Meningioma Living

Yet Another Pill!

That's right, I have to take another pill. I had my physical a couple weeks ago and according to the bloodwork my thyroid is underactive. WE have been watching this for awhile and its gone back and forth, but its definite now. The blood tests measure the amounts of Throid Stimulating Hormone in the blood and the usual amounts (reference) are .35-5.50. When mine have come back high before (high TSH means underactive thyroid) it has been around 6.5, well this time the TSH is at 14.48! No the T3 and T4 levels are still in the normal range but it can take up to a year for them to read off, the fact that my TSH is so high means I have to be put on a thyroid pill. so that means I now take 8 pills a day! I hate it! The good thing about the thyroid diagnosis is that it may explain why I have been getting the chills lately, why I am so tired lately, etc... Unfortunately, the thyroid pill is usually a lifelong treatment. Luckily it only costs $10 a month copay! And once I start getting it thru the mail it should be even cheaper.

I called the disability office today to see if they have processed my claim yet, they haven't. I can't call the doc to make sure the paperwork went thru because he is out of town so I have to wait until next week. I hope there aren't any problems because I am seriously low on funds! I am trying not to worry about it.

Yesterday I went out and found a couple rubber stamps to help make my jewerly. I have tested them on regular clay and even gotten a seal of approval from a friend so tonight I am going to try to make a necklace for my mom with the stamps. I know I said I am getting low on funds so why spend the money on these stamps? I feel that I need to keep working on this project, if it means I can't go to the movies or something, so be it. Plus when I am able to see some more pieces they will pay off. Any money I get from the pieces I sell now are basically paying off the supplies I bought to do all this and soon, when I get more orders I am going to start a new bank account for the proceeds to go into to be saved to start the foundation. I still need to come up with a name though. Still working on that.

Doing Better

My headaches have gotten better, though I am still getting them. I am sleeping better. The tingling in hands and feet is better. My neck is not as stiff as it was. Though my knees have been very achy lately, but that's probably unrelated. As far as my headaches go, today I was getting weird sharp, but not very painful, pains at my scar, but more like from the inside. It is still possible there is swelling, but I have been taking advil and the whooshing has gotten much better so I doubt it. My theory, and again I am not a medical professional and have no idea what I'm talking about, but my theory is that my pains around my scar are from the healing process. I have been noticing more and more feeling coming back to my foot and so it would make sense that my brain is healing. I see my N next week so I will ask. My depression doesn't seem as bad as it did last week either. I don't know if its because I went on disability and so all that stress is gone but I do feel better. Now I did some reading up on Topamax. Its used to treat BiPolar Disorder but more for the mania side so it may have been a bit of a negative side effect I was dealing with last week and maybe I am thru the worst of it. I do think the appetite suppression has started! Yay! I hope I can lose a little weight, I really need to drop like 50 lbs! Of course I don't expect the pill to do it all, I'm trying to exercise. I did the treadmill yesterday. Today I was too obsessed with something else to have time.

I spent most of my day today trying to figure out how to work graphics programs to make up my logo for the foundation and for my jewelry. I spent hours trying to figure out how to get something done on the computer and then I realized, what good is that? If I can't draw it and I can't even do it on the computer how am I going to sculpt it in clay? So I went to a couple stores to look for stamps. No luck, but I am going to go out again tomorrow. I did manage to get some things on the computer. I am also going to work more on that tomorrow as well, it was very frustrating figuring out how to use the program!

Metal Clay Necklace Pendants

I promised a while back that I would post the pics of the latest pendants that I made so here they are. The last pic is them in process, before they were fired, while they were still clay. I also included again the pics of my original necklace (which only became a necklace because it started as a bracelet and broke so I had to make some adjustments) and my bracelet and ring. I am getting better at this the more pieces that I make. I plan on making my mom a necklace for Christmas and I will post that as well.

Back on Disability.

I saw my Doc today and he agreed that I am dealing with enough to qualify me for disability. Whew! I was so worried he wouldn't see it that way. He won't do it just because I need the money, and I understand that, but I also understand that I have brain tumors and that in itself should be enough to justify disability. Anyway, I did not cry, although I did tear up naturally, I am very stressed about all this, and I told him about the headaches and the stress and the recommendation of my therapist to go on disability and the effects of the medications and he agreed I should go on disability for 3 months. I just hope it doesn't take too long to get my first check. The first time I applied, back in February 2007 it took 5 weeks to get my first check, but since I've already done this before and already collected this year it should go faster (fingers crossed!) My parents sent me a check, I haven't received it yet, but it will pay for my bills for the month, and then when I start receiving the disability I will be able to pay rent. If the check is late, I will just call the management company and explain and at the most they will charge a late fee.

I had to have more blood drawn today, to do more tests for my thyroid. If it still shows underactivity we will finally start treating it. This could also be a reason for the depression. After talking to my doc I doubt that the thyroid med will get me off the lexapro, but it may keep me from needing to up the dosage again.

Why is it that side effects of medications show up faster than the actual effects? Topamax is supposed to help with my headaches and seizures and possibly appetite, but they say it can take up to four weeks for that to take effect and yet the tingling in the hands and the bad taste in the mouth started right away! I also read that Topamax has been seen to help with neuropathy so I am wondering if it will help my leg. I have a follow up with my neuro doc on the 25th so I will ask him then.

I do think the wooshing thing is subsiding. I still notice it, but not as much. The headaches were getting better too, but with all the stress lately I have had a major headache the past couple days. Saturday was a very bad day, but after that it got better, but then yesterday I got such a bad headache from all the stress of dealing with the unemployment lady that hung up on me and everything that I even took a tylenol w/codeine. I have tried not to take it too often because I actually like the way I feel when I take it! Last thing I need is a pain killer addiction! Unfortunately, even though I am very relieved that my doc has approved the whole thing its not a done deal until I get a check in my hand so I have a major headache right now! I can feel all the tension in my neck. I need to do a little drumming and treadmill, sweat it out.

I have also been doing a lot of thinking about my friendships. I cleared out my cell phone the other day. Got rid of all the numbers of people that either I couldn't remember who they were or that I remember but who I have tried to keep in contact with but they have not bothered to recipricate. I don't need that any more. I need to start fresh. People that are still my friends have shown that, but people that have blown me off have lost their chance. I gave everyone several chances. It felt good to clear out the phone, kind of cathartic. I need to be that way on facebook too. There are several people that I have tried to contact several times and its not like they are just never on because they post things, they just never respond to me, so I need to give up and move on. The main thing I need to do though is forget about the show I was on and move on from that. I still get very hurt about all that and it gets me nothing except more pain. I need to move on, I just haven't figured out how to let go of it yet. I have tried everything I can think of but nothing works. If anyone has any insight, please share! So, back to what I was saying about friendships, I am starting new. I need to make new friends, though I'm not sure how since I'm not working, but I am not relying on all my old friends (except the ones who have proved that they are there for me and they know who they are!)

Depression, Headache, and Lack of Money…

Today I finally got ahold of unemployment trying to check on the status of my claim. It turns out that my extension that I filed a few weeks ago did not go thru and when the woman asked me for my confirmation number and I asked where I would find it she hung up on me I got absolutely furious! I have been trying for a week to get thru to unemployment, constantly getting a message that there are too many calls coming in to put me on hold so please call back and when I take too long to answer a question I get hung up on and I tried to call back and of course I couldn't get thru! I cried and swore a lot and typed angrily to my friend whom I happened to be IM'ing to at the time. I decided it was the perfect excuse to go back to disability. One of the reasons I was tentative about going back on disability was that I would lose the unemployment because I had already filed the extension. Now that I haven't I will have that available to me when I am able to find work next year when the actors have finally signed their agreement with producers and the industry becomes busy again. Plus disability will also give me what I need to make sure I keep my health insurance! Now I just have to convince my doctor to sign the paperwork. Last Feb he decided he could no longer in good conscious keep me on disability. Things have changed. My headaches have gotten worse and I am having bad emotional side effects from the meds right now. I am hoping that will be enough to convince him. If not I will try another doc, its just that he is the easiest one to see. I am so emotional right now I am sure some tears will come and how can he refuse me if I am crying? I have been crying off and on all day! And playing Rock Band, trying to get out some of the tension, not working. And my head is killing me! Tension headache, I'm sure, my headaches have actually been getting better lately, but all this stress has been really bad for me, I will tell the doc that too, that I am so stressed about money... I will post tomorrow with the results. My plan is to have him sign the papers while I'm there, they have scheduled him to see me for 30 mins so he should have time. I don't want to mail it, I want to take it directly to an office to make sure it gets processed immediately so I can make rent. My parents have sent me more money, that will help pay the rest of the bills, then once disability starts coming in I can breathe a little easier because it pays almost twice what unemployment does. And it would be nice if I was able to get my parents a little something for Christmas. I know they don't mind, but I do. I can't spend a lot though, because I know I am going to end up owing money come tax time. I hardly made any money this year, but I collected so much unemployment and didn't pay any taxes on it. I am going to go to an accountant to see if I can deduct medical expenses and such, but I am not that hopeful. But it will be nice to be able to pay bills on time again. I have heard from a couple different sources that many shows are set to begin in the middle of january so hopefully I won't be on disability very long.

Friends

Yesterday my friend that was going to go to my brain tumor support group meeting with me today called to tell me he couldn't go because he got work. I was sad that he couldn't go with me, but happy that he was getting work, and I joked with him that I had told him I am a work charm! He is the third person that has had to cancel plans with me dur to getting work, I think I am going to start charging now, if someone cancels on me because they get work they owe me a finder's fee! Anyway, after that call I called another friend to see if she could go. I actually was going to invite her originally, I called her last week but she never returned my call. So I called her and she never returned my call last week because she was working, so I told her about my work charm theory because even though we didn't make definite plans we were going to make plans last week! Well, as we talked I told her about my financial woes and she started lecturing me about things and I actually had to stop her. She was upsetting me so much I started getting a headache. I told her that I loved her but we don't get to talk that often and I don't need that from her, I need her support and so I changed the subject and eventually I invited her to the brain tumor support group meeting. She said she was really busy but she would try. We continued talking and then my battery died. I plugged in the phone and tried to call her back, left a message. I also left her a text message giving her all the info. She didn't respond to that either. So I went to bed not knowing what to think.

Last night I dreamt that I was with a group of friends and then they all started running and I couldn't keep up because I couldn't run. I got ro some marble steps and I tried to climb them but there was no railing and I kept sliding. I grabbed on to a column but it was so hard to climb the steps. When I looked up, I saw my friends standing there watching me. This dream is very much how I feel, I am trying very hard to get better and do well and I am not getting any help from anyone. Its not fun being alone.

I got my blood test results back today. My thyroid is still testing underactive. I need to go tomorrow and have more tests run to be sure, but I may have to go on a thyroid medication. Yay, another freaking pill to take! Though my therapist said that an underactive thyroid could also be contributing to my depression which if I go on thyroid meds I may get to go off lexapro, but that's just me hoping, I mean speculating! Everything else came back normal.

Oh, I want to go back to the support group meeting. Today was our one year anniversary. Usually there are about ten people there, but today we had many more. And we had musical therapy, which I am a big fan of! My friend was late so she missed the first part of the musical therapy but she was able to enjoy the end part. And we took a group photo since there were so many people there so I will have my friend in the pic, though she wasn't near me in the pic! There was a new member with a meningioma or maybe more than one, a man, who has been dealing with it for over a decade. I can't even imagine, its been hard enough the past two years!

Hope?

Is there such a thing? I guess. I may have gotten some today. A friend texted me to let me know she was filming nearby and that I should come by so she could intro me to prop guys. I went, turns out I already know one of the prop guys so he is going to try to help me get some work. So that was nice.

I am still experiencing some emotional ups and downs from the change in my meds. Today I cried after my shower because I was getting ready to go see my friend and all the problems I had last year with my job came back at me and I got so angry and sad at the same time. I feel like I am part of some sick cosmic joke that made sure I got into the union in time to get my insurance so I could have surgery so I could survive to lose my job and my friends and my hope, and if unemployment doesn't get here soon possibly my apartment (unemployment is late!) I don't have enough money to pay my bills for the month and I can't get through to the unemployment office to check on the status of my claim.

On the bright side of things, I am still trying to find some positive- though it is getting harder and harder every day, my headaches seem to have subsided. Saturday was real bad, but I really haven't had much of a headache since. I started to get one an hour ago but its gone now. I am still getting the wooshing feeling, but advil seems to help with that. I checked with my NS and it is ok for me to take advil.

Lost

I have not been myself lately. I feel miserable and alone. I know that may sound like me, but I was doing much better and now I'm back where I started! My head hurts and I want to cry almost all the time. I don't know if its a side effect of the change in meds or what but I feel all messed up! I keep trying to tell myself that things could be worse. I could have more tumors, or it could be cancer, or many, many worse things, but that doesn't make it any easier. I can't stop feeling sorry for myself. I try not to, I really do, but I can't seem to stop seeing the negative things. Right now there just doesn't seem to be anything positive to focus on and maybe thats just because my head hurts all the time so its hard to see any positive when I have trouble doing anything. And all my friends are working and I can't find a job and so that doesn't help either. I keep trying to set goals to make things better and when I start to get somewhere something happens to set me back, I feel like I'm walking in place. My therapist says I am doing everything I should and that I am too hard on myself. I just can't stand this emotional rollercoaster I am on. One day I'm fine and the next everything makes me cry and I feel so helpless and alone. I reach out to my friends and they are hardly ever able to make time for me. I am usually ok alone, I have been alone most my life, but there are times when I wonder why I have to go through all this alone. When do I get to be loved? I feel so left out of the world in that respect, like I am missing out on the one thing everyone in the world wants the most. I've never even come close. My whole life I've only ever really asked for two things, love and to lose weight. I always get everything else, never those two things. Maybe I should start asking for everything else and not those two things!

I have battled depression most of my life, but I really did feel better when I started the Lexapro. but after being on it for 4 months it wasn't as effective anymore so we raised the dosage. When the neuro doc prescribed Topamax for seizures and headaches he lowered the Lexapro again and that is when all this emotional craziness started. Now I read that Topamax is also used as a mood stabilizer but it will probably take awhile for it to kick in, I haven't even been taking it for a week yet. I just needed to get my feelings out.

There is this support group online that I check out every once in awhile and I thought about posting this there, I just don't really feel like I belong there. I have posted some things and gotten responses, but never really made any connects with anyone. I know it has done wonders for some, but unfortunately I am not one of them. I go there just to see that I am not alone and to get answers to certain questions, but as far as friendships, I haven't really made any connections. And as for my friends that I do have, they are all busy working and when they do have time for me I always feel like I have to show them that I am doing ok even when I am not. I don't want to come off as too needy, although I am. It is really hard to exist like this. I tend to not call people because they don't call back and its easier to get over people not calling then people not returning a call. Not saying everyone is like that, but a lot are lately and its very hard to deal with. I felt so loved when all this first started happening, everyone was here to support me and and all my friends called me almost everyday to check on me and now that I am supposedly doing better no one even thinks to check in on me, like nothing even happened. I don't understand it. If one of my friends had gone through this I would check up frequently because you never know. I know people have their own lives to live but that doesn't mean they have an excuse to forget about a friend in need. I guess these people really are more like aquaintences than friends because friends wouldn't abandon someone like this. Of course, maybe I am over thinking everything because I am so emotional right now, but the more I think about it, the more I think I am right. I would never treat anyone the way all my so called friends have treated me. Now there are a few people that are my true friends, they are not included in this. They check up on me on occassion and truly care about me, as for the rest, I don't really know what to say about them.

UGH!!!

My head is killing me! I had a coughing fit earlier and ever since my head has been in pain! I hate this! Plus I missed my Lexapro the other day and have been an emotional wreck the past couple of days! All I want to do is cry! My neck is totally stiff again too and I have the smoke smell as well. I am doing just great!

What to do…

Yesterday I posted that I felt pretty good in the morning. Its weird, I had to fast before my physical for the blood tests so I hadn't eaten anything since 8:30pm Tuesday night. I ate a Cliff bar around 10am but didn't really get to eat until after 11am. I felt good until aroung 9:30am. After that I started feeling weird because I was hungry. After I ate I felt just like I have been the past couple weeks, stiff neck, pressure in head, whooshing feeling... I felt horrible by the time I went to bed. I couldn't move a muscle without the whoosing feeling and that made it real head to do anything, include sleep- I tend to toss and turn! I felt just as bad when I woke up this morning. After a little while it started to get better, but now I have a headache and so I I feel like crap again. What is worse in my NS mind? Yesterday I waited to call because I had blood taken and was given a flu shot. Today I didn't call because I started to feel a little better, but now with the headache, and its too late to call. I want to give the new medication time to start working too, but I also want to feel better. I thought I was feeling better after the stress of the election was over, but I don't. I am still a bit stressed about money, however. I expected to receive my unemployment check by now and I haven't. I called to check the automated service but the call lines were so heavy they wouldn't even connect me to it! That is a good sign for the economy of CA, too many unemployed! So I am calling now... they still haven't processed my last form which I sent in 10 days ago. It says it can take up to 10 days to process, but I can't call tomorrow because I'll never get through! It usually doesn't take that long, it didn't take that long for my last check. I hope it doesn't take too much longer, I have bills to pay!

I am smelling smoke again! Ugh!!!

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