today.  I was not referred to him.  Went on my own, after having multiple sinus and ear infections last year.  I am glad I made the decision.  He feels the ear infections are a by product of the sinus infection and that the sinus infections have not been treated properly.  To many antibiotics given over to long a period.  So he is giving me stronger antibiotic and I am going to take it for the next 28 days.  After that he is having another CT scan done to see if there is any signs of a residual infection.  If there is then we will have to do something else to get rid of it.  If there isn't then hopefully I won't be dealing with them as often as I have been these past few years.  He also said something about the fluid coming out of my nose maybe or maybe not being spinal fluid.  I told him I had a spinal tap scheduled for Wednesday and he wants a copy of those results.  So I told him I would make sure to let my neuro Dr know to send him a copy.  While what we dealt with today will do nothing to help overall with the current headaches I am dealing with it will help to deal with a lot of the illness' I was dealing with last year.  I missed a lot of time from work because of my sinus' so this is a big step towards helping to help me and make my bosses happier with me! 

The headache chronicles

Day 32...this is what my life has come down to.  I count the days since my headache started.  The first two weeks I "muscled" through it.  When things started spinning and I threw up at work that was when enough was enough.  I left work early that day (Saturday April 12) and haven't been back since.  Called the walk in clinic at my doctors office and they said since I was throwing up to go to ER.  Went to ER told them about headache and length of headache.  Told them about dizziness and vomiting and about sinus pain.  Diagnosis was sinus infection with headache.  Given intravenous drugs and sent home with a prescription for antibiotics and pain meds.  Told if it gets worse call my doctor.  Sunday no better.  Monday no better, call doctor told to go back to ER for a shot.  So back to ER I go.  Given more IV drugs, a ct scan was done which was abnormal so an mri was done both with and without contrast and it was normal.  Sent home with new prescription for pain meds.  Told if still hurting to call doctor for referral to neurologist. Call doctor on Tuesday for said referral.  Call back a few hours later to check on referral, it had been approved just waiting on his nurse to call neurologist. Wednesday morning I call because I had not heard back from doctor's office.  At first it looked like referral had not been approved after all then yes referral was approved but the nurse still had not called neurologist.  So I wait, while head feels like it will explode at any moment.  Finally late afternoon doctors office calls and tells me I have an appointment for Wednesday April 30, two weeks from the day we are on.  I am in tears!  I will not survive for two weeks and say so to the nurse.  She tells me to go back to the ER for another shot.  You know the ones that have worked so well the past two visits, right?  So I hang up.  I call work, cause I was scheduled for this whole week and been calling off one day at a time.  I am sobbing, luckily my friend happens to answer when I call and she can understand what I am saying between sobs (and she is furious for me!) and she gets a manager for me.  My mom walks in and hears me crying in my bedroom sitting in the dark talking.  She thinks I am talking to myself.  I am trying to explain to Scott what is going on.  He thinks it's my back, which oh yea I forgot to mention I was recently diagnosed with having several bulging discs cause you know I love to have a lot going on in my life, and I am trying to tell him it's my head.  So anyway I tell him I am going to have my mom explain it all to him.  SO she is talking to him and explaining what all has happened and finally she says, is this Scott?  She knows Scott lol.  So back to the ER I go.  By now I am also having chest pains.  I tell them about them but am sure it's an anxiety attack, ya think?  But they run all the heart test just to be safe.  They run the IV drugs, a migraine cocktail blah blah blah.  Now when I came in my pain level was a 12 and when I left I would say maybe a 6.5 but I was pretty drugged by then.  So I go home with two new prescriptions. Thing is once the drugs wore off, yeah you guessed it right back to a 12. So I have at this point told them I am calling off for the rest of the week, this headache is not going to leave and if anything is getting worse.

So we come up on Monday April 21, I go for physical therapy for the bulging discs in my back.  I get home and call the neurologists office just to see if they can get me in any earlier, I get the nurses voice mail.  She calls me back fairly quickly, and says well your appointment is actually for this Wednesday April 23.  Well that was a relief.  So I go to the appointment and I like the doctor but the more I think about it the more I feel he isn't being as aggressive in trying to 1. stop the pain and 2. figure out what is causing the pain.  He wants me to keep taking the last medication I was prescribed which is supposed to help prevent migraines and he ordered a sleep study.  Now while I have migraines.  This is not a migraine, or at least the continues headache is not one.  I think I have had several migraines on stop of the headache from hell but the 32 day headache is not one very long headache.  I also don't think I have sleep apnea, but I am fine with doing the sleep study but the next available appointment wasn't until May 14!  I told him I wasn't able to work, that I had applied for short term disability he said he was fine with filing out the paper work for that and put that I could return to work on May 11.  HUH?!  I am still having the mind numbing headaches, no tests have been done to figure out why, nothing is making the pain go away.  The sleep study isn't until May 14 and he says I can go back to work 3 days before that?

So last week I called his nurse and told her my gut is just saying it's something more then migraines and/or sleep apnea.  He had talked about doing a spinal tap at the end of May beginning of June if the headaches weren't getting any better.  I asked her to talk to him and tell him I want it done now instead of waiting.  I just know there is something more wrong.  I have all these others symptoms.  The back of my head hurts, like someone has hit me with a baseball bat or hit my head against a wall or something.  The top of my head feels like it is on fire.  The back of my head down my neck to my shoulders have all these muscle spasms, like all the time.  Then my fingers and toes get tingly/numb and lose feeling. My face hurts and looks swollen and my cheeks, nose and lips get numb.  I am also having memory issues.  And occasionally I have fluid dripping out my nose, which is very annoying!  I did make an appointment with an Ears, Nose, Throat doctor and that is scheduled for Monday and my neurologist did agree to the spinal tap and that is scheduled for Wednesday.  So maybe I will finally start getting some answers.

I feel like I am going crazy!  The pain just never goes away, and then there are all the other things.  And I'm not working, and don't even know if the short term disability has been approved yet. =(